Our miracle baby is three months old! I am so grateful for everyday that we have with him. I don't want to ever take these days for granted ever again, with Davis or Hudson. Each day we have with both boys is a treasured gift. Tucker and I are so thankful God chose us to be these amazing boys' parents. We just want to soak up every hour, every minute, and every second. Soon they will be big boys, and we will miss these crazy, full, and tiresome baby and toddler days.
The day Davis turned three months old, he weighed 12 pounds and 8 ounces. He weighs about a pound more than that now. They take his weight daily to make sure he's following a growth curve. In order to get him to gain more weight, they were adding micro-lipids to his formula. He was getting 95mLs, which is a little over three ounces per feeding. The mirco-lipids increased the calorie count per ounce to 32. He started to gain too much weight, about 60 grams per day, so they reduced the calorie count to 30. He was still gaining too much weight, so they stopped adding the micro-lipids all together. They increased his feeds to 100 mLs at a regular calorie count of 27 calories per ounce. He's now gaining the appropriate amount of weight, about 20 grams daily. Davis is growing so fast! He is now wearing size 6 months clothes and size two diapers.
Unfortunately, Davis is still being fed by a tube that runs to his stomach. He's had two swallow studies, and he failed them both. The first time, he failed right away. He had the second swallow study two weeks after the first one, and while he had definitely gotten stronger, he still aspirated after 8-9 swallows. He gets tired quickly, and when he becomes tired, it's hard for him to coordinate sucking, swallowing, and breathing all at the same time. We are allowed to dip his pacifier in formula at the start of a feed, so he still associates the taste of formula and the action of sucking with feeling full. His speech therapist said they probably won't do another swallow study until after transplant.
They have also started giving Davis his two month vaccines. He will get a monthly shot of an antibody that prevents RSV. He had his first round last week. He also received his DTAP vaccine last week, and I know he's scheduled to get another vaccine this week. Being at the hospital means there is a greater risk he could get sick. Hopefully, getting his vaccines will help prevent him from getting sick before and after transplant.
Last week, we were told that the average wait time is three months. Davis has been active on the list a little over two months now. We are hoping that Davis will get the gift of life he so desperately needs, soon. However, we are trusting in God's plan and in His perfect timing. We know he has it all planned out. Sometimes I wish he would let me in on his plan, but that's not how it works. In the book of Isaiah chapter 55 verses 8-9 it says "For my thoughts are not your thoughts, neither are your ways my ways. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." I also believe that God is on my side, fighting for our family. Romans 8:28 tells us "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." This means that in this season of darkness, there will be light. God is doing something BIG here, we just need to trust Him and have faith. The Bible tells us "Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1. Now is the time to persevere in this wait, and watch what God does in and through Davis. He is evidence of a mighty God!
The nurses at Children's are amazing!
One of his sweet nurses made this for Davis on his three month birthday.
Please continue to be in prayer for Davis and for us. We had to come up with a new schedule, so Hudson could be home more. This means that Tucker and I don't get to see each other very much, and it only gives us one night a week to be together as a family. It's hard on Tucker and I, but we feel we are making the best decision for both our boys. We also know that this is not forever; it's just one chapter in our book. We believe it won't be too much longer till we are all together again!
Continue to be in prayer for the donor family, as well. We always want them to be included in our prayers. Their tough decision and loss will be our greatest blessing. We will be forever grateful.
Amanda
