I apologize for the silence, the time has gotten away from me. We have been soaking up all the time with Noah. He is a busy little boy. The first couple of weeks I was attempting to get him on a schedule while going to daily doctor appointments, so it wasn’t working out too well. I also was just getting used to taking care of a baby, solo, since B has been traveling every week and working a lot. The appointments have finally settled to 1-2 x a week which has been a nice change!
Noah had his ultrasound to check on the status of his blood clot in his leg. I felt so sure that we were going to be able to discontinue the Lovenox shots.. unfortunately, we got the results back almost immediately and he has TWO blood clots and the one that we had originally gotten on the anticoagulant for in the first place, hasn’t shrunk in size at all. I was so discouraged.
This means that we have to continue the Lovenox for another 6 weeks and then we will do another rescan. I hate giving him those shots twice a day, I know how much they burn, since I was on them for a bit while pregnant with him, and his poor little legs are so bruised. We will have a follow-up ultrasound on November 5th to see if the clots have gotten any better.
We have gotten off of a couple of medications so that has been nice! We were on 17 doses when we were discharged and now we are down to 9 doses per day. Noah had been gaining weight nicely, but the doctors would like to see him gain a bit more since right now he isn’t on the growth chart and he needs to be 11 lbs by the next surgery. These babies' hearts work much harder when eating, which results in burning more calories and is just plain exhausting for them so feeding can be a struggle.
Luckily, Noah has been doing pretty well with eating but the last couple days we have been struggling with weight gain, and this could mean his heart is working extra hard and he’s burning more calories than he is taking in… The doctors called me today and told me that if we don’t see a weight gain tomorrow morning, then we will need to head to the ER and be readmitted.
My supply has been cut in half since we got home, and I have been struggling to find the time to pump in the day (Noah will not breastfeed since it's much harder for him than taking the bottle), but I have over 100 bottles in the milk bank at Texas Children's from when Noah was unable to eat after the Norwood. We weigh Noah each day in the morning, check his sats multiple times a day, and chart his food intake to make sure we are hitting his minimum goal.
Each week when we go to clinics with the single ventricle team, we bring his binder which has all the daily information that is charted, and we do an EKG and Echo. Everything has been looking stable, but last week I got a surprising call in the evening that Noah's heart looked like it was not functioning the same and they wanted to repeat the echo since he was upset during the echo it could have affected it.
Noah and I went in this week for his clinics and found out that Noah’s function (the squeeze of his heart) has decreased from mildly depressed to moderately depressed. He is still looking really good physically, so we are unsure of what is causing his heart to decrease in function. However, all of this is terrifying. And as much as I love his doctors, they can bring up really scary things, and worse case scenarios… while sometimes forgetting they aren’t just talking about a diagnosis, but my baby's LIFE.
Words like heart transplant and failure were mentioned. I broke down. Holding Noah, while the doctors hugged me and handed me tissues. Just when I felt things were going well, and told myself to take a deep breath….
we find out that it’s not. I am reminded that Noah is still very sick, and just because he looks well, doesn’t mean that he is.
I feel defeated. I feel angry. I have found myself sobbing in the shower at 2 am. Not only for our situation but the heaviness of the other families that we have met on this journey.. it’s all heartbreaking and something that I will probably never understand. Will I ever be able to breathe? Will we ever see the light at the end of the tunnel?
But at the end of the day, these babies need us, and we just have to keep going. After the shower sobs, we pull it together, and the game face goes on. I know that Noah’s life depends on me right now and anything that seems off, to the hospital we go.
The doctors let me know what to look for on Noah that would bring any red flags. Next week we will have another echo to check on his heart function and make sure that it isn’t continuing to decrease more. This is likely to change the plan of action, and Noah’s Glenn ( the second surgery ) will be much sooner than we anticipated.
Noah loves taking walks in his stroller so with the weather getting cooler we have been trying to do this more often. He has given us so much joy already. He has such a personality and loves to play and snuggle! We are remembering that each moment with him is precious.
During Noah’s Baby shower, Noah's God Parents had each guest write a letter in a journal titled “Notes to Noah” that he will read on his 18th birthday.. What a special gift!
I would love to continue to add to these letters. If Noah has touched your life and you would like to add to Noah's book, please send your letters our way to the address below.
1850 Old Main Street U2507
Houston TX 78628
Thank you to everyone for all of the support! Please pray for Noah’s heart function to improve, for his weight gain to increase so we do not have to be re-admitted this weekend, and for him to remain stable the next few weeks as we wait for the next surgery.
We love you all.