Sunday, May 8, 2011

I hate it here

23 weeks + 1 day, 6 weeks + 3 days post rupture, day 4 in hospital.

I hate it here. I really do. I am not getting the same amount or quality of sleep that I got at home and that makes me very very anxious and dread going to bed. Even when I manage to fall asleep I wake up a lot. My husband stayed over last night and he fell asleep faster in the lounge chair then I did in my bed. The bed is not all that comfortable and I HATE HATE HATE being in a semi-private room. There is no privacy. My room mate now knows my entire life story after me having to reiterate it so many times over the last couple of days. I don't really CARE per say about this (I'm much more uncomfortable with the physical intimacy of sharing a room rather than the information sharing), but it makes the idea of our 'health care information being private' such a joke. I always thought that as a nurse when I'd have patients in multi bed rooms, but it really brings it home now.

The nurses also wake me up at 6:30 am to give me medication (antibiotics) and to take my temp, my blood pressure, my heart rate and my sats. After this I have a hard time going back to sleep. Then the night nurse goes home at 7:30 am. By 8:30 am the day shift is trying to get all their assessments done and come in to do my room mates vitals and listen to her baby on the monitor. LOUD LOUD LOUD. At home I was going to sleep around 1-2 am (normal for me because I was used to working afternoons) and sleeping usually fairly soundly until 11am. I felt well rested and I didn't worry about people waking me up. Actually the morning is when I would feel the best and the least anxious.

I'm also way more terrified of contracting an infection here. I don't have a washroom all to myself and I scrutinize everyone who comes in my room (sorry my 'space') as to whether they've washed their hands or not. I'm going to start using my own toilet paper and I have antibacterial wipes to try to keep myself and the toilet seat as clean as possible. It's awful worrying about this all the time. I know I could get an infection at home (in fact I did develop an infection in the placenta with Aidan which is what likely threw me into labour), but I wasn't being nearly as careful last time as we weren't entirely sure I actually ruptured until very close to the end of the pregnancy. It sucks to have to carry my toilet paper, pads and sometimes wipes to the bathroom every single time I have to go, since that happens about 10-12 times per day.

I am regretting my hurry to be admitted. At home I was nervous about going into labour and not making it to this hospital in time. I was worried about the effects bed rest was having on me physically. I am still nervous about that 'end point' and what it will look like (major pain? infection? deleterious effects on my heart?), but do feel confident that the medical team will be more 'on top of it' than they were last time (all that monitoring they are doing has GOT to be for something). On the other hand I'm now anxious and stressed and depressed all the time just being here. I cry multiple times daily, while at home I cried maybe once or twice a week. This place is bringing down my mental state and I'm afraid if the baby dies, I won't be in a healthy mental state to cope with it.

An alternative to staying here is going to live with my parents who are about a 15-20 minute drive away (7 minutes if there is no traffic). I would feel physically more comfortable living with them and I am pretty confident that this is the hospital the ambulance would bring me to in the event we had to call one (whereas if I were at my house this is not the closest hospital). My parents are more than willing to have me live with them, and for the next week and a half my mother is actually off work so there would be someone with me at all times.

Brian, however, feels I am in the safest place and would be angry with me if I said I wanted to check out. He is already talking about spending $100/day to get me a private room here at the hospital if that is what would make me more comfortable. What I feel he doesn't get, is that I don't WANT to spend $700 a week on a hospital room!!! That seems insane. I don't WANT to carry any more debt. Would I be more comfortable in a private room, yes, absolutely...but probably not $700/week more comfortable!!!!

What I would like, if he won't let me leave the hospital, I would like Brian (and our cat) to stay with my parents. I feel it would solve a lot of the 'extraneous' worries I have that don't involve myself or the baby. If my husband lived there he could take the subway and be here soon after work to be with me in the evenings and on weekends. This eliminates the parking concerns down here at the hospital (he can't arrive before 6pm on weekdays or otherwise it's $20 to park). It also would mean my parents could do things like shopping, cooking, cleaning and spending time with our cat so that Brian could spend more time with me. I hate that he had to go home today at 3 pm in order to get those types of things done, and I feel guilty wanting him to stay because I know he needs to shop, clean, make meals and generally take care of our house while I'm here. Plus at our home he's still 25-30 minutes away at night (or more if there is an accident on the highway) if something happens and I go into labour. If I needed him in a hurry I would feel a lot more comfortable with him being close by then farther away at our house.

