Thursday, 23 June 2011

Shropshire Star & Telford Journal

I'm delighted today.  We've been trying to gain some publicity for Chris's planned sponsored walk on 6th August (my birthday, all cards gratefully received!)  He will be walking 23 miles to represent the 23 days Adam spent in Neo Natal.  Today I'm delighted that three articles have been published: 

Shropshire Live:  http://www.shropshirelive.com/2011/06/23/shropshire-man-in-sponsored-walk-to-thank-hospital-for-saving-sons-life/ 
This on the front page of the Telford Journal: 

This was in the Shropshire Star:




Unfortunately, there were a couple of errors in The Star article, namely that Chris got ten years younger (not that he minded!) and they got Adam's illness wrong as he had Group B Strep with Meningitis which is actually a completely different infection to Meningitis on its own.  But despite this, it was a lovely big article so I won't hold it against them!  

Besides, the photographer was so incredibly patient because Adam had a screaming colic evening so he had to wait for close to an hour before Adam even calmed down enough to contemplate a photo and even then, I was patting his back out of sight to try and keep him calm.  Look closely at his eyes and you can see we had about one nanosecond in between screams so the slightly fixed grins on our faces are us saying, "Take the photo before he starts again!!!"  It was an experience...  :-)

The best part about all of this is that the response to this has been incredible.  Originally, Chris hoped we might raise around £200 while I hoped for £500.  But as it stands right now, in between donations given on Just Giving and other pledges various people have been able to raise for us or have offer to us, that we know of, we're already approaching £2,500!!!!!  We are truly overwhelmed by everyone's generosity and so grateful to be raising so much for the hospital.  Thank you to everyone who has donated and for anyone who still wishes to do so, please visit:  www.justgiving.com/walkingforadam

All money raised will be donated to the Neo Natal Unit of Royal Shrewsbury Hospital where they care for and treat premature and seriously ill babies.

Tuesday, 21 June 2011

Not A Day For Miracles

Well, however much I would have liked it to be, today wasn't a day for miracles - at least not big ones.  

Adam's hearing was tested very thoroughly again in three different ways and the result seems to be the same as the previous test.  Adam's ear is capable of hearing and gives clear responses to the OAE test however, there is still no response whatsoever in the form of brain waves or "startling" to noise.  The test reached 90dB and the noise was even annoying me from what I could hear spilling from the headphones but Adam just snored on with nothing more than an eye flicker from time to time as he enjoyed his dreams.  

The suspected/presumed diagnosis is therefore "dyssynchrony" which is in essence damage to his auditory nerves - his ear can hear but his auditory nerves cannot translate what the sound means and so what he hears isn't sound the way we hear it.  There will still be more tests to come but two tests with the same results a month apart is, for the moment, pretty clear.  The Sensory Inclusion teacher who comes to visit us has said there are some sound files on the net somewhere that give an idea of what he would actually hear but I need to ask him again for the address of where to find them.

So, tomorrow morning at 9am, we're going back to see the hearing consultant and I guess at that point we'll learn a little bit more about what's next - whether they're going to even attempt hearing aids or whether they'll start talking about cochlear implants.  I'm also now going to ask more about starting a signing class in September to see if we can learn BSL to help with Adam's language development.

So, unfortunately today wasn't a day for miracles...except for those ordinary ones that it would be so easy to take for granted because my son woke up today, he asked for food, he cried, he smiled, he chuckled, he kicked his legs and waved his arms.  He looked at me and he studied his fist quite intently as though it was an entirely new invention.  I must remember that all of those things are miracles.  For any parent, those things are miracles but in our child considering how very far he's come truly, waking up, smiling, crying and sleeping again are miracles.  If those are the ones I have to content myself with, then so be it.  It hurts and I'm sad but so be it.

Thanks be to God for the miracle that is my son's life.  We just might have to wait a bit longer for the hearing part and see what the NHS can do along those lines.

Thursday, 16 June 2011

"On The Neonatal Unit, Miracles Are Rare"

I'm in a reflective mood today for two reasons.  

First of all, on Tuesday we caught part of a program on BBC3 that featured the Neo Natal Unit in Liverpool and so we watched a number of parents walk through their own journey's by their babies incubator's and cots.  One of those journey's ended with the baby's death, another with severe brain damage and cerebral palsy, finally with a baby who had a very good outlook and seemed to be developing well.  I was in tears and my heart ached for those parents because we remember all too well what it was like to sit next to our son's incubator without knowing whether he would live or die and knowing that even if he did live, there was a strong likelihood of him having lifelong disabilities.  

