Saturday, December 03, 2011

Not so much easy

You know how last week was easy?  This week - not so much!

Not disastrous.  Not terrible.  Not even bad.  But definitely not easy!

Sunday we got our morning's work done then spent the afternoon getting ready to head out to an evening church service....only to arrive and find out that church started at 5pm not 6pm and we were 1 hour and 10 minutes late.  Doh.

Monday we were home and flat out just doing the normal stuff.  Trying to climb Mount Fold-more, getting some school work done, pumping, meds, laundry, cleaning etc.

Tuesday we dropped the kids off with some dear friends for the day and took Kaylee into Launceston with us to try and sort something with Centrelink.  An exercise in smacking one's head against a brick wall.  We kept sending the place into a panic because Kaylee's feed pump kept alarming making the same noise as their duress alarms.  But we did end up with half the women in the office crowding around Kaylee's pram goo-ing at her.  Kaylee cracked a HUGE grin at a light fitting there.  The kids had a fabulous time with their Aunty Nola and Uncle Ced (their honorary extra grandparents) playing non-stop. Nola gave the kids stacks of books and movies that her grandchildren no longer use - not to mention a gorgeous doll house which I kind of love (I may have spent a little time playing with it today).  We didn't get home until well into the evening and it was late nights all around.

Wednesday we were in town once again for a weekly weigh and measure which went BRILLIANTLY.  Kaylee is now 3.6kg and is doing so well my paediatrician is happy to meet every two to three weeks rather than weekly!  He is very impressed with the improvement in the range of motion in Kaylee's knees and elbows.  We went to the library and ran a few errands then we went home.  Late.  Again.

Thursday I was looking forward to a quiet day where we would celebrate Billy's unbirthday (we have a special "half way" celebration between birthdays called an unbirthday - Billy turned five and a half) with cake and cuddles and get some practical things done around the house.  Unfortunately, things did not go to plan. We had a visitor for a few hours in the early afternoon and then Kaylee's tube blocked.  We loaded everyone up and headed into town to hospital.  Again.  Of course we got there after business hours when the radiographers had gone home so we needed to place a NG tube (into Kaylee's stomach) so we could get medicines and nutrition into Kaylee but we needed to monitor her continuously until we could place the NJ tube (into her intestine) the next day so Kaylee was admitted overnight.  And one very sad little boy had to put off his unbirthday cake until the next day.

Friday we spent nearly the whole day trying to get a new tube placed.  First simply FINDING one in the hospital was a bit of a feat.  NJ tubes in babies aren't very common in Launceston apparently.  I spent most of the day getting ahead on paperwork (or getting a little more toward treading water with paperwork!) and working to get Kaylee's tube placed.  We finally all got home about 7pm when I made spaghetti and we decorated a cake at the unbirthday boy's request.  It is safe to say the kids were wacky.  Mum disappearing into hospital with Kaylee brought a lot of big feelings that had been simmering to the surface so we had a little bit of emotional triage to do and chocolate cake was deemed necessary.

Today was like a drink of cool water.  Thank the Lord for Sabbath!  Guilt free I ignored the work and focussed on resting with my husband, my kids and my beautiful in-laws.  Poppy got to hold his little girl for the first time ever and lay eyes on her for the second time ever - the last time was just before she flew out to Melbourne for the first time. 

This week was full on and exhausting.  I miss the peace of weeks on end at HOME. I would love to spend a week just hanging out with my kids doing nothing but the ordinary.  Between having a large number of children and having an adorable tiny baby with a tube taped to her face, anonymity in public places is impossible.  I have had the "Oh, was she very prem?" conversation at least fifteen times this week, once at 4am with a nurse.  Not a horrible conversation, but every now and then I would like to go out and blend in rather than give spontaneous tutorials on CDLS, genetic syndromes, heart defects.  I get tired of saying "No, my daughter is not 'normal' and she is unlikely to be in this world as we know it.  But hey, normal is totally overrated."  Getting everyone in the car had been streamlined but now with various pumps and meds to be taken into consideration it is a bit logistically challenging.  It can take us a good couple of hours to get everything ready and everyone out the door now.  Even if we get this next week at home (which I am hoping we will for the most part) ordinary will take a little while to kick in as this week we were only home long enough to make messes, not clean them!  My house looks a little like someone picked it up and shook it.  At least three days of shovelling mess is needed.  


We had wonderful times at the library, read chapters of our read aloud, spent time with each other and people who we love, Kaylee made progress, Billy turned five and a half and the whole week has been dotted with beauty and love and comfort and wonderfulness amidst the crazy.  I think once you have had the PICU experience it changes your outlook completely.  For me any week where my kids and husband all breathed, had their heart beat, stayed the right colour and got nutrition into their bodies is pretty OK.  A week when we are all together is pretty terrific.  A week when a doctor looks at my baby and says "Wow, that's great!" is freaking brilliant.

This week was challenging, exhausting, full on; but it was also pretty brilliant.

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