Saturday, April 24, 2010

This week Daniel has been attempting to feed directly from the breast. Until now it's been via a tube straight into the stomach (a gavage). Sucking, swallowing and breathing are quite a complicated combination of activities for a boy who should, by rights, still be a month away from being born. But Daniel has done remarkably well. He's meant to have around 40ml of milk every 3 hours, and on a number of occasions he's managed to take up to 26ml directly from the breast, which is a great effort. The remaining 14ml is delivered via the gavage. At times, quite possibly depending on what Nicci had for dinner the night before, Daniel has been less keen to engage. At times, he's forgotten to breath! Burping him is quite fun.

Nicci joined me on a jog this morning: her first run since coming off bed rest. She did really well. We went about 4 miles without stopping and at a reasonable pace. We're off to hospital now for the 9.30am feed. I wonder whether the curry we had for dinner last night (mmmm... curry!), or the lactic acid that may have built up from this morning's exercise, will add to the flavour of Nicci's milk?

Monday, April 19, 2010

Hey there!

This weekend, Ed and I decided to take advantage of the best baby-sitting we will ever get, and headed off to Carmel for a romantic get-away before all the sleeplessness of parenthood is upon us!

We started Friday with a visit to our boy, and then drove down to Monteray. The sun was shining as we ate our lunch overlooking the ocean before we enjoyed the spectacular sea-life in the Monteray aquarium - awesome!

At about 4pm we headed to our B&B - the 'TicklePink Inn' - a spoily treat. Our room had a gorgeous view of the cove and the balcony where cheese and wine (4pm - 6pm) and breakfast each day was served had the most stunning views of the ocean. It was simply beautiful.

Saturday morning was spent enjoying the 17 mile drive around Pebble beach. It was fun to see the holes that Tiger and the other pros will be playing in June! After a lovely lunch we spent the afternoon relaxing in the sun before a picnic dinner on the beach watching the sun set over the ocean... magical!

Sunday morning was spent in our pyjamas. Then we enjoyed a quick Jacuzzi before heading home to see Daniel (I was aching to see him by this point!). I wish we could say that his eyes lit up when we entered the room and that it was evident that he had missed us terribly - but, he was asleep when we arrived and there was not even a flicker of recognition! I was comforted to see that our absence had not emotionally scarred our child - but I have to say, I can't wait until he's big enough to interact and recognise us a bit more!

He was a bit more awake today and had his first proper breast-feeding session (not recreational this time!). He put on 24g in one feed, which was pretty good - although he was exhausted afterwards! What fun! Each new milestone is fantastic - I just struggle not to get inpatient - I SO long to bring him HOME!!!

Thursday, April 15, 2010

Graduation Day!

Yesterday, Daniel was moved from the Neonatal Intensive Care Unit (NICU) down to the Intermediate Intensive Care Nursery (IICN). This marks a significant milestone towards him being able to come home, which is very exciting. He just wasn't 'sick enough' to be up in the NICU! The one sadness is that he leaves behind all his favourite nurses, Julianna et al., but the new team of nurses also seem great.

He's still rigged up to various monitors but we are able to be much more hands-on, which is fantastic. Nicci held him for about four hours today, either side of a special lunch she had with two lovely ladies from our church. They took her to an English TeaRoom place, which was apparently very authentic both in terms of decor and the food, right down to the Devonshire clotted cream. It was a real treat for her!

I'm taking tomorrow off work, so I'm looking forward to seeing him in the morning!

Sunday, April 11, 2010

My wife can hardly contain herself. With things looking positive in the hospital, Nicci has launched 'Operation: Ready Nursery' with great dedication. Grandpa Gilchrist very kindly bought us the cot/crib which arrived this week and together, with three functioning shoulders between us, Nicci and I built it on Saturday morning. "Today we salute you, Mr Furniture Assembly Manual Writer..."

You may spot a theme. Blue gingham is the preferred colour. Grannie Russell made the wonderful roman blind you can see top-right. The hanging quilt on the wall above the crib is Nicci's work of genius. Last time I flew back from England I had the little lamp under the monkey and the rug under the rocking chair in my luggage: both purchases from Laura Ashley. (Indeed, the rocking chair was another self-assembly effort).

