Hello everyone! We have a few days to catch up on and some good news to share!
October 20
Colby has officially been moved to a big boy bed! He is able to hold his own body temperature well enough now that he is in the little plastic tubs that they bring a full-term baby to your room in!!!! Whoo Hoo!!! The nurses have been working with him at feeding time and trying to get him used to drinking from a bottle! He is doing one feeding per day (trying to get him used to it) and he drank 7 CCs today!!! PRAISES!!! He is getting to be such a big boy! He weighed 4 pounds 7 ounces!!
October 21
Mommy got to feed Colby today and he drank about 5 CCs from his bottle. (I would blame most of this on Mommy since this is a little different than with Ainsley. I am still learning how to help him figure this out!) He was opening his eyes a bit more today. Dr. Parma stopped by and checked on his eyes---the right eye is getting better and the left eye is still the same. Yeah for the right eye!!! The dr said it could take up 3-4 weeks to see results in the left eye so please keep the prayers going!!! He was up to 4 pounds 8 ounces tonight!
October 22
Had a quiet visit today---he was sleeping so we just sat and talked with him. When I checked on him that night I talked with Brandi. She had given him his first real bubble bath in the little pink tubs!!! She unhooked him from everything for a little bit!!! Whoo Hoo! He wasn't very happy about the bath and cried for most of it. But she had him off the cannula for a little while and he did pretty good without it! BIG BABY STEPS!!! He was up to 4 pounds 9 ounces and Brandi was going to try and feed him with the bottle again at midnight.
October 23
Lots of visitors today! Don and Lewies came to visit for a few minutes. Lewies sang to Colby in his native language (Lewies is from South Africa) when he started to get fussy and Colby seemed to like it! Which doesn't bode well for Colby since I can't speak the language or even sing for that matter! Talked with Billie, his nurse, and found out that Colby drank 23 CCs with his midnight bottle and this morning he drank all 35 CCs with his therapist!!! WOW!!!! What a big boy! Now they are giving him two bottles each day I think??? Will have to check on that one. Grams went up after work and Colby had another bottle at 6pm and drank almost all of it!! So excited by this progress!
I AM GOING TO ADD SOME MORE PICTURES AS WELL SO MAKE SURE TO CHECK THOSE AND SEE HOW OUR BABY BOY IS GROWING!!!!
This last week and a half has been very hectic/stressful for me and I just want to thank all of you out there for the prayers and encouraging words. Seeing the comments on Facebook and on this blog are so inspiring for us. They are the best thing for me to go back and read when I am having a rough day. Please keep the messages coming---it fuels my heart and my faith!
God Bless,
Brie
Tuesday, October 23, 2012
Friday, October 19, 2012
Eye Update 2
I'm sorry we have not updated sooner. This is what is going on with Colby's eyes. When Dr. Parma performed the laser surgery last Friday he had a very hard time seeing what he was supposed to burn off because of a lack of pigment in Colby's retinas. Because of this and the severity of the ROP in Colby's eyes the laser was not as effective in his left eye as it was in his right eye. The vessels were continuing to grow angrily causing them to bleed and preventing the pupil from dilating so that Dr. Parma could get a good look at what needed to be done next. It put us in a situation where our only chance at stopping the vessels from causing retinal detachment was to give an injection of a IVAV (Intravitreal anti-VEGF) drug called Avastan.
When babies are born prematurely their bodies will sometimes stop producing the blood vessels that it needs to take oxygen to the retina for proper development. When the body realizes that it is not producing these vessels it creates a chemical called VEGF (Vascular Endothelial Growth Factor) so that it will start producing vessels. The problem is this chemical makes the vessels grow abnormal and then ROP sets in.
Depending on the severity of the ROP there are different treatments that can be done to stop the process. In Colby's since the laser surgery didn't work our next step is the injections.
The purpose of the injections is to do the same thing as the laser. It is supposed to kill of the VEGF hormone so that it will stop the blood vessels from growing out of control. Dr. Parma performed the procedure Thursday night and was successful in administering the drug. He will look again Sunday at both eyes to see if the left eye is responding to the injections and to make sure the right eye is still maintaining stability. There is still the possibility that the right eye will have the same problems as the left and require the injections. After his examination Sunday he will know a little more about the next steps, whether it be more injections or more laser surgery.
