Merry Christmas!

It's hard to believe that a year ago we just learned of Claira's little heart and had no idea of what was ahead. As I prepare my family for Christmas I am filled with gratitude. Long ago we were given a most precious gift ... the birth of the Saviour. This year we were given another ... Claira's health. There is nothing that can be purchased or placed under the tree that will compare to the feelings in our hearts this Christmas.
Merry Christmas from our family to yours.

Made You Smile!

A Prayer

Ive been cleaning and organizing the entire house these past few weeks. It seems that every few months or so I have to do this ... since this year has been so crazy, it needs it more than ever! While I was sorting through a basket I found this little silver cross.
Close to this time last year, our family was attending Chelsea's 4th grade Christmas play at the PAC. After somewhat surviving the program with a 2 month old and a very wiggly 20 month old we headed home. An older gentleman approached me, while I was waiting for Tom to pull the car to the front. He grabbed my hand and said "You look like you need a prayer", then he placed this small cross in my hand. I guess he and his family had been sitting behind us during the play. I felt touched by his gesture and thanked him. It was the following day that Claira's heart defects were discovered and we ventured into the long next few months.
I've since put it on my bathroom mirror so I can always remember this sweet man's prayer for our family.

Maddy's Memories

Today I had the rare opportunity to spend some "alone time" while she and I drove home from church. She started telling me about 1st grade and how her teacher, Ms. Pruitt, had a football bean bag chair in her room. She said that it was special for kids that were feeling sad. Whenever Claira was in the hospital, she would sit there alot, usually with her 2 best friends and they would read a book together. Then she went on to talk about several other memories she had. I can't recall what those memories were because my mind was set on the visual of a broken-hearted little girl being comforted by her friends and teacher. Tom and I were affected deeply by Claira's experiences, but let us not forget how greatly our other children struggled as well.
Our whole family continues to heal ... including Claira!

A Celebration for an "Extra-Ordinary" Girl

Let's just say ... we know how to party! With a little help from Mimi and Aunt Piki and my good friend Dawn, Claira's party was beautiful. Our friends Barry and Tracy Reynolds went out of their way to make our friends and family feel welcome. Claira's sisters and cousins were thrilled with the pony rides. Maybe it was a little over the top for a 1st birthday party ... but Claira's 1st year was a little over the top as well! She's growing and happy. She's become "Her Royal Roundness" to all of us.
Many families have suffered far greater hardships (and continue to do so). We remain grateful for her health and the wonderful medical care, support and prayers she received. Many of you know that I'm studying to be a registered nurse ... with hopes that I can give back to other families in the future.

Happy Birthday Claira!

1 year old today! It's truly an amazing milestone ... we've all felt such a mix of emotions today. She's a different baby, a different person. It's hard not to reflect on where we were and what we were doing a year ago.
Last night we all discussed how Tom, T.J. and Kaylee took me to the hospital at midnight to prepare for a possible induction the next morning. The doctor broke my water at 7:30 am and Claira came at 8:30 am. One hour ... she knows how to make an entrance! There was considerable meconium in the womb so she was watched closely for 24 hours due to concerns with her lungs, but other than that she was a healthy 9 lb baby! I remember recognizing her the moment I saw her, she looked like her big sister Kaylee. (Of course, now she mostly resembles her brother T.J.)
I remember the two months before her diagnosis feeling so completely overwhelmed with 6 children and a little depressed (okay ... alot depressed). Now I am overwhelmed with the feelings of gratitude that she's shown me and a deeper appreciation of life.

Claira's place in our hearts wasn't planned but she was definetly part of a greater plan.

We will be celebrating Claira's milestone with our extended family and friends later this month. (Pictures coming soon!)

Humble Reminder

This evening our family went to a pool party for T.J.'s jazz band. A good friend of mine, Robin Chase, lived up a few houses from the party and so I walked over to say hello as I hadn't seen her for a few months ... especially since Claira's surgery. She introduced Claira and me to her husband and family. As she introduced Claira she pointed out that she was the baby who been in the hospital several times. I gave an update and a brief description of how she's progressed (I always welcome a chance to brag about her).
Her mother-in-law approached me and, in passing, mentioned "when we were praying for Claira". I had chills. I have never met these people and yet they knew us. They knew Claira ... and prayed for her. I was reminded of how the heavens were opened in behalf of our family by more people than I think we'll ever know.
Thank you ... again ... to all who prayed for our little Claira. Those prayers were answered.

Movin' right along

We recently purchased a rubbery-top sippy cup for Claira. I cut part of the spout out so that she wouldn't have to suck to drink. Amazingly ... she's drinking water! That's all she'll drink (for some reason she doesn't take anything else from a cup) but who cares?!? She's drinking! Combine that with the fact that she's eating everything a healthy 10 month old should be eating ... we're almost there ... free of the tube feedings that is!
At her last cardiology appointment she got a huge welcome as everyone was thrilled to see how much weight she'd gained. Dr. Kimberling wants to do another echo in 6 months. If the scar tissue on her aorta is still the same we'll go to yearly visits. When she turns five they'll do another cathyter procedure to open the aorta more. If that doesn't work she will have to go through another surgery. But ... that's a long way away and who knows what could happen in 4 years! She's already an ongoing miracle.

Look at those CHEEKS!!

Isn't she beautiful? At her 9-month check up she weighed in at a record 17 + pounds! Sorry the update took so long ... we're having a funeral for our computer.
She loves food. Can I say that again? She loves food! She eats just about everything that a baby her age should eat.
She still depends on her tube feedings to maintain her weight (but who cares ... she's cute!). She likes drinking water, a little. She prefers playing in it after the first swallow. That first swallow in itself was a miracle. Her speech therapist thinks she may have a slight aversion to smells so we're to take film canisters and put holes in the top. Inside we'll put all kinds of smells ... coffee, cinnamon, scented lotion, vanilla, etc. That should help her adjust to more kinds of smells and then hopefully tastes ... such as juices, etc.
The important thing is we're getting there!

