Denali's Story Part 2

I've been trying to write all about Denali's life in a chronological order and I realize that it's impossible. The time that we had with her blended and ran together so much that specific days and events were irrelevant to me. Add my sleep deprivation to the mix and it's a wonder I can remember anything specific!
  When we got to Mother-Baby Unit, everything was a whirlwind! The nursing staff was trying to get me situated and everyone else was trying to see and hold Denali! Since Lori, the photographer, was there, we decided to get formal pictures with Denali. Grandpa Tom went out to the car for Denali's suitcase. Yes, she had her own suitcase filled with adorable clothes! This led to quite a few costume changes! Poor baby, her first few hours of life were spent being shuffled in and out of different outfits! Grandma Kim handed me a little onesie to put Denali in and I realized that I was unable to dress her! I've put in central lines and intubated people, but trying to dress my newborn made me break out into a sweat! John's mom just laughed at me and helped me. The outfit that we put on was one I bought the day she was diagnosed. I expected her to be premature and small, but she was not. Her fat little self barely fit!

Short and fat and proud of that!

Daddy and grandpas changed her into a better fitting outfit that Daddy picked out. It cracked me up to see three grown men fussing over a baby girl's clothes. It was adorable, really.

They also added some Mary Jane booties that Grandma Kim picked out! Denali was sooo cute!!!

We done good

 For Christmas, Daddy gave Denali and I matching pearl bracelets. Great Aunt Cynthia (my aunt) also gave Denali a pearl bracelet! Denali was very much a Southern girl and insisted on wearing her "bling" right away!

 

Sweet Briar girl in the making!

After that, we had her birthday party! John had picked up a tiny cake with matching cupcakes and we all gathered around to sing Happy Birthday to her and have a cupcake. I couldn't eat one because I had just had surgery, but I did give Denali a bit of frosting on my finger, hee hee.

Happy Birthday to Denali!

Yumm! Sugar!

  After her party, I realized it was getting late and Cristen and Lori left.

  Throughout all of the pictures, you can see Denali rooting and tell that she's hungry. I knew she was hungry and probably getting dehydrated, but I didn't know what to do about it. No one knew if she was able to swallow or not and I was scared of her choking.

Food goes here, Mama!

Feed me!

Noms! Now!

 Nurse M suggested we dip our pinkies in water and let her suck on them for a while and see how she did. We did and she was able to suck and seemingly swallow! We continued to give her water for a while, but she was still hungry. I finally decided to try to nurse her. M helped me prepare since I had absolutely no idea what I was doing. I expressed a bit of colostrum and Denali started to suck, but she didn't latch. I ended up just putting a few drops in her mouth, which she swallowed, to my relief. Again, I felt no instinct to try to nurse her. It just didn't feel right to me. Perhaps I instinctively knew that she couldn't breastfeed, but I never tried that hard, so I don't know if she could or she couldn't. At any rate, I never seriously tried to get her to latch. Instead, we started dipping 2x2s into sugar water and giving her that. She was able to suck on the gauze and the sugar water soothed her hunger. Later that evening, after grandparents had left, I started pumping and we gave Denali colostrum instead of the sugar water. She ate it up really well!

Mmmm, mmmm! Good stuff!

That first night with just the three of us was magical. I don't have many pictures and I'm glad that I don't because I was completely focused on cuddling Denali. Honestly, I just stared at her in rapt amazement! I didn't expect her to be alive and I certainly did not expect the active, interactive and noisy little girl that I was holding! We took her clothes off and John and I both held her skin-to-skin. She was so soft and chubby and warm! I remember looking up at John at one point and telling him that this was the best day of my life. It truly was! I have never felt such complete love and adoration for another person as I felt for Denali. She was beautiful and perfect! Obviously, I did not sleep at all that night. I don't even think I dozed. John tried to rest a bit, but he had to help with Denali since I couldn't get out of bed yet.

