A little backstory for those who don't know to much, we had a complicated pregnancy. At 10 weeks we were told that it was looking like we were likely to lose "twin b" which was Hannah and we were referred to a wonderful team of doctor at Johns Hopkins. I was then seen at Hopkins every week for the remainder of my pregnancy which meant lots of time off work. When Hannah was born we found out that she had a large hole in her heart. The plan initially was to get her on some medication to control her blood pressure and send her home to gain some weight. By 5 weeks Hannah was showing signs of heart failure and her team of doctors decided that her open heart surgery could not be put off any longer, she was not even 6 pounds. Hannah was able to come home at 7 and a half weeks old but she had to come home on a feeding tube and required several follow up doctors appointments. Unfortunately by this time mommys maternity leave was up and because of all the time missed for doctors appointments while pregnant this was all unpaid. Hannah was still having some issues gaining weight so the doctors were having some tests done to try and figure out what could be going on and a sleep study was ordered. The results of the sleep study were alarming, Hannah was have severe apnea episodes while she was sleeping and her oxygen levels were dropping dangerously low. We were told she needed to brought the PICU right away. Hannah needed to have a procedure done to extend her jaw to open her airway so that she can breath and spent another 3 weeks in the PICU. I again had to take unpaid time from work to be with my baby and meet with her doctors. We are finally home and she breathing better than ever but she will have to go back for one more surgery at the end of November to have the devices removed from her jaw.
Thanks for taking a minute to read our reality as of late, we appreciate it. We love our little girl so much and even though this is tough we wouldn't change it for a second.
DonationsSee top donations
- Devon Blackall
- Irina Seabolt
- Karen McLain
- Dawn Vileno
- Kathy Naidamast
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more