2010 - It was the most challenging but rewarding year of my life. I have been faced with many different emotions since I found out I was pregnant with Jordan on Jan 28th, 2010. The day I took the positive pregnancy test I was the happiest girl EVER! My dream had come true to be a mama - the one thing I knew I had always wanted out of life was to be a parent. We went for the twenty week ultrasound on May 21, 2010 to find out if it was a boy or girl. But considering I work in Radiology I already knew it was a boy. That day the tech said she couldn't get a good view of the heart. Well I had never heard of congenital heart defects - I let a friend of mine scan me and she told me she thought it was HLHS. We already had plans to go to the beach that weekend so I agreed to go on with the plans. Not a second went by that I was not looking up research and worrying day in and out. We went to Atlanta on June 2nd and Jordan was diagnosed by the cardiologist with HLHS my world was shattered that day. The baby boy I had always wanted would have to suffer his entire life - Not a day went by that I didn't cry, pray and even wonder would he even make it. I would find myself looking into the room where his nursery would be and thinking do we even make it a nursery? With the courage of our supportive family and friends we set up the nursery and took the chance that Jordan would be a fighter.
On Sept 29, 2010 we were told it was a nice day for traveling and we needed to head up to Atlanta to birth the little miracle child. We were scared to death and had no idea what to expect but we just prayed and trusted God with every bit of our souls. I had the most wonderful experience at Northside and Jordan was born on Oct 1, 2010 at 6:37pm. Once he was born they took him to the NICU immediately, we finally got to see him around 11:00pm that night. It was love at first sight. Everyone had always told me you will never feel love like this until you have your own... Well they were right! That night I don't think I slept for a minute. All I could think about were the days ahead and what all Jordan would face. They took him to Children's that morning and I finally got to see him around 9 pm that night. He was so precious... there were many tears, fears and times of rejoice for the next 16 days. I fell back on my faith and let God take control and he did an AWESOME job. Once we were home we found our routine and fell more in love with this amazing child. On Oct 25th we were in Atlanta for a routine check up when we found ourselves faced with another bump in the road. Jordan's shunt was restricted and he needed an emergency heart cath. What was supposed to be a small procedure turned out to be another open heart surgery and 12 days in CICU. But with the help of God and many prayers from people all around the world we were back home on Nov 6th. Ever since then we've had many doctors appointments and home health visits but I would not do one single thing any differently.
We have enjoyed the holidays with our families and friends. He was the best Christmas gift ever and he even brought in the New Year with us wide awake. It was like he knew he wanted to be awake at midnight. He had been asleep but once we put him in his bed he was wide awake from 11:45 until 12:15. It was the best New Years I have ever celebrated being able to kiss my precious little boy.
2011 - We will face many more challenges and times of letting God take control and trusting in him for all the fears we may face. Jordan is scheduled for his first routine heart cath on Jan 6th. We are scared to death but we also know he is a little fighter and God will hold his hand the whole time. Please pray for Jordan as he faces the heart cath in January and his Glenn procedure (3rd open heart surgery) in February if the results from the cath are good.
Thanks for every ones prayers, support and love in 2010 - We hope everyone had a safe New Year and send you all best wishes for a Happy and Healthy 2011~
Thank you for coming here to support our family through this exciting but challenging period of our lives. As most of you are already aware, Jordan was diagnosed with Hypoplastic Left Heart Syndrome. We have set up this site to help keep our family and friends informed through the birth and surgical procedures of Jordan's life.
Monday, January 3, 2011
Wednesday, December 15, 2010
December 15, 2010
Jordan weighed 10 lbs 7 oz at the doctor yesterday morning. He is busting out of his clothes. We can't believe it is almost Christmas. We said we were not going to get him a bunch of toys for Christmas.....oops, well he "needed" them. He is smiling and kicking his legs like crazy. He likes to play with his rattles and watches lights a lot. He loves a ceiling fan!
We have been so lucky so far avoiding him getting sick with this crazy Georgia weather. We are dreading the first of the year since Jordan will have a heart cath. that week. So far they say the next surgery will be in February. He is growing and progressing really well so things should stay on schedule. Keep the prayers coming and always include all of the other heart babies and their families. This has been a tough road. We have tons to be thankful for this holiday season.
We have been so lucky so far avoiding him getting sick with this crazy Georgia weather. We are dreading the first of the year since Jordan will have a heart cath. that week. So far they say the next surgery will be in February. He is growing and progressing really well so things should stay on schedule. Keep the prayers coming and always include all of the other heart babies and their families. This has been a tough road. We have tons to be thankful for this holiday season.
Christmas Update
I can't believe it has been so long since I last posted. I always say I am going to post on the blog but something always comes up. We are getting ready for Christmas and enjoying every second with Jordan. I was so excited about getting our Christmas tree up so he could see the lights...he would rather look at the ceiling fan. Even though he has NO idea that Santa is coming to see him... it's exciting for me. Our first Christmas as a family... A blessing and miracle from God.
Jordan is really doing well... we are continuing to see the cardiologist and pediatrician. Home health care comes weekly and he will be starting physical therapy. When we went for the evaluation last week to see where he needs to be the lady said he was doing great. She gave him two spoons to hold in each hand. She said it difficult for babies to do something with both hands. He wouldn't hold both of them but by the end of the weekend he was holding one in each hand. I want to do everything in our power to make sure he is meeting his milestones. He doesn't like "tummy time" but we try to make him do it for a couple of minutes everyday. He has started smiling, reaching for objects and kicking. I tell him all the time he is getting ready to kick start his motorcycle. He loves to take a bath... He will lay there and kick and swing his arms. I have started letting him bathe with me in the big tub and he loves it. He could be in the middle of screaming crying and we get in the tub and he is a totally different child. He will start smiling and kicking. I keep telling him I will teach him how to swim in the tub when he gets a little older.
Jordan is really doing well... we are continuing to see the cardiologist and pediatrician. Home health care comes weekly and he will be starting physical therapy. When we went for the evaluation last week to see where he needs to be the lady said he was doing great. She gave him two spoons to hold in each hand. She said it difficult for babies to do something with both hands. He wouldn't hold both of them but by the end of the weekend he was holding one in each hand. I want to do everything in our power to make sure he is meeting his milestones. He doesn't like "tummy time" but we try to make him do it for a couple of minutes everyday. He has started smiling, reaching for objects and kicking. I tell him all the time he is getting ready to kick start his motorcycle. He loves to take a bath... He will lay there and kick and swing his arms. I have started letting him bathe with me in the big tub and he loves it. He could be in the middle of screaming crying and we get in the tub and he is a totally different child. He will start smiling and kicking. I keep telling him I will teach him how to swim in the tub when he gets a little older.
He is growing up so fast. He is starting to get his own personality. I just laugh to myself and think about my daddy always saying "the apple doesn't fall far from the tree." He is so like me its not even funny... We call him Junior all the time. He has started slinging his head back and straightening his legs when he gets mad. I can't help but laugh and know my time is coming. I want him to be a fighter... he has a long road ahead of him and he needs to have an attitude. Like I said in previous post - hearth cath is in January and then the Glenn procedure in Feb. I am not looking forward to it. I think it will be much harder on me this time. I can't imagine handing him over to the doctors and watching him lay there in NICU. They called yesterday 12-20-2010 to confirm his cath appt and to tell me it has been changed to Jan 6th. I felt like I was going to throw up before I could get off the phone. I have been struggling with all of my feelings for the past few days. I am so blessed everyday that I have Jordan but the unknown will kill you and make you be someone you've never been.
