Thank you for visiting our CaringBridge site. We are using it now to keep everyone updated on Bella's medical journey. We cannot thank everyone enough for the continuous love, prayers and support for Bella and our Family! If you are new to Bella's Journey, here is some background on our beautiful Warrior Princess.
Bella is our 3 year old CDH Warrior and is a pretty complex little gal. We live in Johnston, Iowa and we first found out about Bella’s CDH at our 28 week high risk perinatal ultrasound. I was considered high risk due to our previous pregnancy with Cooper, I had experienced preeclampsia (Also, I have multiple autoimmune disorders and a blood clotting disorder). So we are extremely thankful that we had the additional ultrasound since the CDH was not seen on the 20 week scan. Our local doctors in Des Moines soon decided that mine and Bella’s care needed to be transferred to a facility with additional resources and more knowledge of CDH. We were presented with multiple options, but we chose the closest to home, which was Iowa City. We knew closer to home would be easier on Cooper (he was 8 at the time and is on the Autism Spectrum) and closer to my husband’s work, so he could continue to work through the unexpected. We had no idea how difficult it actually was going to be…
The day arrived and Bella Layne was born full term at 39 weeks by induction on 12/31/2019 with a Left Sided Congenital Diaphragmatic Hernia. Her intestines, stomach and a small part of her liver had entered her left lung and her heart pushed into her right. She fought a long, hard battle of 120 days in the NICU. She was placed on ECMO 2 days after birth with many complications, severe pulmonary hypertension and pulmonary hypoplasia. She also fought through 2 heart defects, sepsis, a pneumothorax with multiple chest tubes, a hemothorax, a pleural effusion, a stroke, multiple instances of collapsed lungs, and cholelithiasis with a gallbladder tear that caused cholecystitis. Bella was finally able to have her repair surgery on 1/29/20, where a patch was placed to repair the hole. She was on ECMO for 8 days, intubated for 55 days and re intubated twice after. At the very end of her NICU journey, feeding became our biggest hurdle. It was ultimately decided Bella needed a g-tube before going home. Throughout Bella's NICU stay we fought battles as a family as well. I lived in Iowa City (2 hours from home) and Cooper and Dad lived back at home, visiting a handful of times when big procedures were scheduled. We all missed each other, but Bella was living minute by minute, and I needed to be by her side. Cooper also struggled emotionally not having his mom home, his new baby sister in the hospital and having to continue with life as normal as possible. Having Autism and having issues processing his emotions made things even harder. And then the pandemic hit. COVID turned our world upside down. The Ronald McDonald House closed, but I was able to stay in Bella's little NICU room. Since we have no family in Iowa, the boys could no longer visit, because during COVID no siblings were allowed to visit, which meant we had no one to watch Cooper while my husband made a trip to Iowa City. So the remainder of Bella's NICU stay was just us girls. This took a toll on everyone.
Fast forward 3 years later, you would not believe that this beautiful little girl had such a rough start. She has a smile that just melts your heart and a personality that brightens anyone's day. In those 3 years she has fought through a lot more... multiple illnesses, hospitalizations, new diagnoses including Cerebral Palsy, a scary one of Adrenal Insufficiency, Hypogammaglobulinaemia, and alopecia totalis which breaks our hearts. She has lost all of her hair on her head including her eyebrows and eyelashes. She has had multiple surgeries and procedures, seen many specialists.... More than most adults go through in a lifetime. And she continues to fight on a daily basis. A huge hurdle we still face is oral eating. She is still completely dependent on her g-tube feeds, which she receives all of her nutrition from. But another hurdle we face is that Bella must use the pump for feeds, she doesn't tolerate syringe or gravity feeds. But despite having to haul a feeding backpack around while she is on the go, Miss Bella does not skip a beat when her energy is at max level! She missed out on exploring the world in her beginning months, so she is definitely making up for it now! Bella still carries her respiratory failure diagnosis and has a diagnosis of BPD, Pulmonary Hypoplasia and now has a diagnosis of Bronchiectasis. So breathing can still be "work" for Bella. So counting respirations, watching color changes, having emergency meds within eyesight, always having the pulse ox charged and within reach, and having oxygen ready to go are always the must haves. Some days, weeks, maybe a month are great but then you have spans where you need it all. Since her Bronchiectasis diagnosis, Bella has now added new equipment, an Airway Clearance VEST to help clear her lung secretions. She uses it twice a day while well and 4 times a day when sick. She is not thrilled about it, but she knows it helps her breathe better and likes how well she can breathe after her treatments, so she is willing to "sit and shake". But Bella makes her own rules and always has. Again, this little girl is such a fighter and when you look at her she will just amaze you! A big