Gabriella Scarlett Cato
Our Angel arrived....
7 July 2007 at 7:55 am our little angel was born.
After a difficult and frightening pregnancy and lots of bed rest our little darling decided to wake me up at 6:00 am and we knew the time had arrived! Luckily dad was used to the midnight trips to hospital and we made it in record time to Umhlanga hospital and Gabriella Scarlett Cato was born.
After a difficult and frightening pregnancy and lots of bed rest our little darling decided to wake me up at 6:00 am and we knew the time had arrived! Luckily dad was used to the midnight trips to hospital and we made it in record time to Umhlanga hospital and Gabriella Scarlett Cato was born.
And so our story begins....
Gabriella weighed in at 1.55 kg at 30 weeks and was handed to us for a few brief seconds before she got rushed to NICU where she got hooked up to every machine possible. Dr Dylan Wesley arrived to tell us the news on our angel, and was very honest and said that we just had to pray she made it through the first 48 hours. So we did and she was put on every prayer list around the country. I hadn’t seen her since birth, so at 5 the next morning I pulled myself up and started walking to NICU, nothing could prepare me for what I felt when I saw our little baby girl. She was covered in machines and I couldn’t believe that she was so tiny. Our long road ahead started with our precious little girl.
Gabriella did extremely well, she was only fed through a nasal gastric tube and we started with 2ml feeds every 3 hours and were not allowed to hold her until she was about 3 weeks old. We got used to the good and the bad in NICU, it was 2 steps forward and 3 steps back, and we lived for the 2 days a week that she got weighed, as the closer she got to 2 kg the sooner she would be home. You get used to listening to all the machines beeping and the monitors alarms going off so when you go home at night, you actually miss the sounds.
After 8 weeks of NICU we finally went home with our precious baby. It was a wonderful feeling and the best was seeing her lying in her cot that night. Unfortunately for Gabriella the problems started after 2 days. Every time we would start to feed her she would stop breathing. She then also did the same when sleeping and this just continued. It was a frightening time for us especially to see her go through this after overcoming all the obstacles from her early arrival. So back we were rushed to NICU isolation ward, and the tests began. She had blood transfusions etc, but it did not improve. Finally the doctors ran a different test and it was concluded that Gabriella had a case of severe reflux.
We were told that Gabriella would need a Nissen Fundoplication operation, which was major surgery especially as she was so small. Unfortunately we had no choice but to go through with the surgery. Because of the severe reflux, every time we fed Gabriella she would stop breathing and her face would go a deep blue colour. She went in for her first operation for what we thought would be her first and only, and back into ICU we were sent for recovery. This was another traumatic time, strangely something we would become used too over time, seeing Gabriella hooked up too ventilators and what seemed to be every machine available in ICU while she got through the critical hours after the operation. Thankfully, after an extended stay we were finally sent home again looking forward to normal family life . We were wrong.
The battle with feeding started. It just took longer and longer and the volumes just got less and less. The screaming day and night got worse and after 3 weeks of weight loss and a frantic mother we FINALLY got people to start listening. That is when we were told due to the original operation not being totally successful, Gabriella would need a feeding tube(Peg). So back to theatre we went and life with a feeding tube began....You don’t have time to get used to anything. As soon as she came out of theatre we had to start feeding Gabriella and you have to forget about all the issues and insecurities and just feed your child! One thing that I have learnt from this is, I take multitasking to a whole new level. You learn all the tricks of the trade as you go along.
Gabs has had many many more operations, one in particular that has now left her with a large scar across her tummie, and spent most of the first year and a half of her life in hospital. She has had tubes inserted into her small bowel and nothing has worked. She continued vomiting from after her first major surgery and no matter what we tried or did she would gag and vomit. We did pump feeds, where she has to be fed continuously 1ml per minute for one hour on and one hour off daily but that didn’t work. So we got used to our life with tubes, towels for vomiting every half hour and hospitals. Nobody had any answers and we have been around the country. I never returned to work as she had to be watched all day for fear of aspirating and it was too costly to employ someone to take care of her. So mom and daughter have been joined at the hip for 2 ½ years. We finally got to a dietician that helped us and she changed Gabs formula and things have been better, She has stopped vomiting and her weight is finally normal for her age.
This has become a way of life for us and it is strange for people to see us feeding her like this, but we have got used to all the staring and the questions and also the plain ignorance of people. We have gained wonderful friends in our lives and also lost people we thought were friends, as it is hard for people to accept our way of life now. Our family has been our one constant support in our lives and without them we would not be able to have continued this battle. They have been there through the dark times and also in the times that have been special to us, like when Gabs rolled on the grass for the first time and allowed us to put shoes on her very sensitive feet! She is our miracle child and people might think that she isn’t normal and stare, but she is our precious gift and as many tears as we have shed, we have had double the amount of smiles and laughter with her in our lives and cannot imagine our lives without her.
