Archive for the 'Medical' Category

15
Mar
16

Don’t Tell Me It’s “FINE”

He’ll be fine.

It’ll be fine.

My daughter only weighs 5 pounds more than him and she’s FINE.

I knew someone with clubfoot and he’s fine.

My preemie was never in isolation and she’s fine.

FINE. FINE. FINE.

Yeah, he’s mostly fine. I am not fine. This may turn out to be nothing. I hope to God and all the other powers that be that it turns out to be nothing. But if it is something? What then?

Someday, I will learn that when an acquaintance asks me how I am the truth is almost never a good idea.

“How are you today?”

“Ok.”

“Aw, it’s a pretty spring day. Why are you just OK?”

Because I’m waiting to hear if my child has a serious condition and the specialist appointment is still 3 weeks away. Because, I just don’t feel fine today.

I need to let it go. I need to stop the negative cycle so I don’t beat myself up when (hopefully) everything is fine.

The difference between me and some other moms out there? There have been 4 (5 if you count the scary pregnancy) years of moments when a ton of crap wasn’t FINE.

Because I actually like and respect this person, I went with a bit of truth. (mistake)

“Because we have to add a specialist from Children’s to Drake’s care team…again.”

Then, I had to give more of the story than I really feel like telling. I really want to be that optimistic mom, the one who is unshakable and believes the best until the worst is confirmed. Unfortunately, being positive is something I suck at.

To top it off, he only ate about 300 calories yesterday. GRRR.

Poor blog, I only feel like journal-ing when I’m “sad mad.”

 

14
Mar
16

Spring Specialists

On this day four years ago, the lid came off and little guy was able to hold his temperature. The A’s & B’s and weight gain were all that stood between him and home. We started focusing on his special foot and what he would need when he came home.

Foot stretches and PT have been part of D’s life since week 2. On Friday, we got the good news that his clubfoot correction still looks to be holding and his year off from braces didn’t seem to impact his structure. We are to keep doing the stretches and his doctor added a new one to strengthen the outer left side. We love his orthopedic surgeon, and it was awesome to hear some good news. It’s hard to believe he was only 4lbs, 10oz at his first visit with her.

At the four year old well visit, he’s taken a big hit on his weight and BMI curve which we were expecting to hear. He only gained 2.5 lbs over the past year. The good news is he did make a jump on his height curve up to the 20th percentile, so despite the trouble with weight gain he IS growing. His doc and I discussed the measures we had taken moving him to a private sitter instead of preschool for the winter to give him a break from all the sickness he had last year. His dad and I were hoping to prevent the hunger strikes. We went over a meal plan, and we need to follow up quickly if he stops eating. Last year, it felt like we were through the eating and weight gain hurdles so it’s disappointing, but at least we weren’t blindsided with it.

With very little prompting, I was able to get the referral for the other thing that I am determined not to think about until our April 5th appointment. His doc even recognized one of the authors of the research study that I brought to the appointment as someone he knew from our children’s hospital.

 

 

 

08
Mar
16

Tomorrow!

Well visit tomorrow to discuss all the things (and get shots, yuck!). The nurse called yesterday for the pre-planning phone session. I picture the RN’s at our pediatrician’s office doing paper, rock, scissors over who has to call me. “Oh that’s the mom that will actually have real, scary questions. I’m doing that one after lunch!”

I have my pediatric research data file and questions in hand. I really hope I am not over “Dr. Google-ing.” I tried to limit myself to one week buried in fear and seeking answers online. Then I stopped (until today) in an effort not to fall into what hubby calls “my cycle of negativity and panic.” Husband and I discussed our plan. We present our findings and feelings, we listen to our trusted pediatrician’s feelings, and if we aren’t comfortable with his opinion we will request a referral to the specialist at Children’s.

I’m still unsure about genetic testing. I don’t know if we should start with the genetic counselor and then go to the specialist. We’re just really lost still and we are praying that our pediatrician can steer us in the right direction without dismissing things entirely.

We’re also hoping our growth chart results are still ok. He’s been fluctuating between 28.3 and 30.6 pounds for the past year. He did top off at 31.2 at his last specialist appointment, but that just seems awfully small for a 4 year old. He was also borderline on anemia last year, so I mentioned whether we should do that check, also. And Orthopedics follow up is Friday for our first annual clubfoot check up after giving up night-night shoes!

On a positive note, HE EATS VEGGIES NOW!!!! One night we sat down at the table and he just started gobbling up peas. I was so flabbergasted that I stared, but luckily I kept my mouth shut. Now he will request peas as a snack. Preschoolers, am I right?

 

 

 

24
Feb
16

Panic and Humor

When you are a preemie parent, you think that you have that advocacy thing down. Especially when it comes to all the yucky medical stuff. I am learning that I have a long way to go to possessing expert skills.

