Friday, December 7, 2012

The eyes of a child

It's been the kind of night that started with a relaxing look on Facebook, that degenerated into a hot shower with sobs, tears, and a swollen face from so much crying.

I've been carefully following the story of a local 2-year-old boy who was hit in the head about 6 weeks ago by a large tree branch that fell on him as he played in the yard of his daycare facility. Total. Freak. Accident. He has severe brain injury--I'll just put it that way. About two weeks after that terrible event occurred, a 4-year-old boy in another part of the U.S. was also pinned by part of a tree that fell on him while he played in his grandparents' backyard. Another case of terrible timing--freak accident all the way. He seems to have sustained even greater brain damage, caused by lack of oxygen for a VERY extended period of time. The 4-year-old boy was discharged home today. Initially he was intubated, and according to the parents, when the day and time came to extubate him, they had fully prepared themselves for him to pass. BUT, instead, he breathed on his own. His vitals stabilized and he got stronger. Of course, the one thing that doesn't know how to fix itself and regenerate--the brain.
Ah, the brain. In my opinion, it's our true life force. It is what makes us who we are. And so they took their baby home today and will continue to pray for a miracle--a miracle of full healing. Without that miracle, they have been told their child will remain in the state he is currently in--unable to move, swallow, eat, or see clearly.

And as I read the blog, and watched the online news story, I felt horrible for the parents, and imagined their lives and their possible future with their son. And then, selfishly, I began thinking about my own daughter. We chose a different path for Addison. She was born with severe brain injury, most likely the result of a cord injury. Total. Freak. Accident. Twenty-or-so hours after she was born, they intubated her because her breathing and posturing suggested she may have had a brain injury, and they feared she might (as the neonatologist put it) "forget to breathe." Once we had our test results and diagnosis of Severe Hypoxic-Ischemic Brain Injury, and had a good picture of her prognosis (never moving beyond the vegetative state she was born in), it was not even a tough decision to put her into hospice care and let her die. Yes, let her die meaning starve her to death while pumping her full of pain meds in the hope that she didn't have any pain (if she was even capable of feeling pain).

As I read this boy's story, and hear from the parents that withholding feeds through the feeding tube is NOT an option for them, I wonder what the difference is between us. I think it's that they believe in miracles, and we do not. Not even a little bit. Neither my husband nor I believe in a god, a higher power, or a spirit that lives beyond this world. In my mind, your brain is your soul. It keeps all your information, knowledge, creates feelings of pain, compassion, joy, and everything in between.

But I also wonder if it's because Addison never opened her eyes. I wonder if I would have felt differently if she had stared out into forever with her beautiful blue eyes. I wonder if I would have looked deep into them and hoped that she could see me and know me. I wonder if I would have hesitated and hoped that things might change for her. Although I don't believe in miracles--I do believe that traumatic brain injury is incredibly complex, and that individual reactions to the physical trauma vary greatly. I wonder if that played a role in our so-called "easy" decision to let her go. Because when I saw the picture of this little boy with eyes open, staring off with a blank stare, I try to see what's behind those eyes. And if I look hard enough, I could let myself believe I see that he's seeing me back. I wonder if I would have felt that with Addison. I wonder.

But the fact is that she didn't open her eyes. But she did breathe on her own. There was no dramatic moment of removing the breathing apparatus and saying our goodbyes as she struggled to breathe. I cannot imagine how that would feel. Ours was a somewhat slow process...just waiting day by day to see how long she could go without fluids before she succumbed to death. It's sick to think about it. It makes me sad and angry. It makes me angry that 3+ years later I think of her every day and wish I could turn back the clock. Of all the stupid mistakes, bad relationships, dumb things I've done in my years of life, I wouldn't change any of them. But if I could go back in time to the day before Addison stopped moving, I would do it. I would go back to October 26, 2009 (back an extra day, just to be safe), and I would demand a c-section. I would be so drastic as to cut my abdomen to the degree where they would HAVE to do a c-section. I would save my daughter's life.

