Tuesday, May 2nd, 2006
It’s been quite a while since our last update! Kevin has been doing well and enjoying the nice weather. He has rolled over a few more times since the last post, but he just doesn’t seem to want to be on his belly. He’s getting to taste a lot of new flavors with his baby food and seems to like it. For him, though, everything is a big game and hilarious! It’s hard to get him to sit still for anything, because he’s always giggling and cooing and finding something funny. It’s like he has a little sense of humor already. He’s grabbing at things more and is starting to “play” with his toys. He mostly just shakes them around and plays with the things on his exersaucer, which he also enjoys a lot these days.
He had a visit to the cardiologist again today. He’s now 14 1/2 pounds and over 25 inches long. He’s still not a champion eater, but apparently he’s eating enough for his body to keep growing at a good pace. He’s small for his age, which we realize even more now that we take him out to places and see other babies! Everything looks stable as far as his heart condition goes. We are scheduled for another echo in June, and this time they will sedate him because he is way too wiggly to stay still for 45 minutes.
Last week we did our first pacemaker check by telephone. We have a small device that looks like a modem. We connect two small bracelet-like straps to his forearms which plug into the device, we dial in, and put the phone on top of it. It transmits signals to them which somehow tell them the condition of the pacemaker and how well it is working. We go up to Iowa City again in June for a more in-depth pacemaker check, but it seems to be doing just fine. We also go up to Iowa City in June to get his vocal chords checked again. June will be a busy month!
Sorry there are no new pictures up yet. We have been very neglectful in taking new pictures, so we don’t have any good ones to put up yet. We will snap some tomorrow and put them up asap!
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Sunday, April 9th, 2006
Kevin is now 5 months old! He started rolling over a couple of weeks ago but isn’t quite an expert at it yet. He gets very frustrated being on his tummy and sometimes figures out how to roll over, but sometimes just gets mad. Just a few days ago he started getting up on his knees, so maybe we’ll have an early crawler? He started eating cereal this week but most of it gets on his face, of course. He’s also laughing out loud more and finding everything funny. One of his favorite things to do is to jump in his jumper. He jumps like a wild man and thinks it’s hilarious. We took this video (4mb) of him going nuts. He’s finally started to take some interest in the baby einstein videos he has also, but he doesn’t usually have enough interest to make it through a whole video.
With the help of Joanna, Brent, Emily, and Kristel we made a bunch of blankets to take back to the PICU in Iowa City when we were there for our last appointment. They appreciated them a lot and were excited to get new blankets to put on the beds that night. We will continue to do things for the children’s hospital in appreciation for the care they gave Kevin and for the families who are currently experiencing some of the same difficulties that we did.
About 2 weeks ago everyone in our family got sick, including Kevin. He had a cold and cough and was a miserable little boy for a while. When he didn’t get better for over a week, we took him to the pediatrician just to make sure that there was no concern about his heart or infection. He said everything looked fine and he just had a normal run of sickness, so that was a relief. He’s still not totally over his cough, but now he’s eating better and acting more like himself so things are starting to return to normal.
At his last weigh-in, he was 13 pounds 8 ounces and 25 inches long. His weight didn’t increase as much between visits because he was sick and just not eating as well as normal. But he didn’t lose any weight, and that’s the important thing. The doctors seemed fine with him just gaining a little, considering that he was sick.
Last tuesday we had an appointment in Iowa City with the dermatologists to check on the spots he has on his back and a few other places. The dermatologist here didn’t know exactly what they were so he referred us to Iowa City - and they immediately knew exactly what it was. They identified it as something called Urticaria Pigmentosa, which is a form of Mastocytosis. Basically this means mast skin cells accumulate and form spots. These same cells release histamine which makes them red and possibly itchy. They can also blister over when irritated. This is kind of a rare thing, with only about 200,000 cases in the United States. It’s unrelated to his heart conditions and isn’t tied to any other syndromes or anything. It looks like he just got another dose of bad luck with getting this too. In infants and children, the spots usually disappear by early adolescence and don’t leave any scars. Luckily most of them are on his back with just a few small spots on his face which we hope don’t get any worse. He has enough to deal with! They shouldn’t cause any medical problems, though, except for some itching which can be treated with antihistamines. So far we haven’t noticed him being irritated by it at all. Dawn was pretty upset by the news and the potential that he has one more thing to worry about in his life, but at least it’s not life-threatening and they should eventually go away. We can deal with that.
