Bittersweet - The beginning of a long, arduous road

Sleepy girl

Most of you probably wonder where we got the name Mireya.  It is a Spanish name that means "miracle".  In picking a name, we knew we had to pick a name with meaning.  I knew we couldn't name our oldest Hope and give our second child a meaningless name, but at the same time, we didn't want to get all cliche and name her Faith, Grace or Charity.  We struggled with this choice.  Hope came naturally to us.  With all we had gone through to get to her, and all that we knew we had ahead, it was obvious.  For months, we looked up names with so many meanings - miracle, strength, warrior, love, etc.  Mireya was different and I liked that it was Spanish.  I have always liked the French derivative of it, but was afraid of how people would pronounce it.  Mireya is a little easier.  She will be Reya for short.  Given what we've learned about her since her birth, it seems to be the perfect fit.    

Today I am being discharged.  Without my baby.  I've done this before - it might be one of the worst feelings as a mother.  I knew this day would happen, again, but it doesn't make it any easier.  The birth of a child is supposed to be a deliriously happy time. The way we do it seems to always be filled with worry, stress, anxiety, sadness.   I see the other families on the postpartum floor gathering in their rooms, which honestly are more like hotel rooms than hospital rooms.  They are joyous and happy.  Guests come in and out.  Babies cry.  But when I am here, I am sitting here alone, my only company the whir or the yellow, hospital grade breast pump.  Nurses come in, and it feels awkward.  They are used to being cheerful and happy, because most of their patients are experiencing the happiest time in their life.  They all know where my baby is and what the current plan is - its in my records.  They let me come and go, and accept that I won't be in my room most of the time.    They are supportive, but reserved.

Mireya has been pretty sleepy since her fast and fierce arrival.  I guess it was exhausting.  We have been busy since then trying to figure her out.  She has definitely thrown us a few curve balls in addition to her quick entry into the world.  

Thursday night, when they went down to the NICU, Cardiology came over from Children's to check her out.  The news is not as good as we could have hoped, which is why it has taken me a little bit to post about her condition, as we were waiting to talk to our own cardiologist and see what he thought the plan would be.  Cardiology ended up doing two echos on Thursday night because they couldn't find the pulmonary artery in the first echo.  Then they couldn't find it in the second echo either.  They spent about two hours looking for it, without finding it.   They agreed upon an official diagnosis - Tetralogy of Fallot with Pulmonary Atresia and MAPCAs.  When we learned that Mireya also had a CHD, there were three possible diagnoses - Truncus Arteriosus, TOF / PA (no MAPCAs), TOF / PA / MAPCAs.  The first two were the more favorable diagnoses.  TOF / PA / MAPCAs is on the spectrum of worst case scenario in this situation and Mireya is a moderate case.  When Hope was diagnosed, the MAPCAs was the uncertain part and we were so relieved when we learned that she only had two collaterals, essentially taking the MAPCAs out of her diagnosis.  The MAPCAs make things a lot more challenging.  Our cardiologist, Dr Friedman, came by yesterday afternoon to help make some decisions and a final diagnosis.  He did another echo and was able to locate the pulmonary arteries, which is definitely good.  It makes things a little easier.  

