32 Weeks

I bought this shirt for John for Christmas and then decided I liked it too much to give to him!

  Look at my little minion! She's getting SO BIG!!! I seriously have no idea how women waddle around and hunt and gather or go to work or take care of other children at this stage of pregnancy! It's a challenge for me to get up from a seated position at this point! And I still have 8 weeks to go! I'm going to need a Hoveround, soon!

How I picture her flipping herself around

  Babies at 32 weeks should be starting to settle down with all of the acrobatics, according to my pregnancy books. Denali has not read my pregnancy books. She's still just as active as she has been, her movements are just more uncomfortable for me. She moved into a head-down position last week while I was in the shower. The experience was so painful that I couldn't move and I just stood there
moaning and gasping. I thought that was the end of it, but no. A few days ago she did it again! And today she started trying to get head up again, but I was able to bend over and squish her enough that she stopped. And John gave her a little talking to which seemed to help. Now she is contentedly battering my liver with her ginormous feet. Crazy little girl! As uncomfortable as her movements make me sometimes, I wouldn't trade them for the world! She's my constant companion and I'm really going to miss her when she's gone.
  We went to a haunted house in Wasilla on Saturday. I know, I know, pregnant women aren't supposed to go. But I couldn't resist. I don't scare easily and I just find haunted houses hilarious and a lot of fun. This year was no exception. I didn't get scared one time! It was a pretty good haunted house, on par with Scaremare in Lynchburg without the 3 hour wait to go in. I was surprised to note that there were a lot of dead babies. In fact, there was one room of nothing but dead babies. I wasn't offended at all. It demonstrates our society's horror over infant death. It's right up there with dismemberment and evil clowns. It isn't funny and it isn't meant to be. Halloween is about collectively laughing in the face of death and confronting our worst nightmares. Maybe that's why I enjoy haunted houses so much.
  Yesterday we went grocery shopping which just about did me in. Thank heavens for John! He pushed the cart, managed the list, unloaded the cart, and then unloaded the groceries while I put my feet up. And then he made supper. He's really quite amazing. Last week he cleaned the bathroom because I didn't want to be exposed to all of the chemicals and he mopped the kitchen floor. He just does a million little things every day to make my life easier and I appreciate it so much! I couldn't ask for a better man!
 It's a cold, windy, rainy day here in Anchorage. The kind of day that makes you want to curl up on the couch with a good book and cup of tea. But, I won't. I have water aerobics tonight and if I sit on the couch I will fall asleep and all will be lost!

31 Weeks

Yay! I finally got my laptop back from the Apple Store! I don't know what's wrong with this computer, but it has never worked properly since I received it as a graduation present. It's working better now, though!

 As you can see from the picture, I haven't been feeling the greatest this past week. I'm exhausted, short-of-breath and in some pain. I'm told this will pass in a few weeks, so, I'm just taking it easy for now. As my brother Samuel pointed out, all I have been doing lately is lying around and "incubating" Denali! That's okay- I'm glad for the time when she is my primary focus and I can just enjoy her break dancing inside me. 

  As I mentioned in a previous post, my wrists and hands had been bothering me. I assumed I had developed carpal tunnel syndrome which is common during pregnancy. I made an appointment with one of my preceptors, Dr. P, and his medical student fixed me right up using OMT! No more pain! Dr. P said I had De Quervain's tenosynovitis and not carpal tunnel syndrome. So much for "physician, heal thyself", right?

  I made a dentist appointment as well as my teeth had been bothering me. Apparently I now have two fractured teeth and eight cavities. This has occurred since June when I had a molar extracted. It's very distressing to me as I am very particular about my oral hygiene and always have been. I brush my teeth three times a day and floss every night. But no matter what I do, my poor teeth just keep decaying! I asked the dentist if he thought it was pregnancy-related and he said I did not have the pattern of decay he normally sees in pregnancy. He couldn't help me, so, I made an appointment with another dentist. We'll see what he has to say, but I'm sure he won't touch me while I'm pregnant, either. By the time Denali is here, I will need dentures! The dentist I saw did give me a little lecture about how my tooth decay is hurting Denali.  There's nothing I can really do about it, though. 

