Monday, March 19, 2012

No increase

So this weekend was much better than the previous week. Kyle talked to the feeding clinic and agreed to attempt to get on board with their rules. We decided not to increase McKennas tube feeds so I am veryyyy nervous about the weigh in tomorrow. She looks very thin, so I expect a loss. Hoping it's not too big so the tube increase,if needed, will be minimal. She hasn't had a bowel movement in four days either which impacts her eating and then impacts her weight. Guess its really just a waiting game until tomorrow.

Monday, March 12, 2012


Is there ever a time when defeat is welcomed? Once again I lose. Mckenna's tube feeds will be increased again tonight. I am broken, defeated, hurt, upset, angry, frustrated...the list goes on. Why does God think our family is strong enough for this!? Grrr

Tonight increasing from 340 ml to 400 ml. Will see if that's enough of an increase to help McKenna gain. The feeding clinic said they are here to support us but until Kyle gets on board they are not comfortable moving forward. Meaning once again a clinic is done with us and we are left to figure this out on our own. I am so angry at him I don't know what to say or how to be a team with this situation.

McKenna is doing better each month. She still needs tube feeds obviously it is off the tube some and that's an improvement still from September when she was full tube. As we increase the tube she will most likely decrease the oral intake which than eventually means full tube, and then comes the gagging and puking and dry heaving. I am so angry I just want to scream and yell and cry. I haven't given up on her and I feel like increasing the tube feeds is a sign of giving up. I never want my children to think that!

My prayer, since praying is all I can do at this point, is that McKennas body will tolerate the increase and it will not impact her oral intake but will increase her weight enough to get her to a point we can try the wean again, the megace again, and eventually get her off the tube. I'm completely drained and now have to go get the twins up from their nap and act happy and like life is easy.

Saturday, March 10, 2012

Feeling Down

You know those days when you wake up and you feel off? It's the weather, the atmosphere, the thought of the tasks ahead of all compiles and you feel drained and exhausted? It's one of those days. I'm pretty sure if I were to go back through this blog I would find myself writing about these type of days at least once a month and that alone frustrates me. I hate the thought of not being the happy positive woman that I want to be, or I expect myself to be.

So McKenna lost more weight. Not a huge amount, but enough to effect Kyle. She actually is back down to 25 lbs which is 1 1/2 lbs lighter than when we started the wean in September. In six months McKenna has not gained weight. While she is bigger than she was at the lowest point of the wean she is still smaller than the start of it all. It is not healthy for a baby to not gain weight in a years time span, and that's whee we are at. She was this weight when she was two years old.

I have full faith and confidence McKenna can and will get off the feelings tube. I understand and accept it is going to continue to be a long process. But what I don't accept is the road of struggles to walk that long path. I hate that it causes tension in the home, fights between Kyle and me and the on gong stress of wondering if she will eat next meal.

Kyle wants to increase McKenna's night tube feeds. I do not. It isn't because the mentality that she went from seventy percent off tube to now seventy on tube. I worry more about the side effects that come with it...retching, puking, dry heaving, exhaustion, etc. Kyle emailed the clinic for direction and that he is concerned about her weight so Weill hear back hopefully Monday. I know hey will say don't increase her tube feed, but my fear is Kylie's yelling and anger about their response. So today I am down, frustrated, feeling helpless and exhausted. I feel defeated, as usual, and hopeless. I want god to come down and fix this situation. I wrote a year ago about gods power and how He only has to speak it and McKenna will be healed and how frustrating it is that He won't do tha. I have to say that after a year I am still in that same place mentally...speak Lord and let the healing begin.