Lungs/Heart:
At first, we thought the lungs were what landed Mason back in the hospital, but fortunately, the chest xray looked the same as right after surgery in December (when Mason was needing only about 1.5 L of oxygen) and he really didn't have any extra fluid on his lungs. Since coming home from the hospital on 2/27, Mason's oxygen need has continued to come down. He is now needing somewhere between 1.75 and 3 L of oxygen during the day and has been able to have it turned down to 1.0 L at night. The secret, we think, is a new medication. Mason started on a low dose antibiotic on 3/11 and has seen a steady decrease in his oxygen need ever since. While there are risks with taking an antibiotic regularly, these are far outweighed by the risk of staying on steroids for a long time. We are starting to see more effects from the steroid including some growth slowing which can really create problems with Mason's lung growth. So, in an effort to getting off of the steroid, the antibiotic will help to decrease the inflammation on Mason's lungs. So far so good. We even started weaning the steroid again yesterday. Let's hope this does the trick!
As far as the heart goes, thankfully, his heart is doing just the same as it has since summer. His additional need for oxygen hasn't put any more stress on the heart!
Eating/Weight:
Oh, I can't wait for our problems with eating to go away! This has continued to be a challenge over the last month! With the addition of the fat and oil to Mason's formula, the "dumping syndrome" symptoms have decreased. Unfortunately, the math adding up his calories was wrong and Mason grew too quickly - almost 2 lbs in 1 month! At this point, babies' growth normally slows down a bit, but Mason's sped up because of too many calories in. So, without any reserve in his breathing, he outgrew the capacity of his lungs and landed back in the hospital on Feb. 23rd. Our little guy went from "failure to thrive" in August to obesity in February. Not a good plan for one with such fragile lungs. So, he's on a diet. We've decreased his caloric intake significantly and his growth has slowed down. His height is now catching up with his weight slowly which is vital for his lung growth. Thankfully, Mason hasn't put on as much weight since the last update. With the diet he's been on, his growth has slowed. The official stats from his 1 year doctor visit: 19 lb. 3 oz (just 1/2 lb. more than last month vs. 2 lb. gain in the previous month!) and 27 inches long.
Mason in August '08
Mason in March '09
When he went back to the hospital, it took some time to figure out why the oxygen need went up so significantly. One theory was that he was again aspirating his food (slipping it into his lungs) since we had started feeding him by mouth again. Since we can't rule that out completely, we have decided to stop the oral feeding until all other variables can be controlled (i.e. not cold/flu season, oxygen stable, weight stable). When we start again, we're going to look at other options so that perhaps the food will be more palatable for him than when we started a month or so ago. We want the experience to be pleasant for him, so may need to do things a little differently.
Development:
The best news over the last month is Mason's development. Sometime in Jan/Feb., Mason decided that he really didn't want to put weight on his legs. With some perseverance on Daddy and Mommy's part, his is down happy to stand holding on to us whenever he gets the chance. He's still not crawling, and may never do so, but he is much more able to stand than last month. We are so happy to see some progress. Now we just need to keep the momentum and encourage less and less support with standing. Maybe in the next couple of months, he'll progress to standing on his own or maybe even cruising around furniture!! I'm sure I'll regret this statement, but I can't wait for that to happen!
We hope this finds everyone doing well. Thank you for all of your support and prayers!
Love, Christi, Bill, and Mason
2 comments:
From "failure to thrive to obese" You just can't win. That's what Joey was called however, 4 weeks in the hospital took care of the obese part. I want to see birthday party pictures. I regret that we couldn't make it. Hopefully next year when all are stronger and healthier. That day will come, I know it!
Happy belated Birthday sweet Mason - We can't wait to see your pictures as well and want you to know that you and your Mom & Dad are in our prayers. We just can't wait to get you and Ava together. With love Rob, Linda, & Ava
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