10/28/08 - Hanging Tight!

First of all, stop for a second and just look at all that mess in the second photo! If you could only hear how bad it looks. There are alarms and chimes just going off as Kayleigh dropped her sats more and more today. They have no idea why, other than the fact that she is irritated with the vent being down her throat, her never ending pricks for blood gas tests today, her swollen cath leg issues, her huge PVC line sutured in her other leg, a infected suture coming out of her gastrointestial surgery scar, a hernia they found in her pelvic area that will be needing attention later, no 50ml bottle feeds anymore, dry tongue, eye boogers galore, non stop wet diapers from IV fluids, no snuggling allowed from Mom or Dad, no peace and quiet from all the dinging machines, and the constant sedatives which scares anyone who wakes up not knowing what the hell just hit them. What do you think? Almost every single time, the nurse would have to bag (manually oxygenate) her to bring her back up. For most of you who have never been in the NICU, this is the true meaning of stress.

On a good note, other than her sats dropping over and over, Kayleigh is recovering from her cath episode pretty well. Her blood pressure issue has dropped to a normal level, her nitric oxide is down to 2ppm, and her cath leg is starting to look a normal shade of pink. The heart surgeon came in today and was very impressed with her stats as a whole. He understood her sats dropping, as he said it is normal when she freaks out, the hole in her heart is shunting blood to the wrong side, causing non-oxygenated blood to be pushed out to the body. Once that is fixed and she is irritated by the smallest things, that won't be happening anymore.

Tomorrow they have a CT scan to make sure her head checks out with no major problems. Being that her blood pressure came down, they don't think they will find anything wrong, but they want to be positive before she goes in to surgery. Now we are not 100% sure, but the surgeon hinted that if she continues to check everything off her list this week, she may go in to surgery sooner. We are not positive, but we will be sure to let you know if that happens. We know they are really worried about this window of opportunity. If we wait too long, her lung pressure might never come down after closing the hole and she would die of heart failure. That is NOT going to happen though! So if she is good to go to surgery, then let's get this show on the road.

As the days go by, we are more and more confident about the open heart surgery. Aimee and I don't know what it is, but we have a gut feeling (which has always been right) that she is going to kick butt through this, shock everyone once again and be on her quick route home. Although, they are expecting us to be in the CVICU for two weeks, NICU for a few weeks and NPCU for a few weeks. That is the goal and we are NOT going to have any more set backs after this! GOT IT?? If you've read Kayleigh's entire story, you will understand where I am coming from on this. There has just been one too many set backs. I can't believe just last week, we were one foot out the door and now we have the biggest test of all.

Aimee and I are just blown away from all the responses we are getting on FaceBook and people creating prayer lists. All I can say is THANK YOU! It touches me deeply that we are all in this together. Kayleigh is a fighter and she is going show everyone how strong she really is. I know deep down in my heart, that with prayer, anything can be done. Please keep praying hard and joining together for Kayleigh. We can't wait for the day that we can show her all the wonderful people who loved her so much. She is so blessed to have every single one of you in her life fighting with her ever step of the way.

Whether surgery comes later this week or in to next week, my biggest prayer request continues to be that Kayleigh will recover 100% (and then some) from this previous battle before she goes in to her open heart surgery.

Thank you all so very much for your support!

God Bless,

The Freemans :)


Anonymous said...

Kayleigh is a trooper and she has shocked us over and over. She likes to keep us on our toes. She is a fighter and she is gonna do wonderful through this surgery. It's amazing the people that are pulling together and praying for your little miracle.
Still Praying for your Princess,
Nikki Conway

Kira said...

God's not ready for THIS angel yet!

Love and prayers, little Kayleigh!

Anonymous said...

You both continue to amaze me...just like Kayleigh. You always seem to find the positive in any situation, I hope she continues to give you many more positives than negatives. God give you ease from stress, and help this little baby get stronger and stronger, continue to help the hospital staff give the best care possible to our girl. Many prayers, Leslie Johnson & Family

Anonymous said...

Throughtout the day and every time I wake up during the night, I stop and pray for my granddaughter, Morgan Kate and for Kayleigh. These two little girls are amazing and such fighters! I look forward to both of their homecomings! May you continue to feel God's presence and His peace.
Kathy from Orangeburg, SC

Lindsey Wolfe said...

My little guy was a NICU baby as well, granted not to the extreme that your little angel has been through. But I know exactly what you mean with the alarms and beeps and your stomach flip flopping every time something goes off. Kayleigh has been in our prayers and will continue to be. God Bless!

Anonymous said...

I have been following your story for some time now and I'd just like to say: Kayleigh and your whole family are always on my mind and in my heart,and in my prayers.

God Bless

stephanie said...

I can't imagine the stress you guys are under. It already seemed like too much, but you've been amazing parents and your faith is inspiring. We've been praying for you all. My 4 year old now recognizes Kayleigh's hand at the top of your page and when I bring it up, she makes me stop so she can look at it and tells me she has to say a prayer for that baby.

God is in control! I am praying that he gives you peace and strength as you go through this with Kayleigh. She is an awesome little life!

Anonymous said...

