Breathing easier

Brace yourselves, this is going to be a long one but I promise to include pictures to make it more fun. 😉

It's been a week, y'all!!!  

Tuesday/Wednesday this is how she looked...

Margaret had a rough couple of days this week as the IV meds were being weaned off.  At one point she hadn't slept more than a few 10-15 minute restless naps in a 24 time period.  It was awful.  Clearly the snails-paced weaning was not working and we had to switch to more of a glacial pace.  We also ended up adding a new oral medication as the IV med was decreased to help with lessening the discomfort that and it seems to be working well.  Yesterday and today have been so much better and Margaret looks and feels a lot more like herself.  She's still pretty unpredictable and we can tell that she's experiencing some discomfort but not nearly at the same level as she had been.  

loving the swing

On Wednesday the NP and Cardiologist let Margaret try hanging out without the oxygen support.  She was able to keep her sats within an acceptable range AND she made it through the night without needing it!  We were pretty pumped to see her sweet face without the nasal cannula.  Next up was the line in her foot.  Margaret hated having that one in and it randomly started not working so it was able to come out sooner than expected.  The only line left was the neck line and that one came out today!!!  🎉

Thursday Margaret was feeling much more peppy and we even got to get her dressed in her jammies.  She insisted on having a bow, too.  Such a girly girl.  😜  We were able to get her into a swing and a high chair and get some actual playing in as well.  Margaret was excited about the change in routine - things can get pretty boring around here...I even was able to get a little giggle out of her while playing in the high chair.  SO fun to start hearing her make noises and facial expressions that she had been making prior to surgery. 

dressed, playing & watching Moana

Today, Friday, was a good day.  Margaret is still a little more irritable than normal but that's to be expected when weaning off of the type of meds she's been on.  We stopped the continuous feeds and have started working on getting her back into her bolus feeds.  She's done okay so far and unfortunately still refluxing pretty bad.  We can handle reflux.  Often we are asked what her baseline is and it's refreshing to be able to say "yep, this is what she was doing before surgery" and then it doesn't become a concern for the team.  We just need her to be at baseline in order to bring her home.  

The age Margaret is at can be hard.  Why?  2 words: stranger danger.  Margaret is typically extremely social and LOVES people -- seriously, I have videos of her trying to reach out to and play with strangers at the grocery stores.  She LOVES people.  It's been a bummer seeing her go through stranger danger here, though, but it's totally understandable.  This place can be scary when you're too young to understand why you hurt and that the nurses and doctors are actually helping you.  When someone takes a bandage off your tummy and it doesn't feel good, wouldn't you scream when you saw them, too?  As a result, Margaret has become even more of a mommy's girl and the poor nurses struggle with keeping her calm when I'm not here.  Thankfully we shouldn't be here too much longer and we are hoping Margaret becomes a social little butterfly again soon.  

more playing

We also discovered that Margaret seems to be teething more and we think her bottom two teeth will pop through soon.  Go figure, her body chose now, right after open heart surgery, to put her through teething!!  

Overall she's had an extremely busy but productive week.  We are very optimistic that we will be able to go home soon.  

helping update the blog

mommy's girl

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!

Bumps are normal...

the look of pure exhaustion

If there's one thing we all know about Margaret, it's that she likes to be the boss.  Recovering after major open heart surgery is no simple task and there are bound to be bumps along the way.  

This weekend we encountered one such "bump" and Margaret let us all know that we were being a bit too ambitious with weaning her meds.  Sunday, in particular, was a bit rough.  Margaret struggled with the decreased amount of meds and ended up needing bumps to help relieve discomfort and frustration.  It was hard to see her so uncomfortable and needing more support - seriously, SO hard.  Getting and keeping her comfortable is a priority and yesterday afternoon/early evening we were able to achieve that, thankfully.  Not being able to scoop her up and snuggle her nice and close is one of the most difficult things either of us has ever experienced.  Especially when she flashes that professional-level pouty face that she's quickly becoming known for!

Today, she's been pretty calm.  She actually has been asleep for most of the day - her body is telling us it needs some serious rest!  The plan is to go super slow with weaning her meds and pay attention to what she is telling us each day.  That's ok.  We can deal with slow.  Slow and steady wins the race...🐢

This morning Margaret had an echo and, surprisingly, she slept right through it.  I watched in awe as the ultrasound tech was able to move the wand all over her chest and get the images that they needed all while Margaret kept snoozin'.  This is definitely not typical behavior of her so I kept waiting for her to suddenly open her eyes and start screaming, but it didn't happen!  I was even able to run downstairs and grab a quick bowl of cereal while the tech finished up.  The results of the echo haven't really been explained to us quiet yet.  The echo basically looked just like the one they did right after her surgery.  This isn't necessarily great, but it's better than things looking worse!  One of the cardiologists looked over the images and gave me a little bit of an idea but we will wait until the surgeon is able to examine them and decide what's next.  It's going to take time for Margaret's heart to adjust to the changes that were made to it -- really it could take even months for her body to fully adjust.  That's ok, too...we've got time...😊

we love getting rid of machines!

Margaret has to wear mittens because she keeps trying to pull her nasal cannula out when she rubs her eyes.  She doesn't like wearing them but at least she tolerates them ok.  That pouty face of hers really can tug at your heartstrings and make you feel exponentially guilty, though, that's for sure!  

Recovery update

Margaret has kept us all alert and aware of her every move (literally) over the last 24 hours.  For the most part, she's been relaxing and allowing her body to rest up and heal but that spunky and determined personality of hers has definitely been shining.  She has had a few episodes where she gets really upset/uncomfortable/frustrated and turns blue so that's a bit scary.  Thankfully, yet again, because of the grace of the amazing nurses and doctors, she's been fine and continues to be safe.  

precious little face napping

We knew taking her breathing tube out was a possibility for today but knowing that Margaret likes to make her own decisions we weren't totally sure it would happen.  Well, this afternoon she finally was stable and awake enough to allow the team to extubate her!  She is still on some nitric oxide and a high-flow cannula but it's so nice to see her sweet little mouth without the breathing tube.  Who knows how much she's actually getting since she totally is a mouth breather and I'm pretty sure the flow goes in her nose and straight out her mouth. ha!

always needing to have a hand to hold

Taking the tube out has been an adjustment for her but now that it's been a while she seems to be feeling much better.  There has been lots of uncomfortable cries, which are muffled by her hoarse voice unfortunately.  However, she's allowing herself to give into the sleepy dust and taking some good naps.  A little while ago she woke up and we were able to play with her and read one of her favorite books (thx Great Aunt Maralee! 😉).  For just a few minutes she was distracted by us and really seemed the most "with it" as she has since before surgery.  We are both excited to see how she is feeling in another day's time that's for sure!  

Oh - chest tubes came out today, too!  The next few days should be exciting as we will hopefully start to see more of our spunky little lady's personality shine.  We've warned the nurses... 😜  

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!!