I had the craziest dream last night. I was at my parent's farm, digging through some old computer stuff they had. I came across a Sonosite (ultrasound) and it was working, all ready to go. I decided I wanted to take a look at Denali. Instead of taking a trans-abdominal approach, I decided to do it trans-esophageal, which makes no sense. Anyway, I got this beautiful, color picture of her, but I had the overwhelming sense that she was a he. She/he had a beautiful, round head and perfect face! I was so excited! I decided that I had to call the doctor and tell her that she had made a mistake, Denali did not have anencephaly! But then I started looking around back of her head and...it was missing. Even worse, her entire spine was completely open (This can actually happen, but as far as I know, Denali does not have this condition). I was pretty heartbroken. Mom and Benjamin and Samuel were watching and I showed them the damage. They seemed pretty horrified and upset.
I have no idea what that dream meant, but I think it's probably some anxiety about our upcoming (Thursday) appointment to have a 3D/4D ultrasound. I spoke with the sonographer today, who actually works full-time for my perinatologist, Dr. M, and does the ultrasound boutique on the side. She was out on vacation the day that we had our appointment, so we didn't get to meet her but she was familiar with us. Anyway, she spoke with Dr. M about it and they thought it would be better to do the ultrasound at the hospital with Dr. M present. Totally fine by me. I hope they don't find anything else wrong with her since she has enough going on. But anyway, I'm looking forward to it, but also a little nervous about really seeing her deformity. And John hasn't seen it at all. From what I saw, her poor little head is just a massacre and it breaks my heart to see it. I know she isn't suffering, but still. No parent wants to see that something that horrible has happened to their child.
You know what pisses me off about this whole thing? From everything I've read, her little brain developed just fine. There was nothing wrong with it. It's just that her skull did not form and the stupid amniotic fluid actually started to destroy her brain tissue! I keep wondering if that part hurt her. It really makes me angry. She had a perfect little brain and now it's just..."a mass of hemorrhaging neural tissue".
When we actually had the last ultrasound when she was diagnosed, we had a student sonographer. I found out that that had actually been her first week on OB. How awful is that? My first week in OB I saw a missed miscarriage and subsequent D&C and then fetal demise. It put me off OB forever. I don't mind gyn at all, but if there's a baby in there, I don't want anything to do with it! I can just imagine how the student felt. I really don't know how anyone works in OB, but I'm glad people do! It's definitely not for me! I can handle adults dying just fine, but not babies and children.
I've been thinking about some things. John and I went to the Apple Store yesterday to get my new laptop fixed. While we were there, I saw a little boy in a wheelchair. I guess he had pretty severe cerebral palsy. It got me thinking that, as awful as anencephaly is, there are worse things. Denali is going to die, but she will never suffer. She won't be sick and she won't be in pain. John and I won't have to endure the agony of watching our child die slowly from cancer or cystic fibrosis or something like that. So, in reality, if she has to die, anencephaly is a blessing. Her short little life will be lived inside the person who loves her more than anything in the world.
In other news, John and I got enrolled in the Duke study. I spoke with the genetic counselor, Heidi, today on the phone. The study involved us sending in Denali's cord blood (I don't think it can be donated here in AK) or a skin biopsy, and blood samples from John and I. They're looking at the genetic and environmental factors in anencephaly. They also require a picture of her head without a hat or bandages. The photos are needed to make sure that she actually has anencephaly and not some other cranial deformity. I was very concerned about the photos. As I've mentioned before, I'm so afraid people will make fun of her and call her a monster or something. I know medical personnel can be cruel! Heidi assured me that the photos are treated with the upmost respect and that they are in a secure database and will not be published. Sometimes they are used for presentations, but we can opt out if we choose. So, I feel much better about that and I'm excited to actually be contributing. The individual genetic tests will not be made available to us, so I'm glad we went ahead with the genetic testing with Dr. M. I'm anxious to find out about those results. I'm pretty sure they will be positive.
Tuesday, July 30, 2013
Monday, July 29, 2013
Some Statistics
I've been doing a LOT of journal reading lately, trying to piece together the random bits and pieces of legitimate, hard scientific information that is out there. The information is so scattered and not even the perinatologist nor Dr. O could really give me any hard facts about continuing the pregnancy. I thought I would share some of what I have found out. My citations are horrible, I know.
I found this journal article from what seems to be a reputable, peer-reviewed journal. It's not exactly a great study, but I found it interesting:
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly Jaquier 2006 BJOG: An International Journal of Obstetrics & Gynaecology Wiley Online Library
I also found an answer to a question that had been bugging me: Denali does not sleep. I kind of suspected that she didn't because her movements are so random, but I wasn't sure. Persons in a persistent vegetative state still have sleep/wake cycles, but anencephalic babies do not. I also thought that the article, although dated, had some pretty good evidence that her organs can be donated. We might need to be at a larger academic hospital for that to happen, but I'm still really interested in donating. I know a pediatrician here in town and I might ask her if she has any experience dealing with pediatric organ transplantation. And anencephaly in general.
