It has been an absolute age since I've been on here and I do apologise fo that.

I have some good news finally that Evelyn Hope came home on 16th August after 76 days on the special care baby/neonatal unit. She left hospital weighing in at 5lb 5oz (if you remember she was only 1lb 14oz at birth on 3rd June.) At her last weigh in last week she was a very respectful 7lb 8oz (which may well have been her real birth weight had she not been 14 weeks early.)

In some respects I feel as though I haven't been able to communicate on here for some time as many of the threads on this website (apart from the premmie forum) I have been unable to relate to. Sometimes I've felt very isolated at times and there are many issues to deal with that full time parents will never have experienced. It has been a challenge and yet also the most happy yet stressfull time of my life.

Obviously we are elated to have her home, but the journey has not been without its problems. I have been an absolute nervous wreck especially after they had to resusitate Evelyn and rush hert back into intensive care after her first set of immunisations. That was so unexpected and ruined my first wedding anniversary to boot as I was so upset. Thankfully she is ok now, but I made sure she was under hospital observation for her second set of injections.The poor thing is also suffering with chronic reflux as a result of being born so small and early (26 +3)and is sick 20+ times a day.... After much ranting and raving on my part and now changing doctors surgery I finally have someone looking into the problem. Evelyn must rattle as she is on so many medications but I still cant believe she's here and perfect in every way. I'm now feeding her EBM & Aptamil easy digest. I tried so hard to get into breast feeding but she was so used to bottles after all that time in hospital that I was fighting a losing battle. At least I can hold my head high and say that she has had expressed breast milk from me for 16 weeks now... no easy task as it makes it twice the work to feed it through a bottle... but she's worth it. anyway this is starting to sound as though all I can do is moan so I'll log out now.... but I just wanted you to know that we are on the mend now.
It would be great to hear from you all again

I still can't figure out how to post pics in messages or add a photo to your name.... so any help would be great.
Well doine ladies and thanks for all your support x Marie;\)

thats great news hope she carrys on going from strenth to strenth

Hi
Great news that evelyn is finally home.
i think you should give yourself a pat on the back for managing to give her breast milk for so long. Mine always seemed to dry up with DS no 2 and DD. they all came home on nutriprem.
It must have been very scary for you when she was rushed back to ITU again. How was she with her second immunisations?
i know what you mean about feeling isolated. Luckily, the march 08 forum that i joined when i was pregnant with elise was really good as the mums were really understanding.
Have you joined the BLISS message boards? The mums on there are really great because they have been through it too and are so helpful. i would really recommend you join hun.
I hope that life settles down into a bit of normality for you now and that Evelyn gets stronger every day.
Take care
Maria xx

amazing ...im so glad u finally have her home with u and she sounds like a real little cracker ...u are doing fab feeding her yourself i will watch out for the posts from u and evelyn and hope she continues to get stronger xxx

Congratulations on getting Evelyn home. My girls were in SCBU for 5 weeks and that was hard enough so I can only imagine how hard 11 weeks must have been.
Well done on the EBM too We had the same problems with breastfeeding so I expressed for 10 weeks but found I had to give up as I just wasn't getting the time to express during the day.
Enjoy every minute of having your little lady home and adapting to being a mummy in your home environment. Every day at home makes the memory of SCBU a bit duller and less raw. Can't wait to see a pic xxx

congratulations hun getting her home so quickly must have been amazing , my little man was born 26+4 weeks and was in neonatal for 16 weeks and came home on oxygen so Evelyn has done fantastic and now u have ur little darling at home, xx

Glad she is home honey, hope things go from good to great for you and your family.xxx

Great news that Evelyn is home at last.

Please dont think your moaning, youv been through an extremely stressful time and coping with reflux is a nightmare too. Kenny puked from one feed to the next but thankfully he gained weight well and it didnt really bother him. My washing machine suffered badly though and was run ragged. Get lots of waterproof bibs (i needed 20 a day at his worst time), I also bought dish towels especially for him and used them when feeding, burping etc to clean it up and reduce the mess. Also had a throw for the sofa that was easily washed in the machine. We used Gaviscon in his bottles and cant say it helped that much but as he was healthy in every other way I didnt want him to take more medication. As soon as he was cruising around the furniture it started to get better and the doc did say that when he was walking it would improve. It was a long haul but it sorted itself. You will get into your own routine in dealing with her reflux.
For photos, upload to photobucket, facebook or similar site. Copy the picture name (usually ends URL i think). Paste in your BE post, highlight the picture details in the post then click IMG. Its been a while since I did it and took ages for me to work it out so hope im giving you the right advice.
Cant wait to see her new pictures.
xxx

Wow...what an incredible journey you have both had. So pleased to hear she is doing so well.

to post pics

first your pics have to be somewhere like facebook (set to share with everyone) or photobucket. Click on the photo and when the properties come up highlight and copy it to the clipboard.

Come on BE and open a message page. Click IMG (its below the subject heading in form controls... ) copy your stored info about the photo and then click on IMG again.....et viola!!!!

xx

I'm so pleased shes home! You have done so well to express for so long and should be so proud of yourself and of course Evelyn.
I hope that you are now able to put the traumas of scbu behind you and enjoy your wondeful little girl.
H.xxx

Hi Marie,

Sorry to barge in on your post, I have not been in this section before but saw your title and had to take a look. I'm so pleased to read a happy story although appreciate that you probably have lots of worry ahead.

