Main fundraiser photo

Jordan's Journey

So it all started 12/30/13 when we found an abnormality on our 28th week ultrasound. We were told Jordan had a heart defect and a brain abnormality. The rest of the pregnancy was such an emotional whirlwind. We were told he had something called Hypoplastic Left Heart. This is one of the worst cardiac birth defects, as children will die in the first week of life with no surgical intervention, and the expected lifespan is much less, not to mention quality of life. Little did we know that heart defects are the #1 birth defect, occurring every 1 in 100 babies born. His brain anomaly they called ventriculomegaly, which is enlarged ventricles in the brain. We were referred to Columbus, OH  for the remainder of our pregnancy, as no one in the Lexington, KY area is apparently equipped to deal with such a surgery.

We did get a normal result of 46XY from the amniocentesis, but we continued on with a more detailed genetic test called a microarray to see if we could get some answers as to why this happened. Although we did not get an answer to his heart and brain abnormalities, the results did come back stating that Jordan has a deletion on his 16th chromosome. It is referred to as 16p12.2. It is a rare chromosome disorder with not a lot of information available. We do know he has one abnormal copy of the gene, so he is only a carrier. If he were to have two abnormal copies, he would be deaf. The amount of information or DNA deleted can also determine how many issues/disorders/symptoms one has. According to his geneticist, his missing information is a smaller chunk than most children who exhibit symptoms (such as developmental delays, learning disabilities, etc.). We've also learned that a lot of people have deletions and don't even know it, as this type of advanced testing is a relatively new concept, and was never available in the past....so we remain hopeful. We have since had ourselves tested to dig a little deeper in an effort to find out some "why's", but won't have any results for another few months.

Fast forward to our 36 week check up in Columbus. They say the amniotic fluid is too low and they must deliver him that day. And there he was: Jordan Drew Skrobot, 6 lbs. 1 oz and 20 inches long.



So thankfully in this case, the original Doctor had a misdiagnosis, and he actually did not have HLHS. He did, however, have something called Double Outlet Right Ventricle, and Transposition of the Great Arteries, as well as pulmonary stenosis, holes in his heart (ASD & VSD) and couple of other things. In this case, the pulmonary stenosis allowed him to bypass surgery and let him grow and get a little bigger. Bigger hearts are easier to fix than itty bitty hearts. The holes in his heart allowed his blood to mix, and actually helped him, so we couldn't believe he did not need surgery right away, thank goodness.  After two weeks in the ICU, we got to come home. The enlarged ventricles in his brain continued to increase in size, but were not creating excessive pressure, so he did not require any surgical intervention, just monitoring, although this was now officially called hydrocephalus. We were also shocked and saddened to learn that Jordan was missing his septum pellucidum and only had a partially developed corpus collusum. (Parts of the brain). At this point, he seems to be "normal", and we can only hope he will continue to be. One more surprise we were not expecting was another birth defect on Jordan's head called an occipital cephalocele. It is basically a sac of fluid protruding from the skull where spinal fluid is leaking into it. Thankfully it was only spinal fluid and no brain tissue, so it was a less risky operation. So a few months later, he had surgery to close the gap in his skull and remove the sac of fluid.

Here he is for his first surgery:



Thankfully his heart was holding up enough to take care of his first surgery while we were waiting for his heart to grow. Because he had his "bump", he had to lay certain ways, which created plagiocephaly, and his skull was malformed and needed treatment with a helmet. He was, however, the cutest helmet baby ever! ;-)



In the meantime, Jordan is monitored by his orthotist for his helmet therapy, his cardiologist and home nurses for his heart, as well as his pediatrician, trips to Columbus to meet with his neurologist and Neo-neural clinic to check his development, as well as follow ups with his neurosurgeon and geneticist. He has physical therapy and occupational therapy and also has a urologist that follows him, as he will need a minor surgery on his boy parts as well. 

He is a happy baby, though, despite all he has gone through so far. As his oxygen saturations begin to decrease, we plan for his open heart surgery.

Here he is, the morning of the big day...bright-eyed and happy at 5:30 am!



The surgery itself went fairly well, other than the cardiothoracic surgeon had a last minute change of plan during his surgery, as his anatomy was a little different than expected, so the original surgery would not have been compatible with life. So thankful for the knowledge and skilled hands of these medical professionals who dedicate their life to saving our little ones. ♥

Here is Jordan recovering after his open heart surgery on 10/10/14.



Well, the surgery itself went fine, but the complications afterward are keeping us here in the hospital. :-(

Jordan refuses to eat anything, so now he feeds via NG tube. He has developed pleural effusions and pulmonary edema (fluid issues with the lungs) which make his oxygen supply low. Here he was a couple weeks after his heart surgery...looking pretty good considering everything he just went through!



Our "normally" pretty happy baby has continuously been fussy and irritated, and starting puking all his tube feeds. We've discovered that not only does he have extra fluid build up in the lungs, but now his head is under pressure from too much fluid and he now requires a brain shunt surgery. Here he is, 3 weeks after his open heart, right before his brain shunt surgery. We try to capture the happy when we can!



Here he is recovering after his brain shunt surgery, poor baby. He's gone through so much. :-(



We have been here for 5 weeks now, and are still fighting the lung issues, and feeding difficulties. He will eventually have a surgery for Gtube in his stomach, but we are at a standstill, as his oxygen requirements need to be under control before he can have another surgery, so here we wait...

He has been dropping to the 30's and 40's the last few nights and needed 8 liters per minute of 100% oxygen last night to get back up. So scary!

I got a half smile out of him today, I'll take it! I sure miss my happy baby! Still sweet, but can't wait to have the whole him back, smiling and laughing and playing.



If we can get his issues under wraps in the next few weeks, we can finally come home to our life. We never imagined we would have to be here so long...I miss my other "baby" Jaxon back in Kentucky, too!

He's such a good big brother, and I  know they miss each other, too :-(



So yes, it has been quite the year....emotionally, mentally, and of course, financially. I have given up my job to care for him, as he requires a lot of time with all of his appointments and care. We will continue to meet with his specialists, surgeons, doctors, nurses, and therapists to do whatever we can to try keeping him on track and improving the quality of his life.

So many of you have asked if you can do anything to let you know, so this is your chance. So many times, we say "thank you, we'll let you know", never intending to ask for anything. And some of you have already helped, so thank you! As time goes on, bills and expenses are continuing to pile up, and thankfully, many of you are still wanting to help, so we are letting you know that this is what will help us.  Any amount is appreciated and useful. If you can contribute, we are so grateful! If you can not, please continue to pray and pull for Jordan's recovery. We are still thankful! 



The Skrobots

Donations 

  • Scott Selzer
    • $610 
    • 9 yrs

Organizer

Melissa Tracy Skrobot
Organizer
Richmond, KY

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.