# My story so far



## Abby

Hi, I stumbled on this site by accident and was encouraged by the words of encouragement offered to members etc.

I had my baby girl, Nia, on 13 July 08, gestation 23 +6 weeks. She weighed in at 650grams and so far, she is proving to be a little fighter. She has had respiratory problems that are settling, anaemia, PDA, overcome group B strep, and today, we got the shattering news that she has a fungal infection (candida) in her blood. A scan is yet to be performed to determine the extent of the infection. 

My baby is very ill with the infection and the doctors are very concerned. The doctors at present are unaware of the outcome, however, they seem very concerned with the possible long term effects of this yeast infection ie mental ******ation. (if she survives) . I just want my baby to live as I love her so much already . We hope that she responds to the treatment. Naturally, we are very worried but we leave everything in the hands of God.

I thought I'd share this with you as i need an outlet before I go mad. I will keep you all posted. please keep your fingers crossed for me.

thanks 

Abby

London, UK


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## Rumpskin

Oh darling, I will pray that you little girl comes through this xxxx


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## Younglutonmum

Your little girl is in my thoughts

:hug:


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## Hollys_Twinny

I hope all works out for your little princess- im sure shes a fighter..! x


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## VanWest

First Congrats on the birth on your miracle. I know all to well how your feeling right now. Just try to think positive and be there for your little one. I strongly believe they know when you are there. My son had three scares of being septic, and I cried A LOT, and prayed A LOT. When Noah was born he was 1 lb 15 oz, and his lowest was 1lb 10oz, many times we thought we were going to loose him, Thankfully we didnt and he is home and doing well. I will pray for your little Nia. If you ever need anyone to talk to please PM me :hugs:


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## Samantha

Hi Abby,

I can understand exactly how you must be feeling. Our little baby Charlotte was born at 24 weeks in Portsmouth hospital last july and 1 week after her birth she was diagnosed with the same Candida fungal infection in her blood and her brain. We were devastated too. It sure is a long journey with these little ones with many ups and downs. 

Charlotte was put on a 6 week course of antiobiotics and she is still here to tell the tale! Charlotte beat the infection. Charlotte was left with fungal spores / lesions in her brain as a result of the infection. We were so terrified at the time as doctors said the same to us about worries for the future.

Anyway, Abby, I want to tell you its not the end of the world. Charlotte is now a very happy and content 1 year old. At present, there are no signs of a serious movement issue like cerebral palsy, and the doctors are very happy with her. She is alert and she communicates well. 

Please take a look at the website we set up for her www.charlottelow.com

It tells her story from the beginning and although right now you are rightly devastated and worried, I wanted to tell you not to give up hope. 

If you need anything at all then just let me know. 

Best wishes
Samantha, Alasdair & Charlotte
xx


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## Linzi

Thinking of you and your family 

xxx


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## Abby

Just to say thank you for all your words of encouragement. You are all so kind.


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## elles28

Thinking & praying for you :hugs:


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## liamnsean

Thinking and praying for your little one. I haven't had a preemie, but I WAS a preemie myself. Born nearly 3 months early so I have a special place in my heart for little preemies. I almost died multiple times and that was 36 years ago. I am happy to report that I made it through it all with no long term effects. I pray for the same for your little one. xx


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## Mamafy

Good luck abby, thinking of you all, My son was born at 28 weeks and had a septic infection too but pulled through..xx


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## xXx Vamp xXx

Sending you and your little sweetheart lots of love <3 :hug:


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## KarenLV

:hug::hugs:Hope your little fighter comes home soon!!!


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## missjess

Big big hugs, you'll be in my prayers. Be strong xxxx:hugs::hugs:


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## leedsforever

:hugs: praying for your little miracle baby hun!!


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## Mummy2Many

Big hugs to you and your precious little girl :hugs:

I am a mum to preemies, so I know how devastating it is to have to see your little one fighting so hard. My little girl born at 25 weeks just celebrated her second birthday yesterday and is perfect, beautiful, and really intelligent with no signs of any damage from being so early.

