Recovery is a long process

Playing in the toy room

If I know anything from my experiences as a heart mom and a runner, it's that recovery is a long process.  It starts when you become less critical and are discharged to the floor from the CICU, but doesn't really pick up until you get home.

Sleeping peacefully in our new room

I was pretty surprised we were discharged to the floor the Monday after surgery.  I really thought we'd be in the CICU one more day.  Reya was so weak and seemed so fragile.  She was a shell of herself and almost unrecognizable.  But she no longer needed the one on one care the CICU provides.  We would be with her 24/7 and could perform much of what she needed ourselves.   We got a decent room - a large shared room, on the window side.

Watching "beast"

When we came out of CICU, Reya looked really bad, as I stated in my previous post.     She was down two pounds.  You could see every bone in her body, especially her shoulder blades.  She had dark circles under her eyes.  She was weak and could barely sit up for 30 seconds, and definitely couldn't stand.  She seemed so fragile, I was afraid to hold her.  On Thursday, a nurse practitioner walked in that I had never met.  Susan.  I really grew to like her.  She treated me like a peer with respect for the knowledge I had on my child.  She looked at Reya and said something like "She does not look very good at all" and asked me to see a photo of her well.  I showed her a picture from the night before surgery and she gasped and her eyes welled up.  Dr Friedman had also stated how bad she looked earlier in the week.

Still really skinny, but a little more color in her face and less darkness under her eyes

The one thing we were most worried about was her vocal cord.  She had been listed as NPO, meaning we were not allowed to feed her by mouth.  She was to receive all feeds by gtube.  This was really hard because we had hit her really hard with diuretics to get all the fluid off of her, especially what was in her lungs.  She was all dried out and so thirsty, begging for a drink.  We learned we could not drink in front of her because when we told her she could not have our drinks she dissolved.  Some of the first words she said when she could finally speak again on day 6, were "cup", "milk", etc.   Having her vocal cords scoped was the first thing we asked about when we got to the floor.  The Nurse Practioner that day rubbed us the wrong way when she shot it down immediately, not taking our expertise in our daughter into account, which is unusual at BCH.  She told us it was a matter of wait and see and the scope was not necessary, but as we saw it, it would give us answers and help us make a plan to proceed.  The next day, Tuesday, we were able to convince the NP on duty to ask Dr Baird, her surgeon, if we could do a scope.  Dr Friedman, her cardiologist was on board.   Dr Baird came by on Wednesday afternoon to check on her.  We discussed the vocal cord and he was positive she'd be a candidate for the vocal cord medialization injection and that we should definitely have her scoped so that we could move forward.  This was exciting news!  Finally, we were able to get a scope Thursday.  We had been asking for a week.   The scope confirmed our fears and more.  Both cords were compromised.  One was fully paralyzed, the other was not fully functional.  Her epiglottis was also not fully closing.  All of these things were problematic, and made her not a candidate for the injection, at least for now.  That was a real bummer.   

Watching "Beast" again

Our stay on 8 East was mostly productive.  It helped a lot that we had the same nurse for three days. Day time is when most things happen, and when you have the same nurse, is it even easier to be productive, as you don't have to repeat yourself when the nurse comes in the next day.   Kayla was our nurse Tuesday, Wednesday, and Thursday.  She was one of our very first nurses when Hope came to the floor many moons ago.  She was training when we had her with Hope, but we liked her then too.  Reya was not as wary of her as she was of a lot of people who came in the room, as she had grown familiar with her and trusted her, at least minimally.  For two of the nights, we had the same nurse as well, Katie.  She was pretty good and possessed ninja skills, important for a night nurse.  Then we had another Katie who was also good. 

Sleeping warrior

Looking so grown up after all she's been through

Motoring

Playing in our room

Shopping

The question always is whether you're safe to go home.  This is not something the doctors and nurses always get right either.  Sometimes you get sent home, only to bounce back a day or two later.  We experienced that when Reya was a newborn. There were moments when I thought we were going to be there forever this admission.  It took her 8 days to come off of oxygen completely.  She was weak and her sats were lower than I expected them to be.  I was feeling pretty certain we would still be there on marathon Monday.  Both Chris and I were targeting Tuesday, April 17 as discharge day.  But everything can change in a minute.   On Thursday, a couple of things happened that made me think we might be getting out of there sooner rather than later.  We have been around the block enough times that you can sense when discharge is near, even when it doesn't seem your child is well enough to go home.  First, the NP, Susan, asked me what we were thinking in terms of discharge.  It caught me off guard that she was asking my opinion on this matter since I am not a medical professional, but again, we have a lot of experience, and we know our daughter well.  I told her it really depended on ORL and what they saw in the scope.  I knew that if she were a candidate for the injection, it would be easiest to wait it out and have it done during this admission.  We would be prioritized and wouldn't have to deal with insurance approval.  Dr Baird wanted it done ASAP if she were a candidate.  I said if she were not a candidate, I thought home was the best option because with each day that passed, Reya was more and more miserable and more and more depressed.  She would not let anyone work with her, did not want to move around, did not want to play.    She was on the same page as I was.  The next thing that happened was Lisa Perry, the case manager on the cardiac step-down unit walked in.  Everyone likes to have Lisa visit their room.  She only ever comes into your room if discharge is imminent.  She said she wanted to make sure she had everything lined up in case discharge were to happen over the weekend.  We were going home on formula, and since it had been medically prescribed, she had to order it through our medical supply company, New England Home Therapies.  All this had to be done before the weekend, especially since it was a holiday weekend and a lot of people across MA would not be working on Monday, Patriot's Day.  Lisa is incredibly good at her job.  She is on top of everything and doesn't want any one to get stuck in the hospital for a couple extra days because she didn't take care of something.

Starting to feel better, but still no smiles

I decided to leave on Thursday night, leaving Chris to stay with her.  I wanted to go to the SRR pre-marathon pasta party at Casey's, because it was still marathon weekend, I was running with a club number, and life goes on.  I had also decided to go in to work on Friday.  I really needed a change of scenery and thought it would do me good to go to work.   By the time I left on Thursday, we had all made a plan.   We would do a swallow study Friday afternoon. If ORL thought they could perform the injection within the next few days, we would remain inpatient until that happened.  If they could not, we would likely go home late on Friday.  So I went off to Casey's and then home.  It was odd being at Casey's and I definitely shed a few tears when friends asked me how we were doing.  Then I went home to an empty house, the first time I've slept alone in my house in 9 years.  My emotions finally got the best of me and there were a lot of tears.  Same was true at work - each time someone asked how we were doing, I teared up.  But it was good to be there.  I was texting back and forth with Chris.  He had managed overnight, but he did not have a very good night.    I was not in class yet when Dr Friedman came by, so Chris put him on speaker.  The plan was the same.  ORL had said no, so we would start the discharge proceedings after the swallow study.  He would stop in to talk to us after the swallow study.  I only stayed until lunch, and then I took off and went to the hospital.

Starting Thursday, Reya had become quite uncooperative.  She only wanted to watch "Beast" on repeat or go for walks around the hospital.  She was not interested in playing or engaging with anyone.  She had a visit from pet therapy.  She hated it, despite loving dogs outside of the hospital.  She had refused to work with the physical therapist and the music therapist on Thursday.  The PT was pretty used to this, but the Music Therapist, James, was pretty defeated.  He said he could almost always get through to kids with music.   We were set for the swallow study between 2-3 on Friday.  We went down shortly after I arrived, so 2ish.  It is not overly surprising that she refused to cooperate.  They were able to get about 4 swallows out of her.  It was enough to clear her to have purees and yogurt, but nothing else.    This unwillingness to cooperate was her ticket home.  She was miserable.

Therapy dog Zumi

Dr Friedman came by, as did Susan, the NP.  Reya's numbers were not perfect.  They would have liked to have seen less fluid in her lungs.  But there was nothing they were doing at the hospital that we couldn't do at home, other than a chest x-ray every 48 hours.   So we all agreed she would be better off at home, where she could recuperate in her own environment.  Dr Friedman warned us we might not stay home and went over what we should look for.  He told us that if we were first timers they would keep us, but they trusted we knew what to look for and what to do.  Susan went off to prepare the papers.  Lisa Perry came by again to tell us our order would come on Monday and she had asked nursing to send us home with enough Pediasure to get us through the weekend.  We also discussed the Visiting Nurse again, which after thinking it over, I realized it was a good idea.  Lisa encouraged us to have her come at least once, stating if things got better we could discontinue it.

Discharge!

