Wednesday, July 28, 2010

Dear friends and family...

Thank you all SO much for all the messages of love and support that you have sent over the past week or so - we are sorry that we have not been very good at responding to emails - but my sugar-high has left me with blurred vision (which should resolve when my sugars stabilise), so I have not been able to read or use the computer...

Yesterday I went and bought some cheap glasses, so I can now see - although I would prefer to have my 20:20 vision back, I am quite enjoying the novelty of my new 'intellectual' look!

So let me update you on what's been going on...

We had a lovely time with Grandpa G staying - again we can see God's grace in the timing of his stay... if he had not been here, Ed would have found it very hard to come and visit me in hospital...

Daniel loved getting to know his Grandpa... they became firm friends and Daniel loved the ridiculous songs his Grandpa made up about him!

Grandpa G left on Sunday - and my Mum arrived! They crossed for a few hours, which was fun.

We are SO grateful and glad that Mum is here. She HAS to get the 'Best Mum in the World' award - we have worked out that the ONLY month she has not been in San Francisco since October last year is February!

It is a big sacrifice, being away from my Dad and all her friends and 'life' back home - not to mention the fact that she's missing the summer holiday she and Dad had booked... all for her little girl - I am a very lucky daughter to have her as my Mummy!

So, Daniel is now getting the chance to get to know another of his wonderful grand-parents! Smiles abound! And I am getting the help and support I need in getting meals on the table, having someone to watch Daniel when I need a rest and generally getting my head round the implications of my diagnosis...

I am feeling slightly less overwhelmed by it all. Diabetes stinks, and I have to constantly battle the temptation to give in to fear... but, miraculously, I am feeling OK. Nurses and doctors keep asking me whether I want/need counselling as a result of all I've been through - and really, I SHOULD need it, but, incomprehensibly (humanly speaking), I really am feeling OK... low at times, but generally OK! Praise God!

Daniel continues to astound everyone with how strong he is. We had an appointment with the respiratory doctor yesterday and she kept saying 'he looks really good'! She has agreed to let him come off the oxygen throughout the day, which is wonderful. This weekend we are getting a 'saturation monitor' which we will use during the night to check whether Daniel's O2 sats stay OK on room air when he's sleeping deeply. If the results of that trial look fine, then we might be able to say goodbye to all tubes and canisters!!! Finally, I might just have a tube-free baby!

He is an absolute joy. I'm sure he's the best looking, most gorgeous, talented, funny, cute, well-behaved and good-natured little boy that has EVER been born... of course, I am totally objective in my assessment of him!!!

Saturday, July 24, 2010

The other day the verse where Jesus tells Peter that Satan has asked to 'sift him like wheat' but that Jesus has prayed for him 'that his faith would not fail' kept running through my mind... it feels as though the Gilchrists are being 'sifted'!

However, despite the fact that this year has royally SUCKED, I keep being blown away by the evidence of God's grace and His restraining mercy throughout all we've been through...

Some examples:

1) In the car crash last June, I walked away unharmed when the police said I should have died.

2) My Dad's heart attack was caught just in time so that his heart was not permanently damaged and he didn't die.

3) Ed got home to see his Mum on the day she died.

4) Joshua's heart kept beating until week 24 - the earliest the boys could have been born and stand any chance of survival.

5) The more we find out about my pregnancy (now knowing that I had diabetes as well as everything else), the more we realise what an absolute miracle it is that we have a healthy, 'normal', beautiful baby... really, humanly speaking, neither of our babies should have made it.

6) Being born in his 25th week, Daniel had only a 50% chance of survival - there were SO many things that could have gone wrong and yet, even though we had some rocky moments, he has come through it all unscathed - the pediatrician is amazed how strong and healthy he is!

7) When we saw my GP on Weds, she said "there is definitely someone looking after you" because she apparently NEVER checks her work emails over the weekend - but just as she was going to bed she had a sudden urge to check - if she hadn't, I would have gone to bed and may well have been unconscious by the morning, my blood sugar was that high!

... there are many more examples I could give where the Lord has limited the evil that could have happened. We are still walking through the toughest year of our lives, but I believe that God is with us and is using all this to refine and strengthen us - and to help us fix our eyes and our confidence on things unseen...

Monday, July 19, 2010

Praise God! I'm HOME!!!!!!

I am diabetic. Yikes! They will do all the blood work later this week when I see the endocrinologist to find out whether I am type 1 or 2. Currently, their best guess is that I am a type 1.5! (i.e I am still producing some insulin, but not enough...)

