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

Never a dull moment

So yesterday was quite the day.  It started as a somewhat normal Saturday.  We had finally all had a relatively decent nights' sleep all under the same roof.  We were working on getting in the rhythm of all being home together.  Chris went to Krav Maga while I went through the morning routine of getting the girls going.  There were a bunch of additional tasks related to Mireya's health.  I had to draw up her meds and make / answer a few phone calls.  I was feeling like our homecoming had not been going great, so I was trying to manage that.  The cardiologist on call that we had talked to Friday night at Children's had requested we be seen by the pediatrician Saturday morning, so I had made an appointment.  I spent the morning getting ready - breakfast for all of us, putting Sanders out, meds for Mireya, getting both girls changed and dressed, and getting myself presentable enough to get out the door.  By a minor miracle, we made it in time for our 10:15 appointment, but not without a lot of chaos in getting out the door.  The house was a mess and I had to drink my coffee on the go. There were several things I had left undone, thinking we'd be back in an hour to get going on every thing that had been left undone during our hospital stay.  This is where I went wrong....

Feeling good

We were so excited to come home the day before Thanksgiving.  On Monday of last week, it looked pretty good that we'd be home in time for the holiday.  It had been a pretty packed hospital admission with very little of the down time we had experienced with Hope.  I had expected to have some time to get some things done on the computer, but our days were filled with tests, specialists, and discussions related to her procedures and then discharge.  Things went as smooth as they possibly could.  By Monday afternoon, there were a few tests left we needed to have done and she needed to show she could eat.  It felt like Mireya was ready to get out of there as well.  Monday night, she screamed every time we tried to get her settled in her room.  The nurses had to take her for half the night and neither of us got any sleep.  By Tuesday, everything was checked off and we were cleared to discharge on Wednesday, pending one blood test.  We were ready to go.


Tuesday night was better than Monday, though I wasn't crazy about our nurse - she wasn't great at communicating and had to wake me up several times overnight.  At one point, she woke me up to ask me when Mireya was going to eat in the middle of the night.  I don't like to wake her, so I didn't have an exact time, so I said 4, maybe 5.  She said ok, I'm going to come get her at 4 to give her a bath.  What?  Who wakes a baby up in the middle of the night to give her a bath?!?  But I was exhausted, so I didn't argue.  We waited around most of the day on Wednesday, but finally arrived home at 4.

Ready to go home!

After a long day, we're finally out!

What is happening???

Thanksgiving

It was great to be home, at first.  By Wednesday night, I was already starting to wish we were back in the hospital.  Mireya was very fussy, crying this heartbreaking little scream of pain.  We had a terrible night Wednesday night - I probably only got an hour or two of sleep.  Thursday was better.  We traveled to Chris' family in Narragansett, RI, with clear instructions that no one was to touch the baby. We were starting to adapt to her fragility.  She didn't seem as fussy and was eating well enough.  

Friday was another story.  It got worse and worse as the day went on.  First, she refused the bottle and would only eat from the breast.  Then she started to cry while nursing, at first popping off every few minutes to cry but eventually getting to the point where she wouldn't even start.  This was traumatic for me, hashing up old memories of Hope.  We'd try to get her to eat, and she'd just let out this awful scream.  We had sort of come to the conclusion that it might be reflux, so I ran out to the secondhand store and bought a Rock n Play for her to sleep in.  We discussed going in to the pediatrician, but I was pretty sure our pedi was not in and couldn't bear to explain everything to yet another person.  Finally, after a long day of fighting to get her to eat, I was starting to fear she was slipping in to dehydration.  Her fontanel (the soft spot on her head) was depressed and she was not making a lot of wet diapers.  It got to be 8:00 and we needed to make the decision whether to administer her lasix or not, a drug used to get extra fluid off, important post open-heart surgery.  This would clearly dry her out too much, but we didn't have permission to hold it.  We decided to call the hospital and talk to the cardiologist on call.  He asked us a bunch of questions and agreed it was a good idea not to give her the Lasix.  He told us to try to feed her again and he'd call us back in an hour.  If she had a good feed, we were to see the pediatrician in the morning, if not, we were to go in to the ER.  She had a pretty good feed (still wouldn't touch a bottle) and we decided she would be ok till morning.  Overnight, she had a few more good feeds.    She was quite comfy in her new Rock n Play and slept great for the first time in days.  So great that I had to wake her to feed.  While this is how things had been pre-surgery, it was not how things were post-op so it was scary to me.  I woke up with a start and was almost afraid to go in her room, like a brand new mom who had a baby sleeping through the night for the first time.  Of course she was fine.

