I don't even know what to say anymore

[kimmydawn]

I watch my daughter struggle with what feels is her very life to nest her little boy, Jonathan.

See, right after she found out that she was pregnant (unexpected surprise because she was on the pill), she also found out that she was sicker than most. She found herself at the ER several times, and tests were run at her first OB appt. They asked the typical questions...one being about the thyroid. We responded that she'd tested borderline hypothyroid as a younger teen but never enough to justify a thyroid hormone. She's also had major problems with her eye, early greying, etc. When she was younger, dr even tested her for early aging disease due to her very early development, eye problems, grey hair, skin issues, etc. When they tested her thyroid, it came back showing (they said) borderline hypothyroid. It was tested a few more times and always showed the same.

Anyhow, back to the present...we explained this and they tested her thyroid. The OB called the very next day and said she was to see an endo and that they'd already set it up. Her tests showed her to be hyperthyroid and would explain alot of the way she was feeling. Cool, we thought. YAYAY she can feel better we thought. We had NO IDEA. :(

We went to the endo and he examined her...head to toe, eyes to fingertips. The first words he said, "Well, you certainly have a goiter...three times larger than the thyroid should be to be exact." He left then came back, left and came back again...checking bloodwork tests that, by this time, had been take three times before that first visit. He sat down and got very close, uncomfortably close. I now see that he wanted us to understand and to have our full attention.

His next sentence was, "Well, Jessica, not only are you hyperthyroid which we knew, you have Grave's Disease. You also have a thyroid goiter three times larger than the thyroid should be. On top of that you have Grave's Opthalmopahty. You never knew this??? This is your first pregnancy??? You're sure???" He then stated that getting this pregnancy to birth would be difficult. We later found out that many miscarriages can occur...up until the 7th month...then premature delivery. He explained the risks to the baby, what daughter was going to have to do, how things might affect her and the baby, etc. He then said that she may have to have surgery while pregnant, but he's only had to do that once so far...he doesn't see that happening.

This was the beginning of a wild, confusing, almost crazy ride...one that we're still on.

Through this all, she's now on her second bout with hepatitis (due to the hyperthyroidism) and now they're concerned for her heart and making sure it hasn't been damaged due to everything but mostly the never-ending sinus tachycardia and another type of sinus arythmia (sp?). She increasingly extremely weak, dizzy, short of breath to just go to the bathroom and pee. Taking a shower leaving her in a lump of tears until she recovers.

They were able to get her counts, liver, almost everything but the heart stuffs stabalized and then out of the blue her heart started really going crazy fast, bad palpitations and skipping with pain and tightness. They tested her again and she more hyperthyroid than her counts have ever shown to date. She's been taking this med...PTU...as directed and it's not even approved for pregnancy. If they can't get her stabalized, she's looking at 1) surgery while she's pregnant or 2) making the decision whether the baby would do better outside or inside the womb. She's only 27 weeks.

She's currently having all kinds of tests and dr's appts...endo, OB, cardio with the ER in between.

The biggest concern would be if little Jonathan shows tachycardia in the womb. If that gets severe enough it could compromise his blood flow and damage. He's not shown that at all. If daughter's antibodies from this auto-immune disease cross the placenta, they baby could be born hyperthyroid, with an enlarged thyroid, need meds, etc. If the PTU crosses the placenta, he could be born hypothyroid, need meds, etc.

My daughter is living a nightmare that she couldn't have thought up in her wildest dreams. She's the strongest person I know...hands down. She doesn't feel it and is clearly traumatized from all this. Please send her thoughts and prayers.

During this time, my oldest found out she was pregnant as well. She excitedly took me to dinner to tell me. Five days later she called me frantic as she found out she was miscarrying. The very next month she was pregnant again. Please send thoughts and prayers that her pregnancy does well for her and her baby.

I needed to let you all know where I'm at. I appreciate any thoughts and prayers that can be sent. It's day to day here, alot of days just maintaining, some getting blown away but trying to count our blessings as well. My boy (my nephew that I've had since just before his second b'day...for about 2 1/2 years now) is a blessing. :)

Much love,

KD

[Lara]

Thankyou for the redirect from Sanctuary. I may have missed your message today otherwise.

