Recovery (Part 3)

Thursday 17th March

The day after Zach’s operation is a blur as it went so quickly, and we were utterly exhausted. Both physically and mentally. Zach was doing remarkably well and hit some major milestones as the day went on. During the morning wardround on PICU, the consultant asked for Zach to be taken off the off the ventilator. We were asked to leave for the extubation , so we disappeared for half an hour and had another agonising wait to see if he would be able to breathe on his own. He did brilliantly and just needed a bit of oxygen to help him.   

A few minutes after we arrived, we had a small hiccup when his blood gases came back showing his carbon dioxide was too high. This was the first scare we’d had post op, and I suddenly felt sick and remember how fragile he was. We could still lose him. We had to move away from the bed as some consultants came over and discussed the issue with the nurses and registrars. One of the many impressive things about intensive care is how transparent they are with you as a parent. The discussions take place right in front of you.  They stopped his sedation and gave him something to make him come round and have a good cough. This helped him to clear his lungs and when his repeat blood gases came back, the Doctors were much happier, as were we. 

Later that day he had his chest drain, arterial and central line out, as well as his Canula. He was beginning to look like his old self again – well sort of. I could tell by the way Zach was sucking on his dummy that he was hungry – it had been a long time since he had any milk so I asked if it would be possible. The answer was yes, so we got to give him just a little bit of breastmilk down his tube. He seemed so content and went straight to sleep.

   When he was sleeping Zachs nurse asked if we would like a cuddle now that he was attached to less lines and it was easier to move him. Just a little bit! Yes!!! I sat in the big chair and waited patiently, with tears in my eyes. I couldn’t believe this was already possible. Zach’s nurse handed him to me carefully, with Alex’s help and he snuggled straight in and carried on sleeping. It was the best feeling ever. He still didn’t smell like himself, but he was all mine. I am not sure how long I sat with him for, but it must have been more than an hour. In the end, Alex asked if he could have a cuddle, so I reluctantly handed him over. He had been so patient letting me sit there and drink him up. 

        
That evening, his catheter and oxygen support were removed as well as his Pacing box. His heart had not needed to be paced, but the box was attached to the pacing wires left in his chest just in case.

Zach was proving himself to be one tough little boy, I could hardly believe how well he was doing.

Friday 18th March

We arrived this morning to find Zach dressed and pretty alert. He looked amazing! When I lent in to give him a kiss I couldn’t believe how good he smelled – he’d got his smell back! 

 
At 10:00 we discussed giving Zach his first breastfeed. I felt so excited but really under pressure too. I knew that I had plenty of milk, as I had been expressing every 3 hours round the clock – but I was so worried he wouldn’t feed. I needn’t have been worried – he fed like a champion for 20 minutes straight. He was a hungry boy!   The second feed went equally well and before we knew it, we were told Zach was well enough to leave PICU and head back to the ward. So just after noon, we said goodbye to the utterly awesome team in the PICU and headed back to the Ocean Ward.

  
I have to be honest that arriving back on the ward was a total and utter come down. There was little monitoring and compared to PICU the staffing was scant at best. Zach and I were left to just get on with it. There were nosy mum’s asking intrusive questions. Our curtains keep getting pulled open and it was so hard for him to rest. I hated it. I wanted to be back in the ultra cool safety of the PICU with the wonderful nurses and Doctors who looked after Zach like he was their own. I couldn’t bear it. The only highlight was a visit from Alex’s mum and dad and my special bear.


  

I hadn’t really thought about going home before that point, as I had felt so comfortable on PICU I didn’t mind. But I was now desperate to get Zazu home and continue his recovery together as a family. I missed Alex, I missed my bear and I missed our life at home.

As it turned out, we only had 2 more days to wait, as we were discharged on Sunday 20th March. It was an incredible feeling to be able to take Zach home with his heart repaired. We are forever grateful to those remarkable people who looked after him so incredibly well. 

Getting home was so special – the world was the same but our lives felt different now. All we needed to do now was to get rid of the last crutch – Zach’s feeding tube. 



