Pics of Angel Baby Cooper

These are some pictures that one of Cooper's favorite nurse's Theresa made for us. She was just wonderful and made us lot's of pics when they would bathe him at night.

Happy Thanksgiving

Well first of all Clay and I wanted to wish everyone a Happy Thanksgiving. Today we went out to Clay's family for lunch and then to my sister's for dinner. It was a somewhat difficult day today, I definately have a lot to be thankful for but it is just so hard to think about what things would be like had we not lost Cooper. I guess I just feel like the world has kept going like nothing is wrong and I just can't do that. I definately feel most comfortable at my house just lying around but I realize that I can't do that forever. I think Clay and I are going to go to the funeral home next week and order Cooper's headstone. I feel so bad with not ordering it yet because I feel like there is nothing out there to mark his spot right now. Clay and I have talked about what we are going to do for him for Christmas, and we hope to put a little tree out there and some other Christmas things. I still am dreading the rest of the Holiday's coming up. I really don't feel like putting up a Christmas tree or anything to do with Christmas but it is one of my favorite holiday's so I hate to not do anything. Clay and I are also supposed to have Christmas dinner over here so I guess I have to do something.

I will say that through all of this Clay and I have met some really great people that have been through the same stuff. There is a wonderful website called www.savinglittlehearts.com where there is a family match program where you can sign up to meet other people that have children born with heart defects. It is amazing how common this congenital defect is. Did you know that 1 in 125 children are born with a heart defect? It is the #1 congenital defect for children and it does not recieve much publicity. I do feel that I would love to help start something here in Memphis to help raise awareness eventually. Everyone I have met through SLH have just been wonderful. They have informed me of support groupd on-line and one lady even sent me a sweet book in the mail. It is so sad to realize how many children and families have to go through this. Well, I guess I am going to go for now.

Love, Mommy and Daddy to Angel Baby Cooper Walker

What is Total Anomalous Pulmonary Venous Return?

Information on Total Anomalous Pulmonary Venous Return (TAPVR)

Cooper Walker Burchett's heart defect

Cooper had infracardiac Total Anomalous Pulmonary Venous Return. This type is seen in only about 12% of cases with TAPVR and is the most difficult to repair. Cooper had already developed Pulmonary Hypertension (which is high pressures in the lungs) when his ECHO was performed on the Saturday before he passed. This is one of the side effects from TAPVR because of the stenosis, or narrowing of his pulmonary veins.

What is Total Anomalous Pulmonary Venous Return (TAPVR)? The pulmonary veins are the four blood vessels (two on each side) that return oxygen-rich blood from the lungs to the left atrium of the heart. Total Anomalous Pulmonary Venous Return (TAPVR) is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium, but instead drain abnormally to the right atrium by way of an abnormal (anomalous) connection.

Total Anomalous Pulmonary Venous Return is classified into different types, based on the location of the abnormal pulmonary vein connection:

A. Supracardiac Total Anomalous Pulmonary Venous Return -- The pulmonary veins drain to the right atrium via the superior vena cava. In this type of TAPRVR, the pulmonary veins come together behind the heart and then drain upwards to an abnormal vertical vein. This vein joins the innominate vein which connects to the right superior vena cava and drains to the right atrium.

B. Cardiac Total Anomalous Pulmonary Venous Return -- The pulmonary veins come together behind the heart and then drain to the right atrium through the coronary sinus. The coronary sinus is the vein that normally returns blood from the heart muscle itself back to the right atrium after its oxygen has been depleted. The coronary sinus drains directly into the right atrium.

C. Infracardiac Total Anomalous Pulmonary Venous Return -- The pulmonary veins drain to the right atrium via the hepatic (liver) veins and inferior vena cava. In this type, the pulmonary veins join together behind the heart and then typically drain downwards, connecting to the liver's portal vein system. They then drain through the vascular bed of the liver and enter the right atrium from the hepatic veins.

Common to all types of Total Anomalous Pulmonary Venous Return is an atrial septal defect (ASD). Because none of the pulmonary veins connect normally to the left side of the heart (and thus out to the body) blood is shunted from the right atrium across the atrial septal defect. Absence of an atrial septal defect in Total Anomalous Pulmonary Venous Return is not compatible with survival.

