Saturday, March 12, 2011

Baby Joel

Our Sweet Baby Joel came into this world on March 8th, 2011. We induced his birth because of some very serious brain malformations that had occurred that were incompatible with life. We made the heart wrenching decision to terminate the pregnancy and here is the story.

Our son Joel has no frontal lobe in his brain. We were told at 12 weeks that he would not be able to survive outside the womb. We were sent home with a difficult decision to make. Terminate this very wanted pregnancy or continue it with the knowledge that a baby wasn't going to be living with us afterwords. We read, we did research, we got second opinions. Everything we read pointed us toward termination. We have two children already, they need a mother who can do more than cry in bed most of the day and a father who can go to work everyday and earn a living. We both need to be there for these kids and we felt crippled by this knowledge. The more research we did, the more it looked like this baby wouldn't make it to term anyway. He would most likely come late in the 2nd trimester. The doctors we talked to said that a stillbirth at that time can be risky for the mother and future pregnancies. Technical names like incompetent cervix or uterine scaring were thrown around while our heads were spinning.
The night we got our diagnosis I told my husband that I wished I could just give birth and have this over with. I wished that I could have the baby and hold them and tell them goodbye and then begin to heal and look toward the future without the awful waiting period of pregnancy to go through first. As we looked into our options, we realized that this was possible but were told that it probably couldn't happen for about 6 weeks. Then at our 14 week visit with the high risk OB/Gyn they told us that they had found a doctor who could and would do an induction of labor but only if we agreed to do it the next week. He felt that the risks would be higher if we waited. He also turned out to be the only doctor in our very large metropolitan area who would consider doing an induction at all so he was our guy. Our other options were to do a D&C (Dilation and curettage, they use tools to scrape out the contents of the uterus) or a D&E (Dilation and Evacuation, they use suction to empty the uterus). Neither of these options would allow us to see or hold our child, I would be unconscious for the procedure, neither of these options would give us the closure we were so desperately searching for and neither of these felt like a good way to honor the person-hood of our child.
After all the discussion, all the weighing of options was over, we decided to trust this doctor and do this on his time table. We made arrangements for our kids, my midwife Kim was able to come with us and we checked into the hospital late on a Monday night at 15 weeks 3 days gestation.
I was hooked up to an IV. I argued to have a hep-loc instead of a constant IV so that I could have more freedom of movement. They drew blood and then the doctor took out the laminaria that his partner had placed that morning.
The laminaria are little bits of seaweed that absorb water and when placed in the cervix, they will expand and dilate the cervix. The partner had put in the laminaria that morning and then placed two sponges behind them so that they wouldn't fall out before they expanded. When we got to the hospital the doctor took out the sponge but was having some trouble finding the other one. His examinations had been rough from the start but were quite painful when he was looking for the other sponge. It turns out that the sponges had been squished together and had both come out already. He finally realized this and removed the laminaria. Then he put in the first dose of Cytotec.
Cytotec is a medication that is used for people who have ulcers. It was not developed for women who are in need of an induction. The strong uterine contractions it causes are a side effect of the drug. The drug is commonly used against label because it works so well at bringing on labor but in full term pregnancies it does have some very nasty side effects like hyper-stimulation of the uterus and a marked danger of uterine rupture when used for a vaginal birth after Cesarean (VBAC). Because this wasn't a full term pregnancy, hyper-stimulation was of less concern to us and since I have never had a Cesarean, we felt cautiously safe about using it.
I went to sleep after the first dose and didn't wake up until 5am when the nurses assistant came in to check my vitals. I reminded them that I was supposed to have gotten another dose of Cytotec at 3 and the resident came in and gave me another dose. The drug was inserted as close to the cervix as the doctors could get it and about 15 minutes after the 2nd dose was given, labor really started to kick in.
Kim had gone home for the evening but by 6 am the contractions were strong enough that Dilbert felt that he needed to call her to come back. It turned out that that was a really good idea.
The contractions were not like any I'd ever felt before. They didn't rise in a wave with a peak and a rest in between. They came in jumps and starts. I'd have about 40 seconds of rest and then a 30 second contractions that hit me like a truck. Then it would be gone. Later, I had longer breaks but much longer contractions, it felt like there were 2 or 3 of them coming on top of eachother with no break in between.
