Happy Holidays

Chloe is still smiling from all the holiday fun! Her Daddy went back to work, her grandparents left town, and she went back to therapy today. Hopefully she'll rest up and adjust to life without a constant audience!

Santa delivers!

Santa gave Chloe her first laptop and she was thrilled. She didn't put it away until she had looked up today's sales numbers (like Dad), enjoyed some music and checked on her blog! She's had a fun day with lots of attention , new toys and books, and smiles for everyone. She wishes all her friends a Merry Christmas and is grateful for the continuing interest and concern for her development. She is doing great!!

Chloe and her sisters waiting for Christmas

Yummy Carrots??

Chloe is getting to taste food and obviously didn't like these carrots! So far she hasn't swallowed any baby food on purpose, but she will learn. At her Doctor appointment this week she weighed 15 lb 15 oz and measured 25 inches tall. The doc was pleased with her progress and says she is on track for surgery at 12 months old.

Health Update - 6 mo old.

Chloe is up to 15 lbs, 9 oz. She wears splints every night while she sleeps and she continues going to physical therapy twice a week. Her hands open more every week and her fingers now grab and hold objects. The splints make thumb sucking difficult so she now has socks over the splints. (or Mom and Dad put the splints on after she goes to sleep!) She still sleeps on the wedge to keep her airway open and to reduce reflux. She's drinking good old soy formula and just beginning to taste some baby food veggies. She doesn't know what to do with the food so the result is chokes and gags. She's had a few ear infections but is still on schedule to wait to get tubes in her ears until the cleft repair surgery. She goes back to ACH this month so we'll have more news later. She has a very happy disposition and loves to laugh.

Thanksgiving

Chloe's happy family! Chloe spent the Thanksgiving holidays with both her dad's and mom's families. See the First Thanksgiving pictures!

Chloe is on her way!

Chloe is on her way to see us for the weekend!

She's sitting on her own!

This weekend, Chloe began to sit unsupported. Her mom reports that she is wobbly and doesn't sit for long, but it is exciting! She turned 6 months old this past week and it is a good time to say thanks again for all the prayers, attention, and help that she received when she was born. She's making great progress!

First Tooth

If you look close you can see her tooth!

Chloe still loves to kick!

Chloe spent a few days with us and enjoyed the extra attention of two very attentive grandparents. Her grandad strolled her all around the mall, never stopping but for a second or two as Chloe would whine designating for him to get moving! She proudly sat on Santa's lap without a tear and even came away with some of Santa's beard in her hand! This week she weighed 15.1 lbs and is still making obvious progress with her hands. Poor thing, she has another ear infection which makes the feeding painful and stressful. She is cheerful at all times (except feeding) and very alert to what is happening around her. She loves the TV and reacts to music, football, and cartoons. She pulls off her socks and plays with her feet and still cuddles up sucking her thumb when she gets sleepy.

Chloe enjoyed a visit from Honey!

Chloe has a tooth!

Chloe's mom discovered a sore on her thumb and thought the splints had caused it. It turned out to be caused by a new tooth that interfered with Chloe's thumb sucking! In the same day, we celebrated her first roll over, so we are enjoying her progress in development. Her hands continue to be more open and I watched her reach and attempt to grab a toy. She actually pulled the handle to start the music in her bouncy seat using her thumb and first finger - I was impressed but not certain it wasn't an accident! She laughs a lot and still loves to kick those legs.

Chloe holds her head up in Tummy Time

Chloe in a big girl stroller

Chloe took her first stroll in the regular stroller without being strapped into the carseat.

Halloween Nap

Chloe is having better feeds and is over 14 pounds now. Her fingers are better and she continues the physical therapy and splints. She giggles and responds to attention. As you see in this image, she now regularly enjoys her thumb when she gets sleepy.

Boo! it's a caterpillar!

Chloe spent her first Halloween as a caterpillar. Actually she only spent part of the day as a caterpillar. The costume was hot and she got fussy!

Chloe is 5 months old!!

Chloe is feeling better after new medicine for ears and adjusting her feeding. Hopefully she'll get back on track with her weight gain. In the last few days she has started sucking her thumb. It seems to get her right off to sleep when it is naptime. She continues to be happy and sweet and all around precious!!

Busy Girl

This week Chloe went to a jewelry party with her mom one evening and went to a pumpkin decorating party the next evening with her best friend Barrett. She likes to go places and stays in a good mood most of the time.

