Spoke with the Neurologist

So I'm just going to do a quick update on Jack here. There is more to tell, like about his yearly scans. And the fact that no one listens to parents. And ECI and how we now have a $500 bill for the evaluation that finally convinced them that HELLO, he's falling behind. Which I have been saying for 9 months now. But they don't listen to parents. Even parents with degrees in Early Childhood Education. But again, that is another story.

Jack had an EEG about a month ago. He didn't have any seizures while he was hooked up (it was a 24 hour EEG where we brought him home) but we figured the doc could still get some info from it.

When I spoke with him, he said that Jack is having a lot of discharges in his right frontal lobe, which is where the seizures are coming from. Discharges aren't actual seizures, they are small abnormalities in a localized area, whereas seizures affect the whole brain. The discharges are quick too and seizures last a lot longer.

Anyways, he says that the discharges being in one area is good and an improvement. Previously they have been is a few areas. Basically, he thinks that this means that Jack is a much stronger surgery candidate at this point.

We have to go to Houston on July 1st for a MEG scan (and come up with $1500 to get it done). The scan should tell us how deep within the brain tissue the seizures are coming from. If they are just on the surface that area can easily be removed, if it is from further down it is less likely they can remove it. And yes, we are back to talking about cutting out a part of my child's brain (which makes me want to vomit). But the doc is pretty sure that keto isn't going to be his miracle, even though it has helped tremendously. He is still having about 5 seizures a week and he is falling behind developmentally which means the seizures are taking their tole. We have to do what we can to get them stopped and this is the next (and last) option.

Please say prayers for him.

I'm done being fat

See, I told you that I had a lot of posts brewing in my head!

It is really depressing to wake up every day and have to put on maternity clothes (when I haven't been pregnant for more than 2 months) because nothing else fits. 13 weeks of pregnancy really changed my body, and it sucks, and it's not going away. I refuse to buy fat clothes, it's just a waste of money. At least maternity clothes are comfortable.

But yesterday I ripped my favorite pair of pants and I wanted to cry. A friend stitched them up, but it still sucks. My other favorite pair got ripped too, but the crotch basically blew out on me. Thank God I was home when that happened. Always wear underwear people!

So anyways, I decided that I'm done being fat and that desperate times call for desperate measures.

Two weeks from today we leave on the house boat trip on Lake Travis. I am determined to fit into my swim suit from last year and not have to wear a maternity suit on the boat. I really like the one from last year and thankfully the maternity one is getting too big over the last few weeks.

I've been doing a low carb diet now for about 2.5 weeks and I've lost 8 lbs. If I can lose another 8 by the time we hit the lake, I will be a happy camper. I won't diet much while we're on the boat, but I will get right back to it when we come home.

Back at the beginning of the year both Jonathan and I really cleaned up our diet. We went lower carb than we had been doing and started meal planning again. It makes a HUGE difference if we have a plan of attack. But shortly after that I found out I was pregnant and even though we continued with that, I still gained a little weight. Not much, only about 7 lbs total in the 13 weeks, but the shape of my body was, and still is, completely different. I'm at the weight I was before getting pregnant and none of my shorts or pants fit. Even the massage therapist that I see at the chiropractors office mentioned that he thinks my hips haven't gone back to where they should be, like my body hasn't completely gotten the message that I'm not pregnant anymore.

Anyways, at some point I realized that I only had about 6 weeks before the boat trip and immediately cut out everything but protein, veggies, only berries as fruit and coffee. A few day after I did that I went full out and even cut out the higher carb veggies.

I was surprised that the transition wasn't difficult, I think because we had cleaned up our diet so much already, I was just tired of not actually losing any weight, even while I was eating well.

So there you have it. My goal is to lose 50 lbs. A lot of the health problem I've been having (ie: back pain and knee pain) I think will drastically improve with the weight loss. I still haven't been able to exercise because of those thing, but I'm hoping to at least be able to do some wii fit during nap time in the next few days.

I'll keep you posted on how thing are going and might even include a recipe or two on occasion.

