The past week has been a big one in Jack’s journey and for us as parents. Last Tuesday night we did a Sleep Study in air which is 12 hours overnight where the monitor’s information is then downloaded at the hospital and reviewed alongside my notes about what happened at what time (when he slept, when he ate etc). The results would determine whether Jack is ready to go completely without assisted oxygen.
The results were as we expected. The sats probe on his foot never picks up a proper trace when he is awake because he is never ever still so for the full 12 hours it was a fail but if you remove all the awake time and just look at the 8-9 hours he was asleep then it was a pass with flying colours! Exactly what I told Andrew would happen, knowing our fidgety boy!
So Denise the NICU lady said it was down to the consultant’s interpretation of the results which we would find out on Thursday 7th July. So off we went, me and my Mum as hubby was working, to the appointment on the Thursday. Jack was weighed and measured; he is now 13 lb 4.5 oz and is 66cm tall! Two more centimetres and he’ll have doubled in height! Woah! His head circumference has doubled too I think.
So the consultant then called us through and then confirmed what we had waited 7.5 months to hear – Jack is now fully weaned off any assisted oxygen. He is in air full time 24 hours a day permanently! Oh god, I have waited and waited for this day. There were times when we thought it would never come. How far my brave fighter has come from being on a ventilator at birth. I cannot explain how proud I am of him and how amazing it is to be his Mummy.
The consultant then had a little examination of him and asked about his hernia. I said that Jack’s hernia hardly ever makes an appearance nowadays and true to form, it was not apparent to Dr Bala either. He did say however that we would be seeing the Surgeon for an initial consultation on the 19th of this month so we now where to go from here. I hope that as it is not causing any problems or discomfort and because it is not always present that they will decide it would be pointless to do it now and will wait until he’s older and much stronger. My fear is that they put him under for the procedure and then he ends up back on oxygen again. And I don’t even want to think about how I will feel about watching him get wheeled away. I will no doubt end up having a massive panic attack. My boy has been through so much.
The consultant then also took his sats probe off his foot and said “oh he doesn’t need that anymore” and I was like – what! I may not use the sats monitor all day but that is because I am looking at him all day so not in any danger of cot death or anything. I still very much use the monitor at night so I can sleep without waking every hour to check his breathing. Dr Bala sad that the oxygen cylinders and sats monitor only stay in my house for another 3 months so he wants me to wean myself off the monitor.
This makes me feel extremely anxious as I am terrified of cot death. The nasty thoughts in my head keep saying – what if he just slips away while I sleep? I was the same when my sister was a baby. I would wake in the night and go to her room, just to put my hand on her chest and check she’s breathing. This fear is much worse when it’s your own child.
So on the advice of a couple of other premmie mummies (Mum’s whose babies were Jack’s room mates in the NICU!) we bought an Angelcare Movement and Sound Monitor. It’s basically a sleep apnea mat that goes under the mattress that alarms if it doesn’t detect breathing. There’s also a normal audio monitor that we can use later. We switching from the sats monitor to the Angelcare for the first time last night and it was fine. It didn’t alarm, of course it don’t, but I could sleep soundly knowing he’d still be alive in the morning.
This I know makes me sound paranoid but hey, what would you do in my position having been through what I have? I bet any new mother would take a sats/heart rate monitor had they been given the option. We are lucky in Derby as our NICU has an amazing charity that buys all these monitors for home oxygen babies to borrow. Other hospitals whose babies come home on oxygen don’t get monitors and their NICU person just comes and checks the saturations once a week! Derby peeps are so lucky, thanks to FOBU Friends of the Baby Unit charity.
So here we are. Jack is now wireless. No oxygen prongs and no sats probe. His sore spots on his cheeks have gone (from where the sticky pads were). He is functioning as a normal baby. But he will always be my brave boy who fought everyday to be with us. He is my hero. Always.