Wednesday, October 21, 2015

October 21 - Dear Nicholas Sparks (Guest Blogger Dawn Peterson)

Dear Mr. Sparks,

Oh where to begin ... I guess our story begins with Michael age 15 and how much we love being his parents. So much so we definitely wanted more children. It took ten years with eight miscarriages and one ectopic pregnancy, but finally Jennifer was born. We were so happy and still wanting to have more children. Try as we might only to have another miscarriage. At this point we pretty much gave up hope and decided we were fortunate just to have our two beautiful children and we would be happy and give up the dream for more. Well... God had another thought in mind. We found out that we were pregnant again. Matthew Ryan or Elizabeth Rue would be expected sometime in June 2000. We were not sure just when because I was not sure when we conceived. I was so happy. I just could not believe it could possibly be true when we reached the 12th week and nothing bad had happened. We are really going to have another baby! Things progressed as normal. I am a diabetic and require insulin. The shots increased to 4 per day. Small inconvenience to pay for such a reward. But this condition required close monitoring so I was scheduled for a level two ultrasound beginning in my 12th week and to continue every month. Everything looked good! It was time for the ultrasound again and I went to the appointment, alone as always, unaware at the news waiting for me. I must say that the technician was terrific, she showed no sign that something was wrong, but I do remember that it was taking a long time. The name would be Matthew Ryan! Then the doctor come in and my world changed forever. CDH what is that? I had never heard of anything like that. Ok.... Now what do I do was my question and what do we do to fix this. My head was spinning and I was there alone and so scared. The doctor left to call Children's Hospital in Philadelphia. She come back and explained they need films and more tests to determine if we would be a candidate for fetal surgery. So on with the testing. As it turned out we were not a candidate. At the time they did not think the hole in the diaphragm was very large. Good news for Matthew and us. The smaller the hole the better the chances for survival. So on I continued with all my appointments. We never told the other two children there was a problem until later in the pregnancy so they would be able to enjoy the thought of a brother. Michael was so happy; he would finally have a brother. Jennifer was not as excited at first, she wanted a sister. She quickly warmed up to the idea when I explained to her how great it would be to have 2 brothers who loved her so much. Since she adored Michael.this was an easy sell. I saw a doctor for some aspect of the pregnancy at least once a week and the last month, 3 times a week. I had the very best prenatal care a woman can get. I really had thought in my mind this child will do just fine. All these terrific doctors and they are all brushing up with all the latest information on CDH and will be ready for Matthew when he is born. I was getting huge. I was measuring at 52 weeks pregnant by the time Matthew was born. I really worked hard to get him to full term. The doctors told me that had to be my main goal so that Matthew had the best chance for a good outcome. I was on bed rest the last 3 months. I was at high risk for premature labor. Even though I was contracting the last 2 months almost consistently. I really never went into active labor. I was induced at 38 weeks and June 27th, at 7:01 p.m., Matthew Ryan was born to a room full of doctors and nurses. Ken and I were overwhelmed at the amount of people, 17 in all. Matthew was intubated and then rushed off to the NICU for evaluation. One hour later I would see my precious baby, gosh was he perfect looking. How could he be so sick? Reality was starting to set in.

Even after all the appointments and everything I had read from CHERUBS, I still was just now realizing the enormity of the situation. The doctors were terrific and kept us informed. When Matthew was just two hours old we had him baptized. I was so glad his Godmother could make it to the hospital in time for the ceremony. I was in a hurry, just in case! All through the night his condition was getting worse. I had heard the term ECMO from CHERUBS, but really didn't understand what it was and now the doctors were mentioning it to each other. Phone calls to Cardinal Glennon were beginning, they have had the best success with their ECMO unit. At 20 hours of life I kiss Matthew goodbye and he was rushed off to the hospital 20 minutes away. Ken and I would follow as soon as I could get dressed and signed out. The nursing staff was terrific. They had me packed and ready to go in 15 minutes and off we were to be with Matthew. By the time we got there Matthew was prepped and ready to go on ECMO. We could see him one more time. He was really looking sick. All went fine but the doctors were very guarded with his chances. They think the hole is larger than originally thought and this means more organs than expected in the chest cavity and less lung growth then had been thought. We would ride the roller coaster. His first night was uneventful. The next day ironically another child from further away would come in for ECMO. Trevor he was born two hours after Matthew with the same condition. The doctors and nurses were surprised, this had never happened before. This was hard, Matthew and Trevor were never on the same timetable for ups and downs. When one was doing well the other was having big problems and so on. Trevor would have his repair first ... he was really doing poor. Matthew's would follow a week later. His hole was larger, he had almost no diaphragm on the left side and required a gortex patch. The intestines, stomach, liver and spleen had been up in the chest cavity. Both would be on ECMO during the operation. Matthew did great and seemed like he would come off ECMO in 2-3 days. Then the other shoe dropped and he starting bleeding from the chest tubes (he had 3 of them). Then he started retaining fluids from all the blood products he was receiving; soon to follow the kidneys failed. They were able to get them functioning again. But then he was having trouble with his blood pressure. Finally Tuesday, the 18th of July, the day we have been waiting for he will come off today. His stats are good, trials were perfect and they were getting ready. Ken had to go to work, but I would keep him updated. Again I was alone, then Matthew's pressure started dropping. More medicine, but nothing was working and his pressure got VERY low. The call went out to Ken and the rest of the family get here quick. The doctors call heart specialists from around the country- what could be wrong. They did an echo and found nothing wrong. The only explanation was he had become too dependent on the ECMO and they turned the machine back up. The pressures got better, but still not great. Several hours later the decision had been made he would come off and we would let him go with the angels. We left the room while the nurses "got him ready" for us to hold. We came back in and he was dressed in "big boy" clothes. This was the first time he wasn't laying there in just a diaper! He looked so cute! Someone had made him a bracelet for his wrist and was wearing it, he also had a hat on to cover up his enormous head. When I delivered him they had to use suction and for this reason the head had swollen far more than usual. The surgeons did not completely take out the cannulas, but clamped them off and disconnected him from the ECMO so that we would be able to hold him. When the doctor placed him in my arms I remember feeling so relieved to get to hold him while he was still alive. I let out a gasp and said "this feels so good" and then the flashes began. The nurses were taking pictures and recording this moment for us. At the time I felt really odd about this. Now I am so thankful. They are wonderful pictures. My greatest fear had been that he would pass away before he would get the chance to be held by his mother. I knew this was the first and last chance for him to feel our arms around him. Ken and I held Matthew 4 hours as he journeyed on to God. Those were the longest, yet shortest, 4 hours of my life. The happiest, yet saddest also. I was finally holding my son. I had waited 22 days for this to happen. But it would be the first and last time. Matthew I love you so much, and we miss you terribly. We had a very nice funeral for Matthew. Family and friends were terrific. After the gravesite ceremony we all let go of blue and white balloons and sent them to Matthew in Heaven. My sister was really a Godsend. She held back all her grieving during the service to get pictures for me. We have some really terrific shots of all the balloons floating off, just as I imagine Matthew floating off to the heavens.

Michael and Jennifer are doing fine. At first Jennifer thought maybe it was her fault because she was not happy about sharing her room, but now I think we have handled that. But I will be watching her closely. I do have Michael in therapy just to make sure he is ok. Being a teenager is hard enough. But losing a brother who was so loved makes everything turn upside down. Love and prayers are with Trevor who is still in the PICU fighting hard. He has many problems, but has Matthew, his roomy watching over him. Now the question is do we try for another miracle? Only time and God will answer this question.

Matthew's mom, Dawn Peterson (Missouri)

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