The ride home was not overly smooth.  She fussed for the first half, then somewhere near Harvard Square, she vomited, aspirating on the vomit.  We took her out, let her finish, and cleaned her and her car seat up.  The rest of the ride, we were on edge.  She was still pretty fussy.  I expected her to be pretty excited to get home, especially since Hope was finally home, but she was so weak, sad and probably still in pain, she only perked up a little.  She did walk around a little and played with some toys.  The next 24 hours, we were all on edge.  Her sleep was noisy due to the stridor caused by her vocal cord injury.  When she cried, it was so weak that we couldn't really hear it in our room.  I got up multiple times to check on her.  I checked her breathing - it was still pretty heavy.  In the morning, she was not much improved.  I considered calling the pediatrician and having them check her.  I even considered taking her back to the hospital.  It was a rough 24 hours.  But around dinner, she was smiling again, and it seemed she was turning the corner.  Saturday night was better.

A smile!

Home!   Watching “Beast” again

Sunday morning, Chris' brother and girlfriend came for brunch.  His parents were coming for dinner and we thought it better to not overwhelm her with everyone at once.  It was nice.  Both Rob and Tiana checked her out.  Rob is a firefighter and EMT and Tiana is a home health aide, so both have medical expertise and know what to look for.  Mireya was definitely feeling better and was happy to see them.  Everyone loves Uncle Robbie :)  She was much improved by Sunday, but it was still reassuring to have them look at her.  That afternoon, the visiting nurse came to check her out and get a baseline.  I love this service.  It is just another person to lay eyes on your child and offer you reassurance that everything is ok.  We had a visiting nurse from when Reya was 3 months until she was 11 months.  I learned so much from her nurse, Jayme, and her colleague, Tara, so I knew having them back was a good thing for us.  Reya was not doing great, but she was doing much better.  The nurse made a plan to come back at the end of the week.   She told me the order was for 2-3 visits a week.  When we had the visiting nurse the first time, she only came once a week.  This is how borderline Reya was in going home.  We saw a ton of improvement as the day went by.  She was looking better and better with each hour.  By the time Chris' parents got there.  She was in pretty good spirits and clearly feeling better, but still not perfect.  They went off to dinner and I put her to bed shortly thereafter.

There she is!

The next week was mostly quiet recovery.  Monday was the marathon.  Tuesday- Friday Hope went to school, so it was just me and Reya resting at home.  The weather was not real good, so we mostly stayed in.  We saw her pediatrician on Wednesday.  She thought she looked good.  We discussed everything Reya had been through.  I told her Reya had vomited and had a pretty massive blow-out the night before.  We decided to keep an eye on it.  The nurse came on Friday, and we also discussed the vomiting.  I spoke to Dr Mahony (our pediatrician) on the phone that afternoon.  Again, we decided to keep an eye on it.  We thought she potentially had enterovirus, which can cause GI symptoms as well as upper respiratory stuff.  Crazy, because we had not gone anywhere.

"Eating" on the go

Cute little backpack (she's not a fan)

By the end of the week, it was clear she was not ready to go back to daycare.  Not only was she not ready, but we had follow-ups scheduled for 3 out of the 5 days.  The vomiting continued.  In fact, she is still vomiting, almost 4 weeks post-op.  Only once a day and without the diarrhea.  It's a mystery as to what is causing it.  I've wracked my brain trying to figure it out.  There is no consistent pattern, though it seems to mostly be in the middle of the night due top coughing or in the morning.  My first thought was that we were running the feed too fast.  I slowed it down, and that seemed to help at first, but then it restarted.  Things we've discussed that it could be: reflux, intolerance to the high-octane formula (30cal per ounce, which is a lot!), being too full, congestion....
I don't think it is reflux, mostly due to it not being consistent and there being no other symptoms.     
It could be intolerance, but she handled it fine for the first week she was on it.
Congestion is definitely a possibility - we've all had colds.
My current thinking it that she is getting too full, getting a full feed on the heels of her continuous feed.  She gets 400mLs (about 13oz) continuous feeds at night, and three 110mL bolus feeds through the day.  It has started to happen almost every morning.  So I've decided to back off on the morning feed and add volume to the afternoon and evening feeds to see if that helps her.
I've also been thinking back to previous open heart surgeries.  After each one, both of our kids vomited a lot.  For a couple of months post-op.  So it could just be heart surgery.
None of her doctors seem overly concerned, so while it is stressful and confusing, I'm trying not to be too concerned.  She does not seem overly bothered by it either.

Last week we had our first visit with Dr Hseu in the voice clinic.  She was very kind.  She is a young doctor and is a specialist in vocal cord injury.  She evaluated Reya and scoped her again.  She has right vocal cord paralysis.  The left, which was the previously damaged cord, has shown some improvement.  This improvement means she is now a candidate for the injection.   She wanted to prioritize her, and we've scheduled it for May 23rd, with the hope of a cancellation.  It could be worse, we could have to wait 3 months.  She will scope her one more time before the procedure, to be sure the left has recovered enough to make it safe.  The injection is Restylane, so Botox, essentially.  It fills in the vocal cord, allowing for safe swallowing.  It is not permanent, but the idea is that the vocal cord will have healed by the time the body resorbs the Restylane.  If not, they will perform another injection.   This gives us a ton of hope because her not being allowed to eat / drink has been really hard.  Almost as hard as having a baby who does not want to eat.

Feeling better at ORL's voice clinic

Getting familiar with the chair

On Wednesday we followed up with Dr Friedman.  He was mostly pleased with her progress and cleared her to go back to daycare on Monday.  Her chest xray still showed some fluid, but there was improvement.  Her weight was up, her sats and color were also better.  She is currently satting in the high 80s- low 90s.  Personally, I would have liked to have seen them higher with the closure of the vsd, but the fenestration is so big that there is still a fair amount of communication between the chambers.  Her incision looked good to him, and he snipped a bit of suture that was being pushed out.  He was happy to see her back to her impish self, walking all around the exam room.  She was happy to see him, which was also improvement - she didn't even want him in the room on the last day of our admission.

Thursday, we had our follow-up with the cardiac surgery team.  This is a virtual visit, done through an app similar to FaceTime or Skype.  Mainly they want to check the incision and go over any precautions.  She said by next week, she'd be clear to be submerged in the bath again.  Sternal precautions for 3 more weeks (this means she can not be picked up under the arms, and is really hard at this age!)

The rest of the week, we went for walks, rested, and recovered.  The timing was good for me.  I needed to recover from the marathon, so I guess we've kind of been recovering together.  We are all getting over colds, which hit me like a ton of bricks late week.  Each day is a little better for both of us, though it certainly has not been smooth.  It has been pretty stressful and at times, I have been pretty down in the dumps over it.  Tomorrow we go back to school for two half days, then if that goes well, we will do full days the rest of the week.  Then back to normal.  Or as normal as one can be 4 weeks post open heart surgery and 2 weeks post monsoon marathon.  This is the final stretch and then it will be summer.  We are hoping for a quiet, restful summer, recovering from everything we have gone through in the last 4 years.     

Trying on a new hat

   

Back to her silly self

Enjoying the spring weather at the playground

Feeling more like herself - playing in the front hall

Feeding baby

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Miles for Miracles - Molly Crellin

An uphill swim in honor of a warrior

At the finish of the hardest marathon I've ever run

Two Mondays ago, April 16, 2018, I ran my 7th Boston Marathon, my 23rd overall marathon.  I look forward to Marathon Monday, lovingly referred to in the Boston running community as "running Christmas, every year, whether I am running or not.  But this was to be my first return to my home town race for the first time as a mom of two, for the first time since Reya was born and for the first time since all the trauma we have endured over the last 19+ months, so I was pretty excited about this year and trained relatively well for it.  I trained for this race and would run it in Mireya's honor.

When I applied for the number from my running club, the Somerville Road Runners, I had no idea what was on the horizon.  All of my perceptions about the race ended up being wrong.   We were targeting June for Reya's third open heart surgery, so I had no reason to believe it would happen so close to the marathon.  But it was clear in January, after her 7th catheterization, that she could no longer wait and the plan was to do it 3 months after that, lining up perfectly with Patriots Day.  We originally were targeting April 18, 2 days post marathon, but when you schedule surgery, you only get to give them a ballpark of when you'd like to schedule it, so I said I'd like to do it in early to mid- April.  April 2 was our second choice, which is when we were originally scheduled for.   The more I thought about it, the more 4/2 seemed like a better date.  My heaviest training would be done and surgery would take place during the dreaded taper.  The biggest downside was that there would be little time to rest.  By the time the marathon rolled around, the weight of surgery would be lifted and Reya would be on the road to recovery.   My trek to Hopkinton to Boston would be glorious and triumphant.  Well, sort of.  We could have never anticipated how hard this surgery would end up being.  I thought I was prepared, having talked to so many other heart moms whose toddlers had also gone to the OR for similar surgeries.   I thought the first 3-4 days would be really hard until her chest tubes came out and then we'd cruise to discharge.   But as usual, Reya likes to throw curve balls, and that she did.  Turns out, she decided she needed to sleep through the chest tubes by requiring extra respiratory support.   I thought we'd spend a night or two in the CICU and then we'd go to the step-down unit with the chest tubes, instead we were in the CICU for two more nights after they were pulled.  The first one was pulled while she was still intubated, the second one while she was still pretty sedate and heavily medicated.  By the time she went to the floor, she only had one extra accessory - oxygen.  It took her 8 days to come off of that.   I thought by the time she went to the floor, she'd be feeling pretty good and would enjoy roaming the halls, playing in the wonderful playroom, and taking field trips to the lobby.  We did all of these things, but more to keep her occupied and get her mind off of her misery, not because she enjoyed it.  The was no rest in that week leading up to the marathon, I was walking several miles a day just to keep her calm.  When we weren't walking, I was standing next to her crib soothing her.  So much for staying off my feet.

