Who's Who?

Several people have asked me if Colby looks like Brody. I don't think you understand just how much they truly do look alike. Sometimes, I feel like we have rewinded two years, and I am looking at Brody! A friend of ours (Kim Thomas) did this with her two little ones on her blog, and Jason and I thought this was a great way to show just how much our two boys do look alike. I know it is hard for some of you to believe that Brody was ever this skinny, but he was in the first couple months of his life!

Can you guess which baby is Brody and which baby is Colby?

Brody turns 2

Last Friday, August 22nd, Brody turned 2 years old! It is still so hard for me to believe that two years has passed! It seems like just yesterday that we were bringing him home from the hospital. Everyone always says, "they grow up too fast." We have learned that this is truly an understatement! I feel like he should still be my little baby sitting in his bouncey seat. Instead, he is all over the place! He went from being so dependent on us for everything to being Mr. Independent with a huge personality! There is not a day that passes that he does not make me and Jason laugh hysterically. I can't wait until he is making his little brother laugh as well!

To celebrate Brody's big day, close family and friends came over for a Mickey Mouse Clubhouse Celebration. Mickey Mouse Clubhouse is Brody's favorite show right now, only because of the Hot Dog Dance at the end. In fact, he thinks Mickey Mouse's name is "hot dog." We all had such a great time! Jason and I were of course exhausted, but it was so worth the extra time and energy to see the look on Brody's face and see him have so much fun! I'm glad that we were able to provide him with a party in the midst of our craziness! Since there were several people here, especially kids, Colby had to spend the party closed in our bedroom, with frequent visits from mom and dad of course. He was such a good boy through the party, sleeping the majority of the time!

Brody, we are so proud of you! You have grown so much in the past two years. In the few weeks leading up to your birthday, you have matured a lot...more than we ever expected. You are talking so much more (all the time!), sleeping in your "big boy bed," being a huge helper around the house and with Colby, and being an awesome big brother. We are so lucky that God blessed us with such amazing boys! We can't wait to see what you will do as you continue to grow! Happy 2nd Birthday Brody!!! We love you!!!

Colby's First Visit to the Cardiologist Office

This morning, we went for Colby's first clinic visit with Dr. Liske. All in all, it went pretty well! Colby is such a trooper...he didn't cry once! To start the visit, the nurse got his weight and height, did an EKG, and checked his sats. Then, Dr. Liske came in to check him out and speak with us.

For starters, Colby's pulmonary valve is continuing to narrow. This is good and bad. It is good, because as it narrows more, his congestive heart failure will improve. Congestive heart failure is mine and Jason's least favorite term...it sounds awful like his heart is just going to stop working. This is not what it means, though. In this condition the heart doesn't pump blood well enough for the body to get the nourishment it needs for normal work and activity. When the heart can't work as it should, fluid can build up in the lungs, causing labored breathing. Basically, congestive heart failure causes Colby to become very tired easily, have rapid or labored breathing, and have difficulty with feeding. This explains so much of what we have seen with Colby since coming home!

As I said, his pulmonary valve narrowing can also be bad, though. If it narrows too much, Colby can have some cyanosis (blueness). The blueness is caused by a lack of blood flow to the lungs. If this happens, then Colby will need a shunt procedure to improve the blood flow temporarily while we wait for him to get old enough and big enough to face the Bilateral Bidirectional Glenn (his first open heart surgery). We don't know if this will be necessary yet or not. We are just in a waiting game for now to see if it will narrow the right amount and then stop (which means no shunt) or if will narrow too much (which means the shunt). To monitor this, we will have weekly sat checks at our pediatrician office and regular follow ups with the cardiologist. In fact, we go back to the cardiologist in 2 weeks. His sats have dropped some since leaving the NICU. Today they were around 86 as opposed to the mid 90s. Dr. Liske wants to see them stay around 80 and go no lower. Now, I will be nervous every week when we check his sats!

Colby has gained some weight...he weighed in at 7 lb 1 oz today. While it is encouraging that he is gaining, it is discouraging that he is not gaining quite as rapidly as Dr. Liske would like for him to. With these heart babies, it is imperative that they get as big as possible before facing these surgeries! Again, Colby is having a hard time gaining because of the congestive heart failure. Taking his bottle is such hard work for him! He is burning calories trying to take in calories...as you can imagine, this doesn't work out so well. So, to help with his weight gain, Dr. Liske has instructed us to fortify my milk with formula. A nutritionist spoke with us today about how to do this. We just have to add a teaspoon of formula to 3 ounces of the breast milk. This takes my milk from 20 kcal/ounce (normal calories in breast milk) to 24 kcal/ounce. If he does well on the 24 kcal/ounce for 3 days, we are going to increase it to 27 kcal/ounce. Hopefully this will really help us fatten him up!

