Saturday Family Story: FRom Louise Smith Percy was born on the 7th of February 14 (his due date!), a beautiful planned home birth that was better than Id ever imagined it could be. He was perfect; he even latched really well and after months of worrying we wouldnt be able to we were breastfeeding like pros! We had two amazing days at home together, he slept a lot, but thats normal for a new born. When he was two days old a midwife came out to see us; if you have a home birth your baby has to be seen for their newborn baby checks within 72 hours. She noticed that his breathing was rather fast (over 80 breaths per minute, between 40-60 is normal), I reassured her that his breathing wasnt always like this and because he had no other symptoms such as nasal flaring, a temperature and was a good colour she asked us to keep an eye on him & she would call us later. She called back around 6pm, his breathing had remained quick, but I was convinced he was fine. My boyfriend, Andy, had be counting his breaths & they had reached 90 bpm. She asked us to go to the local hospital in Chester, just to check he was ok; she would ring ahead. On the drive there I remember thinking it was over kill and I was sure he was fine, despite noticing his breathing wasnt right within minuets of him being born; I think it was some kind of self preservation, reassuring me he was ok. When we got to the hospital they were expecting us & started doing Percys observations, they struggled to get a reading for oxygen saturation in his blood, blaming the probe, then the machine, changing the probe, then the machine, then the probe on the new machine....it started to become clear that it wasnt either. Percys O2 saturation was bouncing between 30-60, normal is close to 100. They started giving him oxygen (he was very unhappy as he wasnt use to not being on either me or his dad), Id seen the reading and knew that something was very wrong, I became more and more distressed, in complete and utter shock that this could be happening, everything had been so perfect! Over the next couple of hours it became clear that there was something wrong with Percys heart; they told us it was probably congenital heart disease, and the fact that he wasnt responding to medication meant it was serious. He was ventilated and his transfer organised to alder hey hospital. I remember the whole thing very vividly, but at the time nothing made any sense, my brain wouldnt let me process anything: the consultant, Dr Newby (who was wonderful!) said theyd organise accommodation for us, I had no idea what she meant, why would we have to stay there?? Percy was transferred to alder hey at 7am by the NWTS team, they were amazing. After a couple of scans Percy was diagnosed with total anomalous pulmonary venous drainage, atrial septal defect and hypoplastic aortic arch. We were told they hadnt seen this combination of heart conditions in over 15 years. He was scheduled for surgery the following day, which was terrifying. I couldnt process any of it, when they explained the defect and the surgery they may as well have spoken a different language, but from the second we arrived at alder hey I trusted them and saw the love & care they treated Percy & us with; so I trusted that they were doing what needed to be done to save Percys life. His operation went well, they initially struggled to take him of bypass, and they left his chest open. The idea of his chest being open was too much to comprehend, but when the nurse came to get us to tell us we could go and see him I didnt care, I needed to be close to him again. I never truly realised how awful he looked until I looked back at photos once hed been discharged, I think I saw past it and just saw my beautiful boy. He had tubes & wires everywhere, more than you could ever imagine. Theyd warned us about the swelling too, but I hadnt accounted for how this would effect me emotionally; he could look so different day to day, and that really bothered me, I felt like I didnt know him which made me worried we wouldnt bond when he was better. Percys recovery was rather slow, theyd planned to close his chest after a couple of days; it was open for ten, so he was ventilated for two weeks. I found the best thing to get me through the day was to just sit with him, we read and I stroked him for hours on end. I expressed breast milk every 3 hours, determined that we would carry on breastfeeding when he was better, I clung onto this. Andy and I had said early on that we would both deal with this in very different ways and that we had to let each other deal with it how we could, and to just love & support each other; we never had a crossed word. Percys breathing was really fast following being extubated, at some points 120 bpm, there seemed no obvious answer for it and various people had various explanations, the ambiguity drove me crazy. I would watch his monitor for hours on end celebrating when his breathing slowed and panicking when it quickened. Then one day be turned a corner, his breathing slowed and his feeding improved, if he gained a little but of weight he could come home! The pressure felt massive as it was all up to me and my boobs!! Three days later (4 weeks after being admitted) we were told we could go! It was amazing and terrifying; having a newborn baby is scary, the responsibility is massive: But taking a cardiac baby home, how would we cope!? But we did, with lots of love and support from our amazing family & friends! Percy is almost 10 months now, and youd never know hed ever been ill, hes so happy and full of life! All I ever hear is that people have never met such a happy baby! Hes truly amazing! I dont worry about our bond anymore either, I dont have to. We still go to alder hey for various appointments and will do for years to come. I count us as very lucky, Percy is healthy and happy and home, what more could we ask for? It cant be ruled out hell need more surgery in the future, his aortic arch was still quite thin after his operation, but his latest scans show it as a good size, so surgery is unlikely.
Posted on: Sat, 29 Nov 2014 08:50:39 +0000
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