Going Back

On the day that Noah passed away, the doctor who is in charge of the NPICU was with us.  He was in charge of Noah's care all week and was so wonderful in keeping us informed with what was happening with his care, how things were looking each day and was so lovely to us.  After Noah passed away he told us that often it is good to get together again after some time has passed, to talk things over, and he said that he was more than happy to catch up with us if we would like to.

We joked with him and the nurses while we were in hospital with Noah that we were going to hate Hobart from now on, and will probably never feel the same about going to Hobart again, but we both felt like we really wanted to see him.

A couple of weeks ago I spoke to him on the phone and he was so lovely asking how we all were, including the boys and we talked for a while about everything that had happened during Noah's week in hospital, his passing and how we were coping.  We then set up the appointment to meet and yesterday we drove down to Hobart to see him.  Aaron was at first quite anxious about it, but we both felt really happy about going down to see him, and it wasn't as hard as we imagined it would've been.   We talked to the boys about it during the week and said how we thought it would be good to go and talk 'Doctor Peter' again and thank him for looking after Noah so well, and Harri straight away started to cry and said he didn't want to go to the hospital as it would make him think about Noah and make him sadder.  We said that we felt sad about going there too, but thought it was important to all go as a family and thank the doctors and nurses, and said that they would probably talk to us about how sad we were all feeling and would want to help us feel happier.   He then asked if we had to go into 'Noah's room' where he passed away and we said we didn't have to if he didn't want to, and he was okay with that.

Peter met us away from the ICU and straight away said hi to the boys and mentioned them each by name which was so lovely for them.  We were suprised that he could remember their names. He  took us into a room to talk and had everything set up including jelly beans on the table for the boys. That won Harri over straight away :) Becky just happened to be in Hobart which was great, as she spent some time with Kobe so we could talk properly.

Peter said that it's good to get together to talk over the events, ask any questions and just talk about how things have been going. He said that Noah's time in ICU started off with him getting the call to say Noah was on the way and he knew he was very sick, but realised that he hadn't been in the ICU before and had severe disabilities, so straight away he said he could tell that he had been well cared for and he was very impressed by that. After a little while another doctor who also spent a lot of time with Noah and us during the week also came in into the meeting.   We were so happy to see her as well and she agreed and said that they were all very impressed with Noah's care which was really nice to hear.

We talked about how it became more obvious as the week went on that Noah wasn't strong enough to fight the pneumonia and his body started to shut down and despite them doing everything they could by giving him medications to get rid of the infection and support his heart and kidneys, there was nothing more they could do as both his kidneys and heart were shutting down.   He said it was important for us to know that they had met after Noah passed away and had talked about everything and they wanted to confirm to us that they did all they could for Noah. We said that we had no doubt about that at all, and although it's hard living without Noah, it makes it a lot easier to know that Noah was given every chance possible to recover.

We also talked a lot about Noah's funeral and they said they had heard from a number of people that it was a beautiful service. They also asked us how life was now without Noah and there were a few tears from me, but mostly it was just a lovely hour or so talking things over and to let them know how much we appreciated all that they did for us and Noah.  Peter was so lovely with Harri and Jay and talked to them about how sad they must be now.  Harri told me to tell them that he was the saddest and was crying all the time. While we were talking about how hard it was for Harri he just covered his face and listened.  Kathryn (the other doctor who was with us) said to Harri that he will probably be sad for a while, but one morning he will wake up and realise that he went to bed the night before without crying and that after a while it will start to get easier and that he will stop feeling so sad all the time.

Peter said he thought it was important for us to take a family holiday together and the boys told him that we had already planned a special holiday next year.  He was happy about that and then said that he encourages families to take two holidays as the first holiday is often hard as you are always thinking about your child and what it would've been like if they were still alive and on holiday with you and it can often be a sad holiday to be on, but then the second holiday can be easier and more fun for everyone.

He also asked me what my plans were and encouraged me to do something for myself.  I told him I was keen on doing some advocacy for families who have children with disabilities because we struggled so much to care for Noah in the end because we didn't have the support we needed and he said he thought that would be a good thing to do, but then also encouraged me to think about what I could also do for myself. 

It was so nice to be able to show them a video clip of Noah from my phone of him when he was younger and a lot more interactive and was laughing and smiling at Jalen.  He loved seeing it and said how nice it was to see him well and happy.  At the end of meeting with him he said he doesn't usually meet twice with families, but would like to meet with us again if we would like to go back down to Hobart to catch up with him. I told him he must be desperate for some entertainment to see us again! 

Harri made us laugh at the end as he told Peter that in America they play basketball 'called the NBA and Jalen goes for the LA Lakers and there is a guy called Kobe Bryant who plays for them' (no idea how that even came up) and then Peter told Harri he knew about that as he had taken his boys to LA for a holiday and they had seen the Lakers play live a couple of times. Harri was very impressed!

