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.
Wednesday, 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.
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
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
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
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
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
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
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
Please just keep praying! We feel the power of prayer all around us!
Friday, October 29, 2010
Thursday, October 28, 2010
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.
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
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
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
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
Monday, October 11, 2010
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!
Sunday, October 10, 2010
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.
Saturday, October 9, 2010
Friday, October 8, 2010
Thursday, October 7, 2010
Wednesday, October 6, 2010
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!!!
Tuesday, October 5, 2010
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.
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!
Monday, October 4, 2010
~ 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.
~ We got to spend several hours just looking at him and praising God that he is doing so well!
Friday, October 1, 2010
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!!!
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.
Thursday, September 30, 2010
Then it's all up to Jordan to decide if he wants to come out and play or not. As long as there is no stress on him they will let me deliver him without a C-Section. If anything looks wrong they will change the plan though. We have a team of high risk specialists and a pediatric cardiologist that will be waiting to evaluate him as soon as he is born. They will all come and meet with us after their evaluations and let us know the plans for his treatment.
Please keep us in your prayers tonight as we get ready for the long road ahead. After nine months we will finally get to see his precious face. He is already spoiled rotten and we can't wait to spoil him more. Well, it is ambien time again so hopefully i can get some much needed rest before the big event. We are as always, praying for all of the other heart babies and their families tonight.
We are still in a holding pattern, imagine that. We are waiting to be transferred to another room and then they will start the cervadil to soften my cervix. From what they told us, unless I go into labor on my own prior to it they will start the induction Friday morning. So, hopefully before tomorrow is over our precious one will make his way into the world!! We are so excited and scared and feeling all kinds of crazy emotions.
Thanks for all of the messages and prayers. We are asking everyone to pray for all of the heart babies because some of the babies' blogs we have been following have been having hard times. We are just about to start many of the same things that they have all gone through and will need all of your support and prayers.
We got here about 8pm and they hooked up an IV and the NST machine to check for contractions. They said the Dr would come in the morning and they would scan me and decide where to go from there. They gave me something to sleep and we will have to wait and see what happens in the morning. Keep all of the prayers coming. We hope that we will be seeing our little man some time tomorrow, well actually today since it's after midnight!!
Monday, September 27, 2010
Friday, September 24, 2010
We've been following several blogs since the day we found out about Jordan's heart condition. It has helped us get prepared in so many ways and its given us so much encouragement. But it also makes us so aware of the fears we could soon be facing. One family had their baby 6 days ago and they are fighting for his life right this second. Another family has been in the hospital with their baby for over a month and still have a long journey ahead of them. We find ourselves waking up to check their blogs and going to bed at night checking for updates. Even though we have no idea who these families are personally, their lives have affected ours and we are broken hearted for them. We pray for these children and their families just as much as we pray for our own. We know their hurt could be our reality in the next few weeks - it really hits home. I just want to ask everyone please pray for these families. God knows who they are!
I am personally doing good. Having some pains here and there but nothing too bad. I am still just resting and trying to get mentally and physically prepared for our journey. Life is about to take us in directions we have never faced. God is in control and I know he will see us through any fears we have. Please continue to pray for Jordan, the doctors and us as the time is coming so soon!
Tuesday, September 21, 2010
09-18-2010. It was TOTALLY AMAZING... It was such a blessing - all the support, time, effort, talent and donations. I felt God's presence in the church as soon as I walked in. God has blessed my life from the day I found out I was pregnant. He continues to show his love and mercy everyday! I don't know if words can ever describe the amount of appreciation we have for everyone that made that night special just for us and our family. The donations are so appreciated and will be used to help us on the unfamiliar road we are soon to face. But with the love and support of others I know we will be blessed. Please continue to pray for Jordan to have the strength to face the battles ahead of him, to give the doctors the knowledge and skill to fix Jordan's heart and for us to have the strength and patience to care for him along the way. We know that God is holding everyone of our hands and leading us down the path that he wants us to go down!
I can honestly say that being pregnant and knowing that your child has a heart defect will make your pregnancy a totally different experience. I don't know if its because the future is unknown and you don't want to take one second for granted or what. But I don't think there is a kick, punch or hiccup that is missed. Then when he isn't moving your worried something is wrong... I am starting to get a little sad thinking about him not being inside my tummy. I love to watch him move and feel him press on my lungs so bad that I can't hardly breath. It has been an amazing experience that I am so thankful for everyday! I can't imagine not having gone through the pregnancy and never taken one day for granted. The days are counting down...13 more days!
