Heart Day

Yesterday was Valentine’s Heart Day!  It was really cold here, just like it had been for the Sweetheart Run in Tulsa Feb. 11th!  Rowan had several supporters show up to run for him in Tulsa and even a family in Abilene, TX who ran on Feb 14th.  Here are a few pictures of the people who went “Running for Rowan”.

 

 

 

 

 

Thank you so much to those of you who showed support for our family by trudging the distance this Heart Day Season.  The Run raises money for a summer camp that is staffed by nurses for surviving heart kids.  It’s a wonderful cause!

ALSO – Thank you so much to the CICU staff here who helped Rowan make a Valentine’s Present for us.

I hope all of you were able to spend some time with the ones that matter to you in life.  Valentine’s Day has never been a holiday I cared much for – but celebrating it with family has been wonderful.  Next year, we will celebrate with both of our children.

 

Happy Valentine’s Day Evelyn – We miss you!

More Pictures!

So now that Rowan is like a new baby breathing and making noises and able to move around – we’ve been taking a lot more pictures.

AND now that I’m fidgety as all get out, I decided to post some to try to occupy my time.

SO ----

Here is me, holding Rowan in my lap working on pacifier technique. In case you’re wondering, the little things on his chest are just EKG lines.  They’re stickers that monitor his heart.  His arm has a blood pressure cuff on it, and his leg has an IV.  The yellow tube is his feeding tube.

 

 

 

Here is Rowan sitting up in his car seat.  We’ve been trying to get him used to sitting in various positions…car seat included.  We want to be able to comfortably sit him up as we progress with feeds.  We only made a few jokes about how he looked very comfortable and we were fine with taking him home right now.

 

Rowan also has a Boppy he sits up on.  He likes this because he can see Mom and Dad and his animals when he sits up.  He’s very observant…for a sedated 2 month old.

 

 

 

 

We also spent some time doing “tummy time” today.  Rowan wasn’t a giant fan, but Evelyn wasn’t when she started either.  We let him hang out for a while and then gave him a break.

 

     Look at that hair!

 

 

 

 

And this ladies and gentlemen, is the money shot.

 

A facial expression truly indicative that this child…is ornery. And ours.

Better is Harder

Even though it seems backward, I am much more of a nervous wreck now than I’ve been most of our stay here.  Every cough makes me nervous. I get really upset when Rowan cries.  Any noise that is new or funny face he makes freaks me out.

Today they ordered feeds to start.  They ordered this around 8 AM and it’s 3 PM and food hasn’t arrived yet.  Which is normal.  We’re lucky if it shows up by 4 PM normally.  But today, it’s driving me nuts.

I’m close to tears almost all the time.  I’m antsy and torn between feeling like I can’t handle the hospital and feeling like I can’t leave my little man’s bedside for even an instant.

Know what it is?

It’s because someone with a medical degree said the word “home”.

That word has seemed unobtainable so often that hearing it said as if it is a reality has made me think about how long we’ve been here and how incredibly difficult this has actually been.  You tough it out because you have to and because you’re going to be here for a long time…but when the end is near, it’s hard to stay tough. 

It’s like the Riverside Bridge on the How the West Was Run 5k.  You don’t feel like you can make it…even though you can see the finish line.  But you keep telling yourself that it’s just a little further and you can do it! 

Home.

It’s just a little bit further.

He can do it.

To Go Home

Well, we just talked with Dr. Doctor.  To go home, Rowan needs to get food into his GI tract, not throw it up, and get it out the other end.  During that he cannot have the effusion come back.  This is the goal for the coming week.

If he is doing that by the end of this week, which we should know Friday-ish…he may be ready to go home.

Home can mean two things.  It can mean a transfer to Saint Francis in Tulsa…or it can mean HOME.

This means that we could be saying good-bye to Saint Louis around February 20th.

I know I should be cautious about getting excited, but I’ve been away from home, and my daughter, and my bed, and my friends and family for TOO long.  I think when you can see the end of the storm ahead…you get “horse-to-barn” syndrome (can you tell I’m from Oklahoma?) and start to chomp at the bit.  I’m hoping that these feeds go well…and we get the heck out of  Dodge  St. Louis.

Learning to Eat–Day 1

Yesterday we began Rowan’s journey to food.
We think of eating very simplistically, but seeing as Rowan has never eaten anything using his mouth – you can’t start with a bottle.  You have to start very slowly.
So Speech Therapy came by.  That’s right, Speech Paths and Speech Therapists do way more than I realized.  We were told to start getting Rowan interested in taste and to work on getting him to suck on a pacifier.
Seems instinctive that a baby would suck on a pacifier, but when you’ve had a tube down your throat forever, it’s a little more difficult.  So here is what we do several times a day now.
Step 1: Pour breastmilk into a cup and dip the pacifier in it.

