Friday, May 23, 2008

More Courage Through Sharing


For the monthly blog carnival, Finding Courage Through Sharing, the carnival host Michelle gave a topic of sharing something that you wish other people understood about your life with a child or children facing medical challenges. Well as a parent to two former premature babies who also happen to have a liver genetic disorder called Alpha-1 Antitrypsin Deficiency, I could go on and on about this subject. Nonetheless, I decided to focus on their former prematurity for this entry.

Prematurity does not end when a baby is discharged from the neonatal intensive care unit (NICU). Preemies do not catch up by the time they are 2 or 3…perhaps in size, but not in the way their brains have been shaped. Prematurity is life long. Premature babies have brains which are wired differently that full term children. This is because they have to deal with sensory input long before their brains are ready to deal with the information they are processing after birth. You may have heard about NICUs that keep the lights down low, encourage a quiet tone of voice, and do such things as placing bags of IV saline next to the babies to make it feel like they are in the womb. While I applaud these efforts, they aren’t the same as a good, old fashioned womb.

There are many sources of misinformation to contend with as a parent of two former preemies such as urban legends, media, or your neighbor down the street. Former preemies are not the same or “just like” their full term counterparts.

Both Grace and Meghan contend with the invisible scars left from prematurity. As their mommy, my job is to help them with learning coping strategies for their preemie battle scars.

Grace’s early birth brought on sensory processing disorder. While some of her sensory seeking behaviors may be very appropriate for her age group, Grace’s go further. How many six year olds do you know that actively still seek out exploring the world using their mouths? Poor dear husband, Charlie, was on the receiving end of a juicy lick to the upper arm the other day. She also is a bit like Dino from the Flintstones. When she runs up to you, she doesn’t slow on her approach. She comes on in ramming speed motion, and has knocked me over several different times. Then, there is the ever-so-fun need to approach you to say something, and then without warning, jump head first into your mother’s or father’s chin. Ouch!

Grace needs a very active sensory diet through which she can subdue her need to touch, feel, and experience things through her senses. My husband should have gotten the “husband of the year” award last year when he brought home a swing set complete with a slide. Grace needs to swing, run, jump, and play like an addict needs his/her next fix. This activity calms and soothes her brain’s needs for sensory input. Yes, I do know that this sounds like an average case of attention deficit disorder, but it is not. Grace can pay attention for hours if she wants.

Meghan’s early birth provided her with general low tone throughout her body. For many years, we were in the “watch and wait” dance to determine if Meghan had a mild case of cerebral palsy. The left side of her body actively “drooped” compared to her right side. Many, many sessions of physical therapy later, her strength has improved. Hallelujah! We were even told that the cerebral palsy issue was resolved. It is another reason for us to rejoice. In any case, I do pay homage to Grace’s contribution to Meghan’s low muscle tone and poor reflexes. Since Grace is so sensory seeking, Meghan now has lightning fast reflexes. She has to. Grace will literally bowl Meghan over otherwise.

Prematurity has consequences that can’t be erased or ignored. Many individuals do not understand this. Now that I’ve said this, I want to make it crystal clear that I do consider my children to be miracles, and I wouldn’t change them. They are my heart. They are my pride and joy. They have boundless love, and I return that to them everyday.

Yes, preemies are medical miracles, but you should not expect any preemie to come away from their early birth unscathed. Prematurity leaves battles scars. Some that can be seen, and many others that are unseen. My daughters have some physical scars, but the majority are unseen scars.

I’ll leave you with a final picture of my beauties.


Childlife said...

This was a truly amazing post, Jen. I struggle with some similar issues with Jacqui -- It can be really challenging and frustrating to help people understand that there is a medical issue with your child when they appear healthy to all other appearances.

I've learned to never make assumptions that I know what is going on with anyone -- there are just too many variables and it's so unfair to just stick people in boxes with labels just because it's convenient. You did such an amazing job of explaining the challenges facing preemies and I am once again in awe of what a wonderful advocate you are for your lovely girls. Much applause!

Michelle @ In The Life Of A Child

Tante said...

I have always felt that I understood the struggles that Grace and Meghan are going through. I remember trying to convince you that Grace was taller than the other 4 year olds, but you had a hard time accepting it :). Now as a mommy of a preemie, I understand the struggles that you go through. I am lucky because Hailey is gaining weight, but uninformed people believe that means she is alright and just small. If that were only the case, right?
Thank you for always being my strength and my voice of reason. Love ya!

Jen said...

Very eloquent, Jen, and I too appreciate what you do to dispel the myths about preemies. My boys both have the sensory issues as well; I was just nodding my head as I read your post, especially the part about how Grace crashes into people, and jumps up right into your chin. Andrew's done that more times than I care to remember. Ouch is right!

Shannon @ Gabi's World said...

Thanks for your kind words regarding my post and also for enlightening me regarding the issues that prematurity causes. I have a friend who just brought her baby home this past week from the NICU. He was born at 24 weeks. I wondered what lasting effects there would be.

~Denise~ said...

Eloquent as always Jen. This post brought tears to my eyes. Your girls are so beautiful.

Michelle said...

You put all the right words to the feelings we have as parents to preemies. It always hacks me off when a Dr. refers to my son as a "former-preemie". He will always bare the consequences of being born at 25 weeks and all that brought along with it, and as such will always be a Preemie. Even though there are not many physical scars, and the CP is so mild, you have to know what you are looking for, he will always wear unseen scars, including SPD.

I wish the media and the docs would tell families to expect these things, instead of patting themselves on the back and touting each discharge as a success. Even as the daughter of a NICU nurse, I was wholly unprepared for the challenges and diagnosis to continue long after NICU. (We are just starting down the road of SPD, and we may be facing epilepsy, as well.) I thought, whew, no brain bleed, no significant illness, aside from a biological heart defect that won't affect him until he is an old man and I am no longer around to help him, and his heart surgery. Just the usual preemie issues.

Anyway, all that to say: Thank you, well done!


Donetta said...

Hello, I have finally made it over to visit and get acquainted. Thank you so much for sharing the heart of a wonderful Mother. It is so familure what you speak of with the sensory stuff. ?Both of my children have sensory integration challenges. It drove me to tears more than once how folks just don't get it.It is frustrating when cup after cup gets spilled and floors are mopped time after time while we console the wounded ego, and do our best to keep good humor.