Here we go again

Christmas Day

2012-01-18T00:47:00.003-06:00

Our first year together Chuck bought me Doris Day movies. It was a little unusual so I got him back.

One of my childhood best friends cross stitched me this after Lucy died. I love it and for Christmas my mom framed it for me. I was my favorite gift. Thank you Rachel.

Technically this is Boxing Day. We got home from Mexico late on Christmas Day so we pushed back Christmas a Day. It was a nice way to do it. Carlie's kids came over to Gammy and Grandpa's (which is our house to now.)

A couple hours later we were at the doctor's for Hazel's leg.

Mexico

2012-01-18T00:28:00.003-06:00

A little bit of the food we gave out.
They waited outside for hours while we got things ready.

We were lucky enough to get to go to Mexico over Christmas. It was a good distraction and made celebrating Christmas without Lucy a little easier. One day we went whale watching which was amazing. I've been before but this time we saw them jump out of the water. We saw mana rays 16 feet across and got so close to dolphins we could hear there little squeeks. I loved it. Chuck gets sea sick so he stayed back with our kids. I stayed with the kids one day when he did zip lines in the jungle. And my mom stayed with the kids one day so Chuck and I could go do some service. My family went to Mexico last year and found an organization they really liked called 'Families of the Dump." This community lives just outside a dump and they earn money by finding things in the trash they can recycle. This organization is doing some really good things for this community. The day we were there they had received a large donation of food from the man who owns the resort we were staying at. We helped unload 2 trucks of food and passed it out to the community. It felt good getting sweaty and doing some hard work. The Mexican men were making fun of Carlie and I for lifting the heavy crates. Yea, we workout. Sometimes :)

Christmas Eve

2012-01-18T00:15:00.005-06:00

I refused to take a family picture with all four of us. It feels too soon.

Our last night in Mexico was Christmas Eve. We went to the resort's fiesta. We were right next to the dance floor which was fun for the kids, especially Hazel. Another little girl Hazel's age came over and started dancing. Hazel was fascinated with her. It's like she remembers she's supposed to have a little friend there but for some reason she doesn't anymore. It breaks my heart. I nearly cried when the little girl's father started asking me how old she was.

In the hotel

2012-01-18T00:09:00.002-06:00

Happy to say Hazel did not get sun burned in Mexico. But putting on sun screen was never fun.

Room with a view

Setting the turtles free

2012-01-17T23:42:00.006-06:00

One night in Mexico we were able to set baby sea turtles into the ocean. I loved it. Jack didn't quite get it but I loved that he kept calling his turtle squirt.

My Mom and Dad

Jack and Chuck
Momma, me, my sissy Carlie and Hazel
Jack and squirt
Go squirt!

Having all the people around gives the sea turtles a better chance of survival. The birds leave them alone.

cute!!!
Halle and Jessi

Hazel face
My little bro Michael and girlfriend Stacy

I miss how cute Jack's hair was in Mexico. It curled so easily.

2012-01-07T15:41:00.001-06:00

We took Hazel to the doctor on Tuesday and discovered her swollen lymph node had doubled in size from the previous week. They ended up admitting her to the hospital that day. She was quite the grumpy girl. Stranger danger is in full force. Getting the IV in took over an hour of trying and brought back some difficult memories. We were told she would not need a biopsy if they found pus because would indicate an infection. So we were thrilled to find out it was an infection. They drained the site and filled it with gauze. Every morning for a week we have to hold her down and pull a little out. She hates it but overall she's feeling a lot better. Hazel did so well we were able to leave the hospital that first night. I was relieved because I was not looking forward to Hazel freaking out all night. I'm so grateful this is over and turned out to be nothing serious. We appreciate all the prayers.

2011

2012-01-02T23:35:00.001-06:00

Last year at about this time I was feeling very discouraged about the upcoming year. I just wished it could be over. Well here we are. It's over. I'm so glad I didn't know then what I know now. We didn't know Lucy was going to die. We thought we were through the worst by June. Little did we know it was just beginning. A lot of people have expressed their relief that 2011 is over and are hopeful 2012 will be better. Even though this was the hardest years of mine and Chuck's life, we feel we'd be betraying Lucy to say it was the worst. We heard our girl's first words. We saw Jack learn to read. We celebrated Easter, our daughters' first birthday and the removal of one helmet. Our girls became friends and Jack adored his sisters. Most of Lucy's life was spent at home, the place she loved best. Lucy wasn't going to die. We were already making plans of where would be the best places to live for Lucy's future medical care. I think a lot of people think that maybe this was easier because she was sick. We had as much hope for her as Jack or Hazel. I miss her so much. Someone told my husband this week that I need to, "get over it." I know they weren't meaning to be unkind, but I don't think I will ever "get over it." I don't think we are meant to get over those we love. I feel her pulling our family towards her. I don't want to forget everything she taught me.

I loved Easter this year and so did Lucy.

Jack being Chuck's son has no idea was this gear is even used for.

Happy girl.

Chuck did a 5k by the Kansas City temple.

I was so proud Lucy was able to learn to crawl. It took so much work for her.

One of Lucy's last days at home.

I love this picture of my niece with the girls.

Hmmm.

This picture of Hazel looks just like a Lucy face to me.

- Posted using BlogPress from my iPhone

Sneak Peak

2012-01-02T00:10:00.001-06:00

A little sneak peak of our trip to Mexico. I'll get around to a real post soon.

Christmas Eve.

More drama

2011-12-29T19:24:00.001-06:00

Hazel has a lump in her groin that my mom noticed about a month ago. We were in Mexico over Christmas and noticed it had gotten much larger. When we got home my dad called his old high school buddy and our kid's pediatrician. We went over to his house and he ordered an ultrasound and some blood work and sent us to a pediatric surgeon. He ordered more blood work and a chest X-ray. Everything so far has come back pretty normal. In the last few days it has gotten even bigger and turned painful. She has even started walking funny. The doctor we saw today was infectious disease. He told us if it gets worse in the next few days they're going to do a biopsy. They are optimistic that it's not leukemia or lymphoma because it would be so rare. That's comforting but not that comforting. We could again use some prayers. We're pretty hopeful nothing's wrong but it hard waiting.

- Posted using BlogPress from my iPhone

Two Months

2011-12-13T15:54:00.006-06:00

It's been two months since we've lost our beautiful little girl. That morning I drove to the hospital thinking about Lucy and what her future would be. I had no idea what was coming later that day. I always thought I would see it coming if we lost her but I didn't. Looking back I don't believe Lucy was really there at all that day. I think her spirit was lingering just long enough so that Chuck, my mother and I would all be there to say goodbye. It was so rare that the three of us were all with her at the hospital, especially on a day with no surgeries. But there we all were standing around her with folded arms as she slipped away. I know I've told this story before but it is so easy to forget the miracles that are sent our way. As hard as we try to find a solution in our minds for what could have saved Lucy's life we must remember that it wasn't meant to be. We exercised all of our faith. We believed that Heavenly Father could heal her. I still believe he could have. But he didn't, and now we are working on having faith in his plan for her.

Jack and Hazel make it very difficult to act sad around them. They are both so empathetic and aware of our emotions. Hazel scowls if anyone is crying and buries her little head into our laps. Jack starts explaining to us that we should be happy because Lucy isn't sick anymore and that it's not our fault. I love them so much and I'm so grateful to have them to help pull us through this. It's hard for me to watch Hazel forget but I know that Lucy is going to remain by her side her whole life.

Losing Lucy has broken our hearts and put us into a better place. Even though it doesn't usually feel better. The days that are easiest for me are days where I'm focused on my Savior and the love he has for us. The days that are hardest for me are when I'm letting the world and Satan tell me what to feel. That this isn't fair or this wasn't supposed to happen. The doctors made mistakes or it's normal to be mad.

Chuck and I never quite know when the sadness is going to hit. We were at Costco and I saw a mother pushing identical twin girls a little older than my girls in her shopping cart. I looked down and saw the empty seat by Hazel and started to cry. Poor lady probably thought I was nuts. Jack wakes up still screaming in the night saying he misses Lucy. He worries when he doesn't know where Hazel is or if anyone says they feel sick. We've had some neat experiences with Hazel that have helped us see that Lucy is still around. Hazel is forgetting her and doesn't say her name anymore but she still will find pictures of her to kiss. I'm grateful that Jack and Hazel will grow up knowing that there is someone working for them on the other side. My siblings and I all grew up feeling our brother Garrison's influence, who also died from a heart defect. Even though my kids will forget Lucy, Chuck and I are determined that they will never really forget her.

2011-11-29T02:34:00.002-06:00

I know I haven't been very faithful at the blog lately. I'm not sure what to write anymore. It feels as if time is standing still. We're not spending much time making plans or looking ahead. Just living in the present. Something I wish I had been a little better at in the past.

People ask Chuck and I frequently how we're doing and we usually say ok. It doesn't mean I'm not bawling my eyes out....every day. Because I still do. I miss Lucy so much. At least once a day I look at Hazel and I get a glimpse of Lucy. It always shocks me and makes me so sad that they won't be the little friends I'd hope they'd be.

