Mission accomplished

Yesterday was a long day.  In fact the next few days are going to be long days, as we wait for tubes and machines to slowly be peeled off of our sweet baby girl.  

We got in to Childrens yesterday at our normal time.  We knew they'd be taking her in around noon, maybe a little later, so this gave us a couple hours with her, to snuggle and let her know how much we love her.  Even though the poor kid hasn't eaten since Saturday, she was peaceful and calm, did not cry once all morning.  When we first got there she was wide awake, so that was nice.  She was also very snuggly.

Sleeping peacefully pre-op

They took us down around 1.  We were allowed to carry her and hold her until they took her back.  We answered a bunch of questions, the nurses reassured us, the anesthesiologists came out to talk to us, and then they said it was time.  We each hugged and kissed her then handed her off and watched the nurse carry her around the corner, still sleeping.  I have never done anything so hard in my life.  I cried.  

We decided to pass the time by going in to Boston for lunch and a couple drinks.  It was a beautiful day, so we ate outside at Stephanie's.  I had a pineapple infused vodka and a glass of rose.

Then we wandered around a little bit.  We went into Trinity church to say a prayer.  We sat in the courtyard at the Boston Public Library (one of Boston's most peaceful spots) and just tried to kill time.  

We headed back to the hospital around 4:30.  We had been getting updates all along.  First, that the incision had been made, then that she was on the heart-lung bypass machine, then that the repair had begun.  When we arrived back at Childrens and went into the waiting room, the nurse liaison came back to give us another update - the repair had been made and they were waiting to take her off the bypass.  This was around 5.  My stomach was a mess. 

Around 6, she came out again to tell us she was off the bypass and her heart was beating on its own again. During this time my uncle dropped by to visit, as he was in town for work.  He helped us pass time for a few hours.  We were grateful for this.  At 7, they sent us back up to the cardiac ICU to wait for Dr Pigula, her surgeon.  He came out around 7:45.  All had been done to his satisfaction and according to plan.  He told us we could get back to her in about an hour.  

We got back there around 9:15PM  We had been well prepared for what we saw, but it was still scary.  She is hooked up to tubes, wires, pumps, machines, etc.  She 

is swollen almost beyond recognition.  Her chest is still open. They have her sedated and paralyzed.  She is pale because they have her temp lowered.  It is a fine process of regulation as her body adjusts to the repair, which will likely go on intensly for the first 24 hours, and then things will steady out, and they will start the process of healing.  

First they will close her chest back up.  Then they will start to bring her out of sedation.  Eventually, but probably not until Sunday, we will be able to hold her.  Sometime next week she will leave ICU, and then somewhere down the road she will come home.  

We only stayed at her bedside for 30 minutes or so.  The nurses were busy tending to her and we didn't want to interrupt. There's not much we can do for her right now, other than take care of ourselves.  I will stop in for an hour or so today and tomorrow, and as they start to bring her out of sedation, we will spend more and more time there.  For the next couple days, we're going to do some normal things - Chris went to work, I'm going to run errands and get a hair cut, I'll go to my Thursday night running club event, Chris will go to Krav, etc.

We're on the right path and relieved the surgery is done, but we still have a long road and still need your prayers.  

I have a picture of her with all the tubes and wires, I wanted to document it for her, but have decided I don't think it should go on the blog.  It's just too graphic.  I'm happy to share with anyone who wants to see, don't be afraid to ask.  I've looked at it several times since we left the hospital, for some reason it makes me feel better.

I will keep everyone posted on progress.  They may be short updates, but I will try to keep them frequent.  

Tomorrow is the big day

Hope will have her repair tomorrow.  We have met all the players - cardiac surgeons, anesthesiologists, fellows, etc, signed the consents, and have all our ducks in a row.  The doctors and nurses have been nothing but encouraging, putting us at ease.  For them, this is routine and not a challenging surgery.  They are confident, and as in any surgery there are risks, but they are minimal.  There is a 5% chance of risk to life.  Pretty good odds.  And after seeing the way they cared for her over the weekend when there was a complication, I feel very confident that they will do everything they can to keep her safe.  

Snuggling in Vera Bradley with her blanket knitted by her great Aunt Gail

As scared and upset as I was over the weekend, I feel calm, relaxed, and ready to be on the other side, so that we can work on coming home for real.  Chris feels the same way.

Bonding with Daddy

She goes into surgery sometime early afternoon.  We will get to the hospital shortly after the morning rush and spend some time with her.  Once we hand her off, we'll have several hours to kill, so we'll head into Boston for lunch to kill some time.  Sometime mid to late afternoon, the surgeon will be out with the update.  We'll be allowed back about an hour later.

