Mom to Landon Carter Dube
December 8th, 2009 - January 28th, 2010
Lancaster, South Carolina
Landon Carter Dube was born December 8th at 5:08 pm by c-section. Carter “Carterbug” was three weeks early, he weighed in at 6lbs 6ounces and 18 ½ inches long. Carter was born breach and had a head full of red hair, he was the spitting image of his daddy.
We spent Christmas and New Years as a brand new family of four. We were careful who we let hold Carter and where we took him because of the cold whether in SC and the fear of the swine flu or just the flu.
Carter checked out fine at his check ups, he was a little slow at gaining weight but quickly caught up and became a little chunky monkey. On January 15th he went in for his 6 week check up (he was actually 5 weeks and 3 days old). Dr. Q was excited Carter had gained a little over a pound and checked out great, there was a little discussion on cradle cap and how we could fix it. Also we had some concerns that Carter had been spitting up a little and seemed to be kind of cranky at night. Dr. Q suggested switching his formula and monitoring his crying in case it was colic.
We left the office with Carterbug and headed to a beach weekend just the three of us; our son was spending the weekend with his dad. The weekend at the beach was great; we did a little shopping, but were careful to keep Carter in his stroller covered. We didn’t uncover him to let anyone have a peek and the only time we took him out was to change his diaper. There was no issue with spitting up or crying over the weekend, so we thought he was feeling better.
On Monday, the spitting up started up again and seemed to be a little more frequently. His pediatrician had said we could expect a little spitting up from changing his formula and he allowed us to add a little cereal so he would sleep better at night. The rest of Monday went smooth enough and Carter slept through the night.
Tuesday, January 19th Carter was not himself, he was cranky and wasn’t happy unless you were holding him. He was grunting at us a lot and wasn’t a happy camper. We tried a couple of things that had worked before and nothing seemed to help. When I took his temperature, he was running a low grade fever (100.1), so I called the pediatrician and they suggested we come in. So we packed a diaper bag, just enough for a doctor visit and headed off to the pediatricians office. Daryl and I were joking about being over protective parents and how it was probably just a little cold.
We saw a NP that day; she was immediately concerned with Carter’s breathing rate and thought he maybe a little dehydrated. The next thing I knew we were in an ambulance headed to Levine’s Children’s Hospital in Charlotte, NC. We were admitted to the 8th floor, Progressive Care Unit for observation. Doctors came in and asked a lot of questions over and over again, everyone had to wear a mask and a gown because they were unsure what was wrong with Carter. The doctors threw around RSV, pneumonia, upper respiratory infection, and the lastly Purtussis (whooping cough).
The whole family had allergy issues and mild colds but were all being treated for, I had even been on antibiotics for 7 days. We never thought anything more than Carter had a cold, even though he had a little cough and nothing else.
Over the next two days, Carter had to be put on nasal oxygen, he was taken for chest x-rays, suctioning out of his nose and lungs, and they even beat his back to loosen up his lungs. Nothing worked and only seemed to make him mad. They even placed an IV in his arm (covering the finger he sucked on) to supplement his lack of milk intake.
On Thursday, January 21st was a better day, Daryl went home to spend time with Zach and get us more clothes. Carter and I settled in Thursday night with a nice bottle of formula, some cuddling in the rocking chair, and HSM 2 on the TV. Carter ate well all through the night and all day on Friday. The doctor decided if it continued we could go home on Saturday morning.
Friday, January 22nd Carter started coughing and lost his breath and turned blue. I totally panicked; if my husband would not have been there I don’t know what would have happened. I just froze in my steps.
Saturday, January 23rd Carter was sent to the 6th floor PICU, for better care and observation. It was wonderful for Carter to have his own nurse and he was her only priority. Abby was a wonderful nurse and by nights end had Carter talking to her. It only took Carter two tries to figure out if he would lie still when she sucked out his nose that she would give him a bottle of Pedialyte. He even started smacking his lips at her when she would reach for the bottle. I was even able to cuddle with him for a little while, which was fantastic and tell him about all of the things we were going to do when we got home. Daryl and I would take shifts staying up with Carter; we never wanted him to be alone and not see one of us there with him. The rooms had couches that were big enough to sleep on.
Early Sunday, January 24th the decision was made to put Carter on a respiratory. He had become fussy and inconsolable, which caused him to struggle even more to breath. That was the last time we saw our Carterbug awake, but we didn’t know that at the time.
The next few days were like a roller coaster, later on Sunday he was put on an Oscillator because he wasn’t strong enough to help the respiratory. January 25th, Monday, was a good day and we were hopeful, family came to visit and we requested that everyone still talk to Carter like he was awake. We wanted Carter to be aware of what was going on around him.