In order for these patients to be repaired they must be placed on a heart and lung machine after 2 cannulas are placed into their heart. A child's heart is the size of their fist so if you can imagine a normal full term infant's heart is about the size of a walnut. This means that Cooper's heart was much smaller than that so the cannulas used in surgery were just much too large to fit into his body. This is the reason that Cooper was considered inoperable for this procedure.

Update

Well Clay and I are doing OK. We just seem to be taking things one day at a time. He has gone back to work but he doesn't have to be gone much. I have my 6 week check-up on December 8th and after that I will decide when I am going to go back. I still am not sure what I am going to do about my job but I plan on going to speak with my nursing director after Thanksgiving to discuss my options. I really want to go back to the PICU I just am not sure that I will be able to handle it emotionally. I had to go up to work yesterday and add Cooper to my insurance so that it would cover his NICU time and then I had to ask them what I needed to do about taking him back off because he passed 2 days after his birth. It was so hard to do. I know I caught the lady completely off gaurd when I asked her that and she just looked at me and said "Oh I am so sorry sweetheart." I still think this is all a bad dream and not happening. Well anyways I was going to share with you one of the books that Mom bought me. It is called "Mommy Please Don't Cry There Are No Tears In Heaven". (How crazy is it that this is the same book that I have given many parents up in the PICU after they lost a child and now I have to read it for myself.)



Mommy, Please Don't Cry... A beautiful angel carried me here!! I met Jesus today, mommy! He cradled me in his big,strong arms. He made me feel so happy inside. Mommy, Please Don't Cry... Heaven in wonderful! Did you know the streets are made of Gold? Real Gold! I have lots of friends, Mommy. We run and play. We giggle and laugh. I can't wait to show you my secret hideouts! Mommy, Please don't cry... When I fall it doesn't hurt! There are no tears in Heaven. I've met a man named Noah. He told me about his Big Boat, All the animals and the very first rainbow. Have you heard of Noah, Mommy? Mommy, please don't cry.. We have lots of parties here; with streamers and hats, and the best chocolate cake ever! When it's time to rest, Angels tuck us in. I never get scared Mommy. There is no darkness here! Jesus is the light of heaven. Mommy, Please don't cry... The angels are always singing. I love to sing with the angels! You'd be proud of me. I have a pretty good voice. I must have gotten it from you. There is a river, Mommy, in the most beautiful garden you could ever imagine..and a huge tree with yummy fruit. The angels call it the tree of life. Mommy, It's so wonderful to be alive in Heaven! Mommy, please don't cry.. Sometimes i just like to be by myself. That's when I think of you. Someday, Mommy we will hold each other tight! Then you will cradle me in your arms, and stroke my hair.. and once again our hearts will beat together. Mommy, please don't cry...I'll wait right here for you. Love, Clay and Melody

Taking each day one at a time

Well Clay and I are doing OK. We have been keeping ourselves somewhat busy lately which is helping. I am still not sure what I am going to do about work. I love what I do but I am just not sure if I can emotionally handle going back to the PICU where I work with children everyday that have the same problems that Cooper did. I know that as of right now I have to go back to work because Clay and I are under my insurance. I do have approximately 10 weeks of paid time off and can take up to 12 weeks off without my insurance lapsing. The only problem is that whenever we decide to do this again I won't have much time off accrued because it has taken me almost 3 years to get this long accrued. Anyways, I go back to the doctor on December 8th for my 6 week check-up. Clay is going to go with me because we still have a lot of unanswered questions. When I spoke with my doctor the other day she told me that they really don't have a reason for why I went into preterm labor. She told me that next time they would treat me as if I had an incompetent cervix and do a cerclage by 16 weeks. After talking with some other people that probably means besrest also. It does not matter to Clay and I though we are willing to do whatever it takes to get a healthy baby. Well I just thought that I would give a quick update. Continue to think of us and keep us in your prayers.

Love,
Melody and Clay

Music Video:CRY OUT TO JESUS (by Third Day)

Music Video Code provided by VideoCodeZone.Com

Come With Me

God saw he was getting tired

And a cure was not to be.

So He put his arms around him

And whispered, "Come with me."

With tear-filled eyes we watched him

fight hard and fade away.

Although we loved him deeply,

We could not make him stay.

A golden heart stopped beating.

Two-little hands put to rest.

God broke our hearts to prove to us

He only takes the best.

A few new pictures of Cooper Walker

Here are a couple of pictures of Clay and I holding our sweet angel Cooper Walker. This was on Sunday October 29, 2006.

