World Prematurity Day

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It has been a while since I’ve added a new blog post, mostly due to Henry being an active toddler resulting in a lot less free time! So today, while Henry has a short nap, I’m frantically typing away as I really wanted to write post in honour of World Prematurity Day with the theme of #PrematurityIs; a campaign led by Bliss to encourage preemie parents to share what prematurity means to them. This kicked off at the beginning of the week with a touching video which I am very proud to have been part of:

Throughout the week I’ve been sharing what prematurity means to me through the Miracle Babies Facebook page, which I’ll share below along with some points shared by other parents on the page.

To me, prematurity is a lot of things, here are a few snippets of the journey that stand out . . .

. . . going into labour at 22 weeks into a twin pregnancy and giving birth at 23+0 weeks.

. . . expressing milk every 3 – 4 hours (including throughout the night).

. . . barely being able to see what my twin boys look like due to them being covered in medical equipment.

. . . saying goodbye to my son after two days in hospital.

. . . waiting three weeks for a cuddle with my surviving twin.

. . . being excited to breast-feed my son after 12 weeks of waiting.

. . . bringing home my surviving twin boy after 4 months in hospital and being immensely grateful to the wonderful doctors and nurses who made that day possible.

. . . counting down the weeks into my current pregnancy, hoping for a full term delivery for my rainbow baby.

I could list many more but those are the key points that stand out in my mind. Despite the above, this is Henry when he was born and now at 22 months old, happy, full of energy and, thankfully, oblivious to his rough start to life:

Henry, then and now

Here are a couple of stories that have been shared from our Facebook followers:

. . . (going) into labour at 26weeks, into a twin pregnancy, 38 yrs ago, this was extremely frightening. First pregnancy as well so even more worrying, not really knowing what to expect. Those days this sort of thing didn’t happen very often!!!!!!

. . . I’ll never forget the day I was discharged from the hospital. It’s so hard when you are discharged way before your baby is. I remember the first time leaving the building and seeing a couple of dads walking in with empty car seats and balloons

And lastly, I’ll close with some words from a good friend I made this year through our shared experiences, a fellow 23-weeker mummy to surviving twin, Leo:

Prematurity is . . .

Leaving the hospital every night without my baby for 130 nights and for around two thirds of that feeling like we were living on a knife edge.

Phoning the hospital every night and morning wondering what were they going to say and thinking if my babies nurse didn’t come to the phone in 30 seconds there must be something wrong (silly I know)

Other parents asking “what gestation is your baby?” and saying 23 weeks and waiting for there face to drop and now I say it with pride against the odds you did it Leo!

Being shown care and such kindness by people I didn’t know before other parents, nurses, midwifes, doctors and consultants.

Here’s Leo just after he was born and now, looking very healthy and happy!

Leo, then and now.

Happy World Prematurity Day to all preemie parents, miracle babies and the angels whose journeys were cut short! Please share and help raise awareness.

The Story Behind the Logo

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I have been meaning to write this post for a while as I wanted to explain the significance behind the butterfly and dragonfly used in the logo for this site.

butterflyFirstly, the butterfly represents Henry. Shortly after Henry was discharged a lot of neonatal units, including ours, adopted the butterfly symbol to indicate a surviving twin. If staff or other parents see the butterfly emblem on an incubator they would know that baby was a survivor from a multiple pregnancy. In addition to this, I have often likened Henry’s journey to that of a butterfly growing inside a cocoon, except Henry’s cocoon was see-through and made of plastic! It was a pretty amazing transformation from when he was born to the baby discharged four months later.

dragonflyThe dragonfly represents Archie. A nurse from the bereavement team at the hospital gave us a beautiful book called Waterbugs and Dragonflies. It is a book designed to explain death to young children, you can read the story online here. It gives a lovely analogy of a waterbug’s transition into a dragonfly being similar to a person dying and going to an unknown place above. The metaphor resonated with me and so whenever I see a dragonfly, I think of Archie.

The colours? The colours in the logo are also symbolic; each of the boys were wearing woolen hats at the beginning to hold their ventilator tubes in place, Henry had a green hat and Archie had a blue one.

Just a short post this time, I’m hoping to get back into writing soon, although Henry keeps me very busy now-a-days!

