Monday, November 30, 2009

Heartbreak

First I want to say that the downside of having a "public" blog, is that anyone can read it. Sounds kind of obvious doesn't it, but the point is, that whoever reads it, might also find themselves mentioned in it. I do my best to keep friends and families private lives private, and I try not to write anything that might offend or hurt. But even if I don't use people's REAL names, if your reading a story you recognise as your life, and It's in my blog, a fake name won't stop you knowing its all about you. I have to tread carefully, especially today, because what I'm about to write, is hard. It's painful, It's heartbreaking and It's not my story. But this is my blog, and despite it not being MY STORY, its affecting me right now. And that's why I write. To get things clear in my head.

I went to high school with a pretty ordinary bunch of people. Most of us got along, and life was fraught with the dramas of being a hormonal teenager in a regimented, strict, unbending school atmosphere. It was just school. It was normal. A week after I graduated high school, I was asked to interview for a role in a childcare centre as a trainee assistant. I was interviewed, immediately short listed and got a call three days later saying I'd gotten the job, to start on Monday.

I walked into my new job on the Monday, and walked smack bang into two girls I already knew - from School, we were all working together. It was nice to see a friendly face! For a year and a half, the three of us (and a bunch of other new staff) worked closely together at the centre, before one girl decided to move onto a different child care centre.

After that move, we sort of lost touch. We didn't really "hang out" together at school, and once she'd moved on, career wise, there seemed to be nothing left to talk about, so contact stoped.

Then came facebook. She added me, and I caught up on her life. Now married, with a beautiful daughter just two weeks older than Lucy and expecting her second child, due the day after my due date with Bean.

We laughed that our pregnancies were so similar. Same hospital, same sonographers, same doctors, same dates. We said we'd share a room, joked that it would be great to take a "real" shower after the birth of our babies, because we both know each other is great with kids, and could watch both babies at once. It was fun. It was nice to have someone else to be excited with.

The day we found out Bean was sick, was the most stunning day of my life. I literally went into shock. Shaking and crying and hyperventilating, I was horrified. Two days later we had our second, high risk obstetric appointment. Sitting in that waiting room, knowing that possibly today was the day they would tell us our baby was gone, was revolting. It really was. And then through the door, walked this girl and her husband. Her! The girl I went to school with. The girl I worked with for close to two years, The girl i was sharing my pregnancy joys and woes with, The girl who's baby was due just a day after mine, WALKED INTO THE CLINIC, sat down and said - "what are you doing here!!".

I was SO happy to see a friendly face, but SO worried about their baby. Surely we couldn't both be about to lose our precious children! We exchanged phone numbers, promising to keep each other in the loop, and went in for our separate appointments.

At the end of our scan, our Bean was stable. At the end of her scan, her baby's spine looked fine, but was measuring a little small, and she was referred for another scan in two weeks time to check out the baby's heart with a cardiologist - they suspected there was a hole.

Two weeks later, Our Bean was still stable, and their Baby had NO sign of a hole in her heart, and they were referred for another scan two weeks after to check the growth.

Again - Bean was relatively stable, although the blood flow had peaked at scary heights.

Their baby girl. Well I don't know. But I know its not good. I know this because when I messaged her last night, to ask how her most recent scan went - She said she wouldn't say. But she said she wishes us luck, and hopes it works out better for us than it did for them.

It may have happened last week, It may be happening today - but I can say, I'm certain, that this couple have lost their very much wanted baby girl.

I don't know why. I don't know what happened, and I'm not going to chase them down and ask all the questions that are going over and over in my head. I sent a text message back saying I was so sorry things hadn't gone better for them, and if they need anything, to call. But really, I don't expect to ever hear from her again. Not in the near future.

When you lose a baby, It's so HARD to see other happily, blissfully pregnant women. The thing that tied us together, after all these years of knowing each other was our babies. Our pregnancies. Once one of those babies has gone, a pregnancy has ended, the bond isn't there anymore. It just HURTS too much.

She was a part of my life, on and off, for 12 years. That's a long time to know someone, even as a casual friend. I hate that this has happened to them, to their baby. I hate that they are hurting so much. And I hate that, as good as my intentions might be, seeing me, won't help them. It's not fair on them.

Most of all, I just hate that again, someone has to lose a baby. To be a part of the statistic. I hope she knows how much she helped me, just by being in the waiting room that day to keep me sane. Sadly, I'm not sure I'll ever get the chance to tell her how much.

Tuesday, November 24, 2009

Up and Dow

it never ends.

