Posts Tagged ‘baby

15
Jan
13

A NICU Dad

When a NICU mom is born, so is a NICU dad. I have a tendency to forget that my husband had his own experiences with Drake’s birth. Joel at Papas of Preemies reminded me today with an invitation to share our husband’s stories. The new series is called, “Moms Say Thanks,” and I am honored to have shared our story with a guest blog. 

You can find my submission at Papas of Preemies here: MOMS SAY THANKS – A NICU DAD

holding daddy's hand

Thank you for loving us so much.

Daddy & Drake

16
Nov
12

Assessment Update

Drake had a pretty good assessment. The team consisted of a physical therapist (his one from the NICU, I was GLAD to see her), audiologist, speech therapist, occupational therapist and neonatologist. All of his tests were testing him at his adjusted age of 6 months, 2 weeks not his actual age of 8 months, 3 weeks.

His daddy and I were a bit shocked when they asked us to participate in a research study following neonates born at less than 33 weeks gestation who were on extended ventilation. We don’t think of it that way as he was only intubated for about 6 hours, but apparently all the time on CPAP and nasal cannula counts toward that as well.

He was a bit too young for the hearing test to be conclusive so the audiologist will retest him in 6 months. He did ok with parts, hated their high chair, and didn’t want to have anything to do with one part of it. Stubborn little dude!

He excelled at fine motor skills like picking up cheerios with both hands and grabbing some blocks and other objects. The occupational therapist had a good time wrestling the cheerios away from him. They rated him at 7-8 months his actual age.

His speech/communication they rated at 5 months. He wasn’t feeling particularly outgoing as it was his nap and eating time, so I think this will be better the next time. He is very animated and knows how to get his point across, but there is a specific progression to the babble that they want to see. So that was his one weak point.

His gross motor skills they rated at 5 months. Mainly due to the weakness I was most concerned about, his truncal tone (core/abdomen). He sits ok with support, but with all his rolling and attempting to crawl I was really concerned with his slumping and lack of interest in trying to sit on his own. So this diagnosis is truncal low tone which she said was typical in preemies born at that low of birth weight and gestation and gave us some exercise to work on with him.

For now they want to see him again in 6 months, and we will also be getting a detailed report along with his pediatrician.

We also got to drop off a thank you card to the NICU staff, something that was good for mommy’s heart. 🙂

06
Aug
12

Brace Check #2

Last week, Drake had his follow up on his clubfoot at the halfway point of his 23hour wear portion of his treatment. Everything checked out well, and it was such a relief.

Any Ponseti treatment trained specialist is going to tell you that clubfoot treatment is 5% medical/95% parents. You have to be committed to the bracing protocol 100% or your child will relapse and it will be necessary to go through the casting phase all over again. There is always a chance of relapse, but the probability drops drastically if you follow proper bracing protocol.

The best part of my day is watching Drake kick his happy feet in his tub during his bath or smile and coo because his comfortable during his tummy time play. It is NOT easy to put his shoes and bar back on as he fights me with every fiber of his being, wailing at the top of his lungs, with his pouty bottom lip poked out.  There have been nights I sobbed about it afterwards. Nights I rocked him to sleep because he’d wake himself up knocking into his crib and wake up screeching in fear.

A 6 month old doesn’t understand why his mother is doing something he hates. He doesn’t know why his feet have to be locked into position 23 hours a day. I explain it to him, and I strap him in because I know that when he is running pain free at 5, 10, 20 years old that will be all I need to erase the memories of making my baby miserable away.

It is HOPE for the FUTURE. That’s what makes it possible to do this everyday.

09
Jul
12

One Hot Day

Yesterday, the temperature was slated to reach a whopping 105 degrees. That is very hot for our area of NKY. We had plans to hang out with the baby in our wonderful AC.

Around 1pm, my husband ran out for drinks and some chips and salsa. About 2 minutes after he left our driveway, our power went out. I grabbed my phone and called the electric company. (I was the FIRST in our area to report the outage! New mom/preemie mom prowess.) The status message said problem with their equipment estimated restoration 5PM. Yuck.

We decided to head to Applebee’s for lunch because we know they are non smoking. Normally, we would avoid having Drake out in that kind of heat at all. It tends to get very smoggy here in this kind of weather. Not good for preemie lungs.

