Monday, March 24, 2008

"It is important for us to realize that God is a fourth-watch God."
S. Michael Wilcox, When Your Prayers Seem Unanswered

Let me explain the above quote. I finally decided to pick up the book my father gave me a few months ago and read it tonight as I was feeling depressed about the lack of progress made by Noah in the hospital and the overall stress of dealing with Jonah's adjustment to home. My father, wise as fathers can be, gave this book to me and told me I needed to read it.

I have to admit that I haven't been the best at making time for scripture reading throughout this experience and I am sure I would have faired better during some very difficult days if I would have been more diligent. Now it is even harder with only two and a half hours of sleep at a time to find the time to read a few verses but I am trying to resolve myself to change this.

Let me get back to the quote. Basically, one of the points this author makes is that God is a "fourth-watch" God. A New Testament night was divided in to four watches: the first from six in the evening until nine and so on with the final watch being those very last hours of the night before sunrise. The author explains that often times God is a fourth watch God, when in moments of trial we are desperate that he come to us in our hour of need but often he waits until those final moments of darkness before showing us the light.

I am still praying for our fourth watch with our sweet Noah.

They went ahead and started steroids today, Prednisone to be exact, with Noah. We are hoping that a five-day, low dose will strengthen his lungs just enough to get his oxygen requirements down to the point that he can switch over to a low flow system and come home. His doctor really wants Noah at home where he can heal and be in a more stable environment. The sad part is that if the steroids do not work, I know a tracheostomy may become more likely. This just seems so horrific. I cannot imagine our beautiful son with a hole in his throat and hooked up to a home ventilator. The mere idea seems so terrible and so overwhelming.

How we have prayed for Noah. I feel sometimes we have exhausted ourselves in prayer and fasting that he might be spared the more difficult path of home ventilation. But I cannot give up yet. There is still a part of me that knows that surely God does hear us and will not abandon us. Even when I feel that my "fourth-watch" is never coming and I feel that he has left me alone to walk a very long, difficult and dark road there is still a tiny spark of hope in my heart that hopes that God will spare Noah of this challenge.

If not then we will have to adjust our lives and ourselves to doing what his best for him. At least I have the ability to somewhat cope with the idea.

Jonah is doing ok. He is still fussy with his feeds, ever since we switched him over to formula. It is a fight to get two ounces down him every three hours but we are keeping at it. I just can't believe that he was easily eating three ounces or more at the hospital and suddenly at home on formula he is eating less. It is frustrating but we are moving forward and trying our hardest to work with him. I dread to think that he would not improve and they would re-hospitalize him for a ridiculous feeding tube!! I will not give up!

At least right now Jonah allows us to put him in his swing or the bouncy seat instead of always insisting on being held. We are still working on his schedule but hopefully it will come with time.

I am anxious to see if Jonah gains weight this week. We were trying rice cereal but it thickened the formula so much that we couldn't find a proper nipple that helped Jonah. The medium flow didn't allow the formula through and the fast flow practically drowned Jonah. So we are back to 22 calorie Neosure. We may have to up the calories this Friday if he doesn't gain weight and all I can do is hope he doesn't refuse to eat after that change!

So we are waiting for our fourth watch and hoping for the best for these sweet babies. We so want our Noah at home, even with all the medications, nebulizer treatments and oxygen....we want him home! We also accept that may require home ventilation and if it does we will manage the challenge and do our best.

Keep our babies in your prayers. I so wish this journey ended the moment these boys came home but it is only beginning now.

Thank you all for your love and support.

Shane and Michelle

1 comment:

Emily said...

Your feelings hit home so closely I had to comment. My daughter received a trach at 4.5mos of age after 3 rounds of steroids and still requiring high ventilator settings. For her they tried two different steroids (prednisolone and dexamethasone) the dexamethasone always did wonders for her and she was extubated twice onto CPAP but neither time lasted even a month and she always rebounded when the steroids would end, onto higher ventilator settings than she'd needed prior to steroids.

I remember the tears that streamed down my face as the pulmonologist sat with me at 37wks and told me that unlike normal preemies, her lungs were simply continuing to get worse and that he didn't see any way that she could make it without long term ventilation. I clung to the dream that maybe after the tracheostomy she could get by with only CPAP (this would mean no ventilator was necessary) but she contracted MRSA pneumonia as a result of her tracheostomy and after spending 6wks battling for her life, all hope of her only needing CPAP was long gone.

She came home at 8mos with her ventilator (the pulmo tried to make me feel better by explaining that it's the size of a laptop and only weighs 10lbs but the fact is, my daughter couldn't breathe on her own and had a hole in her neck to keep her alive), oxygen, feeding tube, pulse oximeter, suction machine, multiple neb machines and countless boxes of supplies.

I was thrilled to have her home but at the same time I thought I had walked into the biggest nightmare of my life. However, as the days went by I started to realize that as much of a pain as the trach and ventilator were, I had my baby home and no amount of equipment or the number of nurses constantly invading my home, could take that away from me. I could cuddle her, nurse her (very little but I treasure the few months she nursed sparatically every few days), change her diapers, and make medical decisions for her, things I'd never been able to do of my own accord before.

Your feelings about a trach are all totally normal. With preemies I know I always had this picture of her coming home with a cannula and monitor and then us being a happy little family. The ventilator was not part of the picture and it took forever to accept it. My daughter did get rid of her ventilator just before her first birthday and had her trach removed at 13mos which were two of the happiest days of my life.

I will be praying that things improve with your sweet baby and that if a tracheostomy is necessary he doesn't need a ventilator and can get by with oxygen or CPAP. I wish no parent had to go through the experience you're living but know that others have walked the path too.