The doctor Kathryn then took us around to the ICU (after they asked us if we would like to go around there) to see if any nurses that cared for Noah were on.  The nurses that we with us when Noah passed away weren't on shift, but there were three nurses on who had cared for him throughout the week.  One of them was on the morning that Noah passed away (he passed away around 7.15 pm) and we were in tears all day, but she was making us laugh by telling us she was going to make some money that day as she was going to charge 20 cents a tissue.   Every time we would grab another tissue we would joke about how much we owed her.  It was nice to have a little bit of a laugh that day despite what was going on.  When Kathryn went in to see who was on, she obviously heard we were there and came out with a huge grin on her face and a box of tissues!   It made us laugh and Aaron pulled out the credit card to pay for them :)


We spent some time in the ICU and saw that a premature baby was in Noah's spot.  It was actually really nice to be back in there, and Harri wasn't worried about being in there at all.  All the staff were happy to see us including the cleaner who had helped us with Kobe the day that Noah passed away by keeping him occupied. The nurses showed us our card that I sent them, as they had it sitting up on the nurses station window. They said that all of them were in tears when they were reading it, and they loved it so much, especially seeing all the family photos on the front.

Our visit was really lovely and it was so nice to be back there and to thank them all for everything and to let them know how we were doing.   We were sad that the nurses who were with us when Noah passed away weren't on, so this morning we went back in, hoping that they may be on. We were so happy to see one of them.  I actually had thought a lot about how hard it must be for nurses to have to deal with things like that, and how hard they must wonder how the family is coping after they leave when a child passes away.  I felt sad about saying goodbye to the staff again,  because it feels like you are closing another door, but I know we will keep in touch with them.  As Aaron said this afternoon on the way home - even though these people were only in our lives for one week out of Noah's ten years, they will forever be a HUGE part of Noah's life because of the week that it was and we will never, ever forget them.

We stayed in Hobart last night and it was so lovely to get to our accommodation after being at the hospital (and me driving with tears streaming down my face all the way to the accommodation as I just felt really sad about having to leave the hospital again) to a special surprise from Simone (thanks Collette for helping out with the special surprise too).  The boys were very excited about our special basket of treats. Thanks Simone for thinking of us and realising how hard it was going to be and bringing a smile to our faces. 

This morning after catching up with one of the nurses at the hospital, we headed into town to do a bit of shopping.  We were there in time to catch the cat and fiddle arcade clock going off.

Last time Kobe freaked out about it, but this time he was very excited to see the cow jumping over the moon.

We then headed to Salamanca Market.   The boys were excited to go as we had planned on going the day that Noah passed away and of course never made it. 

First stop was to get some snow cones.  

It was a great idea until I got a brain freeze!

We had a lovely morning looking around and just watching everything going on around the place.

The boys were so excited to stop and watch this busker doing all sorts of crazy things.

They thought he was hilarious, and were especially impressed when he swallowed a sword.

After grabbing some lunch (and feeding the seagulls) we headed off to do some more shopping.

Santa was at the shopping centre so we lined up to talk to him.  He was such a lovely Santa (almost as nice as 'our' Santa) and cracked us up as he looks at Harri and says 'now what's your name? Jack!?'. Harri shook his head and then Santa said 'Harry?' just taking a stab in the dark. Harri was so excited and yelled 'yes!!' and was so happy that Santa 'knew' his name (great guess!).  Santa asked the boys what they wanted and was so lovely to them and then Harri said 'how did he know my name!!?'. I reminded him that he is Santa and he knows everything and Harri said 'but he knew my name! Booyeh!'.  Funny boy.

We then headed to Collette and Hayden's engagment party. It worked in well that we could go to the party and also catch up with the doctors and nurses at the hospital on the same weekend.  It was really nice to be able to celebrate with them.  Last year when Noah was in hospital a lot we loved getting visits from Hayden every day as he was working in the hospital, and he kept coming back despite my stirring him to hurry up and get married. We are so happy that it's finally happening :)

The trip home from Hobart this time was so different to the last time.  Both Aaron and I had tears streaming down our face the whole drive back from Hobart last time as we had to leave Noah's body there and drive away.  We talked on the way home today about how glad we were to go down to talk to the doctors and nurses, and to have it confirmed again that we knew it was Noah's time.  It doesn't mean it's easy, but it's nice to not have any doubts or questions in our mind about what we could've done differently.  

It's hard to believe that it's now 7 weeks since Noah passed away. We said to Peter that it seems like so long ago that we were in hospital with him, and so much has happened since then, but then again it seems like it was just yesterday too.