Gracie wearing her Earlybirds Isolette/Incubator Suit

To fall pregnant in the first place was quite a shock. My husband Ben and I had been talking about it but we thought there would be many loop holes to jump through before it was possible, as I was 2 and a half years post a Double Lung Transplant. I was born with cystic fibrosis and managed fairly well until my mind 20′s when the wheels feel off and I wound up on the transplant list. Cystic fibrosis is a genetic disorder that primarily effects your lungs and digestive system.

My pregnancy was coming along in leaps and bounds, especially for someone with quite a significant medical history. I was feeling great. Ben and I also travelled to the UK for 5 weeks for a family wedding. I was working as a Registered Nurse and although a bit tired,  had no problem. I was, however being monitored very closely by  the obstetrician, transplant team and GP.

I was 28 weeks when my world came crashing down. Arrived at the usual antenatal appointment. I was attending the high risk clinic just to be on the safe side. This fateful day my blood pressure was up. I had every excuse, I was running late, ‘sorry I hurried to get her, sorry’. I was apologising like I had let them down.  Dr’s told me they’ll recheck it once I’d calmed down. Calming down seemed impossible at this point. I was already starting to stress. My urine test came back that I had protein in it. Now was when I started to panic. It was suggested I attend the birthing suite so they could take some formal blood tests and monitor the baby. My heart was pounding. I rang my husband crying. I’m sure I felt like I was sinking. I’d been so perfect, I was totally in denial. No, No I feel fine. I did. Pre-eclampisa was thrown around a bit but I choose to ignore buzz words.

We stayed overnight that night and the next and then for the next week. Turns out I did have pre-eclampisa, I can now say one of the most horrible diseases ever.  Steroids were given to me for bubs lungs if it made an arrival. I was monitored constantly. Blood pressure medications were started and increased, and increased to no avail. After 2 nights at the local hospital I was transferred to Royal Woman’s at Randwick. The best place for a premature baby.

This was just the beginning of my nightmare but at the time Ben and I were staying positive. Bub was fine, lungs were fine. It’ll be ok. The next few days things just keep going down hill. I started to swell with fluid, clinical sign of pre-eclampsia. Blood pressure never got under control. I got the ‘blues’ from one of the meds, cried all the time and completely irrational. Even telling Ben I felt like a single mother already and I hadn’t even had the bub. Explain that!!

Each day something new happened and each day my heart broke a little bit more. I wanted this baby so bad.

It became obvious that the bub was coming early. How early we weren’t sure but every extra day was a bonus, even if I was completely cracking up.

The decision was made that pushing bub out was too risky with my BP so high, plus I was exhausted already. The caesarian was booked. More tears were involved, although I did know it was the best option.

The Tuesday morning my kidney function had started to fail, apparently another typical sign. The medical team were amazing and sharp as a tack, they did not miss a beat. More bloods were taken at lunchtime and kidney function had pretty much doubled. At 3:30pm the discussion was made to book a operating room this bub needed to come out asap for everyone’s well being. Ben raced from work still all dirty as he is a tradie, my Dad was by my side, my sister on her way. My support crew on edge and fingers crossed, also trying not to panic. I on the other hand, was crying uncontrollably, trying to give consent, talk about the procedure all the while tears streaming down my face. Crying for what, I’m not sure, shock it was today, scared, angry, tired, I’m not sure.

At 29 weeks gestation on Tuesday 11th September 2012 5:08pm we welcomed Grace Rose Livingstone, 930gram,  into the world. A little fighter already. She was perfect. Had all fingers, all toes and cried. I got a quick glimpse of our little gem and she was whisked off to Neonatal Intensive Care.

I actually thought the worst was behind us. She’s out, she’s safe, I’m well. Little did I know. 10 and a half weeks of living hell. My beautiful little baby was hooked up to all types of tubes and monitors, everything beeped and she chugged along. I’m a Intensive Care nurse myself but gee whizz I was out of my league. My heart was also out of it’s league.

We had good days and bad, I had a lot of bad, Grace had only a few. Mainly to do with her immature gut and inability to break down the breast milk then formula. She did however slowly put on weight and day in and day out we sat with her, chatted to her and cuddled her when we could. Ben with her on his chest I will never forget. My husband,  my rock, my best friend with our precious little bundle. Questions like was she here to stay or just for a quick visit were in my head constantly.

Ben was amazing right from the beginning. He has had practice because when I was sick he was more then amazing then. He would change Grace’s nappy, clean her mouth and talk to her. I caught him one day saying “I’ll be the only man you’ll ever need”, another teary moment. They were the only care’s we could do in the first few weeks. I, on the other hand, couldn’t touch her, she was too small, too precious. Hindsight tells me this was also a coping mechanism.

The days went on and on, then on the 23rd November, just shy of her due date at a whooping 2.435kgs we took our little miss home. Happy, relieved, all an understatement. we could finally be ‘normal’. I could stop living in limbo and out of a hospital,  the guilt feeling of leaving your child at the hospital every night would finally go. No more 3am phone calls to check she is ok, by the way she was always fine. No more calls from Dr’s to tell me she needed a new cannula, or she hasn’t tolerated her feeds.  I was now a real mother!

Grace is now nearly 6 months old. Thriving in every way and close to 6kgs in weight. She is our cheeky little monkey with a smile that melts even the toughest. She has everybody wrapped around her little finger. Ben and I feel so completely blessed to be parents and have such a strong little girl, she is definitely our little miracle.

Earlybird of the Month   –   Each month we give-away a set of garments to a baby in special care.   If you would like to nominate a baby,  just send us a photo together with a few about your special early bird and you could win a beautiful selection of garments from our Sunnydays collection.

Earlybirds Pty Ltd  © Copyright 2013