23 Weeks

I feel a little weird taking a picture with a 70 pound cabbage...

  I can't believe how quickly time is flying! 23 weeks already! Less than a month left in my 2nd trimester! Slow down, time!
  We took Denali to the state fair yesterday and had a great time! The big attraction at the fair is the GIANT vegetables that grow in Alaska's looong summer days. The cabbages are just ridiculous, as you can see from the picture. Can you imagine the cole slaw you could make from that thing?! My mouth is watering just thinking about it...Anyway, I love cabbage and John dislikes it. It made me wonder how Denali would have felt about it and other veggies. It had been our intention to raise her veggie like me until she was old enough to make an informed decision. I guess we will never know.

   We also did all of the other typical fair things. We saw the farm animals. I made sure to pet as many as I could and pay attention to their texture. I also told Denali the sounds they make. That sounds a little nutty to me, but it feels right to tell her these things. We went on the ferris wheel and, of course, we ate disgusting fair food. That was the best part, in my opinion! Yummm!
  All of that excitement wore me out and I fell asleep on the drive back. When we got home, I was having a hard time getting my socks off. When I finally managed to pry them away, I saw why. Hello swelling, my old friend! Ouch! Totally worth it, though!

  This time last year, I had just gotten to Alaska and we were wrapping up one of the most wonderful weeks of my entire life. We stopped at the fair on our way to Fairbanks to visit some of John's family and then headed North. We spent the night in Denali National Park and it was that trip that inspired us to give Denali her name. I think if you had told me last year that she would be here already I would have called you a liar, ha ha! Things never work out how and when you plan them (especially with babies, it seems) but they work out. It's been such a crazy year and so much has happened since then! I can honestly say that my life is fuller, richer, more joyful and more painful than I could have ever imagined then and the vast majority of that is because of John and our little girl. I love them more than I ever thought possible!
  In other news, I have been absolutely exhausted lately. On Thursday, I slept all day. Once John left for work, I fell asleep on the couch, woke up once to eat, and then fell back to sleep until John got home the next morning. And then I went right back to sleep until about 8pm! That is not typical of me at all. I haven't been sleeping consistently or all that well recently and I think it finally just caught up with me. I'm still tired, though! Even after all of that!
  A lady that I met in a Facebook support group sent me a book called A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief. I received it yesterday and it has a lot of information that I wanted but is difficult to find. As I read some of it, I was struck by how many couples faced negative and downright hostile reactions from their providers about their decision to carry to term. John and I have been so fortunate to have received nothing but support from our doctors and their staff! It's unbelievable. Not one single person has criticized us, told us we were wasting our time or anything like that. Denali has been treated like a baby and not just a diagnosis. Until my dying day I will be so thankful for that!
  Well, that's all for now. I guess I should go do something productive.

