Sophie Kate’s Journal

I took Sophie to see her pediatrician yesterday (Thursday, March 13) b/c she was still acting like she was in alot of pain.  Well, she was she has a left ear infection.  So now we are doing the 10 day antibiotic thing and praying that she starts feeling better soon.  We are now on our new feeding schedule, the nights have been going good, she usually sleeps until 3 or 4am before she has to be fed, that’s good for her.  Yes she is still being fed continuously at night but it isn’t enough to keep her from getting hungry all night long.  During the day she is up to almost 3 ounces every 3 hours, she usually takes about 2 ounces herself and then we put the rest through her feeding tube.  We need to get her up to 4 ounces every 3 hours, so that is the goal we are working towards.  Please pray that Sophie starts feeling better soon.  Hope everyone has a great weekend! 

We saw Sophie’s surgeon yesterday (Wed. March 12).  Everything checked out great with the surgery.  The doctor did an upper GI series and we saw no reflux coming back up after she ate and the stomach emptied quickly and properly..  Everything looked great as far as that is concerned.  Our doctor’s nutritionist gave us a new feeding schedule.  We are no longer on continuous feeds via the pump, we will now be feeding her with her bottle during the day and putting her on the pump at night that will feed her through her food.  Her doctor discontinued all of her reflux medicines.  She is still taking quite a bit of pain medicine.  The doctor said she should not be hurting this much this far out from surgery.  So we are going to try this new feeding schedule and keep going with her Tylenol and Ibuprofen. 

Please pray that we have a turn around soon, that her feedings will go well and that her pain will get better and better with each new day.  So many of you ask me how Sophie is doing and I know just once ya’ll would like to hear me say that she is doing good and that things are getting better believe me I wish I could say that too.  It always seems like there is one thing after another.  Please continue to pray for her we need your prayers so much. 

Hey guys, Sophie and I are going to see her surgeon tomorrow (March 12) at Children’s.  He wanted to see her after her trip to the ER this weekend just to make sure everything is OK with her I guess.  The past two nights have been better as far as her crying is concerned which is a huge relief even though Chad and I are still up every hour or two to regulate her feedings and keep her pain medicine going throughout the night.  Jury is still out on how tonight is going to be she is awfully wound up, I pray she will be able to settle down.

You know guys I am still almost daily at a loss for words when I look back on things before November 3, 2007 and since that time, life is completely different in every way.  I am at a loss when I look back on where we’ve been and the miracles God has already done and then my mind can’t even grasp what the future might hold for us.  I truly cannot let myself even go there.  I am so ready for Jesus to come back and to take us all home with Him, where according to Isaiah 35:10, “the ransomed of the Lord will return, and come with joyful shouting to Zion, with everlasting joy upon their heads, they will find gladness and joy and sorrow and sighing will flee away.”  Oh how I am ready for some sorrow and sighing to flee away and for lots of joyful shouting and everlasting joy to be upon all our heads, just covered all over with that everlasting joy.  I pray all of you are ready too and by that I don’t mean that you are necessarily wishing for Him to come back right now but that if He were to there would be no doubt in your minds that you would be in heaven too.  Get that stuff settled with God ya’ll, make Him Lord of your life today Do Not put it off any longer, b/c I want all of us to be there together, praising God for all of eternity. 

