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.

"Incompatible with Life"

***Disclaimer...This is NOT a judgment on parents who have terminated pregnancies for reasons I wouldn't have. I am so sorry for those parents who have had to face this decision and I understand how hard it is to make because I'm there now and it sucks. This post is an extension of my own grieving inner monologue. In addition to parents who've terminated for reasons I wouldn't, I'm also angry with cranky pregnant women, women with newborns who look annoyed and my own children who get cranky with me for being sad. None of these are logical or lasting so please do not take any of this personally. This is grief talking, and it ain't pretty.

A time to decide, a time to heal. That was the name of one of the books the genetic counselor gave us after we found out about the holoprosencephaly and that, for our baby, it was "incompatible with life."
The copy we got was just that, a photocopy of a book, we could occasionally see a pair of very hairy hands that were holding the pages in place on the copy machine. Nice watch though. I read the book in one day (its not very big) and cried through most of it. I read story after story written in parents own hand of their decision and how they dealt with it.
Many parents talked about how healing it was to hold their baby after the pregnancy had been terminated so that they could say goodbye and know that their baby was real. They name the baby, have them baptized, dress them, take pictures and hold the little life that never quite made it.
There were many different diagnosis that prompted the termination of these pregnancies. I found myself angry with the parents who terminated for reason's I wouldn't have. The babies with downs syndrome or sever retardation that I would have kept but they didn't. Those parents were given the option of life, I wasn't and I'm angry about that. I'm angry because I would kill to be able to have my baby alive and see them look at me with the flicker of recognition and trust that my previous babies did. I'd kill to have a baby who had a chance at life, no matter the state of that life. I'd love to be learning how to live with a high needs child and how to make their life the best I can. But those are not options I have just now. The only option I have is death now or death in six months. All I get is "incompatible with life."
So I'm angry at those parents who had life, and threw it away. They took the precious life they had and decided not to take it because it wasn't perfect and wouldn't ever be.
I understand that quality of life weighs into this decision and that parents don't want to cause their children suffering and sometimes it just seems easier to end a life before it really begins than to deal with the imperfections. But from where I sit now (and I'm sure this will change because everything does) I just can't understand not being overjoyed because at least your baby had a chance. There was a chance for life. From one who is incompatible, that seems like a lot.

