Monday, July 14, 2008

Cecilia's Story

In late February of 1999, I was late. We had been trying, but not trying too hard to get pregnant for some time. Each time my period came, I was getting more upset. This time, I was a little upset by being late at that time because I had just left my position with the American Red Cross Blood Services and was looking for a better job. Brian by then was out of the Corps and working as an Assistant Manager at a Car Wash. I COBRAed my health insurance, and in April went to see Claudia Sencser of Albemarle Obstetrics. I decided to treat the pregnancy as a “human condition”, not a “medical condition” and opted for Certified Midwives. I was eleven weeks pregnant, heard the heart beat and was so excited. I had the typical tests, my iron was a little low and I was prescribed prenatal vitamins and extra calcium supplements because my pregnancy with Rachel, I was preeclamsic. To treat the nausea I was having in the afternoons, Claudia suggested Ginger Tea or candy. I thought that the baby I was caring was a boy because Rachel gave me real morning sickness, this one gave me “afternoon nausea”. All pregnancies are different, but I took it as a sign.Brian went with me to most of my appointments, the look on his face the first time he heard the baby’s heart beat was something I will never forget. The “Big Bad Marine” melted. My appointments went well and I scheduled an Ultrasound. The Midwives said it wasn’t necessary, but I wanted to have pictures and a video, and for “reality” to hit both Brian and I.
On July 14, 1999, we saw Dr. Noonan for the Ultrasound in his office. I had heard from many people Dr. Noonan was very good with ultrasounds and could get the sex 90% of the time. We didn’t want to know and I was convinced it was a boy. Dr. Noonan noticed that the heart and the stomach were pushed a little to the right and immediately scheduled an Ultrasound with Dr. Siva Thiagarajah at Martha Jefferson Hospital. Dr. Noonan said he wasn’t sure and said Dr. T would know and was the best. (I later found out that Dr. Noonan guessed exactly what it was because it was in the medical records I transferred myself.)

On Friday, July 16, 1999 Brian and I were at Martha Jefferson Hospital to see Dr. T. The Ultrasound was much clearer and you could see the baby better. He did confirm the displacement and then we were led to Jennifer Boner’s (MS), office. She told us our baby had a Congenital Diaphragmatic Hernia and the chances for survival were 50%. We were devastated. I was normally not one to cry, I bawled. I left the room and went outside where there was a chair. I came back, still crying and listened to our options. We could go to Philadelphia for fetal surgery and we could have the baby at the University of Virginia Medical Center and allow the surgery to take place there and the baby will stay in the NICU and if all went well, she could be home soon after. Brian left the room to use the restroom and Jennifer told me there was one more option, termination. At 22 weeks and after seeing the baby, I couldn’t do that. (But if there were something else wrong that put survival more dismal, I would have considered it.)

When Brian came back, she said we should have an amio to rule out any other problems that might exist. This is when Dr. T impressed us most. He got me to calm down enough to go through with the amio that day. The weeks waiting for the results were horrible. The amio results were good, no other problems, and I wanted to know the sex. I had read that it was best to name a baby that had problems so that if they didn’t survive at least we would have the knowledge that this little person was a person with a name. Cecilia Winn it was. I was glad for a girl because they tend to fight harder than little boys do. We also decided to go to the University of Virginia Medical Center and let her have the surgery after birth with faith, hope and prayers. We figured that if she had half the determination as her parents, she would be just fine. I transferred my Obstetrics care to Dr. F. John Bourgeois. The midwives didn’t have “rights” at the University of Virginia.

Dr. B was great. Every time we saw him, he patted my shoulder, held my hand and was very reassuring. He is the only person who can sneak up behind me and I don’t jump. Brian has never been able to do that. In late August we met with Dr. Robert Boyle, Neonatologist, who was very straightforward with us. He told us all about ECMO and about Pulmonary Hypertension and the recovery for Cecilia. We also met Dr. Bradley Rogers, Pediatric Surgeon. I was a little upset with him because our appointment was for 9:30 and we didn’t see him until almost 11:00. He was working in a “clinic” that day and as we all know, and I now realize, it is impossible to spend a set amount of time with each patient. I was also working with a woman whose husband was a Surgical Resident who told me that Dr. Rogers was regarded by all surgeons and hopeful surgeons as “the man”. I felt bad about becoming so upset with him for the lateness of his appointment. (I had a very bad experience with the University of Virginia Hospital, when I had Rachel there, which was very hard to get over.)

I was scheduled to be induced for the first week in November. I worked until October 29, 1999. My only problems with the pregnancy were edema of the feet. The only shoes I could wear were my tennis shoes. I had gained about 40-45 pounds, and I was taking Nifren to prevent premature labor. I kept telling Dr. B that I was too stubborn to go into premature labor. He kept saying it wasn't up to me, but her. Brian went to each and every appointment with me; we took childbirth classes, breastfeeding classes and a class called “Babies Don’t Come With Directions”.