I'm doing much better than I'd ever imagined. The anger is pretty much gone and in it's place I've been filled with peace. Lucy gave me a great gift. She broke my heart and in doing so I feel like I'm in a better place than I've ever been. Even though it also feels like the worst. I feel closer to my Savior than I ever have. My desire to have the Holy Spirt with me is stronger than it's ever been. I have a deep desire for Lucy's death to have meant something. The only thing in my power that I know to do, is to live my life in alignment with the teachings of the gospel and to follow the promptings of the Spirit and to teach my remaining children to do the same. I hope that it will be enough to live with her again.

It seems like I'm always coming across people with similar stories as us. It's amazing how many people lose a child. In a way we have an unfair advantage. I know Lucy is going to be working on our family until we are all pulled back to her and I think all little children who die are doing the same for their families. I know it doesn't matter how far we've strayed or how unclean and unworthy we think we might be, there is a loving Father in Heaven who is waiting for us to turn to him. I wish it hadn't taken the death of my child to change my heart.

2011-11-19T16:33:00.001-06:00

Life has been pretty lazy lately. We mostly just lounge around at home. I'm glad we're able to.
We went back to Kansas City which was pretty emotional. I feel so bad that Lucy was never able to come back to that home. I know when she was in the hospital that was the home she was missing.
Jack and Hazel are starting to normalize.(For a long time Hazel would wake up screaming in the night after Lucy died.) Jack is finally getting potty trained. His speech therapy is going really well and he's so fun to chat with.

Jack with his new (to him) skis.

Hazel on Jack's bed in Kansas City.

Poor Hazel can't open the freezer.

Halloween

2011-11-09T15:19:00.001-06:00

Jack wanted to be a white capital A for Halloween. The girls were going to be Thing 1 and Thing 2 but you can't have a Thing 1 without a Thing 2. So....Hazel was lowercase a.

How we lost Lucy

2011-10-30T22:08:00.010-05:00

I know I need to write this down and have a record of this but I've been avoiding it. For some reason writing down the details seems much harder than telling someone what happened.

We were not expecting Lucy to die. No one was. Her doctors were surprised. We all were. Lucy died on a Thursday. On Wednesday she had a slight fever but was doing well. I spent Wednesday morning with her and Chuck came to switch me sometime midday. He brought Hazel with him and Lucy and Hazel were able to see each other briefly. That would be my last memory of Lucy responsive. She smiled at Hazel. Chuck came home Wednesday night with nothing but good news. He told me they were thinking of extubating her the next day. I arrived early that Thursday morning. They told me her fever was a little worse. I was there for rounds. She would occasionally open her eyes that day but it didn't look like she was looking at anyone, just starring off. I was worried.

The previous Sunday I was really worried about Lucy. I felt an impression that I needed to ask my brother-in-law Matt to give her a blessing. I thought this was strange but later in the week I called my sister and asked her to ask him. We arranged for him to come on Thursday. So here we found ourselves on Thursday. Lucy was clearly not herself. She had been intubated for 11 days but even while intubated she'd wake up for part of the day and be interactive. She was burning up and around noon I learned that her fever had reached 106 degrees. The nurse didn't seem too worried which calmed me down a little. My mom got there around one to let me go home but I felt like I needed to stay. The nurses and doctors were running tests to find a source for infection. Everything was coming back negative. Several times I mentioned how absent she seemed but everyone told me it was because of her fever. I kept praying for a miracle. I kept thinking about the prompting I had received to ask my brother-in-law to come. A couple of hours before she died they looked at her heart with an echocardiogram and everything looked fine. Then at 5:30 she was scheduled for a CT scan to check if the infection had gone to her brain. When we walked down with her she was so lifeless. I asked the nurse if she had given her any drugs. She hadn't had any narcotics for over 7 hours. I was shocked. Again I felt we needed a miracle. I believed we would see one. My brother-in-law met my mother and came to the room where Lucy was having the CT scan. We all walked back to Lucy's room in the ICU. Her CT scan looked fine too. Chuck had arrived and was waiting for us in Lucy's room to help with the blessing. The nurse started Lucy's antibiotics and left the room so we could give Lucy a blessing. My mom, Matt, Chuck and I all got up and stood around her crib. Chuck looked at me and asked if I would say a prayer. I folded my arms and looked at Lucy. At that moment with folded arms, Lucy left us. They did CPR for 25 minutes but she could not come back. Heavenly Father took her before we were able to give her a blessing. He let us know that THIS was her time. There was nothing more for us to do. He waited to take her until Chuck, my mom and I were all there. It was not the miracle I had been wanting or expecting but it was a miracle. Every time I begin to wonder "what if we had done this or that," I remember how she left us. The doctor looked at her EKG after she passed. There was no sign she was about to flat line. It came from no where. I really felt like she wasn't there all day. I think Heavenly Father was waiting for us all to be there. Something that rarely happened. Earlier that day my mom had read Elder Cook's talk from conference, "The Songs They Could Not Sing." She read it twice. She later told me the scriptures that stood out from the talk were, "The elders...shall be called, and shall pray for and lay their hands upon them in my name; and if they die they die unto me, and if they live they shall live unto me." and "Thy days are known, and thy years shall not be numbered less; fear not..., for God shall be with you forever and ever. " These scriptures have brought me a lot of comfort since Lucy died. Lucy was home the weekend of general conference. We were pretty stressed out with Lucy home. She required so much oxygen that if the nasal cannula came off for just a few seconds she would desat. I remember feeling like I hadn't got much from the talks. Then I heard this talk, it was the last talk of the weekend and I felt some comfort.

We received the results of the autopsy a week ago. I was worried that if I learned the cause of her death it would cause me to resent those that were in charge of her health but it hasn't. Lucy's last open heart didn't help in any of the ways we were hoping. That we knew. Four weeks after the surgery they did a cardiac cath to balloon her left pulmonary artery. The spot they ballooned caused an aneurysm that may have contributed to her death. If they had done more echo cardiograms they should have caught the aneurysm but they didn't. Lucy's time was known. I know I can't spend my time asking, "what-if?" With Lucy there are too many, what-ifs. It would drive us crazy to entertain those kinds of thoughts. We believe Heavenly Father made it known to us that it was her time. We had exercised all of our faith but it wasn't meant to be. We love our little girl. We miss her. We wish she could have stayed longer. I'm grateful that her life touched so many.

2011-10-29T15:20:00.004-05:00

One thing that I learned from Lucy's life is to look for the hand of God in everything. The greatest comfort I've ever felt comes in those moments that I am able to see God's influence. After Lucy died I had a neat experience I have felt compelled to share. About a month or so before Lucy died my sister Carlie brought me over a poem about adversity. It was written by Eliza R. Snow and was written for my great-great-great grandmother and namesake Eliza Partridge. It was a beautiful poem. Then 3 days after Lucy passed away someone came across our blog and directed me to a blog of another woman who lost her baby recently. Her most recent post was written the day before Lucy died. It was a story about my great-great-great grandmother and how she lost her baby. It told about how Eliza and her sister Caroline tried to save the baby. My sister Carlie's real name is Caroline. It was shocking to me. I couldn't believe how aware the Lord was of me. I told my sister this story. She wondered if the poem she gave me was about Eliza's child dying. It wasn't. But in the process she learned that Eliza R. Snow wrote Eliza Partridge this poem when her baby died.

"Belov'd Eliza, do not weep"

Belov'd Eliza, do not weep

Your baby sleeps a quiet sleep;

Altho' in dust its body lies

Its spirt soars above the skies.

No more upon your throbbing breast

it lays its little head to rest-

From all the pains of nature freed,

Your fond caress it does not need.

Sweet was its visit but its stay

On earth was short--'twas call'd away

By kindred spirits to fulfil

Its calling and Jehovah's will.

Then soothe your feeling--do not mourn,

Your noble offspring will return,

With all its loveliness again

And with its friends on earth remain.

I can't imagine anything worse than losing a child and yet this is where I find myself. Everyday is hard. I still find myself angry at times. I am still in denial. I still ache for her to be back with us. But I am grateful for a loving Heavenly Father and the knowledge that he loves his children.

Missing Lucy

2011-10-22T01:26:00.001-05:00

I can't sleep. I ache to be with Lucy again. She had a beautiful funeral that brought us a lot of peace but it doesn't make me miss her any less. It's hard to imagine it will ever be any better. I'm still in denial. I keep telling myself, "she was just here. She can't just be gone." Then it hurts all over again. After the funeral Jack had some nightmares. I try my best not to cry in front of him anymore. It's hard and nearly impossible. Hazel knows somethings up too. They both have been acting up a lot this week. We are currently on a little vacation which I think has really been good for them. They have been getting lots of attention from family.
Everything we do seems to remind us of Lucy and I hate that she can't be with us. We miss you Lu.

A Video for Lucy

2011-10-18T13:36:00.001-05:00

And a mobile version here.

Lucy's Obituary

2011-10-15T23:11:00.000-05:00

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.

The source of our joy and sadness

2011-10-15T01:22:00.002-05:00

We love you Lucy.
We miss you.

We want you back.

Please help us get back.
We love you.