I stopped taking the Brethine on Friday 09-17-2010 around 10 a.m. We were a little nervous but content with the doctors decisions. By now he is 37 weeks and he is basically full term - all of his major organs are developed and properly functioning. The weekend went great! I rested A LOT and tried to pack a few little things to be prepared if he decided to come during the night.
I woke up yesterday 09-20-2010 and just didn't feel right. I started having some pains that were unfamiliar. I tried to ignore it but it wouldn't go away. So I decided I might better call the doctor. Of course their answer was for me to come on in and lets check things out. When I got there the pains had not stopped and may have even been a little worse. The hooked me up to the monitors (NST) and of course I was having contractions. Its funny how you know everything about all the machines because its just routine now. I could basically work all of them by myself if I needed to. The contractions weren't close enough that they were really concerned. He said for me to go home and go to bed. To take medicine for the pain and sleep as much as possible. He also mentioned that he didn't think I would make it until Oct 4th but for me to wait it out and come back in a week.
Today I had an appointment with my high risk doctor. Dr Edwards says Jordan is growing big and right on schedule. Other than his heart is a healthy little boy. He is starting the breathing process and his lungs look great. He reassured us that if I went into labor I knew to get to the hospital ASAP and to call the doctor on the way. That I didn't have 30 minutes to waste in registration. I will see him again in one week and that will be our last visit! Thank goodness because I am so tried of doctors appointments!
We are getting all of our last minute items washed and packed. I feel like we are as ready as we will ever be. I am so ready to see him and hold him in my arms. Thanks everyone again for all the love, support and prayers. I would also like to ask everyone to pray for the other HLHS babies. We have other blogs we've been following and most of their journeys haven't been as easy as they had hoped. God continues to bless each one of them but they are needing extra prayers to give them strength and faith.
Wednesday, September 15, 2010
Tuesday, September 14, 2010
We had a safe trip to and from Atlanta Monday. The doctors appointments went well and we've made all the final arrangements. Our first appointment was with the OB doctor. He said to come off the Breathine (meds to stop contractions) at 37 weeks which will be this coming Saturday. So I am a little nervous about that but he said Jordan will be considered full term and the medicine will not do any good after 37 weeks. If he wants to come he will come with the medicine or not. He said for us to be at Northside on October 3rd at 7 pm and they would start the procedures for inducing on October 4th. He explained the process and how they wanted the labor to go...if all goes as planned he will be born sometime that Monday afternoon.
When we induce, they will have ALL the doctors on standby waiting for his arrival. They said if he is stable I may be able to hold him for a few minutes. He will be taken to NICU for them to get him on the monitors and give him the medicine that will keep his heart functioning properly until surgery. That makes me really sad to know I've waited 9 months to get my hands on him and I won't even be able to enjoy that special time with him for long. But I want them to do what is best for him and if its getting him to the NICU, then that is what we will deal with. All of the people at Northside have assured us that they are ready for him and will know exactly what needs to be done. After he is stable and the doctors have looked at him, they will let some of the family go see him and once I am able they will let me go see him. I can't imagine how exciting it will be to finally get to see him. It breaks my heart to know I may not get to hold him for weeks though. I will be asking everyday "Can I please hold him" I know when the time is right they will allow me to but I want to feel him against me so badly. The cardiologist will do an ECHO within the first couple of hours and discuss the results with the surgeon and they will meet with us to discuss the next steps. His condition will determine ALL of the calls. If he is doing well they may keep him at Northside until I am dismissed if not they may have to take him on to Egleston. So my prayers are that he will be able to stay at Northside until I get to leave...can't imagine not being able to see him. Once he gets to Egleston the surgery will be scheduled and he will be the boss. We have to take this one step at a time now. Let's get him here first and then we will all figure out what he needs and go from there.
Our second appointment was with the perinatologist. They did an ultrasound and said my cervix is still closed (which is wonderful news) and then they scanned Jordan. He is growing good and starting to practice breathing on his own. That is a very good sign of his overall health. They say he weighs about 6 pounds give or take 6 ounces and is right on schedule. The appointment went well and she was very positive about his condition and they want me to continue resting until the big day!
With all the Atlanta doctors appointments behind us we are patiently waiting for the BIG DAY! It will be here before we know it. Can't imagine how our lives are about to change. We've waited on this day for many years! I've always wanted a little boy - now my dreams are coming true.
