Tuesday, September 30, 2008

Weight Check

Okay, so I took Colby for a weight check this morning, even though I didn't have to. He had not been taking in as many ounces each day, and I tend to worry (Jason would say this is an understatement). To our great surprise, though, Colby now weighs 9 lb 8 oz!!!! This is up from 8 lb 14 oz last Monday...a 9 oz gain in 7 days!!!!! Way to go Colby!!! Now, we just have to keep this up!

Monday, September 29, 2008

Go Titans Go!!

I guess you can tell what we spent our Sunday afternoon doing...cheering on the Titans with our newest little Titans Fan. Both of our boys enjoy watching football...at least we think they do. Brody always shouts, "play ball, play ball!" We look forward to the day that we can take them both to the stadium for a game. I know Jason is missing being there each game day, but being the good dad that he is, he stays home with us and watches it on TV. Go Titans!

Wednesday, September 24, 2008

Still Holding His Own

Today, Colby had another visit with Dr. Liske, our cardiologist. For me, I think this was the most encouraging visit that we have had! For starters, his weight and sats were both great! He weighed 9 pounds and his sats were 85. We can't ask for any better than this...Colby finally made it to 9 lbs!
After a fellow, a resident, and a medical student came in to listen to Colby's "complicated heart" and feel his "thrill" (the rumbling we feel when we put our hand on Colby's chest), Dr. Liske finally took a listen for himself. Apparently, Colby has a unique heart murmur to say the least, so Dr. Liske likes for the doctors he is training to hear it for themselves. He told us that he is "pleased" with Colby this week! There is still of course more blood flow to the lungs than normal, but after the echo from the last visit, he feels good that the lungs still have enough protection for us to put off any surgery for now. He also said that he is still hopeful that we will make it to the Glenn operation (close to 6 months of age) without needing the first surgery. What an awesome thing to hear, even though I try to never get my hopes up too much! He even told us of one patient that made it all the way to the Fontan (the final operation) without needing the first two surgeries at all. He said this is of course very, very rare...he has only seen it once in the last 10 years, but it does give us a little glimmer of hope!

The most emotional part of today's visit (for me) was hearing Dr. Liske brag on how happy he is with Colby's weight gain! Feeding Colby is a constant battle of mine and extremely stressful for me, so hearing from his cardiologist that he is gaining great is such a big relief! I was so overcome with relief, happiness, etc, that I actually cried right there in front of all 4 of these doctors. I'm sure they all think I'm crazy now, but I just could not help myself!! Dr. Liske even said he thinks Colby is getting a little chubby!! We love chubby babies!!

So, as you can probably tell, today's visit went really well! In fact, Dr. Liske is so impressed with Colby that we won't go back for a follow up until October 22nd... a month as opposed to two weeks. We also will only go to our pediatrician for weight and sats check every two weeks.

Colby continues to amaze me! He has such a complicated heart, has trouble eating, and has labored breathing and panting occasionally, yet he is doing so well. He is so strong to be so little!! He is truly an inspiration! I will never understand why God decided to bless me and Jason with such an amazing baby, but I will always be grateful. Colby has taught me more in the last 7 weeks than you could ever imagine, and I know the lessons will keep on coming for the rest of his life!

As you can see in the picture above, I was actually able to put "real" clothes on Colby for his appointment today instead of pajamas or a onesie...they finally fit!! I think this outfit is absolutely perfect for our Colby...he truly is "one of a kind!!"

Tuesday, September 23, 2008

Neurology Appointment

Two doctor's appointments down...one to go for this week!

Today's neurologist appointment was pretty uneventful. Basically, Dr. Barnes just asked us several questions about Colby...has he had any more seizures, does his development seem to be on track, has his muscle tone improved, etc. We let him know that Colby has been doing great as far as we knew. This led us back to our original question from the NICU...why did Colby have the seizures?? Apparently, this is not an easy question to answer. They only discover the causes of newborn/infant seizures about 50% of the time. Even though we may not ever know for sure what caused Colby's seizures, Dr. Barnes would like to try to find an answer for us. He is eager to see if the spots that were on Colby's brain are still there and if there is still seizure activity in his brain. So, we will be going back for a follow up appointment, another MRI, and another EEG in December, when Colby is a little older. For now, we are just thankful that Colby has not had any more seizures.

