My Life Abroad: The Adventures of Two Birds
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Thu
4
Sep '14

Raegan’s Medical Update

It’s been a whole year, well more than a year now – Raegan just turned 16 months old. I can’t believe it has gone by so fast! Her first words are forming and she is so close to walking now.  A little over a year ago we were in a bit of strife.  Raegan was diagnosed with left atrial isomerism which is a condition where the organs are not in their correct positions and the heart has some deformities, her heart was looked at from before birth by a Paediatric Cardiologist and we were told that her heart is mid-lined in the body, and that there was issues with IVC, the vein from the heart that drains to the lower half of the body, being blocked.

Long before she was born, at my 20-week scan our doctor used the ultrasound along with an amnio to determine what issues that Raegan may be facing.  We were lucky that things weren’t as bad as initially – we did have a bit of worry in the beginning.

Today we had our one year check up with the Paediatric Cardiologist, he gave us the green light and said he’d follow up again in 1-year.

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Her IVC, which brings blood from your lower extremities and should connect to the right atrium of the heart. In this case, instead of continuing to the heart, this vein joins another vein (hemiazygos) and continues to the superior vena cava which then connects to her heart.

Somehow in utero when the IVC got blocked, her body made up this new way to connect. Apparently it is still working with  no problems.

Left isomerism, is something I’ve been trying to explain here on the blog since before Raegan’s birth.  It is the mirror image of the structures on the left side of the chest along the left-right axis of the body, i.e. patients with isomeric left atrial appendages frequently have bilobed lungs bilaterally and each with a long bronchus. Additionally, they commonly have polysplenia and  pulmonary veins connecting to both atrial chambers.

Left isomerism, also called polysplenia, is a laterality disturbance associated with with paired leftsidedness viscera and multiple small spleens. Left isomerism, heart congenital abnormalities and gastrointestinal malformation are strongly associated. Raegan has 3 spleens.  Many times with polysplenia the multiple spleens do not work properly and it causes a case of immunity to bacterial infections.  It can be a very serious condition, but after  year of testing we have found that the spleen that is broken into three is still working for Raegan.  I couldn’t be more pleased.

In the below diagram, (A) a regular set up for the organs, (B) Raegan’s set up which is a mirror image of the norm.

situs-inversus

And in this diagram it shows how the IVC is interrupted or cut off and the new azygos and hypoplasia that the body created to circumvent the problem.

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Thanks for checking in on my little blog.  I hope that now things have settled, we can concentrate on raising our beautiful daughter and worry less about these issues.  Rae is a wonderful, happy, and loving little girl, and the love of my life.

Sat
31
May '14

Back from my blogging hiatus…

The long awaited return to my blog was prompted by my fellow blogger and very good friend TeeBiss.  Thanks for asking why I haven’t posted for over a year.  I do have a good reason, which I will explain through the course of this post. The last year, since Raegan’s birth has been incredibly busy!!  I never knew how stressful, worrisome, and difficult it would actually be.  But we’ve made it through year one, and I am ready to start blogging again. We started off with some bad news from the Doctors just after Rae’s birth.  She’s got a hole in her heart that didn’t look like it was going to close permanently.  This in addition to the fact that she was born with Atrial Isomerism which means that all of her organs are in the wrong place, can be a very bad combination.  In addition, many times with this condition, the baby will not be born with a spleen. It took months and many specialists to find in the end that her heart, although placed midline on the body had only a very small hole at 4-months, the Paediatric Cardiologist was happy for her to move forward and he would see her in 1-year, her appointment is coming up very soon.  We spent almost the entire year seeing specialists looking for her spleen, testing her to see if she had one, and the main problem was that because the rest of her organs are misplaced, it was likely the spleen was too.  It is a small organ.  We went in for a scan to look for it for the 3rd time and we had to have her fast prior to the appointment.  No milk for 3 hours prior.  They started the scan and there, hiding behind the stomach they found 3 spleens.  Essentially the spleen has broken into 3 pieces, called polysplenia, there’s also something called multisplenia which is when the spleen breaks into 100s of pieces.  With multisplenia and polysplenia sometimes because the pieces of the spleen are too small – they don’t work together to fight off bacterial infections (which is what the spleen does).  Only a month ago, just before her first birthday we got some test results saying that her spleen was working.  We couldn’t be more relieved.  She seems to be carrying on like any normal baby and OMG aren’t we so happy about that!  From 20 weeks to a year after her birth we were sick with worry that she wasn’t going to have a normal life, and that she would have to endure surgery, and pain to fix things up.  It’s amazing, hundreds of thousands of people are born with jumbled up organs, before ultrasound you never would know until you had a surgery.  She’s just one of the many people with this condition.  It just hasn’t effected her in the least.

