Friday, May 14, 2010

Back to Square One

Okay, not really. it just feels that way being back in a hospital room that looks just like the one I was in on bed rest - with the same bed, same remote control, same dinner trays. I did not have deja vu yesterday after we checked in to the hospital, I had a panic attack! Seeing all those familiar things brought back such horrible memories of my hospital days. And having that feeling again of being trapped and under someone else's control was just too much. It's hard when you are the patient and a nurse or doctor tells you want you can and can't do; but it's even harder when you're the parent of a patient.

Maggie got her feeding tube yesterday. Watching the nurse put the tube in was the hardest thing I've seen a nurse do to her. She was gagging and choking and then for the next few hours screamed uncontrollably and kept arching her back as to try and get away from that irrititating feeling of something going down the back of her throat. There is nothing more heartbreaking than when your children look up at you in desperation as if to say, "help me." But thankfully by last night she had calmed down and was acting like herself again.

Also yesterday the Speech/Feeding Therapist came up with a plan for Maggie. The plan is to feed her eight times a day, every three hours (again, back to square one!) and whatever she doesn't take in her bottle we will put through the tube. The idea is that she will get back to feeling what it's like to be full again and will want to repeat that feeling by sucking longer and staying more focused on the bottle. But if she can't finish it, we will not stress her out by pressuring her to take more and will instead give her the rest through the tube. The therapist will feed her three times a day and us the rest. Hopefully all those things will relieve some of everyone's recent stress and less stress has to have some effect on Maggie hopefully!

The therapist also watched me feed her yesterday. Maggie did great for about the first ounce and then, as usual, she began getting distracted and sloppy and then just stopped completely. She told me that I was already doing everything they would have taught me in the first week (thanks to a therapist friend who came to the house and worked with us!) so that was good and bad to hear. Bad because it means that we are already doing all the proper techniques at home and that oviously hadn't made much of a difference. Afterward the therapist flatly told me that her issue was a sensory one and when feeding problems are a result of sensory issues then they can be much harder to overcome. Sometimes it takes years. Therefore, a G-tube is a real possibility as an NG tube (the one she has in her nose now) can't stay in more than a month or two. Of course I was very discouraged hearing this and cried a lot the rest of the day, second guessing myself if we made the right decision. I mean, what is the point in being here if there is not much hope in solving this problem immediately?

Today , however, I feel better about our decision after seeing that being on a strict schedule with not much distraction really has benefited her. She has had two full bottles and nearly finished another one. In between feeding and napping, Maggie willalso have physical and occupational therapy and some play time. Mary Lawrence was up here this morning and you can tell it just makes Maggie so happy to see her. And it makes me happy to see her happy!

Maggie has "beaten the odds" before and so I am going to try not to be discouraged about the prognosis. Even though most babies with these sensory-feeding issues struggle with them for years, that doesn't mean Maggie has to. I am still going to pray that she is able to eat completely on her own by the time we leave here, with no tubes whatsoever. And also am praying that she is assigned skilled nurses and therapists who come to love Maggie and take wondeful care of her. I feel like a prayer hog asking for so many prayers but I would appreciate continued prayers for Maggie:)

Gotta go now - less than 24 hours and Maggie has already ripped her tube out. I don't think I can watch them put it back in...

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