I'm a cubs fan!

Look how I've grown....

 

Owen weighs 12 lbs 9.5 oz! He's seven months old today. His corrected age is officially four months. That means its time to try food! So far, he seems to like his oatmeal cereal. The nutritionist and the speech therapist say some babies like Owen skip right over the bottle, and move into spoon feeding and sippy cups.

 

 

I'm going to be a rock star.

I'm still good at nap taking. I think I get that from my mom. 

My new high chair is great. Its very comfortable.

 



My eyelashes are so long. I'm hopng someday soon my hair catches up with that length.

 



I play really hard. Sometimes I get so sleepy that I fall asleep in the middle of my play, and I just can't let go of my toys.

 



I'm getting to be such a big boy!

Both of my grandmas do make me smile :)

Owen is doing well. He's doing great sleeping through the night.He's working hard on his exercises to improve his oral motor skills. At this point he's not as fussy during that time, and he even smiles a little bit. That's exactly the goal we've been working on; to help him have a more positive oral experience.
His gagging episodes are better. They still happen, but not as frequently, not as long, and not as severe. The Zantac is helping.
Owen is set up to start Sproutlings on the 10th of Sept. We're still waiting to hear about Medicaid.

 

 

 

 

Brevon is already introducing me to spiderman cartoons!

I'm so relaxed! Dad knows how to help me chill. And I do love my sleep sheep!

Owen started his new feeding schedule last night. He slept through the night from 11pm to 6am. It was great! He woke up in a happy mood this morning. He did tummy time, rolled from his side to his belly and from his belly to his side. He enjoyed play time on the floor for longer than usual. He took some of his 8:30am bottle. He went back to sleep for his feeding via the Gtube afterward. He wasn’t as fussy during the afternoon; which has been his new trend. So far, it looks like a good night’s sleep is going to make a big difference for him. We’re hoping that solid rest will help him be more organized with his suck, swallow, breathe skills, and he will be more successful with bottle feeding.

We’re working on new exercise strategies to help him improve his feeding skills. We’re back to only doing the bottle two times a day again. But we’re doing more positive oral exercises. The nutritionist and the speech therapist are wonderful! They’ve both got a lot of experience, and are helping to explore options for increased success.

Owen also started Zantac yesterday. He hasn’t been on that since before the Gtube. The gagging episodes appear to be reflux; minus the spitting up of course with the nissen. They say it will take a week to see the effect of the medication. We’re hoping that eventually it helps him be more comfortable and more open to feeding experiences.

He weighs 11lbs and 3oz!! –Thank you, Gtube, for his steady growth. And brain development!

I went to the good ole L&N building today. We have to wait 7-10 days to receive the determination on his eligibility for continued Medicaid coverage. I sure hope he’s eligible. We don’t have a lot of childcare options otherwise.

Tomorrow, we’re visiting Sproutlings. The First Steps people say its so great it will “blow you away.” We want to be sure that Owen is in the right hands during the daytime hours. Its not on the way to work like Kidz Club, but it sounds like it’ll be a place where we can be confident he’s getting the best care.



Owen weighs 10lbs and 15oz!! He's 23 inches long!!


He's been doing a little better lately with his bottle feeding!


We met with the nutritionist and have some new plans. We're working to help Owen sleep through the night. Its important for him to be undisturbed through the night in order to help him form healthy cycles with sleep. It is also important with my upcoming return to work.


Owen presently gets feedings at 10, 2, and 6; around the clock. Each feeding runs for 1hr. And he's currently at 140ml per feeding. Before his 10am and his 10pm, he's given the bottle first. However much he takes from the bottle is subtracted from the amount that goes into the pump.


We can't yet discontinue his 2am feeding due to his difficulties with tolerating volume increases. If we eliminate the 2am, we would have to add the missed amount from that feeding to the other feedings. That would be too much of an increase in the other feedings for him to tolerate. So the plan is for him to get his two formula feedings on a continuous feed throughout the night from 11pm to 6am. Then he'll still have breast milk feedings at 8:30am, 12pm, 4pm, and 8pm.

We have a new plan for his weekly volume increases too. We hope the slower increase will help him adjust easier and not have the gagging episodes.


We're also going to increase the bottle feeding from 2 x per day to 4 x per day. Friday we meet with the speech therapist. Hopefully, we can continue with his improved ability to bottle feed.

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. 

 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.

 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!