12/5/08 - Answers


Here is "Nana," Aimee's Grandma, loving on Kayleigh tonight. She was saying her prayers over Kayleigh and posing for a photo. She is such a shining light to our family and we are forever grateful that she was able to make the trip down here, at 86 years of age, to see Kayleigh and spend time with the rest of the family. She is one amazing person and we love her to death!

Kayleigh is hanging in there. She continues to have agitation, which is no new news. They have started her on a continuous drip of prosticyclin to see if that, on top of the increased oxygen, Viagra and Nitric Oxide, will calm her down. Some one mentioned inhaled prosticyclin before, but the doctors feel that it would work better through her Central IV Line. Her tests have all come back clear and she does not have RSV! Woo hoo!!! She is currently on 40mls and is having no aspirates. Kayleigh was slightly anemic and did get a blood transfusion tonight. Thank goodness she still has that central line in, so they didn't have to upset her with putting in a new IV. Anything could set her off and cause her to spiral out of control at this point. All we can hope for is she makes progress with this new medication.

A lot of you have brought up some really great points and questions, as we have taken these questions to our doctors to get some answers. Here are some of the answered questions:

1) Next Echo? The doctors know that Kayleigh's pressures are up by the way she is acting. They don't need to get another echo at this time unless they feel her pressures may be reacting different than normal. At this time, Kayleigh's pressures are reactive and the medication they are giving her when she goes in to a hypertensive episode is working, so there is no need to measure what the pressures are doing.

2) Acid Reflux? Kayleigh is already taking a motility drug called Reglan and she is taking Prevacid for any possible cause of reflux. They have had her on this for a while, but I just found that out when you all started mentioning reflux. Thanks :)

3) Aimee's Dairy? She hates milk and many other dairy items, so that is not causing Kayleigh to have a good allergy in that department.

4) Post-Partem Thyroiditis? That was a question we had also, but the Endocrinologist and his reasoning, kept diagnosing it as Grave's Disease. They did get some blood work, so if we find anything different out, we will be sure to let everyone know.

5) Kayleigh's Thyroid Issue - She has Hypothyroidism and they currently have her on
Synthroid.

6) Aimee's thyroid issue being passed on to Kayleigh and causing any harm? Research shows that having Hypothyroidism, which is what Aimee had before, brings on preeclampsia and low birth weight. If there were major problems to the brain or any other areas, it would have shown up already. Our neonantologist and the endocrinologist both mentioned that a goiter would have formed in Kayleigh's throat if anything were to be passed through the placenta during pregnancy.

I hope I answered all the questions, but if not, please know that we have taken in consideration everything that we read in the posts because we want to make sure our little Kayleigh is getting attention to every possible detail. Thank you very much for your questions.


Thank you so much Madi and Luke from Las Vegas for sending in your Kayleigh bracelet photos and letter. Kayleigh is going to be so excited to read all these one day! Please keep wearing them and sharing her story so she continues to touch the lives of others. Thank you!


Thank you June! I completely understand you having one of those days where you don't want your photo taken, but to show your support by taking one anyhow shows your true heart :) You have been nothing short of a miracle to our family. We appreciate all of your hard work and we look forward to continuing our partnership and friendship for a long time. You are one of the main reasons Team Freeman has been successful at RE/MAX. Thank you for everything!


Bailey, Thank you so much for taking a photo and making a beautiful sign for Kayleigh. You fit right in there with those princess's on your seat ;) I hear that you say "awww" every time Mommy does, but we certainly said "awww" when we saw your photo. I wish you the best and please keep praying for Kayleigh. She is such a blessing because of your prayers.

I apologize, but we are not posting the next two nights. I want to say it up front before I get a lot of emails or posts, wondering what is going on and where we went. If an update needs to be made, I will get it done though. We are driving "Nana" back to PA and staying for a night to bring home some of the best pizza known to man from the Pottsville Auction, one of the smallest town's, largest attractions :)

God Bless,

The Freemans :)

21 comments:

jag said...

