1/11/09 - One Tough Cookie!!!













Can you tell Kayleigh doesn’t like to lay on her back anymore? Actually, she was fine for about 30 minutes, but soon wanted to be put back on her tummy. She is so picky because she used to never like being on her tummy. I guess she likes to keep us on our toes, which goes along with everything else she does or doesn’t do. Her file is going to be named the “Kayleigh’s Way” file and her WHOLE file is going to be a “case study” for other doctors to be cautious about. It will read, “Handle with care, unpredictable baby syndrome”

Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh’s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing with the pulmonary hypertension, respiratory difficulties, micro-aspirations, possibility of going to CHOP, and normal everyday care, there is bound to be some confusion here and there amongst everyone involved.

Speaking of issues, everyone knows that I don’t like to complain about the treatment we are getting because it has been practically flawless. But….and there’s a “but” in here! I received a piece of paper yesterday that explains the vaccines that Kayleigh just got. I was reading one of those sheets just after signing the approval form and it states that the vaccine is to prevent pneumonia as pneumonia is one of the deadliest infection for newborns up to five years old. So, I kept reading and this vaccine was supposed to be administered at 2 months, 4 months, and 6 months. Hmmmm!!! I think we have a problem here, don’t you??? After reading this, we asked the nurse practitioner why this hasn’t been done at the scheduled periods and the response I got was that Kayleigh wasn’t well enough. Before I about went off the deep end, I quickly reminded her that Kayleigh almost went home twice, so if she was well enough to go home, then she should have gotten these vaccines. Needless to say, the NP didn’t say anything else but that they would look in to it a little further. Our primary nurse looked all through our file (twice) and there were no records of any vaccines. It makes you wonder though, if Kayleigh would have had this vaccine, would she have been so susceptible to the pneumonia that just about took her life?

Anyhow, I’m sorry to get you all as fired up as I am but there is no room for mistakes with “our” precious Kayleigh and I need to get to the bottom of that.

Moving on…As of right now, Kayleigh’s Pepcin test that was sent off to the labs has come back confirming there ARE micro aspirates in her lungs, which are causing damage to the lung tissue. To fix this problem, they need to perform the Nissen surgery, where the doctors tack up Kayleigh’s stomach to eliminate the chance for aspirations. Our stomachs are horizontal at some places, causing acids to build up and when refluxed, they are aspirated in to the lungs. When the doctors tack the stomach up, it makes the whole stomach vertical which will then prove the law of gravity by allowing everything that enters the stomach to continue on its expected path.

While they perform this surgery under anesthesia, they will also insert a G-tube, which is a feeding tube that feeds directly to the stomach instead of having a tube down the nose anymore. This will also allow the airways to heal quicker without having another tube in there. That leads to the next surgery which is the tracheotomy. If the time that Kayleigh is on the vent for the next week or two while they perform the Nissen/ G-tube surgery to allow time for Kayleigh’s airways to recover and she can be extubated successfully, then she will not need the tracheotomy. Let’s hope and pray that she doesn’t have to get that. I heard it isn’t too bad, but after talking with the nurse about the possibility of full time home care, that will be quite an adjustment. Either way, we would make it work though!

On a really great note! Kayleigh is down to 6ppm on her Nitric Oxide, which is the lowest she has been in a long time. That goes to prove her pressures are still reactive and she could still grow out of this hypertension if she stays healthy and grow. With the doctors fearing her pressures were fixed, we were afraid she would never come off the vent and take a turn for the worse, but ALL of your prayers have worked again! Can you believe this amazing work God has done on Kayleigh? It is so evident that He is hearing all of our prayers and continuing to show us how powerful He is. Man!!! I am just so pumped up about her progress that I feel every ounce of excitement in my stomach. It feels as if I am going to burst from the inside out and I want to scream until my voice becomes horse.

