Our Final Day With Beckett

The day before the funeral, my husband and I visited the funeral home to check on Beckett. We had to approve her clothing, the setup, her makeup, etc. I was nervous from the moment we stepped into the front door. As soon as we entered the sanctuary, I saw the coffin. I know my mouth must've been gaping open and I had to look horrified, and that's exactly how I was feeling. I was horrified. The baby I delivered just a few days before was now lying alone in a tiny box. I was shaking, gripping Phillip for dear life and I had to just stare at her for a moment. The coffin was white, lined with a pink inlay. Beckett was in her yellow duckie outfit and swaddled in the yellow blanket Auntie Cindy made.

Her skin was an even tone, much different than the purplish-grey colour she was in the hospital. Felicia had done a wonderful job with her makeup, making sure she didn't look bruised or cold. Her little lip was a precious pink colour. I touched her head and flinched; she was frigid. For a long time, we just stood there and looked. Felicia offered to move the coffin to one of the pews so we could sit with her, and that's exactly what we did. Phillip sat on one side, I on the other, and we quietly inspected her. I moved the blanket so I could see her limbs. Her feet were high in the legs of her outfit - she was too small even for the preemie clothing we bought for her. Being only 3 pounds, her arms were also too small and the shirt seemed to swallow her. I pulled the collar down and imeediately regreted it.. the skin on her chest was gray and splotchy, reminding me that my little girl was not just sleeping. I tried to ignore it. I petted her hands and held her tiny fingers. Not an inch of her was stiff and I was grateful to be able to touch her spongy cheeks and maleable arms. We cried for a while and I layed over her. I wanted so badly to cuddle her and try to warm her up, but I couldn't bring myself to hold her that day. Felicia returned her to the viewing table, being extra careful with the coffin, and we ended the visit by approving the program layout and ironing out the extra details of the service.

That night, Phillip had a particularly bad argument with a family member over who was coming to the funeral and who was not. Sickened by grief and angered by the people meant to support him, he had a few too many drinks. We both sat crying in the bathroom together, talking about family.. Beckett... the service... what life was going to be like after.. all sorts of depressing subjects. I understood exactly why he was drinking, but it made him terribly ill. The argument was soon smoothed over, but by then we were miserable wrecks. With the help of my macguyver like brother and my compassionate mom, we managed to barrel through the bile-inducing, cry fest of a night.

The morning of the funeral, Phillip had a terrible hangover, and I was a nervous mess. We arrived before the funeral home was even open. We sat for a while on the couch in the entryway, muttering about sick stomaches and fidgeting hands. When we forced ourselves into the sanctuary, it wasn't scary like it had been the day before. Beckett looked peaceful, snuggled and leaning into the blankie as if she knew it was soft. Again, Felicia moved her to a pew for us so we could spend a little time with her before the crowd began to arrive. This time, I decided to hold her, and I'm thankful that I did. I picked her up, held her to my chest and stared at her. I was crying, but only a little. I traced the line of her mouth, poked at her tiny, malformed nose and rubbed my thumb over her eyebrows. I played with her hair, brushing it this way and that. I held her hand, rubbed her blanket against her cheek and finally kissed her. We put her back in her coffin, replaced her on the viewing podium and finally greeted the visitors.

We learned that Felicia had not only purchased a guestbook for the service, but also a kit to make a molding of her hands and feet for us to keep. She had gone above and beyond her duties to make sure the event was special for us. She explained that she hadn't put Beckett down for a moment since they had picked her up at the hospital. She carried Beckett with her throughout her tasks at the funeral home and that was an enormous comfort to me. She had treated her like a live child and had held my infant because, in her words, "babies just need to be held." I couldn't agree more. Felicia has become part of my family because she treated my little girl as her own.

The service itself was more religious than I would've liked it, but I didn't mind in this particular instance. There were a lot of religious family members present, and I was glad that they were being comforted by the psalms. Phillip and I were not the only ones grieving, and the speech given was more than I could've said to any of our spiritual relatives.

There were a lot of memorable visitors. My best friend, Lila, arrived and I walked her personally into the sanctuary. She had been with me when I gave birth to Beckett, and it was appropriate that she was there to help me bury her. My sister showed up, which was the start of a miraculous event because she has been estranged from my family for quite some time. We snapped a photo of myself, my sister, my brother, my grandmother and my father all in one spot. It's a moment that was only possible because of Beckett. We all put away our differences and concerns to mourn my daughter. It was beautiful. It was rare. I'm thankful. Mandi, also at the service, was the nurse who helped me through my surgery. I didn't think any of the nurses would come. As soon as I spotted her, I hugged her. She told me she loved me, reminded me that I was strong and invited me back to talk with her whenever I wanted.

While in the sanctuary, my living children were managed by my brother, my mother and my father. They each took turns with Seph or Mina and both of them were very well behaved. There were lots of hugs as people entered, lots of hugs as people left. Some people were trembling when they greeted us and I thanked every person individually for being brave enough to come. The coffin had been open the entire time and no one had said one negative word. Most people remarked at how tired she looked, or that she looked comfortable. I even heard "beautiful" and "gorgeous" a time or two.

When the room was cleared, my brother and Phillip prepared to carry the coffin to a passenger car. We didn't want her in the hearse, so Felicia offered to simply hold her while in a white, normal looking vehicle. I stood with Beckett for a few seconds and watched her before they put the lid on her coffin. As soon as it was shut, I felt like I was going to hyperventillate. I wasn't ready for her to be closed off to the world. Felicia grabbed my arm and helped me out of the funeral home, allowing the men to carefully transfer her to the car.

The weather was terrible and we all hurried to get into the procession line. Police escorted us on the long road to the cemetery. The sirens were wailing at every intersection, red lights didn't mean anything to us and hundreds of cars veered off the road to allow us a moment of silence. It was an amazing drive. We followed Beckett's car, both of us sobbing, marveling at how the whole world was finally stopping to take notice of our little girl. Once at the cemetery, my dad volunteered to drive the children back to our house - he had been having the hardest time out of any of us. He cried each time he even looked in Beckett's direction, so we didn't argue when he opted out of the cemetery service and did us a favor by removing the children.

Some words were spoken as Beckett's coffin sat atop two tiny pedastals. I sat directly in front of her, Phillip and my sister at my sides. Our families were behind us, our friends behind them. Everyone was crying. When the service was over, I stood and spoke. I thanked everyone for acknowledging Beckett and for helping us mourn her death. I told them of how important she had been and how she had changed our lives in the few months we knew of her. Because of her, my family is closer, my marriage is saved and my children mean more to me than ever before. I was grateful to everyone who honored us by showing up.

I was given a ring by my father in law - it has Beckett's birthstone and six diamonds, all banded in silver. I wear it on a necklace along with a golden letter "B" charm that my mother gave me. We received monetary gifts from many family members and with that money we were able to buy christmas gifts for not only our children, but also for a needy family. We received flowers in bouquets and my grandmother bought pink flowers for Beckett's grave. Eventually, I placed balloons on the gravemarker. I have a picture and more flowers to put out, but I haven't been able to convince myself to go back to her grave just yet.

Seph is taking his youngest sister's passing very well. We explained that her heart was broken so she couldn't live, and he's accepted that so far. When I told him that we couldn't bring Beckett home from the cemetery, he patted my shoulder and said, "No, Mom, it's okay. I'll bring her home." He thinks he can fix everything; my little hero.