Tuesday, January 26th in true Carter fashion he started going downhill a little. The issue with Carter that had the world stumped was his heart rate was extremely high and his blood pressure was really low. By this time Carter was the talk of the floor, we had three Pediatric Intensive Care Specialists, Infectious Disease Dr, Hemoglobin/Cancer doctor, and enough residences and interns to fill a football field. I tried to explain to everyone that Carter did things on his terms, he was breach and refused to turn, I was scheduled for a c-section on December 21st but my water broke on the 8th.
Around noon on Tuesday, the doctors starting throw around the idea of putting Carter on an ECMO (heart and lung bypass machine), but it would be the last resort. The percentage we were given was 60/40 that he would leave the hospital with us. We discussed our options with the doctor and made arrangements for Zach to come and see Carter before the procedure was done. Zach for only being 10 handled it very well and was a real trooper through it all. Carter went into surgery later that evening and we sat around with our wonderful family and friends and waited. It took about 3 hours for the procedure and we were told Carter came through it ok.
I was not prepared for what I saw when I walked back to his room. My sweet baby boy with these huge tubes in the side of his neck and watching his blood go in and out of them. The ECMO machine itself was huge and required two people to run it at all times. Now Carter had four people in his room, two full time nurses and two ECMO techs. Carter had started swelling and wasn’t putting out enough urine for the fluid he was taking in. The doctors told us it was related to the stress on his body for being so sick. Now we had to worry about kidney failure and other issues related to the swelling.
Wednesday January 27th, was a good day. Carter held his own all day and there were no sudden changes. It was the first day we relaxed a little and talked about a long term plan. They didn’t sugar coat it, we were still looking at a month or more in the hospital before we would take him home. When we went to bed Wednesday night it was the first time I didn’t feel like I was carrying the world on my shoulders.
That feeling lasted about seven hours; we got a call from one of the specialists around 7:00. Carter had a rough night and they had to give him fluid boluses to keep his pressure up, we need to come to his room soon. The hospital is nice enough to have sleep rooms for the parents with critically ill children, so we were just down the hall. Dr. T explained that there was four more medicines they had available to help Carter and after that point the rest was up to him. At this time they had already started two of the medicines and were waiting to see what happens with them on board.
It was hard to stand back and look at my sweet baby boy all swollen to twice his size. They had him under a heat lamp to keep him warm and two huge medicine trees holding all of the meds that were working to keep him alive. An lets not forget the machine that was monitoring his heart and blood pressure that was constantly alarming us that something wasn’t right. It was like a bad dream and we just couldn’t wake up. We had asked the doctors to always be honest and to let us know when it got to the point that they were doing things too Carter and not for him.
We were really worried so we called our family in and asked them to come to the hospital with us, giving everyone travel time. Around 2:00 the third medicine was on board but Carter seemed to barely hold on, he was starting to look model, I think is what they called it. It looked more like marbling to me but what ever word was appropriate.
At 3:00, January 28th the doctor came to us about the last medicine they had available. This medicine wasn’t used very often and was a last ditch effort, but if it worked Carter could stay on it to get him over this hump and on the other side. I have to say by this time they are treating him for everything, whooping couch, fungal infections, pneumonia, and anything else they could think of. The first pertussis test they did wasn’t a good sample so it had to be redone. Also the state of NC only tests for Pertussis two days a week??
We talked to our family about the medicine and decided to give it to Carter. It was like signing our life away, because the medicine would tint his blood and skin blue there were lots of papers to sign to make sure we understood the effects. Although Carter would go back to his normal color once he was better and the med was stopped.
The medicine was administered around 3:30, after about 30 minutes we didn’t see a great change, but the Dr. T wanted to give him more time. We waited a little longer, until Dr. T approached us and said that it was up to Carter from this point and we needed to think about him not making it. Daryl and I started letting our family go back two by two to say their good byes to Carter. It was the longest walk to take over and over again with our family as their hearts break along with ours. After everyone said their good byes we talked to the doctors again, Carter had not improved but had gotten worse. His IV in his foot was blown and they were not getting a good reading of his blood pressure, but they couldn’t stick him again. They were pushing fluid in him every time we walked in to try and keep him stable. His kidneys had completely stopped working and his body couldn’t handle dialysis.
We asked our preacher to pray with us and Carter for God to hold him close and not let him be afraid. I talked to Carter and told him how much we loved him and how excited we were when we found out we were pregnant. There was so much we wanted him to see and so many people that hadn’t got to meet him yet.
I held his hand, the only thing that I could touch that wasn’t stuck with something, told him that I loved him very much. I told him how brave he was and how he had fought a great fight but if he was tired and wanted to go to heaven to go. That momma and daddy would miss him but we would see him again one day. Carter showed us that he was ready to go to heaven and not hurt anymore.
At 5:06, Thursday January 28th, Carter received his angel wings. He went peacefully on his own terms to the arms of Jesus. I truly believe that we will see him one day and that his spirit is with us everyday.
You can contact Felicia at firstname.lastname@example.org