Sascha's Trip to Hospital - Part 2

Just to begin with I have a huge amount of respect for those of you who have had to go through multiple hospital visits. In the end it was the stay in the ward that got to me. To stay in a room with four recovering infants is a trial in patience that I failed!

The first night we were on Newland Ward the night actually went quite well. Sascha was still on sedatives so she actually slept, even though she went down pretty late. The other three nights were terrible. That first night had given me a false sense of hope.

I've left it a bit long to do this section and I've lost a bit of the time line so I'm going to break this up into Things that were Terrible, Things that were Marvelous and Things you May Want to Consider when going to Hospital.


Things that were Terrible

I'll get the whinging section over and done with. Basically the sleeping arrangements were ridiculous and yes I know it's because of cost and staffing and space but it still was. We were in a room with three other babies and two other mothers rooming in. One of those babies was basically inconsolable and while I felt absolutely and exceptionally sorry for him, he was separated from Sascha by a foot of space and one curtain. I couldn't be angry at him but I certainly was at the situation. There was no way that Sascha was going to sleep with him that close. The only time I could get her to sleep was when one of the nurses took him out of the room.

It was also impossible to keep Sascha to her routine. She was a dreadful sleeper and we've worked really hard to get her into a good sleeping pattern. The down side of that is that when we don't stick to it she gets really upset and very difficult to settle. Sascha goes down at 7. The lights rarely went out in our bay before 9 and most of the nurses didn't keep their voices down until 10. By this stage Sascha was often so overwrought it would take at least an hour after the room was quiet to actually get her to sleep.

There were a few other medium level annoyances to our sleeping. A lady got a phone call at 4am two mornings in a row. I kept feeling totally helpless. The lady who got the call was from overseas and it was obviously a call from her husband. I couldn't really tell her off, especially as she was crying during one of the calls, but then Sascha would be awake for another hour and me with her. Someone also had their tv up way too loud for that time of night and for such a small space. There were people visiting with young kids til quite late and, of course, young kids aren't going to keep quiet even if there are people putting babies to bed. I really don't think we got more than 5 hrs sleep each night and those weren't continuous.

The whole thing was all the more frustrating because it all seemed totally avoidable. The night in PICU was always going to be bad. Sascha was going to be in pain and she wasn't going to sleep but if it was quieter on the ward she would have. The problem is that the only way it could be quieter for babies on the ward is if all those with children under a certain age have a room of their own and that just isn't going to happen. It's bad enough for us parents who aren't going to get enough sleep to coherently deal with doctors the next day but most of the time during the night Sascha was also very upset. She was tired and sore and couldn't sleep because others kept waking her up and a 14 month old can't understand why a parent can't fix all this. I've been trying to think how to say this without sounding pompous so I hope this comes out right. I really think that the situation was unduly stressful on both Sascha and myself and that it is important for a child recovering from an operation to be in a calm, pleasant and especially restful situation during recovery.

I continually felt like I was trapped by the situation. I didn't really have anyone to complain to because it wasn't really any one's fault but I also wasn't coping with Sascha's distress and my own exhaustion. By the last night I just sat in the play area for ages with Sascha because it was the only quiet place I could find. She wouldn't sleep there but at least she was settled. Hopefully for those of you heading in I just got a bad run with a sensitive child but I'm not sure that's the case. I also want to reiterate my earlier respect for those of you who go through all this multiple times. At least while I was pacing the halls I could think this would be our only stay in hospital. Hopefully.




Things that were Marvelous

I was so happy with Sascha's recovery. By two days after surgery she was only on Panadol and had had the drip removed. She was eating at least a little at every meal and was taking quite a bit from the bottle. She mainly lived on yogurt for the first couple of days but by the time we went home she was eating any mashed food I'd offer. I also couldn't believe how happy she was. She basically started walking while we were in hospital. I was worried that the trauma would change her beautiful personality but she was back to her cheeky self within a couple of days.

On Newland Ward there is a fantastic toy area filled mainly with toys for the toddler age group. Sascha was in heaven. We were in over the weekend so all the battery toys were locked up but the play coordinator gave us some when we got there on the Friday afternoon and there was a massive amount of non battery toys left out all the time. We spent most of the waking time in the play area as our four by four metre bay was not enough to keep the girl happy. Sascha's arms were in splints to stop her from putting her fingers in her mouth and ruining the surgery but there was no way that was going to stop her from playing with all the new toys!