It is all slightly overwhelming. I have to finger prick to check my blood sugar and inject insulin before every meal and before bed (and any other time I feel strange) and (biggest bummer of all), I have to count and restrict my carbohydrate intake... it's pretty depressing how small my portion sizes of anything that tastes good will now have to be! But at least they are not saying I have to cut fun foods out altogether!

My last blood sugar reading was 126 - which is great. I am still feeling the effects of my roller-coaster blood sugar ride - fatigue, blurred vision and tingling in my feet and fingers, but apparently these symptoms will improve over the next few days.

My Mum is (yet again!) jumping on a plane to come out and look after her little girl. She arrives on Sunday - so will overlap for a few hours with Ed's Dad - and will stay for at least 6 weeks. I am SO grateful to her and my wonderful Dad for being prepared to drop everything and come out. I really need her now since the work of monitoring and stabilising my blood sugar will take a while - on top of caring for my delicious (but demanding!) newborn son!

God is good. Amazingly, through this I have been able to trust Him and not get angry that yet another thing has 'gone wrong'. Maybe I am (at long last) learning to accept HIS will, even if it doesn't agree with my own!

Annus Horribilis, Chapter 6: Diabetes

For the last week or so, Nicci had been thirstier than she had ever been before. She would be drinking about 7 litres of fluid a day and still be thirsty. She had also lost about 20 lbs in weight in 2/3 weeks. We had put this down to breastfeeding, and fatigue, and the hot weather... but as Nicci was discussing it with some friends on Wednesday evening, Taylor Buzzard (soon-to-be-mother-of-three) said perhaps a visit to the doctor would be wise: some weight loss might be expected when breastfeeding, but not 20 lbs!

While the doctor agreed the symptoms were concerning, she didn't think it was anything overly serious but did order a precautionary 'fasting' blood test to check blood sugar levels. Nicci took the test on Saturday morning as Dad and I waited in the car with Daniel before she dropped us off at the train station for our day trip into San Francisco and Alcatraz!

(Dad arrived on Tuesday evening last week and is with us for about 2 weeks. It is great for him to be able to meet Daniel for the first time, and for three generations of Gilchrist men to hang out together).

While Dad and I were in the city all day, Nicci went off with Daniel to our friends Vic and Briana Ishida's baby shower, (their daughter is due in a couple of months), which was up in San Bruno (about 14 miles north of us up the freeway), and then later to a girls' hang-out (where Daniel showed himself to be a true ladies man in the making) at Caitlin Arnold's house in Mountain View, which is 19 miles south of us down the freeway). There were times during the day when Nicci felt a bit dizzy - but pushed on through, spending quite a bit of time at the wheel alone in the car with Daniel in the back.

We all met up back at home again at about 9.30pm and settled Daniel down and were getting ready for bed ourselves when at 11pm our doctor called, having got the results of Nicci's earlier blood work. Her fasting blood sugar levels were at 320mg (normal being more like 100-120mg). She said we should get her to A&E and that it was a miracle she hadn't passed out behind the wheel during the day.

So I took Nicci back down to Stanford where she had her blood tested again. Her initial reading was off the scale of the litle pin-prick machine they used (it just said > 500mg), so they drew some more blood and found her to be at 920mg!! They hooked her up to an IV drip to re-hydrate her. One doctor said that it was likely she was 6 or 7 litres low on fluids (no wonder she had been so thirsty) and again, everyone couldn't believe that she had WALKED into the emergency room given her astronomically high blood sugar levels. This was all happening between midnight and 2am on Saturday night / Sunday morning.

Brief interlude here to say that, while it's natural to keep score of the catalogue of things that 'gone wrong' in the last 12 months, it is a better discipline to count our blessings. What amazing timing that this should happen while Dad was staying with us so he could stay at home with Daniel! Just like it was amazing timing that Nicci's parents were with us when she had that heavy bleed during pregnancy and was put on strict bed-rest. God is good, not only that we had a keen and able baby-sitter on hand - but also for keeping Nicci from passing out during a busy day when I was not with her, (and also just because he IS!!). Anyway, back to the small hours of Sunday morning....

Nicci had been hooked into the IV line and lying on a bed out in the corridor as it was fairly busy in A&E. Being a Saturday night, added to the those coming in with more 'domestic' complaints were people being treated for wounds sustained during pub brawls etc! One guy walked past us who looked like he had come off worst in his particular punch-up...

By the time Nicci was being hooked up to her third bag of fluids we were wheeled out of the corridor and into a room between an elderly lady who had had a fall and someone else whose complaint I don't recall.