Hey Guys,

You don't know me & I don't even remember how I came upon your blog, but I've been following Kayleigh's story and praying for her & you & Aimee for weeks.
I'm not usually one to sign someone's blog, but I want to give you some words of encouragement. My son was born 6 weeks early due to me developing HELPP Syndrome (extreme severe case of what Aimee had). He weighed 4 lbs, but had a very serious congenital heart disease. He needed a valve from another baby to repair his heart. A donor could not be found because of his size. Time was running out and they told me my baby was going to die. I began to pray like I've never prayed before in my life. 2 days later a donor became available, which brought about all kinds of emotions, but I know that God was in control just as he had been since my little boy was born. My son had open heart surgery to repair his heart at 4 weeks old and weighed a little less than 4 lbs. We were told his chances of surviving the surgery weren't all that great because he too had become very unstable and sick right before his surgery. He not only survived his surgery, he came through it w/ flying colors! He's an amazing healthy little boy now. My message to you is DO NOT GIVE UP! Keep your faith in God and know that through him all things are possible. I know what you mean about being in the NICU w/ all the different sounds and how stressful it is to see your precious baby destat and suffer through the sticks and surgeries and one obstacle after another. Just love her, love her, love her. She will pull through this and then you will cherish her for the rest of your days.
I leave you with this verse...
But those who trust in the Lord for help will find their strength renewed. They will rise on wings like eagles; they will run and not get weary; they will walk and not grow weak." Isaiah 40:31

Anonymous said...

I have read Kayleigh's story while checking on Morgan kate.
I will pray also for her.
I know this is so stressful not only for you but her little body also.
God is a great God who can do more than we ever expect.
God bless you and your family.
My prayers will go up to God often for her!!!

N said...

I began following Aimee's story when I was pregnant with my daughter and heard about her on BabyCenter. I remember when the doctors told you that every day Kayleigh might die. I checked her thread numerous times daily just to make sure that little girl she had inside was still fighting. When my little girl was born, I prayed to god that he would give you the joy of seeing your daughter born. Watching her smile, holding her tiny fingers in your palm. Now, my 7 month old baby girl and my three year old son pray for you before we go to bed every night. Since I have been following from that very first post Aimee wrote on BabyCenter until now I truly know what a miracle Kayleigh is, and I hope you know how much my family and so many others are praying for her.

Deni said...

I am praying for you guys like always. It sounds like God's peace is just pouring over you!

Dad/Grandpa said...

I am the Grandpa of Story Lunnen also a premie ( my daughter gave me your blog info). I pray for your daughter, both of you and the physicians. Your trust in God is so strong and He will give you all the strength you need.

Jim Mikolaitis

Anonymous said...

I have faith Kayleigh will make it through. Stay strong, Kayleigh. You have been amazing through all of this. I can't wait to see her going home pictures! She WILL get there!

Anonymous said...

Know that we're praying for all of you and sending strength and peace across the miles. Kayleigh is such a fighter. Our blessings on all of you and on all of the people who have been working so hard on Kayleigh's behalf.

Anonymous said...

I am praying for your family still. Little Kayleigh is strong, but have faith that the God who formed her, knows her, and loves her is stronger. He is stronger than you. He is stronger than the doctors and nurses who lovingly care for Kayleigh. He is stronger than the hundreds or even thousands of people who are praying for her. He is strong and he is good. Have faith in this God who is at work in Kayleigh and through her story to touch the hearts of so many! Kayleigh is already a miracle.

Angela said...

I just found your blog through a friend. Wow. I will definitely be praying for you guys!!
My son Benjamin just had open-heart surgery to repair a large VSD and ASD. We found out when he was born in April that he has Down syndrome and would need surgery to repair his heart defects. But he was a nice, healthy 12 1/2 pounds and 5 1/2 months when he had his surgery on 10-3-08. So I can't imagine how much harder it would be in your case!! Feel free to check out my blog if you want to--we have pics from before and after the surgery. Lots of prayers coming your way!!

Anonymous said...

Wow...What a touching story...I'm still in tears...I have never seen such determination & love from a couple ever...You two are truely a force together...I wish your family all the luck...I am praying for you all...Angie & family

Anonymous said...

Just thought that I would let you all know that the entire RT freshman class at JCC are thinking about Miss Kayleigh. I had a little show and tell today with your blog. (I had to show off the baby that I pray SO MUCH FOR!)

Praying for rest and recovery. Rest for both Kayleigh, and Mom and Dad and a strong recovery for Miss Kayleigh.

On another note. Adam and Aimee, you both are so strong. Not only for Kayleigh and Allyson and Brandon, but for each other. You have a beautiful relationship that God has truly blessed.

Kayleigh's Kentucky Prayer Warrior
Kelly Sheree

Anonymous said...

I'm a surviving identical twin. I was 1 lb 1 oz and my twin sister was 1 lb 3.5 oz. I was 10 inches long and my twin was 11.5 inches long. We both had many of the problems that Kayleigh is going through and plus that. Long story short, My twin and I were born in Austraila and had to be transfered to the USA at only two days old. The transfer took three and a half weeks. Our Birth Certifertes say we were born in New York because we were born at 22 weeks gestion. Mind you we were born September 1985. We weren't due til January 1986. My identical twin sister died from heart failure and I was going through the same but not as severely. If it wasn't for my twin dieing I wouldn't be today and I'm very thankful to be here but I do wish my twin was still alive. She passed away at 2 and a half months old. I am now 23 years old and fairly normal. I do have learning diablites, Tourettes (from my dad), OCD (from the tourettes), ODD (from the tourettes), and ADHD (from the tourettes), and I need glasses due to near sightedness.

Anonymous said...

So hang in there and keep praying. God heres you, your family, and friends, and everyone else.

Jennifer said...

Deu 31:6

Be strong and courageous! Do not fear or tremble before them, for the Lord your God is the one who is going with you. He will not fail you or abandon you!”