So, after a very long stressful journey with twins we lost 1 baby girl when I delivered her at 20+6 days. The placenta remained intact and I was kept in hospital on bedrest ,
On the 22nd if march I had to be induced due to infection and our little girl Fallon Hope was born at 23+6 days.
She is on high flow ventilators and is up and down all the time. This is our first pregnancy.
I am expressing and the NICU freezes the milk for her.

I'm an emotional wreck at the moment and looking to chat with some ladies that know what I'm going through. How to cope. How to keep it together and how to have any hope when the outcome looks so so grim.

I don't belong in here but just wanted to say I'm so sorry to hear about your loss of Kloe. May little Fallon keep growing stronger!!

I don't belong here but couldnt leave without wishing you and your partner all the love and luck in the world. I hope and pray that Baby Fallon fights hard, and that you have the strength to see through the long days ahead xx

I don't belong in here but just want to add that my friends daughter was born between 23 and 24 weeks (can't remember the number of days 23+). She is now 8 and a beautiful girl. She does have eyesight issues (not blind but mainly in one eye, the other is okay with glasses). Apart from this healthy, happy and gorgeous. I do realise how very very lucky this girl is but just wanted to share with you.
Wishing your daughter all the best and strength for your journey.

Just wanted to give strength to your family and baby Fallon xx Keep fighting little one!

Hi frogneek
Congratulations on the birth of your beautiful Fallon Hope.
Yes I have spent some time in Nicu and yes its unbelievably tough.

First things first, You have done an awesome job to hang on 3 more weeks with Fallon & I am so sorry that Kloe couldn't stay. Being able to express is a huge commitment that will really help out, well done. I found it really hard to leave the hospital each day which was eased by getting to know the nurses, knowing they really don't mind if you call a 3am whilst expressing to get an update and getting them to help you do her cares.

Suggestions, lots of photos. Our nicu sold waterbased ink so we could do hand & foot prints. It's amazing how much they change in a short amount of time. If you have some-one reliable in your family, ask them if they can be a contact for you. Give them an update & ask friends and family to speak to them. the support of friends is great, but you may not always have an update to give every-one or be ready to.

My son's room-mate is celebrating his 1st birthday tomorrow after being born at 25 weeks. It does happen .

huge hugs,
Deanne x x

Please feel free to pm me if you like.

I don't really belong in here - but wanted to send big prayers to your beautiful daughter Fallon. I pray she gains strength and is able to get through each hurdle that she faces in the long next few months.

This is a great place for support and I'm sure many of the long time members will be able to help you better understand all the tests and problems you might/will face.

TASH

I don't belong heft but I worked with someone who's DS was born at 25 weeks, he spent a long time in NICU and had some gastro intestinal issues but is now fine (almost 2 years old). Best wishes with everything.

Hi frogneek,

I am so sorry for the loss of your daughter Kloe.

I have been through the NICU/SCN journey when my daughter was born at 27+4 weeks almost 10 years ago. She weighed 460g so it was a very hard and rough road for us.

All I can say is just take one step, one day, at a time. There will be good days and not so good days. Two steps forwards and three steps backwards.

Try keeping a journal. Somewhere to write down your feelings. Lean on your friends and family for support. And as I said above, just take one day at a time.

I am sending lots of strength and growing vibes to Fallon, and I hope that everything starts to look better soon.

Take care,
Lisa

hey frog,

just stopping by to let you know all of us ladies from your DIG are thinking of you.

I have no words really, but you, fallon and your family are in my thoughts and prayers at the moment.

Keep fighting little one, and take care of yourself too

Another who doesn't belong in here, but i just wanted to say your story has touched my heart and i am thinking about you. You are a very brave and strong person.......i hope she is ok......

Hi
1stly congratulations on Fallon's birth and on keeping her inside for those critical 3 weeks. And my deepest sympathies on the loss of Kloe.

DS was a 28+4 bub so I've done the NICU journey and its very tough. There is a world of difference between 23 and 28 weeks but i have some understanding. Your doing a wonderful job expressing and doing verything yoou can for Fallon.

I'll pm some links to prem sites.

Just wanted to say that you're awesome for expressing - it must be exhausting but you're doing so great keeping it up during such a stressful time.

A lot different situation, but I was born at 31 weeks (30+ years ago!!) and while I was in the unit, my mum expressed to feed me - she did it for weeks and people kept telling her to just do formula, (which she did for some top ups) but she said it was worth it to be able to feed normally when I was strong enough. It wasn't until I had my own baby and had trouble expressing that I realised how tough my mum did it when I was born early. So I just wanted to say I think you're doing an amazing job.

I'm another one who has no experience with a micro premie, however i wanted to send my love and support.

Congratulations on Fallon's arrival, and my sympathies for the loss of Kloe.

