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.

High Maintenance

Resting peacefully in the CICU

We're learning that our second daughter is a bit high maintenance.  This has becoming more and more apparent as she has settled into life outside of the womb.  Most of the time, she is pretty chill.  She never cries, unless she is hungry.  She also cries when she is put down.  In the last few weeks, she has pretty much demanded to be held all the time.  If she is being held she is happy as a clam.  This is very hard when you're also trying to entertain a toddler.  I used to complain that Hope was not a snuggly child.  Well, I got my due justice.

This is an important fact that had me worried about this hospitalization, and I was right to worry.  She has been equally high maintenance since we arrived at Children's yesterday afternoon and it has already shaped her hospital stay.

We arrived around 3:20.  This was the calmest hospital admission we've ever had.  Our first admission was when Hope was born.  She arrived at Children's by ambulance in the middle of the night.  Our next admission was through the ER with a listless 1 year old with a 104 degree fever.  This time, we showed up with our peacefully sleeping baby, checked in to the admitting office and were sent upstairs.

We checked in at the desk and they sent us down the hall, to room 831,  As we turned the corner to the room, Chris commented that it might be the same room that Hope was in on her first trip to the cardiac step-down unit.  Well, it was,  And it was the same bed space.  Talk about creepy.  I stood at the door for a minute, couldn't bring myself to go in.  You see, this room is a pretty tough space.  It is a corner room, so the window bed has natural light, the bathroom, and a fair amount of space.  The hall bed, our bed, is cramped, to say the least.  Its dark, everyone can see into your room.  There's barely enough room for two chairs.  As we walked down that hall and into that room, I had some serious flashbacks.  This is the room we were in when Hope came down with the bowel infection that ultimately determined she would have surgery at 12 days.

Anyway, we met our nurse, went over admission stuff, and started to settle in.  It was clear they had been waiting for us - lots of nurses and doctors came in and it was pretty busy.  We had consent forms to sign, history to go over, chest x-rays to be done, etc.  She smiled at all of the nurses and put on a show, charming them all. They struggled to find good O2 levels and when they did, they were a lot lower than we anticipated.  They were hovering in the 60s and she was definitely a bit blue.  I had thought she looked blue on Saturday and even went so far as to email her cardiologist to ask him if we should do anything.  I felt a little crazy doing that, but it seems I was right to be worried about it.  A mother's gut feelings are not to be ignored.  All of this confirms that this surgery is perfectly timed.
Around 6, we finally had her settled and asleep, so we decided to go grab some dinner.  When we got back, things were busy in our room.  Apparently, Mireya woke up 10-15 minutes after we left and freaked out because she was no longer being held and we were nowhere to be seen,  She desatted and they decided it was time for oxygen,  What we didn't know is that she desatted so bad that she required morphine to settle her down.  

Needing a little extra support

This morning we got up early to try to get in to the hospital before she was taken down to the cath lab. Just as we were getting ready to leave, we got the call telling us she had been bumped up to the first case and was on her way down.  So instead of heading right in, I decided to go for a run and Chris got some work done.  We got in around 10, and by 10:30, she was ready for us to come back.  The cath had gone well and confirmed much of what we saw on the CT scan.  She has 3 major collaterals.  This cath will help guide them on Wednesday.  The plan is to go in and place the conduit between the heart and lungs.  They will be able to see the collaterals a little bit better and determine what collaterals need to be kept and which ones can be gotten rid of.

We spent the rest of the morning in the recovery room waiting for her to wake up and be able to be weaned from oxygen.  How much oxygen she required would determine where she would go from recovery.  2L would require a trip to the CICU, 1L or less would send us to the step-down unit.  By 2:00. we had her off oxygen and on room air, so we were going back to room 831.  They put her back on oxygen to take her up.  When we got up there, lots of people came to check on her.  She was hungry, so we fed her.  After she ate, the nurse practitioner came to examine her and we noticed her belly was all bloated.  It was rock hard and all distended.  It looked incredibly uncomfortable, but she was calm as can be.  They decided to do a chest xray to see what was going on.  That did not go over well but showed us that there was nothing to worry about.  Then they needed some blood.  She was quite perturbed and unhappy by the situation.  Her sats were all over the place. They did not like this on the step-down unit, and decided it was time to get rid of her.

Out of the cath lab and a little swollen

So she is now resting in CICU.  By the time we got there, she had calmed down and her sats were in the 80s.  The CICU nurse didn't really think she needed to be there.  It didn't really bother us that we had been moved over.  Now we have a really nice private room and a nurse watching her like a hawk. And our high maintenance child is finally resting peacefully.    

Resting peacefully in the CICU

Getting ready to board the rollercoaster

No zipper, but not for long

The fun is about to begin.  We will be admitted to Boston Children's cardiac ward Sunday night.  

