The weeks here feel much longer. Even though we broke out of the ICU- the days here are busy. Since we are now able to do more things with Noah, like pick him up whenever we want, change his diapers, dress him, go on walks etc- it keeps us busy! But on top of that, we have daily room visits/appointments with PT (Physical Therapy), OT (occupational therapy to work on eating), surgery team, hematology (due to the blood clot), any tests and labs that need to be done, and that’s just to name a few..oh and daily rounds with the medical team to discuss the plan for the day.. so it’s still very busy here, to say the least.
Noah has made some huge strides in the last week and a half!
Noah’s chylous has been under control and the doctors gave us the green light to switch back to full breast milk. I’ve been pumping every couple hours, which had been difficult to wake up to the 3 am alarm to pump not knowing if he would even be allowed to switch back to a full-fat diet. Since we have switched back to breast milk, Noah has had to have daily X-rays, and weekly echos to ensure the chylous is not reaccumulating. Thankfully- it hasn’t, which we are so thankful, and Noah is so happy he doesn’t have to eat that nasty Enfaport anymore!
We have been so thankful for the support of my family and our friends. Last week my mom and family came to visit and help Brandon and me with the baby. We took the weekend to drive to Austin and finish packing our home up and getting it on the market.
We also took the time to go out on a dinner date to one of my favorite restaurants and where we had our first date. Boy has our dinner conversations changed, but we wouldn’t want it any other day! It was difficult being away from Noah so long, especially when you feel like anytime you leave, something happens. He, unfortunately, ended up needing 2 blood transfusions due to his numbers being unstable.
Noah is doing well overall but every day is a new day which can bring ups, or downs. His saturation levels have been very high for a typical “Norwood baby”, over 95 and they would like to see him around 85. The doctors were concerned that the arch in his heart was narrowing, which is a complication that can occur during interstage and can result in additional surgery.
We went in for an echo to check the function of his heart and make sure it was functioning the same. It was, hallelujah. So the doctors are trying to adjust meds to stabilize, but at this point, nothing has worked. His blood pressures are extremely low which means that the medications they would like to go up on (Enalipro), they can’t. Since Noah is acting normal and not looking ill, breathing heavy etc, they are less concerned about the over-saturation levels.
One of the biggest obstacles for these heart kiddos, is eating. Many of them develop an aversion to having things in their mouths and have no interest to take a bottle. Noah has shown many signs that when he is hungry, he wants to eat (rooting especially)! So I have been very persistent to voice my opinion about pushing him to practice the bottle at every chance we get. Since we need to monitor the input and output for Noah, breastfeeding hasn’t been an option, but I have gotten to do a couple “non-nutritive” breastfeeds (pumping, and then allowing him to latch). This has helped me a ton as well. My supply has been diminishing lately, due to stress, lack of sleep, eating and drinking, and just simply not having the time to pump as much as I should be. So I was really happy that the doctors let us do these “breastfeeds” to help us both out.
The one thing that is keeping us here, is Noah’s NG Tube (how he gets all his food and meds) so every morning during rounds, I have advocated that I want to practice more with him with the bottle. The photo above is when Noah pulled his NG Tube out... two days in a row.. naughty boy!!
Finally, over the weekend, they noticed how well he was doing with the one bottle feed a day (taking 20 mls) and they have now allowed me to feed him with the bottle each feed. He gets very tired sometimes, but he finished his first entire bottle today (55 mls) and we are celebrating each milestone!!!
Today was a huge day. I got cleared to do on regular breastfeed with Noah a day! And this morning the doctors mentioned that if he continues to do well, we will be discharged to our Houston home on the “At Home Monitoring Program”, as early as NEXT WEEK! This brings a lot of emotions. We have been here for 45 days.
Just a couple weeks ago when in the ICU, I remember looking at Noah, not able to pick him up, console him, nothing. I felt like he was the hospital's baby and they were in control of everything. As I looked at his heart beating in his open chest, HOME seemed so far away that it was hard to even picture us ever bringing him home. It's crazy what these last few weeks have brought, and how completely different I feel now- unafraid to pick him up with wires.
We were completely prepared to stay inpatient during the entire interstage as it's very uncommon to get released during this fragile period.
There are a lot of checkboxes we needed and still need to take before getting out; CPR classes, a car seat test to make sure Noah can sit in his car seat for 3 hours without de-sating, get Noah taking full feeds and medications by mouth (to get his NG tube out), and Brandon and I both have to complete a 48 hour room in period where we do all of Noah’s care alone. This includes giving all medications (plus 2 shots in the leg a day), daily charting of Noah's weight and food intake, spot-checking him with a pulse ox, and then of course all the normal baby stuff! Brandon and I will be doing the 48 hours room-in this weekend since we hopefully don’t have much time left here :)
Once we are home, we will have to be at Texas Children's weekly for clinic visits, and we will have echos bi-weekly to ensure that his heart function is remaining stable. We will have a direct number for a cardiologist and nurse 24/7 and an “Ace of Hearts” card, which is in case of an emergency and we are not near TCH, we can go to the closest ER, and present this card and they will get Noah in immediately and TCH will come to transport Noah by helicopter or ambulance back to TCH.
Brandon and I are a little terrified about going home; will we be able to sleep at night without waking up and fearing he’s not breathing? Is there a weaning process for the parents- from the machines that give us comfort knowing what’s going on in his little body? How will every little thing, not freak us out and make us rush to the hospital?.. It's going to be an adjustment not being in this “safe place”, but we have peace knowing that we are literally, right across the street!
The other HUGE thing we had to get before getting discharged is a tentative date for the Glenn. Right now that has been scheduled for December 27th.
Brandon has started back at travel this week for work, which is a little scary for me! Thankfully my mom and best friend will be visiting to help out this week while I try to get our apartment all set up and fully unpacked for Noah’s arrival.
Even though Noah is looking well on the outside, he is still very sick and each day can present a new challenge. We are so excited to be going home soon and feel blessed beyond measures, as we know many families who do not have this option and we have seen multiple families leave the ICU with empty arms after saying their goodbyes. Although Brandon and I will never understand why this happens to innocent babies, and good people, we pray for these families daily and remember that each day is something to be thankful for.
We can’t wait to show Noah so many things once we are out, but we have to be VERY careful. His immune system is still recovering, and with cold and flu season we will need to be quarantined from public places, and visits with family and friends for a while. Any sickness could be deadly to Noah during this period with his fragile heart but it will be so nice to even just be at home as a family and enjoy the snuggles until the next surgery.
We, of course, are so thankful for you all, your continuous support, prayers, and love!