I belong to an international premature baby/ child site Preemie-l and recently discussions have centred around the impacts of extreme prematurity.
I thought I would share a little of our journey. Our twin boys Mitchell & Harrison were conceived after 8 years on IVF. It was a difficult pregnancy with many alarms, but we made it to 24 weeks and were feeling very excited about the prospect of being parents after so many years of trying to conceive. My husband was transferred interstate (back to my family) and I drove the 1600kms with my friend to our new home. It was a blissful time - I could feel the babies moving and apart from the morning sickness which never abated I felt happy and well. I did however notice that whenever I went for a walk my belly would tighten - but I reassured myself that these were just Braxton Hicks contractions. On August 12th 2004 I noticed a small pink loss of mucous when I went to the bathroom. I tried not to worry and I went about my normal day. BUT later that morning I noticed the same thing, so I contacted my Obgyn. I was at my mum's place, but didn't want to worry her, so I went into another room and quietly called the receptionist. She reassured me it was probably nothing, but organised for me to come in later in the evening. 6pm that night my hubby and I went in for what I believed would be a routine check-up. But we were told I was 4cm dilated and in labour and my babies would be born that night.
Somehow we managed to hold off their arrival for 4 days and suddenly we had two tiny babies fighting to survive. Mitch 660g and coping on CPAP and Harry 840g and struggling even with ventilation. Hours passed into days. Days into weeks. Weeks into months. Many days I would hang over the top of their humidicribs silently willing them to survive and tears fell. I appeared (to my family and the health professionals) to cope, but inside I was a mess. How had I done this to my precious babies? This must be my fault...musn't it? Had I pushed myself too hard to unpack our house? Should I have driven interstate? At this stage I listened to all the advice from friends, family and medical professionals - prem babies catch up by 2 years of age...it's remarkable what medical science can do these days...my friend had a child with the same problems and you would never know it today... As a parent I clung desperately to the hope that despite being born 15 weeks too early that somehow they would defy the statistics and would be "normal"...what ever that meant. I am sure that I heard what I wanted to hear, but at the same time I am certain that many people also told me what they thought I wanted to hear. So after 5 long months I brought home two tiny, fragile babies who struggled to feed and failed to meet the milestones I had read about in my myriad of pregnancy and baby books. Still I clung onto the hope that in two years they would be barely recognisable as having being born prematurely, and that finally I could relax.
And now we are 3 1/2 years along in our journey and each day brings new challenges. Mitch & Harry are happy, delightful little boys but they ARE exhausting. They rarely sit still and are very loud. Harry NEVER stops talking unless he is asleep, he has sensory issues, speech problems, gross and fine motor delays, chronic malabsorption issues through bowel surgeries and is yet to be toilet trained. Mitch is poorly coordinated, falls over at least 20 times a day, has verbal dyspraxia and as a result becomes easily frustrated and lashes out at his more verbose brother, he also has malabsorption problems, astigmatism and myopia (due for glasses soon) and is yet to be toilet trained. Both boys attend two therapy groups a week as well as other numerous appointments. However despite all of the obstacles in their way they LOVE life and constantly amaze Kev & I with their determination and courage. Harry has learnt to climb on all kinds of play equipment without help. And Mitch loves to take care of his various teddies and dolls - lovingly feeding them and putting them to bed.
FINALLY we have been approved for a small carer's payment fortnightly to try and offset some of the associated costs of their ongoing therapy and transportation. And only now has it finally hit me that this will NEVER end. That my beautiful boys will always have impacts from their premature arrival. Somehow I had imagined or convinced myself that with enough therapy, love and attention, that one day a doctor would say to me "your boys are 'cured'". BUT that will never be. Please don't misunderstand me...I love and adore my boys and I can't imagine my life without them. I just (sometimes) feel sad that Mitch & Harry face life with additional challenges, when sometimes life is hard enough as it is.
Thank you for letting me share my story,