~ Leah Grace Jarmer ~

2011-11-20T16:15:00.001-08:00

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Another Wave of Grief - 3 Years Since Tears Started to Fall

2011-11-11T13:09:00.000-08:00

Tomorrow marks 3 years since Leah's 20 week ultrasound.....it's hard to believe that such intense sorrow has been a part of my life for so long now. I knew another wave of grief would be arriving this week, and I hope you don't mind me talking about how I'm doing. It's so hard when there is no one here asking, "how are you doing?" any more, and yet there is so much that I need and want to share!
I just found a really good book about losing a child that focuses on life BEYOND the 2 year mark of loss. It's called When the Bough Breaks. It's so exactly what I need to be reading at this point, as it really helps me to see how "normal" it is for parents to continue to carry a certain degree of sorrow with them for the rest of their life. Even in the really good times, there is this twinge of saddness that Leah couldn't be here with us to celebrate, whether it's the holidays or Kyla's birthday, or of course on Leah's own birthday. It's so hard, thinking about buying Kyla a pair of Christmas PJs, and being so aware of the fact that Leah's not here and I don't need to be getting her a pair too. Sometimes it's all the things that I'm NOT doing for her that remind me of Leah. It can get quite exhausting trying to move forward and not backwards, when forwards takes you farther away from your memories and experiences of your child's life. My love for Leah is there every day, and it's so hard not getting to express it to her face to face.

I'm realizing more and more that losing a child is not really something you recover from and go back to normal, but it's something that with time you learn to intigrate into your new life. It's like the track of your life hit a dead end, and you picked up your train, placed it on a new track, and are trying to forge forward while you are still so aware of the ache to be back on the track you were previously on, and traveling along upon it with your child. Does that make any sense? Those are just some thoughts I've been having lately. The book also talks about having more children after loss and highlights some families for whom that looked really healthy and healing, and for some others rather who gave that baby a "job" so to speak of making them happy again, or maybe parents who put that other child in a bubble to prevent any harm in their life and that's definitely not healthy either.
Tomorrow is also my baby shower for Ezra. I was fully aware of it being a Leah day.....and a very major one at that. But I also wanted there to be joy on that day too....getting to celebrate Leah's baby brother's life and how much we are looking forward to him arriving. We are excited, but at the same time so terrified! We so deeply want everything to be ok with him, his delivery, his health of course. 74 days until my due date. We are counting it down with Kyla on a big chain we just made. I feel so ready to just have him in my arms, safe and sound! But even more, how much I just wish I could have all my children here with me...safe and sound! All of those mothers around me who have that just don't know how ignorantly blissful their lives are......that they still have their innocence. I truly am happy for them! I wouldn't wish this ache upon anyone! But at times like this, how I miss still having my innocence!
So many days, life feels so much harder than I ever dreamed it could be. It makes me long so deeply for eternal things....for being in Heaven worshipping God face to face.....for what we were truly created to be....without sin and death and pain. When more waves of grief arrive, it is just SO HARD to keep on going so many of those days. It's hard being strong when we know how fragile life is, and how it is beyond our control to protect it from all harm.

So this is yet another wave of grief, that I was expecting to come. But I just didn't know when it was going to hit exactly, or that I still had this many tears to cry! What a blessing that some dear friends just happened to show up an hour ago and invite Kyla to the zoo with their family this afternoon. It's so hard to fully experience grief when you are having to put on a strong face as a Mommy or Wife, and it so obviously needs to be all let out! For me, the tears mainly flow when I am alone and can really focus on my feelings and grief. That's the part of working through and surviving loss that they call "Grief Work"! It takes a lot of work to let the feelings surface, and face them head on. But it is in my brokenness, that God provides Himself as he brings yet even more healing!

Waiting With Uncertainty, but With Such Deep Love

2011-11-11T13:00:00.000-08:00

Parents who are given a poor prenatal diagnosis for their unborn baby, and are brave enough to choose LIFE are a minority these days. Less than 5% of these parents currently choose to continue with their pregnancy. What the doctors don't understand, is that while 95% of parents choose to have an aborition of an "imperfect life" , those of us who value our child's life, treasure each and every day we get together! We each await the arrival of that baby with so much uncertainty, but with SO MUCH LOVE! Please join me in praying for these two special babies, whom the doctors have given a very small chance of survival upon birth.

The Stryker Family is waiting with love for baby Corrine to arrive in January.

http://animoto.com/play/gZvbGBCkjfAfhGLkK6OVig?utm_content=main_link

Corey and Emily are waiting with love for the arrival of their first child, baby Gracie Ann in February.

http://www.gracieannk.blogspot.com/

To Write Her Name In the Sand

2011-10-29T12:23:00.000-07:00

So there is this amazing mother, who also has a child in Heaven. And she has taken on the task of writing our children's names in the sand. She lives near this beautiful beach in Australia, and volunteers her time to write the names of our children who have gone away to Heaven, in the sand upon sunset each night. How incredible that the night she wrote Leah's name, the sky glowed Lavendar! Of course it did! It is just perfect! Thank you from the bottom of my heart, Carly Marie!

http://namesinthesand.blogspot.com/2011/04/leah-grace-jarmer.html

Itty Bitty Bracelets of Love

2011-10-25T19:02:00.000-07:00

~ Leah's Itty Bitty Bracelet of Love ~

A huge part of our journey with Leah has involved making new friends. Since Leah went to Heaven, God has brought new women into my life who are carrying a baby (or babies) with a poor prenatal diagnosis. It has been such an honor to walk beside them on this very bittersweet road, awaiting the arrival of their precious babies. I began making a simple gift for each of these babies, an itty bitty name bracelet. It is for these babies, that my heart has prayed over these past several years.

I was given a braclet just like these for Leah during my pregnancy. It meant so much coming from another mother who had a similar pregnancy to mine. It came from a mother whose child was now in Heaven. Thank you Owne's Mama!! Leah wore it often during her life, and it remains among my most precious keepsakes of my daughter. I decided to start taking pictures and post the names of these sweet babies who remain near to my heart and will forever be with Leah in Heaven!

Shirely Grace Quillen

1/29/10 - 2/20/10

http://www.caringbridge.org/visit/shirleygrace

Landyn Tom Harrell

July 31, 2009

http://www.caringbridge.org/visit/landynandlarsyn

Nathan McNab

3 Months Old

Jayden

Baby Crowley

Hartfeld Babies

Braylen Lane Lamar Menges

(twin to Brayleigh, also in Heaven)

April 26 – September 2, 2010

Zayana Grace Mendez

12/23/10 – 4/19/11

http://www.mendezmoments.blogspot.com/

Madalyne Agustina Guerrero

10/26/04 - 3/3/11

Baby Mary Guerrero

Went to Heaven 3/3/11

(due Sept. 2011)

National Infant Loss Day - October 15th

2011-10-15T20:12:00.000-07:00

Today our family participated in our third Walk to Remember. This event was hosted by A Butterfly's Touch http://www.abutterflystouch.org/index.html and the money raised will be used to provide bereaved parents with a memory box upon losing a baby at local hospitals, as well as providing financial assistance for parents facing a funeral for their baby. I was given the honor of sharing a little bit of our story with the 160 bereaved parents who attended. Here is what I shared:

Losing Leah & Holding onto Hope

A Walk to Remember

October 15, 2011

By Kristine Jarmer

I’m here today to share with you a little bit of my story. I fully and completely know that there is nothing that makes my story any more significant than yours. I wish we had time to hear each one of you share, because I know I would learn so much from the journey each of you have faced, in losing a child. I hope that you can see how much we have in common, as bereaved parents. I pray, that if your loss is very recent, that you will feel encouraged by my journey over the past several years, as I have struggled to survive losing my daughter Leah and face each new day without her. I want to offer you hope in the midst of your grief, encourage your faith in the midst of your questions and offer myself as living proof that God truly does heal broken hearts.

I’m honored today to introduce you to my daughter, Leah Grace Jarmer. We found out at our routine 20 week ultrasound that our second child would be another precious little girl. About an hour later, my doctor shared that there were complications. The scan had shown some major developmental abnormalities in our daughter’s brain. It quickly became apparent from seeing a specialist the next day that Leah’s brain did not form properly, and it was a very severe problem. They told us she wasn’t going to make it. We were devastated! The doctors were giving us a terminal diagnosis for our unborn baby, whom we’d never even met yet. As the tears dripped down my cheeks, I stared to let go of the dreams I had for my little girl. The doctors had shared they were very certain that she would be stillborn, any day from that point on. They didn’t sugar coat it for us – they just told us that was how bad things looked. We prayed for a miracle – we prayed for healing – but mainly we prayed simply for more time.

God answered our prayers for a miracle, by bringing Leah to full term and allowing her to be born crying! She spent 9 days in the NICU, where her survival was moment by moment. After her birth, Leah was diagnosed as having a very rare brain malformation called Alobar Holoprosencephaly. Her main challenge was frequent seizure activity, which the doctors were unable to treat with their usual seizure medications. So, at 9 days old, we brought our newborn baby home on hospice care. We were so thankful to get to bring her home, but it was so hard preparing to say good-bye. My husband and I cared for Leah around the clock, day and night, knowing each day we had together could be our last. Every three hours we fed her with a feeding tube and pump, which was probably the hardest part of her care, second only to holding her through her hundreds of brief seizures each day.

The days turned into weeks, and the weeks turned into three months. The final month of her life, we were able to hire a nurse to come in several nights a week to allow us to get some long overdue sleep. Everyone was surprised that in her own way, Leah was thriving. Leah was still Leah, with all her challenges, but she was growing and responding to our love. Leah was so easy to love, and we were honored to have the chance to realign our lives to care for her. I remember holding Leah in my arms and looking up at the full moon out her nursery window. I talked to Leah about Heaven, a lot! For surely the things of Heaven will be finer than this! She would leave a world marked by crime and cruelty, disease and disappointment, for one of wholeness, richness, perfected beauty, and peace. I began to see that Leah’s brief life on earth and quick deliverance into eternal life in Heaven, in the presence of God was not cruel or tragic. It was, in many ways, a gift to her, a protection from the evil all around us. Not that it felt less cruel or tragic to me. I felt robbed. I felt cheated. I just loved my precious, sweet baby girl! Everyone who met her loved her. Big sister Kyla enjoyed giving Leah “baby hugs and kisses”. Knowing our time together was going to be brief, we threw Leah a 3 Month birthday party complete with butterfly decorations, cupcakes, gifts and games. We cherished her every smile, every hiccup, every yawn and even every cry! As we opened gifts, little did we know that in exactly one week, our arms would be empty, and our eyes full of tears.

We had prayed earnestly for Leah’s healing here on earth, but God had a different, yet sovereign plan. On June 27, 2009, , exactly 99 days old, Leah went to Heaven and was eternally healed! She took her last breath peacefully in her Daddy’s arms. There was an instant acceptance in my heart that Leah was with Jesus and with that reality God gave me a very real sense of peace. I also learned that it is possible to experience both joy and sorrow at the same moment. Even in Leah’s death, God’s goodness and provision were clearly seen by our family. We truly believe Leah’s survival for ninety-nine days was our miracle! She had a greater impact for Christ in her brief three months than most people have in their entire lifetime. We are so incredibly proud of our “Leah Sweet Pea-Ah” as I affectionately called her. Through our journey with Leah, we learned to trust God day by day, and moment by moment. We learned to cherish our daughter, and accept the gift of her life, without knowing how long we’d be allowed to enjoy her presence. We learned that with God, it is possible to survive saying goodbye to our precious daughter. But as each of you know, grief is not a quick or painless process.

While Leah was with us, there was a real richness in living. We never knew which day might be her last, and that added a true intensity to each day.

We rarely had meaningless conversations. We talked with everyone around us about things that really mattered – like what makes a life valuable, what it means to trust God, and what it means to love and be loved. In the days Leah was with us, and in those first few weeks after she left us, I remember feeling full – full of insight and understanding and purpose. She had taught us so much and awakened us from the slumber of living by rote. We felt enriched by our experience with her, and she had opened up places in our hearts and in our thinking and filled them up with meaning.

A few months later, though Leah had left me with such a sense of fullness, I felt completely empty – devoid of purpose, lacking energy, without insight or any sense of perspective on what had happened. But as bad as empty feels, sometimes emptiness is actually good. You see, I learned that God can work with empty. Over and over in Scripture we see that God fills emptiness with his own power and life.

As I faced my grief, I learned that Jesus was my only true source of hope. Leah has given me an incredible gift. She has given me the gift of being forced to reconsider the very purpose of my life and depend fully upon the one in whom I hope. Those who are sailing through a comfortable life at this point have not yet been forced to carefully consider their lives and surrender their own dreams. But because I have been shaken to the core, I see clearly that if I cling to my own plans and desires, I will never discover the freedom and joy found in losing your life for Jesus. For I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With my faith, trust and hope placed firmly in Jesus, I eagerly await my reunion with Leah in Heaven.

If any of the parents sitting here today, can’t say with 100% certainty that they know they WILL see their baby in Heaven, I want so deeply to have you share with me in that assurance. That assurance is possible through placing your faith and trust in Jesus Christ as your savior. I could not possibly share with you my daughter’s story, without sharing the life giving news of God’s plan for salvation.

First, know that God loves you and offers a wonderful plan for your life. In one of the most well known Bible verses, John 3:16, it states, “God so loved the world, that He gave His one and only Son, that whoever believes in Him, shall not perish, but have eternal life”. Christ states that He came that we might have life, and might have it abundantly. Yet, most people would say that they are not experiencing such a meaningful abundant life. This is because man is sinful and separated from God as a result of sin. Therefore, man cannot know and experience God’s love and plan for his life. Romans 3:23 says that all have sinned and fall short of the glory of God. We were each created to have fellowship with God, but because or our own stubborn self-will, we choose to go our own way and fellowship with God is broken. God never leaves our side, but we can definitely move away, far far away, from God through our attitudes of active rebellion or passive indifference. This again is evidence of what the Bible calls sin. Romans 6:23 explains that the wages of sin is death, which means spiritual separation from God once we die. The Bible clearly states that Jesus Christ is God’s only provision for our sin. Through Him, you can know and experience God’s love and plan for your life. God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us on the cross, rose from the dead and has gone ahead to Heaven to prepare a place for those who believe. Finally, we must individually receive Jesus Christ as Savior and Lord; then we can know and experience God’s love and plan for our lives. Ephesians 2:8 says “By grace you have been saved through faith; and that not of yourselves, it is the gift of God; not as a result of your good works, so that no one can boast.”

As we face the death of a loved one, we are brought face to face with our own mortality aren’t we? It certainly brings eternity into a much clearer focus for me personally. If you would like to accept God’s free gift of eternal life, of salvation, of knowing that when you take your last breath on Earth, Heaven awaits you, please know that you can receive Christ right now by faith through a prayer just like this –

Lord Jesus, I need You. Thank you for dying on the cross for my sins. I open the door of my life and receive You as my Savior and Lord. Thank You for forgiving my sins and giving me eternal life. Take control of the throne of my life. Make me the kind of person You want me to be. Amen

If this prayer expresses the desire of your heart, then between you and God, you can silently ask Christ to enter your life. Know that God is near the broken hearted, and that He is able to restore our joy and hope for the future.

These past two years have not been easy for me. The waves of grief have definitely changed the landscape of my life. But slowly and surely, I’ve been able to see the work that God is doing in my heart. I want to encourage those of you who are fresh in your grief. You will go on. For a while you will just go through the motions: getting up, going to work, cooking, eating, sleeping – day after day. Then one day you will realize that you have made it to the other side. In time, you will learn to let go of your need to understand, your need for any further closer and your frustration towards others who can’t fully understand how you feel. Life won’t just stop, although for a while it may seem like it has. You will feel alive again, smile again, even laugh again. You will find joy and purpose again, as you grow through your loss and become a better person for having walked through this difficult time. You will be forever changed because of the precious little life that for a short while, was a part of yours.

Even if you can’t believe that it will ever hurt any less than it does at this very moment, that I will simply believe it for you. I want to say honestly that God has replaced the deepest sorrows within my shattered heart with a spirit of true gratitude for my daughter’s brief life. Am I back to normal? No! I have been changed forever by my love for my child and through journeying through the uncharted territories of grief. Over time, the exact same triggers that brought uncontrollable tears in the first year, are now the same memories that feel the sweetest and make me smile.

I feel as though Leah’s brief life is among my greatest treasures. Leah gave me a rare opportunity. Her very life called me to love on a higher plain and at a deeper level. Much of what we do for our children is to prepare them for adulthood or to generate gratitude one day. But in caring for Leah, I knew she would never grow up and thank me. I didn’t love her for any future reward or result. I simply loved Leah and cared for her needs. And it was, perhaps, the greatest privilege of my life.

Thank you for listening to my story. As I spoke today, I know that it has impacted me far more than it will any of you. That’s because I believe there is so much healing that comes through a parent sharing their love for their child who passed away. You each have a significant story to tell. I pray for each of you to have opportunities to share your story when you’re ready. Maybe you just need to speak your child’s name today. For your child’s name sounds the sweetest when spoken from your own lips.

I wanted to end with a quote that I feel so perfectly fits the spirit of our Walk to Remember this morning. “The mention of my baby’s name may bring tears to my eyes, but it never fails to bring music to my ears. So please let me hear the beautiful music of their name. It soothes my broken heart and sings to my soul.”

May each one of you be blessed with the support of friends and family who will join you in always remembering, always loving and always honoring the life of your baby.

Thank You ~

Ezra James Jarmer

2011-09-27T10:51:00.000-07:00

So we've named our baby boy ~ Ezra James Jarmer! It just sounded like the perfect fit for my children, Kyla, Leah & Ezra. Here is his sweet profile picture from the 20 week ultrasound.

Leah's Baby Brother

2011-09-20T09:37:00.000-07:00

Leah is a big sister! We are expecting her little brother on January 24th, 2012, and we can't wait to meet him! His life has been such a blessing, and has filled us all with hope. His pregnancy, however has been such a difficult one physically for mom, but I am doing my best to make it through each new day - just taking it one long, sick day at a time.

