What I’m thankful for
or “I know what I did this summer”
My son Gavin was born on May 16th, 2007 @ 11:28AM. He was 6 pounds, 12 ounces. He was also very sick. We had no idea of what we were about to face when he arrived. The following is a recounting of my communications to my friends outlining the events as they unfolded.
June 1, 2007
I thought everyone deserved an update.
Gavin is quite sick and is has been in the NICU (neonatal intensive care unit) since he was born on the 16th. He was originally admitted because of some breathing problems, but the situation has magnified quite a bit in the past two weeks. They continue to run a battery of tests on him. There is A LOT going on, but here are the most pressing issues:
Gavin had been diagnosed with severe hydronephrosis in utero. Basically, he had enlarged kidneys. They’ve done two studies on his kidneys and determined there is a blockage on both sides where the uraters meets the kidneys, with possible blockages where the uraters meet the bladder. This requires prompt surgery. He will be transfered on Monday or Tuesday from Christiana Care to A.I. Dupont Children’s Hospital for additional testing and surgery.
Gavin has a large VSD (ventricular septal defect) or a hole in the wall of his heart. VSDs are actually quite common and most people don’t know they have it. Gavin’s, however, is 6mm: larger than the diameter of his aorta. Consequently, he is having trouble breathing and therefore trouble eating. He is currently on two heart medications, but this issue will also require surgery. Unfortunately, since he is a little guy, the only option is open heart surgery. Cardiology and urology are still discussing the order in which the surgeries will take place.
The good news is that while no surgery is without risk, the neonatologists tell us the success rate for both procedures is around 95%, but the real test for Gavin will be in recovery. Heather and I will, of course, feel more confident when we hear that directly from a surgeon, but it’s what we have so far.
As I said, there is much more than just that, but that pretty well summarizes our immediate concerns. All that I ask is to think positive thoughts for the health of my son.
June 14, 2007
First of all, sincerest thanks to everyone for all the support and well-wishes we’ve been getting. All of your thoughts for Gavin are GREATLY appreciated.
Good news first ( I have 2 actually). Gavin’s last echocardiogram revealed that the supporting wall of the valve between his atrium and ventricle in his heart is partially restricting his VSD. The short version is that while surgery is by no means our of the picture, it is no longer a foregone conclusion. The cardiologist feels the heart medications are doing their job and believes it is a possibility the heart will heal itself (he may always have a small hole, but as long as it does not impact him they will leave it alone).
Second bit of good news. After almost 3 weeks of being fed through a tube in his nose, Gavin can and remembers how to eat. The concern was that he had some physical issue that prevented him or discouraged him from eating normally. The end result solution could have been a peg tube directly into his stomach (i think?). As of Sunday night, however, he has taken all of his bottles by mouth and he no longer has a tube in his nose. It still takes him a while to eat, but that he is able to is very positive.
Now for the not so good news. Gavin will be going into surgery to his kidneys/uraters at around 1PM Thursday (maybe earlier). The urologists are still unclear about the exact nature and location of the problem(s). But since both kidneys are affected, they feel they must intervene. The will be performing one last test before surgery to try to determine the best course of action: they will inject dye directly into his kidney, take X-rays to see what happens, and figure out how they will operate. Whatever the case, they will not be able to fix the issue at this time. If all goes well, this will be a temporary fix for a year so that he doesn’t go into kidney failure. Then they will start looking into doing something more permanent. At any rate, today is the first big hurtle of his young life. The surgeons and anesthesiologists are all confident in Gavin’s ability to tolerate surgery; we are just nervous because 1) it’s surgery and 2) we wish they knew what they were cutting him open to fix.
There is always more, but that’s the important stuff for now.
July 13, 2007
Thanks again to everyone’s messages of support.
Unfortunately, we rebounded back to the hospital in less than a week. Gavin started having more and more problems eating, and then started vomiting his bottles, so they admitted him two Fridays ago. His heart was larger and the pressures in his heart were worse. And even though he was gaining decent weight, they believed his VSD would steal energy away from the growth and development of his other organs, so the consensus was to operate.
Gavin went into heart surgery at 10:30AM on Monday. As everyone knows, any surgery has an inherent risk, but this time was, without a doubt, much more difficult handing him over at the operating room door. This round of surgery was comparatively fast to the previous one: only 2 hours, half of which was spent getting him onto bypass and (essentially) stopping his heart. Heather and I were told that one of the signs of a successful surgery would be if they closed his chest, otherwise they would leave him open to have continued and direct access to the heart. By the time we got our second update from surgery, we were already told his sternum was wired shut and he was moving to ICU.
I expected we would be in the ICU for a few days. He was there for slightly over 24 hours. Gavin was moved to a stepdown unit, where again I expected he would be for a few days. Less than a day later, he was back in his room. The following day (Thursday) he had already started taking his bottles orally again. Gavin has done so well with recovery, there is talk of sending us home next week. So Gavin has basically gone from having his heart exposed to demanding he be fed promptly… within 3 days. He’s a helluva lot tougher than I am, that’s for sure.
His murmur is pretty much gone. The hole that was 6mm now registers as 1mm, which will hopefully close all the way. His breathing is much smoother and less labored. We are restricted in how we hold him (ex. no over the shoulder, no belly time) but his sternum should be healed within 4-6 weeks. He is certainly having some pain issues and a few other minor things we are keeping our eye on, but overall he is doing excellent.
I hope everyone is well.
We’ve had many more challenges since Gavin came home, and he has mostly risen to the occasion. We’ve also seen Gavin’s floor-mates struggle and, in one case, lose their battle. I’m not claiming to not be worried: As any parent will tell you, its hard not to worry about the future for your children. What I am is genuinely appreciative for everything that I have, including the charm of one dashing, toothless smile.
Happy Thanksgiving everyone.
