Have Toddler will Travel

Hello dear readers, I am missing you all, and missing keeping up with my blog whilst I am overseas. I thought I'd tell you a bit about how we did on the plane to get here.

Joseph and I are travelling alone, my husband is still at work whilst we're away for six weeks, hopefully this will keep him out of trouble for a bit! We left on an evening flight from Manchester to Dubai. We then flew Dubai to Kuala Lumpur and finally on to Melbourne. It took a little over 24 hours.

I did a lot of research about what to pack in our hand luggage. I had a Trunki case for Joseph filled with toys, special blankie and his beloved Teddy. I had a carry on bag with our mei tai sling, snacks, and his sippy cup. On the plane they provided baby milk and bottles. Joseph doesn't use a bottle now usually but he loved his milk in a bottle for take off and landing, so I'm grateful that had these on board. I've bought a new cup with a sucky nozzle for the return leg.

We had a bassinette booked, the airline did say in the UK that the weight limit was 11 kg, however in practise the staff do not like babies anywhere near this weight in the bassinette, so it was pretty useless to have this booked, as I had to fight for it onboard, and Joseph preferred to sleep on me anyway. I haven't booked a seat for him, as this would have cost 75% of the adult fare, and they have to be on a lap for landing, take off and turbulence, and all our flights have taken the gravel road!

The sling has been an absolute life saver. Although a big boy now, Joseph doesn't stand or walk, so without this I am not sure how I would have managed the long queues through check in and immigration. It's also helped Joseph to feel more secure as he is nice and close, and can look all around whilst still feeling safe.

It's been an adventure so far and an enjoyable one. Not too many tantrums and tiaras, and Joseph has had great fun meeting new friends and getting to know his grandparents again. And because the flight was so good, I am not dreading the return trip!

Tales of the Unexpected

This is my guest post for Savvymum4Autism's SpecialSaturday, please visit her blog! 

When I first arrived from Australia to Manchester in 2002 I really struggled to settle into a job. After six months I decided to return to my original career of caring for adults with disabilities. After a little while, my agency told me work was drying up, and would I work with children. Children? I wasn’t really sure about it, but my manager reassured me that they were just adults in miniature and I’d be fine!

I had a number of children under my care, and one day I was asked to work with a little boy we’ll call Max. Max had gone through three agencies, in our agency I was carer number 7. He was described as challenging and difficult. I decided I’d give Max a go and take him as I found him.

Max was different. Full of life, very quirky, and not prepared to be sat in a corner, for Max, life was for living. He had no fear, and we had adventures! He loved to play games, to read books, to snuggle under a duvet and “talk” although Max had no real words at 7 years of age.

Everything was going fine until one day I was in the front room. There was screaming, tears and tantrums. I was terrified. 

Max’s dad came storming in, saying “what has Max done”, he ran in to find me in the corner in tears. Max had his arm around me patting my head. There were four birds of prey circling around my head (ok 4 cockateils sitting on the curtain rail). I do not do inside birds. At all. Ever. 

Max had immediately recognised my distress and stayed by my side comforting me until an adult could come and fix the problem. 

I wanted to share this story because, like many people, I had a perception that children with autism existed in a bubble, and didn’t really know how to react to emotions and to deal with others in distress. And whilst some children with autism are perhaps more like my stereotype, we need to be very careful with labelling and with our expectations. Each child is an individual, regardless of the label they may have been given.

What Having a Premature Baby has Taught Me

I've been trying to look at the brightside this week, with a bad consultant's visit with Joseph on Wednesday and the resurfacing of feelings of guilt that he was born early. I'm not wishing a premature baby on anyone but here are today's thoughts.