Last weekend Chloe and I watched the Razorback game at her house. We had a blast and even though she snoozed through portions of the game, she is quite the football fan. We started out in our Razorback gamewear, but before it was over we both had changed clothes twice. I guess this is all part of her razorback fan training! She is very aware of the TV and music - even kicks and grins at it. Needless to say, I loved every minute of my private time with her. She is so very special!!!

Not much progress with the feeding...she only gained two ounces this week so Mom is seeking help from the doctors. She's tried all their past suggestions and nothing is working. Chloe doesn't want to take a bottle and throws up what little she gets. She is happy except at feeding time and doesn't seem to be sick or in any pain. She sleeps all night and takes naps during the day.

I'm trying to catch up on posting pictures and videos so keep checking as they are coming. Chloe will be 5 months old on Monday.

Playtime

Chloe gets a few moments to explore a new toy. Even though her development is slower than we'd like, she is progressing. Besides the physical therapy visits, she gets workouts at home with her moma. This has been a bad week for feeding with continuous reflux combined with a disinterest in bottle time. However, looking at those chunky cheeks and plump legs it is hard to worry about her not getting enough milk! She weighs in on Friday.

Watching the HOGS!

Chloe loves to watch TV and she especially likes Razorback Football!

Chloe Relaxed on the Plane

Chloe was a great traveler and I can hardly wait until our next trip. Back at home she is back in her routine of physical therapy and life with Retta and Pearl. This weekend she watched Retta run in her first Weiner Dog Race.

Chloe is 4th in line!

Here we are...I've had my mother, my daughter, and precious little Chloe together for a few days and it has been memorable!! Many of our plans were changed after Chloe had to go to the emergency room with fever! The four of us spent several hours on Saturday night there and it certainly was not the night-on-the-town I had planned for the four of us!! After tests, and medicine and tears, Chloe got to go home for rest and medicine. She is better now, but still fighting a low grade fever. Chloe believes it is REALLY HOT in Florida!! Unfortunately, her only swim was in the bathtub.

The Greats

Great-Grandbaby Chloe with her Great-Granparents!

Chloe is in the air again!

Chloe flew to Florida to see her Great Grandparents for the first time! She was an angel and slept most of the time on the planes and absolutely loved strolling around the airport terminals. During the last leg of the trip, she got a little impatient riding in her carseat in the backseat of a car all by herself. After fussing didn't get her anywhere, she threw-up forcing us to stop and get her out. Her mom rode in the backseat singing songs to her the rest of the way!

Four Months Old

Chloe has finally reached the point where she is getting too many feeds, so the bottle per day count can be reduced. This is great news as it reduces the concern for her growth, but also means a little more free time in the day for both Chloe and Mom. Mom reports that Chloe has discovered the TV and can be caught fascinated by it at any time she's in the vicinity. This prompted the recording of suitable shows for a 4 month old and to limit Chloe's viewing of daytime trash shows. Unfortunately, wet weather kept Chloe from attending her first Razorback tailgate, but she had lots of special visitors during the weekend.

She still goes to physical therapy twice a week. She's not holding her head in some positions like she should, so she gets a workout! She continues to wear the splints while she sleeps. Her fists are much more open and now would enable her to grasp objects. She's not trying to reach and grab yet.

I recently visited the NIC unit where she spent her early weeks and was reminded how far she has come. Four months after her birth I am profoundly grateful to those nurses and doctors who gave her a path for recovery. I'm also quite proud of Chloe's mom and dad for their dedication to her.

Our little fat girl!

Chloe continues to gain in spite of terrible reflux and has made it to 12 lb 7 oz!!! She is laughing and cooing. She's also shown signs of being spoiled by her mama. She will fuss and completely stop the minute that mom picks her up.

She does have bad days where she doesn't want to eat and then spits up what she does take. Her mo m said today was one of those bad days. Even after physical therapy, she didn't rest much. No matter how bad the day seems, it is a blessed day because she is at home!

This weekend will be a memorable one for Chloe as she will attend her first Razorback tailgate party! and next week we'll report on her travels to Florida to see her Great Grandparents!

Flower Power

Labor Day Report

Chloe weighed in at 11 pounds 11 ounces and has progressed on her growth chart from below 5% of where she should be to over 25%. She has really plumped-up! She's got the most beautiful chubby cheeks and thighs! On my visit this past weekend, I noticed that her hands were noticeably looser. Her fingers are not clinched as tight and it is much easier to spread out her fingers. Her arms are often down by her side now. She smiles, coos, and laughs, but it is almost impossible to catch it on camera.

Even though she is strapped to the wedge and wearing her splints, she continues to sleep six hours at night and has to be woken to begin the feeding schedule.

Chloe's Best Friend

This is a picture of Barrett during one of her visits to see Chloe at ACH. More recently, Chloe and Barrett dined at Bonefish Grill together!

