more photos!

not the most flattering of pics but these show Hallie's pws clearly

big bro hitching a lift in Hallie's pram

jj

trip to the supermarket

"I don't want to go back to sleep"

you can see Hallie's tongue and gus on this pic - both of which I feel are large

Hallie's first visit to the seaside, and dip in the sea! aged 4 months

Hallie's new chair :o)

big week ahead of us

Since I last posted, things seem to have moved forwards with Hallie's hospital appointments.  On Wednesday 3rd October she is going to see the laser specialist at Leeds General Infirmary to discuss treatment and hopefully put some sort of plan in place for her first laser treatment.  I need to put together a list of questions, there's so much I want to know!  Friday 5th October will be a difficult day for Hallie (and mummy and daddy) as this is when she is having her MRI scan on her brain to check for stains - clusters of blood vessels touching the brain which can lead to seizures.  I am no expert and I find all this very confusing myself so feel free to comment and correct anything I get wrong!

Hallie went into hospital last week for a sleep study to monitor her saturation levels (oxygen levels in blood).  Not a nice experience for myself, Hallie on the other hand seemed indifferent, I don't think she cares where she is as long as she is with her mummy :o)  Six beds in a bay, each sick child with a parent = 12, yes 12 bodies in a small bay!  To say it was hot would be an understatement - all the children were naked with just pants or nappies on, including Hallie.  The parents and staff were sweating too!  I felt so claustrophobic in there, especially as I was surrounded by poorly children crying and wailing in pain and discomfort, It was quite unbearable.  Hallie fed and went straight to sleep at 7pm, was hooked up to the monitor and checked on every three hours for her obs.  I thought her stats had remained quite high (in the 90s) but the next morning the respiratory consultant came to let me know that the pattern on the trace showed there could be some kind of blockage which was causing Hallie's oxygen saturation levels to dip every few minutes - not dangerously - but enough to cause her concern.  She arranged for the ENT consultant to visit Hallie in hospital that day.  He came, stared at her for a while, watching her large tongue (another concern) and the way she was breathing.  He asked my permission to take a photo on his mobile phone and send it to his colleague in the US (the speed at which we can communicate these days comes in very handy when trying to make a diagnosis!)

To cut a very long story (and long sweaty wait in hospital) short, the ENT consultant wants to perform an endoscopy on Hallie to see if there is any kind of blockage in her airways causing her saturation levels to drop - one suggestion was that it may be her large tongue causing the problem.  The respiratory consultant came to see me (looking very concerned) and said she had been chatting to the dermatologist who initially saw Hallie and he was also very worried and wanted to discuss Hallie with his friends at Great Ormond Street as if Hallie had a vascular malformation (birthmark) on her tongue which was making it swollen and large, it would be something for the specialists at GOSH to look at and treat - I'm guessing because it will cause complications and be difficult to treat.  We were sent home that evening none the wiser as to what was going to happen.

I got a phone call the next morning from Dr Jay (respiratory consultant) and she confirmed they had decided to do the MRI scan not only on Hallie's brain but on her throat and chest, to see the exact construction of her tongue and throat and check for abnormalities.  While she is under general anaesthetic they will do the endoscopy as well and take her bloods to test.  After these investigations are complete they will then be in a better position to decide whether she needs urgent referral down to GOSH.

So, big week ahead of us - I'm trying not to think about it - writing it all down on this blog then pushing it to the back of my mind until Friday.  Hallie is as ever smiling and playing most of the day, hitting her toys and grabbing them now.  She has also started chatting to me (this started last week in hospital, she could obviously tell I was bored and needed cheering up!) she makes the most beautiful sounds when she gurgles and smiles at me.  Oh and her weight seems to be picking up - she has put on nearly a pound in the last 10 days! x

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In hospital for saturation levels monitoring

Hallie went to see a consultant in respiratory medicine last week.  She was referred by our GP due to concerns that the port wine stain covers the whole of her neck and part of her chest and this can sometimes affect the heart apparently.  The consultant was a very kind warm young woman, different to most consultants, and tried to reassure me that Hallie would be okay and she would get all the treatments/appointments she needed without delay.  She sent Hallie for a chest x-ray - Hallie was a very good girl and stayed still for it!

Hallie also has to stay the night in hospital tomorrow so her oxygen saturation levels can be monitored to make sure her breathing is okay.  Then, she is having her bloods and urine taken - they are being thorough, mainly due to her slow weight gain I think.

Hallie was weighed last week (aged 18 weeks) and weighed 9lb 14oz - I was pretty shocked, disappointed and worried, I felt disappointed that I hadn't managed to make her bigger with my milk and worried that it might be something serious linked to her PWS.  She was born on the 50th centile and is now on the 2nd so has dropped significantly.  I have asked the health visitor to refer her to a dietician so fingers crossed this is not a big problem and something that can be fixed with a bit of special fatty formula - she has been referred to ENT to investigate her large tongue and gums and her congestion problem she has had since 2 weeks old which could be making it more difficult for her to breathe resulting in her using all her calories up breathing rather than growing.

Anyway, I'll stop there as I didn't want this blog to be all doom and gloom!!  I shall post some cute pics of my beautiful Hallie instead x

 2 days old

 first bath at home

 daddy cuddle

 hallie aged 5 weeks

 bath time with her big bros

 O-lay!

 little ballerina xxx

just chillin

gummy grin

Hallie is 19 weeks old on Tuesday 25th September.  She is a very smiley little girl.  I can't help thinking every time she beams up at me from her moses basket that her pleasant nature and sociable personality will help her considerably when she is old enough to be aware of her port wine stain.  I can see already that Hallie, as well as being very sociable and quick to throw me a gummy grin, is very alert and aware of her surroundings.  She looks at everything around her with interest and focuses on people's faces and her toys, she hits her toys and tries to grab hold of them too - this reassures me that she doesn't appear to have any obvious developmental delays.  I constantly watch her and analyse her every move as we are still not certain that she does not have Sturge Weber Syndrome.

