About Isaiah

Isaiah is our miracle.

A few days after my 30th birthday, we found out we were expecting.  Isaiah is our first child and we've been itching to be parents for some time.

On Christmas Eve 2012, we got our first glimpse of him and heard his heart beating.  We found out our due date would be August 19th, 2013.

On April 2, 2013, we went in for our 20 week anatomy scan.  We found out that Isaiah is a boy (!!) and that he possibly has dwarfism.  We found out his arms and legs were bowed and curved.  He was in the 5th percentile for growth.  We found out he looked to have Osteogenesis Imperfecta.

And thus began our emotional roller coaster.  We went from a local MFM office to Children's Hospital in Philadelphia to Dupont in Wilmington, DE.


While we saw images of our son sucking his thumb, hiccuping, and yawning, doctors saw a baby whose condition may keep him from ever breathing his first breath; they saw broken arms, legs, and ribs.  Some doctors believed our son had the often lethal type of Osteogenesis Imperfecta, known as type II and other doctors believed he had type III (which is severe, but survivable).

We researched.

We found and joined a wonderful support group on Facebook.

We shared the news with our friends and family.

The support group pointed us in the direction of a wonderful geneticist at A.I. DuPont Children's Hospital in Wilmington, DE.  We made a plan to deliver our son by c-section at one of DuPont's partner hospitals, Thomas Jefferson Hospital, and then have Isaiah transported to Dupont once I was healed.

We were told that Isaiah would be born on August 12, 2013...but Isaiah had other plans.  He decided to come a day early.  You can read about his birth here.

video

Five days after he was born, he was transported to AI DuPont.  At 8 days old, he received his first treatment called Pamidronate. (You'll see that I most off call it PAM.  It's pronounced puh-mij-ruh-nate but it took me about 3 months to learn how to say it right, ha, so I always shorten it out of habit.)

He responded to this first treatment well, which was about a third of what his normal treatments will be.  They did that to see if he'd have any adverse reactions.


Sorry if this picture makes your stomach turn.  Isaiah used to receive PAM through an IV and the scalp is the easiest and safest place to put it...but it sure doesn't look pretty.

The treatment went great! Just as it should!  After his treatment, we spent a few more weeks in the NICU to make sure Isaiah was ok.  We had to learn how to insert a feeding tube and take care of Isaiah's needs in the way of oxygen.  Neither Dave nor I are in the medical field so it was quite the learning experience.  Once we were well versed, we got to take Isaiah home!


We were home for a whole 10 days, and then it was time for Isaiah to get PAM again.  Doctors thought it would be smart for him to be inpatient again, and the NICU agreed to take him back.


What we didn't know was that Isaiah wasn't expelling his CO2 correctly while we were at home and his CO2 level was at a high rate.

When the PAM treatment was added, Isaiah's body went into a bit of a shut down mode.  He swelled up and his lungs even filled with fluid.  At one point, doctors were talking ventilator.  Thankfully, after other machines failed to do the job, they tried a C-PAP.  It looked awful.  But it helped Isaiah's CO2 level get back to a safe zone!  Isaiah quickly got back to his spunky self.  Luckily, Isaiah was able to go home on the C-PAP, but instead of that Hannibal Lector mask, Isaiah had a nasal cannula.


After more 21 days in the nicu, we went home...this time with nightly nursing care and his constant c-pap.


We went back to the NICU a few weeks later for Isaiah's next PAM treatment.  The staff learned everything they could about Isaiah- especially his CO2 level (which was beautiful) and his lung status (the x-ray showed clear lungs filled with air!))  We braced ourselves for another 3 week stay in the NICU...

But everything went great!  Isaiah was in and out in 3 days.

Amazing.

He made a lot of progress, too.  After 4 months of eating through the ng-tube, he learned to eat from a bottle.  At 5 months old, we were able to pull that ng-tube out of his nose for a final time.


At 6 months old, Isaiah had his first surgery to place tubes in his ears and a port in his chest.  The port is used to his pamidronate treatments instead of having to place an IV each time.  At 7 months old, we started to wean Isaiah off of his c-pap.  He was off of it for a month, had a sleep study, and it was discovered that he has obstructive sleep apnea.  He is now continuing on the c-pap at night only and so far has stayed tape-free!

Around 12 months, we noticed Isaiah's head was growing off the growth charts; we followed it closely for some time and then at 18 months, Isaiah was officially diagnosed with Hydrocephalus.  Two months later, Isaiah had surgery to place a shunt to relieve the fluid from his head.


Since surgery, Isaiah's head size has gone down and his head/ torso control have improved dramatically.  He also plays with much more purpose now as compared to before surgery.  


At 23 months, Isaiah got his first wheelchair.  


Isaiah's First Wheelchair from Vicky Martin on Vimeo.

Now, Isaiah's only going back to DuPont as outpatient until it's time for his rodding surgeries.  (The rodding surgeries will hopefully give him the ability to walk some day!)

Isaiah has a lot to teach the world.  He's already shown how strong he is.  He has a will to live that is inspiring...and he will continue to inspire as he grows.
Updated: July 17, 2015

1 comment:

  1. Isaiah is one amazing little man & I have been forever touched by him. I am grateful to have had the opportunity to care for him and to meet you both during this journey. I wish you all the best as he moves onto his next chapter at DuPont. My thoughts and prayers are with the three of you. You will never be forgotten. I look forward to watching him grow & progress on here!
    Hugs,
    Toni
    (Jefferson)

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