Lily-Mae is here!!!!!

Hi all well its been a long 3 weeks let me tell you. On Monday 25th feb i was having a lot of pains so went to delivery suite was kept in they settled over nite. Then on Tuesday morning i didnt feel at all right.. by lunch time i was having pains again id also spiked a couple of temps and they stopped nephdapine as they thought i might have an infection. all bloods came back but just at top end of normal. At 12-1pm i noticed my waters were a yelloy colour told them they doen exam said it was fine, i perosnally didnt think it was it spelt a bit off putting to say the least.

I asked about scbu and was assured their was a cot for Lily-Mae should she arrive. By 3pm my pains were quite uncomftable i had some painkillers and i was leaking huge amiunts of fluid and awaiting a scan. Then at 4pm after my 3rd bath as it was only thing that eased the pain i noticed some green slime on my pad and i told them striaght away, at this point i was really upset and crying as the situation was jsut getting worse and very much like when i had Ella Last April. I waited 3hrs to see a doctor which i was disgusted at not once did someone come and listen in or anything. Eventually my husband and sister in law demanded i be seen. Then my own consultant appeared she checked me over and said Lily-Mae would have to be delivered ASAP.

NEXT..... I was informed that scbu didnt want to take Lily as she was 2 days off 26wks. So i was sat for half an hour while they arranged transefere. At this point i was very distressed as u can only imagine and i had temp. So at 8pm off i went in ambulance to Blackburn as hour away from home. I got their at just gone 9om the done a quick exam and took swabs at this point my temp was 39.8 and i was shivering and frezzing cold i felt so ill. After the exam they exlained i had chromnioamnitis a sever infection of the womb and that Lily-Mae had infact pooed inside me, the took bloods and i was told my little girl was going to born.

I was in theata and the bloods came back and i was 4.5 temp now lay on the table and i was ment to be having a spinal but i was so ill they put me to sleep.

Lily-Mae came at 10.37pm @740g. I was informed after i woke that my bloods had come back in theata and CRP had gone from 15 to 188 in space off 4 hours. Iwas hooked up to all sorts and i had to ahve a classical cut c-section. i was really ill adn kept in delivery overnite. whilst on antibitics.

SO UPTO DATE UPDATE. TUESDAY 18TH MARCH 2008.

Lily has had a very hard 3 weeks. She had bactiral meningistis at brith, which made her speptic. she suffered a grade 4 IVH. Severe SBR levels. weight up adn down. she also has a huge PDA. PDA has been treated and it has closed by over half but not totally she failed extuabtion twice due to the PDA but after treatment she has now been on cpap for 8 days in air. She's been scanned twice aweek for her head as she's developing cysts were the damaged brain tissue is and is at risk of hydrocelpcus. she currently has 7 small cysts on right side of her brain.

Her weight has been up and down at its highest 780g and at its lowest 700g but she is on the rise, she had dropped to 725g adn yesterday she was back up to 761g. She cant be transefered back to blackpool til she's gaining good weight and off cpap for 3 hrs. She has manged time off for 35mins last nite but they wont push her. Her crp did creap back up over weekend and she had LP doen but nothing grew and CRP is normal again now. Thou she's still on antibitics till tomoro or fri they havnt desided yet.

She's in HDU now has been for 5 days. She's on full EBM feeds of 6ml per hour with fortifier. Here's some pics.

http://i30.tinypic.com/2m6spwk.jpg
Lily-Mae 20mins old

http://i31.tinypic.com/2vneuqd.jpg
day 2

http://i32.tinypic.com/n5sppx.jpg
My brother hand next to Lily-Mae on day 8

http://i27.tinypic.com/ff4jgw.jpg
day 13

http://i26.tinypic.com/2j1a93d.jpg
First cuddle at 16days old

http://i29.tinypic.com/29xx46v.jpg
Day 19 looking cute

http://i29.tinypic.com/10h5ax0.jpg
Off cpap on day 20 for 35mins.

http://i29.tinypic.com/v0xv.jpg
Lily-Mae 1st time in a vest on day 20. after going back on cpap.

What a touch little one you have there.

Im so sorry you had to go through all this, I really don't know what to say!

