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!

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:

Surgery #2

Alright. All roads lead home...eventually, right?!

Our mighty little Margaret was taken back for surgery right away this morning and is now settled back into her giant bed and room beginning recovery. Surgery went extremely well (and pretty quick!) and our girl is now sporting a pretty fancy and expensive piece of medical equipment that will keep her heart in check and we shouldn't have any further arrhythmia episodes. 🙏🏻 Momma can't take another surgery or scare and we have all (even the surgeon) had conversations with miss Margaret that her job now is to work on recovery and start towards the goal of going home. We will still be in the hospital for a while but at least now we don't have to worry about arrhythmia! Being here gives us time to learn about Margaret's pacemaker and how to take care of it and all that having one entails for our little one. 

We are dying to hold our precious girl again and hopefully will be able to do that soon. 

The plan for today? Rest, wake up, get extubated, and manage her pain. 

Thank you to everyone who has been checking in on us, praying, sending positive vibes, etc. We all feel very loved and cannot even begin to express how thankful we are for all of you! 

One hurdle down...only God knows how many more before we take our princess home. Praying for patience and progress FORWARD. 

Backwards

Backwards. That's how it feels we are moving. Margaret has had a few more arrhythmia episodes over the last few days. 2 were not a concern according to the doctors as they were very brief and something about the rhythm being ok, but one was similar to the one she had last weekend and she needed to have medical intervention to come out of it. Terrifying. Seeing your 2 week old intubated and so many doctors and nurses rushing around her in the room. Again. 

We were moved back to the intensive care area of the unit - backwards, literally down the hall and we have one of the rooms closest to the OR now. ☹️

The plan for now is for Margaret to have surgery on Monday and have a permanent pacemaker placed. 

Margaret's medical team all continue to be so amazing and we can really tell that they all love this little peanut and are trying so hard to figure out why she's having these episodes while putting her safety and well-being as the #1 priority. It's frustrating for them to see her like this, too. They want answers as bad as we do. 

She's proving time and time again that she's the one in charge and as badly as we want to bring her home, we need her to be healthy and safe before we do that. 

Keep praying for our little miracle. 

Status Change

Wow. Tomorrow my baby girl will be 2 weeks old! I cannot believe it! This little lady has been through so much and is such a trooper. 

We moved down the hall to a new room and bumped out of "intensive care" to "intermediate care"!!!' (This is huge!! 🎉 Mom might have cried...)

The last few days have been exhausting and overwhelming for all of us. Margaret is recovering well from heart surgery and now we are working on getting her to eat...which is hard for Mom because she was such a good eater before surgery and seeing her struggle is hard. Margaret is struggling with eating because she can't quite balance breathing with swallowing milk. She has to work harder to get the same amount of oxygen as other babies. Slowly she is making progress, though. 

Today was a big day for us because Margaret got her nasal cannula taken off and hopefully it will stay off! Margaret had a NG feeding tube placed so we can make sure her tummy is getting full. It's a lot easier to work on eating by mouth if she doesn't feel super hungry. She continues to get nutrients and fats through her central line. 

It's amazing to me that this little peanut had heart surgery and has only been getting Tylenol for pain the last few days. She sure is tougher than I am!! I would be asking for much stronger meds! 😜

Keep praying, friends! We continue to be grateful and amazed by the kindness and generosity of everyone. 

Surgery #1

Praise God! Margaret was taken back for surgery at 8:30 this morning and the actual procedure started at 9:33. We were told to expect everything to be about 4 hours. The surgeon came by a few minutes ago to let us know that everything went great. Margaret's pulmonary arteries looked better than he anticipated and the procedure went smoothly. He is optimistic about the arteries growing stronger together and it looks like the next thing would be to monitor their growth and blood flow, especially the right side.
We are anxiously waiting to get the "go ahead" to go back to her room and see her. Thank you all so much for the love and continued prayers for our sweet little Margaret. She is officially 1 week old today! She is a little fighter and we couldn't be more proud of her! 😍❤️💕❤️💕

We are so grateful for the Children's hospital and how well we are all being taken care of including the Ronald McDonald house. What a blessing to live here and have access to such amazing doctors, surgeons, nurses, specialists, etc.

Movin' on up!

Moving on up...to a room with a view! Margaret is scheduled to have her first heart surgery Thursday morning. Margaret is a tough cookie and she is our little hero. Please keep her (and us!) in your thoughts and prayers as well as her team of nurses, doctors and surgeon. 
It's going to be a long few days and even longer recovery period but we have faith and will get through it all together as a family.