D’s recent diagnosis raises some serious concerns about potential health issues that may follow him all the way to adulthood. Like pretty much all of the ones he’s gotten or any of our kids have, I guess. I don’t have much to go on yet. His well visit is 3/9. I need to figure out what to ask, what to push for, and when to look at other opinions. I know this is something that can’t just be ignored. The research is scary. The little bit of info I’ve found out about other pediatric patients is scary. Dr. Google is just scary.

I think I naively believed that nothing could really shake me more than his birth. I’m so used to the preemie, hypotonia, and developmental communities having massive resources out there that the void of information I am faced with is just as scary as the panic I’m trying not to have. So to diffuse the feeling of not being able to breathe, I’ll share the mistake I’m able to find some humor in right now.

Don’t forget the snacks.

On Friday, we had our annual eye appointment at the children’s hospital. These appointments always take a minimum of 2.5 hours.  I took D to brunch with his grandma and great-grandma right before our appointment. However the 1/4 of pancake, 2 bites of eggs, and 1/3 of a slice of bacon he ate didn’t last long.

About midway through our almost 4 hours in the clinic, D starts hollering, “I’m hungry! I’m HUNGRY.”

I search my giant bag of coloring books, monster trucks, and crayons for the crackers and fruit snacks I had stuffed in that morning. NOPE. Just a juice box. Apparently, all the snacks are sitting in their neat little baggies on my kitchen counter. AWESOME. I try anyway.

“Ok, buddy. Here’s a juice. That will help your empty tummy,” I coax hopefully.

‘Cause that was totally going to placate an already bored and pissed from having the burning dilation drops kid, “I am not THIRSTY, I’S HUNGRY!” He booms.

I stare at him with an “are you kidding me” kind of look on my face because really folks this 1 day from 4 years old little dude weighs a whopping 30.6 pounds. He’s never hungry or never eats when he is.

Then he starts to cry, so I pick him up to try to calm him down while still trying to offer the fruit/veggie juice. I was rewarded with a series of reaching tantrum proportions, “I’S HUNGRY”‘s. After about 5 minutes, a staff member brings me a bag of goldfish crackers, and I thank her like it is manna from heaven.

He ate five. 5 tiny fish crackers. 5! (and I was happy he ate them, but still)

And because life likes to add insult to injury, his doctor, a teaching professional expert at the #3 children’s hospital in the freaking country apologizes to me for the staff not offering the snack faster because another parent complained that it was sad he had to wait that long. OMG. My mortification over forgetting the freaking afternoon snack almost reduced the impact of the diagnosis. Honestly, I’m still kinda mortified about it.

Post-goldfish bliss

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06
Jul
15

The Not Quite Camp-out

$100 for a new tent.

$50 for sleeping bags.

$40 in hot dogs, marshmallows, drinks, and food supplies.

Not getting to go on our 4th of July (very first ever) camp out due to an ER visit?

My relief we were at home and weren’t in the woods when it happened.

Priceless.

The life of the NICU parent.

Every time, we start to think we’re getting “over it.” We spent most of the 4th at Cincinnati Children’s ER on Saturday.

They are pretty sure it was a febrile seizure. He had a suspected one once before, but it didn’t last nearly as long. We didn’t get him back to fully responsive and aware for about 3 hours.

I didn’t take pictures. I sat and I watched a blood pressure monitor and his father and I talked to him in soothing voices and we willed him to wake up. It was familiar. It was panic inducing. I was sick to my stomach the whole time.

We were in the same room they put us in when he was admitted 2 months after coming home from the NICU.

We have some new protocols to follow. The team thinks a “wait and see” approach is best for now. If it really is febrile, there is no need to put him through the neuro work up. If he has another, then we will make a new plan.

Stupid virus. Doesn’t it know summer is for fun?

17
Aug
14

Back to School, Work, Life

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

10
Apr
14

Missing Out

Drake has been sick since early Sunday. He finished a round of the pink stuff, and 4 days later the cough was back. I put in a call to his pediatrician who advised a wait and see for a few days unless his condition worsened.

It is week of the young child at his school, so his teachers have planned a lot of fun special activities for the students. They had a trike-a-thon for St. Jude with bike safety scheduled for Tuesday, a pizza and ice cream party on Wednesday, a magician for Thursday, and a teddy bear picnic Friday. Drake usually attends on Wednesday/Thursday only, but they told me we could drop by for the other events if I wanted.

Tuesday, the fever was gone, but the cough was still in scary gross stage and it was damp so I kept him home. Wednesday he was a 98.4, chipper, and asking to go for “cream” so I took him to school. At 11:45, I got a call that he was saying his ear hurt in back and his temp was back up to 102. So I picked him up and got him into the ped’s office. Yep, 1st ear infection. 😦

Still feverish and snuggly today, but doing a bit better. It does make me think of that year in isolation and all the firsts.

I know it happens once in a while to all kids though. My brother broke out in chicken pox the day of the 1st grade zoo trip. I had a stomach virus in 8th grade when I was supposed to get to travel to Dallas with my enrichment class to see Phantom of the Opera.

At least, he’s too little to know he missed much. Like the Cubbies, there’s always next year!

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Drake’s 3rd Birthday

February 20th, 2015

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