Wednesday, October 28, 2009

all I can think about tonight,

is HOW do we tell Lucy, if Bean doesn't make it.

Tuesday, October 27, 2009

and again, we wait

because, our much hoped for parvavirus B19 positive, was in fact, a negative.

I can't believe what a turn this pregnancy has taken. It doesn't feel real. It feels like a dream, and I'm still walking around in a daze. I think, i might, actually be in shock. I forget mid conversation what I was talking about, i start a sentence in my head and finish it verbally, leaving people looking at me like I'm mad.

And maybe I am. I don't feel like me anymore. I don't feel rational, kind, outgoing and friendly anymore. I just feel cranky. All. The. Time.

At our scan yesterday they saw that the blood flow is up again, to what it should be, but not enough to panic, at least not today. The fluid has moved down away from the lungs and heart which is fantastic. So we remain stable. The bowel is still a little "bright", whatever that means. But otherwise Bean is very active and our wonderful obstetrician says we can continue to hold off on an amnio while bean stays happy.

So now we wait. We have another level II scan booked for Thursday afternoon. *sigh* Still praying and hoping for a miracle. Hope you all are too.

Monday, October 26, 2009

What We're Looking At:

Cytomegalovirus (CMV)

"Pregnant women CMV causes brain damage in the human foetus, particularly in the earlier stages of pregnancy when internal organs are forming. If a baby in utero is exposed to the virus via the infected mother, they can suffer from hearing loss and mental retardation. Some babies stop growing as quickly as they should and experience developmental problems in affected organs, such as the liver. There is no risk if a baby catches CMV after being born."

Thankfully - This has now been ruled out, I show no signs of EVER having been infected which means its impossible for this to be what is wrong with Bean. Thankyou God!


"Babies exposed to toxoplasma before birth can have damage to their brain, ears, eyes and liver. Signs of damage may be present before birth (eg changes may be seen on ultrasound testing), or at birth, but they also may only become obvious later when the child is found to have hearing loss, vision problems or developmental problems. Toxoplasmosis can also cause miscarriage. "

This virus has also been ruled out as the cause of Bean's aneamia. I have also never been exposed to this, so once again, it is impossible for Bean to be suffering with it.

Parvovirus B19 -

Resulting in - Hydrops fetalis
Parvovirus infection in pregnant women is associated with
hydrops fetalis due to severe fetal anemia, sometimes leading to miscarriage or stillbirth.[13] The risk of fetal loss is about 10% if infection occurs before pregnancy week 20 (esp. between weeks 14-20), but minimal after then. Routine screening of the antenatal sample would enable the pregnant mother to determine the risk of infection. Knowledge of her status would allow the mother to avoid the risk of infection.The risk to the fetus will be reduced with correct diagnosis of the anemia (by ultrasound scans) and treatment (by blood transfusions). There is no evidence to suggest that Parvovirus B19 leads to developmental abnormalities in childhood.

THIS IS WHAT WE'RE PRAYING IS WRONG WITH BEAN! A relatively minor illness, with no associated birth defects. A blood transfusion would assist bean to get over this virus, but might not even be required in this case. Please God let this be the problem. We will not get the test results back for this until 4pm today, and the waiting is killing me.

The more serious, and complicated causes we could also be looking at with Bean are:

Trisomy 13

"Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers and/or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year"

We've been told if it is this - we should terminate. We won't. But that's the advice we've been given.

Trisomy 18 (Also known as Edwards Syndrome)

