Ailbe: a week in NICU

During those first few days of Ailbe being born, I was stuck in a hospital away from my husband and other children. I was recovering from major surgery and dealing with the biggest emotional trauma I would ever face. Ailbe was in NICU (Neonatal Intensive Care Unit) being tube fed, needing oxygen and I was like a YoYo between the ward and NICU. The two wards were on different floors with quite a long walk down corridors. Initially, I had to rely on Kyle, or busy ward staff to take me there and back in a wheelchair. I would spend as much time as I was allowed with Ailbe, desperately trying to get him to breast feed. Constantly feeling like a failure when the midwives would come and hover over us with a bottle saying he needed to have his milk (they had a strict timetable) If NICU staff organised the transport system there wouldn’t be any delays!

The staff were amazing and incredibly supportive during this time. Everyone kept expecting me to breakdown. How could I breakdown. I had 2 children at home and a poorly baby that needed me. What good am I as a mother if I can’t hold it together. Behind the closed doors when no one was looking I did have my mini break downs.

I knew there was another baby like Ailbe who was on the same NICU unit, not only did they share a diagnosis but their birthday too. Now thats extra special. I figured it out pretty quickly which baby was the “other one” the staff talked so excitedly about. I remember seeing the family standing/sitting around the cot in NICU. I didnt realise it then how we would become friends and be able to sit around and laugh and be happy. Celebrating the highs and supporting the lows of life with our new “special” babies.

So as I would walk back to the post-natal ward I would see all the mothers with their babies all excited. I even saw another parent from my son’s school who had given birth to a boy. I just hid in my side room. Unwilling to engage in conversations and have those awkward questions. Everywhere I looked on the ward were pictures of typical babies.

One time a cot with a precious new-born baby was wheeled down the corridor with an exhausted looking mother the dad walking alongside, his role to carry the bags. Attached to the cot was the largest foil balloon celebrating the arrival of the new baby boy. The midwife caught my line of sight and looked at me with this sad and apologetic look. In those early days I found it really hard to see other babies. It took me a long time before I could look at other babies and not cry and feel envious that they got the “baby” they expected.

One morning sat in my room waiting, I had a visit from a midwife. She caught me crying and sat down, her advice helped me move forward a little bit. This lady told me it was OK to be feeling what I was feeling. I was grieving for the child I didn’t have and the uncertainty of our future. She spoke about a poem called “Welcome to Holland”. I had never heard of this and of course I wasn’t in the right frame of mind to absorb it then. Most of the time I would just sit and look at Ailbe feeling sad that he was different not knowing what the future held for him. I was in mourning. Lots of people would say to me that he will bring us so much joy but I couldnt see that then. All I could see was my child would be disabled. We didnt need a book with faces of children with DS which is what we were shown. We needed information of what life will be like raising a child with DS. We needed to hear the happy stories, the love, the fun, the community spirit, and that its normal to have negative thoughts. All of this I now know exsists within the Down Syndrome Community.

During that week Ailbe and I stayed in hospital, I was shown so much love, compassion, and kindness from staff it was overwhelming. I cant be sure but I believe that most of the team that delivered Ailbe popped onto the ward for a chat to see how we were both doing. I even had a visit from the maternity midwife who looked after me on the maternity assement unit before Ailbe was born. I didnt know this before Albie stayed on NICU but the Consultants are down there all the time, day and night. One time I walked onto the unit I saw this guy doing a scan of Ailbe. I had never met him before, he was a Consultant who was scanning his heart. They had found a little hole in his heart. The staff were all so humble in their approach and dealings with us it was lovely.

During that week I was visited by friends and family. Despite hiding away from the world I had some friends who would come and visit us. I found these visits important. Being able to see other people love my baby as much as we did and be normal around us was essential. During one vist I was a little shocked as I had an unexpected guest. My dearest friend had travelled over 2 hours for a 1 hour visit then having a 2+ hour drive home. This was very touching. As with all good friends we didn’t need words just a hug and shared tears.