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!

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!

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.

~ 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!

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!!

~ 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!

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 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.

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!

YAHOO!!! Jordan is extubated!!! We are so proud of him! I got there yesterday morning and the nurse said go look at him. I had already spotted the vent and saw that it was turned off. He is a so much happier baby without all the tubes going down his throat. They had also taken the tube out of his nose. I asked them when could he get that thing off of his forehead, she told me they had to wait 4 hours. At noon she took it off and I finally got to see what he looked like without all that stuff on his face. They also took him off his oxygen because his oxygen levels were fine without it. Around 1 pm yesterday they put in a feeding tube to start feeding him my breast milk. They also took his catheter so he is finally just peeing in a diaper. But everytime you change a diaper you have to weigh it (we pray for pee in CICU). He has had a big day today and he still managed to look at me for hours. Yesterday was the first day he has been awake and looking around.

When I called the nurse this morning to check on him she said he had a wonderful night. He is up to 9cc of milk per hour and tolerating it well. They will continue to increase it throughout the day until he gets to 20cc. He is off one of his blood pressure medicines. If he tolerates his feedings today then they will take out his heart lines. Once they take them out they better watch out because his mama is never going to put him down. He is 11 days old and I have only held him 3 times for maybe an hour each time.

Everyone keep praying! He is a miracle baby and its all because of God!

10-11-10

Jordan is doing so good. We are so proud of him. He had a good day yesterday - he is waking up more and opening his eyes. He is not liking the tube in his throat. He gets very aggravated with it and it breaks my heart. He has to pass 3 CPAP trials (where they turn the vent off and let him breath on his own for a hour) to get extubated. He took is first test around 5pm on 10-10-10 and he PASSED!! and his blood/gas levels came back good. When I called to check on him this morning they did the other two test at 11pm and 5am and he PASSED them too!!! He is amazing and we are so proud of him. The doctors will do rounds this morning and decide if he is ready to be extubated. I really hope so cause I think he will be so much happier. Once they extubate him they will take the tube out of his nose also. Today will be another big day for him with all the adjustments. He will also start getting his mama's milk today through a feeding tube. They will only give him a few drops just to make sure his body can handle it. Poor little guy he is 10 days old and never been fed. He is making such good progress and we appreciate all the prayers. God is working miracles in his life and ours. We thank everyone for all they have done and for praying for our family.

10-10-10

Today is the day I wanted him to be born...thought it would be cool to have your birthday 10-10-10. Closure went really good yesterday. He tolerated all the adjustments and slept most of the day. They wanted him to have sleep so he could recover from his big day. We are so proud of him! I just can't believe he has done so well. We still have MANY steps to take but we are willing to take baby steps.

When I talked to his nurse this morning she said he had a good night. They are starting to ween him off his pain medicine and ventilator settings. They have gone down one step during the night and he did good. We are going to continue to pray for him to tolerate all the adjustments so he can get extubated soon. I can't imagine having that tube in my throat. Once he gets extubated they will start trying to give him something to eat. That will be another BIG step for him. Heart babies have a really hard time with feedings.

Thanks everyone for all the comments, texts and mostly prayers! It's amazing to see God's work on my own child. Keep the prayers coming everyone of them are felt.

10-9-10

Today was my due date. I can't believe he is already a week old and I've only been able to hold him three times. The hospital called earlier and said Dr. K had decided to close his chest this morning so please take time out and send out a special prayer for him during this procedure. We are hoping to be able to see him around lunch time.

This has been an unbelievably stressful time for all of us. We appreciate all of the kind words, gifts and especially all of the prayers. We all have learned some huge lessons about how God is in control here. There is no set plan for any of this. The doctors have given us some time lines and keep reminding us that all of this depends on Jordan...his reactions to medicines...whether fluids come out of his body or not, etc. We had a peace about us on surgery day that we still have today. We are leaving it all in God's hands.

