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.

37 Weeks

 

The NST today showed that Rowan’s heart rate looks excellent.  He still has plenty of fluid.  He is making breathing motions and is in a head down position.  All wonderful things.

My vitals look great, despite the fact that I feel horrible.  My doctor offered me a prescription of some sleep aids to combat my averaging less than 3 hours of sleep a day.  Not sure if I feel comfortable using them.  Even though I feel worn and tired and on the edge, my body apparently is doing super D-duper.

So this means that it is unlikely that my body will go into labor soon.  Good for Rowan.  The longer he is in, the better for him.

Bad for me.  He is pretty large.  They will officially measure him again next week, but since my daughter was 9 lbs and it took me 2.5 hours to push her out, they are worried about the stress level on Rowan if he is equally big.

Which means that a c-section is becoming more and more likely.  Either he comes out earlier, which could or could not be a big deal, and everything is fine – or we end up looking at a c-section.  Not ideal.

The important thing here is what is best for him.  We’ve got to give him his best chance – even if that means I have to suck it up and get over my fear of having someone cut on me while I’m awake.

We’re in the days of waiting it out now.  Any day now, or not. 

Generosity

Thanks to the generosity of the wonderful people I work with, we are now all set and ready for Rowan’s arrival.  We purchased several very soft and warm snap up outfits as well as warm hats, socks, and mittens for him to wear while he is in the NICU and afterwards from Amazon.com.  We even had money left over after buying everything he needs so should any surprises arise, we have back up funds to buy clothing or other things he might need.

The ladies at work threw us a shower last week.  It was beautiful (green and blue, our family colors) and amazing to be at a shower surrounded by women and I know and care about.

My daughter helped open several of the gifts and was really excited about some books that Rowan got.  She’s practicing reading them right now so she can read them to him when he comes home.

When I opened a card from everyone and saw that they had all pooled together to get us an amazon gift card for way more than I could have ever expected I was speechless.  It was all I could do to try to turn off the waterworks.  I was borderline weepy all day long thinking about how blessed I am to have women (and man) who were willing to help us when we needed it.

I have no doubt that Rowan will be provided for.  We are all going to take amazing care of him.  He is loved by many and has yet to take his first breath.

Just a few more weeks and I will get to meet my son!

Dr. Update at almost 35 weeks

Rowan’s heart rate looks great.  His fluid levels look awesome.  He is doing everything he should be, placenta still looks good, head down and engaged and he weighs….

6 pounds and 11 ounces?  Really!?!?  At one point, one of the measurements that SHOULD have been reading around 35 weeks +/- a week or two read 39 weeks 5 days….

She measured again and his measurements would put him at the average size of a fetus at 37 weeks 5 days gestation.  That’s consistent with the about 3 weeks ahead he has measured since we hit about 24 weeks.

No, I’m not diabetic.  They checked.

No, the due date isn’t wrong.  He was RIGHT ON measurement with his original due date until he hit 24 weeks and started growing like crazy…right around the time we found out about his heart defects and told him that he needed to grow big and strong so he could fight hard.

Guess he listened!

I cannot wait to meet him!  We are hoping that I can manage to carry this big kiddo until at least 38 weeks, which would be December 2nd.

So NO ROOTING FOR NOVEMBER! NO getting excited about an early baby.  He’s staying in as long as possible.  Anybody hoping otherwise is not thinking about what is best for him and needs to readjust their thoughts/prayers/wishes so we’re all on the same page.  Lots of thoughts for a December baby!

He’s going to get here, and he’s going to fight, and I cannot wait to hold him in my arms and tell him Happy Birthday.

34 weeks and all is well!

Quick update:

Dr. visit was uneventful – the best kind!

Non-stress Test looked good.  Rowan’s heart rate is doing wonderful and no sign of contractions yet either.

He’s head down, moves a ton, practices breathing movements, has a good level of fluid, and placenta still looks okay.

Next week they will take precise measurements of him to assess his size and compare his growth to our last growth scan from a few weeks back. 

I am finding that I do get tired much faster these days and “comfortable” is rapidly becoming a delicious memory – but the reassurance that he is doing well and the increasing likelihood that he will be developed enough to be stable when he is born do wonders to keep me moving. 

Plus, the tree in our living room and stockings over the fireplace mixed with the cool weather change are helping me remember that my discomfort is temporary and that he will be here in no time at all.

Neonatologist and NICU Tour

Today we met with a Neonatologist at Saint Francis.  He spent a near solid hour with us.  First he went over what he sees as the primary concern with Rowan.  He showed us pictures and recommended a few websites. 

Then he went on to explain what we can expect from birth – onward.  There will be a team of 4 for Rowan waiting outside the delivery room.  When he’s born, the nurse will take him out to be cleaned off and quickly assessed.  Then they will be bring him back into the room so I can see and hold him for a little while.

After that, they will take him to the NICU in the Children’s Hospital where the echocardiogram machine will be waiting outside his room for them to scan his heart and primary vessels to map out what they are dealing with as well as the pressure/flow strength, etc.  My husband will be able to stay with him throughout all of the testing they have to do.  He’ll be given an IV through the umbilical cord opening that will deliver prostaglandins, a hormone that will keep a small vessel (large in his case) open to help mix blood together so his body receives enough oxygen.  He will also be hooked up to a heart monitor.

That’s quite possibly all he’ll have.

They’ll send his heart study down to cardiology and on the first Friday after he is born a team will meet to decide on the best course of treatment.