I found this journal article from what seems to be a reputable, peer-reviewed journal. It's not exactly a great study, but I found it interesting:
Abstract
Parents are usually told that many anencephalic offspring die in utero or soon after delivery, and many obstetricians offer elective termination of the pregnancy. Following the personal experience of the first author, a personal website was created with the intention of providing information and exchanging views with other parents confronted with a prenatal diagnosis of anencephaly. Data were collected from 211 pregnancies where the parents opted not to terminate pregnancy. These data revealed that polyhydramnios was a feature in 56 (26%) pregnancies, death in utero in 15 (7%) pregnancies, 72 (34%) babies were born prematurely (<37 weeks of gestation), 113 (53%) at term and 21 (10%) after 42 weeks. Stillbirth, presumably resulting from intrapartum death, occurred in 43 (20%) deliveries. One hundred and fifty-three (72%) of anencephalic offspring were liveborn, of those, 103 (67%) died within 24 hours but 6/211 survived 6 or more days (maximum 28 days). Continuation of pregnancy after a diagnosis of anencephaly is medically safe and should be considered as an option
Jaquier, M., Klein, A. and Boltshauser, E. (2006), Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly. BJOG: An International Journal of Obstetrics & Gynaecology, 113: 951–953. doi: 10.1111/j.1471-0528.2006.01014.x
Table 1. Spontaneous outcome of 211 pregnancies after prenatal diagnosis of anencephaly (summary) n % Sex Female 122 58 Male 89 42 Twins (one affected) 22 10 Triplets (one affected) 1 Polyhydramnios 56 27 Death in utero (prenatal death) 15 7 Gestation (weeks) <37 72 34 37–42 113 54 >42 21 10 Not determined 3 Delivery, caesarean section 55 26 Survival Prenatal death 15 7 Stillbirth (intrapartum death) 43 20 Liveborn 153 72 Death within Day 1 103 49 (67% of liveborn) In first hour 41 19 (27% of liveborn) Second hour–24 hour 62 29 (40% of liveborn) Day 2–5 39 18 (25% of liveborn) Day 6–9 5 2 (3% of liveborn) Day 10–28 6 3 (4% of liveborn)
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly Jaquier 2006 BJOG: An International Journal of Obstetrics & Gynaecology Wiley Online Library
I also found an answer to a question that had been bugging me: Denali does not sleep. I kind of suspected that she didn't because her movements are so random, but I wasn't sure. Persons in a persistent vegetative state still have sleep/wake cycles, but anencephalic babies do not. I also thought that the article, although dated, had some pretty good evidence that her organs can be donated. We might need to be at a larger academic hospital for that to happen, but I'm still really interested in donating. I know a pediatrician here in town and I might ask her if she has any experience dealing with pediatric organ transplantation. And anencephaly in general.
The Infant with Anencephaly
Sunday, July 28, 2013
19 Weeks
John went outside yesterday to get the paper and came back inside with a package for me. Inside was a ton of maternity clothes from my friend, Megan! Megan, I can't thank you enough! I'm wearing one of the tops in the picture above and I actually felt...pretty! I even put on some makeup for church this morning (sans mascara because that would be a disaster waiting to happen)! Thank you again!
 |
| That black thread is an ice worm |
I then proceeded to slide all the way back down on my (very cold) bottom to give the worms to the Forest Ranger. She took them back to the visitor's center where they will spend the next few days and then be returned to the glacier. John and I also went "sledding" on his jacket which was a lot of fun. Very cool (literally!) experience!
My feet have been killing me lately from all of the swelling and extra weight. My trusty, comfy Keen hiking boots no longer fit and it's been just agony walking around anywhere. John bought me a wonderful pair of Keen sandals so that I can still go hiking and they give my feet plenty of room to swell! I was so excited to take them out yesterday. They did great, even on the ice and NO FOOT PAIN! Hallelujah! Best of all, they were on clearance!Speaking of the swelling, I lost ten pounds since the beginning of last week. Notice how small my bump is in the above picture? I guess I'm diuresing? I'm drinking a LOT of caffeine, but I'm not urinating more frequently. It's weird. Oh, here is some information on polyhydramnios since people have been asking me about it: http://www.mayoclinic.com/health/polyhydramnios/DS01156
In some ways I feel guilty for going out and enjoying myself, and I'm betting there are people who would criticize me for it. My daughter is going to die and there isn't anything I can do about it. I doubt there is a single second that has gone by since the diagnosis that I have not thought about it. But what good will it do to just sit around and become depressed? How is that going to help Denali? It's not. Everything I've read says that she has not, nor will she ever, achieve consciousness. One source said that she is in a permanent vegetative state. But what do we really know? What can science and medicine tell us about the soul? Very little, as it turns out. Right now, she is inside my body and communicating with me. The emotions of the mother do play a role on the baby. A positive outlook on life is not going to heal her damaged brain- I know that. But does she know that I love her? Can she sense that I love the world and life and I want her to share my experiences while she is here? No one knows! But I'm going to assume that she can and I'm going to do the best I can to ensure that her brief stay with us is a happy one!
To change the subject, one summer my brother and I worked for the same woman who owned her own nursery and landscaping business. Derek did the landscaping and I ran the nursery. One day, the owner's dog was diagnosed with cancer and she decided to have her put down. She asked Derek to dig the grave in her backyard. The whole time he was digging, the dog sat on the edge of the grave and watched him. Derek said it was rather eery. Today was kind of like that. John and I went down to visit Anchorage Memorial Cemetery and see what it's like. It was rather disturbing because Denali was kicking the whole time we were there and I kept thinking about that dog watching her own grave being dug and not knowing she was going to die (or maybe she did?). Anyway, the cemetery was nice. It was even pretty quiet considering it's in downtown Anchorage. Some young people were hanging out and, I thought, being disrespectful, but that's to be expected in any cemetery, I guess. There are two options available, I believe. There is the general infant section of the cemetery, which is sparse and there are no trees. There are, however, some really nice roses that smelled heavenly. Then there is the Catholic infant section which is older and surrounded by trees. I liked it better there as it seemed more peaceful. It also looked less lonely and neglected. There were no flowers or anything on the infant graves, but there were plenty of flowers in the Catholic section and it was obviously heavily trafficked.
In other news, I'm looking into having a 3D/4D ultrasound done. I've contacted a sonographer to find out if she would be comfortable doing it. She has 17 years experience as a diagnostic sonographer, so I would assume she has at least seen pictures of anencephaly. I'd really, really like to get some video of Denali while she is still alive! We may never get to meet her and it would be so awesome to have that memory of her that we could share and watch later. It's really expensive, though. But it would be worth it! Ultracare 4D
Wednesday, July 24, 2013
It's been eight days since we received our diagnosis, but it feels like an eternity. I can't remember what it felt like to think I was pregnant with a healthy baby who would live past birth. Maybe I always knew? I think I did.
Mom and Samuel left today to go back home and John goes back to work tonight. Everyone is worried about leaving me home alone, but I think I will be okay. I just wish my family was closer, but I'm glad that Mom and Samuel were here and were able to stay longer than they had planned to be with me. They have been a tremendous comfort to us!
We had a bit of a scare yesterday. I had not felt Denali move at all since Sunday. Dr. O had said she would stop moving eventually, but it didn't feel right that she would stop moving so abruptly. I had to go to the clinic anyway to have some labs drawn, so, we also asked to listen to her heart. The nurse took us back and tried to locate her heart with the doppler. After about 5 minutes, she gave up and said she was going to call the on-call OB. I truly did not feel like Denali had died, and I wasn't really all that worried. The nurse asked me where I normally felt her moving and I showed her. She put the wand in that spot and there was her little heart just beating away! John and I both started smiling. The nurse was so kind and told us we could listen for as long as we wanted. I could listen forever! The nurse also said that we could start coming in for weekly listens or we could just stop by whenever we wanted to. I think I would like to start coming in once a week since it's just nice to listen to proof that she's alive in there!