Being pregnant after Leah has also been so much harder emotionally than I expected. It is something that has taken all the courage I have, and yet I know now that I am not courageous enough in my own strength to face the unknown. In facing a future pregnancy, my heart has had to come to peace with accepting that this new baby may or may not be healthy. I am not only open to having a healthy baby, but rather the exact baby which God has in store for us. This alone was a very long, emotional journey to undertake, and arrive at a place of saying, even though I would NEVER want to walk down this same road again, I am willing to surrender my desires and plans for my life before the Lord. I know that any belief that I am in some sort of control over preventing HPE from ever touching my life again, possibly through choosing to never get pregnant again is simply false. For when God creates a life, He doesn't need our permission or for us to feel "ready" for that new life. If I were to choose to avoid a future pregnancy though it could potentially cause more pain and sorrow, I realized that I would also be avoiding the joy that existed alongside Leah's beautiful life. For her life was full of an intense purpose that was undeniable - full of a closeness to God that I had never experienced before - full of complete dependence upon God for her each and every breath. Her life was a season when I can look back and feel that our family was truly focused, without distraction, upon glorifying God. Her life is like a precious jewel in my spiritual journey of knowing, serving and obeying God.

We were told that there was between a 5 - 50% chance of a future pregnancy resulting in a HPE diagnosis with a similar severity to that of Leah's. I knew to expect it to be "hard", but what I didn't expect is how that would affect my ability to even as much as picture having this new baby arriving in January. That is because most pregnant women are full of an ignorantly blissful expectation that their child will be healthy. Yet, my world has been filled these past few years with so many babies who never made it to their parent's arms, never took a breath, and like our Leah, didn't get to stay. I have gotten to know so many families, who after having a baby like Leah, get their genetic test results that look normal, like Leah's did, and yet they have a subsequent pregnancy with the same fatal condition, even when doctors told them it was very unlikely. You see, HPE is such a rare condition, that there is MUCH more research needed to discover the likely dozens of additional genes that as of today are not being tested for. Hence, the 5 - 50% range, given to parents like us even after the 4 genes they tested looked totally normal. Doctors know they have only found the tip of the iceberg in terms of predicting the genetic factors related to HPE. Those were HUGE odds to be facing when considering a subsequent pregnancy. They are in fact, simply terrifying!

For how do you live with your heart desperately yearning with hope for a healthy baby, placed side by side with the new reality of just how many precious babies go to Heaven? The truth is that after losing a baby, you simply cannot expect that this new life will make it to your arms alive, even though you know that it still COULD, there is such a reality of knowing that it's not a given. This never caused me to feel like I was putting my love or attachment on hold, but it rather caused me to feel like I am full of love for this child and I am holding my breath, knowing that tomorrow has not yet been promised. In truth, that is how I feel each and every day in light of my loved ones, after experiencing that Leah was never meant to have 100 days in my arms, but rather she went to Heaven on her 99th day of life. Yet, I didn't know that her 100th day wasn't going to come to pass......so I lived each day full of love and grattitude for it was a precious gift.

Leah has been a huge part of our family, even over these past 2 years since she went to Heaven. And I guess it's not surprising then to share that she has been an even bigger part of this pregnancy for me. It's not that we haven't let her go, for truly we have. It's just the reality that our love for her remains, it has only grown over these past few years, and we are still so thankful that God brought her to our family. Just as we are thankful for Kyla's life, and for the life of our new baby boy. Being pregnant again reminds me so much of my pregnancy of carrying Leah within me. Even though this is my third time feeling a new baby kick, it still feels so miraculous to realize that there is a new little person living within my body! It blows my mind, STILL!

Kyla is so very excited for our new baby to be born. Her prayers the night of our 20 week ultrasound said, "Dear God, Thank you for my baby brother, and thank you that his brain is not sick, and I pray that he gets to stay. Amen." We are all praying that this little boy "gets to stay", as we live with the full reality that God doesn't owe us anything in regards to that. Yet, every parent wants their child to get to stay, be healthy and happy and full of potential for their future.

We look forward to holding our new baby boy in our arms, and we do not take a single day of his life for granted! He has been with us for 5 1/2 months now, and we love him so deeply!

Leah's Heaven Day ~ 2 Years Later

2011-06-27T20:29:00.000-07:00

Mother's Day

2011-05-08T20:03:00.001-07:00

Motherhood for me began with my precious Kyla Joy! I love how you make me laugh, with your quick wit and neverending humor!

Being your mother, Leah, has been quite a different journey than I ever could have envisioned. I am overflowing with my love, pride and thankfulness for getting to be your Mommy. While your big sister has taught me how to laugh, you have provided me with more opportunities to cry. Yet, as my tears have fallen over these past several years, the depth of my love for you has been exposed, and I see how closely joy and sorrow truly exist within love!

Waves of Grief

2011-03-29T16:20:00.000-07:00

This year, the week leading up to Leah's birthday was easier than last year. March 20th, still felt hard! Yet, the week following it has felt a bit harder than I had expected. Maybe I thought that since I had been feeling like God has brought me to a much brigher place, a place where my heart feels healed enough to focus once again on the future with hope ~ that this wave would be smaller. Or perhaps it just felt harder because this year I had farther to fall from. It's hard because waves of grief are not concerned with asking my permission before arriving. They just come!

It is just plain hard to celebrate your child's birthday without them! It takes more strength than I have to bake chocolate cupcakes, buy balloons, pick out a special book given to our family in Leah's honor, buy Kyla a special big sister gift, stand at Hallmark trying to find a special daughter birthday card that captures my heart for Leah, to place in her memory box. It feels exhausting because each step requires so much work to hold back the tears in those public places. Yet, those are all tasks that I truly WANTED to do, for myself, but espeically for Kyla in honor of her baby sister's birthday!

Happy Birthday Leah!

2011-03-20T21:02:00.000-07:00

Kyla wrote her sister's name in the sand.

Mommy wrote Leah's nickname and drew her a Daisy!

Even though March 20th is the first day of Spring, we had to bundle up to stay warm on the Oregon Coast.

Daddy & Kyla

Leah's Mommy & Daddy at Cannon Beach on her birthday!

Today was a day for remembering Leah! Everything we did held special meaning as we reflected upon being a family of four! We love you and miss you very much, Sweet Peah!

My Girls

2011-01-19T20:59:00.001-08:00

Click here to view this photo book larger

Our Love for Leah

2011-01-19T20:46:00.001-08:00

Click here to view this photo book larger

Leah's Song

2010-11-12T11:08:00.001-08:00

Leah's Aunt Callie wrote this song just for her. Listen to her perform it at the Walk to Remember in front of many people missing their babies too!

Two Years of Tears - Both Sorrow & Joy

2010-11-12T10:23:00.000-08:00

Leah's 20 week ultrasound

Leah's 20 week 3-D Ultrasound showing her
sweet little face and tiny hands

Leah's 20 week 3-D Ultrasound showing
her cutelittle face, hands, leg and foot

Leah's cute little fact getting ready to suck
her thumb, with her foot sticking up next
to her hand

Today is the 2 year anniversary of the beginning of our journey with Leah. It is the day that grief entered my world. It is the day the tears started to fall. It was the beginning of an incredibly deep season of faith, sorrow, prayer and growth. It is the day the thought first entered my mind, that my daughter Leah may go somewhere that I could not immediately follow her.
Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer." Our journey with Leah has taken us down a long bittersweet road. As waves of grief continue to come, I must be patient as I endure these afflictions which cause pain. I need to be patient with myself as my heart heals, and I need to be patient and allow God to bring me through my grief according to His time schedule, not my own. Even in the loss of my daughter, I can still have hope. For I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With my faith, trust and hope placed firmly in Jesus, I eagerly await my reunion with Leah in Heaven. It is by God’s strength alone, I am learning to smile through the tears, as I get better at answering the simple questions in life again. How many children do I have? I have 2 beautiful daughters, Kyla and Leah. Each is a precious gift from the Lord!

National Pregnancy and Infant Loss Remembrance Day

2010-10-15T13:34:00.000-07:00

Today is a significant day for other parents like myself – parents who have a child in heaven. It is a day I find myself full of compassion for all of the other families’ stories I have heard over the past few years. My heart is sad not only for my loss, but for each and every baby that left behind heartbroken parents upon it’s death. I have learned that my capacity for compassion has grown incredibly over these past two years. Just as my love hasn’t run out for Leah, neither have my tears. They flow less frequently now, but I imagine I will always have plenty of tears inside to cry as I carry my love for Leah with me for the rest of my life. I miss her so much!

In remembering the pain of losing Leah, I am so keenly aware of another aspect of those memories. Is it the reality of the intense blessings that existed alongside the sorrow. So often the conversations about Leah last only a short time, only long enough to communicate that I have a daughter in Heaven. How I wish there were more opportunities to share about the deep blessings, purpose, joy and spiritual lessons learned through our journey with Leah. I am still just so proud of my daughter and the life that she lived. That’s the complexity of the word bittersweet. Yes, I am very sad. But, I am also incredibly thankful and full of appreciation for the journey as well.

Caring for Leah was a time of such clarity in terms of priorities. Everything unimportant simply melted away, and we were left with everything that was absolutely critical for us to be focusing on. We literally clung to the Lord, for each and every moment of Leah’s life. The distractions disappeared along with the less important things, and it made abiding in God so very simple. We talked more about eternal things. I remember trying to help Kyla understand the truth about Heaven. While Leah was here, I remember role-play with her how it might look upon Leah arriving in Heaven. We took turns practicing to be Jesus, opening up our arms with nothing but smiles and love as the other ran into them giggling with delight. I wanted Kyla (and myself) to fully grasp that although we are sad when someone dies, for those who know the Lord, Heaven is a wonderful place. The deepest desire of my heart now is to leave behind all the pain and evil of this world, and enter the perfection of God’s presence – and to once again be with Leah.

Living without the fear of death is not something that I believe many of my 20-something peers understand or can relate to at this point in their lives. But it is where God has me at this very moment. I’m fully trusting that He has a plan for me to still be here on earth, as my number of days are not through. But Leah’s are! Leah was never supposed to be here today with our family. Her number of days were ninety-nine after birth. While intellectually, that brings a great deal of peace and comfort to my mind, it is my heart which still aches. It still misses. It still loves.

So, on this day of remembrance, Kyla and I blow up kisses to Leah in Heaven. We light her Sweet Pea candle and take in the soft, sweet scent. I pray for all the other families who have children in Heaven. And I trust God to comfort their aching hearts, as only He is able to do. And finally, I will offer up my own prayer of gratitude to God for choosing me to be Leah’s mother. I treasure the memory of her life, and I am continually changed by the depth of my love for her. Her life still matters!

Noah's Quest

2010-06-26T20:04:00.000-07:00

Today we joined over 100 others as we ran and walked to remember our precious babies, whose lives will never be forgotten. We took the steps that they will never get to take. We got to spend the day out in the open with our grief - but also with our pride in how much we love Leah! Luke, Kyla and I wore our matching T-shirts as we competed in the 5K race. While we didn't finish in first place, I do believe we were the first group pusing a stroller to cross the finish line. This made Kyla happy, as she deeply wanted us to win! With so many young families like ourselves, there were many, many strollers and young children. The bounce house was Kyla's favorite part, as bouncing is one thing she never tires of.

This event, called Noah's Quest, was a fundraiser for the Infant Loss Support Group that I have been attending over this past year. The monthly Brief Encounters meetings have been a huge part of my grief work. I have learned so much about what to expect in the coming months & years, as well as received confirmation for how normal my journey is compared to others who have traveled this path previously. It was good so see some familiar faces and support one another in such a tangible way. Some families had groups as large as 30 people joining them in the race. Maybe next year, we'll plan on bringing along a few more folks, to increase our team from just the three of us.

As I stare June 27th in the face, I see it as a very monumental milestone. To know that it's been one whole year since I've gotten to love my daughter face-to-face is still heartbreaking. Yet, to know that our whole family has survived an entire year, and such a tragic loss is nothing short of miraculous. God has carried us through the vallies and pits of this first year without Leah. We are learning to carry Leah's memory within our hearts. One year is not long enough to have eliminated the ache we have for Leah, but it has been long enough for us to begin learning how to live WITH that ache. She will always be such a beloved part of our family, and we will always be aware of how incomplete we are without her here.

Leah - we love you and we miss you, and we'll see you soon, Princess!

Mother's Day ~ A Collision of Joy & Sorrow

2010-05-07T21:15:00.000-07:00

As Mother's Day approaches, I can feel everything within my body literally bracing for what I know will hit on that bittersweet day! Last year, I was blessed to have both my girls here with me. Even though I spent the day completely sick, too sick to attend church, I was not too sick to enjoy the beauty of that day! Luke, Kyla and Leah all brought me breakfast in bed. I received a beautiful set of heart earrings, one heart to wear on each ear to represent the two hearts of my lovely daughters.

How do I really WANT to spend this Mother's Day? I really want to be spending it just like last year - my heart longs so deeply to have both my girls here with me. I want to give them BOTH kisses.....to express my love to both of them! When your heart still has a lifetime of love within it for your child, and your child has left and is in Heaven, it literally feels like your heart will burst! There is now nowhere tangible to put my love for Leah! It often overflows as simply tears, but the depth and various feelings that encompass my love for Leah is beyond words. It's as if the tears are the "wasted love" that has nowhere else to go.

Who am I as a Mother? I am still fully defined, in my mind, as both Kyla & Leah's Mommy! It is all of my children who define my motherhood; and that's where my joy and sorrow collide! I am so proud of both of my girls. Kyla brings me joy every day. Leah's life brings me closer to the Lord and Heaven daily. I am a different kind of mother than most other's I know. I am a mother - though not like you! I am a mother awaiting the day I can be with all my children again! I am a Mother who feels as though a part of my life is on hold. I'm doing my best to keep moving forward in my Motherhood for the sake of my family, especially for my living child. But I am very aware of the reality of BOTH my children, and I have a true yearning to be with them both. When you are a mother, whether your children are near or far, your love still reaches to them, where ever they are.

Mother's Day is both full of Joy & Sorrow for many! It is one relationship each and every single person on earth has had. There are many who wish their mothers had done better, been healthier, or loved them deeper. There are even more who recognize and fully appreciate the daily and lifelong sacrifices their own mother made out of love and devotion to them, their child. For me, this fuller appreciation came only once I became a mother of my own. I have a wonderful mother, and I am blessed to be able to spend Mother's day surrounded by her love and support. For many others, Mother's day is just as much about missing! Some miss their mothers terribly, while other mothers, like myself, miss their children, who made them a mother!

Leah ~ Mommy misses you so much, Sweet Pea! I am eternally thankful to have spent Mother's Day with you last year, Princess. Thank you for that gift! We have the gift of memories, the blessing of love and the bond of being Mother and Daughter! Your sister, Kyla, first made me a Mother, but it was you, Leah, who completed my true understanding of Motherhood! I took care of you, baby girl, from your first cry until your last breath. Few mothers get to witness their child's life in its entirety. I saw your whole life, and I can say it was beautiful. You fought with strength and grace, Leah! You fully embraced the life God created you to live. You have brought me closer to Heaven! You still have the proudest Mommy in the whole world.

It is by God’s strength alone, I am learning to smile through the tears, as I get better at answering the simple questions in life again. How many children do I have? I am a mother of two beautiful daughters, and each is a precious gift from the Lord!

Birthday Girl

2010-03-17T15:38:00.000-07:00

Newborn Leah - NICU

2010-03-17T15:33:00.000-07:00

Welcome Leah

2010-03-17T15:29:00.000-07:00

Leah's Story

2010-03-17T15:27:00.000-07:00

In July 2008 we found out we were expecting our second child. On November 12, 2008, at my routine 20-week ultrasound, we learned that our baby girl had several complications. The ultrasound revealed Leah had a cleft lip, closely set eyes, and a very rare but severe brain malformation called Holoprosencephaly (HPE). My doctor also suspected Leah had Trisomy 13. He said, regardless of the exact medical condition, her brain most likely did not form properly enough to allow survival. It was unlikely I would carry Leah to term. If we made it to term, she most likely wouldn’t survive birth. And even if she survived birth, she would only live minutes, hours or days. We were completely heartbroken and overcome with grief that our unborn baby girl was very sick, and may not reach our arms alive. We loved her so deeply, and at that moment begun surrendering our plans for Leah to the Lord. We realized it was His plans alone that would come to pass in her life.

We declined amniocentesis, because having a more accurate medical diagnosis didn’t change the severity of Leah’s condition. The doctors predicted her life would be short, and we didn’t dare risk making it any shorter through the potential risks of the test. Our doctor advised us that the main reason most parents choose Amniocentesis is to decide if they will continue with their pregnancy. This decision had already been made in our hearts years ago, as we believe that each precious life begins at conception as God forms each child within his mother’s womb. Terminating my pregnancy and thus ending Leah’s life prematurely, by our own hands, was unthinkable! We believed Leah was a gift to our family and that our sovereign God would write her story, beginning to end. We fully understood and grasped the reality that without God’s healing, Leah would die. But for God’s glory, first, she was going to live!

On March 19, 2009, we went straight from our 38-week appointment over to the hospital for emergency induction. I was induced because Leah’s amniotic fluid levels were becoming dangerously low. In addition, my blood pressure was getting too high. During the several hours of labor, we held our breath as we watched Leah’s heart rate drop with each major contraction. Our deepest hearts desire was to meet Leah alive. We were even prepared to have an emergency C-section, should my doctor think that would allow her to survive birth. After learning about how well my first delivery had gone, he was cautiously optimistic that Leah’s could be a vaginal delivery as well. We had focused much prayer on Leah’s upcoming delivery, as we knew the shorter and easier the delivery, the better chance Leah could survive birth. Once it was time to push, her head was already crowning. Within seven minutes, and two pushes, Leah was born crying!