Its amazing how much can change in just a short time.  10 weeks ago, I was still pregnant, the school year had just begun and I was feeling relief that I had made it to the first day.  I was feeling stressed because my sub had quit on the Friday before school started. On the second day of school, I learned that I would be induced 2 days later and while I would have been happy to wait another week for professional and personal reasons, I was mostly ready to welcome our second child to our family, far more ready than I was when I learned I was to be induced with Hope.  9 weeks ago, on September 5th, we brought Mireya home. The past 9 weeks have been unexpected.  While they have passed quickly and it has certainly been busy, it has also been quiet, amazing, wonderful, overwhelming, and terrifying all at the same time.  We never expected Miss M to get to come home so soon.  We expected immediate transfer to the CICU at Children's, not a visit to the NICU at Beth Israel.  We expected a 4-6 week hospital stay and to bring her home sometime in October, similar to Hope.  It would have been a long haul, but we knew what to expect.  When we were told she'd go home to grow, we didn't know what to expect.  We had never had a newborn.  Uncharted territory.  A few weeks ago we passed the milestone of the age that Hope was when she came home, and we were back in familiar territory.  We survived and while it is now a blur, I'm glad I got to have the typical healthy newborn experience.  In some ways I feel like I got back a piece of what CHD has taken from me.

The first week or so was terrifying for me.  Mireya slept ALL THE TIME.  We had to wake her to eat more often than not.  I was worried this was an effect of her heart, but in fact, she's just a kid who really likes her sleep.   I didn't know exactly how much newborns sleep.  I expected to have a small baby that did nothing but cry, but instead she did nothing but sleep.  Terrifying for this heart mom.

It took us a few weeks to figure her out.  The first few weeks she didn't really gain weight.  We were sent home and I was told I could breastfeed, but because we wanted to see her gain weight, I was to offer her a bottle and pump too.  It was exhausting.  All we did all day was feed.  She didn't gain.  We learned we weren't waking her enough.  So we started waking her every 2-3 hours.  She still didn't gain.  We added formula.  Minimal weight gain...  I had thought she was latching well, but indeed, she was not, so I started using a nipple shield around 3 weeks and noticed a remarkable difference.  We suspect her mouth just wasn't big enough.  It seemed to be going so well, that we dropped the bottles. Still only minimal gain.  At this point, she was 4 weeks old and our cardiologist started threatening to send us to nutrition, where they would likely recommend a feeding tube.  We bargained for one more week and promised to give her a formula fortified feed twice a day, giving her extra calories. This did the trick.  By the following week, she had gained half a pound and has continued to gain about a half pound a week since.  At today's weigh-in, she was 8lbs 14 oz.  We were really hoping for 9, but she was close, and should be comfortably over 9 by her surgery next week.

full belly

Here are some pictures from the early days still in the NICU, her homecoming, and her first days at home...  

Sweetness

First outfit

Sweet sleeping baby

All ready to go home

Leaving Beth Israel

Out to lunch at Kelly's Roast Beef on the way home

Home sweet home

Her signature face - "Puss"

"Puss" and her daddy

But back to reality next week.  Back to our 'normal'.  As we knew when we brought her home we would have to give her back.  For a little bit anyway.   Like I said above, on Sunday we will be admitted to Boston Children's in preparation for a catheterization on Monday.  This will give her surgeon a road map of her complicated heart.  The current plan is that she will be inpatient until Tuesday, then we will go home for a night before returning on Wednesday for her first open heart surgery.  This surgery will be to place a conduit between her heart and lungs.  She will be in the CICU for 4-5 days, inpatient for a total of a week to two weeks.  We have a 50/50 chance of getting home in time for Thanksgiving.  

We've had a lot of doctor's appointments.  About one a week.  Its funny, while I was pregnant, I was very focused on the fact that I had about 1 appointment a week starting at about 19 weeks (when they first noticed the overriding aorta).  For whatever reason, I never stopped to think it would continue after she was born.  So for the last 30 weeks, I have gone to at least one doctors appointment a week, with a few exceptions. This isn't going to stop anytime soon, either.  Her first week home we went to meet her pediatrician, had a cardiology appointment, then had a follow up with the pediatrician.  The cardio appointment included a CT scan, so that we could get better imaging of her heart, in particular, the collaterals.  Here she is getting ready to go in, in her johnny, and as she excited the tube.  It was quite the experience to send your one week old into a CT scan.  We got to watch and it felt very science fiction.

Ready for her scan

Coming out of the CT scan

This is what she thought of the situation

The CT scan confirmed what we suspected and gave us a little more detail.  We were able to see 2 big collaterals and a couple small ones, confirming the MAPCAs diagnosis.  This confirmed that our plan of action to perform surgery at about 2-3 months was a good one.  Once we had this solid diagnosis, we could move forward with scheduling the surgery and picking a surgeon.  Hope's surgeon is no longer an option because he is now in Louisville, KY, so we were given the choice between Dr Emani and Dr Baird.   While I've heard both names, I didn't have any idea who was better, so we let Dr Friedman pick for us.  A week or so later I got a call giving me a date, Nov 16, and our surgeon's name, Dr Christopher Baird.  Most of the rest of our appointments have been follow-up visits and weight checks, somewhat alternating between the pediatrician, who has been doing the normal baby stuff and keeping an eye on her weight, and the cardiologist.   She has been doing well, other than normal baby stuff - blocked tear ducts that made her eyes all crusty and gross for the first 8 weeks as well as a bout of thrush, a yeast infection in her mouth.  No blue spells, no heavy breathing, none of the things we've been taught to look out for.  Her O2 levels have been slowly declining, just an indicator that we are right to have the surgery Nov 16.  At today's appointment, they were in the upper 70s to low 80s.  She started at 92-95 when she was born.  Hope is 99-100, as are heart healthy people.