I hate this stupid weekend

Let's just get this out of the way first. I'm not at all complaining about the service people who have served or died for our country. They should be honored. End of story.

Growing up, this weekend was ALWAYS spent at the lake. For the first 29 years of my life. I was 3 months old the first time they took me camping. We have tons of stories, mostly about toughing out a rain storm on the weekend, because I remember one that it didn't rain on us. ONE in 29 years.

Missing this weekend was like missing Christmas. It was as big a deal as Christmas and it was one of those thing that we just knew what we were doing that weekend. Actually, all 3 holiday weekends over the summer. Memorial day was the kick off to summer and the boating season. 4th of July is just another good excuse to all get together and go camping, and Labor day was one last bang. And we were at Lake Travis every one of those weekends of my life.

Now, since my parents are divorced, it's all gone. And it's so depressing. The first one after the separation was when Jack was tiny and I cried all weekend. We vowed that we would go do something and start our own tradition. I don't want to join in whatever little gathering someone is having, I want to start a new tradition. I wish there was camping on Lake Travis, but there are so few places to do it now. Not to mention having a boat makes the whole thing much better.

Last year we went to the coast with my dad and his girlfriend and my brother and his family, which was good, but it was when we discovered that Jack has seizures while traveling and we all didn't sleep well and the mosquitoes were the most awful things ever. It was rough. We were thinking it would be a good new tradition, but we can't travel with Jack much right now. Which leave me sitting here on the couch all alone with Jonathan in the Phillipeans. We did at least have plans to go on the boat tomorrow afternoon, but my mom canceled. So yeah, I hate this stupid weekend.

Maybe I shouldn't complain. I have a roof over my head, food to eat, and a beautiful boy. And I am grateful for all of those things. But you know, the last few months have really sucked, my body still isn't cooperating with me, and I'm just sick of it. I think I need to open a bottle of wine.

A Love Story

I came up with a few titles for this post, most were funny about boobs, but I think this is more appropriate. Because everything I've put my boobs through for this kid, is out of nothing less than love.

So lets do a "quick" re-cap.

• At birth I was more concerned about breast feeding than I was about labor and delivery. I knew that I would not be leaving that hospital still pregnant, but there was no guarantee that I would be nursing him. I did leave that hospital still nursing, but I also left it with a lot of cracking and bleeding. That wasn't nice! It was super painful but I powered through and after about 2 weeks they healed up.
• It took months for nursing to not be painful. I'm guessing because Jack is tongue tied, but I will never really know.
• Then we had the pull off and scream phase. You can read the full story here. But basically we never found an answer to why he would seem to be feeding fine and then 5 min in pull off and start screaming. Both of us were in tears on a very regular basis.

awwwww, look how tiny and sweet my milk baby was.

So let me stop there for just a moment and talk about my stubbornness. When I was in 8th grade I was in the 2nd band. I loved the director and had a great experience and was really looking forward to high school band. As I was preparing for the audition to see what band they would put me in, I was told by my director that I would make the 2nd band in high school. There were 3. For some reason, I was offended by that and dug my heals in and insisted that I would make the top band. Well, I was one of 3 from middle school who made the top band out of at least 50. So yeah, I've always had a stubborn streak a mile long. When I put my mind to things, I make them happen, and breast feeding was one of those things I put my mind too.