When we left the clinic, Denali started wiggling around. It felt like she was rolling in there! I was like, "Okay, scare us to death and then start moving. Thanks!" She hasn't moved all that much since, though. She moved a little last night and I started crying for the first time in a few days. I love her so much and I'm so happy that she's alive but I'm also sad that this is all of the time that I will get with her.
Mom and Samuel left today to go back home and John goes back to work tonight. Everyone is worried about leaving me home alone, but I think I will be okay. I just wish my family was closer, but I'm glad that Mom and Samuel were here and were able to stay longer than they had planned to be with me. They have been a tremendous comfort to us!
We had a bit of a scare yesterday. I had not felt Denali move at all since Sunday. Dr. O had said she would stop moving eventually, but it didn't feel right that she would stop moving so abruptly. I had to go to the clinic anyway to have some labs drawn, so, we also asked to listen to her heart. The nurse took us back and tried to locate her heart with the doppler. After about 5 minutes, she gave up and said she was going to call the on-call OB. I truly did not feel like Denali had died, and I wasn't really all that worried. The nurse asked me where I normally felt her moving and I showed her. She put the wand in that spot and there was her little heart just beating away! John and I both started smiling. The nurse was so kind and told us we could listen for as long as we wanted. I could listen forever! The nurse also said that we could start coming in for weekly listens or we could just stop by whenever we wanted to. I think I would like to start coming in once a week since it's just nice to listen to proof that she's alive in there!
When we left the clinic, Denali started wiggling around. It felt like she was rolling in there! I was like, "Okay, scare us to death and then start moving. Thanks!" She hasn't moved all that much since, though. She moved a little last night and I started crying for the first time in a few days. I love her so much and I'm so happy that she's alive but I'm also sad that this is all of the time that I will get with her.
Monday, July 22, 2013
18 Weeks
When I first found out I was pregnant, John and I went to the mall for something. We passed a Gymboree store and I decided to go inside and look around. I was so excited to finally have a real reason to go, other than just daydreaming. Anyway, I found this adorable outfit:
Pansies are my absolute favorite flower and I thought this would make a great Easter outfit and it was on clearance! John wouldn't let me get it because I think he thought it would jinx us. So, I just saved it to my Pinterest. I looked it up today and it was only available in preemie sizes! Obviously, I ordered one. This may be a bit morbid (what part of this whole ordeal has not been?) but I thought maybe she could be buried/cremated in it. And then I broke down and sobbed while Mom and Samuel held me. What really ticked me off about this whole experience is that Gymboree FORCED me to create an account to place the order! Why can't I just make a one time purchase? Now my inbox is going to be cluttered with junk emails from Gymboree and I don't really want to see them!
I don't know what else to do! I want to take care of my daughter and I feel like the only way I can do that right now is to prepare for her death. To somehow memorialize her and to let her know how much we love her. It's so dumb, but it's the only thing I can do right now!
I went to WalMart today to see if I could find some of the little outfits I had already bought for her in preemie size, but I couldn't. Again, stupid. I don't know how long she'll live if she even survives being born and so, in reality, how many outfits will she need? I just feel so powerless in this whole situation. I mean, I'm a doctor! And I can't even help my own child?!
Anyway, on to more pleasant subjects. We went for a hike (more of a stroll, really) in Eagle River. It was such a beautiful, peaceful place. I was just awed by nature. We even saw a salmon and Mom got really excited! I like to think we're taking Denali around and showing her nature. I daydreamed about taking her out on hikes and showing her how beautiful the world is, but that will never happen. So, this is good enough. In my mind, I point out flowers and animal tracks, etc to her. I hope that she can get some sense of the happiness and peace I have being outside. And even though she's probably deaf, I hope she can hear her family laughing and talking and just enjoying each other's company.Friday, July 19, 2013
OB Visit Update, etc
Our appointment went well, today. Just a regular OB appointment, pretty much. We got to hear Denali's heart beat (143) and I got my bump measured. I'm measuring at 25 weeks which means I probably have polyhydramnios- an excess of amniotic fluid. The doctor (Dr. O) needed to check on the measurements from the ultrasound, but I guess it's pretty obvious. I thought that the perinatologist said I had the normal amount of amniotic fluid, but everything is pretty fuzzy right now. Having polyhydramnios makes a lot of sense. I gained a ton of weight right off the bat and then lost weight and then haven't really gained any more (2 pounds). Also, I've been bigger than I should have been, but I thought that was from being overweight to start out with. I've also been incredibly short of breath the whole time and that is a symptom of polyhydramnios. And swelling. Anencephalic babies can cause polyhydramnios because they are not capable of swallowing the amniotic fluid. So, it builds up. Not sure what we're going to do about it yet.
We also talked about my gallbladder that is still giving me grief, although it's been on the back burner these past few days, obviously. I may still end up having surgery.
We told Dr. O that we wanted to try to carry Denali full-term. She said that they would support us 100%. Also, I get to see her exclusively for appointments, which is nice. In about six weeks, the OBs are going to have a care conference with labor and delivery and the NICU staff to discuss what our plan is going to be. I'm so happy that they are taking this approach and letting us participate! It makes me infinitely more comfortable! I'm also happy that I get to deliver in this hospital. I've been saying all along that I wish I could deliver here! So, I'm feeling better overall about the conditions surrounding her birth and eventual death.
I'm so incredibly touched by the outpouring of support we have received! Today, my friend posted this on my Facebook wall:
"The brahma kamal flower is very unusual and beautiful, few ever get to see it's bloom as it only blooms for a total of six hours but those that have seen it remember it. Denali, regardless of how much time she does have will also be remembered as beautiful. Thinking about you."
Wow. That blew my mind a little! Another friend offered to send me some of her maternity clothes so that I don't have to go shopping for them! That's just a few examples. I'm so blessed to have friends!
