11/12/08 - Goodbye NICU...Hello NPCN!!!!!!!

Kayleigh is having another great day and they are actually about to move her over to Progressive Care (NPCN) tonight. She is currently on .2 liters of flow and at 100% which is what she can go home on. She is also finishing all her bottles like a champ and not having and saturation issues at all. All we have to do is keep this up and she will be home in no time.

But....We need to keep an eye on her weight. Right now she weighs 1570 grams which is 3 lbs - 6.6 ounces. They have started to fortify her milk again which if taken by a bottle, she has no problems digesting like she did a while back. She is also on Lasix which could be a reason she has not been growing like she should lately. She did have a very invasive surgery, so weight loss is expected as they are trying to refrain from any fluid building up. They are weaning her off the Lasix slowly, so we should start to see a turn around in her weight very soon. I don't think that would hold her up from coming home, except in case she doesn't pass the car seat test for being too small. Someone emailed me today about some car seat requirements, which we are definitely taking in to consideration.

Well, as we leave the NICU and never look back, there are a lot of memories that will always remain in our lives, but NONE of them will be missed.

You see, when we make our 24 minute drive everyday, Aimee and I will always remember those days where the drive was completely silent. The days where we weren't sure if it would be our final trip to see Kayleigh alive as she battled for her life. This is the drive that we would take over 200 times in the past 5 months. There were the days where traffic couldn't move fast enough to allow us to get there quicker. We jammed to Wade Joye's/Elevation Church (We Are Alive) CD and practically memorized every song on there. Most of the time, this drive was not too bad and will always bring back memories, but it is a drive that won't be missed.

As we show up to our parking deck, at the same spot where we would enter with hopes of good news and often leave with bad. You never knew what mood or feelings you will have when you leave, but as time went by, leaving Kayleigh would leave you feeling numb inside no matter what. Time after time we would enter this road often traveled by others, who probably felt just as numb as us and who would possibly be making their last exit, from/with the ones they love. It is a tunnel of joy or heartbreak as I call it. No matter what, this parking deck has it's stories. We loved parking in this deck as it was much more convenient than all the other parking decks, but it won't be missed.

Our favorite parking spot was the closest to the door, whether it was on level three, four or five. Most days we were lucky to get this spot, but we knew God was saving it for us as all the other spots were full. It didn't make sense, but we didn't question Him. It is amazing how the little things that would make a day better or less stressful. We love this spot, but it won't be missed.

Without question, this was the best cross walk in the hospital because it led to the Starbucks ;) We love Starbucks and are so glad they are practically in every shopping center around, because this one won't be missed.

After a month of learning the confusing hallways through the hospital, we found the elevators that led us right outside the entrance doors to the NICU. They could tell you about the days we impatiently traveled them when we couldn't wait to see Kayleigh after passing a certain milestone. Such as the first time Kayleigh was off the CPAP in two weeks where we could see her beautiful little face without any obstructions. These elevators were for the most part quicker than other elevators and they seemed to make it to the 7th floor without stopping. Even though these elevators made another thing about our days less stressful, they too won't be missed.

Entering the NICU for the first time to see Kayleigh will never leave our minds. With wide eyes and a fear of not knowing what we were stumbling in on, nurses would direct us where to go and what to do. Walking up to Kayleigh's isolette to see her tiny hands reaching out in space to latch on to the first thing that touched them was a moment we will never forget. Over time, this entrance would be fun as we would make faces in the camera before the front desk attendant would open the doors, laughing with others in the background about how silly we were. May we laugh a thousand times, but this front entrance to the NICU will never be missed.

As we washed our hands before every visit, to washing them at home, or anywhere else will bring back the memories of washing them in this sink. These sinks have permanently scarred us for life. "Lather up, sing your alphabets twice or for two minutes and get some alcohol on the way out" are the words you read on a note right in front of your face. Every time I hear pipes rattle, I will think of the sink on the left. A day wouldn't go by where I would forget to tie the back of Aimee's gown, but reminded quickly with a deep clearing of her throat. These sinks will never be missed.

The hallways are filled with memories of those who resided before us. A photograph of the parents and their preemie(s). Some were in the NICU for weeks and some for months, but as I see them everyday, I am reminded of the time I told the not so positive neonantologist that Kayleigh will be on that wall someday. Even though he doubted me while saying she needed to get here first, I knew Kayleigh would leave that NICU one day and never be forgotten...No matter if she was on that wall or not. These walls will never be forgotten and they will also...never be missed.