While we were at the hospital and facing a potential heart transplant, the importance of organ donation became even more clear to us. April is National Donate Life Month, and we would encourage everyone to visit DonateLife.Net to find out how to become an organ donor.
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Thursday, March 9th, 2006
Kevin is now just over 4 months old! He had his 4-month checkup today with the pediatrician, and he’s just a hair under 13 pounds and 23 3/4 inches long - that puts him up near the 25th percentile in weight and 10th percentile for length. He’s moving up! One concern that we still have is a rash on his back and on some other parts of his body. The dermatologist gave him some cream, but it didn’t do anything. We were going to wait until our June appointment in Iowa City to see the dermatologist there, but the pediatrician today suggested we make an earlier appointment just to check them out further. They may be just a reaction to one of his medications or they may be something else, they aren’t sure. They will probably do a simple biopsy of one of the bumps to check it out.
He’s still eating pretty well and spitting up much less often. He’s not to the levels of most babies his age, but he is taking 3-4 ounces at a time about 6 times a day. He sleeps very well at night, usually from 8 or 9 at night until 5 or 6 in the morning, but he doesn’t nap much during the day. He hates going to sleep and still fights it. He’s discovered his fists and likes to stare at them quite a bit. He’s also grown quit fond of the lamp in our living room. Whenever he sits in the chair with us to eat or rock, he always looks up to the lamp and gives it lots of big smiles and coos. It’s truly his first love 
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Thursday, February 23rd, 2006
Kevin’s now just over 12 pounds and growing steady. He seems to be developing at a normal pace, maybe just a little bit behind the curve. This is normal, we’ve been told, for babies who spend so much time in the hospital after they are born. He really likes to amuse himself now with batting at the toys on his playmat and kicking things. He definitely finds some things funny, but he doesn’t really laugh out loud yet. He does “coo” quite a bit more and gets quite vocal when he’s mad.
He has quite a little attitude already, too. When he takes his meds he looks at us like he’s the world’s biggest victim and he’ll spit or cough to make sure we know he doesn’t like it. When we try to give him his binky when he doesn’t want it he’ll gag and do little fake coughs and then smile like he knows we know he’s faking. We still have a daily target of food to feed him to keep him growing at a good pace - some days he takes it easily and some days it’s quite a fight to get him to eat the full amount. When he doesn’t want to eat any more, he certainly makes it known. Dawn usually has the required technique and patience to make him finish up, though. If it weren’t for her persistance, he certainly wouldn’t be gaining all the weight he is supposed to!
We’re also still charting most of what he does - how often he eats, how much, how often he spits up, pees, and poops - all tracked in an Excel spreadsheet. This allows us to over-analyze things like his food intake chart and his weight chart. It also means we know stats that most people don’t! Since he’s been home, he’s eaten almost 1,200 ounces in almost 500 bottle feedings. He’s peed about 375 times, pooped about 150 times, and spit up about 120 times. Far more detail than anyone ever wanted to know!
The visiting nurse is only coming every two weeks now. Kevin sees the dermatologist again tomorrow to check on the red bumps he’s had on his back since after we got home. He sees his regular pediatrician again in two weeks, then the cardiologist in three and a half weeks. He’s still on his meds twice a day. There are still no signs of any trouble, but we are of course always watching him closely. Issues can still pop up, and there are still lingering issues like his leaky valves so the fear of new problems is always on our minds. Also, we carefully watch his developmental progress to make sure he’s on track there. But so far there’s nothing to worry about that we know of, so we stay positive!
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Wednesday, February 8th, 2006
Kevin’s latest cardiologist visit was yesterday. He weighed in at just over 11 pounds now, which puts him at about the 15th percentile for weight. He’s still in the 5th percentile for his length (I forget his actual length). He is now three months old, and has spent more time at home than he did in the hospital! The cardiologist was happy with his weight gain. The gain in weight means his target eating volume for the day went up, and they also increased his medications to better match with his new weight. His chest x-ray didn’t look improved since last time - his lungs might look slightly wetter. This could be because he came off one of his diuretics too quickly, so they went up on his Lasix a bit more. It was nothing to be concerned about - they are just trying to adjust the medicines to be the correct dosages for him. He goes back to the cardiolgist again in 6 weeks.
He continues to be a happy baby most of the time and is becoming more alert of his surroundings. He loves to look at lights and ceiling fans. He recognizes voices and really responds to our voice and Emily’s. He’s starting to really fill out his 0-3 months clothes - he’s even out-grown a few!
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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!
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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.
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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.
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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’.
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