Another HUGE blessing came today as well! I sent the residency program coordinator an email explaining my situation and basically telling her that I would not be back this year. Obviously, I was worried about that. I could lose my spot and have to go through match again, which is quite an unpleasant experience. Even the perinatologist was concerned about it. So, when the coordinator called me this afternoon, I was nervous. However, the first thing she asked was how I was doing and when I burst into tears, so did she. She said that she had spoken with the IM residency director and that she said they would support me 100% and that if I needed anything, all I had to do was pick up the phone and call. She further said that they felt I was meant to be in that program and that they would save my spot until I come back, whenever that may be!!! They're even sending me a letter so that I have it in writing. I started crying with relief! I can't believe it!!! I told Dr. O and she couldn't believe it, either! I'm just in shock! What an incredible program I've gotten into!
I do need some thoughts and prayers for two issues right now: 1) I rented an apartment back in Va that I have actually not set foot in. Since I won't be going back for a while, I obviously don't need it. But, I also don't have a job and I can't afford to pay for it. So, that situation needs to be resolved. I have to talk to the landlord next week. 2) I need to apply for temporary disability since I can't work and I'm broke. Those two issues are weighing on my mind right now.
John did manage to get me out hiking today. It involved a bribe of Coldstone Creamery, but I went! It was a GORGEOUS day and it was perfect. Even the mosquitoes weren't horrible. I've pushed myself through being short of breath hiking up mountains these past couple of weeks, but today I just felt really nervous about stressing Denali. If I'm short of breath and my pulse is racing, she probably isn't doing the best, either. So, I took it really, really easy. I think I stopped every ten feet or so to catch my breath. Finally I called it quits and rested with Mom on an overlook about halfway up while John and Samuel continued to the summit. While we waited a bald eagle flew right over our heads and a Mama Black Bear with her 3 cubs went walking by! We also pulled out the Wildflower guide Mom bought and had fun identifying all of the flowers. Have I mentioned that I love Alaska?Decision
John and I have decided not to induce labor early. We spoke with John's priest, who said it would not be abortion. Then we spoke with a pastor from my parent's church and he said that no matter what you called it, it's still taking a life. I think John and I both agreed on that point. It's ending a life. Yes, she's going to die, but aren't we all? None of us knows the day or the hour. I have a profound respect for all life and I refuse to kill even a bug (although a few persistent Alaskan mosquitoes have been swatted lately!). I believe that our daughter should get to live as long as she can! For now, she's healthy and doing all the normal things babies her age do (other than swallowing!). I mean, how much neurological function do most 17-week-old fetuses have, anyway? Not a whole heck of a lot! So, until I start getting sick (a real possibility) we will do everything in our power to keep her healthy and alive!
I'm not one of those hero moms who never would have ever considered ending the pregnancy early. As I mentioned before, it was definitely on the table. I asked every member of my immediate (incredibly pro-life) family how they felt and, with the exception of one brother, agreed that it would not be wrong. I was actually shocked at how strongly I wanted to end the pregnancy considering my feelings about life. And then my friend Jenine sent me this video:
John and I watched it and I realized that I very much wanted to spend time with Denali while she's alive. She may not make it through birth, but if there's a possibility, I want to give her every chance to be held by her family and cuddled and loved! She deserves that chance!
So, that's the plan for now!
I'm not one of those hero moms who never would have ever considered ending the pregnancy early. As I mentioned before, it was definitely on the table. I asked every member of my immediate (incredibly pro-life) family how they felt and, with the exception of one brother, agreed that it would not be wrong. I was actually shocked at how strongly I wanted to end the pregnancy considering my feelings about life. And then my friend Jenine sent me this video:
John and I watched it and I realized that I very much wanted to spend time with Denali while she's alive. She may not make it through birth, but if there's a possibility, I want to give her every chance to be held by her family and cuddled and loved! She deserves that chance!
So, that's the plan for now!
Thursday, July 18, 2013
Stream of Unconsciousness
Oh, where to start. I have so much to say, but I really just...well, I'll just start. Forgive me if it makes no sense.
I have eaten nothing but junk food since Tuesday. And I started drinking soda again for the first time this year. As I'm typing this, I'm eating Ramen noodles and drinking an A&W Root Beer. I hate root beer and I'm not overly fond of Ramen noodles. I'm not eating that much at all, but what I am eating is disgusting. I'm not sure what that's about, but I need to stop.
I haven't much wanted to get off the couch or out of bed, but John is basically forcing me. Once I get out, I'm okay, it just takes an enormous effort to get going. John was able to take a week off from work with the condition that we go see a counselor. We went this morning and she stressed that I have to get up and get out. John also keeps reminding me that my feelings are affecting the baby and I really do want her short life to be as good as it can be. So, that's some motivation. It has felt pretty good to get out and walk and we spent some time in a pool with John's cousins and that was nice. I had to laugh when John's 4yo cousin kicked me in the belly when I was helping her swim and Denali kicked her right back! It's awesome that she's neurologically intact enough to react to her environment! We also took her to Earthquake Park and I exposed my belly (much to the horror of passerby) so that she could get some sunshine. I don't know if any sunshine can actually filter through the layers of fat on my abdomen, or if she's even capable of detecting light, but it felt good to stretch out in the sunshine anyway.
Mom and my brother Samuel are still here and are going to stay another week with us. My other brother Benjamin is taking care of everything back home for them. I can't thank them enough for doing that! Poor Mom is walking around like a zombie, too. I know this is hard for her and she's just as heartbroken as we are.
During our counseling session today, I was able to realize that I'm worried about having a birth plan and a funeral plan and I really, really want to get that taken care of. I'm not usually one to need a plan, but it's important for me right now. All four of us sat down in the food court outside of the BX and started working on the plan. I'm sure we looked like a bunch of loonies sitting there crying, but, oh well. We got some things hammered out. For some reason I'm absolutely terrified that people are going to see Denali and make fun of her when she's born! I'm freaking out about it! And that's been a big part of the plan. Also, I have been dead set against an epidural, but on the off chance that she's born vaginally (most likely she will be a scheduled C-section) then I want as much pain control as I can get without getting snowed. Her life is going to be so short and I don't want the time I *might* have with her colored by pain.