Then there was one line spoken by the narrator that resonated with me:  "On the Neo Natal Unit, miracles are rare."  

I turned to Chris with a smile as we both acknowledged that while Neo Natal miracles are rare, we have one lying in his Moses-basket muttering to himself as he sleeps.  It does seem likely that Adam has been left with a lifelong disability as the illness appears to have taken his hearing, but as we know so well, we are truly blessed to have been able to bring him home at all.  I do believe this fact is a combination of exceptional medical science, dedication and skill on the part of the doctors and nurses.  I also believe this is a result of the many thousands of prayers that were being spoken for us and for Adam in those days as relatives, friends and even strangers prayed that his new life would be spared.

So that leads me to the other reason why I'm in a reflective mood today.  Next Tuesday, Adam has his next hearing test at the hospital.  The results of this test will either confirm the previous diagnosis of profound deafness or may show some change to question the first result.  We were told there was an outside chance that his hearing could correct itself through maturation of his ears and auditory nerves but this is a slight chance.  All this to say, I'm not sure how to approach this day, this hearing test, mentally and emotionally.

Chris believes the wisest course is the one he calls realism, where we go in expecting the diagnosis of profound deafness to be confirmed and if the result is any different then we can be pleasantly or even delightedly surprised.  Realism: "The attitude or practice of accepting a situation as it is and being prepared to deal with it accordingly" Dictionary.com 

I'm torn between acknowledging that this may well be the wisest course for the sake of sanity and also wanting to remember that Adam is already a miracle, the fact that he's alive is a miracle, the fact that he has no amputations is a miracle, the fact that he is not paralysed is a miracle, the fact that with the exception of his hearing, he seems developmentally normal for his age and this is a miracle...I could go on.  So is it un-realistic to be hoping for another miracle?  

Miracles are of course not realistic - that's the whole point.  "On the Neo Natal Unit, miracles are rare..."  But miracles are part of faith and as I'm a Christian, I do often turn to the Bible for wisdom, guidance and inspiration.  So the Bible says in Hebrews 1:1: "Now faith is the substance of things hoped for, the evidence of things not seen." (King James Version) or "Faith is the confidence that what we hope for will actually happen; it gives us assurance of things we cannot see." (New Living Translation)  'Evidence', 'assurance', or in yet another translation, 'conviction' of things we cannot see.

Faith is not wise, many people would in fact call it stupid - and have done.  Faith does not sit easily or rationally with realism.  But realism said that my baby would die.  Medical science had done everything they could for him and still it wasn't enough.  Realistic doctors kindly prepared us for the worst.  Realistic statistics told us that a baby who was that ill with an infection that serious was likely to die.  Realism: "The attitude or practice of accepting a situation as it is and being prepared to deal with it accordingly"  But faith, the 'confidence that what we hope for will actually happen' told me my baby would live - and he did.

You see, I had become a mother and mother's don't give up hope, even or especially when their babies are just a few days old.  Combine this with a Christian faith that indicated that miracles can and do happen and I was believing that the impossible would happen - and whether because of medical science or because of prayer or most likely a combination of the two - the impossible did happen.  So on that basis, is it unreasonable to hope for the impossible once again?

The fact remains that if Adam is confirmed as being profoundly deaf, then he will still be loved just as much as if he could hear.  We will do our best to meet any and all of his needs in any way we can with the support of the health and sensory inclusion services.  If he is deaf, this will not detract from any of the previous miracles or impossible outcomes that have already occurred.  But of course, I still hope the impossible may occur yet again.  It's entirely possible that in suggesting there is still hope for a change in his hearing that I am setting myself up for disappointment and hurt, yet is it not the way of faith to always 'hope for things unseen'?

I could go into this test with a realistic outlook and I could also go in with an attitude of faith and hope - regardless of the outcome, and regardless of the fact that I may be disappointed, I still prefer to live with faith than relying solely on realism.  Who knows, maybe the impossible could happen.  I'll be praying that this will be so - as a mother and a Christian, I can do no less. 

Saturday, 11 June 2011

I Can Wee Out of a Leg Hole!