Trip to the Hospital! Warning: May Contain TMI

   Last night I may have made a complete idiot of myself. It was around 5pm and John woke me up because he was going to Subway and he wanted to know if I wanted anything. After he left, I tried to go back to sleep, but I couldn't because I was having some cramping. Nothing too serious, it just felt like menstrual cramps. I got up to go to the bathroom and I was bleeding. Cramps + Bleeding + 22 weeks pregnant = Bad. I called Mom and asked her what she thought. She said she didn't think I was in labor and that I should call my doctor. I said I wanted to wait and see what happened. John came back and we ate and I got in the shower. Still bleeding. Since it had been about two hours, I told him to go ahead and call Dr. O. He did and she told us to go to Labor & Delivery triage. When we got to the hospital, my pain was about a 2-3 and Denali was kicking furiously. We got checked in and the nurse had me get into a gown and get a urine sample. When I looked at the urine, I became suspicious about the origin of the bleeding. It looked like trash and I started wondering if I maybe had a UTI. The nurse checked Denali and her heart rate was fine and she was moving a lot. She does not like being monitored and she kicked the (what is that thing called?) that had been strapped to me repeatedly! I wasn't having contractions at all, which was a relief. The doctor came in and said that I did have blood in my urine and some protein as well, but no bacteria. I was not having any flank pain and I wasn't febrile, so he didn't think it was pyelonephritis, but he got a CBC, ESR and CMP just to check. He checked my cervix (dear heavens that hurts!) and it was "firm and closed". He said that I had three options: 1) Go home 2) Be admitted 3) Be induced. I told him I wanted to go home and he said we could decide when my bloodwork came back. I thought it was odd that he offered to induce me. Maybe he thought I wanted to be in labor? I'm not sure. Anyway, my booodwork came back mostly normal, with a slight L shift. I was sick all weekend, so that wasn't too surprising. We concluded that I probably have a kidney stone. He didn't want to do any studies because I'm pregnant and I was okay with that. He offered to admit me again, but I wasn't interested. If I have a stone and it gets painful I will come back!
  I thought the whole thing was rather bizarre. Asymptomatic gross hematuria? Kidney stone? I guess it's the most obvious conclusion. Now I'm kind of wondering if the sucker is going to get stuck and cause excruciating pain any time soon. I will deal with that when and if it happens, I guess. For now, I'm still having a little cramping, but the bleeding has stopped.
  I do kind of feel like a paranoid moron running to the doctor. But, it is very difficult to tell the origin of  bleeding in women. And maybe I have the right to a little paranoia. I've never been this pregnant before and it's not a normal pregnancy. I'm still embarrassed, though. I am happy that Denali is okay for now!

Denali at 21 Weeks

She's my sweet little thing, she's my pride and joy, she's my sweet little baby...

Sweet girl

Saluting!

Daddy's nose!

Still a girl! 

Little Feets!

Perfect little body!

22 Weeks

Brace yourselves, a loooong post is coming!

Baby's first Segway ride!

 This has been a good weekend! On Friday we went to the Alaska Greek Festival and had a good time. Unfortunately, I started coming down with some GI issue and I couldn't even finish my piece of baklava!

I was very disappointed because I love Greek food! But we had a good time walking around and seeing the sights.They had a bouncy castle and John wanted to take Denali in for a bounce. I was too nervous to go in, though. I'm afraid I'm going to fall and go into premature labor, or something.
  Saturday I was still feeling crummy, but finally decided to go to the mall. I've been needing an article of clothing and the only place that carried it in town is Motherhood Maternity. As I mentioned before, I really didn't want to go in there, and I've been putting it off. I steeled myself and went in anyway. It was pretty crowded so I didn't get any questions from the staff while I was shopping. When we went to check out, the cashier put started to put an informational booklet about cord blood banking in the bag and I freaked out. I told her I didn't want any information as my baby has a fatal diagnosis. She said she was sorry and did not proceed with the normal onslaught of questions and promotions. I was a bit drained emotionally after that, but I wanted to stop in the Hallmark store to see the new Christmas ornaments. John left me for a few minutes and I started crying right there looking at ornaments. I felt like an idiot! At least I'm pregnant and people will attribute my craziness to hormones, I hope. John came back and we left the mall. I was tired, emotional, cranky, and my feet were killing me. At which point John announced that we were going on a Segway tour of Anchorage. He's been wanting to go on this tour for a year now and I reluctantly gave in. The rain from earlier in the day had cleared up and it was actually warm out. As luck would have it, we walked in right as a tour was getting started (you normally need reservations)! We watched a training video and then we had a quick orientation session with the Segways. I'm a cautious person at my best, but right now I'm downright paranoid. And my balance is really off, so, I had some trouble getting started. But once I got the hang

