Wrap up of '11 and first stay of '12

I've been meaning to get up to speed but it's almost impossible to "plan" things with our situation. But back to where I was in the last post.

So we came home and Emileigh was doing pretty well. We continued to go to Children's for outpatient clinic appointments and started Help Me Grow at home. Help Me Grow (HMG) is Ohio’s birth to 3 system that provides state and federal funds to county Family and Children First Councils to be used in conjunction with state, local and other federal funds to implement and maintain a coordinated, community-based infrastructure that promotes trans-disciplinary, family-centered services for expectant parents, newborns, infants and toddlers and their families. The Ohio Department of Health, Bureau of Early Intervention Services (BEIS) is the lead agency administering HMG program in Ohio ( http://www.ohiohelpmegrow.org/aboutus/AboutHelpMeGrow.aspx ). She seemed to be doing well and we were beginning to get in the groove of what our "normal" was going to be.

She was pretty happy. She smiled a lot in her sleep. Her cousin, Sylvia, was born 18 days after her. Doing pretty good... but she occasionally had some exaggerated arching where her head nearly touches her butt (about an inch separates them). That didn't seem too bad until Thanksgiving. Thanksgiving it started to go downhill.


We attempted to take her out to my dad's family Thanksgiving. The Nagele Thanksgiving is the Sunday before and is a very large family gathering. He is one of ten. So there was a lot of noise and such at my grandparent's house. She cried quite a bit and wasn't eating well. Almost refused. I just figured that it was too hard for her to eat with all that noise. Then later that week we had a few more gatherings and she screamed and arched pretty bad. I called Children's and they started her on acid reducers. It just got worse from there.
I continued to call Children's and they switched her acid reducer and said she was uncomfortable because of the reflux. Also at this time I went back to work full-time (talk about stress). Christmas was very difficult. She screamed and arched so bad on Christmas Eve at my parent's house that finally my aunt asked if she could talk to the clinic we were dealing with at Children's (she works there, just in a different clinic). I agreed. Christmas Day Emileigh was just as bad. She would barely eat and when she would suck on the bottle she would let go and wince and scream then arch. I had no clue what to do.

I was convinced something was physically hurting her. I continued calling the nurses and then my mom, aunt and I decided we needed to video tape her. So I taped her several times and put them on you tube. We sent the link to the nurses at the clinic and BOOM... we had an appointment. Yet again I had no clue what was going to come.

We had an appointment January 5th and were admitted several hours later. At that time I was force feeding her with a bottle. She averaged about 14 ounces a day and was supposed to have at least 24 ounces. She was so much more happy and content when she wasn't eating or had an empty stomach. So once we were in our room they put an NG tube down her nose and into her stomach. She screamed and gagged all night to the point that she was hoarse and lost her voice. I let her sleep on my chest once she gave in. The next morning was a Friday so that is really the last day of the week that they could do any tests. She had a swallow study that was mostly normal (no big issues), lots of blood work, they scheduled an MRI and started tube feeding her.

We waited through the weekend. Jacob had to go back to work on Monday and I stayed. Then on Monday started a lot of tests and such that I am really not going to get into because we never got anything but normal results and honestly I don't remember everything exactly. Until you stay in a hospital like that you won't understand. You don't sleep in there. You have constant traffic and noise plus you have the baby. It always seemed like as soon as she passed out they needed to get some blood or feed her or give her meds. But after all of that I was very happy to be there. If anything were to happen someone would be able to help me and I really, really thought we were going to get some answers.

As for her feeding: the first day they wanted to gravity feed her. It's where you have a large syringe and hook it into her tube and gravity feeds it to her (rather quickly). She began vomiting. Not spitting up. Vomiting. It was forceful. That had never happened before. They also were trying to feed her 4 ounces every 3 hours. It was too much. Finally I told them enough and said to do 3 ounces over and hour every 3 hours (got that?). It was a little better that way. From there we worked to figure out what was causing her to not want to eat.
Like I said before, all the tests came back normal. MRI was unchanged from when we were in the NICU. So a week after we were admitted we left with no reason other than her brain disorder was causing her to not be able to coordinate her sucking, swallowing and breathing when she ate. The only thing we were still waiting on was the genetic test called GPR 56 gene sequencing test. GPRPMG. Our neurologist wouldn't say if he thought our case was genetic but he gave me the feeling that he thought it was genetic (possibly due to how much of her brain was affected). So we went home January 13th with the NG tube and a pump.

That first night after everyone left we went to hook her up and it didn't go so smooth. I had a mild meltdown and eventually we got it working. Since then I have been sleeping on the couch. There is a permanent crater in the couch where I sit and sleep. Emileigh sleeps in a cradle thing that is up off the ground and it has a raised back so she doesn't lay flat. We actually had it before she was tube fed. I really like it. So she is next to me and the IV pole with the pump out in the living room. We kept the routine of feeding her every 3 hours for the first few weeks. I wasn't sleeping at all. And before I could ask the dietitian to figure something else out we were admitted again. Eleven days after we got home.