Privacy

I am in the process of making the posts on this site private. This space was about me coming to terms with my motherhood, and it’s shaky start. I am reinventing the mommypeace site, and I am working on something in the prematurity and birth defect space. However, as Drake ages I have become more conscious that he deserves privacy, and I  need to guard my family from the internet and its dangers. Thank you to anyone who ever posted something I enjoyed reading or held a conversation with me in comments here. YOU have helped me more than you can ever realize.

Hugs,

Laura @ mommypeace

Fall

I feel like this can be my favorite season again. Last year, I was worried over surgery and worried over RSV. The fall before I was worried about my pregnancy complications. It feels so weird to come and go as I please. While it was not recommended that we go on full RSV isolation again this winter, we are being cautious.

Candid Thoughts

This is a post about me. I honestly have spent most of the past two years trying not to think about me, or trying to process the fact that many people close to me wish I would just let the past go and move forward.

In some ways, I am 100 trillion times closer to the me I was in 2011. In some ways, I will never be that woman again. I have been working really hard on myself over the past couple months now that my son is in a “more” stable place.

Mental health, identity, my true feelings on things. These are not topics that I easily discuss in person.

1. I have a short fuse. If I get annoyed, the source of my annoyance is usually going to come out in a form of word vomit that despite my southern upbringing is not very ladylike.

2. Someone close to me got into the habit of telling me that I never have anything nice, positive, or loving to say. That wounded me in a way I doubt I will ever be able to express.

3. In addition to worrying over D’s weight, development, and birth, I worry that I am way too attached to him. And way too overprotective for his own good. I’m trying to work on it, but it’s very hard.

4. I am lucky. My son is strong. We have a great therapy and medical team. I have a decent support system. Why can’t I just get over it?

A FB friend recently posted about the night before her son’s birth. She and her husband didn’t sleep, excited over their new son whose birth had just been induced. Will I ever read that kind of update and just feel happy for the people? No NICU parents will ever have that memory.

Last October, I called my mom sobbing because there is so much I feel like I can’t remember of the night/morning Drake was born. She’s an RN and reminded me that some of that is probably shock or denial, but some is that the meds you areon are amnesiacs and it’s not my fault I can’t remember.

My husband is taking a developmental psychology class this semester. The second  chapter was all about genes, birth defects, and preterm deliveries. He aced the quiz, but said it was awful studying it.

I am going to a conference next month that is working with former NICU parents on family centered care practices. I hope feeling like I am giving back deals with some of this residual stuff.

5. We have NICU clinic follow-up and IFSP meetings coming up soon. We are at the cliff’s edge of “catch up by 2”. His Developmental Interventionist has taken to warning me that they will abruptly stop adjusting his age at the state level in February. I honestly just don’t know how I feel about that stuff.

6. I haven’t felt much like posting. I feel too thankful to write ranting posts. I feel this need to feel happy so I don’t really want to write like I did today about what I worry about.

7.  This is our first Halloween. Last year, it was the day after surgery. This year we are flying monkey, lion, and tin man. Let the treating begin!

8. I joined a gym. I completely wrecked my health last year. My blood pressure when I finally had a dizzy episode and went to the urgent care last December was 175/117. I was having panic attacks over hand washing. I’ve lost about 15 pounds with many still to go. As my health gets better, my husband starts talking about his desire for another child. I’m scared to get healthy because of it. As long as I medically “can’t” it’s a tabled discussion, but I want to be healthy and here for my family. I think I should consider adding a counselor to my team.

I don’t want to be disappointed in 10 years that I could’ve gotten healthy and talked to specialists and completed our family as we’d always planned. I don’t want to send another child to the NICU just to fulfill our desire for more children. I don’t know anything about adoption or my feelings or anyone else’s about it.

9. My best advice to NICU parents is get counseling. I wish I had. I wish someone close to me had told me to. Despite this post, I am in a very good place emotionally compared to last year, but I wish I hadn’t had to claw my way to the surface alone to get here.

World Prematurity Day is next month. Wouldn’t it be nice if all babies could have a healthy start?

Meeting Family

D and I are visiting family in Louisiana and Texas this week.