Could I ask for more?

Claira is doing beautifully! She's gaining weight ... quite a bit I might add. Her thighs are so chunky! I laugh when people comment on how little she is ... I have to think to myself "If only you saw her before." We've moved on to table foods. She truly doesn't like the consistency of baby foods. She loves the Gerber "Cheetos". They melt in her mouth and she begs for more! Her speech therapist comforted me today by telling me that I have to remove all normal thinking for now and remember that we're focusing on getting her to eat. The good nutrition habits will have to come later.
She drank from a cup for the first time today ... granted it was white grape juice with quite a bit of cereal added ... but nonetheless it was a cup. And she loved it! She looks great and acts like she feels great. We've had more problems with granulation tissue around her button and the surgeon recently said that some kids just are prone to it. She's had her third dose of silver nitrate. Hopefully this will get rid of it. If this doesn't work, they may have to remove the button and put the gastric tube back in for a time so that it can get more air. That is soooo not fun ... but who are we to complain at this point?!?

Can I kiss her now?

That's what my nephew Dylan asked the other day when he saw Claira for the first time since her surgery. The last time he was around her was right after her first trip to the hospital. He had leaned into her car seat to kiss her and I ... well ... I sort of freaked. I was so obsessed with keeping her away from other people, especially children. Obviously he remembered that and very sweetly asked for permission before he got close. Gladly I was able to say "Yes ... you can kiss her now".
Friday she had another echo-cardiogram at Dr. Kimberling's office. The scar tissue on her aorta is looking better and is no longer a concern. We no longer have to give her Digoxin and Lasix (heart medications). He said that in 5 to 10 years from now we may have to fix her aorta, but until then she's doing great! What a relief!
She weighed 14 lbs and 5 ozs. She's gained so much weight that Tom and I feel she looks like a different baby. What an amazing year 2007 has been for us.
From here we will continue to work with speech therapy as we try to get her to eat. She is still taking baby food but very minimally ... maybe a tablespoon at a time. I've gone from buying stage 1 baby food and adding lots of cereal to thicken to trying stage 3 baby foods that have more flavor and variety. Maybe that will make a difference. We have a long while before we're able to think about removing the button. Oh well, one thing we've learned is that this girl can accomplish anything!

Back to the Dr's ... again

We had to visit the surgeon's office again today because of granulation tissue that has developed around the tube site. It's just extra skin cells that grow when they shouldn't. If ignored, it can cause problems with the tube and leaking, etc. We've been putting a topical steroid on but it doesn't seem to be helping, so today Debbie put silver nitrate on to try to burn it off. Strangely, Claira didn't complain. She does however keep a sharp eye on Debbie (and any other person that comes near her wearing a white coat).

She's only gained 2.5 ounces this week. A little disappointing, but since we can't really increase her calories any further we'll just have to take it as it comes.

Olive Oil ... the Magic Ingredient

She gained 11 ounces in 7 days!!!!! Adding olive oil to her diet seems to have made all the difference. She has fluff! There's almost a roll or two on her thighs! She broke the 13 lb barrier and now weighs an amazing 13 lbs and 5 ozs. We are all excited and she seems to be much happier and stronger. Thank you again for your prayers.

Hmmmmmmm

Okay ... I give up! She lost weight again this week! Excuse me, but I thought we resolved this little problem!
Back in February when Claira was in the hospital with pneumonia Dr. Ranne's staff increased her calories to 30 per ounce. After a couple of days of losing weight Dr. Barton suggested that it might be a sort of paradox where a person's digestive system can actually burn calories while trying to digest something so rich. So we moved her back down to 27 calories per ounce. I mentioned this to Dr. Ranne's nurse practitioner yesterday and she said that wasn't necessarily true. She had us start giving her 2 ML of olive oil 3 times a day. Olive oil is 8 calories per ML so that would add an additional 48 calories per day without adding protein for her to work to digest.
Another issue Claira is still facing is a damaged aorta. Whenever the surgeon started Claira on the heart/lung bypass machine they attached canulas to her aorta and pulmonary artery (pink and purple). When these are removed they stitch the holes where the canulas were and generally have no problems. Claira's aorta (artery that delivers blood to the body) developed scar tissue which has sort of narrowed the passage. The cardiologist said it wasn't severe enough to fix now, but if it doesn't get better he will have to go in using a cathatyr and "balloon" it back open. This doesn't happen very often and even when it does it rarely needs repaired.
Today I called his office to see if this new issue was contributing to her weight loss. He said no, but that we should come in earlier than planned to see how she's doing just in case.

We have lift off!

At least it feels that way! We got the "all clear" from her pediatrician and surgeon to start feeding anything and everything we can get down her (within reason of course). And as you can see we've wasted no time! Green beans and rice cereal were on the menu today with a swallow of milk ... and I do mean a swallow. Interestingly she didn't like the green beans until I added the rice. Obviously it's a texture thing with this girl. We'll continue the feeding schedule through the tube and everything else is just bonus. She weighed in at a whopping 12 lbs and 12 ozs yesterday.

And if this news isn't exciting enough ... she rolled over from her tummy to her back yesterday! Yes ... I cried.

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.

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.

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!

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.

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.

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.

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!