What a shocking time your daughters are having. You and your family are in my thoughts, KimmyDawn. Thankyou for the update, I was beginning to become very concerned that there had been another turn for the worse. Keep strong and know that many people even very far away are thinking of the girls, the baby and of you.

:hug:

[moose53]

((((((Kimmy)))))),

http://img.photobucket.com/albums/v90/moose53/MINIS/huggiebears-mini.gif

I don't even know what to say :( Except, that I'll be praying for your two girls and your precious grandbaby boy to come through this time safe and healthy.

I can't even imagine how much your Mother's Heart is aching now.

It sounds like Jessica has a very good doctor now. I pray that The Universe sent her to him because he has the knowledge and the skill to intervene and prevent any more problems.

I'll be praying for ALL your little ones, Kimmy. And you, too, ((((((Kimmy)))))) -- I pray that you'll be able to stay strong and healthy to help your daughters and your grandbaby boy and I pray that you'll witness four miracles.

BIG HUGS (and blessings for all of you) :hug:


Barb http://img.photobucket.com/albums/v90/moose53/MINIS/holding-hands.gif

[rashelle]

Kimmydawn, I understand and will pray for all of you. We love our children so much. I know there isn't anything you wouldn't do for them. Please try to take a little time for yourself.

[shiney sue]

This is a very hard time honey,you are in my prayers as well as your
daughters the whole family. Be strong your so tired when our children
hurt we do to.. Thinking of you :hug: :hug: Sue

[Curious]

:hug:

you know i'm here for you.

:D i'm good at distracting you...so im me when you need a brain vacation.

[Chemar]

:hug: Kimmy

you know my prayers are lifted for you and for daughters, and for the precious lives growing in their wombs

:grouphug:

[MM's Mom]

thinking of you all in prayer

[Shelley]

KD....:hug: .... you are such an awesome mom and I know your daughters must take much comfort in that. I have you in my prayers.

[AfterMyNap]

I'm praying for all of you courageous women.

[CoolAngel26]

:hug: :hug: Praying for you all.

KD..I've been around,just haven't had the time or energy to post lately..After work,I'm so conked out.

Big :hug: :hug: Love,Kristin

[Chemar]

Kimmy
hoping and praying that things have stabilised some for daughter and that you have also been able to get some quality rest :hug:

[kimmydawn]

(((((((((((((( everyone ))))))))))))))))))

Her shortness of breath (and due to that the extreme weakness) is better!

She even went to the movies!!!!

However... :(

When she was hurrying to get dressed, she somehow hurt her back...pain is pretty intense. She said it's not the normal pain that she's had with her herniations.

We'll keep watching and going day to day!

Thank you so much for the prayer and words of support and love!

KD

[Maureen]

Hello KD,
I never post here, always at Parkinson's. Happened to come across your post and wanted you to know that I will keep you and your daughters and grandson in my prayers. As an aside, with all that you are all dealing with, I just want to tell you that I had a baby born at 26 weeks in 1976. He is fine and while it is a difficult ordeal for a parent, particularly if this is your fiirst baby, medicine has come a long way even since then to help these tiny babies.
Kindly, Maureen

[kimmydawn]

Thank you so much! Hearing those things helps my anxiety more than you know!

She's 28 weeks Thurs and I said from the beginning of this if she reaches 28 weeks I'll dance a jig. Well, watch out guys and cover your eyes cause I CAN'T DANCE! ;)

Thanks so much. Each day is an added blessing.

KD

[Dmom3005]

Kimmy Dawn

Sending prayers and hugs.

I too am hear to read and wanted to say that I wanted you to know that I believe you are a strong group of ladies. They take after their strong mom.

And a grandson well he is a fighter I would have to say.

Donna

[Lara]

Just wanted to let you know that you and your family are still in my thoughts.

:hug:

[kimmydawn]

Thank you so much (((((((((( lara )))))))))) You're so kind to me and caring. I appreciate it so much.

