9 Week Scan

Well, thought I would give you a quick update about my 9 week scan, which I had yesterday. Everything went fine. Bubs is growing nicely....he/she is now 30mm long. We even saw bubs wiggling, which was a very nice surprise.

My consultant was very happy. My next appointment is in 2 weeks time, when I will be 12 weeks exactly, with the fetal medicine doctor. I'll let you know what the outcome of that appointment is, hopefully we will have even more good news!

I'm hoping to try and post some scan pictures soon....if I can sort out the scanner!!

Cheerio for now xx

More than the winter blues...

This week has been particularly difficult.

First off, we attended a requiem mass on Thursday for all those who have passed away in the last year at our church. They announced that the oldest person to die this year was 91 years old, and the youngest was my daughter, at 28 weeks gestation. My husband was collared to do the readings, which took him by surprise to say the least (!), while I spent most of this mass in the porch as my son wouldn't stop talking so I had to take him outside so that he wouldn't disturb the mass!!

Secondly, today is 6 months exactly since my daughter was buried. We again went to visit her grave. When we got there another mum, who is a regular like us, was there visiting her baby boy. We stayed for a short while, before going home.

To top it all off, it's absolutely FREEZING today! Apparently, it's going to get colder....great:( Actually, I prefer the cold to the hot, although maybe not quite as cold as this!!

Anyway, I'm due my next scan on Friday. The nerves are creeping back in (although they never actually go away). I'm hoping and praying that all goes well. I'll keep you informed...........

7 week scan.......

Today I went for my 7 week scan (well actually I'm 7 weeks and 4 days today).

I can definitely say that I didn't sleep a wink last night and was a total wreck this morning. When I got to the hospital I started crying before I even got in the scan room. I think the receptionist thought I was mad or something!

We went into the room and it felt like ages before the scan actually begun. I really thought that there wasn't a heartbeat, but then the sonographer turned and said that it was very good news, there is a heartbeat and everything looks absolutely perfect. Thank God! My consultant, a fabulous woman who made a heartbreaking and impossible situation somewhat bearable, came with us for the scan and, I think, was a s delighted with the news as we were!

So now I will have a scan again in 2 weeks time, and if all is alright then, then probably 2 weeks after that. We're trying to keep this pregnancy as normal a possible, but are mindful that we need to keep a very close eye on things.

Well, I'm back at work now, and it feels as though I've never been away. Things are really hectic and it's going to be difficult to tell them that I'm pregnant again, esp one of the managers who has been telling me that she doesn't want me to ever go on maternity leave again! But it's tough I'm afraid. This too is a very much wanted baby, and they're going have to deal with it!!

I'll check in again soon, when I have something interesting to update you with!!

6 Months on.....

Today is 6 months since my baby girl passed away. It's been quite difficult to say the least. We visited her grave, which is something that I hate to do but feel that I must. As usual we cleaned up and laid fresh flowers while my son helped - he loves to help clean up and talk to his baby sister. I find it really difficult when he asks her to wake up or when he blows her a kiss goodbye.

I've found that time has flown by. It seems like only yesterday that everytihg happened. I'm going back to work on Monday. It's been 8 months since I was there, and I'm not looking forward to it at all!

Sunday will be 6 months since my baby was born. We'll visit her again. Our angel will always be part of our life. No matter what happens, we will always make sure she is looked after.

xxx

Hydrops Fetalis Community Forum

I've been following a forum for a while now, details are as follows: http://www.hygen.net/hydrops-fetalis/viewforum.php?f=3

I'ts a great source of information and support - all of which is given by families who have gone through similar situations to mine. It is also a good source of hope and there are some success stories on there too.

I really hope you take a look at this forum, it's great!

My story........

I'm new to blogging. I've read a few in the past, but never actually created one myself. I've found, from my limited experience, that blogs can be very helpful to people out there. They offer comfort to those who feel alone. They can also be a great source of information.

I've decided to set up this blog to reach out to those parents who have just been given the devastating news that their precious unborn baby is suffering with a serious condition called Hydrops Fetalis. I'm hoping that this blog will evolve into something that can offer support and advice, both from myself and other's out there who have experienced, or are experiencing a similar situation to mine.