I'm not taking it quite as well. The mornings are the worst. I have a terrible time getting out of bed and I feel sick until I have my first dose of pills with breakfast. My body hasn't healed yet, so I'm still on pain medication and it seems to be the only things keeping me upright lately. I have a hard time doing normal things during the day. Wrapping presents is difficult because I'll never pick presents for Beckett. Meal times are hard because my arms aren't busied with feeding Beckett. Putting the kids to bed hurts because there are only two heads to kiss goodnight. The quiet moments in the day piss me off because I shouldn't have any free time at all. I'm supposed to be caring for a needy infant right now, not writing about her funeral.

It's all just backward. She died before she was born. I had to bury my child, instead of the other way around. I'm lacking my youngest child. When someone says, "At least you have two healthy children" it hurts.. because, as a nurse put it, "I didn't have a spare!" I shouldn't have lost any of my beautiful babies and being without her is the worst pain I've ever felt.

I'm exhausted, I'm more sad than I could possibly explain and life continues to go on normally. My physical strength is slowly returning and with that, I hope my mental strength comes too.

Again, I love all of you who continue to read and share in our struggle. Things here are dark but it helps to know that so many people care for us.

The Delivery of Baby Beckett

At three in the morning, I woke up and started worrying that we had forgotten to pack something for our hospital stay. I had notebooks, pens, puzzle books, a travel-sized set of 'mancala', two pairs of clothes, my wallet, Beckett's clothes, the duck blankie and enough fuzzy socks to get me through the cold nights. I stuffed my bathroom supplies in an empty pocket in the suitcase and put it out of my mind. It was two hours until we were finally at the hospital and my best friend, Lila, was there to greet us. She brought along some chocolate milk because she figured I hadn't eaten breakfast - she knows me better than I know myself.

The first nurse we spoke with took her time with getting us registered. She asked if we had picked a pediatrician yet for the postpartum care. I snickered and kind of stared at her in awe, then chided myself and told her, "no." The second nurse was much more understanding and escorted us into the birthing room. She sat and talked with us for over an hour, testing the waters and asking if we had any special wants or needs as far as each step of the process was concerned. We told her that we wanted to monitor the progress of the labor so we could be certain of the exact moment when Beckett was no longer with us. We said we wanted an epidural right away because my last experience with it was less than perfect and I didn't want pain if there didn't absolutely have to be any. It took another full hour to even find Beckett's heartbeat - there was so much fluid to listen through and she was moving just too frequently to catch a steady sound. The rhythm was intermittent, but it was enough to show that she was alive. Next came the IV setup, the small battery of tests and then the introduction of the many nurses and doctors that would be involved. There was Dawn, Christie, Holly, Betty, Bridget, Adonna, Rebecca, Tameika, Natalie, Cathy and Dr Breland himself. A few nameless others were there just to make sure things were done by the book. They each had to ask me their own questions to ascertain the order of each step - and then they had to ask again, just to be sure there were no misunderstandings. I was tired by the time they were ready to administer the epidural.

Lila stayed with me for the procedure, holding onto me tightly as I shivered and whined my way through the next half hour. We giggled over forced jokes while Christie talked me through what she was doing to my spine. First the cleaning, then the numbing stick before the big shot to the spine and lastly the catheter. My body was reacting to the position of the wire involuntarily, and for a while it was a bit of a concern to everyone involved. They upped the normal dosage, let Phillip and my mother back into the room and things quickly progressed from there. A pitocin drip was started and thankfully, I felt none of the contractions for a few hours. To further the labor, the amniotic sac was manually broken and in that moment I lost 3 liters of fluid. The bedding was changed three times in the next hour and the floor was flooded, prompting blue coverings for shoes and nervous laughter from all that gathered at my side. 2 more liters would be lost before it was even time to push. At about 9 in the morning, the contractions became so strong that Christie had to up the dosage twice on the epidural. At 10:30, my two main nurses (Dawn and Bridget) were quietly reapplying the monitor on my belly. They were shifting it, silently watching the yellow dashes on the screen that should have been recording Beckett's heartbeat. I asked, half in jest, if Beckett was being difficult and the look Bridget gave me stopped me in mid-breath. I knew then that I had been taking it all for granted. When Dawn said, "Oh, honey," I hurriedly proclaimed that I had been feeling Beckett move and she couldn't be gone already. The movements, I learned, were simply the wake of the fluid that was being sloshed during each contraction. My baby's heart had been silent since just after 9, crushed from the force of her contracting tomb. I gasped, I squealed and I clung to Phillip so hard that everything in my sight went white. Nothing else existed in that moment. Beckett was gone, encased in my belly but no longer waiting to be born. The nurses left and I suddenly wondered what we were supposed to do. I knew, in theory, she still needed to come out, but I couldn't imagine trying to give birth to a corpse.  Through tears, Phillip assured me that it still had to happen and that it was all very possible. We clung to each other until the staff began to filter back in. Lila came to the bed and fed me ice chips, leaving my hands free to squeeze at Phillip and the bed rails when particularly strong contractions hit. Mom joined us at the bed when I started calling for Dawn, yelling that I was sure it was time.  After being checked, Dawn agreed and I begged her not to leave the room. She used the bedside phone to assemble the team and it took less than a minute to prepare the equipment.

With Lila and my mother on my right and Phillip on my left, my hands and face were covered with loving strokes and firm grips. It was then that the fear set in. At any moment, I would be faced with my child's lifeless body, but only after enduring the intense pain of the birthing process. Between breaths, Lila would kiss my hand and face, repeating that I was doing great and everything was going to be fine. My mother was petting my cheek, caressing my jaw and whispering that I was such a great pusher. Phillip held steadily onto my hand, pinning my shoulder when he needed to and reminding me to breathe, which was more difficult than I can explain. Christie, the anesthetist, somehow managed to squeeze behind Phillip and position herself above my head. She talked me through how to breathe, making sure I understood each foreign step. Dr Breland's voice was the softest of all and I struggled to follow his orders. He instructed me not to force the motions because Beckett's body would be particularly susceptible to manipulation and would not return to a normal shape once my muscles had contorted her. I cried, grunting and squealing in both pain and fear. The voices came from everywhere - seven medical staff members, Dr Breland and my three beloved supporters all urging me onward with separate sing-song chants. The sound grew to a fever pitch and with a final, agonizing rip, my mind went blank. At 12:08, I heard someone say, "She's perfect," and I forgot (for the third time that day) how to breathe.

She was placed on my stomach and the four of us holding hands all cried at the same time. We all slowly started to wipe her down. She was covered in a thick coating of something that reminded me of down feathers. Several hands came together to help me scrape her clean. Her head was soft, devoid of bone or brain matter and filled with enough water to give her the consistency of a weak water balloon. Black hair, styled just like Mina's, was prominent from forehead to neck. She was an awful purplish-gray color and splotches of white skin showed where my bones had been particularly crushing on her tiny form. Her bottom lip was two-toned, purple and pink. Her nose was half sunken, having only one nostril and a second opening that gave way to where her top lip should have been. I have no idea what color her eyes were because she never had the chance to open them. The rest of her bones were just fine. There were no other deformations and everything was in it's own perfect place. She wasn't a monster.

