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A heartbreaking choice (Hollie’s Story)

I would like to introduce Hollie Gilmore-Lindroth. This lovely lady and I went to high school together. We lost contact for a while after school ended until a couple of years ago when our eldest children were in the same class.

In the years we were disconnected, she was placed in a horrible scenario. She has kindly agreed to share her story. It is written in two parts. The first was written a week after she lost her daughter, Angelina, and Hollie shared this part on the bubhub.com website. The second part was written seven and half years later.

It’s not a nice story. The loss of a child never is. But we wanted to share so that the story can be seen by those going through a similar situation, and hopefully it can help them.

Bella 🙂

PART ONE:

Hi. I’m Hollie and I am going to share my story with you about my 3 children, particularly my 2nd little Girl Angelina May, born and died 7th September 2005.

It all began on the 16th of April 2005.
A new life began that night and was unknown to me for 2 weeks. My husband and I were overjoyed but a little bit afraid of how the pressure would affect me, as we had a 7 month old at the time( my daughter Casey, now 15 months). With me only just turning 20, I was and still am very young.

With the pregnancy came depression and all-day morning sickness. As we were in a bit of a financial hole we couldn’t afford to have the 12 week ultrasound and only opted to have the 20 week one. My belly grew big very fast and a lot of people joked that I was having twins(and secretly I thought I was too).

Then came the 20 week ultrasound, I was 19 weeks and 1 day. I was all excited sitting in the chair holding onto my hubby’s hand when they delivered the news….my baby had a severe case of spina bifida. I bawled and wondered why this had happened to us and what we could do for this baby.

We were rushed to Perth for extensive tests with the head of radiology for Western Australia. She told us that we had a baby girl but she will never be able to walk, go to the toilet by herself and possibly never have kids. That wasn’t even the half of it, we could probably handle the physical side of things (just). They said the fluid on the brain was borderline severe and was most likely to get worse, resulting in them having to drain the fluid before she was born which 90% results in death. Plus they couldn’t see the formation of the hemispheres of the brain through the fluid.

We were told we had to make a decision in less than a week. Being Christians, we didn’t want to take this life away, but we thought what sort of life would she have here?? We have a chance to take her future pain away and we would see her when we return to Heaven.

With much pain and emotion we decided to let her go and she was born on the 7th of September 2005 and surprised us and the doctors by surviving for 1 hour and 40 minutes. What a blessing!!

Her due date is the 23rd of January 2006 and it really hurts to know that I will never get to see my baby girl, ANGELINA MAY, grow up, but we know she is safe and happy in God’s arms.

If you are reading this, and you are pregnant, or are trying for a baby, please, please, please take the folate, and have all the tests because everyone is at risk.
To all the parents who have children with disabilities: I really admire you and the strong personality you need to be a parent of a child with special needs. Please don’t be angry at us for choosing to let her go. She was and always will be our daughter and a part of our lives.

PART TWO (7.5yrs later):

So within a year I watched my mum give birth to my baby sister late Nov 2005 (yes, we were pregnant at the same time). This was really hard but I was so thankful to be involved and my sister and I now have a very close connection.

Shortly after my sisters birth I went downhill, and ended up at the hospital for a few weeks and diagnosed me with Severe Post Natal Depression, Anxiety and Post Traumatic Stress. Needless to say my marriage started to falter and we separated not even a year after we lost our little girl. It was extremely hard on both of us as a young relationship, with a little girl to look after, whilst grieving for another took its toll.

My oldest daughter and I moved back down the South West of Australia to my hometown , so I could start fresh and get my life back on track. After a few years I met a man who I thought was amazing and be “The One” and we decided to get married, and he knew the hoops I needed to jump through to have a healthy baby and all of my emotions that will come with trying, conceiving and carrying another child after Angelina.

5 years after Angelina was born, I fell pregnant. Only 8 weeks into the pregnancy and a few months away from our wedding, he decided he did not want to be a husband or father, and left. We were heartbroken and the pregnancy that followed was horrific. I found out early that I had carried twins, sadly one died in the first few weeks.

After numerous scans and all the meds I needed to take to prevent Spina Bifida or a Neural Tube Defect, a specialised scan in Perth with the same Head of Radiology that scanned Angelina, performed the “Big Scan” at 16 weeks that told me I was having a healthy baby girl.

At 24 weeks I ended up getting severe Braxton Hicks contractions which rolled into early labour. It was stopped but happened again at 30 weeks and 35 weeks.