Back to "Normal"

John went back to work yesterday. I can't believe it that time has gone by this fast! Tomorrow, it will be a month since Denali was born! I wouldn't mind so much except that soon I will have to leave Alaska and go back home. I don't want to be separated from John! But that is the life we chose and that's the path we have to take. Eventually, we will be together permanently! At least, that's my hope, anyway.
  It occurred to me as I was dropping John off at work that it was the first time I was doing so without Denali. I realized how much of a presence she was in my daily life. I talked to her constantly (sometimes out loud, in public) and touched her often. I was rarely ever lonely because she was with me. I miss that little girl! 
  I'm not sure what we did while John was on paternity leave. We found ourselves frequently wandering around WalMart, which was strange. We ate out a lot, too. Neither of us felt like cooking. We definitely did not get as much accomplished as I had hoped that we would, but that's okay. We spent time together and that's what was important. We did have a little get away at a B&B in Talkeetna last week and that was really nice. We just relaxed and enjoyed our beautiful surroundings! And played Scrabble, which I had forgotten I enjoy.

Sunset on the beach in Talkeetna. Hard to see, but that's Denali in the background.

  A difficult situation came up last night and I was really angry with John about it. I'm not sure how we could have handled it better if (when) it happens in the future. I went for my bi-annual haircut and I had the same stylist that I had back in September. I started talking with her about my pregnancy and told her that I had had the baby three weeks ago. Of course, she asked where the baby was. I didn't want to lie to her, but I also didn't feel like discussing it, either. I mean, it puts her in a weird position and I just didn't want to be sad. So, she started asking me what motherhood is like. I called on my vast experience of three days and told her about feedings and changing diapers, etc. I told her how much of a daddy's girl Denali had been. But I didn't give any indication that Denali had died. After she finished, I went to pay and realized I didn't have enough cash. So, I went to find John. I sent him in to pay and told him not to mention that Denali is dead if it came up. Well, it came up and John got cornered and told the lady that Denali had died. This was all my fault for putting John in that awkward position in the first place, but when he told me, I was furious! I felt like I got to be a normal new mom for just a few minutes and that was taken away from me. I was back to being a mom with a dead baby. I don't much care for that label. Not only that, I'm sure the stylist thought I was completely nuts and a liar.
  So, what do we do? I want to talk about Denali. I want to talk about the three wonderful days that I got to be a mom to her! But I don't necessarily want to talk about her being dead. It's awkward, no one knows what to say (which is fine, btw) and I don't feel like a normal person. If the situation is relevant, then I don't mind talking about her death. For instance, if someone asks me how many children I have, I don't mind saying two and that neither are living. But if someone asks specific questions about Denali and wants to talk about babies, then I want to talk about Denali's life. The fact that it was brief doesn't matter.

Denali's Memorial Service

For those of you who were not able to attend Denali's Service, we uploaded it to YouTube.
Part 1
Part 2
Part 3

