The defect is called coarctation of the aorta, which is a small narrowing in the aorta. In terms of heart defects, it is a relatively minor one, but no heart surgery is minor. The doctor assured me that he would recover fully, and go on to have a normal life. I sobbed the whole way home.
This was on October 14. The surgery was scheduled for October 25. The eleven days in between were tough, although the more I talked to people about the surgery and the situation, the more success stories I heard, the better I felt. I still didn't feel good about the situation, but hearing those stories helped ease the worry a bit. It also helped that I have such a supportive family (my mom, mother-in-law, and Ben's aunt Sally were indispensable throughout this ordeal) and a wonderful group of friends - all of the emails, texts, and phone calls really helped. And the food.
The morning of the surgery was awful. I barely slept the night before. While we were waiting for the surgeon, I had a strong urge to just leave the hospital. The nurse warned me that the hardest part would be when they took Christopher away. She was right. I was holding him in my arms, and when they reached for him I almost didn't let him go.
While we were waiting, we received updates from the operating room. Everything was going fine. I tried hard to distract myself, to not think about the fact that my baby was lying on an operating table while a surgeon repaired his heart. Ben and I talked about home improvement projects. The procedure itself only took about 15 minutes, but it was about 3 hours from the time they took Christopher away to the time the surgeon came to see us in the waiting room. When he walked into the room, I was immediately looking at his face, trying to read his body language, irrationally thinking he was going to deliver bad news. In fact, it was the opposite: he was thrilled with how the procedure went. He was confident that Christopher would be completely fine. I was incredibly relieved.
Then, we went to the ICU, and saw this:
It was so sad, seeing him laying there, tubes everywhere, machines beeping. I didn't know what to do, really. Finally, the nurse told me I could touch him. I spent some time just rubbing his head. Soon, though, his breathing tube was removed, and he started waking up. I couldn't nurse him, but he took breast milk through a bottle. That Friday night, I actually got a good night sleep thanks to the Ronald McDonald House. (The House in Children's Hospital is like a hotel.) And things just started getting better. The doctors were pleased with his recovery, and he was obviously one of the healthiest babies on the floor. (I tried not to look too closely into the other rooms - it was too heartbreaking.)
Finally, more than 30 hours after his surgery, I got to hold him.
By Saturday night, a few more of his tubes were removed, and he got comfy on the bed.
Clare was not allowed to visit her brother in the hospital (children under 5 are not allowed on the patient floors), but she did have dinner with me in the cafeteria a few times. She was always happy to see me, and always asked where her brother was. She had a great time with both of her grandmas ("Two meemaws!" she said), but she was pretty happy when Christopher and I were finally home and things were back to normal, at least for her.
Christopher was released from the hospital the Monday following his surgery. This was a very short hospital stay for a heart patient. I can't say enough about how great the staff was at Minneapolis Children's Hospital, especially the nurses. And they were pretty thrilled with Christopher, too. They kept telling me how cute he is, and one of them told me they never get them "this healthy." The next four weeks are his recovery period - we just need to watch for infection and keep an eye on the incision site. He will also be on blood pressure medication for at least another month, but will hopefully be weaned after that.
We had a follow up appointment this past Monday. He had a chest x-ray and another Echo. This time, I was nervous while waiting for the doctor to come into the room to tell me the results of his Echo.
"Everything looks great," she said. "He's perfect." We think so, too.
Oh, I'm sobbing. In my cube. At work. But whatever. You guys are so brave and amazing. He IS perfect. I'm so happy he's doing well.
ReplyDeleteI'm blinking back tears, too. What an emotional roller coaster ride!!! I can only imagine what a wreck you were those 11 days between hearing the news and the morning of Christopher's surgery. I bet the worrying was all-consuming! After having a scare when I was pregnant with Ben, I can relate to the fact that "Everything looks fine" are three of the most beautiful words in the English language. *And breathe* Big hugs to your family!! I'm looking forward to meeting your little (big?) boy in a few weeks!! xo
ReplyDeleteOh dammit. Bawling over here. I even knew the good outcome and still sobbed! He is so strong and gorgeous. Upward from here!
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