Lucy comes home

Lucy came home last Tuesday. We are so glad to be all together again. As you can see Jack and Hazel were very happy to have their sissy home. We've been staying super busy with doctors appointments and getting ready for Utah.
Lucy is doing so much better than we expected and we are so proud of everything she's overcome. We still need to stay on top of her pain meds and be gentle but overall she's doing pretty good.





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2 weeks later

Right now I'm sitting by Lucy watching the Backyardigans in her room. I've been listening to her oxygen saturation monitor goes off non stop for the last few hours. Is it bad that I hit the silence button?
Her oxygen sats should be 100 percent since she had her "full repair," but they actually haven't really improved at all. She typically hangs out around 80-85 percent. Sometimes she'll go higher or lower but the low eighties are most typical.
I've heard probably 5 different explanations for this. My personal favorite was, " she's probably just cold." You learn who the dummies are pretty fast in the hospital. It looks like over time they will improve a little on their own and she will also need a cardiac cath done pretty soon to take care of some of the other problems.
Even though Lucy's sats aren't much improved she's already eating better. She pretty much hasn't eaten anything by mouth since March. Little tastes here or there. Now she is eating one or two ounces at every meal! We are hoping to be able to ditch the feeding tube soon.
We are supposed to be in Utah in 10 days. I know everyone thinks we are crazy. We are. But you have to remember, we thought Lucy was going to have this surgery two months ago. Chuck is about to start his 4th year of medical school. My mother has lived in an apartment across the street for almost a year. I really can't ask her to stay with me especially when Chuck won't even be here. So that's why we're going to Utah so soon after Lucy's surgery. Gammy and Lucy will be flying to Utah while Chuck and I drive with Jack and Hazel.
We have a lot to juggle before we go. I'm stressed.
Oh, Lucy and Hazel are 11 months old today. What happened to my babies?

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Happy Father's Day!

I have the best Daddy ever! He spent the night with me. While dads all over the place were sleeping in, he got up with me at 5:30 for a chest x-ray. He didn't complain once. I was able to see Hazey and Jack for a few minutes today. But I quickly pooped out after they got here on Momma's chest. I'm waiting for the Gamster to get here so mom can spend some time with dad on father's day. I get to see Hazel again tomorrow since she has an appointment with all of our favorite Nigerian neuro surgeon.



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Waiting for news...

Well I'm back at the hospital with Lucy. Eliza stayed with her last night, and reports that she didn't sleep well. Poor thing needs to sleep if she's ever going to recover.
I've been here a couple of hours, and all I can report is Lucy is cute and looks like a chub! She is still uncomfortable and doesn't like all the tubes and cords attached to her, but I found a way to get her to sleep.



It was meant to be an escape pod, but she fell asleep before we got anywhere. She refuses to lay down in her own crib. Bad things happen in her crib. Smart girl.
Did we ever say anything about her lungs? Well, she has chest tubes in place to drain fluid as it accumulates around her heart. They were placed at the end of her surgery. Since these tubes are next to her lungs, they are probably causing a local inflammatory reaction, and therefore not helping out (or even causing) her lung problems. So they ripped one out yesterday (literally ripped it out, and fast. It was gross) and while her sats haven't improved, they don't seem as worried as before. Oh, except for the fact that they cultured some strep from her left lung base. She's on even more antibiotics. Whatever. They are thinking about taking the second out tomorrow.
But they anticipate a release early next week. Yeah! Just in time to come back for her cardiology appointment on Wednesday. Busy girl.

While Eliza spent the night at the hospital, Jack and I had a slumber party in the family room. In the morning we had German pancakes. Jack really likes his with powdered sugar.





What's sad about this is that it happened after Eliza got home. Two parents, two kids, one unsupervised mess. That seems to be how it always goes at our house. At least he's using a fork. I'm so proud.

Day 12

We are back on the floor and out of the ICU. They past couple of days have been super stressful. I'm glad Chuck has taken up blogging again so you wouldn't have to hear my hysterics. Lucy is doing a lot better today than she has been. Her pain this week has been pretty bad. She screams whenever someone comes in the room. Yesterday, she kept looking at us like we were the enemy. I hated it. She seems a little more comforted by us today. The girl has been so traumatized! I had intended to write more but I'm too tired. I'll try to update more tomorrow.











