Come on time, move your ass.
Friday, June 26, 2009
I have never been the kind to wish away time. Granted, there have been times when I was looking forward with anticipation to a time in the future, graduation, the birth of my girls, Mondays when I have my therapy appointment. But never wishing time to just pass, just GO! It's sad that I am there right now. I want to fast forward to at least August, preferably December. I just want to be able to reflect and feel the edges of grief softer, easier, rounder than before, softer than now. I want to be at a place and time where we talk about trying again and I don't have butterflies in my stomach.
Posted by These kids' mama at 3:12 PM
Monday, June 22, 2009
Four months ago today Sage was released from the confines of her motionless body. Her heart reborn into a little boy and liver into a little girl. It seems only fitting that yesterday was Father's day. I thought of those two fathers looking at their children and I pray that they kissed them an extra kiss just for almost not being able to. My dear husband got a necklace with Sage's name inscribed on it, no baby sweet kisses for him. Watching him cuddle with our older daughter on the couch almost brought me to tears... he is a great dad. I know that had Sage been here for us he would be cuddled with her on his chest and Iris on his lap. All three comfy on the couch...the way it should be. The way it will be someday.
Posted by These kids' mama at 12:44 PM
Thursday, June 18, 2009
The last couple weeks have been really hard...not sure if it is because we are hitting the 4 month mark and reality os really setting in or what. Maybe it's being way too busy at work, maybe it's stress from being a student, maybe it's just what it is. Whatever the reason, I am more fragile, more irritated, more...well, more everything. I started thinking about taking Sage's name off her door. Maybe it's time...maybe not. Maybe next week.
Posted by These kids' mama at 7:28 PM
Tuesday, June 16, 2009
Sage was getting the charcoal and we realized our time was running out with her here. We called the pastor (we are not necessarily religious people but welcome anyone sending positive healing energy our way) and family. We went home that morning to prepare for our gathering that evening. We looked in Sage's closet to find a dress for her baptism. I had the choice between a cute white little dress and an equally cute but larger green and white gingham dress with white daisies on the waist. When we held them up, standing in tears in her room, we couldn't image her fitting in the tiny white frilling frock. She just seemed so huge in the NICU. When we got the NICU she was actually undergoing echocardiogram testing and we had to wait. We finally got to go and dress her in the first and last dress she would ever wear. It was HUGE on her!! Because she was roomed next to tiny 1 lb babies, her 6lb 14oz body dwarfed them and made her seem so much bigger. We all gathered around her, blessed her, and were blessed by her. We all felt her presence around us, content to be joined with something bigger than us once more.
The charcoal worked. In one night Sage's levels were below the required levels, she was at 12! The donation process was back on track. We were so excite we could hardly contain ourselves. It is kind of morbid when we reflect on it, excited because our daughter would die sooner? It is really odd how we shift our focus when we have a goal that looks different from what we initially plan on. That morning, Saturday, we called Now I Lay Me Down To Sleep to make our apt. for the photographer to come take our family portraits that evening. That night would be our last night with Sage as a family. Her tests were all being completed and she was being run through the donor registry for a match. She was scheduled for her surgery in the morning.
We brought her post-surgery outfit and prepared ourselves. The photographer came and it was an amazingly beautiful experience. She posed Sage and took hundreds of shots. The nurse even got into the experience, posing, directing, and enjoying the time as much as we were. I told her she has missed her calling and had a second career all lined up. She also helped put together the memory box, remade numerous foot and hand prints, and made a foot print imprint on clay. We also took a lock of hair. The most beautiful lock of hair ever.
Late that night our time was over. It was time to take our older daughter home and get ready for the next day. With our bags of "parting gifts" from the hospital we hugged the wonderful nurses and the amazing organ donation nurse. It was the hardest walk out of the NICU we ever had, we knew we were never coming back...at least not for Sage. The thing that will stay with me is the looks we got, some looking with sympathy and apparent hurt, some looking with disbelief, and others not able to look at all towards the shattered couple cradling a teddybear and a backpack of their dead baby's clothes. Clothes that smelled like her, like betadine and pampers. Clothes I still press to my face hoping to catch a faint whisper of her skin. It is fading fast and I can't burn it into my memory enough. Yet, I digress.
We were told that surgery could take place from anytime between 2 am until late the next day but hopefully after 6 am. That night neither of us could sleep. We held eachother and cried, much like we had every other night since Sage had been born, 4 days before. We received a series of phone calls telling us that it would be a little longer to start the surgery, a few more hours, just hold on a bit longer. The phone rang and we got the best news we had received during the entire time. Sage had been matched with a baby boy who needed a heart and a little girl who would be dead without a new liver in 48 hrs. Sage was a perfect match for both. Her surgery would take place take place around 10am, unless they get bumped by a trauma. Of course, we did get bumped.