Going to the parents room was a good idea. Every time Sascha slept I would head down there for a coffee. I always loved it when it was empty as it was the only space where I could really be alone. But, that said, it was always good to talk to other parents. It gives you some perspective and we were all in the same boat. We'd actually end up smiling, slightly, about things that five minutes previously we'd been pulling our hair out about. I also ran into the wife of an old work colleague and got to talk to her about our similar experiences with our kids. That's Adelaide for you!

The support everyone offered was also marvelous. I have a great friend who lives much closer to the hospital than us and most days I'd go there to have a sleep and a shower. It was great to have a place to go outside the hospital and have someone to chat to and, let's face it, whinge to when needed. Another very good friend visited so I dumped Sascha in her lap and got to go and have some breakfast and make some phone calls to family. She also brought me chocolate which should not be underestimated in importance. Craig's mum was invaluable. She brought in meals, looked after the girl so Craig and I could have some time together and was simply there for us. And I can't forget my mum who made sure my little man was happy and totally looked after while I was away. I didn't see Huey for 5 days and it was good to know he was with someone who loves him at least as much as I do.




Things you May Want to Consider when going to Hospital

I know there's a few of you out there on your way in for a similar surgery to Sascha so these are the bits you may want to know.

Firstly I totally got the clothes I took in for Sascha wrong. I took in grow suits that would open all the way down her legs because I was thinking about an oxygen probe on her toe but it was actually the splints I should have been thinking about. We ended up cutting a couple of inches off the sleeves of a couple of cheap jumpers I had taken in and that worked beautifully with some tracky pants. You can pick the jumpers up at Big W for $5. Any short sleeved t-shirts would work if the sleeves were wide enough but the jumpers just meant she had a bit more warmth on her chest. I also had her sleeping bag with us which worked well. She's a wiggler anyway and the hospital blankets just wouldn't stay on her, especially with the splints.

Hospital coffee is terrible! I took in some real coffee bags. They're basically like tea bags but with coffee, obviously. They weren't cheap but man, I needed them. If coffee or tea is your thing take some in from home! Just on food it was great having Craig's mum bring us in some meals. It meant we weren't just living on cafeteria food and it obviously saved us some money. It was also good that Craig's mum came in with the food and could sit with our girl while we ate. When we were in hospital with Sascha when she was born she didn't know if we were there or not. As long as she had a nurse she was fine. This time she wanted someone around that she knew all the time. It's fair enough but it did mean that the times I was in by myself I couldn't leave Sascha alone and you're not allowed to have hot food or drinks outside the parents room for obvious reasons.

We also worked out that we were better off bringing in Sascha's own formula and bottles. They had pre-made stuff in there but I really don't think she liked the taste. It certainly smelled different. We also should have worked out her food earlier. I thought they had just forgotten to order for her but they had baby food in the fridge for her. It didn't really matter as she was only eating yogurt at that stage. We also eventually worked out we had to order her toddler meals each day if we wanted them, though I think she probably should have stayed on pureed baby food a little longer. Obviously I'm still unsure about this so check it out with your nurse. We did take in some baked beans as they're her favourite food. The idea was she'd eat better if she was familiar with the food. She did eat well so this may have worked. Something to think about if you have a fussy eater.

I think that's all the advice I can think of. Like I said earlier it was great to have a place to go away from the hospital. Also use everyone you have. If you can organise friends to come and sit with bubs so you can have a break, then do. Oh, and I also ended up getting Sascha a cheap portable DVD player which saved my life! I couldn't go to the kitchen to get her a bottle without her screaming but if I popped her in the cot with Waybuloo on it'd get me the ten minutes I needed.


In the End

I can honestly say I never want to stay on a ward again! It was certainly difficult but it has given me an appreciation of what others are going through. I made it through my 5 days knowing it was only going to be 5 days but there are those who will have to go back over and over again and if that's you you're a better woman than me.

Sascha is doing so well now. She's smiling and laughing. She's starting to talk and actually said daddy for the first time at midnight last night. It's been a ride I'll never forget but one I am severely glad is in the past!


The End

Sascha's Trip to Hospital - Part 1

Our past week is definitely going to take me more than one go at blogging but I thought I'd better get started. I'm never going to have enough time to get it all done at once so here's the first instalment of Sascha's operation.

After a few false starts Sascha finally got in to have her cleft palate repaired on Thursday, 3rd of June. We left home at 6am as we were meant to be at Day of Surgery Admittance (DOSA) at 7. We checked in and then kept Sascha happy for the next two hours before the doctors called for her at 9. She was weighed, her temperature taken and put in a fetching green hospital gown during this time. I also filled out all the same paper work I had filled out the week before when her surgery got cancelled.

