PSA; this update will be all over the place; that's the reality of my brain right now.
Noah was discharged February 6th and I loaded up our stroller with bags on bags, and Noah, and made our way across the street back to our temporary apartment. It’s been a lot adjusting to the Gtube with Noah’s vomiting still being pretty significant. At first, the G-tube really freaked me out but has gotten easier week by week. Now we prep for our move back HOME.
This will be Noah’s first time being HOME HOME, and it’ll be my first time home in 8 months. I dreamt of this day; coming back, as a family of three (four including Sadie).
The truth is, there were many times that I didn't think it would happen, the odds have always been against Noah.
Terminate the pregnancy, the doctors said, he will likely not make it to birth, and if he does, he will need many surgeries, and will probably not make it to his first birthday. I feared of setting up a nursery only to come back to it with empty arms, so we didn’t.
And then, Noah’s heart failure continued to get worse and the transplant evaluation started. The average wait time for an infant heart is 5-8 months..then the recovery of a transplant, we were looking at being here for another year- so we listed our home for sale, because nothing else mattered except getting Noah better, whatever we had to do!
But Noah's heart was running out of time, and we had to intervene before he got so critical, so we moved forward with The Glenn.
I remember vividly, this doctor coming in, telling me that she’s “told the team over and over that they shouldn’t do The Glenn, his heart was too weak and he probably wouldn’t recover enough to even come off bypass”. And partially she was right, he had a really, really, rough recovery: cardiac arrest, paralyzed diaphragm, losing an ungodly amount of blood, chylous effusion, collapsed lung, emergency open-heart surgery just hours later after The Glenn, an emergency intubation a week later and us hearing the words he wasn’t going to make it at 3 am with bloodshot teary eyes…. It has been hell.
But, Noah has proved those that have questioned his strength, wrong. Not only has he recovered from The Glenn, but his only working ventricle has gotten STRONGER, and his leakage has DECREASED. We know things can change fast… but let’s just soak in that they have IMPROVED when so many doctors didn't think he had a chance.
And now we are here; Beginning to tape up the unpacked boxes to go home home. The boxes that we never unpacked because that meant we were here to stay, it meant heart transplant, and we were never ready to accept that reality. After 8 months in Houston, 5.5 months in the hospital, we are one week shy of going home. We aren’t sure for how long, but all we can do is hope that Noah continues to show us how strong he is and we will have a few more years until his third open-heart surgery.
I am so unbelievably happy and thankful we are home and to be out of that environment, but my nerves have been even more a wreck since being home. Figuring out this new normal, more meds, more appointments, more therapies and a Gtube / feeding pump. As our appointments/echos get farther and farther apart and Noah continues to be stable, the anxiety grows. The hospital monitors, the beeps, the echos... those have been our normal since Noah's birth.
Those have provided me with a blanket of comfort, that everything was okay, and if it wasn't then he was right where he needed to be. But we are heading home, farther away from that security blanket and I am freaking out. Many heart moms that have walked this path, seen the terrible things like your baby open right before your eyes, heard the sounds, say it's PTSD. It's trauma as things that happened start to sink in.
I didn't have time to think when we were inpatient when Noah was unstable. I was in survival mode. But now, as the dust settles this becomes more and more real and now, Noah relies even more heavily on me; my judgment on if something is off, its scary at times. Heart Failure symptoms (irritability, fussiness, vomiting)...can be hard to differentiate between normal baby stuff. Noah is also starting to teeth and his baseline puking is due to his reflux/gut immobility.. It is quite a lot!
I know all moms have these fears and worries but some of this is not normal and is not healthy. I have a huge fear that I will miss something and fail him.
Or sleep through a medicine alarm..
Or not hear the pulse ox machine go off if his sats or heart rate go out of range....
The list goes on.
I have faith that this too shall pass and this anxiety will subside and I am looking forward to getting home and soaking in our new normal. If you can imagine, this has been a huge strain in all aspects; faith, marriage, family/friendships, physical and mental health.
I am thankful for a strong support system of other heart moms that, get it. That understands our kids look so normal but things can change in a "heartbeat".
I appreciate everyone that continues to show up for us, even strangers.
Sydney, the incredible photographer that came to the hospital after Noah's Norwood and took his newborn photos that I will forever cherish, has done it again!
Our boys were born on the same day, and even with a newborn, she has brought coffee, Christmas dinner, and raised funds for uber Eats gift cards and target cards that have been a LIFESAVER when things were too critical to even go down to the cafeteria in the hospital to eat.
Last weekend she took our first ever family photos. We have maybe 5 photos of all 3 of us together since Noah has been born and we were either standing near the hospital bed or in the hospital hall.
She said she dreamt of taking photos of all of us one day, outside, out of those 4 dark walls; you can see her love for Noah and the sincerity want to give back to this random family who reached out to her on instagram (aka me)! I will forever cherish our friendship.
So we decided to meet at the park right near the apartment. Noah was in a terrible mood and had barely missed my white pants as he puked up bright red Tylenol while we loaded up in the car to head to the shoot.
And he was playing shy and wouldn't crack a smile...the entire time!! And if you know Noah, you know he smiles all the time.
But despite the poker face Noah was giving, and the multiple spit ups... she was patient, her talent is unbelievable and her soul is the sweetest! All of my Houston friends- please look into hiring her for your next shoot! https://sydneyarmesphotography.com/
I have cried looking at these photos. Who would know, this sweet boy has been through more than most of us in a lifetime?
God placed some extraordinary people in our path to show us light on this rocky road.
Our amazing neighbors from home, who most we have never met, arranged to have the house deep cleaned before we bring Noah home next week and stocked our fridge. We are just showered in love, and I can't put into words just how thankful we are. To see how many lives Noah has touched is breathtaking.
We have one last appointment on Monday, Noah will have an echo and some other tests. And then... the movers arrive on Thursday and we will be making our way home.
Please pray for good (or at least stable) news Monday and a safe, uneventful road trip back home.