Sleeping-Or Trying To

January  10, 2011

In my support group, people are worried about having “rainbow babies” (babies born after losing one to SIDS) and something happening to THEM. Well, we haven’t even made it that far.

Sam has always been a bad sleeper. It’s not something that I ordinarily talk with about to people because the advice I get is unhelpful and sometimes borders on stupid, but he’s always had problem sleeping. For about two years we thought that it was sleep apnea because he snored really loudly, woke u a lot, and seemed to grasp for air on occasion. However, now the problem seems to have taken a different turn.

I swear he stops breathing when he sleeps.

He gets so still, so cold, and so stiff that he has almost given us a heart attack on several occasions. I have felt for his pulse, his heartbeat, and breath on many occasions and either not found it, or been so scared that I couldn’t actually find it, even though it was there. I’ve had to pound him on the back several times to get a sign of life out of him. Pete has done the same.

This was all before Toby died so you can imagine how this affects us now.

Lately, Sam has been getting up in the middle of the night and getting in bed with us and throughout the night one of us is always waking up and checking on him, making sure that he is okay. We all seem to sleep easier when we are in bed together.

This morning, Pete had his first day of classes so he set his alarm. I remember hearing the alarm go off but the next thing I heard was a very unnatural scream coming from Pete. When I opened my eyes, he was holding Sam, rocking him back and forth, going, “Wake up, Sam, wake up!” I was close enough to Sam’s face that I heard a gasp of air and saw his eyes open before Pete did. I kept trying to tell Pete that he was okay but it took several minutes for all of us to calm down.

Yes, welcome to our life. Where we wake up every morning, just assuming that one of us is going to be dead. I have woken up several times with Pete’s fingers on my neck or chest, listening for a pulse or heartbeat.

Pete said that when he woke up, Sam was face down in the bed, still and cold, and had a greenish tint to his skin. I also woke up with Sam like that two days ago. Going to call the doctor tomorrow and try to get him in for a sleep study. I don’t know that it’s sleep apnea since he is no longer snoring like he was, but it’s better than not doing anything at all. It might at least help US sleep better if nothing else.

So yeah, how in the world will we sleep with a baby back in the house? Well, we won’t. Seriously, we won’t. We’ll break it up into shifts. That’s actually what we were doing with Toby anyway, and we did the same thing with Sam. This time around, we might make a chart or something. I would really like to hire a nanny when the baby gets here but since we don’t know exactly when he’s coming it will probably be a week or two before we’re able to get one in. I also plan to keep this one home with me for the first year and not send him to daycare. I am NOT a stay at home mom, but for me it’s the lesser of the two evils. I couldn’t imagine SIDS happening at daycare, like it does sometimes.

I still have to work fulltime, but hopefully we’ll be able to figure out a schedule and since my office is at home it shouldn’t be too hard to come up with a plan.

Happy New Year!

January 1, 2011

So this year ended on a pretty typical note-with me in the hospital for a week. When I went to the emergency room (pregnant women have their own triage in the Labor and Delivery ward so I didn’t have to go to the usual ER) I was told that I would probably only be there for a few hours. Well, I was there for an entire week.

On the plus side, the people were very, very nice. Even though it’s one of the biggest hospitals in the state, the nurses all remembered me and Toby so that was nice.

I really wanted to be home after the first day, but honestly I was so out of it by then that I barely even remember the first few days.

So I have something called hyperemesis. It only affects 2% of every pregnant women and it’s really, really dangerous. I’ve had it with all 3 pregnancies and nobody knows why it happens to some people and not others. Actually, I’m only partially sure that I had it with Sam. I was living in England at the time and the doctors kept telling me to “just eat some ginger.” After losing 20 pounds, Mom flew me back to the US where the doctors here got me under control in less than a week.

So how does this differ from “normal” morning sickness? Well, your blood pressure gets dangerously low, you get so weak that you can’t even brush your hair or get dressed, and you vomit at least 10 times per day. You also lose around 10% of your body weight. With mine, I hallucinate and get confused and disoriented.

On Christmas Eve, for example, I was so certain that I heard Toby crying that I almost called down to Pete to check on him. I did not even remember that he was gone. I went to the doctor on Thursday and then back on Monday and in that timeframe had lost 4 pounds. So far, I’ve lost 17. They pumped 15 liters of fluids into me over the course of the week because I was so dehydrated and it was still a couple of days before I could pee.

They were talking about hooking me up to a catheter and having a home health nurse come out a few times a week to administer meds to me but we decided instead to have me return to the hospital once a week to get hooked up to the IV and get meds and fluids that way.

It really is a mess.

Being back in the hospital was interesting. I was in the same part that I was in when I had Toby but it didn’t make me feel sad. It actually made me feel a little closer to him. I was a little disappointed that aside from Melissa and Hailey, I didn’t have any visitors. Oh, our friend Amy came in. Her son is 6 and was having his chemotherapy on the floor below us. She and her husband have to spend the night in the hospital, too. But I figured being there a week I might have people drop by. It gets really lonely and boring to be bound to your bed for that long.

I did have a panic attack last night when I realized that Toby and I will never be in the same year again. He will always belong to 2010 while I have moved on to 2011. That made me sad.

Our Christmas was nice. I got Mom and Pete flat screen TVs and some other stuff. Pete refurbished an antique dresser for me. It’s really pretty. I spent a lot of time sleeping, though.

Before Christmas we went to Toby’s grave and decorated it. We put poinsettias, wreaths, and other flowers on it. There were about 6 inches of snow covering the grave and it took me and Sam forever to dig through it to find the actual site, but it did look pretty.

