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!!!!

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

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

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

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

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

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

Back At Children's Hospital......

After 2 days of Little Bug's 1st camping trip to Wenatchee, we were airlifted back to Children's Hospital yesterday. He had been doing great and tolerating the warm weather just fine, not to mention all the love he was getting from his Grandma and Aunties, but something changed throughout the night on Thursday. He was cranky and fussy all night long and when the sun came up on Friday morning Little Bug just couldn't pull himself out of it. He was crying so hard that he couldn't hardly breathe and then his temperature started to rise. I knew we couldn't head back over the pass with him this bad. I literally felt like he would not survive. Randy and I prayed that the Lord would give us discernment and so we took him immediately to the Wenatchee Hospital ER and they were in a tailspin. They were all incredibly kind, but clearly not equipped to handle a pediatric crisis such as this. They were swarming around us like bees to honey and finally made the decision to airlift Connor and I to Children's here in Seattle. They actually had the Flight For Life people coming for another child, but they stablized that child and sent Connor instead. From the hospital in Wenatchee we took a "Lights & Siren's" ambulance ride to the airport, boarded a leer jet and sped to Boeing Field. From there, we climbed on board another ambulance and fought the Seattle SeaFair traffic and finally arrived here at Children's yesterday at 3:00pm. We were greeted in the ER by all our familiar ICU doctors and nurses and they saw that Little Bug was in significant distress. His temp at risen to 106.5 and they were frantically trying to get him cooled off before settling him into his ICU room. He was working so hard to breathe that his respiration rate was consistantly in the 100's and his heart rate was hovering in the low 200's. After many attempts, they finally got IV access with a head poke late in the afternoon and were able to pump him full of fluids. He is stablized now but still fighting the fever, on the c-pap, oxygen and also fighting a terrible cough and yucky poops!!!

Randy headed over the pass after we were airlifted yesterday and met us here at the hospital last night. After a short visit he had to head home because he left on another military stage this afternoon. He had such a difficult time leaving us with Connor so sick. Please pray that the Lord give Randy the peace of mind that he needs to effectively fly his airplane and accomplish his mission. They haven't given me a time frame or an outlook of how long we will be here, but they know Connor's history so they aren't getting rid of us any time soon, I'm sure. In my heart, I believe that this emergency trip has definately turned the course of Connor's treatment. I think that everyone finally concurs that Little Bug needs his heart repaired sooner rather than later. My gutt feeling is that they are going to wait for whatever is currently going on to subside and then they are going to find their window of opportunity to do his heart surgery. It is going to be very risky and we need to pray like crazy that Little Bug fights the fight of his life. They are worried and so are we that his little lungs might not be able to fight that hard, but we know that Connor has the fight of Jesus in him and we know that God is going to protect our little guy. Please continue to pray for Connor. He is very weak at the moment and needs the healing touch of our heavenly father to come over his little body.

I am exhausted tonight so I signed up for one of the ICU sleeping rooms and I just got the call that one was available so I am off to get a good nights sleep. I must remember now that not only does Little Bug need mama to be strong, but so does Itty Bitty Baby Bug growing inside of me. Our nurse is great this evening so I am not worried to leave him in her capable care. I will update more tomorrow with reflections of our experience over the past couple of days.

Thanks for all your words of encouragement and congratulations for the new baby on the way. Continue to pray for a healthy pregnancy for mama but most of all for Little Bug to get strong for his surgery.

All our Lovebug Hugs,
Lori

PS ~ We made the neatest connection with a family yesterday that we are so excited about. God is so good and He knows exactly who to put in our path at the right time. John and Lori, you are awesome and we loved meeting little Ian. Get strong little fella, you're our hero!!!!

Little Bug's Got A Secret..............

Can you see Little Bug saying, "Sssshhhhh....I've got a secret!!"

Connor's just about bursting at the seams with a secret. He's been wanting to shout it from the mountain tops since Saturday night, but Daddy and Mama told him he had to wait. He's been so disappointed that he couldn't say anything because this is REALLY BIG NEWS for him. He's spent so much time being sick and in the hospital he couldn't wait to hear that he was going to have a new job to uphold in the family. We personally think he is going to do a fabulous job at his new duties. Oh, I bet you're all wondering, "What is this new job Little Bug has to do????" Well in Connor's words he wants to tell all of his family and friends that he is going to be a Big Brother!!!! Yup, that's right, a big brother!!!!!!

We are thrilled to announce the news that we are expecting baby #2. We just found out and we are absolutely ecstatic. We still have yet to see the doctor for the "official" word, but hey, a plus sign is a plus sign, right??? We would respectfully ask for your most earnest prayers that God would touch this new little baby in a special way and that health and wholeness would surround this new "Little Bugaboo" growing inside of mama's tummy. We are trusting the Lord for a great pregnancy and a healthy baby to arrive sometime early March.

If we didn't have the chance to contact you personally, please forgive us but the information got out there sooner than we expected. We will try to catch up with personal phone calls in the coming days. As for now, we will continue with our great excitement and we will anticipate the arrival of a new Little Bug to love.

Lovebug Hugs,
Randy, Lori, Little Bug and "Itty Bitty Wee" Little Bugaboo

Home Again!!!!

