Well today I've been thinking a lot about getting prepared for anything that could happen. I bought Gavin a book about heaven and some adult books about heaven for my self that another blogger recommended. So I'm making a list of everything I want to make sure gets done here soon. It kind of a boring list so bear with me and skip to the highlighted purple parts if you don't have time to read this. I will highlight the questions that some of you out there might be able to answer for me.
1. Get keepsake kit together
Does anyone know where to find the supplies I will need?
I really want to make sure that I get Gracie's footprints, hand prints, put a print on a Christmas ornament and maybe on a Christmas stocking. If anyone has an other ideas for making memories, keepsakes, I'd love it?
2. Make a decision about whether to find Christian doctors, perinatologist, specialist? I'm having some doubts about the information we are receiving from the medical professionals and whether they are giving the best advice for Gracie. And because I don't know what's available and the difference in care between a level 2 and level 3 unit, I'm not sure what we should push for.
I get the feeling from our local doctor that if the cardiologist believes that her heart problems are not fixable our local doctor believes we ought to just deliver up here in Longview. I'm thinking that since they won't be looking at her heart right before she is delivered that they won't actually know her current status and it's possible that it will have improved from the time they do the last ultrasound until we deliver. And if that's the case and we deliver in Longview, the specialty surgeons won't be available up here.
So I'm almost thinking no matter what the cardiologist discovers we ought to go where they offer the highest level of care.
After reading other bloggers who have been through this, it seems that there are medical professionals out there who don't believe in the sanctitity of life especially the life of baby with trisomy 18 and that some health professionals don't believe these babies are worth their effort. So since I have read about this and know that this has been the experience of someone in the Portland area, it makes me want to find a Christian perinatologist and pediactric cardiologist. I know I will doubt what they tell me if I don't have a Christian doctor. I've never thought that religious beliefs would make any difference when it comes to the practice of a doctor or health professional. As a health professional my self, I didn't think it would make a difference but since I have read of these situations happening in Portland and acrossed the coutry, it has left me with doubts. And I want to be positive that we do all we can for her or if her problems aren't fixable I want to rest assured that comfort care is best.
I'm probably toiling for no reason but if I need to advocate for her care I want to be ready to. I'm thinking that I wouldn't have any problem with the current doctors we have worked with but I also don't want to have any doubts. And I'm not sure how to find a perinatologist in Portland who is a Christian or at least who believes in the sanctity of the life of a baby who has been diagnosed with trisomy 18, I don't want to have any doubts about this. So if anyone knows of one or has any idea how to go about finding one, please let me know. I know I have a little bit of time to get this arranged because even healthy babies who deliver before 28 weeks usually don't have enough lung capacity to live and the one study with babies who had trisomy 18 didn't live through delivery if they were born before 31 weeks and I'm currently 22 weeks.
The deal in a nut shell:
- if there isn't enough research to be able to predict which of these trisomy 18 babies will make it to 1 year old and even if you can predict this, it's really up to God anyway so shouldn't we be prepared to do all we can for Gracie in case she needs it. Is this rational or am I missing something (don't be afraid of offending me here if you are thinking of other sides that I'm not looking at, I really do want to look at this from all sides?)Please pray that we get the right team of professionals for Gracie.
3. Make a list of things I should take to the hospital
I don't like to pack, and I don't like lists but I know I will regret not having a list when it comes time. So I'm just going to have to think about this one. If anyone has an ideas of what's important let me know. Here are a few things, I've thought of so far:car seat, in case she gets to go home with usmusic (I'll have to work on this one, I haven't been in to music as much lately but it might be soothing for the delivery and nice for Gracie to hear also) I'll take suggestions if anyone has any.baby blanket (we have tons of these, but I'm thinking I should either make one or buy one special just for her)special baby toy or stuffed animalpremie outfits (I'm thinking I will buy something nice for her to wear, we plan to have pictures taken and I look forward to picking it out)clothing for my self (I really want to make sure and get a picture of our whole family, all 4 of us and so I need to have something nice to wear for that, as well as more cozy type things) which brings me to the need coordinate Laiman's and Gavin's clothing for this as well.toiletriesmake-up, blow dryer, flat ironCopy of birth planPhone number of people we will need to callmy laptop or arrange for someone to blog and e-mail for me
4. Pictures I want to make sure get taken
remind Michelle to contact Now I Lay Me Down to Sleep for us.
pregnancy pictures, including all of us, Gavin, Laiman and I as a group
wedding rings on her toes
family picture with all 4 of us
Gracie in porportion to our hands
Each one of us holding her
her weight on the scale
the clock with time of birth
review Gavin's birth pictures and try to get something similar-I'm thinking of the one where Gavin is hanging like a rag doll from my mom's hand and it would be nice to get one like this of Gracie so that they can be framed and hung on the wall next to each other.
5. Discuss with Laiman what to do about a memorial service and decide whether to make arrangements before or after she goes to heaven. It just seems wrong to discuss this right now with her kicking inside of me, but something tells me that it will be a lot harder to talk about this once she has gone to heaven.
decide whether to creamate or have a burial and if burial then where?
find out what the hospitals policy is on this (I read about some states where they didn't consider it a live birth unless the baby had lived for a certain amount of time.)
where to have it if we have one
6. Get birth plan in writing and discuss with our doctor.
I would really love to discuss each step of the birth plan with a labor and delivery nurse so I can understand each step of care that is standard and what the options are before we make these decisions. So I'm hoping someone knows a labor and deliver nurse that I can talk to. Let me know if you do. I contacted an organization who does this but I'm wondering if they are flooded because they haven't gotten back to me.
Not gonna happen this year...
2 weeks ago