I was so scared but delivered my healthy baby girl into the world in April 2011.

There isn’t a day I don’t think about Angelina and when people ask “How many kids do you have?” I generally always reply “Three. Two here and one waiting for us in heaven.” If I didn’t have that hope that I will see her again, it would destroy me.

So far I have had a few scares with my oldest girl, now 8.5 years old and my youngest girl 2 years. But that’s another story…

 Hollie:)

The “Mara” family’s story- Part 2

Remember Carly Mara? She wrote some time back about her daughter, Ava, who was born with a cleft lip and hip dysplasia, then they found out she also had cystic fibrosis.

Part One of Carly’s story explained the emotions of when Ava was diagnosed with CF.  Part two is going to explain Ava’s cleft repair.

I can sit here and tell you how amazing and powerful the following will be. But honestly, I cannot find the words that best explain this following piece. Carly’s ability to explain the emotions she went through has you feeling like you are sitting beside her, experiencing it with her.

Bella 🙂

Ava's photo in-utero

Ava’s photo in-utero

Monday 7th February at 1:15pm, 2011 was the day of Ava’s Cleft Lip repair. A day we’ll never forget!

I’ll just take you back to the day we were told of our baby’s cleft.

 

“Your baby has a DEFECT on her face” were the words that came from the sonographer’s mouth. I froze.I don’t think I thought one single thing at that point. I was totally numb, gutted and crushed. A defect?!?! What kind of defect?!?!

They couldn’t tell us much more than that, and oh, they were pretty sure the baby was a girl. (That’s the only reason we went for that scan, to find out what sex we were having.)

From then we had to have quite a few more scans at a place in Leederville, where they do very detailed scans and specialise in clefts and the like. We were given a picture of our baby’s face at out next scan in which you can see a line from her nose down to her lip, but no-one could tell us exactly how big, or if her palate was involved, just that they think its might be 2mm long but they had to keep monitoring it every few weeks to make sure it hadn’t grown or changed.

Probably the worst thing I did, a lot, was Google images of Clefts. Oh my gosh!! Not a good thing to do, but apparently it’s the first thing any mother does when they receive this kind of news. There are some awful pictures out there. My hubby would always tell me not to Google, but I HAD to, I had to try to find the kind of Cleft out baby had…even though I knew deep down, I wasn’t going to know until she was born. 20 weeks of not knowing, it almost killed me then as the weeks got closer to her birth, I started getting anxious and just wanted her here it was torture!

Finally, on the 21st August 7:52pm, Ava arrived.

They placed this very warm and slimy baby up on my chest. I looked down at her beautiful little face… and there it was. Everything from then on is a blur, but my reaction to her precious little mouth was “Oh my gosh!!! her lip, her lip, her lip, look at her lip!!!” as I was crying loudly. (I only know this from hearing it on her birth video and my hubby telling me.)

It was like being sooo happy, the happiest you’ve ever been, and yet grieving at the same time. It was bitter-sweet. The pediatrician had a look at her mouth and said there was no palate involvement, just an incomplete cleft lip, (incomplete means the cleft stops just before the nostril) which was a weight off my shoulders, cos that meant to transfer to PMH for her to be fitted with a bonnet to pull the lip together, but still the possibility of not being able to breastfeed. which I really wanted to do, but thank god she was straight onto my boob and I felt more relief.
I’ll be honest, it took me a good few hours that night to get used to her Cleft, I couldn’t stop touching it, kissing it and crying in sadness that it wasn’t supposed to be like this.  She wasn’t meant to go through this. It’s just not fair. Grief of what have been…and happiness because she was finally here.
It was a long few months of getting her weight up for surgery. They usually repair Clefts at about 12 weeks. but due to CF,  Ava hadn’t put enough weight on. She had to be 5kg for surgery to go ahead. We finally reached that goal when she was 5mths! (Mind you from that 5kg mark her weight gain zoomed!)

Definetely a beautiful smile that lights up a room!

Definetely a beautiful smile that lights up a room!

Surgery day, fasting and a very sad baby. We were once again thrown through a loop of emotions. By this time we loved Ava’s Cleft sooo much! They say Cleft babies have the biggest smiles and that’s sooo true! The kind of smile that lights up a room, it was beautiful.

