More drama

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.


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Two Months

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.

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.

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

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

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.

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

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

And a mobile version here.

Lucy's Obituary

Lucy Blair Hutchings

Practically Perfect in Every Way

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

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

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

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

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

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

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

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

The source of our joy and sadness

We love you Lucy.
We miss you.

We want you back.


Please help us get back.
We love you.



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Goodnight Lucy

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

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

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.

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

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

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!

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!

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.





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Walk for CHD

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.

































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You're Fired!

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.


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Cath update

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

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.

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

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

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Finally...some good news!

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

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.