This NICU was filled with many memories from the day Kayleigh was born, where she battled all of her ups and downs, and to this day as she leaves the NICU for her final time. We would not have wanted anyone to care for Kayleigh other than the doctors and nurses within these walls, and as this place will never be forgotten, it will never, EVER be missed.
God Bless,

The Freemans :)


Anonymous said...

Wow! What a great post!! I am so excited for you guys!! That trip that you guys have made everyday for the past 4 months has brought tears to my eyes. May God bless Kayleigh, Aimee, Brandon, Allyson and you, Adam! Thank you for making Kayleigh a part of my family's life for the past 4 months! (And more to come, too!) God bless you and your beautiful family!

Deni said...

I drive by the hospital Parker was in a lot. It is weird for me now, I almost always start to think about getting into the exit lane...I can look at it and remember the walk from the parking lot to the nicu, I almost remember the sights, sounds, smells...I can really remember the walk from the elevator to the nicu entrance..while I know it all...I do not miss it. I do miss the people that touched our lives, but I don't miss the beeps, the rushing around when another preemie is born, the annoying quiet, the sound of crying, the sound of laughing, the joy of a baby leaving...

We love you guys and know Kayleigh is strong and will get home soon.

Did you see the pics I sent for you from Parker?

Anonymous said...

WOW!! AMEN! I totally hear you! I think one of my worst feelings ever was walking out the hospital after giving birth without my baby. I knew I walked in preggers but walked out leaving my baby there!:*( You both are such an insperational family! It's so amazing to see how far Kayleigh has came! An Amazing Miracle!! I can't wait to see the post heading "She's going home!" Soon she will! God Bles You Kayleigh!!

Mommy to 2 boys
1 who was a 31 weeker

Jennifer said...

What a great post! I agree that although we appreciate the care of our babies all those memories are not going to be missed. I'm glad she is still doing very well. Yay!!

Nelson Family said...

So, don't worry too much about taking her home as far as carseats go. they make a "car bed" for babies that weight under 5 pounds.. her is a link (http://www.thenewparentsguide.com/preemie-car-seats.htm) also the nurses will address weather your seat is going to work or not and are legally allowed to make modifications to make sure your baby is breathing in the seat.. (my daughter had to have a rolled up burp rack along her lower back to stop her from desating). they should also do a car seat test.. it is 3 hours of your daughter sitting in the seat while they watch her saturation lvls. so as long as she is gaining and looking good on all the other avenues... don't fret the small stuff.. the carseat is the least of your worries. also a lot of hospitals.. ours did. will have some of these baby seats to give as a loner.. til they are big enough.
your journaling is amazing!

Anonymous said...

That was a great post Adam! Our Family has followed your family's story from the begining and we are so exticed at the results and to see what happens in the days to come. We are praying for all of you each and everyday. Even when precious Kayliegh comes home and you all go on with your lives, your story, fatih and strength will be remembered in our home always.
God Bless you guys! and Praise the Lord for the gift he has given you.

Anonymous said...

Adam and Aimee,
This is an amazing journey your family has been through! God certainly has been looking over your little Kayleigh from the beginning. Prayer is such a powerful thing, and this little girl is living proof~! Every time I read your posts, it brings tears to my eyes! Kayleigh has stolen many hearts already! Best wishes regarding Kayleighs homecoming!
Andrea, CMC 9B

Martha Compton said...

Your post brought so many memories from Presby's NICU. Even though it's obviously not the same hospital, seeing the parking garage, sinks, hallways, etc. it seems so familiar.
Also, don't fret about the carseat. You can rent a carbed if she doesn't pass the carseat test and also FYI the Chicco carseat is rated for 4 pounds. But...isn't it exciting that this is what you're worrying about?

Crissie said...

The Nicu is OVER!! Yipee Little KAyleigh! Now, Help mommy and daddy get some meat on your bones so you can get to that much more colorul and lots more inviting home that they have waiting for your arrival!!! Adam Thanks for the tour of the hospital and I know that you will never miss that place....but some day when you and Aimee get to share all this with Kayleigh it will just be a reminder of how much her amazing parents really love her and how much work went in to GETTING HER HOME!!! If it was not for all that YOU and AIMEE did it would not have mattered how good the hospital was! Or the DRs! You were the ones that took it in your own hands and by the grace of god you were able to share little Kayleigh with the world! THank you both for that!!!

Crystal in CT

Heather said...

Praying she'll be home soon!!!

Anonymous said...

That was a great post! I am so happy Kayleigh will be coming home very soon.When My preemie came home from the hospital she weighed 3lbs 11oz so I think Kayleigh is going to be just fine.

God bless

kristyo15 said...

How Awesome is Our God! Little Kayleigh is such a Miracle! I look forward to your posts everyday to see how she is doing. Great post today! Keep up the great work Kayleigh...we're looking forward to lots of pictures of your Homecoming!

