Photo by MissDipper
CafeMom MissDipper's son Derek was born three months early weighing just over 1 pound. She wasn't allowed to pick him up for an entire week, and he developed retinopathy (a serious condition of the eyes) and other health issues.
MissDipper, owner of the Preemie Moms group, cried regularly and felt jealous of all the mothers of full-term infants who were allowed to snuggle their babes and take them home after just a few days. Derek would be in the hospital for two months!
Here's the rest of the story I posted yesterday, with good wishes and prayers going out to Derek and all premature infants in honor of November, Prematurity Awareness Month ...
They allowed me to take Derek home when he made it to 4 lb. 9 ounces. He was off all monitors and had no oxygen. But he failed the car seat test. He was unable to keep his oxygen levels at 90 percent for an hour, the required amount to allow him to go home. Since that was the only thing keeping him in the NICU, the nurses ended up arranging for us to have a car bed that was funded by Children's Miracle Network.
Countless Health Risks
Derek had retinopathy of the eyes, which is extremely common in preemies. He had to have follow-up appointments at the hospital with the eye doctor for three months after he came home. His eyes, thankfully, corrected themselves and he did not require surgery.
Because of his prematurity, Derek automatically qualified for early intervention services. Derek's biggest hurdle was his muscle tone. Because of the long periods of time he laid in the isolette while in the NICU, his leg muscles had grown in a way that they were not allowing him to learn to crawl on time. It also affected his neck muscles and holding his head up came later than it does for most babies. He had a physical therapist that came to our home every two weeks to do exercises with him and taught us activities to help with his delay with holding his head up, rolling over, crawling, and then walking.
After a year of these services, he successfully caught up to his same-age peers and he tested out of the services. He's still monitored by early intervention to make sure that other areas do not come up with a delay, and they will test him every six months to make sure he still able to make meaningful gains.
A Deadly Cold
One of the biggest concerns for a preemie baby once they leave the hospital is respiratory syncytial virus (RSV). This is like the common cold, but for babies, and especially preemies, it can be deadly. Because Derek was born with extremely underdeveloped lungs, he qualified to receive the Synagis shot which worked at preventing him from getting RSV. Even if he did end up getting it, the Synagis would lessen the effects of the illness. Luckily Derek got through his first winter with only two ear infections.
He was not allowed in public at all and we kept many visitors away from our home until he was 9 months old. It was the only way we could protect him. Now that he's in his second season of RSV, he does not qualify for the Synagis shot. They are extremely expensive (upwards of $1600 each; he would have to receive one a month for 6 months), we elected not to get them for him as insurance would not cover them.
An additional threat to his health is the H1N1 virus. We've decided to keep him on house arrest once again this winter. We don't take him to stores, church or other public places, and when we go to the doctor's office, they put us in a room right away so as not to expose him to other sick children. We take his health very seriously. After he spent 58 days in the hospital, we are not willing to allow him to go back.
Derek today, at 14 months.
Photo by MissDipper
While Derek was in the hospital, I felt very alone. I spent hours at night on the internet looking for any and all information I could on prematurity. What I wanted most was a support group I could go to to help me with the questions I had and to offer support on the days that were bad. That was when I found CafeMom. I found the Preemie Moms group then owned by another member. I joined immediately.
There I was able to connect with other moms of preemies who knew where I was coming from. When I had questions about what they did in the same situations, these moms stepped up and answered my posts. They offered their opinions and shared their experiences. It was great to know that I was not alone. This past summer, it took over as group owner. I wanted to keep the group going because it had been a tremendous part of my survival in the first year of Derek's life.
Support and Understanding
No offense to moms of full-term babies, but there are only certain things they can relate to when it comes to moms of preemies. Only other moms of preemies can understand the pain and agony of the NICU stay and strength it takes to care for a baby who came into this world in less than desirable circumstances. They know the hurt of watching these tiny babies go through painful procedures, and they know the elation of the tiny milestones they encounter on a daily basis from breathing to learning how to eat for the first time. We offer that understanding that no other mom on this earth can provide -- of watching a miracle first-hand.
Read Part 1 of MissDipper's story.
What do you wish moms of full-term babies would understand about being the mom of a premature infant?