On Friday the 8th we arrived for the scan at King's College hospital. The results showed that the due date of 12th March (the day before Daddies birthday) was correct but found Lillian's bladder was rather full and that there was quite a lot of amniotic fluid. An antenatal Doctor was called and suggested they put Mette on a foetal heart monitor. This lasted an hour or so and they looked happy but suggested Mette goes to the maternal assessment unit for a second run just to make sure. Mette and I were busy talking over what to buy at Sainsburys for dinner that evening when a nurse entered the cubicle, took a look at the monitor and told us both to stay calm. The nurse then pulled the emergency cord and in less than 5 seconds there were medical staff everywhere. The next thing we knew Mette was being wheeled down the corridor on her bed to surgery. I was allowed to hold Mette's hand whilst they administered the anaesthetics but then had to go to the waiting room and wait for the longest hour of my life. Eventually I got tired of waiting and entered the unit again asking random people where Mette was. Finally I found Mette in the recovery room being looked after by a nurse. Lilian had been taken to intensive care.
During the final period Lilian had been getting weaker and weaker. The nurse pulled the emergency cord because Lilian's heart beat was extremely weak. Even though she was 9 weeks early it's far better to treat babies outside of the womb if the condition is life threatening. From the moment the nurse pulled the emergency cord to when Lilian was born was just 20 minutes. That includes running down a corridor and putting a terrified Mette to sleep. Lilian was born without life. Her Apgar score was at 0 for 4 minutes. At 4-6 minutes she got to 1 but that was due to drugs and various apparatus. Lilian was in big trouble and would need to spend some time in hospital.
|The first time I saw Lilian. A few hours old.|
The first 10 weeks
Lilian spent a total of 10 weeks at King's College Hospital and even had a weeks holiday at St Thomas' Hospital (on the River Thames opposite the Houses of Parliament) to look at a problem with her kidney.
|On ventilator (3 days old)|
|Lilian saying "no way!"|
The list of "firsts" for Mette and I is quite different to the typical birth I suppose. Still we get to have a list none the less so here it is:
Seen by Dad in real life and on camera phone by Mummy.
Seen by Mummy.
Touched by Mummy (just on the hand through the port hole)
Lilian opens eyes for first time and sees Mummy and Daddy for first time. Not for long though as she's still on sleeping drugs for a while yet.
Mummy and Daddy change Lilian's nappy. Also ventilator taken off for first time.
Mummy and Daddy get to actually see Lilian's face without the tubes and mask.
Cuddle with Mummy.
Cuddle with Daddy.
|First cuddle with Daddy on Day 11.|
|First cuddle with Mummy on Day 9.|
Lilian accepted Mette's expressed milk via an NG tube quite early on and the amounts given increased as she tolerated it more and more. I remember being really excited that she managed to take 1ml of milk! At this stage Lilian was still just a premature baby (in that they were still figuring out what caused it all) so she was moved onto breast feeding and despite her age and size we were told she was doing very well. We were chuffed.
During this early period the medical staff were still trying to figure out what happened. They found some white spots on an MRI (due to her tough start and lack of oxygen) but a subsequent MRI showed them to be relatively minor and just advised a check up when she turns four years. Her bladder size in the womb was related to an issue with her kidney which cleared up with drugs and isn't progressing. They also found her heart muscle to be slightly enlarged (Hypertrophic cardiomyopathy) but various echo scans and multiple ultra sound scans have shown this not to be obstructive.
When it was discovered Lilian had Costello Syndrome a lot of the jigsaw pieces fell into place. Lilian was moved onto bolus feeding (breast feeding hadn't gone very well and Costello children don't feed orally for the first few years) and we were slowly prepared to make the next step of going home. Lilian wasn't on any extreme drugs and her current goal was to eat/sleep/poo (in that order) until she grew big enough to go out into the big wide world.
Finally at Home:
It made such a difference getting her home. She was a more settled and a happier baby. The doctors and therapist were all very pleased with her progress. Lilian was broadly on track developmentally and generally doing well.