Nolan was born on January 13, 2016. On January 18, he had his first surgery of the three-stage procedure that will help his heart function a little better. No mother should have to watch her 5 day old wheeled off into surgery.
Johnny and I woke up semi-early and got to the hospital by 8:30 on the 18th. We actually made it in time for rounds that morning! Dr. Tam was there and told us that he’d be taken around 1 and surgery would start around 3. After rounds we met some of the doctors that would be taking care of Nolan in the CICU. Then Dr. Tam’s nurse practitioner came in so we could sign some consent forms. We had to agree to the surgery and sign acknowledging that he will be given blood. Then the anesthesiologist came in so we could sign her consent forms. She also walked us through what would happen before surgery started. I made the mistake of asking her how common it was for babies to have bad reactions to anesthesia. She then went into this long talk of how, basically, he was more likely to die from the surgery itself than have a bad reaction to anesthesia… I didn’t want to cry in front of all the doctors so I tried to hold it together. Trust me, the thought of my child not coming out alive from surgery crossed my mind.
After all of that my mom and friend hung out with me and Johnny for a little while. We decided to go grab lunch around 11:30 so that we could be back in time to hold Nolan one last time before he was taken to surgery. We got back around 12:30 and the nurses were there to take him. We did not get a chance to hold him. 😦 The nurses got everything ready and then had to wait for me while I cried! Johnny, my mom, and my friend gave me a hug and prayed for Nolan and the surgery. Then we all walked with Nolan to the doors right outside the OR. We told Nolan goodbye and gave him some kisses and he was gone. Cue some more tears. My mom tried to tell me that it would be okay and the God has a plan. For the first time I said out loud, “What if God’s plans aren’t my plans?” It’s something I had thought a lot about. God may have a plan, but what if it’s not what I want.
After I had some time to calm down we walked back to the NICU to get all of our stuff and go wait in the surgery waiting room. That’s where we’d get phone calls to update us on how the surgery was going. They would call when they started and then every hour after that. We didn’t have to wait in the waiting room, but I think it was just easier to be there.
While we were waiting for the phone call to let us know surgery had started another large family came in the waiting room. (Now, we were already breaking the rules because you’re only supposed to have 4 guests plus parents in the waiting room. But we had a lot of people there to support us and Nolan, so those rules are just going to have to get over it!) They were waiting for their child to get out of his surgery. We started talking to them and found out that their little boy was having his Glenn. He doesn’t have HLHS. He has issues with the right side of his heart but the surgeries are the same. After their little boy was wheeled out the parents came in to talk to Johnny and I. They let us know the truth about what we were going into. They showed us pictures of their little boy so we could be prepared for what Nolan would look like. They were so kind! (If you want to follow their little boys journey you can find their Facebook page here. Or you can go to their blog here.)
At 4:06 we finally got the call that Nolan’s surgery had started. We hung out in the waiting room, played games, and just tried to take our minds off of what was going on. Then every hour we’d all get quiet and wait for the phone call to tell us everything was going smoothly. Anytime they were a minute late calling us I thought something went wrong, but then the phone would ring. At 5:06 he went on bypass. At 6:06 everything was still going good. At 7:06 they started rewarming the blood to take him off bypass. At 8:06 they were starting to “close”. At 8:56 we were all sitting in the room waiting for the call to let us know they were bringing him out. Then Johnny and I recognized one of the nurses and realized that Nolan was right outside of the waiting room. We jumped up to go see him. He looked so much better than we thought he would. We were able to give him a kiss and he was off to the CICU. Dr. Tam came out to let us know that everything went well and then he told us to wait in the CI waiting room and they’d let us know when we could go back to see him.
We waited for another hour and a half before we were able to go back to his room. When we went back to his room the nurse gave us some information and the number to call to check on him. It was extremely hard to see him. He was still sedated, had a breathing tube in, and his chest was open. When we walked out of the CI I started crying again. I just wanted him to be okay. I didn’t want any of this to be happening. One nice thing: the family we met in the waiting room was in the room across from ours.
Each day, he would look a little less swollen. We would see less and less drainage in his chest tube which is a great sign! By Thursday they were ready to close his chest. Thinking about it now it seems like so long ago, but it was only a week ago! When they closed his chest they shut down the unit so we couldn’t go in until he was closed. I was sitting in the waiting room and Johnny had just left to go to work. Dr. Lanier came out, sat beside me, and told me that Nolan did not handle chest closure well. He said that they might have to open him back up again. He then realized Johnny wasn’t with me and when I told him Johnny had just left for work he felt really bad. I, of course, started crying and called Johnny to let him know. I told him not to leave work and I’d keep him updated. I called my mom and asked her to come up there with me. Then, the mother of the little boy Rhett came out, gave me a hug, and told me to come sit with her and her husband. They had been talking to a family whose little girl was closed and then had to be reopened. (I wish no family had to go through this, but I’m thankful for the families who understand. We are apart of a special, crappy club!)
Shortly after my mom got to the hospital we were allowed back into the unit. I washed my hands quickly and came back to Nolan’s room. When we came in he seemed to be doing okay. I didn’t want to get my hopes up too high that they wouldn’t have to reopen but I felt fairly optimistic. We are now calling that episode his first temper tantrum! Ever since that day he’s done pretty good.
On Friday I came in and he had a couple less IVs and NO CATHETER! Dr. Davis told us that she felt pretty optimistic that he could have his breathing tube out Sunday. When we came in Saturday morning they told us that his chest tube, tummy tube, and hip IVs, AND breathing tube were coming out! It was so nice seeing him with less stuff on him. We were also able to kiss him better because there wasn’t a huge tube in our way. They also started feeding him 3 ml and hour through a feeding tube. On Sunday he was up to 5 ml an hour. On Monday they bumped him up to 8 ml. Tuesday they were ready to start bottle feeding so speech therapy came to work with him. Thursday he got his wound vac off so we were able to see his awesome scar. He also got his ART line out which left him with only one IV!
He’s still on oxygen but we’re slowly weaning him off of that. He has his PICC line in but we’re hoping that will be removed in the next couple of days. He’s taking more and more of his bottle each feed. He’s making a ton of progress! The doctors are pretty impressed with him. He’s had quite a few steps forward lately. It seemed like he was taking one step forward, two steps back. It’s been nice not to have many steps back lately. The feeding is frustrating because sometimes he’ll do really well and then he’ll decide he’s only going to take 7 ml.
This is a rough process. There are going to be good days and bad days. I hope for more good than bad! I wish none of this were happening and there are many times I wonder why God thought we could handle this. The other day, though, I briefly felt a sense of normalcy. For a second, I was sitting next to Nolan’s bed and thought all parents have to sit next to their child in the hospital hooked up to billions of lines and wires. Then I remembered that wasn’t the case. It’s not normal for everyone, but it is our normal. And as much as I HATE it and wish it were not the case, I know that God has a plan (hopefully somewhat similar to mine) and that with God’s help we can handle this. He will be there for us on our good days and He will be there on the bad days. He is in control and we have to hope and trust in that.