Day 8 - One week old

Jessica is now a week old and started off the day by having Happy One Week Birthday (to the tune of Happy Birthday To You) sung to her at 08.50 – exactly one week after she was born.

She is now able to come off the CPAP and have oxygen through nasal specs instead. The original plan was just to take her off the CPAP for an hour and see how she got on, but she coped so well with it, that she didn’t need to go back on to the CPAP at all. It is so lovely to be able to see more of her beautiful face and hair now that she doesn’t have a CPAP mask and hat covering it all!

We had a call from our cardiac consultant in Oxford, Dr Manning, to let us know what the plan for surgery was after the big team meeting on Monday. Jessica is going to have a catheter inserted into her groin feeding into the main vein from her legs going into her heart and then this is going to be used to check the blood pressure in the pulmonary veins back from lungs which will give more of an indication of how likely it is that long term plan of further surgery would be successful for her. The team are also considering putting a stent (artificial tube) in to either the ductus arteriosus or the descending aorta to help keep this open to allow good blood flow from her heart to her body and allow her to come off the prostagladin keeping the duct open.

If all goes well with this and Jessica recovers well, then hopefully she could come home for a while and then the situation would be assessed over the coming weeks with a view to further surgery around six months if the venous pressures are low enough for her to survive this.

From what we have researched, part of the procedure that we had last week (pulmonary arterial bands) along with the stenting procedure being considered now are what is known as a hybrid procedure which is sometimes done instead of a Norwood procedure, particularly with smaller babies as it delays the major reconstructive surgery to a later stage when the risks are lower.

We spent most of the day enjoying as many cuddles with our baby girl as possible. As Jessica no longer had a CPAP mask on, Louise was able to try to put her to the breast again. However, Jessica has a tendency to go straight to sleep the minute she is in mummy’s arms and this combined with the splints on her arms made it a bit tricky to try and latch her to the breast! She did manage a couple of sucks though and it was nice just to have some skin-to-skin cuddles.

At the time of posting this update, Jessica has just gone in for the operation. We will try and update as soon as possible – please continue to keep our daughter in your thoughts and prayers.