Dr. Barnes also wants us to follow up with hematology. Just what Colby needs...another specialist!! While Colby was in the NICU, one of the many theories of his seizures was a blood issue, specifically a clotting disorder. So, hematology should be calling us soon to schedule an appointment, where I am under the impression that Colby, Jason, and I will all have our blood drawn and tested.

Another recommendation that Dr. Barnes made today was for us to get connected with Tennessee Early Intervention System (TEIS). Because of the seizures and his heart defects and upcoming surgeries, Colby will most likely experience some developmental delays. This is never an easy thing for a mom to hear, but I am thankful that we have this resource available to us to help Colby if and when he needs it. From what I understand, TEIS will do ongoing evaluations of Colby's development and then provide us with therapists that can help with specific delays. What a great program!

Colby was of course exhausted after the appointment. He was very excited to get back home to his swing and take a good nap. Colby loves his swing!! Thank you again Aunt Pat and Uncle Lee for this amazing swing...we use it lots!

Monday, September 22, 2008

Weight/sats check

We just got back from Colby's weekly weight and sats check. Everything is looking good as of this morning. He now weighs 8 lb 14 oz, which is a 6 oz gain in 6 days! I think an ounce a day is great! His sats have fortunately come back up a little to 86. So, we will just see what his sats are on Wednesday when we see his cardiologist...hopefully they will remain around 86 or so.

Tuesday, September 16, 2008

Still Gaining!

Today's weight check went great!! Colby now weighs 8 lb 8 oz...that is an 8 oz gain in one week! We are very excited about this increase! It makes all of the feedings we are doing so worth it! Since Colby can't eat very much at one time (he gets tired), we have been offering him 2 ounces every 1 1/2 hours. It seems like he is always eating, but we are just doing whatever we can at this point to help him bulk up. We have also started fortifying every other bottle he takes with the soy formula. I am happy to say that he seems to be tolerating it okay...thank goodness! Hopefully, we are well on our way now to getting him bigger and stronger!

Colby's sats were only at 80 today. This is the low number that our cardiologist gave us...he wanted to know if Colby went below 80. Jason and I have been so used to being on the high end, we weren't sure what to think of being on the very low end. So, being the paranoid mom that I am, I called the cardiologist's office. They have assured me that this number is okay, but we do need to watch for any blue spells. I have been instructed to call them if he does turn blue before we go back to the cardiologist next Wednesday. My hopes are that he will be okay until then.

All of our doctor's appointments are over for this week, but next week, we go for our weekly weight/sats check on Monday, to the neurologist for follow up on his seizures on Tuesday, and to the cardiologist on Wednesday. Colby has a busy week ahead of him! I'm sure he will enjoy being able to get out of the house, though...I know I will!!!

Thursday, September 11, 2008

Walking a Fine Line

Colby went back to the cardiologist yesterday for a two week follow up. It looks like we are continuing to walk that very fine line, which is very hard for me! Dr. Liske did another echo to measure the pulmonary valve, and it looks like it is narrow enough but not too narrow. I know...it's very confusing! Basically, Colby is still getting too much blood flow to his lungs, but the valve is narrow enough to protect the lungs just enough to allow us to wait a little bit longer. Dr. Liske's plan is to wait as long as possible before doing any intervention to see if his body will create it's own perfect balance in preparation for the Glenn Surgery. The complicated part is that he wants to wait as long as possible before doing the Glenn (6 months old), because Colby has 2 Superior Vena Cavaes, which will basically require them to do 2 Glenn procedures on him at the same time. Our challenge is to get his body to balance out and stay balanced for the next 4 1/2 months. So, for now we are in a waiting game! I'm not a fan of the waiting game, but I guess I better learn to like it...it looks like we are going to be doing a lot of that with little Colby.