So to tell my story (I should warn you that this is going to be a very long post)......................

First I should begin by telling you that I have a beautiful boy who is 2 1/2 years old. He is a complete monkey - a typical boy! Into everything, never sits still and NEVER stops talking. He loves Dinosaurs and Super Why. He also loves to read and draw. He is fabulous in every way. He is my first child.

I found out I was pregnant with my 2nd child (although I have had 3 previous miscarriages) in November 2007. Everything progressed smoothly. My first scan at 7 weeks showed a heartbeat, and my next scan at 12 weeks showed that everything was fine.

Then, at 19 weeks I woke up to find a small amount of spotting upon visiting the bathroom. I totally freaked! I rang the hospital straight away and they told me to come in so they could take a look.

When I arrived at the hospital the midwife listened to the baby's heartbeat - perfectly normal, and strong. But for the fact that my husband kicked up a fuss, they would have sent me home without having a scan first! So to the scan room........

I'm lying there, relived that there was a heartbeat, and assuming that the scan was a formality. I then start to become worried as the sonographer is taking longer and longer with the scan. She eventually turns to me and says that she has found fluid in my baby's chest cavity (both sides), and that she would need to refer me to a consultant. She also tells me that my baby is going to be a girl.

Before I know it I'm being seen by a consultant. She has a look at the baby and tells me that she has bilateral pleural effusions (fluid in both sides of her chest). She informs me that this condition is potentially very serious and that they would need to send me to a very prominent children's Hospital for a detailed scan of my baby's heart. They give me an appointment for 2 days later.

2 days later and we are at our appointment. The doctors are very friendly and very efficient. Silence in the room as the scan is carried out. My husband can see everything, and I, as usual, cannot see a thing! The scan is finished and the doctor turns to inform me that my baby's heart is fine, and that everything appears to be functioning as it should. He does not believe the effusions are being caused by the heart. He does note a significant mediastinal shift to the right, which has been caused by the fluid.

So, back to our hospital with the results 5 days later. We are scanned again. My baby's condition is deteriorating so that now she has fluid in her abdomen (ascities) and moderate swelling in the skin around her head. I'm totally devastated, but determined to carry on. They then take blood samples from me to check for infections etc. The consultant - a very negative man who is hell bent on my 'terminating the pregnancy', informs me that if the hydrops is not caused by an infection then it is most likely genetic in nature and the prognosis is dire. He says that we should wait for the blood test results and then take it from there.

1 week later and we're back at the hospital again. The blood test results are in - negative. Things go from bad to worse as my daughter's condition worsens, along with her prognosis. We ask what the next course of action is. Again we are offered the option of 'termination' - not a chance in hell!! We are then told that the only treatment that is available is to insert shunts (drains) in to the baby's chest through my abdomen. There is a risk of miscarriage with the procedure, but this is our only option. We are given an appointment for 1 week later at another hospital.

Our appointment arrives and in we go for yet another scan. The consultant takes a look at the baby and informs us that there is an 20% chance that our daughter will survive with the shunts, and 100% chance that she will die if we don't have them. No prizes for guessing what decision we made!!

Ahead with the procedure....A large sharp instrument (which I can only describe as something that looks a bit like a letter opener) is inserted into my abdomen under local anaesthetic and through to my uterus. It is then pushed through into my daughter's chest before 2 drains are inserted (one on each side of her chest). The procedure takes about 5-10 minutes. Done. We are then sent home and told to return to our local hospital in 2 weeks time for review.

At review 2 weeks later it is found that my daughter's condition has deteriorated and that, in the consultant's opinion, the shunts have not worked. That's it as far as he is concerned. Not for me though! After researching on the net I stumble across a doctor in Denmark who has experience in this field. I contact her for advice. She tells me to get in contact with a doctor in London. He is the world's leading expert in fetal medicine, so if anyone can help, he can.........

So we are refered and given an appointment for a few days later.

We attend our appointment and again are scanned, this time by about 4 different people. They are all amazed at the amount of swelling my daughter has and are surprised that I am not suffering with any swelling or polyhydramnios. They refer me to the Professor. After waiting for hours, we get seen. He takes a good look at my baby, then turns to me and says: "Do you want to do everything no matter what?" We reply yes. He then says that he will re-do the shunts.

