On Thursday 3rd Jan, whilst having a cuddle with Jo, Mia decided to stop breathing. Twice.
After 93 days you think you might have experienced everything? Highlights since the last blog include…
Having a show of hands when Thomas went for his MRI scan as to whether he should have the express (3 min) or deluxe (20 min) brain reading because neurosurgeons are too important to telephone. (He had the deluxe scan obviously on a machine partially funded by my production managers brother).
When consulting with the neurosurgeons after the MRI scan and asking the simple question “Was everything Ok?”, getting the response “Fucked if we know, we’ve never scanned a baby as premature as Thomas”. (Record breaker klaxon)
Being chivalrous enough to allow a lady to jump the toilet queue at St Marys’ only to be repaid with a dirty protest leading to a heated exchange then discovering she was the mother of the child in the next incubator to Thomas. Talk about “awkward”, Larry David has nothing on me sometimes.
But whilst the fun and games continue in Manchester, back in Bolton Mia has been slowly getting on with things and like the Russian space program has knocked up a series of impressive firsts.
First twin to be fully fed
First twin to come off support
First twin to come off a Ventilator
First twin to be cuddled
First twin to come off cpap
First twin to come off optiflow
First twin to breathe unaided
First twin to be dressed
Last twin to break through the 1Kg barrier
The only problem with Mia is she is slow to gain weight and had a large, slightly unsightly, inflated belly. She had been scanned, tested, x-rayed to the hilt and it appeared to be purely a large amount of trapped wind. It didn’t seem to cause her much discomfort but was none the less a bit of a medical mystery. One day we hoped she would omit a cavernous fart and the matter would be resolved.
Now you may not know that Thomas took us to the edge over Christmas. After his operation was cancelled for the third time, he maxed out on his ventilator and left us with very little room for man-oeuvre. 3 days before Christmas I had a discussion with the consultant that no parent should ever have and discovered an amount of information that I hope is never of any use to me. Luckily he came back from the edge, good job really as I might never have forgiven him if he had ruined Christmas in that way. In the end he rallied enough to be glued back together on New Years Eve.
As Thomas messed around with our emotions, visiting Mia in Bolton was like a visit to a spa. We were now allowed to get her out ourselves, dress her, cuddle her and perhaps more importantly, Jo had commenced breast feeding. It was on one of these long cuddles with Jo that Mia decided to stop breathing.
It is not unusual for premature babies to stop breathing but it was for Mia. Jo’s heart skipped a beat, the nurses came running, Mia was comforted and everything returned to normal but something had changed. This wasn’t Mia. Thomas is the one who is poorly. Thomas is the one who gives us heartache. Mia is just content, happy, settled if a little on the skinny side. We were deeply unsettled.
Tests were done, X-rays taken, antibiotics prescribed to be on the safe side and as a precautionary measure her feeds were stopped. Nothing unusual showed up, perhaps she was tired from doing everything so well for herself for so long? The consultants were in constant dialogue with the surgeons at St Marys for a second opinion on what may have caused her apneas and her large belly.
Sunday 6th January
Jo had done a morning visit to Mia whilst I looked after the kids who don’t live in incubators. After lunch we went to St Marys. Thomas was looking really good and was in the mood for a cuddle. I was busy outlining to Jo as to why I deserved first cuddle having not had one since my birthday (a month ago) when the following actually occurred…
** Reconstruction **
Becky Fothergills Neo natal nurse niece Sam wanders over to us, Thomas’s parents, and engages in small talk along the lines of “Thomas’s looking really well” and “How’s his sister doing?” etc. This is not unusual, most of our conversations in NICU are very similar but obviously inverted when in Bolton.
“She’s doing ok”, I replied “but they are concerned about her belly and have been liaising with the surgeons here at St Mary’s”.”Is she coming here?” asked Sam. “NO!” screamed me and Jo. Cue comedy interruption of the sister, “Er can you come with me Mr & Mrs brown, I need to have a word, we’ve got Bolton on the phone and we are talking to the transport team…”. Oh bollocks!
** Reconstruction over **
For whatever reason, there was capacity in Thomas’ room and this is where Mia was heading. Unfortunately the empty incubators were not adjacent to Thomas but we made it abundantly clear that we would not be happy unless they were together. The nurses understood what this meant to us and began to make it so.
We could have just waited at St Marys but on Saturday I had taken the christmas crap to the tip. For the first time in over 80 days we needed our emergency suitcase and it was sat in our garage in Bromley Cross. Double bollocks.
The usual plan dropped into place, I spoke to Kim Horton about Chris Malones VAT affairs, we rang our parents and made plan for Lilly then we headed home to pack some stuff. As we went to grab some tea in a local pub, the phone call came through that the transport team had reached Bolton. We raced over there whilst obviously staying within the boundaries of the specified speed limits.
Mia looked too settled to be going to St Marys. When we had done this journey previously with Thomas it was for life saving bowel surgery. Mia was fine, happy, content. We followed the ambulance but he put his foot down and soon lost us. Tea skipped, we called into Kentucky fried chicken for our once yearly visit and consumed a meal that probably shaved 15 minutes off our lives. Soon we were back at St Marys washing the grease off our hands. In our absence the nurses had held good on their promises to reshuffle the room (thanks Belinda, Inneka & Kirsty x) and for the first time in 81 days our children could see each other with their own eyes#
(-: # – more of an emotional description as they are only able to see vague blocks of light & stuff at their point in life but I think you know what I mean 🙂
Although the Russian space program got many of the early milestones, the Americans where the ones who got a man on the moon. At St Marys that evening, many new milestones were accomplished.
First simultaneous cuddle of both Thomas and Mia
First double cuddle by Jo of Thomas and Mia
First double cuddle by Me of Thomas and Mia
First time Thomas and Mia had touched since being in the womb at approx lunchtime on the 5th October 2012 (21,475,200 heartbeats in twintime®)
A simply unbelievable reunion which could only have been bettered if it had been Thomas who had returned to Bolton instead. All the time though a nagging suspicion hung in the air that Mia was simply too well to be in a room full of really sick babies. Do we actually care? Not really. This outcome suits us emotionally at the moment. No more double visiting, no more being at the wrong hospital at the wrong time. No more guilt at never spending enough time with either child and best of all only one place to ring before we go to sleep and wake up.
All too soon though, Mia may return to Bolton from her little trip to visit her brother and this reunion may turn out to be frustratingly short…
(For the weight Gurus – Thomas is 6Lb 3oz & Mia is 3Lb 0.5oz)