Just the best of luck to you all and congrats on your beautiful little girl.

xxx

She's beautiful!

I wish you all the very best of luck and strength. :hugs:

:hugs: She's very sweet. I really hope she continues to improve. :hugs:

All my prayers are with you and Lilly, she is so beautiful. congrats to you.

What a gorgeous little girl you have.

She is obviously a little fighter.

Congratulations :hugs::hugs::hugs::hugs:

ooooooooohhhhhhhhh she is soooooooo dinky. i would be so scared to touch her. get better soon lily-mae so you can go home with mummy. good luck hun.:hugs:

Congratulations on your lovely baby girl! xXx

Lily has had a very hard 3 weeks. She had bactiral meningistis at brith, which made her speptic. she suffered a grade 4 IVH. she also has a huge PDA. PDA has been treated and it has closed by over half but not totally she failed extuabtion twice due to the PDA but after treatment she has now been on cpap for 8 days in air. She's been scanned twice aweek for her head as she's developing cysts were the damaged brain tissue is and is at risk of hydrocelpcus. she currently has 7 small cysts on right side of her brain.


Hiya, she looks really beautiful, in fact just like Charlotte last July, so be positive, she will be home before you know it.

We know what you are going through as charlotte was born with fungal meningitis which infected her brain and she developed two clusters of Csyst's on the right side. She also had a large PDA and they wanted to operate but could not due to the meningitis. She was on strong antibiotics for 8 weeks before she was clear of it and then the PDA just closed of its own accord after 11/12 weeks.

She did develop Hydrocephalus (water on the brain) as a result, after coming home, and was rushed to London for an emergency CT scan as her head had become very swollen but it was not bad enough to warrant a shunt being inserted at that point , so the Doctors decided to monitor her and like over 50% of cases it just cleared itself up and she is now 8 months old and acting very healthy and very normal and is so far meeting all her milestones albeit a little late.

keep us updated

I cant begin to imagine how traumatic it all must have been for you having to transfer hospitals etc.

Congratulations all the same, such a little fighter. Wishing her all the strength in the world.

x

ah she is beautiful so pleased everything is ok and u and baby are doing well x

aww hun, i'm so sorry you've had to go through this, she is beautiful and she looks like a real fighter hun, you all in my thoughts

omg honey, shes soo beautiful, I wish you all the luck in the world with your gorgeous little girl

Congrats she is gorgeous.
Good luck for the future but by the looks of it your little girl is a fighter.

Congratulations for your little girl, I hope she gets better really soon

Congrats she's absolutely gorgeous!!!! :hugs: You'll be in my thoughts so everything goes well

Congrats on your little girl and I will keep my fingers crossed!

she is truely beautiful!

Friday 21st March 2008 UPDATE

Ok well Lily got weighed this morning andf she'd lost 5g so she's now sat at 805g. Fed up of being told different things at hopsital, 1 consultant says one thing and then the next says something totally different. Last friday she just had to be gaining weight over the week now she has to be 1kg again. so as it stands were still on cpap in air not coming off for anytime. and wont be till she's a kg. They hav uped her feeds so hopefully she'll gain some weight come mondays weigh day.

As you can tell im a little deflated at moment. Fed up off being told diff things. Also been told that now she would have to come off cpap for 4HOURS... NOT 2-3 as i was told last week. Jus feeling really annoyed. Cant even speak to LILY'S OWN CONSUTLANT FOR 10DAYS AS SHE'S OFF AT BURNLEY AT MOMENT.

So i'll shut up for now. and leave u all in peace with this lovely pic xxx

http://i28.tinypic.com/33to56q.jpg

http://i32.tinypic.com/k3oihc.jpg

she is adorable...

I wish you all the luck for the future hun.. keep pressing the doctors for answers and dont let them fob you off...

you're really strong to be going through all of this... your girl is gorgeous.