Best case – he looks good, they slowly wean him off prostaglandins, he stays good, we go home and just take him to visit the cardiologist as frequently as needed.  He’ll likely be in the hospital at least a week BUT kiddos in the special NICU don’t have to wear the horrible “don’t steal the baby” bracelets

Rowan will have his own room in the NICU where we will have 24/7 visitation.  They also have a daybed and chair for us.  They even told us that Evelyn can come visit him for 30-60 minutes every day to see her baby brother!

Basically, the neonatologist made us feel like this is TOTALLY manageable.  While Rowan coming to us with these needs seems scary and new to us, they care for heart children frequently and are more than prepared to make this as easy a possible on our family. 

They told us that socks, mittens, and leggings he can wear right away.  He can have blankets.  They’ll put him in clothes as soon as possible, but he might need an IV in his arm eventually or leads for a monitor, so they recommend button ups so they can leave his arm out.

I guess when you get to the point you don’t know how to stay positive – it’s about time for tons of good news.  The last two days have been awesome for us.  We can totally do this.  We have an amazing team of doctors and nurses who are going to guide us through this and do everything they can to help Rowan come home quickly.

Oh THANK GOODNESS

33 week appointment was so much better.

I will be doing Non Stress Tests (NSTs) every week for the rest of my pregnancy.  That’s where they hook you up to a monitor to watch baby’s heartbeat for about 20 minutes.  Today was the first time I’ve ever experienced fetal monitoring that wasn’t done with a stethoscope.  It was kind of nerve wracking.  His heart rate was anything but consistent to someone who doesn’t know what to look for.  The doc said everything looks good though!  I’ve decided to bring a book in the future…and to ask them to mute the machine.

The ultrasound looked great.  His breathing motions are awesome, his heart rate is stable, and fluid level looks good too.  As far as the issues with the placenta go, still no sign of calcification – which means that we are still absolutely fine.  The doctor said she read some information and a report from our high risk OB that suggested that the problems she is seeing with the placenta could be absolutely nothing – and so they’ll just check on it it each week, and hopefully – it means nothing.

Also, my husband saw the chart of a little girl who was 7 months old and had the same set of problems Rowan does.  She was getting ready to have her FIRST surgery and looked totally normal.  So the last two days have provided that much needed burst of positivity we needed.

So – here I come December.  Rowan might be giant (5 lbs already? WHAT!?)  But I’ve got plans for our family that involve him making it to AT LEAST 38 weeks before he’s born and being home in time to be subjugated to the matching flannel pajamas my mother will buy for everyone for Christmas morning.

Nearing the End…

 

Well, our 32 week check up went pretty much super frustratingly horrible today.

The good news – Rowan is growing like a champ measuring right around the end of 34 weeks the beginning of 35 and weighing right about 4 lbs. 14 oz., which is wonderful.

However -

My fluid level is high normal, which doesn’t mean anything yet, but they have to keep an eye on it.

My placenta, however, is aging too quickly.  It looks much more mature than it should at 32 weeks, so now I have to go in for NSTs (non-stress tests) once a week as well as ultrasounds each week to make sure it is still safe for him to be in utero.  They are also checking with the high risk OBGYN to see if he needs to be seeing me to do advanced monitoring as well.  Too mature a placenta can mean bad things quickly – but we aren’t in the danger zone yet.  We should have a least a little bit of warning if it becomes life threatening for him.

That said, I am pretty much done with bad news.  This is the absolute last of it anyone is allowed to give me.

As of right now, the labor bag is packed.  Any doctor visit could easily turn into “go to the hospital now”.  I could also be looking at having an amnio again to check on how developed his lungs are…which just adds to all the things I get to have nightmares about right now.

I doubt there is any way he will make it to full term, which sucks because that would really have been helpful for him.

So now I have to take it super easy, get things ready at work in case I have to leave earlier than I’d hoped, and try to will my body to hold on as long as possible.

He’s strong.  He’s growing well.  He is a fighter and will keep fighting, even if his circumstances are not what we most desire, he’s just going to have to suck it up and deal with it.

Just like me.

So trying to spin things positively – we are monitoring him closely to be safe and give him the best chance possible.  I may not have to wait as long to know what we are dealing with.  The insurance company approved my delivery at St. Francis…but in their letter gave the address of the St. Francis in Columbus, OH…so that’s another phone call but it can be fixed easily.  AND he is almost 5 pounds – which means he will fit into newborn clothes and not preemie clothes even if he gets here early.

Man of Steel

One of the things I’ve been adamant about this pregnancy is that in no way do I want to remember this pregnancy as being scary and stressful.  I want to remember being happy and joyful as a part of this pregnancy as well.  True, this has been much more difficult than I thought it would be when I saw those two lines 6 months ago, but I am so excited to meet Rowan – regardless of the challenges we know we will face with him.

My husband and I decided quickly after Rowan’s diagnosis that we were not going to forgo normal pregnancy things because we were scared.  Maternity pictures being one of those things.

So after lots of idea searching, Doc and I headed downtown today to take some photos of Rowan and I together.  My little man is strong – we know that already.  So here are some of my favorites.

 

 

“The greatest gift you can give someone is to believe in them.”

 

And we believe in him.

 

 

 

“Strong is what you have left over when you’ve used up all your weak.”

 

 

 

“I can’t do this, but I’m doing it anyway.”

 

 

 

“Learning to ignore things is one of the great paths to inner peace.”

30 Weeks

Fingers crossed, Rowan still has a good 8 or 9 weeks in his current home.  Today at the ultrasound we watched him making breathing motions.  “Practicing” for when he is born.  We saw his heart again, and that one chamber that sticks out like a sore thumb.  That right ventricle and all that hooks up to it is such a big deal for such a tiny part of our son.

Once again, we were stunned as our doctor showed us his face.  He looks exactly like our daughter did when she was a newborn. 

