Daddy's photo gallery

Mommy holding littlebug....and as you can see not to many wires and tubes...YippieOk now its Daddy's turn...isn't he the most hansome little guy you've ever seen...Ok OK ...Daddy might be a little biased. Daddy's holds Littlebug so.....
Mama can take a break!Thanks Grams for the over night visit to allow Mom and Dad to go out to dinner and re-cage our gyro's!....that again is pilot lingo for getting our attitude straight and level and figuring out where we are going!!!
Auntie Heather stops by for visit.....Littlebug loves all this attention!!!

Lovebug hugs....Dad Mom and Littlebug

More of Dad's pictures!

28 Aug 2006....very proud parents of our Littlebug. Moving to the floor only 5 day's after open heart surgery. Connor proved himself to be quite a little figher!

.....we arrive at our new room on the 4th floor. No more ICU and those big needles!! Yippie

Mommy and Daddy setting up our new home...with a view no less!!!!

.....Ok maybe a little too quick on the draw.....but at least it's not pokes just prods...another EKG....and the ticker looks good!!!!

I caught Littlebug this morning hugging one of his many friends.......

......but he really likes to talk to Mr. Bee. And I don't know if you've recognized what Littlebug is doing????....but he is laying on his tummy and doing just fine!!!! Our littebug is doing great and he wanted me to personally thank each and every one of you for your prayers. Herman told him that God said he heard them all!!!!!

Lovebug Hugs......Daddy Mommy and Littlebug!

Littlebug's talk with Daddy

Littlebug was telling me that he'd be real good if I could get him out of ICU cause he's been getting tired of all those pokes OUCH.....so Daddy being such a softy said OK......not much later and we were there!!!! Yippie!!!!! One step closer to home!!!

Lovebug hugs.....Randy Lori and Littlebug

ps....Lori's toe has been spared....amputation is no longer required....headache, well that's another story.

ps#2...I know Lori said in her post I'd send some more pic's.....and I will but.....oops they are still on the memory stick...so be patient OK

On the Floor.......

Hi everyone, Mama here!!! I jsut spent the past 1/2 hour catching up on all of Randy's GREAT blogs!!!! What a blessing it was to spend 2 whole nights at home. As always, my heart and mind are always with my guys, but at least my head was on my own pillow (which was nice becasue I battled a gigantic migrane the majority of my time at home.) I came back yesterday just in time to make the big move out of the ICU and onto the floor. Littlebug has a nice big, bright room all to himself and he seems to like it alot!!! His heart function is doing really well and he is starting to be ready to ween off the oxygen. We are still troubled by the many issues that seem to surround Connor's unique situation. We have many consults to be done with the lung docs, the GI docs, and the general surgeons. How we had hoped that some of these issues would resolve once his heart was fixed. Well, there is still major room for God to do more miracles in his little body and give him relief from his pain. "Lord, we extol you with great praise and thanks for what you have done. We pray for Connor that you would not turn a deaf ear to his pain and that you would find miraculous means to intervene in his situation. He is yours Dear Lord, and we ask you to continue working on his behalf to bring him to complete wholeness!! Amen"

Back to my boys.......Randy is going to post pictures later today!! Thanks honey, for the much needed break and for all your great posts. You've held down the fort well and I am forever grateful to have the best husband in the whole wide world!!! I love you sweetheart!!!! (Sorry bloggers for the mushy sentiment, but some things just have to be said!!!!)

Lovebug Hugs,
Lori, Randy & Littlebug!!!

PS ~ The toe is hanging in there......Not perfect, but not horrible either!!! Thanks for your prayers!!!

It looks like the floor tomorrow!!!!!!!

Ok Dad has to make this a fast one.....Talked with the doc's this morning and it looks like we may be going to the floor tomorrow!!! Littlebug is doing very well!!! Lines and tubes are being pulled out at as fast as I can say "can we get rid of that one too"...so now you can see our little boy....no more "birds nest" of wires, tubes, probes and monitors burying him!!! Yeah!!! More to follow and I got some great pictures to share...so stay tuned.