A baby shower was thrown with LOTS of pink! Cecilia received lots of clothes and accessories and everyone stuck with the “Bear Theme” for the nursery. I kept telling people that Cecilia would either like bears, or like bears, she had no choice in the matter.We went to my prenatal appointment on October 28, 1999 and Dr. B said I was 1 centimeter dilated. Brian’s reaction, “You are a cheerio, honey!” (At least he remembered childbirth Class!)

Dr. B decided to induce me on November 2, 1999; I was to come to the hospital on November 1 at 5 PM. We went in Monday, November 1 and started the process. Dr. Sherry Noa, Fellow from Uva’s NICU came up and explained what would happen and had us sign papers to put Cecilia on ECMO, if needed. Brian was amusing me because my room was right above the helicopter-landing pad. He kept telling everyone who would listen, “Cecilia is going to take over the NICU, take over the hospital and get her Daddy the helicopter!” Later that evening they started putting gel on my cervix and I started mild contractions. We tried sleeping, but that was almost impossible. At 7 AM that morning, Dr. B came in and checked me I was 3 centimeters and they started the Picosin drip. He also broke my water. Brian describes it as a “babbling brook” sound, there were at least 2 liters of water that rushed out and my tummy shrunk a lot! That is when labor got real intense. The nurse asked me if I wanted an epidermal and I said no, just Stadol. I did get a shot, which helped a little (very little), and was standing to help the labor move along.

Cecilia’s heart rate then began to drop at each contraction. Dr. B came in and I could hear him speaking with the nurse and he mentioned Cesarean Section. I didn’t care. I knew that they would do what was best for the baby and me. He asked me to go to the bed and lay on my side. I did and then he asked me to try the other side. He examined me and Brian later told me blood came out. The Anisthialogists by this time had been paged 5 times. When they finally arrived, Dr. B was checking the baby and me.

They started to introduce themselves to me and Dr. B yelled, “We don’t have time for that @#$, I’m going to get ready, have her ready by the time I am there. I will be there in 3 minutes. Sorry, Brian, you can’t come."

I was given a drug - Magnisium- to stop the Picosin, which made me shake all over. Brian kissed me and I was rolled to the OR right next to my room. The look on Brian’s face was of fear, in reflection I wish I had told him I would be fine and so would our little girl. I remember the Anisthiaologists telling me they would take care of me, and the mother tigress protective mode kicked in and I said: “Take care of my baby.”

I was out by 8:59 AM and Cecilia was out at 9:02 AM. The NICU staff was there ready for her. Nurse Kelly told Brian he had a beautiful baby girl and that I was doing fine, Dr. B would be in as soon as they finished closing me. She told him that Dr. B had just beat his record for speed in delivering a baby via Cesarean Section. Kelly also told him that he spoke to me the entire time. Dr. B came in and told Brian he had a beautiful baby girl and that I was doing fine and I should come to in a few hours. He said he didn’t know what went wrong. The theory was that the umbilical cord became clenched and at each contraction, closed off. We don’t know, we do know that Dr. Bourgeois was the first to save Cecilia’s life. The NICU staff questioned her gestational age because she was 5 pounds, 13 ounces and 19 inches long. I was according to all accounts, 38 weeks. They also questioned this because she was covered in vernex. I know full term babies can be covered in vernex. Brian saw her in the incubator when they wheeled her out of the OR. He said she was pink from head to toe, mad, with her fists clenched. We later learned her Apgar scores were a 1 and a 3 - not good.

Brian said she had this look on her face as if to say, “I was in a warm, wet, dark place and you all took me out to a dry, cold and bright place - put me back now!” Little Miss Attitude!

Brian came into the recovery room; I was feeling the pain of the incision. I asked about Cecilia and he told me that he had seen her and she was beautiful. I asked him to go down and check on her for me. He first went to Dr. B to ask him to order something for my pain. It was a little before 10 AM and I was awake. (I should have warned everyone that I don’t stay under long.)

“She’s awake?” Dr. B asked surprised.

“She said she was in pain, asked about Cecilia and asked me to go check on her.” Brain stated.

“Yes, she’s awake.” Dr. B said.

They both came back into the recovery room. Dr. B ordered something for my pain and Brian went down to the NICU to check on Cecilia. While he was down there he gave his daughter the “Facts of Life” talk because she was naked and he told her she should not “show off her goodies to anyone!”

Dr. Noa called me to tell me Cecilia was very beautiful, had the most beautiful alabaster skin. The problem they were having is that they could not find veins in Cecilia to start IVs. She asked if they could put in a Central line, I said of course. At that point Cecilia was on an osculating vent and doing great. Brian had seen her and was told to leave. She developed a small lung hemorrhage. They were putting her on ECMO that afternoon. I had still not seen her. This and I was stuck in the recovery room because they were carpeting the 8th floor. I finally got to my newly assigned room at 2:30 PM. A Chaplain was called so we could talk and pray Cecilia’s first surgery to be placed on ECMO.

Dr. Rogers and Sherry Noa came in after the surgery and said everything went well, she was doing fine and they would get me down to see her as soon as they could. My mother came and brought Rachel. Rachel was very offended when she found out she was sitting beside my foli bag! Dr. Bourgeois continued to check on Cecilia and me. He visited while my mother and Rachel were there.

