Stable

No change = Stable...
Margaret had a check-up with her favorite cardiologist today.  We never seem to know what to expect with these appointments but overall things went well.  

Margaret will be put on the surgical schedule for a heart cath sometime in May -- this means, she will get a little "tune up" just in time for her to participate in the Children's Walk for Amazing event taking place on June 9th --- don't forget, you can join our team, too!!

Back to the appointment...
We have known for a while that Margaret would have a heart cath at some point this year but a little piece of me was unrealistically hopeful that we could make it to summer or even next fall before crossing this bridge again.  Margaret had an echo today and it went uncharacteristically well.  Seriously.  Bill and I were able to distract her enough with cuddles, bubbles and TV today.  She let the tech get many images and even seemed to relax a few times!  Mama watches her heart rate on the monitor often during these echoes and I have never seen her relax as much as she did today.  It was refreshing!  Of course, we saw her off the charts adorable pouty face quite a few times, but, she let the tech continue and only screamed a handful of times.  She did sign "all done" a few times which broke my heart into a million pieces each time because we knew she was expressing what she wanted but we just couldn't comply.  


The nurse was able to get a blood pressure reading, a measure of her sats, height and weight, all with minimal complaining from Margaret.  Seriously, who was this child today?!


When the cardiologist came in, Margaret was all sass.  She blew kisses at him, she said "hi" and she even let him listen to her heart and lungs WITHOUT crying.  Why did I feel so stressed about this appointment leading up to it? Clearly my child had grown up overnight and no longer got quite as stressed out as she typically does at these appointments!  While mommy and daddy chatted with the doctor, Margaret busied herself by moving around the room, digging in our bag and even made her way to the doctor and tugged on his pants and coat.  It was almost like she was trying to stay "ummm, pay attention to ME!"  It was adorable.  

Today's appointment was kind of weird.  We walked in with our little baby but as we moved through each piece of the appointment, Margaret suddenly seemed so much older.  She didn't seem like a baby at all but more like an actual toddler.  When did our little baby get so big?!

So what's next?  We will patiently wait for the call with our scheduled dates for pre-op and the heart cath.  At the end of March, our little family is taking a much needed and cardiology-approved vacation to Orlando.  We are very excited!  Now, to relax and do our best not to stress about the next couple of months.  We are so grateful to have a team of doctors who believe in being proactive with our daughter's care and not reactive.  

Cardiology Update

Confession.  I stopped at McDonalds on the way home from our appointment today and ordered myself a happy meal and a coke as a way of eating my feelings.  😬

Before I freak you all out and give you the impression that today's appointment was awful or anything, let me be very clear: we didn't learn that anything "worse" is going on with Margaret's heart.  We just received some confirmation that her next heart cath will be soon.  Her team was originally hoping to push the next procedure past the new year, but she's scheduled for her next heart cath on Nov. 17th.  We are going to not get admitted the night before and see how things go.  Last time, we did get admitted the day before but she did ok and really it was a lot of us just trying to entertain her and extra monitoring by nurses.  This time, we will show up in the morning and get that night before at home together.  With many heart caths, patients are able to go home later that day and we are going to be extra hopeful and optimistic that we won't have any big surprises that keep us there for more than maybe one overnight... we like to keep the bar set high 😜  We have 2 weeks until the procedure and that means 2 weeks to hopefully avoid catching any sort of illnesses that might result in postponing it!  Yikes - prayers for health of our family are greatly appreciated!


Back to the appointment today.  We started with the usual: weight and height check.  Margaret is a solid 29" long and about 17 and a half pounds -- we were happy to hear this since we've been messing with her feeds a little to see if we can get more control of her flaring reflux plus she's been ill and throwing up even more of her feeds than usual.  She's looking a little leaner lately but we have an appointment with a new dietician next week to discuss calorie intake and everything.  

Next we had a pacer check.  GREAT news during this check.  Margaret's pacemaker continues to be an expensive accessory and not a necessity!  Read: it hasn't been pacing her and her heart has been doing all of the beating.  The tech is one of the sweetest people at the clinic (they all rock!) and gave Margaret the cutest little Medtronic beanie baby.  It's always exciting to hear that her heart is not needing the extra support form the pacemaker.

