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.

Many looks of Lucy

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

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

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

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.


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Rearranging the furniture

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

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

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

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

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

Updates

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

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.