Posts Tagged ‘prematurity

05
May
14

Parents of Preemies Day

May 4th was Parents of Preemies Day. This is an annual event created and supported by Graham’s Foundation to honor the parents of premature babies.

Parents of Preemies Day “recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family’s world upside down,” as quoted from the official Parents of Preemies Day website. You can find out more about the joys and challenges of preemie parenthood and ways to celebrate next year!

I had planned on taking part more fully in the official twitter chat because there are no events in our area, but we ended up going to Entertrainment Junction with Gammy to celebrate instead. You can search twitter for #parentsofpreemiesday to catch up on yesterdays conversations.

Our preemie parenting journey started on February 19, 2012. My water broke unexpectedly at 29+6 gestation at 10:10 pm and Drake was born the next morning at 10:07 am at exactly 30 weeks. Drake spent 34 days in the NICU. As a parent of a newborn in the NICU, you celebrate different milestones from other parents. The first day on CPAP instead of intubated. The first day on nasal cannula. The first time they can wear clothes or open their eyes. Day 4, the first day we were able to hold him and do kangaroo care was also the day I was discharged from the hospital. It’s a different world than any expectant couple believes they will experience.

Preemies don’t just go home from the NICU and magically transform into a healthy newborn. Families often face numerous, continuing specialist visits, special equipment, special feeding requirements, and isolation from their family and friends for protection from deadly viruses, such as RSV. Every family has their own unique journey. Our life after NICU follow-ups and specialists included clubfoot treatment, hernia repair surgery, mouth cyst, low tone, ophthalmology, failure to thrive and extra calorie intake, and cardiology. We were in RSV isolation March to June the first year and August to April the second year. We started Early Intervention at 14 months because he was having trouble with gross motor skills and communication. We have been lucky, so far all of Drake’s complications due to prematurity have been treatable.

As his parents, my husband and I both processed our time in the NICU very differently and the past two years have been a challenging time for our marriage. My husband had to work and finish the renovations on our house. My husband and his best friend had stripped our carpets the weekend I went into labor, so we were living at my mother-in-law’s house. I wanted to spend as much time as possible at the NICU, and my employer did not offer paid maternity leave. A lot of my emotional turmoil, pain, and hormones were borne by my husband in those early days. Our parents all still work, and were working out of town. We have recently begun discussing some of our feelings and the things that happened then. Even last year, many things my husband still preferred not to discuss.

Two years later, everything is getting better and our son is unbelievably, undeniably, amazing. We are in awe of him and how far he has come.

I hope all preemies and their parents had a beautiful Parents of Preemies Day 2014!

Side Note: We got his first school pics in last week, and they are fabulous!

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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?

07
Aug
13

Priceless

There’s a New York TImes article floating around preemie land. It discusses parent preparation for extreme prematurity and learning to make difficult medical decisions for your child.

I’m not going to link the article. The comments section is awful, and I wish I’d taken the advice of my sister and other preemie parents and avoided it.

My son was a 30 weeker. He was 2lbs, 14oz (1304g) at birth. He had trouble gaining and at his lowest was 2lbs, 9oz (1162g). He had a fairly easy NICU journey. We had a lot of trouble with A&B’s and jaundice at first. He’s considered very low birth weight.

Without medical intervention, my son would have died at birth. He was not breathing and was ventilated, moved to CPAP, and on nasal cannula during his NICU stay.

I loved Kangaroo care, but at first every time we’d try to settle in together he would have and “episode”. That respiratory rate and oxygen number ticks down and you try to stay relaxed. Breathe baby, breathe. Stay with me.

He has some muscle tone and other developmental delays that we are working through with the NICU follow-up clinic and Early Intervention. It is thrilling to watch him learn and progress.

I firmly believe there is no way to prepare parents for the NICU. Every stay is different, every child and their medical needs is different.

