Rockstar!

A little bit of music therapy 

We are beyond thrilled with Sloan's progress and strength. We have one tough cookie. In the past 24 hours Sloan has:

• Been removed from the vent
• Was taken off the pacer
• Had her central chest tube removed (her peripheral tubes are still in place)
• Moved out of ICU to the general care floor
• Has been taking feedings by mouth
• Has been weaned from morphine

It's hard to believe that she just hard surgery two days ago. We've got a baby rockstar on our hands!

Yum! Real food...finally!

We've begun to notice Sloan starting to act more like herself again. When she's awake she will talk to us and play with her toys. I keep trying to get a little bit of a smile from her, but she's being stubborn on passing those out.

Next steps from here for us to start thinking about discharge are:

• Getting her chest tubes out. She's still draining quite a bit of fluid so it needs to slow down before they even think about heading out. Tomorrow we'll be able to get her out of bed which will help move around the fluid.

• Get her off the little bit of oxygen she's needing right now. While in ICU they tried to take her off the smidge they had her on but she didn't want any of that. Her saturation's would drop each time they took her off. They plan to try again tonight on general care and see how she responds.

Tomorrow Drake comes for a visit with my parents. Kyle and I are excited to spend some time with him! He's been talking about playing the "light game" since we left here in March, so I'm sure we'll be spending a lot of time on the 8th floor indoor playground.  We can't wait to see him!

All dolled up by the ICU nurses.
Can you believe this is the first time she's had a
bow in all that hair! 

A Real Celebrity

Many people idolize sports figures and those celebrities on the red carpet. To Kyle and I a true celebrity to idolize is this man, Dr Bove.

We owe more to this man than I can ever express or repay. I am in awe of him both as a professional and as a person. While he saves lives on a daily basis, he couldn't be more humble and personable.

Dr Bove, we will be forever indebted to you for all you have done for us and continue to do for us. You are a true hero and one that we will forever be grateful to and hold close to our hearts. Thank you for being the amazing and dedicated person that you are. Because of you, Sloan is with us today and we thank God for bringing you to us.

As for a quick update on Sloan, you can probably see in this photo we are breathing tube free! The tube was removed earlier today around 10:30am.

Quiet Day in Recovery

Since we were able to see Sloan after surgery, which was about 1:30pm, it's been a relatively quiet day.  They placed us in the bay this time around.  The bay is a large area with beds separated by curtains.  They typically place the kids who just had major surgery, like Sloan, here so they are easily able to monitor them and have many staff around for assistance if needed.  Have to admit we were spoiled last time with a private room!  Regardless, the only thing we are really worried about is her getting the best care and healing so she can be back to her happy self in no time.

There have not been any major updates on her recovery, but here is a quick overview:

• Overall I think she looks good!  She's a bit swollen in her face and her incision sites right now look kinda messy from the oozing she had (this was part of the aspirin effect I mentioned in my earlier post). But once they get her off some things they'll be able to clean her up and she'll look great.  I have to admit that it was much easier to see her this time around compared to her first surgery.  Knowing what to expect having gone through it once helped set some expectations for us.
• They started sprinting her (allowing her to breath w/out the vent for a monitored period of time) a few times this evening and if she continues to do well with it, they will remove her from the vent.  They also want to make sure she doesn't have additional fluid build up on her lungs (even though she has drainage tubes).  They said kids after the hemi can have some build up so before they take her off the vent, they want to make sure they know what they are working with.  We are praying when we go in tomorrow morning we'll be pleasantly surprised and see her with no tube!
• They had to begin using her pacing wires as her heart got into a rhythm that was too slow which was effecting her blood pressure.  Her low heart rate is caused by swelling in the heart from surgery so by making it beat a bit faster it keeps her blood pressure more in control as well.
• Kyle and I ended up moving over to the Ronald McDonald house rather then using the hotel.  We figured it would be nice to just be across the street rather than having to drive 15 minutes.  It also is a familiar place, which has given us a sense of comfort.
• Sloan is being her feisty little self and proving once again she doesn't always follow the rules!  She's periodically fighting the sedation and breathing tube.  As she begins to wake up more, she will shake her head back and forth, push up with hear legs and try to reach for all her tubes.  While I love the fight in her, I also have been encouraging her to give it a rest for a bit so her body has some time to heal.  They are giving her periodic doses of additional sedative to keep her calm, but it's a delicate balance as they don't want to give her too much since  that would keep her on the vent longer.  But if they don't get her any, she worries all of us that she'll hurt herself.  Regardless to say, she's making the nurses work for their money today.
• Nana & Poppy (Kyle's parents) came to visit today and got to go in and spend some time with Sloan.  Our friend John also stopped in while Sloan was in surgery.  We have more visitors coming in the next few days which always helps keep your mind off of things.

