up, down, backwards, sideways...FORWARD

the many faces of Mighty Margaret

Today we are composing this update with an overflowing amount of excitement!

Our weekend has been anything but boring.  Margaret had a very rough couple of days (again) and the result was a consult with the pain and palliative care team.  It was decided that the oral medication that had been prescribed in order to replace the IV med was not working well enough.  Apparently most kids can't tell the difference between the two meds but there are some who can...no surprise to us that Margaret can totally tell the difference.  She can also tell the difference between certain PPIs that she's been on for her reflux, but thankfully we figured that one out finally with help from her truly amazing pediatrician and team.  I'm hoping somewhere in Margaret's chart it's written in giant red letters the words:  VERY SENSITIVE TO MED CHANGES!  GLACIAL PACED-WEANING ONLY. 😆

Anyways, back to this weekend.  Yesterday, after consulting with the team, the dosage for the oral medication was increased to more of a moderate level - she was previously on a minimal dose with hopes that it would do the job.  Mom might have had a mini breakdown and finally told the doctors that enough is enough and clearly the current plan was not working.  The new dose seemed to be working MUCH better.  Phew. 

Advocating is hard.  I have a whole new outlook on how the families I work with must feel!

Overnight Margaret was able to get a solid 5 hours of sleep before waking up fussy.  She was able to calm down after a while and actually went back to sleep and woke up around 8:15.  We celebrated by accidentally disconnecting her extension from the feed pump and spilling formula all over me.  Whoops.  We couldn't help but laugh because that's totally something that has happened many times at home and it felt like we finally were able to think about something other than withdrawal.  

finally got some sleep!

our little fam bam

Margaret has been in a great mood and we can tell she's feeling a million times better.  It's absolutely crazy to think that less than 2 weeks ago she had open heart surgery!  It's kind of funny because I used to joke with Bill prior to surgery that this time we would bring her home with the glue still on her incision...guess not this time as the last piece of glue fell off yesterday.  Maybe next time we will be able to skedaddle out of here a little faster.  It's all up to Margaret, that's for sure.  

Overall, we are all feeling refreshed and super excited because discharge orders have been written and now we are just waiting for everything to be done!  We are going to RUN out of this place.  (discharge usually takes a while so we just hope to be home later this afternoon). 

adding more to her Beads of Courage

Breathing easier

Brace yourselves, this is going to be a long one but I promise to include pictures to make it more fun. 😉

It's been a week, y'all!!!  

Tuesday/Wednesday this is how she looked...

Margaret had a rough couple of days this week as the IV meds were being weaned off.  At one point she hadn't slept more than a few 10-15 minute restless naps in a 24 time period.  It was awful.  Clearly the snails-paced weaning was not working and we had to switch to more of a glacial pace.  We also ended up adding a new oral medication as the IV med was decreased to help with lessening the discomfort that and it seems to be working well.  Yesterday and today have been so much better and Margaret looks and feels a lot more like herself.  She's still pretty unpredictable and we can tell that she's experiencing some discomfort but not nearly at the same level as she had been.  

loving the swing

On Wednesday the NP and Cardiologist let Margaret try hanging out without the oxygen support.  She was able to keep her sats within an acceptable range AND she made it through the night without needing it!  We were pretty pumped to see her sweet face without the nasal cannula.  Next up was the line in her foot.  Margaret hated having that one in and it randomly started not working so it was able to come out sooner than expected.  The only line left was the neck line and that one came out today!!!  🎉

Thursday Margaret was feeling much more peppy and we even got to get her dressed in her jammies.  She insisted on having a bow, too.  Such a girly girl.  😜  We were able to get her into a swing and a high chair and get some actual playing in as well.  Margaret was excited about the change in routine - things can get pretty boring around here...I even was able to get a little giggle out of her while playing in the high chair.  SO fun to start hearing her make noises and facial expressions that she had been making prior to surgery. 

dressed, playing & watching Moana

Today, Friday, was a good day.  Margaret is still a little more irritable than normal but that's to be expected when weaning off of the type of meds she's been on.  We stopped the continuous feeds and have started working on getting her back into her bolus feeds.  She's done okay so far and unfortunately still refluxing pretty bad.  We can handle reflux.  Often we are asked what her baseline is and it's refreshing to be able to say "yep, this is what she was doing before surgery" and then it doesn't become a concern for the team.  We just need her to be at baseline in order to bring her home.  

The age Margaret is at can be hard.  Why?  2 words: stranger danger.  Margaret is typically extremely social and LOVES people -- seriously, I have videos of her trying to reach out to and play with strangers at the grocery stores.  She LOVES people.  It's been a bummer seeing her go through stranger danger here, though, but it's totally understandable.  This place can be scary when you're too young to understand why you hurt and that the nurses and doctors are actually helping you.  When someone takes a bandage off your tummy and it doesn't feel good, wouldn't you scream when you saw them, too?  As a result, Margaret has become even more of a mommy's girl and the poor nurses struggle with keeping her calm when I'm not here.  Thankfully we shouldn't be here too much longer and we are hoping Margaret becomes a social little butterfly again soon.  

more playing

We also discovered that Margaret seems to be teething more and we think her bottom two teeth will pop through soon.  Go figure, her body chose now, right after open heart surgery, to put her through teething!!  

Overall she's had an extremely busy but productive week.  We are very optimistic that we will be able to go home soon.  

helping update the blog

mommy's girl

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... 😜