12/4/08 - Grave's Disease + Another Episode = Very Rough Day

Trying to calm Kayleigh down in her swing :)

The results are in! Aimee has Grave's Disease and right now there is some medication she is going to take, that happens to NOT effect the breast milk that she is pumping for Kayleigh. At some point, Aimee and I will decide a time that is best for her to undergo the radiation iodine treatment, which will put Aimee out for a week of contact with any children because she will be radioactive (sounds crazy). It will also be a time to decide when it is right because we are not to get pregnant for 6 months after the treatment. The treatment is a pill and it practically shuts down/destroys the thyroid gland, which will then label Aimee as Hypothyroid and she will have to take medication for the rest of her life called Synthroid. The good news is, the eye enlargement issue should have taken place already if it were to happen. It may develop slowly over time, but since Aimee is not a smoker, it is not as common. Hopefully not because Aimee has this eye-phobia which would be just a sick joke for her to get some of the symptoms this disease can cause. So the good news is, it isn't a heart problem and we can all breath a sigh of relief. The bad news is, it is just one more thing on our plate to stress about and Aimee isn't happy about the guaranteed weight gain from the medication she will be taking.

Kayleigh on the other hand had quite an interesting evening, but one that we are not happy to see. I just called up there to check on her before we go to bed (1:50am) and Kayleigh had another episode. She got really worked up and was showing increased signs of agitation, so they decided to give her some medication (Ativan) to calm her down and it normally works. But, it didn't this time around and they increased her flow to 6 liters and her oxygen to 100% and she still wasn't coming down. They decided to give her some other medication (Phenobarb) on top of that and it finally knocked her out and helped her relax again. She just gets so worked up and her pulmonary pressures cause her lungs to clamp down, which in return makes it really hard to bring her sats back to normal. That is why we are so afraid of the pressure becoming "fixed" where nothing will bring those pressure down, or her running in to an infection that is so bad, her sats won't come down whether or not her pressures are "fixed" or "reactive." It is a sticky situation to be in and all we can do is pray that she doesn't run in to either of these situations.

On top of the two very large stools she had, the nurse pulled a lot of yellowish-white secretions from her throat which seemed to help calm her down too. She mentioned something to me about RSV and of course we already had them do tests for that this afternoon to see if that may be an issue. On a down note, the doctor said that if it is RSV, Kayleigh is in big trouble. He has never said "big trouble" to us before and he said it with high doubts that her pulmonary hypertension would allow Kayleigh to survive such an infection. Please God let it not be RSV!!!!

Since all the drama happened, she is currently on 6 liters still, but at 60% oxygen and it is keeping her sats in the 90's. We should get all the results back from the lab work, blood gas and RSV tests tomorrow. Please pray that this will all pass over and Kayleigh will get on the right road to recovery.

On a good note, the weight that was taken last night was true. Maybe it was fluid retention, but after her two large poops, she weighed in tonight at 4 pounds - 11.4 ounces. Woo hoo!!! Some good news for once!!! Let's keep it coming and hope for a better day tomorrow.

Thanks,

God Bless,

The Freemans :)

31 comments:

Gina said...

We will keep you all in our prayers tonight.

Nelson Family said...

I wonder if they should maybe check Kayleigh's thyroid levels.. maybe you guys already thought of that, but considering what Aimee has going on right now.. it is possible it may have contributed to many things during pregnancy. just a thought.
As always I will continue to pray that the answers are found and that Kayleigh recovers and gets stronger and that your family continues to have faith and strength.
-Karen
25weeker
idaho

jag said...

I'm so sorry you guys have had such a rough time (well, rougher than usual). Praying Aimee AND Kayleigh are on the mend.

Stephanie said...

Wow. I was reading about Graves tonight and ran across a condition called Post-Partum Thyroiditis. I wonder how the doctor can tell the difference between PPT and Graves because I could not find the answer online. I'm curious because PPT resolves on its own in most cases. You definitely don't want to be treated for Graves if there is even a remote possibility that this could resolve on its own.

Kayleigh, it's time to get better. You are too cute to stay in that hospital.

Prayers from Moyock

Keri said...

Dear little Kayleigh:
We are wishing and hoping you let us know what is wrong soon little one so that we may get back on the road to recovery. You deserve to go home...your Mommy & Daddy and siblings love you so much!! So, work hard to get better, we all know you can!!

Keri, Rural NH

Sarah said...

You are all in my prayers as usual! I'm praying super hard that Aimee can keep pumping and put off having to stop for as long as possible and still feel good and that Kayleigh does NOT have RSV!

Anonymous said...

Like I said before DId u ask ur dr about this since she indeed has graves disease its a logical answer.