Even though Rowan is still measuring ahead of average size, we are hopeful that I can handle carrying such a large little boy until at least December 5th.  It seems like a long way to go still, but I know it’s right around the corner.

I’m still working with the insurance company to make sure that they approve my delivery at St. Francis hospital, where they have a surgical staff and level 3 NICU.  Hopefully they will get whatever records they need in the next few days and that will be over and done with.

Other than some insomnia spells, I’m doing pretty well.  My husband has been home a lot more the last week, which has helped tremendously.  My coworkers at school are continuing to take great care of me.  I keep telling myself, I have to keep him in there for at least 8 more weeks.  Just 8 more.

In the meantime, we’re saving saving saving.  We’re hoping that we will be prepared for whatever financial needs Rowan has by the time he arrives – which means hello coupons, resale shops, and sale items.

Insurance Causes Headaches–(What I’m Sure is Part 1 of a Long Series)

Today I got a call from the hospital I am supposed to deliver at telling me my insurance had denied me permission to deliver there because it’s outside their system.

This was DESPITE the fact that on my reason for filling out a pre-admission form was listed as “Delivery of a fetus with CHD in need of a level 3 NICU”.  Also, DESPITE the fact that my insurance has all of the diagnosis information and referral requests from my doctors.

The hospital admissions called to tell me about it, because my insurance was telling them I was only allowed to deliver at a hospital within their system, one that does not have a NICU that can handle much of anything.  It’s not set up to be a hospital for high risk deliveries.

I couldn’t get ahold of the person from my insurance company who also tried to call me from referrals and I was freaking out.  What if I went into labor today and the hospital wouldn’t admit me?  What if Rowan was born somewhere that couldn’t take care of him because of some stupid piece of paper that wasn’t taken care of or some attempt by an insurance company to not have to pay for something?

I was so upset that I started shaking.  I was worried I’d put myself in early labor freaking about about getting this fixed – which would have just been the worst thing ever.

After thinking about it for a while and calming down, I called my OBGYN’s office and asked to talk to someone who dealt with insurance.  I had no problems with getting referrals from her office in the past and they seemed to have everything working like clockwork with my insurance prior to the whole mix-up today.  I explained what was going on to her and she was amazing.  She calmly told me that they could absolutely not deny me coverage at that hospital and that she had a contact with my insurance company and would call and get it straightened out right away.  She promised it would be fine and she’d call me tomorrow morning when it was all straightened out and that I could go to hospital with the NICU without worry if anything happened.

Lesson Learned!  Call the people who know how to deal with insurance companies and ask for help.  Sometimes you are lucky enough to get it.

Now, several hours later, it occurred to me that if something happens and I need to deliver/go to the hospital…I’m going to the one with the level 3 NICU and my insurance can be dealt with later.  I didn’t need to panic so much today.  I had it in my mind that if I went into labor the hospital I needed would reject me because of my insurance.

My husband wouldn’t have let that happen.  I wouldn’t have let that happen.  My OB wouldn’t have let that happen.

I think I expect to have to fight huge battles with insurance companies and make sure every tiny detail is attended to or something horrible will happen.  I think what I did today, calling the right person to get the situation fixed without me having to do it, is the best way to go.

I feel pretty confident that tomorrow this will all be sorted out and I will have panicked today over nothing.

A blog I read from another family whose child had a heart defect said the number 1 rule with insurance is to keep every piece of paper even remotely related to your pregnancy or your child’s care and to document who you talked to and what date and time anytime a doctor tells you you need a certain service or your insurance tells you it is approved or not approved.

Paperwork is always a headache.  I know I shouldn’t expect this to be any different, but it certainly feels different. Needless to say, I have a very large and rapidly growing file of papers now – with a few more documented phone calls.

Snappy

I find myself feeling more and more on edge.  You (women) know how when you are pregnant you feel like you are about to cry for no reason every now and then?  That’s the point I’m getting to.  Everyday it seems a little harder to stay upbeat and positive.  Everyday we get closer to his due date I start to feel a little more nervous.  I don’t think that it has anything to do with Rowan’s special circumstances.  I think it’s just stupid pregnancy hormones.  It’s kind of nice, to have normal pregnancy problems – and kind of crummy because pregnancy is very rarely easy for anyone.

I do notice that I am snappy.  I don’t have as much patience with people when I am frustrated (which is a lot of the time…it’s hard to not be able to take your socks and shoes off without it being a five minute ordeal).  I certainly don’t feel like I have time to calmly explain things in a nice way to people and I just want to make blunt statements and be done with it.  I move slower now but my to do list isn’t any shorter.

This must be that point in pregnancy where you turn into a mood swinging somewhat crazy person.  I’m tired all the time.  I spend all my “patience and niceness” energy with my daughter and my students…so to those of you getting what is leftover – please bare with me and spare me some forgiveness.  I’m trying to stay my usual self, but that just doesn’t happen everyday.  I’m sorry if you deal with me on a day it doesn’t.

Rowan Elyas

We have officially decided on Rowan’s name.

Rowan – Row for short (Little Bird calls him RowRow).  Rowan is a type of tree, one that was commonly used for making bows. Maybe one day Rowan will have a bow made from the wood of a Rowan tree! We loved the sound of the name, as well as it being a name that comes from nature.  I also like the thought of trees in general.  They are beautiful and strong.  The idea of having grounded roots and then spreading their own branches and seeds also makes me feel warm and fuzzy.  I also sometimes think that the circulatory system looks like roots and branches, so I think there is something to be said about CHD and Rowan’s name…but I don’t think it goes very far.

