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

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!!"

Beginning the road to recovery

look at that gorgeous number!

Now that Bill and I have had an opportunity have a good night's rest (seriously so grateful for the Ronald McDonald House!) we feel comfortable sharing a little bit more about where we are at and what happens next.  We are trying to give enough information to give a good picture of what Margaret is going through because of her CHD without sharing too much and getting too personal.  We truly hope we are spreading awareness and helping shine the light on what it means to have a child with a CHD.

The plan moving forward is to take things slow and let Margaret tell us what she can handle. We all know way too well that Margaret likes to throw surprises at us and we are determined to keep those surprises to a minimum during this hospital stay.  I've said it a million times before and I'll say it a million more times: this hospital and the staff here are phenomenal.  It's comforting to know that the nurses taking care of your precious daughter remember her and are excited to see how much she's grown.  

Always with a bow!

The breathing tube will stay in for at least today to help Margaret's body relax.  The pressures in her heart are still not quite where they want them so she's on nitric oxide to help keep her heart from working too hard as a result of the pressures.  This is being very closely monitored.  

Margaret had bleeding that might be concerning for some, but because her team is so amazing and proactive have been working to get that to calm down.  It already looks way better than last night when we first saw her after surgery.  She's had a couple of x-rays to make sure her lungs are clear and there isn't blood flowing into or around where it shouldn't be and putting extra stress on her heart.  All seems well so far and the x-rays have been reassuring.  

Last night Margaret decided to remind us all just how spunky she can be and kept the night nurses busy!  She is definitely a wiggly little lady and ended up earning herself a stronger sedation medicine because she was trying to fight the sedation too much.  Margaret is at the age where rolling around starts to become appealing and one of our concerns going into surgery was how the heck we will keep her entertained and still during recovery -- this is definitely going to be one of our biggest challenges as Margaret does not sit still.  She loves to move and if we blink too fast she will be running circles around us all very soon! (Aunt Jessie - we KNOW you're patiently waiting for that day 😉 ).  Anyways, Margaret seemed to be trying to roll over last night so they made a switch to a different medication and she's relaxing now and being closely watched for wiggles.

Pink piggies!!!!

We hope to slowly decrease vent supports today and maybe tomorrow start talking about extubation.  Only time will tell and Margaret will let us know when she's ready for that.  We do not want her to get extubated too soon and end up needing a heart catheterization or another procedure which would mean being intubated again.  

We will be taking it easy and trying to think of how in the world we can express how much we appreciate the love, support, prayers, good vibes, EVERYTHING that each and every one of YOU has sent our way.  You all rock and we hope you are maybe learning a little about what it means to have a child with a Congenital Heart Defect.  

Surgery day

After meeting with the surgeon who is performing Margaret's procedure we find ourselves better understanding what they are aiming to do today and have a better grasp on how complicated this surgery can be.  She's basically having a combination of procedures rolled into one.  The risks of the surgery are scary but really there are no other options.  We are blessed with this precious miracle and watching her kick CHD butt is humbling.  She's so strong and here mommy and daddy can't wait to watch her grow and continue to "wow" the world!

*picture drawn by Dr. Moga while explaining everything to us

Here's a rundown of the day ... *I'll update as we gain more information and updates from the OR...

10:23 am - Margaret was taken back to the OR by the nurse anesthetist. It could be an hour or maybe 2 before the procedure actually begins. Margaret sure wiggled her way into every nurse here in Par 4's heart this morning. Lots of smiles, giggles and squeals while we readied her for his big day. We watched the nurse take her through the big doors and thankfully Margaret was all smiles and very distracted by this new friend who was giving her attention. 

11:52 am - the phone in the waiting room finally rings and we get "the call" saying surgery has started.  Margaret is doing well.  

2:19 pm - Cardiologist quick update: Dr. Moga has "everything opened up and he's able to see what he needs to have access to.  Observations so far:  the right Pulmonary Artery is slightly larger than he thought it was and the left Pulmonary Artery is slightly smaller than he thought.  Not good news, not bad news!  Slow and steady!  
*at least there is a L&O marathon on to distract us...

4:45 pm - DONE!  Great news on all fronts - Margaret was very well behaved for the whole surgery.  The VSD is closed (yay!).  The larger collateral was re-reouted to be connected to the small right pulmonary artery.  The Melbourne shunt was disconnected and the pulmonary arteries were connected to the new conduit -- this was extra tough because of how small the PAs are, but Dr. Moga is a miracle worker so we had no doubt that he could do it ;)  The pressures on the left and right sides of the heart will be closely monitored to make sure they end up at levels that are more desirable.  As of right now they are equal and that is not what they should be.  -- We are currently waiting for Dr. Moga to come in and tell us more, but for now, we are elated!!

It will still be an hour or more until we get to see our Mighty Margaret but you know we are feeling relieved and have some renewed energy knowing our baby girl has done so well.  

 

*That's 2 super happy parents right there!!  We cannot wait to see our girl.