Good news is, Bean is better than last week, in a manner of speaking. This week he's measuring 2 weeks small again, but that's OK, he still put on weight, just not quite enough. He should have put on about 60 grams, he's only put on 30.

The fluid is completely gone. The tech thought she saw fluid around the heart, but on further checking decided it was probably just the angle, and said even if it IS fluid, its the most tiniest amounts, its not even worth noticing.

The blood flow. The bane of my existence at the moment is the damn blood flow! It goes up and down and its all over the shop and its FRUSTRATING!! After last weeks scan when the blood flow was measuring at 57 (I think its meant to be about 35!), i nearly had a heart attack! Its never gone up over 46 previous to this, so 57 was a very scary jump, the scariest thing was there were small periods when the flow was so fast it appeared to almost be skipping - NOT GOOD.

We got told AGAIN last week that we should be aware that the baby might not make it.. yadda yadda blah blah, the same story. It was just shocking, because after the first two weeks in this game, everyone started acting positive, and stoped talking about "might die", and instead was talking about "get to 32 weeks, baby has excellent chance, take him out early and start treatment, Might possibly be fine". To suddenly step back to hearing "might Die" again, was a blow.

It was decided after that scan that I would go back on the baby aspirin. I was taken off it earlier on because of the risk of doing invasive treatments with blood thinners in my system - namely the Amnio and a blood transfusion. Since i stoped the aspirin, the blood flow count has risen. Last week it was at a scary high. So now I'm back on aspirin for the duration, to see if that maybe just helps lower the counts enough to give bean a better chance.

The other decision. No more caffeine. AT ALL. Bean is still measuring small and caffeine can stunt a babies growth. While I haven't been having a lot, its something I can do, to feel like I'm proactively helping bean. And if something goes wrong, and I didn't take this step, I'd never forgive myself.

We still don't' have a diagnosis on whats going on with Bean. And Frankly, the doctors have stoped looking for one. Who can blame them? I'm OK with not knowing. As long as Bean keeps kicking and jumping and showing OK on scans, and hopefully growing, I'm happy.

5 Weeks Beanie-Baby. Just hold stable for 5 more weeks,and then maybe we can fix you up.

Monday, November 23, 2009

Its that day again

SCAN DAY.

Please God, let the blood flow be back in a more reasonable range. The longer this goes on, the more i feel my baby kicking and jumping, the more in love I fall.

If this is going to end badly, if my baby won't make it, I just want it over now.

5 more weeks until viability. Just 5 more weeks. Hang in there Bean, I'm doing everything I can for you, but at some point, Its just you and God.

Thursday, November 19, 2009

Irrational perhaps

but I still want to slap him and tell him to wake up to himself.

I got so lucky with Matt. He's such a wonderful man, he's supportive, he helps out and he's a fantastic father.

Other men - not so good.

GROW UP.

Tuesday, November 17, 2009

massive waves of guilt

because, lets face it, I've been completely and utterly self absorbed the past few weeks.

One of my closest friends packed up her kids and left her partner. I had no idea. Why? Because I've been totally focused on my life and my family and my issues and its been all me, me, me.

I'm a shitty friend. The shittiest type of all at the moment.

I can't excuse my behaviour, or my total ignorance. I mean really, she packs up her two kids, four months before their wedding, and moved out. I didn't even know they were having problems. I was walking around totally clueless. And damn, don't i feel like the worst, most guilty friend ever. And before anyone tries to tell me maybe i wouldn't have known - If i had BEEN there like i should have, i totally would have known. Because she's one of my best friends. And she tells me that stuff.

I've managed to alienate some of the people who have supported me most in the past four weeks, completely without even realising I've been doing it. And nobody would say anything either, because they are all too sweet, amazing and lovely. And I'm the crummy friend who's just riding along on it.

Another friend said that her life feels trivial compared to mine. NO! I don't want my friends thinking their issues, their worries and problems are less important because of my behaviours and attitude. I used to be the friend people rang in the middle of the night to cry to, to ask for help. I used to be the friend that would drive to the moon and back in the middle of the night, just to hug someone when they needed it. And my friends used to be able to count on me for that. Nowadays, they don't even feel like they can tell me if something in their world has gone to shit, because I'm too busy moaning about myself.

I'm SO DAMN GUILTY!

Friday, November 13, 2009

Birthdays

take on a new meaning once you have kids. It's always nice to get presents, and have people make a fuss over you. And if your family is anything like mine, it's an excuse to actually see some of the family members who you don't see much of throughout the year. I come very much from a "birthday's, Christmas's and funeral's" type family. I'm very close to my parents, and my brother and sister but other than that - nada.

