Today was an especially difficult day for me. I have cried many times over the past two weeks, but today I really cried. I cried for a long time. I think the reality of what my little girl might be facing over not just the next few weeks, but for the rest of her life, is starting to set in. As a mother, I want so badly to take away all her pain. I would endure it all for her if I could. Yet I keep coming back to the reality that the Lord never gives us more than we can handle. That goes for me and Kyle and also for Suzie! The Lord has chosen to give and sustain her life for a reason. Our prayer is that we will lean on Him and trust Him more and that unbelievers around us might see God's glory in all of this and give their lives over to Him. The truth is, as much as I pray and desire for our little girl to not have severe effects from the bleeding in her brain, even more do I desire for her to spend eternity in heaven with our great God. If she has to endure a difficult life here on earth before she ends up with Him, that is far better than to have all that the world has to offer for a short time and then be a part from the Lord for all eternity.
What prompted this difficult day for me was that yesterday they took her off of her pain medication drip. They had cut the amount in half a few days ago and completely took her off it yesterday. The nurse said the longer they leave her on it, the more of a chance she has to become addicted to it or it could end up causing further complications in the brain. When Kyle and I went in there (yea for Kyle being able to go in again!) she was one unhappy little camper! Her legs and arms were flailing around and you could tell that she was crying even though she can't make any noise due to the tube in her mouth. It was so hard to see that she was obviously not comfortable and possibly even in pain. It broke my heart to have to see her go through that.
Another difficult piece of news we received is that they did find that her little brain had swelled even more. We haven't talked with the neurosurgeon yet, but the doctor was confident that they will operate some time next week. They will put in a reservoir into her ventricles where the fluid will build up on the surface of her head and they will drain it every day. When she gets old enough, they will put put in a shunt that will automatically drain the fluid into her abdomen to be reabsorbed by the body. She would have to get it replaced when she is a few years old. The doctor said that this operation really isn't too concerning. There is a slight risk of infection and also a risk of blood clotting, so they will be watching for both of those things. But he reiterated that the damage that has already been done in her brain tissue is by far the most concerning issue. We rehashed all over again their opinion that Suzie will most likely have moderate to severe brain damage.
We did find out some good news though. Suzie's PDA closed! Her oxygen has been set in the 20s which is wonderful, but the nurses have told us to expect it to go up and down for a little while. They are hoping to get her onto a new ventilator soon, a mask that goes over her nose rather than a tube down her throat, so that will be a good day for us! Suzie has been tolerating her feedings quite well so they have been able to increase it a little and will continue to do so as long as she continues to do well.
Again, I have to tell you how wonderful my husband is. He has such strength and compassion. He is so tender and loving. He is a great example to me as he clings to Christ during this time. I praise God for him and for so many people who have come alongside us during this time and are bearing our burdens. We have so much to thank God for even now. He has shown us so much tender mercy and gives us FAR more than we deserve!
We posted another little video of our little mover. Hope you enjoy and thanks again! Please continue to keep us in your prayers.
3 years ago