How We're Doing

How are we doing? Well, we're still here. We're still breathing. The world didn't stop when Denali died and I didn't want it to. It's been 13 days since we held our daughter alive and the time has gone by unbelievably fast. Every day separates us from her even more and it hurts. I don't want to forget what her weight in my arms felt like or her smell or all of the sounds she made, but it's happening. Her memories are fading. Every day I watch the videos of her and I've memorized every blink of her eyes and twitch of her mouth, but it's not her, it's just the recording of her. That makes me sad. 
  Someone pointed out that every baby changes and every parent forgets what it was like when their child was a newborn. No baby stays the same. That's true. My mom cries when she looks at our baby pictures. I guess we're not so different.
  John took some time off from work, so we've been hanging out. I don't know what we've been doing, though. We thought we might take a trip, but we haven't been organized enough to plan anything and we're running out of time. It seems like we have a million things we need to get done and when we go to bed, we haven't gotten anything accomplished. We've been sleeping a lot. We're both bone-weary. We did get our Christmas decorations put away and yesterday we went back to our gaming group. It was good to be with people who didn't mention a single word about my deflated belly and missing baby, but it drained me. We were supposed to go to a squadron get-together afterwards, but I couldn't do it. I just wanted to go home and be quiet. And that's what we did. We ordered pizza and watched a movie.
  We have been hitting the gym. I started my 10K training plan that I was working on when I got pregnant and John is training for his PT test next month.  I feel like people are lumping me with the New Year's crowd. I want to wear a sign that says I just had a C-section! It's silly to worry about what other people think, but I do. Actually, I feel like I'm in decent shape, considering. All of that walking and water aerobics did more for me than I expected!
  As far as recovering from the surgery, I'm doing fantastic! I haven't had to take any ibuprofen in almost a week! I actually don't think I had surgery- I think Denali was teleported out of me or something. My incision is barely visible! I was expecting a horrible recovery, but I've been fine. It's been a blessing because I would have been miserable otherwise.
  I found a baby who needed my milk and I've been pumping, which has kept me occupied. It seems like my timer is constantly going off, reminding me to pump! I think it would be so much easier feeding a baby because it's more acceptable to breastfeed in public and I would get to snuggle my baby! Yesterday, I had to pump in the car and I pumped once in a public restroom, which did not go well! But, I'm enjoying the forced 20 minute sessions at home where I can sit down and catch my breath. And I get such a feeling of satisfaction from collecting all the milk and putting it into the bags!
  One thing that has plagued me is an almost constant feeling of guilt. I don't often feel guilty, so these feelings have come as a surprise. I've thought of a thousand little things that I did wrong with Denali or that I didn't do for her that I should have done. I've felt guilty about the way she died. I've picked apart every minute of her life and scrutinized my behaviors. In my mind I know that I absolutely did the best I could considering I had just had a baby and major surgery and didn't get much more than a few hours of sleep the entire three days she was alive. But part of me wants to find some way to blame myself. Perhaps this is what grief looks like for me this time. John said that every parent has regrets and asked me to imagine how I would feel had I raised Denali for 18 years. Yet another truth. Guilt probably comes with parenting. Had Denali lived, I'm sure I would not feel guilty about most of the things that are bothering me. But she didn't and I do. So, there it is.
  I'm still working on the rest of Denali's story. I'm thankful that I'm able to write again!

Denali's Story Part 1

I am slowly trying to write down Denali's story. There are some places where my memories are vivid and some where they are confused and starting to fade. This is a very long story and I hope that you can bear with me while I tell it.

It began on December 27 at 5:00AM. We had gone in for our pre-op visit the night before, but things had gotten so crowded in L&D that our nurse instructed us to come back at 7:00AM. After a restless night, John and I got up and I showered with the antiseptic soap. I was starving and thirsty! We got dressed and John took a video of me. I called and talked to my mom for a bit and then our doula, Cristen, arrived to go with us to the hospital. I was so nervous that I was crying by the time she got there, but calmed down on the ride over. We checked in at L&D and were taken to a large room. The nurse from the night before started getting me ready, then shift change happened... and another nurse came in. I changed into my gown and Cristen had asked for a robe for me, which was wonderful.  Cristen, John and I were chatting when the nurse came in to tell us that my surgery had been bumped due to several emergency C-sections. I was so disappointed because I was anxious to get started. Being ten months pregnant and hungry and thirsty was no fun, and I was getting nauseous from not eating. Our family arrived and we introduced everyone when Fr. Dan arrived. We were frantically trying to let Dr. P, Denali's doctor, and the photographer, Lori, know that the surgery time had been changed. Fr. Dan left to go attend to some other business, and we were left to wait for our turn in the operating room. Everyone had coffee and water and I thought I was dying! The nurse came in to start my IV in my hand. I whined until she agreed to use some local before starting the IV;  she also got me some Zofran. Then we all got up and walked around the hospital lobby a bit. I'm sure I looked charming walking around in a hospital gown, fuzzy socks and Danskos with IV pole in tow. John's dad, Tom, got some video of that just to make sure my humiliation was complete! When we got back we heard that my surgery had been rescheduled for 11AM. One of the neonatologists and a nurse practitioner from NICU came by and we chatted about what to expect that day. I asked if I should try to feed Denali or if that would make it harder for her and Dr. J told me to do what my heart told me to do. John's mom, Kim, asked if Denali would cry and Dr. J said she might. I believe my dad, Brian, asked if she would suffer at all and Dr. J said that to the best of our knowledge, she would not have the ability to feel pain. Next, Dr. O came in and spoke with us briefly. John told her that I had been afraid my IV had blown and she assured him that it had only backed up. Then D, the nurse we had met with previously, came in to give us an update. The OR was so busy that she had scrubbed in on two cases. She and Fr. Dan seemed to hit it off, and she agreed to sign Denali's Certificate of Baptism when the time came. Fr. Dan asked if we would like for D to be Denali's godmother since she would be signing the certificate. John and I agreed. Next, Chaplain S came in and prayed with us. Lori, the photographer arrived just then.

