A Wild 24 Hours!!!

WOW, Where do we begin? The past 24 hours have been really crazy. I will first start off and give you an update on Kayleigh. As you all know, we have been having a wild back and forth journey with the feeding issues. We have now spent three months trying several different avenues and none of them worked. I know we were hoping to go straight back to breast milk, but the dye from the Upper GI test and her remaining stools haven't been able to pass through her system, even with the help of several suppositories (Glycerin shaves).

The next step is not to wait any longer for her to poop, but to take a look inside and see what the problem is. Since the Doctor/Surgeon didn't find anything suspicious on the x-ray, he is hesitant to do the surgery. He is currently doing a lot of research on Kayleigh's file and x-rays to see if he can figure it out without cutting her open. If he can't figure it out, we are more than likely going to surgery this Friday. If they open her up and find a problem, they will fix it right then and there. What he is looking for is a narrowing in the intestines that is causing the backup. If there is, he will remove that section and attach the ends again. Let's pray this is a success because if he can't attach the ends properly, she may have to have colostomy bag for a while. I should know something by tomorrow whether or not the doctor has decided to go through with the procedure.

Okay, the craziness is not nearly over. This is even more intense than the possible surgery. We got a call from our main OB-GYN doctor. (Angel Dr. is who we call her). She was the doctor who was on call the night Kayleigh was born, the one who kept Aimee in the hospital for further monitoring and the one who administered the Betamethazone (steroid) shots at the precise time to help Kayleigh's chances of survival. She said she spoke to the Maternal Fetal Medicine doctor who was actually the very first doctor we saw when Kayleigh was starting to grow behind at 18 weeks of the pregnancy. This doctor felt that Kayleigh was not going to make it to a viable state and pretty much told us we should not do anything different in our lives, as it was inevitable that she would not live. To this day, she still thought Kayleigh shouldn't have survived that pregnancy. Well, because of that, she decided to do some research to figure out how it was possible with all the signs pointing in the wrong direction and to give us an answer to everyone's questioning.

Before I get started, it amazes me to know how lucky we were and it quickly teaches me a lesson in judging people too quickly. Aimee and I decided to get a better answer from another MFM doctor because this doctor was quick to tell us Kayleigh would not make it. I will be honest and say that I judged this doctor in a way that I completely feel bad about now given the circumstances. Would you ever want someone telling you your child will die and you can't do anything about it? Probably not, but no one wants to just throw in the towel when someone tells you the odds are not in your favor. We just wanted hope, but now that Iwe see things from her perspective, we would have agreed with her thought process. I deeply apologize for judging as the Lord really frowns upon that and He actually taught me a lesson and showed me why.

Now let me explain why I have a much greater respect for this doctor. While I expected this doctor to just throw her hands up and say this is unexplainable, she did an awesome job to help find the reasoning behind this unexplainable outcome. She just might have figured out the reasoning behind Kayleigh's growth restrictions, Kayleigh's unexplainable Pericardial Effusion, the AFP's false positive, Aimee's spotting, Aimee's major weight loss during pregnancy, Aimee's cysts all over her ovaries, the really thick placenta, Aimee's pre-eclampsia, and all the other unexplained reason's why Kayleigh survived. She came up with a possible solution which is called a Molar Pregnancy. The link will explain more in detail as I am no doctor, but also a disease linked to Molar Pregnancy is Gestational Trophoblastic Disease.

Please read both before moving on as it will better explain the rest of this post.

The scary and crazy thing about both are:

1) Out of all the cases of Molar Pregnancy, there have been two cases in the world where the baby was born. The rest died during the pregnancy and this is a common result of misscarriage. We could not find information about the other baby, but one of them passed after 67 days. Kayleigh would be the only case of survival if the results from the placenta prove true, but we also hope this doesn't cause any issues that would cause her to die. If you look at all the signs, you will notice that Aimee had every single matching symptom. It may also explain some of the issues Kayleigh is having with her digestive problem, since the Molar Pregnancy is based around the chromosomes, but doesn't show up as a chromosome abnormality. (Which the AFP, Amnio and recent Tests showed no abnormalities)