My mother and I wanted to go see Sage after the surgery, something that we were informed wasn't normally asked for. My dear husband wanted to but didn't want to remember her as being cold and pale. I was hesitant about that as well but didn't want to miss the opportunity to at least see our daughter without tubes and wires. I had to hold her at least once without worrying that she would crash. The nurse called and said that we could come at 2 pm to see Sage. We walked into the lobby and the OPO nurse came out to meet us and bring us back to the OR. They had set up the physician charting room just for us.
(When we walked through the OR doors my dad's cousin was there to greet us with a big warm hug. She is intimately involved in this for reasons other than family ties. She had a 6 week old daughter who died waiting for a heart. She also happened to be on staff at the hospital where all this took place. She just couldn't stay away, she had to be there for Sage, she had to let Sage know she had someone who loved her there in the OR with her. I can't begin to say how much that meant to us and our family. )
We were led into the small room just off the OR and in a small isolette was my daughter. I couldn't look at first, not wanting to see a blue or discolored rendition of my once pink little girl. My mom peeked in and said, "it's ok, she looks beautiful". She did. She was dressed in her outfit we brought, wrapped in her blanket with her signature pink hat. They had placed her in a warmer and she still had a bit of pink in her. I just wanted to hold her and snuggle her. It was heaven finally holding her close like that. It was everything and more. I finally let her go to my mom who snuggled and talked to her. Slowly she started to lose her color and warmth. I didn't want to have memories of her blue anywhere in my mind. It is a cruel tradeoff. I finally said it was time. The nurse from NICU and the OPO nurse had bought Sage a bear and a bunch of daisies. They gave it to us and we made our way out. That was the last time I saw my daughter. As long as that week felt, I realized there never is enough time.
Posted by These kids' mama at 5:39 PM
Monday, June 15, 2009
The day I was discharged I wanted to run, fly, teleport over to the hospital Sage was at. My husband instead sent me to bed. I was in bad shape physically and honestly, he was looking out for me. All I could think about was my baby alone in a strange place. I had an idea what the prognosis was but hadn't seen it for myself. I held on to that little glimmer of hope. After calling the NICU nurses a few times and a small nap we made the trip. I remember seeing her for the first time in the isolette, so small and hooked to an EEG cap. I looked at the EEG monitor and knew what the reality was. Here was my darling little girl, pink, plump, and perfectly sleeping. Her monitor lines were flat....no activity. A neonatologist I had never met came over to say "there is no brain activity", and walked away. I wasn't sure if I wanted to be horrified or thankful for the blunt news.
Honestly, I can't remember if it was that night or the next day that we looked at eachother and knew we had to ask for organ donation and hospice. I asked our nurse Linda to make those arrangements. She said she wasn't exactly sure how that all would work but would certainly do her best. This was our first glimpse into our week long journey to help Sage fulfill her purpose. That was Tuesday. Wednesday we met with the first coordinator from our local organ procurement organization. They were wonderful and supportive. The nurses also were quickly becoming family. They dressed Sage and encouraged us to spend as much time with her as possible. It meant so much to hear them talk to her and call her by name even though we all knew she was gone.
We had some concern that her organs weren't going to be viable. Her kidneys were not producing urine the way we would have liked and her liver was very sluggish. We decided to have a little talk with her. We told her that she needed to pick it up if she wanted her plan to work out. We needed a little time and she needed to give it to us. She did. Within a day she had fully picked up her kidney and liver function. The only thing to get more "touchy" was her respiratory status. Maybe it was tube placement, maybe it was her not wanting us to hold her too much, but whenever we held her too much she would decompensate quickly. I became the overprotective mom...with a slightly different goal.
Things started to fall into place for donation when we were hit with a bombshell. We were told that the hospital and OPO had conflicting views about how to declare brain death. Did we ever think that we would be upset that they couldn't declare our daughter brian dead....no, but we did now. Finally after another day of the physicians researching what could be and should be done to declare, we were told that the problem was the massive amount of Phenobarbital Sage had been given right after birth. Due to her age and size of liver, the drug was just not clearing her system fast enough. We were told that her level had to be sub-therapeutic to make the declaration (15mg) and she was at 27mg. approximately 2 weeks to get down. We didn't have that much time. Donation was on hold, possibly cancelled completely.
I was at home the afternoon my mom called me. She said, "there has to be a way to get it down faster. There has to be a drug they can give to clear it out. This HAS to happen." I told her to give me a minute. Divine intention was at work in my computer that day. The first result page that I came to gave up a study done here in Florida at Shands hospital. Neonatologists had given activated charcoal to severely brain damaged neonates to clear nothing other than Phenobarbital from their livers to do nothing other than declare brain death. Mind you, this study was done in 1990. So almost 20 years ago researchers figured out a way to do what we needed to do but nobody knew about it. I called my mother almost bouncing out of my seat. I told her the name of the article, researchers, and journal it was located in. She went to the neonatologist on duty and basically begged her to read the study. She called me about an hour later in tears saying that the physician read the study and had ordered the first dose of charcoal. We were on our way.
