Opening Doors

Owen is winning everyone over, our family, friends, and strangers he has opened doors in peoples hearts that can only be opened by this soul, it is so beautiful to be apart of and observe, it is transforming.

The Pendulum

I have been busy posting about the past year trying to catch up but reading back through my posts one thing is missing.

Its the emotion of coming to terms with Down Syndrome.

This I know - everyones journey is different. Ours has been affected by Owen's health which meant the grieving process kept getting put on ice until each crisis was over.

At first I swung between love and grief, acceptance and denial and I will admit it rejection. I thought about adoption - give him to someone that WANTS to take this on, because I thought "I can't DO this", I cried, I sobbed every day for 5 weeks after Owen was born.

We had little support from family and friends who also struggled with Owen having Down Syndrome.

Then we found out that Owen's heart needed to be fixed and all I wanted was for my baby to live, to sing to dance to feel love and to be loved. I realised how much I loved and wanted THIS baby.

And grief is diffiuclt you know - its like a pendulum and just when you think your okay you are totally in acceptance without warning you can be swung back into those dark sad feelings of grief.

That pendulum has swung back and forth over the past year, but the arc is getting wider and wider with more time spent in acceptance and love than grief.

As Owens personality comes out, as he grows and he progresses and I learn to reorganise my thinking, to get a tougher skin, to get educated, I am coming to realise that IT REALLY IS OKAY, I can do this - (look what we have done already).

Shining bright

Today is May 27th 2010. A year ago today Owen's heart was repaired.

attached is a photo of Owen wearing his heart beads - every bead represents the procedures he had during his hospital stay (needles, canulas, blood tests, xrays, drains, scans, THE operation and the most beautiful, colourful, heartshaped bead for discharge from hospital).

We are so grateful that his star has a chance to shine.

RSV

We finally left Westmead and came home a full month in hospital, so wonderful to be home again but .........................

next up for Owen was RSV

its a very nasty respiratory virus for a person that has just had cardiac surgery - though better that he got it after surgery than before surgery when the outcome could have been too awful.

Instead the RSV put him in hospital here in our home town for 10 days and he needed O2 (his sats were 80% when we first arrived in hospital)

RSV also sensitised his lungs so that every cold virus he got after that put him in hospital between July and October we were in 5 times for around 5 days each time.

Finally at the end of October we came home and the weather cleared. During this time though Owen was THRIVING ! He stacked on the weight and grew like a weed - all the energy that was going to his heart was now going into growing !

Hypothyroidism

another update
Owen was moved to the cardiac ward 3 days ago, his heart rate was too slow and so the external pacemaker was still attached and initiating the beats of his heart, plus naso gastric tube, oxygen and cardiac monitoring.

But yesterday the NG tube and oxygen was taken off and he was allowed to breastfeed whenever he wanted (the previous day he had his first breastfeed and he remembered how to do it - everyone is impressed it was a wonderful moment for me. I have longed to hold him, comfort him while breastfeeding. The pacemaker has now been turned off (for 2 days) and his heart has taken over - beating well.

So the plan for today is to take the pace maker wires out which are still attached to his heart (internally) and then my boy will finally be mine again, this is the final tube/wire etc to come out after surgery. He needs to have cardiac monitoring for 4 hours after the pacemaker wirees are removed and then that can come off too.

Things to worry about now are - his temperature is up between 37 and 38 degrees (they say they see what will happen if it goes over 38 then antibiotics will be started ) and he has low thyroxine levels and has to have a couple of scans to see why it is so low - checking thyroid function etc) He started thyroxine medication.


No word of when we can come home yet but I am thinking it must be sometime next week??
stay tuned.

Surgery

Adjusted (being 6 weeks early) Owen is only 3 weeks old when he undergos his heart surgery, in the cardiologist letter he wrote "I fear Owen will not make it to the next cardiology appointment". We flew to Sydney (a 9 hour drive from here) and took our little 17mth toddler with us but we were far from family and friends. I wrote this email to them after the surgery:

Surgery went well the surgeon was happy with the way things went he said the holes in his heart were very large and his heart had been working hard to pump his blood around, the valves he made using Owens own tissue were working very well.

Since Wednesdays operation he has been on life support but yesterday they took him off the paralysing drug and last night he opened his eyes for the first time - it is like he has been BORN again, we were so excited and he is responding when we say his name and talk to him he opens his eyes WIDE, its magic.

Probably the most shocking thing has been how swollen he is particulary his face, Col and I said that if there was a line up of babys we wouldn't have recognised him, they say this is normal due being on life support, not moving at all and the heart being "insulted" after becasue of the surgery. But now that he is coming off the paralysing drug and he is starting to wiggle and blink the puffyness is going away quickly.

Oh and yesterday he started having breastmilk all 2 mls and hour (now up to 6 mls this morning), and one of the chest drains came out whoo hooo (a big moment).
He will remain on life support today he is still having some trouble maintianing his blood pressure and he ison the pacemaker again today not sure why but that is a step backwards I guess overall though he is inching forwards. He is going very steady which we are really thrilled about.

We have moved to Ron Macs house which is fantastic we are very lucky to have got in it makes things alot better for us, everyone is very generous.

We are holding up, though at times it is very very upsetting and exhausting. There are SO many babies and families here going through a difficult time, we are not alone and we all support each other.

Okay well I have to go thanks to everyone we feel loved and supported.

Cardiology visit

HORRIBLE

Owen is in heart failure, his lungs are wet and he needs medication right away, he also needs surgery right away. The cardiologist asked us "did you know he had DS before he was born" I shook my head no, then he asked "what would you have done !!!!!!!!!!!!!?????" WTF!