The nurses took us around to another waiting area right on 9 o'clock. There I gowned up in my lovely blue suit, including shoe covers and hat. Craig remained in the waiting area while I went in with Sascha and the fantastic anesthetist to theatre. We were very lucky with our anesthetist and I can't even remember his name. I didn't realise that the anesthetist would be so involved with me as well as Sascha. He was the only doctor I got to see before the operation and certainly the only one I talked to in theatre. He was very nice and explained everything we were doing as Sascha went off to sleep. I held her as he slowly brought the mask closer to her face and we sung Twinkle Twinkle. First he just wafted the sedative towards her. He then brought the mask right onto her face when she was settled. He explained that Sascha would have a few involuntary movements while the drugs kicked in so I held her tightly through this. When Sascha was totally out to it we put her on a little blow up mattress on the theatre table. This had warm air constantly blowing through it during the surgery. The nurse had to remind me to give Sascha a kiss before we left her and as we headed out she offered me a tissue I didn't need. My way of dealing with all this was to focus on exactly what needed to be done at each stage. The tears waited til later.

Craig and I had a bit over two hours to wait until Sascha would be brought to Paediatric Intensive Care (PICU). Usually babies who are having a cleft palate repaired go straight onto the ward but since Sascha's was connected to Pierre Robins they like them to have a bit more care. Closing the cleft can bring back the breathing issues they had when they were born. Craig and I ate, paid our car parking for the week, called our mum's to keep them in the know and then still had to spend about an hour killing time. The nurse came and got us from the waiting room a little earlier than usual as Sascha came up fighting. Last time she had a general anaesthetic she woke up badly too so we shouldn't have been surprised. She was pretty much in the condition I had expected. She basically looked like someone had given her a decent punch in the face. Her nose was dripping blood and she had bloody spit coming out her mouth. Her mouth was also damaged by what ever they use to keep it open during surgery so she even had a fat lip. Our little boxer! She was connected up to a drip, for morphine and liquids, a heart monitor and a pulse/O2 level monitor. Even though they had her on morphine she wouldn't settle for much over half an hour and only in our arms so they upped her morphine and gave her a sedative as well.



They also found Sascha's oxygen levels were a bit low so they put on O2 nasal specs. Unfortunately she was badly allergic to the tape they used and her entire face went slowly red. I did know she reacted to some tapes but she had only ever had small reactions and only at the sight of contact. The nurse got the ward doctor to have a look at her and, once he had determined it wasn't the morphine she was allergic too, we simply took off the O2 specs and she did fine. It's taken her more time for the redness to go from the allergic reaction that it has for her to get over the operation. Craig's mum came in in the afternoon so Craig and I could go and get some tea and because she really wanted to see our girl. It was great to have everyone on board during our time in hospital and great to know we're part of a family who are there for anything any of us need.

By the time Bev and Craig went home I was getting Sascha to settle in her cot for about an hour at a time. PICU doesn't have beds for parents so I was trying to snooze, in between her wake ups, on a recliner. At about 11pm a nurse noticed how little sleep I was getting and how much Sascha wanted to be right with me so they took out Sascha's cot and brought in a bed. Sascha and I then snoozed together for the rest of the night. We really only slept for an hour at a time then she'd need me to rock her or give her a pat to get her to resettle. The night actually went quite quick. I was so tired myself that I slept at every opportunity. By the morning my right side was dead as I could only lie facing her. There was no room to wiggle and she's such a sensitive sleeper she'd wake any time I moved anyway.

I still hadn't cried at all through the first 24hrs. Craig and Bev had both had a few tears but I just couldn't. Sometimes I feel like an insensitive sod as Sascha's distress doesn't really take me to tears. It's not that it doesn't upset me it's just that I can't get that emotional about it. I'm more a crier when I feel impotent or frustrated and at this time I had a clear job to do. Maybe I should think of myself as practical rather than unattached to Sascha.

Craig got in to the hospital early Friday morning. Once he had settled in I headed to a friends to have a sleep and a shower. It was great to have somewhere to go outside of the hospital just for some down time. There is no way to get any time truly alone when your are in the hospital. By the time I got back Craig, Bev and the nurse were moving Sascha onto Newland Ward. Our girl had done so well! The operation went well and now we just had to get through four days in a room full of babies.

to be continued...

