From the beginning of her entrance into the world, Analeigh’s journey was a rough start. Throughout pregnancy everything was thought to be on track and that she would be a healthy baby. A few days before she was born, I noticed decreased fetal movement and even went to see a cardiologist, but all seemed to be good. Due to decreased heart rate it was determined that it would be best to have a cesarean done. Upon her arrival Analeigh cried for just a split second before they had to start CPR and intubate her. From there it seemed like a whirlwind of nothing but bad news and a downward spiral of unfortunate events. It was confirmed that she had a heart defect and would need to be transferred to Medical City Dallas. While I stayed hospitalized Analeigh was transferred that same night. The little interaction I was able to have with my first-born child was heartbreaking. Analeigh’s heart surgery took place when she was 5 days old which is when I was first able to hold her. Although this was not the typical scenario we had hoped for, holding her before she was wheeled out for surgery brought so much peace to our family.
Analeigh had coarctation of the aorta, so her heart was working extra hard to get blood to the rest of her body. The heart surgery was a success! After that they attempted to wean and extubate her from the ventilator but were unsuccessful. They realized that she had a diaphragmatic hernia which she again had to undergo surgery to repair. Once repaired they again tried to wean and extubate, and again she just was not strong enough. At this point we were informed that they would try to repair again from a different side and if she were to fail extubation again then we would need to consider a trach. She went in for the final repair and they also completed a Nissen fundoplication for her reflux. We all kept our fingers crossed and prayed that she would successfully be able to be weaned off, but she quickly let us know she was not ready. Analeigh underwent her final surgery for her trach when she was about 3 months old. Once her surgery was completed and we were able to go back and see her we were finally able to see just what a beauty she was. For so long her face was covered in tape and tubes coming from her mouth and nose but now we could see exactly what she looked like.
From there the road to recovery started. We finally were able to bring our sweet Analeigh home when she was about 6 months old. Analeigh was diagnosed with Kabuki syndrome when she was about 3 years old but in that time frame she completed so much and was even decannulated. Analeigh is now 9 years old and is still g-tube dependent and non-verbal but can get around in her wheelchair and walker. We are blessed that she is overall a stable and healthy kiddo that is often stubborn but overall full of smiles and laughter.
What amazes me about Analeigh is the fight she has in her which is why I say she is always so stubborn. It definitely works out in her favor. While she follows instructions very well and has a good understanding of just about everything, there are lots of things her body is not capable of which I think causes frustration. We along with family and therapists help her try to be as independent as possible but she will always need a little assistance. She has learned some signs, but communication has also been a big hurdle for her as well.
Although Analeigh is developmentally delayed she enjoys somethings most children her age do, most of all her tablet and music. Upbeat and salsa music brings her so much excitement. Analeigh also has a 17-month-old brother who she loves to play with, and she also knows when and how to let him know she’s had enough. She loves rough play at times but will be quick to let him know when she wants her alone time.
Being a parent of a special needs child is a daily challenge. Before Analeigh, I was young and didn’t really know what I wanted to do in life. After she was born, I resigned from my job and then stayed home for a while with her. Later I decided to go back to school to become a Respiratory Therapist. I became passionate about wanting to help parents who were going through hard times with their child. I was a young mom scared of what was to come. How would I care for my child with special needs and what was life going to be like for us? A lot of other parents think about this as well. Making sure your child is healthy, keeping up with doctors’ appointments, having the medicine needed, and all equipment and supplies are available, all while juggling a full-time job; it’s a lot of work!
I hope by sharing my story with other parents I can help ease some of the concern. Today Analeigh attends schools, has her daily therapies, and just enjoys time with her family and friends. She has the best laugh and most contagious smile. She is a constant reminder to us to enjoy the little things in life and to never take time with our children for granted.