My niece and nephew came and stayed with me some this week...one at a time...LOL My nephew is 8 years old and he asked me yesterday "does it hurt your heart to know your baby is sick and has a broken heart" - as I held back the tears I told him "yes Joe, I hurt everyday for what Jordan will have to go through his whole life" - Joseph said "but God knows and he is with you and Jordan." Children are so innocent and sincere. Jordan has changed our lives in a way I never thought I would see. He has brought us closer to God and to the people that love us the most. He has also made us realize life is too short to live life to make others happy. It's the little things in life, not material things that matter the most. I am so thankful for every person that has touched our lives and reached out to us to give us comfort during this trying time in our lives.
We went for a follow up cardiologist appointment yesterday 12-22-2010. Jordan weighs 11 pounds and is 23 inches long....he is huge! They did an echo and didn't see any changes from the previous echo. We are so blessed and thankful for every second with this little guy. Can't wait to spend our first Christmas with him. Everyone have a Merry Christmas!
Friday, November 26, 2010
Tuesday, November 23, 2010
11-23-2010
So much to be thankful for... God has blessed us in so many ways this year. I never thought I would be the mother to such a precious little guy. I find myself just looking into his eyes thinking he is perfect! This is not the path I would have chosen but obviously God thought it was the journey he wanted us to travel. I have recently heard a song - No Matter What by Kerrie Roberts when I heard it for the first time I knew it was meant for me. Some of the lyrics are:
I find myself being so thankful for every second I have with Jordan but I still question Why? It just doesn't seem fair...everyday I live in fear of the unknown, wondering what our next doctors appointment will be like and the worst of them all is knowing we still have open heart surgeries ahead of us. I know God has blessed us so much in the last few months and I feel so guilty and selfish for questioning why my son has to be unhealthy. I blame myself everyday for his sufferings. Wondering if I had done one single thing different would he be healthy. It's so hard to look at him so perfect but know he is very sick. Those are the words you hate to hear come out of the doctors and nurses mouth. I know he is sick and he will NEVER be healed but I hate being reminded every week, every day, every second. Every time I look at his chest and know that he only has half a heart and how long will his heart last. I can't imagine my life without him. He is my everything!
I have found a new meaning to my life and my life as a mother. No one could have ever told me not to have Jordan- He is the little boy I have always wanted. I have asked God for him so many times, I even knew what his name would be when I was 12 years old. When I found out I was pregnant it was the best day of my life. Then when I found out he had a heart defect that would never be fixed it was the worst day of my life. I experienced so many emotions during my pregnancy. I can remember sitting at the table looking into Jordan's room and thinking "what if he doesn't get to come home." I am so lucky to have been able to bring him home and have a normal life for almost three weeks now. We are home as a family for the holidays. There are so many families we met this last stay at Children's Hospital that weren't as lucky as we were. My heart still breaks for them. I pray for them daily to continue to find comfort. God has been good and just like the song says I will trust you no matter what and I will find my strength in the Lord. That is so true! So many people ask "How do you face each day?" the only answer I have is lots of prayer and knowing God has a reason for everything and I have to keep believing.
This past week has been very hard. We have several doctor appointments weekly and home health care comes once a week. There is not much sleeping going on in these days. He has so many needs (medicines, breathing treatments, vital signs being checked) that sometimes it becomes overwhelming. But every night before I go to bed I thank God for one more day with him.
We have a cardiologist appointment tomorrow so once again my mind is going round and round. I have so much alone time with him that its hard not to let your mind play tricks on you. I am constantly looking at him to make sure he is breathing and that he isn't turning blue. I will post an update on doctors appointment after we get home. I want to say thanks so much to everyone that has prayed for our family. It is the prayers that get us through so many days that I didn't even want to get out of bed. Thanks for all the unconditional love and support. Times like this is when you see who the people are that love you for you and the ones that really matter in life.
I'm running back to Your promises one more time
Lord that's all I can hold on to
I gotta say this has taken me by surprise, but nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands
And even though I keep asking why
No matter what, I'm gonna love You
I know You can find a way to keep me from the pain
But if not, I'll trust You no matter what
When I'm stuck in this nothingness by myself
I'm just sitting in silence
There's no way I can make it without Your help, I won't even try it
I know You have Your reason for everything so I will keep believing
Whatever I might be feeling, God You are my hope
And You will be my strength
I find myself being so thankful for every second I have with Jordan but I still question Why? It just doesn't seem fair...everyday I live in fear of the unknown, wondering what our next doctors appointment will be like and the worst of them all is knowing we still have open heart surgeries ahead of us. I know God has blessed us so much in the last few months and I feel so guilty and selfish for questioning why my son has to be unhealthy. I blame myself everyday for his sufferings. Wondering if I had done one single thing different would he be healthy. It's so hard to look at him so perfect but know he is very sick. Those are the words you hate to hear come out of the doctors and nurses mouth. I know he is sick and he will NEVER be healed but I hate being reminded every week, every day, every second. Every time I look at his chest and know that he only has half a heart and how long will his heart last. I can't imagine my life without him. He is my everything!
I have found a new meaning to my life and my life as a mother. No one could have ever told me not to have Jordan- He is the little boy I have always wanted. I have asked God for him so many times, I even knew what his name would be when I was 12 years old. When I found out I was pregnant it was the best day of my life. Then when I found out he had a heart defect that would never be fixed it was the worst day of my life. I experienced so many emotions during my pregnancy. I can remember sitting at the table looking into Jordan's room and thinking "what if he doesn't get to come home." I am so lucky to have been able to bring him home and have a normal life for almost three weeks now. We are home as a family for the holidays. There are so many families we met this last stay at Children's Hospital that weren't as lucky as we were. My heart still breaks for them. I pray for them daily to continue to find comfort. God has been good and just like the song says I will trust you no matter what and I will find my strength in the Lord. That is so true! So many people ask "How do you face each day?" the only answer I have is lots of prayer and knowing God has a reason for everything and I have to keep believing.
This past week has been very hard. We have several doctor appointments weekly and home health care comes once a week. There is not much sleeping going on in these days. He has so many needs (medicines, breathing treatments, vital signs being checked) that sometimes it becomes overwhelming. But every night before I go to bed I thank God for one more day with him.
We have a cardiologist appointment tomorrow so once again my mind is going round and round. I have so much alone time with him that its hard not to let your mind play tricks on you. I am constantly looking at him to make sure he is breathing and that he isn't turning blue. I will post an update on doctors appointment after we get home. I want to say thanks so much to everyone that has prayed for our family. It is the prayers that get us through so many days that I didn't even want to get out of bed. Thanks for all the unconditional love and support. Times like this is when you see who the people are that love you for you and the ones that really matter in life.
Sunday, November 14, 2010
~ We Are Home...Again ~
As you all have probably figured out we are home...again! When we were in the hospital its easy to post on the blog everyday but being home is another story. We are staying VERY busy with doctors appointments and the everyday routine with a baby.