Recovery (Part 2)

As we had a few hours to kill, we decided to make some calls to our loved ones to share the good news, and then go back to our room for something to eat and to take a breath. It was ‘Waffle Wednesday’ back at Ronald McDonald House – we both ate our Waffles as we told our story to the volunteer. It seemed unbelievable.

I remember laying on the bed in disbelief, and feeling incredibly excited as it was almost time to see our little Zazu – less than half an hour to go. We walked back to the hospital with a spring in our step, and I had tears in my eyes as I saw the now familiar sight of my favourite artwork hanging on the wall. I am still not sure why it resonated so much with me – I think it might be because it had reminded me of a sunset but at this moment, it looked more like a sunrise. Alex doesn’t know this, but I have commissioned an artist to recreate this for us to hang at home. It seems very special to me and right that I should be able to look at it every day as a reminder of how brave our little boy is.

Sometime around 15:00, a nurse from Ocean Ward escorted us down to intensive care to see our brave boy. 

   
 I didn’t feel anxious – just excited to see him. My friend had helped me to prepare for what I would see, and I had seen some pictures online. In reality, however, I don’t think anything can ever prepare you for seeing your child like this. 

   

  

  

  

 Zach was still sedated but his little sighs still sounded the same. It was not as hard as I thought it would be to look at him hooked up to everything – it was all there supporting his little life, and I was so grateful. Strangely, a small thing that upset me the most was that he didn’t smell like my Zazu anymore. He smelled of medicine and it was quite unpleasant. I wondered if he would ever get his smell back.

I was so happy when Zach’s nurse asked if I would like to wash Zach after his dressing had been changed. It meant I could do something to help him. The rest of that evening is a bit of a blur, but we spent a lot of time watching monitors and watching Zach’s chest fall up and down. It was strange to see his chest move so slowly comapred to before – it was surreal. His breathing rate was at least half of the rate compete to before the operation. I was excited but then remembered he was on a ventilator so it wasn’t really him breathing, it was the machine. 

   
 At some point, a nurse came to give us a handful of cards which had been sent to the ward for Zachary.  We were totally overwhelmed by the messages of support and love from our family. We felt like the luckiest people ever.    

 

Recovery (Part 1)

In short, we went from this:

To this! 

I am writing this one month after Zach’s operation. In some ways that day seems like yesterday, and yet in others, it feels like a lifetime ago.

After we said goodbye to Zach, we obviously had an exrutiating wait for it to be over and hear the news we were so desperate to hear. We had somberly packed up our things and moved to ‘somewhere more quiet and private to wait for the surgeon’. We were asked to stay here for a little while, at least until the operation had begun. Within about 30 minutes we were informed that general anaesthetic had worked without any complications and that the intubation had been successful. We then had about a 3-4 hour wait. It is incredibly difficult to find words to describe how I felt during this time, but I do remember that suprisingly, my predominent feelings were of relief. The time had come to fix Zach, and caring for him, for a little while at least, was someone else’s huge burden and responsibility. I could do no more for my brave heart warrior. 

I left the ‘waiting for news’ room for the first time somewhere between 12:00 and 12:30 to go to the kitchen to get some water, and one of the other mum’s said to me that the surgeon had just walked into the room where we were meant to be waiting. Bloody typical! I panicked and ran back round to the room – there he was stood in the doorway. I knew straightaway that everything was fine – I could tell by the casual way he was leaning against the door frame. He told us in about two dozen words, that the operation had gone well, that there had been no surprises, no pacemaking required and Zach would be in Intensive Care in about 2-3 hours. Amazing!!!

It was over. Our fighter of a little boy had made it through open heart surgery at 13 weeks old. It was the best news we could have hoped for. For some reason, I went back to the kitchen to tell the mum I had been talking to – I’m still not sure why really. Perhaps I was not able to cope with Alex’s emotions on top of my own, or deal with the intensity of being in that room in that moment, or maybe I just wanted to shout from the rooftops to anyone I bumped into that it was over and he had survived the op. His heart had been stopped, mended and re-started. 