of it, it was really easy and really, really fun! Our tour guide was awesome and we zipped around Anchorage just having a blast! We stopped on the Coastal Trail and...we could actually see Denali!!! I couldn't believe we could see it since it had been raining earlier and it's difficult to make out on the clearest days (it's 130 miles away). The tour guide started describing Denali and how it protects interior Alaska from incoming severe weather and how it's the biggest mountain in North America. I thought to myself that we definitely chose the right name for our little girl! The qualities that people attribute to Denali are qualities that I want her to have. I want her to be strong and protect others from severe weather. I want her to stand steadfast throughout changes that shape the landscape all around her. I want her to know that she is strong and that every time I see her I'm struck dumb with a sense of awe at her beauty. Although we will never know what type of person she would have been, I sense that her soul  is mighty!
  After we finished the Segway tour, we went to John's co-worker's house to play a game, eat pizza and get some animal therapy. It had started raining again while we were there and as we left the rain cleared up and there was a double rainbow in the sky!
  On Friday we did see the perinatologist, Dr. I. This was the first time we met him. We had an ultrasound, which was awesome! I so enjoy watching Denali moving around and doing her thing! Both John and I felt like she was more cooperative this time. She moved around a lot, but we got some good looks at her face. And, as the sonographer pointed out, she is getting fatter and looking less skeletal and more like a newborn! She weighs 12 oz now! She's a can of soda!
  We had some questions for Dr. I about our chances of a recurrence. He said that he thought a recurrence was unlikely and that having a tubal ligation was "extreme". However, he said that we should wait at least 6 months to a year before trying again and that I should lose weight. Having a BMI greater than 30 increases the risk of anencephaly by 50%! I take umbrage with that data. Given the obesity epidemic in the US, you would think that the incidence of anencephaly would increase proportionally. However, I have not found that to be the case. According to CDC Surveillance reports, the incidence is decreasing! The report did not look at the incidence among obese persons specifically, but I would have still expected an increase overall.
  So, if we do decide to try to get pregnant again (which is a BIG if) I have got to lose some weight. Not only will I have to lose pregnancy weight, but also enough weight to get my BMI below 30. I'm in no way morbidly obese; my pre-pregnancy BMI was 33. So that means an additional 25 pounds. I have no idea how I'm going to do that! I've lost 30 pounds in the last two years, but I've been at a plateau for over a year. Trying to lose weight during my intern year is going to be next to impossible. I guess I will give it a try.

Thoughts About the Future

   I need to stop reading journal articles, they don't help. I'm trying to understand as much about anencephaly as possible, but, no one really knows anything. I read two things today that concerned me:

1. Maternal obesity is a definite factor in anencephaly. This makes me so sad. If I had been looking for a way to blame myself (which I'm not) then that would be the perfect reason. If my weight were the cause, I would lose it because I see so many women who are morbidly obese and don't even care who have normal, healthy children. I've struggled with my metabolism my entire life and I exercise and eat a very healthy diet and it would really be unfair if that is the cause of Denali's anencephaly. But, there it is.
2. The risk of a recurrence of anencephaly with a subsequent pregnancy is 3-5%, in general. I thought those odds weren't too bad until I read a journal article that described the risk as being the same as taking thalidomide! Everyone remember that wonder drug? It was given to women in the  1950's and '60's for morning sickness. It caused major birth defects and led to an epidemic of "flipper babies". It was removed from the market in 1962. I don't think there is a sane woman on this planet who would willingly take thalidomide during pregnancy. But, taking thalidomide has the exact same risk of birth defects as having a child after having an anencephalic baby! That blew my mind.

   All of that led me to thinking about my future fertility. For ten years or so it has been my greatest desire to have children. I want so badly to bring home a healthy child! The question that I'm asking myself now is, would it be completely irresponsible of me to ever become pregnant again, knowing the risks? I could not live with myself if this happened to another child. I suppose that's a question for our genetic counselor, but I think she will give me the same information that I already have. 

  For a few weeks now, I've had it in the back of my mind to have a tubal ligation during the C-section. Willingly giving up my fertility would be excruciatingly painful, but worth it to protect other children from dying. And as John pointed out, at 30 years old I probably only had another good five years of fertility anyway. 

  All of this will depend on the results of mine and Denali's genetic tests, of course. If Denali has a chromosomal abnormality, such as Trisomy 18 (which is associated with anencephaly) then I would be more comfortable trying to become pregnant again. If I don't have some sort of balanced translocation or something that would cause future children to be at risk for the same abnormality, that is. If, however, it turns out that I have a MTHFR mutation, then I will strongly consider tubal ligation. The risk of recurrence in that case is too high. If no abnormalities are found at all, then I'm not sure what I will do. It comes back to the 3-5% risk of recurrence. 

