Friday, June 13, 2014

First Surgery

Micah had his first open heart surgery when he was 12 days old, on June 11th.

In a nutshell, his surgery went fairly well and he's doing solid since then.  He hasn't had any crisis moments since the surgery and he seems to be progressing at a good pace.

We had the most renowned doctor in the building on Micah's case. Dr. Jonas explained the procedure and the risks.  Micah's surgery was on the far end of the spectrum for Tetralogy of Fallot patients.  Putting a donated conduit (and valve) in Micah's right ventricle to connect to his two little pulmonary arteries had a success rate of about 90%.  Laura and I like when doctors are straight up with the negative information.  A few doctors (usually the genetic ones) will try to slowly ease the information on you, with worried looks and too many pauses for "do you have any questions?"  Just give it to us straight.  Laura and I are too far gone to get worked up about every piece of bad news.  There's a saying "you can tell the size of a man by the size of the things that make him mad."  Maybe it just feels belittling when someone is assuming that we're going to go for an emotional spin if they give us news about Micah.

Dr. Jonas debriefed us saying that Micah did well and that he found that Micah has only one coronary artery.  Coronary arteries (usually there are two) are small enough to not show up in the echo and cath lab images.  When he was telling us this information, it reminded me of a movie scene where someone imparts secret information, saying, "This will be well documented in the reports, but you must remember this information - as it will be critical to all of his future surgeries."  In order to keep the 1 coronary artery in tact, he placed the conduit lower in Micah's right ventricle.  I'm pretty sure that if something had damaged his coronary artery, he would have had a heart attack.  Due to some swelling, they left his chest open after surgery.  The image of Micah after his surgery - with tubes, swelling, pale and seeing his little heart thumping - is definitely burned into memory.

Prior to the surgery, we had a lot of ups and downs with is oxygen (and even his heart rate at one point). Because of this, his surgery was scheduled early.  We found out that there aren't a lot of benefits to having the surgery later (say, 1 month old) instead of earlier.  One of the doctors confessed that it's often most helpful to the parents, so that they aren't thrown right into worrying about their baby during surgery.  We were also told that the day after surgery and the following days (or even weeks/months) could be very rocky.  That saying "things will get much worse before they get better" keeps popping into my head.  But, we've been with Micah each day, and even though it's terrible to see him motionless, puffy, pale, connected to more tubes, his blood flowing through tubes and his chest open - he seems to be doing really well.  We're in an all out wait mode.  Just happy to see each day go by as he keeps progressing.

The goal for now is to see his swelling go down and to close his chest tomorrow morning.

Even if we may seem tough and whatever, I know I've had a mental attitude of "don't give up" and "hang in there." At times, I've strove to turn the corner and be more optimistic, enthusiastic and joyful - because I know we need it, as a family and in general.  It's very easy to be 100% present with Dylan - play with him, talk in his nonsense way about trucks, balls and water, read to him and get him to eat things other than muffins - but it's a lot harder with everyone else.  Laura and I have our own ebb and flow of emotions, but we are supportive and understanding of each other.  As crazy as all of this is, every day with Laura in my life is wonderful.

I haven't held Micah in like a week. The last time I saw his eyes open, I was on pins and needles that his oxygen would sink.  He's basically in a coma and doesn't look like himself.  I joking posted on facebook about how I love Micah's cry and how annoying other babies' cries are.  Now I don't mind their cries at all. It reminds me of how much I would love to hear Micah's voice.