To Eat or Not to Eat…that is the question

Failed weight check. I had to remember our excitement when Drake was actually on the weight chart earlier than expected. No one, preemie parent or not ever wants to hear that their child may not be thriving.

I am trying to remind myself that it was a rough month for Drake. He had surgery and he’s battling the 2nd week of his first winter cold.

It just takes me back to that day in the NICU when my favorite nurse sat me down to talk about the need for additional metabolic testing for him. Or the day we were told on rounds that he needed to be taken up to 26 calorie formula because he just wasn’t gaining at a rate they would like to see.

His pediatrician did give us the go ahead to let him have fun on Thanksgiving. He definitely enjoyed “real” mashed potatoes and getting to smear his food around and make a big mess at Grandma’s.

3 more weeks until the follow up. We’ve changed things as suggested, and I’m hopeful for progress.

 

 

2nd World Prematurity Day, November 17, 2012

Prematurity, talk about it. Be aware. Let’s stop the #1 cause of infant mortality in the world.

Drake is very, very healthy for a 2lb-er, 30 weeker and we are still working through effects of prematurity for him. I have still needed to change my career so I can care for him in the way he needs. In addition, he’s being treated for a birth defect and had surgery at less than a year old.

I want to use our experiences as a family to make a difference.

 

NICU journey in PICS

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. 🙂

Developmental Assessment

I’m a weird mixture of scared and excited about this appointment. I’m definitely not an expert on infant/early childhood development as my education and work experience tends more toward the financial world. I can see where Drake is and what I think needs improvement.

His pediatrician believes him to be making good progress as of his 6 month wellness checkup. That is good progress for a 6 month old who is really barely 4 months old. He’s still got a tendency to be a picky eater, and some family members are trying to make me force him to sit up on his own (like I have control over that). I’m very careful not to use “Dr. Google” or make comparisons to a friend’s baby who was born 3 days after what should have been our due date.

Just like the NICU, this is unexplored ground for us. I’m so thankful my husband was able to take a half day on Thursday to go with us. He may think of things that I would miss.

So at 8 months, 3 weeks/6 months 2 weeks adjusted, he is

1. sitting with support

2. grasping object and stuffing them in his mouth

3. stealing his feeding spoon

4. eating 4-6 tbsp of pureed food/28 to 30 oz of 24 cal formula

5. getting up on his hands and knees and rocking but not crawling

6. laying on his belly and kicking and swirling arms like he’s swimming

7. on the growth charts for height, weight and head circumferance (1% baby yeah!)

8. wobbly standing if I set him on his feet

I think he may need help with:

1. a week core? the not sitting thing does bother me with the amount of tummy times he gets

2. talking/communicating – he’s good with various cries and has some babble, but he’s not exactly following the ga ga, baba, mama, dadada thing to me

3. his leg muscles especially calves are pretty underdeveloped looking after the clubfoot casting and treatment

 

I think he is an amazing miracle. I want to make sure he gets help if he needs it.

Remember World Prematurity Day, November 17th!!! All babies deserve a healthy start!

Prematurity Awareness

First, Drake’s surgery went very well. He had no indications of respiratory distress and is recovering well after 1 week. He did seem to lose some weight as it was hard to ramp his feeds back up. He had some mouth swelling due to the hemangioma injection and sounded hoarse from the intubation.

November is prematurity awareness month, culminating in World Prematurity Day on November 17th. I encouage everyone to take this month and learn more about the impact premature birth has on our country and the world.

In the US alone, 1 in 8 babies are born prematurely each year. That’s over half a million preterm infants. The effects of preterm birth are wide ranging from being the leading cause of infant death to developmental issues that continue throughout life.

How can we help reduce the number of babies BORN TOO SOON?

Take the time to review information at the March of Dimes and their research into prematurity and birth defects.

Here are some great resources and preemie parents’ blogs.

March of Dimes – supports research, parent information while a child is in NICU

Kentucky Special Born Too Soon Report – Kentucky has one of the highest rates  of prematurity in the US. I am fortunate enough to live in the Cincinnati metro area with amazing resources like Cincinnati Children’s and Good Samaritan Hospital, but many areas of our state are rural.  Let’s work on 39 weeks Kentucky!

Life with Jack – the journey of a 23 week miracle micropreemie and his family

Ain’t No Roller Coaster – the journey of Owen, a 24 week miracle micropreemie and his family

Hand to Hold – A preemie parent support resource

Life After NICU – A preemie parent support resource

Sincerely,

A Proud Preemie Parent