Next week its my birthday. It seems a little surreal this year, with Bean fighting to keep going every day, for me to be thinking about my birthday. Because really, this year, it's just not that important.

Lucy is old enough now to LOVE birthdays. More so if they are hers, but she loves anyone's birthday. Particularly if there is a party involved. She can't stop talking about my birthday. Or when Baby Beans birthday will be (we don't know), and about her Grandma Kings birthday which is few days after mine.

The absolute best thing about birthday's when your a parent is when its your childs birthday. Lucy's last two birthdays have been so much fun. It means everything to a parent to watch their child grow and achieve a milestone of a birthday. Counting down the years, watching them grow, its a really special thing.

Which brings me to Maddie.

November 11 2009 was Maddie Spohrs 2nd Birthday. Tragically for her family and friends, she celebrated this birthday up in Heaven, with Jesus and the angels after suddenly and unexpectedly passing away earlier this year.

Any anniversary after you lose a child is impossible. It hurts SO much that time has passed by while your grieving. It sucks that while your world is falling to pieces, that life does go on.

But I know, Maddies parents celebrated her birthday with all her favourite things. The colour Purple, Cream Puffs, flowers and songs. Its just so sad that she wasn't here to join in the fun. How hard it must be to pass the years with anniversaries, and birthdays, with only the memories to guide you through.

Pray for this family, they need it so much right now.

Monday, November 9, 2009

The most hillarious sentence i heard all day

was "do you consider yourself to be at high risk of suffering with PPD?" (Post Partum Depression).

Holy crap lady are you kidding me?! Let us run through the facts shall we?

- I'm sure after Lucy was born, i suffered with depression, undiagnosed for about three - four months.

- I've lost four babies previously which makes me a little, shall we say, highly strung about being pregnant

- Thus far, with this pregnancy, I've had 15 scans. Most people have two, three tops. We still have them at least once a week.

- I'm considered incredibly high risk - hence the repetitive scans

- My unborn child is SICK and I can't do anything but pray and hope he or she is strong enough to pull through.

- We have been told, absolute best scenario, we get to 36 - 38 weeks gestation and then its off for a C-section.

- Worst case - steroid shots and bean might make his or her arrival around 34 weeks, maybe earlier which means NICU time.

- We have no idea what is wrong. The doctors have stoped writing a "diagnosis" on the forms. They don't know what to put. We're pretty sure its not something THAT serious, but we can't know for sure, and so they leave the "diagnosis" field blank. Its not reassuring.

- We have a daughter who is constantly asking about baby bean, wanting to talk to and kiss my belly. I worry every night that i might have to tell her, her much wanted baby has died. I want to protect my child. But If something goes wrong, I have to tell her. Its my responsibility.

- I'm not a candidate for shared care, every appointment i have, every check up, I have to see a high risk obstetrician. Which means more hospital visits.

Really? We don't have a whole lot of positive going on! Would I consider myself a high risk for PPD? Honey, If I come to this time next year with my nerves and sanity in tact, and two happy, healthy children at home, then I'll consider it one MAJOR achievement!

By the time I'd rattled off my list to her, her survey about "are you scared of your partner", "Do you have good family support at home", and "Will your partner help you with this baby", was looking pretty useless. I asked her nicely just to write "SCREWED UP" across my file. She did not laugh. She did however ask me to fill in the survey anyway - in the privacy of the toilet of course because we don't want Matt to know that I'm answering supposedly "anonymous" (with my name and ID # at the top) questions about his ability to be a decent human being. Heh.

And so, that was my booking in appointment to a hospital that I've at last count had 13, Medicare funded Ultrasounds in, in the past 17 weeks. (The other two were privately done). Next week? We go back and do it all again, because since I'm "high risk", the obstetrician has to book me in.

I can hardly wait.

Wednesday, November 4, 2009

Fluid decreasing

blood flow back up too too high. *sigh*. I'm already over this roller coaster and you know, its only been almost three weeks since we got on it!

The one good thing is that Bean is 3 weeks bigger and stronger than he was when we first noticed the problem. Which means 3 weeks closer to viability, a short long, slow 8 weeks away.

If we can just get to that point, we can start to breathe a little easier. Because right now if things go haywire, the doctors will sit on their hands and watch our baby die, all while telling us about how "termination should have been an option for us". Sometimes they are so incredibly insensitive.