It has snowed almost non-stop here for weeks. Good thing none of us are afraid to drive in the snow or else we would never get out to go anywhere.

We are really struggling as to what to do with Toby’s bedroom. I took one of his blankest, his pacifier, and little socks and made a shadow box with them. I’m thinking of getting a huge shadowbox and putting the blanket from his crib in it, a few things from his mobile, the outfit he wore home, and maybe some sea shells in it. (His room had a nautical theme.) At some point we’re going to have to take everything out of there because we’re going to Babies R Us and buying a whole new nursery set for this one. But it’s going to be really hard to get rid of his room. I’ve boxed up all of the clothes that he wore but I still have a closet full and dresser full of things that he didn’t. If this baby is a boy then I will pass them on. If it’s not, then I might just box them up and store them. I’m not going to send them to consignment or give them away.

Pete’s had a rough time lately. We seem to go for weeks without having any kind of Toby-related anxiety and then it just hits all at once. I have no idea what we will do when this baby gets here. I am going to hire someone to come in for about 7 hours a day and watch him/her so that I can sleep. I’ll do my work at night. I don’t know how any of us will sleep in a house with a baby in it again.

I’ve been studying the different SIDS theories and one of them (the biggest one) is that the baby lacks enough serotonin. So how do you get that to him? It is created in the first trimester. Smoking and drinking can lower your levels. Since I don’t smoke and I don’t drink when I’m pregnant, this doesn’t apply to me. But there might be other things that they don’t know about.

We are going to buy an Angel monitor that attaches to the bed and goes off if the baby stops breathing. That might give us some peace of mind, although it’s still true that SIDS is not 100% preventable.

Mom has decided to get a hotel room in Lexington when I go into labor so that they can stay close to me. We’ll probably do the Hyatt again. It’s very close to UK and it’s a nice hotel. This week, it was tough on Mom and Pete to keep driving back and forth because it’s about 1.5 hours away and gas is expensive. For the last 2 days, Pete just stayed with me and didn’t go home. The chair in my room made a bed and he said it wasn’t too bad to sleep on.

Because of the hyperemesis I haven’t been able to take any prenatal vitamins but I started on some Flintstone chewables today and they’re pretty good. They taste like gummy bears.

We are now planning our big vacation in March. We don’t know where we’re going yet, but we have a few ideas. I think we all need a break here.

Tough Week

December 12, 2010

Sam and I had a conversation about Toby the other day. He asked me if we were going to put presents under Toby’s tree and I said no. When he asked me why I said it was because Toby was gone and we couldn’t get him any presents. Sam then said, “That makes me and you sad.” I said that it did and then told him that we could put flowers on his grave. Sam goes, “But that won’t make me happy. How about we give him some cars? But not my cars. Different cars.’

I have been really sick lately. They told me I had gallstones, but tonight I had to go to the ER and they did another ultrasound and said I didn’t have any. They looked really triumphant about it, but it pissed me off. I’m vomiting non-stop, haven’t kept any food or drink down in days, and am in excruciating pain.  If it’s not gallstones then what the hell is it? I went from having pain every once in awhile to every few days to every day, non-stop. It’s really frustrating.

I’m starving, too. When the thought of food isn’t making me nauseated all I can think about is eating.

I talked to a friend today on the way to the hospital and she said that if they admitted me she would bring me something nice to eat. They just gave me some fluids and Zofran through the IV and sent me home after doing a bunch of tests, but that food really sounded good. She then posted on her FB page to pray for me because I was feeling ill. Another friend wrote in and said that they had already been praying for me that day. That’s funny, since I haven’t heard from anyone since Melissa in a week. I don’t know about prayers, but a phone call would have been nice.

I shut down my FB page for the time being because it was adding to my stress. Well meaning people writing me, giving me lots of advice-a lot of it bad. Trying to play not only therapist but doctor to me. Making me talk about things that I didn’t want to talk about. Throwing their weight around like they know so much more about my health than I do, even though they never talk to me. It's weird to me when people come out of the woodwork and just start ordering me around and talking to me like I'm their project or something. It was getting ridiculous. They do it under the guise of caring about me, yet I never get asked to the movies, to dinner, to anything really and they never call just to chat. So to me it just feels like they’re trying to act like they know it all and show off their knowledge-which really isn’t any more than mine. It was just giving me a headache.

Sometimes I feel like people's project. There was a friend for awhile that acted very concerned, and did some helpful things, but later it almost felt like they were bragging to other people about all they had done for us. Plus, they were telling people that I didn't know about how suicidal I was and how badly I was doing and kind of patting themselves on the back for taking care of me and stuff and that made me feel weird. I know, I write about it here. But I choose how to say it and when. For someone else to do it makes me feel kind of icky.  I don't want to be someone's project. I don't hold up well over time.

On top of that, my cousin had a stillborn this week. She was almost full term and she had to carry the baby for a couple of days, knowing that he was gone, and then had to deliver him vaginally. It was really sad. His grandmother posted his picture on her FB page and apparently some people didn’t realize that he was dead in the picture and wrote in and said things like “congratulations.” It was really awful. He just looked like he was sleeping. That really got to me and I feel so bad for them. She had no idea that he was gone and earlier in the week was even talking about her baby shower.