We're safe and sound and tucked back into our own home. Little Bug is content as can be and when I just left him he was nustled into his daddy's arms.....Yup, that's right, Daddy!!! When we got home a little after 8pm I walked into the kitchen to find a letter on the table from Randy and a fresh rose from our rose garden. The note took me on 8 different clues until I finally found Daddy hiding in our guest room closet. What a surprise. The military trip was cut short because of the humanitarian efforts out of Cyprus and we get the great blessing of having Randy home with us. Praise the Lord for answered prayers. It has been an encouraging day for me and so we will all go to bed tonight with a sweet spirit of peace as we rest as family in the safe and loving arms of home.

Goodnight & Lovebug Hugs,
Lori

IT'S A MIRACLE.......4 POOPS & NO PAIN!!!!!!!

WOW, Little Bug is doing considerably better today. He is totally back to his normal little self with happy sounds and coos and cute little looks. What they attribute all of this "stuff" to, we'll pprobably never know. The biggest thing is that he has had 4 poops today and no screaming and writhing in pain. What could be different today? Nobody knows. The GI doc is having us to an ultrasound of his abdomen to see if there is any possibility that he has gall stones. They don't think it's probable, but we've all heard that before. We will go for an ultrasound at 4pm and then the big news is..................we're headed home!!!!! Praise the Lord we can rest in the comfort of our own home tonight!!! We are going to continue to be followed by the GI docs on an outpatient basis so we can really find the source of all of this pain. If they find nothing through testing and Little Bug improves they say it was just an issue of Connor needing to grow. I say, "nonsense"!! When Connor improves it's because the hand of God has reached in and healed his body. Dear Lord, "Let it be so!!" Amen!!!

Randy contacted me just a couple of hours ago from McGuire AFB in New Jersey. He was ecstatic to hear the Connor was doing so much better. He can't wait to be on his way home soon and back in our arms!!!! Be safe honey. We will see you soon!!!!

As always, with another admission here at Children's, I have made many new friends. Would you say special prayers for our new friend Ben who is 6 years old and dealing with swelling in his brain. Also, our little roomie Simon. He is the absolute most adorable baby. He has a heart difficulty that makes his little heart beat extremely fast. His family is from Bremerton and would really appreciate the prayer support. We made more friends in the family room just moments ago and they are awaiting results from a physician consultation regarding their son, Chase. He is a kiddo with a major heart defect that has been repaired, but now he is 6 years old and is dealing with a very rare type of bronchitis. It sounds like it is so rare, they have no treatment. Needless to say, these parents and Chase's sister are worried and scared. They need to know you Lord in a special way. Please give wisdom to the docs and peace for this sweet family. Thanks for all the extra prayers for our new friends.

Lovebug Hugs,
Lori

PS ~ I will hopefully blog from home this evening with good news regarding the ultrasound!!!!

Rest, rest, sweet rest!!!!

Thank you for your prayers for rest!! We both had a great night of sleep last night. Despite the beeps and alarms and crys from our little roomie, we both surrendered to sleep and feel rested this morning. At 7am today we had a consultation with one of the main GI specialists. He did have some new insight for Little Bug, but nothing really huge. They will be stopping one of his reflux meds and upping the dose of another one of the reflux meds. They will try to add fiber to his formula to see if that will help his bowels release easier!! He also believes that Connor may have a spastic bowel response which can be common in some children. There is nothing you can do about it, but we all know that we can petition the Lord and He will hear our prayer and heal Connor of this pain. They will make small changes today and then we will see how he responds to the medication change. Hopefully we are close to heading home since he has gone 24 hours without a fever. He is sounding clear in his lungs and he has been keeping up his oxygen all on his own without the help of blowby or canula oxygen. Today we hope to get him unplugged from all his wires and go for a walk. We just need to get back to normal. It was splendid to wake up to his usual coos and sounds this morning. I think I'm getting my baby back. Wow, it's wonderful that he turned the corner and is acting more like himself.

I will post more when I can. Continue to pray, Connor still needs healing from his pain. Thank you for your faithful prayers.

Lovebug Hugs,
Lori

Moved to the 4th floor with no answers....

It was frustrating today to get moved out of the ICU and onto the floor with no answers for anything Little Bug is experiencing. He is still fevering, still crying uncontrolably with GI issues and just downright not himself. We are tired and we are hoping for something tomorrow. We were supposed to meet with a GI doc today, but he never came. We are told we are first on the list for tomorrow morning so we shall see. We are bunking in with a 2 week old baby that doesn't have parents that are able to be with him at the moment and he needs consoling. I have a feeling it is going to be another LONG night!!! I trust that the Lord has heard our prayers and our cries for answers and rest so we await answers and new hope tomorrow.

Lovebug Hugs,
Lori

Sooooooooooo Tired!!!!!!!