Pregnant women who have uncontrolled Grave's disease can pass the disorder on to their unborn children. The condition can also cause miscarriage, stillbirth, or premature birth.

Unfortunately, Graves' disease can be vertically transmitted from mother to fetus, and approximately 1 to 5 percent of infants born to women with the disease are hyperthyroid. This is because IgG autoantibodies produced by the mother can cross the placental barrier and target the TSHR-expressing thyrocytes of the infant. Hyperthyroidism in fetuses is associated with poor growth and a high heart rate. Hyperthyroid neonates can be treated with plasmapheresis, or replacing the plasma containing antibodies with normal plasma.

Anonymous said...

I am sorry you all are dealing with such hard times right now! I wish I had an answer for you, boy that would be nice.
Just a thought, I know in the past you have talked to the doctor about reflux and it doesn't seem like something she has. I wonder if they would be willing to try some previcid just to see, rule it out for sure. I know in myself and in my youngest daughter there were no outward signs of it and yet it is bad! I feel like I am having a heart attack sometimes, it is terrible. My daughter when she was a baby didn't spit up like other babies but yet was very fussy, stiff, and "archy". The previcid was like a miracle drug for her as well! She was like a whole new baby within a day.
I know you have so many people suggesting things and are probably sick of getting them all but I just wanted to mention it.
I hope both the girls start to feel better soon.
With love from Southern NH

mamaduck said...

Aimee you don't have to gain weight! I have Grave's and Hashimoto's (don't ask, just know I'm a medical mystery). Most of the time it is hypothyroidism with my TSH in the 100-300 range. I'm underweight and the doctors actually ignored my test results because they said my weight didn't match up. I have many friends that are the same way.

Mel said...

Sorry to hear of more distressing news in Aimee's dx. I am just going to say it: You guys have been thru enough!
Will continue to pray for you both and Miss Kayleigh angel baby.
Dear Lord,
Please be with this sweet sweet child and lift these burdens from her body. Please be with her strong Mommy and restore her to health. Thank you Lord for the weight gain in Kayleigh and for the love and strength you have given her parents. In Jesus's name-Amen.

I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. - Ephesians 3:16
M from OK

Kristine said...

Thoughts and prayers coming to you from NH, I wish nothing but the best for you all. I read your story everyday, and my heart breaks that such a nice family has to experience such stressful situations. You have lots of people out here pulling for you!

Take Care,
Kristine

Rissa said...

Will be praying for both Aimee & Kayleigh... Hope to hear both are doing well soon!! God bless!

Carol Ann said...

As always, we are thinking of and praying for your beautiful family today.
The Nadeaus

bri said...

Praying for your sweet girl today and asking God to comfort you all in this time of uncertainty! Please don't lose hope!

Anonymous said...

I would get a second option before the radiation pills. I had this after the birth of my first child and the specialist I went to said it could be caused by the trama of giving birth. We watched it for a year and it went away on its own. It has been 9 years and I never had a problem since nor did I have a problem when I gave birth to my youngest 3 kids.

Carly Nicole Elliotte My Micro Preemie said...

So sorry to hear the news. You guys are still in my daily prayers and thoughts. May God give you ALL the strength and courage to keep going strong!
In Christ,
Rachel

Jennifer said...

I'm so sorry that you have more on your plate to deal with. Praying that with this news you can at least develop a plan and that all this turns around soon.

aimee gillespie said...

Sending lots more prayers from Michigan. Praying for healing and strength for your entire family.

Aimee Gillespie

Kristin0821 from BBC said...

Praying for all of you during this rough time.

Have you noticed any correlation between Kayleigh's fussy periods and when she eats? My oldest had undiagnosed reflux (she was a silent refluxer - never spit up) and would cry 10-12 hours a day. We put her on Zantac and she was immediately better. My other two daughters needed Prevacid. If the acid is coming back up, it might just be sitting in the back of her throat burning. Are you able to hold her upright for at least 20 minutes after eating?

Also, has Aimee cut any dairy or soy out of her diet? If she hasn't, it might be worth a shot. Just to see if there's any improvement. I had to eliminate both of them with all three of my girls as it just made them irritable. Dairy takes about two weeks to completely work through the system, so there might not be an immediate change but it could help a little bit.

I know you weren't necessarily looking for suggestions, but I thought I would mention these two things. It's so hard when you have an unhappy baby and you can't figure out why.

Blessings,
Kristin0821 from BBC

stacy said...

My hubby had exactly what Aimee has and was treated with the iodine radiation pill. He had this done about 10 years ago and while he has to take a pill everyday to regulate his hypothyroidism, it is 10 million times better than what he went through with the symptoms of hyperthyroidism.

