Bentley is now 7 months old:)

Bentley is now 6 1/2 months old!!!!

We just can't believe how fast time is FLYING!!! Our baby girl is not 6 1/2 months old:) She's rolling, cooing, laughing, eating carrots, holding her bottle, and sitting up!!! She's getting so big. At our last doctor appointment, last week, she weighed 13.95 lbs. Also, she is now 26 inches long. We have a road trip to Children's coming up in a few weeks. However, we are not expecting any surprises. She is doing sooooo good!!! I'm also happy to say she sleeps 8 hours straight every night!

It seems that all we went through to get to this point, namely the first month of her life, is like a foggy memory....and looking back...I think..,"Wow!" We are such a stronger family having experienced every day, even the cloudy ones, to the fullest. Bentley seems to love every moment...she's such a GREAT baby!!

Bentley is now 3 1/2 months old!!!

Things could not be better!!!

She had a visit with her Cardiologist from Children's last week. They did an echo of her heart and it showed that the right side of her heart is not dilated. So, for now, we are in the clear for heart surgery. His main concern is the rerouted pulmonary vein to her anomalous superior vena cava. (If you don't know what all that jazz means, don't worry, it just means that she has the potential for an enlarged heart) But he said he doesn't feel that this will be a great concern ever. Also, her VSD has diminished greatly. SO YEEEAH!!!

She is up to 10 lbs 8 oz. And she's 23 inches long. Shawn and I are doing great and loving every single moment that we get to spend with her.

Bentley is now 2 months old!!

We just can't believe it!! Bentley is 2 months old. Last weekend she got to meet her Uncle Jakob for the first time. She could NOT stop grinning at him.

She is still on the small side at 7lbs 10 oz. The home health nurse is coming tomorrow to check her weight. I bet anything she has passed 8 lbs. Also, we have a big check up with her neonatologist in Little Rock this week.

We are taking her on her first trip to the river (weather willing) next weekend. Just a day trip, she's a little young for camping yet. Give her about another year and we will be all over those woods:)

She just gets prettier every day. I think Shawn and I have a load of trouble on our hands in the future.

new pics

Bentley is doing great!!! She is not gaining weight as the doctors would like but I'm sure she'll take off like a rocket soon. She is up to 7lb 10 oz. She smiley, funny, and little Ms.Personality.

The happiest girl in the world

Bentley's check up with the surgeon was this week. Doc was very impressed and said that "it made her day to see how well Bentley was doing." Bentley did as good as she could do spending 6 hours in her car seat on the way there and back. We have several more follow up visits in the coming weeks.

It feels so good to be home!!! Bentley just needs to grow, grow, grow.

It feels so good to be home

Bentley is doing wonderful!!! Shawn and I are actually starting to feel like real parents. She sleeps good at night and is eating like a champ. We are still having to thicken her milk and add extra calories to it. The finished product (bottle) is about the consistency of yogurt. Yumm!! She absolutely loves it.

She has a ton of follow up appointments at Childrens and NWAPC. Thats ok. I would prefer it that way so we can stay on top of her overall health.

She is starting to love her wedge. I just can't believe she sleeps 5 hours in a row at night.

Also, I still can't believe that we are finally home. These little moments are what life is all about.

Valentine's Day 2010

We got the best Valentine's day present ever!!! We got to come home!!!

We had no idea that it would be yesterday. It was such a surprise. The hospital called us and told us we were being discharged that morning. That moment was the happiest moment of my life. So, we have been home for 24 hours now. It fells weird but wonderful. I finally get to hold my girl without monitors, alarms, and wires. She is snoozing on her boppy and it is the best site ever!!!

We can't thank everybody enough who helped us and prayed for Bentley every step of the way. Words cannot express how appreciative we are.

Well, I'm off to whip up Bentley's bottles for tomorrow.

Saturday, February 13, 2010

Bentley is doing MARVELOUS!!! We are soooooo blessed. After she woke up from anesthesia yesterday she downed a whole bottle. The nurse practitioner told us that, "That never happens, ever!" Yes, our little girl IS a super-hero. They are talking about us coming home next week. We are so excited but we are not exactly getting our hopes up.

Bentley had to sit in stationary car seat for 3 hours today. They make babies do that to prove they can tolerate the ride home. She passed with flying colors.

She is also adjusting nicely to her wedge. She'll be sleeping on that for the next 6 months or so. Hopefully she will grow out that awful reflux.

Friday, February 12, 2010

Bentley's procedure was an absolute success:) The surgeon was very satisfied. From start to finish it only took about an hour.

