i got a private room and that's about all.
in other news, looks like the doctors are moving Emmy towards a discharge date. the date hasn't been set, but plans are already in process. although we are excited at the prospect of getting her home, it is also very scary and a bit overwhelming. next week we will continue observation of her condition. unless there is significant improvement in the sucking/swallowing realm, they will move forward with surgically placing a g-tube, which will be her feeding mechanism until she does learn to eat with her mouth. again, another scary undertaking for us, but we are trying to make the best of it. we will also likely need a full-time nurse to assist with her care. again, scary. we're not sure where all the funding for her extra needs will come from. we are just trusting it will all work out. i see a fundraiser of some sort in our future. in the meantime, please keep us in your thoughts and prayers. and to all who continue to do so and leave us encouraging and hopeful comments, thank you.
5 comments:
what is it that they always say?
something about the "best laid plans"...
scary days ahead for sure.
but, special moments too.
xo
I am thinking about you and praying everyday! Please let me know if you need anything! I feel a million miles away but I can scoot down in a few hours and anything can be sent next day air! Lots of love to you, Adam & sweet baby Em!
I heard about you precious baby girl from a friend of mine who is a relative of yours. I just wanted to let you know that I empathize with your situation and am praying for Emerson and your family.
My son was born very premature and due to the placenta detaching during delivery was without oxygen before delivery for 3 minutes and then was resuscitated for 25 minutes before he was stable. He also had hemorrhaging and with that a lot of scary complications. After being in the hopsital for 68 days, he was allowed to come home only if we agreed to a G-tube. Once home he flourished. We also had in-home nursing care, but love and attention makes all the difference. I worked with him on taking a bottle and he did a little bit. I was told he would probably always need his G-tube and not ever take much orally. Let me tell you doctors can be wrong. Even at 10 days of age, we had a neurologist suggest that we take Wyatt off life support because he would never have quality of life. Miracles do happen and prayer does work. Wyatt will be 4 in 2 wks and he is the picture of good health with absolutely no deficits. He eats better than my 6yo and is already starting to read.
I am only somewhat aware of the programs in CA (as that is where I had Wyatt), but use them if you are able. Social workers are overworked and sometimes it may feel as if they are not listening or blaming you, but please remember you are your child's best advocate. Take care of your self as well and don't be ashamed to take help when offered or even ask for help. That is something that I didn't do and it made the emotional toll so much harder.
Forgive me if I have overstepped my bounds as I am a stranger to you. Please know that I will continue praying for your family and will encourage others as well.
I'm also a stranger to you but I've had many a stranger post on my blog as well in the past year. My beautiful boy will be one next week. It's been quite a challenging year for us. I've found posting to my blog, http://mommapod.blogspot.com to be quite cathartic through the whole thing.
We were weary of getting a Gtube for my son but were in the same predicament, we wanted to go home after 8 1/2 weeks in the NICU. I'm so glad we got it. He eats everything by mouth and has since not too long after we were home. We never gave up and he nursed and drinks from a bottle. But he is on a ton of meds and thank goodness for that tube! Otherwise he'd never want to eat after having to take all that via mouth.
I'm writing this from the hospital where he's being fed primarily with it for the last week because of pulmonary issues from a virus he caught. It is enabling him to be fed without an IV which is very hard to get with him.
I wish you strength and love through this journey you are beginning. You will truly find out who your friends are and, for me at least, find that you have many more than you ever imagined.
I love the Holland analogy. Thanks for posting.
Isn't it so odd what so many women (myself included) obsess about before giving birth... until you "end up in Holland" it's hard to understand the only thing that really matters is the health of your baby.
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