Back in the right direction

Claira's back up to 12 lbs and 3 ozs ... recovering from the loss last week. Dr. Hughes is always sweet to be optimistic, but I hate it when she loses. This weight check was out last visit until her surgery. It almost felt like the end of a chapter. He said he's sad that her heart condition is what brought her to him, but he's glad that it did because he's enjoyed getting to know us.
Tonight Tom and I went to the Oklahoma Blood Institute and donated blood through their directed donor program. Our blood will go directly for Claira's surgery. That's a comfort to both of us.

To Mend a Broken Heart

Today in the mail we received a packet from the pediatric surgeon's office. Enclosed was a book titled "To Mend a Broken Heart". This book was written to prepare parents for the surgery ... before and after. It told about the different tubes they will use and where they will be placed. The bypass machine and the possibility of needing a temporary pacemaker afterwards. The amount of time the surgery will take (around 2 hours), part of which is prep-work. And suggestions on how to comfort Claira and help her to not feel scared. I'm always glad to get straight-forward information, but truthfully it makes me anxious.
Tonight I was looking through my calendar, making sure I had everything down and as I looked at April approaching I felt butterflies (butterbies as Evie puts it) in my stomach. Kaylee has really been expressing her feelings alot lately and making sure we all know how unfair this is. She feels jealous and left out ... and why shouldn't she! Most of our attention is going to Claira. Maybe not directly, but our conversations on the phone and to each other are basically about Claira. Madalyn has mentioned several times that she doesn't want me to go to the hospital with Claira. Our whole family is feeling the weight of this. T.J and Chelsea are a little more laid back and yet I can tell when something goes unsaid. All I could do was explain that we're focusing on Claira to make her better so that we can go back to focusing on the whole family again. I hope that's not an unrealistic goal.

She's getting good

Claira pulled her feeding tube out twice today. Both times she would give me a look like she was so proud of herself. I keep telling her that as soon as she starts eating, she can keep it out! For some reason it doesn't make any difference what I tell her! She's getting really good at working the tape off and hooking her finger in and pulling it out. The scary part is that it doesn't always come all the way out. The doctor checked her for signs of aspiration and there were none. We also weighed her today and she's lost 2.5 ounces since last week's weigh-in. It's these little things that constantly remind me why we're going down this road ... why surgery is so important. Otherwise I think that I could honestly talk myself out of it. She had a 2nd RSV vaccination today. I've always hated it when my babies get shots, but this time I was all for it. After seeing how hard RSV was on her, I know a shot is much easier for her to go through.

Heart Walk

On Saturday March 31st, our family will be participating in the American Heart Association's Heart Walk in Tulsa at LaFortune Park. We received an e-mail from a friend asking us to support her efforts in raising money for AHA ... and decided to start our own team in Claira's name (thanks Michelle). If you'd like more information please click on the following website. http://heartwalk.kintera.org/faf/r.asp?t=4&i=186169&u=186169-169271277 Our family is having t-shirts made so that we can all match. Those of you planning to join us at the walk can order a t-shirt as well ... they're going to be pink with brown lettering reading "Bless Claira's Heart".
Fortunately, Claira's heart defects are common enough that the surgery that she requires is fairly routine and very few complications are expected. This is because of the many years of research done by the AHA. Some children are born with defects so complex that they are still searching for ways to mend their hearts successfully. (Click on the following link to read more. http://www.americanheart.org/presenter.jhtml?identifier=3041739)

Mark your calenders

A date has been set ... Monday, April 9th (the day after Easter) Claira will undergo open heart surgery.
This afternoon Billie, Dr. Kimberling's assistant called after the conference that was held. Three cardiologists and the pediatric cardiovascular surgeon met and discussed Claira at length. The main concern was her feeding issues and all agreed that her heart needed to be repaired first and then consider a gastric tube if needed. I asked her several times if everyone agreed on this plan of action, I needed to know for sure. I called Dr. Ranne's office and scheduled a surgical consult and the surgery. The secretary asked me when I wanted to do the surgery and I paused ... I told her that was a terrible thing to ask me! It would have been easier if they told me when it would be rather than having to select a date. In the end she chose the next available time.
The surgeon's staff referred me to a great resource for the rest of the kids. Child Life in St. Francis hospital. They are an organization throughout the country that helps children cope with being in the hospital or having a sibling in the hospital. The representative today said that she will meet with Dr. Ranne to find out exactly what Claira will have done. On the 3rd of April our family will go to the hospital for a "tour". Child Life will talk to the kids and answer any questions they might have. They will take them to the rooms she'll be in throughout her visit in the hospital. If there's a room available in the PICU they'll be able to go in there as well. Tom and I have really been struggling with whether or not we'll let the kids see her afterwards. Child Life said that research has shown that it's better to be straight forward with kids and let them see exactly what's going on. They have found that children do better in the end. Kids have such imaginations that they can sometimes make things worse in their head than they really are. They've taken polaroids of the sibling first and shown it to the kids before they let them in the room too. The book "My Brother Needs An Operation" was also suggested. And to add to all the support, our city librarian called today and did some research for us and hunted down a video by Slim Goodbody from a library in Colorado that is also highly recommended.

What we've been waiting to hear ...

Tom and I brought Claira to the surgical admitting area around 11:00 am Tuesday ... and she caught everyone's attention! They checked her weight, measured her, listened to her heart and lungs, etc. They were out of gowns so we put her little pink t-shirt on that says "made you smile". The tech brought her a new little friend to keep her company during the procedure. Her Pappaw and Grandma came in and waited with us until the cath nurse came to bring us upstairs where we had to say good-bye at the door of the cath lab. She was so tired and I learned later that she fell immediately to sleep, so they didn't have to give her the oral meds to make her sleepy. We went downstairs to the cafeteria to eat and met Mimi there. As soon as we were done I was ready to go back up! It was expected to take 2 hours, but we were anxious and wanted to be as close to the lab as possible.

