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.

Thanksgiving

A few things I'm grateful for....

That my son calls his sisters Woosin and Heyhole.

That Chuck's school didn't make us move to Detroit.

That I was able to see Harry Potter despite all the craziness going on here.

For two succsessful surgeries.

For all the kindness and support people have shown our family.

Magic erasers.

Yogurtini.

That we're totally awesome at propping bottles now.

That Hazel isn't going to look totally football-headed the rest of her life.

Cute baby socks.

Rebecca.

That one day Lucy will be mostly "fixed."

My Mama(who I have to call Gammy, so that Jack doesn't call her Momma).

For ALL of our family.

Cheap rent.

Quiet neighbors.

That we are totally going to buy our pre-cooked turkey this year from Oklahoma Joes (the best BBQ place ever!)

Hope you all have a wonderful thanksgiving!

I'm pretty sure this has been the longest month of my life. I'm glad it is almost over. If I sound super grumpy, it is because I am. I'm just getting over the flu. Good thing we got our flu shots this year. Jack was sick on Wednesday with the flu. He was sick again on Friday after eating his own poo. Gross. I'm just praying the babies don't get sick. Lucy would need to be admitted if she did. Speaking of Lucy, that girl is turning my hair gray. That poor girl is just not herself. When we came home from the hospital she screamed for about a week straight. She still screams way more than is normal. Her chest is contracting and she also isn't eating very well. Today we (well my mom) began calling doctors to see if we could get someone to see her. I hate this process. So first we called the cardiac clinic. They told my mom to call the cardiac nurses hotline. They said this was an issue for our pediatrician. When we called the Pediatrician's office they told us to take her straight to the emergency room. Yeah right. If we were to go to the emergency room we'd have to wait hours with a bunch of sick kids just to be told, everything looks fine, follow up with your cardiologist in 2 weeks. Blurg!

The last day we were in the hospital I had a small meltdown when I realized Lucy's cardiologist wouldn't be coming by to talk to us before she left. I had been waiting all week to ask him questions and our follow up with him wasn't scheduled until Dec. 13. As of now we don't really know when to expect anything. We're not sure when she'll need her next cardiac cath or her next surgery. It's hard to see Hazel so bubbly and happy and know that Lucy won't be like that for awhile.

We are home!

Lucy was able to come home yesterday afternoon. It was amazing how quickly things progressed towards the end of her stay. The day before we went home we were told she might need a total of 4-5 more days. They ultimately decided there was nothing they were doing at the hospital that we couldn't do for her at home.

Even though yesterday should have been such a good day, I had a really difficult time. I had been waiting for her cardiologist all week to come and talk to us. When the nurse told me that Lucy didn't have an appointment until the middle of next month I panicked. I lost it and began bawling. A nurse practitioner came in and said, "I am a wealth of knowledge. Anything you need to know I can answer." She was wrong. She didn't know anything. One of my biggest questions was about her next surgery. We were expecting her to have surgery the beginning of next year but no one had said anything to us about what we could expect now. The cardiologist that was on call was nearby and she came to talk to us which I really appreciated. She told us we could expect Lucy to go another year without needing surgery. This is good because it will allow time for her heart to grow. Before Lucy had surgery her ox sats were in the high 70s, the day we left they were in the low 90s. She told me that those numbers would continue to drop and as they dropped they would be one indicator of when Lucy needed to be operated on again. She said we were going to continue to see Hazel getting bigger and bigger than Lucy. In the spring Lucy will need another cardiac cath (she's had two already) to look at her heart.

There is something about knowing that my daughter is not "fixed" that is eating me up. I know it's good that we can push back the surgery but how do you put a toddler through something like that? We can't lift Lucy up from her armpits for a month. She seems so uncomfortable. How are you supposed to keep a toddler from moving around?

Jack is loving having his family back. He still gets really nervous whenever the front door opens thinking we're all going to leave him. Lucy looks good. Yesterday my mom kept saying how much she looked like Hazel. We realized it's because Lucy isn't so blue anymore. It struck me today that Lucy was in the hospital the same amount of time as her uncle was on earth. He was my little brother who died of a heart condition. We have a lot to be thankful for. I have my moments where I forget that.

