Nathaniel - from well and healthy to open heart surgery in 1 week!

Wow, where to start?? 

I think I can safely say that the past 2 weeks have been the most harrowing, traumatic and stressful of my entire life.

I have been through a lot, and know I can cope with a lot too, but I don't think anything can prepare a person for what we went through...

A few weeks ago we had a healthy 'perfect' baby. One who was born at home, and had had a pretty perfect health record. He'd only seen a doctor 2-3 times in his life and even those were purely routine check-ups. His first and only really issue had been a nappy-rash caused by teething his top teeth,it was clearly uncomfortable for him and we thought it needed a good strong cream to get rid of it. So we made a GP appointment. By the time the appointment rolled around it was already clearing. I almost suggested cancelling, but A decided to go ahead, thinking a general well-baby check-up was not a bad idea anyway.

That was Monday 29 June so exactly 4 weeks ago now. Our lovely competent, and very caring GP Dr Lauren Lee gave Nathaniel a once over and routinely listened to his heart while he was there. She said she heard something she was not happy with, but told A it was likely an 'innocent murmur'. (Note that She'd never heard anything she didn't like before and she's checked him about 3 other times previously) But to be safe she referred us to a cardiac paediatrician, so that he could assess.  Remembering that he was such a robust, rambunctious and well baby we were barely concerned and made the appointment as a formality. 

The appointment with the Cardiac paediatrician Dr Harold Pribut was on Monday 6 July. Since we were fully expecting it to be declared 'nothing', A took him to the appointment and I didn't even attend it. So it was a complete shock and surprise for me to get the call from A following the appointment that actually it wasn't nothing. It was very much SOMETHING.

He referred us to a cardio-thoracic surgeon Dr Susan Vosloo, and we managed to get an appointment that same week on Friday 10 July. She confirmed the diagnosis from Dr Pribut that Nathaniel had a congenital Aortic Valve Stenosis (apparently it seems certain it was caused when his heart first formed and was not caused by any other environmental factors before or since his birth). The valve does not have the typical bi-cuspid deformity (which is the more common issue where only 2 cusps form instead of 3), and is tri-cuspid as it should be, but there is webbing between 2 of the cusps effectively fusing 2 of the cusps and making it work as if it were bicuspid. In additional to this it was ALSO narrowed and not opening to the full diameter of the valve (about 6mm instead of 10mm), so this created restricted flow through the valve and a lot of pressure behind it, i.e. in his heart -I think its the left ventricle. The pressure gradient should normally be about 10, Nathaniel's was 80 (over 70 is considered serious and boarding 100 is dangerously serious). The consequence of this is that his heart has to pump and work much harder to get blood out of the aorta, and long term result is the hart muscle enlarging and thickening and this is not good. The ultimate consequence if left untreated is heart  damage and finally heart failure.

Wow, that was a lot to take in! In consultation with Dr Lee, Pribut & Vosloo we established that surgery was definitely needed and that the diagnosis was not in question, and that Drs Pribut and Vosloo are pretty much in the top of their fields and are internationally recognised as among the very best cardiac doctors in the world.

We were told it was not a dire emergency, but that it was serious and not something we should wait too long to do. They said the 'best' time to do the op would be before any damage was done to the heart, and they felt that this may already be starting to happen.

So between the surgeon, paediatric cardiologist, GP and us we wanted to get it done sooner rather than later. So we dived in and opted to just do it the very next week. Before we had time to think/worry about it too much. And also reasoning that:

1) He was well and healthy, which is the first prerequisite for such a major surgery. If there is any sign of illness it is deferred by a month. I reckoned that if we scheduled it for several weeks in advanced inevitably he'd just get sick in that time.

2) The big boys were home for the holidays so we have no complicated schedules or transport issues, ad they weren't bringing germs back and forth from school too.

3) Nathaniel's 1st birthday is coming up at the end of August, I sort of wanted to get it done and dusted an behind us, and have him forget all about it so he can celebrate his birthday and move on without this hanging over us.

4) There was no real reason to wait, and I am quite decisive generally and once I decide something I like to to just happen asap.

So the op was scheduled for Thursday 16 July. We were told it would be about a 3-hour op (much longer than I had first expected) and it would require a full cardio-pulmonary bypass (ie he'd be on a 'heart and lung machine' and his heart will be stopped and 'on ice' for the procedure and then restarted at the end... ). He'd need to be kept in ICU for about 3 days afterwards and would spend about a week in hospital. So pretty serious and scary stuff!

I had to take him into hospital at mid-day on Wednesday 15 July, for all the pre-op prep. Baseline blood tests, vital stats, ECG baseline, lung x-rays and various swabs etc, and I also spent the night in the hospital with him, having to keep him nil per mouth from the early hours of the morning - NOT easy with a co-sleeping breast-feeder in a too small pull out bed in a noisy disrupted hospital ward.

We were woken at 5am anyway and I had to get him up and give him a  'sterile bath' and dress him in his hospital gown. A arrived just after 6am for a quick cuddle and then he was given the pre-med which made him drowsy and he was soon asleep. By 06:45am we were waiting in the theatre receiving area and by 07:15am they took him away. Telling us to come back at about 11:30am.

We weren't sure what to do. I knew sitting in the waiting room is not a good idea and is the surest way to lose your mind from worry. Previously with Quinn's ear ops I'd go for a run while Dr Raynham operated. The weather was bad though, and we were frankly too exhausted and fussy headed to consider doing anything requiring co-ordination, and neither of us wanted to eat, or socialise.... so we ended up driving home, where I lit a vigil candle and then we crawled into bed and ended up both falling asleep. I actually think that was the best think we could have done as the time passed quickly and we both got some much needed rest, having not slept well in the nights leading up to the surgery and esp that night before.

