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.

Breaking the Weight Barrier

Yay! We had a well visit and he weighed over TWENTY POUNDS!!! (20.8), BMI 15.5, and managed to stay on his curve within the bottom 1% for his age.

Since he’s looking good, and growing well we get to try coming off high calorie infant formula and just add some other types of high calorie liquids to his diet along with his food. I am so excited. We said goodbye to bottles about two months ago, and now we get to say goodbye to formula.

I know that it probably seems like a weird milestone to be so excited over. His high calorie formula and weight gain have been at the center of all my worries and fears since he was born. I feel like a very large scary elephant has finally started to lumber out of his corner of the room.

Sterilizing gallons of water and zillions bottle parts. Giving myself second degree burns leaning over a steam bottle sterilizer at 2am. Feeling like we should buy stock in Neosure. Going to cardiology. Having metabolic tests run and then run again. Weight checks.

Done, Done, Done!

For anyone out there still struggling through failure to thrive, or failure to gain, or any other preemie-ness things, I am praying for you and thinking of you, Moms and Dads. I hope you get some unexpected milestones to celebrate, too.

We celebrated last night by taking a picnic dinner to the city skate park and watching the bigger boys do flips and turns. He was ready to push his little umbrella stroller out and join them on the course.

Exciting Times

I love the point we have reached. We’ve received our six month EI plan. August appointments have been set for therapy and other follow ups.

It feels good to know what we have been working on well and what could be adjusted.

It is hard to deal with those who assume we weren’t doing things right when there really is no right or wrong with developmental delays.

We can’t answer when he’ll be “fine” or “caught up” whatever that means anyway. But the three of us and our therapy/medical team are doing our best. And we’re going to enjoy learning together.

17 Months Old Adventure

Saturday D turned 17 months actual, so we woke up early and had a morning zoo adventure. It was the first time we managed to make it to the zoo right at opening. We scored a premium covered spot in the main lot.

We have a zoo membership so we skipped the ticket line and headed for the map to see what we’d like to do for a few hours. We decided on the Insect House, Carousel, and Manatee Springs as our main attractions.

The Insect House adventure started out with a scale that gives your weight in bugs! Wouldn’t that make a fun change from NICU stays measured in grams?

Drake was 2 million bugs.

Daddy was 32 million bugs.

Mommy was 20 million bugs.

We took our first family ride on the carousel. The elephant was a bit too big, but the zebra was just right!

I didn’t take any pictures in Manatee Springs. I was too fascinated by the zookeeper presentation. Confession, I ADORE going to the zoo. 🙂

Cincinnati Zoo is one of only two zoos outside of Florida that host manatees. They are a manatee rehabilitation center which means their manatees stay for a short time to get well and get reintroduced to the wild. Betsy and Woodstock are scheduled to leave sometime this fall. Manatees have small eyes and live in water that is hard to see in, so they have tons of hairs like cat whiskers all over their bodies that help them navigate in the ocean. Yay fun facts!

After the manatees, it was time to head for lunch. I have to say the nursing/family suite at the Cincinnati Zoo is also an amazing space. It’s air conditioned has comfy sofas, a great changing space, and toys for toddlers. We made a side stop for a diaper change before heading to the car. As we left, we noted the LOOOONGG lines that we avoided by going early.

We finished up with some lunch at Izzy’s Deli, and shopping at Tuesday Morning where we scored this fun plaything…

This afternoon is our first PT visit. Time to get to work! It’s hard to believe he’ll be 2 in 7 months, and then we stop adjusting for prematurity.

THE Look

Pet Peeve, time.

We can’t go ANYWHERE lately without being asked how old D is. Then it’s followed by that incredulous look and sometimes with a spoken, “Really?”

Ouch. Right in the preemie mama feels.

I was there for his birth if a bit groggy from the no sleep and meds to stop labor. I think I KNOW how old my child is. I have to count every calorie that goes into his mouth, and I still know what his exact weight is.

I usually offer a “he was early” and move on.

I do know someday in the not-too-distant future he’ll start to answer for himself. “I’m this many.”

Will he be questioned, too?

Saturday is 17 months day. We’re going to go to Big Bone Lick State Park and see the fossils and baby bison.

Friday is goal setting day. I’m looking forward to having a more formal plan to guide us for the next 6 months.

Getting Started with EI: Routines

Our second in-home Early Intervention visit was this past Friday. They sent a prep sheet about our daily and weekly family routines.

I was curious about this meeting. Our family routines are the heartbeat of our daily/weekly/monthly life.

I wasn’t expecting how I’d feel at the end of our hour long interview. Drained.

Being asked to rate how your child’s medical conditions/behavior/gross motor & fine motor skills affect your daily life really starts to bring out the little issues. The ones you ignore day to day because you’re the mom and you would go to hell and back for that mini human.

The questions about my me time and when I get stuff done also caught me off-guard.

The one that kept me up Friday night was “What are your concerns for your child that worry you the most? What keeps you up at night?” Are you really sure you want to open that bag of worms, lady? I’m awesome at worrying something to bits. 🙂

I’m very happy with 9 preliminary “goals” that came out of the meeting. I think it will do a TON for D’s quality of life to start working on these things.

I learned how hard it really is to think that your care/teaching isn’t enough for your child. You would think that lesson would have been made abundantly clear to me in NICU days. I am by no means a “kid” expert. I didn’t babysit. My youngest sister is only 4.5 years younger. My only kid experience was being one. I really appreciated our coordinator taking the time to point out that I was doing great with him and his needing additional therapy was no reflection on my teaching/guiding abilities as a parent.

I’m still a little sad that this is all necessary for him, but I am hopeful that I will enjoy this team and our work together for D’s well being as much as I enjoy working with his NICU follow up and medical team.

Initial recommendation is PT twice a month and Speech/Feeding once a week for the next six months, and then a follow up evaluation to see how things are progressing. We also received a list of where he’s at with various development and some goals and exercises to work on ourselves.

Our next meeting is scheduled for the end of this week and it will be the “goal setting” meeting.

 

 

 

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

One Step At A Time

Never again will I post BEFORE we go to an assessment or appointment.

So we have the good and the not so good.

1. Low muscle tone and hyper flexible joints are holding back his gross motor skills like walking. The team also thinks its causing pain/discomfort when sitting still, so it’s why he has trouble focusing on things like eating.

Suggested: Get enrolled in Early Intervention and if he’s not walking solo in 3 months (18 actual/16 adj) we need to consider AFO options after a consult with PT.

2. His verbal skills are awesome. 11 words and going.

3. His weight/height are on his personal curve and increasing at a rate that pleased the neonatologist.

4. They want him in the follow up clinic program until at least 2 actual. Next appointment in 6 months.

5. We toured his future preschool today. He has to be off the bottle completely and walking independently for the half time 18-24 mo class. The will give him his extra calorie formula in a cup as needed and have cared for preemies previously. Plus, Asst. Director is a family friend.

So now to set up the EI evaluation, and hope.

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 

Spring Adventures

In the three weeks since we’ve had RSV restrictions lifted, we’ve had a sneak peek of the summer adventures ahead.

So glad we could give him the healthy start RSV isolation afforded, but venturing out as a family is pretty awesome. Last night my husband needed to buy a gift for work, and we just picked up and went as a family after dinner. Too fun.

I’m sure the novelty of family outings will fade with time, but I hope we can always remember the joy of getting to venture out together as a trio.

Some of our April Adventures:

At work with Mommy

1st Trip to the Zoo

1st swing at the park

Discovering “nooks”

 

I will confess that I used sanitizing wipes on the swing before I’d let Gammy put him in it. Once a preemie mama… 🙂