Neonatal Follow Up Clinic Visit

Colby had to return to the Neonatal Follow Up Clinic at Vanderbilt on Wednesday for his 12 month visit. Just like at his 6 month visit, they asked us tons of questions about his development in three different categories: motor skills, cognitive skills, and language skills. Some of the questions that they ask are difficult to answer...they really make us think! I am looking forward to the 2 year visit, because then they will be able to actually observe Colby perform the skills rather than depend on me and Jason to answer the questions.

Colby scored well again in the cognitive and language categories. Cognitively, he is equal to 14 month olds, and with his language, he is equal to 11-12 month olds. Once again, it is always great to hear that he is right on track with these skills. In the motor skills category, we were told that he is equal to 7 month olds. Jason and I kind of expected this going in, since he is not crawling or pulling up yet. As you can imagine, though, it is always kind of hard to sit and listen to someone tell you that your baby is behind other babies his age, because to us, he is perfect!

The good news is that we can start Physical and Occupational Therapy and hopefully get him caught up in no time! The doctor told us that Vanderbilt has one of the best PT/OT clinics in Middle Tennessee, so we are looking forward to starting this process as soon as possible. Another bonus of doing the therapy at the Vanderbilt Clinic is that they will actually come to work with him while he is in the hospital. I really like that we will have this continuity.

The doctor also suggested that we start working with a nutritionist. Up to this point, we have only spoken with the nutritionist at our cardiologist's office. She feels that working with a nutritionist that is only concerned with Colby's growth and nothing else will be very beneficial to Colby. We are willing to try anything! Colby will have his first visit to the nutritionist on September 17th.

12 Month Accomplishments

Colby had his 12 month Well Check up on Thursday, August 6th. He did such a great job...as always! He is so funny when Dr. Hudson is examining him. He watches and studies every move Dr. Hudson makes with the most serious face. I guess he wants to be sure he doesn't miss anything.

Colby's sats were great! They were actually in the upper 80's, which I cannot believe. This is truly a blessing! Colby's weight, on the other hand, was not too great. He has not really gained much weight in the past 3 months, but as Jason said, he also hasn't lost any weight! Jason is so good at always looking for the positives...thank you for that Jason! So, here are Colby's stats for his 12 month checkup:

Height: 26 inches (he measured 25 inches at 9 months)
Weight: 14 lb 15 oz (he weighed 14 lb 11 oz at 9 months)
Head Circumference: 18 1/4 (he measured 17 1/2 at 9 months)

Colby is still not on the growth chart, but he is at least continuing to follow his only little curve. This is encouraging to us. Dr. Hudson also feels that after his Glenn Operation, his growth will really take off, not only weight but his height as well. Jason and I are very hopeful that this is true. If not, he may be riding backwards in his car seat until he is 2! Ha!!

The last part of these well visits are always the worst...the dreaded immunizations! Colby had to get two shots this time, but he handled it very well. He of course screamed for several minutes, which always breaks our hearts, but after a little loving and a Dum Dum, he was good to go!

Other 12 month accomplishments:

• saying 3 words now: dada, bye-bye, and hi...still no momma : (
• eating 3 meals a day plus snacks and drinking whole milk with his meals
• waves hi and bye to everyone, and I mean everyone! He is a VERY social baby!
• Dances any time he hears music or clapping. I need to get this on video, because it is SO cute! His little head just moves to the beat!
• Has 5 teeth now and is trying to get several more all at once (not fun)
• Loves to make us laugh. He has a great sense of humor, thanks to Jason!
• Loves to play "How big is Colby?" He just throws his arms straight up in the air and smiles!
• He understands when we tell him "no," but like Brody, he doesn't always listen to this one!
• He is not crawling yet, but he will scoot very short distances on his bottom. He also likes to sit in one place and just spin in circles to see everything and everyone around him.
• Enjoys standing up holding on to our hands or furniture (hasn't pulled himself up yet but getting stronger)
• Very attached to me and Jason, which I do not mind at all! He is just so cuddly!
• Favorite foods right now: Refried Beans, Baked Beans, Vanilla Yogurt, cookies, popsicles, waffles

We are so proud of Colby and all that he has accomplished in this first year. It feels like a million years ago that we heard of his heart defects at my 20 week ultrasound and the worry that I felt. So many questions ran through my head, and still run through my head occasionally. Would he be okay for the remainder of the pregnancy?, Would he be able to breathe on his own after being born?, Would he need immediate intervention to survive?, Would he be able to endure the procedures, surgeries, and numerous tests?, Would he be severely delayed because of all that he was going to endure?, Would he make it to his first birthday?

I am so happy to say that he has made it to his first birthday, and he has done better than anyone expected. He has unbelievable strength and an incredible spirit. We are looking forward to our future and watching him grow and mature into an amazing little boy!

