Making Her Presence Known...

She's baaaaaaaaaaack...

Margaret decided to be naughty during her heart cath today. 😒

Here's the lowdown...

The surgeon was able to re-balloon the left pulmonary artery to about 8.5mm to do a little touch-up.  This is fantastic!  This artery is beautiful and the blood flow looks great through that one.  He didn't plan on doing anything to this side, but he felt it needed the touch-up and we are all happy that he did it.  This artery should be good for quite a while.

When the surgeon went to work on the right pulmonary artery she started to bleed into her lung and they had to stop the procedure for a while.  Naughty.  There was an option of stopping at that point but they wanted to salvage the artery and did decide to attempt placing a stent after the bleeding seemed to cease around 30 minutes later.  Thankfully, he was successful and placed a 4mm stent!  He was hoping to place a larger one, BUT, this is a victory!  We are extremely grateful that a stent was placed - it was very tricky and unfortunately there was a dangerous chance of that artery being lost which would have resulted in another open heart surgery very soon.  That would have been VERY bad.  Thank God we do not have to go through that yet!  Kudos to Margaret's surgeon for working so hard on our precious girl's heart today.

The hope is that this stent will allow Margaret to avoid another heart cath for a few months, and more importantly avoid heart surgery for a while longer.  An extremely optimistic goal would be for the next open heart surgery to fall around her 3rd birthday --- given her history and love for drama, we doubt she will let it go
that long, but we will pray and continue to listen to her body.

Now, what of the bleeding? There will be daily X-rays to monitor the blood in her lung and it should clear up. Right now, Margaret has earned herself a couple days on the CVICU floor.  She will remain intubated and on sedation medications tonight -- totally sucks, BUT she's safe and will be able to be nice and calm through the rest of today and evening.  Hopefully tomorrow she can be extubated but again, only time can tell.  We have to listen to her body.  We all know no one rushes anything when it comes to Mighty Margaret!

Moving forward, we will rely on a few different pieces of information to determine when her next procedure will need to take place:  Echo, lung perfusion scan, sats --- Margaret will likely have sats that hang out in the 80s for her "normal".

Keep praying, friends. This is exactly why we didn't commit to any Thanksgiving plans this year. 😉

Approximate timeframe:
7:30am - Margaret goes back to the cath lab
8:10am - procedure actually starts
12pm - Cardiologist comes out to talk with us about what happened
...waiting to get to see her

Status Change

Today was a big day!  Margaret got switched off of a couple of IV medications and her pain med is now an oral one.  Of course, for Margaret, this means it goes into her g-tube so she doesn't have to actually take it by mouth - guess that's a "perk" of having it!  She seems to be starting to be more okay with being awake, too, but it's definitely still tough.  Child Life brought us some fun toys to play with and help get her moving a little more.  We've also seen PT and OT this week already and both have some good advice for helping get her movin' and groovin'.  

the look of pure exhaustion and maybe annoyance

This morning we got the go-ahead to have her arterial line that was in her left arm removed. 🎉Margaret was super cranky about having arm held straight while removing the line and then extra upset about her arm being held while the bleeding slowed.  She's such a champ.  SO tough.  I'm constantly in awe watching how she goes through all that she has to endure and still manages to flash us that adorable little smirk of hers.  I definitely would have put up more of a fight if I were in her place, but it goes without saying that both her daddy and I would switch places with her in a  heartbeat if it was possible.  Seriously though, look at that face!  How can you not feel terrible when she flashes that look at you...if looks could kill...

new room!

The other big news is that we got moved down the hall!  Margaret is no longer ICU status and that means a new room with a new view and a bit more privacy.  Margaret got switched out of the big bed and into a crib when we got to our new room.  She even played with me a little bit today in between trying to sleep.  