In comparison to what else is going on, now that you know what is wrong with Aimee, it really is a snap to take care of :).

Blessings and best wishes!
Stacy

Jennifer in NM said...

My heart broke this morning when I read the post. I really wish that the docs could just find out what is going on with little Miss Kayleigh. God please give the docs a guiding light to pinpoint what is bugging her.

Aimee, I am glad in one sense to see that the docs have pinpointed your issue, but upset that it is something that will probably take you away from the kids for a week or so. Not to mention the whole no pregnancy thing for 6 months. Gosh you guys are between a rock and a hard place.

Has the cardiologist done another echo? If they did how did that come back?

I will pray ever so hard for the tests to come back negative for RSV.

With much love and prayers,
Jenn

Anonymous said...

I am so happy to hear that there is an answer to all of Aimee's symptoms and medication that will take care of her. What a relief that there are no signs of heart problems! So sorry to hear that Kayleigh is having such a hard time. She is a little fighter so she will fight through this... I continue to pray for Kayleigh. hang in there

Katie
Baltimore, MD

Sarah Oliver (Rochester, NY) said...

Hi! I am the mom to a 24 weeker born 1 lb 7oz on Sept 9th 2008. We are still in the NICU too. I read Kayleigh's story everynight. She is so precious and inspiring. MY daughter, Adrianna, has had a rough road too having severe BPD, meningitis, a pda ligation, seizures, ROP, staph orius infection, reflux, RDS, hydrocephalus (she is having surgery for a vp shunt put on monday), she will also need a trach because she has been on a ventilator for 13 weeks. We have never heard her cry or given her a bottle.
Kayleigh and Aimee are in my prayers!!!!!

Anonymous said...

I had thyroid issues about 5 months after my delivery and was diagnosed with postpartum thyroiditis. It did take some time but resolved on its own with no interventions. I hope this will happen for Aimee as well. I would ask the Endocrinologist what the difference is between the two. Prayers for your family.

the passionate "peach" said...

Lord, we agree for your healing power to touch both Kayleigh and Aimee, in Jesus Name, and for complete wholeness and health to spring forth speedily.

I also had a micro-preemie and about 5 months after his birth I developed and post-partum thyroid problem also. Had several heart tests and took medication for a few months, but it eventually resolved on its own also. There are natural things to help some thyroid issues. I pray for guidance and healing for you quickly.

Trish said...

The American Thyroid Association has some interesting info and advice about Grave's disease & Pregnancy, since Aimee probably had hyperthyroidism during her pregnancy, which may have impacted Kayleigh's outcome.

http://www.thyroid.org/patients/brochures/Thyroid_Dis_Pregnancy_broch.pdf

Wishing you all the best of luck! -Tricia

Jen said...

Adam, Aimee, Kayleigh...I'm praying for you often and I'm praying for you right now.

Jackie Pobiega said...

Hey Aimee. Glad to hear you got a diagnosis. My mother-in-law had Graves and had the thyroidectomy. A word of advice from her for your treatment, avoid the generic Synthroids. Take the real stuff, it works better. Now we are glad you will be feeling better, and Kayleigh just needs to get better too. Good luck.

Anonymous said...

My Dad had the same thing and took the same treatment, and ever since he's been 100% fine....just to give you a positive outlook on the future.....best of luck.

Anonymous said...

Freemans,
I came across your blog today and was reading your story and came to this post about graves disease. I had hyperthyroidism about 4 months after my son was born and same symptoms as you Aimee. They put me on meds and I was told the options to "take care" of my thyroid. I chose to be on the meds for 18 months and then weaned off of them. I have been off of them for 4 years now and every lab test every year is normal for my thyroid. I know every situation is different but I DID NOT want to be on meds for the rest of my life. I am just careful about not exercising too extreme and eating fairly healthy. I am right where I should be with weight, etc so I'm extremely happy to say that so far so good on not having my thyroid zapped.
fyi... I am NOT opposed to medical treatment. I just wanted to try other options first.
Good luck Aimee.
I fell in love with your beautiful little girl when I read her story. Hoping and praying for you all.

Lisa said...

In one point in their life, 75% will deal with a form of Grave's Disease. It is imperative to spread the awareness and extend the medical research of this disease. As I read through your website, I noticed that your organization shares the same passion for awareness within Grave's Disease, that we do here, at Disease.com. Disease.com is a website which is dedicated to the preventions and treatments for all diseases. In order to spread the awareness of this disease, we ask if you could please list us as a resource or host our social book mark button; it would be much appreciated. We can not allow 3 out of 4 women to suffer, so lets spread the awareness. If you want more information on that please email me back with the subject line as your URL