Step 2: Rub the pacifier along Rowan’s bottom lip.  Wait for him to open his mouth.

Step 3: Allow taste of breastmilk to sit on Rowan’s tongue so he gets used to have some sort of taste in his mouth.  If he tries to suck on the pacifier, let him.  If not, keep pacifier at a comfortable place in his mouth and let him feel it.


The first time we did this, we had about ten minutes of wide open mouth and NO real attempt at sucking. The second time, we noticed that he was centering the pacifier in his mouth and clamping down a few times.  The last time we got a good 5 solid seconds of sucking out of him before he accidently pushed the pacifier out.
So today we are going to do at least 4 ten minute sessions while he is awake and see what happens.  Tomorrow they are going to likely start giving him food through the NJ (that yellow tube you see on his face right now) to get his digestive system working again and ready to eventually receive food from his mouth instead of a tube.

Rowan’s Room–a Tour

We are in the CICU annex now, which means that Rowan is the least sick of the kiddos and on his way to transitioning to the regular hospital instead of intensive care.

His new room is very different.  We are thrilled to be on our way to getting out, but also trying to cope with the fact that Rowan now has roommates (we’ve had two already) and that our personal space in the room has been greatly reduced.

BUT – here is what his area looks like!

 

The curtain is the boundary for his half of the room.  I would like to say that while for normal children, the bed is for sleeping and toys should never be left there…Rowan lives in his bed and is constantly monitored, so that’s why it’s okay for him.

Rowan is supervised when we are away by his friend, Ezio – who is always keeping him in line.

He also has a few balloons.  A “Congrats” from the CF nurse for being extubated is his newest addition.

He also has a Noah’s Ark Mobil that was donated by one of the families who had a child in the CICU a while ago.

He has a banner with his name from his Grandma and Grandpa and a heart valentine that Evelyn made in the playroom here.

So we try to make Rowan’s little space his own.  He gets to play with rattles and a crib mirror from time to time now.  We can hold him whenever we want to.  It may be a tiny little space, but we make it work. 

Nothing Is Ever Easy

Weaning sedation medication has been put on hold while we try to figure out Rowan's blood pressure issues.

They've been trying to switch him to an oral medication, but he keep fluctuating. His pressures get too high, so they turn the IV med back on and up the oral med, then they get way too low so they turn the IV off. Trying to adjust may take a few days, but we have to get him at the right management level on medications he can take at home.

His blood pressure fluctuating so much with the meds could be just that - meds. It could also be a few other super scary things I refuse to acknowledge until they tell me they suspect for more reasons than "let's list everything this could be to make sure we aren't missing anything".

So today (and probably a few more days) will be spent on fixing cardiovascular issues. In this world we do a lot of "one thing at a time", so once they get this done, they will switch over to weaning his meds. They want to make sure that his heart/circulatory system are working well before they add feedings or anything else.

It's hard to have two days with amazing changes and be promptly reminded that we are no way done. Because of the stress of changing blood pressures, Rowan has a little tube that pushes air through his nose in to help him out. It's barely doing anything, but hard to see when he was fine all by himself yesterday.

We had to send Evelyn home. In the new transitional room he is in there is barely enough room for my husband and I to sit, and certainly not enough for Big Sister to stand, draw, read books, or even watch a movie - so she can't really visit him anymore. We're both really down about saying goodbye to Evelyn for a while but are trying to remember that this was a step towards home that needed to happen.

We are going to talk with the doctors about what the future looks like for us. We want to know if we will need to be back in St. Louis in June for Rowan's next surgery. We want to know if it is possible for us to transfer back to Tulsa for the remainder of Rowan's recovery once his current blood pressure debacle is finished.

Rowan is 2 months old today. He weighs around 11 lb 4 oz.

Two Month Developmental Checklist I Googled:

 You makes sounds like “aaaaa” and “eeeee” when I make those sounds to you. - Check
 You smile when I speak to you. - nope
 You like toys that make sounds. - do your pumps/monitors count?
 You lift your head and shoulders up when lying on your tummy. - Um...we'll figure this out when we can let him lay on his tummy.
 You hold your hands and feet. - when they aren't restrained or attached to IVs? You do hold your hands sometimes.
 You try to hold small toys with your hands. - Does trying to yank out tubes count?

Nothing will come easy for this poor guy - except love. He's got lots of that.