BUT positive thoughts, really, with the fluid going down, Bean is no worse than he/she has been so far. Just back in the not quite normal range.

And the other positive thing is that they have said we can wait till Monday to come back for another scan. 6 Days without a trip to the hospital!

More time for Lucy, and more time for us, as a family. This week anyway!

Tuesday, November 3, 2009

How bleak

have things gotten around here lately!!

Wow, reading back over my last few entries, its all somber, and scary and dark, and while I'm not apologetic for that, it just seems, depressing.

I'm not depressed. Not now anyway. I think I was a bit at the beginning. It just hurt to think that the baby we tried 8 months to conceive, the baby that we managed to hold onto for 18 weeks, was then given a death sentence diagnosis, at what we thought was essentially going to be such a routine scan.

That Sucked.

We've got another scan this afternoon, and already the nerves are kicking in hard and fast. People keep telling me God doesn't give you more than you can handle but you know, that might be the case, but we'd like it easy anyway!

Challenges suck. I'm not a fan of being challenged like this. Its hard to keep your family together when you just want to fall apart.

I feel horribly guilty for what this is all doing to Lucy. She doesn't understand. We haven't told her anything is wrong with the baby, she knows there is a baby and she's so excited. But all the scans, the hospital check ups and meetings mean that she's left behind a lot of the time, because if i walk into an appointment and hear the worst, I don't want to have to hold it together for her sake. I want to be able to focus, and cry, and ask questions and make decisions. Not a place for a two year old to be. Which leaves her at home. With grandma. Or at childcare. Or with my sister. Or my dad. All her favourite people - right after mummy and daddy.

I know she misses us, I miss her too. But I don't know what we can do about it. At least now we're having scans twice a week, not every two days, which means one less appointment, and we're trying to spend weekends loving on her so so much. But at the same time. She's 2! She has tantrums. She wants what she can't have. She wants to say No. To assert her independence. And we want her to do what we ask her to do. We want her to tidy up after herself. To go and play outside instead of asking to watch TV all day. To go and amuse herself while we get dinner cooking.

Its all so freaking exhausting at the moment. There has to be a "middle ground". I just can't quite find it.

Sunday, November 1, 2009

The news is getting better

but I'm still terrified!

First of all though, I'm very sorry to those waiting for this post, I've just been exhausted, and really, haven't had the time to get on here and add the most recent and required updated. Although, part of that might just be because I CANT. QUITE. BELIEVE. WHAT. I'M. ABOUT. TO. SAY!

Bean is getting better. Like I said, I can hardly believe it myself, but It's true! According to our most recent scan on Thursday afternoon, Bean's fluid is decreasing (just a tiny bit, but It's less which is awesome!), and the blood flow through the brain is back within normal limits! Also, there was no comment on any of the reports about the "bright" bowel, so we're happily believing that this is because its back to looking normal as well!

At this point, the only thing wrong with bean is that there is the most tiny, almost impossible to see hole in his/her heart, which the cardiologist has said he believes is already closing up, and will NOT cause Bean any problems whatsoever.

I'm booked in for a "medically required" as opposed to "elective" C-section to deliver Bean at 38 weeks gestation, which to me is terrifying! The cardiologist says that the heart is strong enough, and in pretty much perfect condition, so a natural birth would not be a problem, but we're all conservatively agreeing that because we wont know WHAT might be wrong with Bean, the best idea is to go for minimum stress, and to do the C-section anyway. This means, hopefully, Bean will be making an appearance at around the 5th of March next year, leaving me with only 18 weeks of pregnancy left. If it goes anywhere as quickly as the first 20, we'll be meeting Bean in no time at all.

It's incredible to me that Bean is getting better. Just two and half weeks ago, our doctor told us to prepare ourselves for the worst, and to start considering a termination because it was looking likely that our baby would die, probably before 24 weeks gestation. That same day, he pushed us, (HARD) to get the amniocentesis done, to find out what we were dealing with and also took bloods to determine if the cause was a viral thing.

When the results came back as being not viral, I felt sick. I had so much riding on that Parvo-virus test result, wishing and praying it could be positive because we'd been led to think that was the only chance our baby had at survival.

I guess we sort of forgot about God, and the amazing things he can do. Why have a baby with a virus, which still needs invasive treatment, when you can just have a perfect, healed baby instead!

Our next scan is on Tuesday afternoon, and while I'm actually sort of looking forward to it, I'm scared as well! I guess, I just can't believe that after the grim-ness, and the dark-ness and the fear, that our baby, might actually be ok.