With the nature of Gwendolyn’s delivery Jon and I weren’t aware of what happened in the first few hours until much later.
When she was delivered by c-section she did not breathe and was blue so the neonatal team went to work on attempting to resuscitate her. Her first gasp was between 2-3 minutes after she was born. Initially they struggled to intubate her but as her heart rate improved with the neopuff they successfully intubated her 6 minutes after her birth. She was then whisked off to the Neonatal Intensive Care Unit (NICU). Her first few hours she kept the staff very busy and it wasn’t certain that she would survive the first 24 hours. The next afternoon I was wheeled round to the ward to see her. She was so so tiny I was scared to touch her. Her nurse that day was Lizzy, who explained how she was doing (although with my morphine cloud I just remember nodding in agreement with everything!) and the machines around her. They’d reduced her nitric oxide and she was doing much better than in the few hours after birth. I just couldn’t believe how tiny she was and that she was still alive.
Day 2 – Over the next 24 hours her oxygen requirement had dropped a lot so they extubated her and instead she went onto high flow oxygen. I couldn’t believe it at that stage that she was actually breathing for herself after being told so many times that her lungs would have a high chance of just not working!! Jon was able to start learning how to do nappies on her while she was still tiny ( standing was still a bit emotional for me!)
Day 4 – Moving Day! As Gwendolyn was doing so well and her oxygen had been able to be reduced, she was transferred over to the High Dependency Unit (HDU) across the corridor.
Day 5 – My first ever cuddle. Gwen had remained stable and with me able to move a bit easier her nurse suggested we have our first cuddle. I was completely petrified. I know most mums can’t wait to hold their newborn but she was so so tiny and delicate I was terrified that I might break her or something! Words cannot explain what it felt like to feel her tiny chest breathing next to mine. I didn’t dare move incase she wasn’t supported properly. I completely understand why skin on skin is so important for them – but its definitely scary when they’re that tiny!!!
Day 9 – The first week had gone so well with her improving but the second week saw her oxygen requirement beginning to creep back up with increasing number of bradycardia and desaturations. Every doctor and nurse will tell you not to fixate on the machines when you first arrive on the unit but for those first few weeks, when its your baby setting the alarms off, you can feel your heart pounding as you wait to see if she can recover herself.
Day 10 – Due to her increasing oxygen requirement, combined with anaemia, Gwendolyn is given her first blood transfusion. An echocardiogram (heart scan) diagnoses her with a PDA (Patent Ductus Arteriosus). By this point Gwendolyn is on a CO2 monitor as her levels seem to be creeping high and higher.
Day 11 – Gwendolyn is moved back to the NICU as her oxygen requirement and CO2 levels are both rising and she’s having an increasing number of apnoeas. She is started on a course of Ibuprofen which is known to sometimes have a side effect of closing the PDA, which is responsible for making her lungs having to work that much harder at the moment. She’s put onto CPAP a machine that whilst letting them breathe for themselves, provides a constant air pressure to keep the lungs inflated.
Day 12 – Gwendolyn’s CO2 levels have continued to rise and are now over 15. The decision is made to intubate her – and strangely I’m almost relieved. Watching her fight the CPAP machine and how hard she’s working to breathe, its almost better to see her not have to do all that work and have the effort made for her. We’re both thinking at this point that maybe the rest will help her and give time for the ibuprofen to start working.
Day 14 – Its only in doing her nappies that we notice that she’s not seeing anymore despite fluids going into her. She’s gone into renal failure. A scan shows good blood flow to the kidneys so its just wait and see while the diuretics are increased.
Day 16 – Gwendolyn goes into renal failure again. The ibuprofen is stopped and she is given more diuretics for her lungs. The doctors start talking about maybe sending her to southampton hospital to have the PDA forced closed with surgery but as she is still so tiny, they want to try and give her time to grow bigger and stronger. By this point Jon and I are at the hospital all day, everyday. Our job as parents seems to be to wait to see if anything changes, just to hold her hand or change her nappy.
Day 22 – Gwen’s not getting any better and is still on the ventilator…. Her CO2 levels are rising again as is her oxygen. A cardiologist comes to scan her heart again and he says the PDA is quite large which is putting extra stress on her lungs. With her condition he recommends that she has the surgery to force the duct closed to try and give her a chance.
Day 23 – It all happens very very quickly and before we know it Gwendolyn is being prepared for ambulance transfer to Southampton for surgery. Off we go to a new hospital to see if they can help her..