7/15/08 - Look at my hair!!!



Wow, Kayleigh's hair is really starting to come in more and more each day. I still think it's blonde. ha-ha

Today was a better today than the past couple days so I have to be excited about that. They discontinued the Dopamine that she was on because her blood pressure regulated and she peed a lot through the night. Here is the great news of today. The x-ray that they took of her showed that her heart was not as enlarged as it was yesterday and there was less fluid build up in her lungs. They have increased her IV fluids and started to feed her again. That is amazing news and I hope that it continues to progress.

The rough part of today was that she was showing a lot of signs of irritability. She was on the vent and desating like crazy, but she wasn't desating like normal. She would drop down to around 50 and then it would take her forever to get back up. They had to bag her quite a few times today which means they had to pump air into her lungs manually. They just couldn't put their finger on why she was struggling. When Aimee and I were there, they decided to reposition her and remove her vent tube. The Doctor that was watching thought he would like to try and see how she did on the Bubble CPAP again. I was not happy because I knew she would definitely not get any rest then. The Doctor figured she was just trying to refuse the vent all together. So within an hour, she was put on the Bubble CPAP, then changed to the Conventional CPAP and then back to the Vent because she was not accepting any of them and really doing poor with her breathing. It was very stressful to watch, so Aimee and I left to go down to the cafeteria with Wade and Ferris to eat dinner. It is so awesome to have friends in the NICU like them to either vent to or rejoice in good news. When we returned to see her knocked out, it was an awesome feeling. Her vitals looked good and she was sound asleep. They gave her some pain medicine to help her rest and gain her energy back. Poor girl was so wiped out, that he vent was completely breathing for her when normally she over rides it.

It is going to take some time to get used to this stress, but I am glad that we have all of our support. Aimee and I have been getting wonderful emails from so many people. To hear all the people who are out there following Kayleigh's story and praying for her just overwhelms me with joy. I love to check my computer to see who has posted to say hello and the miracle stories they share. We thank you so much because your emails and prayers are what gets us through the days. This is the hardest thing that Aimee and I have ever had to deal with in our lives. Thank you all for being amazing to us. You are all truly a blessing from God.

The Freemans

16 comments:

Carly Nicole Elliotte My Micro Preemie said...

PRAISE GOD FOR THE GREAT NEWS!!!!!

I pray that the days to come are filled with more improvements. I know how great it is to have a NICU buddy to talk and relax with. It really helps with the stress that comes with being there. God bless you all.

In Christ,
Rachel

Anthony's Mommy said...

I am sooo happy to hear that her heart isn't enlarged and her lungs have less fluid. I wish I could remember the meds they gave Anthony when he was on the vent. It made him irritable too and they gave him something to keep him relaxed and sleepy. For the life of me I can't remember, but I know its pretty normal protocol. She just needs rest, to grow, and then she'll have her surgery and become a feeder and grower! I just know it!!

Kim

Anonymous said...

Glad to hear you guys had a good day. We well pray for many more.

Amber said...

Kayleigh is the blessing, I just feel privlidged to be able to read her updates. She is one special little girl and I think about her daily. Keep up the good work Kayleigh!

Babyksmom05@yahoo.com

zzzzzbaby from bbc said...

I'm glad that you guys got some good news. I'm sorry Kayleigh had a hard day, though.

I've shown your blog to my children and they are just amazed by Kayleigh and think she is absolutely adorable. They are so impressed with what a fighter she is.

Lots of prayers headed your way!

Michelle said...

I check up on Kayleigh daily, thank you so much for keeping us updated! I'm another Sept. '08 BBC Mom and I know we are all thinking and praying for you you guys every day. She's such a fighter, and so beautiful! God Bless!

Candace Jackson said...

Hey Adam & Aimee,

I have been glued to reading Kayleigh's story for the last hour or so smiling and crying throughout. Kayleigh is truly a blessing and is blessed to be surrounded by SOOO much love. I pray for Kayleigh and her lovely family that you have many more good days together. Stay strong!

Jen said...

I have been following Miss Kayleigh's story for awhile now, I am a fellow NICU baby, my baby seemed healthy and then the world came crashing down upon us within 10 hours after birth. Being in the NICU is probably the most stressful place to be, no one ever imagines that this could happen to them. Keep your faith in the Lord, he knows what's best for Kayleigh, Keep your faith in the Dr's and Nurses and keep your faith in each other!