We're coming up on Christmas, and with an eager 6-year-old and a sweet jolly 21-month-old, there is much planning and celebration around the holiday. And it's the feeling of actual feelings that bring the pain to the forefront, I think. We hung our stockings, and we hung one for Addison. I can't bear not to hang it. But all the fun traditions have become less fun after Addison died. It's easier just not to feel much--to get stuck in the mundane boring life stuff and feel nothing, than to feel the happiness and the pain that goes with it. And it's not fair to my beautiful living children that I feel this way. To feel that sometimes I have to muddle through when I should be doing things with a cheerful heart. I know I will do the very best I can, and that is all I can promise.

And as this holiday season comes into full swing, I will continue to follow the lives of these 2 young boys and their families. I will not pray for them, for that would be futile. But I will think of them and hope for the very very best. And that, too, is all I can do.

Tuesday, November 13, 2012

Addison at 3

Life is good. I have a ridiculously bright 6-year-old little boy Calvin, and a spunky chunky 20-month-old little boy Ryder. Our boys love each other so much, it warms my heart. But I can't help but feel like our family was totally ripped off when Addison died. She would have turned 3 on 10/28/12. It was a Sunday, and our family was out running errands and such. I mentioned to Calvin that Addison would have been 3 that day, and he said, "well can we go to her brick so I can hang the butterfly chime in the tree?" I thought it was a brilliant idea. There is a nearby cemetery with a Children's Garden. We got Addison a brick with her name, birth date and death date, which is part of the walkway in the garden. There are 2 trees in the garden, from which various chimes and ornaments left by loved ones hang. Calvin painted a butterfly chime for Addison MANY months ago, but we haven't been to the cemetery since last year when it was placed. So, while my husband stayed home with the baby during nap time, Calvin and I made a trip to her brick, hung her chime in the tree, and laid a pink rose from our garden (interestingly, the ONLY rose in our garden) on her brick. It was sweet of him to think of his sister. This is a boy who points out photos of Addison around the house and tells Ryder, "this is your big sister." It was very sweet, visiting her brick, but I didn't cry. I didn't cry until November 3rd, the night before the anniversary of her death. I like to torture myself, so I waited until everyone in the house was asleep, then I watched the photo montage video the Now I Lay Me Down To Sleep photographer made for us. The music alone makes me weepy. Then I posted something on Facebook about the night she died and my memories of handing her off to the funeral director. The next day I showed Chris the post and he completely broke down. He shook with sobs in the way I haven't seen since the week Addison was alive. These days I've given up on the traditional therapy route. We go to the annual Walk To Remember, we light a candle on October 15th, and I speak on parent panels during bereavement training at 2 of the hospitals in our area (one where Addison was born). Other than that, I take my anti-depressant, work out a few times a week, learn new crafty things on Pinterest, focus on the family that remains, and let time tick by. Time does seem to help the wound not be so tender to the touch. It's hard to think about how our lives would be different if Addison was here. She's not, and she never will be. But she has a place in our family that will not just seal itself off and disappear. We will hang a stocking for her this Christmas. Calvin will continue to teach his baby brother that we were supposed to be a family of 5--not 4. And life goes on. xoxo

Tuesday, November 15, 2011

Two Years

I have such a hard time putting my feelings into words these days. In so many ways I can't believe it has been two full years since Addison was born and then died. The experience of losing her has definitely taken its toll on me physically and emotionally. I think I'm finally in a place where life should be feeling more "normal," what with an ever-growing 8-month-old baby cutting teeth, crawling and cruising; and a 5-year-old who often acts like he's 12. I've got my hands full, just like every other normal mom. But I really feel anything but normal.

Many of my relationships have suffered over the past couple of years. I'm just so damned self-centered; it's all about MY loss, MY sadness, MY anxiety, MY hole in my heart that can never EVER be filled. I'm sure it's incredibly exhausting to even want to be there for me after all this time. I definitely turned inward in dealing with all the Addison-related emotions, and I wonder if I'll ever learn how to unwrap myself again. My marriage has suffered the most, I think. We've been riding the train of never-ending emotions, hoping it would come to a stop in the Station of Life Satisfaction and Happiness once our rainbow baby was born. But I guess it's not that simple.

