Struggling Now - Prem Baby

janninew

Hi All

I'm writing this mainly to get my feelings down and because I know some members have been in my situation before and I'm sure can offer some advice or words of comfort which I feel I need today.

I had a baby girl in November at 28 weeks and she was taken to the SCBU. I had pre-eclampsia and had an emergency c-section. I've tried really hard to stay positive (and done quite a good job so far) but today it feels like its getting to much.

My little girl has good days and bad days and at the moment I feel like we take 1 step forward and then 2 steps backwards. The Doctor told me this morning that her heart mumour (which she has had since birth) has gotten much louder and that an appointment with a cardiologist has been arranged for Friday. My baby is probably going to need an operation in the next week or so to correct this problem. This op can't be done at my hospital and she will be sent to a hospital 2 hours away. She also keeps getting sepsis and requiring anti-biotics, this then means she has to have a cannula put in her tiny arm. Everytime I hear her cry and I can't comfort her I feel like my heart is breaking.

The routine and traveling to the hospital everyday is tiring me out as is keeping up with expressing. I'm off to see my GP this afternoon as I'm starting to produce less milk and the Doctor at the hospital said there is a medication I can be given to help. I feel like I've put a brave face on since the birth, but everyday its getting a little harder.

I have good support from my husband and family, but they don't know how i'm starting to feel as I don't want to burden them with my worries when they are worried as well.

The nurse who was looking after my baby today described the experience as being on a rollercoaster and not being able to get off, this is exactly it. I'm always thinking about her and thinking when do I next need to express, there is no break and I don't know what to do with myself at the moment.

I have also spoken with the Doctor who carried out my section and he has advised against any further pregnancies - I haven't even told my husband this as I can't bear to think about. My feelings are all over the place and I feel so angry that this has happened to me when I've always taken such good care of myself, especially during pregnancy.

Sorry for the long post and thanks for reading. I know I have to keep on as I don't have a choice, but writing it down has made me feel a little better.
x

4nnabella

Didn't want to read and run Jannine, although I have very little in the way of advice. I can't even imagine how difficult the last couple of months have been for you, and it does sound as if you are doing incredibly well in the circumstances.

I hope your GP can help you with the milk.

With regards to future pregnancies, all I can suggest is to not think about that now. You have enough to focus on with giving your little girl all the support you can right now, don't stress yourself out further with thoughts of whether you can or can't have another baby just yet.

One day at a time hun xx

ETA - I know you think that your family have enough to think/worry about without you burdening them with your worries and feelings, but I am sure you would all feel better if you talked about it with them. You are all in this together, after all.

ginvzt

Janine, sorry to hear you are feeling down. It is hard, and all i can offer you is a hug, a shoulder, a cup of tea... Please don't close in, it is not going to be good for you in the long run - if you don't want to speak with anyone in person, please, come here and let us know how you are and if there is anything we can help you with...

Don't think about the future - get through one day at a time and see what the next one brings. Hugs!!!!

peachyprice

janninew wrote: »

I have good support from my husband and family, but they don't know how i'm starting to feel as I don't want to burden them with my worries when they are worried as well.

Sweetheart, you're not a burden to your family, they are there to share the good times AND the bad.

Every mother I met in SCBU, no matter how brave and calm they were and how well they seemed to be coping got to a point where they hit a brick wall, it seems like you've just hit yours.

You NEED to tell your husband how you feel, and really hoestly you need a bloody good cry, howl from the rafters if it makes you feel good. I know you feel you need to keep it all together, but you can't take all this pressure by yourself.

It's bloomin horrible walking into the unit and finding out there's something new to worry about, I used to dread it, if nothing had changed in the 8 hours I'd been gone I felt like I was having a good day, but it will get better, she will get stronger.

((((hugs to you))))) it's not a nice place to be right now.

janninew

peachyprice wrote: »

Sweetheart, you're not a burden to your family, they are there to share the good times AND the bad.

Every mother I met in SCBU, no matter how brave and calm they were and how well they seemed to be coping got to a point where they hit a brick wall, it seems like you've just hit yours.

You NEED to tell your husband how you feel, and really hoestly you need a bloody good cry, howl from the rafters if it makes you feel good. I know you feel you need to keep it all together, but you can't take all this pressure by yourself.