This has become a way of life for us and it is strange for people to see us feeding her like this, but we have got used to all the staring and the questions and also the plain ignorance of people. We have gained wonderful friends in our lives and also lost people we thought were friends, as it is hard for people to accept our way of life now. Our family has been our one constant support in our lives and without them we would not be able to have continued this battle. They have been there through the dark times and also in the times that have been special to us, like when Gabs rolled on the grass for the first time and allowed us to put shoes on her very sensitive feet! She is our miracle child and people might think that she isn’t normal and stare, but she is our precious gift and as many tears as we have shed, we have had double the amount of smiles and laughter with her in our lives and cannot imagine our lives without her.
Our little darling now goes to school in the mornings and is fitting in nicely and has overcome all of her tactile issues she had. She enjoys the beach, but it does hurt her swimming in the water as she has a open wound where her tube is and the salt water burns. She has lots of friends at school and is progressing nicely. Finally she is fitting into the world even though she still has to be fed every 2 or so hours through her tube.
Gabs drinks small amounts of water with a bottle, but understandably has a fear of swallowing other liquids and foods due the severe burns she had from reflux. She tries to eat chicken, but not much gets swallowed. She looks like a chipmunk when eating , as all the food is stored in her mouth. She does try and eat Bar Ones, and likes ultramel custard. As she stopped drinking at about 3 months, she has never known anything but tube feeds.
Gabs drinks small amounts of water with a bottle, but understandably has a fear of swallowing other liquids and foods due the severe burns she had from reflux. She tries to eat chicken, but not much gets swallowed. She looks like a chipmunk when eating , as all the food is stored in her mouth. She does try and eat Bar Ones, and likes ultramel custard. As she stopped drinking at about 3 months, she has never known anything but tube feeds.
Our Aim
Our darling has progressed so wonderfully, and has survived so much in her life. We would like to get her to live a normal life without a tube in her tummy. There is however nobody in South Africa that can help us anymore. We have managed to find a wonderful clinic in Graz, Austria www.notube.at. They have a team of professional that take children in and teach them how to eat and guide the families how to deal with the issues.
The hospital has a very intensive program over 4 weeks that help the children to eat. This is very costly for us, as we have to pay airfares, accommodation, meals, and the hospital fees. The approximate cost for the 4 week trip is a little over R200 000!
We have found a dietitian that is prepared to try in the mean time to get Gabs to eat, she is working closely with our paediatrician( DrJ.F Roos) .This wonderful man has been our saving grace and we would not have been where we are today with Gabs if he did not come into our lives and help and support us.
We are hoping to gather funds to pay for Gabriella’s continued therapy, specialised milk formula, tubes and many other extras that she needs, but our main priority is the trip to Graz and for her to have plastic surgery later in life as she has bad scars across her tummy.
We have set up a trust account for Gabriella and we would appreciate all the help we can get to collect money for her and her continued expenses! Any suggestions are welcome. We are trying everything we can to get our angel to eat and live normally but we need more help as we can’t do this by ourselves. So please send this email to everyone you know and maybe we can get Gabs eating again!!!!!
The hospital has a very intensive program over 4 weeks that help the children to eat. This is very costly for us, as we have to pay airfares, accommodation, meals, and the hospital fees. The approximate cost for the 4 week trip is a little over R200 000!
We have found a dietitian that is prepared to try in the mean time to get Gabs to eat, she is working closely with our paediatrician( DrJ.F Roos) .This wonderful man has been our saving grace and we would not have been where we are today with Gabs if he did not come into our lives and help and support us.
We are hoping to gather funds to pay for Gabriella’s continued therapy, specialised milk formula, tubes and many other extras that she needs, but our main priority is the trip to Graz and for her to have plastic surgery later in life as she has bad scars across her tummy.
We have set up a trust account for Gabriella and we would appreciate all the help we can get to collect money for her and her continued expenses! Any suggestions are welcome. We are trying everything we can to get our angel to eat and live normally but we need more help as we can’t do this by ourselves. So please send this email to everyone you know and maybe we can get Gabs eating again!!!!!
Our Darling can eat!!!!!!!
Well, yes this is good news!We managed to start a tube weaning program with the help of our darling doccie(Dr Roos) and Claire(dietician) here in South Africa at our home as the medical aid would not admit Gabs into hospital as this has never been done in South Africa and worked!So we started the process round about the 20 May 2010 and it was very hectic!
We started reducing the tube feeds slowly over 6 days until she was having no foods through the tube at all in the day and only one in the evening before she went to bed. And I can't explain to anyone how hard it is to have to watch your child starving and hoping that her natural instinct will kick in and she will start to realise what the pain in her tummy is and try to eat!Very hard as a mom to watch and for the first 2 weeks I had to sit on my hands and not look at the clock to see for how long she has gone without a feed.This was all I have known for the last 3 years is to feed every 2 hours and then start the process again, so I felt lost!
