Wednesday, December 30, 2009

For the first time,

since this nightmare with Bean started, I actually thought to myself, "it would have been easier to terminate". And then I cried.

I can't believe I thought that. I can't believe I even let that thought into my head, about my precious miracle baby, who has been fighting SO hard, and overcoming SO many issues.

We had another scan today. Last weeks scan was fabulous. Bean was looking great, nice and strong, practice breathing, the blood flow was normal, the fluid levels were great, we even dared think that we might get to go full term. We appeared to be getting our Christmas miracle, and right in time.

This week. Not so good. The amniotic fluid has vanished. I say vanished because that is whats happened to it. Last week there was 11cm/ml (however its measured). This week, 1.2cms. Total. And I'm pretty sure I would have noticed it leaking out. So where the hell has it gone?

We're back to weekly scans, and I'm on bed rest, with strict instructions to drink more water than Ive drunk in my entire life, to try and lift the fluid levels. If they stay at this level, we're looking at bringing Bean into the world at 32 weeks, at the latest.

Meantime the risk of infection is HUGE and every time Bean moves it actually hurts me, because there is no cushioning. And honestly, I'm just heartsick. I know this is not the worst news we could have gotten, but after such a positive scan last week, I just feel sick. After everything else, now we have to deal with this as well.

The list of things we're facing is growing longer, and I really don't know where I'm gong to find the strength for this. I just feel completely defeated.

Christmas came

and went again, with nary a tantrum in sight! Lucy had a fabulous day, she was so well behaved despite being utterly exhausted before the excitement even started.

It was nice this year, to have her so excited about Christmas. The last two years, she really has had no clue whats going on, except that she gets presents. THAT particular detail she understands!

This year we made a big to-do about Christmas, partly because we felt like she deserved some fun for a change! Christmas Eve she went to kindy as per normal but Matt picked her up early so she could come home and get ready for Santa. We wrote him a letter, asking him to leave bubbles, crayons and books (in our house Santa brings the little things - mummy and daddy are the giver of the GOOD presents!), and told him that there were two (just two mummy - no more, just two!!) biscuits waiting for him, with a glass of milk. (On that note, you tell the kid to write what she wants Santa to bring and she wants bubbles, books and crayons? How EASY is SHE to buy for?!!)

Later on that night we watched the carols on grandpa's big screen. They were on an hour after she usually would have been in bed, but we wanted her to sleep in at least a LITTLE bit for us on Christmas morning, and she'd woken up at 2am the three nights before asking if Santa had been - we weren't doing that again! Lucy curled up in my lap at about 9pm and we decided that it was bed time. Of course, she didn't want to go to bed (despite her eyeballs hanging out of her head and every second word being preceded by a yawn), because SANTA. IS. COMING.

Christmas morning all the family came up and we opened all the presents together, Lucy was quite chuffed that Santa had eaten his biscuits and drank all his milk, she was quite proud to show off the empty plate with just a few crumbs on it to everyone.

Boy did that kid get a haul - seriously. Her Auntie Tash bought her a CAR - i wish i was kidding. I'll have to post photos of this thing, its fully electric, so she can push the pedal and it just takes off. Luckily it comes with a steering handle at the back as well as the steering wheel, so daddy can direct her around the yard, otherwise, who knows where she might end up! She LOVES it. She also got a fully stocked playdoh table which is such a hit (mummy and daddy did good on that one ya'll!), a kitchen with pretend food, pots pans and other bits that she has been dragging all over the house ever since, and so much other stuff! Books, clothes, dress up clothes, little toys, bubbles, drawing books, and other bits and pieces that I can't even remember, but will be finding for weeks to come!

We hung around the house for a couple of hours and then realised nobody had thought to give Lucy breakfast (whoops breakfast at 10am - was waiting for child services to arrive!), so she scarfed down some cereal and off to nanny and poppy's house to do Lunch with everyone, and of course MORE presents!

Despite how excited Lucy was, and how much fun we had with her, Christmas this year was surprisingly relaxed and quiet. I managed to have only one fight with my grandmother, (that's a WHOLE 'nother post), and otherwise, it was very relaxed and casual.

Christmas day this year marked 22 years since Matt's dad died from Cancer, and while I know, before we had Lucy Christmas was generally a sad day for him, having Lucy seems to have brought some of the Joy back into it for him. Just another reason we're so grateful for our girl.

We had a great day. And we're hoping, that 2010 and will bring some great things for our family.