Finally at 6:00 PM, Nurse Kelly came up with Dr. Sherry Noa, with the NICU packet of information and my first look at Cecilia, a Polaroid picture. I went down to the NICU around 6:30 via a wheelchair and I had to stand to see her. ECMO uses gravity and the beds are high. You must stand on a stool to see the babies. I was in awe; Cecilia Winn had a head full of hair, long eyelashes and alabaster skin. If you put wings on her back, she looked like an angel. She clenched my fingers with her little hands. She seemed to relax as soon as she heard her Mommy and Daddy. I stayed as long as I could with her, but I was in so much pain and was so physically weak from my morning.

Emotionally at that point I was on cloud nine. My Cecilia was one of the most beautiful baby girls I have ever laid eyes on. (Rachel’s only defect was her cone head after a 24-hour labor.) The next morning, Brian went to work and I went down to the NICU, without assistance. When I walked in, Donna was on the ECMO side and the bedside Nurse Shannon was sitting beside her, their jaws dropped. I thought it was because I wasn’t wearing makeup, I later found out they were in awe of Mom, who had just had an emergency c-section the day before, coming down by herself.

Later, they would be in awe of Cecilia. Aunt Anne visited Cecilia and was also in awe of her being “so perfect”. Anne was moving the wires gently out of the way as she examined every inch of her. (I was surprised the nurses didn’t ask her to stop.) The following day, Cecilia’s Grandmom saw her and was amazed that she wasn’t under more "distress." I am assuming that many years ago, these neonates were more distressed without the drugs, IVs and other things that make them more comfortable. Jennifer Boner also came and visited Cecilia. Dr. T would call and check on Cecilia throughout her stay. Dr. B, would also.

That evening, when Mommy and Daddy visited, Cecilia finally opened her eyes for us. I had rubbed her feet she inherited from her father. Her eyes opened and she focused on Mommy and on Daddy. She had the most beautiful blue eyes, framed by lashes that would never need mascara. Two more things she got from her Daddy. I was released from Uva the following day and had to rely upon Brian taking me to the hospital, when he wasn't at work. Cecilia had to have a circuit change for ECMO on day five. Her SATs kept going up and down, they waited for the "window of opportunity" to do surgery.

On Thursday, November 11, Veterans Day and day after the USMC's Birthday, Cecilia had her surgery to correct the diaphragmatic hernia. Mommy and Daddy were there at 6 AM; we spent time with her. She knew something was up. Then her parade started. They had to move Cecilia, the ECMO pump, and 02 Tank and staff from the 7th Floor to the 2nd Floor. The only thing missing were the elephants and clowns. We ran into Dr. Bourgeois and told him of her parade and the lack of elephants and clowns. He told us they were not allowed in the hospital anymore because they made too much mess.

Nurse Janet had been there all night and was staying throughout Cecilia's surgery. While Dr. Rogers was doing the surgery, his Nurse, Martha Kiber, was giving us updates on how the surgery was going. Resident Michael, his wife and him had been in our child birth class, came out and updated us. Dr. Rogers came out and told us things looked well. A gortex patch was used, but she had plenty of lip from the remaining diaphragm. She had a pretty good size left lung, and they had to use a silo patch. Closing her would take some time.

You think surgery is the big hurdle and after that everything will be fine. That is not true. Cecilia became very swollen, her ECMO flow went up to 500, which is 120% support, and she stopped urinating. By November 14, they started hemophiltration through ECMO for her kidneys. Her blood pressure would drop as they pulled fluids off of her and then they would increase her fluids and she would swell and blood pressure would be fine. Adding fluids to lungs is not good, but neither is low blood pressure. I was also beginning to become very concerned about how much time she was on ECMO. On the morning of November 15, I called Dr. Rogers' office, intending on just leaving a message for him. I figured he could talk to me when I was at the hospital. I spoke with him then.

He told me not to be concerned about her time on ECMO that her time could be longer, but she was about average for her time on it now. I felt relieved and was getting ready to go to the hospital, gathering up my breast pump equipment and other essentials. Then the phone rang. Cecilia's heart rate and blood pressure dropped, it did not look good. I called Brian at his first day of his new job. He arrived at UVa first and Cecilia's nurse that day told him "We don't know how much longer we can sustain her on this system."

Dr. Rogers told Brian that wasn't true, Cecilia was now stable and she was doing nothing that was not unexpected. When I arrived, Rebecca's Mom was there and she found Brian for me. (Rebecca was a preemie and her Mom later revealed to me she had lost a son prematurely before.) Rebecca’s Mom also gave us Cecilia’s Birth Announcement out of the local paper and would pray for her as we did for Rebecca. Then there was Danielle's family. They literally camped out in the waiting room. Danielle was in the PICU, a ten year old that was full of life - she could never die with as much family support. We would constantly hug and help support the other relatives that were there and visa versa.

Brian and I stayed that whole day with her. Dr. Boyle came in late that afternoon and told us that they were trying to find the balance for the intake and out take of fluids with her. He explained that it was very hard to determine that with all babies in situations like this. All of them are different, all react differently and that is something that is true with adults also.

