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.  

Busy start to 2018

Mighty Margaret has had quite a busy week!
We started the week out with going to the pediatrician for her 1 year appointment (someone pinch me because I still cannot believe my precious baby is a whole year old!!).  Margaret got her immunizations, we did a quick check for strep as her throat looked sore to the doctor, had a nice long conversation and caught up with our favorite pediatrician.  We're currently in the middle of an annoying disagreement with one of our pharmacies and our insurance regarding Margaret's main reflux medication.  We *think* we have a plan for now, but it's all super annoying and frustrating.  Anyways, Margaret did a lot of exercising of her lungs at this appointment but also flashed plenty of smiles and even blew kisses at one of the nurses. The best part of the appointment?  We got the pediatrician's support in attempting to begin a wean off of Margaret's feeding tube!  

Tuesday was supposed to be an OT day but I decided to cancel the appointment.  Margaret had a reaction to her immunizations and ended up with a fever and just needed a day to sleep and relax.  She's feeling much better today and we were able to keep our cardiology appointment.  We did have a swab taken and tested for influenza, just in case - negative, thankfully!

Today was the biggest day of the week.  Cardiology.  These appointments always stress us out as we seem to never really know what to expect.  Margaret screamed a lot during her echo but one of the nurses was able to calm her for a while with bubbles -- we had 3 people in our room during the echo and at one point the cardiologist came in as well.  Margaret is such a goon!!  She made it through the echo and I believe they actually got decent images - THANK GOD!
Next, she had her pacemaker checked and her settings changed.  Her pacemaker has been pacing about 1.3% of the time and that's right where we expect it to be.  Her settings were changed to let her heart rate go a little lower than it was previously allowed to do -- it was set to pace her if she dropped below 100 but now it will pace her if she drops below 80.  Part of the check includes the technician pacing her to make her heart rate go faster and slower which Margaret is not a fan of.  
When we met with Margaret's cardiologist you could just tell that things look good.  He was excited to share that her echo looked better than last time --- ummm, WHAT?!  
Overall the echo showed:
- the PFO that Margaret has now has blood flowing in the correct direction now (right to left) - previously it was flowing the wrong way.
- her tricuspid valve appears to be barely leaking, more like dripping compared to it being more than mildly leaking during her last echo
- the right side of her heart is still enlarged, however, the pressures look like they might be a tiny bit better
- Her Sats have stayed in the 90s since her last cath.  We've only seen it dip into the 80s once and that was during a nasty cold that she had last month.  
-- Margaret's heart looks so good!  All of the stress and scariness of her last heart cath were worth it.  Placing that tricky stent has helped her so much and we continue to be SO SO SO grateful for the amazing team of doctors and surgeons we have fighting for our little warrior.  It's fun seeing how excited they all get when she's doing so well.  While we were in the clinic we even had several other doctors pop in to say hi and it's always extra fun to see how they love seeing Margaret as well.  
We also got the a-ok to pursue a tube wean from cardiology so the next few months should be busy and exciting for Mighty Margaret!  We need to get this girl eating and right now we plan to take full advantage of how well her heart is doing and try to wean her.  Thank you for being a part of our village, friends!   

Extra pep in our steps

I work in education and my fellow little people teachers will understand my following statement...

2017 rolled in like a lion and it only seems appropriate that we roll out of 2017 like a lamb.  For those who don't get it: 2017 started with a serious bang and our family has literally been going nonstop since and it has been a completely exhausting yet exhilarating year and we are looking forward to ending it with no medical "excitement" or surprises.  It's hard to believe that we are looking at the end of the year already so soon and our little miracle will be ONE soon.  Yikes.  More to come about that in a couple of weeks.  For now, this post will focus on our follow-up appointment today. 

We had our follow-up appointment this afternoon with our favorite cardiologist!  Really I should say "favorite heart clinic" because we just love every nurse and cardiologist at the clinic.

First things first, Margaret had an x-ray of her lungs to check on them since the pulmonary hemorrhage that she experienced during last week's heart cath.  Excellent news:  lungs look clear!  Celebrate!

Next:  We've notice over the last week that Margaret has had a LOT more energy and just overall seems happier and less tense.  She's a crawling machine!  Her reflux has been remarkably improved and we can count on one hand how many times she's thrown up --- seriously, those of you praying for a miracle cure for her reflux must have been praying hard!!  Seeing how good she's been feeling lately really puts into perspective how icky she must have felt leading up to this heart cath.  This isn't to say that she's been miserable and feeling terrible, I just mean that her little heart must have been working much harder than we all realized and now with both Pulmonary Arteries stented, the increased blood flow is doing her body good! Her sats have been above 90 most of the time and that's great to see.  Her cath site is healing well, although it looks a bit rough since she had way more bruising this time than any of her previous heart caths.  

At our appointment, I asked a lot of questions (like usual) and Margaret's wonderful cardiologist took the time to chat and answer all of them.  I really just love how individualized her care is and how invested her doctors are in her health and well-being.  We did talk about a long-term plan and but we really just have to see what Margaret's body tells us.  We would love to put as much time between procedures as we can knowing that she will become symptomatic in her own way.  