After an hour and a half Dr. Kimberling came out with a picture of her heart which showed the catheter inside. I wish I could explain more, but I'm still very confused as to what this picture shows ... only that it's Claira's heart and that a significant blood flow is sneaking through the holes. (I promise to learn more later ... this was all very overwhelming.) He said that a heart with minor to no effects from a hole has a 1 to 1 flow ratio between the heart and the hole. If a 2 to 1 flow ratio is present, surgery is required. Claira has a 3 to 1 ratio. If the ratio had been closer to 2 to 1 he would have considered waiting, but he feels that doing the surgery now is necessary. He also said that this would definitely be a cause of her poor feeding and that he probably wouldn't have felt that way at first either. The cardiology team will meet with the surgery team Friday at lunch and then we'll be contacted with the date and more info.

She was being watched very closely in recovery and then was to be taken directly to the Intensive Care Unit. Mimi and I stood at the waiting room door watching for her to come up the elevator. I was so anxious ... I felt like a little girl waiting for Santa Claus. After several minutes after they said she'd be ready a nurse came to get us ... she was already in the room ... she'd snuck in through another elevator! When Tom and I got into the room there were 4 nurses standing over her and the anesthesiologist was still there. Claira did great throughout the procedure, however they did keep us overnight in PICU because she became feverish twice. Her eyes were very puffy from the fluids they gave her through the IV. Her face also became bright pink, which worried me. One of the nurses and I felt it was a sort of reaction ... to what we don't know. I will definitely bring this up when I meet with an anesthesiologist again. They also had trouble finding a pulse in her foot for almost 8 hours after. The artery they use for the test is almost completely occluded and so they have to be sure the blood will again travel to her foot. She had little markings on her feet so that the nurses would know where to look for a pulse with a Doppler. It was really cool because the pulse in her foot made the same sound her little heart made while in the womb.

Other than having to keep her leg perfectly still for almost 10 hours, she recovered beautifully! She came home this morning and is just like nothing ever happened. We do have to watch the sight for bleeding but that's it!

Big day tomorrow

Tomorrow Claira will go into the hospital for a heart catheter. (See link below for more info). The Dr. Kimberling's staff gave Claira a little friend to take with her tomorrow. They explained that she will be given a medicine to make her sleepy and then a gas to put her under complete sedation. Then they will intibate her before they do the procedure. This is going to give the cardiologist the most accurate info of what her heart is doing ... how much blood is taking a shortcut through her holes. After they're done she'll go to PICU (Pediatric Intensive Care Unit) to recover and most likely stay the night. Dr. Kimberling said today that he will be looking for the smallest complication to make him decide to keep her. It's usually an outpatient procedure but he's worried about her respiratory status. We'll have the results very soon after the test is performed.
Friday the surgeon and cardiologist will meet to discuss the details of her surgery and set a date. He hopes to be able to have a date sooner as he and the surgeon will be doing a heart surgery on Wednesday and he will be able to discuss it then. I feel as anxious as I did when I was pregnant! Those last few days before the kids were born felt like an eternity ... Friday is more than an eternity away!
Please continue to pray for her and all will go well ... I have faith in that.

Hidden Blessings

Madalyn made a new friend in school named McKenna. Her mother and I visited on the phone for quite some time and discovered that we have some things in common. She is an RN and works in the NICU (Newborn Intensive Care Unit) at St. Francis and is very familiar with the things Claira is going through ... she also recently went through feeding struggles with her last child, Hunter. Hunter was born with malrotation and required immediate surgery when he was diagnosed. After many months of struggling with her son she was able to get him to eat again because of her experiences as a nurse. She has been very successful at getting "hard to feed" babies to eat.
Not only was she helpful in answering questions about Claira's NG tube, etc. she's agreed to help me work with Claira after her surgery. I'm so grateful for this new connection! There's still a chance that we'll be unsuccessful. She may still require the G-tube in order to feed her milk, but she will be able to eat solids and eventually will eat normally.

The drama continues

Yesterday Claira threw up twice and both times it had blood in it. The pediatrician felt it was irritation from the feeding tube. He said it really needs to come out but we also really need it in! He said we have a big week ahead of us and that we should just "hang in there". She pulled the tube out again last night, but not all the way. So we were paranoid that she had aspirated some of the milk as well. The nurse told me what to watch for and we got a pulse/ox monitor from the Knifechiefs. I think initially I was naive in thinking that we had dates ahead of us and it would be smooth sailing from here. Oh well ... we both know this is not going to last forever. This girl is such a fighter! Maybe we should start praying for her teen years!
PTO is providing meals every Tuesday and Thursday for the rest of the month and we recently found out that someone has been randomly depositing money into our utility account. So, we probably won't get an electric/water/sewer bill for the next few months! Various donations have been left at the school for our family. Sorority came and cleaned/sterilized my house last week and left a pot of soup, fresh fruit and fresh flowers on the table. And church is always just a phone call away. I'm blown away ... I never imagined so many people would reach out to our family. I'm so grateful we've made such good friends and to live in a community of such generous people.

Still gaining

Claira gained another 8 ounces this week! I'd almost wonder if we were giving her to much, but I don't think that's possible at this point with this baby. I drilled her pediatrician today about her loss of interest in taking a bottle. I told him I felt like I was cheating and that it goes against everything I know as a mother. He said that we sort of are cheating but we have to with Claira because she won't do enough on our own. He suggested that we get the information on the heart cathyter next week and then decide what to do. This morning I tried giving her a bottle and she started choking, almost as if it was a new sensation to her. The pediatrician said he'd almost rather I didn't try for now to ensure she doesn't aspirate and aggravate the situation.
Her lungs sounded crackly today and with a normal baby that would be a scary sign ... possibly even hospitalization but again, she's just trying to get over pneumonia. I don't think I've ever heard of someone taking this long ... almost 5 weeks!

