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.

HDU

When Noah was about 5 weeks old he was moved to the HDU (High Dependency Unit) We continued to visit him each day and started to learn how to do all the bits and pieces ourselves. We even got to give him a proper bath :)

 

After 6 weeks of pumping breast milk (not the funnest thing in the world to do) and bringing it in for Noah we decided to introduce Noah to formula. He seemed to tolerate it well. We were becoming better at feeding Noah his bolus/gravity feeds in his tube. Although our first try saw Noah wearing most of it on his head when he knocked the syringe out of Aaron's hand.

Nana's & Aunty's Visit

One thing that has been comforting whilst going through all this is knowing we have the support of our wonderful families. They are amazing and are worth their weight in gold!

A few days after Noah was born Nana Dot and Aunty Di came to visit. They had planned to visit just after Noah was born and although the situation was not what we had all been expecting they really took charge and helped us out immensely. We were going back and forwards to the hospital everyday and they did all our cleaning and cooking and cheered us up when we really needed it. (Love you guys xx)

Then Nana Pam and Aunty Judy came for a visit. Poor Aaron was sharing the house with 5 women! It was really nice to have them here. My Mum brought keepsakes that had belonged to my Nan who had recently past away. One was a pillow that said "A mother holds her children's hands for a while, and their hearts forever", it made me cry because I realised that no matter what happens I will always be a mother. There was a "Parents Only" policy in the NICU, but fortunately they allowed the girls to meet Noah. It was such a blessing having them all here and then it was time to say goodbye as they headed back to Melbourne.

 

NICU

A few hours had passed in the NICU and we discovered that Noah had  what is called HIE (Hypoxic Ischemic Encephalopathy) Which basically means that he suffered a loss of oxygen to his brain due to a lack of blood flow. The cause of this is unknown. It usually happens when there are problems with the cord, placenta, infections, etc. But in our case nothing showed up and we will probably never know what went wrong. Noah's Apgar scores were 1, 3 and 4. Noah underwent 72 hours of cooling treatment - from what I understand this is to help minimise any further brain injuries. At this stage we just had to wait and see....

When Noah was 10 days old we got the MRI results. They showed widespread damage to very key areas of his brain. They also showed degeneration of the spinal cord and a small haemorrage, both due to the brain damage. Noah also had an EEG which showed very abnormal brain activity. We were devastated and shocked and angry and all those words all at once. We couldn't believed that this would happen to us. The Doctors at KEMH were absolutely awesome. We spoke with them a lot about the results and what we could expect. We decided that we didn't want any more medical intervention to prolong Noah's life. This was the hardest most heart breaking decision we have ever made but we believe it is for the best. We didn't want to see Noah suffer.

Noah came off the ventilator and started to stabilise. It started to sink in exactly what we were in for. I have never been so scared in my whole life. Not only did we have a new baby with all the normal things to handle but now we had to deal with a whole, whole lot more.

Due to Noah's brain damage he is not able to suck or swallow. We don't know if he can see and we think he can hear, but minimally. He is very stiff in his limbs at times and his trunk is very floppy. A lot of his basic reflexes are absent and some are very overly sensitive. Due to him not sucking or swallowing he has a nasal-gastric tube that he is fed through. At that point we didn't know what to expect and were visiting Noah in hospital every day. Its all a bit of a blur really.

Noah David Reed

Noah was born at 8:37am on 17th November 2010 weighing 9 Pounds 4 Ounces.

After a very tough, but textbook natural labor Noah was born into my arms. I held him for literally 3 perfect seconds, it was then that we realised he wasn't breathing. There were no signs of distress up until this point. Noah was rushed to the NICU (Neonatal Intensive Care Unit) resuscitated, intubated and put on a ventilator, among other things which are such a blur I wont try to go into detail.

Noah took his first gasp for air on his own when he was 45 minutes old. Aaron was upstairs with him. I was so tired and worn out from such a long labor. This was the first picture I saw of Noah.