She was 16 inches long and 3 lbs, 14 ozs. She had died comfortably in the womb, not knowing what it was like to have to struggle to breathe or be forced through a birth canal. She was frozen in a fetal position and I knew that I couldn't have asked for a more peaceful passing for her. She was comfortable, and that made it all bearable.

She was abnormally tall and thin, and just like our other children, she had long feet and fingers. She was soft and fit snugly in my hands. For a while, we all passed her back and forth. She was weighed, had her hands and feet printed and we were given an honorary birth certificate. The state wont actually issue us one because she was stillborn, but in two weeks we can pick up a death certificate which is the best we can do. Cathy, the 'keepsake' nurse, helped us wash her in a tiny basin. We scrubbed the ink from her skin and washed the grease out of her hair. We shied away a few times as Cathy was forced to pry open her hands or straighten out her legs so that we could properly clean her. It was just too much to watch her lifeless form creak apart like that. A few pictures were taken, she was put into a diaper and shirt just like the live babies in the ward and was eventually wrapped in the blanket that Auntie Cindy made for her. For a long time, we all just sat and held her. A few of the nurses involved stayed and cried right alongside us. Two asked to hold her. A few other visitors came by, some not knowing that Beckett had already passed and the confusion and tears made for a terrifying few hours.

For the longest time, I sat staring at her, willing her to open her eyes. She didn't look sick at all and I kept futilely hoping that her chest would suddenly rise and fall with a stolen breath. I waited for hours but she never moved. I pulled at her hands, rocked her, cradled her, hummed and kissed her... we had to shift her from side to side in the macabre understanding that leaving her laying on one side would cause her blood to pool and further deform her. I wanted to feed her. I wanted to hear her cry. I watched Phillip hold her for a while and I kept comparing the image to the memory I have of him holding Mina the day she was born. Beckett looked no different.

Johnny Brock and Felicia finally came from the funeral home. They brought a blanket of their own to carry her in because it was a devastatingly cold night. We bundled Beckett in clothes, a hat and two blankets. The pair stayed and talked with us for a while, though none of us said anything of importance. Phillip had already said his goodbyes, so I took a moment to kiss her again and finally handed her over to Felicia. They hesitated only a minute before leaving, not giving me time to panic or demand her back. When the door closed, I collapsed onto Phillip and we leaned on each other, crying. It went on for hours that way. We would crumble, sob, mutter incoherent phrases at one another and repeatedly proclaim that Beckett hadn't actually looked dead. We struggled with the idea for a long while. Later in the evening, emotional pain was overshadowed by physical pain when my body continued to progress with the afterbirth process. A new nurse joined the team, introduced herself as Ashlee and was very sweet through the next few hours. Slightly loopy from the Percocet, I babbled on and on about Beckett and offered to show Ashlee the photos we had of her. She was hesitant, but humored me. She suddenly opened up about her own life, how just a few days ago she had lost her sister to cancer and had only that night returned to work. She was devastated and we bonded for a long while over lost loves and the silly things people tend to say when they don't know what to say to each other. We found each other for a reason, I'm sure.

We fought our way through the night and in the morning I was wheeled into surgery. An accidental overdose of anesthesia caused some unfortunate reactions and it took a whole separate team to restrain me and repair me. I had some minuscule damage from the breathing tube and was given multiple doses of Valium when my own fears caused me to become a danger to myself. I was freshly wounded and stitched in more than one place, but I had reacted violently when waking up from surgery. The team was amazing though and as soon as the trouble began, it was quickly smothered and I was returned to my room relatively unharmed. Phillip was waiting for me when I woke up, as were yellow flowers that Lila had sent. Mom arrived shortly after.

Just a few moments after waking up, the pain was more than I could take. With safety being the main concern of my chosen nursing staff, they administered an intravenous source of Morphine. They felt it was safer than Percocet at the time, though they were immediately proven wrong. With Phillip and my mother at my side, my arm swelled, turned red and began to sting. Suddenly, my chest burned, my throat tightened and my brain shut down. I had forgotten how to speak. I realized I had also forgotten how to breathe. In panic, I stared at Phillip, screaming internally. I heard him say, "No, something's wrong," and Dawn (my main nurse) pounded on the emergency button on the wall. The room was filled before I could blink and people were barking orders across me. I kept hearing, "Tina, breathe!" but I couldn't make myself do it. After nearly two minutes, I hyperventilated, lurching into a hurried pattern of breathing. When they told me to take slower, deeper breathes, I tried and my lungs were suddenly frozen again. I could not, by any means, slow the rate of my breath. I found my voice, tried to convey that I was passing out and told Phillip I was sure I was going to die, just like Beckett had. The staff, including an anesthetist, smartly filled me full of other prescriptions and managed to stop the anaphalactic shock. I am, apparently, allergic to Morphine. After a long while, my body returned to normal, though my arm is still damaged from the initial burn.

After three great mishaps in two days, I was ready for pain relief and sleep. Visitors came and went, calls were made, I drifted in and out of consciousness.. After my final dosing of the night, Phillip returned home to give my parents a well-deserved break and take care of the children. I suppose I was still in a state of shock because the cocktail of medications given to me caused me to hallucinate. For several hours, I wandered my room, hiding behind the infant warming table and avoiding the 'zombie' i was sure was climbing into my bed. I cried and tore at my own stomach, doing slight damage to my surgical wound. A nurse, Amy, found me and was content to spend the rest of the night sitting in my room, making sure I stayed safely in bed. After some new medication, she spent hours talking to me about politics, different countries, the military and poverty. We ended the conversation with thoughts of Beckett. We were both crying by 5 AM and she insisted I try to sleep. I managed to stay out for a total of 45 minutes, then the day began. There was paperwork to sign, people to call... a midwife came in to tell me about the prescriptions I'd be going home with. Many nurses came in to visit, checking on me after the great Morphine scare that the whole hospital seemed to know about. Christie returned to check on me, thanking me for allowing her to hold Beckett... then Mandi, one of the great nurses that had helped me right out of surgery, came up to talk for an hour or so. She told me about her own daughter, how she was going to need a pacemaker when she turned 15 and how a genetic defect had caused her so much strife. We talked a long while about stem-cell research and support groups. She invited me to the surgical ward whenever I felt like coming, assuring me that she'd always be around to talk.

When breakfast was delivered from the cafeteria, the woman carrying the tray simply smiled and nodded. She obviously didn't speak any English, so I nodded back, thanked her and picked at the muffin on the tray. When she returned to gather up the mess, she seemed to be staring at me. I watched curiously as she started to walk away with the tray, then dropped it to the floor and hurried to my bed. She bent over me, hugging me, then leaned back, held my face and nodded. She picked up the tray again and left. It was then that I remembered the sign they had placed on my door. A picture of a leaf filled with tears, floating in a pond. It's, apparently, the universal symbol for bereavement. I was shocked, but thankful, that the stranger had reached out and tried to comfort me.

It took me a long time to prepare to leave the hospital. I had a long bath, cleaned the room as best I could and let Phillip pack all of our things. We stopped by the nurses station on the way out and I handed Dawn one of the Beckett Bears my mom had picked up from Borders. I showed her the name on the tag and thanked her repeatedly for all of her help. We hugged, all of us crying, and we said our goodbyes to the rest of the staff.

