Monday, March 29, 2010

Hey there!

Since Ed had to go up to Saltlake city for work anyway last Friday, he thought he'd stay and squeeze in a day on the slopes before heading home...

He had a lovely day snow-boarding – apparently it was perfect conditions – bright sunshine and powdery snow… but on his last run of the day he caught an edge and slammed down hard on his right shoulder (he later admitted that he had been admiring his style by watching his shadow rather than concentrating on the snow in front of him! duh!).

Being the trooper that he is, he managed to complete the run, return his hired equipment and fly back to me before seeing a doctor.

We went straight to A & E where his shoulder was x-rayed (we were there until 1am!).

He has separated the shoulder joint (ouch!) – it’s very painful and he has an impressive looking bump right now, but it may not need to be treated. At the moment he is just taking strong painkillers and wearing his arm in a sling. We are seeing a specialist later this week and they will assess and decide whether surgery is needed.

Open season on the Gilchrist's continues! It seems that the Lord is allowing just about everything that could go wrong to go wrong at the moment... to top it all off, we woke up to find we had a flat tire this morning! Grrrrrrr! Having said that, we're in good spirits and grateful that Daniel seems to be doing well...

Friday, March 26, 2010

Our little boy is doing well! He had his first eye examination today and, although his eyes are still (unsurprisingly) immature, there is no evidence of any abnormality caused by the oxygen he has received. Praise the Lord! He will have weekly check-ups until he is discharged from hospital, but today's result was encouraging!

One of the nurse practitioners told me today that the whole team is really pleased with how Daniel is progressing. He is steadily gaining weight (now 1300g!) and is gradually being weaned off the CPAP oxygen delivery system. It is hoped that by next week he will be able to progress onto nasal cannula for his oxygen - and at that point, he will be able to move downstairs to the step down NICU - one step closer to being able to come home!

Wednesday, March 24, 2010

Oh, ok then! I'll let you see some MORE super-cute photos of my precious son! (I am afraid Ed and I have succumbed to the universal parental affliction of thinking that everyone else is as taken with our offspring as we are!)
These come with a great big shout out to my great friend Zoe K who managed to find and send me an outfit for babies weighing 1.4lbs - it's still a bit too big for him, but it is SUCH fun to be able to put him in clothes!

And, for those of you who like having all the gory details, here is a photo of Daniel's manly scar. The orange shiny patch all around it is the glue, yes, GLUE they used to stick the wound together! It looks as though it's healing well and we're pretty sure Daniel is proud of it already!

(also, for those of you who are particularly observant, this shot gives you a sneaky glimpse of my enormous breast-feeding Pami knockers... sorry if that's unhelpful, it's just such a transformation, I may as well brag about them while they last!)

Friday, March 19, 2010

I got to hold my boy today for 2 hours AND I heard his voice for the first time!!!

He has been silent until now because the ventilator tube has blocked his vocal cords. But now that the tube is out, he can produce sound! He has the cutest little voice (even when he's crying)... I'm told that his voice will get louder as he gets bigger, but right now, it's delicious!

Although he obviously finds the CPAP (the oxygen delivery system) uncomfortable, as soon as he got into my arms this morning, he settled into a deep sleep and was completely at peace for the entire time. It felt good to see that being close to his Mummy is obviously comforting for him... makes me feel less redundant during this time when I am not able to be as 'hands on' in my mothering as I would like to be!

Thursday, March 18, 2010

We have just had THE most wonderful time with Granny Russell here with us! Thank you SO much to all you generous friends from our church back home who paid for her flights! I REALLY needed my Mummy around this week as Daniel was operated on. Apologies that we have not been keeping the blog up-to-date, let me fill you in on our news!

Daniel recovered well from the ductus surgery and, after a few days of being fairly groggy, he rallied and became even more alert than he was before the surgery. He now opens his eyes for periods of 1/2 hour or more and is obviously looking around and responding to noises around him... he is also becoming a LOT more feisty! He definitely knows what he likes and dislikes and is not afraid to throw his weight around even though he is still SO small!
Daniel got to have a lovely cuddly time with Granny on Tuesday, which seemed to do him good. All the nurses commented that they enjoyed the lullabies sung in harmony by Mum and I... I think Daniel liked it too, although there was one occasion when we started singing and he crumpled his face into a very unimpressed frown! So hilarious!
Daniel was doing so well yesterday that the consultant decided to EXTUBATE!! After our 3 hour trial off the ventilator a few weeks ago, I am thrilled to report that he is STILL breathing on his own, and it has been 29 hours! Things are looking good, although he obviously does not like the oxygen face mask he is having to wear... hopefully they can wean him from that before too long.

