Kayleigh's New Puppy

Kayleigh had a nice first Christmas with all of her family members, and of course, Santa was very generous. Mom and Dad feel very fortunate, and know that the best gift of all was just spending time with family and their beautiful baby girl.

Kayleigh has had a lot of changes to her schedule since Mom started back to work a week ago. So far, she has been able to stay home through the holidays with the help of Grandma L. and Dad watching her a couple days during the week. With all the changes, Kayleigh hasn’t been eating as well, but Mom and Dad are hopeful that her feeding will increase again before she starts daycare next week. Sleeping through the night was also short-lived, and she is getting up once each night. Kayleigh went to the doctor yesterday, and she now weighs 10 pounds 4 ounces. The most impressive growth was in her height. She is 24 inches – up from 18.5 inches at birth!

Merry Christmas

Kayleigh wants to wish all of you a

Merry Christmas!

Fuzzy Head

Kayleigh is all ready for Christmas. She is keeping warm by cuddling next to her bears (and wearing their warm clothes). She is smiling almost as much as she cries now, eating very well, and overall doing great.

A couple of days ago, she slept through the night for the first time! That is very exciting for Mom and Dad (especially Mom). She also moved to larger bottles and is taking up to 5 ounces now. The best news is that she is down to only one medicine a day for her heart. She recently stopped taking two other medications for stomach problems and acid reflux.

Kayleigh's in Charge

Kayleigh had an appointment with the Pediatrician yesterday to get her first Synagis shot to help prevent RSV, a respiratory infection that is fairly common in children. She cried, but surprisingly, Mom didn’t. J She goes back to the Pediatrician next week to get her two-month immunizations – more shots. Kayleigh weighs just over 9 pounds now. She is still pretty small for her age, but she is gradually improving. She is now going through a phase where she cries after only drinking 2 ounces. She will only take more if Mom or Dad gets up and walks her. Mom and Dad are suckers and are completely aware that Kayleigh is now in control. Mom and Dad also know when Kayleigh flashes her smile, nothing else really matters.

Laughing Out Loud

Kayleigh enjoyed her first Thanksgiving with lots of family. She played with two sets of Grandparents, four Aunts and Uncles, one Great-Aunt and Uncle, twelve cousins, as well as some friends of the family. Needless to say, she is still exhausted and catching up on her sleep. Kayleigh also got to see her first snowflakes, but she wasn’t too impressed.

The highpoint of the holiday was hearing Kayleigh laugh for the first time! It was so sweet that it brought tears to Mom’s eyes. Kayleigh captured the hearts of many this week with her contagious smile and has many adoring family members. Kayleigh is very lucky to have such a large and loving family that cares so much for her.

Happy Thanksgiving

Kayleigh is drinking between 3 and 4 ounces at each feeding. This is a huge accomplishment and suddenly Mom and Dad have realized she isn't going to be this small for very long. We are so happy with her progress, but also want to freeze this moment in time because she is too cute.

Mom and Dad were also told that Kayleigh no longer has to be fed every three hours during the night. Since stopping the scheduled feedings, Kayleigh now sleeps 5-6 hours in a row. So, if you count midnight to 5:00 am as sleeping through the night, we are on our way to gaining back some much needed sleep.

Since Thanksgiving is this Thursday, we want to take time to thank all of you for your prayers and wonderful comments during the past 2 months. Just knowing how many people care about us and Kayleigh’s well-being has been so helpful during the rough periods. Thankfully, Kayleigh is healing, and we are enjoying watching her cute little smile and now listening to her coo. We are very fortunate to have her in our lives and couldn’t think of anything to be more thankful for this time of year. We hope you all have a wonderful Thanksgiving holiday!

Kayleigh says, "O - H - I - O"

Kayleigh was very excited to watch the Buckeyes beat that team up North today for the first time (25-21). She and her buddy, Brutus, had a long and busy day, getting up early to help Dad decorate the living room scarlet and gray, listen to TBDBITL CD's, and watch all the preview shows. By the time the game was on, she had a hard time staying awake. Dad tried to help by yelling at the referees and getting excited about big plays, but he couldn't manage to keep Kayleigh and Mom awake for the whole game.

In the end, though, we were all on the edge of our seats when the Buckeyes came back from nine points down in the 4th quarter to win the game and declare themselves Big Ten Champions.

After a relatively short celebration, it was back to sleep for Kayleigh.

A Happy Little Buckeye

Kayleigh was very happy to watch the Buckeyes win today (48-7 over Northwestern). She can't wait to watch her first Michigan game next week. Hopefully the result will be the same.

Kayleigh also enjoyed the beautiful weather while on her first hike. Mom and Dad took her to Highbanks Metro Park and saw three deer just ten feet from the trail. Of course, Kayleigh slept through the whole thing.

It was great to see all the comments on the last post. When there were no comments for several days, we thought no one was visiting the site anymore, but it turns out that Dad had one of the settings wrong. It's all fixed now. Keep the comments coming!

