Does Your Son Have L1 Syndrome?
Yes and I am a carrier. I am Tracy Felix. I have been married to Noel III for over 12 years. We have 3 kids. Our oldest, Noel IV, is 3.5. He is our L1 baby. Our middle child, Sam, is almost 2 (not L1), and our youngest, Sophia, is 2 months (we do not know if she is a carrier).
Do You Work Outside Your Home?
No. My husband does, but I chose to be a stay at home mother. I worked until Noel was born, and quit my job when he came home from NICU. He was going to be a lot of work with an NG tube, O2 and throwing up all the time. We were not given the option of nurses in our home, and there was no daycare around that would be able to care for him. I stay home now because of the other children and the cost of daycare.
When Did You Learn You Were A Carrier?
I always remember having a brother who died really young, but did not know details.
After being married and nine years of infertility we got a positive pregnancy test. For insurance reasons, my mom was tested to see if she was an L1 Carrier, even though we knew her son, my brother, had died of L1. After she was tested, I was able to be tested at a much more affordable rate, and the test came back positive. I was a carrier.
When Did Noel IV Start Showing Signs of L1?
The very first ultrasound we could see the head and knew something was wrong – his ventricles were too large. When most mom’s have an ultrasound they are excited. But, Noel III and I were scared to death. We dreaded every ultrasound because we knew it would only show worsening.
The doctors asked if we wanted to terminate pregnancy. The answer was no. We tried so long to have this baby. We already loved him. Unconditionally.
What Was Different About Preparation for an L1 Baby than a Healthy Baby?
We were as prepared as any couple could be. We got the typical things like a car seat and bed for him to sleep in, and we also talked to a social worker and got all the paperwork filled out so we could get him on SSI. With proof of his disability, it would be taken care of as soon as he entered this world. We knew [the birth and infancy] would be bad.
But, we had no way of really knowing what was coming. My parents put my brother in foster care, the clinic and hospital had never seen any other cases like this, we didn’t know anyone else that has ever dealt with this, and (as it turns out) every boy with this is different anyway.
I Heard Your Parenting Situation Got Even More Difficult than Just L1. What Happened?
While we dealing with the stress of knowing our child may possibly die, but I was waking up in the middle of the night choking on my own phlegm. Doctors kept telling me it was allergies and typical pregnancy stuffy noses. I knew it wasn’t. They finally told me my thyroid was big. Two biopsy’s and one week later, at 34 weeks pregnant, I was diagnosed with thyroid cancer. With high blood pressure and preeclamsia, Noel IV was taken at 35 weeks. My thyroid was removed a few weeks later. My L1 Baby saved my life. I have been cancer free ever since.
How Was Your NICU Stay?
Noel IV spent 54 days in the NICU. I hated that time. I hated leaving him. I hated not holding him, and when I could hold him he had all kinds of tubes and cords to deal with. I hated the ups and downs that happen daily to any baby in the NICU. I hated washing my hands for 3 minutes. I hated having to make the hard decisions for this little person. I hated the surgeries and seeing him suffer. I just wanted him home.
But, I loved the nurses. I loved how they explained things. I loved how easy they were to talk to. I loved how they were our shoulders to cry on. They taught us how to be parents. They taught us how to care for this special baby when he finally was able to come home. He came home on Sept. 17th.
What Happened When Noel IV Came Home?
I thought we were ready. I thought we knew what to do. I was excited and scared all at once. I quit my job to care for him because we knew he was going to be so much work. We were finally going to be a whole family. My family was finally all home. We had O2 machines, monitors, suction machines, ng tubes, syringes, formula and rubber bands to hold the syringes while he was eating.
For two weeks I didn’t step foot outside our house. I cried a lot. I almost gave up on him and myself. It really was a living hell. He turned blue so many times that I got used to it and was calm when it happened. He ended up back in the hospital with aspirated pneumonia two weeks after being home – 3 months old. I blamed myself for not suctioning him fast enough. We talked to the docs and agreed to put in a gtube and get a fondoplication done. Basically, doctors twisted his stomach so he couldn’t throw up.
This made things better but life was still not easy.
How Was Noel IV’s First Year of Life?
He spent the first six months of his life in and out of hospitals. We had no help. I felt so alone. The hospital staff was my support group and like family.
At What Point Did You Turn From Sick of Desperation to Confident and Hopeful?
I really became more hopeful when we got the nursing care when Noel was 2 years old. Life had been so full of up and downs. The first 2 weeks that he was home I had seriously considered giving him up for adoption because I didn’t think I could handle him. Being in the hospital every month for at least a week at a time for the first 6 months of his life really drained on me and our marriage.
Noelie getting better and then finding out that we were pregnant with another boy was heartbreaking and full of worry. Noelie was getting physical and speech therapy in our home. When he was ready to add occupational therapy, I didn’t know if I could do one more thing. I already felt like a bad mom if I didn’t get everything done that he needed.We really didn’t enjoy life because our day was so full of therapies. That’s when I broke down. That’s when we finally got the help we/he needed. That is when I finally started to have hope.
How Is He Doing Now (3-1/2 Years Old)?
Things have gotten a lot better and now he is the happiest boy I have ever met. He has proven every doctor wrong. He continues to amaze us and everyone around us. He is teaching his siblings how to be better people. He is making friends at school. He matters and He is going to change the world. He already has changed our world.
He started having seizures 1.5 years ago (around 2 years old). The first one lasted over an hour and was very scary. We now have him on seizure meds and an emergency med that we give him when he starts to have one. You can read about the last one he had and watch video (because we stayed so calm) by clicking here.
He wears a bipap mask at night with O2 running through the machine when he is sick. We have 20 hours a day of nursing care for him (I really think we should have had that right from the beginning, but I can’t get too worked up about it now). The nurses monitor him for illness and do therapies with him. They also go to school with him. Yep that’s right; our 3 year old is in school. He is really part of the group now and they fight over who gets to sing the “welcome” song to him when he gets to the class room. He has met all his goals way sooner than anyone ever imagined he would and we have increased the time he goes by an hour every week! You can read about it on my blog or clicking this link.
He really enjoys being a big brother (most of the time) and loves to laugh at everything his younger brother does.
He has over 20 doctors and therapists looking out for him yet, but he doesn’t see them nearly as much as he used to. I would have to look back in our records to remember when his last hospital stay was; and that is a very good thing! He still has to go to the doctors at least once a month, just for follow-ups, but he has been “stable” for a long time now. He is growing up and changing everyday, and we are so excited about that!