On my cousin’s FB page, someone wrote in and said something like “God does everything for a reason, he’s testing your strength, seeing how you handle things like a man, etc.” He wrote back and basically told the person to take their God and their Bible and shove them. It wasn’t funny, but I almost laughed aloud. The person who wrote that to him really was just trying to help, but I totally understood his hostility. People say things that they think sound good, but really just come out clichéd and unhelpful. And I have NEVER liked the idea of “God” killing someone to test ME. I’ve wanted to shout at people, too, and in a way I use this blog to let out frustrations so it was kind of interesting to see someone just let it all out like that. But I felt very bad for him.

I read in something that parents that lose children are no longer naïve. That we know that bad things can happen and we can’t take for granted that good things are just always going to be. This is totally true. It might not sound like it from reading this, but I try to be positive when I can but since Toby died it’s been very difficult. People will say things to me like, “Oh, I prayed for you so I hope you get better soon!” And while I appreciate the sentiment, I also prayed during the entire ambulance ride and when we got to the hospital and bad things still happened. Or when I worry about a future pregnancy and someone says, “Everything will turn out fine!” Yeah, that’s what EVERYONE said to me last time, and NOTHING turned out fine. It really warps your sense of reality.

I was talking to a friend of mine that lost his partner over a year ago and he identified with a lot of my feelings. He said that most of his friends had abandoned him, too, and said things like, “Call me if you need anything” or “We should do something” and then never followed through. He said that put extra pressure on him because it made him ASK for something and he felt uncomfortable about doing that. He also said that he felt like they should have been reaching out to him and not the other way around.

We talked about the difference between losing someone to a long illness and losing someone suddenly like we did, too. In his case, his partner was older, but his death was very sudden. They were literally sitting there having a conversation and he turned his head away. When he turned back, he was gone. Heart attack.

I’ve read that even if you follow all the precautions, there’s no way to stop SIDS if it’s going to happen. That even if I had been right there at the moment I wouldn’t have been able to revive him. That his brain told his heart to stop beating and his lungs to stop breathing. Of course, I like to think that I could have done something anyway. I would have liked the chance to try to fight for him. If he had been sick, I would have taken him to every hospital in town and seen every doctor we had to help him. I would have liked to have had that opportunity. But I didn’t.

I joined an online SIDS support group and I talked to a lot of women there. One lost her baby the same day I lost Toby. They have a message board and one of the recent threads was called “Bite Me.” It was a way to vent regarding things that people had said to us or done to us. It was a lot of fun to read and I added my two cents, too. It’s kind of private, but I do remember one person writing in and saying, “To all those holiday ads featuring bouncy babies and toddlers-BITE ME. That should be MY house.” Venting with people who understand is very therapeutic.

November 2, 2010

So here it is, almost 4:00 am, and I can’t sleep. I couldn’t sleep last night, either, and ended up having to take something to knock me out at around this time which meant that I didn’t get up until after 2:00 pm. I guess the same thing will happen tomorrow…er…today.

I don’t know where this insomnia is coming from unless my sleeping pattern got screwed up by the stress of last week and the touch of the flu that I had. I hope it gets back on track soon, though, because with Sam leaving daycare I won’t be able to stay up all night anymore.

Last night I dreamt that I was dying. I had some kind of weird disease that was supposed to only affect animals but for some reason I got it and was dying from it. I was in the hospital and hooked up to IVs and my ex-boyfriend’s wife was there, trying to help me. That was the highlight of the dream. It was weird and scary.

Halloween was nice but a little rough. We took Sam trick-or-treating twice and both times I couldn’t help but think about the costumes that I had looked at for Toby and how he would have been with us. I saw lots of babies dressed up and it made me sad. He wasn’t alive for any holidays so I can’t associate any holiday memories with him, but his lack of appearance is almost just as bad.

There is a phenomenon going on with some of my friends that I am having difficulty understanding. I keep getting long e-mails or messages from people outlining to me how busy they are but how they will come and visit me once they are no longer as busy. Okay. It’s not that I don’t appreciate that, but they’re random messages and come out of the blue and it’s not even like they’re brushing me off since I didn’t initiate the conversation to begin with. I’m still getting people, too, that seem to think that they can only come over and visit or do things with me if they have a specific reason to-like bringing me brochures or books. I want to say, look, we can just hang out. You don’t have to come over with educational materials, but that feels rude. I think it’s a way of trying to be helpful, but it’s kind of weird to me. I appreciate those who are not trying to fix me and just let me drink.

Anyway.

Pete and I have both been feeling down the past couple of days. I think we’re still reeling from last week as well as recovering from Halloween. We did do a lot. For us, anyway. After this week we will more or less start the Christmas season and we’ll really be busy then. I hope we don’t crack.

I’m not feeling depressed necessarily, but I am feeling something that I can’t put my finger on. Some days it’s hard to get up the motivation to work and I know that I’m only doing it because we need the money and I pay the big bills. It occurred to me recently that I never really took any time off when Toby was born or when he died so maybe I’m just feeling run down. Not sleeping well, stress, anxiety, and everything else might just be messing with me and making me out of sorts.

Tonight on television there was a medical show where the examiner examined the body of an infant that died from SIDS. I shouldn’t have watched it, but of course I did. The autopsy bit was difficult but I couldn’t take my eyes away from it. Then I switched over to “Hoarders” and one of the women they were profiling had started hoarding after losing her infant to SIDS. It was a bad night for television.

Sitting with Sam on the couch, watching TV, a Pampers commercial came on and they played “Silent Night” while showing images of babies. We played that song at the funeral. I started crying and Sam goes, “Do you miss Baby Brother?” When I said that I did he patted me and said, “Well, he died. But we’ll have another Baby Brother. And he’ll be for you and for me.”

Tomorrow night there is a support group meeting in Lexington for people who have lost infants and we’re going to try to go and see how it goes.

