A Mother’s Perspective
My “mommy” years had come and gone, or so I thought. I had an 18-year-old son, a 15-year old daughter, and a successful ablation procedure – I was not supposed to be able to have any more children. It was a shock to find out I was pregnant; doctors did not think the
pregnancy would have a good outcome. All we could do was pray and trust it was in God’s hands.
At 24-weeks pregnant, I was hospitalized, due to restricted umbilical cord blood flow. This greatly limited the nutrition the baby was receiving. The doctors knew Lila (as we’d chosen to name her) couldn’t survive in the womb much longer. Two days later, Ideveloped severe pre-eclampsia. Another two days and doctors had to deliver Lila because my kidneys and liver were shutting down.
Our Lila was 12 inches long and weighed 14 ounces. We were told there was no chance of survival if she weighed less than 460 grams. Lila weighed 400 grams! She was the smallest baby ever delivered at that hospital or by our doctors; getting oxygen to her was the biggest concern. They tried to intubate Lila 8 times in the operating room with no luck. The equipment was a challenge to put into her paper-thin lungs. They helped by putting her on a breathing machine. However, this was not enough help for her. At just 7 hours old, they said Lila’s tiny body was getting tired. Her primary nurse and the respiratory therapist begged the neonatologist to try one more time to intubate Lila because they knew she couldn’t hang on much longer. The neonatologist agreed and tried two more times with no success. Lila began turning gray. The neonatologist ran to my room where I was recovering from complications from hemorrhaging after my C-section. The neonatologist said to me “we have done all we can do”. I instantly replied, “God didn’t give her to us to take her away.” At that very moment the phone she was carrying rang. The NICU was calling saying the nurse practitioner tried to intubate Lila one more time and it worked—Lila had just taken her first breath!
Lila was in the NICU for 4 months. In those 4 months Lila had 8 blood transfusions, was on a ventilator and two other breathing machines, heart monitor, numerous tests, two laser eye surgeries and was life lined to a children’s hospital in Chicago for a vitrectomy. Lila had retinopathy and the two laser eye surgeries hadn’t worked. (Retinopathy is when the blood vessels in your eyes grow out of control and if not stopped immediately they will detach your retina and cause complete blindness.) There are very few doctors in the United States that perform the eye surgery that Lila needed and Chicago was the closest one. We were in the Chicago hospital NICU for 10 days. Our tiny Lila fought so hard to stay with us. Lila is officially diagnosed as a micro-preemie with failure to thrive and oral aversion; she never learned how to suckle while in the womb and she was never able to take a bottle. In order for Lila to get the nutrition she needed, she had an NJ tube (feeding tube down her nose into her stomach). She then had surgery to place a G-tube (feeding tube in the stomach). She wasn’t able to keep any food down because of an undeveloped lower esophageal sphincter. So, she had another surgery to place a GJ tube (feeding tube in the intestines).
Lila needed very strong prescription eyeglasses in order to see. Lila has had physical therapy and occupational therapy two times a week since she left the NICU at 4 months old until starting at St. Vincent’s feeding clinic in April 2017. Lila hasn’t ever had any desire to eat
or drink anything. Prior to coming to the feeding clinic, all we could ever get Lila to do was take a couple of “nibbles” of food and that was challenging.
After being on the waiting list for the feeding clinic, we were finally able to bring Lila in for 3 weeks of intensive therapy. When Lila started the program, she was barely on the growth and development charts at the one percentile. She was 5 years old and only weighed 31 pounds. We brought Lila back to the feeding clinic in July for another 3 weeks. Lila’s most recent visit to the feeding clinic was in October for 2 weeks. We stayed at the wonderful Ronald McDonald House for the duration of these entire sessions - 53 nights total. On Lila’s last day at the feeding clinic in October, she weighed 35 pounds! She had gained 4 pounds in 6 months! (Prior to the feeding clinic, it took her 2 years to gain 4 pounds.)
We are so thankful for everyone who has helped Lila with the building blocks to eating. She is still eating pureed foods. Learning to eat is a difficult and very long and slow process. She has worked so hard and loves coming “home” to the Ronald McDonald House after therapy sessions. She plays and interacts with other kids and has the best time with the staff and volunteers. She is actually very sad to leave her friends at RMHC! Thank you to all who make this place a “home” for our family. We are very hopeful in a few years with the continuation of therapy at the St. Vincent feeding clinic (and staying at the Ronald McDonald House), Lila will be able to eat age appropriate food and her stomach will stretch enough to allow the volume of food needed to sustain herself. In her five short years, Lila has been in the hospital approximately 120 days, plus many outpatient tests and appointments in addition to the 8 weeks at the feeding clinic. She is a spunky, creative, and smart little girl and we are in awe daily at her strength and determination!
2019 - Update on Lila
The original story on Lila was written in 2017. Over the course of the past two years, Lila has made tremendous progress through her feeding therapy. She is now eating solid foods and is currently working on more difficult chewable food items. Lila is a loving child who is happy, artistic and loves life! Her parents are pleased with her progress and her growth. We can't wait to see what the future holds for this bright young lady!