8/26/08 - Chance of Blindness?

Today was a very emotional day for Aimee and I. We went up to visit with Kayleigh in the early afternoon and had a wonderful visit. We were able to hold her for quite some time and she only had a few brady's or desats all day. I can tell she is so much more comfortable than the past couple days.

After watching the video yesterday about the ROP surgery that is going to take place tomorrow, we felt more comfortable about what is going to take place. No one wants their child to have to go through surgery, but I felt very confident in this procedure as they have been doing it for a very long time and it is very common amongst preemies.

As we were about to head out for the night, the doctor on call came in to talk with us about Kayleigh's unique case of ROP. He mentioned that it was quite weird that Kayleigh went from a stage 1 to a stage 3 in only a week. When dealing with ROP, there are 3 zones that can be effected and zone 1 is the worse sector as it can cause complete blindness or central vision blindness. He told us Kayleigh's issue was in this zone 1 and whether they do the surgery or not, she is very likely to go blind. Our hearts dropped and tears filled up our eyes. He kept going and told us that he has never seen a rapid progression like this and he was truly heartfelt for our situation. He was dumbfounded on how she has been doing so well in all other areas, that her eyes would be the one thing that failed her. The doctor told us that even with the surgery to try and repair the problem, the retina is like saran wrap that could and would most likely detach from the eye very easily. We have a high risk chance of this happening, but if we don't do the surgery, there is an even higher risk of her going blind. It is a lose/lose situation for us.

We were at a loss of words. We left the NICU tonight in such a shocked state of mind that all we could think about was how we would raise this child who would be blind. We thought of all the things you would never think about unless you were in this situation. If you really sit down and think about it, it will blow your mind on how much a person will miss out without their eye sight. We thought about how she would not ever see the ocean and fireworks, some of our favorite things to do. We would have to be with her 100% of the time and learn to trust others who will be as attentive. Aimee and I sat down for dinner and what really hit home hard was that today and tomorrow before her surgery could be the last time she would ever see us.

So as the evening went on, we were suppose to get a call from the doctor who would be performing the surgery and we would be able to ask more questions. One thing we were anxious to hear was this doctors statistics. She called us around 8:30 and we spoke to her for about a half an hour. She told us all about the procedure and then we started to ask her several questions. First off, we were quickly shocked to hear that she qualified Kayleigh to be more in the Zone 2, not Zone 1 and that her Stage 3 was considered Mild, not Major. This was starting to get a little frustrating to me since we were told earlier that it was mostly in Zone 1 and a Major case. So we kept on asking questions and the doctor told us she has been doing this surgery for 17 years and she has only had 5 individual eyes go blind and four of them were on two children. Besides going blind, there are possibilities of cataracts or hemorrhages in the eye, but she has only had a few cases of these too in the 17 years in the field. WHEEEEWWW! Can someone please tell me what God is trying to teach us here? It must be patience, because right now I am lacking a lot of it.

So tomorrow at 2:30, Kayleigh will be going through surgery. The surgery will take around 4 hours total and she will be immediately put back on the vent and she may start feeds back as soon as 6 hours later. We will not find out for 6 weeks if the surgery was successful because they need to continuously check up on the blood vessels to make sure they are growing past the scar tissued area that was broken apart by the laser. There is a 75% chance she will need glasses by age 6, but we knew she would need them anyways because Aimee and I both have them. So all in all, this professional has made us feel much more comfortable that Kayleigh will not lose her eyesight.

Even though the other doctor was not correct in his diagnosis and we got the worst case scenario, I am almost thankful that it happened. I could throw a hissy fit and call him everything under the sun or confront him about it and make a scene, but I would not be honoring God for the way we should act. I am actually glad it happened because I learned how much we take the smallest things for granted, such as our eyes and what we see. I kept telling Aimee tonight that yes, Kayleigh may never see beautiful things, but she will not see ugly things either. She won't judge things on their exterior beauty or see people different and laugh because they have a disability. She won't be visually exposed to murder or pornography and all the other things that are ruining the minds of our children. What I do know, no matter if she is blind or has perfect vision, by our parenting she will bear the fruit of the spirit, which is love, peace, patience, kindness, goodness, faithfulness, gentleness and self control only because our God is an awesome God. Amen!

