Supporting the Baker Family

UPDATE (4/14): It is with very heavy hearts that we share our sweet Rosalie Elegance gained her angel’s wings on Sunday in the arms of her mom and dad. While we are saddened that she is no longer here with us, we are so very grateful for the time we had. We are also comforted knowing she is in perfect form with her Heavenly Father and we will see her again one day.

The outpouring of support we have all received during these past months is nothing short of incredible. There are no words to express how blessed we are to be surrounded by such loving people. We appreciate your continued prayers and support as we all grieve this incredible loss and begin to find a way to heal.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” ~Psalm 73:26

UPDATE (3/1): Our two families have come together in amazing fashion and our little peanut will get to Children’s Hospital Colorado today! Jared will fly with her and they should be at the hospital by 7:30 p.m. Colby is on the road and should be here around 9 p.m. Bumi is staying with his grandparents in Missouri while things get settled here and when Jared is able to make his next trip, Bumi will come here and finally get to meet his little sister! Jared will travel back and forth when he can because of his work, so there will be a lot of separation of their family for the foreseeable future. We are all so appreciative of your love and support during this time. The Baker’s could use continued prayers for Rosalie’s health and strength as they navigate this time with part of their family in Colorado and part in Missouri.

UPDATE (2/28): Our sweet Rosalie is just over two months old now and, overall, she is doing very well. She has finally started taking in her momma’s milk and is tolerating her feeds well. She is getting 2ml/hour via her OG-tube and is slowly gaining weight. She is now 1880g or 4lbs. 2oz., and counting. Her doctors feel she is ready to be taken off her breathing tube. However, because of the rare nature of her complications and the need for more comprehensive and experienced care, Jared and Colby have decided to have Rosalie transferred to Children’s Hospital Colorado and they don't want to ex-tubate her before transfer. Unfortunately, insurance is so far not approving that transfer and, without insurance, the air transport will cost their sweet family nearly $50,000! We have been blown away by the outpouring of support over these months and your continued support is greatly appreciated. Please help us get our little peanut the best care possible!

UPDATE (1/23): After an eventful day, Rosalie underwent another surgery. The doctors were able to cover all of Rosalie’s organs with a skin substitute essentially creating a baseball-to-softball sized hernia in her abdomen. Surgically, the next step will be a final repair of that hernia likely when she is 3 or 4 years old.

Right now, Rosalie is working through recovering from today’s surgery and toward breathing on her own without the ventilator. As with any surgery, there is a risk for infection, but the outlook right now is very good. Colby and Jared are exhausted from the long day, but beyond grateful for the good news from the surgery. We should know more about when they can finally hold their baby girl and work on feeding her in the coming days.

Thank you to everyone who has checked in, sent prayers and been there to support Colby, Jared, Bumi, Rosalie and their extended family.

UPDATE (1/16): Three weeks after she was born, Rosalie continues to be a fighter! She underwent surgery last week to work on getting her organs back into her abdomen. She did very well, but they weren't able to get much inside at first because of the small size of her abdomen. The organs the surgeon could not get in were put into a clear silo bag to protect them. Since that surgery, about half of the organs are now inside her abdomen. As the doctors continue to reduce the silo bag, Rosalie is on several medications to prevent infection and keep her from moving the silo bag around too much.

Over the next week, the doctors hope to have the remaining organs inside and go in to place a skin substitute over them. At that point, the omphalocele will look like a large hernia that doctors will fix several years down the line. If all goes to plan, we will move into waiting for Rosalie to make normal preemie/newborn milestones to be ready to go home.

Jared and Colby have found a good routine between spending time with Rosalie at the hospital and with Bumi at home. Bumi is a proud big brother and will tell anyone who will listen about his baby Rosalie.

Rosalie continues to surpass expectations and fight like crazy. We are so grateful for the strides she has made and the care she has gotten. Thank you for your continued support, prayers and love.

UPDATE (1/1): Rosalie Elegance is one week old today! She continues to be a fierce little fighter. This past week she was extubated and put onto a CPAP machine to help her breathe. Her care team is focusing on keeping her comfortable while she builds her strength. Once she is strong enough, they will schedule her next surgery.

Colby continues her recovery and is splitting time, along with Jared, between hims with Bumi and the hospital with Rosalie. Bumi doesn’t get to visit Rosalie in the NICU, but he learns more about her everyday through FaceTime and pictures. He’s also enjoying some extra time with his grandparents from Colorado.

We are probably starting to sound like a broken record, but we truly could not get through this without all your love and support. We still have a long way to go, so we ask for your continued thoughts and prayers.