Our first trip outside!  Enjoying the Prouty Garden

We have been warned again and again that she won't look like our sweet baby.  I feel very prepared for this, but still imagine it will be hard.  She will likely be swollen, her chest may still be open, she'll be hooked to a bunch of machines, intubated, etc.  But she'll heal quick, and will hopefully be off machines in 48 hours (more if they have to leave her chest open).  They tell us 5-7 days in CICU and maybe another week (though I'm guessing more) on the inpatient transition floor.  I give us another 2-3 weeks until we're home.

Feeling the sun hit our face for the first time.  10 days old.

Once we're back on the transition floor, Hope will be happy to have (healthy) visitors as long as she is growing alright and feeling healthy. 

Hope meets the Bruins!

I will update everyone late tomorrow afternoon on how she did, but for now keep us in your thoughts and prayers.  

More snuggles with Daddy

I have an IV sticking out of my head, but I'm cool because it looks like a rose.  Can't wait till they put my central line in so I don't need to contend with IVs

Our little fighter

It's been 8 days.  In those 8 days, I've learned more than I did in the 9 months I was pregnant.

What I know for sure...

1) This kid is a fighter.  

We knew that from the moment we found out I was pregnant.  We had battled Infertility, been told we couldn't have a baby, and yet this little one wanted to make her way into the world.  

Then we found out about the heart condition.  Yet, she continued to thrive inside of me, and has defied many expectations in her one week in the world.  

2) She is loved.

In her one week, everyone who has cared for her has fallen in love.  She seems to have a spell she casts on people.  All it takes is one look into those deep, soulful eyes, and you're under the spell.  The nurses are crazy about her. Obviously, so are we.  The doctors comment on how good she is.  Her reputation precedes her.  Everyone who comes to check her out for something has been told how amazing she is.     

3) She is beautiful

There is not one thing about her that isn't perfection (other than her heart).  I can't believe how perfect she is.  She is going to grow into a beautiful, graceful little girl and eventually a wonderful young lady.

4) She is hope.

The name was chosen carefully, but it is personified in her spirit.  She is calm and wise.  The OB who delivered her even said "She is an old soul". You look in those eyes and you know everything will be fine.  

So about her health...

Immediately after birth, she was taken down to the NICU at Beth Israel to be prepared for transport to Children's.  Everyone in the room was thrilled with her color.  No hint of blue, entirely pink.  Things looked good.

Over at Children's, the news continued to be good.  They did an echo and there are only two pulmonary collatorals coming off the aorta, which is great.  There was a bit of tissue that they were worried could close up so she was put on prostaglandins to keep it open, with the plan that we might try to take her off and see how she did and if she might be able to go home.  That plan was followed and she did great.

Off the prostaglandins!

Sunday night, 48 hours off the prostaglandins, they did another echo and things looked great.  They started to talk about moving us to the transitional unit, the cardiac inpatient floor.  

By Monday, she had developed a little bit of jaundice, nothing out of the ordinary for a newborn.  So she went tanning.  

I got my shades on!

She did not approve!  Giving us the evil eye.

We were still talking about moving her, but the jaundice got worse and she had to go under the full lights.  Full on tanning!

Through all this time she was eating well and doing everything she had to do.  I was coming in each morning before rush hour to be with her.  On Tuesday, they had the big surgical meeting to discuss the current cases, and hers was on the agenda.  They agreed to try to push surgery off and send her home for a bit.  First she needed to get rid of the jaundice.

By Wednesday, the jaundice was gone and we were graduating!  By noon, we had moved out of CICU and into transition.  It looked good for coming home over the weekend!

How could you not love her?

Selfie!

All of her machines in CICU 

The outfit my nurse Jess dressed me up in for my graduation!

Over the last few days, we've been checking things off the list.  She did the car seat test, the hearing test, got some shots, etc.  All she needed was to kick the jaundice (or at least stabilize) and gain some weight.  

Everything was great.  We were unattached to any wires or IVs.  We went for walks around the floor, and even took a field trip to the cafeteria 

Where am I going?

Riding the elevator 

Yesterday, she turned one week old

Things continued to be great until yesterday afternoon.  They did another echo and noticed the artery starting to narrow just a tiny bit, nothing dangerous .  The plan would have to change.  Surgery is now a lot closer...probably early this week.  This is something we knew would happen eventually, so it wasn't a surprise, but we had gotten our hopes up to go home.  

