Wednesday, May 11, 2011

The Known and The Unknown

23 weeks + 4 days, 6 weeks + 6 days post rupture, 1st day at my parent's house

(Note: Doctors are putting me 2 days behind this due date I'm 23 + 2 according to them).

I lasted 5 days in hospital before I couldn't take it anymore. I was lonely, sad, miserable, uncomfortable and not sleeping. But the straw that finally broke the camel's back?

I have no fluid left.

It is all gone.

Acorn continues to be breech, and it sitting directly on my cervix. Any fluid he makes immediately comes out. Unless a miracle occurs, I think my days of building up fluid are over. It feels like the universe is conspiring against us.

After my ultrasound, I laid in my hospital bed and cried and cried (while my room mate sat behind the curtain and chatted with her Dad. Weird feeling to be sobbing and in the depths of despair while overhearing normal conversation). I had hoped for even just a bit of fluid. A lovely pocket or two. But the ultrasound now looks just like Aidan's. A baby who is jammed between a giant ball of a placenta and the uterine wall. I was crushed. Brian was crushed.

They sent in a Neonatologist to talk to us. I knew her. She used to be a fellow (doctor in training) at the NICU where I worked. Now she's staff at this NICU. It was weird discussing MY baby with her and not a patient. She knows I know the score. She stated that their hospital's 24 week survivor stats are about 60% (better than I thought, although she didn't comment on their 'intact' survival rate). However she did say that baby's born to pPROM moms tend to do poorer than a 24 weeker whose mom has just gone into labour after a normal pregnancy up to that point. She didn't say how much lower our chances of survival were, just 'lower'. Basically said it would be evident immediately or very shortly after delivery as to whether Acorn's lungs had developed enough to continue life support. It was awful to watch Brian during this conversation. He just sat there staring into space. It was like he wasn't listening, wasn't hearing...had just shut down. It was kind of scary.

My doctors were happy to let me go to my parent's place. They know I know how bad things are. There was and is nothing they can do until "24 weeks", and generally they wouldn't even have considered admitting me until I reached that point (which is Monday in their eyes). So last night we packed up my stuff and came to my parent's house. We have a letter to give paramedics directing them back to that hospital in case I go into labour. They have a file started on me in L&D triage so hopefully there will quicker action and less 'fussing' if I roll through the door in labour(last time they wanted to put me on a monitor to detect the baby's heart rate and have me pee in a cup...and I was in too much pain to say "JUST START THE FUCKING IV IN CASE I CODE!!!!" I have since directed my family to advocate on this point for me).

I tried to stay at the hospital for my husband's sake. I know he was more comfortable having me there...but with the hopes we are being given right now (literally zero unless I can make 24 weeks and even then it's low), I just couldn't stay there. I can't lay in that hospital bed, with the baby's heart beat being checked multiple times per day, and people asking me if I know whether it's a boy or a girl, or seeing posters on the wall about baby development and breastfeeding...and all the while thinking, "what does it matter?" As much as I love Acorn, being in that hospital doesn't help him at all right now, and while it might marginally make me feel medically more secure, it was crushing me emotionally. I kept having panic type attacks and each time I would be afraid to alert the nurses in case they thought I was in labour, or something bad was happening with my heart. I feel I can monitor myself just as well here. I'm now living 20 minutes down the road from the hospital. I just hope it will be close enough if anything starts to happen.

It is awful to be caught in this world of 'knowing' and also 'not knowing'. We know how hard it is to lose a child. We know how scary and possibly dangerous my delivery might be. We know how important it is to be close to medical care. We also know I recovered well from delivery last time. We know we got to spend precious time with our child after I delivered, even though he was dead and that we will cherish those memories forever. We know how much we love Aidan and how much we love Acorn.

We don't know how much longer I'll stay pregnant. We don't know if Acorn's chances will be zero or > zero when he eventually arrives. We don't know how sick he might be if he does make it through the immediate delivery period. We don't know how well I'll handle delivery. We don't know how we will financially cope with all the income lost over the last few months. We don't know when would be a good time to be admitted back to hospital if I do continue for more weeks. Should I go back at 24 weeks or wait longer? Will me being hospitalized make a difference or not?

The weight of the decisions, sadness and the unknown is almost unbearable.


  1. This is absolutely tragic. I was so hoping for better for you and Acorn. At least you will feel better at your parents' house, especially if they are good at coping with highly stressful situations. Please tell us if there is anything that we can do to help. Perhaps you should consider putting up a donation fund on your blog, I am sure anything is helpful at this point in time.

  2. I agree w/ MrsH, Iwas thinking this too. I would totally donate.
    Thinking of you and Aidan, and Acorn and your hubby. I am so sorry Emily.

