Another Good Appointment

Yesterday, Colby had his 6 month Neonatal Follow Up Appointment. The Neonatal Follow Up Clinic at Vanderbilt follows babies that were in the NICU and are at high risk for suffering from developmental delays. Since Colby had the seizures at birth and because he is a "heart baby" that will face several hospitalizations due to surgeries, he meets the criteria.

I was very nervous about the appointment yesterday, mainly because I had no idea what to expect. It turned out to be not bad at all, though. It consisted of the doctor asking us tons of questions about Colby and what he can or cannot do yet. I was surprised at how difficult it was to answer some of the questions. She was making us really think! There are 3 different areas that they assess...motor development, cognitive development, and language development. Each area has a checklist where she marks off the skills that he has mastered. By the end of all of her questions, our heads were spinning!

After scoring his three checklists, she gave us the good news. Colby is right on track with motor development and cognitive development, and he is at an 8 month old level for language! We suspected that this was the case, but it is always nice to hear it from the professional!

Colby will be followed by the clinic until he is 3 years old. He will go back at 12 months, 18 months, 2 years, and 3 years old. Each time, the doctor will examine him and go through her checklists. At 2 and 3 years old, though, he will actually have to perform the tasks for her. I am so glad that they are following him so closely. It is nice to know that if he does ever start to fall behind in any of these areas, we will catch it very early and provide him with the appropriate therapies.

Jason and I were shocked to discover that this clinic at Vanderbilt provides this service for free! They receive grants from the state to cover the costs, and they even provide travel vouchers to help families with travel expenses getting to and from the clinic. We are so fortunate to have a facility like Vanderbilt!!

I also wanted to mention that the inevitable has finally happened...Colby has his first little cold. After my initial panicking and being upset with myself, I took him to the pediatrician to make sure it was only a runny/stuffy nose. Fortunately, it is! Dr. Hudson said he seems to be handling the cold very well so far. Please pray that he fights off this cold quickly and does not get any sicker. The last thing we need is an illness to set us back now. This is definitely a good reminder to me that I cannot protect him from every little thing, even though I would really like to!

A Huge Success!

Wow! When Jason and I started planning this Blood Drive, we of course hoped that we would have a good turn out, but we never dreamed that we would have the amazing turn out that we did. The doors opened for people to sign-in at 9:00 am, and the gym stayed full until the last donors gave (me and Jason) at 4:15. Everyone was socializing, eating, and appearing to have a great time...except for when they were being stuck with the needle of course! We had so much fun getting to talk with family, friends, and even strangers throughout the day. Jason and I are completely blown away by the number of people that came out to show their support for our little Colby!



After much debate between Jason and myself, we finally decided that Colby should be able to be there and be a part of his big day. After all, everyone was coming in his honor! We were very nervous about him being out of his "bubble," but we took as many precautions as we could to keep him healthy. Fortunately, everyone there was very respectful of his space. It is so crazy to think that this is the first time many of the people there have ever seen Colby in person. It was almost like his debut! One of our good friends joked that we did this blood drive just to prove that Colby does exist!



Big brother Brody was also there the entire day, and he did amazingly well! If you know Brody, you know he likes his naps, but he hung in there and never even got cranky. We can probably thank the number of cookies he ate for that! Brody spent the entire day running and playing with all of his buddies. I'm so glad that our friends allowed their kids to come be a part of this and spend the day with Brody. It made it such a fun day for him! Thank you guys!



I mentioned that Brody ate a lot of cookies, but I don't think you understand the amount of food that we had there unless you saw it first hand! We were shocked at how many people were kind enough to spend time baking muffins, cookies, brownies, sausage balls, breads, etc. I wish I had a picture of the food table...it was incredible! After seeing all of the food, we realized we should have had a bake sale. We would have been able to make a nice donation to CHD research. Next time we do a blood drive, we will definitely keep this in mind.



Thank you to everyone that provided us with food. I want you to know that we truly appreciate it! I also want you to know that none of the food went to waste. We distributed the remaining food to different local outreach programs. Two of these programs are run by our Church...a homeless outreach program and a partnership with a local Assisted Living Facility. We also sent some food with one of our neighbors that just happened to be working Room in the Inn at her church that night. I hope that this food was enjoyed by everyone that received it. I know that everyone at the blood drive truly enjoyed it all...everything was delicious!



