Welcome To Holland

Since Noah was born I have been looking into different things to do with HIE (Hypoxic Ischemic Encephalopathy) which is what Noah suffered at birth.

I stumbled across a group of people on Facebook whose babies had suffered the same thing. All in different degrees. Some were only mildly affected and have gone on to have small if any long term disabilities, some, like Noah, are very severely affected. And there are many in between. Although we all have different individual stories and babies some of our questions and emotions are very much alike. It definitely helps to know you are not alone and there are people who can truly understand what you’re going through.

Some of the people I have met have blogs like the one I made for Noah. I was reading one ladies blog and she posted a story she had come across. It really hits home with me and I wanted to share it with you.

"Welcome to "Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

”I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas.You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland"
you say. "What do you mean Holland I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

After reading this I realized that I don’t want to keep going over the why’s and what if’s. I don’t want to be stuck in the past and focused on all the negatives. Noah may not be here for a long time but I am going to do my best to find happiness in the time we do have. Yes I really wanted to go to Italy (and maybe one day I will get there) but I ended up here in Holland and I am going to do my best to find tulips -xx

Has It Been 6 Months?

Noah has hit the 6 month mark and his latest stats are:

Weight:  7.310 kgs
(14.2  Percentile)                                

(89.6 Percentile at Birth)

Length:  67.8 cm

(43.2  Percentile)
(92.5 Percentile at Birth)

 Noah is currently not doing so well. He is having severe muscle stiffness and his seizures are starting to come back a little. He is back to being constantly upset when he is awake. It breaks my heart. Aaron and I are exhausted but we are trying to keep each other sane.

We are back and forth to the hospital in Perth (PMH) quite a bit. Noah now has a Neurologist, Occupational Therapist, Physiotherapist, Dietitian, Speech Therapist (Who helps with feeding), Ear, Nose and Throat Specialist, Pediatrician, and I'm sure I’ve missed some! He will also in the near future see the Ophthamologist and a Gastrostomy Specialist. Then there is our Palliative Care Nurse who is our overall coordinator. Plus we have to go to the Pharmacy to collect medicine and also deal with hospital supplies for Noah's feeding equipment.

This month Nana Dot came back for a visit. I was able to fly to Melbourne for a quick visit to see my family. My younger brother is in hospital, but it looks like he will make a full recovery :)

Also Aunty Nuz dropped in for a quick visit. She brought Noah a cute kangaroo jumper with a little Joey it.

Noah's Nursery

Before Noah was born I picked out the nursery set I liked. Of course the one I liked was a new design and there was a delay in it being available :) I was finally able to get it last week and I wanted to share it with everyone because I think it is so cute.

Noah Smiles

Every now and then Noah has a tiny little smile and very rarely something that sounds like a giggle. Here was the first time he smiled for a few minutes in a row. Luckily I just happened to have my iphone handy.

Climbing Mt Kinabalu For Noah

I am constantly reminded and touched that I am part of such an amazing family. In July Narelle, Trav and Carlee are heading over to Borneo to climb Mt Kinabalu. And they decided to do it for Noah, to help raise money for his care. I can't even say in words how much this means to us. Thank You guys so very, very much. I hope you have an amazing adventure!

Or see Narelle, Carlee or Travis to donate

Donations can be made to: CUA Bank Account Name: Special Purpose

BSB: 814282 Account No: 31135952

Where Things Are At - May 2011

Currently Noah is approaching the 6 month mark and the doctors are actually surprised that he has made it this far. He hasn't developed any absent reflexes like his sucking or swallowing. This causes his breathing to be very strained and he coughs, is congested and stops breathing sometimes. He doesn't track with his eyes at this point, can't see or doesn't register what he sees. We are waiting on further hearing tests but we think he can hear but he doesn't respond to sounds too often. He has very high tone in his arms and legs and is very floppy in his trunk. He used to be able to hold his head up when on his tummy but he can't do that now. His vomiting is under control, so that's one less thing annoying him. He has become very irritable and  is upset and/or cries 70% of the time he is awake. In all honesty he is not happy and it breaks my heart to have to see him go through this everyday. But we do have hope....hope that Noah wont have to endure his suffering for too long. It is a terrible thing to have to hope for, but we love our baby boy so much and just want what's best for him. We want him to be free.

Of course we will continue to take each day as it comes and try to hold our heads up. Very, very rarely Noah will make a little smile or laughing noise (usually when he is asleep or just waking) We just have to make the most of the time we have. Aaron and I were already pretty strong, positive type people but we have really had to dig deep and just keep on digging :) We really couldn't have stayed so "sane" without the help of our family and friends. We love and thank each and everyone of you xoxo

Noah Goes To Hospital

When Noah was 5 months old he started developing strange sort of quick jerking movements. He would put his arms out then move them really fast into the middle, turn his head to the side, arch his back a bit and stare. He would only do this for a few seconds. It was quite scary and over the next few days started getting worse. At first we thought it was just spasms but we soon realised that something was different. We took him into the hospital and he had an EEG done. It showed that he was in fact having seizures. By this time he was doing it quite a lot. It was worse when he was tired or trying to fall asleep. Even if he was asleep sometimes he would jolt and wake himself up. The neurologist told us that it looked like he was having Infantile Spasms. He was put on Sabril, an anti-epileptic that is specifically used for IS. It seemed to help and after a few days he came home again.

