Sophie Kate’s Journal

We finally got to speak with the surgeon last night late and again today (Fri. Feb. 29).  Sophie Kate’s surgery is scheduled for Monday morning.  They haven’t given us a specific time but she is on the schedule for that morning.  The surgeon told us that he would be back by on Sunday to confirm everything and give us a better idea of the time of the surgery.  So the answer to your next question is “yes” we are going to have to be here all weekend.  Sophie is hardly eating anything at all so they are going to have to keep her on IV fluids up until the surgery.  She’s pretty miserable.  We were so disappointed that she didn’t have her surgery today, but we know this is all in God’s timing.  I believe something better awaits us next week, we just have to make it to that point.  Pray that God will give us the strength to do that, it seems like an eternity that lays before us until Monday, with Sophie hurting the way she is.  Thank you for all your prayers, care and concern.

Hey everyone, I talked to Sophie’s GI doctor today (Wed. Feb. 27) about her feedings, we are not even meeting the minimum requirements he had set for us.  He is admitting us to Children’s Hospital tomorrow morning, yes this is the third time in a month but hopefully it will be the last.  We will be meeting with the surgeons tomorrow to discuss Sophie Kate’s surgery and to set up a time for it.  For all of my nurses out there, she is having a fundoplication (don’t know if that is spelt right) with GT tube placement.  Basically that is creating a valve where the stomach and esophagus meet that allows food to go down, but allows nothing to come back up and then placing a permanent feeding tube directly in her stomach.  If this does everything it is supposed to do for us then Sophie will still be allowed to take as much as she can by mouth and then what she doesn’t take, that she still needs for growth and weight gain, we will be able to put through this tube that will be in her stomach.  So she will still have the opportunity to eat as much as she can herself.  This surgery is also going to prevent anything from coming back up out of the stomach into the esophagus, so we pray that this will eliminate the pain she is feeling in her esophagus b/c of the reflux. 

Both Chad and I feel at peace with this decision, we feel God has placed many people in our path to confirm this decision for us.  We really feel like this is the best thing for Sophie.  This is surgery, no one is taking this decision lightly, we know that God will be going with us and with her especially when she goes past those doors into surgery where her parents cannot go.  Please pray.  Pray, Pray, Pray.  Ya’ll know the situation and more importantly God knows the situation, there is no need at this point for me to specifically ask ya’ll to pray for a whole list of things.  Just pray for our baby girl, God will hear your prayers.

Don’t let anyone tell my sassy little Sophie that she may be headed for surgery, her and her God can do anything together but they cannot be predictable.  Today (Mon. Feb. 25) we saw Sophie’s GI doctor and he is going to give Sophie one week to see if she can handle eating on her own with no tube and to see if the medicines we are using to treat her reflux are working.  We have been given certain guidelines and certain goals that she has to meet each day as far as her formula intake and if she doesn’t then of course we would be going back to the doctor before one week, but for now we are going it sans tube, yeah!  We are so happy that awful tube is gone and now we can really concentrate on her feedings, her sleep cycle and resuming her therapy. 

Speaking of her feedings, I got to feed my baby girl for the first time in 2 1/2 weeks, this morning.  I just bawled and was thanking God, b/c do you know that that little thing didn’t miss a beat.  She took that bottle as if she had been taking it for months, now she is not taking as much as she needs to be yet but we are working on that.  I was just overwhelmed, when you are denied the opportunity of providing your baby with very basic care, you come to treasure those moments when they become available to you and treasure it I did.  With thanksgiving and praise to our God, the three of us sat there together and soaked up the moment.  Yes I know God was there with us smiling and enjoying that moment with his children. 

Please pray that we do the best thing for Sophie Kate.  We are seeking God’s wisdom in this and do not want to take one step without His guidance and direction.  His presence and nearness is life to us and we do not want to do anything outside of His perfect will.  Thank you for your prayers. 

This is what a contented baby looks like…

Hey ya’ll, my fingers are about to jump off this keyboard, I can hardly contain myself over what God has done tonight!  I wish each and every one of you were sitting right in front of me right now so I could tell all of ya’ll this story face to face.  This computer and the words on this page cannot possibly do justice to the events that have unfolded tonight.  Please indulge me as I take you through everything step by step to leave anything out would be doing a serious disservice to our mighty God. 