It feels so weird to travel on the cusp of RSV season. This time last year we had already been in strict isolation for a month because he wasn’t gaining weight and hernia surgery was looming.

Yesterday, D got to meet his only first cousin. She’s 4, and they are both only children. They played together very well despite the age difference.

It’s really hard for me to live so far away. I’ve always been close to my parents, sister & brother. Then we grew up in a small town so there are other folks I miss tons as well.

In addition to the emotional cousin meet, we had to go through some things of my granny’s. Another reminder of NICU days. She passed away 2 weeks before D was born.

Battling for Medical Procedures

I really respect our PT from Early Intervention. Drake has made huge strides and we have lots to work on, but he soaks it up like a sponge. 

Yesterday, he was tired so he kept bringing her books to read and climbing into her lap. We still made a little headway on stairs. 

We have been having a lot of trouble with him favoring his right hand for doing fine motor activities over his left hand. Apparently toddlers usually don’t choose this early. I just assumed prior to EI that it was normal preference for a stronger side. 

His physical therapist strongly suggests we try to get approval for an MRI pushed through to check things out. D only had one head ultrasound in the NICU, and she’s concerned that if anything happened to cause the generalized weakness on his left side it was missed. 

Apparently trying to get approval for an MRI for a 19/16.5 month adjusted kid is a big deal because they have to put them under general anesthesia for it. So it’s advocating time again. I’m going to try his pediatrician first, and then I’ll move to the NICU follow-up clinic Neonatologist if I don’t get anywhere with him.

To be perfectly honest, I hate the idea of him going under again, too. It took us weeks to get him back to eating properly after his hernia surgery when it sounds like most kids aren’t phased by it at all. 

I guess I’m wondering if other preemie families have had later diagnostics MRI’s done? Were you glad you did? Did it make a difference in the treatment/therapy avenues you pursued? This is my new “research paper” stuff I’m obsessing over. 

In other news, we are not on isolation this winter. It scares me, and we plan to be cautious but he’s had no respiratory issues and his medical team thinks it’s time. 

Why I Will NEVER Wear Pants Without Pockets Again!

Some blog posts are rants, some are joyful celebrations, and some just plain write themselves.

I woke up on time this morning. So I got  to clean the kitchen, pack my gym bag, play with Drake, and walk the dog without feeling crazy.

I took our two bags and Drake out to the car, and was strapping him in for our drive to work.  Since my pants didn’t have any pockets, I laid my phone on the seat next to the car seat and handed Drake the keys because I know he loves them. Since we were having such a good morning, I didn’t want it spoiled with a power struggle over car seat straps and it worked.

Usually the car keys and phone are in my pocket, and Drake is playing with “his” keys, a set of old ones I put together for him.

I wanted my round hairbrush out of my bag in the back and in my gym bag, so I grabbed the brush, shut the hatch to the CRV and as I reached for the driver door handle I heard “click.”

Oh no, oh s*&t. This is not happening.

I also usually leave my door open until the getting the 19 month old into the car act is completed.

So of course I try cajoling first. “C’mon Drake, push the other button. You’re so awesome push the other button.”  He smiles at me repeatedly pushing the lock button.

Da*&^t.

So I go knock on the neighbors door. No one home. I go and try to kick our back door in for the spare key. Nope.

I go back to the car, and plead. “You can do it. Hit more buttons. C’mon buddy!” The panic alarm starts going off. Whooo wooo wooo Whoooss a dummy. Whooos a dummy.

Then after another click the alarm turns off. Then one more click and the door opens when I pull the handle.

“YOU ARE AWESOME! But no more keys.”

Daddy’s response, “I told you giving him the car keys was a bad idea.”

Thank goodness it was only 55 degrees this morning. Yay fall.

Happy Neonatal Nurses Day

This is a day late because Drake has his first bad cold and I did not have time to finish.

My mama is a Registered Nurse. I always knew her job was special, but I never truly understood the value of nursing until I witnessed it from the NICU.

Our nurses held and rocked and fed my baby boy when I left each night. They supported me when no breast milk came, and they made sure D got donor milk as long as he could.

