Well, they have decided to hold off on Little Bug's surgery next week. The surgeons and docs want him to be further away from whatever sickness he has had over this past week. They will consider putting him on the schedule for the week of the 21st or the 28th, but as of the moment, nothing is scheduled. It will all depend on how Connor does to see if we will remain in the ICU for a longer period of time or if they will try to make room for us on the floor maybe next week. I know that our thought is that if we have to wait for surgery, we'd rather wait at home, but for now, there is no word on how long we will be here.
This was certainly not the news we were hoping for, but we have to trust the decision that was made and hope that it is in Connor's best intrest. How we wish to be free from this hospital and home and healthy. Oh Lord, give us increased strength and patience for this journey we are traveling!!!
Lovebug Hugs,
Lori
Friday, August 11, 2006
Mama's Reminiscing.....
Mama and Little Bug just under 2 weeks ago....Look at what a little man he looks like!!
Mama showing just how "in love" she is with Little Bug!!!
Even though Connor doesn't feel well, he still likes his magic chimes and toys!!
Off the c-pap the other day with just a little bit of oxygen!!
Back on c-pap yesterday and pooped out!!! Notice Little Bugs mirror....He loves to look at himself, it's so cute!!!
Just last week this picture was taken of Little Bug with his bug puppet while we were camping.
Notice that Connor is in his own craddle while we are camping. Grandpa R. made a super neat platform for Little Bug's craddle to sit on. It worked just perfectly. Thanks Grandpa R., we promise we will try to use it again real soon!!
Daddy signing to Little Bug.....He was totally enthralled with Daddy's silly songs!!!!
Happy 7 Month Birthday Little Bug!!!!
Little Bug is officially 7 months old today. He just got weighed moments ago and he is 13 pounds 4 ounces, and 25 inches long. He is doing well considering what he has been through. The best birthday gift we could get today would be a scheduled surgery date. We are still waiting to hear word from the docs on their decesion, but we are hopeful!!!! The hospital is packed to the rafters!!! There are no more rooms or beds available and we hear that they could be close to turning people away to other hospitals if they can. I hope that this doesn't change the outlook of the doctors concerning Connor.
I will post just as soon as we have more info today!!!
Lovebug Hugs,
Lori
I will post just as soon as we have more info today!!!
Lovebug Hugs,
Lori
Thursday, August 10, 2006
Decision will be made tomorrow!!!!
We should get word sometime before noon tomorrow if the surgeons are going to OK Little Bug for his surgery. We are praying so hard that they will see the necessity and move forward. I will post as soon as I find out tomorrow so that you will all know. Connor had an uneventful day today, which was nice. He has been off the c-pap for 7 1/2 hours and counting. They're going to see how long he can go without putting it back on, and this is the longest he has gone since we've been back in the hospital. It's hard to believe that just a week ago Connor was brewing up something inside that caused us to come back to CH last Friday. Wow, this week has flown by!!! I lost my sleeping room tonight so Connor and I are bunking in together. I'm hoping for at least a few hours of sleep!!! Randy called just moments ago and he is back in town. He will be coming up to the hospital some time tomorrow and we can't wait to see him. How I hope and pray we will be giving him the good news that Connor is scheduled for his surgery.
I'm off to try and get some sleep!
Lovebug Hugs,
Lori
I'm off to try and get some sleep!
Lovebug Hugs,
Lori
Wednesday, August 09, 2006
Short Update......
Today Connor has been in a greater need for the c-pap requirements than he did yesterday. There isn't really a reason that today would be any different than yesterday, but somehow he cannot keep his oxygen and breathing under control on his own. There weren't any procedures done today on Connor's behalf, only more talk with the doctors. It looks like they will present Connor to the surgeon's on Friday and we are praying that they will sense the urgency of the situation and take him in for his heart repair next week. I will stay posted on all the details.
Today I have been feeling the typical pregnancy pains. I took a short nap this afternoon hoping that would help the "puke feelings" to go away, but I was wrong, they are still with me. I'm off to have a peanut butter sandwich and then to bed. Connor is tucked away and sleeping sound at the moment. Randy is still in Germany, but should be heading home sometime tomorrow so he will be with us soon.
Once again, thanks for your prayers!!!
Lovebug Hugs,
Lori
Today I have been feeling the typical pregnancy pains. I took a short nap this afternoon hoping that would help the "puke feelings" to go away, but I was wrong, they are still with me. I'm off to have a peanut butter sandwich and then to bed. Connor is tucked away and sleeping sound at the moment. Randy is still in Germany, but should be heading home sometime tomorrow so he will be with us soon.
Once again, thanks for your prayers!!!