Wishing you all the best. I look forward to hearing updates on her progress.

Kirsten

No experience but I just wanted to send you my sympathies on the loss of Kloe and congratulations on Fallon's arrival.

Thinking of you all through this tough and heartbreaking journey. xx

I'm so sorry Kloe didn't make it I pray for strength for little Fallon, and strength for you and your family.

Sadly like Lisa above we can't say "we don't belong here" because sadly we do. We know exactly where you're at at present (minus the grieving for a lost bublet ) but just keep putting one foot in front of the other. Take solace in the fact that statistically girls do better, just a fact.

I had my girl at 26+0 so very different kettle of fish (830gm) but I do know that Mottilium were my best friend! Without those drugs no way my supply would have been there.....just no way.

PM me if you ever need a chat/whinge/cyber shoulder and I'll continue to cross my fingers for your popet. Update when you can k? x

Thank you all so much for your kind words and prayers. She is still fighting.
Fallon has another brain scan tommorow to check on things again which is so so stressfull. :-(

Expressing is going ok. Though I cry nearly everytime I do just wishing my little girls were in my arms instead.
Being that I had twins I have twice the milk so am very sore at the moment which doesn't make things any easier!

Fallons cot is actually playing up at the moment so they may have to swap her. In that case I have been told I may get to have her on my chest while they do it. The thought of that alone brings me to tears!
Every single hour is so critical at this point.

Will keep updated when I can,

Frogneek - My heart goes out to you! Congratulations on the birth of Kloe and Fallon. Sorry to hear that Kloe couldn't stay here with you and her sister. My prayers are with you and your precious Fallon. I hope that you get to have a cuddle soon.

Frog - you are doing all that you can right now and I hope you get that precious hold soon enough.

Frogneek - sent you a Pm which will hopefully help

Wishing you all the best and lots of strength.

I don't belong in here but wanted to offer you support. Wishing yo all the very best and I am sorry for your loss.

Take care.

I saw this in recent topics and had to add something.

Our dear friends had their little precious bundle at 23 weeks. It was touch and go for a long time but 16 years later she has grown into a bright and beautiful young lady - there is hope!

If postive thoughts can help a situation I am sending all of mine for a happy outcome for you.

Sorry about the loss of your Kloe.

Frogneek - Congratulations of the birth of your babies. I am so sorry for the loss of Kloe.

I'm another BBE mother, though my child was a bit bigger - Molly was born at 27 weeks weighing 810 grams.

It is definitely scary and stressful in NICU. I dealt with it by just taking minute by minute, hour by hour. That's all you can do. Congratulations on having so much milk. Expressing for your child is the best thing you can do now. It took me ages to get things sorted breastmilk wise, but from then it was easy. Just make sure you have an excellent hospital-grade pump.
Make sure you are assertive with the staff at the NICU and find out what the hospital can offer you. I was too meek and found out later lots of services I could have accessed.
Also keep a diary. I regret not doing so. I was too scared to write things down at the time.

Hope you get a hold of Fallon when they change her isolette. I held my daughter first at 13 days old. It was an awful experience really! Very scary! But also wonderful.

My best wishes to you and your family.

Another who doesn't "belong" here but is sending you lots of thoughts and hugs for your precious bundles.

Hi Frogneek,

I also don't belong here but just wanted to let you know the girls in the DIG are thinking of you. No words can comfort you on the loss of Khloe but I just wanted to let you know I am so sorry that she couldn't stay with you. Khloe will be watching over Fallon now.

I wish you all the very best with Fallon's journey to full strength. I hope you are able to hold your precious baby when they change cots. Keep up the fantastic work with the expressing of milk. You must be exhausted now but it is all worth it.

I will be thinking of you, Fallon and Khloe.

Rose

Saw this in recent topics and couldn't not reply.

I am so very sorry for the loss of Kloe...may she watch over you and her sister Fallon at this stressful time.

Fallon sounds like an amazing little fighter - and you sound like a remarkable mother. I'll be thinking of you both and praying hard that Fallon's fighting spirit continues.

xx

A quick update. Fallon had her brain scans yesterday but we haven't got results yet! I can hardly bare waiting. :-(

She come off high flow yesterday and is on sippv ventilation now. Her stats were all over the place yesterday because of the handling during the scan. It stresses her out alot being over stimulated.
She also has high blood sugar and trace amounts in her urine so there is a possibility they may have to start her on insulin.

She is off her dopamine which keeps their blood pressure up but she has been on and off that alot.
Fallons oxygen was on 29% on the ventilator last night which is up again too, she had been on "room air" at 21% but they had to bump it up again .

She isn't under blue lights anymore as her levels had gotten better.

So all in all it's steps forward on somethings and jumps backwards on others.

