1/15/09 - Pass Your Test


I must say, sitting in a room with a neonatologist, cardiologist, gastroenterologist, pulmonologist, all of their nurse practitioners, a social worker, discharge nurse, and our primary nurse with all eyes on us is quite a stressful situation. There is a lot of brain power going on that you can feel the temperature in the 10x15 room just heat up every minute that passes. A fear of mine is talking in front of a group, but I guess it was worse when it was a group of VERY intelligent people. Once we got going, it wasn't too bad to speak up.

Overall, the meeting went really well! It started off with our neonantologist going over all the wonderful memories that we have had in the past 206 days. Not to mention, I am still trying to forget the 3 months of hell just prior to ever meeting any of these professionals before Kayleigh was born. After we recapped all of our ups and downs, each specialist went over what they felt was best for Kayleigh's care from here on out so we can ALL be on the same page and tackle each problem one at a time.

Hopefully I am not confusing as I explain the order of events. I have mentioned them previously, but each procedure that is about to happen is going to get Kayleigh better and home as soon as possible. We are still looking at quite a few months in the hospital if everything goes as planned, but with the help from all of you out there who are going to pray over her through each hurdle is going to help make this a successful journey from here on out.

First things first, we need to tackle the airway issues. On Monday, Dr. Parsons who is a renown ear nose and throat specialist is taking Kayleigh down to surgery to do a more in depth bronchoscopy (with a video recorder) to figure out what is going on with Kayleigh and why her airways are closing up after every extubation attempt. After he is through and if he finds something he can fix right then and there, he will. If not, the doctors will put their heads together and either go the route of a tracheotomy to help heal whatever this long term problem is, or find another way to fix it. We are still unknown of the problem, but the renown specialist thinks the problem may be cysts which have formed on the vocal chords, not allowing air to pass through when the vent tube is extubated. We can only pray that this is the problem because the doctor can zap those cysts and fix the problem during his procedure on Monday.

After the airway issue has been taken care of, they are going to tackle the feeding issue. The reflux that is being aspirated in to the lungs are tearing up the lung tissue and for Kayleigh to have a chance to grow out of this pulmonary hypertension issue, she needs to grow back healthy lung tissue. The more aspirates she may have, the more damage those lungs take and the longer it takes to heal (if at all). Some lung tissue may not grow back and could cause long term damage or death as Kayleigh will not be able to supply her growing body with the amount of oxygen it needs when the body outgrows the lungs.

So, in order to fix the aspirate issues, we need to determine if in fact the aspirates are causing most of the lung damage. The Pepcin test we "thought" came back positive for micro aspirates, was not the case and we are still waiting for those results. We were told the results came back positive, but oddly those results were lost and can not be confirmed. There was an apology given and the subject changed before we could ask any more questions. So needless to say, they are doing another test and we should know something soon. If the test comes back positive, then the Nissen surgery and G-tube will be performed. The Nissen surgery is where they tack up the stomach at a vertical angle, which will not allow reflux to occur. The g-tube will feed directly in to Kayleigh's stomach by a tube inserted in to Kayleigh's abdomen.

Right now, Kayleigh is at 3ppm on her Nitric Oxide and is no longer being given her steroids (Hydrocordizone) to reduce inflammation or the Fentanyl which is the second to last of her pain medication. She is still on max dose of Versaed. That leaves her Viagra and her Flolan, which she can come home on both of those. Her feeds are up to 13mls/hr continuously, which are at her max feeds and she is tolerating every bit of it. She has put some weight back on, which she is now right back at 6 pounds. They are no longer administering antibiotics, so any signs of infection/pneumonia are completely gone. She is on the lowest setting possible on the vent, but just seems to have these last hurdles to jump, that is if she doesn't have any setbacks with the upcoming procedures. She is such a strong little girl that we have no doubt she will make it through.

Now, let's talk about CHOP (Children's Hospital of Philadelphia). Okay, that's it! (That was quick). Actually, since we are consulting CHOP on all decisions and Kayleigh is showing a lot of signs of improvement, something is being done correctly and there is no need to uproot our family to get the same treatment up there. Although, if there is something that pops up along the way that CHOP can offer that we do not and that Kayleigh needs, then we will be gone in a heartbeat. Let's pray things don't go in that direction. However, we do have awesome family and several people who offered assistance if we must go. Thank you everyone for being so awesome and making us feel comfortable if we need to head to Philly.