Elyas – Elyas is how we are spelling Elias. It is still pronounced Ah-LYE-is.  Doc’s middle name is Bryan, and sense it is spelled with a “y”, we decided to spell Rowan’s middle name with a “y” too.  Doc wouldn’t let me name our first son after him, so this is as close as I get.  Elyas is also a character in the Wheel of Time series by Robert Jordan.  We both really liked this character.  He talks to wolves.  Wolves are awesome.  Elyas also comes originally from Helios, the sun god, who is a known symbol of strength and resilience, which I know our little man will have a ton of.

We went to the OBGYN yesterday.  My Little Tree is measuring a full 3 weeks ahead and already weighs about 3 lbs 2 oz.  He is in the 93% of babies at his gestation.  The talk I had with him about how he needed to grow as big and strong as he could seems to have taken.  I have full faith that I am growing one tough little fighter.

Guest Post from Rowan’s Dad/My Husband

A word from Doc:

I thought I could add a bit the conversation here and since I have relative few outlets, I asked my wife for a guest spot. So here it goes:

1. I want it to be very clear that we are absolutely optimistic, but this should in no way indicate that this is easy. We have been trying incredibly hard to reassure those around us, which hopefully in turn will reassure ourselves in the process (I’ll get to that below). When it comes right down to it, a whole lot of bad things can happen when our little man gets here. At best, he won’t need open heart surgery at birth. At worst…well, he could simply not make it or be left without any real life to speak of. We simply don’t know. What we do know is that there is an overwhelming chance that he will have his chest opened before he reaches adulthood, maybe even more than once. The extent of even his most minor of procedures will be more involved and dangerous than anything I have ever been through. He could even need a heart transplant AT BIRTH. So you’ll have to excuse my frustration with my colleagues’ and friends’ responses when they say “Oh, at least you know. It can be fixed. It will be okay.” Yes, it can be fixed. I honestly believe that. We can fix a lot of things that are incredibly serious, including a heart with pieces missing and pipes that are hooked up where they shouldn’t be. It will NOT be okay.

2. We are going to make Rowan’s life as normal as we can. That being said, he won’t be able to do some things (like contact sports, as if he had much chance of that with our genes anyway).

3. My wife is a superhero. Many of her readers are already acutely aware of my wife’s innate awesomeness. It strikes me every day I’ve known her that she is an amazing woman with an astounding amount of strength, whether physical, mental, or emotional. Because of this, she is incredibly good at keeping up the appearance that we are all doing fine and everything is hunky-dory and this is just something we have to do. No person in their right mind would think that what is going on is fine. We have just both adopted a single principle….

4. Fake it ‘til you make it. We are living our lives under the assumption that things will work out in some reasonable fashion. We have no promises. We have been in the position of packing up baby stuff before. If we let the thought of losing him in, it will take complete control of our minds and our lives and we would not be able to function, think, put one foot in front of the other, or remember to take our next breath. We simply cannot live like that and we are not going to allow it. That doesn’t mean that every moment you see us is not a constant battle to keep going, to wake up and go to work so that we can provide for ourselves, Evelyn and Rowan.

Doc

Things Keep Lining Up in Our Favor

 

^{I have said quite often through this experience that we could not be in better hands.  We’ve been lucky enough to find out early, do some diagnostic imaging, plan for success, etc.  I even heard great things about the surgeon in town.  So today I thought I would look into him a little bit more.  I read this in an article today when I searched for Dr. Nikaidoh, the surgeon who is likely going to be doing Rowan’s repair work:}

The optimal surgical management of patients with transposition of the great arteries with a ventricular septal defect and pulmonary stenosis remains challenging. When compared to other surgical options, the Nikaidoh procedure results in a ‘more normal’ anatomic result, with better alignment of the right and left ventricular outflow tracts. Also, the pulmonary outflow is less likely to be compressed by the sternum, a major issue associated with the Rastelli repair. This technique is especially useful in the presence of an inlet or restrictive ventricular septal defect, a hypoplastic right ventricle, a straddling atrioventricular valve and/or anomalous coronary anatomy interfering with a distal right ventricular outflow tract incision. ^{(http://mmcts.ctsnetjournals.org/cgi/content/full/2008/0220/mmcts.2006.002337)}

^{I became extremely emotional when I read this.  I had no idea that the procedure the surgeon who will be helping our son developed had anything to do defects that Rowan has.  You might think that there can’t be that many heart defects in children, but there is quite list.  I hadn’t read much on the surgeon yet and decided to try to during my daughter’s naptime.} 

^{My pediatric cardiologist said there wasn’t much point to meeting with a surgeon until after Rowan gets here, but I am beginning to wonder if my husband and I wouldn’t both feel better if we did.}

My First MLH Meeting

Tonight I went to the September meeting of the Tulsa Mended Little Hearts chapter.  I had three goals.

1. Don’t cry.

2. Learn something

3. Make friends

Happy to say that I accomplished those pretty darn well.  I was worried that being at that meeting would make everything seem much more real than I wanted it to be.  I was worried that it would completely obliterate my use of denial as a coping mechanism.  I was worried I’d hit a sudden wall of panic.

Come to find out, I didn’t feel that way at all.  Apparently I have been done with denial for a while.  I really  have accepted that this is our situation now, and that Rowan will endure more than any little man should have to.  The truth is, I instantly felt like I belonged around this group of families.  It’s scary, and hard, but the support that comes from having someone who has walked in your shoes telling you that you will not be alone through the journey ahead is very humbling.

I introduced myself, Rowan, and shared his due date, shared his heart defects, and realized that I felt proud to talk about my son.  Sure, his defects suck, but I am excited about his arrival and already feel proud of my little man. Goal #1 accomplished.  No crying during the meeting.