They made scrapbook pages and graduation certificates. They gave the first bath and taught me how.

They made me sit that first week before I could hold him even though I wanted to push.

Thank you for your expert care and kindness.

Weekend Adventures

I am super duper excited.

This weekend our family is working my art college’s booth at the Cincinnati Comic Con!

That’s right! Not only are we preemie parents we’re huge geeks.

Drake’s even got his very own mini superhero outfit:

Drake, Super Preemie

 

I know our family is going to have a blast doing something we love. This time last year we were already in RSV isolation due to early flu outbreaks.

What a difference a year can bring. 🙂

Happy Weekend!

Breaking the Weight Barrier

Yay! We had a well visit and he weighed over TWENTY POUNDS!!! (20.8), BMI 15.5, and managed to stay on his curve within the bottom 1% for his age.

Since he’s looking good, and growing well we get to try coming off high calorie infant formula and just add some other types of high calorie liquids to his diet along with his food. I am so excited. We said goodbye to bottles about two months ago, and now we get to say goodbye to formula.

I know that it probably seems like a weird milestone to be so excited over. His high calorie formula and weight gain have been at the center of all my worries and fears since he was born. I feel like a very large scary elephant has finally started to lumber out of his corner of the room.

Sterilizing gallons of water and zillions bottle parts. Giving myself second degree burns leaning over a steam bottle sterilizer at 2am. Feeling like we should buy stock in Neosure. Going to cardiology. Having metabolic tests run and then run again. Weight checks.

Done, Done, Done!

For anyone out there still struggling through failure to thrive, or failure to gain, or any other preemie-ness things, I am praying for you and thinking of you, Moms and Dads. I hope you get some unexpected milestones to celebrate, too.

We celebrated last night by taking a picnic dinner to the city skate park and watching the bigger boys do flips and turns. He was ready to push his little umbrella stroller out and join them on the course.

Buying Shoes and Well (weight) Check Week

I learned an important Mommy lesson this weekend. In my brilliance, I planned to go get D’s next set of shoes from Stride Rite on a Saturday during back to school time. What was I thinking? 

We needed this new pair for Monday’s PT session, and I knew we could drop Daddy at work and be there when the store opened. Apparently every other toddler family in Cincinnati had the same plans. 

Luckily, I was smart enough to take him to breakfast first so at least we weren’t starving. After what felt like an hour of trying to keep D from playing with the girl with that suspicious toddler hack cough, we got his feet measured. No DIsney or Sesame Street novelty shoes for us. We need the hard walking shoes. In two different sizes. His left foot is a little less than half a size smaller than his right which can be pretty typical in clubfoot. Apparently even before you are sure of your kid’s shoe size, you should call ahead and make sure a range of sizes is available. 

Four hours, two malls, 50 miles round trip, a tired angry kid, and the loss of a piece of breakfast quiche we’d picked up to take back to Daddy later we had our two pairs of shoes. Thanks to rewards coupons and BOGO it was only a little more than one pair usually costs. Yay!

Somehow I managed to schedule an appointment for every day this week. It’s also the week before students come back at work, so I have some events and big projects there, too. My two sitters, “the grandmas”, are both going to be out of town this week.

Even though the 12 month well visit went fairly well, I still can feel that anxiety rise. It annoys me. I want to fold it up and put it in winter storage and lock it there. 

Everything has actually been going really well. He’s eating more solids and trying different textures more easily. With the PT and shoe changes, we now officially have a toddler who’s not pulling his hip and ankle ligaments all out of whack (hopefully).

FInal thing – One of my cousin’s friends has a 32 weeker still in the NICU. This little guy has some big surgeries tomorrow and some big hurdles to going home still to get over. He’s 13 weeks old and giving it his best fight. I’ve been passing on some NICU parent sites to his parents in the hopes that it’ll help them when they are ready to talk and look around for that person to listen and understand. He’s having a trache, fudoplication, and g-button surgery Monday morning in the hopes that it’ll give his body the rest and help it needs to get home from the NICU. So if you have a minute at 945am CST, please spare a thought for this little boy and family.