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Part One. Facebook Posts. Birth to Diagnosis.

Updated: Mar 10, 2020

This blog post includes the Facebook updates from the day of Alices birth on 15th July 2011, to the end of that year.

Looking back, it shows how all the signs were there right from the start. The excessive sleep, the vomiting, the hiccups, the gastric issues, the inability to smile or interact. All these things are classic signs of NKH.

What doesn’t translate from these posts was how utterly terrified and concerned I was, that I was crying every day as soon as my husband went to work, that I was googling her symptoms all day and that I had never felt so alone and isolated in all my life. Whilst it may look like I was laughing it off and doing nothing, I was constantly visiting doctors, calling helplines and pleading with my apparently highly experienced midwife to take me seriously. Before I had even left the hospital I had raised concerns with 6 people, including midwifes, nurses, anaesthetists and a paediatrician.

What these post do show is me trying to make light of the scariest time in my life, they show how the horror unfolded as she declined before my eyes. They document her eventual terminal diagnosis and how we dealt with it in the first few months. They show how I chose to portray it on Facebook and if you think anything on Facebook is a true reflection of real life then think again.

15th July 2011

Alice Charlotte Lucky Underwood was born on 15th July and weighed 7lb. Both Alice and Charlotte are doing really well.

18th July 2011

Back home with both my boys. Thank you to everyone who left messages, I will try to get around to replying to you all soon. 5 days in and Alice is yet to open her eyes, I think she is stoned from all my drugs! As for George, I think he is undecided at this stage.

19th July 2011

Hopes Alice wakes from her coma soon. I'd quite like to meet my baby.

20th July 2011

and in today’s news Alice is ...........sleeping. A 6 day nap is a bit extreme in my opinion.

21st July 2011

Happy 1 week birthday Alice. We celebrated by opening our eyes for a full 10 minutes this morning. She is now sleeping it off.

23rd July 2011

Has an angel for a baby (who is still asleep) and the devil incarnate for a toddler. To think I was worried about coping with a newborn again. Alice I can deal with, with my eyes shut,but George is fast driving me to being that horrid screaming, swearing, unhinged mother we all see and pray we never become.

30th July 2011

Well we are into week three and Alice has progressed from 24 hours sleep a day to a more respectable 22. Whilst this suits me down to the ground, the longer it goes on the less prepared I will be when it all goes to tits!

1st August 2011

While Alice continues to sleep 22 hours a day she is fast shaping up to be a surprisingly noisy little bugger. A whole night of listening to gurgling, burping, snoring, sneezing, farting, squealing, hiccups and the occasional random yelp through the monitor and I'm bloody exhausted. Alice however is well rested and sleeping off her breakfast.

2nd August 2011

Not sure what is funniest. George wrapping himself in a pink blanket and watching TV in Alices bassinet or the fact that he tried to use my breast pump on himself today!

5th August 2011

After a 23 day nap, Alice is awake and has decided to join the party. Wonder how long before I am wishing she was napping again?

7th August 2011

After previously announcing that Alice had awoken after a 23 day nap, it seems it was a false alarm. We are back to sleeping 22 hours a day. Apparently she was not too impressed with what she saw/heard etc and has returned to her hibernating state of semi consciousness.

11th August 2011

One tantrum in 5 days (George not me) now that I can cope with. It seems devil child is slowly returning my son to me. Sods law, Alice will now wake from her 4 week snooze and decide to kick off.

14th August 2011

Is amazed at just how much vomit one can get out of small baby. I have been up since 2am either cleaning up puke, feeding Alice, listening to George try to beat his way out his cot or being woken by Gregs phone at 4am and then dealing with a mammoth 2 hour hiccups session that clearly upset Sleeping Beauty. Its gonna be a loooong day.

15th August 2011

Whilst Alice continues to sleep like a student it seems she now regularly vomits in her bed just like one too.

