Thursday 10 February 2011

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!

49 comments:

  1. What a great post. I was so relieved when little 'un didn't have to come home on oxygen as I had the same huge fire-extinguisher sized cylinder pictures in my head that you mentioned. I knew other babies in NICU/SCBU who did have to though and I often wondered how on earth the mums would cope.
    Thanks for sharing x

    ReplyDelete
  2. Great post, really helped me understand what happens. Not too afraid to have my baby hooked up now!

    ReplyDelete
  3. The other way to get more Facebook fans is by rewarding the
    loyal fans that you already have. They are designed to suit the individual needs of businesses
    that wish to either use sponsorship ads, advertising
    programs, business events, Facebook widgets for business websites,
    Facebook Like for corporate blogs, forums etc. There are many ways of doing
    this and this article take a look at some of them.

    my web blog: Buy Google Plus One Votes Cheap

    ReplyDelete
  4. providing relevant content for your blog. Robert Riohe is a
    well-known author, he has been writing different blogs on different topics like health,nutrition,supplements etc.
    , to all your fans.

    my website; Internet Marketing Coach

    ReplyDelete
  5. It was developed by Walter L. Let me tell you a quick story about
    the beauty of filling up on a paleo diet breakfast.

    Nuts(non processed) - Nuts are cholesterol free and eating one ounce per
    day reduces the risk of heart disease and type 2 diabetes.


    Also visit my website: paleo diet acne

    ReplyDelete
  6. You should never stop investigating, researching and analysing the market to
    be reactive and play the main role on your market.
    By using the autoresponder, you have been in front of a potential customer for five days.
    Hours of daily internet marketing available.

    My website :: Internet Marketing Coach

    ReplyDelete
  7. Only 1 address, while. Citrus juices help in decreasing the chance of bacteria to remain in your dog.
    Dog obedience training is a bit more than trained responses.


    Also visit my blog post electronic dog training aids

    ReplyDelete
  8. Now that your tea is hopefully taking effect let's think on that last thought for a moment. A man can develop a yeast infection in various ways. Get the answers you're looking for.


    Also visit my web blog - yeast infection antibiotics treatment
    my webpage :: untreated yeast infection and pregnancy

    ReplyDelete
  9. providing relevant content for your blog. Keep on experimenting but
    learn form the past mistakes and do not try to implement those in the future plans.
    If this kind of business you are looking for or planning to go into just for the reason that you wanted to consult or even handle those
    promotions for other businesses, well then, make sure that don’t fail to notice the opportunity to point out those costumers or clients of yours who
    are potentials in which you grow your own business with the
    very techniques you wanted to provide to them.

    Also visit my web page - Internet Marketing Techniques

    ReplyDelete
  10. can be included. By meat I mean red meat, white meat and seafood.
    Always check your physician before making any changes to your daily habits.


    My web site paleo diet and diabetes type 1

    ReplyDelete
  11. Only 1 address, while. In the event you employ strategies that
    may be employed in agreement together with your dog's normal urge and instincts, you'll
    be able to improve its character and provide restrictions that
    can maintain your dog satisfied. Research states that more dog trainers and
    owners are deciding on the dog training collar.

    Look at my web page ... learn dog training at home

    ReplyDelete
  12. A result of the immense size and strength that these animals can grow to
    means pets should be leash trained from a young age.
    Be patient with your dog. We turn off the TV.

    My weblog guard dog training at home
    my web page > dog training And Boarding

    ReplyDelete
  13. Okay, I'll admit I'm a little biased since I am the author of this article.

    There are judges, judging on originality, easy to understand what is going funny and timing
    for each commercial bank. Place a different sticker on the back of each guest.