How to Become a ChristianThe central theme of the Bible is God’s love for you and for all people. This love was revealed when Jesus Christ, the Son of God, came into the world as a human being, lived a sinless life, died on the cross, and rose from the dead. Because Christ died, your sins can be forgiven, and because He conquered death you can have eternal life. You can know for sure what will become of you after you die.You have probably heard the story of God’s love referred to as the “Gospel.” The word Gospel simply means “Good News.” The Gospel is the Good News that, because of what Christ has done, we can be forgiven and can live forever.But this gift of forgiveness and eternal life cannot be yours unless you willingly accept it. God requires an individual response from you. The following verses from the Bible show God’s part and yours in this process:God’s Love Is Revealed in the Bible “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” —John 3:16 (NIV) God loves you. He wants to bless your life and make it full and complete. And He wants to give you a life which will last forever, even after you experience physical death. We Are Sinful “For all have sinned and fall short of the glory of God.” —Romans 3:23 (NIV) You may have heard someone say, “I’m only human—nobody’s perfect.” This Bible verse says the same thing: We are all sinners. We all do things that we know are wrong. And that’s why we feel estranged from God—because God is holy and good, and we are not. Sin Has a Penalty “For the wages of sin is death.” —Romans 6:23 (NIV) Just as criminals must pay the penalty for their crimes, sinners must pay the penalty for their sins. If you continue to sin, you will pay the penalty of spiritual death: You will not only die physically; you will also be separated from our holy God for all eternity. The Bible teaches that those who choose to remain separated from God will spend eternity in a place called hell. Christ Has Paid Our Penalty! “But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.” —Romans 5:8 (NIV) The Bible teaches that Jesus Christ, the sinless Son of God, has paid the penalty for all your sins. You may think you have to lead a good life and do good deeds before God will love you. But the Bible says that Christ loved you enough to die for you, even when you were rebelling against Him. Salvation Is a Free Gift “For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God—not by works, so that no one can boast.” —Ephesians 2:8-9 (NIV) The word grace means “undeserved favor.” It means God is offering you something you could never provide for yourself: forgiveness of sins and eternal life, God’s gift to you is free. You do not have to work for a gift. All you have to do is joyfully receive it, Believe with all your heart that Jesus Christ died for you! Christ Is at Your Heart’s Door “Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me.” —Revelation 3:20 (NIV) Jesus Christ wants to have a personal relationship with you. Picture, if you will, Jesus Christ standing at the door of your heart (the door of your emotions, intellect and will). Invite Him in; He is waiting for you to receive Him into your heart and life. You Must Receive Him “Yet to all who received him, to those who believed in his name, he gave the right to become children of God.” —John 1:12 (NIV) When you receive Christ into your heart you become a child of God, and have the privilege of talking to Him in prayer at any time about anything. The Christian life is a personal relationship to God through Jesus Christ. And best of all, it is a relationship that will last for all eternity.

How to Pray: Dear Lord Jesus, I know that I am a sinner and need Your forgiveness. I believe that You died for my sins. I want to turn from my sins. I now invite You to come into my heart and life. I want to trust and follow You as Lord and Savior. In Jesus’ name. Amen.God’s Assurance: His Word If you prayed this prayer,

The Bible says …“Everyone who calls on the name of the Lord will be saved. ” —Romans 10:13 (NIV) Did you sincerely ask Jesus Christ to come into your life? Where is He right now? What has He given you?“For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God—not by works, so that no one can boast.” —Ephesians 2:8,9 (NIV)

Receiving Christ, we are born into God’s family through the supernatural work of the Holy Spirit who indwells every believer. This is called regeneration, or the “new birth.”

This is just the beginning of a wonderful new life in Christ. To deepen this relationship you should:

1. Read your Bible everyday to know Christ better.
2. Talk to God in prayer every day.
3. Tell others about Christ.
4. Worship, fellowship, and serve with other Christians in a church where Christ is preached.
5. As Christ’s representative in a needy world, demonstrate your new life by your love and concern for others.

How to become a Christian and How to pray both came from the Billy Graham Evangelistic Association

Sorry no fancy title today not up for it , my creative juices are zapped.  Just wanted to update everyone on Sophie since her and her daddy’s visit to the ER Saturday night.  Sophie seems to be doing better.  Sunday night was definitely better than Sat. night and this evening (Monday March 10) has been going good as well.  We are not feeding Sophie by mouth right now, she is on the continuous pump and is doing well with that.  It is allowing her to get the food she needs just not all at one time, the surgeon wants to give her more time to heal.  They feel like her taking in the volume that she was as quickly as she was might be causing her pain this soon after surgery.  So our plan is to see her surgeon on Wed. and then hopefully be able to pick back up with bottle feedings if not at the end of this week then definitely by next Monday which will then be two weeks out of surgery.  Two weeks post surgery is what I am mostly hearing as the turn around point when things start to get better and stay that way, first two weeks out of surgery I am told are usually pretty rough, so we are right in the middle of it all right now and I have to admit it is pretty rough.  So we are just trying to hold on and are praying that each day is going to get better and better for our precious little girl.    