Sunday, December 20, 2009

My emotional status

varies on a day to day basis, but generally, I think I'm doing ok.

My last post was depressing. It was utterly true, but still, depressing. I don't realise how many amazing people I have around me, until I start feeling sorry for myself and then suddenly, people start poping out of the woodwork, saying things that make me cry, and just being their wonderful selves.

Since we found out about Bean's various issues, I've spent such a large amount of time on Google - Dr Google for sure, but also looking to connect with people who's children are or have been through what we face. Since then, I've been privledged to be contacted by some of the most supportive women from all over the world, who have been through, and still are going through the same diagnosis' as we are.

An amazing woman named Chantel, who has honestly kept me from going insane, despite the fact that she lives on the other side of the country and we will probably never meet. Another amazing woman named Heidi, who's daughter is such a miracle, Colleen, who has shared so much of her story with me, and been a positive influence on me just by being honest and open. Catherine, who was treated so badly by the medical staff but still has a miracle child despite the adversity. These women and I will probably never meet. Two live in the USA, two are from Australia but live a great distance away. But they have given me hope. Their stories show me that just because a doctor says "terminate", "Incompatible with life", and other terrifying options, doesn't mean that our babies will give up. It doesn't mean we should give up. There are ladies on the online birth club, who I will also never meet, who send prayers, well wishes and check in regularly to see how we're doing. We have friends who have never been closer, offering to babysit, cook, do anything they can to just help. We have other friends who just ring up to chat, and make sure we're doing ok. We have people praying for us all over the world. I have no right to feel sorry for myself because I. AM. SO. BLESSED!

Everytime I think I'm reaching breaking point, someone, comes through, and makes me realise I'm ok. And that I'm not as exhausted as I think. Every person manages to say something, or do something, to make me realise I can keep going, for another day, another week, or another month.

I think without all their support - without YOUR support, I really would fall apart. So thankyou, to anyone and everyone, who has ever said a kind word for our family, said a prayer for our Bean, or shared their story of triumph over adversity. Hearing the stories of how people survive, cope and move forward, with or without their precious children helps us. It really helps me.

And at the end of the day, I'm ok. Things aren't the way we want them. But God is control of that. And at the end of this moment, Bean is ok too. And we both have a lot of people to be grateful too for that.

Friday, December 18, 2009

Today I am just

over it. I'm exhausted. Not mentally or emotionally, although I'm pretty sure that's catching up too, but I'm actually, physically exhausted.

I managed to hurt my neck 5 days ago now, and It's still hurting me. While I'm upright, its barely an issue, but, that all changes as soon as I lie down. And I'm funny, I like to sleep laying down.

I can't see a physio because they won't touch me because I'm "high risk", and I need a letter from my obstetrician to say It's OK. Except HE, has dared to get a life and gone on holidays for two weeks, and I can't see him until Monday. The other obstetrician didn't feel "comfortable" in referring me so I'm back to heat packs and panadol. Not helpful.

But tonight, really, I'm just sick of everything. I'm sick of counting how many times Bean kicks me every two hours of the day to make sure his/her movements haven't changed. I'm sick of looking into the nursery I should be SO EXCITED to be putting together, and seeing boxes and storage crates that i can't bring myself to move, just in case....

At this point, Bean is the proud owner of a box of newborn nappies, that won't fit for months, about ten summer jumpsuits, and one blanket. We have a cradle, a pram and a rocker. We also have a cot, purely because its the one we used for Lucy.

That's it. We have nothing ready for this baby, and what we do have is all crammed into the junk room, waiting for me to go in there and set it up. Get it ready for the baby. I feel robbed that I can't get excited about setting up the nursery. I'm angry that picking baby names isn't exciting, because we have to keep thinking that we might use it at his/her funeral. I feel like my pregnancy has been stolen from me. I don't get to do the fun stuff, because we don't know what's going to happen today. I never knew the future with Lucy, I was scared, apprehensive and worried, when I had no reason to be. Now i feel like that all the time, and It's worse because there is a reason.

I try not to feel sorry for myself with all that's going on. I've been trying to stay positive, Bean is still with us, and I'm not giving up on him/her. But I think the lack of sleep, and everything else, is just getting to me. Because tonight, I just want to sit on the lounge and cry. I"m cranky. I'm emotional and I'm sure I'm going to say something I regret if I dare open my mouth and actually have a conversation with anyone. Which is why I'm infinitely happy to be home alone at the moment.