My daughter and little JJ are maintaining, but it's been very worrisome for little JJ recently. See, his movements have greatly reduced and heart rate though still normal, went from high 150's to high 130's/low 140's. They're now doing weekly no-stress tests on him. Last week, he failed and they sent daughter to hospital immediately for a special ultrasound where they grade from one to 8. He almost didn't get his 8. They literally had to beat up her belly to get two small gross body movements from him in the allotted time frame. :( She called the dr. and they let her go home. On a good note, he immediately showed her his "practice breathing" which means he could breathe outside right now if delivered.

Anyhow, his movements have still been so low that she just sits and cries on on verge of tears all the time. They'd increased when she refused to take the time released beta blocker, but it didn't last.

Well, three days ago, I just told her to get up and get her heart rate going hard and see if that helped his movements. It did somewhat but not alot. She also noted that he increases a bit when she's in a hot bath and doing all that stuff.

Because of all this, she didn't take her beta blocker yesterday just to see what happened and she sat and giggled all day long. He was moving constantly, up in her ribs, etc. Same thing today. She said, "seriously mom, his movements have increased 80% if not more. i have NO doubt the beta blocker was sedating/affecting him."

I've told her to trust that. She sees dr. Friday for another no-stress test, but I said she should call him sooner to let him know about the beta blocker as one is not supposed to skip doses or discontinue. She's discontinued. The good thing that doesn't worry me is her ultrasound of heart showed a normal heart and the arythmia's are directly related to the hyperthyroidism which is, at the moment, under control. Sooo, while she'll probably get a bit tachycardic, it might be fine.

Anyhow, that's the latest. We're just waiting for our new little man to get here safely we pray.

Thank you for keeping us in your thoughts. We need it and it means so much.

Love,

KD

[Lara]

Gosh. What a complicated situation. I really feel for your daughter.

I hope she's let her doctor know that she's stopped the beta blocker though.
KimmyDawn, you do know that one should never abruptly discontinue a beta blocker? Correction: Yes, just re-read your message... you do know that.

My children developed a lot of problems after they were born, but my two pregnancies were care-free and just a breeze really. It's sad that it's not that way for everyone. I hope that everything runs smoothly in the weeks to come and that both mum and baby are both doing better.

Hope you're getting some rest there. No wonder you're worried. :hug:

[kimmydawn]

Thank you ((((((( lara )))))))

Yes, she sees him tomorrow, but called him today to let him know what's going on. The nurse said he'd call if he had any instructions.

Her echo was fine and they put her on the beta blocker mostly for her comfort and extreme panic/anxiety/exhaustion due to the tachycardia when it was at its worse due to hyperthyroidism. Her theyroid levels are good. Her dr. was too comfortable with the beta blocker anyhow (neither was the endo) due to the pregnancy so they're probably relieved that she's not taking it and tachycardia, though worse, is maintaining with her resting.

Thank you so much! Yes, we had to notify dr due to the warning and he's not called back yet, so it must be OK for her situation (with no heart conditions).

I'll know more tomorrow. :)

KD

[Dmom3005]

Just realized you had posted on this thread again.

I'm sending your daughter good thoughts and hoping things are good
at the doctors today. Hoping she can start to relax after her appointment
and grandma too.

Hoping things go more smoothly, and that this little one comes out to
play soon.

Donna

[kimmydawn]

Thank you so much, Donna.

She had to take a beta blocker today...out of breath and severe tachycardia just trying to take a quick bath in preparation for appt.

She needs to have a hard and difficult talk with dr (which is hard for a 19 yr old to do). Of all days she's taking hubby and not me! LOL.

I'm going to instruct them both.

She needs to ask if she can take when she has to do things like take a shower, etc., if it has to be all or nothing? If it has to be all or nothing, what the heck do they do????

I'll keep you posted. she's very bummed that she had to take one before the no-stress test on him because it will slow him down and she wanted to show him how much more active he is without it. She's so concerned and worried...crying most of the time.

Love,

KD

[Dmom3005]

Hmmm, I know this is going to sound really lame. But I would ask her to
try this for one thing. When she is thinking about the fact that she has
to do all these things like going to the doctor, take a bath, get up and
go get something to eat. Just using her brain.

Tell her that she is also causing some anxiety in her head, but really doesn't
know it. I was doing this too. It was causing me anxiety, and I didn't
realize that.