But it did keep my mind off taper and obsessing about the race.  In the week leading up to the marathon, I was aware that the weather was not predicted to be great, but having run in both 2007 and 2015, I brushed it off, figuring it would be fine.  I didn't have too much time to obsess, I was focused on making Reya comfortable.  By the end of our second week in the hospital, she was absolutely miserable.  There were only two things that were making her calm - "Beast" and walking the halls.  Thursday night I left Reya with Chris so that I could go to the pre-marathon pasta party at Casey's, our Thursday night run.  I wasn't in great spirits, but it was uplifting to see friends and get my mind off of Reya.  I went home to sleep, alone in the house overnight for the first time in 9 years, while Chris slept at the hospital for the first time.  I also went to work the next day for the first time in two weeks.  We were discharged that Friday, and we were all relieved to be going home.  If there was any date I had targeted for discharge, it would have been that Friday, so that we'd be home for Running Christmas.  It was certainly close, and I had started to strategize what we would do if she were still in the hospital come Marathon Monday. 

Once we were home, I was able to focus a little more on the race and, unfortunately, on the weather.  My parents were in town, which was beyond helpful.  With extra hands, I was able to still do all of the fun marathon traditions - expo, finish line, etc.  A bunch of us went to the expo.  It was so much fun and as always, really got me excited.  Every time I run Boston, I get chills going to the expo to get my number.  It is such an exciting privilege to be able to run this race.  Later that afternoon, my mom and I went down to check out the finish, another tradition I participate in every year.  This year was exciting because there was a meet and greet with some of the Elites.  I got to meet Shalane and take a picture with her!

Welcome to Boston, runners!

Checking out the finish

Meeting a giant bull mastiff

Shalane!

Look who's smiling!

Sunday, Chris' brother and his girlfriend came up to see Reya for brunch, then his parents came up for dinner.  They all went out for dinner, while Reya and I stayed home to relax a bit.  By Sunday, I was in full weather obsession mode.  It was clear it was going to be bad, but I don't think any of us understood how bad it could possibly be.   I fretted over whether the clothes and shoes I had sent for the post-race hotel were going to be warm enough.   I fretted over the water bottle I was going to drop for 30k, which would have new gloves attached to it (This is the one thing I knew I'd need after my experience in 2015). I fretted over the clothes I was going to wear.  There were a lot of texts exchanged with other friends who were running.   When I went to bed, I was still thinking I'd wear crops, a longsleeve shirt and my singlet.  I'd wear a rain jacket that I'd eventually shed.

Flat Molly, all ready to go

When I got up Monday morning and checked the real feel temperatures, I decided to wear a winter weight pant instead.  I knew, given the forecast, I would not be hot because I was going to be soaked.  This was the only accurate prediction I made.    I put my number on my pants so that it would be visible at all times because I knew my pants were the only thing that were definitely not coming off.  On top, I put a longsleeve shirt with my singlet.  I put arm warmers over my shirt for some extra warmth that could easily come off.  I wore the hooded jacket I had received for volunteering last year on top, thinking I'd ditch it by mile 3 or 4.  I packed a bag for Chris to bring to 30k.  It had a new shirt, new sneakers, new socks, a new jacket.  I told him I may or may not stop - if I was having a good race, I would not stop, but if things were marginal or bad I would.  I planned to try and be aggressive, mostly just to get it over with.

I am always nervous on Marathon Monday, but usually I am also excited.  With the forecast, I struggled to find any of that excitement.  All I felt were nerves.  I woke up before my alarm, putzed around, trying to occupy myself.  I waited for the video crew I had been working with for the last couple months to show up, as they were going to document me getting ready for the race.  They showed up and it was go time.  They asked me how I was feeling, I said nervous and maybe a twinge disappointed (ok, maybe more than just a twinge).  Before I knew it, it was 7:00 and my ride was waiting outside.  The video crew got a few more shots and we were off to the bus.

When I got to the bus, it was clear I was definitely not alone in my weather induced nervous dread.  There was also a feeling of excitement.  A couple non-running club members who had dropped significant others off were also on-board to see us off and wish us well.  My friend Victor made me cry as he wished each of us well and told me I was going to destroy this and that he loved me.  This was the first time I had ever taken the SRR bus to the start and boy, was it great to be surrounded by friends for this nerve-wracking drive to Hopkinton.  We were able to joke and laugh and pass the time pretty quickly.  We remarked about how lucky we were to have this bus.  We were surrounded by friends and had someplace warm and dry to wait until it was time to go.  Most of our fellow runners were sitting down in the cold, wet field amongst strangers.  We strategized on our gear.  Everything we had on the bus had to go with us or get thrown out.  We shared "gorilla tape" for our shoes.  One friend gave me a poncho, which kept me dry until the start, when I ditched it, and another gave me food prep gloves, "rain coats for my hands", which stayed with me until mile 23, despite changing my gloves at 30K.  Even after the water had seeped into my gloves, the outer layer almost served as a wetsuit, keeping my hands warm despite being wet.  It turns out, my time in the hospital left me unable to consider all the throw away gear I might need.

Melissa and I on the bus

Wave 4, representing

One by one, the waves of runners unboarded the bus.  Shortly after we got there, the fast guys left for wave 1.  Then 20 min later, wave 2.  Another 20 min, wave 3.  Finally it was our turn.  One more trip to the portapotty (the running club buses have their own portapotty bank, which is awesome - no lines!!) and we were off to join the hordes of runners heading to the start.  With everyone avoiding traversing the muddy field, it took as about 45 minutes to walk the mile or so to the start.  It felt like a death march.  People were shedding clothes.  I didn't want to shed anything until we were about to run.  I had brought an extra pair of sneakers so that I could throw away my wet, muddy ones.  I was able to toss the wet muddy sneakers right before making the final turn up to the start on Main St.  When we made that turn, I felt panic and chaos.  Apparently there was a some sort of technical malfunction and they had done away with the corrals and merged waves 3 and 4.  It was a madhouse, but probably worked to our advantage back in wave 4.  We showed our numbers and just blended in with the rest of the crowd.  It had been a cold, wet walk and I contemplated running in the throw away sweatshirt my friend Melissa had given me on the bus.

THE START
I was finally able to get excited as we approached the start.  I was getting ready to run my favorite marathon for the 7th time.  Each time has been different and special in its own way, but this one truly felt like a journey.  I had managed to stick with two friends of similar pace from SRR.  We cried tears of joy and jumped up and down in excitement.  It was definitely raining (hard!) but I barely remember it raining at the start.  And then, we were off!!   I got about a quarter mile in before I decided to ditch my sweatshirt.  Within a mile, I lost my friends.  I was ok with this, I had a slightly more aggressive plan and felt good, so I went with it.  As we barreled down the first big hill, I heard loud cheers.  I looked to my right and there was a family of kids outside in the bathing suits.  All I could think is, OMG, they must be cold!  Then we passed the biker bar on the left.  More loud cheers.  All I could think is, well, they're probably not feeling the cold.  For the first 5-6 miles, I felt great.  I was averaging 8:20s and felt pretty excited.  As I passed the dozens and dozens of runners from Children's, I thanked each one and told them how my daughter had been discharged three days before.  Around mile 2 or 3, my friend Dennis passed me, and I cheered him on.  Then I passed my friend Heather and I cheered for her.  The rest of my friends I never saw.  We were all running incognito in ponchos and jackets.

ASHLAND
I don't remember much about Ashland, other than the fact that I saw the banner and I felt good.

FRAMINGHAM
This is where the weather started to take its toll on me.  I had stopped feeling good around mile 6.  I was still holding my pace, I just wasn't feeling as good.  I can picture the hill where I stopped feeling good.   As we came upon the commuter rail station, we came upon the first big clump of spectators.  Such a welcome sight. Usually, I hate Framingham,  as it is one of the uglier, more boring portions of the course, but this year, the crowds were thick and loud.  I needed them.  They pushed me through Framingham and into Natick.       