Laura wrote a good blog entry a few days ago about changing herself and standing up for herself and others. it kind of goes along with some of my entries here and she mentions a comment that she left on my other blog. Check it out here... http://lotusholland.blogspot.com/2010/10/i-can-be-funny.html

Research

Research

So I’ve been doing quite a bit of research on SIDS and I have come up with some interesting information. By now, most new parents (and I guess parents in general) are aware of the precautions when it comes to keeping your baby safe. Depending on who you are talking to, the following precautions are advised:

• Do not co-sleep, but keep the baby in the room with you
• Do not use bumpers, soft blankets, pillows, or stuffed animals in the crib or cradle
• Use a fan to keep the room well ventilated
• Do not dress the baby too warmly
• Make sure the room is kept at an even temperature
• Use a pacifier
• Place the baby on his back when he is sleeping

Now that we know the precautions, what do they mean, exactly, and what do they really have to do with SIDS? Let’s break them down.

To begin with, nobody knows what SIDS is. While there are various theories out there, we’re still not sure what the hell it is. In fact, calling a baby’s death SIDS is basically saying that everything else has been ruled out and therefore they just don’t know. With that in mind, it makes the precautions even more curious.

You might have read, too, that the statistics of SIDS cases went down for awhile when the whole “Back to Sleep” campaign started but are now on the rise again. Why is this happening?

Well, there are a couple of theories.

Theory number 1 is that parents actually followed the precautions, thus reducing the number of SIDS related deaths. But then, parents got more paranoid and started sleeping with their babies, making the number rise again.

Theory number 2 is that the number of deaths never really went down at all. There has been some research conducted that has indicated that some coroners were actually putting “SIDS” on the death certificate when, in fact, it was accidental suffocation. It wasn’t that they weren’t doing their homework, it was just that they didn’t want to the parents to feel guilty for accidentally suffocating their child.

So, with that in mind, let’s take a look at the precautions again.

1. Do no co-sleep, but keep the baby in the room with you. This is pretty cut and dry. A lot of parents like to try sleep training right away and prefer to keep their baby in its own bedroom right from the start. I wasn’t one of those types of parents before and I certainly won’t be now. Sam slept in our room until he was a year old and if we have another one, at least one of us will sleep in the room with him or her until that age. I do not trust baby monitors. (Not for babies anyway although they are excellent at picking up conversations that your in-laws are having about you or for ghost hunting.)

The co-sleeping thing might not even be SIDS-related at all. The fear to this is that the parent will either unintentionally roll over on the child while they are sleeping and suffocate them or the child will get sideways and press up against the parent and be unable to breathe. This is referred to as “accidental asphyxiation.” Neither is SIDS.

When I slept with Sam during the night I always placed in him a baby travel bed which folds up nicely and can be taken everywhere. That way, he could still sleep in the bed with me, but he was actually in his own bed.

2. Ah, those hateful blankets and pillows and things. So, how do these pertain to SIDS? Here’s how this works…Sometimes, the baby can get trapped UNDER the blankets and stuffed animals and thus are unable to breathe. Again, this is NOT SIDS. This is suffocation. Other time, the soft blankets can get close and the baby can breathe in their own poisonous gases. Adults, children, and most infants are able to recognize this in their sleep and either move the blankets or turn their heads but for SIDS babies, there is some function in their bran that doesn’t alert them to this danger. In effect, they poison themselves with their own gasses.

3. The van thing is kind of similar. A well ventilated room will help keep the air moving around and thus help oxygen reach the baby. This actually goes hand-in-hand with the next one, which is keeping the baby warm but not hot. Most SIDS babies have had elevated temperatures. We don’t know what that means but keeping the room, and therefore the baby, at an even temperature is somehow helpful.

4. Use a pacifier. I have done a little bit of research on this and found a couple of different things about it. A pacifier will keep a baby from reaching deep sleep, when it is most likely to decease. However, the idea is to put the baby to sleep with the pacifier and to NOT reinsert it if it falls out during the night. As long as they are sucking on the pacifier you can be assured that things are working properly. I’m not sure why you’re not supposed to reinsert it. I haven’t gotten that far yet.

5. Sleep positioning. There are mixed reviews about this. Apparently, if you place the baby on its stomach while it sleeps then it has a better chance of breathing in the poisonous fumes that it is omitting. That’s always why it is recommended that you not place your baby on a soft surface, because the soft blankets can bunch up around him and trap the air. (And they can lead to suffocation.) Things change, though. For awhile the campaign was to place the baby on his stomach and not on his back.

In other research I have found that SIDS babies seem to die between the hours of 3:00 am and 6:00 am. This is about the timeframe that we have established for Toby’s death, although we don’t have the autopsy report back yet. Mom says that when she came up at 9:30 (after she heard us screaming) he still felt warm. However, he had been next to Pete and could have been gotten warmth from him. When I started CPR on him he already felt cold and lifeless to me. Actually from the moment I saw him I pretty much knew that he was gone. He was already turning blue. I think he must have passed away not long after Pete laid him down, which would have been closer to 4:00 am.

At any rate, I thought explanations to these precautions might be helpful.

One of the biggest things that I have found is that in SIDS babies something isn’t quite right in their developing stages. The part of the brain that tells the heart to beat the lungs to breathe just doesn’t do its part. And while you can follow the precautions, that’s something that you just can’t fix. You might be able to catch it if you stand over your baby 24/7 but that’s still no guarantee.

If we choose to have another baby then we will invest in an angel monitor. I know there are mixed reviews on these, but it’s better than nothing.