• I have a wonderful, huge community of mummy friends from all over the world. I never would have met such amazing mummies and babies had it not been for Joseph. 
• I've learnt that all mothers feel the same, mums of premature babies, of babies born with illness or defects, mums of normal term babies, we all feel overwhelmed and a deep sense of responisbility. And we're all rather scared.
• I have learnt patience. I have sat by an incubator watching a baby, who should have still been inside, learn to breathe on his own, learn to feed. I have watched a small boy eat peas with his tiny fingers. I've watched my small boy learn to crawl and to pull to stand. Each thing has taken so long, but he has got there.
• I have learnt to deal with doctors, with the public, with well meaning friends. I have learnt to advocate for my baby and for myself. I have learnt the "smile and nod". I might need to approach the NHS for chiropractic treatment on my neck for RSI from repetitive nodding, however.
• I've learnt to smile. Even when my heart was breaking, I learnt to smile, and to hope. I've learnt to laugh when things go right, and laugh when things go wrong.
• I've learnt to believe and to trust, even when all hope appeared to be gone. And I've learnt that prayers are answered. Not always the way we expect.
• I've learnt to laugh, at my little boy, at myself, and at life in general. Sometimes to laugh is the best thing to do. Sometimes its the only thing.
• I've learnt to cry. Deep sobs, at injustice, at grief. And not self indulgent crying. I've shed tears for babies and mothers I've never met. I've shed tears for doctors standing in corridors with head in hand wondering what to do next. I've cried like I never have before.
• I've learnt that life is deeply unfair. It's a fact, and its our responsiblity to form communities, to help those for whom life has been so deeply unfair.
• I've learnt that you can go to Toys R Us and spend the GDP of a small African country on toys, or you can find an empty plastic bottle and put some pasta in it, and give it to your child.
• I've learnt that a scarf can be used to wipe a nose, wrap a baby in, or play a thousand games of peek-a-boo.
• I've learned the kindness of strangers, and the judgement of strangers too. I've also learnt that the toddler years can't be too bad, as old ladies have no recollection that their toddlers were unholy terrors and its not just yours! Or they are so bad that the amnesia never goes away!
• I've learnt how to hide vegetables in almost anything! I've learnt that no matter how good you are with weaning, there will come a time when vegetables are perceived as offerings from the antichrist and all you can do is make them disappear.
• I've learnt that a small baby can produce an alarming amount of wee, poo and vomit. I've learnt to deal with cloth nappies, and with vomit sodden clothes. I've learnt cycles on my washing machine I never new existed.
• And ultimately I have learnt true love. It's a cliche, but I never understood love until I had my baby. I couldn't hold him, but I felt I was in my heart. When I looked at that tiny thing, my heart began to live outisde my body.

Going Home on Oxygen

 My good friend Kylie (and mother to Joseph's best male friend!) has agreed to share her story of coming home with her baby on oxygen. It is quite common for a premature baby to come home on oxygen, and whilst it appears daunting, it doesn't have to be a nightmare, as Kylie's story shows. 

From the moment that Llewellyn graduated to SCBU from NICU, I had an inkling that he was going to be coming home on oxygen. After the move, I watched as his oxygen requirements went up and up as he struggled to breathe on his back. 

To reduce the cot death risk, babies need to be slept on their backs, however, as the majority of the lungs are in a person’s back, babies with lung problems find it easier to breathe on their tummies. For this reason, they are cosseted a little while in NICU, being allowed to sleep on their tummies. Cot death isn’t as big an issue because the babies are hooked up to a large number of monitors. Once they are in SCBU though, the focus shifts to getting the baby ready to go home, and this includes getting them used to sleeping on their backs.

So, back to Llewellyn. We had been told that he may be coming home with us in three weeks. I also figured that if that were the case, it would take some kind of miracle for him to escape coming home on oxygen because of the levels that he currently needed. I immediately started worrying. We have stairs in our house – the bedrooms are upstairs and the living area downstairs. I was envisaging myself carrying my tiny baby under one arm and lugging an enormous oxygen cylinder (the ones they have in hospital) under my other arm, going up and down the stairs all day. I wasn’t looking forward to it.

I expressed my concern to one of the nurses in the hospital and she was brilliant. She reassured me that no, I wouldn’t be lugging a cylinder all over the place. We would instead have a grey box (a concentrator) the size of a dustbin installed in one of our rooms. Connected to it would be enough tubing to reach all over our house. The concentrator runs off mains power and it works to convert air into pure oxygen. The nurse then hunted down a copy of the Bliss publication, ‘Going Home on Oxygen’. I read it cover to cover and it answered a lot of my questions and reassured me a lot.

As it came closer to discharge, our nurses were very good at preparing us for dealing with home oxygen. They showed us how to change Llewellyn’s nasal cannula (the plastic tubing with prongs that is hooked up to the oxygen). As Llewellyn became more stable, they also encouraged us to take him for walks in the hospital grounds. They showed us how to disconnect him from the wall supply and to connect him into one of the hospital portable cylinders. While the hospital cylinders were different to what we would be using at home, it gave me the confidence in disconnecting him from one supply and connecting him to a portable system. It was also a fantastic experience – a chance to have my baby to myself!!!