Some Due Date Fundraising

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Last Monday (24th April) was the one year due date birthday of Henry and Archie, this day one year ago is when they should have been born, although of course Henry is in fact sixteen months old. This time last year Henry had been home from hospital for a whole week! Looking back now, it’s incredible to see how far he has come from being on home oxygen and sleeping most of the time to the lively and energetic little boy he is today.

Henry: Then and Now

We perhaps would not put so much emphasis on his ‘due date birthday’ if Henry and his brother had not been born so close to Christmas, but as this is the case we are planning to use the due date as the main celebration time for Henry as we feel that his real birthday may get a little overshadowed by Christmas festivities.

Harry and HermioneTo celebrate the occasion, this year I decided to organise a special party and turn it into a fundraising event to raise money for the Oliver Fisher Neonatal Unit who cared for both our boys. As Henry loves his books I chose a book-theme for the day and put together various activities, including: a raffle, treasure hunt, photobooth, book quiz and cake sale. We also had a fancy dress competition; Henry and his girlfriend dressed up as Peter Pan and Tinkerbell amongst other very cute baby costumes. Overall the competition, judged by Henry’s Godfather and ex-Oliver Fisher baby, was was won by a very cute Harry Potter and Hermione!

A highlight of the day was entertainment for the babies in the form of Music Bugs which was great fun with the babies enjoying exploring the different instruments on offer as well as lots and lots of bubbles! The energetic instructor, Amy, also very kindly donated to our raffle. In addition we had a bouncy castle and soft play to keep the babies amused, although we discovered Henry seems to be completely terrified of bouncy castles!

Henry enjoying Music Bugs

It was lovely to see so many of Henry’s hospital baby friends at the party, all doing so well despite each of them having had a bumpy start to life.

Oliver Fisher Babies

In total the event has raised an additional £440 towards our ongoing fundraising of which we have so far reached a total of £2,643. If you would like to make a donation click here to go to our Just Giving page.

Finally, thank you to everyone who came along and made the day special and to those who donated cakes and raffle prizes, including the following businesses:

My “Extra” Mother’s Day

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This Sunday is Mother’s Day so I thought I would mark the occasion by sharing the story of my first Mother’s Day.

Mother's Day Cards and GiftLast year was my first Mother’s Day; it was an extra Mother’s Day that I shouldn’t have had, my babies should still have been tucked up inside me with my husband buying a “from the bump” card, but that’s not what fate had in store. Instead, here was Henry, still in intensive care but thankfully now making good progress, and meanwhile we were on the brink of planning a funeral for his brother. Despite the circumstances being far from ideal, I chose to look at the many positives and despite everything, for me, this was still a time to celebrate. I couldn’t wait to arrive at the hospital to see my beautiful boy who had survived against the odds to be here, and as a result I had gained an extra Mother’s Day, so how could I complain?

Fresh and Clean After Top and TailTo make the occasion extra special I was able to do something new for Henry. For the first time I was able to give Henry his first top and tail wash, it may seem insignificant but it was amazing to just hit another milestone of something I could do for my baby. I also had a brief cuddle, very brief as Henry was a bit unsettled so had to go back in his incubator rather quickly, but no matter how brief it was, to me it didn’t matter as at least I got a cuddle which, just a few weeks ago would have been something I could only dream about!

Overall we had a good day, Henry had managed to do a bit of shopping from his incubator, buying me a nice personalised mug and when we arrived on the unit all the nurses had made cards from the babies with their pictures on, which were a beautiful treat for each of us!

Henry and MummyThis year, I am very much looking forward to waking up to my happy, bouncy baby boy at home and just having some nice cuddles in bed, okay if they come with a side of breakfast I’m not going to complain either!

When you’ve been on a journey like ours you learn to appreciate the small things so whatever we do on Sunday, I’m going to lap up every minute with my miracle baby. I hope you have a nice time too. Happy Mother’s Day!

If you have a NICU Mother’s Day story I’d love to hear it! Tell me about it in the comments below or over on our Facebook page.

