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!

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 Cath #2

Heart Cath #2 is done!  🎉

We checked in yesterday afternoon so that Margaret could have her pre-op testing done and then stay overnight to get some fluids.  It was important to make sure that she was well hydrated for this procedure.  

Ready!

Pre cath snooze...

The original plan was to get started right away this morning at 8:30am but unfortunately things got delayed a few hours because there was an issue with the humidity in the operating area on the floor.  Thankfully, Margaret's procedure just got pushed back a few hours unlike a couple of other procedures which got moved to different days.  

After -- so confused

Margaret was taken back around 10:45am.  She was definitely not happy to be in someone else's arms and screamed the whole way there right through the CVICU.😟  
This morning we were able to connect with the cardiologist who would be doing the heart cath and we discussed the risks and benefits of what they hoped to accomplish today.  We were reminded that Margaret's Pulmonary Arteries are really quite small and there was the possibility of only being able to address one of them during today's procedure.  The plan was to balloon the arteries and see how much they could increase their size and place stents if needed in order to keep them open wider.  Remember, she has had some work done with these and there is scar tissue that makes them a little tougher to work with because it causes the tissue to be more stiff (like what you experience with any type of scar tissue).  The decision to coil any of the MAPCAs would be made during the cath after they could determine wether or not necessary for now.  Right now the #1 priority is to address the pressures in the right and left ventricles and get those to be at a more desirable "balance".  

At 2:15pm we got the call from the nurse that the procedure was done!  Things went much quicker than anticipated, but results are promising and we are happy!

Here's what we know about what the cardiologist was able to do during this heart cath...

• Margaret's left Pulmonary artery was ballooned and a stent was placed.  This artery went from around 3mm to around 7mm -- Awesome!  Once this was done the pressures on each side of her heart already looked better!  Great news!!
• The right Pulmonary artery is smaller than the left and a bit more difficult to work with.  The cardiologist was able to balloon it and it went from around 1mm to around 2.5mm -- too small to make it worth it to put a stent in at this point.  
• We will have a follow-up appointment next week sometime and talk about the results of the Cath and do a quick check on how Margaret's doing since discharge.
• In about 6-8 weeks we might have to get a CT scan to get more images of Margaret's heart -- she had one of these done when she was born.  It gives the team good images to make a plan.  
• The pressures between her left and right ventricles look much better having intervened with her Pulmonary Arteries.  They are not where we hoped they could be, BUT they are much better and her heart should like the change.  😉
• Possibly the next heart cath could be as soon as before the New Year. 
• The overall reality is that Margaret will have many heart catheterization procedures but this is okay because these are much easier to recover from than open chest and open heart surgeries.  We hope to not have to put her through another big surgery until it is time for her Pulmonary Valve to be replaced -- we are estimating that to be around 2 years old.
• It was decided not to attempt to coil any of Margaret's MAPCAs at this time.  They do not seem to be causing any issues and one larger one actually seems to be helping pick up the slack for her teeny right PA.  

Our evening has been mostly uneventful.  Margaret even was able to jump back into full feeds at 8pm after doing great with a full feed of Pedialyte.  Feeds always stress us out because we know she still struggles with bad reflux and we hate to see her suffer with that on top of being sore from her heart procedures.  

We've been a little late to post an update because we have been so tired and really Margaret has been happy and wanting to play so all of our attention has gone to entertaining her.  We are very much looking forward to being discharged tomorrow!  

SO happy but SO exhausted.

Thank you for the love, prayers, good vibes, etc.  We continue to be thankful to have such a huge village of family and friends surrounding our family as we continue to navigate the world of Congenital Heart Defects.  As tough as this can all be, we continue to be in awe at how blessed we are! 💖

Post-Op Update

ready to go!

Today was our post-op appointment at the Heart Clinic.  Overall, things look good and we are happy with the progress she's made since her big surgery.  Can you believe how these heart babies bounce back SO fast??!!  We are in complete awe - seriously!

super irritated with the x-ray

We will go back in 3 weeks to have an echo done and follow-up with the cardiologist again at that time.  The pressures in the left and right sides of Margaret's heart are still a concern as are the size of her pulmonary arteries and the small MAPCAs.  The echo will give the team an opportunity to get an idea as to whether or not her PAs are growing at a sufficient rate or if they need to place a stent.  They will also be able to get estimates of the pressure measurements to see if they have changed at all since surgery.  After the echo we will discuss scheduling a heart cath for mid-September.  We are a little bummed to have to be going down this road already, but the anatomy of Margaret's heart is complex and we knew this all along.  A heart cath is much less invasive than open heart surgery and with the amazing advancements in technology we are extremely thankful that it is even an option.  During the heart cath the surgeon and cardiologist will be able to get precise measurements of the pressures, see the blood flow, place a stent (if needed) and be able to coil the unnecessary MAPCAs.  

trying to distract her while we waited

At this point, Margaret's heart is functioning well but one way to look at it is that it just needs a little more work to be done for a while.  The need for a heart cath does NOT in any way mean that her open heart surgery was not successful.  Actually, her surgery resulted in what the team wanted and we always knew there would be a cath scheduled sometime after surgery.  

