Posts Tagged ‘nicu

05
Nov
13

Healthy Holidays

It’s that time of year again! I’m thinking of and wishing well all preemie families who have started their lockdowns. It is so necessary and so unfun. You are doing something wonderful for your kid(s) though!

I think the hardest part of our two isolation seasons was the reactions of loved ones who just didn’t understand. Wanting to share our new family with the world and being unable to was rough, and it adds insult to injury when people closest to you treat you like an overprotective crazy person.

Hand to Hold posted an awesome article today about the dangers of RSV and cold and flu for preemie’s immature immune systems and lungs. I posted a sign on our front door, but the free printable they include looks so professional it may keep you from having to endure the “why do I have to wash my hands” talk. ūüôā

http://handtohold.org/resources/helpful-articles/5-myths-rsv/

We had a windy, rainy Halloween. Luckily, the weather halted just long enough for the wizard (daddy), lion (mommy), and flying monkey (drake) to walk around to the neighbors. ¬†With two years of being off the grid so to speak, I didn’t really know my neighbors. Halloween taught me just how kind many of them are as they watched at doors and rushed down driveways with candy so that kids could get some trick or treating in and avoid the severe weather.

We had an impromptu pizza and cupcake party at our house with gammy, great granny, a couple friends and us. Then gammy let D stay all night so we could go to a concert. It was an awesome night. Last year, we were changing belly dressings and trying to function on no sleep.

I’ll put some costume pics up soon!

 

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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?

15
Sep
13

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.

18
Mar
13

May the Road Rise to Meet You…

Slainte!

One year ago, my husband and I walked into the NICU at 8 am on Saturday morning, March 17. We had our cooler bag with bottles of my pumped milk from the night before and a “My 1st St. Patrick’s Day” bib. When we arrived at Drake’s pod, we were greeted by our favorite nurse, Ms. C. There was a surprise for us as he had just finished his first full feeding from a bottle!. She gave us the bottle with a handwritten certificate and a green tuft sprouting from the top. We found out at rounds that we could be going home in 2 to 3 weeks if he took to bottle feeding well and there were no more A&B’s or drops in weight gain. This was the first hope we had that Drake might actually be home before Easter.

“May God hold you in the palm of His hand.”

Yesterday, we actually got out of the house and went to our very good friends’ home for Corned Beef & Cabbage and some Rocksmith. D’s very first St. Patrick’s Day party!

 

 

14
Mar
13

Alone No More

This week I am so thankful for a brave mama in my area who decided to start up a local support group.

I was usually at the NICU during the day, so I didn’t run into many other parents. I definitely had my moments of feeling extremely lost the past year as none of our friends or family had ever had a NICU experience.

That’s something the preemie internet community definitely provides as we share our stories and support each other, but it’s nice to know there’s someone close by that you could invite to coffee if you wanted to.

That’s all I’m going to say about that for now as it’s a small, private group. Anyone in the Cincinnati area is welcome to join who has experienced a NICU stay with their child though so feel free to message me if you’d like to be pointed in that direction.

I had two reminders on facebook today of WHY we have endured RSV isolation for most of his first year. My bout with Influenza A was a scary reminder, too, but these images make my heart stop and are keeping me up tonight.

One was a post on my college band alumni page about a couple who graduated a bit after me that lost their son at only 13 months old after a brief illness. The second was of one of my college roommates full-term infant son with a breathing treatment mask on due to RSV.

So even though the long, cold winter is drawing to a close and spring can be felt in the air. I will not be lazy or forget exactly WHY we are doing what we do. It’s so tempting to go ahead and take him with us on errands, but we have worked so hard to be healthy. He has worked too hard.

And my heart just aches for these families dealing with loss and illness….

05
Mar
13

Preemie Milestones

One year ago today, we were on the 14th day of Drake’s NICU stay. We found out that he would have his PICC line removed after morning rounds.

One less wire, yay!

Of course, I also remember that this led to some slow weight gain, concerns about metabolic disorders, and 26 calorie/ounce formula (which he’s still on).

But March 5, 2012 was a day of celebration. It wasn’t the first preemie milestone we celebrated or the last, but it was one more footstep closer to HOME.

 

cuddle PICC dad picking up

 

This was earlier than March 5th, but it showcases the PICC cuddle as Daddy goes to lift him for my first Kangaroo care with us all present. He was 6 days old.

18
Feb
13

A New Preemie Family

As I gave advice to my friend on her brother and his wife’s needs over the phone Sunday afternoon, I was taken back to that place where nothing from anyone was a comfort or help.

The scariest moment. When 10 people rushed into a triage room with me, and looked at some monitors and made me get in a fetal position on my left side ¬†and put an oxygen mask on me. Hands down the worst moment of my life. I had just arrived by ambulance 20 minutes prior from our neighborhood hospital that only has a Level II NICU. My husband hadn’t yet been allowed to join me. When I think about that moment one year later, I still get nauseous.

The new preemie mama and daddy that were made today had twin girls at 33+6. The first baby came naturally, but an emergency c-section was needed for the second. Please keep this new NICU family in your prayers. I hope their little ladies are feeder/growers and home soon! And all my best to the mama as she heals.

Ironically, this friend and her husband were our support the night I was admitted. They came to the hospital to support my husband through a night where the slightest movement from me would make baby’s heartbeat coming through the monitor fade away. They are wonderful, beautiful people and I am so sorry prematurity has touched their family almost 1 year to the day after they stayed up all night with us.




Drake’s 3rd Birthday

February 20th, 2015

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