While we were making our plans, no less than TEN pregnant woman walked by. Having dealt with infertility and miscarriage, I had gotten into the habit of immediately hating every pregnant woman that I encountered. Since I've been pregnant, it's been nice to see other preggos and smile inside knowing that my time has finally arrived. I'm not back to hating, but I feel a profound jealousy. It's stupid because I don't know what's going on in their lives. This could be their rainbow, or IVF miracle or whatever. But, most likely they will have a healthy baby and I will not and that hurts.
I keep forgetting that I'm even pregnant. It's really weird. I don't know if I still want to be pregnant. I want her to live, but...I don't know. I guess all the joy of pregnancy has been stolen. I don't get to do anymore baby shopping or anything like that. In fact, instead of planning her baby shower, I'm planning her funeral. I'm in desperate need for more clothes, but I have absolutely zero desire to go shopping. The thought of walking into Motherhood and being around all of the other women makes me want to throw up. Actually, the thought of being in public and being obviously pregnant makes me want to toss my cookies. What will I say when I get the inevitable questions? Do I just say it's a girl, her name is Denali and that she's due in December? I think I will start bawling. Samuel suggested maybe I could make some cards with info on anencephaly to hand people. Would that be weird? I think people mostly don't want to know about stuff like that. Maybe I'll just hide in the house and only go out at night until she's born. I can get by with wearing John's clothes. That actually sounds like a reasonable plan to me.
We're seeing the OB tomorrow and I want to discuss an action plan with her. How will I know if Denali dies? Will we get weekly check ups, or what? When should we schedule her birth? I have about a million questions! I also want to go ahead and get the genetic testing done that the perinatologist recommended. I want to know if this could happen again or if we should ever even try again.
A friend of mine brought up an interesting point today that got me thinking. Because of my previous miscarriage, I freaked out when I found out I was pregnant again. I immediately called and made an appointment. The wonderful midwife totally got my fears and did an ultrasound right then and there. There were actually two, possibly three gestational sacs on the ultrasound! It was super early so there were no heartbeats or anything. Two weeks later at the next ultrasound, there was only little Denali. Could the other baby (babies) have also had anencephaly and didn't make it? Could my previous miscarriage have also been caused by the same deformity? It's very possible. I haven't actually done much research into the mutation yet because, well, I haven't had the energy, but what I have read sounds just like my family.
Okay, I'm exhausted. I'll update after the appointment tomorrow if I have the energy.
I have eaten nothing but junk food since Tuesday. And I started drinking soda again for the first time this year. As I'm typing this, I'm eating Ramen noodles and drinking an A&W Root Beer. I hate root beer and I'm not overly fond of Ramen noodles. I'm not eating that much at all, but what I am eating is disgusting. I'm not sure what that's about, but I need to stop.
I haven't much wanted to get off the couch or out of bed, but John is basically forcing me. Once I get out, I'm okay, it just takes an enormous effort to get going. John was able to take a week off from work with the condition that we go see a counselor. We went this morning and she stressed that I have to get up and get out. John also keeps reminding me that my feelings are affecting the baby and I really do want her short life to be as good as it can be. So, that's some motivation. It has felt pretty good to get out and walk and we spent some time in a pool with John's cousins and that was nice. I had to laugh when John's 4yo cousin kicked me in the belly when I was helping her swim and Denali kicked her right back! It's awesome that she's neurologically intact enough to react to her environment! We also took her to Earthquake Park and I exposed my belly (much to the horror of passerby) so that she could get some sunshine. I don't know if any sunshine can actually filter through the layers of fat on my abdomen, or if she's even capable of detecting light, but it felt good to stretch out in the sunshine anyway.
Mom and my brother Samuel are still here and are going to stay another week with us. My other brother Benjamin is taking care of everything back home for them. I can't thank them enough for doing that! Poor Mom is walking around like a zombie, too. I know this is hard for her and she's just as heartbroken as we are.
During our counseling session today, I was able to realize that I'm worried about having a birth plan and a funeral plan and I really, really want to get that taken care of. I'm not usually one to need a plan, but it's important for me right now. All four of us sat down in the food court outside of the BX and started working on the plan. I'm sure we looked like a bunch of loonies sitting there crying, but, oh well. We got some things hammered out. For some reason I'm absolutely terrified that people are going to see Denali and make fun of her when she's born! I'm freaking out about it! And that's been a big part of the plan. Also, I have been dead set against an epidural, but on the off chance that she's born vaginally (most likely she will be a scheduled C-section) then I want as much pain control as I can get without getting snowed. Her life is going to be so short and I don't want the time I *might* have with her colored by pain.
While we were making our plans, no less than TEN pregnant woman walked by. Having dealt with infertility and miscarriage, I had gotten into the habit of immediately hating every pregnant woman that I encountered. Since I've been pregnant, it's been nice to see other preggos and smile inside knowing that my time has finally arrived. I'm not back to hating, but I feel a profound jealousy. It's stupid because I don't know what's going on in their lives. This could be their rainbow, or IVF miracle or whatever. But, most likely they will have a healthy baby and I will not and that hurts.
I keep forgetting that I'm even pregnant. It's really weird. I don't know if I still want to be pregnant. I want her to live, but...I don't know. I guess all the joy of pregnancy has been stolen. I don't get to do anymore baby shopping or anything like that. In fact, instead of planning her baby shower, I'm planning her funeral. I'm in desperate need for more clothes, but I have absolutely zero desire to go shopping. The thought of walking into Motherhood and being around all of the other women makes me want to throw up. Actually, the thought of being in public and being obviously pregnant makes me want to toss my cookies. What will I say when I get the inevitable questions? Do I just say it's a girl, her name is Denali and that she's due in December? I think I will start bawling. Samuel suggested maybe I could make some cards with info on anencephaly to hand people. Would that be weird? I think people mostly don't want to know about stuff like that. Maybe I'll just hide in the house and only go out at night until she's born. I can get by with wearing John's clothes. That actually sounds like a reasonable plan to me.
We're seeing the OB tomorrow and I want to discuss an action plan with her. How will I know if Denali dies? Will we get weekly check ups, or what? When should we schedule her birth? I have about a million questions! I also want to go ahead and get the genetic testing done that the perinatologist recommended. I want to know if this could happen again or if we should ever even try again.