Whoever said that children's roughest hours were at night when they are sick was definately right. After such a good late afternoon and early evening yesterday, Connor went back to the fever, fussiness and screaming the majority of the night. It was disappointing to have a nurse that wasn't supportive during these hours so needless to say, mama didn't get any sleep again. I am exhausted today. I just splashed some cold water on my face at 7am hoping that would help, but it did not. We have got to get to the bottom of these problems for Little Bug. We are all suffering because he is not at peace. Oh Lord, Please find it in your heart to bring us all relief today. Shower over us with incomprehendable peace and rest. May your insurmountable wisdom pour out of our doctors today. With a fresh wind of knowledge and discovery may they find something they have not seen before. Please dear God, let Connor be healed from his pain. Amen.

Lovebug hugs & yawns too,
Lori

Monday Evening Update

This is day number 3 of this admission to Children's Hospital and we are making slow progress. Little Bug struggled again last night and had a very difficult time finding rest and peace in the midst of spiking fever after fever and fighting the c-pap machine. This morning was equally as hard for him and finally a little after 9am he surrendered to sleep. After waking from his morning nap he had a busy afternoon of tests and blood draw attempts and an echo-cardiogram. He tolerated all of these intrutions fairly well except for the afternoon spike of 104.7 with his temp. Dr. Badden (our favorite ICU cardiac doc) was finally able to get blood from Connor around 5pm. They sent it all to the lab for many tests and we should know preliminary results sometime tomorrow. They are still stumped as to what is going on both with the fever and with the GI complications. Late this afternoon I requested that they give Little Bug a trial off of the c-pap to see how he would do. That was around 3:45pm and he is currently still off and very comfortable with his breathing and oxygen saturations. Praise the Lord for this, I know God is answering our prayers for Connor. Since his spike in temp this afternoon he hasn't gone up again so he is quite happy at the moment with no drugs on board to help him settle down. We are hoping for a positive night for him with much rest (and for mama too!!). Tomorrow we should hear from the GI specialist to find out what to do next and how to proceed with this particular problem. After they decide what is making him spike the fevers we should be able to treat him and hopefully go back home.

Thank you to Dad and Mom M. for helping with Abbey over the weekend. She is now in the very capable hands of our sweet neighbor's Dave & Lisa. Thanks guys for being willing to help out while we are up here and Randy is gone. Abbey says thanks too and so do the flowers!!! You guys are great!!!!

It was nice this evening to be able to hold Connor for the first time since very early Saturday AM. I realize when I can't snuggle him how very much I need him in my arms to love and protect. While we were snuggling tonight we got another call from Daddy in Germany. He was so glad to hear that Little Bug was off the c-pap and in my arms. He is scheduled to be home around this time next week and we hope he finds us back at home and not still here at the hospital.

I will post more tomorrow evening with an update and hopefully we will know a better plan for heading toward home. As always, if anything happens before that I will post an update so you can be praying more specifically.

Thanks once agian for all the love and prayers. Our Lord is hearing and answering and Connor is looking some better as of this evening!!!!

Lovebug Hugs,
Lori

Sunday Evening.........

Little Bug is holding his own at the moment. He is still on c-pap because he needs the help with his breathing. Today he was more content than he has been for days. He has fallen asleep now and I am hoping to do the same. There weren't any significant changes for him today and the docs did start him on a mild antibiotic. There's a possibility that he may have pnemonia in his right lung. They are watching him carefully. We think his fever finally broke this afternoon because he is cool and comfortable now. This week will hold many tests and consultations to hopefully get to the bottom of the problem.

Today was a wonderful day of support for me. Dad and Mom M. came this morning with some changes of clothes for me, which is great and they took me out to lunch with Uncle Larry, Aunt Maureen and cousin Derek. Dad and Mom R. came this afternoon with Aunt Kathy and Auntie Teresa too. It's always so wonderful to have supporting family around at these critical times when Little Bug is struggling and Randy is away. We also received an encouraging visit from our pastor and friend from church. What a wonderful time of prayer we had over Little Bug. He listened so intently to the reading of scripture and the prayers that were spoken over him, it was just precious.

Thanks for all the loving support today. I will update more tomorrow when we will hopefully start to make some headway on what is going on with Little Bug.

All our Lovebug Hugs,
Lori

PS ~ It was great to hear from Randy from Germany. I love this blog because he can stay connected even when he cannot call. I love you honey. Be safe and know that Little Bug is fighting his way back to better health. We both love you so much and are so proud of you!!!

Very Long Night!!!!!!!!

Good Morning Family & Friends ~

After much poking and proding, Connor still hasn't given up enough blood for the docs to send it to the lab. He is so stingy with his blood and they have been trying to spare him from going to the Operating Room and getting a central line. I've put my foot down on that one because last time we were here he got an infection each time he had central line access. Little Bug is just in a fretful state. He is thrashing around and wiggly and he just can't seem to find comfort. Throughout the night he received many different sleeping agents to help him get some zzzz's but he fought through each and every one of them. I finally broke down and allowed them to give him Ativan a little bit ago and so now he is sleeping and still. After talking with the ICU docs this morning in rounds they are fairly certain that Connor has a respitory infection that is causing the labored breathing and fever. His lung X-ray showed some "gunky" hazziness on the right side. Since they are unable to get blood at the moment, they don't know if it is a virus or a bacteria based infection. He is in significant GI distress as well, but this is not new. It does, however, seem to be worsened by whatever else is currently going on.

