Tuesday, July 31, 2012

I got to see my grandma and grandpa again! The last time I saw them, I was very small, and they couldn't even hold me.

I love snuggling with my new little friends!


I love sitting in my new bumbo chair. I feel like such a big boy. And I love being able to see all around.

We're still working hard on feedings without the Gtube. Currently we're having a hard time. There are lots of ups and downs in this process. Owen gives it his all, but has a hard time consistently consuming things via the bottle or the breast. Its hard to watch him seemingly want so much to eat in the natural way, and not be able to do so successfully.

We have a speech appt today at kosair. We meet for the initial first steps meeting on Friday. The nutritionist will be present. We can't wait to get started. We're hoping for steadier progress soon.

Yesterday, we had a hearing test. Owen previously passed the hearing test before he was discharged from the hospital. The repeated test was recommended due to risk associated with antibiotics that he had while in the NICU.  Owen was scheduled for testing yesterday based on his age and not his corrected age, so the procedure was a little challenging for him. They were only able to complete one side. He passed on that side. And he's scheduled to return in October for more developmentally appropriate testing.

Next Monday he goes back to the pediatrician. We're eager to see his new weight and length. 

Saturday, July 21, 2012

 I love snoozing

 I'm still working hard to master the art of holding my paci in my mouth

It's been a good week! Owen had his outpatient speech appt at Kosair and it was helpful. That same day, we had an OT come out from First Steps to do a discipline-specific eval, and she said within the first 10 minutes that he qualifies for first steps services. We're so happy! ...so relieved.
We got a lot of instruction on ways to increase Owen's positive oral experiences and ways to help him be more organized with his oral motor functioning. Since then, he has been doing better with his bottle, and tonight he even did a little breast feeding!

This coming Tues, he goes back to the Kosair speech therapist. It may take a bit for first steps to get started, so we're going to stick with that in the meantime. And we'll probably make an appt soon with the lactation consultants there at Kosair. We also look forward to having a nutritionist through first steps.

 He weighs 9lbs and 11oz!! He's 21.5 inches long!

This coming Wed, he goes to the Gtube clinic. We had a scary experience with the Gtube the other night. Once a week we have to check the inflation level of the balloon inside that holds it in his stomach. If you don't hold the button on the surface in place, as you deflate the balloon inside to check the level, it will come out. --- IT CAME OUT! Somehow we remained calm enough to get a new one from the closet and get it back in place. We called the next day to ask about it and make sure we didn't need to be watching for anything. They said it sounded like we did everything right.

We visited one of the daycares that provide care for little ones with special medical needs. It was very nice and the people who work there seem great. They made a big deal out of him and said they can’t wait to spoil him. We got things started with registration there, and received info on how to apply for Medicaid. Again, Humana doesn’t cover it, and even if we somehow had the money to pay for this kind of care, they don’t take private pay. So here in the near future, we’ll be taking a trip to the good ole L&N building….fun, fun.
We’re also going to check out the other childcare center.

Wednesday, July 11, 2012

 I love watching my mobile!

 Chillin with dad is cool!
 Fast asleep in my relaxing glider.
 I am really good at loading my diaper.
 ...Today it was a bit overloaded, as a matter of fact, and the whole changing experience was exhausting. It took all the energy I had. -I took a 30 min nap on the floor.
 I love sleeping in my daddy's arms!

I'm so happy!!

Owen weighed 9lbs and 1oz at the last appt on Monday. He's doing a nice job of gaining steady weight. He's still 20 and a half inches long.

Since the swallow study, we tried moving too fast with jumping in and consuming thinner fluids. Mister Owen wasn't ready for that, and he's ultimately taken a step backward in even how much he now takes of the thicker formula. Mommy got over eager and wasn't aware of his needs with a slower process. Today, I've grasped the reality that feeding isn't going to come easy for him; even with the absence of reflux and aspiration. The Gtube is going to be a lengthy part of our journey.

These last two days, I've worked really hard to get some help with his feeding needs. Perhaps, I would have been more realistic with my ideas in changing his feedings had I received some professional support and guidance. Without first steps in the picture, it has been a challenge to find the right services for him. Apparently good help, outside of first steps, is hard to come by for an infant. But persistence pays off and we have an outpatient appt on tuesday with a speech therapist at kosair. First steps may also do a discipline-specific evaluation to see if he qualifies in that way.

We're also working hard to figure out the options and make plans for childcare when I return to work. There are two places that work with little ones who have special medical needs. This of course comes with its own set of obstacles to get set up and get covered. Not a big surprise, I guess, that Humana doesn't cover this need. Only a few insurance companies do. The daycares mainly bill medicaid...We've got some more exploring of resources to do.

Apart from all the frustration with needs and limitations with services/resources, Owen is doing great! He makes steps every day. He was rubbing his eyes today when he was sleepy. He put his sweet little hand up on his bottle today to help hold it. He’s been looking over at us when we start talking to him. He tries really hard with great determination to get his paci back in his mouth when it has fallen out. He doesn’t have that mastered just yet, but boy does it take him awhile to give up. He also plays more with his little toys. He's getting stronger with tummy time. He’s such a wonderful little baby and such a joy to take care of everyday.

I was reading the report from the first steps eval. It had a section on his history, and wow, how far he has come. It was a different perspective to see a listed version of all that Owen has faced since his birth, and to reflect on all his accomplishments. Its still hard sometimes to believe that for such a little guy, he has an amazingly strong fighting spirit. We love him so!

Friday, July 6, 2012

More Good News!

The swallow study went well! Owen is no longer aspirating and can now have breast milk and regular formula (without rice cereal to thicken it) in his bottle. He can also be breast fed.

This is a big step in the direction of not needing the gtube.

So far, he has to continue with two bottles per day. He has to stick with the same amount per bottle and same time frame for feeding with the bottle. The only change, at this point, is that he can have thinner liquids.

We'll keep the updates coming.

Bottle feeding always wears him out. We can't wait until he gets to enjoy it more.  

Tuesday, July 3, 2012

Good News!

We had the appt with the neonatologist, and they completed the first steps evaluation. Owen does not meet the criteria of need for first steps services. In a couple areas of the eval, he showed some need, but not enough to warrant services, and nothing recognized outside the norm for a preemie. He has some minor muscle tone issues, but nothing that they feel like he won't continue to work through as he progresses developmentally. Based on his corrected age, he is on target with skills like grasping objects, tracking objects with his eyes, having centered muscle movements (like bringing his hands together at his chest), responding to interactions with others by cooing and making eye contact, responding to sounds, etc.

We are so relieved that he is on target with his corrected age. They shared things we can do at home to help him continue with progress. They also explained that he will be reassessed at the next appt in 2 mos to make sure he is still on track. The downside of this is that without first steps, there is no speech therapist and no nutritionist to assist with feeding. The first steps evaluator explained that his needs with feeding are medically, and not therapeutically, necessitated. Therefore, these services cannot be attained through first steps. We followed her explanation with “well then what” questions, and we asked the doc about having another swallow study. If he’s not aspirating any longer, than we feel he’ll be fine with feeding; as long as its with thinner liquids.

The swallow study is Thursday! We’re hoping, praying, and keeping everything crossed, that he has developed enough, and recovered enough from the reflux, to be clear of any aspiration…. We’ll keep the blog updated!

He weighs 8lbs and 5oz. He is 20 and ½ inches long. His head circumference is fitting. He’s moving in the right direction, and pretty quickly, on all the graphs with the normal developmental curve.  We’re so excited to see him moving along. He’s such a strong little guy!

 Finally getting to meet or be held by those that love him....