Chloe's new friend

Chloe visited her new friend Jackson when he was only a day old!

Take Cover! Chloe is eating

Here is Dad feeding Chloe at the crowded waiting room at ACH. We held our breadth that she wouldn't have a projected throw up while we were there. Always prepared, Mom had a diaper bag weighted-down with extra towels and clothes! Chloe made us proud by finishing her bottle without any problems and then slept through the first half of her exam. We think she was worn out from the tantrum of the previous evening.

11 Pounder!

Well our little girl is getting big FAST. The doctor, nurse, and nutritionalist were thrilled with Chloe's progress and said that she had far exceeded their expectations and was moving up the growth chart. This was such a relief for mom and dad as they have certainly worked hard for Chloe's growth. She also got 'high marks' for her ability to sleep all night without breathing problems. (Wouldn't it be great if we could all get such praise for sleeping and eating?!)

Chloe gets Mad!

Her mother says it is the worst and only big tantrum that Chloe has thrown and she threw it at me! Having not seen her in two weeks, I grabbed her up for a big hug and it did not suit her. She got red-faced mad and threw a fit. Even her mom's soothing didn't help and she finally settled down when she fell asleep(see picture). This is her first showing of spunk and it makes me proud! Actually, I think she was grumpy because she had gotten hot riding in her carseat, but I have accepted the blame and shame of her first fit.

14 Weeks Old Tomorrow

Chloe will be visiting for another ENT doctor visit at ACH on Wednesday, so there will be new pictures and an update coming soon. Last week she started seeing an occupation therapist and a physical therapist on a twice a week schedule. So far they have worked on making her new splints which are to be worn when she is resting. I think they want her moving her hands and reaching for objects when she isn't wearing them. They also will work on some "mid-line" problems - I'm not sure I have the correct terminology for this, but she always lays her head to one side and her arms are most often out from her body. She needs to be more centered.

She weighed-in last week at 10 lbs. 7 oz. so she continues to gain. Her feeding schedule is the same with more required ounces each week. She spits up frequently (this description is very dainty-she really throws up and often with some projection!) She sleeps on the wedge to help with with the reflux and to insure she doesn't choke. She still sleeps well for a six hour period each night.

Last week she visited her newborn friend Jackson on his first day of life. She was happy to just visit a hospital and not check in!

Chloe's First Swim

Chloe went swimming today! She really liked her cute swimsuit, but the sunscreen made her mad. For some reason, the more her mom put on her, the madder she got! It was overcast but she still squinted and just endured the brief water encounter. She is 13 weeks old today.

12 Weeks Old!

Chloe had a visit with the genetics physician at ACH and he was very pleased with the growth in her jaw and the opening of her hands. There was nothing in the genetic tests that point to problems other than the physical ones she has. He believes the theory that the small jaw caused the cleft palate and the contracture of her hands was from lack of movement inside Mom. He told Mom and Dad they could watch her developmental progress with the same concern as most parents.

The next day Chloe had her first appointment with the occupational therapist in Rogers. She was moved to the top of their priority list and will be fitted for new splints and a schedule for OT.

She has great problems with reflux but continues to gain weight. Numerous formulas have been tried as well as a different bottle. Nothing seems to change the condition.

At three months old, she is growing beautifully, smiling, and maintains a very happy disposition. So far she only cries when something is wrong and stops crying as soon as it is fixed! Mom is at home full time with a busy schedule. Dad gives late night or early morning bottle and can be caught sleeping with Chloe snuggled on his shoulder many nights. She is sleeping for a six hour stretch at night so Mom, Dad, and Chloe all feel better. Retta and Pearl don't bother her, but seem to sniff and check on her during the day.

Oh my! we are so blessed.

Chloe is growing!

Chloe weighed in at 9 and a half pounds so the feeding method must be working!

Happy Baby !

All Smiles

Chloe is now smiling! Her eyes are more alert and she reacts with a grin to attention and silly talk. I haven't been able to get a good picture of her smiles, but did catch a few on a video.

She loves the bright lights and the cart ride in Walmart and rides in the car without fussing. She gained weight last week so she is progressing. Mom and Dad are in a routine and both learning to get by on less sleep.

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.

She's a shopper!

Chloe is doing well at home...she actually made her first trip to Walmart today!

Chloe and Pearl

Pearl would love to lick Chloe in the face, but doesn't get to. She seems to just want to love her. This upclose encounter only happened because I had both of my hands on the camera. I was trying to take a pic of Chloe and with lightening speed Pearl took the opportunity to move in. She didn't lick-just got nose to nose. Last night Chloe was sound asleep in a bouncy chair on the floor and the dogs just ran and played without bothering her.

