There really are not eloquent words for our experience today. The only word that comes to mind is, WHY? Why does Little Bug have to suffer? Why are the doctor's perplexed? Why do I feel like my mind is ready to explode with worry? Why can't we just go home? WHY? WHY? WHY?
I had hoped for a better day for Connor today, but it was not. He was supposed to go for his G-tube study today but it was cancelled because Connor was balistic and in an absolute frenzy the majority of the day. It was worse than yesterday and lasted longer as well. He had moments that were very seizure like, but once again they are not sure. They have now decided to give him round the clock sedation so that he doesn't tailspin into these episodes!! So much for cute little coos and crooked little smiles. Little Bug is going to take a long winter's nap (or should I say spring nap) until Monday when they can take him in for tests. They are hoping he responds to the sedation because they have to give it to him through his g-tube. He normally responds to sedation through his IV but all his IV lines are blown out and they have tried SOOOOOOOOOOOO hard to get a line in him and they have been unsuccessful. He has bruises all over his arms and legs from pokes and it makes me so sad to look at how he must be hurting.
My eyes are once again swollen from crying all day. Thanks Mom for being here with me for a few hours today. It was wonderful to have you hold my hand when I was hurting so badly for Connor. I will be attending baby Michaels memorial service tomorrow afternoon. Please pray for strength and grace for his family as they say goodbye to their sweet baby. Please also pray for our hospital buddy "Skylar". He has been through quite a road here and has gone on and off the ventulator numerous times. They just decided today to do a trach on him so that he can go home and heal. Please remember him and his sweet family in your prayers as well.
Lovebug Hugs,
Lori
Friday, May 12, 2006
Thursday, May 11, 2006
Walking Away.......Oh how it hurts.....
Oh my, what a day it has been. First the miraculous answer to our prayers. The visit to the OR today lended good news and bad news. The good news is that they DID NOT find Connor's lower airway to be floppy. Praise the Lord!!!!! They actually found it to be quite strong!!! For now we can put aside any thoughts of a Trach and move on to what could be the trouble. They did, however, see that Little Bug's upper airway and voice box area is EXTREMELY swollen and small. This could be due to the refluxing he did at the beginning of our medical journey or it could be that he is STILL refluxing even now. Tomorrow morning they will do a G-tube study to see if that is the case. So, all in all the news was positive from the Operating Room today!!
It is now 8pm and I had to walk away from Connor's room. He is going absolutely crazy with crying and pain and I cannot help him. I have cried my eyes out for him today. Everyone is perplexed. He has now spiked another fever, which could explain his crankiness, but they're not sure. They took X-ray's and took blood cultures so now we await results....ALWAYS WAITING!!!! I left him in the very loving hands of nurse Graham and she promises to call me if he doesn't eventually settle down. My nerves are frazzled and my body is weary so I am off to bed to get some rest. Oh how it hurts to walk away from your baby when he's struggling. Lord forgive me for not having the stamina to stay, but I must rest. Give my heart peace tonight and help Little Bug regain his strength. Please Lord, touch Connor in his body and heal him. We have faith and we believe. Please preform your work in him!!!
Thank you, dear ones, for all your love, prayers and support. I feel every prayer that is whispered on our behalf and I shout out, "Thank you Lord"!!
Goodnight & Lovebug Hugs,
Lori
It is now 8pm and I had to walk away from Connor's room. He is going absolutely crazy with crying and pain and I cannot help him. I have cried my eyes out for him today. Everyone is perplexed. He has now spiked another fever, which could explain his crankiness, but they're not sure. They took X-ray's and took blood cultures so now we await results....ALWAYS WAITING!!!! I left him in the very loving hands of nurse Graham and she promises to call me if he doesn't eventually settle down. My nerves are frazzled and my body is weary so I am off to bed to get some rest. Oh how it hurts to walk away from your baby when he's struggling. Lord forgive me for not having the stamina to stay, but I must rest. Give my heart peace tonight and help Little Bug regain his strength. Please Lord, touch Connor in his body and heal him. We have faith and we believe. Please preform your work in him!!!
Thank you, dear ones, for all your love, prayers and support. I feel every prayer that is whispered on our behalf and I shout out, "Thank you Lord"!!
Goodnight & Lovebug Hugs,
Lori
Waiting for news.....
Connor just went into the OR at 3:45pm. They were running a couple of hours behind so they just came and got him moments ago. It has been a difficult afternoon. About 12:30pm Connor started flipping out and I mean really flipping out. He was completely inconsolible and beside himself. For 3 hours it remained this way. They couldn't give him anything because of his pending trip to the OR. He had all the doctors in looking at him and just about all of them scratching their heads of what could be the trouble. I was in tears the whole time and my gutt tells me that Little Bug is hurting and he is in pain. He isn't "just fussy". He is struggling somewhere inside of him. I am waiting now for word from the OR on how the Bronchoscopy went. Once he returns they have scheduled him for more blood cultures, X-rays and the like to see what has triggered todays events.
Please Dear Lord, let the docs find something, anything that will help them make Little Bug feel better. I feel pressed on every side, but even still, I trust you Lord. Reach down even now and touch our son!!!!
Lovebug Hugs,
Lori
Please Dear Lord, let the docs find something, anything that will help them make Little Bug feel better. I feel pressed on every side, but even still, I trust you Lord. Reach down even now and touch our son!!!!
Lovebug Hugs,
Lori
Bronchoscopy Today!!!!
Today at 1:30pm I will send Connor into the operating room once again. He will have his bronchoscopy study at 1:30pm. Please pray that they would find a sturdy airway and no evidence of obstruction. We so desparately want to spare Connor of having a Trach.