- Posted using BlogPress from my iPhone

Goodnight Lucy

2011-10-14T04:10:00.001-05:00

Dear Lucy,
It's 3am and I can't sleep. I miss you so much. I've been missing you for days already. I don't know how we'll carry on without you. You passed life's tests with flying colors. The last months of your life taught me so much. I never saw a happier or more forgiving child. You touched so many people that even the cleaning lady sobbed and needed to give you a kiss goodbye. We love you little Lulu. I don't regret a moment of your short 15 month old life. It was heaven on earth. I've been praying for you to have sweet dreams and to be comforted by angels. Tonight I'm praying those angels guide you in safely. Goodnight Lucy.

Lucy Post Op..Again

2011-10-05T09:17:00.001-05:00

Lucy had surgery on her diaphragm on Monday. It was injured during her last open heart surgery. It seemed to go well but we still kind of have to wait and see. She was reintubated on Tuesday after a very difficult morning of breathing. Her sats dropped down to 50% and her heart rate and blood pressure went way too high. The chest x-ray showed that het entire left lung had collapsed. Today she's having surgery to hopefully find some mucus in there to suck out.
The surgeon told us the incision for the diaphragm surgery is actually much more painful than for open heart surgery. Because of this she might not want to take deep breaths which isn't good for her lungs.
It's sad how well we know everyone in the ICU but I think it makes it a lot easier on us and A LOT easier on Lucy.

Pics

2011-10-02T22:46:00.001-05:00

Okay, I know these pictures are kinda random but I've been so bad at posting lately that I thought I ought to include them.

Lucy has decided she is going to be a nurse when she grows up.

30 compressions

2 breaths

Look mom, I saved her!

Lucy on her last day in the ICU after 2 months.

Goodbye ICU!

Look at how thick Lu is. I never thought she'd surpass Hazel.

Sitting on Gammy and Grandpa.

The past almost 2 weeks have been wonderful having Lucy home. She loves it and is so much happier. On Thursday Lucy was admitted and spent one night in the hospital. That was rough. She did not want to be back there. We have to bring her back tomorrow. She's having surgery on her diaphragm. I'm a nervous wreck and I'm praying that it works. Lucy has had a rough couple of days recently. She's been throwing up a lot and has these spells where she doesn't breathe well. It's terrifying. We appreciate all the support we continue to get from everyone. Thank you so much.

2011-09-26T02:47:00.001-05:00

Life is tough right now. It's really hit me the last few days. I always get nervous before one of my children has a surgery but this time it's different. We don't know when it will be. We aren't familiar with the hospital, doctors or even city it will be in. I have to completely abandon my other kids for who knows how long. This surgery is important. Even if everything goes exactly as the surgeon wants, we can't really know how much it will help. People are always telling me how good Lucy looks but the truth is she looks horrible. Her skin is mottled and covered in scars from all the IV pokes, chest tubes and horrible rash she had in the hospital. We are so happy to have her home but she's still sick. We still have to treat her like she's sick.
We don't many normal things with her. Every evening since she's been home we take a walk around the neighborhood. I look forward to it and I think both of my girls do to. The rest of the day we watch movies, take naps (the kids) and try to keep track of all the medicines we have to give.
I went to church today, it was rough. I haven't been in so long and I was an emotional wreck. I brought Jack with me who is consistently a monster at church. Before the meeting even started he was showing signs that he was going to be horrible. I just prayed that he would be good at least during the sacrament. As we were sitting there and asked my sister if she had a picture of Jesus. She pulled out a little book she had made with different pictures in it. Jack sat on my lap and we looked through it together. I explained all the pictures to him. When we were done we sat for a few minutes in silence. My little boy folded his arms and said a little prayer. "Heavenly Father, Thank you for Momma and Daddy. Thank you for Hazel and Lucy. Thank you for Gammy and Grandpa. Thank you for Grandma and Grandpa. In the name of Jesus Christ Amen." It is always the same prayer with Jack but today I found it so touching. Jack doesn't understand who he's praying to or why we do it, but he does know what's important to him. His family is the most important thing. It was a tender mercy that he was so good for me today. Sometimes it's the little things that make us feel not so alone and like our Heavenly Father is there and listening.

Waiting

2011-09-24T22:44:00.001-05:00

Having Lucy home has been wonderful but has also been extremely stressful. Lucy is now on oxygen in addition to a feeding tube the runs 22 hours a day. I hate having her tethered. The worst part about the oxygen is that it keeps us from going anywhere. She needs so much that she runs through a tank really fast. At home she using a compressor that is battery powered but when we leave she needs the tanks. We took her to the pediatrician the other day and during the appointment Chuck had to run out to the car to get the back-up tank we'd brought. I guess the thing that's really the worst about the oxygen is how dependent she is on it. If it slips off her nose she desats really fast and her oxygen sats are really low, worse than they were when we got to the ER two months ago. She wears an oximeter at night that alarms if she drops below 85%. The first night she was home the alarms probably went off a dozen times. Chuck and I now split the night sleeping outside of the girl's room, waiting for the alarm to go off. It's getting easier. Lucy is getting more used to it at home too. This was only her home for three weeks before she was admitted to the hospital. We are anxiously waiting to hear from cardiology to see if Stanford had approved the insurance. We have an appointment with Lucy's cardiologist on Tuesday. We're really hoping we'll be going to Stanford sometime next week. Sometimes I'm horrified at how things are turning out but most of the time I just feel really grateful that we've been allowed to keep fighting for Lucy.

Lucy smiles

2011-09-18T23:45:00.003-05:00

I am amazed by this little girl. She has the best attitude. She loves all the attention she gets and she loves making everyone smile. She's made friends with all the cleaning ladies. Her favorite is named Martha who comes by several times a day and asks Lucy to dance.

The other night a nurse was showing Lucy pictures of our family and Lucy started to cry. This is hard for her but she makes the best of it. If only we could all smile this much when things are rough.

8 weeks into this mess!

2011-09-16T00:59:00.001-05:00

So much has happened I don't even know where to begin. I won't go into a lot of detail. We had a bad experience with Lucy's surgeon and we got another guy for the time being. We sent Lucy's records to the best surgeon in the world for Lucy's particular needs. He thinks he can do the surgery and that it will help Lucy. He wants her to come as soon as possible. We have to wait for insurance approval which could end up taking weeks. If it happens sooner than that they'll wait to fix her diaphragm at the same time as her open heart surgery. If it takes awhile they'll do her diaphragm surgery here. She needs it operated on because of a surgical complication from her last open heart surgery. We weren't expecting them to want to reoperate so soon. We thought she'd be coming home first. I was a little shaken when I heard the news but I really believe this is her best hope for a healthy life. The doctor I spoke with yesterday said things like "you don't have to do this. You can choose to stop now if you don't want this for her. " Unless you've been through something like this it's hard to understand how much a child fights. One reason Chuck and I have held it together through this is because Lucy seems to know what she has to do and she sucks it up. She fights everyday. And the days she's tired and doesn't want to try, it weighs on us. We are all tired of watching our little girl live in the hospital and get cut open again and again but we really feel like there is hope for her. Lucy will most likely be flying to Stanford. We're hoping to be able to stay at a Ronald McDonald House. I don't even want to think about how we're gonna get through this one.

Sunshine!

2011-09-16T00:36:00.001-05:00

Lucy got to go outside 2 days ago for the first time in almost 2 months! She loved it but was a little freaked out.

- Posted using BlogPress from my iPhone

Walk for CHD

2011-09-16T00:34:00.001-05:00

It's almost been a week since these were taken. Last Friday my sister Carlie decided that the family was going to participate in a walk for congenital heart defects. She and my mom and my mom's friend made shirts for over 30 people. My whole family and Chuck's whole family went. I was so touched. I was with Lucy at the hospital and I really wish we could have been there.

- Posted using BlogPress from my iPhone

You're Fired!

2011-09-10T12:48:00.001-05:00

There is a lot of Lucy news that needs updating. After Lucy's cath that was done 9 days ago they learned that Lucy's diaphragm had been injured and would require another surgery to repair it. Everyone told us that doing the surgery would likely help her to breathe better on her own. It was actually a relief to hear that something could be done to fix it. Also, I may have mentioned this in the previous post, a cardiologist told us he strongly recommended us sending her information to other surgeons. We've had a lot of issues with Lucy's surgeon. He's new to this hospital and his communication with us and her attending physicians has been horrible. On Monday we complained to the attending that he hadn't come to see us after almost one week of knowing there had been a surgical complication. The guy ended up calling me and we had a yelling match over the phone. He ended up hanging up the phone on me. Cool guy. Chuck and I met with him the next morning. There was also another doctor, a nurse practitioner and 2 nurses in the room. I was grateful. There was a little more yelling, just on my end. He told us he didn't think fixing the diaphragm would do any good and he didn't think doing another open heart would be worthwhile but then he proceeded to tell us when he'd operate. You know, this guy might be right, doing more surgery might not do any good but don't tell me you're going to operate when you think it's a bad idea. He then told us if we wanted to send her records to someone else, he would just move her right away. We were shocked. What a responsible guy. Let's move her to Stanford while she's still sick. He told us to think about it and then he left.
First of all, if they do do another open heart surgery it probably wouldn't be for months. Did this guy really think we'd want to go wait in Cali for months. We have made plans to have Lucy's records transferred. They will have a meeting on Wednesday to decide what the best plan for her is. We have switched surgeons here at Primary. We really like him. We asked him if he'd feel comfortable doing Lucy's open heart surgery. He told us if it were his child he'd send her to Stanford. So there you go. I think what we'd really like is to have her diaphragm fixed here and then hopefully go home for awhile. Then once she's ready, go to Stanford. I have a feeling things won't work out hat way. I guess we'll have to wait and see.