Everything on our end is ready for Daniel to come home. We can't wait. He's looking more and more gorgeous every day. We call him "Mr Oh-so gorgioso". I'm still persevering with 'Belter' while Nicci insists on calling him 'sausage'.

We're off again for a quick visit to the hospital before heading on to church. We can't get enough of him!

Friday, April 9, 2010

Thank you for all the eye-directed praying that you've been doing! Daniel had another eye examination today and to our amazement, his eyes now only show stage 1 retinopathy - so they have really improved since last Friday! Hooray!

Keep the prayers coming - we'd love it if even the stage 1 retinopathy disappeared (although apparently stage 1 is nothing to worry about)...

Daniel is doing SO well - they are planning to move him down to the step down nursery (or the 'grow room') tomorrow. This means that they are no longer concerned about him medically, he just has to gain weight and grow before they will let him come HOME!!! It is likely to be a while yet, but what a relief and joy it is to be that one step closer to having our baby home!

Wednesday, April 7, 2010


Our boy is off the CPAP and is now just getting his oxygen through nasal cannula, which is FAR more comfortable for him! AND he has his feeding tube in his nose rather than his mouth, which is also less irritating for him!
This means we can now see his beautiful face (without the mask squishing it out of all proportion!) AND that he can start to try breast feeding! We have had 3 goes so far - and the signs are encouraging - he is keen to latch on and start sucking (although suck + swallow co-ordination is not really there yet, so I have to pull away to make sure he doesn't choke!)
AND he seems to really like it! This morning he was gazing up at me and even attempted smiling a few times! Oh he is WONDERFUL! I am in love! (it helps that he looks JUST like his Daddy!)

I was also given a tour of the step-down nursery this morning, with a view to Daniel moving down there as soon as a bed space becomes available (hopefully later this week). Eeek! It all seems to be going SO well! The nurses keep saying how intelligent he is - apparently they have nick-named him 'Houdini' because no matter how they attach the various wires and tubes, he still manages to pull them off/out - seeming to have real control and purpose over his movements, which is surprisingly advanced for his gestational age!

Sunday, April 4, 2010

Hope – A testimony for Easter

Ed and I were asked to share our 'faith story' about what we've been through in this last year at the Easter services today... thought you might like to see what we said!

Hi. I’m Ed and this is my wife Nicci. We moved to the Bay Area just over a year ago when I was transferred over here to my company’s head office in Redwood Shores. When we arrived, top of our list of things to get sorted (and the very thing we’d asked all our friends and family back home to be praying for) was for us to find a church. The first one we tried was CPC and we haven’t looked back!

We had great hopes for this new adventure in our lives, but had little idea what sort of an adventure the Lord had planned for us and what trials he would lead us through.

But before we give you the details about what we’ve been through, let me give you a bit of background about us! As you can tell from our accents, we are not from around here. We are English and, up until a year ago we didn’t know anyone in the States. We were both raised in very loving, Christian families. Both of us were encouraged and nurtured in secure and privileged homes. We both made a commitment to follow Christ when we were very young, and in His grace, we never strayed far from Him, even through our teenage years. We met at University and married when we were 21 (11 ½ years ago!).

Up until 6 years ago, life had been going just as we’d hoped it would. We were both doing well in our careers. We had lots of friends, a really happy marriage, reasonable financial security, a great family, and a great church.

We were comfortable and happy in this World. Our experience was that God answered prayer and that usually, He blessed us with exactly what we asked for.

But, 6 years ago, we started trying for a family. A year went by, then two, three, four years. After 5 long years we had pretty much given up on the idea of having children. By this time, most of our friends who had got married around the same time as us or even after us were having their second child. Although heart breaking, we knew that we had grown a lot through the chronic pain of infertility and we were confident in God’s good and sovereign plan for our lives...even if that meant that we were never going to be parents.