Yesterday morning was great for Connor. He was snuggled by our sweet friends and honorary aunties, Shawn and Racquel. Thanks for your visit ladies, you were joy to my soul. After that, Connor just didn't seem to be acting like himself. A couple of hours later he worked himself up into quite a frenzy. Apparently his tummy was really bothering him because he threw up like there was no tomorrow. Remember, he's not supposed to be able to do that. When the doctor came in to discuss it, she said we need to do a G-tube study to see if his Nissen procedure is still working. Aaaauuuugggghhhhh!!!!!!!!!!!!!!!!!!!!!!! What more????????????
Earlier in the day the nutritionalist and dietician came and talked to me about Connor's growth, or should I say lack there of. They did a study on his poop last week (sorry for graphics....) and concluded that he's not obsorbing the good stuff, the fats....he's only obsorbing the fortifier of carbs that they put into the breatmilk. They decided to take him off breastmilk until Friday and just give him a pre digested formula to see if that works. It's all such a guessing game with Little Bug. It was scarry to hear the words, "Connor is failing to thrive!" We've been here 73 days and he's only gained 1 pound 14 ounces. That's just under 2 pounds in over two months. Certainly this is not acceptable. After they took him off breastmilk yesterday, it wasn't but about 4 hours and he was pooping up a storm and he developed a strange rash on his little bum. Now they concluded that it is from the formula, so back to breastmilk we go. What a merry-go-round.
We also enjoyed our visit with Auntie Maureen and cousin Derek yesterday afternoon. Connor was wiped out, but he enjoyed the snuggles. Nurse Cheley was gentle as always and then we had the sweet loving care of another one of our favorites last night. Nurse Genevieve is like an angel. She touches Connor with such love and sweetness, it's actually precious to step back and watch. We will miss her as she is going on a long trip to Ireland. Thanks for being a blessing to us Genevieve. I hope we're not here when you get back, but just in case we are, we can't wait to hear about all your adventures abroad.
Late last night, Connor had another IV problem. His leg IV blew out so they had to do the multiple poke method of finding a new vein and finally after midnight, they got one in his head. He conked out and was completely exhausted after about 1am. Whew, what a day.
Please pray today at 1:30 as Connor goes to the OR. We miss Daddy today as this is the first time I have to send Little Bug into the OR by myself. I will place our hearts underneath his blankets and I know that Herman is already rallying the angel troops to accompany Little Bug into the big white room. I will post later this afternoon with results, and I hope to exclaim the miracle working hand of God on Little Bugs airways.
Lovebug Hugs,
Lori
Yesterday morning was great for Connor. He was snuggled by our sweet friends and honorary aunties, Shawn and Racquel. Thanks for your visit ladies, you were joy to my soul. After that, Connor just didn't seem to be acting like himself. A couple of hours later he worked himself up into quite a frenzy. Apparently his tummy was really bothering him because he threw up like there was no tomorrow. Remember, he's not supposed to be able to do that. When the doctor came in to discuss it, she said we need to do a G-tube study to see if his Nissen procedure is still working. Aaaauuuugggghhhhh!!!!!!!!!!!!!!!!!!!!!!! What more????????????
Earlier in the day the nutritionalist and dietician came and talked to me about Connor's growth, or should I say lack there of. They did a study on his poop last week (sorry for graphics....) and concluded that he's not obsorbing the good stuff, the fats....he's only obsorbing the fortifier of carbs that they put into the breatmilk. They decided to take him off breastmilk until Friday and just give him a pre digested formula to see if that works. It's all such a guessing game with Little Bug. It was scarry to hear the words, "Connor is failing to thrive!" We've been here 73 days and he's only gained 1 pound 14 ounces. That's just under 2 pounds in over two months. Certainly this is not acceptable. After they took him off breastmilk yesterday, it wasn't but about 4 hours and he was pooping up a storm and he developed a strange rash on his little bum. Now they concluded that it is from the formula, so back to breastmilk we go. What a merry-go-round.
We also enjoyed our visit with Auntie Maureen and cousin Derek yesterday afternoon. Connor was wiped out, but he enjoyed the snuggles. Nurse Cheley was gentle as always and then we had the sweet loving care of another one of our favorites last night. Nurse Genevieve is like an angel. She touches Connor with such love and sweetness, it's actually precious to step back and watch. We will miss her as she is going on a long trip to Ireland. Thanks for being a blessing to us Genevieve. I hope we're not here when you get back, but just in case we are, we can't wait to hear about all your adventures abroad.
Late last night, Connor had another IV problem. His leg IV blew out so they had to do the multiple poke method of finding a new vein and finally after midnight, they got one in his head. He conked out and was completely exhausted after about 1am. Whew, what a day.
Please pray today at 1:30 as Connor goes to the OR. We miss Daddy today as this is the first time I have to send Little Bug into the OR by myself. I will place our hearts underneath his blankets and I know that Herman is already rallying the angel troops to accompany Little Bug into the big white room. I will post later this afternoon with results, and I hope to exclaim the miracle working hand of God on Little Bugs airways.
Lovebug Hugs,
Lori
Tuesday, May 09, 2006
Reflections......
Today has been a quiet day of reflection for me as I recount the many days of our journey here. We've made friends with families and nurses and we've also said farwell to friends that get to go home and others that the Lord takes to Heaven. We celebrate victories with eachother and we grieve losses together as well. I look at Little Bug laying in his bed and the last 71 days seem to flood by in slow motion. Wow, what a road we have traveled. We've circled around a lot without making progress. We've slipped backwards. We've leaped forward. But we're not there yet. We have more ground to cover, more mountains to climb, more battles to fight!!!