Jenny said...

My little one came home weighing 3lb 8oz! She passed the car seat test without a problem! I have many memories that have eased as the time goes by. The one that sneeks up on me is the smell of the soap. As crazy is it may seem I will be washing up some where and they will have the same soap. It hits like a ton of bricks. I just have to remember how far we have come. My 1lb 14oz tiny baby is now 4-1/2 and weighs 32lbs. She will be in kindergarten next fall. She has no side effects except for being small. God Bless! Keep growing and you will be home soon.

chdmommyof2 said...

SO HAPPY FOR KAYLEIGH!!!! ITS AMAZING. I really think they wrote that song for her!!! that was very touching, the way you explained your everyday life in the NICU! everytime we leave the CICU i hope its the last time. i know for aubrey its not. everytime we go into the hospital, its the numb feeling you explained. and the many times going in and out of the hospital, for aubrey, we never know. its funny, we park in the same spot everytime, the same elevators, the same way....everytime. i am still praying for the precious miracle from GOD!!!!

Anonymous said...

I just found your blog from another one I follow and I all can say is wow! What an amazing family ya'll are; as the mom of premature BBB triplets that are now 5 months old, I know the pain of the NICU...but i also know the incredible joy of bringing my babies home and enjoying life after the NICU. May God continue to bless you and your family as you continue on this amazing journey of touching peoples lives with your beautiful family.


GiGi said...

Wow this so brings back memories and we were in a different Hospital as well as state.
McKayla and McKenzie were 3lbs 8oz each when they came home. They had a 45 minute drive and did great in their car seats.
There were def a few things we missed though.
We missed the sleep. The NICU had wonderful nurses that fed and cared for our preemies while we slept. Unfortunately they do not let you keep them and bring them home with you.
The 6 months after coming home was such a blur. I can not wait for you to have those amazing but insane times together.
Amy will be pumping while you change diapers and anything else wet. then you will fortify her milk and then feed burp etc. Then sleep one hour before doing it again around the clock.
Laundry, Dinner,cleaning,work, Brandon, Aly, the dog. Yah. Do the math every 3 hours 1 hour sleep = 8 hours but that will never happen and 8 hours broke up are not the same.It's kind of one of those be careful what you wish for things but at the same time soooo worth it! You might make sure Grandma's and Grandpas are lined up to help a few overnights so you can sleep. Put them on alert now.
I will miss your post during that time but believe me I will so understand.
Thank You God for all your blessing and for showing us once again that great things come in small packages.AMEN

The Woollard Family said...

I don't know how you do it, but everytime I read something you write I end up in tears and my 10 month old is constantly wiping them from my face or off her arm.

I am so happy that Kayleigh is doing so wonderful!! For such a small little girl she is taking such huge, but great, leaps and bounds to get to where she is today.

After she comes home, will you continue to keep us updated on how she is doing?

Camille said...

What memories! I can tell already Kayleigh is going to be a great baby! Cherish every moment when she comes home...
The Chicco Cortina was a great choice for my little guy. It fits 4 lbs. and up. I've had mine for 10 months and we still love it!
Camille (mom of a 29 weeker-Max)

Betsy said...

What an amazing post! Yay Kayleigh for being out of the NICU and NEVER going back! That is awesome! Have a great day and know that we're still praying...praying that this time next week we're talking about Kayleigh going HOME!

Aleksiasmommy said...

Yay Kayleigh! I am glad she is doing so well. Great post, thanks for the pics. God Bless you guys and God Bless little Kayleigh!

Jennifer in NM said...

YAY KAYLEIGH!!!! That was an amazing post your daddy wrote and everytime I read his postings I have tears in my eyes and a lump in my throat. You have an amazing mom and dad.

Adam and Aimee, although my little one wasn't a preemie, just pre-term, I remember that dreaded day when my doc had no choice but to release me and I left empty handed. I had never done that before, all my babies had always gone home. But I know the feeling of making that drive, finding the parking spot, and walking into the NICU to wash up and get in that yellow gown. I stayed 15 hours a day some days because I couldn't leave him, and he was nowhere near where Kayleigh had been. But I too have the same sentiments you do.

I am praying that next week we will see she is coming home. Fast question though: Is it a bad thing that she is still on 100% oxygen? When will they start lowering it?

Anonymous said...

Aimee and Adam,

What a great post, for all of us reading it now and for Kayleigh when she will look back on her experience as a older child. I can't wait to see her trip home. You little girl has taught me to beleive in miracles again and that anything, absolutely anything is possible if you can just trust in God.

