9 months

It's National Limb Deficiency Awareness Month! Spread the word about ABS!

Now...

Nikko is not so little anymore...

When everyone told me it goes fast, I didn't realize just how quick it really was. Feels like just last week I was huge pregnant lady. He is such an amazing little boy with so much personality. I feel so blessed to have him in my life.

Life has been crazy between raising a child, working full time, starting my own business, modeling, and attempting to have a social life (yeah right) so I APOLOGIZE for my complete lack of attention to the blog. I missed it to be honest. I love writing about our journey and informing others of the syndrome. I have finally taken some healed photos of Nikko's hand and foot for you all to see in a couple progression photos.

His hand is looking so good and has much more function now that the ring and middle finger are separated.

Our next appointment is the end of this month to schedule our next surgery. We're going to reconstruct the ring finger with the skin from the small pinky nub. There is no function to the small pinky and it makes more sense to remove it to allow the other finger to move freely.

If you have any questions about the procedure/healing process/recovery/etc please don't hesitate to reach out with a comment on this post!

I can't wait to share the business launch with everyone!

As always, thanks for looking!
♡

New Year, New Digits

The day came and went. I am so relieved it's over.

CHOP was amazing. We stayed in Philly the night before to make the morning easier for us. Nikko made himself at home immediately.

Our arrival time was 6am. When we got there, we were almost immediately moved to a pre-op room. Nikko was taken in for surgery at 7:30am. That was one of the hardest things I've ever had to do. Handing him to the nurse was scary. And it hurts me to have to do it a couple more times in the future. He was such a good boy.

We were brought to the waiting area and we're updated after an hour of his progress. The nurse said he was doing very well and they were finishing up. After he was done, they brought him to the recovery room until he woke up from the anesthesia.

When Nikko woke up, he was very out of it from the morphine and the sleepy drugs. It was so sad to see him that way. I'm so used to a happy and chatty little boy. His voice was raspy from the breathing tube and he had scratches and bruises from tape on his face, the IV tube, and the local anesthetics. Poor kid was really beat up and I wish I could have taken his pain from him. They bandaged his hand and foot for the first week until his follow up.

The first day home was horrendous. He was screaming in pain and all we were told to give him was tylenol. I had such bad anxiety trying to calm him. When he slept, it was for extended periods of time. He slept the meds off and started eating normal that evening. The next day and the rest of the week, he was his normal happy self, just slightly confused as to why he had a club hand and foot.

On the 9th, Nikko's bandages were taken off and the first step of his process was revealed! So far he is looking really awesome!

I put this little pic stitch together so you could see the difference as I explain in words what was done.

First, for the middle and ring finger were separated, and a z-plasty was performed on the two protruding skin bumps. The piece of his pinky finger wasn't touched because it will most likely be removed completely since there is no bone present. The surgeon wants to wait to be sure nothing will grow before we make any decision like that.

Second. His big toe was separated from the bunch and also two bones, which would have been the second and third toes, were removed to make that shallow dip between his fourth toe and his big toe. This is to allow them to have a crease between the two as his toes grow. The protruding bump on the top of the foot was removed. No further surgery should be needed on his foot.

Unfortunately, the surgeon believes that the deep creases on his right calf are results of amniotic bands as well, while this whole time I thought they were just really serious fat rolls. Although the mixup makes me giggle, it's another surgery we have to endure. Our next one is going to be mid April before the summer begins. I want him to be able to enjoy the beach and other summer fun.

Nikko is super happy and I am so blessed to have him. He's such a little trooper and I know he will do well in the surgeries to come.

Now me on the other hand...

I'm going to need a couple drinks.

Questions/comments/concerns can be directed to my Facebook page www.fwww.facebook.com/jessmariemodel

Thanks for reading ♡

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!