Gratitude and the road to repair

November is typically a month of gratitude.  The last two Novembers, we've had a lot to be thankful for, but this year, I'm feeling double the gratitude.  We are surrounded by people who love us and our girls.  While our road has not been easy, we have been beyond blessed and I will never take any of what we have been given for granted.

I would be remiss if I didn't first express my gratitude for our village.  Gratitude for our parents, they have been a great support.  My parents, who are not here because I'd rather us all spend time together when everyone is well, are ready to leave with bags packed if we need them.  Chris' parents took Hope and Sanders for the first 4 days of Mireya's hospital admission, and it was like a vacation for our two older children.   Gratitude for our friends, some old, some very new, I can't even begin to find the words to say how grateful I am to have such a village.  From the texts / emails, to the continuous offers to help, from the gift cards sent over email, to the food brought to us at home and at the hospital, to the love and support shown through Facebook and Instagram.  All of it...I can't begin to say thank you.  With a two year old at home, we have needed a whole lot more support from this village than we did when Hope was inpatient.  The response has been overwhelming.

A few weeks ago, a friend from my running club set up a meal train for us.  This allows people to sign up online to bring us a meal.  We've already had several meals delivered and they have been amazing.  Its so nice to know that there is a home cooked meal waiting for you at home that you simply have to heat up when you've been at the hospital since first thing in the morning and you're mentally cooked.  Its also nice to not have a bunch of pots and pans to clean.  Looking at the long range, we have many more meals coming, which should help even when we're out of the hospital. There will be lots of follow-up visits, and it will be nice to have these meals after trucking two kids into the city for follow-ups.  We also just invested in a deep freezer, due to being blessed with an overabundance of milk, so I have been freezing the extras from meals so that we can dig them out when we need them.  I have been so touched by how many people have signed up to bring us food.  Perhaps what I was most touched by was when a fellow new mom from the baby group I go to with Mireya reached out to me and told me a group of them wanted to bring meals and asked to be included in the meal train.  I only met these women 10 weeks ago, so this was so incredibly moving.  Another mom, that I met in this same baby group, but with Hope, dropped off a potted plant with a beautiful note and gift card to Whole Foods.  Again, we can't begin to thank people for the support we've received.        

Hope and Sawyer

In addition to the meals, many people asked how they could help.  I don't usually like to ask for help, but like I said, in addition to the dog, we now have a two year old at home who needs attention too.  So I set up a spreadsheet with her schedule and invited those who had expressed interest to sign up for 3 hour time slots.  Again, the response was overwhelming.  This has been great because it allows Chris and I to be at the hospital together, which is good because two sets of ears are better than one.  We have someone lined up to come play with Hope every day up until Thanksgiving, and then every day starting the Saturday after Thanksgiving.  We are hoping to be home and to not need the people who signed up after Thanksgiving.  So far, it has worked well and Hope has had so much fun with the people who came to play with her.

Hope and Grace

Hope and Grace

Last night we brought Hope in to the hospital for the first time.  She seemed incredibly happy to have our whole family together.  We ate dinner huddled in our tiny little room and took Hope on a tour of the floor, telling her about her stay here. I'm sure we'll get her in here a few more times.

Mireya has done incredibly well.  Everything has gone according to plan.  She came through surgery with flying colors.  Surgery took about 4 and a half hours and they were able to accomplish everything (and more!) that they wanted to accomplish.  The original plan was just to place the conduit from the right ventricle to the pulmonary arteries (RV to PA conduit).  After looking at the pictures from the catheterization, the surgeon felt good that he could go ahead with the unifocalization, which basically meant plugging in the collateral arteries into the pulmonary arteries and getting rid of the ones that didn't matter.  Both of these steps will help correct the flow in her heart and help widen her very small pulmonaries.  She will then undergo a series of caths and eventually another surgery to close the VSD.  We don't have a number on how many caths and we don't know when the VSD closure will be.  If it is far enough out, we may also be able to have them give her a larger conduit to stretch her out before her conduit replacement.  The fact that he was able to go through with the unifocalization eliminates one of the surgeries planned for the future, meaning that instead of three reconstructive surgeries, she will only need two, so you can imagine how pleased we were to hear that he was successful in the unifocalization.

