A Little Extra Heart for Jerome
It all really began when Helen went in for her anatomy ultrasound. In a room full of nothing but love, each person celebrated in their own way when they announced that Helen and Evan would be having a baby boy: Evan cheered over the increase in testosterone in the house (and dinosaurs, and football, and being right), Helen’s Mom wept silently with joy over seeing her first ever biological grandson (she already has three grandsons that she is glowingly proud of, but this would be the first one that would have a piece of her with him always), Helen’s sister Hal sat with her hands covering her mouth, which was agape with wonder that her baby sister could be having a baby at all, trying to hold back the tears, and Helen laughed and yelled about how she really thought it was a girl because her Dad told her it was a girl and he had never been wrong before, which lead to her coming up with the perfect girl name, and that moment shot her straight back to square one. While everyone laughed and continued to reside over the moon, Helen’s Mom and sister could not help but notice that the sonographer seemed to be taking an inordinate number of images of the baby’s heart. They just tried to tell themselves that baby was especially uncooperative, but deep down, they knew that wasn’t the case.
Everyone was then asked to wait until a doctor could come in and speak with Helen and Evan. Hal and Becky offered to leave, but Helen said they could stay. The doctor came in and informed Helen that her very first baby has a calcium deposit in his heart. While the calcium deposit doesn’t generally do any harm, it is a marker for down syndrome. But, he only had the one marker, the doctor wasn’t worried, Helen wasn’t worried, and everyone was free to go. The doctor just wanted to make sure Helen and Evan were aware of it.
Then, the pandemic arrived in America, and it became an especially scary time for the Joda crew. What could possibly be worse than Helen experiencing her first pregnancy alone when the CDC initially recommended that no one be present during the birth? It was a terrifying prospect, despite what a strong woman Helen is.
When restrictions lightened up and Helen was able to have her doting husband and greatest champion in the room with her, it seemed like things were looking up. In true 2020 fashion, however, things never got smoother or easier. Eventually, Helen would be diagnosed with Gestational Diabetes, and in true Webber-Genetics fashion, she was a wonder even to the dietitian. But, she persevered.
Next came the dozens of moments that she swore were go-time moments, only to be sorely disappointed. On July 1st, she felt 100% certain that it was time, and even her Mom and sister had this strange feeling that it was. She went to the hospital to get checked, but was sent home not too long after, tears in her eyes and frustration in her heart. Evan decided to treat her to some take out to make her feel better, so they washed their hands, dawned their masks, and were walking into the restaurant… when her water breaks. She was right! It really was go-time!
She made it back to the hospital and, unfortunately, didn’t even get to really attempt to have a “natural” birth: if Helen failed to position herself in a specific way on the bed, the baby’s heartrate would drop to worrisome levels. Choosing to play things safe, the doctors decided very quickly that it would be wise to go straight for a cesarean.
Evan kept everyone in the know as best he could while his family as well as hers sat at work or at home, worried, wondering if everyone was okay, being distraught that they couldn’t be there to receive updates as events occurred. Thankfully, everything turned out fine in the end, and Helen brought into this world a son who looks just like his Daddy save for his ears, which he got from his Mommy. He is beautiful, brought a new shine into the universe with him, took right to nursing, and it seemed like everything was finally going to be just fine. The world could now be a better place because Jerome Dyer Joda was in it.
Fast forward to Jerome’s one month checkup, and it’s like Helen was right back in that first anatomy ultrasound: it was Jerome’s heart once more. This time, it began with a heart murmur. Initially, they thought it was an issue with his arteries, that they were bent 90* causing them to make a sound when the blood hit them. Oftentimes, these issues resolves themselves in a month, so they put him on a diuretic, moved his next appointment, and sent them on their way.
When Jerome’s 2 month checkup came around, Helen found that she wasn't crazy: her son really was much tinier than he should have been. He went from the 25th percentile for weight, down to the 2nd percentile. In only one month, he dropped down that far because he had effectively ceased gaining weight. Additionally, the murmur had cranked its volume up to eleven. There were questions over whether or not the calcium deposit had caused this, but the answer was no. It was an entirely separate issue.
They rushed to get Jerome in with a cardiologist who performed an echocardiogram and they quickly diagnosed Jerome with what his pediatrician had feared most: VSD, or Ventricular Septal Defect. In short, little Jerome has a large hole in his heart. The sound of the murmur was consistent with what they call the “VSD Washing Machine” because the whooshing sound is so loud, it sounds more like a washing machine than a heart. They tried the few options they had to avoid the inevitable, but nothing worked, and it was decided that Jerome would require open heart surgery.
When Jerome continued to struggle with weight gain, Helen and Evan decided to put their foot down and jump straight into the rough of it: they told the doctor it was best if they went straight for the feeding tube, for the safety of Jerome, rather than continuing to try this and that to see if anything else worked. The doctors were actually relieved they'd made this decision.
