12/3/08 - Major Gains or Faulty Scale?

We received the results back from the blood work done on Aimee and they point in the direction of hyperthyroidism and she could possibly have Grave's Disease. We have an appointment tomorrow with the Endocrinologist to do some more tests and hopefully figure out what medications they can put Aimee on to fix this issue. The problem we are facing is that every type of medication is not good for Aimee while she is breast feeding/pumping. We also found out the medication she was on while Aimee was in the hospital just before Kayleigh was born was not good for her either. We even asked the doctor several times to make sure and he said that it would not effect anything that has to do with Kayleigh or her milk. So, needless to say, we are a little anxious going in to this appointment because of the wrongful advice we were given the first time around. No offense to all professionals, but we don't have room for mistakes right now.

Kayleigh is hanging in there. Her crankiness has not gone away and the doctors are doing a couple tests to see what might be the problem. They have noticed Kayleigh coughing a little more than normal lately, so they are going to possibly lower the flow of oxygen she is getting as it may be drying out her throat. There are not tell tale signs, but I made a suggestion to test for RSV to be sure there are no early signs of issues there. It seems her throat is bothering her along with her breathing, so they are keeping an eye on that closely.

Since Kayleigh has been having a hard time keeping her sats up, which in return makes it hard for her to rest, the doctors have decided to increase her Nitric Oxide and bump up the amount of oxygen she is getting. Neither will hurt her, but will certainly make her relax more. She was sleeping most of the time we were there, but showed signs of irritability when she was awake. I noticed her cough and trouble breathing, but hopefully they will figure it out. They don't feel that it is reflux as she is not showing any other symptoms that point in that direction. Unfortunately, they had to resort to the sedation medication to calm her down.

As for her feedings, she is tolerating the fortifier so far. She is getting 35mls and 24 calories per feeding and barely having any aspirate so far. Check this out!!!! Her weight has really jumped from last night. She is up to 4 pounds - 10.78 ounces, but who knows if that is true weight because she was 4lb - 6oz yesterday. I hope and pray that is correct and not a faulty reading from the scale because 4 ounces in one day is AMAZING!!!

Keep praying hard for Kayleigh's growth and for Aimee to have some good news at the doctor tomorrow.

God Bless,

The Freemans :)

22 comments:

Anonymous said...

Grow Kayleigh grow and good luck Amiee. I have graves so I understand what you are going through there.

T and M said...

Well, the thyroid meds are safe for both hyper- and hypo- thyroid diseases it is safe to take (and often increase) these meds durring Bf'ing and pregnancy. ---They are the only drugs that have actually had clinical trials on the babies/mothers.--- (all other drugs have been considered too risky in the ethics department so they don't have trials and CAN'T have the best safety rating for pregnancy, because of the trials, and the passing with flying colors, thyroid disease meds DO HAVE the highest safety rating for pregnancy and breastfeeding - per my neutral pharmasist at Target who took the time to explain all this to me when we were trying to decide if it was safe for my friend to take antibiotics if she was pregnant) They were both found to be safe!
So, if they decide thyroid is the cause, there's a blessing...

Jennifer said...

We will keep praying for both.

Sarah said...

I'm praying that you guys get some answers tomorrow for Aimee. Its tough making a decision on something that is good for you, but not for your baby. How long before results come back for the test the doctor's ran on Kayleigh? Its tough to watch your kid struggle and not be able to do a single thing about it. And WOW! hopefully the scales are right and she did gain that much weight! You guys are at the top of my prayer list...hang in there! I mentioned you guys again at prayer meeting last night too

Joja said...

Food for thought, I started to look up if there was any effect on a pregnany! Seeing as how Kayleigh is not gaining weight or losing it quicky I think u should have them check the baby too!!!!

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.

I wonder if she does indeed have it and its effecting Kayleigh?

Shannon said...

You asked for everyone to pray for growth and overnight a 4 oz increase. Amazing indeed.

mamaduck said...

I can understand how hard it is to try to figure out why a baby is fussing and can not even imagine how much more trying it is for you two. With Kayleigh getting breastmilk though has Aimee tried changing up her diet? With two of mine I've had to cut out all dairy and slowly start back on everything but milk (stayed off that for awhile). Chocolate is another big one. My littlest one wasn't showing signs of reflux but kept coughing in a way that she stopped breathing. After I changed my diet her episodes have pretty much stopped now.

Mel said...

So happy to hear that Kayleigh has gained some weight.
Although I don't want to impose my views on anybody, I just want to express to Aimee it is okay if you have to stop breatfeeding/pumping. She has done an AMAZING job keeping it up for this long under extremely difficult circumstances and sometimes it just has to stop for any number of reasons. I had to stop and it was very hard because I believed breastmilk to be the best, but ultimately the switch went fine and it was the best for all.
I know Kayleigh has tolerated breast milk better in the past, but she is a growing, changing girl.
I guess just don't feel guilty Aimee if you have to stop. You are an amazing Mommy!
Still praying in OK!

Anonymous said...

Usually when a child gains that much weight in one night, it is fluid retention and not actual weight gain. An appropriate amount would be an ounce a night. Just keep this in mind as you may see her lose this "weight" (if the measurement was correct) over the next few days.

bri said...

WE are going to believe that it is a miracle and not faulty scales. God asks us to trust HIM and not lean on our own understanding. I am believing God for your little miracle to come home soon.

Valeri Knight said...

Have they consider her being allergic to something in the breast milk. While in the NICU with the girls, a baby next to us was really really fussy and they could not figure out why. She had several allergies and the mom had to quit eating those things. Everything turned out just fine, the mom just had to watch her diet.

Also happened with several twin moms in my twin group. Might be something small they have overlooked.

