Post-Cath

"blow-by" oxygen for a little boost

If there's anything we've been reminded of this week, it's just how unique Miss Margaret's heart truly is.  Although she has the diagnosis of Tetralogy of Fallot with Pulmonary Atresia and MAPCAs, her version of this is pretty unique.  We were also reminded this week that things rarely go "as planned" and slowly we are becoming more comfortable with expecting surprises and going with the flow.  

Margaret's heart cath was overall successful and when we got to see her right after, her O2 sats were in the 90s -- excellent.  We expected her sats to be a little better than they had been prior to the cath since her pulmonary arteries were basically widened therefore letting more blood flow to the lungs more easily.  

So, if everything went well and she looked good, what happened to extend her stay in the hospital?  --  many are wondering this so I'll do the best I can to explain...

slept through the echo 

First - remember how wonderful the entire cardiology team is at Children's.  Margaret was monitored very closely the entire time she was in the hospital and her team did an excellent job of explaining what they could to us.  They also were quick to come up with a plan moving forward.

Margaret started to drop her sats and at first this wasn't too concerning as anytime you mess with the heart it takes some time to adjust.  Unfortunately, she started to drop more consistently and when she fell asleep she was starting to be in the 60s (she even popped into the 50s).  This is where it became concerning.  We hadn't noticed right away, but she also was starting to get puffy and was retaining extra fluid (again, remember that she got admitted early so she could get fluids and be well hydrated for the procedure...).  The team decided to increase her diuretic to try and get the excess fluid out and also drew some labs.  Margaret's hemoglobin was borderline low so a transfusion was ordered.  Margaret had also started to look dusky and that's not something that we typically see with her.  Even when she's dropped sats in the past, we have only seen her look dusky once.  For me, it was reassuring to hear the doctors and nurses verbalize that they noticed the dusky color as well because frankly I often question whether or not I'm actually seeing a change in her color or not.  Turns out, we all were.  

so puffy... but still smiling

The transfusion seemed to help and the diuretic had her filling diapers up in record time.  Her sats started to not dip quite as low, but then they started to go down again.  The next step was to add in a new medication to help with Pulmonary Hypertension, which Margaret has never actually been diagnosed with but the stenosis of the right ventricle could possibly be helped with this medication.  It relaxes the muscle and therefore should theoretically help the right ventricle pump better.  We also had a few extra doses of the diuretic to keep her from retaining fluid and the puffiness started to go down.  It's always weird to see Margaret with puffy eyelids since her eyes are ALWAYS open nice and wide and round.  🐸😊

so mad :(

Next up, oxygen.  We had to get Margaret some supplemental oxygen to get her sats back up to an acceptable level.  She had previously gotten "blow-by" oxygen where the tubing is set next to her and she breathes it in without having a nasal cannula.  This requires a LOT of oxygen and that's why we can't do that at home.  Margaret's doctors wanted to see how she would do with a nasal cannula overnight and whether or not the oxygen helped her keep her sats at a better level AND consistent.  Margaret was NOT happy.  So so mad.  She slept horribly and we were up more than we have ever been since she was born.  It was awful.  Of course, this didn't help her mood (or mine!).  Eventually we were allowed to take the cannula off and go back to the blow-by oxygen since that seemed to work well.

THANKFULLY, her sats started to look much better so we were allowed to see how she did without the oxygen.  She actually started to maintain her sats when she was awake in the mid-80s and even started to creep back up into the high-80s --- great news!  When she fell asleep for naps, she would drop her sats but not nearly as low.  She was bouncing around in the 70s now instead of 60s --- again, excellent, although we still need her to bump up a big higher to at least the 80s.  80 and above is where she needs to be.  

looking SO much better

So that's where we've kind of stopped.  Before we got discharged Margaret took a nap and kept her sats in the low 80s but we still came home with oxygen.  We need to be prepared for anything and unfortunately with Margaret, she likes to throw some curve balls.  We will use the oxygen when she needs it and monitor her O2 levels more often than we had in the past.  Using the oxygen at night will help keep us from worrying more than usual, that's for sure!  If Margaret ever looks dusky or her sats drop below 80 we will be able to put oxygen on her and get her back up.  We will also have it readily available for whenever she may need it and that makes the upcoming cold/flu season a little bit less terrifying.  

finally getting some sleep

so excited to be unhooked!