When we moved out here, with me not working, it seemed like the perfect time to try IVF. And, to our utter amazement and joy, I fell pregnant on our first attempt! And incredibly, I was pregnant with TWINS! It all seemed too good to be true. Everything went well at first but then, in week 9 of the pregnancy, I began to bleed. Although we didn’t lose the babies, this bleeding caused one of the sacks that one of the babies was in to burst. We were told we were going to lose at least one of the babies and I was put on strict bed rest, which lasted 4½ months.

On the day we found out the sack had burst, we phoned my parents. Once we’d told them our sad news, they had some news of their own. My Mum, the most colourful, vibrant and faith-filled woman told us that she had been diagnosed with terminal lung cancer and only had a few more months to live.

It felt as though our prayers were bouncing off the ceiling. It felt as though we had been abandoned and that God, just as He had done with Job, was allowing the evil one to do his worst with us.

It was hard to believe the scriptures like Romans 8:28, that God works for the GOOD of those who love Him, or Matthew 7:9-10, where it says that God will not give us a stone if we ask for bread or a snake when we ask Him for fish. It felt like we were being given stones and snakes. But, in the midst of that dark time, God held onto us and gave us the faith to decide to believe His word above our experience. If God says he will only do us good and that he will only give us good things, then, even though my experience is shouting the opposite, I will choose to believe that what I am going through IS good. God’s word trumps my experience.

In the weeks that followed, we prayed and prayed. I flew out to England on December 16th to spend Christmas with my Mum, Dad and sister. I arrived home in time for lunch and we had a happy afternoon together, but at 6pm that day my Mum died aged just 57: only 4 weeks from the day she was diagnosed.

And on 8th February, I gave birth in my 25th week of pregnancy. Our firstborn son, Joshua, who had hung onto life for much longer than anyone had predicted after his amniotic sack had burst, died after just 67 minutes. And Daniel, the other twin is still in the neonatal intensive care unit at Stanford.

Looking back, if we’d known what this last year was going to entail we wouldn’t have thought we’d be able to endure it with our faith intact. But God has held us and given us the strength we have needed each day.

Amazingly, we can see that God (as he promises He will!) has used this period of intense suffering to refine our faith and achieve in us the growth that we had prayed for in the past, but could not generate on our own...

One major thing that I am learning is that God wants me to be a woman of faith, not fear. I have been holding onto Romans 8:15 “For you did not receive a spirit that makes you a slave again to fear, but you received a spirit of sonship. And by Him we cry “Abba, Father””.

Through the pregnancy and now, with Daniel in intensive care, there is SO much I could be fearful about. I find it is a daily battle to choose to cry out to my Heavenly Father, my ever-loving ‘Abba’. To lay all my fears before Him and then LEAVE them in His hands, trusting that He is sovereignly in control and that He will work His good purposes out.

I have been challenged to let go of what I think is best and to trust and embrace God’s best for me and for my family, even if that turns out to be the exact opposite of what I thought would be best!

The main thing for me is that my appetite for heaven has increased! Just 10 days after Mum had died I was reading the Psalms and found the verse that says: Better is one day in your courts than a thousand elsewhere. I did the maths: I had hoped that Mum would live another 30 years or so, and get to be a wonderful grandmother to our kids. But with one day in Heaven equalling roughly 3 years on Earth, I realised that after just 10 days with the Lord, Mum had already experienced more joy than she would have had with another 30 years on Earth. Heaven must be great! Jesus will be there, and so will my Mum and my firstborn son. I can’t wait to go there!

Whereas before I was satisfied with this life, I now see that this world is broken and that nothing in this life lasts, or will never truly satisfy. Everything this side of heaven is fragile and temporary. I can’t wait for heaven where moth, rust and death will not be able to destroy as they do here.

The theme of this service is ‘hope’. Throughout the last few months we ‘hoped’ the bleeding would stop, hoped that neither sack would burst, hoped I’d be able to carry the babies through to full term and hoped that Joshua and Ed’s Mum would not die... none of these ‘hopes’ were fulfilled.

As I said before, the things we ‘hope’ for in this life are fragile and temporary. The likelihood is that at some point, these hopes will disappoint us. The ONLY hope that won’t disappoint is the hope that is grounded in the fact of Jesus death and resurrection. Because Jesus died in our place, we can be sure that we no longer have to face God’s anger for our sin. Because Jesus rose again, we can be utterly confident that we will also be raised with him.

