We walked out of the doors of the hospital with Noah, for the very first time after 49 days inpatient... and walked right across the street to our temporary home with him. It's felt weird... like we were bringing home a newborn, but he's been here for 7 weeks already. We weren't exactly sure what to do with him- but were excited to put him in his mama rue, and snuggle with him on the couch.
The smallest things have been so special to us; we really didn't think we would be one of the "lucky" ones to go home during interstage. You see, when we started this journey, and you're told that "this is very rare, only 1%".. we tried to remain so positive, and at times we did, but after many appointments, doctors telling you all the what if's that could happen to your baby during surgeries.. you start feeling doomed- and start preparing for the worse. I know, a terrible mindset right?
We prayed every night, before every doctors appointment, but eventually, we were so angry and didn't understand why our God would make an innocent baby go through so much. Although we will never know why, we have had so many things placed in our path to show us HOW we will get through this, together. It hasn't been easy thus far and we know it's only the beginning.
During the interstage period (the period between the Norwood and the Glenn), we must stay within 45 minutes of Texas Children's. The week prior to discharge, my mom flew in to town to help with Noah, and my best friend came all the way from DC to help me get our temporary apartment set up for Noah's arrival. I am not sure how we got so lucky to have such amazing friends and family that will go out of their way to help us!
Brandon and I had to learn about all the medications Noah is on, how to administer them (he is currently on 17 doses a day, including two shots) and how to chart Noah's weight, saturation levels, and heart rate daily. We learned about the signs to look for and how to page the 24/7 cardiologist on the Single Ventricle team. I knew with all of the prep, that home was coming soon but the doctors made no promises.
We needed to work on Noah taking 85 percent of his feeds during mouth before he could get his NG tube out. And going home was not possible until the NG was gone! Feeding his hard for these babies, they get tired faster and in Noah's case, he wasn't able to eat for over a week due to the chylous effusion, so his stomach was still adjusting to getting such large amounts of food. Noah showed us what a stronger little guy he was and in about a week was taking the bottle like a champ, and on Thursday we were able to get his NG Tube out.
Coincidentally, we had previously set up for a photographer to come that day to take newborn photos of Noah. I wasn't sure when we would actually be released and I didn't want to pass up the opportunity to get newborn photos of him. I had been recommended by someone on Instagram the photographer, her was Sydney and after we met, I knew that it was in fact no coincidence at all that, God had this planned all along. She has just had a baby boy, born the SAME day as Noah, and she so graciously took the time to take Noah's photos!
She texted me later that night saying that her and her friends wanted to arrange some meals for us. She asked if it was okay to post about it. I said yes and less than 24 hours later she notified me that there was $1900 raised! She also shared Noah's story and gathered more prayer warriors.. we are still so shocked and thankful by the support! In addition to everything that Sydney has done, she has also been an amazing friend already and I am so lucky to have met her.
After our weekend of Brandon and I rooming in, where we were 100 percent responsible for Noah's care to "prove" to the nurses and drs that we could handle it and they were there for any questions. Monday was here, we were packing up, rounding with the doctors and waiting for all of our supplies to arrive, Pulse ox, Lovenox, and other medications. It felt so surreal. I have always been on of those people, it doesn't hit me until its happening!
So when the nurse was going through the discharge after summary in the hall way, outside of room 2202...I burst in to tears. Those were tears of joy, we were going home (kinda)...fear at whats to come, and disbelief at what mountains our little family just conquered the last 49 days. We gathered up our belongings, put Noah in his stroller and left floor 22, knowing we would see it again in a few months but embracing every moment of this phase in our journey.
Brandon started traveling again with work, so Noah and I were solo most of this week which was a little terrifying. But I quickly became Noah's mom nurse. With so much support and help from other heart moms that are going or have been through this journey, I was able to fully prepare for life at home with Noah.
Wednesday we had our first clinic visit at Texas Children's where we met with the doctors of the single ventricle team. Noah wasn't gaining weight and this was a problem. If Noah does not gain weight for more than two days, we have to bring him in. Unfortunately, it was day two and Noah had lost weight. I was panicked.
The doctor told me that either he needed to gain weight and meet the minimum feed requirement, or we were going to be readmitted... since, every feed has been super stressful so leaving the house for drs and getting out of our routine for feeds is enough to send me in to full blown anxiety attack.
We have been getting used to our routine at home and some moments I catch myself completely forgetting about Noah's condition, other moments, I find myself staring at his chest making sure he is breathing or rushing to get the pulse ox to check his stats. I have heard a lot of "I don't know how you guys do this"...God has given us so much indescribable strength everyday.
Next week we have 5 doctors appointments for Noah, where we will check up on his blood clot and have another echo for his heart. Every other week they will do an echo of Noah's heart to make sure nothing has changed and this will also determine the timing of the next surgery, The Glenn. Right now, it is scheduled for December 27th. The team has called once a day this week just to check in and see how things are going with Noah and I have had to page the team a couple times if I have noticed something seems off. We are praying for many more uneventful days at home with Noah<3
Kasie, God is definitely with you, Brandon, and especially Noah. He give us the strength we need day by day and He never leaves our side. Ron and I are so pleased that you are holding on to "the hem of His garment" and healing is happening every day to your precious Baby Noah. We praise God that you are not calling yourselves "lucky"; instead you know you are BLESSED in the Name of Jesus! Thank you for sharing your life with us. We love and pray for you daily.
Ron & Maria Walton