Doing God’s will together!
I took the initiative to provide some website/emails of some great possibilities to spread Kayleigh’s story to reach families out there who need to hear it. Whether it is to bring them closer to God, bring their family’s closer together or just give them hope in their own journey’s. Here are a list of local news, local newspaper and some national television shows (links) that I could find for everyone to email. I have written them already, but these producers need to here it from you all. They need to know about Kayleigh and how she has touched your lives, plus it wouldn’t hurt to gain some more prayer warriors. So, if you write your quick message, copy and paste it to each link and send it, we may be able to share our story to millions and what blessing that would be. Make sure you include the blog site so they can be captivated in to learning more. Thank you all so much for your help and let’s do God’s will together. Amen!!!


Thank you everyone for everything you have done for our family. We not only pray for Kayleigh to make it through this journey, but we pray that every single one of you find a purpose through Kayleigh's story. She is certainly one tough cookie, but beyond beating every obstacle in her way, she has taught so many people how tough God is too.

God Bless,

The Freemans :)

67 comments:

Hollie said...

Sweet baby girl! She looks so happy and content on her tummy! Praying for all of your specific prayer requests...and for Mom & Dad as well!!

Anonymous said...

We are so happy to see her doing great!!!!!!!!!!! We will do what we can to tell others about Kayleigh.

STEPH said...

I am so glad hear that she is doing good.. I wanted to tell you .. My little girl had that Nisin and a g-rube placed about 1 yr ago and we have noticed such a difference in her weight gain.. When we had the g-tube placed she was 19 pounds and she was 6 yrs old..since then she has gained 10 pounds and it's been about a year.. Then she kept getting pnumonia because she was aspirating so bad so we had that Nisin surgery..let me tell ya it was so worth it.. her healthhas been so much better since then.. I hope and pray that your little one will have the awesome results that Faith has had with these procedures.. Also Kayleigh could have had that pnumonia from aspirating.. that's how we found out faith was... I don't know just a thought.. Ok well I will be keeping you and your fmily in my prayers..
stephanie from Oh

Karen in Long Island, NY (Tayveon's Grandma) said...

I was thinking the same thing about the pneumonia - and the vaccine - that she could have had the pneumonia from aspirates, which the vaccine couldn't have prevented - the only way I know this is because my dad had oral cancer, and while being treated he got pneumonia and was hospitalized over Christmas in 1998 - and it was because he wasn't able to swallow properly because of the treatments - it was "pneumonia" but it wasn't bacterial or viral - which is what the vaccine targets - but aspirate - which could be what Kayleigh had - But its great that you are having a meeting with all her caretakers involved to get on the same page - that will definately help! I am at work on Monday morning but I'm off to email every single link you sent - I've sent to Oprah, Ellen and the Today show already several times, but am going to do it again so that they get flooded this week!! Its a New Year - time for new programing and something like Kayleigh's story needs to reach as many people as possible!! Hugs to your family from my family!

Kristin0821 from BBC said...

Thanks for sharing more beautiful pictures of your sweet baby girl. I love the close-up of her sleeping. Absolutely precious!

I have certainly never been in the position you are with Kayleigh but my pediatrician refrained from giving my youngest vaccines for quite a while after she was born. She's 17 months old and we are still fairly far behind. We were trying to determine what was causing her problems and our ped's thought was that if you give a vaccine and something new appears, they wouldn't be able to determine if it was due to the vaccine or a new problem. Many of the vaccines can cause fever, irritability, etc. Maybe they were afraid to add anything to the mix?

I will pray that the nissen surgery and the g-tube surgery go smoothly and that you will soon be able to bring Kayleigh home to her beautiful pink and brown bedroom! :)

God Bless,
Kristin0821 from BBC

Anonymous said...

She looks wonderful! Even the pictures where she is throwing a fit are great and adorable! Even better you didn't mention her going into an "episode" when she was having her fit!
I will pray that the surgery goes perfect and she continues on the road to recovery.
With love from Southern NH

The Woollard Family said...

She is such a "tough cookie". You are so right about that!! We are all very excited to hear the great updated news on Kayleigh. When is the next surgery planned for?

Heather, Joseph, & Bailey Alyse Woollard

Wetumpka, Alabama

Hayley said...

Kayleigh you sure are one tough cookie!! Keep doing great and I hope that everyone can get on the same page so that she can come home soon!!!

Anonymous said...

