4/12/09 - HAPPY EASTER!!!

I am in heaven after spending some quality time with Kayleigh tonight by myself. Don't get me wrong, I love having Aimee with me when we go to the hospital, but there are those rare times where I get to spend one on one time with my sweet daughter and tonight was one of those times.

Kayleigh is doing much much better and I am pleased to say that "hopefully" she just had a cold that caused her to act up this past week. Whoever has been following Kayleigh from the beginning will know that she can handle the tough times like a champ, but when it comes to something small, she hits rock bottom.

Kayleigh is on her way back to full feeds. They started her the other day and are moving up quickly. Her belly is handling it quite well. It has enlarged a little, but it is soft feeling which is normal for her. She is no longer on any antibiotics and is not producing any yellow/green mucous out of her nose/trach. The great news is Kayleigh's recent Echocardiogram has showed that Kayleigh's pulmonary pressures have returned to her normal baseline. Her baseline is still on the elevated side, but much better than where they measured out to be the other day. Also, her heart's right side functions have return back to normal as well. Praise the Lord!

The cardiologists met on Thursday for their weekly meeting of the minds and are possibly deciding to transfer Kayleigh's hypertension medication (Flolan) to Trachlear, which is a medication most pulmonary hypertensive patients go on, but we didn't think it would be this early in the game. Trachlear is sort of a liquid form of the Nitric she was on before and will do the same job as the Flolan is doing now. Once they get her on the Trachlear, they will start to wean her off of the Flolan and remove the central lines that are placed in Kayleigh's chest. The good news about Trachlear, is it will be administered through her "future" G-tube and orally when she starts to take a bottle later down the road. The bad news of this drug is that it has potential to disrupt or even harm her liver functions. I think the older she gets, the less of a chance that will happen. I am guessing that now she is bigger, she has a better chance of it now harming her. We at least hope so or that could be another problem we don't want.

Speaking of Kayleigh's weight, she is over 9 pounds now. What a chunky monkey! You can tell by one of those photos, she is putting on the pounds. It is hard to believe she is nine times her birth weight. Yowzers! She hit the 9 pound mark last week, but quickly fell below once they gave her some Lasix to remove some of the excess water retention she was holding on to while she was ill.

Last but not least, Monday we will be scheduling Kayleigh's upcoming surgery for the g-tube, nissen and bilateral hernia repair. We are beyond excited to hear we are getting close once again to proceed with the surgery plans because the quicker we can do this, the quicker she can come home.

It is tough to write about some fun thing when Kayleigh isn't doing well, so I am going to rehash our events when we went to Joyce and Terry's house (Aimee's Mom and Step Dad) last weekend. We all went for a hike on their nature trail down to a lake that is near their home. Besides sneezing and blowing my nose a million times due to the nasty pollen issues we are having here in Charlotte, it was a great escape from the real world. It felt awesome to finally get out of the house/work/hospital to have some wonderful family quality time. Here are some of the photos that we took from that day.

Everyone loves licking the brownie bowl! "Sorry Ally" :)

I can't say enough how much I appreciate everyone's thoughts and prayers through this journey. It is a blessing to receive so many thoughtful comments on here and on Facebook. I am trying to answer more of your questions, so please let me know if you have any and even though we are so very busy, I promise to do my best to get back to you in this lifetime a timely fashion.

Happy Easter Everyone!!!

God Bless,


April said...

I will pray that her new meds do not affect her liver functions and continue to pray for good results. Your strong little fighter is amazing, she's so beautiful. I know how much your one on one time meant to you AND Kayleigh. Following your story everyday and praying for her everynight. Will be thinking about you all on Monday!

Anonymous said...

Indeed it is a blessed Easter. The good news about Kayleigh has made this Easter even better. God has and is performing miracles with this tiniest of angels. He does love the children in His world.

I am glad you all got to spend some good family time together. Prayers are that it won't be long before Kayleigh will be home to spend her time with you all.

Prayers and heart are with you all.

Ann Stegall
Wake Forest, NC

Intelligence said...

Glad to hear everything is going so well!!

Sarah Suzy said...

Happy Easter!! Kayleigh looks just beautiful, and I am so glad that she is recovering quickly and getting back on track. Prayers are always headed your way, even when comments aren't!!

Sarah, Chris, Helaina and Ava J.

Unknown said...

So glad to hear Kayleigh is doing well!

I just have to say, I was blown away by the last pic of Ally. She looks so beautiful in that pic!!! She's def. gonna have to be kept under lock and key when she hits that dating age!!

Kayleigh is just as beautiful as ever too!