Cecilia went through her first step to close the silo and they thought she had a seizure. They gave her Phenobarbital for this, but she seemed to be fine. Her flow on ECMO went up for a while and then went back down. They had to do several circuit changes of ECMO for her because of clotting. On Friday, November 19, I do not know if it was lack of sleep, depression or just not wanting to see Cecilia suffer anymore, I snapped. I did not do this in front of her. I told them I wanted her taken off ECMO. She had been on too long and it did not look very good. I was in tears, I did not want to loose my baby girl but I did not want her to suffer anymore either.

Jodi, Social Worker and her bedside nurse of the day both led me to Dr. Boyle. I told him my concerns. He told me that he had told us that this was a tough road to haul. He said that each of these CDH patients do different things and Cecilia was definitely not a text book case. He said that her flows going up and down due to the circuit changes and silo reductions were not unexpected. He also said that Congenital Diaphragmatic Hernia was the most gruesome disease. He also assured me that her lungs looked better than they ever had and she was ALL there. Her kidneys were something that presented a challenge. They could put her on another form of Hemophiltration, but it had never been done at UVa before and that they have only one doctor there that had helped put it on an infant before. He said not to be too worried about her time on ECMO and he was glad that I did not have a Pollyanna mind set. He said he was usually the first on the team to make the call to let the patient go but it was a team decision there, not an individual. I was also reassured that she was not in pain, maybe uncomfortable and they really did not know for sure that she had a seizure. He also asked me if I was getting enough rest. In retrospect, I wasn’t getting enough and when I was sleeping it was "fitful rest" not a relaxed sleep. Dr. Boyle also let me see the x-rays. I thank that man for calming an emotional Mom who was tired and stressed.

On November 21, everything was looking better, her flow was down to 270 and she started to make urine, not a lot but some! She even threw up! Her stomach tube was blocked so she decided to help out everyone and a beautiful pea green substance came out of her mouth. Brian called her nurse over; I was in the breast pump room at the time. Nurse Jill was suctioning her as Brian held her hands and spoke with her. "Gee, Daddy, something I can do without medical assistance!" Brian said was the look she gave him. We both congratulated her on her beautiful vomit. They placed her on the Osculating Vent after they had cleaned her up to help with her little lungs. November 23 Thanksgiving Day, Cecilia’s flow was down to 240 her kidneys were still off and on and when on, only one or two ccs came out. Brian and I were in and Brian was trying to convince her to be a University of North Carolina fan. I am a University of Virginia fan; our house is very interesting when the two teams meet for football or basketball.

Dr. Rogers came over and I did not recognize him at first because he was in a pullover sweater and slacks, I always saw him in a white coat or his blue scrubs. "What's going on here?” he asked when he saw Brian whispering in Cecilia’s ear. "He is being a bad influence." I said and explained the sports rivalry in our marriage.

He stepped up to remove her bandages. (Nurse Tracy Adams had put a bow dressing on her that could be untied.) It was the first time we had seen her incision or the silo. We did not faint. Dr. Rogers said he was planning the final closure or another reduction for the next day. He also told her chest x-rays were looking promising.

While on ECMO, Cecilia did some amazing things. She would "socialize" with her nurses or us. We know she recognized Mommy and Daddy and our touch. Nurse Kitty would sing along to songs on the radio and Cecilia would follow her voice with her eyes. Cecilia would look at Mommy when she stepped up to her bed and Daddy would step up at the stool at her head. Daddy would kiss her forehead and Cecilia’s eyes would roll up and she would look at him. It was a game. She would then look back at me and then Daddy would kiss her again and she would look up at him. Occasionally she caught him before he kissed her. If one were visiting without the other, she would always look for the other. Heaven forbid if we switched places! She would give us both strange looks! Then there was her conceit; Cecilia inherited from her father. If anyone said she was cute, she would get mad! She hated that word. As soon as her Daddy corrected them and said, she is not cute, she's beautiful." Cecilia would calm down. This real satisfied look would cross her face.

We spoke with the Kidney Specialist on November 24, and she told us of the possibility of Hemophiltration after she was taken off ECMO. We also learned that they wanted to see if her kidneys could start functioning again on their own. If not, they would have to do a biopsy of the kidneys and see what was wrong. Then on November 28 after a circuit change the heater was not working and they had to do another change out that evening, Cecilia started to pee! This time her urine looked more like iced tea with too much lemon, less blood was in it. I told them when I get cold, I have to go too! The nurses all joked that this was the new treatment for kidney failure! Her flow was going down to 140! Cecilia’s chest x-rays also kept looking better and better. All the nurses kept telling us how amazing she was. How much fight she had and how there were days they that they did not think she would make it and she fooled them all! At this time she had taken over the NICU, at least in their hearts.

On November 29, Cecilia had her final closure for the silo patch. I called the NICU after getting home to check on her and Dr. Boyle answered the phone. They had not started the procedure, but he was there for when they did. "They have you answering the phones there?" I asked. "They are going to have me doing the windows next." He answered. "Do you get extra pay for that?" I joked.

