Cystic Fibrosis

Today, we found out that Rowan has Cystic Fibrosis (CF). This is a genetic disease that is incurable that causes problems with proper nutritional absorption and lungs. The average life expectancy is currently about 36. They have made a lot of progress in dealing with this disease in the last few years and it is likely that as time passes, that expectancy will rise as well.

The real issue at the present is that with CF comes high strain on the lungs. For the heart repair surgeries to work, Rowan needs strong lungs. There is one case we could find of another kid with CF and heart defects. They were able to complete his repair with some modifications for the lung problems. That said, there is a possibility (no, we don't know what the chance is) that he will not be a surgical candidate. Surgery is his only choice. If a surgical center will not accept him to operate, we are out of choices.

In our favor, he is not showing any signs of CF yet. He also has genes that mean that he has a milder form of CF and it may not impair his quality of life as much if we can get his heart repaired.

This is pretty much hell, but I think we are so exhausted at this point, we just feel numb.

Our insurance approved St. Louis Children's as a potential program for Rowan. Tomorrow the doctors here are going to call and try to get that hospital to accept Rowan. I'm hoping that they will give him the chance we so desperately want for him.

Keep your thoughts with us. For now we are going to try to get some rest so we are ready to face whatever tomorrow brings. We don't really have more information at this point, so we will share more when we know more.

Surgery Cancelled, Transporting Somewhere Else

Well, never say that I don't have a sixth sense. After we found out about Rowan's heart defects from the pediatric cardiologist, I said "I think they're going to have to transport him". Man. I hate being right.

The surgeons met with us and showed us the three different options that they knew of to approach surgery. One of the surgeries was only possible if everything looked exactly the way they wanted to when they opened him. If not, they had a backup plan...that they made up and has never been done before because nobody there (two pediatric cardiothoracic surgeons with a lot of experience) has seen Rowan's set of heart defects before. The third option Rowan only had a 50% chance of surviving. Should these fail, transplant would involve transporting him to a different facility in a much less stable condition.

So, they presented secret option D - go somewhere else. The surgery he needs is done frequently at other facilities. If he goes to a center where they do these often AND have transplant services available, he is likely to have transplant as an option.

He can wait up to (ideally) another week for surgery.

So - the way I see it, there is no down side to transporting. Sure, we'll spend Christmas away from our daughter and family. Yes - it will be inconvenient. And yes - this is going to really hurt us financially because we won't be able to work - BUT we have support and will work it out. And most importantly - this gives Rowan his best chance.

The staff here is working on figuring out what facilities our insurance will consider "in-network" and approve. Once a facility is chosen, that facility will send a helicopter team to collect Rowan and my husband. Rowan is very stable so transport is very low risk. I will follow by car or plane depending on the distance. Our daughter will move in with my parents for a month. So tonight we are going to spend time with family, maybe do Christmas with our small little family - and start getting ready for a trip.

Official Plan

Rowan is doing fantastically considering our goal of keeping his stable until surgery.  His blood pressure hasn’t been fussy and all of his other vitals haven’t hiccuped either.  This has allowed them to pull him off and lower several of his medications.  His eyes flutter every now and then, so I get to see those beautiful gray eyes more often now and he’ll hold my hand for quite a while.
The cardiac team met today.  There is some dispute about what surgical route is best for him that they won’t be able to decide on until they open him up Tuesday.  There are a few possibilities, but the main differences are these.
He may or may not need a bypass machine.
He may need surgery again in 3-4 months or in 6 months.
His recovery time might be a little shorter with one of the options.
BUT, depending on what he looks like when they can finally see his actual heart, they will decide what’s best and if it’s the best course, it really doesn’t matter what it does to his recovery time or surgery schedule.  It’s just the best thing for him.
Rowan is in the hands of incredibly capable people.  I am confident in their abilities and I know that they are all working towards the same goal we are – for Rowan to live a long, healthy, joyful life.
Also – I wanted to thank my work family.  These woman have been amazing at supporting me through my pregnancy and have not skipped a beat in helping me since Rowan arrived.  They sent gift cards to local restaurants up to us AND they sent a video they made with my students welcoming Rowan.  It was truly one of the most touching things I have seen.  These woman are incredible and I am very blessed.  Thank you ladies of JWI.  You have no idea how much you mean to me and my family.

Surgery Tentatively Scheduled

They are planning on doing Rowan’s first surgery Tuesday.  It is the worst surgery that he should have to ever survive.  He is having the Norwood procedure done, plus they are going to repair his aortic arch as well. Don’t google survival ratings. 

How are we doing?

Well, this is just a bad situation to be in.  My husband and I haven’t really seen each other much.  We’ve been taking opposite shifts at the hospital sitting with him.  My daughter hasn’t gotten to see him yet, but we have at least been able to see her a little the last few days.

As far as the surgery goes, we are actually pretty excited about it.  If it wasn’t for the intensive care he is receiving, he would have died on my birthday.  Instead, he’s lived almost an entire week, we know what’s wrong, and they’re going to fix it.  It is all bonus time right now.  Every minute we get with him is extra.  He can’t come home or even wake up until after this surgery.  The “but what if something happens during surgery” question isn’t something we dwell on because we know these people are doing everything they can and that this is one step closer to him coming home.  My husband will try to post a picture of what his heart looks like now and where we want it to go to after surgery once the surgeon goes over it with us.

To be honest, we are more dreading his recovery.  They won’t close his rib cage after surgery because he will be too swollen and they don’t pressure on his chest.  They will sew his skin closed and when he is stable enough and the swelling has gone down enough, they will open him back up and sew his rib cage closed.  Sometimes this takes up to 2 weeks to happen.  We have been warned that the week after will be really bad.  And I think we’re dreading having to see him worse before he gets better more than anything.