A Book-Themed Post for World Book Day

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Henry as The Cat in the HatToday Henry is celebrating his first World Book Day out of hospital, which also coincides with Dr Seuss’ birthday(hence the costume!) I know he’s not in school yet but as he has such a love for books I felt the need to mark the occasion by writing a blog post and dressing him up! I’ve talked before about the benefits of reading to your baby after Henry featured as poster boy for his neonatal unit’s ‘Books for Babies’ scheme in which every baby is given a book upon admission to encourage their parents to read to them during their stay. When Henry was in hospital we would read to him several times throughout the day and every night before we went home; a routine we have continued since he was discharged last April.

Reading Dear ZooWhether at home or in hospital, reading promotes bonding between parent and baby, babies enjoy hearing their parents’ voices and listening to the words even if they do not understand the stories at first. As a former teacher I am all too aware of the benefits of reading regularly and have seen first hand the difference in children who read compared to those who don’t as teenagers. It is so important to instil a love for reading at a young age so that it becomes second nature as they get older. It has been well documented that children who read regularly achieve better results at GCSE level.

As you can see, all the reading we do at home is already paying off, Henry gets very excited when we sit down to read to him now:

So, as it’s World Book Day I thought I would share with you some of Henry’s favourite books, either to give you some ideas or to inspire you to read to your little ones if you don’t already.

I’ve split the list into ‘daytime reading’, consisting of board books that can withstand some heavy-handed page-turning and a coating of drool, and ‘bedtime/hospital favourites’, softback books with good stories that don’t need to be so hard-wearing.

Daytime reading

Henry’s Top Daytime Reads

We read a lot throughout the day and have quite a few board books through which we circulate, although Henry has some clear favourites which are as follows:

  • Reading to HenryWe’re Going on a Bear Hunt by Michael Rosen – Henry received this book for Christmas and absolutely loves the repetition presented on every other page.
  • That’s Not My . . . by Fiona Watt and Rachel Wells – We have That’s Not My… Dinosaur but there is a huge collection of books in the series featuring various animals and objects, each one featuring different textures on every page for a truly sensory experience while you are reading.
  • Dear Zoo by Rod Campbell – This is a delightful lift-the-flap book that Henry adores with a different animal on each page, although the lion’s cage has had to be fixed a few times after some overenthusiastic flap-lifting! This is not only a lovely story but it also gives you an opportunity to introduce the baby to different animal sounds (although I was a bit stumped when trying to come up with a ‘giraffe noise’!).
  • Peppa Pig collection – We are gradually collecting the Peppa Pig books and Henry has loved them all so far. They are full of brightly coloured illustrations and are just the right length for holding Henry’s attention with cute stories about everyday family life. Our favourite being George’s Racing Car.
  • My Little World collection by Jonathan Litton – We have three books in this series now: Roar, Zoom and I Love My Daddy (hopefully the I Love My Mummy one will follow shortly!). They are bigger than the average board book with lovely rhyming stories and beautiful, bold illustrations that never fail to hold Henry’s interest.

Our Favourite Hospital and Bedtime Books

This list could go on and on as we have such a large collection; it was joked that Henry had his own personal library next to his incubator! It took a while to choose but I decided to just focus on these few favourites as they have been with us throughout the hospital journey and beyond:

  • Henry as The GruffaloVirtually any of Julia Donaldson’s books – We loved reading these beautiful rhyming stories throughout Henry’s hospital stay and they are great hits at bedtime now. Our particular favourites include The Gruffalo, Cave Baby and Tyrannosaurus Drip.
  • Charlie’s First Night by Amy Hest – This is a heartwarming story about a boy (called Henry) bringing his pet dog, Charlie, home for the first time.
  • Bringing Down the Moon by Jonathan Emmett – The humorous antics of Mole, who tries to pull the moon down from the sky! It has lots of different characters and is a great one for doing silly voices, my husband and I often try to outdo one another at bedtime with funny voices for each character.
  • Goodnight Harry (we read it as ‘Henry’) by Kim Lewis – A beautiful story about a teddy bear who despite his best efforts is struggling to fall asleep.
  • Can’t You Sleep, Little Bear by Martin Waddell – The story of a cheeky little bear who can’t get to sleep because it is too dark.
  • Usborne’s 100 Illustrated Stories – This is a fantastic collection of fairy tails from all over the world and contains all the classics we all know and love; it was ideal for daytime reading in the hospital as it took up a lot less space than having lots of individual books. The stories are also quite short so we could read as many or as few as we liked in a row.