She went through the final closure like a brave girl she proved to be. She also stopped urinating again! Her Daddy predicted this; I just hoped she would finally ignore the closure or that all those organs placed back where they belonged would press down on those kidneys. They also started her on Nitric Oxide to help her lungs and wean off ECMO. The final closure also caused her bleeding out to increase, at the highest she was at 30 c.c.s an hour. Nurse Sarah, who always had Cecilia on her "bad" days, asked Dr. Rogers about the bleeding, he said, "She'll stop." Sarah told me, "I guess he knows best, he's been doing this for thirty years." And he was right.

On December 4, Cecilia made medical history at UVa Hospital. She became the first baby to be placed on the type of Hemophiltration she was on. They trialed her off ECMO only twice and then decided to take her off completely, and she hung in like a champ.

That day, my stepfather, Doug, was being released after suffering a heart attack and Brian and I went first to see him. We had called the NICU and they had told us that her flow went up a little that night so they were not going to trial her off today. After visiting Doug we went to the NICU. They then told us they had trialed her off and they were considering taking her off completely.

While visiting with Cecilia, I went in to the breast pump room and Brian was still visiting. When I came out, Dr. Taylor, Dr. Rogers, Cecilia’s bedside nurse that day, Nurse Janet, ECMO Nurse Janet Pullen, and the ECMO Specialist were all there huddled in a semi circle. It was as if their minds were coming together, a collective decision was made. I had to leave and they then told us in the waiting room it was time to trial Cecilia off ECMO. This was now the scariest part. Cecilia had been on ECMO now for 32 days of her 32-day life, we prayed she would make it.

That and they were going to put her on a type of Hemophiltration that had never been done at UVa. That afternoon, she was off ECMO and taking it like the champ she was. It was so weird to see her without that huge machine beside her bed. She looked relieved! Then the time came hooking her up to the Hemophiltration machine. They used the already existing canals in her neck but with smaller tubes. This hemophiltration did not go through the belly and would not compromise her lungs as the others might. In hooking it up though, it starts pulling blood off very quickly from the patient and someone has to be there to infuse blood at the same time.

That is scary. Dr. Taylor, Cecilia and the staff did it though! The problem with the hemophiltration was keeping her body temperature up. ECMO warms the blood and blood products, the Hemophiltration pump did not. "Fine tuning" was again being done to see exactly how to work with Cecilia.

After ECMO she was so much more active. Always a social baby, on ECMO she would block the suction tube with her tongue because ALL babies hate that! When she saw Mommy she would suck on her tubes, Brian said she was thinking "LUNCH". With Daddy, she would always blow spit bubbles and stick out her tongue with him. She just became more active after ECMO. Cecilia was known for "The Fist”. When they did something she did not like or just did not want to be messed with, that little fist would rise and she made such an ugly face for such a beautiful baby. I know she smiled at me. It couldn't be gas. Lipids and other infused food do not really cause gas. She loved attention. We would come in and the nurses would say she was being a "touch me not" and we could do anything with her. We kept an eye on her stats and did not because we did not want to over stimulate her. Some nurses seemed amazed that she wouldn't mind us touching her and talking with her. Other nurses knew she knew her Mom and Dad and we were her world, as she was ours.

The whole time, we had been taking her temperature, washing her hair and combing the "bed head" out of it and I even started suctioning her mouth. It was so little to do, but it helped the staff and also allowed us to do things with her other than just watching her. Her daddy would do "Baby Calisthenics" with her to help keep her limber. She also had a physical therapist come in every morning working with her. He was very encouraged that her parents touched her so much, massaged her and helped him with his job. (It was also helping Cecilia.)During this period after ECMO, Brian and I came in and were so amazed how active she was and how she was interacting with us. She would not fall asleep. We also discovered her beautiful blue eyes had already changed to brown. They would give her Verset and she would sleep for 10 to 20 minutes and be up ready to enjoy the world around her. Brian kissed me in front of her and that was a BIG mistake. She got mad, raised her little fist and made her ugly face. Brian leaned down and kissed her and she was fine. I told everyone that "Little girls do not like sharing their Daddies."

My midwife, Claudia, later told me, "Nor do they like sharing their Moms." She also played a "blinking game" with me. This amazing little creature figured out that she could "communicate" by blinking her eyes! I looked down while Brian and I were talking with her nurse and she dramatically closed her eyes and then opened them. I looked at her and blinked too, and then she blinked back. Do not ever tell me this did not happen I have witnesses to this and I will maintain to the day I die and beyond that babies feel, communicate, hear and see.

On Thursday, December 9, 1999 Brian and I went to the hospital to see Cecilia, they were not letting us in because procedures were being done on other babies and the doctors were still making rounds. Usually they would make their rounds at 7 AM to 8 AM and later in the evening between 7 PM to 8 PM and staffwould also change their shifts at 7 AM and 7 PM. They did not want parents in there as they discussed each case and how to proceed. We waited and waited in lobby. I was getting very antsy and irritated. Her bedside nurse of the day came out and said that one of Cecilia’s IVs had to be changed, it had become blocked and there was a protein build up. They were looking for a vein for her. That IV had been used to infuse some of her meds and they were seeing if the Hemophiltration could also infuse meds. Brian and I were angry because we had called before we came to the hospital and asked on her status. Her bedside nurse had not told us of the IV problem. When I became angry with him he told us, "There are 25 other babies that we have to take care of besides yours."

