Monday, June 15, 2009

Getting into a routine

Monday night, I'm home with the girls and Francis is staying the night with his boy. We had a lovely afternoon with Jasmine & Candace yesterday and it really hit me how much this past 9 days has affected them - they were both teary and tired (but that was also due to non-stop action at camp) and unsettled by the change in their routines and not having me around. They are used to Francis being away for up to 3 weeks at a time for work, but I've been the constant home-front - and clearly the last 9 days was tough on them without me. So we decided as Samuel was more stable that I'd come home and do the dinner/bed routine and stay the night, so they would wake with me and I'd do the breakfast/school routine. And it really paid off. Both seemed back to their 'normal' selves and much less anxious. So after they were dropped at school I drove in to see Francis & Samuel.

I was with Samuel from 10 - 3, when it seemed a constant flow of things to do - expressing milk, his care (washing him), helping weigh him, 3 different medical teams through (normal consultant round, surgical team and radiographer), watched his ultrasound of his kidneys & bladder (radiographer and machine came up to him!), 'helping' put him back on CPAP (pressurized oxygen flow that supports his lungs) - by 'help' I hold his flailing arms so the nurse can do her thing. So the day whizzed by and was punctuated in the middle with a 45 minute hold! He was settled this time and was just great to hold him again.

As the Drs don't think he'll ever be able to digest/grow with food, I haven't been able to feed him or even use my milk, but I've needed to express / wean myself for comfort sake. This was a hard process for me and feels/felt like grieving, as a mother naturally wants to nurture her baby.... but the milk is being frozen and kept as we hold on to the hope that maybe things may turn out differently.

I find it daunting interacting with all the different Drs/specialists and don't always understand what they are telling me. The NICU consultant neonatologist is our main point of reference, but at any point in the day other Drs of various specialities wander in unannounced - this is due to it being an acute hospital, so they come when they can fit it in and not at a certain time. So you can sit there for 3 hours and see no-one, or you literally (like today) have one after the other and get a bit bamboozled.

BUT, I think today was another good day. His creatinine levels (kidney function) was right down to 66 (40 - 60 being normal!). This is really good and could be due to the fact that they put in a bigger catheter a couple of days ago so his urine is draining faster, releasing pressure. The ultrasound showed that his bladder is becoming smaller too (good news), but again due to same reason as above.

Over night he twice passed a stool rectally (yeah sorry, but remember this is as much for us as you guys reading it!!!) and again once today. No-one got too excited about that, but they were a little surprised as it may mean he has some peristaltic i.e. intestinal muscular action (I'm too tired to check the spelling of that one) activity.... but it may just 'have been a mechanical function' (quote by surgeon) due to wriggling/change in oxygen levels etc...

Today he also had a colostomy bag put on his stoma to retain all the fluids/bile/meconium remnants that are coming out of his bowel. It covers half his stomach area - the girls weren't too impressed and I felt really sad seeing our handsome little guy with this ugly bag on him, but I know it is practical and put on for a function - that's what I tell myself when I want to cry. Sam was having to work really hard with his breathing (see video clip above) and they decided to put him back on CPAP,which means he is getting constant oxygen/air help. This was disappointing but the x-ray yesterday wasn't completely clear and they felt giving him a bit of extra help for a bit longer would be beneficial for his lungs and help them develop more and stop him getting worn out - he was really gasping/working hard and unsettling to see.

Francis brought the girls and Mum up to see him after school, then I brought them home and did the reading/dinner/bed time routine and it seems to be working well. Mum's heading home tomorrow and will be another change for the girls - they've really gotten to know her and enjoyed having her around. As long as one of us is with Samuel we are relaxed and it is definitely good for the girls to have one of us with them.

Although he seems generally better and more stable than expected, it hit me today how debilitating his condition is and how we are at the start of a long road. I felt overwhelmed and out of my depth dealing with so many Drs and teary and helpless to help our little boy. He cries a lot but I can't pick him up to do the normal 'burp/cuddle' thing - he just lies there crying and I stroke his head/arm and talk to him, but oh how I wish I could pick him up. I found it a hard day - I'm impatient for change and better results.... but his condition is so multi-faceted that the complexities of one improvement are quickly overshadowed by another part of his condition.

Today I read in the bible from Job 42. Verse 5 leapt off the page at me: 'My ears had heard of you but now my eyes have seen you.' I'm not a bible scholar and it may be a wrong application, but for me it felt so real that over my life I have heard so much about God and his faithfulness, but these past few months and particularly since Samuel was born, I have now seen God - seen him in the love and care from so many, seen the reality of his peace in our lives and experienced God on a different and deeper level. I am so glad for His help and presence. It makes each day do-able and takes away fear - just His peace amongst the unknown.

I will finish with a quote from Jasmine last night. She was saying how much she had missed me and was sobbing uncontrollably. She said (through tears flowing), 'It just hurts so much Mummy, I feel like my heart is breaking... I actually think I heard it crack!'. It took everything in my being to not laugh at her comment, yet I felt desperately sad for her as we have largely been consumed by Samuel and maybe not realised the impact on them.

So each day ebbs and flows between joy & smiles, tears & sadness. I wasn't intending my blog to being all melancholy and philosophical...... hmmmm.

Goodnight. Love Shirley


Anonymous said...

Shirley, Francis, Jasmine and Candice and now dear Samuel, it is hard to read your blogs without crying - so tend to wait until I am home to have a read. We are sorry that we are not nearby so we could take the girls out or bring them home to play with Rose and Reuben - I know it is no substitute for the real thing, but I wish we could be there for you guys. I think I heard Jasmine's heart 'crack' from here.