NATICK
I have a lot of memories in Natick.  For years, my friend Jen lived here and would cheer me on at mile 8.  I thought about her as I passed her old condo community.  Then at mile 9, I saw the Tufts cheer zone.  I ran for them for 3 years, so more memories.  I saw coach Don waiting patiently for his runners, presumably with peanut butter and jelly sandwiches.  He didn't see me.  By this point, I was feeling kind of lousy.  My legs had no turnover and were already sore.  They felt like they weighed a thousand pounds, which they probably did with the water logged sneakers.  I couldn't have gone out too fast...I had run my last training run on the same course at the same pace just three weeks prior....and felt great the entire 20 miles.  Into Natick center.  The crowds were great again.  On the other side of Natick center, there were two miles of nothing, but somehow these miles passed and I knew were were heading into Wellesley

WELLESLEY
Oh thank God.  You are welcomed into Wellesley by the Wellesley college girls and the infamous "scream tunnel"  We all needed that at this point.  We had been poured on and it was clear that the usual runner camaraderie was not there.  No one was talking.  The runners on the course were silent, which is remarkable because runners are typically a garrulous, loud bunch.  But the Wellesley college girls were there to cheer us on.  It was thin, but they were loud.  They all looked like they had been swimming, so I could only imagine what we looked like.  I was happy to get this boost from them.  Into Wellesley Center.  More crowds.  Thank God.  Halfway point.  Somehow my pace was still good, though I was fighting desperately not to walk.  I don't remember much about this stretch, but I think I spent much of the next two miles reflecting upon past years, and somehow, I fought my way to the big downhill at mile 15.  Right before this downhill, I spotted a fellow SRR invitational runner, Chris Lupien.  I exchanged a few words with him, but I didn't have enough energy to continue conversation or keep up with him, so I held back and let him go.

NEWTON
Grossman's hill.  I hate this downhill and the uphill that follows it.  It kills your legs.  But I was so glad to see that Newton banner.  Three more towns to go.  Newton, Brookline, Boston.   The stretch following this downhill is known as deadman's curve.  It's an uphill stretch of road that goes over Rt 128 / 95.  In a typical year, there are no spectators here.  It is boring and ugly and can be hot.  But not today. To my surprise, the off ramp to 128 was filled with crowds giving us their all.  What a relief.  I saw my favorite sign around this point "Boston 2018, the world's largest wet t-shirt contest"    Up and over the hill.  I was starting to find that, given the conditions, walking the hills was faster than running them so, I walked about half of it, then decided to give running a go again.   Getting over this hill is always a big milestone for me.  It brings me within two miles of 30K where I know my teammates are waiting.  I trudged forward.  Newton- Wellesley Hospital.  I thought of seeing my friend Brian there one Marathon Monday many years ago after the birth of their first child, Connor.  Past the Woodland t-stop.  More crowds.  Another quiet mile through Newton, then the firehouse!  The right at the firehouse always perks me up.  This turn marks the first (and in my opinion, the worst) of the three Newton hills.  I ran most of this hill.  At this point, it was mostly survival until I could get to 30K.  One mile to go.  I passed the 18 mile mark.  Started the downhill.  Almost there.   I unzipped my jacket, to make sure my singlet was visible for the spotters. I didn't think I'd still have this jacket on, but it kept me dry for about 12 miles, then for the rest of the time, it kept my body heat in.  It seemed to take forever to get there.  Then I saw the spotters -  I don't really remember who was spotting, but they were excited to see me.      By the time I arrived at 30K, I was so tired, stiff, and wet.  I was looking forward to some dry gear.  I spotted my dad, then Chris, then the video crew.  I pulled off the course and right into the tent, stripping my clothes.  Members of my team surrounded me.  Its all a little blurry, I was a little delirious, but I remember Kate, Sarah W, and Alison L acting as my pit crew, along with Chris and my dad.  I was certain I needed to save Florentien's food prep gloves, as I thought they'd help me get through the next 8 miles, so Alison took charge of those.  I changed my shoes, my shirt, my jacket, and my gloves.  I put the food prep gloves back over my regular gloves, like I was scrubbing in to surgery.  Kate offered me a rice krispy treat, which I declined because I didn't have the energy to eat it.   I told them how brutal it was out there.  I was also aware I didn't want to spend much time there because I really just wanted to be done.  The more time I spent there, the longer it would be until it was over.  I was also aware that the longer I spent there, the less likely I'd be to get started again.  So off I went.  It was so nice to be dry.  Then I stepped in a puddle.  Ugh.  Being dry was nice while it lasted, all of a half mile.

Right after 30K, you go up the second of the three hills.  I knew that my co-worker and work husband, Paul, might be here because his parents live there, so I made my way to the right hand side.  He's really tall, and it was not crowded, so he was easy to spot.  I ran over to him and gave him a soggy hug and up the hill I went.  I don't remember if I ran or walked this hill, but I think I ran.  Somewhere in the next mile or two a friend snapped the only shot I have of me running this brutal race.

HEARTBREAK HILL
Not a town, but certainly worthy of its own headline.  The third of the three hills.  Usually Heartbreak Hill is 2-3 deep with people cheering and picnicking.  There were people cheering, but it was pretty thin.  For the first time ever, I walked most of this hill.  I was so tired.  Everything hurt.  On these uphills, it was faster to walk than run.  My new strategy was to run on any downhills and walk on any uphills.  In between, I'd try to run as much as possible.  I finally got the energy to run again as I got to the top of the hill.  Just as I crested the hill, the skies opened up with a torrential downpour.  It was comical, but not at the time.  It was the kind of downpour that if you got caught in it in the summer, you'd scream and run for cover.  But we'd been out in these conditions for 3 hours at this point, so no one reacted.  Other than the few spectators cheering, it was silent on course.  As I mentioned before, usually there is a camaraderie amongst runners, but not in this race.  No one was talking.  We were all miserable.  It was bizarre and one of the most remarkable things I noticed.

Once you get over heartbreak, you have crested the last big hill.  The last 6 miles are mostly downhill with a few small uphills.  You are greeted by the BC students, most of whom  have been drinking since they woke up.  This year was no exception.  The BC students were there, and they were having a good time despite the weather.   The crowds were thick and powered me through.  Before I knew it, I was making the turn into Cleveland Circle.

BOSTON
For about a half mile before entering Cleveland Circle, you are in Boston.  This is such a relief, but also a tease.  You have traversed 6 towns at this point and Boston is the destination.  There are over 4 miles to go.

BROOKLINE
Into Cleveland Circle and Brookline we go.  Watch the train tracks.  They call this section the meat grinder.   The course has destroyed your legs, then it's downhill into Cleveland Circle.  As you turn onto Beacon Street, there is a set of train tracks.  I was particularly aware of these this year.  I feared they would be slippery.  I got across them and trudged on.  Four more miles, mostly through Brookline.  I can do this.  Down Beacon I go.  I thought about the awesome training run I had had there back in February, and how good I felt that day.   There is a hill going up into Washington Square.  I walk it.  At this point, I'm walking all the hills and all of the water stops.  Mile 23.  The Nutritionist from the hospital had told me she'd be here, so I keep my eyes out for her.   I don't see her, but at least it gave me something to do for a mile.  Mile 24.  Coolidge Corner.  Ok....I really can do this.  I keep seeing the same runners around me.  There's a Children's runner with a shirt that says "For Emily"  I want to talk to him, but can't seem to get close enough to him, nor do I have the energy to initiate conversation.  There's another girl, I think she was wearing white and had a curly ponytail, who has been running around me since the beginning.  I make my way down Beacon Street, being sure to run the downhills.  We come through St Mary's t-stop.  I think about the hospital, since it is not far from this section of the course.  I spot Mt Citgo (the hill leading us up and over the Mass Pike and into Kenmore Square).  I walk this hill and then make a promise to myself not to walk again.  We're almost there.

BOSTON (again)
Kenmore Square.  At last.  Home stretch.  We were going to make it.  The Citgo Sign.  In a normal year, you can see the citgo sign from miles away, this year, you couldn't see it until you were right underneath it.  It was also painted in the road with "one mile to go".  After 25 miles in the rain, one more didn't seem too bad.  This is, afterall, the best mile in marathoning.  Under the Mass Ave overpass.  There were a few runners gathered here where it was dry, I'm not really sure what they were doing.  I knew when we came out of this overpass, the famous turn was next.  Right on Hereford, left on Boylston.  A murmur went through the wave of runners.  We were all aware of it.

