--Everything, "All's Quiet"
I'm sorry we have left you dangling all day, but there really hasn't been much to report. Overall, that's good. Jay's rhythm is still spot on normal. His heart is continuing to contract a little. You can still see his little heart beating. He still alternates between sleeping and moving his arms and feet around a bit.
The downside is there isn't any great news to report either. We were all hoping for a similar improvement to what we saw yesterday. Unfortunately, if there has been any improvement, it is minor (and it depends on which of his 284 doctors and 153 nurses you ask).
Several of his doctors are pointing to tomorrow as the Big Day in which they hope to see some improvement. He will have been on ECMO for 5 days tomorrow night. The goal was to have him off ECMO by day 7, and to do that, they will need to start weaning him off pretty soon.
Tomorrow they will perform another echo (ultrasound of the heart) to look at how well it is contracting, and then decide if they can try to decrease his support from the ECMO machine. We're praying, crossing our fingers, and rubbing our lucky pennies that his heart is stronger tomorrow.
In other not-so-hot news, Luke is still fighting a nasty cold with a hacking cough, which everyone assumes is a rhinovirus. Awesome. He's eating well, has no fever, and is generally happy ... though JenB/Lisa/Crystal/Melissa might see that differently after the all night cranky party they got to enjoy with him. We're keeping him far from Jay, and making sure everyone who's been at the hotel changes clothes & washes hands before coming to see Jay. We haven't taken him to a doctor (we've seen enough of them lately!) but we hear that the ER here at CHOP has an urgent care level, so we'll probably do that if he isn't improving significantly in the next day or so. Cause we need some more medical bills from CHOP.
Thanks again for all of your prayers. This room is getting a little cozy, we're all tense, and we're running low on positive attitude. Your comments and your support are little moments of sunshine in our days.
24 comments:
Thinking of you and your family today in church. I put a prayer request out there for Jay at church and sent a note to my Women in Faith group also (my sustainers, if you will!). Keep the faith! Sending good thoughts that tomorrow will be a good day...
Hugs,
Neva M
Maybe make you smile: I vaguely remember a time long, long ago when two bodies in a twin bed was exciting!
You're constantly in my thoughts and prayers. I hope Jay passes his heart test tomorrow-wish to goodness I could send him the answer key!
Love you all,
Annie
I am really relieved that Jay has had a steady rhythm all day. That is great news. We are still praying for him. I will also pray for little Luke. Colds are a pain, but especially when you need to keep Jay so germ free. Eight days ago little Corinne had a fever of 104 and it did not break for 6 days. On the 4th day she was diagnosed with croup. So these little colds can turn into really bad things with babies. I will pray that little Luke has an easier time. We are with you and your whole family in spirit, but will keep our germs in NC.
Dee and Bob
You all continue to be in our hearts and prayers. I can't believe that Luke is sick at the same time. I hope he gets over that quickly.
Good luck tomorrow. Jay is obviously quite the fighter.
Sean and Cindy Toomey
Thinking of you guys and missing seeing you smilin faces at church but I hear you had some great visitors to keep you smiing over the weekend. We are praying for you and sending you happy happy happy thougths. Payton said we should sing a song to make you happy and the song should be the silly happy song ..."Happy Happy Joy Joy Happy Happy Joy Joy Happy Happy Joy Joy Happy Happy Joy Joy Happy Happy Joy Joy Happy Happy Joy Joy Happy Happy Joy Joy Joy!
Luv HUGS and Prayers you way!
You are a wonderful parents and you are doing everything in your power to make Jay better. Your dedication during such difficulty is admired by many, I'm sure. Stay Strong and know that you are all being lifted in prayer.
My little buddy is quite a fighter and I'm praying for dramatic improvement SOON! I'm counting on that big 'ol heart of his to be beating stronger tomorrow - LYTB, AJ
Jen and Derek - Know that your church family continues to pray for you constantly (along with many others I see on your blog) - in every church class, meeting and after church social event, your family is being lifted up. You are on the hearts and minds of many people. You are a strong and beautiful family ... tonight we offer thanks for how far Jay and you all have come, and prayers that tomorrow will be the day that Jay makes even bigger strides in his healing and recovery. In the meantime, prayers for you two to have the strength to keep going day by day. And when your strength fails, remember that is when God's power is made perfect. 2 Corinthians 12:9: "My grace is all you need. My power works best in weakness." Love, Mallory & Chuck (FBC)
Jen and family, i am thinking of you guys constantly and sending you so many positive thoughts. I've been focusing all my healing thoughts and prayers on jay, but i will start sending them to luke too. thanks for keeping us posted!
Hi Jen and Derek,
You all have been on my mind and in my prayers for the whole week. I'll pray for a positive result tomorrow, Maybe that will be the turning point for Jay and it will be all smooth sailing from now on out,
God bless all of you,
Nancy Kiltie
Hey guys,
We've been checking your blog daily so that we can pray for your specific needs as they come.