Monthly Survey

How far along? 21 weeks
Maternity clothes? Yes. I can't fit into anything else. Except my Forever Lazy, for which I'm thankful!
Stretch marks? Nope. I've lost weight, though, so I wasn't expecting any
Sleep: Sucks. I can't turn my mind off and then I have nightmares.
Best moment this week: Hearing Denali's heartbeat, of course.
Miss Anything? I miss my family right now.

Movement: Constantly. I love it!
Food cravings: Coke and Cherry ICEE mixed together. Same as last month.
Anything making you queasy or sick: Vienna Sausages and John's breath after he's been eating ramen noodles
Have you started to show yet: Yep
Gender prediction: It's a girl
Labor Signs: I thought I was having contractions last week and got worried, but they went away after about 18 hrs.
Belly Button in or out? In

Happy or Moody most of the time: Sad for most of the past week
Looking forward to: Our next ultrasound and the Alaska State Fair

21 Weeks

  Well, I managed to get up, get dressed and make it to church today! I feel like I accomplished something, considering I have been beyond a slug this week.
  My sweetheart is getting bigger every minute! In addition to little feet, I can feel some bony little elbows, too. At least, I think that's what they are. She and I have started playing hide and seek this week. Denali will be on one side and start moving around and I will squish her and poke her until she scoots away. And then she will start moving wherever she went to and I will start poking her again until she moves to the next spot. It's probably very annoying to her, but hey, what are parents for? I'm scared I'm going to poke her in her little head, but, hopefully there's enough cushioning that I won't do any damage. Anyway, it cracks me up. And I'm still waiting to feel hiccups!
  I went in early with John and sat through choir practice. John came over afterwards and asked me if I recognized any of the songs the choir had been practicing. I said that I knew one of them. (I should mention that I was raised Baptist and John is Catholic, so, most of the time I'm completely lost during Mass.) John was concerned because the choir director told him that the song in question was a "Baptist funeral song". He was worried that I wouldn't handle it well when the congregation sang it. The song was "It is Well with My Soul"(For those of you not familiar with the song, I've attached a hyperlink to the lyrics and the story behind them). To me, that song has always been comforting. It's about surrendering control over whatever circumstances life throws at you. The way I see it, you may as well, because there's nothing you can do about it anyway. It reminds me that I have zero control over what happens in my life and I shouldn't stress about it (though so often I do).
  Last Friday, two teenage girls were killed by a drunk driver while they were walking home in Anchorage. This is the second time the exact same thing has happened recently! It's such a horrible tragedy. And there's tragedy all around us. Which reminds me, again, that we are not in control. The therapist that I met with last week hit the nail on the head when she told me that I wasn't feeling safe. Any illusion of safety has been ripped away from me. I have been feeling very vulnerable lately. I'm constantly worrying that something is going to happen to my loved ones. I'm really not a worrier, so this was something new to me. But the threat is not new. I guess we just have to ignore it as we go about our daily lives or we would all go insane (and the makers of Xanax would rule the world).

I've always maintained someone should shoot that thing with feathers!

  Another thing that I have been thinking about this week- hope. I'm thankful that I don't have any. I don't believe in miracles and I'm not expecting one. I know what the outcome is going to be. I'm reading a book, I Will Carry You by Angie Smith. It's about a Christian woman who carried her terminally ill daughter to term. Throughout the pregnancy, her family and friends prayed for healing and sincerely expected God to work a miracle. They were very disappointed when their daughter was born and, like the doctors had said, died shortly thereafter. They were angry with God for not saving their daughter. I think they set themselves up for even more grief. They had hope in a hopeless situation and were crushed when they were wrong. I'm so thankful that ours is a hopeless situation. I cannot imagine the pain of having hope. For instance, watching your child battle an illness that may or may not kill them. The hope would be the worst part. I'm comforted by knowing what the outcome is going to be and being able to prepare for it.