Play Time

When Kayleigh isn't eating, sleeping or CRYING, she enjoys playing with Mom and Dad.

Little Cutie

Mom and Dad have learned that Kayleigh loves her bouncy chair. A friend from work shared a calming technique with Dad, and it has worked wonders. Dad sits on the couch and constantly bounces the chair with his foot; as long as she is bouncing, she is happy! She also loves to swat at the daggling animals and smiles when they swing. It never gets old watching her explore her surroundings!

My First Boo

Kayleigh met several furry friends this week including her little pumpkin bear. She enjoys play time with her singing duck, Spot the Leopard and her doctor bear. Since she is too small for Halloween this season, we just got her a little sleeper with bears and pumpkins on her feet. Our little boo is doing well and continuing to eat better each day and she is spitting up less. She goes to the pediatrician again tomorrow for a weight check.

Happy Halloween! Don't eat too much candy!

Thank Heaven for Little Girls

Our little girl is getting stronger, eating better, and crying louder. She's keeping Mom and Dad (OK, mostly Mom) up at night with constant feedings, diaper changes, and general fussiness. She's getting stronger every day and is starting to lift her head up and move it from side to side. She enjoys her bath time, but has gotten into a routine of throwing up all over herself after she is freshly cleaned. Mom and Dad are really discovering the joys of parenthood!

Say Cheese

Kayleigh is a happy girl and wanted to let everyone know that she is adjusting well to home life and thrilled to be away from the hospital. She saw the pediatrician on Monday and has gained several ounces just since leaving the hospital on Friday afternoon. Feeding continues to be a challenge, but it is improving each day. She goes to see the Cardiologist on Thursday for a check up. All these appointments are forcing Mom to venture out on her own - a daunting task.

This picture of Kayleigh was taken shortly after a bath and a diaper changing. This girl likes to be clean! All the frustration of fussiness goes away when she hits you with one of these grins.

Stay Tuned

Stay tuned! A new post is coming soon along with a picture, of course. We'll continue to update the blog with new pictures and keep everyone up-to-date on Kayleigh's progress. We've been very busy lately just trying to feed her, change her diapers, bathe her, play with her, take her on walks...

Going Home

Kayleigh came home today!

Mom and Dad are nervous but very excited. This is the first time in a couple of weeks that she's been completely untethered, with no monitors or tubes hooked up to her. She is currently sleeping soundly in her swing.

Thanks to everyone for all of the thoughts, prayers, and gifts. We've received a tremendous amount of support from family and friends as well as many people that we don't even know, and we appreciate it very much. There will still be many challenges ahead, but we know now that we'll be able to handle them.

No More Feeding Tube

Yesterday, the feeding tube was taken out of Kayleigh's nose. She continues to improve her eating and no longer needs it. She is wearing clothes for the first time since the surgery.

She had another EKG and electrocardiogram done to make sure that her heart is working as it should. We haven't heard the results from that yet.

As you can see in this picture, Tigger is her best friend.

Making Progress

Kayleigh is doing much better with her feedings now. Today, she was able to take between 25 and 30 ml during each feeding. This is about twice as much as she has been doing since the surgery. The doctor says that she needs to be taking at least 45 ml consistently in order for us to be able to take her home. Hopefully, she will continue to progress at this rate.

As you can see from this picture, she's a little fighter!

Milestone Reached

Last night, Kayleigh's final IV was removed. That means that she no longer has any needles poking her. She now only has a feeding tube and monitors hooked up to her. She is also now able to use her left arm which was wrapped up with tape and a splint.

She is still having some trouble with feeding. She doesn't take very much from the bottle and has been throwing up about once a day.

Moving Day

Kayleigh moved out of the ICU yesterday and into a regular room. She is still recovering well from the surgery. The IV was removed from her leg, so now she just has the IV in her arm and monitors hooked up to her. We can also pick her up and hold her again.

We are back to trying to feed her with a bottle, but so far, she is not very interested in it, so most of it still goes down her feeding tube. According to the doctors, this is her greatest obstacle to getting out of the hospital and going home with us.

Removing Tubes and Wires

Kayleigh is recovering from surgery very well. Yesterday morning, by the time we arrived at the hospital, they had already removed her drainage tube and catheter, as well as the lead wires for a pacemaker (that were never needed) and an IV line that went directly to her heart. She still has a couple of IV's, one in her leg and one in her arm, but is now only on a couple of different medicines. Yesterday, they began feeding her again. Once she was fed she looked much better and more comfortable.

She was also getting oxygen through a tube in her nose, but that was removed this morning. The doctors have said that she could move out of the ICU as early as today. Her next challenge will be eating consistently. Once she starts eating well and doing other normal activities, she'll be able to come home.

Successful Surgery

Kayleigh's surgery went very well today. She is now back in the ICU and is doing well. The narrow part of her aorta was too narrow to patch, so instead, the surgeon removed the narrow portion and connected the ends together. He indicated that this was more of a risk during the surgery, but will be better for Kayleigh in the long run because of the absence of a patch. The surgeon also told us that the patch he used to close the hole between her ventricles (VSD) was about the size of a dime. The ventilator was removed just a few minutes after the surgery and she is breathing on her own.

