Today was a good day, a hard day, a frustrating day, an angry day, a happy day, a sad day,...
all in one... It is such a paradox of emotions sometimes -- at any given moment...
emotions, thoughts, and things change.
This is life now.
The new normal.
Wake up,... feel like you just went to bed.
Try your best to maximize any time at all getting things done
that have to be done,... life things,.. banking, chores, blah blah blah...
Try and spend time with the boys that is both quality and quantity...
as much as quantity will allow...
Feel the frustration of them as you begin the process of getting ready
to leave for the hospital...
That one is particularly hard on us...
arrive about 50 minutes later to the hospital...
live in the perpetual NICU roller coaster up close and personal
for not only yourselves, but also for the community of those like you.
happiness. sadness. anger. unbelief. faith. fear.
Vitals pretty good. Blood gases, pretty good...
PDA valve - still open... murmer (spelling?) strong...
this is good, so far... means pda is small, but still - present
and making itself known.
Infections -- yes, I said infectionS... plural.
We are now taking 3 antibiotics...
This means there will always be a 3 day setback until we get 3 solid
days of negative blood cultures, we can't get his pik line (it is like a central line)
back in. They had to pull that because it was infected.
So, for now,.. Kyle gets stuck a lot with needles.
This really stinks for him.
Respiration: still desaturating alot. This leak is a real problem.
Despite of the fact that he has the best nurses ever, the leak is still
giving them all fits. He can go from 0% leak to 100% leak in any given day.
This, combined with the PDA makes oxygenation very difficult.
However, so far,... Kyle picks himself back up quickly.
On the positive note:
Kyle has many new girlfriends. He is already a little flirt.
He loves his nurses and so do we!
We share him with Brandi and MIsty for sure! They seem to be
very much smitten with him... Then again, so do so many others...
It is always so comforting to us to see so many of his nurses come around to
just look in on him and check to see how he is doing!
Dr. Lopez seems very hopeful for Kyle... she is so great, and His nurse practitioners
are amazing as well. We do not look forward to the rotation change. We really like
Kelly got to bathe him again tonight,... and help change his linens.
She got to change diapers today. We watched them carefully change his
tape on his tubes. Mostly, Kyle's vitals and all his numbers have been decent
from all the testing they do...
So, we continue to pray for Kyle's brain... for healing. We pray for protection
for his brain and for protection against further bleeding or PVL.
We pray for Kyle's lungs... That his respiration will get better, and he will stop
the desaturations. We pray for the RDS (respiratory distress syndrome) and BPD
(bronchial pulmonary displaysia) (I think that is what it is called)... to get better.
We pray for good growth and fast development.
We pray for his stomach that they can re-start feeds soon
and that he will digest well. We pray that God will protect Kyle from NEC.
We pray for the PDA to close itself,
and for the blood on his brain to re absorb cleanly, so not to obstruct
any spinal fluid/blood flow.
We pray that God will clear up infections and keep Kyle's cultures coming
back negative from infection so we can restart that line asap!
Thanks for praying. Thanks for encouragement.
Your comments and emails, etc are so encouraging to us.
We get home every night and read your emails, texts, and comments on the blogs.
That has become a lifeline for us over these past 3 weeks.
We can not say thank you enough.
Please pray for Kelly. She is in real need of God's assurance and peace.
blessings on you and yours --
- John and Kelly
- This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.