My son was born at 25 weeks (1 lb) and didnt recieve the vacs. until much later. The NICU docs. didnt want to add them to the list of things he was going thro. because they tend to be so harsh on the system. Plus with the whole Autism links because of the vacs. being given when a childs system isn't strong enough to get them I didn't want him to have them until he was strong enough to with-stand the fever and such that comes along with them.

jlwgator said...

WOW I am amazed at how strong and alert she looks in your pics. Congrats! Quite the little fighter.

As for the vaccines, I think they did the right thing. Vaccines can wreak havoc in an already weakened/compromised immune system, and they would have given her a dose that a baby much bigger than she is would have gotten. They don't alter the dose of the vaccine based on the baby's weight, so giving shots to a 2 lb baby vs. a 10-12 lbs baby the same age is risky. My baby was only 9 lbs at 2 months of age when she got her 1st shots. That was small, but a lot bigger than Kayleigh. You can work yourself up into a frenzy stressing out about whether she would have gotten pneumonia or not, and you never know if she could have even tolerated the vaccine in the first place. I wouldn't get all upset about this b/c they probably were doing the right thing for her. Also, you will be ok with the delayed or split vaccine schedule as long as you are starting now. The problem comes in when people try to delay shots until the baby is past 2 years or so.

I hope one of these shows will pick up your story soon! Good luck and best wishes for continued progress with baby K.

Jennifer said...

I can hear the screams coming out of that 3rd picture. I've been praying for that precious baby ever since I found your blog. God bless you and your family.

Jennifer said...

It is so good to hear the sweet Kayleigh is continuing to show her strength!!! I will definitely be writing to those shows. So many people can find strength in their own lives from this story.

Jennifer said...

It is so good to hear the sweet Kayleigh is continuing to show her strength!!! I will definitely be writing to those shows. So many people can find strength in their own lives from this story.

Jennifer said...

One more thing. You had mentioned earlier that there had not really been any interaction that you had seen from Kayleigh. Has that started to happen yet?

Courtney Paris said...

Re: Kayleigh's Vaccinations.

Both my kiddos spent time in the NICU, my son Conner for a crazy bacterial infection that almost took his life and my daughter 'cause she was 5 weeks early.

The most important thing I learned is that we MUST be our own children's healthcare advocates. The drs and nurses are simply much to busy.

Now this isn't to say that you need to walk around 2nd guessing the drs every decision, but be aware and be educated and don't be afraid to ask questions.

I'm following your story and praying for you every day!

Mel said...

She looks so good!!!
Just as info., our girls didn't receive scheduled vaccines until after discharge from NICU either. I don't know if it is protocol or what, but we were told it was best to wait.
Still praying, M from OK

Anonymous said...

My son also had the Nissen surgery and g-tube on October 6,2008 due to micro-aspirations that was effecting his chronic lung disease and not allowing him to be weaned of his oxygen and he also had pneumonia prior to this surgery and almost did not make it. Since Sutton had the surgery he has made a drastic improvement. He discharged from the NICU on 11/6/08 after 100 days, without oxygen and we were told he would probally be on oxygen for at least 1 year (prayer does work) and the g-tube feedings are going great and we are working on taking everything by bottle. Good luck and we are still praying for Kayleigh.

Emma and Mommy said...

My daughter Emma has a nissen/gtube an trach, and is also on a vent.

I pray your daughter does not need the trach, but know that even if she does things will be ok. We don't have any nursing help at home anymore and things for us are going well, we have to provide extra care or selves but it becomes second nature and you don't really think of tube feeding or suctioning a trach anymore than you do changing a diaper.

We have been praying so hard r ittle Kayleigh, and she is such a fighter, I just know things will be great in the end and she is such an inspiration

hollylorec said...

kAyleigh i'm sitting here reading about your progress, I'm going to pray for all the dr's to get on the right track also pray you will go through the surgery well god still has his hands on you telling you what is right and wrong thats why you dont like your back, someday you will. Mom im not there but my heary is like your about the shot. but we will be praying everything will come out great you keep fighting Kayleigh and grow big and get the surgurys dont so you can get home with every one.

