The worry of children


These are extracts from my Journal from 1993. If you get through to the postscript you will see why I have included it now.

6 January 1993, Narooma, NSW

Lyn is pregnant. We found out at Narooma, told the kids and Glen spent the next ten minutes telling total strangers around the Camping Ground.

Sunday, 7 February 1993

We had our first netball game of the season tonight and the boys asked Lyn why she didn’t play. “Well you saw how many times Daddy and that other man ran into each other and fell over didn’t you.”

“Yes”, they chorused.

“Well that wouldn’t do the baby in my tummy much good would it.”

“Would your baby get squashed and cry?” asked Maddy.

Monday, 19 April 1993

Last night I lay in bed with my hand on Lyn’s stomach and felt my unborn daughter move for the first time and I lay awake for the rest of the night wondering if I would ever comfort her when she cried, change her dirty nappies, watch her first steps or hear her first words, for last Friday we were told that our baby had a problem.

Lyn had an ultrasound scan which revealed that the baby had a diaphragmatic hernia and that it’s stomach was actually in the chest rather than the abdomen. This has displaced the heart to the right hand side of the chest and obviously lessens the room available for lung development. And therein lies the problem. Without proper lung development the baby may not be able to breathe when it is born. In the best case scenario the baby will need an operation at birth; at worst it will not be able to swallow at the 30-35 week mark of the pregnancy which will cause a build up of fluid and the chances of survival will be minimal. We will only know what the chances are as time goes on.

We have told the kids of the possibilities. Luke was extremely upset on Friday night, sobbing, “It’s not fair. How come Glen and Me and Madelyn were alright and this baby isn’t.”

I asked Glen if he had any questions and he characteristically said “No.” However, on Saturday night he sat in an armchair with me and my arm around him for almost an hour, so he was obviously also feeling a bit insecure.

On to August

Over the next few months we visited the Foetal Diagnostic Unit (FDU) at Monash Medical Centre for regular scans. We had access to the surgeons who would be conducting the operation and the Obstetricians of the FDU. We actually learnt little about what the chances of survival for the baby were and with hindsight, the conservative approach to predicting her fate was probably best.

However the uncertainty of the outcome caused a lot of stress over the next few months.

Quite early on, Lyn and I approached Bryan STROUD (Tecoma Primary School Principal) and the boys teachers, Jenny HOOPER and Terry KEMP. All three were terrific. Luke apparently broke down on a couple of occasions, once when he tried to explain the baby’s condition during “Show and Tell”. Glen still kept most things to himself.

The frustrating part about this period was that all our plans had to be put on hold. We didn’t want to go ahead with a loan for a new car or the planned extension, we couldn’t evenbuy new nappies or clothes for the baby.

Some people asked why we had chosen to go ahead with the pregnancy because the offer of termination was made by the FDU. Lyn and I did discuss it but when we were told that the only thing wrong with the baby was a hernia, albeit a potentially fatal one, we really had no choice but to continue. Once Lyn had had an amniocentesis and all possibility of other birth defects were discounted we had to go ahead. We decided that if we didn’t give the baby a chance at life we would spend the rest of our lives wondering what may have been. At least this way she would live or die on her own merits.

Thursday, 19 August 1993

Lyn’s waters broke at about 4:00 am. this morning and now at 7:15 we are at the Monash Medical Centre awaiting the birth of our daughter. I think it was easier for Fathers in olden times when birth was an arcane mysterious rite of womanhood. Right now as Lyn paces up and down before the window I feel bloody useless.

Friday, 20 August 1993

Karen arrived at the hospital at about 8:00 a.m. yesterday morning, Lyn having invited her to be at the birth. At 8:30 Ken arrived, and shortly after, Lyn’s Mum and Ray. And they sat and chatted, Lyn’s Mum getting out her knitting and saying “This is marvellous. In my day we wouldn’t have been allowed in like this.” The whole time Lyn’s contractions were continuing, and were down to about 5 minutes apart. At about 9:30 they left and went to sit in the Fathers Room, luckily, because my Mum, Debra and Elaine had all just arrived. The delivery room was starting to look like the Myer Stocktaking Sale.

Lyn kicked into proper labour about 10:00 a.m. and at 11:25 our daughter, Erin Clare, was born. She gave a brief cry and after the cord was cut was handed to Dr. Michael STEWART and three others on the Paediatric team. She was quite blue when born but as she was placed on the trolley her arms and legs were waving wildly. She had a tube stuck down her throat and was ventilated quickly, changing to a healthy pink. I think it was then that Michael said that she had ventilated easily and that was a good sign. And the good signs continued over the next few hours.