One for Huey

Looking back on my few posts I've realised they're all Sascha! So here's a photo blog of Huey's birthday.

Birthday Morning: We had already given him his bike, as he chose it and then we couldn't get it back, but of course Craig and I are softies so we had got him some more things to open in the morning. To every one he said, "that's just what I wanted." I suspect my mum had taught him to say that but he seemed genuinely chuffed with everything.

Birthday Lunch Time: Ba (paternal grandma) came over at lunch time to help us get ready for Huey's minor party. His major party has been postponed. Ba had brought more presents. Dinosaurs and super heroes were going down well by this stage. We then spent the arvo at Mitcham buying provisions, Huey playing on Squirt the Whale and Huey having a fancy baby chino with Ba.



Birthday Night: All the SA family made it for pizza at our place. There were heaps more presents and Huey spent most of the night as Buzz. We had pizza and, Huey's favourite, garlic bread.














There was also white chocolate mud cake. It was a pretty healthy night.
































Just as at the end of any good birthday party Huey finished up with a vomit in the kitchen sink and a little lie down on the couch. All said and done it was a pretty good birthday and he hasn't even had his super hero party yet!

Happy 4th Birthday my gorgeous man!

What a Blog of a Day

Today started as any of our other hospital days except Sascha and I weren't to come home tonight. So what went wrong?

We were packed and ready to go well before we needed to leave at 9am. Sascha slept beautifully in the car. We got a car park relatively easily and cruised into admittance right on 10. We then just had to keep the girl happy until her surgery at 2. There's heaps of toys in the waiting area and Craig and I were playing tag on keeping Sashi happy. We'd filled in all the forms and were ready to go. Unfortunately Prof David came in at 1.45 to tell us it was likely our surgery wouldn't happen. The surgery in the morning had turned out to be more difficult than thought and the neurologists were having some trouble. He told us to hang on for half an hour and he'd see what he could do.

An hour later Prof David came back with the good news that her surgery would be done. He was going to have a cup of tea while they cleaned the theatre and then we'd be in. He returned at 4 to say that it was definitely off. Talk about a roller coaster day! One of the cleft palates that had been repaired in the morning had begun to bleed so they, obviously, got priority on the theatre. The nurse in admittance took us to the day surgery ward and got Sashi some custard and formula as she hadn't eaten for eight hours by this stage.

And now we're home again watching mind numbing tv to try to take our minds off it all. We're hoping to get in next week as the theatre is free but they're short on intensive care beds so it's a bit unsure. The other problem with next Tuesday is that it's Huey's birthday. I think we'll move his birthday to Monday. He won't know the difference.

I'm hoping to get through the week with my sanity intact and without unpacking my hospital bag. The chances of either of these happening is pretty much nil!!!

What an Interesting Day

How many appointments can we fit on one day? Yesterday it turned out to be four!

Our morning began with a viewing of Huey's primary school and it looks good. He won't be going there for another year but it was great to hear that their teaching ethos closely follows mine. The school is pretty big, which worried me, but they do have a good reputation and the talk the assistant principal gave impressed me. It was a bit of a pity that we had to leave after an hour as we didn't actually get to see around the school but the afternoon was filled with Sascha!

So after the talk we dashed home to give Sashi a sleep and grab some lunch. I then ran Huon over to Ba's (translation- Grandma's) so we could concentrate on the girl.

Sascha had three appointments, all to do with her impending palate surgery.

The first appointment was with a Craniofacial Fellow. He quickly went through Sascha's surgery and what to expect post surgery. Sascha will be in hospital for four to five days. For the first couple of days she will have an IV in so they can easily administer morphine, when needed, and liquids, while she's not feeding properly. I didn't previously realise but she will have arm splints on not just in hospital but for a week after she comes home too. It's to stop her from damaging the surgery but I have the feeling she's not going to like it much. There is also a risk that the surgery won't quite work and that she will still have a small hole which would need to be fixed at some later date. When we saw Prof David David he said cleft looked quite easy to fix so, hopefully, we won't need to be back in surgery. That said there is also a risk that fixing the palate will stunt the growth of her upper jaw and she may need to have it broken and reset in her teens. Not a pleasant idea but one we'll face when the time comes.

Sascha's second appointment was to have photos taken for the surgery. It turned out to be incredibly easy with our little poser. Our only problem was finding the right room in the rabbit warren that is the Samuel Way building of the WCH.

