Collett-Arquelles, Daniel

[admin]

[left:fce1410403]http://www.cherubs-cdh.org/Album/new/collett-daniel.jpg[/left:fce1410403]I wanted to say thanks for sending me your newsletter. I only wish someone could have helped when Daniel was born. But now 3 and a half years later I can honestly say that I feel comfortable talking to other CDH parents and I’ve had a lot of questions I couldn’t answer so maybe your newsletter will help lessen the stress of the unknown for new CDH parents! I was told 5 and a half months into my pregnancy that my child’s heart was missing one chamber. Well at 7 months and many doctors later and a lot of high-tech ultrasounds (Doppler) we knew that I had a CDH baby and I met with a neonatologist and he told me that the mortally rate for CDH babies was 96% and in his own words "I’m sorry Ms. Collett, but most CDH babies never live to see the light outside the delivery room". I think I cried enough to fill the ocean from that point on. I developed toxemia poisoning at 7 and a half months and was hospitalized at 8 months; strict bed rest up once daily 30 minutes in a wheelchair until deliver! I had three amnios to check for lung maturity-No lung maturity. Fetal distress set in and well delivery day came quickly by a C-section on Sept 3, 1992. Wow I’ve never seen so many people fit into one small room! At 6:59 am Daniel was born and my husband was told to leave the room and everyone was running around. My doctor came over while I was being stitched up and said "Jeannie, Daniel isn’t doing well. He is now intubated and not doing well, he was taken away being bagged faster than I could imagine anyone pumping". I only saw the top of his head. Four and a half hours later Daniel was brought to my recovery room to say goodbye. I was able to touch his tiny fingers and tell him how much I loved him and to be strong. Then he was taken 26 miles away by Angel II Transport to Egleston Children’s Hospital. I was called 2 hours later only to be told his condition was going down hill and he for sure had a right-sided CDH. The doctor then explained that the last resort was ECMO but he wasn’t sure Daniel could qualify for it but he explained it to me and told me the risks involved and how experimental this was. I gave my permission for any and all intervention nessacery to save his life. I was called 5 hours later and told ECMO was started and his condition went way down hill. Up and down for six and half days. After 4 days I finally was able to see and count my baby’s fingers and toes. I cried and cried, he didn’t even look like a baby. He looked like something from a sci-fi movie. I was so scared, I was told not to talk or stimulate him; let him rest up for the operation. His eyes finally opend at 9 days of age. September 17th at 14 days old; time for surgery. Wow, he came up after surgery 9 and a half hours later on lower vent settings than before the surgery! More ups and downs, infection set in. Talk about a scary feeling. There was a lot of talk about what to do with him-his reflux kicked in and everything was upside down! By the grace of God he pulled through-I was able to hold him for the first time at 23 days old. I finally felt like a mother. At age 2 months, 21 days, Daniel was taken off the vent and put on oxygen via nasal cannula which he was to come home on. He started being fed 1cc per hour and switched formula 5 times before we hooked up with Pregestimil. We came home on Dec. 3rd with 3lpm of oxygen, a NG-tube, pulse ox, apnea monitor, and 13 types of meds and aerosols every 3 hours. A lot of work. We were home 6 hours and admitted to Scottish Rite with RSV. Back on the vent for 2 months. Home 14 hours, admitted for Roto-virus. Home 3 weeks, admitted back with respiratory distress (in for 5 weeks). Back and forth for 15 months. Lots of doctors appointment, ENT, GI, Pediatrics, Pulmonary, Surgery, Speech, PT, OT, etc. Frequent ER visits, admissions. We were off NG feedings which was a true blessing from reflux at age 2 years 1 month. We were off the apnea monitor at 2 years 3 months. Off the oxygen at 2 years 10 months. We still have the pulse ox and use it now and then when he gets worked up! Now age 3 year 6 months, we haven’t been hospitalized in almost 2 years. Thank you, Lord. Daniel is healthy and happy. He is down to 2 meds per day, no physical therapy, speech, etc. He uses the pulse ox through the night. He runs, talks, counts, etc. A normal 3 and a half year old. No one really knows what the future holds. The doctors predicted surgery before age 2 again for the gortex patch repair. It hasn’t happened yet. Thank God. I learned a long time ago that it takes a special person to be given a CDH child. Please no matter how tough it is and how fragile your child is and how much equipment they are on take them out. Your child needs it for development and social skills. I took Daniel grocery shopping at least twice. We became friends with clerks there who watched his progress and love him. Treat them as normal as possible. My big problem with Daniel now is discipline. How do you discipline a child who had such a tough start? They can press your buttons just like a normal child. And remember, take time out for yourself and your marriage. Believe me, I almost lost mine. To expectant parents; listen, listen, listen, and learn. The more you listen and learn, the more you know and can help your child. Also speak you peace. Stop your doctor, as questions, you are your child’s best advocate. Speak for them. Here’s wishing all of you a lot of love and luck!!! Hug those babies everyday and continue to pray!



Updated 1998:



As you recall, Daniel had a right sided diaphragmatic hernia with ECMO and reflux, etc. We are now doing much better! Although we have had pneumonia twice this year what a trip! The first time ever and it hits twice! He is now 5 years old and 43lbs and actually wearing the correct size for his age for the first time in his short lifetime! We have been having just a little respiratory trouble with RAD. Since mid August, Prelone is our best friend lately. No hospitalizations (knock on Heaven's door) in 3 years. In closing I'd like to say God Bless you, along with all of the other members and their little CHERUBS.


Written by Daniel's mom, Jeannie Collett (Georgia)
1996, Updated 1998