Please pray for Kayleigh and the Opthamologist that this surgery will be a success.

God Bless,

The Freemans :)

27 comments:

kristin0821 said...

I continue to follow Kayleigh's story daily - starting from Aimee's time on BBC months ago. I send prayers up each day for your beautiful little girl. I pray that her surgery goes well and that she will see you just as clearly tomorrow as she did today.

May God continue to hold all of you.

Kristin

Anonymous said...

Hi

I wanted to send Gods Blessings your way. I was reading about her vision and I wanted to share something with you.

My son was not a preemie. But he has Down syndrome. We too were told to terminate. But we are Pro Life and accepted whatever god in store for us. We were told we were doomed to a life time with a severely disabled child.

Now let my tell you Bryan is 3.5 and has the cognitive function of a 3 year old. He knows a 150 signs and has 65 words, he walks, and he never stops talking. He has some vision and hearing issues but is doing very well with them and despite what the Doctors have said he can see and hear fine. He is anything but severely disabled.

This brings me to my post. First Doctors can tell you the worst and best case scenario. But he can not tell you your little girls potential, he can not take away your hope, and can not tell you how much your love and support will enable her education with support and love. Doctor always under estimate the potential in children. They limits are boundless as I have found out.

I am not saying not to listen and be unrealistic I am just saying that they really don't know. God must have a special purpose for her in this life. Since he is here and was not supposed to be.

So keep your faith as hard as I know it is. Just another FYI. My oldest was blind in one eye and I was told he would never drive. Well he is almost 10 and although his vision is not great it is much better then Doctors ever said it would be and he will drive.

Much love, peace and blessings

Robin Roach
Mommy to Danny, Kevin & Bryan

GiGi said...

Remember that weather the 1st doctor or the second doctor's opinion was more the norm for what usually happens, Little Miss Kayleigh was not suppose to even be here, and through your love and prayer she is here and growing stronger every day. If anyone will defy the odds it is Little Miss Kayleigh.
God Please Bless the Freeman Family and steady the surgeon’s hands to do your will and allow Miss Kayleigh to see all the beautiful world you created for us. Hold them tight and help them to have some calm so they may do your will AMEN.

Denise Northern said...

Gosh, all these things are running through my head, but I truly have no idea what to say. My heart breaks for you, yet, I feel like God has brought Kayleigh this far, I feel like he will take her further.

I just want to be there with you and hug you and sit with you and talk to you. I can't even imagine how scary things must be for you.

Just know that we are here for you and praying for you and that we love you! If you need anything...you let us know.

Hang in there and keep the faith...God is good and he never gives you more than you can handle and he will not let you go, he has you in his hands!

shannnah said...

Hi, I just wanted to say I feel your worry! my son was full term but he has a retina disorder that is like ROP but is called PFVS and it effected both his eyes and has had surgery on both...we thought he would be blind but he sees about a foot in front of him and we just ordered his first glasses (he is 7 months old)we aren't sure if they will help I pray they do... It is very hard to think your baby may be blind! I agree we take our eyes for granted...I pray that the surgery will save Kayleigh's sight!! nobody should have to go through life without seeing...my prayers are with you all! sorry so long...

Anthony's Mommy said...

Uggg doctors! When we were at UCLA medical center for Anthony's PDA surgery (he was sent there just for this surgery) one of the nurses told us Anthony was going into kidney failure!!!!! Of course I knew that meant death! My grandma had died of kidney failure! After hours and hours of fear, FINALLY one of the other nurses came by and mentioned that his diaper looked quiet full! Well the cathedar that they had put on Anthony after his surgery had come out and his we peeing in his diaper and OMG it was full!!! I wanted to scream at this nurse for scaring us so much, but at the same time I was just so thankful that Anthony was okay!