As for Colby's circumcision, it has been postponed temporarily! Dr. Liske wants us to wait until after his Glenn operation (the first open heart surgery). He thinks he will be much more stable and able to deal with this at that point. This will make him between 4 and 6 months old before we can do it, but the good news is that a urologist can do it and use sedation at that point. We are all about sedating him to have this little procedure done! Of course, after going through an open heart surgery, a little circumcision may not seem so bad to Colby.

I guess we are all doing well! Colby has been exhausted since we got back from the cardiologist this morning. Of course, I am pretty exhausted too, but we are all hanging in there. Tonight, we are planning to take big brother Brody out for a Birthday dinner!!! (I can't believe Brody is 2 years old today!!!!) Dr. Liske said as long as we keep people from touching Colby and keep him away from kids, we should be okay. With Colby's heart problems, he is not able to handle sickness like a "normal" baby would. We will have to be very careful with him for a long time...we need a little bubble to put him in! If you know me and how anal I am about germs, then you know this shouldn't be much different than I was with Brody!

Our First Few Days at Home

Wow!! The last few days have been so amazing for me! I cannot even express how happy it has made me having both our boys together. Brody has to be the best big brother in the world!! He absolutely adores Colby! It is so cute to see Brody try to comfort Colby with his paci when he cries, pat him on his back when I'm trying to burp him, and help hold the bottle when I'm feeding him. I hope Brody continues to love him, comfort him, and protect him!! Colby is a lucky boy to have Brody for a big brother!

Colby seems to be settling in to our home very nicely. For now, we have left him on the feeding schedule that the NICU established, which is every 3 hours. This seems to work pretty well for us, because it means that I only have to pump and feed Colby once by myself (Jason went back to work yesterday)...the other times, Brody is sleeping or Jason is home to help. Colby is still eating pretty well, which I am so glad of. Nursing is pretty difficult for him, so we have just been doing bottles for now. He still gets tired and out of breath with the bottles, but it is not nearly as bad as when he is nursing. As I have said before, whatever is best for Colby is what we will do!!!

Yesterday, Colby turned 2 weeks old, and we took him for his first pediatrician visit. Fortunately, he didn't have to get any shots...not that it would be anything new for him! Dr. Hudson said he is looking good. He weighed in at 6 lb 15 oz, which is up 5 oz from birth weight. Dr. Hudson seemed very pleased with this. At first, Jason and I were kind of worried, because he left the NICU Friday weighing 7 lb 12 oz. Apparently, he had a lot more swelling in his legs than we thought. The Lasix has cleared up his swelling now, which has caused him to weigh less. His little legs are so cute!! They are super skinny...I am going to have to fatten him up!! We also had his sats checked while we were there. We are excited to report that they are still hanging in the low 90's for now!!! That was a relief...I guess I had a fear that they would have dropped since we left the NICU!

All in all, we have had a great first few days at home! I'm so glad that we are starting to get into a routine now. I know this won't last long before I have to adjust to a new routine, though. You know how it goes...as soon as you think you have it under control, something changes!

A very smart friend of ours gave us the following advice recently, and it has really helped me get through the last week or so: "Allow yourselves to celebrate the good news and the victories. Try not to put yourself in the situation of "waiting for the other shoe to drop". Love him and live in the moment!!!" Thank you Amy Barton!!! This has helped me more than you will ever know. Jason and I are both loving every second of having both our boys at home to love on and enjoy! I am leaving the future in God's hands and not worrying about it!

Colby still has two more doctors' appointments this week. On Thursday, we have to take him back to the pediatrician for his circumcision (YIKES)...Vanderbilt would not do it for some reason! Friday, we go see Dr. Liske, our cardiologist. We are eager to see what he has to say about how Colby is doing. We'll keep you posted!

Thanks again for all of your encouraging comments and emails. We truly appreciate it and look forward to reading them each day. We are so blessed to have so many friends and family members praying for our little Colby! Thank you!

Finally Home

Today is the day that we have been praying for over the past days, weeks, and months. We were able to bring Colby home this afternoon. We weren't really sure if he was going to get discharged until the doctors came through mid morning. Colby's attending neonatal doctor that has been taking care of him since the day he was born was very happy to discharge us today. I would like to add that our overall experience at Vanderbilt Children's Hospital was nothing short of amazing. We spent a total of 12 days in the NICU and over those 12 days never had a negative experience with a doctor or a nurse. It is no surprise to us that the NICU was rated in the top 5% of children's hospitals in the country. We would like to thank the many nurses that cared for Colby for their unbelievable compassion and love for children. They played a big role in the peace that we felt during his stay.