Today has been even worse.  When I arrived this morning, the nurse told be she had had a bloody diaper.  They ran all kinds of tests and stopped feeding her.  The kid likes to eat, so she was not happy.  In the week she's been with us, she's never cried for more than 2 minutes.  Today she was inconsolable for a good 15-20.  The reason for the blood is that she might not be getting enough blood flow to her intestines and may have developed a small infection.  Our doctor tells us it is probably minor, but I just wanted everything to keep going perfectly.  Our doctor also says this is just another reason to go forward with surgery.   As most of this was going on, I was alone since I wanted Chris to go back to Krav Maga.  For the first time in this process, I could no longer be strong, and wept in front of the doctors. 

So right now, we're in limbo.  She is stable and doing well.  She's not uncomfortable or really even sick, just hungry.  She's slept most of the day.  Surgery will be sometime this week.

How am I handling surgery?  The prognosis is great, the surgeons are confident, but I'm kind of a wreck, actually.  I'm struggling with severe separation anxiety, feeling the postpartum blues, and scared as hell about surgery.  I know we have the best doctors in the US, if not the world preparing to operate on her, but my mind, in its fragile state, can't help but go down the wrong path.  I can't imagine how I would feel if something happened to her.  We are so in love with her.  I just want to hold her and never let her go.

On top of it all, I'm not recovering well.  Even though I feel great, my BP is sky high and I've been put on meds. No wonder my BP is high.  This may be the most stress I've ever been under.  I've had several melt downs.  Today has been the hardest.  Chris encouraged me to get out if the room (we are sharing it and have the hallway side, so no window.  I decided to come outside to the Prouty Garden and write this blog while getting some fresh air and sunshine.

Chris, as always, is my rock.  Calm under pressure.  Matter of fact and reassuring.  But I know he's probably a little scared too.  

So for now...

Please keep Hope in you thoughts and prayers.  This is where we need all those prayers that got us through pregnancy the most.  We will continue to update, though they may be brief.  

Hope's birth story

It certainly has been an amazing first week.   I am so filled with joy and grateful for everything we have.  Sometimes patience really does pay off.  For us it has in a big way.

We left our house Thursday morning at 7:20AM.  I went home on Sunday but have spent the week more or less living at Children's and so much has changed.  Most of you who read my blog already know Hope Lorraine Crellin arrived at 2:47 Friday morning, but I wanted to share her story.

Our ride to the hospital on Thursday was anything but smooth.  There's nothing quite like trying to get to Longwood Medical area at rush hour.  We got there 20 minutes late and then had to wait in the waiting room for almost an hour.  Talk about nerve wracking.  

We were ushered back to a labor delivery room.  Both Chris and I were hoping that they'd give me the medicine to induce me and then send us off to have breakfast or lunch, as so many had told us was the case with their induction.  It was clear as soon as we got there that that was not what was to happen.  I was told to put on the Johnny and was put on a fetal heartrate monitor and a contraction monitor.   I was cuffed to check my blood pressure and it was even higher than it had been.  They were concerned about it and were talking about treating it.  Fortunately it didn't get any higher.  So from then on, I was pretty much chained to the machine.   That was the first of many things that were not in my birth plan.  I wanted to be able to move around freely, but between the baby's heart and my blood pressure, there was no chance of that.    

Around 11, they checked me to see if I was dialated.  I was 1 cm and my body had made progress since Tuesday.  They gave me misoprostal to soften my cervix and get the process started.  The plan was to check me again around 3 or 4 and see if I had made progress and probably give me more drugs.  Then if nothing happened, they'd break my water.  We hung out in the room, ordered some lunch and just chilled out.  I filled out the baby book, wrote some thank you notes, and waited for things to happen.  Around 2:30, I got up to use the bathroom and when I was done, and went to come back out, I felt a dribble down my leg.  My water had broken on its own with no more meds!   The process was moving.  After that, I started having contractions.   The nurse came in and told me I looked "labory".   The contractions started, then picked up sometime after dinner.  I was getting through them ok until about 9:30-10.  By then they had become unbearable, especially because I was on a leash and couldn't go too far from the monitor.  I hadn't been checked and I was way too uncomfortable for them to check me, so I had no way of knowing how much longer it would go on.  All i wanted to do was rest and take a nap, I but couldn't sit still, it was so painful.  I gave in and decided I needed assistance and took an epidural.  Getting the epidural was a challenge as I was fighting painful contractions, one on top of the other.   Once it was in, I got immediate relief.  I was now confined to the bed, couldn't eat, but at least I was comfortable.  None of this was in the birth plan, but I knew I had made the right decision for me and the baby.  I was pretty sure if I didn't get assistance, I wouldn't have the energy by the time I needed to push. The nurse, Julie, checked me, and I was now 6cm.   By then it was 11 and I was able to take a nap and rest while waiting for it to be time to push. The nurse told me that if I had pressure in my backside to let her know, because it would be likely it would be almost time.  Around 1, I felt it.  The nurse came in, checked me, I was 8cm.  She told me we'd start to push in a half hour unless I felt like I needed to sooner.  She went off to notify the doctor and NICU, who would then notify Children's.  At 1:30, she came back with a resident, they gave me instructions, and it was go time.  I found pushing much more rewarding than labor because I was doing something and the end was in sight.  I pushed for about an hour and was making great progress.  She called the doctor and NICU and the party was on.  There were 10 extra people in the room, all waiting for our baby to come into the world.  17 minutes later, she crowned.  As I pushed, Dr Achilles looked at the monitor turned to his resident and said we're go to make a small incision.  This was the last thing that was not on my birth plan, an episiotomy.  But baby's heart rate had gone up and Dr Achilles wanted her out on this final push.  And with one snip, Hope came into this world.  

