Tuesday, January 27, 2009

Hard decisions

Just when I thought I had my emotions under control, I reached 28 weeks and the realization that this pregnancy won't last forever. There are so many decisions Dave and I will have to make in the next 12 weeks that I don't want to face, but I also know that I won't be capable of making those decisions at the moment they will need to be made. As much as I like to pretend I have things together, I have to admit that I don't. There are so many decisions to make regarding Lily and her birth. . .and her death. I've yet to find any of them that I'm comfortable with making. It suffocates my heart to know that a decision we make for her life to be comfortable might actually cause us to lose her. I cannot bear to think that she would be in pain.

In the near future, Dave and I will have to create a birth plan. This involves
  • whether or not to have constant fetal monitoring. This is to keep the stress off of us if her heartrate were to fall.
  • whether to have a c-section or not if Lily's heartrate falls after contractions during labor, which it is likely to do. I can see both sides to this issue, but I'll talk about them in another blog, maybe.
  • skin-to-skin contact after birth--one decision I don't have to make.
  • whether to resuscitate in the event Lily is not breathing and for how long. We know we don't want her on a breathing machine.
  • whether to immunize, give eye drops, etc. after she is born
  • handling--do we just want to hold her or do we want the doctors and nurses to do their routine procedures
  • bathing--do we do it or does a nurse do it. This could be the only bath we are able to give her if she does make it through labor.
  • rooming--will she stay with us or go to a NICUnit?
  • surgery--will we opt for any surgery if she needs it to be done, knowing that only 10% of these babies live past their 1st birthday?
And then, there are the decisions we have to make on the birth plan in the event she is stillborn. Since that is a possibility, we also have to make funeral plans. I've never had to plan a funeral. I have no idea what's involved, and I just keep putting off calling the funeral home, but I'm so overwhelmed with decisions that doing it would be another check I can put on my list. I think I'm just waiting for the day when I can call and not cry over this situation as I talk to the director.

What if she lives? There's something else Dave and I are dealing with. How are we going to care for her? One of us might have to quit work. How will we handle that financially? We've already sat down and looked at our bills. OK. What can we sacrifice if one of us has to quit our job and can we afford that? What will life be like? Are we going to face a two-hour feeding interval? I'm not ready to face these decisions, either.

Then, there are the questions about coping. Will we cope? How are Rani and Autumn going to handle this? They are grown girls, so they aren't as dependent on us, but will we be able to give Gabriel the care he needs? What are we going to do with him while I'm in the hospital? I'll be there with Lily all the time, of course, but what if Dave doesn't want to leave either? Where will Gabriel stay? Who will take care of him in those three days?

So if you pray, and you are praying for my family, please pray with us that (1) we are able to handle these difficult decisions, that we not get so overwhelmed, (2) that we make the right decisions, and (3) that we encounter professionals that will help us make the right decisions, those based on the value and respect and dignity of life and not on the prognosis of death. I thank you for the time you spend with us in your reading of this blog, your thoughts, and your prayers. I am choked for words, but I am so thankful for your support.


  1. Jill I pray that God gives you and Dave an overwhelming sense of peace about the decisions you have to make. I pray that he will make this process as painless and easy AS POSSIBLE. I pray that you will have confidence in your decisions and the staff working with you will honor whatever you decide. I pray the best for Lily's life, that it be painless and that she wouldn't suffer, but that God would do a miraculous work in her life and give her time on earth with you and your family to love and pamper her. I'm in this battle with you and I'm praying for you daily. One day (hopefully in the far far future) Lily and Maddox are going to meet in heaven and talk about what great families they have and they'll be able to play with each other!!!

    I'm lifting you and dave up daily.

  2. A fellow T18 mom here. As I come to my son's first (would be) birthday I think a lot about my journey. It's hard, it's sad, but your child is worth it, period. Whether you have some time, or no time or lots of time, taking a chance on your baby will never be something you regret. They're amazing creatures, capable of things we don't expect.

    Reading down your blogs, I had to laugh because my little Leland positively FREAKED OUT when my husband put his arm around my belly at night. We couldn't decide if he was excited to know him, or wanted him to move his arm, hahahahaha!

    May love and laughter be your companions along with everything else through a very trying time.


  3. Hi Jill,
    I came across your blog from the T18 support site. I am 23 weeks and struggle with the same questions you do ... my daughter has been diagnosed with T18, but to date, has no major anomalies other than small gestational age. We have an echo scheduled next week and every day that she is still here with us makes me hope, believe and pray that we have time with her when she is born ... I will certainly pray for you and your family and ask for the guidance you need to make these hard decisions ... take care.