Baby Games

4:15am I decided to start muttering, grumbling and rolling around in my moses basket. My Mummy being so kind transferred me to another room so I didn't wake up Daddy. In the time it took Mummy to remove my old nappy and turn to unfold my new nappy, the changing mat was suspiciously wet. I however had a most innocent look on my face. Baby 1, Mummy Nil.
Mummy wiped up the suspicious dampness and checked me closely while I muttered most innocently. Then she started to put the new nappy on me. Just as she was attempting to close the tapes, I achieved a new trick and wee'd out of a leg hole. Baby 2, Mummy Nil.

Mummy removed the now wet nappy and started to wipe me down. Each time she thought she'd cleaned me, she found a new damp bit. Finally when she was cleaning my neck, she gave up and made arrangements for a bath. Have I mentioned how much I adore baths? ::sigh:: Baby 2, Mummy 1.

Once I was nice and clean (and quiet) again, Mummy succeeded in putting a nappy on me, dressed me in some new clothes and wrapped me in a blanket to keep warm. I was wide awake and plotting my next move. Mummy looked at me, decided I was awake enough for breakfast so she went to make me a nice warm bottle. In the time it took her to do this, I went from wide awake to fast asleep. Baby 3, Mummy 1.

Mummy looked at the clock, it was only just 5am. So with a yawn, she pulled a duvet onto the couch and decided to curl up for a nap since I was safely snoring in my moses basket. Just as she started to drop off, I screeched causing her to jump a foot in the air - which from a lying down position is quite the feat. Well, I HAD dropped my dumbles. Baby 4, Mummy 1.

Mummy kindly reinserted my dumbles and as all was quiet on the Western front, decided to curl up again. It was now 5:30am. I allowed her to start to drift off again before I started kicking, crying, and being altogether noisy. Well I HAD dropped my dumbles again....Mummy was now wide awake and so this time I fell asleep properly. Baby game, set and match.
‎5:36am Mummy yawns...is it worth it? No probably not...
5:45am Mummy decides I'm fast asleep so its probably safe. 5:56am I wake up and announce I'm ready for my milk...
Later on... 
I remember that this morning, I have a chiropractor's appointment at 9:40am. I do not like this man. He pokes and prods me and I don't care that it's expensive or that it's good for me, he interrupts my naps. It's currently 8:30am and I begin muttering in my moses basket as I determine my game plan. I know Mummy is busy getting ready and is hoping I will stay asleep for just a little bit longer. So I shout to inform her that she is required to attend to my nappy. I know she hopes it will be a quick job but, as will come as no surprise to my loyal readers, it was green, sticky and NOT a quick job. Baby Rematch 1, Mummy Nil.

Mummy puts me back in my basket and makes a bottle hoping I will go to sleep while she gets us ready and that I will wait for milk until we are finished. I rumble her plan and instantly start shouting that I require my milk RIGHT NOW. The mere fact that I wasn't remotely hungry five minutes ago has absolutely no bearing on the situation. Baby 2, Mummy Nil.

Mummy sighs rather a lot but being the good Mummy that she is, she gets me ready and gives me some milk. I drink precisely one quarter of my bottle and start to fall asleep. Mummy breathes a sigh of relief as it is now 8:56am. Baby 2, Mummy 1.

I know she has relaxed too soon because at 8:58am a rather potent smell reaches Mummy's nose. She looks down as the smell gets worse and with a sigh transfers me to the changing mat once again. It is here that I reveal the extent of my deviousness. Mummy sees a suspicious greenish brown stain on the back of my clothes. She investigates further and discovers that the poo has squelched out of my nappy, all the way up my back, around my legs and just for good measure, even onto her top. Ahh, the sweet squelch of success. Mummy says some words I'm not supposed to know yet. Baby 3, Mummy 1.
Mummy attempts to clean me up. She really does try. She then realises this is a hopeless task and so she prepares my second bath of the morning. Ahhh. I hadn't quite bargained on this one. It is 9:07am as I enter the bath. Mummy is still saying words I'm not supposed to know yet. I still don't like baths but in the circumstances I'm willing to avoid shouting just so I can listen to Mummy's words. I still however, do not like baths. Baby 3, Mummy 2.
Mummy redresses me in some clean new clothes. She changes her clothes. She puts all of my clothes and hers into the washing machine. She packs all of my things for the chiropractors and we get out the door by 9:21am. Wow. Mummy moves fast. Baby 3, Mummy 3.

