Tuesday, February 11, 2014

•Day 3 of Our Stay!•

We got to meet with Dr. Vaskochil this morning. He is in the genetics department of things. His team has narrowed Peyton's diagnosis to a genetics problems. He was born with three things that are making the dr veer towards this directions. They are a larger than normal tongue, small for gestational age & hyperglycemia (high glucose). The chromosome they are looking into is chromosome 6. They are thinking Peyton got double of that chromosome from Trevor & none of the chromosome from me. Which could cause his numbers to rise. This is called Uniparental Trisomy Chromosome 6. He more than likely will also have the neonatal diabetes, for how long we don't know.

He did get a tube put in through his nose that goes down to his stomach to help with eating. It's not a constant feeding tube. One of our main goals for him is to eat on his own so they try to feed him through his mouth & if or when he falls asleep from lack of energy they put a syringe at the end of the tube & let gravity take it's course & the food will drip down to his stomach. Sunday night he also had a severe spike in his glucose, 345. So he received a quarter of a unit of insulin. It doesn't seem like much but for him it was enough to bring it down to 115. Then the day got bad, the numbers dropped to 34 then back up to 50 back down to the 30's again but as of 9 p.m. Last night they were finally in the normal range & we got a 97!!! He still mostly sits under the warmer. He is just so fragile he gets cold super easy. Moving him a lot also burns all the calories he has, which is not many. The dr said he has seen this in babies but never been on a diagnosing team for it, 1 in 500,000 babies will get this problem. We had blood work to test our chromosomes which will go to the Mayo Clinic & Peytons lab work will go to the U.K. To be tested. They have the best lab to test on baby glucose problems. 

It is absolutely insane to me that this is still happening. We were not prepared for any of this. Expectations were set for an 8 pound baby. The hardest part for me is knowing that my other kids are home without me. This is the longest I have EVER been away from Wyatt. Carter is such a good helper & I'm sure is helping grandma with him. Today is Wyatts birthday, not that he knows or cares, but it honestly breaks my heart to not spend it with him & bake his cake & watch him open presents. I know it won't matter if we celebrate a week after but it just naws at the back of my thoughts. I know my kids are in great hands but I miss them. Sometimes life is just not fair! 

I will update if anything has happened overnight when we get to the hospital in just a little bit! 

Continue to pray for Little P!!!


  1. Aww Ky! Hang in there! I would have a really hard time being away from my kiddos too! :/ you guys will be stronger through it all. :)

  2. Oh my heart just aches for you. I'm sorry that you are going through this, but you are one strong mama. It will all work out. If you need anything I'm here, even just to talk. You're in our prayers. Love ya.

  3. I'm one of the nurses at CMH - not sure if you even remember me...and I have just been thinking of Peyton and praying for good news for you guys. It sounds like he is in good hands. My heart just aches - I cant imagine going through this. You guys are wonderful parents-try to stay strong.

  4. Jenny! Thank you so much! You are so sweet. He is doing as well as expected. Please keep everyone else updated that wants to know about him as well.

  5. I am sorry Kylie, prayers for you and your little family. It's so hard to be away from your other babies. Hugs

  6. Lots of love and prayers for you and Trev!!!