Saturday, 31 January 2009

Gracie meets Phoebe for the first time!

Friday, 30 January 2009

Phoebe... Day 18!

This week has been a big week for the Kingsley-Smith Family... Julia (Paul's sister) got engaged to James last weekend, which we are HUGELY excited about. I (Paul) started work at LEFC on Tuesday, Phoebe had her first MRI scan (brain) on Wednesday, I played squash on Thursday (and my buttocks are killing as a result!) and today, Gracie met Phoebe for the first time. 

Phoebe isn't doing as well as we'd expected this week; While she's putting on weight like an American at McDonalds (she now weighs 1135g (2lbs 8oz)) she is still really struggling with her breathing. She is still being supported by her C-PAP, and she is having Apnia episodes quite regularly which isn't good. 

They don't feel she is in a position to come off C-PAP which is a real shame. They have her on a maximum caffeine dose which usually sorts this problem out, but in Phoebe's case it isn't, so they are all a bit confused about it although they think she may have some minor lung disease. 

We really need prayer that she can get the strength in her lungs to fully breathe on her own... at present she wouldn't survive without the C-PAP even though she showed such promising signs over the last couple of weeks. 

We are waiting to speak with the doctor in charge of the brain injury study, but his initial write up of Phoebe's scan indicates that there are no brain injuries although there are a couple of minor hemorrhages; Apparently there is nothing to be concerned about which is good news though. 

We're exhausted by driving to and from Vancouver but slowly feel like we are developing a routine that might work for us. We're really praying that she will become more stable (and be able to breathe without C-PAP) so that she could be transfered to a more local hospital (30 Minutes away) so please pray with us. As ever, here are some photos. 
Gracie and Laura washing up ready for Gracie to see Phoebe for the first time

'Rounds'; This is where the doctors and nurses discuss Phoebe's progress each morning

Our first family photo

Sunday, 25 January 2009

This Weekend... Phoebe, Vancouver, New Friends!

This weekend we headed into Vancouver on Friday night to stay with our new friends Jonny, Esther & Ruby... Strangely we've never met them before, even though we have a ton of friends in common from both New Zealand and the UK (Jonny used to work with Laura's brother Tom at St Mary's). It was lovely to join the dots and chat about our common lives in the UK and NZ!

The initial idea was that we'd hang out with them and use them as a base so we could spend more time with Phoebe over the weekend... The weekend didn't quite work as planned as Laura spent most of Saturday in bed sick (24 hour bug) at their house. This did however give me a chance to do a little bit of sightseeing with Laura's mum, Gracie and my trusty GPS! 

We headed into Vancouver and cruised through Stanley Park, we headed up to Grouse Mountain where we took a cable car to the top, had a sleigh ride in the snow, and had a very (over priced) lunch in the lodge! We then came down the mountain and went to a beautiful little place called Deep Cove, which felt remarkably like the South Island of New Zealand.

I did manage to see Phoebe, and she is doing well. She has had a little blip this week with her body temperature dropping quite considerably on Friday; They aren't quite sure why it dropped, but she has managed to regulate herself again since; She is now wrapped up like a little bean! This temperature drop has affected her breathing and heart rate again so we'd love more prayer that this will completely normalize. 

By midnight tonight she will be on her full feed which is fantastic news... She is still gaining weight and is now almost 1100g. They are adding HMF (Human Milk Fortifier) to her feeds to meet protein and mineral requirements for growth and they hope to take her IV out by tomorrow as she'll hopefully be finishing her antibiotics and her TPN (Total Perernteral Nutrition).
The Vancouver skyline from Stanley Park
Grandma and Gracie in Stanley Park
In the cable car on the way up Grouse
Gracie and a grizzly!

A stunning view of downtown Vancouver from our eatery!
Grandma and Gracie in the snow!
Daddy and Gracie on our sleigh ride!
The view up Grouse
Phoebe... 12 days old!
Our new friends, Esther, Jonny & Ruby

Thursday, 22 January 2009

Kangaroo Care (in video)

Here is a bit of video from our trip to the hospital this evening...(This is a shorter but higher quality version of the video we posted yesterday. The full version is still available on Youtube)

Growing Up...

