Tuesday, May 29, 2007

Eyes wide open

Reuben will be 4 weeks old tomorrow and I can barely describe the last 4 weeks. He is still in intensive care, the NICU at Children's Hospital LA after a transfer from St John's Santa Monica where he was born. I say to the Drs, but he's stable right, ignoring the Memorial plaques on the wall leading to the NICU and the Drs reply 'he's critically ill'.

My pregnancy was the sickest and yet happiest 9 months of my life. It was bliss.

Within an hour of Reuben's birth which was such a jubilant experience - I was singing Dancing Queen, Boys of Summer, Born in the USA and Ruby Ruby Ruby Ruby, I have to hold onto those moments of bliss now because life has been crippling since. I feel like a great tidal wave keeps knocking me down, yet I have to get back up and face the next one, every day, several times a day as the details of Reuben's medical issues are drip fed - as I was recovering from the c-section, we were told by the paediatrician that Reuben had the following medical conditions:
- heart murmour and a large hole in his heart (pulminary stenosis, ventricular heart defect)
- undescended testes
- slight facial paralysis on the right side, the 7th nerve

We were asked if any of this came up on the amnio. We said we didn't have the amnio because of the risks. Guilt although we wouldn't have intervened, it would have helped us deal with the shock.

The next few days, Jason was full of tears and I for once was strong for him. We thought ahead of the heart operation. On day 7, the worst day of our lives, Reuben was diagnosed with Charge Syndrome, one of the most complex medical conditions known. The shock 4 weeks on has turned to acceptance.

If you look up Charge, you'll be shocked at the complexity. It was presented to us as a 'change in strategy'. We were called in and shown a book with medical conditions on one side and photos of children with severe facial paralysis and medical problems. I thought, Why are you showing us these pictures? What's it got to do with us? And when we realised, I just collapsed.

On day 8, we were told Reuben is completely deaf and is missing the nerves to hear. Anyone who knows me well here will understand what blow that is. Music is the most important force in our lives. Reuben slept through all those very many gigs because he could not hear. How can life been that painful?

I am now learning sign language. We begged God for his mental faculties. His brain scan looks normal although without all his faculties, his learning curve will be a steep climb for him. We begged God for his eyesight and that has been spared albeit impaired. We begged God for him to be able to walk and on that we'll have to wait and see after years of physical therapy. I pleaded with God to spare him his life and that I love my boy so much. Please don't take him away from us. I spoke to my family and best friend to say that I wouldn't want to live if Reuben was taken away from us. Everyone here knows the journey we've all shared.

We had him emergency baptised that day.

I can't break down each day besides being a passionate writer. It's all been too painful. The night before he was born, I finished my 90 page book 'Letters to Reuben; a journey through pregnancy after infertility issues' and bound it for him in blue ribbons.

I have felt a terrible sense of grief at times which feels so wrong now, grief for a lost future. That the trips planned wouldn't happen, that my life would be one of a mother of a child with special needs. I wouldn't be able to work again. His mental abilities would be solely dependent on my abilities to allow him to overcome his sensory loss and severe medical issues.

I love my boy beyond description. He gives us so much strength. I have been very angry, about the injustice it feels, about us both feeling 'cheated' after our long 6 year journey. I felt robbed of having a brief 1hr to enjoy him after birth and the rest of the time since has been a spiral of bleak thoughts.

Yet these were selfish thoughts. This is about Boo and his journey.

My best friend Erica in the UK got in touch with the Charge Foundation, and through a serious of investigative work (she calls me every day here in LA before we leave for the hospital 26 miles away... she is my sunshine), put us in touch with a Charge family here in LA and we met a boy called Keith and his mother Yuka. Keith has a traceotomy (breathing tube), a feeding tube in his stomach (Gtube) and is deaf, and yet he is 18 and is at university studying biology. It took me so long to realise he was deaf, such was his proficiency of speech and lip reading.