The goal for today is to keep him comfortable and allow him to sleep. Now that he is bigger and more active, it is very difficult for him not to fight the c-pap machine and try to pull it off. They've talked about restraining him, but at the moment he just has little white socks on his hands so he can't pull the c-pap off. As hard as it is to be here, we have reconected with friends and nurses and docs that love us and Little Bug so much!! I was able to get through to Randy late yesterday afternoon so he does know what is going on. He is worried and concerned but glad that he knows so he can pray!!

Thanks for praying troops!!!! You are all the army of God and we depend on your every mention of Little Bug our ever-caring Lord. Thank you Thank you Thank you!!!!!!!

Lovebug Hugs,
Lori

3 days of struggles & we're back in the ICU

I actually can't believe it, but I'm writting this post from the family room at Children's Hospital. You know what that means, right? Yes, you guessed it, we're back in the ICU. Little Bug has been in significant distress since the wee hours of the morning on Thursday. He had gotten his shots on Wednesday and so we thought that the fever and fussiness were related to that. When he continued to scream and cry and his fever continued to rise, I took him back to the doctor. Of course for the hour we were in the docs office, Connor was sheer perfection, not a peep to mention. Then we went home on Friday morning and he continued to escalate with distress. I kept trying not to overeact and bring him straight to the hospital, but my gutt feeling was that something was really wrong. Sure enough this morning I watched his distress turn into panic and he started experiencing some of the same things he would do months ago when everyone at the hospital labled it "episodes". So, back to Children's we came. First to the ER where they expidited us right through and then an admission to the ICU. He is stuggling terribly and I am worried. Daddy is gone overseas, as of yesterday and I am really feeling his absence. My mom stayed the night with me at our house last night and came to the ER with me today. She just left for home this evening and Little Bug and I are in for another night back in the ICU. I'm sure there will be lots of tests to do, but for the moment, they are still just trying to quiet him down so he will sleep. He has gone almost 3 days without sleeping, except for 10-15 minute catnaps.

Please pray for Connor. Please pray, like never before, for these docs that they would have wisdom to pinpoint the problem. I will stay updated as best I can, but for now...PRAY PRAY PRAY!!!!!!

Lovebug Hugs,
Lori

Little Bug Finally Caught On Camera Smiling...

I finally caught a smile on camera. Little Bug just lights up the room when he flashes his grin. He doesn't do it often enough though. We are getting many more out of him than before, but we can't wait for giggles and belly laughs!!! For right now though, this is the greatest thing on earth to show off his grin to the world!!!! Oh how he melts our hearts. I feel all squishing inside just looking at this picture. And if you get the urge to kiss your computer screen go ahead, just remember to take your lipstick off our your husband will get cranky because he has to clean the screen.......Ok, that's one from personal experience!!! Hee Hee



It’s been far too long since I sat down and put my fingers to the keyboard to do an update on life at home with Little Bug. Today I seem especially reminiscent because it was a month ago today that we got our official walking orders from Children’s Hospital after our 111 day stay. In just one short month we have had many “firsts”. We went on our 1st official stroller ride the very same day we came home from the hospital. We strolled around our neighborhood and went to the park and I think both Randy and I were gleaming the whole way. We were as happy as we could be showing off our Little Bug around the neighborhood. I remember that night saying to Randy, “Honey, I think I’m as happy today as the day we became husband and wife!!” He definitely had to agree!!!! Connor has also taken his first trips to the grocery store and even Home Depot!!! We figure he better start getting used to Dad’s favorite store sooner or later!!

I have to tell you the funniest story. One day I had to go to the grocery store, and I was in the produce department and I heard a soft voice say, “Little Bug! Excuse me. Are you Little Bug’s mom?” I turned around in utter disbelief and I said, “Well, yes. Yes I am.” The woman proceeded to tell me that she had been following Connor’s blog for at least a couple of months and she recognized me from the pictures. She began to explain the line of people that she knew that also knew us, but that we didn’t know her personally. As we visited she shared how Connor’s story was inspiring her in her faith and her belief in God. After a hug in the produce isle I proceed to go home. As I drove away from Safeway that afternoon I had to say thank you Lord for Connor’s story touching the world. To have a complete stranger approach me in the produce isle of the grocery store was incredibly touching.

We have made many trips back to Children’s Hospital for appointments and ER visits. Last week when we went for our GI follow up appointment they decided that Connor needed a biopsy to check for milk protein allergies. We went back on Friday to have that done and when we approached the day surgery desk, Paula greeted us and said, “Well hello Little Bug.” I laughed and thought to myself, “Kid you’re getting famous!!” I inquired with Paula and asked how she knew we called Connor, Little Bug. Well, one of our favorite operating room nurses, Heidi, had seen Connor’s name on the docket for day surgery and told Paula all about him. They proceeded to pawn their way through a box of Beanie Babies that they give all the kids that come for day surgery. Heidi told Paula, “We just have to find “bugs” to give to Connor. Sure enough, after my visit with Paula she handed me a little ladybug and the cutest dragonfly. Way to go gals!!! Just the mention of Little Bug around that hospital and somebody remembers him and his story. Sure enough, Heidi was able to be the comforting hands that held Little Bug during his procedure. We got the results back today and sure enough, he has what they call “Allergic Proctitis and Allergic Colitis”. The recommendation is that Connor goes off mama’s milk for the time being and goes on a formula that is specific for this type of allergy. We can’t afford for him to continue with this blood in his stool problem because he could become iron deficient. The plan is to put him on formula up until surgery and then maybe we can try him back on mama’s milk toward the end of the year. It goes without saying that this has been very difficult for me to take, but the Lord has given me perfect peace about it after having many differing opinions get involved. I know that my pumping was not in vein and I am pleased with the amount of mama’s milk he has gotten to this point. Hopefully, he will get back to the mammoth supply stocked up in the freezer. Only time will tell.