Three days before discharge, the oxygen man came around to our house to inspect it to make sure that it was suitable for oxygen installation (apparently if you live above a fish and chip shop, it’s too dangerous to have home oxygen – at that point I was very thankful that we didn’t decide to live in the flat above the cafe that we were considering!). He then installed the oxygen equipment:

-          The concentrator and tubing

-          The extra large back up cylinder should the power supply fail

-          Three mini portable cylinders and a regulator

He showed Drew (I was at hospital with Llewellyn) how to turn on the converter, how to check the meters, how to connect it to Llewellyn and also how to use the portable cylinders for when we went out and about. He left us with a lot of information, including a list of people that we needed to inform about having oxygen in the house. These included:

-          Our insurance company

-          Our landlord so they could inform their insurance

-          The fire brigade (so you are a high priority in case of fire)

-          The electricity supply company (so you are a priority if the power goes out)

Finally, it was two days before Llewellyn’s discharge and we were rooming in at the hospital. It was a wonderful feeling- to be almost on our own with our baby. I spent most of the first day just staring at Llewellyn, sleeping in his cot. The day before discharge we ran through a checklist of everything we needed to go home:

...car seat...check

...going home outfit....check

....muslins to stuff around Llewellyn’s head in the car seat...check

...portable oxygen cylinder....no!

Cue hubby’s mad dash back home to collect the oxygen cylinder.

The next day Llewellyn was discharged mid-morning. We had specially hired a car to get him home so that Drew would have the pleasure of driving his son home from hospital. Once home, we excitedly turned on the concentrator and carefully hooked Llewellyn up to the machine. We were so pleased! That afternoon, after we had had a chance to settle in, our neonatal outreach nurse arrived to check that the oxygen was all hooked up and then we were on our own!

Going to sleep that night to the steady hum of the concentrator (picture a steady shhhhhh clunk sound) I was ecstatic. My baby was home at last!

Over the next few days we became more and more used to dealing with the home oxygen, until, it almost felt like a normal part of our routine. There are a few stories that I would like to share with you.

Firstly, as I mentioned, when at home, Llewellyn was connected by metres and metres of plastic tubing to the oxygen concentrator. What no one mentioned to us was how the tubing could become a trip hazard. Poor Llewellyn was so good and very tolerant every time that I was carrying him and accidentally trod on his tubes, yanking his head backwards!

A week after we were home, I needed to take Llewellyn back to the hospital for a follow up eye appointment. I decided to take the bus, keeping Llewellyn’s protective germ barrier (the plastic rain cover) on him at all times. What I hadn’t counted on was the young toddler in her pram beside us. She loved babies and was very frustrated that she couldn’t see mine because of his plastic bubble so instead, she decided to yank his oxygen tube! The poor nanny looking after her was horrified when I pointed this out to her.

Two weeks after Llewellyn’s discharge saw us heading off to the home office to sort out a visa for him. We were planning on heading back to Australia for a holiday in a few months and needed to get his visa sorted in time. Everything was fine, until we went through security. The guard noticed the bag under the pram and said “all bags need to go through the x-ray machine!” He immediately pulled it out and placed it on the conveyer belt. I said “No – that one’s connected to the baby! It’s got his oxygen cylinder in it!” He was mollified and pulled it back off again very quickly.

We also didn’t let the oxygen affect our plans. After Llewellyn had been home for nearly three weeks, we had a wedding to attend in the country. Drew was to be a groomsman and we really didn’t want to miss it. We rang the hotel to confirm that it would be ok to have oxygen on the premises and then, when the time came, packed up Llewellyn complete with his oxygen, spare cylinder and sats monitor. He was an angel throughout the wedding – he slept pretty much through the entire thing!

 Llewellyn and Joseph - up to no good!

Managing Visitors

You've waited a long time to bring your baby home. Depending on your unit's visiting policy, you probably have loads of people eager to visit you and your baby. Usually, there are list of rules that you are given when you take your baby home the common ones are:

Minimise handling and passing baby around
Don't expose the baby to colds and flu
Ensure hands are washed before handling the baby
Don't allow the baby to come in contact with cigarette smoke, and this includes smoke on clothes

My good Twitter friend Jenny recently brought home her adorable triplets born at 28 weeks. She very cleverly designed a poster which she shared on her blog which she kindly agreed to me sharing with you. I think its a great way of getting the point across without alienating people (or alienating everyone equally!) Just click the picture so you can read it, and as a bonus, you get to see her three bonny babies, Calista, Eleanor and Tobias.

I think having something written makes it much easier to explain to people why we need the rules. It's very difficult for some people, particularly older people who may not have encountered tiny babies, why we have to be so careful, I think sometimes people think once a baby has come home they are "cured". Bringing home a baby in winter is particularly scary, as there are many bugs that to us can cause a sniffle or a cough, but to a tiny baby, can send them straight back to hospital, back on a ventilator.