She was NPO for 13 hours before hand. She was absolutely starving when she woke up from anesthesia. She took a whole bottle within a couple of hours after waking up. We are so proud of our strong and resilient baby girl. We cannot wait for her to grow strong enough for us to take her home.

We have gotten so many compliments on Bentley. Her surgeon even compared looking at her to looking at a fish bowl. It's just hard to turn away.

It's even harder to walk away at the end of the day. Just a little bit longer and hopefully this past month will become part of a story that we tell Bentley as she grows up. We'll tell her about what a strong, adorable, beautiful, and lucky baby she was.

Ms.Bentley is doing well. We are just awaiting her procedure. She is first in line tomorrow in surgery at 7:30. After she is extubated they will let her arouse on her own. Once she has bowel sounds they will let her start eating small amounts and then work her way up to a full bottle. It might take quite a while to get to that point because she will have a very sore throat.

Thursday, February 11, 2010

Bentley's dilation will be sometime Friday morning. She is doing great today. We are just biding our time till the procedure. Hopefully, it will help her out tremendously. All prayers are still welcome.

Tuesday, February 9, 2010

Bentley's barium swallow showed that she does aspirate thin liquid. It also showed a severe stenonis/stricture at her surgical repair site. However, she does not have a leak at the surgical site.
We can solve the aspiration issue by thickening her milk to a honey consistency with simplythick (a thickening product that does not affect the nutritional value of her milk).
Her esophagus looks like a stopped up drain. The stricture is so tight that all of her food hangs out above the repair site or refluxes back up. She is smart though. When she eats she sucks, sucks, sucks, and then takes a nice long pause to allow her throat to drain. Even the OT commented on how smart she was to pick up on her own body's queues to stop and take a break.
The stricture needs surgical attention. The surgeon will have to go in and dilate Bentley's esophagus with a balloon. This will happen either Friday or Monday They will not do the procedure on an infant under the age of 1 month. Bentley turns 1 month on Feb.13th. She will have general anesthesia for this procedure.
Bentley is a "silent aspirator." She only coughs every now and then to let us know there is a problem. We are so glad that the doctor ordered this study and didn't send us out the door. We pretty much had our bags packed and had even said good-bye to some of the staff. It would have been terrible to get home and Bentley develop pneumonia. JUST TERRIBLE!!!

So here were are and here we will be until our little girl is healthy enough to go home with mom and dad. She will definitely need a lot of tender loving care and special attention when she eats. I put a picture up of the wedge and Tucker sling that she will have to sleep in and hang out in until the doctors tell us that her reflux is no longer severe. It could be 6 months, 8 months, less, or more. There is no timeline. It is impossible for us to even begin to predict what it will be like in 4 months let alone tomorrow or when we are going home. She will have follow up with her cardiologist, neonatologist, pediatrician, and surgeon throughout the next few years for all of these issues. And let me assure you they are the BEST at what they do.

We are still SOOOO LUCKY when it comes to Ms.Bentley. Most TE fistulas/esophageal atresia babies go home with gastric tubes and don't eat by mouth for months. Her favorite thing to do is eat and suck her paci:)

She's an absolute angel.

Monday, February 8, 2010

Well, it looks like we might not be coming home on Wednesday. Bentley coughs when she wakes up and sometimes after she eats. The doctor is concerned that she might be aspirating. The OT, her nurses, and us are pretty confident that it is just really bad reflux. Tomorrow we will have a barium swallow done to see what's going on. Also, it won't hurt to take a look at her esophagus and see how her surgical repair site is healing. Hopefully, we will get good news.


Other wise Bentley is doing great on her feedings. She is up to 63mL.

Today was a GREAT day!!!

Bentley is doing amazing!!! The picc line is out and she is taking her goal, 58mL, in perfect time. They want her to do this for a couple of days and then we can go HOME!!!! Yep, I said it, HOME!!!!! I think we'll be going back to Fayetteville on Wednesday.

Shawn and I could not be more excited. We can't wait to show our baby girl our wonderful home, her awesome nursery, the doggies that we've missed sooo much, and all of her toys and books. It is definitely time to CELEBRATE!!!

Friday, February 5, 2010

Bentley is doing great!!! She has a schedule as follows for meals: 2am, 5am, 8am, 11am, 2pm, 5pm, 8pm, and 11pm. She is taking 45mL per feeding. Today was the best day she has had yet. Our goal of 60mL is getting closer and closer. She has to eat the 60mL consistently for three consecutive days. I do believe the light at the end of the tunnel is getting closer.

We cannot wait to take our baby home. We look forward to holding her without IVs, lines, cords, monitors, and alarms. When they do tell us we can take her home, Shawn and I will literally burst with joy.