We want to spend every minute possible each day with Jordan. We appreciate those of you who have respected that when you visited and all of you who brought things and did things to help us to be able to do that. Keep all of the prayers coming for us and all of the other Heart Babies and their families. They are all greatly appreciated!!

Jordan is already ready for the game. GO DAWGS!

10-08-10 ~ 6:00 a.m Update

I just got off the phone with Jordan's night nurse. She said he had a good night and all of his levels are stable. They are slowly weening him off of his oxygen and breathing machine. Please continue to pray for this amazingly strong little boy.

Remaining Stable

We have spent the most of the day by Jordan's bedside. His levels are remaining stable and constant. Right now that is their main focus. His blood pressure and oxygen levels are where they need to be. The surgeon came by today and said they would close his chest on saturday or sunday. This is another critical time for him. The swelling is going down and he is starting to move around a little bit. Its so hard to see him move his arms and legs with his chest still open. Your sitting there watching your son's heart beat and wondering if he is in pain. The nurses promise me he is on good pain medicine. I personally can't imagine being him - He is such a fighter! Please continue to pray for him. I pray to him every night and tell him angels are all around him. That they are telling him all night long how much he is loved! I know his life has touched many people and my wish is that he will be a witness to someone someday because of his journey.

10-07-2010 ~ 6:oo am Update

Jordan is stable - The nurse said he had a good night. All of his levels are constant and remaining in his "sweet spot". PLEASE CONTINUE TO PRAY!

I would like to say THANK YOU to every single person that has been praying for Jordan. He is an amazing little boy. God has prepared him to be a fighter. There is no way we could have ever gotten this far without the prayers and support. Please continue to pray!

It has been a long and stressful day! We got to see Jordan this morning for an hour or so before he went to surgery. We knew that he needed positive energy so we went to see him with smiles on our faces. They let me hold him for a while before he went to surgery. We told him how awesome he was and how much we loved him. We were able to follow him to the operating room and once we got to the desk we had to say our goodbyes. The nursing staff kept saying you are the calmest parent we have ever seen but it was amazing that morning when we woke up there was a peace and calmness in us. I knew that God was with Jordan and the medical staff. I have seen the power of prayer for the past 6 day and its been an amazing experience. Surgery lasted approx. 6 hours - they called me hourly with updates. The phone would ring and your heart would stop, you would listen to the nurse with the update and you could get a sigh of relief, then you watched the time minute by minute until the next update. They carefully chose their words with the updates saying things like "everything is going as expected." Around 2 pm we talked to Dr Kirshbom and he said Jordan's surgery went as expected. They did have to leave his chest open but the nurses keep telling us it's better for him. You can never imagine going in and seeing your newborn son so helpless and actually seeing his heart pumping in his chest. It was an overwhelming experience to sit there in a daze and watch the nurses work on your son. They are constantly changing medications, his O2 levels, checking his chest tubes and drain tubes. There are tubes and wires all over him. It's a very humbling experience and all you can do is praise God for each minute. I have always heard the saying "what doesn't kill you, will make you stronger" well we have become firm believers in this saying. God has a purpose for this Little Guy! The first 36 hours are very critical - this is the time they are trying to find his "sweet" spot with all of his stats. When you sit there you watch numbers and hear alarms and pray that it's not the "bad" alarms. This is a lifestyle I never thought I would have to experience. We are adjusting and I can't imagine not sitting by his side and just looking at him. Due to the risk of infection, we can't even touch him. It's a terrible feeling when your arms ache to hold him and you can't even touch him.

We know the journey ahead of us it going to be long and hard but we know God has his hand on Jordan. God is guiding us to down unknown paths but we find comfort in so many little things. With the support of our amazing family and friends, we know that prayers are being lifted up and they are taking care of the "little things". Especially a BIG thanks to my mother as she sits and waits patiently to help get anything we need or want. The nurse told us the other day we could put some socks on him so Dee ran to the gift shop and bought his some socks. His first pair of socks he ever wore came from his Dee...could be trouble! She has already spoiled him so I guess its too late now. Thank you so much to Mallory and Greg as they run around like crazy people at home seeing about the mail, the dogs and anything else that comes up! Keep all of the prayers coming for us and all the other heart families!!!