THE FINISH
The crowds thickened.  It was time to turn.  Hereford St.  I had never seen a more beautiful site.   The road was littered with different colored ponchos.  It was pretty, but also a little dangerous as everyone stripped their brightly colored protective gear and discarded it so they could cross the finish in the outfit they had planned to run in. Runners were crying, I was crying...we had been through a lot and it was such a relief to be here.  Left on Boylston.  This is the greatest finish of any marathon I have ever run.  You make that turn and there it is.  The finish line.  The crowds are deafening, and even in this weather, they did not disappoint.  I spotted an SRR headband and called out to the person, she didn't see me.  But just a few people over, I spotted an ex-coworker spectating, who also spotted me and screamed my name.  I tried to soak it all in.  It was glorious.  I cried some more.   I had waited all day for this moment, and now I didn't want it to end.  As I neared the finish, I pulled over to the left side.  I knew the camera crew had set up cameras over there.  I've done this enough times that I also knew that if you come across the finish on the left side, they usually announce your name.  Sure enough, as I approached I heard them call out "Molly Crellin of Arlington, MA"  A moment of glory.  I was no longer feeling the burning in my tired legs, the aching in my back or the fact that I was drenched from head to toe, as if I had jumped into Walden Pond fully clothed, and that I had been drenched for over 4 hours, probably closer to 5.  I crossed the line, triumphantly, laughing and crying.  I stood there a moment or two, trying to bask in the moment.

I hung around a few more minutes, not wanting it to be over.  Ironic, given how just an hour earlier, at 30K, I felt like it could not have been over soon enough.  Many others were just hanging out like I was, looking back up Boylston St from where we had come.  I couldn't tell you what the weather was like at that moment, I was so focused on the fact that I had finally finished, but it was probably raining.  As I stood there, perfect strangers came up to me and we hugged as if we were long lost friends.  Undoubtedly, these were people I had been running near for the last few miles.  Everyone was just so elated to be finished.  I didn't want to leave, but I knew I had to.  I knew the longer I waited, the more likely I was to get cold and I knew that would happen really fast.  I snapped a selfie and made my way through the finisher chute to get my medal, my poncho, and my food.   Next stop - Boston Park Plaza.

THE PARK PLAZA
Getting to the Park Plaza felt like a marathon itself.  The finish line is between Exeter and Dartmouth St.   The Park Plaza is at Arlington.  The streets are alphabetical in the Back Bay.  I took a right on Berkeley, left on St. James.  At St James, there was an additional medical tent.  It was gigantic.   I could feel the heat coming out of the tent.   I contemplated going inside to get warm before heading up to the hotel room, but I also knew I needed to keep moving.  Everything hurt when I stopped.  So I plugged forward.  Into the lobby, which was packed - runners, families, spectators.  It's always packed.  I trudged towards the elevator and tried to remember the number of the hotel room.  I knew it was on the 6th floor.  The elevator line was ridiculous.  I didn't know how I was going to wait.  It hurt really bad to stand still and I was afraid I was going to keel over.  Then an angel (well, actually a hotel manager) appeared out of nowhere and offered us the service elevator.   No one hesitated and back we went into the bowels of the Park Plaza, and up the service elevator to the 6th floor.  I came out and a girl asked me if I was looking for SRR.  I couldn't figure out how she knew, but now I realize I had my SRR hat on...lol.  As is customary, as the door opened,  everyone cheered.  I was so happy to finally be there in that warm room surrounded by friends.  Tina got me some soup.  It was the best tomato soup I've ever had.  Every thing ached.  The one thing I had been dreaming of since about mile 22 was ibuprofen.  Tina, who thinks of everything, had it waiting for us.  My entire body ached.  I was shivering.  There was a line for the shower, so I decided to just go ahead and change into my dry clothes while I waited.  My teeth finally stopped chattering.  I let a friend go in front of me because she looked colder than me.  The shower should have felt good, but I realized I had some pretty bad chaffing.  It was good to be warm and dry again.  I thanked Tina for the hospitality, the potato chips, soup, and ibuprofen and was on my way to the T to head home.

It is always so weird to me to get on the T to ride home alone.  In a city packed with runners, I was the only runner in my subway car.  Chris picked me up in Davis while my dad ran out to get pizza.  The camera crew was on their way over to video my homecoming.  I reunited with my family, ate some pizza, and headed back out to the post-race party to trade war-stories.  Now that we were all dry and fed, it was nice to hear about every one else's day.  Most of us had suffered similarly.

It was certainly a day to remember.   I don't think I've ever been that sore in my life.  I walked down the stairs backwards for three days.   I could barely walk for two.  I tried running last Monday, a week after the marathon, and everything hurt.   I've run twice more and biked three times, and each time, my body feels a bit better.

I finished in 4:09 and change.  I didn't know that number for sure until a couple of hours later.  It didn't matter to me.  I had done the best that I could, I had finished, and that was going to have to be enough.  It was not about performance at the 122nd Boston Marathon, it was about survival.  A true feat of endurance, the hardest marathon I have ever run.  My conservative goal had been to come in under 4 hours,  so it was a little hard not to be disappointed, but I am pleased that not only had I finished, which was never a given, it was also not my slowest marathon.  As I've talked to other friends who ran, most were in similar situations.  More than half of the elites did not finish and those who did, ran significantly slower.  The women's winner, Des Linden, ran a time that was about 15 minutes slower than if the weather had been optimal. 




It was hard, but I got through.  I have two little girls at home who have been through worse.  Mireya's recent surgery and hospital stay gave me wings on this difficult day.  I thought of her in my toughest moments and knew quitting wasn't an option this year.  It would have felt worse to quit.  I ran this race in her honor of all she has been through so far in her short life.  This story ended in triumph, the same way I hope hers will. 

Me, my girls, and my trusty Bob

I hope you can take the time to check out this 9 minute documentary we have been working on for the last two months.  Above Summit captured my family perfectly.  They have given us an incredible gift and I'm thrilled to share it with the world:

Racing Hearts


If you’d like to donate to my run for Boston Children’s at the New York Marathon, here is the link to my page:

Miles for Miracles - Molly Crellin

So far, I've raised over $4000 and am currently in first place.  I'd like to get to $10K before New York.  I've got 6 months to go :)

       

false start, hitting reset and (m)omentum

Playing in the toy room.   A shell of herself.

(Catching up)

It's been over a week since we handed Reya over to her surgeon.  A long week.  A week full of the ups and downs of any long admission.  It seems she is finally on the road to recovery, or so we thought.

Since my last post, there have certainly been a lot of down moments.  As I was finishing up that post, we had decided we needed to reintubate.  Shortly afterwards, the breathing tube was put back in.  The next day, Thursday, was a quiet day of rest, allowing her to heal from having to be reintubated.  Chris and I went in after rush hour, stayed through lunch, and went home before rush hour.  We had been at the hospital really late the night before, she was stable with no chance of anything exciting happening (good or bad), and heavily sedated.  It was like watching the grass grow.  To be useful, I swapped out her gtube button.  Our nurse, Rebecca, was impressed.  She told me that they needed a special training to be permitted to swap out gtubes and that she had never done it.  GI had taught me at our last visit.  I explained to her it was kind of like changing an earring.  You prep the new button, take the old button out, pop the new button in, and blow up the balloon with sterile water.  It takes about 5 minutes, if that.  However, it is much easier and much more pleasant to do on a sedated child.   At this point, we had watched two kids come and go in the room next door.  It was kind of discouraging, but I kept telling myself, they were a lot older than Reya, making the recovery process much faster.  We got home form the hospital around 3:00.  We were both out of sorts and didn't know what to do.  I went to the grocery store so that I could cook us dinner at home.  We ate dinner in front of the TV, watching Jeopardy, and reminisced about the days before kids.  After dinner, we called to check in with our nurse, Molly, to see how things were going. 

Sleeping peacefully.

The day after that,  Friday, we spent most of the day waiting to extubate.  Danielle, from the first day post-op, was our nurse again.  Kayla, one of our favorite nurses from Mireya's first two surgeries, was next door.  I decided to run in that morning so I could get there bright and early.  I ran with a backpack, and went to the gym across the street to shower before heading upstairs.  I had done this the day after surgery, too.  It saves me time and kills two birds with one stone.  I was able to get there in time for rounds and did not have to wait for rush hour to be over.  Chris came in after rush hour, especially knowing I was there already.  As I went up the elevator, I realized another woman in the elevator was a person I had been communicating with through the BCH Facebook page.  Her daughter was the newest patient in the room next to us.  We chatted a bit, then made our way in to the unit.  Shortly after I got there, it was time to pull the first chest tube.  I was relieved this was going to happen while she was sleeping... chest tubes are super painful and one of the things I was dreading most about this surgery.   This is where things got interesting.  As they were pulling it out, some bloody tissue came with it.  The nurses, while not frazzled about it, were not happy.  They said it looked vascular and was something called omentum.  I had never heard of this before, but Danielle explained they would need to get a member of the surgical team to clean it up.  The surgeon arrived a few minutes later and we chatted.  He gave me a lesson on omentum.  It is actually an organ, and it is not 100% clear what it does, but they suspect it has a part in healing and preventing against infection.  He told me that they often find extra omentum in patients who have had appendicitis but did not have an appendectomy.  He said that sometimes when they pull chest tubes, the omentum gets attached to the chest tube and it comes out. It made sense to me that Reya would have omentum, being this was her third open heart surgery and a lot of healing had happened in her tiny little body.  Anyway, he cut it off, and stitched it up and said it would be like it never even happened.   Chris arrived shortly after that.  Extubation was set to happen after rounds.  We hung out a bit, then decided to go to lunch while waiting for extubation.  It didn't actually happen until about 4PM.  It went fine, and the plan was to continue to keep her mostly sedated overnight, so we went home that night.  On our way home, we decided to stop at Tango for a drink to celebrate the day's progress.    It felt like we were gaining momentum.