Waiting

Cristen and Dad

Fr. Dan and John looking very dashing in their paper scrubs

Finally, the circulating nurse from the OR, E, came in and gave me some acid reducer. She told me it tasted like "salty cry babies" and she was right! I gulped it and then got into a wheelchair to be wheeled to the recovery room. I was so scared that I didn't tell anyone goodbye. We got to the recovery room where we talked with Dr. O some more and then met the anesthesiologist, Dr. L. She gave us a Miraculous Medal and a handmade Rosary for Denali. John had left his phone with his parents and I was upset because I wanted to hear Let It Be before I went in for the surgery. I have listened to that song before every test in my academic career and it seemed fitting to listen to it before one of the biggest events of my life. Dr. L said she would play it for me and that she was also going to play some lullabies. Then I started crying. John and Fr. Dan started praying the Rosary and I cried and cried. D came over and took my blood for the anencephaly study and then it was time to go to the OR.

Fr. Dan offering some words of comfort

I steeled myself and got into the wheelchair to be taken back to the OR. I have never, never been so scared in my life! I saw Dr. P in the corridor and I was barely able to whisper hello. And then I was in the OR. I was introduced to everyone and told to get up on the table. I sat down and the circulating nurse put a stool under my feet. I had horrible tunnel vision. A man introduced himself as the anesthesiologist's little helper and I started to ask if he was an elf and the anesthesiologist was Santa, but I didn't. Turns out he was another anesthesiologist. Someone started cleaning off my back and Dr. L commented on my cute "pixie" tattoo. Then it was time for the local anesthetic. Dr. L put it in and there was a "little sting and a little burn" (does every doctor use the same line?) and it was no big deal. Then it was time for the spinal needle. The circulating nurse put her forehead to my forehead and told me to squeeze her hands. At first, I felt nothing and then there was the weirdest pain I've ever felt in my left lumbar area. I tried to breathe through it, but it just got worse and worse until it reached a crescendo and I jumped and yelled. Dr. L tried again and again the same thing happened. The same exact pain in the same exact spot. Someone commented that the needle wasn't even in my back anymore. I started crying because the pain was so intense. I just wanted it to be over! Dr. O was also in front of me at that point and everyone was telling me what a great job I was doing but I was miserable for being difficult. Then Dr. L tried the stick from a right approach and my entire lower body got really warm and tingly. She told me it was in and I said "thank God"! I was swung around a laid back on the table. I wanted to tell Dr. O to do a good job so I could have a VBAC because I would never have a spinal again! Dr. L asked me if I had had a scoliosis as a kid and then said that maybe I had some scar tissue back there and she apologized for messing up my fairy tattoo's wing. She said I was difficult because I was a medical person. D was on my left side, holding my hand and the circulating nurse was somewhere on my right. The oddest sensation of not being able to breathe overcame me and I said something about it. I was convinced I was having a bad reaction and was going to die and I was okay with that. I was assured that the feeling was normal. Then I felt the urge to get up and run around the room. I said that and someone told me to go ahead and try! Dr. L put some oxygen on me and I calmed down. The drapes went up and someone asked me if I could feel something and I said no. I heard Denali's heartbeat and I assumed someone was checking on her. Let It Be started playing and I started crying. D was on my left side holding my hand and she told me it was okay to cry. Then the nausea hit. I told Dr. L and she gave me something. The nausea went away and then it came back with more power. I started vomiting and couldn't stop. Vomiting with a spinal is interesting as I really couldn't get any force. D held an emesis basin and Dr. L suctioned me. It was bad. I felt so awful at that point.

