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

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!!

It's been a while!

Whoa!  It's been almost a whole month since we've shared any updates which I guess could be considered a good thing!  No updates means no major changes or happenings...right? 😏

she LOVES riding in carts

We still have about a week and a half until our next cardiology check-up and it has been kind of weird to have so much time between appointments.  Our job has been to check her sats every now and then to make sure she's staying within her parameters.  So far, so good, although we're noticing that she's trending a little lower with her highest level but still w/in 80/90s.  Occasionally she will look a little off to me and by the time I get her pulse ox on her she's pinked back up, but we make note of it and will discuss with her cardiologist at our next appointment.  The good thing is that she's staying stable and we haven't had to put oxygen on her in quite a while.  We tried to this evening when she popped into the 70s but thankfully she came back up pretty quick and the fact that she completely fought the nasal cannula was ok.  It's easiest to sneak it on her when she's truly in a deep sleep, but even then she wiggles it off -- can't say I blame her!  

A few highlights since the last update...
- Margaret had her 9-month visit with her favorite pediatrician.  It was a great appointment and mama had some time to just sit and chat with the doctor.  He's truly so great.  We really could not have landed with a better clinic or team there!
- reflux has been taking over our life lately and we continue to pray and hope that it will calm down soon.  
- Margaret had her first trip to the pumpkin patch!  She loooooooved it and we had so much fun as a family.
- we have an appointment with a new dietician in a couple of weeks!  This one is through the GI clinic and has worked with a lot of experience with children who have feeding tubes.  
- Margaret and mommy go to weekly OT to work on feeding therapy - it's nice for both of us, mommy gets some adult interactions and Margaret gets to show off her growth from week to week.  Still not eating anything orally but last week she did take TWO sips of warm water from a sippy cup!!  It. Was. Awesome.  

- we are doing daily exercises to stretch Margaret's lips and mouth muscles.  Thankfully she seems to think they are silly and will giggle and tolerate them most of the time.  Her top lip tie cannot be corrected right now since she is currently on a daily dose of aspirin.  However, the stretches seem to be helping with that, so we are excited to see that progress!
- the most exciting update is that Margaret is really starting to enjoy her mornings at daycare.  She even started to put her arms out to her favorite teachers when mommy drops her off AND She's starting to play around on the floor instead of just wanting to be cuddled and held all morning.  😍  Say an extra little prayer for these awesome daycare teachers because they not only genuinely love our little girl but they have dealt with learning how to use her feeding tube and pump, deal with daily barfing due to her reflux and have been keeping a nervous mommy and daddy updated with her progress.  They are saints!  
- Margaret's early intervention teacher from the school district brought a red cube chair over a while ago and she loves it.  It's so cute to watch her sit and stand and sit and stand and be so proud of herself when she does it.  We're now working on spending more time on her tummy and learning how to sit up from her tummy and how to get from her sitting position into crawling position.  No crawling yet, but she's close. So, so close!  We won't be surprised if she starts walking before she crawls, though...
- Margaret is putting together 2-syllable consonant sounds and it's the cutest thing ever.  She's learning that "dada" means daddy, and we're consistently hearing "mama" when she's mad/sad, and "baba" and "papa" are pretty consistent as well. 

It's so much fun watching Margaret learn new skills and experiment with her sounds.  She really is the poster child for happiness and she sure makes both of our hearts full.  

Hard to believe we're nearing the end of October.  We'll update after our next cardiology appointment soon! 💜