Monday's Memory 11

Totally missed last Monday…Everyone but Noah had the stomach flu last week, AND everyone but me had a cold. Good times!!! It was the first time Matthew had to use the vest and nebulizers in 8 months and he got a puffy face, which also has not happened for several years. It’s gone now though and all is well. Isaac got a little break from his insulin shots, only needing 1 a day instead of 4 a day for a week. Now it’s back in full swing but he is so good about it. I’ll say, it’s time for your blood test. Most of the time he’ll climb up on the stool and get everything out and ready. Every once in a while he’ll say, I don’t like it!…but that’s it…he does it anyway! The hard parts are having to wait to eat and watching everyone else have a treat when he can’t. He’s been trying to say “diabetes” and he’ll look through a book and say, “it says NO peanuts!”

On to Monday’s memory! This part of Matthew’s life is where things get confusing for me. Surgeries start to blend together and I just really don’t remember a whole lot. I’ll do my best not to bore you.

Coming home from the hospital with Matthew was very exciting. He thrived and grew and was just a happy baby. Everyone called him smiley. He was so mellow and calm and…well…HAPPY.

The greatest blessing was that Matthew was able to nurse. The cardiologist and nurses told me that he wouldn’t be able to do it. They said nursing is harder than the bottle and it would tire him out. I had pretty much given up the idea but Mike encouraged me to try and he did it…just fine. (Another miracle where we didn’t see all of the blessings from that until several years later. I truly believe that nursing saved his life…again. He had no immune system…we didn’t know it for years…he was the healthiest baby. It wasn’t until after he was weaned that he first got sick at 14 months of age.)

At 3 ½ months of age, Matthew had grown increasingly BLUE. He was living on 65% oxygen saturations. He underwent a cardiac catheterization to determine if he was a candidate for surgery number 2, the Glenn shunt. A portion of the aortic arch had narrowed and so a balloon angioplasty was done. It was determined that Matthew was a candidate for surgery number 2.

The Glenn shunt is actually the beginning half of the Fontan procedure, which is usually surgery number 3. For the Glenn shunt, the superior vena cava is connected to the right pulmonary artery allowing the blood from the top half of the body to bypass the heart and go directly to the lungs. The blood from the lower half of the body still goes through the heart until the Fontan procedure is complete in stage 3. This shunt allows some relief for the single working ventricle - less volume load - and better oxygen saturations.

At 4 months of age, and of course, the day before Thanksgiving, Matthew endured his 2nd heart surgery very well. We felt at great ease the whole time (this surgery only had a 3% mortality risk) and it was very uneventful, thankfully. We were only in the hospital for 8 days. There was some concern that the right pulmonary artery was too small to handle this surgery but it turned out not to be a problem.

This was the last surgery done on my children by the very talented cardiac surgeon Dr. Helseth. He was a large man…his hands were the size of Matthew’s whole body almost. We joked with him about how he could work on such little tiny hearts. He retired soon after this surgery and sadly, died of a heart attack just a year or two later. So bizarre that he spent his life saving all of these little heart babies and children and then his heart fails him in that way. Very sad.

The rest of Matthew’s first year was…NICE! We just enjoyed him. We had little things, like the circumcision and regular baby stuff to take care of but Matthew continued to thrive and grow.