Florida
Amber Mallard
HUB Leader
florida@averysangels.org
I’m Amber Mallard, Florida’s HUB leader and Advocate for AAGF! The reason I volunteer for Avery’s Angels is because of my little girl Aleyece! I wanted to be able to give back to a foundation & community of amazing families who are always there for you when you need them. Without them I wouldn’t have been prepared for what was to come when Aleyece was born. It’s a great feeling to contribute and give back to people who are going through the same things daily and for new families that are in need of support and answers to help give them more peace with what is happening and to be prepared for the long road ahead. I’m so proud to be part of this amazing organization!
Aleyece was born on May 24, 2012 by a planned C-Section when I was 36weeks and 1 day into my pregnancy with Dr.Mcgrath at Baptist Downtown Jacksonville,Florida. She was born with a birth defect called Gastroshisis. 1 in 2229 Babies Are Born With Gastroschisis Every Year. We found out that Aleyece was going to have this birth defect around 13 weeks into the pregnancy and we were followed very closely with routine ultrasounds and weekly stress test. They also began to follow her kidneys due to one kidney showing hydronephrosis. I found a group called Avery’s Angels Gastroschisis Foundation which was a support group for survivor and Angel parents and families. They were amazing with helping out and giving me all of the resources to learn more about what to expect with her condition. Alot of people are puzzled when they hear the word Gastroschisis, It causes the intestines to protrude outside the belly, results from a weakness in the abdominal wall and must be repaired surgically. Gastroschisis is not normal. Although a fetus’ intestines will develop outside its body for a time, they should be totally internalized at the time of birth. As soon as Aleyece was delivered at7:01am Dr.Poulos from Nemours Children’s Hospital took her into surgery for her closure to put all of her small and large Intestines,stomach,bladder and fallopian tubes all back inside her little belly. Aleyece did amazing through it all and after wards was on the breathing tube for a while. Her stay in the NICU was 31 days but it felt like a lifetime to us. She had her main primary nurse Kelley Harrison who was like a second mother to her and us. She was god sent to take care of our sweet little Aleyece. After about a week into her NICU stay we received a phone call from a doctor in the early morning saying that we needed to get to the hospital as soon as possible that something had gone wrong. We came into the room where Aleyece was, only to find 6-7 doctor’s and Nurse’s in her room she was swollen and black and blue all over. They found that she had a Central Line Infection near her heart and started running test and blood work immediately and ordered a scan of her whole top half even her head. After the scan we learned that she had a large thrombosis in her vena cava. It being so close she was watched extremely close and also started getting shots called lovenoxx (blood thinner) to help reduce the clotting. It was a rollercoster ride all over for us. We were still awaiting the day that Aleyece would begin feeds. Aleyece had her first 7ml of milk on June 6th 2012 which was an amazing step in the right direction for her considering all of the bile had to leave her body before she could be introduced to milk. Once started she was increased with milk by the day and only had one small set back with her feeds. Within a week she was eating a full bottle like a normal baby! The biggest step once the feeds began was to see if her body could digest and produce bowl movements. We never thought we would be so excited for a bowl movement about 4 days into her feeds she had her first bowl movement. That was the best day ever that meant that her little stomach had no issues after the surgery and was working the way it was intended to. Being in the NICU really is a rollercoster because there are times your so excited and thinking they are so close to coming home and then they end up with set backs. Aleyece ended up having 3 blood transfusions while in the NICU. Aleyece finally moved over to the B side of the NICU which meant she was even closer to coming home about half way through her stay. Once, on the B side of the NICU Kelley began to show me how the Lovenoxx injections were given to her twice a dose and showed me how to read the dosage. I began practicing on a fake baby with the Lovenoxx shots which was very scary to me. Knowing that I had to give these shots to my daughter in the near future scared me to death. I finally became comfortable with this and a few days before her getting to come home I started giving her the Lovenoxx injections while I was visiting. I cried like a big baby every single time but I knew it was something that had to be done for her to be able to come home with us and have a normal family life. Once we were home we spent most of our time with different specialty doctors and weekly checkups. Aleyece is almost 2 years old this year and has came a very long way. She see’s only half of the doctors she used to see thankfully. She is still followed by plenty of amazing doctors which have helped her on her amazing journey!