Not knowing what her mouth was going to look like minus the cleft, then what her face was going to look like. The shape of her nose will change too.But we had faith in our surgeon Dr Vij Vijayasekaren. We knew she would be even more perfect.
Chris and I kissed Ava’s face and mouth over and over and over, took sooo many photos with her while we waited for her to go in then it was time to hand her over (I don’t think that part will ever get any easier). A couple of hours later it was time to go and see her in recovery. I had butterflies and felt like I was going to be sick… but I was excited too! That walk over to the big bed with a tiny little dark-haired baby was sound asleep on it felt like it took hours. There she was, that little baby who was already every inch of perfection to us, but now with her new mouth.

After Ava's surgery

After Ava’s surgery

I cried and kissed her so gently. The part that startled me a little was the stitches, they were black. She also had nasal stents which I wasn’t told about, so that was a bit scary looking. Her face was really shiny her eyes puffy and lips swollen. It was heartbreaking to see her look like she was in so much pain.

We were taken back to the ward a little while later, where we just held her and cried. Then the fun began trying to feed her, no more breast… we had to use a special feeding bottle with a spoon on the end of it. You would squeeze the bottle gently the spoon would fill up and you’d have to master the art of tipping it into your baby’s mouth. But because she couldn’t move her lips much every second mouthful would dribble out which after a few hours gave her a nasty looking rash under her chin and her bibs just kept getting soaked. Even the nurses had to really get used to using the bottle to feed her. Ava had splints on her arms to stop her from pulling her stitches. It was sad because she loved sucking her fingers, but wasn’t able to, so she would cry, but then crying

Speci

Special feeding bottle after surgery. Lots of practice needed!

would hurt her mouth. The poor little sweetheart was in a really crappy situation, but there was nothing we could really do. The most comfortable way for her to sleep was on a U-shaped pillow with her arms stretched right up above her head… now that was cute!!

***TO BE CONTINUED***

Keep an eye out for the next installment…and new photos of Ava, the feisty two year old she is now!
Bella and Carly 🙂
xx

MacFarlane family- Part 2!

Welcome to another guest blog post.
You may remember Helen from Part One, which was about her daughter’s diagnosis with cystic fibrosis. Have a look back to remind yourself with the story.

In this post, she touches on feelings and relationships. I can personally relate to most of it.

Hope you enjoy the latest installment of Helen’s story!
Bella 🙂

When our daughter was diagnosed with CF, I felt that I was impacted upon the most…can I say that? Can I be that selfish… I mean…I felt that I owned the disease, I OWN the disease. I am the Mother. I am the keeper and the protector. This was of my own choosing as my daughter didn’t have a voice and a choice, and still doesn’t. And, until she does, all her hurts are my hurts, her successes have become mine….and sadly her failures too…her lungs have become my lungs….

We left that hospital after the diagnosis with incredibly heavy hearts, a head full of information and fists full of literature. We went home to my Mother’s house expecting tea and sympathy, which we got, in moderation. I didn’t expect everyone else to be grieving too. And I soon found that I was consoling everyone else. My Mother, my sisters… all except my husband and my son. Ben dealt with the disappointment as he has dealt with other disappointments in his life. He didn’t say much at all and spent weeks processing the information whilst rubbing my back at the same time.

Grief is a very personal thing…a lonely place….a bleak club with a free membership.You don’t really want to share it with people who haven’t grieved such a loss. How can they possibly understand? And to me, this wasn’t about the death of somebody. This was the death of so many other things….expectations, lungs, pancreas…This was about sitting back and watching someone slowly die of something, and being powerless to do anything about it.

You cannot PASS GO with grief. It’s a rite of passage. You have to swim through it., and you have to stay afloat with a child that needs you to be seriously afloat….not just floating really….SWIMMING….with a team…crossing a channel…but a REALLY BIG CHANNEL!

To add to Helen’s analogy: Friends, family….specialists, are like an extra piece of padding to a life vest…helping you to get across that REALLY BIG CHANNEL

I read somewhere that having a child with CF is like watching someone drown out at sea and you cannot get out there to save them. It was the death of my expectations. The death of the constant cravings of being a normal family despite our dysfunctional past. The death of having the luxury of 2nd child parenting confidence that I was so looking forward to.

We now had to include a lifestyle of medication into a family that never took pills for anything and abhorred chemicals. We had to change our philosophy on diet and turn our back on the concepts that salts and fats are bad for you (they were actually going to save our child!) all without influencing and compromising our first child. (Speaking of which, my heart grieved for Christian and the new kind of sibling rivalry that evolves with having a sick sister…..and the grieving list goes on….)

