2 Weeks Until Surgery

So I haven't posted in a while. I am committed to keeping up with this better going forward. Life has been very busy.

So Nikko is probably one of the happiest babies I've ever known. Always smiling, laughing at just about everything, babbling about who knows what. He is the light of our lives.

He's also obsessed with Mickey Mouse and gets overly excited when he sees him.





Today I received the phone call from anesthesia for his surgery for the pre evaluation questions and to go over what will happen the day of the surgery.

And then I had a panic attack.

I knew it was coming, but hearing what was going to happen made it real. And I've been hysterical all  day. Being that I've been though a very tragic event in my life and lost someone very close to me, I have very little faith in hospitals. I understand CHOP is a very great hospital and this surgery is considered minor, I can't help but think I'm the one case that ends badly. My luck is on the bad end of the spectrum and my mind is really making me worry and over think.

I would appreciate any advice/support/reassurance about my feelings, the surgery, or what to expect.

I hope everyone has a happy and safe holiday.


<3

4 Weeks PP

In Nikko's first month of life, he gained 2lbs 12oz, and the pediatrician called me a cow because of the amount of milk I produce (insert straight face and long sigh here).

Things have been absolutely amazing. Nikko is a complete miracle and a blessing to have in our lives. He is such a happy (and spoiled) baby and we still can't get over the fact that we are parents. We have his baptism in October and I finally have everything set and ready to go with the church and the dining hall afterwards. Invites went out and now we wait for RSVP's. Planning a party is stressful trying to make sure you don't piss off friends or family. At the end of the day, I still don't give a hoot because it's OUR child, OUR party, OUR decision. So basically, we do what we want. (LOL)

I was medically cleared for exercise and all the good stuff and I go back to work on Monday. I am NOT happy about that and we hope one day we can make enough money where I won't have to work.

Our dreams may become reality sooner than we think.

Stay tuned...

<3

Nikko's Arrival

Dominic Ryan O'Donnell
Born June 28th, 2014
9:34pm
8lbs 0oz
20" long

A week and four days early...

Perfectly healthy baby =]

I can't tell you how perfect this little boy is and how he has just completely melted our hearts. To finally hold him in our arms and give him every bit of our love is a complete blessing and the best feeling in the world. All doubt goes out the window and life before him doesn't exist. He is everything we could have ever imagined and more.

I had such a great birth team and I am forever grateful for their support. Eric and April were my cheerleaders while pushing (not to brag or anything, but I popped him out in 37 minutes WITH an epidural) and our families were gathered and waiting before and after his arrival. The delivery went great and my doctor and nurses were absolutely amazing. I cannot picture a better birth experience than this one, which is great considering what giving birth involves! Today was our first appointment at CHOP since Nikko has been out of the womb. We met with our plastic surgeon Dr. Caplan and he knew exactly what has to be done as soon as he looked at his hand and foot. This is what he plans on doing:

His toes are all bunched in the one spot on top of his foot where the random bubble is protruding, which will cause his toes to grow upward. He plans on removing that bubble and separating the bunched up toes under the skin, and creating a straight, flat, smooth line. There will still not be any toes, just a flat top which will allow the foot to grow outward and straight instead of upward and deformed. He will have perfect balance and walk as if he had all ten toes, but the right foot will be slightly shorter than the right, which means we will purchase our shoes from Nordstrom since they sell mismates (and mommy loves shopping at Nordstrom!).


His middle finger will have a Z-Plasty to flatten out the protruding bubble. His ring finger has the finger tip curled underneath the center of the finger, but it has no function to it and function cannot be restored to it, therefore he will remove it completely. His pinky finger will be left alone, and he will separate each of the fingers individually since they are slightly webbed towards the base of the fingers. This will give his hand much more function. The good news is his thumb and pointer finger give him all of the function he really needs, but by doing the surgery, we eliminate the non functional parts and give his fingers more movement.


Our pre surgery appointment is scheduled for November where we will get his hand and foot X-Rays and meet with anesthesia and go over exactly what will happen on surgery day. His surgery is scheduled for January. It was much easier to talk about having surgery on him prior to him being born, but now that he is here, this mommy is nervous. I know it's not as sever a surgery as others, but it's my baby. I don't like seeing him get a shot, let alone under the knife in a surgery. Dr. Caplan is very reassuring and confident and Eric is very calm about it as well. I know something is scary if he starts panicking!


We go back to the pediatrician on Monday so I'll update you on the little mans growth! Thanks for looking!

Week 36

Ok, so I've been a busy little mommy-to-be the past few weeks and have been slacking on the blog (among other things) so here I am to update you on a few things!