  No word yet on getting any financial assistance. John's parents went ahead and got their tickets. I feel bad about them having to do that. I don't know why, but I feel a need do this ourselves. I feel like bringing her family here is something we can do for Denali when there really isn't much else we can do for her. I suppose, them being here is what really counts and it doesn't matter how it happens. And it's something her grandparents can do for her. I am so glad our families are coming! Having the hope that she will arrive and depart surrounded by people who love her is all I have to hope for some days. Sweet girl, so many people love you, do you know that?

  I was looking at some of Denali's pictures the other day and I noticed that she has apparently joined the Dark Side and become a Sith Lord!

 

  Can you see it? It took John a while. It gave me a good laugh!  John overheard me asking her why she had given into hate and joined the Dark Side and he very adamantly told me that she had not given into hate! I guess she is just dressing up for Halloween? The pictures actually show her yawning and her cute little nose and mouth! I think she has Daddy's nose and my lips. Adorable!

 Speaking of Star Wars, my brother Derek and I have an extensive Star Wars collection that we started in the early 90's. Some of our collection is quite valuable now. Unfortunately, Derek and I have been estranged for almost two years. The other day Derek told our mom that he wanted to sell the collection and donate the money to Anencephaly research. Mom told me about it and I was really touched by his generosity and his caring about his niece. I hate to be cliche, but I'm glad that Denali has opened the communication lines with him. I don't know that our relationship can be mended, but it's a start. Mom told me that Derek is worried about his chances of having a baby with anencephaly because his wife's sister also had a daughter with anen. Derek's only two little nieces both have anencephaly. It's hard to imagine.

  Some days, I still cannot comprehend how this has happened to us. It's like my ultimate worst nightmare has come true. A memory surfaced the other day while I was thinking about it. My dad started nursing school when I was in high school and I used to like to read his textbooks because I was obsessed with all things medical. I was reading his mother-baby textbook when I came across a section on how to handle it when a baby dies during or shortly after birth. I was horrified by the thought that babies die but also by some of the nursing aspects. The textbook said the nurse should offer to let the parents hold the dead baby and take pictures with it, etc. To my teenage mind, that was macabre beyond comprehension. And yet, here I am, planning on having a photographer who volunteers to take portraits of dead babies (such a blessing that there are people willing to do such a difficult, but important task) be at my daughter's birth. Unbelievable. 

  I feel like my mind has been cultivated all these years for just this time. I'm so thankful for it because so many of the women who have experienced anencephaly had no clue that it was even a possibility. The shock and horror that they have experienced is pitiful. My heart breaks for us all. 

  Good grief, I am depressing myself! Time to do something fun!  Water aerobics was cancelled for tonight, so, Denali and I are going to go work on our Halloween costume! Thank you for your continued thoughts and prayers!

Request

  John and I have an issue that we really need lifted up in your thoughts and prayers. For us, family is our number one priority and it's really important to us that Denali meet her family and vice versa. We want her brief life to be spent surrounded by people who love and cherish her. However, getting our families to Alaska from Virginia and North Dakota is extremely expensive and will put a financial burden on us and our families. Quite frankly, we can't afford it. We have been talking to various non-profit organizations trying to find out if assistance is available for us. So far,  we have not had any success.  If anyone has any suggestions, please feel free to share them!
   I know that the situation will work out somehow and our families will be able to meet Denali. We just don't know how, yet. We just really, really need everyone to pray and think about the situation and I know our request will be answered! Thank you!

Monthly Survey

How far along? 30 Weeks
Maternity clothes? Nothing but
Stretch marks? Nothing too dramatic. A few here and there.
Sleep: It's getting tougher because I have to get up so often
Best moment this week: Taking Denali to the zoo!
Miss Anything? My family

Movement: Non-stop!
Food cravings: Morningstar Farms veggie corn dogs with spicy brown mustard!
Anything making you queasy or sick: Veggies! I can't eat any of them anymore without paying for it with severe GI cramping :(
Have you started to show yet: If I were to go skinny dipping (chunky dunking) in Turnagain Arm, I would be mistaken for a Beluga Whale
Gender prediction: Still a girl
Labor Signs: No, thank goodness!
Belly Button in or out? In

Happy or Moody most of the time: Happy, actually. I've been in a pretty good mood.
Looking forward to: Going to the Haunted House and Halloween!