I will be thinking of Kayleigh tomorrow with her surgery and I know, just like everything, she will make it through all this with flying colors.

Kim

campbell9023 said...

Aimee and Adam,

I have to say that I have tears in my eyes right now. I am soooo sorry that you guys have to go through this. My heart breaks for you right now. I pray that the focus of the surgery is in Zone 2 and that they do not have to touch Zone 1 very much if at all. I pray that it is minor and not major.

My eyes have tears in them more for the outlook that you guys have about the situation. I know that the world deposits ugly things into our childrens mind and IF by some chance she does lose her sight, she will be able to develop her minds eye. She will be able to see things in the true beauty that they are, unhindered by the media and such.

Kayleigh,

I pray that you will be able to see how beautiful your world is tomorrow after your surgery and always. I pray that you will be able to see what beautfiful, awesome parents you have and that you will be able to see your scrapbook and your blog in the years to come. You stay strong.

I have grown to feel like a part of your guy's lives. I have followed since I first found Aimees posting on BBC. I check everyday for updates, and go into anxiety attacks like I did today because I didn't see a posting as soon as I usually do. Best of luck tomorrow. I will continue to follow religiously.

**On a side note, I can kind of slightly feel what you guys are going through. For some awful reason, when I was pregnant with Caleb, I had this uneasy scary feeling that he would be born deaf. So when he was born I just wanted to hear him cry because I had always heard that most deaf babies don't cry.**

UGH! I commendeered the posting again. Sorry

Jennifer
jlcampbell2008@yahoo.com

Nikki Conway said...

I have just happened on to your blog a couple of days ago. I just got totally caught up on it today and I have to say I feel attached to little Kayleigh. Someone had posted your blog on my parenting page from parentingweekly.com. I to just had a baby in June. I have to tell you my heart hurts with worry for Kayleigh tonight. I am praying that everything goes smooth and as easy as possible for your lil princess tomorrow. I know god will be watching over her. I can't wait to find out how things went. With Love, The Conways

Anonymous said...

Aimee and Adam,

I work with children that have many disabilities and premies that need a little extra help. I want to let you know that in my prayers tonight that I will pray that Kayliegh does not lose any of her vision but I want to let you know that god forbid that she did that she would not have an empty life at all. THe things that she did not see would be felt in her heart. The way that we feel god but do not see him. I know that you know what I mean here. Please remember this that while there are disabilities in children they can still experiecne and that the worse case senerio that you have been given with her little eyes, is just another hurtle for this little angel you have and she is alwful tough!!! And I was thinking that for some reason you are suffering and waiting and trying everything for this baby and wonder what the lesson is and Adam I think that we will never really now why god does what he does or why the challenges arise but I can tell you that your story touches hearts all over the world and for that I think god must have a purpose. See Kayleigh is loved so much in this world by so many....You will never know! I think that this is gods work at his finest. I will check in with you tommorrow and pray for all of you tonight......

Crystal in Ct

Amber said...

I will definatly be sending out extra prayers tomorrow for Kayleigh. I hope all goes well with her eye surgery. She is a fighter and has well exceeded everyones expectations, just like she will do tomorrow. Good luck tomorrow Kayleigh, I will be thinking about you!

Babyksmom05@yahoo.com

Danielle said...

You said it all, Our God is an Awesome God. He will take care of Kayleigh, I have Faith in that. I love how you are pointing out the positive side in all of this. Not only is Kayleigh changing lives but so are her parents. How lucky we are that God has led us in your direction. Everyone is in my prayers. With Love.

Anonymous said...

First and foremost, God has helped you till date and she will help you going ahead in life.

You asked what is the divine trying to teach you and Aimee? As a third person, I pictirize it as a bond inbetween you and Aimee that will always remian through thick and thin of life, never to seperate from each other due to petty conflicts because life is precious. Live each moment with happiness and togtherness.

Praying to God that she may help Kayleigh in her battle.