Leah Grace Jarmer was born on March 20, 2009 at 2:57pm. She weighed 5 lbs. 11 oz. and was 18 ½ inches long. She had blue eyes and strawberry blond hair, just like her Mommy. She was born crying and breathing on her own – answers to two of our most fervent prayers. Her first APGAR score was 8, and she was already doing so much better than we were told to expect. She spent the first 30 minutes of her life being closely monitored by a NICU team in our birth room. My first thought when I finally got to hold her was that she was so beautiful! Within her first hour of life, we invited all of our immediate family into our room to meet Leah, as she remained cradled in my arms. Her breathing rate and oxygen levels were starting to drop, so they wisked her off to the NICU. My husband Luke never left her side. It was several hours before I could go and join them, although it felt like an eternity. As I waited, I felt the deepest sense of thankfulness for all that I had already gotten. I’d gotten to hold her, kiss her and tell her I loved her. She had overcome such immense odds to simply reach my arms alive. I felt like if this was all I was meant to have with her, I would choose to accept that. But at the same time, my heart hoped and yearned for so much more!

Upon birth, the Neonatologist informed us he was quite certain that Leah's body did not look like a typical baby with a chromosomal disorder. The tests came back in the coming weeks, that Leah's chromosomes were in fact normal. At that point, HPE, would be her complete, yet still very adverse, diagnosis. Leah's brain malformation had been diagnosed by MRI as Alobar, which is the most severe type of HPE. The diagnosis itself didn’t translate to an exact prognosis for Leah’s survival. Doctors gave us a general timeframe of 0 –6 months. They said that her length of survival would depend greatly upon the specific degree of challenges her body faced. They shared honestly with us that Leah faced very intense and severe challenges, and her life would be on the shorter side of that range. Again, we were told that most likely Leah would only survive a few more days. We continued to love her unconditionally, accepting her challenges and desiring to give her the best care possible for her entire life.

Leah spent her first 9 days of life in the NICU. The doctors ran tests, including an MRI, EEG brainwave seizure study, and an ultrasound of Leah’s brain. Her HPE diagnosis came to include the following challenges: severe seizure activity, lack of pituitary function, inability to control her body temperature, Diabetes Insipidus and she would require a feeding tube. The NICU staff was amazing, but they reached the point in Leah’s care where there simply was not anything additional they could do to help her. Her condition could not be treated, and her seizure activity was increasing daily beyond a healthy level. They predicted she could survive only a few more days due to the stress from the seizures. So, the NICU made plans to send Leah home on Hospice care. We could bring her home and continue the exact same level of care, including feedings and medications that were helping to manage some of the milder symptoms. We wanted to be with Leah for the remainder of her life, in the comfort of our own home.

On March 29th, Leah came home! It was wonderful seeing the love between big sister Kyla and our little Leah. Luke was able to be home with us the whole first week, which was a good thing because Leah kept us plenty busy. For the next three months we felt blessed to have the opportunity to care for Leah. We excitedly put together her nursery and thoroughly enjoyed making her a part of our lives. She went many places and impacted everyone she met. Leah loved church and all the attention she received from our friends and family. My favorite memory was taking both my girls to the park and library together. Kyla enjoyed giving her sister “baby hugs and baby kisses”. Leah’s favorite position was to be snuggled up against her Mommy’s shoulder, which would quickly put her to sleep. We cherished her every smile, every hiccup, every yawn and even every cry!

Caring for Leah was very intense, but a huge privilege as well! Her daily schedule included tube feedings every three hours around the clock. Leah received medication to help control her seizures (but several hundred a day was still very intense), as well as medications to replace the hormones lacking in her body, and she received a very large dose of love from Mom, Dad and big sister Kyla daily. Her seizure activity increasingly interrupted her sleep, so she was awake much of the day and night, needing our love and care. God gave our family the strength to endure and function on very little sleep the first two months. Hospice nurses came for an hour visit once a week, to simply check her vitals and share their amazement at how well Leah was doing, considering her challenges. The final month of her life, we were able to hire a nurse to come in four nights a week to allow us to get some long overdue sleep. Everyone was surprised that in her own way, Leah was thriving. Leah was still Leah, with all her challenges, but she was growing and responding to our love. I am so glad that I decided to pump and feed Leah my breastmilk. She nearly doubled her birth weight in three months, growing to just over 10 lbs. We joked that with all her baby chub, it was obvious that one challenge she did not face was lack of nutrition. Leah was so easy to love, and we were honored to have the chance to realign our lives to care for her.

We had prayed earnestly for Leah’s healing here on earth, but God had a different, yet sovereign plan. On June 27, 2009, Leah went to Heaven and was eternally healed! She took her last breath peacefully in her Daddy’s arms. There was an instant acceptance in my heart that Leah was with Jesus and with that reality God gave me a very real sense of peace. I also learned that it is possible to experience both joy and sorrow at the same moment. Even in Leah’s death, God’s goodness and provision were clearly seen by our family. We truly believe Leah’s survival for ninety-nine days was our miracle! She had a greater impact for Christ in her brief three months than most people have in their entire lifetime. We are so incredibly proud of our “Leah Sweet Pea-Ah”. Through our year-long journey with Leah, starting with her conception, pregnancy, birth and life, we learned to trust God day by day, and moment by moment. We learned to cherish our daughter, and accept the gift of her life, without knowing how long we’d be allowed to enjoy her presence. We learned that with God, it is possible to survive saying goodbye.

“Goodbye Leah. I’ll always love you. I’ll love you here, and I’ll love you there!” These were Kyla’s final words to her baby sister, the night before Leah went to Heaven. None of us knew that the very next morning Leah would be “there”.

In receiving a poor prenatal diagnosis, there is always room for hope! In both caring for our special needs child and upon saying “Good-bye” to our precious daughter, we never gave up hope! I’ve recently read an impactful book called Holding On To Hope, by Nancy Guthrie, in which she takes us by the hand and guides us on a pathway through our pain – straight to the heart of God. I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With our faith, trust and hope placed firmly in Jesus, we eagerly await our reunion with Leah in Heaven.

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39

The Jarmer Family – Luke, Kristine, Kyla & Always Leah
Kristine147@hotmail.com (Please contact us if you are in need of support)

If your child has recently been diagnosed with Holoprosencephaly, please visit the support group, Families for HoPE at http://www.familiesforhope.org/ .

7 Months Apart

2010-01-27T16:10:00.000-08:00

Today is the 7-month anniversary of the day we lost Leah - the day she went to Heaven – the day that everything changed!

I’m honest when I report that things aren’t “all better” yet for my family and I. The analogy of grief coming in waves is so very accurate for me. When several seemingly good days pass, I seem to know that the next harder day is just beyond the horizon. I’ve been attending a support group specifically for parents who have lost a baby, appropriately named Brief Encounters. It meets once a month in Portland, and is usually attended by between 12-20 other parents. It definitely meets the need I have to continue talking about Leah, to openly express my sorrow through tears and to remember I’m not alone in my painful healing.

Yet, it still can feel quite lonely in how much I PERSONALLY miss Leah. How I secretly wish that I wasn’t the only person, who wakes up each day, takes stock of life as my mind becomes conscious, and has to experience the reality of remembering that Leah is no longer here. It’s just those twilight moments as I awake, that I think about my children and their needs for me at that very moment. “Does Kyla need me? No, I haven’t heard her awake yet. Does Leah need me? No, Leah is in Heaven now.” Then the painful reality hits me anew, each morning, that Leah isn’t here anymore, and I can’t go check on her or sing her the “Good Morning Song” like I will momentarily be singing to her big sister. Yes, I’m growing more and more accustomed to this reality hitting me each day, but it still makes me even less of a morning person. It’s just so hard to face each new day, without your child – without a piece of you – present to be a part of it.

Knowing that Leah is loved, remembered and missed by other people means so much. My dear friend Heather, has sent me a card each month on the 20th (Leah’s month birthdays) since Leah passed away. I was so touched and brought to tears in July when she sent Leah a 4-month birthday card. I was blown away when another one arrived in August, on her 5-month birthday. I didn’t really expect the one that arrived in September, October, November or December. I’d completely forgotten the possibility of one arriving last week in January, and I was brought to tears yet again by her thoughtful gesture. They’ve been lovely cards written to Leah, in honor of her special days. Heather’s words are so simple and loving and tender. I am so in awe of her devotion to sending them, and as a busy mother of three herself, it makes the effort and love behind them even more amazing to me. With the importance of support like this, I’m so blessed to be able to offer my support to others.

It seems like many other parents who lose a child start some sort of Non-Profit in their honor to reach out and support others. Some parents have written books about their loss. Others start support groups. I have been trusting God to use this painful experience for His glory, but I haven’t felt led to do any of those above-mentioned things. At times, I feel like I SHOULD be doing some big major project in Leah’s honor. Yet, it seems that God is using me in a much more individual type of way. Since Leah’s birth, God has brought Mom, after Mom, after Mom, after Mom into my life who have received a similarly terminal prenatal diagnosis for their unborn child. I think the number is approaching 10, with one giving birth last week and another due this week. I’ve been in touch with these mothers, who live all across the country, through email, phone calls, letters and Facebook. I never would have imagined that I’d have the emotional stability to walk along and support another person so soon after Leah, let alone 10 others, all of whom have already lost their babies. Yet, I feel equipped in each case to provide a listening ear, prayer, resources, “advice” for preparing for the baby’s arrival, and sensitivity towards their grief. Knowing that God has brought each Mother into my life for a dual purpose is so essential to my ability to open my heart again. Each mother was given less than one day with her precious baby, which reminds my heart to be so thankful for God’s gift of 99 days together with Leah. Yet, still I can relate to the reality of that number of days being far too few by a Mother’s accounting. Each of our arms is empty, our hearts miss our babies terribly, and the journey of grief has arrived and will be sticking around much longer than we’d like. I’ve always known myself to be an “emotional” person, and that too is an advantage, as I truly believe I have an unending supply of tears (it’s the tissues that still seem hard to come by at my house).

It’s been a whole year since the creation of Leah’s CaringBridge website. It has allowed those who know us to follow Leah’s journey. Because of the simplicity of the Internet, we were able to receive prayers and support from so many around the country that have never even met our family. They heard of us from someone they knew and quickly became part of this journey with us. To say we’ve been overwhelmed by your love and support is truly an understatement. I know God has entrusted ME with the responsibility of sharing Leah’s story. That is why I have continued to write and update this CaringBridge website even after Leah’s medical situation ended. It has been provided to me at no cost for the past year. Now it’s time for that space to be used by another person with another story. Yet, I know Leah’s story isn’t done being shared – it isn’t done being used – it isn’t done teaching about God’s faithfulness. I have moved all the content over to this blog for a more permanent location. I will continue to update it along the way with new insights from our journey with Leah. We hope to be a support to others in a similar circumstance. We'll walk beside them down this "Road of Bittersweet".

God Is Still Holy

2010-01-12T15:49:00.000-08:00

God definately used music to speak to my heart and calm my fears during our season with Leah. You Are Still Holy, was one that I sang to Leah to help us both remember that no matter what comes our way, God IS still Holy.

You Are Still Holy

lyrics by Rita Springer
http://www.youtube.com/watch?v=02UQUKKk_Lo

Holy, You are still holy
Even when the darkness surrounds my life
Sovereign, You are still sovereign
Even when confusion has blinded my eyes

Lord, I don't deserve Your kind affection
When my unbelief has kept me from Your touch
I want my life to be a pure reflection
Of Your love

And so I come into Your chamber
And I dance at Your feet, Lord
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
You are still holy

Holy, You are still holy
Even though I don't understand Your ways
Sovereign, You will be sovereign
Even when my circumstances don't change

Lord, I don't deserve your tender patience
When my unbelief has kept me from Your truth
I want my life to be a sweet devotion
To You

And so I come into Your chamber
And I dance at Your feet, Lord
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
I belong to You

And so I come into Your chamber
And I dance at Your feet
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
I belong to You
You are still holy
You are still sovereign
You are still holy, Lord
You are still righteous
You are all-knowing
You are still holy

Remembering When it was the FOUR of us

2009-12-28T15:03:00.001-08:00

Half A Year

2009-12-27T13:47:00.000-08:00

Today marks 6 months since Leah died and went to Heaven!

Just The 3 of Us This Christmas

2009-12-26T16:26:00.000-08:00

Christmas Gifts

2009-12-26T12:46:00.001-08:00

I received this sketch of Leah, in a large beautiful frame from my sister. This is my absolute favorite picture of Leah!

Leah's Smile

2009-12-23T14:34:00.000-08:00

This video is from when Leah was 3 weeks old.

A Year of Tears

2009-11-12T16:56:00.000-08:00

Today marks exactly one year since we had Leah's 20-week ultrasound. It marks a year of knowing we were having our second daughter, and it marks us choosing the name "Leah" for her. It also is the day that truly brought me to my knees before my God, upon discovering the news that our little baby girl had a terminal condition. The shortest summary of this reality involves words like, devastating, earthshattering, life altering, surreal, grief, and tears. Many, many tears! Thus, I have now come to call this November 12th, my Year of Tears.

I feel so many emotions today as I recall the events of exactly one year ago. I had been looking forward to our ultrasound like a child looks forward to Christmas. I was even more excited this time around, to find out if we were having a baby boy or girl. I had been counting down the days, and finally our appointment arrived. Luke, Kyla and I all got the see Leah's ultrasound, and hear the news that we were having a girl. Kyla said, "Yay - a sister. I'll teach her to play dolls and take her to the park." I had visions of my little girls, 3 years apart, wearing matching dresses. Luke looked so excited as well! We went back into the waiting room until the doctor was ready to see us. This bliss lasted for only a short while. Then I went back into the doctor's room and heard our devastating news about Leah, while Luke waiting with Kyla. The rest is a blur of tears and sorrow.

This is my journal entry from that very night:

Wednesday ~ November 12th, 2008
At today's 20 week ultrasound, we received devastating news. The little girl I'm carrying hasn't developed properly. She has a cleft lip, which we're told by itself isn't a huge deal. But in addition, the scan of her brain showed the front wasn't visible. It may not have developed. Now we are left with millions of questions. Will our little girl die in utero? Will she die shortly after birth? Will I even get to hold this precious little girl, or call her by her name?
My prayers are to the Lord, that our little girl will be developed enough to survive. That she can join our family and experience our love. I can't stop shaking and crying - still not really able to grasp the severity of what was discovered today.
The thought of a special needs child hit me first, slowly followed by the thought that without a properly formed brain, it might not be possible for this girl to even survive.
As I write this, I can feel her kicking and moving inside me. With each movement, a wave of sadness consumes me. Will I ever get to meet my baby? Will I get to hold her and kiss her? I feel a deep sense of urgency to pick out a name for her.
Lord, she is your child, your creation. She is inside me, and your arms are holding us both.

Psalm 139:13-16 says For you created my inmost being. You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; Your works are wonderful. I know that full well. My frame was not hidden from you, when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

God, You know this life already. She is your design. Help me to grasp what that design is and to trust you as I walk down this path filled with pain and sorrow. Let us praise You despite the circumstances that are beyond our control These events are within Your master plan, and will bring you glory. Now my heart pleads with you for healing of my baby. Let her be born and able to survive and function. Let her be a joy to our family and to you. I think I've picked the name LEAH GRACE JARMER!

From that moment on, God truly directed the desires of my heart and the prayers that flowed from within me. I desired time with Leah, and He gave me 99 days to hold her in my arms. I pleaded with Him for the chance to express my love to her, and to even have the miracle of brining her home to be a part of our family here. Again, He said "Yes". What we got with Leah, given the severity of her challenges, is truly our miracle.

We are all just one phone call, one diagnosis, one accident away from our knees. When you have no strength left to stand, hitting the ground upon your knees, and calling out unto the Lord of all Creation is the only way to have enough strength to endure that which is life-shattering.
While we felt God's closeness and presence in tangible ways during our time with Leah, it seems to be a different season today. We are in a season of grief and mourning, for what we have lost is so great. We have lost our future together as a family of four. As long as we're on this Earth, Leah will be missing from our family. That is a pain that won't go away, or be possible for us to get over. Yet, it is in this season of sorrow, that God appears almost silent. I believe it is during this time that He is listening to each one of my tears, carrying me along moment by moment. This is the part of our journey, where we only see one set of footprints in the sand. It's God's footprints, not mine. I wish I could hear Him as he carried me. I wish I could sense His closeness like before. But He knows that I couldn't hear Him over my sobs anyway, so He is wise in just holding me and carrying me through to a calmer, safer time, when I'll be better able to hear His voice. While He carries me, I can clearly remember what His voice sounds like, the things He's promised me, and the truths He has proven to me over this past year. My God isn't some distant ruler over my life. Rather, the Lord Jesus is my closest friend, the only one in whom I can fully trust.

I read this today, "Your weaknesses and inadequacies make themselves known to you again and again. You can't always count on other people, and you can't count on yourself. No human being can meet all your needs, especially your deepest needs.

"We are living in a broken world," states Barbara Johnson. "We see broken marriages, broken people, broken lives. There's never going to come a time when we've got it all together."

She continues, "As you go through grief, as you center your focus on what is ahead of you as a Christian, that helps you to know that what you're going through isn't going to last. You have to take a day at a time. Tomorrow may be different. Yesterday is a canceled check, tomorrow is a promissory note, but today is cash. You've got today to serve the Lord."

You are at a point where you need to decide whom you will lean on, trust, and put your hope in. Now is the time to search God's Word and hold on to this lifeline. God will meet you where you are, at your point of pain. Seek Him, talk to Him, and learn about Him. He is the only way out of despair.

Listen to God's promise to you and claim it: "'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart'" (Jeremiah 29:11-13).

So I've reached a year of tears, during which I have grown more than I ever thought possible. I have the insight now to having no fear when it comes to love. With Leah, there wasn't room to both be afraid of what lay in store for her tomorrow and to love her fully and deeply, accepting her every moment was in God's hands. That is the reality with each of us, only we don't tend to see our own lives that way. I have grown to truly long for Heaven. I better see the urgency in needing to help the poor and hurting around us in tangible ways.

