So, here's what the two specialists said: #1 is a pediatric gastrointerologist and we saw him on Tuesday. He looked at Harper, talked to me and my mom and said he didn't think there was anything physically wrong with her in terms of ablitity to eat. He thinks that she's been traumatized by being force fed and now she just needs to learn to like to eat.
His suggestions:
-up her calorie intake in her bottles (from 22 to 30), so she's getting more calories for eating less
-offer her food every 3 waking hours, but don't force her to take it
-limit feeds to what she is willing to do in 20 min
-if she pitches a fit, walk away and try again in a few minutes
-let her sleep through the night if she can
-stop measuring how much she ate
-no weighing her
-only worry about having 3 wet diapers a day
-follow up visit for weight and BMI check in 4 weeks
-New swallow study
The visit to the feeding clinic was a totally different beast. Let me start by saying we had to drive to Downtown Dallas and the kids and I got lost, then when we arrived, the receptionist sent us to the wrong place and I had to be escorted to the right place...so I was a little frazzled when the appointment started. Harper was doing okay until the woman who was evaluating her wanted to hold her- then it went downhill from there. Harper was hungry and grumpy and didn't want that woman to hold her. She cried- a lot. I tried to feed Harper, but she refused to eat, so the evaluator left and went to get an OT who came in and tried to show me infant massage to calm Harper down. Harper was still hungry, angry, and now scared when this woman tried to lay her on a table and start the massage. Needless to say, the massage didn't go well. The OT told me we needed to get Harper some therapy to work on her self soothing problem and her sensitivity to touch. She said "Normal kids like to get massages; it calms them down." I think that was where she lost me...
So, the OT gave Harper back to me, I calmed her down and she took her bottle- she finished all of it. The speech therapist watched her eat and then made the following reccomendations:
-too much rice thickener in her bottle- needs to learn to have a stronger suck, so thickener is not needed (remember she has a thickener to keep from aspirating; it also helps with her reflux)
-VitalStem (electroshock therapy) three times a week reccomended to strengthen swallow
-think about an NG tube (the tube she had in her nose while she was in the NICU) so you can monitor exactly how many ounces and mililiters she is consuming
-Occupational therapy for soothing issue and touch sensitivity
-Medicine for reflux that seems to be giving her problems (totally agree with this)
-New swallow study (the only thing both specialist agreed on)
I told the therapist that driving downtown three times a week seemed daunting and asked if we could go to a satalite office. She said she would call and check and when she called back, these were the options we were given:
-Plano office (close and managable, no problem)
-In patient services downtown (Harper could go and live at the hospital for 3 weeks while she did her shock therapy)
The thought of inpatient services made me numb. Is she really bad enough of that she needs to be ripped from our arms, put on a feeding tube, and have electrodes hooked to her throat? It has all been too much to bear.
It didn't help that when I called the pediatrician for some guidance (and spoke to her nurse, of course, because what real doctor actually talks to their clients on the phone...no, I'm not bitter), the doctor said, via the nurse, "just do what the feeding clinic said, the GI is great, but hasn't been seeing Harper that long."
NO WAY- you didn't even think about the possibility of shock treatment, an NG tube, and a hospital stay? You couldn't have really processed this because I know that you talked to the nurse for two minutes or less- ARRRGGG!
So, here we stand at the crossroads. I am not convinced one way or another. I loved hearing what the GI had to say, that things will get better, to give her a litte time. But, then I hear the speech therapist impressing upon me the importance of nutrients to the brain right now and overall growth and health and I wonder if she should be in a hospital with a tube down her nose counting every calorie she takes in. Tony even said last night "maybe she came home from the NICU too soon"... do we have the time to wait?
My only reservation with the shock therapy (besides the fact that it's shock therapy and she is my baby), is that the reccomendation came without seeing an updated swallow study and knowing exactly what's going on with her swallow. I sort of feel like the speech therapist made up her mind when Harper started crying; I mean, she finished a bottle with that lady in the room for Pete sake! If she can't swallow very well, then how did she do that?
I guess the enormity of the situation is just weighing on me, and Tony, and Jack, and Harper, and even Abby. Our house has been a crucible and it's exhausting to know that Tony and I have to make the choice, but Harper has to live with it. Prayers are welcomed.
In other quick news: the kids went to wok on curriculum writing with me on Thursday. Here's a picture of their afternoon work. They did a great job, even Harper ate while we were there! It was great day, so I'll end on a happy note.
No comments:
Post a Comment