His reasons for not wanting to stay with my parents are EXACTLY the same as the reasons I don't want to be at the hospital. In short, he wouldn't feel comfortable. He wouldn't have his own bed, his own stuff, his own bathroom, his own computer. I get it. I really do (obviously). But come on! I would have no desire to live with his parents either if the situation were reversed, but the savings in parking and gas ALONE would be worth it to me for the inconvenience of having to 'move'.

Maybe I'll feel better if I make it to 24 weeks. But, something tells me I won't feel more 'hopeful' until closer to 26 weeks plus. Honestly, I'm not sure I would want to do 'major' resuscitation on a 24 weeker. If the baby arrives at 24 weeks and attempts to breathe and cry, of course, intubate. But what if two days later the baby has brain bleeds, and needs higher and higher levels of O2 or respiratory support? What if the baby develops a major infection? Yes I know the general public seems to feel '24 weeks' is a major milestone, but the stats say only 40% of 24 weekers live, and less then that survive without major complications. I know. I've seen it. Parents sometimes get so caught up in the 'That's my baby! Do everything to save my baby!' that they don't consider who they are 'saving' their baby for. Being a parent means making hard decisions...and I want to keep my baby's welfare in mind, rather then my own desire to have a living child.

I've said it before. I would bring Aidan back in a heart beat, but I wouldn't bring him back to live a life that I wouldn't want for myself. Could I accept a G-tube? Yes. Oxygen for a period of weeks or months? Sure. Physical therapy or surgery? Yep, we can deal with that. But there are outcomes worse than death that I wouldn't want for my child. I just really hope I can physically, mentally and emotionally cope with what is to come.

If you want to leave a comment today please be mindful of my mental state. As much as I know everyone is trying to be hopeful for me, I'm just not there today and cheerfulness is too much to bear at this point in time.


  1. I have no words other than I am listening. We are listening to all you have to say and I hope that it helps a little to know that.

    Sending love as always.

  2. Emily, I hope that knowing that we're here and that you are able to get your thoughts out helps. I truly do.

    I again, even with your current state, admire your ability to be logical (extra money for a private room, your cat, your parents). If you would truly be more comfortable staying at your parents, then perhaps that's what you should do. After all, this is your mental state that we're talking about. I know it's your husband's baby, too, but you're in the hospital, all day.

    Keeping you in my thoughts.

  3. I have no other words either. Just that I am here, I am reading all your posts, and I am thinking of you all the time.

    Sending you love.

  4. We received Xavier's post mortem from the coroner on Thursday. We made the choice to have him removed from life support for the very reason you wrote, that there are worse things than death as far as outcomes, and we didn't want that for our child.

    Please try and stay hopeful. I know that is a tall order, but I think you both can make it, I am hopeful for you...

  5. I don't know you at all, therefore I don't know your financial situation. I however, can put myself *slightly* in your shoes and imagine how uncomfortable I would be sharing a hospital room with a stranger while already in a fragile state of mind. If it is at all possible for you to spend the extra $100 a day to have a private room, I would seriously consider that.

    I can only imagine if I were in your shoes, the tremendous amount of relief I would feel in having my own room. And I do mean tremendous, I'm a private person and sharing a room would make me feel horrible.

  6. Hi, Im listening too, and feeling for you. I think your reasons for wanting to move to your parents are entirely valid, understandable and sensible. Your mental well being is so important too! Hope Brian can understand. Praying, Susie in New Zealand

  7. I hated having to share the room. That was the WORST part of it, and it made everything else horrible. When do they say you can move to a private room? I was told that I could move when I had been there long enough and it was in the order of seniority. But about four nights in I went insane. I cried and cried and told the nurse that I was going crazy. My roomates pregnancy was not nearly as high risk as mine, and I was jealous and I was having anxiety attacks. Can you tell them that this is affecting your heart and anxiety? If not, then I would consider paying the extra money if you guys have it. It made all of the difference for me. Once I got into my own room, I actually started being okay with the routine and everyone barging into my room. I had my own tv and I pretended like I was in a hotel. During the 6 week stay, I didn't think that i enjoyed it, but now I actually look back on it with fondness. (I think that is partly colored by the outcome, but the single room did make the biggest difference).

