Week 23

So we went to the specialist on the 6th and baby Nikko is looking fabulous! There are no band attachments that we can see as of right now and the bands she does see are freely moving and no longer attached (happy dance)! Next appointment is on the 17th so keeping my fingers crossed for good news again!

Here's my little mans right foot. As you can see, no sign of full toes. We do see some of what would be his big toe, but that's about it.

Nikko's right hand, as you can see, the middle, ring, and pinky fingers are fused together causing a syndactyly due to the band attachment. His thumb is in front of the hand (kind of hidden) and his pointer finger is on the top.

To give you a better idea of how his hand is positioned, I took a photo of my granny hand:

And lastly, here is his cute little profile picture! He's got the cutest little button nose! 16 more weeks!

On another note...

Something happened the other day and it really got under my skin, so please give me some feedback on what you think of the situation. I'll try to explain this as clearly as possible without sounding like a ranting maniac.

I received a phone call from a relative on my mothers side of the gene pool.  Just to fill you in, I don't speak to anyone on my mothers side of the family and haven't spoken to them in almost two years due to their inability to be non judgmental about things such as tattoos and career choice, as well as their incapability to be happy for their children/grandchildren and not be complete narcissistic individuals. To continue, this relative was acting as if we have been talking to each other forever; asking tons of questions about myself and my boyfriend, work related questions, etc. I was very polite because I am very happy with my life and that eliminated the drama they feed on within their lives and I did not want to cause myself to get angry. This relative then proceeds to tell me they know I am pregnant and heard something was "wrong" with my baby.......

What would make this relative think that?!

Turns out, a certain person I know and have been friendly with for some time now, decided it was necessary to tell my sister, whom I also do not speak to, that something is "wrong" with my baby.

I. Was. Furious.

I did keep calm and told this relative "I'm not sure what you've heard, but there is nothing wrong with my baby." This relative told me the name of the person who told my sister, and we continued our short conversation.

What angers me IS NOT that this person went and told my sister, it is HOW they told her. Something is "wrong" with my baby? I'm sorry, but I don't find a cosmetic imperfection that does not affect the way the baby thinks, lives, and breathes as something being "wrong" with him. Am I incorrect in this situation? As much as my pregnant hormones are telling me to rip this person a new one, I don't need any added stress or problems in my life, nor do care enough about this person and our so called "friendship" (more like a frenemy) to pursue. I get it, I have started a blog about what is going on and I am putting it out there for everyone to see. That is the point! So everyone can know about the syndrome and how carefully it needs to be monitored! What I don't get is why this person made it a point to reach out to my family and say something that is absolutely and completely incorrect about my unborn child.

Ok, end rant. I'm sorry, but it was something that was bothering me and I wanted to get some opinions. Thanks for looking and I'll update in about a week after our next checkup!

<3

Week 22

Today I met with my OB/GYN about disability. She put me out until the end of the pregnancy (thank gosh because I'm a nervous wreck to do ANYTHING) and gave me prescriptions to see my specialist every two weeks. My biggest fear is delivering pre-term because of being too active and my amniotic sac just gives out. I also have to see my OB every two weeks so I have SOOOO much to look forward to! Sorry for my sarcasm. I don't mean to make fun out of a serious situation, but that just my way of hiding how worried I am. I'll do absolutely anything and everything without complaint to make sure this syndrome does not progress any more than it already has.

Basically, the specialist is checking to make sure there are no constrictions or creasing in the baby as he grows. If she sees either, then we have another problem on our hands which will involve fetal surgery. The risk involved with that is pre-term labor. I'm crossing my fingers and praying these next 18 weeks or so will be band-free! My OB/GYN is just keeping tabs on my overall health and connecting with the specialist to continue to monitor the pregnancy.

I've been very strong about the entire situation, but I can't help but blame myself, even though it's nothing I've done. You know when something horrible happens to someone or something in your life and no matter if it's a complete stretch and far from being even remotely possible, you still find a way to blame yourself? Story of my life. But anyways, I will keep posting after each appointment about any new information that comes about. For now, here's a baby bump for your pleasure (since baby bumps are so attractive)! 

By the way, I can see my boobs in my peripheral vision. I've never had DD boobs. This is crazy.

Thanks for reading =]

Week 20

It's amazing how quickly something so perfect can change in one office visit.

I went to my specialist appointment Thursday February 20, 2014. My doctor requires two visits to the specialist; One during the first trimester and one at about 18-22 weeks gestation. Thankful that I didn't see the doctor I saw during my first trimester (total asshole who mentioned "I'm the doctor all the new moms hate"), I was so excited to see our little man and how big he was getting.

Doctor Susan Janeczek, who is a perinatologist out of Robert Wood Johnson, and  happened to be her first time in the Centra State Medical Center office, was the doctor who diagnosed my baby with Amniotic Band Syndrome (ABS). She must have explained it to me three times while I was an absolute hysterical mess and also ran and grabbed my doctor who happened to be in the hospital at the time of my appointment. My world had crumbled on top of me... why me? I do everything right, and this happens to my baby.