Becky Bower
Well, since you seem to be needing a smile today, I will share with you what I saw on the auto shop sign as I was driving today: "Free food for Jesus"
Does Jesus eat at the auto shop?!?! He likes a good plate of transmission oil with his okra? And what about the rest of us?
I almost had to stop by the auto shop because I nearly wrecked my car while laughing at that one. Maybe that's their plan...
Anyway, hope that brought a small smile. Will continue to pray and send healing thoughts to both the kiddos, and more strength to you and Derek. "Strong heart tomorrow, strong heart tomorrow..."
I imagine Jay's big little heart healing cell by cell, moment by moment, in the way that only God can see. We are looking forward to the day you start your blog with U2's "It's a beautiful day..."
Before leaving for the beach today, we took our Virgin Mary candle across the street to Amanda and Rob Holiday's house, who will tend it this week, with promises from their 3-year-old Hannah that she will "pray to Jesus to take care of the little boy." Now enveloped in the peace of this beautiful place here, we have lit a candle of St. Jude, patron saint of hospitals and of difficult cases - with each glance at it a prayer goes up for our precious Jay. How much we wish you were with here with us.
May God's peace surround you. - Gabby
I cannot began to understand what you are going through.I'm constantly in prayer for little Jay and all of you.I feel like god's angels have gathered around Jay and are protecting him until his little heart gets stronger.There are so many prayers being lifted up for all of you that God will keep you in his care.I will be praying for Luke also.United prayer is powerful and you have that from everywhere. Tell Jane Hi and i love all of you.June
I just got the address to this Blog from Ali .
We are keeping little Jay and your family in our thoughts and hoping for a speedy healing and recovery.
Much Love
Birgit & Nicholas Capucille
Hi Jen,
Hoping Jay is doing better today and Luke had a good night's rest. You and Derek are amazing. Keep God's faith and His strength close at hand.
Loves~Loves~Loves
Susie
PS I hope you know so many of us are so very very very grateful that you take the time out to keep us up to date on you and yours! I have to admit I check your blog and my email and if I HAAAAD a Facebook account I would be checking it a zillion times a day too!
The pre-school suite was full of parents talking, thinking and praying for you yesterday. We missed Luke in the nursery! Take heart, be strong and know that God's hands are there to support you every second. I pray that Jay's "new and imporved" heart will soon be strong and stable enough to do what it's meant to do-unaided!
It hsa to be incredibly difficult for you both to maintian a positive attitude through this-- so prayers for you too!
Noel Morris
I couldn't keep tabs on you guys this weekend while at the beach but you were certainly in my prayers. Praying that today is THE day when Jay's little heart shows the doctors " look what I can do".
Praying for a quick end to Luke's cold and health and strength for these faithful, tired parents.
vickie
I'm not sure what more I can say after reading the other comments, but want to again assure you that you are in our thoughts and prayers constantly.
Grateful for the honesty that you share with us...makes it easier to know how to pray for you.
Give yourselves some big hugs and know how many of us wish that we could be there to do that in person.
--Cara Lynn
You guys are being remembered by so many. Just wait I bet Jay is just waiting to shine tomorrow. Praying for strength and fortitude for all of you guys. Thanks for sharing the ups and downs. We are all there in spirit.
Ginger
Jen and Derek,
I love reading the song lyrics in your blog. Yesterday's hymns and anthem kept turning my thoughts to you and Jay.
"We are travelers on a journey, fellow pilgrims on the road;
We are here to help each other, walk the mile and bear the load.
I will hold the Christ-light for you, in the night-time of your fear;
I will hold my hand out to you, speak the peace you long to hear.
I will weep when you are weeping; when you laugh, I’ll laugh with you;
I will share your joy and sorrow, till we’ve seen this journey through.
When we sing to God in heaven, we shall find such harmony;
Born of all we’ve known together, of Christ’s love and agony." (Richard Gillard)
Know that your FBC family is keeping you close in thought, praying that you sense God's loving presence through every step of this frigthening journey.
Mary Alice
Todd and Amanda Lockyer, Pastor and Mrs. Jim Brown and our church family will continue to uphold you in our prayers. We will pray much today for weaning process and that God strengthen Jay's heart. Praying so hard!! Love you both!
Jen, I am Ann Lawrance's sister in law in Wilmington. Ann has kept me up with Jay, and I have started reading your blogs, and have since shared with some of my friends,so....just wanted you to know that people you don't even know are praying for Jay, and thinking about your family!!!
Jen and all, wanted to let you know that our thoughts and prayers are with you. Jay is in good hands. Just keep believing everything will be fine and this, too, shall pass. Keep the faith! Thanks for all the blog updates and God bless you all. Take care.
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