Leaving our 4 day old daughter alone in hospital and coming home to an empty nursery felt like a bad dream. My sister and brother-in-law tried their best to be positive for Dinesh and me. But the only person who could make me smile was my nephew Thishane.
I was finally able to speak with my mum and dad via skype. They were like everyone else who knew were worried about Diyanna. I explained the little information we had about Diyanna’s condition. As with everything in her life, mum asked me to offer Diyanna to God and to follow the path he has chosen for us.
Dinesh and I were exhausted mentally, emotialy and physicaly. The pain of the caesarean section was also flaring up, the constant walking up and down the ward to the Neo Nates had not helped the healing process. After an early dinner I tried my best to relax and to get some rest. But I couldn’t. I needed to see Diyanna. Being the amazing husband that he is, Dinesh took me to the hospital to see her. We watched her sleeping in her incubator. I wanted to touch her, to hold her in my arms but the nurses on duty told me that I shouldn’t, as it would disturb her. We stayed there for an hour watching her. By the time we came back home it was 10.00 pm. Dinesh had decided that he will go to work and take is parental leave when Diyanna comes home.
The next morning I made up my mind that I would not let me emotions get the better of me. I needed to be strong for Diyanna and for Dinesh. We have to work together to get through this. I had to fight to get the right and best outcome for Diyanna. There were two things to focus on. One to work with the doctors to find out what was going on with Diyanna and to get her the best treatment, and two to bring her home as soon as we can.
We got to the hospital by 6.00 am on Monday. I expressed whatever milk I had to give her through the NG tube. By 7.30 Dinesh left for work even though it was hard for him to leave his girls. I sat next to her incubator and just watched her. The overnight nurses were still on so I couldn’t hold Diyanna.
By 8.30 the new nurses had taken over the ward and I was able to hold her. While holding her all I could sing was a Sinhalese hymn “Baraganna Samiduni”. Singing this hymn calmed my soul and made me feel that somehow things will work out regardless of what the future would be.
The nurse asked me if I wanted to breastfeed or bottle feed, to which I said that I want to breast feed but that Diyanna was good with the bottle as we had already fed her with it upstairs. But I was told that as a policy, they do not use both forms of feeding as it might confuse the babies. In other words, until Diyanna could breastfeed properly she would be given the NG tube feeds.
By 11.00am a team of peadiatic doctors came in to see Diyanna. The main concerns for them was that she was extremely floppy and was lacking the reflexes of a newborn. The fact that she was unable to feed and maintain her body temperature was also problematic. A list of blood tests was ordered. To carry out the tests they needed collect alot of blood.
Given Diyanna had lost some of her birth weight, they would have to do this in stages. It was hard for them to find a vein to draw blood form. When they finally found one, they could’t draw out any blood. A senior doctor had to come in and repeat the process. At one point they had to squeeze blood out of her. Through-out this ordeal her cries were soft.
While the other infants around her cried and made lots of noise, Diyanna was quiet only making a small sound when she was up and hardly ever cried. It seemed as if she was like Dinesh who had also been a very calm baby. We later would unserstand that it was due to her genetic condition.
I tried to breastfeed her at noon. I was told by the nurses to change her nappy so that she would wake up. During the nappy change she did a stretch of her legs and folder her arms tight on to her chest. She was also very stiff. When I told the nurse she said not to worry about it. For 10 minutes I struggled to feed her. She wasn’t latching on properly. The nurses watching and telling me that I am running out of time, the prssure to try and feed her was immence that gave up trying to feed her. After 15 minutes the nurse took Diyanna put her back into the incubator and gave the feed through the NG tube. I felt defeated and useless. No matter how hard I tried, I couldn’t do this simple thing with Diyanna.
Dinesh came to Diyanna during his lunch break and was there when a team of neurologists came to see her. After examining her they asked questions on how she had behaved while in the womb and since birth. I told them everything I could and also about the stretching episodes that happen during a nappy change. They also asked questions of our family history and traits. At the end they requested to do an MRI of her brain and also for blood for genetic and other testing.
In the afternoon I tried to feed her again with no success. The 15 minuet window I had to try and feed her was impossible. Looking back on it now I realise that the emotional roller-coaster I was on, lack of sleep, loss of appetite and the feeling that I had all ready failed her and her condition made it hard for the connection to happen.
The nurse then suggested that I should see a speech pathologist and a lactation consultant to help with the breast-feeding. An appointment was made to see both of them the next day.
By 5.00pm Dinesh had come back to the hospital. It was his first day back at work since Diyanna had been taken to the NICU. Diyanna is his world and I can honestly say that he loved her even before she was conceived. All he wanted to do when he came ro the NICU was to hold her and spend some time with her. I gaver her to him and went outside the ward to get us some coffee, but when I came back Diyanna was back in her incubator. The new nurse felt that it was time for Diyanna to have a rest. I could see that Dinesh was hurt. We later realised that more often than not fathers were not treated or given respect in the same manner as mothers. Many times Dinesh’s request and concerns were dismissed by most of the nurses. We stayed with her till 8.00pm and headed back home.
We would be back in by her side at 6.00 am again.