Jordan says "One day he is going to be as big as his cousin Brandon."

Little Miracle

Happy Thanksgiving 2010

No matter What by Kerrie Roberts

11-23-2010

So much to be thankful for... God has blessed us in so many ways this year. I never thought I would be the mother to such a precious little guy. I find myself just looking into his eyes thinking he is perfect! This is not the path I would have chosen but obviously God thought it was the journey he wanted us to travel. I have recently heard a song - No Matter What by Kerrie Roberts when I heard it for the first time I knew it was meant for me. Some of the lyrics are:

I'm running back to Your promises one more time

Lord that's all I can hold on to

I gotta say this has taken me by surprise, but nothing surprises You

Before a heartache can ever touch my life

It has to go through Your hands

And even though I keep asking why

No matter what, I'm gonna love You

I know You can find a way to keep me from the pain

But if not, I'll trust You no matter what

When I'm stuck in this nothingness by myself

I'm just sitting in silence

There's no way I can make it without Your help, I won't even try it

I know You have Your reason for everything so I will keep believing

Whatever I might be feeling, God You are my hope

And You will be my strength

I find myself being so thankful for every second I have with Jordan but I still question Why? It just doesn't seem fair...everyday I live in fear of the unknown, wondering what our next doctors appointment will be like and the worst of them all is knowing we still have open heart surgeries ahead of us. I know God has blessed us so much in the last few months and I feel so guilty and selfish for questioning why my son has to be unhealthy. I blame myself everyday for his sufferings. Wondering if I had done one single thing different would he be healthy. It's so hard to look at him so perfect but know he is very sick. Those are the words you hate to hear come out of the doctors and nurses mouth. I know he is sick and he will NEVER be healed but I hate being reminded every week, every day, every second. Every time I look at his chest and know that he only has half a heart and how long will his heart last. I can't imagine my life without him. He is my everything!

I have found a new meaning to my life and my life as a mother. No one could have ever told me not to have Jordan- He is the little boy I have always wanted. I have asked God for him so many times, I even knew what his name would be when I was 12 years old. When I found out I was pregnant it was the best day of my life. Then when I found out he had a heart defect that would never be fixed it was the worst day of my life. I experienced so many emotions during my pregnancy. I can remember sitting at the table looking into Jordan's room and thinking "what if he doesn't get to come home." I am so lucky to have been able to bring him home and have a normal life for almost three weeks now. We are home as a family for the holidays. There are so many families we met this last stay at Children's Hospital that weren't as lucky as we were. My heart still breaks for them. I pray for them daily to continue to find comfort. God has been good and just like the song says I will trust you no matter what and I will find my strength in the Lord. That is so true! So many people ask "How do you face each day?" the only answer I have is lots of prayer and knowing God has a reason for everything and I have to keep believing.

This past week has been very hard. We have several doctor appointments weekly and home health care comes once a week. There is not much sleeping going on in these days. He has so many needs (medicines, breathing treatments, vital signs being checked) that sometimes it becomes overwhelming. But every night before I go to bed I thank God for one more day with him.

We have a cardiologist appointment tomorrow so once again my mind is going round and round. I have so much alone time with him that its hard not to let your mind play tricks on you. I am constantly looking at him to make sure he is breathing and that he isn't turning blue. I will post an update on doctors appointment after we get home. I want to say thanks so much to everyone that has prayed for our family. It is the prayers that get us through so many days that I didn't even want to get out of bed. Thanks for all the unconditional love and support. Times like this is when you see who the people are that love you for you and the ones that really matter in life.

~ We Are Home...Again ~

As you all have probably figured out we are home...again! When we were in the hospital its easy to post on the blog everyday but being home is another story. We are staying VERY busy with doctors appointments and the everyday routine with a baby.

