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.