Just the beginning...

Friday, November 4, 2016

    Well today marks day one of a new chapter in our lives. Harlow finally got to come home today out of baby prison and out of the hospital... Can I get a AMEN?? The Nicu chapter in our lives was definitely one I could live with out. This morning before we got discharged the Dr. came in now keep in mind this was the Dr. that told us the day after I gave birth that she was going to stop developing mentally at 3 months and die at 10 years old, He also told us that she would never eat on her own and have to be on medication the rest of her life to control her seizures also that she is blind and deaf.  So pretty much besides the fact that we knew we were in for a battle he shoved us in the deep end with cement blocks connected to our feet. So he came in and talked with us about how the discharge goes and at the end of it he goes " She isn't as bad off as we thought she was" awe thanks for that... Ie yiyi it is safe to say being out of that place has made all the difference in the world. I wasn't able to love my baby the way I wanted to it was only in 30 minute intervals with her hooked up to tubes and wires. Don't get me wrong I do appreciate all that they did for her like I've said before we had some really amazing nurses. Ladies if I can give any one advise who is going thru what we have or is a new nurse the reason we like the older nurses is because they've been thru it they have seen it and they know what rules are meant to bend and what is important to patients and parents so take my advise and learn from a nurse who has some years under their belt they are wise.

   So now were home and its very calm (knock on wood) she doesn't cry.. and when I say doesn't I mean does not cry I've never heard her cry. When she was born she wasn't breathing so they had to work on her right away and take her off to the Nicu by the time we saw her she was all drugged up so I dunno if she just never learned how to or is just one of those babys so no crying. Pretty much its eat, sleep, poop and pee repeat which we knew was going to happen but I thought it would be a bit more hectic. Although since she's at risk for seizures her " baby twitches" SCARE THE CRAP OUT OF ME!  I know if she's gunna have a seizure its not like I'm going to get this nice warning and like I'm able to prevent it but its still uneasy to see I know Ill get used to it its just getting there thats the hard part! 
   We got a appointment Monday in LA with a neurologist .. Weird could have sworn I requested that from day one... Anyways I'm so nervous I'm still having a really really hard time with the medical portion of all of this its very hard to hear much of anything from them for me I start to panic before they even start so for now thats where bobby comes in and he is able to take what they say with a grain of salt. I hear all these amazing stories about babys who show their own miracles and pave their own paths and show Drs they were wrong. I pray that Harlow will get a chance to do that as well there is a lot of bad in the world but there is so much beauty I just don't want her to miss out on it. Besides that appointment she has 6 others coming up for 3 different Therapys, Hearing, Vision, and good ol pediatric where I get to then argue about vaccines lol When I saw those two pink lines when I peed on that stick I had no idea what my life was going to be like safe to say its been turned upside down since day one. I have my ups and my downs dealing with postpartum and dealing with all the horrible things that Harlow may have but today was a up day and ill take it...


                                       

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