Thursday, May 26, 2011

12 Month Stats

Percentiles from

Weight: 8.84kgs  19lbs 7.6oz   (7.5%)
Height: 77cm    30.3 inches   (66.1%)
Height for Weight:  3.6%
Head Circumference: 41.5cm   16.3 inches   (0.0%)

Thursday, May 19, 2011

Well, we've made it!

Everyone says the first year is the hardest.  And it's over, we got through it.  Older, wiser, and not without some significant battle scars, but we're here.

This time last year I was about to go into labour.  Not many things compare to the excitement and anticipation of meeting your baby.  I crave that feeling actually, and can't wait to experience it again. For most people, it goes off without a hitch and they get to blissfully hold their new baby at the end of it.  Some people have complications during labour of course, but most times, even then, the baby comes out perfectly ok.  Ours didn't.  Not a single day has passed in the last 12 months where I have not tearfully thought about seeing my newborn baby in hospital covered in tubes and wires, fighting for his life.  Not knowing if he was going to live or die.  Not being able to kiss and cuddle your baby like a Mother instinctively wants to.  I truly believe you never, ever get over the trauma of that experience.  The day my son was born was the best, and THE WORST day of my life.   That is a difficult thing, when you want so much to celebrate the amazing life before you but at the same time you reflect on all of the very very hard things you have had to endure.
When we got Joshua's MRI results, they told us they didn't know what the future held for him, but that it probably wasn't good.  That we just had to wait and see.  I thought that after a year had passed, we'd have a better idea of how things were going.  But the truth is, we don't.  We still have to wait and see.  It is obvious that Joshua has not been severely affected by HIE, but that is about all we know.  He has obvious challenges...  a small head...  developmental delays...  we still have no idea what the future holds for him.  What we do know is that he is a wonderfully happy, smiley boy that brings joy to everyone around him, that he is a fighter and never gives up, and that he is going to make the best of the life that has been given to him, whatever that may be.

And tomorrow, I am going to try not to cry.  I am going to try and put a big smile on my face and eat cake with my amazing baby boy.


Tuesday, May 10, 2011

The latest on Baby Group

Yesterday we went to baby group after having a 5 week break.  The first week was due to the school holidays, the following two weeks were due to a bit of disorganisation about who was going to run it, and the last two weeks were due to public holidays.  They like to alternate each term between having a Physiotherapist run it, or an Occupational Therapist run it.  This term, we have two new therapists running it.  By new, I mean they are new to running baby group, but they are not new to the Children's Development Team as I have met one of them before.  One is the OT and the other is a Behavioural Therapist.  I am kind of confused about that, because all I have heard about Behavioural Therapists is that they help with behaviour modification..  like naughty kids.  LOL  I googled to see if I could find out more information, but that is what I got from google as well!  So I am not sure how that really fits in with Baby Group...  I am going to ask though!  It was the Behavioural Therapist that spent the most time with Josh yesterday, and while these two therapists are nice enough, I am just not really feeling it like I did with the PT and the other OT, Melissa.  I am not even sure why Melissa can't do it again.  She came into Baby Group to see me and is going to come next week to do a formal OT assessment for Joshua.  Her and the PT Tahnee want to get a good report done up for the next time we go back to the Paeds in July.  It is hard to explain, but Melissa and Tahnee "get it".  The two that were there yesterday, I feel like they don't "get it".  Maybe it is just because they don't really know Joshua that well, (or me!) but for example, Joshua started Army crawling a week ago, which really, is a huge flippin' deal.  And they thought it was good when I told them, but not with enough enthusiasm for my liking.  LOL  When Melissa came in on the other hand, and saw him do it, she was obviously thrilled and excited, and was making positive projections about him crawling.  I told her about the skateboard and she thought it was fantastic and said (again) how I should be a therapist.  I told her I couldn't take credit for the idea as it was suggested to me by someone else!  When I told this other lady about the skateboard, she just looked at me like I was a freak.  So, I don't know...  Maybe they will grow on me in time, but in any case, due to all the mucking about, we only have 5 weeks with them and then next term it should be back to being run by the PT, which better be Tahnee!  I will post again next week after the assessment!      

Friday, May 6, 2011

Hospital Records

I have now received all of the records that I requested in order to send to Dr Hill.  
The last lot to arrive, was naturally the most important lot, which was everything from Royal Darwin Hospital.  I've emailed the Doctor to tell him everything that I have been sent and so now I am just waiting for him to let me know how to proceed from here.  I am thinking we will probably have to scan everything for him, as he prefers electronic copies.  

