If you know me in real life and have found this blog, please honour my wishes and don't read on. I need this place to freely write my feelings to help me to heal and if you're reading, I'll censor myself. I have no way of knowing who is reading so all I can do is trust you to honour my wishes. Thank you.

(this doesn't apply to any of my fellow mums of angels I've been lucky enough to meet in real life)

Monday, January 11, 2010

Difficult to Read Things Like This

Yesterday a bill came for Matilda's stay in the NICU. I need to ring them because I was sure that Helen said they did 'no gap' billing in there. I don't really care but it's pretty hard to read.

*****Might be distressing - lists NICU procedures***********
Here's what's on it :

30/10 - Airway access, establishment and initiation of mechanical ventilation
- Central vein catherisation
- Management of patient in ICU

1/11 - Management of patient in ICU
- Central venous pressure, pulmonary arterial, systemic or cardiac intracavity pressure

- Ventilatory support in a ICU
- Chest X-ray
- Chest X-ray

2/11 - Chest X-ray

3/11 - Chest X-ray
Chest X-ray
Chest X-ray
************************************************** ****

I'll be grateful forever that Matilda was delivered alive and we got to meet her but how incrediably selfish of me when I see what she had to go through.

I knew they'd done more than one chest x-ray (I was there for a couple of them) but not that many. They didn't know and could never figure out what was causing her low blood pressure (it was low from directly after delivery and kept dropping even with medication) but every time they x-rayed her heart it just looked strong and perfect.

The best scan we ever had in the pregnancy was one at 29 weeks with a cardiologist. He said her heart looked good and strong. BWS is sometimes (rarely) associated with severe heart defects so we were so relieved to hear that and were so happy that day.

It's a good thing I believe that tears are going to be healing in the long run because there's certainly been a lot of them over the weekend and since I got back.

I just wanted her to be OK.


  1. Oh honey what a list to get given , i dont have words so hugs instead and a verse .....

    Courage doesn't always roar,
    sometimes it is the quiet voice
    at the end of the day saying
    ~ I will try again tomorrow ~

  2. Your desire to be with Matilda was in no way selfish. I was actually pissed Addison was born alive, only to be destined to die. Looking back, of course, I'm grateful for the days we had with her, even if she never knew it. Matilda fought as hard as she could to stay with you. Like you, I believe tears are healing, so let them flow. I hope your time spent with other babyloss moms was helpful, too.

  3. What Kerry said. Courage is letting the tears fall, going to sleep, and waking again the next morning.

  4. Thanks Kerry - I'm here and trying again today. That's really my aim these days. I did two loads of washing yesterday so that makes a good day :-) I have low aims these days. Maybe one day in the future I'll have big aims again.

    Rebecca - I am grateful for the days we had with Matilda. I don't know how I would have coped if we didn't know we gave her every chance possible. The time spent with the other babyloss mamas was amazing - just to see that they've gone on and had happiness in their lives is helpful. It was difficult to stand in a group though and know we've all felt this pain.

    Mirne - You must have amazing courage. I don't know what to say to you - I read about Jethro while I was pregnant and couldn't sleep one night and just couldn't believe the universe could be so cruel. I hope you are finding support somewhere and I think about you a lot. I released the balloons for Freya, Kees, and Jethro in the weekend - they were beautiful. I am so sorry your babies aren't with you.

  5. not selfish. not selfish at all.

    'It's a good thing I believe that tears are going to be healing in the long run because there's certainly been a lot of them over the weekend and since I got back.'

    i bloody hope tears are healing. what a waste of salt and water if they aren't.

    thank you so much for stopping by my blog and commenting. i feel very isolated right now, like i don't fit anywhere. it helps when people stop and take the time to... listen, i guess.

    i wish neither of us had to be here right now. but i'm glad we can keep each other company, a bit, through the pain.

  6. You do fit in - unfortunately there's a lot of us out here. Have you found http://www.glowinthewoods.com/?

    It also helps when people stop and take the time to listen to me - I'm not sure why but I'm going to keep doing anything that helps.

    Thinking of you and I'll be reading. xx

  7. Thanks Maddie. Yes, I hadn't found anywhere or anyone much, but someone pointed me to glowinthewoods from the comments at tomatonation.com and i am so grateful to whoever it was, but they didn't leave a link or email so I can't thank them. I've found my way to a bunch more places from there and it really helps to know other people are coping and have coped with it too. (of course, i would rather this hadn't happened to anyone, but i can't change that one, unfortunately.)

    thank you, so much, maddie. xx

  8. Of course you wanted her to be OK. I've also struggled with whether I was selfish to let G through what she did or if I should have asked them to let her go sooner. But I did what I thought was best and if there was a still a chance for her, I had to take it.
    Please try to let the guilt go (I know it is far, far easier said than done) but every decision you made on Matilda's behalf you made because you loved her. x

  9. I'm trying not to feel guilty and as DH said, if she had made it, we would think it was worth it. And as soon as we found out there was no hope, we didn't prolong things.

    It's just so hard.