Monday, November 8

Lots has been happening in the life of our little boy over the last few days.

On Saturday morning when I got to the hospital I found out that Walker needed another blood transfusion since his hemoglobin was very low after his surgery. He looked very pale and unwell. There was good news on Saturday though, too. He got extubated in the afternoon and was able to go straight back to breathing room air. I was excited that this happened so quickly after his surgery on Friday. He is such a strong boy. Also on Saturday, he started getting breast milk through his g-tube. It feels really good to know that all the pumping I have been doing is now being used to help him grow bigger and stronger. He started on very small feeds because his stomach needs to slowly be stretched since it has never had anything in it before. Every 24 hours they increase the amount he is getting by 1mL per hour until they get him up to the amount he should be getting for his weight. So far he has been tolerating the increases well.

On Sunday, after we moved all our stuff into our new apartment with the kids, I was surprised to find him in a "big boy" crib when I got to the hospital. His tone was pink again and he looked so much healthier than the day before. The transfusion helped bring his hemoglobin back up to normal and he was still doing really well with his feeds. I enjoyed holding him in my arms in the quiet evening NICU.

Today was a day of unexpected changes. I got to the NICU in the morning and spent some time holding Walker. I noticed that his breathing felt a little bit raspy. As I was holding him his oxygen saturation levels kept going down and setting off his alarm. The nurse cleaned out the tube in his nose a few times, but it kept getting blocked again with really thick secretions. After talking with the doctor, I found out that Walker was going to need a chest x-ray and was going to be swabbed to test for Covid, RSV, and other viral infections. He was also going to have a full blood work-up and urine test done to check for any bacterial infection. Because of protocol, Walker had to be moved to an isolation room by himself.

After the chest x-ray, the doctor told me that Walker’s chest looked cloudy, so there was definitely something going on but they just weren’t sure exactly what yet. One possibility was atelectasis, which essentially means lots of little spots in his lung that had collapsed because they were filling with air. Another possibility was that he had fluid from his lungs, either from his secretions getting into his lungs or his heart defect. It could also be the results of a bacterial or viral infection. They started him on antibiotics in case of bacterial infection. They put him on CPAP to help re-inflate his lungs with air and make it easier for him to breathe. They gave him a dose of diuretic to help get fluid out of the lungs in case that was the problem. Tomorrow he will have another chest x-ray to see if there has been any improvement or change, and we will hopefully get results back from his swabs. Right now it feels like a waiting game as the doctors try to figure out what has caused this to happen. He will need to remain in the isolation room until he is symptom-free and all his results come back negative.

I definitely wasn’t expecting all these things to happen today. It’s hard to see Walker uncomfortable and struggling and it’s hard not to get immediate answers. I was so thankful today, though, for the diligent and wise care he got from his doctors. They were so thorough in all of the tests they ran and were proactive in getting treatments started for all of the possibilities. They are doing everything they can to keep Walker safe and healthy and it is hard to express how grateful I am for the absolutely amazing care he is getting. He is in the best children’s hospital in the world, and that fact is not lost on me.

Thank you so much for continuing to pray for our strong boy, and for the messages and comments that tell us you are doing so. It brings peace and helps us feel that we are not going through this alone. Here is a list of things we would appreciate continued prayers for:

Pray that Walker is stable and comfortable as the doctors work to figure out what might be wrong.

Pray that we will get a clear answer soon.

Pray for protection for Walker from any viruses that might be present in the NICU, especially as cold, flu, and RSV season begin. Pray for protection from bacterial infection, too.

Pray that whatever ends up being the issue, there is a clear treatment plan and that Walker can heal and get better soon.

Pray that Walker continues to tolerate his feeds well and that the breast milk he is getting helps him gain weight and strength.

Pray for renewed energy for Andrew and I. We are tired. It’s hard to process all of this and at the same time find the energy to be patient and involved with our two big kids and be present for Walker, too.