Gratitude, big news, and #GivingTuesday

She was six weeks old on Friday!

We had a lot to be thankful for this Thanksgiving and it was so fitting that Hope got to come home two days before such a significant holiday. We have been home a week now and are slowly settling into a routine.  We have been having fun showing Hope the world around her.  She has had a lot of firsts in this first week home:

- her first car ride

- her first time leaving the city of Boston

- her first walk in a stroller

- her first time sleeping in the peace and quiet of her own nursery, with no middle of the night interruptions for vital checks
- her first time leaving the state
- her first time meeting Chris' family

- her first time out at a restaurant

- her first SRR board meeting
- her first trip to a bar (the Burren)

There will be so many more firsts to come.  She has been enjoying interacting with us.  We let her do some modified tummy time (she can't do normal tummy time because of her surgery) - the jury is still out on whether she likes it or not.  We also had her playing on her activity mat.  Her favorite toys are still her wubbanub and more recently her monkey, a gift from one of Chris' fraternity brothers.  Its almost as big as she is, but when she sees it she smiles at it and stares at it.  These are the beginnings of real social smiles.

Thanksgiving itself was fun, once we got where we were going.  I started the morning by volunteering at my running club's Thanksgiving day race.  I came home and showered and as we were changing Hope, getting ready to go, Chris noticed that her incision looked a little red and irritated.  We had to decide what to do.  Chris wanted to call the pediatrician, I thought we should go straight to her cardiologist.  When we left he hospital last week, he told me to email him for anything we needed, especially on Thanksgiving, as he was working.  So that is what we decided to do.  Fortunately, he got back to us immediately and prescribed some antibiotics with the instructions to use them if it started to look worse.  By the time we had our email exchange with him and waited for the prescription to be filled, we were two hours late, but being that we both thought we were going to end up at the emergency room at Children's, two hours late wasn't that big of a deal.  We had a nice time with Chris' family and had fun showing Hope off.  By the time we got home, it was clear the incision looked worse, so we started the antibiotic.  I'm happy to say it started looking better a couple of days later.

Thanksgiving is a time of gratitude, and I had every intention of writing a post on gratitude last week, but the mountains of laundry caught up with me.  Like I said at the beginning, we have so much to be grateful for this year.  Here's a list of the things / people I am most grateful for:
1) bringing home a healthy baby in time for the holidays.  Things could have been a lot worse
2) my husband and the father of my child.  Chris is my rock and I can't imagine having had to go through this without him or with anyone else.  When I was on the verge of breakdown, he comforted me. He makes me laugh when I feel like I should cry.  I am so happy we chose to live this life together and I feel so complete now that we have this beautiful little family.
3) the nurses in the CICU and in the transition unit, in particular - Stephanie, the CICU nurse who cared for her for much of her time in the CICU, in particular when she was at her sickest.  Steve - her night nurse over the weekend, who had also been our nurse before surgery.  He let me sleep and took care of the night feedings when I was staying at the hospital, giving me some much needed rest.  Karan, the nurse who pulled the feeding tube, Lauren, who suggested we take Hope off of the supplemented, high calorie milk and go back to regular breastmilk, Katie, our nurse early on, who showed such great love for Hope, and the list goes on.  These nurses were the front lines, especially in the ICU.
4) Hope's doctors:
Dr Ralston - the OB who noticed the defect and referred us to Children's.  He also took over my care when I transferred to Beth Israel and it was him and his team who noticed the Preeclampsia and decided to induce me early.
Dr Friedman - Hope's cardiologist.  He made the diagnosis.  While she was in the hospital, he made it a point to check in with us daily.  He will be her cardiologist for as long as he is at Children's and I feel really fortunate to know that this will be a lifelong relationship.
Dr Pigula - the surgeon that ultimately saved Hope's life.
Dr McKeen - Hope's pediatrician.  She is amazing.  She kept up with Hope's progress in the hospital before she was even officially her patient.  We've already been in to see her twice and she has spent close to an hour with us each time.  She has called me just to check in.  These little gestures go a long way.
5) The fact that we live in Boston and didn't have to travel to receive top notch care.  We're so lucky to have Children's in our back yard.  It made a difficult situation so much easier.
6) Our family.  We feel so loved from your messages, packages, visits, caring for Sanders, etc 
6) The support we have received from all of you.  We have heard from so many people we have been out of touch with.  Friends have delivered food, balloons, smiles, hugs, wine.   We are so touched by all of the support from everyone.   We can't begin to thank everyone

