After we got all that great news yesterday, the NICU roller coaster is at it again. We have not gotten official results back from all different tests, but Kayleigh started to go downhill yesterday and quick! They have not idea why this happened and they are taking all measures to figure it out.
The only test that has come back yet is he RSV and that is negative. The ECHO showed Kayleigh's pulmonay pressures were elevated and her heart's right side was not functioning as strong as it normally is. The cardiologists are getting together for their weekly meeting on Thursday to determine whether or not to do another heart cath procedure to determine what is going on with her heart. Their fears are the heart may be causing this vicious cycle.
To explain what happened, yesterday Kayleigh was doing great and then all of the sudden, she was coughing, spitting up and having mucousy drainage out of her nose and trach. Her sats dropped quickly and they had to increase her oxygen and pulmonary pressures to get her sats in the right position. After a few hours of controlling her stability, she started to struggle again with the same problems.
The Gastroenterologist came in and felt like Kayleigh's liver and spline were enlarged, so they will be doing an ultrasound on those to determine what may be causing that. With problems rising and multiple tests being performed, hopefully the doctors find something soon.
Please stay close for updates and pray that whatever is causing this issue will be discovered and taken care of quickly. Please pray it has nothing to do with her heart and we can move on from the nightmares we had with her pulmonary pressures being high. Unfortunately, with all this going on, it does postpone the upcoming surgeries for this week.
Please pray for our sweet Kayleigh and I will update as soon as I hear something.
God Bless,
64 comments:
Praying for your sweet baby girl
I hope that they find out some answers for you soon. I am sorry to hear that the surgery is delayed again. I know from reading your blog that you so want your little girl at home where she belongs. You and your wife are very strong.
Praying for your sweet girl!
I recently found your blog, after having a sweet little girl 8 weeks early. Her name is also Kaylee. I'll be praying for you all, and I hope she gets to come home soon!
I'm praying and hoping. I ask for peace to be upon your whole family.
Much Love
Lindsay
I am so sorry!!! We are praying extra hard tonight!!!
Praying and will be watching for updates.
On our knees in Kansas and STILL wearing our bracelets!
You guys are still in my prayers daily - like you have been for the last 6 months!!
Keeping Kayleigh in my prayers everynight. It's terrible that so many new issues keep presenting themselves before a previous concern can be solved. Like I say everytime - your little fighter will keep fighting with your unwavering love and support and God's mercy. May she keep strong.
Hope you can find peace in waiting for the answers...praying for that sweet baby girl!
Freeman's:
I am praying hard for Kayleigh right now!!! This is so upsetting and aggravating to me to learn of this and I can only imagine what you two must be going through all so. I know God knows and we can't also see the whole picture but we have to trust that he knows best and keep our faith strong and know that this is in his will for her only to make her stronger and beat another thing. Please keep us updated as you can and she will show us all once again how strong she is and will come through this with flying colors. She may be trying to tell us all that she is just not ready for the next two procedures just yet, like we may be. Keep up the awesome faith you both have and we are here for you all the time.
Oh goodness. I'm so sorry to hear this. I will keep you all in my prayers tonight.
Two steps forward, one step back...she will get there, albeit slower than you'd like...but when does a kid ever cooperate?!
I am so sorry to hear of your set backs. I will be praying hard for Miss Kayleigh. Stay strong!
Praying for sweet baby Kayleigh Anne..she is a fighter...and you and Amiee are so strong in your faith...keep us all posted...GOD is good all the time...and all the time GOD is good!
Patricia
we spent 58 days in the NICU and i thought I wouldn't make it another day if they had kept her. i honestly cannot fathom what you are going through. my prayers are with you.
Praying in Texas for that sweet girl.
Kayleigh is in my thoughts!!
So sorry you are going through all this. It puts the first day at day care woes into perspective. God Bless your sweetie.
Oh no! I will be praying. I always do, but I will be sure to say a special prayer tonight. (((()))) You guys are amazing!
~Christa
www.quintooples.com
I was not expecting to hear this kind of news. My heart just breaks hearing it. You all continue to be in my thoughs and prayers.
Amy
Praying for her and YOU!
take a moment for yourself--the parents need rest too.
Praying for that precious girl.
Phyllis & Kristen
Still continuously praying for your little angel. She putting up a stink for some reason...I know she can come out of this with flying colors and we can get back on a good path. Keep your chins up, and plenty of xoxo's to Miss Kayleigh.
Goodness...sweet girl can't catch a break. Praying for her!!!!
My heart goes out to you tonight, I know how long you have been fighting to bring Kayleigh home! I hope that you get some answers soon and that these new issues are resolved quickly. I will pray for you tonight.
Kayleigh and your family are in my thoughts and prayers. Lean on God for strength. I pray that God guides the doctors. May God hold you and your family in the palm of his hand. God bless you all!
Still praying for you all and think of sweet Kayleigh often. I will focus my prayers on wisdom for the doctors to figure out what is going on.
lots of love from our family to yours!