That set me off! My response was: "You are her nurse today - do your JOB!"

Brian would have decked him if I had not been standing there between them. I know I frustrated him, I know there are other babies there BUT he did not seem to us to be as attentive to Cecilia as we wished him to be. (Maybe it was his nursing style, but I knew Cecilia was one of their worst cases. We had seen her with three drainage tubes in her chest draining blood; I had yet to hold her. She still was not being fed.) I told him that they would NOT get any more signatures or permission to do anything else. UVa may have physical custody of Cecilia but WE were her parents! (This was not the first time I had felt frustrated over her care, most of the time it was miscommunication or personality clashes with a nurse. I know now that they do have great nurses there. I also know that dealing with parents can be very hard for them and communication is not in everyone's ability and it does not mean that they are not good at their jobs.) And coming in between a Mom and babe is scary.

They always told you not to play with a wild bear cub for fear of the Mama Bear. We humans are just as vicious. In retrospect, those nurses deserved combat pay with me for the "Mom from Hell" episodes I had. Dr. Taylor came out and spoke to us. They were still having problems with Cecilia's Pulmonary Hypertension and that was still a concern along with her kidneys. He told us that if in a week, there was no improvement of either a decision may have to be made to let her go. He told us that if that time came, they would make it as easy on us as possible. We could stay with her as long as we wanted, have her baptized if we wished and be alone with her. We signed for a second Central Line to be placed in her. And we were able to go in to see her. I waited to collect myself. Brian went ahead. I just had this feeling come over me of despair. I do not know why and I tried to shake it out before seeing her. We only had an hour with her. She was active and focusing on us and looking all around.

Brian had to work so we went home. We discussed something neither one of us had through this turmoil. Where would we have her buried if the time came? He told me he did not want her in Harrisonburg, he wanted her here. Brian also said he did not want to loose his baby girl. I pumped and then I went back to the hospital. As I was walking through the hospital, I saw Dr. T on the phone. I stopped and spoke with him. He said he did not recognize me without my tummy. He told me he had been keeping up with Cecilia in calls to Dr. Boyle. He said he had heard the concerns were her kidneys and her lungs. He said kidneys could be fixed with transplantation. He did make me feel better. Just a friendly face, his soft-spoken assuring words were of comfort for such a frustrating day. I went up to the NICU and they were then planning to change out the Hemophiltration filter. I was again stuck out in the waiting room, getting more angry and frustrated at every minute that passed. The staff then decided to let me in.

I was there for the procedure. I stepped back while they did it and Nurse Mary Jo asked me to come over to the NICU station. We talked while they were doing the procedure. She told me that the staff was all worried about Brian and his reaction if something were to go wrong. I told her we discussed that. I also told her that Brian usually surprised people by being the most reasonable person in adverse situations. She revealed to me that she had lost two babies and that the staff there would not trade places with us in a million years. Mary Jo also said that things like these happen for a reason. Maybe it was so Brian and Rachel would have a better relationship. Maybe it was to make us appreciate life more. She also told me that the reason they keep trying with these patients is that they have seen miracles happen.

There was a 19-year-old boy who had overdosed and looked by all accounts as "Brain Dead"; one doctor there said, "No, there is a little activity there." That young man walked back into that hospital a year later. Dr. Taylor came over and appeared to be really proud of himself. "Boy, I'm getting good at that!" I went over to her bedside and Mary Jo went with me. We both noticed how tan Cecilia looked and how active she was. That is when Mary Jo also told me she thought that the "seizures" they thought she had were not seizures but her shaking her little fist episodes!

I knew I had to leave soon because Rachel was home. I kept going back to Cecilia’s bedside; I couldn’t leave for some reason. My heart was torn in two. I did not know why. I knew I could call when I got home. I knew Brian would be in later after he got off work at Midnight. So, finally I left. The drive home I cried again. At home I checked on Cecilia and I explained to Rachel our day. Before I fell asleep that evening, I prayed a different prayer. I prayed that if she wasn’t to survive to make it quick and painless. If she was, let her rebound like they had never seen before in that NICU.

Brian came home and said Cecilia was fine. They had lowered her oxygen a little and Kitty was her nurse.

At 4:23 AM the phone rang. I jumped out of bed immediately. It was Dr. Taylor. "Cecilia is not well, we think it is a hemorrhage in her chest but I haven't pulled any blood from her chest. I do not think there is anything else we can do. (There was a crack in his voice as he composed himself.) She is being bagged and we have removed her from the Hemophiltration pump. Do not rush here and get into an accident. Do you want me to use paddles if we have to keep her alive?"

"Do what you think is best." I told him. I know that was open-ended, but overall, I trusted all of UVa with Cecilia.

