Merry Christmas

WISHING ALL OF OUR READERS A WONDERFUL,

MERRY CHRISTMAS, 2011

HOPING YOU ALL HAVE A LOVELY DAY CELEBRATING JESUS' BIRTH 

(and a little chuckle at the comic)

p.s. a few years ago one of my nephews was being told that Christmas is Jesus' birthday and that we would all go to church. He innocently asked if Jesus would be having a party, balloons and presents :) oh the innocence of a child!!

CDH Teddy Bear

IT HAS ARRIVED!

Isn't it just adorable? :

Fun Outside

Today I had the pleasure of looking after my niece, Maddi. She is 3 and a half years old and plays very well with Lucas. And he plays well with her. He loves the attention of older children.

Once the day warmed up a bit, the 2 children were allowed to go outside and play in the splash pool. They had a ball, wetting each other, wetting the ground, watering the "plants" (weeds) and just generally splashing about. I had fun just watching them :)

But looking after 3 kids is definitely harder than looking after 2!! Poor Tahnee often had half feeds, as I needed to get up and help the other 2. And now I'm exhausted! I couldn't go for a snooze as Maddi doesn't sleep during the day very often - something I'm not used to in the slightest!! But it was a fun day, all in all.

Final PMH Appt for 2011

Today we made the trek back to Princess Margaret Hospital, this time for 2 appointments. The first was to meet with both the consulting doctor, who has been with Tahnee since she arrived on Ward 6B nearly 16 weeks ago. He saw her nearly every day while she was an in-patient. This out-patient visit was to check her development at 4 months.

The second appointment would follow the first and involve us seeing the surgeon, as a follow up on the x-ray and ultrasound she ordered at the previous visit concerning the strange lump on Tahnee's left hand side.

Chris took the day off work, and we arrived early enough at the hospital to make a quick stop past Wad 6B. We had a few photos and other things to drop off. Tahnee also got a few cuddles with some of her nurses. They still remember her and cant believe how good she looks, how big she is getting, how many smiles she gives and how settled and happy a baby she is!

Afterwards we headed down to the Out-Patient department to wait for our appointment. As we were sitting there we saw another mum with her baby walk in. Chris and I both turned to each other and said we thought we knew the lady...after thinking for a minute or two we realised her baby was in 6B at the same time as Tahnee. She recognised us too and came over for a chat. A few minutes later we saw another couple walk in who had been on the ward, and later again we saw another mum and baby we recognised!! Lots of familiar faces today :) However, we mainly know faces and not names...but we have shared many tired, stressed smiles with many parents!

Part of our appointments involve a visit to the nurses station to have Tahnee weighed and measured for length and head circumference. She is still tracking around the 50th percentile for weight, according to the chart in her purple baby book. However, she is tracking on a different percentile according to the scale the hospital uses. The main thing though, is that she is consistent, and hasn't plateaued or lost weight.

Our next stop was the doctors' office. Like the nurses on 6B he was rapt with Tahnee's development and progress. He checked her over, tested her hips and listened to her lungs and heart. We also got a chance to discuss our questions. 

Yesterday on face book I posted that Tahnee had been unsettled (highly unusual) and I couldn't work out why. She was difficult to settle down to sleep, but was happy otherwise. Then last night she had a massive #3 {poo explosion}. I thought it might of been the reason for her being unsettled. We brought it up with the doctor who said he had no answer! Most babies become unsettled at one point or another!!

Next we inquired about the lump on her left hand side. To recap, the ultrasound Tahnee had when she was an in-patient indicated that the lump was her kidney. The second ultrasound she had last month indicated that it was now part of bowel. The lump has always been palpable, and fairly prominent, especially when naked and/or crying. The surgeon believed that it could be prominent due to poor muscle tone. The doctor rang the surgeon and they discussed the results over the phone. Both agreed that the x-ray and U/S show that Tahnee has another hernia (!) - but don't worry! This type of abdominal hernia is quite common and many people have experience with these (or versions of, such as umbilical hernias). {when we began to tell people about Tahnee's condition before she was born, many people said that it wasn't that bad, as they had had a hernia in the past - those hernia's are relatively harmless and often go away on their own - whereas Tahnee's diaphragmatic hernia was life threatening, affecting many organs etc}. So, this hernia should go away on its own, without the need for medical intervention. She will still have it monitored at future appointments next year.