Lovebug hugs....Randy Lori and Littlebug!

Day 3 after surgery and still going strong !!!!!

Dad here for a quick update. As you can tell I like pictures and like the saying goes " a picture is worth a thousand words", so if my calculations are correct this post has at least 5000 words in it !!! Not bad huh!

Ok here goes....Today started out with Littlebug doing very well with all his numbers looking good except that he still had that nasty garden hose in his nose....AUGH

How would you like to have that big tube up your nose....needless to say when the doc's decided to extibate, Daddy and Mommy were very excited....so at about 0830.....

...out came the ventilator tube and finally our Littlebug had some relief......it also helps to have your little buddies around for support too!

If you've ever wondered where we live....well, its here Lot 4 Emergency Parking. We were preparing for a long haul with this suregery so....

.... we asked Grandma and Grandpa Robertson for the use of their motorhome, which they so graciously let us use...Thanks Mom and Dad! But now we are "hoping" that we may not have to use our "home away from home" that long!! And maybe, just maybe, my hope as a Daddy can come true sooner than we all expected and that is to.............


.....be at home with my littlebug all snuggled up, sleeping in Daddy's arms on our couch!!!!???????


Lovebug hugs....Randy Lori and Littlebug

The ventilator has been removed !!!!!!!

Ok...more good news!! This morning the ICU team decided to extibate. So at about 0830 out came that big ole garden hose that was smash up his poor littlebug nose!!!! Yippie...as you can tell Daddy is very happy about that and so is Mom. It didn't take him long to settle into life without the ventilator and his numbers still looked very good. We are so excited that our little guy is doing better and feeling better too. Again thanks for all your prayers...but dont' stop OK !!!!

By the way, if you haven't figured it out yet by my incomplete sentences....this is Dad writing. And I do have some more good news. I sent Lori home!!!! I consider that a great victory!!! Lori has been continually at Connor's side for so long now she just needs a break so finally she's taking one YEAH!!! I hope I can get her to do this more often...time will tell.

I'll try to put up some more pictures soon....but until then

Lovebug hug and kisses......Daddy Mommy and Littlebug

Littlebug is recovering better than expected !!!!

Hello all you bloggers....just a quick update. It's Dad here so you'll have to put up with incomplete sentences and the like but I'll do my best!

Littlebug is doing good. He's still on the ventalator but yesterday they removed all 3 of the chest tubes and the pace maker wires!! YEAH!!! So he's progressing quite nicely. Today was a possible day for extibation otherwise known as removing the garden hose out of his little nose...AUGH, I can hardly wait. It looks so uncomfortable. But we also don't want to rush it and be forced to intibate again otherwise known as craming that garden hose back down his little precious nose OUCH!!!!!!!! So we are hopeful that soon it will come out. He did spike a slight fever but we think is was mostly due to agitation and not infection. And if you are wondering what to pray for it is just that.....NO INFECTIONS....that is what we really don't want at this delicate stage of recovery.

Well my other patient should be getting back about now....Oh you might not have heard? Lori's toe decided to act up the day of Connor's surgery and we ended up in the UW emergency room that very night!!!!!! Talk about multiple EP's (that emergency procedures in pilot lingo). Connor's in ICU, Lori's hobbling around...what next....maybe I should just go check in at Harborview and make it full circle....just kidding.....Lord forgive me I was only kidding. Sometimes the Lord gives you what you ask for so I better be careful!!!!!

Overall things are going good here and Littlebug is getting better. Keep up the prayers and Littlebug sends you all..........

Lots of Lovebug hugs and kisses

Randy Lori and "Littlebug"

Littlebug's BIG DAY 8/23/06.............. Open Heart Surgery!!!

Littlebugs big day started out at 0630 with Daddy n Mommy a little worried and anxious, but still upbeat for a positive outcome because we know our little guy is a fighter!!!


