Saturday Afternoon Update

Coleman is doing really well today. I talked with Cardiologist this morning and they are waiting for the surgeon to come in today. They will talk with him about removing the drainage tube from the chest and other tubes wires and whatnot.
Please pray as this will be another big hurdle we will have to get over in order to get her out of PCICU and moved to another floor. We also need to pray that there would be a bed available on 7C for her to be moved. Once the tube is out we can hold her and love on her.
The doctor was pleased with how she is eating and resting, so the next step is removing the drainage tube and some of the other "stuff".
Thanks again for the prayers!

Scott

Good Morning -
Meghan and I decided to head home last night to get a good night sleep, which we got. We tried to get down to the hospital this morning early but didn't make it, the sleep was too good. We are allowed to visit with Coleman pretty much all day, except between 7:00 - 8:30 am/pm when they are doing their shift change and rounds. Since we did not wake up till 6 we called down to check on Coleman. The nurse said Coleman did really well during the night and took 6oz of milk this morning and was smiling a lot. We are hoping they will move her out of the PCICU soon and put us in our own room so everyone can visit, but not sure when that will happen.
Again thanks for all your prayers, love and support.

In His Arms
Scott

First Feeding since surgery

God is so good to us! You will read shortly Meghan's first posting on the situation. I just read the draft and I don't know why I have been doing all the writing, she would have done a much better job.
Anyway, I don't want to give it away, so I'll tell you what I wanted to say so she can finish her post. Coleman is awake and doing well and when we went in to she her the nurse said she tied to feed her but Coleman didn't seem to want it. We forgot to tell her that Coleman is pretty picky about who feeds her sometimes. So I got to feed my little princess. She did really well and as far as I know she has kept it down. After eating she fell asleep so we returned to the waiting room.
We will go down again soon and see her and I will give you another update. In the mean time I'm going to get Meghan to finish her post and I know you will be blessed by it. I was moved by her post and fell in love with her all over again.
I do have to share this... before Coleman's surgery Meghan said to me, (and I'm paraphrasing) The day of surgery should be the best day of our lives. Not getting what she meant she explained, with all the people praying for Coleman and us, it should be the best day. I have to say, May 30th was one of the top days of my life. I saw God working wonders with his Peace, His healing hands, and the love that everyone poured out on us.
Talk with you again soon
Scott

Seeing/Experiencing God

Where do I begin to explain my thoughts? I'm sooooooooo overwhelmed by God's goodness that I'm near speechless!! After Coleman's heart diagnosis in December, we grieved and were sad and didn't have much peace for a few days, maybe a week. Then, God spoke. God spoke several times. One time I was praying and just talking to God about my sadness that Coleman had to go through this and couldn't He use me and my body to do something that would bring Him glory rather than using my precious Coleman? (I had the sense that what I was feeling was not so different from what Jacob might have felt when he was called to lay Isaac on the altar. ) Although it didn't comfort me right away, I was impressed that God was saying, "you'll see me Meghan. You'll see my face and experience me through this whole thing. Expect to see and experience me at every turn!" While that made me feel better and definitely eager to see Him, I still wished Coleman didn't have to suffer. It wasn't but about 2 days later that I was sitting in church talking to God and I was impressed with several word pictures. I started to think about how God created this world we live in and what an amazing creator He is. We can definitely see a part of God by appreciating His creation. Then I thought about the ocean and all the wonders of the depths of the sea which most of us will only experience through the Discovery channel. In order to personally experience that part of God's creation, you have to be a diver and you have to have equipment that will either take you to the depths or that can go there for you as the deepest part of the ocean is not physically suitable for humans. (This is where I have trouble articulating my thoughts) Aren't there aspects of God that, like the ocean, will always stay a mystery because we just can't access it due to our humanness? Are there not also aspects of God that only a process of suffering can allow us to see and experience? When God revealed these thoughts and ideas to me, my immediate response was "thank you God for Down Syndrome and all that goes with it!" I want to see, know and experience God in new and amazing ways. My sense was that we were getting to go to some depths that we otherwise couldn't get to aside from this experience.

Well, as much as I love to worship and I feel so connected to God through worship, my worship experiences have never taken me to this place where I have recently experienced a new aspect of God's love!! God said to `expect to see' Him and we have indeed. We have seen Him in and through Coleman's success so far in this healing process. We have seen Him through the doctors, nurses, surgeons and other staff members here at MUSC. We have seen Him through other families in similar circumstances who are also believers and who also trust in God's total abilities to manage the Universe and to bring healing to our children. We have seen God also through the faces and hugs and food etc., of those who have come to visit or drop off food at home. And we have especially seen God through Charlotte and Jim White who lovingly cared for Tradd and Cooper and who have been at our beck and call. Finally, we have seen God through this blog and everyones' comments, through other notes and emails and through all the amazing people who have given us there bended knees and bowed heads throughout this process.

A friend of ours recently made a post regarding scripture in I John which talks about love. I John 4:12 says "No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us." (NIV) Essentially, we see/experience an aspect of who God is through the love of others! It seems that God has wanted us to experience the depths of His love through this because he allowed us to be so profoundly loved and blessed by all the support and prayers of people we know and even those we don't know. While I bask in God's love, experiencing it through you all, I'm beginning to wonder what this is preparation for!? God's purposes are multi-faceted and He surely has a plan for us to do something with this experience. I believe God teaches us things not only for our benefit but also for the benefit of others. What I'm trying to say is that there is another chapter to be written. Instead of 6 months with surgery looming ahead somewhat foreboding, I will wait eagerly and enthusiastically to find out what that next chapter will be.

Off the Ventilator

We just talked to the nurse and Coleman has been taking off the ventilator and is doing well. Her stats are all good and she is breathing on her own. She is sleeping now, which is what they want because they hear a "squeaking" noise in her chest, which is just from the fluid around the lungs. They have given her a steroid to help take care of that and do not have any concerns at this time.
We are so excited and can't wait to see her. This is a huge step towards being moved to the 7th floor children's hospital then home.
Thanks for praying and keep them coming!!!

In Him
Scott

June 1st Update on Coleman

We just went in to see Coleman and she had her eyes open. That is the first I have really seen them open since she has been out of surgery and I have missed those beautiful eyes.
Again they are talking about taking her off the ventilator (I know they have been saying that for the past 24 hours). They are giving her a "water pill" because of some fluid build up around the lungs. This is something she had before going into surgery and since the body has to learn how to pump blood with a repaired heart they want to make sure all the fluid is gone from the lungs. The nurse was really great at explaining everything (I think I need her to come blog for me) and she was very pleased with all of Coleman's developments. She has been around Coleman since she entered the PCICU.
Please pray that everything goes well today so they can get Coleman off the ventilator so we can see her beautiful smile, that is the other thing I am missing.
I'm heading home to play with the boys and will be there till nap time (good planning, dad gets to put them down for a nap and just maybe he will fall asleep too).
Love to all
Scott

Good Morning

Good Morning everyone. I don’t really have an update on Coleman yet this morning, but I wanted to let you know that the little boy who had a heart transplant last night is out of surgery and is doing well. Please continue to pray for little Gabe and his family as they have a long road of recovery ahead of them. I have to say Gabe’s parents are so strong in their faith. I thought Meghan and I were doing good going into surgery, but compared to what Gabe had done, Coleman’s surgery seems like a little hang nail removal. And Gabe's parents were at total peace, at least they made it look that way! God is so amazing and never ceases to keep me in Awe of Him!