Things are looking up

I think things are getting as close to normal as they can be for now. We're still doing breathing treatments every few hours and suctioning as often as possible to help her eliminate the junk that's in her lungs. It's hard to completely let down our guard with the upcoming surgery hanging over our heads. We have to get her healthy again and keep her that way so we won't have to postpone. I always thought that hearing the doctors admit that her heart was causing the feeding problems would make me feel better, but it really hasn't. I still worry and obsess over everything. The pediatrician says I shouldn't worry about the fact that she won't eat, but I do. My natural instincts as a mother say that I should be feeding her something ... constantly ... even though she's getting continuous feeds through the tube. It simply goes everything I know.
She keeps on smiling, though. With all that she's going through she continues to be curious and demand attention when she thinks she's getting left out of the fun! Babies are amazing creatures!

Close call

Yesterday Claira, Kaylee and I were feeling under the weather. I woke up with a serious stomach virus, Kaylee came home from school feeling the same and Claira woke up looking pale and a bit on the cranky side. I've come to learn that when Claira gets pale, it means she wants attention! At 1:00 pm she pulled out her NG tube. This was the first time she's ever pulled it out while the feeds were running, so I got concerned about the possibility of it getting into her lungs. I didn't hear back from the doctor's office until 6:00 pm and by then it had been 5 hours since she'd eaten and when the doctor's office called they asked that we take her immediately into the after-hours clinic at St. Francis Hospital. Since I was sick, Tom had the honors. So he came home to a disastrous house and had to turn around again to the hospital.
After a few hours he called to tell me that they were preparing to keep her over night for observation because of how badly her chest x-ray looked! Fortunately, the attending doctor on call was Dr. Barton (one of the docs who treated her during her hospital stay). He compared the x-ray to one they took just before she was discharged and decided that it wasn't worse or better than before. He said he didn't want to put us through that again. He sent them home and prescribed a double dose of lasiks. The nurse put the NG tube back in and by 11:00 pm she had food in her tummy again. The frustrating part is that after 10 hours of nothing in her tummy she never would take a bottle! It's been three weeks since we've been able to feed her more than 1/2 an ounce by mouth.
Today the pediatrician had us start the Xopenex treatments again to help her get the crud moving in her lungs. Thankfully (after complaining about how much I hate the bulb syringe) he had home health bring an aspirator and a B.B.G. (that's short for Baby Booger Grabber). It's a vacuum to suck out her little nose. That's probably why she was looking so pale yesterday, the poor little bug couldn't breathe! As far as the eating problems ... we're not going to push it right now ... we'll just deal with one thing at a time!

Oh ... one more thing

Chelsea had an asthma attack today. The school nurse said her lungs sounded bad and that we should rule out pneumonia, so we spent 7 hours in the Claremore ER. Fortunately there's no sign of pneumonia ... just a bad ear infection and asthma troubles. So she and Claira have breathing treatments every 6 hours using the nebulizer. Why not? We didn't have enough to do anyway!?!?!

Latest Hospital Adventure

Welcome home ... again

Claira and I returned home Monday night to a house full of beautiful, vibrant and noisy children! Wow ... what an adjustment from sitting in a hospital room everyday for 3 weeks. We are soooooo glad to be here though! I missed the kids terribly. Evie hugged me and wouldn't let go. She wouldn't let Maddy near me either. Before Aunt Shannon came, she and I were deciding on whether or not she should come as soon as possible or when Claira had the G-tube surgery and before we were able to discuss it again, we both felt now was the time ... and it definetly was! It's so nice to have her here to sort of buffer the culture shock of coming home with a sick baby. Claira is still receiving breathing treatments with a nebulizer the hospital sent home with us. Every 6 hours she gets Xopenex which is a "bronchial dilator" and every 12 hours she gets Pulmicort which is a steroid. The Xopenex treatment is only for 2 more days, however we will continue the steroid until the doc says stop.
We have also been giving her an iron supplement to prepare her for surgery next week and it was making her terribly sick. Fortunately, we were able to stop that today ... because she will not have surgery next week for the G-tube. Why the change of plans? Well ... while were in the hospital the pediatric surgeon decided he wanted to do a fundoplication which is generally used in treating severe reflux. As we've established before, Claira does not have reflux. The surgeon explained that he was choosing to do this so that "just in case" she throws up from the heart failure complications she can't. It's a permanent procedure where the top of the stomach is wrapped around the esophagus so that the child can't throw up. Tom and I both were for the G-tube, however the additional procedure made us a little nervous. Tuesday we met with the pediatrician and he too expressed concern. In fact, so much so that he wanted me to have the cardiologist call him immediately after our visit the next day.
Wednesday was our first visit with our new cardiologist Dr. Kimberling (whom we both love!) and we asked him his opinion on next week's surgery. He said the only reason he was for it was because he thought we wanted it so desperately. We told him that the only reason we wanted it was because we thought this was going to be a long term problem, especially since they weren't admitting it was her heart causing the eating problems and that they wanted to wait for her 1st birthday to take action. He said he wants to do a heart cath in 3 weeks (March 13th) and then immediately schedule the surgery to repair her holes. He said if we can tough it out a few more weeks with the NG tube, that hopefully fixing her heart will also fix the feeding problem and she will not need a tube at all! If not, then we can do the G-tube. At least this way we can keep her from having to go through an additional surgery.
This is what we've been waiting to hear. Our prayers have been answered by opening the doctors' minds and doing what's best for Claira. We both finally feel some closure. We do have a rough time ahead of us, but at least we know in our hearts that this is what she needs.

