rebhoward

[color=darkred:880404ca88]Amber first learned that she was pregnant in October of 2006 and confirmed that at her Doctor's office in November of 2006. At her next appt. in December, they scheduled her for a routine ultrasound in mid January 2007, to get a more accurate due date. She went for the ultrasound and as far as she knew everything was fine.

The next day while at work, she received a call from her doctors nurse, Kate, telling her that they saw fluid on the baby's neck on ultrasound and that she needed to come in right then for blood work. When she got there they told her that she would have to go to UAB in Birmingham for further testing and scheduled her for at the OB/GYN Genetic Maternity Clinic at UAB the very next week.

She immediately called me crying her eyes out. I told her not to worry until she had something to worry about. They really hadn't told her anything but that they saw some fluid on the baby's neck.

The next week we went for the appointment with one of the Drs. at the genetic clinic (his name slips my mind we only saw him once). He did an ultrasound and the news he gave us was not good. He told us that Landon had what was called an Omphalocele, a Cystic Hygroma, and a VSD (hole in his heart). His main concern was the Cystic Hygroma because these are almost always fatal in a fetus. With a Cystic Hygroma, it is constantly leaking fluid into the baby's insides causing fluid buildup around all the major organs and not allowing them to develop properly. In Landon's case, he had fluid all around his heart putting pressure on his lungs blocking them from developing. Amber was only 20 weeks at this time. So as far as they were concerned his lungs had no room to develop, giving him a less than 10% chance of survival at birth if he made it to birth. At this time they gave Amber the option to abort Landon or to have him. Amber said "It's not my decision to make that is God's and he will make it when the time it right." I was proud of her and admired her for what she said. I don't think the doctor was too impressed though.

At any rate they scheduled her for an amniosentesis in two weeks to determine if any of the defects he had were hereditary/genetic. This appointment was with Dr. Davis whom we had until Landon was born. The results of this test were negative which was a good sign Dr. Davis said. That gives them a better chance of correcting the defects that he has. He was always very optimistic to Amber and always believed that Landon would make it. He explained in detail the procedures that would follow after birth and that Landon would have to be delivered C-section and so-on. He scheduled us for our first appointment with Landon's surgeon and his cardiologist. We saw the cardiologist first, Dr. Romp.

Dr. Romp was one of the nicest Drs. we had ever met. At this appointment, it was then that we learned that Landon no longer had the Cystic Hygroma that it had miraculously dissappeared and was no longer showing up on ultrasound. Dr. Romp looked thoroughly for it and didn't see any fluid around any of his organs anywhere. A miracle had happened, his lungs were developing and his chances of survival had increased substantially. Needless to say, Amber and I were on top of the world, our cell phones were very busy on the way home that day with the good news. Finally some hope.

We then went to our appointment with the general surgeon, Dr. Bernhart, again a very nice man, very thorough and precise. At the time of our appointment he was unaware of the new findings and was still very grim about Landon's prognosis. We had a hard time convincing him that the Cystic Hygroma had gone away. I still to this day don't think that we did. He laid everything out in B&W about the surgery on the Omphalocele, i.e., how long he would likely be in the hospital, etc. I had done some research on the internet about this defect and already had an idea of what to expect but he explained it much better. However, Amber was in denial and only heard what she wanted to hear. Which is what she did at every doctor's visit. She was totally unprepared for Landon when he was born.

Dr. David decided that Amber would deliver c-section at 39 weeks to give Landon as much growing time as possible. You have to understand UAB, it is a research university and has several interns/students/residents, etc. At 36 weeks Dr. Davis sent Amber to the resident clinic until it was time for her to deliver.

I had not been able to go with Amber to the clinic for first few appts. before he was born. Some how Amber's old records (before the cystic hygroma went away) got sent over there and not the updated ones and at her first appointments they were telling her that she was going to deliver vaginally. I kept telling her to tell them what Dr. Davis had stressed and she said that she did. They then started to stimulate labor on her at about 37 weeks and Amber called me crying and I was livid. I went to the 38 week appt. with her and found out that the very first doctor that we saw was the one that was there at the clinic making the decisions and had no clue about the new findings of the cystic hygroma and could care less whether Landon lived or died in my opinion. I told them right then that Amber was not going to deliver vaginally that she was going to deliver c-section like Dr. Davis had stressed and if they didn't like it that we could speak to someone over their heads. We were scheduled for a c-section the next week on June 27, 2007, instead of being induced. Landon would have certainly died at birth had he been delivered vaginally. He had a giant Omphalocele and it was discovered after birth that he also had a diaphragmatic hernia and that his heart was exposed through his Omphalocele as well.