Infants born with Edwards syndrome may have some or all of the following characteristics: kidney malformations, structural heart defects at birth (i.e., ventricular septal defect, atrial septal defect, patent ductus arteriosus), intestines protruding outside the body (omphalocele), esophageal atresia, mental retardation, developmental delays, growth deficiency, feeding difficulties, breathing difficulties, and arthrogryposis (a muscle disorder that causes multiple joint contractures at birth).[8][9]
Some physical malformations associated with Edwards syndrome include: a small head (microcephaly) accompanied by a prominent back portion of the head (occiput), low-set, malformed ears, abnormally small jaw (micrognathia), cleft lip/cleft palate, upturned nose, narrow eyelid folds (palpebral fissures), widely-spaced eyes (ocular hypertelorism), drooping of the upper eyelids (ptosis), a short breast bone, clenched hands, underdeveloped thumbs and or nails, absent radius, webbing of the second and third toes, clubfoot or Rocker bottom feet, and undescended testicles in males.[8][9]
In utero, the most common characteristic is cardiac anomalies, followed by central nervous system anomalies such as head shape abnormalities. The most common intracranial anomaly is the presence of choroid plexus cysts, which is a pocket of fluid on the brain that is not problematic in itself but may be a marker for Trisomy 18.[10][11] Sometimes excess amniotic fluid or polyhydramnios is exhibited.[8]

Again, if this is the diagnosis, so far, each and every doctor, has advised we terminate the pregnancy. Again, not an option, but the recommendation.

Down Syndrome

Down syndrome is set of mental and physical symptoms that result from having an extra copy of chromosome 21. Even though people with Down syndrome may have some physical and mental features in common, symptoms of Down syndrome can range from mild to severe. Usually, mental development and physical development are slower in people with Down syndrome than in those without it.
People with the syndrome may also have other health problems. They may be born with heart disease. They may have dementia. They may have hearing problems and problems with the intestines, eyes, thyroid and skeleton.
The chance of having a baby with Down syndrome increases as a woman gets older. Down syndrome cannot be cured. However, many people with Down syndrome live productive lives well into adulthood.

I have nothing really to say about this. Its a permanent, often disastrous condition and it breaks my heart to think that this might be what is wrong with our bean.

Keep praying for Parvovirus - its the only thing i think i can handle right now.

Thursday, October 22, 2009

I've moved into Hell.

Yesterday, I was a normal, pregnant lady. Sure we had a few complications, but I was, essentially, pregnant, and normal. Like all the other pregnant women out there.

Today, I'm a wreck.

I want to be a normal pregnant lady again.

It feels like a dream. I feel like, It's not really happening. I don't know if that's a coping mechanism, but I don't know if I like it. I wish i felt numb. Because that would mean i was feeling something - anything. All I feel is disbelief, denial and regret. I just cannot believe it.

In one second, I think, I'm OK. I think to myself, there is no time to waste, we need to get this baby treated - call the hospital, do the amnio, do the transfusion. In the next second I'm thinking, maybe it will get better on its own. And then, in the next second I'm crying and praying that this isn't happening. I'm not ok. I'm about as not-ok as i can ever imagine being.

I'm so confused. As far as I can tell, there is only one, ONE thing, that this baby might have, that can still result in a perfect, normal, happy baby being born at full term. And that's Parvovirus B19. IF that's what Bean is suffering with, then a blood transfusion, in 90% of cases will fix him/her right up, and all will be right with the world once more.

However. That virus accounts for only ONE of SIX serious things we've been told can be causing the anemia.

I'm terrified. I want my baby, I want my baby so much. But I want my baby to be healthy, to be whole. I want my baby to live life, not to just exist in it. The thought of my baby being blind, deaf, with significant brain malformations terrifies me. I'm not strong enough to do this!

I'm not strong enough for all this. A person can only take so much, and I'm over my limit. I just want it over, all of it. If our baby wont live then please God, end it now. Because i swear, I'm half a step from a nervous breakdown and I just can't keep doing this. I can't.

Wednesday, October 21, 2009

Now there is something else to worry about...

