Archive for January, 2006
Tuesday, January 31st, 2006
It’s been quite a while since the last update! Kevin is growing to be a pretty big boy now, at about 10 1/2 pounds. He had another visit with his pediatrician on the 20th which went well. Nothing unusual to report and he thought Kevin was looking great. He got some of the standard immunizations done which he didn’t enjoy at all, but otherwise he does great with doctor visits. He’s also down to just 3 meds now.
We had a followup visit with the ear, nose, and throat doctors in Iowa City today. They were quite impressed with his voice and said he sounded almost as loud as a typical baby. They were also impressed to hear that he’s been eating straight formula (not thickened with rice) for several weeks without any problems. They stuck the small tube with the camera at the end down his nose to look at his vocal chords and see if the left one was working any better. Unfortunately, it doesn’t look like it is. We’re only 2 months out from surgery, though, and they said that this is still perfectly normal. We’re going to see them again in 4 months and check for any changes. They said if he’s 10-12 months old and the vocal chord doesn’t work better, then they would think there is permanent damage. But right now is still too early to tell. The good news, though, is that his other vocal chord seems to be compensating perfectly, which is why he can cry so loud and eat just fine. Normally the two vocal chords meet each other in the middle to make a seal, but in his case the right one is going past the middle to close up against to where the left one is. It’s amazing how the body can make up for a paralyzed vocal chord and he can continue to develop normally. We hope that his left one recovers, of course, but even if it doesn’t it doesn’t look like it will cause any problems. Like the doctors said, he just won’t be singing in any rock bands!
Kevin’s sleep schedule has settled in pretty well and he’s still a good sleeper. He’ll take a bottle around 9:00 at night, then sleep until 2-3am, get up for another bottle, then sleep in until 6-7. He remains pretty active during most of the day and fights it when he gets tired. He loves his swing and his play mat and will stare at the little toys for quite a while without getting too bored. He smiles really big all the time and is usually in a good mood. Overall, he’s been a pretty ‘easy’ baby compared to many. He doesn’t cry for hours or anything!
Our next visit with the cardiologist is next tuesday. He will have another x-ray to check on fluid since he’s down to just the one diuretic once a day. We don’t expect any surprises with this visit either!
Tuesday, January 17th, 2006
Kevin had his followup visit with the cardiologist today. He’s gained more weight - up to 4.29 kb (9 lbs 7.25 oz). This still only puts him at the 5th percentile, though! His length is right around the same percentile. He seems so big and chunky to us now, but he’s still got a ways to go after his late start in growing.
Last visit to the cardiologist, she took him off one of his medicines (Spironolactone, a weak diuretic). So this time they wanted to make sure his potassium was okay and that he wasn’t retaining any fluid. His x-ray looked good and his potassium levels were fine, so she took him off his potassium chloride medicine and reduced his lasix to once a day. So now he’s down to only 4 medicines - 2 twice a day and 2 once a day. Continued reduction in meds certainly makes it easier on us, and we’re so glad he’s progressing enough that he doesn’t need them.
He continues to be a very well-tempered little guy. He’s rarely mad and screaming, and when it is it’s usually because he’s hungry! He loves being held, of course, and we indulge him as much as possible. He’s not a big fan of his swings yet, either. He mostly likes to stare at lights, walk around, and be held. He’s holding his head up pretty well and looking around and is becoming a little more aware of his arms, I think. He is spending a little more time awake during the day and sleeping pretty well at night, so we’re all getting into a bit more of a groove.
Thursday, January 12th, 2006
Kevin has made great progress in the last week. His NG tube hasn’t been in since last week when we took it out, and he’s eating like a champ. It’s so much easier and more convenient to feed him without the tube. He eats quickly and takes his full feeds with no problems now. Based on his weight at the last visit, they upped the volume of food that he should be getting in a day and he’s taking that much fine. He’s on straight high-calorie formula now and we don’t even need to mix it with rice to thicken it up.
The nurse came today and weighed him, and he was up to 4.03kg! That’s 8 pounds 14 ounces - almost a full pound gained since last week. We’re so happy that he’s gaining so well now. He still has a long way to go to “catch up” to his ideal weight at this age. He’s almost 10 weeks old now!
He continues to be a very content and happy baby. He’s always skeptical of things, and has that look on his face like “what do you think you’re going to do to me?” He’s sleeping well at night, too. We usually let him sleep about 4-5 hours between feeds at night, but then wake him up to eat. It’s a lot better than every 3 hours and dealing with the NG tube!
We see the cardiologist again on tuesday to check on how things are going after coming off the one medicine and to look at his chest x-ray. He then needs more labwork done the following week to make sure that he didn’t aquire any illnesses during all his blood transfusions in the hospital. On the 30th, we’re back to Iowa City to check in with the ear, nose, and throat doctors to check on his swallowing. Seems like a lot, but really it’s just a lot of checking in on him to make sure everything continues to go well.
Overall, things are steadily improving and life is starting to get back to normal. It almost feels like we have a ‘normal’ baby with no health problems now! But we always know in the back of our minds that he is a special case and we need to always watch him very carefully.
Thursday, January 5th, 2006
Kevin continues to do well at home. He’s slowly gaining weight, although not as fast as they would probably like him to - he’s about an ounce shy of 8 pounds now. We continue to struggle with his eating and spitting up. We took out his NG tube today because we need to switch nostrils weekly, and we haven’t put it back in yet because for the last two days he’s been taking his bottle very well.
We saw the pediatric cardiologist today and everything looks stable. There were no new signs for concern or anything, and she said his color is good and he just looks good all around. his x-ray looked a lot better to us since the last one we had in Iowa City, but she hadn’t seen that one so she couldn’t give her opinion on whether it was improved. She took him off one of his medicines (down to 5 of them twice a day now!) and we will come back in 10 days to have labwork done to make sure he’s still fine without it. Giving him his medicines really isn’t that much work, but it will be nice to slowly reduce the amount of ‘extra’ things we need to deal with.
His vocal chord seems to have recovered quite a bit, since he is now quite loud when he cries. He’s not as loud as a typical baby, but we can still easily hear him from across the house. He’s content most of the time, but when he has gas or when he doesn’t want his medicines, he sure lets us know. Most of the time he just wants to be held, suck on his binky, stare at the lights, or play on his ‘exercise mat’.