Take care hun

xxx

She is absolutely gorgeous hun x
Take care x

I hope everthing start to goes better really soon, She's so cute

UPDATE SAT 22ND MARCH 2008 @ 8PM

Well after a long afternoon we finally got a plan for Lily sorted with hosptail Lily is now coming off cpap for 1 hour twice aday as long as she cope which she did when she came off to day then on monday it will be doubled and then on wedn it'll b increased 2 3hrs and then on thrusday or friday she will be transfered back to blackpool as long as all is well. feel so much better just for ahving a plan. Her Hb has dropped down to 9 so she's having some blood tonite as well which im sure will make her feel even better.

http://i28.tinypic.com/2s7v1fs.jpg

She's such a sweetie :)

Pleased you feel a bit happier now that theres a plan in place for her :)

xxx

Congrtulation on the birth of lily, she is beautiful. xxx

In the NICU Im at they do blood gases every 12 hours to see if they are giving the baby enough or too little oxygen. Do they do that there? Im just curious because in the 2 months Ive been at the NICU , Ive never seen them take the baby off the CPAP a few hours a day

Lily had a blood gas done on saturday which was showed her ph at 7.37 which is best she had so on that ground thats when they introced the weaning of 2x 1hour periods off aday.

Some place's wean off pressure not on time off. Lily hasnt had another gas done since then as she has given them no reason to say that she cant cope if however she started to play up whilst off or in the hour after being off then they would repeat her blood gas. She's only on twice weekly fbc and u and e's. She's been on cpap now for 2 wks, well actaully it was bypap for first 2 days so she's been on normal cpap for 12days now.but she's very stable and they wont bleed her unless they feel she is stuggling.

You only do a gas if u intend to change somehting or if u have recently changed somehting so thier no point in babies like Ella.

Hope that hellps. Ive had 4nicu babies before and allmine have been weaned on time off, first they comeoff for an hour then its doubled then eventually they end up on for 6 off for 6 and then on in days off in night till time on cpap is can be stopped. Lily is'nt being weaned to come off as they expect her to need it for another 3-4weeks she is being weaned mearly to manage transfere to our local hosptial, she has to be able to come off for 2.5hrs. When she has been transfered they wont continue to increase time off as it was just for transefer so it will stay same for a while whilst she grows xx

aawww hunni congrates firstly and good luck she looks like a fighter xxxx

gosh so tiny! Like a perfect little doll.
How may weeks was she when born? Hope all is going well.

Wow. How did I miss this post?

Congratulations on your little girl. I hope she is doing well! :hugs:

Lily is so sweet and what a fighter she is. I will keep her in my prayer .

How is she doing hun?

xxx

Congratulations on your little girl, I wish you all the luck in the world and I hope she will be home soon.
Luv Cheryl xxx

Congratulations on your tiny bundle of love!!!
Shes gorgeous....

Great name BTW, my little girl is called Lily-May:baby:

OMG my baby girl has been in air all night. Gosh she's doing so well at the moment she just needs to grow. It amazes me cos she nearly 33wks gestation now and doing so well. To look at her you would never know how bad her brain damage is ect... but i suppose thats a good thing it means if nothing else i can really enjoy her as a baby with-out worry that people are staring at her...

That was one of the hardest parts with Tj was that cos his head was misshapen and he had cuts from opps people would stare he became the HAT BOY lol.

If she manages of her 02 which so far so good only thing left for her now is to grow and learn to feed, she holding her temp well at moment but theY would like her to be 3lb+ to go in cot. It madness we could have her home in around 4 weeks if she carry's on.

Cant belive she's 7wks old today its gone so fast xx

http://i25.tinypic.com/2gw5e3d.jpg
OMG HOW CUTE CAN A BABY BE XXXX

http://i31.tinypic.com/2a85jbn.jpg
IS IT BIRD IS IT A PLANE NO ITS MY BLOODY BOOBS LOL:) THE ALL IMPORTANT 1ST BREASTFEED ;)

http://i26.tinypic.com/zkfk2c.jpg
Me and Lily-Mae xxx

hiya ive just read through this whole thread you lo sees like such a fighter! its good to read that shes improving :-)

good luck

Great news :)

xxx

Glad things are going well.

I'm glad she's doing well

I've just read this whole thread, total inspiration.

My little boy was born at 28 weeks and is now a strapping 2 year old :)

I hope your beautiful little girl continues to make good progress and that you have her home very soon :hugs: