Year 3.

Year 3.

After Claire's death, I had wanted to piece together the events that comprised her life. I had written in a book nearly every day along and we had taken multitude of pictures. For whatever reason, I never did it. I never wrote about her birth or the daily events beyond the "Claire Updates" blog. When I was moved to start writing the night before her birthday, I stayed up into the wee hours of the night going back and forth between the book and the file of pictures. I left out a lot of the medical details- things about blood draws, tests and more tests, echocardiograms, chest x-rays, medications, blood cell counts. I didn't write in the book every day and we also don't have a picture from every day, but piecing together what I do have felt good. My writing isn't perfect, and I'm not trying to win any prizes with this one. I also don't know why I needed to do this, but I know that it is for myself. I try to listen when I am moved toward action because it ends up being what I need. I'm not writing this for you, but if you are reading this I sincerely thank you. It means that you are walking with me. You are willing to step onto a path that most people would rather not traverse. I don't know what any of it means and I don't expect to. I had a daughter whose life and death I will never fully understand, but will continue to shape me for the rest of my living days.

*     *     *

I'm remembering Claire's birthday. Her birth. The beginning of her life and the beginning of my new life. The time leading up to Claire's birth was when my world began to be turned upside-down. This time has been on my mind a lot lately- because this is the time of year when these events were transpiring. The time before our lives had really and truly changed forever and before we knew that the unimaginable really could be. Claire had measured a little small at my routine 33 week appointment March 6th and my doctor referred me to Kaiser Perinatology which is housed at Providence St. Vincent. My 20 week ultrasound had showed that everything was normal. My doctor had said, "Congratulations! You're having a healthy baby girl!" At this ultrasound on Thursday, March 8th, however, it was revealed that Claire had limbs that were slightly shortened compared to her other measurements. The doctors and a geneticist did not have insight into this and postulated that it could be simply in the realm of normal variation which, posthumously, was concluded. It was recommended that we follow up with genetics after her birth and continue extra monitoring for the remainder of the pregnancy.

Two days later, Saturday morning, March 10th, I had my baby shower at Old Wives Tales with just a few of my close friends and family in attendance. We wrote little cards to welcome her:

"Dear Baby Girl, I am already planning fun times we will have. I wish for you all blessings in life. I promise to be the best grandma I can be to you. Know that you will always be loved and supported by your Grandma Vicki"

"Baby Girl! Your mommy is so excited to meet you in person. I've been feeling you for so long and now I can't wait to feel you in my arms. Sweet baby, we love you so much already. Love, Mommy"

"Dearest Baby, Welcome to this wild and crazy life! I wish for you all good things: love, resilience, hope, and joys large and small. Aunt Grace"

I received the onesie from my Mom which would become more important than we imagined that morning: "And though she be but little, She is Fierce."

And, of course, cupcakes...

That evening, as we prepared to put Julia down for bed, I began to have contractions. I was used to contractions here and there and I had them all throughout my pregnancy with Julia, but these were different. These felt scary. Like the kind that weren't just going to go away. After calling my doula and Kaiser advice, my Mom came stay with Julia while Jerre drove me to Providence... because they had a NICU. I remember the drive. Dark and uncertain. Triage at L & D. I stayed that night in the hospital and medication weakened and eventually stopped the contractions. We went home in the morning with an appointment scheduled for Monday morning for follow-up. I was instructed to go on bedrest. I frantically called my sub who I sincerely hoped would be able to start 6 weeks sooner than planned and feeling grateful when he accepted. Jerre started washing baby clothes.

Monday, March 12th, I sat on my bed folding these freshly washed clothes and felt more contractions come and go. They weren't so strong, but they were undeniably there, and I waited anxiously for my dad to pick me up and drive me to my appointment. A doctor who I hadn't seen before thoroughly answered all of my questions, but none of what we had talked about mattered. The examination revealed that I was dilated to 2 cm. I tried not to cry as I was given my instructions to get to Labor and Delivery. After only a short time there, my dad having gotten more than he had bargained for that day, I was told that I would need to be transported by ambulance to Providence. I lay on my side on the gurney riding 205, I-5, 217... the kind men explaining that they were "going around the horn" to get to our destination. No sirens, not an emergency, but as I was jostled by the road I felt as if we would never arrive.

