After a stressful few weeks of not knowing what was going to happen, I was in labour. 1 hour and 23 mins later, we welcomed our baby girl, Ariana, to the world. Straight after her delivery, she was incubated and ventilated and taken to Westmead NICU. This is where I first met my baby at 3 hours old. She was surrounded by tubes and machines keeping her alive.
Ariana was extremely unstable and the first attempt to move her from Westmead NICU to Westmead Children’s Hospitals Grace Ward failed. At 9 hours old, they were able to stabilise her with the help of IPPR, Oxygen and muscle relaxants, they were able to transfer her.
The second time I saw my daughter she was 24 hours old. Grace Ward and its staff would become our home and family for the next few weeks.
The first 48 hours of Ariana’s life was critical, it was touch and go for a while as she not only had her liver, left kidney and intestines in her chest cavity, but also pulmonary hypertension from the pressure of her heart being pushed over to the right side & repertory distress from her left lung not forming from the other organs in its place and her right lung being pushed on all due to her Congenital Diaphragmatic Hernia.
At 8 days old, I was able to ‘hold’ my baby. Still surrounded my tubes and with the help of 2 nurses and a pillow between us, it was the first time I felt like a mum since I gave birth.
On the 9th day, with Laine and my parents and my brothers by our side, we prepared ourselves for Ariana’s lifesaving surgery. Unsure if it was the last time we would get to see our baby, I asked her surgeon, Dr Albert Shun, to save her and let me take my baby home.
Hours past, and we feared the worst. When the nurse called us back to the ward, we rushed there only to find an empty spot where Ariana’s incubator should have been. My heart dropped and my worst fears felt like they were coming true.
Dr Shun, arrived, still with no Ariana. Putting us quickly out of our misery, he told us that the surgery went well and we have a very strong little girl who held on through every minute of her surgery. She was in recovery and will be out shortly. Only then did I realise that I was holding my breath this whole time. I think I startled him when I hugged him with the biggest thanks.
However she was not out of the woods yet. This was only one hurdle to overcome. After having her organs put back into place, it was a waiting game to see that they will work properly, It was baby steps to get her off oxygen, then once ready it we would fight the battle of getting her to feed.
At 4 weeks old, Ariana was completely off oxygen and was starting to feed. Impressing all the staff at Grace Ward, she was home at 5 ½ weeks old, but still on morphine. At 7 weeks she was weaned off morphine completely. With appointments every few weeks to the surgeons, lung specialist, and paediatrician, Ariana was thriving as much as she could for a CDH baby.
Hospitalised 3 times between the ages of 9 months and 2 years with broncholitis due to her lung capacity, she needed to be monitored and receive oxygen. It wasn’t until 2 ½ years that we had our next major scare.
Ariana developed a bowel blockage caused by the scar tissue from her repair. Transferred from Nepean Hospital to Westmead Children’s Hospital, we were back under the ‘old’ team that saved her life at birth. With talk of more surgery to unblock the bowel, we were lucky that it repaired itself. After returning home, we were back at the Children’s Hospital 3 days later as her bowel became blocked once more. Again, after a week of monitoring, there was talk of surgery nut again it had repaired itself.
2 years later at 4 1/2 Ariana was hospitalised again with a pinched bowel. Lucky enough it was just a over night stay as her body repaired itself.
Always looking for the signs of complications that can occur, we make sure she has as normal life as she can and count our blessings everyday as we were one of the lucky ones who got to bring our baby home after her battle with CDH, this is something not many get to do.
