“Out of difficulties grow miracles.” Jean de la Bruyere
The past week almost seems like a blur as both boys are now at Children’s Hospital of Los Angeles. Early last week the decision was made that both boys required laser eye surgery for a condition called Retinopathy of prematurity (ROP). ROP is a disease of the eye that affects prematurely born babies. It is caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment which in serious cases can cause blindness. Unfortunately there are but a handful of laser eye surgeons who work in pediatrics in all of Central Valley and they all are located in Los Angeles. Within the matter of 48 hours the arrangements were made to transfer both boys to Los Angeles and to their third hospital since birth. I was heart broken to leave Fresno and all of the relationships I had made with nurses, etc. but obviously the very best is what was needed for my sons to heal and head home.
It has been an adjustment, staying here in Los Angeles. The hospital has some of the best pediatric surgeons in all of Central Valley but its facilities are older and it is located in a more run down area of Los Angeles. I certainly felt spoiled in Fresno being in such a nice, new hospital and near so many nice communities in Fresno. I know it sounds trite but you form attachments in situations like this and I took great comfort in where we were located.
After the boys arrived, Jonah had his laser procedure immediately. After the first exam the ophthalmologist didn’t think Jonah’s eyes were as severe as the referring ophthalmologist from Fresno had thought but after the laser procedure Thursday night the doctor reported that the condition was more severe then he had anticipated. He now hopes that the procedure from last week will be sufficient and that Jonah will not require actual eye surgery to correct the ROP. It will take two weeks before we know if the laser procedure was able to fully correct the aggressive stages of ROP in Jonah’s eyes. The doctor didn’t feel Noah required immediate surgery but wanted to continue to monitor his eyes. This past Friday he thought Noah would require surgery today but as of this morning we had yet another small miracle. After examining Noah, the doctor was surprised to find that his eyes had actually improved over the weekend. Ever since the boys arrived here the doctors have been trying to lower his chronic CO2 levels, as the laser surgeon believed that this was a definite contributor to his eye condition. It was unfortunate that this past Friday night they had to put Noah back on the high frequency oscillator but with the high frequency ventilator and additional medications to lower his CO2 it looks like the results have definitely helped his eyes.
As of today Noah will not require laser eye surgery. He will continue to be monitored over the next several weeks. I began telling myself last Thursday that this experience would only be a couple of weeks and that I could make it through but unfortunately I found out Friday that the doctor here plans to keep both boys here in Los Angeles for the next 6 weeks. Hopefully at that time they will be ready to go home, if not they will head back to a less intensive NICU in Bakersfield.
Jonah has grown so much and continues to show us his little personality. He loves to be held and coos at us while he hold him in our arms. He is feisty and knows what he wants and he lets us know! He is already competing for all of Mom and Dad’s attention. Jonah now just needs to catch up to Noah in weight! Noah is adorable and all the nurses love his adorable cheeks and baby rolls. We keep praying for him that he will overcome his challenges with his lungs.
This experience has felt so long, sometimes I cannot believe it has been nearly three months it feels like an eternity at times. We are so glad the boys are where they are today but it still feels like such a long road home. We keep praying for their progress every day. We still have much to overcome with learning how to feed, etc. Sometimes when Jonah falls asleep he will have apnea spells which scare me to death, I know that both boys will probably go home on oxygen as well as several other medications. Sometimes it scares me all that they still must overcome but I know that we will find the strength to help them through this time of prematurity. The hospital here is talking about sending Jonah home with his ostomy. They are not pushed to repair his ostomy at any time and are willing to send him home to grow and gain even more weight before going in to repair his intestines.
At least both boys will be at home though and we will be in our house. It will be a nice feeling to be at home.
Merry Christmas to each of you, thank you for your support and love. Sometimes it surprises me that God really trusted us so much with these boys and sometimes I don’t feel capable for the responsibility. I know that God strengthens us all in our times of need and even if the strength is not there, as I have said before, the capacity most always is and he provides the rest.
We send wishes for a happier, healthier, blessed 2008. We will continue to send you progress of our two boys.
Love, Shane and Michelle