Thursday, April 26, 2007

Wow! These past 2 weeks have been exhausting, exciting, terrifying wonderful all at the same time. The entire process went very smoothly and we felt very prepared by the surgical staff and by friends who have been through this as well. I don't think we will ever be the same. I wanted to share this with you.

The night before the surgery I don't think either one of us slept. We had to stop her feeds by 3:00 a.m. so that didn't help. We made it to the hospital by 6:00 a.m. and went straight to Surgical Admissions. Tom was parking the car in St. Francis' insane parking lot and Claira and I sat in the waiting area with several other people. I felt like there was a spotlight on her as she was the only child there. I wanted to tell everyone what she was getting ready to go through and yet I didn't want to talk to anyone either. My heart was extremely heavy. Very soon after we were escorted to a room where a nurse tech took her vitals and asked several questions about her medicines, etc. The anesthesiologist that took care of her came and introduced himself and said they would be coming to get her by 7:15 a.m. Fifteen minutes later two nurses in surgical scrubs came in holding a huge warm blanket to take her to surgery. I was a little surprised because I was waiting for someone with a hospital bed to come for her, but instead the nurse took her in her arms and said "she would take very good care of her". Somehow this helped soften the good-bye watching her walk away in what seemed like loving arms. Tom and I both were very robotic and strangely enough it didn't seem as difficult as we expected.
We knew we had a few minutes before they would start as they had several preparations to do first, so we went to the cafe for breakfast. Again ... I wanted everyone to know why we were there. Just 10 minutes before 8:00 a.m. one of Tom's co-workers called to tell us they had just said a prayer for Claira and the surgeon, Dr. Ranne. We hurried to the Family Waiting room where they had assigned a section for us to sit so the surgical team could communicate with us via telephone throughout the surgery. Mom was already there and I was very upset to hear that they had already tried calling us once and we had missed it. Just minutes later the nurse, Michelle, called to say they were beginning the surgery. I tried to control my thoughts, but instead I sat imagining what was happening at that very moment. Her life was changing forever.
The nurse called again to say that she had just gone on by-pass. We sort of sat in silence for a few minutes understanding what that meant. After that the nurse called every 30 minutes with an update. My Pappaw, his wife Louise and Tom's sister Jennifer came to wait with us. It really helped having them there because we had some great conversations. It would have felt that we were there for an entirely different reason if it weren't for Claira's little pink bear that I was holding. We were told that the surgery would take a total of 5 hours, but after only 2 the nurse called to say that Dr. Ranne was closing and that all of her vital signs were good. They would watch her for a few more minutes before taking her to the Pediatric Intensive Care Unit (PICU). We headed up to the PICU waiting room, not before saying good-bye to Pappaw and Louise. He tearfully said "take care of that little one" with a smile on his face. I think he'd had enough for one day.
Not long after we made it to the PICU waiting room, Dr. Ranne and his nurse assistant Debbie Lammert came to tell us how everything went. Gratefully all went well. He was able to use her own tissue to patch the holes and he said they were pretty good sized holes. He said the repair would make a big difference for her now. Tom shook his hand to say thank you and as I shook his hand I felt a surge go through my entire body. I didn't intend to be emotional, but I don't think I have ever thanked someone from the depths of my soul as I did Dr. Ranne. A few minutes later we were allowed to go back to see her. Neither one of us looked at each other, we just ran to the doors like we were in a race.
The PICU is a very intimidating place. Every room is divided by glass doors and every child is watched very closely with a video system and a tech who does nothing else but watch. When we first saw her she was surrounded by nurses. She was lying in a regular hospital bed, which made her look more fragile than ever. Thinking back on what the nurses were saying I believe they were watching us closely to see how we were going to react. They said many times parents faint. We were so grateful to see her again and know that she was done with that part that neither of us cared what she looked like ... at first. I remember scanning her body and soaking in everything that was going on. Then I noticed her tongue was hanging out of her mouth. That bothered me more than anything else. I kept asking if we could push it back in.