Hope's first few minutes

The first remark from everyone was that she was pink!  This was good news.  If she was struggling, she was going to be blue.  But she was not even a little blue.  They cleaned her up a little, wrapped her, and handed her to me.  I got to hold her for about 2 minutes and then she was whisked away to the NICU.  

Happy family

Chris went with her, while they stitched me up.  They brought her back to see me before they transported her, but she was all boxed up for transport.  Eventually, around 4:30, I got wheeled down to the recovery floor.  It was so good to get out of that room.  I had been chained up in there for 18 hours. I was looking forward to sleep, though that never really came.  I decided I should pump before sleeping, then shortly after I closed my eyes, the floor doctor came in to check me.  Then I woke up in pain.  I paged the nurse, and she helped me use the bathroom and get settled back in bed. I tried to sleep a little more, decided I should pump, asked the nurse to help me with that, and then ordered food and took a shower.  

Such a sweet face

By afternoon, I was feeling good enough to get over to Children's to see her, though it was draining.  Meanwhile, all this time, Chris never slept.  He was with Hope from the time she was born until lunch on Friday.  I spent the weekend at Beth Israel, but mostly running back and forth between there and Childrens.

Proud Daddy

That is the story of her birth, I am going to write a separate entry with an update on her health later.  It is lengthy and I don't have much time, but for now, know that she is doing well.  She is still at children's and has had nothing but good days, except for a small glitch 

yesterday. 

Our little eggplant sleeping so peacefully 

Day 1 in CICU

Love this little peanut already

Daddy's girl

Pregnancy and Infant Loss Awareness Day

Today is Pregnancy and Infant Loss Awareness Day.  At 7PM, I lit a candle in honor of all the babies who never made it to the world or who left it too soon.  Too many family experience this heartache and it weighs particularly heavily on me this year.  

Even on the eve of being induced, I have thought about the angel we lost two years ago often today.  He would have been 20 months old.  He'd be walking and talking.  But we never got to meet him, instead he went to heaven in order to look out for his little sister.  I know he is up here looking out for us tomorrow.  

I think of my cousin and her family and their "Baby K".  I think of many friends who have lost babies.  And I think of all of those in the infertility community who have not only struggled to get pregnant, but then on top of it, have experienced loss.  My heart goes out to all of you.

I am so grateful to have carried this little baby girl to term, and we are so excited to meet her, but tonight, I anticipate it with a little bit heavier heart.  

If you know someone who has suffered the loss of a baby, please reach out to them and show you care.  You can find resources at October15.com

I'd like to leave you with a poem my cousin posted earlier:

“A Pair of Shoes”
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Back on the rollercoaster

This pregnancy has been mostly smooth sailing.  For the most part, I have loved every minute of it, even the rough spots.  The journey to get here was a rollercoaster ride, and at times, this pregnancy has been too.  But magical nonetheless. 

The last couple of weeks have been busy prepping for baby.  Two weeks ago Chris' mom threw me a wonderful shower, with the help of his cousins, his aunts, and some of our friends.  It was a lovely afternoon, with great food and wonderful company.  Baby girl received some lovely gifts.  I will post pictures from this and my NJ shower later.  I'm still in the process of uploading these photos.

In the last week, I have been prepping my replacement at work.  We are fortunate enough this year to have a very competent student teacher, so she is going to take over for me and teach my classes.  She is going to be great.  I've been working with her to get her ready and I think the transition will be seamless. 