I have always been amazed by that verse in Job - how he was able, after all he had been through, to say that his eyes had seen the Lord - and yet you find it to be true. I find your faith and trust to be a wonderful testimony, a witness and an inspiration. We continue to pray for you all and follow the progress of Samuel and the girls I am glad they are feeling more settled. Please pass on our love to candice and Jasmine.lots of love M&E, R,R & W

Anonymous said...

So thankful for all the bits of good development. Be sure this little guy has his own fan club in Salavan.


Anonymous said...

Good that you can write your true feelings. You don't always have to be "brave" Lovely you had a couple of nights at home with the girls. I'm sure it must be a bit overwhelming at times.
Love Raewyn and Andy
Love to Anne and Rod as well xx

Wayne Mortensen said...

Hey guys ... man you are so in our thoughts and prayers .. getting it out there. Love ya!

Nige said...

Praying 4 you guys and Samuel.

Nigel (ex-y-one87)

Anonymous said...

Hi Shirley and Francis, Candace, Jasmine and wee Samuel. I just found this blog (well Lynley found it and sent me the link) You are in my thoughts and prayers as you all face this roller coaster ride.. day by day!!! I will follow your blog and continue to pray

Sandra Patton (and Steve too!!)

Susanna said...

Thanks for yesterday's blog Shirl. You are such a lovely mummy-what an amazing job you are doingxx

Anonymous said...

Hi Shirley, Francis, Jasmine and Candice...Have been reading your web blog that Marion put me onto (we live up the road from her)..I think it's a great idea for yourselves as well as for others to write this blog and it'll be your recall along the way. Be assured of our thoughts, prayers and love to you all...God has chosen you to walk through this path for His purposes and we pray that you'll be carried through it by Him. There are many watching you and they will see your quiet, human responses and this will open doors that you won't know about at the moment. You are doing well and having just walked through a similar situation (not medically but with huge demands from family) of a friend with a 5 and lives away from a city...juggling all is an act...praise God you have family handy to help. We'll be following with you and uplifting you as able...may God be close to you all through this time...
with greetings from the deep south,
Coralie McLay (Gordon, Susan, Reuben, Isabel, Esther, Naomi & Josiah)

Mike & Hilary said...

Hi Shirely, beautiful blog, not melancholy at all, totally real and heart felt. You look absolutely radiant despite all you are dealing with, the beauty of your faith for sure. Pleased you are finding your stride and some normality. Heaps of hugs to you all.... Tomkins Whanau

Murray and Alison Ure said...

Hi Shirley and Francis you are much in our thoughts and prayers as you care for your little Samuel. Your blog is so good we feel like we have shared something of your journey. We trust you will continue to draw daily strength and grace to cope from our loving Father.Ps 91
Love and prayers
Alison and Murray Ure

Eckrote Express said...

Thanks for letting us "eavesdrop" on your journal. I'm so glad you're able to be "real" with the ups & downs and not feel like you need to stay positive all the time. Oh how my heart aches to be there with you...the blog is a great tool for keeping Samuel and the rest of you in the forefront of my mind. Much love, Amy

The Heslop Family said...

Oh Shirley, what an awesome blog. I cried buckets yesterday, reading over the weekend - but today I just feel so inspired by the way you and Francis are coping. You're amazing, faithful people, and we're praying hard out for all of you, Jasmine and Candace included. I'm amazed at Samuel's progress - what a dude. Just as the doctors say one thing, he goes and does another.

Our hearts go out to you, and our prayers go up for you.

Love, Nigel, Bron, James and Ollie xxoo

Katepai said...

Thinking of you.
love from us,

kate, merlin, brittany, mikayla, lili

x x x

Lisa said...

Hey guys,

I have just read your latest blog and have tears streaming down my face.

My heart breaks for you not being able to hold your precious little boy when he's crying. But I know he must sense you're there and that he's much loved however a baby processes those thoughts. He has beautiful parents!!

You're all very much in our thoughts and prayers as you embark on the journey ahead - one step at a time.

Wish there was something more practical we could do.

Sending you all much love from Oz,
Lis, Matt and Asher xxoo

Leyette Callister said...

Hi Shirley and Frank
I love the videos and updates - a blog makes it so much easier than trying to text that many words! Great to hear about progress. We will just continue to uphold you all and pray for daily breakthroughs. Love Leyette and Paul

thecarlows said...

Hi Guys

Were logging on when we can and keeping an eye on Sameul's progress, great to read your blogg Shirl, love you all.

Steve & Mel xxxx

lizzy said...

Hey Shirley and Francis...
You are in my thoughts constantly. The unknown-ness of it all must be really difficult to deal with. Fortunately, God gives us what we need in terms of strength, courage and that beautiful peace... especially you two who are on the forefront. Just a word of encouragement. God is not at all surprised by this. He never is. I found this great quote in a book I'm reading...
"The central theme of our Christian understanding has always been the sovereignty of God. It is more than Romans 8:28, it is a firm belief that God makes no mistakes, doesn't change His mind, that things don't happen by chance and there is no such thing as luck. Therefore, there can be no such thing as an 'accident'. The Lord never acts capriciously."
Ps 139v16... He knew every moment of Samuel's life before even one of them existed. He uses the weak to confound/shame the strong... God ALWAYS has amazing purposes in our suffering and pain. If you continue to cling to Him, He WILL pull you through and blow your mind with the incredible ways he uses Samuel's story. My heart is SO with you. Praying for deep peace that surpasses and goes deeper than ANY other emotion or feeling. Love you guys... Liz x