A lot has happened since I last posted, and my absence is due to being very very busy with a needy, but a SMILING little boy at HOME!
January 17th we were discharged from the hospital after 3 long months. It was such a pleasant surprise. Earlier that week we had known that we could potentially get discharged to go home and work with Noah on his eating. But Noah kept throwing us curveballs, high heart rate, throwing up increased BNP.. we did echos, Xrays, the whole 9- but everything was stable, thank GOD. His BNP was back up into the 600s but clinically he was looking well- so they think that might just be his baseline now.
The truth is, we were all going crazy. Hospital life, especially when things are "kinda stable", will make you go mad... it's not good for anyone; Noah, me, or B.
Of course, we want to do whatever is best for Noah, and would much rather be safe than sorry, but there is a point when we all (the team, B and I) start to over-analyze every little thing and point it to heart failure, even when sometimes it's just normal baby things; teething, fussiness...
One of the main things keeping us inpatient is Noah not eating by mouth. Due to his heart failure, they will not let us return to Austin with the NG tube (tube in Noah's nose that goes to his stomach and how he receives meds and food) and typically wouldn't even discharge us at all with the NG if we lived in Houston unless we got a Gtube.
As I mentioned before, his refusing to eat could be for many different reasons... it could be due to this heart failure, he may just not have the energy, but it's likely caused from an oral aversion from having lots of negative things in his mouth (intubation, deep suctioning), he may just not be getting hungry enough, the tube is bothering him, and the list goes on.
We work with lots of therapists but Noah hasn't made much progress. Practicing with Noah to eat was not an option for a while. His heart was too sick and even eating could have sent in him to cardiac arrest, then being paralyzed and intubated, it just wasn't possible or our main focus. Putting anything near Noah's mouth the last couple of months has resulted in him crying, screaming, gagging and then puking. It's frustrating.
A few months ago, I remember when Brandon and I talked about the Gtube (a button on the tummy so that you can feed and give meds directly to their stomach). Many of these heart babies end up with one because eating is ALOT of work and its hard for them. We both had the same opinion on it... "Hard no, not happening, we aren't going that route, ...we will do whatever it takes so he doesn't need to get one."
Here we are, months later, and we are grateful that eating problems are our main focus.
Brandon and I still wish that Noah could just magically jump right back into eating but we think that getting him home in a normal environment, outside of the hospital, without a tube down his nose and throat, will help him progress with his oral intake. We talked with the team and asked them to give us a little more time to work with him, we want to feel like we are giving it our all. So they agreed and we scheduled the Gtube surgery for February 3rd.
After lots of talks with the team; they decided that they would let us go across the street to our temporary home with the NG tube. We had a 9 am family meeting and they told me the decision then..They wanted to let us go home, get out of the hospital and wait for the gtube surgery there.
They said "soak up your time with him, do normal things" so that is exactly what we have been doing.
I was so shocked, scared, all the feelings. But we were ready, and a few hours later we got to go to our Houston apartment. It was a lot the first few days. The day I prayed for and some days didn't know if it would ever happen, getting back out of the hospital, snuggling in bed with our baby boy!
So when we walked into our messy apartment later that afternoon on Friday, we scrambled to figure out Noah's new routine. 24 doses of medications a day and a feeding pump, every 3 hours night and day. While still trying to cook, clean, do loads and loads of laundry from the hospital. It was a lot and it was defeating.
Mentally for me- I was terrified and my anxiety was the highest of high. How did I wish for this day to come, and now it is here and I was losing it? Being home after The Norwood was a piece of cake compared to this.
Almost Noah's entire life, we have been inpatient, with the numbers flashing right above our eyes, allowing us to see if his heart is beating, how fast he is breathing, and his pressures... it becomes normal and our comfort zone. We monitor Noah's vitals at home overnight, or if there are any concerns, but I have tried to wean ourselves from them completely. Allowing him to take a nap without it.. even though I find myself staring over him every 15 minutes, counting his breaths.... or waking him up so I know he is alive.
But that was a week ago...
We've made a lot of progress since then. Noah was and is still throwing up quite a bit and it's really hard to see. We are hoping that the Gtube helps that. We have got the meds and feeds down to a T, and we have even been able to take walks and do "normal things", feeding pump and all! Noah has developed so much in just these two weeks at home. Smiling, laughing, playing, almost rolling all the way over! It has been amazing to watch.
We have had one trip to the ER because Noah pulled his NG out while sleeping.
Yesterday was his 1/2 birthday and we let him have some cupcake... he wouldn't eat it (that's when you know the oral aversion is bad. bad mom joke) but loved playing with it!
We have had appointments every week with the Single Ventricle team and just recently had an echo. The echo prior to discharge we received some unexpected news that his Glenn is narrowing or that there are collaterals forming around it- they were not really sure of which. Right now, he is not showing any of the clinical symptoms (enlarged head and lower saturation levels), so they will just monitor it and will be scheduling us for another echo and CT scan next week.
His heart function remains the same, upper moderate to severely depressed, and his tricuspid valve regurgitation is upper mild to moderate (slightly improved from his moderate/severe before! AMAZING).
Sunday, Feb. 2nd we will be readmitted into the hospital to prepare for Noah's surgery Monday morning. Because of his heart, the surgery will need to be in the Cardiovascular OR with CV anesthesia.
Any surgery or procedure is scary. The last procedure that Noah had was the bronchoscopy back in November, and that night was the night that we were told he may not make it which resulted in emergency intubation. We are feeling that fear and those memories creeping back in but remembering that Noah is in a more stable place and much stronger now.
The surgery should only take an hour or two. He will be intubated again and they mentioned the possibility of having to put him back on milrinone to help his heart recover from it all. We will be back in the ICU for him to recover. Being put back on milrinone seems like a huge step back, but whatever he needs!
Once he recovers and we get discharged.... drum roll.... WE GET TO GO HOME HOME... It's still surreal and I don't think we will believe it until it's happening, but we are so grateful it's even a possibility. We are currently trying to line up getting our Houston apartment subleased out (our lease ends in August) and the logistics of moving back to Austin. We still do not even have baby furniture and half of our furniture is now in Houston! The next few weeks will be busy but we are hoping to be home sometime in March.
We have been so amazed at all the friends and family that have come to visit, brought us meals, cleaned the apartment, or sent of gift cards. I still can't believe that we have been in Houston for 7 months and everything that our sweet Noah has been through. Every day out of the hospital makes those memories feel more and more like just a bad dream!
You may have also seen the bracelets I started making in the hospital. Brandon has always worn these and introduced me to wearing them. I walked into a bead store near the hospital to look for some beads to make a bracelet that symbolized this journey, Noah, his strength. I picked out some beads and made our "Noah's Ark" bracelet. It's been so therapeutic, to focus my mind on something else when the anxiety is taking over. You can take a look at them here. Thank you to everyone that has purchased some already and supported us. We are really looking forward to getting home and being able to help families going through similar situations.
I will be updating everyone Monday when Noah is out of surgery! We love you all!