Melvin’s Story

Site created on November 13, 2018

Melvin Josiah was born at home on September 6, 2018, weighing 7 lbs. 11 oz. & 18 1/2” long. Within a couple of moments after birth, our midwife knew something wasn't quite right, so we took baby Melvin to the Raleigh WakeMed Hospital 3 hours later. Throughout the next several days, the doctors did all kinds of tests and scans, etc., to figure out what was going on. Besides the obvious physical differences of being born with more than five fingers on each hand, a narrow chest and a little bit of a cleft lip; they ended up diagnosing him with Ellis-Van Creveld Syndrome...a rare genetic disorder characterized by short limb dwarfism. They found a hole in his heart that will require open-heart surgery between 12-15 months of life, among many other things. After a few weeks of watching him closely and communicating with doctors at AI DuPont Hospital in Wilmington, Delaware (where the syndrome has been dealt with before), the decision was made to transfer little Melvin by helicopter to Duke Hospital in Durham, NC, to better care for his needs. While at Duke, baby Melvin has had a couple of bad episodes while the doctors and nurses try to get him the correct amount of oxygen, calories through Suzanne's milk, meds, etc. At the first hospital, we (and even some friends every once in a while) were able to stay with him every night in his private room in the NICU. Unfortunately, we do not have this opportunity at Duke--where Melvin is one of four little babies in one room. We have been doing everything possible along with the medical team to get him to a point where he is strong enough to go home.
On Thanksgiving Day, Nov. 22nd, he started getting super air hungry early morning & when he couldn’t calm down after 7 hours, they decided to intubate him again since his heart & respiratory rate just kept going up. This is now Monday, the 26th, & he is still on the ventilator but on minimal settings, so the plan from here is to try taking him off again in a few days to see if he tolerates it on the nasal cannula again. If he doesn’t tolerate it well, we will re-evaluate & see if it will be necessary to do a temporary tracheostomy. We will try everything else possible before that but if it gets to that point, we trust that is God’s plan. We believe in miracles!
Thank you so much to all of you for your support & encouragement you’ve been showing us these past few months! Love you all...

Newest Update

Journal entry by Suzanne Stoltzfus

Hello friends & family,

I hope y'all are doing well! We are planning to head to PA/DE tomorrow for a few appointments with Melvin's specialists in DE this week & wanted to keep you all updated. First of all, he has been doing so well with the changes we made this year so far. He is still off the ventilator all awake hours & now off for his nap as well! He is still on at night with minimal settings. We have an appointment for a heart catherization which is scheduled for Tuesday, July 7th, at AI DuPont Hospital, which will give his specialists more of an idea of how his heart is progressing. They will use the results of the cath to see if he needs the trach for another winter or not. If they think his heart isn't quite ready to do without the ventilator at night we will likely just keep the trach until next summer. His pulmonologist explained to me that if they would take the trach out too soon we could potentially run into lots of other problems like sleep apnea, etc. Of course, we would love if we could take out the trach this summer but we are trusting in God's perfect timing for that.

This will be a short update since there is lots of work to be done getting ready for a trip... I will update y'all once we are home again, & until then we are so thankful for all your prayers for safety, staying healthy & away from the virus, & for everyone that we're working with to keep Melvin's best interest in mind.

Love & hugs,
The Stoltzfus family
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