Jordan's First St Patricks Day 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, March 28, 2011
Much Needed Update
Thursday, March 24, 2011
Sunday, February 13, 2011
Feb 13, 2011
Last Thursday - We went to Cuthbert(my Home town) and met with the Mayor and he signed a proclamation for the City of Cuthbert to recognize CHD Awareness week.
Monday- I met with Mayor of Albany - Dr Willie Adams and he signed the proclamation for the City of Albany to recognize CHD Awareness week.
Tuesday- Jordan was the star and was on WALB our local TV station. He really did well and I was so proud of him for being so sweet.
Wednesday- We went for a quick visit to see Jordan's new friend Olivia. Olivia needed to borrow Jordan's swaddle blanket so her mama and daddy could get a few hours of rest.
Thursday- We were so excited a day alone and we were staying in our PJs all day! NOT! Something just told me to check his oxygen saturation levels and they were 77-79. I remained calm but immediately called the cardiologist, they wanted his pediatrician to see him ASAP. So that meant I had to get dressed. Granny Lucy and Grandaddy Ron watched Jordan while I rushed and got dressed quickly, took him to the Dr to find out he has another ear infection and a viral infection. The doctor never really explained to me what his viral infection was, he just gave us antibiotics. I called the cardiologist after the appt to make sure it was OK for us to give Jordan the medicines he had prescribed. Then they tell me "If he doesn't get better and he started changing for the worse, take him to the ER." So trying to remain calm we monitored his oxygen levels for hours and both slept with one eye open all night.
Friday- He seemed to be doing much better. His sats are hanging around 79-80 so I can live with that number. I really feel like he is cutting teeth - EVERYTHING goes in his mouth and he drooling. He keeps his hands in his mouth all hte time.
We have a cardiologist appt this week and I am so ready. I just want them to check him out and make sure everything looks OK. If he were to tell us that we needed to be in Atlanta on Thursday for surgery it wouldn't be soon enough. We are so ready to get this dreaded time behind us and be able to enjoy him for a long time. I just find myself being so scared that something is going to happen and we won't be able to have surgery on March 1st. I am ready to have the shunt out and get him healed and happy.
We just want to say thanks to everyone for the love, support and prayers. We have been so blessed with praise for our hard work to raise awareness. I set a goal to help other and we have accomplished that goal. We have been contacted to do other media projects and also by some families that are on their own CHD journeys that just needed a comforting conversation. Please pray for Jordan to remain healthy and that God will continue to bless him everyday.
Sunday, February 6, 2011
Wednesday, February 2, 2011
Update 02-02-2011
We went for his heart cath on Jan 6, 2011 and it went as expected. The results of his pressures were good and they said we could proceed with the next surgery. While we were at Children's for his cath the doctor was a little concerned with his oxygen levels. His normal O2 levels are 84-80 but his that day were 75-65 so they decided they would keep him overnight. Which was fine with us because I couldn't imagine getting home and needing to be in Atlanta for an emergency situation. The next day they checked all of his levels and agreed he was ready to go home. Thankfully were on our way home by noon!
The following week after the cath Jordan developed a ear infection. I started noticing him pulling at his right ear. We couldn't tell if it was an infection or did he just find his ear? Home health care came that day and they agreed it was probably a ear infection. He had started getting congested and his O2 levels were dropping again. I took him to see pediatrician and he had a double ear infection. With two rounds of antibiotics they are gone and he is doing much better.
Dr. Kirshbom's nurse called me last week to confirm surgery. Every time the phone rings and it comes up Children's my heart stops. When I answered the phone Tracy wanted to make sure March 1, 2011 was still ok. She told me what to expect and when to stop his medicines. I just sat there and cried for hours after the call. I still question "why" but I am so thankful that Jordan is as healthy as can be for his condition. I am so thankful for him everyday! It will be super hard to hand him over to the doctors this time. It was hard last time but I still feel like I was in a bubble and don't remember half of what happenned.
CHD Awareness week is Feb 7-14th so I have been working on several little things to raise awareness. I just spoke with the Mayor of Albany and he will sign the Proclamation on Feb 7th and Randolph County will sign their Proclamation on Feb 8th. I have also got appointments set up with WALB (local tv company) and The Albany Herald (local newspaper). The Charter School will also be doing a fundraiser that will go towards research that same week. I am very excited that Jordan's broken heart may save someone else's life.
We went to the doctor today and he got a good report from the cardiologist. No changes and he says he is still good for surgery on the 1st. We also had an appointment with his pediatrician and his ear infection is all gone. He had to get his 4 month shots and he was not a happy camper! The doctor also told us that he is in the 25th percentile of weight and height. She said when he came for his 2 month check up he was so little the was not even on the chart. We are so excited that he is growing to be big and strong.
We are asking everyone to continue to pray for him to have strength to go through surgery. Please pray for the doctors and medical staff that will be caring for him. And also pray for us as we hand him over to the doctors. We love this little guy so much!
Monday, January 3, 2011
Happy New Year
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~
Wednesday, December 15, 2010
December 15, 2010
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
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!