Posts Tagged ‘30 weeker

08
Mar
16

Tomorrow!

Well visit tomorrow to discuss all the things (and get shots, yuck!). The nurse called yesterday for the pre-planning phone session. I picture the RN’s at our pediatrician’s office doing paper, rock, scissors over who has to call me. “Oh that’s the mom that will actually have real, scary questions. I’m doing that one after lunch!”

I have my pediatric research data file and questions in hand. I really hope I am not over “Dr. Google-ing.” I tried to limit myself to one week buried in fear and seeking answers online. Then I stopped (until today) in an effort not to fall into what hubby calls “my cycle of negativity and panic.” Husband and I discussed our plan. We present our findings and feelings, we listen to our trusted pediatrician’s feelings, and if we aren’t comfortable with his opinion we will request a referral to the specialist at Children’s.

I’m still unsure about genetic testing. I don’t know if we should start with the genetic counselor and then go to the specialist. We’re just really lost still and we are praying that our pediatrician can steer us in the right direction without dismissing things entirely.

We’re also hoping our growth chart results are still ok. He’s been fluctuating between 28.3 and 30.6 pounds for the past year. He did top off at 31.2 at his last specialist appointment, but that just seems awfully small for a 4 year old. He was also borderline on anemia last year, so I mentioned whether we should do that check, also. And Orthopedics follow up is Friday for our first annual clubfoot check up after giving up night-night shoes!

On a positive note, HE EATS VEGGIES NOW!!!! One night we sat down at the table and he just started gobbling up peas. I was so flabbergasted that I stared, but luckily I kept my mouth shut. Now he will request peas as a snack. Preschoolers, am I right?

 

 

 

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20
Aug
15

Back to School

It’s back to school week! So far no new seizures. My little man moved up, literally to the upstairs, to the Preschool 2 class. The big goal for this year is to write his name before moving to pre-K (!) next year.

The first homework assignment this week was to fill out an about me sheet. The first few questions were the typical what is your name, what are your parent’s name. According to Drake, he wants to be a librarian and his favorite foods (that he doesn’t eat) are chicken, hamburgers and bread. I was tasked with filling out the “something special about me” section. For the first two years, I always put something about his prematurity or clubfoot and what he has overcome. This time, I wrote about his love of travel and “cations.” He is so excited to use his passport to go “to PIRATE island” in 8 weeks.

In a way, it feels like a betrayal to how awesome he is to not share that part of his story. Prematurity will always be an important part of his story, and his new teacher has been made aware of his current challenges. However, prematurity is becoming more my story and his dad’s story than his, and I am so relieved.

According to my Facebook “on this day,” 3 years ago we went back into hibernation. Drake had been out of the NICU since late March and we were on RSV isolation from March to late June because it was a bad year with numerous RSV cases. Despite his need for surgery in November, Drake still didn’t qualify for Synagis even with his doctor and us filing a formal appeal. I was lucky. My job agreed to let me work part time and mostly from home, so my husband and I were able to make it work without the loss of my entire income.

RSV isolation, especially over multiple years, is HARD. Hugs to all the families prepping to spend the winter saying “no,” using copious amounts of hand sanitizer, and praying that their child makes it through healthy and at home.

   
    
 

06
Jul
15

The Not Quite Camp-out

$100 for a new tent.

$50 for sleeping bags.

$40 in hot dogs, marshmallows, drinks, and food supplies.

Not getting to go on our 4th of July (very first ever) camp out due to an ER visit?

My relief we were at home and weren’t in the woods when it happened.

Priceless.

The life of the NICU parent.

Every time, we start to think we’re getting “over it.” We spent most of the 4th at Cincinnati Children’s ER on Saturday.

They are pretty sure it was a febrile seizure. He had a suspected one once before, but it didn’t last nearly as long. We didn’t get him back to fully responsive and aware for about 3 hours.

I didn’t take pictures. I sat and I watched a blood pressure monitor and his father and I talked to him in soothing voices and we willed him to wake up. It was familiar. It was panic inducing. I was sick to my stomach the whole time.

We were in the same room they put us in when he was admitted 2 months after coming home from the NICU.

We have some new protocols to follow. The team thinks a “wait and see” approach is best for now. If it really is febrile, there is no need to put him through the neuro work up. If he has another, then we will make a new plan.

Stupid virus. Doesn’t it know summer is for fun?

03
May
15

Parents of Preemies Day 2015

This isn’t where you expected to be. You may have dreamed of celebrating Mother’s Day, Father’s Day, Grandparent’s Day. Here you are and it’s Parents of Preemies Day.

What’s this about? Am I celebrating the fact that my child came early and needed weeks or months of hospital care or possibly didn’t get to come home with me?

Nope, Mama or Daddy. It’s about celebrating you. You had to experience every fear of every parent from the first moment of your child’s birth. You are strong and you did what you had to do. You may not feel perfect, but that doesn’t matter.

You can find out more about Parents of Preemies day here:
http://parentsofpreemiesday.org

Happy Parents of Preemies Day. You are awesome.

cuddle PICC dad picking up

Today, I’m not celebrating with my guys because my new school term just started, and I was supposed to take a test on Friday that I have to finish today. But I hope everyone else can enjoy a beautiful Spring day!

30
Jan
15

Advocating for Your Preemie: School Years

We are entering a new, scary time in our family….dealing with public school and public school systems. D will be 3 in a few weeks. Back in October, he had his evaluation for public preschool. In Kentucky, you have to qualify in one area for a special need in order to qualify for public preschool and additional support services.

I was extremely disappointed in the way his evaluation was conducted. I was originally told it would be a 1.5 hour session, and we would need to come back to complete the other half. It turned into an almost 4 hour ordeal in which my 2 year 9 month old had assessments for OT, Speech, PT, and an IQ/Psychological evaluation.

The school psychologist was late, and so OT, Speech and PT were first. By the time he got to the final portion he was exhausted,  and it was lunchtime. Why did I let it go on? I don’t really have an answer for that. I think partly, it’s because so many of our (his dad & I) concerns for him have dealt with gross and fine motor issues.

Today, I received an IQ report that says he is mildly delayed and low below average, but not enough to qualify for services. That his score will probably impact him during his school age years, but not severely.

I just don’t see this. And his Early Intervention lead was in the meeting and agrees with me. So then my husband asked the best series of questions, how does this report impact him? Where is it stored? Who can access it? Do they need our permission?

I don’t really care about D’s IQ. I think standardized tests can be a tool, but for the most part it is just a snapshot of that day and how the person was performing.

We just want to help him the best we can. We are concerned that we have focused too much on motor and not enough on cognitive. And then I think that’s the preemie parent in us. We’re always searching for answers that aren’t there. We’re always wondering what we may have done wrong.

We just want to make sure we give him every opportunity to be the Drake he wants to be. That’s enough for us.

It’s been a rough week. Yesterday, we got some scary news at Ophthalmology follow up, too. Eye doc saw something very concerning, but D won’t be big enough for the pictures to fully diagnose and check it out until next year. I wish I didn’t even know about it. I need to find some new coping mechanisms for staying out of anxiety loops.

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




Drake’s 3rd Birthday

February 20th, 2015

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