So, now for the numbers...

• 85 people signed in at the door


• 75 people went through the interview/screening process (10 people had to leave due to previous engagements...I apologize again for the long wait time!)


• Several people (I don't have an official count) were turned away at the door, because the red cross could not accommodate any more walk ins


• 65 productive donors!!! (10 of the 75 were deferred due to medical reasons)


• 31 of the 65 donors were first timers, including myself

These are just incredible numbers! Again, Jason and I are completely blown away by the support shown for Colby. We knew Colby was a special baby, but we had no idea just how special! It is so amazing for us to think about how many lives he has touched in his very short life. I'll never understand why God blessed us with such a "Super Baby!"

Thank you to everyone who was a part of this day! We truly appreciate you choosing to spend several hours donating blood on not only a Saturday, but also Valentine's Day! We love each and every one of you! Thank you to those that came and volunteered your time as well, even though you weren't able to donate blood. Because of all of you, the day ran very smoothly! Jason and I want to say a very special thank you to our moms...Joan (Nana) and Teresa (Granna). Once again, you two stepped up and supported us like only moms can! We really appreciate you spending your entire Saturday helping us out! We love you both very much!!!!!!!!!

We have already had some close friends say that we need to make this an annual event. Jason and I think that this is a great idea, especially now that we are recovered from the long day Saturday! So, we may be doing this again next February. I can't think of a better way to recognize CHD Awareness Day than by gathering people to give blood!

So Much to Share

We have so much good news to share from the last couple of days. Instead of doing separate posts, I'm going to include it all in this one post in different sections. Hopefully it will be easy to follow. If not, I am very sorry!!

Colby's Cardiology Appointment

Yesterday, Colby went back to see Dr. Liske for a follow up appointment. No matter how well I think he is doing, I always get nervous for these appointments! I don't think that will ever change. Fortunately, he had a great appointment! Dr. Liske is very pleased with his progress, which makes me and Jason so happy!

Colby's sats are starting to slowly fall, which is what will happen as he gets closer to needing his next surgery. His sats yesterday were about 77%...they had been in the mid 80s. There is no real concern until his sats get down to 70% and below. After examining Colby, Dr. Liske seems to think that his original path of blood flow to his lungs (the hole in his heart), has now closed. This means that he is only getting blood flow through the shunt that they put in during his first surgery. This is kind of a good thing for Colby, because it means he is not getting as much blood into his lungs. Before, he was just being flooded, which was causing him to be in severe congestive heart failure. Hopefully, he will be a little more comfortable now!

The best news from the appointment was Dr. Liske telling us he thinks we may have 2 more months before he will need his next surgery!! I would love to get into spring before we have to go back into the hospital. I would also love for Colby to have 2 more months to grow!! The bigger, the better!!! Our next appointment will be in 1 month. At that appointment, Dr. Liske will do an echo to get a good look at his shunt and take some measurements. This will give him more of an idea of when the surgery might need to be scheduled. We are just thrilled that this surgery will be scheduled. We were not too fond of the last surprise surgery and the chaos that surrounded it!

So, as always we will keep you posted.

Hearing Check Follow-Up

Colby also had a hearing check done yesterday. He passed his newborn hearing screening, but since he was in the NICU, Vanderbilt wanted us to follow up with the Audiology Clinic when he was 6 months old. Apparently, NICU babies are at a higher risk for hearing loss...at least that is what we were told yesterday. From the tests that the doctor did yesterday, she sees no concern with his hearing. Again, more good news! We will have to continue following up with the Audiologist until Colby is 3 years old. At 3 years, they are able to do more hearing tests and tell us with confidence that his hearing is okay. We go for our next appointment in 6 months when Colby is a year old.