The formatting sucks, it hasn't been well thought out but its raw and its copied direct from my facebook page. Its purely informative. More to come. xo

Firstly, to our family and friends who are praying for us, and thinking of us THANKYOU, and please keep doing so. Our situation at currents stands like this. Baby is anemic. For bean, this means that the blood flow too and from his/her vital organs is too fast, causing fluid build up around his/her lungs, and abdomen. THis is not a good sign, and it one that is likely, and able to get worse, and to get worse fast. The anemia can be caused by a few different things, most notably, a viral infection that somehow passed me, but has made bean sick, resulting in this, or a severe and as yet un-noticeable chromosonal abnormality (trisomy 13, 18 or Down Syndrome). If the baby is sick becuase of a virus, or from Down syndrome, in the very near future, he/she will need to have a blood transfusion. This carries significant risk for Bean, but also for myself. The risk to myself is not a concern to us, or me, at this point in time, we are only worried about Bean. Before we can have the blood transfusion done, there has to be an amniocentesis performed to figure out what exactly is causing Beans anemia. For those who dont know, an amniosentisis is where the doctor puts a needly through my belly, into my uterus to take a sample of the amniotic flluid that bean is swimming around in. By testing this they can find out everything about a baby, including viral illness's, and any chromosonal problems. Both the transfusion, and the amnio carry small but significant risks of miscarriage, which is why at this point - given our history, we are chosing to tread carefully. If it should turn out that Bean is diagnosed with either Trisomy 13 , or 18 - the obstetrician will push for a termination. These two conditions are "incompatible with life" which is heartbreaking for any person to hear. WE ARE NOT GOING TO TERMINATE. We need to make that very clear. Our baby will stay with us for as long as God wants, we will not decide to end his or her life. Currently, our plan of attack (as it were) is to have another high resolution ultrasound on Friday, to check out the fluid levels, and reasses the blood flow to major organs, particularly the brain. Providing, all is going well, we will have another scan on Monday. At this point, we are likely to have to decide on the amnio and transfusion. If by Monday there is ANY improvement in Beans condition, we may be able to safely hold off on both courses of action without any detriment to his long term health (if bub has Trisomy - obviously this will not change - the diagnosis will still remain a high risk of pre-term fetal death and we will have to fight VERY HARD for them to perform the transfusion should we want it, and bean need it again, later in the pregnancy) We do appologise for all the missed text messages and phone calls. Tonight for us, is about making some tough choices and hoping that as parents, they are the right ones. We dont want to do anything that will hurt our baby, but we just can't know what the right answer is. If you could pray for us for wisdom, that we can make the right choices, that would be awesome. On an end note, This is the easiest way we know of to spread the word, without having to physically call everyone, we'd love to talk to you all, but there is just to much other stuff going on. We're hoping to get some rest tonight, and to wake up with a better perspective on whats happening. In the meantime, we have to wait. And hope and pray. Thanks for all your support, your tears and your frustrations. Its lovely to know we have so many people who care enough to feel emotional for us. xoxoxo

Tuesday, October 20, 2009

It doesn't take much

for the old fears to come flooding back. Although when I say fears, that implies that the fears I have, I had once before. Which isn't entirely correct. I've posted here before about my battle with undiagnosed post natal depression after i had Lucy. I never saw a counsellor, I was never medicated, I never really realised what was wrong with me, until It was over. And then It seemed pointless to worry about it.

But at some stage, I need to accept the fact that very soon, in a few short months, I'll be having another baby. And I have to be ready to face the fact that, for me at least, another bout of post natal depression is very likely. Not because I'm pre-disposed to it, but because I never took steps to talk it through with anyone. At all. Ever. My husband, doesn't even know. I do keep meaning to tell him, but Its an awkward conversation, and somehow i just keep glossing by it.

I never hurt my daughter. I WOULD never hurt my daughter, but the incessant fear that I might possibly, in the very recess's of my mind, contemplate it one day, scared the shit out of me. It still does. I love that she's two because it means she's so much more independent. Having a totally dependent child, home alone for hours at a time, is a VERY daunting thing to me. It really really scares me.

I've already promised myself, that I will, at my first antenatal appointment talk to the midwives about what I felt, what I went through and any concerns I have. I fully intend to tick the "risk of PPD" box on the form.

But what scares me is that despite being proactive about it now, it still might not be enough. I hate the thought of going through it again. But there is no fool proof way to stop it. I just have to make sure, I have support from the get go.

I will get that support. I just want that to be enough, and I want the fear that it might not be, to go away.