Lovebug Hugs,
Lori
Tuesday, August 08, 2006
Hovering.......Not such a bad thing!!!!
Last night when I posted, I have to admit, I was a little beyond frustration. The tone was definately different than in the past, but thankfully the Lord uses us even when we are at the end of ourselves. I have to share what happened last night right after posting. First of all, in the midst of typing the post I recieved a very timely phone call from our pastor and our prayer immediately put peace in my heart. It makes me think of the scripture in Psalms that says, "A word aptly spoken is like an apple of gold." The Lord answered my prayer to calm my anxious heart!!!
Second, after retiring to my sleeping quarters I took my bible and opened to Genesis chapter 1, the very beginning of the Bible. I have to admit, Genesis is not the typical place one would go for encouragement, but it seemed right at the moment. As I began reading the begining of the Creation account I came across verse 2 which read, "......And the Spirit of God was HOVERING over the face of the waters..." I couldn't believe what I had just read. As you will remember the title of last evenings post was HOVERING! I didn't even know that word was in the Bible. God is so faithful. As I continued reading through the first 4 chapters of Genesis I read how God created the land and the seas and the beasts of the field and the sun, moon and stars and man in his image. After each day of creation it said, "...and God saw that it was good and so ended the first, second, third day (etc)..." As I lay there in my dimly lit sleeping closet I wept as I realized the truth that God was revealing to me. Even as God has created the earth and all that is in it and said that it was good, so God is in the process of creating Connor and he sees that he is good. I feel that God allowed me to feel frustrated yesterday so that he could show me what a wonderous creation Little Bug is!!!! Thank you Lord for speaking to me and calming my heart.
Today was a much better day for Connor. He was calm and peaceful most of the day with only a few of his episodes. He was off the c-pap for almost 4 hours and in that time we snuggled and kissed the majority of the time. He had lots of coos and conversation for me and even a couple of smiles tickled his lips. For a brief moment, I saw my baby, my happy baby that I love so much!!
He went to the GI clinic for a barium enema and they found nothing wrong with his intestines, colon or rectum. Good news, yes. But, it doesn't answer the questions of why he is in so much abdominal pain. They are continuing to consult and look for answers. The doctors finally agreed together today that we must MOVE forward toward Little Bug's open heart surgery. It is going to be a high risk surgery and we may be in for quite a long haul, but it is a necessity. We will be finding out more in the next couple of days as to when the surgery will take place. Praise the Lord, he answered our prayers for movement. Thank you Lord!!!!
We also heard from Randy, and to make a long story short, he is actually headed home and should be here by Thursday of this week. Once again, Praise the Lord, God answered our prayers to bring Randy home to us!!!!
Well, I'm about ready to get booted off the computer so I better sign off before I loose all of this post. I will post more tomorrow. Thanks for your intercession and your prayers on our behalf.
Lovebug Hugs,
Lori
Second, after retiring to my sleeping quarters I took my bible and opened to Genesis chapter 1, the very beginning of the Bible. I have to admit, Genesis is not the typical place one would go for encouragement, but it seemed right at the moment. As I began reading the begining of the Creation account I came across verse 2 which read, "......And the Spirit of God was HOVERING over the face of the waters..." I couldn't believe what I had just read. As you will remember the title of last evenings post was HOVERING! I didn't even know that word was in the Bible. God is so faithful. As I continued reading through the first 4 chapters of Genesis I read how God created the land and the seas and the beasts of the field and the sun, moon and stars and man in his image. After each day of creation it said, "...and God saw that it was good and so ended the first, second, third day (etc)..." As I lay there in my dimly lit sleeping closet I wept as I realized the truth that God was revealing to me. Even as God has created the earth and all that is in it and said that it was good, so God is in the process of creating Connor and he sees that he is good. I feel that God allowed me to feel frustrated yesterday so that he could show me what a wonderous creation Little Bug is!!!! Thank you Lord for speaking to me and calming my heart.
Today was a much better day for Connor. He was calm and peaceful most of the day with only a few of his episodes. He was off the c-pap for almost 4 hours and in that time we snuggled and kissed the majority of the time. He had lots of coos and conversation for me and even a couple of smiles tickled his lips. For a brief moment, I saw my baby, my happy baby that I love so much!!
He went to the GI clinic for a barium enema and they found nothing wrong with his intestines, colon or rectum. Good news, yes. But, it doesn't answer the questions of why he is in so much abdominal pain. They are continuing to consult and look for answers. The doctors finally agreed together today that we must MOVE forward toward Little Bug's open heart surgery. It is going to be a high risk surgery and we may be in for quite a long haul, but it is a necessity. We will be finding out more in the next couple of days as to when the surgery will take place. Praise the Lord, he answered our prayers for movement. Thank you Lord!!!!
