I am trying to be like Jesus
I am following in his ways
I am trying to love as he did
In all that I do and say...
Just tonight I sang this Janice Kapp Perry song to Jonah as I held him. It has become a favorite of mine and Jonah is really comforted by the children's gospel songs that I sing to him. I must admit that tonight I needed to hear the comforting words of gospel songs that remind me of God's love and plan for these sweet boys.
This past week has been difficult as Jonah continues to have issues with his shunt. He underwent surgery over a week ago to revise the shunt because it had stopped functioning. It still is not draining as it should be and for the past five days neurosurgery has tapped the reservoir of his shunt and removed about half an ounce of spinal fluid each day to relieve the extra pressure. Shane and I are frustrated as we continue to ask what the plans are long term and why the shunt doesn't seem to be regulating things as it should be. It seems that the NICU team here isn't sure but the neurosurgeon is convinced that the shunt is working and that by tapping for now we can possibly still help it function without another surgery. As parents we are frustrated that Jonah is not making progress but we have to trust the doctors and pray that they will be inspired to intervene soon should things continue as they are.
I was feeling frustrated tonight and scared. It is overwhelming sometimes to realize that Jonah will always be faced with these challenging health situations and that he may not run and play like other little boys. Sometimes it is so hard to remember that life goes on, even with all that we face. The hardest part is to not sometimes envy the regular lives of others. I miss the days that I woke up, went to work and came home to dinner and rest. What where those days like?
So as you can see we have not yet been transferred from Los Angeles. The surgeon following Noah had us convinced he would have laser for his eyes yesterday and then when he showed up to examine Noah he felt like he didn't want to do the surgery just yet. So this upcoming Monday Dr. Lee will take a look again to see if he still feels like Noah qualifies for the laser procedure to correct his ROP.
There are still good things, small steps of progress, for example Noah is finally being weaned on his ventilator and they are talking about taking him off early next week to see if he can fair well on high flow oxygen (the same system that Jonah is on). This is a huge step as being off the ventilator is a huge milestone for a preemie. It is also one step closer to home.
Noah weighs 5 pounds 7 ounces and Jonah weighs 4 pounds 9 ounces. They haven't gained much more as both have been up and down with their feeds. Jonah earlier this week vomited old blood with one of his feeds so they had to stop his feeding and start him on medication to line his stomach to heal any stomach irritations or sores that may have developed so they could attempt feeding again. Noah isn't tolerating being at "full feeds" (a little over an ounce every three hours) if they are given all at one time so they started him on "continuous" feeds which is where they give him 15 cc's every hour, 24 hours a day so it is constant. He seems to be tolerating the smaller volume and is doing better now.
We will be in Los Angeles for at least another week and then I do believe the next step would be Fresno.
For now we ask that you continue to pray for our boys. This journey is so long and challenging, we need every bit of strength and support that God can provide. Pray for our continued abilities to manage this path and for the progress of our precious boys so that they may come home to us soon.
Love, Shane and Michelle Hanna