So what is the big news?  On April 20, 2015, I will run for Children's hospital on the Miles for Miracles team.  I do not need to be on a charity team - I have my own number that I earned at Philly a year ago, but I see it as the perfect way to honor the doctors and nurses that saved Hope's life.  It is the perfect way to show my gratitude.  I couldn't imagine running Boston this year wearing anything other than a Children's singlet. And today, #GivingTuesday, seems to be the perfect time to announce this news.   So for those of you who want to know what you can do, give to Children's in Hope's honor.  In doing so, you will help ensure that other sick children get to go home to their families like Hope did.  You would be supporting research to help kids with rare disorders and to improve the procedures and treatments already in place.  You may even help fund research that could help Hope in the future - we hope that someday when it is time to replace her conduit, we will be able to replace it with one made of living tissue, that will grow with her.  Come out and cheer for me on Marathon Monday and support me in my effort to help other families.  

To donate, please visit my page:

Http://fundraise.childrenshospital.org/goto/MollyCrellin 

Finally time to see the world

Parking                    ...$350

Room & board         ...$46,000

Medical care            ...$284,000

Bringing Hope home....priceless 

Today is the day I have waited for for the last 4 years - the day we finally get to bring our baby home and start our life as a family of 4 (can't forget Sanders!)

I knew over the weekend that today was likely our homecoming day and yesterday it was confirmed, as long as she gained weight overnight, but I didn't want to say it out loud for fear it wouldn't happen.  I have met so many disappointments on this long road, that I didn't want to get myself excited only to be disappointed.  I woke up this morning to the staff here weighing my sweet girl.  I was almost afraid to ask, but when I did, I learned she had gained 2g!  There is nothing keeping us here now and as I write this, I'm sitting in our room, looking out over Longwood medical area, BU, and cambridge, waiting for our discharge papers.  

Yesterday and today have been a parade of visitors, prepping us for discharge.   Genetics, nurses, Nutrition, feeding, doctors, Case Workers, etc.  

We are so excited to finally have her home and can't wait to keep everyone updated on her progress.  We really can't wait for everyone to meet her.  For now, what I'm really excited for is to not leave my house tomorrow.  

Happy Thanksgiving everyone!  

Hospital life

Today is day 39 at Children's.  Hope has still never left Children's, other than the brief trip across the street in an ambulance in the middle of the night.  She has never been out of the city of Boston and Chris and I haven't been outside of 128 since she was born.  

Looking at her magical frog

Other than the 10 days where Hope was completely sedated, I have averaged 10+ hour days.   The hospital is kind of a time warp.  Most days are the same but they're amazingly busy, especially since we've left the CICU.  I have stayed overnight 5 out of 7 of the past nights in effort to get little miss to eat, but before I was doing that, I was getting in around 10, and staying until 7.  Now that the dog is home it is slightly more complicated and I need to go home in the middle of the day.  

The last few days we have settled into a routine.  A typical day starts with checking in with the nurse.  Before I was staying, the nurse would give me the update on Hope's night, now that I've been staying, I've been telling the day nurse how things went.  After checking in, Hope eats breakfast around 7AM.  This takes about 30-45 minutes, then

I order breakfast and pump.  After that, there is often something on the schedule, though her primary job right now is to eat. Labs usually happen in the morning.  Hope has tiny veins, so this usually takes a while, but she never screams. Even when she is poked in her head.  Nothing more than a wimper.  If she needs X-rays or other diagnostics, these often happen in the morning.  Sometime late morning, the Nurse Practitioner stops by to give the report from rounds.  Then Hope eats second breakfast.  I pump when she's done, then I go to lunch after that and wait around for the 2:00 feed, then i run home after pumping to walk the dog and get the car.  Chris comes while I'm gone, so that he takes care of the 5:00 feed.  I come back in and Chris goes home.  We continue on the three hour schedule overnight, so I am basically sleeping in two hour increments. Basically, the day is feed Hope, pump, eat, then do it all again.  I'll be happy when we're home and I don't have to pump every three hours, since I can replace some pump sessions with nursing.    