First, Nikko is almost here! About three more weeks and I can finally hold him in my arms! For some reason, I don't picture it though. Meaning, I don't picture myself holding him, or picture what life is going to be like. Is this normal? It makes me think that something may go wrong. Am I panicking for no reason? My emotions are going crazy.

Our last appointment at the specialist was at 33 weeks and they measured him to be 6.4 pounds!! Holy crap I'm scared I'm harvesting a monster inside of me! His head and abdomen measured as large as a baby at 38 weeks. I mean, his daddy has a huge noggin and he's about 6'3 so I guess I shouldn't have expected anything less than a big baby.

I went to my OB today and I'm a centimeter dilated. We're inducing at 39 weeks which I am very happy about. Bag is packed and this mama is ready to pop! Sleeping is absolutely not possible. Getting comfortable is a thing of the past with this huge belly and restless legs. I'm so done being pregnant!

On another note, my shower was Saturday 6/7/14!! It was such a beautiful surprise! My friend and the godmother of Nikko April planned and executed the most amazing party I've ever been to. About 70 people (give or take) friends and family gathered for our co-ed shower in her boyfriends parents backyard oasis. The weather was absolutely beautiful, there was an ENDLESS amount of food, a mountain of gifts, and the most adorable decorations and favors. I can't even explain how humbled we were for everything that was done and all of the wonderful gifts we received! I posted a few photos below:

The SURPRISE!

Our amazing cake and cupcakes made by Patty from Carlo's Bakery (AKA Cake Boss) in Red Bank (She's fabulous!)

Made by Enza (She's one of my mom's; I have three =] )

Treats made by April

Holy mountain!!

I love Eric's smile in this photo. Me? I'm sweating and trying to rip these things open before everyone falls asleep!

He wouldn't put down that foam pirate sword. 

My official bow hat.

 FAVORS AND DIAPER CAKES GALORE!

The girl who organized the entire thing! Of course I also have Margaret (Eric's mom), Rachel (My step-mom), and Enza (My other mom) for contributing so much to this! We are so grateful to have you all in our lives!

Not the whole group, but a lot of our friends! Thanks for coming!

Ok, so maybe a little more than a few (and it was difficult to narrow down those pictures) but we absolutely loved every minute of it!

NEXT ON THE DOCKET:

The nursery is COMPLETE!! Yes I went cray cray for about two weeks and got it done! I am so worried he may come early and I don't want to have to worry about anything. So now I will bombard you with those photos. I'm no photographer, but I am so proud of this nursery. Most of it was handmade and DIY projects which includes the ship mast and everything on it (rope ladders by myself and crows nest by Eric were from scratch). The mirror and the decals on it were done by me with rope, felt, and buttons. The paper lanterns were decorations from my baby shower and I just made the little felt sailboats and anchor and hung them in whatever way they looked nice. The DRO letters were from my shower that almost everyone signed. The rope photo boards above the TV were handmade with thin rope and photo frames. The photos along the window were purchased as instant downloads from Etsy and I just bought frames and photo paper and mounted them on the wall. The rest was purchased, but I have NEVER been this creative in my life. I'd like to thank Pinterest and my newly born mommy brain for the outcome of this project. All it needs it baby!!! I watermarked all of them because I worked too damn hard to have anyone take the photos or ideas as their own. 

The letters were from my baby shower. All the guests were able to sign them instead of having a guest book. Such a perfect idea. DRO= Dominic Ryan O'Donnell. Eric said if he is ever a rapper, he already has a stage name -__-

Now everyone is updated! Sorry for my delay, as you can see, I've been a little busy! Please feel free to ask me any questions about How-To's for the nursery if you see anything you might want to try or to check out additional photos over on my Facebook page -- CLICK HERE

Thank you so much for reading and I shall post again after my next growth scan with the specialist next week! Lots of love to everyone!

Week 31

Hello all! Sorry I haven't posted, but I don't want to post a million little posts, but instead make larger posts to not annoy and bombard readers with little clips of what's going on.

In other news, baby Nikko is almost THREE WEEKS ahead of schedule in size! The specialist said he has a big head and a big belly (which I have his daddy to thank for that) and the only thing that is on target is the size of his femur bones! So although I am going to most likely have a big baby (gosh I'm scared) he is completely healthy! I'm hoping he evens out over the next nine weeks and he's under 9 pounds. No bands, except the same one that is floating in the fluid since we found out about the ABS and we go back for another growth scan on May 22nd.