While we have a little 10 day old premmie who seems a long way off maturity, we also have an adorable 2 year old who gets older by the minute! Today we took her for her first haircut in a hairdresser and in honesty it felt a bit surreal. It doesn't seem like 2 minutes ago that we were willing her hair to grow, and now suddenly we are asking the hairdresser to take a couple of inches off... How time flies! 

Kangaroo Care with Daddy

Today was my first opportunity to hold Phoebe, and Laura was armed and ready with the camera to take some photos. I spent about an hour holding Phoebe against my chest in what they call 'Kangaroo Care'; It is supposedly very beneficial for premature baby's to receive this kind of contact with it's parents although I've not actually read up on why! I'll just have to take the doctors word for it at this stage. Phoebe appeared to be really relaxed throughout the entire hold, with her breathing, O2 saturations & heart rate remaining stable the whole time.

Phoebe really does seem to be doing well; We're still taking each day as it comes but she's obviously a fighter as so many have said... Hope to give you some more medical blurb soon!
Phoebe wrapped up before her Kangaroo Care
Some 'QT' with daddy!
3/4 of the family... Laura holding Phoebe's evening meal!

Wednesday, 21 January 2009

Our girls...

After two of the longest and hardest weeks of our lives, things seem to be a bit brighter today! Last night Laura went to the hospital and held Phoebe for the first time; She had about 40 minutes of skin to skin contact with her which she absolutely loved. Although I wasn't there, Laura was amazed at just how small little Phoebe is when she's in your arms. I'll be having some time with her tomorrow, so I'll post from my perspective. 

From a medical point of view, Phoebe appears to be doing really well. She is breathing on her own again (with the support of C-PAP) which is really good news, and she continues to gain weight, now sitting at 1064g. They are increasing the quantity and regularity of feeds every 12 hours, and she is loving Laura's 'Gold Top' milk! 

Gracie is on brilliant form also... She's been very unsettled the past couple of weeks, but the last day or so has returned to her old self with lots of singing, laughter and some fantastic one liners! 

 It feels like even though we have a long road ahead of us, things are getting a little easier. We hope and pray this continues and that both of our gorgeous girls begin to thrive as we attempt to settle into life here in Canada.
Phoebe back on the C-PAP Hat, and thriving!
Gracie catching up with her favorite blogs

Monday, 19 January 2009

In other news...

Between trips to the hospital we're starting to have a little bit of a life! Laura's mum is with us at the moment, and today we went out to do something fun for the first time in about 2 weeks! We went out to a little place called Fort Langley which is a pretty little town on the river, just north of Langley. Thought a few photos wouldn't go a miss! 

The wonderful house that we're staying in...

Phoebe's into her second week!

Phoebe continues to do really well and is now into her second week. Today she had the lines removed from her belly button which is great news; They discovered that she does have an infection in her blood, so along with a course of antibiotics this should help to clear it. She now has an IV in her hand, her respiratory tube in her mouth, and a feeding tube in her nose! Saying it like that makes it sound like a lot, but it feels SO much less than yesterday even! She had some more blood today which is also good I guess, although not sure what purpose it serves! You can never have too much blood though right?

She has gained some weight which is really good news - she's now weighing in at 1008g which isn't bad at all. We had a lovely visit with her this evening and were able to change her nappy, wash her eyes and mouth, and take her temperature; It's slowly feeling like Phoebe is actually our baby! I spent some lovely time sitting with her holding her hand and chatting to her - she opened her eyes in response which was very cute! She doesn't say much yet though. The 'tintle tintle' videos are a long way off yet! 

Laura and I went to the doctors today too which was good - I've got antibiotics for bronchitis, and Laura still has the rattle in her chest... I've told her to stop eating Phoebe's toys. On a serious note, we could really use some prayer for our health as a family... It would be great to get rid of these minor ailments and return to full health. 

Here are some photos from tonight; Phoebe's first ever 'tummy time' 

Sunday, 18 January 2009

Almost a week old...

Phoebe will celebrate being alive for a week in little under 12 hours; SO much has happened in the last week, so I'll try to fill in some of the gaps that you have missed. Firstly it's important to say that a LOT can happen in a day in the NICU... one moment your tiny baby appears to be fighting with everything it has, and the next it is stable again and looking very content. As you can imagine this is a huge roller coaster for us emotionally, so please bear with me if I get details wrong, or miss them out completely!