After a bottle for Drake and an appetizer sampler for Mommy & Daddy, we decided to pack up and go check on the house.

It was now about 3pm, and the estimate was still being given as 5PM. We weren’t ready to admit defeat and head to Grandma’s (whose power was actually out for 8 hours compared to our 4!). The house still felt moderately cool compared to the outside, so we decided to hit the bookstore for some more books for Drake and try again after 5PM.

We called from the bookstore about 4:45PM, and the restoration estimate had been pushed back to midnight! Sigh. Time to pack up. We were overjoyed when we pulled in the driveway and saw the porch lights on. Yay!

Two incidents other than trying to keep Drake and ourselves cool, cast a shadow on the day for me. This is the typical conversation when people notice Drake:

Random Stranger: “You have a beautiful baby!”

Me: Thank you!

Random Stranger: “How old is he?”

Me: Four months

Random Stranger: “Really? He’s so small.” (because I totally don’t know how old my kid is, right?)

Me: Really. He was 10 weeks early.

Followed by them acting awkward and me feeling both like I should apologize for my small baby and for failing to carry him for 9 months. It brings back every insecurity, every feeling of dread from sitting beside his isolette in the NICU.

The worst and most painful memory it brings into full focus is the day I was discharged from the hospital. My doctor conspired to keep me admitted for 5 days, but that’s the limit of my insurance for a c-section. After a day of the L&D floor nurses & staff trying their best to get me to “check out,” I was exhausted and I was trying desperately to hold myself together and not become an emotional wreck in the middle of one of the largest hospitals in Cincinnati.

Another mother was leaving at the same time. She had her husband holding the car seat. She had her baby cradled in her arms. I had my parents, my husband had to work, and the memory that I had just held my child for the first time for 15 minutes and now I had to abandon him there to the care of strangers. I will never forget that moment. That was the worst moment of my life.

Every time I hear, “he’s so small,” I’m taken to that place 4.5 months ago when I left the hospital without a baby in my arms.

 

06
Jul
12

Wellness Visit

I dread these visits. We get our baby’s height and weight and find out how he’s doing when compared to babies of his birth age instead of his gestational age. We also get asked the developmental questions.

These things make me so afraid.

I don’t want to be afraid. I want to revel in my amazing son who has gained 9 (!) pounds since he was born 2.5 month early. This was a mixed visit. We had the good news of being on the chart for the first time. 1% yay! Followed by the need for one more doctor, and ENT. Drake has a cyst in the corner of his mouth that he’ll have to have surgically removed.

He’s an amazing baby. Sleeping 7 hours a night, starting to coo and smile. We’re living on Drake time and it’s a fun time zone.

We got to take him to his first large family gathering since the end (finally!) of RSV season in our area. It was an awesome 4th BBQ at Grandma’s.

 

01
May
12

Weeping Shall Endure

Yesterday, I received a letter from our insurance company denying coverage for Drake’s next Synagis shot. The reasoning given was that the season ends in March and giving the shot outside of the season shows no benefit. However, I can go to the RSV tracking system on the cdc site, and see that while cases are declining our region is still not done with it due to a late onset.

http://www.cdc.gov/surveillance/nrevss/rsv/state.html

The secondary reason was that as a preemie of 29 to 30 weeks gestation, he doesn’t really need it anyway. Excuse me? So now, I’m waiting for the pediatrician’s office to call me back. They have a special person on staff to deal with appeals like this.

The whole thing came after a night of nonstop crying due to gas and reflux. So I was exhausted anyway, and I just lost it. I was washing and sanitizing bottles and having a nervous crying fit. All that runs through my head is the pictures of infants who have had it I’ve seen on the literature for Synagis and RSV.

I don’t think I have the strength to endure another NICU stay for Drake. And you’d think the stupid insurance company after spending half a million or more dollars on his first stay would want to pay a paltry $1k to keep him from going back.

One thing that got me through his first stay and going every day to the hospital and leaving alone was a mural at Good Sam. When you come into the hospital on the 5th floor from the parking garage and make the right to take the elevators to the 9th, there’s a mural. It’s done in bright yellows and blues and it has that verse. Weeping shall endure for a night, but JOY will come in the morning.

And I have to keep telling myself that every day.




Drake’s 3rd Birthday

February 20th, 2015

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