Hanging out in our new room

The days are long, but go by quick.  It has become a blur.  We've met so many people and I have started to forget who cares for us when.  Since every day is the same, I only really remember really good data and really bad days.  I haven't had a lot of time to write, so I can't even remember it that way. 

All stretched out

Last week was a struggle.  My last post, I talked about the light at the end of the tunnel.  Well, that is one LONG tunnel.  Our number one challenge has been getting this kid to eat.  We have met several road blocks, the biggest being reflux and getting her to take in a certain volume.  We had been feeding her breastmilk fortified with formula, but we had a hunch that it wasn't agreeing with her.  We convinced the team to let us try straight breastmilk and see how she did. Lo and behold, her volumes increased and we were eventually able to remove the feeding tube yesterday.  This was a huge deal as it was a long, frustrating process.  She is no longer hooked up to any sort of machine other than the monitors they use when we're not in the room or during the night.  

No more feeding tube!  We now have the wireless version.  

Another struggle was our room situation. When we moved out of CICU, we went from a beautiful spacious single with one nurse assigned just to us, to a small double room on the hallway side and a nurse who was also caring for two other patients.  There was little room to move around, especially with two chairs and a crib.  The bathroom was on the other side of the room, our roommates side.  We were in that room for a week.  I was never happy with our room, but kept telling myself we wouldn't be there long. I don't like to complain or be a pain, so I never said anything.  We watched 5 different families come and go.  Our last roommate was the hardest of all.  The baby was not a good match age-wise for Hope.  He was probably a year and a half and was not feeling well. He screamed from the time they brought him in.  When they came in, they managed to pull one of our curtains over to their side.  This meant we didn't have enough curtains to close us off.  I had to pump / nurse, but was exposed.  There was nowhere for me to go and I lost it and melted down.  Later that night, we moved over to the new wing, and were given a nice, private room.  This room is actually larger than our double.  It is a single, has a gorgeous TV, and a private bath. There is enough room to have visitors and it is more like a hotel room than a hospital room.  I have felt much better since we moved here.  

Login' the boppy!

The last piece of the puzzle now is for miss Hope to gain weight.  Then she can come home, which will be soon!  Will keep you all posted!

Hope turned 1 month old last Monday!  She also had her staples removed.  

The light at the end of the tunnel

Getting ready for my CICU graduation!  I was all dressed up when she got there.

As I sit gratefully in our non-CICU room snuggling with my sweet baby, the proverbial light at the end of the tunnel is starting to shine brighter and brighter.  We are not currently attached to any machines, and there is only one feeding tube still attached to her body, the only tube keeping us here at Children's.  We're almost home.

We have had a busy week and I apologize for not updating everybody sooner.  

Lounging in the CICU on Wednesday, 14 days post-op.  Still pretty drugged up.

The biggest change is that we have officially graduated from the Cardiac ICU, and hopefully we will not go back there for a while and that our next visit there is brief.  We were there for 14 full days.  We expected to be there 5-7.  As everyone told us, this was a huge surgery for a very tiny baby.  Had she been much smaller, they may not have been able to do this surgery and would have had to do something more temporary, or we would have had to stay in the hospital while she grew bigger.  Thursday was the big day.  The big requirements for leaving CICU were to get off of morphine and off the cpap.  Her morphine was weaned last weekend and she got off the cpap Tuesday night.  She was ready to move on Wednesday, but the attending doctor, who is very conservative, wanted to observe her one more day.  Tuesday, there was a slight scare that she may have been withdrawing from the sedatives, but fortunately that was not the case.  

13 days post-op

We started to try to feed her with a bottle on Wednesday, but because her recovery is so slow, we are also feeding her through the NG tube.  They have slowly been increasing the calories to get some weight back on her.  Thursday was her graduation day and she got all dressed up.  

All dressed up.  15 days post-op and moving out of CICU

Hanging out with mommy waiting to move out of CICU

All my supplies (look at all that milk mommy made for me!) and my chariot that will take me out of CICU

Since we moved, we've been settling into the routine here.  Life is very different in transition.  The CICU nurses have total control over what happens with her care, and we have input, but ultimately everything that happens is their decision. They even have more say than the drs in many cases.  Over here, we are much more in control.  We change diapers, we call for bottles, we can take her for walks and field trips.  

