Monday, April 28, 2008

The Importance of Swim Lessons

Well he did it. He fell in. Tonight, we were sitting in our new grassy area in our backyard and Truman was playing about two feet away on the concrete when he leaned too far over and fell in the hot tub. We jumped up and fished him out immediately. He didn't even cough or seem phased by the misadventure. He did exactly what they taught him at Emler Swim Center last summer: held his breath and didn't panic.

We were right there, but he got away from us. It really goes to show the importance of never leaving your child near a pool unattended. We never have, and we definitely never will until he is much older and has passed all his lifeguarding courses. But just to be safe, guess who will be calling Emler tomorrow and paying tuition for this summer's classes?

Thursday, April 24, 2008

March for Babies

Thanks to all of you who walked with us and supported our walk. It really means a lot to us that you all would support us in supporting the organization we owe Truman's life to. With your help, we were able to raise more than $3200 for the March of Dimes.
Along the walk path were signs in honor of or in memory of premature babies. Although we saw a couple of babies with smaller birth weights, we didn't see a single surviving baby that arrived earlier than 23 weeks and zero days. It's just another reminder of the miracle that we are raising. It makes me even more committed to continuing to raise funds for March of Dimes to make sure fewer families face prematurity and that more babies have "in honor of" rather than "in memory of" signs.

Monday, April 21, 2008

Interesting NICU Statistics

A recent Houston Chronicle article appeared on a new tool to better predict outcomes for extremely premature babies. It included a link to a prediction calculator based on statistics such as gestational age, weight at birth, sex, and whether the mother received the lung steroids prior to birth. Here is how Truman fared:

Outcomes for Mechanically Ventilated Infants
Survival 24%
Survival Without Profound Neurodevelopmental Impairment 12%
Survival Without Moderate to Severe Neurodevelopmental Impairment 6%
Death 76%
Death or Profound Neurodevelopmental Impairment 88%
Death or Moderate to Severe Neurodevelopmental Impairment 94%

As much as I am a proponent of making sure to properly recognize Truman's disabilities and challenges, this goes to show that statistics are often crap. Either that, or it's one more piece of evidence that Truman has beaten a lot of odds.

Thursday, April 17, 2008

March for Babies this Weekend

The March for Babies is at 9 a.m. on Saturday. If anyone still wants to join our team or support the March of Dimes, we would love to have you. Please click here for either:

Monday, April 14, 2008

Sick again

Truman is sick ... again. It's another cold-type something. However, this time the accompanying vomit is even worse than usual. Last night, for the first time, we saw him wretch even after his belly was empty, and he continued wretching for some time. It was so sad. He couldn't keep anything down last night. And unlike his usual vomiting, this one clearly either hurt or scared him.

And, no, it's not a stomach bug. The throwing up is because of the nasal drainage. With his super-sensitive gag reflex and propensity to vomit anyway, the slightest coughing or runny nose can set him off.

There is no way he hasn't lost weight because his appetite is way down and the only thing that will stay down is unfortified breast milk. We haven't been able to keep solids down him for days, and of tomorrow, he will have been sick for a week.

Saturday, April 5, 2008

Tiny Boys

Top 10 Things You Never Think About with A Tiny Child:

1. Chicks and ducks -- 20 months is too old for chicks and ducks for a boy, but 6-12 months clothes are covered in chicks and ducks.

2. Shopping cart straps only go so small. This fact results in a flipping completely around in and standing up in a shopping cart despite being strapped as tight as it goes.

3. Restaurant high chairs -- see No. 2.

4. Home high chairs -- see No. 2 and 3.

5. People guess your child's age at about half -- forcing you to enter in the preemie conversation whether you want to or not.
6. Diapers can be outgrown in length, but not weight.
7. All children's waistbands assume fat babies.
8. Feet don't touch the ground on ride-on toys.
9. They disappear in baby swings. See Nos 2 - 4 above.
10. They are so darn cute and totable.

P.S. Despite the first picture above, he's not walking on his own yet, but he is now willing to take a few steps with only one adult hand to hold.

Thursday, April 3, 2008

Weight Check

Truman had a weight check yesterday. Over the last six weeks, he grew an average of five grams a day to reach 17 lbs, 5 ounces. Slow growing, but it's growing, which we've come to realize, is all we can ask for.

We discussed the feeding issues. Neither the pedi nor the nutritionist seems to have many suggestions other than keep trying and working at it. It's hard because as Dr. Suterwala said, the problems are probably a combination of texture sensory issues, Truman's personality and will, and our stress over growth. I don't think we've been able to convince anyone of the sensitivity of his gag reflex. Like last night, he fell asleep eating before bed. When we had to wake him up to change his diaper, he got so mad that his crying set off the gag reflux, and a monster vomit erupted and erupted and erupted. Once the vomiting starts, he has no control over it until everything that's in his belly is out of his belly.

We also got the go-ahead to completely lift the isolation FOREVER on April 15. Yippee!! Dr. Suterwala thinks being around other kids may help some with the eating and speech issues. He did caution us, however, to be careful of comparing Truman to other kids developmentally. We knew that and know that, but you know we won't be able to help ourselves.

Wednesday, April 2, 2008

Team Truman Shirts

Hi All:

The tee shirts for our March for Babies walk have been designed. They can be bought through this link:

Also, if anyone is still interested in sponsoring our walk and benefitting March of Dimes, you can do so here:

Tuesday, April 1, 2008

Who needs toys ...

... when you have boxes and bags?