With this being our first post, I want to make sure everyone is up to date, so I will start from the beginning. Just a warning, it's a lot of information...
Back in October we opted to have AFP testing. AFP stands for Alpha-Fetoprotein. It's a protein the baby produces, and all they have to do for the testing is take my blood and test it. If the AFP levels are higher then normal, it can mean a variety of things from the expected due date to the baby could have spina bifida, gastroschisis, and possibly chromosome problems. Our primary doctor called and levels were elevated, so she was going to send us to meet with a specialist.
On November 2nd we went and meet with a genetic counselor first, went over what we could possibly be facing, and then we waited for our ultrasound. The tech did her thing, and then the doctor came in. Thinking we could possibly be facing spina bifida as the worst case scenario, we were not in the least bit prepared for what came next.
The doctor started his list. First he saw the in fact Anabelle's intestines are outside her abdomen, leading to why the AFP levels were so elevated. Then he noticed her feet are clubbed, said she is missing her knee caps, and her arms don't move correctly. Also, she was measuring about a week smaller then she should. The position she was in made it difficult for the doctor to see everything he needed, but he also said that he had a concern about her heart, but wasn't sure. With this, we decided to have an amniocentesis performed, which I was not ready for! Regardless we had the amnio, and waited 8-10 days for the results. They tested Anabelle's chromosomes for any abnormalities, specifically Trisomy 18. We got the results back, and they couldn't find anything wrong with her chromosomes.
Next we did a test for the Rh factor we have to deal with with any pregnancy due to the antibodies in my blood. When the test for this, they also did a test called a Microarray. Both tests were done using the amniotic fluid they took from the amniocentesis. The test just came back on Monday. Anabelle does have at least one little c. This means if the antibodies in my blood become strong and smart they can attack the red blood cells in Anabelle's blood, causing anemia. To monitor this, they do an ultrasound and tract her blood flow in her brain. Luckily, so far that doesn't seem to be an issue. As far as the Microarray goes... what they test for is strands in the DNA that are incorrect. They also test to see if there is any additional or missing pieces of any chromosomes. Unfortunately, they usually have about only a 10% success rate of finding anything and we were part of the 90%. They found nothing wrong, which is good, and bad. It's good because it shows that there isn't a big chromosome issue, if any at all. But bad, because now we have no idea what to expect. There is no further testing they can think to do now, and we will just have to wait and see how things go.
Today we had our follow up ultrasound to tract Anabelle's growth and check her blood flow.
Today we learned that her knee caps might come in time, we will just have to wait for a definite answer with time. Also, it appears her growth is slowing down, and she is about two weeks behind now. The doctor said that she doesn't expect that to improve, but rather get worse. Also they could she her arms and hands a little better, and they think her wrists and hands are turned in. (Imagine trying to touch your fingers to the inside of your forearms.) She also said that she believes she might have a hole in her heart, but is unsure, so she is going to have us meet and have a consult with a cardiologist. Next, she said she wasn't sure if she could see the aorta. We got a chance to ask all of our questions, but unfortunately without a diagnosis, there are not a lot of answers available. There is nothing I can do or take to help her in any way, we have no idea what to expect, we don't know what can be operated on, etc etc.
With all of this said... We will be delivering at UCD, and will be having a consult with a neonatologist from UCD.
We will be having ultrasounds every two weeks to check her blood flow and growth, and I will keep everyone posted.
We will try to post something every couple days. We'll try to keep everyone posted on what is going on with us and our family. Again, thank you all for your continued support and love.
With love,
The Polks
Baby Anabelle, this is your Papa Phil, I want to tell you some things. Things you don’t know yet because you’re still safe and warm in your Momma Kayla’s tummy. First I want you to know how many great people you have, that love you so much and can’t wait to meet you.
ReplyDeleteYou have the bestest Mommy and Daddy in the world, they are working very hard to make sure you get to us as safe and sound as possible, and they are gonna love you so much, that you will think you are the luckiest little girl in the world. I’ve known your daddy his whole life, cause I am his daddy. And he is an awesome daddy; he has always been great with kids, very kind and protective. I have watched him with your big sisters ( Ya you have two sisters) and am always amazed at how loving and patient he is with them. I hope you like to wrestle and play a lot cause your daddy is the best at it.
I’ve only known your Mommy for 4 yrs. But I could tell right away that she was a keeper! She works very hard to make sure her family is taken care of. And when she is home her whole life is her family, she loves your daddy and sisters so very much and will still have all the love you need when you get to us. I will tell you a little secret, but you gotta promise not to tell. Your mommy has a hard time resisting cute little girls…. Your sisters will teach you the right look to give and mommy will cave every time.
Now if having the best Mommy and Daddy in the world sounds pretty good, there is more. You also have two awesome big sisters. Amelia Mae and Alison Paige. Boy are you gonna love them, they will be the best sisters ever. They both love to play dress up, but Amelia really likes to play the princess, she has tons of cool princess stuff that I know she will share with you. Alli is the little clown and cuddler..She loves to make people laugh and then get up and cuddle. They both are real hams and will always stop to have their picture taken. They will fill you in on posing for the best pictures.
And that is just the beginning; you have a whole bunch of other family that is waiting for you. You have a Gma, aGrammie, a GG and a Dee Dee. You also have 3 gpa’s…. well actual I think it is two Papa’s and a Gpa. Then you have aunts and uncles and too many cousins to count. So you see that you are gonna have all the love and support you will ever need. If you ever get tired or scared all you gotta do is look up and you will see these people looking over you.
There is so much wonderful stuff I could tell you about, sights and sounds and colors…. Flowers, rainbows, puppies and more. But those are things for you to experience for yourself. Every day will be a day filled with new things, new joys and much love.
For now you job is too rest and get as strong as you can in the next few months…. We are all here, and we all love you, and we will take care of the rest when you join us. Whatever you need sweetheart!
Love you bunches and bunches
Papa Phil