This grief was to take place in a small country town, miles away from home, amongst strangers and in the spotlight! We were a very private family. We have grown up this way through our own families…protective…insulating. To have ourselves exposed was awkward, embarassing…vulnerable. That was to, and had to, change. We had to let others in: specialists, psychologists, social workers, friends….strangers.

The first few months after diagnosis (“AD”..I call it…there is a definite “before and after” diagnosis on our timeline) was wracked with paranoia and isolation and hysteria. The isolation was devastating. I was too scared to take Asha to Playgroup. I honestly thought it would be at a great cost to her health if I did. And when I did finally go, I still felt isolated because every lady there had incredibly healthy children and I did NOT. I felt that I was running a completely different race to everyone else. That added more salt to the wound and a sense of failure had set in. I had to explain my “story” numerous times to people….people who asked after Asha…my husbands work colleagues, the green grocer…..my friends. The hardest thing was to console my closest friends, those that knew that I had already fought hard, to be me and still had such a battle ahead. To hear them cry and know those tears are for you, and your little girl are the most devastating. I mean…how do you “hold” them when they are on the phone?

I did manage to secure an email address of another mother who also had a child with CF. I began to write to her. She was an expatriate living in Zimbabwe. Although THAT is another long story, her emails are what got me through the early days especially. I longed for her emails and they brought me a huge relief and validation of my own feelings, which were confusing and confronting. She became very close to me and knew exactly what to say. There were no emotional boundaries with Trilby, and I believed, and still to this day believe, that we can cross them with ease with an incredible sense of trust.

I liken my relationship with Trilby to a buddy breathing system that deep-sea divers have. You are in the abyss…..and breathing easily…..knowing that your dive buddy is there, with a regulator…in case you can’t breathe. There were many times in the early days when I couldn’t. No one knew that except Trilby, not even my husband. The beauty of our relationship was that we both grieved together, like a Venn diagram…..on our own but intersecting in the middle…..

Venn diagram of sharing grief

TO BE CONTINUED. Thanks Helen!

🙂

The “MacFarlane” family story- part 1

Here is another diagnosis story for you all.
I met Helen MacFarlane on Facebook little more than a week ago through Carly Mara. She has happily shared her own family’s diagnosis story as another guest blogger. Again, we are going to break it up in parts. Here is part one…

I hope you enjoy this powerful story as much as I have!

Bella 🙂

On every shooting star I use to wish for a child. And when I had my first-born, Christian……I felt that I only wanted one as I couldn’t possibly have enough love to love another….

And then as I reached my late 30’s, we decided that maybe we had room for one more. We both entered childhood with trepidation, both of us having incredible dysfunction of an abusive nature as children and not wanting to relive the pain of that again, by having our own. Pleasure and pain…….

Falling pregnant with the first child was slow, falling pregnant with my second was just as slow with a painful miscarriage in between. Again I wished on my stars that I would have a child, a little girl, a doll to dress up….I prayed and I wished and suddenly, amidst the familiar biliousness, I was holding up a stick with pee on it, exploding the words…”Im pregnant!!!!” to a surprised husband and a pleased, but slightly embarrassed neighbour.

My pregnancy this time was strange. Can I call it that?…..I tended to spend long periods of time in my pyjamas, I sulked and I was covered head to toe in a very nasty and raised, lumpy rash. I have never seen anything like it…it was angry and weepy and itched so bad, despite my attempts at an “organic” pregnancy, I was medicated to prevent scratching myself to death and bleeding in my sleep.

We decided with this pregnancy that we would also find out the sex of our child and also name the child early, so that “jelly bean” would have an identity. We soon discovered that we were having a girl and we decided to call her Asha Rose. Asha – because I love anything Indian and her name means “hope” in Sanskrit and “Rose” for my obsession with roses…little did we know how symbolic her name was to be…

My labour was intense and very quick. I discovered during the 1/2 hour drive through a very dark country road why the bar above your head in a 4WD is called a “Jesus Bar” I also learnt that just because you walk in reverse into a labour room, doesn’t mean you automatically get an epidural!!!

So….there I was….delivering a baby…drug free….with a husband who clearly stated earlier in the pregnancy…and I quote…”I do not want to go down south”…and I don’t mean, on holiday……we were already living “down South”!!!!