I tried several different positions but just couldn't seem to find one that helped ease the pain at all. Kim had left the birth ball with us but the room was too cold and I didn't want to be out of bed for very long. Plus, by then they had insisted on an IV and nothing by mouth so moving around was difficult.
I got back into bed and just tried to sit forward as much as possible. We put the bed all the way up so that it would support me and I tried to sit cross legged but that was uncomfortable too. Toward the end I asked Dilbert to stand at the end of the bed and let me pull on his arms so that I would be leaning forward.
I'd asked him too before and so he kept reminding me that we were doing the right thing. When contractions got more intense I started to sob through them. The nurses, when they were there, talked about getting me something for the pain but in the middle of a massive contraction I shouted "No! No! No! I'm only going to have a minute with him, I don't want to be loopy!"
As the contractions kept coming and I kept crying I started whimpering for Kim. Whenever I had a rest I tried to remind Dilbert that it wasn't because he was doing a bad job, he was great, I just knew Kim was bringing the heating pad and her calming presence and I really felt like I wanted both right away. She did get there at about 7:30. She slipped in quietly while I was in the throws of a contraction, held my hand for another one and said I sounded "Pushy." "Maybe you should just try a little push with the next contraction." she said.
When the next one hit, I gave a little push and it felt so good to do something with this one. I pushed just a little and felt something come out. I threw back the blankets and there he was.
I started wailing then and told Dilbert to pick him up so he could feel a loving touch in case he was still alive. I looked at him an wailed and wailed and cried like I never have before. There was a Bible verse that kept going through my head. It was from the Matthew 2, the slaughter of the innocent by Herod, what went through my head was "WEEPING AND GREAT MOURNING, RACHEL, WEEPING FOR HER CHILDREN, AND SHE REFUSES TO BE COMFORTED, BECAUSE THEY WERE NO MORE."
Joel was not born with a heartbeat so we had them clamp and cut the cord so that I could hold him. I asked Kim to steady my hand because I was shaking and weeping so hard. I kept saying "I'm so sorry baby, I'm so sorry." over and over again.
The doctor came in and started trying to grab the placenta. He couldn't reach in (though he tried despite my protests and obvious discomfort). He ran out and Kim told me to push with everything I had so that I wouldn't have to have the really scary drugs that he was running to get. I pushed just a little and it came out intact. Kim did a fundal massage then to help the uterus clamp down but I really don't remember much of what happened after. I was looking at the baby.
He was absolutely perfect on the outside. He had these perfect little hands and feet. This tiny little chin and even ears. He had the sortof bug eyes of a 15 week fetus but he looked as perfect as he could. His skin was very thin and so this made him look very red. We had thought about letting the Pudding come see him but ruled that out because of this. After he had been out for a little while, I could feel him getting colder so I put him on my chest to keep him as warm as I could. I knew it wouldn't do any good for him, that he wasn't really in there anymore but some primal maternal instinct told me I had to keep my baby warm so that's what I did. We wrapped him in a blanket that had been made for him, it was too fuzzy and left little bits of wool on him but I really wanted to keep him warm so I didn't mind the fuzz.
We had him with us for about 3 hours. A friend who is part of the Now I lay me down to sleep group came and took some pictures for us. The photo at the beginning of this post is her work. A kind nurse took him to print his feet and weigh him. She did some clay impressions of his feet as well. She handled him so gently and kept him covered while she had him out. I was so grateful for that. I thought he was beautiful but I knew others wouldn't see him that way so I was glad she kept him away from the eyes of others.
The longer he was out the more we could see changes in him. He began to wrinkle and whither a little. His skin dried out and he sortof seemed to sink a little. Despite my best efforts, I couldn't keep him warm anymore so we knew it was time to say goodbye. We held him and kissed him and told him we loved him very much. I told him I would miss him. Then we handed him over to the nurse who took him away.
We had him cremated and have him at home now. We had a small funeral for him yesterday. In the days in between his death and his funeral we actually felt a lot better. We felt like the weight of decision had been lifted and we were out from under the burden of this huge aweful thing that had come to us for the first time in nearly a month. Today is a little harder, we have to get back to normal now, I have to start cooking again, Dilbert has to go back to work on Monday, we have to discipline our children and be parents again. I'm sure things will get better soon, we feel like we now have the permission to look to the future again. We're making plans to not make plans. We're going to take a trip, we're going to move on past the darkness.

1 comment:

Mac Allison said...

Thanks for sharing this. It was so painful I know, but you are brave for telling your story. I am glad that you have told your story.