And now our precious baby Ryder is 8 months old and growing, growing, growing himself right out of babyhood. He lived. We made it through pregnancy and even through most of the big SIDS-risk months. He seems to be developing normally, and he's really just such a sweet, happy, fat guy who smiles at darn near everything. He's adorable and I love him so much, and his big brother absolutely ADORES him. And I think this is really all I ever wanted, right? But I'm still torn up inside, and half the time I don't know why. I don't know if I miss Addison, or if the experience of losing her ruined my naive notion that a person could live happily ever after, or what. And it's not that I'm Boo Hoo Sad anymore. I'm just...empty in a way. Living, going through the motions, attempting to find my happy moments. But just here.

I think I'm going to stop right here because this post is going nowhere. I think I just needed to get it out. Maybe my meds need to be readjusted after all. Maybe I just don't know how to be a happy person, and I need someone or something to blame. Because it just doesn't escape me how much I have to be happy about. I am a very lucky girl....a very lucky girl who is still missing something, even 2 years later.

Friday, September 23, 2011

Still missing Addison

My laptop crashed somewhere around June. My desktop picture for the past 18 months or so had been one of Addison. When I got my replacement laptop, I put a photo of Calvin and Ryder on it. A couple of weeks ago, Calvin (now 5) asked why I threw the picture of Addison away. I told him I didn't throw it away--I just replaced it with a picture of him and his baby brother. He said I should have Addison there instead, so I let him pick a photo of her. He did, and it was the same one I had for all those months. She has her pink blanket with an "A" on it--the same one Calvin has in his room.

Fast forward to this past Saturday night. Calvin was very tired. It was warm that day, and he had his first soccer game, and there was a lot of excitement surrounding that. He snuggled up on the couch with me and, out of the blue, started talking about Addison and how sad he was that she doesn't get to grow up. He said,
"sometimes I think if Addison could have grown up, she would look like A [his 5-year-old cousin]." I told him I thought maybe she would have, too, and said that I was sad along with him. I reminded him how lucky we are that we have Ryder now. And a few minutes later he snuggled up against me and started wimpering, and said something I couldn't understand. He repeated it: "I want Addison." When I put Calvin to bed soon thereafter, he was adamant that his A blanket was on his pillow, with the "A" against his cheek.

I wonder if Calvin gets as pissed with me as I get with other people when I tell him that everything is okay because we have our baby brother now. I sure hope not, because I hate those stupid platitudes still.

I live in a strange place now. I'm coming up on Addison's 2 year birthday, and I've been an emotional mess again (or still--depending on who you ask). I have been through so much in the past 2 years, and am SO VERY GRATEFUL to have my sweet baby Ryder, but he just doesn't replace Addison. And I knew he wouldn't. It's just that I didn't know I would still have moments of such raw emotion this far out from her birth and death. I thought I would feel better and more healed than I do at the 2 year mark.

I wish I could scrap 2009 from my memory completely. Truly, I wish I never got pregnant with Addison, and that's the horrible truth. I would happily take it all away from my personal life experience if I could, because nothing good has come from it. I haven't started any societies or charities or 5ks in memory of her. I'm not a better, kinder, gentler person because of watching my baby die. I still sweat the small stuff because that's what I like to think I can control. I know even more vividly now that nothing I say can take the pain away from people who are suffering personal tragedies. And I know that losing Addison has in no way granted me amnesty from future loss and heartache. And that is probably the worst part.

So since I'm stuck with the reality that she WAS born and she DID die, I want to share her. But being almost 2 years out, it's probably expected that I should be performing at 100%. I should pretty much be "over it," especially since I was lucky enough to have my rainbow baby. I wish I could be over the really painful part, but I'm not. I still miss her, and I still want her, too. And I wish someone--anyone--would ask me how I'm doing and say her name out loud. Addison. She did exist and she did have a name.

Sunday, August 28, 2011

A Terribly Late Tale (this time with a happy ending)

I am a pathetic blogger, and that’s the truth. The short of the story is that I have an almost-6-month-old baby boy, Ryder, who is absolutely delicious! Big brother Calvin, 5, is completely in love with Ryder. Below is the note I put on Facebook the day after Ryder was born. Why I couldn’t take that extra step and just post it on this blog is completely beyond me; I have no excuse. (Ryder stayed in the NICU for about 48 hours after he was born, and although it took a good 4 weeks of pumping and feeding, I finally got him on the breast. )

Life is good BUT.