Last time we posted we were getting ready to go to the step down. Once we got to the step down on Friday (11-05-2010) everything went as planned. They told us if he had a good night that we could go home that next day. We were very shocked but so excited! We were a little nervous as to be expected but we were much more comfortable than we were last time. We took care of him that night and he did so good. We got very little sleep because someone was constantly coming in and out of the room. That morning around 6 am the doctor came in and said we were able to go home. You couldn't wipe the smiles off of our faces...Jordan was going home again! We started packing up and getting ready but as most of you know hospital time is very SLOWWWW! We didn't get to actually leave the hospital until four that afternoon. Then we had to go get his prescriptions filled and we were on our way home to Albany.

Once we got home we couldn't be more blessed to see all the surprises "someone" had left us. Thank you so much sweet Aunt Mallory! We are getting way to spoiled with all the good home cooked meals and desserts. That night he slept so good...he was excited to be back in his own bed. We had lots of company Sunday (10-07-2010) everyone said they wanted to come see us but we have figured out they really want to see the baby. Everyone walks in the door and says "Aww...he is so cute! Aww...we missed him so much" but no one ever says "we missed you too." He has changed our lives in so many wonderful ways and wouldn't change any of it.

Monday (10-08-2010) home health care nurse came by to see him. She gave us a good report - he has started back gaining some weight. All of his vitals signs were good and she was very proud of him. Tuesday we had a cardiologist appointment at 1:30pm. We have recently changed cardiologists to a doctor in Macon. When we were in the hospital we spoke with the surgeon about changing and he agreed. It only made sense considering we were driving to Atlanta the night before his appointments, getting a hotel room and then having to drive all the way back. Jordan can only tolerate the car seat for around two and a half hours after that he is out of control. That morning we packed up and finally got out of the door only 45 minutes after our goal time to leave. We have come to the realization we will never get anywhere on time ever again. We made it to the appointment with five minutes to spare. The doctor was great...He was very detailed with all the information he was giving us. Jordan was continuing to gain weight and all of his vital signs were good. They did another echo on him to see how thing were looking. The shunt looked good and the heart squeeze was wonderful. His only concern was the valve that was messed up during the heart cath. Dr. K had tried to repair it while he was in the heart this last time but its still not functioning properly. The cardiologist said we will continue to watch it and hope that it gets better. If it stays the same he thinks it can be treated with medicines. If it gets worse then we will have to have a valve replacement and that is not the road we want to go down. Then he would have two major heart defects and his heart would have to work harder. Meaning it would wear out quicker the older he gets. So for now we will continue to watch it and just pray for it to repair itself or get smaller with time.

The rest of the week was kind of boring. We had a pediatrician appointment Thursday and they all loved him. They were amazing...They understand Jordan's situation and how the common cold could be fatal to him. We were allowed to go in the back door and straight to a room. His doctor is wonderful. He had all good news at that appointment also. We are so proud of him and he just laid there like a little man while she checked him out. He spent several hours with his Dee on Friday. I had doctors appointments for myself and as much as I would love to show him off I left him at home. If you were to see him out in public you would never think anything was wrong with him. For some reason no matter where you are people see a baby and they are instantly drawn to touch them. Especially older people...I can't be rude and say "Don't touch my baby." So the way to avoid him being touched by strangers is leaving him at home. He would rather be at home being held by everyone anyway.

We had lots of company yesterday (11-13-2010). Everyone wants to see the little miracle child - he loves all the attention! He has started looking around and smiling. He has changed so much in the last few days. I find myself just watching him for hours. We have been so blessed! We got some of our Christmas decorations from the attic yesterday. Seems a little early but things take a lot longer now days. Maybe I will have it all put out before Christmas. Jordan loves to look at lights so I can't wait to see him stare at the tree.

Today we are planning on taking it easy and just enjoying the day. Time seems to fly when you're having so much fun! I wouldn't change any of it. We have lots of doctors appointments this week also. Hoping and praying for more good news. Thanks again for every ones love, support and prayers!

11-05-2010

WE ARE IN THE STEP DOWN ONCE AGAIN - one step closer to home! Jordan has done amazing since he got extubated Tuesday. We are so excited about his progress and ready to get him home so we can spoil him!

The last time I posted was Tuesday when he got extubated. I got to hold him several times that day but he mostly rested to recover from being extubated. Tuesday and Wednesday were both quiet days. Wednesday he slept most of the day. They removed some of his other tubes and started weaning him off the oxygen.

