Help the Marek Family with Ryan's Medical Expenses

Welcome to the family Ryan! Like me, I'm sure we are all so excited about our new addition, but also feel a little helpless. Jenn, Brandon and Ryan have been through so much these past few weeks so Cory & I thought this is one way to help. They can use the money towards medical bills, lost wages, groceries, medicine or whatever else they need. If you can, please donate. If you cannot, please send love and prayers. 

Love you Jenn, Brandon and sweet baby Ryan

✨From Jenn✨ 

Our hearts are so full! We welcomed our baby boy, Ryan Lucas Marek, on 3/3/2023 at 12:56 pm. He weighed 4 lbs 12 ounces and was 18 inches long. 

In his 3 weeks since arriving, Ryan has shown us an incredible amount of strength and bravery. He has overcome so much and we are so proud of our baby boy. 

 Ryan spent some time in the NICU when he was first born, for support for his lungs and breathing. On 3/11, he was transferred to the PICU at CCMC and at 12 days old, on 3/15, he underwent open heart surgery to fix 3 congenital heart defects. The surgery went well and he has surpassed all of our expectations, showing us what a fighter he is! He had 1 chest tube removed yesterday, 3 chest tubes removed today. He remains intubated and on a vent until he gains a bit more weight to support his lungs and breathing efforts. But, he’s awake and interacting with us. He has the most adorable eyes and makes the cutest expressions. He even holds and squeezes our hand. It’s safe to say that it has been his strength through this all that has given us ours. 

 Thank you to everyone who has reached out to Brandon and I, Ryan’s Grandpa Bob, and his great-grandparents, Laura and Peter. We appreciate each and every one of you as well as your prayers and support. Please keep them coming. Slow and steady.

4/3-4/9: Ryan had a setback this week with feeding and was unable to tolerate his tube feeds resulting in repeated vomiting. After several tries to feed him through the tube in his nose, his doctor decided to give him contrast through the tube and do a special series of X-rays. This revealed that his small intestine is turned in the wrong direction, something called malrotation. He’s going to need surgery after we get him big and strong. His feeding tube was advanced to go past the malformed part of his intestine and we’ve restarted tube feeds. We are praying that this will allow him to absorb nutrients and gain weight. Because of this finding, his doctors decided to delay removing his breathing tube. He remains on a vent and intubated. But, for the first time in his life, he’s over 5 pounds and we are so excited!! We love small victories. Slow and steady. 

4/10-4/16: Ryan has made huge progress this week. He had his breathing tube removed on Wednesday. After that, he was on CPAP for less than a day before being weaned again to 1 liter of nasal cannula, which he remains on currently. We’ve tried to take him off of the oxygen but his levels dip, which shows us he still needs that little bit of oxygen right now. But, having his breathing tube out has meant we can FINALLY hold our baby boy, we are over the moon excited! After much discussion, the surgeons and Ryan’s doctor decided that they were wrong about his original diagnosis of malrotation of his intestines. Instead, his intestines aren’t anchored down and “float” around in his belly (something called wondering duodenum) and he also has reflux. Both of these things were leading him to vomit. However, his team is hoping that as he gains weight from his tube feeds, his fat will anchor down his intestines and he won’t need surgery. It is likely that he will go home with a feeding tube and/or g-tube. But, he is currently at his goal feeding rate for his weight (15mL/hr) and has not vomited at all since restarting the feeds. His IV nutrition has been stopped but he is still receiving IV lipids(fat). He is no longer receiving any IV medications and has been switched to medications through his feeding tube. He continues to be very alert and active. Our hope for this coming week is to continue weaning his medications and oxygen, gain some weight, and have some answers regarding what the future looks like regarding his intestines. We are loving this time with him and getting the chance to experience some “firsts” that we didn’t know if we’d ever have. Thank you for following Ryan’s journey and for your continued love, support, and prayers. Slow and steady.

4/17-4/23: This week has been full of firsts. Ryan was taken off of his oxygen early in the week and has been on room air since, doing wonderfully. On Tuesday, he started drinking from a bottle for the FIRST time and did fabulously. This is something we never thought he’d do… I even put his bottles at home away on Monday night (the irony). He continues to receive tube feeds to make sure he’s getting all of the calories he needs and they increased the feeds to 18mL/hr. Learning how to suck, breathe, and swallow, all at the same time, has been a slow process. But, he’s making progress every day and our hope is that he’ll continue to do so, so that we can go home without a feeding tube! On Wednesday, we received some answers that we had been looking for all of this time. Ryan inherited a gene from me (mom) that is nicknamed “NONO”. Only 16 children, worldwide, have been identified to have this gene, making Ryan the 17th. That doesn’t speak to how rare it is but how few children have been tested. As genetic testing becomes easier and more accessible, we will likely see that number increase. The NONO gene is the reason for his heart defects. He also has very adorable, but long, fingers and toes. This is another trait of the gene. Ryan may also have intellectual disabilities as a result of NONO, including milestone delays, learning disabilities, etc. It’s difficult to determine what this means for Ryan because of the lack of research. We had a super exciting day on Thursday because Ryan graduated from the PICU and moved to a regular floor!! This meant that he could finally meet his extended family and friends for the FIRST time! He met his Great Aunt Kathy on Thursday and then Titi Taylor, his Great Uncle Joe, his great Aunt Linda, and his Great Uncle Larry on Friday. We continue to wean his methadone (pain) and clonidine (sedative) medications. Otherwise, this weekend has been focused on getting Ryan to eat from his bottle consistently. He has been doing wonderfully! Our goal for this week is to continue increasing his bottle feeds and make a decision on the necessity of his feeding tube. If he doesn’t need it, we’d love to have it removed ASAP. Right now, we’re in a swing for the FIRST time. Thank you for the continued love, support, and prayers we are so thankful for them all.