I’ll start by saying that Sophie’s tube came out tonight (Sun. Feb. 24 at around 6:00pm) and believe me whatever ya’ll are thinking is exactly and probably more of the same thing that we were thinking at the time.    We called her GI doctor and he told us to go in to the after hours clinic at Children’s South for an xray, actually I said the tube had come out but at this point it was only partially out b/c Chad had noticed the tape had come loose and that the tube was starting to work itself out and had stopped it and had re-taped it.  So the doctor wanted us to get an xray in hopes that the tube may have not been pulled completely out of the small intestine.  So off we go thinking all manner of things that have to do with “why?”  When we get to the after hours clinic and are in the process of signing in we are approached by a nurse (this is before we have even sat down to wait who knows how long with all the other children holding puke buckets in front of their faces, yuck).  Anyway I actually thought she was going to be taking us back for our xray, WRONG little did I know then but she was the first angel God placed in our path tonight.  She started talking to us about Sophie, yes she knew we were coming b/c our doctor had called ahead of time to tell them what he wanted them to do.  Her daughter had had a TP tube too for 2 months, did I mention we’ve only had ours for 2 weeks b/c it seems like 2 months to me.  Her daughter also had bad reflux problems, her daughter had also been on all manner of medications.  Here’s the kicker, her daughter also has neurological issues, spent time in the NICU at birth, just had the same exact surgery our doctor has been talking to us about for weeks, and is one month, yes you heard me one month older than Sophie Kate.  Wow, this family is basically us just a couple of steps ahead of us.  We were finishing each others sentences.  We had an instant connection and were talking like we had known each other for years.  In fact Chad who had been walking Sophie around b/c of course she was crying was asking me if I knew her.  I’m like no she just came out here and started talking to me.  Ya’ll it was unbelievable, I am getting chills just talking about it again.  Well it doesn’t end there, everything I told her about that we had been through with Sophie and the things we were struggling with now she had so been there and understood first hand how we were feeling.  She even went on to say that this surgery was the turning point for her baby and her family and that things have been so much better.  We even went into very specific details about the surgery itself, recovery time and what it has been like since they have been home.  She was so positive and upbeat about everything.  Really it was like God was saying I know you cannot see into the future as I can, but through this person I have placed in your path tonight I am going to show you a glimpse so pay attention. 

Well we got the xray and sure enough the tube was out of the small intestine and was in the stomach.  So Chad and I were like, ok we really don’t want to put another tube in so how are we going to talk to our doctor about this.  No problem God had already taken care of that too.  When we got on the phone with him he said yes the tube is out we basically have 2 options now, one is to put the tube back in and give this a few more weeks or we can talk about going forward with the surgery.  Yeah, I think we would like to talk about the surgery.  So that is exactly what we are doing tomorrow (Mon. Feb. 25).  This nurse gave me her name, cell phone number, and email address so that we can keep in touch and she said for any further questions we might have.  I am not exaggerating when I say she has been through everything we have been through.  It was truly amazing.

We leave Children’s with our plan to see the doctor tomorrow and of course I start making phone calls to try and get children taken care of tomorrow and to let people know what is going on.  In getting off the phone with my mother she says to me I am going to call a friend and prayer warrior I know and get her going on this.  A few minutes later my phone rings and we don’t recognize the number and almost didn’t answer it.  Boy am I glad we did, it was my mom’s friend who told us she felt led by the Holy Spirit to call right then and pray with us over the phone.  I too felt the presence of the Lord with us and between us and in the heart of this precious woman.  I don’t even know her and yet she called me by the urging of the Holy Spirit, we talked and she prayed and get this she too had a son who had to have this same feeding tube. These are not two random people, these are two people who have been through the same things that Chad and I are going through with Sophie right now.  They were placed in our life at this moment for a purpose, talk about a divine appointment.  

God so orchestrated this whole thing, it has His signature and His handiwork written all over this one and praise Him He opened our tired, weary eyes so we could see.  Thank you Jesus, You are so faithful.  Faithful is the word that comes to mind, He has not left us, He has not forgotten about us.  He sees, He knows, and He does in His time.  Wait upon the Lord, we have waited and He has shown up in a big way!  I have been brought to my knees again as I have been many many times since November 3, 2007 but this time it is not in a desparate pleading cry.  It is a cry alright, a cry out of praise, adoration and worship for the mighty God we serve!! 