Colby was able to come home without any surgical procedures, which is truly an amazing surprise. When we were originally told about Colby's condition, the doctor told us that there is a rare situation that occurs for a baby with his condition in which the baby does not require immediate surgery. Fortunately, we are that rare occurrence for the time being. He was also able to leave the hospital without any seizure medicine or antibiotics. He is taking a prescription for lasix which helps keep the fluid out of his lungs. He takes that medicine twice a day orally.... Not too bad considering the ride he has been on for the past 12 days.


The ride home today was a bag of mixed emotions. We were a little anxious to get him home, yet a little nervous since this was the first time he had been off all of his monitors. He was on his own. We were also anxious to get him home to meet his big brother. Since we did not get released until mid afternoon, Brody was taking a nap when we got home. This proved to be pretty good timing, b/c it allowed us to get into the house and most everything unloaded and or set up. When Brody woke up from his nap, we told him his little brother had come home. He looked up at Becca and said "Colby?" He came down stairs and saw his little brother sitting in a bouncy seat trying to catch a nap. He was soooo excited and gentle with Colby. It was truly more than we could have imagined. He wanted to touch and watch Colby all afternoon. Every time Colby made a sound Brody wanted to take him a pacifier. It was really cute watching him comfort his little brother. I am pretty certain he is going to be an amazing big brother once he realizes that Colby is here to stay.....



It has been such a blessing to have both of our boys home together this afternoon. We hope that we are able to keep them home together for 6 months before Colby has to go back to VUCH for surgery. We have been blessed in so many ways over the past 2 weeks.

Today is the Day...We Hope!

Colby had a pretty good day yesterday. He continued to maintain his body temperature on his own, no signs of any seizures, and he had his last dose of antibiotics for that possible infection. We are so glad that these other non-related heart issues have finally worked themselves out. Plus, since he didn't need any more antibiotics, they took the IV out of his head and gave him a bath! He is looking so good this morning!!

Yesterday also had some hard times for me and Jason, however. After almost 2 weeks of worrying about everything else, we have not had time to even think about the fact that he is a heart baby. He decided to remind us yesterday. His chest X-ray showed some fluid around his lungs, which is common with his heart defects. Basically, this makes it harder for him to breathe. I noticed it when I was trying to nurse him. After two days of great nursing, he just physically couldn't do it. So, we tried to give him a bottle, since it is so much easier for babies to take bottles (nursing is hard work for the babies!). He was able to drink it, but I could tell it was much harder for him. He would drink for a few seconds, then stop and take several fast breaths (like he is panting), and then he would drink a little more. I have to admit it is so very difficult for us to see him like this, even though we knew that this would probably happen. To help reduce some of the fluid in his lungs, the cardiologists prescribed Lasix (a diuretic) twice a day. Fortunately, this is a medicine that we can give him orally at home. It will hopefully help with his breathing, especially when he is trying to eat!

The cardiologists also informed us that his last echo, which was done on Wednesday, showed that he has not developed any stenosis. They were hoping for some evidence of this, because this is what will close his VSD (hole in his heart) a little to the right size. So, we are still at risk for needing that first surgery...the band. Jason and I are both just hoping that we can have him at home for a few weeks before this will be necessary. It would be nice if it weren't necessary at all, but we will see.

We are sitting here with Colby now waiting for the doctors to do their rounds and hopefully give us the final orders for discharge. I'm still not getting too excited just yet. We have learned anything can happen!!!

We will post again later, and hopefully it will be with pictures of our whole family of 4 relaxing at home!!!

Light at the end of the Tunnel

We decided not to post any new pictures today b/c one of our biggest fears for Colby became a reality this morning.... Over the past 5 months we have tried to prepare ourselves for what he might have to endure during this process of healing. The doctors had warned us from the very start that it might be hard to see him hooked up to all of the machines in the NICU. We had prepared ourselves for the worst and fortunately most of those fears have not become a reality. Becca and I were talking the other night about some of the things he had been able to allude during his stay in the NICU. Among that list was an IV in his scalp (that is "head" for my slow friends). Well that fear became a reality this morning. He had done so well over the last 9 days with his IV ports especially since they were able to hook up most of his stuff last week through the main line in his umbilical cord. Well they removed that line on Saturday so ever since then they have been using std IV ports. Apparently a typical port is only good/ functional in a baby for 3 days so they have run out of hands and feet to start new IVs so today as a last resort they had to put an IV port in his head. Permitting he doesn't need any additional meds that should come out Thursday or Friday AM. Even though he had to get the "Unicorn" port today he has been able to avoid a pic line as well as many other things typical in the NICU. So we are thankful.