Last time we posted we were getting ready to go to the step down. Once we got to the step down on Friday (11-05-2010) everything went as planned. They told us if he had a good night that we could go home that next day. We were very shocked but so excited! We were a little nervous as to be expected but we were much more comfortable than we were last time. We took care of him that night and he did so good. We got very little sleep because someone was constantly coming in and out of the room. That morning around 6 am the doctor came in and said we were able to go home. You couldn't wipe the smiles off of our faces...Jordan was going home again! We started packing up and getting ready but as most of you know hospital time is very SLOWWWW! We didn't get to actually leave the hospital until four that afternoon. Then we had to go get his prescriptions filled and we were on our way home to Albany.
Once we got home we couldn't be more blessed to see all the surprises "someone" had left us. Thank you so much sweet Aunt Mallory! We are getting way to spoiled with all the good home cooked meals and desserts. That night he slept so good...he was excited to be back in his own bed. We had lots of company Sunday (10-07-2010) everyone said they wanted to come see us but we have figured out they really want to see the baby. Everyone walks in the door and says "Aww...he is so cute! Aww...we missed him so much" but no one ever says "we missed you too." He has changed our lives in so many wonderful ways and wouldn't change any of it.
Monday (10-08-2010) home health care nurse came by to see him. She gave us a good report - he has started back gaining some weight. All of his vitals signs were good and she was very proud of him. Tuesday we had a cardiologist appointment at 1:30pm. We have recently changed cardiologists to a doctor in Macon. When we were in the hospital we spoke with the surgeon about changing and he agreed. It only made sense considering we were driving to Atlanta the night before his appointments, getting a hotel room and then having to drive all the way back. Jordan can only tolerate the car seat for around two and a half hours after that he is out of control. That morning we packed up and finally got out of the door only 45 minutes after our goal time to leave. We have come to the realization we will never get anywhere on time ever again. We made it to the appointment with five minutes to spare. The doctor was great...He was very detailed with all the information he was giving us. Jordan was continuing to gain weight and all of his vital signs were good. They did another echo on him to see how thing were looking. The shunt looked good and the heart squeeze was wonderful. His only concern was the valve that was messed up during the heart cath. Dr. K had tried to repair it while he was in the heart this last time but its still not functioning properly. The cardiologist said we will continue to watch it and hope that it gets better. If it stays the same he thinks it can be treated with medicines. If it gets worse then we will have to have a valve replacement and that is not the road we want to go down. Then he would have two major heart defects and his heart would have to work harder. Meaning it would wear out quicker the older he gets. So for now we will continue to watch it and just pray for it to repair itself or get smaller with time.
The rest of the week was kind of boring. We had a pediatrician appointment Thursday and they all loved him. They were amazing...They understand Jordan's situation and how the common cold could be fatal to him. We were allowed to go in the back door and straight to a room. His doctor is wonderful. He had all good news at that appointment also. We are so proud of him and he just laid there like a little man while she checked him out. He spent several hours with his Dee on Friday. I had doctors appointments for myself and as much as I would love to show him off I left him at home. If you were to see him out in public you would never think anything was wrong with him. For some reason no matter where you are people see a baby and they are instantly drawn to touch them. Especially older people...I can't be rude and say "Don't touch my baby." So the way to avoid him being touched by strangers is leaving him at home. He would rather be at home being held by everyone anyway.
We had lots of company yesterday (11-13-2010). Everyone wants to see the little miracle child - he loves all the attention! He has started looking around and smiling. He has changed so much in the last few days. I find myself just watching him for hours. We have been so blessed! We got some of our Christmas decorations from the attic yesterday. Seems a little early but things take a lot longer now days. Maybe I will have it all put out before Christmas. Jordan loves to look at lights so I can't wait to see him stare at the tree.
Today we are planning on taking it easy and just enjoying the day. Time seems to fly when you're having so much fun! I wouldn't change any of it. We have lots of doctors appointments this week also. Hoping and praying for more good news. Thanks again for every ones love, support and prayers!
Last time we posted we were getting ready to go to the step down. Once we got to the step down on Friday (11-05-2010) everything went as planned. They told us if he had a good night that we could go home that next day. We were very shocked but so excited! We were a little nervous as to be expected but we were much more comfortable than we were last time. We took care of him that night and he did so good. We got very little sleep because someone was constantly coming in and out of the room. That morning around 6 am the doctor came in and said we were able to go home. You couldn't wipe the smiles off of our faces...Jordan was going home again! We started packing up and getting ready but as most of you know hospital time is very SLOWWWW! We didn't get to actually leave the hospital until four that afternoon. Then we had to go get his prescriptions filled and we were on our way home to Albany.
Once we got home we couldn't be more blessed to see all the surprises "someone" had left us. Thank you so much sweet Aunt Mallory! We are getting way to spoiled with all the good home cooked meals and desserts. That night he slept so good...he was excited to be back in his own bed. We had lots of company Sunday (10-07-2010) everyone said they wanted to come see us but we have figured out they really want to see the baby. Everyone walks in the door and says "Aww...he is so cute! Aww...we missed him so much" but no one ever says "we missed you too." He has changed our lives in so many wonderful ways and wouldn't change any of it.
Monday (10-08-2010) home health care nurse came by to see him. She gave us a good report - he has started back gaining some weight. All of his vitals signs were good and she was very proud of him. Tuesday we had a cardiologist appointment at 1:30pm. We have recently changed cardiologists to a doctor in Macon. When we were in the hospital we spoke with the surgeon about changing and he agreed. It only made sense considering we were driving to Atlanta the night before his appointments, getting a hotel room and then having to drive all the way back. Jordan can only tolerate the car seat for around two and a half hours after that he is out of control. That morning we packed up and finally got out of the door only 45 minutes after our goal time to leave. We have come to the realization we will never get anywhere on time ever again. We made it to the appointment with five minutes to spare. The doctor was great...He was very detailed with all the information he was giving us. Jordan was continuing to gain weight and all of his vital signs were good. They did another echo on him to see how thing were looking. The shunt looked good and the heart squeeze was wonderful. His only concern was the valve that was messed up during the heart cath. Dr. K had tried to repair it while he was in the heart this last time but its still not functioning properly. The cardiologist said we will continue to watch it and hope that it gets better. If it stays the same he thinks it can be treated with medicines. If it gets worse then we will have to have a valve replacement and that is not the road we want to go down. Then he would have two major heart defects and his heart would have to work harder. Meaning it would wear out quicker the older he gets. So for now we will continue to watch it and just pray for it to repair itself or get smaller with time.
The rest of the week was kind of boring. We had a pediatrician appointment Thursday and they all loved him. They were amazing...They understand Jordan's situation and how the common cold could be fatal to him. We were allowed to go in the back door and straight to a room. His doctor is wonderful. He had all good news at that appointment also. We are so proud of him and he just laid there like a little man while she checked him out. He spent several hours with his Dee on Friday. I had doctors appointments for myself and as much as I would love to show him off I left him at home. If you were to see him out in public you would never think anything was wrong with him. For some reason no matter where you are people see a baby and they are instantly drawn to touch them. Especially older people...I can't be rude and say "Don't touch my baby." So the way to avoid him being touched by strangers is leaving him at home. He would rather be at home being held by everyone anyway.
