This is the story of Cole... the second miracle God has blessed us with.
Cole just turned 1, on December 26th, the day after Christmas. Happy Birthday Cole!
Most of our family and friends know this already but for those of you who didn't know us back before Kaitlyn was born, we went through a really tough time. We had 3 miscarriages before we got pregnant with Kaitlyn. The doctors seemed to think that maybe I didn't have a lot of good quality "eggs" left or maybe I had a clotting disorder causing the blood flow to be restricted to the baby. Either way, we knew that time might be a factor.
Knowing that we wanted more children, we decided to try for a 2nd child when Kaitlyn was about 7 months old. At that time we had no clue that Kaitlyn had Niemann-Pick Disease.
When Kaitlyn was about 8 months old, the doctors started questioning whether Kaitlyn could possibly have a genetic disorder. With this new knowledge, we immediately stopped trying to get pregnant- knowing that if it was genetic, it could effect a second child. Kaitlyn had blood drawn and was tested for a number of genetic disorders. The results took over 2 weeks to come in.
Even though we had stopped trying to get pregnant, on Thursday April 22nd, 2010, we found out that I was pregnant! I can't even begin to explain how excited we were and nervous at the same time with my history of miscarriages. The very next day, on Friday April 23rd, 2010, we got the call that Kaitlyn had Niemann-Pick Disease, Type A. A lifespan averaging between only 2 and 4 years old. My heart was shattered.
We went from being thrilled on Thursday to devastation on Friday. I remember it all too well. The phone call from Chip. Not only was our precious daughter going to die, the baby we just found out that we were pregnant with had a 1 in 4 chance of also having Niemann-Pick disease and dying as well, leaving us childless.
We decided not to test the baby, since there was a miscarriage risk with any of the testing procedures and we knew that this would most likely be our last child. We just couldn't take that risk just for the sake of knowing. I also figured it would be better if I found out after the baby was out of me in case I got the news that both my children were going to die. It wouldn't have been healthy for the baby to have a complete mental breakdown while pregnant!
Surprisingly, we were so busy with Kaitlyn, moving from Texas to North Carolina, and finding a new team of doctors in Charlotte that during much of my pregnancy I was "somewhat" distracted from the fact that our baby could have NPD. We were still trying to absorb the fact that Kaitlyn had NPD. Later during pregnancy, we talked with the doctors about our plans if the baby did have NPD. We decided that we would have the cord blood tested for NPD and if it came back positive, we would go to Duke University and have a cord blood transplant. The transplant wasn't proven 100% effective but it was the only hope we had in saving our baby if he had NPD.
After Cole was born, it took what seemed like FOREVER to get the test results back. I remember waiting on the phone with his pediatrician's office because they were looking for his chart. I remember feeling like this phone call was literally "life or death". The nurse came back on the line and told me that she couldn't find his chart but she knew that the results had been faxed in so if I could just hold on for another minute, she would check again. I can't tell you how long those minutes were knowing that finding out what our future had in store for us was only a few minutes away. She finally got on the phone and read the results. He does NOT have NPD, but he IS a carrier though just like Chip and I are, but he is going to be okay. I immediately started tearing up and looked at Chip and said "He's okay". It was one of the best days of my life!
Cole has been such a miracle, from us getting pregnant with him at the very last chance possible to bringing so much joy into all of our lives. He is such a happy little guy and has made many difficult days a lot better with his sweet smiley self.
We are beyond blessed to have him and he is such a good brother to Kaitlyn. When she cries, he gets worried and sometimes cries too. When her alarm goes off on her pulse/ox monitor, he stops what he's doing and comes over to check on her. He is really in tune with what's going on and loves his sister so much. When he was younger they would hold hands and smile at each other. Now he leans over and "kisses" her hand or arm without even us telling him to. He is also an endless source of entertainment for Kaitlyn. Although I think she could do without his love of drums! :-)
We are so proud of him and love him so much more than words can express. We talk so much about Kaitlyn on here that I wanted to share Cole's story and what a miracle he IS too!