WE LOVE YOU MOMMMY,DADDY,KAYLEIGH AND FAMILY

Evie's Story said...

I just shudder for you - you have every reason to be worked up. We've had multiple similar scenarios with Evie. SO hard to feel the weight as a parent of being their advocate.

Praying for the big meeting coming up!

Adam and Sherry said...

She looks so great! When you said Amiee was holding her i started to cry. I can't even imagine her joy when she finally got that sweet little girl in her arms again. Being a mom I can't even imagine the heartache that came with not being able to hold her and comfort her in her time of need.
Just a side note my little guy didn't get any immunizations in the NICU either. I was way concerned about it too but even his doctor is taking it slowly because he is so small and they can't give them their shots till they are a little bigger. Our doctor also had some other shots that he uses for preemie's that are combined so they don't have to get as many pokes. He figures they have had enough and I know with Matthew his legs were so tiny that he couldn't handle more than one per leg. But he is 3 months now and has only gotten the shots he should have gotten as a newborn. So I dont' think they did anything wrong I think it just must be standard procedure or something. But she looks awesome and I am so glad there is a plan of attack for her.

Carly Nicole Elliotte My Micro Preemie said...

So glad to hear kayleigh is doing so well. She's getting so big. I pray that all of the procedures at hand go smoothly.

BTW...Carly NEVER got any vac. She lived for 4 months and got none. They said she was too small and too sick to get them. They were afraid of the side effects it could have on her being so tiny. I don't know all the ones she should have gotten but I know there was a few. I did sign to have them done they just kept putting it off. I do know however she did get a shot for RSV because there was a baby in our nursery that caught it and they gave the injection to all the babies in that nursery. I don't think though in Carly's situation the vac. would have made much of a difference.

I hope you get all of that straightened out though.

In Christ,
Rachel

kristyo15 said...

My heart melted with the picture of Aimee holding Kayleigh...I'm sure it made Aimee's day and Kayleigh's too! Praying that she continues to defy the odds! Go Kayleigh!

Jon and Tiffany said...

Wow!! Kayleigh is getting so big!! She is such a little angel. We will def. pray for lungs to get stronger so that she is able to get off her vent. I know from experience how important it is to see your little one off of the vent! She will get there!! I love and admire how postive and faithful you have been through this entire process! What a witness your entire family has been!!! God will truly bless you for that!!

Thank you for sharing you little angel with us!!

Love,
The Michaels
(mom of quads GGGB)

lmt1073 said...

What a sweet angel! Glad she is doing better. My prayers are with you and your family each and every day!

Anonymous said...

My daughter is an ex preemie, she was 1 lb 30z. We transfered her to CHOP after 3 months and they really are the best. They have the best Cardiologist for pulmanary hypertension there is. Our daughter did come home with a trach and vent, but it retrospect it was the best thing we could have done for her. She is developing great, sitting on her own and learning to crawl. I know as a parent in your position a trach sound like the worst think there could be. For us, it was our ticket to get her home with her parents and sister and out of the hospital. I hope that this is not the course your daughter will take, but know that if it is, you will be able to make it work. It is amazing to see what these kids can do once they are OUT of the hospital. Good luck and sending some prayers your way.

Preemie Mom

Smith Family said...

Many prayers to you and your little one! My son is ex preemie. I was due 11-5 and he came 7-23 at 25 weeks 1 lb 12 oz! He came home 2 weeks before his due due and is currently 10 lbs 8.5 oz! Good luck and I cant wait to see pics of Kayleigh when she is home!!!
Prayers going up.

Anonymous said...

I totally agree with the pp about CHOP....please consider this as they have some of the best docs/research etc available on the east coast. I know it would be a hard and stressful transport....but it may be your way home. Keeping her and you in our prayers!

Dina0610 said...

I have been following Kayleigh's story from the very beginning, before she was even born - and I pray for this tiny little angel all the time!

I just wanted to tell you, and I hope you don't mind, but I've given my daughter Kayleigh's name. I have a 9 week old baby girl at home and I couldn't help but make her middlename Kayleigh. It's because of your little girl, that I did this. To me, Kayleigh now means: miracle, fighter, hope, angel, love, precious gift...... and although Peyton was blessed with perfect health so far, I felt she had to have Kayleighs name.

