The blood culture came back and showed that Kayleigh has a urinary tract infection which has caused her to spiral out of control. Yes, my daughter seems to be showing early signs of a "Drama Queen." Actually, I am sure a UTI on a preemie is much more intense and painful than it is on an adult. Being that she was still on Lasix, peeing on a regular basis may have been very very painful for her. I am clinching my legs together right now just thinking about it. If she was going to have any kind of infection though, this is the best one to have. They have started her on antibiotics and hope to see a change in her prognosis soon.
There are still a lot of questions because I just don't understand why it would cause Kayleigh's pulmonary pressures to get so high, unless she was in a ton of pain or discomfort causing her to clamp down and hold her breath. I have seen her bear down and stop breathing because of pain before, but she wasn't doing that this time around. That still doesn't explain why her breathing was so heavy and erratic the night before last. I am still a little confused, so hopefully we will get some more answers tomorrow.
My biggest fear through all of this was her heart and something was not working right in that department. The cardiologist that worked on Kayleigh came up to her bedside tonight while she was having an episode. He explained that all of her symptoms are not pointing in the direction of her heart, so that makes me breathe a sigh of relief. The scariest thing ever is when you have three neonantologist and a heart surgeon at Kayleigh's bedside and none of them can figure out what is going on. I am so glad that something came back quickly on the blood culture tests to clarify this problem.
Please continue to pray that this UTI is the only thing wrong with Kayleigh and it will be cleared up quickly so we can get back on track with our progress. I hope that we can all look back on this as a distant memory someday and forget how many heart attacks we all had this year. Kayleigh is certainly trying to get the "Best Actress" award in her movie.
Actually, it has crossed my mind several times that God has diverged his plan as to what was really wrong with Kayleigh because He heard all of our prayers today. What do you think??? Everything was much more serious than what it came out to be and all the doctors are completely stumped by what just happened.
Thank you all so much for your prayers, please keep them coming and hopefully this UTI is the only issue here. I will update you as soon as possible with more details.
God Bless,
The Freemans :)
42 comments:
Hoping and praying a simple UTI is the main cause for concern!!! I'm so glad they found something to treat! XOXO
Thank you so much Adam for providing an update. I am so glad they have found something. I sure the power of prayer is working. I'll keep sending those prayers for Kayleigh.
Thank you so much for your update. I decided to chrck again before I fed Sidney and went to bed, so I am very happy to hear what I am percieving as good news. We as always will continue to pray.
YAY! I don't doubt that it could be something simple that would cause a big issue. Think about how tiny her body is? I know that when my 15 lb 4 month old has a little gas, it's like the world is ending. She contorts and cries and spits up and coughs. Not to mention that little babes don't have the mechanisms to cope with or understand pain --- it must create systemic anxiety! Also, I think back to when I had a mystery virus. I went to see so many specialists and no one could figure me out. I spoke with an Asian gentleman at my nail salon who shook his head and said Western medicine doesn't understand that EVERYTHING is connected. The whole body must be taken into consideration when something is wrong. So, surely, a UTI in a little baby (one who just underwent MAJOR surgery among other things) could throw off other organs and functions.
Am hoping and praying for little Kayleigh!! She really deserves a little relief. Keep up the good work, parents!
Praying for God's healing hand to cover over your daughters body tonight as she sleeps. I am praying for peace for you and Aimee. I am also praying for release from the neck tension for you. I know these intense moments are rough on a body. I get real bad neck tension when I am terribly stressed. It stinks to say the least. Hopefully now you can breathe a little easier and let those shoulders drop some!
Blessings!
bri
Adam and Aimee,
I know lil' Kayleigh is not out of the woods, but I wanted to jump off my bed and say a cheer when I saw 'Problem solved' under my blog roll. We have been prayin' hard and pulling for you and your family. Y'all are such an inspiration to so many people. Even though I have two healthy children, you have taught me to count my blessings and live every day in awe of God and his Plan. Kayleigh is about 4 weeks older than my Emery, and tonight while putting her to bed, I just held tight to her while thinking of you guys.
I have to also admit, that I find myself checking the blog like every 10 minutes for an update lately...we are all rooting for you guys! Stay strong and know that y'all are truly role models to so many of us.
