Happy 8 Month Birthday, Mason!

It hardly seems a month has passed since our last big update. Once again, this month was difficult. Mason's lungs and reflux have continued to be a challenge and we've had to make some difficult decisions about what to do about it. Despite our challenges, though, we take great joy in watching Mason giggle, smile, and do some "firsts."

Lungs/Heart: We tried a bunch of different things to help Mason's breathing at the beginning of this "month," but to no avail. Mason continued to have difficulty whenever off of the steroids, so he ended up going on a constant, low dose. This held him pretty steady until just after Halloween.

The best part of this month is that we got some real clarity around why Mason was having more difficulty with his breathing. We found out how interconnected all of his issues are when we did a swallowing study on Halloween. We found that Mason was in fact aspirating (slipping food into his lungs) if thin liquids went into his mouth or if he refluxed. We also saw quite clearly that this has a significant impact on his lungs. 3 days after the test, Mason's breathing became much worse and we made a trip back to the hospital. This time around, we stayed for 8 days, but accomplished a tremendous amount. We had a case conference to get all of his many providers on the same "page," we had some xrays done that show that Mason's lungs are overall improving with time, and we made some of those difficult decisions (I'll go into details a little later).

We also repeated the ultrasound of Mason's heart. Again, it showed that things are stable. Despite the worsening in breathing, his heart is holding steady.

Eating: We have become quite adept at the continuous tube feedings. We've learned how to manage all the extra tubes and lines and don't quite know what to do when holding a baby that doesn't have the extras. With the exception of the aspirations with reflux and the testing (minor details, I know), Mason's feedings have been a breeze. He is getting much bigger and even looks like a chunky little baby now.

So, now for the decision. After talking to the entire team and each other, we decided to go forward with surgery for Mason. It is a very scary prospect, but his lungs cannot get better if he doesn't have the surgery. The continued aspirations will end up harming his lungs more, and won't allow them to get better. Many have asked what the surgery entails, so here are the details:

1. Insertion of a feeding tube straight into his stomach (g-tube)


2. Wrapping the lining of the stomach around the esophogeal sphincter (where the stomach and throat meet) to create a "1 way valve." In other words, the food can go down, but it can't come back up.

This is a very common surgery (especially with preemies) with a very good success rate, and it will be done by the same surgeon who did Mason's hernia repair. The challenge for Mason is, as it always is, his lungs. Because it requires sedation and ventilation (too much risk for reflux as they inflate the belly with air during the surgery), we are taking a huge risk. The best case scenario is that Mason comes out of the sedation and off of the ventilator easily. The worst case is that it takes a very long time to come off of the ventilator. We just don't know which scenario will play out. So, we are set for surgery on December 9 (just 2 days short of 1 year since we found out that I didn't have enough amniotic fluid and was placed on bed rest). We are extremely nervous about the surgery and recovery. Please pray that all works out well.

Weight:
We don't have the percentile information, but we do know that Mason has gained weight at a very good rate. He is tolerating his feeding tube really well, and like I wrote above, becoming a chunk! He is racing through his 3-6 month clothing, and almost a perfect fit in his 6 month clothes.

As of today, Mason measures in at 14 lb. 5.3 oz, 25 inches long, and a head circumference of 17 inches.

Development:

Mason has his monthly visit with the physical therapist on Monday, so I'm not sure if he's still on track for his developmental milestones for his adjusted age (just 6 months from when he was supposed to be born). I do see Mason getting stronger, though. He is now able to roll from his stomach to his back (unless he gets too frustrated at being on his tummy even for a little bit), and is working on sitting without support. He smiles, giggles, and "talks" almost all of the time and loves reaching out for his toys. Our biggest challenge right now is avoiding watching TV. It seems no matter what position we have him in facing away from the TV, he can still contort his neck/body to find it and watch it. Cracks me up!

Thanks again for everyone's prayers and support! We couldn't get through this without all of you! Please say an extra prayer or 2 for us around December 9th.

Love,Christi, Bill, and Mason