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!