The hospital shuffle

Mason started gradually taking breast milk last night by tube and so far, no spitting up! It looks like the surgery was successful and his pyloric stenosis has been fixed. I didn't mention it before, but the pyloric stenosis has absolutely nothing to do with his early arrival. He would have had it even if he had been full term and it may have been more serious since he wouldn't have already been in the hospital being monitored closely. We were working on his bottle feedings and reflux before this little road block, so we're hoping to get transferred back to Northside to continue that. The 7th floor nursery where we were is strictly dedicated to preemie feeding issues (it is referred to as the 'feed and grow' nursery), so we had full access to doctors, physical therapists and lactation consultants who specialize in that area. Plus, we have a really good relationship with the doctors and nurses and they know his history. Everyone at CHOA has been great, but since it is a surgical and critical care NICU, teaching preemies how to eat isn't exactly their thing. Unfortunately Northside doesn't have a spot for us yet, so we hope to get back over there tomorrow. How ironic that we WANT to go back!? Until then, Chris and I are spending as much time as possible at the hospital since the doctors here don't know his history and there has been a bit of miscommunication. I brought my laptop today, so I have plenty of time to blog (the connection here is too slow for anything productive like working). It has been a long and exhausting week to say the least!

Being over here has really given us some perspective and helped us realize that we're very lucky, even with the setbacks Mason has had. There are many critical babies here with very serious and sometimes long term problems. Please say a little prayer for all the NICU babies (and older children) here at CHOA.

Last night, poor Mason had to have an IV put in his head. His IV came out and he was out of good veins since he has been poked so much lately, so it was the only option. At least they didn't have to shave his head for it. And we hope to get it out as soon as he is on full feeds. Here's a picture of my little conehead.

Mason is recovering

Mason made it through surgery yesterday and is recovering in the NICU at CHOA. The surgery went well with one minor complication. While trying to open the pyloric muscle, the surgeon made a small perforation in his stomach. Luckily, he found it during surgery and stitched it up, but we will be watching it closely to make sure it doesn't leak and cause an infection. There were a few emergency surgeries yesterday that caused Mason's to be pushed to late in the day, so we did not see him until very late last night. He's doing great this morning and has been sleeping pretty much since they brought him up. We're waiting for his doctors to discuss when we will try to feed him. They have already warned us that he will probably vomit his first few meals just because his stomach is not used to food and that doesn't mean the surgery was unsuccessful. We don't know yet if he will stay at CHOA or be transferred back to Northside's NICU to continue working on his feedings. CHOA is typically a surgical NICU, so it isn't really meant for long term care.

Thanks for everyone's thoughts and prayers. Chris and I are certainly getting a crash course in parenting these 2 short months. Hopefully this will fix his tummy problems once and for all! Here's a picture of our sweet boy resting comfortably the morning after surgery.

Finally a diagnosis

It's been a very long day, so just a quick update on Mason's tummy troubles. An abdominal ultrasound confirmed that he has a condition called pyloric stenosis. Basically, it means that the opening from his stomach to his intestines is too narrow. It's pretty rare, but Mason had all of the classic symptoms. In fact, me, Chris and my good friend Laura all self diagnosed him with a little help from google. Who needs GI doctors when you have the internet? It took longer than we would have liked to get the ball rolling, but things moved pretty quickly once we had a diagnosis. Mason was moved across the street to Children's Healthcare of Atlanta (Scottish Rite) this afternoon and he will have surgery sometime tomorrow. It's a pretty simple procedure and hopefully he will be as good as new in a few days.

Of course, any surgery on an infant is a scary thing, but we are relieved to finally have a diagnosis and a plan. We knew something wasn't right and it wasn't just reflux. Here's a good article if you want to read more about pyloric stenosis. I will post an update on his progress as soon as I can.

http://kidshealth.org/parent/medical/digestive/pyloric_stenosis.html

And just for fun - I snapped a quick picture of Mason in his 'emergency isolette' for transport across the street. Baby's first ambulance ride :-)