We had lots of company yesterday (11-13-2010). Everyone wants to see the little miracle child - he loves all the attention! He has started looking around and smiling. He has changed so much in the last few days. I find myself just watching him for hours. We have been so blessed! We got some of our Christmas decorations from the attic yesterday. Seems a little early but things take a lot longer now days. Maybe I will have it all put out before Christmas. Jordan loves to look at lights so I can't wait to see him stare at the tree.
Today we are planning on taking it easy and just enjoying the day. Time seems to fly when you're having so much fun! I wouldn't change any of it. We have lots of doctors appointments this week also. Hoping and praying for more good news. Thanks again for every ones love, support and prayers!
Friday, November 5, 2010
11-05-2010
WE ARE IN THE STEP DOWN ONCE AGAIN - one step closer to home! Jordan has done amazing since he got extubated Tuesday. We are so excited about his progress and ready to get him home so we can spoil him!
The last time I posted was Tuesday when he got extubated. I got to hold him several times that day but he mostly rested to recover from being extubated. Tuesday and Wednesday were both quiet days. Wednesday he slept most of the day. They removed some of his other tubes and started weaning him off the oxygen.
Thursday was a nightmare! When I got there to see him that morning he had a rubber band around his head. I was very confused...I asked the nurse why they had a rubber band around my son's head. He explained to me that Jordan needed a blood transfusion. In order for them to give him the transfusion he needed an IV. Jordan had kicked the one out of his foot that morning and they had taken his central line out earlier that morning. So they were trying to see if he had a vein in his head they could use to get an IV. They stuck him around ten times in his head and shaved both sides of his head. It was breaking my heart and I wanted to scream "that is enough." But I remained calm and tried to remind myself he needed the transfusion. After about 2 hours, 6 people later and 30 more sticks all over his body they decided they couldn't get a vein. It had gotten to the point I had to walk out and just cry outside by myself. I couldn't take watching them hurt my child over and over again. He had already been through so much and it wasn't fair for them to continue to hurt him. Once I got back they told me they weren't going to stick him anymore they would just put in another central line. I was much more accepting of that solution than them continuing to stick him. But the worse part of the day is once the surgeon came by he said Jordan didn't need a transfusion. I was very upset! I couldn't believe they had put him through so much pain for something that wasn't necessary. We talked with several doctors and explained to them my concern and how upset I was for the way things happened throughout the day. The doctors understood our concerns and helped make things somewhat better. I couldn't make myself leave him that night. I needed to comfort him and make sure he knew mama would make things better. Other than him looking like a pin cushion he had a very good day. He had pulled his feeding tube out that morning and took the bottle like a champ. He didn't need the oxygen so they removed it also. It was such a good feeling to finally look at him with no tubes on his face. He would just open his eyes and stare at me. I constantly question myself if he is thinking "I love my mama so much" or "why in the world are you putting me through all of this mama." It breaks my heart to see him go through more pain than I have ever endured and probably ever will go through. But I couldn't imagine my life without him. He is an amazing little guy.
This morning when I got to see him he was all clean and smelled like "pink" lotion (mama's favorite). He was in a big boy crib and just looking around. He looked like himself - They told us they were waiting on a room and he was ready to go to the floor. We were hoping that was the news we would hear but we didn't want to get our hopes up. We are so excited that we would be able to stay with him overnight and take care of him. He is such an amazing little guy!
Thanks everyone for the prayers and support! Our God is an awesome God - We've seen so many miracles in the last month.
The last time I posted was Tuesday when he got extubated. I got to hold him several times that day but he mostly rested to recover from being extubated. Tuesday and Wednesday were both quiet days. Wednesday he slept most of the day. They removed some of his other tubes and started weaning him off the oxygen.
Thursday was a nightmare! When I got there to see him that morning he had a rubber band around his head. I was very confused...I asked the nurse why they had a rubber band around my son's head. He explained to me that Jordan needed a blood transfusion. In order for them to give him the transfusion he needed an IV. Jordan had kicked the one out of his foot that morning and they had taken his central line out earlier that morning. So they were trying to see if he had a vein in his head they could use to get an IV. They stuck him around ten times in his head and shaved both sides of his head. It was breaking my heart and I wanted to scream "that is enough." But I remained calm and tried to remind myself he needed the transfusion. After about 2 hours, 6 people later and 30 more sticks all over his body they decided they couldn't get a vein. It had gotten to the point I had to walk out and just cry outside by myself. I couldn't take watching them hurt my child over and over again. He had already been through so much and it wasn't fair for them to continue to hurt him. Once I got back they told me they weren't going to stick him anymore they would just put in another central line. I was much more accepting of that solution than them continuing to stick him. But the worse part of the day is once the surgeon came by he said Jordan didn't need a transfusion. I was very upset! I couldn't believe they had put him through so much pain for something that wasn't necessary. We talked with several doctors and explained to them my concern and how upset I was for the way things happened throughout the day. The doctors understood our concerns and helped make things somewhat better. I couldn't make myself leave him that night. I needed to comfort him and make sure he knew mama would make things better. Other than him looking like a pin cushion he had a very good day. He had pulled his feeding tube out that morning and took the bottle like a champ. He didn't need the oxygen so they removed it also. It was such a good feeling to finally look at him with no tubes on his face. He would just open his eyes and stare at me. I constantly question myself if he is thinking "I love my mama so much" or "why in the world are you putting me through all of this mama." It breaks my heart to see him go through more pain than I have ever endured and probably ever will go through. But I couldn't imagine my life without him. He is an amazing little guy.
This morning when I got to see him he was all clean and smelled like "pink" lotion (mama's favorite). He was in a big boy crib and just looking around. He looked like himself - They told us they were waiting on a room and he was ready to go to the floor. We were hoping that was the news we would hear but we didn't want to get our hopes up. We are so excited that we would be able to stay with him overnight and take care of him. He is such an amazing little guy!
Thanks everyone for the prayers and support! Our God is an awesome God - We've seen so many miracles in the last month.
Tuesday, November 2, 2010
11-02-2010
Jordan is finally extubated! He is a happy little guy! I called this morning to check on him and they said all of his gases were good. I was hoping and praying for him to get extubated and I would finally get to hold him. When I got to see him this morning the first thing I asked was "Can I hold him?" The nurse said "No, his lactic acid are elevated." Lactic acid is how the body breaks down the carbs and uses it for energy. I was so disappointed that I couldn't hold him. She looked at me and asked was I about to cry. I felt the tears swelling up in my eyes...I was trying to hold them back. I needed to hold my little guy and knew he needed to be comforted. He doesn't deserve to go through all of this.
They started feeding him bolus feds through his NG tube around 8 pm and he tolerated them well. He woke up yesterday around eleven and stayed awake all day! He was so excited to see his mama. When we left around midnight he was still awake. The nurse was going to give him something to make him sleepy. He has been taking baby steps forward and we are very excited about every step closer to home.
They started feeding him bolus feds through his NG tube around 8 pm and he tolerated them well. He woke up yesterday around eleven and stayed awake all day! He was so excited to see his mama. When we left around midnight he was still awake. The nurse was going to give him something to make him sleepy. He has been taking baby steps forward and we are very excited about every step closer to home.