Reading to Henry

Finally to end this book-filled post, since my last post I have released two more preemie books to read to Henry as he grows up and for other preemie parents to share with their children. They are available through the links below:

Did you read to your preemie in hospital? What were/are your favourite books to read to your little ones? I’d love to hear your reading stories in the comments below or on our Facebook Page.

(Note: Links to books on Amazon are affiliate links meaning I receive a small percentage of the profit if you buy through here. They are, however, all books we own and love!)

A Different Kind of Preemie Guilt

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Firstly, I’m just going to put this out there: I don’t feel guilty for being a preemie mum.

One thing I hear a lot from fellow preemie mums is that they feel guilty for having a premature baby. Guilt for their bodies failing them and not being able to keep the babies safely inside them until term. I don’t feel that way and maybe that makes me a little weird! I sometimes feel like my brain is wired differently to most people, and wonder if I’m slightly on the autistic spectrum (okay as a former teacher I can recognise that I’m definitely on there!). I see things a little more black and white sometimes. When I was pregnant I followed all the advice given and looked after my body, and in that final week of pregnancy when my body was feeling tired, I listened to it, I took things easy and put my feet up. On Christmas Day, the day before going into labour, I had everyone waiting on me so I barely had to move all day, so from my point of view, I consciously did nothing wrong and therefore in my black and white mind I have done nothing for which to feel guilty; regarding the premature labour at least. That said, there are two things for which guilt does rear its ugly head and they both surround the loss of my son, Archie.

1. Why couldn’t he just stay in there?

Archie shortly after birth

Archie shortly after birth

After giving birth to Henry the labour appeared to stop and I was given medication to start the contractions again so Archie could be delivered, at the time the thought went through my head: “why can’t he just stay in there for a bit longer?” I never voiced this at the time and that I regret. I’ve since read stories of twins being born days or even weeks apart and I often wonder why that option wasn’t presented to me. In reality I’m sure there was a good reason, the medical team probably knew something I didn’t and it’s not my place to question their expertise, but I can’t help wonder . . . what if?

2. Just a little more time . . .

Archie - before it everything went wrong

Archie – still fighting a few hours before gaining his wings

The other thing I feel guilty about is the lack of time spent with Archie before he gained his wings. The first day was spent in a blur while the babies were stabilised and whisked off by neonatal ambulances to a hospital with a NICU where I was admitted shortly afterwards. When my husband and I arrived we briefly visited the babies, all was well so my husband went home and I got settled in the ward and proceeded with my lesson in hand expressing milk. I visited the babies later while delivering the milk to check they were okay and then retreated back to the ward where I fell asleep until 3am when it was time to express once again. Diligently I delivered my next syringe of milk and handed it to Archie’s nurse. I don’t really remember anything of these two visits except the fact they were both stable. I spent the whole night at the hospital and only spent a few minutes with each baby. Why didn’t I sit with each of them? Talk to them? Read to them? Why did I trot back to the ward in ignorant bliss? Sure, I was exhausted after 36 hours of no sleep but surely i could have spent an hour or so with them on their first night in the world. In truth I can barely remember anything about that night, the only reason I knew I handed the milk to Archie’s nurse was because she told me later. I hate that my memories of the first day are so fragmented. Maybe I was just too tired to think but I will always carry around this little piece of guilt for not spending more time with my sons on the night before they even had names, on the night that turned out to be Archie’s first and last night on earth. From the next day onward I kept a diary so I would not forget any more parts of the journey but most of that first day and night will seemingly be forever lost somewhere in the depths of my mind.

The night we lost Archie changed me; I couldn’t get the time back with Archie but from that moment on I was not going to miss any time with Henry and I made sure I was there by his side as much as I possibly could and despite that it still did not feel like enough.

Involving Family and Friends in your Neonatal Journey

Henry in his incubatorAs difficult as the neonatal journey was for us as parents, it was no picnic for grandparents, family or friends either. Not only were they worried about us and Henry but they were often left feeling there was little they could do to help.