Things are looking up

Sorry I haven't updated here lately. Its been a little hairy and you know, well I haven't had a whole lot of time. Anyway. Aunt Shannon came today!!! Yeah hue!! I would really like to thank all of you who have helped out so much (Kelly, Mimi, Becky, PTO, Church, Friends, family...) I could go on and on and...Well thanks.

Claira is doing wonderfully. She has beat the RSV and now is fighting the pneumonia. She's been smiling and even giggled some. Such a beautiful smile. I sure did miss it. We're not sure when they are going to release her, but they want to do the G-tube on the 28th. The docs didn't think she was strong enough to have it done on the 14th so they postponed it till then. I think she finally realized that Evie was really missing her. Which of coarse she is. We all are.

Susan is such a wonderful mother. She is always asking the docs and nurses questions and is involved in everything their doing on her. She's such a big little trooper to. I wouldn't have her anywhere else but there. Where grateful for keeping Claira in your prayers and thoughts.
Keep up the good work Claira and come home soon.

What a little trooper

What a little trooper that little bird is. Yesterday she had been in the hospital for 10 days and was up and down (mostly down) due to pneumonia and the RSV. And on top of all that she came down with a secondary pneumonia. All that and still has congestive heart failure. She has been on 3 different antibiotics and hasn't responded to any of them. They started her on one that is a 12 hour dose and we thought she was going to respond to that one. She was a little more alert on it but nothing changed.

Today (day11) they moved her closer to the front desk so they can keep a better eye on her and as they moved her they removed her oxygen and she dropped from about 90 to around 50 in just a few minutes. They bumped her up to 3.5 parts per liter on her oxygen and said that if she had to go up to 4 parts they would have to move her to ICU. We don't want that. So you better start clearing up little girl.

Last night they started her on a steroid during her breathing treatment and tonight they started her on a steriod injection through her I.V and Susan said she started to perk up a little. Still no smiles darn it! Anyway, we're praying this starts something going in her little self. We told her we're getting tired of hospital food and that mommy is getting home sick, but you know how far that goes with little ones.

And just when you thought nothing more could happen to the little bug, Susan told me that her pneumonia has gotten worse and thay are watching her closer and that she may have to go to the ICU. Not a good sign. Anyway, we just keep the faith that she will sit up and say "Darn it, I just want to go home and have Evie pick on me and love on me like a little doll. I sure do miss her." Only she can't sit up yet, ...and , well, she can't talk yet either. Shoot!

Well keep us in your prayers and thoughts and we'll do the same with you. Thank you all for all the love and support you give to us.

She's back in the hospital, again

Well you know things are bad again when I'm having to write this(It's dad). Claira is back in the hospital with a full blown case of RSV and also has pneumonia. She has not been well for a few days so Susan took her to the doctor and they admitted her. She really slowed down on her eating and her fever was getting higher. Her smile just kinda left and she was just miserble. Since she has been in the hospital her condition has not improved much, but that is due to the RSV. She's taking an antibotic for her pneumonia, but she's still pretty miserable. It's sad to see her that way and her bright smiles are just gone.

On the bright side, we finally got the cardiologist that we were hoping to get. He came in and talked with Susan for quite some time and told her that they as a group decided to go ahead and repair the holes in her heart. One reason for the sudden change is that they realized it is her heart. Her having SRV and pneumonia tricked her heart into working better and after she is better and the fluid is out of her lungs then she will be in the same shape as befor. Something about the pressure in her lungs is making her heart work normal but as the fluid drains from her lungs then her heart will have to work harder again. Of course there are some risks involved in all this. She is still extremly under weight and they have to wait for the RSV to completely be out of her body. He said that it has to be out for 6 weeks befor they can do anything.

We are greatful for the doctors who are working on her and all the talking they are doing between each other. All the doctors who are making the rounds at the hospital are all great and it's nice to have a great Pediatrician. He's pulled alot of this together and want's to get to the bottom of all this.

Claira is such a wonder to all of them and also a joy to be around. All who meet her talk about her wonderful smile and her charm. She has brought such a wonderful spirit into our lives and is such a joy to be with. What a beautiful person. We are greatful for all who has helped us out with dinners and a place for our children to stay. Thanks for all the prays and hope all is well with yours.

Check-up

Claira lost another 1.5 ounces over the weekend. I can only imagine how much worse that would have been if we hadn't put the tube in. She has another cold and this time a fever as well. You can really tell she doesn't feel good. Her little eyes are red and she just isn't as active as she usually is. We are to start her feeds sooner in the day if we feel like she's not going to get as much on her own. That way we can ensure she'll get the full 20 ounces. Even though it set us back a bit, I'm really glad we took the tube out last week. It confirmed in our minds that she truly does need it right now. It also answered a few questions I've had. Such as ... is it possible that she doesn't really need the additional calories? If that were true, she would have gained weight on fewer ounces per day. I've also wondered if she eat would better if the tube were gone now that the RSV had improved.
We're keeping our appointment in OKC on the 22nd, unless they have a cancellation and are able to get us in sooner. Her pediatrician admitted that his biased opinion is that her feeding problems are due to her heart ... but that he has to believe what the cardiologist is saying. That's why we need to start praying for the doctors that will be seeing her in a few weeks. We need to pray for their minds to be opened and to be able to know what is truly going on. I know this has got to be hard on little Claira. Bless her heart.