I still miss Addison, who was born 22 months ago today. Lately I’ve been having more difficulty with my emotions surrounding Addison, and balancing the happiness I feel in having my 2 boys, with the sadness I feel in losing my daughter. This is going to sound strange, but sometimes I forget that Ryder is Ryder, and not Addison. Like, I was looking at Halloween costumes online the other day, and I saw a boy/girl costume combination, and thought that it would be perfect for my kids. And a split second later, I remembered that I don’t have a boy and a girl—I have 2 boys. It’s almost like my brain forgets that I lost her, and Ryder is a different person. Even as I type this, my throat is starting to get scratchy because I could burst into tears at any moment. The tough thing is that I know there would be no Ryder if Addison hadn’t died. And the cuter and sweeter Ryder gets (and he is just the best baby ever), the more I wonder what Addison would have been like. And that makes me feel incredibly guilty, because I love Ryder so much, and I wouldn’t trade him for anything—not even Addison. I just wish I never lost her in the first place. God, wouldn’t that have made my life so much simpler?

Anyway, that’s what’s going on. My baby is amazing and I love him more every day. And my dead baby is still dead. And I miss her so much. So very much.

Posted originally on 3/3/11
Thanks to everyone for all the support and love. I went to the hospital late last night because I didn't feel Ryder moving as well as he usually does at that time of night. I thought I might be overreacting, but based on what happened to Addison after the same type of feeling, I had no shame in showing up at L&D. During the first hour I was there, he had a pretty good heartrate deceleration that led them to keep me overnight for monitoring. The little monkey had another decel with a slow recovery, which brought the doctor in to review the strip and discuss a game plan. We agreed with the doctor that, based on my history, we should just do a c-section. Ryder had the cord wrapped around his ankle, so that was likely the cause of the decels. It was a huge relief to hear him cry when he came out. He was born 3/2/11 at 3:35am and weighed in at 6lbs 13oz and was 19" long--not bad for exactly 36 weeks. Ryder will likely stay in the NICU for a few days, but he is doing well. Chest x-rays were good and labs were normal. He's getting a low level of oxygen through a cannula (the little under-the-nose thingy) due to low O2 saturation levels, and is on a 48-hour course of antibiotics as a precaution. He's not eating yet, but getting IV fluids for now. I'm busy pumping so I can be ready to feed when he's ready to eat. I got to do skin-to-skin for a few hours this evening and he was rooting around, sucking on a binky (I was SO tempted to let him have what he really wanted), looking around, and showing lots of personality. Of course it's disappointing that Calvin can't come see him (flu season) and we can't have him in our room like a "normal" baby. But I am just SO incredibly thankful to have him safe on the "outside," to see how well he's doing, and know he's going to be just fine. But that doesn't stop me from keeping my fingers crossed that he makes it to our room before I'm discharged on Saturday. And a HUGE shout out to the awesome staff at Northside Forsyth. At this point everyone knows about Addison and they have all been incredibly supportive--including helping me break the rules by going to see Ryder only 6 hours after his birth. It has been an awesome experience so far. And of course I am enjoying a very speedy recovery, so I can't ask for much more. Thanks again for all the well wishes and positive thoughts--it means the world to me!

Monday, February 21, 2011

Counting Down to Something

It's been so hard to sit down and write about what's going on in my head. I don't want to give my anxiety a voice, but it's so overwhelming right now. It sounds ridiculous, but my anxiety seems so unmanageable at times that it's easier to just sink into a near-depression and accept that this baby will die, too, and if he lives, it will just be a happy surprise. It sounds sick and wrong, and I don't know how else to manage the terrible thoughts as we tick down the last 2 weeks before the amnio and hopeful c-section the next day (scheduled at this moment for 3/8/11). I want to be hopeful, but it scares me to feel that way. I don't know that I can live through Ryder dying like Addison died. I'm afraid to put a nursery together, although we bought a new Pack-N-Play tonight for him to sleep in during those first few months. I need a new mantra, but instead I will just keep busy (my doctor won't take me off work anyway), continue to breathe, and see what happens. Please live. Please be healthy. Please let me be your mom.

