Chloe's check-up at ACH

Chloe went back to ACH for an ENT checkup today. She weighed 8 pounds 4 ounces and was almost 20 inches long!!! Her mom and dad have been doing a great job of taking care of her! Here’s a summary of the visit:

The nutritionalist went over the feeding method, amounts, and types of milks that Chloe is getting and then advised that the caloric intake needed to be increased by mixing larger amounts of formula to water and to breast milk. Chloe must continue to get 8 bottle feedings a day and continue to increase the size of each feeding every week. To see if Chloe could take more in less time, she suggested trying another nipple type that hadn’t been tried since Chloe’s first week. She also suggested trying a soy formula to see if it helped with the reflux, but ok’d any formula that they thought worked the best. Chloe will be on this schedule for several more months as gaining weight and growing is the priority.

Nurse Emily gathered lots of information on Chloe’s “noisy” breathing and sleeping habits. She told us that Chloe’s surgery would not take place until she was about a year old. Chloe will have to be at least 20 pounds before the surgery. She also needs some time for the jaw to grow. The surgery will involve using only 'Chloe parts' and involves building a palate with exisiting tissue and muscle layers. The surgery will take 2.5 hours and if all goes as expected, Chloe will spend only one night in the hospital (YEA!) Before the surgery, she has to be completely off the bottle and able to be fed by a cup without sucking. She will have to wear NO-NO’s for three weeks afterwards – these are boards on her arms to keep her elbows from bending so she can not touch her mouth or put anything in it (I thought this was the worst news of the day!)

Dr. Buckmiller examined Chloe and said she would have no problem correcting her mouth. She suggested a wedge for Chloe to sleep on for her reflux and her breathing. The wedge is a large foam wedge with straps that hold her in place and have a hollow spot for her bootie. She also advised that Chloe should sleep on her side as her tongue goes back when she is flat on her back. She wants to see Chloe again in a month and then every two months after that.

This appointment didn’t include the genetics or physical therapy folks, but Mom and Dad got the contact information to pursue those follow-ups.

Chloe took a bottle and then slept all the way home! This image shows her on the new wedge after they got home.

About this blog...

I want to say thanks to all of you who have prayed for Chloe and her family, who have provided food, snacks, gifts and hugs during the hospital stay and who continue to support them at home. Our memories of Chloe's first weeks will be filled with all of you and the overwhelming love we felt. God bless you!

This blog was created with only one intention - to share the events of Chloe's birth with her great grandparents who live far away. When her birth wasn't typical, the blog filled the need to quickly let so many friends and family know what was happening. I realized many of you were actually checking it often for news, so I tried to give daily updates. I've been asked if the blog will end. No, but I will only update it when I have new information or pictures and hopefully it will be less medical information and more normal baby and growth info.

I'm adding a few more videos and some pictures of Chloe from this weekend. She continues to be fed by only Mom or Dad every three hours and is thriving. Chloe does get out of the house-she's visited a few restaurants and even been on quick shopping trips. She maintains her sweet nature and really doesn't fuss very much. She does go back to ACH for a checkup this week so I'll have new information to post at that time.

Post from cell phone

Still no internet at home so I'm testing out a post from my cell phone. This image was taken on Natalie's phone and sent to me.

Eight Weeks!

Chloe will be eight weeks old tomorrow!! She is doing quite well at home-eating and sleeping on schedule. She had another scan on her hips today and the report was that it looked just fine. She doesn't return to ACH for a check up until next week.

Sorry there have been no pictures or updates. I've been without internet service at home, but a new provider should correct the problems this week.

Out to Eat

Chloe made her first public appearance in a restaurant on July 4th. As you can tell it wasn't very thrilling for her, but her parents enjoyed the chance to be out in a normal fashion. Chloe was very well behaved, but did make quite a messy diaper for Dad to deal with on the way home! She didn't seem to care about watching fireworks but did spend the day in the lap of grandparents. She made another outing on July 5th to attend a family cookout with Adam's family.

Ready for Bed

Chloe is bathed and ready for bed. Tomorrow is her first July 4th holiday!

At home

Chloe has settled into a good routine at home. She is taking 8 bottle feeds a day and consuming the recommended amounts of milk. She still sleeps alot and is small, but holds her head up with more strength than at the end of my last visit (6 days ago!). The dogs ignore her, but Pearl finds the pacifers to be a great chew toy. Pearl was also discovered eating a tube of Butt Creme that she had stolen and taken to her bed. Dad went back to work this week and of course, Chloe kept him up most of the first night.