Most of the Joshua stuff doesn't mean much to me.  I'd have to do a lot of googling to decipher all of the abbreviations I think, and I am not sure that would be worth my time.  (For instance, there is an "Investigation Flow Chart" which looks to me to be blood analysis type stuff, but I am not going to worry about googling each thing to find out what it is and whether or not the numbers they have written there were good, bad etc)  It would take forever and probably is inconsequential to me.  
It is good however to have written down exactly the issues that he had.  I know they told me things at the time, because a lot of it is a memory refresher "Oh, that is what they were talking about".  Most of what they said went in, but wasn't really processed by me at the time, and for some reason, I wasn't hardcore with the google while he was in hospital, and the googling that I did do was very non-specific and didn't turn up anything of value.  It wasn't until a couple of months later that I really started to get a handle on finding more information.  
So, now I know that Joshua's basic problems were:  
  • Respiratory Distress
  • Hypoglycaemia
  • Seizures
  • High Lactate
  • Low Magnesium
  • More Seizures
  • Coagulopathy  (According to Dr Google, this is a problem with blood clotting.  This is the first I have heard of him having this)
  • Low Calcium
  • More Low Calcium
  • More Seizures
It also lists what was done to manage these.  (Drugs, Drugs, Drugs, and Supplements)  So this is nice, in the sense that I am no longer in the dark about all the things that were being dripped and injected into my baby.  Honestly, at the time, I didn't care, I just trusted they were doing what was needed to make him better, but in thinking about things later, I did wonder about everything.  So there it all is.

I am surprised though, that the stuff that really effects me emotionally is reading about stuff that has been written about me.  I can look at Joshua's records in a "clinical" way, but when I look at mine it gives me a lump in my throat and tears to my eyes.  
I will start with mentioning the comment written by the doctor at RDH.  She wrote that I was "reluctant to co-operate".  This doesn't make me upset, it makes me annoyed, but actually kind of proud of myself at the same time.  Because I am twisted like that.  Somebody told me that that is a doctors way of writing "The patient required informed consent before agreeing"  Hahaha.  True.  I did question everything, I also agreed to everything, except for placing a fetal scalp monitor.  And I don't feel bad about that, it wouldn't have changed a thing, apart from putting a hole in his head.  (and giving them more paper records to say he was doing poorly, which we didn't really need, we just needed him out!)  Everything else however, they did get "consent" for.  (I say consent like that, because it was more like "We can't do it unless you say Yes, and you don't have a choice so just say Yes").  Joshua's birthday is 2 weeks from today, and yes, I am still bitter about my birth experience.  I know it was basically all necessary, for Joshua's sake, but I still struggle with the fact that I basically ended up in the very situation that I hoped to avoid by planning a homebirth.  Many times, being in a hospital results in unnecessary intervention and ruins what could have been a beautiful birth.  For us, the intervention WAS necessary and yet it doesn't make the pill any easier for me to swallow.  For me, the birth was nothing less than traumatic and I think I'd have an easier time making peace with that, if it wasn't for that fact that worst was still to come and I now cannot separate my birth experience from everything that happened afterwards.  I hate feeling angry and jealous towards those that do get the sort of birth I wanted, but I just can't help but feel how unfair it is, and how I got "ripped off".  When I was pregnant, I participated in natural birth forums like the Australian one "Joyous Birth", and then after Joshua was born.  I couldn't go back.  I'm getting better though.  I've recently been able to wander into the Natural Birth/Home Birthing group on Fertility Friend         and be sort of ok.  It is hard to feel like you can make a valid contribution to a conversation about "natural birth" though, when mine was far from natural.  Anyway...  getting rather off topic here...
Back to my records...
Some comments from the Nurses that made me teary:
"Karissa teary this shift as baby unwell in SCN"  (stating the obvious really, but makes teary again anyway)
"Patient slept all night when checked.  Patient left undisturbed in view of baby's condition"  I still can't believe they thought I slept all night.  I also can't believe that I managed to go all night without going to the toilet.  That in itself is a miracle.  The only reason I slept at ALL was just for being exhausted after being awake for 24 hours and having a baby, but it was very broken (by nurses shining torches at me while I was "sleeping") and by the fact that every time I woke up I would think about the injustice of laying there in a hospital bed while my baby was in intensive care and not with me, but never mind.
"Offered Boostrix to Karissa, declined at this stage as very emotional and stressed over baby's condition- will consider if she wants it at a later stage and go to community care if she does.  Baby remains in SCN ventilated and on phenobarbitone for seizures.  Karissa and partner Rod very upset after returning from SCN this morning"  Well for a start, I declined the Whooping Cough vaccine because I didn't want it, not because I was stressed over my baby's condition.  But I think that makes them feel better to think that.  LOL  Just like I declined the Hepatitis B at Birth for Joshua and they wrote in his discharge papers that I was going to get it done at the GP.  Uh no....  But I may have just nodded in agreeance to get the frick out of that place.  As for the rest, well yeah, who wouldn't be upset.  I am still upset!  LOL
Also interesting to see what my blood pressure readings were.  They were pretty crappy actually.  Which doesn't shock me one bit under the circumstances!  Apparently they weren't worried about it though.  I've taken it myself a few times since having him and its been super duper awesome.  So awesome I have wanted to call everyone I know and update my facebook status about it....   But...  I refrained.  