The speaker at tonight’s meeting shared his take on the importance of organic food, detoxifying your life as best you can, and cautions about vaccinations.  I think being a doctor’s wife and being in the education profession, if someone doesn’t provide articles and sources in a presentation, I don’t give their information much credit…but his audience was not one that I think would demand abstracts.  I loved his take on organic food and toxins in our environment.  He basically emphasized that if our body isn’t wasting energy and resources purifying the crap we don’t need but are exposed to, it can spend more time focusing on healing and repairing itself.  Makes sense.

Vaccinations are still a tough issue for me.  I see the point in spreading out vaccinations and not loading 5 vaccines into one shot, but I struggle with the idea of NO vaccinations.  Post op Rowan doesn’t need to try to fight measles, or the flu, or anything else if he doesn’t have to.  I will have to talk to our pediatrician/pediatric cardiologist about the vaccinations given at birth and whether or not postponing them is in Rowan’s best interest. So goal #2 accomplished – learned a few things, decided to continue investigating a few others.

At the end of the meeting I talked to a few of the other parents.  I friend requested one of them that I talked to for almost an hour in the parking lot.  Goal #3 accomplished.

Amazing meeting – amazing group – I’m pretty excited to take my husband with me to the next meeting.  This is a support group that is active.  They support parents, they raise awareness, and they educate one another.  I think all parents need a group like this, CHD or no.

Doctor’s Appointment

I saw my OBGYN today.  I was a little panicked yesterday because the person that was going to go with me today had to back out last minute.  Luckily, my dad was able to watch the girls so my mom could go with me.

Every appointment we’ve had a little more bad news, and I’m still worried that I’ll go to one and get more bad news, or have to make decisions, and I don’t think I want to do that alone.  It was wonderful to have my mom there to support me.

I’m happy to say, NO bad news today!  I’m up 8 pounds in the last month (WAHOO and thanks to the JWI ladies who feed me way too much).  The last growth scan we had, Rowan was measuring about a week small, which is nothing to be concerned about.  Today he measured a little over a week bigger – which is fantastic!  He’s growing like a champ!  We want him a very healthy weight when he gets here.  It gives him a much higher chance of surviving the surgeries he’ll need.

My OBGYN is STILL waiting on a report from the Pediatric Cardiologist.  I am STILL waiting on a referral from them so I can visit the NICU and talk to a Neonatologist, so hopefully between her office nagging and me nagging, something will get done.

My OB also told me that she is on call for her patients at St. Francis 24/7, so as long as she is in town (which she plans on being) then I will have a familiar face there when Rowan is born.  She also told me that it’s basically the 3rd trimester now, so it’s time to start buying that baby stuff.

Yes ma’am!

We have been putting together a Wish List for Rowan.  Many of our friends and family have asked about gifts and what he’ll be able to use.  Based on what we’ve been told by the Drs, we’ve put together an Amazon Wish List (link underneath information links on the right).  We’re ready to start stocking up on things he will need.

A Phone Call

I was very excited today to get a phone call from Susan of Mended Little Hearts, Tulsa Chapter. 

She called to talk with me and get to know me a bit as well as to invite me to one of the upcoming meetings.  I was so surprised how easy it was to talk to her.  Something about knowing that I am talking to someone who has already walked in my shoes and is several years further down the path than I am was incredible.  She assured me that if we wanted her there when he was born, or for his surgeries, or just a visit in the hospital while we were there – that I would never feel alone.  There would always be someone who completely understood right there for us. I’d been a bit skeptical about joining any sort of support group – but this group is more than just support.  They promote Congenital Heart Defect awareness and they educate each other.  There are also several dads and grandparents in the group.

My husband is on call for their upcoming September meeting, so I will be going it alone.  They have informational speakers at each meeting as well as some time to get to know other members.  A lot of people bring their children and there are a few women that play with and watch them during the sessions.  While I’m excited to meet the other parents and learn more ways to help my son, I am extremely excited to see little children with heart defects who have celebrated birthdays.

Every triumph story has made such a difference for me, but seeing triumphant stories running around – that could be incredible.

Officially in Tulsa for at least the next 5 months

Well, we reached viability.  This means that it is now possible for Rowan to survive if he is born.  This also means that I am not leaving Tulsa again for quite sometime.

If anything even minor happens (fender bender, for example) I am to go to St. Francis Hospital in Tulsa to get checked out – so I have to stay close to it.  Before it was just ill-advised to be far away, now it’s against the rules.

So no more trips to visit family.  Which sucks since I would love nothing more than to go meet my new niece or visit my brothers in Texas.  It was comforting to take those weekend trips when my husband worked all weekend.

I also have to carry around that lovely photo of Rowan’s hypothetical heart so that I can show any EMSA personnel that image and tell them that they HAVE to take me to St. Francis.

There are laws that require you to be taken to the nearest hospital.  My pediatric cardiologist said that I needed to carry that image to show them so they’d listen to me when I told them that that particular law does not apply to me because I need the level 3 NICU.

Kind of a hard for one who likes to travel around – hard to be restricted BUT

This means that we are only 16 weeks AT MOST from meeting our son.  And I know those weeks are going to fly.

Mended Little Hearts

Mended Little Hearts is an organization that focuses on providing information and support to families who have been touched by congenital heart defects.  A co-worker mentioned this organization to me and it turned out to be the one advertised in the Pediatric Cardiologists’ office as well.  So I looked into it.  Their website is now added to the resource links on the blog main page as well.

I was actually amazed at this organization.  They match families whose children have similar defects or will need certain surgeries so those of us who are trying to figure out what is going to happen to our child can talk to someone whose child has already gone through it.