step we made was in November 2022, when her doctors decided it was time to send Miss Bella to the Mayo Clinic in Rochester, MN. There were just too many unanswered questions, too many pieces to a puzzle that they couldn't put together. Her referral was quickly accepted and scheduled so quick it made our heads' spin! We thought we would head up there for a week long evaluation with their Aero Digestive team, receive recommendations/ diagnosis/ information and then be sent back home to our care team in Iowa City and Des Moines. Instead the Mayo Team decided Miss Bella needed to see a multitude of specialists and be kept on as an ongoing patient at Mayo. We have made several trips and week long stays in Rochester since November receiving new diagnoses, new tests, procedures, and more clues. That is where we learned about her Bronchiectasis. Also about her Adrenal Insufficiency, which is very disheartening. Currently Bella's Adrenals are not functioning on their own. Which can cause Bella to go into an Adrenal Crisis at any moment. We have emergency injections at home. We have taken multiple ER trips for her crisis'. It's scary. Her Endocrinologist is hoping it is secondary to long term steroid use, and hopefully as we start to wean her steroids, her Adrenal glands will start to function again. But... we cannot wean her steroids because she has Hypogammaglobulinaemia. This means all of her immune antibodies to fight infections are very low. Since she becomes ill so frequently and they last for long periods, and she needs steroids to overcome them, and steroids suppress her adrenals... it was decided that the next step is to start IVIG Infusion Treatments to help support her immune system, which start on 7/20/23 and will be every 3 weeks. Other findings at Mayo have included deficiencies in carnitine and iron, an Egg Allergy requiring her to carry and Epi-Pen at all times now, Alopecia Totalis (possibly Universalis) with no treatment at this time, severe GI reflux... with more studies under way. Her team still believes there is an underlying issue that needs to be discovered. But again, she is a warrior, she is beautiful, she is amazing! She has the best big brother, Cooper, by her side helping her day by day, supporting her. She cannot attend preschool right now due to her immune system, so right now she is learning at home. But she is ready to play and learn with friends! She is definitely Miss Independent! We will get there! Thank you for taking the time to read Bella's story, I'm hoping by sharing it may help others too. Bella is complex, some things are still a mystery, but she is absolutely amazing! Thank you again!
I thought it was probably time to post an update. Miss Bella has been keeping us busy, not just with medical care, but also with her hilarious personality sprouting and her new found independence that keeps us on our toes. Thank goodness we have a dog, Dave!, that always keeps an eye on her and will follow her everywhere, even when she decides to go outside by herself and explore. Ahh!!!
As far as medical care goes, Bella's biggest obstacle these last couple of months has been adjusting to the higher calorie Nourish Peptide formula. Back at her last visit to Mayo, we decided to change her formula to a higher calorie one since she is losing weight again. Well, Bella did not tolerate the change and ended up having vomiting episodes up to 3x a week that led to more weight loss and constipation. So we had to make many adjustments and are now experimenting with another Peptide formula. Still not completely tolerating this new formula either, not gaining weight and having lots of bowel issues. So back to contacting Mayo this week to help get little Miss back on track.
Also we did decide on a surgery date for Bella to have her Velopharyngeal Dysfunction repaired. We decided on the less invasive option, the injection augmentation surgery, and her repair will be on May 28th at Mayo. Prayers would be greatly appreciated! We decided this route since her immune system and adrenal insufficiency are not where they need to be for a big surgery. We will test run the injection to see how much improvement it makes, and later down the road we will discuss a full repair. While she is under sedation, she will also be having a bronchoscopy with lavage to check the status of her lungs, and her Brain MRI and a Sinus MRI.
Overall, Miss Bella has been enjoying the beautiful weather when it decides to show. Her favorite things to do right now are play outside on the swings and the trampoline. She also had a blast this last week when she was gifted an afternoon in a game truck by our amazing neighbor. Bella's NICU Home Day Anniversary (4 years! ) is April 29th, so the game truck was an amazing surprise to help celebrate Bella! Our family made a trip up from Missouri to help celebrate too! Bella and Cooper both had an amazing time! We are so appreciative and grateful to our neighbor and to everyone who loves and supports our kiddos! We are blessed to be surrounded by such amazing people!
I think that is all for now. I will definitely post an update after Bella has her surgery. We cannot thank everyone enough always for all the love, prayers and support! Big hugs to everyone! XOXO
Patients and caregivers love hearing from you; add a comment to show your support.
Help Bella Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Bella's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
