Christmas magic and good news

Our girls in front of the Christmas tree

When Mireya was born, none of us thought that we'd end up being in the hospital so close to Christmas....but here we are.  While it caused me to have a serious meltdown Tuesday into Wednesday, it actually wasn't been as bad as I thought it would be.  The worst part was not all being together under one roof.  This is the first year that Hope truly has awareness of what Christmas is and before all this happened, I was really looking forward to watching her experience the magic of the season.  When we were released on December 13th, I was happy to have two weeks to make up for lost time.  Unfortunately, Mireya had one more surprise for us.

Christmas decorations in our room

The hospital really does their best to bring the holiday spirit in.  While it is far from a magical place, there is a certain element of festivity and cheer here that is not present other times of year.  The nurses are all decked out in holiday attire, there is lots of food going around, and new little surprises appear each day.  On Wednesday, in the midst of my meltdown, I snuck out to stick some Christmas cards in the mailbox and grab some lunch.  When I came back, I caught two of our nurses, Christine and Jess, in my room decorating it for the holidays.  They knew how bad a day I was having and wanted to cheer me up.  They put on Christmas music, put up a tree, and left two little Madeline books with dolls to match.  I found out later that the dolls and books had been donated by The Heart Warrior Foundation, which was founded by two heart families, and I am friends with one of the moms :)  This makes these dolls extra special.   Thanks to the kindness and generosity of strangers, Santa is going to be a little extra generous to Hope, who has been such a good girl this year.  While I was waiting for the nurses to finish decorating, one of the child life specialists stopped by and invited me to go down to their Christmas "shopping" room.  People donate truckloads of toys to the hospital this time of year, thousands, apparently.  The hospital puts them in a room and invites each family to come down and go shopping, not only for the patient, but for all of their siblings too.  I cried when she gave me the invitation.  There were multiple times to go down and shop, but I needed the mood lift, so I went down that afternoon, thinking I'd pick out a toy or two.  When I got down there, I was given 14 tickets!  There were shelves and shelves of toys, which were regenerating every time a space emptied out.  I filled up two trash bags with some really fun things for the girls.  When I was done picking out my toys, the next step was the wrapping room.  They had tons of wrapping paper, ribbons and bows and volunteers on hand to help wrap.  There was Christmas music playing and joy being spread.  Parents, who had walked in looking as tired and weary as I am sure I looked,  looked rejuvenated and happy as they walked out with their trash bags of toys.  Over the next few days, I noticed the inconspicuous trash bags everywhere and it made me happy.  It truly was the spirit of Christmas and I won't soon forget it or how it made me feel.  We do not need the toys, as I had managed to get some gifts for the girls, but I did need the boost.  Like I said, Hope has been so good through all this and truly deserves to be spoiled this Christmas  Up on the 8th floor, the buckets of goodies, left around the unit for families to take, seemed to replenish themselves with goodies hourly.  Most of these items are donated by other heart families, which is even more meaningful.  I'm already trying to think how I can give back when my girls are well, in a way that will be meaningful for them too.  I kept these trash bags in our room for the rest of the week.  I did not want to take them home and have them jinx Christmas.  Plus, every time I looked at them, I got another boost of Christmas spirit.  When I got here today, I finally felt safe to take them out to the car.  We're going home and we will be home for Christmas day!  And this time it is going to stick, I know it.

Some of the surprises Reya received

Checking out the tree in the lobby

Playing with the carseat at Dr Mahony's

While none of us wanted to be readmitted, it has been a productive stay.  You see, Miss Mireya is a pretty good faker.  When we were discharged last week, we were sure she was eating.  She had everybody fooled.  The day before we were discharged, both lactation and the feeding team watched her nurse and were convinced she was eating well.  She would not take a bottle, but I felt confident she was getting enough from me.  The only one who was skeptical was her cardiologist.  The first couple days at home were stressful.  as I was traumatized by our first trip home.  I was terrified she was not eating enough and was going to get dehydrated again.  We even skipped a dose of lasix one night because I was so terrified of giving it to her.  In addition to not taking a bottle, she had a few symptoms that were concerning to me, symptoms we had chalked up to the clonidine wean but being that they were lingering as the clonidine wore off, they made me a little nervous.  Whenever she ate, she started to cough up some clear mucousy stuff.  Sometimes, once or twice a day, she would vomit with this coughing.  Her voice was hoarse and week, which made me feel like she was sick and something was terribly wrong.  The day after we got home, the visiting nurse came.  Her weight was down a negligible amount.  Two days later, Friday, we went to the pediatrician.  Her weight was up and Dr Mahony and I talked through all the anxiety I was having.  She heard a little crackling in her lungs, so she checked in with our cardiologist, who wasn't concerned.  The weak voice didn't seem to concern her.  This appointment made me feel so much better and I finally started to exhale, which I felt like I hadn't done in a month.