I am so thankful that Kayleigh does not have RSV. As a mother of preemies, I was so worried when I heard that they would be testing Kayleigh for it. Praise God that the test was negative! Glad your Nana was able to visit. I know that was special to all of you.

Pennie said...

So glad to see Nana, (or "Miss Eugenia" as we call her) at Kayleigh's bedside. I know she was thrilled to get to see your little sweetie, and what a pretty picture for you and Kayleigh to treasure!

Hope so much that Kayleigh and Aimee are going to get straightened out soon. I know this takes a toll on your nerves and your health, but keep believing in the powerful work of God.

Have a safe trip to PA. and enjoy all the goodies that only they have!

Love,
Pennie

Mel said...

So thankful for no RSV!!!!
You guys enjoy your drive baack with your Nana. How great it was she could visit!

Anonymous said...

Phew! Glad to hear it's not RSV!

How long ago did she start Reglan? There are some side effects to that med that can cause aggitation. My son could not tolerate it. He would fuss and fuss and was jittery. Just a thought.

Keep up the progress!

Alanya said...

Have a safe trip to stumping grounds, I live in the little town of Lehighton Pa. I hope you enjoy your pizzaand have a safe trip back to beautiful Kayleigh!

Always in my prayers,
Alanya

The Woollard Family said...

We are so thankful that Kayleigh does not have RSV! That in itself is so scary and unfortunately something that every preemie parent will forever be scared of! The montly shots during RSV season are expensive, but worth it. I'm not sure if she is able to get those shots, maybe ask her doctor about those? Bailey Alyse gets those shots once a month from October - May (RSV season). Some insurance companies will cover it, others will not. They are about $1,000 per shot. If you are able to, and decided to, get the RSV shots for Kayleigh, once she is home a nurse will come to your home to administer the shot so you do not have to take her out of the house. I just wanted to pass on that bit of information.

I also wanted to say THANK YOU about saying what you did about the hypothyroidism causing preeclampsia. I have always thought that I had a problem with my thyroid but no doctor has ever done a test on them. However, I did have preeclampsia at 31 weeks when pregnant with Bailey Alyse and had to give birth to her at 33 weeks because of it. So I am going to bring that to my doctors attention to see if they will finally do a test on them so it won't happen again! Again, thank you!!

The picture you posted of my daughter on her is going to be framed and put in her room and her baby book so she will always remember your daughter. Kayleigh is such a fighter and we will continue to pray for her, Aimee, and the rest of your lovely family!

Take care,
Heather, Joseph, & Bailey Alyse Woollard

Carly Nicole Elliotte My Micro Preemie said...

Praise God that Kayleigh is free from RSV!!! And that's great that "Nana" was able to come for a visit. Hope you all have safe travels.
In Christ,
Rachel

Anonymous said...

Hi Aimee & Adam,
I'm sorry to hear your latest news about Grave's disease, but I wanted to share a bit of info that might be helpful. My brother had Grave's Disease and instead of destroying his whole thyroid, they destroyed HALF, curing his Grave's but leaving enough so that he does not require medication. I hope this is an option for you.
Godspeed from Kill Devil Hills

ellie said...

***Prayers for Kayliegh***
Ellie in MS

Anonymous said...

Adam - so glad to hear that the RSV test is clear. I'm not sure if you have been given much informatin previously about milk protein allergies and sensitivities, but even if Aimee isn't drinking milk, eating cheese, yogurt, and ice cream - dairy still shows up in a TON of products... there are many names for it, including whey and casein. Lots of medications also have it, including the Prevacid solutabs. Just more possibilities to consider :) Babycenter.com has some great allergy and reflux boards with lots of very knowledgeable breastfeeding mommas, if you need more info!

Kristin0821 from BBC said...

I'm so glad to hear the RSV came back negative. :) And I hope you have a safe journey to drop your Nana back off. What a blessing for her to be able to meet your little Kayleigh!

I brought up the dairy question the other night and wanted to mention, too, that 50% of babies that have intolerances/allergies to dairy also have issues with soy. Like the previous poster mentioned, dairy is found in many, many things and in many different forms. Same thing applies to soy. I know you have a team of amazing doctors working to figure out why she's unhappy but having three kids that have all had issues with food, I thought it was worth bringing up again.... just on the off chance that there might be something bothering your little one's belly.