I'm now at home, comfortably sedated. My body is unfortunately still acting as if I gave birth to a healthy baby. I'm wearing cold compresses to help stop milk production and I'm having to check both stitched wounds on a frequent basis. I have two days to rest before the funeral. I'll post again when Beckett is buried. Thank you... all of you.... for reading.

Birth Date - Funeral

They're inducing me tomorrow at five in the morning. December 4th will be her birthday. It will also be the day she died. We've started packing for the hospital stay. Beckett's blankie is on the top of the suitcase, along with the ducky outfit we picked for her to wear in her casket.

No one is allowed in the delivery room, but visitors are welcomed after she's passed. We'll only have a few minutes with her while she's alive, so we'd like to keep it quiet. We're not trying to hurt anyone's feelings.. I just want to focus on her while we have her.

Her funeral is set for 10 in the morning on Wednesday. The public is welcomed. We'll all be meeting at Brock's funeral home on Hwy 22, here in Panama City. This is by no means a private funeral - if you feel like you need to come say goodbye, feel free. I know a lot of people have been keeping tabs on us and have involved themselves at an emotional level. I understand, I empathize and I thank you.

We love all of you and appreciate that you've come this far with us.

Funeral Plans

In three days, I had gained back all of the fluid the reductive amnio had removed for me. Six pounds in such a short time... then more and more as the days passed. On the actual date that I was 30 weeks along, my body was technically under the stress of a 36 week pregnancy. That left four weeks from the date of my last appointment until I would most likely go into labor. It was a scary thought. We hadn't finalized plans at that time and we weren't ready to face the ordeal of birth just yet.

Thankfully, it's been a week and no particularly poignant signs of labor. We met with Dr Breland and he suggested we get another reductive amnio to ease the strain. He was going to look into what it would take to get the necessary tools required for the procedure, but he wasn't sure we could actually go through with it here in town. I've been dealing with the pain and haven't felt the absolute need to get the procedure done again. My hips are badly pinched and they do their wonderful socket-jumping routine quite often. It gets hard to breathe, mostly at night, and my enormous belly has grown exponentially in just a few days. My body was so stressed one night that my leg randomly cramped up and I managed to pull a muscle while trying to relax it. I'm a mess. Walking more than a few feet is nearly impossible now and I'm back to maneuvering around in public in a wheelchair.

My hormones are absolutely crazy and I find myself falling apart at the smallest things. Our children have been coming down with random fevers the past few days, and our daughter's new symptoms had me so panicked, I literally collapsed into tears while hiding away in her room. It's nothing serious, in fact it was just a few mosquito bites, but the fact that it -could- be something serious had me inconsolable. I was fine after just a few minutes of the absurdity, but it shows just how nuts the whole situation has made me. When you realize that your children -can- actually die, it puts a terrible strain on every waking day. I'm terrified something stupid is going to happen and I'm going to lose another one of them. Every time we're in the car, I'm sure we're going to crash. Anytime they climb too high on the slide, I'm sure they're going to fall. Anytime they disappear around an aisle, I'm sure I've seen them for the last time. I'm in constant panic mode. My body is already pushed to it's limit and now my mind is getting that way, too.

To sort everything out and make sure we were ready, we visited the funeral home today. Felicia, the woman handling the arrangements for us, was sweet as can be and was really very understanding about our babbling and complete lack of knowledge. We picked a casket right away, signed the necessary paperwork and asked a few dumb questions. When Felicia asked us if we had any songs we wanted to play at the service, we were dumbfounded. What do you play for someone who's never heard music? She has no favorite song and we can't exactly pick out a tune that reminds us of her, since we haven't met her yet. There were just a lot of little things that usually happen at a funeral that -won't- be happening at hers. We still need to plan the programs, but everything else is done.  We looked through some examples of programs and were shocked at how many infant funerals they had organized. Many of the front covers were photos of deceased children, covered in makeup and posed gracefully. It was horrible. All I kept thinking was, "We can't put her picture on the front." Felicia treated that fact with great poise and offered us a few suggestions.. rubber ducks, clouds, her name in yellow, things like that. I'll be working on putting something together for it later tonight. It's a daunting task.

All together, the funeral is only going to cost $1,400. That's a HUGE chunk off of what we thought it was going to cost, but the funeral home isn't charging us for any of the services. They're only charging what it's going to cost to pay for it - the price of the casket, the price of the plot in the cemetery and the payment to the gravediggers. Everything else is free and we couldn't be more thankful.

So, now, it's all ready. It's just up to Beckett when she wants to show up and start the terrible process. Every day I'm sure is -the- day, but we still manage to go about our lives relatively normally. We've finished decorating for christmas and our children even got to see Santa today. We're working on our recipes for thanksgiving and i'm especially thankful that we have the sanity to do so.

Reduction Amnio

We left for Pensacola at five thirty in the morning and managed to still be fifteen minutes late to the appointment. Dr Dobak was swamped yesterday though, so it wasn't any great detriment to him or his staff. Donna, the nurse who always takes my vitals, talked with me a bit in the beginning of the visit. We joked about her funky socks, discussed the pains of the pregnancy and I was horrified to find that I had gained six pounds in just under a week. The buildup of fluid was stacking at an unimaginable rate. Six pounds doesn't seem like a lot, but when you add it to the amount of fluid I already had and consider that it was all packed into my uterus, it's a terrifying reality.

We waited a while more after meeting with Donna, then were put into a room with two ultrasound students from the nearby university. They talked back and forth about lunch plans, recording their hours.... things I couldn't believe they were chatting about while in an enclosed room with a frightened mother of a dying baby. I guess they hadn't been through their sensitivity training yet. They were decent gophers, however, and fetched me water a few times throughout the visit. We sat for nearly an hour in preparation. An ultrasound technician and a second nurse finally came in to start the fun. We have new pictures of Beckett thanks to the tech, though there was so much fluid that most of each shot is just blackness. The nurse was a great help in relieving the tension. She joked about the forms we had to sign and the warning symptoms of infection.. she seemed generally concerned for my well-being, and not just physically. She promised me motrin after the procedure, showed me all of the equipment and was very sweet about answering all of my silly questions.

When Dr Dobak made it in, we got the same tempered, compassionate treatment we always get from him. He sees a lot of very scary things every day and he seems to understand that each of his patients need to be sheltered from that and comforted at every turn. He told us exactly what was going to happen during the procedure and explained things to us as they were going on. They continuously monitored Beckett to make sure she stayed safe. The first step was to clean the skin on my belly to protect from infection. Then, a quick bee-sting shot to numb the first few layers of skin against the enormous needle they were going to stick me with. A few moments of waiting, then the big needle - at first it was nothing, and then this gigantic popping sensation and a pain I've never felt in my life. My legs went numb, my eyes flashed white and I was sure I was passing out. Imeediately, the fluid began to flow out of the needle and it soaked my left side. A clear tubing was placed on the needle and led the fluid into a series of glass bottles for measurement. The pain never let up and was soon accompanied by a severe, constant cramping. Terrified, I babbled on and on, trying to stay conscious. The procedure halted for a moment or so as Beckett became curious and reached for the needle. Everyone got quiet... he moved the needle and watched the monitor, and eventually, Beckett moved on and let him continue his work. In total, they removed two liters of fluid from me. Her 'pool' had been filled with 39 units of fluid in the beginning (anything over 30 is dangerous) and was down to a meager 26 by the end of the twenty minute ordeal. It ended with a sort of draining noise that reminded me of a bath tub.

