Step by Step

Meds down.

Respirator down.

Diaper instead of catheter.

Awake, kicking, grasping.

Happy and snuggly in a blanket, sleeping.

A nice day of slow progress to end out 2011. The goals we still need to accomplish are getting him completely extubated, and teaching him to eat. These will take several days, but more days like this and I think we'll manage.

Happy New Year Rowan!

We're going to watch the fireworks over the arch from Rowan's room tonight.

Slow and bumpy (does contain medical jargon)

This post may be a little technical, but I will explain as I go. - Doc

The day after the chest tubes were removed, Rowan had some fluid build up in his right chest that required a pigtail catheter (smaller tube with a curly end) to drain it. This is not uncommon after a big surgery like his and this tube is much better than the big chest tubes comfort-wise. The fluid did make it harder for him to breathe while it was there but once it was gone things got much better very quickly. His tidal volumes had been decreasing (his lungs weren't able to expand as much) because of the fluid and this improved a lot with drainage. (They got 70 mL off when they did it.) The amount coming from this tube has gone down a lot, so it likely won't be needed much longer. Basically, two big tubes out, one little tube back in, and it will come out soon.

He also had a tube in his belly (PD catheter) after his surgery to drain fluid. This had not been draining much, but it was because it had gotten clogged up. This was the same time he was getting the fluid in his lungs and they unclogged it when they put the little chest tube in. This had not been draining much since then so it was actually removed today. One tube out, no replacement needed for now at least.

One of the main goals is getting him off the ventilator (breathing machine). Today, he is at room air, meaning the air in the machine is the same concentration as what is floating around instead of having more oxygen in it. He is on SIMV, which means he gets help with his breaths when he inhales and it will only breathe for him if he does not breathe enough on his own. He is initiating all his breaths right now, so he is making good progress.

Today will be his first shot at food that doesn't come in an IV. He will get a tiny amount through his NG tube (goes through his nose down into his stomach) and that will get increased slowly as he tolerates it.

We are getting some cabin fever, so we are trying to get away from the hospital a bit more. We got to eat dinner with friends that are now here in St. Louis and that was definitely helpful not to mention actually being fun. Thanks Javi and Jessica!

Slow Progress

A week ago, we were told that there was a possibility that surgery wasn't an option for our son because of CF. We were told that we may have to look at putting our son on comfort measures instead. The worst 24 hours of my life were between finding out that CF and lung problems meant it was likely we were going to have to let our son go, and finding out that a hospital was accepting him. I am so thankful that this last week has gone very differently than we thought it would.

Saint Louis Children's took Rowan. He had his surgery the day after his arrival. He is doing well in recovery. I still can't shake the absolute "the world has ended" feeling I had last week completely - but I think it takes time to move past that extreme of an emotion.

Today, they took out the chest tubes (tubes that are inserted to drain fluid off of the chest after surgery). These tubes are supposed to be pretty uncomfortable, so I'm glad to see fewer things in my son. They also took him off several medications and are beginning to wean him off the ventilator.

It could still be several days before he is extubated and we can hold him, but I don't mind waiting. Every day we still have him is a gift we didn't think we'd have.

The hardest thing right now is that we can tell that he is in pain sometimes. Watching a baby cry while intubated is heartwrenching. They are keeping him comfortable without keeping him too sleepy to breathe on his own. It's hard not to be able to hold him and tell him it'll all be a bad memory, but I can hold his hand. And he can squeeze it back. Little victories.

Continuing to Recover Well

Right now I am sitting the parent waiting area while the surgeon and surgical team are in Rowan's ICU room. The rooms convert into operating rooms, so they don't have to wheel him down to the OR when they close his chest.

They leave their rib cages open and the incision location open as well post-op to allow for swelling. Now that Rowan's kidneys are doing well and he has reduced his swelling substancially, they are closing up his ribcage and sewing him shut.

After this, they'll let him adjust and monitor him for a while and then start working towards getting him off the respirator, significantly lowering his sedatives, getting his digestive system to function (for the first time ever), and letting him move towards being fully recovered. These things will all take a few days.

Yesterday, we had breakfast provided by a group called Heart2Heart. They had several "heart kids" ranging from ages 11-26 who are doing wonderful. The 26 year old is training for a half marathon right now. It was nice to see so many success stories and a reminder that it will not be like this forever.

We found an IHOP that was open to eat at, Skyped with my family to see Evelyn and let her open some of our presents for us and show us her favorite new toys, and managed to get a pretty good night's rest. It didn't really feel like Christmas yesterday. To be honest, any sacrifice, even missing Christmas, is NOTHING at all when your little boy is still here. Not all of the families in the CICU have been so lucky. Our little boy is still here. Our daughter is blissfully content with her extended family, and my husband and I are together. We couldn't ask for anything else.

In Recovery - Hoping for Boring

Rowan's surgery went well. He is in stable condition. He has several new tubes, but fewer medications. He is still on the respirator and will be for a while. He is sedated by not paralyzed. He is a little puffy, but not as bad as we expected based on how many people warned us what he might look like. His rib cage and incision are still "open" but covered with sterile material to prevent infection. The surgeon is planning on closing him on Monday after he has had time for swelling to go down a little.