You must be proud to have such a sweet baby girl, and one day you will get to look back on all these mountains you've climbed, and walk your sweet sweet girl down the aisle. I know it will happen.

So thank you for sharing your story, and allowing me to share your story one day with my little girl.

Maria Fernanda said...

I hope in God that everything goes well, but not complicate his recovery, we will continue praying for kayleigh.

Sorry if our English is bad because we speak Spanish.

Maria Fernanda family

Penny said...

Bless you all and Kayleigh! I found you and have been "catching Up". What a roller coaster you hve been on.
Prayers coming in for your sweet Kayleigh and the whole family. I will work on any ways I can think of to get her story out there.
She is such a miracle and is beating the odds big time.
So glad she is getting better by the day.
Our church and wonderful prayer warrior ladies group will be lifting you all.
What a blessing to have such great detail in the blog. What a huge committment you have made for your sweet little girl.

Lisa said...

Freeman's:
Be glad that Kayleigh didn't get a vaccine during her weakest time. They are full of toxins and growing brains and bodies can't handle them. She is better off without any of it.
Big HUGS!
Lisa
Chicago

Lori (mommy to a 25 wker) said...

Hi Adam! I was wondering if you could ask Kayleigh's prayer warriors to say a prayer tonight for Samuel. He is a former preemie. He is now fighting for his life and on ECMO. His mother Missy has a blog also. If you wanna read about his story. I believe he is now 3 yrs old.

http://missyknight.blogspot.com/

Thanks a million!!

Still praying for Kayleigh!!

Lori (mommy to a 25 weeker)

Melissa Loss said...

She Looks so Beautiful!! How wonderful to see her mommy holding her! Praise God! She is a miracle!

Anonymous said...

Come on Miss Kayleigh no losing weight!!! I didn't like reading that this morning :( Let's pack on those grams/ounces today!!!
With love from Southern NH

Debbie said...

Praying for Kayleigh this morning. Pack on those ounces little one. Also, remembering Mom and Dad too. Keep the faith. You guys are champions in my book ... :)

Debbie
(Nanny to a 27 month old grandson)
Columbia SC

Karen said...

Will pray for weight gain today for Kayleigh - and have gone to see Sammy's web page and am praying for him as well - I have an account now so instead of signing as Karen in West Babylon NY or signing as Karen Tayveon's Grandma I'm now just Karen with a 2 entry blog - hoping to get more posts some day soon - Have a wonderful Tuesday - hoping to hear more good news!

Lori (micropreemie mommmy) said...

Such a beautiful soul you have! Thank you for posting the prayer request for Samual! Prayers are being heard this morning!!

Kayleigh! No!! No losing weight! I will pray for her to gain gain gain!! But not to fast..dont want those docs. to think somethings going on!

Amber said...

She is just so precious and I take time out each day to pray for this sweet little angel. I hate that she has lost weight, but with all she has been through hopefully now she will start to pack it on since she is feeling better. I will pray for her to gain weight and to get through these next procedures that will come her way. She looks great though, and her color and demeanor is awesome. I will also say special prayers for Samuel, I visited his blog and have lifted him up to God to help him fight this situation he is in. It sounds like things are starting to get better so I will continue to prayer because through God all things are possible. As soon as I get a break from my busy schedule this week I promise to email all the websites you have placed on the blog. You guys and Kayleigh deserve to be recognized for all of the great things that you are doing to show how faith, hope, love, and pray will endure all things and that with God on your side the possibilities are limitless.

God Bless,
Amber

Ally said...

Beautiful baby girl!

How big is she now?

I'm very glad I found this blog, Kaleigh & your family will be in my prayers!

Ginny said...

Hi. I have not commented before, but have been reading Kayleigh's story for the past few weeks. She's certainly a tough little girl!