So now this leads to our prayer requests and with all this mess, what do we pray for first??? Well, let's take one step at a time and pray that the bronchoscopy on Monday shows simple signs of a simple problem and can be simply fixed. Then we will decide where to go from there. I will be sure to update you all the rest of the week and weekend on Twitter, which sorry I didn't tweet a lot these past couple days. I promise to get better with that because I know how I would be if I was in your shoes waiting for an update. (Nerve Wrecking Huh?)

Since my last mistake with the "Sir Spamalot" baby photo contest, people advised me to submit a photo to the Regis & Kelly contest going on. I sent in our main photo with the ring around Kayleigh's wrist and hopefully they will allow people to vote soon, but keep an eye out for when they open the voting. I am guessing that is how it will work, but one way or another, we shouldn't get bombarded with unwanted spam mail this time. I am glad I cancelled that quick! Also, if you missed my tweet, I finally got the bracelets boxed up and ready to send out. I will be sending them tomorrow morning after I take the kiddos to school. Thank you for your patience on that, but I am excited for everyone who gets to show them off and share Kayleigh's story with others.

That leads me to end my post tonight with a piece of advice. Day in and day out, our faith is being tested and day in and day out, we pass! No matter how hard our battle is our how bad we want to blow up on the first person who aggravates us, we remember who is testing us and why He's testing us.

We were not given this battle with Kayleigh because we are being punished or because we we did something bad in our past, it is because we are strong and we can handle it. It is because God wants you to see that no matter how bad our situation is, we can endure the pain and turn it into something good for the sake of you learning from it only to make a difference in your own life.

We are being tested far beyond what most people see on the surface, but we are handling every detail with the sole purpose of glorifying God. You all don't see those details, but Aimee, myself and God do, and how we react to those smaller details is how we can pass each test. There is no doubt that we have and we will continue to pass each test given to us! First, because we are competitive and we don't like to lose, but because we love every single one of you who have been following Kayleigh's journey with us and we want nothing more than for you to trust in God through your own trials. He is not punishing any of us, but He is only testing how we react. Do something good with something bad! Pass your test!

God Bless,

The Freemans :)

66 comments:

jag said...

Excellent advice. And, thanks for the prayer direction. It helps to know what Kayleigh's goal is specifically.

Jaci said...

Thanks for that! I will be praying for you guys on Monday! I hope everything goes as planned! She is just too cute

Shari said...

You wrote "it's because we are strong and we can handle it." Where do you get your strength? Not from yourself, but from the Lord himself and He needs to be glorified for that. And it's OK to admit defeat if you are having a bad day and things just aren't going right. And believe me, you won't ever pass every single test in your lifetime. We all fail.

Kate's Mommy said...

glad everyone is on the same page, glad to hear progress is being made!!! continually praying...

Jelly Belly said...

Praise God for your faithfulness and strength. I am so thankful to have found your family and to see what an amazing, enduring faith you have.

I will most definitely be praying for your precious girl on Monday, and everyday. God bless you!!

Cara said...

Good luck to Kayleigh for her next procedure! Will the G tube be a Jtube like before?

Just an FYI, you spelled the type of doctors wrong..it is actually a NEONATOLOGIST, and a GASTROENTEROLOGIST.

Lockhart Family, Calgary said...

Glad to hear the pow-wow went well, we will pray each step of the way...I love seeing her playing with a toy and smiling...What a big girl she is now...Stay strong...
♥Desiree

Sarah said...

I haven't left a comment in a while but I'm still here and still praying. There are two ladies that I pray with on Wednesday night and they both call and ask for updates a couple times a week since they don't have internet. You guys are such a blessing to me and a constant reminder that I shouldn't cut God short...

Kim Smith said...

Hello sweet Freeman's!! Just want you to know you are always in our thoughts and prayers. We will pray specifically for Kayleigh's upcoming procedures. The Lord has His hand on your family. I think Kayleigh gets cuter and cuter with each picture you all share! Evan might want her phone number in like 20 years....haha!
Love,
Nate, Kim and Evan Smith
www.caringbridge.org/visit/evannsmith

Kristin0821 from BBC said...