So, I filled out a membership request form and a matching families form.  In a few short weeks we will receive information about group meetings, services such as phone calls and hospital visits by trained volunteers, and if we’re lucky, we may even hear from a family nearby who has a child who survived similar heart defects to Rowan’s.  Congenital heart defects vary so much that it would be incredible to find someone similar and hear their story!

What My Son Has Taught Me

Coping with a pregnancy for a child that has a known onslaught of congenital heart defects seems like a very grown up problem.  I don’t think we ever feel like we’ve “grown up”.  Inside of us is still a child.  Most days I can be a strong and confident mother who believes this will all be alright and my son will persevere.  But, the child in me can be very panicky some days. And every time I have reached a moment where I don’t have the strength to stay positive any longer and the complete fear of watching my son die hits me, something amazing has happened.

As soon as the tears come, Rowan fights.  He kicks and punches and rolls hard and deliberate.  It is as if he is trying to get my attention and remind me that he is in this fight too.  And he is strong.  One of the amazing things about being pregnant is that you are never alone.

23 weeks and his kicks are painful already.  Looks like we have a fighter.

Planning a Trip to the NICU

Today I started the ball rolling on trying to get an appointment with a Neonatologist (NICU doctor) and a tour of the NICU at St. Francis, where Rowan will be born.

I’m constantly amazed that you can be surrounded by wonderful doctors and highly confused office staff.  My doctor told me to call the NICU, they told me my doctor’s office should have faxed records and I shouldn’t have called.  The person I talked to was very good at repeating one phrase and not being very helpful about it, but then someone took the phone from her and was much more helpful.

So now, I am waiting for medical records to call me back so I can get my Pediatric Cardiologist records sent to the Neonatology Unit so they can call me back and schedule an appointment.

They only schedule 1 appointment a day. Monday through Friday.

I am crossing my fingers that the appointment they schedule for me will be one that my husband can go to…and will be before Rowan is born.

To the incredibly nice woman I talked to second on the phone in the NICU, thank you for being so calm and patient with me. 

After the Pediatric Cardiologist

Highlights from the Pediatric Cardiologist

First of all, our appointment was at 10:00, we arrived at 9:30 and left at about 1:00.  During our time in the waiting room there was another pregnant couple who was freaking out because their kid has a small hole between the ventricles.  That’s it.  I kind of wanted to punch them because I was sitting there trying to keep it together terrified they were going to tell me that my son had no hope today – and their kiddo is fine.  The doctor came out said “Your baby is going to be fine.  Don’t even worry about this, it’ll most likely fix itself and won’t require surgery – maybe medication”.  Have that talk in your office!  It pisses those of us with really freaking screwed up kids off….

That said-

This appointment was not what I had expected.  I thought we were just going to meet with the doctor and discuss all of the tests that had been done so far.

Instead, they did a study, which was an ultrasound/echo that took about an hour to map out Rowan’s heart.  The result is what they used to give us a picture of what Rowan’s heart looks like.  So here are the highlights.

• Hypoplastic Right Heart – the small ventricle is however connected to the left ventricle through a really big hole (called a VSD) that means it is receiving blood flow.
• Transposition of the Greater Vessels – the Aorta and Pulmonary Artery are switched at where they should plug in.  It also appears that the Aorta is slightly smaller than the pulmonary artery.
• A GIGANTIC connection of the Pulmonary Artery and Aorta.  The picture shows that it’s larger than normal…but the doctor said it’s actually bigger than the Pulmonary Artery.
• Undeterminable completion of the Aortic Arch – this was the scariest thing.  We cannot verify that he has a complete Aortic Arch, and without that, he would need a transplant to have any hope.  They do not really have a reason to believe that there is a problem, they just cannot prove that it is okay right now and will not be able to until he is born.

What all of this means:

• His defects actually create enough open blood flow that it is possible he could be balanced out enough to not need the NICU and come home after he is born to wait a while for surgeries.  His heart has compensated remarkably well for the HRHS, which most likely started this whole mess.
• He will need a ton of testing when he is born for us to determine the best surgical course for him.  He will still require surgery regardless of how stable he is when he is born.
• No C-Section or scheduled induction is necessary – the Docs will all be in town and they have no issue with a vaginal delivery!  This means I am much more likely to be able to visit the NICU and see Rowan if he needs to be there.
• Upcoming visit to the NICU – she suggested we tour the NICU, just so if we do need to be there, we are somewhat prepared for what we will see.
• The later he is born the better!  My due date is Dec. 16th and we want to be as close to that as possible.  “Full term” is often defined by OBGYN’s as 37-38 weeks.  Pediatric Cardiologist will always define it as 40.

All in all, I wasn’t expecting good news.  I had given up on the idea that I would even get to hold my son before surgeries and knew there was very little that I would be able to see him.  I had resigned myself to spending Christmas living at the hospital and several weeks away from my husband and daughter.  The fact that there is even a slight possibility that I could hold him and nurse him and take him home is overwhelming.  All I want for Christmas is a miracle.

A Normal Fetal Heart vs. Rowan’s Fetal Heart

Here are two pictures of fetal hearts.  The first is a normal fetal heart.  The second is a rough sketch of what Rowan’s looks like.

For those of you who understand much about anatomy, Rowan’s aorta is NOT as small as it looks in the picture.  It is smaller than the pulmonary artery, but not nearly that much.  It still serves as usable tissue to use in surgeries later.

What you see is 1.) The hypoplastic right ventricle; 2.) A VSD, or hole between the ventricles; 3.) Transposed Greater Vessels; and 4.) a question mark because we cannot see the entire Aortic Arch thanks to that little vessel by the 4 being gigantic.

Pediatric Cardiologist Tomorrow

My first attempt at a video blog on what I’m thinking about right now.

