Douglas Brookins Collins was born on Monday January 17, 2011 at 11:11AM weighing in at 6lbs 11oz and 20 inches long. It's been an extraordinarily rough 4 days and I am not able to put into words our thoughts and emotions, but I will do my best and start from the begining.
I didn't sleep much through the night Sunday, I had been having contractions that just seemed to be getting stronger. So, first thing Monday morning, Dr. Anzaldo came in and we decided it would be best to deliver him then rather than wait until our scheduled date of January 20th (which would be today!) Brad and I got on the horn and called Dougie's grandparents to tell them the news. The next thing I knew we were being whisked away into surgery... It took about an hour to prep, and get Doug's 'team' of doctors and nurses ready. Once we were good to go, Brad was called into the OR and a few moments later our baby came into this world (Brad has it all on video if you want the gory details). I heard a little cry, and he was handed off to the CHOC team so they could do their thing and get him stable. There were so many bodies in the room, I wasn't able to see my little man before he and daddy went over to the NICU. So I am sure you can imagine how upsetting that was, but it just made me that much more determened to recover quickly and get down there to see him. Although I completely underestimated the pain I would be in.
Grandpa's, Grandma's and Aunties all got to go over to CHOC and meet Dougie. Brad did his best to keep me updated, come to check on me and bring me pictures while I was trying to recover, thank goodness. Just about every hour Brad would be walking to CHOC to check on baby, then walking back to St. Joe's to check on mommy, he kept me updated just about every hour - which was great - since I had hours to go, until I was able to be wheeled over to see my son. About 9:30PM an nurse came to our room and asked if we were parents of baby Collins. She said I needed to get down to the NICU right away and she was there to escort me.... If you can't imagine how unbelievably terrifiying hearing that sentance was, let me tell you, I will never forget it.. and I NEVER want to feel that way again. I couldn't jump out of my bed quicker and all but ripped the IV out of my arm. Brad ran down there right away,it took me a little longer to get over in the wheel chair. I think I held my breath the entire way, which usually takes 5 mins; but felt more like 5 hours, and I prayed the whole time. Once I arrived, I got to see my child for the first time.
Side note: When we found out about Douglas' diagnosis, I did everything in my power to prepare myself. I researched the defect, read all the blogs of other CDH babies, looked at all the pictures. I wanted to be fully prepared for whatever obstacle we were faced with, good or bad.
I was in no way prepared to see my baby for the first time as he was. I wanted more than anything to hold him, kiss him, and tell him everything was going to be just fine because his mommy was there. But I pulled myself together, told him how much I loved him and prayed like never before. Brad updated me on what was going on with Doug, he needed to be put on ECMO. Below you can find more information on ECMO in case you aren't familiar with the machine. We sat in the waiting room with Dougie's Grandparents and his Auntie Jess for the hour long surgery to be done. Once it was over we went back into Doug's room and said goodnight gave him loves then headed back to our room.
Tuesday January 18th: Dougie took to the ECMO very well, they were able to adjust his blood transfusion levels from 115 cc/kilogram to by the end of the day 95 cc/kilos and our goal is to have 0 cc/kilogram at the end' which means his own cardiovascular system is sustaining his oxygen levels instead of the ECMO machine. My dad was able to bless him, which was a beautiful moment, Dougies Papa, Mommy and Daddy all held hands and prayed around him.
Wednesday January 19th: His numbers started to decline for a few reasons so they had to readjust his ECMO, ventilators, and medications. Later that afternoon he was given a head ultrasound, and they found fluid in his crainium (which is a risk/side effect of ECMO). Having researched CDH, and the ECMO machine we've seen what can happen, but, everytime something new happens it feels as if we've been hit by a train all over again. One of Dougies' doctors best explained to us, that in the best case scenario every day will be a two-step forward/one-step back process. So we will be watching the fluid in his head very closely and praying that it doesn't increase.