Lea Ann said...

awww this warms my heart. Thanks for sharing! =0)

Karen said...

Kayleigh is getting chubby cheeks and a double chin - I love seeing that on her - Amazing!! The pictures of your older kids are very cute too - they are geting bigger so fast to!! Happy Easter!!

Shari said...

I am praying for your little blessing each day. She sure is cute! The pics with her fingers in her mouth are darling. Adam, how's your new job going? I have been praying that you get acct after acct and soar! I know you will. Take care and have a blessed day!

Anonymous said...

Happy Easter Freeman family! It's been a blessing to read your blog, though I am new Kayleigh's journeys. I'll be praying for her nightly along with the many baby prayers I ask of Him.

She is so adorable and I cannot tell you how much I enjoy reading your blog. Big suprises, small packages... Here's to Kayleigh trekking on!


Amber said...

I am SO excited for you!! Things really seem to be taking shape.
I will have to say,Kayleigh really is starting to look a lot like Mama
Your family is always in my thoughts. I am so thankful to have been here from the start, it is truly a miracle that has been laid before my eyes. THANK YOU for sharing Kayleigh with me.
Many Hugs,
Amber (Las Vegas)

Jean said...

Happy Easter to your wonderful family. Glad Kayleigh is doing better. Its great that you got to spend quality time with Brandon & Ally it has to mean a lot to them. Have they gotten to see their little sister recently. I would love to see pictures with them and Kayleigh again. Have a great day and God Bless

cancersucks said...

Happy first Easter sweet Kayleigh and the whole Freeman family. Be well!

Becky Momto3boys said...

Happy Easter!!! Wow she is sure is getting big! I will pray that she can have the surgies done very soon so she can heal from those and come home! She has come a long way (I spent a few days reading the store from the beginning)!!! She is amazing!!!!

elizabeth said...

Happy First Easter Kayleigh! A few more Easters and you will be searching for eggs with your brother and sister! I hope that the Easter Bunny was good to you 3 kiddos.

You can definitly tell from the pictures that Kayleigh is gaining weight -- look at that CUTE double chin! She still loves her fingers....wait until she finds all of the other fun things in life, like food!

Adam & Aimee -- I know that you mentioned you may not be able to keep your house and you were supposed to have until the end of March. I don't recall seeing an update, but may have missed it. How are you doing house wise? I was so glad to hear that Adam was able to land a job - what a blessing that is. I hope things are settling for you as a family.

Aimee - you always look so pretty in your pictures! Can't tell that you had a baby 10 months ago, never mind 3 kids total! You look great!

Happy Easter Freeman Family!



4 Lettre Words said...

Happy 1st Easter, Kayleigh! Hugs!!

Lindsey Barham said...

What an EASTER BLESSING to hear that Kayleigh is doing wonderful. I am telling you that God has great things in store for this little miracle. I am anxious to hear when they will be doing the next procedures next wk, but I know you will let us all know as soon as they inform you. I can tell she is gaining the weight. She is looking so good to me. I am so glad to hear that the four of you got to get away for a little bit, I know that you all enjoyed that. I can't wait for more wonderful updates soon. Have a wonderful and blessed Easter.

Anonymous said...

Best regards dear Freemans :)
We r from Russia, there many moms leaves theyr children in state establishments when find out any deviations. U r right that you cure you baby, god bless you )

Jenny @ flutterbyechronicles said...

aww Love all the photos. Happy Easter

Jenny said...

You're family is beautiful! May God continue to bless you and Happy Easter! We are always praying for Kaleigh in Kansas:)

Unknown said...

YAY! That's great that she's doing so well, much better than last week, it sounds like. Take care of that precious little girl and Happy Easter!!

Jennifer said...

Isn't she just so sweet. Perfect shirt for a perfect little angel.

I'm happy to read that you were able to get "away" and enjoy your family and being out in nature. It does wonders, doesn't it?

You have such a beautiful family. Blessing to you on this Easter Sunday.

Erin said...

Happy Easter too! And may God continue to bless your family in so many ways....give that "chunky monkey" of yours xoxo's.

Sara said...

Kayleigh looks really good- and she is putting on the pounds! I just want to squeeze those little cheeks!
I hope that she gets to feeling better! And I am glad that you got to spend a little one on one time with her. :)

Patricia said...

We are so glad Kayleigh Anne is doing better...you can tell by the pics that she is feeling better...love those bright eyes...and look at that double chin..lol..love it too! She will get that surgery out of the way...and WILL be going home very soon..GOD is sooo good! Love the pics of you and Amiee with the kids...just AWESOME to look at! Be blest today for GOD is holding your family and cradling all of you in HIS loving arms...GOD bless all of you this Easter Sunday...Praise GOD for HIS love and strngth!
Patricia & Wes

Kate said...