One of the things I asked the Dr. to go over (again) was the difference between Tetralogy of Fallot and Pulmonary Atresia -- both are used to describe Margaret's heart in her records.  Basically, Margaret's heart is really more of the Pulmonary Atresia with VSD and MAPCAs, not actually TOF.  PA kiddos tend to need more interventions compared to TOF and of course we've heard over and over that the MAPCAs add an additional level of complexity.  Eventually those MAPCAs will need to be dealt with, but for now they aren't doing any harm and we'd like to wait as long as we can!  We also talked about not rocking the boat right now with meds and plan to continue the course we're on.  Eventually we'd all like to see Margaret get weaned off of two of the medications but for now, she's doing well and her heart seems to be responding well to the routine we're using.  

During the heart cath, one of the leads connected to Margaret's pacemaker appears to be doing something kind of strange.  I guess it looks kind of like the wire is separating from the covering --- Margaret is not in any danger because of this and no one seems concerned.  This isn't something that they have seen before (surprise, surprise, eh?).  Right now the plan will be to do a pacer check in January and possibly discuss lowering the limits to see how she does and maybe during her next surgery have it removed.  This is NOT me saying Margaret is going to have her pacemaker removed.  It's just a possibility, but again, right now we like having the "back-up" just in case and it doesn't harm her any having it placed.  But it would be pretty exciting to have it removed eventually.  We'll continue to pray that her heart doesn't need to be paced and that the pacemaker continues to just be a fancy accessory in her tummy.

Bottom line - we are all aware that Margaret's heart is unique and she has been known to keep us all alert and on our toes.  We continue to pray that she will move through the next couple of months with no major health concerns.  

If anyone on Margaret's health care team ever were to stumble upon this blog I sure hope they don't think it's creepy how much we brag about them and how truly thankful we are that we landed where we did with the team that we are fortunate enough to have caring for our little lady.  We've spent a LOT of 2017 at the Children's Heart Clinic and Children's Hospital.  When we walk in for appointments, there is often a volunteer at the entrance guiding people and every single time they say something to us about how they can tell the families who spend more time there because we know exactly where to go without needing any directions.  Good thing?  

If you see our little family in the near future you might notice an extra little "pep" in our steps as we are so excited to spend the rest of the holiday season focusing on just that, the holidays!  We left the clinic saying "see ya later, but definitely not anytime soon!" to our favorite cardiologists and might have been on the verge of tears as we drove out of the parking ramp for [hopefully] the last time this year!

See ya in January, Children's Heart Clinic!! 

exhausted

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

Pre-Op

Well hello, hello!

This morning, our little trio found ourselves in the all-too-familiar routine of making our way over to Children's Mpls for Margaret's morning pre-op appointments.  We could probably get there with our eyes shut at this point!  The drive was a nice opportunity for Bill and I to talk a lot about the upcoming holidays and the "anniversaries" of many big happenings in ours and Margaret's lives.  I have been feeling an overwhelming amount of unpredictable emotions lately and this was the first time the two of us really stopped to talk about things lately.  We've been really busy and unfortunately our family has been battling terrible colds and sinus infections for the past month.  It was reassuring for me to be able to hear that a lot of my feelings are similar to what Bill has been feeling as well.  We're anticipating the next few weeks and months to be filled with some serious reflections on the past year.  You know we will be hugging each other extra tight during the holidays this year as we often are still in disbelief that we have been blessed with raising this amazing child.  We also plan to be extra careful with how much we knowingly expose Margaret to this winter.  We are hoping to spend a lot of time at home and embracing the calm time that we hope to experience!!

Back to today...
We started with the usual: check-in at the Heart Clinic where Margaret knew exactly where she was and was pretty quick to bring on the water works.  We then did a quick sats check before heading downstairs for a chest x-ray and bloodworm.  I am always so grateful for appointments when Bill and I are able to go together.  It takes some of the stress out of appointments and watching how silly these two are together makes my heart so full.  Margaret also is currently obsessed with other children and it's fun to watch her observe other kids of all ages.  She's SO curious!  💜💜💜

The blood-work was definitely the worst part of the morning.  Thankfully, we had a great lab tech who was very careful to look at both arms and wrists before determining which vein he knew he could be successful with and he even found a good one to use!  Margaret hated every second of it and screamed the whole time but once he was done, she was pretty quick to turnaround and flash some smiles.  Pretty impressive recovery time for sure!

We then had the opportunity to meet with the cardiologist to discuss his plan for the Heart Cath.  This part of our appointment was pretty quick since we are pretty familiar with what a heart cath is and how our day will likely look.  In short, he plans to work/focus on her right Pulmonary Artery and we are all hoping he will be able to balloon it and then place a stent.  This will be tricky because of how small we all know her right pulmonary artery is and last time he was not able to place a stent because the artery was not able to be ballooned to a diameter that would make it worth it.  We will be anxious to hear the results of the cath, that's for sure!  We expect to stay overnight at least one night and plan to remind Margaret that Children's isn't a hotel and she would be much more comfortable recovering at home, especially for Thanksgiving! haha 😉

Anyways, we head back to Children's early Monday morning and will post an update with the results once we know!  Thank you for keeping our little warrior and our family in your thoughts and prayers.  We are extremely thankful for each and every one of you!

so interested in the other kiddos

exploring in the waiting room

💖Stay tuned, we are working on a plan for celebrating Mighty Margaret's birthday by giving back to the hospital that is like an extension of our home.💖  

fam photo 

she knew what was coming...

Always on the move!

"get me outta here!"

that face!

loving that crinkly paper at least!

completely exhausted afterwards

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!!

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! 💖

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!