I had a good heart to heart conversation with Connor's doctor today about the upcoming Bronchial Scope Study. The bottom line is this. If the study shows that Connor has a floppy airway, the only thing they can do is keep him on the c-pap to create that positive airway pressure. The catcher is this, you can't go home with a c-pap machine for infants and floppy airways are normally grown out of by 18-24 months. Yikes, I thought, we have to stay in the hospital for 2 years!!!!!!!!!!!!!!!!! No, that's not an option. The doctor explained that if this is the case then we will have to discuss a Tracheotomy. My heart is sinking just to think about that. At this point, this is the worst case senerio and we shouldn't jump to conclusions. But, the reality is that this very well may be the case. He already has a floppy upper airway and that is why he had the Epiglodyplasty surgery last month. The probability for the lower airway to be floppy as well is high, but not confirmed. So here's the deal.......We need to target this area in our prayers. We need to ask of the Lord what only He can do.....Heal Connor's airway, lungs and breathing patterns. As a mother I want to see Connor spared from yet another procedure, surgery and the like. I want him to develop and explore normally and not be impaired by outward devices. I am trusting in the Lord to preform a miracle and when they do this next study that he would pass with flying colors. God can heal Connor, I believe this!!! At this point, I am not sure of the day that they are planning to do the study, but I will keep you all posted.
Little Bug, I know you are a stong boy and you are such a fighter. We are proud of you and we know that eventually you will overcome all of these obstacles. We believe in you and your abilities. Please show those doctors that God is healing you from the inside out and let them see that your airways are strong!!!! Your daddy and I are praying for you constantly and we believe in you!!!!! Be strong and courageous!!!
Lovebug Hugs,
Lori
I had a good heart to heart conversation with Connor's doctor today about the upcoming Bronchial Scope Study. The bottom line is this. If the study shows that Connor has a floppy airway, the only thing they can do is keep him on the c-pap to create that positive airway pressure. The catcher is this, you can't go home with a c-pap machine for infants and floppy airways are normally grown out of by 18-24 months. Yikes, I thought, we have to stay in the hospital for 2 years!!!!!!!!!!!!!!!!! No, that's not an option. The doctor explained that if this is the case then we will have to discuss a Tracheotomy. My heart is sinking just to think about that. At this point, this is the worst case senerio and we shouldn't jump to conclusions. But, the reality is that this very well may be the case. He already has a floppy upper airway and that is why he had the Epiglodyplasty surgery last month. The probability for the lower airway to be floppy as well is high, but not confirmed. So here's the deal.......We need to target this area in our prayers. We need to ask of the Lord what only He can do.....Heal Connor's airway, lungs and breathing patterns. As a mother I want to see Connor spared from yet another procedure, surgery and the like. I want him to develop and explore normally and not be impaired by outward devices. I am trusting in the Lord to preform a miracle and when they do this next study that he would pass with flying colors. God can heal Connor, I believe this!!! At this point, I am not sure of the day that they are planning to do the study, but I will keep you all posted.
Little Bug, I know you are a stong boy and you are such a fighter. We are proud of you and we know that eventually you will overcome all of these obstacles. We believe in you and your abilities. Please show those doctors that God is healing you from the inside out and let them see that your airways are strong!!!! Your daddy and I are praying for you constantly and we believe in you!!!!! Be strong and courageous!!!
Lovebug Hugs,
Lori
Kissing Heaven..........
Have you ever kissed heaven? Well, last night I had the great privilege of doing just that. Our precious baby Michael, affectionately called Miracle Michael and Michael Michael Motorcycle went into the sweet arms of our Lord last night. He is the most amazing baby and he fought the good fight so bravely and with the most courage. His parents are the sweetest people and they have become lifelong friends. They lovingly allowed me the privilege of saying goodbye to baby Michael late last night. I realized when my lips touched his precious little head that my lips had just kissed a piece of heaven. With tears running down my face I had the wonderful revelation that when the Lord entrusts us with children that he is really entrusting us with a part of himself, a part of heaven. When we love our children, we are in turn, loving him and giving him honor for this most wonderous creation, our children!! Michael and his parents have taught me about what it means to love and to sacrifice. They have released their most priceless gift of love back to God. May they know the precious comfort of our Heavenly Father in the coming days and may they reach back to Heaven often for glimpses of joy in the memories of baby Michael.
When I left the room last night there was a quiet comfort and peace that surrounded the hallways. I briefly slipped into Connor's room to squeeze his little hand and tell him that I loved him and that Michael was up in Heaven looking out over him. When I touched Little Bug, I realized as I had moments earlier with Michael, that I was once again touching and kissing Heaven. In my child I see the angels, I see the face of our Lord and I see the glory and joy of eternity. What splendid confirmation it is for me to look at Little Bug and be reminded that we are given blessings and bundles of love for what may be only mere moments for some and for others it may be lifetimes, but yet all of them are slices of the Lord's love and pieces of Heaven.
Rest now sweet baby Michael and feel your healing. Oh Lord, be with the Whitney's today and always and comfort them with your love. Allow them peace and understanding for the days ahead and impress upon their hearts the tenderness of your care for them. May they know how deeply they and their son have touched those who have loved and cared for them. Amen!!
Lovebug Hugs,
Lori
When I left the room last night there was a quiet comfort and peace that surrounded the hallways. I briefly slipped into Connor's room to squeeze his little hand and tell him that I loved him and that Michael was up in Heaven looking out over him. When I touched Little Bug, I realized as I had moments earlier with Michael, that I was once again touching and kissing Heaven. In my child I see the angels, I see the face of our Lord and I see the glory and joy of eternity. What splendid confirmation it is for me to look at Little Bug and be reminded that we are given blessings and bundles of love for what may be only mere moments for some and for others it may be lifetimes, but yet all of them are slices of the Lord's love and pieces of Heaven.