Erin has in fact done remarkably well and although we aren’t completely out of the woods yet we seem to be better than a 50/50 chance now. Tomorrow morning the surgeons will look at her again and if she has remained stable they will probably operate. And so we approach a few more hurdles.

Saturday, 21 August 1993

Erin went into surgery at about 9:00 a.m. this morning. Now at 12:45 she is in recovery and will be returning to the Intensive Care Nursery shortly. Prof MCMAHON has seen us and said that there was a complication in that the tear in the diaphragm was larger than anticipated and that they had to insert a mesh webbing to close it properly. Lyn keeps expecting or hoping that they will tell us she will be fine, but there’s still a long way to go.

We’ve seen her now lying helpless and totally limp from the drugs they’re pumping into her. The incision follows a line beneath her left ribs. The surgeons have said they’re happy with her so far and that her left lung was reasonable. I guess that’s all we can hope for at the moment.

I’ve told the family not to come in today, Lyn needs a rest, and to be honest we don’t want to see anyone today.

Monday, 23 August 1993

Erin had another stable night. One of the paediatricians told me yesterday “Two more days.” I don’t know exactly what she meant although I presumed that we should be over the hump sometime tomorrow.

Lyn had several visitors beginning on Friday, several of whom found the whole thing very distressing and I guess it is. To see a tiny baby lying helpless, unable to move, linked up to all manner of tubes and wires is very distressing and Lyn had a few people crying on her shoulder.

I arrived at the hospital and Lyn was crying. She’d just been told that Erin’s left lung had a hole in it. Apparently the surgeons are hoping that it will repair itself without the need for further surgery. Lyn saw Dr. KIMBER later this afternoon and said, “When will you tell us to relax and be happy and stop worrying.’

“When we do,” he said. “Don’t worry I will definitely tell you.”

Shortly after the bad news though we were told that they were stopping the paralysis drugs and it wasn’t long before she began to twitch. For the first time since her birth we saw her move, her mouth sucked and her fingers clasped my finger when I placed it in the palm of her hand.

It is very difficult to look further than a day ahead. I wake each morning knowing that since I haven’t received a phone call that everything must be alright.

Glen was crying on Saturday night. He wanted his Mum and he was worried that his sister wouldn’t be able to come to Narooma at Christmas. I caught him this morning as he was about to wander up to breakfast and called him into bed with me. I asked if he had any questions and he said “No.”, but then kept asking them for the next half hour. I think he’s feeling a bit better but he’s still quite fragile. We sometimes forget that the kids have been just as anxious as us in their own way.

Luke said to me on Friday night, “Dad, I’m glad I’ve seen Erin now and that she looks normal.’ He then went on to say that he imagined the outside of her stomach was up on her chest too. I suppose he had visions of some sort of freak being born and it wasn’t something I’d really considered. In our attempts to be_.totally honest with them we forgot what overactive imaginations they had.

Wednesday, 25 August 1993

I’m sitting in the hospital car park writing this; as of 3:00 p.m. today Erin is no longer on a respirator. For the first time since the minute of her birth we’ve been able to see her face uncovered of tape and unobscured by tubes. She is now no longer regarded as critical and for really the first time I can start to think of myself as the Father of four children and look a little further ahead than tomorrow.

Lyn came home yesterday and is coping incredibly well. She didn’t like the idea of leaving Erin in the hospital but we’ve had five months to come to terms with the fact that this was a possibility and it was a far better result than what might have been.

Thursday, 26 August 1993

It has been the longest week of my life; one in which I’ve swung through many emotions but managed to keep them all pretty tightly under control. I’ve found my concentration span is very small and even whilst writing this my mind keeps drifting off thinking of other things.

I returned to the hospital last night and was glad that Lyn wasn’t there. Erin was very distressed, her lungs looked as though they were trying to power the bellows in a blacksmith’s shop. She was giving a small grunt with each panicked breath and her eyes were open, wandering all about the place as I stared at her beneath the box in which her head was encased. The medical staff decided to replace the prong in her nose to assist her breathing. Amanda, the intensive care nurse who was at her birth and who went with her to surgery, said that she seemed to be in a bit of pain.

Although logic told me that this was not a real setback my helplessness made me feel otherwise. I got home to find Lyn crying. She said that it wasn’t because Erin had the ventilator reinserted but because she didn’t like to think of her baby crying.