If you are looking for ways to help:

1.) Healthy snacks – the choices at the hospital are basically vending machine food so some healthy alternatives would be nice.

2.) Quick/easy breakfast items – things like bagels, bars, fruit, etc. that we can eat on our way to the hospital.

3.) Drop by food/drinks at the hospital – If you are near Saint Francis and would like to drop off food or drinks for us, send me a text and we’d be happy to receive it. My number is on my facebook information page.

We will need the most help when he comes home.  So if you are looking to come clean, do laundry, babysit, etc. plan on being needed around the 2nd week of January and onward.

Crash and Recover

For Rowan's first 24 hours of life, his blood pressure struggled, his respiratory rate became more and more sporadic, and they had to continually adjust medications to keep him stable.  We didn't see as many of the changes because we weren't sure what to be looking for, but when he was about 22 hours old, he was struggling to breathe and hyperventilating.  At one point he opened his eyes and I ran over next to him.  He looked at me for just a minute before his eyes rolled up and he looked like he was having to fight.  They decided it was time to go ahead and put him on a respirator.  He was having to work really hard and they wanted to put him on a machine that would do the work for him.

This meant that he had to be sedated and paralyzed, then have a breathing tube inserted.  They asked us to leave the room and told us they'd call when we could come back.  Leaving the room and leaving him, knowing that this was best but that he wouldn't be conscious again for a long time and I might not get to look at his eyes again was the hardest thing I have ever had to do.  My husband and I both really struggled that night.  We got to see him again about two hours later.  He was breathing slowly and deeply with the help of the machine and his other levels had started to stabilize as well.  While it was hard to see him with more tubes, seeing that he wasn't having to fight and struggle so hard made it clear that the respirator was the right choice and he was more comfortable.

We were hoping so strongly that because he looked so good and was born at full term and a strong weight that we might luck out and he'd be okay.  His crash late Sunday showed us that we weren't going to luck out like we'd hoped.  It was a bit of a shock to realize that we were going to look at worse case scenario as a reality and have to face a much harder few weeks than we'd tried to believe was possible.

The next morning he was continuing to improve.  His blood pressure was stabilizing and they were able to reduce some of his medications.  

Today, he was stable enough that they decided the could go ahead and send him to the cath lab.  They sent a tube up through his groin into his heart to inject dye and take pictures to make sure they understood exactly what his heart looked like.  He did a wonderful job in the procedure and has been becoming stronger and stronger since.  Now the surgeons are developing a plan for repair and a schedule for surgeries. 

Meanwhile, his blood pressure has stabilized and he's breathing room air (oxygen that is concentrated at the level normally found in the air around us).  They have taken him off the medication that paralyzes him so he can wiggle a bit to keep him from swelling or developing fluid build up (like pneumonia).  He's still on sedation, so he won't wake up, but he may respond to things like our holding his hands.  They also are stopping IV nutrition and he may get to start receiving breast milk through a feeding tube soon.  

Hopefully, we'll have a surgery date sometime tomorrow.  Until then, we expect there to be ups and downs, and we are enjoying his current up.  For a child in the ICU, it is often a balancing act.  Some level is off and has to be corrected...and then throws another level off that has to be corrected.  It's hard to leave the hospital because there is always something we are waiting to hear about, but we have made it to see our daughter a few times and we did sleep at home yesterday.

We are now in the PICU - which means TV and an XBOX 360 as well as food being allowed in the room.  He seems to be doing really well here and everyone in the take care of Rowan team has been spectacular.  We're remaining optimistic.  We are very proud of how strong he is.  We are comfortable, well-taken care of, and just a little sleepy. 

Rowan is Here

Rowan Elyas Fowler was born December 10th, 2011 at 11:45 pm after a short 5 and 1/2 hours of labor.  He weighed 9 lbs and 3 oz. and measures 22 inches long.

After he was born, they took him out of the room to clean him off and weigh him.  His APGAR scores were 8 and 8.  He looks soooo normal!  He's beautiful and looks like his sister..but manlier.  He doesn't have eyelashes that stick out five inches, and he has a stockier build.  He cried as soon as he was born and has been doing fantastic.  I got to hold him to say Happy Birthday and goodbye before he was taken to the NICU.

His vitals have looked great.  The cardiologist has seen him twice and they are mapping out the best options to discuss with his committee on Friday.  They have started him on a low dose of prostaglandins just as a precaution.  This medicine has some potential side effects, but makes sure that his blood continues mixing well so he gets enough oxygen.  So far, no side effects!  His sats are staying between 85 and 95 which is perfect and all of his other vitals look awesome.  It's hard not being able to hold him, but I've seen him twice and I can hold his hand.

He will be here in the hospital for a few weeks at least.  There is basically no way he'll be home for Christmas.  Odds are, he will need a surgery next week, but the extent of that surgery won't be something we know for a while.

For now...he's doing well.  That's my focus.  When he's not doing well anymore, I'll worry about it.

Ready When You Are

We are now past 38 weeks.  Rowan is at expected to be at least 8 lbs even if he was born today and odds are he will be a bit more than that.  We’ve made it to December. 

Honestly, I didn’t think I would be able to get this far.  Trying to stay calm and keep a level head while dealing with all of the emotions of carrying a child you know will face open heart surgery repeatedly is especially difficult when you throw in trying to be a good mother while working full time and taking care of your family while your husband is completing his internship year of residency.  But we made it. Him and I.  We took it one day at a time and despite a few little scares, we have reached the point where there is nothing more I can do for him.

Soon Rowan will join us.  At the latest, he will be born on December 12th.  I have done all I can.  Soon he will have to prove what he is made of much earlier than other children ever have to.  We will be by his side, but soon it will be up to him.

Rowan, honey – we’re ready when you are.