I am truly thankful to God for Leah. She took a big piece of my heart with her up to Heaven, and through that process, has allowed me to gain a more eternal perspective of this life. Most importantly, I have experienced God's goodness, love and blessing amidst tragedy. There is nothing in this life that I could experience, which God will not use for His glory and sovereign purpose.

A year of tears. Leah's birth and death. Spring gave way into Summer, which gave way into Fall. Four months since I've held Leah ~ a great many more before I will again. Just as there are seasons on this Earth, so to are there seasons of the Heart. I am praying for a season of healing and restoration for our entire family. I am trusting in the One who can bring beauty from our ashes. I am awaiting His timing in this, too!

A Walk to Remember Leah

2009-09-12T13:21:00.000-07:00

On Luke's upcoming birthday, October 10th, our family will participate in a very special event. A local non-profit, Christian organization called A Butterfly's Touch, is hosting a memory walk and ceremony in honor of the precious lives lost far too early. Their mission is providing support to parents whose lives have been impacted by the heartbreaking loss of a child due to early pregnancy loss, stillbirth, or newborn death.
This was the first organization that I found when searching on the internet back in November. The director called me personally to talk about Leah's diagnosis and offer her support. She connected me with another mom in my area who had just delivered and lost her precious son only a month prior, and whom was wanting to be there for someone else in need. When I "met" this other mom, Shannon, over the phone, I learned that she had the exact same OBGYN as I had, and we'd both been referred to the SAME high-risk clinic. Her experiences had been different from mine, with doctors not respecting her wishes to carry her son Owen, whom they knew had Trisomy 18, and was not expected to live very long. Yet, Shannon is an advocate. After her unpleasant experiences at this clinic, she gave feedback to our OBGYN of doctors NOT to refer a patient to, should that patient choose to continue with their pregnancy. She also advocated that if the parent's choose to carry such a sick baby, and there wasn't anything additional that the specialist could do, they be allowed to see their regular OBGYN.
She felt the pressures of her specialists to abort Owen, and it made her journey that much more painful and difficult. Her value of Owen's imperfect yet beloved little life was not understood by many of the medical professionals she came across during her pregnancy. Shannon's willingness to speak up after losing Owen, paved the way for Luke and I to walk a much different path, only a few months later. Our OBGYN chose a different specialist to refer us to. Our specialist never even ONCE mentioned thinking we should abort Leah. Now whether me speaking up the moment that I understood how sick Leah was, prevented him from offering that option, I'm not sure. But he was able to fully accept and respect our value of Leah, and our decision to let God bring Leah's life each day that He had planned. We did not feel pressured to choose abortion of our very wanted and loved baby. As there was nothing the specialist could do for us, we returned to our regular OBGYN, and got to continue the prenatal care for several more months just as any "normal" pregnancy. It was much closer, cheaper and more convenient for Luke to attend appointments. There also seems to be a much different attitude among the specialists that deal with high-risk pregnancies every day. They are much more comfortable and experienced supporting parents who chose to abort an unhealthy baby.
I mention this part of our story, since I've learned so much about just how many families receive a "poor prenatal diagnosis" during pregnancy. You'd be shocked by the number actually. And as I’ve shared, the reality is that the number of sick babies who are allowed to be born, is less than 5% of them. With a condition similar to Leah's, about 95% of parents choose abortion. This statistic fails to mention that so many of those 95% were wanted children.....up until the bad news, and in many cases even with the bad news. 95% of patients with news like us, do abort their baby between the 20 – 26th weeks. That’s 5 and 6 months along mind you, and the mother has already been feeling that little one squirming and moving around for months! Most families have already begun a nursery, picking out names, going shopping for baby items. Those families fully understand they are carrying a new life, and that it is already a little baby. And they are already fully in love with that little one. It’s a heartbreaking reality that the medical field is even giving families options such as they are. Many families are misled into thinking an abortion for medical reasons will be less painful than waiting for their little one to arrive. From what I’ve learned and experienced, I don’t believe that’s actually the truth. Yet, the doctors’ advice is given purely on a medical level, and not on an emotional or psychological level. The medical world is offering families NO emotional support or assistance in understanding the realities of caring for a disabled or sick child. We were told that Leah would die.....PERIOD! We were given NO recourses, NO ONE to talk to, NO websites to visit, NOTHING! We were told to simply come back in when the baby stopped moving!

I've also learned that the medical world seems to offer the worst case scenario for families. They only give families the statistics. They don't themselves possibly even have the most accurate information of just how far these "dying" babies can truly go. We've learned of babies like Leah who have lived into their teens. We've learned the limitations of medicine and tests to predict what any given child will or won't ever be able to do. We've learned the importance of holding onto HOPE, in a seemingly hopeless situation.
The medical field offered us NO HOPE for Leah, both during pregnancy and during her life. Because of this scenario, many, MANY families feel that the medical advice of aborting their baby, is in fact in the best interest of their little one. They are told that their child will suffer, have no "quality" of life, and eventually die. Who'd voluntarily sign up for that! NO ONE! Yet, EVERY family I've come across that has continued with their pregnancy saw incredible value, love, joy and blessing. Some of these same children are blowing away doctor after doctor by what they can accomplish. Some of these children did have VERY brief lives. But I'm also amazed at how many of these very sick babies were brought alive into their loving parent's arms before going to Heaven. That scenario alone was "Not the most likely outcome" according to the specialists. They were telling us these babies are just too sick to survive birth. And truly some don't. But why can't they tell the heartbroken families that so many of them DO make it to term? So many of them DO survive birth. So many of them DO get to meet their parents and siblings, and grandparents. They get to experience love, and their families get the opportunity to give it. There often is enough time to create memories, take pictures, create keepsakes, sing your new baby a lullaby.

Prenatal Partners for Life
For Luke and I, the decision to continue to carry Leah was already made long before she was brought into our family. She was loved, and wanted and valued.....NO MATTER WHAT! Finding support was the challenge. There is one organization that I'd highly recommend to ANYONE who has just received any type of "bad news" during pregnancy. I'd encourage you to bookmark this site, and have it ready for the next family that God brings your way in a similar situation to us. Each of you has become involved with our journey for a reason. And already, I’m getting emails from some of you saying, "This sounds sadly familiar to your Leah".

The organization is called Prenatal Partners for Life. This non-profit met our family exactly where we were in November. Their goal is to provide information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising a child with special needs after birth. They offered us HOPE, and the stories and support of so many others choosing life for an imperfect but loved child. The other message they bring is that you are not alone in this journey. I'll be adding Leah's story to their site in the coming months, as our family wishes to share our hope with others.
http://www.prenatalpartnersforlife.org/

A Butterfly's Touch
The other organization that I found, happens to be local. They share the compassion of Jesus Christ by providing support to parents experiencing infant-loss during their time of need. They accomplish this by providing memory boxes and remembrances for the parents, providing information and support through our free lending library and helping to lessen financial burdens through a fund to help with funeral and burial expenses. And like I said, they introduced me to Shannon. That relationship alone has brought me so much healing and compassion. Being a few months ahead of me in this journey, Shannon knew exactly what I was going through, and she wasn’t afraid to reach out in love. She brought me gifts for Leah at Christmas. It was her lavender blankets and clothing that Leah was wrapped in at the NICU. She gave me a CD of music that addresses the loss of a baby, which has become my soundtrack over the past year. The songs bring the tears, but they help me to know that I’m not alone in my loss. Others have felt this same pain, same emptiness and know the reality of how much harder grief gets in the months after loss before it ever gets easier. It’s funny how much support it shown to one grieving that first month, while at that time the shock is still in place allowing that person to simply function. As the months begin to pass, the shock wears off, and the feelings are felt with a new depth, overwhelmingly, life altering and all consuming reality. No one, except Shannon, told me it’d hurt worse 3 months down the road, than it did the day we lost our babies. She also has a 4-year-old child, so she’s having to juggle grief with raising a preschooler. Shannon also made Leah’s little name bracelet that looked so cute on her cubby little wrist. Her phone calls checking up on me during the pregnancy, and her willingness to reach out to me in true empathy has been priceless to me. If it weren’t for A Butterfly’s Touch, I wouldn’t have met Shannon.
A "Walk to Remember"
Remembering Little Lives Lost

Join us in this FREE event for families honoring the memory of the nearly 875,000 babies who die each year through miscarriage, stillbirth, or newborn death.

Participate in the one-mile Walk to Remember,
make a scrapbook page for our memorial album,
visit with others during the dessert reception,
and help us honor the little lives lost at our memorial ceremony.
Saturday, October 10th
9 AM - 12 PM
Valley View Church
11501 SE Sunnyside Road, Clackamas, OR

Our family will be walking in Leah’s honor at this event. It will be a small event, as it’s the first one this group has ever held. There will probably be a handful of families, excited but cautiously coming together, unsure which emotions will be stirred at any given moment. Yet the purpose of this walk is simple: Come and remember your child! It’s an event to invite others to, so I am inviting each of you. If you’d like to join us in remembering Leah, please come! If you’ve lost a little loved one, or simply lost a little one whom you loved – Come! I now have met faces to match the statistics of just how many parents lose a baby. One in four pregnancies ends in miscarriage. Seventy-five percent of fatal deaths of infants occur in the first twenty weeks. These numbers are staggering. Why then are we made to feel that these losses are relatively uncommon and that only a few people experience them? These statistics translate into empty arms, broken hearts, and many childless parents.
Many of you have been heartbroken from a miscarriage, knowing full well how few others know the depth of your loss. If you’ve lost a little one, even many years ago, and you’d like an opportunity to share the reality of that precious life that has forever changed yours, though few others even knew they ever existed – come! You can come and share as much or as little of your story as you’d like. There will be an opportunity to make a page about your child for the group’s album. If you have no pictures of your baby, you can bring a verse, or a poem, or simply a letter to your unborn child. We got the opportunity to meet Leah before she left us, yet so many other parents never get that chance.
It’s not very often that someone else will ask you about your child, who’s now in Heaven. On Saturday, October 10th, from 9am – noon, you can choose to remember a precious life that you cannot hold in your arms today, but whom you hold so tightly in your heart.
So many of us know other’s who have lost a baby. Please tenderly pass the info about this walk onto them. I know it is of the most sensitive nature, but you might be surprised how appreciated the mentioning of their loss is. It seems to be forgotten by others so quickly – yet it is a loss they will feel for their entire lives. Many people have so much love and compassion to offer others as a result of their experience of losing a baby. The Walk to Remember will be a time for remembering, healing and sharing the love of little lives that were far too short.
If you feel at all interested – come! The life of each baby is significant and worth remembering!

All the information you need is found here: http://www.abutterflystouch.org/events.html

Thoughts About Heaven, Grief & Missing Leah

2009-08-20T13:19:00.000-07:00

Today Leah would have turned 5 months, if she were still here in my arms. Yet even using the past tense doesn't feel correct as I write it. How does this work? I know Leah's alive in Heaven....so then should I use present tense? Leah is 5 months old? This complex grammatical question is a perfect illustration to the problems our human minds and hearts have in the face of profound loss. And as a Christian, it brings answers, yet even so many more questions about the realities of the promises of Heaven. If I know not how to correctly wrap my mind around something as simple as grammar, how then can my heart handle the unknowns about the very real and eternal kingdom of Heaven?

My thoughts about Heaven do not exist to merely make me feel "better" after my baby girl has died. I have poured so many hours of my life over this past year to create what I desire to be an accurate theology of death and Heaven from the Bible. I fear far too many in this world choose their beliefs from a source called "personal comfort". They will dwell on and think about those thoughts and ideas that make them the most comfortable. Yet, Heaven is a core tenant of Christianity! This truth exists in the Bible, and has been accepted and counted on by Christians through the ages. We are told that Jesus Christ alone has overcome death and is the only source of eternal life in Heaven.

Do you know if you'll have eternal life with Christ? That is a question no one but YOU, can answer for yourself. I know with 100% confidence that my faith is genuine! I've granted God access to ALL areas of my life. I strive to let God's priorities and goals become my priorities and goals. My confidence comes from a personal relationship with Jesus Christ.

I had to write all of this before entering into the topic of grief. While with a true and real hope of eternal life in Heaven, I do not grieve as one without that hope. I am not merely making up ideas to fit into my grief that make me feel warm and fuzzy. Even with the hope of Heaven, so few of my feelings would I describe as warm and fuzzy. There is however a real and genuine longing to be with the Lord in Heaven - to leave this broken world and the pain of death behind!

Here are my latest thoughts about grief. Many are my own, and others have become my own after searching out encouragement from others grieving the loss of their children.

God is with us as we grieve, but He doesn't immediately take away or prevent us from our grief. He created our deepest emotions of both love and sorrow. He is with us as we experience both!

Grief is never clean. People feel misunderstood, feelings get hurt and wrong assumptions are made all over the place.

I fear people would be truly worried if they knew just how many tears I've cried over the past year.

I have the experience of knowing what it felt like on the outside, before grief touched my life. I know how helpless I'd felt. I wanted to simply fix things for those I watched suffer loss, but I knew that none of my words would take away their pain. That reality made me feel unsure of WHAT gesture to even offer. I'm embarrassed to share how many times that uncertainty led to no action at all.

I can remember how on the outside, I really only had a small capacity for the grief of others. That is because, it was not MY grief. Yes, I've shed tears, on many occasions upon learning of another's loss. However, each time, my world has continued on!

I've now learned that a knowing look and a LONG loving hug is perfect 100% of the time, because there simply are not the RIGHT words! Saying "I can't even begin to imagine what you're going through.....I'm so sorry!", is however a great place to start!
My new best friends have become other mother's who've lost their babies. While I've yet to attend any formal support group, I'm doing what I'm best at - I'm networking! I've called up and emailed a handful of these new friends over the past 7 weeks. I've gotten together with several, and gotten to sit, share, cry and hug another woman who's stood where I am today. I've learned from others who have experienced losing their child, that it's not a process with an end, but rather a journey with many twists, turns, bumps and tears. Even the professionals describe the OBJECT of grief as not to get over the loss or recover from the loss, but rather to get THROUGH the loss. Over the years you will look back and discover that this grief keeps teaching you new things about life. Your understanding of life will just keep going deeper. Your dependence upon the Lord can become more genuine and absolute.

Our culture lends itself to a much different reality of getting OVER loss. It teaches that you can simply replace what has been lost. That concept may be unknowingly behind some of the well-meaning comments I've had recently on the topic of simply having more children. While we still are waiting for genetic test results, I've been told there is a 90% chance Leah's HPE is genetic. This reality brings with it, it's own dimension of grief over the strong possibility of being advised not to have any more biological children.

Our culture also seems to teach that grief is a much faster process than it really is. Many who subscribe to this idea, when faced with their own loss, tend to neglect their own grief and fail to put much real WORK into the process. The process may be stuck in one of the more painful parts of the journey, never having been allowed the emotions to arise, tears to be shed, questions to be asked - all the things that help bring it along farther down the road where healing finally comes into the process.

As a outsider to the process, and only more recently switching roles to that of the bereaved, I have a few more thoughts to share. These are on my behalf, but also these are things that I'm learning and plan to implement down the road when I see someone else in need. These idea are from another parent in my "club":

When you learn of someone's loss,
Now is the time you are needed.
From today forward begins the hour for which you have been placed in the lives of those grieving.

Do not hide behind the notion of giving them their space. While it was much easier to understand your role before now: friends
Your role now- although less defined- is just as important:
a shoulder to cry on, another phone call, another note, a listening ear, a box of tissues given in love.

Not just this week. Not just this month. But for this life.
You will be the ones that remember, that cherish the life lost, with those who miss that life the most. For when one person is missing, the whole WORLD seems empty, for much longer than you might expect!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Twins Update

In my last posting, I introduced you all to my dear friend Shanna, who was pregnant with twins. Only days after their grandfather unexpectedly passed away, Landyn and Larsyn were born on Friday, July 31st. Landyn's earthly life consisted of 3 beautiful hours in his parent's arms. His twin sister Larsyn is a source of joy and comfort to her grieving family. Shanna's husband Keith lost both his own Daddy and his only son the same week! This family would be so blessed by your prayers as well!

If nothing else, please visit their site simply to see a lovely photo of the twins as they embraced eachother! Landyn's face is hiding, but it looks just like our Leah! What a unique and lovely face!

http://www.caringbridge.org/visit/landynandlarsyn

How Am I Doing?

This question is even more complicated in my mind to formulate an answer to, than the simple grammatical question I opened with. When you ask someone "How're you doing?", I know it's just a cliche, but I'm guessing you have a basic idea still of what you are asking them. For me, I could find much better questions, that I am actually able to answer.

Am I still alive? YES!

Am I getting out of bed each day? YES!

Am I smiling again? YES!

Is our family doing fun things together, and actually enjoying these things in life? YES!

Do I feel more rested? YES!

Do we feel grateful for the time we had with Leah? Yes!

Yet, at the same time.....I feel the reality of how unfair life is! Ask me if I only wanted 99 days? Ask me if I'd rather see Leah smile than smile myself. Ask me if I miss being awake nearly around the clock for 3 months, feeding my disabled child every 3 hours with a pump, measuring medication after medication, surviving in a state of utter exhaustion. Ask me if I miss realigning my entire life to help Leah fight for her next breath. Ask me what Kyla misses most about her sister. Ask me about my most treasured keepsakes or memory. But please, just ask me about Leah! Her name is not off limits. Her name brings me an indescribable amount of joy, and yes, along with hearing it, right now come tears too! Please don't be afraid of my tears. You didn't cause them! I know they make you feel uncomfortable...and for that I'm sorry. I know that someday you'll have tears of your own, and I hope to be the first to come hug you and hold you as you let them flow!

Life Without Leah

2009-07-14T17:31:00.000-07:00

It's now been 2 1/2 weeks without Leah in our arms....and life will definitely never get "back to normal". We are however pressing forward as God helps us forge yet another "new normal", that that means life without Leah.

We had a beautiful memorial service on the 4th of July, in which we were surrounded by so many friends and family showering us with their love. The stories shared of how deeply our precious Leah impacted different lives for the Lord were so moving. I don't think there could ever have been 2 parents more proud than Luke and I felt on that day.