Anonymous said...

Great news that the RSV test was negative! What a relief.

Her agitation might be because of the drug Reglan. My son was put on it at 4 months because of Lack of weight gain caused by severe reflux. He was on 36 hours and screamed the entire time. It got so bad he had a very bad muscle spasm which made him stop breathing. After a very stressful ambulance ride and lots of benedryl he was ok.

When I got home I research the drug and I was sick to my stomach because I gave my son that drug. i dont know why the doctor didn't warn me of the side effects.

Here are some links with more info.

http://www.infantrefluxdisease.com/reglan.php

http://www.drgreene.com/21_843.html

http://community.babycenter.com/talk/a1721685/reglan?

I wish you the best of luck in figuring this out.

Anonymous said...

You two are such amazing people!!! Everything that you have gone through, and are going through. God is putting you to the test, but you are staying right up there with Him where you should be!! Awesome!!! You are angels to Kayleigh and you are her heroes. It's truly amazing the days you have. I pray for you....all of you. God will answer your prayers. He always does. May God Bless you always. Stay strong!!
Kathy

Keri said...

Prayers as always for Kayleigh and your family from up here in the frozen north!!

Keri from NH

Anonymous said...

I am new to your site. I am sorry that you are going through these hard times. God truly blessed you with a beautiful baby girl. Have they checked Kayleigh for pulmonary hypertension? I found out 2 yrs ago I have Primary pulmonary hypertension, I too am on rivatio (Aka viagra). It is to open the arteries in the lungs which you may already know. It is hard for them to diagnose because it mimics other conditions. May God continue to bless you and your baby girl.

Angela said...

Hey guys,

I am sorry to hear about how things are going, please let Aimee know that my thoughts & prayers are with her. Just remember to put it in God's hands, trust in Him, & He will pull you through. You two have been through so much, but you also have to look at the unbreakable bond that you now have. Because of this situation you are probably closer than you have ever been. God works in mysterious ways, and we don't always know what he has in store for us, but know that we are all praying for you & little Kayleigh. Tell Aimee I was talking about our trip to New York tonight & the "Babushka" that we bought!! That will surely bring a smile to her face!! Love you guys!!

Angela

Rasha Noor said...

Hi my name is Rasha,
I live in Canada. I was searching for baby photos and then came across Kayleigh's story. I spent about two days continuously reading her story and watching her videos. Her story touched my heart. I shared it with some of my church members. I would like to put her story in the upcomming church magazine, so we can pray for Kayleigh. I'm sure she is a miricle form God and I will keep her in my prayers.

May the Lord bring happiness and joy to your family,

Rasha Noor.

kristyo15 said...

Continuing to pray for your sweet family. I have put y'all (yes, we're from Texas!) on the prayer list at our church. Every Tuesday morning our church staff gathers together and prays over EVERY request from the congregation. God Bless and hope you had a restful weekend.

Cristi said...

Got my bracelets in today! Cant wait to take a picture of me and my preemie granddaughter with our bracelets on and send them to you.

Jennifer in NM said...

Ok, I am losing my mind trying to hold out for an update. I know that because you haven't had to post everything is probably status quo. I am still praying for little Mrs. Kayleigh. I am really hoping that they have started to figure out what is wrong. One extreme positive....NO RSV!!!!! I was beginning to think that maybe she is irritated with the tubes and the central line. I can't imagine having all that hooked up to me for 5 months.

Aimee you are still in my prayers. I know you are going to be fine.

By the way I got my bracelet today! WOOHOO!!!! As soon as I look presentable I will have my hubby take a pic of me and the kids and send it to you guys along with the letter.

Much love and prayers,
Jenn

Anonymous said...

Jenn Im right here with ya, waitin for that update... Its not like Adam to go so long without posting... I hope all is well and they are getting some good family and rest time in...
Ill check back in the morning :o) Hugs to all, and as always Kayleigh will be in my thoughts and prayers,
Rebecca