The change was immediate. My stomach was four or five inches smaller and I could actually see my belly-button. My clothes no longer fit, I could barely walk and the contractions started without a moments hesitation.They cleaned me as best they could, bandaged me and put me in a room to monitor the contractions. We stayed there for an additional hour, gritting through the pain and watching as my body struggled to return to normal. It was scary to think that Beckett could be born right there if my body reacted too drastically. We had just messed with the delicate balance of the womb and it was a very real possibility that the stress would just be too much. Thankfully, the contractions waned out to several moments apart and became bearable. There was still pain, but I wouldn't be delivering on that day.

We left the office a memento - a Beckett bear, from Borders. Dr Dobak and the nurses that worked with us were happy to have the stuffed animal and displayed her proudly on the front station. It was nice to know that she'll be there with them through their difficult careers. Donna hugged us before we left, wishing us the best of luck, just as Dr Dobak had.

I could barely walk when it was all said and done. The contractions, though lessened, continued through the day. We managed to drop off the books and toys we brought to donate to the children's ward and that made the day so much better. I could finally breathe without the pressure of all that fluid and my hips no longer hurt under the strain. My stomach was sore and bruished, but I could take in a breath, stand up straight and even bend to buckle my seat belt. It was amazing.

Leaving Pensacola wasn't a sad event like it usually is. I was glad to be less full and excited to see my toes. I could cross my legs in the car and for that I was seriously grateful. I slept better, even laying on my back for a few minutes, and could stand without issue. I'm still terribly sore, but I was able to get out in the backyard and play.. even if only for ten minutes or so. I walked around in a store (not sitting in a wheelchair like usual) and danced in the aisles. I haven't been able to do that for weeks.

The tightening in my stomach is threatening to return, though. I'm afraid Dr Dobak may have been painfully accurate in his estimation that the fluid reduction will only provide me relief for four days, or so. Beckett is a pro at creating the fluid around her. It poses a whole host of issues I'm not ready to get back to. Early birth, organ obstruction, fatality... We have enough to worry about without the threat of amniotic fluid doing us both in.

For now, Beckett and I are going to bed, along with two Beckett Bears that happened to make their way into our room. :) Things, for now, are okay.

The Dilemma

I've been putting off this post for a few days now. It never gets easier to try to explain any of this. I guess I want to start by saying I never intended for many people to get ahold of this blog and specifically meant it for the family members who wanted to be kept up to date on all of our news. It just seemed a little less daunting than writing emails to each individual aunt, cousin or sibling. I suppose that in a way, it's become my personal outlet and more than just a shouting point for news. I've said a lot of things here that I'm not able to say out loud. Talking to anyone in person is just sort of hit or miss when it comes to this subject. Sometimes I feel like explaining everything to strangers, and sometimes I feel like never speaking of it again. It depends on the day, or the time of day, or the mood... really, it depends on a thousand different circumstances.

Being pregnant comes with a lot of responsibility, not just to ourselves or the babies we're carrying, but to society. Every day that I'm out in public, someone takes it upon herself to talk to me about my bulging baby bump. People ask me when I'm due, cackle about all the great details about having little girls and say other normally encouraging things. I know these are common occurrences and thousands of pregnant women waddle around in this city everyday.. but when your pregnancy doesn't have a happy ending, the conversations tend to grate. Even the people who don't talk directly to me are pissing me off lately. There are some people who will just comment as I walk by, "Oh, looks like someone's having a baby soon!" It's disheartening. I know I'm being a huge whiner right now, but I can't bitch about this in person. Anytime someone brings her up, I want to tell them what's really going on, but I know that won't help anything. It won't make me feel any better and it will definitely upset whoever is trying to congratulate me. It's not their fault I'm losing Beckett but I -hate- that people won't let me have my privacy. It's not my fault the whole world can see that I'm pregnant but I can't take the talks anymore. I cry about the situation everyday and it's harder to keep a dry face out in public when no one will let me have a moment to think of something else besides this impending doom. So, here's a tip for anyone who's reading.. if you see a pregnant woman, think of the possibilities. She may be putting the child up for adoption... It may be an unwanted pregnancy because of some violent circumstance.. there may be a grim ending, like in our case. Most often, pregnancies are a celebrated, happy event.. But if you run into a situation like mine, these 'happy' little remarks can really devastate a grieving mother. If you can't help yourself, just smile and talk about it when she's out of earshot. Try to remember that everyone wants and needs privacy. We can't put a giant canvas over our bellies to shield our babies from the world.

Now that the rant is over, on to the news.

We got lost as soon as we entered Pensacola, which was stressful enough on it's own. The MRI didn't take nearly as long as I thought it would. It was loud and intrusive... made my earrings tug toward magnets, which was weird. We joked that I had been magnetized and was a superhero.. In fact, I'm pretty sure I was controlling the elevators in that building. Beckett held relatively still during the process and they only had to redo one of the pictures. It was a long wait until our second appointment on that particular day.. While we were sitting in the waiting room, the news from Ft Hood was being announced on the TV. We watched anxiously, debating details back and forth. It was humbling to know that there was a great tragedy happening across the country while we were seated safely in an office, awaiting the news about children who hadn't even made it into this strange world. Politics and TV's aside, I started listening to some of the other families in the room talk about their babies. One set of grandparents were "whispering" rather loudly about their daughter losing one of her unborn twins. They were obviously fearful for the second baby and started talking about the terrible return policies for online companies. Apparently, they had bought two of everything, including ultra-expensive mattresses and cribs. Because they couldn't return the second set of merchandise, they had decided against buying anything else, "just in case.." It was awful. Another group consisting of a woman, her mother and her sister, talked openly about certain friends of theirs who had just lost babies. About DNC's and second opinions... treating the situation like they had just burned a chicken and would have to throw it out before trying again. It was all sort of... haphazard. A certain feel of, "Eh, oh well" was emanating in the room and it made me sick. By the time we actually got to see Dr Dobak, I was ready for some good news.

There were two long ultrasounds done and we were able to see a 3D view of Beckett. I'll be posting pictures later on Facebook for those of you who are interested. We were told that she has "Fryn's Syndrome", which I know I've been misspelling for weeks. It's a defect caused by a mutated gene and it can explain all of Beckett's problems. With it, she has no survival rate at all. The chance is literally zero and that's hard to stomach. Hope is sort of a therapy when things get particularly unbearable, but when you're told that there is no chance at all of pulling through... That is when it gets really tough. You don't have any sort of cushion to fall back on and it all comes down to whether or not you're strong enough to watch your child die.

I'm going to be painfully honest here and I'm sorry to anyone this offends. The Fryn's is badly malforming her features. It's known to bend bones and obstruct normal growth.. in Beckett's case, it has enlarged one side of her forehead above her right eye and sunken in the other side. She has these.. protrusions... and that kitty nose.. and when I saw her in 3D for the first time, the only thing my sickened heart could relate it to was Quasimodo from Disney's Hunchback of Notre Dame. Poor Beckett is being so disfigured by this mutated gene and all I want to do is tell her how gorgeous she is.

