30
Mar
16

Just One of Life’s (Embarrassing) Moments

My husband left yesterday morning for a business trip. He’ll be back on Friday. The night before, he decided that he needed a couple extra polo shirts and some undershirts and socks. We headed to Kohl’s.

D had skipped his nap, so he fell asleep in the car seat as soon as he was strapped in. We shopped and he woke up about the time we were ready to check out. A quick trip through the toy aisle so he could just “see” and we were ready to go.

D’s in a “helper” stage and wants to be involved in everything. Kohl’s has these really deep shopping carts with a kiddie seat. We had thrown the socks and undershirts in the bottom, and lay the shirts across the top. I bypassed the polo shirts laying on the top of the cart to get the undershirt package that was laying in the bottom. Right when I was coming up with the shirts. Drake yanked up on the polos. So when you fish, the hook catches the fish. I think I know what that feels like now.

That metal coat hanger went up my left nostril and stuck there because the end was sharp. I immediately tried to carefully remove it,, streaming blood, and as visions of going to the ER with a hanger on my face danced in my mind. Luckily, it came free. I’m streaming blood from my nose trying not to get it anywhere and trying not to freak out. Drake is screaming, scared and my husband is telling me to head to the bathroom.

The lady behind me hands me a wad of tissues to hold on my face as I trek 10 miles from the registers to the back of the store where the restroom is located. A bit of pressure, a good washing, and a cold rag later and I was good to go.

I came out to my husband waiting for me because he had no way to pay for the goods. I had his wallet and phone in my purse since he had tried on some clothes. The second trip through the register went much better.

I called my mom (she’s a RN) and asked what was safe to clean and treat the inside of my nose. She gave me some instructions and finished with the parting advice to never underestimate how quickly a little kid can execute a take down.

One of my friends said she hoped I wouldn’t be offended if she got him a fishing pole next year for his birthday. He’s already got one, and I guess all that practice casting the little weighted fish has paid off.

 

 

22
Mar
16

Peace

I have always loved Holy Week. I grew up in a liturgical church that revolved around the seasons of the church calendar. I had dreams of these things for my new baby, but we all know the NICU brings changes and how I approach religion changed a lot.

I couldn’t be the “bring my kid to all the things” parent I thought I would be from the get go. I had anxiety about taking him around a bunch of people once we were allowed to. Things just didn’t work out. Now that we have been in the habit of watching online and not being part of a community. It is hard to go. It doesn’t help that the Mr. and I have conflicting viewpoints on the style of worship we prefer.

I have a long way to go in teaching my son to know that kind of peace you have when you know there is always someone there watching out for you and loving you no matter what. Someone who is stronger than you who and who knows your weaknesses and knows your needs before you can think them or even put them down on paper. I want to remember what it felt like when I believed I could turn all of my problems over like blowing dandelion fluff into the wind.

I use this blog to vent worry and frustration so that I can come to terms with things and feel more at peace. When I am comfortable in my own skin and with what’s going on around me, I can create that safe haven for my family that church always was for me growing up. Right now, I am just so consumed with worry. I have just an instinctive bad feeling that something is wrong, and it scares me that either I am projecting my anxiety or a mom just knows.

May you have a reflective Holy Week and a Happy Easter.

 

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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21
Feb
16

Four-ever

Mickey Cake!31fd6b90-cb8a-44f9-99df-b6f51e53cf0eHappy 4th birthday, buddy!

It was so much fun to celebrate our kid this weekend.

We had our first winter public birthday party with his friends at an indoor inflatables place.

The King is Here!

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I am sorry for the lack of updates. We had a big specialist appointment looming and I just didn’t have the gumption. Now I have a diagnosis with more questions than answers, and I’d rather just celebrate my handsome guy.

Also, this is the 4th anniversary of going from vent to CPAP and getting to touch his hand! So glad his nurse made me start a calendar journal.

 

 

 

 




Drake’s 3rd Birthday

February 20th, 2015

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