Tuesday, August 2, 2011

Ups and downs....

I actually started to get some things accomplished yesterday.  I called Dr Stewart's office to make him aware of our choice to carry to term.  I am still waiting on a call back though.  In the mean time I called Paragon to get a form so I could have my medical records released to Dr Stewart's office and cancelled my appointment with Molly, my mid-wife.  Then I got to thinking.... why can't I have a midwife birth just like I did with Ashlyn?   My labor experience with Ashlyn was amazing and the biggest reason that it was such a wonderful experience, besides the only pushing for 18 minutes, was because of Theresa the mid-wife that delivered Ash.  Why should I have to give that up now when I need that support more than ever?  So I decided to call and ask if it would be possible for me to stay with the mid-wife group at Paragon.  The Triage Nurse that I spoke with didn't know but said that she would have Molly give me a call.  Well, after talking to both Molly and Laura, also a mid-wife, they agreed that it would benefit me to have mid-wife rather than a doctor present.  No offense to the doctors, they are wonderful but you do not get the same support and comfort with them as you do with a MW.  When I had Ashlyn, Theresa was with me almost the entire time I was in labor.  She and the labor and delivery nurse were the ones that kept me calm when I got my epidural and helped me through some of the difficult times of my labor.  They kept my spirits up and I NEED that with Quinn more than anything!  Molly did talk to one of the doctors and she was very supportive of my decision but did ask her to bring it up to all of the doctors to make sure that they were all in agreement.  Though my pregnancy will not completely be considered high-risk, it is still out of the normal realm for the midwives so getting all of the doctors approval is a must.   I should know the final decision on Thursday or Friday but Molly was pretty sure that no one would have a problem with it at all.  This makes me so happy.  I DID NOT want to have to give up the labor experienced that I wanted with Quinn just because of the situation. 

That was the up of my day.  The down was Steve and I's talk after Ashlyn went to bed.  We know that there are many decisions that we still have to make and one of those is the care that we want for Quinn should she be born alive.  Right now I am leaning more towards comfort care; oxygen, that sort of thing.  I do not feel that I would want them to resuscitate her should she pass.  I want her to be as comfortable as possible and if she must leave us I want it to be as peaceful as possible.  I do not want to make her suffer anymore and sadly, I do not feel that any resistive measure they may take for her will help her.  Steve on the other hand wants to do everything that we can to keep her for as long as we can.   I completely 100% understand this and I do too but my biggest wish in this whole situation is that Quinn suffer as little as possible.  I do not want to put her tiny little frail body through too much just to possibly get a few more hours with her.  I also do not want to keep her alive artificially.  Ugh, there is so much to think about and much much more research to do before we can make any decisions.  I want to do what is best for my daughter, as does Steve and this is one of those decisions that we have to be 100% in agreement on.   Thankfully we are both very open with each other and I know that we will be able to do that.
So not only do we have to make decisions like that, we also have to prepare for the best and worse case scenarios.  What sort of hospice care will we need should she be able to come home with us?  What type of burial do we want for her should she not get to stay with us?  A large service or a very small private service?  I am leaning more towards very private but I think that Steve is needing something more than that.  This is one thing that I can compromise on. 

Too much to think about!  Tonight Steve and I are going to see Journey in concert with some family and friends.  I am very much looking forward to a fun relaxing evening!


Gayle Himmelwright said...

Hi Meghan,
I came over to your blog from the Trisomy yahoo group. Your ability to put your thoughts and feelings into words is wonderful, and I hope that it helps you work through them. I know how gut-wrenching it is facing all of the unknowns and trying to make decisions nobody should have to make. I will be praying for strength and comfort for you and that you will get to meet your little Quinn and be able to spend as much time together as possible. My son, Josiah, was born last summer with full T13, and we were able to spend almost 2 months with him, so don't give up hope. It was still too short, of course, but it was a treasure. If you ever need someone to talk to, don't hesitate to contact me.
Gayle (gabengayle@verizon.net)

Miranda said...

Hi Meghan,
Monica Rafie showed me your blog because my husband and I were also, just 3 weeks ago, told that our baby girl has Trisomy 13. Reading through your blog - I would swear we are the same person because I have had some of the exact same feelings and conversations that you have had. This is by far the most difficult thing we've ever had to deal with and some days I just don't know if I will have enough strength to make it through this. We are now 23 weeks along and have absolutely decided to keep our little girl. It is definitely in God's hands, but like you said - I want to give her every chance at life as possible. I feel so helpless in this situation - I have no control over the outcome - but I can control giving her as much love and affection as possible every day that I have her. Her little bumps and kicks are, like you said, like she's telling me she's still there and she's okay. I treasure each and everyone of those movements. We live in Ohio as well - near Dayton. Please feel free to message me if you ever want to talk. You can find me on FaceBook as Miranda Oldham. Take care of yourself. --Miranda

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