For some reason (I didn't understand all of the information that was being given to me at the time), her cleft lip is making it harder for her to swallow the fluid around her and practice all those normal bodily functions. She's still creating a lot of fluid though, which is filling up and expanding to a dangerous level. Dr Dobak wants to remove quite a bit of the fluid, over a liter and a half, because the pressure is making it increasingly harder to breathe. I'm not sure of the details.. how long I can go before my organs become too mashed up to function properly or how long she can last being pinned in by all that fluid. In some cases, that amount of fluid can be fatal to a fetus, especially one with so many ailments. Her little heart is so flat and bound at this point... I'm worried about her even making it to delivery. Dr Dobak asked me to come back in and have the fluid removed in a few days.. I'm sure I will, but its a frightening task. The procedure is a lot like an amnio, he's told us, except that it will take nearly ten minutes. It carries all the same risks... eruption, infection, fetal fatality.. They are all minor risks, but 'minor' and 'rare' seem to be in all of our vocabularies lately. I'm the size of someone who's at 40 weeks gestation, but I still have two months to go. It's painful to move at all, carrying all of this unnecessary garbage along with Beckett. I've noticed a lot of other symptoms lately, too... Vomiting every night, swollen legs and numbness in my limbs.. It hurts more and more to breathe during certain hours of the day. I know I'll be calling Pensacola about the appointment soon, I'm just not ready for it yet.

The last part of the visit with Dr Dobak was a sort of question and answer session about her organs. She has one kidney left which seems to be in decent condition but because she has Fryn's Syndrome, they won't accept any part of her as viable. They fear that using her in any donation could possibly pass on the disease. I wasn't ready to hear that. I really thought that it was our only option... that it had to be the reason we were being so strained - that she would eventually help someone who couldn't help themselves. It's not working out that way. The entire pregnancy is ending in a few moments of interaction with a child who will never grow up. We can't bring her home with us and now, no one else will take part of her either. Our only option is a funeral, which didn't seem feasible in the first place. We're in no condition to pay for a six thousand dollar burial but we -cannot- simply hand her over to the medical staff for 'disposal'. She's our baby. We have to bury her. That's what happens when people die... We bury them. We have a ceremony, we visit, we remember... It's a matter of dignity. I'm not sure what we can do to be at peace with all of this, but we can afford to do nothing. The casket alone is $900 and the plot and ceremony can cost up to five thousand... and we're lost. We can't afford our own home at this point and we're barely managing to pay for all of these out of town appointments with specialists. My parents have been extremely helpful with making sure we get all the care we need, but we're all stretched just as far as we can go. I don't know how we're going to manage this. I'm usually very good at handling fundraisers, but it just seems macabre to set up a donation fund for a funeral. I understand asking for funding in medical needs... maybe for housing during hospitalization or assistance with surgical costs... but I've never heard of a funeral cause. I'm just... irrevocably lost.

There was more I wanted to say, but I can't think of it at this point. I'll update you when I remember.

All for Education

These past few weeks have been thankfully hectic. My brother brought his family down to visit for a week, and shortly after that my grandmother came down with an aunt I had not seen in years. I had time for little else, but I enjoyed the visits with family and welcomed the distraction from our everyday problems. (Auntie Cindy, the munchkins are STILL attached to their blankies - thank you thank you!)

We met with Breland a few days back and signed the paperwork for my tubal ligation surgery. They'll do the procedure the day after Beckett is born, whenever that may be. We're sure we don't wan't to try for another baby - there's a possibility this genetic mutation may still be present and it could very well affect any other children we conceive. It's a scary thought. This is all hard enough without having to think about another one of our babies struggling through the same thing. Beckett will be our last and that's how it's going to be.

We have two more appointments set up at Sacred Heart in Pensacola. I had originally planned on no longer visiting with them since we were told that there was nothing they could do to help her. I didn't want to have to drive out of town just so they could tell me again that she's sick and there's no chance for survival. These next few appointments are for a different purpose - the first is a fetal MRI (which is a lot more invasive than I thought it would be.) The pediatric neurosurgeon in Gainesville wants to look closely at Beckett's brain and discern exactly what sort of Dandy Walker syndrome she has. Whether the results will change his mind about the ECMO machine being used, I'm not sure but I'm not going to get my hopes up. The second appointment is to meet with Dr Dobak to discuss the procedure involved with donating her organs. We're not even sure they can be used at this point and during a recent ultrasound, we found that one of her kidneys had slipped into her chest cavity and would most likely not be viable. That leaves one kidney. Dr Dobak will have the answers and that's what I've been waiting for. I don't want her life to be JUST a tragic story - I want part of her to help someone.  We leave for Pensacola on Thursday, November 5th.

In an effort to educate people on Beckett's particular syndromes, we agreed to be shown to medical students at a college here in town. Ultrasound technicians and nurses filtered in all around us in a half emergency room, half classroom setting. They asked a lot of questions about our other children, about Beckett's prognosis and about our plans. An ultrasound was done, showing each of the defects. The students were quizzed during the ordeal and the administrators answered not-so-average questions that you wouldn't find in text books. Her little heart looks more squished than usual and I'm afraid it's not strong enough to hold out until delivery. There seem to be more organs stuffed into her chest, which isn't a good sign either. Nothing was too difficult to deal with until they started focusing on her hands. Beckett had the hiccups at that moment which was making her hand leap away from her mouth, then land back on it in some fetal version of peek-a-boo. It reminded me of my youngest child playing "where's the baby", and I couldn't help but cry. I can't get past the fact that I'll never see her do any of these normal baby things. I'll never be able to wrap her up in blankets, feed her or even play peek-a-boo. The stupid little things you get sick of when you have to do them everyday. It's an awful, sludgy feeling. Everyone at the event was very professional and the main administrator walked me to the elevator when it was all over. It was then that I noticed she was crying and I didn't know what to say to her. I sometimes forget that other people are affected by Beckett (or rather, the whole situation) and am dumbfounded when I have to comfort them. I hugged her and agreed to come back when I had an opportunity. There are always more students to teach.

On a happier note, the bookstore I previously worked for (Borders) has released it's holiday bear. It's a panda named Beckett. You can view the bear here. It's a huge coincidence that a company I worked for (and my father STILL works for) has designated this limited edition, brand new bear with my unborn baby's name as their holiday mascot. I'm always amazed at how the world works. My ex-supervisor bought one for me just yesterday, and I'm excited to have a forever reminder of our little girl.

More updates next week when we get back from Pensacola.

She Has Fingers

As I'm sitting down to type this out, my stomach is already lurching. Anytime I actually have to think it all out and try to put it to words, my whole digestive system flares up angrilly. We left for Gainesville early in the morning of October 6th. Our first appointment that day was with Dr Richards (and his technicians) and the ultrasounds they performed took over two hours. The first technician was really very sweet - she would explain everything she was looking at during the ultrasound and was happy to point out that Beckett has fingers and toes and does not, in fact, have clubbed limbs. She even printed a little picture of five fingers waving at us and typed "Hi Mom And Dad!" on the sheet. When she scanned Beckett's face, I was horrified. She has a bilateral cleft palate, which means both nostrils flare down into an opening that leaves the entire top portion of her mouth agape. She has no top jaw to speak of. Just the tip of her nose and then nothing. The picture reminded me of a lion's face, so she imeediately became our little 'kitten'.