Extubated, again.

At first, after the second extubation, she seemed to do great.  When I called Saturday morning, the nurse said we were ready to go out to the floor.  I was really surprised.  Well, once again she had other plans.  Right before I spoke to the nurse, Maura, she had given her Tylenol by mouth.  She aspirated and choked, causing her to vomit.  She desatted, and never really recovered, getting worse and worse as the day went on.  As Chris put it, it was a solidly mediocre day.  She had made it through extubation, but only just marginally.  Her breathing got worse and worse as the day went on, and when we came back from dinner, they had decided she had declined enough that she needed some positive pressure airflow, so they put her on bipap while we were at dinner.  When we left, she had looked pretty bad.  While we were at dinner, the nurse called to tell us they had put her on bipap.  Her lungs had collapsed and she was having trouble inflating them all the way.  Carbon dioxide had built up, making it an uphill battle.   When we got back, we were amazed at the improvement.  She was alert and reasonably calm.  I decided to spend the night.  Brenna was our nurse, and she was good.  Reya spent a solid 12 hours on bipap before they switched it to cpap on Sunday.  From there, we were able to work down from 10L high flow down to 3L low flow.  Finally, by Monday, 6 days post op, we were down to 2L and ready to go out to the floor.

Not feeling so great

Struggling

Bipap

Sitting with Dada

Sitting with Mama

When we came in Monday morning, 6 days post-op, our nurse, KK, was giving her a much needed bath.  She was a shell of herself, unrecognizable.  She had lost 2lbs, and at 18 lbs, she did not have much to lose.  She had dark circles under her eyes and was so weak she could barely hold her head up.  But this was better than Saturday, when she had the muscle tone of a 16lb newborn.   K.K. said she had been in great spirits that morning and that we would definitely be going to the floor.  While we waited, the feeding team came by and we were finally able to try and give her some food by mouth.  She had been asking since coming off of bipap.  She was so excited to see food, that she lunged for the pudding the feeding specialist brought her and practically fell over.  Unfortunately, it did not go that great.  She sputtered, coughed, and eventually vomited.  She was declared NPO (Nothing per oral).   Fortunately, we still had the gtube, so we were able to start feeding her and getting some of that weight back on her.

Off of Bipap / Cpap

Music Therapy

Music therapy with our friend James

Pudding

We waited most of the day for a room to be ready and when it finally was, we learned one of our old nurses had us.   It was Annie.  Annie is a funny story.  We had Annie during our first admission when she was training with one our favorite nurses, Stephanie.  She was terrible.  Her inexperience was clear and there was a lot for her to learn.  We often got her at night, and she was NOT what I like to call "a ninja nurse."  She always managed to wake Reya up.  She also had a thing for giving babies baths at 4AM.   We seemed to get her a lot, but we also got to watch her grow as a nurse.  She's actually pretty good now, but I was happy she was not our night nurse.

The biggest low of this admission, other than failing her first extubation, is exactly what we feared would happen.  It was pretty clear after the aspiration incident on Saturday and the feeding trial on Monday - her vocal cords had once again been compromised.  The last collateral that needed to be unifocalized was higher up, closer to her neck, and therefore closer to her vocal cords, making it more likely.  We spent much of the time in the CICU asking for them to scope her so that we could know for sure.  It was not on their priority list, so it did not happen until we went to the floor and even then not until Thursday, but more on that in the next post.  As we transitioned to the floor, there were a lot of questions.  How long would we be there?  With the feeding issues, this was really uncertain.  Then there was the oxygen, which she was clearly having a hard time weaning from.  And then her overall weakness...   It felt like she was going to be there forever and I started rethinking long term plans, especially for marathon weekend.  We had already postponed Hope's return until Friday.  It became clear it was going to be a day-by-day thing and that we were just going to have to wait.

The marathon before the marathon

The best way I know how to cope is by running.  When I applied for one of my running club's invitation numbers for the Boston Marathon this year, I had no idea what I would be up against.  At the time, we were planning on scheduling Mireya's surgery for the summer.  We were hoping to get past cold and flu season, out of the school year, and give her a little more time to grow.  But as always, she had different plans and she needed the surgery now.  When the scheduling department called me and told me they had scheduled her for April 2, I couldn't believe the timing.  Two weeks before Boston.  But in the end, it's really been good timing.  

During my last long run two weeks ago, which was great overall, I found myself overcome by emotion thinking about how much our family would have to get through in the coming weeks.  I saw dozens of Children’s runners out there, and thanked each one.  I thought about how normally the marathon seems so soon after that last long run, but for us it was so far away.  It has been about 6 weeks since I received that phone call scheduling her surgery.  It happened to come at the height of my training, a blessing really.  I was able to channel much of my anxiety into running and focus my attention on Boston instead of fretting over this giant surgery.  My heaviest training weeks came to a close this past Sunday, leaving me the space to focus on this next marathon.  Now to get through these next two weeks and the actual marathon will be a treat.    

The last two days have been a marathon themselves.  Yesterday, we got out of bed at 5:45AM to arrive at the hospital by 7AM.  It was an hour and a half before they took her back.  It was another 2 hours before we heard from the surgeon that they were about to make the incision.   2 hours after that until she went on bypass.  Another 2 hour wait from that point until we heard she was off bypass.  Another hour until the surgeon came by.  And then another 2 hour wait until we could finally get back to see her.  We spent a few minutes checking in with the nurses, then went home to collapse.  She looked great and she was sedated and intubated, so it was the one night I was sure I would be able to go home to sleep.  We didn't get home until 8:30PM.  Today has been another day of waiting around.  When we got here, she was still intubated, with the plan to extubate her shortly.  In order to do that, they had to turn off the sedatives and get her awake enough to breathe on her own.  More waiting.  We waited all morning and finally, after lunch, they were able to extubate.  She was pretty unhappy after extubation and had a stridor, meaning it sounded like she was working really hard to breathe and was making almost a croaking sound.  Her voice is weak and there is some concern they may have knicked her vocal cords again.  Unfortunately, her anatomy set her up for her to be high risk.  The collateral they unifocalized last night was up near her neck, so it would be easy to hit the vocal cords.   She's been pretty upset since she's been awake.  She's still on a lot of drugs and they're still tweaking things with her heart as she adjusts to new hardware and new flow.  She got some more blood.  So two pretty long days.  

The surgery went incredibly well.  Her surgeon, Dr Baird, is incredible.  He is confident and as our cardiologist says, "wiling to take on anything"  We were joking that maybe he'd like to take on Sanders.  He was able to unifocalize all of her collaterals.  He also removed the stents from her right side and said the pulmonary arteries look "normal" on that side.  He was able to place an adult sized conduit.  It is 19mm.  Finally he was able to close the VSD (Ventricular Septal Defect - the hole in her heart) with a 4mm fenestration, which allows for some shunting from left to right, which she does when she gets agitated.  Because of his amazing talent, we may be able to avoid any future surgeries, and do the rest of the work in the cath lab.    Due to the nature of her CHD, in particular the MAPCAs component, she will still need regular catheterizations, though hopefully not on an every three month schedule.  Hopefully we'll be able to space them out to once a year or so.  When we came in to see her last night, she was so pink.  I couldn't stop touching her skin.  For her entire life, she has had very mottled, splotchy skin and a dusky appearance.  Last night, for the first time ever, her skin was beautiful.  

I did get to hold her for about a half hour this afternoon.  She seemed to like that.  She relaxed a bit.  The music therapist person came by and played her "The Wheels on the Bus" and "Twinkle, Twinkle" which she seemed to like.  Then the blood pressure cuff went off and it upset her, so we felt she was safer in her crib.   Since then, she seems to be doing better if she can't see me.  I think I represent escape to her.  She wants to get out of here, and she thinks I can help with that, so I am currently hiding in the back of the room.  For most of the afternoon, she's been on and off agitated.  She will not settle and fall asleep, she's been awake all afternoon, pretty restless, possibly bored.    The anesthesia is also likely affecting her, we think she tends to feel pretty hung over after anesthesia.  She wants to roll onto her stomach, but is not allowed because of her chest tubes.  When we came back from dinner, she was in rough shape.  Gasping for air, despite being on 20 L of oxygen.  We’ve spent the evening trying to decide whether or not to reintubate or not.  They’ve decided she needs the extra support.  

