These were a couple photos that I took over the last two days. Don't you just love her ear muffs?!?!
First and foremost, I am loving Twitter so you all can get the updates on the blog and Facebook on a regular basis. I will still continue to update the blog every couple days, but mainly to recap and show photos. If you haven't joined up, go to the right tool bar to follow the daily updates by reading along or getting text messages to your phone
This has been an awesome start to a brand new year. The year 2008 is over with and hopefully so is all the drama that came with it. Kayleigh continues to surprise us all with her strength as she tackles these issues like a champ. Just the other day, she was having another hypertensive episode that was so intense, her heart rate was dropping because it could not keep up with the massive amounts of pressure coming from her lungs. Falling deeper and deeper in to trouble caused the doctors cancel the jg-tube procedure, but we all know who really didn't want that procedure to happen. It is by miracle she didn't go through with it because her little body might not have made it through.
Thank goodness it was cancelled as she is doing better now than she was prior to her nasty episode. In fact, the doctors are thinking about not even completing the jg-tube procedure in the future after gaining pertinent information from the CT-scan that was performed yesterday. Kayleigh lungs have made significant improvement after the pneumonia and her previous x-ray that showed more left sided lung deflation. The doctors feel that if there are any signs of issues that could be caused by mircro aspirates/reflux, they may consider doing the jg-tube later. But for now, she has a tube that goes through her nose, past her stomach and in to her intestines. She is currently on 6 mls an hour, continuously and tolerating them very well.
Yesterday was a very stressful day as the CT-scan procedure was pushed back twice and the fear of Kayleigh falling in to another pit of hypertension. It took 6 people to transfer her down successfully and I don't think any of them took a breath until she was back at her bedside safe and sound. She made it through the scan with flying colors and is continuing to make unbelievable progress. The scan showed a couple blemishes which were left over from the pneumonia, but nothing out of the ordinary that concerned them.
Kayleigh is currently on very low vent settings and the doctors are talking about extubating her in a few days if she continues to do well. It just amazes us to see how quickly she can bounce back from facing death one week to feeling as great as she is right now. She is still irritable, but no where near where she was and each day that passes by, you can see the difference. Last week she would desat at the sound of a pin drop and this week, she is wide awake, practically off all of her pain medication and will barely drop her sats at all. God is certainly in control of this little girl and to see the miracles that are performed day in and day out are beyond any experience I will ever face again. If you think this blog has been exciting, you should have seen this first hand :)
So as of right now, we have gotten all the information to send to CHOP (Children's Hospital of Philadelphia). They want all the information from her files and tests, so they can see what has been done and if there is anything they can do differently from here on out. If they feel they can offer something our children's hospital can't, then we will figure out a way to get her up there as quick as possible. Another major concern is if she will be able to handle the transfer. She will have to be heavily sedated/paralyzed for several hours as the helicopter ride can be very dangerous for her with this pulmonary hypertension. Our doctors have been consulting CHOP all along, so hopefully we can continue to stick it out here and not risk hurting Kayleigh in a transfer or uprooting our family. We do have family in Philly who have been gracious enough to open their homes to us if we go! God Bless our awesome family!!!
For most of you who didn't know, I grew up of Jewish faith, but became a Christian several years back. Every year my side of the family gets together for a weekend to celebrate Hanukkah and New Years. I can't believe it has been a year already, but last year at this time Aimee and I were hoping to surprise our family with a positive pregnancy test. It came a couple days later, but it still feels like forever ago. We have had an amazing time this weekend with both of my brothers and their family coming in from out of town. It is a house full with all the kids, but it is a blessing to enjoy family time and laugh away all our stress. It was most definitely a well needed weekend for Aimee and I. We are so blessed to have a tight knit family who loves each other unconditionally. We love you all so much!
Here are some photos of our amazing time together:
God Bless,
The Freemans :)
42 comments:
What an answer to prayers to read all of the positive reports about a successful CT scan and lowered vent settings. She's amazing!
Wow! I am just so happy to hear how well she is doing. I know Kayleigh is a tiger, but she sure knows how to make us hold our breath and reach a little farther down to find the faith we need to keep believing she will be home with you guys soon. I was a little fearful of the tube. I really hope she doesn't need it.