Hope in the ambulance

Reya is not impressed

So as we headed to the pediatrician, I was feeling like she was on the road to recovery and he would tell me to continue to keep an eye on it.  Boy was I wrong.  He asked me to start explaining what was going on as he put a sat monitor on her.  I didn't even get to finish my explanation, when he exclaimed "55!  You need to get to the hospital right now.  I'm going to go call an ambulance!" and ran out of the room.  She didn't look like her sats were 55. I was kind of bewildered and started to wonder what I was going to do with Hope.  I felt like this was an overreaction and that I would be fine to drive her in.  It was Saturday morning and traffic was light so I felt like calling 911 was a little overkill, but it was too late, he had already called the ambulance.  The nurse also seemed to think he was overreacting.  Of course, to be fair, this is not the girls' normal pediatrician, just the one who happened to be on call.  His overreaction caused Mireya to start screaming, which only makes her shunt her blood through the large VSD (hole between her ventricles) making the oxygen flow to her body even lower.  I tried patting her to calm her and he yelled at me to stop patting so we could get an accurate reading, even though the patting would actually help the reading.  A few minutes later, 6 paramedics showed up with two ambulances.  It is all a little bit of a blur.  They hooked her up to their much more sophisticated monitor and it seemed a little less alarming.  They decided she would ride in her carseat and Hope would ride on the stretcher.  I'd ride on the side.  While I thought Hope would freak out, she did quite well.  The EMTs were so calm and so good with Hope.  They gave her a teddy bear.  I think she thought it was a fun adventure.  When we started moving, she looked at me with wonder in her eyes and said "Weeee".  They were good with me, too.  Very kind and caring.  There were a lot of questions asked, and because Mireya's heart condition is on the rare side, I'm not quite sure they had full understanding of how her heart works or the details of her repair. But I got my first ambulance ride out of it, so there's that, right?  One more life experience to check off the bucket list.
 

Looking pretty awful

When we arrived at the hospital, things were definitely urgent, but far less hysterical.   A nice nurse took Hope to get some milk and a snack so that I could focus on Mireya.  Chris showed up shortly after we got there.  They wanted to run a bunch of tests, put an IV in, do a chest x-ray, etc.  All of these things pissed her off royally.  As she became more and more pissed off, her condition deteriorated.  Her sats dropped into the 40s at times and she became grey.  Eventually she got so tired, that she passed out.  When she finally stabilized, it was time to decided where she'd be admitted - Cardiac ICU or the step-down unit.  They determined that her needs were too great and she would benefit from the one-to-one care provided in the CICU.  In so many ways, this was better for us, and I knew it would be better for her because it is a much more restful place.  At this point, Hope had been returned to us covered in stickers.  The child life specialist brought her back to us with toys and a balloon.  She was happy as a clam, amazing, since at that point, it was well past lunch time and nap time was looming.  Again, this was just another adventure in Hope's world.  The ER nurses helped us order lunch to be delivered to the CICU.

Once we got upstairs, more tests were performed.  More needle sticks, but she was so dehydrated, she had nothing to give.  They ended up having to do an arterial line as a last resort, but it's good because they shouldn't have to stick her for anything else now.

Meanwhile, Hope was entertaining the whole waiting room in the CICU with her antics.  She was singing and dancing and chattering up a storm.  Lunch came, but she was too busy entertaining to eat, lol.  This kid is a riot and I think she has been put here to make people smile.  She has made people smile since the day she was born.  We're so lucky she's ours.  Finally, Chris' mom showed up to take Hope home for a nap.

