On the Move!
Praise the Lord! We are on the move! As soon as a bed opens up on the 6th floor we are going. This will be a huge adjustment for us as we will be providing all of Paul’s care with nursing supervision only. The great news is, we are both able to sleep in the room on the floor and will kind of be able to settle in to a better routine to potentially transition home. Paul is doing well and continues to be comfortably tickipnick (breathing fast) and has been gaining weight. Each day, he is getting 10 ml of breast milk via bottle to see if he will be able to tolerate both the breast milk and drinking from a bottle. He is so tired after he finishes sucking and swallowing the milk! Our little guy is slow and steady so we are taking the feeding stuff at a snail’s pace right now and will perform a swallow study when and only when we are confident he could pass. The study will tell us if he is able to drink the milk without aspirating. If he is, we will likely go to feeding via bottle or breast and feeding through the tube, if not we will tube feed through the Glenn surgery.
We are cautiously optimistic that Paul will continue to do well. Norwood babies (between the first and second surgery) can turn on a dime so we have to continue to remember how very fragile he is. We are taking each good day with stride and continue to realize that we are so lucky for every moment and all the love that we have. Our lives have changed dramatically, even as I write this I am reminded that just a month ago I was such a fast paced person, worried about planning and preparing every little thing to the “t”. Now, my days are filled with calm and joy and uncertainty. I can spend hours hugging my little one, playing with him, changing diapers and looking in his eyes. I love being his Mommy and I feel privileged that God has given us a child with special needs. I wish I could give him my heart or fix his but in some ways I would not change a thing. Paul is loving time with Daddy, too. When Dan comes back from work each night, Paul knows just who he is and focuses solely on him!
We thank you from the bottom of our hearts for your support. We love the visits , food, prayers, and everything in between. Your support means so much to us and we are determined to pay all of this forward when we can. Thanks to all of you for loving Paul. For every love there is a heart to receive it and he has more love than even a whole heart could hold. God bless you!