I'm guessing she will always call the shots.
I don't know if you'll remember this, but there was a time when Emily drank from a bottle.
It wasn't ever enough to give her the nourishment that she needed, but it was something.
And we were hoping to build on that something.
The thing we heard over and over again was that when Emily's heart was fixed she would have the strength to eat.
We didn't plan on the lack of blood flow to her gut causing recurring infections.
Recurring seems an understatement.
The treatment for the infection is gut rest, meaning nothing went into Emily's stomach for weeks.
And in those weeks Emily forgot how to eat...she fell out of practice...and she forgot that a bottle was the means to fulfilling her hunger...because she was never hungry.
When Emily was finally allowed formula again she failed her swallow study.
More of what she ate went into her lungs than went into her stomach...and she wasn't coughing, which was dangerous for our little lady.
The last thing we wanted was for Emily to get pneumonia.
Jason and I were frustrated, and we felt that without practice she would always fail her swallow study.
Months later when Emily finally did pass a swallow study, and we were given the green light to feed her orally, Emily had lost all interest in eating.
It's possible she lost the ability as well.
About the same time as the green light on a bottle, the nurse practitioner told me that they had stopped one of Emily's reflux medicines. She had been on two for most of her life and the NP felt that it was redundant to give her both medications.
I was happy with the thought of going home with one less medication to give.
We had been home from Emily's latest surgery/hospital stay for about a week, and had seen glimmers of success with the bottle when Emily started throwing up.
Every. Single. Day.
Sometimes it was more than once, but it was always once.
We talked with the pediatrician, I texted one of Emily's nurses, who has become a friend, and I talked with other moms.
We did everything we could think of.
We ran her feeds over a longer period of time, we changed when we gave Emily's meds to her, we made sure the milk was always warm, we tried skipping a feed in the morning, we changed the formula we were using...we tried everything.
Still, she threw up.
And the more she threw up the more she refused a bottle.
The two are very much associated.
We finally met with a GI doctor who told us she wanted to do surgery to prevent Emily from throwing up, but only after she ran a test.
That test was the reason for Emily's and Daddy's sleepover at the hospital a few weeks ago.
The GI doctor put a probe down Emily's nose into her esophagus, and the probe was in place for 24 hours, to test the level and severity of Emily's reflux.
The GI doctor called me a few days later and told me that the test showed that there was no sign of reflux and that she wasn't going to do the surgery.
"In fact, there is no reason Emily should even be on her reflux medicine," the doctor told me.
I was incredibly skeptical.
I've seen the results of other tests that showed damage to Em's esophagus because of reflux.
I asked the GI doctor if she was sure and she told me that she was.
I stopped the reflux medicine.
(The GI doctor also told me that she wanted to wait to do the feeding tube surgery...at least a few more months.)
Within 3 days of stopping Em's meds, our little lady was miserable.
With every feed she acted more and more uncomfortable.
Her throwing up increased and in addition, it began to hurt her.
She would cry and cry after every throw up episode.
On the fifth or sixth day I cursed the GI doctor and started the reflux meds again.
And for added measure, I started Emily back on the reflux medicine the nurse practitioner took her off of.
In the last seven days Emily has only thrown up once.
I don't know if I should be more frustrated with the NP or myself for not thinking of adding the other medicine sooner.
Or maybe I'll just be grateful that things are finally looking up.
And hope that the longer our little lady goes without the trauma of throwing up, the less averse she will be to fluid in her mouth.
Em's feeding therapist promised that Emily would eat birthday cake on her first birthday.
We've got 6 months little lady...6 months.