Posts Tagged ‘preemie

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?

 

 

 

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
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!

24
Apr
15

Spring School Pics

I love that his school does pictures in the spring and fall. He changes so much every week!

  
We are having a beautiful spring although this weekend is a bit cold and rainy for me.

   
               

This is the new family team quilt for the Greater Cincinnati March of Dimes chapter. It made me catch my breath. Our walk is Sunday.

15
Sep
14

Happy NICU Nurses Day!

To the Ladies and Gentleman at Good Sam who took care of our little man:

Thank you, thank you, thank you from the bottom of our hearts. Today, we have a two and a half year old full of boundless energy and spirit. He loves Thomas the Tank Engine and Jake & the Neverland Pirates. He says grace when I give him a Hershey’s kiss for going on the potty. He’s just learning to say, “I wub Mommy.”

He’s still in his night-night shoes for his left clubfoot. He’s in SMO’s now for his Hypotonia. He still struggles with weight gain and reflux. However, he loves to play outside. He loves to give hugs. He BEGS to go to his grandma and great-grandma’s house, or to call Nana and Papa on the iPad. He still loves to be held as he falls asleep. He still loves his NICU puppy dog quilt. He’s really excited to be visiting “Mickey’s house” next month and to wear his Jake costume.

We wanted to drop off a card, picture, and some goodies to you today, but Mommy had an early meeting at work. We will stop in later this week.

All Our Love,

Drake’s Family

09
May
14

Flashback Friday

Today, Drake is going to the aquarium with Gammy while I try to finish the draft of my first assessment paper for school.

I walked by this photo in the hallway. I think of it every time I see a baby being fed. I was so happy and frightened to have him home.

Happy Mothers Day, preemie mamas!

20140509-094516.jpg




Drake’s 3rd Birthday

February 20th, 2015

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