Thursday, October 15, 2009

October 15, 2009

Another day has zoomed past, and here I sit trying to remember all of the details. By the end of the day, and quite often all day, my head feels fuzzy. There is so much going on all the time my brain feels like a ticking time bomb. The other day I told Jesse that I feel like we are leading double lives. We go from being Mom and Dad to Kayla at home, to Mom and Dad to Gabe in the NICU. While at home I feel somewhat normal. There are chores to be done, bills to be paid, playgroups and gymnastics for Kayla and all of the usual stuff we did pre-Gabe. Then there is the NICU life that feels crazy, confusing, scary and frustrating. I long for the day we can be Mom and Dad to Kayla and Gabe in the same place at the same time. Every day that passes with no improvement in the amount of fluid draining from Gabe's pleural effusions, I wonder if we are ever going to have that dream of having our family together. The harsh reality of this horrible NICU life we are currently living, is we don't know the outcome. I don't know if Gabe will ever get to come home; if he will ever get to play with his big sister, or go to the pumpkin patch, or open a present from Santa. My heart aches constantly with this knowledge sitting in the back of my head, that Gabe may not ever get better. I don't know why this is happening to this amazing little boy. Today he was watching his mobile and kicking his legs with excitment and I thought "Please God, please! Please heal my little boy. Please give us a miracle, becuase I can't imagine waking up a single day without him." I don't care if Gabe comes home with special needs. I don't care if he has to live with us forever. I just want him better and home with us where he belongs!

A lot of fluid drained from Gabe's chest tubes today. Every time I looked down at the tubes, there was more that had collected. I felt like crying every time there was more. I was really hoping this Octreotide would work, but it looks like it may not be the answer for Gabe. Everyone keeps saying "time," but you would think if the Octreotide was going to work we would start to see less and less coming out each day. Tomorrow Gabe is going in for an MRI. The MRI will focus on his liver. I pray we will learn something new about Gabe's liver and the masses. Something that will help us get him through this wall he is now up against. The ultrasound from earlier in the week showed the masses were growing. I don't know what this means and what can be done about the masses? If they were in one lobe of the liver, that lobe could be removed, but they are in both. At this point they are benign, but as the masses grow his liver grows and takes up more space in his body, which means there is less space for everything else. Gabe's potassium was still low today, so he was given more to try and bring that level up. He also received another blood transfusion. RT (Respiratory Therapist) "K" thought Gabe might breath a little better on the pressure support setting, so they made some changes to the vent and so far he seems to be doing well with the changes. After an echocardiogram this afternoon, we got the good news that Gabe's heart is still looking normal and going strong. Phew! There is a lot of strain on a really sick babies' heart, so it was a huge relief to hear Gabe's is doing well.

Tomorrow is a new day, and hopefully it will bring with it new information about Gabe.

We love you Bubba!

1 comment:

Robin said...

Life's ordeals, centered around a monther and father's love of a special son. Who knew our dear friends Shannon and Jesse would have to face such uncertainities that began with the joyous day of learning they were pregnant again... so long ago...

I am amazed with the love and candor you share your souls, your fears and wishes for what we all take for granted.

It is a valiant fight with unknown outsome, but the daily battles, successess and recovery from setbacks are the tempering that is the steel of a real family. I am in awe.