Monday, November 1, 2010
~ HAPPY ONE MONTH OLD BIRTHDAY JORDAN ~
We are still not extubated...I called this morning at 6 am and they said he had passed his CPAP trials. I was hoping and praying I would get to hold him on his month old birthday! My arms are aching to hold my little boy. It just doesn't seem fair to him or to his mama. LOL We aren't allowed to see him in the morning until after shift change but of course they had new admits and I couldn't see him until later. I was so disappointed when I walked in and he was still on the vent. The doctor came and talked with me and said he had no real reason on why he didn't want to extubate other than his color. He said he looked pale and he just wanted to give him more time to rest. I can respect his decision because I want Jordan to do good this time.
I hope when I update tomorrow it will be good news! I can't wait to hold him...Please continue to pray for Jordan to be a fighter!
I hope when I update tomorrow it will be good news! I can't wait to hold him...Please continue to pray for Jordan to be a fighter!
Sunday, October 31, 2010
10-31-10 ~ HAPPY HALLOWEEN
Jordan's First Halloween
Jordan in his Halloween outfit last Sunday when we were coming to Atlanta for his Cardiology appointment. Pa (my grandfather) texted me and said "Jordan didn't like being dressed in these outfits and that he needed to come live with them." If we could have stayed at home a little longer he would have been dressed in his Halloween outfits all week. Guess us being admitted into the hospital is Jordan's way of saying he doesn't like wearing girly outfits. I promise if he doesn't like them that much I will never make him wear them again.
Jordan is having an OK day. They tried his CPAP trials during the night and he passed one and failed one. They said his gases were not good on the second one and they would keep trying throughout the day. It was very disappointing to hear that he wouldn't be extubated today. It's just heartbreaking to see him get so aggravated with the tube being in his throat. He wakes up and instantly starts gagging and failing his arms all in the air. They are having to keep him sedated with versed or pain medicine so he will tolerate the tube. Yesterday we had to put socks on his hands to keep him from pulling out the tube. He has such a bad attitude! Everyone keeps wanting to know where he gets it from...I don't know where the attitude comes from! LOL All of the nurses and doctors keep telling us that his attitude is a good thing. That tells them that he is a fighter!
They have already done one CPAP trial today around noon and he failed. They keep telling me its normal. But I don't want to be normal! I want it to be like our first time being admitted to the hospital where he was the ROCKSTAR! I guess this is God's way of teaching me patience. One of the nurses came by and talked with me earlier to reassured me that he is still on the right path. That we are moving forward and to try not to get aggravated. I guess we were spoiled from the first surgery. They aren't going to make any sudden changes today and keep doing CPAP trials. They did see on his xrays that he has a small pneumothorax (a collection of air in the chest cavity). They will continue to monitor it and hope that it goes down on its own. They say its common when they have chest tubes.
Please continue to pray of him and us. Today has been one of those days for me. It's just depressing being at the hospital day in and day out. It's so sad to see all of these children with such critical illnesses. I just don't think its fair and I wish I could take it all way from them. I guess I never realized how many kids were affected by illnesses until now. I have met some wonderful people already and our journey has just begun. We've met several families this week that have newborns with HLHS. We have all started talking and finding comfort in one another. It's so hard to walk down this unknown path but it helps when you have others that know exactly how you feel. I would like to ask everyone to please pray for these families!
Saturday, October 30, 2010
10-30-2010
Today seems to be a better day. He is still intubated and just resting peacefully. They aren't going to make any changes to him today. They may do some CPAP trials tonight but they won't extubate until maybe tomorrow. We don't have much of an update today.
Please just keep praying! We feel the power of prayer all around us!
Please just keep praying! We feel the power of prayer all around us!
Friday, October 29, 2010
10-29-2010
Jordan is doing better today. He is still intubated and resting peacefully. They are not going to make any sudden changes because they want him to recover from the stress of yesterday. He looks so much better now that he isn't struggling to breathe. Even thou this wasn't what was supposed to happen maybe it will make him stronger. They still don't know what happened or what is going on with him now. They keep saying its respirtory because the shunt looks good. I honestly believe that he was extubated to soon. Normally they have to have 3 CPAP trials (where they breathe on their own with the vent still in place) but they only gave him 1 CPAP trial and he barely passed it. Instead of doing another one they went ahead and extubated him. So I will always question if that is the reason why he bombed out.
Thursday, October 28, 2010
~ PRAYERS ARE NEEDED ~
Sorry I haven't been able to update the blog lately. Things have been kinda crazy and by the time we get to Ronald McDonald house we are exhausted. We are hanging in there and trying to stay positive.
Yesterday 10-27-2010 - Jordan was the ROCKSTAR of the CICU... All of the nurses and doctors were shocked at his improvement. They extubated him around 5:30am and removed some of his heart lines. Around 11 am they removed the sheath that was in his groin and started weaning him off some of his medicines. At 2pm I was able to feed him with a bottle and he drank it like a little pig. He did so good for a couple of hours then his breathing became labored. I kept telling the nurse something is not right. I held and cuddled him the way I did at home and it still didn't help. He was fussy and didn't act like himself. They make us leave around 6:45pm for shift change so we left to go get some clothes. As prepared as I always am...we were not prepared for this. We had the clothes on our body and the clothes we wore Sunday so we were not prepared at all! Once we were able to get to see him that evening he still didn't act like himself. When I fed him his 12am bottle he didn't want it so they had to put his feeding tube back in. We stayed with him until 1am and I knew something wasn't right.
10-28-2010
When I called this morning to check on him at 6am the nurse said he was "OK." He hadn't had a good night and his sat's were still all over the place. His normal sat level should be between 85 and 75 but Jordan's is now 75 and below. When we got to see him this morning he didn't look like himself. The nurse talked with us and told us he wasn't doing as good as they had hoped. Yesterday they had told us we would go to the step down today and be home by the weekend. They had changed his medicines in hopes that it would help him breath a little better. They had increased his oxygen to 8 liters of high flow and his sat levels were still dropping. We sat there and watched them dip into the 40s and then go back up. The doctors were ordering blood gases and xrays but all of his gases were good. The xray looked better than the morning xray. They had told us his lungs were "wet" and they had fluid in them. They had given him meds to take some of the fluid off of his lungs. His sat levels were still dropping and they have decided to intubate him again. They say he maybe tired and it's just to hard for him to breath on his own.
This has got to be the hardest thing I have ever faced. I finally see my dreams coming true that I get the little boy that I have always wanted. Then I find out he has a heart defect that can never be fixed. He has his first open heart surgery and does awesome. We get to take him home for a week and see your dreams coming true again. We did everything we knew to do to make sure his life is comfortable and then the bomb drops once again. The unexpected happens...another open heart surgery! Then they tell you he is doing great and the bottom drops out again. What do you do? Is it fair to him? You question yourself over and over! I know God has a purpose for him and for us but I don't want him to suffer! Jordan is precious and did nothing to deserve this. I would prefer this happen to me not him. He needs every ones prayers and we need your prayers too. I feel my heart sinking slowly and I am trying so hard to be strong. It's so hard because we've had him home and were able to protect him from all the surgeries and needles.
Thanks everyone for all the prayers, text, and phone calls!
