A blog by Mr T

Mr T has written a blog post for me this week. Mr T is a dashingly handsome man and throughout our travels with Lily has grown even closer to my heart. While he has called it ‘manning up’, Mr T has always has this under wraps already….he listens, cares, and just knows what to do when confronted by his teary wife…on the phone….before school….at the hospital. Manning up is the ultimate version of love and support, it’s just what Mr T does, he rocks at it.

MAN UP!!!

So when Robyn asked me to write a blog post for her I thought to myself where do I begin. She is a beautiful writer and is so eloquently describing our journey as a new family. For my post I thought I would tackle the topic of "manning up" because that is what this our circumstances has required me to do.

The last 20 weeks have been a blur. We have gone from being pregnant at 20 weeks, to bed rest for four weeks, to the hospital for one week, in labour for one day and now parents for 20 weeks. Do I feel like a parent yet? Do I feel like a dad? It's a relief to finally say yes I am on my way. We spend years thinking about the possibility of becoming parents one day and the vision of what is considered as "normal". So what about when what happens is not considered the norm. How does that make you feel? Well as i write this bedside at Lily's crib I can honestly say it is the most beautiful and amazing feeling in the world. But reaching this feeling has produced different emotions along the way such as sadness, frustration, excitement, anger, angst and fear.

When we first received the news that our pregnancy was not unravelling the way we wanted, i was presented with the very real task, as man of the house, i had to "man up" so to speak and gather strength from every part of my being in order to move us forward solidly and safely. Does this mean I ignored my emotions along the way? Not at all, but it's hard to explain. It is quite a traditional idea to say "men shouldn't cry, or share their feelings". I don't agree, and I have certainly shed a tear and spoken about my feelings throughout the last 23 weeks. It is when I have been away from Robyn however that my mind has allowed me to let my guard down and share a tear with a friend or colleague. When back at Robyn's side it's like my "man brain" stooped in 1000s of years of evolution said to my physical being, "man up, suck it up, don't complain, do whatever you can, listen, love and read Robyn's physical and emotional cues really well because that's what she and the situation needs right now".

I like to consider myself a sensitive new age guy. I do housework and cooking and can have an honest conversation about my feelings. I have always been pretty well grounded on a personal level. But prior to our recent circumstances I had never been in a situation where I had to be so consistently solid, strong and stable for someone else for such a length of time while going through such an emotional roller coaster myself. For Robyn this has been a ride that has been both emotional and physical. We have been faced with unpredictable, inconsistent and unreliable situations everyday. I have had to "man up" on a daily basis and ensure that she could always find strength and stability in me. This situation has given me an opportunity to grow as her husband, build on all the strengths of our relationship and begin my role as Lily's daddy. I don't feel I can take full credit for my ability to "man up". I had a wonderful teacher in my father who taught me over the last 34 years what it means to be a great father and husband. Thanks PV!!! (Aka: Papa Vicoosh)

I'll finish this blog with a message for husbands:

If faced with the same or similar situation you would or already have done the same thing. If your partner, family or friend needs you, let your highly evolved man brain do its thing and be there for them. Don't complain. Stay in control of your emotions. Husbands, be the man your wife needs you to be. You know her best so do what you need to do. Realize that changing her sadness to happiness is probably an unrealistic expectation right now. You can still comfort her, listen to her, care for her, make her feel safe and distract her if possible. This in time will lead back to happiness when the storm has passed. They do say "happy wife, happy life". If all this is too much to remember then men I hope you have taken away this blog's key message to...............MAN UP!!!!!

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.