The beautiful baby, Asha

The beautiful baby, Asha

I recall afterwards feeling very empowered. I was crying, as you do, after the labour..lamenting to the midwife…that I had been known as “stupid” for so long, by my stepfather…and I couldn’t believe that I did THIS amazing thing and that no body could take that away from me…I cried because I did something right and I was very proud, of myself….my reward was Asha.

I recall as well sitting upwards, cross-legged on the hospital bed, with Asha on my lap and I was admiring how amazing she looked, that this baby had been gifted to us. I kissed her face a million times, almost to reassure myself that I wasnt having a dream and it was then that I noticed she tasted salty. I looked out to the window across at the beautiful rose garden and admired the roses…..and didnt give that a second thought. I was amazed that she was sweaty and it was 2 degrees outside!!.

When I handed her over to the Nurses for the Guthrie test, I didn’t give this a second thought either. I had the air of confidence of a second time Mum. “Just dont drop her on her head”I probably thought to myself as I was grateful for the cup of tea and Scotch finger biscuit left by the Orderly.

She came home wrapped in a beautiful purple wrap. She was given the appropriate attention that a newborn expects, food, warmth, shelter and bundles of love. I was casual and confident this time. I breastfed her whilst I checked the mail, watered the plants, answering the phone….I was marvelling at how easy she was…and I remember bragging to someone that this baby being second WAS easy….but I was very wary…..this was too perfect, something doesn’t feel right. I even voiced my concerns to a close girlfriend. She reassured me that I was worrying with no concern and to enjoy this special time. I continued on, with this gut feeling.

Then Asha developed a wheeze that wouldn’t go away and would scream at 2pm every afternoon and lift her legs to her chest. After she filled her nappy, the pain seemed to subside. I did mention to my clinic nurse who made notes in the “yellow book” and then she talked about colic and wind pain. The wheeze? Perhaps a cold?

Then we got the phone call. Asha was 5 weeks old. Our Doctor in Bridgetown rang us at home and I answered. He was using words like ..disease….no cure….Cystic Fibrosis…PMH….team of specialists….bed waiting……physiotherapy….normal lives….management. And then, at that exact moment….I actually felt my heart break……I felt “let go” by God and I felt like I was floating…in a bad dream. I was crying…..uncontrollably…..wet…..heaving…cannot breathe….oh my God…….Why?…wanting to vomit…..wanting to scream…needing…my Mum….vomit…..no breath….And..Im doing this, in front of my 4-year-old and my husband. Very very private feelings and emotions…..in public view. Once I had composed myself and comforted my husband, we silently went through the motions of heading up to Perth the next day. My son, Christian came over to me as I had my head buried in my arms, he touched me on the shoulder and sang the Good Night Song that GWN play every night. Fat Cat jumps into a bed and a song is played, poxy one…to the tunes of a keyboard… He sang this song like an angel….and then gently said to me…”I sang this song to you, to cheer you up….I love you”……It was his way of providing me with a safe place to hide…..I hid in his flannelette arms and cried some more….

We drove 5 hours to Perth the very next day and once settled into our room at PMH , the onslaught of specialists attacked our very private lives and opened the guitar case of emotions and plucked at every string. We were sitting on the bed dumbstruck at a new vocabulary with words such as enzymes….physio…percussion….malabsorption. I should have been listening but instead I’m looking at them blankly thinking “Why me? Why us?…….I ate the right foods…..I did good deeds……Ive already suffered at the hands of others……why are we being punished???” I met nurses Liz and Charlotte and cried in front of them…..Dr Wilson and cried solidly in front of him too. My emotions were raw and I felt incredibly vulnerable.

To be continued…

The “Mara” family’s story- part 1

Some time ago, I put the call out into cyber space, for any parents of children with special needs to share their stories.

It wasn’t only limited to Cystic Fibrosis or Global Development Delay. Anyone who wanted to share their experiences as a way to vent, or hopefully help someone in a similar situation, were (and still are) invited to tell their stories.

The wonderful Carly Mara accepted the challenge 🙂

Her daughter, Ava, not only has CF, but was also born with a cleft lip, and was also dealing with hip dysplasia. While all this was going on, Carly’s father had a stroke.

Her story has touched me. I can relate to so much of it (well, the CF side of it anyway!) I found myself nodding along as she describes her emotions. She has explained them so much better than I could!

Thank you so much, Carly, for sharing your family’s experience (and providing pics)

Follow her story. We will be publishing it in installments.