Feeling more like herself

Eventually Mireya settled down and was stable enough to eat.  I already saw a marked difference.  She was comfortable and seemed much more interested in eating.  She still wouldn't take a bottle, but at least she was willing to nurse.  She was starting to look a whole lot better and we started talking about transferring to the "floor" (the step down unit).  We tried bumping her down from 2L of O2 to 1L, the requirement for the floor, and she didn't tolerate it.  They also had to do a swab to make sure she didn't have any viruses.  In the meantime, she was put on "precautions", meaning the nurses and doctors have to suit up in masks, yellow gowns, and gloves to care for her.    

We decided I would stay since she could not be trusted to take a bottle.  We had dinner.  When we came back she was sound asleep, so we decided that we would go home so we could see Hope before she went to bed, picking my car up at the pediatrician's on the way home.  I'd take a shower (I hadn't showered since Thanksgiving morning),  and gather some stuff to take in to the hospital, since I literally went to the pediatrician with nothing but a cup of coffee and my diaper bag, then head back in by 9.  I never did get to drink that coffee...

Middle of the night selfie.  

When I got back things were calm, she had a good feed, and then she fell apart again.  She started screaming in pain and it took the nurse and I awhile to get her settled.  She went down around 10 and was awake again by 12.  I fed her, and it wasn't nearly as good as it had been.  She struggled a bit and again started screaming.  I was able to get her settled myself, but somewhere during the night shift, the nurse had to turn up the oxygen to 3L.   Once the O2 was up to 3L, she settled out and had a great night.  I also slept reasonably well, considering I am sleeping on a glorified bench in the back of the room.  At 4:30 they came in to do a chest x-ray, to make sure her lungs were clear.  She also got some meds and her middle of the night snack.  She fell right back asleep, and so did I, and slept until 8:15 or so, when they came in to examine her.  With the exception of the chest x-ray, this is very similar to what a night at home would look like, so hopefully when we do go home, she'll be able to resume sleeping at night.   We have a similar plan in place for tonight.

Today was all about recovery.  We let her sleep as much as she wanted, but we also made sure she got as much to eat as she wanted.  She nursed well in the morning and both Chris and I were able to feed her a bottle over the course of the day.  She got close to a normal feed on her last bottle, so that was promising.  She also got a blood transfusion.  Her hematocrit levels were on the low side, as were her O2 levels, even on 3L of blood.  By giving her a transfusion, it gave her body a boost, increasing blood flow to the body and increasing her oxygen levels.  She has benefited greatly from this transfusion.  It started around 10, and by 11, her O2 levels were back up to the 90s.  We were able to wean her slowly from 3L of O2 to 2L, to 1L, to 1/2L, to completely oxygen-free.  She has been off the oxygen since about 5:00 and is doing reasonably well.  Apparently the need for blood transfusion is not uncommon in kids like her, so this may not even be the last time she receives one.  The goal for tonight is to eat and maybe get her off the iv fluids.  

Her blood transfusion - thank you blood donors!!

Her monitor.  This is from today, so a pretty good reading

Her trends - the bottom line is her O2, the top is her heart rate.  Cool to see how they are in sync.  O2 levels go up, heartrate goes down and vice versa

