Lucy's Obituary

Lucy Blair Hutchings

Practically Perfect in Every Way

Born July 20, 2010 to Charles and Eliza Hutchings. Died October 13, 2011.

Lucy loved her family, especially her brother, Jack, and her twin sister, Hazel. She is survived by her parents, grandparents Blair and Laurie Hutchings and McKay and Pamela Platt, and great grandparents Juan and Darlena Hutchings and Patricia Woodbury. She will be greatly missed by her aunts, uncles and cousins, and her Rebecca.

Lucy was born with a heart defect called Tetralogy of Fallot. She endured numerous surgeries and procedures, most of which took place in her hometown of Kansas City. Our daughter spent her last months in the Cardiac ICU at Primary Children’s Medical Center. She learned that making others happy made her happy, and she endured every burden with her unforgettable smile.

She had a great love for the nurses and doctors that took care of her, and everyone that would stop in to say hello. She was loved by everyone who knew her, and even by strangers who were never able to meet her.

Lucy taught us so much in her short life. She showed us how to be patient and long-suffering through our afflictions. She taught us to show kindness to everyone, and how to forgive those that cause us pain.

Lucy never walked and barely crawled, but she loved to dance to her favorite shows: Mary Poppins, Tangled, and her sign language videos.

Although her death was completely unexpected and unwelcome, it was her time, and we know Our Heavenly Father wanted her back. She was feisty, and could have fought on if she was supposed to. We always knew her existence in this life was pending the will of Our Father. We are only too grateful for the opportunity to know her while she was here. We love you, Lucy! May angels lead you in.

Funeral services will be held at 11:00 am on Wednesday, October 19, 2011 at Cascade 4th ward chapel, 1051 E 200 N, Orem. A viewing will be held the night before at Walker Funeral Home, 646 East 800 North in Orem from 6 to 8:00 pm. Condolences may be sent to the family at www.walkerfamilymortuary.com.

Rearranging the furniture

I was about to write a post (this is Chuck, Lucy's dad), when the nurse suggested we rearrange the furniture. I thought he was joking (yes, he), but he was quite serious, and quite excited about it. So I consented, and my new location by the window has inspired me to write an optimistic post.

I haven't felt too optimistic today. I am frustrated that Lucy is in pain. I am frustrated that she has to remain sedated for an unknown amount of time, despite her constant efforts to fight the drugs and wake up. I am frustrated that the surgeon wasn't able to fix her problem in one surgery. I am frustrated that they don't know what her heart needs to function normally.

But I am hopeful that we will all survive this month. Lucy is pink. She is starting to get rid of some of the excess fluid. Today was a rough day for her, but the calmness of the night shift has been therapeutic, and she requires fewer drugs to keep her calm.

Sometimes all we need is time and a new point of view to see the situation a little better.

(And thus ends my attempt to be as profound as Eliza).

Goodbye PICU!

Lucy has had a rough day today. Eliza says she's been prodded and poked all day. On top of that, she decided she was too lazy to eat all of her bottle, too. So the feeding tube is back in.
She is opening her eyes more, but they look so sad. I'm hoping to cheer her up with some Backyardigans therapy. That's not quite working. Plan B involves oxycodone and some awesome dance moves. We'll see which one has the greatest effect.
We've officially moved out of the PICU and onto the floor. Compared to the PICU, this is deluxe! We have our own tv with DVD player, a BED for mom/dad/gammy to sleep in at nights (it's my turn tonight, so this is good timing!), and permission to eat and use cell phones. We still don't know how long we'll be here, but Lucy is definitely getting closer to being ready.
She had an echocardiogram today. They told Eliza the reason for her oxygen saturations being so much lower than expected. It does involve blood mixing somewhere (it wasn't clear to Eliza where), but it should resolve with time and probably a trip to the cath lab. But they won't take her back to the cath lab for a few more months.
So this isn't the end.

This has obviously been an extremely hard time for Eliza and I. But in spite of the difficulty, we have felt relief knowing that there are friends and family, and complete strangers, praying and fasting for Lucy and our little family. We appreciate it, and can feel and see the effects of those prayers.
We are so grateful to Pam (Eliza's mom) for practically moving out to Kansas City when the girls were born. She insists on being here for all the big stuff, and she's usually here for all the small stuff, too. And she still takes one of the night shifts whenever she's here (in fact, I just found out that she is going to sleep at the hospital tonight. It really is a coveted job now that we're in the Hilton)!
And with Gammy being in Missouri all the time, that means she's not in Utah with her hubby and other kiddies. We appreciate their Gammy sacrifice.