A Memorable Birthday

It's my Birthday!!!

I decided that I wanted to start a little birthday tradition with our boys, and Colby's 1st birthday seems like the best time to start it. So, I took them for a special birthday breakfast at Shipley's Donuts. Donuts are something that we don't eat all of the time, so I thought it would be perfect.

Dressed and ready for some donuts!

The Birthday Boy loved his chocolate milk

Brody decided his favorites were the donut holes

Colby enjoyed the strawberry filled...just like mommy!
The white shirt was probably not a good idea!




After our donuts (and a quick clothes change for Colby), we headed to the park to swing and feed the ducks. Colby swung for the first time a couple of weeks ago, and he absolutely loved it! He also enjoys watching all of the ducks as Brody feeds them. I thought this would be a fun birthday activity.

After a much needed nap, we went to see Gacky and Granna. Unfortunately, we had to visit them at the hospital. On Tuesday morning, my mom had an arteriogram done at Summit and then was immediately taken by ambulance to Centennial. They found two blockages that needed to be repaired immediately. This was a complete shock to me, because she has not shown any symptoms of this at all. This was caught by her primary care physician during a stress test for her annual physical. I am very happy to report that she had a stint put in on Wednesday (my birthday), and she is doing great! She was discharged on Thursday and went to work in her classroom on Friday. She and my dad have a hard time slowing down and taking it easy! The funny thing is that Colby feels completely at home in a hospital, so I don't think he minded one bit spending part of his birthday there, especially since it was the heart wing. Ha!! Knowing my mom is now "fixed" and healthy is the best birthday gift that me and Colby could have received. We love you Granna!!

For Colby's birthday dinner, we went to Texas Roadhouse. Colby loves the rolls, baked beans, and Sweet Potatoes! We were all kind of tired of birthday cake (we had been eating the left overs from the party all weekend), so we decided to get some Maggie Moo's Ice Cream for a special birthday dessert. Unfortunately, Colby was exhausted by this time and not really interested, but Brody thoroughly enjoyed his chocolate ice cream with M&Ms.

I think Colby had a very good 1st birthday, and I am so glad. He definitely deserves it for being such a trooper during his first year of life! There are many adults that could not endure what he has endured this year, and he has overcome it all with a BIG smile on his face.

Happy 1st Birthday Colby!! You are an inspiration to all of us! You have such an amazing spirit, and your sweet smile just lights up everyone around you! We are so proud of you, and we look forward to watching you continue to grow and develop. I hope you know how many lives you have touched just by being you. You are truly a special baby, and I know you are going to do many special things in your lifetime. We love you Monkey!!!

A Monkey Beach Bash

We wanted to have a big celebration for Colby's 1st birthday, because we truly have SO MUCH to celebrate! We are not only celebrating the huge benchmark of Colby turning one, but we are celebrating the fact that we made it! We have survived the stress and craziness of this last year. Hallelujah!!! We are also celebrating the fact that Colby continues to defy the odds and do so well. Before his birth, we didn't think we would be able to leave the hospital without him having his first surgery, but he made it 2 months before needing a shunt! Then, we never expected him to make it an entire year before the Glenn Operation, but he has! In fact, he will be almost 13 months old before this surgery. What a blessing! Colby continues to inspire and amaze all of us, and I am so thankful that we were able to get together with family and friends to celebrate him! Not even the rainy start was going to stop us from having a good time during this monkey beach party!

Everyone that came to Colby's party is special to us, but there were two very special guests that I want to mention...Cain and Amelia. Cain is our friend that is 6 months younger than Colby and also has Tricuspid Atresia. Cain's mom and I have become pretty close over the last few months, and I am so thankful for her friendship. We have been able to help each other through some very difficult times. Thank you Catherine, Brad, and of course Cain for sharing in Colby's big day. I am so glad you guys live close, and I look forward to watching Cain and Colby share many, many more birthdays together!

Amelia is another good friend of ours with a heart defect (Tetralogy of Fallot). She underwent open heart surgery as a baby, but it has not slowed her down one bit. She is a beautiful and smart little girl! Amelia's mom, Amy, has been a VERY good friend to me. I met Amy several years ago when her children were attending Primrose and I was working there. She was also Brody's first pediatrician. Unfortunately, Amy and Josh left Tennessee a couple of years ago. All I can say is thank goodness for phones, text messaging, and email, because I wouldn't have made it through the last year without Amy. She has been such a huge support to me, and I am extremely thankful for her friendship. She drove from Texas with her 3 kids just to be here for Colby's big day, and with the storms they had to drive through, it took her 14 hours to get here. Words cannot express how much this means to me!! It was so great to see her and to see Amelia playing with Colby. Amelia, you will never know how much of an inspiration you are to us. Thank you guys for coming to help us celebrate!