UPDATE (12/26): We hope you all had a merry Christmas. Things looked a little different for our family this year because my niece decided to make her appearance 10 weeks early. Rosalie Elegance was born on Christmas Day at 4:09 a.m. weighing just over 2 lbs in Columbia, MO. Her doctors were pleased with her lung function, so several hours after she was born she underwent surgery to put a covering over her organs to keep them warm and moist. She is stable, but in critical condition and in for a long road ahead. Doctors are keeping a very close eye on her and she is well loved and cared for.

Colby is recovering from her C-section at the hospital and she and Jared are by Rosalie’s side whenever possible. Bumi is adjusting to the circumstances very well. He isn’t allowed in the NICU because of his age, but he spends time with his mom and dad at the hospital when he can and learns more about his baby sister through his inquisitive nature and many pictures. When he’s not at the hospital, he’s spending time with his grandparents, who are all four in Columbia right now.

Rosalie is our little Christmas miracle and we are all overjoyed that she is here and doing well. However, 2024 is going to be a long road for all of us. We don’t know exactly how long Rosalie will be in the hospital, only that it could be this summer before she gets to go home. That will mean a lot of driving between their home and the hospital, a lot of DoorDash meals and mountains of hospital bills. It is so important to all of us that Colby and Jared be able to focus solely on caring for their two children without the stress of finances. If you can, we would love for you to donate to help cover the financial burden. If you have any questions, please feel free to reach out.

We are so appreciative of all your love, support and prayers through this entire journey. We couldn’t get through this without all of you.

UPDATE (12/7): Over the last few months, Colby and Jared have been to a number of doctor’s appointments and even ventured to Colorado this week for a third opinion with a specialist team at Children’s Hospital Colorado.

At that visit, Colby had another ultrasound, an MRI and an echocardiogram to give the doctors more insights into Rosalie’s situation. While there isn’t much new information, Colby and Jared both felt very encouraged after the appointment. The care team said Rosalie’s blood flow is good, her heart and brain look good and they are reassured that the size of her lungs can help her through the multiple surgeries and months long recovery Rosalie will endure when she gets here. They also mentioned that while Rosalie is quite small, she is very active and growing a lot which is a good sign.

After a lot of thought, consideration of all the specialists they have seen and prayer, the Baker’s have decided to temporarily relocate to Colorado instead of Kansas City for Rosalie’s care. This change does come with some extra challenges for their growing family.

To start, Colby and Bumi will need to relocate at the end of January without Jared, who won’t be able to make it until Rosalie’s scheduled appearance (or if she happened to come sooner) because of his work. Jared’s work does not offer paid paternity leave, so he is trying to optimize his time working to support their family before he spends 12 weeks without pay especially since Colby can’t work right now. It will be a tough time emotionally and mentally for their family to be split during those few weeks and we ask for your continued thoughts and prayers as they navigate that.

Additionally, while going without an income and hospital bills piling up, Colby, Jared and Bumi will be away from home until May, June or beyond which adds its own financial strain. While they do have a lot of support in the area, there will be a lot of times that they are at Rosalie’s bedside with their only options for food being fast food or hospital food (thank goodness for DoorDash!) There will also be a lot of commuting to and from the hospital to spend time with Bumi and just get some air or rest. Plus, with Jared only having 12 weeks off work, he will need to go home to Missouri earlier than the rest of the family and make trips back and forth when he can and, if gas prices stay this way, that can get very pricey.

Our hope is that the Bakers don’t have to worry about the financial piece of Rosalie’s care. We want them to be able to focus on loving Bumi and Rosalie, being strong for Bumi and Rosalie and supporting both Bumi and Rosalie’s health.

We have been floored by the generosity and love we have gotten from of all of you. We appreciate your continued support from the bottom of our hearts.

ORIGINAL: Colby and Jared are over the moon to be expecting baby Rosalie in 2024. However, things are going to look a little different for their family when she makes her debut.

In her very young life, Rosalie is facing many challenges. Her belly didn't close as she developed, so many of her organs are growing outside her body. This condition means she will need numerous surgeries shortly after she enters this world, an extended NICU stay and a relocation to Kansas City for the whole family while she’s in the hospital.

We want the Bakers to be able to focus on helping this new baby grow and thrive in her new world as well as navigating life as a family of four with Bumi’s new job as big brother. Therefore, we are asking for any help you can offer to help lift the financial burden from their shoulders. All donations will go toward medical bills, travel expenses to and from the hospital, relocation, and anything else the Bakers may need during the early days of Rosalie’s life. We appreciate all your love and support as we rally around their family.

If you would like more information on Rosalie's condition, click the links below.

Facts about Gastroschisis

Delivery & Treatment of Babies with Gastroschisis