So overall, what happened?  Likely it was multifactor.  The good news is that most of the scary stuff has been ruled out.  She had an echo, which looked to be clear.  They swabbed her for all the major viruses like RSV, the flu, etc and all were negative.  When she was struggling at home, I found myself wondering if we had been discharged too soon, but the more I have reflected upon it, the more I know this is not the case.  The number one factor here was likely the acid reflux.  We would not have known about that until we started regularly lying her flat, which didn't happen until she got home.  She is always propped up in the hospital.  So we got home on Wednesday and put her down to sleep in her crib, flat on her back.  This allowed the reflux to start brewing.  It makes sense now that we had a hard time getting her to sleep on Wednesday and Thursday nights.  She was incredibly uncomfortable and was trying to make it known.  The reflux started to snowball and it started to be uncomfortable to eat, leading to first refusing the bottle, then struggling at the breast.  By not eating, she became very dehydrated, very quickly.  They suspect that she is fluid sensitive.  Her lower hematocrit levels were likely due to the dehydration, but on a baby whose oxygen levels are already in the 80s, she may sometimes need a little extra help getting blood to the body.  Finally, we were able to witness firsthand what happens to her sats when she gets upset.  The open VSD causes her to shunt her blood back and forth between the ventricles, which causes a drastic drop in her sats (likely what happened at the pediatrician, in addition to already being low due to dehydration).  Yes, some of these things could have happened if we had still been inpatient, but the biggest factor, the reflux, would not have reared its head until we got home.  In fact, Chris had a good point this afternoon - perhaps she has always had reflux and this is why she's never really liked being put down.  All in all, this whole experience is a great reminder as to how medically fragile she is.  This has been easy for me to forget, given we had her home as a "normal baby" for 10 weeks and due to how much bigger and stronger she is, compared to how Hope was.

This could have been a really scary situation.  I've come to expect anything from my girls, so I remained calm, even when the pediatrician went into a frenzy.  Both Chris and I have become familiar with most of the medical jargon used in the cardiac wards and that has helped us feel more comfortable in most medical settings with our kids.  We are usually more versed in our daughters' medical conditions than many who are actually in the medical field.  I think this has helped me feel more comfortable in urgent situations regarding my kids' health.

I will say Friday was one of the more stressful days I've experienced as a mother.  In some ways, I found this day as stressful, and maybe even more stressful, than surgery was.  When the girls were in surgery, I knew it was out of my control and that they were in the hands of a confident and talented surgeon.  For us, it was our child's life, for him, it was another Wednesday.  I found a lot of comfort in this.  On Friday, it was completely in my hands, and I didn't feel confident at all.  I stressed most of the day about whether she was ok and what to do.  I wondered if it was normal.  I had so many things to do around the house, and couldn't focus on any of them.  I kept checking her diapers, which were light (not good!).  I kept rubbing my hand over her head, feeling for the depression in the fontanel and trying to determine if it was more sunken than it had been.  My anxiety levels were high and there were a lot of tears.                

But perhaps the worst feeling I have had at all is that I had not been a good mother through all of this. Should we have skipped Thanksgiving?  Should we have taken her in, at least to the pediatrician, on Friday?  Should we have discontinued the lasix sooner?  Should we have taken her to the ER Friday night, before it became much more urgent?  The way the pediatrician reacted, I certainly felt like I had not done the right thing and that I was the worst mother ever.

As always, my confidence was restored and my anxiety was lowered when we walked through the doors at Children's. This place never ceases to amaze me, and I have the utmost respect for every person who works in this hospital.  From the cafeteria workers to the cleaning staff, from the receptionists to the clinical assistants, from the nurses to the doctors, every single person that works in this hospital is amazing.  They are incredibly good at treating the whole family and making you feel included as part of the medical team.  The ER staff readily took Hope under their wing so that she wouldn't feel neglected or scared as a dozen people gathered around her baby sister.  Every doctor and nurse defers to the parent, completely aware that as parents, we are the best source when it comes to our children's medical condition.  Two quotes from doctors that helped restore my wavering confidence as a mom:  "You did everything right" and in reference to the fact that we believe this was reflux related "Parents are almost always right".  After the anxiety I felt and my encounter with the pediatrician, I needed to hear these things.    Since we came in yesterday, I have felt less stress than I was feeling at home.  I hope that this experience will help me to become even better at managing my kids' more complicated than average medical needs.  We are so grateful for this place

We also continue to be grateful for all of the support we have received.  The food has been amazing.  Not only has it kept us fed and will continue to feed us for a while, it has also helped to feed our army of helpers while we've been at the hospital.  And Hope has had so much fun playing with everyone who has come to watch her.  We'll never be able to find the words to thank all of you, especially those of you who we've changed plans on or who have been really flexible allowing us to work around how things were going here.  

Overall, my takeaway....always trust your mom gut, and when your mom gut tells you something is wrong, trust it, it's probably right.

Resting peacefully

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.