And as always Dad n Mom put our "heart's" and "our verse" in Connor's little hope chest so it would be with him in the operating room tucked close by his side....and we told Herman to open Littlebugs eyes so he could get a glimpse of it if he got scared.


....and then Daddy and Mommy had quite a prayer time with Littlebug. We read lots of encouraging Bible verses and told him he needed to be really strong and courageous for this day and to be a "fighter"and not to be afraid and on and on we went.......until finally.....


.....Littlebug looked up and opened his eyes as if to say..... "OK...OK Mom and Dad, I know ya love me but can we just get on with this patch job and get this ticker of mine all fixed up...I'm tired of waitin!!!"......we just looked at each other and said....I guess its time....


...so at 0833, off we all went... down the long sterile hallways that we have walked before....but with more trepidation this time.....we said goodbye and once again told him to be strong and that Mommy and Daddy will not be far and not to be afraid. The doors closed to the operating room and for a moment time stood still... we hugged and we cried.....in anxious wonder....



....the next few hours were a reflection in our life and hearts of our littlebug and how much we love him........we wondered and waited and prayed.....


.....and prayed we did...every hour on the hour...with our hospital prayer team as well as our pray warriors out there in bloggerland...way to go!!!!!!.....because at about 1415 we got the news that.....


.....Littlebug had done great!!!!!....and to quote the words of his surgeon, Dr. Permutt...Connor's sucesseful surgery was "beyond his wildest dreams"....needless to say Mommy and Daddy were ecstatic...our hearts were lifted high and we thanked the Lord for letting us keep our littlebug!....close to "our" hearts!

Lovebug hugs.....Dad Mom and "all fixed up Littlebug"

BEYOND OUR WILDEST DREAMS !!!!!!!!!!!

Mon and Dad are elated.........Connor came through the surgery as Dr. Purmitt said "Beyond his wildest dreams".....so littlebug came through fantastic!!!!

Let all praise be given to the Lord, Connor is back in his ICU room and he is stable. We just left him moments ago and he is pink like any normal little baby should be. His heart is beating on its own and his lung are still be supported on the ventulator. All his pressures look fantastic and we anticipate a full recovery!!! We still have a long haul with his lungs, but the heart is strong and we will give God the glory!!!!!!!!

We are exhausted from our day of waiting so we will post again tomorrow with pictures!!! Continue praying for these critical first few days as Connor recovers!!!

Lovebug Hugs,
Randy, Lori & Little Bug

Prayer Focus For Surgery Day Tomorrow!!!

The Lord laid it upon our hearts last night to come up with an hourly prayer focus for our army of prayer warriors that will be upholding us tomorrow when Little Bug goes into the operating room. It is our desire that we all be in one accord and that our hearts be in unity as we pray for Connor and the entire medical staff that is responsible for his care. If you wouldn't mind printing this post out so that you can have it close by tomorrow for prayer, that would be great. We ask that you take the first 5 minutes of every hour to say a specific prayer for Connor as we have listed out requests hour by hour. Thank you for your faithfulness and we anticipate God's healing hand to be upon Connor and we hope for a miracle of healing to touch his body. We will update frequently as we get info from the operating room tomorrow. Our family will be here fighting the battle with us for Connor tomorrow, so we are not alone. Below is the hour by hour prayer focus!! Thank you for praying!!!

Please remember this scirpture throughout the day:
"Now to Him who is able to do immeasurably more than we could ever ask or imagine, according to His power that is at work within us...to Him be Glory throughout all generations for evermore!" Ephesians 3:20-21

7AM - The Surgeon (Dr. Lester Purmitt) - Pray for calm and steady hands, for accuracy and for keen wisdom and decision making ablility for every step of the surgery.

8AM - Anethesiologist Team - Pray for accuracy of IV placement and for optimal pain management for Connor so that he doesn't feel any pain, cuts or pokes.