A friend of mine brought up an interesting point today that got me thinking. Because of my previous miscarriage, I freaked out when I found out I was pregnant again. I immediately called and made an appointment. The wonderful midwife totally got my fears and did an ultrasound right then and there. There were actually two, possibly three gestational sacs on the ultrasound! It was super early so there were no heartbeats or anything. Two weeks later at the next ultrasound, there was only little Denali. Could the other baby (babies) have also had anencephaly and didn't make it? Could my previous miscarriage have also been caused by the same deformity? It's very possible. I haven't actually done much research into the mutation yet because, well, I haven't had the energy, but what I have read sounds just like my family.
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| Very first ultrasound at 5 weeks showing multiple gestational sacs |
Denali at 17 Weeks
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| There she is! |
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| Feet! |
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| Hand |
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| This is the cutest thing ever! Her little butt... |
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| She's got legs! And she knows how to use them! |
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| Her arm |
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| Her face in profile |
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| Her face. I think it's beautiful because it's her! |
Wednesday, July 17, 2013
It's a...
We got to see our precious little GIRL, Denali, today for the first time in detail. We got to see her little hands and perfect little feet and all of her little organs. She was squirming and kicking and waving her arms around. She was so cute! Unfortunately, she was diagnosed with anencephaly- a fatal neural tube defect. Basically, she does not have a skull or a brain, which is not compatible with life outside of the uterus. (If you decide to google anencephaly, please respect that these babies are human beings and not a freak show to be ogled. They are someone's child.)
When my OB called me last Friday morning, she said that we were at an increased risk for spina bifida and Trisomy 18, as I mentioned previously. Anencephaly did not even cross my mind. It wasn't until we met with the genetic counselor this morning and she said that we were at an increased risk for neural tube defects that it hit me- I immediately blurted out, "does that include anencephaly?"and she confirmed that it did. I knew in my heart that that's what it was.
I've been horrified by anencephaly since I first learned about it in medical school. For some reason, I started reading the blogs of families who had anencephalic babies. If you had asked me yesterday what the absolute worst outcome of pregnancy could be, I would have said anencephaly. And I haven't changed my mind. It seems like I always knew I would have a baby with this horrific birth defect.
After we met with the genetic counselor, we went in for the ultrasound. A sonographer student started the scan taking a million measurements and joking that the baby wouldn't hold still. It seemed like she looked and looked for a long time. The nurse told us that when the student was done with the scan, the doctor would come in and take a look to verify. When the student finished, she left the room and I sat up. I had gotten extremely queasy lying on my back that whole time and when I sat up, I immediately started vomiting all over everything. It was not pleasant. After the nurse, John and Mom got me cleaned up a bit, the doctor came in. We chit-chatted about how we were both DOs and career choices. Then she started scanning again. She looked at all of the same structures and chatted pleasantly the whole time. John had to leave in the middle of the scan to go to an appointment, so, when he left I told the doctor that I wanted to know the sex. She looked around and said "It's a...GIRL!" and typed GIRL on several pictures! I was soooo excited! Mom and I were laughing and the nurse congratulated me and asked me what her name was. I told her it was Denali. I looked at Mom and I said, "Oh no, I guess this means a teenage girl" and the doctor said, "this means a whole lot of things. I have a 5yo girl." I immediately thought that I would only have a teenager if she survived, but I put the thought out of my head. Everything seemed fine and the genetic counselor had reassured us that most of the time babies with a positive quad screen are fine. I started to relax a little and enjoy watching my daughter. The doctor said that she was really having a hard time seeing the head because the baby was pressed up against the placenta and that she would have to switch to a trans-vaginal probe. I got prepped for that and was in good spirits. My heart sank when she started looking at the head. I couldn't see the top of the head, but I told myself the placenta was in the way and that I'm not that good at reading ultrasounds (Bull crap. Oh the lies we tell ourselves!). I asked the doctor if everything looked okay and she said she couldn't see what she needed to see. And then she said she couldn't see a cranium. By this time, I knew that I was also seeing what I thought I was seeing and tears started streaming down my face. I told the doctor I was worried and she said, "yeah" quietly. Mom came over and sat beside me and held my hand. At that point, the doctor moved the probe and a frontal picture of the baby's face came up. Anencephalic babies have a very characteristic look to their faces and heads and I immediately knew what I was seeing. I started crying a little harder. The doctor said she needed to talk to her partner and sent the nurse to get him. She said she didn't want to say anything until she had a second opinion. The nurse came back and said the other doctor was with another patient and the doctor said to tell him that she really needed him. He never did show up and finally she withdrew the probe. I asked her if it was anencephaly and she said she thought it was. I started screaming "no, no, no" and crying hysterically. Mom came over and grabbed me and we both sobbed. The nurse burst into tears, too. The doctor said she would give us some privacy and left the room. Mom wanted to call John, so I did. He was driving and I told him that it was bad. He asked me what it was and I told him that our daughter did not have a brain. He said "Oh no" and said he would be there shortly. The doctor came back after a few minutes and said that she had talked with her partner and that he also agreed that it was anencephaly. We talked a little about what it meant and she kept repeating that it's a lethal deformity and that the baby would die. We talked about options. We talked about statistics and chances for having future children. We talked about how much folic acid I took before I was pregnant (the recommended dose) and during the first trimester (way more than the recommended dose). We talked about diabetes and how my sugars are doing because uncontrolled diabetes can cause anencephaly. As far as I know I'm not diabetic, but I've been doing fingersticks anyway and my sugars have been stellar. She recommended chromosomal testing for the baby when she dies and genetic testing for me, as well as a HgA1C. She said I could have an amniocentesis if I wanted one, which I don't. John came in about then and she repeated everything while we held each other and cried. Mom left and walked around the office and she said the office staff were all crying too. Finally, the doctor told us to stop downstairs at my regular OB's office to make an appointment. She had called ahead and spoken with the OB. The office staff were incredibly sweet and offered us drinks and snacks and put us in a room. Finally the OB came in, crying. She shared her personal story of a similar situation and discussed our options with us. Both doctors gave me their personal cell phone numbers and told me to call anytime. I thought they both handled the situation very well and I will remember that when I have to give bad news.