Kellen

Today, October 15th, is Pregnancy and Infant Loss Remembrance Day. Today we remember all the babies whose lives were too short. One out of four women have lost a baby and I am one of them. Here's my story.

  After years of expensive, painful procedures I finally became pregnant via third-party reproduction in September 2011. That in itself was quite an accomplishment as fertility treatment is a grueling experience in the best of circumstances, but I was in medical school and living 5 hours away from my husband and fertility clinic. After the pregnancy was confirmed, my reproductive endocrinologist wanted me to have my hcG levels checked to ensure the pregnancy was healthy. I was three weeks into an ED rotation at the time and stopped by the lab to have my blood drawn. I explained to the attending that I was working with that day that I was pregnant and anxiously awaiting the test results. She offered to look them up for me. She did, and she said, "Oh, well that's not good." I looked at the screen and saw that my hcG levels were too low and knew that my baby had died. The attending then nonchalantly told me to go see a patient and walked away. I stood there for a minute, trying to pull myself together and then ran for the bathroom were I completely fell apart. After a few minutes, I was able to walk out of the bathroom and I stopped a nurse and asked her to tell the attending that I had to go home. When I got home, I called my regional dean and told her what had happened. She told me to take two weeks off and she would take care of the rotation. I don't remember much after that. I was in my bedroom and it was dark and I thought I was dying. My husband wouldn't come get me, but his cousin and my mom came and picked me up later that night. I remember walking into McDonald's in my pajamas and not being able to comprehend what was going on around me. I really don't remember much about the next week. I was back at my home in Virginia, but I don't think I got out of bed. At one point my doctor asked me to go to the ED to be evaluated for an ectopic pregnancy. I was cramping badly and was given Dilaudid. I drifted off into ecstasy and was able to rest for the first time. After about a week and a half I started actually miscarrying and the numbness wore off. I was in physical as well as emotional pain. I had no desire to continue living. I spent a weekend with my friend Laura, my brother and his girlfriend and felt a little better after that and I returned to West Virginia to start my OB/GYN rotation.
  I found out a few months later that my preceptor for the ED rotation failed me for walking out of the rotation even though he had told me to my face that he understood what had happened and that he would pass me. Had I developed pancreatitis or something like that, I don't think he would have been able to get away with failing me. But, at the time, I received no support from the school. The failure stood. Eventually, I repeated the rotation and the two grades were averaged. I really feel like it kept me from getting into an Emergency Medicine residency. That worked out okay, but I believe that I was discriminated against.
  By January, my marriage that had been worn thin by physical separation and infertility had completely disintegrated and my husband had filed for divorce. Those were dark days for me and I didn't know if I would be able to make it through them or not. I was in the worst depression of my life. I don't know how I continued with my rotations, but I never missed a day. I went through the motions of living, but I was broken. I was living five hours away from my family and had no friends or support system there.
  I didn't know how to mourn for my lost child. I felt that he was a boy and I named him Kellen, a name I had never even considered but had come to me. I felt so guilty for not being a good enough mother to keep him alive and I apologized to him over and over again. I can't explain what it was like to know that you held life inside of you and to feel it disappear.
  Losing Kellen prepared me for Denali. When she was diagnosed with anencephaly my heart broke, but it broke along already established fault lines. The grief that descended felt like a familiar coat wrapping around me. And I know that next year I will have a second candle to light for my little girl.
  I invite everyone to join in the International Wave of Light this evening at 7pm local time. If we all light a candle we can create a continuous wave of light around the entire world to honor our babies who have gone too soon!