Finally relaxing at home

Princess is happy to be back in the hospital, it seems

The next day the visiting nurse came again and her weight was up from their previous visit.  Everyone was happy and we started to continue on with life and my confidence started to return as well.  Tuesday, we had a regularly scheduled follow-up with Dr Friedman, our cardiologist.  I was convinced she would show some big gains and we would be praised with how great she was doing.  So I trucked both girls into the hospital and was looking forward to getting through the appointment and going home for a nice relaxing night.  As soon as I saw the numbers on the scale, I knew we were in trouble.  But nothing could have prepared me for what he was going to say.  He even told me - "you're not going to like what I'm going to say."  He said we needed to be readmitted.  She was too skinny and it was getting to the point that it might get dangerous for her health.  She needed an NG tube.  This was not the news I wanted to hear and I was completely blindsided and devastated by it, even though it was not as serious a reason for readmission as it could have been.  I cried on and off for the next 24 hours, and felt like I had failed her as a mom.  This readmit was far more personal than the first one, even though it was far less serious.  I just wanted her to be able to eat like a normal baby.  

Sleeping peacefully

But it has been a productive stay, even if it felt at times we were sitting here watching the grass grow.  We were told upon admission that as long as she gained weight, we'd go home by the end of the week.  There have been no needle sticks, which made this visit far more pleasant for Mireya.  The worst that happened to her was a chest x-ray and routine temperature checks.  She is back to smiling and making friends with all the nurses.  And we finally got the answers we needed, even if they were disappointing.  On Thursday, Victoria from lactation came by and helped us do a pre and post weight.  While Mireya looked comfortable on the breast, and appeared to be eating, we realized she was not extracting any milk.  This news was so disappointing to me.  By the end of the feed, she had taken only 10mLs.  She had probably decreased the amount she was taking gradually.  When I started pumping again on Wednesday, I learned that my supply had taken a big hit, which meant it had been going on long enough to affect my supply.  I never felt engorged because she probably took less and less each feed, and since breastfeeding is supply and demand, my body just thought she needed less milk, so it made less.  On the bottle side, after a couple days of trying to get her to take it, and only getting about an ounce in at a time, we were scheduled for a barium swallow.  This was meant to see if she was aspirating milk into her lungs.  If she was, the treatment was to stick an NG tube in, which we had already done.  The test was meant more to see if we could get an explanation for why she wouldn't eat.  Unfortunately, she refused the barium swallow.  The feeding team recommended that we get the ENT team up to do a scope,  We did get an answer to the breastfeeding problem from this study though.  She was sticking her tongue up against the roof of her mouth to prevent milk from going down her throat. We suspect this was a protective measure on her part because something obviously hurt.  Who knows how long she had been doing this, though like I said, it was probably a gradual development.    Our night nurse on Thurs night felt strongly that she was indeed aspirating.  Yesterday everything seemed to come together.  She had a big weight gain on Thursday morning, which made the team happy and they told us that as long as she gained or stayed the same Friday, we'd go home.  She had a slight gain.  The feeding team came by again to try thickened formula feeds (formula with cereal in it) which is harder to aspirate.  Despite our attempt with several nipples, she refused.  This refusal helped us develop a plan - to give her a rest and feed her entirely through the tube.  By not forcing her to eat, we could help her avoid developing an aversion to the bottle.  At the end of the conversation, lactation dropped in.  She suggested that we continue to let her nurse, knowing that she gets almost nothing.  She recommended I pump first so that anything she does get is the fattier hindmilk.  This will help her keep up her nursing skills and muscle tone, so that when she is ready to eat again, it won't be new.  She also recommended that I nurse her while the food is going through the tube so she will still get the sensation of getting full while nursing.  Even though this is not the feeding plan I wanted for her, I feel good about it.  The last piece of the puzzle finally came together yesterday afternoon when the ENT team stopped by.  They did a scope, which literally took 20 seconds and it was determined that she has a paralyzed left vocal cord, something that happens often to babies during open heart surgery.  An answer at last, and one that I was not surprised by at all, as I had gathered enough information to suspect this diagnosis.  The treatment is to let it heal on its own and that can take weeks to months.  While you never want to get another diagnosis, it always helps to have answers.  Now we know why she wasn't eating and it wasn't as personal as I originally thought.

