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
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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.
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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