    Feel free to surf to my web page :: 5th Birthday Party Ideas
    My webpage: 1st Birthday Party Ideas, 5th Birthday Party Ideas, 10th Birthday party ideas, 13th birthday party ideas, 16th birthday party ideas, 18th birthday party ideas

    ReplyDelete
  14. D Minor:. Then you can quickly and easily figure out how to play any chord in any key
    on the spot, whether you've memorized that specific chord or not. These hail every little thing played getting rid of barely the sophisticated keys, so you ought to keep effective toward crush extra listed below barely a limited area of time.

    Here is my webpage; piano chords and songs

    ReplyDelete
  15. Fun and nutritious Paleo Toddler Dessert Recipe. Anti Nutrients:
    . Other diets target only eating a particular food
    group or perhaps raw foods only.

    My homepage - paleo diet and cholesterol

    ReplyDelete
  16. Keep the sacrifices they've made in mind, and take the time to embrace the understanding of how much these people must love you to have traveled so far for your wedding. (Here's the key difference.
    This is not always something that brides or grooms have time to put
    together on their own.

    Feel free to visit my website - wedding Website Announcements
    my site :: our wedding website about us

    ReplyDelete
  17. The irritation could then spread in the baby's buttocks and upper thigh area, as well as the genitals. Nylon underclothing may also cause an allergic reaction in some woman. Apple-cider vinegar diluted in water kills yeast and provides temporary relief.

    My web site ... symptoms of yeast infection and bleeding

    ReplyDelete
  18. It is particularly helpful as you fight off this
    yeast infection in mouth. Include about three to 4 tablespoons of vinegar to a bathtub stuffed with a tiny
    sum of warm h2o and only bathe in it for fifteen to twenty minutes.
    Although the treatment has been successful for many
    people with Candida, be warned that some of the side effects may include
    excessive vaginal discharge, discomfort and burning in the vaginal area.


    my web blog :: yeast infection and antibiotics

    ReplyDelete
  19. There are features that allow you to keep track of vendors
    that you like and keep notes so you know why they are listed.

    Instead of sending your scanned invitation, it would be great if you create your
    own wedding website and invite your friends
    and relatives. With the advantages that technology is affording for us now
    planning that special day is a lot easier and simpler.


    my site; wedding website amanda isgate and brandon hicks
    Also see my web site - wedding website announcements

    ReplyDelete
  20. " A good tip is to weblog about things related to your industry with out giving away something which you could be making cash from. First a website has to be found, and such a task is often difficult when you consider the fact "each website is competing
    against millions of others for Top Placement in Search Engines.
    Budget.

    My web page: Internet Marketing Techniques

    ReplyDelete
  21. In other words, they go against thе grain of the careerѕ their
    parеnts had. Brazenhеad is a grеat place to gο with your family or for a busіneѕs
    lunch or dinner, but if you are looking for a party atmosphere, this isn't it. The food is decent and the drink specials on Tuesdays include $2.

    Also visit my homepage: best pub Quiz Names

    ReplyDelete
  22. G# or Ab - (lower) so#, (middle) do, (middle) re#
    G#, C, D# keys. -- Chord Symbol: Dm. Once you know these scales, in all twelve
    keys, then you have a very solid foundation on which to learn how to play piano chords.


    My website :: piano chords and lyrics of way back into love
    Also see my web site :: blues piano chords and scales

    ReplyDelete
  23. There are various kids birthday party games that it is possible to play with your kids and your guests.

    In this way, there will be no shortage of people at the party.

    Shortly after everyone arrived, I gathered everyone around the table to find a rail-air-cloud
    by activity.

    Feel free to visit my web site :: 16th Birthday party ideas
    My page > 1st Birthday Party Ideas, 5th Birthday Party Ideas, 10th Birthday party ideas, 13th birthday party ideas, 16th birthday party ideas, 18th birthday party ideas

    ReplyDelete
  24. In looking for the proper collar for the pets, things that you need to consider are safety,
    the training process as well as your convenience.
    Perhaps, the way to go will probably be yes. In 2005, Ford,
    a Gateway employee, decided it was time for a career change.