Our Newest Heart Friends

Since finding about Colby's heart defect, I have really depended on two other heart moms for support. These two moms are always there when I need to talk, ask for advice, or just to vent my frustrations with the whole situation. Unfortunately, neither of these moms live near by. Katie, who is Maddie's mom, lives in Washington. Maddie has Hypoplastic Right Heart like Colby, so Katie has been so great to talk with by phone and email. She has answered so many of my questions concerning surgeries, feeding issues, blue spells, etc. You can see Maddie's story at http://allredbabygirl.blogspot.com/. Amy, Amelia's mom, is our former pediatrician and close friend. They now live in Minnesota. Amelia doesn't have the same heart defect as Colby, but she has experienced similar treatments and complications. Amy has not only provided moral support as another heart mom but also explained lots of medical lingo that is way over my head. I couldn't have made it through the last several months without Amy!

My wish all along, though, has been to meet someone that lives near us that has the same defect as Colby...someone that I could really connect with and share this difficult journey with. This wish came true a few months ago when Catherine found our blog and contacted me. She was pregnant at the time, expecting her first child. She and her husband, Brad, were expecting a baby boy with Tricuspid Atresia and Hypoplastic Right Heart, just like Colby. I could not believe it when I spoke with her for the first time! Tricuspid Atresia is not a very common heart defect, so to hear that her son also has this defect and lives near by was amazing. On top of that, she was going to the same cardiologist at Vanderbilt that Colby goes to!

Catherine and Brad welcomed their little boy, Cain, into the world just a couple of weeks ago. A week later, he underwent his first open heart surgery to start the repairs on his heart. Cain is recovering now at Vanderbilt. When we went for Colby's appointment, we were able to finally meet Catherine and Brad in person! It was so nice to see them and get to spend some time talking about their little guy and the things we have both been through so far. The best part of all of this is that now Colby will have a friend to grow up with that understands exactly what he is going through. Cain and Colby will be able to really connect and help each other when times get tough. I think this is such a blessing! You can follow Cain and his progress at http://www.clinkscalesfamily.blogspot.com/.

Catherine and Brad seem like such wonderful people! I look forward to spending time with them and getting to know them better in the near future, and I hope that I can be as good of a support person to Catherine as Katie and Amy have been to me. I love my heart friends dearly, and I know that God crossed our paths for a reason!

Our First Blanket Delivery

When Colby was in the NICU at Vanderbilt, one of our nurses, Melissa, covered his little bed in a bright and colorful Noah's Arc Blanket. I will never forget walking in to see him and noticing how nice that blanket looked. It sounds kind of silly, but if your baby has ever been in the hospital for an extended period of time, you probably understand. It is just so difficult having to look at your baby lay in a bed hooked up to monitors and machines. When there is a colorful and fun blanket under him, it makes it a little bit better some how.

So, when my mom made Colby some colorful swaddling blankets for Christmas, I mentioned to her again how nice it was to have cute blankets in the hospital. She of course got to work immediately and made several blankets with different fun fabrics like animals, ABCs, hearts, Curious George, etc. We delivered this first set of blankets to the PCCU yesterday, and we hope to make another delivery soon. Thank you again mom for your kindness! I hope that these blankets will make another mom or dad's day a little brighter!

Jump Rope For Heart

On Tuesday, I got a phone call that truly made my day!! Mary Grace, one of our best friends' daughters, is in Kindergarten this year. Their school is doing Jump Rope for Heart this month, and the students were told that they could choose to jump in honor of someone with a heart problem. Mary Grace, being the sweet child that she is, immediately thought of Colby. So, Mary Grace will be doing her Jump Rope for Heart in honor of our little monkey, Colby! It makes me so happy to know that Colby has such wonderful and thoughtful friends to grow up with. Thank you Mary Grace! I know you will do wonderfully with your jumping! Here is a picture of Mary Grace and Brody from Superbowl night. I know Colby will love Mary Grace just as much as Brody does!

Blood Drive

We are so overwhelmed by the response we have gotten with Colby's Blood Drive. We have officially booked every time slot that the Red Cross allowed us...that is 64 people signed up to donate blood!! Thank you, thank you, thank you!!! Jason and I are so blessed to have so many wonderful people willing to step up and give blood in honor of our baby boy! We also thank those of you that have volunteered to help out on Saturday by working or by bringing home baked goodies. I know everyone giving blood will appreciate having a nice snack to eat afterwards. If you did not get to sign up for a time, but you would still like to donate, please feel free to come by the church on Saturday. We may still be able to work you in, especially if anyone that is signed up has to miss their appointment for some reason.

