Ali

[Wobbles]

Hi Ali

Wondering how your little girl is doing?
Hopefully ok to ask

Just spotted the pic of Charlotte in you avatar - very cute

Hope your all well

 

[ALI]

Hi Wobbles ,

She is doing great, is very healthy and normal and we cannot believe how far she has come in the last 7 months , especially when I look back at the copy of her discharge summary and remember just how many issues she faced (see 01/11/2007 in her Diaries on www.charlottelow.com)

She had just about every problem a baby could face born at 24 weeks , and slowly but surely we are still crossing them off the list.

We have started weaning her a few weeks ago and she is enjoying the food. We bought a very good book "Annabel Karmel - Feeding your baby and Toddler. The complete cookbook which covers all 4 stages. We had to start weaning as she was having 700/800 ml of milk (APTAMIL) and was still not being satisfied.

We are continuing updating her photo's and Diaries on the website , if you interested in seeing pictures , which go back to the very beginning.January's photo's should be up shortly, we are behind as she keeps us busy.
She started smiling a few weeks ago which was great.

She is also doing her bit for helping raising awareness of premature births and hopefully the work of the NICU/SCBU units, there is a new premature baby Diary on Tesco's Supermarket Baby and Toddlers Club which is about Charlotte. Samantha writes a weekly diary which goes up on the site. The Editor saw her website and emailed us to ask if we would do a weekly diary.

It is quite incredible when I hold the very first ventilator cap she had, (glad we kept it) and realise just how incredibly tiny her head was. You soon forget that in the beginning your premmie was literally the size of your hand, and I don't have big hands.

She has beaten the "Aneamia of prematurity" , (countless blood transfusions were needed), PDA (heart),ROP Level 2(eyes), Brain Meningitis, RSV (immune system), and just recently had the all clear on both her Metabolic bone disease and water on the brain (Shunt operation not required as it is sorting iteslf out). She gets her hearing aids fitted tomorrow but Piglet Low is doing very well . There is a high risk of cerebral palsy due to the brain csysts but we will deal with that if and when it happens.

What really matters is that she is a bundle of joy and we love her to bits. I would rather have her as she is, with whatever issues she may face, than have had her not survive, and none of the Doctors thought she would survive the infection.

sorry woffled on a bit

Thanks for asking after her

Alasdair,Samantha and Charlotte.

 

[Wobbles]

Aww wow shes a little fighter.

I had not recently looked at the website but did just read your weaning entry before carrying on with the rest of your reply. I know all these milestones mean alot to us all but I bet half of them have made you & Samantha both cry in joy.

Ive just been looking at home pictures onwards WOW what a wonderful home coming for you all. Did you do this or family/friends? Pist love your floor lol - For some reason Dec pics page won't load for me so I will try again later! How tiny is she in her chair on her way home such a cutie.

I wish her health & happiness ... such a strong little girl - she will have both

 

[ALI]

Hi Wobbles,

The milestones become very important with a premmie, we get given dates etc but every baby is different and we ignore them now, she was 5/6 weeks late smiling but started a few weeks ago. The first time we saw a smile we stared at her with big grins on our faces, and there may have been the odd little tear. To all parents of premmies, just be Patient and Positive. It took 5 months for her eyes (ROP) to get the all clear, but they are perfect now.

It has taken 7 months but we have now near enough crossed all the issues off the list, just really the hearing. She has really come on leaps and bounds the last two months, is really curious,alert,started "talking to us as opposed to just crying" we are generally over the moon with the progress she has made. We are even having quite a struggle nappy changing now as she wriggles a lot and is really strong.

We got the homecoming the banner from an online site and had it up for a week to welcome her home. And thanks , whole downstairs is tiled , spanish effect i think.

She was 5 lb 5 oz when she came home in the car seat, so was not tiny to us and gets weighed Friday, we are hoping she will be about 10 1/2 lbs now.

 

[faith_may]

Hi Ali, I was going to send you a PM, but I will ask you here. Do you have any new picture (I'm sure you do), of you little girl to post, to see how she's doing now.

 

[ALI]

Hi Faith,

Thank you for showing an interest . We were not sure whether to put any more up but so many people have kindly asked after her that we are now going to continue the monthly photo's update at least until july. when she is a year old , as her story contiunes.

We will get the January photo section uploaded over the weekend, we are sorting out which ones to put up at the moment.I will update her diary when they are up.

Ali , Samantha, and charlotte

 

[ALI]

Hi Faith,

The January photo's of our little miracle 24 week baby have gone on her website tonight, she has also had latest weigh in by HV and has gone from her initial 1lb 5 oz back in July to now being a whopping 10 lb 13 oz.

She is 7 1/2 months old , really cute and still gets mistaken for a newborn baby but she is living proof premmies even nearly 16 weeks early are tough fighters and can amaze us all with what they can overcome.

We are so proud of her .

