Since we’ve been home with Logan, life has been rather ordinary – which is a fabulous thing by the way! We have been meeting with both physical and occupational therapists 4 days a week and recently down to 2 days a week. Thus far Logan is showing absolutely no delays and is even a little ahead of the curve when compared to a typical child. We couldn’t be more thrilled! When they say early intervention, they really mean early. We actually had therapists coming over from the day he got home. The more we can help him now, the better!
We’ve also had our standard monthly well baby visits with our pediatrician as well as our first visit to the Down syndrome clinic at St. Louis Children’s Hospital (SLCH). So far so good! He’s small, but growing well and not showing any sings of distress. He even passed his one hour hearing test, so things are looking good.
We’ve also been meeting with the cardiologist on a monthly basis to watch over his heart. At our first appointment we were really surprised to find out that the PDA had indeed closed and it didn’t narrow his aorta any more than it already had been and they no longer considered that a problem! His aorta is a touch more narrow than it should be, but it’s not a dangerous thing and he should be just fine.
I know that I should probably post more on that, but events changed a little bit today and I wanted to get you up to speed. We had been hoping that the remaining two holes (the ASD and VSD) would close on their own as he grew. As a newborn the pressure in his lungs and heart were about equal, which is normal. Once you reach about 2-3 months of age those pressures start to change. We had an echo today that confirmed that and unfortunately it didn’t show the exact results that we wanted to see.
Right now, the pressure in the right side of Logan’s heart is a little high which is causing the pressure in his lungs to elevate a bit. It’s fine for now. He’s not in heart failure and isn’t in any real danger, but if we don’t fix it, there could be some long term damage that we won’t be able to repair.
What’s the fix? Open heart surgery to repair the ASD and VSD. Right. They are going to take my little 9 lb (hopefully 10 or 11 lbs by then) baby, crack his chest open and sew up the holes in his tiny little heart. Whew.
The good news is that he is growing well and is considered big enough to safely handle the surgery and once he’s had it it’s done. The holes will be fixed and they should never be a problem again. He will continue to grow and thrive and become a happy and healthy toddler before we know it.
The bad news is, they are cracking my baby’s chest open. Small baby. Big hole. Nervous mommy.
He should be just fine though. There’s about a 95-97% success rate and there are few complications to worry about. He is also having surgery in the cardiac unit that is ranked #13th in the country, which really puts us at ease.
No surgery date has been set quite yet, but we are expecting it to be some time in early to mid July. Please keep our little man in your thoughts and prayers while we prepare for our next mini vacation to St. Louis. We are grateful that at least this time around we can plan ahead to find a place to stay and find a way to keep our family together in the same city so that we aren’t all so far apart again.