This morning Lyn saw Dr. KIMBER who said, “Remember I told you I would tell you when to stop worrying…Well you can now.” But that’s still easier said than done.

Sunday, 29 August 1993

Erin is still on the ventilator but is currently breathing a mix which stands at 21% oxygen (i.e. air). She is also down to 15 assisted breaths per minute. Interestingly she is far more settled on her left side than her right, perhaps because her right lung therefore has less work to do. She also is off the pain killers but still receiving an occasional sedative.

Her stomach was looking hard, the skin stretched and bruised yesterday, but seems far better today. She has also been fed again albeit a paltry 3 mis of Lyn’s milk every three hours. The bile which had been a constant feature of her stomach contents finally cleared up yesterday.

Both Luke and Maddy have touched their baby sister; Luke happy to stand and stroke her skin, Maddy to touch and snatch her finger away quickly as if she expects to be bitten. Until today Glen had declined to touch her, I don’t know why. Today he washed his hands and gently stroked her leg.

Tuesday, 31 August 1993

The milk that Erin was being fed was being aspirated with the rest of her stomach contents three hours later. Until today they were putting in three mis and withdrawing the same amount. It is apparently not uncommon for the stomach and digestive tract to shut down after an operation but the fact that the doctors weren’t worried still wasn’t quite enough to keep me from worrying. This afternoon however, all that changed and it now appears that she is digesting the small amount that she is getting.

Erin is now no longer receiving any pain killers or sedatives and is occasionally being placed on her stomach instead of her side. She may be taken off the ventilator tomorrow.

Lyn had her first nurse today.

Thursday, 2 September 1993

Erin is off the ventilator and is so far coping pretty well. Lyn and I spoke to Professor Victor YU yesterday (he is in charge of the paediatricians and NICU) who said that it may be that she will have to be put back on the ventilator in a couple of days. Apparently there is a possibility that without the odd pressurised breath, the fluid in her chest may collapse her left lung or at least inhibit it’s function. Only time will tell.

Sunday, 5 September 1993Postscript

On Friday evening Erin was moved out of NICU and is now in Bay 5 at Newborn Services. At the same time the IV lines weretaken out.

Last night we went in with Luke and Maddy (Glen was at a birthday party) and we were all able to nurse her. Lyn gave her a bath which Erin didn’t particularly enjoy, but she was hungry and it was good to see the normal reactions of a hungry baby. I was able to calm her by sticking the knuckle of my little finger into her mouth.

Monday, 6 September 1993

We got into the hospital yesterday afternoon and found that the night shift nurses had made me a Father’s Day card on which they’d taken Erin’s hand and foot prints. A nice thought.

Today Lyn put her on the breast for the first time and will have to spend as much time as possible in the hospital over the next week or so. There is now a possibility that Erin may be home as early as next week.

Tuesday, 14 September 1993

At the time of my last entry we were still being told that Erin could be in hospital for another 2-6 weeks. By the time Wednesday of last week came the doctors were saying that if she put on weight by Friday she could come home at the weekend.

So Saturday Erin arrived home, aged 23 days and three long short weeks since her operation. I don’t know if this is a record but it is certainly close, the last two babies with diaphragmatic hernias had been in hospital for 6 to 8 weeks. The staff were still shaking their heads in wonderment.

The past few days have been spent getting to know our daughter and sister. I remember my Mum saying that when Debra was born, Karen and I spent a lot of time with our heads in the bassinette. Well Luke, Glen and Madelyn are no different. Glen is particularly enamoured because, with Erin, he now has another red head in the family. He would sit nursing her all day if we let him.

Postscript

Erin did come home in record time but 10 short weeks later she began to bleed from her bowel again because the pressure of the organs pushing against the patch caused it to act like an egg slicer. So she became the first baby to be operated on twice for this condition. And then at 16 weeks the same thing happened again, only this time the surgeaons decided to replace the silicon mesh patch with a goretex one.

That lasted until she was nine years old when a fourth operation was required when her growing body caused the scar tissue around the patch to tear once more.

And now as a 13 year old she had an MRI yesterday which appeared to show some more irregularities. So we will know in the next few weeks if something more needs to be done. I should say that she has grown into a wonderful young lady and very much the teenager now with some of the angst that comes with that of course.

Lyn and I are now separated and moving on with life but we will continue to share the worry about our childrens futures and in particular those times when they face great challenges.

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