Saturday turned out to be a bad day for Sophie, over the course of the day her feedings went downhill.  Where she had been taking 3 ounces every 3 hours during the day, she got to where she would hardly even take 1/2 an ounce.  She has been crying again with feedings, I don’t really know what is going on, but it can best be described as she is acting like she was before she had the surgery.  We spoke to the surgeon on call for Children’s Hospital a couple of times last night (Sat. March 8), of course he knew nothing about our situation so it is always difficult to communicate with someone under those circumstances.  Anyway, he finally told us we were going to have to bring her in, so Chad took Sophie to the ER at Children’s at 1:00 in the morning.  They did some xrays to make sure her GT tube was still where it was supposed to be and then some other tests to rule some things out.  So bless their hearts they got home at about 6:00 this morning.  They gave us a prescription to help her with gastric emptying and motility, they thought that might be causing her some problems.  I’m still not sure that they are on track with what is really going on with her, I just know she is not the same baby that she was Wed., Thurs, and Fri.  We are going to be talking with her surgeon tomorrow.  Please continue to pray for her, her feedings and her pain, and that we can get all of this worked out for our little girl.

Hey everyone.  Well, we are home now and are getting settled and adjusted once again.  It is so great to home again, we really do have a renewed hope that we have taken some positive steps toward a better days ahead.  Sophie has done really well since she has been home.  Chad and I are only having to get up with her once during the night now, which is a huge change from before.  After living off of about 4 hours of sleep every night for 3 months, this change is certainly a welcomed one.  Over the past two evenings and nights it seems as though Sophie Kate is ready to give up the 2pm to 2am crying marathons as well.  We have actually enjoyed some family time with all of us together.  In fact, the day we came home from the hospital (Thursday) I took her outside to sit with me while we watched the boys play and Jacob said to me with a look of astonishment on his face, “Sophie Kate is coming outside too?”  It is so foreign to them for her to be involved in anything with them, for so long it has been them and her, not all of them together.  They are actually going to be getting to know her in a new way. 

Sophie is now up to taking 3 ounces from her bottle during the day.  At night she is fed continuously through her feeding tube which we have set up on a pump.  That is not quite enough for her yet during the night so she usually wakes up hungry once during the night, we feed her then and then turn her pump back on for the rest of the night.  Her surgery sites are healing well, we are still giving her Tylenol a few times a day, but she really is doing good with everything.

If I can steal from a previous post, the third time has got to be a charm here.  Sophie Kate is coming home today (Thurs. March 6) and God willing this will be the last time for a very long time.  We are so excited, I can’t wait to see my boys.  Sophie is still doing very well with her bottle feedings during the day, we are so thankful.    I think we can now safely say that SK has officially reached the double digits in weight, she is 10 pounds 1 ounce and she is only going up from here and I mean that in every sense of the word.  Thank ya’ll so so much for your prayers, your care and concern.  You are all so willing to share in this with us and to help us in so many ways, we are so grateful to all of you.  God has truly blessed us with such a caring community of family and friends. 

We are packed up dressed up and ready to take this party to the house!     

