Posts Tagged ‘hope

03
May
15

Parents of Preemies Day 2015

This isn’t where you expected to be. You may have dreamed of celebrating Mother’s Day, Father’s Day, Grandparent’s Day. Here you are and it’s Parents of Preemies Day.

What’s this about? Am I celebrating the fact that my child came early and needed weeks or months of hospital care or possibly didn’t get to come home with me?

Nope, Mama or Daddy. It’s about celebrating you. You had to experience every fear of every parent from the first moment of your child’s birth. You are strong and you did what you had to do. You may not feel perfect, but that doesn’t matter.

You can find out more about Parents of Preemies day here:
http://parentsofpreemiesday.org

Happy Parents of Preemies Day. You are awesome.

cuddle PICC dad picking up

Today, I’m not celebrating with my guys because my new school term just started, and I was supposed to take a test on Friday that I have to finish today. But I hope everyone else can enjoy a beautiful Spring day!

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06
Aug
12

Brace Check #2

Last week, Drake had his follow up on his clubfoot at the halfway point of his 23hour wear portion of his treatment. Everything checked out well, and it was such a relief.

Any Ponseti treatment trained specialist is going to tell you that clubfoot treatment is 5% medical/95% parents. You have to be committed to the bracing protocol 100% or your child will relapse and it will be necessary to go through the casting phase all over again. There is always a chance of relapse, but the probability drops drastically if you follow proper bracing protocol.

The best part of my day is watching Drake kick his happy feet in his tub during his bath or smile and coo because his comfortable during his tummy time play. It is NOT easy to put his shoes and bar back on as he fights me with every fiber of his being, wailing at the top of his lungs, with his pouty bottom lip poked out.  There have been nights I sobbed about it afterwards. Nights I rocked him to sleep because he’d wake himself up knocking into his crib and wake up screeching in fear.

A 6 month old doesn’t understand why his mother is doing something he hates. He doesn’t know why his feet have to be locked into position 23 hours a day. I explain it to him, and I strap him in because I know that when he is running pain free at 5, 10, 20 years old that will be all I need to erase the memories of making my baby miserable away.

It is HOPE for the FUTURE. That’s what makes it possible to do this everyday.

13
Jun
12

The Journey

Now our real journey begins. Drake was fitted for his Mitchell shoes with Ponseti bar brace today. This has been the fussiest I have ever seen my quiet preemie.

I knew that the coming years of getting this corrected would probably be a bit of a struggle. I’m so thankful that this is a correctable issue, but I’m so sad that it’s one Drake will be fighting for the next 5 years.

So far today, Mommy has

1. Inserted the bar backwards and cried as my baby cried

2. Put the shoes on the wrong feet

3. Felt my son snuggle up to me for comfort despite all I’ve put him through

And number 3. That’s the reason all of this is possible.

The Yahoo group nosurgery4clubfoot has been a real comfort to me today.

Please God give my husband and I the strength to do this for our son. Help us to remain vigilante and compliant to the best care plan for him.

We won’t talk about the offhand comment about his brace making him look like Forrest Gump. It made my heart hurt for him, and it made me so, so glad that we will hopefully be through this before he has to be too much in the world without Mommy & Daddy.

 

07
May
12

NICU “Roller Coaster”

I saw a comment on a blog post today (life with jack, I really admire this mommy and her son, I can’t imagine that journey) that really made me pause, and reflect.

“If the NICU is like a roller coaster ride, then I’m never going to an amusement park again.”

Like a roller coaster, there are peaks and valleys and grand adrenaline rushes and moments of stomach dropping fear. The difference? You know that eventually that ride is going to end, and you are going to walk away unharmed.

When you’re the parent of a baby journeying through the NICU, you don’t have this knowledge. You have no idea when this horror ride is going to stop and let your family off.

Hope. That’s the light at the end of the tunnel that is the NICU. The hope that one day your child will fight through the medical issues surrounding them and you will be able to take them home. If you’re very lucky, you don’t end up with further battles to fight.

Drake is undergoing treatment for clubfoot. He was diagnosed as moderate and his orthopedic doctor is using the Ponseti method of casting and bracing for correction. My son should be lucky enough to have both feet planted firmly on the ground by the time he is 4 if all goes well. It’s hard to watch my baby be put in cast after tiny cast, but I know in my heart that things could be so much worse.

I was there many hours a day for the 34 days my son was in NICU. I know our “roller coaster” was shorter and less painful than most. I thank God for it, but I won’t forget the beeping of his tiny neighbors. I won’t forget the hours of Kangaroo Care when his heart or breath would stop and nurses would rush over to look at him. No amusement park ride has ever been so horrifying.




Drake’s 3rd Birthday

February 20th, 2015

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