Meanwhile, the x-ray also gave us the opportunity to see how Tahnee's lungs were developing. Unfortunately, the x-ray was crooked, so the picture was blurry and a bit hard to read/interpret. What we/the doctor could figure out was that her left lung was still smaller than the right one, but it most likely always will be.

Since the doctor and the surgeon agreed on the diagnosis, it was deemed unnecessary to see the surgeon, so we were free to leave. After a quick stop to feed ourselves and Tahnee, we headed home :)

kissing Tahnee's owies (scar) all better

Market Stall

We had our inaugural stall at the Fine Food and Craft market last Saturday. It was a crazily, busy day that was heaps of fun!! We started with an early wake up to get ourselves plus the kids ready to be at the church by 7am. We were then involved in hanging the quilt up on the wall and setting up the stall (and feeding the baby).

The markets officially opened at 8am and the day was off! We had many people stop past the stall. They were able to read a display that told of Tahnee's Journey and hers and our experiences with CDH.

Visitors to the stall were also able to purchase CDH Australia items. We had pens, wristbands, stubby holders and coffee cups. Visitors could also order white plush teddy bears (we had ordered them but they did not arrive on time).

The quilt that mum made came up a treat!! We had many comments on it, but unfortunately we did not sell it at the markets. We are now looking for somewhere else to sell or auction it off.

Photo courtesy of one of the FF&C Market Organisers

Friends of ours also donated a gingerbread house they made from scratch and decorated themselves. Everything was edible except the tray it was on!! Visitors to the stall were invited to guess how long it took to make and decorate. Each guess incurred a small cost and the guessers also received a yummy gingerbread biscuit or candy cane. All monies from this were donated to CDH Australia. In total it took 627 minutes to make - and from all reports it was a fun filled time!! Thanks Janssen ladies :)

During the morning Lucas was looked after by various people including the Vissers, Grandma and the Aunties. He had good fun going around the stalls, playing with his cousins and being a little, cheeky monkey. Meanwhile Tahnee was fantastic and spent most of the time asleep in her pram in the corner of the room!

It was a great experience and a good day. We met lots of lovely people and spoke about Tahnee with many of them. We also had 2 other CDH families come down for a look-see :)

And like one visitor aptly said to us: "it doesn't matter how much money you raise, the important thing is that you are spreading the awareness of CDH"

CDH Updates

We wanted to let our readers know of a few updates regarding CDH and CDH Australia. We are VERY BUSY this week getting ready for the Fine Food & Craft Market on Saturday. My mum is frantically finishing off the quilt, I am preparing the various displays and paperwork and Chris is working out how to display the quilt. We are hoping for a stall against a wall so we can hang it up and all who come to the markets (hint hint) can see it in all its awesomness :)

The items we are hoping to sell at the markets have also arrived. These include wristbands, pens, coffee cups and stubby holders. Unfortunately, the teddy bears did not make it, but good news is that if you do want one, we can place orders and get them at a later date :)

Now to update you on CDH Cherub babies that we have mentioned in the past ... Baby "B" from Perth was at PMH for a mere 13 days!!! How awesome is that?!? He has been home for a while and from all reports is settling in very well. He has even begun rolling :)

Baby "R" who is a week older than Tahnee, came home a few weeks ago!! WOOHOO ... he came home still on oxygen and requiring continuous milk feeds overnight, but his parents are loving having him there! I think many CDH parents prepare themselves to take their babies home still attached to monitors, oxygen and the like ... I know we were preparing for this as it is one of the realities and struggles of CDH.

Baby "H" was born a few weeks after Tahnee and has had a few struggles. At one point her mum said that it was one step forward and 3 steps backwards. The doctors had all but told the couple they made the wrong decision in continuing with the pregnancy as baby "H" had additional cardiac problems ... BUT the BEST news is that as of a few hours ago this baby came home :) She has beaten many of the odds and done so exceptionally well ... I love reading updates of this little cherub.