Bella 🙂

 Here is part one of Carly’s story….

 

Meet baby Ava. Isn't she adorable???

The 14th September 2010 was just like any other day.

We had a 3 week old baby girl who was born with a Cleft Lip and was also in a froggy brace for Hip dysplasia. Her cleft was discovered at my 20-week anatomy scan(another day I will never forget!)

 I was devastated. I just couldn’t believe this had happened to our baby girl’s face! It was hard enough getting her here to begin with, being that she is our IVF miracle I was sure that was the biggest hurdle we were going to have to overcome! So once I got those two little lines, and the confirmed blood test, I thoughtWOW. We did it!”

Little did I know there were three things waiting for us around the corner, the biggest blow coming to us last.

I remember the midwife coming to check on Ava. and also to do the Guthrie Test. It’s funny. you know, cos when I think back, the midwife handed me a pamphlet explaining the Guthrie Test, how it was done and what it screened. I had a really quick look at it and placed it on the table. My mother-in-law said “Have you read through it?” I said “Yeah” quickly, then the midwife said I should sit down and have a read.

Once again, I just flicked through it thinking to myself “Nah it’s all good. We’ve got the cleft lip and the brace (which was fitted at three days old)…there couldn’t possibly be anything else.”  So the whole thing just left my head. Test was done, Ava was looking well and doing everything a newborn should be doing so all was great. I never gave that Guthrie test another thought.

We knew Ava’s Cleft would be repaired at 3-months-old, so we were concentrating mostly on that, trying to prepare ourselves mentally and emotionally. So the morning of the 14th September, I was sitting on my bed, Ava was asleep and my hubby was out in the kitchen. The phone rang, he answered it. I could hear him talking for a while but couldn’t hear what was being said. Didnt really think much of it. Then he hung up walked in and said to me ” That was a lady from Princess Margaret Hospital. She said Ava has tested positive for Cystic Fibrosis”

I just looked up at him and said “What?”

Ava in her brace for hip dysplasia

I was dumbfounded! Mostly cos I wasnt too familair with CF. I knew it existed along with a million other diseases. I knew it wasnt a nice one, cos I remember a conversation with my mum years ago talking about her nursing years. She said that from things she saw she never wanted to have a baby with four particular diseases, one of which was CF.

I asked hubby to tell me the whole conversation, so he repeated what he just told me. I demanded more information, but I think he was stuck too, not knowing exactly what had just happened. But luckily he wrote down a phone number, so I called and got Liz on the phone. She explained that the Guthrie test had come back positive for Cystic Fibrosis. She gave me a rough run down of what it was. I just kept asking her if they were sure, like, really, really sure. Is it possible they’ve made a mistake? Are there any other tests Ava has to do to further confirm it?

Liz told me about the Sweat Test. I think I was on the phone to her for about twenty minutes, going around in circles pretty much, trying to comprehend what was being said, and at the same time flat-out rejecting it. I wanted to scream and cry. I also felt totally numb and angry and confused.

I think about a week or two later we had to go to PMH for CF Education, woah! What a head spin that was! So many people, soo much information. All so scary, confusing and overwhelming. I think it was even harder for me at the time, because the same day as Ava’s diagnosis, my dad had his second stroke, so we were between Sir Charles Gardiner Hospital & PMH for quite some time.

Thank God we were given so much literature, cos there is no way in hell I could have retained much information. Everyone time someone walked into our little room to talk to us about their part in CF treatment, I felt defensive and a little stand-offish, like it was their fault we were there. I felt some kind of resentment towards Liz for calling us that day too. Every time we would get a phone call or appointment letter I would feel angry because I just wanted us to be left alone. I had waited sooo long to finally have my little baby, and I was having to share her with all these people.

Being shown all the physio positions and all the medication Ava would be on was very overwhelming. Where physio was concerned, for a few months, it wasnt at the top our priority list because Ava had to be in the froggy brace for 23 hours a day (it could only come off at bath time). Our physio understood, so that was one less thing taking up space in my head.

 Our first lung function test was a whole lot of drama for nothing. Very stressful the first time around. The sedative didnt do its job. Ava was screaming and crying, which was upsetting me. I hated seeing her have to go through all this stuff. At one point, hubby was holding Ava in one arm and vacuuming the main desk in Respiratory Department, trying to get Ava to sleep (she was a white noise baby for quite a few months. I spent many hours with the blow dryer going or the vacuum putting her to sleep, even at 3am!) But unfortunately this day at PMH it just didn’t work. So after an hour or so, we decided it was time to go home, thank God! Once home, Ava slept soundly -of course!