We look forward to seeing you all on Saturday, and we are very appreciative of you taking time out of your Valentine's Day to do this!

BlOOD DRIVE Schedule Reminder (Updated 2/10/09)

Thanks to everyone that has signed up for Colby's Blood drive. We are in amazement at the response we have had during the past week. It is hard to believe that the blood drive is Saturday. We have several time slots double booked and very few slots not full. If you are still interested in donating please contact us at jbbhitchcock@gmail.com

9:00 Jon Kemp, Chuck Rampenthal, Sharon Rampenthal, Shantel Watson, Rachel Allen
9:15 Jason McGee, Steve Brown, Jama Cook,
9:30 Kay Stafford, Don Wolfe (x2), Michele Harris,
9:45 Shelia Goostree, Mark Goostree, Jason Frazee
10:00 Clift Slaughter, Tracy Oden, Debbie Bostwick
10:15 Melissa Goostree, Jim McPherson, Jenadi Talbot
10:30 Ben Talbot, Brice Jennings, Julie Watson
10:45 Ms. West, Jay Watson, Jason Rowell
11:00 Andrea Rowell, Renee Tice, Amber Tice
11:15 Jessica, Kelly Flemming, Kendra Altepeter
11:30 John Altepeter, Jana West, Clint Jennings
11:45 Mist Benz,
12:00 Will Benz, Chris Thomas, Aaron Calhoun
12:15 Kim Thomas, Betty Dye, Tony Dye
12:30 Tyler Goostree, David Watson, BJ Dye
12:45 Maggie Hobrat, Vivek Chandra
1:00 Deitra Mixer, Heather Littlefield, Mark Littlefield, Beth Knapp
1:15 Mary Koellein, Jason Tucker, Aimee Butler
1:30 Sara Smyly, Stephan Butler, Dub Hoover,
1:45 Lew Moore, Blair Smyly, Leanne Cullom
2:00 Jennifer Baker, Bruce Cullom

TBD Julie Carter, Bram Baker

6 Months Old

Colby turned 6 months old yesterday, which I still cannot believe, and today we went for his 6 month well checkup. I am very happy to report that Dr. Hudson said Colby looks great!! It is so nice to hear how well he is doing and how healthy he is! It is also nice to hear that he is right on track developmentally! What more could we ask for? Oh yes, we could ask for a good weight gain, and guess what...we got it!!!

Colby weighed in today at 13 lb 4 oz! This means that he officially doubled his birth weight by 6 months of age! Jason and I never thought that this would have been possible a month or two ago, but as always, Colby continues to amaze us! This weight also means that he gained an ounce a day this week! He is unfortunately still not on the growth chart, but the good news is that he is still following the curve perfectly. I'd say this is pretty good for now! Colby has gotten longer too, measuring 23 1/2 inches, which is not at all tall, but let's be honest, he doesn't have much chance of being tall with me and Jason as parents!

Colby is up to some new tricks now that he is 6 months old. He is sitting up, eating cereal, fruits, and veggies, babbling more and more, chewing on everything that he can get to his mouth (including his feet!), sleeping in his own bed in his room, and of course laughing a lot! He is truly a very happy baby! He is also teething and has been for a few weeks now. Dr. Hudson seems to think he will have some teeth very soon!

When I think back to last March when we first found out about Colby's heart, I never would have dreamed he would be doing this well at 6 months old. I know he still has a long road ahead of him, but if the last 6 months are any indication, I am positive that he will make it through everything with a smile on his face! He is such an inspiration! Happy 6 months Birthday, Colby!

Below are some pictures from the last few weeks. I am loving how Colby is starting to look a little chubby!! I love chubby babies!

As Brody puts it, "Colby go night night in big bed!" Brody loves to "Hi Colby" (hug on him) in his bed before we get him up in the morning.

Colby loves sitting up playing with his keyboard...another little musician!

Sweet Potatoes...yum!

Best Buddies!

A Good Week!

