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!

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

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!!"

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! 💖

up, down, backwards, sideways...FORWARD

the many faces of Mighty Margaret

Today we are composing this update with an overflowing amount of excitement!

Our weekend has been anything but boring.  Margaret had a very rough couple of days (again) and the result was a consult with the pain and palliative care team.  It was decided that the oral medication that had been prescribed in order to replace the IV med was not working well enough.  Apparently most kids can't tell the difference between the two meds but there are some who can...no surprise to us that Margaret can totally tell the difference.  She can also tell the difference between certain PPIs that she's been on for her reflux, but thankfully we figured that one out finally with help from her truly amazing pediatrician and team.  I'm hoping somewhere in Margaret's chart it's written in giant red letters the words:  VERY SENSITIVE TO MED CHANGES!  GLACIAL PACED-WEANING ONLY. 😆

Anyways, back to this weekend.  Yesterday, after consulting with the team, the dosage for the oral medication was increased to more of a moderate level - she was previously on a minimal dose with hopes that it would do the job.  Mom might have had a mini breakdown and finally told the doctors that enough is enough and clearly the current plan was not working.  The new dose seemed to be working MUCH better.  Phew. 

Advocating is hard.  I have a whole new outlook on how the families I work with must feel!

Overnight Margaret was able to get a solid 5 hours of sleep before waking up fussy.  She was able to calm down after a while and actually went back to sleep and woke up around 8:15.  We celebrated by accidentally disconnecting her extension from the feed pump and spilling formula all over me.  Whoops.  We couldn't help but laugh because that's totally something that has happened many times at home and it felt like we finally were able to think about something other than withdrawal.  

finally got some sleep!

our little fam bam

Margaret has been in a great mood and we can tell she's feeling a million times better.  It's absolutely crazy to think that less than 2 weeks ago she had open heart surgery!  It's kind of funny because I used to joke with Bill prior to surgery that this time we would bring her home with the glue still on her incision...guess not this time as the last piece of glue fell off yesterday.  Maybe next time we will be able to skedaddle out of here a little faster.  It's all up to Margaret, that's for sure.  

Overall, we are all feeling refreshed and super excited because discharge orders have been written and now we are just waiting for everything to be done!  We are going to RUN out of this place.  (discharge usually takes a while so we just hope to be home later this afternoon). 

adding more to her Beads of Courage

Status Change

Today was a big day!  Margaret got switched off of a couple of IV medications and her pain med is now an oral one.  Of course, for Margaret, this means it goes into her g-tube so she doesn't have to actually take it by mouth - guess that's a "perk" of having it!  She seems to be starting to be more okay with being awake, too, but it's definitely still tough.  Child Life brought us some fun toys to play with and help get her moving a little more.  We've also seen PT and OT this week already and both have some good advice for helping get her movin' and groovin'.  

the look of pure exhaustion and maybe annoyance

This morning we got the go-ahead to have her arterial line that was in her left arm removed. 🎉Margaret was super cranky about having arm held straight while removing the line and then extra upset about her arm being held while the bleeding slowed.  She's such a champ.  SO tough.  I'm constantly in awe watching how she goes through all that she has to endure and still manages to flash us that adorable little smirk of hers.  I definitely would have put up more of a fight if I were in her place, but it goes without saying that both her daddy and I would switch places with her in a  heartbeat if it was possible.  Seriously though, look at that face!  How can you not feel terrible when she flashes that look at you...if looks could kill...

new room!

The other big news is that we got moved down the hall!  Margaret is no longer ICU status and that means a new room with a new view and a bit more privacy.  Margaret got switched out of the big bed and into a crib when we got to our new room.  She even played with me a little bit today in between trying to sleep.  

Since her art line is out, that means mom and dad finally get to hold her again (with help from the nurses, of course).  She still has a few lines (in her neck and foot) and is on oxygen.  We weren't kidding when we said weaning will be careful and slow for this mighty little warrior.  Overall we're making some great strides forward and home shouldn't be too far away.  

back where she belongs

On our way home last night "mom guilt" hit hard and a million questions raced through my mind as it felt wrong being home without our leading lady.  One highlight of being home, though, was finding the bows that I had impulsively ordered off Amazon were in the mailbox!  Yay!  🎀 Those of you who know us know that we've been spending our Sunday evenings taking the Dave Ramsey FPU course so it's become a running joke in our house to comment about whether or not Dave would approve of some of our spending...he most definitely would not approve of my ordering of bows but when your infant goes through open heart surgery, you make sacrifices.  😜 We'll make up for it in our August budget. ha!

starting to be interested in playing!

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.  

Heart Cath

Today was a big day!!! Margaret went in for her heart cath. She went in a little before 1pm and we were able to finally go back to see her around 5pm. Thankfully, she's been sleeping and keeping her body nice and still so the site where the catheter was put in can clot and heal.  🙏🏻Praying she remains calm through the evening! 

We are settled into our room in the CVCC for the evening and the plan is to monitor Margaret's sats and BP overnight. She will have an X-ray in the morning and then we should be heading home! 

We met with the cardiologist who did the heart cath and Margaret's primary cardiologist while waiting to see her. It sounds like there were no surprises by what was found and they got a lot of good information and we got an idea for what Margaret's medical future will look like. Intimidated? Yep, we are! But we have yet again been blown away by how well we are taken care of here at Children's. 

Next week, the whole team will go over Margaret's case and discuss timeline for open heart surgery. (If you saw me leading up to today, imagine the mess I'll be leading up to OHS!😳🙈). Bill and I agree that we are full of mixed emotions. We are nervous but looking forward to getting this initial OHS done. It will be a complicated surgery but we have a pretty fabulous surgeon and cardiology team taking care of our precious girl. 

Please keep our little lady in your thoughts and prayers. We are all gearing up for a busy next couple of months. Can you believe how strong these heart warrior babies are?! Amazing. All of them!