Hi everyone.  We ordered a baby scale for our house so that we can keep up with Sophie’s weight gain ourselves and make sure that she continues to gain properly.  She is now 10 pounds 2 ounces, we finally reached double digits, yeah!  That’s definitely a milestone, we have hung around in the 9 pound range for so long.  She is so long too she hasn’t been measured lately but she is definitely tall.  Weight wise she is still in newborn clothes but because of her length she is now in 3-6 month clothes in outfits that have feet in them. 

Speaking of clothes, now that we have basically been confined to the house for 4 weeks, which as of today (Sat. Feb. 23) we have completed 2 weeks and have 2 weeks to go, we are certainly not being able to dress for success as we had been before when we were able to get out and about more.  Not only has Sophie gotten into a rut of sleeping all day and partying all night but she has also gotten into dare I say quite a fashion rut as well, which I suppose can be partially blamed on me.  The outfits these days consist mostly of one piece frocks (shout out to my friend Beth) with either zippers or snaps that while comfortable I’m sure do absolutely nothing for a girl’s confidence level.  While these outfits can be quite cute, Sophie and I have decided that with the extensive wardrobe she has that we can do better than this at least a few days a week.  So friends get ready because you are going to be seeing less and less of this girl wallowing around day after day in her footie pajamas which I’m not saying she doesn’t look adorable in because baby girl you do, but we know better and we are going to do better.  So now that we’ve got that off our chest we are going to get out of our footie pajamas and get dressed for the day.  Have a good weekend everyone, hope you all have some great family time! 

Hello everyone, sorry for the few days with no info, I was sick with a virus yesterday (Wed. Feb. 20).  Things are better today.  Thanks to my sweet friend Theresa for coming to my rescue.  As for Sophie Kate, her feeding tube is still in (yeah!) and she is still sleeping a whole lot.  I am talking like newborn just home from the hospital sleep.  We have gotten into a terrible rut.  She sleeps all day and wants to party all night.  I hate the thought of waking her up during the day, she has been through so much and I feel like she needs her sleep.  The evenings and night time are still very difficult with her being up and crying.  If we could just learn how to be up and not be crying it would make a world of difference.  Bless his heart Chad was up until 3:00 in the morning with her this morning she just wouldn’t settle down.  He was so good to let me rest since I was sick. 

Please pray that this tube will do what it is supposed to do for Sophie, which is, to allow her esophagus to heal from the damage done by the reflux.  Pray that God will take away the discomfort and irritation that she has with this tube in.  Pray that her reflux will be controlled by the medications she is taking and that she will start gaining weight.  Pray also for her peace and comfort and that we can work out this awful pattern that we have gotten into of sleeping during the day and being awake at night.  Sophie’s doctor wants us to keep this tube in for 4 weeks.  Well, during this time Sophie is not taking a bottle at all.  Please pray that when this tube comes out that she will be able to suck and swallow her bottle all on her own and that she will be able to take the amount of formula that will be required for her then.  Also, continue to pray for her head and brain growth this is so huge to her development.  As always we are certainly still praying for complete healing for our little girl.  These past 2 hospitalizations have kind of taken center stage recently, but please continue to pray that God will touch her little brain and perform what could only be described as a miracle.  Pray also for her continued therapy, we had been making such positive strides until all of this happened with her being put in the hospital.  It has been some time since she has been in therapy please pray that as we get back into doing all of this again that she will respond positively and make great progress and that we will do the things for her that will benefit her the most.

Thank you so much to our prayer warriors out there.  Your intercessions on behalf of our sweet Sophie to the very throne God mean so much to us.  We know that we are not in this alone.  Blessings to each of you.

As I sit here today (Sun. Feb. 17), I can’t help but feel that the weather today is an outward reflection of my mood and how I feel.  Cloudy, raining, gray, cold (I really don’t know if it’s cold outside b/c I haven’t been out but it should be) and no sunshine in sight; that is how I feel more often than not these days.  Sophie is sleeping comfortably which is what she does best at this time of day.  I see my baby girl sleeping and then I see her feeding tube and then I see the pump that is hooked up to her tube feeding her and then I see all of her medications and all of our papers to keep everything straight and on schedule and then I think to myself, “Is this really real?”  Is this really happening?  This is not the way it was supposed to have been.  I finally got my baby girl, this cannot be happening.