I'm glad to hear that your team meeting went well. It's good to have all voices in the same room at the same time.

I thing I may have mentioned this before in regards to Kayleigh's reflux, but reflux can be caused by food allergies. Reflux caused by food allergies can not always be helped by relux meds. My youngest had absolutely no improvement with zantac or prevacid - regardless of the dose. Her reflux only improved when we put her on EleCare (NeoCate). It's an amino-acid based formula - specifically for babies with severe food allergies, malabsorption issues, along with a host of other things. I'm no doctor, though. Just thought it was worth mentioning.

I will say many prayers over the next few days that Kayeigh's procedure on Monday provides some answers and that the doctor is able to address it during the procedure!

Blessings,
Kristin0821 from BBC

Emily said...

You guys all continue to be in my prayers. My daughter had a gastrostomy/nissen and also a tracheostomy for long term ventilation due to pulmonary hypertension and Cor Pulmonale. I know how scary all of those choices can be and would not wish them on any family. God is truly good though, as you know. His plan isn't always obvious but looking back it's amazing to see how things fall into place. Praying for great news on Monday!

Jon and Tiffany said...

I love the latest picture of Kayleigh, what a doll!!! I will def. be specific in our prayers these next couple of weeks as Kayleigh is getting ready for her surgerys. She is AMAZING!!!! I love your ending advice!!! Again, what a witness you and your family are. It is so important for people to know that God is not punishing us. Have a wonderful weekend with Kayleigh and your family!!!

Love,
The Michaels

Tyna said...

I just read through all of your blogs and I would just like to give you praise for continuing to stand strong in your faith. Alot of people are willing to place blame on God when things get difficult, rather than to attempt to see the meaning behind what he has done. He has truly sent you a little blessing in a small package of a daughter. What a fighter she is as well. Best of wishes and prayers go out to you and your family. Stay strong!

Jennifer said...

Praying!

The Carpenters said...

I am so blessed that I happened upon your blog. Kayleigh's story alone has pushed me to grow closer with God. And you know? It's funny you mentioned why you and Kayleigh have been dealt the cards you've been dealt. I was struggling with that pretty hard two days ago when I first found your story. I didn't understand why a God I have never doubted gave this little beautiful life such a battle to fight. But every time I look in Kayleigh's eyes in your photos, I am reminded how much God loves her (and me) and how much faith He has in her. I get tears in my eyes every time I think of your strong little trooper. She has changed my life. Thank you for sharing her with us.

Anonymous said...

Adam and Aimee,
I love the picture of Kayleigh with a toy in her hand! It reminds me of the fact that she is just a "regular" baby. (Not sure if that makes sense???) I am glad the meeting went well. As always she will be in my prayers!
God Bless you all.
With love from Southern NH

Melissa said...

Praise God for all the wisdom you have around you and Kayleigh! And thank YOU for the piece of advice.

I woke up thinking about your update this morning because I didn't get to see it before going to bed last night. And when I woke, I was also convicted that I've not been praying as feverishly as I had been for Kayleigh. I realize this morning that I've prayed HARD through the tough spots, but neglected to "pass my test" and CONTINUE to pray without ceasing for her in her good times. For that, I apologize to YOU! But I also hope and pray that every other follower of Kayleigh's story hasn't done the same thing I've done!!! I hope that we ALL continue to pray to God during the rough spots AND through the easy days of life--Kayleigh's and our own! If nothing else, THANK HIM for His goodness during the good days!

I feel obedient in writing that, because it was laid on my heart this morning. I'm hoping that, just as I've read your blog and been both encouraged and challenged in my walk with God, that maybe someone else who has done what I've done may also stand up and pray more fervently. :)

Still praying in Bama...

Deni said...

So glad the meeting went well! Sometimes you just need to all be on the same page. I was curious, whatever came of the issue with Kayleigh's shots and her not getting them when she should have, was that addressed at all?

MissJeovette said...