Jerre met me shortly and I began several days of hospitalization. A doctor from the NICU came and explained to me what we could expect if she were born, but I didn't really believe that we were actually going to have a baby anytime soon. She explained that the typical discharge age was 36/37 weeks, so even if I gave birth soon she would probably just be there a couple of weeks. They kept me on the medication to dampen the contractions. Of course, I wanted to go home. I was miserable. Little sleep at night, nothing to do but lay there during the day. The IV drip was constant and the baby monitors strapped to my belly 24-7. I could only "unplug" to go to the bathroom. Claire's heart rate was displayed on screen as were my contractions. A constant soundtrack (Though I kept asking every nurse to turn it off) and stream of paper coming out of the printer. Most of my nurses were good, but I remember the few that weren't. I had visitors, but the around-the-clock experience was driving me crazy. I think the best part was having a 3-D ultrasound while I was there one day and having the ultrasound tech say what a truly beautiful baby I was going to have. "I've seen a lot of babies, and this one is really beautiful."

After a couple of days, the possibility of going home was on the table until I was examined and the doctor's gloved hand came away with blood. I wept. "We can't send you home if you're bleeding- what if something happened once you got there and you just had to come back?" I missed my daughter, I missed my bed. Jerre set up the crib at home and got the car seat installed for the baby we realized we might be bringing home soon. I was finally given clearance to take a shower when it became apparent that I wouldn't be leaving anytime soon. My mom brought me soap from the gift shop as I was allergic to whatever the hospital provided. Its smell brings back the memory of these days.  

By the time Thursday, March 15th came around, the contractions were becoming more insistent. I had been given steroids to help Claire's lungs mature should she be born and the necessary few days had passed for them to take effect. It was explained that they could give me stronger medication to continue to try to delay labor but it seemed like it wasn't going stop what was happening for long. Jerre and I finalized her name, cementing Claire Elaine. The evening brought labor. Jerre and our doula, Jesse, supported me as the hours ground on through the night. After a C-section with Julia, I hoped for a natural birth. I'm not a crazy hippie that is "Keep Portland Weird" about that stuff, but there's something about being able to say you've done it. So I did. There's a place that you go to, I guess. A place with a lot of low-moaning. No music, no TV. Lots of pillows. Not being able to drink water was the worst. A green sponge about the size of a square centimeter on the end of a stick was given to me to swab the inside of my mouth. Seriously? A sponge on a stick? At some point in the early morning, things seemed to stall and I asked if they could break my water to get things going. Let me tell you, seeing the doctors put on the equivalent of medical hip-waders is kind of hilarious. Okay, they weren't hip-waders. More like knee-highs. But whatever. I maintained a sense of humor and asked, "Was it as good for you as it was for me?"

The effect was immediate. The contractions became more intense. Yes, I asked for the epidural toward the end, but by then it was essentially too late. The point of no return. I had the urge to push and it seemed like forever until they could wheel me to the OR so that I could do so. The nurse told me to shut my eyes for the trip down the bright hallway. The OR was strangely quiet and somewhat dark. I sensed that people were moving around, preparing things. Finally, I could push. I can't even describe what this was like. Fire. Alligator jaws. Amazing terribleness. Screaming. Apparently the doctor told me to stop but I couldn't hear him and the nurse directed me to listen to his voice. I couldn't see anything. I had expected to be propped up like we see in the movies, but I was prone and kept asking, "Where is she?" I thought that this much pain had to mean that she would be here- that she should be crying any second now. I don't know what was happening at this time- was he guiding her out? Was he trying to stop the tearing? I must have pushed a couple more times and there she was.

The nurses took her to examine her first. I want to say that I remember hearing some faint crying. The first memory I have of seeing her was Jerre bringing her over to me. She was wrapped up like a little peanut, small and pink. She had a tiny hat on and was wrapped in a hospital blanket. Beautiful. It felt like a brief minute and they were gone, Jerre escorting her to the NICU while the doctor continued to work. I didn't know it at the time, but I had a 3rd degree tear and it took some time to stitch. Since I hadn't had any medication, I was feeling all of this and asked the nurse, "What is he doing down there?" Thankfully, the anesthesiologist offered me some drugs because I was a seriously crazy person. "It will make you feel like you've had a drink." YES. PLEASE. And yes, I will have ANOTHER.

I was taken back to my room. It felt so wrong not to have yet held my baby or even be in the same room. Empty arms. She was somewhere on another floor, some ambiguous place. I had no idea what they were doing with her. I was helped to the toilet and was finally given something to eat. After what seemed like an eternity, Jerre came to wheel me down to the NICU to see Claire. The wheelchair is behind me.

Claire could breath in these pictures. She was getting some oxygen and went on CPAP, which was normal for babies of her gestational age. The q-tip has a few drops of colostrum that I was able to express into a tiny vial. I soon began pumping every 2-3 hours, a regimen I maintained throughout her life, pumping at least 2 times in the middle of every night. The goal was 6-8 times per day, a normal feeding schedule for a newborn.

We couldn't know that these would be nearly the only pictures we could ever take of her face being so unobstructed by a ventilator. We couldn't know that the cries that she made in those first few days would be the only ones we would ever hear. We thought we had a lifetime ahead of us to take pictures and video. She was born at 12:12 pm Friday, March 16th... and her birth is now something I see as one of the most beautiful parts of her life.

I stayed at the hospital the requisite 2 days. It was torturous. I was staying in the post-partum wing surrounded by mothers with their crying babies. I hated that they could have their baby in their room and I couldn't. I spent time trying to get sleep, but Claire wasn't with me. I spent a lot of time at the NICU with her and certainly didn't want to leave.

I noted on her birthday, "She is sleeping- started phototherapy, catching up from a busy, tiring day."

Saturday, March 17

We met with Dr. Reiss from Kaiser genetics. His kindness and compassion were tangible. We discussed her shortened limbs, but he felt that this was not a huge concern. Her bowel movements were abnormal, however, and there was a concern that her thyroid levels were off. "They will follow up w/ her in the clinic- 6-8 weeks after taking her home. Kangaroo care with mommy- we had a nice nap together. Claire was very peaceful and I was so glad to hold her again."

"Skin-to-Skin w/daddy- she hadn't tolerated her feeding very well and didn't like being off CPAP. They will wait to weigh her later- she opened her eyes and uses her hand to feel things around her like her feeding tube. Had the hiccups :)"

Sunday, March 18th

Sunday, March 18

I remember waking up Sunday and crying. My room seemed dark and the day ominous. Today was the day of my discharge, but I would be going home without my baby. Other families with their carts laden down with flowers and gifts and the mom holding the baby in her arms while she was wheeled out. I with empty arms.

"S2S with Mommy for an hour :) in am. They also weighed her. 9:00 pm Visit with Carol and Katie. She has the catheter in. Was not able to hold her. No feedings now or oral care."


Monday, March 19 (Text that follows is from the book.)

Don't have 'the' answer right now... Claire moves her arms and legs very well. Her fingers are very slender and long- her eyes are closed and are kind of puffy, but her face is so sweet. She sticks her tongue in and out :) She is very calm when she is on my chest- she did 'twitch' occasionally :)

Tuesday, March 20th

Tuesday, March 20

Claire is yawning in her sleep- the first time we have seen her yawn! She also sneezes, puts her hands near her face, flexes her legs. The best part today was when the nurses took her off CPAP! She woke right up and was looking around with wide eyes. She looks right at mommy- she knows my voice and it is very evident. Her hair is so soft! I think she looks like my dad as a baby and maybe even Shawn. Yes, she reminds me of Julia, too, but I am getting more the Fairham vibe. Her looking at me was just the best, and she stayed awake for a good 10 minutes or so.

