The Stew Crew

All About Ava

2010-12-12T19:40:00.001-08:00

So way back in October, I was contemplating how to celebrate Ava's birthday--I was thinking of making some baby dresses and things and donating them to the hospital. But I was thinking small. Dinky. My sister Jen suggested doing a tree for Festival of Trees. Festival of Trees is a large scale fundraiser for Primary Children's Hospital. Ava was life-flighted to Primary Children's and died there. All of us were so taken care of there, and it is a special place for us. Anyone can donate, and the donations do not have to be large and invovled--check out festivaloftreesutah.com for more details.

So thanks to my ever helpful and loving sister, I decided to just go for it. Go big or go home, right? Thus was "All About Ava" brought about. "All About Ava" was all pink and white, and only contained items which could be used by little girls--the idea was to be practical and helpful to other struggling little girls and their families, while still being ovewhelmingly girly.

I had people that I dont even know donate things. Cute things. Handmade things. Dear friends made burp cloths, and helped decorate the final product. My ward Relief Society made quilts for the tree skirt, baby bracelets, beanies, dresses. Aunts gave pacifiers, other quilts, onesies with frilly bums (love frilly bums!)and pink sequined santa hats! One great grandma donated money, while another crocheted the most gorgeous dresses, burp cloths, booties, and sweaters.

Wade wanted to do something to help, but not being so literate in sewing, he bought a doll house kit. He worked for hours staining each roof shingle, cutting it to size. He painted every inch of it, and even hung tiny wreaths with pink bows in each of the windows.

The whole process was so exciting, and so emotional. There is something so beautiful about the countless gifts my blind-deaf angel gave to me that inspires me to want to give something, anything to other little girls.

Well, enough jibber jabber. Might start crying if I keep on like this. So here are some pictures of the whole thing:

--Men's Work--

--Who doesn't need a pink feather boa?--

--Helping Heatha, and you said you weren't creative!--

(Sorry Ash, we forgot to take picture with you and B!)

--Pink tutu from Michelle, shoes from Denise, bows from Jill, and shirt from Jaimee!--

--Grandma Stewart's handiwork--

--And some more from Grandma Stewart--

--Ava's onsies and hairbow--

--All donated by family, friends and ward members!--

-- Dollhouse and bench by Wade and I, Carseat Cover by Erin and her mom--

--Books from Nat and Nita--

--The finished product--

The feeling at this Festival was so cheerful and giving; I was really touched by the number of people that were doing trees in memory of their loved ones too. There were so many trees dedicated to little babies. There is something about losing a tiny innocent baby--something about dreams and aspirations for your child that inspires this urge to help their un-lived legacy be known a little more, to stay with us a little longer.

It was so surreal to have hoards of complete strangers file past the tree commenting on this or that, and read the story card that went along with the tree. These people were, in a small way, getting to know my sweet baby that they would never meet. It was very touching. It somehow validated her life. That may sound weird, but to share the reality of her life with others made it somehow more real than my private thoughts and memories of her that are constantly playing themselves in my mind.

Our tree was also highlighted very briefly by a kinda goofy guy on the local channel 4 news:

http://www.abc4.com/mostpopular/story/Festival-of-Trees/M0uRZ5Chgka-whRQT7-vHA.cspx

On the story card I wrote that in her life Ava brought families, communities and strangers together in love and concern for one another, and she continues to do so. This tree was only brought about through the kindness and thoughtfulness of family, friends, ward members, a mother who lost her own blind-deaf daughter, and strangers that only heard about Ava. When people care enough about other people to help, to act, that is beautiful to me. That is love. And I see that in people everyday. Thank you for showing me what Christmas is about.

Having the Runs

2010-08-30T10:05:00.000-07:00

The month of August has been chock full of runs. Runs of all kinds. We have had runs in the rain, runs in the sweltering heat. We run in the early mornings and sometimes we run at night. We have had runs that turn into walks, and runs that turn into sprints. We have run in California, Bear Lake, Park City, Morgan and Logan.

And then there are the other kind of runs. I will spare you the details, but suffice it to say that this month I got hit with the worst kind of sick I have ever had. I still have no idea what brought it on, but I never had so much quality bathroom time in my life. I didn't eat for three days, and I lost enough weight that women in my ward said I looked "frail" and that my clothes "hung off me". Those runs were awful. Miserable. Yucky. But I will move on to detail more exciting, if equally miserable, runs.

On August 7, Wade and I ran the Jupiter's Peak 16 mile trail run. This was our first long long long distance race, and we really did try to train well for it. We ran it with my brother Ben who was in town from Philadelphia. What kind of a family bonds by racing up a 3000 foot elevation change spread over 8 miles, and then runs all the way back down again, beating their respective knees into the steep dirt trails? We are really going to have to think of alternative means of entertainment.

{Since we all had synchronized brain farts and didnt bring a camera, we have no pictures of this event, so enjoy this pic of random guys struggling up the peak. Oh, we did kiss at the summit though. And by we, I mean Wade and I. Just to clarify.}

The thing that made this race even better was that, unbeknownst to us, this race is run primarily by very elitist runners. It should have been obvious; how many people do you know that run to the highest peak in Park City for fun? Needless to say, Wade and I were a little out of place with our cotton T-shirts and generic running shorts. We didnt have the sleek running gear, just our race tags pinned to our shirts and our farmers tans. We got quite a few looks, and some even commented on the fact that this was obviously our first race, our cotton T-shirts being a dead give away. We joked afterwards that we were definitely the orphan children of such a posh crowd, and we sure looked the part.

So we were outclassed, and even out ran by a few elderly people who looked deceivingly feeble. Yeah, there were quite a few old grandma ladies who beat us a by a good 15 minutes! Ben outran us by 40 minutes, but ended up with the biggest blisters I have ever seen all over his feet. Poor guy. Our final time was 3 hours and 26 minutes, which averaged about to be a little less than a 13 minute mile. Not great. But I was just happy to finish with our marriage still in tact--I can be a very grumpy runner, and Wade wasn't feeling overly cheerful either.

As we limped to our car, I told Wade to never again let me talk us into something so stupid ever again. Ever.

{Just in case you want to see how crazy this run really is, and sign up to run it next year!}

Two weeks later we found ourselves waiting for a port-a-potty with five minutes to go until the Top of Utah Half Marathon was to start. Wade and I had planned to run this race months ago because we wanted to do something to remember Ava by. It seemed fitting because we both feel that she demonstrated such endurance and patience. She taught us that we can do hard things.

And it was hard. My knee was injured, we didnt get a lot of sleep, and didnt train hardly at all since we ran Jupiter's Peak.

I always learn something when I run, and this race re-taught me to forget about comparing myself to others; just do what I need to do how I need to do it. It is so easy for me to get discouraged when some tiny little girl with horrible form and a tiny stride passes me up, or when I hear the wheezing old man behind me gaining. It makes me just want to quit. I almost just stop dead in my tracks because I feel so discouraged. But my run is about me. It is about my stride, my attitude, my will. Yeah, I finally learned that at mile 12.

{So sweaty.}

{I am glad that we have a picture outside of this house, since this was Ava's home while she was here).

{I really dont know what I am smiling about. I felt like poo.}

{My sweet husband stayed with me the entire time, though he surely could have outraced me. He kept saying that we had overcome everything else as a team, so we would run the race as a team too.}

Even though I am being a Negative Nancy in this post, the truth is that these runs are not all bad. In fact, there were parts of them that were inspiring and exhilarating. And as I sit here typing this, I realize that life is like that too. A lot of struggle, but there is joy in the journey if I can look for it.

I am very ready to take a break from distance training. It will feel so good to run a measly three miles tonight. I will relish it. Overall though, I would do these runs all over again. (Well, not the nasty bathroom run part.) But I think that doing these hard things have helped me become better. I will keep running, and keep looking to my baby girl to show me how to do hard things with strength and grace.

~Love you Avalee Grace!~

Creations!

2010-06-24T14:03:00.000-07:00

This post is indulgent, really. There is no need to read further because I will only be displaying (rather proudly, that is) my somewhat recent handiwork. How fun it is to create stuff!!!

First off: The Ava Pillows

I wanted to give a very memorable Mother's Day gift to my dear mothers. Wade thought of making pillows, and I thought of making those pillows out of Ava's clothes. We used two preemie onesies, one small flannel swaddling blanket and one burp cloth.

I love to make things, but am sadly deficient in skills. Thus, I broke two sewing needles, jammed the poor sewing machine countless times, and broke my resolution to avoid bad words more times than I care to remember.

Happily, the result was very worth the frustration. I cant help but smile everytime I see one, or see a picture of one. I put one of Ava's headbands around the pillow with a hairbow attached, just to top it off. I love that they are about her same size, and the sweetness and simplicity of them also remind me of her.

One of these days I am going to make one for myself.

And then, The Grandma Clock

I am going to be giving away a lot of these clocks for presents. (So don't be surprised when you get one! Just be sure to tell me the colors of the room you want it for!) I love that they are customizable for any decor, and for any person. (I also love the fact that these clocks are less than $5 at Wal-mart.) All we did was get scrapbook paper, then cut and layer until satisfied. Easy-peasy.

The Beginnings of a Book

2010-06-21T13:20:00.000-07:00

This is the beginning of my book. Since I am not a professional writer by any stretch of the imagination, I need your help. Please let me know what you think of it.

Lessons of Grace

PREFACE:

I never wanted to write a book. That was never my intention. But here I am, sharing the lessons of grace that I learned from my own Gracie girl with others. I have wondered why I feel so driven to share this story when I cannot shake the feeling of my own inadequacy in writing. It is because I have met death.

I saw the change that came over her body as death took my child from me, even as I rocked her in my arms. I felt the coldness of her body after death claimed her. I walked the snow covered path leading to her grave on the day that we laid her body in the cold, hard ground. I saw this; I felt this; I lived this. But this is only half of the story. What I have not yet mentioned is that while I mourned deeply for my cherished baby girl, I did not despair. Not because I am stoic, and not because I am brave. I felt no despair because there was, and still remains, no cause for it.

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help
thee; yea, I will uphold thee with the right hand of my righteousness." -Isaiah 41:10

I met death, and yet I hope. I hope because I felt that strengthening Isaiah speaks of. I felt that help. I felt it through my family, friends, neighbors, but most powerfully from that God who spoke those words. I know of Jesus Christ’s reality, and I know that He is aware of our deepest struggles. When I reflect back on my story, tears come to my eyes. Tears come as I realize that I, a 24-year-old woman who burns everything she bakes, loves the outdoors and sports, and sometimes forgets how to do basic algebra, walked through the hospital doors exiting to the parking garage, leaving the cold body of my tiny baby inside of it. I walked through those doors with floods of tears in my eyes, but just as much hope. I knew that my baby was safe, and that she was escorted by special spirits to the other side of the veil. I knew that she was no longer in pain. And I knew that I would see her again.

If God was with me through one of the most emotionally painful experiences I can imagine, then I cannot doubt that He is with me as I struggle with my own imperfections, my relationships, my finances and other aspects of daily living. That is why I write this book. I write it because I know that I am not the anomaly. I am not the exception. I am not one of God’s favorites, feeling His grace, mercy and strength as others are forced to manage on their own. God is no respecter of persons, and thus He is at my side and at yours, aiding and supporting each of us as we traverse this life.

So though it is often difficult for me to find the right words to convey my sometimes tangential thoughts and feelings, I continue to write. I struggle to balance the palpable emotional drama of this story with the non-tangible yet powerful truths. I keep typing, deleting, and typing again, hoping that readers can understand that in my moment of greatest pain and loss, I was able to feel greatest love from my God.

Therapy of Running

2010-06-13T22:00:00.000-07:00

I have fallen in love with running again. Most days, anyway. I think it appeals to me so much because it parallels LIFE, or at least mine.

It is such a physical reminder to me that my best is the only thing that counts, and that comparing to other people usually leaves me discouraged, ashamed, or prideful. (Most times it is a combination of all three.)

For example, it seems as though it often happens that I get halfway through your workout and think, "Well, maybe I will just give myself a break today", not because I really need one, but because I don't want to have to try anymore. Just then, some super-lean Machine decked out in Eddie Bauer gear and a bright pink Ipod gets on the treadmill right next to me and proceeds to run twice as fast as me with seemingly NO effort. What the heck?

I am left to choose: I either could play the victim card as fast as I could, step off the treadmill trying to hide my scuffed tennis shoes with my head down, making no eye contact, and mumbling something about feeling sick

OR,

I could run at the pace I need, finish my race, and then smile nicely as I pick up the brand new Ipod that the Machine just dropped. On the way out, I feel great as I try really hard to not envy the Machine's perfectly sculpted buns of steel.

Running is one of the few activities without an element of distraction. When I ride a bike or walk, I can do all sorts of things to distract yourself from the pain and discomfort. I can read, watch TV, talk to a friend, etc. Running is too intense...if you do it well, I concentrate on my movements, on my breathing (and on not dropping off the back of the treadmill). I love that opportunity to focus; that forced chance to feel the pain, the momentum, the effort, and the exhilaration of doing something hard, and in doing it as well as I can.

I love that running is all about the journey. Running is not about the destination. If it was, most people would choose a destination on the other side of the block. The process of the journey is where joy resides. What a great physical demonstration of life! If one cant find the joy in the little steps which cumulatively form a great journey, then the journey is all for naught.

So even though my buns are closer to being aluminum foil than steel, I am a believer in the therapy of running. Critics claim it to be a rather radical and extreme form of therapy. Some even claim to prefer the controversial shock therapy. But supporters claim that nine mile runs in the rain can be as rejuvenating as seeing your husband scrub the toilet. What do you think? Tie on those shoes, get out the gym pass, and jump on a treadmill. Feel free to talk about your childhood, crazy parents, lost love, etc as you run. Oh, and by the way, if that is you in the Eddie Bauer tank, you dropped your Ipod.

Mother's Day!

2010-05-11T12:02:00.000-07:00

Mother's Day was a really special day for me. I thoroughly enjoyed myself. Wade and I had a picnic breakfast at Ava's burial site, which we decorated with Gerber daisies. We sat up there for a long time as we talked and read books.

I felt very comforted and overjoyed to think about how safe Ava is and how much good she is doing. These pictures may seem a little light-hearted, and they are. We had lots of fun, and wanted to capture the happiness we felt.

So this is us trying to get Ava's flowers and name placard in the picture. It took a few tries before we got it just right. I love looking at these pictures because Ava was always wearing flowers, especially daisies, on her head.

The barn and shed that you can see behind me in the background are on my mom and dad's property. I love that she looks right down on our house, and that she is always by family, even when Wade and I aren't in Morgan.

One of our sweet neighbors told me that she walks the cemetery road everyday and always stops to see Ava. And my Dad often brings up more dirt to smooth the grave as it settles. I am so grateful that she is surrounded by so many loving people.

I have often thought of pioneer moms who had to bury their precious ones wherever they happened to be. To think of using a thin shawl to wrap the child in as they tried to dig a grave in the frozen ground, and then walk away--knowing they would never be able to visit this sacred place that housed their child's body is unimaginable to me. How heartbreaking that would be. I am so grateful that I am able to re-visit this beautiful spot and remember the fun and love that we did and still do share together. I am able to care for her in a small way by being able to keep her grave clean and protected.

Cherish the Little Things

2010-04-22T22:52:00.000-07:00

I remember lying on that hospital bed, feeling anxious and impatient. Though I had routinely come to Logan Regoinal Hospital for these non-stress tests, I was apprehensive because my sweet baby girl still in utero hadn't passed the a single one of the previous tests. In fact, most times, the nurses did not even know what to tell me as they looked at the negative test results. Sometimes they would get the on-call doctor to take a look, and other times they would direct me to get other testing done, such as a bio-physical profile.

One time, my own OB/GYN, a large, unfortunate looking man named Dr. Benedict, had declared the test results "weird and creepy". I did not appreciate his confusion, or his lack of tact. He eventually told me that he didnt know what to do and sent me home.

But that is all tangential; the point is that several times a week I found myself in the same room, lying on the same bed with the same monitors attached to my belly as I read the same phrase which was stenciled above the door-way. It read, "Cherish the Little Things".

That phrase has a lot of meaning to me. Perhaps it means so much to me because that baby girl who was so confusing to all the medical personnel was born four weeks early weighing 3 lbs. 11 oz. and measuring 15 and 3/4 inches. We called her our little pixie because she was so small she almost looked like an overgrown fairy.

That phrase came back to me as I danced with my mostly blind and deaf daughter who still weighed less than 6 lbs at two months old. We were making dinner in the kitchen together; she was attached to her life-saving oxygen machine and lying in a doughnut shaped pillow on the counter as I chopped up vegetables beside her. The radio was on and I couldnt help but pick up my doll-sized baby and dance to a nostalgic, but fun loving tune. That dance in the kitchen was a little thing, but I surely cherish it.

That phrase means a lot to me becuase it sums up my feelings about motherhood, about life.

That phrase means a lot to me because it is the first thing that catches my eye when I look at her headstone.

"Cherish the Little Things"

Lessons in Living: LOVE

2010-02-08T21:49:00.000-08:00

I am overcome tonight. I am not sure what exactly brought these feelings on, but wow--I can hardly see to type. I look at my memory book of my Ava, and I see her beautiful face snuggled against her favorite teddy bear. Wow, I miss her. But what I miss is her goodness. You could feel how good she was. You could feel her love, her patience, her peace.

I have learned so much about living from this baby. This baby who only lived for three months, and who never got to even see her room, with her name lovingly pasted on her wall, or her crib, decorated with a hand-made quilt and bed skirt. She spent more time in hospital than out of it and she never got to fully experience her senses because she was mostly blind and deaf. But she lived a full life. She lived it good.

