Tuesday, July 13, 2010

Some answers, but not THE answer - a long post

Dear Jacob,

Today was a big day.  A day that I have been both looking forward to and a day that I have been scared of.

I went back to see Dr. A today for my 6 week post-partum appointment.

It was hard, so hard, walking into her office again. I held it together, meaning I didn't break down sobbing, but just barely. I still cried. When Dad and I got there, Dr. A wasn't there and there were 3 pregnant woman waiting there. I went to the bathroom right away and had a little mini breakdown. Of course, right beside the bathroom is the exam room that I was in when Dr. A couldn't hear your heartbeat and I looked there without even realizing it. Not a good thing to have done.

When I went back to the waiting room, I sat next to a 4 month or so pregnant woman and there were a couple of 8-9 month pregnant women there. I just stared at the floor and somehow stopped the tears. One woman was there with her Mother and I saw the Mother looking at me from time to time. She could tell I was upset, but I'm sure didn't guess that my baby died.

I thought about asking to go and wait in one of the exam rooms and I considered standing in the hall to wait, but I told myself to just stay there, that I could do it. It is like I had to prove it to myself. But, once again put myself in a situation where I feel terrible. I just do it all the time. I guess I somehow like bringing my pain right to the surface sometimes.

Dr. A arrived and said hi to everyone then Jan, her receptionist, starting showing people into the rooms. I think Dr. A just came from the hospital since she was in scrubs, she probably just delivered a baby.

Jan called me in and of course took me to the room where I found out you died. I couldn't step foot into it. I just stood in the doorway and said that I found out that you died in that room and could I please go into the other exam room. She apologized, said she didn't realize and of course I could. I had to wait in the waiting room a bit more though since there was someone in there. Once Dad and I were called in, we just stood there and hugged each other. That was the room that I heard your heartbeat for the first and last time (I only actually heard it once - I didn't even get to listen to it for that long at the 4 month appointment because Dr. A had to run over to the hospital to deliver a baby). I am so scared that I will forget the sound of your heart beating. It was perfect that day, May 3rd. How my life has changed since then.

Dr. A came in and was nice, as always. She asked how we were doing. I said we were coping and she asked if it was getting better. I said it was, a little bit everyday, but there are still just plain bad days. She asked if we were getting counselling, which we aren't, but I told her I talked to a woman from church and that I have been going to online support boards and that has helped me enormously. She mentioned Rev. Mike and how calm and comforting he was. She was there when he was in the room saying a prayer right before you were born. She also thanked me for the letter I wrote to the hospital 4 days after losing you. I found a place for patient comments on the hospital website and said that she was amazing throughout the experience and that 2 of the nurses I had were really good too. The hospital replied, saying they would forward my comments to everyone mentioned. Dr. A thought it was really nice of me to do that, especially considering what I had just been through. I just figured that the hospital administration should know that these 3 people made my experience so much better.

Then we finally got down to what I really wanted to know. She said that my blood work was normal. There was no infection and no clotting disorders. So that is a relief, but she didn't have the autopsy results yet. I was pretty disappointed about that. She did say that the placenta was a little small, but that shouldn't have caused your death. I asked if it could have been an amniotic band that wrapped around your umbilical cord and she thinks it may have been. She said she should have the autopsy results back by 8 weeks, so if I don't hear from her in 2 weeks, I should call her and they will call the hospital to get things moving. She explained that they may be getting someone else to look at everything before doing the final report and they do all the cancer biopsies first, which I totally understand.

The good news is that we can start trying again. She said that she knows I will probably have some anxiety and I said that I would have alot of anxiety. She said that she almost always sees a good outcome after a loss like this, she can't guarantee it of course, but is very hopeful. I had to bring up that I just don't think that I did anything wrong that could have caused you any problems and she said that unless I was a crackwhore, I couldn't have caused anything. I also asked if you would have felt any pain. I was so worried that you might have felt pain. She said she just doesn't know (I like that she is honest). I don't think you did. My Dad found an article in the paper about when babies can start feeling pain in utero and they said it was about 26 weeks, so that had brought me some relief.

She also told me that she had a miscarriage between her 2 kids and that it doesn't matter how early or late a loss is. A loss is a loss and it is all terrible, but that we have all had something terrible happen in our lives. She told us someone was really surprised that she had a miscarriage because she is an OB. We had a little laugh at that, like she is exempt from that sort of thing because she is an OB. I asked how she handled anxiety during pregnancy since she has seen so many bad things. She basically said you just do. She used to be a pediatric nurse before becoming a doctor and she saw a lot of bad things then too.

I don't think she realizes how much I want to know everything, that it bothers me more not to know than to know. I'll have to tell her that next time. I asked what kind of complications could have arisen since you were breech (since it obviously wouldn't effect your survival) and she didn't really say, she just said why think about the bad things that could have happened. I guess it makes me feel a little better to know what worse thing could have happened but didn't.

