Tuesday, 24 September 2013

One month on

It's hard to believe this time 4 weeks ago Martha Grace was only just out of theatre. When I look at the photo's of her from that night (which I can't post because they are far to graphic) I can't believe it's only been 4 weeks.

When we were summoned in to see her the scene we were met with was frightening.

There were tubes and wires coming out of her. Her stats were all over the place. The Doctors and Nurses were working frantically around her. All trying to stabilise her.

She'd been in Hypothermic Arrest for over 40 mins and she was sick, really sick.

The had a lot of fluid on board which they needed to drain but her kidneys weren't working properly (or effectively, which is what they would say to us)

I thought the day of the surgery would be the worst but I was wrong, the 4 days after were by far the hardest of my life. Spending each day hoping and praying that our tiny Baby Girl would find the strength from somewhere to recover from what she had just been through.

The Doctors could hook her up to all the machines and pump her full of all the drugs in the world, but ultimately it was up to her little body to do all the work.

If someone had have told me on the 27th August that in 4 weeks time we would have already been home for 10 days, I would never have believed them. I could not see it at that time. I couldn't even look as far as the next day, let alone the next week or month.

But nonetheless - a month on and she is home. In a weird way it feels like she's only a week or so old because we've only just got her home - it's strange that she will be 5 weeks old on Thursday.

If you didn't already know she'd had surgery you would think she was like any other perfectly healthy baby girl. She screams when you change her nappy, screams when she's hungry, loves to kick her legs about when she's lying on her mat, loves cuddles. She is just like any other Baby Girl.

The hardest part of being home has been feeding. With the other two, if they didn't finish the final ounce of their feed I wouldn't worry, it was only an ounce. But as Martha needs to gain weight to fit in to her PA Band and become big/strong enough for the next Operation (to close the VSD, the hole between the two ventricles) she has an exact measured amount she MUST have. Which is 140ml per kilo, for her it's worked out at 65ml every 4 hours.

But babies aren't always hungry enough to finish every feed. Heart Babies tire very easily when feeding. But with Martha every millilitre she left made me nervous. I was worried sick what the Health Visitor would say if Martha hadn't put enough weight on. So we would give in and give her the last of her bottle through her NG tube rather than push her too far.

The funny thing is that since she pulled out her NG Tube she has finished every single bottle orally, there hasn't been a drop wasted. Normally I would increase a babies feed when I thought they might need more, but this time it isn't my decision to make. I have to call the dietician to find out how much I can up her feeds by, I wouldn't dare to decide on the amount myself.

It feels like we've borrowed her and that she's not ours as we have to seek "permission" before we can do anything (ok I'm being slightly OTT there, but you get my drift) But at the end of the day it's only a small price to pay to have her here, safe and most importantly - ALIVE!!!

GM
x

The night she came out of theatre               A week after surgery with the CPAP


At home - NG still being used                                       Been home a week already

With her delighted older Brother and Sister               4 weeks post-opFast asleep on her changing mat