Following Phoebe's blood loss, she has received a number of blood transfusions to keep her blood count up... We expect this to continue throughout her stay at the hospital so forgive me if we don't document it every time.

Within a couple of days in the NICU, Phoebe established her breathing brilliantly and was able to have her breathing tubes taken out and put on a CPAP (Continuous Positive Airway Pressure) which looks rather like a fighter pilot mask; This essentially gives a little pressure to the lungs, enabling Phoebe to initiate the breathing work herself.

This has been a fantastic step forward, although today she had her breathing lines put back in as they think that she had probably exhausted herself; It seems she was forgetting to breath so we're happy that they're giving her some assistance with it even though it feels a little like a step back. With that said, we expect that she'll have to make one step back to be able to take 2 steps forward; Once she builds up some energy again they'll return to the CPAP and she'll look like Maverick again!

Her blood pressure continues to sit at a normal level which is fantastic; They are confident that this should remain at a good level despite having a few moments where it has dipped - they are able to explain why it has gone down which is really good.

Following another ultrasound of her heart this morning, they are still confirming that the Ductus Arteriosis remains closed which is fantastic news; It is still quite possible that it will open again, but for the moment it doesn't look like it's an issue.

Phoebe's Platelet levels are still low, but they have noted a rise in these and they hope that they will continue to rise over the next couple of days.

Laura has been pumping milk every 3 hours for the past week, and will continue to do so until Phoebe actually comes home to us, and the great news is that within the last 24 hours she has started taking some milk through the feeding tube in her nose. They are giving her 1cc every 4 hours, which is like getting a tablespoon a day! She's not got a great appetite yet, but she's a K-S so I'm sure that will come.

The lines that go into her belly button will be removed in the next day or so, and they will replace those lines with a soft IV that will be able to stay in her arm or leg for a longer amount of time. Currently she receives a wonderful cocktail of drugs, fat, protein and goodness knows what else through these lines, so we're keen that she keeps this up in a different form.

Laura and I have had some really good times with her over the last week... Laura assisted with the change of a nappy on Friday, and took her temperature today. It's obviously hard coming to terms with not actually getting to hold our baby and not getting to take her home, but they think that Laura will be able to do some Kangaroo Care (Skin to Skin) within the week if things go well.

She really is a gorgeous little girl and we are SO proud that she is ours. She is a little fighter, and is already showing us that she's got something special about her. We are taking each day as it comes, and trying our best to remain positive about Phoebe whilst at the same time trying to settle into life in Langley, and look after Gracie. We're feeling very supported here which is fantastic and the church are being wonderful with us.

While this is a really tough time for us amid uncertainty, confusion and frustration we have really felt God looking after us over the last 2 weeks. Pheobe faces an uphill struggle as any 26 week old premmie does, but we're confident that God is on our side and will sustain her in this fight. We know that God has his massive hands surrounding her tiny body, and we know that his love is sufficient for all our pain and hurts when things haven't gone to our plan.

We're SO grateful for the HUGE support that we've received from our friends all around the world, and have felt so at peace knowing that people having been praying for us on every continent (bar antartica, but lets face it there's not really anyone there anyway!). We'd love your conitnued prayers as this is going to continue to be a huge strain emotionally and physically for all of us.

Phoebe is about 1hour away from us, so getting to see her is a mission in itself; We're already feeling the pressure of having to divide our time between 2 adorable girls, and we don't see this getting any easier in the future. Gracie is surviving, but not thriving... She is really missing her routine with Laura, and this is giving us all a lot of heatache and sleepless nights.

Thanks SO much for all your prayers, messages and emails... we hope to reply to them all in time, but please bear with us while we do! Lots of people have been asking for an address to send cards etc so if you fancy popping one in the post, you could send it to us at this address.

20719 - 48 Avenue, Langley, BC, Canada

From here on in, I will keep updates regular and to-the-point and will keep photos coming regularly as we get new ones. So here's some photos for you... I know that's probably all you wanted!!!
Laura with Phoebe just hours after delivery
And me...
The overwhelming amount of support needed to sustain little Phoebe
Phoebe on day 2 - looking much perkier!
In her new permanent home... Bay 17 of the BC Womens NICU!
Phoebe and her CPAP and designer eye-wear!
Her name board... Still needs some artistic flare!
Phoebe receiving a cardiac ultrasound this morning