Life in paradise

We put the feeding tube back in tonight. I actually think it's getting easier. Her coughing is back and I think it's due to another cold. As a result she only ate 6 ounces today on her own! Oh! Evie broke out into hives tonight too! I think Tom and I need a weekend at the beach ... any beach ... we don't care!

Sisters

I was recently reading a blog on my sis-in-law's site about friends and how important it is to have these special women in our lives. Last night a few brought some dinner items and tonight another friend did the same. They weren't asked to do so ... they just wanted to do something ... as have so many others. My heart is so full because one thing I have learned from this experience with Claira is that we truly have good friends. I have great friends. I just wanted to say Thank You.

The Experiment

One of the most difficult parts of this experience is the fact that I'm constantly doubting myself. People are constantly giving advise ... all of which is appreciated ... however it seems to keep me in a constant state of confusion. As a mother, it's difficult not to question myself on every decision we make. Sometimes the advise I get feeds into the doubts I already have about whether or not her failure to thrive can be fixed if I just "try harder". Especially when it comes to the NG tube. I absolutely hate it! So ... Sunday Tom and I decided to take out the tube and see if she ate better without it. I guess a part of us felt like her eating problem had resolved itself and if we pushed her hard enough we could get enough ounces in on our own. Sunday went great and we were able to get in 15 ounces over a 24 hour period, but we were still worried that it simply wasn't enough. Monday, after an all day break-down, I called her pediatrician to see if we were doing the right thing. He thought this would be a good opportunity to experiment with her eating and see how much she gains with eating on her own. She maintained 15 ounces daily until 2 days ago when she slowed down to 11 ounces within 24 hours. Yesterday we fed her almost on the hour every hour and sometimes every 30 minutes. Alot of times we would have to push her and push her to take 1/2 of an ounce. She weighed in today at 10 lbs and 7.5 ounces (that's a 1/2 ounce loss over an 8 day period). I dread putting the tube back in but at least now I know that it's not me ... she does truly need it!
On a more positive note, when Dr. Hughes and I talked Monday he said if she didn't gain enough this week he would call the cardiologist in OKC and get the appointment pushed up.

Okay, I'll say it again ...

I love our new pediatrician! Thursday morning before our follow-up appointment I put my boxing gloves on and was ready for a fight ... I was prepared to tell the doctor that he needed to back me up in this and help me get answers! I also wanted his support in getting a second opinion (not to mention the fact that I had to have a referral first). Once I got there the gloves came off, because he immediately told me what I wanted to hear, that he was not going to give up on her and that we would find a cause for her eating problems. He not only supported me on the second opinion but thought it was a good idea. He agreed with me that calling Claira a "bad eater" is not a medical diagnosis but rather an effect. He told me that he's already consulted with a developmental pediatrician named Dr. Colewell. I mentioned him before thinking he was an endocrinologist. He is a specialist among pediatricians who takes on difficult cases and researches with other doctors around the world to find a diagnosis. He has also taken care of our niece Mikayla who has cerebral palsy and my sister said he is a wonderful, loving doctor.
Friday we met with the cardiologist and she maintains the eating problems are not heart related. She said she's not going to do the heart cath because she doesn't feel a reason to do it. She even said that needing 27 calories per ounce was not because of her heart, it was just because she needed it to gain weight. Duh!?! She was a little more clear with me about her plans for her heart ... because Claira's holes are moderately sized she has a 50% chance of them closing enough to never need surgery ... that's definitely good news. They usually give babies 6 months to a year to let this happen.

Just pluggin' along ...

I have to say the RSV has improved. She still has an occasional coughing spell. The key to treating RSV is making sure the mucous is moving ... which I think it has. Suctioning is the main therapy and it's amazing how much these little guys can store! She had an excellent day eating yesterday. She has to take in 20 ounces in a 24 period, so with the 10 she gets on the nightly continuous feeds she should take in no less than 10 during the day. Yesterday she voluntarily ate 12! However, today was a little bit more difficult to get the food down. Everything I've read about VSD says the poor eating is normal. The three doctors Claira saw at the hospital were Pediatric Intensive Care specialists and all agreed that her eating problems were due to her heart defect. One explained that as she gets older she will struggle more and more because her body is going to work harder and require more blood flow as she gets older. The frustrating part of this story is that the cardiologist still isn't convinced that the problem is heart related. She said in our last office visit that if the pediatrician and I don't find anything else wrong she would do a heart catheterization. In some cases the doctors can close the holes, but in Claira's case this will only be an observational tool as the FDA has not approved the balloon technique to be used on babies her age. But since Claira had RSV, they would have to wait another 6 weeks before they can do anything to her heart.
Why does this matter so much to us? If it's heart related, then once the holes are fixed she has a greater chance of resuming normal life. If it's not heart related, then what is it? How long will she have a feeding tube? Will they have to surgically place a permanent tube directly into her stomach?
Tom and I have decided to get a second opinion and are going to see another Pediatric Cardiologist on February 22nd in Oklahoma City. This may just confirm what we've already been told ... if so, then we know that we're doing the right things. Thursday we will see her pediatrician, Dr. Hughes and Friday her cardiologist, Dr. Lundt.
In the meantime, I'm getting better and better at putting in the NG tube. Not because I like it, but because I know I have to. Yesterday I was trying to trim the tape around her tube. I was being soooo careful of staying away from her face that I cut the tube! I never wanted to be a nurse or a doctor and here I am ... with my own little patient! I do remember, however playing doctor a time or two. I promise you ... it never involved sticking things down my friends' noses!

You've got to be kidding ...