These are the things I learned from Ava about how to live:

She bore her pains and difficulties without complaining. She only cried maybe five times her whole life. When she was first born I wondered if she had the capacity to cry, but she could--she just didnt. She grunted instead. These cute patient grunts that showed her discomfort. (Maybe I can learn to patiently grunt everytime Wade is late for dinner and forgets to call...)

She showed me that at the end of our lives, it doesnt really matter if we are the most attractive, if we have the newest phone, if we have read the latest best seller, etc. The only thing that matters in the end is how we love people. The time we spend loving, listening, understanding, snuggling, reading to, talking with, sharing and creating memories is all we have. (And sadly, we often give that up to selfish, fleeting reasons instead.)

She taught me that though we are all imperfect in our own ways, we all have something to give one another. The good that we can do comes inspite of, and often BECAUSE of, our weaknesses and imperfections. (Why do we try to hide them like they are the plague? We all have dirty bathrooms at some time or other, we all wish we could strangle a particular person every once in awhile, we all get scared of something, and we all hate being imperfect.)

She has taught me what a waste of time negativity is, in any of the many forms it may take. To be too critical of ourselves, our spouses, our co-workers, friends, neighbors, leaders, political groups, etc just robs us of our time, energy, and opportunities. (I firmly beleive that I can learn something from everyone.)

She taught me how to fight when life has become almost unbearably hard. Her strong spirit was tangibly bearing up, even as she was laying on the hospital bed in the PICU, shaking and trembling, her intestines punctured, her lungs full of liquid, her ventilator causing her to leak blood from her nose and mouth. She had such a feeling of strength, of patience, of effort as she laid there and looked at us with her one eye. What true strength was exemplified in that baby, and how she helped her Mom and Dad be brave through her example.

I pray every night that i can remember the lessons that I learned from this beautiful little girl. I cry because I am so humbled to reflect on all the moments that we shared together that were profound and spiritual. I think that true love is one of the most sacred feelings that we can experience, and conversely, the lack of love is most tragic.

How many times do we push away opportunities to love because we are too:

Busy
Scared
Self-centered
Lazy
Proud

If I can just remember that I saw real love demonstrated through a baby girl who couldnt see or hear or breathe on her own, who had crazy hair, who wasnt even on the growth charts, and who some would pity because she was "deficient". If I can remember to not really care who sees my messy house, or if my body looks like it did a year ago, or if I my hair is all in place; maybe I can start to make a difference in others' lives too.

Patience

2010-01-26T12:32:00.000-08:00

A friend of mine referred to this talk on her blog (thanks Devany!!), and I wanted to share it because it is so applicable to so many different circumstances in our lives.

Patience, Nov. 27, 1979, Elder Neal A. Maxwell. It can be found at http://speeches.byu.edu/?act=viewitem&id=621.

I found the following passages to be especially meaningful.

Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the "process of time."

Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient we are suggesting that we know what is best--better than does God. Or, at least, we are asserting that our timetable is better than His. Either way we are questioning the reality of God's omniscience as if, as some seem to believe, God were on some sort of postdoctoral fellowship and were not quite in charge of everything.

We read in Mosiah about how the Lord simultaneously tries the patience of His people even as He tries their faith (Mosiah 23:21). One is not only to endure, but to endure well and gracefully those things which the Lord "seeth fit to inflict upon [us]" (Mosiah 3:19).

Patience permits us to cling to our faith in the Lord when we are tossed about by suffering as if by surf. When the undertow grasps us, we will realize that even as we tumble we are somehow being carried forward; we are actually being helped even as we cry for help.

I love how Elder Maxwell ilustrates that everything in our lives works together for our good. I have felt that so many times during this experience, though sometimes I have to wipe my eyes so the tears would not distort my vision, and prevent me from seeing the blessings.

Empty Hospital

2010-01-25T10:46:00.000-08:00

Saturday was probably one of the roughest days I have ever had. We were going to SLC with my family, and since we were in the general area, we thought that we should return Ava's car bed to the U of U hospital, along with some donated blankets for the babies in the NICU. The trip started out fine, but pretty soon Wade and I were arguing about...um, something important, I am sure...and I didnt realize until we had gotten off the freeway at 600 south that I realized my heart rate was way up, and that I had a pit in my stomach. We were both stressed, just even driving the same route that we had taken that day we were frantically trying to get to the hospital in time to hold our baby for the last time. I remember seeing the blue signs pointing the way to Primary Chilidren's; I remember feeling like those traffic lights would never change. I remember sobbing as we pulled in, and Wade telling me that I needed to get out and run to Ava, and my panicked voice crying that I couldnt go in there by myself, that I needed Wade to be with me. So I stayed in the car and we pulled into the parking garage and gratefully found a spot a little ways inside. We both ran out of the car, tears streaming down our faces, and headed into the hospital.

