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.  

Different

We are nearing the end of Heart Month so I wanted to touch base on a couple of topics that we often get asked about.  

First up...what are some examples of daily challenges we encounter because of our daughter's special needs?

Well, to be honest, Bill and I have worked very hard to not think of the things we have to do as challenging, we prefer to think of them as "different".  Parenting a child is terrifying to begin with and adding to that parenting a child with a heart condition is a little extra terrifying.  We had to completely reset our mindsets as to what we expected parenting to be like -- but really, who seriously goes into having children knowing exactly how they will parent?  My bet is, no one!  You never know what challenges you will encounter even for children who are completely healthy.  

Here are some examples of things we have to think of or work our daily plans around...
-reflux: we have literally been stuck in our home for more days/weeks than I really care to admit solely because we couldn't get Margaret to stop throwing up.  I think we both experienced a level of anxiety and paranoia when it came to leaving the house with a child who, at times, seemed like a ticking time-bomb of throw up.  Even if we planned outings in between feeds, it never failed that at some point Margaret would reflux up and we would quickly need to change our plans.  Even sitting in her carseat could trigger a reflux episode and frankly that was something we would avoid at all costs.  We also, admittedly, were pretty embarrassed when Margaret would throw up in public places so things we enjoy doing like going to church on Sundays became far to difficult to manage.  
***Thankfully, since starting our tube-wean, Margaret's reflux has disappeared and we are looking at being able to actually leave the house more often, although that brings us to the next examples of challenges....
-germs: it's no secret that the illnesses this winter have been extra awful.  Unfortunately, for kids like Margaret, they are in the "high risk" category for not only catching the illnesses but having a harder time fighting them off.   This, of course, has us more worried about Margaret catching anything and whether or not it could result in a hospital stay.  This means, we have to weigh our options when considering taking her places.  A couple of weeks ago we took her to the zoo and the mall...the next day?  She was sick, again!  Luckily, we've been able to battle all of her illnesses this year from the comfort of our home - I guess that's one "perk" of knowing the safe parameters for her oxygen levels and being able to check them at home...we have supplemental oxygen at home so if she ever were to drop too low, we would stay home and not have to risk going into the hospital unless absolutely necessary.  Seriously though, you guys, I might have become "that mom" who texts people before getting together just to make sure no one has been sick or around anyone who has been sick because I'm terrified of exposing Margaret unnecessarily! *Thanks to my awesome friends for being so understanding!!!

OT waiting room

-appointments: "Do you think I should call the pediatrician?" -- I think I probably ask Bill this weekly because of one thing or another with Margaret.  At this point, I don't even always leave my call back number when I leave a message on the nurses line as I'm pretty sure most of them have it memorized by now. 😉  We have a lot of appointments that we have to keep track of for Margaret.  We try to schedule cardiology appointments in the afternoon so Bill can come over from work for them but not too late because we don't want to have to drive home in rush hour...pediatrician appointments tend to end up being the most randomly scheduled ones -- this last month we found ourselves there 3 different times for 3 different illnesses.  OT appointments typically are Tuesday afternoons but there are a few random dates that I have to make a bunch of reminders for myself so that I don't accidentally forget about them...I'm slowly learning to use my phone calendar instead of the paper one, but I'm still not sure I like it.  We've had a lot of phone calls with our pediatrician's office over the last few months and this helps keep us from bringin

g Margaret in unless absolutely necessary.  We really have an amazing set of doctors and nurses following our daughter's care because after each appointment, the notes and follow-up information is sent to the rest of the team.  Just recently, Margaret was really sick and we thought she might have the flu (ended up being negative!) but, after a long and grueling unexpected appointment at the pediatricians office, the next day, her cardiologist called us just to check in and see how she was doing after having such a hard day!  Just another reason we love our cardiologist!!!
-traveling: simple things like going to church or more involved trips like a road trip to Duluth or flying somewhere are much more involved because we have to think of things like: where's the nearest hospital? how will we get the refrigerated meds and formula there without them spoiling? how long can Margaret handle sitting in her carseat before throwing up?  do we feel comfortable doing a tube feed while she's in the car or do we need to plan to stop?  will the germs on the plane be too much for her to handle?  should we bring her a mask that we know she won't wear?  Traveling is stressful...but we won't let the stress keep us from doing it!  

