Dalton was admitted to the cardiac step down unit after 5 days in the cardiac ICU. Getting to the step down unit was a huge accomplishment. The most exciting part for Jonathan and I was the fact that we got to actually stay in the room with him while he was being monitored at the nurses station outside of our room. Walking into the hospital knowing that we were going to get to finally hold him and care for him was an exciting yet very scary experience. As we sat holding our precious little angel, every time anything beeped or if he struggled to breathe even once, Jonathan and I looked at each other with terror. We always said that we were going to be calm parents but that clearly went out the window. The first full day in the step down unit was absolutely insane. We had about 15 different appointments set up with different doctors, specialists, and therapists. I have never felt so overwhelmed with so much information. It was kind of a bummer because we didn't get to actually enjoy the day with him at all. The Doctors also made us put in an NG feeding tube. He can take his bottle, but he gets so exhausted that he wasn't intaking the amount of calories he needs to heal. I think that having us put the tube in was more traumatic for us than it was for Dalton. I also think the emotions of the exhausting day finally overcame us as we broke down while placing that tube.
That first night was by no means easy. I was also in excruciating pain and it seemed to only be getting worse by the hour. I continued taking my pain medicine and just pushed through the pain to do those feedings and stay up with him when he cried. We spent 3 days in the step down unit and they finally let us go when they felt we had earned our temporary nursing degrees. Having to learn to do everything on our own was overwhelming but we knew to get him home and start our life as a family it was essential.
Going home was a very exciting day and we were so excited to have our first night just the 3 of us as a family. The excitement turned to worry when my pain only got stronger and I started getting violently sick. I knew something was not right but all the Doctors had kept telling me it was just from the delivery and it would start getting better eventually. After a trip to the emergency room and a wrongly diagnosed infection I made an emergency appointment with my OBGYN. They were convinced it was from the delivery as well and said if I felt more comfortable I should go to the GI for the stomach pain. The 3 nights I was home with Dalton were the hardest of my life. Hearing my child cry and not being able to console him because of my own pain depressed me to no end. Luckily, I am married to the most amazing man ever and he did absolutely everything! I swear at one point he was feeding Dalton with one hand and holding my hair back with the other. I have never been so thankful for someone in my life. When I finally got into see the GI they looked at me like I was crazy for not being in the hospital with the amount of issues I was having. They admitted me immediately. Finally someone was going to do something to help me, and I couldn't have been happier. I was missing out on my son's first days at home and I was so angry. Not even knowing that he was going to make it to this point and then to not be able to enjoy it was driving me into a deep sadness. The first night in the hospital I stayed by myself and Jonathan stayed with Dalton. He had it all under control. I am not sure that a lot of first time Dads would have been able to handle everything that Jonathan did but he did so with grace and ease. My amazing sister in law, Katherine has also been such a godsend. She has helped Jonathan and I with so many nurse questions and watched Dalton when we were trying to get all of my health stuff figured out.
They started running tests the second I arrived and continued through the night. No answers. It was so frustrating! Two days later they ran a test and finally discovered an ulcer the size of an orange in my stomach. All of the pain medicines that they kept giving me were basically burning a hole in my stomach and causing the two weeks of pain. When I came out of sedation from the procedure the first thing I asked was if they found anything. After hearing the nurse tell me they did see something I was elated. The Doctor said she had never seen someone so excited about having an ulcer. I had to explain to her that I was just excited to know that this wasn't normal and I wasn't crazy. It felt awesome to finally have answers and know soon enough I would be getting home to see my baby.
We want to thank everyone for your continued prayers and support for this journey ahead. Our path is unknown but one thing is for sure that God has a special plan written for our little boy. God knows every fiber of his being and for that we are so thankful. Being reminded by the geneticists of the problems Dalton will face makes me only want to pray harder for him to prove science wrong. He has already defied so many odds and I truly believe he can continue to do so in his life. Please continue to pray for our strength to care for our special angel and may he only know love in his life.
Trying to sleep whenever I could.
Dalton's big boy bed in the step down unit.
Jarad and Jennie came to bring us dinner and meet Dalton.
I may or may not have been freaking out here.
Daddy driving home.
First diaper change in his new room.
Lyla and Aunt Katherine have come to play lots. Lyla loves "her baby".
Uncle Adam enjoying some quality time.
Daddy giving me a bath. I liked it.