In the first weeks, limit visitors. Ask people to call, text or email first and don't be afraid to say when a time is not convenient. It may seem mean, or controlling, but you have a responsibility to ensure your babies are safe, and continue to grow and develop well. Sometimes, you may risk offending people, but if they are people who really care about you and your baby, they will get over it!

Before you start allowing visitors, just be aware that you may get unexpected questions. My husband's older aunties were alarmed at Joseph's breathing, and it used to scare my elderly neighbour, I had never noticed that Joseph's breathing was loud and fast, to me it was normal! I used to struggle with the same aunties, who insisted on holding Joseph in a cradled horizontal position, which he hated, he preferred to be held upright. It's ok to explain the best way of holding your baby, you know your baby best.

The other thing you may not be expecting is unsolicitied advice, something common to all parents. It's very difficult at times to deal with, especially if you are doing things the way you have been advised by hospital staff. You can try explaining, or you can do what I did, and do a lot of the "smile and nod". And ignore it! Things like winding are passionate subjects, and everyone is an expert. Joseph needed a specific type of winding, but many people found it difficult to appreciate that I couldn't chuck him over my shoulder and tap him. If I did, I'd wear all the milk! And really, my fashion sense is challenged enough without having "eau d' baba vomite" down the back of my clothes.

Once your baby is older and stronger, you can encourage more visitors, and perhaps get out and about and show your baby off, but while you are going through the adjustment from hospital to home, its worthwhile to consider how you are going to manage, and how you are going to share information with your visitors.

And don't forget a huge bottle of hand sanitiser at the front door!

No Place Like Home?

This post is aimed at both parents bringing home babies who have been in hospital for some time, but also for those with term babies. The issues are similar. A baby who has been in special care has had all their needs met by a team of people, the world in the ward is very different to how it will be at home. A term baby has had all their needs met by mum in the womb, and the world in the womb is very different to world outside.

It’s so hard to communicate with a newborn, to understand what it is they want and need.  There are books, and organisations, and people who can help, but you do know your baby best, and you will work it out. It’s a bit like being in a new relationship, you are desperate for things to work out, and it will, but it will take time. It’s ok to feel like your baby is an alien creature with its own language, at times! 

The first big problem is feeding. Obviously in the womb babies are fed continuously. On the special care word its usually similar, a baby starts on continuous feeds and then its stepped out getting longer and longer. Whole books have been written on feeding, and there is no right way to feed your baby, I don’t care what anyone says. Your approach will be based on whether you are bottle or breast feeding, but it will take time to sort it all out. In the case of a premature baby you will probably be given a schedule and some idea of when and how much you should feed your baby. You may find that once you get home things go to pot a bit, and this is normal. There is definitely a settling in period. 

Sleeping can be a major issue. I found it really difficult at first, that Joseph slept so well in hospital, and at home, he just seemed to be not happy at all. He didn’t want to sleep in his cot, or moses basket, or even with us particularly. It was hard. In the end our special care outreach nurse, who visited regularly until Joseph had been with us a month, suggested Joseph sleep in his pram. It worked very well, until one evening Joseph aspirated on his vomit. Fortunately I heard him, and got him breathing again, but decided that this was a bad solution as it impeded his visibility to me, and it also meant it took me a bit longer to get to him. After that I worked harder to get him to sleep in his crib.

When a baby has been in special care, they are used to a lot of light, and a lot of noise. People manage this in various ways. I’m afraid that I made Joseph go cold turkey. I wasn’t prepared to have a light on all night, and I certainly wasn’t prepared to have “white noise”. One of my friends had a cd of running water, which would have driven me even more insane. Others have left the radio on all night, or static noise. I couldn’t sleep like that.  Over time Joseph got more and more comfortable, but I would say it took us about a month to get him to the point where he was content, self settling easily at night, and in a good rhythm of sleeps and feeding.

I am totally in favour of baby wearing, especially for premature babies. When the baby is in hospital, you are a mum, but not a mum, you are physically separated from your baby. You know each other, but not intimately yet, not like you would be if the baby had been born at term. 

I think baby wearing helps to bridge this gap and get you used to each other. There are many types of slings, but I am most certainly talking about a sling, not a baby carrier. I think wrap slings are best, and yes, they do take a bit of time to learn to tie, but they are comfy for both the baby and the mother. Joseph would sleep for hours in the sling, I could take him out in public and know that people would not reach to touch him, for fear of grabbing my boobs!

In the first month, I think its important to have a nice rhythm of sleeps, feeds and gentle activity, walks, chats, stories, watching television, and snuggling. I don’t really believe in strict timed routines, but if you try and keep an idea of when and how you want to do something and even write it down, you will start to see a pattern forming which will frame a routine.