Dr. Rabine came to speak with us- her thyroid levels continue to be very low and she is on thyroid medication. He indicated that this would likely be for the course of her lifetime. Apparently she has inherited the Kuhns women thyroid! That was a little discouraging to find out, but it is what it is. What will be will be.

I was able to hold her without the CPAP and she did well- it was so nice to feel her hair and face.

She is continuing this afternoon, however, to have more dips, so the respiratory therapists are suggesting some sort of intervention.

I held Claire for an hour today and have also pumped here twice. I am starting to get some milk for her which I am excited about. Julia will be able to visit her tomorrow! Grandpa Kevin visited this morning and really seemed to enjoy her. Aunt Cindy called at lunch and sends her love and prayers- wants me to kiss her once for her! We also took more pictures when she was off the CPAP- I know people are anxious to see her. Grandma Donna called this morning looking for an update. Jerre talked with her. Amanda called last night. I think I will start a Facebook message to the 'important' people- not everyone needs to know everything. We will be leaving pretty soon and she is going back on CPAP now. Wish we could stay longer, but I know that Julia needs us at home, too. I'm so glad she can visit tomorrow.

Wednesday, March 21
Getting ready to meet Claire for the first time

Wednesday, March 21

Today has been a big day, Claire! I called last night around 9 for an update and things seemed fine, but when we got here this morning there was more concern. Namely, Claire had had quite a few respiration dips during the night and the CPAP had to be increased to 60%. There was some talk of putting her on a ventilator, but the blood count looked okay as well as CO2/O2 levels so that was not needed at this time...

Aside from all of the medical excitement, Claire seems to be resting and relaxing through it all. I know she is working hard and getting stronger. Dr. Rabine said that their immune systems aren't very strong at this point, so it's sure a good thing they can give her some help.

On a more fun note, Julia was able to come and meet Claire for the very first time! Julia had to be seen by the 'Childlife' program first- a lady met us in the waiting room and took her temperature and went over a few rules for her- always wash your hands, use a quiet voice, and stay with us. Julia did beautifully.

Julia wanted to see her right away, but had to wash her hands. I made sure that Daddy had the camera and then I lifted her up. She didn't want to touch her at first, but then held her hand and touched her foot. She said, 'Hi, baby Claire!' And then, 'She's kind of wiggly. I'll hold her hand so she doesn't wiggle so much.' Also, 'She's intsy wintsy teeny tiny.' Julia asked a lot of questions- 'What's that? What's that?' and we explained- tubes for her breathing, for her food, her name band, her belly button. We explained that some babies need these things and others don't- and that Julia hadn't needed them when she was born. Julia got to wear a dress that she picked out last night just for the occasion- blue polka dots with a pink rose rash, white sweater, and her shiny black shoes.

I was going to go home with them around 3:00, but with the big morning I really wanted to stay. This was hard on Julia because she really wanted to 'Go with mommy,' but hopefully this won't be something I do very often.

I've been pumping and getting about an ounce I'd say each time- it tires me out.

This was an emotional morning, but I think that the results of the tests and knowing about the infection are good things. Grandpa Kert visited for the first time... he was glad to see her of course.

I held her for a good hour, but she had a 'spell' at the end that scared me- she came around and breathed again and was crying, but I am learning to hate the beeping of the monitor. Not a good sound. Hoping the antibiotics help her- that was the doctor's thinking.

Thursday, March 22nd

Thursday, March 22

Called for an update this morning before going in. She had a good night- just a couple of decels... Was able to hold Claire for an hour in the morning when we got there :) I am pumping 8x/day and am getting better results this time around. So excited about that. Jerre returned tonight to hold her and be there for when they weigh her- this is when she gets all her 'gear' off and we can see her face/head. Wish I could go more, but I have to be here, too! Overall, a pretty quiet day there and this is good. 

Friday, March 23

Friday, March 23

A quiet day, I held her and she was very chill. Not much to report.

Saturday, March 24 

(Many medical details)... Then, a very encouraging poop! Best Dr. has seen so far- good job, Claire!

Sunday, March 25

Sunday March 25th

Called this morning for an update- overnight Claire's CO2 level in her blood was going down- got to the point when they needed to put her on a ventilator. The doctor says that mostly he thinks she is just exhausted after all that they have been putting her through the last few days. It is now breathing for her at 50 breaths/minute. She also received a blood transfusion because her hemoglobin was low as well... Claire looks tired, she has opened her eyes several times but they are very droopy! She is gorgeous and now we can see her hair and face more. Grandma Vicki is finally coming to visit this afternoon :)

Monday, March 26

(These were hard days. I remember a nurse taking these pictures of the three of us because we thought we might soon be parting with Claire.)

Tuesday, March 27
A series of pictures with the 4 of us- the only ones.

Wednesday, March 28

Thursday, March 29

I haven't written bcause we had a very worrisome few days with Claire- on Monday it became necessary to put her on a higher level of breathing support with another ventilator- and it was extremely scary when the doctor said that there may come a time when they are no longer able to support her. We were preparing for the worst. Kate Lore from church visited and got here in a hurry when I called and that was calming. We stayed here Monday night with me in a room and Jerre here with Claire.

Tuesday was essentially no change- holding steady. I stayed the night in the room again while Jerre was at home with Julia.

Wednesday no change again. Jerre was here while I went home.

Her chromosome array came back normal- 46 XX- Yay for you, Claire! Hoping she continues to make those baby steps forward :)

Saturday, March 31 

(I remember when the "Goal" section of the board was erased. It was simply gone one day. No more "Get off CPAP" or "Snuggle with Mommy and Daddy." We weren't being allowed to hold her. The goal, though not written, was simply to not die.)

Monday, April 2

Monday, April 2

Claire had a rough night Friday and then into Saturday. Her blood gas results showed her CO2 levels climbing despite the increases that were being made to the ventilator. Dr. Nicholson told me to stay close on Saturday- Jerre came up quickly leaving his Mom and Nancy- Julia went to my Mom's. Thankfully, Claire stabilized Saturday evening and then had a good day Sunday and into today. It has been a roller coaster of emotions, of course.

Claire has been agitated at times and that is the hardest thing- they have been giving morphine/adavan for pain/anxiety. A lot of the time, though, she is simply resting quietly. She does open her eyes- which is the best part. Today a little bit, and last night quite a lot. It is such a thrill to see her beautiful eyes and have her squeeze my hand. She's very puffy with the fluid she is retaining- poor kiddo.

We are trying to take things one day at a time and trust that she is getting the best care possible. We are trying to accept the unknown and surrender.

Grandma Vicki came today with Julia for a short and sweet visit- Julia did seem tired or not as perky as usual. Jerre said that it seems like it has been taking a toll on her. I will go home tonight and hopefully that will help.

We love you Claire, and keep trying to give you all of the love we can. I've been singing songs, too, and I hope you like them :)

Tuesday, April 3

Basically continue to try to wean the ventilator if possible.

Wednesday, April 4

Wednesday, April 4

Claire enjoyed her 'oral care' milk. She put her fingers in her mouth for the 1st time that I've seen. A quiet day :)

Thursday, April 5

Thursday, April 5

Thursday, April 5

Quiet day today- spoke w/ Dr. Nicholson- not too much new to report... Claire is looking much less puffy to me today and the Dr. also noticed this. Good sign.... Claire enjoyed her oral care given by daddy. I will come back this evening for her 8 pm 'cares' so that I can see her awake!"

Friday, April 6

Friday, April 6

Friday, April 6

(Finally a respiratory therapist told me that it was possible to hold Claire on this higher level of ventilator, and that we should push for that. It made some of the nurses nervous to move her and it took 3 of them to make it happen- in fact, this was the case throughout her life. We did speak up and were allowed to hold her again.)

Mommy was able to hold Claire for the first time in a long while today (nearly 2 weeks!) It was blissfully peaceful. She was awake a lot today, too.

Saturday, April 7
Julia visits with Grandma and brings Easter bunnies a day early

Saturday, April 7

Sunday, April 8

Happy 1st Easter, Claire!