We asked about whether or not I would be high risk next time and she said there isn't really a reason for me to be since I didn't have diabetes or a clotting disorder or something like that. Of course, if I'm not high-risk, I won't go in to see her more often and I won't get as many ultrasounds. I asked about the ultrasounds and she said that sometimes that can cause more stress than reassurance. I know I would be stressed out before them, just in case the baby was dead so I can see that, but I think I still want them and I told her that. We can work all that out when there is actually a baby on the way though.

After we asked all our questions, she hugged me. She didn't examine me to make sure my cervix is closed or anything.

I have to take 5mg of folic acid from now until the end of my 3rd trimester and she gave a bunch of free samples and said that she hopes to see me soon (I hope so too since that would mean that I'm pregnant) and that I can call her if I need anything.

After that appointment, I don't even know how I felt. Relieved that I don't have a clotting disorder or some other problem, but unsatisfied too. Of course, I always feel unsatisfied these days. I am empty because you aren't with me, I will never hold you in my arms again. I wonder if this empty feeling will ever decrease so that I don't feel so incredibly empty all the time.

After leaving her office, we drove to the church to visit you in the garden. It is Vacation Bible School this week though so there were a bunch of kids in the garden and we couldn't really go in and start crying. I liked seeing the kids run around there, close to where you are buried. We went into the church and saw my Mom and sister Laurie, who are volunteering there and told them what happened. Then Dad and I walked by the lake and back to the church, around the downtown and back to the church again. I saw Rev Mike's wife and she asked how we are doing. I told her about the appointment and how Dr. A mentioned Mike and I asked how his knee surgery went. Then we went upstairs and saw Shirley and Rev. Jacquie, who I have never actually met before, but Mom told me that she looked really sad back in June when she found out that you died. We shook hands with her and she looked sad - she didn't say anything, but I could tell by the look on her face that she felt bad for us. We asked Shirley where the book is with your name in it - with all of the names of those who are buried in the garden. The calligrapher hasn't been in yet, so your name isn't there, but at least we know where the book is now.

While we were sitting on a bench near the garden, I saw a butterfly land on some bushes and then fly around the corner to where the garden is. I am always looking for signs of course. Was that from you? How about the little white butterfly that we saw on the path by the lake?

We went to Mom's house for 2 hours and then went to Dr. D (my family doctor) for my appointment. He walked in the room and gently asked what happened to me. I just said "my baby died" and started crying. I didn't cry for long, but my voice was pretty husky for awhile. I went through what happened and he said how sorry he was a few times and how it was just terrible. He said when he started seeing the reports that Dr. A was sending to him, he felt so badly ( why he didn't call then...). I told him how you had amniotic band syndrome and said that I know it is rare. He said that he has delivered over 1000 babies and has never seen it. Lucky us.  He kept asking if I was sleeping OK, which I am most of the time, but there are bad nights where sleep doesn't come easily. I think he wanted to give me something to help me sleep, but I don't want anything. He asked if I was depressed. I said yes (of course) but not clinically. He told me how his sister had 2 miscarriages with her first and second pregnancies and she thought she would never be able to have a baby, but now she has 3 healthy adult children. I love hearing stories like that.

I saw on the computer that he had some reports about you - a preliminary autopsy summary, another general report about you and a pathology report. I asked for copies of all of them and having them has actually made me feel a little better. I need to see these things and read them over again and again.

They didn't really tell me anything that Dr. A didn't, but it confirmed the diagnosis of amniotic band syndrome, said that there was evidence of abruption (shouldn't that make me high risk next time - I have to ask Dr. A about that), no sign of infection and that there was 'fetal demise'. One of them also said that tissue has been sent to another hospital for further analysis, so I guess that is what Dr. A is waiting so that she gets a full, final autopsy report. I really wanted to know when your autopsy was done and now I know. It was on June 2 at 2:15pm. It also said that other than the amniotic bands, you were 'normal morphologically on external and internal examination".

Overall, I'm glad I got some answers. I don't really expect to get more. I felt terrible most of the day though.

I just want you baby. I tell myself to be grateful that you won't have a lifetime of suffering. I am grateful for that. It would have been pure hell watching you suffer everyday and not be able to do anything about it. We just don't know how much damage the amniotic bands would have done.

 I'm not asking why this happened to me. Why not me? But I do want to know why this happened to you, my wonderful, innocent baby who did not deserve this. You deserve to live a good life just like everyone, but you didn't get it. I'm really trying to believe that you are better off where you are, that you are happy and healthy and that you will never feel any physical or emotional pain.

I am so mad that there were bands in the first place.