Rest now sweet baby Michael and feel your healing. Oh Lord, be with the Whitney's today and always and comfort them with your love. Allow them peace and understanding for the days ahead and impress upon their hearts the tenderness of your care for them. May they know how deeply they and their son have touched those who have loved and cared for them. Amen!!
Lovebug Hugs,
Lori
Monday, May 08, 2006
Another day of the climb......
We are climbing once again today. Connor slipped a little bit today and spiked a fever. Guess what that meant??? Yup, more blood. This poor guy gets poked so much. After 7 attempts they finally got blood and put a new IV line in. We're still hoping he can get off the antibiotic so we can say goodbye to iv lines for a while, but we are still waiting on that one. Early this evening I met with more of the pulmonology specialists and they feel that Connor's X-ray did not exhibit any change since being on the steroids. They won't discontinue the steroids yet though, because they want to consult with one more doc. The docs I spoke with today are concerned about what's called Tracheal Malachia (sp??). Basically that means a floppy windpipe. They are requesting permission from Connor's main docs to do a Bronchial Scope where they would view his airway and windpipe with a fiberoptic scope. This would hopefully be able to tell them if Connor has a tendency to have his windpipe collapse. This could possibly explain the reason for his "episodes" when he gasps for air and his respitory rate goes sky high. We should know later this week if that is the case. We remain in ICU for the time being because the rooms on the floor cannot accomodate using the c-pap machine for infants. We are happy to be in the ICU. Everyone knows us there and they love Connor.
We had to say goodbye to daddy again this morning as he leaves for "unknown territory" early tomorrow morning. It was hard for him to leave today as we had such a great weekend with Connor. It's so sweet to see how Randy worries about us when he knows he's going to be gone. Thanks honey for your love and support. Thank you especially for working hard to defend our freedom and our country. You take your job so seriously and for that we are so grateful. I promise to keep our little bug safe and sound while you are away and we will try our hardest to continue on the path of healing. We miss you terribly already and we sense your absence in our hearts. But, we will pray for your safe and quick return to us, OK. I love you my dear. Thanks for being the greatest husband a girl could ever ask for.
I know it was great for all of you to hear our positive reports over the weekend. Please don't stop praying for Little Bug. He isn't out of the woods yet, and it seems we are always just a corner's turn away from slipping backwards. Connor needs to get stronger and healthier and our prayers are going to support his progress!!!! By faith we believe he will be up and feeling 100% better soon!!!
Lovebug Hugs,
Lori
We had to say goodbye to daddy again this morning as he leaves for "unknown territory" early tomorrow morning. It was hard for him to leave today as we had such a great weekend with Connor. It's so sweet to see how Randy worries about us when he knows he's going to be gone. Thanks honey for your love and support. Thank you especially for working hard to defend our freedom and our country. You take your job so seriously and for that we are so grateful. I promise to keep our little bug safe and sound while you are away and we will try our hardest to continue on the path of healing. We miss you terribly already and we sense your absence in our hearts. But, we will pray for your safe and quick return to us, OK. I love you my dear. Thanks for being the greatest husband a girl could ever ask for.
I know it was great for all of you to hear our positive reports over the weekend. Please don't stop praying for Little Bug. He isn't out of the woods yet, and it seems we are always just a corner's turn away from slipping backwards. Connor needs to get stronger and healthier and our prayers are going to support his progress!!!! By faith we believe he will be up and feeling 100% better soon!!!
Lovebug Hugs,
Lori
Sunday, May 07, 2006
Unfortunate moment for dad....
Ok, here's some Sunday evening humor for you....This morning as Randy was getting ready in the 5th floor family bathroom he had an unfortunate event. He had just showered and as most men do, he was standing at the sink, stark naked shaving. I know, I know, too much information, but "bare" (pardon the pun) with me. Just about 1/2 way through his shaving job, the door to the "public" bathroom swung open and to his surprise, here is another parent (a mom, whom I'm sure was horrified) wanting to use the showers. There were shreaks of embarrassment on both parts and the door slammed shut. Randy's not quite sure who the unknown mother was, but he's hoping they don't meet face to face, or any other way again. Boy oh boy, you really have to keep your humor around here, but I think Randy's taking this a bit too far.....HA HA HA....Hee Hee Hee!!!!!!!
Lovebug Hugs,
Lori and one embarrassed husband (if you know what I mean)!!!!
PS ~ Just in case you're wondering, Randy did give his permission to post his unfortunate event!!!
Lovebug Hugs,
Lori and one embarrassed husband (if you know what I mean)!!!!
PS ~ Just in case you're wondering, Randy did give his permission to post his unfortunate event!!!
Splendid Weekend For Little Bug!!!!
It has been an absolutely splendid weekend for our precious little bug!!!! He is looking so good and everyone is saying that we are getting really close to going home!!!!! Wow, I can't even believe I am typing those words. Oh Lord, Let it be so!!!!!
Here's an update on how quickly things have changed. The docs have decided to discontinue the 6 week round of antibiotics that they called for 2 weeks ago. He will probably stop this particular antibiotic sometime early this week and then he will have to prove himself by not spiking a fever. If he can do that, then they believe it will be fine to take him off this medication. I mentioned the other day that he did have positive blood cultures, but that was actually good news because now they actually know what they are treating, and it is working. He is feeling sooooooooooooooo much better. He got a blood transfusion on Friday and he has a lot of color back in his skin. He has been on and off the c-pap, but only during naptime and bedtime. There is a possibility that we could even go home with a c-pap machine if he really needs it. They have stopped the Morphine and Ativan and they are only giving it to him as needed and he hasn't needed it in 2 days...Praise the Lord!!!