- Posted using BlogPress from my iPad

Cath update

2011-09-01T18:14:00.001-05:00

A quick update on Lucy's cath. Things went really well. They were able to get her left pulmonary artery open with a balloon instead of using a stent like they were expecting. This was really good news because the stent may have been damaging to her already crappy lungs. Some of the bad news is that Lucy's left diaphragm isn't functioning which may need to be corrected with surgery later on. We're hopeful we won't need to do anything. We were also told that her right collateral artery is providing significant blood flow to her lung and he believes it's in Lucy's best interest to reoperate to get it. We were a little confused because the cardio thorasic surgeon told us he wasn't sure about the surgery. The cardiologist recommended we get a second opinion from one of the leading surgeons in the country. So we're planning to sending Lucy's records to Stanford where there is a surgeon who has made cases like Lucy's his whole profession. I've heard only good things about this guy. So that's where we stand now. We're finally working on getting Lucy home and healed up to get her prepared for another open heart probably in the next year. They showed us images from today's cath and it's amazing how much blood flow they diverted.
Lucy amazes me. We were able to walk her down to the OR where we dropped her off. She got teary eyed and waved goodbye before we ever said anything to her. She just knows. This girl goes through so much crap and somehow still loves us and still trusts us.

4 weeks post op

2011-08-31T14:16:00.001-05:00

Tomorrow Lucy is having a cardiac cath. This is her 6th cath and her 13th surgery. I've never been too nervous for her caths before but this time is a little different. The risks are a little higher but mostly our expectations are really high. We're hoping that by stenting her left pulmonary artery some of the pressure in her heart will decrease and she can come out of heart failure. Some doctors have briefly mentioned the possibility of a heart transplant but for now we're trying not to worry about that.

On Friday, Lucy will have been in the ICU for six weeks. I can't even imagine how bored I'd be after six weeks. She hasn't been allowed to eat since her surgery. She loves all the attention she's getting but I know she just wants to come home. I brought Hazel yesterday. It's always a little hard when I bring her. One or both of the girls always gets a little freaked out. Yesterday it was Lucy.

Oh, and I should probably mention....Chuck did not go to San Antonio. He's taking the rest of the year off and we're moving here. Yup, living in the parent's basement. Things are really starting to get interesting around here.

2011-08-27T19:06:00.001-05:00

Jack and Hazel are becoming good friends. Hazel went to Kansas City this week and officially got the ok to remove her helmet. We were so happy she got it off a couple months early.

Lucy has been really happy lately. She will be having a cardiac cath Thursday which will be her 13th official surgery. Crazy!

3 weeks post-op

2011-08-24T19:21:00.001-05:00

So Lucy is doing pretty good. She's three weeks post op. They have her back on CPAP just while she sleeps but does okay without it for at least part of the day. Chuck is leaving on Sunday for San Antonio and I'm freaking out a little. A week from tomorrow Lucy will probably have her cardiac cath but who knows that could change. Chuck is going to work on getting a rotation in Utah for October. It just doesn't look like going back to Kansas City will be very likely then.

Lucy......

loves.....

her......

wet washcloths.

See the doll to the left? Lucy was doing CPT on it. Poor doll. If Lucy has to go through that crap I guess she can deal with it too.

Lucy loves Repunzel. I love this picture.

A little Lucy

2011-08-22T23:45:00.001-05:00

YouTube Video

- Posted using BlogPress from my iPhone

Finally...some good news!

2011-08-22T23:26:00.001-05:00

Lucy was weaned off CPAP and doing great. So that means her lungs are doing better even if her heart isn't yet. It was a great day. Lucy was so happy and could finally move around comfortably. Lucy gets so many visits from nurses because she is so happy to see everyone. I was so grateful for today. I know a lot of people fasted and prayed for Lucy yesterday and I just wanted to say, "thank you."

The past week

2011-08-21T15:53:00.001-05:00

This has been a pretty rough week. My friend from high school lost her little boy yesterday. I feel heartbroken for them. I was just down the hall with Lucy when it happened. I was so grateful I was here to witness the amazing strength that family has. I can't imagine anyone handling the death of a child with that kind of faith. It hit close to home and taught me I have a ways yet to go.

I'm having a hard time with Lucy. Coming to the hospital is getting harder and harder. She's fighting though which gives me the strength to fight too. It seems like anytime anyone talks to us we get bad news. Today one of the nurse practitioners came in and said, "we need to talk." I felt sick. "Do you realize your daughter is wearing skulls on her shirt?" Needless to say I was pretty relieved.

Lucy is wanting to sit up and crawl but her CPAP makes it difficult.

Hazel misses sissy.

Jack gets jealous when I forget to take pictures of him.

Lucy had a bronchoscopy this week. I don't even remember what day. The were hoping they'd find a bunch of mucus to suck out and hopefully help her get off CPAP. They didn't. They found that Lucy's bronchi are really narrowed and that everything in her lungs was a little enflamed. In the last week Lucy has made almost no progress coming off CPAP until today. They are planning on doing everything really slowly with her.
I also had a talk with cardiology this week. They've been wanting to push forward Lucy's cardiac cath. They even rescheduled other patients to get her on the schedule for tomorrow but Lucy's surgeon didn't feel like it was safe. She's only 2 1/2 weeks post op and if they decided to put a stent in during a cardiac cath it could tear where the surgeon worked before. Which would be catastrophic for Lucy. We're trying not to look too far ahead but it's hard not to. Lucy is still in heart failure and could remain so for months. This week was the first time anyone has talked to us about a possible heart transplant for the future. We still have no idea when we'll be going home.

Many looks of Lucy

2011-08-15T20:04:00.001-05:00

Sorry to be a "Debbie Downer", wah wah. But this post pretty much is.

This is Lucy with a pig nose. It only lasted an hour or so.

But this is cute right?

Then they changed it to this dinosaur look. I particularly hate this one but it stays on the best. See the white strap under her eye, well it's super tight and often slips into her eye. She hates it.

I never took a before picture, and it's a good thing. Two weeks ago her chin and neck were super blistered. They think it's from her being in the O.R. for so long.

Daddy holding Lucy for the first time in 12 days.

This has been a rough week. We got a bill for an enormous amount of money from the hospital the girls were born at. ( Yes, more than a year later.) It should have been covered by our insurance but because of a silly mistake we made they are denying coverage. Awesome.
Lucy has been acting super depressed. She's coming off a lot of the drugs so she's a lot more aware of what's going on. She's really mad at Chuck and me. When I held her today she wouldn't look at me. She kept whacking me away. It really is the worst feeling in the world when you no longer are able to comfort your child and they are so miserable. With every surgery Lucy has had respiratory problems coming off the ventilator. Every four hours a respiratory therapist comes into Lucy's room, whacks her on the chest and back for 10 mins or so, sticks a tube through Lucy's nostril and down her throat and suctions. It's horrible. My dad was there Saturday night and brought him to tears.
The surgeon left the day after Lucy's surgery and didn't get back until today. So we've kind of been waiting in the dark. We didn't learn a whole lot. We've been waiting for news about Lucy's next surgery. The surgery would require going through her side, through the ribs and lungs to get to her right collateral. Then they would tie that collateral into her Right pulmonary artery. The MRI results show that there is narrowing in the artery in two places. This would means the odds of this being a worthwhile surgery go way down. If we do the surgery it could mean a lot of maintenance in the future with lots of cardiac caths. Chuck and I both feel pretty good about admitting defeat. We don't want to put Lucy through more useless surgeries. If we don't do anything I think it will mean decreased lung function for the rest of her life. I'm not exactly sure what it will do to her heart. No one is deciding anything quite yet. Lucy will have another cardiac cath in maybe a month or so. They'll figure out how much oxygenated blood is going to her lungs without that collateral. We'll have more to make a decision from there. They'll also be stenting her left pulmonary artery and hoping that it helps get more blood through.
People tell me all the time that this must be a lot harder on me than on Lucy. I understand why they do. But truly it's harder on her. Lucy, you get all the credit my dear. You are a much stronger woman than me.

Going ons

2011-08-13T21:54:00.001-05:00

So Hazel has this weird long piece of hair in front. I finally caved and cut it. She's been having a really rough time with Lucy gone. Today I showed her pictures of Lucy and she gave them kisses. So sweet. The other night I burst into tears when I was putting Hazel down to sleep. She reached out toward where Lucy has been sleeping and started screaming. She usually does okay with Lucy gone but this time has been a lot harder. When Lucy initially was admitted Hazel was really super clingy when she'd see me. Now she hits me in the face or scratches me. Ive never heard of a one year old being so violent. Hazel has started walking a little but mostly walks around on her knees. It's so funny.