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| This picture captures our feelings better than anything I could write |
So, where do we go from here? We basically have two options: 1) induce labor now and end the pregnancy early and 2) continue the pregnancy. I really don't want to hear anyone's negative comments about either choice, so keep them to yourselves. This is our decision that we will make together with input from our families and spiritual advisors. It's funny, but my immediate reaction was the same reaction I had when I learned that my last pregnancy had ended with a missed miscarriage- I want this baby out of me! NOW! I didn't want copies of pictures or anything. I wanted to check myself into the hospital and be induced right then and there. Cooler heads prevailed and I got some good advice to wait until next week to make a decision. I don't know what we will decide, but for now I'm happy knowing that my baby girl is safe inside of me and very much alive! The vaginal probe must have aggravated her (or perhaps all the stress hormones) but she has been feisty all day letting me know she's there! The doctor said that eventually she will stop moving, but for now she's wiggling for all she's worth!
This has been the worst day of my life, and trust me on this one people, I've had my fair share of rough days. I'm so thankful that Mom, my brother Samuel and John are here with me! I also feel lifted up on the thoughts and prayers of so many people and I'm thankful for that as well. I don't know what the future holds, but I know it's going to be one hell of a rough ride from here on out. Please, please keep us in your thoughts and prayers!
Monday, July 15, 2013
17 Weeks- Bad News
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| This is actually 16 weeks, 6 days at Portage Glacier |
I was actually expecting this baby to have Down Syndrome since I have a strong family history and because of my advanced age. So, I was quite shocked to find out that I was at risk for Trisomy 18 and Spina bifida. I thought that I did everything right to prevent Spina bifida- I almost OD'ed on Folic Acid when I first found out I was pregnant, and I have been taking a multivitamin with Folate for years. I felt like I was safe. My brother has a very mild form of Spina bifida called Occulta, so perhaps family history is a factor there? I don't really know enough about it to know for sure. What I keep thinking about is seeing the baby kick and cross and uncross its legs last week on the ultrasound. If he or she has Spina Bifida, wouldn't it be paralyzed? Again, I have no idea.
Trisomy 18 is a chromosomal abnormality and it's my understanding that it's just sorta random. At any rate, some babies are stillborn, some die a few days after birth and very few live to their first birthday. They are severely retarded and often require interventions like feeding tubes and heart surgery. I've been thinking about that a lot and, right now, I would want my baby to have as few interventions as possible. I would want to prevent as much pain as I could and let it die naturally.
Have you ever seen the YouTube video called 99 Balloons about a baby with Trisomy 18? I've been thinking about it pretty much non-stop as well: *Warning: If you don't cry while watching this video, you are probably dead. Very, very sad.*
I actually have been trying to stay busy this weekend to take my mind off things, and I've been doing pretty good. I had a breakdown this morning, but it was fairly short and contained. I'm not really worrying so much as thinking about all conceivable possibilities and options (I am going to be an internist, after all). A lot of people keep telling me that it's going to be okay. I really don't know what that means. It may be okay, but having a baby with lots of physical and mental disabilities is definitely not okay! Actually, this whole situation has been quite stressful and that's not okay, either. It sucks. And I'm scared!
At any rate, I hope we will get some answers tomorrow. We would definitely appreciate all of the thoughts and prayers that we can get!
Thursday, July 11, 2013
16 Weeks
So many exciting things to talk about this week! I have a little over a month off (difficulty getting my medical license) so, I'm back in Alaska with John! Mom and my brother are also here, too! We're having a great Alaskan adventure!
AND...we got to see little Hoecake today for the first time in 9 weeks! It was sooo awesome!!! I was so excited that John was able to be there! He and Mom stared raptly at the screen while our little one jumped around.
The picture isn't the greatest- on the right is the head and then you can see the ("loooong") spine at the bottom of the picture:
What cracked me up was that the baby kept crossing its little legs when it posed for a picture! That is a total John pose:
So, with the long spine and the crossed legs, looks like we have a mini John on our hands! HOWEVER, my placenta is anterior and that is supposedly seen more often with a girl! The midwife was unable to get a good look, but we have our anatomy scan in three weeks and we should find out then! Or, I will. John still doesn't want to know.
It was such an incredible thrill to see this little creature bouncing around inside of me! I can't help but have a sense of pride knowing that I'm growing a little person! It's really the coolest thing I've ever done!
On a less happy note, I have cholecystitis. I saw my Va OB on Monday and was running a fever at the time with terrible right upper quadrant pain and nausea. She wanted to send me to the surgeon right then and there, but I was leaving Tuesday to come up here. She made me promise I would see someone up here right away, and I did. But, it looks like my gallbladder is going to have to come out, and soon. I had cholecystitis about seven years ago and saw a surgeon who told me having surgery would not necessarily relieve the pain I had been having (What kind of surgeon says things like that?). So, I decided to wait it out. The surgeon did tell me that if I ever got pregnant, I would definitely have to have surgery. I guess he was right. Grumble, grumble. I DO NOT want to have surgery! But, you know what they say: nothing heals like cold steel...
The picture isn't the greatest- on the right is the head and then you can see the ("loooong") spine at the bottom of the picture:
What cracked me up was that the baby kept crossing its little legs when it posed for a picture! That is a total John pose:
So, with the long spine and the crossed legs, looks like we have a mini John on our hands! HOWEVER, my placenta is anterior and that is supposedly seen more often with a girl! The midwife was unable to get a good look, but we have our anatomy scan in three weeks and we should find out then! Or, I will. John still doesn't want to know.
It was such an incredible thrill to see this little creature bouncing around inside of me! I can't help but have a sense of pride knowing that I'm growing a little person! It's really the coolest thing I've ever done!
On a less happy note, I have cholecystitis. I saw my Va OB on Monday and was running a fever at the time with terrible right upper quadrant pain and nausea. She wanted to send me to the surgeon right then and there, but I was leaving Tuesday to come up here. She made me promise I would see someone up here right away, and I did. But, it looks like my gallbladder is going to have to come out, and soon. I had cholecystitis about seven years ago and saw a surgeon who told me having surgery would not necessarily relieve the pain I had been having (What kind of surgeon says things like that?). So, I decided to wait it out. The surgeon did tell me that if I ever got pregnant, I would definitely have to have surgery. I guess he was right. Grumble, grumble. I DO NOT want to have surgery! But, you know what they say: nothing heals like cold steel...
Monthly Survey
I'm going to try to do one of these surveys at least once a month:
How far along? 16 weeks, 4 days
Maternity clothes? Yep. I can still do some regular shirts, but they are starting to get too short.