But now we were pulling into the familiar parking lot of U of U hospital. Ava spent more time in this building than any other place during her short life. Wade and I were again crying as we pulled into our parking stall, and sat in the car for awhile, just crying and remembering about the scores of times we had made the journey to Salt Lake to see our sweet little angel. We thought of those times that we felt alone and hopeless; we sometimes wondered if she would ever be able to come home with us. Wade and I got out of the car, and went to get her car seat out. How come it felt so empty? It felt like I was carrying her coffin. We loaded it with the donated blankets--how ironic it was that we were returning an empty car bed, filled to the brim with blankets for other babies, hoping that perhaps their lives would turn out a little brighter and longer.

I have never felt so empty in my life. The hospital felt empty; it no longer had my sweet angel there. I had been seperated from Ava often; but I could always find her and spend time with her here, at the hospital. But not anymore. She wasnt here. From the beginning I was seperated from Ava a lot, but the difference now was that I couldnt go anywhere to find her and love on her, even if it was just for a few hours.

We walked up the steps to the hospital, and I remembered those times we had seen life flight helicopters making their landing on the roof of the hospital. Even then I had cried, imagining the heartache of the people involved. I didnt stop to think that someday the people involved would be my sweet little family and I.

We got to the revolving doors at the front, and were slowly walking in when a somewhat scroungy looking guy followed us, holding a cute little girl's hand. Suddenly we heard the man's cheerful and friendly voice boom, "Well, I guess a 'congratulations' is in order!" He must have seen the little car bed, and made the obvious, but wrong assumption. Wade and I quickly looked at each other, and could see the tears in our own eyes, but this sweet man was behind us and couldnt see our faces. "Yeah, it was just a few weeks ago I was here doing the same thing! Congratulations!!" Wade and I couldn't say anything but a quiet "Thank you". Once again, the irony was a little overwhleming.

We did have a good chuckle however, thinking about the sweet friendliness of the man, and what bad timing he had. But we just couldnt deflate the cheeriness in his voice by informing him that our baby had passed away. Oh, well. God bless whoever he was.

We took the elevator up, and we passed the desk where I checked in that day in October when our little angel came. My dad had been with me, and there was a very apathetic Spanish woman with hard to understand English who had checked me in. We passed the desk, and now we walked down the hallway leading to the NICU, and I had tears streaming down my cheeks.

So many memories. So much joy, and sadness, hope and fear had taken place here, with the backdrop of scurrying nurses, and beeping monitors. This time I couldnt just walk back to where my sweet Ava baby was, and take her out of her crib, and rock her, and put bows in her hair, and read books to her. This time my only business was to return an item. I had imagined the day we would return the car bed, and it was much different than this. I had imagined having Ava in a car seat, and carrying the car bed in the other arm. I had imagined being all smiles, and feeling like I was returning to friends, and being able to show our favorite nurses how well Ava was doing. They would play with her, and we would laugh and comment about the long seven weeks we had spent here. No, there wasn't any of that today. I quietly gave the nurse at the desk the car bed, the blankets and inquired after several nurses. None of them were working today, and wasnt that better anyway, since I could barely speak without my voice threatening to break out into a cry?

We quickly and sorrowfully went through the NICU unit doors for the last time, and it felt like we were telling Ava goodbye again. This time not just for the night, knowing that we would return again in the morning. This time it was for quite awhile--I dont really know for how long it will be, but I do know that it will be a sacred reunion. I feel such peace too, knowing that she no longer is under the care of rather imperfect, even if good intentioned nurses, and that her little broken body isnt impeding her anymore. What a sweet love she had, what a peace and a patience. What courage and strength.

I want to grow up to be like Ava.

Peaceful Sorrow

2010-01-19T02:50:00.000-08:00

The day that Ava died was one of the most beautiful days of my life. In fact, I have decided that if I were to watch a movie of my experience, I would have been much more traumatized than I actually was going through it. Now it was not pretty, and it was definitely not fun. And I hope that I never have to go through that again. But I will always be grateful that I was able to.

The day Ava died, we had a doctor's appt scheduled. She had been having labored breathing for a few days, and generally acting a little funny, and so scheduled an appt. We had just gotten Ava strapped into her car bed and were pulling out of the driveway when Ava started turning blue. I told Wade that he needed to get us there five minutes ago, and we sped as quickly as we could to the Budge Clinic.