As I said previously we sold our house in Belgrave, Victoria, AU so that I could take some time off work and we could live on one income.  It probably the best decision we could have made.  We’ve been renting for a year, and after 9 months off, I have returned to work.  Now that I’m back at work 4 days a week (1 at home, and 3 in the office) we are going to upgrade our rental to a bigger place, with room for the dog, backyard, one story and something more open plan. My return to work has been good. I work for a good company that appreciates me and care about work/life balance, so much that they let me work less than full time.  I’ve gone back as a Consultant but we are in the works to bring me on in a full time permanent role. It’s good, I can’t complain really. I was hired back into the same role I was in previously with the same great team – I couldn’t be happier.

When Raegan was 4 months old we took our first trip to the U.S.  We spent a couple weeks with my brother in San Diego (I love SD, I wish I could afford to live there), and a week in Vegas with my Mother and our extended family on my Mother’s side, and finally a week at my Mother’s place in Sacramento.  We stopped into Chico for a beer festival and to catch up with our friends, and we had a short visit with my cousin Lavette and my Gramma Hay, and we spent a night in LA with my cousin Laura and her 15 mo old Audra.  Raegan was so small but even though she won’t remember the trip, it was so good for my family to see her, hold her, and experience our precious little bub.

So.  There’s my explanation, baby + travel + work = little time to blog.  But actually recently I’ve been thinking about getting back into it and today when I was scrolling through my friends blog I saw a post that was addressed to me.  I’m back.  We’re leaving in 3-1/2 weeks for a Bird Family holiday at Surin Beach, Thailand, with the grandparents, cousins and everyone for 17 nights!  My mom is coming out for a long vacation at the end of the year as well.  I’ll be blogging a lot from Thailand and that will get me going for this next crazy year. It’s good to be back

Here’s a couple recent pics of our little “Chicken”, she’s now 13 months old, you can click on the pictures below to see them enlarged –

 

Sun
5
May '13

Introducing: Raegan Christina Bird

 

Saturday 4 May 2013 @ 8:30pm

Well, the time has come.  Our wonderful baby girl has been born and her name is Raegan Christina Bird. 8-weeks early, a whopping 4 lbs (1.85 kilos) and 17 inches long.  She is a cute little thing with some fuzzy brown hair and a lot of movement.

just born

She was breathing on her own right from delivery and she let out a nice good cry.  Raegan is already a cute and calm little bub born at 32 weeks – now 1 week out of the womb she has really thrived and although she is a premie she really is progressing quite well.

Initially at our 20-week scan were told many things about Raegan’s condition – which of course made us very weary.  After meeting with the Paediatric Cardiology Specialist and having him perform a scan on Raegan’s heart and chest what we know is this:  Her stomach and liver had swapped places, and her heart is midlined, the heart is in good shape structurally, currently the flaps between the two mixing chambers of the heart are supposed to close up after birth but they look like they are not long enough to meet up and close on their own. This will leave a hole in the heart and cause an atrial septal defect.  It the hole is very small it may not need to be repaired, but repair including surgery is available if need be.  

diaper changr4One of the things we do know is that she has an Intestional Malrotation of her lower GI tract.  When the stomach and liver develop in the wrong place, it sometimes causes volvulus – when the intestine twists in on itself, potentially cutting off the blood supply, or can also cause an intestinal obstruction.  The surgery, laproscopic surgery, can be performed to pin the intestine into the correct place. We’re hoping to know the results of this test soon, and if it is malrotation, when we might be in need of surgery. We go in for a final analysis in July with the surgeons to make a decision to go ahead or

5 days old_dummy

possibly wait until she is older.  They can do this surgery up to the age of 3 years depending on the severity.  Recovery is just a couple days.