I have a friend whose baby died of SIDS and she thinks that hers might have actually been sleep apnea and I’m not ruling that out, either. I am pretty sure Sam has it and we are going to call the pediatrician, make an appointment, and have him sleep tested. Mom has it and I’m not so sure that I don’t have it. I have no idea if it’s genetic or not but Sam is a very poor sleeper, has stopped breathing in his sleep, and snores louder than we do. While we have insurance, we may as well make sure he’s okay. 

There are some risk factors associated with SIDS and they are as follows:(taken from http://www.beliefnet.com/healthandhealing/getcontent.aspx?cid=11559)

• Infant's age: less than 6 months old
• Low birth weight
• Fetal growth retardation
• History of SIDS death in a sibling
• History of an acute life-threatening event
• Previous incident of unexplained severe apnea (when breathing is repeatedly interrupted) requiring resuscitation
• Sleeping on the stomach or side rather than back
• Other risk factors are more general and include:
  • Mother's age: younger than 20 during first pregnancy
  • Black, Native American, and Alaskan Native families
  • Poverty may play a role
  • Sex: male
  • Smoking during pregnancy or in a house where the baby is sleeping
  • Alcohol, opiate, or cocaine use during pregnancy
  • History of anemia or a urinary tract infection while pregnant
  • No or late prenatal care
  • Premature birth
  • Recent infection and/or fever
  • Cold weather in late fall or winter
  • Overheating
  • Low socioeconomic status or low level of education
  • No pacifier use at bed time
  
  And again, here is a bigger list of "Preventions"
  
  

  Prevention

  There is no way to predict which infants will die of SIDS. Several actions may help you lower your child's risk of SIDS:
  During pregnancy:
• Get prenatal care early and regularly.
• Do not smoke or use drugs while pregnant.

After birth:

• Put the baby down to sleep on his or her back.
• Other factors that may help reduce SIDS risk include:
  • Provide a firm crib mattress.
  • Do not place blankets, a comforter, pillow, or sheepskin under the baby.
  • Do not let the baby sleep on a waterbed.
  • Remove soft, stuffed toys from the bed.
  • Keep the baby's room at a comfortable temperature (68°F-72°F).
  • Do not overdress the baby.
  • Allow pacifier use during nap time and bedtime.
  • Do not cover the baby's head or face.
  • Avoid overheating.
  • Do not smoke in the house, or quit entirely.
  • Take the baby for regular medical care.
  • Have your child immunized at the recommended times.
  • Learn infant CPR.
  • Allow the infant to sleep in their crib in the same room you sleep in (but do not let them sleep in the same bed)

Moving Forward

October 3, 2010

I wasn't sure how the SIDS blog would evolve or how people would take it, but so far so good.

I am going to try to go to counseling one day next week but I don't have a lot of expectations for it and if I don't get a good rapport with the counselor then I won't be returning. Many counselors that work at a lot of the places around here that take Medicaid are as educated as I am an in some cases, less. Some of them simply have degrees in Psychology. I could just imagine going to someone like Lynn. Although I see the benefits of talking to an outside person, I'm just worried that I am going to take everything they say with a grain of salt and go in there with a know it all attitude.

I did call the SIDS Alliance, like I said in my last post, to no avail. The closest Compassionate Friends meeting is in Frankfort.

In other sad news, another baby here in our own of 2,000 died last week. He was 8 weeks old. Supposedly, only 2200 babies die a year of SIDS. Why is Irvine being hit so hard. The story there is that the mother was breastfeeding and fell asleep. Her breast apparently cut off air supply to the infant. She is an understandable mess.

I realize now that I might ever have been helpful to anyone needing advice because the advice that has been given to me for the most part has really sucked. I finally met someone (well, I already knew them) and we spent Friday talking back and forth via FB about our different situations. Well, they weren't that different really. She lost hers at 10 weeks. I think about that in terms of Sam Time. At 10 weeks Pete was back in England for immigration stuff. That would have been like him dying while Pete was gone. Terrible. He was already an integral part of our life at that point.

Pete's sister wrote him a text and asked him how he coped when people told him that he needed to move on with his life. I can't remember what he wrote back but I know what I would have said. I would have told them to fuck off, only I would have done it publicly, in my blog, and stirred up all kinds of trouble in the process. But I would have worried about that later.

Seriously, a week after Toby died a friend of mine asked me if I was still crying everyday and then gave me a big spiel about her health problems. You know something? I'm not even sure what went on that week. Aside from the anxiety medication they gave me, I was in shock. I didn't care about her damn problems. She might as well have been speaking Greek to me. There is no time limit on these things. I feel guilty because everyone else around me seems to be doing pretty well and adjusting okay and I am the one still falling apart. That makes me feel pushed to get better soon, only I know that the only person doing the pushing is me.

I found out today that the couple who owns this house had a stillborn baby here on July 5^th. Of course, that was 10 years ago, but that was the day that Toby was born. How ironic is that? A woman that read one of my dreams said that Toby Is going to send me a new baby and that the day that he's born on will be significant to Toby, either his birthday, expected delivery day, or his death. That's pretty detailed. We will see.

3 months

October 1, 2010

Before Toby died I was diagnosed with PTSD. I had it the last two weeks of his life and it makes me angry because I feel like I wasn’t on my game during those weeks. Well, I know I wasn’t. Supposedly, it was brought on by his birth and might have been mixed with post partum depression. At any rate, I was a mess. Sometimes, the room would feel too big and other times it felt too small. I couldn’t get enough weight on me and when this would happen Pete would pile every blanket in the house on me. I had to stay upstairs because it’s darker than downstairs and the light bothered me. Little things made me freak out. The only thing that made me feel normal was taking the anxiety medication, which just knocked me out, and being around Toby. We almost didn’t go to Nashville for my cousin’s wedding because we weren’t sure how I would do but I’m glad we did. It’s the last good memory I have of all of us being together.