She looked like a "pin cushion" as her Aunt Annie put it. She was very swollen from the fluids and looked about 2 pounds heavier. I remember thinking she finally had fat thighs! Her arms and feet were strapped to the bed. She had an IV in her foot. An arterial line, which is a sort of an IV that goes directly into an artery to measure vitals, in her arm. Another IV in her forearm. There were two IVs going directly into her heart, which was later used to give her nutrition that is normally too thick for a vein to handle. A pacemaker was in place in case she needed it. Another tube was in her chest to drain fluid and blood from the surgery itself. We later learned that almost a foot of it was left inside of her. A foley cathetyr in her bladder which also measured her temperature. She was still requiring the ventilator to support her breathing, so her mouth was taped so that the breathing tube wouldn't move or be pulled out. And then finally she had the biggest NG tube we've ever seen to drain stomach contents. Even the nurses commented on how big it was! Obviously a necessity, but nonetheless not very pretty. I had to laugh at myself for being so upset over the size of the NG tubes she had before.

The first 24 hours are very critical and so we were only allowed in the room with her for 30 minutes at a time. Her nurse, Janie, was very good about reminding us. It was so comforting know she was there. Everytime we came back she was sitting at her side watching her very closely. It felt like she was the only child in the unit. That night we tried sleeping on the waiting room couches and decided the next morning that we would take Jennifer, Tom's sister, up on her offer to spend the night at her house since she only lived a mile away.

The next two or three days were very difficult for Claira and very hard to watch. This was the part we were not prepared for. Initially I thought she would be kept sedated for a few days before they would try to wean her off of the medicines. Instead they started the next day. The reason they do this is so they can wean them off of the ventilator. It's very important for them to start breathing on their own, not only for obvious reasons but also because pneumonia can set in very quickly if they're not careful. Every 3 hours the respiratory therapist would come in and give her a breathing treatment of Albuterol and then suction out the breathing tube to make sure secretions weren't settling in. She had a great deal of secretions in her nose as well because of the cold she had before the surgery. These treatments would trigger a cough and as she became more awake she would cry, except she wouldn't make a sound because of the breathing tube. It looked terrible and was very hard to watch. We were encouraged to leave when they were doing this so it wouldn't upset us and Tom tried to get me to leave a few times, but I couldn't. That night before we left for Jennifer's I came in for our last visit and saw her crying in pain. I had a hard time leaving because I was afraid the nurse wasn't watching her close enough. I know now she was, it was just the shock of seeing her struggle. I barely slept that night.

The next morning they had taken out the ventilator and she looked totally different. Still very sleepy, but awake and her little eyes were open wider. They let us put her t-shirt on and I got to bathe her. It was amazingly healing for both of us. She took the first bottle that was offered to her and ate 2 1/2 ounces! It proved to me how worn out she had been in the months before and why eating was so difficult. I'll never forget when she took straight breast milk for the first time. I felt that my hope of returning to breast feeding was a reality and that our struggle had come to an end. We stayed in PICU a little longer because of the amount of fluid that was draining from her chest tube. She had quite a bit built up in her chest and they needed to see a significant change. After she started feeling better I started noticing more and more the other children around us. There were several serious situations and it became a depressing place to be.
On Friday we left to go to the 2nd floor. She got to ride in a wheelchair with Dad.

On our way to the elevator, several of the doctors that had cared for her before said they hoped we wouldn't be back except for a social visit. Going to the regular floor was another adjustment because we went from having a nurse attend to her every need to sharing a nurse with 5 or 6 other patients. The response time was a little slower, but the nurses were still wonderful!
Saturday morning Dr. Ranne came to say that even though Claira was eating, it simply wasn't enough. She was only getting in an ounce at a time and she should be eating 2 ounces every three hours at a minimum. We would have to choose between putting the NG-tube back in or taking the surgical G-tube route. After he left I cried. The day before her eating had slowed way down and in our hearts we knew it was coming.
Sunday I went home to spend the day with the kiddos and my Aunt Julie who had flown in from Texas to help our family through this. The kids were doing well and were enjoying her. I could tell when I came home that they were feeling secure. They of course missed us and wanted us home. Tom stayed with Claira at the hospital and took her for a wagon ride around the floor.

After prayerful consideration and giving her 3 days to see what she could do on her own we went ahead with the 2nd surgery. This time it wasn't nearly as scary and it only took 45 minutes. Dr. Ranne came to talk to us again and despite the fact she had just come off of the ventilator a week before they were immediately able to wean her off. She had a hard time with pain that day because she wasn't kept sedated. She also had to wait 24 hours before she could eat.