4/24-4/30: This week they moved Ryan's feeding tube from an NJ to an NG. This means that he's getting feeds directly into his stomach. This is huge progress for him! This week has been full of trials and error with adjusting Ryan’s feed amounts, rates, times, and methods. His medical team advanced him from continuous feeds and the bottle to bolus feeds after the bottle. He used to receive 18mL an hour through his tube feed around the clock and then we would give him up to an additional 18mL by bottle every 3 hours. Now, we have a goal of 60mL four times a day (8a, 11a, 2p, & 5p). We give him that amount in his bottle and then anything he doesn't drink, he gets through his feeding tube. (So, if he drinks 20 mL of his bottle, we put the remaining 40 mL through his tube). He typically drinks about 15-25mL each feed. Overnight, he's getting continuous tube feeds at 20 mL per hour to allow him to sleep and save calories to allow him to gain weight. He has vomited a couple of times over the past week. But, overall he is tolerating his feeding tube being in his stomach, which is promising. Although he's doing better with his feedings by mouth, the doctor believes we are going to need a feeding tube when we return home until Ryan is drinking everything he needs nutritionally (receiving it by bottle). Right now, he gets tired and can't finish everything. The doctor has compared the breathing/sucking/swallowing coordination to running a marathon. We have had ongoing discussions regarding what kind of feeding tube he will go home with. This is based on Ryan's needs which, of course, are always changing. The doctor suggests that he have a g-tube surgically placed. She explained that it is easier to care for, less likely to be pulled out, and that most parents are happy with their decision to get one. This surgery is tentatively scheduled for this coming Friday, May 5th. Since they will be doing surgery in the same general location, they have also discussed looking to see what is going on with his intestines and fixing any issue they can at the same time as placing the G-tube. We are waiting for a conversation with the surgeon to determine if the intestinal surgery will be taking place. Brandon and I have been learning how to administer his tube feeds and use his pump. We will also need/have a visiting nurse to visit us at home once Ryan is discharged. Those magic words…discharge, home. There were points in time where we didn’t think bringing Ryan home were a possibility. Now, with the way things are looking, Ryan might be home for Mother’s Day. Thank you for your ongoing love, support, prayers, and donations that have allowed us to be talking about bringing our baby boy home. Slow and steady.

5/1-5/7: This week was primarily focused on our little man gaining as much weight as possible to get ready for his 2nd surgery on Friday to place his g-tube, remove his appendix, and to explore and ultimately fix his intestines. Once the surgeon was able to see his intestines, they determined that he was truly malrotated and required a LADDs procedure. For him, this meant that his intestines were all bunched up in the lower right part of his belly. The purpose of the LADDs procedure was to straighten out his intestines and keep them from twisting. He did fabulously and has returned to the ICU until it is safe for him to begin eating again. This is because he requires heart medication that he was getting through his feeding tube. Since his new g-tube can’t be used yet, he’s getting that heart medication through his IV. The only place that can manage that medication through his IV is the ICU. Otherwise, we believe he would be back on a “regular” floor. We hope to start feeding him through the g-tube in the next day or so! Fingers and toes crossed for discharge home by Mother’s Day. Thank you for the continued love, support, prayers, and donations. They mean so much to us. Slow and steady.

5/8-5/15: Our little man is healing well from his second surgery. Over the past week, we’ve been slowly starting to use his g-tube. He’s getting his formula and most of his medications through his tube and tolerating it all well. The skin around his tube did get a little bit infected and he’s been getting IV antibiotics for that. It’s looking much better and we’re finishing the antibiotics today. Brandon and I have been receiving a lot of education about caring for Ryan when he returns home and his feeding pump and supplies have been delivered to the house. Our goal for this week is to start drinking from a bottle again, see improvement with his infection, and be discharged! We can’t wait to have our baby boy home. Thank you for your continued love, support, prayers, and donations. Slow and steady. 

5/18: We’re home!! Thank you to everyone who has loved and supported us, prayed for us, and to those who donated to Ryan’s go fund me. You have helped us bring Ryan home for the first time in his life (over 10 weeks) and we will be forever grateful! Slow and steady.