Posted by These kids' mama at 6:24 PM
Friday, June 12, 2009
Feb. 9th was supposed to be "the" day. The day my second daughter (our first together) was due to be born. After 2 years of sincere planning and trying we were finally going to have our baby. All the conditions were right; marriage, house, job, we were ready. The pregnancy was hard, harder than the first for sure. I chalked it up to being almost a decade older and much busier. "Morning sickness" lasted most of the day every day up until delivery. Kidney stones landed me in the hospital because they caused contractions. I also had symphysis pubis dysfunction. This is where the cartilage between the pubic symphysis split prematurely. This makes it very painful to walk because your pelvis is basically in two pieces carrying an increasingly large baby. In other words, I was really really looking forward to having this baby. The room was done, the shower had, classes taken. We decided to call our daughter Sage Elizabeth.
Feb. 9th came and went...no Sage. We waited and walked, and did much of all the old wive's tales trying to encourage Sage to come on out. One week later we reported for a biophysical profile to make sure everything was still okay. She was sleepy and not responding the way that the technicians wanted so they called the midwife. I explained that A. the medication I took to battle the "morning" sickness made both Sage and I very sleepy in the morning and B. we were hungry!! We went to eat lunch and went back a couple hours later. The second scan was perfect, she moved, breathed, and was very snug down low. So low that they really couldn't see the top of her head. So low they couldn't see the cord right by her face. The midwife was called, we were cleared, and we stopped by her office on the way home. Joy of joys, we were dilated already! We went home and I got the feeling that maybe I should take a nap.
I should probably explain at this point that this was a planned home-birth. I had my first one at home and as a nurse I see first hand the mechanization that has become birthing in the hospital setting. Some places embrace natural birthing in hospitals but definitely, definitely, not here. For that reason I chose the home-birth option. I don't regret that choice as what happened next would have had the same outcome anywhere we had chosen to deliver.
I awoke around 5pm to my water releasing and steam train contractions. The midwife and assistant arrived quickly and assessed that I was 6 cm dilated. Everything was going great. I labored in the shower, on the toilet, in the birthing pool. About 3 hours later I felt like I needed to push. Sage was doing great, heart rate within normal limits and was responding great to labor. I could feel her head with every contraction. I could also feel a cervical lip. I remembered that with my first daughter I had what is called an "anterior cervical lip" hung up. I tried to push it back over the head with the next contraction and felt Sage come down further. Again, her heart rate was perfect. I felt another big contraction come and pushed.
I could feel something shift, something wasn't right. I told the midwife, "something is different". She looked at my face and checked. I saw a flicker of panic as she yelled to my husband to call 911, "tell them prolapsed cord". She threw me out of the pool and on to my chest. Immediately she was pushing Sage's head off her cord. This meant pushing into me to get her head. I remember yells to push hard and not being able to get a grip on anything. I was sliding into the wall. EMS got there in 3 minutes, loaded us into the ambulance as one unit, and took off. The birth was a blur...OR room, mom up against the wall in a mask, midwife, still attached to me in a mask, and an anesthesiologist trying to press a mask to my face which had no air flow. Sage was born vaginally with suction. She was ripped from me and thrown on the warmer table. I watched as they resuscitated her still pink body. I heard someone say that they got a heartbeat back and then I heard the OB say to give Versed. Sage entered this world at 816pm.
I next remember waking up in the regular patient room. I felt so empty...in shock. We all just sat there wondering what would happen next, would she live, and if she did what would be her quality of life. Someone said, "there might only be a one percent brain function". I remember answering, "we'll take it". Around midnight we were told she needed to be transfered to another hospital with a Level 3 NICU, they were just waiting to see which one. It all came down to her ABG. We prayed for the closer one. We were granted that luxury when she improved slightly. I got to see her for a moment as the flight crew wheeled her into my room on the way out to the waiting helicopter. She was on the vent and still seizing, just her right foot, just a little. I learned later that she had major posturing and seized almost immediately after birth. It was an ominous clue.
My dear husband and mother went to the hospital to see Sage, it could be the only time. My midwife stayed by my side. We cried, sat in silence, talked a little about how I never really felt connected to Sage. The neonatologist came in when my family returned and said the kindest thing anyone could have said in that situation. He said, "I am number 8 out of 10 children all safely delivered at home". My worries of judgement were washed away, at least with him. He was honest, as was the physician at the other hospital where Sage had gone. They didn't paint a rosy picture, but did allow for some hope. The OB was also as comforting as he could be. His way was to say that he has, "lost quite a few babies in his time". I guess I couldn't really ask for more. He is a product of his education...who can blame him. He sees the worst of the worst, me included. I was discharged early the next morning...they didn't want me to miss the opportunity to say goodbye to my baby girl.
Posted by These kids' mama at 2:08 PM
This blog is about grief. It's about loss. It is about making my way through this crazy, dark, vortex which is the loss of a child. People say that grief is work, hard work. They are right. Working with my grief is the hardest work I have ever done. There is one ray of light in our journey through darkness, we were able to donate our child's organs to 2 other children. It has been a source of hope, a source of meaning, but it still hurts like hell.