TO DO OR NOT TO?

So..I've been literally a mess! Moving home I thought it'd be constantly like a little kid in a candy store, everything is perfect when you first walk in and see the pretty colors of the candy, than you eat all the candy and your tummy hurts because you've realized you've had too much? Know the feeling? I do. Anyway- since moving home, I don't even want to hang out with anybody I'm back to my hermit crab self, cleaning, appointments and tending to my kids, and I ABSOLUTELY love it, it's just my thing I guess. The only bad part about this all is I've got too many decisions that are consuming me and eating me from the inside out, if I could just sit and cry all day I would. But I can't I've got to put a smile on and pretend everything is fine and dandy for my children.

I never thought being a parent I'd have to make all these decisions that are so important, yes being a parent is extremely hard, but so so so rewarding and that's what has been getting me by. If you don't know we just got back from NC a few weeks ago. Emmry did outstanding developmentally. However, she is now measuring in the 10% and last visit she was in the the 50th. She's now loosing weight and is not getting taller at all. Dr. Davenport (NC DOC) recommended waiting on GH until she is a year old still, and her 3 month old visit to NC, she recommended seeing how she'd chart and we might not even need Growth hormones because our heights. It seems as things have changed dramatically for this family. In the last month Emmry now has glasses, is having tubes put in within the next month. She is now recommended to see an optomertrist because her swelling out of 56 of the TS girls is the most oddly shaped and swollen.

The Dr's nurse at Children's in Omaha called us while we were in NC with the results of Emmry's bone age scan and said her bones are advancing too rapidly and there's not a change in her height. She stated that and she told us it'd take a few months to get set up on Gh so the companies would be in touch with us. Thats all fine and dandy because Mike and I have time to research the risks and benefits, however that's not the case now. Somehow in two weeks, growth hormones have been sent to my house and it's immediate that Emmry starts NOW. Why? I'm not exactly sure, they say because her bones can burst out of her body, because they are advancing while her body is halted. Okay I get it, but I don't.

I feel like they're rushing- first it was 1 yr, than July, now it's NOW! The growth hormones, needles, swabs everything is at my door except a doctor explaining exactly every reason to me as to why its necessary to start now. Side effects of GH are pretty serious and being as they don't recommend them in babies I just don't get why they feel the need to push it. If she's having a side effect how am I to know? The symptoms vary so greatly.

The nurse will be here to train me tomorrow and I am expected to give my daughter a shot everyday until she's 16-21 years of age. No big deal, right? What would you do if first you give birth to a daughter see her for five minutes..she's life flighted and than your told your daughter has down syndrome, then they're not sure, and than you find out it's her heart, it's not down syndrome instead it's TS, she doesn't eat but instead it's necessary that she has surgery at one week old, she than is force fed- your 2yr old wonders where the baby that once was in mommy's tummy went and he's not allowed to see her, you too are hospitalized, paralyzed and wondering who is caring for your children and if your daughter is going to pull through. She's not hearing right, she's not thriving and she's being cared for by volunteer nurses. My daughter sees more doctors a month than I've seen my entire life. This has all been a night mare and a blessing in disguise and I'm scared to death to make the wrong decision for my baby.

I cry every time I think about sticking that needle into her- the ingredients, the side effects. the pre existing issues, the unknown. Worst of all I'm her protector, her care giver and I'm expected to give her this because they say it's going to be effective. She's so young though and typically they do not recommend this until older.

Yeah, I can say no. But I'm scared of the consequences either way honestly.  Mike and I both believe that she was given to us for a reason, she was born with Turner Syndrome for a reason- sure she has special needs, but I don't think that giving her growth hormones just to make her a little taller and risk the chances of her body having an adverse reaction because of her many other issues, such has her kidneys. heart and sensitivity to medicine is worth that. In my eyes she's not broken so why do I need to try and fix her? She's perfect in my eyes.

I just wonder what she's thinking and wonder if I'm doing the right things for her. Her medical binder is stacking up slowly and is as big as her, I wish I could somehow switch places with her for a day just so I'd know how she feels, what I can do to improve and go from there.

Her being born has taught me so much. I value life now more than I ever have, I go to bed with a heavy heart each night thinking of the day and wondering if she was hurting today somehow. I wake up every morning with a smile seeing her smiling back at me and knowing that she's my miracle. I guess what I'm saying is being a parent is hard, you think twice- once for yourself and once for your child, but having my Emmy girl I think over and over daily and over analyze every thing that a normal parent wouldn't even second guess. I'm scared for my baby, and I'm hoping for the best outcome, I'm hoping some sign comes my way to tell me what is the RIGHT and SAFE thing to do is. Of course everyone is going say do what the doctor says, but I'm the one who has to make that choice and I'm the one who has to live with the choice I make for her. Sometimes I wish that I could just treat her normal and pretend that everything with her health is normal so than she can grow up doing as she pleases. But if I treated her like every thing was normal, she wouldn't get the proper medical care that is needed to ENSURE her health is maintained so she can live the most normal to her ability life growing up.

I know tomorrow whatever choice I make that I'll be making it in the best possible interest of her in all views of the spectrum. I just wish these choices were easier for all of us. I know nothing comes easy, what doesn't kill you makes you stronger, and that's what is keeping me going. I'm so sorry baby girl.