Chloe and Retta

Retta really doesn't pay much attention to Chloe but quietly gets in your lap even if you are holding Chloe. In this picture, she crawled up next to Adam while he was had Chloe. She didn't seem to mind being a footrest. Retta is a tiny miniature dachshund but compared to Chloe, she is big!

I'm Hungry!

This rare moment shows Chloe anxious for her bottle. She was NOT interested in another photo op!

All is going well at home. They are in a routine that revolves around Chloe's sleep and eat patterns.

Chloe goes HOME!

At the age of five weeks, Chloe is finally home! They had an uneventful trip, but discovered that stopping to feed a baby takes awhile. Mom reported to me that Chloe slept the first half of the trip and was contently awake during the rest of the trip. Retta and Pearl were naturally wild at the sight of Mom and Dad. After settling down, they sniffed at Chloe and were nervous when she cried. They didn’t jump at her or do anything frightening. Pearl did pull the bootie off Chloe’s foot and ran away with it!

Chloe goes to local pediatrician tomorrow and begins life at home. I’ll be visiting in a couple days so I’ll have pictures and an update on home life.

Our family has been blessed with the support and prayers of so many – God bless you!

Holding Hands with GrandDad

Going Home

It has been a wonderful day! Chloe has taken all her bottles, had a bath, been held for hours, took a nap with mom and had physical therapy with Dad.

However, last night wasn't too cool when she decided to stay up until 1:40 AM.

Chloe will be home with Retta and Pearl by tomorrow night!

Chloe Gets Out!

Chloe had made a road trip from the hospital to her grandparent's house by noon today. The quick release was a welcome surprise to Dad and Mom. So far she has enjoyed life without monitors and nurses. She's already fashionable, wearing a pretty dress that her Great Grandmother made for her to wear on this special day. She's had two good feedings and enjoyed a very restful nap since she's been in the real world. Her parents are smiling - real smiles!!

I can't think of a nicer way for Adam to celebrate Father's Day! We are all so excited and grateful that we aren't sure what to do. I'll update later on the plans for the real trip home!

Discharged from ACH !!!!!!!!!!!!!!!!!!!!!

Chloe has been discharged - details to come!!

Day 30 at ACH

Today was a quiet day with Chloe eating and resting well. Very little problem with the oxygen level today, so perhaps the medication they started late last night is helping. She really doesn't cry and fuss much - not around me anyway!

Mom and Dad are still taking care of her from 8 AM until 10 PM at the hospital. Dad keeps up with Chloe's stats and has even corrected a nurse for incorrect addition of Chloe's feed! Mom is still supplying all Chloe's milk. They look forward to having her at home and not measuring every drop of milk, weighing every diaper, and following a very strict schedule. Seriously, they are very prepared to care for Chloe on their own and have learned from a very talented group of nurses and therapists.

Since I've received some complaints about problems some readers are having commenting on this page, Chloe now has an email address. Feel free to send comments to her or her parents at chloeannek@gmail.com.

Dad gets a thumbs up!

Today was better for Chloe even though she is still having problems. She had good feeds and is up to 6 lb. 14 oz. They have not started any meds but spent the day watching her. Her oxygen did suddenly drop several times, but the cause isn't obvious. Just as quickly as it drops, she recovers. She is definitely stronger as she moves and lifts her head when on her stomach. She is adorable and hopefully soon she can meet some of you in person!

Chloes loves to kick

Chloe does love to kick. Just ask the poor nurse today who had to draw blood from her heel drop-by-drop while Chloe kicked! She is taking every bottle well and gaining weight so we thought she would go home this week. However, she's developed a problem that may be caused by reflux that lowers her oxygen level. There is no definite description of the problem or solution, but she seems to have milk or mucus where it doesn't need to be. Perhaps this is just another problem that comes from having two openings to one area that is used for swallowing, breathing, and sucking. I have faith that the docs and Chloe will figure it out. Maybe tomorrow I'll have a more medical explanation for you.

Meanwhile the sick babies continue to come to the NICU and well babies continue to go home. ACH offers much hope for each of them. We find ourselves blessed with very caring nurses every day and night.

Best hat in the NICU

Dad succeeded in getting Chloe to take a full bottle today! He's a pro now, so the nurses and the doctor are talking about her trip home. They will not have to room in for an additional two days since they have already spent so much time feeding and caring for her. She's had a little problem with reflux and her breathing which makes Mom and Dad nervous, but she is consistently gaining weight.