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!