Tummy Troubles

One thing we have learned here is that things can change in a heartbeat. And unfortunately, this time it was for the worse. Last week, Mason was doing great with his bottles and his reflux really seemed under control. Then all of a sudden Thursday morning, he spit up his entire bottle. This was strange because even through all of his reflux troubles, he had never spit up. We hoped it was just a fluke, but since then he has spit up every mouth feeding we have given him. And this isn't your average infant spit up. We're talking he doesn't stop until his stomach is completely empty. We finally stopped trying on Sunday and we're waiting for the GI specialist to see him today. We hope he will do an upper GI study to see if he can find a problem. We don't think it is related to the reflux since it started so suddenly and happens hours after his feeding, usually long after his reflux symptoms have stopped. Mason is back to getting all feedings through his TP tube and he doesn't have any trouble with that. The TP tube bypasses his stomach, so that seems to be the problem. Anything that goes in the stomach comes back up.

We're praying that they figure out the problem very soon and that it isn't something serious. His neonatologist ran a few tests and tried a few things over the weekend, but decided it was best to wait for the specialist. As usual, our little Mason is such a trooper. You can tell he doesn't feel quite right (and the poor guy is hungry), but he hardly fusses at all.

This is how Mason sleeps these days - with a few dry wipes under his face to try to keep him dry. And of course his 'sock hands' to keep his tube in place. Even when his stomach is empty, he continues to spit up clear stuff.

Slowly, but surely making progress

Mason keeps reminding us that he prefers to do things in his own sweet time. Maybe he takes after his Daddy (aka Pokey :-)? The 4 bottles per day proved to be a bit much over the weekend, so he was cut to 2 bottles on Monday. He did very well and was increased to 3 today. I'm not sure what changed, but his reflux seems much better the past few days. I hope I'm not jinxing it - I said that before and it came back with a vengeance. He continues to have a few apnea episodes, but they are very infrequent and he usually recovers on his own. I think he's also starting to recognize us. One night this week he was crying in his crib when we arrived (very rare for him) and he stopped immediately when he saw us.

I can't believe my baby is over 6 weeks old! Honestly, we didn't think he would be in the hospital this long. He is definitely teaching mom and dad some patience! For now, we'll continue working on his bottle feeding and try to keep the reflux and apnea under control. Here's a few pictures from the past week.

He still has to wear mittens all the time because he loves to pull on his feeding tube.
His hair is still looking a little bit red.

Daddy playing with Mason after his bottle.

Is that a smile?

And as always, there are more pictures on the picasa site: http://picasaweb.google.com/chenretty

Back on the bottle!

We've had a pretty uneventful week (which is a good thing!). The doctor decided to keep Mason on the tube feedings all week to make sure that the apnea stayed under control. Thankfully, it did, and he got plenty of much needed rest. We finally got the go ahead to feed him bottles again on Friday and he's doing pretty good so far. The reflux seems better (thanks to the prevacid finally kicking in) and he has not had any serious breathing episodes. He isn't as eager to eat as he was before and it takes a lot of coaxing to get it down. We think it's because they changed the supplement in his breast milk and he doesn't like the taste. That was one of the failed attempts to help the reflux, so they're switching it back tomorrow. He's currently taking 4 bottles per day and we will increase it Monday if he continues to do well. He was also moved to a room with a window view! We're hopeful that he'll start to recognize night and day a little bit before he comes home (yea, right).

Mason is growing like a weed. He's up to 6lbs, 4oz and we can tell he's 'filling out'. He is also noticing more of his surroundings and he loves watching his mobile and sucking on his pacifier. He's still a very laid back baby and rarely cries or gets upset. There was a delay with his bottle this morning and he was obviously hungry, but he just squirmed and grunted until it arrived - no crying at all! Now that he's awake more often, I'm starting to feel like we're missing out on things since we're only there a few hours a day. I'm so ready to get him home and pray that his feedings continue to go well. Here's a few pictures from the week. I haven't been taking very many - I'll try to do better!

Sucking his thumb again. He was on a nasal cannula until Tuesday because of his apnea episodes.

Sleeping in his boppy pillow. Yes, he has socks on his hands because he keeps trying to pull out his feeding tube and mittens don't stay on as well.

Mason's Baby Shower

First of all, a quick update on Mason. I asked him to please be good this weekend so I could enjoy my baby shower without worrying about him and he did! We finally figured out that his apnea is caused by BOTH reflux and prematurity. We are seeing a significant improvement now that he is being treated for both. He has not had a serious episode since Saturday night. The GI specialist saw him today and will keep the tube in place for a few more days to let him rest. Then we will start mouth feedings again very slowly and treat the reflux. He will also continue getting caffeine for now to treat the prematurity apnea. We hope we've found the answer and can start moving in the right direction!