Sunday, October 18, 2009

It felt anticlimactic

but, finally we told Lucy that we're having a baby. I don't know what i expected her to say, I guess really, she is only two and a half, it's a bit of an alien concept to her still!

It felt strange telling her. Last time I was pregnant, we told her straight away. Unfortunately, 6 weeks later it was all over, but she asked us for MONTHS where the baby was. This time around we agreed that we'd wait until she could feel the baby kicking.

She can't feel the baby kicking, not yet, but we started buying stuff, so we had to tell her, cause she was thinking it was all for her. The pram, yeah, that's OK, she can ride in it for now, but the cradle? Yep, i don't think she'd fit! She was eyeing it off for her dolls till we told her it was for the baby.

At which point she told me to be quiet, because the baby is sleeping. And then told me she wants a girl. No BOYS mummy, just a sister.

Boys can wear pink right?

Thursday, October 15, 2009

Sunday, October 11, 2009

I even shocked my husband

when i declared that this weekend - "I'm not leaving the house", and then, didn't.

Last weekend was chaos. Lucy went to a birthday party (of sorts, she was the only other kid but still - it was a party, just ask her!), we took her to meet and watch Dora at our local shopping centre, and then we spent the entire day on Sunday at the beach with great friends - an hour and a half away from home. It was a lovely weekend it really was. But WOW were we tired!

Then on Monday, at work, I was STILL tired. Lucy, predictably slept terribly both Monday & Tuesday nights, which left me feeling like I'd been hit by a truck by Wednesday. Still at work. Still half asleep.

I managed to catch up on a little sleep Thursday and Friday nights, but still declared this to be a no go type of weekend, for me at least. I was shattered!

Matt and Lucy ducked out yesterday to get some groceries, and I stayed put on the couch. Then today - i watched Bathurst.


Pregnancy has screwed with my head, because i spent the entire day on the couch watching car racing. What the hell!?

But i enjoyed it. I feel much more refreshed for my no-go weekend, and now, I'm off to bed to make sure I manage some sleep before the inevitable 5am wake up call.

I hate the fact that I soon will be unemployed, but gee i can't wait to not set an alarm for 5am every day!

Thursday, October 8, 2009

Complete 360's

are going on in my tummy. Bean sure has found his water legs this week. I've been feeling flutters and flickering in my belly for weeks now, since about 12 weeks to be exact but wow, there is some serious flipping about going on in there.

We had our 16 week check up scan at the hospital on Tuesday, and it went SO well. It looks like the amnion, while still not totally fused, is definitely fusing and sealing off properly, so, we can be pretty certain that Bean is going to be just fine. We've now had 7 scans of this pregnancy, and I'm still booked in for another one at 18 weeks, the biggy of pregnancy scans, the morphology.

I'm not worried about this one. Mainly because, we've had so many scans, and while the baby is too small to check out thoroughly for the complete morphology scan I've been reassured that anything major that would be found to be wrong with bean could probably have been picked up by now.

So three cheers for my healthy baby!

Saturday, October 3, 2009

When you wait long enough

for the other shoe to drop, usually, it falls heavily but not as heavily as if the drop is unexpected.

The company has closed down their print advertising media. In case you are not aware, this is the department I work for. Its the department my mum works for and it's the department some of my closest friends work for.

Effective from 30th October, there are 280 people, nationally, who will be retrenched from their positions within the company.

A lot of livelihoods are now on the line. I get paid out sure, and they payout is generous, but the itty bitty issue I'm having is that, my paid maternity leave - just disappeared.

I don't care about my job going, really. But it sure is going to be hard to find someone willing to employ me for 3 months, who then won't mind that i plan on taking off for possibly 6 months, almost before my probation is up! There is an excellent chance i won't find someone willing to take that chance on me.

I keep trying to tell myself that God will provide. But honestly It's not feeling like he's all that close right now. And since i can't even get my husband to talk to me about the redundancies (another story for another time), I'm pretty much living in Limbo.

The end of October is coming far too quickly.