Sunday, January 9, 2011

I'm obviously a very emotional pregnant person

**WARNING: This post is full of the rants of a post-loss pregnant type (me). It's long and includes dialogue that is likely only interesting to me. Attempt to read at your own risk! :-)

Reader's Digest Version: I'm just about 29 weeks, c-section scheduled (after MUCH drama) for 3/9/11. I have an excess of amniotic fluid (28cm), but peri didn't see any digestive blockages in the baby, so we will just "watch it" like we do with everything else. I'm trying to stay sane during my last 8 weeks of pregnancy, and hoping all this time and effort results in a living, healthy little boy.

The Long Version: The good news is that I have a c-section date of March 9th (37 weeks according to them, 37+4 according to my LMP). It seems both just around the corner, and so far away at the same time. I had a traumatic appointment with my OB two days ago. I hadn't had a visit for 5 weeks, and I actually didn't see him the last time I was there. So, to be fair, he hadn't seen me in about 9 weeks. When the nurse took me to the room she said, "Oh, it's so nice to see you. I was thinking about you yesterday and how you were doing." My BP was good, my weight (ugh!) they did not hassle me about although I gained 10 (TEN!!!!) pounds in the past 5 weeks. Damn holidays! Threw on the doppler for a couple of seconds--read in at 130. "Looks great," she said. Dr. M came in and said, "okay, I guess it's time to schedule your c-section." Of course, I was completely excited to set a date. He said, "okay, so what about the 24th?" I must have given him a weird look, because he said, "The 24th of March. You're due March 30th." I was in such shock, my eyes welled up with tears and I said, "but I thought we had discussed 36 or 37 weeks." He said, "not unless you want an amnio." I said, "yes, yes, I thought that was the plan. Remember, my daughter died at 38.5 weeks?" By this time the tears had started squirting out of my eyes. He closed my chart and his calendar, and sheepishly said that he would call the perinatologist and work it out. I told him him, "I'm just caught completely off-guard by this. I really need for us to all be on the same page. I promise that I won't be pregnant at 38 weeks. I will take a knife to my abdomen and land myself in the E.R. by that point." He passed me a tissue and said, "we'll get this worked out." I left the office totally overwhelmed, confused, and frustrated, and completely fell to pieces. I was beyond stunned.

Flashback: When Chris and I met with this OB when I was like 6 weeks pregnant, based on Addison's birth and death, he offered up the care plan for this pregnancy. It looked something like this: More frequent monitoring, being followed closely by the perinatologist, Non-Stress Tests beginning at week 34, Amnio at 36-37 weeks and if all was well with that, delivery shortly thereafter. Now, 29 weeks into the pregnancy, this douchebag starts acting like I made the whole thing up. Trust me--I wish Addison had been a figment of my imagination. I wish I didn't live through that hell. I wish that I didn't question my every move now, and question the very ability of this baby within me to actually SEE the outside of my womb. So, I decided there were two possibilities: 1) He is changing the game plan completely; 2) He has no fucking idea who I am, and didn't even glance at my chart before entering the room to greet me. Wow. Neither option is very patient-friendly.

And after taking about an hour to compose myself (literally), I decided we would see what the perinatologist had to say. Luckily, I had an appointment with him 3 hours later, and Chris was planning to meet me there. Pretty immediately, the peri told me that he had spoken with Dr. M, and they set an amnio date for 36+9 and the c-section for the next day, assuming all looked well. I said, "he totally forgot who I was, didn't he?" He wobbled his head and, although it was evident he didn't want to throw his colleague under the bus, made it wordlessly clear that that was the case. There is more to the peri visit, but I feel a strong need to make a rant about my experiences with the so-called medical professionals I have dealt with over the past years.

My mom was a L&D nurse for about 30 years before deciding to go back to school to get her Masters degree. She is a Certified Nurse Midwife and works within an HMO wherein she does some time in the office for OB- and GYN-type issues (paps, 6 week delivery follow-ups, prenatal care, etc) and also does deliveries in a hospital setting (24 hour shifts). So she kinda knows about the business of babies--both the prenatal care, and actually delivery. She does get disgusted, at times, with how many of the OBs seem to just whip in and out of patient rooms, while the midwives give much more personalized care.

