Parents Names: Rhonda & Col
How many premmie babies do you have? Only the 1
How long were they hospitalised for? Rachel was in the NICU for 90 days, then transferred into the SCN at the level 3 hospital. On day 101 we were back transferred to a SCN at a level 2 hospital closer to home where we stayed for 20 days.
Is there any prematurity in your families history? Apparently I was 2 months early. It sounds like my mother had gestational diabeties. But the records of my mother’s health are patchy as it was overseas in a primative area many years ago. I was born the same size as FT and had no problems apart from reflux.
How did you cope with the world of prematurity when your child/children were born? It felt like a crash landing in a foreign country where I didn’t speak the language, have any currency or any clue on direction. But as parents you find a way to cope. I expressed a lot because that made me feel like I could do something (resulted in a huge over supply). We were lucky and grateful to have stayed at Ronald McDonald House where many “long termers” were who gave us advice and support and guidance. Soon we became the long termers and did the same for newbies.
How did you feel when you first saw your child/children after they were born? Isn’t that a surreal moment?! You know there are a dozen other people in the room, but they all seem to fade out as you look into that humidicrib and think, “What have I done?” of course the self blame game starts. It was my husband’s first child and I was almost angry when I heard him sprout phrases that all new dads say. “Isn’t she beautiful.” “Look what we did.” “We made her. I think she has your nose.” All I could see was my tiny baby resembling a skinned rat (too small to be a skinned rabbit). I know this all sounds harsh doesn’t it. I had fear. I had anger. I felt defeat. It was at least a week before I felt a bonding start to happen.
Did you find it hard deciding to have another baby or have you decided no more? Having a prem hasn’t deterred us from wanting another child. We figure that we’ve had a 24wkr, how much worse can it get? And her reasons for being born early was a combination of 2 unlikely events – a very short cord and a low lying placenta leading to placental abruption.
Have there been any lasting complications due to your child/children’s prematurity? if so how have you dealt with it? Rachel is still on nocturnal oxygen a year after getting home. Her PDA is still open and will be surgically closed when she grows a bit bigger. She also has a pulmonary stenosis and a heart murmur. But it seems that nothing is going to slow her down. As for dealing with it… well her bedtime routine is bath, PJ’s, bottle, oxygen hose, cot. Her heart conditions seem to be contributing to her oxygen requirements and increasing her metabolism. So my almost toddler is still wearing 00 and getting herself into tiny places and trying to slide between the bars on the baby gates. The hardest thing to deal with is the threat of RSV and the isolation that can cause. Then watching her come down with a cold and very quickly crash.
How do you feel now about prematurity and how do you help others be aware of how serious it is for babies? Before Rachel’s birth I had no idea this world existed. When Rachel was born and people would try and offer support I would tell them they didn’t have a clue. How could they possibly compare their 34wkr to my 24wkr. How could they call their healthy 36wkr a prem? After spending 90 days in NICU and seeing many other complications and parents and babies I felt bad about my earlier “snobbery” as I realised that no matter what the stage, if a child is born sick or early those parents were feeling the same fear and shock that I went through. We have been very public about our story and Rachel’s progression. We still are very public with her because we are very proud of her and how far she has come. I am starting to get local referrals from friends and aquaintences on families experiencing pregnancy problems or have had a prem. For the pregnant mums I do my best to reassure them and if they are experiencing “niggles” that just don’t “seem right” I encourage them to see a doctor to have their concerns addressed. For new prem mums in the area, my door is always open and the phone is always there if they need a parental translator or someone to talk to that has been there and done that. I also go back to the person that has set up the meeting (because they are usually a friend) and have a chat on how best to help. We live in a rural community and information isn’t always available out here. But with Rachel’s articles in the local paper a few times, and Women’s Day I have been able to reach a few families. I have also been talking to some regional presidents of the CWA (thanks to my mum) and re-invigorated the helpfulness of the CWA in crisis supplies (clothes & toiletry packs and food vouchers) for regional families flown to Brisbane. Some of these CWA groups are also making christening and burial outfits for the tiny bubs of families that get that awful news, “We’ll try our best, but you had better get your family here now…”
As for raising awareness of the seriousness? Just encouraging mums with niggles to get their concerns evaluated isn’t enough, but I’m not sure what more I can do apart from tell Rachel’s story.
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