God Bless,
The Owens
Houston, Texas
Praying that it's just the UTI and there are no underlying issues at hand.
In Christ,
Rachel
I am so relieved for you. I can tell you with great experience in that department. Not only is our sweet Matthew in the NICU but I have also had 2 of my girls have kidney surgery to fix UTI's and when they get them the world is ending. They won't eat. They don't breath right. It just really tries to shut down their whole body. It seems crazy and it did to me too when they were going through it. Make sure they take a urine sample and check it for sensitivities. UTI's have specific antibiotics that won't work on them and this is the only way to make that happen. I hope she feels better by morning. Our prayers are with you.
I am so happy that you were able to post rather early tonight. I know that you guys are night owls!
I am soooo happy to hear that there is at least an answer and that this is something that can be fixed. I hate to hear that Kayleigh was in pain with this UTI but glad to hear that it is now being taken care of. Kayleigh's body is so small perhaps it just responds this way because it is what it able to do to display that something is wrong....
I think that this was god's plan...in a way. I think that everything was moving really fast and that perhaps the drs need to slow down and give Kayleigh a little more time to progress from step to step. I was talking to my Dear friend Jenn Campbell about this... HI JENN!... and we were thinking that AT LEAST this happened while Kayeigh was still at the hospital. Once she goes home that is where she needs to STAY!!
Hey did you guys get the angel care baby monitors for Kayleigh's room??? Look into them if you did not. There is an alarm that goes off if there is no movement in the crib for 15 seconds. And that includes breathing. I think that since you guys have had soooo much to worry about that this might give you one less stressor....
Oh and look for it online....Stay out of BABYs r us for now.... : ) We all want Kayleigh home..!
I am praying as ALWAYS for your whole family and I hope that now that we all know what is going on that they give Kayleigh her rest and get her better so you guys can finally bring her home!
Love,
Crystal in CT
Thanks for the good news before bed. Hopefully, this is all Kayleigh needs treated now and she can be home soon. Will keep up the prayers for your family and little Kayleigh. Thanks for the many updates today. I have found myself looking every half hour to see if something new has posted to find out that she is okay. You are doing a great job not only on the blog but also as parents to this little miracle baby. Take care.
I just wanted to point out something you said Adam... her BLOOD cultures showed a URINARY infection. Clearly her body was working so hard to fight it off that it went into her blood stream. UTI's in babies and elderly are very tricky... they take longer to diagnose and thus cause an entire body response. Or God changed his mind when he heard us all pray.... Whatever, I can't wait for her to get better! I agree with a response above though, maybe she needed to tell everyone that she is still fragile and needs a little more time to get strong. You do NOT want her home too early, happened to us... turned out ok but we were back in the hospital :( And I am sure your drama queen will come home on a monitor, so don't stress, you'll always know she's ok! Still praying like crazy here in KC! ps... get a couples massage for you and Aimeee, will help your neck and be good for you two to relax!
Thank you Jesus, That they found the problem! I know how bad a UTI can be I had one when I was 5 months pregant with my son! I really feel that Kayleigh is going to be just fine and one day she'll look at all this and be totally amazed at everything that she went though! You two are awesome parents keep up the great work! Take it from a mom of an 11 year old boy things don't get easier!
Always in my prayer,
Alanya
Praise God! I've been praying for Kayleigh on and off all day today and wanted to check for an update before heading to bed. We'll keep on praying!
Great news! Still praying for Kayleigh--but glad that a solution is in sight!
Please post some more pics so we can watch her grow some more! It's been seven posts since her last pic! :)
Praying in Birmingham!
I'm so glad they found something to treat as well. Thanks for an update. I've been thinking of her and had to get up and quickly check.
Praying it's just the UTI and she starts to feel much better today!
God is listening. God is good. God is sovereign.
Yaaay Iam glad it something small and easy to fix. I hope you get all your questions answered today!!
You don't know me, but I happened to find your blog through another heart baby. I read some posts from the beginning and I felt like I was reading my own story.
I too was pregnant with a peanut. She suffered from extreme IUGR, absent blood flow from her cord, and extremely low amniotic fluid. I was put on horrible medication to help with her blood flow and was hospitalized for a month prior to delivery. We were also told that she wouldn't survive.