9AM - Connor's Overall Strength - Pray for strength to tolerate the intrusion of surgery and for strength of his spirit to fight the fight of his life and not give up!!! We are not ready to say goodbye to our Little Bug, so we are asking you to pray that God would spare his life and allow him the opportunity to grow into that mighty man of God we all keep talking about.

10AM - Connor's Heart - Pray that the repair would be done without complications and that his heart would respond quickly to the help that the surgery will provide for his body.

11AM - Connor's Lungs - Pray that his lungs would reduce fluid and that they would respond to the heart/lung bypass machine without rejection. Pray that he would quickly come off the artifical means of heart and lung support without having to go on complete life support.

12PM - Connor's Parents - Pray for increased faith to believe in Connor's healing. For strength to withstand the hours of waiting for news reqarding Connor's progress. Pray that hope would rise within us and that we would be joined in unity as we battle for our precious son.

1PM - Operating Room Team - Connor should be close to trialing off the heart/lung bypass machine and he should be ready for pressure tests within his newly repaired heart. Pray for quick response time and wisdom for the docs to see any potential hazards or obstacles that need to be addressed.

2PM - Post Operative Care Team - Pray for his nurse Mari (whom we love!!!) for her alertness to Connor's needs, swiftness in acting upon any complications, and safe administration of any additional critical care.

3PM & On - Connor's Recovery - We are asking God for a miracle in Little Bug's recovery. Zero infections, complete lung strength and healing, complete heart function and heart strength and for an overall quick recovery time.

We are prepared for a long haul tomorrow and beyond, but we also know that God could, in an instant, heal Connor completely. We ask for this miracle to be done on Connor's behalf and if it be the Lord's will to preform this miracle for Connor, we already give him the glory, the praise and the honor for his mighty works. We look forward to sharing Connor's continued story of healing and we will update best we can throughout the day tomorrow.

Pray for a peaceful night for all of us as we prepare for this most important day in Connor's Adventurous Journey!

Lovebug Hugs,
Lori, Randy & Connor

Surgery is upon us.....

The surgery date has been set for Wednesday morning the 23rd. We met with the surgeon and docs today and went over the entire plan for Connor. There is no other road to travel than the narrow road to the operating room. We have been informed of all the many risks and complications that may occur and we are prepared the best we can for Wednesday. Today they placed a central iv line in Little Bugs right juggular vein. When he goes into the OR on Wednesday they will also place an artirial line in his arm or leg. He is basically ready for Wednesday and they are going to keep him fully sedated and paralyzed until surgery and probably for up to 2 weeks after surgery as well. We are home for the evening to sleep and get rest for the upcoming days. We will head back to Children's tomorrow after lunch and spend the rest of the time there with Connor until surgery.

I will post more later but I wanted to get the basic information out as soon as possible.
Lovebug Hugs,
Lori

New Information...

It is 9:30pm on this Sunday evening and Randy & I just got off the phone with the nurse that is responsible for Connor. He has been desaturating the majority of the evening without being able to come out of it on his own. They suspect that he may be accumulating extra fluid around his lungs and they are preparing for more X-rays at the moment. He had been fighting the breathing tube so the doctor's made the decision to use a paralyzing drug to keep him totally inactive and they have upped his sedation medication as well. He is stable at the time being because he isn't fighting all of the equipment and their plan is to keep him this way at least until mid morning Monday after they make a decision about how to proceed.

Randy & I made the heart-wrenching decision to stay at home this evening to allow ourselves a good nights sleep. We are filled with anguish not to be at Little Bug's bedside, but we realize that our fight may very well just be beginning with our precious son. We have got to find strength and rest. This is the very first time that we will be away from him at night and not just right upstairs at the hospital. At the moment, I don't even know how we will sleep as we are riden with worry and fear. We have tear stained cheeks today as we have spent hours away from Connor, but we are trusting in the Lord as well as the sheer reality of our situation that we need to gain strength. We appreciate all of your prayers and encouragement. We are in desparate need of a fresh wind of hope. As I write these words I must say that we are believing for a miracle, but it feels like we're holding on by a thread. Oh God, give us strength and peace this night. Awaken us with your joy in the morning. Provide a new wave of your power and touch our little boy. Rest upon our hearts now like a gentle dove and give us the precious reassurance that we need to fall asleep.