It's bloomin horrible walking into the unit and finding out there's something new to worry about, I used to dread it, if nothing had changed in the 8 hours I'd been gone I felt like I was having a good day, but it will get better, she will get stronger.

((((hugs to you))))) it's not a nice place to be right now.

Thanks, I know just what you mean about dreading walking in and finding out there is something else to worry about. We had a few good days last week and finally thought we had turned a corner, then today it feels like we are right back at the beginning again.

I will talk to my husband tonight, he is so much more positive than me, I just don't want to bring him down.

Thanks for all the posts so far, it does help me in a small way to read them.

youngie

janine don't bottle up your feelings talk to your husband,he probably realises how much stress you are under but doesn't want to say too much incase he makes you feel worse but don't shut him out.Remember your body is also under a lot of strain hormones all over the place talk to your doctor tell him how you really feel he is there to help you take care hun my thoughts are with you and your family

sukysue

Look I dunno if this is your first baby but from the little I know even if you do suffer with pre eclampsia in second and third pregnancy it is supposed to be not as bad as the first time. Also drs all have differing opinions and I would just wait a bit and see what transpires he she or it by the sounds of it thats how damn insensitive they sound may just be wrong. I hope you and your baby will be well again soon . Tell your family please they would be devastated if they knew you were keeping how you are feeling from them ....you know the old saying ... a trouble shared is a trouble halved...Good luck my dear I am sure you will all be fine and bringing home the baby very soon, many hugs from alll of us here I am sure x.

CH27

No advice but just wanted to send you hugs & strength xx

Mimi09

Hi,
my thoughts are with you. Its a horrendous time for you, which you have no control over and everything is uncertain. Try to look after yourself , maybe keep a diary to work through your thoughts. Our DD was in SCBU for a long time at the beginning of her life (not a premmie) . I was expressing / feeding round, whilst staying with her round the clock and ended up an exhausted emotional wreck. Whilst its impossible to do, try to take things as they come, she will progress and develop at her own rate.

Please don't take the drs advice as 100% at this stage, I've learnt that they really do have wildly differing opinions, in our case much was guesswork (and wrong) and alot is a waiting game to see how she does. xxx

flutterby_lil

Just wanted to send love and hugs to you and your family. I can imagine it is such a rollercoster and you just want your babe at home in your arms. I bet it is devestating. You sound to be doing such a fantastic job.

Is there a support group that the hospital can put you in touch with to speak to other families in the same situation?

I bet having another baby is the last thing on your mind right now. Is it your first?

All pregnancies are different. Do you know the reason (I know you mentioned pre eclampsia) for the emergency section? Have you been told anything?

My friend had her baby at 23 weeks in July and was not tod not to have anymore children so was just wondering the reason.

Chin up, talk to your family, I am sure they will be there and feel good to help you.

x

carolwat

Jannine I dont know what area you are from but if its Cumbria id happily help you out a little. I had my boys at 28 wks too and I know just what that rollercoaster is like. I know its all very daunting at the moment but these prem babies are tough cookies. You say the hospital who would operate are 2 hours away, have you asked about a family room there where you could stay whilst she is in their care. We stayed in hospital as we were out of area and it was much much easier than staying at home and being only 10 mins away from the hospital when we came back to the local hospital. It probably sounds like it would be harder but it isnt. As for the time being, you must tell your husband and your family and friends how youre feeling and accept any help offered. People can make up a couple of extra plates of dinner, I found this the most helpful thing as that last thing you feel like doing after being at hospital all day is cooking and with you expressing you need to eat properly. Is your daughter being tube fed? If so she will be on the tiniest amount, she may still even be on TPN. If this is the case how much milk have you got stored and are you freezing it all. I was given little bottles which were frozen in hospital and home and clearly dated. If you have plenty it might be a little easier on you to just let the milk dry up then you havnt got the pressure of expressing aswell. I expressed for about 3 months and had loads stored by the time my milk dried up. I was devastated but the hospital made me realise that with the amounts stored and the amount my son got fed it would last ages and that he had had the most beneficial start with my milk anyway. Just something to consider to reduce the pressure and as she is so small and early she wouldnt be able to breastfeed anyway as she hasnt got the sucking ability nor the strength and energy to breastfeed.

You write down as much as you want, I know it helps just to get it out. Good luck. xxx