It has been nice getting to be a normal family adjusting to their newborn.  She is a pleasant little baby and as I said earlier, she likes to sleep.  Most nights I have to wake her to eat around 3:30-4.  She then goes right back down until about 8.  She rarely cries, unless she's hungry.  Her pediatrician can't get over how chill she is.  I can't believe it's possible, but she's even more chill than Hope was.  The only difference is that she prefers to be held.  She does not want to be put down for more than 10 minutes most days.   The dust is finally starting to settle and she is currently peacefully napping in her swing, but that could change any minute.

Daddy and his girls

In her first 6 weeks at home, it was just me and Mireya.  I loved having this one-on-one time to get to know her, while Hope stayed in the daycare routine.  We went to many of the same activities I used to take Hope to when she was under a year.  It was great and just like with Hope, I met some great moms with babies close in age to Mireya.  My favorite activity is the Arlington JFCS baby group on Fridays, followed by lunch with the moms and dads.  I have met so many wonderful moms and dads through this group, both with Hope and now with Mireya.  I am still in touch with the moms from my time with Hope, we are committed to our kids growing up knowing each other.  I hope to continue to get to go to my Friday group once a month or so.

1 week old and chillin at the Arlington baby group

Hope has been home with us about 2.5 weeks now.  It's overwhelming but I've been trying to find activities to keep her busy in the mornings.  She naps most of the afternoon.  Most days we get out and do something and so far, its not easy, but we're all adjusting.  Some days are harder than others and both girls can be incredibly needy.  They tend to feed off of one another, so it just makes it double the fun.

Hope was "helping"

Best friends already

Lil' Red Sox fan

When Mireya was 3 weeks old, Sanders had to have dental surgery, so I took Mireya with me while my parents entertained Hope.  We had to kill some time while the traffic died down, so I was able to get her out for her first hike!  Here we are at Noanet Woods in Dover.  Out in the distance you can see Boston.  It felt great to get outdoors and to introduce her to nature.  She even got to have her first "picnic" on top of this mountain :)  As we were hiking back, some ladies that I suspect had bigger kids, stopped me to fuss over my newborn.  They congratulated me for getting both of us out there and insisted on taking a picture.  They told me how beautiful I was.   It was really empowering.  Since then, M has been on two more hikes.

First hike!

Hiking at Great Brook for Hope's birthday

More pictures of everyday life....

Tummy time is exhausting

Learning to smile (around 6 weeks)...

6 weeks

7 weeks

8 weeks

9 weeks

Bathtime...

Naptime...

Baby burrito

Daddy makes a comfortable place to sleep

Already in 3 month clothes!!

So peaceful in her cozy sleeping bag from a Belgian friend

Learning to sit up!  Look at that neck control!

Her many outfits, so many of which were Hope's:

"Ray Bucknell

Little Spanish outfit

Another Spanish outfit

One of my favorites

Happy Halloween (this was Hope's - she never wore it because she slept through Halloween)

The surgery date has been looming in the distance for quite a while.  I can't believe it's next week. I've done a pretty good job at keeping it off my mind.   Many people ask how I am doing.  My reply is usually that its still too far away to think about.  It won't be real that we have to give her back until I start to pack bags and we pull into the lot at Children's on Sunday.    We have an incredible support crew.  So many people have offered to help and we're so grateful. Of course, both of our families have offered to help.  Hope and Sanders will go to Chris' parents for a few days at the beginning, but mostly I want them to be home because it will force us to get out of the hospital to be with them, creating a little more normalcy and making things a little healthier for us.  Mireya won't remember if we're not there every minute of her hospitalization.  My parents offered to come up, but I'd rather them be here when we can spend time with them and don't have to juggle the hospital.  We've already celebrated Thanksgiving with our immediate family, just in case we're inpatient (50/50 chance).  A group of friends have started a meal train, for which I'm so grateful.  Some are even bringing food this week for us to freeze.  Others are planning to bring food to us in the hospital.  Lots of our friends have offered to come play with Hope, so many that we set up a spreadsheet.  We have people to keep her company pretty much every day of the predicted hospitalization at this point.  I feel like we're going into this in good shape.  Its so much easier when you know what to expect.

Visiting the Prouty Garden for the first (and hopefully not the last) time

Honestly, I don't really know how I'll feel until we have to hand her over next week.  She is a lot bigger and stronger than Hope was, but we've also had time to get to know her.  Either way, it's never easy to hand your baby over to someone who is going to crack their chest open and put their heart on bypass.  I will do my best to update on FaceBook, Instagram, and here.  Please keep us in your prayers.

Side by side of my girls at 6ish weeks old