The other day I went to visit my friend and her little boy at the hospital. He had three surgeries that day and she was holding up better than I would have been. I was worried about the hospital because it’s the same one I had Toby at but we were in a different part so it didn’t feel too bad. Chasing Sam around kind of takes your mind off of things, too.

I know people probably feel like they have to change the way that they talk when they are around me and Pete, but honestly I feel like I have to change the way I talk around them, too. I’m becoming very guarded in what I say to people nowadays because most things resort back to people analyzing me and that just ticks me off. Or explaining me to myself which frustrates me even more. It’s becoming increasingly difficult to have a conversation with a lot of people because I feel like I’m having a lot of things explained to me.

Maybe I’m going through the anger stage now.

I had to defriend a person on Facebook today. It wasn’t a huge loss because it wasn’t someone that I was very close to, but it did kind of make me sad. She had been writing me all week telling me about her medical problems and when I signed on the other day she immediately started telling me about she had hemorrhaged and died the night before and how they had brought her back to life. The conversation went on and on and it sounded way too familiar to Toby’s birth (although the circumstances weren’t anything alike) and I started feeling anxious. I couldn’t talk to her.

Part of me wanted to be a good friend and listen but the other part was saying, dude, I can’t even handle my own stuff. I sure as HELL can’t handle yours. And I hated the way she kept more or less comparing our situations, like I would certainly understand what she was going through because I had “been there.” Um, this is not a club I want to belong to. I am not proud to wear this badge.

Besides, I don’t think I can be of help to anyone right now. If someone had lost their child to SIDS and wanted to talk to me about it, then I would try. I don’t know that I could be helpful, but I could listen and commiserate and we could be angry and sad together. But I’m not a counselor and I’m kind of new to this and my own moods change by the hour-sometimes faster. I don’t know that I could be good to anyone.

But somehow, I seemed to be grouped into this group of people who have had terrible things happen to them. One of my friends kept pushing me to talk to someone that they knew because that person had been through a similar experience. I wasn’t ready. Later, I found out that the person had lost their child during pregnancy. It’s not the same thing. I couldn’t relate to that. Heck, even the support groups at the hospital separate people into newborn deaths, stillborns, ectopic pregnancies, stillborns, miscarriages, and parents who have lost their children due to illnesses. In some ways, grief is grief. In other ways, it’s extremely different. I couldn’t, for instance, relate to someone who lost their 10 year old to cancer. I didn’t see Toby suffer, I didn’t spend that many years with him, and there was no illness to fight with him. I wouldn’t be able to relate to that person’s grief. Yet, you lost someone and you get grouped together.

It’s all very new and strange.

I have tried speaking to Ashley about it a little bit, since he lost someone a year ago, and although we can relate on some level (we’re both sad and seem to have trouble at night) we are both going through very different things.

I did try to call the SIDS Alliance today but the number I was given was wrong and when I researched for another number it was invalid. The closest SIDS support group seems to be in Frankfort and that’s way to far to drive, although I wouldn’t mind meeting other parents in the area. I wonder why we don’t have such a group?

Sometimes, I feel like people’s “projects”, too. But I guess that’s better than being totally ignored so I’ll let that one slide for now.

I’ve been thinking about another baby. I was trying to explain this to Pete but not doing a very good of it. It would have been one thing if we had decided to have only one child and be a single child household. We might have wondered from time to time what it would have been like to have had more and may have even had regrets on down the line. But now that we’ve had two and seen what it’s like, I don’t think we can ever go back to just having one. It will never feel the same as it did before. We will always know that our family is incomplete because we are missing someone. That is a very sad feeling.

I think I would like to try to have another baby. Actually, I know I would, but the idea scares me. I have talked about it with other people and finally I figured out that it doesn’t really matter what anyone other than Pete thinks. So I’ve stopped asking opinions.

It might even be fun to try. Sam was definitely not planned and was a huge surprise to us. Toby, on the other hand, was a little different. We were not “not trying.” If it happened, it happened, but if it didn’t that was okay, too. Then, at the last minute, we had decided that we didn’t want to have another one. A week later I found out I was pregnant.

Planning one would be completely different. I had to review this website for one of my jobs the other day and it was an ovulation calendar. I played around with it for fun and thought that if we did decide to have another one then we should try to make it fun (ha ha) and actually look at stuff like that. Do our best to make it exciting and different.

As always, nights are hardest. I miss him a lot. Some days I cry because I have trouble remembering his face and how his weight felt. When I tell people that they start explaining to me about coping mechanisms and how the brain works so I just stop and miss him to myself.

He would have been three months old.

Websites

I've found a few websites that are helpful. I haven't played around with too many of them but I'll try to keep a running list of the ones that I think are of good value.

Centering Corporation & Grief Digest Magazine Online Resources  This site has some good information and links, but it also has products that are interesting as well. You can purchase memory books, for instance, as well as books that talk about grief and loss.

Bereaved Parents of the USA This is a non-profit group and they have quite a few chapters around the United States. It's not just for parents, but for grandparents and other caregivers as well. The most helpful things I have found on the site include a list of really good links as well as an article describing some of the feelings that you may or may not have in the first few days/weeks/months/years.