I'm just so tired. Tired and emotional for me is not a happy outcome.

I hope I manage to doze off before Matt gets home or I might find myself divorced by morning because I'm so bloody angry. And It's not even at him.

Monday, December 14, 2009

"Just Practicing Mummy"

was what Lucy said to me on Friday afternoon. Of course, her saying that had me dissolve into tears, because she was "practicing" looking after her baby "for baby bean".

I've tried to explain to her that Bean is not feeling very well, and that he might have to stay in the hospital for a little while after he's born. But she just keeps standing in the doorway to the nursery telling me that he'll sleep in there. She's so excited about Bean. She can't wait for him or her to arrive, to get to be the "big sister", and to finally be able to show off "Her Baby".

It breaks my heart that she just doesn't know what we're facing. Some days I think that I'm fragile, but looking at my little daughter's face all lit up as she tells people about Bean, makes me realise that if this goes bad, her life will be changed forever. I don't want to change her life, I want to keep her small, and innocent, and happy and joyous. I want to protect her. There are too many kids in this world facing things that are unthinkable. I don't want to expose Lucy to any of that. But I might not have a choice.

Thursday, December 10, 2009

Dear Bean

Dear Bean,

23 weeks ago, I got out of bed, went for a shower and realised my boobs were sore. 23 weeks ago, I waited for your daddy to get into the shower, before digging out the last pregnancy test, and then taking it. 23 weeks ago, we finally, after 6 months of trying with ovulation kits, got our "pregnant" response. 23 weeks ago, i gave the pregnancy test (lid on of course!), to your big sister and told her to give the "special pen" to daddy when he got out of the shower.

The look on your daddy's face was amazing. I'll never forget it. He climbed straight back into bed with us and just cuddled us and laughed. I laughed too. I couldn't believe it finally had happened. Your sister Lucy just thought we were nuts, but we like to laugh in this house, so she joined in.

We've known about you for 23 weeks. But you've been there for 26. As selfish as it seems, I got my pregnancy to enjoy. I never got to enjoy being pregnant with your big sister. I was too scared of what might happen to ever sit back and really enjoy the time I spent with her before she arrived. But once she was born I realised what I had missed out on, and I wanted to experience that pregnancy where I could be just happy to be pregnant. To be carrying a baby inside me, while he or she grows and develops.

The first few weeks just flew by Bean. We didn't tell many people you were there, but those we did tell have been praying for you from the start. You have a lot of people on your team, more, maybe, than most people have in their entire lives. People from all over the world have been praying for you since the day we found out you were there. I think that's a very good thing, because with out those prayers, who knows what might have been. I'm quite sure however that you, my Bean, would not be kicking me in the ribs as i write to you.

The first time we thought we might lose you, was very early in the pregnancy. Just two weeks after we found out about you in fact. I spent a little bit of time in the hospital and we got to see you on an ultrasound. Truthfully, there was not much to see. You were just so tiny you looked like a shadow on the screen, but there, plain as day was your flickering heartbeat showing us you were in fact, hanging in there. At that point, I thought I'd never been so relieved! The doctor made me have all sorts of blood tests to keep an eye on you over the next three week, as well as referring me to have another ultrasound a little bit later, to make sure you were growing big and strong.

We had a lot of scares with you early on. By the time you had been growing for just 16 weeks, we had seen you on an ultrasound 7 times. Most mummy's and daddy's only get to see their baby on a screen twice by that time! But once things were OK after that scan at 16 weeks, we figured we'd made it and could relax. This is when we told your big sister all about you, that you were growing in Mummy's tummy, and that one day, in a long time, Mummy and Daddy would go to the hospital and bring home a baby. Your sister loves you very much, but she would very much like you to be a girl. Don't worry though, I'm sure we can show her all the fun things she can do with a little brother, if you turn out to be a boy. And I know she will be so proud of you, no matter if your a boy, or a girl.

I'm guessing your a cheeky baby Bean, because wow you keep us on our toes. Just two weeks later we had the scariest ultrasound yet. The doctors told us you were very sick, so sick that you might not live. He told us lots of big words, said things that didn't make much sense at the time, and tried to nicely tell us you would be going to heaven, probably very soon. We were so upset. It didn't seem fair that our baby had to face even more hurdles, after we had just started to relax and think things were OK again. Daddy was very angry at the doctor for trying to push us into making a decision that we didn't want to make. Mummy was just too upset to do anything but cry. We both love you so much and couldn't imagine having to send you to Heaven with Jesus and the angels.