The next issue they faced was, if Jerome didn’t start gaining weight with the feeding tube, they would have had to rush into surgery. Thankfully, the feeding tube appears to be working, and Jerome is finally on his way to gaining weight!
They want Jerome to be at least four months old, and weigh thirteen pounds, before the surgery happens. Presently, he is proudly sitting at ten pounds at three months old, meaning in as little as a month, he will be scheduled for surgery. It would be unreal and amazing if we could reach even half of our goal before they have to hit the road.
The surgery will be happening in Denver, Colorado, and that is a large part of why we are here asking for help.
The following are just some of the medical expenses they are waiting on bills for:
· Feeding tube
· Feeding tube placement
· Seeing specialists, including dieticians and the cardiologist
· Trying out a diuretic as an option to get the heart to heal itself
· Requiring special formula, for which he has a prescription but still has to pay an out of pocket copay for
· Weekly visits with his regular pediatrician to track his weight gain
· Potential feeding tube replacements should Jerome pull his out
· Bandages to hold the tube to his face
They may also require funds for some, or all, of the following:
· Fuel to get to and from Denver
· Funds for a hotel for while they are there or along the way should Jerome end up not being the best road trip baby (they will be required to keep him as calm as possible, at four months old, in a car for an eight hour drive)
· Meals and snacks
· Oil change(s)
· Possible purchase of good winter tires and/or a tune up on the vehicle they take, just to be extra safe on the road
· Wiper blades
· Other trip essentials that may arise
· Money to wash their clothes while in Denver
Post-surgery, they will require funds for:
· The ability to afford food/room and board/etc. as they likely will spend a week in Denver while Jerome recovers in the hospital
· Follow-up appointments that may include echocardiograms and/or electrocardiograms
· An appointment to remove the stitches if they don’t stitch internally
· Prescriptions for things like pain meds, as well as other OTC medications like anti-inflammatories
· Prescriptions for antibiotics for things as simple as a dental procedure since his heart valves will be high risk for infection
As everyone knows, life is capable of throwing everyone for a loop, and boy has the Joda family been thrown for a big one. Your generous donation not only helps cover the aforementioned and the unforeseen, but it also buys peace of mind that is utterly priceless. At a time like this, the last thing they should be stressing about is their financial situation. What they should be able to focus on is the health and recovery of their beautiful son!
If you aren’t a fan of donating here, and would rather send a check or cash, please feel free to connect with the campaign organizers, Helen’s sister Hal or Helen’s sister-in-law Jen, who will ensure the money gets to Helen and Evan.
If you would prefer to assist in some other way, I will be working on a list of things they would benefit from having. These can obviously be given directly to Helen and Evan, or Hal and Jen are happy to act as middle man. For now, here is a start:
· Kimono style/side snap onesies: They were told they are handy for when Jerome has to be connected to lots of monitors with wires (Such as these, in Newborn and/or 0-3 month: https://smile.amazon.com/Lovedbaby-Unisex-Baby-Organic-Bodysuit-Seafoam/dp/B00O0O5J9O/ref=sr_1_8?dchild=1&keywords=kimono+style+onesie&qid=1601627190&sr=8-8)
· Fun Ng tube tape such as: https://www.etsy.com/listing/768743154/ng-tube-nasogastric-or-oxygen-tube?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=feeding+tube+sticker&ref=sc_gallery-1-1&plkey=e916869161500c57e512106ffc3442c6a01f8e63%3A768743154
· Ng tube pouches: https://www.etsy.com/listing/814352030/toot-toot-cars-buses-vehicles-tubie-love?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=ng+tube+pouch&ref=sr_gallery-1-5&organic_search_click=1&cns=1
This GoFundMe page will be updated every step of the way because I know that the love for Helen, Evan, May and Miller as individuals is greater than anything they could even begin to fathom, which means there is no way their newest addition to their family doesn’t already have that level of love surrounding him as well, so I’m certain updates will be wanted and expected!
For those of you who took the time to read the entire novel that is this campaign, thank you so much for taking the time. For everyone else sighing over how verbose this is, I give you:
TL;DR: A wonderful human being’s first experience in motherhood is about to include her four month old having open heart surgery. This will require travel, lots of medication, and any number of curve-ball expenses. Listed above are some of the anticipated expenses, as well as options for gifts if donating money is not something you are interested in doing. Donors also have the choice of connecting with Hal (sister) or Jen (sister-in-law) if you would prefer to donate funds outside of this platform.
Whether you donate a dollar, buy a onesie, or simply share the campaign, we cannot thank you enough for your help in making sure that Helen and Evan get to focus on what’s important rather than be burdened by finances. They also appreciate your thoughts, prayers, positive energy sent their way, or any other way in which you practice what you believe to send them love, strength, and healing.
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Organizer and beneficiary
Billings Metropolitan Area, MT