New Year... New Baby...

What a week it’s been!  And it’s not even been a week since surgery.  Ellie had surgery on Wednesday last week and spent Wednesday and Thursday in a pretty heavily sedated state.  On Thursday, they started weaning her off of sedation slowly.  On Friday, we were cleared to start pulling out some of the interventions she’d had – her chest tube and catheter, as well as her arterial line and central line.  They also started her feeds (slowly) and weaned her off of IV fluids and off the nitric oxide machine.  She was weaned off of all pain medications, too… no morphine, no Tylenol.  Friday was FULL of big changes.  Ellie did pretty well, really.  She tolerated the changes well, except for the feed volumes.  Once we were back up to getting her 3 ounces every 3 hours, she was getting sick with every feed.  After 3 consecutive unsuccessful feeds, Ellie was put back on IV fluids to give her a break.  On Friday night, her belly was distended, but soft.  By Saturday morning, her belly was further distended but hard.  Dang it.  Once we stopped her feeds and put her back on IV fluids, we also attached a Ferrell bag to her g tube to relieve any backed-up pressure.  After a little while, Ellie coughed and sent a good once of fluid (heavily tinted with bile) into the Ferrell bag.  So, her belly was upset for sure.  She was able to poop a few times (I know… only moms and medical professionals get excited about poop, right?).  After half of a day of just IV fluids, Ellie seemed to feel better.  I don’t know if the cocktail of medications post-op were too hard on her digestive system or what.  On Saturday, we eventually switched her over to a continuous feed, which she has since tolerated perfectly.  She’s still getting the volume of food she would normally get, but she never has a full belly.  I think we’re going to work toward bolus feeds again shortly. 

Oh, sweet bug!

Our nurse, Katie, playing with Ellie

So happy to cuddly my bug

Daddy and Ellie

Sunday morning, Ellie was transitioned over to the CPAP settings on her trach.  She was no longer on the ventilator.  They planned to do 4 hours on, 4 hours off of CPAP.  However, as long as Ellie tolerated the CPAP well, they would leave her on it.  She has now been on CPAP support for over 48 hours non-stop.  This is excellent news!  She was able to stay comfortable, relaxed and well-oxygenated on just CPAP support all day Sunday and Monday and even through the nights.  This gives us hope that we’ll be able to go home without a ventilator.  In surgical rounds this morning, I heard Dr. Morales say, “Turn down the oxygen on her CPAP… her goal is a trach collar.”  Celebrations!!  So Ellie is doing a trach collar trial for an hour today.  We’re still quite a ways from home… we are still waiting to be transferred to the step down unit (TCC) and once we’re there, we have about 6 weeks of training and adjustments before we can take Ellie home.  Since we’re almost at the 6^th week inpatient right now, to think that we might be halfway through is awesome! 

Dr. Morales said that Ellie will need a heart cath 2 months after surgery, which would be 7 weeks from now… so I’m wondering if we’ll get the cath in before we go home or if we’ll have to come back for that (a week after we go home).  We know that a heart cath brings sedation and that sedation brings another brief stay in CICU.  I kind of feel like it’d be better to just get this done before we go home… but it’s not up to me.  I’d really like to be able to keep our room at the RMH and not have to get put back on a 2+ week waiting list.  We won’t know how effective her banding surgery was until that heart cath in a few weeks.  The ideal situation would show that her resistance has dropped significantly, making Ellie eligible for the next surgery.  That would be the absolute best case scenario.  We know that the more likely (but still very positive) outcome is that we’ll see a decrease in her resistance in 7 weeks, but it still won’t be low enough for surgery yet.  While we don’t know if/how her resistance has changed, we do know that the banding has had an impact on how Ellie feels.  She is more alert through the day – in my mind, indicating that she has more energy and doesn’t have to work quite as hard.  She follows you with her eyes/head as you move around her.  She responds to the sound of our voices and smiles often.  She’s not so pale all the time… she’s now a pretty pink color and gets flushed when she’s upset.  As she lays/sits, she puts her hands together and plays with them, bringing her hands to her face and getting squirrely with her tubing.  She has not had any storming episodes since surgery.  This is a whole new baby.  What a welcome change this is right now!  She’s on sternal precautions for 6 weeks.  So we can’t lift her by the arms or under the arms (we never did this anyhow) and we have to make sure that we “scoop” her when we lift her up.  She’s also not allowed to have tummy time for 6 weeks (she doesn’t like tummy time anyhow).  It is hard to do trach care without putting pressure on her chest… that’s really the only difference we have right now.  She is a happy little bug these days.

Yesterday, we weaned back the oxygen percentage with CPAP and we weaned her off of propranolol (the beta blocker that was keeping her from storming before).  Today, we’ll wean her off of clonidine (another blood pressure med that was used to prevent storming) and hopefully get her down to breathing room air on CPAP.  Once there, we’ll see if the banding really did work to prevent her storming or if they’re just masked again by medication.  Hoping they’re gone, of course. In rounds yesterday, they said that the TCC didn’t have a bed available for us yet, but that it’d be best to wean off of heart medications up here before transferring down, anyhow… so we’re likely going to TCC later in the week (say, Thursday).  That will make our CICU stay a full 4 weeks at that time.  We’ll absolutely be ready for step down!

I got a call last night that melted my heart.  It was a call from some of the high school cheerleaders I used to coach.  They called to tell me that they’d like to do something special in honor of Ellie… they’d like to wear Team Ellie Bug shirts during an upcoming game (January 30^th) and dedicate their halftime dance to her.  I got choked up.  One, because it was so sweet of these girls to think of Ellie and our family (even though I haven’t coached them in two years), and two, this is a game where they play a rival school… and they usually put a lot of emphasis on the halftime performance for this game.  So for them to take that big game and do something for Ellie is so very sweet… what a great group of girls!  And again, I’m thankful and humbled to be a part of a small, tight community.  I just feel like the whole community is embracing our little girl and cheering for her.  Say what you will about small town living, but I couldn’t be more proud to say I was raised in a village… not a town, not a city, surely not a metropolis… a small, rural village filled with good-hearted people who rally around and support one another.  LOVE!!

Thank you all, again, for following along with our story.  We are so touched by the love being poured out over our sweet girl.  Here are some photos of our sweet bug from this past week.

This was PT last Tuesday (day before surgery)

We had several visitors over the weekend.  Here are the boys with the Ryan kiddos.  We also saw their momma (Abigail), Melanie & Jeremy and Trishanda and Jack.  :)

This was one day post-op.  Ellie earned her heart pillow for her 1st heart surgery.  

We'll have her surgeon sign it for her.

Our resting beauty on Friday (2 days post-op).  

You can see her scar here... healing very nicely. 

I finally got to bathe and dress her on Friday - and accessorize with a pretty bow.

Adorable!  Aiden helping Lance cross the street from the hostible 

(that's how Lance says hospital) to the RMH.

I know this is a lot to look at - sorry.  But this is Ellie's chest scar 6 days post-op (Monday).  You can also see where the chest tube was removed (just below her incision).  Her belly button is yellow because we can never get the betadine out of it when we bathe her.  I think she looks fabulous, really.

Pretty Ellie.

Fresh purple polish on puffy little piggies.

She was getting sleepy here... love her!