A light at the end of the tunnel

Well. I never thought that I would be holding a baby that is over 4kg. She has outgrown all her teeny tiny clothes and is teetering dangerously on the edge of popping out of her 0000 before she’s even worn them all. Little Lily is not little anymore, she is a big chubby bubby. She is now three weeks corrected or 43 weeks…18 weeks in the hospital, nearly 5 months, 126 days…

I also never thought that I would be starting to get excited about her coming home! In the last week doctors and nurses have started to mention that word…home. Lily is very stable (usually) with her oxygen now, and will be able to come home with a small amount for as long as she needs. (This could be anything from 3-6 months or longer) We have been given a timeline of 2-4 weeks, so are crossing everything that Lily the brave can pull this off before Christmas.  

We need to establish feeding and figure out how to deal with her terrible reflux. It’s the only thing left holding her back. She is still tube fed, but has such chronic reflux that she holds her breath to push it back up or vomit and then de-saturates her oxygen levels. Her food is already thickened, given to her very slowly and she also two doses of a tummy settling medicine per day. We will recommence some attempts suck feeds this week to see if she is interested, but I don’t blame her for not being very keen, considering that every three hours her tube feed is such a painful ordeal. Her 22q deletion poses extra feeding problems too, making swallowing difficult, so it is very likely she will come home with a nasal tube, or we may have a stomach peg inserted. That way we can focus on feeding in the home environment where we can all be a little more relaxed. These tiny hills for Mr T and I are nothing compared to the mountains Lily has already climbed! 

Mr T and I have been putting our mummy and daddy hats on this week and found a few things that help her through. Lots of pats on the back and an upright cuddle seem to do the trick.

I have learnt over the last 18 weeks that everybody’s journey is relative in Nicu/special care. Mr T and I look at the parents of babies born only a few weeks early with very small difficulties, and think…if you only knew. It equally applies to us too though….we are by no means the longest stayers, and if only we knew… there is always someone out there who has had a tougher time than you.

Over the last week; the entire 18weeks of emotion erupted one Thursday before school, so Mr T came to the hospital with me that day, to hold my hand and prop me up. Not only is it tiring being in the NICU with your own baby, but you are also constantly surrounded by the fear and worry of other parents and babies. Every time the emergency alarm rings out loud in the NICU you are grateful it’s not your baby this time, but so sad for another family that has to endure a terrifying life or death situation for their own little bubs. It is so very sad.

Mr T and I are finally feeling like a real Mum and Dad with the little smiles she gives us when we greet her, the way she snuggles in tight on your shoulder and falls asleep after a feed and the way she is comforted by our voices, attention, cuddles and love. We can’t wait to have her with us all the time, where we can give her our undivided love and attention all the time, whenever he wants. I can’t wait for her to wake me in the middle of the night (10 times), change all her lovely nappies, sit on our couch with Lily on my lap and go for walks in the summer around the park with Mr T and Sammy…I can’t wait. And all going well, it’s not too far away Lily girl; Mr T’s Nan would tell you Lily that the secret is to ‘just keep going’…(its worked well for her, she’s in her 90s with the softest skin you’ll ever snuggle).

I can nearly see, touch , smell taste a light at the end of a very long tunnel. By no means anywhere near over, but at least the end of this very stressful bit.