As hard as it is right now, your little girl is stronger than she looks and she can get through it. :hugs: I wish you all the best, and I hope you get to have your miracle home with you soon.


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## VanWest

How is your little girl doing? I keep checking the thread to see if there are any updates. Thinking of you both :hug:


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## mummymadness

Thinking of you and your little baby miracle . xx .


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## LaDY

Aww babe i promise i will be thinking about you and praying for you...please look after yourself xx


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## Baby-Love

Aww, sweetie... I am sure she'll be fine.. Just look at what she's fought through already. You have yourself a proper little miracle..and a stubborn one at that. She's lucky to have parent's who are as strong as you are. Keep your head up, hun..

All my thoughts are with you all.


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## biteable

Thinking of you and your precious l/o xx


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## Abby

Quick update....

Nia is still rather ill. However, the consultant has told us that the infection marker is going down. She is back on her feeds so we are keeping our fingers and toes crossed. ultimately, we are constantly praying to God. She is my little angel. I have waited 18 years for her so I am begging God to continually heal and strenghthen her. I want her home with me.

She is tiny but must be stronger than she looks!

THANK YOU ALL FOR ALL YOUR WELL WISHES.

Abby


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## Nicnac

Hey Abby,

Just found your thread and wanted to wish you and your family all the best. Fantastic news that her infection is dropping.

Sending you love and prayers that she keeps this fight up and you get to take her home really soon.

Big :hug:


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## Mamafy

Praying for you all...xxxx


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## Heather.78

thinking of you and your little girl:hug:


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## genkigemini

:hugs: I am praying for you, your OH and your little girl! :hugs:


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## chefamy1122

Thinking and praying for you and your family


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## Sarah+Ellen

Hi Abby,
Congratulations on the arrival of Nia, Ellen was born at 24 weeks exactly 2 1/2 years ago. She had a lot of the same problems as Nia including the sepsis. We were told it was touch and go but she is a lively little monkey now and while i know no 2 prems are the same, i wanted to let you know about is to give you hope. Ellen weighed just 560g at birth and dropped below 500g before picking back up again.

Its great news that the infection marker is coming down and if you ever want to chat - i am here.


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## doctordeesmrs

Abby you and your little girl are in my thoughts.xx


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## cheryl

You are in my thoughts hun, 
Luv Cheryl xxx


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## Stephanie16

I hope everything goes well for you and your Nia xx


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## Hoping

I really hope that your little miracle keeps fighting.
:hug:


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## xarlenex

Just found this thread, shes proven shes a fighter so far, lets hope things get better :hugs: Wish you and little Nia all the best xx


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## Abby

UPDATE:
Have not had a chance to get online for a while. Thanks for all your messages....
We are still fighting. Nia has overcome the first infection but caught a new one over the weekend. She is also now suffering from oedema.

This is surely some ride..

Abby


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## VanWest

It really is a scary one. When I was on it,all I did was cry and say how I wanted off of it. I hope she is doing better hon. x


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## charliebear

What a little fighter. :hugs: x


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## gemma24uk

hey there i really dont know how you must be feeling hunny, but my heart goes out to you and your family at what must be a very hard time, i said a little prayer for you all especially little nia may god put out his healing hands, good luck god bless xxx


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## bex

Keep fighting Nia.

Thinking of you xxx


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## embo216

Just sending you a hug hun. She sounds like a fighter, i have everything crossed for you. x


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## Abby

Thank you so much. The infection is shifting thank God but it is still a constant rollercoaster ride. Over the weekend Nia had reflux, choked on her milk, with some getting into her lungs. As a result, she collapsed and had to be resucitated. She made a full recovery from that. 

Faith and Positivity

Abby


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## Abby

Hello everyone


My beautiful baby Nia went to the angels on Wednesday evening, 27 August, 2008 after a very courageous 6 week fight.

As mentioned before, Nia was born at 23+6 weeks gestation weighing 650 grams. I went into labour very unexpectedly following a somewhat stressful pregnancy&#8230;with bleeding, numerous degenerating fibroids, and group B strep which the consultant thinks was responsible for the my baby&#8217;s premature arrival. 