God has allowed this to come into our lives for some reason.  I do not understand any of it and I try only with the help and strength of God and those He has surrounded me with not to be consumed by it.  It is so difficult not to just spiral down into despair, I think that would be so easy and I am so tired of trying to keep my head above water.  God won’t let me do that though, somehow He has kept me from it.  I guess that’s where that peace that surpasses all understanding comes in doesn’t it?  He has so lovingly shown me that this is not my life, He is my life.  My life is not defined by the situation I am in but by who I am in Christ and to Him I am special and loved.  We all are.  Being a daughter of the King, having accepted Him as my personal Lord and Savior I have worth and hope beyond what this world can offer.  Things of this earth bring pain, suffering and heartache God brings to our souls hope, strength for today and a promise of eternal life with Him in heaven after the things of this earth pass away and they will.  The things that we hold dear, the things that we place importance on that are of this world are of no value and are meaningless if we are apart from God.  It is only in seeking Him and knowing Him that we will find our true value and worth.

It is no coincidence that I am doing this Bible study in Psalms at this time in my life, it has certainly been ordained by God Himself.  The truths and the promises of His Word have been the only thing I can cling to with any certainty.  Praise Him for His Word that ministers and speaks as loudly today as it did 1,000 years ago.  Psalm 126:5 says “those who sow in tears will reap with shouts of joy.”  I love that because we are really sowing in tears here and I can keep the faith as I keep striving toward that promised day where there will be shouts of joy!  Psalm 126:6 “So those who went off with heavy hearts will come home laughing, with armloads of blessing.”     Wow, how that speaks to my heart.  God has shown us through this how to see His blessing, it is not just what He can do for us.  I am blessed because I am living a life that God is involved in and is actively working in.  A life that is surrendered to Him and the blessing comes from serving Him.  Sophie may not be viewed by the worlds standards as a blessing in fact I am quite sure of that, but to God and to us she is our “armload of blessing.”

We got to come home from the hospital on Wed. February 13, only to have to turn around and go back there on Thursday morning because Sophie’s feeding tube came out after we had only been home about 2-3 hours.  We were just sick about it.  So we went back this morning for them to place another one and then we all came back home again.  Pray that the tube will stay in this time and also that it will stay in the right place.  Pray also for Sophie to be comfortable and pain-free b/c she isn’t and the evening and night times are still very very difficult.  Please pray for our family, this situation is just impossible and everything we know and think and do has been turned upside down and I don’t know that it will ever be right again.  I just feel like there is no relief in sight.

Hey everyone, yes we are still here today(Wed. Feb. 13).  We were told we would be going home Monday then Tuesday then Wednesday.  Now no one is telling us when we are going to get to go home so maybe it will be today.  Sophie is being seen by the neurology team here at Children’s today and she will be getting an EEG this morning.  This is just precautionary while we are here in the hospital to make sure there have been no changes on that front.  There is not really anything to indicate that there has been so they are checking things out just in case. Yesterday, we had another x-ray just to make sure the feeding tube was still in the right place and it is so everything is OK concerning the feeding tube. 

Our prayer today is that the doctors will see everything through God’s eyes, that He will give them the wisdom they need in order to care for Sophie and to provide for her medically in the best and most effective way possible.  He has always been actively involved in Sophie’s life and we know that today will not be any different.  We need His strength just the strength for today.  Please pray for Sophie’s comfort, peace and rest.  We love you all and thank you for your prayers and concern.   

Well, we are still here.  We had a little trouble over the weekend with the TP tube coming out of the small intestine and going back into the stomach which is where we do not want it to be.  Since yesterday morning (Sun. Feb. 10) at 7:00, the doctors believe that the tube is back in the small intestine where it should be and last night we had another xray confirmation that it was still in the same place.  Sophie was a bit more fussy yesterday evening which made us think it had come out again but thank goodness that was not the case.  Last night she had some periods of fussiness but nothing compared to what we had been dealing with at home and she was able to settle herself back down and slept pretty good most of the night.  So today (Mon. Feb 11) we are just waiting and seeing how she responds today and how she handles her feeds going through her feeding tube.  The doctor has not been in yet this morning so I have no idea what our plans are for the rest of the day.  I will update when I have more information.