Now for the good news.... This port was put in so he could finish his antibiotics that he started on Sunday to fight off a potential infection. He will finish up that round of meds tomorrow. So hopefully he will not have to take any additional meds after Thursday. Other good things that happened today...... They stopped his anti-seizure medication today at noon. We had hoped he would be able to stop taking that medicine before he went home. They decided to discontinue that medicine after they got his EEG report back this morning and were able to conclude that there were no signs of seizure activity and the brain appeared to be responding positively since his last seizure episode last week. They also told us that his body temperature appears to be stable. He has been off the warming bed since mid-day yesterday..... More progress.

Oh yeah Colby has done really well in the feeding arena as well. Might not surprise those that know his big brother Brody. Colby has gained just over a pound in the last week, which is really good for a NICU heart baby. I must credit Becca with this success b/c she has been diligent and patient in feeding him. Yes, she is the best mommy in town.

Conclusion of today's activity: no more positive cultures for infection, discontinue seizure medicine, and body temperature appears to be stabilizing.... These are all pieces to the "going home" puzzle. Tentatively the doctors are wanting to discharge Colby on Friday. Yeah!!!!!

Despite the Unicorn IV in his head, today was filled with great news and a lot of progress.
Colby's demeanor is a lot like Brody's calm, laid back, and happy. All of his nurses keep talking about how happy he acts and how laid back his temperament is. I guess he gets that from him awesome mommy.

We are so happy to see the light at the end of the tunnel. We are trying not to get our hopes up too much but at the same time we are pretty excited about the thought of having both our little boys at home together and it seems like it might be sooner rather than later. We will continue to pray that he doesn't have anymore setbacks yet we pray that he is stable and healthy when they do release him into our care. Apparently the doctors are judging our parenting skills on Becca's aptitude rather than mine otherwise Colby would be 18 before they released him.

We can't thank each of you enough for your diligence in prayer and support and we can not give enough credit to the healing hands of God. Despite the emotional roller coaster Becca and I have been on for the past 10 days there has never been a moment in which we felt alone or did not feel the loving touch of God.

1 Week Old

It is hard to believe that our little Colby is already a week old. It is even harder to believe that we are still in the NICU for things that have nothing to do with his heart! We have learned not to get too excited on the good hours/days, because there could always be another set back. But, we are still thankful that he is as healthy as he is...it could always be worse!

Here is what we have heard today from the doctors:

According to cardiology, Colby should not need any intervention on his heart until 4-6 months of age...I hope that this situation stays the same!

Neurology just finished another EEG to look for seizure activity. If it looks good, they are planning to take him off of the anti-seizure medication and see what happens. We will of course be here for a few days after discontinuing the medication for monitoring.

He is still having a hard time keeping his body temp up with no explanation. He is currently back in the warming bed. The doctor said this morning that he won't be able to come home until he can keep his temp up on his own. This temperature issue concerns them b/c he is not showing any other symptoms that should be related to other issues. It is our mystery of the day.....

To throw another twist to our Monday they told us late yesterday that he has shown positive for a blood infection. Given this test result they automatically started him on another round of antibiotics. They are testing him again to see if he is really fighting an infection or if it was a false positive. They have to get two negative tests back to confirm a false positive and these tests take days b/c they are cultured to see what kinda cool things they can grow.....

His appearance and temperament are great. Since they have lowered the dosage on his anti-seizure medicine little C has been more alert and active throughout the day which has been great. Colby continues to gain weight which is another awesome step in the right direction.

We have become addicted to checking for posts on the site b/c they are always so encouraging. Thanks to everyone for taking the time to keep up and sharing your encouraging thoughts and prayers. If you have any questions let us know in a post and we will answer them when we update.....

Thanks again for everything.....

Jason & Becca

The ride is slowing down?

Wow what a day.... The longest drive to Children's Hospital was by far this morning. There were so many unknowns and anxious expectations.

As we arrived at the hospital earlier this morning we tried to prepare ourselves for what was going to be going on. I guess the hardest part was knowing that when we left last night that Colby wasn't hooked up to anything except his monitors and yet a few hrs later we were going to be back on IV lines. As we walked up to his room we could hear his distinct little cry and noticed that there were a couple of nurses attending to him. As soon as we crossed the thresh hold of his room they asked us to wait back out in the reception area b/c they were trying to finish some things up which of course made us even more stressed. When we got back to the reception desk we saw one of our doctors and asked her what was going on she told us that everything was going to be OK..... Of course we wanted to see it to believe it. The Dr repeatedly told us that he was OK and she would come get us as soon as we could return to his room. 30 seconds later we were on our way to see Colby...