2) Aimee now needs to be watched very carefully for the Gestational Trophoblastic Disease (GTD). We did take a pregnancy test to show that her HCG levels are low because the test came back negative. The unexplained weight gain and the spotting she's been having are signs of GTD though. If her HCG levels are not high now, we need to make sure they don't get high over the next year or so if we decide to have another child. If Aimee happens to get pregnant, the trigger of her HCG levels will cause the aggressive, possibly malignant cancer tumors to spread rapidly. The cancer can be taken care of, but we would need to catch it quickly. The even scarier part is that Kayleigh was born three months ago and we haven't had any follow up to make sure their are no cancerous cells spreading. I read a story of a young girl who died from it because it spread too much before she found out any problems. So let's hope our home test was accurate enough and we don't have to worry about it. We are going to get a test from the OB-GYN to double check and make sure the HCG levels are not high. If they are, then Aimee will need to go through some type of chemotherapy depending on the severity of the cancer cells.

Now this is not a definite diagnosis, but after doing my own research, it is scary to say that everything related to it is matching up to be this exact thing. Again, the good news is our home pregnancy test showed negative, so that makes me feel better. But I won't relax until we know for sure from further tests.

Please pray for my girls. We had a major freak out last night while doing all our research and we will continue to freak out until we get some results. You can go on to google and look up both diagnosis to learn more about it. I picked one of each that explains it well, but a lot of other links tell more about it. The doctor said it could take a few weeks for the placenta results to come back telling us whether or not Kayleigh has overcome the impossible.

Your support and prayers are needed more than ever before.

God Bless,

The Freemans :)


Anonymous said...

Aimee and Adam -

I continue to keep you in my prayers and check every night for an update on Kayleigh.

Should you find out that this was indeed a molar pregnancy, I wanted to share this story. Although the outcome was different, I have a friend that had a molar pregnancy and, while she did end up with Gestational Trophoblastic Disease, she underwent chemotherapy and has since had two beautiful children. As far as I know, there are no lasting results from her molar pregnancy.

Kayleigh is truly a miracle. Keep faith in that.

Aimee - I will keep you in my prayers and hope that your HCG levels are normal. I'm assuming that you're still pumping? Breastfeeding requires fat stores. So, even if you're careful about what you're eating, your body will hold onto those fat stores to allow your body to produce milk. Just wanted to make mention of that. No one warned me about that when I was breastfeeding my first! :)

God Bless and thank you for keeping this updated. I pray for you all daily.

Kristin0821 from bbc

Jennifer in NM said...

Aimee and Adam,

I read through the two links you provided and much of it sounded positive. I have a knack for looking at the information and making heads or tails of it. I mean, the GTD is usually benign and it is usually 100% curable, so that is a positive. The fact that Kayleigh has lived past the 67 day mark is also a positive. She is extremely strong and I hope and pray that she does not come back with some sort of chromosmal problems.

I know that it would be unspeakably devastating for you guys to lose her, but all of us bloggers would lose a piece of ourselves as well. Aimee did an awesome job while she was pregnant in thought that the doctors could be wrong. So my thought process is is that she did so much for her outside the ordinary, Kayleigh will pull through.

Now I am going to be a nervous wreck until you guys hear something else.

I will pray extra hard for you guys.


Anonymous said...

God Bless You Aimee and Kayleigh with health & strenth!!! God is good!!

You all are amazing people!! God Bless you all!!!!!!

Mommy to 2 boys
1 who was a 31 weeker

Anonymous said...

After all that you've already been through, it is devastating to hear that there is a few new bumps in the road! But you've made it this far already, and I'm sure that God has a plan - it's just hard (well, really hard) to see right now!

You are all in my prayers, and keep your trust and faith in Him - remember that even when it gets rough, His eye is on the sparrow.

God bless,


Anonymous said...

Aimee :

I always wanted to let you know that the nutrisystem program wasnt right for you or Kayleigh but feared that I may hurt your sentiments.

These kinds of diet include certain herbal or non herbal chemicals which basically manipulate your body to absorb nutrition from foods. Which would most definitely make u thin but then would get passed on to Kayleigh also thorugh your breats milk. Which you dont want for the both of you!