I just came across your blog and have spent the last few hours reading it right from the start all the way to the newest post. I am lost for words, your little miracle truely is a real fighter. I cried reading through all the posts, I cannot begin to imagine what you have been through/what you are going through. Kayleigh is so beautiful, you have been truely blessed. I am going to continue to read her blog and follow her story. I hope one day soon she will be strong enough to go home.


Meade family adoption said...

Just wanted to say HAPPY EASTER!!!! to you all and say that we're praying for you all. Good luck this coming week, I'm praying for nothing but success for all Kayleigh's surgeries.---You have a beautiful family by the way.

CinderellaMommy said...

We've been praying for you & will keep on doing so! Happy Easter!


Jennifer said...

Does she have an expected "going home date" yet? I know your Easter was blessed in many different ways. When times get tough- remember smileling takes only a few muscles while frowing uses a whole bunch more... :) Keep your eyes on the horizon and out to the future..:)

Joni In MN said...

Hugs ya all :) You're all looking so good & I can only pray that it continues to go UPward & onward to when the WHOLE FAMILY is together as one in YOUR Home! :) May God be with Kayleigh & the Surgeons as she undergoes this next event her life! May He comfort you while waiting yet another day for her complete recovery!
Happy Easter to you also!
He Has Risen! :)

Anonymous said...

your little one is getting big.
I do hope all the surgeries go well so she can come home soon.

Tristan came home with a G-tube, never took a bottle, only sips from a sippy cup here and there, thats a long road too.

I hope and pray she continues to do well.

Brittany said...

I am happy that Kaleigh is doing better. She is such a beautiful girl. Nine pounds is wonderful!! I pray that she continues to get stronger. I pray that God guides her doctor's decisions. You and your family are constantly in my thoughts and prayers. I hope you and your family had a wonderful Easter together. May God bless Kayleigh and your family. God loves you all! Blessings!

Adam said...

Rachel - I completely agree...just more stress to add the the pile. lol :)

Shari - The new job is going pretty good. I am also going to be doing some pressure washing to pick up some extra business along with my new job and helping Aimee with real estate.

Jean - Allyson and Brandon have not gotten to see Kayleigh since August. RSV season should be over soon and they will get a chance to go see her. They are way excited!!!

Elizabeth - Our foreclosure date was pushed off from March 29th to April 27th. We are conversing with the bank on working out a deal. Hopefully they will work something out, but if not, then we may have to move in with one of our parents. Also, Aimee greatly appreciates your compliment. Thank you so much!

Trying4two99 - There is no date set in site right now. I have jinxed myself by saying "In one month" too many times, so I am just going to say, when Kayleigh's upcoming prcedures are done and she is healthy, she will come home ;)

Thank you all for your comments and I hope your weekend was filled with many blessing.

God Bless,


Stacey said...

I know what you mean. When my first daughter was born, everyone left the room and it was just her and I. It was amazing. Not that we don't love the time as an entire family too. But just being the two of us was invredible that day.
So glad your little princess is feeling better.
Take Care, we're still praying,


I am glad to hear that the procedures are scheduled to take place Thursday. I will start praying that everything will go well and that this will get her on the home stretch. I can't wait for more wonderful posts to come soon.

Joanne said...

Love all the photos and thanks for posting new ones of dear Kayleigh.

I love reading your blog and appreciate the time you take to keep us updated.

queenmari said...

kayleigh looks so adorable in the pictures from easter. she is a cutie!

keeping you in our prayers.

April, Mom to Heavenly and Earthly Angels said...

Praying for you Beautiful Lil Baby girl. She is Amazing and will keep her in our prayes as we will the rest of the family also as I know oh to well the effects of a Long NICU stay. Lil Blessing are such Big Blessing inour lives..

Unknown said...

She is so beautiful!!!! Awwwww Her little face is so sweet!!



Jenna said...

Thinking of you all! We love you Kayleigh!

Mary said...

Great pics!! So great to see that you are back on track!

Heather Marie said...

Praying praying praying!! :)

Great pictures! :)

Danyele Easterhaus said...

uber preciousness!!!! love all the pics of you guys!

The Red One said...

she is so cute with her fingers in her mouth...just doin what she is supposed to be doing. so cute!!! she is getting so big too!

amanda said...

Beautiful Family and I am thinking of you and praying for all of you!