We then had to run to Sascha's third appointment in Kent Town with the Craniofacial's ENT. After rushing to get there we were quite early and sat around in their nice waiting area. I even managed to read an article. The ENT was great. Craig failed the test of holding Sascha still during the examination so I got to lie on the dentist like chair and hold Sascha on my chest. In the end Sascha had cleared her own ears of the fluid that was sitting in them so no grommets are necessary. It's nice to find that we have avoided an unnecessary procedure, even if it's a minor one.

After her big day Sascha was tired and grumpy but, of course, she only fell asleep five minutes out from Craig's parents place. Huey woke her up when he came running out to greet us. We then spent a pleasant evening there. It's always nice to have dinner cooked for you.

After yesterday I am really ready for Sascha to have her surgery. I keep putting off jobs that need doing because so much of my brain space is taken up with it. I also just want to get it over and done with. I am worried about putting our happy healthy daughter through at least two weeks of strife even though I know it'll be better for her in the end. I was watching her laughing in the bath this morning thinking about bathing her in two weeks time. How long will it be before she's just sitting by herself in the bath playing again? I just don't know.

People quite often tell me that they don't know how we do it or that what we've been through is more than they could imagine. It's nice to hear as it gives me validation for the days when I'm feeling like it is all too much but don't sell yourselves short guys. All parents go through things they never thought they would have to cope with. From immunisations to our kids first broken heart we feel their pain and we get frustrated with the world for not seeing their frailties and beauty. As with everything kids go through all we can do is be there when they're hurt and offer support when they're willing to take it. Kids will always give parents a rough time. I guess that for the next four weeks it'll just be a bit concentrated for us.

Overexposed

Thankfully the Mums in the Window chapter has closed!! I did my stint then ran off to have lunch with my friends. I think I'd blocked it out in the lead up and, as such, the day finally arriving came as a bit of a shock. When I got to the shop I changed and had heels and feathers thrown at me. I was suddenly thrown in a window with a TV camera in my face. It was then all a blur of adrenaline and false confidence.

And how am I feeling about it now? In one way it was a fantastic success. I raised just over eight hundred dollars for the Women's and Children's Hospital and I'm just one of ten women who put their bodies on the line. I'm also sure sure a lot went into the tins outside the shop. There was so many people who put in hours to raise as much money as possible. It's always great to be a part of something that comes together like that.

But for me personally? The best way to describe it is it's like having an emotional hang over. It's that feeling you get the day after when you remember how over the top you were and you also remember everyone else remembers too. People keep telling me "wow, I can't believe you can do that", and they really do mean it in a good way. But the more I hear it the more I think "well if no one else would do it then it must be something abnormal therefore I am abnormal" and, to be perfectly truthful, the feeling of being abnormal, or more specifically subnormal, is something I've been struggling with most of my life. I have always tried to put on a persona that is acceptable. It's only very recently that I have found I can be honest to people about my own feelings and beliefs and to feel that these are valid.

I have talked to many people about this feeling of never being real and I've found it's not really a unique thing. I think we have a tendency toward multiple personalities. There's a you at home, a you for work and a you for Sunday bests. It just depends on your function at that point in time. In the end I think having confidence in yourself is also having confidence in your friendships. It is beyond difficult to have confidence in yourself when you have no peer acceptance. Everything comes down to knowing that your friends will see you as you really are and your true friends will still love you anyway.

As an atheist I'm going to end on a rock n roll prayer:

I'm just a soul who's intentions are good. Oh lord, please don't let me be misunderstood.

Lenses, Beans and Yogurt

We had a couple of appointments at the hospital today. Well Sascha did and we were kind of obliged to go along with her. Her first appointment was to have her lenses fitted and to teach us how to put them in. I think they're going to work well for her but the process to get them in and out is a bit distressing for her. She mainly doesn't like being wrapped really tight and held down but she probably doesn't like the whole having something shoved in her eye bit either. She could obviously see a lot better. She was smiling at everyone!!!

I then dropped the boys off in the playground and took Sascha to her dietitian. I basically had to admit to someone trained in healthy eating that the only things our daughter will eat are baked beans and yogurt. I try really hard to hide lots of other things in her mushed up beans but it has to have a good scoop of those lovely little things or she won't touch it. After so long of not wanting to eat anything I'm just going to humour her for a bit longer. The dietitian, luckily, understood. She said to keep mixing in veggies and some meat as often as possible. I'm going to finish with a classic mother's lament:

"Why won't my children just eat and sleep? It's not that hard!!!!"