First off, let me tell you about Kayleigh before I go in to what was so amazing that happened today. AHHH, I can't wait to tell you!!!
Okay, first off, Kayleigh had a much better day than her last few days. She was no where near as irritated as she was which only means that whatever was bothering her is slowly dissipating (HOPEFULLY). She met with the PT (Physical Therapist) today and she said Kayleigh looked great and she was not grumpy when she stretched her arms and legs out for her workout. The PT comes once a week to give Kayleigh a workout to make sure her range of motion is good and there isn't any physical complications.
Kayleigh also started her feeds with the Neocate and at first she was having some aspirates, but she had none when we were there for her 3 o'clock cares. She took all 3 mls with no problem at all. Let's now hope those 3 mls find their way out of the body without any issues this time around. Being that they use the Neocate as a last case scenario because it is expensive, I don't know what else they would do if this doesn't work. Cross your fingers and say your prayers.
I got to hold Kayleigh for almost two hours today and she was perfect the whole time. She got a little grumpy towards the end, but it was time to do her cares. I am guessing she is getting used to waking up every three hours for cares. We were so happy to see that she was relaxed and sleeping peacefully. We changed her diaper and she pooped a little, but almost peed all over Cynthia. Kayleigh also held her temperature very well when she was out.
OKAY!!! Are you ready for some awesome news???? If you have been following our story from the beginning, you would have learned that quite a few doctors agreed that Kayleigh would not make it to term. She had too many issues that pointed to an outcome of her not surviving much longer. This was a ten week battle to gain enough weight for viability. When we got the news from one doctor who told us not to change our normal living schedule because it is inevitable that Kayleigh would die, we decided to get a second opinion. The second doctor we spoke to hit us with the same news, but had much better bedside manner. We were still given a very very small chance, but they knew we weren't giving up without a fight. That doctor emailed Aimee and I this morning to ask how Kayleigh was doing. We were so excited that the doctor contacted us, even with his busy schedule to ask how our little girl was doing. That right there shows a lot about a person. (Here is the exciting part) As you know, Aimee and I want to share our story with anyone and everyone to give them the same hope that we were given by so many of you, well...He is speaking at a medical conference tomorrow and wants to share Kayleigh's story with many other doctors to give others hope. He wants to inspire people that no matter how bad a situation looks, it is important to have hope. HOW AWESOME IS THAT???? Below is his email that just makes all of this hard work, stress, anxiety and insanity worth while.
I am so glad things are well.
I hope things go well with the genetics doctor.
I look forward to meeting Kayleigh and seeing the 2 of you in the near future.
Tomorrow I am speaking in a Medical Ethics conference and I am hoping that you might allow me to share some of your story (without names, of course). Although it is a conference about end of life care, I get to talk about care at beginning of life! . . . and HOPE. . . especially when things look worrisome. I think your story would be inspiring and would emphasize the importance of hope. . .
If you prefer not, I certainly will respect that.
See you in the near future,
That is exactly how I want to glorify God with the situation He has given us. I want nothing more than to spread the word so others will have hope, and that is exactly what has been happening. I have had so many people share their stories on how Kayleigh has made a change in their lives and now I can reach out and touch the lives of doctors who at first hand that can give their patients hope. Beyond all of my triumphs in my life, helping other people make a change for the better in their lives has been the most gratifying of them all. I feel like God has used Kayleigh in my life to help others find hope and that is exactly what I am going to do.
Thank you all for your prayers, words of encouragement and just plain being there for us.
God Bless!!!
The Freemans :)
11 comments:
Absolutly awsome post!! Glad Kayleigh is feeling better and that's great that you story will go even futher. Maybe to some of those doctors who are strictly text book! Maybe now there will be more hope for sick babies to come!! I pray that God really uses this man to reach out to others!
In Christ,
Rachel
That is SO AWESOME! God works in mysterious yet wonderful ways. I'm so glad that Kayleigh isn't as grumpy as she has been, no one likes to see a grumpy baby.
God Bless,
Kelly
micahsmommy1229@yahoo.com
I am a firm believer that when you speak negative it does manifest itself realistically. But, thankfully, in Kayleigh's case, everyone of us out here have been speaking and praying positive things. Thus, she's ALIVE, and WELL!! So, this goes to prove that what we also say positively, renders positive results!! Right?!
My prayer is also that this physician can encourage others in similar situations to have FAITH and HOPE!!! It truly works!!!
Thanks for not giving up hope on your daughter and for sharing this sweet journey with the world. May she continue to minister to the world with her story!
I am so glad Miss Kayleigh is working out all the bugs and feeling better today. I look at her photos of the last couple days and she is actually getting pinchable cheeks. She is thriving dispite all the drama. GOD Bless Her!
God Bless all of the doctors and nurses and the Freeman family for doing your will!
Also keep Adleigh safe and hold her family close in your arms as she goes through her surgery and bless her surgion with steady hands and a clear mind to help all of them to do your will. AMEN
Awesome, so glad she is feeling better. Praise God that this Doctor can share your story, to reach others who have lost faith. We are praying daily for your family, every picture of Kayleigh reminds me of Gods work. She is a true fighter and blessing, God bless.