I went back into the room, Alex was sat on the sofa, head in hands. I couldn’t tell if he was laughing or crying – it didn’t really matter anyway. We gave each other a great big hug and a kiss, and we were both smiling from ear to ear. In that moment, as strange as it seems, I didn’t cry. I just felt a monumental sense of relief. And happiness.

Final hours

 

Final cuddle before surgery

 

Wednesday 16th March 2016
Today is the day. In a few short hours and on his 3 month birthday, my son will be taken from me and his heart will stop beating. I’m not sure I can even describe how I’m feeling right now. It’s utterly gut wrenching.

Without question, this is the worst moment of my life. 

How am I going to let them take him from me when every fibre in my body wants to keep him by my side and protect him.

03:00  Ive not slept. I keep looking at him and crying, wondering if these are our last few hours together. I can’t help it. I give him his last dose of medication and ask myself whether it’s pointless as if his fate has already been determined.  

He’s hungry. I carefully lift him off his cot mattress, and bring him onto my fold down bed with me. He smells so sweet and warm. It’s the best smell I’ve ever experienced. It’s like a drug. He feeds so nicely and calmly, you could be forgiven for wondering what all the fuss is about. That was his last milk feed. He nods off to sleep almost as quickly as he stirred and I can’t help but let him linger in my arms. I should put him down so he can rest properly, it’s a big day ahead. But I can’t. I want to savour every moment. And I’m not going to be able to sleep anyway. There’s something in my tummy and throat which feels the size of a watermelon and I just can’t swallow it away. 

06:00 I’ve just finished Zach’s last feed – only water but hopefully enough to keep his belly full enough not to cause hunger pains. I can’t bear the thought of him being hungry and not being able to feed him properly. 
  
06.30 Alex comes back over from our accommodation and we have a cuddle in bed. Zach is sleeping peacefully, oblivious of what’s to come.

  
07:00 We wake him up as we need to give him a bath and wash him with a preparation to help prevent infection. He enjoys the warm water despite the fuss we make of trying to keep his bag covered foot out of the water to protect the Canula. We carry him back to his cot and dress him ready for surgery. It seems a bit ridiculous given he will be naked during the operation. I’ve chosen a white baby gro with blue stars on for him to go to theatre in. It was one my favourites on Joshua and I felt it would be like his big brother looking after him somehow. Our anaesthetist comes in briefly to check we are ready. That confirms it then. We are definitely going ahead with this. 

 

final cuddle with daddy

 
08:00 A nurse comes to take his last set of obs and confirm he has ankle name tags on and to check we are ready. Ready? Is that even possible?  It won’t be long now she says. I decided to take a little walk with Zach. I think I cried a thousand tears which dripped all over him, while I whispered some special words in his ear, but I think I’ll keep those just for us. 

It’s time. I turn my back from everyone and hold him close for one last time. I kiss him on his forehead and say good night. Alex takes him from me and kisses me on my forehead. I can barely see straight. I turn away as the porters wheel out Zach’s cot. 

08:30 He’s gone. I am trying to tidy everything up but I can’t really see through the tears. The room looks big and bare now. I can hear babies crying quietly in the distance, but the silence in our room is deafening. His eyes are no longer looking up at me. He’s gone now. I’ve said my goodbyes. I couldn’t walk him round. I don’t think my legs would have carried us. I couldn’t face watching his eyes fall backwards as they put him to sleep. It’s just too much. 

My baby has gone. 

  

Zach’s big adventure begins

Monday 14th March 2016

6pm – The Call

I was on the phone to my mum when I saw a missed call on my mobile. I recognised the number as a Southampton number and with that the phone rang again. I said bye to mum and answered the call. It was the coordinator from Southamtpon. I’d expected her to call with our date so it wasn’t a complete surprise. What followed, however, was a huge surprise. She said they had a slot in two days time and that we would need to being Zach to hospital the next day. Did we want the surgery slot?

No. We don’t want the surgery slot. We don’t want the surgery full stop if it’s ok with you. (Obviously, the right answer was yes, please fix my son. Thank you.)

