Slowly but surely.... progress!

Hi all,

Apologies for the delay between updates, but it's been tough to get any time spare now that I'm juggling work with Hospital - I know, excuses excuses! (I'm currently typing this update from my desk in the office whilst munching down my lunch!).

So - what's the latest?, well, I'm pleased to say that it's been a positive few days.

Alice has surprised us a bit by continually progressing her breathing. I've mentioned previously about the mix of oxygen being quite low at around 24%, which is great and has continued. However, the level of pressure pumping the air in has also now been reduced. Just to give you context/reference point, the level has been stable at "7" for a good few weeks now, meaning that alice doesn't have to work as hard to draw the air in.

About a week ago, the doctors decided to reduce the level of pressure to 6. All good. No change. hurrah!So, it was reduced again to 5 a couple of days later. Still all good. As I type we're now on level 4, which is fantastic! (or "amazeballs" for the youngsters out there?!)

Now - We're keeping an open mind and not getting too carried away, as we all now know the rollercoaster is perfectly capable of going the other way at a moments notice.... But... Let's assume for a moment that she continued to be stable on low levels of oxygen and lower pressure over the coming days, the next steps would be to switch over to the final stage of breathing support - which is called humacare (spelling probably not accurate!). This is basically a small wire and prongs which go up the nose, removing the need for a full mask to be trapped onto her head. It provides only a small supplement of oxygen on a low pressure, meaning she's breathing more on her own, but just as importantly, we'll be able to see her face :-)

Other bits to update you on:

• Weight - a mighty 1 pound 10 ounces now.
• Heart - the duct that I mentioned previously that needs to close has shrunk a little bit, but still not closed. The approach is the same though, it's not causing her any problems so we continue to keep an eye on it. There is every chance that it might close on it's own, if not, medication and then surgery are the next steps.
• Head - She's really having a good look around now, although sight and hearing tests aren't conducted till around 6 weeks I'm told, it looks like she's already holding her gaze on us and reacting to our voices. Which is great!
• "plumbing" - yes, it all works. Enough said. Although she is developing a habit of waiting for the nappy to come off before "opening fire"!
• Noise - no sustained crying yet, which is apparently normal, just the occasional squeek or shout. I'm assured that she'll make up for this in time, so no complaints here.

Finally - conscious that I'm doing the updates on here at the moment, I need to say at this point that Catherine is doing an amazing job being Mam. Especially now that she's on her own looking after Alice every day at the hospital while I'm at work, hosting visit's from family, doing the morning cares, expressing milk every few hours.... all this whilst coming to terms with having our first baby stuck in an incubator for 5 weeks (with at least another 12 to go). She truly is superwoman!

That's it for now, but coming soon.... clothes, more milk and hopefully entry to the "1 killogram club"

Thanks

Geoff

p.s. here's a pic the nurse got whilst her mask was off the other day :-D :

Afternoon all,

It seems like a good time to give an update on how things are progressing:

The rollercoaster "dipped" on Sunday night unfortunately. We recieved a call at 6am Monday morning to notify us that Alice was needing lots of help breathing and as a result she had to go back on to the more powerful version of CPAP with a heavier mix of oxygen. At the same time she encountered some problems with her tummy and bowels, so feeding was stopped whilst the doctors reviewed her. The decision was quickly made to get her on a broad spectrum of anti-biotics to treat any potential infection. (Each time any symptons of an infection are presented a blood test is taken and senf off to the lab, this takes at least 48 hours for the results to show, but rather than wait the doctors just pump in the anti-biotics anyway. Better to be safe than sorry!).

What didn't make it any easier was that I'd decided to go back to work on Monday morning, so was a little pre-occupied whilst we waited for her to stabilise. But as usual, my awesome colleagues at Sage were more than understanding :-)

The good news is that by Monday afternoon breathing had improved - so back onto CPAP. Amazingly, within a day of going back onto CPAP, Alice's required levels of oxygen were lower than before the weekend, needing only 24% (remember - we breath 21.8%). Even better news was that yesterday we recieved the results of the blood test which showed no infection.