Please go on a healthy low fat home made food diet.

I shall always pray for al of you.

Very emotional after reading your blog today:((

Wishing you a colorful rainbow at the end of your dark tunnel.

Your well wisher

Anonymous said...

WOW what a crazy last 24 hrs...that's nuts....all of it. Just give that girl a hug and kiss and tell her how amazing she is from all of us. So a ? for you how did Amiee have the other pregnancies without any issue (is that the case?). I also sent today's blog to Phil in Minn. to see what he has to add to it. Oh my other ? was they still have Amiee's placenta or how are they still able to run tests on it? Sorry for the ?'s but thanks for the explanations too. Gosh we're thinking of you all soo much and love you guys a bunch!

Love, Rachel

Adam said...

Rachel, No problem with the questions as I am sure others are wondering too :)

Unfortunately for me, the problem with the molar pregnancy is that it originates from the sperm and not the egg. Since the other children are not mine, it didn't effect them because of Aimee.

The hospital has the placenta still on slides for our file, so thank goodness for that.

Thank you for everything :)

Adam and Aimee

Adam said...

Well Wisher,

Thank you so much for your concern. Being a personal training director for Bally Total Fitness, I wouldn't put Aimee or Kayleigh in harms way with any type of diet. If anyone is concerned with foods these days, it is the foods that are grown from our own famous farms. The fertilizers that are dropped to help grow foods faster and larger are the reason for our countries problems with obesity. Maybe Nutrisystem has some extra additives that are herbal or non herbal, but all of the caloric intake is made from the most healthiest types of foods for our body. I would much rather pass along a food to my child that will keep her thin and healthy or somewhat healthy, than obese and unhealty.

The problems with Kayleigh have nothing to do with the Nutrisystem diet as we have a freezer full at the hospital and a freeezer full at home full of milk that was pumped well before Aimee started the diet. Not to mention, she hasn't had any of Aimee's breast milk for over two months.

Thank you so much for your prayers and support through all of this and I wish for a colorful rainbow too.

Gog Bless,

Adam Freeman

Jennifer in NM said...

In the whole emotion of things I failed to mention just how beautiful that little girl is. I love the bottom photo because you can see the weight that she has put on in her cheeks and chin, it is just too adorable. She really does look like a term baby, an angel. Adam, if there is a chromosmal disorder what would that mean for Kayleigh? Are the disorders treatable? I will do some research on my own as well and see what I can figure out.


Unknown said...

Hi guys,

I hope you get all the answers soon! I know how hard it is to wait.I ll be praying for good news :0)

Anonymous said...

Wow, that was alot to take in at one time. I don't know how you and Aimee do it. I would be an emotional wreck! Praying for the best outcome for Aimee and Miss Kayleigh.

God bless,

Anonymous said...

google twin pregnancy mole


Anonymous said...

Guys, it has been very obvious that God's hand has been on you from the beginning!!!! HE is teaching you so much through this phase of your lives, but just be glad you have HIM to take your burdens to. Imagine not knowing GOD!? How would you guys get through?

Find comfort in this and all the prayers and thoughts coming from the thousands of us out here watching and waiting by your side.

Fall into the arms of your Heavenly Father when you can't go on.

Lots of love, and prayers!!!

Anonymous said...

Hopefully Kayleigh won't require any surgery...I'm still doing the poop dance and now singing the lyrics that occumpany it. lol

I'm praying for good results. For all and everything. He is so good. You can tell just by how wonderful life is and how beautiful Kayleigh is. She doesn't still have her wings does she?

Continually praying (and dancing..)


Anonymous said...

this is all so much information to take in. I am sooo amazed by your whole story. it is truely a miracle. after reading the info on the diagonisis' i will definately keep both girls in my thoughts and prayers.

After following your story on babycenter.com when it first started, up until now, i feel like part of the family. reading your posts everyday is part of my daily routine. I first came across your blog on babycenter when i was having problems with my pregnancy. unfortunately mine ended with a miscarriage at 12 weeks, 3 days before Kayleigh was born.

I have to admit that your story has truely helped my with my problems. I laugh and i cry eachday i read your posts.

Thank you for being here for me, although you didnt know it.