Today he was doing so well that when I walked in this morning Connor was nowhere to be found. I caught our favorite Nurse Amy walking around the unit with Little Bug in her arms. She was just strolling along without a care in the world. Connor wasn't hooked up to anything. He was cord and wire free and happy as a little bug could be. Randy and I also got to take a proud walk around the unit and show him off. And proud we were. I think we walked taller and straighter than we have walked in months. It was just so much fun to see Connor having such a great couple of days.
I'm sure that this will be a pretty truth-telling week for Little Bug. If he continues on this fabulous run of good days, then we are pretty sure that we could look towards going home in a week to a week and a half. Yes, that's right, I said HOME!!!!! Please continue to pray that Connor remains on this road of healing and that the docs will feel that he is strong enough to make the transition home!!! As always, I will keep you posted and let you know of his progress!!! God is preforming daily miracles and we sense the mighty, mighty hand of God waving his love and protection over us. Thank you Lord for your continued healing touch!!!!
Lovebug Hugs,
Lori
PS ~ By the way we hit two major milestones today......1st off, Connor made it to 9 pounds!!!! Yippie....he's finally starting to grow!!!! Secondly, sometime around 11:15-11:30 this morning someone clicked onto our site and we reached 10,000 visitors!!!! Wow, Little Bug is touching the world!!!!! May the world see Jesus shining through this little bugs life and may they be changed for all eternity!!!!
Here's an update on how quickly things have changed. The docs have decided to discontinue the 6 week round of antibiotics that they called for 2 weeks ago. He will probably stop this particular antibiotic sometime early this week and then he will have to prove himself by not spiking a fever. If he can do that, then they believe it will be fine to take him off this medication. I mentioned the other day that he did have positive blood cultures, but that was actually good news because now they actually know what they are treating, and it is working. He is feeling sooooooooooooooo much better. He got a blood transfusion on Friday and he has a lot of color back in his skin. He has been on and off the c-pap, but only during naptime and bedtime. There is a possibility that we could even go home with a c-pap machine if he really needs it. They have stopped the Morphine and Ativan and they are only giving it to him as needed and he hasn't needed it in 2 days...Praise the Lord!!!
Today he was doing so well that when I walked in this morning Connor was nowhere to be found. I caught our favorite Nurse Amy walking around the unit with Little Bug in her arms. She was just strolling along without a care in the world. Connor wasn't hooked up to anything. He was cord and wire free and happy as a little bug could be. Randy and I also got to take a proud walk around the unit and show him off. And proud we were. I think we walked taller and straighter than we have walked in months. It was just so much fun to see Connor having such a great couple of days.
I'm sure that this will be a pretty truth-telling week for Little Bug. If he continues on this fabulous run of good days, then we are pretty sure that we could look towards going home in a week to a week and a half. Yes, that's right, I said HOME!!!!! Please continue to pray that Connor remains on this road of healing and that the docs will feel that he is strong enough to make the transition home!!! As always, I will keep you posted and let you know of his progress!!! God is preforming daily miracles and we sense the mighty, mighty hand of God waving his love and protection over us. Thank you Lord for your continued healing touch!!!!
Lovebug Hugs,
Lori
PS ~ By the way we hit two major milestones today......1st off, Connor made it to 9 pounds!!!! Yippie....he's finally starting to grow!!!! Secondly, sometime around 11:15-11:30 this morning someone clicked onto our site and we reached 10,000 visitors!!!! Wow, Little Bug is touching the world!!!!! May the world see Jesus shining through this little bugs life and may they be changed for all eternity!!!!
Bathtime on Sunday Afternoon...
Scrub-a-dub-dub, Little Bug's in the tub!!!
C'mon Connor......splish, splash, enjoy your bath!!!!!
Hey, I said enjoy your bath didn't I!!! How many hands does it take to wash a little bug???
Daddy loves helping Connor in his bathtub........but I'm not sure if Grandma approves????? Just kidding Mom, but that is a funny look on your face!!! Hee Hee
Aaaaawwwwwhhhhhh.....Warm & Cozy in my new bug robe!!!
Aaaaahhhhhhhh.........
This is my favorite picture of daddy with Connor. Oh how precious is the sight of my 2 favorite guys!!!!
Mama and little bug after bathtime......just playin' around!!!!
Sunday after bathtime with Grandma & Grandpa M., Uncle Larry & Aunt Maureen and Daddy & Mama of course!! Oh, I forgot, Little Bug's here too!!!
Aaahhhhhh, Look at that......3 generations!!!!!
Oh so sleepy after my bath.....Little Bug's almost asleep, but Mama and Daddy keep taking pictures.....UUUUUUGGGGHHHH!!!!! What's a cute Little Bug to do????? Suggestions anyone???
Connor and Daddy having a little guy time telling stories about the Big Red Barn!!!
Our famous Nurse Amy.....How we love you Amy!!! Thanks for all your TLC with Little Bug!!!
Connor's nighttime med supply!!!! YIKES!!!!!!!!!!!!!!!
Ok guys, you call me "Little Bug" and I think that's great, but was it necessary to give me a real antenna???? Oh, that's not an antenna, it's my new IV line.....What more are they going to require of me???
Son, here's the deal...Daddy has to leave on a trip on Tuesday so it's your responsibility to get better so Mama can take you home. When I get back I expect to see you playing at our house, OK??