  3. I am glad that the one thing under your control you have been able to change for yourself... being out of the hospital and at your parents. I just wish that things were so different. I know there are no answers to the many questions and thoughts you have right now... and I am sorry that at the moment there don't seem to be an y answers. You are in my thoughts....

  4. I'm sorry, Emily. So many are here with you, anxiously awaiting updates, wishing we could help, fix it, make it better. I hope being at your parents' house is relieving some of the stress and anxiety.

    I agree with pp about a donate button, I think it's a great idea.

  5. I'm so, so sorry. Not that it helps you, but I wish I could reach through the screen and let you know someone cares about the pain and horror you're going through.

  6. I am so very sorry....

    I know what I felt like 2 years ago at this time when I thought I might lose my 3rd baby and its unbearable. Please be gentle with yourself....

    I mailed the tiny gown I told you about....You should have it very soon. I am still praying you won't need it.

    I've also been mom to the 23 weeker and had to make life/death decisions for them. They both ultimately died but I am glad they at least had a chance.

    ((Hugs)) I wish there was more I could do....Just know I am thinking of you.

  7. I hope being at your parents can provide at least a little comfort compared to the hospital but this just isn't fair.
    I agree with everyone on a donation button, I just wish I could help more.
    Always thinking about you and acorn..

  8. I hope that being out of the hospital can provide at least a little comfort to you at this hard time. I am so sorry that you didn't get the news you wanted at your ultrasound, the unfairness is sickening and I am just so sorry.

    I agree with the others, I think a "donate" button would be a great idea. I know lots who would love to help out in some way.

    Thinking of you and Acorn.

  9. I'm just so crushed reading this. I can't even begin to imagine how you are feeling. This is a tragedy in every sense of the word.
    Love coming your way from all corners of the globe. I only wish I could do more.

  10. I'm so sorry Emily. I just hate, hate, hate that you and Brian are going through this. It is so unfair.

    I'm glad you're at your parents house. This living in limbo is hell, even worse when you are totally uncomfortable with your surroundings. I wish I could do something, anything, to make it better, or even just a little easier.

    Thinking of you all the time.

  11. My heart is breaking for you!!

    I am saying a prayer for you and Acorn!!

  12. Sending you and Acorn a heartfelt prayer...

  13. So very sorry...and I know that doesn't help...but I am thinking of you and furiously praying for a miracle

  14. Wishing my words had the power to "fix" things. Holding you and your family so close to my heart.

  15. I am like the previous commenter, I wish my words had more power and especially that they didn't seem so hollow. I mean it so much that I'm praying for you and Acorn nightly and I'm frustrated with you. It's furiously unfair for you and your family.

  16. I know I don't comment often on your blog, but I want you to know I keep you and Acorn in my prayers. Everything is just so unfair. I'm just so, so sorry. I wish there was something I could do. I know that sounds trite... but I do mean it sincerely.

    I am glad you are in a place where you feel better.

  17. i am so sorry you are having to go through this. there are just no words. you and your baby are in my thoughts and prayers. i wish i could reach through this screen and hold your hand. much love to you and i wish for some sort of peace in your heart at this time.

  18. Oh my dear. I am just so very sorry that the news from your ultrasound was not better. Thinking of you and your family.

  19. thinking of you and your husband, Acorn and Aidan too of course.

    hoping for some sort of peace and good news.

  20. so so sorry. I just don't know what to say! I wish I had some great advice but I don't. All I know is if you feel more comfortable out of the hospital then thats where you need to be. I am thinking of you!

  21. Oh Emily, I'm so very sorry. Sorry for everything you are going through and everything you have already gone through. I wish I could say something that would give you some peace or even hope, but I can't find the words. Just please know I'm thinking of you and your two babies. Do what's best for you and your baby....and make yourself as comfortable as you can in this difficult situation. ((hugs))

  22. You have been in limbo now for so long. I understand how difficult that is and my heart goes out to you. With our son I was in the hospital for two weeks hoping to save him and then another three at home hoping for the same. It is horrible to have your hopes raised one day only to have them dashed the next. At one point we just wanted things to know which path we were going to have to travel, even if it meant traveling down the darker one.
    We were also left with the decision of what to do once he was born; comfort care or the NICU. We knew how sick he was and for how long and how little chance he had at a quality life if (and that was a big if) he survived at all but making that decision was nearly impossible. And, of course, there were always the concerns about my health; the heart medication making things dangerous for my own heart and the possibility of developing HELLP or Mirror Syndrome...It was all terrifying.
    I wish you didn't have to be contemplating these things, truly. You are right it does feel unbearable. I hope that things turn around for Acorn and that you stay safe.

  23. I feel compelled to comment but know that I have nothing 'useful' to say. As always I am thinking of you, Acorn and Aidan. I am hoping and praying for you all. I just wanted to let you know that. xx