I know we have said it many times but I cannot express how grateful we are to be surrounded by so much love and support from family and friends. This journey has been so emotionally, physically and mentally exhausting and without you all we would never make it. We know God's plan is perfect and we pray everyday that His will be done.
When babies are born prematurely their bodies will sometimes stop producing the blood vessels that it needs to take oxygen to the retina for proper development. When the body realizes that it is not producing these vessels it creates a chemical called VEGF (Vascular Endothelial Growth Factor) so that it will start producing vessels. The problem is this chemical makes the vessels grow abnormal and then ROP sets in.
Depending on the severity of the ROP there are different treatments that can be done to stop the process. In Colby's since the laser surgery didn't work our next step is the injections.
The purpose of the injections is to do the same thing as the laser. It is supposed to kill of the VEGF hormone so that it will stop the blood vessels from growing out of control. Dr. Parma performed the procedure Thursday night and was successful in administering the drug. He will look again Sunday at both eyes to see if the left eye is responding to the injections and to make sure the right eye is still maintaining stability. There is still the possibility that the right eye will have the same problems as the left and require the injections. After his examination Sunday he will know a little more about the next steps, whether it be more injections or more laser surgery.
I know we have said it many times but I cannot express how grateful we are to be surrounded by so much love and support from family and friends. This journey has been so emotionally, physically and mentally exhausting and without you all we would never make it. We know God's plan is perfect and we pray everyday that His will be done.
Thursday, October 18, 2012
Eye Update
Brie and I are at Dr. Parma's office this morning. Dr. Parma has informed us that Colby's left eye has not responded to the laser therapy as it should. His left eye has some hemoraging and the pupil will not dilate enough so that he can get a good picture of the retina. It also looks like the blood vessels are continuing to grow abnormally. We are here to discuss the use of injections in that eye to stop the abnormal growth. I will post again once we have more information.
Please pray now for continued healing. Please pray for wisdom for us and the doctor. Please pray for strength.
Wednesday, October 17, 2012
Playing Catch Up Again...
It has been awhile since I have had a chance to update but I have some people asking so I wanted to make sure I had time tonight. :) Here are some highlights for the last few days!
October 13, 2012
-Came off his ventilator and back onto his CPAP that morning and by that evening he was off that and back on his High Flow Cannula!!! He did such a good job of getting of the ventilator quickly.
-By the afternoon he was back to eating 10 CCs. By 9pm he had moved up to 20 CCs!!
October 14, 2012
-Up to 30 CCs of formula by 9am!!!! Yeah!!!
-Daddy and Mommy took Ainsley up to see Colby today. She had to wear a mask which she thought was weird and then decided it was fun. We got to hold a sleepy Colby who de-SATed and bradyed a few times.
-By the evening time they had upped his feedings to 35 CCs!!! Whoo Hoo!
-Colby decided to misbehave and he pulled his feeding tube out!! Silly boy!
October 15, 2012
-Colby was finally deciding to really wake up---it takes a few days after surgery for all the medicine to get completely out of his system. He had a really good day with very few de-SATs and bradys!
October 16, 2012
-Daddy took Aric to visit Colby today and when they got over to his bed he had pulled out his cannula and had it in his mouth chewing on it! :)
-Mommy went up later and got to hold him for quite awhile. He decided to brady while I was holding him and of course I freaked out. I tried patting his little bottom and talking to him and Elizabeth came over (calm as can be mind you) and just rubbed his head and talked to him and he started breathing again. The second time he did it, I was a little calmer and was able to bring him around.
-He was back to weighing 4 pounds 2 ounces! Whoo Hoo!
October 17, 2012
-Jason and I had a lovely visit today. He was very active while we were holding him. He was hungry and kept gnawing on his pacifier. We had to put him back in his bed so we could go back to work and I tried to make sure that he was situated so his pacifier would stay in but I don't think I did a good job!
Thank you for all your prayers. We are amazed daily when we hear about people following Colby's journey. He is such a blessing to our family!
Brie
October 13, 2012
-Came off his ventilator and back onto his CPAP that morning and by that evening he was off that and back on his High Flow Cannula!!! He did such a good job of getting of the ventilator quickly.