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In and out

Lucy and I are currently in the PICU. She had a quick procedure done to look inside her lungs. She had to be sedated and intubated for the event. She came off of it fairly quickly and was extubated right away.

She is sick of being here, and getting grumpy. You should see how she treats the nurses.
And respiratory therapists.
And doctors.
And aids.
And mom.

She is tired and cranky, and sore, and doesn't want to be messed with. Understandable.

It's about 50 degrees in here, and I'm wearing shorts and a t-shirt. I'm this close to stealing Lucy's blanky...

Post-op day 10. And I was predicting we would leave 6 days ago. I'm a bit too optimistic sometimes.

Ready for a new day

Waiting for rounds together. What will they say?

***No changes. Boo.

***Just kidding, they're going to take her back to the PICU to do a bronchoscopy. Hopefully they'll be able to see if something is blocking one of the lobes of her lung, and remove it. Goodbye luxury condo, for now.

Our Guardian

(View from Lucy's window)
It would be cooler if he was an owl or an eagle, or even a dove, but we'll take him.
Lucy seems to be in a bit of a limbo. She isn't getting much better, but she's not really getting worse. She still has her drains in that drain the extra fluid from the operation site. She is still getting oxygen. She is still in a lot of pain.
But she almost smiled while watching Tangled.

We'll probably be here through the weekend. (At least we're in the penthouse suite!)

Can't wait

To see this scene again

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:

Day four

Well I'd better make a quick update. My mom has been sleeping in the room with Lucy at night and I've been staying in the Ronald McDonald House. Last night there were a lot of critical cases and we live so close so I decided to go home. When I got back this morning my mom said that she'd done great through the night and started initiating breathing so they were going to get her off the ventilator today and maybe get her moved to the floor by tomorrow. Well the doctors just came and rounded. In these teaching hospitals it's such a huge group that comes by. Maybe 10 doctors, residents and nurse practitioners. Anyway the intensive care doctor said she was having some problems with her lungs and wasn't really doing as great as we'd been led to believe. She's still OK but things are just moving slow. He said maybe off the ventilator tomorrow but more likely on Saturday or Sunday. She's starting to move a lot more because they are weaning her off her happy drugs. She hasn't made any sounds or opened her eyes yet but she will respond to touch or sound. She restrained so she can pull out the ventilator but she's been fighting it a little. I'm ready to go home but really I'm ok with them moving slow. Last time we were here she was sent home too early and screamed for a week straight once we got home. Her oxygen sats aren't as high as I thought they'd be. I guess I had unrealistic expectations but they are barely better than they were pre surgery and she's on oxygen now. I asked the docs today about it. They said they didn't really know where they were going to level out at. They might not get better until the collateral arteries are taken care of. Hercollateralsare those arteries that aren't supposed to be there. Often when a baby has pulmonaryatresia, arteries that aren't supposed to be there will form to compensate. Lucy's collateralswere the reason she did so well after she was born. If she hadn't had them she would've had surgery immediately after birth. Now Lucy doesn't really need them anymore and they may become problematic. Luckily for her they can go into the cath lab and coil them off instead of opening her back up. She's already had three cardiac caths but even though she still undergoesanesthesia, it's much less invasive than surgery.

They did some crazy stuff to her heart. Lucy's biggest problem with her heart was her pulmonary stenosis (that is the narrowing of her pulmonary artery). Hers was so narrowed that a lot of doctors just refer to it as pulmonary atresia(that's where the artery is completely closed off or missing. They were planning on removing the narrowed section of her pulmonary artery and replace it with a human donors. When they got in there they were able to save her artery and place the human donors next to it. The grandpas have been referring to it as a double barreled shotgun. The idea is that hopefully her real artery will keep growing so that she doesn't need replacements her whole life.

Wow, if you made it through all of that you're a trooper.

Lucy's recap

Hi everyone! It's me Lucy. I thought I ought to let everyone know how I'm doing and include some darling pics of myself just so you'd believe me.

This was me just before surgery. I was pretty pooped from waking up so early. And no...that is not my mother breastfeeding me. She's lame and never did that with us kids.

This is me day one and doing great.
Lots of drugs keep a girl happy.
This is me day two. I feel like a sausage. You can't really tell but I'm HUGE! My skin is pretty tight.