Since her art line is out, that means mom and dad finally get to hold her again (with help from the nurses, of course).  She still has a few lines (in her neck and foot) and is on oxygen.  We weren't kidding when we said weaning will be careful and slow for this mighty little warrior.  Overall we're making some great strides forward and home shouldn't be too far away.  

back where she belongs

On our way home last night "mom guilt" hit hard and a million questions raced through my mind as it felt wrong being home without our leading lady.  One highlight of being home, though, was finding the bows that I had impulsively ordered off Amazon were in the mailbox!  Yay!  🎀 Those of you who know us know that we've been spending our Sunday evenings taking the Dave Ramsey FPU course so it's become a running joke in our house to comment about whether or not Dave would approve of some of our spending...he most definitely would not approve of my ordering of bows but when your infant goes through open heart surgery, you make sacrifices.  😜 We'll make up for it in our August budget. ha!

starting to be interested in playing!

Bumps are normal...

the look of pure exhaustion

If there's one thing we all know about Margaret, it's that she likes to be the boss.  Recovering after major open heart surgery is no simple task and there are bound to be bumps along the way.  

This weekend we encountered one such "bump" and Margaret let us all know that we were being a bit too ambitious with weaning her meds.  Sunday, in particular, was a bit rough.  Margaret struggled with the decreased amount of meds and ended up needing bumps to help relieve discomfort and frustration.  It was hard to see her so uncomfortable and needing more support - seriously, SO hard.  Getting and keeping her comfortable is a priority and yesterday afternoon/early evening we were able to achieve that, thankfully.  Not being able to scoop her up and snuggle her nice and close is one of the most difficult things either of us has ever experienced.  Especially when she flashes that professional-level pouty face that she's quickly becoming known for!

Today, she's been pretty calm.  She actually has been asleep for most of the day - her body is telling us it needs some serious rest!  The plan is to go super slow with weaning her meds and pay attention to what she is telling us each day.  That's ok.  We can deal with slow.  Slow and steady wins the race...🐢

This morning Margaret had an echo and, surprisingly, she slept right through it.  I watched in awe as the ultrasound tech was able to move the wand all over her chest and get the images that they needed all while Margaret kept snoozin'.  This is definitely not typical behavior of her so I kept waiting for her to suddenly open her eyes and start screaming, but it didn't happen!  I was even able to run downstairs and grab a quick bowl of cereal while the tech finished up.  The results of the echo haven't really been explained to us quiet yet.  The echo basically looked just like the one they did right after her surgery.  This isn't necessarily great, but it's better than things looking worse!  One of the cardiologists looked over the images and gave me a little bit of an idea but we will wait until the surgeon is able to examine them and decide what's next.  It's going to take time for Margaret's heart to adjust to the changes that were made to it -- really it could take even months for her body to fully adjust.  That's ok, too...we've got time...😊

we love getting rid of machines!

Margaret has to wear mittens because she keeps trying to pull her nasal cannula out when she rubs her eyes.  She doesn't like wearing them but at least she tolerates them ok.  That pouty face of hers really can tug at your heartstrings and make you feel exponentially guilty, though, that's for sure!  

Recovery update

Margaret has kept us all alert and aware of her every move (literally) over the last 24 hours.  For the most part, she's been relaxing and allowing her body to rest up and heal but that spunky and determined personality of hers has definitely been shining.  She has had a few episodes where she gets really upset/uncomfortable/frustrated and turns blue so that's a bit scary.  Thankfully, yet again, because of the grace of the amazing nurses and doctors, she's been fine and continues to be safe.  

precious little face napping

We knew taking her breathing tube out was a possibility for today but knowing that Margaret likes to make her own decisions we weren't totally sure it would happen.  Well, this afternoon she finally was stable and awake enough to allow the team to extubate her!  She is still on some nitric oxide and a high-flow cannula but it's so nice to see her sweet little mouth without the breathing tube.  Who knows how much she's actually getting since she totally is a mouth breather and I'm pretty sure the flow goes in her nose and straight out her mouth. ha!

always needing to have a hand to hold

Taking the tube out has been an adjustment for her but now that it's been a while she seems to be feeling much better.  There has been lots of uncomfortable cries, which are muffled by her hoarse voice unfortunately.  However, she's allowing herself to give into the sleepy dust and taking some good naps.  A little while ago she woke up and we were able to play with her and read one of her favorite books (thx Great Aunt Maralee! 😉).  For just a few minutes she was distracted by us and really seemed the most "with it" as she has since before surgery.  We are both excited to see how she is feeling in another day's time that's for sure!  