• After the screaming thing finally subsided, after talking to 3 different lactation consultants who were all no help and it took several months, was when Jack was put on steroids. He nursed every 2 hours around the clock for about 10 weeks. I had a mattress on the floor of his room and we slept there most of the night together. He wouldn't sleep in our bed with us because he thought it was playtime when he was in there. It was brutal. Of course he did that as a newborn, but only for the first 3 weeks and Jonathan was home the whole time with me so that I could nap during the day. But on the steroids he wasn't napping well at all because of the drugs and we were also trapped in the house because they weakened his immune system. It was brutal, but we got through it.
• After he finally slowed down and started solid food around the same time, I had a lot of issues. I stopped counting at 15 clogged ducts. They are extremely painful! After the first few though, I got really good at getting rid of those suckers. I could have one gone within 24 hours. Now nursing while you have one of those is like walking on a broken leg. I also got mastitis twice. I pumped a lot to try to prevent the clogs, but even pumping 3x a day wasn't enough. And pumping is not fun! Especially when you have an infant to take care of.
• So when he was about 9 months old he started getting really distracted while nursing. It's a very normal thing but he would only nurse if we were in the chair in his room. I finally decided, for both our sakes, to put him on a nursing schedule. Up to that point it was simply whenever he wanted, but he was getting to the point that he would act like he wanted it but then only nurse until letdown. Plus I had hopes that a nursing schedule would help with the clogged ducts. I think eventually it did, it just took a very long time.
• This is when nursing got good. It was easy, predictable, didn't hurt (accept with I had a clog) and it was time for my baby and I to snuggle and connect. Not that we didn't have that before, but it was much easier for me to enjoy it without all the issues.
• We had 5 good months because at 14 months we had to wean him for the ketogenic diet. I didn't want to, and I almost didn't start him on the diet because of it, but our compromise was that I could still give him breast milk but it had to be weighed out and mixed with heavy whipping cream.
• So I began to pump again. The weaning was super tough. More on me than him I think because to hear your baby scream bloody murder in the middle of the night and know that you can fix it in a heart beat but not go in was awful. With every feeding we cut out, I pumped and froze milk. He was nursing 3x a day so that is how many I was pumping and I did that until I simply wasn't getting much at the nap time pumping. Then I continued to pump in the morning and evening until I was only getting drops.

My one regret in the whole thing was how we weaned and weaning so early. While 14 months may seem late to some, in the big picture it's quite early. The world wide average age for weaning is 4 years. Yes, you read that right, 4 years old. While I certainly don't want to nurse a 4 year old, I would still nurse Jack in the morning and evening if he could nurse. (Don't ask me why this paragraph is smaller. I tried to edit it but it won't change. Whatever. The last one is like this too, it has no significance to what is written!)

There is all kinds of research proving that nursing beyond a year is a very healthy thing. There is research that suggests that children that are breast fed longer results in bigger brains, here. And here is a list of a few benefits that I found at www.kellymom.com
- The American Academy of Family Physicians notes that children weaned before two years of age are at increased risk of illness (AAFP 2001).
- Nursing toddlers between the ages of 16 and 30 months have been found to have fewer illnesses and illnesses of shorter duration than their non-nursing peers (Gulick 1986).
- Per the World Health Organization, "a modest increase in breastfeeding rates could prevent up to 10% of all deaths of children under five: Breastfeeding plays an essential and sometimes underestimated role in the treatment and prevention of childhood illness." [emphasis added]

Now, I am not at all knocking people who stop breastfeeding before the child is 2. I'm not even knocking people who stop breastfeeding super early. Even if babies only nurse for the first week, they get colostrum which is a huge help to the immune system and can help them for up to 6 months! I worked for a mom who came home at lunch to nurse her baby, pumped at work, and had to start substituting formula at about 6 months. She felt bad about it, but 6 months even is great. Pumping is hard, I did it A LOT!!! But it's wonderful to be able to provide your baby with milk, even if you can't be there. It's a huge gift. One they will likely never really appreciate too.

Breastfeeding, much like any parenting decision, is something that has to be worked out within the family. And the opinion of anyone living outside that household should have nothing to do with it, much like most parenting decisions. And I found that a lot of people had some very strong opinions about my boobs in relation to my baby and thought that it was gross or inappropriate or whatever that I was nursing a 14 months. When he was only 9 months people started asking me when we were going to wean and honestly I was a bit stunned by that. So I'm going to say it now, if and whenever I have another, I am letting him or her self wean! There, now there is no need to ask when I'm weaning. Jack cut back on his own and I'm sure would have self weaned or be very close to it by about now. All of the articles and studies say to go as long as it works for both mother and child.