We are hoping that at least one of her chest tubes will come out tomorrow and then she'll really start to feel better, especially as she settles out and adjusts to her new flow and hopefully successfully extubates.  Unfortunately, there's been a fair amount of output from these tubes, so it may not happen.  Each day should be a little better from here on out.  From there, once she is off large volumes of oxygen, we will go to the step-down unit, where mostly, they make sure she can eat and drink well enough and that she's safe to go home.  But that's not anywhere close at the moment.             

We are holding up ok.  We kept ourselves busy yesterday.  We've found leaving the hospital works best for us to keep our mind off of it.  We went to the BCH blood donation center across the street.  I was able to donate some blood.  It felt good to replace some of the blood that we knew she'd be using, especially since I am O+ so most people can receive my blood.  It was a nice morning, so we walked into the city to have some lunch.  Our tradition is to go to Stephanie's on Newbury.  We were hoping they'd have the terrace set up, as it would have been warm enough to eat outside, but it was not.  We had a nice lunch + cocktails then continued our walk.  We walked through the Public Garden then back up Newbury and over to Boylston to see the finish line.  It started to rain as we were walking back, so we hopped on the T and headed  back to the hospital.  We settled into the waiting room to wait it out.  We spent the whole day waiting to exhale, so when Baird finally came out it was a huge relief.   All in all, it was about 11 hours from when we said good-bye until we were able to see her again.  

So yeah, the marathon before the marathon.  Maybe the actual marathon will feel easy after all this.  I do know, that if she is home and on the road to recovery, Boston will be glorious.  

Here we go again....

Well, here we go again.

Tomorrow, Mireya will go for her third open heart surgery.  This is a big one, and I've found myself far more nervous about this one than any of the girls' previous open hearts.  It's a big difference - Hope's surgery and Mireya's first two were when they were newborns.  It is heart-wrenching to turn over your brand new newborn baby.  Beyond describable.  But this is different.  Now she is a little person.  She has a fully developed personality.  She has opinions, likes, dislikes.  She is a funny, little imp of a girl and I can't imagine turning her over, for a procedure that will likely have her waking up in pain.  I'm so terrified she is going to be scared, that it is going to change her somehow, and that I won't be there to protect her.

But it is inevitable.  Just like right before every procedure she has ever had, which now totals at 7 caths, 2 open heart surgeries, and one g-tube surgery, she needs this surgery.  Over the last few weeks, her eating has become poor.  She is breathing harder and harder, her hands and feet are usually purple and cold, she has taken on a bluish tint, and the last few days she has been sleeping a fair bit.  Her O2 levels remain in the 80s, which really surprises me.

All went well at pre-op on Friday.  They did a CT scan so that they could get a 3D image of her heart, to provide her surgeon with a better road map.  Surgery was supposed to be today, but we got bumped until tomorrow.  Originally, they tried to bump us until Friday, but I was not happy with that at all.  We've made a ton of arrangements to make this work.  We've taken off of work, sent Hope and Sanders away and were prepared mentally and emotionally.  TO have to wait another 4 days would have been excruciating.  As it was, the extra day was a bit much for me.

Her surgeon, Dr Baird, is going to go for the full repair.  When we discussed it back in January, we did not think this was going to happen.  Dr Friedman, her cardiologist, seemed to feel pretty strongly at the time that she was not ready for the hole to be closed, so we went into this thinking that they would "only" be replacing the conduit and unifocalizing the last collateral artery and that we'd have to send her back to the OR sometime around 3 or 4 years old to patch up the VSD.  At the time, he thought the pressures in her heart were too high and the closing the VSD could make things worse for her, even be catastrophic.  Once they close it up, they can not unclose it.  So I was pretty surprised at pre-op on Friday when he told me that they had decided to attempt to close the VSD.   They are going to try to do what is called a fenestrated VSD.  This means that they will leave a small, hole in the VSD patch.  This hole, may close up on its own, or it can be closed later on in the cath lab, hopefully avoiding another surgery.  If after attempting to patch it, the pressures are still too high, they will be able to take it down before closing her back up.  I'm nervous about this, but Baird is one of the best and he is confidently aggressive.  This is what I like about him.

I feel like we've been preparing for this forever.  In some respects we have - since Mireya was born, we knew there would be a surgery further down the road.  I think we thought it would be further along.  Since she was born, it has been procedure after procedure.  After her first two surgeries, we were in for a cath every three months - January, March, June, October, January, and now.....  The caths have become sort of routine for us.  I've even worked in the morning of the last two caths.  Surgery feels so much bigger.  We've become familiar with the staff up in the cath lab, which has its own prep and recovery area.  For surgery, we go to a completely different floor.  The pre-op prep area is shared by many departments in the hospital, as is the waiting room, and recovery takes place first in the OR, then up in the CICU, which is where we will see her again.  When the team believes she is ready, they will transport her up there and will be welcomed by a team of specialized nurses.  They will spend an hour tweaking the machines, the meds, etc. before we are allowed in to see her.  Sometime in that time, Baird will be by to tell us how it went, but I suspect we will see Friedman before we see Baird.  He's usually pretty good at finding us.

We will do our usual - wait with her until they tell us it is time to say goodbye, then we will head out of the hospital to kill time.  There will be a lot of time to kill - probably close to 6-8 hours.  We like to go out to lunch and have a cocktail to take the edge off.  Stephanie's on Newbury is where we've gone for 2 out of 3 of the last surgeries.  The liaison will keep us updated on the hour and whenever they do something important, like make the incision or put her on bypass.  That is our plan for tomorrow as well.  After lunch and a little walk, we will head back to the hospital to wait it out.  It will be a long day for sure.

I've had trouble keeping up with the blog since going back to work.  It's been busy, but a good busy.  I've been happy.  I'm hoping to use some of the time in the hospital to update everyone on what we are up to.

The most exciting news is that I will be once again raising funds for Boston Children's Hospital, but this time I will be running the New York City Marathon for the hospital.  If you'd like to help me raise important funds for the hospital, here is the link:
http://fundraise.childrenshospital.org/goto/Crellin
I am obligated to raise $3000, but would like to double that.  I raised over $5000 in 2015 when I ran Boston on the Miles for Miracles team.  I want to go beyond that.  Can you help me raise my minimum by July? 

   

Smooth sailing (delayed post from June)

This post was meant to be posted months ago, as in almost a year ago, but once again, life got away from me.  We have been busy enjoying our girls and a life without doctors' appointments, the way parenting should be.  For a little while, things have been completely "normal" as in other people's normal, not our normal.  Mireya is doing great.  She's been as healthy as a horse and is making big strides, but more on that later.  I feel like I should start with our most recent medical event before I get on with the exciting stuff.



Our most cath admission back in June was a dream.  I can't believe I'm saying dream and admission in the same sentence, but almost everything went right.  When we started this journey with Reya back in November, I expected smoother sailing, mostly because she was bigger and stronger than Hope was when she went for surgery.  I failed to take Mireya's feisty nature and complicated anatomy into account.

I often find myself reflecting upon that first admission, but found myself more reflective during this last cath.  Ironically, for this past admission, during the day we had the same nurse (Kaitlyn) that we had when we were first admitted back in November.  She and I were reminiscing a little bit about how much trouble Reya gave them when we arrived here for that first surgery.  It's been a rocky road, but she really has come far, and this past admission was a great indicator of how much progress she's made.  To put it in the words of her cath doctor, "she's starting to look like a keeper".

He's a character, Dr. Lock.  He's starting to grow on me.  We learned at this most recent cath that he was one of the first doctors to start working on MAPCAs at Boston Children's Hospital back in the 80s, so he is a veteran.  But he's also a man of little words and glass half empty kind of guy, giving you the negative scenarios first.  He talks very fast and doesn't dumb anything down, talking to you like a medical professional.  He blows in and out and doesn't really allow the opportunity for questions.  Chris asked him something and he looked shocked that we were asking him a question.  This was Chris' first encounter with him and we both chuckled after he walked away.  It's kind of one of those "what just happened?" scenarios.  We are able to follow most of what he says, but I always feel like I need a review and clarification, which luckily, Dr Friedman is very good about doing.  Back in March, Dr Lock was the one to tell me Mireya had pneumonia.  After this most recent cath, he walked in and told us her left lung was a mess and her conduit was severely obstructed.  He was able to improve the flow through her conduit and into her left pulmonary artery as well as dilate some of the other vessels as well.  At the end of his very short visit with us, he was finally able to give us the positive - "she's starting to look like a keeper", as in he's finally gotten her to a place where her future looks good.

Our stay for the cath was short and mostly sweet.  We got a decent room.  A window bed with no roommate for the duration of our stay.  Reya's recovery was easy.  The cath was on Tuesday, we came home on Wednesday and by Thursday, you would have had no clue it even happened.  She was a little fussy immediately post-cath, most likely because she was tired and hungry.  She had a pretty decent night's sleep and took two naps while waiting for discharge, which was pretty early.  I even slept pretty well in my pull out chair. Mireya was feeling so well that we went out to Walden Pond to enjoy a beautiful day, two days post-cath (don't worry, she didn't go swimming!).  Hope was more out of sorts than Reya was.
   