Strict hospital visiting rules also mean that some family members may feel left out of the journey too, in our neonatal unit visiting was for grandparents and siblings only. Looking back, when our parents did visit they must have found it quite difficult trying to make conversation over lunch while we rapidly gulped down our food in our hurry to get back to Henry (and in my case, express more milk!), especially in the first month when things could change so suddenly. Despite the situation, however, there were a few things that relatives did which really helped us and after posting the question and gathering responses from other NICU mums on the Facebook page I’ve put together a list of these things below as well as some handy tips for easily updating everyone.

How can friends and relatives help?

If you are a friend or relative of someone with a baby in neonatal care you may feel there is nothing you can do to help but here are a few things you can do if you have some spare time:

  • freezer mealsBatch cooking meals – The last thing you have time or energy for when your child is in hospital is cooking and thankfully we were provided with a lovely selection of home-cooked meals frozen by my sister-in-law and a two-course feast from one of our cousins. This was so helpful, and something that was reiterated by several other parents whose family members did the same.
  • Childcare for siblings – Childcare was not something we had to worry about, but for a lot of parents the baby in the NICU is not their only child and they benefited greatly from grandparents and friends offering babysitting services, allowing them more time in the hospital.
  • lil dude insideOffering lifts – Some parents cannot drive and visiting can be difficult when relying on public transport, especially during public holidays. In addition a lot of mothers of premature babies may have had a caesarian section meaning they are not allowed to drive for six weeks. Offering a lift to a struggling parent can mean a lot, not to mention the benefit of a listening ear on the car journey to the hospital.
  • Updating friends and extended family – As a parent, it is difficult to keep everyone updated (see more on this below) so having a chain of updates running through the family was very helpful, even Henry’s great-grandma was able to play a role! We only needed to update grandparents and a few selected friends who then cascaded this to others.
  • Housework/Gardening – Chores don’t feature in the priority list of parents with a baby in the NICU; our housework was completed to a minimal standard (although as we were never home it didn’t really get too dirty) but the gardens, however, did not get touched and by the time Spring arrived we were very grateful to the in-laws for setting to work, mowing the lawns and de-weeding our mini-jungles!
  • Odd jobs/helping with to-do lists – There are many jobs that you may have been planning to do before your baby arrives and a premature baby quickly puts a stop to these. Unfortunately some items on the to-do list still have to be done; for us, this was selling our old car and thankfully a family member took charge with this and had it sold within a couple of weeks after organising viewings and test drives. All we had to do was sign the paperwork.

Here’s a handy shareable tick list (click to enlarge or download) you can share with your friends and family:

Helping a NICU Parent

Easy Ways to Update Everyone

Following the early arrival of a baby, well-meaning friends and relatives will all wish to be kept in the loop to know how the little one is getting on. As parents it is hard to find the time to give out regular updates so here are some easy, stress-free ways to update those important people:

  • Update chain – Only update a few select people and ask them to cascade to others who will in tum pass on to more people until eventually everyone knows what is happening. This is particularly helpful in the early days before you have time to fully process the situation.
  • Henry albumShared photo album – You will inevitably find yourselves taking lots of pictures of your baby during their time in hospital; by adding these straight to a shared album using an app like Google Photos you can share the link with family or friends and everyone who has joined the album will receive a notification when a new photo is added and be able to watch your baby making progress. Sometimes a picture says 1,000 words!
  • Group messages – Creating a messaging group in an app like Facebook Messenger or Whatsapp can be beneficial for updating a small group of people at once, you may want to be careful about including too many people in the group, however, as the conversation can be difficult to keep track of if lots of people are responding or asking questions at the same time.
  • Social Media – If you are a Facebook user then this can be really useful for updating large numbers of people at once although it can be a little overwhelming trying to respond to lots of comments and there may be the expectation to update regularly. Personally I couldn’t face using Facebook for the first few weeks, as Henry was so extremely premature I was too worried to even contemplate updating my status! Once he was a bit stronger, I started to add the odd picture or video and I know these little random updates were appreciated by friends and family.

I hope you have found these lists useful. Have I missed anything? If so, please leave a comment below.