Yesterday was a nice day with you, you had your eyes open a lot! Very awake. I held you again, but you had a big gas bubble in your tummy and you got a little cranky. Plus, there were quite a lot of visitors- Grandma Vicki, Grandpa Kevin, and Grace all came and you put on quite the show with lots of awake time. Mommy was pretty tired by the end of the day! Oh yes, Daddy and Julia came, too, after we went to the zoo. What a beautiful, sunny day it was! I really wished that you could have been with us.

Today is your very first Easter! We went to church and then had brunch, and now I am here visiting you. You woke right up when I started talking to you! I sang you songs from the hymnal from church and I think you liked them. I sang until you seemed to get tired out so now you are sleeping and enjoying your binkie. I also brought you a small cloth that I have been sleeping with so that you can smell your Mommy when I'm not here. I hope you like it.

I also met your new Doctor... she seems very nice. She is hoping to wean the ventilator a little bit at a time as you are able (this is everyone's goal!).

She is also stopping your food for a little while to give your tummy a break and then we'll try again later. In fact, your nice nurse, Anne, just turned your food back on! Yummers. Lucky you.

Now she is changing your diaper- you also had your catheter removed today since it had been in a long time. Your antibiotics have been stopped so they didn't want to set you up for an infection.

Your chest X-rays looks about the same- still patchy, no real change.

Your nurse is working on washing your hair and has done a couple of sections so you look much better! So soft.

Sunday, April 8- Easter

Monday, April 9

(I wrote this day of the hard conversation we had with her new doctor. We discussed a variety of scenarios that could occur given the length of time on the ventilator. I remember her asking us what we thought her quality of life was like and being really upset. Well, she is ALIVE. We discussed interventions that could be done in the case of an emergent situation. Compressions, epinephrine, giving oxygen, putting the tube back in should it come out.)

Monday, April 9

Tuesday, April 10

Wednesday, April 11

Dr. is supportive of holding her- she thinks that this is good for her and can help sick babies. Yesterday was okay, too- no real changes, chest x-rays have remained the same. Was able to hold Claire yesterday and she did great. She was not super awake yesterday but she did have a few moments of wakeful time. I sang her a few songs.

Mommy's Playlist

- My Favorite Things
- Take me home, Country roads
- Moon River
- Lilies/Fairy garden round
- Circle Game
- English Muffin (Punky's Dillema)
- For the Beauty of the Earth
- Morning has Broken

Monday was an emotional day- Dr. discussed options for rescussitation, etc. and what our wishes might be. Hard to think about. We felt like we'd been hit by a truck. Just wanted to go home. I also made the emotional decision to stop pumping. Just too little time/energy reserves to continue. I need to be able to take care of myself and both of my daughters and something had to give. Disappointed, but in order to survive this it was necessary. If Claire can tough this out, she can handle some formula! Lots in the freezers, too.

Tuesday- not much to report. My Mom's friend who is a harpist came to play for her and then we went to lunch.

I was able to talk to Cindy on Monday and that really helped. Tom Disrud also met w/ us yesterday and helped talk us through some of the decisions we may need to make.

Claire seems very restful today and is tolerating the Echo quite well. What a beautiful girl we have.

Julia and Grandma will visit today and then we'll have lunch. Brought the camcorder : )


Thursday, April 12

Her red blood cell count was low- may be because of the lab draws. Giving her a transfusion today to help this. Her WBC count was up today- Dr. remarked that her WBC count does funny things; it's up and down.

Thursday, April 12
I brought her blankie and took a lot of pictures this day

Her CO2 levels have been rising today- needed to increase settings on the ventilator. Dr. says that she didn't think this was urgent, but it is worrisome. She is coming off the steroid- maybe something to do w/ it.

We clarified the DNR orders and have those in her file now. I asked for and received a copy of the order. I plan to share with w/ my Mom and maybe Cindy so that others in the immediate family are aware of our wishes.

Grandpa Kert and Gina came today to visit and have lunch- they really got a kick out of Claire opening her eyes!

Claire has been a sleepy bug today- Mommy needs to get up here in the evenings so that I can see her wake up! Plan for Saturday to stay late.