Hey, ya’ll.  Sophie Kate had a good day yesterday and a pretty good night last night.  I guess her biggest complaint is that they won’t feed her enough.  We were up last night for about 3 hours, she was getting continuous feeding last night to see how that would do through her feeding tube, but evidently that wasn’t enough for her highness b/c when I feed her an ounce of formula on top of what she was already getting through her feeding tube, she sucked it down in less than 5 minutes.  So it is definitely a good problem to have that she is wanting to eat as much as she is, the only thing is we have to take it real slow with her stomach right now so that she doesn’t get too much in at one time that could cause her problems.  So during the day today we will be working on her feedings by mouth and increasing those a little every time she eats and then tonight she will be on continuous feeding again only tonight it will be even more than she had last night.  She is doing really well with everything, she needed some additional pain medicine a couple of times last night in addition to the Tylenol she is on and I told her she better get the good stuff while she can b/c when we go home that won’t be an option for her.

Speaking of going home we are being told either tomorrow (Thurs. March 6) or Friday.  Sophie and I have decided on Thursday we just have to convince the doctors of that and believe me SK is doing her part in that, she’s doing so good.  She is so strong.  I can’t wait for her brothers to see her like this, they have seen her for so long do nothing but cry when they are around.  This is going to be so good for our family, for us to be together now.  Not one of us in another room with Sophie while she just cries all night, they are finally going to be able to get to know their sister and whether she likes it or not she is going to get to know her brothers.  Of course there will be no less catering to her, she will still get anything and everything she wants pretty much when she wants it, she prefers things to work that way and I am more than happy to do anything for her.  She’s so sassy.  Even in the hospital somehow she has managed to acquire 3 new stuffed animals, we are averaging 2 to 3 with each hospital stay.  There is hardly room in her bed for her own self, but I know she secretly likes all of the attention.  She thinks it’s all about her and I try to tell her it’s not, it’s all about Him.  I think she understands, she’s just having a hard time giving up the drama.  So I don’t know if the 40 days of fasting are up at our church or not but we are self imposing Sophie fasting drama and all of us fasting Children’s Hospital indefinitely.  Can I get an AMEN?! 

Sophie had a bath this morning, bout time sister, after a week one starts to get an odor about oneself, even if oneself is as cute as your self.

Hey everyone, Sophie has had a pretty good night.  I’ll tell you the strength in that little girl is amazing.  She hasn’t had anything for pain except Tylenol since midnight and that is saying something.  The power working in that baby keeping her pain at bay is just incredible, I’m not sure I would have believed it if I had not seen it myself (just call me doubting Thomas, I have to be shown everything).  Now, we have been up and down all night long with different monitors going off and giving the Tylenol and then checking the surgery sites.  We’ve not been asleep for any longer than 2 hours at a time and mostly just 1 hour at a time, which is why I am writing this at 4:45 in the morning, I just decided to give up on any more sleep tonight, b/c really all I have to do is lay down and get settled and an alarm will sound or something else will happen, guaranteed.  As for SK though she has really done well through her first post op night, Thank You Jesus for taking care of her!

The first song we heard when we got back in her room yesterday, got settled, got everyone else out and got our music turned back on was by tobyMac, and one part of the song says “This is the first day of the rest of your life.”  I so feel that for Sophie, this is like the start of another journey for us a different direction that the Lord is leading us in and through.  I know that better days lie ahead, He has given me that hope.  It is not going to be easy, we are learning a whole new way to take care of our girl and it is involved and tedious at times, but as we do it more and more and get used to it I really believe it will a whole new start for us.

This was taken right after surgery when we got back to SK’s room…

 This morning (Tues. March 4) resting peacefully…

Sophie went back for surgery at 12:45 (Mon. March 3), at 1:15 the OR nurse called us in the surgery waiting room to tell us that Sophie was asleep and that they were starting the surgery.  At 2:40 the surgeon came to tell us the surgery was over and went very well, no problems at all.  He said Sophie did great that she was waking up, breathing tube was out and that she was breathing on her own and was in recovery.  Praise God, great news.  We will be able to see her as soon as she comes out of recovery should be about 3:30.  We got back to Sophie’s room with her at 4:10, she seems to be doing pretty good.  She keeps fading in and out, hopefully she will be able to get a good healing rest.  Thank ya’ll for your prayers, keep them coming they are much needed.