One huge disappointment this week has come as we have started discussing the possibility of taking Daniel home to meet all our friends and family back in the UK. Because Daniel will have lung damage from the ventilator for the first 1 -2 years of his life, he will be very vulnerable to infection and so we have been strongly advised not to do an 11 hour flight with him until he is at least 1 year of age. Obviously we are GUTTED at this news, but of course, we are going to do what is best for our boy (if he avoids infection for the first 1-2 years, he is likely to have perfectly normal lung function long term). So, it looks like you guys will have to come out for a trip to SFO if you want to meet our little man!

Wednesday, March 10, 2010

The surgery went well! The surgeon just called and said that the procedure had been a success and had been conducted without any complications. Daniel is still asleep and will slowly come round in the next few hours. He'll be on pretty strong pain medication for the next 12 hours or so and so he will be out of it for a while. But it seems that all is as good as could be expected.

We could have a hard few days ahead of us as Daniel recovers, but hopefully, with this ductus closed, Daniel can now start to really thrive...

I think it's pretty cool that Daniel will be able to boast about his scar that he got before any of his peers were even BORN! How rock hard is that!

Tuesday, March 9, 2010

He's having surgery tomorrow

Overnight the PDA started causing Daniel more difficulties, and so the team has taken the decision to proceed with surgery. We don't have a time yet but, at some point tomorrow, our little man will go under general anaesthetic to have the 'Ductus' pinned shut. The surgery only takes 15 minutes or so, and will be done at his bedside, but he's likely to have a rough 2-3 days following the surgery as he recovers.

We're feeling pretty peaceful that this is the right thing for Daniel and confident that God is in control, but obviously it is heart-wrenching to think about someone so tiny going under the knife. As always your continued prayers would be hugely valued! It's great for Nicci that her mum is here for what is likely to be a tough week. Daniel has loved meeting his grannie!

Sunday, March 7, 2010

The sneaky little fellow bought himself some time!

On Friday, following a routine temperature check that showed 38°F, the doctors thought that Daniel might be fighting an infection. As he wasn't displaying any symptoms, it was good that they had caught it early. With the risk of infection, there was certainly going to be no way that they would operate to close up the PDA. However, they needed to do all sorts of nasty tests to figure out what the infection might be (they suspected pneumonia). He had a Lombard puncture to collect spinal fluid. He had a catheter placed up his... where us men would prefer not to have anything placed... to collect a urine sample. Not a nice day for him. But he managed through it without letting it get to him too much - and people commented on what a lovely character and personality he has! In fact, the nurses have noticed a peace (that passes understanding?!) in us which afforded us the opportunity to share our faith, which is great!

Anyway, back to Daniel... To look at him, none of the nurses believed he was fighting an infection: he was neither irritable nor lethargic, and tolerating his feeds very well. Indeed, all the test results came back negative and his temperature is back within normal limits, so: false alarm! But as a precaution, they are keeping him on antibiotics for a couple of days. But this episode has bought some time for him to gain weight and hopefully for the PDA to close up without the need for surgery. That is indeed still the doctors' preferred approach - to limit his fluid intake, but up his calorie intake (tricky to do... but they're clever) and hope he grows. As of yesterday he was 1,120g. We had thought of getting him an "I am 1" badge and writing a little "kg" next to it to celebrate this momentous milestone! Indeed, at a quarter to 1am tonight, Daniel will also be celebrating his one month birthday!! He's doing so well, and the Lord is sustaining both him and us through this time. (Note to self: we've found we feel a lot better about things when we've read the Bible in the morning than if we don't. Funny how that works...)