~Nicole
Dear Freemans,
Hi my name is Kristen, and I must start off with OUR GOD is an amazing God! The other day I went to add my son to the contest on Parents and ran across a little picture of a beautiful little girl named Kayleigh! As I sat at my computer reading your story the tears filled my eyes because you three are just so amazing! To have such a trial before you but you are using it for Gods glory! I felt that he has lead me to your story for our story starts in a hotel room at Disney World of 07ʼ! April 07 got a positive pregnancy test and we were so filled with joy because God had spoke to me and told me that he was giving us a beautiful baby, but I just didnʼt know when it would happen! As time went on everything was good baby Clawges was healthy and due Dec. 9! At 25 weeks I got high blood pressure and things started falling apart from there. At 34 weeks I stopped feeling him move so I headed to the hospital where something amazing happened and it only could have been gods work. With pain in my upper right side they were checking to see if my organs were shutting down when the nurse pushed on him to move him out of my ribs my water broke! Not know it because things happen when you get that far along LOL! The test to see if my water broke came back negative so I sat at home for a week leaking little by little. I switched doctors for a second opinion the following week to find out that it was my water and that I needed to be sent to high risk labor ward since he was coming early and with high blood pressure. I was in labor for 38 hours when I delivered a beautiful little boy named David weighing in at 5lbs 9oz and 18in! When I delivered I didnʼt even get to see him because they had to rush him to the nicu because he had the cord wrapped around his neck twice and a true knot in the cord! From this he hung himself coming out and caused him brain to hemorrhage. The doctors told us to expect cerebral palsy and retardation because the bleed was so bad. He spent 2 weeks in the nicu learning how to eat and all the normal things that you are experiencing like making sure he could have bm, and keep his temp. Any ways here is one amazing thing if I would have carried any further I would have delivered a still born due to the cord being so knotted and from getting a negative test for my water breaking his lungs developed more than if my water wasnʼt broken . For my water breaking by someone pushing on him should have never happened but I see it as it was Gods plan for he knew the out come if I would have went 6 more weeks. Also for the ending of this and to give you a bit of light when we went home with David they just told us what to look for if the bleeding would worsen and to come in right away if he started acting funny! The doctors made him an appointment in Jan for another MRI to see how the bleeding was doing. That was the longest 3 months of my life and somehow you start to blame yourself for everything. I would sit with my hands on his head and pray that God would heal the unperfected! Even tho times are tough I know that Gods plan is the best plan and that he loves us and wouldnʼt give us anything we couldnʼt handle! As I finish writing you I want you to know that God does hear us and he sees our tears for I have a miracle baby that god has touched! See in Jan for his MRI we went in for the results and the doctor we had that day was new to us so she read the before results and was kinda in shock of how bad the hemorrhaging is and told us everything bad that was about to come true for our little boy. As she turned over the page of the new results as she read them to her self first I saw her reread it again and then to us ok get ready it read the pervious bleeding detected in Nov has been completely resolved!!!!! That is our god and he is alive! Most of all I want you to know that I share your pain but most of all I share the joy of your beautiful little girl that god will use for his purpose. She will have an amazing story to share one day for she has already touched me with her courage to keep fighting. I also know that God has given me three new friends to add to my prayer list. By the way I was so excited to see you glorify god in all of this and when I saw the link to your church I was awed that we live in the same city! I think Iʼm going to have to try it out. Well, I hope this finds you all well and God bless you!
Kristen
Hi there,
I just wanted to say that I have been reading Kayleigh's blog for a couple of weeks now (I found the link on Ovusoft) and I am so happy that she is doing so well. I have been praying for her and the rest of your family as well! God truly is amazing. I am so glad that he has provided an opportunity for Kayleigh's story to make it farther into the medical community - hopefully that will teach some doctors that miracles do happen! I will continue to pray for Kayleigh that God gives her the strength she needs to continue to grow and that he'll use her life as a lighthouse for those who are in similar situations.
God Bless, and thank you for sharing this story!
I am crying here now. That is amazing news!
-Beth (Houston)
I am a random reader and I do not remember how I came upon your blog but I am glad that I did. I have been following for a couple of months and your story has inspired me so much. A good friend of mine had a baby boy yesterday. God is GREAT! He is so very precious. He is in NICU right now because he will be needing surgery due to a minor stomach problem he developed while growing inside his mommy. I got to go inside of the NICU with my friend yesterday and let me tell you what...it was one of the most eye opening experiences I have ever had. As soon as I went through the door and saw all of those little babies in the NICU I immediately thought of Kayleigh and the two of you and what you all go through on a daily basis. I do not know how you do it. It was amazing to get a first hand look at what goes on inside of an NICU and I have such a greater respect for families who have their precious little babies in a NICU...I just wanted to share my experience with you to let you and your family know how your story has impacted my life. I've also shared your story with some friends of mine and we are all amazed and the wonders that God has done on your beautiful little girl. We can't wait to see what else is in store for your little angel. Take care :)
Heather
What wonderful news! I havent been on in a few days and Im so happy to hear Kayleigh is doing better. She looks wonderful in her pictures, I love the one of her yawning or crying. Whichever it is she looks adorable doing it!
Babyksmom05@yahoo.com
I'm glad she's feeling better. Probably just too many procedures in a short amount of time. I love the pic of her yawning! So cute. She's looking much bigger lately. Amazing how 1 pound can make such a difference.
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