Archive for October, 2013

30
Oct
13

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.

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28
Oct
13

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?

17
Oct
13

Home Sweet Home

D and I are back home from our visit to Nana and Papa.

First Tex Mex!

First Tex Mex!

D is an AMAZING travel buddy. His eating was a bit off, but other than that he was sunny and awesome.

It wouldn't be Texas without a steer at the truck stop.

It wouldn’t be Texas without a steer at the truck stop.

My 4 year old niece is an only child also, and I had wondered how they would get along, but she was really amazing with him. He doesn’t always have “sharing” down but she was as patient as her 4 year old self could manage to be.

Pine Straw where Mommy grew up in LA.

Pine Straw where Mommy grew up in LA.

We created a “Yoda Dog” at Build A Bear and ate Strawberry cheesecake at the Cheesecake Bistro at Louisiana Boardwalk.

Yoda Dog Lives!

Yoda Dog Lives!

Yum strawberries!

Yum strawberries!

I got in a good 3 hour long car ride with my little sister. I miss living near her so much, and we walked her dog at the “usual” truck stop on the way back to Las Colinas.

Sunset

Sunset

We had a fun day at the Dallas Aquarium where I picked up a super cute “bubble pop” counting book with our favorite “10 little monkeys” story.

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Climbing on Nana and Papa’s porch.

The 15th was our travel day and my birthday. My husband had a card from him and one from Drake as well as an awesome boquet and chocolates waiting for me. Love my sweet fellas!

October 15th was also pregnancy and infant loss awareness day. My heart goes out to all mothers and fathers and their families that have experienced miscarriage or loss.

 

11
Oct
13

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.

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01
Oct
13

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. 




Drake’s 3rd Birthday

February 20th, 2015

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