Man! Some people just DON'T get it!

Do you have a body baby?
I have always called Maddison my body baby. She has been attached to me since I took her home from the hospital at 6 weeks until then it was just patting and cuddles were few and far between.
Everyone said “She’ll grow out of it” but alias 3 years later and not so much!
Pretty much like clock every 10 minutes she will come up to me and say “MUMMY, I want cuddles”
I often wonder if she craves more “cuddles” because of her lack of them in the beginning.
What do you think?
I think now she is much more aware that something isn’t quite right because she is craving even more affection (if that is possible) She knows that she is going in for her surgery and Tom is going to fix it for her, but I don’t know!

As hard as it is to try and explain and prepare her for it and watch her frightened eyes as she goes under, I know that every time I go in I come out stronger and right now I feel like I need that strength for the next chapter.

For each time we go in we walk out stronger, more inspired, more compassionate and a more united family.

Her surgery was booked in for 2 weeks ago then got delayed due to a more critical baby. Some people’s thought process was “It can’t be too serious if they are delaying it” to you I say this-
I feel sorry for you as clearly you are from another planet. Clearly you weren’t there in the beginning; you didn’t see what I saw.
Do you grasp the reality of what life is about I wonder? You aren’t there every time she chokes, stops breathing and vomits everywhere or every time she goes blue because no air is going to her lungs. It’s real, it’s very real. Whether you choose to believe it or not.

Maybe it isn’t “as serious” but I know that because I see and I breathe and I feel for every sick child and their parents because I know what they have been through and what we continue to go through because whether it is or isn’t as serious as the next child we move on but we don’t forget and we never really get over what happen.

BUT make no mistake I am so incredibly grateful to live and to tell my story.

My TOF Baby Starts Solids

It's not the consistency it's the content!

What is usually a happy time for a parent for us well we are shit scared!
So many things are going through our mind. OK are my CPR skills up to scratch, OK don't panic you'll scare her even more.

For us the puree wasn't too much of a problem although it did take her a long time to get the idea of eating, like a month. Then at 7 months we tried mashed food Hmmm not so easy for her. That's when food started to get stuck, choking the red face you know how it is.
But we let her guide us as to when try something new until we eventually got to grains of rice, peas and corn. We were still pureeing meat mainly mince with gravy was all she could tolerate. She stayed there for ages until she was 18 months or so.

Amanda her paediatrician was a god send because you know when you take them to the Health Care Nurse and they ask about solids and where they are at. They get worried when you tell them that they can only eat mash! Amanda told me this "It's not the consistency it's the content don't worry!"
So I relaxed with it because that gave me peace of mind. But you know what? It doesn't matter, who cares as long as your child is well nourished then who gives a flying rats as too what texture it is.

THEN because I relax well! She relaxed too and she started to eat chunkier food like mince with gravy, some pasta's, pieces of bacon and sandwiches! She was about 18 months old before she had a sandwich. WOW it was great.

Still now Maddison is nearly 3 she can't eat most meats (unless chopped super fine) we have a sauce with everything. Most fruits she can't eat even though people say but it's soft! I feel like smacking them across the head! Or when they try to sneak and give them some bread custardy thing and they think it's just hilarious but really you would love to give them a treat like that but the fact of the matter is you're not doing it "because they only eat healthy foods" you're doing it because it will get stuck and they will choke and it's as simple as that!

My daughter is 3 and she has never had a lolly! Even her GP went to give her a jelly bean after I just finished telling him that she is a TOF Baby and blah blah blah.

Then on the flip side you have my poor old Mum who freaks out if she coughs and I say "Mum relax she's OK don't freak out then she will freak out"
But at least she is more then aware and I love that.
It's a fine line you know you don't want to treat them any different or give them any special treatment but at the some time we are accountable and responsible for them so we have to be cautious.

So looking back my advice is:
* Trust yourself and let them guide you
* Relax with it and don't worry about the consistency as long as the content is good.
* Make sure they are progressing if you haven't read My TOF Baby Strictures please read it's a must.
* When they do choke because they will, as hard as it is STAY CALM and just encourage them to bring it back up. Make sure their food swimming in a sauce. When they get older you can encourage them to have a drink to try to push it down instead of throwing up all the time. Now Maddie says "Towel Mummy towel" that means she needs to throw up! Isn't she graceful!

