Saturday, July 30, 2011

All my kids together

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.

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Thursday, July 28, 2011

Faith like Lucy's

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.

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Wednesday, July 27, 2011

Third open heart surgery

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.

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Monday, July 25, 2011

Lucy's feeling good

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.

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Saturday, July 23, 2011

Heart Failure

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.

Thursday, July 21, 2011

Birthday photo shoot.

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.

Wednesday, July 20, 2011

One year ago today....

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.

Monday, July 18, 2011

Birthday Party

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.

Wednesday, July 13, 2011

Here we are

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.

Wednesday, July 6, 2011