The journey has been full of many ups and downs. It was a case of taking it day by day, sometimes, hour by hour. Going to the ICU is scary even if you have spoken to the nurse/Doctor an hour ago&#8230;you never know what to expect when you walk in those doors. My tummy was constantly in knots. This is a roller coaster that I would never wish on anyone. I have dreams of the sounds of the machines in the unit, also of the saturation levels etc

However, we were secretly hoping that she was going to make it. After all, she had fought of numerous infection including Candida sepsis and fungal meningitis&#8230;things had started to look promising, she was over 1kg and appeared to be going in the right direction. On the Tuesday before, she was taken out for a lovely 2 hour cuddle with me. Her vital signs were good, she was stable, staring at me with large loving eyes, and she was infection free it appeared. My heart melted and my mind started working overtime, thinking about all the love we were going to shower her with when she got home.

Until, on Wednesday morning, my baby fell ill and was diagnosed with Necrotising Enterocolitis (NEC). She had to have emergency surgery. It was basically an &#8216;open and close &#8216; operation as the surgeon concluded that the condition of her bowel/intestines were not compatible with life. My angel&#8217;s earth body was dying, her guts had died and the contents were coming out of her beautiful nose and mouth. There was nothing they could do to save her. To cut a long story short, we switched off the ventilator and I have now reached the bottom of the roller coaster and stopped there. I am paralysed.

I cannot comprehend what has happened. My heart has been smashed and right now I feel that I will never recover, ever&#8230;

My husband and I are DEVASTATED&#8230;we have so many questions&#8230;.could we have done more? Was I too old to carry a baby at 37? ( We had our first son 18 years ago when we were very young. Pregnancy was non eventful and my son was born at term weighing 9 IB 13. My son has been raised as an only child and is perfect, off to Uni soon. So, we decided to wait until we were financially secure, happy in our various careers, and ready before we planned a new pregnancy. We knew the exact date our angel was conceived (just one try&#8230;sorry too much info) .We where SO excited that she was coming. This was our dream baby. And this happens&#8230;&#8230;Can we EVER get over this? I even fear for my relationship as we are both so consumed with our own grief. I had never seen my husband cry until now. He can&#8217;t stop, nor can I&#8230;.nor can my son who I haven&#8217;t seen cry for years&#8230;&#8230;.

To detract slightly, I went see my GP today and he was v sorry but his comments were: &#8216;what did you really expect? Your baby was only 23+6 weeks. You&#8217;ll have another baby. Don&#8217;t worry.&#8217; I know he was being realistic, but I felt&#8230;don&#8217;t say that, my Nia was a person who lived for 6 weeks&#8230;&#8230;

My mind has gone to mush. More questions: how does one plan a baby&#8217;s funeral,?. Surely this should not be the order of events? Should be the other way round. Where do I get tiny baby clothes?, what do I dress her in?. I want her to look beautiful, what should the order of the day be? What can I put in the coffin? What happens to work as I am on maternity leave? When do I go back? What do I do with the cards and little gifts some hopeful friends and family have given me? Pictures etc etc ...enough, enough

Sorry, I am ranting a bit and I know that I am not the first and will not be the last to experience this. However, at present, I feel cheated. My prayers, and the prayers of MANY friends and family did not work. The conclusion for me is&#8230;God knows best. 

I must go now but sincerely thank you all for everything, for listening to me and responding to my thread&#8230;THANK YOU


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## Hevz

OMG....I'm so sorry babe.

Crying too much to type now, will pm you:hugs::hug:


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## Hevz

Ok...able to type again now.

The hospital will probably give you details of a specific funeral director that they use/recommend but you can use anyone you like obviously....as far as I know baby funerals are free of charge unless you want "extras" like upgraded coffin etc, we just had to buy the "plot" at the cemetary. Many SCBU's have a specific "baby garden" at the cemetary where a lot of the babies are buried or remains scattered or where families go to remember. We bought a plot and had our babies buried there but it's right near the baby garden which I thought was nice.

