After the tears in the bathroom we kind of just had to get on with things. Not to say that in the following four months there were no tears but it was definitely too busy to think and that wasn't such a bad thing.
The evening after Sascha was born I got to hold her again. It was so difficult. She seemed so absolutely breakable and anytime she was layed on her back her breathing was intensely laboured as her tongue would fall back over her airway. Eventually the midwife put up a privacy screen around us and we managed to have some skin to skin. I pulled my arm out of my shirt and slipped my bra down. We then lay her on my chest so she could be face down. It was hard to see her but it was so nice just to feel her. I don't think we stayed that way for long. I was nervous every time her machine beeped as that indicated her oxygen levels had dropped. I loved holding her but I was a lot happier once we put her back in her box on her tummy. At least everything was then under the midwife's control.When we got up the following morning there was a message to say that Sascha had been moved. We had so little control over her. It was a long time before we would even pick her up without asking a nurse first to make sure we wouldn't hurt her. I those first days Sascha seemed to have every test under the sun. She had a brain ultrasound, a heart ultrasound and a kidney ultrasound. The only thing that came back was that her kidneys were slightly small. She also had her eyes tested and we found out she was very myopic. At the time we didn't know this was going to be a significant part of her later diagnosis. She also had a chromosome test which, thankfully, came back clear. That was the test that we were really waiting with trepidation for. It would have meant severe learning problems and a gamut of other issues. We breathed a sigh of relief and waited to see what would happen next.
Sascha's breathing didn't get better and her poor little knees were rubbed raw by being constantly on her tummy. The answer was a nasal pharyngeal tube or NPT. This was a tube that was pretty forcefully pushed up her nose. The tube then ran up her nose and down the back of her throat, keeping her tongue from falling over her airway. It wasn't a pleasant thing to watch it going in. I watched them being put in a couple of times. Craig didn't want to see and I fully understand his choice. I think Sascha ended up having 4 of them put in. Her gorgeous face was then covered in a huge amount of tape. They did not want that tube coming out or even moving as it would be very uncomfortable for our girl. This did mean it was very rare for us to see more than about half her tiny face.Not long after the NPT was put in we got moved from PICU (paediatric intensive care) to Rose Ward. This would be Sascha's home for the next four months, though, at this stage, we thought we'd be out in two. Sascha had been through all of this in less than a week. The NPT was keeping her airway open but it was also the reason we couldn't take Sascha home. Once the tube has been put in it is the only airway and if it gets blocked there's obviously know way for the air to get in. She had to be constantly monitored and was always connected to a machine that monitored her oxygen levels via a light probe wrapped around her foot. In addition to this she was also in a room that had two nurses and only four babies. If we heard her tube gurgling at all her nurse would come over, take the filter off the end of the NPT and use a smaller tube to suck out any mucus trapped in the NPT. The nurse would plug the smaller tube into a long tube that was connected to a valve behind each cot that was continuously sucking. Thinking about it I have no idea were the suction came form and were all of the mucus from the ward went. If there are any nurses out there reading this please enlighten me.
Once we were on Rose Ward our weeks became routine surprisingly quickly. I booked poor little Huey into childcare on Mondays, Wednesdays and Fridays. One more day than he was previously doing, which I don't think he was terribly impressed about. I would then visit Sascha every Monday, Wednesday and Friday by myself and Craig would try to get in most of those evenings. Craig spaced out is holidays so he had every Tuesday and Thursday off instead of taking off the three weeks he was planning to so he did get in those days. Huey and I would stay home on Tuesdays because I needed some space from the hospital and because he needed some Mummy time. It wasn't easy to find a good balance between the kids. It was hard to take Huey in as he only wanted to sit for about two seconds. I could never take him in by myself and when we did take him in one parent was on the ward with Sascha and one was on the playground with Huon. We were never really together as a family until Sascha came home. We really used our family to the fullest and so many thanks need to be sent out to Bev and Carol (Craig's mum and mine). Once Craig had to go back to work we booked Bev in to visit Sascha every Tuesday and Thursday as it was too hard for me to get in with the little man. I have so much gratitude for Bev to take this on but I am also sure that nothing pleased her more than when we asked her too. She would do anything and everything for her littlest granddaughter, as she would for all her grandchildren, and her love for them all is boundless. Craig would always go in those evenings that I hadn't been in during the day and tried to get in as many evenings during the week as he could. Mum would often meet me in at the hospital after school so she could get in as many cuddles as possible. Mum didn't get to see Sascha quite as much as she would have liked as we relied on her to look after Huey quite a bit. I think in the end there was only three days, over the time Sascha was in hospital, that she didn't get to see at least one family member.
Other than finding a balance for our lives and the kids we were also challenged trying to get Sascha to feed. Because of her cleft she would never be able to breast feed. We had to learn how to use a squeezy bottle and so did she. A squeezy bottle is basically the same as a normal bottle but it's, obviously, made of a softer plastic so you can squeeze it to get the milk to come out. Kids with a cleft can't get any suction on a bottle as they can't close off their mouth to form the vacuum needed to draw in the milk. So squeezing the milk out of the bottle is the only option. It takes quite a bit of practice and I seriously thought I would never get the hang of it. You have to squeeze enough to reward the baby for effort but not so much that they can't keep up. For all of the time she was in hospital and for a long, long time after we took Sascha home she was mainly fed via a nasal gastric tube. With that we could by pass all the needing to swallow malarkey and get the good stuff straight into her. It obviously worked a treat as she gained weight beautifully.
We checked out a week before Sascha was four months old. We went home with a nasal gastric tube still in and with her needing to constantly be on a little bit of oxygen. Our time in hospital really opened our eyes to what is constantly going on. We're out of that situation now but I still think about all the people who are just starting out their hospital journeys. I also think of all the other babies and parents that we met while we were in there. I see some of the mums around when we go back to the hospital for appointments and we try to quickly catch up in waiting rooms and corridors. There's still a few of them who have simply moved from the infant ward to the paediatric ward without any knowledge of when their kids can come home. I still can't say we're lucky. Lucky would be not having to have stayed in hospital beyond the norm but we certainly aren't even close to being the worst off.
