Tuesday, November 17, 2009

Happy Half-Birthday, Owen!

Owen is SIX MONTHS OLD today!  So far to celebrate, he has cried a lot, vomited a lot, needed changing three times (it's 8am right now) and finally fallen asleep for his morning nap.  Later on I'm taking him for his six-month vaccinations at the doctor and possibly the H1N1 shot, too.

What a crappy way to celebrate your first half-birthday!  I think I'm going to buy him a little treat after our visit to the doctor to make up for it.  Or just half a treat.

Tina.

Monday, November 16, 2009

God in my life

I've been thinking really hard about my spiritual leanings recently, what with Owen's baptism next week and his blessing at Stan's Christening in January.  I haven't reached any conclusions yet, but I will say that my feelings towards God change on an hourly basis at the moment.


When Owen is clearly in pain and screaming so hard he makes me cry too, I shout at God.  I ask Him why he's chosen MY family to go through this; why Owen, why me?  It breaks my heart every single day to see my child live in such discomfort and to realise that he has known nothing else his entire, short, sweet life.  Why would God put such an awful disease on the planet, and why would He decide that Owen is one of the ones who should suffer?  I have taken to venting my frustrations out on Him because I find it a lot easier and safer than talking to Mike or anyone else.  After all, God doesn't really answer me back, and I know He'll forgive me if I say something I shouldn't.


But it's so hard to understand it sometimes.  It's just so damn hard to watch my little boy suffer so much and to not be able to control it.  I find myself looking at the children of friends and longing for their lives instead of our own.  That isn't right.  How can it be right to covert their lives; their children?  And it isn't even as though I want THEIR child - I just want MY child to have THEIR child's easy life.  I find it very, very hard to listen to people when they say, "Well yes, Little Susie spat up too", or, "Little Jimmy did XYZ today!"  So bleedin' what?!  My child is delayed developmentally because he has GERD and there's not a lick of a thing I can do about it.


Those jealous feelings lead me to believe that perhaps God isn't in control of my situation.  Perhaps He skipped this house.  Perhaps He meant to fix Owen's health issues but He got caught up in Darfur or Iraq, helping those mothers with their frail little ones instead.  I couldn't blame Him - they probably need Him more.


Which leads me to my other feelings about God.


I heard a lovely phrase the other day: "Special babies are given to special mothers".  I don't know whether this is true, but it's certainly nice to think it is.  Perhaps God does have a hand here.  Perhaps Owen was given to me because I am the one Mama in the whole wide world who is suited to exactly meet each and every one of his needs.  Maybe God thought that Owen is a strong enough baby to live like this and we are a strong enough family to cope with watching him struggle.  Maybe these problems had to be given to somebody and it was just a matter of choosing the strongest recipients.


I don't know.  In times of despair, I find all that very hard to believe.

Tina.

Saturday, November 14, 2009

Been busy...

I'm sorry I've been absent since before my baby's birth - I've understandably been very busy since then! I promise to fill in the gaps and keep up a bit more now! Watch this space.

Anthea

Sad news

http://www.guardian.co.uk/world/2009/nov/13/falluja-cancer-children-birth-defects?CMP=AFCYAH


This breaks my heart.

In a moment of rather sexist bitterness, I find myself thinking 'women create, men destroy'. Who fights and kills? Not women, not children, men. Who suffers? Mothers and babies. Yeah, I know, there are female soldiers and men too suffer and die in war, spare me the lecture. But soldiers choose to fight and know the risk to their own lives that they are taking. These mothers and babies did nothing whatsoever to inflict this on themselves.

Stuff like this makes me lose all faith in people.
 
Anthea

Saturday, November 7, 2009

Changing stations in public bathrooms

Does anyone else judge the quality of a shop or restaurant by the baby changing stations they provide? I do. The very worst culprits don't have anything at all in the men's room, and the very best have family cubicles (or even whole rooms) where you can use the loo yourself while keeping your child in sight.

 
My main gripes are when they put the nappy bin and the sink too far away from the pull-down unit, so unless you have extendable arms you have let go of your child to throw things away and/or wash your hands afterwards. It's especially annoying when you haven't brought in your sling or buggy and going to wash your hands means taking not only your hands, but also your eyes off your child. I know they have straps but they're often broken and don't get me started on how many units have run out of disposible liners. I now carry my own wipe-clean mat to lay underneath Owen because of this problem.



I was in a brand new Wal-Mart today and they not only had an entire room available for families (changing station, adult toilet and comfortable section for breastfeeding), but in the main women's room they also had a large space for changing nappies. The unit was ultra-modern and stocked with liners, there were two bins very close by, there were three hooks for you to hang your coat, handbag and diaper bag if you needed to and the sink was located right next to the unit. In fact, not only was there a separate sink for parents, but in the main row there were normal height sinks and two placed lower down for children and wheelchair access. Now THOSE are facilities!

 
Wal-Mart might be evil for a lot of reasons, but I cannot fault them on their parent and child-friendly loos. Ace.

Tina.

Thursday, November 5, 2009

Solids!

What an exciting day!  First of all, a driver came by this morning to collect Owen's feeding pump, which is such a huge psychological relief.  Having that thing on an IV pole in your living room just serves as a constant reminder that your-child-is-different, and I think our place looks a lot more "normal" now without it.

