Still nothing

The results came back from the blood work and everything was normal. Friday she survived the Berium swallow test and no reflux was found. That was an amazing experience! She was bound to a sort of board with velcro strips. Her head was held between two large foam blocks and then her wrists were tied above her head. She was not a happy baby. We were asked to not feed her for 3 hours before the test, so fortunately she was hungry enough that even that chalky stuff calmed her down. I was able to stay with her and watch the food go down her esophagus and and into her stomach (which looks like a sideways snowman when from certain angles!). It wasn't until he tilted her body towards her head that we saw a little reflux, however the radiologist said that was normal. A speech pathologist checked her sucking and swallowing and felt it was normal as well. She was young and newly married and very baby hungry! She stayed and played with her for quite awhile.
We've considered the size of the holes in the nipple and have tried that route. So far it's the same. She's had a small cold these last few days and I wonder if that's why she's eating a little less. If colds can make that much difference for her then my fears of keeping her from other people have been confirmed. We've also started waking her up in the middle of the night to try to get her to eat more and she barely got down 2 ounces. She just wants to sleep! When she's awake she's still bright and alert ... it's just such a mystery as to why she has no interest in eating!
Our bishop asked today for everyone to fast for her (as well as other people in our church that are struggling) next Sunday. I know she's been included in countless prayers ... and we're grateful.

We love our new pediatrician! Dr. Hughes was wonderful. He sat with us for quite some time and discussed all of our concerns and examined Claira. She had blood work done today ... she never cried or fussed ... what a trooper! With this they'll be checking her thyroid and repeating the PKU test that is done in the hospital. Tomorrow she'll go in for a barrium swallow test at the hospital. The speech pathologist will monitor her sucking motion and swallowing and also watch what happens to the liquid as it goes down (reflux). The doctor said today that babies with reflux are not necessarily fussy babies. He is pretty amazed with the complexity of this little girl!

She's lost another 1.5 ounces since yesterday. I was so relieved that Dr. Hughes was understanding about all of this. I truly had fears they would question my ability to care for her. As if I were not feeding her enough. It did take my breath away when he categorized her as "malnourished"! I never want to hear that word again!

The plot thickens ...

Today we visited with Dr. Lundt (the cardiologist). After two weeks of constantly feeding Claira formula fortified breast milk, she lost weight! She grew 2.5 inches and lost 3.5 ounces! Dr. Lundt does not think that her weight is heart related for this reason ... usually when a baby is in severe heart failure it will cause her to sweat profusely and breathe heavily when she's trying to eat. Therefore causing her not to eat well. In Claira's case she's eating well, but just not enough and she simply doesn't seem very interested in it. She watched her eat today to confirm. Claira's heart failure is currently being maintained with the medication. If the heart failure were causing this she would have to do surgery immediately by clamping the heart as a temporary fix only to have to do surgery to fix the holes when she got bigger. She says this is beyond her expertise.
Tomorrow we go to see a new pediatrician, Dr. Hughes, who will hopefully order tests to find out why she's losing weight. We've officially hit "failure to thrive" which is something I've been dreading. It could be reflux, it could be that she's not metabolizing her food, it could be something much more serious.
Dr. Lundt says she is very concerned about the size of Claira's holes in her heart and that they would never close on their own. She simply cannot think about surgery until she gets bigger and we resolve the weight issues.

The Big Scare

Last week doctors discovered 2 holes in Claira's heart. One is in the upper chamber, ASD, and does not present any real danger to her heart. The other is in the lower chamber, VSD (ventricular septal defect), and is a cause for concern to the doctors. Click here to read more about VSD. In fact it has caused her to go into congestive heart failure. She's taking two medications to help with this. One is a lasik that is going to help reduce the fluid around her heart and lungs and the other (Digoxin) is to help her heart work better in spite of the holes.

If the hole is small enough it usually doesn't require surgery as it will close on its own within 2 to 3 years. Claira's holes are slightly larger and may never close on their own. That in itself is not necessarily a problem, because they may shrink to a small enough size that she will be able to live a normal, healthy life. What is a problem is her weight.

Claira started life at 9 pounds ... my biggest baby... and 2 1/2 months later is only a pound heavier. (This pic is at 1 month ... I miss those cheeks!) At a minimum she should weigh almost 12 pounds right now. We can't seem to get her to eat more than 2.5 ounces at each feeding. I'm pumping about 4 to 5 times a day so that we can fortify the milk with formula. Typically formula or breast milk has 20 calories. The mixture she's getting is 24 calories. If her weight does not come up she will require surgery. She'll sleep up to 10 hours at night if I let her. I believe that' mostly due to how tired she is from her little body working so hard to perform at a "normal" level.

I've been very frustrated with our family doctor and have felt that my different concerns were falling on deaf ears. Sunday I had to call the on-call cardiologist because she had just thrown up everything she ate as well as the medicine. I was worried I would need to give her more. He was wonderful to talk to and was shocked that her doctor wasn't doing anything to find out more on her lack of weight gain! We now have an appointment with a pediatrician in Tulsa that the cardiologist hand-picked. I'm thrilled and anxious to get started on tests that will help get us closer to a healthier baby! She's been throwing everything up after her first bottle every day this week.

The good thing about this little sweetheart is that she's so happy and alert. She loves to be talked to ... as you can see in the pic. Her color is still good. At this point our biggest struggle is waiting. Waiting to see if she gains weight and waiting to see if the holes start to close on their own.