This picture was taken on Friday, 9 days post op.

That thing on her head is called CPAP and she hates it almost as much as the ventilator. It's still helping her breathe a lot.

A lot of people have asked us when we'll be going home. The truth is, I have absolutely no idea. We don't know when her next surgery is going to be. They are starting to lead us to believe it will be a few more months. We don't know if they are going to keep her here as long as she's in heart failure. If so, we'll probably be here awhile still.

...and again and again and again

2011-08-11T08:42:00.001-05:00

Lucy had such a great day yesterday. Every surgery I go through a period where I don't think my child is coming back. It's the worst feeling in the world. Yesterday Lucy came back to us. They brought her this crazy toy with fiber optic lights. We thought it looked like repunzel's glowing hair. She totally got it too and would laugh when we'd put it on our heads.(as much as you can laugh when you're intubated.) We think she'll be extubated today. Yeah.

Smiley girl.

Gammy with Repunzel hair.

So here's the general update as best I can give it. We were initially told Lucy would be having another surgery yesterday. We were told this by her surgeon. The man was out of town yesterday so we're not sure why he would say that to us. They did an MRI to see if they could get to the right Collateral through her side. They decided the collateral may not be as big as they thought and may wait a couple of months to do this next surgery. Personally I think this is a bunch of crap and I'm anxious for her surgeon to get back so we can chat. Lucy is still in severe heart failure. We thought that at least one of the three things the surgeon was planning on accomplishing had been successful but the results of the MRI show that that didn't even work correctly. (insert swear word of choice here)
In other news my cousin Noelle is sending her newborn baby Emily into surgery as we speak. Same heart defect as Lucy. They are even in the same ICU. They could use some prayers today. If you want to read their story their blog is in my sidebar.(Because Nice Matters)
It's in the simple peaceful moments like yesterday that I know my Heavenly Father is aware of our struggles and wants to bless us. I know a lot of prayers have gone up for Lucy and for Emily. I have seen so many miracles this year and I'm praying for some for my cousin too.

Lucy 5 days post op

2011-08-07T22:59:00.001-05:00

Lucy is doing better today than yesterday. For the first time I started wondering if I was going to have to say, "enough is enough." My mom had asked me what I'd do if the next surgery was unsuccessful or if they came back to tell us that there was nothing more we could do. I don't think any of us are ready to give up on this little girl.
The nurse tonight told me they think he wounds under her neck was an allergic reaction to something they used during surgery. They are pretty bad and they are treating them like 1st degree burns.
Other than that things are seeming to be going better. It's just frustrating because I know we're just sending her right back into surgery soon.
She opened her eyes for me for the first time tonight. I didn't really see Lucy in there yet. But doesn't she look more like herself? I love my little girl and I miss her.

- Posted using BlogPress from my iPhone

Rearranging the furniture

2011-08-07T00:20:00.000-05:00

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).

Updates

2011-08-06T12:25:00.001-05:00

I don't even know where to start. Two weeks ago today Lucy was admitted to the ICU and two days ago she had her third open heart surgery and a cardiac cath. We spent 14 hours on Wednesday in the waiting room. They kept Lucy's chest open until today. While they closed her chest they also did a echocardiogram by putting something down her trachea. I don't get it. Her open heart didn't accomplish everything that they wanted so we have another open heart in maybe a week. They won't know for sure until after her CT scan. Although we're pretty certain.
Lucy's has had a number of setbacks but is doing okay. She had a fever after surgery and got up to 104 for most of the day yesterday. It broke during the night last night. They found an infection from her PICC line. She's going to need an IV of antibiotics for 6 weeks. Luckily she could home with that. They had to bring in the wound team to look as Lucy's neck. She's developed sores under her neck probably from all the swelling she's had. She also lost her pulse in her leg for awhile and her leg turned ice cold. They found out she has a blot clot and are giving her blood thinners for it.
Right now is such a difficult part of recovery. It's slow and feels like we're getting no where. I've learned I can't look too far ahead. One day at a time. Our new motto.

Welcome to Holland

2011-08-04T21:44:00.001-05:00

My mom found this on the Internet awhile ago and I think it explains how I am feeling and have been feeling all year.

WELCOME TO HOLLAND
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

All my kids together

2011-07-30T09:45:00.001-05:00

They don't generally allow kids under the age of 5 in the ICU but we're grateful they've made an exception for us. Lucy loves having them there.

YouTube Video

- Posted using BlogPress from my iPhone

Faith like Lucy's

2011-07-28T01:21:00.001-05:00

Today I had a beautiful insight that I know was the spirit talking to me, bringing me comfort. If I don't write it down now, it won't be able to help me and I might really need this soon.

I was standing next to my daughter in the ICU and a nurse was doing something to her that was very scary and painful. She looked at me with those eyes. I know if she could talk, she would have said, "stop them mom! Help me. Why are you letting them do this to me. I know you love me so why aren't you stopping this."

In my mind I answered her, "Lucy I love you. I wouldn't let this happen to you if I didn't know it was helping you. You have to go through this if you are going to be healed. It won't feel like this forever. This will help you get better."

She kept her eyes on me and when the nurse was done I scooped her up and held her tight. She hugged me back, even though I let her go through that pain. In that moment holding her I knew I needed the faith of this child.

Today I wanted to cry out to my Heavenly Father, "Fix this! Don't put my child through this. Why are you letting this happen? I know you love us so why would you do this?"

It was then I realized I had answered my own questions. "Eliza, I love you. I wouldn't let this happen to you if I didn't know it was helping you. You have to go through this if you are going to be healed. It won't feel like this forever. This will help you be better."

We all are going to be given trials that will test us. If we have faith Iike Lucy, our Heavenly Father will be there waiting to pick us up. We have to keep our eyes on Him even through the darkest and most confusing times.

We've been so blessed to be here at this time. We have the most amazing friends and family and I feel us being lifted up by the prayers of so many. In the past when bad things happened to those I loved, I would ache for them. It's easy to think that our worry isn't helping anyone. I believe we can literally bare one another's burdens just as our Savior did for us. I have never heard this taught, but during hard times with my daughter, I have felt my burdens become light. I feel people carrying the worry with me. Thank you.

- Posted using BlogPress from my iPad

Third open heart surgery

2011-07-27T16:28:00.001-05:00

I'm not sure how we got here, but here we are. Lucy will be having surgery most likely on Tuesday. She will stay in the ICU until then. They have decided not to send her to Stanford.(at one point this was a possibility) I've never more uncertain about Lucy's future. Chuck has cancelled his rotation in Virginia next month. The doctor didn't hold back this morning. He let us know how risky this is. We are just praying she survives and hope everyone else does the same. I will accept whatever the Lord has planned for her but for now I'm just struggling with how this could happen. We are glad we're here. We've had an outpouring of love from our friends and family.

YouTube Video

- Posted using BlogPress from my iPhone

Lucy's feeling good

2011-07-25T10:59:00.001-05:00

Lucy is like a new woman since we got here. I guess I didn't realize how sick she was until she started feeling better. The meds they have been giving her have really done amazing things. Yesterday she didn't need her NG tube at all during the day! She drank 4 ounces at one time without any coughing or spitting up. She normally would gag on anything she ate or drank and there hasn't been ant of that. It's weird. We've never really thought this was a reflux problem. The problem is the drug that is helping, milrinone, is not meant to be taken long term. She can only have it while she's in the ICU. It's kind of a dangerous drug, one of the risks is fatal arrhythmias. She's been on it twice before with no problems. So I'm worried how she'll do when we leave. The drugs won't really fix the problem, they will need to do that surgically. She's pretty happy and is being a little nicer to the nurses.

Trying to crawl. What a tangled mess!

Looking pink.

- Posted using BlogPress from my iPhone

Heart Failure

2011-07-23T18:01:00.001-05:00

After looking at those pictures from my last post, I just knew something was wrong. I just couldn't believe how puffy Lucy looked. Those pics were posted right after a phone call I got from my Dad. He, my mom, big sis and niece were on their way to the airport when he called. He suggested I take Lucy in for a chest x-ray. I kinda yelled at him. Actually, I cried at him but in our family it's interpreted the same way. It stressed me out. With my parents on their way to France and my other sis in Lake Powell the idea of getting a chest x-ray way too stressful. When you get told nothing is wrong so many times you begin to believe it. But after the phone call and looking at those pictures I really felt like we needed to do something.
When Chuck got home that night I had him call Kansas City. I was shocked when they patched him through to an actual cardiologist. He told us to take Lucy to the ER in the morning. So we dropped the other kids off at Chuck's parents house and we headed up o Salt Lake.
We had multiple tests done. They all came back pretty normal except for one. Her BNP. The test measures how hard the heart is working. A normal range is between 0-100 anything above that is considered heart failure. Anything above 900 is considered severe heart failure. Lucy's was 3000. She is now in the ICU on a drug called Milrinone. She was on it after both of her open heart surgeries. It takes some of the work off the heart. She had another BNP this morning and it was down to 2000. So the drug is helping. Because it's a three day weekend here in Utah they won't be giving her an MRI until Tuesday then on Wednesday the will discuss the possibility of a cardiac cath and hopefully have it on Thursday. My parents get back on Friday.
The scary thing is that there was nothing that suddenly changed. She's been grunting a little more than usual, more puffy than usual and for the last two weeks her sats were a little low. But nothing that was screaming "heart failure." We even took her to a pediatrician who told us she wasn't in heart failure a week and a half ago.
The cardiologist kept telling us that it is really good we came in when we did. It makes me sick to think we could have missed this. We were going to spend the weekend at my parents cabin. It would have been really easy to put this off until after our little trip to the cabin. I so glad we listened to that little voice telling us something was wrong.

