Posts Tagged ‘birth defects

25
Apr
14

Marching for Babies!

Sunday, the Cincinnati/NKY March for Babies event will be held starting at Paul Brown stadium and ending at Sawyer Point. The walk starts at 9am.

My family will be there, and we will be in our team shirts which just arrived today!

Last night, Drake and I went to community day and pre registration. We found out our team shirt from last year will be part of the area’s new family team quilt a volunteer is creating!

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07
Mar
13

The Other Side of the Coin

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward,  and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition,  a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

Russell’s Feet – A Parent blog

No Surgery for Clubfoot Parent Yahoo Group  To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)

 

4th Cast Mother's Day 2012, 2.5 months old/12 days adjusted

4th Cast Mother’s Day 2012, 2.5 months old/12 days adjusted

10
Jun
12

Congenital Birth Defects

I’m still dealing with a lot of anger. It makes me feel weak. I feel weak as a mom and weak in my faith. I feel ashamed because I’ve started looking into this huge community of moms of premature infants who have had to endure so much more than my son and I have.

I take it out on my husband. I have flashbacks to the weekend my son was born and review what I did and how I felt to see if there is any point I could have made a different choice for a different outcome.

Rationally, I know there’s probably nothing I could have done to prevent my son’s prematurity. Just as there’s nothing I could do to prevent the shortened tendons in his left foot causing it to twist in. Of all the things that could be wrong, this is fixable and probably without surgery.

But I’m still angry, and I mourn. I hate that everyone who sees my “newborn sized” baby in a cast think he was injured in some way. I hate the pity when I explain to them why he’s actually wearing it. I worry about his future struggles with 23 hour bracing for the next several months and 12+ hours of bracing until he’s 4.

I know I should be thankful, but I’m still just too mad.

 

 




Drake’s 3rd Birthday

February 20th, 2015

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