Keepsake Box

We just received our Keepsake Box from String of Pearls! I'm overwhelmed by their kindness! They sent a 3D plaster kit, a clay kit for hand and foot molds, a ceramic ornament with paint for hand and foot prints, a sweet hat and booties and lots of other, thoughtful items that we will treasure! They do all of this for free for families carrying a baby with a terminal diagnosis. The director, Laura, has emailed me several times just to check on us. Please go by their website and check them out!

Chain of Events

  I've been thinking about how I ended up in this place. It seems that everything in my life has been going wrong for several years now and it's been one bad thing after another. I was lamenting my misfortunes, but then it hit me that everything has kind of worked out to get me here:
  Was falsely accused of and charged with assault and battery by a woman who was jealous of me (and completely insane) -> I was found not guilty of the charges (because they were lies) -> The verdict was entered incorrectly and I was suspended from medical school last August because I was on parole -> It took me a month to get that mess cleared up and back into school -> I had to graduate a month late because I missed that month of rotations -> I couldn't start residency on time because I still had to finish up some rotations. That gave me a month to come back to Alaska for a little unexpected vacation ->  I paid for Mom and my brother to come visit AK last spring. Mom decided not to come -> Mom and Samuel came up with me for my unexpected vacation -> I was with John and Mom and Samuel when we received the diagnosis.
  I was really, really angry and embarrassed about the whole situation with me getting suspended from school and starting residency off-cycle. I was also really angry about Mom and Samuel not coming up here this spring. But, what if none of that had happened? I would have graduated on time and started residency. And, I would have gotten the diagnosis while I was all by myself. So, even though the situation has been bad, everything has worked out okay in the end so far.
  We had a regular OB appointment yesterday with Dr. O. My fundal height measured 21cm, whereas I was measuring at 25cm two weeks ago. I'm not swelling anymore and I'm less short of breath! Thank goodness for that! Dr. O had trouble locating Denali's heartbeat with the Doppler, but said she wasn't worried because she could hear her moving. I also was not worried because I could feel her kicking at the Doppler! She does not like having her space invaded! (But I poke her all the time and she doesn't seem to mind) Finally, I told Dr. O where I could feel her and she found her heartbeat. It was 147, so, holding steady and doing great! I used to think it sounded really crazy when parents of anencephalic babies would talk about how proud they were of their children, but now I totally get it. I'm SO proud of her!  She's got everything against her and her heart's still beating and she's still kicking! She's totally kick-butt!
   We did go ahead and make the decision to have an elective C-section as close to my due date as possible, which is December 22. I've never wanted to have a C-section and never in a million years imagined myself having one electively. But, it will give Denali her best chance to survive birth and be with us for a little while. It will also give our families a chance to get up here so they can meet her. So now we just have to pick a date.  I want to wait to have her until after Christmas, but that will be pushing our luck with her health. Also, the week between Christmas and New Year's is never a good time for anything. It's just that Christmas is incredibly important to me and it feels so important for Denali to be with us. It would be her first and only Christmas. But, it probably won't happen. John picked out Dec. 16 as the date he wants her to be born. He had a very beautiful, personal reason for picking that date and I agree.
  Deep down I'm just fighting picking a date because I don't want to give her up. I obviously can't stay pregnant forever, but I want to keep her as long as I can. I have to make peace with letting her go, something I don't know how to do yet.
  Mom told me yesterday about a little girl named Claire Parker that is undergoing chemo for leukemia. She's from my parents' town in Virginia and is being treated at Duke University. She's only 11 months old. Please keep the Parker family in your thoughts and prayers. I can't imagine what they're going through right now.

20 Weeks

 Not a whole lot to write about today. I've been kind of blah this whole weekend. I'm processing a lot of stuff and, while writing usually helps, right now I just need to think.
  I did manage to go for a walk today with John at the base CrossFit gym. He did all the crazy stuff and I just walked in circles. I guess that's something.
  I came across a passage in the book I'm reading today and it resonated with me:

“He once thought it himself, that he might die of grief...But the pulse, obdurate, keeps its rhythm. You think you cannot keep breathing, but your ribcage has other ideas, rising and falling, emitting sighs. You must thrive in spite of yourself; and so that you may do it, God takes out your heart of flesh, and gives you a heart of stone.”

