Help Us Support Baby Eliza
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Baby Eliza was born on April 14, 2022 and after spending some time in the NICU for hypoglycemia she was diagnosed with truncus arteriosus type 1, a congenital heart defect that required open heart surgery. She was sent to Childrens Mercy and had the defect repaired with a conduit at 11 days old.
We spent 32 days in the hospital and away from home. Overall she did well but had some complications with her heart rhythm and she was subsequently diagnosed with Ectopic Atrial Tachycardia. The intubation from surgery paralyzed one of her vocal chords so she has relied on an NG tube to eat. Eating by mouth requires a lot of energy on her part and she is easily fatigued, which has caused her to not gain weight fast enough. On top of that she has been dealing with reflux, vomiting with nearly every feed, and the doctor suspects she may have a milk protein allergy so we are using a hypoallergenic formula that we fortify to help her gain weight.
Recently we noticed her breathing was more labored and her tolerance for oral feeds steadily declined. We went to our routine follow up with our cardiologist on July 12 and we were immediately sent back to Children’s Mercy in KC. Further imaging showed she had developed a 3 cm pseudo aneurysm on her proximal conduit requiring a second heart surgery ASAP. Surgery is scheduled for tomorrow July 14. Eliza will be three months old. They will perform another open heart surgery to replace the conduit. We expected a few more OHS in her life to replace the conduit as she outgrows them, but we certainly did not expect to need another surgery this soon. We expect to be up here another week at least.
Zane returned to work this week, but will now need additional time off. I was due to return to work last week, but was able to extend unpaid leave as Eliza is not able to be cared for by anyone other than mom and dad at this time. I was able to take 6 weeks of short term disability and have since relied on the PTO I had saved up which was only about 6 weeks worth. When I return to work we expect it to be part time. So with this additional, unexpected surgery, and unplanned time off work, things have gotten tight.
Everyone has been so generous supporting us monetarily, emotionally, and back home while we have extended time away (especially from our furbabies). We hate to ask for anything but people often ask how they can support us and of course any financial support eases some of the difficult challenges our family is navigating.
Eliza is so strong and we are trying to be just as strong as her so we can watch her grow into the strong woman she’ll be.
Thank you again and we will keep everyone updated on her progress. ❤️
We spent 32 days in the hospital and away from home. Overall she did well but had some complications with her heart rhythm and she was subsequently diagnosed with Ectopic Atrial Tachycardia. The intubation from surgery paralyzed one of her vocal chords so she has relied on an NG tube to eat. Eating by mouth requires a lot of energy on her part and she is easily fatigued, which has caused her to not gain weight fast enough. On top of that she has been dealing with reflux, vomiting with nearly every feed, and the doctor suspects she may have a milk protein allergy so we are using a hypoallergenic formula that we fortify to help her gain weight.
Recently we noticed her breathing was more labored and her tolerance for oral feeds steadily declined. We went to our routine follow up with our cardiologist on July 12 and we were immediately sent back to Children’s Mercy in KC. Further imaging showed she had developed a 3 cm pseudo aneurysm on her proximal conduit requiring a second heart surgery ASAP. Surgery is scheduled for tomorrow July 14. Eliza will be three months old. They will perform another open heart surgery to replace the conduit. We expected a few more OHS in her life to replace the conduit as she outgrows them, but we certainly did not expect to need another surgery this soon. We expect to be up here another week at least.
Zane returned to work this week, but will now need additional time off. I was due to return to work last week, but was able to extend unpaid leave as Eliza is not able to be cared for by anyone other than mom and dad at this time. I was able to take 6 weeks of short term disability and have since relied on the PTO I had saved up which was only about 6 weeks worth. When I return to work we expect it to be part time. So with this additional, unexpected surgery, and unplanned time off work, things have gotten tight.
Everyone has been so generous supporting us monetarily, emotionally, and back home while we have extended time away (especially from our furbabies). We hate to ask for anything but people often ask how they can support us and of course any financial support eases some of the difficult challenges our family is navigating.
Eliza is so strong and we are trying to be just as strong as her so we can watch her grow into the strong woman she’ll be.
Thank you again and we will keep everyone updated on her progress. ❤️
Organizer
Amanda May
Organizer
Wichita, KS