We got up and still dazed and slow in mind and movement - I felt like I was moving through a thick fog that whole day, and nothing felt real or normal - headed back to the hospital and to the surgical ICU waiting area. We were soon called for and told that all had gone well and he was out of surgery and being set up in the ICU. We were taken through to see him.

Even though I knew what to expect, NOTHING can prepare you for seeing your usually strong, mobile, vocal and vital child lying seemingly 'lifeless' like that with tubes, lines, monitors, wires, bandages, plasters and machines all over. He looked nothing like himself. His head was bandaged up, and he was on a ventilator. His eyes were taped shut, his hand tied down and the drain lines were jutting out of his chest. The chest incision seemed huge and really long. There were arterial and venous lines in his groin and neck and electrical heart pacing wires coming out of his chest. He also had ECG sensors all over his body. The noise of the machines seemed overwhelming. My instinct was to touch his cheek and arm and tell him he was ok, and that we were there and he'd be all right. His ICU nurse snapped at me and told me not to touch him, or actually even to talk to him, as I was affecting his blood pressure and 'upsetting' him. I felt awful, confused, and hurt. All I wanted to do was help him, to be there for him, to soothe him and take some of it away for him, and yet I felt like just being there was making it worse. It was beyond awful. I just stood there quietly, watching him and willing him to be ok.

I can't actually remember now how the rest of that day went. I know we spent the afternoon there with him and at some point we went home for dinner. I think we went back again and then went home to sleep. The next day we got a new ICU nurse Virginia. She was kind and caring and not only allowed but seemed to encourage me to sit near him and talk to and stroke him. She kept telling us how strong and mobile he was and how it was a challenge to keep him sedated. They try to keep the babies sedated for several days post-surgery so they don't fight or fail and rather to keep them still and calm and allow them to 'sleep' and rest through the worst of it so their bodies can just heal. She took some expressed breast milk from me and told me she'd tube feed it to him for comfort and to line his stomach, even though he didn't need it nutritionally yet as he was on intravenous IVs.

After lunch on Friday she told us that he had somehow managed to come out of sedation enough to flip himself over onto his tummy not once, not twice but FOUR consecutive times!!! (He still has a massive and nasty groin bruise to show for that from the arterial line he rolled over). She was astounded. He was semi-waking and moaning and sticking his tongue out trying to talk or something. It was both distressing to see and also heartening to see how strong and 'alive' he was.

By Friday late evening Virginia said that much as they increased the frequency and doses of the sedatives they just couldn't keep him sedated and so were going to let him start waking up. I was fine with that.

By Saturday morning although she said he had had a fitful night, he'd been awake enough to actually take both bottles of breast milk I'd lift and he needed more. He was able to open his eyes and moan and croak a bit when he saw me. Since I didn't have more milk bottles with me Virginia went out of her way to help me to breast feed him instead thinking that would be just what he (and I) needed to feel calmer and more settled. So she got him out of his bed and onto a pillow on my lap (quite a major logistical operation mind you), where he latched on and suckled away making both him and me very happy. What an angel Virginia was and I am so grateful that we got matched to her, she was just what we needed.

Later on Saturday afternoon Quinn popped in while Nathaniel was restless and moaning. And while children are strictly NOT ALLOWED IN THE ICU, Virginia was quite ok with bending the rules and letting Nathaniel's very favourite person come sit with him. Especially when she saw how Nathaniel immediately settled down, relaxed and became calmly alert and responsive as soon as he saw Quinn. She even acknowledged that there is only so much they can do medically, the rest of the healing is done by the family and the nurturing relationships the patient has.

​By Saturday night a little bit of his personality was staring to return and he was babbling away and being quite comical at times, in between being woozy and moaning from the pain. Virginia let us know that he might be ready to be discharged from the ICU on Sunday morning. YAY!

Sunday morning rolled around and I leaped out of bed feeling quite chirpy. I had to drop Quinn off near town to go do some school related community service and so popped by the hospital to visit with Nathaniel nice and early. He was fast asleep and Virginia told me he'd had a really good night, sleeping well and naturally for most of the night and taking bottles happily as needed. He was still fast asleep when I visited, so encouraged by the news and Virginia's assurance that the doctor would be use to release him up to the general Paed ward after her rounds, I decided to head out for a little run. To get some fresh air and sunshine and finally have a chance to BREATHE.

So off I went. I headed straight from the hospital and ran along the fan walk and Seapoint Promenade to the swimming pools and back. It was a beautiful morning, and although I wasn't really feeling very fit or strong, I enjoyed the chance to be out in the 'normal' world. However as I got back to the hospital I realised that all was not well with me... my tell tail physical pressure cooker symptoms started to reveal themselves and Murphy's Law as Virgina pones me to say Nathaniel was being moved up to the ward, I realised I was getting a full-blown migraine. DAMMIT!

There was little I could do other than head straight to the hospital pharmacy to buy whatever migraine treatment they had and down a handful of those, and then call Andrew so he could head over to come be with Nathaniel. Once he arrived I got myself home while I could and slept the worst of it off for a few hours. I have not felt that bad for a long long time, and it was clearly my body's way of letting me know it was not coping and needed to release some of the stress. It felt REALLY HORRIBLE not being able to be there for baby boy though just as he was well enough to be properly awake and sitting up though... 

Once I got back to him though he was happily reading with his daddy and I think they'd actually had some really good quality bonding time, so I guess all's well that ends well.

TBC in part 2...