I am SO happy to read that Kayleigh had a much better night last night!!!

I keep all of you in my thoughts and prayers!!

Anonymous said...

Amy and Adam, this is Treshawn Collins(LakePark), Candace shared your site with me. I will have all of you in my prayers. I am glad to read that you had a good day. There are these hands that you may want to purchase Called Zaky's http://www.zakeez.com/en/home/index.php. I know as most parents who have to leave their newborn in the hospital wish they could cut off their hands and leave their warmth, scent with their baby. So this company Zaky built these incrediable things so you can do just that. They are allowed in the NICU. Again, I will keep both of you and the baby in my prayers. God Bless you!!

Erica said...

Happy to hear that Kayleigh is doing a little better!! Your a fighter Kayleigh!! Keep up the great work!! Best Wishes for you both Adam and Aimee! You are doing a wonderful job!! I pray for growth and health for you sweet Kayleigh!! God Bless!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Anonymous said...

I just heard of your story and have read on and off all morning. It brings back so many memories from our days in in the NICU. All I can say for you is to remain strong, take time with each other and enjoy the ride. It is so very much like a roller coaster ride. Personally I don't enjoy them but some do. Good luck with your blessing and we will be praying for you from Delta, Ohio.

BCND said...

I'm glad to know that you know the power of prayer. We were in the NICN last year about this time with our twin girls. They were born at 31 weeks due to a heart condition caused by TTTS. I assume you are in the South nursery if things are still set up the way they were a few months ago. The staff there is wonderful, I can't say enough for how hard they worked for our girls. They are like family to us. We were in the east and the north. As impossible as it seems now, one day you will have a normal life again. I know how hard it is to juggle a job, kids at home and the roller coaster life of the nicu. Your family will be in our prayers. We know as well as Carly’s mom how tough things can get. If there is anything we can do please let us know. Sometimes it helps to have someone who has been on both ends to ask questions. If you have a myspace you can see some of our journey at http://www.myspace.com/newdads if not please feel free to email us at bootcamp@ctc.net. We are always available for those fighting for their kids.

God bless,

Shannon

Cathy said...

Aimee and Adam,

Hi! I'm another prayer warrior from over on baby center, and I've been following Kayleigh's miraculous story. We have friend's that delivered their miracle at 30 weeks. Not too bad as far as gestational age goes, but she had a 2 vessel cord, so she weighed just under 2 lbs. There were some scary times, but she is coming up on 3 years old now and doing great!!! She is a tiny little peanut, but has no repercussions from her early arrival and rough start. She calls me "Cappy" (Cathy). She's a ball of sunshine. If you don't mind, I'd like to offer a prayer...

Heavenly Father, I ask that you hold the Freeman's in the palm of your hand. You have a plan for Kayleigh, and we know you love her beyond measure. Please Lord, we humbly ask for: her breathing to improve and for growth so that she can have the surgery to repair her VSD. We pray that the doctors treating her have wisdom and guidance from you (the ultimate healer). I also ask for strength and endurance for the Freeman family as they walk through this struggle. May they feel your presence and love every step of the way. In Jesus's name, Amen

All the best, Cathy in Ohio

Jennifer said...

i can relate to what you said about this being the most stressful time in your lives. i felt the same way. it changed who i am.
take it one day at a time. this will make you a stonger person and family. be good to yourselves and know that this too shall pass.
jennifer (mom to 30wkr)

Erika said...

Glad yesterday was a better day for you Kayleigh. Just wanted to let you know that a complete stranger from lil ol Massachusetts was praying for you. I came across this blog awhile ago...not sure if you have read it before ...but its about 2 twin girls born weighing just over 1 pound. Thought you might enjoy reading it
http://micropreemietwins.blogspot.com/2004_08_01_archive.html

Andrea said...

I had a baby boy on May 16th at 30 weeks. He was 4 lb 9 oz.....which is HUGE for that stage in the game as I am sure you know. It was quite the roller coaster for us a we were on vacation when he was born (in South Caroline of all places), but your story makes mine seem so easy. Your beautiful daughter is in my prayers!

Andrea