note: feeding tube hanging out of pants

-clothing: we need quick and easy access to Margaret's feeding tube.  This means, we have to plan her outfits so that we can do this without having to undress her especially since it's the middle of winter and SO COLD.  We've resorted to leaving the extension (the tube that connects to her and the feeding bag) on her mic-key button so we have easier access but this can be annoying because we run the risk of her getting it caught on something and yanking it out...ouch!  I refuse to cut holes in her clothes to make access to her tube easier.  I'm not sure why, but the idea of doing that just bothers me.  We had some awesome pajamas from Target that had an inverted zipper but they only went up to size 9 months.  A while back a friend dropped off some pajamas that she converted to the inverted zipper and Margaret still fits in them thankfully!  Not sure what we will do once she grows out of those but maybe mama will have to learn how to sew...😛 For real, though, we found a swimsuit for Margaret at Target that has snaps on the bottom just like a onesie!  How convenient and easy will it be for us to access her feeding tube when she wears that suit?!  
-meds: Margaret is not on a ton of meds but the ones she's on are pretty important.  One is a pill that has to be crushed and dissolved in water and 2 others have to be refrigerated.  This isn't super challenging unless we are planning on being away from the house during the day.  We usually will measure out the meds and pop them into our cooler with her formula, but sometimes when we are out for a full day, that cooler gets pretty darn full!  We need to work on better space management with that, but it works!  The hardest part is thinking through the day and remembering which meds to pack and then not accidentally giving them to her at the wrong time.
-feeding schedule: this challenge is becoming easier since starting our tube wean.  A few weeks ago, we were still feeding her every 3 hours minus one chunk of time overnight from 11:30pm-5am when she didn't get fed.  This schedule was exhausting and not typical for a child her age.  Our life literally revolved around this feeding schedule.  On top of it, we had the barfing from the reflux so it was kind of miserable.  We have now transitioned onto a much more typical schedule and it has been amazing!  We do 5 tube feeds each day and they are more flexible.  We are still learning what it means to be flexible, though, since we are used to being on the strict 7 feeds a day routine.  Margaret is starting to experience the sensation of hunger so we are hopeful that she will continue to progress towards oral eating and we can hopefully kick the tube feeds to the curb sometime in our near future.  

So, you see?  Our life with a child who has a CHD isn't any "harder" than any other young family would experience.  Our challenges are definitely different, but we have been lucky not to have to deal with things like skin, food or animal allergies (so far).  We don't have to deal with having crazy work schedules and trying to parent together while never seeing each other.  We have a nice warm home to spread out in and we don't have to worry about sharing our space with anyone except our family.  All families have their own challenges and it just so happens that ours looks a little different than most of our friends and family.  😊 Our normal just happens to include feeding tubes, heart surgery, oxygen levels, medical supply companies, etc.  We've got this 😉

**Look up the essay written in 1987 by Emily Perl Kingsley titled : "Welcome to Holland" -- we'll be the first to agree, although a trip to Italy was planned and sounded amazing, the fact that we landed in Holland is much more amazing than we could have ever imagined.  We wouldn't trade it for the world!
  

O-N-E

Can you believe it?  Our lives have been blessed with the presence of Mighty Margaret for exactly one whole year!  Where has the time gone?  

Happy First Birthday, little love!  Your Mommy and Daddy are so proud of you and we are excited to see what year #2 has in store for you (and us!).  Over this next year, we pray that you continue to shine bright and keep all of your doctors/nurses/specialists on their toes.  We're hoping for a few less terrifying surprises, this time around, though. 😜

This last year has been jam-packed with moments full of terror balanced out with moments that literally rocked our world.  Life with Mighty Margaret is oh so sweet and Bill and I continue to be in awe of our little warrior.  

This year, because Margaret's still a little questionable when it comes to stability with her heart, we decided to skip the whole "big 1st birthday bash".  The idea of having a big party and risking her being exposed to more germs and illnesses than she already is exposed to is a little too terrifying for us.  

We are looking forward to having a big party this summer to celebrate Margaret's Heartiversary - the anniversary of her first open heart surgery, at the end of July.  The weather should be much nicer and the germs, hopefully, less prevalent, at that time.  Stay tuned for more information about that as summer nears - it's going to be awesome! 

For now, we celebrate Margaret turning 1 by bringing new blankets to the CVCC/CVICU for families spending time this winter inpatient.  We exceeded our goal and ended up having 50 to donate!  We are so excited!  These blankets will be a much welcomed treat for families spending time in cold hospital rooms with their children.  Thanks to Sharen at With Hope and Grace for the blankets!!!

Next week will be a busy week for Mighty Margaret.  We have a handful of appointments to keep us busy and that includes a big cardiology check-up on Wednesday.  Prayers for a calm baby and good echo results are much appreciated!! 😊

Thanks, friends, for sticking with us and following our journey this last year!  Our family is blessed to have such a wonderful "tribe" surrounding us and we hope you all know how much we appreciate you! 

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!!

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. 💕

Heart Parents

"Your baby has a rare form of heart disease."

Today is a day that marks exactly 1 year since we were catapulted into a terrifying new world.  A world we knew nothing about.  