Daddy, Mama & "Sleepy Bug"
More Pics.....
Saturday's visit with Uncle Randy, Karla, Corey & Megan
2nd Cousin Corey with girlfriend, Megan. We loved seeing you guys. Thanks for coming to visit us. Little Bug just loved being snuggled in your arms and he hopes to see you again real soon. Hope you had fun on your short visit from California. Hey, when you get back down there you'll have to blow some warm air up to us, OK!!!!
Mama is so happy that Little Bug is doing so well.
Auntie Teresa, Grandma R. with Mama and Connor last Thursday. What a fun visit and lunch we had.....thanks guys!!!!
Mama and Connor having a kissing moment!!!! I just love makin' out with that little bug!!!! HA
Friday, May 05, 2006
Sleepy Bug.....
Happy Cinco de Mayo!!!!! I have always loved this day as it is a good excuse to make a great mexican fiesta for dinner. Not the case this year. Randy and I did enjoy a good taco salad for lunch in the cafeteria though, so all was not lost.
Connor was Mr. Sleepy Bug today. They told us that one of the initial side effects of his new anti-seizure medication would be sleepiness. I guess they were right!! He slept most of the day today and he was on the c-pap the majority of the time as well. For some reason he couldn't keep his oxygen levels up where they need to be on his own, so they felt it best to go back to the c-pap for the time being. He had one episode this morning and the docs decided to start giving him small, scheduled doses of Ativan to try to stay on top of these outbursts of pain. Thankfully we have gotten the docs to admit they believe it's pain. So tomorrow is another day and we will hope for increased progress for Little Bug.
Daddy went back home today to mow the lawn and get the house in order. He will leave again on Tuesday for his next "stage" in sandland with his squadron out at McChord AFB. We always hate to see him go, but he is so faithful to be available for trips that he needs to make for his squadron. Randy is such a hard worker and we are so blessed that he is taking such good care of everything while Connor and I are not able to be home. Thanks honey for being such an excellent team player. You and Abbey have fun tonight at home and know that we miss you and love you!!!! Hey, by the way we also want to say thank you to our wonderful neighbors and family that have stepped up and agreed to help out with Abbey while we are here at Children's and while Randy is gone on his trips. Thanks so much for lessening this load for us right now. We owe you all a big thank you. And hey, how 'bout this, let's do a big cook out when we all get home to say thanks for watching Abbey!!!! That's a great idea...Hhhhhmmmm, I can already taste the burgers and dogs off the grill!!!
Wasn't it a beautiful day today?? Grandpa and Grandma M. came for an afternoon visit and it was so nice to have a visit and watch the wind blowing through the trees outside of Connor's window. After they left, I went for a short drive down to Matthew's Beach. I walked around for a while and took in the fresh, clean air and took advantage of a warm evening. How I prayed for Connor durning that walk and asked the Lord to give us another warm day soon that Randy & I could stroll together with Connor in our arms. It is always a reflective time for me when I get to be outdoors. Don't you ever wonder what it must have been like to be present at the moment of creation when God was creating plants, trees, animals, bugs, landscapes and so on. We have the most creative, amazing Heavenly Father. He knew from the beginning of time that His people would need beauty to surround them and that that very beauty would bring them closer to Him. I just think that's delightful that God thought of us in that way and had us in the palm of His hand from the very beginning of the world. Although my mind is skewed with doubts and fears at the current moment regarding Connor and his future, I know that the Lord of all creation sees me, and holds me and provides for my every need. Thank you Lord for your beautiful, spectacular love for me. Thank you for showering me with your daily grace and mercy. How very lost I would be without your guiding hand and loving touch. The wonder of your love is amazing and I am forever changed because of the way you care for me. Thank you for holding Randy and I and Little Bug close to your heart. Cradle us in your grip this evening I pray and give us new strength when we wake up tomorrow.
Goodnight and Lovebug Hugs,
Lori
Connor was Mr. Sleepy Bug today. They told us that one of the initial side effects of his new anti-seizure medication would be sleepiness. I guess they were right!! He slept most of the day today and he was on the c-pap the majority of the time as well. For some reason he couldn't keep his oxygen levels up where they need to be on his own, so they felt it best to go back to the c-pap for the time being. He had one episode this morning and the docs decided to start giving him small, scheduled doses of Ativan to try to stay on top of these outbursts of pain. Thankfully we have gotten the docs to admit they believe it's pain. So tomorrow is another day and we will hope for increased progress for Little Bug.
Daddy went back home today to mow the lawn and get the house in order. He will leave again on Tuesday for his next "stage" in sandland with his squadron out at McChord AFB. We always hate to see him go, but he is so faithful to be available for trips that he needs to make for his squadron. Randy is such a hard worker and we are so blessed that he is taking such good care of everything while Connor and I are not able to be home. Thanks honey for being such an excellent team player. You and Abbey have fun tonight at home and know that we miss you and love you!!!! Hey, by the way we also want to say thank you to our wonderful neighbors and family that have stepped up and agreed to help out with Abbey while we are here at Children's and while Randy is gone on his trips. Thanks so much for lessening this load for us right now. We owe you all a big thank you. And hey, how 'bout this, let's do a big cook out when we all get home to say thanks for watching Abbey!!!! That's a great idea...Hhhhhmmmm, I can already taste the burgers and dogs off the grill!!!
