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