I'm doing good. There's a lot to balance right now and it's a little stressful but nothing we can't handle. I'm still totally sedated and probably will be for another day. I'll probably come off the ventilator on Thursday. I still haven't peed. I'm working on that. I'm also having a few other little problems: low oxygen sats, low blood pressure and irregular heart rhythms but that is to be expected. After all I just had my sternum broken and heart sliced open. I'm so tough! Mom has a feeling tomorrow might get a little rough but I'm ready.

Lucy's Big Day!

I am grateful for prayer. I am grateful for people who care enough to take a moment and think of our daughter Lucy. This hard been a difficult year for us but we know we are very lucky. We have had so many prayers coming our way. Most of us don't get that through our trials. Most of the time we suffer in silence while the world around us is oblivious to our pain. I wish that everyone could feel the warm embrace that comes when so much love and focus is spent in prayer. I know that even at our loneliest, our Savior knows us and loves us and has walked in our shoes. He can compensate for those times when no one knows to pray.
I've found myself thinking a lot about trials this year and have come out with the testimony that they can always be a tool to bring us closer to our Heavenly Father.
A lot of people have said to me, "a least she won't remember this." It's true Lucy won't remember how hard this year was, but I know it will change her forever. I don't think Heavenly Father gives us these trials for kicks. They always prepare us for something bigger.
Sometimes we look at other people and think of how easy they have it. How if they knew how rough I had it, they couldn't possibly have anything to whine about. Or sometimes we see others and think, I could never do what they are doing. I know I have been guilty of both.
I believe we are all on a path in this life. We don't get a pass on hard stuff. We can't expect great blessings without some work on our part. I need. to stop comparing my trials with others. This is being drilled into me. It might take my whole life to really get it but I hope one day I can. I try to remember that only my Heavenly Father knows what I need. Sometimes we forget that what is hard for one may not be for another. When I had Jack I was so depressed and lonely. Looking at it now it seems so easy, but it wasn't. It was a really really difficult thing for me. We just don't know.
I heard that Lucy was mentioned in the sacrament meeting prayer in my old ward. The byu ward that my dad is bishop of also mentioned Lucy on Sunday. I know so many people prayed for her and fasted for her. Her name was taken to multiple temples. All of this has meant so much to us. I think a miracle is seeing the hand of God in our life and I've seen it today and countless times this year.
Today was so much better than I could have expected. We were bracing ourselves all morning. Her first surgery was the worst day of my life. Today was much better. We still have a few bumpy days ahead but it will be ok. They we able to do some crazy things with her heart. I'll try to post some pictures soon. She looks good. They'll start waking her up tomorrow and then the real work begins.
Thanks again everyone.

A word from Lulu

Hi guys! We're all getting ready for my surgery early Monday morning. Mom and Dad are nervous but we know a lot of people are praying for me. Surgery starts at 7a.m. and should last 5 or 6 hours. They are going to fix my main pulmonary artery and valve by replacing it with an animal artery and valve. Then they are going to use one of my collateral arteries (those are the arteries that grew to compensate for my narrowed pulmonary arteries) and patch my left pulmonary arteries with it. Lastly they will patch my VSD (the hole in my heart). The muscle build-up in my heart should correct itself once my heart is corrected. I'm so excited to be getting my heart repaired. I'm going to be able to keep up with my sissy! Sometimes I get so mad when I see Jack and Hazel playing and I just can't keep up. If everything goes well I should be in the hospital about a week. I can't be picked up under my arms for 6 weeks. Gammy is going to fly with me to Utah at the end of June so I don't have to drive with the rest of my family. I'm one lucky little girl!

dad and hazel

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When they think we're not listening...

Overheard while with Hazel.

"Look at that motorcycling baby!"

"Alien baby!"

Two little kids:

Younger sibling: "Mom, does that baby ride a bike."

Older sibling: "No, probably a scooter."

Little boy: "Dad why is that baby wearing a hat?"

Dad: "Some babies just like to wear hats okay."

"Oh your little girl is ready to play powderpuff!"

One little girl looked at Hazel in the doctor's office and started crying. After a couple of minutes I realized she was crying because she felt bad for her. Weird but cute.