Part of this journey with Leah, has brought me into a place of offering love, support, prayers and encouragement to others who are walking this same path...only a few steps behind us. I've become close with a woman from Georgia, named Shanna, whose story is far too similar to my own. Yet, her story is also unique. Shanna is the mother of 3 girls, and pregnant with twins, a little girl, and a little boy. The little boy, Landyn, has the same condition as Leah, and in fact even has some more severe challenges already known, than what was known about Leah prenatally. The medical professionals do not expect him to live after birth, but his twin sister Larsyn, is however expected to make it. She is less than a week away from delivery via C-Section....hoping to carry both babies to a live delivery.

Shanna and her two babies have been on my heart so heavily since Leah passed. It's been as if God has been telling me, "Leah no longer needs your prayers.....she's absolutely perfect now...but Landyn needs your prayers." Landyn's family needs ALL of our prayers! Please visit their caringbridge site, and if your prayer times have felt a bit more empty without prayers for Leah, please fill them with prayers for little Landyn in Georgia.

I hate knowing EXACTLY how Shanna is feeling, because they are feelings I wish no one ever had to experience. But I've also felt the surpassing grace of God, as He's showered it upon me in my times of greatest weakness and most immense need. I know that it is through the prayers of all of you, that God orchestrated all the events of Leah's life....each and every moment, each and every seizure, each and every heart that was touched because of her. It was because of this same God, that I was filled with joy during Leah's memorial service, truly able to say I felt more happy than sad, as I remembered and shared my love for Leah with all those in attendance. Maybe I was just all cried out by the time the service started, but I do know that the experience of Joy amidst the Pain of Sorrow, are possible with God.

Thank you for letting me share about little Landyn with each of you. I know that God has allowed you to find a place for Leah in your hearts, and because of that there must also be room for her little friend, Landyn, who shares with her the poor prenatal diagnosis of alobar HPE.

Click on the link below to visit the twins' CaringBridge site:

http://www.caringbridge.org/visit/landynandlarsyn

Leah's Memorial Service

2009-06-29T18:34:00.000-07:00

The life of

Leah Grace Jarmer

will be honored on

Saturday July 4th
10:00 AM

at

Boones Ferry Community Church
20500 SW Boones Ferry Road
Tualatin, OR 97062
503-692-5140

Eternally Healed

2009-06-27T15:16:00.000-07:00

Saturday, June 27, 2009 3:16 PM, CDT

Leah went to be with Jesus, peacefully at 7:00 AM this morning. She was asleep in her Daddy's arms and simply took her last breath. She was 99 Days old today, and we praise God for each and every moment of her life.

God's goodness is being seen so clearly by our family regarding Leah's passing. It was perfectly good in every way! I believe God was preparing my heart for this yesterday, as I spent time alone with Leah telling her about Heaven. As my tears fell, I told her it was OK, whenever she needed to go. Heaven for Leah brings peace and healing to her little precious body. Yet, it leaves Mommy with tears, as I will miss my little bundle!

As Kyla left our house to spend the night at Grandma's yesterday, she kissed Leah saying, "Good bye Leah! I will always love you. I will love you here and I will love you there (meaning Heaven)." Kyla's goodbye was perfect, and getting to witness it brings joy to my heart!

Leah Grace has made a bigger impact for the Lord in her 99 short days of life, than I know I've made in my 27 years. I am so proud to be her Mommy.....and so thankful for God's promises which are being fulfilled in my life.

Thank you for your continued prayers and support as the days to come will be full of grief, sadness and yet I believe also joy as well!

Leah is with Jesus, and for this we give God the glory and praise, and say "Thank YOU!" from the bottom of our grieving hearts. Leah is eternally healed!

Happy Birthday Leah - 3 Months!

2009-06-22T14:55:00.000-07:00

We had a beautiful birthday party for Leah on Saturday - her 3-month birthday! God has given us so much more time with our precious Leah than we ever expected would be possible. Leah received many lovely gifts....my favorite was the pretty dresses from Grandma! We've hung them up around Leah's room, as an expression of the true Princess she is.

Then Sunday we celebrated an extra special Father's Day. Leah's Daddy has been the most amazing Father these past months. His devotion to the Lord, unchanged; his patience seems unending; his composure in the face of such an intense medical situation truly humbles me.

Leah started a second seizure medication, Keppra, per our request last Friday. The neurologist says she doesn't expect it to help, but we're at least going to give it a try. The dosing is increased over 3 weeks, so we're hoping to see even the slightest bit of improvement for Leah by the end of that time. Leah's also starting to get some formula mixed into her feedings, to allow mom to back off on the round the clock pumping. We're praying she does well on this transition to all formula over the next few months.

Leah had a wonderful visit with her pediatrician last week. The wonderful part is what a great doctor we're seeing. Leah is still Leah, but this doctor is full of care and compassion for Leah and our entire family. At 3 months old, Leah now has grown from her birth weight of 5lbs. 11oz. to 10lbs. 2oz. Way to go Leah! When you take of all her clothes, it's easy to see where she's hiding all of those pounds - in her thighs and arms. She looks like a cute little chubby baby....whose food has definitely been agreeing with her.

I'm excited for Leah's nurse to come tonight (Monday's -Thursdays), as after three nights of so very little sleep for both Leah and Mom, I'm ready to entrust her into very capable and loving arms while I sleep.

3 months with Leah is an answer to all of our prayers. Should we begin praying for 3 more??

A Great Week

2009-06-15T11:29:00.000-07:00

So, this past week we took a break from in home appointments, specialist appointments, insurance phone calls, etc. It was a much-needed break from all of these stressful parts of caring for Leah. This was in addition to having Leah's nightshift nurse here 4 nights, which allowed Mom and Dad to catch up on rest.

Monday - Grandma Powers came for the day
Tuesday - Both girls got to go to the park
Wednesday - Both girls got to go to the Library for storytime
Thursday - Playgroup was at our house, with our friends surprising us by planting flowers in our front yard!
Friday - Friends over for dinner
Saturday - Relaxing day together as a family
Sunday - Celebrated Grandma Powers' Birthday at our house

It honestly felt like a pretty "normal" week. Leah's new medication, Clonodine, allowed her to get lots of extra sleep for even a few hours at a time. Her seizures are still very frequent, but at least while she sleeps, by default, she is able to get a break from the seizures.

We are getting ready to celebrate Leah's 3 month birthday this coming Saturday! I am throwing Leah a birthday party, and feel so excited to look back and see the 79 days God has given us with Leah in our arms! Our prayers before her birth were for even a few days....maybe a week! And we have gotten so much more than we were told would be possible.

On the medical side of things, we're moving forward (slowly) with plans to assess Leah's readiness for a permanent feeding tube to be surgically placed into her stomach (called a G-tube). It's still hard for a doctor to predict if she's strong enough for this surgery, or if it would be too much on her little body. We're reaching a point where having the tube through her nose isn't a sustainable option. It keeps coming out for one....she's really good at pulling it out and spitting it up and out. It's meant to stay in for a month, however Leah's average is one per week, with last week requiring 3 new tubes to be placed (Mom even did one!!). It increases her risk for aspiration, damage to her nasal tissue and possible infection. So, we've made an appointment for the end of July to meet with a Pediatric GI doctor, who'd be able to book the surgery August or later...if he's comfortable operating on Leah.

Our family's list of prayer requests, must start out with our long list of praises to God, for all the support and love from those around us.

- Leah's concert was beautiful, and raised around $4000 for her medical bills
- More friends have stepped up to continue proving meals and housecleaning
- Leah's Pediatrician's office brought by a Goody Basket yesterday, including the offer of several staff to watch our girls while Mom and Dad go out to dinner!
- Beautiful flowers planted in our front yard
- A wonderful nurse to help out at night, who has personal experience with a difficult pregnancy and hospice experience, who is also a Christian
- Help from family and friends to watch Kyla and take her on outings

We have never before felt so overwhelmed and loved by others. My prayer is that each one who's blessed our family with their thoughtfulness and generosity, is in turn blessed for their acts of love. This journey has felt much easier with everyone's support!

Leah is still Leah, with all of her challenges. God is still God with His amazing power and goodness. Yet, I see my mind and heart changing so much through His work in my life and the beauty of the body of Christ ministering to our family at this difficult time

Leah's Update

2009-06-06T11:59:00.000-07:00

Ok...so here's the exact link to Leah's TV interview which aired Friday night (one night late due to the storm coverage on Thursday):

http://www.koinlocal6.com/content/mediacenter/default.aspx?videoId=11072@koin.dayport.com&navCatId=156

Video EEG Seizure Study Results
Ok, so I wanted to update you on Leah's video EEG results. We met with the neurologist yesterday in her office instead of by phone because the news was so bleak. We were basically told that yes, all of the behaviors we were calling seizures, really are seizures. She was thinking there had to be a motor movement disorder occurring with the seizures, which would explain Leah's survival of 70 days. But with the study showing that the seizure activity is truly pretty continuous in her brain, and also in her body....here's EXACTLY what she said to us.

Giving Leah seizure medications is like giving her water. With a brain malformation like Leah's, she's guessing her receptor sites are not able to be bonded to by the medications to work to control or even minimize her seizures. When we asked if it was worth a try to at least give a medication other than the 5 ml of Phenobarbital that she gets at bedtime she told us in her honest opinion...NO...it doesn't even make sense to try. Then, after saying that, she recommended admitting Leah to the hospital where she would be given a lethal dose of Adavan to cause her to pass away. From the shock on our faces, she then said we could take her home and stop feeding her....and in her opinion this is a very peaceful way to die. "Her mind will just get fuzzy, and over a period of time she'll pass away."

The feelings of sickness inside me at this medical "advice" is so great! The leading expert is essentially telling us she thinks we should just put Leah out of her misery. But the reality is, I honestly feel like Leah hasn't suffered at all....it's us who are the ones suffering as we watch her body STRUGGLE! We know that seizures are not painful to Leah....she's just not aware during them. She has many alert moments in between them and she's really with us at those times. When we told her immediately that those two options were not conversations we'll be having with her, and what else could we talk about in regards to helping keep Leah comfortable, which in my opinion includes her need for sleep more than the few hours a day she's been getting it. If the seizures in the dr.'s opinion are not able to be helped at all, then what options are we left with to even let her body rest. She wrote a prescription for Clonodine...a blood pressure med, that in smaller doses is given to help relax children to allow them to sleep. So....we'll fill that today and see if she's able to get more rest.

This much we know.....her seizures do seem to be getting worse. And it's most likely that there will just be one that she isn't able to pull through or come out of. But today, she is here, and her life matters and is of value to us. She still is contributing and her purpose here is not quite done yet.

No one wants to hear a medical professional say, not only is this the worse case of seizures I've seen, and I'm not willing/able to help at all....so I think you should choose to utilize assisted suicide.

The grief is hitting so hard, and so deep, and while all hope is not gone....the medical side of it might we might be through pursuing. Since the medical side says she needs to die, and by our own hands...That is not where are hearts are as Leah's parents! We will let Leah live as long as she's meant to.

The rain is pouring down outside my window, and it matches the tears pouring down my cheeks. I am feeling a bit more rested, as we had in home nursing the last 3 nights to allow mom and dad to sleep. They'll be coming back Sun-Thurs. nights next week as well.

Leah's concert tonight will be a wonderful celebration of her life and the lives she has touched. And from the response I've already received about attendance, the number of lives she has touched is incredible!

Leah's TV Interview

2009-06-04T11:17:00.000-07:00

A story about Leah will be aired tonight on the 5:30 KOIN 6 Newscast, under their Health section.

You will also be able to view this story on their website at http://www.koinlocal6.com/content/healthwatch/default.aspx
or so I'm guessing. If I get the link wrong, I'll repost it.

Tualatin Times Article
We also got interviewed this week for the local paper:
http://www.tualatintimes.com/news/story.php?story_id=124408039674470200

This morning Leah slept peacefully during the entire interview as she'd received extra seizure meds before they arrived. It's been a quite and restful day for mom today, as Kyla is still overnight at Grandma & Grandpa Jarmer's house. Luke and I will be heading back to our Neurologist's office today to go over the results from the Video EEG (seizure study) which she had yesterday. It was honestly a harder study for Mom than it was for Leah. Leah just did what Leah always does...have many MANY seizures. So many in fact, that the nurses working during the test kept looking so concerned and saying, "I've been doing this 15 years, and I've NEVER seen a patient has as many seizures as Leah - and yet she's still here!" The miraculous part is that she is surviving inspite of her condition. This seems even more miraculous than complete healing in my mind, as it must bring God so much glory.

The hard part for Mom, was that it was the first time since being in the NICU where my entire focus, was 100% on Leah and only on Leah. My job was to push a button each time she seized, and the button was pressed over 75 times while we were there for less than 5 hours of the study. The nurses comments about Leah's seizure and her condition's severity reopened the grief, which although experienced daily on some level, was experienced to the greatest depth yet during and after the test. With Kyla gone, and Luke caring for Leah, the tears and the full body pain came on so strong as I had a few moments to myself last night. This isn't someone else's life...this is mine. This isn't someone else's pain that I'm watching from afar, this pain is mine. Few others can relate and truly empathize with the depth of hurt, and the fear of what is still yet to come, and the intensity and realities of caring for a disabled child who isn't expected to live long. In my mind and heart, based on the doctor's expertise, Leah has been dying since November 12th when we received her diagnosis. This journey has been long, and full of so much grief, but also the joys of seeing Leah surpass the odds set before her.

Our family was also blessed yesterday by a large cleaning crew, who exemplify the true body of Christ, as these ladies cleaned my house with more love than is imaginable! The list of the chores they accomplished on our behalf in merely one day amazed me! With beautiful flowers left in every room, it was exactly what I needed to great me after the hard day at the hospital with Leah! Our home is cleaner today than it's ever been, and the feeling of being cared for and supported have now been experienced in an even deeper and more tangible way!

Last night Leah had "tummy time" while mom and dad chatted about her and attempted to form future plans for her care. We decided to only focus on next week, no farther as there is too much unknown. Yet, while we watched her, I felt the deepest sense of pride. I feel like she's a gold medal Olympian, and I'm the proud mom cheer her on as she received her medal. Despite all she can't do, when you consider her lot in life, I am in awe of what she can! She can lift her head up off the floor, move her head from side to side, pull her knees up underneath of her, push her feet against your hand and scoot forward. She is stronger than I, and I fully know that! Her inward spirit must be comparable to that of a great hero! She is fighting so hard, and with such grace and beauty, as she continues to stay with us. Her purpose here is not complete, as she is teaching us daily, and melting hearts near and far.

~ Those who suffer have the right to minister. Only they know the deep painful longing of an aching heart!

9 Weeks Old

2009-05-30T14:34:00.000-07:00

At 9 weeks old, Leah is growing, but still facing challenges from many different angles. She's most likely been aspirating, meaning she's getting fluids into her lungs, which is getting infected (the makings for aspiration pneumonia). She will start her 3rd round of antibiotics in as many months. With being sick, she's spitting up all her feedings again, which brings up her medications, which brings us back to where she was last month with her last illness.

This has been one very busy and complex week for our family. After seeing a new Pediatric Neurologist last Friday, Leah will be having a Video EEG study at Emanuel Children's Hospital on Wednesday, June 3rd. This test will video tape Leah and Mom for 6 hours, along with recording her brain waves through 20 probes stuck onto her scalp, along with Mom pushing a button when I believe she is having a seizure. This will gather a wealth of knowledge about Leah's various seizure types, and the behaviors that we're seeing visually from each type. This will help be a guide for possible new medications to help manage the seizures to get Leah more comfortable.

The bummer is, that in order to do this test, we cannot be on Hospice. This is a very subjective issue, however having additional tests on Leah doesn't fit with the typical parameters of hospice. The reality is we are still providing Leah her end of life care, and as her parents we consider finding out how to best control her seizures as a part of providing her comfort care, as it will not truly prolong her life. So, come Tuesday, we will need to transfer all of her medications, pump rentals, durable medical supplies over from hospice, to our own insurance. This feels like a bit of a head ache that we hardly have time to focus on admits Leah being so sick and getting ready for her test.

The other bummer, is that the in home nursing assistance that we finally got lined up started this week, was being provided through hospice, and so that goes away too. We're working out the details of switching that over to our own insurance too, but everything with insurance takes WAY longer than it should.

We're also putting heroic efforts into finding out what programs and services Leah qualifies for. We've been denied by Social Security Disability Benefits, denied by the state Medically Fragile program, and are unsure of where else to turn. We did finally find out that Leah's been accepted into the Washington County Developmental Disabilities Program (so we feel like we're winners, only we have NO idea, what services this could possibly provide for us. We'll call Monday and start this process! We're calling every organization that we know of and applying for them all, starting down a dozen different paths hoping that at least one will help provide financially for Leah's medical care needs.

On this topic, we feel that the best case scenario is for Leah to be able to get onto the state medical insurance program of Medicaid, which would be a HUGE help. She could get every/all tests, specialists, medications, medical rentals, diapers....all covered! That would free us to simply care for Leah, not to be spending hours a week on the phone fighting with our insurance to figure out what needs to happen to make things happen. We just learned this week that we can request a Case Manager with our own personal medical insurance who will be our one contact for any future insurance questions (which we can expect to have quite a few from here on out.)

So...we feel like we're finally beginning to get somewhere, but it required us to move past the services offered by hospice, which is indeed a mixed blessing. We know that Leah needs additional tests and additional medications, and that isn't possible while on hospice. But we know that Leah will be going to Heaven soon, and the thought of NOT having these services through hospice is a bit scary to Mom.

This is absolutely the hardest thing I could ever imagine doing, and now that we're in the middle of it, we know that God is providing the strength. I'm providing the tears and in such great abundance some days! The constant tug between Kyla's daily needs of an energetic 3-year-old vs. the immediate needs of Leah has been so hard to juggle for Mom. We've been blessed by many visits from friends and Grandparents to help play with Kyla and get her out of the house.