19th August 2011

Am I the only one who wasn't aware its International Throw Up On The Carpet Day? Anyone else wanna join in, knock yourself out!

26th August 2011

Alice had her six week jabs, which apart from a minor squeak she slept through. Nurse told me she may be excessively sleepy for a while. Unless she slips into a coma I'm not sure how much more sleepy she can get. Broke her record with a full 24 nap yesterday only opening her mouth to feed and one eye when she pooed. I want her life.

28th August 2011

Has had better nights sleep. Husband snoring (after all the shit he gave me when pregnant for growling in my sleep!), George having nightmares, Alice decorating herself in vomit then deciding a 5.30am breakfast would be nice. If I didn't have to drive today (and look after my two lovely children of course) I could honestly start the day with a gin.

30th August 2011

When you have a child you are fairly confident that you have seen and smelt it all in the poo department. Then you have a second child and realise how wrong you are. All I'll say is a game of poo paintball was instigated by Alice and I lost.

2nd September 2011

Had my teeth whitened so can't eat or drink anything with colour for 48 hours. Hurrah for gin!!!

4th September 2011

Will be purchasing a canary today to go in Alices room to check for toxicity levels. I never want to walk into that again without pre-warning. In fact if I have lost all my hair and teeth by the end of the day I would not be surprised.

5th September 2011

Georges new best friend is a small yellow citrus fruit we have drawn a face on and named John Lemon. Sometimes he worries me and other days I love him for his oddness.

10th September 2011

Time for a lunch nap. Alice continues to remain in permanent hibernation, but George has decided sleep is no longer necessary after about 3am. Never thought it would be George who would break me when I had a new baby.

11th September 2011

So the doctor has concluded Alices refusal to wake up or produce a smile at 8 weeks is something that needs looking into. Fingers crossed the final diagnosis will confirm she is simply lazy with no sense of humor. OMG maybe I have given birth to a teenager.

13th September 2011

At one week off two years old George has FINALLY decided he cannot go through life only saying "Oh dear". Nothing for 6 months and today he pops up with "car" and "apple". Two bloody useless words naturally but its a start.

14th September 2011

7am second change of clothes. 7.20am sofa cushions in the wash for 3rd time this week. In order to save on future washing, bathing and general inconvenience I will only wear clothing the colour of regurgitated milk from now on and will be rubbing cheese behind my ears instead of perfume. Can we please just stop puking???

15th September 2011

Right thats it! Alice is being fed in the bath from now on. Sofa covers back on a full 2 hours and back in the wash again. I swear to god she brings up more than goes in. 2pm bath for the pair of us. Suspect the specialist appointment on Wednesday may go on for some time and I should pack a lunch.

16th September 2011

6am and the first vomit of the day. This time by Greg! All I need is the cat do its usual and reverse backwards off a fur ball and we have a full house. When did my weekends stop being about lie ins, down time and relaxing? Oh yeah about 2 years ago next Tuesday.

17th September 2011

I fucking love gin!

19th September 2011

Just asked George if I could have a kiss for the train set we bought him for his birthday. So he lay down across it and kissed the track.

21st September 2011

Has decided today is the day Alice smiles. Whether she likes it or not. I don't care if you find me unfunny young lady, we will be having a smile workshop today and I expect your full participation. Now if you could just bloody wake up we can get started.

22nd September 2011

Today is going to be a good day. Didn't get charged for two coffees this morning and Alice stayed awake (proper awake not "stoned awake") for an hour and a half. Whoo hooo. Smile Workshop may get rescheduled for this afternoon.

25th September 2011

George kissed a girl at daycare today. Before I know it he'll have someone knocked up!

29th September 2011

Sofa covered in toddler vomit, three hours sleep and an 11 week old to look after too. What an awesome day ahead. Least its sunny!

1st October 2011

Think I might sack Facebook off for a while. Time for a trial separation.

* This was the point it all came crashing down and I could no longer keep up the facade.

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