The only hiccup we had was with the GI appointment I had cancelled the day before the cath.  When we finished all of our pre-op stuff on Monday, there was a two hour window until her GI appointment.  I asked pre-op to see if they could see us sooner or if they could come see us inpatient.  They said they would catch us inpatient.  Well, I started asking as soon as we got up to the floor after the cath.  They said that they would come up around 11.  11 came and went and then they told me that they would do what I'm asking them to do at our 3 month follow-up.  Funny, because that is the appointment I cancelled.  GI never showed up and weren't returning the NP's (Nurse Practioner) phone calls.  They ended up discharging us and sending over to GI to see if they would do it for us right there.  I got down there, and there was no one to do it, so they booked us an appointment for the following Monday, when we were already scheduled for an appointment with a different department in Waltham.  It was very frustrating as we would have been discharged far earlier and home before lunch had we not waited for GI.  It was especially frustrating given it was the first thing I asked about when we came upstairs.

The cath was on June 6.  We had the GI appointment and ORL (the vocal cord doctor) the following Monday.  We didn't have ANY doctor's appointments between that visit on June 12 and July 10!  That is the longest we have gone without a doctor's appointment since Mireya's diagnosis last MAY.  The GI appointment was simple - it was just a tube change with a nurse practitioner.  She changed out Reya's g-tube, explaining to me how it was done.  I am not able to do it myself yet, they will teach me that at our next follow-up in October, but in an emergency situation, if it were to come out, I would know how to put a new one in, instead of having to rush to the ER at 9PM on a Sunday night like I did back in May.  The simplicity of this appointment made our experience with the GI department the week of the cath even more frustrating.  As a whole, I have not been overly impressed with GI.  I find them disorganized and not at all like cardiology, which is obviously our home base at BCH.  I feel like we are the "away team" when we visit GI, whereas cardiology we are definitely on the "home team".  Even though it is a huge department, I recognize most of the cardiology staff both in Boston and Waltham.  At GI I don't know anyone and the unknown is unsettling.   Up until a month or two ago, I didn't even know who our GI doctor was...lol.  Fortunately, we only have to deal with them every few months.

Our ORL visit was interesting.  The doctor we see, Dr Lee, is young and the best I can describe him is "very clinical".  He is nice, to me and my kids, but not overly warm and fuzzy.  Back in February, he would not do a scope until he heard back from Dr Friedman that it was safe.  He was clearly afraid of my heart baby, especially because I see him Waltham, far away from the safety of the hospital.   This visit was a follow-up from our visit back in February, to check to see if her vocal cord was still compromised.  This is done by scoping her throat with a camera through her nose.  Its interesting to watch and I was able to get the answer myself right away.  The answer is that her left cord is still not completely functioning.  When she gasped for air (because she was screaming), we saw some movement, but in general it is immobile.  But the most interesting part of this visit was not what we went in for.  Upon doing the scope, he noticed that she had either swallowed or inhaled a blade of grass (she had been eating grass by the handful at a birthday party on Saturday) and it was stuck in her nasal cavity.  He was insistent that he had to get it out because he was afraid it would get into her lungs and cause some problems.  He tried going in with some needle nose tweezers.  She didn't much care for that...lol.  So he had to strap her down in a straight jacket attached to a board.  It was pretty traumatic.  But he was able to get it.  Thank God, because if he hadn't, we would have been sent to the OR.  Thanks, but no thanks.    

We had our one month post cath follow-up with cardiology in July.  Everyone remarked at how great she looked.  Her sats were good, her weight is up and overall, a positive visit.  Next cath is set for October 20.  We have had very few appointments since - just the feeding specialist and the neurodevelopmental team.  The feeding specialist thought she was doing great.  Her feeding skills are caught up to age appropriate skills but we do need to work on motivation and stamina.  She was cleared to try thin liquids and so far, she is doing great taking milk from a straw cup!  The neurologist was so impressed by how far she has come.  Looking at the notes over the last few months, she expected a skinny sickly baby that was far behind on her milestones.  Instead, she saw a sort of chunky, happy baby who is rapidly catching up.  She is still slightly behind in her motor skills, but doing great from a cognitive and verbal perspective.  

So those are the most recent medical updates.  I'd say since she kicked the cold she had back in May, it has been pretty smooth sailing.  Smooth sailing and a life free of doctor's appointments allows for a lot of forward progress.   So now for the exciting, regular baby stuff!

Most exciting - she's eating like a champ!  Ever since discovering sand on the beach in Ocean City on Memorial Day weekend, she has been eating more and more.  Her weight gain has been fantastic and she is up to 9% on the charts.  I know, that sounds low, but when we went in for the first surgery she was 3% and when we brought her home in December, at 8lbs3oz, she wasn't anywhere near the charts.  Hope is still only 4-5%.  Chris and I were both small kids.  I don't expect her to be big.  We had a little slump around the cath, but things are so good now that we have dropped two of her tube feeds.  This gives us a lot more freedom and we no longer need to lug the feeding pump unless we're going to be out all day.  At 10 months, she weighed 15lbs10oz, and was about the same as Hope did at the same age.  Now, at 11 months, she is up to 16lbs5oz.    Anyway, I started to feel pretty confident that between nursing and eating solids, she was getting the calories she needed from that extra feed.   Her feeds run every 5-6 hours now, so it is also allowing for her to get hungry in between feeds, which gives her more motivation to eat.  Since we dropped the feeds, she has been eating more and even drinking from a straw cup.   I'm starting to feel optimistic for being mostly off daytime feeds when I go back to work.  She may require one daytime feed, but my hope is that it won't require me to lug the pump to daycare every day.  She will also hopefully be drinking cow's milk by then, so if all goes well, it will make packing for daycare relatively low maintenance.  So far, she has continued to gain even with the dropped feeds, so that's a good sign.

Another exciting update - she's on the move!  Just like Hope, she has chosen butt scooting as her method of movement.  She just started moving at the end of July, so she is about a month behind Hope, but she's already trying to figure out crawling and possibly even trying to figure out how to pull up, so I think she's going to catch up fast.  And boy is she fast.  She has been so proud of herself.  The first day she was on the move, she scooted all over the house checking out every last corner  and pulling out every last toy.  She's very busy and into everything.

She is making a ton of vocalizations, intonation and all.  She has whole conversations with herself and with us.  I remember Hope talking a lot, but I don't remember her having these types on conversations this young.  It is pretty hilarious.  She has angry noises where she sounds like she's cursing us out and happy joyful noises.  She also has a few words with meaning attached - "mama" "dada" "bye" and I could swear she's saying something for Sanders.

Finally, she has her bottom two teeth with 3 or 4 more popping through up top.  We discovered them on the 4th of July and just noticed the others this past week.  Once again, she is behind Hope on this, by about a month.  It's funny, it has completely changed how she "talks" and where she puts her tongue.  She's like a different kid since we discovered the teeth.

Overall, she is a happy, funny baby.  She is a character.  She knows how to wave "hi" and "bye" and is starting to clap.  When we were in for the cath, she had a chest x-ray immediately post-cath.  This is one of her least favorite activities at the hospital.  After we picked her up to go back up to our room, she immediately stopped crying and started waving "bye", kind of like, see you later, I'm out of here!  She "dances" by swaying back and forth.  She gives kisses.  She loves stuffed toys, especially her bunny.  She already covets Hope's dolls, hugging and kissing them.  She still adores her big sister and Sanders.  But possibly my favorite thing about her is her snuggles.  Every time I pick her up, she snuggles in for a good hug and sometimes a kiss.  She won't snuggle for a long time, and doesn't really like to cuddle or sleep in our arms, or even sit in our laps for a long time, but she gives the best hugs when you pick her up.

I completely adore her (obviously) in a completely different way than I adore Hope.  Its funny how things come into your life at just the right time.  Hope is a fierce, independent fighter.  But she's also happy go lucky and a breath of fresh air that came at a time when we were struggling for air.  Reya is the storm along with the subsequent rainbow that came after the breath of fresh air.  She came into the world much more quickly (should have known then), and has had a much longer and harder road, but somehow she is silly, happy, and more fun than anything I've ever known.  I don't know that I could have handled the stress I felt from Reya's journey without having Hope first.  Hope has continued to be my breath of air, but Reya is the comic relief (even though she is usually the one causing all the stress!).  Sometimes, I think she's like a hurricane, but that's not a positive enough analogy since nothing good comes from a hurricane.  She's always causing trouble and wreaking havoc.  She has to touch everything.  Then you look at her, and you just have to smile.  I'm terrified of when she starts really moving.      

Life is good right now.  Moving way too fast, but really good.