Our appointment went smooth and was relatively quick, today.  The x-ray of her lungs looked great and we get to wean off of lasix over the next week and by then we will be done with the last med from the hospital stay as well.  This will leave Margaret only on a small dose of aspirin every 48 hours (so many alarms/reminders set to remember this one...it's kinda important...!) and her reflux medication.  This is remarkable for a kiddo who has a "broken" heart!  Definitely thanking God for her great blood pressure and sats! 🙌

oops - slept through lunch w/auntie

Margaret is absolutely thriving at home.  She had a couple of tough days and very rough nights but we seem to be getting back into our old routine thankfully.  We haven't gotten out of the house too much as we want to let Margaret's sternum heal and it's hard enough keeping her from being too wild at home let alone out and about where she tends to get extra excited!  We have 3 and a half more weeks of sternal precautions.  Technically she's allowed to do some tummy time now but she hasn't been very happy with it so we aren't pushing it.  

Shout-out to Aunt Jessie for treating us to a delicious lunch after our appointment.  Margaret says she's sorry she slept through most of our time together and promises to be more alert and exciting next time.😘

getting too big for this swing ha!

OH - for those wondering, the teeth that appeared to be ready to pop through while Margaret was in the hospital have NOT popped through yet.  The saga of teething continues...😜

That's all we've got for now!  Thank you for keeping our family in your thoughts and prayers.  

Pre-Op

"The worst heart defect to have is the one your baby has."  --- Amen.

Today was long and Mighty Margaret was a complete rockstar.  Our morning schedule was jam packed and Margaret wasn't going to miss ANY of it.  The little lady who usually takes multiple naps before even lunch time was wide awake the entire time we were at the hospital.  She had her longest stretch of completely alert time today from 8:30am-12:30pm.  It was amazing to watch her every second.  

We started our morning at the Children's Heart clinic where I braced myself for a long and torturous ECHO where I just knew Margaret would scream through the whole thing.  Guess who didn't scream!  Margaret was perfect.  She let the ultrasound tech get good images and only started to get fussy towards the end.  It definitely helped that the TV in the room had Mickey Mouse on -- this little lady is already in love with the Mouse and we can't wait to take her to Disney!!

Next up was meeting with Margaret's favorite cardiologist.  Margaret's height, weight, sats and BP looked good and we think her doctor was excited to see how much she's grown.  She certainly was excited to see him and gave him lots of smiles and excited arm/leg wiggles.  She also let him listen to her heart and lungs while she stared him down and tried to "help" by grabbing the stethoscope   We got to ask a lot of questions and get a better idea of what to expect for Thursday.  Every time we bring Margaret to the Heart Clinic for appointments we are reassured that we made the absolute best decision in pursuing her care there.  The love and patience this clinic has for their patients and families is phenomenal.  

When we finished at the clinic we headed up to the Par 4 unit.  This is where we will start on Thursday and also where the waiting room is located.  The Child Life Specialist met us at the check--in desk and she was with us for most of the rest of the appointments.  Her job is to help make sure we are fully informed and prepared for what Margaret will look like after surgery and in the coming days.  It's a shock to see your baby with tubes coming out of her everywhere so we are thankful the hospital has people on their teams to help prepare families.  

Our nurse today was the same one we had a month ago for Margaret's cath -- she was so excited to see Margaret again!  

Babies with heart conditions are often very difficult to get blood draws from and Margaret is no exception.  The lab tech came up to draw blood and unfortunately after checking both arms and sticking her twice, he was unsuccessful.  This was hands down the hardest part of today.  Margaret was so upset and she let us all know how she felt.  Thankfully she's pretty easy to calm down most of the time and the fabulous nurse advocates strongly for her, too.  2 unsuccessful pokes and then they call in the big dog...the anesthesiology doctor.  She was able to get 1mL of blood (they needed 5 for all of the panels and tests they are supposed to run...) from a vein in Margaret's hand.  This was a good start --- time to prioritize those tests until they could get more blood on Thursday when our little diva would be under anesthesia.  The lab tech came back and was able to do a heel prick to get some more blood.  Poor Margaret was exhausted by this time but she kept her eyes on everyone who came into our room.  She wasn't about to miss ANYTHING.

We had a chest x-ray done as well and by this point Margaret was way over tired after skipping all of her morning naps and had a full belly from having finished one of her feeds while being on the unit.  Bill and I kept saying to each other how we couldn't believe that she was still awake!  Too much excitement and new people to get to know I guess.  

Next up was the EKG.  Usually kids don't mind these but Margaret was still upset about all of the pokes and blood draws so she was pretty sad about this too.  The tech let me hold her and that helped.  *look at that sad little face!!!!  

The last thing on our agenda was to go over eating restrictions for the day of surgery, a few reminders of what to remember to bring and then we were off!  Time to head home and debrief with each other and check in with each other's sanity.  We might have made a detour through the DQ drive-through for a little ice cream therapy on our way since we both managed to keep calm and I didn't cry during all the terrible blood draw attempts.  :)

That's it for now!  Tomorrow is our "day of rest" and we will be soaking up all the snuggles and frantically packing up bags for Thursday.  We are not ready for this, but we are.  Margaret is going to continue to kick CHD's butt and show the world just how Mighty she is. We are SO SO SO proud of our tough little warrior.  

**seriously - that smile.  I've never met such a happy baby and I'm so blessed to be her mama!