Connor has been receiving physical and oral therapy here at home for the past 2 weeks. He is doing fairly well with his new exercises and we work hard with him to build his little muscles in his neck. We have a lot of catching up to do, but we are confident that Little Bug will rise to the challenge and get up to speed in no time. He is struggling a bit with his oral therapy and not liking his binki trainer much these days. He does however, like the fact that we have started giving him baby pears on the end of our finger a few times a day to get him engaged in new tastes. He seems to like this really well. We have been trying to spend as much time outside on the deck as we can. Little Bug loves the fresh air and it is so good for him to be outside to look at new things. He loves to look at trees. He sleeps great after a long evening walk as well!!! We meet regularly with our pediatrician and our cardiologist. They think he’s doing well with his weight gain, 11 pounds 10 ounces as of today. As Randy mentioned in his previous blog, the cardiologist is a bit concerned about Connor’s Pulmonary Hypertension and so he is starting him on new round of antibiotics until his surgery in September. Other than that, life is pretty normal for us at home. I am really enjoying being a housewife and mom. We are finally organized and we have our routine down pat!!! Thank the Lord for organizational bins and checklists!!!!! Anyone with a child with medical necessities will know what I mean!! Morning and evening meds go much easier with a set in stone routine!!! Boy was mom ever right when she said, “Children crave routines.” Connor certainly fits that bill. Even though he sleeps beautifully at night, he awakes in the morning by 6:30 cooing in his cradle. He’s back to sleep by 7:30 for a cat nap. Meds by 8:30 and another morning nap by 9:30-11:00. Then he catnaps throughout the day a little, has a really fussy time during dinner (of course) then meds at 8:30 again a small nap until 9:00pm. Up and alert and playing until 10:30, then out like a light for the rest of the night. He’s just like clockwork and we love him so much!!!! There you go, a day in the life of Little Bug!!!

We were sad to get word on Friday that our precious little baby Sarah, who was Connor’s roommate for some time at Children’s, passed away. She had a two and half month fight with a major heart defect and the Lord saw fit, once again, to call her home to heaven. How we don’t understand the ways of God. Our hearts go out to Adam and Jessica and Sarah’s grandma Carol. We love you baby Sarah. Now that you are in Heaven, please have Stone, Michael and Jonah watch over you on the playground near the Pearly Gates!! Rest in the arms of Jesus and be healed sweet little one!!!

For those of you that have followed the blog for sometime, you may remember seeing comments written from my dear friend Ruthie! Please say a prayer for her and her family as her Dad, Ed went to be with the Lord on Sunday. As his wife Nancy said, “He is finally healed and walking without his braces and crutches.” Our love and prayers go out to the Livingston’s in Wyoming!!

Randy and I were commenting just the other night that this year has brought with it many levels of grief for us. We have battled through disappointment, depression, unanswered prayers, death, severe illness and separation. What a trying 7 months it has been. We are realizing a whole new perspective on God’s Grace. We have yet to understand the why’s, but we are beginning to understand that what God wants from us is that our hearts and minds be totally surrendered to him and to his ways. “No ear has heard, No eye has seen what is in store for them that love God.” We don’t know why God has allowed our eyes to see such grief or why are hearts have cried for several days straight, but we do know that God is building us up to be more compassionate people. People more concerned with the hearts and souls of others rather than the tasks we get ourselves involved in. People who realize that loving without limits and loving in spite of a situation are more blessed than anyone else. People who are generous with kindness and who take great delight in the smile and the laughter of a child. We are becoming better people because of our son, Connor. Little Bug will one day here the story of his rough beginning to life. He will also here that his Daddy and Mama wouldn’t change a single day of the journey because it has made us who we are today…..People of destiny and people who are richer in faith from this very experience. Thank you Little Bug for this most gracious and important lesson in life.

Lovebug Hugs,
Lori

Funniest thing happened on the way to the ER on Saturday!!!

Most moms will read this blog with absolute hilarity and say, “Finally, someone else has walked in my shoes just once!” Well, pull out the Depends if you are bladder challenged in any way, because this one’s funny.