30 Weeks

Denali and the Harbor Seal

  What a busy week/weekend this has been! Whew! The busyness started out on Wednesday when I decided that Denali and I needed to check out the water aerobics class at the base gym. We had such a great time! The instructor is really hard core for water aerobics and I was definitely getting my heart rate up, but I was keeping up with the rest of the class. About halfway through the class the instructor told me to slow down and "Only low impact for you! We don't want to have a baby in this pool!" So, I slowed it down. It felt really great to get some exercise without feeling so awkward. Friday I went back
to the class and again got a good workout. There was free swim after the class and John came by after work and we swam until closing, two hours later. We had a really great time just hanging out and splashing around. Denali seemed to think I don't swim very well because she did flutter kicks with me every time I started swimming! It was like she was trying to propel me along! Normally she settles down when I walk, so I thought it was amusing.
  Saturday morning I woke up in excruciating pain. My whole body ached like I had the flu, but my wrists were especially painful. I started crying and John massaged my wrists until the pain receded a bit.  I guess I overdid it with swimming Friday night! I took some Tylenol and managed to feel a bit better, but I was still in pain. John and I had planned on going to play a game with a club that he found, but I decided to skip. Instead, I dropped him off and went to the Scandanavian bazaar and a stopped in a little shop I've been wanting to visit. That was about it for me and I went home, had a nap and read until it was time to pick John up.
  Today we decided to go to the Alaska Zoo! We had never been before. John and I agreed that of all the animals, we enjoyed the Harbor Seals the most. I could set up a chair and watch them for hours! They are just dog mermaids and they crack me up! We also saw otters, musk ox, brown bears, black bears and a polar bear! (If you're interested, you can watch the polar bears live here) Needless to say, we enjoyed ourselves and now I'm exhausted!

Denali petting a seal

They're ridiculous!

  After the zoo we went for a drive along Turnagain Arm. It was gorgeous, as always. Today, the termination dust was creeping down the mountains towards Anchorage and it made a pretty contrast to the fall foliage. We drove by Potter's Marsh and saw Trumpeter Swans for the first time this year! Then we stopped at Bird Point where I finally saw a Beluga Whale! Too bad it was an inorganic version. 

Termination Dust

The only Beluga we'll ever see, I'm afraid

29 Weeks

  29 weeks! I can't believe it! I must be looking hugely pregnant because a lady offered me her seat while we were waiting for a table today at a restaurant! I was quite grateful and took her seat without hesitation! After lunch we went to Target and a lady stopped me and told me I was beautiful and the cashier told me I was gorgeous! I guess I have my pregnant glow going on, lol!
   Yesterday we decorated the house for Halloween! I don't like the gory, horror things, but I do like cute ghosts, pumpkins, and things like that. We're the only house I've seen around Anchorage that's
actually decorated, but I think it turned out quite nice! We had a lot of fun making some of the decorations and putting them up!
  Stage 1 of nesting is complete! After two weeks of deliberating, John and I finally found some curtains that we both found suitable for the living room! John put them up while Denali and I supervised. We discovered that the windows in the house are actually crooked and that required some adjusting. But they're up and they look great! Next we have to find a rug that we both like.
  We went to the Alaska Made Festival yesterday. Imagine a whole stadium with crafts and things all made in Alaska! For my Cville

friends, it was like Martha's Market with a lot of moose antlers. My feet hurt after about an hour and I had to rest, but that did not deter me from more shopping. I saw lots of adorable baby things and one seller cornered me and tried to sell me some cute things. It was difficult, but I didn't tell her why I wasn't interested in what she was selling. We did a little Christmas shopping and we bought a Christmas ornament for ourselves. I collect snowmen and I had been looking for a personalized ornament!
  Today we visited the base chapel. I really enjoyed the service, especially because some of the music was familiar to me. I think we are going to visit a few more churches in the coming weeks.    Just to clear things up, we did not have to leave the previous church because of anything to do with Denali. In fact, we didn't necessarily have to leave, but, sometimes it's best just to shake the dust off your feet and move on! It's unfortunate that it happened during this difficult time, but when it rains it pours. I'm reminded of why I stopped going to church years ago. However, it was our intention to raise Denali in the Catholic faith so I will continue to go so that she can spend as much time in church with her daddy as possible!
  This morning, John mentioned something to me about a catheter. It took me a few minutes to realize he was suggesting I put in a foley so I'm not getting up all night! I guess I kept waking him up. Last night was particularly bad because I drank a bit of Diet Dr. Pepper right before bed and I think I was up every 30 minutes! Denali apparently likes where she's at because she hasn't changed position in a few days and it's so much fun to kick mommy's bladder! If I can ever figure out how to post video on here you will be able to see how vigorously she kicks it! It's pretty cute, actually! Especially at 3AM and I'm in the bathroom for the hundredth time that night...