You are very right!!! God did not give you this battle because you were bad but bc you handle it. That's what I used to say when both my twins girls were at the NICU. I have strong faith Kayleigh will pull through every procedure smoothly. My church and I are praying for your family and especially sweet Kayleigh!!! Kisses and hugs to sweet Kayleigh. Let her know her friends from Brooklyn are praying for her everyday!!

xoxo,

The Abreu Family

Anonymous said...

Praying in MN!!

Anonymous said...

Often when we go through trials, people will say that God won't give us more than we can handle......I believe He does... because He wants us to rely on Him. On our own, we are weak, but with Him, we are Strong!
Prayers continue for you all as your faith grows and Kayleigh grows!

Mandy said...

Praying for your Kayleigh! I check in everyday to see updates!

Britni said...

This is my favorite picture of Kayleigh yet! She looks beautiful, can't wait to see her without all those tubes!

Jennifer said...

I'm so glad to hear all the good news. I love what you say at the end about not being punished. I started reading a book yesterday I am sure you have heard of called When Bad Things Happen to Good People. What you said about God not punishing you is exactly how the book starts. With what I am going through personally I am struggling with blaming myself. Your faith in Gos has inspired me to repair my relationship with Him as well. The two of you are so strong and is inspriring. Kayleigh is the luckiest little girl in the world!!

The Pirsein Family said...

I just read up on your story of your beautiful daughter. You guys have a lot of faith which is getting you both through this difficult time. All you can do is stay strong and keep praying. I will keep your family in my thoughts and prayers! You have a very beautiful baby girl.

Amber said...

What a great post Adam. I think we all need to hear that God does not punish us but gives us obstacles to learn to let Him guide us and to trust in Him with all our hearts. Kayleigh is such a precious little angel and her story as well as your families story is so inspirational. Your trust and faith in the Lord has never ceased to amaze me and has helped me rekindle my relationship with God. Kayleigh will continue to grow strong and I believe with all my heart that she will get through these procedures and come home. Kayleigh shines in God's light each day because she has endured many things but still continues to be a miracle through God's mercy and love. I continue to pray for Kayleigh each day and thank God for all his blessings he has created for each and every one of us. Kayleigh is truly a blessing and through her story has done so much for mankind. Her story also has glorified God in return by sharing the story of God's healing power through commitment, faith, and prayer. I am so thankful that all the doctors and you as Kayleigh's advocates were there to get on the same page in order to head in the right direction in healing Kayleigh and getting her home where she belongs.

God bless you guys,
Amber Hoberg from Texas

Penny said...

We are all praying here. You have suh a special little girl and you are correct God will carry you through if you allow Him to. I am praying hard for Mondays procedure and a bit of weight in the mean time for your sweetheart.

Thanks for the update, I know you must be exhausted but we do long to know how she is doing.
even though we only know you from blogworld!

Penny

Jen said...

She's so beautiful! You have such courage and are an inspiration for sure. We will be praying that Monday goes well!

Erica said...

I've been following your blog for awhile, but never posted. You have been in our families thoughts each day as you go along your journey. We lost our little girl in March of 2008- she was born too soon and there was nothing they could do.

I pray for your continued strength as you face each day.

4 Lettre Words said...

What a blessing that the meeting went well!

The next 3 days will be spent praying for a "simple" Monday. On our knees, now...

hollylorec said...

It's great too hear that everyone is on the same page now. Its also good to see Kayleigh holding a toy. I'm praying to GOD that he keep's Kayleigh comfortable on Monday and that if for any reason he does find something he can fix it and we will be praying to help her through it she is strong its going to go great. Mom and dad its going to be hard on monday you will think the time is going slow but she will come back and make you smile. I will be with this little girl and pull her through all her hard roads so she can go home. You will have her home in no time.

God bless the freeman's and help Kayleigh get all she need's done for surgury's and anything else so she can go home with the family you and all of us have helped her this far we can do the rest as well.

amen

from the lorec's

Erin said...

I don't know what happened to my earlier post, but wanted to say Kayleigh looks so adorable, healthy and alert...I love her holding the ring...just shows you how far she has come. I'm sure she will conquer her upcoming hurdles, as will the Freeman family, b/c she is so strong. I feel so positive about her future to be in her own big girl room. Give her plenty of xoxo's. God Bless and keep the chins up.
The Polleys

Julie said...

