Mara's Story

I was so excited to go into Bromenn to be induced. Quite frankly and honestly, I was getting tired of being pregnant, achy and dealing with an annoying cough for the previous 10 weeks. Sounds awful, doesn't it?? I went in at midnight, didn't get much rest and was started on Pitocin somewhere between 8 and 9 in the morning. One time I remember by heart is that my water broke at 9:50 and I thought that surely things would progrss quickly from there. Boy was I wrong! I spent the entire day very slowly dilating and finally getting stuck at 6cm and going nowhere fast. Finally, my doctor decided to do an ultrasound to check the baby's position and it was discovered that her head was facing the wrong direction and that I was going to need a C-Section. Everything went pretty fast from there. Dan was placed in his scrubs. I got to wear my wonderful scrub hat and I was wheeled into the operating room. The increase in Epidural medication wasn't completely numbing me so they gave me something stronger in my IV, which made me quite sleepy and the room quite dizzy. Our beautiful daughter, Mara Christine Bree, was born on November 8th, 10:47p.m. She weighed 7lbs 6oz and was 20 inches long. I do remember hearing Mara cry, but I don't remember being concerned that she had stopped crying. I so desperately wanted to see her and was trying to encourage Dan to take pictures. Dan looked like he was in limbo between Mara's bedside and mine. I finally got up the courage to ask him if something was wrong. He looked at me and said with a worried look on his face that she had 6 fingers. They wrapped her up, let me snuggle her cheek to cheek, allowed us a few quick photos and whisked her and Dan away from me. My doctor leaned over the blue cloth and told me not to worry...that this can happen often. Little did I know that my level of worry had only just begun. The nex thing I remember is being in recovery and everyone talking about Trisomy 13, life expectany not over 1 year and all of the "defects" our perfect little Mara had. I'm sure it was partly because of the medication, but I couldn't stop shaking. What did all of this mean?

Trying to remember the events of late November 8th into the 9th can become such a blur. I remember both the OB and the Pediatrician coming to Dan and I and talking to us about what they suspected was going on with Mara. Trisomy 13? I had NEVER heard of this prior to that evening. Trisomy 13 syndrome is a disorder of human chromosomes which occurs in 1 in 10,000 live born infants. Trisomy 13 is due to the presence of an extra #13 chromosome. Approximately 80% of infants with Trisomy 13 syndrome will have a full trisomy while the remainder will have a trisomy due to a rearrangement called a translocation or have mosaicism (two different cell lines). According to our Geneticist, sweet Mara had a full trisomy. We are still waiting (hopefully 2 more weeks) for the full panal of testing to be completed. Infants born with Trisomy 13 have a recognizable pattern of physical features that often allow the health professional to make the diagnosis of the syndrome. In Mara's case, she had skin defects on her scalp, a cleft palate (which was only noticable by looking inside her mouth), 2 holes in her heart (one which is normally occurring in infants and closes with development, but Mara's was large, and she had an additional hole), enlarged heart with a murmur, and extra vein in the side of her neck, cysts on her kidneys, an extra digit (without bones) on each hand, lower set ears, abnormally shaped heals (they called it the rocker bottom foot appearance), difficulties breathing due to interrupted breathing (apnea), problems of lung development and feeding/aspiration problems. My poor angel struggled the most with her breathing. She constantly suffered from secretions that made it so very difficult for her to breathe. Mara was such a little fighter, but it was her struggle to breathe that took her away from us and placed her safely in the arms of Jesus. I'm sure there are many other problems that the doctors identified, but these are the ones that were the most described to us. Sometimes I find myself wanting more answers and at others I just want to let her rest and focus on what was so very right and perfect about our baby girl. Mara captured my heart from the moment I saw her. Her quick cry after birth filled my heart with so much love for her that it's the reason I still cry each and every day because I can't stop missing her. Her sweet kissable cheecks that so reminded me of her dad's and her sister's. The way she seemed so comforted by laying on my chest those days in the NICU. The strength she showed on Friday the 12th to allow so many members of our family to meet her before she passed away. She had been struggling so very hard that morning, but stabalized during the afternoon. I think she knew mommy and daddy really needed this. Dan and I remain firm in our belief that even though doctors found so much "wrong" with her medically...we were given, for far to short of a time, the most perfect baby girl.

