I miss you so much our darling baby girl.  You are always on my mind and there is always a huge Sadie-shaped hole in our family.  I wonder where you are and what life would be like if you had survived longer or if you had not had trisomy.  Its hard.  There are so many wonderful things in our lives(especially your wonderful little brother!) and I have met so many inspirational parents who have also lost their precious children.  Daddy and I try hard to make you proud and we are so glad we had ...
Continue reading ...

At 3am on 10/03/11 it will be 6 months since Sadie has been gone.  We miss her so very much and I know she knows that. I tell her every day that I love her and she is always on my mind.  Sadie is a very special part of our family and I cannot believe we have survived for 6 months without her.  We have great joy in our lives again with Sadie's beautiful brother Pat, but although we will enjoy every moment of our life with our darling, precious son, this takes away none of the sadness or loss w...
Continue reading ...

I am so pleased to announce that on 17/02/2011 Sadie became a big sister!  Patrick Richard Collins (Pat) was born at 9.35am weighing 6lb10.  He is absolutely gorgeous and has some of Sadie's chracteristics too.

We are delighted to be welcoming Pat into our family and feel very blessed to have another beautiful baby.  We know Sadie will be very proud and I have no doubt at all that she is watching over her little brother.

As we continue to learn to live without Sadie and to grieve for her, we ar...
Continue reading ...

Its hard to believe that nearly 4 weeks have gone by since Sadie died.  Drew and I are doing OK.  Some days are really tough but we seem to be coping well enough to put a brave face on things the majority of the time.  All the same, the grief catches up with us most days and we're just taking it as it comes as we need to face the pain in order to get through it and become strong again.

Sometimes its such a shock that Sadie is gone.  She was very poorly but we lost her very quickly in the end a...
Continue reading ...

What a week!  So much has happened over the past few days.  Sadie and I ended up back in Francis House after Sadie stopped feeding and was very unwell.  She was having frequent apneas (where she stops breathing and turns blue) and just didn't want any feed.  It meant getting medicine down her was impossible too, so she was really suffering.

We took Sadie back to Francis House on Sunday night and she was fitted with a nasal gastric tube (NGT).  She's being fed that way now as she is struggling ...
Continue reading ...

Sadie had a really tough week as she was quite poorly over the weekend and continued to have episodes ofprolonged distress where she cannot be consoled in any way and she gets to a level where it is clear she is in a lot of pain and discomfort.  Sadie is generally a very happy little girl so we know that for her to get to such a level of distress there must be a real reason.

After seeing Sadie's paedeatrician again on Tuesday it was agreed that she would benefit most from the help at the hospi...
Continue reading ...

Its been an awful week for our family. Sadie has been increasingly upset and distressed and spends the majority of her time unsettled, crying and often screaming for prolonged periods.  Looking back we have seen this build up over several weeks and its clear to see Sadie is in a lot of discomfort and pain.

We have seen and spoken with her GP and paedeatrician and Sadie now has some paracetamol that she takes in suppository form as she will not take oral medication.  Sadly this has not helped S...
Continue reading ...

Sadie's had a rough few days but seems to be a lot better. We noticed that Sadie was having frequent periods where she would become highly distressed without any warning or clear reason.  It is very hard to settle Sadie when she has these episodes and she gets very upset as if she is in real pain.

Sadie's GP came to see her and arranged for us to see her consultant paedeatrician at Macc hospital.  Sadie's had an x-ray and needs an ultrasound too to see what is what.  It is thought that it coul...
Continue reading ...

Sadie's been doing so well recently.  She's been gaining weight (11lb7 now) and she's been responding well to the physio.  Last week Lisa, Sadie's physiotherapist was very impressed with Sadie's progress.  She is able to spend time on her tummy now and turn her head more to her left.  She also amazed us when she reached out to touch a new toy and then push it away.  She did this several times with each arm so she is getting much more coordinated.  These actions sound so simple, but they are s...

Continue reading ...

Sadie's been doing very well recently and putting up with mummy being unable to get out much (I'm a bit unwell, so just resting until things get better) and bless her I think she's a little bit bored.

Luckily Drew has been taking Sadie for some much loved walks and her strolls around the garden.  She loves fresh air and being outdoors so long as she's well out of the sun's glare.

Sadie's been trying to grab toys and can easily get her hand into her mouth so her coordination is improving well an...
Continue reading ...

I thought I'd write a quick update whilst Sadie is chilling out and finally cooled down.  Its so hard keeping babies cool in warm weather.  I don't know how people go on in warmer climates.  The moment I pick Sadie up she's warm and sticky and she's not worn much but her nappy for the last few days.

This week we've been to visit Natalie and her youngest daughter Hetty.  Vicky and her youngest son William were over too and it was good to see Sadie nice and relaxed in the company of other childr...

Continue reading ...

Well its been quite a busy week for Sadie and next week is busy again.  Luckily she's in very good spirits and seems to be enjoying herself - lots of laughing, smiling and gurgling!

This week we've seen Sadie do a half roll (as already posted) and she now spends most of each morning thrashing about trying to roll over; so the determination is well and truly there and its only a matter of time - GO SADIE!!!

As you know, Sadie had her 6 months birthday on Wednedsay and she had a really good day. ...
Continue reading ...

Sadie is 6 months old today!!  I cannot believe where the time has gone!

If you've read my previous blogs, you'll know that this huge milestone is something that we were told we should never hope to see but we are so lucky that Sadie has immense strength and a love for life and she has fought so hard to be here with us today.  Edwards Syndrome affects around 1 in 8000 babies and most never make it to birth.  Those who do, sadly hardly ever make it through the first 2 weeks.  In fact one (very ...
Continue reading ...

Sadie and I are absolutely exhausted! I took Sadie for her first Hydrotherapy yesterday and it was a real experience for us both.  I found it tougher than I'd imagined.  I'd gone along feeling quite excited but as we arrived at the Park Lane School in Macclesfield (a superb facility!) I started to get a bit nervous.  Seeing the other children with disabilities at the school and taking in my surroundings really hit home to me that this is how things will be if we are lucky enough for Sadie to ...
Continue reading ...

A long night last night with Sadie wide awake and teething.  She's been teething on and off for a few weeks now and just wants to sit and chew our fingers.  Sadie spent last night with lots of cuddling and watching her disco lights.  In the end she had to come back in our room so I could get some sleep.  Joys of parenthood!  Thank goodness for coffee!

We had another physio session at home this morning and Lisa told me she can see improvements already from the exercises we do several times a da...
Continue reading ...

The appointment to check out the sleep system was great.  It's so much more than a sleep system and we had Sadie lying on her tummy then in a comfy seated position and various others.  She smiled and gurgled lots and then nodded off, so we think it was a hit!  She was exhausted by the end of the day.

Physio is great for Sadie and Lisa, her physiotherapist was impressed by how much improvement there has been in her hands.  Sadie's fists have tended to be clenched with a flattened thumb (typical...
Continue reading ...

Big day today... Drew, Sadie and I are off to Macc hospital to meet Sadie's physiotherapist, Lisa plus a rep from Leckey to discuss their Early Intervention sleep system (http://www.leckey.com/template.asp?pid=386&webArea=2).  Sadie has low tone, which means she can't support her head well and has not developed the strength other babies would normally have developed at 6 months.  She's unlikely to ever be able to sit up, but not moving about and lying with poor posture is likely to start caus...
Continue reading ...