 And then John was there, holding my hand and Fr. Dan started to bless everyone and I threw up during the prayer.

I heard Dr. O tell someone to break my water. At that point I was so sick and nauseous that it barely registered. I think I tried to tell John that Denali was coming. And then, somehow, I knew that she was born. I listened to hear if she cried. Someone said something along the lines of hello to her and used her name, but I couldn't tell if she was alive or not. I wanted to scream and ask if she was breathing, but I was afraid of the answer. And then she was in my arms. The first thing that went through my mind was that she was unbelievably beautiful. The second thing was that I wanted to do it again one day.  I told her hi and said that we had been waiting for her. I remember crying. She just stared and stared at me with huge, bright blue eyes.

Daddy trimming the cord

Holding Daddy's hand

She was the most gorgeous thing I had ever seen! The world disappeared and it was just her and I. I was vaguely aware of other people around us. I asked if she was dying and someone said she was okay and doing well. Fr. Dan came over and started to baptize her. A wave of nausea hit and I threw up all over John and probably Fr. Dan, too. I noticed that Denali's hands were blue and I told John that she was dying, forgetting that most babies have blue extremities. When I was finally convinced that she wasn't dying, I thought about trying to feed her, but I had no inclination to do so. I just kept looking at her, not believing she was there. She started making little noises and I was shocked that she was talking to us!  Then D whisked her away to be weighed and measured and all of that baby stuff that I never expected to happen. I couldn't take my eyes off of her from across the room!

Daddy and Godmother D

Finally, she was placed back on my chest and we were being wheeled into recovery. At some point, John took her from me and I became drowsy. I considered falling asleep, but I didn't want to miss any time with her! I also wanted to show her off to our parents and I was worried that she would die before they had the chance to see her. Someone gave me some ice chips and I started eating them gratefully.  After what seemed like an eternity, it was time to go to Mother-Baby Unit. John put Denali into the bassinet and asked if he could push her and D, I think, said that he was supposed to. We started down the hallway and I remember beaming at everyone as I was rolled by. Of course, no one paid the slightest attention to me!

Dad and Tom got into a discussion about which elevator everyone needed to take, and were scolded by D. We finally made it up to our room and it was chaos! I was getting attention (and water, at last!) and everyone else was passing Denali around. I couldn't believe that we had made it to Mother-Baby Unit! I truly expected Denali to die in the OR and here she was, clearly very much alive and meeting her family!

Mommy can't stop looking at her!

First diaper!

Meeting Grandma Kim

Grandpa Brian

Denali's Obituary

Denali LeeAnn was welcomed with great joy on December 27, 2013 at Providence Alaska Medical Center and passed away on December 30, 2013. She received the sacrament of baptism immediately after birth.  She died in the same manner in which she lived; in the arms of her parents and surrounded by loved ones. Her death was due to complications of anencephaly, a neural tube defect.
  She is preceded in death by her brother, Kellen. She is survived by her father, John and mother, Stacey of Anchorage, AK; grandparents Tom and Kim,  Brian and Carol; great-aunt Cynthia; uncles Aaron, Benjamin and Samuel, Derek and Hannah; aunts Christine, Marie and Jamie.
Denali's family requests that donations be made in her name to:
Duke Research on Anencephaly
www.giftrecords.duke.edu. Donors must write-in 391-2359.
or
String of Pearls
http://stringofpearlsonline.org/

Denali Arrived!

Everything has been absolutely crazy here and I've barely had time to catch my breath for the last month, but I wanted to share a quick update. Denali was born on December 27, 2013 at 1:17pm. She weighed 6lbs, 15oz. and was 18 inches long. She was the most beautiful, chubby baby that I've ever seen and she gave us three incredible days with her! We are so thankful for the time we had with our amazing little girl! We miss her so much, but we know that she is at peace and our hope is that we will be reunited with her one day!
  Thank you, everyone, for your thoughts, prayers, and love! Denali's life was filled with joy! I'm working on her birth story and I hope to get it posted soon!