All cultures taken a couple days ago have come up negative- only exception being the bacteria in the breathing tube. Likely that this bacteria has colonized in the tube but is not invading her tissues. She is not showing any other signs of infection, but will continue to watch her closely for any other signs.

No one was updating the board this night,
so I changed the date and her age.

There are other vivid memories of her life and our experience that month that are with me. I can't say when exactly they occurred, but they are ones that I cannot forget. During our first week when it appeared that Claire would be healthy enough to eventually come home, the very premature baby in the room next to us lost his fight. I hadn't spoken to his family, but I knew what was happening. The curtains around the room were drawn. The door adjoining our rooms, normally open, was now shut. I could hear his mother crying. Wailing. I knew there were others in the room; I had seen many coming and going. But it was only the mother I could hear crying. I remember thinking, "Thank God Claire is bigger. Thank God that isn't me." This was a prophetic moment. A thought that I would remember later when Claire was fighting for her life and losing.

Pumping was also a defining part of my time with Claire. It took much of my time and energy. At night, I turned on PBS and saw some really weird stuff at 2:00 am on a regular basis. I would also call the NICU in the night to get an update. I haven't been able to bring myself to remove the NICU from my phone contacts. I felt like it would be tempting fate to delete it during my pregnancy with Audrey. And now, it is one of the precious reminders I have of her life.

Claire had a bigger baby for a neighbor later on. She had been on a ventilator only briefly and then was taken off. The lactation specialist stopped by her room and enthusiastically began to help the mother breastfeed her baby. As I pumped and listened to the ventilator's constant thrum, I was sickened at the thought that they were going to be able to bring their baby home any day now. I asked for the sliding door to be shut so I wouldn't have to listen to the "milk nazi" (our nickname for her) any longer.

There was also the routine that we maintained each day. Get up. Get ready. Pack the bag. Get Julia to daycare. Drive 205, I-5, 217. Park in the parking garage. Take the elevator to the NICU. Get buzzed in. Wash our hands. Wait for the doctor. Eat lunch in the cafeteria. We became very well-versed in the hospital's lunch (and dinner) options. I had dessert nearly every time. Once we tried to pack a lunch, but it took too much of our precious time to mess with. Claire's visitors often joined us in the cafeteria. I called and texted from outside the NICU because reception was slim to none in her room. I remember several phone conversations distinctly. Calling the church and asking for a minister. Kate answering. I explained in just a few sentences through my tears what was happening. Her determined voice on the other end declaring, "I'm leaving in 5 minutes. I'll be there." Help in a time of need. Words I needed to hear. On the phone with my Mom or Cindy in the lobby. Seeing the trees in bloom and sunshine outside. How was it possible that the world was continuing when our lives had been halted?

The bells. The constant alarm bells that meant that Claire's oxygen was dipping. The first, lower tone was of warning. The higher, faster tone more insistent that she was in danger. The nurse who would come the adjust the oxygen or give her morphine or adavan to calm her. Claire did cry, but silently. This was one of the hardest things to see. Trying to sooth her with a hand on her head or our voices. Once, the nurse wasn't able to give the medication very quickly and the minutes seemed like hours and I wanted to scream myself. It wasn't long before I was hearing the bells at home. I thought I was going crazy. I knew the house was quiet, but I could still hear them ringing. It took some time after her death for the bells to completely go away in my mind.

Our nurses. The women who gave so much to Claire and to us every day. I remember all of their faces and wish I could remember all of their names. Kami. Stacie. Marcia. Diane. They called her "Claire with the hair." So much love in their hands and hearts. The doctors, too, who left no stone unturned as they frantically tried to diagnose her condition.

*     *     * 

I feel relief after putting this in print. Though I know I could never write something that fully encapsulated Claire's life or our experience, something about having at least this portion of her life recorded feels significant. Her spirit cannot be captured in words. I can never describe the feeling of her on my chest. When I ache for her, I feel it there. My body remembers her and feels her absence profoundly. When I look back on those days, I see a life lived fiercely. A lifetime of love and intensity in a few fleeting weeks, a depth in her eyes that could not be measured.