We were, in fact, cleared to go home on Friday, Christmas Eve Eve, but Hope came down with the stomach bug Thursday night, so we asked them to keep her one more night, which given her track record of being readmitted, they were more than happy to oblige.  So that left us with a Christmas Eve discharge.

A perfect tape job on the tube, for future reference

Resting peacefully on our last morning

As I wrote this, I was waiting for my discharge papers.  As usual, we were told late morning, and it was almost 2:30PM when I finally got this.  I was prepared for it to take all day, so I wasn't exactly surprised.  What really matters is that tonight, I will sleep in my own bed with both of my girls at home under the same roof, as we all wait for Santa to visit.  We have all been very good and I expect this to be the best Christmas despite the fact that I was convinced Christmas was ruined on Wednesday morning.  I owe this all to the kindness of strangers, the staff here at Boston Children's Hospital, and the magic of Christmas.  My heart goes out to all those who are still inpatient, a well as the nurses, doctors, and support staff working on Christmas day.

Going home, at last!!

A few photos from the week we were home:

Relaxing with Dada

Hope got into my running gear

Mama's girls

Working on using her hands (3.5 months)

Working on the computer

Teaching Hope about the magic of Christmas:

Holiday lights run

         

Handing out presents at the nursing home

Its a marathon, not a sprint

3 days post-op

It has been an interesting few days since I last posted.  I finally feel a peace I was unable to feel after the first surgery.  There was something telling me things weren't right.  The baby we brought home was not the same baby that we brought to the hospital.  I found myself wishing we were back at the hospital.  When we got here, I still felt like something wasn't right.  She was extremely fussy even as we started to get the reflux under control.

A rare moment of rest in between surgeries

Pardon my language, but the shit hit the fan Tuesday afternoon.  I took a break to pick Hope up from a playdate and spend the afternoon with her before we went back in for dinner.  In the hour that I put my phone aside to play with my toddler, I received two calls and a text from our cardiologist.  My phone was on silent left over from the echocardiogram Mireya had had that morning at the hospital, so I had no way of knowing he was trying to reach me.  When he couldn't reach me, he called Chris.  For this I am glad.  Any time the hospital calls you, it is not good news and this was no exception.  The results from the echo were bad.  On Saturday, when we came in, they had done an echo and noticed an anomaly on her conduit.  Our cardiologist had noted it before we were discharged, but wasn't significant enough at that time to do anything but make note of it.     By Saturday it was noticeable enough to see there was a small aneurysm.  Tuesday's echo was to recheck this aneurysm.  It had doubled in size and was growing rapidly.  The only way to fix it was surgery and it needed to be done sooner rather than later.  They had never seen one burst, but the way this one was growing was somewhat alarming.  Our surgeon was open the next day, so they decided to go ahead and fix it immediately.    I will admit I have never been more scared than I was after we got the news that she would need a second surgery.  While I have been well aware of the risks that come with open-heart surgery, I am also aware of the success rates that they boast here at Boston Children's.  I've always felt confident that the girls would pull through and not become a statistic.  But this time felt more urgent and more scary and I actually had to think about what it might feel like if we did lose her.  It was really an awful feeling and I can't possibly imagine what it must feel like to lose a child.

Morning of surgery

Tuesday night, I stayed the night with Mireya and she did not have an easy night.  She was incredibly needy and would not allow me to put her down.  They came for us first thing to take her down to the cath lab.  Our surgeon wanted to have an accurate road map before going in for surgery.  While she was in the cath lab, I ran home to see Hope and take a shower.  Running home from the hospital is something I do frequently.  It allows me to stay overnight and only take one car in.  It also gives me time to clear my head.  It saves time because it only takes me about an extra half hour to run home.  I really needed the run on Wednesday.  Aside from being tired, I felt really tense from the news we had gotten the day before.  Running frees my mind and lifts the tension.
 