We could never do this alone, and we know that indeed we are not alone! It's ironic to think that the smallest person in our home requires so much continuous attention. She is your normal newborn, with those demands, taken up to a higher degree as she is only able to seep a few hours a day while enduring over a dozen hours of seizures.

As her mom, when I step back and simply let all of those realities fade away for a moment, I am left with the most adorable precious little bundle in my arms! With her soft baby skin, beautiful blue eyes, unique smile, yummy baby smell and the most engaging little coos and cute hiccups. She's my baby girl, and a child of God, who just happens to be so very sick! I know there is purpose in the struggles we face, and while I cannot see it all clearly now, I know that God is using this in a mighty way! Our family is blessed by all of your prayers on our behalf, as sometimes my heart is so unsure of what exactly I should be praying. I know that my desire for Leah to stay here with us, in light of all her challenges, is so limited and possibly ignorant in light of God's sovereign plan. And the truth is that when it's time to say Good-Bye to Leah here, there will be so many saying, "Here she comes!" in Heaven! Yet, God has given us one more day together, and He is allowing us to care for her special needs. It's for these needs that we ask your continued prayer!

Please pray specifically for these following things:
- Leah could recover from her respiratory infection quickly
- We could coordinate overnight nursing assistance several nights a week (having it was SO wonderful this past week)
- Leah could get onto Medicaid
- The Video EEG to go well on Wednesday (mom will be there solo with Leah, and taking her out for that long feels like a monumental task) Pray too I could find someone to come with me, as Luke isn't able to come.
- That the results from the test would arrive quickly, so that any additional seizure medications could be given to help get Leah comfortable with fewer seizures
- A wonderful Concert for Leah next Saturday
- Tuesday morning interview with Koin 6 News about Leah (most likely airing the following night, but I'll let you know as soon as I find out for sure)

Leah is 2 Months Old!

2009-05-20T16:01:00.000-07:00

She now weighs 8 lbs. 1 oz., which means she gained over a pound in 2 weeks since her last appointment. Way to go Leah! Some days Leah's been able to get sleep, and other's are still leaving her "Sleepless in Sherwood"~ as the moment she falls asleep, a seizure wakes her up.

We are so excited to announce, that in answer to our prayers for some respite, we have been approved for 3 nights a week of private duty nursing. This should begin next week! We also will be seeing a new Pediatric Neurologist tomorrow to see if there's anything additional we could be doing to help manage Leah's seizures.

We are getting much more comfortable juggling Leah's various medications, using the pump feeding system, replacing Nasal Gastro feeding tubes (well, Luke is anyways!), and pronoucning big, long medical terms.

It seems like Leah will get some time in the spotlight between her upcoming concert, a brief article in the June 4 edition of the Oregonian's Washington County Weekly, and we just got a call from Koin 6 news, to tape a short piece about Leah. We are awestruck, that all of these opportunities to share Leah's story, and the mighty work of God, have come to us as we are home focusing on caring for little Leah. We are praying for God to be glorified through all of these various opportunities to speak of how He is the author of Leah's life, and how He is providing our family the grace and strength and support from all of you, to face this challenge head on!

My prayer from day one of our diagnosis during pregnancy, is that as we walked this bittersweet road with Leah, God's goodness would be the most prominent part of our story. And that through our pain and trials, God would bring us and others closer to Himself.

Benefit Conert For Leah

2009-05-14T16:13:00.000-07:00

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Voices of Hope Choir
Saturday, June 6th, 6:30pm
http://www.voicesofhopechoir.org/

Creekside Bible Church
22100 SW Grahams Ferry Road
Tualatin, OR 97062

The Concert is free, and a love offering will be taken for Leah's Medical Fund.

We are blown away by the love and support we've received from our community! We just found out that a local choir will be holding a benefit concert for Leah in just a few weeks. They've never even met Leah, but they have been keeping our family in prayer for months just like many of you. And now, they are wanting to help by holding this concert to bless our family and show their support! God is doing such big things in our community through my little girl. As I hold her in my arms and watch her body fighting so hard, it's incredible to think that she is fulfilling her purpose. Even though she's only been out of the house a few times, and mostly to go to the doctor and church, she's touching so many hearts who see the value of life- her life - simply because she's a child of God.

Leah's been doing "ok", which is a word I use very lightly considering the truth is she is still so very sick. We found out last week, on her last blood draw, that her seizure medication levels were running low. This means that they are not at a strong enough levels in her body to be considered therapeutic, and as a result we've recently increased her doses. The most immediate effect has been that Leah's been extra sleepy. It's been great seeing her body at rest from the seizures, and watching her sleep so peacefully for hours at a time. With her sleeping more, we've been able to get a bit more sleep as well.

Each day seems so different from the one before, as Leah doesn't seem to have much ability for routine. But each day is full of love for her, and lots of hugs and kisses from her family! With most of her waking hours spent having seizures, it's hard to have much time to interact with her. So we just love on her, right through one and into the next ones that come on. It's teaching our family a huge lesson in unconditional love. She needs us, and we are caring for her out of our love, irregardless of what she's able to give us in return. She isn't able to do the things a healthy baby could.... the older they get, the more attention they pay to their parents....the milestones that the parents love to brag about to their friends. Yet, what she is able to offer us, is at such a deeper level than any accomplishments. It's at a heart and soul level - knowing that while we are caring for and loving Leah - God is using her to change our hearts. He is changing our priorities, dissolving our fears of "how are we ever going to do this?", and bringing us so closely to His face. He is saying to our hearts, that He created Leah, and He loves Leah, and she is created in His image - and she is valued by Him!

It's very easy as Leah's Mom, to have a deep sense of love for her. However, it's amazing to me to see the love and concern that hundreds of others, and many of you complete strangers, have poured out on behalf of Leah. I guess that's the "special" part of having a Special Needs child. Leah is special, she is different, and her life here with us will most likely be very brief.

I found these quotes on another HPE Mom's website, and I just love them:

"I thought I would have to teach my daughter about the world. It turns out I have to teach the world about my daughter. They see a girl who will not speak, but I see a miracle that does not need words."

Finding A New Normal

2009-05-06T20:45:00.000-07:00

Wednesday, May 6, 2009 8:45 PM, CDT

As Leah approaches 7 weeks old, our family begins striving towards finding our new normal. Her life is such a miracle, as she continues to fight to stay with us. God is definitely showering us with His grace, as we live more and more boldly each day, feeling a little bit less afraid with each milestone that Leah achieves. According to our doctors, Leah should not be 7 weeks old, and still in our arms.

Leah now weights 7 lbs., gaining a healthy 10 oz. over the past 2 weeks. This is almost what a normal baby would be expected to gain. Leah looks so good with her baby chub.... Triple rolls under her chin and on her thighs! Luckily for her, she wears it so well! Though Kyla told her Grandma that it wasn't nice to call Leah chubby (what a good big sister, already sticking up for her) It is so wonderful that Leah seems to be doing so much "better" than expected. She still faces huge challenging mountains that she climbs daily, the apnea, seizures and trouble resting. However as her sickness improved, she's keeping full feedings down again, along with her medications. We've added another medication for her Diabetes that should help her stay more hydrated. For the first time, she's had spit in her mouth, even blowing a few spit bubbles, which I happen to think is adorable! And we're adding a third seizure medication as needed, which seems to allow Leah to have more alert times in which she is such a joy to interact with. She loves hearing our voices and even responds with smiles on occasion! Kyla is the best at singing her lullabies (she's decided that absolutely any song she knows happens to be a lullaby, even Jingle Bells).

As I hold her all snuggled against my shoulder, and can smell her soft baby hair, I feel the deepest sense of truly living! Even in just a mere moment, I feel so clearly an understanding of life, and purpose and value! Leah embodies all that God values - it's not in her abilities or achievements that bring Him glory...but in the reality that her "imperfect body" truly has no choice but full submission to God's will and design that glorifies Him. How ironic, that with our "perfectly healthy minds and bodies" we struggle so much against God's design for us, but that when we draw close to the Lord, and follow His leading we bring Him the most glory. We strive for our own personal successes, based on our society's definition of success. Yet how often, these very pursuits can distract or even replace our focus on God. Admits all my sleep deprivation, God is still speaking to my heart, and teaching me through my precious Leah.

On the topic of sleep deprivation, we are learning to juggle Leah's needs and slowly trying to add the needs of our other 3 family members back into the mix. Our greatest need as parents right now is for sleep. As Leah grows, her body is getting more used to her seizure medications, therefore they are less effective. And in her first few weeks of life, she slept pretty well at night, because the heavy medications helped to knock her out. But now, her body is much more awake, especially at night, which is causing her to have more night seizures as well as periods of "normal fussy baby cries". I tell myself I need to truly treasure each moment, even these periods of Leah crying with such strength that she's red in the face (as red sure beats her turning blue)! But the reality of many nights only truly getting 3 hours of sleep for Mom isn't going to allow me to sustain this pace should Leah continue needing my care for much longer. Our greatest prayer request is for more sleep for Mom and Dad. We aren't sure how God will choose to provide that, through either Leah sleeping better, or through nighttime care assistance with Leah, or some other means. But we know that in asking, God WILL provide! The lack of sleep is taking a toll, and now I'm finding myself feeling a bit sick...and there just isn't any free time to rest and recuperate.

I have also recently discovered a Yahoo Group for HPE (the acronym for Leah's condition). This has brought me such hope and encouragement this week. There is also a nonprofit called Families for HoPE, which is a support group for families dealing with HPE. Several mothers with children like Leah have emailed me and begun sharing their experiences along a similar journey with me. One little girl, who was a miralce baby like Leah, is now a miracle 3-year-old, with the same beautiful face and similar medical struggles as our Leah. For some reason, this one precious little girl, has allowed me to dream even bigger dreams for Leah, knowing that survival past months is possible although not the most probable. As we know, nothing is impossible for our God, and He is the author of Leah's life. We are humbled by His answers to our specific prayers on behalf of Leah, and we know that even when His decision will be different than how we are praying - He'll allow it to truly be "well with our souls". Those are the promises of God to which we cling during uncertain times! In God alone can we trust

So Tiny & So Sick

2009-04-19T15:44:00.000-07:00

Leah is in need of extra prayers today! She'll be one month old tomorrow, but her tiny body is just facing even more challenges now compared to before. New symptoms have developed, including Diabetes Insipidus, which is caused by a lack of the hormone vasopressin. Vasopressin is an antidiuretic hormone that is produced by the hypothalamus gland in the brain and stored by the pituitary gland. In the body, vasopressin limits urine output by increasing the concentration of the urine. Without vasopressin, the kidneys cannot function properly and the body experiences rapid water loss in the form of diluted urine. Then in a vicious cycle, this rapid water loss causes people with this disorder to become extremely thirsty.

Our precious Leah's body is not able to stay properly hydrated, no matter the amounts of fluid she is given. On top of that she is now sick, with a very nasty sounding cough and junk in her lungs. Because she has low muscle tone, it is a challenge for her to clear her lungs, as she is not strong enough to cough productively as you or I to prevent pneumonia from settling in. And on top of that, she is not able to keep her feedings or medications down. When she spits up her medications, then all the assistance her body has been receiving the past 4 weeks to function more properly is lost. As you can imagine, this creates a vicious cycle, thus increasing her seizure activity as well.
As her parents, we know fully that we have done and will keep doing everything possible that can help Leah. Yet, as we’ve known all along, her time with us will be very brief. And now it seems clearer that her body cannot go on like this for much longer. Yet, we still don’t know if that means hours or days. In light of this please pray for the following things:
 For God to be with Leah and bring her comfort as her body may begin shutting down
 For God’s goodness to be seen even in the events of her body passing away and her spirit being received into Heaven
 Strength beyond that which is humanly possible for Luke and I, as we continue to care for Leah and watch her body struggle daily as she fights to stay with us
 For Kyla, who loves her baby sister so deeply – that she’d learn to trust God through our family’s circumstances
 That we could have God’s perspective on Leah’s life and the blessing that He has given us

Even with all the challenges of these past 5 months, I have never before felt so blessed and so provided for by my God! The Lord gives and the Lord takes away…..blessed be the name of the Lord! The words of a song by Matt and Beth Redman has become my anthem these past months. You can click here to hear it: http://www.youtube.com/watch?v=7Qp11X6LKYY
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name

Pre-Chorus
Every blessing You pour out
I'll turn back to praise
When the darkness closes in
Lord still I will say

Chorus
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Verse 2
Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Bridge
You give and take away
You give and take away
My heart will choose to say
Lord blessed be Your name

2009-04-08T15:54:00.000-07:00

Leah is 19 days old!
How precious each life is.... no matter what that child will or won't be able to do. I feel so convinced that Leah's life is truly being sustained by our prayers, as there are just so many challenges her body is facing. Yet the ability of a sick little child to impact many is so great! Each one has such purpose and through a willing family, can be used in mighty ways. It's the fear and pain that come that I've seen for myself can cause such paralysis in my own thoughts and life. Leah needs me to be strong now, but I know that I'm not strong enough on my own. God is providing the strength and support I need. I've had people volunteering to take several hour shifts to help out with Kyla, and holding Leah so that I can "rest" and have some time to myself now that Luke is back at work.
I know that you all are cheering right along with me for these 19 days our family has gotten with Leah. Upon bringing Leah home, I had expected our grieving to stop, and there to be only joy and happiness....but that was honestly not the case for the first few days. Each time she stopped breathing, I honestly felt myself bracing for it to be her last breath. The paranoid feelings took root so deeply and so quickly....how can a parent watch their child die! Our reality is that we still know our time with Leah will be very brief, and so my daily prayers for God to cast out my fears are being answered. I know her body is VERY weak, and that her condition is not curable. I know that I cannot be holding her at every moment, since I need to take care of Leah's Mommy too.....so that I can take care of her better! I know that I cannot plan the circumstances surrounding her passing anymore than I can prevent it from happening in the first place. Once again, I am at a place of pure mercy to God's control and power.
As I mentioned, Luke returned to work on Monday, and we've been able to each get several good hours of sleep each night. We've moved Leah into her own room, and are up with her every few hours, in shifts, with a few hours of "unsupervised time" for her to rest alone. It's honestly hard to tell when she's awake vs. asleep as her eyes have begun staying open while she sleeps (we think) and the seizures come on out of deep sleep now as well as when she's awake.
We just got a call that Leah's full chromosome analysis came back normal. Now we are fully shifting gears from 5 months of research and study about Trisomy-13 in which the brain malformation of Holoprosenchephaly (HPE) was secondary, to just now focusing on the HPE as the severe disability. With this condition being even more rare than trisomies it's hard to get much info about it. And since bringing her home, I've had NO time to look anything up online. My sister has sent us some things, but it seems this condition is much less clear in terms of any actual prognosis or life expectancy. It more just seems like each child can do/not things do based on their own unique brain malformation.
Kyla's now come down with a nasty cold, so now I'm trying to keep Leah from catching it, which all the nurses say could just be too much for her body to handle. Once again, I’m praying for God to remove my fear and just leave me with His peace and the reality that I can trust Him.
I am also in awe of my husband, and the leadership God has granted him for our family during this time. Luke is my best friend, and even in this, He is so steadfast in His faith that it is such an example to me. I can definitely see why God picked Luke to be Leah's Daddy, as he is so confident in providing her medical care (even reinserting her feeding tube by himself last week). He is so patient with me and all the emotions and stress I'm experiencing and so loving towards both of his little girls! I wish I could depict how funny it was seeing Luke watching a basketball game on the couch this past weekend, with Leah propped up next to him. As he ate a chip he pretended to pass one over to her....and it was just so amusing to see how comfortable both of them are together!
God is growing our whole family during this time with Leah. We are trying our best to honor Him with our attitudes and actions....and to be a witness to other's of how truly Good our God is! We are in the process of building a monument, which will be a reminder in our family's life that God is with us even in the hardest of times. And from that, we can know that there will be no place or circumstance that could come our way in the future, that He will not once again carry us through. May our story be an encouragement to you in your valley's of life. I know we all are feeling the reality and fear of these unstable economic times, and the impact is being felt harder by some. I pray God would cast out all our fears, whatever they may be. And that He's bring us His perfect peace, that He is good, and that we can trust in Him alone.

2009-04-02T18:51:00.000-07:00

Photography of Leah
http://leahgracejarmer.shutterfly.com/
Many of you have asked us to share more photos from our journey over these past 13 days. Here is a link to see more photos. Leah's Aunt Charissa took all of these beautiful photos, and they capture the love and memories that we've been able to create with Leah.
Leah had her 2-week check up with her Pediatrician today, and she currently weights 5lbs. 14oz. She is still hanging on, and allowing us more time to love her and care for her. It does feel like she seems to honestly be declining, in terms of her strength and health. Her seizures are becoming much stronger and frequent, and we aren't sure how much longer her body will be able to handle such stress. Her body isn't able to get enough oxygen during these seizures, and that is very hard on her heart.
As you can imagine, watching your own child go through this is beyond hard. We love her so much, and of course do not want to have to say good-bye. Watching each seizure come and wondering if this breath will be her last causes such anxiety and concern. We need so many continued prayers for our family's peace and trust that God is in control, and that He is with us. We're fully accepting that the best place for a sick little girl is Heaven. Yet the reality is still so bittersweet as we want more time to hold her, but can see that her body is so weak.
Also prayers for Kyla, who loves her baby sister so very much. I couldn't have imagined how deeply a 3-year-old could care for a tiny baby, and watching it is simply beautifully touching. Whenever Kyla walks into a room the first thing she asks is, "Where's baby Leah?". She wants to make sure Leah is ok. At lunch today Kyla said that she thinks Leah wants Jesus to come and hug her. She knows that when Leah dies she will be with Jesus in Heaven, but her next comment was if we could drive and visit Leah in Heaven.
Yesterday we put the girls in matching Easter dresses, and it was simply lovely! I painted both their toenails, and yes, even Leah got purple sparkles. And this morning Leah got to go to Kyla's playgroup and meet all the other Mommies and kids.
God is teaching us to trust Him moment by moment. He is accomplishing His will through Leah's life, and we are so thankful to be her parents.