The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.

He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.

Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.

We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.

When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.

The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.

He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.

The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state.  She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.

He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.

Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening.  If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.

She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.

We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.

Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."

He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.

We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.

Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her.  We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.

I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it.  I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.

She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.

If there are further appointments, I'll update you.

No News is Good News

The visit with Breland took longer than we expected. He had an emergency C-Section to attend to, so we were shuffled in and out through a two hour procedure just to see him. It took him a minute or so to even find Beckett's heartbeat and that scared me so badly, I literally felt pins in my skin as my adrenaline surged. When he found the little sound, it was distant but very fast. She's still alive and her eager heart is thumping just as hard as it can.

We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.

The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.

It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.

I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.

My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.

I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.

Another Thank You

We've had a lot of support from our family these past few weeks and we're not surprised at how our extended relatives have rallied behind us. We can always count on blood to raise their fists the highest and shout the loudest when it comes to our causes.

I wanted to take a moment to thank my mother's side of the family for celebrating Beckett in every way possible and also for supporting us in what they know is a difficult time in our lives. My mother's sisters, in particular, have been the most vocal in reminding us that we're not alone through this struggle. It's hard sometimes to remember that Beckett's story travels to all four corners of the world and these fantastic ladies remind us that we have an army in our corner to fight and praise and celebrate and grieve when each action is appropriate.

This afternoon, we received a package from Auntie Cindy (on the far west coast) that had a special little something for each of the kids. Mina has her very first Halloween outfit, Seph has 'scary' underwear and a super cool shirt that glows and even Beckett had something. A specially crafted blanket in yellow and white, sporting a super-soft duck on the front and ultra-slick silk material on the back. It's exactly what we were looking for but we couldn't find. Thanks to Cindy and her hard work, we now have a beautiful blanket for Beckett when we were sure we'd never be able to find one! It was impossible to find anything yellow and this blanket is beyond what we were hoping for. We're currently hiding it from the other two munchkins (who LOVE silk) and plan to take it with us for Beckett's delivery. I've made my user photo a picture of the blanket. Thank you, thank you, thank you Auntie Cindy.

Appointments are coming up quickly. This Friday is the first, then on Tuesday we leave for Gainesville and Thursday is Pensacola. From the 5th to the 9th, we're going to be a hot mess with all the traveling and specialists visits. We have to drive five hours one way, then seven the other and then two back over the span of three days. It's a little scary, but these trips are absolutely necessary. Some people have suggested we stay in a hotel during our visit to Gainesville so that we won't have to travel at 2 in the morning or 10 at night, but I'm not sure it's something we CAN do or WANT to do just yet. It's a long time to be away from our babies, even though I know they'll be having a complete blast with Mimi and Poppa that whole week.  I'm eager to get Beckett all the help and attention she needs, but I'm just as eager to spend as much time with Seph and Mina as possible.

More news on Friday, after we meet with Dr Breland.

Appointments

The updates will come slowly from now on. Our next appointment is October 2nd, in town with Breland. After that, on the 6th we'll be in Gainesville to speak with the surgeons/delivery teams/internists... It's going to be an all day affair. It will take us five hours to get there and we have to leave at 2:30 in the morning to make our first appointment in time. The second appointment that day will be at 3 in the afternoon, so we have a whole day of nothing to do in a strange town until we can meet with the other specialists. After that, on the 8th, we have an appointment in Pensacola with Dr Dobak. It's a huge cluster of traveling and worry.

We're extremely grateful to "Mimi" and "Poppa" for cancelling their trip to visit family. If they headed west like they had planned, our children would have no one to watch them while we travel these few days in October. These appointments would've been impossible had they been on vacation, so a HUGE thank you goes out to them.

Final Amnio - More Specialists

The final results from the amniocentesis came in today. All of Beckett's chromosomes look normal and her fluids came back fine, showing that she has no spinal defect. With no abnormalities, we're not really sure what is causing the fluid/spotting in her brain OR the diaphragmatic hernia. Just some random skew in her creation that gave her these issues is the best we can come up with for now.

Our next appointment is with Breland on October 2nd. That will be to check her heart, maybe do another ultrasound and talk more about what his role will be in the progression of the pregnancy. October 8th is our next appointment at Sacred Heart in Pensacola and we expect Dr Dobak to do another ultrasound to check the growth of her organs. We spoke with his office today and had a long talk about what we could expect in the next few weeks. The ultrasound still looks abnormal and he has real concerns about Beckett, but can't pinpoint where her troubles are coming from. We can do nothing about her brain for now but her capacities will be checked after birth, hoping she makes it that far. We have an appointment with the pediatric heart surgeons in Gainesville to discuss what can be done for her concerning her diaphragm, lungs, stomach, heart  and intestines. There, they have a special machine that can circulate her blood outside of her body to keep her oxygenated. They also have the ability to inflate her lungs for her, help them to grow and even provide us with a lung transplant, given there is a suitable donor found. This is all something we've taken in stride because we have to keep in mind that she could pass at any moment. Her body may just shut down because of the issues she's faced with and we might not make it to her due date.

We'll be setting an induction date based on the rate of her growth. They don't want to let me go into natural labor because there are no doctors in town that can help with her case. We will have to be in Gainesville (or st. petersburg) to give her a fighting chance. After meeting with the heart surgeons, we'll meet with a delivery team to sort out the details. Usually, meeting with the two teams takes two separate trips, but because we live nearly five hours away from the facility, they're jam-packing it into a one day trip. Heart surgeons, specialists, neonatal nurses... I'm taking my voice recorder and notebook so I don't miss a word. I'm nervous, excited, and just a little bit hopeful.

We allowed ourselves to go shopping for baby blankets today, looking for something sweet and yellow. We couldn't find anything in that colour, but it was nice to daydream about swaddling Beckett in anything at all. Our son now refers to her by name and tells everyone about her, even strangers he meets in stores. "The baby in Mommy's tummy is named Beckett," and then he goes on to say everyone else's names in our family. It's really adorable. It makes it real when one child is excited about another child. We're lucky to have kids that are happy to have siblings.

Not Many Answers

Another appointment with Dr Breland and we're still waiting to see what will happen with Beckett. He asked us (as he does during each visit) if we were considering aborting her and without hesitation, we said no. It's the same each time. We never have to think about it. Just no.

His explanations were less optimistic than they were medical. He said Beckett doesn't have much lung tissue to speak of. The question we had about steroids maybe making a difference in her growth was shot down. Steroids will only enhance what tissue is there. It won't help her to -form- lungs, only to strengthen them, and what we gathered was that she isn't expected to even grow them.

He gave us instructions on what to do if I went into labor. He hypothesized that labor could start as early as two weeks from now. At that stage, a normal fetus would have an 80% chance of surviving outside of the womb. Beckett, however, has no chance at this stage in her development. We still don't know if her chances will improve, but we have another appointment in two weeks to check on her. Our follow up with Dr Dobak has yet to be scheduled. It's a long, arduous process and I'm a little out of breath from just thinking about it.