OB Appointment Update

Just got back from our ultrasound and doctor's appointment. I'm sorry to say that Denali was uncooperative and we did not get many good pictures, but we did get some great video! She was in a transverse lie with her head on the L and her bottom on the R. Her feet were actively kicking my bladder and cervix, which did not surprise me at all!
  It does look like Denali is deteriorating neurologically. Her hands are tightly clenched in fists, which is a bad sign. I don't specifically remember seeing her open her hands before, but I had asked about clenched fists and rocker bottom feet and was told that she did not have them in the past.  The only part of her brain that is present is the cerebellum. Everything else is gone. The sonographer, Scott, had seen anencephaly before and he said that she was "severe". I was expecting this to happen, but it still hit me hard and I was fighting tears. She is also on the small side, in the 25th percentile according to her abdominal circumference. I was surprised by that! John and I had a little wager going on about her weight. He said that she would be three pounds and I said two pounds. John won! She's 2 lbs, 12ozs! All of my books say that's on the high side of normal for even a normal baby, so, I'm not sure. She is what she is, I guess!
  For the first time I find myself questioning our decision to continue to term. I've read some stories from parent's who said that once they saw how sick their babies were they decided it would be kinder to let them die. I understand that. Denali is very sick and I wonder if it would be a kindness just to let her go. But, at the same time, she isn't suffering and she's very much alive. I enjoy feeling her move and I'm enjoying being pregnant. I'm healthy and we're just hanging out. I don't see any good reason to change the plan now.
  We did discuss our birth options with Dr. O today. John is concerned about my health having a section. Dr. O said that if we wanted to try to labor and see if she could be born in her amniotic sac, that would be okay and then we could do a section if anything changed. That sounds like a reasonable plan to me. She also said that if we do a section she will sew me up so that I can try for a VBAC if we decide to get pregnant again. Also fine with me! Dr. O very much understands our desire to see and hold our little girl alive and intact and I so appreciate that!
  I seem to be in good health and I was happy to hear that I passed my oral glucose tolerance test, with "flying colors" as Dr. O put it. My glucose was 82mg/dL and it needed to be <180mg/dL! Whoohoo! I was convinced I would develop gestational diabetes, but so far so good! My hemoglobin was 11-something and my hematocrit was good. My fundal height was around 30, but I don't have polyhydramnios according to the ultrasound. I did lose 3 pounds, which is concerning to me. As one of my preceptors used to say, "that's a bowel movement" but I feel like I should have maintained or gained at least something. I'm eating a LOT (other than veggies)! And I did ask about the veggie issue and Dr O said my nutrition was good so she didn't seem concerned.
  I forgot to mention in my last post that I had spoken with the genetic counselor. She confirmed that I do have a mutation on the MTHFR gene, but that I am also homozygous for a variant on the MTRR gene. She seemed to think that the MTHFR mutation was insignificant, but that the MTRR variant presented a small increase in the risk for NTDs. She advised mega doses of folic acid for three months before ever trying to conceive again, which I will certainly do. I'm really confused about all of this and the more I read, the more confused I become. I understand the biochem and that's about it. I will try to leave the rest for the experts and just do what they say to do!
  We did have a blow yesterday and John and I made the decision to find another church to attend. I was planning on having the priest baptize Denali and having her funeral at the church, but that doesn't look like it's going to happen. It's a difficult, unfair situation and it really upset us.  Please keep John in your thoughts and prayers as he is really struggling with it. It was really exactly what he needed on top of everything else he's dealing with. :/
  Okay, now I'm going to try to get some video uploaded for your viewing pleasure! Wish me luck!