Still praying for your family. I hope your finances are getting sorted out and that Aimee is feeling better too. She looked great in her last pictures you posted, like she is getting her strength back. Hopefully 2009 will be an easier year for all of you.
P.S. LOVE the Twitter updates! It is so nice to be able to get a quick update when we are thinking of Kayleigh, which is several times a day.
She looks amazing. I am so happy for all the positive reports for Kayleigh. Praise God for all his blessings and this wonderful miracle named Kayleigh. 2009 is going to be a great year. This has made my night and I am just so thankful for answered prayers. I am still praying for Kayleigh everyday and I hope that CHOP will hold some answers to questions and wonderment if there is any other treatment options out there that will get Kayleigh home sooner. Looks like you guys had fun with the family and I know that was a much needed stress reliever. Tell Kayleigh how proud we are of her and to keep that fighting spirit alive.
all i can say is, isnt god AMAZING?!?!? i have been waiting to see sweet kayleighs face :) that made my night and i have stayed up since u said u would update with pics!
keeping you guys in our prayers!
I stayed up also - waiting to feed my grandson Tayveon his 3 am bottle AND waiting to see pictures of Kayleigh and read a more detailed update - although the Twitter updates are great! I have been following and praying for Stellan as you suggested also - and she also updates through Twitter, so I have my answers several times a day to how the "other" babies are doing! Love the family pictures, especially whoever "Dad" that is with the Ohio State shirt on - Go Buckeyes!! I'm originally from Ohio now living in NY but can't forget my Buckeyes!!!
Will continue praying for Kayleigh and all of you for sure!
following this little princess with great anticipation of what the Lord is doing in her precious heart and life....and amazed by the way the Lord uses these little sweethearts for such bigger purposes than we even know.
Thank you for the updated pictures. She is so beautiful. It amazes me to see how litle she was and where she is at now. God is working a miracle for her! As always, still praying.
Twitter updates are awesome!!
I love the pictures - she looks so awesome and so ALERT!!!
I know that 2009 is going to be a great year for your family!
What an awesome, wonderful and loving Heavenly Father we have. Kayleigh is looking great and we all know that it is by the hand of our Maker that she is here with us as God guides the hands, minds and hearts of the doctors and nurses. I am so blessed to be able to follow your progress with Kayleigh and to be able to get o know you guys better through this journey. The pictures are wonderful and they made me smile to see her. I also loved the pictures of you families New Year and Hanukkah celebration. FOr you to share even these glimpses into your life helps me to know you better and I thank you. Tell Kayleigh that George, SIdney, Katie & Steve love her and pray for her (she is in every prayer that we say throughout the day)and tell Brandon and Allyson that we say hello and we love them as well. Tell them how proud we are of them having to be strong sitting back and watching what is going on and having to sacrafice time with the two of you so that you can be with Kayleigh when she needs you.
Love Always - Katie, Steve, George & Sidney
Kayleigh is an incredible little girl that continues to amaze us. she is a true miracle and such a fighter. She isnt giving up on this fight! What a wonderful blog to read with such incredible news! We continue to pray for kayleigh....
Katie
Baltimore, MD
Wow, how incredible, God is good! Waht a strong little fighter Kayleigh is, she will surely overcome.
God Bless
Tanya
We are so happy that 2009 is treating you so well! It will be your year! I heard about little Kayleigh through thebump.com on the preemie boards and my husband and I have been following your story. We had a little girl in May who was early and small and we know how hard it is to ride the NICU rollercoaster and can't even imagine what it must be like for you guys, yet, your family is so incredibly strong! I wish you the best and we will continue to pray for Miss Kayleigh...Happy New Year!
hello i found your blog from life as a mom at 22. your little girl is adorable. im reading through all the stuff. my niece was born with a rare heart defect so we kinda now what your going through except she was not a premmie. feel free to visit there website for some inspiration if you would like www.throughthevalleyofserenity.com
What an incredible, amazing little girl you have there with you! I have been following her story for a couple of months now after finding the link on another blog - she is such a fighter. Reading everything your family has gone through as she fights each day is truly an inspiration to me. Each day reading how she keeps beating the odds and growing bigger and bigger has made me really start to dig deeper into my own life and beliefs and realize there really is something bigger and better than all of us... I defintely have started to see things in a new perspective!