Within Each Heart

Within each heart there are 4 chambers.  The right atrium, right ventricle, left atrium and left ventricle.  The right side of the heart receives poorly oxygenated blood from the body and pumps it to the lungs so that the blood can receive oxygen.  Then the oxygen rich blood flows to the left side of the heart and is pumped out to the body so that all of our muscles and organs can receive the nutrients needed from the blood stream.

Within Rowan’s heart there are 2 normal sized chambers, the left atrium and the left ventricle. The right atrium and ventricle are tiny and missing a valve. They cannot affectively pump blood to the lungs.  This is called Hypoplastic Right Heart Syndrome.

Within each heart there are major vessels and connections that are tubes which move blood either towards or away from the heart.  The Superior Vena Cava and Inferior Vena Cava are veins that bring poorly oxygenated blood to the right side of the heart from the upper and lower parts of the body.  Blood moves through the right side of the heart and into the Pulmonary Artery.  The Pulmonary Artery is the tube that goes from the heart to the lungs.

Within each heart there is a Pulmonary Vein that oxygen rich blood flows through as it returns to the heart, the left side this time.  The left side of the heart then pumps blood out through the Aorta and to the rest of the body.

Within Rowan’s heart, the Pulmonary Artery and the Aorta are plugged into the wrong place.  Blood from the right side of the heart pumps to the rest of the body instead of the lungs, and likewise, blood from the left side pumps to the lungs instead of the body.  This is called Transposition of the Greater Vessels.

What is incredible is that this is not a death sentence.  This is something that can now be surgically fixed thanks to the work of many dedicated cardiologists and surgeons.  Rowan faces a rough journey, but I look forward to the day when his teacher can begin her “Within Each Heart” lecture and he can raise his hand and say “Except Mine” and know that within his heart is an incredible machine that may not follow the lectures we all heard, but is unique unto him.

Pathway to Peace of Mind

Original post date – August 8, 2011

Well, I decided I was done throwing my pity party – though I fully believe I was entitled to it.  I’ve got my war face on and I’m ready to approach this with the strength and courage that is necessary.  I haven’t shed a tear in 3 days and I am starting to enjoy being pregnant again instead of feeling like I’m a time bomb for disaster.

The right frame of mind can make any struggle bearable.

So for those who find themselves in a situation where they don’t know how to handle what has been given to them, here’s what helped me out.

Fake it ‘til you make it – talk to other people about your situation in a positive manner.  Don’t let those “what ifs” seep into conversation.  My baby is going to have some time in the NICU but it’s amazing what doctors can do today and we have an incredible team assembled.  It will be rough, but he’ll be fine!  My son will be trying my patience before I know it!  You say it enough, you realize you truly believe it.

Zen your home – keeping my house clean, throwing out trash, listening to quiet music, keeping the TV off as much as possible, keeping the lights dim – all things that create a copable atmosphere where you are much less likely to be totally overwhelmed by something and journey back to “what if” land.

Make jokes – if you can joke about it, it’s going to be fine.  Doc and I have made many a jokes about Rowan later in life – about how one day he might get married and swear to love someone with all of his donor’s heart for as long as his body doesn’t reject it – or about how we’ll tell him to stop doing everything so “halfheartedly”.  Is it kinda inappropriate?  You bet!  Bet making jokes like that helps you really believe that you may get to a point in your life where those jokes are okay.

Plan for success – focus on what you need when everything goes right, and plan like it will.  Don’t play the “what if” game and let it keep you from doing what you would normally.  I will still have my shower at work that the dear ladies throw.  We will still do maternity pictures, and I will still light up and beam with joy when people ask me how far along I am or tell me how beautiful I look.  AND Doc will still roll his eyes when I get super excited at little boy clothes.  I’m so excited to meet my son.

Appreciate those around you who are amazing right now, forgive those who aren’t – not everyone knows what to do in these situations.  They don’t all understand that you don’t know what you need help with and they just need to take tasks from you and do them, or that they need to check up on you and let them know they care frequently because that support is invaluable.  Be blessed to have friends and family that do leap in and understand that just because some don’t, doesn’t mean they wouldn’t…it just means they don’t know what to do, and when you get better at asking for help, they will be there!

Forgive yourself – you aren’t at your best right now.  Don’t expect yourself to be.  Forgive the laundry you forgot about or the one time you yelled at your child because you were overwhelmed.  You are allowed to have moments of weakness.

We meet with the Pediatric Cardiologist Thursday – we will have a shopping list and game plan ready at the end of that meeting.  I’m excited to be meeting another part of the team and I’m going into this meeting with a peace about our situation and a readiness to prepare.

F M L

Original post date – August 3, 2011

Well, good news yesterday, bad news today.

My little man likely has Transposition of the Greater Vessels. This means that it looks like his Pulmonary Artery and Aorta might be hooked up to the wrong sides of the heart.

There are some problems that come along with this, but essentially what we understand this likely means is that his first surgery will be much more complicated, but that surgery will fix the arteries. This is still fixable, just a little more intense.

I'm clinging to the fixable. I can withstand all of this is I can still hold out hope that he will be okay in the end. The only problem is, every little obstacle that shows up makes me feel like that hope is slipping.
Once again, when we meet with the Pediatric Cardiologist on the 11th, we are hoping to have some more answers. I'm starting to wonder though, if this will require us to visit another city for our delivery and for Rowan's surgeries.

I had a bit of a breakdown today. Thank goodness my mother is here to help. She is taking care of Little Bird while I get my shit together. Doc told me today that I need to let the people in our lives take care of us for a little while so we can take care of Rowan. I'm trying to accept help and not let it make me feel like a failure.

Thank you to my wonderful coworker who decided to decorate my classroom for me and to the ladies who arranged all my furniture in my classroom.

