Three little letters

Dear blogger friends,


In the last blog post I explained about the new blog title, but I also left you hanging, saying that I would later explain how our lives were taking a hilly turn... Firstly, i would like to begin this post with the ending of a new favourite author of mine...she ends a letter to her readers in much the same way in every book, and it seems appropriate for the highway/rollercoaster journey we are taking. So “…strap yourself in tight, and don’t forget to b r e a t h e…”


Well, to accurately describe our journey it all began just over two weeks ago...Monday the 28th of March, 2011... At 830am we were in the waiting room of our local SKG Radiology office, excited about our 18 week pregnancy scan and getting to see our second child.


The scan began much the same as the scan we had when pregnant with Lucas, with the exception that the sonographer wasn't as chatty as our previous one. Anyway, she took the usual measurements and we got to see the heartbeat, its two little feet and two little hands, a profile shot and many screens of the internal organs.


We first suspected that something wasn't quite right was when the sonographer kept returning to look at the same area, the upper chest cavity and heart. Our second clue was that the sonographer became very quiet!! And our third clue was that we were there for nearly 2 hours, for an appointment that usually takes no longer than an hour...


So after waiting all that time, the sonographer finally said we could go and handed us the CD of photos to take home. It was a few hours later that we had our fourth and final clue...Chris missed phone call from our doctor. The doctor left a message explaining that we needed to come in and see him at the end of the day. He also explained the reason why.


Our baby has been diagnosed with a birth defect called congenital diaphragmatic hernia, commonly referred to as CDH...(three little letters).

Now, unless you have been personally affected by CDH you have probably never heard of it. Although it is classified as a rare condition, it actually occurs in 1 in every 2500-5000 births (depending which website you take your stats from).

CDH affects the internal organs in the stomach cavity and the chest cavity. The diaphragm is a muscle that separates the chest cavity (heart & lungs) from the stomach cavity (stomach, liver, intestines etc). It also helps us breath. A hernia is a protrusion of  tissue or organ in a weak muscle. Therefore, CDH is when the diaphragm has a hernia (in our case its on the left hand side) that allows the stomach organs to move up into the chest cavity, thus restricting the growth of the lung, pushing the heart across, and can affect the other lung also.

In our case, we have been referred to a specialist at King Edward Memorial Hospital (KEMH) which provides the best antenatal, specialist care in Western Australia. We have met a few members of our "team" that consists of doctors, midwives, residents, surgeon, paediatrician etc. It is also at KEMH that we will continue to receive on-going antenatal care and where we will deliver our baby.

So, we have shared the negative news that we received, however, there are some positives as well. We have been told that at this stage (20 weeks) our baby is looking healthy, other than the presence of CDH. We are also one of 8 or 9 families who are expecting a child with CDH in WA, thus meaning we are on the same rollercoaster road, and will hopefully be able to meet with them at some stage. Also, our team of specialists is encouraging me to have a natural birth (yay), no c-section unless medically necessary (just like any other birth).

Our specialist was also very excited to learn that Lucas was a big baby (9pd 3oz) as a bigger baby generally has a better chance of survival and there is a fair chance this baby will be big also.

We have also found two website, one from the US and one from Aust that offer support for families who experience CDH. The Cherubs websites are fantastic sources of information and inspiration.

Now, our journey will take us down a difficult stretch of road, with new experiences and more times of uncertainty. I (Tamala) have decided to blog about those experiences as it will help us process and absorb the information and help us adjust to our "new" lives. You are welcome to come along this journey with us, and feel free to leave comments here, via email, via facebook, in person, or any other way possible. Also, please do not be offended if we were unable to tell you in person - there are many people to tell and only so many times that you repeat the diagnosis. Therefore, we thought our blog was the best modern method of informing all of you at the same time.

We will leave you with encouraging words from Psalm 139, that remind us that no child is an accident, that all children are a miracle made by God, and although they may not be perfect here on earth, they will become perfect on the new earth.

Psalm 139: 13-16 (NKJV) 

¹³ For You formed my inward parts;
         You covered me in my mother’s womb.
 ¹⁴ I will praise You, for I am fearfully and wonderfully made;^[b]
         Marvelous are Your works,
         And that my soul knows very well.
 ¹⁵ My frame was not hidden from You,
         When I was made in secret,
         And skillfully wrought in the lowest parts of the earth.
 ¹⁶ Your eyes saw my substance, being yet unformed.
         And in Your book they all were written,
         The days fashioned for me,
         When as yet there were none of them.

Profile - 18 weeks

Feet - 18 weeks

20 weeks pregnant



New Title

So...you may have notice that I changed the blog title ... "Life's Highways" ... I was going to change it so that it had something to do with roller coasters, but since I've never been on one, I thought a highway was something I am MUCH more familiar with.

The new name came to me when I reflected on the fact that we are travelling a lot this year, down the main highways of the South West and Great Southern and that life is a lot like those highways. Sometimes you get a great run, not much traffic and the trip goes quickly. Other times, there is a lot of traffic, and everyone has to slow down and take their time. Also, the highways have many corners, turns, hills and valleys. Therefore it seemed fitting that I change our blog name to something that is very relevant to our lives :)

Also, our lives are about to take one of those hilly turns...an unexpected one...but more details to follow in the next few days when I get time to type it all up...

And just so you have something to look at other than text...here's a recent photo of me with Lucas

A Poem

While surfing the Internet I stumbled across this poem that I will admit brought a tear to my eyes. Its such a beautiful poem, and I hope it touches the hearts of all those who read it.

GOD'S LOAN

(author unknown)

"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while she lives
And mourn for when she's dead.