What Exactly Happened

Well it has been two weeks now since our sweet Cooper Walker was born. I have had some people ask me what all happened since it seemed to happen so fast so here goes.On Thursday October 26, I started having contractions that I could feel for the first time. They worried me a little bit and so I informed my nurse. The entire time I was in the hospital I was having some contractions but none of them hurt, the only reason I knew I was having them was because the belt would tighten that was around my stomach. Well due to this they increased the frequency and the dosage of my terbutaline on Thursday around 4:00. That seemed to work for the time being. Clay was going to go to his parent’s house to spend the night and get some much needed rest and spend time with our puppy Maggie and my mom was coming to spend the night with me. Mom arrived just before 8:00 and it was about that time that my contractions started up again. I told Clay that I was worried, as I did every time the contractions would start back; I just knew that the time would come when they would be at the end of their rope and nothing would work. I told him to go ahead and go to his parents but just to make sure that he had his phone with him. Mom had brought me some dinner, so I ate that and we watched some TV. At around 10:00 I was having stronger contractions and so I called my nurse again. The whole time I was in the hospital I was very anxious and I told my nurse maybe I just needed to get some rest and that things would calm down on their own. She insisted that I take something to help me sleep and she agreed that it may help. I told her that I would take it around 11:00. When she came in to bring me my medicine she also had been speaking with the perinatologist and he wanted her to give me some terbutaline in my arm to see if that would help the contractions. She gave me the Terbutaline and some Ambien to help me sleep and away to lala land I went. About midnight I awoke to take another medicine and I noticed that I had started to bleed some. Mom called Clay to give him a heads up but I still insisted that he not come rushing up there. It was around 2:00 am that I woke up in horrible pain. I knew that this had to be real labor because I had never felt anything like this before. I was unable to sleep through the contractions and they just continued to get worse. We called my nurse and after speaking to the perinatologist again they decided to put me back on MagSulfate. I told them to make sure that my bucket was close because it was going to make me nauseous. They were worried about me getting sick and putting pressure on my cervix but I didn't know what else to do. It was probably 2:30 am before the MagSulfate was started and within 15 minutes the pain was pretty much intolerable. I know I was driving my nurse crazy but I kept thinking if this is labor then I need an epidural! It wasn't long before my water broke. I had been telling mom for the last 2 hours that I don't know how these contractions wouldn't be changing my cervix. All along they told me they felt fine with me having contractions as long as they didn't hurt because they probably weren't causing cervical changes. Well mom called Clay back and told him he better get up there immediately that Cooper was on his way. Luckily my nurse was in there when my water broke and the first words out of my mouth was "is the fluid stained?" she told me it was a little bit but it didn't look like it should cause a problem. All I have to say is ignorance is blissful and my time as a nurse in the PICU and made me a worry wart! Who cares if my fluid is slightly stained my baby was about to be born at 25 weeks 2 days! Anyways, they phoned my doctor who arrived along with my husband about 15 minutes before Cooper made his arrival. They did an ultrasound to see if he was head down and they thought he was breech so they were preparing me for a c-section. They had anesthesia come in to speak with me and all I could think about was that they were going to have to emergently put me out but I knew Cooper wasn't going to wait for me to get an epidural and that they would intubate me and I was going to aspirate (because I had been eating all day long) and end up in the ICU. Again, I know way too much about what can go wrong. Well the anesthesiologist never made it back into my room. When my doctor arrived she checked me and said that I was complete and that he was head down. Cooper Walker Burchett arrived at 3:38 am all natural, and Clay was able to make it thank goodness.

Of course the neonatologist was in the room when he was born and they quickly whisked him away and intubated him. Then they took him to the NICU to try and stabilize him. After about 15 minutes that neonatologist came into the room to update us and told us that Cooper was already on high frequency ventilation which is a ventilator that can give them lot’s more breath’s a minute than a conventional ventilator and it helps keep their lungs open better. She told me that Clay and I could go in and see him within the hour. They got me up to postpartum and Clay and I immediately went down to see Cooper. He was so small and did not look very good to me. The nurse came over and updated us and I asked her if babies his size ever did well and she said sometimes they do and sometimes they don’t. I knew that all we could do was pray.

