Archive for the 'Uncategorized' Category

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.

 

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?

 

 

 

15
Oct
15

Happy News

Since I posted sad news yesterday, I will post happy stuff today.

“Congratulations. Your graduation application has been processed, and you have officially completed your Masters degree program.”

Between officially finishing school, the awesome and amazing Cubbies, and the soon to be vacation, I can’t complain!

WOO and a heck of a lot of HOO!

Vacation app says 10 days, 18 hours until our family’s island vacation for Daddy’s big milestone birthday.

14
Oct
15

Another Preemie Family

Recently, another set of preemie parents joined the club. Last Saturday, the hubby and I went and delivered a diaper bag stocked with preemie parent goods. A thermometer. Wet Ones, non-scented for sensitive skin. Unscented disinfectant spray. Hand sanitizer. Sensitive skin wipes and preemie and newborn diapers.

It was HARD seeing the hurt in that new mama’s eyes on the day she came home from the hospital without her little girl. We had driven south to help get the extra room done that they thought they had 7 or 8 weeks left to finish. On the drive home, I asked my husband if I looked like that on my discharge day.

We gave out new parent advice, but ours wasn’t about sleeping.

“You will check her breathing all the time. It’s normal for preemie parents, we still do at 3.5.”

“Ask the NICU nurses what nipples match theirs the best. It will make feeding and weight gain a lot easier when you get home.”

“Make sure you check the low end weight on your car seat. They don’t all go low enough.”

Hubby told the dad to invest in some v-neck white t-shirts to make kangaroo care easier.

My heart aches for them. I just hope we were able to show them they are not alone. That feeling of being SO ALONE and like absolutely no one understood was only second to missing our son while he was in the hospital every night.

Luckily, that sweet baby got to go home last night. I wish them a smooth transition home.

20
Aug
15

Back to School

It’s back to school week! So far no new seizures. My little man moved up, literally to the upstairs, to the Preschool 2 class. The big goal for this year is to write his name before moving to pre-K (!) next year.

The first homework assignment this week was to fill out an about me sheet. The first few questions were the typical what is your name, what are your parent’s name. According to Drake, he wants to be a librarian and his favorite foods (that he doesn’t eat) are chicken, hamburgers and bread. I was tasked with filling out the “something special about me” section. For the first two years, I always put something about his prematurity or clubfoot and what he has overcome. This time, I wrote about his love of travel and “cations.” He is so excited to use his passport to go “to PIRATE island” in 8 weeks.

In a way, it feels like a betrayal to how awesome he is to not share that part of his story. Prematurity will always be an important part of his story, and his new teacher has been made aware of his current challenges. However, prematurity is becoming more my story and his dad’s story than his, and I am so relieved.

According to my Facebook “on this day,” 3 years ago we went back into hibernation. Drake had been out of the NICU since late March and we were on RSV isolation from March to late June because it was a bad year with numerous RSV cases. Despite his need for surgery in November, Drake still didn’t qualify for Synagis even with his doctor and us filing a formal appeal. I was lucky. My job agreed to let me work part time and mostly from home, so my husband and I were able to make it work without the loss of my entire income.

RSV isolation, especially over multiple years, is HARD. Hugs to all the families prepping to spend the winter saying “no,” using copious amounts of hand sanitizer, and praying that their child makes it through healthy and at home.

   
    
 

03
Jun
15

World Clubfoot Day

Thanks to the Ponseti method Drake can run with both soles firmly on the ground.

“Night night shoes” and doctors well trained in the method need to be more prevalent throughout the world so all CF children can run and play! 

 




Drake’s 3rd Birthday

February 20th, 2015

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