         Excerpt From: Mantel, Hilary. “Bring Up the Bodies.”

Despite our grief, our bodies just keep on living, mostly out of habit. 

A Prayer

Lord, my little granddaughter will not live. I will never hold her in my arms, count toes, look for her mama in her.  I will not be able to wrap her in a quilt I made just for her. We won't walk in the woods in the fall and pick up leaves in all the colors YOU created.  I see ducks with their babies and I realize I will never put one in her tiny hands to feel how soft they are.  She will never be  covered in mud from all the pies we made on the bank. I will never see her running behind a new calf with her hair blowing and her laughter floating back to me.  Just as her mama did. I will never bake cupcakes, wash dishes, or push her in a swing. I miss her Lord…….But I saw her today. She's beautiful, a life you created. No matter how brief it is. I love her Lord, thank you…  I know you will take care of her.You can hold her hand for me. It hurts Lord. It hurts to see my little girl in pain….Please hold her too. Lean close to her. She needs You Lord. I'll hold her too. She needs our strength. And I'll wait. Life is precious. In day to day living we forget how precious life is. Thank You Lord, for all You do. You are there , hold us close, Lord hold us close.   

Written by Carol, Denali's Maternal Grandma

  I think that there must be something encoded in Hetzel DNA that causes them to dislike having their picture taken. John's daughter is no exception! The entire time we were having the ultrasound done today, Denali had her head buried up in the placenta and just refused to cooperate! At one point, Dr. M was pushing on my belly (rather hard) trying to manipulate her into a place where we could see her and Denali kicked her hand! And then it looked like she raised both arms over her head and was trying to push the transducer away! It was pretty comical! And then she kept opening her mouth and it looked like she was yawning. I was also amused to notice that she is doing exactly what I suspected she was doing: Pilates! She scrunches up and then extends her arms and legs and then repeats! She must get that from John, too, because I hated doing those in Pilates!

   Anyway, I loved, loved, loved the ultrasound today! It was so awesome to spend time with her and see her moving around! I didn't know that I was capable of loving this little creature inside of me so much, but I do! It's crazy!
  Other than seeing our beautiful daughter, Dr. M also looked at the amount of amniotic fluid. She said that by eyeballing it looked like I had polyhydramnios, but when Debbie, the sonographer, measured it, I was fine. So, that's a relief! I've been really worried about that! Oh, it doesn't look like Denali has a cleft lip, either. A lot of babies with anencephaly have cleft lips/palates, but as far as we could see today, she doesn't! It doesn't really matter if she did, but I was happy about that.

Bear wearing the preemie hat we got today

  Debbie also made a recording of Denali's heartbeat and put it inside a teddy bear for us. When you press on the bear, you can hear the recording. It's very sweet. I imagine it will be a huge comfort when Denali is gone.
   The hospital has a very nice Breastfeeding Boutique that has classes and sells supplies and stuff. I stopped in to see about donating my milk. I'm still not sure if it's something I will do, but I'm going to look into it. Maybe for a little while, anyway. I also found this adorable little preemie hat! It has fairies, my favorite (And, therefore, Denali's favorite, too)! I made John buy it. So now we have three hats in two sizes. Hopefully one will fit!
  Today was a pretty good day! I feel a million times better about everything. I was disappointed to find out that Dr. M is leaving next week, though. I like her a lot and I was hoping I could see her throughout the pregnancy. I'll meet my new doctor in a few weeks.
  Well, that's all for now. I guess I should go do some housework or something dreadful like that. Or, I could look at her pictures again for the millionth time today...
 

Denali at 19 Weeks

I can't hear you!

Sucking on her thumb or her fist? 

Hands up by her face

Still can't hear you!

I think she looks like she's smiling in this one

No more pictures of my face! 

See my pretty shoulders and ribs?

Still not gonna look at the camera!

Nope!