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.