Saturday morning we woke up to bright blue sky here in Auburn and I said to myself, “It’s a great day to take Connor to the berry farm and pick out some berries and make our yearly supply of freezer jam.” So we got up and got ready for the day, ate breakfast with daddy and we were all about the business of making jam. I was checking my supply of sugar and containers and making my list of needs when I heard the ever dreadful “Beep Beep of Little Bug’s feeding pump. I just hate to hear those alarms because I am always wondering if this will be the alarm we can’t fix at home. Well, sure enough when I went over to read the machine it said, “No flow in.” So, I proceeded to try all of my “tricks” at unclogging the dreadful J-tube because I know if I can’t fix it, it means pack up and head to Children’s Hospital ER. For the next 2 hours Randy and I feverishly try to get that pesky tube unclogged. It’s as hard as a rock and we can’t get it to budge. So, with a grumpy attitude and a huff in my voice, I regretfully packed the diaper bag and secured Connor into his car seat and headed toward Children’s Hospital. Most of you that know me well, know that I can get pretty task oriented sometimes so once we were strapped into the car, I was thinking, “Get to the ER and get this day moving forward.” Little Bug decided not to be such a good car seat rider and he was screaming his lungs out. I thought his eyeballs were going to bulge right out of his face. And then I heard it…..It was an explosion of volcanic magnitude and then the crying ceased. Connor had pooped so bad I could already smell it up front. So, we weren’t more than a mile down the freeway and I stopped on the side of Hwy 167 to change the poopy!!! Not only had he pooped, he had totally wiped out the outfit he was in. Thank goodness I pack another outfit or we would have arrived at the ER only wearing a diaper. So after 10 minutes we were back on the road with the same task oriented thought, “Get to the ER and get this day moving forward.” After about 5 miles I looked on my dash to see a blinking red light that looked like Aladdin’s Lamp dripping oil. I thought to myself, this can’t be good. So I called Randy who happened to be on the base doing simulator training. He said, “Well Honey, you should check the manual and see how far you can travel and then you’ll have to stop and change the oil.” GREAT, I thought!!! So I pulled over on the side of the freeway again. As I am thumbing through the manual the car shakes every time a car zooms by at full speed and I’m just sure that this can’t be safe. Once I finally found the corresponding picture in the manual to what I was looking at on the dash, this is what I read, “If the oil light comes on and is flashing, pull over to the side of the road and turn off the vehicle immediately and seek emergency help.” GREAT, my emergency help is 40 miles away and unable to come rescue me. So, I did what any girl would do, drive to the nearest Wal*Mart. I bought oil and proceeded to the parking lot to change it. By the way, I’m sweating bullets because I was so hot. Ok, oil is changed and we are back on the road. Whew, what a fiasco. Connor and I were traveling at an inchworms speed because of something going on on I5 and I looked at the clock and it was time for a specific med that Connor needed, so just passed Boeing Field we found ourselves on the side of the freeway again giving meds to the tune of zooming cars and semi’s passing us by.

Once we arrived at Children’s Hospital everything was just fine and we were on our way once again. Then it was off to the berry fields. Oh yes, we did not thwart our plans. We were making jam one way or the other. Connor screamed the whole time we were in line to pay for our berries and then once we got in the car he seemed to get his personality back and he talked and cooed the whole way home.

We survived the day and the jam got finished, but boy did it come with a lot of drama. Hope that helped pick you up from whatever doldrums you’ve been in today. I’m so glad I can laugh at our hilarious escapades!!!

Lovebug Hugs,
Lori

Back at home and very slow to Blog!!!

Hello all you bloggers....Dad here..and yes we have definitly slowed down on the blogging as you can see! In the past Lori has done most of the posts but Mama's pretty busy this time of year...making 104 tubs of freezer jam...dinners...appointments....taking care of me and littlebug...and the list goes on...she's a busy lady.

So when I checked out the blog this morning and saw the last post on 6 Jul....I figured I better give a little update so here goes an update blog from good ole Pop (remember I'm not the writer in the family so bear with me OK).

Connor is doing quite well for where he's at in life...still needing his heart repaired but overall he is gaining weight and looking very good. He even has baby fat around his knees now.....you know...the kind you just have to squeeze and pinch...he actually loves it! Last check he was on his way to 12 lbs!!!!!!!!! And Lori and I can both tell he';s getting fatter because he's getting to be tough to cart around in his car seat..its heavy...but good for the bicep workout!

September is still looking good for the heart repair. Lori and I saw the doc the other day and he seems to be onboard with the first part of September....that's good news.

Connor's PA band is not working the best yet because he needs to grow in to it and doesn't appearing to be doing that fast enough. So Dr Steffinelli put him on another med to regulate the pressure in the lungs.

And one last thing is or should I say "end" thing is Littlebugs little "bum"......I know I know....who would have ever thought of it....Randy talking about my little babies butt.....but here goes....he's got a rash that has been pretty bad so we took him in and the doc's say he may have a "milk protein allergy"....the worse part is he may not able to use Mama's milk any more.......that has been especially difficult for Lori so if anything pray for Lori to be at peace with this new twist in Connor's life. Lori is a fantastic Mommy and only wants the best for her baby so she worked very hard to see that she pumped religiously eveyday to make sure Connor had plenty of breast milk.....and now this upset!!!!!!! Please pray that he doesn't have this allergy and can stay on the good stuff...Mommy's milk!!!!

I hope this little update helps. We'll try to be better, but we are also having fun with our littlebug at home too......walks and stroller rides and rocking on the back porch. As for me....Daddy...I can truely say its so nice to have my family home!

Love Randy, Lori and ....lovebug hugs from Littlebug!!!!!

