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."

Well hey guys, this is dad here. Susan had to take a break from all this blogging to take care of Claira in the hospital. Claira was admitted Thursday due to poor eating and weight loss. She kind of got into supermodel mode (I wish I could get into that mode). But while she was there they had to test her to see if she has RSV http://www.kidshealth.org/parent/infections/bacterial_viral/rsv.html (thanks Min) which she did. She had none of the symptoms except for the cough. All the nurses were sure she was OK. They all just fell in love with her and can't believe how awake and alert and smiley she is. She smiles at anyone who comes into the room and even when a nurse ticks her off by messing with the tape or the I.V. or the feeding tube after she calms down she just grins away at them. What a little trooper. Anyway, they sent her the sick floor and set her up with an I.V. to get her some fluids and mom would try to feed her from a bottle. The doctors that saw her all say that all this weight loss and poor eating is related to her heart condition. The cardiologist is still not convinced of that. They ended up putting a feeding tube in her (about time!) and are giving her an oz. an hour for 12 hours at night. Hope this fattens ya up ya little bird! They said she may be there for a few more days, so I get to be Mr.Mom for a little bit.

Thanks for all the prays and comfort and help all has given to us and hope someday all will be returned in your direction. And thanks Roosa staff, we all love you too!

Claira did improve a tiny bit this week. She gained 1 oz since last Thursday. Because I've logged every feeding since then, the doctor was able to determine how many calories she's getting in a day. Not enough I might add! He said to continue everything we're doing and that we'll try another path and see another specialist, an endocrynologist. They did a urine test, which involved a cathytyr. It was terrible because she had thrown everything up just a few minutes before, there was literally nothing for them to draw from her bladder. After pushing on her awhile they were able to get a teaspoon. The lab pricked her heel again for a more extensive metabolic test. We won't get the results back on either of these for another week or two. In two days we go to the hospital again for a sweat test which will screen for Cystic Fibrosis.
New subject for prayers ... give Susan patience! This is killing me!