No one can ever prepare you for the uncertain things in life. Some will bring you to your knees and others will leave you feeling so miniscule and insignificant. But then there’s those moments that even in pure chaos you become highly aware of just how beautiful and precious life really is. This is our story of finding unspeakable joy and real hope in the midst of uncertainty.
In 2013, after being on birth control with the Mirena intrauterine device for 18 months I discovered that I was EXPECTING !!! This was an absolute shock since we were definitely not planning to have another child so soon, but then again, big sister, Vienna, is another birth control baby. After our initial shock, we were elated but also fearful because we had to remove the birth control and in doing so we could potentially miscarry – which quickly turned our joy into uncertain fear and concern.
After the intrauterine device was removed, I was advised to take things easy and that there was a significant possibility of miscarrying within the days that followed the procedure. However, by the grace of God, our little girl survived and we thought that we were in the clear after that point.
However, during my 20 weeks ultrasound, mild ventriculomegaly (an enlarged ventricle) was detected on the left side of Giselle’s brain. My OB/GYN assured me that it was mild and there was nothing to be really concerned about. All of our genetic testing came back negative, so our concern quickly faded and was replaced with just the sheer joy of just welcoming the newest member of our family!
After being induced at 41+ weeks and having a relatively quick and uneventful delivery, we were excited to take Giselle home and grow together as a new family of four.
Although Giselle’s delivery was a breeze, she began to fall behind and was eventually referred to various doctors as a “precaution” when she was 6 months old.
We went to so many different specialists and started therapy multiple times a week. It was overwhelming and exhausting to manage all the information being given to me and all of the conflicting things I was hearing. For the first year of Giselle’s life we were anticipating the possibility of needing brain surgery, to possibly correct the ventriculomegaly with adding a shunt if it grew. The idea of possible brain surgery and complications from it was mortifying and it motivated us to keep going to appointments in hopes of ruling it out. After over a year of observation, we were finally discharged from our neurosurgeon’s care and surgery was not necessary- which was an amazing day to say the least!
Months of therapy rolled along but the gap between where Giselle was and “needed to be” continued to grow further apart and there was no real answer as to why. “All kids develop differently” is what I kept hearing, but we continued with precautionary early intervention therapy and I did my best to create our home into a place where I could help Giselle work on all of her therapy goals.
We continued with all of the therapy being offered to us – physical therapy..
…and in-home early intervention physical/occupational therapy.
And that’s not even including the multiple appointments we had with all of her specialists (which are listed bel0w).
Eventually we received multiple diagnoses, which all came during different times throughout her first 2 1/2 years of life. Giselle was primarily diagnosed with microcephaly, cerebral palsy & global developmental delay. Each diagnosis requires it’s own post to describe what that process was because that’s exactly what it was – a process rather than a single appointment.
It wasn’t easy to receive confirmation of things we had already suspected, but the process of assessments and mystery was finally over and now we just needed to find a way to settle in the new ‘normal’ – whatever that’s supposed to look like.
She is now 3 years old and although Giselle still measures below the 1 percentile in height and head circumference, she is active and learning everyday how to engage more and more with her environment.
Giselle is defying the odds that have been stacked against her and we are here for her to help her to be all that she can be!
I will never be an expert at being a mom, especially when it comes to balancing the multiple dynamics that are in our family of four. As a family, we have learned so many things about ourselves, each other and about the things that matter most. It hasn’t been an easy road and there are still many obstacles that Giselle still faces. I will forever be learning, growing and adjusting to life as I raise two very amazing, but different little girls. Despite Giselle’s diagnoses, she is learning, growing and is an amazing little girl that I have the honor to call my daughter!
Micro = small, Cephaly = head. It is a neurological condition which results in an underdeveloped brain, which in turn causes a smaller head in comparison to the rest of the body. Her head grows, but at a slower rate. This is believed to be responsible for her delays since she has an underdeveloped brain.
The enlargement of a brain ventricle, which is either enlarged by fluid or collapsed due to underdeveloped gray matter in the brain. In Gi’s case, it is an enlarged ventricle because it has technically collapsed due to the lack of gray matter on the left side.
According to Mayo Clinic: Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by an insult to the immature, developing brain, most often before birth. Gi has moderate spastic hemiplegia cerebral palsy (because it effects both legs/feet and there is weakness in her right hand).
Although she has not been formally diagnosed, she has a lot of issues in regards to crowds and processing various scenarios, which causes her to cry and stress out. She is usually calmed by watching her favorite music videos or will simply fall asleep as a calming mechanism when she’s stressed or over stimulated.
Global Developmental Delay
Having all of the other diagnosis, this is a very general term that sums up the results of the diagnoses. This is a general term used to indicate a significant developmental delay in all areas of infant maturation.
Neurology: Monitors overall development
Genetics: Checked Gi several times in her first year to try to detect any chromosomal anomalies, looked for physical features that indicated syndrome, monitored development to see if anything added up to a known syndrome. Everything came back negative and we may follow up on a yearly basis.
Audiologist: Checked hearing because she failed her hearing test at birth on one side. We followed up 11 times because she continued to get odd results, but nothing indicates she is deaf or hearing impaired on a structural level. Ultimately we made the decision to forgo continued testing at this point because behaviorally we see that she can hear, but it’s not worth getting “medical proof” at the expense of her comfort because these appointments are ridiculously long and uncomfortable.
Orthopedic Specialist: Monitors her feet and legs and suggested orthotics (SMO’s) to hopefully correct her feet.
Orthotist: Molded and created the orthotics Gi wears and follows up to adjust them as she grows.
Occupational Therapy: Focus is on bi-manual activity & self-feeding.
Physical Therapy: Focus is on walking with gait trainer, cruising and balance.
Speech Therapy: Focus is on identifying common objects, body parts, incorporate simple sign language, and to follow 2-step command.
Endocrinologist: Monitors hormone levels and growth pattern since Giselle is very petite. Will follow up with additional labs to make sure she is balanced and a growth-plate X-ray will be done once she’s 6 years old to estimate projected height.
Gastroenterologist: Monitors nutrition and weight gain/loss because she was currently underweight, but in recent months has gained a substantial amount of weight.
From the medical perspective, it’s important to define Giselle’s diagnoses because those diagnoses/labels are what allows doctors to create specific care plans for her and guide us on how to help her based on her condition(s). As a mom, I hate it. My daughter is more than just a diagnosis. I refuse to conform and settle myself in them.
Sure, it’s not to be compared to the traditional milestone chart, but that’s because Giselle has carved out her own path and we will help her learn and grow by meeting her where she’s at and not by trying to force her into what’s convenient. We love our little girl and if there’s one thing she has taught us it’s this: life is beautiful regardless of how it’s packaged <3