When I researched port wine stains and Sturge Weber Syndrome in my hospital bed shortly after having Hallie, I came across a mountain of information, most of which scared the hell out of me, on the symptoms a baby can have when they are born with a port wine stain.  Seizures and Glaucoma were the two that stuck in my mind and "mental retardation" which I think affected me the most as I worried immediately what type of future my 4 day old baby daughter would have and how my relationship with my only daughter would manifest itself if she was severely mentally disabled.  I readily admit I have never experienced a relationship with a severely disabled child and it was all i could think about.  I had already thought in the first week of Hallie's life that I would home school her if she got bullied and I would do anything to protect her from harmful words and stares.  It took me a long while for this emotion to mellow and for me to start enjoying Hallie and forget about the possible problems she may have in the future.

Hallie was referred to the dermatologist and seen aged 7 days old.  The dermatologist and his colleagues looked very interested in Hallie's appearance and as she lay on the hospital bed naked with them all staring at her port wine stains I felt sick as I realised the seriousness of Hallie's condition and that it must be bad because they seemed so shocked and quiet.  The dermatologist subsequently referred Hallie onto the ophthalmologist for her eyes testing, the laser therapist in Leeds to discuss laser therapy (at my request) and the neurologist.  She has been seen by the "eye doctor" at 4 weeks old and her eyes are okay for now but she needs to be seen every 3 months (due again in October).

Hallie was seen by the neurologist aged 6 to 8 weeks old.  This appointment disturbed me somewhat as nothing really came of it.  I was told that there was not really much point in Hallie having an MRI scan to check for stains on the brain as even if we did find she had stains on the brain there wasn't anything we could do to cure her!  The consultant told me that mental disability and seizures usually came hand in hand and as it looked as though Hallie didn't have any mental development complications and she had not had a seizure aged 8 weeks old, she most probably wouldn't have any seizures at all.  At the time I didn't think much to this opinion but after thinking about it when I got home and being given opinions from other parents who had been through the diagnosis process of SWS with their babies, I changed my mind and requested that Hallie have an MRI scan under general anaesthetic.  I also requested that Hallie be referred to the Sturge Weber Clinic at Great Ormond Street Hospital in London - it is the only specialist clinic of its kind and I know that once Hallie has been seen in this clinic I will feel a bit more settled and confident about her health.  I found when chatting to the SWS foundation facebook group that the information we were provided with at the neurologist appointment was not accurate at all and children with SWS can have their first seizure any time in the first two years of their life and that the mental development is not always present with the seizures at all!!

It worries me that the medical profession, or majority of it, know nothing about SWS and it worries me even more that we do not know what is going on in our daughter's body, what the future holds for her and what we need to do to care for her.

Photos of Hallie as a small baby

Hallie's Port Wine Stain (PWS) covers three quarters of her face, her neck, her right arm and hand, part of her left thigh, her bottom and lower back.  It is spread sporadically over both sides of her body which is apparently unusual (say the Sheffield consultants who have seen her).

our baby daughter was born

Nearly 17 weeks ago (tomorrow) our first daughter (third baby) came into this world and surprised everyone, born very quickly, and painfully, a few days before my planned c-section!  I was 35 weeks and 2 days pregnant and had been suspecting my baby was coming early from the 31 week mark, going in and out of hospital, having steroid injections, contractions, having baby's heart monitored constantly, and with gestational diabetes, it was a tiring ordeal and I just wanted my baby out and safe so I could start enjoying her.  After having two sons, Isaac aged 4 and Seth aged 2, I was longing for our third to be a girl and the sonographer told us on our 20 week scan that it looked like we were having a little girl!  I didn't want to believe it and get my hopes up too much but  I started buying little pink things eventually, unable to resist the image of my baby girl wearing her tiny dresses and frilly skirts.

After a short labour on 15 May 2012, baby Halette Nicole came into the world cried briefly and went quiet.  She weighed 6lb 1oz, I was worried the staff hadn't noted this down as the labour was so quick and unexpected they didn't have my notes to hand!  I had to stay laid on the bed due to complications with the afterbirth.  I kept asking if she was okay and remember the nurses and midwives telling me she was having a lot of suctioning because she had lots of mucous in her throat but that she was fine and breathing well.  Eventually they brought Hallie over to say hello to me.  I noticed the dark purple patches on her face and neck and asked what it was.  The nurses told me, in a very casual manner, that she probably had congestion or it was a birthmark.  I was relieved as I thought she had been starved of oxygen which had made her go purple.

It wasn't until the next morning that the consultant neonatologist came to visit me in my room where I was staying with Hallie in a cot next to me and told me it was in fact a vascular birthmark - a Port Wine Stain.  This meant nothing to me at the time as I had never had any experience of birthmarks except for a little stork mark I had between my eyebrows which flared up and down when I cried or got hot and disappeared as a teenager.  It was after this I switched on my ipad and started my research.

This is my baby girl Halette Nicole Davidson. She was born in Jessops Hospital, Sheffield, South Yorkshire UK on 15 May 2012 weighing 6lb 1oz - she was 5 weeks early. Most of the time we call her Hallie for short.

Hallie was born with port wine stains covering the majority of her face and neck, her right arm, part of her left thigh, her bottom and lower back.

I am writing this blog to track the progress of hallie's development and treatment I'll try to make it fun too and post lots of photos of my beautiful Hallie :o)