PLEASE PRAY

The day we have dreaded has now become reality. Jordan will have his first open heart surgery tomorrow morning at 7:15 am. We have met with several doctors today and we know the days ahead of us will be long and hard. But we have no doubt that Jordan was given to us for a reason and he will continue to be a blessing to us and many others. His life has touched our hearts to a point that we never could imagine. We look at him for hours and just wonder how something so perfect could have something wrong with his heart. We have fallen head over heels in love with him and we are praying for a miracle. We have seen God work in our lives and his life over the past 9 months and I know he won't stop now. Jordan has a purpose on this earth! People all over have been praying for this precious boy and we are asking for many more. Please pray for the doctors, medical staff, and for our strength in the days ahead. We are falling back on our faith and we know God is holding Jordan's hand! We have been told everyday how wonderful he is doing and how lucky he is that there are no other problems. All of his other test have been normal and he is completely healthy other than his heart. All the nurses want to take him home because he is so perfect! All of your prayers have helped us make it through this journey so far so please continue to pray as we take the next step tomorrow morning.

We are sorry we haven't been able to respond to many text, emails and phone calls but we have recieved everyone of them and we appreciate them all. Please keep them coming! Once things settle down we will keep in touch better but for now we are enjoying every second with our little boy.

10/05/2010

I never knew what hospital time really was all about...Rhonda and I were in there with him yesterday and we looked at the clock and it was 6 pm. We are spending as much time with him as possible. Mama is here with us and she has be an awesome help. She takes second shift when we are at lunch, pumping or just need fresh air. He is so precious! We read to him, pray over him, and just tell him how much we love him. We've had 4 wonderful days with him!

Yesterday we ALL got to change his diaper and hold him. I was so excited! Rhonda was on cloud nine...she was instantly in love! All I can say to Jaxton is he better watch out. Jordan is going to be his competition! Dee has lots of love for her grandbabies and they are all so spoiled!

We are getting ready to go see him now and we will update everyone when his surgery will be as soon as we know something. The surgical board met yesterday afternoon and they said we should know something later today. The doctors don't make rounds until 6 pm so we are hoping they will tell us the plan then. We aren't ready mentally for the next step but we are ready to get him closer to being home where we can hold him and love on him all day long. Everyone please keep praying. We feel the prayers and he is doing so well. Thanks to everyone! God is good and he has blessed us in so many ways!

Quick Update ~ 10/04/2010

I am so sorry for not updating...Things have been a little crazy! Jordan had a wonderful first night at Egleston. We weren't able to go see him until 11:30 am because the doctors had to make rounds. It's one of the hardest things to be told you can't see your son. But he has had WONDERFUL nurses! We are so happy and blessed at the care he is receiving. We are allowed to call and check on him as much as we would like so you can imagine they already know our voice just from Hey this is...She just says hold on let me transfer you to his nurse. He has had a GREAT day. We've had a GREAT day! We have so many things to be thankful for today:

~ He is stable and doing wonderful

~ He is on room air - they took him off the high flow cannula - He is doing really good breathing on his own

~ I got to hold him for the first time EVER - It was amazing! I am in love with him forever!

~ While I was holding him he pee'd on me - I didn't care - It was the best tee-tee!

~ I got to change his diaper for the first time....(wonder how many parents have taken changing their child's diaper for granted)
~ As soon as I had to put him back in his bed I needed to go pump and Thank God my milk finally came in. I have pumped many time (every 3 hours) with no luck! Jordan helped mama's milk come down. So excited I will be able to provide him with the best formula.