Just wanted to comment about the vaccine issue. In my opinion, her doctors were very smart in not giving her vaccines on a normal infant schedule. As other posters have commented, the dose given is not altered for a smaller baby. A two month old, who was born at full-term, would weigh many times over what Kayleigh did when she was two months old. Her little system would have had a very difficult time handling the vaccines.

While I do not have a child with autism, the current statistics are tough to argue with. There is definitely a connection there.

I hope Kayleigh continues to make progress toward going home!

Ginny said...

One more thing....

while neither of my boys were preemies, my second was in the NICU with a Strep B infection. The normal vaccines that are given right after birth and before the baby goes home were not given to him. His NICU nurse said he should wait and have them at his check-up with his pediatrician. Even though he was full-term, his little system had been thru the wringer fighting off an infection that nearly took his life. I wasn't as informed about vaccine risks back then as I am now. Now I know they were trying to put as little stress on his system as possible.

Anonymous said...

Dear God,
please help Kayleigh show these Dr's that they are wrong again and so that she won't have to get the trache. She has pulled through some much that i know she is going to continue doing so, but i thought that i would put it in a prayer also for you to hear.


Adam and Aimee,
Keep going strong for Kayleigh and make sure you are taking care of yourselves also, because she need you guys to be strong with her> It is because of your guys continued strength and not giving up hope on her is why she is doing so well. if you guys need to talk to anyone we are here for you.
Love Brandi Ortiz and family in ohio

Anonymous said...

Your daughter's immune system very well might not be able to handle any vaccines for a long time. And, despite what most people are lead to believe, vaccines a lot of time do not perform their intended jobs.

I wish y'all the best.

Orange1086 said...

Hi Aimee and Adam!
I have just landed upon your blog and Kayleigh is such a cute little girl! I, like Kayleigh, was born a preemie weighing in at 1lb 9oz., that dropped quickly to 1lb. 5oz.I went to spend about three months in the NICU before coming home Christmas Eve 1986.So stay strong and if you have questions about growing up as a preemie or something feel free to contact me either via email or through my blog runningtodisney76.blogspot.com because if I don't know the answer, my Mom probably does :0)

The Five Pennies said...

Just checking in on the girl. Love the pic with Mom and crying out loud! So glad to see her so feisty and giving everyone a hard time. Keeping you in my prayers each day.

Becky said...

I just love the pictures of her on her tummy, with her fingers sneaking into her mouth like that. She is adorable! I'm glad to hear she's doing well, and continue to check often.

Becky

Faithfully Yours said...

I will definately be praying for you and your family. I found you guys, because you sent me a friend request on twitter. I accidentally deleted it, but will follow you guys. Good luck and God Bless. I will continue praying for Kayleigh!

--Faith

Pam said...

Kayleigh is really coming along!! I have been following you for a while now, can't remember if I ever commented before or not.

So if I haven't let me introduce myself. My name is Pam and I am mom to Rhett. He is three years old and has been through and had many of the same issues that Kayleigh has had.

He was born at 34 weeks gestation, and was 4 lbs. He was born with a heart defect (AV Canal, Pulmonary Stenosis, VSD, and a PDA) He also has Down Syndrome ~ and Pulmonary Hypertension.

It's so hard when these little ones with PH get sick with any type of lung infections. Rhett had RSV and pnemounia at the same time. It's so super scary.

He has had 6 major surgeries in the three short years that he has been here, including countless hospital stays for other medical issues.

It's so hard to see your little ones go through so much. You see more than any parent should ever have to go through.

As far as the medical mistakes, we know all too well about that as well. Rhett was overdosed on pain medication after a surgery and we nearly lost him. He coded and had to have chest compressions. He aspirated when he was throwing up from the chest compressions, (we had just fed him) and spent a long time on the vent with an aspiration pnemounia. He recieved 10x more pain meds than he should have.

Always be on your toes, and asking questions. Don't let them blow you off about the vaccines.

I hope you guys get to bring her home soon, and we pray that she continues to improve.

Sending lot's of {{HUGS}}

www.theflockofbirds.blogspot.com

Anonymous said...