So what is MAPCAs?  "MAPCAs" stands for "multiple aortopulmonary collateral arteries."  In TOF with PA, the pulmonary valve is closed, making blood flow through the pulmonary arteries to the lungs impossible.  The body is then either dependent upon a Patent Ductus Arteriosus (PDA) or these MAPCAs to deliver blood to the lungs for oxygenation.   The problem with them is that it is not an easy fix.  With Hope, she only had two collaterals, so the were easily replumbed into her anatomy, a conduit was placed between the heart and lungs, and the VSD (the hole between her chambers) was patched.  In Mireya's case, she has at least 3 and maybe up to 15 collaterals, but probably on the higher end of that spectrum, so it's not as easy to just plug them in. It will be a multistep process.  Her pulmonary arteries are small, so first she will need to get a little bit bigger.  Once she is bigger, in a few months, they will place a conduit, which will allow blood flow to go in the appropriate direction.  This will require open heart surgery.  Then they will start the process of figuring out what to do with the MAPCAs.  Some will be small and unnecessary and will be gotten rid of.  Others will be bigger and important and need to be kept.  Others will be small, but important, so they will need to be dilated by catheterization.  Once the collaterals are in position, the VSD will be closed via open heart surgery.  Up to this point, it has to stay open to help control the pressure in the right ventricle, otherwise you risk heart failure.  TOF / PA / MAPCAs is a multi-organ (heart-lungs) illness and if things were to get really bad, transplant is not really an option.  This is the simplest explanation I can give.  MAPCAs is a dreaded diagnosis to many.  It is rare, complicated, and no two cases are alike, making it harder to fix.  In summary, over the next few years, Mireya will undergo 2 or more open heart surgeries and many trips to the cath lab.  We will be in and out of the hospital - 2 days here, a week there, etc.   When we're not in the hospital we'll be going to check ups. Because of all the hospital stays, she's at higher risk for developmental delays.  Due to her anatomy, she may be more physically restricted because she may not tolerate heavy exercise.  

On a positive note, she will be coming home sooner rather than later.  This wasn't the desired plan.  I guess you could say its a concession prize for the long road we have ahead.  We were hoping to get the surgery over and done with and get on with life.  We had been warned during our fetal echo that if Mireya were to have MAPCAs, this is what would happen, but we felt pretty confident that we had ruled it out.  So we were sort of blindsided by this new turn.  Its funny how you are affected by what you are familiar with.  After Dr Friedman made his final diagnosis, the NICU team was all celebratory.  They were all saying, well that's great news!  In their world, going home is the end result and means success.  In our world, going home is not what we wanted right now and is not necessarily a happy thing.  It means we have a lot ahead of us.  I am trying to be happy about it - I know there are so many parents that spend time in the NICU that never get to take their babies home, so I am keeping those parents close to my heart, but at the same time, I am tired and want this to be over already.  I will try my hardest to enjoy bonding with my daughter and helping her grow big and strong, so that she can kick CHD's butt.  We will get to experience things with her that we did not experience with Hope.  When we brought Hope home, she was 6 weeks old.  She had been sleeping on her own in a crib, so she was already a fantastic sleeper.  She was already on a solid eating schedule.  While she was helpless, sick, and small, she was not as much a floppy newborn, but much more on her way to being an infant.  Mireya will come home as a newborn.  Hopefully she will learn to nurse and will be able to continue that post-op, relieving me from full-time pumping.  We will be able to bond with her earlier, so perhaps she will be more affectionate.  In the long run, this may be better for Hope, because it won't take us away from her for an extended period of time, but instead a little bit here and a little bit there.    

So please forgive me if we start to fall off the face of the earth in the coming months / years.  Know that we still care about you, but are busy trying to help our newest warrior conquer CHD.  We still love each and every one of you and are so grateful for the support so many of you have offered us as we fought it with Hope.  We are touched by the well-wishes and congratulations we've received as Mireya entered the world.  We appreciate and are humbled by all that our friends and family have done for us over the past few years.  It has not been easy and the end is no longer in sight.  There is a long road, arduous road ahead.           

We will get through this. God has a plan, and he chose us.  We have been lucky enough to be given another miracle and we will make the most of it.    

Squinting at the bright lights...where am I?

Happy Dad

Welcome to the world, sweet girl

Woah, that was crazy fast!  Just when we thought we were settling in for a long night of waiting, labor took off like a freight train!

We moved over to a private room around 4 and as far as I know I was 3ish cm dilated with light contractions.  I was sitting in bed in my own clothes, and I said to Chris, "I should probably take these pants off in case my water breaks" he said, "yeah, that's probably going to happen soon".  So I stood up, took off my pants, and felt a trickle, then a stream.  With that, it broke.  That was around 5.  Labor picked up from there and at 5:45 we decided to order food.  I wanted food in my belly before things picked up and I might need an epidural, after which, I wouldn't be allowed to eat.  The food was delivered around 6:30 and by then the contractions were every two minutes and STRONG.  I tried to eat, but couldn't get much down in between contractions.  I asked them to come check me.  I was at 6cm and not entirely thinned.  I knew it was epidural time.  They were in within minutes.  It seemed to take forever to get it in, I think they were teaching someone.  I had to fight through contractions and then a strong urge to push.  I told my nurse, Abby, I really wanted to push and she told me to fight the urge.  She called the doctor, Dr Mulla, because she wanted her to be there when they laid me down.  They finally got the epidural in, I got some 