Dad is back home again!!!!!!!

Lori and Connor 6 July 2006

Yes Dad is finally home! It is such a great feeling to be safe in the arms of the ones I love…. And what a homecoming it was….holding my son in my arms, hugging and kissing my wife again….its good to be home! I can’t even explain it with words.

But I can tell you how proud I am to have such a beautiful wife and a fantastic son. Lori thank you for your steadfast love and devotion to myself and Connor, without you I don’t know where we’d be.

I look at the world and see turmoil and strife in families and I’m so glad I have you Lori as my wife…you are the one who sets my heart at ease and the one who brings peace and tranquility into my life and our home….what a jewel you are to me….I’m so glad you are my wife! And to Connor…I don’t think he knows it yet….I keep trying to tell him how blessed he is to have a Mommy like you….he got the best the world has to offer! (me too) Someday he’ll realize it but for now I’ll just keep reminding him how lucky he has it.

It’s a little after 5am and as I sit at my desk I’m reminded of how blessed I truly am…..a picture of Connor kissing me….my Father’s Day CD….my parent pass from Children’s Hospital….my Happy Father’s day picture book…the book “I’ll wait right here”…….lots of love notes from Lori…..and Littlebugs letter to Daddy on the 4th of July.

I just got through rereading “Connor’s letter to Daddy on his 1st 4th of July”…..I had to stop and wipe the tears from my eyes so I could continue to read. Having just returned from countries like Iraq and Afghanistan, I know the true meaning of freedom and its true… freedom is not free…its born out of the sacrifice of many willing to give their life to secure it and preserve it….never take freedom for granted for if you do you will soon lose it! And if you don’t believe me take a trip overseas with me! Remember what Psalm 33:12 says….”Blessed is the nation whose God is the Lord.”

So Connor….you may ask someday why I do what I do…….I do it to make sure you live in freedom....and it’s worth the sacrifice.

All my love to you both….my beautiful wife Lori and my son Connor
Randy….and Dad!

Happy 4th of July!!!

I'm a little flirt with my mama.....I'm even starting to smile back at her just a little bit.


Little Bug is an "All American Boy" as you can see!!!!


Mama and Little Bug before going outside to light sparklers!!!


Yippee......Little Bug and his first holiday at home!!!! We enjoyed lighting off sparklers on the back porch. We saved a few so we can light more off with daddy tomorrow night!!!


Ooooops....I'm starting to get sleepy. All this celebrating is tiring for a Little Bug like me!!!! I think I'm gonna rest my eyes in my swing. Wake me up when the big fireworks start!!!


Mama says I'm quite the Little Firecracker!!!! I'm pooped from such a fun day. This Little Firecracker needs to say nighty night and God Bless America!!!!

A letter to my dad on my first 4th of July!!!

Hi Dad,

It's my very first Independence Day!!!! I know it must be a really special day because mom's putting out decorations in red, white and blue and she's making lots of good BBQ food. Mom's really funny dad, she's been singing patriotic songs to me for the past couple of days, but today she woke up singing "I'm Proud To Be An American"! We were dancing around the deck and having a grand ol' time but then her eyes got all filled up with tears. She whispered in my ear, "I sure do miss daddy today." I had to agree, I miss you today too dad.

I've been getting quite an education for the last couple of days. Mom's been telling me all about something called Freedom. She says that there are lots of people that sacrifice a lot of things so that we can be "Free". And guess what dad, you're one of those people. Mom told me all about how you are a Lieutenant Colonel in the United States Air Force. WOW Dad, that's impressive. I know I'm only 5 1/2 months old, but I know that's a really big deal. You've worked really hard for the last 22 years to be where you are today. Mom says you've flown so many different airplanes while you've been in the Air Force and that you love each and every one. I think she said that you like the small ones best, like the T-38 that you were an instructor pilot on, because they go really fast and you can do something called aileron rolls. Mom says you love doing dare devil stuff like that for fun. Whee........maybe someday you can take me on a thrill ride!!!

I wanted to thank you so much dad for the sacrifices you make to allow us to be free. You have to go away a lot on your airplane and be away from home and I know that must be so hard for you. When you are gone on those long trips you fly your airplane into enemy territory sometimes and I know that you have seen a lot of scary stuff. You've struggled through extreme heat and slept in tents and barracks and gone to places that most people have never even heard of. Thanks for showing such incredible bravery dad, you are my hero!!! Mom tells me that you fly the big C-17 planes that deliver supplies, tanks, machinery and troops overseas. That's a big responsibility dad. I appreciate all that you do to make sure our troops are well fed, warm & clean and supplied with all the artillery that they need. Mom says you even get to pick up the troops and bring them back home to their families. That must be the funnest mission to fly because you know you're making them sooooo happy. I hear that you even get to support the President of the United States when he is over in places unknown. Mom says you even got to transport his limo one time!!! Hee Hee. I bet one of these days you might even get to meet our Commander in Chief!!! Mom told me also about the time you got to meet Dr. Condoleezza Rice. I think that's pretty impressive dad. I know it's not all about the people you meet, but these are people who are fighting for our freedom as well and you have had a chance to support their efforts. I just want it to go on the record that I think that's great.