Pictures taken right before going down for surgery

Wednesday was a long day.  We got to the hospital around 7:30, waited for about an hour for them to take her down, then waited around most of the day.  After they took her back, Chris and I did the same as we did with Hope and headed into the city to keep our minds occupied.  It was a pleasant-enough day though I wouldn't say it was beautiful.  Kind of overcast and damp, but not cold.   We went and said a prayer and Trinity Church in Copley Square, then walked down Boylston and around the Public Garden and back up Newbury.  We had lunch and a glass of wine at Stephanie's because that was what we did when Hope was in surgery.  Then we headed back over to the hospital where we waited for a few more hours.  We probably could have gone home, but I couldn't really see what we'd do at home, and it would have meant battling traffic more than once.   We finally got back to see her around 5.  We were shocked at how good she looked, but then again, our only experience was with how bad Hope looked.  The next few days in CICU were busy and she did better than we expected. On Thursday, they lifted the sedation to allow her to start to wake up.  On Friday, they removed the breathing tube and the arterial line.  Yesterday, they removed the IJ line (the internal-jugular line) in her neck.  She was sailing along and we were feeling pretty good about going home sooner rather than later.

Post-op

All of her pumps fresh out of surgery

Resting comfortably

Last picture in the CICU - look how few tubes and wires!

Little Diva 

Snuggling with Mama

First bottle with her daddy

Yesterday afternoon, we were transferred out of the CICU and onto "the floor", the step-down unit.  The floor means you are no longer critical and you are working towards going home.  The nurses here tend to have a bigger case load, with 2-3 patients each instead of the one-to-one care in the CICU.  Parents are responsible for a lot more over here.  We are encouraged to resume most of her care, from diaper changing to feeding, etc. and are much more responsible for decisions regarding her day-to-day, non-medical care.  The transfer went fine and we are back in Hope's first room.

But any hospital stay is a rollercoaster and for the first time, I'm feeling a little down today.  It is clear that my little baby is in a lot of pain, likely from the chest tube.  She is usually such an easy-going, content little thing, especially if she is being held.  Since I got here last night, she has been moaning a lot and doesn't really want to be touched / held.  It is heartbreaking.  We didn't experience this level of pain with Hope because by the time she was actually with it enough to feel pain, all the chest tubes were out and much of the pain had subsided.  The nurses say day 4 is the worst.  They also tell me she will feel a lot better once the chest tube is out, and that is scheduled to come out momentarily.  She had a chest x-ray this morning, which looked good, and they were watching the drainage in the tube.  As long as there was not excess drainage, which there wasn't, they will take out the tube.  For now, we're keeping her hopped up on morphine and tylenol.  In keeping with her high-maintenance, Diva status, she required two nurses to help settle her.  One of which, not even her own nurse, spent most of the morning / afternoon on this task.

Another thing that has me a little down is that since her cath, they have had trouble finding a pulse in her left leg, the leg the cath was performed through.  This means that there is either a clot or there is a vaso-spasm from the cath.  She has been kept on a heparin drip to thin her blood to try and restore ciculation.  The good news is that it seems to be coming back.  Both the night nurse last night and the NP this morning were able to feel a pulse, but it is very faint.  Based on the ultrasounds they did last night, they believe it to be vaso-spasm and not a clot, which is good news.  So the plan is to stay on the heparin and start aspirin until we get some levels tomorrow and then, if her levels of both the aspirin and the heparin are good and we can feel a pulse,  we will then turn of the heparin and move onto something like lovenox, which we could go home on and doesn't require an IV.      

While she is not eating her normal amount, she is feeding reasonably well, especially given the pain she is in.  Her weight is down, but that's to be expected given the fact that they filled her with fluids pre-op then diuresed the fluids post-op, not to mention, she didn't eat for a few days.

I stayed here last night and she had a good night and slept well, but was awake at 6, moaning.  I thought she might be hungry so I fed her, but feeding her did not relax her like it usually does.  She continued to moan.  Its not all out crying, just continuous moaning.  It gets worse if you touch her.  I slept ok, despite sleeping on a pull-out chair in a super cramped room. My saving grace was that our roommate's mom did not stay over night, so even though I was cramped, at least I had the room to myself and could use the bathroom / shower etc without feeling like I was intruding on their space.
 

The Dawn Redwood

As I have in the past, I find great refuge in the Prouty Garden.  I went there today when the nurse gently told me to go take a walk and get some fresh air.  I took these pictures, potentially the last pictures I will take there as its doors are about to be closed forever.  While it is sad to dishonor all of the memories created in the garden, the new building will include more space for the cardiac program.  It will allow for more patients to have their much needed surgeries and will provide more beds in hopefully, more comfortable spaces.  I have tried to take comfort in this and think that the hospital is trying to have their patients' best interest at heart.  

The fountain

The roots of the Dawn Redwood

So overall, things are going well.  I'm still hoping we'll be home sooner rather than later, but I'm not quite as optimistic as I was yesterday.  Maybe it will be better when the chest tube is removed.  While I've managed to maintain a positive attitude until this morning, there is nothing easy about having your child in the hospital.  I look forward to getting home and us all being a family again.  I look forward to Mireya feeling better and returning to her sweet, happy, demanding self.