Lovebug Hugs,
Lori

Emergency!!!!!

I'm sorry this will be a quick post, but I wanted to get the information out to you so you could pray. Last night at 8pm Little Bug had a rapid downward spiral. 911 was called and within minutes there were firetrucks, medic's and ambulances in our neighborhood. Connor could hardly breathe and he wasn't getting enough oxygen even though he was getting it straight in his nose and mouth. His naked little body was so so grey and pale it was hard to even look at him. He had the look of panic and intense fear in his little eyes and there was nothing I could do to console him. We strapped him naked into his carseat and then onto an adult sized gerny (sp?) and then into the ambulance. From right outside of our house we took another lights and sirens ride to Children's Hospital. By the time we got to the ER Connor was struggling so badly that his body and clamped down and there were no veins available to draw blood from and he was spiking a temp in the high 104's. It became evident that this was the worst that Connor has ever been and so they rushed to get the breathing tube in place. He is fully sedated at the moment and the ventulator will remain in place until surgery. There are many questions and they now know that Connor cannot wait any longer. They will meet tomorrow AM to discuss the time frame for surgery and we are gathering that it will be this week.

Thankfully Randy's fishing trip got cut short because of boat problems so when he called to let us know that he was on his way home the medics were here and my mom was able to tell him what was going on. He then met up with us at Children's Hospital a couple hours later. My mom followed behind the ambulance and Auntie Maureen met us at the hospital along with our pastor. It was a critical night and the status hasn't changed much except for the fact that Connor is receiving the breathing support he needs. Randy & I finally left his side at 3:30am to get some sleep. There weren't any sleeping rooms available so we slept in the back of my parents CRV. Let me tell you, this was quite an adventure. This morning there has been no change and Randy & I actually came home to pull together the loose ends of life right now. We are trying to prepare for another long haul stay up at Children's. Connor is definately in critical condition and this surgery is going to be a very high risk surgery. We need prayer like never before. Selfishly we would ask very specifically that you all pray that God would spare Little Bug's life and allow him to make it through this surgery with great success. God is bigger than Connor's illnesses and He is a healing God. We trust in Him to preform a miracle on his behalf. Lord, in the midst of this crisis we trust in you. We lean on your word and we have faith to believe you for what only you can do!!!! Amen

Lovebug Hugs,
Lori

Struggles continue!!!

Connor continues to struggle. He is only sleeping for moments at a time and then he wakes up startled, coughing and gagging and screaming. His oxygen requirements have definately gone up and he is needing a lot more support then I had anticipated. His coloring is changing to a pretty constant sheen of dusky grey and when his oxygen is quite low, he is turning blue around his lips. It is so hard to see Connor this way. I am so thankful that my mom is here with me because this is certainly not a job for one person. Connor demands constant attention and it is exhausting. My prayer is that he can actually hold out until the surgery without having some kind of emergency. Connor needs a miracle. His body needs to find relief and rest and at the current moment, I don't see this in sight. Please continue praying.

Today is the funeral for our dear sweet friend Alanah. I was asked by the family to be a special speaker so I prepared the following words to be read at todays service. Please pray that God would give me strength to do this most difficult task!!!


Alanah Catherine Jewett
Celebration of Life
________________________________________________
The greatest gift that God could send
He sent with love to you.
A sweet and helpless little child
She was an obligation too.
Each baby that God gives to us, is merely lent awhile
To cherish, love, protect and guard, from every snare and wile.
To form within her childish heart, His image good and true.
God bless you baby Alanah and may you always know,
The blessings you brought to our lives, we forever now bestow.

