Happy 7 Month Birthday, Mason!

I can't believe the first half of Mason's first year is behind us. I'm reminded of the first year of marriage. There are ups, there are downs, and its worth all of the hard work in the end. As many of you have read in the recent blogs, this has been a tough month for us - perhaps more difficult than any since we were in the NICU. Mason has had a lot more difficulty with his lungs this month, but continues to be a happy boy most of the time, and continues to light up our lives with his infectious grins and giggles.

Lungs/Heart:

I'm going to start with the lungs and heart for this month's update. Since most of our adventures this month started because of Mason's breathing, it seems appropriate. On the 6 month update, I wrote that we had just found Mason's lungs weren't exchanging the oxygen and carbon dioxide as they should. We increased the dosage of his diuretics in hopes that would make it easier for him to breathe. Unfortunately, the effects were not dramatic and over the next week, his oxygen need continued to rise. So, on the 2nd of October, we took him in and he was admitted to the local children's hospital. He stayed there for a week while the med students, residents, and attending physicians all worked to relieve his symptoms, help him breathe easier, and find out why his oxygen needs were changing/worsening.

The doctors had 4 theories as to why Mason was having increasing difficulty with his breathing. They couldn't (and still can't) exclude any of them, so we're trying to continue to investigate so that we treat the correct one:

1. Reflux from the feeding tube was causing a little bit of food to slip into the lungs and causing problems there.
2. Dosage of diuretics still wasn't high enough for his weight so he wasn't getting rid of enough fluids.
3. The increase in quantity of food over the previous couple of weeks had been too much for his system and he wasn't able to process it as fast as it was coming in.
4. He had a cold, flu, or some other virus.

They pretty much ruled out #4 with some tests, but couldn't prove that the other 3 had a role or didn't have a role in the worsening. So, they took steps to address all 3. They gave him a couple of doses of lasix (diuretic) to get fluid off of his lungs, a 5 day round of prednisone (steroid) to help strengthen his lungs and advanced his feeding tube so that it went through his nose to his small intestine to help prevent his reflux. They also slowed the intake of food way down and changed his feedings to be continuous. In other words, he is hooked up to the pump for 20 hours every day and has 4 hours of rest. About a day after all of this was done, he started breathing much easier, had no more puking, and was so much more playful. He started smiling just to get a reaction out of us. It was fantastic!!

Unfortunately, shortly after leaving the hospital the effects of the steroids did wear off and Mason's breathing started to become more difficult again. So, back to the pediatrician we went and Mason was re-started on the steroids. At the same time, he also caught his first cold. Thankfully, with the extra steroidal help to his lungs, it wasn't as significant of an event as it could have been, and we didn't have to re-admit him to the hospital. We are still in a wait and see pattern right now. Now that Mason has finished his 2nd course of steroids, the cold symptoms are coming back, but we are watching closely. Our pediatrician is wonderful and following up with the heart doctor, the lung doctor, and keeping on top of things with us. We are so grateful for everything he does!

As far as the heart goes, while in the hospital, Mason had a repeat of the echocardiogram (ultrasound of his heart). Thankfully, it doesn't show any worsening of the stress on the right side of his heart, but it is not better either. It is possible that this is also playing a role in Mason's increased need for oxygen, but difficult to determine when the tests don't show any change. This remains to be determined.

Eating:

So, the tube feedings continue. For the first couple of weeks of the month, before the hospitalization, Mason continued to have difficulty with the tube and was puking it out 1-2 times per day. Yes, that means we were having to put it back in 1-2 times per day. Poor little guy! I can't imagine how traumatic that was for him, though I know how traumatic it was for Bill and me. So far, with a 3 day exception, now that the tube has been in the intestine, it has been much more successful for Mason. He has been able to tolerate all of his feedings very well and keeps the tube in almost all of the time. The 3 day exception happened last week. First, he hooked his little sneaky finger on the tube and pulled it out. Then, we couldn't get it all the way into the intestine, so we had to put it in again. Then, we think it moved back into the stomach because Mason ended up puking it out the 3rd morning. Since it was put back in a 3rd time, though, he's been able to keep it down.

While in the hospital, the general feeling was the the reflux was the most likely reason for the increased oxygen need. So we started talking more seriously about the surgery. We know the reflux is there, what we don't know is if the food is sneaking into his lungs. One of the residents was in our room at the hospital when Mason puked and commented on how well he protected his airway. This is a really good sign, but he may not be good enough to protect the lungs all the time (especially if he's lying on his back as he so often is). So, we talk more about the surgery. The surgery we are talking about has 2 parts.

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 can 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. It might be that we don't have a real choice. If the reflux is causing the worsening of his breathing/oxygen need, we risk lung damage if he doesn't have the surgery.

We returned to see the GI doctor today to discuss our options at this point. She is not convinced that the reflux is the true contributor to the increasing oxygen need since his lungs have continued to have problems since the tube was put into the intestine. So, we are going to do more tests. Mason is scheduled to have another swallowing study in a couple of weeks to see if he does get food into his lungs when he eats or when he refluxes. This will help us to determine whether or not the reflux is really the culprit. If he doesn't get the food into his lungs, chances are there isn't a need for the "1 way valve" part of the surgery. We will just have to see.

Weight:

Finally, some good news! Mason has continued to gain weight through all of this and is averaging 1/2 to 1 oz per day. His length and his head circumference have improved as well. He is still well below where he should be for his adjusted age (5 months) in weight and length, but he is gaining by leaps and bounds!

We hit another major milestone with Mason's weight. At the GI doctor's appointment today, he measured in at 12 lb 1.3 oz, 23.5 inches long, and a head circumference of 16.5 inches. I am amazed at how big he is getting, but thankful (in 1 respect) that he stayed small for so long -- he got to wear some really cute newborn and 0-3 month clothes for a really long time!! He is finally starting to fit into some of his 3-6 month clothes and we have some really cute Halloween outfits. He will be the best dressed kid in the neighborhood!

Development:

Mason had his monthly visit with the physical therapist last week and he is still on track with most of his developmental milestones for his adjusted age (just 5 months from when he was supposed to be born). He has caught up a little bit on the milestones that require a lot of muscle endurance (head control and posture support), and we attribute that to his feeling better and being able to concentrate on things other than breathing for a while. The PT continues to be very encouraging and says she does not see any neurological involvement (i.e. no evidence of cerebral palsy at this point). Mason is getting stronger and is able to sit up with less support, prop himself on his hands when doing a modified version of "tummy time." His endurance is improved quite a bit, too. He smiles and "talks" almost all of the time and loves reaching out for his toys. He loves sitting and watching just about anything and is very attentive to what's going on in the room. He also loves to "dance" and giggles quite a bit when we help him to shake his thang!Return to Work:

The transition to work has been difficult over the last month. It is hard to be away when so much is going on with my little guy. It is reassuring to know that Bill is there and takes care of Mason's every need (and a lot of wants, too, I'm happy to say!). The folks at work have been wonderful and so supportive. I can be with Mason when he needs me and at work when he doesn't. I am so thankful to have such a flexible and supportive work group.

Thanks again for everyone's prayers and support! We couldn't get through this without all of you!

Love,
Christi, Bill, and Mason