November 18, 2023

We had some answered prayers today. The results of the CT scan came back, and the pulmonology team does not see any issues with David’s lungs. He remarkably does not show any signs of having nutmeg lung. There are some pockets of his lungs that haven’t fully opened up, but they should as he grows and his lungs develop more. We are so thankful that nutmeg lung is no longer a concern. Our anxieties and fears have been greatly reduced at this point. 

David continued to take the bottle very nicely for speech. They would like to get a swallow study done with him though, just to make sure that while he’s drinking, the fluid is going to his stomach and that he’s not aspirating it. They also received the go-ahead from the cardiology team to increase the amount he gets in the bottle starting tomorrow. I gave him his second bottle today, which was nice. Everything is so new and different with him – it almost feels like we are first time parents again as we learn how to handle him.  Everything has to be done a certain way or risk injury to him. Even picking him up and holding him has risks if not done properly, as does moving his arms certain ways. It can be overwhelming sometimes making sure we’re not going to cause him more harm. 

It took several more attempts, but David got a new NG tube placed today. His feeds that do not come from the bottle will likely transition to using that tube to put the food in his stomach. The hope is to put an amount of food into his stomach in a shorter period of time, rather than continuous feeds to his intestine. Eventually, whatever amount he doesn’t take via the bottle will then be given via the NG tube (and maybe medications as well). Hopefully, he’ll start to feel hungry once that happens so he’ll be happy and hungry for the bottle. 

Otherwise, it wasn’t a very exciting day for David. His medications are being adjusted to try to find a good balance for his blood pressure. I watched a nurse perform the injection today so I kind of know how that’s going to look going forward. Adam gave him his injection tonight. David had some labs drawn, and if they come back with good results, he’ll be able to get the PICC line removed. That would be wonderful and free up his leg and make him that much easier to pick up and hold. Otherwise, he got some more cuddles today and visits from his sister and brother. They loved seeing him, and then they went outside to play on the playground. David’s room overlooks the playground, so they are able to wave up to his room. We took the older kids to see Santa at Cabela’s and then returned to eat some lunch before they went home with daddy. It was a nice relaxing Saturday otherwise for David and he got caught up on some sleep and got some more cuddles. Each day we get a little better at picking him up and returning him to his crib unassisted.