I text Alex to give him time to think on his drive home from the station. Meanwhile, I completely and utterly fell apart, whilst trying to stay out of Josh’s sight. I’m not sure I could have coped with him saying “Mummy cry.” So I walked around the kitchen carrying Zach and sobbing quietly. It was like all the emotion from the past 12 weeks came out in one go. I felt so many emotions all at once: I was petrified firstly. I was not ready to hand him over. Relieved. That it was finally here. Relieved that we wouldn’t have to see him struggle anymore. Relieved that the feeding wars may come to an end. Confused. What would we do with Josh. It’s such short notice for Lindsey, it’s too big an ask. Surely. Denial. It wasn’t happening. We could just forget all about it. And Love. My overwhelming emotion was just a rush of love for my little Zazu as I came to accept this was his path and it was time to take a big step together. 

The rest of the evening passed very quickly with last minute washing, packing, bickering and hysterics. There were also moments of feeling paralysed. There also was a lot of humour that evening which masked the predominant feeling of being utterly terrified. 

Tuesday 15th March 2016 

We woke up early so we could pack the last bits, shower and have some time with the bear. We had to fit in the usual meds, naps and feeds in too of course. 

We called the ward and I had mixed feeling to hear that they had a ward bed and PICU Bed. We are on then. 

Before long the time had come for us to say goodbye to Joshua. It felt like I was going away for a month. I must have kissed him 20 times, and got in the car, wiping my tears away. 

   
 We arrived on Ocean Ward and were greeted by a familiar face from last week. Yes we are back already. Yes it was unexpected. But you knew we were coming, and you are pleased we were here. Guess it all go then. 

We were quickly seen to have Zach’s tests done. This involved X-Ray’s, bloods tests and an ECG amongst other things. 

 

x-ray time

    
  
   
We saw the Surgeon & both Anaesthetists that would be looking after Zach. We felt very confident and reassured by these conversations. As much as was possible anyway. 

We had some more bloods and a Canula put in later in the evening before attempting to settle for the night. I stayed bedside with Zach whilst Alex went back to the Ronald McDonald house. 

It was going to be a long and anxious night to come. 

Ocean Drive

  We had our first visit to Southampton Hospital yesterday. We had two appointments: a scan at 12.30 followed by a pre-op assessment with the surgeon at 2pm. On the drive down, I remember thinking that it felt uncomfortable to be leaving the familiarity of the JR in Oxford where we know where we are and know so many of the faces around the hospital. The weather was dreadful. The roads were flooded. And it looked gloomy out the window. It matched our moods perfectly. 

We had to try and juggle Zach’s naps and feeds around the appointments to make sure he didnt end up overtired and wanting to feed while we are on the road. A 3 hour schedule doesn’t give you much to play with. As always I was amazed at how adaptable he was. 

We arrived on Ocean Ward and I immediately decided I didn’t want to be there. It was a ward just for Cardiac children. I thought I might like to just get in the car and forget about all of this. I really don’t want any of it, not interested. Don’t want to know.

Just. Want. To. Go. Home. 

  
But then we were approached by the nicest member of staff I’ve ever encountered. And another. And another. We were shown where the kitchen was and were told to help ourselves. And there were some other parents who smiled sweetly, and we got chatting. It suddenly didn’t feel so bad. Everyone was is the same boat and the staff were all specialists in dealing with heart babies and children. The play room was modern and clean and fun.  I could imagine Joshua playing there very happily. 

  We were approached by some more staff and we took Zach to get weighed before taking him to the room next door for his scan. The sonographer was lovely too and we found out she is the next door neighbour to out cardiology consultant. How bizarre! 
Zach behaved beautifully, smiling all the while through the scan of his fragile heart, despite not having slept for 2 hours. He usually only makes it to one hour without getting grumpy. She gave us our notes to take with us to see the surgeon. When I read them I saw that they were also planning on closing a separate hole in the upper chambers of his heart. We knew it was there but didn’t think it was big enough to bother with. Guess we were wrong! 

  
The first member of staff showed us around the ward. She was very warm. The facilities are excellent, and very focused on keeping families together. We were told that we would both be able to stay, in a parents room on the ward or at the Ronald Macdonald house on site. We could even have Josh staying with us in our room. There was a laundry room, bathroom, kitchen, breastfeeding room – every need was catered for. Sadly there was not a room with a magic wand in. 

