Friday, August 1, 2008

Saturday, August 2

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.


9 comments:

Court said...

I am a friend of Kelly McMullen and just wanted you to know that we are praying for all 3 of you! May God give you peace and comfort in the hours and days to come. Praying for a miracle with you! Courtney

Cherie said...

Dear Steph,

We are sending hugs from Ohio.

Oldest Daughter said...

Glad to hear that she is slowly getting better. God will lead you all through this! I am continuing to pray for you all.

Amanda B.

Sue-Pea said...

Kyle, Steph and Suzie,

We are praying to our Great God and King that he would heal Suzie and give you both strength and peace!
Love in Christ, The Schmitts
Jason, Suzy, Scott, Hannah, Elijah and Shad

Kim said...

You, and your family are in my prayes! Kim

Cathy said...

How I praise God for the grace and faith with which He has given to my precious girl - Steph - and for such a godly, loving, inspiring husband with whom He has blessed Steph. Keep your eyes focused on the author and perfecter of our faith & remember each of His many promises - especially that He works ALL things together for your good. Nema can't wait to hold "My Petite Girl."

Becky Martin said...

Dear Kyle,Steph, and precious Suzie,

You are in my daily prayers. Thanks for being so faithful to post here so that we know more specifically how to pray. Thanks for tranparently showing how He has been working in your hearts. It is all for His glory.

Praising God for all that He provides,
Becky

Victoria said...

I am praying for you all and praising God that you and Kyle know Him and trust Him. Imagine the despair unbelievers go through when faced with similar situations. Our God is great and greatly to be praised!

Lopez Family Laughs said...

Hey Kyle, Steph and little precious Suzie, We Lopez fam in apt #5, just found out about your blog and are so excited that you are keeping everyone up to date so we can pray for you specifically. God is in the business of doing miracles and no request is too great! We are praying for your sweet little one, as well as wisdom and stregth for both of you. Love, George, Heather, Kalea & Chloe Lopez