Reinforcements also arrive tomorrow. Nicci's mum is coming out to visit for a week. The original plan was for her to take over nursing duties for Nicci (who was still meant to be pregnant) while I went back to the UK for work. Well, clearly my plans got the kibosh, but it is great to still have Liz with us to be with Nicci during the days as she visits Daniel, to keep her sane and to get to hold her grandson! A BIG thank you to our friends back home in Arborfield & Barkham who very generously put in to pay for her flight!! You guys are awesome! (We're coming up for our 1 year anniversary of being in the States and, as you can see - we're adopting some of the lingo...)

Right. Shower calls, then off to church and then the hospital to see our boy!

Thursday, March 4, 2010

Since last weekend, (when Nicci and I both got to hold our precious son up close and feel his warmth and his small limbs wriggling gently against us) things have been somewhat up and down.

On Monday, Nicci was again able to hold Daniel for some special mother and son bonding.

On Tuesday, the 'leak' on the ventilator tube was beginning to cause Daniel some jip. I don't remember if we've explained this before but the 'leak' was caused by the fact that Daniel had grown out of the original tube they put down his windpipe to help with breathing. It's meant to be a snug fit, but his windpipe is now wider and so as air is pumped down through the tube it can escape from the bottom and go back up the windpipe and not all go into the lung... The doctors had planned to see if they could wean Daniel off the ventilator machine by the end of this week and so, given they had to remove his original tube to be replaced by a wider one that fitted him better, they decided to see if they could wean him sooner. So, for 3 hours our boy breathed on his own! They say some children they try an early wean on immediately look like they need assistance and so are re-intubated straight away. But not our lad! He did better than the doctors expected, but in the end the effort of breathing in and out was stressing his heart and so they did indeed replace the tube with a bigger one. Nicci was there for the whole thing and by the end of the day was emotionally wiped out.

On Wednesday, he had another stable day. He was back on reasonably low ventilator settings and Nicci was again able to hold him for about an hour. During that hour Nicci was actually pleased to be sicked-up on. She sees that as a rite of passage and now feels like a real mum!

Today they did a routine chest x-ray and saw that there was still quite a bit of fluid on his lungs and they were concerned that the 'PDA' (Patent Ductus Arteriosus, which is a heart-lung bypass tube used by foetuses in utero which closes up before normal birth) might have opened up again. The doctors ordered another echocardiagram (chest ultrasound) to see for sure. When we were there this evening we were able to spend a fair amount of time talking to the consultant/attending. The PDA has indeed opened up again. It doesn't seem to be causing him too much bother in that he isn't displaying particularly concerning symptoms - but it is holding him back from being weaned from the ventilator. He's been on the ventilator for quite some time now (all his life!), and the longer he's on it, the greater the risk of more long-term effects on his lung health. Already they are somewhat damaged, but this is common in premies. In short, we want him weaned as soon as possible. They could go in and surgically close off the PDA, and indeed that may well be what they have to do. Should that be the case, the procedure is meant to be fairly routine. It would be performed at his bedside, where he is now. They would go in through his back and 'staple' the duct closed. The tricky bit is identifying the ductus and not getting confused with all the other blood vessels and tubes that are in the vicinity. The closest analogy would be trying to diffuse a bomb - (do I cut the red wire or the blue wire...?), except all the wires look pretty much the same! While this seems pretty scary to us, we know that the doctors involved are very skilled and very experienced and that undergoing it is less of a concern than having to be on the ventilator for extended periods. But it is still surgery, which isn't without risks. And, for the moment, there are other avenues to pursue, like restricting his fluids and continuing to feed him lots of calories in the hope that he bulks up and it closes by itself... which is the route they are currently taking. We're sure they'll make the right decision and know that he is in the Lord's hands, but this whole journey is emotionally exhausting. Do please pray with us....

Monday, March 1, 2010

More photos of our little uber-hunk-in-the-making!

If you compare this to the one we took in his first week, you can see that his belly is now fatter than it was! He now weighs 1030g! We want him to get chubby and fat!

OH WOW! What a WONDERFUL weekend! Ed and I managed to have a lot of time 'chilling' together, which was HUGELY needed - AND we BOTH got to hold our son skin-to-skin. I had that joy on Saturday and then Ed got to hold him on Sunday! He is the softest, warmest most wonderful little bundle that has EVER been! It HURTS how much we love him!