Sophie Kate’s Journal

So this is what it feels like to have a baby that is sleeping comfortably and peacefully.  Now I am stuck up here at the hospital with no one to talk to, Chad is reading his book and obviously is wishing that I would stop talking to him, so I will talk to ya’ll.  I took this picture of Sophie Kate with my camera phone, we didn’t bring our camera up here with us because why would you, so please excuse the quality of the picture.  I thought this was so funny.  This is SK’s response to all the doctors and nurses who keep coming in here disturbing her beauty sleep.  Back off!

No, this is not a repeat of the post ya’ll read just over a week ago.  Yes, we really are back at Children’s Hospital (Fri. Feb. 8) one week from the day we were discharged last time.  Sophie has been admitted for dehydration and of course our ongoing struggle with poor feeding and the pain she has been experiencing.  She has been given an IV and a TP tube for my nurses that’s a transpyloric tube.  The tube she has goes in through her nose, down through her esophagus, through her stomach and sits in her small intestine.  The purpose of this tube is to let her esophagus heal.  She will not be getting any of her formula by mouth, she will be fed all of her formula through the TP tube.  The food will then bypass her stomach and go straight into her small intestine this way her stomach will not get full and reflux up into her esophagus and cause further irritation and damage.  They are still giving her her medicines for reflux.  We will be here at least over the weekend.  The plan is to get home health nurses out here on Monday to show us how to do these feedings at home and hopefully we will be able to go home then.  We will be taking her home with the TP tube in.  On the positive side she has gotten some good rest already.  Once she got her IV in and got some fluid in her and got re-hydrated she slept a good deep sleep, which I am so thankful for.  She just needs more of that. 

Please pray for deep healing painfree sleep.  Pray for healing for her.  Pray that this tube will be all that we need to get this reflux thing under control that it will allow her esophagus to heal and that she will be able to take her formula by mouth again when that time comes.  Pray for my baby boys.

We are on such a journey with God.  He has shown Himself faithful to us, both in times where we felt Him very near us and in times where I felt like He wasn’t hearing me anymore.  My faith has been shaken to the core, the core of what do I really believe, I believe in Him but do I really believe Him and His Word and His promises.  His faithfulness has not been shaken even though I have felt mine waver (especially of late).  I have questioned, been confused and cried out with such passion to Him and yet He has stayed right with us, holding our hands and mostly just flat out holding us up.  I do not understand any of this, but I do know there is a purpose and a plan, the Master is at work and I am best suited to trust and let Him work and let Him work in me.  

Thank you to our family, friends and church body.  You are a constant that we know we can count on around the clock and the best thing you do for us is to pray for us and take care of our boys for us while we are taking care of our sweet Sophie Kate.  We treasure you, you are such a blessing to us.  What a support system God has blessed us with! 

Sophie’s feedings have dropped off again in the last 24 hours, she is still in a great deal of pain.  We took Sophie back to her gastroenterologist today (Thurs. Feb.7).  Her weight was 9 pounds 6 ounces.  She has been ranging anywhere from 9 pounds to 9.6 pounds for about 3 weeks now.  Her doctor is certainly concerned that she is not eating well.  He has discontinued one of her reflux medicines because of the side effects she was experiencing and described our situation right now as “walking a tightrope.”  Are things going to start getting better for her so that she can increase her feedings and start gaining weight or is she going to continue going downhill with her feedings due to the pain she is experiencing?  If Sophie can’t get her feedings up soon she will have to be hospitalized again and have a temporary feeding tube placed to allow her esophagus to heal properly.  I know I don’t even have to say how disappointing all of this is to us, we were so encouraged last Friday to get her on the medicines we thought would start to make a difference for us and turn around this awful experience for her and us.  Please pray for her, I don’t even know what to ask you all to pray for anymore.  I dread the thought of another hospitalization and at the same time it is unbearable to be in this house listening to her cry out in pain and not be able to do anything for her.  Just pray, pray for relief in some way, pray for an end to this horrible pain she is experiencing and pray for my precious boys they should not have to go through this, they need us just as much as Sophie does.  Things are just so difficult here right now, please pray. 

We went to see Sophie’s neurologist today, just for a check up this appt. had been set up for us ever since we left the NICU.  These have always been our most difficult and dreaded appointments due to the type of information that we have received.  Today, however, was a different story.  Sophie’s doctor told us she was doing “remarkably well” in fact he said it more than once.  He said he was pleased with her progress and that she was alert and that she looked good.  Remarkable indeed! Our God is very remarkable and He causes the things around Him to be remarkable as well!  Even in the darkest of circumstances and a grim prognosis God is able to show Himself remarkable.  What an encouragement to our heart and soul it overflowed with joy and thanksgiving.  God has given us all these blessings, to Him be all glory, honor and praise.  When we fix our eyes on Him and seek His face, whether in good times or bad, joy or sorrow, we are still focused on Him.  It is not about us and our desparate circumstances or us and our good report, it is always and will always be all about Him!

Today (Sunday Feb. 3) had been planned as the day we would have Sophie dedicated to our Lord.  In light of her recent hospitalization, we decided it would be best for her to rest and heal and reschedule for another time when she was feeling better.  As my heart was saddened a bit by having to cancel, I thought about how starting the day she was born and every blessed day after she has already been dedicated to our Lord, her Creator and Redeemer.  He has used her life to bring glory to His Name.  His mighty hand is upon her and never leaves her.  There is not a time when He is not attentive to her every need.  When her mama and daddy fall into bed from complete exhaustion, I know her Heavenly Father is not sleeping as He keeps constant vigil at her side.  We will schedule another day to publicly dedicate our baby girl to her Heavenly Father, but I will know that it is an outward symbol of praise and celebration for what our loving and faithful God has already accomplished in her life and what He will continue to do in the future.