I took Colby to our pediatrician's office this morning for his 4th Synagis Shot and a weight check. As always, I was very nervous to have him weighed! I obsess more over his weight than I have ever obsessed over my own, and that is saying a lot!

Fortunately, we had a good number this week!! Colby is up to 12 lb 14 oz!! This means he has gained 12 oz in two weeks!! Not too bad for our little heart baby...that is almost an ounce a day!!

Colby goes back next week for his 6 month well visit. Yes, I said 6 months! It is hard to believe that he will be 6 months old next week! If he can gain an ounce a day until that appt, he will have doubled his birth weight by 6 months! A month ago I would have never thought this would be possible! We are thrilled that he is doing this well!! At his 6 month visit, he will also have to get a flu shot on top of his immunizations. Poor baby is always getting poked, but if it will help him to not get the flu, we are all for it!

Colby has also had a good week of sleeping, which I'm nervous to even mention. I do not want to jinx this!!! He is in his own room again (the first time since before his ER visit and surgery), and he is apparently loving it! Daddy is loving it too!! I kind of miss having him so close, but I know it is better for him to be in his comfy crib in his room! I am just so excited that he seems to like his bed!!





Please remember the Blood Drive coming up February 14th!! We still have some open slots that we need to fill!! If you are interested, please contact us with a comment or an email to jbbhitchcock@gmail.com. Thank you to all that have already signed up. We have had such a great response! God has blessed us with so many wonderful friends and family! We truly appreciate your willingness to help Colby and others that will need to receive blood from the Red Cross!

BLOOD DRIVE

OK, the time is almost here for Colby's first annual blood drive. We finally received the schedule and are able to make appointments. The drive will run from 9:00 am until 2:00 pm on Saturday February 14th at Hendersonville Church of Christ. If you are interested in donating please send us an e-mail to jbbhitchcock@gmail.com or post a comment on the blog.....



Time slots are open from 9-2 in 15 minute intervals. We are trying to book as many appointments as possible to keep anyone from having to wait in line. We will be able to accept walk-ins but they have asked us to get a list of potential walk-ins as well. Our goal is to make this as quick and painless as giving blood can be......



If you are a little afraid of needles or prefer not to give of your fluids that is fine to we have several non blood related areas that we could use some help in on that day. We are looking for some volunteers to help sign people in, volunteers to donate homemade baked goods, volunteers to pass out snacks to everyone after they donate. If you are interested in any of the above fun activities let us know via e-mail.

Colby has set a goal of 75 donors so please help us reach our goal and furthermore please help to re-stock the blood bank for all of the families that face emergency surgeries everyday.....

Please see the Hendersonville Church of Christ website for directions to the church. I've included the link below...

http://www.hendcoc.com/directions.php

Colby is keeping us on our toes!

On Friday of last week, I took Colby to the pediatrician's office for his every other week weight check. I mentioned to the nurse that he had been breathing really fast since Thursday afternoon. I didn't think much of it, because he has had a problem with fast breathing for a couple of weeks now and our cardiologist is aware of it. As she listened to his heart and counted his respirations, I could tell she was a little concerned. Jason and I have gotten pretty good at reading the faces of Colby's doctors and nurses! It turns out that his respiration rate was 95...way too high! He normally is around mid 50s. His sats were also higher than usual at 94%. High sats at this point is a sign for concern. His sats should be around 80 now. Then came the weight check. I always dread this part! Colby had only gained 5 oz in 2 weeks.

With all of these concerns, the nurse went to get a doctor to examine Colby just to make sure that everything was okay. The doctor's first thought, and mine as well, was that he was sick with a cold, flu, or RSV. After checking his ears, throat, nose, lungs, etc, she quickly ruled that out...thank goodness. Colby was as healthy as could be. This was great news, but it made his fast breathing that more puzzling! So, she called to consult Dr. Liske to see what he wanted us to do. Dr. Liske was concerned but not overly concerned. He seemed to think it was probably fine, but he told us to go back to the pediatrician on Tuesday for another exam. We left the office with me of course a little nervous! It is not easy to watch your baby panting helplessly while just sitting still!

