One Year

An entire year came and went. I cannot tell you how much of a blessing he is to us and how complete he makes our lives. 

Right now, no further surgeries are needed unless things are not growing properly. Nikko got his first pair of real shoes from Nordstrom not too long ago (for mommies with children who have limb deficiencies affecting the feet, they sell mis-mates to accommodate the size difference) and he has hit the ground running (pun intended) and every worry we have ever had went out the window. He throws with both hands, eats with his right hand, walks on his tip toes, and continues to amaze us every day. 

I was trying to figure out where to go with the blog. It's kind of the reason I've been slightly MIA (the other being I've been working my butt off in preparation for the purchase of our future home) and I've come to the conclusion that I will write about whatever the heck I want. Of course I will write about Nikko. This will be my way of writing down milestones, accomplishments, and stories to tell his future self. Also, I'm forever here for the moms who have questions, need advice, or need someone to talk to or relate with when it comes to having a child with a limb deficiency (I hate saying that word "deficient" because it hasn't slowed him one damn bit). 

Signing off. Now I have to blog app on my phone, so it's right in my face all day. I'm excited to write again and interact with mommies across the world. Keep the emails coming! Comments are always welcome!

-Jess ❤️

Second Surgery

If things could be any more hectic these days, I'd be thrown in a looney bin.

Anyways, Nikko just went through his second surgery and I had my second series of panic attacks. This kid is such a trooper. Two days after surgery, he was walking around like he didn't just have his ankle chopped up by Zorro.  We are now six days post-op and he is his normal self. It amazes me how quickly he bounces back. Although the decision to have your baby undergo surgery early in their little life is hard, I know it is the best decision for his growth and development.

Enough of my blabbing. Here are the photos pre and post op.

He is recovering and healing beautifully! Tomorrow we head back to Philly for our follow up appointment. I will update with more photos after. Now that I have an app to update blogs on my phone, I have no excuse not to post regularly. If you have any questions or comments, please post them below!

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!