Archive for the 'Preemie' Category

15
Mar
16

Don’t Tell Me It’s “FINE”

He’ll be fine.

It’ll be fine.

My daughter only weighs 5 pounds more than him and she’s FINE.

I knew someone with clubfoot and he’s fine.

My preemie was never in isolation and she’s fine.

FINE. FINE. FINE.

Yeah, he’s mostly fine. I am not fine. This may turn out to be nothing. I hope to God and all the other powers that be that it turns out to be nothing. But if it is something? What then?

Someday, I will learn that when an acquaintance asks me how I am the truth is almost never a good idea.

“How are you today?”

“Ok.”

“Aw, it’s a pretty spring day. Why are you just OK?”

Because I’m waiting to hear if my child has a serious condition and the specialist appointment is still 3 weeks away. Because, I just don’t feel fine today.

I need to let it go. I need to stop the negative cycle so I don’t beat myself up when (hopefully) everything is fine.

The difference between me and some other moms out there? There have been 4 (5 if you count the scary pregnancy) years of moments when a ton of crap wasn’t FINE.

Because I actually like and respect this person, I went with a bit of truth. (mistake)

“Because we have to add a specialist from Children’s to Drake’s care team…again.”

Then, I had to give more of the story than I really feel like telling. I really want to be that optimistic mom, the one who is unshakable and believes the best until the worst is confirmed. Unfortunately, being positive is something I suck at.

To top it off, he only ate about 300 calories yesterday. GRRR.

Poor blog, I only feel like journal-ing when I’m “sad mad.”

 

14
Mar
16

Spring Specialists

On this day four years ago, the lid came off and little guy was able to hold his temperature. The A’s & B’s and weight gain were all that stood between him and home. We started focusing on his special foot and what he would need when he came home.

Foot stretches and PT have been part of D’s life since week 2. On Friday, we got the good news that his clubfoot correction still looks to be holding and his year off from braces didn’t seem to impact his structure. We are to keep doing the stretches and his doctor added a new one to strengthen the outer left side. We love his orthopedic surgeon, and it was awesome to hear some good news. It’s hard to believe he was only 4lbs, 10oz at his first visit with her.

At the four year old well visit, he’s taken a big hit on his weight and BMI curve which we were expecting to hear. He only gained 2.5 lbs over the past year. The good news is he did make a jump on his height curve up to the 20th percentile, so despite the trouble with weight gain he IS growing. His doc and I discussed the measures we had taken moving him to a private sitter instead of preschool for the winter to give him a break from all the sickness he had last year. His dad and I were hoping to prevent the hunger strikes. We went over a meal plan, and we need to follow up quickly if he stops eating. Last year, it felt like we were through the eating and weight gain hurdles so it’s disappointing, but at least we weren’t blindsided with it.

With very little prompting, I was able to get the referral for the other thing that I am determined not to think about until our April 5th appointment. His doc even recognized one of the authors of the research study that I brought to the appointment as someone he knew from our children’s hospital.

 

 

 

16
Dec
14

Treading Water, but Ok.

We’re all ok.

We went on vacation to Florida in October. I didn’t post about it. Drake had a horrendous bout of croup while we were in Florida. I almost took him to the emergency room, but his pediatrician on long distance listened to him over the phone and advised hot steam in a bathroom instead. Not breathing well is never a state you want for your kid. He was well the first night and we went to Mickey’s Not-so-Scary Halloween Party. That was a blast. The rest of the week. Not so much.

He has been on antibiotics every 3 to 5 weeks since April. Within 2-3 days of the start of the sniffles, it goes straight to both his ears. Our follow up from the last Sunday urgent care visit is tomorrow. I’m going to push for him to visit his ENT. His mouth cyst could use a check anyway.

We are nearing the end of our EI, First Steps journey. Our final IFSP meeting was last week. The week prior he had his evaluation with his future elementary school if he qualifies for preschool at 3. His PT is pretty sure he will. She, and our coordinator are going to come to the January meeting about his assessment results.

I am torn, and so is daddy. Obviously, we want him to have the services he needs, but we really like his private preschool. Flip side, we could really use the economic break of a half day of free school. Ugh choices. And if we don’t start him on IEP’s now, if he needs help later what will the battle be like to get it?

He’s just not there yet gross motor wise. We’re operating in the 20-24 month range, which is great for where he started from, but I KNOW he needs the PT services to continue. I joined a Hypotonia parent group on Facebook.

We are worried he may have had a seizure after spending the night with his Gammy. She said he spaced out for a long time and touching him and speaking to him she couldn’t get him to answer. When he came out of it, he just said Hi Gammy like nothing was wrong and she took him to school. Pediatrician is having us keep a journal and taking a wait and see approach. He’s never done anything similar to me.

I have been asked to teach an associate’s level class next semester now that I have completed enough graduate hours. I am really excited and I hope it is a good experience for myself and my students. It will be a small business finance class.

And then…Christmas. And then…3. What the heck? Where did my tiny baby go?

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

17
Aug
14

Back to School, Work, Life

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

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!

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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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Drake’s 3rd Birthday

February 20th, 2015

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