Michelle does not have access to the blog anymore. I will be posting her update emails.
Friends and family,
I just spent 20 minutes writing this lovely email to all of you and then yahoo closed on me. So here we go again.
This is the first time I have been near a computer since last Thursday. I am unable to update my blog as the hospital library’s internet access blocks the Web site. I will probably have to work out sending emails to Shane who can upload them when time permits. Jonah was transferred Thursday afternoon to the Children’s Hospital of Central California in Madera (right next to Fresno). It is an incredibly hospital, completely dedicated to the care of children and children are flown in from all over the country to be treated for various ailments. Their NICU is an entire floor of the hospital and they have surgeons available for all the issues that come with premature children.
Thursday morning they found what appeared to be a perforation in Jonah’s intestines and this can be fatal with small babies so they knew they were going to have to transfer him. The miracle that happened Thursday was hours before Jonah was breathing so well (even on his own at one point!) that they were able to switch him to a conventional ventilator which made his transfer possible.
We went home and frantically packed to make it down before he got out of surgery. They performed an ostomy and will later go in for another surgery to actually fix the tear, for now he is too little and too unstable. He handled the surgery well and even did really good with the transfer, which I was worried about as he is so sensitive with noise, light, etc.
The past couple of days his oxygen and blood pressure has been fluctuating but much of this is due to his PDA valve that is still open in his heart. They wanted to do this surgery later this week but the nurse was saying today that he has been unstable the past few days and if they can, they will put off the surgery for awhile longer to let him stabilize and recover more.
His head circumference was staying at 26.5 the past few days and suddenly today it jumped ½ a centimeter, which was quite a change. The nurse said she measured him three times and when she told the neurosurgeon they said if it jumped again tomorrow they would do a “tap” to relieve some of the pressure from his head. The neurosurgeon spoke with us Saturday and said that because of his size they will not do anything permanent like a “shunt” until he is 3 or 4 pounds. They have smaller steps to take first to see if they can relieve some of the bleeding/pressure.
All in all, our little Jonah is a fighter. He has fought hard to get to this point and has had his small miracles too. We are so proud of him for fighting and we also know that God would not have prepared his lungs hours before his transfer if he did not have a special mission in mind for this little boy.
We did have the “comfort care” talk once again from the doctors. “Your son has to go through several surgeries, he will be severely disabled, are you sure you want to put him through this?” It is not our position to make the choice of life and death, we both feel strongly that our son deserves every chance at life and that God has put in his path small miracles to help him come along this far. We just have to have the faith to trust him that even if Jonah is severely disabled he will provide us with the ability and courage to provide for him and love him unconditionally.
I have often thought that at least I was able to work with children with Cerebral Palsy and other disabilities as my father was a special education teacher for years. I have been around these children and they are so loving and yes, they have as much to give in this life as those of us who have no disabilities. It is hard to here though, extremely difficult, when the doctors remind you constantly that your child will be severely disabled or disabled in some way. I know that we have the ability to love Jonah no matter his challenges but it is heart breaking to hear such a thing when you tried so hard in the first place to even conceive. It comes with a range of emotions, guilt, fear, anger, frustration and also an ability to hope.
Noah is doing fairly well, he still has his challenges with his lungs but he is fighting. This morning they also switched him to a regular ventilator but he was not liking the transition so they were waiting out the day to see if it would be a permanent move. Otherwise he is doing well. He is up to two feedings of breast milk a day, 1 cc via his IV. He had his first bath yesterday, which saddened me that I was missing all these small steps he is taking. I know that I am where I am needed but it doesn’t ease the heartache much to be split up from both my sons.
I wish I could say this was temporary with Jonah but he will be here the duration of his hospital stay. Right now we have family to help over the next few weeks and we got a room at the Ronald McDonald house which is a great help as they charge a mere $15 a day to stay but in the long term I am yet able to know what is best to do. Do I split the weeks? Weekdays in Bakersfield, weekends in Fresno? It very well may come down to this but for now I will be here in Fresno for the next month or so. Shane has been with me the past few days but must return to Bakersfield either tonight or tomorrow and then my dad arrives on Wednesday to stay with me over the next several weeks. Shane will come down on the weekends and Grandma Hanna is staying at our house in Bakersfield to watch over Noah.
Thank you for your concern and prayers. Please keep praying, I know it is your prayer and faith that has helped our babies make it this far so do not forget us yet. We need your hope and courage.
Love, Shane and Michelle