Our first Bronchoscopy was an experience too!

Fasting a baby is horrible. Being in the waiting room with other parents and their children, waiting to be called in, while your walking the floors with a screaming baby is no fun at all! Plus being a bag of nerves knowing what is going to happen, your mind going over what they might find in those little lungs, it was really starting to do my head in! Then finally we were called in. The walk down the corridor felt so long, cuddling Ava soo tight and giving her the biggest kisses as I hand her to my husband, Chris, so he could be with her when she goes to sleep.

I just felt sooo helpless and guilty, and wishing I could take it all away from her, or that I could go through it all for her. We waited in the Friendship Room. I finally sucked my tears up and it was all over. Into recovery and there she was, my tiny baby, sound asleep. So the tears started again. The results from the bronchoscopy came back fine.Yipeeee!

 One bronc down, Cleft lip repair to go!

To be CONTINUED……Keep an eye out!!!

 

 

***Extra Notes***

 The nurse mentioned in this installment, Liz, will be known by West Australian CF families. To those who don’t know her, she is a clinic nurse on the Princess Margaret Hospital CF team. She is the “guru” CF nurse.

The” Friendship Room” mentioned, will also be known to families who have been at PMH. It is a waiting area for parents to sit in while their children are in surgery. It is run by hospital volunteers who serve tea/coffee, provide plenty of magazines and conversation. They receive the call when your child is out of theatre, and escort you down the passages to where your child is in Recovery.

two little letters

Who would have thought that two letters out of the alphabet would cause major upheaval?

Two letters in specific…CF.

These two little letters, to those “in the know”, of course, stands for cystic fibrosis.

Cameron, 12 hours old, before diagnosis

Cameron, 12 hours old, before diagnosis

My youngest son, now a cheeky 21mths old, was diagnosed with this when he was 4 weeks old. It was a complete shock, while a genetic disease, we had no idea that it was in our family, or that we were gene carriers. Looking back on those first four weeks of life, everything makes sense.

My son was born one day early, after a quick and intense 3 hour labour, he was born a healthy 8lb.

From that very first morning he was born, he was constantly unsettled. He fed constantly (every hour, day and night) and suffering from what we thought was colic, as he was bloated, windy, and generally upset. Of course, the dirty nappies came along with it. The smell…no words could describe the smell. Lets just say that we could smell him at the other end of the house. But this was happening at least a dozen times a day…well more than a normal baby would. But we shrugged it off, figuring it was my breast milk, or that my memory of my three older children at that age was fuzzy.

The coughing started when he was about 3 weeks old. It sounded like a normal cold, and of course, at that age, there is next to nothing you can do. The other kids had colds at the time, so we figured it was just that too. Despite the coughing, I didn’t stress too much, as he didn’t have a fever to go with it. I figured it was just a virus and the doctor would just tell me to do exactly what I was already doing…keep warm, plenty of fluids, raise the head of his bassinet, and I would even stand in a steamy bathroom to help break it all up.

After about 4 days, it seemed he was turning the corner for the better. However, the next day he went downhill…fast! After being at work all day with my fiance and I, his coughing fits were last for longer periods, causing him to go red in the face, and he broke out in a rash that we thought was chicken pox (the rash turned out to be nothing, just skin irritation) So after picking up our older 3 children from daycare, I kicked my partner and the kids out of the car, basically threw their bags after them, waved goodbye and said “Don’t worry, I will be home in a few hours”, and the bubby and I took off to the hospital.

Cameron, days after diagnosis. He had just had his first PICC line inserted

Cameron, days after diagnosis. He had just had his first PICC line inserted

On arrival, I told the nurse at the emergency room that I felt he had bronciolitis, as my two older boys had been hospitalized with it when they were roughly the same age. Without really looking at him, they said they thought it was the same thing. So after doing the usual checks, they hinted that he would probably need to be admitted into our local regional hospital. I was expecting this news anyway.

As our hospital doesn’t have a resident doctor on site, the local GP’s (General Practitioner) take turns being on call. So the nurses called our family doctor (who is absolutely FABULOUS, he managed my pregnancies and delivered all my children…if he made it there in time that is!) He informed them that he was coming up…straight away. I probably should have guessed then from the nurses confusion that it was serious. He wasn’t on call that night, but I put it down to that he was a committed doctor (which he is of course!)