Your well wisher

Anonymous said...

Adam and Aimee,

I have never commented before, but have been praying for your little girl and your family for a while now. Just had to comment....

My older son (12) was born deaf...profoundly so. We did not find out until he was 8 months old as he had no other "issues" that would cause us concern, and this was before universal hearing screenings were performed. Doctor's told us he should learn sign language as he would never talk, and we should consider sending him away (at age THREE, can you imagine) to a deaf school to live, where everyone would be able to communicate with him. Talk about dreams shattered....no music in his life? No church hymns? He won't ever hear my voice? Say "Mommy"? Fast forward to now.....we gave him really good hearing aids and worked very hard, and just this last year he got a cochlear implant. Bottom line, he talks, he loves music, he lives at home with us (like that was ever NOT an option), he loves Jesus....and he is just who GOD intended him to be. Doctors are good, but they are NOT God and they don't have all the answers. Only He does. And even if the worst case does happen and Kayleigh loses her vision, she will still be fine. My cousin lost his sight at the tender age of 2 (he is almost 30 now) and he is one of the most special people I know...he has independence with his seeing eye dogs, he is married, has a career, and is as independent as they come. And he is HAPPY....pretty much all the time. Hopefully these tidbits help...just don't want you to lose hope...Kayleigh will be fine either way and when all else fails, remember that worrying is a sin :) TRUST HIM IN ALL THINGS!!!! I know it's easier said than done...but all the time I spent worrying about Dylan....oh, what wasted energy! We will be praying for her during her surgery!

Sherri in North Carolina

Anonymous said...

Adam and Aimee,
I am praying for your entire family as I write this post. I believe that God will guide the surgeons hands today and that Kayleigh WILL be able to see after the surgery. I believe that once they have the chance to really see her tiny eyes, they will find that the correction won't be nearly as bad. We couldn't see God's answers to prayers without some medical assistance, but sometimes doctors put the fear factor in everything. They don't realize that God is the great physician and he can work miracles. You are impacting so many people through your faithfulness to God and are witnessing to people who do not have a belief in God and a daily walk with Jesus.
God bless you all.

Joseph said...

I will be praying for you all, for beautiful Kayleigh, and the entire medical team today. Your faith and humor remain inspirational. Stay strong, and remember to take care of yourselves and each other in all of the craziness.
Meg
chlgrl on Babycenter

Chase said...

I happen to think blind babies make the BEST babies *wink, wink*. Ask Chase, you don't miss that which you never had.

If she ends up with some vision loss, you'll be amazed at how well they can still do EVERYTHING except see.

There are so many services available, it's amazing.

Sorry I haven't written lately, we had the big first B-day this past weekend and are also gearing up for our first year of homeschooling with Alex...BUSY!

We read your message every day and continue praying and wishing for the best for all of you! XOXO

Candace said...

Adam and Aimee,

This is my favorite poem and it's important to not forget this....

Footprints in the Sand


One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints,other times there were one set of footprints.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints.

So I said to the Lord,"You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there have only been one set of footprints in the sand. Why, when I needed you most, you have not been there for me?"

The Lord replied, "The times when you have seen only one set of footprints in the sand, is when I carried you."

Remember that always the Lord never leaves you alone. I will continue to pray for Kayleigh and your family.

Candace

Danielle said...

This is my first time to comment but I have been following your journey since the beginning with Kayleigh. I have prayed for healing, peace, nad comfort for your family. There are times when we question what God's intentions are for your family and he will reveal them in time. Know that he is with you EVERY step of this journey. He will never leave your side. I know there are times when you feel like he is a million miles away but he is sitting right next to you and has Kayleigh cradled in his hands. She is HIS child and has entrusted the two of you to care for her. I will be praying for Kayleigh today as she undergoes her surgery and for comfort for the rest of the family. You are loved by many and prayed for by LOTS.

In Christ,
Danielle
Keller, Texas

Jojo said...