Birthday photo shoot.

2011-07-21T17:01:00.006-05:00

Lucy did not want to be put in a suitcase. To tell you the truth, I didn't want her in a suitcase either. Doesn't make a lot of sense to me.

One year ago today....

2011-07-20T11:44:00.004-05:00

Dad, Mom and Gammy put our fears aside and headed to the hospital. You were only two weeks early.

Hazel came first stealing the birthright. If I hadn't had a c-section Lucy would have come first.
Lucy was second and came what felt like seconds after Hazel. There were so many people in the room.
I got one quick look at Lucy before they took her up to the NICU. Dad went with you Lucy. I didn't want you to be alone.
Lucy your oxygen sats were way better than anyone expected but they moved you to Children's Mercy a couple hours later just to be safe. Dad followed the ambulance in his car.
I don't remember how I got back to the recovery room, or how sweet Hazel ended up in my arms. I had so much fun bonding with Hazel for the next four days and I couldn't wait to do the same with Lucy.

I knew this year was going to be hard. I did everything to prepare myself for just how hard it would be. Until you go through something, you just can't know. We've seen greater miracles than I could have ever hoped for.

Hazel: We had no idea that our "healthy baby" would need major surgery when she was two months old. Other than being born with a fused skull Hazel has had no health problems. She is a lot like Jack. She loves to scream whether she's mad or not. She likes to Ham it up for strangers but in general is a pretty serious little girl. She's almost walking and crawls everywhere. She has said a few words like: milk, no, dog and Mama and Dada. She already prefers pink to other colors and loves watching Tangled over and over. She is absolutely into everything! This girl is fearless unless we're taking about water which she is deathly afraid of. Bath time with her is like pure torture for both of us.

Lucy: She is our smiley girl and generally loves when people are around. Since her last surgery she's developed a huge fear of strangers and especially nurses. She is happy despite some crappy circumstances. She isn't talking yet except for Mama and Dada. She has just started crawling and it reminds me of the way baby foals look when they just start walking after they're born. We couldn't be more proud of her.

I rarely even think of the girls as twins. They are so different and we have to treat them so differently. People ask all the time about their special twin connection but so far I'm not seeing it. Lucy pretty much hates Hazel. She get's super jealous that she is able to move so much better and we think that's why Lucy tries as hard as she does. Hazel hates when I hold Lucy and not her. It's a bit exhausting. Lucy has gotten pretty spoiled and cries when Hazel touches her sometimes.

Birthday Party

2011-07-18T12:19:00.004-05:00

Happy Birthday! We had a combined birthday party with some Platt cousins this year. I can't believe my little babies are going to be a year old this week. I've been really emotional lately. I wasn't always sure we'd get to celebrate this birthday with both of my girls. We're so blessed to have them in our lives. Even when I'm ready to rip my hair out I'm so grateful to have these little girls.

Hazel and her huge blue eyes.

Lucy cheesing it for the camera.
The fam.

Here we are

2011-07-13T14:06:00.002-05:00

I've been meaning to post for awhile now but I've been so exhausted. Chuck is doing his OB rotation right now and is working pretty long days. Lots of babies being born here in Utah Valley. I think being here is good for everyone but it wears me out. Jack is loving playing with cousins, taking swimming lessons and going to Little gym. Hazel and Lucy were pretty freaked out by all the new people when we got here but they've gotten over it.

Lucy isn't doing too hot. I took her in to get weighed the other day and she was down 3/4 of a pound. We called the doctor who is in charge of her feeding schedule and I was told it was my fault because I wasn't feeding her enough. I was super annoyed. My life pretty much revolves around feeding Lucy and getting enough food in her. The problem is she throws up a lot. It's not spit up either. It's violent vomiting. It's so sad, she's always so tired and sweaty after she throws up. It's like having a child with the flu, all the time. I'm so discouraged because she never did this before she got her NG tube. I thought that after her surgery she would be able to come off the NG tube or that her weight gain wouldn't be as much of an issue.

The cardiology appointment we had before we left Kansas City didn't go as well as I would have liked. Her cardiologist who is generally pretty optimistic left us feeling discouraged. He thinks Lucy won't be able to make it until she's six for her next surgery like we thought. Lucy is having another cardiac cath in Sept. They'll be able to get a better look at her heart and possibly put in a stent. They will also get rid of her collateral arteries. We hope this will bring her oxygen saturations up. Right now she running in the mid to high 80s. The cardiologist stressed how important it was to keep her weight up. Ug.

My girls are almost a year old. When they were born we told ourselves we just have to get through the year and then things would be so much easier. In my mind I really felt like at a year Lucy would either have died or be mostly better. I was so worried about losing her I never considered how hard it would be to watch her be so sick. Right now I'm working on a mind shift. It's been a little hard to come to terms with the fact the my daughter isn't fixed despite having, "a full repair." I hear so stories of kids with this conditions where the mom will say, "You'd never even know anything was wrong." I definetly don't feel that way and I doubt I ever will but I'm grateful for what we have. We have been very blessed and being in the hospital so much you definetly see others who have it so much worse.

Lucy is extremely jealous of Hazel's ability to crawl. As much as I hate watching Lucy cry because she can't keep up, I know it's motivating her to try harder. Right now she just doesn't have the strength to crawl but she's making progress and she tries so hard.

This time of year is particularly significant to me not only because of the girls' birthday but because July is when my brother was born and died. If he hadn't been born with a heart condition he would have been 25 this year. My parent's never knew why they had to lose their child and go through such a difficult thing. I know that my parent's wouldn't have been able to be there for me the way I needed them to without that experience. Not many people could have given up so much for their grandchild. I couldn't have gotten through this year without my parents. They truly showed what bearing one another's burdens means. I didn't have to worry alone. I really believe that when we carry someone else's burden it becomes easier from them. The day Lucy was put on life support, no one was able to comfort me. My parents and husband were all a mess but for some reason I was okay. I really believe it was the prayers of so many people. Not only the prayers, but the act of carrying the worry for me. I know my brother was around a lot this year. There were special moments in the hospital when I knew he was there. My parent's experience has helped give me the faith that my family's trials will serve a greater purpose.

Here in Utah

2011-07-06T13:12:00.001-05:00

- Posted using BlogPress from my iPhone

Lucy comes home

2011-06-25T23:04:00.001-05:00

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.

- Posted using BlogPress from my iPhone

2 weeks later

2011-06-20T16:35:00.001-05:00

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?

- Posted using BlogPress from my iPad

Happy Father's Day!

2011-06-19T17:12:00.001-05:00

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.

- Posted using BlogPress from my iPhone

Waiting for news...

2011-06-18T21:47:00.001-05:00

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

2011-06-17T20:06:00.001-05:00

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.

- Posted using BlogPress from my iPhone

In and out

2011-06-16T19:32:00.001-05:00

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

2011-06-16T07:25:00.003-05:00

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

2011-06-15T19:15:00.001-05:00

(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

2011-06-14T14:22:00.001-05:00

To see this scene again

Goodbye PICU!

2011-06-13T22:00:00.001-05:00

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

2011-06-12T17:29:00.003-05:00

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

2011-06-09T10:04:00.006-05:00

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

2011-06-07T23:06:00.005-05:00

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!

2011-06-07T13:06:00.001-05:00

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

2011-06-04T21:49:00.002-05:00

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

2011-06-02T16:36:00.001-05:00

Created with PhotoShake

When they think we're not listening...

2011-06-01T16:41:00.003-05:00

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.

Surgery date

2011-05-29T23:55:00.001-05:00

We found out on Friday that Lucy has surgery scheduled for June 6. That's only one week away! We were so nervous we wouldn't be able to get her in before July (when Chuck is supposed to be in Utah for a rotation.) Now that it's here I'm terrified.

I know that Heavenly Father hears and answers prayers. I know that even though my faith is not always enough, He is merciful and forgiving. I'm so grateful for all the miracles we've seen this year.

Waiting

2011-05-22T01:24:00.000-05:00

Bone crushing stress. That is the best description of how I'm feeling. When I talk like this Chuck let's me know how dramatic I'm being. The truth is I don't need to add any drama to life right now. It's doing a fine job on it's own.

We were supposed to hear from Lucy's cardiologist on Friday but he never called. The cardiologist met with the surgeon to discuss a date and a plan for Lucy's upcoming surgery. We have our spies and actually know a little bit of what was said in that meeting. But no date. Here's where the stress comes in. I don't even know how to describe it. Anytime I allow myself to think about her surgery I feel I'll. I start thinking about last time. How hard it was. I know things could be totally different this time but they could also be worse. This is my test of faith.