Kayleigh is looking so good and alert. Even if she does end up with a trach, just think of how cute she will be with no tubes or tape on her little face! Hope everyone has a nice, quiet and uneventful weekend.

Jo said...

I just wanted to let you know that I am praying for Kayliegh and for you! God is good and He made Kayliegh so beautiful! I have posted about you on my site and am going to post a link on our new collaborative site that will go up on the 23rd. Kayliegh will have so many prayer going up for her that God will listen and grant you the desires of your heart!

God Bless,
Jo

mrsrubly said...

wooooohooooooo~kayleigh this is awesome news...praying first things first. tiny baby steps....baby steps. sounds like your meeting went great! you all r on the same page and everyone great! yes pass the test~~put in good when the bad shows his uguly self! your right..i am facing some stressful situations and need to remind myself.

Anonymous said...

God Bless You, Aimee, Kayleigh and all of your family! I have been following Kayleigh since Babycenter...early on, and I must say that this post in particular speaks to me. It may be that I am more connected to your words as my cousin, who is a wonderful, loving Christian woman, has just lost her first child at just over 3 months pregnant. It is more likely that God wants me to understand the magnatude of his power and grace. Either way, I want to thank you for your post, your faith and your strength to share both with us.

Jenifer said...

my prey our with yall

kproia said...

I have not been the same since I learned of Kayleigh and your unbelievable journey before, during and after her birth. I feel as though she is a part of my own family and I have been thinking about her (as well as your entire family) since I laid eyes on this website! I will continue to pray that the rest of this road is uphill for all of you!

With love from Natick, MA
Kristen

Anonymous said...

Part of my own questions for God is "why do bad things happen to good people?" Your explainations of passing the test makes sense on many levels. Kayleigh has helped me to answer some questions, although, I must admit, it is still a struggle to understand...I keep trying, and praying...now more than ever thanks to Miss Kayleigh...who, I might add, looks cuter every time I see her! Will be praying extra hard for Monday to go well! Love, Leslie from CT

Shazza911 said...

How nice to have all the experts in the room and getting things sorted out so everyone is on the same page. Kayleigh is such a little miracle and this experience, although not what anyone would want to go through, has obviously given you so much. The education and knowledge that you now have will go so far to helping others as well. Thank you so much for sharing your story. Keeping you in our prayers...

Grace said...

I'm relatively new to blogging and your blog in particular. I will catch up soon... Prayers for you all, for sweet Kayleigh and the whole medical community. I absolutely loved your advice... it is spot on!

As the World "Kerns" said...

I just found out about your story yesterday and we are praying for your family and little Kayleigh. Our Neal was born premature on Feb. 5, 2008. We have been very blessed that for the most part he is healthy and strong. Angels are in the NICU and my heart goes out to all of you. Neal was 1 lb 15 oz and 13.5 inches when born, I remember how difficult the ten weeks were for us, but also all the wonderful people that helped us along the way and still do. We will be praying for Kayleigh. May the Lord continue to give you strength and healing. I pray that you will have the glorious day of bringing your beautiful baby girl home. I still have health issues from the pregnancy, but I'd never change any of it now, Neal is so special. Kayleigh is as well, a strong little spirit and soul!

maureen said...

You are teaching me to trust God again. Thank you Kayleigh.

Audrey said...

Kayleigh, you are such a strong litle girl and you have wonderful parents! Please know that you have friends in Campbellsville Kentucky that are praying for you and your precious family everyday. I am so glad I found your blog and had the opportunity to meet you! Sometimes it's hard to understand God's plans, but God is so good and as long as you believe He will never forsake you! God Bless you precious baby!

Jill said...

My thoughts and prayers for your family and your little one.

momof4miracles said...

I have been reading about your little miracle for a few months now and I just have to tell you that you are blessed. My daughter Emma had a trach for 21 months (she got the trach and feeding tube when she was 15 days old) and just got it out about 3 months ago, she still has her gtube. It has been really hard seeing her go through all of her hospital stays and everything but she has changed my life. She smiles through it all and is so amazing! Your little girl is lucky to have such good parents and we are lucky to have our little miracles. Hope all continues to go well, Emma and I are praying for you!

