Congenital Diaphragmatic Hernia - Jenny's Space

Hi Everyone,

On Saturday 24th March when I was 37+5 weeks pregnant I started leaking amniotic fluid during the night and after calling the hospital they told me to go straight in for monitoring.  They put me in the L & D ward and watched and monitored me to see if I would go into labour on my own.  After a few hours when they realised I hadnt started going into labor they put me in a hospital room and told me that they would schedule an induction for the following morning.  They gave me antiobiotics because of my ruptured membranes and induced me at  9.00am on Monday 26th March.  After 9 hours of contractions my obstetrician checked me and told me I had only dilated 2cm so she scheduled me in for an emergency C-section.  Dylan was born at 6.34pm that night.   

In the first few days he was doing really well but he was kept under close observation in the special care nursery for monitoring of a heart condition which was diagnosed prenatally.  Yes thats right - we knew from our 16 week scan that this baby had a hole in his heart and that there was a 50% chance he would need surgery at some stage to fix it. 

Dylan did so well in those few days but then a week later he started going into heart failure so they intubated him, gave him some medications and told us he needed to be operated on quickly.  He was put into the NICU and I cant tell you how we felt when we received that phone call during the night to tell us that.  I felt like history was repeating itself and we would surely lose this baby too.  We waited for a bed at the childrens hospital in the city (all our cardiac babies are operated on at the children's) and by the following night they had transferred him.  He had his open heart surgery at 10 days old (Alex also had his surgery when he was 10 days old) to fix a large hole in the heart and coarctation of his aorta (which we didn’t know about before birth). The operation took 5 hours and he did quite well. The only problem being that he took about 3 days to wake from the anaesthetic and his blood pressures and glucose levels took a little managing.  He spent about a week in the NICU at the childrens and was then transferred back to the hospital he was born in.  He needed a few days to establish his feeding and to gain weight as he had dropped 200g below his birth weight and they were concerned about his weight. 

In total he spent almost a month in hospital and we were finally able to take him home on 20 April.  That day was the happiest day of our lives.  We are so happy to have him at home but still so frightened that he will become sick again.  He will need constant checkups for his heart condition as there is a possibility that the coarctation can reoccur in the next few months and he also has a heart valve that may need fixing in the future but for now he is growing every day and we just hope that he wont need surgery again.

My days are now spent feeding, changing nappies and going to various appointments for Dylan.  I never realised how much time a baby took out of your day but Im enjoying motherhood and realise how blessed I am to have him.  I am also fortunate that Dylan looks nothing like Alex so I can look at Dylan and know that he is Alex's younger brother and not a baby that has replaced him.  I must admit that the first few days after Dylan was born were hard because I was in the same hospital and my memories of having Alex there were just so overwhelming.  Now that we have Dylan at home I have new memories to fill my heart and although I think of Alex constantly Dylan has helped me realise than life moves ahead and I can be happy again.    

He is awake again so I better go.  I hope to update again soon !

Jenny