I think its important to try and meet other mums and dads. It is difficult when you have had a premature baby and it can be confronting to join groups. I would urge you to try and make friends on the unit. I have four other mums (and a couple of others I met earlier in the stay), who I met up with regularly in the beginning, and still see now. I also attended our local Sure Start children’s centre. It wasn’t always easy, and I did get fed up of explaining why I had such a small baby, and answering difficult questions when really I could have done with conversations about what was on television last night! 

I found that speaking to the staff helped, my support worker would see me in these difficult conversations and change the subject, or have a “quiet word”. 

Over time things will start to get easier, and the time in hospital will start to become a distant, and less painful memory (I didn’t believe people when they said this). As scary as things can be at times, remember that this won’t last forever, and your baby won’t be tiny forever, and like me, you will one day find that you look fondly on the endless night feeds, the snuggles, and the looks of adoration from your tiny baby and those first smiles.

Special Delivery

For any parent, whether your baby was born at 24 weeks or at 42 weeks, weighed 1lb 7oz or 10lb 7oz, the moment you leave the hospital, put the baby in the car, and bring the baby home is the most amazing experience ever.

I once attended an information day for a nursing degree and the teacher asked “what is the most important day of a patient’s time in hospital?” Everyone had different answers, the day they get an answer, the day of their surgery, but no, it’s the day of discharge, and no day crystallises this more than the day a premature baby or any baby, goes home.

It was a Tuesday, the 21^st July when Joseph finally got the ok to go home. The morning was spent with my favourite doctor and the consultant. They asked me lots of questions, had I done my resuscitation training? Had we got everything ready at home? Did I understand Joseph’s medication schedule? They did check after check, and Dr D made sure I understood how to diagnose a hernia, and explained at great lengths, pointing to his own gentleman bits, about testicles. (Fortunately he did keep his clothes on!)

Tuesday on our unit was “ophthalmology day”, the eye doctor normally came in the morning, but of course, on our day of discharge, he had had a few emergencies and was running late. He finally arrived at 2.30 pm and hurriedly rushing through the other patients to get to us. Finally Joseph was given the all clear. We went to the main special care area and said our goodbyes. We had cuddles and tears and then that was it. A nurse carried Joseph in his car seat, and we put him in the car.

I sat in the back, with tears in my eyes. I think our 15 minute journey took closer to 45 minutes. We gently lifted the car seat in the house, and scooped our tiny baby into our arms. My husband took him and showed him every room. We put him down on a cushion and just watched him. It was amazing. He was ours. We were home.

Here are some other people’s thoughts.

“The journey home was scary, I was so paranoid the oxygen canister would start leaking!” - Jess

“Feeling terrified my dad would crash the car, and looking round at the world outside thinking how much life had changed.” - Justine

“We drove home SOOO slowly - didn't want to go round corners or over speed bumps too fast... We then went over to some neighbours in the evening. Skye was REALLY unsettled all night and for much of the following week, feeding every 45 minu...tes or so and screaming in between unless cuddled. It was also one of the hottest weeks of the year and I was utterly paranoid that I was going to overheat her. So much so that we went out in the car once she'd been home for about a week and put the aircon on full blast. She screamed and screamed and it was a while before we realised she was cold! We put a blanket over her and turned the aircon down and she settled. Bless her!” - Ruth

“Just grinning like a Cheshire cat the whole way home :) agree with Justine’s comment, I definitely saw the world in a different way once our precious cargo was on board :) on coming home: James went out to get my dad from the station a few hours after we got home. It was the first time we had truly been alone, just us. What a feeling!! Me and my boy, I felt on top of the world” - Kirsty

“The 3 hour drive home from the hospital took about 5 hours that day and we needed to stop and feed her, stopped in a car park and I’m sure the woman in the next car though i was feeding a doll she was still so tiny...got some very odd looks!...
As soon as we stepped in the flat I felt a rush of relief and also had to pinch myself as we'd waited so long for that day. It was a few days before we had visitors we just wanted to settle in as a family. it was an amazing feeling.” - Sara

“Remember with Emma feeling so excited and then the first night we had her at the emergency doctors because she was making noises that she didn't do in the nursery. We were told to go home and get some sleep!! Cara's homecoming was different but hectic. We ...had an idea she'd be out soon but thought the weekend but on Monday morning during doctor rounds the nurse popped her head out the door and said you're going home today. Panic as nothing was ready so rushed home mad 2 hours and back to get her. Second time round it was much more relaxed and exciting. Won't be doing it again though” - Tracey