Tonight was our second night of adjusting to life with Claira and her new attachment. We could hardly get her to eat anything today so we felt we needed to go ahead and up her volume from 25 ml an hour to 30 ml an hour, which would be a difference of 2 oz over a 12 hour period. We were told we could play around with the volume until we found an amount that worked best for Claira ... and since she went 1 1/2 days without vomitting we felt safe in doing so. The home health agency provided us with an IV pole to hold the pump and bag as well as a backpack to hold both so we could move around the house. It's a cute concept (especially because it's pink!) but it's not practical at all. In the front of the backpack there's a place to hold the pump and the bag is to go inside the backpack ... yeah right! The bag falls down so that it doesn't feed the milk into the tube and there's no place for the tubing to go from the pump to the bag. I'm not sure they thought this through very well.
Anyway ... after we laid Claira down for the night. Before I go any further, let me clarify that process for you ... first we have to use a stethescope to check that the tube is still in her stomach (if it isn't we have to take it out and replace it because it could go into her lungs), next we administer her medicine through the tube (this actually is nice because that way she doesn't have to taste the nasty stuffy). Then we put the milk into the bag, prime the pump, connect the tube to her tube and let it go. So ... not long after we laid Claira down for the night she started to throw up. If I had to guess the amount, I would have to say at least 2 to 3 ozs, so it was ALOT! As we're cleaning her up we realized that the tube was sticking out of her mouth! I was so freaked I tried to figure out how a tube that goes into her nose and down to her stomach could be coming out of her mouth! (Can I just say again that this is only day 2!) Tom explained to me that she threw the tube up with her food ... that's why it was coming out of her mouth. Immediately I decided "forget the tube ... I'm not putting it back in ... we'll just wait until a nurse can come and do it!". While Tom cleaned up the bed and I bathed Claira ... Chelsea threw up all over herself and her bed! So Tom went to clean her up and I decided I'm probably on my own and so I gathered Claira and all the things I needed to do the unthinkable ... then Evie climbed onto the toilet and fell head first into the trash can! You have to realize how stressed we both were tonight ... the only emotion left was to laugh!
Needless to say we all survived and I successfully replaced the feeding tube. She's sleeping and back to her original dose of 25 ml an hour.

Welcome Home

Well Claira came home on Friday after a long extended break from her brother and sisters. She said she missed them and wanted to come home. She is doing well but we are waiting to hear a final diagnosis on her "eating habits".
This was a difficult week for our family, but I believe it could've been alot worse if it weren't for the enormous support from our friends and family. Thank you to everyone who brought meals, spent the night so Evie would have someone to crawl all over, let our kiddos have a fun place to go to get their minds off of things, donated money, sent care packages and gifts, helped get the kids ready for school and then of course took them to school ... on time I might add, came to visit us in the hospital so I didn't talk the nurses' ears off every time they entered the room, brought food for the kids and didn't bat an eye whenever we needed something!
Claira had a tough time at the hospital and decided she doesn't want to do that again. (Unfortunately, if she does require surgery in 3 months she'll have to go again.) When she was admitted she weighed 9 lbs 13 ozs and left weighing 10 lbs 4 ozs. We're starting to see plumper cheeks. It took raising her calories from 24 to 27 per ounce. She's also getting continuous feeds for 12 hours every night at a rate of almost an ounce per hour. Mom was trained on how to insert in case it comes out, which is something she's not looking forward to. Speaking of Mom she went a little picture crazy so Claira could share her experience with you.
"One of the first things they did when I got to the hospital was put in this crazy IV in my hand. Mom was pretty freaked out, but it didn't bother me ... I didn't even cry. Then the nurses put this wrap over it so I wouldn't pull on it or suck on it too. Obviously they've never tasted one."
"Everybody called this my E.T. foot. I'm sure I'll understand that one when I get older. They had to monitor how much oxygen I was getting because of the RSV, so they placed a sticky bandaid with a little sensor on my foot. It didn't really bother me, but if my oxygen got too low a loud beeping noise would wake up Mom and a nurse would come running into my room. Most kids can't go below 94% but since I have a heart defect my little body can go down as low as 86%."
"The next day a tech did a sweat test to check for Cystic Fibrosis. Mom and I both wondered how they were going to do this one. She put these bands on my legs that had a chemical inside of a gelatin pad that triggered my sweat glands. After 30 minutes she came back and used another band to absorb the sweat. It was pretty cool because I didn't hurt. The test came back negative ... as well as every other test they did while I was there. I just like to keep everyone guessing. That night after the dietician and the doctors decided I wasn't eating enough a nurse put in an NG tube. It's kinda yucky because when they put it in I cough alot. It gags me and I wanna get it out! Once they stick it down far enough it doesn't bother me as much. This way they can give me food all night long while I sleep. I'm pretty tired at night and after a day of eating, kicking and whatever else I just can't wake up to eat! This doesn't get me down though ... I'll keep on smilin'!"
"Because I had RSV a respiratory nurse had to come in every four hours to do respiratory therapy. I loved it at first because they would pound on my chest and back ... it actually put me to sleep. But then they would use a long tube and stick it inside my nose and down the back of my throat to suction out all the mucous built up from the virus. It hurt! I was brave for Mom though."
"The night before I went home they did yet another test! This time they wanted to check for reflux over a 24 hour period. They put probe down my nose again that had a little sensor on the tip that would be watching everything that went in and out of my belly. The funny looking thing on my lip was watching my breathing to make sure that I didn't have sleep apnea. Again, everything was normal. Mom's friend said I looked like the Pringles man."
"After almost 9 days in the hospital I finally got to go home! Mom's pretty stressed about having to take care of a baby with so many needs, but I know she'll be fine ... she and Dad make a good team."