Yesterday 10-27-2010 - Jordan was the ROCKSTAR of the CICU... All of the nurses and doctors were shocked at his improvement. They extubated him around 5:30am and removed some of his heart lines. Around 11 am they removed the sheath that was in his groin and started weaning him off some of his medicines. At 2pm I was able to feed him with a bottle and he drank it like a little pig. He did so good for a couple of hours then his breathing became labored. I kept telling the nurse something is not right. I held and cuddled him the way I did at home and it still didn't help. He was fussy and didn't act like himself. They make us leave around 6:45pm for shift change so we left to go get some clothes. As prepared as I always am...we were not prepared for this. We had the clothes on our body and the clothes we wore Sunday so we were not prepared at all! Once we were able to get to see him that evening he still didn't act like himself. When I fed him his 12am bottle he didn't want it so they had to put his feeding tube back in. We stayed with him until 1am and I knew something wasn't right.
10-28-2010
When I called this morning to check on him at 6am the nurse said he was "OK." He hadn't had a good night and his sat's were still all over the place. His normal sat level should be between 85 and 75 but Jordan's is now 75 and below. When we got to see him this morning he didn't look like himself. The nurse talked with us and told us he wasn't doing as good as they had hoped. Yesterday they had told us we would go to the step down today and be home by the weekend. They had changed his medicines in hopes that it would help him breath a little better. They had increased his oxygen to 8 liters of high flow and his sat levels were still dropping. We sat there and watched them dip into the 40s and then go back up. The doctors were ordering blood gases and xrays but all of his gases were good. The xray looked better than the morning xray. They had told us his lungs were "wet" and they had fluid in them. They had given him meds to take some of the fluid off of his lungs. His sat levels were still dropping and they have decided to intubate him again. They say he maybe tired and it's just to hard for him to breath on his own.
This has got to be the hardest thing I have ever faced. I finally see my dreams coming true that I get the little boy that I have always wanted. Then I find out he has a heart defect that can never be fixed. He has his first open heart surgery and does awesome. We get to take him home for a week and see your dreams coming true again. We did everything we knew to do to make sure his life is comfortable and then the bomb drops once again. The unexpected happens...another open heart surgery! Then they tell you he is doing great and the bottom drops out again. What do you do? Is it fair to him? You question yourself over and over! I know God has a purpose for him and for us but I don't want him to suffer! Jordan is precious and did nothing to deserve this. I would prefer this happen to me not him. He needs every ones prayers and we need your prayers too. I feel my heart sinking slowly and I am trying so hard to be strong. It's so hard because we've had him home and were able to protect him from all the surgeries and needles.
Thanks everyone for all the prayers, text, and phone calls!
Tuesday, October 26, 2010
Out of Surgery
Jordan is out of surgery! They took him back around 7am and Dr. Kirshbom came to talk to us around 2pm. The surgery didn't go as we had hoped - Dr. K said that it was really too soon to open his chest up again. The scar tissue made things a "little sticky" and complicated the surgery. They had to open up his groin just in case they were unable to open the chest. Once they got stent out the valve was tangled and he had to do some additional repairs. He trimmed out the muscle around the shunt in hope to open the area. Dr. K hopes that the repairs will work for the next 2-3 months until we can do the next surgery.
Second Surgery - 10-26-10
We came up Sunday night so Jordan wouldn't be worn out for his first follow up appointment with the cardiologist. We rushed around to get there on time without even eating breakfast. It is amazing how long it takes to do everything with a newborn added to the mix. When the nurse at Dr V's checked his oxygen sat's they were really low. We thought it was just his wiggling since we have had lots of trouble monitoring it ourselves.
Backtrack........At home last week we had a home healthcare nurse come and she didn't have anything to measure his sats and then friday at the pediatrician they didn't have anything either. They did write us a prescription to get a pulse oximeter for home so we could monitor him ourselves. The handheld one they gave us worked friday but would not work saturday. We went to the hospital to check him and then ended up going back and getting a hospital grade machine from the home healthcare company. We felt at ease because his sats were looking good.
Dr V's crew hooked up 4 machines to Jordan, including ours and all of them showed low sats but ours. Somehow it was not measuring properly. We had tried so hard to do everything we could to take care of him. They sent us to the ER and we could not get the nurses to see the urgency of the situation, at first. When we got back to a room they checked his sats and she said "follow me and we ran to another room in the back". They hooked him up to another machine and immediately doctors were everywhere. Someone grabbed Jordan and ran into a trauma room. They started hooking him up to machines and trying to get an IV started. Jordan was screaming and all we could do was stand there and cry. It looked like a bomb had gone off in the room - there were syringes, needles and machines everywhere. Several of Jordan's doctors from his previous stay were in the room asking what is going on. Everyone kept saying did ya'll think he was blue, has he been throwing up, when was the last time he ate. All we could say was his color was great, he had been eating like a pig. He pulled his NG tube out last Wednesday and started sucking the bottle like a professional. They couldn't get an IV so they immediately took us to CICU. Once we got there a nurse took us to another room. Once they got him stable, she came in and said "I am sorry for rushing ya'll out but I knew we had to get busy." She told us they had to shave two parts of his head to try for a successful IV. They didn't have any luck with any of his arms, legs or head. They ended up getting one in his neck. We finally got to see him and it was terrible to see him laying there so lifeless. We hadn't been with him 20 minutes when the nurse said "Dr. Cantro his sats are dropping...we watched them go from 70, 60, 50, 40 and 30's...they were pumping him with volume and once again we were rushed to another room. The nurse came in and said they were intubating him. It was the best way for them to get him stablized for his heart cath. Once they took him to the cath lab the stent placement was unsuccessful. They got the stent in and it shifted backwards. They left it in with the wire attached so it wouldn't float off into the heart. They had talked about taking him to surgery right then but he was stable so it would be best to wait until the morning. After talking with Dr. V and Dr. Kirshbom they kept telling us we weren't to blame for what happened. When they did the first open heart surgery they put in a shunt to help the lungs get blood flow from right side of the heart. The muscle around the shunt had started constricting the shunt and he wasn't getting enough oxygenated blood to his lungs. They said its very rare for this to happen with the sano shunt but they were going to do everything possible to fix the problem. They kept him paralyzed all night, knocked out and pain free.
We got here at 6am to see him before they took him off to surgery a little after 7. Please keep all of the prayers coming. A second open heart surgery is a lot of stress on a 26 day old baby. He has been taking his bottle like we are starving him and has gained over a pound at home last week. We can't wait to get through this huge bump in the road and get our beautiful little man back home again. PRAY PRAY PRAY and PRAY some more!!
Backtrack........At home last week we had a home healthcare nurse come and she didn't have anything to measure his sats and then friday at the pediatrician they didn't have anything either. They did write us a prescription to get a pulse oximeter for home so we could monitor him ourselves. The handheld one they gave us worked friday but would not work saturday. We went to the hospital to check him and then ended up going back and getting a hospital grade machine from the home healthcare company. We felt at ease because his sats were looking good.
