After my 20 week anatomy scan I went to a specialist in high risk pregnancies. I was tested for CMV after my daughter had an echogenic bowel. I told that CMV was nothing to worry about after my blood test cane back as a primary infection. The high risk doctor said my daughter would be just fine and I was referred back to my primary doctor who said the same thing, not knowing any different. Due to my health problems during pregnancy, such as blood clots in my lungs and having Ehlers-Danlos Syndrome, along with my daughter failing a non-stress test very early on, I believe around 25 weeks, my doctor referred my care to a different high risk clinic. At that time, I was very worried. After my first appointment they had a emergency NICU care plan set up so the NICU nurses would be in the room when my daughter was born to do assessments and take her to the NICU of needed.| After my doctor had set up the NICU team with me, I had a NICU tour at 30 weeks. The same day I had an appointment with a team of doctors to explain what to expect for my daughter- they didn’t give a very positive outcome. I had appointments with my doctor, ultrasounds, and multiple non-stress tests weekly from 30-39 weeks and I was worried every time I went in that there would be something wrong and I would be having her that day. I, was told due to her echogenic bowel, my blood clots, and her IUGR., that it would be possible Thankfully I was able to deliver her full term at 39 weeks. As soon as she was born she had lab draws, urine samples, an ultrasound of her head to check for CMV damage, and an ultrasound of her spine since she had a birthmark that is common for spinal cord abnormalities. The ultrasound of her brain came back with cysts, calcification, missing white matter, and a hemorrhage. The spinal ultrasound came back clear. They later confirmed the ultrasound findings of her brain with an MRI. The next day she had her newborn hearing tests and failed it after they did it 3 times before she was discharged at 3 days old. She had to start seeing specialists out-patient right after she was discharged from the hosptial to be able to keep her out of the NICU and come home with me. From the time she was born she has seen many specialists, Morgan has been in and out of the hospital often, and has progressively had more diagnosis added. It can be very stressful at times. I wouldn’t say it has gotten easier, it has just become our new normal in life. It isn’t a shock every-time she has a new diagnosis, gets sick, or her care team adds a new specialist.
Morgan has Congenital CMV, Nocturnal Hypoxemia- uses oxygen, mild Cerebral Palsy, Dysphagia- needs nectar/ honey thick liquids, hyper-mobile, G-tube fed, Sensory Processing Disorder, bilateral hearing loss, global delay but continues to progress in her development, and severe oral aversion. Morgan has therapy 4-5 times a week, doctors appointments on average once a week, and sees 11 specialists at American Family Children’s Hospital in Madison, WI. Everyday at home we work on her trying to eat, reading books, walking around trying to get her to be able to have more stamina during the day before getting fatigued, and playing with toys all day. With Morgan’s challenges we adapt things to help make her like as typical as we could giving her experiences like any other child would! Things may be hard for her but she constantly has a smile on her face. I will never forget the time they Morgan had just had a spinal tap at a couple months old, a CT scan, and blood draws done. Less than 5 minutes later she was being loaded in an ambulance being transferred to another hospital and she had the biggest smile on her face. I knew she was strong but at that moment it showed me just how strong my little girl was.
One of the best things I could have done for myself for my own self care is deciding to be a stay at home mom to my children so I didn’t have to juggle a very stressful job and all my children’s needs. Since I have stopped working I have made time as a family to go over to friends houses where our kids will play together, going to dinner with my husband while we have a respite care provider watch the kids to have some down time, or little things like running to the grocery store alone to have an hour alone. I have learned so much from my daughters journey. I have learned to never take anything for granted. Things as little as being able to hear a bird chirping outside is something my daughter will never be able to hear. I took for granted all the times Hunter and I could just up and leave for the day and not having a worry in the world. With Morgan, we have to have tons of equipment with us, make sure we are close to a hospital as she gets sick so often. I have become very knowledgeable for my daughter's needs and share my knowledge with others to be able to help their child. Having a child with special needs doesn’t change a person, it just opens up many more doors that were always right in front of you the whole time. Being a mother to my two amazing and perfect children in my eyes means everything to me, and no matter what challenges come up I will always push to get my children what they need and be their advocate.
Below is a timeline of Morgan’s observed symptoms, diagnosed conditions, and treatments and therapies.
hypotonic cerebral palsy
Doctors & Specialists
American Family Children's Hospital
Institution: Morgan's parent isn't sure