Spencer, Makenzee

[left:1e67fcd5d4]http://www.cherubs-cdh.org/Album/new/spencer2.jpg[/left:1e67fcd5d4]Makenzee was my sixth pregnancy. She was due March 21, 1998. The pregnancy went along fine with no major problems. Just the usual morning sickness and uncomforts of being pregnant. That is probably why nobody realized she was so sick. Tell after she was borne. When March 21st came and went the DR's nor I was to concerned something different I was actually over due instead of early. I went in twice a week for water checks and fetal stress tests. Don't worry ever thing looks fine I remember being told. The day before I was scheduled to be induced my water broke. That was 4pm April 1st at 11:05pm Makenzee was borne. I never heard her cry, and then I knew something was wrong. I kept asking what was wrong with the baby? The Dr. and Don (my husband) telling me everything would be fine. After a few minutes one or two Dr. Pruss told me to ring the call light, by then I already knew there was a problem. I kept looking over to the little bed they had on the other side of the room, but I couldn't see anything just a lot of Dr.'s and Nurses working on her. More kept coming into the room. After a round five or ten minutes (which seemed like forever) one of the Dr.'s (I never got his name) had her in his arms wrap in a white blanket, Said they would bring her back or take me to her as soon as she was stable. I'll always remember how purple she was. By 11:30 p.m. a Dr. came back in the room and told us that we had a sick little girl. She has C.D.H and needed to be life flighted to either Madigon or Children's hospital of Seattle. Then a nurse came in to let us know she would be flown to children's. Makenzee would require E.C.MO. They would be waiting for her. Don got directions to Children's and left to be there so she wouldn't be alone. The Dr. explained the best he could what C.D.H was and that they weren't sure if she even had a left lung or if her heart was working right since they found a murmur. He gave her a 10% chance of survival if they could stabilize her enough to be flown to Seattle (which is a five-minute flight). I signed all the consents and then was taken to see her that was an hour after she was delivered. At around 3:00am she was finally ready to be flown to Seattle after they finished placing chest tubes to relieve pressure in the chest so she could fly. From her records I later learned she had coded in the helicopter on the way to Children's. By 5:00am a precious little girl was on E.C.M.O. Shortly after that Don called to let me know what was going on. At that time I asked him to ask if he could find someone to bless her. Which he did? At 9:00am I released from the hospital so I could go to Seattle to be with her. She spent the next week critical, vent dependent, but fairly stable. On the 13th of April they tried the first ECMO trial off after the first 15 minutes her SATs and blood gases were so poor the stopped the trial off. On the 14th they tried other trial off this time she made it the hour, but her co2 was too high. This also was the case for the 15th. ON the 17th Makenzee was placed on the oscillator to she that would help her lungs better the vent. The first couple of days nothing changed. We were no closer to coming off ECMO or surgery. April 21st trial off ECMO again not good, The DR's informed us they did all they could except the surgery to repair her diaphragm. So at that time surgery was scheduled for that afternoon. Makenzee was in surgery for three hours. We were told the surgery went well. We also found out at that time that her stomach, intestines, liver and spleen was all in the chest (on the leftside). And that the front off her diaphragm on the left side never formed they had to build her one with marlex and gortex. The next few days were rest from the surgery days. On the 26th Makenzee was taken off of ECMO it was decided it was not doing her any good. It was a rough night her condition was getting worse. She stabled out in the morning so we went home to get clean clothes and check on the other children. The Dr. called to let us know that her SATs and gases were dropping and he didn't think she would make it much longer. We got there and the Dr. said you won't believe this but her SATs and gases are okay. We waited with her and later that evening the numbers slowly started to fall. We was informed they was grasping at straws now. And gave her a steroid and Diphyridamole and but back on the ventilator. I mention the Dipyridamole because at the time Makenzee was only the second baby given this drug for pulmonary hypertension in Seattle and their pharmacy could find no other data on this drug with babies. This seemed to work her SATs were good, blood gases were the best they had ever been. And for the first time the ventilator was being reduced (pressure/rate). This continued for the next three days. Then her SATs would drop they would do some adjusting, she would be okay. They placed her back on the oscillator. We did this for a couple of days. On the morning of the 4th I was meet at the wash area by one of the DR's He told me it was not good, he just talked to my husband. Always a bad sign when the Dr. calls your house. When Don called back I told him he better come to the hospital. I asked the Dr. the chances for Makenzee's survival he answered poor, she would not have a child hood, she would be oxygen dependent the rest of her life and probably on a ventilator, possibly deaf and blind from all the measures being taken to save her life. But he wanted to give her twelve hours. In that twelve hours I had seen my baby have mini codes every three to four hours. At 12:00am as they asked us to leave the room, my heart knew it was time to put her in Gods hands. When we came back in the room after about 15 minutes I told them that was enough they could care for under the care plan but no more special measures I couldn't do this to her anymore. Don asked me at that time could I let her go, the answer was and is no, but I love her enough that I will. They asked us to leave so the could put her back on the ventilator. We went up to the chapel and prayed. After thirty-four days I finally got to hold our little girl, Don and me Took turns. At 10:00am we were told that her kidneys were failing and they could put her on dialysis. We declined. At 12:30pm Makenzee died in our arms.


Written by Makenzee's mom, Melanee Spencer (Hawaii)
1998