"It may be six or seven years
Or twenty-two or three,
But will you till I call her back,
Take care of her for me?

"She'll bring her charms to gladden you
And should her stay be brief,
You'll have these precious memories
As solace for your grief.

"I cannot promise she will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn.

"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you. "Now will you give her all your love
Not think the labor vain,
Nor hate me when I come to call
To take her back again?"

It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run.

We'll shelter her with tenderness,
We'll love her while we may,
And for the happiness we've known
Forever grateful stay.

"And should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."

 

Lack of Recent Photos

This is the reason I (we) have been lacking in posting (many) photos of the little munchkin lately...its getting difficult to take nice ones, as Lucas thinks its just a new way to play the game pee-a-boo :)

"I can still see you daddy"

Our Weekend

Our weekends have been pretty busy lately, and will only continue to be busy as we have a few road trips planned, plus the soccer season is starting up again next month. Unfortunately, Lucas still isn't acclimatising to these trips, making for an interesting time, trying to pass "stuff" back to him in the car.

Anyway, last weekend we went and visited with Chris's sister, brother-in-law and their 3 kidlets. I did forget to take my camera along, so sorry, no photos of our time.

We headed down on Friday night, after Chris finished work. When we arrived our nephew and nieces were all asleep, so Lucas got to spend some quiet cuddle time with his aunty, before his drink of milk before bedtime. We then sat up and talked, sharing all the news and generally catching up :) Before we knew it, it was almost midnight!!

Saturday we started the day off with a special breakfast (for us anyway) made by our brother-in-law, before heading out to check out our nephew's new school, classroom, desk, hat and everything else he could think to show us :) It seems like he has settled in pretty well and is thoroughly enjoying his new school, teachers and friends.

After the school, we headed into town to walk the main drag and head out for a nice, albeit noisy, coffee :) The weather was beautiful, and the walk around was great too. Then, after a stop at the local lolly shop to get some Canadian type chocolate, we drove back to house, with Lucas falling asleep on the way. Poor thing was so tired and he had missed out on his morning sleep and refuses to sleep in his pram. Oh well...he transferred well from the car to his cot, and slept for a few more hours.

The kidlets ate their lunch on their own and then headed off to bed for sleeps and rest time, while the adults enjoyed a simple, yet very yummy, toasted sandwich...and we even got to try a combination we've never eaten before...and i think we shall be making that ourselves :)

The afternoon was a lazy and relaxing one, spent playing with all the kidlets outside, watching the men play on the playstation Move and packing up to head back home. After a stop for take away dinner before leaving, we heading back up the highway, for a short-ish drive home.

Thanks for a great weekend TKBAS, we thoroughly enjoyed spending time with you all again and seeing your new home...we shall be doing it again when we can :)

and finally, a photo for those who read this blog just to see photos of Lucas - this one was taken last month and he is playing with some of his birthday presents.

And don't worry, i shall endeavour to remember my camera when we go out next time :)

"Caesar"

I wanted to share a funny, yet odd, phase that Lucas is going through in his learning development. Some time ago now, Lucas learnt how to say the word "Caesar" which is the name of my in-laws' dog.Except, in his mind, every dog suddenly became "Caesar". Even though we have our own dog that we got well and truly before Lucas was born. So now all dog's are "Caesar". For example:

* Lucas will often crawl over to the glass sliding door, bang on the window and call for "Caesar". We were also out visiting someone who had a dog, and Lucas did the same thing there :)

* Last Tuesday, i was changing Lucas's nappy and he was occupied reading himself a book, when suddenly he stopped and stared at a particular page. Then loudly announced "Caesar"...i looked at the page and low and behold, he had found a page with a dog picture on it.

* Out for our morning walk we saw a small dog walking with its owner, and once again Lucas was excited to see "Caesar"

* Then this afternoon I was reading him a Spot book. That was a bit of a mistake, as on every page he would "Caesar" and wouldn't listen to the actual story.

So, for the time being, we indulge in his "Caesar" and attempt to correct him by saying "dog"...it makes life pretty interesting :)

Albany Long Weekend

Over the March, Labour Day long weekend, Chris, Lucas and I headed down the highway to spend the weekend in Albany. The weather was predicted to be a number of degrees cooler than Perth, who had just come off an all-time high of some ridiculously high number of consecutive days over 30 degrees!! So the cooler weather was very welcome indeed!!

We travelled down on the Friday night, and arrived quite late at night. We spent the Saturday pottering around, relaxing, and generally not doing much of anything. We did spend a lot of time playing Wii. I paid for this the next day as i must have used muscles that haven't been used much lately :(

We also made our usual pilgrimage to the Dome where we enjoyed lunch with my mum and sister. As per usual, Lucas set about charming anyone who would look his way and we give him attention :)

Sunday we had coffee and cake with my grandparents, who Lucas calls Opa and Oma. He was a little confused because Opa Hart didn't look like the man he usually calls Opa (Opa Vdl) :S

Then on Monday we headed down to the beach, to let Lucas get used to the sand and water. We find it difficult to get to the beaches up here, as most require a longer drive and we are usually pretty busy on the weekends. And in Albany the beaches are only 10mins away and even though Monday was cooler again, we decided to go down for a little while. Lucas doesn't particularly like the beach (he's like his mum), the sand or the water. But Chris managed to get him a bit wet and covered in sand AND to give a smile.

All in all, a nice, relaxing, quiet weekend in Perth. And then, before we knew it, it was back up the highway to the daily life of warmer weather, household chores and work. We are now busy preparing for yet another road trip, this time to see our nephew and two nieces.