November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.
Our seventeenth profile is on a little sweet guy named Aaron.
At birth, Aaron weighed in at 940 grams. Aaron was diagnosed with BPD (bronchopulmonary dysplasia) and required mechanical ventilation for 7 weeks-both high-frequency and traditional ventilators. He then went to CPAP for 2 weeks, and finally high-flo/regular cannula for two weeks. When they were discharged, we had “standby” oxygen and a pulse oximeter at home, but never needed to provide supplemental O2.
Aaron’s first brain ultrasound showed minor bleeding, IVH grade I. This status remained stable, until the bleed resolved on its own without any visible damage. He had multiple surgeries: 1) broviac placement, NEC (an acute inflammatory disease occurring in the intestines) diagnosis requiring penrose drain placement (a surgical device placed in a wound to drain fluid) 2) exploratory laparotomy which did NOT result in ostomy (surgical procedure that creates an artificial opening for the elimination of bodily wastes) because the perforation had spontaneously & miraculously healed, 3) PDA (patent ductus artieous) ligation, 4) ROP (Retinopathy of prematurity) Stage 3 with Plus disease laser treatment, 5) Bilateral inguinal hernia repair, broviac removal.
Like most preemies, he had multiple infections, blood transfusions and more pharmaceuticals than my grandmother has had in her whole life!
There was one weekend, Easter 2008, when they nearly lost him. He was only 2 weeks old, or 27 weeks gestation. Aaron had just had his PDA ligation and his lungs were in really bad shape. If mom remembers correctly, his blood gas CO2 (carbon dioxide) levels were over 100. They say after PDA ligation, most preemies do worse before they get better. This was definitely true in Aaron’s case!
Aaron was in the NICU for 100 days before coming home. Aaron has met milestones within the “typical” range for his adjusted age. He sat up at 6 months adjusted, crawled at 9 months adjusted, began walking at 13 months adjusted.
Aaron is now 20 months old. He is still testing nearer to his adjusted age (16 months), with some skills scattered between adjusted and actual ages. Aaron receives OT, PT and Speech two times per month. He is still wobbly/clumsy when walking (after nearly 4 months of practice). The PT/OT therapists continue to work on strengthening and lengthening his muscles; balance and coordination are their primary focus.
Expressive speech is his biggest challenge currently. Aaron has very few words – maybe 10 approximations – but no clear pronunciations yet.
Feeding has not been a problem for Aaron. He will eat nearly anything I give him and has not had any allergic reactions. Sensory-wise, he seems to no big problems. Aaron has some fear/aversion (there was no way he was going underneath the parachute at Gymboree class!), but nothing outside of the typical range.
If Kori had one piece of advice for a new preemie mom, it would be this: While in the NICU, be your child’s advocate. Be present as much as possible. Act as another member of your child’s care team: Doctor, Nurse, Parent.
Once you are home, begin to work on relaxing. I was concerned about caring for my fragile baby, working the medical equipment, administering meds around the clock and growing / developing this new human being. Preemie child care can be overwhelming, but with the proper support you CAN do it.
I asked Kori to describe Aaron in one word and she said “CURIOUS.”
i read your story and i want to say he is truly a miracle. my first child was born at 25 weeks and 6 days. and my water broke at 23 and i stayed in the hospital till i had him. so many people were praying for him. When he was born he weighed two pounds even and 13.5 inches long. he was so tiny and he was on the vent for a few days then on the cpap for about 2 months and then on the nasal canula for close to two weeks before he came home. my son didn’t have to come home on anything but he also had to have the rop surgery if he didn’t doctor said theres a chance he would of went blind.and he also had a double hernia surgery. i feel for you. you went through so much more then i did. but im so thankful to know your little boy made it. he is absoulutely adorable and a miracle. my baby will be a year old in november 2010 and he still looks like his adjusted age of 8 months. but im hopeful one day he will catch up. God bless you and your family