Grieving and coping after the premature birth of your baby

I just found an excellent article online here: http://www.preemie-l.org/ALEXIs21.html

This article really mirrors my own experience of worrying about my emotional responses to having a premature baby.  It has taken me a long time to figure out what was going on, and to move forward and feel that I was healing.   I wish I’d found this a long time ago!

My favourite NICU photos

Recently on the Li’l Aussie Prems website there was a thread where people posted their favourite NICU photograph(s). There were a lot of beautiful photographs.

I found it hard to choose only one, and in the end chose four.

This is her perfect little foot on day 3, the day of her lowest weight (795g).

Avoiding the paparazzi.

Our fingers touching. She is one month old. This photo is slightly out of focus and I intended to try and take it again, but without warning she graduated from the humidicrib to an open cot.

Guess who’s cycling off CPAP and just pulled her feeding tube out again? This is our first photo of her smile.

On a related note - I recommend you take lots of photos AND make a backup copy.  I lost many of my early photos of Talia when my hard drive failed a few months after she came home and I had no backup.

95 days later

Last night on a parenting forum I came across a post from the mother of a little boy who had been in hospital for 95 days - exactly the same length of time as Talia - and who had now just passed the milestone of having him home for 95 days.

It took me straight back to the same moment in my life, and I went and found the blog entry I wrote for the L’il Aussie Prems website at that time (my first blog post ever, before I had a website of my own).  Here it is.

95 days later

By Finisterre on September 29th, 2007

We celebrated a special family milestone this week: following 95 days in neonatal hospital care, our prematurely born daughter Talia passed her 95th day at home.

191 days before this milestone, I was a different person. Walking with blind faith through a seemingly ordinary first pregnancy, I knew nothing about prematurity, had never heard of CPAP or NEC or ROP, wouldn’t have known a bradycardia from the Brady Bunch, and had never experienced the indescribably gut-wrenching fear of losing a child almost before its life had properly begun.

Today I am the mother of a petite, smiling daughter who should only be three months old, not six. Looking back on the extra three months of daily hospital visits, I remember urging my little scrap of humanity to survive, anxiously checking for any gain in her weight, increase in her milk intake or improvement in her breathing, and I realise just how much further families of prem babies need to travel in order to arrive at the same place as families with healthy full term babies. It is an emotional journey on rough roads through strange territory, navigated via heart-rate and oxygen monitors, and not a few prayers. This neonatal landscape has changed us forever, left its shadow on our hearts, and opened our eyes to fears and wonders never before encountered.

After 95 long days, one journey finished and a new one began. We have been blessed twice over, both with the life of our child and with all we have experienced and learned about her incredible survival.

And here’s the munchkin at that age:

In this season of joy

A number of mothers on the L’il Aussie Prems website were making or organising little gifts for the parents of babies still in the nursery over Christmas, and I thought it would be nice to contribute a little something.   So I made some little paper baubles that can later go into a scrapbook or memory box.  I know I treasure the little keepsakes I received while Talia was in hospital.

Each bauble reads:  Beautiful baby… in this season of joy, you are the most precious gift.

I took them into KEMH yesterday, and was very happy to meet several staff members who remembered us, and commented on how well Talia is doing now.

Happy Father’s Day

Father’s Day: the media is full of images of happy, healthy children rushing to give their much-loved if slightly hopeless father a blokey gift, but when your little one is still in hospital the stereotypes are meaningless and all you really want is to have your child come home.

What is the role of a father of a premature baby? When my daughter was born unexpectedly early, my husband missed the birth completely - no magical memories of cutting the cord for him, he wasn’t even able to hold my hand. While I found myself on early maternity leave and able to spend all day in the NICU, he was still at work - sometimes far away. It made no sense for him to take his one week of paternity leave until we brought our baby home, at which point his employer initally refused to grant him the leave because it was more than 3 months after her birth!

My husband shared all my anxieties about Talia’s health, not to mention the broken sleep as I rose twice a night to express, without the joy and reassurance of being able to hold his daughter for days on end. He visited the nursery in the quiet of the evenings when the doctors were gone and the lights were dimmed, and sang her soft songs of love below the beeping of the monitors.

Now more than a year later, he still sings her songs. He holds her tight and reads her books, sits on the floor playing with her as soon as he gets home from work, pushes her on the swing in the park and rejoices in every little milestone. He knows how lucky we are to have her, and I know how lucky she is to have him too.