But at the end of the day it isn't anymore scary then what we have already gone through.

Maddison goes in on Wednesday for another dilation so I'll let you know how she goes.

When my TOF Baby Strictures..

The first time Maddison strictures it was dead obvious.
She was 9 months old and she was having her pureed dinner and she choked (which is normal, as you know happens ALL the time)
She then couldn't breathe and she turned blue. So I lay her over my knee pat her back and she brings it back up.

Then she starts choking on her bottle which is of course is liquid. So really, totally crazy and time to go and see her surgeon Tom.

It's a day surgery and Tom says it's very easy a minor surgery. She'll be on puree for a couple of days then back to normal. Great, a bit scary but great.

We go in for the dilation she goes under a general anesthetic they go down with a camera via her mouth insert a balloon and blow it up to stretch her join.

It all went really well and off we went home. I wasn't expecting the recovery time to be sooo painful for her. Chris had gone back to work because we thought it was a minor thing. Not so much!
She was crying hysterically, screaming in pain for 2 days straight. It was horrible for both of us!
But on the 3rd day she started to get better. So that was that.

So when is it time to go back?
This time NOT so obvious. We had only had appointments with her paediatrician and said she was doing great. When we told her what she can eat and what she can't, it was all fine.

In a normal week (she is nearly 3) She will choke at least once. She can't tolerate meat only small pieces of chicken and fish. She can still only eat pureed fruit, lollies are a no no, soft bread no, any big pastas like penne not on your life.
Raw carrots forget it!

If she has a cold Oh my goodness it gets worse! and you know how easily a TOF baby gets a cold. For a normal child it won't be so bad but for a TOF child it's the worst thing ever!

But we were told it was normal so 18 months go by and we have an appointment with Tom. We knew she needed another dilation it was our gut feeling so it wasn't a shock when he said she had too.

WHAT did shock me was this: I asked him 'OK at what point should we bring her back in?'He said 'Most TOF parents fall into the category of safe. Parents give the TOF babies what they know the can tolerate but a TOF baby needs to progress in their foods, so we have to try them on new things and if they aren't or can't then it's time to go back for a dilation!'

What The? I do give her new things but if she struggles and can't then I will stop. She has been doing this for 18 months. She should of had another dilation 18 months ago!
Well as I felt like the most terrible parent in the world!
And Chris said "Renee there is no hand book on this, we were told it was normal. it's not your fault"
I know that, but at that time I really felt bad for my little girl!

You know when EVERYONE around you bangs on about how good she is doing OR they totally forget about her condition because they can't SEE it they think it's not there. When you say no she can't eat that, they think it's because you don't want her to junk or you're just really over the top with her.

You feel like smacking them over the head don't you!

It is there and it will ALWAYS be there and that's OK because we have become expects at managing it and monitoring it.

THE GOLDEN RULE IS Anything with your TOF babies development see your paediatrician. ANYTHING with their join or eating see your surgeon. If they aren't progressing go in they will need a dilation.

My TOF baby is Home

This is undoubtedly the happiest, saddest most nerve racking day of your life!

Maddison at 6 weeks come home with her nasogastric tube in. So we went through ‘the training’ of how to change it and test it to make sure it was in her stomach.
I wasn’t very good at this the tube kept on curling when I tried to get it over the bridge of her nose and go down into her stomach! Chris was good at it though.

We were soooo happy when she drank 20ml on her own. Then slowly slowly she took more and more. As you know they forget how to suck during their time in hospital. Maddison was 10 days old before she even had an oral feed.

At times I found this more stressful then the surgery, oxygen and morphine. I had the breast feeding nazcey on my back so I avoided her like the plague because she stressed me out so much.
You know when you have such a sick baby and everything being so out of your control that all you want to do is breast feed to give them a kick start when they can finally eat.
So meanwhile we’ve been expressing for weeks our freezer no longer stores meat but milk, milk and more milk!
I drowned my poor girl every feed, so much so I would have to change her whole outfit.

