Monday, March 28, 2011

Much Needed Update

I can't believe its been over a month since my last post. I know you probably think I have abandoned the blog. I know so many of you have been keeping up with us through other family members and care for us deeply... I can't say thank you enough! The prayers have worked again... God is good!

Since my last post so much has happenned... where do I even start? We had great success with raising awareness during CHD Awareness week. I was able to help other families and even talk with several mothers that are fighting the same fight. It has been amazing... I hope that I can continue meet others and help them along their journey.

The time went by so fast and before we knew it, it was time for Jordan's Glenn procedure. The weeks leading up to the surgery were a little nerve racking. We were scared but more than anything knew that it would be very hard to hand him over to the doctors. Days before his surgery we just enjoyed every second with him. We knew God was by our side once again but we didn't know what path he would lead us down. We didn't want to have any regrets so we made sure that we made as many memories as possible with him. He got to eat a sucker, slept in the swing and played outside for many days.

We left home on Sunday for the dreaded ride to Atlanta. On our way up there we stopped a couple of times just to give him (and us) a break. We arrived at the Ronald McDonald house around 8:30 pm just in time to take baths and get ready for our big day. Monday morning we got to the hospital around 9 am and we got all of his pre-op stuff ready for surgery. Children's hospital had contacted us several weeks before surgery and wanted us to help with a media project. We agreed to so they started filming us on Monday afternoon. It was a very long and stressful day. Although Jordan did amazing and everything was a go for surgery Tuesday March 1, 2011 at 7 am. We went and picked up my grandparents for dinner that evening and enjoyed some quality time together at Chili's. By the time we finished dinner and headed back to the RMH everyone else had made it to Atlanta. We all gathered in the family room and spent time together that evening. Everyone was exhausted and knew that 5:30 am would be coming soon so we all went our seprate ways around 9 pm.

There wasn't much sleeping going on that night... Jordan wasn't in his enviroment, I was scared to death and Rho was having to make sure we were both okay. We woke up and headed to the hospital that morning and all I wanted to do was hold him tight. For him to not have had his bottle for several hours he was a happy camper... he was all smiles. We all gathered in the waiting room and played with him until they called us back. I felt like I could run out the other door when the nurse said "Kleckley". But what other choice did we have? It had to be done! He loved on us and watched TV while the nurse took his vital signs. They gave him the sleeping medicine and life was good. They took him from me around 7:30 am for surgery and Dr. Kirshbom came out and spoke with us around 2 pm. It makes for a long day watching your watch waiting on the hourly updates. Thanks to our amazing family that came to support us, time went by a little faster. Dr. K said that everything had gone as planned during surgery and that he felt really good about the procedure. We finally got to see him around 3 pm and it was hard to see the smiling happy baby now intubated and having wires and tubes everywhere.

After surgery things moved really fast. They were working quickly to get him extubated and start working toward pulling some wires. They had him extubated by 9 pm and we were on the floor by 2 pm the following day. I finally had him back in my arms by noon that day...but he wasn't very happy. He was hurting and he would rather be in him bed alone and being still. We did everything we knew to do for him but the change to him was major. They kept assuring us that this was normal and that it normally takes two weeks for them to adjust. They let us go home that Friday March 4, 2011 - YES, we were scared to death and he was screaming every couple of minutes. He did great on the way home- couldn't have asked for a better child. The second we walked in the door it was another story.

He was having terrible headaches from the pressure change from the rerouting of his superior vena cava to the pulmonary artery. It was one of the worst experiences I have ever faced. There was nothing we could do to help him. We were giving him pain medicine every 3 hours and in the mean time whatever it took to console him. There were many hours day and night that we would stroll all over the house. That was about the only thing that would make him happy.

We went to the cardiologist on the following Tuesday and they kept telling us that it was normal and that things would get better. By now exhaustion had set in and we were about to all jump off of a cliff. Every day and night I kept praying God, "Please help him, take the pain away" and sure enough almost two weeks to the day I saw my sweet Jordan again. He started smiling and talking again. It was the best feeling in the world! The Sunday after we got home from the hospital my mama brought my niece and nephew over to see Jordan and visit for a little while. My nephew that is 9 looked up at Jordan and told him "I wish God would take the headaches away from you and put them in my head". Then he looked at me and said "Jordan doesn't know what is going on but I do and I know that the headache will eventually go away he doesn't". That was the sweetest and most sincere moment for him. Thanks Joseph for your unconditional love to Jordan. I know that one day ya'll will be best of friends!

We went to the cardiologist again on March 17th by now Jordan was happy and doing so much better. They did an echo just to make sure everything looked good and another chest xray. We got a great report and couldn't thank God enough for all he had done for us again. Dr Cardis told us that that the valve they had hoped would get better on its own had done just what they had hoped for - it went from moderated to mild leakage. We will contine to watch it and hope that it will get better in time. He said that the Glenn procedure itself looked beautiful. He made the comment that sometimes the HLHS babies just do "ok" but Jordan was doing "very well". That made my heart smile and I knew that God had placed this special baby in my arms for many reasons.

Now that we are home and able to enjoy life we have been staying busy. During the week Jordan and I may get out some but we usually go to my parents for a couple of hours on the weekends. He love to be around people and look at the different things. My boy loves to be outside and watch a wind chime. We haven't ever gone this long without seeing a doctor and it seems so strange. I have been checking his oxygen levels and they have been great! I can't begin to thank everyone again for all the support and prayers. We were at a friends house the other night and one of them told me that the kid next door told her that he prays for Jordan every night. It just makes my heart smile to see how God has worked and continues to work in Jordan's life. He will have the most amazing testimony when he gets older.

I will try my best to do better about posting updates... I get so busy with life and enjoying my quality time with Jordan that I forget to post! Will leave you with some pictures of the wild man! Thanks again and We love you !

Jordan's First St Patricks Day 2011

Sunday, February 13, 2011

Feb 13, 2011

We have been working so hard to raise awareness in the local area for CHDs. Jordan and I had a busy week and we are so glad to see nothing in our future this week. We do have a cardiologist appt Wednesday but that is it... YAY! That getting dressed every day is no fun! LOL He is so funny as my grandmother says "he smells a rat", when he wakes up and I am getting dressed he freaks out. He automatically thinks "doctors appointment"- poor fella can't catch a break.

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.

Wednesday, February 2, 2011

Update 02-02-2011

I can't believe it has been a month since I last posted... where does time go? We are all doing well and just enjoying being home with no excitement. We stay busy with doctors appointments and visits from family and friends.

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

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~

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.

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.

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 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!