Lastly it seems that Raegan has a missing Spleen called Asplenia. Again with the mixed up organ placement they are unable to locate the spleen.  Tests have been run to detect the spleen function but because she is already on antibiotics and her spleen is not actively fighting infection, it does not give off any secretions.  The Spleen is responsible for protecting the body against bacterial infections.  There is a large regimen of vaccination/immunizations that needs to happen to make sure that she will be protected against infection. The doctor says that many people are born without a Spleen or lose their Spleen in an accident still live full long lives.  From birth to age 5 we must be very careful to not expose her to anything that could cause infection such as whooping cough, influenza, meningitis, etc.

The diagnosis (to date) seems to be Left Isomerism, also called polysplenia, is a laterality disturbance associated with with paired leftsidedness viscera and multiple small spleens. Left isomerism, heart congenital abnormalities and gastrointestinal malformation are strongly associated.  Generally with left isomerism there is a spleen or multiple spleens, so the doctor still won’t confirm that there is no spleen until they can do further tests and possibly look for the spleen during the laproscopic intestinal surgery.  Until then we proceed as if she has no spleen.

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3-weeks old (gassy smile)

Wednesday, 22 June 2013

Today we are 7-weeks old, Raegan has been home from the hospital for about 2-weeks now and she is thriving, gaining lots of weight, eating and sleeping well.  We are all getting used to each other and are enjoying the experience.

In Australia there is great home medical network for babies.  We have a Maternal Health Child Nurse that comes to the house to visit weekly through the first 10-weeks after she is home.  She is weighed and because she need special immunizations they come to the house to administer these for her.  It is risky for me to take her to the doctors office and sit in the waiting room with sick people – so all in all it is best for her health. She really is a blessing and we are so happy that she is doing well.   At least… so far so good.

Our wonderful little girl is happy and content, and will be soon meeting her family in America when we take a trip for a family wedding and visit later this year.

baby

By far, this is the best thing I’ve ever done in my life.  I’m so happy to share this with so many wonderful people who care about and love Raegan and will be there throughout her life.  XOXO

Sat
4
May '13

My Pre-eclampsia, treatment, and our early “Bird”

Certainly after all of the struggles we’ve had in this baby making process, my sickness and chemotherapy resulting in no eggs, finding a suitable donor, doing IVF for 3-years and then with my diabetes and auto-immune disorder it has caused problems for our little bub as well.

So here I sit on the maternity ward, 8-weeks early, waiting for our C-Section surgery.

I know that many have had pre-eclampsia, or maybe of you have no idea what it is exactaly. Before I explain eclampsia and pre-eclampsia I thought it would be an good point to make that everybody is different and every situation is different and as much as I would love to go to term it is not possible for me. I don’t know what this means at this exact moment for our baby bird, we can only intrust in the doctors and specialists that haven been working on our case to make that decision.

Eclampsia is an acute and life-threatening complication of pregnancy, characterized by the appearance of tonic-clonic seizures, usually in a patient who has developed pre-eclampsia. (Pre-eclampsia and eclampsia are collectively called Hypertensive disorder of pregnancy and toxemia of pregnancy.)

Eclampia includes seizures and coma that happen during pregnancy but are not due to preexisting or organic brain disorders.e

**Pre-eclampsia a medical condition characterized by high blood pressure and significant amounts of protein in the urine of a pregnant woman. If left untreated, it can develop into eclampsia, the life-threatening occurrence of seizures during pregnancy.

There are many different causes for the condition. It appears likely that there are substances from the placenta that can cause endothelial dysfunction in the maternal blood vessels of susceptible women. While blood pressure elevation is the most visible sign of the disease, it involves generalised damage to the maternal endothelium, kidneys, and liver, with the release of vasoconstrictive factors being a consequence of the original damage.

Pre-eclampsia may develop from 20 weeks’ gestation (it is considered early onset before 32 weeks, which is associated with an increased morbidity). Its progress differs among patients; most cases are diagnosed before labor typically would begin. Pre-eclampsia may also occur up to six weeks after delivery. Apart from Caesarean section and induction of labor (and therefore delivery of the placenta), there is no known cure. It is the most common of the dangerous pregnancy complications; it may affect both the mother and fetus.

So what’s happening to me, as we speak, I’m waiting to be taken off to surgery, I’m in te birthing suite now, and my Kidney function is very very bad, almost non-existent.  My blood pressure is fully under control at this point but if my Kidneys fail, it is likely that I will not make it through this process.  So unfortunately there is no option to send me home on bed rest with the current scenario.

Looks like bub is coming tonight.  We’ve prepped for surgery and now we wait for the green light.

Fingers crossed everyone!

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