Sunday, May 16, 2010

Day 5







Day 5...another stable day, which is all we are asking at this point! This morning we called down to the hospital to see how Kale's night went. The nurses said that the little squirt yanked his IV out last night! What a little booger, we know that we will have our hands full when he finally comes home :) So, they replaced his IV and took the saran wrap tent off. He squirms around way too much to be under that, he keeps getting tangled up in it. We went to visit him today and Derc got to do some 'Positive Touch' with him. That basically means that he reaches into the incubator and 'cups' his body, putting his hands around his feet and over his stomach. Kale definitely responds to it, but sometimes a little too much. His oxygen levels dipped quite a bit when Derc was touching him because it's so much stimulus on his little body. He did it for about 5 minutes or so then we let him rest. His blood sugar levels are still within normal without being on insulin, so that is a positive thing. He has remained off his dopamine (Blood pressure medicine) another day as well. They are flipping him over again tonight to his stomach, they will begin doing that more frequently. He lost a little more weight last night, he is at 1 lb. 6 oz. now. Tonight they are planning on giving him about 1 ml of breast milk through his feeding tube to see if his stomach can tolerate it. It is a slow process for him but we'll see if he likes it!
Tomorrow is the biggest day of our little guy's life. He has his brain scan around 7am...that will show if there has been any bleeding in his brain so far. His capillaries are so fragile and he has been through so much stress that there is a risk for brain bleeding. There are four different levels, stages 1-4, and we would love to see ZERO. They said that often times if we get a stage 1-2 those can resolve on their own before they leave the NICU, stages 3-4 are more severe. Also, he will have another scan again around 32 weeks, and the stages can change if bleeding either occurs or slows. Anyhow....that is the biggie tomorrow, so if our little one has been in your prayers, we would love if you could pray for a clear brain scan!!!
Kale's aunt Sarah spent the night with us last night, and she spent some time scrapbooking! Kale has a very creative aunt so she made some cute stuff for his door. Check out the pics above....we have a little 'ticker' that counts how many days old he is :) We stole the idea off of a door down the hall...the little girl's sign said she had been there for 50 days and was born at 1 lbs 6 oz and is now at 2 lbs 6 oz. She has some pictures up so we have a good idea of what gaining a pound will do for Kale.
Today the docs took off his mask so we could take a look at his face, those are posted above :) We think he's pretty cute and once he gains a few pounds we'll be able to see who he looks like more. We're taking bets on what features will look like which parent....everyone says he looks like Derc so far...I'm thinking he has my massive hands :)
As for me, I'm healing up well, I have lots of help around the house between Derc and my mom staying with me, along with many other offers for help from friends and family. I should get results back from my tests tomorrow on if there is anything going on inside me that may have caused Kale's heart block. At this point it's tough to think about anything except his brain scan, so I haven't had much time to think about that.
As always, thank you for your thoughts and prayers, he has so much positive energy coming his way from all of his friends and family, and so many others that we have never met or don't know and have heard his story. The support is completely overwhelming and we continue to hear new stories each day about someone who knows someone else that has gone through something similar. We love hearing stories of hope, it helps tremendously.

Well...until tomorrow. Cross your fingers for a clear brain scan!

6 comments:

  1. Steph,
    My mom let me know what's been going on with you and your little one when I talked to her last week and passed along the link to your blog. I wanted to let you know that I'm thinking of you as you embark on this journey and sending you as much positive energy as I can from North Carolina!

    I hope everything goes well from here on out and you are able to enjoy the newest addition to your family!

    Katie (Glass) Bonasera

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  2. I'm glad you guys have had positive news every day. I'm hoping for the same tomorrow! Stay strong and optimistic. I've seen more miracles and touching stories at the Children's Hospital than I can even remember. I hope to add you guys to that list! Best to you and your little guy :-)

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  3. Keep the positive news coming! We'll be praying for a zero on the brain scan!

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  4. Stephanie,

    This is coming to you from MD, where I (your first cousin Carol, twice removed: your Mom June is my first cousin, once removed, as Uncle Ralph, your great Grandfather, was my Dad Loyd's brother), my husband Andrew, and our daughter Grace (16) are all praying for your family! Thanks for the pictures, and the updates. You may know that I direct a therapeutic riding program, Equine Therapy Associates, a Premier Center of North American Riding for the Handicapped (www.equinetherapyassociates.com) So very many of our clients, old, young, senior, those damaged at or before birth, those injured in motorcycle or car accidents, injured by stroke, or just worn-out, can be brought along towards meaningful lives, with God's help. We all pray that Kale lives and is not damaged mentally and or physically. If that is not the Lord's plan, then know that there are wonderful options for rehabilitation out there once he turns two (with a hippotherapy trained OT, PT and or speech pathologist) in a NARHA Premier Center (www.narha.org), or in a regular NARHA Premier Center such as ours, when he turned four. Until then, or if, you have our prayers! Carol, Andrew and Grace

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  5. You are amazingly strong and we so appreciate your blog to keep us informed. We pray that God's strength makes each day easier and that our dear Kale will growing stronger everyday. We send you truck loads of love and prayers, Barbara, Mark, and Hagen

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  6. Stephanie and Derc,
    You are both going to be amazing parents. You have a little fighter that showing you how life is truely special. Sending good thoughts your way with hopefully good news about the test today.Keeping you in my thoughts. Haley has been asking for Kale updates too. Love, Laurie, Pat and Haley

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