The first few days after Baby was born, while we waited for confirmation that she did have the Down syndrome. Where a blur of tears and a roller coaster of emotions.
Because she was rushed to neonatal shortly after birth I spent my days in the hospital by Baby’s side listening to the beeps of the machines an willing her to fight and get better. I would sing to her an tell her she had to fight as she had all her brothers an sisters waiting to meet her an shower her in love an kisses.
If I wasn’t by her side I would be hidden in my room expressing what the midwife called “liquid gold”. So that once Ivy could have milk mine would be waiting for her. Luckily I had a really good supply, so much so that after a week of expressing they asked me to start home freezing because there freezer was full of my milk.
On day 2 I had to go home an leave her at hospital. It was one of the hardest things I have ever had to do. I remember the empty numb feeling I felt when I walked into my house to be greeted by all her things I had laid out before I went into hospital. Her crib an Moses basket just waiting for me to place my bundle inside. This was meant to be a happy time but instead I found myself crumpled an crying on my kitchen floor. That night I had my husband move all her stuff an cover it with a large sheet, so it was still waiting for her but it wasn’t a constant reminder.
Baby didn’t make much improvement until day 3. When her blood pressure started to regulate an slowly but surely they started removing wires. By day 5 we had our confirmation that yes Baby had trisomy 21 which meant she had a extra 21 chromosome. Where as we have 46 or 23 pairs she had 47 so she had 22 pairs and 1 triple set.
All I could think was how was I going to explain it to my kids, would people accept her and would they blame me?
Deep down I knew I loved her with all my heart and her having Down syndrome didn’t matter as long as she got better.
But my fear clouded it all my emotions because I still had to come to terms with everything.
I found myself worrying if she would sit up, crawl, walk or talk?
And all I wanted answers to expel my fears and for someone to tell me it was all going to be ok.
My husband was great an never seemed to bat an eye lid. He loved Baby without question and accepted everything really well. He was my rock and helped me to just focused on the good. He also spent most of time looking after kids and didn’t even complain that he hadn’t so much as had his first cuddle with her until she was over a week old.
On day 5 Baby came off the ventilator and was breathing for herself. Which meant we were finally able to hold her again. She still needed support with oxygen but she was starting to make major improvements. After another week of minimal support she slowly started spending more time in just normal air and didn’t need as much support. Finally when she was 16 days old she was moved out of neonatal and was put on the ward where I could be with her full time to help get her feeding before she could come home.
I don’t think I have ever been so excited to be having sleepless nights an dirty nappy duty.
I had been expressing like a machine to keep my milk supply up because I wanted to breastfeed. I had read that children with Down syndrome can breastfeed, but there could be issues due to her low muscle tone, such as weak suck and sleepiness but I wanted to try. In neonatal she was fed with a Nasogastric tube or an NG tube which went up her nose an down into her stomach. I tried for the first few days I was with her full time but the hospital weren’t happy as she didn’t wake for feeds during night and was having problems latching.
After 4 days of trying to breastfeed all the stress an pressure I felt I was under ended up affecting my supply an it drop considerably even though I continued to express. So I decided I would try expressing an bottle feeding just until I got her home an then we would try in the comfort of our home.
She took to the bottle really well. She still didn’t wake for feeds but she would sleep feed and it was another step closer to getting her home.
After getting her feeding from bottles everything just seemed to slot into place. She had her NG tube removed at 22 days old an she was allowed home the next day.
I was so overjoyed to have my baby home. To finally have my whole family back together again 🙂
The first few days home where full of feeding, expressing, nappies and sleeping when we could. Slowly but surely we all got in to a routine and life became easier and her Down syndrome became easier to accept. Once I got to spend time with her to see how amazing she is and what she was capable of I knew her fighting spirit was still going strong and when ever I have a down moment or things start to look bleak she amazes me again.
She did it on her first week home when she started to latch properly and I started having some success with breastfeeding. By 5 weeks old she was exclusively breastfeeding and gaining weight well.
I have a feeling my little girl is not finished with her surprises yet and going to be one that never gives up just like me.