The echo was tough.  We tried giving a dose of benadryl to see if we could get her to relax a little and I guess it somewhat worked.  The tech was able to get the images although I'm certain they weren't of the best quality but thankfully her team knows and expects this of Margaret's echoes.

Meeting with Margaret's cardiologist was up next like always he listened to me give updates, share our concerns, asked questions and we chatted.  He tried to explain Margaret's echo information and I kind of understand but the second we leave I seem to forget it all.  It's still overwhelming!  We left with a "see ya in couple weeks!" We brought a picture of Margaret in her Halloween costume to our appointment for her cardiologist today.  After all, these people are part of our extended family and we think they enjoy watching their sweet patients experience milestones almost as much as we, the parents, do.  That's what makes them so fantastic!  They are invested in our babies and we greatly appreciate their dedication.  At one point I said "I have to be honest.  Margaret's heart sometimes really worries me and stresses me out.  I try  not to let it get to me, but sometimes it just does."  To which he reassured me that it's ok and she stresses them out sometimes too with her 'surprises'.  Again, SO thankful to have such a wonderful team taking care of our little miracle.  

In other news, we have our 3rd tooth!  I say "our" because it's been an awful couple of weeks of hardcore teething and we have all been suffering as a result.  Now we wait for the other top tooth to start moving down and start the torture that is teething all over again! 😆

Margaret got approved to get a special vaccination to protect her against RSV and we are happy about that.  This will give us one less thing to really stress about this winter especially since she's already had two awful colds.

She's doing fabulous at daycare and neither of us cries when we do drop-off in the morning.  There is no way to describe how awesome it feels to see her notice me when I show up to pick her up. 💕 She makes my heart so happy!

Friends - PLEASE be mindful and honest with visiting with Margaret and our house this winter.  We are encouraging those who plan on visiting to please get the flu shot (although we know we cannot force anyone) and to skip a face-to-face visit if you or anyone around you has been sick.  We are quite nervous moving into cold/flu season with Margaret and her sensitive immune system and will not risk exposing her to anything if we can and are able to avoid it.  Thank you for helping us keep our little lady as healthy as possible!!

Appointment recap

Mighty Margaret brought out the big guns (read: lungs) at her appointment today.  We headed to the Heart Clinic for a post-cath check-up and it definitely was an exhausting one!  

Oh my gosh, you guys.  Screaming. So. Much. Screaming!  Today's echo was the worst yet.  I felt awful for the techs -- that's right, techS.  after Margaret started screaming a second tech came in to try to help calm/comfort her.  Nope.  Margaret just wasn't having it today.  They did their best and we took several breaks to try and help her regroup because she was crying so hard that her lips would turn blue.  Not cool, Margaret!!!

We finally gave up and I'm positive the images they "got" were terrible.  Thank goodness Margaret has such an amazing team and her cardiologist knows how sassy she is when it comes to these appointments.  It's kind of hilarious, though, because the SECOND the techs stopped trying to put the wand on her chest, she immediately stopped crying and was smiling at them.  When the cardiologist came in, Margaret was happy and smiley.  Such a little flirt.  She behaves so well for him and it's such a relief.  

Margaret's heart is functioning well overall. Her right ventricle pumps abnormally, which is expected with the restricted size of her pulmonary arteries downstream. But, the pressures in her heart are ok albeit the one measurement they were able to get showed very high pressure (remember: screaming). Her cardiologist is happy with her O2 sats and is comfortable with monthly checkups from now on until the next heart cath will need to take place. Margaret is on a low dose of medication to help keep her heart pressures down. We are expecting her to have another heart cath before the end of the year. The goal is to delay her next surgery as far out as possible, without allowing the pressure levels to damage her chambers.  We do not have an anticipated timeframe for when to expect to be back at Children's for the next procedure.  For now, we get a month pass and will just go appointment by appointment until it's time.  We didn't get to make any adjustments to her current medications as her cardiologist put it, things are working right now, her sats look phenomenal and we don't want to rock the boat.  Our job into check sats a few times daily and call the clinic if Margaret does anything "weird" like gets puffy or starts dropping her sats again.  We got this.

 

**sound asleep before we even got out of the parking ramp.  Mighty, indeed. 💕

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!  

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!