We've been busy getting the nursery set up.  I'm happy to say it is mostly done.  There is nothing on the walls, but it still looks really great and I'm really happy with how it turned out.   I am most proud of the fan that Chris and I installed ourselves.  It has a remote that has a dimmer feature, and I really like how it looks. 

Both cars have car seat bases installed.  The clothes are washed.  Chris and I tag-teamed Market Basket on Saturday to stock up on supplies, so that we don't need to go out for a month if we don't want to.  I spent this past Saturday preparing freezer meals.  I also made beef stew and chili to can.  Sunday we cleaned the house from top to bottom.  To say I hit the nesting phase is an understatement. 

Since we both had the day off for Columbus Day yesterday, we booked a tour at Children's to see the Cardiac Intensive Care Unit.  The reality of everything really hit me in there, as we looked on at a one week old baby who had just recently come out of open heart surgery.  She was perfect, but hooked up to so many machines and looked so small.  But the level of confidence and professionalism displayed by the nurses and doctors we observed there was awe-inspiring.  And the technology!  Every patient has its own room, and each room has all the equipment needed to perform all the tests needed as well as small procedures.   The CICU cares for patients from newborns up to adults.  Each patient is assigned its own nurse and they try to keep the rotation such that there is consistency in who is caring for the patient.  They offer pumps and pumping supplies.  They also give nursing mothers vouchers for three meals a day in the cafeteria.  But I have to admit - it was hard to look on at that little baby.  I am sure it will be even harder when it is our own child, however, we will know more about what is going on with her once she is through surgery than we do now, which in many ways will make it easier for us to cope with her condition. 

And how is little miss, you may ask?  Our last few appointments, she has flown through with flying colors.  We have had a biophysical exam at each ultrasound - this checks to make sure she is practicing breathing, her heart is pumping, her kidneys are functioning, her bladder is full and that my amniotic fluid levels look good.  Each time, she has shown them each of those things, no problem.  Last week we had a non-stress test, which involves them strapping on two monitors - one to measure her heart rate, one to measure for contractions.  She spent the 30 minutes it was on my belly kicking like crazy. 

So back to the rollercoaster.  It wouldn't be us if it were entirely easy.  Fortunately, it has nothing to do with baby girl's health, but instead mine.  At my last appointment, the doctor noticed that my blood pressure was up.  That along with a couple of other red flags - I had a huge weight gain (9lbs in two weeks), my feet were swollen and the blood pressure - made them suspicious that I may be brewing pre-eclampsia.  I was sent home with a jug to collect my urine for the next 24 hours, to test for protein.  My doctor told me if it came back positive I would be admitted and kept until 37 weeks.  Fortunately, it was negative, so I was able to go stay home and go back to work.  Unfortunately, he also warned me that if it didn't go down by my next appointment, they would be inducing at 37 weeks.  Well, today was that appointment and it did not go down.  I did lose a few lbs, so there was that at least, but on the other hand there was a little protein in my urine, so they are now definitely worried about pre-eclampsia.

And here's the kicker - they've decided to induce me at 37 weeks.  So I am booked for induction on Thursday.  Looks like this November baby is going to be born in October.  Tomorrow is my last day at work. 

How am I feeling?  A little bit of everything.  My emotions have been all over the place, ranging from sad to see pregnancy end, to scared (mostly of being induced, not of labor), to excited to meet her, to annoyed that it didn't go the way I want, to stressed about getting everything done.  I know not many women say this, but I am not ready to be done being pregnant.  Like I said - I have loved every minute of pregnancy.  Having waited so long for it, and worked so hard for it, I always promised myself I would love it if it ever happened.  And I did.  In some ways, I feel jipped out of three special weeks.  I have loved watching my body change and grow.  I have been lucky to gain the weight mostly in my belly and feel like I have carried really well.  Other than the 9lb jump last week, my weight gain has been slow and steady.  I don't have any stretch marks.  Because my weight gain has been so level, it has only been in the last month that strangers have commented on my belly, and I'm going to miss my belly.  I'm going to miss feeling her kick and being inside of me.  I hope I get to experience it again.  I've only recently started to feel uncomfortable.  On the positive side, we'll finally be able to hold her and interact with her.    

I will continue to update over the next few days.  I'm guessing there will be a fair amount of down time while we wait for labor to progress....so stay posted.  As I leave you tonight, I am leaving you with my 34 week, my 35 week, and my 36 week bump pictures. 

34 weeks - Apple picking at Shelburne Farms

35 weeks - Apple picking with my SRR girlfriends at Nashoba Valley

36 weeks exactly - I love this dress.