Heather
Could it be a mucus plug in her trach causing the low sats? I will pray they find the answers to her problems. Have you checked into a second opinion at another hospital yet? It just seems this NICU team has run out of answers for Kayleigh's care or am I just mistaken? I hope so and will pray on this. Keep us posted Adam. We shall lift you in prayer as always.
GOD BLESS YOU KAYLEIGH!!!!
ERICA
MOMMY TO 2 BOYS
Loving you guys and praying REALLY hard from afar!!!!!
my prayers are with you all!
Kayleigh, you get better little girl. Lots of prayers.
praying for you all.
i was so sorry to read this today and i cannot imagine how you must be feeling. praying that kayleigh will be back up soon and on the road to coming home.
blessings.
Bless ya'lls hearts. Kayleigh is a fighter and she'll fight through this like she has in the past!
Continuing to keep kayleigh and you guys in our thoughts and prayers.
In Christ,
Rachel
Praying that God will strengthen you both, lay his hands on precious Kayleigh his perfect healing, and give wisdom to the medical staff...
((((((((hugs)))))))))
Staying close for updates. Prayers going out!
Praying for sweet little Kayleigh. Be strong little girl!
Praying for beautiful Kayleigh
Praying that Kayleigh will pull out of this. Keep strong.
It breaks my heart to hear this this morning, always thinking about you all! Lots of Love and Prayers coming your way!
Kristine
Exeter NH
(((((((( hugs ))))))) to you, your wife, and Kayleigh
Urgh! My heart dropped when I began to read your post. I am so sorry that things took a drastic turn, but I will pray with everything I got, that she will turn right back around again. She's done it before, she is a fighter!
Kayleigh is a part of God's perfect plan and we will never know at least not here....why God chose Kayleigh to endure all that she has and still is.
My prayers are that God will comfort you as you sit and wait for your precious child to heal.
Covering Kayleigh in prayer and hoping that she is comfortable as her fragile body recovers from yet another set back.
Thank you for sharing your angel with us. It is an honor for me to read about this amazing little girl and to storm the heavens above in prayer for her.
We never stop praying for all of you, sorry to hear the latest update, but our little sweetheart is strong. Leslie & boys in CT
We are praying very hard for your sweet girl here in Wisconsin. May God watch over you and your sweet one.
Still praying and praying hard!!
-Lori
o goodness miss kayleigh. i hope they find out what is going on like yesterday. poor baby. praying for you little sweetheart. until next update,
Praying for sweet Kayleigh. I sent Aimee a note on facebook...take care of each other. God bless.
So sorry to hear this. Your sweet little girl can not catch a break. All things are meant to be, but enough already. I will pray that this passes and they figure it out soon.
OMGoodness...I am so sorry she is going through this rough patch as if she hasn't been through enough already.
My prayers are with Kayleigh and your family!
C'mon Kayleigh! Pull through baby girl!
Kayleigh,
You just take your time and get better little one. You don't have to stirr things up again! We will wait patiently for you to get better, no rush! Just remember you have a million people praying for you! I know you will pull through. You always do!
Praying for you in Indiana,
Shelby, Jason, Kynzie, and Laila Hawkins
I just found your blog. My heart hurts hearing of the difficulties little Kayleigh and you as her parents face. You seem to be facing it all with tremendous courage and strength. You will be in my prayers.
I know the word 'scary' can't even begin to describe what each hurdle must feel like to you, but please know that we are all still reading and praying for you all. Hugs to you and your beautiful baby girl.
I was really hoping for an update on your little girl today, I hope the doctors have figured out what is hurting your baby. You guys are in my prayers.
I will keep you Kayleigh in my thoughts and prayers and I wish you the best that it dose not have to do anything with your heart. I will check back with you all later. God love Kayleigh. From Adrianna and Kim we love you very much
Oh Adam and Aimee, I am so sorry that you guys have to face another set back but know that our God is good no matter what and it is in his perfect timing and plan that Kayleigh will finally get to come home. I pray that the doctors and nurses find what is going on with Miss Kayleigh and fix it quickly so that she can once and for all come home where she belongs. Kayleigh is such a fighter and I know she will get over this quickly. I will continue to lift her up in prayer as well as your precious family.
May God Bless You,
Amber
Freeman's
How was Kayleigh's day yesterday, she was constantly on my heart and in my prayers and thoughts?
My thoughts and prayers are with you, your family, and your precious baby girl.
we are praying for your baby girl!!!
Laura Jeffcoat
Lamesa, TX
I'm not much of a pray-er, even when my own sweet son was in the NICU a prayer rarely came to my lips - just determination.
For some reason I just felt like you needed an extra prayer this morning. So I thought I would add my little voice.
Praying that your family has strength, peace and many, many happy days. May God always be with you.
Praying that God will strengthen Kayleigh. God Bless!
Post a Comment