Thanks for updating - I hope the scan results get to you ASAP - must be torture waiting Hoping the steps forward way outweigh the steps back for Miss Fallon.

If you are in Brisbane and need a shoulder to cry on/someone to have coffee with, please feel free to PM me Sending love to your family.

Another one sending you strength as you and your family go through the NICU journey. I hope the results come back to you as quickly as possible and that little Fallon has some more stable days.

It really is a journey of taking it day by day and at times hour by hour and hope that each day Fallon grows stronger - I am sure that Kloe is looking down on her

Not sure where your beautiful Fallon is, but if in Melbourne and Monash and need anything, please let me know

Kerri

I just thought I would also mention that this group: http://www.heartfelt.org.au/ may be able to assist you.

I just came across this today. Frogneek, congratulations on the births of your daughters. I am so sorry for the loss of your precious Kloe.

I am the mum of a 27 weeker, so while not the same I have travelled the roller coaster ride that is the NICU journey. I hope that you hear about Fallon's brain scan soon. Have you asked her nurses or doctors about it? Sometimes when we weren't told the results of tests we were a bit pushy and asked, and a few times it was because the nurse had assumed that the nurse on the previous shift had told us, or that the doctors had already talked to us.

In reply to a question you asked in your first post



by taking it one day at a time. One foot in front of the other. And trying to find something positive each day, no matter how small it might be to any outsiders. A few hours of lowered oxygen, relatively stable stats when touched, tolerated feeds. And to keep a diary where you write these positives down. This way on a dark day you can look back and remind yourself of some of the better days.

I am in Sydney, if that is close to you please let me know if I can do anything.

Ros.

Hi Frog

Congratulations on the birth of your little girl Fallon.

Another one from your DIG just wanting to send you love & hope as you & your partner go on this journey with your precious daughter. We are all thinking of you.

I don't know really if you have much time for reading but thought I would post this link for you anyway. This is the blog written by a lady who was a member here (not sure if she still is?) & documents the journey of her daughter born at 23 weeks. I thought it may help in some way.

Niamh Annabelle Royle

All the best for the days ahead

Hi Frog, been keeping track of your journey so far and I have to say how proud I am of you for being so strong for Fallon. You are doing a fantastic job :)

Like pukky said, take it one hour at a time, one day at a time, one foot in front of the other and stay positive. Your daughter is doing so well and proving to be a tough little cookie. I really hope you get to hold her on your chest soon, I can't imagine how much that would mean to you :heart:

All the very best from everyone in your DIG hun
xxxxx
Amanda

Our little princess Fallon Hope was far too beautiful for this earth. 
Her sister needed her in heaven. We couldn't have one without the other.

She peacefully slipped away in our arms at 12.20 am this morning. due to cerebal ischemia, which is hemorage of the brain. Dr's had never seen anything like this in her gestation. Even if she had survived Fallon would not of had quality of life at all.

She fought so hard for her mummy and daddy , and beat the odds so we could meet her. Holding her while she passed to be with her sister is the hardest thing we have ever done and probably ever will do.
God is cruel, but Our girls were always meant to be as 2. Kloe & Fallon are watching over us now and will always be in our hearts, souls, minds and thoughts.

Again thank you all from the bottom of our hearts.
our precious angels that heaven wanted back, 

Kloe 1/3/2011 and Fallon Hope 22/3/2011-31/3/2011. 

"here too soon, gone too soon" xxxxxooooo

I am so deeply sorry for you and your DH. My heart goes out to you both.

Oh I am so, so sorry for your loss.

Big hugs to you and your family.

Oh gosh, i am so incredibly sorry.

My thoughts are with you and your family.

Kirsten

I'm so sorry. Thinking of you in this terrible time.

Lots n lots of hugs

I'm so terribly sorry OP. I can't imagine your grief. Just know that there are a whole heap of strangers out in the world who are thinking of you and your family now. I don't know why such terrible things happen to people but from reading other's posts, I know that you and your family will pull through this. Sending my best.

I am terribly sorry for the loss of your two gorgeous girls.

Thinking of you.

I am so sorry your precious daughters are now in Heaven.

RIP beautiful Kloe and Fallon Hope.

I know you must be heartbroken, I hope life i gentle with you and your husband.

Please take care of yourself.

Oh,Frog I am so sorry. Thinking of you

I am so, so sorry for the loss of your two precious girls. Thinking of you.

I too am so sorry for the loss of your two beautiful girls.

I feel for you and your family, very sorry about the loss of your girls

How terribly heartbreaking :(

Sending you and your DH all the strength you need to get through this difficult time.

xx

I'm so sorry. Thinking of you and your husband as you get through this devastating time xx

I am sos so sorry for your families loss.
Now you have 2 gaurdian angels watching over you ......