As promised, here is part two of Jack’s journey from his Daddy’s point of view. It picks up where we left off as Andrew had been to visit Jack for the first time a couple of hours after birth then it was time to nip home for a sleep after such and emotional 24 hours.
“I hardly got any sleep that night, partly because of visions of my tiny baby connected up to all of these machines, and partly because the cat was so pleased to see me she wouldn’t leave me alone. After getting some sleep, walking the dog, and feeding the cat, myself and the dog, I made it back to hospital, to find Laura had just had her drain removed by the time I’d got there. (Dodged a bullet there) By this point she still wasn’t well enough to go and see Jack, so had to make do with my pictures of him. We discussed how small he was, and why he was on a ventilator and everything else.
20 hours after the operation to free the boy, Laura was finally allowed to go and see him (after she proved she could get up out of bed and get into a wheelchair) She was wheeled through for her first meeting with Jack, who at that point had stretched himself out of his nest of bedding, and was lying like his dad on his back, with his arms above his head and his legs straight. It was a very emotional time as it should be with the first meeting of your offspring. But this was different, we couldn’t hold him, all we could do was look through the Perspex incubator at him. He was tiny, 2lb 6oz/1089g at birth, and 34cms long (about the same size as a school rule)
Skip forward on week, we’re allowed to hold him!!! Only for a short period of time, as he’s so tiny and fragile, and tires incredibly quickly. Sadly I have a cold, and don’t want to pass it on to a baby with chronic lung disease, so I spectate from afar. Jack is off his ventilator, and now plumbed into a machine called BiPAP, this is a none invasive breathing apparatus which fits over his nose and breathes for him without the need of a hose down his throat and air blown directly in his lungs. He’s also had a blood transfusion..! Wait, what? A blood transfusion? Yep, that’s what they call it when they top up Jacks blood level with about 40ml of blood. They have to do this because of all the blood they remove to run tests with, and he can’t produce blood at a rate that keeps up with their incessant want to test and check and test and check (It really is important that they do these things).
Another three days pass, and Jack has been moved from BiPAP to CPAP, this machine just supplies a constant positive pressure to his nose, allowing him to breathe for himself with the assistance of not needing to struggle whilst breathing in. We’re eagerly watching the adjustments on the oxygen blend and pressure coming down, as the nurses seem to think he’s struggling to breathe less. His feeds are also starting to increase, I forgot to mention that, because he is so young, currently about 29 weeks gestation, his sucking reflex hasn’t developed yet. (that comes in by week 34 USUALLY) so they have to feed him by Nasogastric tube which is a thin silicone tube which runs down the babies nose and into their stomach.
At 25 days old, Jack was removed from his incubator as it was no longer necessary to keep him warm, and he was doing a wonderful job of managing his temperature himself. He was moved into a Babytherm, which is like a sports convertible incubator, It has all the functionality of an incubator, with the added bonus that its an open top, and we can get to hold his tiny almost transparent hands without going into an incubator and letting the heat out. He really is coming along nicely now, he’s starting to look more like a baby than a medical experiment on a shaved capuchin monkey.
Jump ahead to 31 days old, and we’ve been moved from the ICU to the baby HDU, these are a lot less like hospital wards, and more like a well monitored and supplied crèche for early babies than a hospital. We arrived there in December, and they’d put up a Christmas tree, and made the windows look like they were leaded and covered them in spray on snow! I learned how to feed Jack using the NG tube and a syringe, I even passed the NG feeding test (who even knew that was a thing?) Also, the shock of having this tiny miracle baby was starting to wear off, and we became aware of other parents in the NICU. I don’t mean we were the only ones there to start with, but I felt like my focus was drawn 100% to that little miracle in the cot before me, and didn’t pay much attention to the other folk. They probably had similar thoughts as it can be very stressful at times and a new premature baby can be very distracting! We got talking to some folks in there, and they all have amazing, sometimes heart-breaking, stories. But those stories are for them to tell.
At 8 weeks old, Jack was given his 8-week jabs, they gave him a cold, and being a premature baby with a current gestation of 36 weeks and chronic lung disease, it really knocked him for six! We were both called on our mobiles at 2am by the NICU but the phones were on vibrate, so we didn’t wake up in time. I checked my call log when I’d come round and immediately called them back. It turns out that his cold was very serious, and they’d had to move him back into the ICU and put him back on CPAP for 12 hours, he was then returned back to high flow oxygen, which is administered through nasal prongs. It didn’t bother Jack one bit, He’s a very positive baby and didn’t let that illness set him back!
On the 29th January, 72 days old, Jack was allowed to move from the HDU into the Nursery, If I thought the HDU was an improvement on the ICU, it was almost the same jump again. To me, this room was almost home, metaphorically and physically. I knew the next step from here was his own little cot at the side of our bed. But that’s coming later…
In this room, there was no bonging noises from the alarms going off on the screens, or whistling and whooshing noises from the respirators and ventilators. This room was relaxed, and peaceful. Jack has gone from strength to strength on his journey so far, we’re so pleased and proud of him to have made it this far with almost no problems. HA!
I was wrong, we have encountered one problem that has stuck with us, past the HDU, past the Nursery, and we’ve bought it home since…. FEEDING!!! Laura and I have had many a sleepless nights over this little sod’s refusal to drink. But I digress…
After moving into the Nursery, we lost the big monitoring screens that measure heart rate, blood pressure, oxygen saturation and breathing, amongst many other things I couldn’t even guess at! He was loaned a tiny box that just measured heart rate and oxygen saturation, which was measured from one sensor on his wrist. He was also evicted from his Babytherm GTi cabriolet, and put in what can only be described as a transparent tiny bathtub fixed to a 1970s television stand with doors! This was a comedown to Jack, and mainly myself, who being 6’ 3” and having a bad back struggles to bend down low enough to change his nappy, or pick him up, or even… anything! Anywhoo, We’re all getting along nicely, making friends with other families, and just as we’re getting good friends with them they’d leave. This happens a lot with a very early babies I’ve been assured, they always spend longer in here than most.
3 days before his discharge, Laura (and myself) were asked if we wanted to stay in the discharge flats to get a feel for life with a baby (which are quite literally almost self contained flats). Laura jumped at the chance, but being a proud (and sometimes annoyed, disgruntled and gobsmacked) owner of a cat and dog I had to decline as animal duties are also important. Jack was the perfect little baby in the discharge flats, and had no worries.”
So that was Jack’s NICU journey from Andrew’s point of view. The last blog from his series will be a short one about Jack’s homecoming which will hopefully be up next week. You can now follow Jack’s journey Beyond the NICU on Facebook, find us on Instagram with the username @lauralorelle and on Twitter with the username @PurpleIsis.
Please also check out The Smallest Things website for updates about the Extend Maternity Leave For Parents Of Preemies petition as it’s being debated in Parliament on 16th December 2016.