relief, and she checked me.  I was fully dilated and +2.  It was baby time.  Chris was still out of the room from the epidural.  They said they were going to call NICU, so I knew they weren't kidding!!!  I asked for them to get Chris.  Chris came back in and I said, it's time.  That was a little before 7.  She arrived at 7:12.  By 8, I was eating my cold dinner, which wasn't actually even that cold...lol.  I probably had to push about 10 times.  I got to feel her head coming out, which was cool.  And then they laid her on top of me as soon as she was out.  

The rest of the night was pretty busy.  Chris followed Mireya to the NICU, where she would stay, rather than be transferred to Children's.  I hung out in the delivery room where they waited for the epidural to wear off so they could move me to a wheelchair.  I caught up with friends and family and shared the news, while Chris texted me from downstairs.  Cardiology came over from Children's to do the echo, but more on that in the next post.  My nurse drove me by the NICU on my way down to postpartum.  I got there in the middle of the echo, so I was not able to hold her and we didn't stay long.  They got me settled in and eventually Chris came down to get me when the echo was done.  We spent another 30 min upstairs snuggling Mireya, then back to my room to settle in for the night. 

Here's a comparison of my two girls at birth.  They look nothing alike.  Hope is on top, Mireya on the bottom.  

 

Hurry up and wait

Today's the big day.  My doctor's have decided I don't need to be pregnant anymore and that it was time to induce.  Since I transferred over to Beth Israel, my blood pressure has been slowly creeping up.  This past week it was high enough that they didn't want to take any more risks.  It was not that bad - 150/90 and nowhere near how bad I got with Hope, but they decided it was time.  I was able to buy one extra day - they wanted to induce Wednesday and I pleaded for Thursday.

This extra day was really important to me.  I've talked a lot about how going back to work for the first day was really important to me, but once I got there, I realized that seeing kids was even more important.  On Tues morning, the day that kids were to return, I dropped Hope off at daycare and headed in to the city for my appointment.  My blood pressure was high and the alarms started going off.  I knew they were thinking induction this week.  In talking to the nurse, it was unclear how much room for negotiation there was.  She said they may send me right upstairs, or it might be Wed, but it wouldn't be any later than Thursday.  I asked them for Thursday, mostly because I wanted to go to work Tues and Wed, but I didn't tell them that.  I told them that my parents had to drive up from NJ and it would make it easier for everyone if we waited until they could get here so that they could take Hope to daycare and pick her up.  They quickly gave up on the idea of sending me right upstairs.  They decided to take some blood (to look for signs of preeclampsia) and send me on my way.  As Mar, one of the nurses I have gotten to know, took my blood, I asked if there was room for negotiation, she said she thought so.  She took my blood and sent me on my way, telling me she'd call me immediately if the blood work indicated anything was wrong.  I went back to work and got there just in time for homeroom (the kids were on a late entry schedule).  I saw my classes, ran around the school to tell administration that I'd be leaving earlier than planned, and then went to work getting my room all set for the sub and waited for Mary to call me and tell me when they'd be inducing.  She called around 4 to tell me she had advocated for me and got me Thursday!  Woohoo!  This was a good compromise - I would have liked to have stuck around through Labor Day, but they felt strongly it was time.   I had won Wednesday back and I was thrilled for multiple reasons.  First of all - the sub we had hired back in June to replace me decided to quit the Friday before school started.  So not only did I have a lot to do, but we had three candidates coming in on Wed to interview.  I really wanted to meet them and have a say in this process.  Second, and more importantly, both of my junior classes (the classes that were my sophomores last year) met on Wednesday.  I knew they'd be so disappointed if I wasn't there, as would I.