We also heard from Randy, and to make a long story short, he is actually headed home and should be here by Thursday of this week. Once again, Praise the Lord, God answered our prayers to bring Randy home to us!!!!
Well, I'm about ready to get booted off the computer so I better sign off before I loose all of this post. I will post more tomorrow. Thanks for your intercession and your prayers on our behalf.
Lovebug Hugs,
Lori
Monday, August 07, 2006
Hovering.........
Have you ever felt like a hovercraft? You know what I mean right? Its when you quickly ascend to a particular altitude and then you're stuck. You do not move up. You do not move down. You do not move to the right. You do not move to the left. You're standing still, suspended in space and time with only air to uphold you. This is exactly how I feel today, except it is not air holding me up. It is the safe and soft hands of God that are sustaining me. I would be lying if I said I wasn't frustrated today. I am!!!!! I am so tired of the same old discussions. The same old blather...... BLAH BLAH BLAH!!!!! I don't have the energy to tell Little Bugs story and history to one more doctor or specialist. We need movement, we don't need more talking. I'm tired of talking!!!!
Oh Lord, quiet this anxious heart and replace my worry with your confidence. I am weary and I am loosing sight of the goal that you have in store for Connor. I know you want to teach us to trust you more, but you are testing us in ways we could never have imagined. In my heart I know that You and You alone are God and You alone can quench this thirsty heart. Fill me Lord with your peace. Fill my soul with your overwhelming presence. Allow these eyes to "Look to the hills from whence cometh my help." I do trust you God. By faith I speak your word and your life over little Connor this night. Invade his sleep with your healing hand and renew his spirit. Renew the fight that is within him and let him be an amazement to everyone. Preform a miracle dear Lord so that we may give you the glory, the praise and the honor for your wonderous works. I resign my will Oh Lord. Do with this situation what you will and give our hearts grace and joy to face each new challenge. In your holy and blessed name, Amen!!
Lovebug Hugs,
Lori
Oh Lord, quiet this anxious heart and replace my worry with your confidence. I am weary and I am loosing sight of the goal that you have in store for Connor. I know you want to teach us to trust you more, but you are testing us in ways we could never have imagined. In my heart I know that You and You alone are God and You alone can quench this thirsty heart. Fill me Lord with your peace. Fill my soul with your overwhelming presence. Allow these eyes to "Look to the hills from whence cometh my help." I do trust you God. By faith I speak your word and your life over little Connor this night. Invade his sleep with your healing hand and renew his spirit. Renew the fight that is within him and let him be an amazement to everyone. Preform a miracle dear Lord so that we may give you the glory, the praise and the honor for your wonderous works. I resign my will Oh Lord. Do with this situation what you will and give our hearts grace and joy to face each new challenge. In your holy and blessed name, Amen!!
Lovebug Hugs,
Lori
Sunday, August 06, 2006
Sunday Evening Prayer....
Today has been a stable day for Little Bug. He struggled through the early morning hours but finally settled down after noon time and did fairly well until about 8pm. At that time he went into a significant downward spiral for about a half an hour and they brought in all the intibation supplies to put the ventulator back in. He did however pull out of it on his own and with the help of c-pap so they are holding off, for the moment, on intibation. His case will once again be presented at the cardiac round table discussion tomorrow morning, and I am hoping that they will finally make a decision about the timing of his heart repair surgery. It is my hope and prayer that they will take into consideration all of Connor's history and that they will see and understand the pattern that he is constantly going through. This cannot continue and he needs to have a strong heart to fight off all of the other challenges that are presented to him.
Oh Lord, please hear our prayers on Little Bug's behalf. Grant our desires to see his heart healthy and strong. Reach into his little body and heal him we pray!! Give us peace in the presence of all of this chaos and give us your wisdom to make decisions concerning Connor's care. We ask you to do what only you can do, and that is to heal our son. Allow him many long days on this earth to share of your wonders and of the miracles that he has witnessed. Spare him from further pain and restore him to us a whole little boy. We ask these things in your precious and holy name, Amen!
Lovebug Hugs,
Lori
Oh Lord, please hear our prayers on Little Bug's behalf. Grant our desires to see his heart healthy and strong. Reach into his little body and heal him we pray!! Give us peace in the presence of all of this chaos and give us your wisdom to make decisions concerning Connor's care. We ask you to do what only you can do, and that is to heal our son. Allow him many long days on this earth to share of your wonders and of the miracles that he has witnessed. Spare him from further pain and restore him to us a whole little boy. We ask these things in your precious and holy name, Amen!
Lovebug Hugs,
Lori
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