So, It's Thursday today and the rollercoaster climbs once more. We started slowly once more with the milk and some nutrients so as not to overload her, keeping a close eye on tummy and digestion as we go. Despite all this, her weight remains at 1lb 9 ounces, but she has grown a bit in length and her features look a bit more developed.

Other good bits include:

• Both eyes open regularly and having a good look around, she's holding her gaze on us a bit now when we talk, which is a good sign.
• Shes still very active and as soon as the nappy comes off her legs and arms are waving all over the place
• She's smiled a few times, although we're not sure if this is wind or general contentment!
• Her legs are now a mighty 75 milimeteres long!!!

I'll leave it there for now, but will stick up another picture later on this week.

Thanks

Geoff

1 eye open :-)

Update number 1 and a bit of background

Well, this is my first attempt at a blog, so bear with me! 

When Catherine and I decided to have a baby we didn't expect it to happen this quickly!

I decided to create this blog as a way to keep everybody updated on Alice's progress, to avoid having to send out tons of texts and messages each day/week etc.

First and foremost, some information to remind you all about how this all started...

Alice Elizabeth Watson was born on the 14th August at 6.20pm, just under 16 weeks earlier than expected. She weighed in at a hefty 1 pound 6 ounces !(620 grams). Due to the need for intensive specialist care she was delivered at the RVI in Newcastle, so yes, she's a proper geordie. The doctors (more on these rather amazing people later) worked on her for 10 mins to stabilise her breathing and placed her into a plastic "rosti" bag to keep her warm. After a few hours we were able to go and see her in the flesh, albeit through an incubator window, which was rather a shock for us both in terms of how tiny she was and the tangle of wires plumbed into her. The constant hissing and beeping of machines was very intimidating as we didn't know what the hell most of them were actually doing. 

Throughout the following days we watched, waited and started to get involved with her "cares" twice a day. This consisted of cleaning her face and mouth, changing the miniature nappies and applying cream to any dry skin. I can't quite explain how valuable these little 10 minute sessions were to us, as it's the only time we could actually do something for her, other than stare at her through the incubator. 

So, where are we now? It's Saturday the 8th September and she's almost 4 weeks old. There have already been a few steps forward and few back, with a whole lot more to come. I've decided to give a bit of detail on a few areas below, as they are the most common things people are asking about:

Breathing - Alice is currently breathing with the help of something called "CPAP" which is continuous positive airway pressure. This provides a flow of air which is richer in oxygen as she's not developed enough to breath normal air on her own. The good news is that as of today, the nurses have managed to reduce the level of oxygen to between 24-30%, which is great considering only last week she was on 40-50%. To put that into better context, we currently breathe 21.8% oxygen, so the close she gets to that the better. Despite these improvements though, there are occasions where Alice starts to "shallow breathe", which means she's not taking in enough air. Most of the time she corrects this herself, but there have been a few incidents where a nurse has had to intervene and either increase oxygen or give her a little "nudge". 

Feeding - Catherine is expressing breast milk every 2-3 hours, this is then fed through a tube directly into Alice's stomach. We started out with 0.5 mil per hour to make sure she could process and absorb it, this has been gradually increased over the last 4 weeks and as of today she's receiving 4.9 mils per hour, which is close to the maximum she can have based on her weight. 

Weight - Alice dropped to 1 pound 4 ounces in the first week, but soon put that back on and is currently just under 1 pound 9 ounces. I think the nurses give her a special badge once she gets to 1kg. :-) 

Heart - all babies have a small duct in their heart that is supposed to close between 34-40 weeks or at birth. Due to Alice being so small, hers is still open. At the moment this isn't causing any obvious problems so the Doctors don't want to do anything about it, they do expect it to close up normally over the coming weeks. However, if this doesn't happen or if there are signs that it's starting to cause Alice problems, they'll consider medicine or worst case scenario a small operation to close it up manually. 

I'll stop for now, partly because that's a lot of info to read and partly because I'm off to the hospital again. 

Both myself and Cathering will update this blog as much as we can, so thanks for reading and keep those fingers crossed!!!

Geoff