I wrote to Ellen before and I have did it again, this time I included Tyra. I do hope in my heart that Ellen will pick up Kayleighs story and pass it on. This is just not about Kayleigh, but about being a strong person in yourself. I am a 40yo women and have had many medical issues this last year. I feel my issues are minor compared to what this precious baby has endured and continues to. Kayleigh has truley helped me!!! I hope my final hurdle is Friday with my breast biopsy and that I am cancer free!!! If I am not I will put up the Kayleigh fight against it!!!

Megan said...

So glad I found you precious Kayleigh's page. I too have a son who is 7mos and requires 24hr nursing care. He had a G-Tube inserted at 4weeks old and still gets his feeding through it. He may too need the Nissen someday due to reflux. I will be praying for your daughter and stopping by regularly to see her progress. Thank you for sharing her amazing story with us!
Megan Gilbert
www.caringbridge.org/visit/masongilbert

Tracy said...

Hello. I had found your blog from another blog. We live in Northwest PA so we're on the otherside of the state. I will continue to pray for your little girl. She is such a fighter and I'm sure she will get through anything that gets in her way.
I can definitely suggest a wonderful website called Parent 2 Parent ( www.parent-2-parent.org ) there are so many wonderful families on this website that can help you along the way with precioius Kayleigh.
I hope that is helpful to you.

www.caringbridge.org/visit/margaretreed1

Misti said...

I know how hard it is to deal with discharge dates that keep getting moved...but the pneumonia vaccine and even the RSV vaccine are not guaranteed to keep the illnesses away. In a normal world, when you are mostly healthy, yes, a vaccine will probably keep you from getting pneumonia or RSV. But in preemie world, a vaccine exposing a child to a weakened strain of an illness probably won't work, for a number of reasons. These babies aren't on the top of their game, for one...they may not be strong enough to fight off even a mild case of pneumonia or RSV. Also, if they have lung issues, more than likely they are on some kind of steroid, whether it be inhaled or oral. That will weaken their immune system as well. Don't think that just because she didn't get the vaccine that it kept her from coming home because she got pneumonia. It probably wouldn't have made a difference...
I'm glad you added me a friend on Twitter. I like reading about other preemies and offering comments if I can.
May God bless your family!
James 1:2-5

Julie said...

Hi!

I just thought since you are following me on Twitter, I would drop by your blog. Your precious little girl is AMAZING!! But you already know that!! :) To have made it this far...God is so good!!!

I have put your button on my blog and I will be praying for you every day.

"Now to HIM who is able to do immeasurably more than all we ask or imagine, According to HIS power that is at work within us" Ephesians 3:20 (My favorite verse ever)

Blessings & prayers,
~Julie

zzzzzbaby from bbc said...

I'm glad to see that Kayleigh continues to make progress. I'll keep praying for her and your family that you will all have the strenth to make it through this trying time.

My niece had a G-tube and a tracheostomy when she was younger. She was able to have her tracheostomy closed when she was about three, and the G-tube came out later, but she is now a healthy girl who is graduating from high school this year. It's wonderful that there are these amazing things that can help our little ones survive until they can make it on their own.

I'll pray that Kayleigh's procedures go well.

Keep the faith!

Jenn said...

Praying here for Kayleigh and you both. I know you are upset about the vax, but perhaps there was a reason for that. Praying God's hand over all medical procedures and attendants/doctors, and for strength, growth and thriving!

4 Lettre Words said...

I can't wait until she looks back on this as an adult and says, "You wanted me to get fat?!?"

Blessings sweet girl!!!

Sandy Jenney said...

I have given you a blog award for the wonderful job you do on your blog and helping to spread the word about not only your own daughter and her need for prayers, but other preemies too!
Go to my site to pick it up!

adrianna york said...

I just wanted to say that you all are in my thoughts and prayers. I hope that she starts getting better soon. From Kim and Adrianna

Karen said...