We appreciate everyone's prayers and support. We have received so many wonderful messages the past two weeks and are grateful for having such wonderful friends and family to help us through this difficult time. We have been overwhelmed by the number of people who have shown their concern for Kayleigh. We are looking forward to Kayleigh's recovery and finally bringing her home!

Surgery Tomorrow

Kayleigh is having surgery tomorrow. Please continue to keep us in your prayers.

Surgery is Scheduled

Kayleigh's heart surgery is now scheduled for Thursday. Dad went back to work today, but stopped by the hospital in the afternoon. Mom spoke with the surgeon, and he explained the procedure. Kayleigh's defect is actually called Hypoplastic Aortic Arch (not Interrupted). The Aorta, rather than being disconnected (interrupted), is very narrow. She also has a small hole between her left and right atrium as well as the one between the ventricles. Apparently, all newborns have the hole between the atriums, and it usually closes on its own, but the surgeon is going to stitch it closed. He is going to place a patch between the ventricles since that hole is too big to stitch.

One of the Catholic priests who works at the hospital came in today to say a blessing for Kayleigh and for Mom and Dad. We've also had a couple of other pastors come to say prayers, and we've heard from many people that they've offered a prayer in their church as well as personally. We are very thankful for all of the prayers.

We've heard many great things about Children's Hospital and a couple of people have mentioned to us that the surgeon that will be performing the operation is "one of the best." We're very lucky to be able to provide such great care for Kayleigh.

No Surgery Today

Kayleigh did not have her surgery today. Apparently, the two surgeries scheduled before Kayleigh's took a little longer than expected. The best estimate is now for Thursday, but they're still not sure.

Kayleigh did well today. She still hasn't had any problems keeping her food down since she started taking the Regulin. Her temperature came down as expected and has not been a problem since. Now it's just normal life in the ICU until the surgery. Kayleigh's favorite nurse got her a mobile and she really enjoys looking at it when she's awake.

Look at Me

We just liked this picture and wanted to share it.

Surgery May Be Tomorrow

Today, Kayleigh had lots of visitors, including Auntie Cindy and Uncle Pat, Andrea, and Ryan, Auntie Pam and Uncle Mike, Laura, Rachael, and Matthew, Grandma and Grandpa R., and Great-Uncle Tom and Aunt Sandy.

We also learned that the surgery could happen as soon as tomorrow. It is tentatively scheduled for late afternoon, but it depends on how earlier surgeries with other patients transpire. If the other surgeries take longer than expected, Kayleigh's will have to be done another day.

Kayleigh is now on a couple of new medicines: Zantac for controlling acid reflux and Regulin to help her digest better and more quickly. The Regulin seems to be helping her to stop vomiting as she hasn't done so since early this morning.

Kayleigh was awake and alert much more today, so Mom and Dad were a bit worried that something might be wrong. (Mom and Dad were also worried when she was sleeping all day yesterday.) She did have a temperature of 100.4, but hopefully that will go down by morning.

More Tubes

Kayleigh has not been eating well and she's been spitting up some of what she does eat. So, yesterday, the doctor's decided to constantly feed her through the tube in her nose. That means that, unfortunately, we will no longer be bottle feeding her. Also, they tried to take a blood sample from the IV in her belly button, but couldn't get it. They ordered an X-Ray to make sure that the IV hadn't become dislodged. Luckily, the x-ray showed that it is still in place because this is how Kayleigh is getting her prostaglandin. This is the medicine that is keeping the PDA, a temporary vessel in her heart that usually closes a few days after birth, open. The bad news, however, is that they needed to put a second IV in her arm. This IV is there just in case they need to give her anything else. So, now she has her left arm taped up in a splint to keep it straight.

Grandma and Grandpa Coming to Visit

Grandma and Grandpa L. are coming to visit today along with Auntie Kelly and Uncle Chad. Grandma and Grandpa R. and Auntie Patty visited on Thursday and Aunt Sandy came to see Kayleigh on Wednesday. We also had a preacher from our church come to give Kayleigh a blessing on Friday. She will be baptised sometime closer to the surgery date. Mom and Dad are very thankful that so many of our family members will be able to see her before her surgery.

Introduction

Kayleigh Alexis was born on September 23, 2005 at 10:13 p.m. She was 7 lbs. 3 oz. and 18.5 inches long. Unfortunately, Kayleigh was born without the radius bone in her right arm and she is missing the thumb of her right hand. A kidney ultrasound a couple of days after her birth revealed that she has only one kidney. After an echocardiogram and an EKG, it was discovered that Kayleigh also has a couple of serious heart defects and will need surgery.

We'll be posting updates on Kayleigh here periodically to let everyone know how she's doing. This will allow us to keep everyone informed since we don't always have time to call everyone. Feel free to post comments.