"Hope is always available to us. When we feel defeated, we need only take a deep breath and say, "Yes," and hope will reappear. Monroe Forester
I appreciated this quote today as I've had to take quite a few "breaths" to remind myself to not give up hope and that Heavenly Father is watching over us and our babies.
I'm left with mixed emotions again today. The nurse said that Jonah's head circumference is expanding with his bleeds and that is their current way of documenting the progression of the continuing bleeding. She said it will also be how they authorize a transfer for surgery. Babies at this gestation are so fragile that any specialist is hesitant to act too swiftly in deciding on surgery, transfers, etc. as it can be incredibly risky for the health of the child. So they ask for a lot of documentation proving that the head is expanding much more then it should be with whatever bleeding is ongoing.
I thought today the doctor would discuss surgery options with us but when we made it to the NICU this morning he had already left without any mention of Jonah's worsening bleed. We asked to speak with him and Shane had a chance to talk with him over the phone. His basic response was mixed, yes the bleed is worsening but we will watch it this next week before making decisions but his vitals are progressing normally. If it were not for his bleed Jonah would be right on track.
So we are grateful for his stable stats and that everything appears to be functioning as normally as it would be for this age. In fact, today his oxygen was much better than Noah's. Noah was having a rough day with his oxygen and they had made several changes to his ventilator. Although even with this, every time I look at Noah I see a better picture of health and my baby Jonah looks so vulnerable and weak.
Jonah does have a fighting spirit, I have sensed this more than once. Even today the nurse was changing him and took off his protective goggles to let us see his face and he started stretching his eyes and trying to open them. His right eye is nearly open and as I sat and talked to him he would respond and try to peak at me and I kept thinking, it's just a matter of days before this guy opens his eyes. Perhaps I am overly sensitive but at one point I could have sworn a little tear formed in the corner of his eyes and I got emotional because I've often wondered, how much pain do they really feel? Are they even aware of what a struggle they are going through? They keep them so sedated, partially so they won't fight their machines and partially so they will sleep and heal but I still wonder, how much do they comprehend? In those moments I try to vision God holding my babies close and whispering solace to their little spirits, it is the only thing that keeps me going sometimes.
We are getting ready to head out for one more visit today and then it will be another day, another start tomorrow. I'm trying to learn the importance of "one day at a time" perhaps by the end of this I will finally have it mastered.
Thank you again for your love and support, I don't think we'll ever be able to thank each of you enough for all you have done and continue to do. Just know that we are aware of all you do and thank God every day that so many people love our babies.
Love, Shane and Michelle