A Neonatal Christmas and New Year

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Henry's friend, Stanley

Henry’s friend, Stanley

As most of you will know, our twin boys were born just after Christmas on 27th December (full story here) and although the neonatal unit was clad in Christmas decorations and lights we avoided the Christmas Day festivities, thankfully, spending the day in the comfort of our own home eating turkey and mince pies blissfully unaware of the world of beeping monitors, blood gases and ventilation that would soon engulf us for the next four months. Little did we know I would go into labour the very next day.

During Henry and Archie’s time in hospital we made many friends, some of whom did spend Christmas with their babies on the unit and the parents of one of his friends have kindly agreed to share their experiences for me to include in this festive blog post.

Stanley with his teddy

Stanley with his teddy

This is Henry’s friend, Stanley. He was born at 30 weeks on 15th December weighing 3lb 3oz. The following is written by Stanley’s parents and is the story of how they spent their Christmas and New Year:

“On 15th December we had a very unexpected visitor. This wasn’t a salesman, but our premature baby boy, Stanley. Ever since Stanley was admitted onto The Oliver Fisher Unit we received nothing but hope, support, advice, tutorials, help, guidance, professionalism and knowledge. This wasn’t just from the superhero staff members, this was also a combination of other parents too. Even though, like everyone else, we were very worried about our child, this felt like a warm welcoming committee of unlimited positivity. Around the clock Stanley was attended to in every way with immediate secure staff competency. Plus the doctors walk around every morning, wasn’t a chore for us parents, but more of a hobby or interest.

The build up for Christmas was approaching fast, and if we are honest, we cancelled Christmas prematurely before we knew less information on how this unit operates. During the festive period staff were quite often dressed up in hats, Xmas jumpers etc. this included the cleaners too; such a jolly bunch. That made us feel festive. They knew that we were in there for Christmas and knew we more than likely didn’t care for it at this worrying time, but they still persevered in making this a semi-fun experience. The decorations and tree were nice too, but I always felt hungry seeing their chocolates and biscuits at the desk! We were also granted permission to place a Christmas card on top of Stanley’s incubator, which was a nice gesture. But even though this seemed like a fun environment; the jobs, procedures and tasks were still completed to maximum proficiency. We visited Stanley on Christmas day and all children received a laminated photo of themselves and a Christmas message with a small sack of presents which consisted of a toy and a brush. No one wants to work Christmas day or even have a child in hospital over this time as this is a time for family and friends to gather, but having said that, the staff treated this as a special day and were as helpful and happy as ever. We left the hospital in the afternoon and returned on Boxing Day morning, after being advised by a staff nurse that having five minutes to ourselves would do us good. She was right, yes we were anxious to see Stanley and felt guilty we weren’t there all day, but looking back now, I can see exactly what she meant. This certainly wasn’t a case of just being another patient, this was an educational process which we found very elaborating.

The period in between Christmas and new year was back to business as normal. But on New Years Eve, we insisted on spending the new year in with our son. We had Stan out of his incubator, while watching many of the firework displays, as we knew that 2016 would be very special as our Stanley will be coming home.”

Knitted Santa and snowmanSo, although the neonatal unit is nobody’s first choice of Christmas venue, it isn’t all doom and gloom, the very fact that you are there means your baby has already accomplished great things and beaten the odds and that miracle alone is a huge cause for celebration. I would like to mention here, a very special group of people that brings a little extra festive cheer to the unit during the holiday season and that is the Oliver Fisher Knitting Group led by Kay Gilham. The ladies in this group not only spend their time all year around knitting bonnets, blankets, cardigans and anything else that may be required, at Christmas they work a bit of extra magic producing Santa sacks for the babies containing lovely knitted treats like teddies and comforters (as mentioned in Stanley’s story above). There are often little treats included for the mums too. Here are some examples of this year’s lovely Santa sacks:

Sacks and contents

As for New Year. . . we were by Henry’s side at midnight, watching fireworks through the window behind his incubator and reading him some lovely stories; and there was nowhere else we would rather have been. New Year’s Day turned out to be extra special for me as it was the first time I was able to touch Henry and change his nappy, it’s amazing how something so basic can be so wonderfully fulfilling at the same time. I was finally able to do something to feel like a real mum and that alone was enough to make New Year special.

Merry Christmas and Happy New Year from our little miracle!

Henry the Elf