But when I was getting started with my physical therapy, they had me stop and take some really deep breaths. So now when I start to think about the
fact that I need to do things. I'll sit for a few minutes and take some
deep breaths first. And then I'll think for a few minutes about the things
I need to do. Then I'll take a few more deep breaths. Really deep.

Then I'll get up and start to move around, and I found out also that I need to focus on something in the room to not get dizzy. So I find something close to focus on and take some deep breaths if I'm stressed. And its really weird
how well its working when I'm really stressed out.

My symptoms are much better.

Donna

[kimmydawn]

Thank you so much for sharing, Donna!

Her anxiety and shortness of breath is coming from the tachycaria due to hyperthyroidism, but you're right in that is does get worse when she lets her brain get involved.

She's worked very hard on that and it managing it very well on that end...well, for the most part. Once she reaches the point of no return, it's difficult. I will tell her about the breaths because that's when she can panic. She hasn't had a true panic attack in months, but I foresee one if this continues and it looks like it's going to continue...good lead into saying what dr. said in her appt. (OB).

She took the beta blocker this am (about 2 hours before she went so it was in full force there). Little JJ didn't move at all, though his heart appeared better. OB didn't send her to the hosptital this time because she told him she'd taken it.

When she told him everything that I put here, he agreed. He told her no more and said it's definitely been affecting (probably the combo with the PTU). He said he doesn't think it's harmed him though. One indication of that is when she's not on it, he immediately picks right back up, but NO MORE. He's ordered another no-stress test for Monday and then again on Thursday with her to report any concerns IMMEDIATELY so they're watching him and her closely. Each visit will contain a thorough checkup for her as well.

He said he personally viewed the echo of her heart and her heart couldn't look any better...picture perfect, so she's just going to have to deal with the tachycardia until she can't anymore, or it forces their hands.

She's on bedrest for the rest and will have to make sure she does little. He said to know that her heart is absolutely going to race and she's going to get out of breath just pee'ing, but it's OK. Her tachycardia never did directly affect him, but the beta blockers are. He told her, "Good job, mommy" and she was so proud! *smile*

She was really excited when he said, "We're close Jess. He's already breathing in there and everything...we're not far honey and you're going to feel so much better when that baby's out of you."

I'm still so scared...but maintaining.

Thank you so much for your support.

KD

[Dmom3005]

Sounds like a great visit. Maybe for one thing she needs to do sponge baths most of the time for now.

Then she needs to use a wheelchair instead of walking. YEck on that.

Yes, I know but that might help with the racing part. And then she could
just walk when really necessary.

And sounds like she might start to calm down some knowing she is doing good, and so is he.

Donna

[Chemar]

KD's daughter is in hospital for observation
Please keep her, daughter and the baby in thoughts and prayers
thanks

update is here
http://neurotalk.psychcentral.com/showthread.php?t=24335

[Dmom3005]

Thanks for letting us know. Sending prayers to them all, and especially
strong thoughts to little JJ you can do this, stay strong so you can come out to greet mommy and grandma.

Donna

[Tootsie]

:(I can so sympathise with KD and daughter! I was diagnosed with Hypo Thyroid/Hashimoto's disease just prior to my MS diagnosis. Scary stuff, but not nearly as tough as Graves Disease.

With the Hypo thyroid you don't have the heart racing which I would think is pretty darn scary.

I may not have read through this as carefully as I should have, but isn't there a treatment for Graves disease?

I remember that both President Bush (#1) and his wife Barbara had that problem. They both seem fine.

Is the pregnancy the difference here?

I do hope all turns out well.

[SandyC]

Lifting you and your daughter in prayer Kimmy. I see you haven't posted an update but hope things are fine with everyone.

[Curious]

kimmy has 2 grandsons now!! let me go find the thread.

http://neurotalk.psychcentral.com/thread33839.html

and her daughter had successful surgery.
http://neurotalk.psychcentral.com/thread34884.html

:hug: i know you're busy kimmy...i thought you might not see this.

[befuddled2]

Congrats Kimmydawn, and thank goodness.

befuddled2

[tamiloo]

Hmmm, I know this is going to sound really lame. But I would ask her to
try this for one thing. When she is thinking about the fact that she has
to do all these things like going to the doctor, take a bath, get up and
go get something to eat. Just using her brain.