It was 3 ½ months ago that the Jewett’s entered my life. We share the experience of a critically ill child, long days and endless nights in the ICU at Children’s Hospital and our faith and trust in God. The closeness shared between parents who have sick children is truly remarkable. We celebrate milestones together and we grieve losses heart to heart. Today we grieve the loss of one of God’s precious angels, Alanah Catherine Jewett. I remember the very 1st day I met Alanah and how I was struck with her gorgeous dark hair and her seemingly endless gaze. Her presence had a way of climbing straight into your heart and mine was no different. In my interactions with Alanah, it was her sweetness and grace that I will always treasure.

Alanah knew what every baby should know. She knew the love of her mother and she knew the strength of her father. She knew the giggles of her sisters Kaylin & Rosali when they would climb into her hospital crib. She knew the melody of the songs her grandma would sing to her while she cradled her. Alanah also knew things that most babies never know. She knew the look of an operating room and the sounds of monitor alarms. She knew the myriad of faces of the doctors & nurses that were responsible for her care (and I’m sure she had her favorites!) She knew the pain of needle pokes & IV’s and she knew the struggles of being a baby born with a major heart defect.

Although Alanah knew these things and was well acquainted with the discomforts of infant sickness, I believe that because of this she was also very familiar with the face of God. The face of God followed her into procedures and operating rooms when her parents could not. The face of God was etched upon her delicate eyelids as she lay in her crib sleeping. The face of God she knew so well from the very moment she was conceived within her mother’s womb. When Alanah left the arms of God to be born to her parents, I’m sure He smiled & winked at her before he delivered her into the ever-waiting arms of Corey and Shawna. I believe that her only instruction from the Lord was that she bring the joy and hope of heaven to all she came into contact with on earth. Well, Alanah followed those instructions perfectly. I can say as one who spent time with her that she opened up heaven to me each time I looked into her eyes. On Wednesday when Alanah left the arms of her parents and was once again entered into heaven, I believe the Lord held her close and with a tear of welcome in His eyes He said, “Job well done Alanah. You have brought My love into the world and the world will never be the same again.”

To Alanah’s parents, Corey & Shawna and to the entire family my prayer for you is this:
In your weakest moments, hold on to the fight that you witnessed time and time again in Alanah.
In your darkest hours, look to the light and glimmer that abounded in Alanah’s gaze.
In your hours of deepest grief, allow God’s grace to twinkle around your hearts just like Alanah twinkled each time you held her.
May the sweet and tender arms of Heaven embrace you with love, envelop you with peace and comfort you with all hope.
_____________________________________________
Please say extra prayers for my mom as she will be here with Connor by herself for about 3 hours while I am gone at the funeral. Pray for stability for Connor and clarity for mom!!!! Thanks for your faithfulness!!!

Lovebug Hugs,
Lori

Sleepless Night!!

With a heavy heart I write this message this morning. I am sad to report that just before leaving the hospital last night I received a phone call from our ICU friend Shauna. We have all been praying for their daughter Allanah for the past 3 months. Little Allanah took a turn for the worse late yesterday afternoon and they could not revive her. The Lord saw fit to bring another precious baby into the gates of heaven and we are left questioning why and wondering when this will end. I have to be honest, I am still in shock at this moment as I write because the thoughts of Allanah going home were so close. Please pray for the Jewitt family and uphold them before the Lord. They are all struggling with the reality of what has happened and now they must put together the pieces for the rest of their family. We know that Allanah was received lovingly by her band of angels that had gone before. I am confident that Stone, Michael, Jonah and Sarah were all ready for her arrival. It is with the deepest yearnings of sadness that we say goodbye but it is also with great peace that we see their healing. Lord be with our angels and let them hover near us this day!!!