We got to UVa at 4:45 AM. It was normally a 20 to 30 minute drive. It seemed like it took an hour. Brian and I did not say a word, but held hands. Silent tears fell from us both. Occasionally, I did ask him to slow down. We parked in the parking garage and ran into the Emergency Room Entrance, only open entrance. I did not stop at the Security guard. I dared that little dweeb to get in my way I would have decked him. (These guys harassed the people they shouldn't and let the ones they should have free roam all over the hospital.)

Brain stopped and explained, and ran to catch up with me.We got to the seventh floor and came out of the elevators and Nurse Shannon was there. The look on her face said it all. (We did not question her because we knew she was trying to keep herself together.) Dr. Taylor came out and told us that he had pulled blood from her chest. Her stats were so low they were barely recoverable. He did not think there was anything left to do. He told us she was no longer connected to anything and was being hand bagged. He wanted us to know what we would see. He said that we would have to make the call to stop bagging her. We went in.

We stood at the doorway so Dr. Taylor could give instructions to the staff. We walked over. Saw the Stats lower than we had ever seen for her. All the staff stepped back when we approached except the Respiratory Therapist who was bagging her. We touched her little hands told her we loved her and it was okay to go and I squeezed Brian's and whispered to him, "You tell him, I’m okay now." I was letting him know that when he was ready, I was. A few moments passed and Brian told him, "You can stop."

The Respiratory Therapist looked over at him almost surprised that Brian made the call. Brian said it, but I was there and it was a decision we made together.

Nurse Kitty stepped up and said, "Little Cecilia made this easy for you." We were instructed to go to THE room, always bad news room. "She will be in your arms." Kitty said. I told them of her pink blanket. We were crying and managed to walk to the room. Dr. Taylor brought her to us in her pink blanket and put that warm bundle in my arms.

The Chaplain who was there came in the room and we had her baptized. I handed her over to Brian. We both told her it was okay to go and we would always love her. Nurse Kitty came in and said, "Oh little Cecilia." So many things were spoken to her. Dr. Taylor came in as Brian was holding her and checked her heartbeat. He said, "I don't hear anything." She passed away in OUR arms. Brian handed her back to me and Kitty came into the room to get hair clippings and to take her footprints. It was the first time we saw her in a diaper.

Nurse Tracy Adams came in the room. She had been off and was called. (She had left word with them if anything ever happened to call her. She fell in love with Cecilia despite the professional line. I am sure others did too. That is what made them all so good.) "Oh, you guys, she said and we knew exactly in those three words how she felt and the meaning. (Tracy had been caught by Brian giving Cecilia kisses.)

Tracy commented on Cecilia's perfect nose, and how she wished she had a nose like that. Dr. Taylor said he could help her with that. We had to laugh.

Brian then said, "I hope Saint Peter did not give her a hard time when she got to the pearly gates."

"If he did, Cecilia kicked him in the shin and ran past him." Dr. Taylor replied.

We managed to laugh. In one statement, that was Cecilia. She was taken to be weighed and measured and brought back. We were asked if we wanted an autopsy, we said no. Dr. Taylor said he understood he had to ask and that we all are positive of what caused it.

The way they all guided us through letting her go, was amazing. They directed and we just acted as her parents. They knew exactly what to say, when to say it, when to leave us alone with her and when to join us. We finally left her there to go home to Rachel and the numbness that overtook us both. We walked out of the NICU and hugged Shannon, Kitty and Tracy and thanked them all. The NICU was somber. That is the best word to describe the feeling there.

As soon as we got home Rachel was on the phone and I told her. She cried and as I hugged her pushed me away only I did not let her. I told her she did not have to go to school, but she insisted. I think she needed her friends and not to be in a house where people were crying and upset.

I called my mother and Doug answered. I told him Cecilia had passed away.

"I'm so sorry, Elizabeth. I'll get your Mom." Mom said she would be right over.

Brian called his parents and had to shout over the phone. They said they were coming over.

My Mom came. As soon as she walked into the Kitchen door, I can’t imagine what you sweeties are going through.” And she hugged me. She then hugged Brian. Mom gives the biggest hardest hugs of anyone I know it stays with you.

“You have made both your grandmothers very happy, they both loved little babies!” she told me.

She also explained that many people were going to say stupid things right now. Take it like a grain of salt. They know not what they say. They have no clue but they will try to project their own experiences on us. That is so true! It was the best advice we ever received through the whole thing. She also told us to do the funeral arrangements together. It was something we should do and no one else.

After she left, Brian’s sister, Kate, came. While Kate was there I called Hill & Wood Funeral Home and made an appointment for us after answering the questions they needed to know.

I tried calling my sister. I realized that she wasn’t at home. My niece Natalie was having tubes put in her ears for the second time that morning. I called my brother-in-law, Mike. I told him and he said he couldn’t imagine what we are going through and that the way we have handled the whole thing was amazing. What no one knows is we will handle her life and death for as long as we both live.

