We were quickly reminded Monday that this journey can throw curveballs even when we least expect it.
Noah was scheduled for his “final” appointment with cardiology in Houston before we were transferred to Austin. The movers were scheduled to arrive Thursday and move our things back home, and Noah’s baby furniture coming the next day.
We had a plan. And it was a good one. One we were finally excited about!
Just a few weeks ago we were so amazed that Noah’s heart improved in both function and TR regurgitation!
The Glenn physiology that he has now is typically much more stable, unlike “interstage” when things could go downhill quickly as we experienced.
And even if things begin to decline. Usually, there are signs.
Color change.
Breathing rate and pattern.
Energy level.
Saturations levels.
Heart rate.
Weight loss.
And I think we can all agree, he’s looking really well ever since he came home. Bouncing in his jumper, laughing, all the normal baby things.
We are still struggling with feeds and lots of gagging/vomiting but this isn’t a new issue and has been consistent since November.
So when we took him in Monday morning for an echo and cardiology appointment, we were upset when the doctor told us that his heart was significantly worse compared to the last two echos and he hasn’t gained any weight at all... not even a single gram in a month, so this was a red flag since heart failure=weight issues.
The doctor let us know she had already called heart failure/transplant team again to get their input and they may want to start the evaluation over to get ahead of the game (heart transplant), as the previous case was closed. Maybe needing to start milrinone again?
What??? How???
We both sat there, in complete disbelief. The doctor hugged us and told us to wait for them to get the room ready where he would be admitted.
How could I have missed this? He was in my care the entire time. Was it because of something I did? The guilt swallowed me whole.
Brandon and I didn’t know what was next for Noah and we called the movers to cancel.
We waited for a room as we got admitted and Noah had test after test.
All passing with good news!
We were most anxious as we waited for the BNP, which we received around 2 am Tuesday night and was 170.
The lowest it’s been since September!! It was such a relief.
After meeting with doctors, they were puzzled as to why the function looks so significantly worse than the echo but everything else looked great and he was clinically doing so well.
They adjusted some of his medications, doubling his diuretics to manage his fluid status and maxing him out on his blood pressure medication. They seemed hopeful that this will help his heart and make it work a little less hard.
But weight gain and holding down feeds is still a problem, so we consulted with G.I. who put him on a new medication for gut motility. We are following up with another GI doctor back home who we are hopeful can determine why Noah is unable to tolerate his feeds.
So with a note good news about his heart, we packed up and walked out of there at 5 PM. And got straight to packing. Brandon had been packing most of the day thankfully, but we stayed up late and woke up early to finish.
We notified the movers that we were ready to go and they arrived to gather our things!
142 inpatient
108 in the CVICU
3 open-heart surgeries
Hundreds of IVs and blood draws
Cardiac Arrest
Emergency Intubation- 5 other intubations
Multiple nights spent praying, pleading for him to make it through the night..
And now, we are home, WITH Noah, and he’s smiling, and talking to us..
I used to drive for hours and hours, I loved road trips, I would listen to music, books, podcasts, but most importantly I would think, clear my mind.
The 3+ hour drive, with Noah in the back. Many flashes of the last few months raced through my head. And then as we got closer to our neighborhood, memories of the walks B and I would take, 30 weeks pregnant, contemplating if we should prepare a nursery, where we should live when we get to Houston, making a plan for each surgery and how long he would be in the hospital…. If only we knew what the road would look like.
Then, pulling up to the driveway, where I used to sit in my car before going in, and ugly cry, 10 percent. I let the statistics eat at me.. I knew there was a big chance that Noah was never going to see home, and I was angry.
Is this road over? Absolutely not.
His heart is very sick, and many people just don’t get that since he looks so well on the outside… it’s hard for me to even comprehend the last 7 months.
He will be closely monitored..He will NEED more open surgeries, possibly transplant, we..just…don’t...know.
When? When he tells us. We don’t know.
Brandon and I have learned to take everything day by day, because truly, we aren’t sure what tomorrow holds.
But today…. We are thankful. So incredibly thankful.
We went to swing at the park next to our house and sat in the sun in the beautiful weather.
Noah took his first bath in a TUB.
Thank you for taking care of us physically and emotionally, so we could give Noah our all.
I still can not believe it.
Now, to unpack!