Thursday was a nightmare! When I got there to see him that morning he had a rubber band around his head. I was very confused...I asked the nurse why they had a rubber band around my son's head. He explained to me that Jordan needed a blood transfusion. In order for them to give him the transfusion he needed an IV. Jordan had kicked the one out of his foot that morning and they had taken his central line out earlier that morning. So they were trying to see if he had a vein in his head they could use to get an IV. They stuck him around ten times in his head and shaved both sides of his head. It was breaking my heart and I wanted to scream "that is enough." But I remained calm and tried to remind myself he needed the transfusion. After about 2 hours, 6 people later and 30 more sticks all over his body they decided they couldn't get a vein. It had gotten to the point I had to walk out and just cry outside by myself. I couldn't take watching them hurt my child over and over again. He had already been through so much and it wasn't fair for them to continue to hurt him. Once I got back they told me they weren't going to stick him anymore they would just put in another central line. I was much more accepting of that solution than them continuing to stick him. But the worse part of the day is once the surgeon came by he said Jordan didn't need a transfusion. I was very upset! I couldn't believe they had put him through so much pain for something that wasn't necessary. We talked with several doctors and explained to them my concern and how upset I was for the way things happened throughout the day. The doctors understood our concerns and helped make things somewhat better. I couldn't make myself leave him that night. I needed to comfort him and make sure he knew mama would make things better. Other than him looking like a pin cushion he had a very good day. He had pulled his feeding tube out that morning and took the bottle like a champ. He didn't need the oxygen so they removed it also. It was such a good feeling to finally look at him with no tubes on his face. He would just open his eyes and stare at me. I constantly question myself if he is thinking "I love my mama so much" or "why in the world are you putting me through all of this mama." It breaks my heart to see him go through more pain than I have ever endured and probably ever will go through. But I couldn't imagine my life without him. He is an amazing little guy.

This morning when I got to see him he was all clean and smelled like "pink" lotion (mama's favorite). He was in a big boy crib and just looking around. He looked like himself - They told us they were waiting on a room and he was ready to go to the floor. We were hoping that was the news we would hear but we didn't want to get our hopes up. We are so excited that we would be able to stay with him overnight and take care of him. He is such an amazing little guy!
Thanks everyone for the prayers and support! Our God is an awesome God - We've seen so many miracles in the last month.

11-02-2010

Jordan is finally extubated! He is a happy little guy! I called this morning to check on him and they said all of his gases were good. I was hoping and praying for him to get extubated and I would finally get to hold him. When I got to see him this morning the first thing I asked was "Can I hold him?" The nurse said "No, his lactic acid are elevated." Lactic acid is how the body breaks down the carbs and uses it for energy. I was so disappointed that I couldn't hold him. She looked at me and asked was I about to cry. I felt the tears swelling up in my eyes...I was trying to hold them back. I needed to hold my little guy and knew he needed to be comforted. He doesn't deserve to go through all of this.

They started feeding him bolus feds through his NG tube around 8 pm and he tolerated them well. He woke up yesterday around eleven and stayed awake all day! He was so excited to see his mama. When we left around midnight he was still awake. The nurse was going to give him something to make him sleepy. He has been taking baby steps forward and we are very excited about every step closer to home.

~ HAPPY ONE MONTH OLD BIRTHDAY JORDAN ~

We are still not extubated...I called this morning at 6 am and they said he had passed his CPAP trials. I was hoping and praying I would get to hold him on his month old birthday! My arms are aching to hold my little boy. It just doesn't seem fair to him or to his mama. LOL We aren't allowed to see him in the morning until after shift change but of course they had new admits and I couldn't see him until later. I was so disappointed when I walked in and he was still on the vent. The doctor came and talked with me and said he had no real reason on why he didn't want to extubate other than his color. He said he looked pale and he just wanted to give him more time to rest. I can respect his decision because I want Jordan to do good this time.


I hope when I update tomorrow it will be good news! I can't wait to hold him...Please continue to pray for Jordan to be a fighter!