While sitting in the carseat and halfway into the car, I decide to spit my dumbles onto the driveway and I SCREECH because I have DROPPED my DUMBLES!!!! This CANNOT BE!!! Mummy puts me into the car and returns to the house to find a new dumbles. Baby 4, Mummy 3.

Mummy backs the car onto the road, she drives exactly a mile down the road and with four miles still to travel, I spit my new clean dumbles onto the floor of the car and begin to scream. It's a long four miles. Baby 5, Mummy 3.

Mummy perseveres. She is determined that I WILL go to the chiropractor and we WILL arrive on time. Through her magical Mummy powers, we arrive at the chiropractors at 9:39am. Wow. I'm impressed. Mummy is good. Baby 5, Mummy 4.

Mummy takes me into the chiropractors and despite all of my best efforts, he prods and pokes me anyway and I cannot nap. I am NOT impressed. The entire chiropractor's office, all of the staff and all the other patients KNOW I am NOT impressed.

Let's just call it a draw shall we?
 
 

Snoring and Sermons

I took the family to church this morning, Adam's first time. He was so impressed by the experience that he snored through the whole sermon - loudly! :-)  I'm confident he was thinking deep theological thoughts and reflecting on the spiritual dimensions of the experience!!

SPIT! I Want My Dumbles! SPIT!

Adam's diary: Just when Mummy thought I was asleep and it was ok to have lunch and send email, I foiled her plan with ten minutes of squeaks followed by half an hour of dummy games. (I want my dumbles! SPIT I want my dumbles! SPIT I want my dumbles! SPIT I want my dumbles! SPIT I want my dumbles!) The result: Adam 1, Mummy Nil.
Some time later...

Mummy responded with a masterful stroke. She decided that if I was awake enough for dummy games that I was awake enough for a bath. Bugger. The result: Adam 1, Mummy 1.

After the (wet) bath...

Mummy made the mistake of deciding I was ready for my lunch. I agreed to eat for a while to give her a false sense of security then I filled my nappy with spectacular audio and visual effects. The result: Adam 2, Mummy 1.

Then I fell asleep. The result: Adam 3, Mummy 1.

The baby game continues after my nap...

Friday, 10 June 2011

The Easter Sacrifice

As I sit awake, watching midnight approach and then pass while my son feeds and then slowly relaxes back into sleep again, it strikes me as strange that this first Easter on which I'm an Ordinand is the first Easter ever to have passed me by with no church attendance whatsoever. Yet it is also an Easter on which I have a far deeper understanding of the pain endured by the Father as He sent His Son away from Him and into the world knowing it would result in His death. Having come so close to my own son dying, I shudder away from the pain caused by this and the sacrifice and love for us that it demonstrated. Then also as it is now Easter Saturday, a day for celebrating new life and Baptismal vows, I celebrate the new life, almost lost, of my precious son and I say thank you - for his and His. A happy and blessed Easter to you all.

Casting Crowns

I've watched the video of "Praise You Through This Storm" by Casting Crowns over and over again during this painful journey of Adam's first weeks of life. Many times over playing this in my hospital room was the only thing even close to a prayer that I could muster and many tears were cried as I listened when I couldn't find any words to simply say, "help!" and "why?" These words helped keep me sane...
"I was sure by now, God you would have reached down and wiped our tears away, stepped in and saved the day but once again, I say  "amen""" and it's still raining. But as the thunder rolls, I barely hear you whisper through the rain,  "I'm with you". And as your mercy falls, I raise my hands and praise the God who gives and takes away. I'll praise you in this storm and I will lift my hands, for you are who you are no matter where I am. Every tear I cry, you hold in your hand, you never left my side and though my heart is torn, I will praise you in this storm."

I Am Not A Fan Of Baths

"I can confidently (and loudly) assert that having tried baths, I'm not a fan. Bubbles are a form of blackmail that is simply not helpful and does not improve the process one little bit. I'll not have one again thank you very much." Adam Cheshire
"I can also confidently (and loudly) assert that warm water is still wet. This, in a nutshell, is the main problem with the activity as far as I can see. It really should be discontinued as a wholly unsatisfactory experience." Adam Cheshire