An end in sight

Lucy is now officially moved from the PICU. Yay!!!! I would have never guessed 24 hours ag0. Yesterday and the day before were really hard. Lucy was so alert but it wasn't Lucy. She didn't cry, she didn't smile. She was just vacant. Every time I got in the car those days I would break down. I'm at the hospital pretty much all day expect when I go home for a few hours to see Jack and Hazel. Being there with them and not Lucy has been really difficult. I can't look at Hazel without thinking about how close we were to losing Lucy. As I play with Hazel and Jack, all I think about is how different life would be without Lucy. I don't think I'd be so emotional about this except I know the worst may be yet to come. This surgery was only the "small" surgery to get us ready for the "big" one. They had to break a bone (her sternum) in order to get to the heart. It won't even have time to fully heal before they have to break it open again. It really is amazing how tough kids can be.

Today was a lot better. She started smiling and got off some more meds. She started eating on her own and is loving it. I saw Lucy again. We moved to the floor which has been wonderful. I feel like I'm able to be Mom again.

Don't you love the cards my little neiceys sent. I love them!

Before I go to bed I have to tell one last story. Lucy hasn't pooped in a few days so the nurse gave her a supository. Within 2 minutes Lucy had pooped. I got the nurse so she could take a sample and send to the lab. In walks the funniest lady ever. She says, "Oh I'll take care of that." She begins wiping Lucy up in the sloppiest way I've ever seen a diaper changed. She doesn't seem to mind. Poop is getting on her, on me, ALL over Lucy, on Lucy's socks, on Lucy's leads, ALL over the bedding, on the crib, on the floor, on the wall.......This woman actually starts using the bedding to wipe Lucy instead of the wipes. I was dying laughing. The whole time she acts like nothing is weird about the. She then says to me, "Does she look red to you? I'll go get some diaper cream." While she is gone Lucy pees(she still doesn't have a diaper on). When she gets back she squeezes a TON of diaper creme onto a blanket and starts using it to administer the creme. It took her 30 mins to clean up the mess. We had the funniest conversation about multiples while she did it. Appartently she knows someone who has quads (4 girls) . They really wanted a boy so they decided to try for one more. They ended up with quads again....yep 4 more girls. All under 3. That was her pep talk to me. When most people play the, "it could always be worse" card, I just get mad. But tonight, I think it worked. I still have no idea who she was.

Sorry I didn't include any pictures of that story.

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.

Sunday and Monday

These first three pictures are from yesterday and the last one was from today. We were able to hold her and feed her and she did really well. Then last night she started grunting with every breath. It lasted for several hours. She was awake but totally unresponsive. When you looked at her she looked right through you. I waved my fingers in front of her eyes and ... nothing. I hated it. They put her back on the resperator and for the last 24 hours she's been out. She hasn't been able to eat again because she had a bloody stool. Hopefully tomorrow she'll be able to eat. I haven't been too stressed about everything. I think it's mostly because I'm running on adrenaline. It's when all the craziness dies down that you really feel it. Chuck's feeling it now. On top of everything he still has responsibilities at school. We're not sure how he is going to work it all out. She had an ultrasound of her heart and things are looking good. The surgery did what they wanted it to. This is a huge relief to all of us. She's taking her time getting better but she'll get there. She's just teaching mom and dad a little patience and faith.

The Other kids

Miss Hazel today hanging out with Gammy.

I never realized Hazel was such a good baby. I try to home come for 2 or 3 hours in the day to be with my other kids. It seems so quiet with just Hazel and Jack. Hazel has been so easy and pleasant. When there are two babies it's kinda hard to notice if they're good because even when they're good it's twice the work.



Jack really likes baby toys.

When I came home today I was going to take a bath. Unfortunately Jack decided he ought to join me. He sure had fun though. I have video I'll try to post later. I wasn't able to stop him in time. Little stinker!

He's doing surprising well with all of this. He gets so excited to see us when we home home but doesn't get too upset when we leave. It's such a relief. The credit has to go to our friend and his wonderful babysitter Rebecca. I don't know what we would've done without her the past few months. She has been such a blessing to our family. We love her!

Good Morning

Hi, I decided to wake up a little this morning. I feel pretty icky but at least I don't have to wear that silly mask anymore. I hear they are thinking about giving me some real milk.

