On May 23, 2017, we were overjoyed with the sweet gift of Annabelle, though did not join us without difficulties. After a few labor complications, she was quickly swept away by doctors before Mama Bekah and Dad, Jack, could hold her. For days, Annabelle was weak, swollen, and could not breathe or eat unsupervised and assisted. Despite countless doctors and nurses opinions, we still had no definitive answers. Eventually, Annabelle was transferred and admitted to a more permanent home at Texas Childrens Hospital NICU in downtown Houston. Annabelle didn’t get to come home like every other little girl, her parents would have welcomed sleepless nights caused by late night feedings and diaper changes. Instead, they spent nights up wondering who could help their baby finally find relief, and help them find answers.
Annabelle spent the following weeks on oxygen and eating through a feeding tube. She underwent numerous painful testing campaigns, studies, x-rays, and scans.
Doctors, nurses, and specialists worked tirelessly, night and day to try to find out how to help Annabelle. We are forever grateful to those doctors and specialists, nurses, and all the staff at Texas Children’s. Thank you, every day for what you do for families like ours.
Jack and Bekah were with Annabelle every day holding onto any glimmer of hope they could...Trying to be strong for their baby girl, and trying to be strong for each other. Even though it seemed as if life stopped, the expenses piled up...their jobs and paychecks took a back seat to their daughter. Jack lost his job and Bekah is compensated on an hourly basis. Medical bills, parking, gas bills, as well as regular bills like rent, insurance, and utilities, were all adding up..the bank account was struggling to stay afloat, even with both families help.
Finally, there was a dim light at the end of the tunnel. We started to see some progress with our little fighter. Doctors told us they had discovered that Annabelle was missing part of her Chromosome 14. Features that often occur in people with this deletion include developmental delay, intellectual disability, behavioral problems and organ problems. Her deletion causes a disorder called Kagami Ogata Syndrome. There is no long-term data as this syndrome is so new and so rare. ( I beleive there have been less than 60 cases medically reported worldwide as of 2015). While Annabelle seemed to be on the better end of this diagnosis, we did not know if she would be able to walk, talk, stand, or eat orally without assistance. One thing we did know, is it would be a long road together.
Once the G-tube surgery was complete and Annabelle grew a bit stronger, her parents were finally able to take her home to their apartment in Katy. Annabelle was finally home.
Mom and Dad tried to get back on track. Jack continued to work on his graphic design jobs while Bekah went back to work but catching up proved to be more overwhelming than they could handle alone. While they worked hard to cut costs, like moving in with Jacks (my) parents and selling one of their cars, it just wasn’t enough to cover everything with the enormous medical bills flooding in. After all of these trials and tribulations, they lost their only vehicle in hurricane Harvey. It seemed like even Mother Nature was not on their side.
On Thanksgiving, we celebrated Annabelle's 6 month birthday and reflected on how far she had come. We were so proud of her progress.
Just a few short days later, Annabelle was rushed to the ER. Immediately upon evaluation, she was put on monitors due to her heavy labored breathing, and X-rays were taken. It all lead to the diagnosis of severe pneumonia. She was put on high flow oxygen, as her blood saturations were in the low 80s, and that did nothing, so we then moved up to a cpap machine, she held up fairly well on that from about 1 am in the morning till 5 am. She was admitted into the Texas children Pediatric ICU. Annabelle started panicking with the cpap on her face and started desaturation into the low 60s (her usual levels are at 100) and they made the decision to intubate her. Her second Xrays showed the pneumonia getting worse. Now with the intubation she is on a ventilator and is sedated. She’s so sick and weak..but she is the such a strong little girl.
While her selfless parents have chosen to stay by their baby's side at the hospital, there are still bills piling up. Bekah even missed a job interview that would have provided better benefits. (we all know insurance helps soften the blow, but it does not leave you debt free) There will be so many unanswered questions for the rest of her life.
We understand there are so many people in need, but if you feel you are led to donate or share Annabelle’s story, please do. This will go to help Annabelle and her loving parents for the past, present and any future needs. I will be sure these funds go directly to bills associated with Annabelles medical needs.
Update as of 4:45 pm 11/28/17 - from Bekah
Today they did an xray and found that her pneumonia inside her lungs had gotten better, however the pleural effusion (fluid outside the lungs) had gotten worse and the air between her lungs and chest worse as well. Almost 2 hours ago they inserted a chest tube to drain the fluid and air, and did a pic line in her femeral vein to help administer her medications. There is talk of a possible blood transfusion with her hemoglobin levels being so low, and we just had a echo which Thankfully showed that her heart is healthy. She has had some bradychardia (heart rate dropping) which they are attributing to the fentynol drip and the ventilator tube.