5:30 pm - We had an opportunity to talk with the surgeon.  He is very pleased with everything and we are overwhelmed with relief and excitement.  There is a long road ahead but today was a giant leap in the right direction.  Mighty Margaret is definitely showing us all just how Mighty she is :)  Living up to that nickname for sure!!  

Margaret's diagnosis

So - what exactly is wrong with Margaret's heart? <------ we get this question a LOT, so here's my attempt to explain her CHD.  *Remember, this information is coming from a mom, not a medical professional and there's still a chance I don't fully understand every single piece of the puzzle but this will give you an idea.

Tetralogy of Fallot with Pulmonary Atresia and Major Aorto-Pulmonary Collateral Arteries

TOF/PA/MAPCAs -- click the link to see a .pdf put out by the Heart Clinic

When I was pregnant, it was difficult to know for sure as to whether or not Margaret actually had any Pulmonary Arteries, but it was clear there definitely was no Pulmonary Valve.  The MAPCAs were an added complication in that they were difficult to see and identify for certain as well.  Fortunately, although she has some MAPCAs, hers are not as severe or large in number as they can be.  It's my understanding that these MAPCAs develop as a sort of way for the heart to make up for not having pulmonary arteries (or sufficient arteries).  

TOF is basically a defect where there are 4 main issues and the result is not enough oxygen ends up in the blood being pumped throughout the body.  Pulmonary Atresia and MAPCAs are an "added bonus".  

*This is the picture the cardiologist who diagnosed Margaret's condition with drew when she first sat down with us.  It was scary and overwhelming but it's helpful to look back at and try to better understand our little warrior's heart.

*This is a picture the surgeon drew for us when we met with him a week after our initial diagnosis.  He proved right then and there how much he knows and his confidence was obvious!

Here is another good site to read up on TOF put together by Boston Children's Hospital.

Many times babies who are born with TOF are labeled a "pink" or "blue" tet but honestly we don't know what Margaret would fall under.  She was born nice and pink but she did require a shunt surgery within her first week of life and her team never actually used pink or blue to describe her.  It's really not important but you do hear people talking about pink and blue TOF often in the CHD world.  

The big surgery Margaret will be having is often called the "full repair" because the ultimate goal is to repair the four defects.  This isn't always the case for each child and some require multiple surgeries to finish the "repair".  I'm not sure how I feel about the word repair being used to describe what is going to happen to Margaret's heart tomorrow because I think it gives a false hope of being "done" and her heart being "fixed".  This isn't the case.  Margaret will always have TOF and her heart will always be different and require follow-up care by the cardiology team.  Margaret will also have future surgeries to replace her Pulmonary Valve throughout her lifetime as she grows.  Eventually the goal is for those to happen via heart catheterization procedures though instead of open heart surgery.

The major things we hope to have accomplished tomorrow during surgery in bullet form:
- undo the Melbourne Shunt that was done when she was 6 days old (basically put her pulmonary arteries back where they should be and connect them to a conduit)
- close the VSD
- build and place a conduit/pulmonary valve
- re-route one of the bigger MAPCAs to utilize it more efficiently/effectively

We've been warned several times that there's a possibility of the VSD not being closed fully because Margaret's heart has been working with it open and closing it completely might be too much pressure for it.  The surgery will take place in the hybrid operating room so after completing everything they will do a heart catheterization to check pressures and see how her heart holds up before taking her off bypass.

Margaret's pacemaker will remain in her for now as well.  She has a spunky history and it's best to keep it in and see how she recovers from this major surgery before any decision can be made about her possibly not needing it forever.  We aren't in a hurry to have it removed anyways.  Not having to worry about hear heartbeats not being in a normal rhythm is something we don't want to have to worry about if we don't have to!

And here's a picture of Mighty Margaret from church last week.  She's recently decided that she likes to make faces at the people who sit behind us and she LOVES to squeal during the quietest parts of service. :) **check out those cheeks!! 

Surgery - the BIG one

Thursday, July 20th, 8:30am

Mighty Margaret is scheduled for her 3rd heart surgery, although this one is "the big one" as it will be open heart surgery.  They call this surgery her "full repair" but we do not yet know what exactly will be done.  We know what the overall defects are but Margaret's heart is complex and a lot will be determined during the surgery.  Pre-op appointments are on Tuesday, July 18th and we should have a better understanding of what to expect of the surgery after those appointments.  

We ventured out to take some pictures of Margaret in her Mighty Margaret outfit.  Here are a couple!

And a few wearing another favorite onesie:

4th of July

We had some fun taking pictures of Margaret in her Fourth of July outfits -- yes, she had several!  Here are a few snapshots.

This girl loves to lounge in her pool. :)

Photos

I made a promise to myself that I would learn how to use my nice camera when we had a baby.  Well, Margaret is here and I've been working on keeping this promise because Bill and I both agree that we want higher quality photographs of our little lady and family instead of always only having iPhone quality ones.  

Here are some shots from when we were still in the hospital a few days before we were discharged.

And a couple from a trip to the park...*check out that pout! :)