Sorry for Delay

I am so sorry for the delay in posting pics and info from Colby's 1st Birthday!! My laptop died on Sunday. We did get a new laptop on Monday, but I have not been able to get my camera connected to it yet. I am still working on this! I am not the most technical person around. Luckily, though, our good friend Jay is going to help us out with this. So, hopefully I will get pics and info up soon! Colby did have a great celebration on Saturday, though, despite the rain, and I think yesterday was a fun day for him as well. I just still can't believe my baby is one!

"Let's play ball Colby"

The other day, Brody decided to try and roll the ball with Colby, and to our surprise, he loved it! It was so cute watching them roll the ball back and forth to each other. Brody was so excited to actually play with Colby. Now, I hear Brody saying, "let's play ball Colby," all the time. I love watching them have fun playing together!

Whole Milk...So Far So Good

After discussing it with our pediatrician, we decided to go ahead and start Colby on whole milk. With all of the trouble he had with formulas, we were worried that milk was not going to work, and we wanted to have plenty of time to get him adjusted to something before his surgery on August 28th. So far, he seems to be doing well with the milk...we are keeping our fingers crossed! He is still taking bottles of breast milk a few times a day, but at meals, he is drinking whole milk from a cup (with a straw, of course!). It is so crazy to me that he is big enough to be drinking milk!!!

Like other second children, Colby is being exposed to the "good stuff" before he probably should. Brody gave him a sip of chocolate milk one day, and he loved it! So, we also give him a little chocolate milk at times too. I justify it to myself by saying that it just increases the calories a little more...ha!

Surgery Date Scheduled

I spoke with scheduling earlier today, and we have scheduled Colby's Glenn Operation for Friday, August 28th. Having a date is great, but it also makes me very nervous...it became much more real today! We will go on Thursday, the 27th for his Pre-op appointment with Dr. Christian and Dr. Doyle. I hope to find out more information about what the surgery will actually involve. I have had a very hard time making myself even think about it until now. I will share more information about the surgery after we meet with them on that Thursday.

Colby seems to be doing much better now after his cath last week. He had a couple days where he wasn't feeling so great, but he is slowly but surely getting back to his old self. His sleep schedule has changed, but I'm hoping that is because he is getting in a couple of teeth...finally! These first 2 teeth have been kind of lonely! I think 2 more teeth are popping through on the bottom. I guess those top teeth will come eventually.

Both the boys love being outside, so we go out as much as we possibly can. We recently bought a trailer for our bikes, so they have had a lot of fun going for rides in that. Colby also likes to "drive" his little car when Brody is out driving his truck. I can already see that he wants to be just like his big brother...so sweet!

Primrose School Of Hendersonville's Spring Fling Donation

After Colby's Pre-Cath Appointment at Vanderbilt last Tuesday, Mrs. Ashley O'nuki, the Assistant Director of Primrose, met us to make the donation from Spring Fling. In addition to the $2,500 that was raised for Vanderbilt during Spring Fling, the parents of Primrose also came together to collect over 300 children's books. It was so exciting to make this donation to the Pediatric Cardiac Intensive Care Unit (PCICU) at Vanderbilt. They took such great care of Colby after his first surgery, and I know they will continue to take great care of him after his next surgeries. This monetary donation will be used to help so many heart babies recovering in the PCICU, and the books will bring smiles to their faces.

Thanks again to Jason and Deanna McGee, Primrose School of Hendersonville, and the families who participated to make this Spring Fling such a huge success. We are so honored that you all chose to donate this money in honor of our little Colby. We would also like to say a special thank you to Mrs. O'nuki for taking the time to come to Vanderbilt and make this donation memorable. We truly appreciate it!

A Sad Goodbye to Dr. Liske

We found out a few weeks ago that Colby's cardiologist, Dr. Liske, is moving to Knoxville. I cannot tell you how sad this makes our family. Dr. Liske has been such a huge part of our lives over the last year and a half. Dr. Liske was the first cardiologist that we went to after Colby's diagnosis at 20 weeks of pregnancy. After that first meeting with him, Jason and I knew he was the BEST cardiologist for us. Dr. Liske has provided us with so much support, encouragement, and hope, and he has been amazing with Colby! He is an outstanding doctor and man, and we are just heart broken that he is leaving us. We wish him the best of luck at his practice in Knoxville and hope that we can one day see him again!

Here are some pictures of Colby and Dr. Liske before Colby's catheterization on Wednesday. As you can see, Colby loves Dr. Liske! We are all going to miss him!

Colby was giving Dr. Liske his best sad face, but unfortunately, it didn't work.

Colby showing off his "Bye-Bye" wave.