Happy 11 Month Birthday, Mason

Happy Belated Birthday, Aunt Valerie!

Wow! To think where we've been in 11 months is almost overwhelming, but I'll do more reflecting in next month's update.

For as uneventful as the last month has actually been, it sure seems like we've fought a lot of demons - dumping, colds, feeding, breathing, steroids, etc. We have also seen a great number of successes, too - 2 MONTHS WITHOUT A HOSPITAL VISIT!!, moving into Mason's own room, tolerating tummy time a little more, having 1 less doctor, and smiles, smiles, smiles.

Lungs/Heart:

Mason has continued to see ups and downs this month , but overall is largely unchanged from last month. We were successful at weaning the steroids a little bit (started at 1.7 mL 2x/day just before surgery and now we're at 0.9 mL 2x/day). We tried going down to 0.5, but he just couldn't maintain the same oxygen need, so we bumped him back up. It was nice to see his cheeks on 'roids deflate a little bit, but we still have a ways to go to see what Mason's cheeks are really like. We went and saw the lung doctor in early Feb. and found he was tickled pink at how well Mason is doing. He is encouraging us to decrease Mason's dependence on his medications, but knows we need to do it slowly to ensure good progress. We'll be back to see him in another month or so.

We haven't seen the heart doctor for quite some time, but have an appointment scheduled for this coming week. We don't expect any changes, just another recommendation to keep watching.

Eating:

Eating has really been the bane of our existence over the last month. When we made the full switch from milk with formula to just formula, Mason's eating became a disaster and he was diagnosed with "dumping syndrome" in which his stomach thinks that food is sugar and empties into the intestine before processing it - results in really high heart rates, intense sweating, and extreme fussiness. Thankfully, after some quick work with his GI doctor, we were able to add some oil and/or fat to the formula and the eating has improved (though still not easy).

We are up to just over 3 ounces every 3-4 hours during the day (seems to be Mason's limit for now) and are trying to see what happens if we don't feed him as much or any overnight. Babies don't normally eat all night long, right? Getting enough calories in Mason without overloading his fluids has always been the challenge, but with some trial and error, we're figuring out the right balance. With the extra fat/oil and extra formula added to his feedings, he is getting more calories per feeding than is "normal." Because of this, he doesn't need to eat as much as another baby would, and thankfully, it gives us a little wiggle room on how and when to feed him.

The big news for the month: we have been feeding Mason a little by mouth most nights. He has tried rice cereal and peas, and really trades of which is the lesser of the evils. Eating by mouth is a foreign concept to Mason. He hadn't done it in 5 months, and the last time it was by sucking on a bottle - no texture, no need to "chew." He is doing all the regular first time eating things like blowing raspberries and getting food all over the place, sticking his tongue out with food on it, putting his hands in his mouth then all over his clothes or whatever is nearby, or just plain making his mouth impossible to "catch." Sometimes I think he's too smart for his own good.... Soon after we find a strategy that works to get the food in his mouth, he figures out a way to beat the strategy. He is really keeping us on our toes trying to find another way to get the food in.

The whole reason for stopping the feeding by mouth all those months ago was that the doctors thought that food was going down the wrong tube when he tried to swallow and possibly getting into his lungs (aspiration). This is still a risk, though he had a swallow study (series of xrays watching food go down) that showed with baby food he could do well. As we've been feeding him by mouth recently, we're just not sure if he is aspirating. One of the key signs before was his oxygen need going up. Recently there have been a lot of reasons for the oxygen need going up, so it's hard to tell what's happening. We'll continue to work with the Speech Pathologist (feeding expert) to figure out if this feeding by mouth thing is ok for Mason right now.

Weight:

Mason is growing like a weed! Normally, growth slows down around this age, but not with Mason. He's continued to pack on the weight and really is getting "chubby!" We found out from our NICU friends that Joey (who also has feeding issues) had been called "overweight" at his 1 year visit because his weight was getting to be too much for his height. Soon after that, we talked to the GI doctor and nutritionist to find out the optimal growth for Mason. Sure enough, his weight was getting to be too much for his height. So, we've slowed down the calorie intake and are hoping that the height catches up (afterall that's the indicator that his lungs are getting better, too).

We have an official appointment where he'll get his weight/height checked on Tuesday, but with our scale and tape measure today, our little chunky monkey is weighing in at 18 lbs. 11.2 oz. and 26.5 inches long. His growth has really taken off!

Development:

Unfortunately, with the dumping syndrome, a lot of Mason's energy and strength was zapped. He was so uncomfortable between feedings that all he wanted/could do was lay down or be held. As a result, he had lost quite a bit of strength. Add to that his very rapid weight gain, and what strength he had is not quite enough to hold him up sometimes. So, he now finds it difficult to stand and hasn't really made progress on his getting up on all fours. Having said that, though, he is pretty much rock solid on his sitting and is making progress toward doing some scooting around on the ground (commando crawling). It takes a lot of help from mom and dad, and some frustration on Mason's part, but he is able to move forward a little bit on his belly - a great accomplishment in our eyes!! We have another PT appointment next week to help give us tips on how to help get his strength back in his legs, so hopefully, we'll be able to have some more good things to report next month.

We finally also had a check back with the orthopedic surgeon who has been working with Mason for his left elbow tightness and his hips. When Mason was born, because he didn't have enough amniotic fluid to move around in, his arms and legs were pretty much stuck in 1 position - legs overhead and left hand pinned near his ear. We were really concerned about the long term effects of both of these, but fortunately with some stretching and encouragement for use, Mason's left elbow is nearly stretched out - still a few degrees to go to be fully straight, but he can use it for almost all of his activities - and his hips are doing fine. The doctor didn't feel we needed to follow up with him any more! Hooray! One doctor down.

Just for kicks and giggles, here's a list of all the doctors/providers that Mason has on his team:

pediatrician

full time nurse/dad

lung doctor

heart doctor

GI doctor

general surgeon

physical therapist

2 nutritionists

speech pathologist

kidney doctor - who consults as needed

orthopedic surgeon - not any more!

We've definitely seen those peaks and valleys I talked about, but we know things will continue to get better. Mason is still so much fun to be around and his laugh is infectious. We are so lucky to have him in our lives!

We hope this finds everyone doing well. Thank you for all of your support and prayers!

Love, Christi, Bill, and Mason