    I think if you had your own room you wouldn't want to leave. I think you need to do what you need to do, so if you need to go, then go. But you are in the safest place and they have the monitors and can tell when anything goes wrong. If Acorn starts deceling, they can get you into emergency surgery right away.

    I hear what you are saying about wanting a quality of life for your child. Having a premature baby has been very difficult, and we did just get the g-tube placed last month, and there are many unknowns for her development. We were never in a "save my child no matter what" mode, and I may have been one of those parents, so I am thankful that that didn't happen. But you are very clear-minded about it, and I don't think that is going to change once you have him/her.

    Do what you need to do for you. Just make sure that you try everything you can to get that room. I really think once you are there you will begin to feel a little bit better, or even a lot better.

    Okay, no cheery stuff from me today...I say cry and cry and cry and let those nurses see you crying and maybe that will get you your room. (My nurse was an angel and did it as 1am and somehow pulled some strings.)

  8. As mentioned in my last comment, when I was 22 weeks in L&D and shiz was going bad but I wasn't "in labor", I only stayed for a day. For the past year I've battled with myself because I felt like I didn't fight for my child and maybe I should've demanded that they admit me. I have no idea if this would've changed the outcome for my son but, of course, I look back and wonder how I could've helped him more than I did because of how much I miss him and love him, etc. Reading this post is enlightening because I can place myself in your shoes, in the hospital, and I see how frustrating it would be.

    I don't think anyone knows what you should or shouldn't do. Trust yourself. You simply have to. If living with your mom is unacceptable, at least consider a private room. Also, 1.5 weeks with your parents should be something your husband should at least consider for you. If they can lift some of your burden in any way, shape or form, let them. It just sounds like something needs to change for you.

    Thinking of you and Acorn.

  9. At least you know that if you still hate it there, you're still sane!! I think someone should smuggle a water pistol into the room for you; then you could put disinfectant into it and decontaminate people before they went into your loo!! (Sorry - this is my extremely lame attempt to make you smile. I'm sure it's not working, but I just thought I'd let you know I wish I could.)

  10. I wanted to let you know that I just went back and reread all of my bedrest posts...And I was miserable. Just miserable and bitter and angry and everything. I did hate it there. So I think that it is a normal thing to hate being on bedrest in a situation where you don't know the outcome.

    I like what T said...Trust yourself. You know what is best for you.

  11. Ugh, I am reliving those days through you. I was exactly in the same situation, but had the private room, and it did help, although if I had to pay that much I would also have said no. I also wanted my husband with me all the time, and he had to go do the house/pet maintenance, plus he refused to stay longer than a few hours because it was making him depressed more than he could handle. He wanted to escape a bit, and trust me I also did but was stuck in bed in Trendelenburg. Let him do what he needs to do, in retrospect it was good that I did because you don't need a worn out husband to deal with as well. It is a very hard situation, and especially today it is a very hard day. Maybe leave the resuscitation questions for another day, it is too much to think about right now. If it happens, sometimes you decide based on the moment and on what the baby does and looks like. The peds do help with the decision too, and will guide you. I would talk to a pediatrician, even if you know the stats and the potential complications, sometimes they can give you a bit of structure in this difficult decision.

  12. It sucks the big one Emily. There are no sugar coated words that will make you feel any better about your situation or you state of mind.
    How are you with swearing? In some of my darkest moments I find that a good strong f-bomb at least cracks a small wedge into my dark heart. I am thinking of you....

  13. What a horrible way to spend any day, and especially mother's day! I hope you at least give yourself credit for being an AMAZING mother, fighting so hard to give Acorn the best chance. I know that you don't have a lot of choices right now and even when you do have choices (like private room or not) all the options suck.

    It's a small thing, but maybe you could sleep in the lounge chair and your husband could take the bed. I did that my last time in the hospital and the nurses were a little surprised to find a man sleeping in the bed, but it really helped me sleep better.

    Thinking of you every day and hoping...