Connor had a most difficult night at home and it was pretty sleepless for mom and grandma as well. My mom accompanied us home last night as Randy is away on a fishing trip. Thankfully she was here. Connor must be having a terribly adverse reaction to a new medicine that they put him on because he coughed, gagged, choked and screamed all night long. He is finding some moments of rest at the current moment, but we don't know what today will hold. I have called the docs at Children's and they said to hold the dose of the new medicine today and see if things subside. How we had hoped that home would be a restful, peaceful place. At the time being, it is not!

Please pray for us with weary, tired and heavy hearts.
Lovebug Hugs,
Lori

Here we go.......

Well, it has been 12 days since our airlift back to Children's and it looks like we are heading out of here tonight. The docs ok'd us to go home and wait for our surgery date, which by the way is September 7th. Our instructions are to stay as healthy as we can, keep away from germs and any other dangerous intruder to Connor's health and to rest. I just met with the home health care company to receive my education on the monitor and oxygen supplies we are going home with. As hard as I tried to keep "home" a place that was free of medical and hospital supplies, I lost the battle as it is essential that Little Bug gets a little extra oxygen every now and then. I keep reminding myself it is only for 3 weeks and then the next time we come home it will hopefully be free of hospital stuff!!!

We were pleased to get on the surgery schedule, but disappointed we had to wait. We understand that the hospital is crazy busy this time of year and we pray and trust that the wait won't be too long for Connor. It is absolutely essential that we keep him in prime shape, because another trip back to the ER would be a horrible setback for Little Bug. This is where we need to concentrate our prayers. Lord we pray a perfect hedge of protection around Connor over these next 22 days until surgery. Keep him in stable health and prepare his little body for the surgery that he will undergo. We trust you to answer this prayer regarding Connor and we again stand in faith waiting with all hope for a mighty miracle on his behalf!! Amen

Today's Gastric Emptying Study in the nuclear medicine department went well. They determined that there was no reflux or micro-aspirations and his tummy emptys just fine. Good news, yes! But it does lead to further evidence that Connor is definately in Congestive Heart Failure. The cough and the gagging are more than likely signs of pulmonary ademea rather than the reflux like we thought. There still is no word on getting him help with the "pooping" problem but we are trusting that maybe even that will improve once is little heart is fixed.

Your encouragement and prayers over the past week has been especially helpful to me as I have really been in a low place. Thank you for your concerns and kind words!!! I can't wait to sleep at home tonight and wake up in our own house!!!

I'll post from home tomorrow with an update!!! Thanks for your prayers.
Lovebug Hugs,
Lori

You probably guessed it......

By nature of no new posts for the past 3 days I'm sure you've already guessed it.......we were moved to the floor late Saturday afternoon. Beyond our better judgement of course, but nontheless, they sent us to the floor. Sunday evening Little Bug started having some difficult episodes and by 3:30 this morning he was beside himself. He and I rocked most of the night and we waited for doctors to come talk with us this morning. You can imagine my frustration as I have already admitted, "I'm tired of talking"!!! The Cardiologist on service this week echoed my own frustration and upon his examination of him around noon today, he agreed that Connor is definately in congestive heart failure. His liver is enlarged, his lungs are hyperinflated, he is retaining fluid, his oxygen is low and he is struggling for his breaths. He sent us down to the GI lab for a test to determine his reflux status, but the radiologist didn't believe that it would lend any helpful information so she didn't do it. She instead checked the placement of his GJ feeding tube and established that the Nissen (that was done in March to fix his reflux) had definately slipped and it wasn't working properly. Really, no new info. We knew all of that. The radiologist suggested to the docs that Connor undergo a Gastric Emptying study so they are going to proceed with that on Wednesday. Basically this particular cardiologist wants to rule out any other thing, like aspiration pnemonia, so they can target the surgeons with the urgency to getting Connor's heart repaired. In the mean time, we sit here waiting. Little Bug struggling, Daddy and Mama tired and frustrated.

Thanks for your always faithful prayers and support. We love you all!!
Lovebug Hugs,
Lori

Decision has been made.....

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

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!!!!