Within a few minutes we had been brought up to speed and the doctor was coming in to meet with us. He and his team were very optimistic in their tone as they re-assured us that he was doing OK. During our discussion they went through the list of possible causes for his middle of the night episode.... Of course most of the potential issues were not pleasant or things we wanted to discuss. At the end of the discussion he had given us his assessment and recommended solution. The preliminary assumption is that he should be back on track real soon and the festivities of the night were most likely caused by a change in his prescribed medications.....
He has continued to improve throughout the day and the nurses say he is doing great. We like to hear these great words come regarding our precious Colby.

Despite the chaos of the early morning things have slowed down as the day has progressed. So far all of the test results have been good and they have once again started removing support items from him. Hopefully he will be able to go home to see his big brother real soon.....

Thanks again for all of the prayers.... God has once again given us strength and courage through another rocky day.

As many of you lift up voices in prayer tonight on behalf of our family and Colby i would ask that you also remember the many other families that are riding this same roller coaster here at Children's hospital. Every time I walk back to our room I quickly remember how blessed we are and it really puts into perspective how well Colby is doing. We must continue to focus on God and remember that He has a plan and I am certain that He has great things in store for our lives through little Colby Chance.

Jason

Roller Coaster Anyone?

Have I mentioned this is like a roller coaster ride?

The quick run down on the last 12 hrs...... Colby got moved to Pod A which was awesome that is the step down NICU where babies go when they are doing better.... Becca fed him at his 11 PM feeding last night he wasn't much on nursing compared to his feeding at 7:30 but he still ate from a bottle. He was having some issue maintaining his body temp but it wasn't a huge concern they said that was pretty normal since he was no longer in the giraffe bed (the big NICU isolet bed). We put some clothes on him and wrapped him in some blankets and his nurse said he would be fine or she would put him back in the warmer bed. We headed home around 1:00 to catch a little sleep.
Becca called his nurse at 3:30 AM to see if his body temp had stabilized.... Hold on cause here comes the twist and hills....
The nurse told Becca she needed to talk to the on-call doctor. Colby had refused to eat a lot at his 2 AM feeding and had decided not to behave anymore (wasn't acting like Colby had been acting). They wanted to do another spinal tap to check to see if had an infection.... They moved him over to Pod I (regular NICU), put his catheter back in, started him back on IV fluids, put him back in a giraffe bed, scheduled him for another MRI, and started him on some antibiotics, and his SATS have dropped a little. Oh yes no longer in Posh Pod A.
Apparently Colby liked the attention he received in Pod F earlier in the week so he wanted to visit another "full service" Pod. The bright side... he is still seizure free since Tuesday and he is still doing pretty good from all we know right now....
Hopefully we will have more info soon. Please keep the prayers going.... Colby likes the attention.


Jason

Making Progress

Today has been a crazy good day.... Colby has continued to make progress here is the latest and greatest info....

Rounds today yielded the following: Colby has been eating really well, so they increased his feeding from 7 cc's Thursday to 15 cc's yesterday AM to 22 cc's last night, which he has loved every additional cc. These #'s sound pretty big, or they did to me, until the nurses explained that 22 cc's is 3/4 of an ounce.... All this to say that the doctor gave the orders this morning for them to feed him as much as he wanted.... We thought, wow, maybe he will keep up with the 22 cc's. His first all you can eat buffet feeding he ate 2 ounces...... Yes, he ate almost 3 times as much as they had been giving him. Apparently he is going to have his mother's appetite... Just kidding honey.

This was all pretty good news.... Then they took it a little further and told Becca she could start nursing. This could have been the happiest day thus far for mommy. She gets to hold and feed him without a bottle.

Today also added some good news about the seizures. He is still seizure free since Tuesday, so they are going to change his seizure medicine tonight to another med that will make him less drowsy.... We ask if they could put him back on the drowsy medicine when it is time to take him home.... Not sure they really liked that comment.

As of a few minutes ago Colby is line free. They have taken out all of his IV lines and his main lines in his belly button. The only things still attached are his monitor cables for pulse, oxygen levels, and respiration's.... Pretty cool b/c this makes it easier to hold him for those of his parents that are not scared (Becca). This was a pretty big step b/c this means he is not on as many meds and they feel he is at a lower risk to need a lot of meds moving forward. We are really excited about this progress.

