Day 89

Poor Anya was crabby today, because she had her immunizations yesterday. She needed to be caught up so she had five shots! Three in one leg and two in the other! She did not seem comfortable when I was holding her but was happy when in her crib. I gave her a bath today, the first one I have given since she was extubated.

Taking a bottle is progressing like weaning off the vent: sloooowwwllllly. I have reclassified Anya’s bottle issues from oral aversion to a hyperactive gag reflex along with disorganized swallowing. I do not know if this is the proper terminology but it helps me work with what she needs. Babies with oral aversion do not want anything in their mouths, and Anya likes mouthing things.

The first step when trying a feeding session is to let her feel the bottle on her lips and get her to open her mouth. Then let it in her mouth just the right amount, if it goes in too far it makes her gag. Not just a little gag; an eye-rolling-into –the-back-of-her-head gag. I can’t pull the bottle out of her mouth lest she figure out that the bottle is causing her to gag, causing her to refuse the bottle. When she gets full of gas she retches, not a little retch, but a retch that would make a frat boy proud. She cannot throw up or burp though, so then we have to vent her: there is a tube with a syringe at the end that we hook up to her g-button that lets the gas out. She is still figuring out how to swallow, the formula overwhelms her and she is not sure how to handle it.

So needless to say watching Anya try to take a bottle is painful. There is nothing natural about it and the whole process is excruciating. The g-tube is a blessing at this point. If she is hungry before a session I just give her half her feeding into her button. She settles down and we can work on the bottle, then whatever she doesn’t take I put in her button. She is taking her bink better so I hope that once she gets used to the bottle nipple she will suck on it more, and then will get more experience with swallowing.

When you think about it, we are asking a lot of Anya. She was just extubated two weeks ago. For nearly three months she was very ill, on sedatives, and was not able to have much experience with swallowing. Now all of a sudden we want her to eat. I still have confidence that she will take a bottle, we just need to keep all her experiences positive. To anyone who thinks it is a shame she had to get a g-button: the previous paragraphs should explain why it is a lifesaver.

We like to hop! We like to hop on top of Pop! STOP! You must not hop on Pop!

 

For now I am out of insurance purgatory. I am sure that insurance issues are going to be an ongoing issue until she does not need as many therapies and equipment. The stress of a job has been replaced by the stress of coordinating everything. I feel crazy at times but the fact is that so much has gone well up to this point that I can count on God to help us through the rest of it.

Estimated six days remaining….