Leah Comes Home

2009-03-30T00:07:00.000-07:00

Leah is HOME! We are definately feeling the joy of being new parents today, as we have had a wonderful day all together as a family of 4. Kyla could not be more excited to finally get to be Leah's big sister and she has been doting on Leah nonstop. It is so beautiful and loving to watch the affection that Kyla has been pouring forth onto Leah just over these past few hours.
God has allowed Leah to come home with us, and for that we lift our hands in praise and worship for His answer to our prayers. How wonderful it is to be able to hold her non stop, love and kiss her. Even with all the realities that we've been facing since November, it's funny that it actually keeps slipping my mind that she is so sick. I just feel the joy of holding my sweet daughter. We gave both our girls bathtime together tonight and it was so sweet. Kyla kept pointing out all of Leah's "tiny little parts", and reminding us that SHE is a big girl, who's 3 years old.
Leah's care will require tube feedings every 3 hours around the clock, which take nearly an hour from start to finish. We'll give her 4 different perscriptions, some once, others twice, and another 3 times a day to help with the seizures, blood sugar and thyroid. We feel very up to the challange of learning how to best care for Leah. Please pray that we'd be able to get enough sleep to take care of our two little girls for as long as they both need.
We might not update too often now that we're home, as we're likely to be very busy. However if things should change or we have new prayer requests we will definately post that for all of you.
We are praying for God's peace to just fill our home as we know that Leah's condition is terminal, and we don't know when or under what circumstances she'll go to Heaven. We are asking the Lord to allow those circumstances to be very peaceful, and for many days like today before it's time. We are asking Him for enough time to create a lifetime of memories together with Leah ~ and all of it to be for His glory!

2009-03-29T12:23:00.000-07:00

We are home this evening (Saturday) preparing to bring Leah home tomorrow. Her seizures have increased rapidly, to the point that they are occuring one after another, after another. They have given her the highest dose that is recommeded safely for her body, and yet the seizures keep coming. Last night it caused her to need breathing assistance and we didn't know if she'd still be with us this morning.
Due to the severity of Leah's condition and the obvious distress that she is under, the staff at the NICU gave our family a private room today and allowed everyone, even Kyla to come be together and visit with Leah this morning. I got to hold her practically all day long, and it was simply wonderful! This is what I've been wanting to do for 8 days now, simply be able to hold and love my little baby girl. She's off all monitors now, and we are leaving her life in God's hands yet another night.
Lord willing, Leah will come home by lunchtime tomorrow, and we will be providing the same level of care at home that she's recieving in the NICU. All meds and feedings will continue as long as she can be with us. Watching her decline over the past 2 days so rapidly has brought us to the place of knowing that the NICU has done everything possible to help our sweet Leah, and there is simply nothing additional that they'd be able to offer her there.
We spent a beautiful day together with all of our family, then Luke and I took turns resting with Leah on our chests....she looked the most peaceful and happy that we'd seen her yet. While she slept she didn't have any seizures, and it was so wonderful to feel her heart beating right next to ours! We read her a bedtime story, took turns giving kisses and wound up her musical lamb.
We don't know what this night will hold, or tomorrow for that matter. But God has already written that part of our story, and we need not be afraid of what we will face. Our God is good, and we are praising Him for a wonderful day with Leah! She is His perfect gift to our family!
Thank you for praying, and continuing to support us. We look forward to having Leah at home with us, and being able to love her for the rest of her life!

1 Week Old

2009-03-27T11:16:00.001-07:00

Leah is 1 week old today – by God’s hand alone we can celebrate this milestone. She has the cutest litte hiccups, cries when she leaves Mommy's arms, looks adorable when she stretches and yawn and is simply the easiest baby in the world to love! She passed her hearing screening, so we've been reading books to hear, praying with her and just loving on her as much as possible!
Currently Leah’s condition has been evaluated by our Neonatologist, an Endocrinologist, and a Nurologist, who have categoized her challenges as being in the VERY SEVERE range. They are using the MRI, Brain Waves studies, along with many blood tests, and most importantly Leah’s actual symptoms. Her current symptoms include: No Pituitary Function (lack of ability to produce Thyroid, Corisol, Growth Hormones, and all other basic hormones required for survival. She is unable to regulate her body temperature or blood sugar levels (they have been VERY low). The challenge is that low blood sugar can cause even more seizures, which brings us to another of Leah’s huge challenges. Her brain is not properly formed in the front, a nearly fused single hemisphere, rather than two separate hemispheres which should be connected by three ventricles. Her brain does have a lot of matter, meaning that it is trying to sent electrical messages back and forth but there is not the means to do so. This is causing VERY frequent seizure activity in the brain, however she is being given the two types of anti-seizure medications at the same time to help control these seizures from being manifested in her body. She is still having noticeable seizures, but the neurologist said without the medications, she would be having them very often. It is unknown how well or how long these medications will continue to suppress her body’s seizures. As of now, this is the highest level of treatment for her seizures, and the most that is able to be done to help control them. To treat her low blood sugar levels, the Endocronologist is giving her daily doses of Cortisol replacement therapy. This alone hasn’t helped to stabalize her sugars, so they are starting to put sugar into the milk she is receiving through her feeding tube.
The doctors say they have done all the assessments and tests that they are able to do. They are treating each symptom to the best of their ability. The results of each treatment have not been perfectly successful due to the severity of Leah’s condition.
To come home this next week, Leah needs to stabilize blood sugars so she can come off the IV – we’re trying the Cortisol replacements and adding sugars to her milk to help accomplish this goal.
We would be providing the same level of care at home that she is receiving in the NICU, including feeding her with a feeding tube through her nose, dispensing her daily doses of Cortisol replacements, thyroid replacement and anti seizure medications. (we’ve also been trained to give Leah intramuscular injections in the event that she vomits and cannot receive her meds through the feeding tube).

The doctors have been honest with us that due to the severity of Leah’s condition her expected lifespan is very brief…however they cannot predict if that means days, weeks or possibly longer. Thus our desire to have her home with us where we can hold her while caring for her around the clock becomes so strong. As we’ve now spent a week up at the hospital, most of our 8 hour days have only allowed us to be by Leah’s side for a few hours, and we’ve only been able to hold her for minutes a day. She needs our love in addition to all her treatments, and so we’ve set a VERY tenative date of Tuesday to bring her home. She cannot come home with an IV, so her sugars will need to be better than they’ve been. We’ll get to monitor them every three hours with a diabetes monitor (see there was a reason I got gestational diabetes, as this little blood draw is no big deal to me now), monitor her body temperature every 3 hours, feed her every three hours and Love her every minute.
Your prayers are truly sustaining us during this time. God has been so gracious in answering so many of our prayers and in such specific ways. To Him be the Glory for Leah’s life, and our family’s ability to care for Leah. This road ahead will be possible as our Lord leads us along!

Leah is 4 days old!!

2009-03-24T19:03:00.000-07:00

Our goals for Leah is to see if it will be possible to work towards bringing her home to care for her whatever length of time she can survive. In order to do this, her needs have to drop down to a level of care, that we too can provide at home. So, different from hospice care, our goal is to continue to provide medical interventions from home (hormone therapies, if they help, to replace those missing since it was discovered today that she does not have pituitary function.) This is the "master gland" that controls endrocrine function....however some hormones can be given through her feeding tube that could help her to stabalize enough to come home, but ONLY if her body can respond appropriately to them.) So we meet with the Endocronologist on Thursday to learn how to test her blood sugars, etc. We'll learn to use her NG tube for feedings....it goes through her nose...so we'd have to be able to insert, clean, maintain it. They think that she "should" still be with us for at least the present few days, as nothing seems immediately unstable that they are not able to treat within the NICU through IV, Photo Therapy for Jaunice, etc.
Sorry this update is so brief! It's been an incredibly busy day, and I'm off here at 8pm to go back up to visit Leah. We were unable to hold her today due to her being inside a "box" today receiving the Photo Therapy, as well as an EEG scan of her brain waves that took several hours. But they said I could come back in the evening and possibly get to hold her.
We love her more and more each day! Everything she does is so cute to both Luke and I. Her noises, movements, face, hair, etc. We are definately adoring parents! Kyla got to peek at Leah through the NICU window again, which was very sweet!
Thank you for your continued prayers, that Leah could become stable enough to come home. We understand that her bain malformation is very severe, and that her stabalizing may or may not be possible for Leah. We are waiting to see what God has in store for her life!

2009-03-23T20:15:00.000-07:00

Leah is 3 days old, and such a joy to our family! However, things with her have definitely been up, and then followed by many downs. She’s made progress, only to have new symptoms arise, or to fall back behind on the progress she’s made. She is in need of continuous prayer still, as her life truly hangs in the balance, depending upon what her brain will and won’t be able to do for her tiny body.
Her MRI results came back, and we only have gotten a very preliminary update on her brain. It has been diagnosed as having ALOBAR Holoprosencephaly, which unfortunately is the MOST SEVERE of the different types. Here’s a medical definition for those who are interested:
Alobar (most severe)--where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).
We have not yet gotten any explanation of what our expectations for Leah’s survival should be based upon this diagnosis. From a few internet searches, it seems that we might get a bit more time, and by God’s hand could even surpass that…we’ll just have to wait and see what things her body can handle, and what things just won’t be able to function properly.
Our emotions are truly at both ends of the spectrum right now. We are so saddened to hear the severity of her brain malformation finally diagnosed, yet at the same time truly feeling that this is our "best case scenario still". A scenario that brings us much joy, as we’ve gotten time to love Leah. The reality of getting to care for a baby with very special needs is something we’d found ourselves actually hoping to have the opportunity to do, as we processed everything these past few months. Compared to not having her with us, we’re thrilled to care for her needs, whatever they might be, for as long as God allows.
Our current prayer requests are that we could bring her home soon, and have the chance to love her around the clock. As trying to make it up to the NICU has already proven to be a very hard task for a mom recovering from delivery, and a dad who’s trying to make sure that mom gets some rest in between a vigorous breast pumping schedule. However, compared to our expectations, the joy of being able to feed our daughter is worth the slightest inconvenience. Kyla is the most anxious to have Leah come home so she can get more than a mere glance at her new baby sister.
Leah’s body temps have been hard for her to regulate once again, and her blood sugars are not staying high enough without help from her IV, which was removed this morning. She's also been having more seizures even with the anti-seizure medication. All of these things would prevent her from coming home any time soon.

We are also in need of much rest, both physically and emotionally.
Thank you all for your continued prayers and support. I know I won’t ever be able to write the "Thank You Cards" for all the flowers, gifts, meals and financial assistance at Leah’s WaMu Benevolence account. Which is hard for me, since I’ve always been the Thank You Card queen, with a record turn around time of 1 day upon receiving a gift. It’s always been that way, since I feel so appreciative whenever someone is generous.
We are looking to the Lord to continue to provide abundant blessings to our family. We truly feel that Leah’s life is the biggest blessing yet, along with the bittersweet reality that she is one very sick little girl.
We are overwhelmed with the love from all of you, who have yet to be able to meet her or hold her yet. But your love is so present and obvious from your messages and postings. We’ve read each and every one and are so encouraged by how our little Leah is impacting your life in a positive way!

2009-03-22T21:03:00.000-07:00

Sunday, March 22, 2009 9:03 PM, CDT
We are praising God for the gift of Leah’s life, and having already been blessed with 2 FULL DAYS together! We have spent this time getting to know her better and better, and love her deeper and deeper. We are getting to live out our "BEST CASE SCENARIO", in terms of God answering so specifically our many, many prayers.
So here is a brief medical update for everyone, as of where she stands as of Sunday evening. She is breathing COMPLETELY on her own! She hasn’t had a seizure since beginning Saturday on a daily dose of a very common anti-seizure medication. This medication does make her extra sleepy, but we’ve been able to attempt nursing due to the fact that her cleft is only on her lip and gumline – NOT her palate. Currently she is being fed both through IV liquids as well as through a feeding tube that goes in her mouth and puts it directly into her tummy. Luke and I have gotten to take part in several of these feedings. She now can maintain her own body temperature without a heat lamp, as she is just using warm clothes and blankets wrapping her up like a little burrito. 
In terms of tests and assessments, the first ultrasound scan of her brain was performed Thursday evening. The images were not good enough for the radiologist to make any interpretation from, so she will have an MRI done in the next 24 hours. This is the clearest way to assess her exact brain malformation and get a prognosis for legnth of her survival. Currently, our neonatologist does not agree with our prenatal diagnosis of Trisomy 13. He says that from the neck down he sees nothing that he feels points to a chromosonal disorder. He will send off for a very comprehensive test to determine exactly what her condition is, however it could take up to 2 weeks to get any results.
Her brain malformation is called Holoprosencephaly. (we knew this from the prenatal ultrasound, and this often occurs in babies with Trisomy 13 - 60% of them in fact, hence our prenatal diagnosis). This condtion of Holoprosencephaly alone…is very rare…only 2 babies in Oregon are born each year with it. This condition can range from mild to very severe. It is only with the MRI along with Leah’s progress that they will be able to determine how severely she may be affected….and how long they’d predict she could survive.
Leah’s progress - the doctors are saying that they are working with her being able to come home in the coming weeks. 3 main things must occur…and thus become our prayer focus.
1. She must be able to breath on her own. (the seizures were causing her vitals to drop)
2. She must be able to be fed and no longer require an IV with fluids. (currently she is half on formula, half on IV fluids, and they are working on weening her off the IV. Her blood sugars were VERY low, so they introduced fluids with the IV to help them stabalize)
3. She must be able to maintain her body temperature.
We’d LOVE to bring her home to spend as much time with her as possible. Our reality is that Leah will be able to do, only what Leah is able to do. We cannot expect any more, any less. She won’t have to follow or fit any textbook defination of any condition. God will allow her to have the life that He has planned for her. We are just blessed to be her parents and to get the opportunity to love and care for her while she is with us!
We would not be sitting here able to hold our daughter, listen to her cries, kiss her cheeks if it were not for all of the millions of prayers that have been offered up on her behalf! We are certain that God has heard our prayers…..the continuous intercessions for the life of our precious Leah! With the expectation that we would not necessarily get to meet her alive, and now we have been changing her diapers, practicing nursing, holding and rocking her for 2 days….we are so greatful to the Lord! There is relief from the months of grief, and joy over the memories our family has been able to create with Leah. God is holding us all through this, as we take Leah’s life one moment at a time…..and as we are creating new memories with each moment together!
We are now home and will plan on spending as much time as possible up at the NICU learning how to care for Leah. We’ll be very busy and hard to get ahold of, and we’re not sure if we’ll be able to have visitors with all the instructional time we’ll be having (PT/OT, Feeding support, Assessments, meetings with various doctors).
We are praising God for giving us time with our precious daughter, Leah!

2009-03-20T18:23:00.000-07:00

Leah Grace has arrived!!! She weighs 5lbs 11 oz and measures 18 inches long. She's breathing on her own and is housed in the NICU she she can get a little extra oxygen. Kristine and Luke are spending time holding her and loving her. They will post more very soon. Thank you for your continued prayers.

2009-03-19T20:00:00.000-07:00

The time has finally come. We checked into St. Vincent's at about 6:00 PM on Thursday. After our appointment, the doctor was concerned about low fluid around the baby and higher blood preassure in Kristine. We decided with the doctor that it would be best to induce right away. Please be praying for us and check back in a few days for more updates.

Luke

37 Week Appointment

2009-03-12T14:38:00.000-07:00

Leah seems to be doing well according to Wednesday's appointment. She received great scores on her ultrasound test called a Biophysical Profile. It checked her heartrate, breathing movement, body movement, muscle tone, and amniotic fluid levels. Even with her growth dropping off, she is currently not in "distress". Our doctor feels confident that with such positive ultrasound results, she should still be with us at next week's appointment. They didn't measure her, so we don't have any updates on her size. The next measurements will be taken at 39 weeks (spring break).
We felt so supported and encouraged by a prayer time we held on Monday. Many of our friends came together to intercede on Leah's behalf, and we know many more lifted our family up in prayer from your homes. Our network of support, including YOU....is one of our greatest gifts from the Lord. We began realizing this 5 years ago when our wedding guest list topped 500 people. God has surrounded our family with people who care, and will walk besides us through life's journey.
At my weekly bible study this week, Beth Moore wrote the following lines:
"Those who are faithful in the midst of immense suffering somehow allowed their fiery trials to purify rather than destroy them. If we've never suffered like some of the saints we kno or have read about, we tend to indict ourselves with failure before our trials ever come. We must remember that God grants us grace and mercy according to our need. No, I don't have the strength or character to be faithful under such heartshattering conditions, but the Holy Spirit will impart a power and grace I've never experienced when my time comes. The challenge is whether or not to accept them."
This speaks so clearly to my heart right now, since within 18 days....Leah will arrive! And I am absolutely positive that I am NOT strong enough to face our reality, which is how sick our daughter is, and the fact that the doctors are telling us she will die, they just cannot predict when. My confidence in the Lord allows me to pray, EXPECTING Him to impart the power and grace that I'll need. These past 5 months have definately already felt like a period of testing/trial. According to 1 Peter, it is this testing that shows us the depth of our own faith. God inherently knows where each one of us is spiritually. However, it is through trials, that He reveals His faithfulness and our ability to trust Him, to ourselves.
"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls." 1 Peter 1:6-9
********************************************
Prayer Requests (very similar to last weeks)
* For Leah to survive birth, and to be able to breathe on her own, so that Mom and Dad can hold her immediately upon her arrival
* For Leah's healing, and strength to beat the medical statistics for her condition (50% chance of living a week, 10% chance of living a year).
* For Leah to stabalize enough to be able to come home.
* For our family to experience God's comfort, peace and joy in the coming days, upon Leah's arrival, and beyond

 Thursday, March 19, 2009 7:23 PM, CDT
The time has finally come. We checked into St. Vincent's at about 6:00 PM on Thursday. After our appointment, the doctor was concerned about low fluid around the baby and higher blood preassure in Kristine. We decided with the doctor that it would be best to induce right away. Please be praying for us and check back in a few days for more updates. Luke

Friday, March 20, 2009 6:23 PM, CDT
Leah Grace has arrived!!! She weighs 5lbs 11 oz and measures 18 inches long. She's breathing on her own and is housed in the NICU she she can get a little extra oxygen. Kristine and Luke are spending time holding her and loving her. They will post more very soon. Thank you for your continued prayers.

