For anyone facing a poor prenatal diagnosis or other medical issues, or even life difficulties, one phrase that you might commonly hear is "expect the best but prepare for the worst". I generally don't have that much of a problem expecting the best. I'm mostly an optimist by nature. I have a touch of realism, a bit of a sarcastic point of view at times, but I mostly see the good in people and in situations, even when things are bleak.
I know that the odds that we are facing in this pregnancy are probably around 50-50 (or if I'm realistic, probably even worse since we found the problems comparatively early, usually a bad sign) and at the moment, it's hard to tell what the outcome will be, but I just feel like things will be ok. I really believe that this baby will live. In fact I believe it so strongly that even if the doctors did give us a lethal diagnosis, I don't think that I would believe that the baby would not survive until after she was born. I think I've heard from at least 15 people who had lethal diagnoses and the baby lived, I know it's not uncommon.
What I struggle with is the part which says "prepare for the worst" and although I hope that the worst will not happen, I know that we should make plans in case it does. I know that there will be issues that we will need to work though, and in the long run, it's probably better that we consider those issues at least in part now before the baby is born, rather than having to go through all those issues in the days after the baby is born, when I'm still in the hospital recovering from childbirth, with my milk coming in and no baby to feed. If the worst does happen, in those days I want to be able to focus on grieving rather than needing to make funeral plans there and then.
It's hard to maintain a balance in this area, because one person could be so much "expecting the best" that they don't do anything to "prepare for the worst". And someone else may be so wrapped up in "preparing for the worst" that they can no longer "expect the best".
One of my new friends, the mother of a baby with a lethal SD diagnosis who lived, (find her blog here) wrote this to me in an email the other day:
I know that the odds that we are facing in this pregnancy are probably around 50-50 (or if I'm realistic, probably even worse since we found the problems comparatively early, usually a bad sign) and at the moment, it's hard to tell what the outcome will be, but I just feel like things will be ok. I really believe that this baby will live. In fact I believe it so strongly that even if the doctors did give us a lethal diagnosis, I don't think that I would believe that the baby would not survive until after she was born. I think I've heard from at least 15 people who had lethal diagnoses and the baby lived, I know it's not uncommon.
What I struggle with is the part which says "prepare for the worst" and although I hope that the worst will not happen, I know that we should make plans in case it does. I know that there will be issues that we will need to work though, and in the long run, it's probably better that we consider those issues at least in part now before the baby is born, rather than having to go through all those issues in the days after the baby is born, when I'm still in the hospital recovering from childbirth, with my milk coming in and no baby to feed. If the worst does happen, in those days I want to be able to focus on grieving rather than needing to make funeral plans there and then.
It's hard to maintain a balance in this area, because one person could be so much "expecting the best" that they don't do anything to "prepare for the worst". And someone else may be so wrapped up in "preparing for the worst" that they can no longer "expect the best".
One of my new friends, the mother of a baby with a lethal SD diagnosis who lived, (find her blog here) wrote this to me in an email the other day:
Unfortunately, I can’t say that the rest of your pregnancy will get easier. We never got the answers we wanted before Grant was born. The doctors made guesses, guesses that broke our hearts, and they still were not able to give us the information we needed. And their guesses were wrong. I was on a never ending roller coaster of having hope, then having doubt, having hope, then feeling discouraged. I turned to God and didn’t even find peace there. Nothing gave me the answers I wanted. The hospital had us participate in a group called Angel Watch. 3 nurses came over to my house once a month for the remainder of the pregnancy to help me cope, and prepare for the death of my baby if necessary. I guess it helped to have someone to talk to, but towards the end when they wanted to talk about arranging a burial plot and getting preliminary funeral plans together….I just couldn’t handle it. They gave me some papers on it, and I never read them. I realized everyone expected my baby to die, but I just couldn’t take it that far. Instead I set up my baby’s nursery. I planned for him to come home. It was a horrible time of uncertainty...
Now looking back, I wish I hadn’t let the doctors ruin my last trimester. I felt silly for buying clothes and getting my baby’s room ready, but I shouldn’t have. The doctors don’t know anything more about your baby than you do. They’ll do their best, but in the end you just have to wait and see what happens.
I too have wondered "Should I buy things for this baby?" On one hand, I want to - but then on the other, there's nothing that she really needs - and maybe if I buy things, it will make it more traumatic if we need to deal with the loss. I know some parents cope in this situation by carrying on as normal, other parents cope by just completely waiting and seeing - and if the baby does make it, they can always go out and buy everything after the baby is here anyway.
I'm trying to be balanced in this area, expecting the best but being prepared for the worst. And it's so hard to know what "balanced" is...
On a side note, I'm really interested in other people who had poor prenatal diagnoses and how you balanced these issues. Did you have any regrets, things you wish you had done differently? Did you buy things for the baby in spite of the diagnosis? Did you plan the funeral or assign that to other family members/friends? Did you do that before the baby was born, or only after the loss? I know that each person is different and I can't take someone's experience and apply it to myself, because your balance may not work for us. But I'm really interested. Please reply to this post, or email me at nicolejoy81@gmail.com
This is difficult, probably the most difficult thing about a poor prenatal diagnosis. I, too, tend towards optimism. Now, we were only told there was about a 20-25% chance that she would be ok, so you are facing better odds than we did. However, we were still hopeful. In fact I truly believed she would be fine, but I think deep down I had this tugging feeling that she might not be. I was scared to admit that because I was so afraid that by being realistic, I was "doubting" and that would cause God not to heal her because of my doubt. Now I realize I was wrong to think that way - it's funny how our situation has changed so many of my viewpoints on God - how my whole belief system concerning faith and healing has been turned completely upside down and I think I have learned much from it. Anyway, back to the question at hand - we did nothing to prepare for her loss because for one thing, I really didn't know what to do, and for another, I just didn't want to face that. Thankfully (as well as unfortunately) our hospital is well-renowned for dealing in high-risk situations, and so they face more infant death than your average hospital, and they handled a lot of things for us, telling us our options, and they arranged for a photographer to come take pictures. Do you guys have anything like Now I Lay Me Down to Sleep? They are photographers who volunteer to take free professional photos in situations like mine.