By now, they knew it was Diabetes and they started giving her insulin, and constant fluid replenishment. I left Nicci in their capable hands and got home at about 3.15am to find Daniel sleeping peacefully. He woke up for a feed at 4am and then slept through until about 9-ish. We had been led to expect that Nicci would be discharged on Sunday morning, so I insisted Dad should continue with his plan to go on from his visit to some Russian Orthodox friends in Modesto and head out to see Yosemite. Having seen our photos, Dad was keen to see the awesome landscape for himself...

Nicci had suggested that I call the pediatrician to inform them of Nicci's diabetes and to ask whether it was of any relevance, or hand any knock-on implications for Daniel.... Daniel looked fine, but the nurse on the other end of the phone said I should bring him in as I'd said he'd been pretty sleepy. I needn't have bothered. In the doctor's surgery he was Mr. Perky-perky, all smiles and flatulence and the doctor said he looked and sounded great. They weighed him, and he's now 13 lb 8 oz - just half a pound away from the 1 stone threshold! What a Belter!

From there I went and picked up Heather Lux, a friend of ours who had very kindly offered to help me fix some things together for Nicci, whose stay in hospital we now realised was going to be longer than we had first anticipated, and to look after Daniel while I went in and delivered them. Nicci was able to leave her room and come down to an outdoor patio area in the hospital and meet us all there. It was a lovely tearful reunion of mother and child. Nicci was able to relieve some breast-pressure and give Daniel a good ol' fresh-from-the-source feed. (While Nicci has been in hospital I've been using some of the frozen stuff we'd collected over the last couple of months, which he's been taking without too much fuss - but he does prefer the fresh-stuff.)

The doctors had been having a hard time stabilising Nicci's blood sugar - she had responded well to the insulin, but her levels went the other way such that she became 'hypoglycemic' with low blood sugar levels. So they needed to give her some sugar, which then sent her high again... I trust we are zero'ing in on the right doses etc as we come to land on the right balance with the accuracy of a lazy mosquito.

With these wildly fluctuating levels (but mostly still high at around 400mg), the walk to the patio area and the breastfeed kind of took it out of Nicci, so Heather took Daniel back to the car and I took Nicci back to her room and bed. As I was walking back I got a text from Dad, who had just got himself a mobile phone-on-the-go so he could be in contact. When he heard that Nicci was to be staying longer in hospital he immediately ditched his plans, turned the car around and away from the direction of Yosemite and came straight back. What a great man! It has been amazing having him here.

When I got home, having dropped Heather back to her place, I put Daniel down and tied up a bit before he woke up for another feed. The doorbell rang and it was Caitlin who, unexpectedly, had been to a Thai take-out place and had got us dinner. What a great friend! Once again, the arms of God's love are being extended to us through those of his people. God is good. And we are hugely grateful to those dear friends back home in Arborfield and Barkham who have been praying since they heard the news via Colonel Bruce.

When Dad arrived home we went in convoy to the car rental office to return his car, and then came home to eat the delicious Thai food that the Arnolds had generously provided. And then to bed....

Daniel is awesome. He fed before we all turned in at about 10.30pm, and slept through until 4am when gladly took a good amount from the bottle and didn't make a fuss in being put down again, whereby he slept through again until 7.15am. Having had a lot of close-up time feeding him in the last couple of days I am seeing that he really has Nicci's eyes - which makes me love him even more, if that were possible!

Having fed him, I left him with Dad and went to check in on Nicci at the hospital. I arrived as the Doctor was explaining various bits and pieces about what's next etc, and how they hope to discharge her later this afternoon :-) Then the Diabetes specialist arrived and presented Nicci with her new toy: a blood sugar measurer. Nicci immediately warmed to this woman when she saw that she had picked her out a pink one. So finger-pricking is to be a feature of at least the next few weeks, if not the rest of her life!

Nicci remains in amazingly high spirits, although is still feeling the dizzy-ing effects of her continuingly fluctuating blood levels. We were both encouraged by what had been reading in the Bible this morning: Nicci was in Psalm 73: "25 Whom have I in heaven but you? And there is nothing on earth that I desire besides you. 26 My flesh and my heart may fail,but God is the strength of my heart and my portion forever." I was in 2 Corinthians 1: "For we were so utterly burdened beyond our strength that we despaired of life itself. 9 Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. 10 He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. 11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many." In God we trust! And we are so grateful for the help of your prayers!