Dr V's crew hooked up 4 machines to Jordan, including ours and all of them showed low sats but ours. Somehow it was not measuring properly. We had tried so hard to do everything we could to take care of him. They sent us to the ER and we could not get the nurses to see the urgency of the situation, at first. When we got back to a room they checked his sats and she said "follow me and we ran to another room in the back". They hooked him up to another machine and immediately doctors were everywhere. Someone grabbed Jordan and ran into a trauma room. They started hooking him up to machines and trying to get an IV started. Jordan was screaming and all we could do was stand there and cry. It looked like a bomb had gone off in the room - there were syringes, needles and machines everywhere. Several of Jordan's doctors from his previous stay were in the room asking what is going on. Everyone kept saying did ya'll think he was blue, has he been throwing up, when was the last time he ate. All we could say was his color was great, he had been eating like a pig. He pulled his NG tube out last Wednesday and started sucking the bottle like a professional. They couldn't get an IV so they immediately took us to CICU. Once we got there a nurse took us to another room. Once they got him stable, she came in and said "I am sorry for rushing ya'll out but I knew we had to get busy." She told us they had to shave two parts of his head to try for a successful IV. They didn't have any luck with any of his arms, legs or head. They ended up getting one in his neck. We finally got to see him and it was terrible to see him laying there so lifeless. We hadn't been with him 20 minutes when the nurse said "Dr. Cantro his sats are dropping...we watched them go from 70, 60, 50, 40 and 30's...they were pumping him with volume and once again we were rushed to another room. The nurse came in and said they were intubating him. It was the best way for them to get him stablized for his heart cath. Once they took him to the cath lab the stent placement was unsuccessful. They got the stent in and it shifted backwards. They left it in with the wire attached so it wouldn't float off into the heart. They had talked about taking him to surgery right then but he was stable so it would be best to wait until the morning. After talking with Dr. V and Dr. Kirshbom they kept telling us we weren't to blame for what happened. When they did the first open heart surgery they put in a shunt to help the lungs get blood flow from right side of the heart. The muscle around the shunt had started constricting the shunt and he wasn't getting enough oxygenated blood to his lungs. They said its very rare for this to happen with the sano shunt but they were going to do everything possible to fix the problem. They kept him paralyzed all night, knocked out and pain free.
We got here at 6am to see him before they took him off to surgery a little after 7. Please keep all of the prayers coming. A second open heart surgery is a lot of stress on a 26 day old baby. He has been taking his bottle like we are starving him and has gained over a pound at home last week. We can't wait to get through this huge bump in the road and get our beautiful little man back home again. PRAY PRAY PRAY and PRAY some more!!
Wednesday, October 20, 2010
~ WE ARE HOME ~
Thanks everyone for the prayers! They worked and God has shown us so many miracles. He is such a fighter. We went to the step down unit on Thursday Oct 14 around 3 pm, only 8 days after his first major open heart surgery. All of the nurses and doctors would come in and say "he is doing so good and that he has followed all of the rules".
With no sleep at all on Thursday they started coming in our room around 8 am on Friday with more information. At this point we were over loaded and had not set foot out of the hospital in days. My head was killing me but God gave us the strength to keep going. They had talked with us about doing an MRI for a research study and we would get results so I told them we would agree to do it. Since I work in MRI I knew there was no harm so why not. If it would benefit others and us sure we will do it. Little did I know it would break my heart to see my 2 week old child being wheeled away for another procedure. He did great and didn't need any medicine to hold still. We also got good news from the exam. We had to attend more classes and talk with more doctors on Friday in between feeding and seeing about Jordan. The poor fellow didn't get a break at all - they were coming in at all hours of the day and night checking his vital signs and taking blood. I felt so sorry for him. I just wanted to take him away from all of the pain.
Saturday morning things started out kind of slow. Dr Kirshbom's assistant came in and said "well we've done all we could do and he is doing great so we are sending y'all home". You should have seen the look on our faces - our mouths dropped! She said "y'all know what to do if you need us and don't hesitate to call us for any reason". Yes, don't get me wrong we were ready to come home but we've only been taking care of him for a day and a half and he had monitors on him at every second. Now they want us to take him home and know how to do everything. Another doctor came in and wanted to know if we had any questions. We both said "no" but he thought it would be a good idea to tell us that even if we did everything perfect things could still go wrong. I just looked at him and thought your kidding me. Your sending us home and the last thing you say is even if you do everything perfeclty for him, things could still go wrong. That is just something you really don't want to think about. He has a feeding tube so he is on a feeding pump every 3 hours around the clock and it takes an hour to feed him. He has medicines he has to take around the clock every three hours. They gave us more instructions on feeding and giving him his medicines and out the door we went. We put him in his car seat and he started crying. After trying to settle him down for 10 minutes I looked at the nurse and said "what do I do" she said "you'll figure it out". As we are walking out the door the nurse said "do you feel like your taking home a time bomb"? Not exactly something you want to hear as your walking out the door. I was a nervous wreck and I question myself over and over - did I know how to take care of this fragile little guy? We finally got home around 9 pm and the fun began! Not only is is it difficult to bring home a healthy newborn but one that is very sick.... that's a whole new way of life.
We made it through one night at home! Sunday some of the family came over and he was the best baby all day! He never once got mad and he would wake up for a little while then go back to sleep. But around 12 am another child came to life. Screaming crying and NOTHING I did would help him. Finally hours later he settled down and we were able to sleep for about an hour. Then it was time to feed him and give medicine. By now we are walking zombies! I am not sure if I will be able to make it for another hour. But somehow we made it through the day and once again he is an angel during the day. We would have loved to sleep while he was sleeping but the house looked like a tornado had come through it once we unpacked the car. For all of you that know me and my OCD problem - I have had kicked into overdrive. I couldn't take the mess much longer. Thankfully between Mama on Sunday and Rhonda on Monday I was able to at least get the majority of it put up.
We had our first follow up appointment in Atlanta on Tuesday. That was very interesting - packing the car for us and for him. Let's see we had the diaper bag, a cooler with milk, a bag with his feeding pump and supplies and another bag just in case we had to stay overnight. So it looked like we were moving out once again. We had planned on leaving around 9 am and we finally got on the road around 10:30am. Our appointment was at 2 pm but we were told to get there around 1 pm. We didn't make it on time but we tried! His appointment went well. Dr. Kirshbom said his incision looked great and he had gained a couple of ounces. We were excited about him gaining because he had lost almost a pound. Then we had to meet with another doctor about his shunt. I know they try to help us be prepared but I am so over being told that "he will never be cured and that his days are limited". If we've been told that one time we've been told 100 times. I know it's their job but this is our son that has done amazing and God is with him every step of his journey. We are going to love him and take care of him to the best of our ability. Don't get me wrong its very scary to know the reality of the situation but we can't sit and think about the negatives. He needs us to be positive for him and I have no doubt that he continue to be strong everyday.
We have a long journey ahead of us but with God, supportive family and friends and many prayers I know we will get through it. We have doctors appointments in Atlanta every week for several weeks and appointments every week at home. Home healthcare comes to the house once a week for 18 weeks to check his vital signs and weight. We are trying to find a normal life as possible for him. It's so hard when every time you turn around someone is poking and messing with him. Everyone please continue to pray for him. I will continue to post on the blog when we have updates. My computer time seems to be a lot more limited these day! Thanks for all the support!
With no sleep at all on Thursday they started coming in our room around 8 am on Friday with more information. At this point we were over loaded and had not set foot out of the hospital in days. My head was killing me but God gave us the strength to keep going. They had talked with us about doing an MRI for a research study and we would get results so I told them we would agree to do it. Since I work in MRI I knew there was no harm so why not. If it would benefit others and us sure we will do it. Little did I know it would break my heart to see my 2 week old child being wheeled away for another procedure. He did great and didn't need any medicine to hold still. We also got good news from the exam. We had to attend more classes and talk with more doctors on Friday in between feeding and seeing about Jordan. The poor fellow didn't get a break at all - they were coming in at all hours of the day and night checking his vital signs and taking blood. I felt so sorry for him. I just wanted to take him away from all of the pain.
