Saturday, September 19, 2009

A Look Into Prematurity

Alisa Parker, one of our CMOTC members, has written a post for us detailing some of her family's journey through the birth of premature twins. She talks about her feelings, the many great resources they have found during this journey, as well as some advice to any parents who might find themselves in a similar place.

Ava and Andersen Parker

I have been asked by the Columbus Mother of Twins Club to write a post on prematurity and how it has shaped my family's life. I often say it happened to us, but it does not define us. Many of you know Andersen and Ava's story but the members of the twins club do not and MANY of these twin moms have experienced prematurity and bed rest or will experience it. I can only speak for our family and over the course of four years, I have met many mother's whose stories are similar yet different but we all share one thing in common.... The "P" word. I hope my tips help other's out there and welcome anyone to approach me at anytime.

I was having the BEST pregnancy. I had no morning sickness, I had no discomfort, I had no worries. The first sign of trouble came at my 21 week doctors appt. My cervix was measuring a bit short so I was put on modified home bed rest and instructed to come back in 2 wks. I took a leave of absence from work which ultimately became a permanent one but while I was on home bed rest, I realized it wasn't that unbearable at all. It was kinda great... my hubby waited on me and all I had to do was say "Nah, can't do that... doctor said to stay off my feet". It can actually be a good thing!!!

Although I still had no discomfort, things took a drastic turn when I showed up at the doctor's after those two weeks had lapsed. After examination at 23 weeks, I was told I was 3cm dilated and 90% effaced. I was in active PRE-TERM labor. There was no going back home, there was not an overnight bag with me, baby showers had not been thrown, the nursery was still a spare bedroom and my twins were on their way into this world.
I am finding that this post is quickly becoming a scary one and that is not the message I want to convey to expectant mothers of twins or singleton babies for that matter. I will skip many details, but want to tell you that I was able to hold onto the twins for three more crucial weeks on hospital bed rest. They were born Sept. 26th, 2005 at just 26 weeks. Andersen was born first weighing 2lbs, 13 inches long...
Ava came next via emergency c-section weighing 1 lb 13oz and measured 13 inches long...

These are my suggestions to expectant mothers:
Do not be afraid to ask your doctors questions. Do not be shy or feel like there might not be enough time at your appt. and you can ask next time. They have one of the most important job roles in this bring human life into this world.. you have the RIGHT to ask questions. You know your body best ... be educated about the signs of pre-term labor.

The March of Dimes website is a great resource to visit to learn about prematurity & learn about the signs of pre-term labor. Did you know that any baby born before 37 weeks is considered premature? One out of every eight babies are actually born premature. Obviously there are variations in regards to what the health of a 37 weeker looks like compared to that of a 26 weeker. Regardless of when they are born, be prepared for anything. You may feel paralyzed with fear if your baby has to go to the special care nursery or what they call the NICU, Neonatal Intensive Care Unit. It is actually a GREAT place to be ... VERY safe, very sterile and your baby has the ultimate setting to thrive and grow. There are many angel nurses there to take care of your baby and some babies call it home for a few days, some a few weeks and other's a few months. A standing term you can always tell your child later in life, is that they are a NICU graduate!!! What an over achiever from the very beginning. :)

If you have a preemie, they are often referred to by their adjusted age. It's a term health care providers use when evaluating growth and development of your baby. It is based on your child's actual due date, not when he or she actually came into this world. It gives them a fair chance when being evaluated for developmental milestones.

When it comes to protecting your little one after they are discharged from the hospital, I would recommend staying in (really depending on how early they were). That seems to be the best way to protect them from germy places. We opted to just go out to doctor's appts and would have people visit who were primarily family and most importantly, not "cold like, not flu like, not sore throat like, not sneeze like, etc." You get the idea! You have to remember, my kids were born right at the beginning of RSV season and although they made it through their first year without catching it, they did get it the next year. The first year they received synagis shots to protect them. This was set up through their NICU doctor at Children's hospital (BPD Clinic). They will set it up for you at the hospital or your pediatrician will. We also were fortunate to have a nurse come out to the house to do this for us so that again, we didn't have to take them out. I want to say this was through Children's as well, called home health care or Homereach. I can't say enough about Homereach (an Ohio Health program). They delivered us our oxygen tanks that the kids needed and heart monitors. They are excellent with teaching you how to operate equipment if you need such things and just overall customer service. They are truly there to help! I would like to dispense some fear about RSV and let you know that most kids get it by the time they are two years old. Just pay attention to breathing and if your child seems to be wheezing, take them to the docs and make sure their lungs are okay. Many preemies lungs are fragile and the good news is that they get stronger each and every year!

Lastly... I need to wrap this up... a few other resources I would use, would be the social workers at the hospital. They can hook you up with Help Me Grow, an Ohio program that strives to help children succeed developmentally. Ava and Andersen received in home services such as OT and PT for several months and then eventually became enrolled in a center based program outside the home that helped tremendously with socialization! They received OT and PT there as well. Help me grow was on top of everything and will follow up with you closely so that your children will get all the intervention they need to catch up. They will follow your children until the age of three. Even if you don't have a preemie and had your child at term or close to term, you can contact them if you suspect a delay at 1-800-755 Grow and fill out a referral form on their website (hyperlinked above).

Almost done.. promise! My daughter has a very complicated course in regards to her eyesight and we learned about an Ohio program that's within the Ohio Dept. of Health called BCMH or Bureau of Children with Medical Handicaps. Her diagnoses (ROP - retinopothy of prematurity) qualifies her to receive support from this program, specifically when it comes to our private insurance not picking up the bill for treating her conditions. I highly recommend it.

My kids will celebrate their 4th Birthday in just one week! They have come a LONG way since their very fragile start.
We would not be where we are today if it had not been for family, friends, the March of Dimes, Dr. MaryLou McGregor at Children's hospital, and countless other doctors and hospitals that had our miracles best interest at heart.

Do not let fear overtake you. Preemies grow up, they thrive, and although there may be delays along the way... they are manageable.

I cannot believe the support out there to help these young lives get to where they need to be. Utilize the programs, ask questions, get your family to babysit so you and your significant other can go out to eat, still take countless pictures in the NICU...
And reach out to your friends.. they want to help! You can join a NICU support group that your hospital might offer, join a preemie yahoo group or chronicle your child's journey by starting your very own blog!

When RSV season is over, join a spring March for Babies walk and honor your children or child. You can walk in their honor or their memory, whatever the case may be. It really is a great way to give back to an organization that has done so much for prematurity, not to mention therapeutic for one's self.

DO NOT blame yourself and realize you cannot control mother nature as much as you'd like to!

Did you know that Stevie Wonder, Albert Einstein and Mark Twain were preemies? The sky is truly the limit!!!

Here's to my soon to be four year old's!!! They would love to play so feel free to look us up anytime. I hope to make it to the farm in October for the harvest party! They are known in the blogging world as "Fully Charged Double A's." Thank you for allowing me to share our story!

Here's what prematurity looks like, four years later!
I want to extend my support to a dear online fellow blogger, Kelly Butler. I started following her some time ago because of her sweet daughter Brooklyn, who has Rett Syndrome. Her smile is so contagious, I couldn't quit checking in on her. Kelly just had a baby boy named Boston (so cute!), and she had some complications with his growth in utero. He was born at 30 wks and weighed 2lbs, 3oz. She just started a second blog, chronicling her NICU journey with Boston. You can follow it here.

This post is also on Alisa's blog. There you will also find more on Ava and Andersen's extraordinary journey. Including these posts which detail their birth and early diagnosis.


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