On Thursday we started giving her pedialyte and then slowly increasing her intake of breast milk to 2 ounces at a time. Unfortunately, she reverted back to not eating. Until recently I had blamed myself for this, wondering if she would've continued eating had we done the NG instead. But, as explained by my good friend and experienced nurse Ann, this was by far the best option for her. The NG was difficult for her to tolerate and very uncomfortable. As she continues to heal she will get stronger and her interest in eating will grow. She already acts like she needs to taste everything we're eating.
Things went very well with her recovery from both surgeries. Friday night they gave her another blood transfusion using the blood they had left from mine and Tom's donation. Her cell count was low and needed an extra boost.
Finally on Saturday we went home ... but not before we met several other amazing families. Our neighbor was a 6-year old with leukemia and a beautiful bald head. A 5-month old named Emma who was Claira's roommate in PICU. She had downs syndrome and endured open-heart surgery 2 days after Claira. And another family who was spending their last few weeks with their 2-year old daughter who was dying from brain cancer. We will never forget them.

Thursday, April 19, 2007

It's G-tube Time

Well...She finally had to get a G-tube. We're not all that excited about it, but if it makes her a big fat healthy little baby girl, then we're all for it. She hasn't had anything for 24 hrs. now and I think she's about to come unglued. She was doing very well this morning (yeah, I had to go back to work this week) she was smiling at mom and recovering nice. Last couple of days, she's been a little cranky though, I'm sure it's the bed and being up there missing her big sisters and brother.

She'll have a big tube, well not that big, but it's big, sticking out of her abdomen for about 3 to 4 weeks and then we'll go in and have a little cap that's attached to her belly. That doesn't look to bad and you can hide it under her clothes. She'll eat what she can from a bottle and the rest will go down the tube. Poor little girl.

Hopefully if all goes well, we'll be home Saturday sometime.

Saturday, April 14, 2007

Still a Slow Process

Well Claira finally has her own room. It was hard to go from a one on one nurse to a nurse who has several patients. She smiled at us yesterday for about 5 seconds and then gave us that "what has just happened to me and why do I hurt" look. She eats a little here and there and sometimes not at all. We are hoping she starts to pick it up cause the Doc said if she can't get the hang of it soon then he'll have to put the G-tube in. Yuk!! It just broke our hearts when he came in and told us about the G-tube. He said if she can't pick it up in the next couple of days then he'll put her on the schedule for Wed. or Fri. Come on Claira you can do it!!

Today she smiled alot and has even been smiling at the nurses. I think she is feeling a lot better. She still has to have a shot of morphine now and then, but she is starting to feel herself again.

We are grateful for the prayers and for keeping us in your thoughts. Please include Clairas old room mate, Emma in your prayers too. She has down syndrome and had open heart surgery as well. She's a little fighter but is still struggling. We'll be in here for another week and if she has the G-tube then it will be another couple of days. And we're also grateful for Aunt Julie for coming in from Dallas to help out with the kiddos. Thanks Uncle John for letting her go for a few weeks. We owe ya!

Thursday, April 12, 2007

Slow Process

We thought we might be out of PICU today, but it'll still be another day or so. I think this is what Dr. Ranne was referring to when he said it would take her longer to recover. She had so much fluid from the congestive heart failure that it's taking "forever" to drain from her chest through the tube. She still gets easily agitated, however we're able to hold her more and are encouraged to do so to help move the fluid around a bit. Still eating too! We've had to slow down, though cuz Mom overdid it yesterday. Poor thing ... I was a little excited!

Thank you to everyone who has supported our little Claira. Monday, many people stopped and took a moment of silence at 8:00 am. Several guys from Dad's work had a prayer circle on her behalf and some of the teachers at Roosa Elementary school wore her t-shirt to show they were thinking of her. And her great-grandparents, Aunt Jenny and Mimi came to sit with us while we waited to hear the good news. We can't tell you how much this has meant to us.

Wednesday, April 11, 2007

On the Road to recovery

We are so grateful for all your thoughts and prayers. Claira is on a great track to recovery. She is weened off the ventilator and is now breathing on her own. She has a little oxygen but all her blood gases are coming back good. She opened her eyes this morning for the first time and was awake most of the day. She just looks at us all like what the heck did you do to me and why are you touching me. They have her on some morphine just to take the edge off of the pain. They still want to keep her responsive and moving to get all the fluid to drain from around he heart.