While Mara's baptism was being performed, the transport team from St. Francis/Children's Hospital of Illinois was being life-flighted to pick up our baby girl. The way the nurses were taking pictures of every little thing made me feel like Mara may not even make it through the night. How could this be happening? After her baptism, I was taken back to recovery and Dan and I had even more information given to us. Needless to say, it was more than overwhelming. I desperately asked if I would be able to see her again before they took her and they promised we could. When they brought her in, she was in a travel isolette with so much attached to her little body that I broke down yet again. She was laying on her belly and seemed to be comfortable. I later found out that even though the team was life-flighted to pick her up, she was able to take an ambulance ride back since she was stable...the transport nurse said she slept peacefully the whole ride over. Dan drove to the hospital to be with our daughter. I know it was a hard decision for him, but we both knew it was where he needed to be. He spent the whole rest of the night sitting on a stool next to Mara's isolette trying to comfort her in any way he possibly could. What an amazing daddy! If I remember correctly, it was around 2am when she left and I was taken to the mother-baby unit. My wonderful sister, Kim, never left my side. I stared at the clock on the wall the rest of that evening...thinking I might have fallen asleep, but only to realize that no more than 15 minutes had passed. Throughout Tuesday, the nurses said that I could be discharged and go be with Mara if I could prove that I could get out of bed and walk a little bit. The pain was excruciating, but how could I not keep trying? Typically, I wouldn't have been discharged until Thursday for a normal C-Section delivery. I had so many wonderful visitors during that day. My phone calls/texts with Dan made my heart ache even more to get to my daughter. That evening I got a phone call from my doctor saying that St. Francis had made arrangements for me to be transported there so I could be with our daughter. Before the transport team arrived, I got a phone call from Dan saying that the reports/tests coming back were not good. In fact, they were beyond awful. I completely lost it! The ride to St. Francis didn't seem long, but I felt every bump along the way. When I arrived, the admission process seemed to take FOREVER, but I was eternally grateful that they were willing to take over my post-delivery care when I had not been a patient of theirs.

When I finally got over to the NICU on Tuesday night, I was both relieved and saddened at the same time. Mara seemed comfortable, but everything surrounding and attached to her scared me greatly. I'll never forget the relentless beeping of those monitors if her Oxygen levels dropped or if one of her leads had come undone. I wasn't able to hold her that evening because she was still under the Oxygen helmet. We spent our time letting her know that we were there with her (both mommy and daddy) and that her big sister Olivia couldn't wait to meet her as well. Dan and I were able to get a little sleep on and off Tuesday night and we were right back at her side on Wednesday morning. The NICU is a brand new facility (only recently opened this past Aug or Sept) and state of the art. The only problem was that it was in a completely different building...but connected by long hallways/walkways. My amazing husband wheeled me back and forth throughout the day so that I could see my doctor as well and get my medication. Wednesday probably was Mara's best day. Her Oxygen levels had greatly improved and she was able to have the helmet off. Dan and I spent as much time as we possibly could taking turns holding her in a chair next to her isolette. AND her big sister was able to come meet her! Olivia could only stay for 30 minutes and had to wear a mask, but there was just something heart warming to have our whole family together in one room. Throughout our time with her, Dan and I read books to her (some of Olivia's favorites from when she was younger), sang to her (she really seemed comforted by "This little light of mine") and kissed her sweet cheeks over and over again. I also want to take the time to mention that Mara was showered with so much love from her extended family and friends during her stay in the NICU. Dan I both firmly agree that Mara was the most stable and content when she had visitors in her room. Even though our stay in the hospital was short, we came to dread/fear when the team of doctors were in her room doing rounds. We understood that it was their responsibility to keep us informed of Mara's medical issues, but when the news isn't good, or even hopeful, no one wants to sit through that kind of discussion. They were asking us to start thinking about major decisions like the possibility of going home with or without a feeding tube and do not resuscitate oders. I cry even now thinking about those decisions that NO parent shoud EVER have to make! Dan and I went back to my room and tried to make sense of what they were asking us to decide. We knew we would have to make these tough decisions at some point, but we had no idea just how soon that was going to be.