After he was born they told us that he had the diaphragmatic hernia and that possibly his entire diaphragm was missing but further testing needed to be done. He also had not only a VSD but Tetralogy of Fallot and an Omphalocele. He was breathing on his own but they did ventilate him because of the TOF and CDH. He was born at 11 that morning and that evening around 6 pm he was transferred to Children's Hospital about 2 blocks from UAB.

He had the first of 5 surgeries to repair the hernia and Omphalocele on June 29 at 2 days old. On September 24, 2007, he was transferred back to UAB and on September 29 underwent Open-Heart Surgery to correct the TOF. While waiting for a bed to come open at Children's so that he could go back there to get a G-tube put in and come home, Landon developed Nephrotic Syndrome that caused his kidney's to stop functioning. This was mid October 2007. It was thought then that he would have to have both kidney's removed and a double kidney transplant once he turned 15 - 20 months of age.

He was finally tranferred back to Children's on October 31, 2007, and put in the PICU and immediately started on a continual dialysis. When he went to UAB for his heart surgery he weight 12 lbs. when he came back he weight 23 lbs. with fluid. [img:880404ca88]http://cdhsupport.org/members/weblogs/upload/70/1019145109481736131ef11.jpg[/img:880404ca88] [img:880404ca88]http://cdhsupport.org/members/weblogs/upload/70/8805929874817357976166.jpg[/img:880404ca88] This was the only time in his life that I actually ever thought that he could die. He was so sick and unresponsive and even the doctors were telling us to pray for a miracle. I was on my knees crying and praying so hard that God would let us keep him with us. They were having trouble that day getting his dialysis line started and it was touch and go and so scary. Late that night they finally got it started and got the dialysis going. He remained unresponsive for about 3 days and then miraculously his color started coming back and he was like a new child, better than he had ever been. Even the doctors and nurses were amazed with him they could not believe how good he looked. They still to this day do not know what caused his kidney's to stop functioning. His nephrologist sent his labs all over the world looking for answers and still have no answers.

He continued to improve on a daily basis and even came off the ventilator a few times. In late December, his kidney's miraculously started functioning again as well and he came off the dialysis and they began to prepare him and Amber to come home finally.

On January 4th, 2008, they did a final surgery to insert a Trach so that he would be more mobile with the ventilatior once he got home. The surgery went well with no complications. He was doing great. However, on Sunday, January 6th, 2008, Amber received that call that no parent ever wants to get. It was around 4 am, it was his nurse in the PICU, she said Amber, how close are you, Landon has coded, Amber said that she threw the phone down and put on her jacket and her shoes and ran all the way to the hospital from the Ronald McDonald House, which was a block away.

When she got there, the nurse met her at the elavator and told her that his trach had got dislodged cutting his airway off causing him to go into cardiac arrest. She went in and watched as they worked dilligently on her baby boy. She then came out and telephoned me and told me that he had coded. I couldn't believe it, he was doing so good. I immediately got dressed and called her Mom. Amber then called me back and said they got his airway clear and a slight heartbeat and then she said let me call you right back and hung up. About 2-3 minutes later my phone rang and it was the nurse telling me to come to the hospital to be with Ambe that Landon had passed.

I threw the phone and screamed "NO, GOD NO" please don't let this be true. It was like a bad dream or a nightmare, something I will never forget. And then all I could think about was that Amber was all alone at the hospital and I had to get to her. I pulled myself together and drove to the hospital. My husband was out of town. Amber being alone if something ever happened to Landon was one of my greatest fears. She is like one of my own children, I have practically raised her, her entire life.

After I arrived at the hospital Amber and I went to Landon and held him for hours. It was a beautiful time for our family with Landon. We were later joined by several other family members.

Landon was laid to rest on January 9, 2008, at Enon Baptist Church in Amber's Hometown in a beautiful ceremony.

It is my goal in life to raise awareness about the life threatening defects that took my little man's life. I will never forget him and will make sure that he lives on through me and what I do by spreading awareness.[/color:880404ca88]