We will go back to the cardiologist again in two weeks for another follow-up. Next week, we will continue our weight and sats check at our pediatrician office. This week's weight check went great!! Last week, Colby weighed 7 lb 10 oz, and this week, he weighed 8 lbs. This is very encouraging to us. However, at our cardiologist's office, he showed a much slower weight gain on their scales. Very strange to me...Jason and I are still trying to figure this one out! Anyways, we will be trying yet another formula to fortify his milk. Hopefully, he will be able to tolerate it...once again, we will wait and see!

Thank you for all of your calls and emails to check on C0lby's appointment. I'm sorry I did not get to post info yesterday, but once we got home, things were busy as always!

Friday, September 5, 2008

Colby's first photo shoot

On Wednesday, Jason and I took Colby for his first photo shoot at Tucker Photography. Jason Tucker has done an amazing job photographing Brody since he was born, and we were excited to get Colby over there for his first professional pictures! Colby did such a great job...it even looks like he is smiling in one of them! I guess he is probably pretty used to flashes going off in his face by now.

Jason Tucker, Heather, and Beth at Tucker Photography are such amazing people. When we told them about Colby's heart defects and our blog, they told us they would send us some pics from the day to share with all of you! They also gave me some contact information for another one of their customers that has a child with heart defects. This family has already faced some surgeries, so it will be great to get in touch with another mom that can relate to what we are dealing with and even give us some advice.

Thank you so much Jason, Heather, and Beth! We truly appreciate you guys!!

By the way, Jason Tucker and his wife just welcomed their second baby girl, Ava, into the world yesterday, September 4th. Please keep them in your prayers as well!

I hope all of you enjoy these pics of Colby!

Tuesday, September 2, 2008

This morning, Jason and I took both our boys to the pediatrician...Colby for his weekly weight and sat check and Brody for his 2 year well visit. Fortunately, we received great news for both! Colby's sats were at 93, which is okay for now. Our cardiologist only wants to know when they go below 80. Colby is gaining!! He now weighs (on the pediatrician's scale) 7 lb 10 oz. Fourteen days ago, at his 2 week checkup, he weighed 6 lb 15 oz. This means Colby has gained 11 oz in 14 days, which our pediatrician seems very happy with! This makes me happy too! I'm just so glad to hear that he is gaining, even without us fortifying the milk with formula. Colby did not do so well when we were putting the formula in his bottle. We switched to a Hypoallergenic formula, and he still didn't do well! The formula made him spit up a lot and even puke up entire bottles. It also made him fussy. So, the cardiologist told us to stop fortifying the milk, which we were fine with! It was breaking our heart to see him scream every time we tried to feed him! My hope now is that our cardiologist is happy with this weight gain as well. If not, then we will try fortifying his milk again. This time, we will try a soy formula, though. Hopefully this will agree with Colby's tummy.

As for big brother Brody, he is doing great! He is weighing in at 28 lbs 13 oz and is 32 3/4 inches tall. Developmentally, he seems right on track. He of course didn't stop talking the entire time we were there, so the doctor was able to hear him using words and even putting 3-4 words together to make phrases/sentences. He did unfortunately have to get one immunization, but he did great with it! He cried for just a second, and then the nurse gave him a sucker and he was fine. Imagine that...a sucker makes everything better!!!

It is great to know that at least for today, both our boys are doing well!! Jason and I are learning very quickly to only live in the minute and not think too much about what the future will hold, especially for Colby, and today, we are happy!!!

Colby will go for another weight and sat check next week, as well as another visit to the cardiologist. At this cardiologist visit, we will hopefully find out if the pulmonary band surgery will be needed...it all depends on the degree of heart failure Colby is in and how much blood is flowing into his lungs. If there is too much blood flow, then we will need to go ahead with the surgery. We will keep you posted, and please keep Colby in your prayers!