THE FIRST THREE WEEKS...

March 20, 2017

The day after Leo was born, he was taken to another hospital by ambulance for additional testing on his heart...in front of a full waiting room I waved goodbye to Leo and Rod as I was not able to go with them.

 

I remember walking back to my room thinking less than twenty-four hours ago I was pregnant, was this really happening? A girlfriend was waiting in my room when I returned, probably the most emotional of my friends but she was a rock, barely a tear shed. This was because of her long history with her Aunty, who has Down syndrome.

 

I now had a heap of time on my hands to reflect and take some of it in. A friend of mine once said to me prior to Leo's birth that "sometimes living between a world of hope and fear is easier than accepting reality", upon reflecting on this, and even though the genetic testing would take days to be confirmed we decided to accept it straight away and our focus was his heart. 

 

Later that night after Rod returned from the hospital, a very happy Dr Feelgood visited us and informed us that there were no structural issues with Leo's heart and confirmed that a valve, which is very common in ALL newborns just hadn't closed yet, however with the predilection that Downs babies have for cardiac issues it was best to have this checked so we knew for sure.

 

We then also received the good news that Leo would be back with us the next day.  

 

In hindsight it's quite surreal seeing your baby hooked up on monitors and tubes, and even after being told about his health issues, it was even harder to realise that these were not the most difficult things we had to deal with. 

 

We quickly realised that it was telling family and friends about Leo's various health issues, and having to deal with their emotions, when all we really wanted was to be congratulated and not pitied or consoled. 

 

To deal with this and not continually burden ourselves with others emotions, we decided to pick 'victims' on a daily basis, people we'd recognise as being strong enough to deal with the news of Leo's diagnosis in their stride, all the while maintaining support for us, but you can read more about at a later date.

Let the feeding frenzy begin!

Over the next three weeks after Leo's birth I had started maternity leave and felt like I was a dairy farmer, three visits to the hospital a day for feeds starting at 6am and expressing overnight. Just picking him up to feed was a maze of cords and sensors which ultimately would be knocked, sending ER style alarms off on the monitors.

 

Often new dads would spend a couple of hours in the nursery while their wives were in recovery after C-Sections, I would knock a sensor and a midwife would ask "All okay Naomi?" "Yeah I think so, just knocked a sensor", with tongue firmly planted in check the nurse would say "No problems just let me know if he changes colour", these lighthearted comments have probably scarred a few new dads, but reality was that I had to watch for colour changes when feeding him. 

 

Spending that much time in special care we realised that we were lucky compared to others ... he just needed a little oxygen, Leo was also the heavyweight in the nursery weighing 3.5kg, about 1.5kg heavier than all the other bubs, because of this my sister affectionately nicknamed him "Chunky Monkey". 

 

I would see and hear expectant mums doing tours of the ward talking about "what pram, which baby bag are you getting?", I'm sure they could hear my eyes figuratively and literally at times rolling in my head and I remember thinking to myself, "That was me a few weeks ago, now I just want my kid's oxygen levels to rise".

 

Emmy met her little brother and immediately had the nurses engaged with her repeated constant of "Bubba sick", "Bubba sore" for the next three weeks, we were amazed though that a twenty two month old would be so aware and concerned, so we limited her visits to the hospital in attempt to keep things normal for her, and maintain some order in the nursing unit. Note: a near two year old and sterile quiet environments don't mix!

 

Only us and grandparents were allowed in the special care nursery so the rest of our family and friends only got to see photos. Slowly the oxygen Leo was on was decreased and after eight days he had a bath, I excitedly sent a photo of the midwife bathing him for the first time out to our siblings to realise later that her "thumb" placement was not ideal and had to send a follow up message saying "Rod will claim that is genetic ... but that is just a thumb!"

 

After what felt like months but was actually weeks, Leo was discharged and came home on his actual due date, we were officially a household with 2.1 kids ! (the .1 representing the extra chromosome).

 

 

 

Share on Facebook
Share on Twitter
Please reload