Well, I think I'll just go back to sleep. Thanks everyone!

Okay I'm an idiot. Read the second post first.

Good news for Lulu part two

There was about twice this many drugs yesterday but she's been weaned off of a ton. She's doing well off her drugs and hasn't been on any narcotics since five this morning.
This was a picture of Lucy taken just a few minutes ago. They took out her breathing tube today and she didn't do too well without it so they've got this mask on her to help her out a little. She stops breathing about three times today over a period of 45 mins but she recovered from it just fine. The mask is making her look pretty swollen but I think she's feeling okay. Tonight she's doing a little better than she was doing last night. She was acting pretty uncomfortable. This girl is so tough. She amazes me.

I've had a lot of time with my thoughts today. Chances are if you're reading this post I've thought about you. Not very many of you have met Lucy. Some of you haven't even met me. I'm grateful that so many people care anyway. My sister told my mother that she received 10 phone calls from people asking how Lucy was doing the day of her surgery. If that was you, thank you. Thank you for your prayers and thoughts. My family's burden truely has been lifted.

I have been thinking about all the prayers said on Lucy's behalf. Prayer is a difficult thing to understand. Did our prayers for Lucy save her? My guess would be, no. I don't think that's the point. This year I feel like I've begun to see miracles. I think they've always been there but my eyes were not opened. We see what are heart will let us. Heavenly Father wants us to acknowledge him and notice His hand in our lives. We have to let go and trust. Even if that means giving up everything. It was when we let go of everything that we were blessed and Lucy's heart began to beat again. I believe that it doesn't matter what religion you are a part of or not part of, if you ask in faith your prayers will be heard.

On a lighter note, Hazel is getting FAT. I went home, changed her diaper and she looked 10 pounds heavier(give or take). Jack's hair is so long I was able to put it in a teeny tiny ponytail today. I've probably gained pounds myself from all the crap I've been eating here. You're not allowed to eat in the PICU but I sneak it. Plus, the women next door nearly killed her son (whole other story, but HIPPA might get me if I say more) so I figure they can't get too mad for sneaking coconut M&M's. By the way if you haven't tried them you really should. I'm just saying.

Good News for Lulu

I am posting this post in two parts because computers hate me and I'm having difficulties.

I have no control over anything except the socks. Tomorrow I am planning on changing the socks.

This may seem silly but dang it it's all I'm allowed to do so I take it very seriously. Chuck asked me, "Why don't you just put on those hospital socks?" I decided if this is the only thing I can do for her they had better look cute. I told my mom about my control issue with these socks. She told me that after getting compliments from the nurses on her socks my mom decided to order more online. So we have that to look forward to.

These pictures of Lucy were taken yesterday(Day 2). Her chest was not closed yet at this point. The blood soaked bandages made me sick to look at but she still looks pretty cute anyway.

Long day

6:15-leave for hospital

7:00- fill out paperwork, talk to nurses, talk to anethsia, talk to nurse practitioner (we thought she seemed like a little bitty) and talk to her surgeon

8:30-we kissed Lucy good-bye and even though she was starving and pissed off she gave us one last beautiful smile as we handed her over to the nurses

-we went to a waiting room and began the waiting

10:15-My parents arrive

10:45ish- the nurse practitioner comes in panting. She was clearly very upset and frazzled. My first thought when I saw her was, something is really wrong, but it can't be Really wrong because she would never come to us like this if she was dead. The nurse began to explain how things were not going well with Lucy. Her heart rate was all over the place. They shocked her 4 times to get her heart pumping regularly but it hadn't worked. She had been put on a bypass machine but needed to be put on a long term life support machine called (ECMO). It was doing everything for her, pumping her blood, oxygenating it so that her heart could rest. She told us that it might be several days to possibly a week or more that she would be on this life support machine. We all panicked. We sat in silence. No one told me everything was going to be ok. No one said anything. Chuck and I both posted on facebook, asking for prayers. My mother called my sister and asked for her to get people in her ward to pray. Our Nurse practioner told us to pray. So we did.

10-20 minutes later- the nurse practitioner came back. This time she was calm but not smiling. I wanted to scream at her to leave the moment I saw her. She had come to tell us Lucy was dead. I knew this was why she came. She looked at me. She had so much pity in her eyes. There was no trace of the bitty that she had been before. I wanted to hit her. She didn't tell us Lucy was dead. I don't know what she said. All I remember hearing was that Lucy was still not doing well, but she was alive.