I’m glad we didn’t have to make the hard choices. We were never faced with a no hope or extremely dire situation. We would have done our best, and I think that’s what most parents do.

Never tell me that due to cost or developmental delays or medical issues that saving a life isn’t worth the trouble or expense. I just won’t agree with you. You’re not God, and you don’t know the outcome.

I do think my doctors during my rocky pregnancy could have prepared me better, and armed me with some knowledge. That’s the only thing I would change about D’s birth.

I will admit that the fear of another preterm birth experience and what it would mean for that child does make me shudder inside when people ask when he’s getting a sibling.

11
May
13

Haunted

Every time I shifted, the steady whoosh-whoosh of the fetal monitor would disappear. I was so scared to go to sleep, afraid that the tiny little man inside would disappear.

The look on the triage nurse’s face at L&D of the hospital I was transferred to just before she slapped an oxygen mask on me and propped me up on my left side.

An entire night of trying to convince the medical team that I was having “constipation pains” and not contractions. I refused to make a sound, believing that would make him be born sooner.

We’re supposed to go to a birthday party today at 1pm. This little boy was born 3 days after my original due date and the differences between the two boys and their development…

Oh I know I’m not supposed to compare, and I can remember that so easily in the comfort of my formerly RSV isolated home.

But I am sitting up, awake, terrified of a 1 year old’s birthday party with other full-term kids. How stupid is that?

With a million “what ifs” running through my head. The main one being, “What if he gets sick?”

But we can’t live in our safe bubble forever…

29
Apr
13

A Little Cloudy, A Little Wet, A Lot of Fun!

What a great day of fun with family and friends! And how inspiring and healing!

I really wish I had made the time to attend the family team poster event sponsored by our NICU. That display of posters for angel babies and other NICU grad families was probably the single most powerful thing I have witnessed since last February. Such beautiful loving tributes.

Amazing to see so many preemie, NICU, and birth defect affected families coming together for a cause they feel so strongly about.

Plus, I got to stand next to a NFL player!

The best part was of course the great snapshots of our son getting to enjoy a large event for the first time.

Family Team Photo

Family Team Photo

Waiting For Start

Waiting For Start

Ominous Clouds, 4 miles to go

Ominous Clouds, 4 miles to go

Check Point NKY, halfway

Check Point NKY, halfway

Crossing Bridge from NKY back to Cincinnati

Crossing Bridge from NKY back to Cincinnati

Crossing the finish line!

Crossing the finish line!

Good Sam was our NICU hospital

Good Sam was our NICU hospital

# of Premature births in Ohio

# of Premature births in Ohio

Why We Fight

Why We Fight

It was a celebration, and I needed it. We exceeded our team goal by $200!

 

04
Dec
12

It’s Beginning to Look A Lot Like…

Follow ups. LOTS of them. I know compared to a lot of preemie parents our slate of appointments is low load. Over the next few weeks we have Eyes (double check those retinas), Foot (make sure we’re keeping the same level of correction and dorsiflexion), Weight (day after Christmas, sadface) and ENT to check to see if the steroid injection is working. 

I received the formal report of Drake’s developmental assessment. The official diagnosis are prematurity and low birth weight of <1300g, developmental delays, and hypotonia of the  lower extremities. We go for a follow up in six months. Time to get him enrolled in EI, especially while I have the time to be at home and work with him. 

We have a mobile baby for Christmas! He is commando crawling EVERYWHERE with his belly on the floor, and pulling himself up to sit since Sunday. So proud of our little fella, go  buddy go! Although, mommy will miss the “swimming” it was just adorable to see him pinwheeling his legs and arms with his belly on the floor. 

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Unfolding His Laundry

I found this image on my old cell phone. It’s the day we went home from the NICU with all 4lbs, 7oz of Drake. I couldn’t tell if he was breathing well in his seat so I held my finger under his nose the whole way home. 

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Coming Home




Drake’s 3rd Birthday

February 20th, 2015

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