Brian’s parents came over. They wanted an open casket for the funeral. Brian told them we were considering that but we would plan it ourselves. If they felt put off by that we were sorry but we had to decide that ourselves. Her funeral was the LAST thing we could do for her as her parents. They went into the living room and I got on-line to peck out my message to an on-line support group I belonged to, I cried through it all. I had been keeping them updated on Cecilia's condition through the rollercoaster ride. (They had encouraged me with their emails of support.) When I came to the end and had to type her death date, I froze. Then I did it, 12/10/99. How I wished I did not have to.

After Brian's parents left, Brian called and left a message for Jennifer Boner. She called back later and spoke with Brian. She gave us her home number and told us that she would like to know when the service was, if she could come. I spoke with Anne and she was devastated.

We went to Hill & Wood Funeral Home and were prepared to sign our lives away on the expense. That is when Donny Lamb told us they did not charge for an infant. He said it would be immoral and unethical. He also told us that there were "Baby Lands" at two Cemeteries in Albemarle County. All we had to pay for was the flowers and death certificate. We chose a spray with lots of color for her casket.

Donny Lamb also told us that as dark as Cecilia was she would just get darker and people tended to stare at babies at a funeral. We chose to have a closed casket. The little casket was no bigger than a bassinet. Cecilia was already there. We were able to see her again. She was dressed in a T-shirt and had a knit hat. We brought an outfit that Frances Armentrout had given us for her. It was Ivory with lace and little panties that matched. She looked so beautiful in her outfit. We chose to have her buried at Monticello Memory Gardens on Monticello Mountain. Monticello Memory Gardens is a beautiful cemetery that looks over the city of Charlottesville and the University of Virginia Medical Center. Her funeral would take place on Monday, December 13, 1999 at 2:00 PM. Reverend H. Donald Hawks, who married us, would officiate and interment would follow at Monticello Memory Gardens.

In her casket we put the picture of Mommy and Daddy on their wedding day that had been in the NICU for her to see, her stuffed soft bear that had "rocks in its head" I had bought her at the hospital gift shop. (Nurse Donna gave me that description of that bear. I responded, "Just like her Daddy." Her Daddy's brass Eagle Globe and Anchor Emblem from the United States Marine Corps was also placed inside with her. We know she fought harder than any Marine had ever fought in all the years of boot camp and in all the years of war or conflict and with more courage.

Her funeral was attended by our families our friends and extended family. Nurse Tracy Adams also attended. It rained. It rained on the day she was born, every bad day she had, the day she died and now on the day of her funeral. Rev. Hawks read the poem her Daddy had written for her on December 9. I read God's Loan. How I got through that I don't know. (Some say I had nerves of steel. They didn't realize that I was so numb and practically cried out. I did that for her.)

Tracy and I both agreed that Cecilia was not a pink, but purple. We then drove up to Monticello and every last word of the 23rd Psalm was spoken by all. I didn’t want to leave her. I couldn't believe we were leaving our baby. For such a short life, a little baby she had so many there to remember her and many had never met her but knew of her life.

The aftermath is the hardest part. Brian and I were angry but we didn’t know who or what to be angry at. Then we realized that we could only be mad at Congenital Diaphragmatic Hernia - the disease. Oh, sometimes with one another we were angry at the stupid things people had said and still say. We bounce that back and forth between one another. And we still are. We love talking about her. Remembering the things she did that made her Cecilia to us. We can picture her as a child causing chaos and being a spitfire. She would have grown up to be one of those little girls who would have made little boys do things for her.

She would have been one of those that would be in trouble but been able to bat her big brown eyes at the teacher, or her daddy and melted them. Manipulative and beautiful a dangerous combination. Now she is in heaven and probably has everyone wrapped around her little finger as she does exactly what she wants. And now we realize that Cecilia Winn Propst always had wings, we mere mortals just never could see them.

I wrote this to memorialize Cecilia and as therapy for me. We plan on helping any parent who needs it who calls, emails, or we are in touch with through the University of Virginia. We feel that is the best way to remember her. If you managed to get through this story, thank you. I have shared my heart. I will never be the same person, nor will Brian. We hope we will be better people. We never want anyone to go through this and wish that Congenital Diaphragmatic Hernia ended with Cecilia’s case and her life. (Along with any infant death.)

We know that is not the case. Her life was not in vain. It was not useless. Brian and I found out many things. We made a beautiful baby, we loved her with all our hearts and she taught the University of Virginia and us and maybe many others. We also now know that no one should judge us for how we handle our grief, and we do not judge others. Some say my memorializing Cecilia is obsessive. I have ignored them. They never lost a child. They have no idea of the pain. As for "getting over" our grief not possible, you must go through it at your own pace and in your own way.We feel closer to God because he has our daughter. We feel blessed to have met all the doctors, nurses and medical professionals we came in contact with through Cecilia’s life. Every last individual who assisted in even small ways we admire. How could we not? It seems like some divine source took over our lives in July and from that point on we were in touch with the best of the best. We know that the best people, the best doctors and nurses and the chosen ones to help us all.

1 comment:

Misty said...

Elizabeth! thank you for sharing your little one's story! she is an angel and you are one tough mama! i admire all that you do day to day to help CDH families everywhere!