After I got home, we left Hope with Chris' brother and his girlfriend and headed back in to the hospital to spend some time with Mireya before they took her down to surgery.  They left her sedated and intubated in between the cath and surgery.  This was good so they didn't have to bring her in and out of anesthesia twice.  We hung around and waited for surgery to come by with consents and then went down with her to surgery.  Taking your child down to surgery and handing her off never gets easier, though this time I didn't actually cry.  At this point it was 3:00 and we decided, given the fact that it was pouring, to try and beat the traffic and head home and wait for news there.  Per tradition, especially given Hope was out on a field trip with her uncle, we went out for drinks, first to Not Your Average Joes then to one of our favorite restaurants, Tango.  Not Your Average Joe's had $1 oysters so I had half a dozen and a pomegranate martini.  Tango has a cozy bar with empenadas for Chris and a drink called the Buenos Aires martini, that I love.  We had a gift card that our friends had sent us and it seemed like the perfect occasion to use it.  As we drank the afternoon away, the updates came in.  The surgery was moving along swiftly.  We went home to catch up with Hope, Robbie and Tiana.  Finally we got the call that it was over.  Chris headed in to the hospital to meet with the surgeon.

In between the surgery and the cath and not looking so great

The surgery was a success.  A new 9mm femoral conduit made of goretex supported by an external stent had been placed, replacing the homograft conduit that had failed due to the high pressures in Mireya's heart.  These high pressures are a result of her MAPCAs.  There is a normal flow of blood coming in from the aorta on the left side of the heart.  It goes through the VSD (the hole in her heart) and out through her narrow pulmonary arteries, building the pressure in her heart.  They leave the VSD open so that the blood can shunt back over to the other side of the heart, rather than causing the pressure to go too high.

First photos post-op

Day 1 post-op, 3 months old

Now on to recovery.  We are back to where we were two weeks ago, just one room over.  We are in the room Hope spent 12 days in post-op.  Her first day of recovery went great.  She looked really good and they were ready to extubate.  It was clear that the tube was making her angry.  We waited around for them to pull the tube and they came close at one point, but then she fell back asleep.  They needed her awake.  We finally gave up because we wanted to grab dinner before going home to put Hope to bed.  We found out that they extubated her just a few minutes after we left.

Having a rough day

Yesterday was not as good as Thursday.  Mireya is a little bit of a princess and felt the need to cause a ruckus both when they extubated her and then the next morning during a routine chest xray.  She is a very calm, sweet baby when things are going her way, but when you piss her off, there is hell to pay.  She does not care for chest xrays or diaper changes, especially if wipes are involved.  She gets angry and when she gets angry, it is quite dramatic.  She begins to shunt blood through the VSD.  This is a problem because then the unoxygenated blood goes back across the VSD and out to the body causing her to desat and go cyanotic on us.  She tends to recover well, but it can be quite scary  She did that a couple times overnight from Thursday Friday and almost resulted in her being reintubated.  Fortunately, the attending on duty was the same attending that was on duty when she was extubated and he had seen this dramatic reaction and more importantly, the recovery.  So after that dramatic performance, yesterday was a rest day where not many changes were made other than to slowly wean her oxygen.  When we got there yesterday she was on 8L of high flow nasal cannula at 100%.  When we left, she was at 6L at 70%.  When I called to check in before bed, she was at 6L at 40%.  So while it was slow, there was definitely progress.

Heartbreakingly sad eyes

Peaceful

Today is a new day.  She was resting comfortably in her throne when we got here.  I noticed the high flow oxygen machine was turned off.  I was about to go check to see where her oxygen was, when I noticed there was no longer a cannula in her nose - off oxygen and on room air!  This is a big step towards the floor and then home.  The plan for today was to get her to start eating, take out the chest tubes and intercardiac line (which will mean we can hold her again) and start weaning some of the painkillers.  So far we pulled the line and the tube, and she is settling into Chris' arms to eat.  They are talking about moving us to a more private room with walls.  It looks like we will probably be in the CICU until Monday.   Then depending upon how things go, I'd suspect we'll go home mid-late week.

The essence of Hope

Love this kid

Picking out a tree

So all in all today was a good day.  We are heading in the right direction.  We thank you for all your thoughts and prayers, food, and offers to help.  Currently, my parents are here to entertain Hope and help out.  We have used some of this down time to spend time with Hope.  We got a Christmas tree last night and my mom is going to get the lights on it today and start decorating it, so that we have some semblance of the holidays in our house.  While I really didn't feel very Christmas-y at all, I am feeling better as the decorations go up and Mireya starts to make big progress.  It will be nice to have all those decorations up when we do finally get home.  It's been hard not to get discouraged and feel down the last few days, but its also so important to remember that it is a marathon and not a sprint.            

First time holding her post-op 2