I'm sorry I couldn't save you. So, so sorry.




Angela said...

I was thinking of you today Dana. I am glad you received some answers. It sounds like it was a long, tough day, but you made it through. Proud of you.

fre1622 said...

Hi Dana, I've been reading your blog after seeing it listed on another one that I follow. I am so sorry for your loss. A year ago today, my daugther lost her baby Jeremy at 27 weeks. It was the worst time of our lives. I wanted to share with you the words she wrote on her birth club (June 2010) last night. (also, my 15-year-old son's name is Jacob. I love the name.) I hope Kristina's words bring you a little bit of hope:
A year ago tonight I got the worst news anyone could get. I was 7 months pregnant and from my 20 week ultrasound I was being told there was something new wrong with my baby. It started with a "light spot" on his kidneys, then it went to enlarged ventricals" in his brain. I had a high risk doctor who I was really questioning because he just kept sending me for testing and MRIs and wasn't on the same page with my hospital or my doctor. Well a year ago tonight I stopped feeling my baby kicking. I went into Labor and Delivery, they hooked me up and sent me for an ultrasound then was sent back to L&D where I was told the baby had passed. Jeremy was born still on July 14, 2009. My doctor requested further testing to get me an answer for the cause of death. I have an incompetent cervix and a bloodclotting disorder, PAI-1. I never thought I would get through that part of my life. For a while I was angry, depressed and I felt like it was my fault and I couldn't forgive myself. I met with the bereavement councler at my hospital and she set me up with a support group where we met 3 other wonderful couples who have become some of my great friends now. If it wasn't for them I really don't think I could have gotten through that part of my life. Well tonight is a very emotional night because on June 8th, 2010 I gave birth to my beautiful baby girl Kaitlyn. If you would have told me a year ago she would be here I wouldn't believe it but her being here is such a blessing. I had an amazing doctor who went out of her way to get this baby here safely. Every day that I was on bedrest, had a painful shot in the stomach and painful exams during my pregnancy, it was all worth it because Kaitlyn is a very happy, healthy baby. Because of Jeremy I know so much more than I did before. He made me a stronger and more mature person. I think about him every day and I know that he is with me and his little sister Kaitlyn. I'm sorry this was long but I just wanted to post this in honor of my son Jeremy and give hope to anyone who needs a little bit of it right now. And as sad as I am over losing Jeremy I am just as happy to have Kaitlyn here.

Violet1122 said...

Oh Dana - I was thinking about all day yesterday. I'm sorry you didn't get all the answers, but I'm hoping you get them SOON.

I'm sure those butterflies were signs from your Jacob.

I'm glad you got the green light to try again. I'm praying that you will soon have a healthy baby to hold in your arms.

Nicole said...

Dana, you are so brave to want to know everything the doctor can tell you. Some people don't want to know, but it's good that you are so adamant about the truth. I know it's so hard to have to wait for all of the results. Being patient can be rough sometimes! Especially when it's over something like this.
It's precious that you noticed the butterflies... Butterflies remind me of my Avery and they make me smile.
I know without a shadow of a doubt that where Jacob is, he is happy and perfect and playing and laughing... and he knows his mommy loves him. :)

Emily said...

Oh how I wish that phrase could be struck from the English language. "Fetal demise". Aidan wasn't born dead (he lived...for a whole 54 minutes), but I worried during the last 6 weeks of my pregnancy after that 'fateful' ultrasound that maybe that phrase might apply to him at some point. We had rented a home doppler and I checked every other day and held my breathe each time until I could pick up Aidan's heartbeat. His heartbeat didn't save him in the end though.

I'm sorry that Jacob experienced "fetal demise". It's so clinical. It's so cold. It's clinically accurate, but belies the truth. I cannot think of a phrase that quite captures the horror of it, but I wish someone would.

For you it should say on Jacob's autopsy report
"wonderful, perfect, sweet, very loved and wanted baby boy died. His mommy and daddy are crushed". It would sum up the clamity of it much much better than "fetal demise". Wouldn't you agree?

Julie said...

dana, i'm sorry you didn't really get any answers that help, but then, i'm not sure any answer would satisfactory for the question, "WHY is my son dead?", which is a question i ask all the time. i'm sorry your doctor's office wasn't better prepared for your appt, in terms of making you comfortable while you waited for your doctor.

my dr's office deliberately made my post-partum appt for the very end of the day when there would be fewer other patients there, and when my dr wouldn't have to rush off to see some other patient. they also sent us straight into an exam room b/c they knew we wouldn't want to wait in the waiting room w/ all the pregnant women. i found out kenny had died at the hospital, but if i had found out at their office, i THINK they're sensitive enough about that situation that they would not have tried to send me back into the same room. i wish all offices had the sense to be more sensitive about this.