A Long, Bad Day

On Wednesday last we had a routine ultrasound for our third child. I was at 12 weeks gestation and measuring a touch big so we wanted to confirm dates and make sure it was only one baby, not two. We brought the Pudding and the Tyke with us so they could see pictures of their new baby brother or sister. The ultrasound tech made me change into one of those awful gowns, squirted the goo on my belly and did her thing. After the initial scan she stepped out to talk to the doctor which is all pretty normal. But she seemed to be gone for a long time. When she came back she said we needed to do a trans-vaginal scan as well because my cervix was a little tipped or something like that. I said ok and since the kids had already been banished to the waiting room for being children she went ahead and did what she had to do. After that was done she consulted with the doctor again for a long time before giving me the ok to get dressed and leave.
I went home with the kids, put my son down for his nap and generally went on about my day then at about 3pm I got a call from my family doctor. She is the one who ordered the scan because if my midwife does, insurance won't pay for it, it's a whole thing. Anyway, she said that the scan had been irregular and that there appeared to be a cyst on the baby's brain so we needed to talk to the people at Maternal-Fetal medicine.
I didn't believe her.
To be fair to myself here, this is the same doctor who sent me to get x-rays when we knew I only had a sprain, sent me to a specialist when that same x-ray showed a sclerosis that hadn't ever bothered me. The specialist took on look at the picture, asked me if it bothered me at all and then told me to go home and come back if it hurt. This took about 6 hours of my life for pretty much nothing so when this doctor says I need to see a specialist, I tend to take it with a grain of salt.
I had the report sent to my midwife who wouldn't send me out unless it was pretty bad. When she got a look at it she said the same thing so then I finally started worrying. I called Maternal-Fetal medicine and after waiting on hold for 10 minutes, explaining the legality behind midwifery (no, she really doesn't have to have a back-up physician and no, I'm not being treated by an ob/gyn at all) and generally who the hell I was they finally set an appointment for Monday.
We waited all weekend for that appointment. I tried to be upbeat, I went about my normal routine and took care of my kids. I didn't wash a dish or clean anything so my house looked pretty terrible but that's not that far out of the ordinary. Saturday night I took a shower and prayed that God would take this weight that was resting on me and lift it. I felt in that moment that He did. I went through the next day at church with a smile on my face and a grain of confidence in my heart that everything was going to be ok and God was going to work this out. On Monday morning as I dressed for my appointment, in what I thought was the ultimate act of faith, I put mascara on. Not the waterproof mascara that gives you just a hint of definition but the va-va-va-voom, sex kitten eyes mascara that I wear when I want to look really good. Like I said, it was an act of faith. God was going to take care of this, I wasn't going to have to cry.
Faith and hubris can appear erily similar or so it seems to me now because after an in-depth ultrasound on a much fancier machine and a VERY long consultation between the doctor and everyone else in the practice they finally called us back and told us that our baby was not going to make it. The diagnosis was holoprosencephely which means that part of the baby's brain just never developed. In our case it's both frontal lobes that never materialized. Enough of the brain is missing that it is extremely unlikely that the baby would make it to full term and completley impossible for it to do things like breathe on it's own, see, speak, remember, suckle or live. What we have is incompatible with life.
The doctor thinks this may be caused by a chromosomal abnormality called Trisomy 13 which means it is unlikely that we could do anything about preventing it and that it's unlikely to occur again. We're waiting on some test results to find that out for sure.
So now the question is what do we do. Do we continue on for possibly 6 more months and have the baby stillborn or do we terminate the pregnancy now? The question is not one I ever thought about. Even when I was 24, unmarried, at the beginning of a career that was finally starting to go and found myself pregnant, I didn't consider "termination." I always felt that procedures like that should be reserved for situations where the mother's life is in danger. I always thought those people who terminated to avoid a child with mental disabilities were missing the point and taking the easy way out. I never really thought about those for whom life is not on the menu. We can either have death now, or we can have it later but death comes either way. Life is not one of the options we are being given.
Because of that fact we are now trying to decide when and how to end this pregnancy. An induction seems like the best way but I am not eligible for that for another 5 weeks. That's 5 weeks of postponing the inevitable and living in limbo. For an immediate solution, there's the D&C. This is the usual abortion procedure which involves dilating the cervix and using tools to scrape out it's contents. This is no judgment on anyone else who has had this procedure done before but for this baby, this very wanted and loved baby, it feels cruel. We don't know how much they understand or how much they can even feel at this age but I imagine that were I a little fetus bobbing around in the water and bouncing off the walls of my home, feeling that home slowly and steadily squeeze me out might be slightly less scary than to have the door forced open and a big metal tool drag me out. I know the result is the same either way but it doesn't feel that way to me.
As a mother it is impossible to choose the way my child will die. This is not a choice I ever thought I'd have to make. I can choose to carry this baby to term and give birth to a dead baby. I can choose to have an induced labor in 5 weeks and give birth to a very small dead baby or I can have an operation now and not give birth at all. None seems any better than the other. None of those choices seem any kinder to anyone than any other.
It has been one week since that first ultrasound, 5 days since I was able to go to bed without crying, 3 days since we got our diagnosis, a day and a half since we tried to resume our current parenting obligations and it will be at least another week before I have to cook for myself because so many sweet friends have understood and sympathize and do so with dinner. We are lost in a sea of sadness just now and I just pray that God will answer this prayer and take the choice from me. This isn't a decision I want to make, I don't want to know the moment my child dies and know that it was my decision that caused it. Take this one away, it's too big for me.

Spin off blog, or perhaps not

I've been thinking on an idea lately (the past 6 months really) and would like to know what you my readers (reader) think about it.
I sortof spun the idea off of Ina May Gaskins Birth stories as told in Spiritual Midwifery and Ina May's Guide to Childbirth (which everyone who ever plans to have a baby should read). The birth stories are usually told by the woman having the birth with supplemental information given by the midwife who attended the birth. I found them extremely helpful when I was in labor with the Tyke. I felt like I had this bank of ideas for coping with the intensity of birth and I could pull out any of them I liked and try it for a while.
My idea is to create something like this but for after your children are out and driving you crazy. I'd like to start a blog where mothers could tell their stories and share the challenges that have faced them while raising their children. I think it could be helpful to new mothers to see what other mothers have tried and what has worked.
Personally, I think that's a story I'd want to read. There is no end to the multitude of ways there are to mother and I think it could be helpful to new moms and moms who are facing new challenges to know of other mothers who have faced these things and what they did about it.
So, assuming that you my readers (reader) would like to read that too, what would you like to ask other mothers? Do you want to know about potty training, discipline, sleep training, homeschooling, regular school, nutrition, puberty, teen years, college applications? What is it that you would most like to learn about and ask other mothers? You tell me, and I'll go find the answers.

I don't think so...

I just had my meeting with the hospital midwives. I went in with an open (ish) mind and as I stated earlier, the financially responsible part of me really hoped I liked them.
But I didn't.
There were several things that they do simply to maintain privilages at the hospital where they do births and to keep the Ob/Gyn's in their practice happy that are just not compatible with a healthy and happy birth for me. Here are the deal breakers:

1. They induce at 41 weeks. Not only is this one not backed up by any evidence that it gives you healthier babies and mommies, the opposite is often true because a pitocin induction is no picnic and is associated with higher rates of c-sections and epidurals which both come with their own set of side effects. Pitocin is not much fun either because it can lead to hyper-stimulation of the uterus and more cases of fetal distress than if mothers were left the hell alone and allowed to labor as nature saw fit.
2. They insist on an IV line. Anyone else here feel like going through a though mental and physical ordeal that requires every inch of your concentration and stamina with a needle stuck in your arm? Yeah, me neither.
3. They routinely give pitocin after birth. They do this to get the uterus to contract back down to it's previous size (or close to it) and it can be helpful with warding off things like postpartum hemorrhage but there are several other ways of doing those things without giving you this powerful drug that can produce very painful contractions while you're trying to bond with your newborn. Breastfeeding can also have the same affects (clamping down the uterus and preventing hemorrhage but they don't trust that one.