Then after a few days at home they started to come back. One day he didn't really sleep all day and night. He would keep having these seizures and couldn't sleep because of it. Of course it happened to be the long weekend over Easter so the usual doctors were away. It got to 11pm and we decided to take Noah back to the hospital. He was admitted and given something to help him sleep. He had another EEG and it was discovered that he was actually having Mycolonic Seizures, of which Sabril can actually make worse! So he was put on a different anti-epileptic called Epilim. This really upset his stomach and he started vomiting and having other complications. Noah was in hospital for another week and this settled down and now 2 weeks later he isn't having any seizures that we can tell.

Help Has Arrived!

Noah was about 4 months old when Nana Dot, Aunty Di and Aunty Grainne come to stay for a month. It was a blessing! At first I didn't know that Di's daughter Grainee was coming too. I didn't really know her very well and I wondered how she would be with Noah and me being the neat-freak stress-head that I am was worried about having too many people here. But I must say she is a gem. She is so easy going and sweet. She was great with Noah and it was nice to have someone to hang with and someone to watch The Kardashians with. Thanks gorgeous girl :)

It was so great to have them here, they all have there own unique wonderfulness. Nana Dot would take Noah when he woke up in the morning so we could sleep a bit more. Noah very often had a snooze with Nana. Di had a knack for holding Noah just the way he likes it and would tell him very interesting stories and Noah always seemed to fall asleep right on Grainee, when he wasn't vomiting on her that is. They all learnt how to look after Noah and really gave us a break while they were here. And who knows hopefully they will all be moving here soon.......

Aunty Nuz is Back

Noah was now just over 2 months old. His condition had started to worsen and he had started to vomit quite regularly. He also was having temperatures and feeling very clammy. He had started to cry not only at night but also a lot during the day. Our once stable datum of the bath soothing him didn't seem to work now either. We were giving him medication to help him digest his food better and to stop any burn from any reflux. Just when we thought things were hard enough we had to dig deeper and just take one day at a time.

Then Aunty Nuz came over for a visit to cheer us up. She was so good with Noah and watching her I realised how much of a great Mum she will make one day. Thanks Narelle for everything. Your the best sister in-law ever!

Uncle Trav Comes To Say Hi

Noah was around 13 weeks old when Uncle Trav came to meet him. He brought a gorgeous little photo book that Aunty Carlee had made.

Our good friends Gary and Ellena looked after Noah for the day and we went out for a winery tour in the Swan Valley. It was great to get out and unwind, although it felt really strange and I had to keep reminding myself that they would be fine and not to worry.

Noah showed Trav that he was a one-eyed Magpie supporter too!

 

Grandpa & Grandma Visit

Noah had a visit from Grandpa David and Grandma Lea when he was about 9 weeks old. They brought lots of presents and were keen to help out. My favourite present that they brought with them was the one from Lea's sister. It was a beautiful "Noah's Ark" money box and it was engraved with Noah's name and birth date.

At this stage Noah would sleep a lot during the day or be pretty chilled during the day. But at night he had a pattern of crying for hours and hours. The only thing that would soothe him was when we put him in his bath. He would stop right away and relax. Then as soon as we took him out again he would start up again. His breathing was also getting a lot worse.

 

It was great having some spare sets of hands or arms more so. We would have to hold up Noah's syringe which was filled with milk and would slowly go down his tube. He was on thickened milk so sometimes it could take ages. Lots of tired arms :)  Thanks Grandma and Grandpa

Coming Home

When Noah was 7 weeks old he was able to come home. We knew it was going to be tough, as Noah pretty much needed 24 hr care. Also 2 nights before Noah was due to come home he started crying for the first time. At first we were happy to see this change... but we would very soon be wishing we hadn't. So with what felt like half the hospital in our car we said goodbye to KEMH. We had all sorts of different equipment (NG tubes, syringes, tape, PH indicator strips, kangaroo pump for overnight feeds, kangaroo sets for the pump, suction unit, thickening powder for his formula, medication......) we had a lot of stuff to get used to. It was very daunting bringing Noah home but it was also a relief knowing we wouldn't have to go into the hospital everyday.

When we got home we showed Noah around and introduced him to "Jack" our cat of 12 years. Jack gave him the head but of approval. It was really surreal bringing Noah home and having him in bassinet and nursery. This really was so different to how we imagined things would be. At this point Noah would sleep pretty much all day then he would wake and start to get uncomfortable with stiff arms and legs. He would cry for hours and hours, but only at night.

Merry Xmas With Aunty Nuz

Aunty Nuz came to meet Noah and was here for Christmas with us. We went in early Christmas Day to see Noah. He had lots of presents to open. Santa (from the hospital) had visited him too and had left a gift.  It was a Christmas teddy. They also made us a card with Noah's footprints and a photo on it. We decided to take Noah for a walk outside in his pram. He loved it and he actually smiled when we went outside :)

Then it was time to say goodbye to Nuz for now. It was great seeing her and we had lots of fun making christmas-pudding-icecream-chocolate things that turned out nothing like the picture hehe.

Noah gave Aunty Nuz one last goodbye before she left and showed her how he could lift up his head.