"let me out!!"

Heart Cath #2

Heart Cath #2 is done!  🎉

We checked in yesterday afternoon so that Margaret could have her pre-op testing done and then stay overnight to get some fluids.  It was important to make sure that she was well hydrated for this procedure.  

Ready!

Pre cath snooze...

The original plan was to get started right away this morning at 8:30am but unfortunately things got delayed a few hours because there was an issue with the humidity in the operating area on the floor.  Thankfully, Margaret's procedure just got pushed back a few hours unlike a couple of other procedures which got moved to different days.  

After -- so confused

Margaret was taken back around 10:45am.  She was definitely not happy to be in someone else's arms and screamed the whole way there right through the CVICU.😟  
This morning we were able to connect with the cardiologist who would be doing the heart cath and we discussed the risks and benefits of what they hoped to accomplish today.  We were reminded that Margaret's Pulmonary Arteries are really quite small and there was the possibility of only being able to address one of them during today's procedure.  The plan was to balloon the arteries and see how much they could increase their size and place stents if needed in order to keep them open wider.  Remember, she has had some work done with these and there is scar tissue that makes them a little tougher to work with because it causes the tissue to be more stiff (like what you experience with any type of scar tissue).  The decision to coil any of the MAPCAs would be made during the cath after they could determine wether or not necessary for now.  Right now the #1 priority is to address the pressures in the right and left ventricles and get those to be at a more desirable "balance".  

At 2:15pm we got the call from the nurse that the procedure was done!  Things went much quicker than anticipated, but results are promising and we are happy!

Here's what we know about what the cardiologist was able to do during this heart cath...

• Margaret's left Pulmonary artery was ballooned and a stent was placed.  This artery went from around 3mm to around 7mm -- Awesome!  Once this was done the pressures on each side of her heart already looked better!  Great news!!
• The right Pulmonary artery is smaller than the left and a bit more difficult to work with.  The cardiologist was able to balloon it and it went from around 1mm to around 2.5mm -- too small to make it worth it to put a stent in at this point.  
• We will have a follow-up appointment next week sometime and talk about the results of the Cath and do a quick check on how Margaret's doing since discharge.
• In about 6-8 weeks we might have to get a CT scan to get more images of Margaret's heart -- she had one of these done when she was born.  It gives the team good images to make a plan.  
• The pressures between her left and right ventricles look much better having intervened with her Pulmonary Arteries.  They are not where we hoped they could be, BUT they are much better and her heart should like the change.  😉
• Possibly the next heart cath could be as soon as before the New Year. 
• The overall reality is that Margaret will have many heart catheterization procedures but this is okay because these are much easier to recover from than open chest and open heart surgeries.  We hope to not have to put her through another big surgery until it is time for her Pulmonary Valve to be replaced -- we are estimating that to be around 2 years old.
• It was decided not to attempt to coil any of Margaret's MAPCAs at this time.  They do not seem to be causing any issues and one larger one actually seems to be helping pick up the slack for her teeny right PA.  

Our evening has been mostly uneventful.  Margaret even was able to jump back into full feeds at 8pm after doing great with a full feed of Pedialyte.  Feeds always stress us out because we know she still struggles with bad reflux and we hate to see her suffer with that on top of being sore from her heart procedures.  

We've been a little late to post an update because we have been so tired and really Margaret has been happy and wanting to play so all of our attention has gone to entertaining her.  We are very much looking forward to being discharged tomorrow!  

SO happy but SO exhausted.

Thank you for the love, prayers, good vibes, etc.  We continue to be thankful to have such a huge village of family and friends surrounding our family as we continue to navigate the world of Congenital Heart Defects.  As tough as this can all be, we continue to be in awe at how blessed we are! 💖

Feeding Clinic Follow-up

All smiles after her appointment 

brushing her new teeth

Hey all!  After our last post ended up having a kind of downer attitude, we decided we should do a quick update tonight.  