And last week would have been almost impossible without my parents here watching the kids and cleaning the house daily. Thank you!

Well, a combination of Backyardigans and oxycodone put Lucy to sleep. I guess the dance moves will have to wait until later...

POD 6

POD (post op day) 6. It's the sixth day after the surgery. And even though Lucy's recovery is perhaps going a little slower than we hoped, it's still going. Slow progress is still progress. There haven't been too many set backs. Right now she has a portion of her right lung that is collapsed, aka atelectasis. It is probably due to the surgeon having to move it out of the way so he could have more access to her heart. She has a respiratory therapist coming every 2-4 hours to apply positive pressure to her lungs to help inflate the collapsed portion. As uncomfortable as it would seem to have a breathing mask smashed up against her face with oxygen being pushed into her lungs, Lucy takes these treatments like a champ! She actually slept through the last two.
As a natural consequence of the surgery, Lucy's oxygen saturation should be at normal levels -- 95-100%. However they are at 90% today, and have been in the 70s and 80s in the previous couple of days. The doctors aren't quite sure the reason for this discrepancy, but suspect the area of atelectasis is to blame. They may perform an echocardiogram in the next day or two to rule out an area of blood mixing, but I think (and hope!) it will I prove as soon as her lungs clear up.
Can I say how awesome she is at eating?! One of our concerns was how long after the surgery would she need to be on the feeding tube. The way things are looking now, she won't be on it at all! (I hope I don't jinx it...)
Technology is amazing. Not only is my baby girl still alive after 2 open heart surgeries, her vitals being monitored every second, and imaging being performed daily to assess her progress, but I am able to write this post with her in my arms with an app on my iPad. Awesome!

Here is one of my favorite pictures of Eliza and Lucy from this hospital stay:

Helmets, NG tubes and MRI's oh my

Yesterday was a busy day. We had a cardiologist appointment for Lucy and a neuro-surgery appointment for Hazel. At Lucy's appointment we learned that her oxygen saturation levels were really good at 88%. They'll probably do surgery when her levels drop into the 70s. As she outgrows her shunt her ox sats will drop. We also learned that she still isn't growing enough despite increasing her calories in her formula. Lucy is going to be admitted to the hospital on Friday so they can start her on a NG tube and teach us how to do it. Lucy might also need an MRI while we are there. After Lucy's last surgery she was put on ECMO for a short time. Because she was taken off so quickly no one did the usual testing that is done after coming off ECMO. They are starting to think now that maybe they should take an MRI to make sure things are looking okay. If they do this she'll have to be sedated and intubated. I'm not really feeling up for any of this.

Hazel's appointment went great. Her head looked great. I think these appointments with neuro are more for their benefit than for our. They like to take lots of pictures and document her progress. Today we're going in for another helmet fitting. This will be her 3rd helmet! I can hardly believe how fast time is going.

Lucy laughs

Here Mom

Hoo's the cutest?

Lucy's appointment

Lucy had her cardiologist appointment today. She weighed 11 lbs. 2 oz. It was enough of a weight gain for her to avoid having a feeding tube. She's been on a high calorie diet for the last month and the doctor told us to increase it even more. We gotta get this girl fat! The most important thing we found out is that Lucy will probably be having her next surgery in April and she'll need another cardiac catheterization before that. Good job Lulu

This weeks appointments

Monday- Took Lulu in to the Pediatrician and found out she's gained 9 oz. since Dec. 16. We are hoping that it's enough for her to avoid the NG tube. She now weighs 10lbs 14oz. She's only gained 1 lbs. in the last month.

Thursday- Hazel goes in to make sure her helmet is fitting and to make sure her head is shaping the way it should. It's not and it's not. Her helmet is way too tight and her head is starting to look like a rubix cube again. Is that spelled right? Hazel has been helmetless for the last day because it looked like it hurt. I hope they can stretch it out because she's not due for another helmet for a couple of months.