28 Weeks

  This post is a bit late because, as some of you may know, we ran out of internet last month. Yes, Alaska is truly the last frontier and unlimited internet is a luxury and not a guarantee. But, it's a new month and I will do my very best not to binge-watch Breaking Bad on Netflix this time!
  As you can see from the picture, I got my hair did last Saturday. John and I were up early on Saturday morning and he went in for a haircut on base. I had been wanting/desperately needing a haircut, but my hairdresser just had a (gorgeous) baby girl! So, I decided to get my hair cut at the base salon. The hairdresser was fairly young and started by asking me the standard pregnancy questions of what I was having, when am I due, etc. I answered the questions without saying anything about Denali's condition. Then, she surprised me by asking me what I was most afraid of as a parent. And so I told her that my greatest fear was that my daughter would die before I get to hold her in my arms and explained why. She surprised me again by not saying anything cliched. She simply said she was sorry and that she would keep us in her thoughts. I was really impressed. As she started cutting my hair, she told me that I had patches of gray and then told me it was understandable because I was under so much stress. I just really appreciated her straightforward handling of the situation and being able to be totally honest with a stranger. And I thought my hair looked really cute. John liked it, too!
  John started on day-shift this week! I never thought I would be happy about that as I tend to be a night owl, but I am! I think we were both getting burned out by no sunshine and the inability to get much done.  I've enjoyed being able to drop him off and do some things by myself. I signed up for the foot-washing ministry at church. Once a month a group goes to the homeless shelter to do foot care. Well, I have experience in foot care after a rotation with a podiatrist and several stints in wound clinics! Obviously I can't do much, but I can tell when someone is in serious trouble and needs further attention and I can dress a wound. It feels good to be doing something useful again! I'm also considering volunteering at the hospital in the CCU. All I would be doing is patient and family advocacy, but again, it's something useful. And I found a water aerobics class that I'd like to do. So, John and I both are happy that he's off night-shift!
  I'm actually itching to get a job. This is the longest I have been unemployed since I've been old enough to work. I count full-time school as work, but I held a job through high-school and undergrad. I should really be grateful that I'm in a position where I don't have to work, but depending on John to support me goes against my grain. I suppose this situation is a lesson in humility and allowing others to help me when I need it. The worst thing about being broke is not being able to give anyone much for Christmas. I shop for special gifts all year and it's the highlight of my year to give them on Christmas. John told me that he would help me out this year, but I quickly pictured the conversation from Christmas Vacation where Cousin Eddie tells Clark to buy himself something "real nice" with his own money. Hmmmmm....
  Denali learned a new trick this week- it's called "kick Mama's sciatic nerve"! Fortunately, she has only done it once, but thank goodness I was sitting down because I would have fallen otherwise! That hurt! And on Monday I was at the gym waiting after our workout while John changed into his uniform. I sat down on a bench and had a book perched on my belly. A young guy came and sat on the bench, but he looked uncomfortable and scrunched up against the opposite end. About that time, Denali decided that she didn't like my book  where it was and she kicked it, hard. It went flying! The guy gave me the funniest look! I laughed and laughed about that!
  This past weekend was absolutely gorgeous and John and I decided to eat our Sunday lunch outside on the deck, a rare treat in Anchorage. After lunch, I decided to doze in my chair and make some Vitamin D. To get maximum exposure, I pulled up my shirt. As soon as the sun hit me, Denali rotated around to face outwards. I can tell which way she is facing based on where she has her hands. I know that she's blind, but maybe she has some primitive light sensation? Anyway, I was excited and I hope that she could sense the light! Any interaction she has with her environment I consider a victory!
  Another new development this week is my inability to tolerate vegetables. I've been a vegetarian for almost 16 years and I try really hard to follow Michael Pollan's maxim to "[e]at food. Not too much. Mostly plants." Last week I popped a bag of steamer veggies in the microwave for supper. After I ate them I became violently ill and suffered for the rest of the night with GI cramps. I thought it was maybe a fluke, but it's happened twice since. I'm not sure what I'm going to eat if that keeps up for the remainder of the pregnancy! I have an OB appointment on Friday, so I will ask Dr. O about it then.
  Speaking of the OB appointment, we are having an ultrasound on Friday! I'm so excited! I can't wait to see Denali again and see how big she's getting! I will try to post pictures ASAP!