Journal entry by Rachel Kotheimer —
So tomorrow Max is 6 weeks old. His cute smile is stealing the hearts of all the nurses that we have gotten to know well especially here in the step down unit. The past few weeks have had many ups and downs, but we are grateful that overall Max has been pretty stable with no major setbacks. We have been working on his feeding and gaining weight which is really tricky for this heart condition. Feeding is tricky because with only half a heart that heart is doing so much work to eat and digest it uses up the calories that are being consumed. Also we have to watch for aspiration when he eats. Our swallow study last Monday showed he does silently aspirate while eating. Which can be very dangerous. Also Max’s oxygen level goes down when he his getting fed through the nose (ng) feeding tube which is probably caused by him having some reflux which may be being aspirated as well.
The team determined last Tuesday. that we should be looking towards getting a g-tube (stomach) to help him eat and gain weight to be ready for his next open heart surgery. Also that would keep from any damage happening to his lungs from aspiration.
That Tuesday was a hard day for me as I had to begin wrapping my mind around that kind of feeding tube through the stomach. It was also hard because the g-tube is another surgery we didn’t plan on. It is a minor surgery, but still a surgery. Luckily the world of Facebook is amazing and lots of other heart moms encouraged me that it is actually much easier to manage a g-tube at home rather than an ng tube. It Did for sure extend our stay here which was a little heart breaking.
Anyway with the Thanksgiving holiday we weren’t able to be put on the surgery schedule until tomorrow. We did have a sweet Thanksgiving as a family. We watched the Thanksgiving day parade. Volunteers served some Thanksgiving food for lunch here and then another amazing heart mom brought us some Thanksgiving dinner. Poor Max though was not allowed to eat for 48 hours due to some stomach stuff. Sadly his first Thanksgiving was with no food!! 👍🏻😂
Will and I have learned a lot these past 42 days. God has graciously helped us to grow closer as a couple. Not just emotionally, but some how we have both managed to fit on the small hospital couch in Max’s room to sleep. Normally just one person fits, but I think God is treating this like the loaves and the fish so we both fit! Lol We’ve also learned that the tiny fridge in Max’s room runs really cold and if you leave a drink in there you will be woken up extra early to it exploding in the fridge! Lol
Our son is the sweetest and strongest guy I know. God is growing and showing us so much in this.
Please pray for us tomorrow as Max gets his g-tube. Pray for no other complications and that it sets us up well to spend some time at home before the next heart surgery.
Will and I are so grateful for everyone that has come around us in support. From helping us with food, encouraging texts, cleaning our house, gift cards, and much more it has been a huge blessing.
We our part way through our journey thanks for taking it with us.
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