Margaret had an initial evaluation with a new feeding clinic this week and we are SO excited about how things went.  Now, we are well aware of the fact that feeding issues take time, usually a long time, to overcome but we think we have found a place where we feel more comfortable.  Our last team just didn't seem like the right fit for us but that doesn't mean they aren't fabulous and haven't had a lot of great success with other families.  We just didn't feel our needs were being met the way that we thought they should so decided to move on.  Our new clinic is much closer to our house as well.

We went into our appointment expecting the team to have a basic understanding of Margaret's complicated medical history, but it turns out, they hadn't received any information yet.  Yikes!  As soon as I started talking the therapists cleared their schedules so they could spend more time with us --- talk about feeling like you're being listened to!  

she likes the spoon - w/o food ha

We got everyone updated as best as we could and talked about what our hopes and goals are for Margaret: eating orally being the #1 priority.  In order to get to this goal, obviously we have to meet other milestones first.  

a girl and her pepper LOL

Margaret was nervous at first and had a nice tight grip on my shirt until she realized that she wasn't going to be poked or prodded by these new people.  She quickly warmed up to the therapists and before we knew it she was interrupting our conversations to squeal and scream as if she was offended that all of the attention wasn't on her quite yet. 😜

Margaret's new team is happy with the feeding schedule she is currently on and super impressed with her growth.  They were glad to hear that her reflux has improved even if she still struggles with it - most of the time she doesn't appear to be in any pain from it but it's definitely still a big issue.  The team was also happy to hear that we were able to transition Margaret off of the elemental formula onto a "regular" type.  The team agrees that we need more guidance and we will now have weekly, that's right WEEKLY, Occupational Therapy (OT) sessions.  Margaret needs to learn to trust and become comfortable with the therapists so a lot of what we will be doing for a while will be strategizing and coming up with things to try each week.  Bill and I feel excited that we will have an OT working with us to help us move Margaret forward.  Up until now, most of our experience with feeding clinics has been "don't do this or you will cause her to have an oral aversion" -- it just really felt like more focus was on what not to do instead of what to try.  

We are optimistic and refreshed.  Margaret is growing so fast and we want to make sure the teams working with her are taking into consideration her growth and we move forward with her therapies as well.  It's going to be long and frustrating, but by golly, we're going to get this girl to eat someday!  

Check it out --- she's been willing to bite down on bottles lately and even appeared to swallow a little bit of formula, too!  Baby steps!

Inevitable

Today we had an appointment at the Children's Heart Clinic.  

attempt at a family selfie

Not to be too dramatic, but overall things with Margaret's heart aren't really where her cardiologist was hoping they would be this far out from surgery (5 weeks yesterday...1 more week left until we can lift under her arms!).  Her pulmonary arteries have not grown like they hoped they would and the pressures are still needing to be addressed.  We both got a little bit of a pit in our stomach when our wonderful cardiologist told us that he wants to get Margaret back into the cath lab sooner rather than later, as in within the next week or two. 

helping mama hold the transmitter

Margaret has been a little "off" the last week or so and every now and then she gets a dusky look to her.  Last week it became extremely noticeable to me so I threw her pulse ox on to see what her sats were and they were bouncing around in the low 70s.  This is still okay considering her heart is continuing to adjust to it's new anatomy and her type of CHD but that doesn't make it less scary that's for sure.  She's also been getting extremely sweaty randomly which might suggest her heart is working harder.  

she's such a happy girl

We started with getting Margaret's pacemaker checked - she loves these ladies.  Lots of smiles, squeals and babbles came out of her and it's always fun for us to see her being so social.  The pacemaker still is functioning with about 10 years of battery life left which means it isn't needing to pace very often.  The data shows that it has paced 0.2% of the time since May and we suspect that is actually only from the time when it paced her right after her open heart surgery.  Margaret was a great helper and kept her hand on the machine to help hold it steady while the data was being transmitted. 

Next, we headed in for the dreaded echo.  I warned the tech that Margaret really hates these lately and he reassured me that he'd get what they needed and do his best to not upset her.  Of course, Margaret started screaming the second we went into the small dark room because I'm confident that she knows exactly what was to come...We tried having her lay on the table but she really was exercising her strong lungs and I ended up needing to hold her for the entire echo.  Once she got settled, the tech was able to get the pictures and measurements he needed and overall she did okay.  