Oh - chest tubes came out today, too!  The next few days should be exciting as we will hopefully start to see more of our spunky little lady's personality shine.  We've warned the nurses... 😜  

Beginning the road to recovery

look at that gorgeous number!

Now that Bill and I have had an opportunity have a good night's rest (seriously so grateful for the Ronald McDonald House!) we feel comfortable sharing a little bit more about where we are at and what happens next.  We are trying to give enough information to give a good picture of what Margaret is going through because of her CHD without sharing too much and getting too personal.  We truly hope we are spreading awareness and helping shine the light on what it means to have a child with a CHD.

The plan moving forward is to take things slow and let Margaret tell us what she can handle. We all know way too well that Margaret likes to throw surprises at us and we are determined to keep those surprises to a minimum during this hospital stay.  I've said it a million times before and I'll say it a million more times: this hospital and the staff here are phenomenal.  It's comforting to know that the nurses taking care of your precious daughter remember her and are excited to see how much she's grown.  

Always with a bow!

The breathing tube will stay in for at least today to help Margaret's body relax.  The pressures in her heart are still not quite where they want them so she's on nitric oxide to help keep her heart from working too hard as a result of the pressures.  This is being very closely monitored.  

Margaret had bleeding that might be concerning for some, but because her team is so amazing and proactive have been working to get that to calm down.  It already looks way better than last night when we first saw her after surgery.  She's had a couple of x-rays to make sure her lungs are clear and there isn't blood flowing into or around where it shouldn't be and putting extra stress on her heart.  All seems well so far and the x-rays have been reassuring.  

Last night Margaret decided to remind us all just how spunky she can be and kept the night nurses busy!  She is definitely a wiggly little lady and ended up earning herself a stronger sedation medicine because she was trying to fight the sedation too much.  Margaret is at the age where rolling around starts to become appealing and one of our concerns going into surgery was how the heck we will keep her entertained and still during recovery -- this is definitely going to be one of our biggest challenges as Margaret does not sit still.  She loves to move and if we blink too fast she will be running circles around us all very soon! (Aunt Jessie - we KNOW you're patiently waiting for that day 😉 ).  Anyways, Margaret seemed to be trying to roll over last night so they made a switch to a different medication and she's relaxing now and being closely watched for wiggles.

Pink piggies!!!!

We hope to slowly decrease vent supports today and maybe tomorrow start talking about extubation.  Only time will tell and Margaret will let us know when she's ready for that.  We do not want her to get extubated too soon and end up needing a heart catheterization or another procedure which would mean being intubated again.  

We will be taking it easy and trying to think of how in the world we can express how much we appreciate the love, support, prayers, good vibes, EVERYTHING that each and every one of YOU has sent our way.  You all rock and we hope you are maybe learning a little about what it means to have a child with a Congenital Heart Defect.  

Photos

I made a promise to myself that I would learn how to use my nice camera when we had a baby.  Well, Margaret is here and I've been working on keeping this promise because Bill and I both agree that we want higher quality photographs of our little lady and family instead of always only having iPhone quality ones.  

Here are some shots from when we were still in the hospital a few days before we were discharged.

And a couple from a trip to the park...*check out that pout! :)

Backwards

Backwards. That's how it feels we are moving. Margaret has had a few more arrhythmia episodes over the last few days. 2 were not a concern according to the doctors as they were very brief and something about the rhythm being ok, but one was similar to the one she had last weekend and she needed to have medical intervention to come out of it. Terrifying. Seeing your 2 week old intubated and so many doctors and nurses rushing around her in the room. Again. 

We were moved back to the intensive care area of the unit - backwards, literally down the hall and we have one of the rooms closest to the OR now. ☹️

The plan for now is for Margaret to have surgery on Monday and have a permanent pacemaker placed. 

Margaret's medical team all continue to be so amazing and we can really tell that they all love this little peanut and are trying so hard to figure out why she's having these episodes while putting her safety and well-being as the #1 priority. It's frustrating for them to see her like this, too. They want answers as bad as we do. 

She's proving time and time again that she's the one in charge and as badly as we want to bring her home, we need her to be healthy and safe before we do that. 

Keep praying for our little miracle.