Valeri Knight said...

Great weight gain also. The twins would do that, poop one night and loose, then gain a lot the next night.

Keep the faith, she looks great.

Anonymous said...

Grave's Disease can cause extreme weight loss, altered mood and personality, and suicidal tendencies. My uncle had GD, and was treated with medication until he took his own life.

My dad was diagnosed with GD last year and chose to have his thyroid destroyed with a radioactive pill. He was not allowed to be around children for 1 weeks after this treatment. He is doing well now.

The other option is surgical removal, which carries some risk. As scary as it may sound, my dad's doctors said the radioactive option was the best option.

I wish Aimee all the best.

Shannon K. said...

Praying for you guys!

My mom has Graves Disease. She lost a lot of weight and her body started attacking her eyes so they started to bulge. She treated it with medication and monitired herself very closely but went against medical advice and did not have her thyroid taken out and she did not do the radioactive pills. She changed her diet and exercised religiously and miraculously all her levels are now normal. Of course I'm sure this can't be true for everyone but there is hope. I hope all goes well!

I'm a heart warrior! said...

Fingers crossed that Kayleigh doesn't have RSV. It's great that she's gaining weight!

The Porter Family said...

I found your blog a few weeks ago and have been looking for updates & praying ever since. I am believing that the Lord will continue in His faithfulness :)

The Porter Family

Anonymous said...

I'm praying for lots of growth for Kayleigh in the coming days and weeks! The bigger she is the better she can fight off anything!

My prayers are with Aimee too and that she is treated soon and feels better!

Karen
cincymomof4

Jennifer in NM said...

Way to go Mrs. Kayleigh! Wow! You just keep packing on that weight little one.

Just a fast (probably stupid) thought. Aren't adults with hypertension cranky? I know that my father in law never feels "good" he's always in a foul mood. Well could it not be that maybe Kayleigh is showing signs of discomfort caused by her pressures? Or maybe it is just her way of saying "I want my mom and dad. Nobody else touch me." I don't know just throwing around ideas, although they are simple. I do agree with another poster that maybe Kayleigh should be tested for GD as well. You never know it might be the answer!

Aimee I can only imagine what you are going through. I know for years the docs have thought that my thyroid is messed up but can never catch it when it is acting up. So I have been overweight for years now and have so many other sypmtoms of hyperthyroidism it is ridiculous. But they can't treat it if they don't catch it in the act. So for that reason I am hoping that you get news that at least you know what is wrong and they can treat it. I know it is going to be a devastating blow because of Kayleigh but she needs you to be your strong resilient self.

I will continue to pray for all of you.

With much love and prayers,
Jenn

Cristi said...

Oh do I remember those days of counting every gram, and losing and gaining. You are in my prayers. And by the way who wouldnt be cranky with all the prodding and probing done to her. God Bless.

Lindsay Dean said...

Continuing to pray for both of the girls in your life. And praying with you that that scale was correct! Think about you and your family daily.
Heart Hugs and love,
Suzie Dean and family

Anonymous said...

Thought you guys might like this:

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped them with a delivery date and away they would go to the parents who eagerly awaited their arrival. Things usually ran pretty smoothly.
One day, however, down the conveyer belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's uhm...well...different." "Yes, he is unique" said the second angel. "Well I think he is quite special," said the first angel "but I don't think she will quite fit our standard wrapping procedures." And the second angel added, "And we know she's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special she is." "What a wonderful idea!" replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.
When they were done, they stood back and admired their work. "Beautiful!" thay all agreed. "Now for our blessings," said the third angel "for it is time for her to go." "I will bless her with innocence and happiness," said the first angel. "And I will bless her with strength to face the many challenges that lie ahead" said the second angel. "And I will bless her with an inner beauty that will shine on all who look upon her" said the third angel. Before sending her off the third angel, who was very wise, gently tucked a note inside.

And it said:

Dear Parents:

Today you have received a very special gift. It may not be what you were expecting and you may be disappointed, angry and hurt. But please know that she comes with many blessings. And, while there may be pain, she will bring you much joy. She will take you on a very difficult journey but you will meet many wonderful people. She will teach you patience and understanding and make you reach deep inside yourselves to find a source of strength and faith you never knew you had. She will enrich your lives and will touch the hearts of all who meet her. She may be fragile but he has great inner strength.

So please handle her with care. Give her lots of attention and
shower her with hugs and kisses. Love her with all your heart
and she will blossom before your eyes. Her spirit will shine like the brightest star for all to see and you will know that you are truly blessed.

We will continue to pray for Kayleigh and Aimee and your entire family. Things seem to be somewhat looking up for Kayleigh and we can only hope it gets better from here on out. I know it's taking a lot of time, but just remember she needs all the time to heal and recover fully so she can come home with you guys......so frustrating at times, I'm sure. Have a great night and know you all are still in our thoughts and prayers.

Anne
Cheyenne, WY

jaidyn marie said...

ive been following your little angel story since aug.i am a mother of 4 boys and a little girl 15 months jaidyn. we all always check in to see how you guys are all doing, i found your story while i was entering jaidyn in a baby contest on line, and got side tracted by your pic on the same web site. my 5 year old jake, was looking with me yesterday ,when i showed him your little angels scar from her open heart surgery, i explained the doctors had to open up kayleigh's little chest to help her heart be better, he watched the pics and listened to my story, with great interest. after while we went to the kitchen ,jake turned to me and said"im going to hurt those people who hurt that little baby"!! so i had to explain to him again, how the scar on thebaby wasnt to hurt her, but to help her. well all our prayers are with you. may god give you all the strenth you need.and may your little miricle thrive and become a little princess.