Wasn't it a beautiful day today?? Grandpa and Grandma M. came for an afternoon visit and it was so nice to have a visit and watch the wind blowing through the trees outside of Connor's window. After they left, I went for a short drive down to Matthew's Beach. I walked around for a while and took in the fresh, clean air and took advantage of a warm evening. How I prayed for Connor durning that walk and asked the Lord to give us another warm day soon that Randy & I could stroll together with Connor in our arms. It is always a reflective time for me when I get to be outdoors. Don't you ever wonder what it must have been like to be present at the moment of creation when God was creating plants, trees, animals, bugs, landscapes and so on. We have the most creative, amazing Heavenly Father. He knew from the beginning of time that His people would need beauty to surround them and that that very beauty would bring them closer to Him. I just think that's delightful that God thought of us in that way and had us in the palm of His hand from the very beginning of the world. Although my mind is skewed with doubts and fears at the current moment regarding Connor and his future, I know that the Lord of all creation sees me, and holds me and provides for my every need. Thank you Lord for your beautiful, spectacular love for me. Thank you for showering me with your daily grace and mercy. How very lost I would be without your guiding hand and loving touch. The wonder of your love is amazing and I am forever changed because of the way you care for me. Thank you for holding Randy and I and Little Bug close to your heart. Cradle us in your grip this evening I pray and give us new strength when we wake up tomorrow.
Goodnight and Lovebug Hugs,
Lori
Thursday, May 04, 2006
Mama's Intuition Wins!!!!!
This morning started out with the news from the docs that, "Connor looks great....we're taking his central line out and we're sending him to the floor today!" When I called down to the room and Randy gave me that news, my initial reaction was....WHAT?????????????? I had a significant gutt feeling that today was not the day to be moving Connor. I rushed to get dressed and get down to his room to speak with the "team" about their decision. I told them that I didn't feel good about the decision and that Connor needed to prove himself for a longer period of time in our estimation. The docs re-evaluated and said they would spend one more day watching him. Sure enough after a great morning and snuggling with Auntie Teresa and Grandma R., Little Bug went balistic!!! He freaked out for about 3 hours and after 2 doses of Morphine and Ativan he finally started to mellow, but only for short periods of time. His temp shot up to over 103 and they had to do the routine blood draws. This became difficult because they had removed his blood draw IV line earlier in the day, so he got multiple pokes in the arm and head. I think we scared Grandma R. right out of the room. Little bugs heart rate escalated to 202. His respirations went sky high as well and he ended up back on c-pap. Just now about 8:30 his temp is coming down and his numbers are looking better. Whew.....what an afternoon. When the docs came in they said, "Boy, I'm glad we didn't send him to the floor today!" I guess Mom's really do know what's best. Even Randy agreed that this was the best decision.
We didn't find out anything new today regarding the seizures. They hope that the new medication they started him on will stop the seizures. We didn't see any evidence of them today so we are grateful that the meds are working on his behalf.
This afternoon took a lot out of Connor and he looks wiped out. If there is a consolation to be seen in any of this, it would be nurse Amy!!!! Oh my how we love nurse Amy. We occasionally "catch" her kissing on Little Bug and loving on him in the most adoring ways. When she touches him she touches him with love and care and skill all at the same time. If we could hire her to be our full time nurse we would!!!! Go nurse Amy!!! She agreed with our concerns for Connor that his belly seems to be hurting him. Together we discussed that maybe he's getting too many calories in efforts to fatten him up and maybe it's causing him distress. We will be re-evaluating this very subject with the dietician tomorrow. At the moment his feeds have been stopped and he is getting IV fluids so that he doesn't get dehydrated.
I forgot to mention in yesterday's blog that they moved us again. Yep, that's right. We made move number 12 yesterday after Connor's EEG. I think we must be on the "stay in every room plan" here at Children's. It's actually becoming a bit of a joke around here that we need to wear roller skates because you never know when were moving next. I guess we are learning flexibility in more ways than one.
Yesterday was also a particularly hard day because the Lord saw fit to call another sweet baby into his loving care in Heaven. Little Jackson Stone passed away yesterday afternoon and our hearts greive with Paul and Tiffani, his parents, as they find some way to say goodbye to their precious son. Please pray for this dear sweet family in their loss. Baby Michael is also still fighting and his parents are such troopers. They need continued strength to make decesions and plans for their little miracle as well. How we all need a special touch from our Lord and grace to make it through each moment of every day. Your continued prayers on our behalf are upholding us and lifting us up daily. We feel strength because we know you are praying. Thank you for being the army of God on our behalf.
Goodnight and Lovebug Hugs,
Randy & Lori and Little Bug
We didn't find out anything new today regarding the seizures. They hope that the new medication they started him on will stop the seizures. We didn't see any evidence of them today so we are grateful that the meds are working on his behalf.
This afternoon took a lot out of Connor and he looks wiped out. If there is a consolation to be seen in any of this, it would be nurse Amy!!!! Oh my how we love nurse Amy. We occasionally "catch" her kissing on Little Bug and loving on him in the most adoring ways. When she touches him she touches him with love and care and skill all at the same time. If we could hire her to be our full time nurse we would!!!! Go nurse Amy!!! She agreed with our concerns for Connor that his belly seems to be hurting him. Together we discussed that maybe he's getting too many calories in efforts to fatten him up and maybe it's causing him distress. We will be re-evaluating this very subject with the dietician tomorrow. At the moment his feeds have been stopped and he is getting IV fluids so that he doesn't get dehydrated.
I forgot to mention in yesterday's blog that they moved us again. Yep, that's right. We made move number 12 yesterday after Connor's EEG. I think we must be on the "stay in every room plan" here at Children's. It's actually becoming a bit of a joke around here that we need to wear roller skates because you never know when were moving next. I guess we are learning flexibility in more ways than one.