-By the afternoon he was back to eating 10 CCs. By 9pm he had moved up to 20 CCs!!
October 14, 2012
-Up to 30 CCs of formula by 9am!!!! Yeah!!!
-Daddy and Mommy took Ainsley up to see Colby today. She had to wear a mask which she thought was weird and then decided it was fun. We got to hold a sleepy Colby who de-SATed and bradyed a few times.
-By the evening time they had upped his feedings to 35 CCs!!! Whoo Hoo!
-Colby decided to misbehave and he pulled his feeding tube out!! Silly boy!
October 15, 2012
-Colby was finally deciding to really wake up---it takes a few days after surgery for all the medicine to get completely out of his system. He had a really good day with very few de-SATs and bradys!
October 16, 2012
-Daddy took Aric to visit Colby today and when they got over to his bed he had pulled out his cannula and had it in his mouth chewing on it! :)
-Mommy went up later and got to hold him for quite awhile. He decided to brady while I was holding him and of course I freaked out. I tried patting his little bottom and talking to him and Elizabeth came over (calm as can be mind you) and just rubbed his head and talked to him and he started breathing again. The second time he did it, I was a little calmer and was able to bring him around.
-He was back to weighing 4 pounds 2 ounces! Whoo Hoo!
October 17, 2012
-Jason and I had a lovely visit today. He was very active while we were holding him. He was hungry and kept gnawing on his pacifier. We had to put him back in his bed so we could go back to work and I tried to make sure that he was situated so his pacifier would stay in but I don't think I did a good job!
Thank you for all your prayers. We are amazed daily when we hear about people following Colby's journey. He is such a blessing to our family!
Brie
Friday, October 12, 2012
Post Surgery Report
Colby is doing well after the surgery. I only talked with Dr. Parma briefly after the surgery and got a quick explanation of the surgery and what will take place in the next few weeks.
To give a little background, all premature babies are at risk for ROP (Retinopathy of Prematurity). ROP is the abnormal blood vessel development in the retina of the eye in a premature infant. There are several stages of ROP ranging from mild abnormal growth to total retinal detachment. There are many other terms like "Plus Disease" and "Threshold Disease" which are factors in the severity of the ROP. When ROP is considered the eye is broken into three zones and depending on which zone the blood vessels get to before they begin to grow abnormally will help determine the severity of the vision loss.
In Colby's case his blood vessels got in to zone two of the eye and stalled. The stalling of growth is generally a good indicator that ROP is present and that some treatment will have to be done. That is when Dr. Parma started looking at Colby's eyes more regularly. This week Colby's eye rapidly moved into stage three ROP, which concerned Dr. Parma, and ultimately caused him to come to the conclusion that laser surgery was necessary. The laser surgery is used to stop the overgrowth of unhealthy vessels on the retina by making small burns on the parts of the retina that are affected by ROP. In order to preserve central vision, some periferal vision may be lost as a result of the laser surgery.
Colby went in to surgery today at 4:30 and it took more than an hour per eye to get the laser treatment completed. The surgery is normally a 20 to 30 min process but along with all the other things working against him, he has what is called a blonde fundus which made the surgery that much more difficult. Blonde fundus means the retina has less pigment than others making it much harder for the doctor to see what he needs to burn with the laser. At close to 7:00 tonight Dr. Parma called to say that the surgery was complete and that he believes that he got everything that he needed. He believes that after looking at Colby this week that he did the surgery at the perfect time for the best end result. When I talked to Dr. Parma it was one of those moments where all your are waiting for is him to say everything is OK. He did a good bit of explaining that I didn't fully grasp because I was waiting for the results. We will be talking to him further in the next few days so I will get a better explanation of everything later.
While we were visiting tonight we had the task of trying to wake him up from his sedation. We got to play with his hands and feet trying to get him to wake up. They had to put him back on the ventilator for the surgery and they want to get him back off as soon as possible so he doesn't get attached to it.
We give all the praise to God that Colby has come through this surgery with success. I want to thank Dr. Parma for taking great care of Colby. He is truly a man of God who cares deeply for the babies that he treats. I want to thank all the Baptist South NICU nurses who helped with the surgery and who take care of him everyday. We are truly blessed to have you all in our lives. I also want to thank all of our family and friends. The support we receive from you all lifts us up every day and keeps us going.
