Remembering When it was the FOUR of us

Half A Year

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

Just The 3 of Us This Christmas

Christmas Gifts

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

This video is from when Leah was 3 weeks old.

A Year of Tears

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

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

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

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

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

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!

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

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

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

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

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!

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

/tres/images/photos/1/1/1/0/111022/l.HgxodActciVkwMRC.jpg/tres/images/photos/1/1/1/0/111022/l.HgxodActciVkwMRC.jpg
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

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

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

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.

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

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!

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

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!!

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!

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!

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!