Dilbert was saying that we could still go with them and just hope that I'm not GBS positive and lie about when the LMP was so that I could go to 42 weeks but they wouldn't know it. That may work for some but I don't want to have someone I don't trust in the room while I'm trying to birth a baby. That was the great thing with the last birth, everyone who was there was trusted by me so I wasn't self conscience or awkward.

Waiting for Oscar

Dilbert and I are currently trying to have another baby. We both feel we are ready (as ready as you ever are for these things) for another one and can't wait to have another child. But we are both dreading all the stuff that comes in between.
I'm not really talking pregnancy. I'm not one of those people that really enjoys being pregnant and it is kindof a pain but I'm ready to tackle that one. I'm not even talking about birth. I'm actually looking forward to birth because I enjoy the challenge and the competition with myself to climb that mountain. The stuff I'm dreading is the insurance battle or the big pay out.
It seems that if you've done a lot of research and decided that you want a natural birth and decided that the best place to attain said natural birth is in your own home with a qualified individual there to oversee the process you bring upon yourself a massive fight with insurance companies.
I don't know why this happens and I have heard tales that some happy people have beautiful insurance companies who simply pay for home births as well as ones in the hospital but none of the insurance companies that are an option for us will do that. In fact they specifically say in their statement of coverage that most home births are not covered. This makes no sense to me for the simple fact that a home birth midwife is about 1/3 the price of an uncomplicated hospital delivery. It would be in their best interest to cover them but they don't and I don't understand why.
And so, I have an appointment tomorrow with a group of midwives who do hospital births and the financially responsible side of me hopes that I love them while the more emotional/hormonal side of me hopes I hate them so we can justify making the sacrifices to pay for another home birth. I just hate that money comes into this decision so much but in the meantime, I look forward to meeting Oscar.

Homeschooling from a newbie perspective

I started homeschooling the Pudding the first week of September. Dilbert and I had been thinking about this for a very long time and decided that this year is our trial year. We had several reasons for doing this and here they are:

1. Neither of us had particularly great experiences in public schools. Dilbert liked high school but not for academic reasons. I didn't really like any of it and was labeled "learning-disabled" early on which I think could be more accurately called "learning differently."
2. Both of us had a few great teachers, but they stuck out like stars in a sea of darkness. We didn't want to trust our children's education to people who might just be the lights of an airplane.
3. We are both very conservative and don't really like the idea of our kids education being a matter of labor union policy and political debate.
4. We think we can do a better job at home.

Those were are reasons for starting this little journey. Having done it for all of three weeks now I can add a 5th reason: It's totally fun.
I'm sure there are super moms out there who are constantly planning activities for their little ones, making sure they experience the full spectrum of what their world has to offer. Occasionally I've branched into super-momhood but usually it's just getting through the day. However, now that Pudding's education is in my hands, I'm finding all kinds of things that I thought about doing before can now be classified as "educational" or "field trip" or "learning experience" and woven in with what we are doing at home.
For example, this week we've been reading about the ponies at Assateague island. We've found several reference books in the library on this subject and Pudding eats them up. So we read about ponies for about an hour every day (that's a lot of ponies). Then in Math we just did a color by number picture of a pony that got Pudding to focus on differentiating between the different numbers. Then we went to Frying Pan Park and saw all the animals but spent most of our time with Jesse and Michael the old Percheron horses. They are as gentle as kittens but still big enough to make quite an impression on Pudding. We talked about how old horses can get and what horses used to be used for and why people needed big strong horses like Jesse and Michael and what sort of work they did. Then we talked about how horses bodies worked (they have multiple stomachs) and what they ate and why. So there we had reading, geography, math, history, agriculture and science all out of one topic. Best of all, I didn't have to cajole or beg her to pay attention to any of it because it's what she's into right now. I couldn't teach like that if I had even 10 or 15 other kids to look after much less another 20 or 30 as some Kindergarten rooms do.
Then this afternoon we went over to a very wooded park to pick leaves which we will identify in the morning when we do some science. Maybe then we'll count all the maple leaves or draw letters on them or I'll teach her how to press them so that they are preserved. The possibilities are endless and it's exciting to have this much room for creativity. I'm a little ashamed of myself for not taking advantage of it sooner.
I'm sure there will be ups and downs on this process but so far so good. I'm just enjoying the ride.