Today Sloan turned five months.  So to keep with my other updates, I figured I'd give her stats:

- Weight: This morning she was just over 14 pounds - woohoo!  I felt very confident that we did the best that we could to make her nice and strong for this surgery.  I'm so proud of her!

- Personality/Milestones: We've got a roller on our hands!  I had to warn them about that today as she does not stay still!  It'll be interesting to see as she starts to feel better if she's going to try and roll over in her hospital crib.  She continues to put everything in her mouth and her new favorite thing is showing off how flexible she is by pulling her feet all the way to her mouth.  She just adores watching big brother Drake.  He's not the type to stay still for too long so we'll catch her following him with her eyes from one side of the room, to the other, and back.  It's cute how excited she gets to see him.  She's also been making a new signature noise which we call her monster growl.  She tends to pull this one out frequently and then give a big smile afterwards.  It's adorable.

The plan tonight is to keep her calm and work towards getting her off the vent.  They said once she's off the vent they can remove the central line.  Once those two things are gone we can hold her.  I think we all will be happier once we can do that.

Thanks for the continued prayers and well wishes, they are much appreciated.  Sending our love!

Out of Surgery

We just met with Dr Bove and he said Sloan did amazing, he couldn't have expected her to do any better.  He also commented on her amazing head of hair!

She was on bypass for 88 minutes which he said was good.  They had to put in a few extra drainage tubes (1 chest and 1 by each lung) as she was on aspirin (which acts as a blood thiner for her...to avoid any clotting in her shunt) until yesterday so they expect she'll have a bit more oozing from these tubes and from her incision site.  He said they usually stop aspirin a week ahead of time, but with her they were being a bit more conservative which will cause this oozing.

We should be able to see her in around an hour or so and we will update you later today on how things are going.  Thanks for all of your prayers, keep them coming for a quick recovery!

And So it Begins...

They just took Sloan back at 7:30am for surgery.  She was in a great mood this morning, woke around 5:30am and was happy, smiling, grabbing and her feet and rolling around.  It made it a bit easier to pass her over knowing she was feeling good and not scared.

They expect the surgery to last around three hours total and we should expect an updated in about two hours.  We'll keep you posted on how things go.  Keep up the prayers and positive thoughts!

And We're Ready for the Hemi-Fontan

Sloan's cath went well and we've been given the green light for surgery next week!  They said she fought the sedation some, but they were able to get all the pictures they needed.  Dr Armstrong said she's a perfect candidate for the hemi-fontan.  What a relief!  Her pressures in her heart and lungs are great, her pulmonary arteries look good, they did see the shunt is looking a bit small as she's beginning to outgrow it so timing of surgery next week is perfect.

We were able to be with Sloan right after she woke up and held her the four hours during recovery.  She was a bit cranky but was able to get some good naps in while we rocked her.  By the time we left, she was all smiles again!

Thanks for the well wishes & prayers!  Keep them coming for next week as this is the next big step in Sloan's journey.

Successful Pre-Op, Day One

We completed day one of Sloan's pre-op appointments and she couldn't have been a better baby!  Here's a quick recap of the day...

Kyle had to head into work, so Sloan and I were on our own to tackle the day.  We started off with an x-ray in the morning.  As soon as I arrived, the tech asked me if I was familiar with "the chair".  When I told her no, she proceeded to tell me that it's not as bad as it looks, it's not painful, etc.  Well if you haven't seen "the chair", like me, it is quite a surprise to see for the first time.  As she started to show me how it works I told her I think Sloan will hate the arm straps, she then responded "well there is more, most babies hate the chin strap".  What?  I didn't even know there was a chin strap.  We got Sloan loaded in there and I couldn't have been more off with how she would react.  She sat there contently and they snapped two quick pictures and we were done. 

Next up was the sedated echo.  After a quick check over by the Nurse Practitioner we strolled back to the room she'd have for the next few hours.  It had now been about five hours since Sloan last ate (she had to fast since 7am) and I didn't hear one peep out of her...she was beyond a good baby.  After the nurse got her all set up we gave her the sedation meds (she didn't care for this, but choked it down since she was hungry) and I rocked her to sleep.  She had already been showing signs of being ready for a nap so it didn't take long for her to fall asleep. When the team got the pictures they needed from the echo the nurse began to wake Sloan up and she was all smiles again. 

