Wow, it has been quite some time since I last posted an update on here, and well it's a good thing! There hasn't been much to report and we have just been enjoying life at home and each moment together.
After I last posted, Noah continued to improve week by week. Three months ago, we couldn't even touch him while he was getting fed as it would result in an entire ten-minute episode of retching and vomiting everything. Now, he spits up maybe once a week.
Three months ago, Noah was on 38-42 doses of meds A DAY, all through the day and in the middle of the night. Now, he is on 5 doses a day, no night meds, and sleeps all through the night!
I look back and I'm not sure how we got through that long rough patch, but we did. Oddly enough, once things calmed down, I was feeling more anxious and exhausted than ever. I was constantly worried I was missing something, things seemed too calm, it was like I was waiting for the other shoe to drop and I had way too much time to think.
And then.. I was diagnosed with postpartum depression. Thankfully I have started to feel a little better!
A few weeks after Noah's cath, we went to see his cardiologist and they let us know that there were no changes to the echo; moderately depressed and moderate tricuspid valve regurgitation. However, his body was showing us that he was physically feeling better! My grandfather suddenly passed away, so I had to leave Noah for the first time ever (3 days) and drive to Alabama. I was so nervous but Brandon did great and they got some bonding time in.
Cardiology cleared us to take our first road trip to my hometown in Pensacola Fl a couple weeks after that. We drove straight there through the night, to prevent having to stop anywhere and Noah slept the entire time. We spent a week there enjoying the beach and family time with my parents.
Noah put his feet in the sand and loved swimming in the ocean. We even had an early drive through birthday parade so that we could see some of our friends and they could meet Noah from afar!
When we returned home, we started a tube wean challenge for 5 days where we worked with a therapist and reduced Noah's tube feeds by 50 percent to induce hunger and see if it would trigger him to eat more orally.
Many tubie kids never reach a state of hunger and therefore have no desire to eat orally! By day 3 of the tube wean, Noah was trying almost everything (except purees) but wouldn't fully swallow chunks or pieces yet. He was also drinking milk!
He did so well during his wean and didn't lose weight, that they allowed us to continue. Now, we have been completely off the feeding pump during the day for nearly a month, and he is eating all throughout the day everything Brandon and I eat but still working on swallowing chunks.
He is also consistently taking 10-15 ounces of milk by mouth. Such huge progress!! He is still on the feeding pump for 8 hours through the night but we are continuing to make progress!
We finished Noah's room right before his first birthday and moved him into his crib. He did well with the transition and has been sleeping throughout the night. We had another cardiology appointment and echo and the doctor said that she would be okay with him having the Fontan (the third open-heart surgery needed) as long as it stays stable.
His function is still moderately depressed but his tricuspid valve regurgitation was mild instead of moderate! We have now moved to echos every two months instead of monthly. We know that this is the "happy stage" usually. The time between the Glenn and Fontan and we are glad to finally have Noah in a stable place.
On Noah's birthday, we had another drive-by parade and even had one of our favorite nurses from when we were in the ICU come visit! It was such a treat to see everyone.
Noah was not a fan of the birthday cake and refused to touch his "smash cake". Overall he had a great birthday and we had lots of gift cards that we were able to gift to families in the hospital.
Quarantine has prompted us to have plenty of boat days, although lately, it has just been too hot. Noah has developed such a sweet personality.
Hugs and kisses are given all the time and he is loving Sadie more and more! I was even rocking him to sleep last night, and he lifted his head to give me a kiss.... heart melted!
Thank you all for joining us on this journey, and for all the love you have poured to our little guy!