This Friday, Eric (baby daddy in case anyone hasn't caught onto that already) and I are going to an appointment at the Children's Hospital of Philadelphia to speak with an orthopedic surgeon about our post pregnancy options. We will mostly be talking about the separation of his little fingers on the right hand and what can be done to elongate them (if necessary).

I don't know if I posted on here about my doctor leaving the practice I'm at, but I was extremely devastated to hear that she was. She was there with me from the beginning and has been the woman in contact with the specialist since the ABS was discovered. I was going to follow her to her new practice, but it's about 30 minutes further than where I'm at now and I also found out she is at a clinic and will be training and working with the students doing their residency at the hospital she is now affiliated with. It pains me to not see her and have her deliver our little boy, but it won't benefit me to move all of my info and treatment to a new office at a new hospital that is further away. I do have a doctor at my current practice that I love as well and she is now overseeing my care and will deliver the baby.

I will post over the weekend to let everyone know about the CHOP appointment.

Here's a side profile of our little man! He moves so much which makes it extremely difficult to get a 4D image of him!

And I leave you with a photo from my maternity shoot over the weekend. They came out absolutely beautiful and I hope you all enjoy it as well! There is more over on my Facebook--CLICK HERE and I also have two more scheduled for this coming weekend and the beginning of next month!

Week 26

Hello out there!

So it's been a few weeks since my last post, my apologies. I've been busy with online classes and for some reason, I've been extremely tired lately. Also, my round ligaments are in so much pain from all the stretching that I can barely stand up straight! I threw up the other day out of no where, but then quickly stopped at McDonalds for a crispy chicken sandwich to make up for it. We also had the pleasure of visiting the hospital at 1AM this past Friday because I was screaming and crying in pain from these ligament pains and thought I was in labor. God I'm frightened for the day it actually happens since that pain WASN'T labor.

Anyhow, baby Nikko is doing fabulous! We went to the specialist yesterday and there are no changes on the scans so we are still in the clear from any other bands! I go back to see her again on April 21st for a full body growth scan.

So here is little mans right hand again. I posted a basic ultrasound and a 4D ultrasound so you can see things a little bit better and put things into perspective a bit more. You can see the arrows pointing to the thumb (which he is slightly bending on his own so don't think that he is missing any of it) as well as the index finger, followed by the last three fingers which are shortened and fused together.

In the 4D image, his thumb is tucked behind his hand and you can see the pointer finger pointing to the right followed by the last three fingers which are fused together.

I want to make women/girls/others understand something that is THE MOST ANNOYING THING TO DO TO A NEW SOON TO BE MOM:

STOP TELLING ME HOW YOU DID IT! STOP TELLING ME WHAT I NEED TO DO! STOP TELLING ME WHAT IS GOOD/BAD FOR MY BABY AS PER WHAT YOU THINK! STOP TELLING ME WHAT KIND OF NAZI YOU ARE WHEN IT COMES TO PARENTING! 

Newsflash ladiessssss... I DON'T GIVE A S*#T!!!!

The most annoying thing people continuously do is one of the following sentences:

1. "I did this with my baby"

2. "You need to do this with your baby"

3. "This is good for your baby"

4. "He will probably like what I did with my baby"

5. "I'm just saying, it worked with my baby"

6. "I'm sorry to ask you that, but I'm just a carseat nazi"

7. "I like to tell all new moms what I did with my baby"

ETC, ETC, ETC

You all give me the urge to punch you in the damn throat. Please just do you, and I will be just fine. I don't need concern, I don't need assistance, and if I have concern or need assistance, I will ask. So just stop with your comments. I don't want/need to hear/see them. Just because you had a kid or two, does not mean you know everything about what MY child will need/want/be. Just because I am a new mom, does not mean I'm a complete invalid. I'm not a 15 year old child, I am a 24 year old woman. I make my own money, pay for my own bills, and put my damn big girl pants on every morning all by myself. Let me parent and do what I want with my kid. Thanks.

Anywho...

I know I have nothing juicy to say this week, but as long as there is no bad news, I don't really care who reads my blog. This is for other people to learn about the syndrome as well as allow other mothers like myself who are dealing with this same scenario to be able to relate. This also allows me to get out my own thoughts and feelings and document my pregnancy so I have something to look back on since I have the mushiest brain on the planet and everyone is lucky I remember to put pants on when leaving the house.

I leave you with a couple selfies:

The little man <3

And myself =]

Hope I don't bore everyone too much! Thanks for looking!

PS. If anyone ever has questions/comments/concerns/hatefire they would like to reach out to me about, please go to my Facebook page at www.facebook.com/JessSmudin

<3

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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