17 days post-op.  Just after trying to eat.

The big task while we are here is to get Hope to start eating.  This has been a slow and somewhat frustrating task.  Because she was so young and the surgery was so big, she sort of forgot how to eat.  In addition, because she went 10 days without food and then didn't get much when she started to get fed again, she had lost a lot of weight and had no energy.  Lastly, she was on heavy-duty sedatives which made her very sleepy.  The sedatives have finally been lifted - she took her last dose of attavan on Thursday and her last dose of methadone last night.  She is starting to put weight back on.  The last piece of the puzzle, getting the coordination of the suck/swallow routine down, seems to be coming in to place.  

Today was a very good day.  The sedatives that were making her so sleepy are starting to really wear off, so she is now awake and alert far more often.  I got in just in time for her 8AM feeding.  She was wide awake and looking very alert.  She took about 7mLs, which doesn't sound like much, but she was showing interest and got a few good suck-swallows in, so I was encouraged.  She feeds every three  hours, so we hung out for a bit, I had some breakfast, then pumped.  While I was pumping, I gave her some skin-to-skin time, then decided to try nursing.  She did pretty well for not having nursed in three weeks.  She latched and suckled a little bit.  During the 11:00 feed, the feeing team came in to help her feed.  She showed a lot of interest, but was pretty tired from nursing, so only took 4mLs.  Again, there were some good suck-swallows, so we were encouraged.

Selfie with Mommy as she lets me snuggle skin-to-skin under a blanket 

I went home to get Chris after the 11:00 feed, and to walk Sanders.  Chris drove back in and I ran in.  This was the longest run I've done in probably 6 months.  I managed 7 miles and the pace was even decent - 9:20s.  Starting to really feel like myself.  

But the best part of the day was the 2:00 feeding.  Her uncle Rob came to visit and she decided to show off and take almost a whole bottle, 31mLs!  

Hanging out with Uncle Rob after eating almost a whole bottle

At 5, I nursed her a little bit, and then she once again took 30+ mLs.  We feel like she might be finally getting it down!

We are happy to accept visitors at this point, and can't wait for everyone to meet Hope.  If you visit, we ask you to keep visits to around an hour at most - I get tired and overwhelmed, but I am really happy to see people.  She had her first post surgery visitor on Friday.  We went on a lunch date to the cafeteria with my friend Carrie-Anne.

Field trip to the cafe!

With every feeding, she's getting closer and closer to home.  I'd like to think we'll be home Tuesday or Wednesday, but definitely by the end of the week.  We will keep you posted - hopefully this is a big week!

Sanders hanging out with me in the Nursery.  Waiting for Hope to come home.

Slow and steady (lots of pictures!)

Little Miss Hope has been slow and steady with her progress, but it's progress nonetheless.  If there is one thing we have learned about our daughter in the last three weeks, it's that she does thing on her own timeline. After all, it took her four years to get here in the first place.  We are slowly getting our little girl back.

Holding Mommy and Daddy's hands this afternoon

Since I last updated on Thursday morning, a few things have happened.  She is waking up more and more.  Each day since she was closed up, she has been a little more awake.  She is slowly being weaned off all the meds she was on, tubes and wires are being removed, and she is starting to look more and more like the baby we handed over 10 days ago.  

Thursday afternoon.  Chest tubes still in, but starting to look more like myself.  

First off, meds.  At one point, she had 18 different medications going in through IVs and her arterial line.   She was on 4 different meds for her heart, diuretics to help with the swelling, morphine for pain management and sedation, paralytics to keep her still, lipids and sugar water to feed her, etc.  Today, she was down to 6.  She is on atavan/methadone to wean her from the morphine so she won't suffer withdrawal, milrinone for her heart, lasix (diuretics), lipids, and a few other things.  Much of the medication she is getting is a matter of weaning her off the huge amounts she was on.  We are being told the arterial line will come out late tomorrow when she is weaned off of milrinone (a heart medication).  

These are all the machines surrounding her.  Each room in the CICU is equipped with most of these machines.  

