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Lilly Ann Usher

This is my beautiful daughter Lilly. My pregnancy was a surprise to her father and I, we found out on Feb 14, 2012 the day my fiance also proposed to me. My words exactly “im glad you want to spend the rsst of youre life with me because im pregnant!”. That day is where our journey started. At 18 weeks gestation we found out we were having a girl, and couldnt have been any more happy, until the doctor had a concerened look on her face and sent us to my doctor. My doctor the. explained to me and my fiance that it appears our daughter had hydrocephalus and we had to be sent to a specialist. My first visit with my specialist was a horrible one, sitting there not knowing what was wrong with my baby. The doctor explained to us all about hydrocephalus and how she may not even survive (like most doctors she had no bedside manner). Throughout our visits with the specialist it became a reality that we may only have our daughter for a short while, it was a tough reality but one that we couldnt change. At 28 weeks gestation we had an ultrasound done at the local childrens hospital, afterwards we had a visit from a neurosurgeon, a social worker, and a nurse whom all explained that our daughter would be nothing but a vegetable and we should abort and we only had 2 days to decide, I INSTANTLY stopped seeing those doctors no one in the world could tell us that our baby shouldnt live for as long as she possibly can. In the next few weeks my specialist and I sat down to talk about birthing options wether natural birth or c-section would be the best, i decided to not take any risks and have a c section. On october 22, 2012 at 10:46 a.m our gorgeous baby girl Lilly was born. The moment we heard her cry we knew she was going to be ok and she was a strong girl. Lilly weighed 6lbs 4oz and was 18 inches long, we couldnt have asked for a more perfect angel. The nurse and doctors took a look over her to see if she needed to be transfered to the childrens hospital right away or the NICU but she seemed fine and went right up to the room with me which we were estatic about. A few hours later our whole worlds changed in the matter of minutes. Lilly had went to the NICU to be checked out when she came back there was a whole team of doctors, neurosurgeons, social workers, genetic specialist, nurses anyone you can think of was in my room. I remember not even hearig the words come out of there mouths but just seeing their facial expressions i started crying. They then sat me down and told me Lilly has been diagnosed with Aicardi syndrome, i couldnt believe what i was hearing my little baby girl looks so perfect like nothing was wrong. Surprisingly Lilly came home with us that week most of our families didnt know how to react to the diagnoses but understood that we needed their full support and help. At 1 month lilly ha a scream that could hurt your ears if you were sitting to close to her come to find out she had major acid reflux and colic her formula wasnt helping as well. We went through atleast six different kinda of formula before we finally found Enfamil Nutramigen, and she also started takin zantac for her acid reflux. After that she wa a completley different baby always happy and didnt scream as much!

We then took her to get her 2 month shots, another day that change our lives. Lilly screamed her head off when they gave her the shots i knew something was wrong. Just a few hours later i noticed lilly started making these movements with her arms thag ive never seen before they looked like she was stretching out but they were reapetitive. i was concerned and called her doctor all i got back was “its not from the shots”. Then lilly started spitting up a lot more than she was before she couldnt even keep down a bottle! I finally told my fiance while he was at work i was taking her to the emergency room to get checked out because i was worried. We arrive at the emergency room and just seconds later were being helped, we went to our local hospital which doesnt specialize in children so after giving her an iv they took us both in an ambulance to the childrens hospital, just being in that ambulance knowing something was wrong with my baby that i couldnt fix was mortifying. Once we arrived at the hospital we went to see the neurologist Dr. Libenson someone who i will and could never forget. They then hooke lilly up to an eeg on December 29th 2012 to stay for the weekend so she can be monitored. I stayed the weekend with her and on sunday she was diagnosed with having infantile spasms and they wanted to get her on a medication to try an control them right away. The doctors suggested sabril (vigabitrin) 2x a day and each week if they felt the need to higher the dose they would. Lilly came home on new years even day and slept a lot while being home that week because o the medication. The first week seemed like we may have found the answer to her infantile spasms but thats only how long it lasted, they gabe the medication a little while to see if she just needed to get used to it but that wasnt the case all it did was make her tired and in my thoughts made her spasms worse. she started having them every hour at night which would wake her up from her sleep and me of course. And during the day she would have maybe 3 clusters which at one point could last up to an hour at a time! Thankfully we had another eeg and doctors appt coming up, i just couldnt stand seeing her in this pain anymore. We talked of other options for medicationa nd decided that a medication called onfi we would try so at 3 almost 4 months she was on onfi and vigabitrin. She currently is 4 months old and seems to being doing alot better with her spasms but she still has maybe 4-5 clusters durin the day, she started sleepin through the night about a week ago (thank god!) she still has her nights where she wakes up with them but so far so good! But for now she is just out perfect little girl that everyone loves an treats just like any other baby, which they should because she is she just has special qualities that make her our Lilly :).

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