So the procedure is carried out again. This time, for some reason, it is different this time, and it makes me feel quite ill - to the point wherre I actually throw up!

We are sent home and asked to return in one week for review.

Our next appointment arrives. We wait anxiously for ages before being called in. I lie down on the bed and get ready for the scan - I'm now a total expert at this! The doctor starts to scan me. He then turns around and says "it's a miracle!". The fluid had almost completely gone, in just one week! There was a minute amount of swelling around my daughter's scalp, but that's all. This news greatly improved my daughter's prognosis, and we were informed that the cause of the hydrops was most likely mechanical in nature (although genetic syndromes could not be completely ruled out). We were asked to return in 2 weeks time for review.

2 weeks later and we are back at the hospital - bad news. It appears that the fluid is reaccumulating. The doctor believes that the shunts may be blocked - AGAIN! Not only this, but the blood flow in the umbilical cord is intermittent and they are worried about my baby's size. They inform me that I will need to return in 1 weeks time for review. If the fluid has gotten worse, then shunts will need to be done again. If the blood flow has stopped, the baby will need to be delivered.....

Now to the worst day/night of my life.................

On a number of occasions since this journey began I went to my local hospital because I was worried that my daughter wasn't moving. Everytime she was fine.

The morning of my last appointment I again felt as though my baby had not been moving, so I went to my hospital to get checked out. They listened to her heart then scanned me and said she was fine. Her heart was strong and she was moving. I'm told to keep my appointment for later that day.

So to our appointment. I'm scanned again, and bad news is delivered. The swelling is getting worse and the flow in the cord has stopped. Also, our daughter has stopped growing. We are told that the shunts will need to be done again, and that delivery is not an option. So we are prepared for the procedure.

Prof takes a look at my daughter and is concerned about her heart rate. She apparently has a bradycardic episode which sponateously recovers, so they are happy to continue. The first shunt goes in fine - no problems. The seconed shunt goes in, and an air of uncertainty develops. My daughter's heart rate drops significantly. I'm told that this is common and should resolve. I'm sent off for monitoring. The midwife attaches the CTG monitor to me, but has difficulty in locating a heartbeat. She eventually finds one - 55bpm. She takes me back to the scan room to be re-scanned. The professor returns and announces that the baby requires emergency resuscitation. Blood will need to be taken from me and transfused directly into my daughter......they begin. A needle is passed through me into my baby's cord and blood is given with no luck. The needle is then placed directly into my daughter's heart. Her heart rate picks up momentarily, but then drops. The procedure is stopped. No blood is flowing through the cord or to the brain. My daughter is dying and there is nothing that can be done. We watch on the screen as her heart contracts slowly, the monitor is then turned off. Amidst all of this I, my husband and in fact the whole room became covered in blood - I'm not sure how. The room went from about 30 people (mostly spectators) to just me, my husband, the midwife and a doctor.

We are told that labour will need to be induced the next day. We go and see our consultant at the local hospital. She gives me a tablet and tells me to return the following day. So we return to the hospital. I'm given my first dose of Prostin gel. 6 hours later- nothing. Another dose is administered and I'm allowed home to tuck my son into bed. The contractions start. By the time I get back to the hospital they are getting bad. Before I know it, I'm 6-7cm dilated. I'm given an epidural, thank God!! My daughter was born still at 04:24am on 09 May 2008. She weighed 2lb 5 1/2 oz, and she was beautiful. We held her for ages before she had to go. Then we go home............

So here I am now, 6 months later, writing this blog. It's been difficult getting here, but I have. I've had many down's and not many up's, but that's how it goes I suppose. My son has definitely been my saving grace through all of this. Without him I don't know what would have happened.

Now to my good news - I'm pregnant. I'm 6 weeks gone and due on 29 June 2009. I'm a bag of nerves. I'm desperately afraid I'm going to have another miscarriage, or worse still, another sick baby. But no matter what, I will see this pregnancy through to the end. I've been told that there is a 20% chance that I could have another hydropic baby, please God let this baby be in the 80% that won't...........