He walked in, did a very basic check of our son, which was very quick, and then closed all the curtains to the cubical and sat on the stretcher beside me. It was then that he told me that he had received a phone call from Princess Margaret Hospital for Children, in Perth. He told me that results from my son’s Guthrie heel prick test (a genetic test that all Australian babies have in the first few days after birth) had come back positive for cystic fibrosis. He started listing what it would entail.

At first, I thought he had said that my son had tested positive of showing signs of having CF, and that it would require further testing. I was panicking internally at this point, but trying to appear calm on the outside. But as the doctor continued to rattle off the details of CF, I had to stop and ask “So, he actually HAS it?”….one sentence brought my world crashing down..

“Yes, he has tested positive for having cystic fibrosis.”

My mind and body went numb. Everything the doctor said after that sounded garbled, like he was talking underwater. To this day, I still have no idea what he said after that point.

I then was given a few minutes alone to try to calm myself so I could make a phone call to my patiently waiting fiance back home. When I called, I struggled to hold the tears back. As my voice cracked, I said “Its a little more serious than a cold, he has cystic fibrosis.” Like most people, he got it confused with cerebal palsy, and asked if he was going to be a vegetable, after reassuring him that wasn’t what was going to happen, he calmly told me that everything would be ok….we would get through this. It was what I needed to hear. After that, my emotions were in check.

Our GP called the respiratory doctor from PMH then, and was advised to do a chest xray, which showed that my son had pneumonia. After calling the respiratory doctor back, it was decided that my son should be airlifted to the hospital in Perth that night.

By this stage, my mum had arrived at the hospital, as my fiance had rung everyone in our family to tell them the big news. She stayed with my son while I was given half an hour to go home and grab some belongings to accompany my son on his flight.

By this stage, it was about 9pm, my older children were fast asleep, but it gave me a chance to fall into my fiance’s arms for a (too short) period. My mother in law drove me back to the hospital, so the I could leave the family car at home.

About midnight, we were taken by ambulance to the airport, loaded into a small Royal Flying Doctors airplane and took of on our unknown journey.

It was midnight by the time we made it to the children’s hospital, and another 2 hours before we made it on the ward due to a very nasty car accident taking precedence in the emergency room (and fair enough!) At 4 am, I sat on the floor of the shower of the hospital, miles from home and family, bawling my eyes out.

The next morning, the respiratory doctor came in, introduced himself, looked over my son, prescribed necessary antibiotics and took me aside and told me what the future would hold.

Cameron having his first nebuliser antibiotic treament

Cameron having his first nebuliser antibiotic treament

The next two and half weeks were days filled with specialist visits, physiotherapists, doctors, dietician, social workers, nurses….giving me all this reading material, teaching me about meds and techniques for physio at home. Oh, and don’t forget the pacing of halls as PICC lines were replaced as they kept dislodging, or blocking, within 24hours.

One of the hardest parts was leaving the family behind. My children went to bed not knowing where I was, and we didn’t come home for weeks. Due to their development delay, they didn’t understand what happening, that their new little brother was sick and Mummy couldn’t come home yet.

Since then, he hasn’t had any more hospitalizations, but there have been a few close calls. We have to make three-monthly visits to Perth (which is 4-5hrs away) and annual tests.

He is a happy, healthy little boy, who is still maintaining full lung function. He isn’t pancreatic sufficient, so he has to have about 25 tablets a day just to help him digest his food. But he knows that he can’t eat until he has had his medicine. Some days he is a pain and spits them back at us, but we just scoop them back up, and shove ’em back in again.

I don’t like to think about life expectancy. In fact, the doctor told me that they don’t even like to speculate any more, not with all the advancements being made in treatments.

CF is now just a way of life for our family. It doesn’t stop us from doing anything. I don’t wrap him up in cotton wool (little bugger would just unravel himself anyway, just to cause mischief!)

I don’t see it as a death sentence. But it weighs heavily on my mind some days, knowing that,  hopefully a LOOOOONG time in the future, my son is going to die from this one day. That is the biggest emotional rollercoaster for me

Cameron in 2013...almost 4yrs old!

Cameron in 2013…almost 4yrs old!

But for now….we will live each day as it comes.

So there you have, two little letters that have irreversably changed my entire family’s life.

Bella 🙂