We decided to drive separately to our appointment so that we could both head to work after. Admittedly, we were both kind of excited to get an opportunity to see our precious little miracle twice in one week.  Right away we noticed how welcoming the clinic was and felt extremely comfortable being there.  We went back for our ultrasound where we made small talk with the tech and for once, our little peanut finally seemed to "behave for the camera" (she must have known that this was a very important appointment!).  The cardiologist came in and she and the tech talked a lot as they collected various images of our baby's heart.  We had no idea what they were talking about since all of the terminology that now is second nature to us was jargon to us at that time.  It was very intimidating being in the presence of such an important doctor and we were thankful to get such personalized attention from her.

our first drawing of her heart

For the next part of our appointment, we were led across the hall into a consultation room.  It's kind of exactly how you picture it in the movies -- minimal "decorations", an easily cleanable stiff couch, small table and a couple of chairs.  As we waited for the doctors to come in, I felt myself becoming nervous but didn't really know why.  After all, we were just waiting to hear that our baby's heart was totally fine and we would be dismissed back to our regular clinic for the remainder of the pregnancy...oh boy, how wrong I was!

The cardiologist and OB came in and got straight to business.  They asked us to share with them our perspective as to why we were referred to their clinic.  We naively told them how our baby is stubborn and didn't let the previous tech and doctor get clear images of her heart so we needed confirmation that her heart was healthy.  I remember watching as the cardiologist's facial expression showed a hint of disappointment before becoming extremely serious.  The next few words that came out of her mouth changed us in a way we would never have expected.  It's all really quite blurry but little pieces of that appointment stick out to each of us.  

One of my strongest memories of this day was looking at Bill and thinking how strong he is and how I couldn't believe how level-headed he had remained while talking with the doctors.  I tried my hardest to keep my composure and not cry but it was too hard.  I finally just let myself cry and I don't recall asking any questions.  I was too stunned.  Thank God Bill was taking in as much information as he could and asking questions because I was most definitely not!

Bill remembers this moment like this:  It really felt like a ton of bricks. The next half hour was kind of a blur. The cardiologist drew us a picture and explained the diagnosis to us. She said our baby would need multiple surgeries. Oh, and try not to spend too much time on our own looking up the condition. Yeah right!

It was extremely hard to not get stuck in the "why us?" mentality.  We had been through so much: several years struggling with unexplained infertility, two big surgeries for me, several failed rounds of IUIs, 1 failed round of IVF which resulted in an ectopic pregnancy and then finally pregnant with our rainbow baby.  We honestly thought we "deserved" this pregnancy and we "deserved" to bring a healthy baby into this world.  Thankfully, our selfish mindset didn't last too long and we knew in order to prepare for this new adventure we were going to need to shift our focus.  We agreed to spend the next 2 days allowing ourselves to be sad, angry, confused and cry but come Monday morning, we were not going to let each other sink into a dark place because of our baby's diagnosis.  We needed to continue to be excited and prepare for our little miracle's entrance into this big crazy world.  We were being entrusted with an extra special baby and it was going to be our job to protect her.

After our appointment, we both called into work and started our weekend early.  We needed time to begin to process everything.  I distinctly remember being so grateful that I rarely call my sister since we usually text.  I think the phone rang maybe once before Jessie had answered and she knew something was up right away.  Talking with her while I drove home helped since, remember, Bill and I both had driven separately to the appointment.  Sharing our "news" with the rest of our families and close friends was difficult.  We remember dreading having to tell people of our baby's diagnosis.  Often, they had more questions than we had answers to and it was exhausting trying to field all of them.  We knew they were going to get on Google so at times we withheld information with hopes of not freaking them out even more.  You guys, if I have any advice for you: STAY OFF GOOGLE! Seriously - get your medical information from medical professionals!! 😉

Our new team had engulfed us at the clinic had already started putting various services, appointments and whatnot into place.  We made it very clear that we needed to speak with any and all professionals who would be working with us and our baby, including needing to meet with our child's soon-to-be heart surgeon --- still so hard to believe.  We received so many hugs from everyone and at the same time, the sadness was met with hope.  We left this office feeling so many mixed emotions but can confidently say, among them, was a feeling of being loved.  We were going to be okay and our baby was going to be closely monitored.  My former principal's staple phrase of "We got this" became a phrase I would say to myself daily just to remind myself that we were not in control and the only thing we could control is how we reacted to the cards we had been dealt.  💕

*side note -- we managed to go through every single detailed (and frequent!) ultrasound without finding out that our little warrior was actually a princess warrior -- kudos to the amazing techs, doctors and nurses who helped us keep our goal of not finding out until birth! 

on the spectrum of TOF, our baby was on the more severe side

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!!"