So once I decided to keep expressing and teach her to eat through a bottle that way I could control the flow more. I felt better and more in control and because I wasn’t stressed out so much and I think she felt that and she relaxed and in return she drank more. So eventually she could drink on her own. Still not as much as want she should but enough that she was putting a little weight.

So then comes that day THE happiest day ever when the tube comes out! We took so many photos because she looked so different. No longer would people stare at her in shops and follow us just to ask us what was wrong with her. I felt normal! I could just focus on being the best mum I could be.

Solids! ARHHHHHHHH that’s another story.

My TOF Baby

Maddison my 2 ½ year old was born with Tracheo Oesophageal Fistula with a distal Oesophageal Atresia. What is it?
It is where there is an abnormal connection between windpipe and stomach. The picture below should paint the picture.



When Maddison was born she was in Special Care they thought it was “wet lung” so when I had her obliviously they detected a problem but we were unaware this being our 1st baby, so we were like ‘Oh OK no worries’ I went up to my room and Chris went home to sleep.
Then the Doctor come in and said “Have you ever heard of Tracheo Oesophageal Fistula with a Oesophageal Atresia?” my answer NO?

So he draws me a picture and I understand what was happening, it sounded all too easy really!

She got transferred to the Royal Children’s Hospital where she got operated on when she was 24hours old. How they manage to open and go in between 2 tiny ribs get to her Oesophageas and repair something that is the size of a Prima straw and repair around it so there is no leaks, Crazy!

So then it’s the recovery this I have spoken about before in The Chaser= Bad Comedy, so feel free to read about that road!

But 1 in 3000 babies are born with Oesophageal Atresia so we are not alone but sometimes months and years down the track when everyone has forgotten about their condition we do feel alone. So what happens down the track, when you get home, when you start solids, when they stricture and when they stricture again.

I will continue to write about our journey, our experiences, what I’ve learn t along the way even share recipes! So we don’t feel alone in our journey.

The Chaser= Bad Taste Comedy

I was as shocked, disgusted & appalled at The Chaser's recent comedy skit (and I use the term comedy VERY loosely)
When I first seen it I had tears in my eyes and I felt sick to my stomach.

Funny it was NOT!

It makes me sad just thinking about it. Their apology even worse, please could you at least remove the smirk from your face?

Maddison was in ICU Neonatal Unit for the 1st 6 weeks of her life and for someone to make a mockery of that is just disgusting.

I challenge you to go in and spend your EVERY waking second in there for 6 weeks and tell me the parents and the kids aren't deserving.

You know, you come across angry & rude people everyday for the most trivial reasons. But the people inside any Children's Hospital are the most positive, genuine & happy people you will ever meet. If anyone has a reason to have a chip on their shoulder it is these people. But they don't!

When I would walk to Maddison's room I walk past kids with cancer, kids with head braces, children being wheeled into surgery ALL day long.
I get to ICU and they are doing CPR on a baby and I can't see which cot they are around and I pray to god it's not Maddison and I'm so scared and grateful that it's not her, but it is someone's baby. Then I feel guilty for being relieved that it's not Maddison,another Mother isn't so lucky. I seen babies die everyday and you see their families crying and completely in despair. Tell me they are NOT DESERVING!

Instead of being at home, being sleep deprived and being swamped with visitors. I am able to 'pat' my girl and on a good day I can hold her for maybe 5 minutes. I am learning how to put a nasogastric tube up my baby nose down into her stomach just so she can eat. Watching her in so much pain and she is hysterical but I can't pick her up.
Where everyday it's a count down to try and wean her off oxygen, morphine then eventually Panadol. Then drug free, that's a great day. Now it's getting her to feed on her own.

But I got to take my daughter home. I'm one of the lucky ones and I feel so lucky so grateful that I can. Having seen so many that haven't been so lucky.

SO please Chaser Boys I challenge you to face every parent that has empty arms and heavy hearts that their baby isn't deserving!