Tuesday morning, we went back to the doctor as directed. We weighed first this time, and immediately got great news!! Colby had gained 6 oz from Friday to Tuesday! He is now up to 12 lb 8 oz!!! I love when he has a good weight gain. Then came the bad news. His respiration rate was now over 100. Dr. Hudson examined him and then left the room to call Dr. Liske once again. The appointment ended with Dr. Liske telling me over the phone to come on out to his office at Vanderbilt. I was fine with this, because at this point, I'm pretty worried about our little Colby!

When we got to Dr. Liske's, they did an EKG and checked his blood pressure, sats, etc as always. Then, we waited to see Dr. Liske. After a quick exam, Dr. Liske seemed pleased with how Colby looked and sounded. His respiration rate was now in the mid 50s. Amazing! I guess Dr. Liske just has the magic touch! Dr. Liske even told us that he thinks Colby is getting over the hump after his surgery. He is hopeful that Colby will continue to improve and gain weight from this point forward. We are very hopeful for this as well!!! All of my worry for nothing! Dr. Liske said he will continue to have these fast breathing spells...it is unfortunately just part of it!

Dr. Liske gave us a little bit of good news, too. He showed us Colby's growth curve. Colby is no longer on the growth chart (since his surgery), but he is following the curve perfectly. I am so happy that he is gaining!! To help him continue gaining, we are going to try increasing the calories of his milk once again. We have been using corn oil, which takes the milk to 24 cal/oz. Now, we are going to use corn oil, formula concentrate (liquid), and rice cereal. I feel like a bar tender preparing a mixed drink each time I make a bottle. If it works, though, it is so worth it! Please pray that Colby is able to tolerate the formula concentrate. The nutritionist seems to think that the liquid may work better than the powdered formula did. I sure hope so, because he was not a fan of the powdered formula!!!

So, we managed to avoid another hospital stay...thank goodness!! I guess Colby just missed Dr. Liske and wanted to see him sooner than our 6 week scheduled visit! Colby continues to amaze me with how happy he is, even with his extremely fast breathing. If I were panting like he does, I would probably be miserable! Our little Colby is not, though. He is just as smiley and happy as ever! He is such an inspiration!

Brody's Big Night Out

Last Saturday night, Jason took Brody to his first Tractor Pull! If you have been around Brody lately, you know how obsessed he is with tractors and trucks, so for him, this was absolute heaven!! To make the night even more fun, his cousin Emilee and Uncle Jeremy went too! Emilee's birthday was last week, so I was glad that Brody got to spend some special birthday time with her! It is hard to believe that she is already 5 years old...Happy Birthday Emilee!!

In Brody's words, the tractors were "too loud," so he covered his ears and occasionally daddy's ears. Emilee is such a good cousin...she helped him cover his ears a few times and even put his hood up for extra coverage!

Great Report for Colby

Today's visit with Dr. Liske went better than expected. We are excited to report that Colby is at home tonight with no feeding tube!!!! We are so thankful that he has once again escaped this process for now. Colby has gained 2/3 of an ounce a day for the past two weeks! This takes his weight to 11 lb 12 oz. Dr. Liske was very pleased with this, and so are we!

The rest of the check up went well too! His sats and blood pressure are good, and Dr. Liske said his shunt is still sounding great! He is still breathing pretty fast during feedings, but he is learning to deal with this by taking frequent breaks. It is funny to watch him. When he gets to breathing too fast, he will turn his head away and catch his breath. Then, when he is ready to eat again, he will just open his mouth wide and look at us...he looks like a baby bird waiting for a worm!

Dr. Liske was pleased enough with Colby's check up today that he feels we can spread out our appointments once again. We will not go back for 6 weeks. He also wants us to take our weight checks from once a week to every other week. This is probably a good idea with all of the sickness going around. We don't want to spend too much time waiting in a doctor's office.

So, other than weight checks, it looks like Colby will be doctor appointment free until January 30th when we go for his next Synagis shot. This will be a nice break! We won't know what to do with ourselves!

Thank you all for the continued prayers and support! We truly appreciate each and every one of you! Don't forget February 14th!! We will hopefully have more information from the Red Cross soon. We will get the link up to sign up for a time to donate as soon as possible!