Passed out after her echo

Before we left for the day we met with our cardiologist and went over the results of the echo and what to expect for the next day.  Her echo showed good results - normal heart function and minimal valve leakage.  Dr Armstrong was happy with how she looked.

We'll be back up tomorrow for an early appointment (7am).  It's a big day as she'll have her heart cath.  We are feeling good about it all but of course still have some nerves.  We are hoping to have another day of good results!

So tired after a big day.  One day down, one to go!

Four Months Old

I have realized my blog has gone from daily posts, to weekly posts, now to monthly posts.  So I"ll apologize in advance to those of you still reading this that I don't get on here more to post photos and updates.  However, on the bright side, less posts mean there is less news.  And no news is good news in this household!

Sloan turned four months on May 26th and has continued to do so well.  Her doctors have been very happy with her progress.  We've continued to see her cardiologists every other week and they both have had only positive things to say about how Sloan is doing.  Our last visit to her Ann Arbor cardiologist was quite eventful.  Sloan really had her mommy working that day.  While we were thrilled to hear that her echo showed that her heart function was back to normal and her valve leak was minimal, I think I produced many more grey hairs trying to keep Sloan calm during the visit.  I don't think there was a time she didn't scream  & cry when someone touched her other than me or my mother.  Needless to say, we were exhausted when we got home!  I think as she now really recognizes us, she's starting to get a little bit of anxiety around strangers.  But, I can't blame her...I would hate people poking at me for hours on end as well.

Our most recent visit to our Grand Rapids cardiologist was a bit more low key than Ann Arbor's visit.  I had forewarned them about the episode in AA, but Sloan surprised me and was a perfect baby!  She didn't have to go through an echo or EKG, so that probably helped her stay calm.  During this appointment Dr Grifka mentioned to us before we were wrapping up for the day that she is doing so well during this interstage period and that many babies are in and out of the hospital during this time for colds and such. Kyle and I both felt so fortunate after hearing him tell us this.  She really has been nothing but great since we've been back.

Four Month Stats:

- Weight: 12lbs, 8oz

- Height: 2 feet, 1.1 inches

She's long and lean!  Our pediatrician said she's in the 0% when you look at her weight compared to her height.  She's got tiny little chicken legs like her poppy (my dad).

- Milestones/Personality: Big talker!  She'll coo, ahh & babble with you all day if you do it back to her. It's adorable!  Sloan loves her hands and is either staring at them, shoving them in her mouth or holding them together in front of her.  More recently, she's started to make raspberry noises when she's just chatting away with you.  We've started to catch her rolling over a few times from her stomach to her back and when laying on her back she'll pull her legs up to grab at her feet.  Sloan's an AMAZING sleeper.  A few weeks ago she would wake up once at night to eat, now she heads up to bed after her 8pm meds and most of the time I have to wake up her at 7am in the morning to start her AM routine.  I haven't had to wake up to feed her at night for a few weeks now.  It's great!  (Hopefully I didn't just jinx myself on that one now)

I mentioned in my last post that we'd be heading to AA at the end of the month for surgery number two.  It has been confirmed that we'll be there on June 18 & 19 for her pre-op work (EKG, sedated echo & cath) and then back up on June 26th for her surgery.  I think Kyle and I have been living a bit in denial about it as we both talk about how we aren't sure how to feel.  I know we are going to be a mess when the time gets here and we have to hand our sweet, amazing baby girl over.  But at the same time, we knew this was coming and it's our only option so I almost feel like we have a bit of a determined emotion as well.  It's odd and most of the time I find myself trying to not think about it at all.  Not sure that's the right way to go about it, but it's what is working for me right now.

Here are some photos of the past month to get you caught up.  We've been trying to enjoy getting out for lots of walks and spending time together as a family.  As she gets older it's been heart warming to watch Drake and Sloan interact more.  She just loves watching him and he's been more and more interested in her...singing to her, talking to her and showing her how to use her toys.  It's just so much fun!

Getting ready to head out for a walk.

One of her favorite new toys...the jumparoo!

Another new trick, making funny faces.

She's probably going to hate me for this outfit.

Drake and Sloan, I think they look quite a bit alike.

Discovering new body parts, a knee!

Drake wanted to snuggle next to Sloan while watching
cartoons before bed, it was adorable.

Getting really good head/neck strength.
Now we are working on strengthening her back for sitting.

Her scar continues to heal nicely.
There are some spots that are slightly fading already.