She's just such a little trooper and all the nurses are excited to see how well she's doing. She even ate from a bottle today and surprised us all. The speech therapist was shocked when we told her she hasn't done that for months now. So we're hoping this is the start of something new. Maybe this is what we need to be praying for now. We should be in PICU for about another day and hopefully get into our own room.

Again we're grateful for all your thoughts and prayers and keep em up. We want to come home soon.

Sunday, April 8, 2007

We're on our way

You'd think with this being our 3rd trip to the hospital that this would become second hand, however every other time we've been has come without notice. This time we've had time to think and worry and obsess over what we need to bring, how we'll take care of our family and how we'll take care of Claira. It's tough packing. My heart is heavy as I pack little t-shirts and socks, etc. I was trying to find something cute and comfy for her to wear home and then realized that it probably wouldn't be comfortable then because of her incision and stitches. Wow! We received blessings tonight and in Claira's she was blessed with strength to overcome and pull through this operation. Tom and I always talk about each other's feelings and if we're prepared ... she has no idea. Tomorrow her life will change forever. We have faith that it will be for the better.

This was a beautiful day to prepare ourselves emotionally, however. This morning after a very touching family prayer from Tom I wanted the children to have a way to understand what Christ went through when he suffered for us. I received an e-mail from a friend the other day and in it she reminded me of how Christ suffered all so he would know how to help us. So I shared that with the kids. I wanted them to know that the Savior know how they feel right now and he is with us, always.

Wednesday, April 4, 2007

No Turning Back ...

... not that we'd want to anyway. Everything's ready for her surgery Monday. Yesterday she had her visit with the surgeon, Dr. Ranne. He expects her to take a little longer to recover due to her "compromised heart failure" and enlarged heart. He is a remarkable man and I feel very safe knowing that he's doing the surgery. Throughout his office there were newspaper articles on the charitable heart surgeries he has performed in less fortunate countries. After we left his office we went straight to the hospital for her pre-op visit. She was treated like royalty! Everyone had to stop and see her and talk to her. We met with the anesthesiologist who said that her reactions to the last general anesthetic were normal. She will be needing plasma and platelets because of her low weight. This will keep her blood from thinning out in the bypass machine. They'll use our blood to prime the machine. Debbie, Dr. Ranne's assistant went over the length of time (5 hours) and our visiting privileges after. For the first 24 hours we will only be able to see for 30 minutes at a time every 2 hours. This sort of upsets me, but they don't want anything to overstimulate her or upset her. Afterwards the lab drew blood and she had an EKG and chest x-ray done. We were given a special soap to wash her in the night before and a blue bracelet that has to be on when we come in. If it's not, they will have to do the blood work all over again and get new blood for her transfusion. (Yikes!)

After 5 hours in the hospital we went home to pick up the kids and return to the hospital for their tour. They were able to go back to the PICU and see the kind of room she'll be in. They'll only be allowed to go in to see her after the surgery for 5 minutes and 1 at a time. The Child Life therapist will have activities and crafts for them to do so they can help decorate her room. This is another way they can feel needed and that they're helping.

A Walk to Remember

We had a great time Saturday at the American Heart Association's Heart Walk. It was a little colder (and windier) than we'd hoped, but nonetheless we enjoyed ourselves. Our whole family attended as well as Annie, Kelly Pruett (Maddy's teacher), Jennifer and her 3 kids (including Claira's new cousin Jessica), Tom's co-worker Roland and his friend. We had a team picture in our pink "Bless Her Heart" shirts. The walk itself was 3.2 miles and the kids stuck it out! There were cheerleaders at each hydration station with Gatorade and water bottles. There were activities for the kids including face painting and rock wall climbing. Kaylee and T.J. both gave up an annual band contest to attend. This was very important to all of the kids. I think they felt like they were doing something to benefit Claira.
I'm proud to announce that Team Claira's Journey collected $580 in donations for AHA. Thank you to all of you who donated online and purchased t-shirts. We've sold 70 shirts so far. Thank you also to Vickie, Tom's company secretary, who made a precious flier with Claira's picture and a description of her situation. She placed it by the sign-in sheet and by the end of the day collected nearly $300!

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Thank you David and Gina Brim for helping to express our gratitude for an amazing show of compassion and generosity.