ReplyDeleteSo anyway, while we didn't plan to lose her, I don't feel I missed out on much by that. I always felt I'd rather be hopeful so I could truly enjoy my pregnancy. We didn't really buy a lot of things, because I knew either way she'd be spending time in the NICU and we'd have time to get what we needed after her birth. But I guess the one thing I do regret is not spending more time with her. So many people who knew with 100% certainty their babies would not live made plans to keep their babies with them overnight, some even as much as days, bathing them, dressing them, holding them. We had her for quite a long time the night she was born, and again in the morning. But if I had known we could keep her all night, we would have. I also regret not taking more pictures of our own - most of ours are black & white. Of course, no time would ever have been enough. But if I could do anything over, those are the things I would have done.
I feel like this comment was a bit all over the place and I don't have time to edit so I apologize for that. Hope you can make some sense of it!
We knew-100%- that our baby would die, so we made some of the funeral plans. I'm thankful I did because knowing gave us enough time to do the paperwork and get her in an old family plot a few hours from where we live. It comforts me to know that she is buried with her great great great grandparents, because I feel like it prevents her from being forgotten.
ReplyDeleteIf I were in your shoes I would prepare for the baby to live- get out and wash your baby clothes, set up the crib, etc, but have a close friend who would be able to put things away before you get home from the hospital if your daughter does not come home with you. You will not need any extra reminders of what might have been.
Also, find a photographer just in case. They will have to come either way, because your doctors may not even know right away.
I think that being in Hong Kong complicates things so much. I gave birth to my daughter at the same hospital that I will give birth this time - and they are SO STRICT about many things. Only the father is allowed in for delivery. And once the baby is born,you're allowed to stay in the delivery room for maybe an hour, but then you go back to the ward and all visitors need to adhere to their strict visiting hours (which add up to three hours a day). I don't know if they would be more flexible in a worst case scenario, I guess I need to ask them. This hospital has the best medical care in this part of the world, but their "patient care" is very poor, in my opinion. All that to say, I don't know if/when a photographer would be allowed in... And I don't think that we have anything like Now I Lay me Down to Sleep over here either...
ReplyDeleteI also think that being here complicates the funeral plans as well... plus we have fewer friends who we could ask to do the hard jobs... people have been surprising me though, with how supportive they are...
I will definitely wash Lana's old clothes though, try to get her into a "big girl bed" so that we can use her cot for the baby, get a space ready to bring the baby home...
I just wish we didn't NEED to prepare for the worst. But I feel as though we'd be in denial if we didn't acknowledge that it's not completely unlikely...
I found it impossible to buy anything for my wee man before he was born and even for about 10 weeks after he was born. I felt that if I did I was going to jinx things and he would die. Even now I can't buy clothes for him that he can wear when he is older. When you have had as rough a time as people like us have had it is very hard to believe that things will be O.K.
ReplyDeleteI planned my baby's funeral with my mother as I waited in hospital. I needed to have someone who knew what I wanted and would take charge if my baby did die. I, like you, just wanted to be able to grieve without worrying about being too practical. I used to lie awake at night and play the funeral through in my head. It was a terrible time.
I made sure my doctor knew that I wanted to be with the baby if he died. In the end I had to be taken away for surgery but they made sure I said goodbye before I was taken away.
I made sure my Mum knew who I wanted to meet the baby. There were some people I wanted there if the baby lived for a short time and others that I only wanted to come after he had passed. After Owen was born he was very close to death for about 2 weeks. It was very difficult having people come to the hospital. That time is so difficult you just exist in a state of shock. I felt like I had to entertain people. So ridiculous when I think back.
I know people found it quite odd that I could speak about my baby dying with such frankness. In fact I was my own worst enemy because it made the medical staff think they could be extremely blunt about how bad the situation was. I just tried to keep on a brave face. I sometimes wish I hadn't done that so much.
I think you are right when you say that everyone deals with these things in different ways. I just wanted his life and probable death to have some grace and for people to know about him.
I think you have already made your daughters life very special.
As someone who has lived through "the worst" part, I can say - dont deny yourself the pleasure of preparing for your baby to come home.
ReplyDeleteIf we had known that our baby would die before he was born, I still would have bought him things, I still would have prepared for him. Having these things has not made it harder for me personally.
When we were in the hospital grieving, my SIL came and took all of the baby things out of our house so I was not confronted by them straight away when I came home. We went and got them a few weeks later when I felt stronger. Having his things around has helped me, in a way. Everything that was purchased for him has special meaning to me. Every time I open something for my Monster baby - something that was bought for my Starbaby - I think of him. I think of how we might have played with those toys, or what he might have looked like in that outfit. It brings a smile to my face, sometimes a tear to my eye, but I wouldnt take it back.
I guess what I am trying to say is that its ok to plan for the possible funeral - probably its wise. I wish I had had the time to prepare and do all the things that I wish now I had thought of. But don't deny yourself the pleasure of imagining this baby in your lives, of preparing and buying little baby things. Because the future is not certain.