Grandma holds her little William.
The weekend before the surgery we spent in the step-down unit. William was closely monitored, and I would watch helplessly as his breathing would jump from 66 to 88, to 72 and even to 108, then 82, 55 and sometimes drop to 30. With the nurses there to feed William at night, I had my first long stretch of sleep in over 6 weeks.
Journal entry...September 25~ 8:30am... They made the first incision 15 minutes ago. I haven't figured out what's more difficult... the waiting now, or watching William's respiration these last several days.
8:40am... The nurse just told us that William is now on the bypass machine. William was more tired than usual yesterday. It's been quite obvious that we made the right decision to stay here at the hospital over the weekend.
9:35am... Off bypass. They patched the hole, and didn't have to go back and put a little hole in it. So,... good news! Hopefully, we'll get to talk to the surgeon soon.
10:20am... We're up in the CICU waiting area. The surgeon had come out around 10 to talk to us~ everything went well. The pressures were good after they took William off of bypass. We got to see William around 11:30. His color looked really good. I didn't realize how ashen he had been looking the last few weeks. Robert and I looked through the medical paperwork and saw a summary from the surgeon to the cardiologist. It said that William does have mild to moderate Hypoplastic Left Heart Syndrome. *Thankfully, it is mild enough to not require any treatment to date.
September 26~ They had to hook an external pacemaker up to William's heart last night. While he was sedated, his heart rate dropped to 90; they wanted it to be around 140. Gradually during the day, they began removing various lines and tubes. Started with the leads, then the chest tubes, followed by the stomach tube and the respirator. After he was off the respiratory, they shut off the pacemaker. William seemed so alert and stronger. He sucked so voraciously on his pacifier, the nurse gave him a bottle of breastmilk. He took 43cc's of it in record time. I was so tired, yet at the same time, I was screaming with joy inside. All the while I still held the fear that there would be an unexpected turn of events.
On the 29th, he was discharged. After that, the visiting nurse came by a few times a week to weigh him. He was steadily gaining! Within 3 weeks, the right side of his heart had gone back to regular size. We met with our Early intervention team and set up a schedule. By Thanksgiving, William weighed 9lbs6oz... he was finally ON the growth chart.
Despite a rough beginning, William these days certainly doesn't seem like a child with heart defects. He still sees his cardiologist every 18 months to be sure everything is functioning as it should. He is in second grade this year, loves math and reading, and 2 weeks ago, just for fun, he learned all the planets in our solar system... in order!!! He loves to sing... it may be off-key most of the time, but he loves to sing! He can recite movie dialogs by heart. He says things that make us laugh, like "What do you think you're doing?" He makes us cry with joy when he says, out of the blue, "I love you".
After William was born, I found the quote by Einstein that is in my blog header. Words have never rung so clearly for me than those. Everything truly is a miracle.
Happy Heart Day William!