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!