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.
The Freemans :)