Sunday, March 22, 2009 9:03 PM, CDT
We are praising God for the gift of Leah’s life, and having already been blessed with 2 FULL DAYS together! We have spent this time getting to know her better and better, and love her deeper and deeper. We are getting to live out our "BEST CASE SCENARIO", in terms of God answering so specifically our many, many prayers.
So here is a brief medical update for everyone, as of where she stands as of Sunday evening. She is breathing COMPLETELY on her own! She hasn’t had a seizure since beginning Saturday on a daily dose of a very common anti-seizure medication. This medication does make her extra sleepy, but we’ve been able to attempt nursing due to the fact that her cleft is only on her lip and gumline – NOT her palate. Currently she is being fed both through IV liquids as well as through a feeding tube that goes in her mouth and puts it directly into her tummy. Luke and I have gotten to take part in several of these feedings. She now can maintain her own body temperature without a heat lamp, as she is just using warm clothes and blankets wrapping her up like a little burrito. 
In terms of tests and assessments, the first ultrasound scan of her brain was performed Thursday evening. The images were not good enough for the radiologist to make any interpretation from, so she will have an MRI done in the next 24 hours. This is the clearest way to assess her exact brain malformation and get a prognosis for legnth of her survival. Currently, our neonatologist does not agree with our prenatal diagnosis of Trisomy 13. He says that from the neck down he sees nothing that he feels points to a chromosonal disorder. He will send off for a very comprehensive test to determine exactly what her condition is, however it could take up to 2 weeks to get any results.
Her brain malformation is called Holoprosencephaly. (we knew this from the prenatal ultrasound, and this often occurs in babies with Trisomy 13 - 60% of them in fact, hence our prenatal diagnosis). This condtion of Holoprosencephaly alone…is very rare…only 2 babies in Oregon are born each year with it. This condition can range from mild to very severe. It is only with the MRI along with Leah’s progress that they will be able to determine how severely she may be affected….and how long they’d predict she could survive.
Leah’s progress - the doctors are saying that they are working with her being able to come home in the coming weeks. 3 main things must occur…and thus become our prayer focus.
1. She must be able to breath on her own. (the seizures were causing her vitals to drop)
2. She must be able to be fed and no longer require an IV with fluids. (currently she is half on formula, half on IV fluids, and they are working on weening her off the IV. Her blood sugars were VERY low, so they introduced fluids with the IV to help them stabalize)
3. She must be able to maintain her body temperature.
We’d LOVE to bring her home to spend as much time with her as possible. Our reality is that Leah will be able to do, only what Leah is able to do. We cannot expect any more, any less. She won’t have to follow or fit any textbook defination of any condition. God will allow her to have the life that He has planned for her. We are just blessed to be her parents and to get the opportunity to love and care for her while she is with us!
We would not be sitting here able to hold our daughter, listen to her cries, kiss her cheeks if it were not for all of the millions of prayers that have been offered up on her behalf! We are certain that God has heard our prayers…..the continuous intercessions for the life of our precious Leah! With the expectation that we would not necessarily get to meet her alive, and now we have been changing her diapers, practicing nursing, holding and rocking her for 2 days….we are so greatful to the Lord! There is relief from the months of grief, and joy over the memories our family has been able to create with Leah. God is holding us all through this, as we take Leah’s life one moment at a time…..and as we are creating new memories with each moment together!
We are now home and will plan on spending as much time as possible up at the NICU learning how to care for Leah. We’ll be very busy and hard to get ahold of, and we’re not sure if we’ll be able to have visitors with all the instructional time we’ll be having (PT/OT, Feeding support, Assessments, meetings with various doctors).
We are praising God for giving us time with our precious daughter, Leah!

Monday, March 23, 2009 8:15 PM, CDT
Leah is 3 days old, and such a joy to our family! However, things with her have definitely been up, and then followed by many downs. She’s made progress, only to have new symptoms arise, or to fall back behind on the progress she’s made. She is in need of continuous prayer still, as her life truly hangs in the balance, depending upon what her brain will and won’t be able to do for her tiny body.
Her MRI results came back, and we only have gotten a very preliminary update on her brain. It has been diagnosed as having ALOBAR Holoprosencephaly, which unfortunately is the MOST SEVERE of the different types. Here’s a medical definition for those who are interested:
Alobar (most severe)--where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).
We have not yet gotten any explanation of what our expectations for Leah’s survival should be based upon this diagnosis. From a few internet searches, it seems that we might get a bit more time, and by God’s hand could even surpass that…we’ll just have to wait and see what things her body can handle, and what things just won’t be able to function properly.
Our emotions are truly at both ends of the spectrum right now. We are so saddened to hear the severity of her brain malformation finally diagnosed, yet at the same time truly feeling that this is our "best case scenario still". A scenario that brings us much joy, as we’ve gotten time to love Leah. The reality of getting to care for a baby with very special needs is something we’d found ourselves actually hoping to have the opportunity to do, as we processed everything these past few months. Compared to not having her with us, we’re thrilled to care for her needs, whatever they might be, for as long as God allows.
Our current prayer requests are that we could bring her home soon, and have the chance to love her around the clock. As trying to make it up to the NICU has already proven to be a very hard task for a mom recovering from delivery, and a dad who’s trying to make sure that mom gets some rest in between a vigorous breast pumping schedule. However, compared to our expectations, the joy of being able to feed our daughter is worth the slightest inconvenience. Kyla is the most anxious to have Leah come home so she can get more than a mere glance at her new baby sister.
Leah’s body temps have been hard for her to regulate once again, and her blood sugars are not staying high enough without help from her IV, which was removed this morning. She's also been having more seizures even with the anti-seizure medication. All of these things would prevent her from coming home any time soon.
We are also in need of much rest, both physically and emotionally.
Thank you all for your continued prayers and support. I know I won’t ever be able to write the "Thank You Cards" for all the flowers, gifts, meals and financial assistance at Leah’s WaMu Benevolence account. Which is hard for me, since I’ve always been the Thank You Card queen, with a record turn around time of 1 day upon receiving a gift. It’s always been that way, since I feel so appreciative whenever someone is generous.
We are looking to the Lord to continue to provide abundant blessings to our family. We truly feel that Leah’s life is the biggest blessing yet, along with the bittersweet reality that she is one very sick little girl.
We are overwhelmed with the love from all of you, who have yet to be able to meet her or hold her yet. But your love is so present and obvious from your messages and postings. We’ve read each and every one and are so encouraged by how our little Leah is impacting your life in a positive way!

36 Week Appointment

2009-03-06T14:53:00.000-08:00

Heart Rate: 138 bpm Weight: 4lbs. 13oz.
Yesterday's ultrasound revealed that Leah is still growing, but at a much slower rate this past month. Previously she was measuring at the 25% and currently that had declined greatly to just under the 10%. Our Perinatologist said that this growth decline is expected with trisomy 13 babies, and that it typically occurs much earlier.....thus many babies simply stop growing before birth and pass away in utero. However, the fact that Leah's been able to grow longer than most, and we will have reached "Full Term - 37 weeks" on Monday.....we still are looking at a possibility of heading into a live delivery. But on the flipside, there is a chance that her growth will just continue to decline in the coming days, which could cause her to pass away before we deliver. We will have another ultrasound next Wednesday, where her heartrate and other vitals will be monitored more closely to help assess how she is doing. In the event of observable distress, it may be possible to induce labor early. This would be done, with the hopes of meeting her before she goes to Heaven.
So, news of her growth slowing down brings much saddness, even though it's exactly what the doctor's told us to expect back in November. We are so thankful for carrying Leah these past 36 weeks. She has given us the gift of kicks, flips, rolls and hiccups to us in such amazing abundance....far more than we ever could have asked for. When a friend shared back in November that she was praying for "many strong kicks", I never could have imagined the importance of such a prayer. God has been so gracious in allowing me to feel Leah move EVERY SINGLE DAY since our diagnosis, and her movements have begun before I even get out of bed in the morning. I've been able to start each of the past 114 days knowing that Leah was still with us....and able to praise God for the gift of one more day!
We also had a "Team Meeting", which included our Perinatologist, a Neonatologist, and a Nurse from our hospital who will help make sure our wishes for Leah's arrival are carried out. We learned a great deal from the Neonatologist, that will be helpful should Leah survive birth and require breathing and other assistance. We learned that for the majority of Trisomy 13 babies who survive birth, and beyond for minutes, hours or even days, it is quite often with medical assistance within the NICU. Understanding the role the NICU may play in our time with Leah was honestly hard for me to hear, as it required greatly adjusting my prior expectations of our possible time together as a family. Also knowing that I could not immediately hold Leah, should she require NICU care is much harder to grasp than I'd expected. Since she isn't expected to survive very long, my desire to hold her while she is alive is the strongest longing I've ever experienced! God knows I want to get this chance....and how badly I want to have the opportunity to express my love to her...face to face.
In light of our appointments yesterday, we have the following list of prayer requets:
* God's comfort and peace upon our family as we are experiencing the increased intensity of emotions as Leah's arrival draws near.
* Strength for Leah to survive delivery and be able to breathe on her own.
* The opportunity for us to hold Leah while she's alive.
* That God would make all the Life/Death type decisions in His sovereignity. (These are not the types of decisions ANY parent should have to make!!!)
I find comfort in scripture....for in Roman's 8:16 it says, " I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. The creation waits in eager expectation for the sons of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God.
We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. "
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I've often had dreams (nightmeres) about tidal waves. Even though I don't live near the coast, I guess it's always been one of my greatest fears. Lately, the analogy of my dream and our current situation keep coming to mind.
I feel like our family is standing on an island. We've been told that a deadly tsunami is headed directly towards our island. With all the modern technology, it is known how strong this storm is and the damage it will cause. It is also known that the tsunami safe zone where wer'e are all gathered and waiting, simply isn't high enough to protect us. Weather models are predicting that the tidal waves will be so large that they will completely cover even this highest location on the island.
We know what we are bracing for, and we can do nothing to change our circumstances. But we do know that God is with us. "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? In neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. " - Romans 8:35, 38-39

Keeping Memories of Leah Alive -

I have decided to pick out some special things that correspond with my senses, to help make Leah’s life more tangible and leave me with these keepsakes as a way of remembering and celebrating her life. I wanted to share some of them with you:
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Leah's:
Color: Lavender
Animal: Lamb
Nickname: God's Little Princess
Flower: Daisy
Song: Jesus Loves Me
Book: The Little Lamb by Judy Dunn
Scent: Sweet Pea (from Bath & Body Works)

34 Week Appointment

2009-02-19T14:54:00.000-08:00

(heartrate-152 bpm)

I had another OB appointment this morning, and the doctor seems "cautiously optimistic" that Leah fits the profile of babies that could potentially survive birth and beyond for a bit longer than merely minutes. Of course, babies in her profile don't ALWAYS live, but she could possibly be one of the ones who do. It just depends on so many factors that no doctor could yet know. At least he's being positive and hopeful rather than stricly medically realistic, and pessamistic, I guess. :)
At today's appointment, he revised his guess to being like 50%-75% sure Leah does have Trisomy 13, rather than the less severe diagnosis of purly genetic causes for her issues.
Our doctor also fully supports our plans to use medical intervention to address any/all of Leah's symptoms upon her arrival, until a point where it's clear that it's just not going to keep working. I think that compared to doing nothing (comfort care), there would be a lot less guilt/regret as a parent, knowing you did everything possible to try and help your baby make it....instead of being left to wonder...."If only we'd tried...."

We had a tour of St. Vincent Hospital's maternity ward on Sunday, which made our due date feel all to close, and Leah's condition all too real. I've hardly let myself think about the whole Labor/delivery part. It will be so different from last time, with all the added anxiety and uncertainty attached.
It's definately a plus for a trisomy baby to have a short and fast labor, so their body doesn't have to endure the stress from the contractions too long. We have decided to request a C-section if Leah is in distress during labor. The standard procedure for a baby with a trisomy diagnosis seems to be not to pursue/allow a c-section, since the baby isn't exptected to live very long. They consider it an undue risk to mom to go through labor. Many trisomy babies may not even be monitored at all during their delivery for this same reason.
Part of our decision against having amniocentesis done, is that without a complete diagnosis, we have more options available to us in terms of helping Leah fight for her life. Since the doctors are not positive as to Leah's condition, they will more easiely honor our wishes for medical intervention, rather than encouraging us to pursue "comfort care only" upon her arrival. Once she arrives, a simple blood test, taking 48 hours for results, will be able to tell of if she has Trisomy 13, and which form of it as well.
In response to my question regarding most common cause of death in Trisomy babies, my doctor shared today that it's usually one of two things. First, that these babies are very prone to sleep apnea, and with the wrong blueprints in each cell of their bodies....they simply don't get the message from their brain to breath. And secondly, with cleft lip/palate, there isn't division between the mouth, nasal and ear cavities. In addition to feeding probably, this means fluid can easily get down into the baby's lungs, develop into pnemonia, which their weak body cannot survive.

Having appointments like today, where our doctor says Leah could live even a few days puts such a glimmer of hope back into my painfully responsible plans of "trying to be prepared for the inevitable". Calling funeral homes the same week as filling out my hospital delivery room pre-registration forms is beyond hard! We're preparing to say both Hello and Good-Bye at the same time. The usual plans of decorating a nursery have been replaced by plans full of so much sorrow and grief.
However, simply knowing that God chose me to be Leah's mother brings me so much joy. He chose me to carry this very special child of God.....and carry her I will. Full of love and prayer, able to fully dedicate her life to the Lord. I definately praise the One, who's chosen me to carry Leah! It's such a short while, but also such a long road at the same time. The emotions that go along with such a task are deeper and more intense than I've every before experienced. I just bounce back and forth between trying to prepare for the reality that she might pass away during delivery, to the possibility of her living several weeks/months (which would be a miracle). Of course my desire is for more time! My most hearfelt cry to the Lord is simply for "More Time Lord." It would definately be better, in terms of feeling like I got at least some time to express my immense love face to face with Leah. Also, I pray that Luke and Kyla would get the opportunity to bond and form memories with Leah.
But how long we get with Leah is entirely out of our hands....and fully in the Lord's. It has been giving me such a deeper sense of the reality of how to live moment by moment...as well as how to give our worries and fears over to the Lord. Since I know that I really can't carry them myself, it is easier for me to not even attempt to try. He will be with us each step of the way. He will either bring healing to Leah's tiny earthly body, or she will be eternally healed as her soul, perfectly strong and healthy, enters Heaven. I also have such a deep confidence that He will bring joy, comfort and healing to our family in the event of her loss.

Here are some specific prayer requests:
** Healing for Leah's Body** and also....
1. Leah would continue growing and I would feel the reassurance of her kicks and movements daily
2. Leah would be strong enough to survive delivery (no c-section needed) and even get to come home
3.Wisdom as we meet March 5th with a Neonatologist (the doctor who'll care for Leah after delivery). She'll help us understand and become more familar with the medical terms and practices that may be necessary upon Leah's arrival
4. That Leah could natually arrive a week early, during Spring Break, as my Mom and Sister are both teachers off school and this would allow them the extra time to spend with Leah. Also, Luke's sister Callie and her hubby are planning to come down from Spokane then, and Luke's other sister Charissa has plans to leave for spring term in Hawaii on April 7th. We'd sure love to be able to have all our family be a part of Leah's arrival and celebrations of her life.
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I feel like I am trying to make plans not having any idea of which exact scenario I am truly even planning for. It's like I'm on an airplane, and I'm told I'll be moving to a foreign county permanetly, but I won't discover the location until we land. I cannot prepare as I would like by learning the language, researching the customs, food or climate. I've brought my suitcase along, but without knowing where I'm going, I was forced to bring it empty. I simply did not know what to pack! I have to trust God to provide everything I'll need!
I know that God will continue to be with us each step of our journey with Leah. Nothing is uncharted territory for my God! He knows and will supply all that I need!

Introducing Leah Grace Jarmer

2009-02-19T13:30:00.000-08:00

We finally had another appointment back at the Perinatal Clinic on Thursday. Even with everything being the "same" as before, we felt like it was a very positive appointment. Leah is still growing - she's at the 25% in terms of size. She is now 32 weeks along (8 months) and is estimated to weigh around 3lbs. 8 oz. Her heart is still beating strong - 138 bpm, and it is so amazing to be able to see her actual heart on the ultrasound and watch it beating!
When we asked the Perinatologist to go back over with us a list of Leah's ultrasound markers that indicated Trisomy 13 - he mentioned the following things:
1. Cleft Lip/Palate
2. Brain Malformation (possibly Holoprocencephaly - he sees that the Corpus Collosum is not fully formed, and there is a gap present that is filled with fluid)
3. Leah's eyes are slightly closer together
4. Leah's feet are misshapen (often called Rocker Bottom Feet)
When these things appear together it points strongly to a chromosonal disorder - Trisomy 13 in particular. However, without having an absolute test result from amniocentesis, our doctor says it's still possible these markers are not due to Trisomy 13, but rather other causes. He shared that in his opinion it wasn't necessary to have amnio done, since we can test Leah's blood once she arrives to determine her exact condition.
Our doctor also said, that since Leah is still growing, and VERY active at 8 months - she's already beaten a good number of the odds for babies with Trisomy 13. In light of that, he is slighly less sure that it is Trisomy 13, he said maybe a 50% chance at this point. Irregardless of the diagnosis, her brain malformation is severe, and it is hard for him to predict the length of time she may be able to survive in light of it.
It is a good sign that Leah's already turned and is positioned head down for our upcoming delivery. It is still very possible that Leah will go to Heaven prior to her birth, but we are praying that God would give her the strength to survive birth so we can meet her and love her (even for just a short time).