Friday- This is the big appointment for the week. We meet with Lucy's cardiologist. Her last appointment was the middle of Dec. and that's when he put her on a 26 cal diet (20 is normal). He told us then that if she didn't gain enough weight she'd need to be put on an NG tube. If we do that she'll need to go back to the hospital for awhile. He might also schedule another cardiac cath. She's had two of these already. That would also require a little hospital time. ugg.

The weird thing is as Lucy gets bigger she's going to get sicker because she'll outgrow her shunt. They will only do Lucy's surgery once she is sick enough. So we have to get Lucy well enough to become sick so that she can get better. Follow? That's ok.

In other news Chuck is doing his Pediatric rotation and thinks that he might to do his residency in that. He's kinda been around babies a lot lately.

2010

One year ago Chuck and I were driving home from visiting family in Utah. We had a double stroller in the back of our car that my sister gave us. We knew I was pregnant but had not yet been to an ob. "That thing is going to jinx us," Chuck said. During that Christmas break I had also had a dream that I had twins. It terrified me. I wish I remembered it detail. When I was pregnant with Jack I told Chuck that if we ever had twin girls I wanted to name them Blair and McKay after our dads. On January 9th of last year, we went to dinner with a friend of ours. It was the night before we had our first ultrasound. We made jokes about there being twins. An hour before my doctor's appointment the next day I called my mom. I told her I'd be glad when this appointment was over so I'd know there was only one. She laughed and told me, "If you had twins I'll hire you a nanny." When I was probably about 12 I remember a conversation with my mother and my two older sisters. We were talking about my brother who had died of hypo-plastic left heart syndrome. My mom said something about how one of us could have a child with a heart defect. I remember thinking then that it would be me. A few months before I got pregnant I knew something big was about to happen in our lives.

This past year has been the most pivotal year of my life. I think Chuck's as well. It has been the hardest year on our marriage but I know we are more committed to each other than ever. I love him and all my family for the sacrifices they have made for us. I feel a closer bond to my husband, my parents, my siblings, my in-laws and my extended family than I ever have before. I have felt people's prayers in a way that is beyond explanation. I can feel when they are strongest because I experience strength that is not my own. I would hope everyone could experience the power of prayer in this way. My testimony has been tried and tested. Some of beliefs have been shattered and rebuilt. I see myself and my life differently. This year I've learned to look for the Lord's hand in our life and I've realized my faith isn't as strong as it needs to be.

The Lord has done so much to prepare us for the trials we've had this year. When there seemed to be no hope at times, a way was provided. Sometimes we are kept in the dark for a reason. I know there is purpose to the events in my life.

2010 in photo recap: no particular order because I have no idea what I'm doing

Chuck, Lucy and Jack...Hazel never made it into her costume. We only lasted about 7 minutes at our ward Halloween party before we had to leave.

After the babies were born.
My little bro came home from his mission. A highlight of the year. I was so sad I couldn't be there.
Blessing day. Babies with their namesakes.
Hazel's surgery.
Lulu's surgery.
Gammy and Hazel.
Jack spent a lot of this year naked. He loves his "saur" more than anything.
One year ago.
38 weeks pregnant. Happy Birthday girls!
We have so many pictures of Chuck asleep with babies.
Welcome to the world Hazel.
Deathly white. I know.
Here we come 2011. I hope you are ready for us!

Nakie Babies

Hey sis, give me your hand.

I want to eat your hand.
Get way from me crazy!
Geez, what's the big deal?

Everyone is always asking me if the babies love sleeping by each other. If they entertain each other and if they talk in their own little language to each other. The answer would be, "no." They mostly just like to bug the other. They are way more interested in everyone else than each other.

I don't want to go back to Missouri yet but being away from her doctors has been stressful. We have an appointment on Jan. 7. We think she's been gaining good weight but we aren't sure what the expectation for her is. We're really hoping to avoid a feeding tube.

