Born at 28 Weeks -- Preemie Story Part 2
November 17, 2009 at 1:48 PM by Cafe Cynthia - Comments (14)
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 ...
Going Home
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.
Preemie Moms
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.
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What do you wish moms of full-term babies would understand about being the mom of a premature infant?
Related posts:
How Does Prematurity Affect Developmental Skills?
FILED UNDER: childbirth, health, milestones
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Derek is a beautiful little boy! I agree with Peajewel, what an amazing story. What a strong family bond you have and will always have. Derek is a miracle.
An amazing story. So glad to hear Derek is doing well. I also have a preemie. Brian was born at 30 weeks, weighing 2 lbs, 13 oz, due to pre-eclampsia and HELPP. He spent 8 weeks in the NICU, had his ups and downs, but he's now 18 months and doing wonderfully.
IT TRULY ISA WODERFUL STORY :) IM SO SORRY , WHOEVER , TAHT YOU HAD TO GO TRU ALL DAT :( IF READING ABOUT IT IS HEARTBREAKING , I CANNOT IMAGINE GOING THROUGHT IT !
BRANDON , MY SON , WAS BORN 1MONTH PREMATURE WIEGHING 6 PONUNDS 2 0UNCES , LUCKY FOR US, WE WERE ABLE TO BRING HIM HOME WITH US , SINCE THEY FOUND HIM TO BE REALLY HEALTHY :)
I ENCOUNTER AN ILLNESS CALLED CHOLESTASIS (WHICH IS WHT CAUSED FOR MY LABOR TO BE INDUCED ) IT WAS REALY HORRIBLE , I CANT REALLY THINK BACK ABOUT MY PREGNANCY W/O REMEMBERING HOW HARD AN DIFFICULT WAS TO SUFFERED FROM THAT , LET ALONE THE FACT THAT I COULDN STOP WORRYING ABOUT MY BABY'S WELLBEING !
IT REALLY IS HARD TO HEAR THAT "YOUR BABY IS SAFER BEING ON THE OUTSIDE " CUZ THATS SOMETHING YOU NEVER REALLY THINK ABOUT ONCE YOU'RE PREGNANT !
THANKS GOD YOUR SON IS BETTER NOW , AD HE WILL BE GETTING BETTER , ALTHOUGHT YU AND YOUR DH AND YOUR BABY AS WELL , GOT OFF TO A HARD START , GOD IS WATCHING OVER YOUR FAMILY :)
THANKS FOR SHARING YOUR STORY WITH US AND GOD BLESS YOU !
I ALSO LOVE CAFEMOM AND IM GLAD I FOUNDIT CUZ I WANTED TO BE ABLE T BENT OFF AND TALK ABOUT THE JOYS OFMOMMYHOOD AND KNOW THAT I'D BE UNDERSTOOD !
i went into labor wiht my third at 26 weeks but lucky i stoped and we were on bed rest till 35 weeks and she was very healthy small but healthy
Touching Story ! Glad to hear that your little one is doing very well . Good luck in the future .
Very true. Moms that go through that really know. My son was 6 wks early. What I realized is no matter how early a baby is, moms still go through the same thing. I spent the whole three weeks at the NICU besides going home and sleeping for 5 hours because they wanted me to at least get some sleep. Then when it was closer for him to come home I spent a whole week there, except to go home and shower. Really, I can never say thank you enough to the NICU staff that were just so wonderful! Your son is such a doll!! GOd bless you and your family.
it is SOO hard going home without your baby. I got discharged and when right to NICU.
My son, PJ was born 15 years ago at 24 weeks weighing only 1.5 pounds. So much of what you went through is similar to what we went through so many years ago. PJ's skin was see through so he appeared to be black and is now a blonde haired fair skinned young man - he used to think that we had him bleached to match us! He was in the NICU for an agonizing 97 days. He came home in time for Mother's Day and returned to the hospital for Father's Day with pneumonia. We have three older girls one that was in school and had come home with a cold which he caught. He had been on the nasal canula (the tube that adults have for additional oxygen) and from moving had actually worn away the middle of his nose so he had one giant nostril. When I had seen him the nurses had said not to worry that it grows back - it was very hard to believe all of the things that they had told you would be fine but they were right. He had a capillary hemangeoma (which is a giant blood blister) on his back that they had said would grow to be the size of a golf ball by the time he was 3 and then begin to dissolve and be gone by the time he entered school. All true. He now has a very small flesh colored birth mark where his hemangeoma was. He came home with a monitor that went off when he wasn't breathing that came with us everywhere for months.
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What an amazing story! What a true blessing your little one is! Thanks for sharing such a great story with everyone!
Peajewel Nov. 17, 2009 at 2:16 PM