I promise, the echo doesn't actually hurt

We spent some time talking with the cardiologist and are a little bummed with the lack of progress from surgery to now.  Unfortunately her echo today looked worse than the one they did after surgery so that means they need to do intervention soon.  I just got off the phone with the clinic and Margaret is all set for pre-op on Sept. 11th and the heart cath the next day on Sept. 12th.  

daddy's girl

The goal of the heart cath is to balloon Margaret's pulmonary arteries and maybe place stents if needed.  There is a chance that her arteries won't stay ballooned and the stents won't work.  Her PAs are around 3mm and a normal size is around 10mm.  If that happens, we'd be looking at Margaret having heart surgery at that time.  Bill and I are choosing to be optimistic and believe that the ballooning will work and if she ends up needing surgery, her team will take very great care of her.  We've got this.  Not exactly how we were hoping today's appointment would go, BUT, it is what it is and we shall continue to move forward.  

not thrilled with the news

zonked out

Thank you for continuing to keep our precious warrior in your thoughts and prayers!  We're doing our best to keep everyone updated but sometimes it's nice to not have anything major to update!  

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!

Post-Op Update

ready to go!

Today was our post-op appointment at the Heart Clinic.  Overall, things look good and we are happy with the progress she's made since her big surgery.  Can you believe how these heart babies bounce back SO fast??!!  We are in complete awe - seriously!

super irritated with the x-ray

We will go back in 3 weeks to have an echo done and follow-up with the cardiologist again at that time.  The pressures in the left and right sides of Margaret's heart are still a concern as are the size of her pulmonary arteries and the small MAPCAs.  The echo will give the team an opportunity to get an idea as to whether or not her PAs are growing at a sufficient rate or if they need to place a stent.  They will also be able to get estimates of the pressure measurements to see if they have changed at all since surgery.  After the echo we will discuss scheduling a heart cath for mid-September.  We are a little bummed to have to be going down this road already, but the anatomy of Margaret's heart is complex and we knew this all along.  A heart cath is much less invasive than open heart surgery and with the amazing advancements in technology we are extremely thankful that it is even an option.  During the heart cath the surgeon and cardiologist will be able to get precise measurements of the pressures, see the blood flow, place a stent (if needed) and be able to coil the unnecessary MAPCAs.  

trying to distract her while we waited

At this point, Margaret's heart is functioning well but one way to look at it is that it just needs a little more work to be done for a while.  The need for a heart cath does NOT in any way mean that her open heart surgery was not successful.  Actually, her surgery resulted in what the team wanted and we always knew there would be a cath scheduled sometime after surgery.  

Our appointment went smooth and was relatively quick, today.  The x-ray of her lungs looked great and we get to wean off of lasix over the next week and by then we will be done with the last med from the hospital stay as well.  This will leave Margaret only on a small dose of aspirin every 48 hours (so many alarms/reminders set to remember this one...it's kinda important...!) and her reflux medication.  This is remarkable for a kiddo who has a "broken" heart!  Definitely thanking God for her great blood pressure and sats! 🙌

oops - slept through lunch w/auntie

Margaret is absolutely thriving at home.  She had a couple of tough days and very rough nights but we seem to be getting back into our old routine thankfully.  We haven't gotten out of the house too much as we want to let Margaret's sternum heal and it's hard enough keeping her from being too wild at home let alone out and about where she tends to get extra excited!  We have 3 and a half more weeks of sternal precautions.  Technically she's allowed to do some tummy time now but she hasn't been very happy with it so we aren't pushing it.  

Shout-out to Aunt Jessie for treating us to a delicious lunch after our appointment.  Margaret says she's sorry she slept through most of our time together and promises to be more alert and exciting next time.😘

getting too big for this swing ha!

OH - for those wondering, the teeth that appeared to be ready to pop through while Margaret was in the hospital have NOT popped through yet.  The saga of teething continues...😜

That's all we've got for now!  Thank you for keeping our family in your thoughts and prayers.  

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