Just wanted to let you know that she's still a peanut, but she's a strong 5-year old peanut! She's completely caught up in her development and she's small, but mighty! These IUGR girls are tough little cookies. I'll be praying for little Kayleigh and your whole family.
Aimee Gillespie
Michigan
PRAISE THE LORD!! That is just what I need to hear first thing this morning! I am so glad that it is a small problem...I know God heard our prayers and acted swiftly to protect little Kayleigh! Hang in there...this will one day be a distant memory! Still praying,
Jamey, Leslie, Isaac, and Emma Claire
Thank God. I prayed so hard last night! I agree with the PP that said something small like a UTI could bother her so since she is so small. Kayleigh is a true fighter. I will continue to pray for all of you.
Christine - NYC
So glad to hear that the docs found a cause in the UTI! Will continue to pray for this sweet fighter of a girl! Lord, please carry Kayleigh quickly thru her recovery from this UTI and sustain her strong parents as well! In Jesus's name, Amen.
Mel- Oklahoma
Praise God that this is not something more!!! Still praying for sweet sweet Kayleigh in MS
~Ellie (NICU grad 91), little sis Mercy Kate (NICU grad 06) & litle brother Josiah (NICU grad 08)
Hang in there Kayleigh!! You're so strong mama!!
Way to go for letting those Dr's know you were in pain!
I hope they can ease your pain so you can rest up comfortably!!
you've got SOOO much cool stuff waiting at home for youuu!!
Thank you so much for the update Adam!!
I've been thinking about yall allll week long.
<3
I was so happy to read that there was a reason for this episode and now Kayleigh is being treated.
I am sure you all wonder why you have been chosen to take this incredible journey. You are God's messengers to teach us all about the power of prayer and faith.
God please wrap your loving arms around Kayleigh and her family and them safe. It is not time for Kayleigh to be with you, but with her loving family. Please continue to share this miracle with us as Kayleigh continues to grow to a blessed child of God. Dear God, It is not time for her to come home to you, but it is time for her to go home with her loving family. Let them continue to teach us the power of prayer and the lesson of faith in prayer.
Amen!
JMR
Adam and Aimee thank you for the update. I was able to view it once I got to work last night. It eased me ALOT. At least we know that a UTI can be treated and once it is gone she will be back to herself again. It was just another way of her saying "Wait dad and mom one more hurdle and then I will come home. I don't want you to worry about me so far from the hospital!" She will be home in no time.
I know that my grandmother came home from the hospital on a catheter and she ended up getting a bad bacterial UTI and hospice couldn't figure out what happened until the tested the culture and found out it is a communicable disease that is only caught in a hospital! So I think that it could be from her catheter and then the lasix added to the irritation with the frequency of output.
Keep posting you guys because to be honest I go almost insane if I don't hear something. I check the blog sometimes 30 or 40 times a day until I see something. I even check it from my PDA so I can keep up with everything while I am away from a computer.
Prayers will keep coming.
Much love and hugs
Jenn
Adam and Aimee,
I know first hand that a bad UTI can affect your whole body. I have had several that were so bad that I had to be hospitalized. I have also had four babies. I would much rather go through the pain of childbirth with no drugs again than one of those UTI's. The doctors were also confused as to why this affected my breathing and heartrate. I would hold my breath or I would take much deeper, faster breaths than usual, after a while of doing this my heart would be racing. I was able to talk though so I could tell them that it was my only way to deal with the pain. It really felt like I had no control over it, because they would tell me I had to stop but even when I tried not to I would be doing this again in a matter of minutes. I also didn't like any movement or noise near me and couldn't handle being touched. I had several of these as a child and I can remember them asking me several questions about why I was breathing like that and also doing several tests that all came back normal. Then as a teenager when it happened I was able to realize that it was a response to my pain. I know it is so hard to think of your daughter in so much pain but at the same time I thought you might like to hear from someone who has experienced this. Not all UTI's hurt like this but some are so much more severe and some people have so much more pain than others. I will be praying for you more than ever today Kayleigh ! The antibiotics will work quickly, and the pain will ease. You are such a fighter ! Mommy and Daddy better watch out, if she is this strong now wait until she is 2 !!!!