Check out Cole's monthly photo with his bear from when he was a baby up until now! Click here.
 |
| Check out all that snow outside! (December 26th, 2010) |
Cole just turned 1, on December 26th, the day after Christmas. Happy Birthday Cole!
 |
| Birthday Boy! |
Most of our family and friends know this already but for those of you who didn't know us back before Kaitlyn was born, we went through a really tough time. We had 3 miscarriages before we got pregnant with Kaitlyn. The doctors seemed to think that maybe I didn't have a lot of good quality "eggs" left or maybe I had a clotting disorder causing the blood flow to be restricted to the baby. Either way, we knew that time might be a factor.
 |
| Meeting Cole for the first time in the operating room. |
When Kaitlyn was about 8 months old, the doctors started questioning whether Kaitlyn could possibly have a genetic disorder. With this new knowledge, we immediately stopped trying to get pregnant- knowing that if it was genetic, it could effect a second child. Kaitlyn had blood drawn and was tested for a number of genetic disorders. The results took over 2 weeks to come in.
 |
| Our first family photo- all 4 of us! |
 |
| April 13th, 2010 |
Even though we had stopped trying to get pregnant, on Thursday April 22nd, 2010, we found out that I was pregnant! I can't even begin to explain how excited we were and nervous at the same time with my history of miscarriages. The very next day, on Friday April 23rd, 2010, we got the call that Kaitlyn had Niemann-Pick Disease, Type A. A lifespan averaging between only 2 and 4 years old. My heart was shattered.
We went from being thrilled on Thursday to devastation on Friday. I remember it all too well. The phone call from Chip. Not only was our precious daughter going to die, the baby we just found out that we were pregnant with had a 1 in 4 chance of also having Niemann-Pick disease and dying as well, leaving us childless.
 |
| Saturday, April 25th, 2010, we didn't know what to do... so we went to the zoo. |
We decided not to test the baby, since there was a miscarriage risk with any of the testing procedures and we knew that this would most likely be our last child. We just couldn't take that risk just for the sake of knowing. I also figured it would be better if I found out after the baby was out of me in case I got the news that both my children were going to die. It wouldn't have been healthy for the baby to have a complete mental breakdown while pregnant!
 |
| October 2010, Kaitlyn sitting on the Cole-bump! |
Surprisingly, we were so busy with Kaitlyn, moving from Texas to North Carolina, and finding a new team of doctors in Charlotte that during much of my pregnancy I was "somewhat" distracted from the fact that our baby could have NPD. We were still trying to absorb the fact that Kaitlyn had NPD. Later during pregnancy, we talked with the doctors about our plans if the baby did have NPD. We decided that we would have the cord blood tested for NPD and if it came back positive, we would go to Duke University and have a cord blood transplant. The transplant wasn't proven 100% effective but it was the only hope we had in saving our baby if he had NPD.
 |
| November 2010 |
 |
| November 2010 when we let everyone know that his name would be Cole... we were getting "Cole" for Christmas! |
After Cole was born, it took what seemed like FOREVER to get the test results back. I remember waiting on the phone with his pediatrician's office because they were looking for his chart. I remember feeling like this phone call was literally "life or death". The nurse came back on the line and told me that she couldn't find his chart but she knew that the results had been faxed in so if I could just hold on for another minute, she would check again. I can't tell you how long those minutes were knowing that finding out what our future had in store for us was only a few minutes away. She finally got on the phone and read the results. He does NOT have NPD, but he IS a carrier though just like Chip and I are, but he is going to be okay. I immediately started tearing up and looked at Chip and said "He's okay". It was one of the best days of my life!
 |
| He loves his big sis so much! January 2011 |
Cole has been such a miracle, from us getting pregnant with him at the very last chance possible to bringing so much joy into all of our lives. He is such a happy little guy and has made many difficult days a lot better with his sweet smiley self.
 |
| Snuggle-bug |
We are beyond blessed to have him and he is such a good brother to Kaitlyn. When she cries, he gets worried and sometimes cries too. When her alarm goes off on her pulse/ox monitor, he stops what he's doing and comes over to check on her. He is really in tune with what's going on and loves his sister so much. When he was younger they would hold hands and smile at each other. Now he leans over and "kisses" her hand or arm without even us telling him to. He is also an endless source of entertainment for Kaitlyn. Although I think she could do without his love of drums! :-)
We are so proud of him and love him so much more than words can express. We talk so much about Kaitlyn on here that I wanted to share Cole's story and what a miracle he IS too!
 |
Check out Cole's monthly photo with his bear from when he was a baby up until now! Click here.
Such a great story! Thank you for sharing!
ReplyDeleteDeanna, What a great post! I will never forget that Thurs and Fri. in April. It changed my life forever. Kaitlyn and Cole are both sweet, precious angels. I am proud to be their aunt. Love you always, jess
ReplyDeleteI just wanted to tell you that you are all a light in God's eyes. Your family is in my prayers. May God wrap His arms around you through the rough days ahead.
ReplyDeleteYour children are beautiful. I love Kaitlyn's curls so pretty. My prayers are with you and your family.
ReplyDelete