Never Been So Happy To Have A Nurse Call!

Original post date – August 2nd, 2011

Because they call when tests are normal!

I think it was worth all of the horrible discomfort from the Amniocentesis to know that Rowan does NOT have Down Syndrome or any other DNA problems associated with heart deformities that they tested for.

He’s also 100% a boy, as if the giant thing between his legs didn’t make us feel confident enough at the ultrasound.

So, I have ever reason to believe that Hypoplastic Right Heart is what we are dealing with, and the only major obstacle we foresee.

So I’m off to create an Amazon Wish List!  He will only be able to use certain things in the NICU and with his scar/monitors, so we are holding off on buying much until we get a list of what he can use from the cardiologist/NICU staff.

I tell ya what, I have never been so damn excited to get a test result back.  First good news in a while and it feels great!

Fetal Echo and Amnio

Original post date – July 27, 2011

Today we returned to the Perinatal Specialist who preformed our ultrasound last week.  This week, they did a Fetal Echo of Rowan as well as doing an Amniocentesis on me.  The Fetal Echo mapped out Rowan’s developing heart and looked at the direction and strength of blood flow.  This will hopefully give the Pediatric Cardiologist a better understanding of Rowan’s specific case with Hypoplastic Right Heart.  The Amniocentesis was a bit of an ordeal.  Once the needle went in, I started having contractions, which is not horribly abnormal, but is horribly uncomfortable.  They had to dig around with the needle a fair amount to avoid problems and I am feeling incredibly sore now.  The purpose of the Amniocentesis is to look at Rowan’s DNA.  Some heart defects are a result of a chromosomal abnormality, and we want to make sure that is not the case with him.

We don’t know when we’ll get results back from these tests, but we signed  a medical release so the results could be faxed to us and we will have the reports to read over ourselves.  I also have an OB appointment next week, at which point I imagine we will discuss some of what we know.  I still think it won’t be until we meet with the Pediatric Cardiologist August 11th that we have real answers – and they will probably be vague.

Rowan looks like Little Bird, but slightly different.  I can see so much resemblance.

The more I have read about other families and their experience, the better I feel about our chances.  We have an amazing team working with us giving us ever chance of having the best possible outcome.  It’s just hard not knowing what exactly the best possible outcome is.

Coping with a Kid

Original Post Date – July 25, 2011

Children are highly intuitive.  This is one of the hardest things for me right now about being a mom.  I am feeling much more optimistic about Rowan’s future and the future of our family.  However, there are still times where I feel so overwhelmed I can hardly keep it together. 

Reading a book with Little Bird where she points at the baby on the page, and then points at my tummy and says “BABY!”

Seeing Rowan’s clothes in a box in our room.

I just get teary – and when I’m alone with Little Bird, me being upset translates to her being extremely unsure of her environment. She cries more, feels less comfortable being in a different room than me, wants me to hold her more often (which is not okay for me to do anymore).

I keep reminding myself that I have to stay calm for her.  I don’t ever want to make a child deal with adult problems.  This is something she will have to deal with when Rowan arrives and should not have to deal with it now.

So -

I’m cutting myself some slack.  We’ve been cuddling up watching movies together.  We take our time getting things done right now and try not to be in a rush so that I don’t get stressed.  If I do get upset, I tell her “Mommy is sad today, but it’s okay to be sad sometimes.  Let’s go get a drink/build some blocks/sing a song to help us not be sad.”  I’m putting less pressure on myself to be supermom in the next few days, and just letting myself be “mom”.

Humble

Original post date – July 23, 2011

The last few days have been emotionally very difficult. Many of you know that Doc and I experienced a miscarriage with our first pregnancy. At that time in our life, we did not have family nearby who could offer support. Our friends did not understand the weight losing a child could hold. When we first received news about our son, I never expected to have such a different experience.

We have been so grateful for the overwhelming promises of support and outpouring of encouragement and love from friends and family. All of your calls – flowers you sent – trips you are planning to be with us – scheduling to be here for us in December and March when we will need it – it has been the most heartwarming, comforting, and humbling thing I have ever experienced.

You are giving us the strength we need to get past the heartache and move into the place of preparing, finding peace, and believing that despite how hard the coming year will be, we will not be alone.

Thank you. You have no idea what this has meant.

For those of you who have been asking what you can do now – we need the encouragement you have given, and often – so please, keep it up. We need the reminders that you will be here and we will not be alone. We need the diversions of visits or invitations to remind ourselves that life can still be normal-ish. And if you know anyone who has had a child go through something similar, we’d like to hear their stories.

The Diagnosis

original post date – July 22nd, 2011

Our son has what is known as hypoplastic right heart syndrome. We are looking at a lot of testing in the near future to figure out what our exact situation is.

Our current best case scenario is that when he is born, he will be taken into his first of 3 open heart surgeries. 1 at birth, 1 at 3 months, 1 at 4-5 years. If we are lucky, that will be it. Some of the children with this heart defect will require a heart transplant sometime between the ages of 15-30.

I’m terrified.

I can feel him stretch, and kick, and wiggle around just like a normal fetus. But he will not be able to survive after birth without serious interventions and a likely long stay in the NICU.

We are summoning our courage. We will learn all we can. We will prepare. The road will be rough ahead, but we have to find the strength to be guides to our daughter and to our son. We have to teach them strength and courage and love.

To my son -

We love you. We will be your strength and comfort. You will never be alone. We will have you and hold you. You may be in the hospital for a while, but you will come home. You will grow. You will crawl. You will walk. You will never play football, but let’s face it…we knew that already. You will live a normal life with a few extra doctor visits and a few surgeries. We will get through this.