  14. Having to share a hospital room sounds horrible, but so does $700 a week. I keep praying for you to reach the 24 week point also but I understand what you mean by the low survival rate and the chance of your little one having serious health problems being born so early. It's all so scary.
    Thinking about you and Acorn daily...

  15. I am so sorry Emily. During my 10 weeks of pprom I was hospitalised 3 times all times being in hospital for 4 nights. I am so grateful I could spend the rest of the time at home. I too hated it in hospital. I had to share a room with 3 women whose biggest fear was delivering at 34 weeks, something I would have loved. I also felt the same about resuscitation at 24 weeks though I am not sure what I would have done had it actually happened. I really feel for for you and wish I could help.

  16. Just so bloody unfair. All of this. Sending so much love. That's all today.

  17. I can really relate to most of this post but especially to what you write about "saving" the baby. That is exactly how we felt when we were preparing for Harper's inevitable delivery at 26 weeks. We knew the odds were stacked against her and we didn't want her to suffer, didn't want to "save" her for our own selfish reasons just so she could have a shitty quality of life. It sucks to have to even think about things like that but like you said, that is part of being a parent. We never got into the situation where we had to make the REALLY hard decisions b/c she passed away right after her birth but I get it, it is emotionally grueling.

    I have been where you are, waiting for the other shoe to drop every*single*minute*of*everyday, waiting for something else to happen and just feeling so helpless to it all. It sucks and it wreaks havoc on your mental state and I am sorry that you are going through this. Just know that I am here listening and hoping for the best...

  18. Ugh. What a shitty ass situation all around. There's not a clear right thing to do. Is there a fund or *something* they can do to get you in a private room for less than that cost? Your mental health is so crucial. If you're going insane and are miserable, I think it's clearly not the right situation for you. Maybe try talking to the social worker or someone and see if there is anything they can do? Maybe your doctor can convince your insurance company to pay for a private room as a need (less chance for infection, mental state, something??). It's funny...when my water broke with Caleb all I wanted was to get to the point where you are, and reading about you being here...I'm so grateful I didn't have to go through it. I'm so sorry you do. Life couldn't be more fucking unfair.

  19. That just sucks. Sorry you are stuck in the non-private room, is that for the duration or does that change after a certain point in pg or length of hosp stay? I would totally throw the fit of "its hurting my mental health and I am prone to infection" for any and all who make a difference - but I would also be sorely tempted to get the private room by paying if necessary. You NEED that space.

    I would (in my complete ignorance of the situation) explain how DH moving to your parent's house would ease your mind, but not beg him to go as his mental state is also on the edge. Maybe he could stay there 3 nights a week or something?

    I think you probably should stay in the hospital yourself, depressing as it is. You are fighting the good fight, stay strong sister.

  20. Just wanted to let you know I am thinking of you and I do often.

  21. Oh Emily, that sounds like you've had a rough week. I've been away from my blog reader for a few days so just getting caught up. I cannot imagine being in your situation and having to share a room too...ugh!

    I totally get what you are saying though about 24 weeks. I've thought about that a lot when people are so thankful to get to 24 weeks, because although I know it at least gives babies a chance I know all to well that there are still many things that can go wrong with these tiny ones too. Obviously, you know too and sometimes knowing is worse. There are plenty of miracles for those babies born early though, so for you I pray for that. And I pray that mentally this hospital stay will get easier for you.

  22. Thank you for letting us know your boundaries by telling us what you mood you are in. There is no doubt how hard it is to just even think of the future outcomes.

  23. I am thinking of you. I spent only a few days here and there in the hospital during my 2 months on bedrest (in a private room) and I was miserable -- they woke me up all the time, I didn't sleep well at all, and my husband was always running back home to take care of the house etc. It's lonely and miserable and I am so sorry you're enduring it for so long. This stuff is probably pretty obvious, but insist on your own pillows (tons of them, including a body pillow) your own blankets and even sheets if you want. Wear your own pjs. Anything to make you feel a little more comfortable. I know we don't know each other and I don't know how much computer time you have, but I do get on google chat a fair amount if you're looking for some online company. I was always desperate for ways to pass the time. Let me know.

    You are in my thoughts!