KAREN said...

What a sweet little girl with such a wonderful family. I hope all the best for you in the days ahead.... GOD IS SOOO GOOD!

Anonymous said...

It is so great to hear that when things get bad we pray and things get better through prayer. God never hand us what we can not handle! We are still praying for everything to get better for Kayleigh and the rest of your family! God bless!!

Friends up in IL

Anonymous said...

It is so wonderful to see God's hand in work through Kayleigh! She is truly a miracle and I believe that God will bring her through all....we will continue to pray and believe Him for a complete miracle! I pray that God will continue to strengthen her parents who have been faithful throughout all this.

Praying for you and your family in New Braunfels, Texas

Carol Ann said...

Ya'll Kayleigh looks so sweet in this pic! She looks like she's getting bigger! She is precious. I know ya'll have to be hurting for her. Your strength continues to amaze us. Hope you guys are having a peaceful night. We're thinking of ya'll.
Love The Nadeaus

Patti Goodwin said...

Your story really makes my faith stronger. God has touched me through lil' Kaleigh. I will pray for her every day. I love you. Your sister in Christ.

Kristie said...

Still praying for sweet Kayleigh several times a day and nite. PLease pray for this baby boy, he has pulmonary hypertension as well.

Here is their blog link:
http://www.jennasjourneyblog.blogspot.com/

Thankyou, I know these prayer warriors can do it. Thankyou.

Give Kayleigh a kiss~~

Kristie

Kate's Mommy said...

Hi! if you can send out a twitter on this family...they have a newborn dealing with pulm hypertension. blessings!

http://jennasjourneyblog.blogspot.com/

Anonymous said...

Way to go Kayleigh! Your such a strong little girl. We are praying for you and your family with your upcoming procedures. Stay strong little one.

Laurie in SD

Sara said...

I have been following your blog for quite some time now. Thank you for the specifics of what is going on right now - it sounds like the meeting was very informative.

God bless.You all are in my prayers.

Kristie said...

Many thanks~~

Kristie

Anonymous said...

WOW!!!! does she look great or what!!!! I really love this pic of sweet lil Kayleigh who would have ever thought a month ago or so she would be holding on to a toy. Its so wonderful to see her jumping those hurdles. YOU GO GIRL!!!!!! my prayers are with each and every one of you guys
Melissa,
Floyd VA

The Plis family said...

Big hugs! We continue sending our prayers. We are even fasting right now and spending special time praying each day. We will add Kayleigh and your whole family to that special prayer time as you continue to go through this journey!

Heather Marie said...

Prayers still be said from St. Pete! :)

Misty Rice-Baniewicz said...

Hi there one of your readers just sent me an email about you wanting a makeover to your blog. I am not a professional, but I have really gotten into custom designing blogs for several people including the reader of yours that sent me an email.

I would LOVE to and be honored to give it a whirl and make you a new look to your blog. If you get a professional willing to I understand, but didn't see any offers on the table yet. I have done several blogs, including one today. let me know if you are interested in letting me give a go.

Praying deeply for your sweet angel. God Bless.

Hope said...

I wouldn't be surprised if they do the bronch and find malacia in her larynx, trachea, or brochomalacia. My baby has these in her larynx and trachea, and they've thought of traching her on more than one occasion. Reflux and feeding issues are associated with the "malacias".

((hugs!!))

Anonymous said...

I have a 9 month old 25 weeker and have been following your story since June or so. Your desire to glorify God in the midsts of all of this is beautiful. It's something a lot of people won't understand but natural to a lover of Christ.
God bless all of you!
Sonia
Las Vegas NV.

Petula said...

I am so glad to hear the update and the plan. I pray that everything went well today (you did mean today for the first procedure, right?). I love the photo on today's post because I love to see that she's strong enough to hold her toy. Praying that everything goes smoothly. God bless.

giraffegirl524 said...

i'll keep praying for you!

Robyn said...

I showed my girls Kayleigh's pictures and we are praying for her. God bless you all!

Meg said...

Continuing to pray for the medical professionals taking care of this sweet girl, as well as her and all of you...
Meg