STill busy writing emails and letters to get your family featured on something - this is a little bit of what I've written and I just got a read receipt from your local news from the email I sent them - so at least I know that they are reading my email! More prayers for Kayleigh

There is a family in your local viewing area named Freeman – they have a daughter who was born June 23, 2008 – against all odds, the doctors told them to expect their newborn to be born dead or to die shortly after birth – from the day she was born the baby has astonished the doctors living through major and minor setbacks, currently at just under 6 lbs and just over 6 months old – she is still fighting, still not out of the woods, but fighting every day to live. The father, Adam Freeman has been writing a blog since before she was born, detailing her struggles and the family’s requests for prayers for this baby. The response from their readers, most of whom don’t know the family – is amazing, and there are many many people that claim that reading about this miracle baby has renewed their belief in life and in God – The parents, Adam and Aimee believe that their little girl was brought into this world for some reason, and truly believe that it is to touch others life – which is why I’m writing. Besides being the parents of two older children, and 6 month old Kayleigh – Adam and Aimee are RE-Max realtors and their business has suffered because of their daughter’s health and their need to be with her in the hospital so often. They didn’t ask for anything but many readers of their blog have donated money to the family – and they need a lot more help. I think this is the type of news story that the family’s across your viewing area need to see while they are sitting down to dinner together at night – Something good in this world – the parents are very very well spoken and the father is going to turn Kayleigh’s blog into a book some day – and is very passionate about the fact that his daughter is touching many people around the world who read their blog – and showing the miracles really do happen, and prayers really can be answered.

Please have someone check out this website www.kayleighannefreeman.blogspot.com

And see for yourselves the miracle baby – see her pictures, read her story – and then consider putting them on the news so that Kayleigh can touch even more lives….



PS I don’t know the Freeman’s – we’ve never met – I found their blog by accident while searching for information on delivering a pre-term baby as my daughter living with me was about to delivery my grandson 7 weeks early – and I haven’t missed a day since then reading her blog and catching up on her through her father. Please do yourself a favor and check out this site – you will be amazed from the moment you see her father’s wedding ring around her little wrist on the day that she was born!!!

Anonymous said...

Hi,
I am not even sure that the Freeman's will see this, but I am a nicu nurse over in Canada. I am glad that your daughter is doing better. A trach will honestly make life easier, and will probably get your little girl home faster. Try not to worry about whether or not she will need one, at this point you have to do what is best for her and what will get her home faster. I have looked after many kiddies who have come around pretty quickly after having a trach. Yes, a trach will be more work, but I am telling you, she will get home faster:) Good luck.

KAYLEE said...

AWWW THIS MADE ME CRY :(

Erin said...

Praying for your gorgeous girl! It was a little difficult for me to read because my niece is a NICU graduate & your song is one of my favorites but Kayleigh sure is a tough cookie & WILL BEAT every obstacle. God bless your little miracle girl & I hope everything is resolved at your meeting tomorrow.

PreemieMom2Scott said...

I think it's an amazing idea to get Kayleigh's story heard. I too am trying to get people to hear my story only to spread awareness about Preeclampsia and HELLP syndrome to help raise awareness about how early detection is key to both mother and baby. I am so excited to see how great Kayleigh looks and how happy show looks with her mommy!!!! I truly believe in the power of prayer and I have a favor to ask of you!! If you could possibly have all your prayer warriors pray for my son Scott who has stopped growing in the past two months. He is currently 1 yr old and is only weighing in at 12 lbs. He has gained just over half an ounce in two months and now has to see a geneticist. I am only asking you this because I am deathly afraid and just want everything to be ok fo rmy baby he has been through so much!! Hopefully God can continue to shine down his light on these two sweet angels and help them through these rough times!! Please help me pray for my son Scott Robert Herman

Holly said...

please pray for my son if you would like to hear our story please visit his site at www.scottrobertherman.blogspot.com

Darlene said...

It's my first time at your site today. What a little miracle she is! :)

Darlene (CWO)

Petula said...

Wow! I went back to read about Kayleigh's birth (which is on my oldest daughter's birthday!) and I am amazed and touched by yur little tough cookie. Thank God for her continued improvement. I saw your badge on Jo's website at Life's Perfect Pictures and came right over.

Kayleigh is such a sweet little one. She's amazing. I pray that you all continue to have strength through all of this.

I'm going to put Kayleigh's badge on my site.

BTW: How'd the meeting go with all the medical folks? That was today, right?

Take care!