Yesterday was a long, arduous day.  I had spent Tuesday afternoon prepping my desk / files /etc not knowing if I was going to make it back.  There were a lot of post-it notes everywhere.  I spent the little bit of "free" time I had on Wednesday taking care of those post-it notes.  I think by the time I left there were only 4 or 5 post-its.  Everything else was neatly organized into binders.  I was able to get some time to write a welcome letter and a list of important information.  I feel really good about how I left things.  We interviewed 3 candidates.  It was immediately apparent that the first candidate was not going to work right now.  We liked him and he had potential, but not right now.  The second candidate was acceptable and would work, so we went into the teaching day knowing we had a potential candidate.  We met the last candidate after school.  He had less experience than the first candidate, but we all felt strongly that he'd be a better fit for our kids and department.  I am happy with the choice and I think he will do a good job.  I think he will fit in seamlessly.   This was my first experience with interviewing.  It is really weird to interview people for your own job that you are planning on coming back to.  It was exhausting, especially since I felt like I was running non-stop from the time I got up.  I worked late both Tuesday and Wednesday, which was a far cry from the cake walk I thought I'd be going back to (I thought I was going to get to transition my sub and let him teach my classes).  So here we are....

The whole process of induction is long.  Monitors - fetal and maternal monitoring, blood pressure, blood draws, etc.    Then the medicine.  In my case, we went with misoprostil.  This is what I had with Hope.  It helps open the cervix.  With Hope I got misoprostil twice and then my water broke around 3PM.  Early labor started shortly after and active labor started around 7.  I was able to avoid pitocin.  I'm hoping for something similar this time.  It is clear I am not in as bad of shape this time. With Hope, they put us right in a private room that I'd ultimately deliver her in.  I was cooped up in that room with the door shut for 16 hours.  This time, we're in a common staging room.  It seems like we're here with most of the c-section people and have watched several families go off to the OR and come back with babies in their arms.  The upside of this experience is that they allowed us to leave the floor to go down to the cafe and have lunch, which was great.  I am not being continuously monitored like I was with Hope, when I was essentially chained to the bed.  I am hopeful I will be allowed to wander the halls while laboring.  I am starting to feel light contractions and looking at the monitor, they seem to be pretty regular, so fingers crossed that things will get moving soon.  Update (3:30PM):  They just checked me and I've progressed to 2.5cm and 70% effaced.  I'm having regular contractions and they're definitely getting bigger.  They just told me we'll be moving to a private room shortly.  Yay....ready to get going!!   Update (4:50 PM):  We have been moved to a private room.  Contractions are getting stronger.  I am to be chained to the monitor for the rest of the night :(  Boo.  Update (5:10):  My water broke about 10 minutes ago.  I was still wearing my own clothes and said, maybe I should take these off.  I took them off and with that, there was a gush and a trickle.  We're on our way....

Now that I've had time to adjust to delivering earlier than I really wanted to, I am mostly excited.  We finally decided on a name on the drive in to the hospital as we drove down Park Dr, through the Fens. We've had it narrowed down to two for a while, but hadn't committed.  It will remain a secret until she makes her debut :)

I wasn't as weepy leaving Hope as I thought I'd be.  She was a happy little camper this morning.  She was excited to see Grammy and Granddaddy and even happily complied with our photo shoot.

Last picture as a family of three

Kisses for my big girl

Where's baby sister?

Kisses for baby sister

38 weeks 3 days

I thought I'd cry when I said good-bye, but I was ok.  Grammy dropped her at daycare at this morning and got to see how much she loves it there, which is fun :)

Well, that's it for now.  The next time you hear from me will be the big announcement.

Here are some pictures to leave you with:

37 weeks

First day of school!

Walking to get some ice cream

Making sure Mama rests by falling asleep on my belly

Ready for her first kid's race

Got a medal!

Happy to have been able to run a 5k at 38 weeks

Hope's new crib (big girl room photos to follow)

Never leave a toddler alone in her baby sister's newly organized nursery.  This trail continued out into the hall

Views from our delivery room

Ready for baby girl #2

NICU gowns waiting for our warrior's welcome party