Thursday January 20th: Dougie is 3 day's old today, and looks so beautiful. No major changes today, although, he did get another head ultrasound and they didn't find an increase in fluid. His blood transfusion levels were decreased from 100cc to 95. Doug had quite a few visitors today: his grandparents, Auntie Nick & Uncle Nate, and Uncle Ben also were able to spend some time with him. I was very glad my big brothers were able to meet and talk to my little man.
Tonight is our last night in the hospital, and after 40 days here I am a little scared and sad to leave. I will miss seeing my wonderful nurses, being so well taken care of, and the free food. But most of all I hate the fact I will no longer be a wheelchair ride away from my boy. The hospital gave us a celebration dinner tonight, filet mignon and sparkling cider... it was a little odd having a celebration dinner knowing the hardest part of our journey has just begun, but nice to have a semi-romantic dinner with my husband for the first time in months. We are heading down to see Dougie now, where we will read him a bedtime story and wish him goodnight. Then hopefully we will be able to get some rest before tomorrow when we move from St. Joesphs to Days Inn Hotel down the street. We want to keep Dougies visitors to a minimum for now, he needs as much rest as possible so his little body can prepare for surgery. Thank you all for your continued prayers and support, and please keep it coming. These have been the longest and scariest 4 days of my life, I pray Dougie gets the strength he needs to overcome these battles and come home soon.
God please bless our little man,
Mere and Brad
About ECMO:
Over the past couple of days Brad has become really familiar with ECMO and the functionality of the equipment. Although he understands, and can explain how it supports our little boy, so many variables can affect Douglas' outcome. In blue below is the easiest read I could find online to fully explain his current support system. Basically what is it is an on going blood transfusion and the ECMO machines removes and add gases as needed. A tube comes out of his vein on the right side of Dougies neck which flows to a machine. The darker blood goes into a pump were it is moved to artificial lung where the blood has the waste (used up gases) removed and the proper amount of Oxygen is added to the blood. The blood is then reintroduced back into his large vein in his neck which flows in to his body.
Before ECMO can begin, a pediatric surgeon places tubes, or cannulas, into large veins and/or arteries located on the right side of the neck or in the groin. Your child will be given medications to prevent pain and movement during the surgery. The surgery will happen in the Intensive Care Unit.
The number of tubes used depends on the type of ECMO your child needs. These vessels are called the internal jugular vein, the carotid artery, the femoral vein and the cephalad vein. Your child may have one special cannula placed into the internal jugular vein, depending on how big your child is. This cannula will do the job of the two cannulas.
The ECMO machine is made up of several parts: a pump, an artificial lung, a blood warmer and an arterial filter. The ECMO machine takes the blue blood (without oxygen) out of the right side of the heart and pumps it through the artificial lung (oxygenator). The blood is now red blood (with oxygen). This blood is warmed and filtered before returning to the child.
The ECMO machine does the work for your child’s lungs and/or heart and allows them time to heal. During the time your child is on ECMO, he is still connected to the ventilator. The ventilator is used to keep the lungs from collapsing while they get better.
At the beginning of the procedure, the ECMO machine does most of the work for the child’s heart and lungs. Even though your child looks much better, it is important to remember that the ECMO machine is doing the work the lungs can’t do.
To see if your child is getting better, a small amount of blood is drawn from the arterial line. This test (a blood gas) checks to see how much oxygen is present in the blood. As your child’s lungs begin to heal, the oxygen level in the blood improves. This allows us to turn down the ECMO machine slowly, to wean your child off ECMO. The machine is turned down until it is doing only a small portion of the work. At this time we may try to take your child off ECMO and measure the level of oxygen and carbon dioxide in the blood to see if the lungs are ready to work.
While your child is on ECMO he receives a medicine called heparin. Heparin keeps your child’s blood from clotting in the ECMO circuit. Heparin may cause your child to bleed while on ECMO. Special blood tests, (ACTs) are done every hour to check how fast the blood is clotting. When your child is taken off ECMO the heparin is stopped, and the time it takes your child’s blood to clot will return to normal in a few hours.
Babies are on ECMO for an average of five days. Older children and some infants may be on ECMO for weeks. The doctor and team determine how long it should take for your child to get better, but the time needed to recover is not always known