I'm going to make this easy to understand for everyone as the point of this blog is to document my pregnancy and our journey through the syndrome as well as create awareness to current and future mothers. My doctor REQUIRES EVERY PATIENT to see a perinatologist. I was told your regular office visits and sonograms DO NOT look for things like this.  ABS ranges widely from 1 in 1200 to 1 in 15,000 live births and it is RARELY caught prior to delivery. I was extremely fortunate to have such an amazing specialist find this so I can monitor my baby through the rest of the pregnancy and prevent it from getting any worse.

PLEASE DO NOT TAKE THIS AS A SYMPATHY PLEA! I AM NOT LOOKING FOR SYMPATHY! I WANT EVERYONE TO BE AWARE SO YOU ARE NOT A MOTHER OR A FATHER WHO IS IN THE DELIVERY ROOM WONDERING WHY YOU BABY IS MISSING LIMBS!

So to get this started, I want to give you a photo to see while I describe what ABS is:

Let me also make this clear: THERE IS NO ROOT CAUSE TO AMNIOTIC BAND SYNDROME. IT IS A SPONTANEOUS SYNDROME. 

LET'S CALL IT "THE LUCK OF THE DRAW".

The amnion ruptures from unknown causes between weeks 12-18 causing these fibers to float within the amniotic fluid. These fibers are very sticky. If they stick to the baby's face, they can cause deformities such as cleft lip or cleft palate. If they stick to an extremity such as the arm or leg, as the baby moves in the womb, it can become wrapped around the extremity causing the band. The band can either be very tight or just loosely wrapped. The band causes constriction of blood flow to whichever part of the body it is affecting and could ultimately result in amputation. If the band is loosely wrapped, it should be monitored. If not, as the baby grows, it can also cause loss of blood flow and amputation. 

These bands can be released by fetal surgery, in which they enter the uterus and remove the band with a small laser so they baby can have blood flow returned to the extremity. It may also be lifesaving if wrapped around your baby's umbilical cord. Another result of ABS is preterm labor. On average, women who were diagnosed with this delivered at 32 weeks.

This is why it is extremely important to see a specialist who knows about these fetal anomalies and conditions. Although your OB may know about them, these are not things they look for and a sonography tech does not look for them either. Please don't think "This would never happen to me" because I swear, I was that girl last week. It can happen and change your entire life. 

Our baby was diagnosed with ABS Thursday and we went to the Children's Hospital of Philadelphia (CHOP) yesterday for an all day appointment filled with examinations. We had an Echocardiogram of the baby's heart as well as a full body ultrasound scan that lasted almost three hours. They looked at every part of the uterus, the baby's extremities, face, abdomen, thoracic cavity, and made sure he had all of his organs.

Originally, the specialist had seen that Nikko had a thumb and pointer finger on his right hand, but the other three were not complete fingers, and his right foot did not have complete toes. She also saw the band was still attached to his right foot where his toes were incomplete. His other hand and foot were perfectly fine.

CHOP's findings were about the same with a little more hope! Nikko indeed had a thumb and pointer finger on his right hand, but his other three fingers were amputated at the first knuckle off of the hand. I posted a photo below of a similar case:

CHOP also found that Nikko's toes on his right foot were indeed amputated at the first knuckle after the foot. I posted a photo below of a similar case, but it is what his foot will look like in his adult stages of life:

CHOP also saw that there are currently no bands attached to his foot as found in the original findings, but we are returning to the same specialist that found the bands in Freehold once every two weeks to monitor my pregnancy. These bands are so hard to see on an ultrasound, which is another reason why it is almost never found prior to birth.

Our baby Nikko is an extremely healthy baby and will live a completely normal life. He has a normal brain, heart, and everything else you and I have. He will only be cosmetically affected by this syndrome. One of our options was termination of the pregnancy because there is no likelihood of this occurring in another pregnancy, but I feel it is extremely selfish to kill my child because of cosmetic imperfection. I can't terminate my child when it is a perfectly healthy baby.

In the photo below, you can see his right hand up to his face and what this syndrome has done to affect his fingers. Right now, the middle finger, ring finger, and pinky are fused together because of the band, which can be separated after birth by an orthopedic surgeon if necessary. He looks a little funny because 3D ultrasounds are usually not good until 28 weeks when the baby has meat on his bones.

I will continue to post on this blog about our appointments and any new findings throughout pregnancy. We are so excited about meeting our little man and feel we are very blessed to have caught this. If anyone is interested in seeing the specialist I see, feel free to ask me for her information. If you have any questions about ABS, feel free to ask me as well. I have done tons of research and spoken with many doctors and surgeons about the syndrome.

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