Thanks again to everyone who has prayed for us and Jordan. We continue to feel God's blessings everyday. Our next appointments are Tuesday with the OB and perinatologist in Albany. We will keep everyone posted.
Saturday, September 11, 2010
We had our third and final baby shower today! It was very nice and we got lots of good gifts for Jordan. He is all set and spoiled for sure! Thanks to everyone who helped make the shower special just for us and Baby Jordan!
I've had a boring week...nothing eventful at all! I went to the doctor Wednesday and they all agree that he is doing great and right on schedule. Dr Inman is very happy with his activity and say to keep feeding/watering him. Dr Edwards says he ready to be born anytime now to just let it happen. I feel a little differently about that. I am not ready for him to come just yet. I think the longer he stays inside the tummy the better he will be for surgery.
I am officially 8 months pregnant today! Can't believe how fast time has gone by. It seems just like yesterday I found out I was pregnant. The pregnancy has been a breeze other than the early labor. The stress from Jordan's diagnosis is a whole other story. We are ready for the next chapter in our lives - when our precious boy comes into this world.
We are leaving tomorrow to go to Atlanta for an OB appointment to make the final arrangements for his birth. We will keep everyone posted. Thanks for all of the love and support!
Wednesday, September 1, 2010
The past few day have been some of the hardest days for me. I have such fear of the unknown. With CHD (congeital heart defects) you never know what your child will face at any point in their lives. I have been so blessed to talk with other heart moms and they are amazing. Their faith and strength has been incrediable. They are always willing to help you with advice and give you hope. I hope that I will have the same faith and strength in 5 weeks when Jordan is brought into this world.
There is apart of me that wishes he could just stay in my tummy forever! Everytime I feel him kick and roll over I know he is safe. As long as he is inside of me he is protected and has no pain. The moment he is born he will have to fight for his life FOREVER! I have questioned WHY? WHY MY JORDAN? WHY ME? I think that its only human nature to ask that question. For all of you that have kids - when they fall and hurt their knee it hurts your heart for them. So I can't imagine how our lives will be effected. With him having to go through open heart surgery just days after he is born. Everyday is a gift from God - I'm finding it very difficult to live in the moment, even though I know that this is what is best for the both of us.
There are so many emotions as a heart mom that you have to face - anxiety, fear, anger, guilt, regret... hope, faith, joy, happiness and being thankful. We have been following so many heart babies blogs ever since Jordan was diagnosed with HLHS at 28 weeks. That is a day we will never forget and our lives have not been the same since. The normal lives that most people share will never be normal for us again. We will always have the thoughts of when his next surgery will be, making sure his immune system stays strong, taking medicines and going to doctor appointments. We were reading up on the blogs we follow last Sunday when we found out that a family had to say their goodbyes to their son that was only 2 days old. Our hearts broke...we were devastated for the parents and family. We know that this is something that we may face with our Jordan but we keep so much hope and faith that he will be strong and God will allow us to take care of him forever. We have prayed more in the last 14 weeks I think than I have in my entire life. We find ourselves praying for our Jordan, our strength and faith, for other families facing the battle of heart defects. I have questioned why is this even such a thing... these are innocent babies that are born with a horrible defect that they will have to deal with for the rest of their lives. We are also following a blog of a family whose baby is 2 weeks old and is doing great. Their story has been such an inspiration to our lives. Everyday we wake up to check her updates to see how baby Joshua is doing. I have been emailing his mother the past few days and its amazing how heart moms are so willing to help in every way possible. God bless everyone of them! God gives these babies to us to show us that miracles happen everyday and that God will never leave us or forsake us!
God has a plan for each one of us and sometimes his plan is far greater than we can imagine. I know that Jordan will be a blessing to our lives! God will use Jordan's life and broken heart in a powerful way. The path we are soon to go down is unknown. To sit and watch the monitors, to question why the numbers are changing, to see all the wires and tubes connected to our baby boy. The helpless feelings we will face as Jordan fights for his life. We will soon face our fears and we will need our family and friends to walk with us, sit with us, cry with us, wait with us and pray with us.
I was reading a heart babies blog and the mother had a link to the interview posted below. I watched the video and begin to cry and find peace in my situation. Everyday will be a challenge and I know the days to come will be hard. But God is there and he will never leave us! This quote came from the interview and it is something I have repeated in my head all day long. I have to have faith in it!
"If we can trust God with our eternity, we've got to trust Him with our now."