1 Peter 1 v3 says “Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead

A LIVING hope. That’s what’s on offer! A hope that CANNOT disappoint us!

It’s this hope that has anchored us through this season of trial. It is this hope that means we can stand here today, after all we have been through and state that God is good, He is wise and He is sovereignly in control.

He does ALL things well and even if we don’t understand the reasons for all that He has ordained for us, we will trust Him and trust that one day we WILL understand. God sets the standard for what is good, wise and loving. It’s not that he has failed to be any of these things or in any way ‘dropped the ball’ in the last few months. No, in all that we have been through, God has been working out His perfect, loving and altogether wise plan.

I’d like to finish with my Mum’s favourite poem that she knew off-by-heart and often quoted in her last days. It is so wise, and has helped us immensely to fix our eyes not on what is seen, but on the unseen reality of God’s perfect sovereign plan for our lives.

My life is but a weaving between my Lord and me;
I cannot choose the colours He worketh steadily.
Oft times He weaveth sorrow and I, in foolish pride,
forget He sees the upper, and I the underside.

Not 'til the loom is silent and the shuttles cease to fly,
shall God unroll the canvas and explain the reason why
the dark threads are as needful in the Weaver's skillful hand,
as the threads of gold and silver in the pattern He has planned.

He knows, He loves, He cares: nothing this truth can dim.
He gives His very best to those who choose to walk with Him
OK, So we know that many of you have had 'chubby cheeks' as an item on the list of things you're praying for Daniel... we just wanted to encourage you all with this photo we took while he was having a cuddle with Ed today!
Talk about an answer to prayer! I guess we now have to pray that he grows into his cheeks!

Saturday, April 3, 2010

Good news! We spoke to our good friend Justin at 20’s last night who told us he has separated his shoulders THREE times – and 2 of the times were as bad as Ed’s – and he NEVER had the operation. He said that after a few months he had regained complete movement without pain – all he has to show for it are bumps on the top of his shoulder blades… it might be that the consultant here was wanting to do surgery because he gets more money if he operates – so we’re going for a second opinion… but it may not be as bad as we thought AND Ed managed to hold Daniel this morning without it causing him too much pain - although the arm of the chair took the weight! Weight is the operative word: Daniel is now 1,520g.

Since we know that the man you're most interested in hearing about is Daniel... let's give you a quick update. During rounds on Wednesday morning the Consultant said "Daniel is one of our little heroes right now". He is doing really well: still on CPAP for his oxygen, but coming down on his settings every day. Hopefully he will move on to nasal cannula some time next week. He is growing and all four of his cheeks (!) are getting chubby. The only slight concern is that he had an eye examination yesterday which showed that he has 'Stage 2 Retinopathy' in his right eye. Apparently stages 1 and 2 are within normal limits, and almost all premature babies have this, but they have given him a blood transfusion and are keeping him under bright lights to try to stop the progression. If it progresses to stage 3 then he may need laser treatment, so for you pray-ers out there, this is an item to add to the list!

Thursday, April 1, 2010

Following our visit to the consultant yesterday, I am feeling pretty bad about the light-hearted tone of my last post...

Ed has bust up his shoulder pretty badly... he's severed both of the ligaments that hold the shoulder together so the joint can't stay in place. Basically, until he has surgery, he's going to be in a lot of pain whenever he tries to lift anything or use his shoulder in any way.

Thankfully, one of the senior guys at Ed's work is well connected and has put us in touch with a surgeon who specialises in sports injuries (apparently he gets flown round the world to operate on top athletes). Ed will find out today about how quickly he can be seen.

The really upsetting part about this injury is that Ed is unable to hold Daniel for the time being. And, just as we prepare to bring a newborn home, my man is unable to lift anything!

Ed is being amazingly stoical and strong while I oscillate between feeling sad and angry. I am preaching to myself and seeking to hold on in faith that all this is for our good - but this is just another thing, on top of everything else. We just feel that we need a bit of let up, but I am confident the lord knows what He's doing and why...