Our Family

Our Family

Thursday, 9 May 2013

Post-Op and PICU

PICU is not an easy place to be. Sometimes I feel Robyn had it easier than most as due to the ventilator she was kept mostly sedated during her time in PICU. There were some very poor souls in that PICU. Hearing them cry was heartbreaking. We were in the process of making friends with another mummy who was also staying in Ronald McDonald House when her little boy sadly took a turn for the worse and passed away. He was also just a baby, it was devastating. Its a horrible mix of guilt and relief. I have never felt as sick as I did one day when the ward was closed to parents due to an 'incident with one of the kids' I went for a walk and came back to find the ward was open again and as i buzzed to get in was taken aside by a nurse. I was so convinced they were about to tell me the incident was my baby had died. (she hadnt but i ended up going crazy at the nurse for the whole way she took me aside when i found out it was for something stupid)

Robyn the day after her heart surgery.

Robyn three days post surgery.

Robyn was weaned off sedation enough to check she hadnt sustasined any injuries during the op and seemed to be recovering well. 9 days after her heart operation her ENT surgeon went ahead and began repairing her Choanal atresia. That op was quick and successful and she had Stents fitted into her nose which were to remain in place for six weeks. She was weaned off the ventilator onto C-pap and then eventually onto air. I was allowed to hold her for short times and was finally allowed to dress her in some clothes for the first time. We spent a total of 18 days in PICU before being discharged to the ward.

Robyn after her stents were fitted but still on the vent.
Robyn with stents but weaned onto air.

At this point Robyn weighed only 5lbs 11ozs a whole pound less than her birth weight, so feeding became a priority. She had difficulty co-ordinating feeding with the stents in though so progress was slow and she was still using an NG tube regularly to ensure she was getting enough volume.

Robyn at her lowest weight

After a total of 6 weeks we were discharged back to our local hospital with stents still insitu. We spent two weeks there working on feeding until the six weeks had run out and the stents were removed. So far there has been no indication that the atresia have closed over so hopefully no further surgeries will be required for this.

Being closer to home at least meant more visitors

We were finally discharged back to our local hospital for good on 5/11/12 when Robyn was 9 weeks old. This is a total of 4 theatre trips under general anasthetic already. We were unaware at the time but Geneticists at Yorkhill had taken samples of Robyns blood to try and find an underlying cause for all of her issues. They already had suspicions of CHARGE Syndrome but we were not told about this until much later, even though Yorkhill received official notice of the diagnosis on 14/11/12.

The first picture of Robyn with no tubes in.