Baby Steps This site has some "sharing" stories and it's very user-friendly.  It's not extremely comprehensive, but their list of "do's and don'ts" is pretty good. And it has a cute little house as its interface.


The COPE Foundation  This site is very comprehensive and one of my favorite things is called "The 10 Common Myths about Grief and Children." We forget sometimes that our other children are feeling grief, too. Even though Sam is only 3 he still mentions Toby every day and even sings little songs about him.

Grieving for Babies  There are helpful videos on this site and you can also join and become a member to share your experiences with other people in similar situations.

Share There's a lot of stuff on here, but the blog is my favorite. Different people write in it and it's good to get an idea of how other people are coping. Everyone does it differently, but there is still enough of an element of sameness to make you feel like you're normal.

Web Healing  There are lots of things to explore here. The articles are good and there is also an active forum, too, with current threads.

The Compassionate Friends Network   This is one of the most popular grief sites on the 'net. There are events, newsletters, local chapters, and resources listed. There is also an online community that you can join and interact with other members which you may find beneficial.  It's also available in Spanish.

SIDS Center This offers a lot of information related specifically to SIDS. One of the best things is information pertaining to the holidays. I find this interesting because even though we never got to celebrate any holidays with Toby, there will still be an ache that he is not there to celebrate future ones. I was particularly looking forward to Christmas this year, for example.

First Candle This might actually be one of my favorite sites. It is very user-friendly and has a lot of information about SIDS, from autopsy reports to current research.

One month anniversary

September 22, 2010

He might want to remain anonymous so I won't use any details, but someone who has been following my blog has offered me a very generous thing-to stay at his B&B for a respite. I leave in a couple of hours. I don't know how well this is going to go over since my agoraphobia has gotten a little worse, but I am going to try. I'm taking my journal, some books, and my medicine. I hope to do a lot of reading, writing, and sleeping.

I cried yesterday when I remembered that it was the one month anniversary. I stood in Toby's room for a long time and looked at his little things and then I remembered, again, that he is not coming back. Sometimes, Sam asks why we can't just go to the hospital to get him and I wonder that, too.

We still don't have the official autopsy report back yet and I am both dreading this and anticipating it. I'm afraid it won't give us any answers, but I am hoping.

For the first two weeks I was in shock. I barely remember what we did. The circus sticks out in my mind a lot. Now, I'm feeling numb and that's a different kind of pain altogether. I can't remember what his little head smelled like. I don't remember what the weight of his felt like. It takes longer to bring his face into my mind. The only image I can clearly see is the one where I found him lying in bed, already turning blue, and that one haunts me. I can't get it out sometimes.

I did something really stupid a few nights ago. I was already feeling sad and upset and I got a not so nice message from my father-in-law. Instead of dealing with it logically, I cut up my forearm and wrist. I've gotten worse cuts from the blackberry bushes but that's not the point. I had sat there all day trying to think get that image of Toby, already dead, out of my mind and the look on Pete's face when he realized that he was dead out of my mind and then that message was the last straw.

Actually, that's not true. The last straw was when Pete's so-called friend had his "best interest" at heart and wrote on my blog that I was "quite disturbed" and a "piece of work" and that I "couldn't even blame it on grief." The father-in-law thing just pushed me over.

I argue with my husband because he claims to be able to deal with these things better than me but sometimes I think it's because he doesn't deal with them at all. He's not getting the nasty text messages because Mom confiscated his phone when they started. But that didn't mean that she and I didn't get them. He didn't get the nasty e-mails either. Aside from losing my child I've been accused of being a bad mother, killing my child, being a bad wife, ruining my husband's future and a variety of other things. So no wonder I'm not coping well. And when I complained about this on Facebook one of my in-laws actually commented and told my friends to "Fuck off" when they were trying to support me. It's all a big mess and really none of it should matter because I lost my baby and that's the only thing that I want to focus on. Pete's friend said that he was so pissed at one of my blog entries that he had to go for a run. Well, we're so sad here that sometimes we forget to eat and on some days I am so agoraphobic that I have to stand inside and reach my arms out as far as I can to collect a package from the UPS man.

We've ordered copies of every picture that we ever took of Toby and that also makes me sad, knowing that there will never be anymore. What we have now is all we will ever have. I could have hundreds of photo books made and put the pictures in different orders and even play with them on Photoshop, but that's still it. There will never be any new ones.

Some of my friends are having a yardsale this weekend to try to raise money for his funeral expenses and a headstone. I don’t even know what to say to them about this. It's so nice. I cried the other day thinking about him not having a headstone and my mom said it would be okay, that he would have one by Christmas. That made me cry harder because his Christmas presents should be toys and clothes-not a headstone.

When we had his picture taken at the hospital they took my email address and for some reason I get thee emails telling me what my baby is going at this time. Like "now at week 11 your baby should be…" only he's not. He's in the ground.

My friend Karen has taken two nights away from her own family this week and stayed with me so that I can have someone to talk to. I want to talk to Pete but it's hard. He says it's because he's always with Sam (which is not entirely true because sometimes I am and sometimes Mom is) or because I'm on the computer (also not entirely true) but what I really think it boils down to is that he just doesn’t want to talk to me and he's making excuses.

Sometimes, and I know this is awful, I envy those people who have children with illnesses because at least they can fight for them. They can run tests and seek treatment options, and sometimes even get better. We had no chance with Toby. We didn't even know anything was wrong. When I went to bed that night he was a healthy, happy, baby. He'd laughed for the first time that day. When I woke up, he was dead. We had no chance to fight for him.