A quick picture of my sleeping little angel.

With Mason doing well, I was able to really enjoy my (belated) baby shower. It had to be rescheduled from the original date because I was in the hospital, but we still made it before Mason's homecoming. My great friends Laura, Misty and Margie hosted a delicious brunch at the Blue Ridge Grill in their private wine cellar. Everything was perfect and I was overwhelmed by everyone's generosity (and all the "stuff" necessary for a baby!). Little Mason is so loved and I can't wait for everyone to meet him! A huge thanks to my wonderful hostesses and everyone who was able to attend - it really meant the world to me! As I've said before, I don't think I could have made it through the past few months without the love, support and prayers from our family and friends.

The beautiful diaper cake, which matches the nursery (Margie and Carey were the artistic talents behind this masterpiece).

Some of the ladies chatting before brunch was served (I wish we had pictures of the food - amazing!!)

And the gifts! Note the all important Georgia onesie. Thanks Angie and Wayne (btw a TECH grad!).

Me with my beautiful hostesses, Laura, Misty and Margie. I love these ladies! And, yes, Laura is 36 weeks pregnant and such a trooper in heels! We will find out soon if Baby Rukes 2 comes home before Mason...

The roller-coaster continues

It has been a difficult week. The excitement over Mason's success with his bottles was very short lived. Unfortunately, his breathing problems got worse as his bottles increased and, by Thursday, he was too exhausted and having too many apnea episodes to even finish a bottle. His doctor finally agreed that the 'give it time' approach was not working. They have tried several things this week to pinpoint the cause of his apnea and treat it, so far with no success. First, they gave him caffeine, which is used to treat apnea of prematurity, but that did not help. Then they did some blood work and a urine culture to test for possible infections. All were negative. Then they decreased his bottles and put him on a very low dose of prevacid to treat the reflux. His reflux seemed a little better, but the apnea continued. His doctor still thinks that reflux is causing the apnea, so Mason will be seen by a gastroenterologist on Monday. In the meantime, he is temporarily on a continuous feeding tube that goes directly into his intestines, bypassing his stomach (no more bottles for now). This should remedy the reflux completely, which will hopefully stop the apnea if the reflux is the cause.

We hope this will prove that reflux is causing his apnea and then we can work with the specialist to treat the reflux. It is extremely frightening to witness one of his breathing episodes and we are starting to worry about them causing brain damage, although his nurse assured us that is rare. If the apnea continues, they will run more tests next week to try to pinpoint the cause, possibly checking for brain damage or seizures.

Please keep praying for our little guy. We need to find some answers very soon so we can get him on the road to recovery - and finally get him home!

Happy 4th of July!

I hope everyone enjoyed the Fourth of July. We had a pretty low key weekend. Chris ran the Peachtree (10K) and our good friends Margie and James joined us to grill out Sunday night (yumm!). And of course, we spent a lot of time at the hospital with Mason. I know it's been almost a week since my last post, but we've been pretty busy. Mason is doing great with his bottles, so Chris and I are making 3 trips per day to the hospital to feed him. I also went back to work part time last week until Mason comes home, so my days are pretty full!

Mason is now taking up to 6 bottles per day and we think he'll be taking all bottles very soon. He's definitely a good eater, but the reflux continues to cause breathing problems. He usually has a pretty bad apnea episode after his feeding which requires someone to 'remind' him to breath. He's gaining weight rapidly and is up to 5lbs, 4oz. We still don't know when he will be coming home - our best guess is another week or two. The main thing holding him back now is the apnea. It will improve with time, but we're also hoping that they will give him some better reflux medication soon since it seems to trigger the apnea. They have already told us that he will probably come home with a heart and breathing monitor. That would give me peace of mind, however, his apnea episodes have to decrease significantly for him to be able to come home. Here's a few pictures from his 3rd week.

This is his favorite spot to sleep after he eats. Sitting up helps with the reflux.
Mommy giving him a bottle.
Chillin' in my crib...And at 4 weeks old, he found his thumb! He was pretty excited when he figured out he could suck on it.