Oh, what an insane last few months. I feel like I am always starting these posts this way, because truly it feels like we are on a roller coaster that we want to get off of, but can't.
The end of 2022 we made some incredible memories. Noah's Make a Wish trip deserves its own post, it was very special! After that trip we took a weekend trip to spend a few days to go to my sisters lake house and spend thanksgiving with family. We got to take a little break from transplant clinics and went from every two weeks to every month to get through the holidays.
Christmas we spent 2 weeks looking at the beautiful white sandy beaches in Pensacola and had a lot of family time. We also started having a lot of conversations with Noah. Letting him know that we soon would be staying at the hospital to wait for his heart, and also letting him know that it will make him feel much better. He asks a lot of questions and sometimes he will wake up and ask if he is getting his heart today. I always respond- not today bud, but very soon.
We came home before New Years, and there were a lot of tears shed as we said goodbye to 2022, knowing what 2023 will hold. Being separated as a family and knowing that Noah and Elodie will be so confused.. The pain and discomfort Noah will have to endure. But also excitement for Noah to have a second chance at a better quality of life. On the other hand feeling so guilty that we are praying for this miracle to happen, because we know what that means; another family has to go through a heart breaking loss. More feelings than one can comprehend.
The last few months Noah has really started to struggle with feeds. He will have some really bad weeks, and then some good days, only to be followed by another bad few weeks. Ultimately his time home is coming to an end, his weight gain has been an uphill battle and he needs extra support. His 02 sats continue to drop, making him "more blue". Every room in our house has a spot for vomit bags and chucks. As much as we are not ready for Noah to go inpatient, we know this is the next step, and we also know that we are working against time now. Since he isn't a candidate for VAD/Berlin, it's important we do not wait until Noah gets too sick to put him inpatient. So that is the plan. Right now we are tentatively being admitted mid February or earlier.
Noah will get a PICC line placed and he will start meds to hopefully optimize his heart, as well as IV nutrition to help with his weight gain. Once inpatient, he will be listed at a higher status to get a heart, however, the wait is still 4-6 months inpatient. It is hard to imagine life in the hospital with Noah for that long, it is not going to be easy for him and I am trying to plan as much as possible to give him the most normalcy as this long wait begins. We are so blessed that in many ways Noah is doing well, he is walking, talking and playing still but of course has many moments of exhaustion. With him being in a lot of ways a normal 3 year old, it will be a challenge to keep him busy and keep his spirits up all day stuck in the hospital. When he was a baby it was much more doable to put him in the crib and run to the rest room or to grab a bite to eat, now Noah is so aware and even going to the bathroom he wants to go with or panics being alone.
It's been a surreal feeling that this time is less than a month away. Once Noah gets admitted, we will not be bringing him home until he has a new heart. It brings a lot of emotions and unknowns. I find myself day dreaming about how life will be post transplant, maybe less meds? more energy? In a weird way I will find myself having some sadness when I am washing syringes or mixing up his formula, and thinking how I will weirdly miss these things that have become our normal. However, I am really looking forward to focusing on my role as a MOM to noah and Elodie, without the running todo list of medical tasks to take care of.
The anticipation of admission has been interesting, for my type A personality, I have a made about 10 spreadsheets of schedules for the hospital, to do lists, packing lists, learning schedules for Noah and daily games, date/activites todo with my days with Elodie, and all of the other things, this time has probably given me a little too much time to prepare (haha) but we have really needed to get our ducks in a row.
My mom will be moving in with us for the remainder of Noah's admission (and secretly I will be working on convincing her to move here full time ;) ) as its the only way we will stay afloat with Brandon still needing to travel weekly for work. The next couple weeks we have some pretty exciting things coming up!
Elodies 2nd birthday party and the Make A Wish Ball. We are looking forward to seeing a lot of family and friends the next two weeks so they can see Noah before admission as there are only 4 visitors allowed during his stay.
We have so many great friends that have stepped in to help, offer help with elodie, meals, you name it, and we really wouldn't stay sane if it wasn't for you all!
Many people have asked how they can help from afar, and we appreciate it so much. I am working on a PO BOX for Noah so that letters or books can be sent.
I made a wish list for Noah of things we will need for him in the hospital and games/books to keep him busy- lets just say the entire list showed up at our house within a week- thank you will never be enough for all the love and support we have received for our boy, and to our family. I am eternally grateful!
Once we are admitted I will try to keep everyone updated on here, but for more everyday updates please follow us on Instagram as it is much quicker to update there!
2023 The Year a MIRACLE happens.