I'm so glad (if that's the right word) that I'm putting Mara's story into writing because even as I'm writing this now certain events and memories are starting to blur together. Thank goodness Dan has a far better memory than I do. Thursday was an ok day for Mara. She did develop Jaundice and had to spend time under the bilirubin lights, but it wasn't bad enough that the nurses wouldn't still let us hold her. She just had one more thing attached to her, the bilirubin blanket. That day a feeding specialist was teaching us how to use special bottles for Mara to make feeding easier for her due to the cleft palate. The specialist did much better than mommy and daddy, but she did take 3 small bottles that day (two of which included mommy's milk). Later we discovered that her digestive system appeared to be functioning normally. Thursday was another day of showering our little miracle with love. We didn't have as many visitors as the day before, so were able to really focus our attention on Mara. The wonderful nurses at the Children's Hospital went out of their way to make us still feel like mommy and daddy. We got to help dress her, take her temp., change her diaper and feed her. I don't thnk I'd ever been so excited to change a diaper in my life! We had our favorite nurse, Missy, with Mara on Thursday night and we felt some peace and attempted to get some off and on rest again. I do have to mention that it was on Thursday that Dan met with the geneticist and recieved the report that Mara did indeed have full Trisomy 13. We most certainly prayed for this not to be the case, but we knew in our hearts that it was true. Early Friday morning Dan and I were getting ready to go see Mara when a nurse from where I was staying flew open the door and said that the NICU needed to see us now! Dan was still getting dressed, so he yelled at me to just go and the nurse pushed me in the wheelchair the long trek there. Dan got to Mara's room just shortly after I did and we were told that she had to be bagged three times and that they had to do chest compressions the third time. She was becoming stable again, but they knew we needed to be there. We refused to leave her side. The doctor from the mother unit came all the way over to the NICU to examine my incision site and discharge me. My wonderful sister packed up my room. We quickly took turns that morning getting changed into nicer clothes because the hospital helped us arrange for "Medical Photography" to come and take professional photos of Mara and our family. Looking back, I know this will always be one of the blessings I cherish the most. Mara remained stable the majority of that whole day, even with people taking turns holding her. I can't imagine that she received any less than a million kisses that day! When our family had gone for the evening, we settled in for a little mommy/daddy time before some friends were due to arrive later that evening. It was during this time that Mara was again really struggling with her breathing. Earlier in the day during rounds with her doctors we had verbally given the Do Not Resuscitate orders and we were terrified. I don't know how to word this delicately, but we had to give her small shakes to remind her to breathe. When our friends arrived we were worried that it might not be the best time for them to visit, but yet again Mara knew how important it was to mommy and daddy to have them meet her.

After our friends had left on Friday evening, Mara was resting in her isolette and I was encouraged to try to get some rest. I went to our Family Suite (which was attached to the NICU) and within 15 minutes Dan came running in saying that I needed to come now. I was in shock...things seriously couldn't have gotten that drastic in 15 minutes, but sweet Mara was again fighting to breathe. No amount of increased Oxygen was helping. We screamed. We cried. We begged. We knew what Mara was telling us, but how could we do this? At one point Dan told her no and she gasped for air. I then told Dan that we have to stop telling her no...we can't let her suffer in this way. I am sobbing as I'm writing these memories down and I can only imagine how they must be for others to read, but I have to do this. Our nurse told us what choices we needed to make and our faith was guiding us. I once read that our beliefs and our faith guide us to make decisions when we are overcome with doubt and fear. That's the only way I can possibly describe how we decided to let our Mara go. She wa given medication so that she would not be feeling any pain. Mara then peacefully took her last breath in her daddy's arms and her gentle heart took it's last beats in mine. Mara went to be with Jesus on November 13th at 12:13a.m. We held our daughter knowing that this would be the last time to feel this embrace. There are no words to describe or attempt to comprehend the events of that evening. While talking to the Pastor at our side I knew Mara was now at peace because she allowed me the ability to take my first deep breath since her birth. We cherish the days we were given with our daugther. She will forever be a part of our family. She has changed who we are and who we are to become.