11/30 UPDATE from Bekah : today things have taken a bit of a turn for the worse. The infection in her lungs (which had previously gotten better), has come back in full force and worse. Additionally it has spread to her whole body now. Her hemoglobin count is worse again today, and we are still waiting on the hemotologist to come by and discuss our options, and the labs to come back that they sent this morning. (on top of all of this she has alpha Thalassemia) The pleural effusion is still draining through her chest tube, which is good. She started today with the opposite of a fever, 95 degrees which is not good either. So they did everything possible to get her temp back up to normal numbers. Also they have started ipv interventions which is basically them trying to break up the disease in her lungs to make it come out easier. Little bug is all swollen and puffy from all the fluids they're pumping into her
12/1 Update: The fluid output from her chest tube changed to a cloudy/heavier substance. Samples have been sent up to the lab and they beleive it is chylous fluid ( basically lipd and at thats not breaking down in her stomach and it is going into her plearal effusion) so they cannot feed her milk anymore.
Hemotologist just came and explained we need to do a blood transfusion asap. Her hemoglobin counts are at 6.3 and they usually start transfusion for anyone lower than 8. This can come with some complications but the Dr has assuerd as that this is a much safer process than it used to be.
Doctors and pedi surgeons are keeping an eye on her abdomen as it is distended, but say for now her stomach feels soft enough to not take any further action.
Her lungs are breathing over the machines now and the end goal is to get her off the ventilators so her lungs dont start to get lazy and forget what their job is.
They are aso weaning her off of the sedation and pain medicine as babies bodies can start to become addicted very quickly. All will keep an eye on any withdrawel symtoms.
12/4 Update: Wide awake and wiggling for mommy and daddy today. It seems little miss has gotten a little too used to her sedation meds so they don't work for her as well anymore. Annabelles body is currently fighting off two pretty severe infections which they believe is the root of everything going on with her. Ecoli, Staph, and Strep. We are still hanging out on the ventilator, and her chest tube is still training copius amounts of viscous fluid, but her hemoglobin levels have been above her goal, since her blood transfusion, so YAY FOR THAT. Baby steps. We still have a long way to go here at TCH, they're thinking 3 weeks maybe more now . Today we are just thankful to spend the next 3 days here with her without having to leave.
12/12 update: Annabelle is finally stable and extubated, and her chest tube is out. They have removed her 2 pivs and are using only her tunneled PIC line for her medications and her sedations. Little miss is not taking well to being weaned off her sedation from when she was intubated, not only is she still on low doses of her "before" medications, she is on HERIOC amounts of methadone, and Ativan to help ease her withdrawal. We are on Hi...gh flow oxygen still, and having a bit of a time weaning her off of that, and still on the heavy duty antibiotics for her 3 infections. She is now trying 5 MLS of milk to test her and see how her tummy handles it, while still getting iv lipids and tpn to make sure she gets her nutrition. Slow and steady recovery will win the race. Thank you for your continued prayers and concerns. All we want for Christmas is our baby home with us.
12/15 Update: My heart is heavy. This is not the update I wanted to give.. Things have been looking up for the past week and we were finally feeling some relief and seeing the light at the end of the tunnel. Last night after work I stayed up with my sweet angel holding her and snuggling to about 4 am, she had gone down to 7 liters of oxygen and they were planning on weaning her down to a normal cannula and 4 liters. At 10 am they had to bump her up to 15 liters on her high fl...ow because she was coughing and retching (most likely from the withdrawal she is experiencing, and the fact they took her off IV methadone, Ativan, and clonodine, and switched her to PO versions of the drugs - meaning it was going into her g tube, and that means she was getting less of the drugs). Her nurse decided it would be good to give Annabelle tummy time (even though she was already retching and vomiting), and the vomiting got worse, I asked her to put her back on her back to calm things down, then pt, ot, and speech therapy came in 5 minutes later to asses her and play with her, as she was already feeling bad, things deteriorated VERY quickly with her being messed with, she started vomiting more and aspirating her vomit. Within 10 minutes they made the decision to intubate her again, she was desatting in the low 60s and it was necessary at that point. They ran rsv and flu tests and a full winter panel, all which have come back negative THANK GOD, did xray of her lungs and the pneumonia was better, there was some lung collapse however. Currently we are discussing different options with doctors on how to proceed with her lungs weak as they are and the aspirating problem. Thank you for your continued prayers and concerns. All we want is for her to be better. I just wanna hear her sweet voice and hold her in my arms again, things change so quickly in just 24 hours...
Feel free to call, email or text me with any thoughts.
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