- The American Academy of Pediatrics recommends that "Breastfeeding should be continued for at least the first year of life and beyond for as long as mutually desired by mother and child... Increased duration of breastfeeding confers significant health and developmental benefits for the child and the mother... There is no upper limit to the duration of breastfeeding and no evidence of psychologic or developmental harm from breastfeeding into the third year of life or longer." (AAP 2005)

There is no harm to the child, and it actually has developmental benefits.

And here is one more article about the benefits.

Ok, enough about the benefits, lets get back to the story.

• After the weaning and the pumping I had saved enough milk for 7 months. Woo Hoo! That's a lot of milk, I think somewhere between 500-600 ounces.
• Then came the weighing and mixing, the calculating and finding a cup that he could get every drop, or as close to it as possible, out of without spilling it everywhere.

Now he has finished all the milk and is off it completely. It's bitter sweet to me because I'm so proud of myself for sticking to it in the beginning, for pumping as much as I did and making it last so long, and at the same time it's like the end of his babyhood. A few weeks ago I started leaking milk (just another crappy reminder that I was pregnant and am not anymore) and I thought about pulling out the pump to see if I could get anything for him. I didn't, just because I probably wouldn't have gotten enough to amount to anything and I didn’t need another constant reminder of the baby I lost, but it was tempting.

So, a chapter is closed. Overall, I feel good about it. I know that I haven’t posted in a while, I’ve got several posts brewing in my head so hopefully I’ll be able to get them out soon. Jonathan is currently in the Phillipeans for work so Jack and I are batchin’ it. I have a friend who has been a huge help so that I can at least go to the farmers market and get Jack’s food done. My next post will hopefully be about ECI(early childhood intervention) and the neuropsychologist that we saw.

the cute things toddlers do

Jack is a pretty animated little dude. He tries to comfort people if they are upset and he likes to make people laugh. He also likes to give hugs and kisses, when he's in the mood that is.

Yesterday, Jonathan got home and Jack went to hug him. Jonathan picked him up and was saying hi to him when I came up to give him a kiss. I kissed Jack and then Jonathan. Jack then puts one of his hands on my head and one on Jonathan's and pushes our faces together and makes kissing noises. It was priceless. He repeated the process several times.

Totally melted our hearts!

What we wish you knew about pregancy loss

I found this on-line, and most of it is so true for me and everything I've gone through in the last month. I can't believe it's been a month already because it feels like it just happened a few days ago. My body still hasn't recovered physically even though the doctor said it would only be 1-2 days. That was crap.

Anyways, here is the letter I found and I'll add a few comments here and there. (The letter is in blue, my notes are in black.) While some of this doesn't apply to me or the things I have encountered, it's remarkable how much of it does.

What we wish you knew about pregnancy loss:
A letter from women to their friends and family
by Elizabeth Soutter Schwarzer
I assert no copyright for the material. Please use it as you see fit to help women who have endured this terrible grief. Thank you.

Date: Sat, 23 Mar 2002
When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.
When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don't say, "It's God's Will."
Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

This may be the one that bothers me the most. Because believe me, after going through this, I have several questions I'll be asking God when I meet him. Like why did I even have to know I was pregnant? We weren't trying, I had awful cramps and though I was starting my period, why not just end it then if it was going to end? Why did we have to see that little heart beat? If it was going to end, why let us get attached and know that after seeing the heart beat the risk of miscarriage goes down to less that 5%? WTF? And why did I have to carry the baby all the way to the end of my 1st trimester? Why did I have to have the horrible pregnancy symptoms with a dead baby for over a MONTH? How is that fair? So yeah, when people say that it's "God's will" or in his "plan", it makes me want to hit them. Screw whatever plan there is. I just want my baby back.

-Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

I have a child with special needs. I KNOW what it's like. I live it every day and I am thankful for my special needs child every day. And while I have no idea how I'd handle 2 with special needs, that doesn't mean I would have loved her any less or sent her back or wanted her any less.