As far as recovery goes, the surgeon told us that he expects Rowan to be in the CICU (Cardiac Intensive Care Unit) for 7-10 days. Then he expects Rowan to be in a transitional floor for 7-10 days. Then he expects Rowan to go home. We like that idea. A possibility of 2 weeks until we go home doesn't seem bad at all when we thought it would be at least a month. We will be happy to stay longer if he needs it, but it would be nice to half the time we thought to be away from our daughter.

Waiting for him during surgery was not nearly as bad as I thought it would be. One things that was nice is we went down to the surgery floor with him, so it wasn't like they took him away from us - we just parted ways as he headed to the OR and we headed to the waiting room.

In the waiting room, we busied ourselves with books and Netflix to pass the time. I even snuck in a nap. The hardest thing was how late it ended up running. We met with the surgeon a little after midnight and made it back to see Rowan around 2:00AM. We're still pretty tired today, but relaxing in his room with him while he works on recoving. Same old game of hurry up and wait.

And He's Off

What a horrible day to have technical difficulties. Blogger keeps deleting my posts.

Long story short - this is the 3rd time I've typed this, so it's the abridged version.

Surgeon talked with us. We feel that we made a really good choice in transferring. He does 20-24 Norwood procedures a year.

Rowan's Plan for Surgery Today:

Step 1: Repair Incomplete Aortic Arch http://www.pted.org/?id=interruptedarch1 (this site explains that well)
Step 2: Make sure he hole between the right and left ventricles has good flow.
Step 3: Norwood procedure (google it)

The nurse will update us each hour. Rowan could be in surgery fro 5-7 hours or even more. The surgeon will meet with us at the end of the surgery to tell us how it went. We should be able to see him an hour after that meeting.

We trust our little wolf to fight fiercely and continue to show everyone how strong he is. We trust the medical team. We trust that we made the decisions to give him his best chance. This is just another step.

Meet Me in St. Louis

Rowan is doing fantastic. He is stable, had no problems with his transport whatsoever, and has been upgraded to a larger bed.

We arrived in St. Louis around 7 last night and went straight to St. Louis Children's Hospital to see him. Let me say, that Saint Francis Children's Hospital in Tulsa is an amazing facility. It looks like a Science Center more than a hospital and is pretty impressive. That said, SLCH makes it look like we went from a pond to the ocean. I don't think I've ever been in a hospital this large.

The staff here have been great. They are very confident and kind when we ask questions and have been taking excellent care of Rowan.

After we said hi to Rowan and met with his nurse, we went to Haven House, where we are staying, to check in.

Haven House is a nonprofit service for families with ANY family member in the hospital that live more than a 25 mile radius away. We have our own room (which can sleep up to 4) and bathroom. The House provides breakfast and dinner as well as a gym and internet room. It costs $30 a night and is about 20 minutes away from the hospital but is located near lots of different retail stores so if we need anything it won't be far away. We slept there last night to make sure we were really well rested for meeting with the Doctors today.

Rowan's admitting physician called us last night to tell us that the care Rowan received in Tulsa was really good. They are continuing on with the plan they had for Rowan in Tulsa and have changed very few of his medications. They are focusing on reducing any swelling he still has before surgery.

There is a chance that he will have surgery today. He is the second case on the boards, but the 1st case today is pretty complicated (read: takes a long time) and so is Rowan's, so if they do not finish the first case by early afternoon, Rowan will wait until Monday.

Our daughter is doing wonderfully with my parents. The rest of my family is driving in to Tulsa today and we are planning on trying to Skype with them all Christmas morning so we can watch our daughter open her presents and say hi to everyone.

Thank you for all of your kind thoughts and support. We are so grateful for all that everyone has done to help us out. It has certainly been a humbling two weeks, but we are so thankful that we have loved ones to turn to.

We will update with information about surgery again later today.

St. Louis Bound

We received word this morning that St. Louis Children's Hospital has accepted Rowan. Tomorrow a team will come by air to Tulsa Int'l Airport, and then EMSA will bring them to the hospital where they will take Rowan to the airport and then on the 2 hour flight to St. Louis. They generally send a full medical team (Dr. included) for transports and Rowan is very stable so we are not worried about the transport.

We are going home to pack tonight. We will take our daughter to her 2 year old well child check early in the morning then come back to the hospital to say "see ya in a bit" to Rowan before he leaves, then we'll go see our daughter until she goes to sleep around noon for her nap, then we'll hit the road.

Once he gets there, it will be a while before we can see him anyway.


We have made living arrangements with the Haven House in St. Louis and will have a place to stay and at least breakfast and dinner provided for us each day.

My dad will be coming to stay with us at some point as well.

We are so happy that Rowan is getting his chance. I would much rather him die fighting than have to "let him go". We are still giving him his best chance. We are still moving forward.

I have been amazingly moved by how wonderful the staff in the PICU at Saint Francis have been. The nurses, RTs, and doctors have made this entire journey here much better than it could have been. I cannot express what their compassion and kind care of our son has meant. Thank you all for always taking the time to answer any questions we had and helping us take care of our little boy.

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.