Thanks for sharing your story with us - we will continue praying for Kayleigh everyday - that she continues to get the care she needs to be finally able to sleep in her own crib very soon!
I'm so glad Kayleigh is doing so great...I'm hoping this is her last hurdle and 2009 can bring her home to her own room. I still continuously pray for her and look for your updates. I like how you are able to give us quick updates, but I really look forward to your posts, like this one. Your angel is such a blessing!! Take care and keep the chins up! Happy New Year!
The Polleys
I'm just so glad to hear that she's continuing to improve. What a tough little cookie she is!
Happy New Year Freemans! =0)
I'm just so glad to hear that she's continuing to improve. What a tough little cookie she is!
Happy New Year Freemans! =0)
Hello I Have Also Been Following That Little Amazing Precious Kayleigh And Just Wonted You Both To Know That Your Kayleigh Will Be In My Prayers..She Is Such A True Gift From God! She Is Just To Adorable! And I Will Continuously pray for her and look for your updates..
hey kayleigh you look cute with your ear muffs I love them. I'm so glad your doing great keep up the good work and we will pray really hard for you that if you have to tranfer it will be a safe one. I hope ever thing comes out good and you can stay where your cumphy. I love looking at the pictures and hearing good news you need it.
love the lorec's
Sending more prayers, love, and hugs to each of you. Keep hanging in there. God continues to answer prayers for Kayleigh. Awesome!!!
Carol H.
Irmo, SC
She looks so good! I am still praying for your family. She is so cute! Keep updating I read your blog on a daily basis.
I have spent the last day reading Kayleigh's Story. I saw a link to her site on McMama's site so I came over to see what it was about. God has truly blessed you with a Miracle Baby. She is such a blessing and an inspiration! I will be praying for her each day. Praying that she continues to improve and that 2009 is a WONDERFUL year for Kayleigh and your entire family.
Prayers from Arkansas!
She looks absolutely grand! Our girls wore that shirt in the NICU too, it must be good luck. Miss Kayleigh honestly looks so beautiful in these last pics, thanks for sharing.
Still praying in OK, M
Praise be to God!
Love all of the pics!
I am so excited to hear an update. I have been trying to "follow" you on twitter but for some reason it never "finds" you when I enter in Kayleigh's name in the find box. I go straight to it from your sight but I cannot figure out how to become a follower of it. Only yours is giving me problems... uggghhh. hahaha.
So glad to hear that you all are doing well. Kaleigh looks great! It is scary to think that she could have to move but I trust that God is DEFINITELY IN CONTROL of this little miracles life!
Blessings!
Praise God for Kayleigh's improvement!
I was so happy to see her sweet bright-eyed face. How wonderful that she continues to improve daily. It really is so amazing how quickly she can recover after her hypertensive episodes. No doubt God is looking over her. I know God will continue to watch over Kayleigh, and 2009 will be a joyous year for your loving family. My prayers are always with you, and Kaleigh!
Pat
I spent the entire day reading Kayleigh's story. There's your book, Adam. Your blog is your book. Your story is remarkable. I feel like I've been on a roller coaster today. (To borrow your words.) I can only imagine how you all have made it through this. Words could never explain, but you have done very well at keeping everyone involved and praying. My four year old saw a picture of 13 oz. Kayleigh, and he said, "Mommy, that baby scares me." So, I showed him 6 pound Kayleigh and told him that God helped that baby to get bigger and we could help too if we prayed. He said the sweetest prayer for your daughter right then. "Dear God, I want that baby to get big and strong like my mommy and Jessica (a girl in his Sunday school class). Thank you for Lego Indiana Jones and my puppies, the trees and the stars, Trix cereal snacks, etc." I say "etc." because his prayers tend to ramble.
Aimee, you are a beautiful and strong woman. I don't think most people, including myself, could ever appreciate what you've been through as a mother. I won't even let myself consider it. I just break down at the thoughts of it. How you push forward for your family and continue to look radiant while you do it is a true testament to the grace of God.
I'm sorry for the long post. I have just been so moved by this little darling that wasn't supposed to make it and your incredible family.
Thank you for sharing your life.
It's wonderful to know that your little princess is better, we will continue to pray for more progress and remember never lose faith
Hooray for good news!! Praying for continued healing and improvement for Kayleigh.