It was obvious to us and her pediatrician that she was having real issues breathing. Dr. Visick made a quick decision, got a wheelchair for me to sit in and hold Ava, while we were wheeled into the ER. Her oxygen saturation levels were really dropping, getting into the 40s, and never getting above the low 70s, no matter what kind of oxygen mask they got on her. As we were shown into a room, I was told to put Ava down on the table, and from then on I was an observer to the chaos and drama that unfolded.

I think that during times of extreme stress the senses must be much more aware. I can remember what each person was wearing in that room, where they were standing, and what they did. There were two student nurses trying to get Ava's oxygen levels higher so that her brain would not be starved of oxygen. There was the ER doctor, the handsome sauve type that speaks with confidence with his arms folded across his chest, strutting across the room. There was the med student who quietly observed, the drug technician who was trying to calculate dosage for Ava while charting the dozens of drugs being pushed into her system. There were two respiratory therapists, both in those ugly, faded green scrubs, and two or three random people I was never introduced to, but joined when the standard crew needed help in the chaos. Our pediatrician remained there, and bless him, saved her from dying right there on the table.

Ava's oxygen levels were still dangerously low. Multitudes of labs and tests were run with contradictory results. Pneumonia, meningitis, tumors and other infections were all suspected, then ruled out. It was decided that a tube needed to be inserted into her lungs to allow a ventilator to breathe for her, becuase sick or not, her need for oxygen was urgent. The ER doctor took the oxygen mask off, and began to gently lift Ava's tongue and make way through her vocal chords for the tube. He needed to be careful to get the tube into the lungs and not the stomach, else her bowels would be pumped full of air. He got it in, and began to pump on the bag, giving her air. But no, her stomach began to expand, and it became evident that the tube was not correctly fitted.

This time our pediatrician tried. He was going to wait til she recovered from that last attempt, and her heart rate and oxygen became more stable. But she didnt recover. He decided that he had to act, and his voice became increasing more tense, and his posture more rigid. Her oxygen levels plummetted, along with her heart rate, getting into the low 20s. I could not breathe anymore either. Was I really going to watch my baby girl die right in front of me, without getting to hold her, love on her, or tell her I loved her? I wanted to leave the room, but I couldn't. I was most definitely there when she came into the world, and there was no way I wasnt going to be there for her as she left. I was sure she would die, and I was hearing Dr. Visick yelling "Ava, help me Ava. AVA, come on!" Just then I saw him triumphantly smile and give me the OK sign, and I took a long deep breath. Dr. Visick looked radiant. I have never seen someone so full of light before. Ava's oxygen levels came up and her heart rate returned to normal. I heard Charly, the male nurse, congratulate Dr. Visick, and I also heard Dr. Visick respond that he was blessed, and that it was not him that found the correct positioning.

By this time, the AirMed attendants from Primary Children's had arrived. It was time for Ava to be life flighted to SLC. Wade and I said goodbye to Ava and her amazing ER staff, and went home to pack a bag and jump in the car for SLC. We talked and cried and decompressed while packing and eating a quick lunch. We had said about ten different prayers by this point in the day, and continued to do so. By the time we got to Centerville, I again had a huge pit in my stomach; I had felt peaceful and strengthened by the Sprirt just minutes before, and now I felt sick. Just as I was telling Wade to stop driving like his grandma, my phone rang. The hospital social worker was on the line, telling me that Ava had been in cardiac arrest ever since she had been strapped into the AirMed bed. They had done chest compressions the entire trip to SLC. She was still in cardiac arrest, and the doctor warned that she could be gone any minute.

With tears in our eyes, Wade and I prayed again; this time just asking that we be able to hold her one last time.

Journal Writing

2010-01-14T21:38:00.000-08:00

So I was going through some things today, and came across a journal that my mom had given me months ago. It had only one entry in it, which I had written 2 weeks before Ava baby was born:

September 22, 2009

Dear baby girl,
It is your Grandma Cathy's idea that I keep this journal for you; what a great idea it is too, because it has been quite an adventure carrying you and waiting for you to join our family.

You have quite the personality already! When we went in for the 20 week ultrasound, you were playing games with us, or maybe you were feeling non-cooperative. Either way, the sonographer tried for about 1/2 hour to poke and prod you into moving until she just gave up. So we set up an appt. to look at your heart and brain @ 24 weeks.

We were so excited though; we were able to see your cute little face, arms and legs. And we couldnt stop smiling about the fact that we were having a beautiful little girl!!