I keep telling myself, "it will all work out." And if it doesn't, it will still work out.

I keep thinking about my mom. When she was my age her baby with heart defects didn't survive. I think how much worse it could be. How so many people's kids are worse off than mine. Gratitude is sometimes the only thing that makes this bearable. But it's not always easy to get there.

The stress doesn't effect Chuck like it does me. I'm glad. I don't know what I'd do if we were both basket cases. It used to bother me. I've come to appreciate his apathy. He knows this. Now I only hope one day he comes to appreciate my dramatics. I highly doubt it.

The girls haven't been sleeping well. I looked in Hazel's mouth today and saw two new teeth, so I'm hoping that was the cause, at least for her.

I think for a couple of nights after we came home from the hospital Lucy was having nightmares. She has trust issues. It's really sad. She hates when anyone touches her arms and will pull away.

We have physical therapy twice next week which she hates. She has improved so much since her last visit though. We,ll find out if she needs special pants to keep her from doing the splits. Have I mentioned she does the splits? It's creepy. She looks like a little baby gymnast.

Hazel is not smiley at all. I think she is so funny. She has one really long piece of hair on her head that my mom and chuck keep telling me to cut. It's right over her dime size soft spot that hasn't closed yet. I asked the neuro surgeon last time we were in why that was happening and he told me I was crazy. I actually love going to the neuro surgeon's. It's always good news. She's still on track to get her helmet off in sept.

Jack is turning out to be a sweet little boy. He's so naughty but we'll just pretend he isn't. He's spelling and writing words. I'm so proud. He can verbally spell 2 or 3 dozen words. The funniest is when he just starts spelling random words. One day he was walking around, " writer, w-r-i-t-e-r." I have no idea where he learns things sometimes.

Its time to wrap this up. I didn't intend to write so much.

2011-05-19T01:30:00.001-05:00

The cath lab

2011-05-17T01:53:00.000-05:00

Lucy had her cardiac cath today. One of Chuck's best friends just happened to be doing his rotation this month in pediatric cardiology so he was actually able to sit in on Lucy's procedure. It actually made me feel much better about the whole thing. Handing your baby over to strangers is never easy so it was a little easier knowing someone we knew was there with her. It was a little hard being back in those hallways and waiting room where so much has happened before. My mom got teary eyed several times today and the woman is a rock. She may have been a crier in her younger years but never in my memory.
The cath went well. Lucy's cardiologist who also was the one who does the cath lab took us in a small room to show us the results. Most of you know that Lucy had open heart surgery at 3 1/2 months to have a shunt placed. The purpose of the shunt was to get her pulmonary arteries to grow. Her right artery has done a great job growing but her left hasn't grown at all. This is going to make her full repair a little more tricky. The surgeons may decide to put in a conduit which would be made out of some type of animal parts. We always thought Lucy was part pig. Anyway, this means Lucy will be probably need surgery in 5 years or so to replace the conduit if that's what they end up doing. Even if they don't do it she'll still probably need another open heart surgery as a child.
We're in a tough spot right now. Chuck is supposed to be in Utah by July first for a rotation. Then he is supposed to do air force rotations in aug. and sept. So ideally we need her surgery done like yesterday. There has been talk of her waiting until we get back but I know she won't be able to hold out that long. I am just praying it works out. I really don't want to do this without Chuck.
I'm at home with jack and hazel. Chuck is spending the night at the hospital. On Friday Lucy's cardiologist will meet with the surgeon's and make a decision.

The other Bunny

2011-05-10T14:48:00.004-05:00

It's been awhile since I've given a Lucy update. She is doing awesome! Last month when we went to the cardiologist I was pretty discouraged because she hadn't been gaining weight. Her cardiologist wanted us to see nutrition again to come up with a plan to get her to gain more weight. We weren't able to get an appointment until today. She's gained more than a pound since our appointment last month. The doctor was super impressed. We've been trying so hard to pump Lucy with extra formula. She also moving like crazy. She's not crawling like her sister but yet but she's getting a little closer everyday. I think her physical therapy is paying off. She actually has someone come to the house to help her in addition to going to Children's Mercy. It's been good to have two different therapists because they both seem to pick up on different things. Lucy has her cardiac cath on Monday and then next wednesday we'll meet with cardiology to talk about the results. Even though Lucy could probably go a little longer without her repair I don't want to put it off any longer. With her first surgery she was so sick beforehand. I think that is why she had such a difficult recovery. I want her to be as healthy as she can going into this next OHS. Go Lucy!

We finally got some cute Easter pictures with Lucy too.

Who says we don't look alike?

A whole lot of pictures.

2011-05-04T21:58:00.008-05:00

Chuck ran a 5k on saturday around the temple. It was a lot of fun cheering him on.

Jack and Chuck had a birthday on Monday. Yeah!!! We celebrated Jack's birthday on Saturday. He's obsessed with Blue's Clues so that was the theme. It was a bit challenging since they don't make Blue's Clues stuff anymore. We had fun.

Just another appointment. We seem to average about 3 a week these days.

I know this picture is blurry but I love this face. She was being such a little ham that day.
Girls on the town.
Easter.

Crazel without the helmet.

Another Cardiac Cath and OHS

2011-04-22T22:29:00.005-05:00

Cardiology scheduled Lucy for her third cardiac cath on May 16th. They are trying to get images of her heart so that they will know what they have to work with when they do her total repair. We are really pushing for her repair as soon as possible. We hoping it will be only a week or two after the cath.

It's getting more and more difficult to get Lucy to eat. If you don't make a conscious effort to push her, she won't get enough. She almost uses the feeding tube exclusively. She keeps getting sick which is super frustrating because it's so hard to get her to gain weight when she does.

I'm beginning to understand that the term full repair is a little deceptive. They are planning on leaving her VSD (the hole in her heart) open. In a few years they will mostly likely go in to fix it along with fixing any leaky valves.

I'm grateful for what they can do with the heart. The older my girls get, the harder it gets to watch Lucy fall behind. It will be such a relief to have this surgery behind us.

Hoppy Easter from Hazel!

2011-04-15T14:14:00.009-05:00

When I was at the doctor with Lucy the other day my friend watched Hazel and Jack. She did this adorable shoot with Hazel. Now we just need to do some of Lucy.

Cardiology Appointment

2011-04-13T19:51:00.002-05:00

More waiting. Lucy's doctor is going to have a meeting with the surgeon on Friday to discuss surgery. Basically we were told today that Lucy's pulmonary arteries are not big enough to do the full repair without needing additional surgeries. He started talking about the possibility of replacing her shunt before her full repair. We kind of all lost it at that point. None of us want to do that again. Our other option is to do her full repair and leave her VSD (a hole in her heart) open. She will need another surgery later on to repair this. We really want to have her surgery soon so she can recover in time for this summer. We're supposed to go to Utah in July so Chuck can do a rotation there. Then in August and September he will be doing rotations for the air force and the rest of us will stay in Utah. The problem is Lucy's arteries still might not be large enough. So for now we just have to wait.

Craniosynostosis

2011-04-09T17:48:00.013-05:00

I've wanted to post these picture for a long time. Hazel was 3 days old when these pictures were taken. We had been calling her football head and hedgehog. I had no idea that something was really wrong until a neonatologist gave us a referral to see a neurosurgeon.

Craniosynostosis effects one in every 2000 babies born.

It's a deformity where the skull fuses prematurely.

Hazel next to her identical twin sister.

Hazel getting ready for surgery.

Hazel's head looked different right after surgery.

One month post op. She had blisters from her helmet initially.

Hazel's head a few days ago at her nuerosurgeon's office. Six months post op.

images from the week

2011-04-08T23:29:00.003-05:00

Hazel teaching Lulu to clap.

Lucy poops out pretty easily.

Sneak Peak

2011-04-08T23:27:00.001-05:00

Upcoming Events

2011-04-08T22:03:00.006-05:00

I'm completely done with Easter baskets and almost done with preparations for Chuck and Jack's birthday (It's the same day, did ya know? May 2nd) It may seem a little early but I've decided It's important that we celebrate this year and I'm not sure how much I'm going to feel like it in a few weeks.

Chuck has been jipped out of a good birthday for the last few years. Three years ago on his birthday I was in the hospital, giving birth. Needless to say Chuck was overlooked. The next year Jack turned one! I kind of forgot about Chuck again. Then last year I was determined to do something special but the unthinkable happened. One week before Chuck and Jack's birthday we were at the perinatologists office for the first time. He began to describe problems he thought he saw with Baby A's heart. He said he didn't know for sure but he'd send us to a cardiologists the following week. For a week I mourned for my baby. I don't remember much of a party for anyone. The day after their birthday, it was confirmed the fetus we had named Lucy would be born with a severe case of Tetralogy of Fallot. Bad birthday. This year we are facing another open heart surgery. Lucy meets with her cardiologist this week. From there we will most likely begin the process of making arrangements for her next surgery.