Karen Smith
Calgary AB

SarahShano504 said...

i'm overwhelmed with joy about this update.
the pictures, melt my heart.
and the parking spot teared me up.

The way you word things, i woulnd't hesistate to buy a novel.

Stay strong Kayleigh, you're SUCH a trooper.
You're one of the strongest baby girls i've ever seen.
and one day YOU will change lives
and help others.

yall are constantly in my thoughts,
and the first thing i do when i sign on, is check on Kayleigh.


Anonymous said...

Very nicely said.

I am so happy to hear she is doing even better.

I friend of mine just took her baby home in a car bed. Maybe that would be an option too.

I will be praying she gains weight and is home next week (or sooner of course ;)).

Denise in CA

AliciaJohnson1983 said...

A really great car seat is Baby Trend Flex Loc car seat. You can get it on Wal-Mart.com. It says it only goes down to 5lbs, but it worked perfect for my little Natalie whom was only 3lbs 10oz when she came home. She had the car seat test for 3 hours! Because the following day we had to travel to Grand Rapids for tests. She only had 2 or 3 desats in the seat in the 3 hour period! They were very insignificant as well, being down to like 88% for a brief 2 or 3 seconds. Paying for Baby's R us preemie seats are around $250-$300!
I am so happy she finally gets to leave the NICU. She is so close to coming home. It's going to be weird for you guys to have her home. She's been the hospital for so long! Congrats!

Heather Plis said...

seriously! what an emotional post...you made me cry. i know you don't know me, but i tend to be emotional as it is, but whew you sure got me with this one!!! so glad to hear this very sweet news!!! no more NICU!!!!!!! hooray

cincymomof4 said...

Adam, you REALLY should consider writing a book about Kayleigh's journey. Wow! You are such an awesome writer. That was a great post and we can all visualize more what you guys go through every day.

Kayleigh will pack on that weight in no time! You watch! It won't take her long. I just can't wait for those pictures of her at home!

As one of the previous posters said, thank you so much for making Kayleigh part of my life too! She is indeed one of the highlights of my day!


Anonymous said...

What amazing news! Kayleigh is an incredible little girl someone that has touched so many lives. We think about her all the time and continue to pray for her. We hope that she will be home with you and your family very soon
Baltimore, MD

Adam and Sherry said...

I am so excited for you!! I thought I would let you know about the car bed but I see others have. You may want to check with the hospital. Our hospital rents them out since you don't really want to have to pay the expence for a seat they can only ride in for a few weeks. Check it out and I am so thrilled for you. Hopefully home will come soon. We are waiting for that day too and it seems it is comming fast!!!

Kristin said...

Thank God you guys are leaving! I am so, soo happy for you. My son is in the NICU right now (we've been there 3 months so far) and I completely relate to the parking lot, elevator, hand washing sink, the doors, the pictures in the hall, all of it! It's so awful to see those things every day... and i am so glad you never have to see it all again. Reading your blog has been encouraging, thank you for writing. :)

Anonymous said...

I can't believe the journey you have been on! I hope and pray that soon this will be the end of this road and on to a new one with a little one at home!
With love from Southern NH!

Anonymous said...

Wow and congratulations to Kayleigh and her family on the next big step closer to going home. She has come SO far and I can only imagine how happy/relieved you guys must feel knowing that your AMAZING little girl will soon be in your arms for good. Kayleigh will have a wonderful story to share with people one day as she is living proof that miracles happen!! She is already so loved by so many people who she doesn't even know and she's got tons of angels and prayers to watch over her. LIFE IS GOOD, and I'm so very happy for you and your family. May God continue to watch over you guys and Kayleigh's health to do nothing but progress from here on out. God bless.....Anne
Cheyenne, WY

Francis Allende said...

I just want to say-great job Kayleigh! Good bless you.
I send you a hug from my daughter Keelan still a NICU but doing well.

April Alcorn said...

Hi Adam and Aimee, WOW this was one POWERFUL post!!!!! It really really moved me!!! I stumbled across this blog a few days ago and have been reading and reading everytime I get chance to sit for a few ( I have three kiddos ages 5, 3, and 1). I cannot begin to tell you HOW inspiring your little miracle has been to me!!!!! It's all the little moments in life that don't seem important but WOW all those so called "little" moments are a big part of life's BIG picture!!! My youngest child Madilynn Grace was not supposed to be here. She's one now..... She was a twin, her twin did not make it past 9 weeks, and I continued to bleed and pass tissue for weeks. We'd be so shocked everytime we would here Madilynn's heartbeat still beating away SO strong!!! May God always keep his loving hand over Kayleigh's sweet body and soul!!