Please pray this week for Sophie as she continues to heal.  She is still in a great amount of pain and while we take comfort in knowing that she is on the road to recovery, it is so very difficult to watch her cry out and hurt.  Pray that the medicines work efficiently and quickly to heal her.  Pray for her comfort and for healing rest.  Please pray that she will gradually increase her feedings so that we can get them back up to where they need to be so that she will grow and thrive.  Pray for the kidney stone that it will pass quickly and without incident.  Pray that the hemangioma on her liver will decrease in size.  Thank you, Thank you, we are blessed by your commitment to pray for our little Sophie.  We know that God hears the prayers and knows the hearts of his people and those who diligently seek Him.  Blessings to you and your families.

I just wanted to share a song with ya’ll that has taken on a whole new meaning for our family since November 3, 2007. 

What If His People Prayed by Casting Crowns

What if the armies of the Lord
Picked up and dusted off their swords
Vowed to set the captives free
And not let satan have one more

What if the church, for heaven’s sake
Finally stepped up to the plate
Took a stand upon God’s promise
And stormed hell’s rusty gates

Chorus:
What if His people prayed
And all who bare His name
Would humbly seek His face
And Turn from their own way

And what would happen if we prayed
For those raised up to lead the way
Then maybe kids in school could pray
And unborn children see light of day

What if the life that we pursue
Came from a hunger for the truth
What if the family turned to Jesus
Stopped asking Oprah what to do

He said that they would hear
His promise has been made
He’ll answer loud and clear
If only we would pray

If My people called by My name
If they’ll humble themselves and pray
If My people called by My name
If they’ll humble themselves and pray

Wow, that is powerful!  Our church is in the middle of a prayer emphasis, where as an entire body of Christ we are praying as one for the ministry of our church that we would be able to reach our community and beyond for Christ, that we would encourage and pray for each other, that we would be a united body of believers seeking the will of God in our own lives.  Our little Sophie is a living, breathing, show and tell testimony to the power of prayer.  God can and will be so active and so powerful in our lives when we seek to grow that relationship with Him through prayer.  There are so many things I can and have shared about the power and miracles God has displayed before us concerning Sophie Kate and I will not ever be able to stop talking about all that our Lord has done, but there is one thing over the past few months that God has shown and taught me concerning prayer. 

In pouring out my heart to God and seeking Him, crying out to Him and talking to Him, I have found that my relationship with Him has grown deeper and more meaningful.  I have also found that in my prayer life He has grown and matured me.  My prayers that for so long were solely and desperately crying out for healing and strength have been guided by the gentle moving of the Holy Spirit to shift from focusing on myself and my own wants and desires to God and what He is going to accomplish through all of this.  We don’t want to be where God is not at work and He just cannot be at work in us and through us when our focus is on ourselves and not on Him.  What would happen if His people prayed? What would happen if the people of God earnestly and humbly sought His face? Well, we are living with a visual reminder of that everyday, but really our words cannot do justice to the power and the moving of God Almighty on behalf of His children on their knees seeking His will and following His plan for their lives.

We just got the news that we had so been hoping for today.  Sophie is coming home from the hospital today (Fri. Feb. 1).  We are so excited to be taking our little one back home with us and with her brothers where she belongs.  The Lord has been so good to us and once again shown himself faithful in providing for our every need. 

The urologist said Sophie should be able to pass this kidney stone herself without any medical intervention.  He also said that it was very small (1mm) and that she should not have hardly any pain with it at all.  What an answer to prayer!  As far as the liver is concerned, Sophie has an abnormal collection of blood vessels called an hemangioma(not sure if that is spelled right).  No treatment at this time, the doctor said we would just monitor it over time for any changes in size.

The big one is the reflux.  Sophie’s doctor said she has abnormally severe reflux which he said is the source of all the pain that she has been experiencing over the past two weeks.  He stated that she has lots of episodes of reflux during a 24 hour period and that when she refluxes the acid stays in her esophagus for a long period of time and is slow to drain back down.  He said that we are going to aggressively treat her reflux with three different types of medicines. 

While we didn’t love the idea of being back in the hospital with Sophie, we are so encouraged by everything we found out while we were there.  This is treatable and we have a plan now for getting our sweet Sophie some relief.  Our prayer was that these tests would be conclusive and that the doctors and nurses would be given wisdom in providing treatment and relief for our baby girl.  God has once again seen us through a very difficult time and brought us through, the better for it, on the other side.  We give Him all the glory and praise for what he has done in Sophie’s life and for what He will continue doing in the future.

Well, everyone we are still here, but the good news is that Sophie did get to have her CT scan this morning (Feb. 1).  Praise the Lord, we had specifically prayed for that.  They also came this morning and took out the ph probe that had been placed yesterday.  Those results should give us some good information about her reflux.  So right now we are playing the waiting game.  We are waiting on results from ph probe and CT scan of her kidneys and liver.  Sophie’s urologist came by this morning and said he would get back with us today, we just don’t know when and then her gastroenterologist usually comes by sometime after lunch.  We will give more info when we can.

  Thanks to Mimi and Pawpaw for coming on short notice and jumping in there with the boys.  We know that they are well loved and well taken care of.  We appreciate all the help from our family and friends in answering the call for extra help this week.  We are so blessed by all of you and your willingness to help us on very short notice.  Thanks to everyone for your prayerful support.