Now for a little of today's humor.... I was blessed with my first Colby diaper change this AM. The nurse figured since this was my 2nd child that shouldn't be a problem.... Well as many of you know I can complicate drinking water. I get Colby ready for the new diaper and open the old diaper up to find a wet diaper. I was so excited that there wasn't any poop b/c the pressure was on since I had nurses and doctors to critique my diaper skills... No poop, yeah, forgot to pay attention to the fact that little boys like to pee when they are exposed to room temperature. Oh yes Colby created a shower for me.... All over himself, the blankets, his bed, the floor.... That a boy. The nurse then had to come change everything.
The next moment of humor came when Becca was nursing Colby for the first time. We were both so excited until the nurse went to put him back in the bed to find that he had pooped his pants, and up his back, on Becca's shirt, on Becca's pants, on his blanket, in his bed, and a little on the nurse..... Oh yes quite comical b/c if you notice I was the one thing not on the poop list.....

The last bit of good news just arrived. They have requested that Colby be moved to pod A. We are currently in Pod F (which has a great group of nurses) which is the std NICU where all of the sick babies go. Pod A is still in the NICU but it is for babies that are getting better. Pod A is a step in the direction of home..... Yeah, Colby is pretty excited.

What an awesome day the Lord has blessed us with. We hope to continue to make progress towards getting him released without and surgical procedures.

Please continue to pray for strength and healing.... but we also want to send up some prayers of thanksgiving and praise for all that He has already done for us and Colby this week. As we look around the NICU and see the many other babies around us we realize that we are blessed and Colby is doing pretty good.

Thanks again for all of your support. We hope to have this wild man home sooner rather than later.

Jason

Colby Days 3 and 4

I am so sorry that it has been so long since our last post! The last 2 days have been more of a race than anything...racing to and from the hospital to split our time between Colby and Brody has proven harder than Jason or I ever expected. I think the only time we have actually stopped is to sleep a few hours at night. Luckily, Jason has been great about going to the hospital to check in, even when I can't. At least that way, both our boys have one of us with them. I am truly blessed to have such an amazing husband!

Since I once again don't have much time (I'm playing with Brody at the moment), I will give you all the highlights of our last 2 days...

The biggest and most wonderful thing that has happened is that I was able to hold our little Colby for the first time on Wednesday afternoon!!!! Our awesome nurse, Melissa, was sweet enough to untangle all of his cords so that I could finally hold him. I can't even describe how wonderful this was after 2 very long days!! I could have just held him and stared at him for hours. As an added bonus, I got to give him his very first bottle as I was holding him! In fact, I gave him his first 2 bottles. He wasn't able to eat very much (only about a teaspoon), but he gulped it down! I hope this means he is going to be a great eater like Brody! Jason and I are both so encouraged that he is eating so well!

As far as his seizures are concerned, the doctors seem to think that they were caused by an oxygen deprivation that he experienced in utero 24-48 hours prior to his delivery. A lack of oxygen would explain his low BPP score Monday morning and his lack of movement. There is no way to know why he was deprived of oxygen...they said it could be a number of things. They do know for sure, though, that it is in no way related to his heart defects, which is why it was puzzling them so much. For now, they are going to continue giving him some anti-seizure medication, and we are going to pray that he has no long term damage from the oxygen deprivation or from the seizures!

The cardiologists are pleased with him, which is a true blessing! He does have a murmur, but they seem to think that we will still be able to leave the hospital without any heart intervention yet. We will of course be monitoring Colby very closely in the next few days/weeks/months, but our hope is that we will make it to close to 6 months of age before any open heart surgeries are needed. This will give us time to "fatten" him up and get him nice and strong!!

Colby has also been much more alert the last couple of times we have been with him. He seems to be awake a little more and really kicking his legs and grunting. He is definitely a grunter!! I am so happy to see his beautiful blue eyes!!!

I think that is all of our highlights from the last 2 days. It is hard to remember everything...our life is like a blur right now. We haven't really been given specifics on a discharge date for Colby, but our hope is sometime next week. We will definitely keep all of you posted on this.

Thank you all so much for your love, support, emails/comments, and prayers. Jason and I would not be able to do this alone. I know for sure that the only thing keeping me moving right now is God!

We will definitely post again soon...we won't wait so long like this time!

Becca and Jason

Season premier of House

For those that watch the Fox TV series House, that is how we felt yesterday morning. Colby's NICU doctor presented his case to the other doctors during morning rounds which included a ton of numbers and words that Becca and I didn't understand, which probably doesn't surprise those that know the simplicity of my mind..... The end result of rounds yesterday was that he was too healthy statistically to be having seizures? The attending doctor said his seizures had him "puzzled." I guess that was a good thing in a way b/c he wasn't showing any other signs or symptoms of other issues that are typically related to seizures.

