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Lainey's Story - Donate Life - Nebraska - Donate Life Nebraska

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Donate Life Nebraska

Real stories about organ, eye and tissue donation in Nebraska.

Lainey's Story

Our family consists of my husband Jeff, our 4-year-old son Keygan, and our 18- month-old daughter Lainey. I was about 5 months along in my pregnancy with Lainey when the doctor noticed problems with our baby's heart. My OB-gyn sent us to two specialists. Each doctor saw something different and at each appointment it seemed as though another deformity was identified. The cardiologists and heart surgeon recorded multiple ultrasounds and showed them at their group patient care conference. Until the day my baby girl was born they had many different ideas about what exactly was wrong with her heart. The first echocardiogram after Lainey's birth confirmed the diagnosis.LaineyFamily

The main two deformities that they identified were Ebstein's Anomaly (a congenital defect in the tricuspid valve on the right side of the heart) and Hypoplastic Left Heart Syndrome (a congenital defect where the left side of the heart is underdeveloped and can't effectively pump blood to the body). One specialist told us that if these two things were actually present that, most likely, they couldn't do anything for her. Three days after her birth they had us sign papers to put her on the heart transplant list.

Lainey's blood type is O-positive, which makes it more difficult to find a match. She was also still around 6 pounds 3 ounces so she needed a tiny little heart. They told us we should be ready to wait a very long time. They educated us about other methods and machines they thought she would need while waiting, everyone was worried she wouldn't make it while waiting for a heart, especially a heart that seemed to be the unicorn of all hearts. She was on the list for only 9 days when we got "the call."

Waiting for the call that will save your child's life seems like it takes a lifetime, no matter how long it actually is. We were getting ourselves so mentally ready for this long drawn-out time spent in a hospital, basically watching our daughter die, that it didn't cross our minds that it could happen sooner rather than later.

We got the call in the morning. I remember even before we got the call how good that day felt. We were still in bed, bumming around and playing with our son. We got the call and were told to cancel our plans and to get to the hospital as soon as we could because we were in for a long night. We all cried and hugged for quite some time, then we called all of our family and friends to let them know this amazing news.

Her recovery was slower than we expected. I think we thought that because she got a heart so fast she'd recover faster! That was certainly not the case. The doctors
also took it slow with her, which really was what was best for her. She had trouble getting off the breathing machine. Her oxygen levels would drop very low when
they'd try to wean her off. She also had trouble keeping her blood pressure under control. Whenever they would come in to do her vitals she would pitch a fit and her blood pressure would sky rocket. All the nurses called her sassy and a diva, which she still is!

Lainey is doing wonderfully now! She is so active; you would never know she had anything wrong with her. She loves to play with her brother, her cousin and our dogs. She runs around all the time and is happy most of the time. She is constantly eating even though you wouldn't guess it by her size. She is a tiny little peanut but she's got a pack to her punch! She loves people and is very friendly--a little too friendly even. She says 'hi' to everyone she sees and will talk your ear off if you let her.

We have not met her donor family but I would like them to know that their decision gave our family a chance to stay whole. That their baby's heart is living inside a little girl that lives her life to the fullest times 2! We are beyond grateful to them for being strong in such a hard and trying time. We also mourn for them; receiving a heart is very bitter sweet. We couldn't be more thankful and sorry at the same time.

I would tell anyone who isn't a donor that they could make all the difference in a person's life. You could save someone's mother or father, brother or sister. You can keep a family whole, and keep them from losing someone that means the world to them.

- By Jessica, Lainey's Mom

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