My Life Abroad: The Adventures of Two Birds
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Thu
14
Mar '13

Baby Bird’s Update

Our 20 week ultrasound was supposed to be an exciting day, we had looked forward to it for weeks.  It was scheduled for valentines day and we had very high hopes for a positive outcome.  Our 12-week risk factor test for genetic problems had come back really good so we were anticipating flying through the 20 week scan  without a hitch.   We showed up in the morning for our scan and went through the process of the ultrasound with the technician – the baby seemed to be breach and turned over on it’s stomach so  they couldn’t get a good view of all the organs.  The 20-week scan is also called the anatomy scan, it is the time when the doctors look at the inner workings of the baby’s anatomy, are all the organs present, are they in the right place, hooked up correctly, etc. etc. 

Things seemed to be going well, we were asked if we wanted to know the sex and we said we did.  “It’s a girl”, she said, “congratulations”.  They started identifying the organs and we have a, quite long, DVD of our scan – but they were unable to get a good look at the heart and asked us to go walking the hallways to get the baby to turn so they could get a better view. When we came back there was a new doctor in the room with the technician, the scan continued.  It was at this time that we realised that there was something wrong… 

Following the scan we sat down with the doctor to discuss the situation and the implications therein.  It seems that what they could see was that there is one vertebrate that is malformed, more in the shape of a wedge than a block.  The doctor seems to think it is a very slight curve and that it could even be so slight that it may not be noticeable – this is one thing that we may not know the full extent of until after the birth.  It is difficult to see the extent during an ultrasound.  In addition the stomach had developed on the right side of the body (the wrong side), this in itself isn’t necessarily uncommon.  There are and have been many people that are born with organs that have developed on the wrong side of the body.  In fact, in the years before ultrasounds, something like this may not be known until someone has surgery or they may never know.  The stomach seems to be hooked up and working correctly even though it is on the wrong side.  Unfortunately, it is not as simple as “it’s on the wrong side but it’s okay” – in many cases when the stomach is on the wrong side, it can mean that there are other things wrong.  It can mean that there is also some heart problems or heart involvement that goes along with it – so because of this the doctor suggested that we try to do an amniocentesis to insure that there is not something that is causing these problems, something genetic, something bigger.  We agreed and proceeded with the amnio.

An amnio is something I never wanted to do.  It’s risky and after all our efforts in achieving an successful pregnancy I was so afraid that we could lose the baby just doing the amnio.  An amniocentesis is a procedure involving a long thin needle, that is inserted through the belly into the amnioiatic sac to withdrawl amnio procedure
the genetic material that surrounds the baby.  There is no anesthesia for this procedure because the size of the needle for the anesthetic is the same as for the procedure itself – so you just go without.  It didn’t really hurt and it was over quickly.  They keep the ultrasound on your belly so they can see where the baby is and they don’t get near it.  The risk is that the sac will burst and the baby will not be able to survive, there is a risk of miscarriage.  The results of the amnio comes in two stages:

1) FISH (Fluorescent In Situ Hybridisation) – FISH is a rapid method for counting the number of certain chromosomes within cells. It can be used on an amniocentesis sample to get a faster result. It is always followed by the usual chromosome test. A normal FISH test is about 98% accurate in predicting that a baby will have a normal chromosome result. The results from the FISH come back in 24-hours it checks for major genetic diseases such as down’s syndrome.

2) An amniocentesis is a procedure that allows a small amount of the fluid around the developing baby (amniotic fluid) to be collected. This fluid contains cells from the baby that can be tested for some types of birth defects.  The most common type of test done on an amniocentesis sample is a chromosome test. In some cases, tests for infections, spina bifida or other genetic conditions may be done.  All of the chromosomes are looked at individually and evaluated.

Our Amnio came back negative for any genetic problems.

On one hand this is a good thing, but I have to ask myself “then how do these things happen?” and that lead’s to the next stages of evaluation and doctors.

Due to the stomach condition possibly being related to the heart, we wanted to rule out any heart problems and we called in a specialist, a paediatric cardiologist that specialises in reviewing baby’s heart via ultrasound to look for abnormalities.  We had this appointment at about 23-weeks.  It was a long 2-weeks waiting for this appointment, but we wanted this certain doctor and we just had to wait it out for an appointment. It was a long ultrasound appointment and in the end the doctor met with us to discuss the results.

The diagnosis at this point is an anomalous drainage of the Inferior Vena Cava (IVC) into the Left Atrium.  To explain, the heart has a Single Ventricle Defect –  (IVC) inferior vena cava is a major vein that carries blood from the legs and abdomen to the heart. The inferior vena cava usually connects to the heart’s right atrium, but in Baby Bird’s case it is connecting to the left atrium of the heart. 

All blood enters the right side of the heart through two veins: The superior vena cava (SVC) and the inferior vena cava (IVC), the SVC collects blood from the upper half of the body. The IVC collects blood from the lower half of the body. Blood leaves the SVC and the IVC and enters the right atrium (RA). In the first instance this is not detrimental to the baby at birth, but if not surgically corrected there are many complications to follow with blood circulation in the body through life. 

heart

We don’t have our next appointment with the paediatric cardiologist until 32 weeks (7-8 weeks from now), at that point we will take another look at the heart and the IVC to see if anything else can be detected. We hope that the doctor will be able to see the IVC more closely and we will discuss our options after birth including surgical options.