Saturday morning things started out kind of slow. Dr Kirshbom's assistant came in and said "well we've done all we could do and he is doing great so we are sending y'all home". You should have seen the look on our faces - our mouths dropped! She said "y'all know what to do if you need us and don't hesitate to call us for any reason". Yes, don't get me wrong we were ready to come home but we've only been taking care of him for a day and a half and he had monitors on him at every second. Now they want us to take him home and know how to do everything. Another doctor came in and wanted to know if we had any questions. We both said "no" but he thought it would be a good idea to tell us that even if we did everything perfect things could still go wrong. I just looked at him and thought your kidding me. Your sending us home and the last thing you say is even if you do everything perfeclty for him, things could still go wrong. That is just something you really don't want to think about. He has a feeding tube so he is on a feeding pump every 3 hours around the clock and it takes an hour to feed him. He has medicines he has to take around the clock every three hours. They gave us more instructions on feeding and giving him his medicines and out the door we went. We put him in his car seat and he started crying. After trying to settle him down for 10 minutes I looked at the nurse and said "what do I do" she said "you'll figure it out". As we are walking out the door the nurse said "do you feel like your taking home a time bomb"? Not exactly something you want to hear as your walking out the door. I was a nervous wreck and I question myself over and over - did I know how to take care of this fragile little guy? We finally got home around 9 pm and the fun began! Not only is is it difficult to bring home a healthy newborn but one that is very sick.... that's a whole new way of life.
We made it through one night at home! Sunday some of the family came over and he was the best baby all day! He never once got mad and he would wake up for a little while then go back to sleep. But around 12 am another child came to life. Screaming crying and NOTHING I did would help him. Finally hours later he settled down and we were able to sleep for about an hour. Then it was time to feed him and give medicine. By now we are walking zombies! I am not sure if I will be able to make it for another hour. But somehow we made it through the day and once again he is an angel during the day. We would have loved to sleep while he was sleeping but the house looked like a tornado had come through it once we unpacked the car. For all of you that know me and my OCD problem - I have had kicked into overdrive. I couldn't take the mess much longer. Thankfully between Mama on Sunday and Rhonda on Monday I was able to at least get the majority of it put up.
We had our first follow up appointment in Atlanta on Tuesday. That was very interesting - packing the car for us and for him. Let's see we had the diaper bag, a cooler with milk, a bag with his feeding pump and supplies and another bag just in case we had to stay overnight. So it looked like we were moving out once again. We had planned on leaving around 9 am and we finally got on the road around 10:30am. Our appointment was at 2 pm but we were told to get there around 1 pm. We didn't make it on time but we tried! His appointment went well. Dr. Kirshbom said his incision looked great and he had gained a couple of ounces. We were excited about him gaining because he had lost almost a pound. Then we had to meet with another doctor about his shunt. I know they try to help us be prepared but I am so over being told that "he will never be cured and that his days are limited". If we've been told that one time we've been told 100 times. I know it's their job but this is our son that has done amazing and God is with him every step of his journey. We are going to love him and take care of him to the best of our ability. Don't get me wrong its very scary to know the reality of the situation but we can't sit and think about the negatives. He needs us to be positive for him and I have no doubt that he continue to be strong everyday.
We have a long journey ahead of us but with God, supportive family and friends and many prayers I know we will get through it. We have doctors appointments in Atlanta every week for several weeks and appointments every week at home. Home healthcare comes to the house once a week for 18 weeks to check his vital signs and weight. We are trying to find a normal life as possible for him. It's so hard when every time you turn around someone is poking and messing with him. Everyone please continue to pray for him. I will continue to post on the blog when we have updates. My computer time seems to be a lot more limited these day! Thanks for all the support!
Friday, October 15, 2010
10-15-2010
This little guy needs his own instruction book...whew...our brains are overloaded. Before I go into all the details we are out of CICU and in the step down unit. We are able to stay with him 24/7 and take care of him while they monitor us and his vital signs. It hasn't been bad at all he is a very good baby. None of us can get any sleep when they are in and out of the room every 30 minutes. I can't wait to get him home so he doesn't have to have someone waking him up all night long. He has been a champ! It breaks my heart every time they come in to get blood and give shots. He is going to be scared to death of a hospital and doctors.
We've had 2 hours of sleep and 14 different classes...shunt class, CPR class, discharge class, car seat safety class, etc. It's unbelievable! I have a whole bag of information we are suppose to remember. We have medicines we are giving around the clock. We are feeding for an hour every three hours so I have NO idea how I am suppose to ever sleep again. He has a feeding tube and will have it for a little while. We have to give him the bottle for 20 minutes and then put the rest through the pump. Once we get discharged we've got an appointment every week in Atlanta for 6 weeks, not counting his appointments in Albany. I need a nurse nanny - QUICK! Oh and home health will come to the house every week for 18 weeks. So needless to say our lives will never be the same! But we wouldn't have it any other way! He is precious and we will get the hang of everything and it will be our life.
We've had 2 hours of sleep and 14 different classes...shunt class, CPR class, discharge class, car seat safety class, etc. It's unbelievable! I have a whole bag of information we are suppose to remember. We have medicines we are giving around the clock. We are feeding for an hour every three hours so I have NO idea how I am suppose to ever sleep again. He has a feeding tube and will have it for a little while. We have to give him the bottle for 20 minutes and then put the rest through the pump. Once we get discharged we've got an appointment every week in Atlanta for 6 weeks, not counting his appointments in Albany. I need a nurse nanny - QUICK! Oh and home health will come to the house every week for 18 weeks. So needless to say our lives will never be the same! But we wouldn't have it any other way! He is precious and we will get the hang of everything and it will be our life.
We are so excited about the prospect of going home. We have had a small taste of family life with just the two of us taking care of our little man since last night. It has been really nice.
We were reminded this morning by the Hospital Cardiologist that our son's condition is still critical. We need to be aware of any changes in his skin color and breathing patterns. He is much more succeptible to infection than a non CHD baby. We have to monotor his fluid intake and outflow because dehydration is a serious issue for him. Just looking at him he looks beautiful and perfect to us. There are no signs of his broken heart.
Please continue to pray for all of us... Our journey has just begun and it will be long and hard but he is worth every minute of it. God has given him to us for a reason. He has touched so many lives and will continue to bless more. Thanks everyone for the love an support.
Wednesday, October 13, 2010
10-13-2010
GOD IS GOOD! We are so proud of this little man. He is such a miracle child. Today was another BIG day for him. He got his heart lines removed and his chest tube. He does not have lines or IV's other than one peripheral IV site that is not being used. He does have a feeding tube for now. He wasn't interested in taking a bottle today because he is on continuous feeds through his feeding tube so he was not hungry. Once they start him on bolus feedings, we are going to try to start feeding him from the bottle again. So his next big step is eating. With heart babies its hard for them to suck and breath at the same time. We will keep praying for him to eat well and continue gaining his strength. The nurse told us earlier we would be going to the step down unit tomorrow. We are so excited! This means we can stay with him 24/7 and we will be the ones taking care of him. They will teach us things to look for once we get home since he will still be sick. He will be very fragile until he has his next surgery. Please continue to pray for him and us! Thanks everyone for ALL the support!
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