Thank Heavens for my support system , my darling mother who has been there every step of the way with us and she was right here by my side all day and night for the first 2 weeks and she kept me sane and managed to get me through the hardest times ever and came down from Joburg to be here for us!We cooked, and cooked and cooked!We had picnics all day long and every possible type of food we tried.Gabs had to start this herself without anyone suggesting to her to try, and she did!She started with some cerelac porridge. Poor angel had no hand and mouth co-ords,and there was very little muscles that worked in her mouth so for the first few times the porridge would just pour out of her mouth, but she tried so hard!
And so the journey continued and slowly but surely she started eating more porridge and then custard and then some spaghetti.She dropped 1.5kg but slowly she started to gain it 100g here and there and finally our darling doccie decided that we can take the big step and remove her feeding tube on the 15 July 2010 a week after her 3rd birthday!
I think I was more scared than what she was, as I knew in the back of my head as long as the tube was there we still had our safety net to fall back on if she for some reason stopped eating. But we scheduled it and Gabs chose a special box to put her tube in and was very excited for the day!Nanna and Grandpa flew down and they came with and she lay dead still as it was removed!!!Yeah 2 days before her party!We felt so strange that night all sitting around not knowing what to do with ourselves, we had waited so long for that day to come and never thought it would happen!But it was a huge step in our lives!And so our long battle was almost over!
She has progressed wonderfully in the last 3 months.She eats cerelac for breakfast,a butter sandwich for school and 2 minute chicken noodles,custard and also like chicken macaroni from woolies.Everyday she does try and taste something else, she loves mash and eats crisps and bar-ones,we are hoping that she will get better with the variety but at this stage atleast she eats!
Her confidence has improved so much and she loves running around and jumping and even lies flat in the bath on her tummy now!
Thank you so much to everyone that has helped us in support, donations and just praying for our darling little girl!We will update her blog so you can all see what she is up to and post more pics for you all.She is a miracle to us all and we are just so happy that she can start living a normal life!
Gabriella's trust is still open and all funds that we have raised for her and any future donations will be used for medical expenses and for schooling for her.
Once again from the bottom of our hearts, Thank you to all!
We started reducing the tube feeds slowly over 6 days until she was having no foods through the tube at all in the day and only one in the evening before she went to bed. And I can't explain to anyone how hard it is to have to watch your child starving and hoping that her natural instinct will kick in and she will start to realise what the pain in her tummy is and try to eat!Very hard as a mom to watch and for the first 2 weeks I had to sit on my hands and not look at the clock to see for how long she has gone without a feed.This was all I have known for the last 3 years is to feed every 2 hours and then start the process again, so I felt lost!
Thank Heavens for my support system , my darling mother who has been there every step of the way with us and she was right here by my side all day and night for the first 2 weeks and she kept me sane and managed to get me through the hardest times ever and came down from Joburg to be here for us!We cooked, and cooked and cooked!We had picnics all day long and every possible type of food we tried.Gabs had to start this herself without anyone suggesting to her to try, and she did!She started with some cerelac porridge. Poor angel had no hand and mouth co-ords,and there was very little muscles that worked in her mouth so for the first few times the porridge would just pour out of her mouth, but she tried so hard!
And so the journey continued and slowly but surely she started eating more porridge and then custard and then some spaghetti.She dropped 1.5kg but slowly she started to gain it 100g here and there and finally our darling doccie decided that we can take the big step and remove her feeding tube on the 15 July 2010 a week after her 3rd birthday!
I think I was more scared than what she was, as I knew in the back of my head as long as the tube was there we still had our safety net to fall back on if she for some reason stopped eating. But we scheduled it and Gabs chose a special box to put her tube in and was very excited for the day!Nanna and Grandpa flew down and they came with and she lay dead still as it was removed!!!Yeah 2 days before her party!We felt so strange that night all sitting around not knowing what to do with ourselves, we had waited so long for that day to come and never thought it would happen!But it was a huge step in our lives!And so our long battle was almost over!
She has progressed wonderfully in the last 3 months.She eats cerelac for breakfast,a butter sandwich for school and 2 minute chicken noodles,custard and also like chicken macaroni from woolies.Everyday she does try and taste something else, she loves mash and eats crisps and bar-ones,we are hoping that she will get better with the variety but at this stage atleast she eats!
Her confidence has improved so much and she loves running around and jumping and even lies flat in the bath on her tummy now!
Thank you so much to everyone that has helped us in support, donations and just praying for our darling little girl!We will update her blog so you can all see what she is up to and post more pics for you all.She is a miracle to us all and we are just so happy that she can start living a normal life!
Gabriella's trust is still open and all funds that we have raised for her and any future donations will be used for medical expenses and for schooling for her.
Once again from the bottom of our hearts, Thank you to all!