With my 24week old daughter Rachael, my mum's friend made the clothes for her but I don't doubt that nowadays you may be able to buy something appropriate off the net if you don't know anyone who could make an outfit for Nia. I bought a tiny bracelet and put a cross from a necklace on it and lay it on Rachael like a baby necklace. We also put pictures etc of us in the coffin as we did when we lost Thomas (at 34wks)....the 1st toy we bought for them also went in with a letter/poem that we had wrote.

I had lots of comments like "you can have another" or "everything happens for a reason"

WTF....I'm sure they'd think differently if it was their child they were burying:hissy:


Your maternity leave/pay, free prescriptions etc are still exactly the same as if Nia was still here babe.

I bought a beautiful pink gingham and a blue gingham box for my two angels "stuff", cards (congratulations and Sympathy) are in there along with photo's, baptism certificates, birth and death certificates and special clothes, hats, blankets that they used too. I take them out and have a cry every now and then, which feels good but they are very special keepsake boxes and I would highly recommend doing this. You could also put a letter in or a diary of how you feel:hugs:

I hope this has been useful, SANDS are a great organisation when you are ready. If I can help any further....now or down the line, do not hesitate to contact me babe:hug:Heather xxxxxxxxxxxxxxxxx


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## violet 73

im really sorry this has happened . violet xx :hug::hug:


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## Mummy2Many

Oh honey... I am so sorry. I just don't have the words.. my heart goes out to you. I cant stop crying. If you need someone to talk to who has been there, you can message me any time. :hugs::hugs: My thoughts are with you and your family, and I wish you the strength to get through this heartbreaking time.. :hug::hugs:


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## Sarah+Ellen

i am so sorry to hear this hun, sending you all our love.


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## bigbelly2

may the angels watch over you all always

h x


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## mumto3boys

My thoughts are with you all, R.I.P little one and look after Mummy and Daddy xx


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## cheryl

I am so sorry hun, My thoughts and prayers are with you.
Luv Cheryl xxx


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## Emsi76

I am SO sorry to hear this!!!

I hope and pray that you are as ok as you can be!

xxx


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## bambikate

Hi Abby, I'm so sorry for your loss :hug: x x


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## VanWest

Abby, Im so sorry for your loss. x :(


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## 1st_baby

IM so sorry for your loss hun ! I cried as i read the whole thread Nia was a fighter and she faught all she could bless her lil soul and may she rest in peace in the hands of god


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## LaDY

Im so so sorry hun...sending you and your family all my love xxx


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## Abby

Thanks everyone for your time and kind words. 

I'll be honest, its been a week and i still can't believe this has happened to me. Some days are bearable. Others are AWFUL. 

Its still so fresh and our angel's funeral is not for 10 days yet. Don't know how I can go through that. This feels to me at the moment, a dream......but a the worst dream fathomable for me. 

Abby


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## Mummy2Many

:hugs::hugs::hugs:

All our thoughts are with you and your family. It will be a long, hard road, but you will get through it, and it will get easier. Eventually. Find support from wherever you can, and don't ever be afraid to ask for help & support if you need it. We are all here for you in the very least. I know it's the worst nightmare you can ever imagine.. no-one should ever have to go through it, and it is so very unfair. But stay strong, just get through each day, and time is the only thing that will heal.. huge hugs to you and your family. xx


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## alphatee

so sorry u & ur family are in my thoughts xxx


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## Eoz

Oh my poor darling.I don't know where to start.Life is so shit at times.You and your family are in my thoughts and prayers.She'll be with all the other little angels looking down on you every day.Please try to stay strong.All the love in the world. Zoe xxxx


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## Hevz

Aww babe....I'm still here for you whenever you need me:hugs::hugs::hugs::hugs:


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## Heather.78

Im sorry to hear this hun she fought her hardest, you and hubby ake care of yourselves :hugs::hugs::hugs:


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## keldac

Yo know my angel also died aged 6 weeks of NEC too. I truly understand your pain. Sorry just isn't the right word
:hug:


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## princessellie

omg hunni i just dont know what to say, just wanted u to know im thinkin of u and ur family

big hugs

x


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