Finally, another little cherub baby "O" is a Perth baby who at 6 months may have re-herniated. The update from last week said that she was in hospital and the medical teams were trying to work out a solution that did not involve surgery. It is heartbreaking to hear about these setbacks, but like I've said before, it is one of the many struggles associated with CDH. It is a devastating birth defect that has many repercussion for years to come.

Of course there are more families who experience the effects of CDH. And we know of another family who is due to have their baby next week. Their emotional journey is about to get harder once bub is born and we hope and pray their baby fights hard and stays strong!

This is just a brief update on the ones that we know of. We continually remember all CDH families and their babies and prayer their outcomes will be positive. By preparing the displays for the markets, I was reminded of the journey we went through, the ups and downs, the stress and emotions, the joy and tears ... it was extremely tough, maybe tougher than many of you realise. And for some families their journey is easier than ours and for some it far harder than ours. Please keep us, our CDH friends and babies, and anyone else who has experienced a birth defect in your prayers ... too often we take an "easy pregnancy" and a "healthy baby" for granted.

p.s. if you come down to the markets, check out our display where we will have some of these CDH babies photos up - they are all extremely adorable :)

The end of an Era

Last weekend marked the end of an era for me (and Chris and the kids). It was rather strange and a bit surreal making the trek down the highway for the last time in a long time. I realised that I wouldn't miss the drive per se, but will miss the view from the window and the town I called home for 20 years, along with the friends and people in it. If you don't already know, my family is moving up to Perth in just a few short weeks, and we headed down one more time before they do this :)

The trip was Tahnee's maiden voyage down to Albany. And it was not a nice one, from a driving perspective! It took us an hour longer than normal. We had to stop and feed Tahnee, as well as stop to find Lucas's dummy and for toilet breaks...we were pretty tired when we finally got to Mum's house.

Saturday morning we took our time getting ready and then headed into town. We went for a coffee, did some shopping and bought a few things :) Since it was nearing lunch time we headed back to mum's to put the kids down for sleeps.

While the kids were sleeping Mum said she would stay home with them so Chris and I could go out on our own. We took the camera and headed up to the lookout at Mount Melville - a place I hadn't realised Chris had never been to!!

Once up on the lookout we realised just how windy it was outside!! It was a struggle to do the 360deg walk around ... but Chris still managed to take some nice photos of the view.

Looking out towards Middleton Beach

The wind farm

"Sleeping Beauty"

After the lookout we did the 'traditional" Albany thing of a "mariney" but did not stop to take any photos as it was nearing time for Tahnee's next feed.

That night Mum, Chris, I and the kids headed out for dinner while my sisters went to a party. Afterwards we went to visit my aunty and uncle and introduce them to Tahnee. Its very special being able to do this :)

Sunday was relatively quiet. Lucas began the day playing with Duplo with Grandma. He loved having the attention of her and his two aunties that weekend.

Mum looked after our kids while we went to church. When we were all home we sat down for coffee, cake and lunch. Then one of my sisters' and her boyfriend went a friend's house while Chris and I got busy with clean up and packing to go home. We had planned to keep Lucas awake so that he would fall asleep in the car and hopefully sleep most of the way home...however he had other ideas and about an hour before we were going to leave he gave in and went for a sleep on Jess.

It was about this time that I realised we had taken no photos of Tahnee on her debut trip to Albany ... so I took one of her talking with Grandma :)

The trip home wasn't much better than the trip down. Again we stopped to feed Tahnee and let Lucas go play on the play equipment in the hope that it would tire him out. It wasn't to be and we had both crying off and on all the way home. Not a very pleasant last trip home again, but nevertheless we made it back safe and sound. And in a few weeks it will really be a thing of the past as Mum will be "just around the corner" rather than 4 hours away :)

Wishing our readers a lovely week...only 20 sleeps till Christmas, when we will hit the road again and go away with Chris's family!!! argh!! :)