Mom also tells me that you've seen a lot of things that make you sad. She told me about the time that you transported some fallen soldiers back to their home state with flags draped around them. There must be no greater honor for you than to salute those fallen solders in thanks for what they have done for all of us. Dad, I'm proud of you. You have chosen a most worthy career and I want you to know that I notice every single bit of pride that you have to be in the United States Air Force. As mom has been teaching me about freedom, the one thing she keeps saying over and over again is that "Freedom is not Free." We have to pay a high price to walk in confidence that we are free and she tells me that our military and their families pay the greatest price. I want you to know dad, that you reward in working so hard for our freedom is that I will grow up knowing what you have done for me and for our whole family. I can't wait to grow up and learn more about our presidents and our forefathers who have labored for hundreds of years to make sure that our great land is protected. Mom even says that we will take a family trip some day to see a lot of the historical places that are anchors of our freedom. That will be a fun adventure, dad. I can't wait.

I understand that I will be amazed later on tonight with something that mom calls fireworks. She says they're just beautiful and they light up the sky with shouts of jubilation. I hope I can stay awake long enough to see some of the spectacular colors. Perhaps Mom will even let me hold my first sparkler. I think she's planning on it, but we have to wait until dark to get good pictures.


On this 4th of July I want you to know that I appreciate you dad. Even today you are away serving with your squadron overseas. Please be safe and know that we are proud of you!! Thanks for serving our country, for serving God and for serving our family. I salute you, Dad!!!!!!!!! I can't wait to grow up in this great land we call the United States of America!!!!!

Happy Independence Day Dad. I love you as big as all those fireworks I'm gonna see tonight!!! Well, "Off we go, into the wild blue yonder......." Mom says that's your Air Force song!!! I like it!!

Lovebug Hugs,
Your Son, Connor

I miss you daddy!!!!!

Me and Daddy having some snuggle time..... How do you like my Elvis impression lips...."Thank You, Thank You Very Much"!!!! Hee Hee :-)


Hey Dad, your nose looks pretty tempting.....maybe I should take a bite....Ok, I won't bite you, I'll just nuzzle in close so I can feel you breathe!!! I love you daddy!!!


Me and Daddy in the airplane wing of Children's Hospital!!! That's a super cool plane on the wall, but my Daddy flys bigger plane's than that!!!! In fact, he is in one of those big airplanes right now on his way to Germany. Be safe when you fly Daddy. I can't wait to have you home at the end of the week. We miss you!!! Oh yeah, and Abbey wanted me to tell you that she's looking forward to your return too. She likes going on walks with me and mama, but she says mama throws that bumper like a girl and she misses the way you throw it to her and tell her to "fetch it up!" Plus, Abbey needs a bath and mama's too embarrassed to bring the shampoo with her down to the pond. Come back soon Daddy, we're fallin' apart without you!!!! Just kidding, we're doing great!!!

5 1/2 Hours Later.......

Our G-tube tragedy is history......We spent 5 1/2 hours up at Children's in the ER to no avail. Would you believe that after we got all the way up there, went through all the paperwork and initial assessment, the only interventional radiologist that they have is on vacation. So, they gave me an option of being admitted and waiting a couple of days until the IR doc returned or simply switching giving his meds through the J-port of his GJ-Tube. I'm sure you can guess which option I chose. We are back home again and everything is just fine.

The ER doc on call today was able to re-inflate the balloon that keeps the GJ-Tube in tact and that seems to have helped. If we still have problems, then I will switch the meds to the other port and go back to the hospital once the IR doc is back. While we were there in the ER, the nurse was able to suction out Little Bug's nose and lower throat area which relieved him of a lot of congestion, so all was not lost in our day trip to Children's.

On the way home Connor and I ran a couple of errands (one of which was Costco and Connor did great!!!) and now we are back home enjoying the back porch and the nice breeze. We heard from daddy by phone while we were at the hospital. He felt terrible that we were back there, but grateful it was only a short stay. He is still fighting off the terrible cold he left with and is very tired. He will be back with us at the end of the week and we can't wait!!!

Well, off to put away the Costco supplies and give Little Bug a cool bath. More from Little Bug's nest later, but for now...

Lovebug Hugs,
Lori

G-Tube is leaking!!!!!!!

Well, it's Sunday morning and Connor and I had a little snuggle time out on the back deck in the morning sun. It was great to listen to the birds sing and to cuddle my little bug. After coming inside to do our usual AM routine with meds and feeding bag changes and so on I noticed an orange glow coming from Little Bug's G-Tube site. Sure enough, I opened up his clothes to find the dressing completely soaked with all of his morning meds and a constant drip of stomach acids. So, I called the doc and he said, "Well, it looks like you're going back to Children's ER today!!!" My heart sank. Why can't we stay away from that place. I mean c'mon, we love everyone up there, but we want to stay at home!!!! UUUGGGGHHHHHHH!!!!!!!!!!

So, I just got the beds made, the dog fed, the lawn and flowers watered and now it's off to the ER. I will hopefully keep you posted this afternoon or evening on how our day went. Hopefully, this will just be a day trip and there will be no overnight required!!!

Lovebug Hugs,
Lori