Yesterday was also a particularly hard day because the Lord saw fit to call another sweet baby into his loving care in Heaven. Little Jackson Stone passed away yesterday afternoon and our hearts greive with Paul and Tiffani, his parents, as they find some way to say goodbye to their precious son. Please pray for this dear sweet family in their loss. Baby Michael is also still fighting and his parents are such troopers. They need continued strength to make decesions and plans for their little miracle as well. How we all need a special touch from our Lord and grace to make it through each moment of every day. Your continued prayers on our behalf are upholding us and lifting us up daily. We feel strength because we know you are praying. Thank you for being the army of God on our behalf.
Goodnight and Lovebug Hugs,
Randy & Lori and Little Bug
Wednesday, May 03, 2006
For Heaven's Sake, What's Next??
Today came and went with news we did not want to hear. The neurologist confirmed that indeed Connor has some abnormal brain wave activity at the top of his brain in the area called the Vertex. It is probable that this abnormality could cause seizures, but it is not confirmed. We were crushed with this news today as we had so hoped that they would find nothing wrong in Little Bugs brain. They said that the probability of brain damage from these seizures or seizure activity is not likely (Praise the Lord!). They are putting him on another new medication to stop the seizures until he undergoes his open heart surgery. After that time they will try to wean him off the medication and see if the seizures return. If they do, he will be treated with medication, and if they do not return then it is likely that they were not recurrent and they just happened as an isolated event. We will never know the cause of this nor will we know when they started. All we do know is that Little Bug needs our prayers so that he can be free from this seizure activity and be free from another medication. I will try to post more info tomorrow about the progress we are making in other areas. Enjoy the pics we have posted below (there's a lot of them) and once again we thank you from the bottom of our hearts for your prayers and love.
Goodnight and Lovebug Hugs,
Randy and Lori
Goodnight and Lovebug Hugs,
Randy and Lori
Pictures From Today's EEG
Hey Guys, what's going on around here???? I've got probes all over my head and I'm wrapped up like I had my wisdom teeth pulled....Hey, I don't even have wisdom teeth!!!
Ok, everything's set up and ready to go....
Wow, is that really my brain being measured???? I knew I had a lot of stuff going on up there, and this just proves it......take a look at all those measurements.
During my EEG this morning I took a little nap with my binki.
How can a bug be so cute and have to undergo so many tests......But hey, look at great my color coordination is!!! Thanks to mama, my blanket matches all my new wires!!!
Here's your Little Bug Fix....Yup, that's right, more pictures!! Enjoy!!
Hey guys, how do you like my new do????
Hey guys look, I'm getting better at keeping my binki in all by myself....oops, I dropped it!!
Me and my binki, what a great combination!!!!
Mama's so good about giving me blow-by oxygen!!!! But daddy says, "Hey, get that big blue snake out of my nose!"
Pucker up....here comes a big kiss!!! So 'cmon, let's be real honest here, I really am the cutest little bug in the whole wide world, right?????
Look at me, I'm a little slugger!!! My Great Uncle Randy would be very proud to see me in a baseball outfit. He gave me my very first mit. I can hardly wait to use it.
Little bug and daddy snuggling with Connor's new bumble bee!!
Unlce Gary and Aunt Lynette with cousins, Zachary, Lucas & Savannah on Sunday. Hey guys, have fun in Florida. When you see Mickey and Minnie tell them I will come meet them when I feel better.
Little bug sleeping soundly with ladybug and bumblebee watching over him. Hey, if you look really close you can see Herman peeking out from underneath the covers. Be careful though, if you blink, he will be gone.
Here's Connor with Daddy telling him to straighten up and get better soon.
Tuesday, May 02, 2006
Special Request For Connor!!!
Ok, enough is enough!!! Today we were told that this new breathing "thing" isn't related to his breathing at all. Apparently they think it could be siezure activity. The neurologist met with me today and explained that they will be doing a EEG Tuesday AM and if they see any abnormal activity, they will order a full MRI of his brain to check it out in more detail. This is terribly concerning to us and we are asking for specific prayer in this area. How we are trusting in the Lord that they will find nothing abnormal in Little Bugs brain. We're not sure what time the EEG will take place, but we do know it will be sometime in the morning. I will update as soon as I can with results or information.
Oh Lord, Hear our prayer regarding this new issue for Connor. We know that nothing happens in our lives that hasn't first filtered through your hands. Please give us understanding and insight regarding what the doctors think is seizure activity. We come against this insult in Jesus name and we pray for your sweet mercy and care to rest upon Connor this evening. Please Lord bring healing to his tiny little body and bless his life with good health in your timing we pray. Help Randy and I to sense your presence and to know your will. Give us peace and guard our minds from fear. We trust you Lord, even now in the mindst of our questioning!!! Amen!!
Lovebug Hugs,
Lori
Oh Lord, Hear our prayer regarding this new issue for Connor. We know that nothing happens in our lives that hasn't first filtered through your hands. Please give us understanding and insight regarding what the doctors think is seizure activity. We come against this insult in Jesus name and we pray for your sweet mercy and care to rest upon Connor this evening. Please Lord bring healing to his tiny little body and bless his life with good health in your timing we pray. Help Randy and I to sense your presence and to know your will. Give us peace and guard our minds from fear. We trust you Lord, even now in the mindst of our questioning!!! Amen!!
Lovebug Hugs,
Lori
Miracle for Michael!!!
Thanks for your comments and prayers regarding our little buddy Michael. Yesterday was a difficult day for his family as they prepared to say goodbye to him. Miraculously last night, his kidneys began to function and as of this moment, he is still here fighting for his little life. Please continue to pray for him and his family and thank the Lord for this most spectacular miracle.
Lovebug Hugs,
Lori
Lovebug Hugs,
Lori
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