    Also visit my web site: taurus dog training austin
    Also see my web page: dog training as seen on tv

    ReplyDelete
  25. Some were practical, of course, but others were
    psychological and emotional. At the end of each round read out the cumulative scores.
    Theme Format: It is almost like standard format of the pub quiz.


    my website; pub quiz amsterdam

    ReplyDelete
  26. Remote proper dog training collars allow you to train your puppy from the distance, without using a lead to restrain or restrict the dog.
    You should teach your dog and talk to him during training sessions.
    Dog Training Using Praise.

    Feel free to surf to my blog :: professional dog training accessories

    ReplyDelete
  27. You still have to expert all of those other guitar chords so as to engage in very easy popular music.

    The sooner you memorize some chords, the easier will be for you to perform plenty of styles of music.
    It is very soothing to hear the sound of piano and based on such vast change of scales, a song sounds so
    melodious.

    my site ... tanging yaman Piano chords and lyrics

    ReplyDelete
  28. '''. -- Chord Symbol: Dm. offers free online piano lessons.

    Also visit my web page: piano chords a thousand miles
    my page > free piano chords apologize

    ReplyDelete
  29. - Set thoroughly cooked chicken aside. - 1 tsp cinnamon (optional).
    Other diets target only eating a particular food group or perhaps raw foods only.


    Feel free to visit my web blog - paleo diet acne rosacea

    ReplyDelete
  30. It is particularly helpful as you fight off this yeast infection in mouth.
    This will ensure that you treat the right disease when you take the medication.

    Finding the best vaginal yeast infection remedy that will work for you will end all
    the disturbing symptoms of the infection improving the quality of
    your life.

    Here is my web-site :: recurring yeast infection and diabetes

    ReplyDelete
  31. (Τhank you rounds are alwaуѕ ωelcome, of сoursе.
    Αt the еnd of each round reаd
    out the cumulative scoгes. The declinе of the Εaѕt
    side blues scenе was ԁisheartеning, but,
    it also gavе risе to the nеed for a fresh start,
    which came in thе form of the next blues-only vеnue,
    Αntоne's, founded by the late Clifford Antone, during the summer of 1975.

    Also visit my homepage free pub quiz and answers
    My webpage - pub Quiz amsterdam

    ReplyDelete
  32. The best wedding planning i - Pad app is the one that
    is easy to use and has all of the organizational tools needed to plan an awesome wedding.
    Many styles of flowers are available at the marketplace especially doomed for ornamentation prospect.
    With the advantages that technology is affording for us now planning that
    special day is a lot easier and simpler.

    My web site wedding website affiliate program
    my website - Wedding website advertising

    ReplyDelete
  33. When you're learning chords, you learn and study them for only One Key at a time. Do not overlook this part of your learning. offers free online piano lessons.

    Feel free to surf to my web page piano chords and lyrics of open arms by journey

    ReplyDelete
  34. Fun and nutritious Paleo Toddler Dessert Recipe.
    Obesity is an epidemic in our society. - Lecithin.

    My site ... the paleo diet and ms

    ReplyDelete
  35. In this article I will teach you the basics of how to
    have fun learning your chords by playing out of a Fake Book.
    Do not overlook this part of your learning. These hail every little thing played getting rid of barely the
    sophisticated keys, so you ought to keep effective toward crush extra listed below barely a limited
    area of time.

    Also visit my web blog; piano chords apologize one republic

    ReplyDelete
  36. Narrow blood vessels lie alongside the intestines of the earthworm and they
    absorb the nutrients from the alimentary canal feeding the rest of the body.
    Brazenhead is a great place to go with your family or for a
    business lunch or dinner, but if you are
    looking for a party atmosphere, this isn't it. Ask your local club to run this for you.

    Feel free to visit my web blog; great pub quiz names

    ReplyDelete
  37. Kids will enjoy playing a game of putt-putt, or riding
    go carts in the Putt-Putt race zone. Party packages include admission, skate rentals, party favors, soda,
    ice cream, balloon bouquet and more. Remember to get awesome free samples kids printable
    birthday invitations and wording to help get the hype going for the party.


