ups and downs

My emotions tend to be in waves. While I have a lot more good then bad days I've been trying to figure out and pinpoint what changed to make me feel that way. Yesterday was a bad day. It didn't start out that way but by the time I got home I was really depressed.  I looked back at my day and there were 2 possibilities. I'd e-mailed a friend who didn't know about Hailey (last time we'd talked I was 18 weeks, just before the ultrasound) and told him what happened. I didn't really know if this was the right thing to do. There's no etiquette about when to tell people. I just hate that awkwardness of them knowing something happened since I don't have a baby but not wanting to ask so I just find it better to get it out of the way and move on to what's new with them. I just worry that people will think I'm looking for attention, or "poor me."

Then I started thinking about the other thing that happened yesterday. I didn't realize how much it affected me until I started to think about it and wanted to cry. The lab I was working at had a practicum student so my teacher from years ago came in to see how it was going. Last time I saw her I was 22 weeks and trying to decide what to do. I didn't talk to her about it but I'm sure she was wondering why I was no longer pregnant and at work. I hate these encounters because it makes me think of how I should have Hailey here and how unfair it is she's not.

Today is a better day emotionally. I have the day off and since I've fallen behind on school work my goal is to do a whole section of Physics and start another semester of Biology. It's so hard to get motivated at the moment. Oh and my husband convinced me to go for a 3 hour return trip to Krispy Kreme last night so there's 24 donuts sitting in the kitchen calling to me.  So much for trying to lose weight!

One of those days

I've had a pretty good week so far. I got a copy of the autopsy and it pretty much gives no answers about the brain weight. The only reason they suspect a typo is they can't find a reason for the weight difference. The weight was 32g and average is around 73g(+/- 11g.)  It was fully formed and the right length/width. Who knows, I've given up trying to figure it out.

Today while driving home from work I had this urge to go the cemetery where we scattered Hailey's ashes. These strong urges always freak me out. I got the feeling like there is some reason I'm being pulled in this direction and just have to trust it. Nothing unusual happened though. I cried and told her how much I love her and missed her and wished she could be with me. I told my grandfather how much I love him and to take care of her. Maybe it's just paranoia but I've never had that strong of a feeling to do anything before. I wonder if something bad would've happened if I'd continued to drive home. I'm home safe and sound now though.
So happy it's the weekend. I think I'm getting a cold so looking forward to sitting around relaxing after going wedding dress shopping with my sister in the morning.

Feeling Happier

This week for the most part has been a good one and I'm pretty sure I know why. On Sunday my sister came over to say she's gotten engaged! She told me she wanted me to be maid of honor and we agreed I would be no more then 6 months pregnant for the wedding. Although they haven't set a date it will either be in May or September. It feels like a huge weight has been lifted. We can either start trying in November or February and it's such a long way away I'm not worrying about it. Getting pregnant at the moment doesn't cross my mind so I don't have the anxiety of all that can and has gone wrong with the previous pregnancies. The wedding has really been a blessing in disguise. My sister felt really bad about the deal so I told her how I'm feeling and hopefully she doesn't feel too guilty now.

I'm still waiting for my GP to phone saying they have the autopsy results. I think I'll phone tomorrow and if they don't have them get the genetic counsellor to either fax it to my work or if they won't then my GP. I'd really like to read it over before our support group tomorrow night as I don't want to wait another month to really be able to talk about it. I've been talking to friends and family about my tattoo idea. I'd pretty much decided if I was going to get it to do it on the front of my foot but then a friend said you can't wear socks or shoes for 2 weeks while it heals. It's now moved up to my ankle. I told Dan Friday night while we were lying in bed and we got into a really big fight. All I said was that I thinking of getting a tattoo and he freaked out saying "you don't need a tattoo to remember your baby." I asked him if he even wanted to know what it was and where and he said no. He'd assumed I'd been talking to friends and they convinced me to do it when really it was my idea. He actually said he'd divorce me if I got one. This made me really angry.  His feelings where that we talked about it before we married and I said I'd never get a tattoo, which is true. However I never thought we'd be where we are today and that an image could be so meaningful I'd never regret getting it. Also if you'd asked me before we got married or even before we found out about HLHS if I'd make the decisions we did, I'd have said never. Yet here we are today. I've changed. I'm not the same person I was a year ago. My stubbornness kicks in too and when hearing the divorce argument it kind of makes me want to dig my heels in. Anyway long story short I explained to him why I want the tattoo. It honestly has nothing to do about remembering Hailey. What it really comes down to is that besides the ashes those footprints are all I have of her and by getting that tattoo I feel like a part of her will always be with me. I told him at night because I knew it would turn into a fight and he'd be able to sleep on it. In the morning he came to me and begged not to get the tattoo or at least wait and he'd try to think of something else that we can do instead. I wasn't planning on getting it anytime soon. I want to think about it for at least a few more months, so we'll see.

I joined a gym and Sunday's are family day so Dan and I are off to play squash!!!!

Autopsy results

I haven't seen or read the autopsy report but the genetic counsellor called Friday to say the results were back. We'd previously agreed that if everything was what we expected then we would just talk it over on the phone, and that's what we did. I'll do a brief summary and when I get my hands on a copy of the report I'll go into more detail. Basically they confirmed HLHS as well as valve atresia. I was a little taken back because although I knew about the valve issue I was under the assumption this was part of the disorder. I guess it just worries me if there was more then 1 defect. I was also surprised to hear that our odds for previous pregnancies are 3-5% for the SAME defect. Again I thought that those were the odds for ALL heart defects not just HLHS. Hearing these odds are scary. I know 5% is great odds and that they could be a lot worse and I really am thankful, but I'm scared. We went into the pregnancy with Hailey not even thinking of defects when really our odds were 1% for some sort of heart defect ( stats show about 1 in 100 babies have a defect, most of which are very minor.) I guess I just look at it as these really were our odds with Hailey and we hit them first try. She also stated that they are starting to lean more toward some sort of genetic disorder with the possibility mixed with environmental. I just hate knowing there's nothing I can do to prevent this from happening a second time.

Now for the really frustrating part.......Her brain was underweight for gestational age. This could mean 2 things. 1- Her brain wasn't getting sufficient oxygen or 2- a typographical error. Apparently in the report the pathologist questions wether the weight as a possible typo. What the hell????? I get how it can happen but how can you not be more careful? We allowed an autopsy to get answers as well as help them understand the disorder better and now we are just left with more questions that can't be answered. I'm really looking forward to reading the report and seeing why it's possibly a typo. If there's a number missing and the brain is severely underweight then yes, most likely just a typo.

This is such a strange experience. I never thought I'd be writing or telling people about my child's autopsy and her brain weight. It just feels so wrong. I miss her so much.