Please pray for Reuben. His Gtube and fondiplication (Google them) open surgeries are on Thursday which will allow him to be fed through his stomach. He keeps aspirating which can cause pneumonia when fed through his nasal tube due to reflux so the operation is essential. We pray he won't need a breathing tube (traceotomy) and pray one day he'll be able to orally feed. Until 2 weeks ago, he was breathing by himself, albeit with temporary aspirations and C02 highs, but breathing he was. Now he's on a breathing tube, but with a low dosage of oxygen. Huge setbacks each week, like snakes and ladders. We pray too that he'll come off oxygen and we'll be able to bring him home in a month.

I wheel his M&P pram around my bedroom and hold onto it for strength when I feel paralysed myself to deal with things. Such a simple pleasure, wheeling my boy in a pram, that I can't now enjoy. That will be the happiest day of my life when I can.

I can't describe the pain of thinking of what he's going to go through.

Jason's parents were here for 2 weeks, and my mum is now here for 7 weeks. She feeds me. I guess it's an easy way to lose pregnancy weight, it's all gone. My breastmilk despite rigorous pumping is 5ml and he takes 55ml into his tube every 3 weeks. But I won't give up. It's my little contribution whilst he's in the NICU. Yet it's another hurdle against us.

I can't describe either the pain of separation, having to ask to take him out of his crib in the hospital, short visits before we have to leave him in the evening and drive up the 26m to get up the next day and do the same again.

I feel more than ever that Reuben needs siblings to help him develop and to give him unconditional love. That's another challenge which I'd like to try for this year.
Our 5 frosties will now need to be genetically tested, as will any future ICSI embies. Am I to blame for such drastic medical intervention, blasto, ICSI, abdominal myomectomy, 6yrs...?

No other medical insurer would touch us now as the condition is pre-existing. He's a joint UK/US citizen now, but if we return to the UK, I wonder what care he'd get on the NHS. So many life questions and yet all I need to focus on now, is God giving him life.

I don't understand why this is my calling and I don't understand why Reuben will have to go through this.


UndercoverPete said...

Hi Catherine
Great to see Reuben's blog, fantastic way of providing the information for everyone to read and comment on and due to the google factor you may receive comments from people who are trying to find the answers to similar situations within their own families.
Reuben looks great, looks healthy and looks strong, each photo we've seen doesn't portray his condition, on the contrary he suggests a very alert and robust baby rewarding you with love and faith.
When we were informed via the net of his condition it read like an encyclopedia of medical terms and it became a hard read where Nicki and I had to choke back the tears. With a heavy inbalance of negatives its lovely to find your moments of happiness and love with Reuben. It reminds me of things we tend to forget and often hide, those tiny little special moments with our new born that mean so much, that fire our hearts, that humble our manners, but when described seem to the listener almost trivial.
Why? Unfortunately our simple reasoning can never be answered, our regrets and guilt can never be tempered, a thousand questions and so few answers. But we can't let that haunt us. God has delivered a beautiful baby, he has delivered a son to a couple who are full of love, commitment and passion. He has provided yourselves with the tools to take on this challenge, there's no finish line, there's no medal at the end. Your journey will see obstacles and times where light seems never to shine, but it will also be filled with those magical moments, that sense of family, and of achievement.
The letter from Yuka was lovely and I think the quote from Martin Luther King is one worth repeating "You don't have to see the whole staircase to take the first step."
Take care Catherine, Jason and Reuben, our thoughts and prayers are with you.

Love Pete, Nicki, Corrin & Hannah

Eva Nichole said...

Hello, my name is Crystal and I was googleing CHARGE Syndrome which is something I do once in awhile because my daughter Eva has CHARGE. Your son is so adorable and I want you to know you are not alone and if you have not already found it there is a support group on line at yahoo, its an awsome group of people, even adults with CHARGE which makes you feel so good about your child's future.
I have a site for Eva and there is also tons of links on it of other CHARGErs and other things you might need.
I will be keeping Reuben in my thoughts and prayers and if its ok adding him to my list of children to check in on once in awhile.
God Bless you,

ellen charge said...

got u to 4999soemthing now wow you can tell im a big fan rite