I'll be honest. I wish I could skip next year and jump ahead to 2012. It's going to be really rough for our family. I'm lucky to have such a great support system. I know I couldn't do any of this without them. When Lucy came home at 6 days old she was almost completely asymptomatic. Their was very little difference between the way we treated Lucy and Hazel. As Hazel has gotten older the easier she seems to get but the opposite seems true of Lucy. She's difficult to console, difficult to put to sleep and when we're just too worn out, we still can't let her fuss. I'm definitely not looking forward to her next surgery but I really want it done so we can all just move on with life. I know it's not that simple but some days that's all I can hope for

Update from Utah

I'm just sitting here in Utah with Lucy on my lap. We're staying at my parent's house while they are in Mexico with some of my family. Jack's been having a blast playing in the snow and hanging out with cousins. The girls both have colds but are doing okay. We're glad to be able to spread out in a bigger house but even here we're getting cabin fever. I would really just like to take all of my kids out somewhere.

Before we left Hazel got a new helmet. We bling-ed it out for christmas. Lucy also met with the cardiologist before we left. He said that she's fallen off the growth chart for weight. If she doesn't chunk up before Jan. 7 they might put her on a feeding tube. She's now on a high calorie formula so we hope that helps pack on the pounds. In better news her oxygen saturation looked great. This is really important for those numbers to stay high.

I have pictures I need to post but I'll do that later.

Lucy GaGa

We made a little dance video of Lucy before her surgery. She's not quite up to dancing yet but she's getting there.

LuLu

In utero Lucy was baby A. Because I had a C-section, Hazel was pulled out first and Lucy became baby B. I think she may be stepping aside for her sister a lot. She is my sweetest child. I adore her. If it weren't for her heart she'd be my easiest child. She is such a smiley baby which is such a blessing to us. She lights up the room. Of all my children she is the most like Chuck.

Lucy and Hazel have matching dimples on their right cheeks and the both have crazy hairlines. Their cries are really difficult to tell apart. They are more amused by their brother than they are with each other but they love holding hands. Having identical twins is nothing like I expected.

When I became a mother I went through a bit of a crisis. I didn't know who I was anymore. It was really difficult adjusting to life at home. I felt like being a mom wasn't enough. I felt unfulfilled. I am convinced that there is nothing I could be doing that is more important than what I'm doing right now. My children have shown me my weaknesses and shown me my strengths.

Our little elves

Lucy's scar is healing up really well. She's almost 4 weeks post-op which means we'll be able to hold her normally again. It's taking her along time to gain her strength back but she's slowly doing better and better.

Hazel's scars are barely noticeable anymore. Our little girls are doing really good.

A note about Lu

Dad, this post is mostly for you because I know you'll ask. After much wailing and nashing of teeth we were able to see Lucy's cardiologist today. I went in there ready to fight to make sure my daughter's issues were listened to but there was no need. I always forget how much I like her doctor and how good he is. She had an echo done to make sure the shunt was working. Lucy has not been doing as well as we expected. She's not eating and her ox sats are dropping faster than they should be among other things. In my gut I feel like something just isn't right. According to the echo everything looked great. She had some leakage around her valves while we were in the hospital that has actually improved. The asked us to go get her blood work done. If her blood work comes back abnormal they may readmit her for a bit. I'm almost hoping for that because the alternative may be something more serious. The echo can't see narrowing of where the sutures were stitched on. If this is the case they may want to do another cardiac cath and balloon dilation to open them up. I asked the doctor to give me some idea of when we could expect her full repair. It wasn't the answer I wanted. He began rambling about all the things that might go wrong about extra surgeries she may need and I felt sick. They weren't just things that might go wrong, they were things that could likely go wrong. Back in May when we found out about Lucy's Tetralogy we were told she'd need two surgeries. It was still scary back then but at least it wasn't so complicated. We really have no idea what to expect from Lucy. I am so grateful for my babies. I am so grateful for my husband who does a far better job mothering than I'll ever do. Even though I have my days where all I can do is feel sorry for myself, I can't deny the miracles I've witnessed this year. The Lord always seems to give us even more than he takes away.

A word from Lulu

Don't I look fabulous! They took me off CPAP (that's the mask I had on to breathe). I love my anxiety meds, they help me chill-ax. I'm doing good but I'm still not ready to smile or look anyone in the eye. Mom accidently pulled out my IV today. Now she's covered in blood. Daddy found out today that he can take more time off to be with me. We're all very grateful. Mom can hardly believe how wonderful his school and the air force have been.

I'm still in the ICU and might be here a couple more days. I miss Jack and Hazel and can't wait to go home. Thanks everyone! I love you all.