    Feel free to visit my blog ... 5th Birthday Party Ideas

    ReplyDelete
  38. Even just 15 minutes a day keeps your piano playing ability in tune.
    So you want to learn how to play the piano.
    Piano players that struggle are the ones that don't play with passion and feeling.

    Also visit my blog post - piano chords and lyrics of songs

    ReplyDelete
  39. In this article I will teach you the basics of how to have
    fun learning your chords by playing out of a Fake Book.
    As an alternative, it will most likely be far more powerful for you to learn about
    audio and chord idea. It is very soothing to hear the sound of piano and based on such vast change of scales, a
    song sounds so melodious.

    my weblog learning piano Chords and scales

    ReplyDelete
  40. squares with various tea leaves and tea flavors inside
    each square. For adults, a virtual makeover of
    hair and makeup may be the equivalent of a little one hood game, with an improved style sensibility
    that tends to make the knowledge each entertaining and inspirational.
    I hope you have fun planing a birthday party for your tween, I hope my birthday party ideas for tween's helped you.

    My site :: bloomingdales
    My web page :: photography

    ReplyDelete
  41. These emails will have a link to your website and will invite your subscribers to visit
    your site. First a website has to be found, and such a task is often difficult when you
    consider the fact "each website is competing against millions of others for Top Placement in Search Engines. Budget.

    My web site Internet Marketing Plan

    ReplyDelete
  42. This is because they have a high number of satisfied clients who have
    purchased likes and fans in bulk and are reaping
    the immense benefits. An experienced service provider from the industry can anly assist you buy Facebook fans and likes that would be real and active Facebook users.

    There are many ways of doing this and this article take a look at some of them.


    Feel free to visit my webpage :: increase facebook fans
    my web page :: http://unleashingyou.org

    ReplyDelete
  43. there are lots of family dog web pages which provide totally free information on several unique instruction troubles.
    The truth is this isn't aversion education. 435-896-1737 Annabella, Utah Trainers: Chris and Julie Holt.

    Also visit my webpage; cadaver dog training aids

    ReplyDelete
  44. Later on, among the continued practice ending up
    will continue to be auxiliary accustomed burning the various chords.
    -- Notes: Bb D F. offers free online piano lessons.

    My web-site - Piano Chords america the beautiful

    ReplyDelete
  45. This is usually considered a fun and effective learning method in
    general. The sooner you memorize some chords, the easier will be for you to perform plenty of styles
    of music. When you're acquainted with these core 7 keys you can start to learn about the black keys (flats and sharps).

    Check out my page :: piano chords and scales

    ReplyDelete
  46. With the increasing fan base your product sale will also considerably increase and your marketing objectives will be easily achieved.
    Buy facebook fans are actually referred to now as Facebook, but often are used interchangeably.
    Facebook fans offers the opportunity for you to be spontaneous and
    quick responses as well as receive messages from your users.


    Here is my weblog ... Buy Facebook Fans Cheap

    ReplyDelete
  47. This is usually considered a fun and effective learning method in general.

    Now among the advice of your educational materials,
    shoring jar discover all the things of the substitute
    chords. It is very soothing to hear the sound of piano
    and based on such vast change of scales, a song sounds so melodious.


    my site :: printable piano Chords and scales

    ReplyDelete
  48. D Minor:. The sooner you memorize some chords, the easier will
    be for you to perform plenty of styles of music.
    offers free online piano lessons.

    Look at my web page; piano chords and scales

    ReplyDelete
  49. I will be most certainly of the perception a magic formula so that
    you can Doggie Behavior is top-notch level item that supplies a large number involving quality info for a surprisingly low
    value. Be patient with your dog. In 2005, Ford, a Gateway employee,
    decided it was time for a career change.

    Here is my webpage :: alaska dog training and boarding

    ReplyDelete