It remains to be seen whether Nicci will indeed be released this evening, but it's great to have Dad to look after Daniel while I do all the stuff that's going on at work - it's our big financial reporting day, following our most recent internal financial re-forecast. From what I hear, all is well at home. I'm heading back there now to check in on things, and hope to have some good news from the hospital soon....

Wednesday, July 7, 2010

Yesterday we had another eye check-up. Daniel was very brave (as usual) as the nasty doctor prodded and shone bright lights in his eyes. He's such a trooper (Daniel, that is, not the doctor!).

The good news is that Daniel's right eye is almost completely 'mature', with only a small area of 'immature', and his left eye is about 1/2 immature/mature... no retinopathy! All good news!

So we are starting the weaning process on the oxygen! Yesterday he spent about 3 hours in total off the cannula - which he absolutely LOVED!
So, here is the first photo of our boy with a naked face (it was towards the end of his time off the cannula - he had been smiling, but by the time I thought to take a photo he'd had enough and would only give me a grumpy face!) Now you can appreciate those chubby cheeks in their full splendour! Roll on the day when we can free him from facial stickers for good!

Daniel, at the end of a hard days hiking in Yosemite!

Monday, July 5, 2010

We have just had THE most LOVELY few days away as a family in Yosemite! The FIRST Gilchrist family holiday!!! The sun was shining, the scenery was breath-taking and (the only down-side), the mosquitos were biting! (I counted 55 bites this morning and Ed had over 30 just below the knee! Yikes!). Thankfully, the bears weren't around to try...

Daniel is now hardly coughing at all. He has fought off his first cold admirably - AND, because he was slightly under the weather, he was sleepier than usual, meaning he was perfectly content to be snuggled close to his Daddy in our 'Ergo carrier' for most of the day while we enjoyed the awesome scenery of Yosemite! It could not have worked out better - if he'd been his usual, perky self, we would not have been able to do half the walks we were able to do AND it means his immune system has had a bit of a work out - The Lord knows better than we do what we need! We just need to learn to trust!

We travelled up late on Thursday and arrived after dark. Friday morning we had a lazy morning and then headed into the Yosemite valley for a delicious lunch at the famous Ahwahnee hotel, followed by a short walk up to see the lower Yosemite falls... an easy day to start us off...

On Saturday, we enjoyed a lovely lie-in and then headed into the valley again for a 10 mile walk around the Yosemite valley. The sheer cliffs rising vertically all around, the cascading waterfalls, the wide meandering rivers and the lush green meadows were an absolute treat to see. The only significant bummer was that the mosquitos were enjoying the scenery too and obviously had not fed in quite some time! The Gilchrists provided them with breakfast, lunch and dinner (thankfully, they did not seem interested in eating Daniel - a mystery, since he's clearly the tastiest of the 3 of us!). There are some pretty fat mozzis in the Yosemite valley right now! We ended the day in the hot tub at our accommodation while Daniel had a nap - SUCH a treat to ease aching muscles!

On Sunday, we caught the early bus up to Glacier point and from there (at an altitude of 8000ft) we were able to look down on the valley and all the magnificent rock formations... we then spent the day hiking down into the valley - an 8.5 mile trek. Hot, hard but TOTALLY worth it! The scenery was absolutely breath-taking. As we passed other walkers, people kept exclaiming "it's a baby!" - they couldn't believe that we had been able to bring Daniel with us all that way - but he was as good as gold. He only cried when he got hungry - and then we stopped and found a shady spot for a breast-feed. For the rest of the time, he mostly slept or looked around, taking everything in from the safety of his pouch next to Daddy's chest - baby bliss! It was a magical day.

When we reached the valley, we realised that the rest of the world had come to Yosemite (it was the July 4th weekend!) and decided that travelling back today (which is what we had planned) would be horrific. So we packed up and left at about 9pm. Daniel slept the whole way home. We had a clear run home and we are now enjoying a lazy family day at home - catching up on the Wimbledon Semis and finals... poor old Murray!

Thursday, July 1, 2010

God is good! Although Daniel's cough did get worse yesterday, it improved overnight and has never gone down to his chest. The doctors have checked his saturation levels and he's sat-ing at 98%. Although a little bit snuffly, his nose has never got blocked - so he's been able to breath; and he seems to be fighting this cold admirably!

This morning we were given the go-ahead to go to Yosemite by the pediatrician.

Thank you for your prayers. It's been a lesson in trusting even when things haven't gone exactly as planned. Now pray that he doesn't get eaten by a bear in Yosemite!