Tubes.  She had one chest tube removed on Wednesday and the other two were removed on Friday.  These tubes were there for drainage and were pretty ugly.  She looks much prettier without them.  She still has some wires coming out of her chest and some electrode monitors.  The wires are there in case her heart needs regulating with a pacemaker, which is unlikely.  These are some of the last things to come out, for precautions sake.  

Friday and we're chest tube free!

Breathing.  I'm happy to report that she was taken off the ventilator yesterday. This was a huge step and takes us another step closer to getting out of the CICU.  She is still on breathing assistance, but it's just a cpap through a nasal cannula.  She is no longer intubated.  Chris and I watched them extubate her.   I found it tense, as if everyone held their breath while we waited to see if she could do it.  She pulled it off and is doing pretty well, but does need support.   She may be on the cpap a few days, and we can't get out of CICU until she is done with it.  First she needs to get her strength up and start breathing deeper on her own.  Another big thing that came with the removal of the breathing tube was moving her out of the isolette (the glass bassinet) and into a big girl crib.  

Breathing on my own and not so sure about it.  

Wide awake and looking more like myself, even if I am a little skinny.

All tuckered out but holding daddy's hand

Feeding.  They began feeding her breastmilk through a nasal-gastric tube (NG tube) on Wed morning.  They started with 2ml an hour and over the last few days have slowly worked up to 5. We stalled at 5 for a couple of days to make sure her gut could handle it and we didn't slide backwards into another episode of possible NEC (the bowel infection she had before surgery).  Today, they were upping it to 8, and by the end of the day tomorrow she should be getting 12.  This is getting close to the amount she was eating before the fast, when she was eating 40 every 3 hours.  After increasing it to 12, they will start adding calories.  Sometime in the next few days, she will get to try out a bottle again, though it is unclear when.  Today she was sucking on her wubbanub (the pacifier with a stuffed animal attached to it). She is incredibly weak, both from the surgery and from not eating for two weeks.  She has lost a bunch of weight and is down to 5lbs 3oz.  Her arms are so skinny and her eyes look so big in her head.  Can't wait until she gets a little meat on her bones.  Today we took some pictures so that we could remember just how small she was.

My hand in Mommy's

My hand in Daddy's

My wrists are so small, Daddy's wedding ring would fit on it

The best part, other than getting off the ventilator, is that we are now able to hold her again. It is complicated (given the number of IVs, the Cpap, etc) and the nurse has to hand her to us, but it is nice to have her in our arms again.  It was pretty clear that she was pretty content to snuggle again too.  

Snuggling with Mommy

Snuggling with Daddy

So cozy and happy to snuggle

We are starting to make the motions to prepare for her homecoming, even if it is still or week or so away.  Sanders came home today.  I am so thrilled to have him home!!!  Our house doesn't feel so empty anymore.  He is pretty happy too.  I took the morning off from the hospital today to hang out with him.  We went for a run and for a minute, it seemed like our old life.  

I think we can officially say we are out of the woods.  The next step is out of CICU into the transition unit, then home.  She needs to start breathing better for the first step to happen.  Her nurse suspects Wednesday, but definitely by the end of the week.  The other thing she needs to do is start eating from a bottle again.  We think she'll pick this back up quickly - she was eating so well pre surgery and has already shown us she can suck on a pacifier.  I don't think they'll let us go home until she gains a little weight, showing she can indeed eat.  

So that is the update. I feel a levity I haven't felt in months.  My body is starting to feel like itself again, my dog is back, Hope's heart is repaired.  Life is pretty good, but will get even better once she comes home.  After this ride, I'm thinking having a newborn at home (even if she is actually a one month old) will be much easier than what we've been through.  Instead of getting up to pump, I will get up to nurse / feed my baby.  We won't have to commute into Boston every day.  We will be able to snuggle our baby whenever we want.  I look forward to diaper changes, a screaming baby, and midnight feeds because it simply means that life is normal and our baby is finally healthy.  We can't wait to introduce her to all of our friends and family, and we will be sure to let everyone know when we are welcoming visitors.  We thank each and every one of you for the outpouring of support.  All of your prayers, messages, outreach, etc has been so wonderful.  I am very behind on responding to people, so I am sorry if you wrote me a message and I haven't responded - I promise I will get back to you soon.  We want everyone to know how loved we feel.  This is one loved little girl :)