We will begin this post with all the positive and wonderful things we got to experience with Jacob today.
I got to change Jacob's diaper today! For many of you this may seem silly or possibly on the gross side, but it was one more thing that Jeff and I got to do with Jacob that we thought we would not get to do. One thing they have been saying about Jacob is that his kidneys are really working well...he must take after me! ;)
We read a book with him called I Love You Through and Through. It starts out by saying all the things that you love about your child, "I love your top side, your bottom side, your inside, and outside." Jeff and I took turns reading each page to Jacob. I added some things into the story, as most teachers would do. I know Jacob heard us and being able to tell him how much we love him, face to face, was so special. There's nothing like reading a story to your newborn baby!
While these two things were very special, this is not the full picture of what we are going through in the NICU. In fact, today was quite depressing for Jeff and I. Jacob's day was okay and some progress was made with his ventilator and decreasing of some medicines. However, our discussion with one of the surgeons left us feeling like there is long road ahead even before the next surgery. He indicated that the surgeons want Jacob to be off the ventilator completely, or almost completely, before they will move the liver into his abdomen. He also indicated that moving the liver wouldn't solve our problems, that Jacob's lungs would still have to overcome so much in order for him to survive.
Our hearts are heavy today. We had so much hope in the first few days after birth and leading up to the first surgery, Jacob was defying all the odds. We had wanted so much for the first surgery to work and be on the road to recovery. Instead we are in this waiting period, just seeing what progress Jacob can make. In order for us have any hope for recovery and to bring our son home, Jacob needs to work his way off the ventilator. The nurses, doctors, and surgeons don't think that this will be possible for us. If it does happen, it will be a long, slow process.
We know that with God, all things are possible, and we have come this far by the Grace of God...so please pray for our "Glorious Impossible" and that Jacob can come off the ventilator sooner than expected and with far better results than can be explained by modern medicine.
Many Blessings to you all!