Just Breathe...

We've had a rough week over here at Sweet B's palace. She got her first fever (that I know of) and I did not freak out or anything. I'll give myself an A for that one!

Sadly, after three days of drinking eleven ounces by mouth, she decided to stop orally eating. She did this a few weeks ago and I thought that was the end of her oral eating for a while, but she has done this before, so I choose to hope that she will resume again. Her reason for refusing food is clear...that darn reflux. Straight from the pit of hell, I tell you. She has vomited almost every feed, and her throat is clearly irritated from that. That was the reason for our hospital stay a few weeks ago-vomiting blood from an irritated throat. I would not want to eat either! Also, when I attempt solid foods she purses her lips shut and turns her head away, which she is very good at. Stinker! Every day my husband and I question whether or not her surgeon made the right decision in refusing to do the fundolipication (a procedure which would stop the reflux) along with placing her g-tube. His reasoning was that they don't normally do this surgery on neurologically normal children (although I have seen it in tons of micro-preemies) and that she would only be a good candidate if she got aspiration pneumonia or lost weight. Clearly he doesn't care about her oral aversion due to the reflux or the developmental delays that it is causing...But it is a big surgery with complications, so we will trust him for now.

Over the last five months Sweet B has gone down so much in her food intake...and at times stops eating. As a mother, this is very, very hard to stomach. The feeling of pure frustration that this creates in me is a big deal...My husband and I are constantly trying to get food in her somehow, either by tube or by bottle, while at the same time praying that she does not throw it all up when she refluxes. Her eating runs our life. We can't feed her formula in public because she won't drink from the bottle in public. We can't just send down four ounces in her tube because she will throw it up. I would say that we easily spend six hours a day trying to feed her/re-feed her after she vomits.

While it is affecting her developmentally and with her oral aversion, it does not seem to affect her personality. Sweet B is such a happy girl. She will throw up and her eyes will become red and her face will get pale, but then one minute later she is grinning at us. It's almost as if she inherently knows how much of a miracle she is...how much she is loved by so many...and how much she has overcome.

On a happier note, Sweet B had an excellent second visit with her physical therapist. It gave me such hope. This physical therapist is truly a wonderful human being, and smart as a whip as well. I told her that last week's homework of having Sweet B play on her side did not go well. The therapist played with her and experimented, and found that she is afraid of doing it and cries, which is unfortunate, because she must be comfortable on her side in order to roll over. When she put her on her side, Sweet B held her breath, and then finally let it out but in really fast spurts. The therapist realized that she is afraid because lying on her side requires her to breathe differently. It squishes her diaphragm and she is so used to refluxing constantly, that she feels very vulnerable in the side-lying position. It makes complete sense. A total breakthrough! Her tone is very good, and everyone has said that she should be able to sit up by herself completely and roll over, but no one had the answer.

The therapist had Sweet B sit on her lap on a swinging inter tube. The vestibular motion of the inter tube caused Sweet B to relax, while the therapist whispered sweet things to her. Slowly the therapist moved her to her side, stopping when her breathing became strained. Soon she had her completely lying on her side. She taught me how to feel her tummy to gauge how her breathing is going, and how to pull her in close to me to reassure her that I have her and that she is safe. Then she showed me how to slowly position her to where she is bearing weight on one arm, and that will allow her to grow comfortable in that position. She thinks she will be rolling soon. Please God, let it be!

Then the therapist told me that I need to breathe, too. She said that Sweet B and I need to lean on each other to get through this time. I wanted her to stroke my head and tell me that it is all going to be okay!

Because it is, right? It is going to be okay.

We have been leaning on each other for almost a year now.