The anticipation of a child's surgery is horrible. Our experience after Hazel's surgery was so scary that I almost wasn't that worried for Lucy. I thought that surely we wouldn't have another scare as bad as that. How wrong I was. Lucy came out of the surgery because Heavenly Father wanted her here. Nothing the surgeons did could have saved her after things went bad. I try so hard to remind myself that Lucy's little life in the hands of a loving Father in Heaven. A father that I am striving to trust completely.

I am a member of The Church of Jesus Christ of Latter Day Saints. We recently had a conference where we heard from our prophet and other great men who receive revelation from God for us. The talks that were given felt like they were meant for me. I started listening to the first session about an hour late. The first thing I heard was a story about a little girl in an ICU. She described the angels that were there to her family. A few days earlier my mom and I had been talking about Lucy's angels. I'm sure my own brother who died as an infant has been looking over her. I missed most of Elder Scott's talk and felt the impression that I needed to go back and listen to it. It ended up being my favorite talk of the whole conference. It was on marriage and family. He shared a story about his own child that died of a heart defect. It made me feel like my Heavenly Father is aware of me and knew what I needed to hear. I love general conference, there is nothing else like it. Making people want to be better without passing judgement or slathering on guilt is such a gift and it seems like every speaker somehow accomplishes it.

I'm anxious for the appointment this week. Lucy has been slowly going downhill. She passed out yesterday in Chuck's arms. He isn't too concerned but I'm feeling like Wednesday can't come soon enough. Did you know Shaun White has Tetralogy of Fallot. It's true. And I saw him the other day at Festival Foods (Our grocery store) :)

Sorry for the length.

Mom in a candy store

2011-03-31T14:57:00.003-05:00

This is one of my favorite spots in Kansas City. Christopher Elbow makes these beautiful chocolates. There are only two stores, the other store is in San Francisco. They have flavors like: fluer de sel, tupelo honey, lavender, cinnamon hazelnut, balsamic vinegar, rosemary, mango and tons of others. I've always been a sucker for packaging. Almost too pretty to eat. Doesn't this make you all want to visit us?

My personal favorites are the Venezuelan spice and the lime.

We also passed this little restaurant today and I had to take a picture for my little Lulu.
There aren't many opportunities for us to get out but we love to take advantage of living here when we can.

Life lately

2011-03-31T10:00:00.006-05:00

I've been bad a blogging lately. Life has been a little stressful the last couple of weeks but we're all doing pretty good. Chuck is facing some stress at school, but we've tried to not worry about things that are out of our control.

Lucy started feeling sick on Friday with a fever of 103 and four days later she was still running a really high fever. They sent us to the hospital to have her blood work done. It took 9 different nurses and an hour and a half of trying before they finally got enough blood to run Lucy's labs. They eventually got it from her head (which is what I suggested from the beginning). Lucy has kinda hated me since then. We've also had to replace her NG tube twice in the last two days so that doesn't help either. She's pretty much terrified of everyone lately. I think she has nightmares. So sad. In better news, Lucy is sitting! I honestly have never been more proud. It felt like this would never happen. She still doesn't bare weight on her legs so I expected sitting to take forever. She's very proud of herself and loves being able to play with the big kids.

We're getting a temple here in Kansas City. It's only 10 minutes from our house and in our ward boundaries!

Angel Moroni
Jack has been so much fun lately. He's starting to move past the hard stage.

He refused to wear this hat for Halloween but he loves it now.
Lucy sitting.

She doesn't like the flash.

Randoms

2011-03-15T00:26:00.007-05:00

We see a lot of bum around here lately.

Chuck and I celebrated our 5 year anniversary this past weekend. We were lucky to have my mom here to help with the kids. After the kids went down for bed we went to dinner at a fun little Italian restaurant where we completely ignored our weight watchers diet. Well almost. I was a little sad that I looked totally nasty and hadn't even showered, but beggars can't be choosers.

By the way can I just say dieting when you're stressed is like the worst thing ever. It's like I've lost all my ability to cope. Now I'm just a pill all the time. I can't even say it's baby weight I'm losing because I gained 15 lbs. after I had the babies. I'm the only person I know who loses weight while pregnant and gains it all the year after. Lame. Don't feel too sorry for me, I still eat chocolate everyday. It's good for my mental health.

Picture overload

2011-03-09T23:11:00.006-06:00

I know I haven't posted in awhile but I'm hoping to get back in the groove. We've had a crazy month. We had a cardiologist appointment today. Lucy has been gaining awesome weight. She made it to the 1st percentile. She hates her NG tube but it's doing its job. She keeps the tube in all the time but we only use it at night. We go back to see him in a month and from there we'll probably schedule her full repair. You think we'd be used to it by now but it doesn't get easier. I think the anticipation is going to drive us insane. We've also been potty training Jack which is a lovely adventure in itself. It's going to be a loooong month.

Jack is currently obsessed with Blue's Clues. It's actually motivated him to talk a lot more.

Classic Hazel. This girl does not get enough attention. That's what she'd tell you anyway. She loves to scream. She gets it from Jack. She's going to be all drama I know it. Of all my kids she seems to like me the best. Which can be good or bad. The mornings with her are the hardest. There is just no time to sit and play which is all she wants.
Hazel adores Jack. Sometimes they will just sit and laugh at each other. It's the funniest thing I've ever seen.

Hazel trying to teach Lucy how to be a big girl.
I can't believe I haven't posted since Lucy got her NG tube. This was her after she came home from the hospital this last time. (She was in the hospital twice last month.) Those extra circle stickers are from being on oxygen when she was at the hospital.
Both girls and Jack love this Jessie doll.
You grow girl!
She can barely touch and it needs to be raised for Hazel.
This is what we've rigged to give Lucy her feeding at night. She just gets to eat normal during the day and at night she gets a continuous feed. One perk is that she will often sleep through the night. We still have to get up to change the milk every few hours.

Chuck's happy.

Recent news

2011-02-22T14:55:00.004-06:00

I know I haven't blogged much lately. I try to avoid it when I know I'll whine. I've felt very whiney lately. We've been home with Lucy just over a week now. She's been gaining weight and we're really happy about that. The truth is I hate the NG tube. I know it's good for her but it's made our lives that much more complicated. She feeds by mouth through the day and then we give her a continuous feed through the night. She doesn't tolerate the volume of food very well and will often throw up. We have to get up every four hours to change the milk. She likes to kink the cord when she sleeps which sets off an alarm. Then it seems like it will wake one baby up and then that baby will wake the other baby up. You think the girls would be use to each other by now but they seem to get more and more annoyed with the other. We've been getting next to no sleep. The girls screamed for hours last night. They both have colds. Lucy is really what makes the equation so difficult. She's not "allowed" to cry and so she's become totally spoiled and is extremely difficult to get back to sleep. My experience with these girls is so different from Jack. Jack was a really hard baby except for the fact that he was an amazing sleeper. He started sleeping through the night at 7 weeks. I miss that. It's not so bad when my mom is here and we can split up the night in shifts but she is currently in Cabo. Booo. We miss you Momma!

In other news, Hazel looks so cute in her new helmet. It's a lot bigger than the last one. We still need to think of how we are going to decorate it. Jack is still obsessed with letters. His new favorite words are JOG and STOP. I wrote those capitalized because that is how Jack prefers them. I don't think he even knows what jog means but he really likes spelling it with his magnets and insists on sleeping with his magnet letters, J-O-G. Weird kid.

Our biggest stress right now is the upcoming surgery. Chuck and I are both a little terrified, especially considering how difficult the last one was. We're trying to have faith and to let go of what is out of our control.

Helmets, NG tubes and MRI's oh my

2011-02-10T07:26:00.002-06:00

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

2011-02-07T21:02:00.002-06:00

Hazel Monster!

2011-01-30T18:32:00.002-06:00

What happened to my sweet baby?

Her first tooth, that's what.

In the past, when mother's tell me their baby was teething and that must be why their child is misbehaving, I really didn't get it.

Jack got fussy but he was never this bad.

Lucy has been sweet as ever.

We're awaiting her first tooth.

Here Mom

2011-01-26T12:12:00.002-06:00

Hoo's the cutest?

2011-01-13T20:43:00.001-06:00

Lucy's appointment

2011-01-07T21:46:00.002-06:00

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

2011-01-06T00:05:00.002-06:00

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.

What I'm really thinking

2010-12-31T02:16:00.000-06:00

When people talk to me these days I am often told, "I have ALWAYS wanted twins."

May I just point something out. This is like telling the kid with crooked teeth, "you're so lucky, I've always wanted braces and headgear." For the record I did tell a kid that once. He didn't like it.

I love my children. I'm grateful for them. But I also would have loved them one at a time....spaced 5 years apart. Just saying.

2010

2010-12-30T01:36:00.008-06:00

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

2010-12-26T23:14:00.003-06:00

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

Snow!!!!!!!

2010-12-23T22:28:00.003-06:00

Only in Utah could it snow this much and pretty much be gone the next day. I'm glad Jack was able to get out and play in it a little. He mostly just wanted to eat it.

Hazel's New Helmet

2010-12-23T22:23:00.006-06:00

She's actually had this new helmet for a couple weeks now. She'll get her next helmet in a few months.