Who knows how long later- a social worker showed me a room just off the waiting room where we could use if we needed. It was a room that they use to let parents sleep in at night. I took Chuck in there. I held him as he sobbed. I have never seen Chuck do that and it scared me to death. I told him I knew Lucy would be ok but I didn't. The truth is I had felt like Heavenly Father had been preparing me to lose her. The past few days Chuck and I have been talking about the joy our daughters have brought to our lives. I had a dream the other night where I was on the beach with him and our children. They were a couple of years older and it really was the best dream I ever had. I kept thinking that maybe these past few days were Heavenly Father's gift to us, so that we would always remember her so perfectly.

A few minutes later- we were moved to a private waiting room. We were told the Dr. would be with us shortly. I tried to make jokes. No one felt like laughing. We waited a long time. I knew something was wrong. It had been too long. It was. The nurse practitioner came back with pitty all over her face again. She told us that they had been on their way with Lucy to the ICU when she started bleeding. They took her back to the O.R. and found that she was bleeding out from her sutures. She was bleeding because of the anticoagulants she was on. She had to be on them to make the ECMO machine possible. She had to be on the ECMO to keep her heart pumping. She couldn't be on the machine because she'd bleed out. Hmmm... DILEMA. They took her off and just had to wait. Then we had to wait....

After waiting awhile- the nurse came back in. She told us Lucy was off ECMO and was working her heart by herself. I couldn't believe it. We should have been thrilled but the day had been filled with so much bad news we hardly knew what to think.

Later maybe about 2 or 3ish- the nurse came back with the doctor. He told us he couldn't explain how she recovered. I began to feel like the worst might be over.

3ish maybe?- Chuck and I see Lucy for the first time. Her chest is still open. It's covered with bandages but you can see it beating. It freaks me out.

Now- She's intubated through one nostril. She has another tube suctioning out her stomach. She has lines coming out everywhere. One in her neck. IV's in both hands but she looks pretty good. She's having problems with her kidneys, and she is completely snowed (a new word I learned today). They may or may not be closing her chest tomorrow morning. We'll just have to wait and see.

When Hazel had her surgery there was a time I thought she was going to die. I was terrified but today I was preparing myself for it. I began questioning my faith. I asked myself , would I accept this if it were Heavenly Father's will for her? I had to take a really hard look at myself. It was a little scary.

Prayers were answered today. I will forever be grateful for those prayers. My sister Katie could also use some prayers tonight. She is also in the hospital with kidney failure. I know her kids are worried so if you could keep them in mind too. Thank you so much.

Pictures

My Momma and Lucy

My papa and Jack Jack. He doesn't usually have a binkie.
Zonked out from playing too hard.
Hazel and her blister from her helmet. It's fitting much better now.
Hazel without the helmet.
It looks so much better than it used to.
Happy girls!

This week

The past few days have been pretty peaceful considering that one of my children is being sliced open this week. That may be all the frozen yogurt Chuck and I have been drowning ourselves in. Chuck and I have seriously been 4 times in the last week. We're obsessed. I wish they had a punch card. Has anyone else been to Yogurtini? I love it. I love the coconut and the plain. Ahhhhh.....

Babies are crying downstairs but Chuck is home and is giving me a break. They really are so much fun. I'm a little obsessed with them. People say the weirdest things to us when we go places too. Today we took all three kids to the post office because we were getting them passports. This old man came up to Hazel and said, "Where have you been? I haven't seen you in years!" Then he walked away. Another man said yesterday, "They're cute now..." I never quite know what to say when people talk to my babies and not me, especially when they ask questions. I feel dumb answering things they're asking my babies but they sure aren't going to do it.

Halloween this year was horrible. I hate Halloween. We didn't even get all the kids in their costumes at the same time. We lasted about 30 mins at our ward Halloween party before we decided it wasn't going to work and went and got frozen yogurt for diner instead. It was good.

We meet with Lucy's surgeon tomorrow. I can't believe we are already doing this all over again. It seems like we just barely did this with Hazel. As hard as these girls have been I wouldn't have traded this experience for anything.