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