Thursday, October 16, 2008

A letter I wrote to a friend who has a "heart baby" who said I could vent...

Hey.... all my appointments have been anything but cardio....but still all that stressed me out is cardio involved. Yale's feeding issues stem from his decreased function. While we were in hospital he had a hard time meeting TFI requirements. although they never kept him at a level of fortification for more that 12 hours. So I fought the NG tube while there because I know he can take in enough fluid at regular strength. however after being home, although he was taking in enough, he wasn't gaining...not losing either...but not gaining enough. So we concentrated half way up to 22... and well he wasn't making his fluid requirments and I started to get worried and stressed because I felt like all day long, all I was doing was offering him a bottle and tracking everything he took in. I made the decision to place his NG tube. and felt guilty about it because he was MAD at me... wow. and I was guilty and stupidly felt like it was a step backwards and that I somehow had failed him. I mean it was only in July when he was still NG fed...I don't know how I got so used to living without it. Anyhoo... so now its in, and I'll be topping up his feeds and he can have a stronger fortification. I resigned to the fact that if god forbid this new med doesn't help and his funtion doesn't get better and we have to go to transplant, I want him chubby. he is just skin and bones right now and barely gaining a thing...his growth curve hit a bump. So now I am now trying to be pro active... instead of reactive. On the good side of things he has stopped protesting tummytime.... he shows interest in getting stronger and I can tell he wants to move,,.. but can't. So the extra calories can help to facilitate that. Enough of my being selfish and wanting him to work so hard so that he seems that much more "normal". I think the part that is bothering me the most is that his two friends that are2 and 3 weeks younger... are already standing and scooting around furniture. I mean I "Know" that he is a heart kiddo and that mean nothing is going to come easy for him. but i kind of feel like i could have done more, or is there something I did?.... terrible how its all just hitting me now. i think i was deluding myself into thinking that post glenn he'd be more normal and stronger and healthier... and that he'd be all normalness until it was time for the fontan.... Wow am I ever clueless... and its hitting me smack dab in the face that he will NEVER be normal, and he will never be heart healthy, and I think now I am really mourning that healthy baby I never go to have. I just wish, just once it could be a little easier... and then i think that I am super selfish because there are loads of kids out there that are having a harder time than us... at least we're home, and relatively stable. I think in this lull of semi stability I lost my coping mechanism, and now i'm really seeing it... and feeling it.... and dealing with it. *shrug*is this all normal to go through? and why am I looking to anyone else to show me what normal is? Anyhoo.... thats what I am dealing with lately...and it sucks.Hugs to you! Tanna...
So thats what I've been dealing with lately. Yale has his Ng tube again...and how wierd is it that I'm upset because now I have to take it out if I want to get "nice" holiday pictures of him... I just wish I knew when I'd become okay with all of this.... how come I never got a choice. and why is seeming so much more difficult now than it was back then?

2 comments:

Anonymous said...

If I may place my "sister hat" to the side and wear my "Professional" hat for this comment...
Tanna, your grief of a "normal" baby is SOOO NORMAL!!!! and expected actually. In my years working in the field of child education, and getting to know many parents who have children with varing degrees of needs, being developmental, medical or a combination of both, they all have that in common. Mommy guilt, as you so appropriately call it.
Feeling graditude because you know that it could be worse is healthy, but understand that your emotions are also healthy.
You are doing an unbelievable job!!!! Yale might not express that now, but he will.
I can't wait so see you, 9 days to go :)
Auntie Erica

Yale's Grandma said...

Tanna you made a hard choice when you decided to have your baby and give him a chance at life. You knew it was going to be hard but I don't think anyone really knows how hard it can get. Your son is alive and you know many who can't say the same. He is truly a blessing in this family and we thank you for chosing life for him. It is normal to want a "normal" child and feel guilt even tho there was nothing to feel guilty for. God gave you this child to test your strength and so far you are doing an excellent job in my eyes. You make me proud EVERY DAY! Every person thinks "what if...." and then feels guilty for it but it is only natural. NEVER doubt that you made the right choice and always try to find the silver lining in your dark cloud. I think given what you know now you would make exactly the same decision again. Yale with his half heart is totally worth all the trouble. Chin up my dear and take one day at a time. You can vent to me anytime you want too and if you feel that the world is closing in on you just give me a call and I can come down and look after Yale so you can have some you time! OK? Hugs and kisses to you and Yale.

Love Mommy