We couldn't believe that he asked that, the gall of the man.

an email sent at the time to a friend:
Owen has one major hole and 3 other things wrong (complete AVSD) with his heart all which require surgery at Westmead.
The next step is a pre surgery appointment in Sydney, the cardiologist made is sound like the appointment should be sooner than later but gave no indication of a timeframe, I guess it depends on the priority of other cardiac patients in the state. We are shocked that things are so bad, we knew there was a problem of course, but his heart had sounded fine under the stethoscope until last Thursday when it suddenly became very noisy (the pediatricians words) and he also had developed fluid on his lungs making it hard work for him breathing. It is all so sudden when he had been doing so well.
He is on medication - a diuretic to reduce his blood volume to ease the pressure on his heart and lungs. He seems to being going just okay - he has had a cold on top of everything else.
Col and I have been very upset but have pulled together again and we are ready for the next step (daunting as it is). At every moment we just try to put as much love and (for my part) breastmilk into him as we can and we think, I mean we are pretty sure that he smiled at us - he has done it twice now (on different days) such gentle, peaceful little smiles - it melts our hearts !

Getting out of hospital

So the following days are a blur, trying to establish breastfeeding, Jaundice that made my baby so very sleepy that he needed a naso gastic tube to deliver breast milk to him and required hours and hours on the "Bili-bed" (much better than the overhead lights) , moments of apnea with heart rate below 100 and O2 sats at 60% (very scarey), an ECG of his heart which was anything but reassuring (an appointment with the visiting cardiologist was booked) BUT finally, finally we inched towards those doors of the hospital and home. And during that 7 days since his birth we also finally came up with a name that suits him
this is how we told family and friends

Brothers

My face was so red and puffy from crying hard but it was time to let the rest of our family meet our new baby. My first born son Randall was the first to met Owen I told him "We think the baby has Down syndrome" and he reached out and touched me and said "its okay mum he'll be fine, he's my brother and I love him". It was a naive yet perfectly wise statement a statement of unconditional love. That moment was so touching, so profound I will never forget it and it carried me through these early weeks.

Next was baby/toddler Cyrus's turn to met our newest baby, and of course there was Love so tender and unconditional, nothing but love for our new baby. You can see it here http://www.youtube.com/watch?v=96b6mDndeDE&NR=1

The open palm

After an hour or so of snuggling with baby Owen - I handed our newest baby boy to my husband and I had a flicker of anxiety as I thought he looked like he had down syndrome - This is what I saw from the bed (insert photo here) See his eyes a little turned up at the edges ? I asked my husband - do you think he has DS and he rolled his eyes and shook his head in a soft reassuring way. But when my Col left the room and a midwife came in I asked her - "this may sound like a strange question but do you think my baby might have DS?" and instead of saying "oh no your baby is perfect" she said "yes I do think he has some of the features". I sat still in the bed but on the inside I was running, screaming, shaking I looked at my new baby asleep in my arms, I remember thinking no, no no HE IS FINE .....

Then she opened my baby's palm....

and showed me the single crease in his palm, a very distinctive feature of DS (though not everyone with DS will have it).

Col wasn't back (he had gone to get the rest of the family) and the Ped arrived, he started to undress my newborn baby and pointed out (actually poked and prodded) all of our perfect baby's "imperfections". I was felt like I was dying and I was alone my baby lying undressed at the end of the bed like a petal torn from a flower.

Finally he said the baby has 6 out of 10 DS markers that is a strong indicator and we should consider a genetic test to confirm it. Col came back at that moment.

I can't describe the spin I was in, the hurt, the pain, the confusion and the rest of our little family had arrived outside and were waiting to see their brother and newest grandchild. For a while we didn't know what to do next...

The begining

I was 34 weeks pregnant and got back into bed after *another* toilet visit in the deep dark of night, when I felt a familiar pop (all three of my labours have begun with my water breaking). I laid there trying to ignore it, wishing it wasnt what it was, but after a few gushes and the bed starting to get wet it was time to admit that my baby was on its way!

The date was the 21st of March 2009 - which I would later find out is World Down Syndrome Day. My little chickee was 6 weeks early, he wanted to be born on THIS day the most important day of the whole year !

I had a Csection due to problems from my second childs birth and I remember just longing to hear the baby cry to know that babys lungs were going to be okay. And there it was - a long Bellowing sound - WHAT THE HELL JUST HAPPENED HERE !!

My husband and I had begged for the baby to be delivered onto my bare chest, I had read alot on baby crawl (see http://breastcrawl.org/video.html and we wanted to give this baby the BEST start. Since his lungs were in such good order the Ped. was happy for the baby - A BOY - to be put to my chest. I will never ever forget that moment...ever.

Owen stopped crying immediately and then under the cover of a blanket he opened his eyes and looked at me.

His eyes were SO dark so enchanting.

But there was something else too, it was his nose it looked....... well flat, like he'd been 10 rounds with Tyson it looked strange -

But those EYES they burned into me,

and then he started to kick and lick and suck his hands and I am sure if I had been able to move I might have been able help him to the breast but lying flat while I was being sewed up wasnt' helpful. I also noticed that if I took my hand away from his dear little head it flopped forward and so I left my hand there supporting him so his head didn't flop downwards,

Later I would learn that the flatness at the bridge of his nose and low muscle tone (not being able to hold his head up) are some of the indicators of Down syndrome.

In these minutes before we knew about DS we were so happy, so relived and so tired !
All that was about to change.

The first Year

Well wow, here it is - the blog at last. Acutally the hardest thing was thinking up the title !

I have been a HUGE fan of online blogs from parents of children with Down syndrome, they have helped me (unknowingly) through the grief of unexpected diagnosis, the harrowing experience of open heart surgery and they continue to inspire me and encourage me to expect the best of and for our baby with DS beautiful, wonderful, funny, baby Owen. And now I hope I can give just a little bit back to them.