When I became pregnant with Calvin (late 2005) I was referred, by 2 co-workers, to a male OB within my insurance plan. They both loved him; I thought he was okay. At the end of the day, what the hell does an OB do anyway, unless you need a c-section? At 40+6 I cried my way into being admitted into the hospital, after being in prodromal labor for the past 2 days. Calvin wouldn't tolerate pitocin (decels with every "good" contraction), my cervix refused to dilate beyond 3cm, and I ended up with a c-section by an unknown doctor in my OB's practice. It was done under general anesthesia, by the way, because my epidural gave out on my left side, and they couldn't get a spinal in. Good times. Despite going home with a perfect baby, I had a level of mourning due to the type of delivery. I recently ran across some video of my husband, 2 of my sisters, and my mom in the nursey with Calvin during his first bath. That all happened while I was still unconscious in the recovery room. At the time, I thought the whole situation was terribly unfair, but I eventually came to terms with it.

And then I moved across the country to Georgia, and got pregnant in 2008. I was referred to a female OB by Chris' 2 cousins, who both delivered with her--one via c-section and one vaginally. She seemed very sweet, and had good bedside manner, and when the baby had no heartbeat around 10 weeks, she did the D&C. So when I got pregnant with Addison in early 2009, I decided to see her again. The care was fine (I was a very low-maintenance patient, as most of my questions were answered by my mom). All I wanted was a scheduled c-section, and to be awake for the delivery of my daughter. Jokingly, I always said (not directly to my doctor), "Can you cut a straight line? Great--I'm in!" My c-section was scheduled for 38+6. And then, a couple of weeks before the "big day," my OB noticed that I was scheduled for a day under 39 weeks. I was advised they had a new office policy wherein c-sections could not be scheduled earlier than 1 week before their due date without good cause. I was ONE DAY earlier than 39 weeks, but it didn't matter. She changed the c-section to 39+3. I cried (again), but there was nothing I could do. I ended up being a moot point because the night of 38+3 I ended up in the hospital due to decreased fetal movement. Addison was delivered the next morning via c-section, by an unknown doctor in my OB's practice, and taken to NICU. The rest is history.

When I got pregnant this time, I didn't know who to see. I didn't want to see my last female OB again, mostly because of insensitive things that were said by a few of the other OBs who did rounds in the hospital while I was still in-patient after having Addison. I felt like they were not in contact with the Neonatologist at all, and didn't really have a vested interest in what happened to Addison. They were purely concerned with making sure I felt they weren't at "fault" with what happened to her. I felt there was a lot of ass-covering going on, and it made me feel, in a roundabout way, that they would rather have me blame myself for what happened to Addision, than to even think about the POSSIBILITY that their practice was responsible for the outcome. I know there is no blame to be placed with my OB or her practice, but I couldn't tolerate how I was treated after the fact. I knew I couldn't go back there.

The nurse with the peri's office (I was followed closely with Addison because I was of "advanced maternal age"), who is sadly no longer there, referred me to the practice I am currently seeing. Dr. M had been given good reviews by his patients, he delivered at the sister hospital where I had Addison (I don't want to go to the same hospital this time), he was close, affiliated with the same peri practice, and within my insurance coverage. All that sounded good enough to me. And, again, what the hell does an OB do other than cut a straight line at c-section time? All they do is WATCH. I had a subchorionic hemorrhage. We watched. I now have an over-abundance of amniotic fluid. We will watch. The LEAST he could do is fucking glance at my chart before he walks in to see me. The patient. The one who pays his bills. I have lost faith in him, but I feel I have no choice but to continue on because I'm so close. I really hope he CAN cut a straight line.

After a horrific experience at the hospital last time, and then watching Addison die. After hearing everyone involved (and not involved) attempt to cover their ass so they don't get a lawsuit slapped on them. After reading so much about cold cap therapy and wondering, endlessly, if that would have saved her. After suffering through my own slips in referring to this baby as "she" instead of the "he" that he is. After the subchorionic hemorrhage, bleeding so much for so long, almost losing hope. After just wishing for and wanting for this baby. I'm just spent, emotionally. I want to hope, I want to feel peace that he is okay. I don't think I'll be able to feel that until he's here and I can see with my own eyes that he is healthy.