Well Clay and I went back up to our room and got some much needed rest. We called to check on Cooper lots and went down to see him as much as we could. On Friday night Cooper had a great night. They were able to get his oxygen down to 60% my morning and I felt that things were starting to look up. He seemed like such a little fighter every time we went down there. They kept having to re swaddle him because he was kicking his legs and moving his arms so much, (just like he did in my belly). We went to see him Saturday morning and they had gone up a little bit on his oxygen during shift change and they told me that he had a positive blood culture but that they were going to repeat it later that day. On Saturday around 5:30 I called to check on him and they told me that he had been anywhere from 60% to 100 % on his oxygen and that there was a cardiologist there to look at him to make sure he didn’t have a PDA. This is a very common problem in preemies where their ductus does not close in their heart and surgery would be necessary but it is a minor problem compared to other defects. I got a bad feeling about this and told Clay when I got off the phone. I started to cry and Clay again reassured me that Cooper is a fighter and he would be ok. Around 6:30 Clay left to get us something to eat and I called him about 25 minutes later and he had just pulled back into the parking lot and said he was coming right up. Within a few minutes there was a knock on the door and I just assumed it was Clay and told him to come in. Unfortunately it was one of the cardiologists that I work with everyday at work and I cheerfully said “Hey were you the one doing his ECHO?” He told me yes and I asked if Cooper had a PDA. He looked at me funny and I said “its worse isn’t it?” I told him that I had completed a Fetal ECHO just because I was paranoid about what could go wrong and I told him my husband should be right in. Clay came in within a few seconds and I told him that something was wrong and I started to cry again. Dr. Waller (the cardiologist) began to explain to us that Cooper had Total Anomalous Pulmonary Venous Return (TAPVR). This is where all 4 of his pulmonary veins do not connect correctly to his heart but his were connected below his diaphragm into his portal vein, or the vein into his liver. I just completely freaked out because I knew how bad this was and I just knew there would be nothing they could do. After he explained everything to Clay and I, he consulted Dr. Gilbert at LeBonheur and he confirmed our fears that sweet Cooper was just too small. They wouldn’t even be able to get the cannulas into his chest to place him on the heart and lung bypass machine to start the surgery. Dr. Waller took the video of the ECHO to a second cardiologist’s house that night to get a 2nd opinion. Clay and I went down to the visitation time from 8:00 – 10:00 and spoke with Dr. Joyner (the Neonatologist) while we were down there. She told us that we did not have to make a decision right then that they would continue to support Cooper but we were given approximately 24-48 hours by the cardiologist’s. This is due to the nature of his disorder. Had he been a term baby, he would have been emergently transferred to LeBonheur that night and surgery would have been performed.

Clay and I didn’t sleep much on Saturday and we called my mom and some friend’s to let them know what was going on. On Sunday we woke up and went to visitation from 10:00 – 11:00. We stayed the whole time and I could already tell a difference in him. His coloring was not as good and his oxygen saturations were lower. After speaking with the neonatologist we decided that we would withdraw support on Monday. We wanted time to spend with Cooper and we had a lot of family to notify. They agreed and we left since the visiting hour was over. We were planning on coming back from 1:00 – 2:00 and so Clay decided that he would run out and get his hair cut in the mean time. My mom was up there with me and at 12:30 Dr. Joyner called and said that Cooper was not doing well, that his heart rate was dropping and that she wanted me to be able to hold him. I completely freaked out and went running out of the room and asked mom to get Clay there. I got down to the unit and they had already taken his oxygen probe off of his foot because it was reading so low. His heart rate was in the 70’s and all I could think about was “He can’t die when Clay isn’t here. Lord, please let Clay make it.” Clay did make it within less than 15 minutes and we were able to hold our angel for approximately 5 hours before he went home to Jesus. We were and continue to be completely devastated but we know that he is in a better place. The nurses in the NICU were amazing. They bathed him and I picked out a sweet gown for him to wear and they put him in it and I got to hold him some more. It was so hard to leave the hospital especially without a baby and with the idea that I would never bring him home. In the past 2 weeks we realize that God did spare us. He didn’t allow Cooper to suffer in the NICU for months and he never had to go through open heart surgery. We still miss him incredibly and I still cry myself to sleep at night. I keep telling Clay that I feel like this is all a horrible nightmare that I am still waiting to wake up from.

Well, anyways I know this was lengthy but I knew some people were wondering exactly what happened so I thought I would just let you know. Please continue to keep us in your thoughts and prayers.

Love,

Clay and Melody Burchett