We told the doctor that we would come back another day and see him again, that we were too upset to make any decisions that day and that we would go home and think about everything. The whole time we were at the doctors you were kicking and jumping and tumbling about inside my tummy, which made it even harder to believe you could be so sick. The doctors had told us that you would go to heaven, probably before 24 weeks, because you were too sick to keep going for more than a couple of weeks.

Your daddy and I talked for a very long time about you, and we decided that since you came from God, it was up to God to decide what would happen next. We told the doctors a couple of days later that we didn't want to do anything that might hurt you, like some of the tests they wanted to do could. We decided to come to the hospital every couple of days and just watch you and see what you were doing. The doctors told us lots of times that you wouldn't make it, that you were too sick. We told them to just keep watching, that we understood that you might go to heaven but we just wanted to watch and wait.

And then you started to get better.

At every ultrasound, you were looking much the same, no sicker, but no better. But you move and dance and jump so much, which the doctors kept saying was a great sign. That if you suddenly got too sick you would stop moving to conserve your energy. You never stoped moving. Even during the ultrasounds you were dancing away, making it hard for the doctors to measure and check you each time. And then one day, at one scan, you suddenly seemed to be getting better. The fluid around your heart had moved away, and was disappearing. Your blood flow around your tiny body started regulating.

Of course, the only scan you Daddy has ever missed, since we found out about you, was the one where we got the GOOD news that things looked to be getting better. Your a miracle Bean, because not a single doctor could explain how that could be happening.

And then you reached your next milestone. Together, with Daddy and your sister Lucy, we laughed as we realised you'd made it to 24 weeks. All the doctors said you'd be in heaven by now, some even acted like we were cruel for not letting you go earlier, for choosing to wait and watch. How different it was at the next scan, because now that you've reached that magic milestone, all the doctors want to help you get better!

Today, as I'm writing to you, You've been inside me for 26 weeks. The doctors think that because your heart is now enlarged, you might be getting a little sicker again, however at the ultrasound we had yesterday, apart from your heart you have never looked better. God is looking after you my Bean, which is fantastic because as much as I love you, and your Daddy and your Sister love you, we can't make you better. I'd give anything to be able to make you healthy, to help you grow and stay inside for another 14 weeks until your finished cooking, but whats safest and best for you, might be to bring you into the world early, so the doctors can start you on medicine that will make you all better.

The medicine might scare you a little bit. Because you will still be so little when your born, they have given me some medicine to help you grow stronger, faster. Yesterday they gave mummy a needle, which didn't hurt too bad until much later on. The needle had steroids in it to help your lungs grow faster, and I think you really really like the steroids because you haven't stoped jumping about since I got them. And the good news, Mummy gets more steroids today! So get ready Bean, its going to be like a party of fun for you.

The medicine the doctors have to give you will be in needles as well. I'm sorry in advance sweetheart that you will be poked, prodded and no doubt hurt right after you arrive in this world. It will be very scary for you and you will be very very small. But Daddy will be with you, the whole time I promise. Mummy will have to stay in another part of the hospital for a little while, but as soon as the doctors say It's OK, I'm going to come and be with you as well. It's not fair that you have to go through all this, when your so tiny and new. You should be spending your first minutes in my arms, meeting me and getting to know your new world, not having tubes taped to you, and needles going in and out. It's going to make mummy and daddy very sad to see you like that, and your big sister Lucy might not come visit you for a little while, because she might get scared. Once the doctors say its OK though, you can meet Lucy, and your grandma's and your grandpa, and maybe some other special people who love you so much, even though your not in the world yet.

Bean your going be meeting mummy and daddy much much earlier than I ever dared believe, but don't be scared. There are lots of doctors all ready to help you, and even though it will hurt a little bit sometimes, and there will be lots of tests, it will all be worth it when you get to come home with us, and be part of our family, and part of our home. Its important you stay strong and fight, because we're not giving up on you, ever. If God wants you to go to heaven and be with the angels, then that's what will happen, but I promise your not going without a fight.

I can't wait to meet you Bean, to see if you are a boy, like everyone think, or if your going to surprise us all and be a girl! I can't wait to see what your face looks like, in real colour, not just on a computer screen. And I can't wait for you to meet your Daddy, and your big sister. Most of all though, I can't wait to have you in my arms, healthy, and ready to live out your life with us, your family.

