OHS #2

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

5/22/18 - Open Heart Surgery #2

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



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

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

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

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

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

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

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

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

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

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

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!
  

Feeding Tube Awareness

Hello, friends!

Phew.  It's been a busy few days and I'm behind with what I was hoping to share this month and week. I'll be playing catch-up over the next couple of days.  For now...here's my post I meant to share last week!

Did you know that February is Heart month?  💕 February 7-14th is CHD Awareness week?  You've probably noticed that I'm in over-share mode on Facebook and Instagram, eh?  Well, Feeding Tube Awareness week was February 5-9th.  I'm taking a mini break from heart month to focus a little on Feeding Tubes today.

I've gotten quite a few questions about Margaret's feeding tube so I'm going to do the best that I can to answer them in today's post.

Why the tube?

NG Tube

Margaret had her first surgery when she was one week old, however, she was prepped for surgery the night before and that meant she was intubated and "kept comfortable and still" overnight.  She only had barely 6 days to eat by mouth before her surgery.  Unfortunately, those first few days of trying to nurse were not super successful.  She (and I!) finally seemed to start to figure it out around day 5.  Although she was able to nurse, she was not efficient.  It took her a long time to get anything and that exhausted her.  She would nurse for a little while and then fall asleep.  Margaret's heart was working too hard to be able to handle eating the amount that she needed.  Suck/Swallow/Breathing is extremely difficult to coordinate when you're a newborn with a severe congenital heart defect.  
After her surgery, when she was able to start being fed, she did try to use a bottle and we tried nursing.  She still struggled.  At this point, she was "shunt dependent" meaning, her heart was still working extremely hard and didn't have energy to spend on eating.  The shunt would allow us to give her time to grow and also give her pulmonary arteries a chance to grow before the big surgery.

What tube?

PEG Tube

Margaret started out with a nasogastric (NG) tube so we could monitor how much she was getting and make sure she got enough calories.  This tube went in her nose and down her throat straight into her stomach.  She had this for pretty much her entire hospital stay.  She got really good at pulling those out which meant nurses had to replace them -- something I would never want to have to do.  
At one point during her stay, Margaret had a different tube that went even farther down and bypassed her stomach completely.  This tube went into her small intestine and is much harder to place - you have to have an x-ray to make sure placement is correct.  This one ended up coming out on accident and the team agreed she would be fine continuing with the previous NG tube instead.  

Mic-Key button

Before coming home, she had a PEG tube placed which is a feeding tube in her belly.  The tube goes straight into her stomach -- it was pretty exciting to have her sweet little face finally free from the NG tube 

How long will she have the tube?
This question is hard.  We do not have a set deadline for when we could expect to have Margaret's feeding tube removed.  She will have it until she consumes enough daily calories orally and consistently.  Do we wish she didn't have to depend on it for her daily calories and intake?  Of course!  All parents want their child to be able to eat and grow!  But for now we have it and at least we know we can make sure she doesn't get dehydrated and if anything were to come up, we have easy access to give meds and formula. :)

That all being said...
Last weekend we started phase 1 of a wean plan.  We have cardiology, pediatrician and GI approval to move forward with trying to wean Margaret off of her tube feeding so we are taking full advantage of the timing and jumping right in.

We are working with a consultation group created by other moms who have gone through having their children being dependent on feeding tubes and successfully weaned them off of it.  These women have feeding therapy, dietician, social work, and parent coaching, etc. backgrounds so we are confident we are in great hands with them.  Phase 1 includes cutting down the number of feeds we do each day form 7 to 5 --- HELLO, SLEEP!!!  We have officially cut out ALL late night feeds and a certain mighty gal has been sleeping completely through the night!  We have cut her overall tube-fed calories by around 30% and her reflux has completely stopped.  This is super exciting but also makes us a bit angry because we had brought up our concern of Margaret being overfed for months and no one would listen to us.  Everyone freaks parents out and insists these kids need all of these calories so making a cut to them without provider support wasn't an option.  The fact that Margaret was throwing up SO much but yet still growing and maintaining a really good growth curve despite the vomiting was always a red flag for us as parents.  Being first-time parents to a child with a severe congenital heart defect makes things more complicated and we are hesitant to question the "professionals".  Thankfully, we're becoming more comfortable with speaking up and advocating with each appointment.

The next couple of phases for our tube wean include cutting Margaret's tube fed calories down and it's daunting.  We are hoping and praying that she continues to show increased interest in eating and drinking.  She's been doing well with snacking on some foods like goldfish, Kix and nilla wafers but the interest in wet foods has been limited.  She at least is interested in playing with all kinds of foods so that's a great sign!  Her water intake has been amazing lately, too.  She loves her weighted straw sippy cup and will even scream at me if I'm too slow to get it filled in the mornings!  Progress! :)

We plan to take our weaning plan slow, but not too slow.  We want to move her through each step but not push too hard.  We need to continue to teach her that food is safe and she has control.  We have some BIG family plans at the end of March and our goal is to have her eating some meals orally by then.  Hefty goal?  Yep, but we're hopeful!

Let us know if you have any more questions about Margaret's feeding tube!  We are happy to share  and help spread awareness.

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!   

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