They ran another EEG (the test showing electrical current in his brain) yesterday after rounds and it did not show any seizure activity (it had shown signs on Tuesday) which was a sign in the positive direction. They ran a MRI last night on his head to check for other causes of seizures. We do not have those results yet.... that kinda wraps up yesterday... not real eventful, which is another plus in the NICU.

We just got back from meeting with his doctors again this morning and things continue to be "trending" in the right direction.... Colby has been seizure free since Tuesday night. The doctors have decided to take him off his seizure medicine to see if he can stay seizure free without the meds. They are also going to try to feed him today. Becca has been a trooper pumping breast milk for him since he was born and that is going really good now. The nurses and doctors are very excited that he is going to get to start feeding today, especially since she has been pumping. Another great sign of Becca's strength and will power in that she has been staying up and missing little nap time opportunities to pump so he can have breast milk... Have I mentioned how awesome of a mom she is.....

We also met with Colby's cardiologist this morning and he is very optimistic that he might get to skip the first heart surgery b/c he is doing so well from a cardiology stand point. They will continue to monitor his heart activity and development and hope that nothing changes for the worse so he can maybe go home next week.

The main concern now that could hold him up from going home is the seizures. We hope to get results from the MRI today which will either tell us what is causing the seizures or what isn't causing them.

That is the general overview. All in all things are looking pretty good.... Thanks for all of the wonderful words of encouragement and the many prayers that have been lifted on our behalf. All praise to God for his continued support and healing hands. He has truly blessed us with great doctors, friends, and family. Despite the emotional roller coaster and the physical strain the last couple of days have been on Becca she has done really well and I credit her strength to God and each of you for your support.

Becca is getting released from the hospital today, so we will be getting her home to Brody. We will start our commuting to and from the NICU to be with Colby starting tonight.

Thanks again to each of you for everything. This is going to be a marathon and not a sprint, so we will continue to lean on many of you in the days and weeks to come. We will continue to post updates to let everyone know how Colby is doing.....

Please continue to pray for strength and healing for both Becca and Colby.....

Jason

Colby posing while napping

As promised here are some new pictures of Colby. He is doing good today.... Not to worry all of the wires you see are for monitors only.... They have him on some anti-seizure medicine and some antibiotics. Looks pretty good even if he is my kid.....

Brody and Colby

I wish I was writing tonight to let everyone know the answers to our seizure questions.... Unfortunately, that is not the case. Colby has probably had more tests run on him today than many of us have experienced in a life time. In fact as I sit in our room tonight there is a real good chance he is being transported from the NICU to get an MRI done on his head. As of 12:40 AM we still do not have any additional info or insight regarding the cause of his seizures.

Unfortunately, they have not miraculously stopped either. Apparently he experienced one this afternoon during one of the test and another one earlier tonight around 7:30. The good news is that he is in the right place to get help.... the bad news is that they still aren't sure why he is having them.....

On a brighter note I thought I would share a couple of photos of Big Brother Brody seeing pictures of his new little brother for the first time as well as a photo of Brody with the present Colby got him for becoming a new big brother. As low as the emotions have dipped over the past 36 hours can't express the highs of the emotions when Brody came to visit the hospital this afternoon. It was so good to let him see his mommy and to see pictures of his new baby brother on the computer. NICU rules keep him from going to see Colby so we figured we could introduce them via a little modern technology.

I was going to post some new pictures of Colby tonight but after I got them loaded I realized that they did not do him justice.... I will post some new photos of Colby tomorrow morning. We hope to get some updated info as well as the results from a lot of today's test from the doctors during morning rounds on Wednesday. In the event that we did not have enough doctors names and titles to keep up with Colby decided he wanted an additional team of doctors so he now has a neurology team working to find the cause of the seizures..... He is turning out to be a little high maintenance..... I wonder which parent he got that from..... Perhaps I should take a poll.... never mind I might not like the results....

Oh yeah and I want to be the last to wish my beautiful, loving, strong, and compassionate wife a Happy Birthday..... Her birthday was today Aug 5th. Happy birthday to the best wife and momma in the world....

Jason

Colby creates chaos

Please wait til the ride comes to a complete stop. Once the ride has stopped please lift the restraint bar are exit to the left..... Instructions for getting off the roller coaster ride we just started. It seams like we have been standing in line for this ride for the past 19.5 weeks and the ride finally started yesterday. Although the realities of the ride are beginning to settle in we are able to look around and still remember and appreciate how blessed we are.

Despite the chaos of yesterday Colby wanted to spice things up a little bit more today. After getting to bed a little after 2 AM the phone rings a little before 5 and it was none other than the nurse in the NICU.... Mr Hitchcock sorry to wake you but.....