She looks wonderful! Her eyes are just beautiful! I love all the positive news lately. I keep praying for her and you all many times a day!
With love from Southern NH
praise god! she is a fighter and the most beautiful little girl i have ben blessed to see in a long time may all the prayers keep coming for you and may you soon have her at home with you, the road can be long and winding but she has already proven she can do it.. my prayers to you as always
Glad she is doing better. Interesting - now I am even more eager to her your testimony!
So glad to hear that she's doing well! Continuing to pray in NC.
My daughter (24 weeker still in the nicu) failed extubating over 12 times because of airway issues. they tried everything to get her off the vent from giving transfusions to boost her crit to multiple resemic epi's to 3 rounds of steroids..and nothing worked week after week. She was on ventilator for over 15 weeks. We found out from a bronch that she developed subglottic stenosis from having a tube in so long. during the bronch she recieved a trach. she was just at the cut off weight and she has the smallest trach they make. this was 2 weeks ago. since then it is like she is a new baby!! She had never had a bottle before then and now she is eating about 80-100 cc with every bottle! If Kayleigh ends up with a trach, feel free to email if you want to talk about it more (raxraxx@hotmail.com) I know no one wants to see their child with a trach and it comes along with extra special care too.
father i come to you this very minute with Kayleigh. her surgery will begin. please please give the med staff working on this procedure a very steady hand, give the quickness they need to enter the upper part of her bronchia. father, give her parents peace and comfort in the name of jesus...it's all in your mighty hands. in your precious and mighty name..we love you lord, AMEN!!! go kayleigh go! i pray and hope that all things go very well. your in my thoughts now and always miss kayleigh!!!
Glad to hear the procedure is over, now just hope they can figure out what is going on! Kayleigh you continue to be such a strong little girl through all of this! Hoping and praying for more positive updates.
Laurie in SD
So HAPPY to hear that the bronchoscopy was a success that they didn't find any major issues. My son has had a few of them, so I am sure she will be a little uncomfortable for the next few days - but she is such a trooper. We will continue to prayer for your sweet darling baby
Liz
Hi, I'm new-er to your blog and have only commented once or twice before. My twins were born at 33-1/2 weeks, and one of them had several structural anomalies, which resulted in her needing a trach for just over a year.
When you mentioned that Kayleigh's airway will collapse because there is no pressure to hold it open, that sounds like tracheomalacia to me, which is what my dd had/has. However, that would be something they should be able to see with a bronch (sounds like they performed a bedside bronch). Regardless, I hope you get some answers soon!
If Kayleigh ends up needing a trach, I can tell you that it's not as bad as you might expect. I can also tell you that I prayed, and begged, and pleaded with God that my dd wouldn't need a trach and that I wouldn't need to have the strength to deal with that too. When I saw her with the trach for the first time, I ran out of the NICU in tears.
But... the nice thing is, your baby is much more comfortable because they don't have that tube gagging the back of their throat all the time, it allows them to wean from their sedation, makes them easier to hold, and it's amazing how you just won't even notice the trach after awhile.
It's also super nice when they wean off of the vent/CPAP onto a "nose" (small filter over the trach that acts like our noses do) because then they don't need to be connected to anything. (An Aqua N is the type of "nose" we used. It's used more with babies and preemies because there is less resistance than the T-shaped nose. They also have noses you can bleed in O2 through, if necessary.)
Once you learn how to suction, you can be way more involved with her cares, which is another really nice thing.
I hope Kayleigh can wean off enough to be extubated. That is my prayer. However, if a trach becomes necessary, then please be comforted that it's way easier to have the trach in place than to see them orally intubated and basically "snowed" to keep them quiet.
Your sweet Kayleigh is certainly a miracle!!
Hi Adam and Aimee, I just started reading your blog when Mckmama put on hers to pray for Kayleigh.There is a really cool website called wishuponahero.com that you can go to and put any kind of with you want on there. There are always prayer requests on there. That might be another way to get more people involved and praying. I am praying every morning for her and for your family.
Faith
What a blessing family can be and to think on the miracle of Hanukkah and the miracle God is doing for you precious little girl I pray she grows into a strong Godly woman with such a great witness to others.
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