Jonathan and I woke up in the hospital and got ready as quickly as we could to go down to the NICU. Obviously I was not moving as quickly as I wish I could have been. I was in so much pain but I knew once I got down to see him again, everything would be okay. We went down to spend some time with him and it was amazing. Just looking at him. I have seriously been in such awe that we created something so beautiful. So we stared, and stared, and stared. Our families arrived to finally meet him. They were ecstatic and we were definitely the proudest parents ever! My body started to tell me to slow down and lay down so I went back to the hospital room. While we were back in the room letting Dalton and Mommy rest we got a phone call from the neonatologist. They wanted us to come down for the ECHO on his heart. We went back down and they confirmed what they had suspected in utero. The left side of Dalton's heart is a lot smaller that the right side. It is working hard and the main valve to get into his heart is very narrow. Right now he is still breathing because of a fetal valve (PDA) that God gives us all, but eventually closes after 72 hours. They explained that they could put him on medicine to temporarily keep that valve open until surgery. He needs a coarctation of his aortic valve. They also discovered a ASD and a bicuspet valve. Things we are going to have to have taken care of when he is a little bit older. But right now the main concern is fixing that valve so when the PDA closes he can continue pumping blood. Like I said, these were all things we expected but I guess we just were not prepared when they told us they were going to transport him to another hospital as soon as possible.
Wait a second! I am not even fully recovered yet and you are telling me I have to stay in one hospital while my 18 hour old baby goes to a new one? I thought they were crazy. They told Jonathan that he could go with him but I needed to stay for one more night of recovery. After that everything happened so fast. Before I knew it a transport team showed up with 4 people and this giant cart on wheels with all these monitors attached. When they unhooked him from his lines they asked if I wanted to hold him for a minute before he left. I sat down and prayed over my little boy so hard and told him how much I wanted to be with him. They took him from my arms and asked me to start signing papers. I watched as they placed him in that cart looking thing and strapped him in. Jonathan ran over to kiss me good bye and before I knew it they were rolling out the door. The most important thing in my life was leaving me and I had only held him for a minute. I knew that Egelston was the best place for him but I selfishly wanted to be like all the other new Mom's in the hospital. The ones who got to keep their babies in rooms and change their diapers! I wanted a poopie diaper to change! And just like that, he was gone, I was alone. Without my husband or my son and only a day after one of the most physically painful things I have ever done. My family stayed with me at the hospital for a few hours and Brianna even slept on the cot in my room. Bet she wasn't expecting those 3 a.m. pumpings. Jonathan was able to come back for an hour during a shift change at Egelston, so it was nice to get to say good night to him.
The next morning (Wednesday) I was first to be discharged after some serious begging. Jonathan came and picked me up and we went to the hospital to be with Dalton. Just Jonathan and I went down and spent the entire day with him. Was I exhausted and in tons of pain? Yes. Did it matter? Absolutely not. I got to be by my son's side the whole day and it was magical, we even got to read him some Bible stories.. We are still unable to hold him and it will probably be that way for another week because of certain IV lines. We met with all the different doctors and geneticists at the hospital. Learning a whole new staff was hard because we were so used to all of our Northside doctors. Luckily, everyone has been wonderful and very helpful. I even got to change a diaper. I was so excited! We just tried to let him rest as much as possible because he does not like having tests done and that is really all they have been doing to him. He is on room oxygen which is a huge accomplishment! They are feeding him lipids (fats) and sugar water to keep his belly full. They will attempt tube feedings when his surgery is over. Today was kind of the same deal. We went to the hospital to sit in on his rounds at 6 am. Then we did more sitting by his bed, and honestly I do not want to be anywhere else. The thing that is making this all so difficult is that I do not feel 100% and I wish I did. I am still on lots of medicines and very uncomfortable and I pray that God starts to heal me so I can give Dalton my all.
Today something awesome did happen. He was having a little tantrum (apparently he likes to do that when he gets unswaddled) .The nurse was soothing him as I came back to his pod, he heard my voice and stopped! He was completely wide awake, looking around, checking everything out. It was the first time we had seen him keep his eyes open for a period of time. I called Jonathan so fast and he came running up from the cafeteria.
Jonathan and I were talking about how with all the craziness of trying to be with him as much as possible and gather all the information we can from the Doctors we haven't had as much time as we would like to pray. I know you can pray anywhere, anytime but our minds have just been so full of worry with all that has been going on around us. That's why God put a friend like Kalee into my life. She started a prayer vigil to be with Dalton from midnight tonight until midnight tomorrow. Every 15 minutes someone will be praying for our little miracle baby. Some of the times to sign up to pray have even doubled and tripled. We are so moved by the outpouring of love from everyone. It is what is keeping us going and giving us the strength to move up that mountain. Our son will be covered in prayers and mostly from people we don't even know! It is amazing how God is using Dalton to bring so many people to their knees before Him. He is defying the odds and tomorrow morning at 7:00 a.m. he will continue to do so.
Thank you so much! God bless you all.