Colby started having seizures early this morning. They were able to get them to stop initially with some light medication. They could not see a direct cause for them so they began running test. They did a spinal tap early this AM to check for infection or other causes. They are running an EG (electrical current test on his brain), an MRI on his brain, and some other test to see if they can figure out the cause of these seizures. He had another episode after they did the spinal tap so they are really looking for answers at this point.

I guess this is were the ride comes into play.... We have been "preparing" ourselves for heart issues over the past 20 weeks and little Colby said check it out here comes the curve ball..... seizures.

Luckily there is not a better place for him to be for care and supervision. We just met with the cardiologist and they said everything looked as they had expected. There were no surprises after his delivery and initial eco. They did explain that these seizures are not typical with heart defect babies which is why they have ordered so many test to figure out where they are coming from.

Becca was able to visit the NICU for the first time this morning which was great..... She was so excited to see him and touch him....

Details: 6lbs 12 oz 19.5" long full head of dark hair

We will post more when we have more.... Please continue to pray for God's healing hand to continue to hold Colby safe.

Thanks again for everything

Jason

Colby Chance chooses today

Well as many of you know Colby decided that he wanted his birthday to be on Aug 4th despite what the doctors and his parents had planned. The nurses took Becca back to the OR a little before 3:00 this afternoon to prep her for surgery (the c-section). They came to get me a in my "bunny suit" around 3:15. When I got into the OR the team began to assemble for little Colby's delivery. Everything went really well. They had Colby out and on the warmer for observation at 3:44. By the time he was delivered the team of doctors and nurses had grown to about 30 people most of them were there for Colby. The team of doctors and nurses were absolutely amazing.

Becca did really well through the whole process despite the rocky and emotional morning she had been through. She is by far the strongest wife in the world.

After they got Colby breathing and checked out they prepared to move him to the NICU at Children's Hospital. He was able to leave the OR without any support systems. Upon initial review he was doing great. A team of doctors and NICU nurses arrived to transport him over to Children's so I went along for the journey while they finished up with Becca. Upon arrival to the NICU they began doing additional tests and checking him out. The cardio team came in a few minutes later to check on his heart. After doing an ecocardiogram the doctors were pleasantly surprised to find that he was doing great. So far they have not planned to do any procedures. The attending said that they will know more over the next 48-72 hours regarding any specific needs he may have. So far things are going better than expected.

We want to thank everyone for the countless prayers and words of encouragement that have been passed along on our behalf. We could not have it this far if not for all of the support that many of you have given to our family.

Brody is doing great he has had a pretty fun filled day. He got to start his day off playing with "KatieJack" then Nanna came to pick him up for a little Nanna field trip before nap time. After nap he was visited by Mary Grace and "K-line" and they stayed till bed time so he thought this was one of the best days ever.....

Thanks again to everyone for your prayers, support, encouragement, love and kind deeds. We are truly blessed to be surrounded by so many great people. Most of all we must give thanks to God for getting us through this and blessing Becca and Colby with such a great team of doctors.

Sorry I don't have all of the normal daddy statistics that I should know.... I will get them tonight when I take Becca over to the NICU to see Colby. Once I have all of the baby specifics weight, length etc I will revise this post....


Thank You

Jason

Change of Plans

Well, apparently Colby is not willing to wait until Thursday to make his appearance. We should have known he would call the shots...just like his dad!!!

I came in for my weekly appointment and BPP this morning thinking it would be a normal day, but that quickly changed once the ultrasound began. Colby's heart rate was a little lower than normal, which was my first indication that something may be wrong. Then, we could not get him to move for anything. The sonographer was pushing him and sounding the alarm on my stomach, and he did not even flinch. Needless to say, this was very scary for me!! The sonographer was great and stayed very calm as he went to get the doctor, but I knew something was not right. At that point, I completely lost it!! The doctor came in and let me know that we would be having a baby today. Colby only scored 4 out of 8 on the BPP, which is not great. I was immediately brought to Labor and Delivery in a wheelchair. The whole way to L and D, I was trying to get Jason on the phone while crying hysterically. Doesn't that figure...the one appointment that Jason doesn't come to, something happens!

Anyways, L and D got me checked in, started monitoring Colby, and started my IV as soon as I arrived. The doctors came in to explain the C-Section, anesthesia came in, and the cardiologist has been notified. Now, we are just waiting until surgery time. Unfortunately, I had eaten a bagel on the way to the doctor, so anesthesia wants to wait 8 hours to start.

So, we should go back to the OR at 3:00, and Colby should be here by 4:00 this afternoon. Please say a prayer for a safe delivery and transport to the NICU. We will post again later this afternoon once he arrives.