My beautiful daughter was also born prematurely, at 24+1, weighing 1lb 7oz, but she sadly died after only a day in SCBU due to Group B Strep infection. It's lovely to hear a happier outcome to a premature arrival.

Enjoy every minute now that Evelyn is home and well done!

George35, x

[Modified by: George35 on October 01, 2009 01:19 PM]

Such great news that you have finally got Evelyn home! I have been following your story on here and in the Sept forum.
We also has similar BF issues, in that SKye just didn't have the reflex to latch on at 7 wks prem, so I went down the expressing and BF route for a while, and then purely expressing. I kept it up for 10 weeks, so you're doing amazingly to keep going so long, big pat on the back to you!
We also has severe relux probs with Skye being hospitalised on a coupe of occasions doe to the lack of feeds staying down and acid burn in her throat. She started on many diffetent meds, and now at 11 months uncorrected she is off them all, hurrah, weaning onto solids helped us no end!

Make sure you enjoy every minute cos they're grown up before too long xxx

Oh wow that is wonderful news you must be elated and totally shattered. I am 24 + 3 and I could not imagine givng birth in 2 weeks like you. You just are not prepared at all. Congrats to you and your family and your strength. Evelyn is one of our top 3 names too both OH and I love it and it goes so lovely with Hope which she has bundles of. Either Grace or Evelyn or both. All the best and relax and enjoy her N xx

congratulations
my daughter was also born at 26 weeks and weighed 1lb 15oz. she was in the nnu for 16 weeks and came home on oxygen so Evelyn is doing really well.
my daughter is now 2 and a half so if you have any questions please feel free to ask
Emily also had reflux. you could try gaviscon for infants. that seems to help
i know what you mean about the breastfeeding. i couldnt even try until Emily was 9 weeks old as she didnt have the sucking reflex and when she was being fed through the night by bottle in the nnu it just seemed easier to bottle feed. my BM started to dry up by 5 weeks but i was prescribed the anti-nausea drug domperidone which has lactation as a side effect and i was able to express for 6 months! it was hard work though.
wishing you all the best with your little one x

Thankyou all so much for your messages.
George35 I was very saddened to read about your loss, how awful for you.
Little one has been on gaviscon for nearly 2 weeks now and sometimes it seems to be working and other times she is so violently sick I wonder if its helping at all. On the whole though I do think it has helped with her pain/discomfort management of the reflux. As a parent it breaks your heart to see them suffering so. I have also been giving her ranitidine for the last week but have had to kick and scream at both my doctor and the childrens ward on several occassions before anything got done. I can't believe they wanted me to try a lactose free milk... and then add colief to it. (Colief removes the lactose.... but its lactose free already!) Needless to say I have made the execcutive decision to change doctor and surgery as I've had enough.
When my milk was drying up I went to my old doctor to ask for domperidone at the suggestion of the neonatal staff .... but was refused! Talk about add to the stress... just what you don't need and a wasted hours wait in the surgery. I have now stopped expressing 3 days ago... and despite a bit of engorgement I feel ok, a few twinges of guilt occassionally, but ok. Evelyn is now on a mix of aptamil and frozen EBM... enough EBM to last this week then she's on the formula 100%. I am feeling a lot more positive in myself on the whole and have made steps towards improving things for myself such as aiming to sell my work at a craft show for christmas (something I have only dreamt of for years, and I have signed up to be a parental rep for the neonatal unit for the black country - I figured theres a lot these units can learn from us.)
Hopefully you can see these photos... they are not the lastest ones but I hope to add more soon.
http://www.facebook.com/album.php?aid=81619&id=552448217&saved#/album.php?aid=81619&id=552448217

I hope you can see this one!

http://www.facebook.com/julie.a.booth?v=photos#/photo.php?pid=2422132&id=538648466

and this!
http://www.facebook.com/julie.a.booth?v=photos#/photo.php?pid=2324374&id=538648466

sorry double post!

[Modified by: mazza74 on October 01, 2009 11:01 PM]

that's ridiculous that the dr refused to give you the medication to help feed your daughter. with all you are going through? that makes me mad. dont feel guilty about stopping expressing. you have done so well and should feel proud that you did it for so long. it is just so exhausting when you have to bottle feed, then express, then wash up and sterilise and make up the next bottle. it really takes it out of you especially the night feeds. and during the day it will give you more time to spend with evelyn.
saw the pictures and she is gorgeous. some of the pics look just like Emily.
here is a pic of her at 2 days
http://www.facebook.com/profile.php?id=1183766035&v=photos&ref=profile#/photo.php?pid=30026857&id=1183766035
and at 2 years
http://www.facebook.com/album.php?page=2&aid=2029485&id=1183766035#/photo.php?pid=30699216&id=1183766035

glad you are feeling positive. when they are in the nnu you tend to take 1 day at a time. hopefully you can look to the future now

Evelyn is so big now, what a clever girl she is. Your right to change GP if your not happy and I hope your new one is more helpful.

LaurenM thats a fab photo of Emile.
xxx

[Modified by: denise007 on October 02, 2009 09:35 PM]