Tell her that she is also causing some anxiety in her head, but really doesn't
know it. I was doing this too. It was causing me anxiety, and I didn't
realize that.

But when I was getting started with my physical therapy, they had me stop and take some really deep breaths. So now when I start to think about the
fact that I need to do things. I'll sit for a few minutes and take some
deep breaths first. And then I'll think for a few minutes about the things
I need to do. Then I'll take a few more deep breaths. Really deep.

Then I'll get up and start to move around, and I found out also that I need to focus on something in the room to not get dizzy. So I find something close to focus on and take some deep breaths if I'm stressed. And its really weird
how well its working when I'm really stressed out.

My symptoms are much better.

Donna

:hug:Wow Donna you have no idea great you post is...I also care for my 83 year old Mom...God grant me patience...taking the deep breaths will help....

[joellelee2000]

My thoughts and prayers are with you. It's so hard to watch your kids go through so much pain, physical and emotional.

:hug:

[janlici]

Both will be in my thoughts and prayers, KD!

I wanted to tell you that early delivery is difficult, but it's very possible that the baby will do just fine if he needs to come early. My daughter was born at 26 weeks gestation way back in 1979, and while she had some minor problems her most pressing one was just doing her growing outside the womb instead of inside! She's 28 years old now and will have her 2nd little boy in May. :)

Stay strong! :hug:

[greenjeans]

Prayers and hugs

[kimmydawn]

*tears* (yep, I'm an old sap...lol)

thank you soooooooooooooo much ((((((((( everyone here ))))))))))

Yes, the massive fear and difficultes are OVER!

My baby girl just saw her endo day before yesterday and he got all emotional on her, teared up and hugged her. He said, "It's over, Jessica. I've never had such a difficult and complex case and not for so long. Then after a full year of all that, to have the absolute best outcome is amazing. It's over, hon." My daughter hugged him back and said, "Yep. I know you saved my son's life but probably my actual life too." He simply said, "Yes." That acknowledgement was almost too much for me to bear even though everything's great. I just remember his words....IT'S OVER.

Her thyroid has been removed. He said her next pregnancy won't come close to resembling this one and the BC pill will now work on her, etc. He said her heart and liver should have no lasting damage but they'll watch them both. She's to start weaning off the beta-blocker soon now too!

She's so "even" all the time...just my normal turd instead of this out of control, desperately ill (even emtionally due to hyperthyroidism) young woman/girl. She's my hero. She's one of the strongest persons I know and I'm so blessed.

The baby was born four weeks early to the day and it was VERY scary the few weeks up until the delivery and the delivery. HOWEVER, he was/is fine and perfect...nothing touched him through this...not the hyperthyroidism, not any of the drugs, nothing. A miracle is a miracle. God sent this little one against ALL odds (daughter was on pill and hyper w/grave's but we didn't know it) to save my daughter's life. He kept them both through it all. I give God all thanks and praise at these miracles.

My oldest and her baby boy are doing great...picture perfect pregnancy and birth...a blessing.

My two grandboys (the first ever born four months apart) are AMAZING. I'm the happiest woman in the world right now. :) There is nothing sweeter in this world than the love between a woman and her daughter's child. :)

Thank you so much everyone, and curious thank you for posting the links for updates. :)

I was a year I'll never forget and wish I could in some ways, but IT'S OVER!!!! I tell y'all. I would NOT have made it without NT and PC and the escape, love, support, information, and work focus they offer me. :)

Love and thanks,

KD

[Dmom3005]

Its getting harder to be the caregiver that needs the support of others,
while she is searching for the care she needs too.

I had to go to my orthopedist today for my shoulder, I've had so many issues
in 2007. And my Physical therapist thought he would just either do another
test to make sure it really is bursitis or give me a pain shot or send me on
to pain management.

Em he was talking about my medical problems being to much to think about
shoulder surgery. So I got the shot, and physical therapy for more.

Come back in a couple of months, if not better. They would look for more
ideas.

Ugh, I am not in shape for surgery.

Donna

[Dmom3005]

It just makes being a care giver hard when you are trying to care for yourself too.

Donna