I love you my Bean, stay strong for just a few more weeks sweetheart. You've done so well, and I'm so proud of you. Just a few more weeks Bean. Please.

Love Mummy xo

Saturday, December 5, 2009

If the past wasn't the way it was

how different would I be in the present, and the future?

Some things that happen, change your life, forever. At the end of the line, you have to decide, if your going to let it change your life, for the better, or for the worse.

I've never felt guilty. I've never felt, deep down, that my miscarriages are my fault. I don't feel responsible. I don't feel like I could have stoped them, or that if I had just done something, anything, differently, that my babies would still be here with me.

If i hadn't lost those three much wanted, tiny babies, then I never would have fallen pregnant with Lucy. I wouldn't have her in my life. That's unimaginable. The thought of losing Lucy now, hurts more than the pain of those three babies that went to heaven combined.

We lost another baby last year. We wanted that baby so much. We decided we were ready, to risk it again, to try and have a baby. And we know all the statistics. We knew that if you can get your pregnancy to 9 weeks, and see a heartbeat, there is only a 5% chance that you will go on to lose the baby. After three other miscarriages, and then Lucy we thought our luck had changed. We took a chance, gambled and lost. Again.

If that baby hadn't gone to heaven, I wouldn't be pregnant with Bean now. And despite all the health problems our precious baby has, the fight he or she is waging every second to stay alive inside me, I wouldn't dream of not having this baby. Sick or not, it's my child.

I have no doubt that my past has changed who I am today. I'm more compassionate. I care more. I listen better. I physically ache when i hear something about a family losing a child. I can't watch the news and hear about a baby being hurt, and child being abused, without breaking into tears. I'm more sensitised to anything and everything involving children, and their parents.

Sometimes it really sucks to be the "go to" person when something goes tragically wrong with a pregnancy, birth or in a child. Somehow, word seems to have gotten around that I've been - to some point, "there".

"There" is nowhere i ever expected to be. When I was still in high school, I could never have imagined, that in 7 years, I'd be back supporting someone FROM school, as they laid their beautiful, sleeping angel baby to rest.

Being the "go to" is hard sometimes. I like to talk about what I've been through, and I like that, despite the heartache, my story and pain can help someone else. I'm happy to help people, and I know, without my past, I'd be essentially useless.

I know more. I care more. I help more. And as much as I'd like to say, that i wish those miscarriages had never happened. I know It's a lie. All that pain, has made me who I am today. It's made me the mother I am. The wife I am and the friend I am.

I can say though, I wish becoming who I am today, hadn't been so painful, and hard.

Thursday, December 3, 2009

Two Funerals

for babies, in one year. Its just not right.

The memorial service for Imogen will be held on Monday. Matt and I will attend to lend whatever support we can manage, hopefully, to show this shattered family that they can get through this pain together.

And if our journey ends like theirs has, suddenly, ubruptly and so sadly, I"m sure they will stand by us, like we will by them.

But still, Its just not fair.

Wednesday, December 2, 2009

I'm so angry

I could scream - but typical me, I just burst into tears instead. I'm so effective.

Matt applied for 6 weeks leave for after Bean is born. He applied for the leave well over two months ago, due to start Mid March 2010, before we knew Bean was sick.

His applied for leave compromised of 3 weeks annual leave, 2 weeks unpaid paternity leave, and 1 weeks unpaid leave. His boss just came back to him and told him that taking 6 weeks off is too hard on the company, and he can take 3 weeks paid leave, and then work from home for the other three weeks. Usually, an acceptable solution.

Except our baby is SICK. As in, our baby might DIE before birth, and WILL be born at this stage 10 weeks early. Guaranteed Neonatal intensive care time. Absolutely guaranteed. So working from home is not an option. A. We wont BE home. B. You can't use mobile phones and laptops in the NICU C. What happened to his contractually obligated two weeks unpaid paternity leave?!

I'm so angry. I literally just told him to hang up the phone and go tell his boss he gets his leave, or he resigns. There is no promises here! Our baby might not make it home, we're praying So hard, that that's not the case, but realistically - it could happen. Our baby might not survive this fight. And I'll be damned if I'm going to let some smug asshole decide how much time Matt spends with him or her.

Tuesday, December 1, 2009

Too Tiny, Too Soon

Imogen Clare. Rest in Peace princess, you held on for as long as you could, and your Mummy and Daddy just don't know what to do without you.

Pray for the Tobbler family, today they had to plan their daughters funeral.