To give a little background, all premature babies are at risk for ROP (Retinopathy of Prematurity). ROP is the abnormal blood vessel development in the retina of the eye in a premature infant. There are several stages of ROP ranging from mild abnormal growth to total retinal detachment. There are many other terms like "Plus Disease" and "Threshold Disease" which are factors in the severity of the ROP. When ROP is considered the eye is broken into three zones and depending on which zone the blood vessels get to before they begin to grow abnormally will help determine the severity of the vision loss.
In Colby's case his blood vessels got in to zone two of the eye and stalled. The stalling of growth is generally a good indicator that ROP is present and that some treatment will have to be done. That is when Dr. Parma started looking at Colby's eyes more regularly. This week Colby's eye rapidly moved into stage three ROP, which concerned Dr. Parma, and ultimately caused him to come to the conclusion that laser surgery was necessary. The laser surgery is used to stop the overgrowth of unhealthy vessels on the retina by making small burns on the parts of the retina that are affected by ROP. In order to preserve central vision, some periferal vision may be lost as a result of the laser surgery.
Colby went in to surgery today at 4:30 and it took more than an hour per eye to get the laser treatment completed. The surgery is normally a 20 to 30 min process but along with all the other things working against him, he has what is called a blonde fundus which made the surgery that much more difficult. Blonde fundus means the retina has less pigment than others making it much harder for the doctor to see what he needs to burn with the laser. At close to 7:00 tonight Dr. Parma called to say that the surgery was complete and that he believes that he got everything that he needed. He believes that after looking at Colby this week that he did the surgery at the perfect time for the best end result. When I talked to Dr. Parma it was one of those moments where all your are waiting for is him to say everything is OK. He did a good bit of explaining that I didn't fully grasp because I was waiting for the results. We will be talking to him further in the next few days so I will get a better explanation of everything later.
While we were visiting tonight we had the task of trying to wake him up from his sedation. We got to play with his hands and feet trying to get him to wake up. They had to put him back on the ventilator for the surgery and they want to get him back off as soon as possible so he doesn't get attached to it.
We give all the praise to God that Colby has come through this surgery with success. I want to thank Dr. Parma for taking great care of Colby. He is truly a man of God who cares deeply for the babies that he treats. I want to thank all the Baptist South NICU nurses who helped with the surgery and who take care of him everyday. We are truly blessed to have you all in our lives. I also want to thank all of our family and friends. The support we receive from you all lifts us up every day and keeps us going.
Eye Surgery in Progress
The nurse called about 4:30 to let us know they were taking Colby back to start the surgery. Please pray that Colby behaves for Dr. Parma. Please pray for wisdom and focus for Dr. Parma and the nurses.
Thursday, October 11, 2012
Please pray-Eye Surgery scheduled
Dr. Parma called me just a little while ago and informed me that he has seen a little growth in Colby's eyes (Praises!!!!! for even the little bit of growth that he saw) but that it was the time to do surgery. He is scheduled to have surgery tomorrow between 12 and 5:30...not sure when exactly. They will put him back on the ventilator for a short period of time and he will be put to sleep for about an hour to an hour and a half. The laser surgery itself will only take about 20 minutes but prepping and such will take a little longer.
Dr. Parma will actually be doing one surgery now and leaving some area untouched in the hopes that Colby's eyes will continue to grow a little bit more. Every little bit of growth helps with his peripheral vision and it is very important to give him as much of a chance as possible to see more.
We feel very comfortable with Dr. Parma and trust his decisions. Please pray for Colby---especially his eyes---over the next few days. We need our prayer warriors!!! :)
God Bless each and every one of you!
Brie
Dr. Parma will actually be doing one surgery now and leaving some area untouched in the hopes that Colby's eyes will continue to grow a little bit more. Every little bit of growth helps with his peripheral vision and it is very important to give him as much of a chance as possible to see more.
We feel very comfortable with Dr. Parma and trust his decisions. Please pray for Colby---especially his eyes---over the next few days. We need our prayer warriors!!! :)
God Bless each and every one of you!
Brie
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