So on Monday the speech therapist told me it was okay to start thickening Owen's milk and giving it to him with a cup, but the promised Thick-It powder never materialised.  I had shown her the new Nutra semi-solid food Neocate has created and she seemed skeptical but on board, so I was going to wait to speak to our nurse about getting hold of some.  Then today she showed up to Owen's appointment with a can in hand!  The woman has mad skillz.  We had a really good meeting with her: I just love her and so does Owen.  Since he was discharged from the NICU she's been working with us and she's very calming, relaxing and yet efficient.  We usually get through Owen's business and then chinwag for a half hour - it's a lovely way to spend a potentially infuriating medical appointment.

Owen weighed 16lb 4oz naked, which is almost two pounds heavier than when she last saw him three weeks ago.  Because of this, she and I agreed that it's okay to start messing around with his feeds a little bit.  After she left I cracked open the Nutra can and mixed a single scoop with one ounce of his milk and spoon-fed my little boy.  It thickened it only a teeny tiny bit, but that's how I've been told to start things until Owen can cope better with oral feeds.  Well!  The boy LOVED IT!   He was surprised by the new taste but then he started smiling, kicking and smacking his little lips together and I reckon he managed about a quarter of an ounce by mouth.  This is mega-huge-awesome-fabulous-can't-believe-he-did-that news, because before this week he wouldn't tolerate any milk in his mouth at all.  Anyway, after all that excitement about the new sensation he was knackered and fell asleep, so I gave him the rest of his feed by tube.

I'm so proud of him.  I was a bit anxious about oral feedings but he was such a superstar.  He got so excited about the new taste that I'm really encouraged to keep going with him.  It's also reassuring to know that I was right.  I KNEW he should be starting solids, but I kept getting knocked back by the "specialists".  I should have just listened to my instincts.  Either that, or today was just the right day for Owen and being two weeks older has made a difference.  Either way, it doesn't matter.  We reached the first hurdle today and passed over it successfully.  Tomorrow it'll be the same routine: one ounce, one scoop, one feed per day; then I'll up the mixture to two scoops, one ounce and then again after two days to two feeds.  Eventually after about two or three weeks he'll have three feeds of full-thickness semi-solid food and two of normal milk.  After that, who knows?  Maybe some fish and chips...

Tina.

Monday, November 2, 2009

Right! Enough with all the grumbling!

It's time for something POSITIVE, I reckon!  Enough with all the grumbling and groaning: let's have some GOOD news for once.

1.  After my tirade last week I took Owen to his routine cardiologist appointment.  He was born with a heart murmur, which, when looked at on an ultrasound, was an 8mm hole in the 20mm wall between the top two chambers of the heart.  For those in the know, this hole is present in all foetuses as they do not require their lungs to oxygenate the blood, but it closes upon birth once babies start screaming their heads off and breathing independently.  Well, either because of Owen's crazy genes or because he was premature, his hole didn't close.  This meant his heart had to work a lot harder to both pump blood and to keep him oxygenated.  WELL!  Last Monday, creepy Dr. Thomas (lovely, efficient doctor but stands far too close to me for comfort) confirmed what Owen's paediatrician suspected: the hole has almost closed by itself!  This is truly remarkable.  You would expect to see the ratio between hole and wall stay the same (so if the wall grew to 40mm, the hole would be 16mm), but not actually get any bigger.  Owen's has done the complete opposite and closed to what the creepy doctor called "a slit".  This, my dear friends, means he doesn't have to have heart surgery.  Ah... what a happy, happy afternoon that was.

Also, we got the babysitting situation sorted because some remarkable friends who live hundreds of miles away saw how upset I was and took matters into their own hands.  What fabulous people.


2.  Today has already been a day for gettin' shit DONE.  So far, I've managed to feed, clothe and change Owen twice (in themselves quite a feat), call our medical supplies provider to cancel our next order, call another provider to set it up there instead (don't ask - insurance in this country is mind-boggling), call my therapist to make a few changes, call Stepping Stones for Owen's December appointment, call a new doctor for Mike because he's a lazy bum and hasn't done it (and that toe is now DISGUSTING and I can't bear looking at it any longer) and finally... eat lunch.  Productive, considering it's only 12.30pm and I'm still in my pyjamas.

3.  In other good news: We're looking at high chairs!  Whoop whoop.  This is good news because it means Owen's head control will soon be good enough to manage sitting in one, our speech therapist is on board with it, he's growing out of his bouncy chair AND I get to start him on solids.  Whoop whoop indeed!

4.  Halloween was fun.  Owen was a teddy bear, I wore purple and black bat deely boppers and Mike wore his hilarious spike hat.  It's a shame I'm too lazy to put pictures on here, but you can use your imagination.  Our neighbourhood holds trick or treating at a set time every year, so we had about a hundred small children banging on the door for three hours on Saturday afternoon, and then nothing for the rest of the weekend.  I think it's a fantastic way to go about it because there was a real sense of community and it had a total party atmosphere.  It was the first time I've really enjoyed Halloween and I'm sure it's down to both owning our pretty house and having Owen here.

5.  And lastly: Owen's hair is growing.  It's so cute!  He's a little blondie right now but I swear his eyebrows are turning ever so slightly ginger, like me.  His hair is long enough to put bubbles in and spike it up in the bath.  What a superstar.

Tina.