For more information, I have attached a couple of journal articles regarding this specific abnormality.

https://www.dropbox.com/s/i8v5geic95xsfer/ICV%20diagnosis.pdf

https://www.dropbox.com/s/bqvcyfd0cv3rexn/IVC%20Article.pdf

I know that the post this time sounds a bit ominous but we have been given a positive outlook on the birth, that we will be able to make it through the birth and then the baby may be in hospital for monitoring while they assess the severity of the situation.  Ultimately if the above proves true it would be likely that we would proceed with some type of corrective surgery.  Our hopes are up and we are staying positive and although everything is not “okay” per se – we are focusing on being calm and waiting for the birth to see what our next steps are.  Your prayers and thoughts are welcome and appreciated, and we will keep you informed of our progress.

Tue
8
Jan '13

The Blessing of a Baby Bird

After 7 years of trying, and 3 years of hard core IVF, a couple miscarriages, and a few embryos failing to meet their potential… we’re finally PREGNANT! Embryo #5 is a success.

Having a child in my 40’s certainly wasn’t plan from the beginning and I still think that it’s going to be a scary road… but, sometimes things work out in different ways for a reason. My husband and I have been trying from the beginning but following my diagnosis of Wegener’s Granulomatosis in 2009 we’ve found that even the prospects of having a baby were going to be challenge, a risk, and may just never come true. My doctor actually discouraged us but we marched in protest – assured that we could find a way.

For those of you that know me, I’ve always been “motherly” – I love to take care of my friends in need. But myself, I’ve never really focused on creating a family – instead only thought about study, study, work, career advancement, study, travelling around the world and more study. I’ve had a few fun years of partying and really feel like I’ve lived the best of my life… until now. Now, the prospect of a whole new life is on the forefront. It’s like someone that changes careers after 30 years. I only know one way… now, I’m going to have the opportunity to learn a new way to live life and I am so looking forward to the challenge.

Wegener’s has been one of the biggest struggles in my life, and I know so many friends with challenging autoimmune disorders that have had very similar struggles to me. Part of my treatment involved a full year of chemo with a very potent drug that threw me into menopause and wiped out my egg supply in a quick 10-months. From that point on we were doomed to think that we had no chance to have children, and in our late 30’s we started looking at other viable options.

Adoption was a no go. Although we would have been more than happy to adopt, in Australia, adoption can take anywhere from 5-7 years – I don’t have that kind of time to wait. And not only that, my medical condition, or in fact – any medical condition – knock’s you off the Adoption list immediately. Goodonya Australia! As citizens of Australia we are not allowed to come back to the US for the sole purpose of adopting – it’s a slippery slope and so we chucked the idea pretty early on.

IVF was a good option for us and first we tried to find out if there were any eggs salvageable to use. Knowing that there are no eggs really throws you for a loop. I started seeking out more alternative forms of IVF, including an egg donor. I must say that it was a tough road ‘asking’ for someone’s eggs but in the process of seeking out that right person – SHE was seeking ME out. The most selfless act anyone could give is part of themselves. I am blessed to know someone like that, who has given us a chance at having a family and has been supportive and involved in our family process.

To my egg donor (you know who you are):

You are the most special person I have ever met and I don’t know how I will ever repay you for your loving me so much, that you could ‘offer’ me the chance to be a Mother. Although I live in a land far, far away, I know that you will always be a part of my life and my child’s life. I love you so much. Thank you for the gift that you have given us. I love you more than words can ever say.

We still have a long road and 6-months of struggle ahead of us to get to our goal. Medical problems can be the root of all evil when it comes to having a baby so from this point forward we work at staying healthy, in remission, sleeping A LOT, and controlling my blood sugars to give #5 the best chance at a healthy life.

I pray for all my friends out there still struggling with getting pregnant or trying to adopt, the pain in waiting can sometimes break your will, but be strong and continue on your path. From experience I can tell you… “it’s never too late”.

Lainey & Birdie

Fri
15
Jul '11

Medical Update

Doctors Update Today

Got word from the doc today that all the meds are doing their job and stabilizing my Wegener’s! It’s great news that I will continue on my current medicaiton regimine and not progressing to stronger drugs, which I’m not sure my body can handle at the moment. So I’m on the slow decrease of drugs and continuing with weekly blood tests so that we can monitor the progress. I’m coping with my bloated steroid body and looking forward to rest and relaxation this weekend before I head back to work on Monday. Working is definitely something that is a struggle for me at the moment, but sitting at home in bed just is’t me.

Pills, pills and more… pills

It’s been a tough couple weeks since I was admitted to hopspital with a Wegener’s relapse, resulting in a pulmonary hemorriage, bleeding in the lungs.

During my admission they gave me IV Predinolone, and these kind of steroids really bloat out your enitre body. I’v become a literal windbag – looks like I’ve gained 20 kilos in just a couple weeks. In addition I’m now taking so much of the oral prednisolone and other drugs that my body is not coping well.

I’ve reverted to working one day from home now as I can’t physically make it through the work week with getting up, ready, and the hour commute to the city each way it’s been pretty stressful.

For now the medication is changing, less Prednisolone from today, and more Imuran both which stabalises my auto immune disease and also supresses bone marrow, it allows for fewer opportunitstic infections. Once we know that my Wegener’s is stabalised we will start to decrease both medications until I am in remission.

We’re still on hold for IVF. We still have a few more tries, but will need to wait at least 6-months (or longer) for this episode to pass before I can see if I will be ready to give it another go.

I’m getting over another cold, and I think I can avoid going to the hospital again this time. I’m just looking forward to taking my lovely meds and staying as healthy as I can until I am in remission. All bloating aside… I have a lot to look forward to in life, my husband, family and friends are so supportive. Love to everyone in that has been there for me and tries to understand what I am going through. It’s not easy but I’m still here. That’s something to be thankful for.

Sun
21
Nov '10

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