~ Rhonda's family came up and spent some time with us. They made us smile and laugh (something we really needed) and they got to see our precious little man.
~ We got to spend several hours just looking at him and praising God that he is doing so well!

When we got there after shift change he looked wonderful...The nurse has tucked him in nice and cozy. He was so content and happy. It made us so happy to know he would get a good nights sleep.

We are so blessed to have amazing friends and family. Some people are total strangers and they have given us amazing support. We are so appreciative and thankful! We couldn't have made it this far with out all the prayers! God has been good to us and i have faith that he will continue to walk with us down this unknown path!

We've been SO blessed today! I can't begin to express the feelings we have in our hearts tonight. GOD IS GOOD! Please continue to pray. We are still unsure of when his surgery will be but when we find out we will post because we will need SO MANY PRAYERS:

- For guidance of the doctors hands and giving him wisdom to help repair Jordan's heart

- For Jordan to find amazing strength within himself and come out fighting from surgery

- For the nurses to have knowledge and patience to take the best care ever of our little man

- We know there will be good and bad days but pray for us to have peace within us in the days to come and know that God will never leave our sides

- Please continue to pray all for the other heart moms and babies!

Jordan Lee Kleckley- 7lbs 11oz- 20 1/4 inches - 6:37pm

It's official!!! Our son has arrived. Even though it took most of the day, the labor went fairly smoothly. The midwife came in about 2:30 and said Wendy was dilated to 5cm and they increased the pitocin. She said that she would be back in 2 hours and that we needed to see steady contractions 2 to 3 minutes apart for the labor to progress enough to start the delivery. She came back around 4:30 and checked the cervix and we were all shocked to hear that Wendy was fully dilated. They moved her around some and said we want to give the baby 30 minutes to stabilize and then you will start pushing. At 5 they realized they had turned off the pitocin and turned it back on and said we will be back in a few minutes to see if you are contracting again. They came back in and said let's do this and Wendy did a wonderful job pushing. At 6:37 our son entered the world!!

We will update more and tell about the long details tomorrow once things get settled. Our journey has just begun and we still need LOTS of prayers. He is stable and in NICU - they started the medicine that will keep his heart working properly until surgery. One of the side effects of the medicine is his breathing will stop. Basically he forgets to breath. We went to see him at 12:15 am and they are debating on intubating him. He will be transferred out to Egleston in the morning. Please PRAY! Many prayers were answered to day and we felt everyone of them... Thanks for every ones amazing support!

I guess we better get used to waiting!!!

okay, now she is dilated to 5cm and they increased the pitocin so that the contractions will come more frequently. They said if she can get 2 hours of good 2 to 3 minutes apart contractions that will be enough to get things going for good. Wendy is still resting and enjoying feeling no pain right now. Jordan's heartbeat is looking great.

So we are hoping by 5pm we will be getting ready to get him out of there. Wendy is so ready for this to be over. They say he has a full head of hair just like Mama!!

Keep the prayers coming!!!

No turning back now!

We finally got moved to the labor room at 2:30 am. It was like a secret mission, they came in the night and gathered all of our things and we took off for the new room. Then they woke us up at 5:30 to take out the cervadel. Wendy was able to take a quick shower and of course straighten her hair. She was already having some contractions on her own. At 7 they started the pitocin and she was dialated to 2 cm. Everything was progressing as they expected. The midwife came in and broke her water, not a great experience for her.

She has had her epidural now and is resting getting ready for the action to come. Everybody here has been super nice to all of us. We will have a high risk team and neonatologist in the room during the birth to take care of Jordan as soon as he is born. The cardiologist will come soon after to do his evaluation.

Keep praying. We are hoping he will make his debut this afternoon or early evening.

Had to slow things down. Baby J was hiding from the monitors. Doing great now. Wendy's bp went down from the epidural but better now. She is still contracting on her own every 3 to 5 minutes. They will start the pitocin back up in 30 minutes or so and check her again and see what happens. She is resting now and he is doing great.