OHS #2

Now that our big day yesterday is over and we've been able to get a few hours of sleep, we are feeling rested and ready to give a proper update. 

5/22/18 - Open Heart Surgery #2

Quick little recap as to how we ended up here much sooner than we thought we would...
In short, Margaret's conduit was basically failing and her tiny right pulmonary artery seemed to be most of the culprit.  The limited blood flow was too much for the conduit to handle and it began to leak.  Once it started leaking, things dramatically escalated and voila hello large and impressive aneurysm.  We continue to be thankful that we had already been scheduled for the heart cath which was when the aneurysm was found and we learned how sick her little heart was. 



As part of pre-op last week, we had a sedated CT scan so the team could get a good image of her heart, locate the MAPCAs and get measurements. 

Back to surgery...
Margaret went back to the OR at just before 3pm and it took about an hour to get her settled with all of the necessary lines and prep needed for the surgeon.  

Just a little after 4pm, surgery officially started.  Everything went smooth getting her chest opened (thank God as this was one part that was going to be tricky with her enlarged heart). We were able to get periodic updates from one of our favorite cardiologists throughout the long day.  We've adopted the "no news is good news" mantra along with our "we've got this" motto lately.  Margaret truly has already taught us both so much about being patient and just letting things go without too much extra worrying.

It was just over 10 hours from kiss to kiss.  Longest 10 hours sitting in the waiting room trying to entertain each other while not getting on each others nerves.  We managed to sneak down for a quick dinner then back to waiting.

The actual surgery time was just over 7 hours.  A bit longer than they anticipated.  Locating, isolating and re-routing the MAPCA was a lot of work but he was able to connect it to Margaret's right pulmonary artery.  That same artery was also patched to make it bigger and the stent was cut open and made larger as well.  

Margaret's conduit was replaced with a new one of a different type.  The new conduit, Hancock Conduit, is supposed to be better able to handle higher and wonky pressures that we know Margaret still has.  

Pacemaker wasn't touched and we are glad to continue having that little safety net.  We certainly are not in any hurry to have that removed but it is reassuring that she hasn't been using it. 

Her chest is still open and we expect a plan to be discussed later today or tomorrow for closing it since she seems to be stable and the bleeding is leveling out.  For now, she's being kept comfortable with a concoction of pain and sedation meds.  Working on getting her to pee and continue to be relaxed and rest.  

There are a LOT of tubes and wires connected to her so we will not be sharing any pictures of her post-surgery until she's extubated and has started to have lines removed.  

Thank you for continuing to keep Margaret, our whole family, all of the doctors, surgeons, nurses, etc. in your thoughts and prayers.  We love you all!

1 month post-op

Can you believe it?  Margaret's open heart surgery was 4 weeks ago already!  It is amazing how fast the weeks have gone by now that we are home and settled back into our routines.  

Thanks Susie for the adorable headband!!!

The emotions we've experienced over the last month have been kind of all over the board.  It's such a relief to see Margaret doing so well, thriving really, at home but it's also a bit terrifying.  You see, it can be easy to forget that Margaret has a fragile heart.  She's spunky, sassy and most of all SO SO happy.  Seeing her in pain was the hardest thing either of us has ever experienced.  When we brought her home after surgery she was still struggling with not feeling quite like herself and we were still working on weaning her off of a pain med -- not because she was in pain, but because she was struggling with withdrawal.  I wasn't sure how much we would be willing to share about our journey as a family impacted directly by a rare CHD but ultimately the goal is to spread awareness and sometimes that's leaving your comfort zone.  Sometimes that means sharing more than you thought you would be comfortable doing and I guess that's kind of how we feel when we update everyone with how Margaret is doing.  We don't want anyone to feel bad for us --- look at this beautiful little girl we have been gifted by such a gracious God!  No matter what we go through, we are together and we will continue to focus on the good while also giving ourselves some time to deal with not so pleasant emotions occasionally because lets be real, we are still human!


Anyways...back to Margaret 😊

She's was able to wean off of the pain med much faster once we were home.  It was AMAZING to see her realize she was home and her adorable smile and goofy personality soon came back a few days after she realized she was here to stay.  We had a post-op appointment a few days after discharge and Margaret's cardiologist was happy with how well she transitioned home.  We did learn that she will unfortunately need a heart cath in mid-September.  We were hoping we would have a few months before going back for another procedure but it is what it is and we just remind ourselves how amazing our team is and that they really and very truly put Margaret's health and well-being as #1.  Have I mentioned how great they are?  They are like family to us even if they don't realize it, we love them!  

Next week, Margaret will have an echo (cue anxiety!).  After the echo Margaret's cardiologist will meet with us and we will discuss the plan for the heart cath.  The heart cath will not be diagnostic this time, it will be for them to do more intervention.  Something about checking on the pulmonary arteries, measuring leakage in a couple of places and measuring the pressures more accurately and deciding from there.  We will be staying overnight.  

For now, we will continue to bask in all of the glory that is our life and remind each other how blessed we are with the life we've been given.  We worked hard to get where we are and are glad we can share our experiences with you all.  

In honor of it being 4 weeks since the big surgery, of course, I snapped some pictures of Margaret in her Heart Warrior onesie --- looks like I'll be needing to order a new one very soon!  It was awfully snug but With Hope & Grace does such a wonderful job and her products are high quality.  Sharon is a heart mom as well and she truly loves what she does and we love supporting a small business like hers.  💓


OH - those pesky teeth that have been trying to come through have FINALLY popped and they are the cutest!  We're still waiting for them to finish coming all of the way through but Margaret is obviously much more comfortable now that they've popped through the gums.  Success!

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!