We didn’t see the Paedeatric Intensive Care Unit. But that was fine with me. One step at a time. We said our goodbyes, like we were good friends, and left the ward. We went off to find something to eat and drink and guess what we found….

  Things were looking up! Just opened that day, and a café as well. Being able to have a decent coffee and meal will make things better in some small way, I’m sure. When the time comes. And it is coming. 

In no time at all it was time to feed Zach. We found a small dingy looking baby room and went inside to feed Zach and ourselves. Oh the glamour….

   
We ran out of time so had to head round for our appointment with the consultant. I’d breastfed Zach but I was still in the midst of tube feeding him so we just walked with me carrying the tube in the air. We got some very funny looks. Whatever. I’m used to it now. Yes. Sick child. Keep walking. Smile. 

We were met by a very efficient nurse who said the Surgeon was running a little late. She also said Zach would need an MRSA swab and gave us some pre op medicine in case he screened positive. We are definitely having the op then, I remember thinking. Of course we bloody are. There’s no choice is there. She also gave us some leaflets, and asked if we had been shown around Ocean Ward. We didn’t care much for the risks leaflet. But we enjoyed reading the going home leaflet very much. 

We were called in by the Surgeon. For some reason I felt my grasp on Zach tighten. I remember thinking ‘You’re not having him yet. I’m not giving him to you until I absolutely have to.’

He asked us if we knew why we were seeing him. Yes, our baby is broken and he needs fixing. Please. Thank you very much. 

Within one minute he was giving us the detail of the surgery. Sternumectomy, heart and lung by-pass, open the heart, find the two holes, close them… On it went. There was also the mention of cooling and heating his body and the anaesthesia and of metal wires to close the sternum. There was talk of risks: death. (Obviously). The need for a pace maker, more likely, less obvious. Nasty things affecting his major organs. On it went. We just had to bravely suck it all up. 

“Any questions?” he asked. Sure. I have one. Can you not let my son die please? Thanks ever so much. Gulp. 

We now have a 4-8 week wait for surgery. We just want the bloody date so we can face up to it and get it over with. 

The thing is, we have no choice. Zach’s heart is in failure. It must be fixed. We must accept the risks and hand him over anyway. We are dreading that moment and even though we talk about it, I can’t quite compute it. It’s such an odd phase we are in. There are moments when I feel so profoundly happy. And moments when I feel despair. I know which feelings I’d like to prevail. 

 

The same but different

  It seems strange being back. It’s just the same as when we left, but it’s different because we are visiting outpatients rather than being resident on a ward. The faces are the same, as are the sounds and smells. I found it incredibly evocative when I walked in – and it caught me quite by surprise. 
This is going to sound so strange, but I quite like being here. I like taking the familiar walk down the long corridor between the children’s hospital and the main hospital building – to the M&S cafe of course. I like being here because it’s full of people who can help my Zazu get better. They can tell me the things we need to do, how best to care for him and how to prepare ourselves for the days to come as we approach surgery. They each check on him so carefully and thoroughly, and he always smiles back so gratefully. I’m grateful too. For their reassurance, and their expertise and for their time.

We are here to see our Consultant for a check up. It will begin as ever with a weight and height check. Hopefully they will be pleased with his weight. He’s put on a whole pound in one week. That’s pretty spectacular. Then they will look him over as if under an invisible magnifying glass. They will listen to his heart and we will probably go next door for a scan of his heart. They will most likely tell me the hole is still there, and yes it does still need surgery to close it. I can still hope though, can’t I? 

We will see a dietician and our Cardiac Liason nurse. They might suggest we stop fortifying Zach’s milk, or maybe drop a feed or something else entirely. He’s now 4.7kg, he’s getting close now. 

It’s easy to forget his heart is in failure. The meds and tube (which I barely notice anymore) are helping to make his skin and breathing look more normal. If only. Coming back today, away from the busyness of everyday home life, brings it all back to the front and centre.

We are still on countdown. Nothing has changed.