{Little Hearts} Tayla Grace

TG was born on 17 March 2010 weighing 2.160kg’s.

She started battling with the absorption of feeds from her birth and when she was 5 days old her heart condition was diagnosed.
When I had my amnio they discovered that she had a chromosome translocation but all the other standard pregnancy tests were clear,
unfortunately the paed allocated to me was not informed of this chromosome disorder until I mentioned it to him when she was 3 days old,
whereafter he redid the chromosome testing and the chromosome translocation was still apparent.

She was not sucking properly and so they tube fed her through her nose.

When she was 9 days old she was discharged from ICU where we flew her to Jhb to a pediatric cardiologist where he confirmed the condition.
He said that she would have to be 5kgs before they would consider doing the surgery.

I must admit that bringing her home for the first time, I was terrified, especially knowing she had a heart condition. I think I did all the crying for
her because she was so tiny and did not cry much.

She battled with the absorption of her feeds from birth and when she just over a month old, on 23/04/2010, she was readmitted into hospital.
We were feeding her every hour, day and night at first and slowly worked up to feeding her every 3 hours but with every feed she was vomiting
most of the formula up. So many different formulas were tried but still, she battled to keep the majority of it down.

On 9 May 2010, I was allowed to bring her home but a few weeks later on 28 May 2010 she was readmitted into hospital and put on constant feed
where they fed her tiny amounts continuously through the tube in her nose 24/7.

I spent the next two months with her in hospital trying to get her weight up because the surgery could only take place once she got to 5kg’s but the
cardiologist and his team agreed after taking over 4 months to get her to put on a kg that they would consider doing the surgery when she got to 3.5kgs.

Tayla Grace reached the weight of 3.5kg’s on 14 July and on 21 July 2010 she was medivaced by airplane from the hospital in Pietermaritzburg to a
Jhb Hospital. She stayed in High Care for a few days and then her surgery took place on Monday, 26 July – she still weighted 3.5kg’s. It was so difficult
for me to leave her at the hospital after being with her nearly 24/7 for the past few months.

A few days after being admitted to High Care they did tests and discovered that she also had replux.

Her surgery took 6.5 hours and after they had stitched her up her body reacted negatively and so they had to open her up again and leave her chest
exposed for the next few days. They also discovered that she was born without a Thymus Gland so basically had no or very little immunity.

TG did every thing in her own time and still does. Her stomach was reacting negatively to the feeding after the surgery so she was really swollen.
Generally babies are swollen after the surgery but her stomach was especially affected. They inserted a feeding tube to bypass her stomach and go
straight into her intestines and hoped that his would help with her absorption of feed.
Due to her not having a Thymus Gland she unfortunately continually got infections and was on several lots of antibiotics.

A few weeks after being admitted into ICU they inserted a feeding tube into her stomach which she is still being fed through today.

A geneticist game to have a look at TG and noted a few abnormalities so her bloods have been sent to the USA to do a thorough examination and so
I am feeling really anxious about the results but I love my daughter no matter what the outcome of the results will be. South Africa don’t have the
equipment to do the testing which can be done in the USA.

Tayla Grace was transferred to High Care on Sunday, 5 September and then discharged on 8 September. I felt like I was taking a new born home
because she was still tiny and only weighted 3.7kgs.

It was not easy seeing her lying there with all the tubes but I kept reminding myself that they had to be there in order to save her life. I look at her
now sleeping next to me and feel so blessed to be her mother. She discovered sucking her thumb this weekend and smiles and often has conversations
with herself. Although her development is slow at the moment am so sure that as she get’s stronger so her development will improve.

She is a CHD baby and is 6 months old in these photos

Love
H & TG