Breland says we will most likely be delivering her at St. Petersburg, nearly 8 hours away from where we live. It's the most capable facility for our situation. We're now faced with the sorts of questions that should never be asked of parents. If her brain functions, but she has no lungs, will we keep her on life support or just acquire comfort measures for the few moments she has? Will we even bother with life support if there is no lung tissue? Will we consider (if her brain improves in the next few weeks) surgery to correct her heart and diaphragm while she is still in the womb? The last question is... strange.... the process to operate on her while she's still inside me is a shakey, experimental one which happens to be very painful to both mother and baby. These are all questions we can't answer until we're faced with their respective burning bridges. We need more information. More tests are needed to ascertain what condition her organs are in and at only 5 months gestation, we're not sure we'll get the answers we need.

Beyond all the medical business, there are other equally painful ideas to sort through. When I think of Beckett, I imeediately think of her lip and what others will think of when they see her. Even the idea of an open casket is painful, not because I'm afraid of looking at her, but because I'm afraid of what others will feel. I have two beautiful, flawless children who don't have so much as a scar, much less a gaping hole for a top jaw. It's beyond reason that on top of the life-threatening issues she faces, she also has to harbour this monstrous sign of struggle and deformation. I want to take pictures of her whether she's alive or not and be able to show them off with pride! This is my baby girl and she fought harder in her short time than any of us ever have! I know no one will say a thing because everyone involved is family, extended-family and friends. I want people to look at her, unafraid, and understand how important she is. She is so much more than a statistical anomaly. She's an idea, a belief, a hope and a planned part of our family. Not a day goes by that someone doesn't stop me and say I have the most beautiful children - I don't want Beckett to be any different.

We're doing everything in our power to help her. We're seeing the best doctors, planning everything down to the tiniest detail for her benefit and working to make sure she is remembered in the best possible light if and when she passes. We still have her for now and every move she makes is a great comfort to me.

We expect more amnio results at the beginning of next week.

The Amnio Preliminary Results

Sacred Heart contacted us today (after a weekend of worry) and let us know of the amniocentesis findings. The chromosomes responsible for Trisomy 13 & 18 (both fatal) and Trisomy 21 (otherwise known as Down Syndrome) look normal in their current state. This is tenative, hopeful news. There are still other chromosomes to test but so far the idea that whatever condition her brain is in is safe enough to sustain some form of life is an exciting change of pace. We've been so worried that she wouldn't have the capacity to survive outside of the womb because of these certain chromosomes we had never heard of. As of today, we're optimistic and don't believe her brain will be the cause of her demise. No Trisomy 13. No Trisomy 18. No Downs.

The cleft lip is still a factor. Dr Dobak worried that it was caused by a chromosomal defect, but has so far found nothing of the sort. We still have a week or so to wait and see what the other chromosomes show.

The last hurdle she has is her heart/lungs. Because of the diaphragmatic hernia, her heart is putting considerable strain on her lungs and there is still fear that her organs wont develop fully because of this. Now that the idea of Trisomy is out, we expect her to undergo heart/lung surgery shortly after birth (granted, she makes it). There is still the constant threat of passing in the womb and I'm excited every day that I feel her move. Moving limbs means her heart is still pumping and it's all I have to hang on to right now.

I have already picked a casket, a funeral home and have begun designating a charity for donations during the services. With everything in place, I think I'll stop focusing on what needs to be done in the case of her passing and start to revel in the semi-good news we've received. She's still in more danger than any baby should ever be, but now at least we're skeptical of her death.

On a different note, I've had a lot of questions about her name, so I'll explain here. Beckett, her first name, isn't the most feminine, but its a strong, distinct name that I'll never forget. Etalei is an original name and is pronounced Et (get, sans the 'g') - uh - lay. Et-uh-lay. Etalei.

Our next appointment is with Breland and is only three days away. I have more questions for him concerning the growth of her organs and how we can help. I remember giving Sephire steroids in the womb to assist his lungs, but I'm not sure that's applicable in Beckett's case. I'll update you then. Thank you for your letters and comments.

Introductions

September 9th was my fifth wedding anniversary - a day my husband and I had dedicated to finally spending one full, celebratory occasion together. With a slight hitch in our plans, we had to attend an ultrasound of our unborn baby to determine it's gender and measurements. It wasn't an unhappy addition to the day and we were making bets on whether the baby would turn out to be a boy or a girl. I won. We are having a girl.

The ultrasound had gone on for more than half an hour, much longer than I expected. The good news was suddenly dwarfed when our technician said something along the lines of some findings looking "concerning". Something about the brain.. the heart... the lip. She quickly ushered us into a private room and there we waited in fear for our doctor, Dr. Breland.

I cried. My husband, Phillip, sat quietly, handing me tissues. Breland finally arrived and told us that our unborn girl had enlarged ventricles in her brain. Her lip seemed to be cleft and her heart had begun growing on the wrong side of her chest. He wasn't sure what all of the symptoms meant but he was concerned enough to contact the Sacred Heart Health System in Pensacola and schedule a next day appointment with a perinatal specialist. He assured us that Sacred Heart would conduct the appropriate testing on the fetus and let us know what to expect concerning her health. It was frightening to know that a perinatal specialist was willing to see us so quickly, especially considering the fact that appointments with doctors of that caliber are nearly impossible to get and usually involve a wait of weeks or months.

We left confused, but hopeful. We stayed hopeful through the drive to Pensacola. We were hopeful (and tired) through the initial ultrasound and even chatted casually with our technician, discussing baby names and birth control. By this point, being only slightly fearful of what waited in our daughter's future, we named her Beckett Etalei, determined to make her as much of a real person as she could be.

The specialist, Dr. Dobak, conducted a second ultrasound and, with his hand reassuringly on my leg, let us know of the findings. Beckett's heart was indeed on the right side of her chest, though it was beating fast and strong. The left side of her chest was filled with her stomach and intestines, having seeped in through a hole in her diaphragm, known as a diaphragmatic hernia. The displacement of her organs wasn't allowing her lungs to form properly and he feared she would never learn to breathe. Her brain was as Breland feared, full of enlarged ventricles, fluid and other various holes. Dr. Dobak explained that a brain in this condition would not sustain life and was probably caused by a chromosome defect known as Trisomy. (I'll explain this condition further next week) The defect, we're told, is rare and occurs once in 25,000 babies. To top it all off, the normal formation of her face was marred by a cleft lip, which is probably the result of the same chromosome defect.

Stunned, we also learned that her chances of making it to her delivery date alive were slim. If she manages to survive until birth, Dr. Dobak does not expect her to live longer than a few hours. Some lucky families get a few days or weeks with their children if they have this particular Trisomy defect, but survival is almost entirely unheard of.

The visit included an amniocentesis. The information would be able to determine exactly which chromosome had malfunctioned in Beckett's creation and would give us more clues on how long we could expect to have our baby girl with us. The results from that test come Monday. We met with a genetic counselor who will be assisting us through the process of carrying Beckett and ushering her on to her next phase, whether that be surgery to correct her heart and other organs after delivery, or a quiet passing due to the Trisomy.

Medically, our next steps include weekly ultrasounds to make sure Beckett is still alive in utero. We'll be keeping a close eye on how she functions and grows until her estimated due date of January 20th. In all other aspects, we're trying to stay level-headed about how we should proceed. We have discussed funeral homes, burial plots and what colours her funeral dress and flowers should be.

There is very little hope so far, but we haven't extinguished the thought of Beckett surviving. With more information available only after Monday, we can't do much but wait.