Take Care Adam and Aimee !
Karen Smith
Calgary, AB
Oh what a relief! I hope the UTI is the answer and she is feeling a little better this morning. We are still praying!
We are praying for all of you! I have been following your blog but this is the first time I have commented but I figured now was the time to let you know there is yet another fan of gorgeous, little Kayleigh out there! My fingers (and toes!) are crossed that the UTI is the only issue. Hang in there!
What great news! Our family has been praying for you guys and your little Kayleigh and our hearts were really aching to hear the latest.
I really think God is sovereign and that He used our prayers to carry out his original will.
My wife Kelly and I are going to try to send a pic of our preemie twins Kanah and Grace with a picture of Kayleigh on a laptop. Hope to send that to you soon.
Blessings to you guys. Jason
What great news (well kinda, poor Kayleigh!) I can definately tell you from personal history that UTIs are HORRIBLE! They are extremely painful and I can definately see why it affected her entire body! The good thing about them is that when you get treatment you start to feel better quickly.
My daughter had one at 16 months old. I brought the urine to the lab on a Friday afternoon and asked atleast 5 times if they would be sure to notify me even though the doctor's office was closed. I was assured they would. I never heard anything so figured it was negitive. Come Monday morning the nurse called from my doctor's office to see how Maggie was doing and make sure the meds were working. I was dumbfounded because that was the first I heard of the results! I was sooooooo beyond angry! It helped that I have a history and know how bad they feel. The excuse was that there wasn't STAT written on the order so it just went in the "other pile" for the doctor to see on Monday. Well, because of this The policy at the lab has been changed so no other little one will have something like this happen again. Now if it is a child, no matter what, any negitive result of a test is called into the doctor on call immediately. So although my little one suffered hopefully it will never happen again.
Well that was a long story! :)
I am still praying for you all!
With love from Southern NH!
I prayed for lil Kayleigh last night before I went to bed. I am so happy to hear the good news that they found what was wrong. Well Mostly anyways. I remember when my poor little Natalie had diaper rash sooo bad because of non-stop diarrhea for days on end. When I would go to wipe her butt, she would gasp for air because it would hurt so bad! Poor little Kayleigh. I sure hope and pray all these struggles are near an end for you and Amy and Kayleigh as well. As the old saying goes "What doesn't kill you only makes you stronger", you two must be like the strongest people on the planet by now! I just cannot believe the strength you and Amy have had through this extremely rough journey. I pray the beginning of new life at home comes soon! Take Care,
Alicia
Praying furiously!
I have followed your story since you first posted on Baby Center. You have an amazing beautiful little girl and I think of her everyday. She is one tough cookie. My thoughts and prayers are with you always. Jess
God bless your family. Glad Kayleigh is doing better and hopefully it was just the UTI.
just caught up after a week on being off line....how your hours must have been dragging. we are keeping all of you in our prayers. Uncle John and Judi.
Hey Guys - Angela and I continue to pray for Kayleigh and all of you. We've been down your road a bit with our older son and know that you are handling the stress very well. Indeed we will continue praying.
Pete & Angela Northern (Parker's grandparents)
Praying for you and your little one in South Carolina.
Praying for you little one.
Here is a comment that will benefit all that read your board. There is a "UTI natural cure" that I know of and it WORKS. There is this powder called D-Mannose Powder. It works on E. Coli (different E. Coli that's in food) UTI infections which apparently MOST UTI's are E.Coli infections.
I took D-Mannose Powder INSTEAD of an antibiotic for 7 days. You take a bit (it says how much on the container) and mix it with a bit of water. Down the hatch and it sticks itself to the bacteria. Then when you use the bathroom ... the bacteria comes out of you and into the toilet.
All I can do is pray for you guys! I have no words, except stay strong!!
Prayers for all of you. I hope the UTI is all cleared up and you can bring your daughter home. I have been following you guys for several weeks. Tears are currently rolling down my face for all of you. No parent should have to watch their baby stop breathing because she is in so much pain. I hope you never experience that again. Many prayers and much love from another Re/Max agent in Georgia!
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