Stretch marks? Nothing new since last month. I started doing the Palmer's Cocoa Butter regimen and it really seems to be working well. We shall see if continues to work...
Sleep: Pretty much back to my old sleeping habits. I'm still having a little bit of insomnia, but nothing too bad.
Best moment this week: Getting back to AK to see Daddy, getting to hear the heart beat twice and also getting an ultrasound! This week has been great so far!
Miss Anything? I'm still not back to 100% as far as energy, but it's getting better. I miss being able to go grocery shopping without being exhausted afterwards!
Maternity clothes? Yep. I can still do some regular shirts, but they are starting to get too short.
Stretch marks? Nothing new since last month. I started doing the Palmer's Cocoa Butter regimen and it really seems to be working well. We shall see if continues to work...
Sleep: Pretty much back to my old sleeping habits. I'm still having a little bit of insomnia, but nothing too bad.
Best moment this week: Getting back to AK to see Daddy, getting to hear the heart beat twice and also getting an ultrasound! This week has been great so far!
Miss Anything? I'm still not back to 100% as far as energy, but it's getting better. I miss being able to go grocery shopping without being exhausted afterwards!
Movement: Yep. Lots of little flutterings and bumps going on!
Food cravings: Coke and Cherry ICEE mixed together. I haven't had those since I was a kid, but suddenly they are awesome!!!
Anything making you queasy or sick: No, not really. I have some food aversions (broccoli, which I loved in the 1st trimester) but nothing major.
Have you started to show yet: Definitely. I had a gentleman get up on a packed airport train to give me his seat. Chivalry is not dead!
Gender prediction: I'm still thinking boy
Labor Signs: No! Hopefully not for a while!!!
Belly Button in or out? In. I don't think it will make an appearance any time soon.
Food cravings: Coke and Cherry ICEE mixed together. I haven't had those since I was a kid, but suddenly they are awesome!!!
Anything making you queasy or sick: No, not really. I have some food aversions (broccoli, which I loved in the 1st trimester) but nothing major.
Have you started to show yet: Definitely. I had a gentleman get up on a packed airport train to give me his seat. Chivalry is not dead!
Gender prediction: I'm still thinking boy
Labor Signs: No! Hopefully not for a while!!!
Belly Button in or out? In. I don't think it will make an appearance any time soon.
Happy or Moody most of the time: MOODY!!!
Looking forward to: Having a little R&R this month
Looking forward to: Having a little R&R this month
Wednesday, July 3, 2013
15 Weeks
Hello, Hair! My hair is back, and it's better than ever! It's been so disgusting and oily for the past few weeks, but this week, it's back to its normal, shiny, wavy appearance! Hooray! Also, new this week, I've been able to work all day, not take a nap and go to the gym and feel relatively okay! My energy is finally returning, I think! Granted, I'm not working out at anywhere near my pre-pregnancy intensity, but it's a start!
It's interesting that for the first time in my life, food and exercise isn't all about my weight! Last night when I went to the gym, I was initially bummed by how few calories I burned. But then I realized, the baby needs those calories and I'm just trying to make myself stronger and healthier, not thinner. It was kinda nice to leave the gym without feeling guilty. I also caught a glimpse of myself in a shop window and noticed that my belly has gotten a little bigger. I wasn't upset- it didn't spoil my day! These experiences have made me realize just how much time I spend obsessing and feeling bad about food, exercise and my weight! It's ridiculous, really. Such a waste. Hopefully, I can apply those realizations to my post-pregnancy life, but I'm sure I will go right back to obsessing once I deliver.
I noticed this weekend that I've started using pregnancy as an excuse to be a total shlumpadinka. I'm really a total schlumpadinka at heart anyway, but I do try to supress it. Sunday, I went out shopping dressed in ratty flip-flops, and my equally ratty gym clothes. I didn't have any makeup on and my hair was, well, appalling. My mother, on the other hand, had on a chic dress, hair done up nicely and makeup. Terrible. I'm not going to go all Pregnant in Heels or anything, but I feel like I should at least put in a little effort! I guess part of the problem is that my wardrobe is rather limited right now. There's nowhere to buy maternity clothes around here at all! I just need to make another trip to Motherhood and some other stores once I get back to Anchorage next week. Maybe I'll call Oprah, too.
I'm almost out of Zofran. My next OB appointment isn't until next Monday and I don't know what to do until then! I'm trying to conserve the little bit that I have, so, I didn't take any on Sunday and Monday. Sunday I was mostly okay, my stomach just hurt a little. But Monday, the nauseau came back full-blown! Awful! I thought it would be gone or at least better by now, but no luck, I guess. I will probably be one of those lucky women who has morning sickness throughout her pregnancy!
Ah! So much to think about! Coordinating maternity and paternity leave with John, figuring out how I'm going to take care of a baby by myself while also being an intern...It's overwhelming! It will all work out, I know that, but it's trying to get it all together that is so stressful!
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| Proof that I was at the gym. Or, at least the gym's bathroom |
I noticed this weekend that I've started using pregnancy as an excuse to be a total shlumpadinka. I'm really a total schlumpadinka at heart anyway, but I do try to supress it. Sunday, I went out shopping dressed in ratty flip-flops, and my equally ratty gym clothes. I didn't have any makeup on and my hair was, well, appalling. My mother, on the other hand, had on a chic dress, hair done up nicely and makeup. Terrible. I'm not going to go all Pregnant in Heels or anything, but I feel like I should at least put in a little effort! I guess part of the problem is that my wardrobe is rather limited right now. There's nowhere to buy maternity clothes around here at all! I just need to make another trip to Motherhood and some other stores once I get back to Anchorage next week. Maybe I'll call Oprah, too.
I'm almost out of Zofran. My next OB appointment isn't until next Monday and I don't know what to do until then! I'm trying to conserve the little bit that I have, so, I didn't take any on Sunday and Monday. Sunday I was mostly okay, my stomach just hurt a little. But Monday, the nauseau came back full-blown! Awful! I thought it would be gone or at least better by now, but no luck, I guess. I will probably be one of those lucky women who has morning sickness throughout her pregnancy!
Ah! So much to think about! Coordinating maternity and paternity leave with John, figuring out how I'm going to take care of a baby by myself while also being an intern...It's overwhelming! It will all work out, I know that, but it's trying to get it all together that is so stressful!
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