Hi everyone! As many of you know ever since February, Maybel has been in and out of the hospital and doctors offices. When Maybel was 3 weeks old I noticed she had a cough. I had taken her to the Pediatrician and they were not concerned. She really wasn't gaining weight as she should but they said she was steadily gaining. Well, by 3 months she had got croup, which typically a steriod would help but did not. Her doctor recommended we go to the er and get evaluated. Maybel then was immediately admitted for failure to thrive and an NG feeding tube put in. Her cough wasnt improving after spending 4 days there and we were transferred to Billings Hospital with a whole care team of pediatric specialists waiting for us. They were going to run test but decided due to her low weight and croup it was best to wait and get her weight up. They had us force bottle feed her for 3 days to get her to gain every 3hrs. By the time we got home she refused the bottle all together,
No longer was sleeping and would scream all day long.. She was showing signs up development delay, wasnt growing length and all together was extremely unhappy of a baby. We finally went back to the pulmonologist and GI and they decided they would run the tests needed to find out what was wrong. But in the mean time, she didn't sleep longer then 30 minutes spurts regardless of day or night. I was not sleeping and was trying to work a full time job and take care of her. Her pediatrician had her in for a check up and realized how needed the ng tube was needing to be put back in for Maybels to get sleep and comfort. We were admitted that night back into the hospital on May 2nd and it was almost a night and day difference. She was able to get in for her test and found out that she has Bronchomalacia and tracheomalacia which cause the airways to be floppy and not stay open as they should causing muscus build up in her right lung. She now has to have a breathing treatment numerous times a day and a percussion cup on her lung twice a day. She also has acid reflux that she is on medication to help reduce it. She is still not growing length wise and is getting genetic testing done late August for what is called Angelman syndrome. She now had a gtube that was surgically put in her stomach to allow us to give her those nutrients she just won't take with a bottle. And had physically therapy and eating therapy she has to attend. This has impacted both mine and Matthew's careers as we have had to take mostly unpaid time off to be take her to many appointments, alot of them 2hrs away in Billings. This has cause some stress when now trying to cover the medical bills that were not covered till we hit our deductible for the second time in 1 year. We are hoping to get some help if possible. We don't ask for help often and at this point anything would help. We appreciate you and thank you for taking the time to read about sweet Maybel.
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