Oh, I guess the last thing that I should mention in this super long blog post, is that amongst everything, they also sent me the results for the CT scan that was done when Joshua was 5 months old.  The purpose of the scan was to rule out craniosynostosis, but they also had a look at his brain.  This is what the results say:

There is a sizeable area of encephalomacia in the right parietal region as well as atrophy/hypoplasia in the frontoparietal regions of both cerebral hemispheres.  Small foci of calcification, some with linear appearances are noted near the grey-white junctions of both cerebral hemispheres.  The extra-axial CSF spaces are slightly prominent generally which is consistent with reduced brain growth in the setting of a small head.  The findings are most likely the result of perinatal intracranial infection.  Ventricular calibre and position are normal for age.  The posterior fossa structures appear normal.  There is no evidence of craniosynostosis.  

The biggest "what the" here for me was the mention of infection.  This could just be a generalisation though, as when you look up microcephaly, it often mentions infection being a likely cause.  However, a little disturbing to me was the fact that googling "perinatal intracranial infection" turned up a bunch of articles saying that it is often mistaken for Hypoxic Ischaemic Encephalopathy.  Not exactly reassuring.  
Otherwise, these results basically say that he has "softness or degeneration" of brain tissue.  That the front of his head is wasting away or underdeveloped (I am thinking this is why his forehead is so tiny..) And what I would basically describe as scar tissue in the brain.  
It is not exactly a glowing report is it.  No wonder the Doctor said that he is doing so well for having a head so small!  
There has been some discussion recently among my "HIE circles" about the value of follow up brain imaging.  Mainly in reference to MRI, but I think CT can come under this as well.  Apparently in some cases it might be necessary, though I am still not really clear how or why.  In the majority of cases though, I don't think it is.  I mean for example, the above results have only served the purpose of saying again how totally F-ed up his brain is.  I am at a place now where I am not bothered by it.  If I would have read this when he was 5 months old though, it would have stressed me out immensely.  I know now however, that looking at Joshua and the way he is, is far more telling than any MRI or CT scan.  If we get offered a follow up MRI, I will decline.  (yep, I know, that is my style....  love to decline stuff!)  It serves no purpose.  To do an MRI, he would have to be sedated which I am not really down with, and we already know his brain is damaged.  A follow up MRI would not change his current course of treatment, so to me, it is not necessary.  I recall them mentioning (after he was born) a follow up MRI at 12 months of age.  They haven't mentioned it again since, but if they do, you know what I will say :)

Oh, that reminds me, I got a letter the other day with details of Joshua's next hospital appointment.  It is on the 8th July and it is with Peter Morris.  I was a bit disappointed about this as I actually liked the other doctor better.  But Peter Morris was his Doctor after he was born and who he was supposed to be seeing all this time if it wasn't for him going on sabbatical to the United States.  Well, I guess we will see what he is like this time...  

Tuesday, May 3, 2011

What a great day!!

In my last post I mentioned that we had gotten Joshua a skateboard to try and help him figure out what to do with his arms to crawl.  I put a video of him using it on facebook and it stimulated quite a bit of interest so I will post it here too, just in case it is useful to anybody who finds this page by other methods!
This video was taken on about the third time I put him on it and he started to push himself backwards and forwards with his arms.  He was also pivoting around in circles.  After I would take him off the skateboard, he would practice the same movements on the floor while on his tummy.  He was quickly able to transfer the skateboard skills to the floor.  

And the very best news of all is that today, at almost 11.5 months of age, Joshua started to army crawl!

I cried happy, sobbing tears of joy!  He went from having no idea what to do with his arms, to this, after only 1.5 weeks of using the skateboard.  Maybe it is a coincidence, but I truly believe that the skateboard helped him a great deal in increasing mobility!   I haven't given up hope that he might be crawling (proper crawling!) by his birthday!