Right after my last update, Brandon and I had a special weekend on the ranch where last year sporadically eloped, 7 months pregnant, before we started this crazy rollercoaster.
Ever since that day, I had prayed, that one day we would have the opportunity to all go back, as a family of three. So we did and we even recreated our wedding photos with Noah. It was such a sweet moment! We only have the sneak peek photos right now, but I am obsessed with them all!
On May 7th, Noah went in for his CT scan and did well. Only one parent was allowed due to COVID, so Brandon sat in the Dell parking lot and waiting. We did not have to be admitted and Noah did great with the sedation so we were able to come home just a few hours after the CT.
The CT scan showed a couple of collaterals about 1.2 mm in diameter, which isn't that big and made them believe it wasn't the culprit of his depressed heart function/no weight gain.
As many of you know, we have had to make some difficult decisions regarding Noah's care and have finally decided to transfer all of his care to Dell Children's.
There is a long list of reasons why we left TCH and transferred to Dell, and being close to home isn't one of them, we would travel to Australia if that's what Noah needed! Thankfully the surgeons here are THE BEST in the nation for HLHS babies.
I won't go into all the details, but just know that we put a lot of effort and thought into this decision, and we are so happy we did now.
Since November, we have been on the struggle bus with Noah's feeds and were given no direction while inpatient other than, it's probably just his heart failure.
We had an echo May 14th which showed his Tricuspid Valve regurgitation is slightly better from upper moderate to now mild to moderate and his function is still the same no worse, no better.
Since we have moved back to Austin we have had so much support from our team here in regards to feeds and the last few weeks I have been feeling so defeated.
After trying what feels like everything, changing volumes, rate of the feed, trying a list of different formulas, and real food blends, nothing made any difference. And then.... about a week ago, his vomiting nearly stopped altogether, all of a sudden, out of nowhere!
Noah went from vomiting 80 percent of his feeds a day (10-15 times/day) to having only 1-2 SPIT UPS!!!! Like what??? Seeing him turn blue, and retch and gag and vomit ALL day with every feed, was so hard to watch and made us feel completely helpless. We HAD to feed him, but every feed came with a bunch of anxiety for us all because we knew what was about to come!
I was certain that the vomiting was the cause of Noah's nonexistent weight gain and that once we got a handle on that he would shoot up in weight....NOPE.
Once he stopped puking he was getting even more calories (30k/cal) and volume (860 ml/day), he started losing weight, he still remains around 6.7- 6.8 kilos or about 14.5lbs. This to me was a sign that his heart was just working too hard and made me feel more at peace that we had to have the cath!
My parents have been unable to see Noah since February, due to COVID but I NEEDED to see them. So they got tested and drove to our house this past weekend with Miss Sadie, our King Charles Cavalier, who they have been watching for over 10 months now. They will be staying with us for at least a week or two to spend time with Noah!
Noah has never met Sadie and he was unsure about her at first, but just the last few days that have quickly become friends. it's been so sweet to watch.
Noah went for a cath yesterday morning, May 27th, and a plan to possibly coil collaterals, but also to get more information on his pressures.
I have been sick over it! With Noah's heart function being where it is, they told us all the things that could happen. We have talked to HUNDREDS of doctors since Noah has been born, that all are involved in Noah's care, and it's hard to remain positive when almost all of them are very doom and gloom.
We have lost some hope the last few months and I have been preparing myself that Noah likely won't make it to the Fontan. It's hard not to play a million different scenarios in your head of the what-ifs. And it's hard remaining positive when you are being slapped in the face with the reality of this situation and Noah's future daily.
But then cath day happened.
Brandon and I were both able to be with Noah as the COVID restrictions have been lightened. We arrived at 630AM to the hospital where we needed to check-in and Noah went to pre-op around 6:45am. In pre-op we mostly just meet with the team that will be there for the procedure and sign consent forms. While we do that we get Noah dressed in his hospital gown and wiped down in prep to go back. Noah loves the extra attention and every time someone new came in he was waving and being a character.
We walked with him to the door of the cath lab, and the anesthesiologist took him back at 8 am. The cath was expected to be about 3 hours and we would be getting call updated every 1.5 hrs.
Brandon and I walked around the hospital, grabbed a coffee, and just waited. There were THREE heart families from TCH that we know also here at Dell for open-heart surgeries and caths. It was such a great feeling seeing people that we know! Please pray for these families as they are all in the ICU with their kiddos recovering.
The first update we received was that Noah was successfully asleep and intubated, and all was stable.
The second update was at the three-hour mark and they were done measuring all the pressures and now would move on to coiling the collaterals. Everyone has collateral vessels but they typically not in use because they are so small but in someone with a congenital heart defect, the collaterals can become enlarged. They are pretty common in these kiddos and can cause a lot of issues, one being worsening heart failure.
When the collaterals get enlarged, it may let blood flow from an artery to an adjacent artery or it may carry blood downstream and then back to the same artery, usually they are not helpful as it is making the heart work harder and for no benefit!
The third call I received was that I needed to meet the nurse in the counsel room to sign an additional consent. They found that the central area of his Pulmonary Artery was very narrowed. They called in the surgery team and decided that they would balloon this area as well. She then told me that one of the collaterals Noah had was the largest they had ever seen, measuring a little over 5 mm in diameter.
The fourth call was that they were completed with the cath and the cath doctor came to speak with us. He showed us the photos of the "monstrous" collateral and the other two that he coiled as well.
He was so optimistic that this was the answer, and he confident this would help his heart function and get us to Fontan. It was the first time in a long time, that I could see the light.
We probably won't see any major changes at first, maybe just overall him feeling better, and tolerating feeds more! But in a couple of months we will hopefully be able to see an improvement in his heart function as a lot of weight was just lifted off of his heart!
We were able to see Noah about 30 minutes later and they had just extubated him. When we walked in he was waving and smiling at everyone. They had to strap his feel down with blankets to the bed because he kept putting his feet in the air.
The anesthesiologist wanted him much more asleep but let us know they had to give him way more sedation than expected. For the cath, they went in by his neck and in his groin, so Noah needed to lay flat for 6 hours. Now the challenge, keeping a 10-month-old flat and still.....
We eventually had to crank up the sedation because Noah was very irritable and screaming. He kept trying to pull his IVs out and would get SO upset if you didn't let him.
I bathed him, asked for melatonin, and finally got him to calm down and sleep around 11 and he slept most of the night! I am hoping he wakes up in a much better mood with lots more smiles.
He has been tolerating feeds and we are just working on his fluid status right now. We should be able to go home today if he remains stable!!!!!
Thank you to all of our prayer warriors, we are feeling so thankful.