Losing Toby

September 8, 2010

I lost my baby boy, Toby, on August 21st, 2010. The week before I had been diagnosed with PTSD due to the traumatic events that surrounded his birth. I had mils preeclampsia, placental abruption that lead to hemorrhaging, and had to have a blood transfusion, He was 4 weeks early.

After being born, however, he was perfect. He weighed 6 pounds and although the NICU kept him overnight because of some “grunting noises” he was doing, I was still allowed to hold him a few hours later. I promised him that things would get better.

Toby was nothing but a joy. He slept well, smiled a lot, cooed, and like to be held and rocked. He slept in a bassinette by the bed that I had moved into our office upstairs.

My husband, mother, and I had a routine with him. I would stay up all night with him and do the night feedings, Mom would take over in the morning so that I could go to sleep, and my husband would take him in the evenings. Basically, we all shared him in the evenings anyway. On the weekends, my husband stayed up all night with him so that I could sleep.

SIDS was my biggest fear. I was overly paranoid about it. After two weeks, Toby started grunting all night and it was difficult. He wasn’t getting good sleep and couldn’t sleep for more than an hour or so at a time. Eventually, the grunting woke him up. We took him to the doctor who said it might be acid reflux. He prescribed him Zantac. Still, you could tell that the little guy wasn’t getting any quality sleep. Sometimes, when the grunting stopped, I got up and checked on him and he would immediately start the loud breathing again.

Sometimes, I laid down on the couch with him and watched TV. I rarely snoozed because I was afraid of falling asleep and not being there for him should something happen. I begged my husband not to sleep when he had him because my husband could sleep through a hurricane. In fact, some mornings when I was downstairs I could hear Toby crying at the top of his lungs while my husband slept in the bed next to the bassinette. Falling asleep, he had forgotten a feeding and no matter how hard he cried, my husband just couldn’t wake up. So I begged him not to sleep.

They couldn’t get my meds right with the PTSD and when they finally gave me Klonopin it made me sleepy. I couldn’t take it until someone came home and I could nap. The night that Toby died I took 2 and went to bed. We were going to a book signing the next morning. I awoke around 9:00 am and the house felt really quiet. I took a quick shower and then poked my head in on my husband and Toby. I saw my husband in the bed, on his side. Toby was not in his cradle. I thought that was odd but figured that he had taken him down to Mom so that I could get some more rest.

I then got dressed, woke up our 3 year old, and went downstairs. I turned on some cartoons for him then I went in Mom’s room to check on her. Toby was not there. A feeling of dread began building in my stomach. I reached back up the stairs and ran to the bed. Toby was behind my husband, asleep. Only he was blue. I screamed and for once my husband woke up.

Although in my heart I knew it was too late I turned Toby flat on his back and began administering CPR. My mom called the ambulance. My husband took our 3 year old and ran out in the yard to watch for the ambulance. I could see him screaming. Toby did not respond to our efforts.

The paramedics came and gently took him to the ambulance. They strapped me in and encouraged me to talk to him. I asked them if there was any hope and one guy replied, “There’s always hope.” Later, when I asked him if he was getting any reaction he said no.

We got to the hospital and within minutes the doctor came out and told me that he was gone. A nurse came into a waiting room with me and sat and cried with me. Eventually, my mom and husband showed up. Mom knew by the look on my face that he was gone.

They allowed us to sit in the ER room with Toby for hours. I talked to him, brushed his hair back, and wiped the blood off his cheek from where they had inserted the tube down his throat. Our friends Ashley and Karen had come to the hospital and stayed with us in the room.

Everything was a blue after that. I kissed his hands and his cheeks and went between sobbing and moaning. Karen stayed with me for awhile so that I could try to get some valium but it was taking so long that we eventually went home.

There were already people gathered at our house. They immediately put me to bed. Someone, I think my husband’s boss, made me some tomato soup. Someone else gave me a pill to help me sleep. When I awoke, someone was in the kitchen making lasagna. They said that they were going to clean out our refrigerator.

Over the course of the next few days, other people showed up. They scrubbed our bathrooms, brought food, and generally sat and talked to me. I did not get dressed. I was unable to pick out the casket although I did pick out the three songs that I wanted my friend to sing as well as the burial plot, next to my grandmother.

It was a nightmare.

The visitation went well but it didn’t look like him. He looked bigger. They’d had to use a lot of makeup because of the levividty and it made it him look different. I kept holding his hand and talking to him.

I could watch then put the dirt on the grave because it was too much. My friend sat on the grass with me and sang me Pam Tillis songs so that I couldn’t hear the dirt hitting thee coffin. I was glad that I had brought flowers from home so that we could toss them into the grave. I had planted them when I was pregnant with him so they felt like ours.

I still miss him everyday. It has been two weeks to the day that we buried him and the pain is more acute now than it was before. I had a panic attack all day yesterday because I kept seeing his face when I found him. I had also convinced myself that the cover that my husband was using had somehow gotten over Toby’s head and suffocated him.

I am being a terrible parent to my three year old but I can’t help it. We took him to the circus last week to try to do something fun and my husband takes him to the playpark when he can but basically my mom has been taking care of him. I am entering a deep depression and have such anxiety that I don’t know what to do with myself.

One of my thoughts was that at least I didn’t go through with the hysterectomy. That would have been awful. I want another baby because my arms feel useless and I feel useless and I feel like I was robbed. My husband goes back and forth on it. We will see. Some people say have one eight away because it will make you feel better. Others say that you should wait a year or so. I guess it’s up to us. There were so many things that I was looking forward to in having two boys, or two children. I want those things back.