Updated: Nov 18, 2019
I can't even believe it has been a month since Noah entered in to this world. We were unsure of how much time we would be able to have with him before he arrived, but I am so happy that we have been able to have a full month and I am looking forward to many more. So much has just happened in the last week, that it's difficult for me to look back at the last month.. or 6 months, and comprehend everything that's taken place. I find myself staring at Noah while we sit in the hospital, feeling so lucky and in disbelief that he's ours!
Last week, Noah had the procedure to ensure that there was no leakage in his lymphatic system on Wednesday and to insert a new central line so that he could start getting TPN and Lipids for nutrition.
There was nothing found on the test that was abnormal, but they did confirm the two blood clots (one in the right leg and one in the atrium in the heart) which he was already being treated for. Since nothing was found, the doctors decided to remove the chest tube and see if the Chylous would heal itself.
Apparently it is something that they see often, where the chest tube is actually promoting the fluid output. If the fluid continued to accumulate in the chest cavity, then they would need to insert a small tube and re-drain the chest, and if there was fluid around the heart they would need to do surgery. There were signs that we had to look out for, such as, breathing too fast. Every morning, Noah had an x-ray to make sure that the chylous was improving and an echo to look around the heart for fluid. Each morning we got good reports that the X-rays were remaining stable.
Noah was still unable to feed during this time and was very fussy and agitated. Even though he was getting the TPN and Lipids, this did not take away all those hunger pains! Monday we got the OK to start feeding again. Since it was 7 days of no food, the doctors wanted to start very small and only the no fat formula. Since Monday he has been taking some of his feed form the bottle and the rest through his NG tube and we have gotten to full feeds!
Noah made a huge step this week and we graduated from the ICU!! We moved to the step down unit, where there is a lot less poking and prodding, less beeps, and you're kinda "on your own". It's nice! We change diapers, and play dress up... it feels so much more normal and natural. Tomorrow he will get the central line taken out again since he is taking full feeds, he no longer needs TPN or Lipids! That means the only lines he will have is the leads monitoring his hart rate and respiratory rate and the NG Tube- so incredible seeing where he is now considering he just had a 10+ hour open heart surgery 3 weeks ago. His strength amazes me.
Although, I post a lot of cute photos of Noah and try to talk more about the positive things, there is a lot of unseen moments and things that I do not like to talk publicly about that are so sad and terrifying. Even though Noah looks great, he still only has half a heart. Everyday could bring something else and we are reminded of that daily. He is going through this recovering process now, only to have another massive open heart surgery in a couple months. It's emotionally and physically taxing and has been difficult for Brandon and I to take care of ourselves. We have skipped meals more than we can count and we barely sleep all while trying to remain strong for little guy.
With the first year of HLHS babies being the most fragile, Brandon and I decided to temporarily move to Houston for the next year and lease our house out in Austin for the next year, and if we feel comfortable moving back then, we will. We found the perfect apartment right across from Texas Childrens (literally one block) where we can walk over in less that 5 minutes, and grab a bite to eat, or take a siesta. It has the most breathtaking view overlooking the skyline from the 25th floor. But even more importantly, when Noah gets out of here, we will still be close if we need it!