 

[Wobbles]

Hi Ali

Hope your are all well

Just came to have a peek at Charlottes website! WOW shes coming on loads. Just spotted the difference in her carseat pictures from her coming home to Feb 2008! Shes come on so much hasn't she - bless her & the most precious smile (March pictures).

How much does she weigh now?

Any update on your fundraising plans?

 

[TashaAndBump]

I was thinking about Charlotte earlier... I've been following her progress on her website. You have an amazing little baby there (sure you don't need me to tell you that!)

All the best to you and your family

 

[ALI]

Hi Wobbles and Tasha, thanks for your kind comments, Charlotte was weighed last Wednesday at 13 lbs 5 0z , so exactly 12 lbs bigger ! .

Our fundraising plans were put on hold as the couple we wanted to jointly organise it with went to Australia for a month, and have just come back. I rang them last night and we are going to meet up sometime in the next two weeks to decide what to do. They are the couple whose baby moved into the SCBU the day Charlotte came home ,and we happened to meet in a local pub !

My aim to do the sponsored sky diving has been dealt a blow,
as my partner has banned me from ever sky diving again. We will make a decision with the couple asap as I really want to get started on a sponsored event for our local NICU unit.

The employees at Samantha's firm are doing a sponsored walk for BLISS on
the 15th July, Charlotte's first Birthday. I Will let you know what event we will do in the next few weeks

ps We have some really cute photo's to add in her April section, she is doing really well. She has a hospital appointment with a hearing specialist later this week for more tests, she definitely has some level of hearing without her hearing aids in.

 

[TashaAndBump]

Ahh, fantastic news about Charlotte's weight and hearing

Why has Samantha banned you from skydiving?? lol It's nice of Samantha's colleague's to join in on the fundraising I really want to do some form of a fundraiser event to help the local SCBU where Anna was looked after when she was born, but haven't gotten around to any concrete planning yet - I have registered to run in the London Marathon 2009 for BLISS, though so hopefully I'll recover my fittness from pregnancy and birth and get through to doing it!

Can't wait to see the new piccies - when will they be up?

 

[ALI]

Hiya

We shall definitely sponsor you for the London Marathon next year, its not an easy thing to commit to. Samantha banned me from sky diving becuase there have been a couple of news reports of sky diving deaths due to parachutes failing to open. One was another brit who sky dived above the same lake I did in New Zealand a few years ago.

 

[ALI]

Hiya Tasha

we have just put her new photo's up. we will continue putting them up until July when we will finish updating the site . We wanted it to chart her first 12 months. the last photo's will be of her Holiday in Majorca June/July

 

[TashaAndBump]

Oh wow - will rush on over now to take a peek...

You must be so excited to be taking her on holiday with you - bet it doesn't seem that long ago that you daren't even think of taking her home, let alone to majorca!

Will miss the updates to her site, but big congrats on approaching her first birthday! I'm so happy things are going so well for you all - you've both (samantha and you) been so strong and Charlotte's being so well is your reward....

Your story has really touched me and was a great inspiration and reassurance when my daughter was in NICU... because I knew what small babies were capable of and that even when all odds seemed against you you never knew when things might start to look up... I'm even thinking of becoming a neonatal nurse now, too so that I can help look after babies like Charlotte when they really need it.

Best wishes to you and your family,

Take care x

 

[VanWest]

Tasha, I was just talking about going back to school to be a NICU nurse.

 

[TashaAndBump]

Good for you! I've had to think long and hard on whether I will be able to cope with the job emotionally when the LOs don't pull through, but I believe that somehow I will - and it will be so worthwhile.

 

[ALI]

Hi, it is great to think of you all training to be an NICU nurse , it will have highs and lows but it will have its rewarding times, and we are so grateful to the kind Nurses whom looked after Charlotte. She is seeing a physio at the moment as she is not sitting up, it could be linked to her brain meningitis or just the premmie but we continue to keep everything crossed.
One always has to remain positive .

all the best

ali

 

[TashaAndBump]

Good luck with the Physio. I really hope it's just a little slow development due to being born so early...

What's Charlotte's corrected age? When 'should' she have been sitting up by? Remember that every baby is different - My brother was walking by the time he was 8 months old, but my nephew (who was born overdue) wasn't even sitting up by himself until he was a little over 7 months old - now he's two and he's running around, talking, singing, playing at children's play areas, using the toilet, counting... everything you could hope for! I hope she starts to sit up soon for you...

All the best to you and Samantha

 

[ALI]

Hiya Tasha,

Thanks , we hope and beleive it is just slow developing , she has really come on in the last few months, we think her water on the brain held her back for a while until it sorted itself .

She is really alert and responsive and the docs say she is at the normal level for a term baby in that department.

She is about 6 months old (corrected age)

 

[Mamafy]

My son was born at 28 weeks and never sat up till he was 10-11 months, I'm sure your daughter will sit up soon