I too have been following your story from the begining. I had my third and last child a girl in Feb 08. I have two boys and now a girl. My Second son who is about to turn 4 in September had his first eye dr apt this past friday and it was shock to learn that he has reitinal scarring on both eyes, there is also a problem with his preferal vision and the pressure in one eye, they also said he is nearsighted and has a sitgmatism in both eyes. He goes to a specialist to check him out and also will be put to sleep to take pictures of his eyes to determine where it came from. He was born 3 weeks early and was put on oxygen at birth. We are unsure if that is cause or not. I read that with reitinal scarring and nearsightedness there is a chance of reitinal detachment which if untreated causes blindness. It breaks my heart to think of the possibility of blindness in a child. I pray for your sweet Kayleigh every day and look forward to your posts!

This is a verse from a song I love from T.I No Matter What

Like a change in direction, even when you ain't planned it
All you can do it handle it, worst thing you can do is panic
Use it to your advantage, avoid insanity matters
To conquer, every obstacle, make impossible possible
Even when winning illogical, losing is still far from optional.

Anonymous said...

I check on Kayleigh every day. My prayers are with all of you that the surgery is a success and she is able to retain her site (however limited). Know that regardless she knows who her mommy and daddy are and the comfort that you bring her. You have such strength and an incredibly beautiful tenacious little girl. Remember the footprints in the sand and realize that God is carrying you all on this path, trust in his strength. Much love always.

-Beth (Houston)

Anonymous said...

Sometimes the challenges seem so overwhelming. I can remember several times feeling like I'd lost control of the plan to care for Jacob. The doctor's worst case scenarios are horrible. But someone commented earlier that God has a plan for them and the doctors don't factor in how much we love them. That will make all the difference in the world as far as their progress is concerned! Hang in there! Lots of Love and Prayers!

Aunt Kathy

Jessica said...

Special prayers to Kayleigh, all medical staff involved and of course to you and Aimee.

Kelly said...

Kayleigh has pulled through everything that the doctors were sure that she wouldn't. God's hand is truly upon her and your entire family. Just know that my prayers for you all never cease and that Kayleigh is always in my thoughts.

Love
Kelly

Erica said...

Kayleigh is a fighter!!! She was not supposed to be here but she is!! God has blessed you both as parents, her brother and sister, family, and us strangers with her amazing life!! I am not giving up! She has gone way to far and she will amaze all of us again! Just a bump in the road she is going to go over with good results!! God Bless You Kayleigh!! He will take good care of you and help you through this bump in the road!! God Bless You Aimee and Adam!! Kayleigh I pray today that God will help you to come out of this surgery with healthy results!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Carly Nicole Elliotte My Micro Preemie said...

I just now got a chance to read your blog. I usually get to read it every night before I go to bed. I'm sure by now she has had her ROP surgery. I pray that she has come through with no complications. I know this is a difficult situation to have to go through. I continue to pray peace and comfort over you and Ammie. I hope you don't have to many hills left in your journey through the NICU.

In Christ,
Rachel

Angela McManus said...

As always, you are in our prayers! We love you guys and wish the best for Kayleigh. No matter what happens, Kayleigh has been blessed with two wonderful parents, and I don't think that God could have put Kayleigh in more capable hands than yours. You are truly special people, and I know that God will never give you more than you can handle. He obviously has a lot of confidence in you both!! Talk to you soon....Angela

campbell9023 said...

Kayleigh,

I just wanted to check in with you before I have to head off to work. By now you should be through with your surgery and on well on your way to a fast recovery. I pray that God's hands did wonderful work today and that you don't lose your vision.

Adam and Aimee,

I counted the minutes through the day until I was almost sure that Kayleigh was in surgery, and through her surgery until I thought that it would be over. I pray that you guys got through this tough day as easily as can be expected. I pray that it went well and the the doc that did the surgery was right about the ROP being in Zone 2. I will look for an update tonight, and if you guys didn't have a chance to post then I will keep my ritual of checking until I see an update! :)

God bless,
Jennifer
jlcampbell2008@yahoo.com