-Don't say, "You can always have another one."
This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

First, it's not really anyone's business if we are having sex to have a baby, having sex just for the fun of it, or not having sex at all. I've always found asking about other people's sex lives a bit weird. If people want to talk about sex, I have no problem with that, but asking about other peoples sex lives can be weird. And the truth is, I don't know if I can just "have another". No one really does. But I have had very similar issues that my mom had and it took her three years to get pregnant with me when she was 26. I'm about to be 32. No, we don't know if we can just have another. Thankfully, people haven't actually said this to my face. It is a concern in the back of my mind though. And we aren't trying for another anytime soon. I hesitate to wait too long because of our age and because of the problems I've had (endometrosis and fibroids and cysts) but I also need time to grieve the loss of my baby and to get my body back into physical shape so that I can have an easier time supporting a pregnancy.

-Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

This one has been said to me. And how does being sad about loosing a baby make me ungrateful for my beautiful son? If you know me or have read this blog then you know how grateful I am for Jack. It has nothing to do with not being grateful for him, it's about being sad for the baby that I lost.

-Don't say, "Thank God you lost the baby early and before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

Thankfully no one has said this to me, but if they did they would get an ear full. My baby had a heart beat, she was alive. I saw her living in me, felt all of the pregnancy symptoms in the book, puked almost every day. Believe me, you don't do that for someone you don't love!

-Don't say, "Isn't it time you got over this and moved on." It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

This one doesn't bother me much. I have been amazed at how many people have been through this. It doesn't make it any easier, but at least I know that I'm not alone in it.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

My neighbor did this, and it didn't help. I think it was with the intent of telling me that I was lucky that I lost the baby early and not at 7 months. And sure, I'm glad that I was able to have a D&C instead of go through labor and delivery. Had it been only a few more weeks I would have because I was right at the cut off. However, it doesn't mean that I am any less sad or that loosing the baby in the 1st trimester is any easier.

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

There have been very few people that I've actually wanted to talk to about it. I still feel somewhat like hibernating in my house but I am starting to be more social, mostly because I know that I need to and I have a 2 year old to entertain. So if I don't bring it up, please don't either. (at least for the next few months) I will most likely just shut down and not say anything. There are a very few people who can bring it up, and they know who they are. Also, I don't want to be hugged for 5 minutes or asked how I am every 3 seconds. I've been giving generic short answers. I don't want to have to comfort you or reassure you in my time of grief. If I do bring it up then yes, please don't ignore it, but I'd rather you ignore it than hound me about it.

- Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring her safely into the world and I couldn't do it. I was supposed to care for her for a lifetime, but I couldn't even give her a childhood. I am so angry at my body you just can't imagine.

Again, no one has said this one, but it is true. I know logically that it wasn't my fault, but that doesn't mean that I don't feel somewhat responsible for the child that was inside me.

-Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

This is another that hasn't happened, but if it does I will have some BIG words, that my child shouldn't hear, to say. Unplanned doesn't mean unwanted or unloved. We changed all of our plans for this baby and we can't change them back. It sucks.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

-Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

I could not believe the outpouring of text messages, emails, and phone call that I got in those first few days and still people asking how I'm doing. It's been amazing and overwhelming. I didn't respond to any of it at first, I just couldn't. I had Jonathan answer the phone for the 1st week even. Just know that I do appreciate it and don't take it personally that I didn't respond because I didn't respond to anyone.

-Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.

If you're my boss or my co-worker:
-Do recognize that I have suffered a death in my family - not a medical condition.

-Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

-DO understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come.

Please don't bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while."

It has been really hard to see my pregnant friends post updates on facebook. And to see cute tiny baby pictures too. It's not that I'm not happy for those people, it's just that it's a reminder of what I could have had. What I would have had. And it's really had for me to hear people complain about being pregnant. I know that it's hard, I'm not the biggest fan of pregnancy, but I would give just about anything to still be pregnant.

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

I shouldn't have made that last post

Of course right after I made that last post bragging about how great Jack has been sleeping, he's been up at 5:00 am for the last 3 days. And last night we had to go in twice.

Crap.