Well, we came back @ 24 weeks, and the sonographer seemed a little perplexed. The OB then came in and told us that it looked like there was an anomaly within the heart, and referred us to a perinatologist to get a more specialized opinion. So a few weeks later we were able to see Dr. Schemmer, who confirmed that there was a heart defect, and who then referred us to cardiologist.

Dr. Su was the cardiologist, and he agreed that there was a heart defect, and, incidentally, confirmed my diagnosis (I had been researching the Internet) of "Tetralogy of Fallot". But, overall, your heart defect was not terribly severe, and optimally could be managed with only one surgery, which could be pushed back hopefully until six months of age.

Now all of this should have been quite reassuring to me, because the heart defect was not that severe, and the outlook of the cardiologists' was optimistic.

But I had these feelings that something else was wrong. When I had met with the perinatologist, I had felt the Spirit telling me that yes, there would be some complications, and there would be difficult things ahead. So when the sunny prognosis was given, it didnt match those feelings I had, and it felt uncomfortable, or wrong.

Well, we went back to the perinatologista few weeks later, and Dr. Schemmer found that your brain ventricles were right on the upper levels of size, and he spoke to us about chromosomal abnormalities, like Down's Syndrome, etc.

We decided to go forward with an amniocentesis, which tests for these abnormalities. Our only concern was that if you had a severe chromosomal syndrome, then we would re-evaluate whether you should have to go through the trauma of open-heart surgery, if your life expectancy would be a small period of time.

During this time, your daddy and I were finishing up work, trying to tie up all the loose ends that come with moving. We moved to Logan just a few days after the amnio so we still didnt know. The hardest part is, and continues to be, all the unknowns. The patience and faith required to to continue on, although the future remains so unpredictable is often more patience and faith than I seem to have.

Well, the results of the amnio came back--astonishingly positive. There was no indication of any kind of chromosomal disorder. So once again, there I was, grateful for your health, but confused as to why I felt those feelings so strongly; those warnings of my need to have faith and be strong.

So since we moved, I have had all new doctors. Dr. Andres found that you were very small, less than three pounds, while you were only 6-7 weeks away from delivery. He also noted that you hadn't been able to have variability in your heart rate, meaning that it stayed at a constant pace, even when they tried to startle you, or make you active. Your brain ventricles were also increasing in size.

I think that i will have to add to this saga later. But I want you to know that I love you and I am so excited for you to join our family. You have a reason to be here, and I believe that God sent you here to do a work. I love you, and think of you scores of times throughout the day. I have already cried over you, and feel very special that I get to be your Mama.

I will always love you for always,

Mom

Sewing the Broken Heart by Hand

2010-01-11T21:53:00.000-08:00

I am so glad that I didnt update this blog while Ava was still here...we had so much fun, and now I literally have all the time in the world to write down all the beautiful, traumatic, special and heartwrenching happenings.

Today I tried to take down the sweet little outfits, pictures and blankets that we used for the viewing held in my mom's house. Within a few minutes, I found myself clutching the blanket the hospital gave us after Ava died, crying and rocking myself and the empty blanket in the rocking chair. I grieved for this sweet little girl who I could no longer watch as she slept, the girl I couldnt snuggle, and those precious lips I could no longer kiss. Through the tears I noticed that the blanket I was holding to my chest had been hand stitched. It was sweet and very tender; multi-colored handprints with a pink border. The care of those hand-placed stitches really caught my eye, and I thought of the complete stranger who had cared enough to make this blanket for grieving parents, such as I.

I thought of the multitude of kindnesses that Wade and I have received from the hands of friends, family, even the Wal-mart employee...I felt so blessed and comforted to know that these special people have been God's hands in helping Wade and I through this time.

Then the hurt came stronger with the realization that nothing--not the hand-stitched blanket, not the hugs, the prayers, the meals, the cards, or the flowers--could take the sting away. I wished that whoever had so lovingly crafted this blanket could just as easily and expertly sew my heart back together, saving me the long hours of reflection, deep sorrow, and prayer that will be ahead of me. But then, what kind of a life would that be; a life devoid of feeling, of love, and the pain that often accompanies deep love. No, God forbid that I rid myself of the longing to hold my Ava baby again, orthe longing to hear the gentle sigh she would let out as she settled into a comfortable snuggling position. I will always love my little girl, and though I sometimes wish the pain away, I am grateful for the beauty that is always within a struggle, if we can just find it.

The beauty here is that I have no regrets about my time with Ava. I loved her with all my heart, and loved how I had to spend every minute with her. I loved that in order to take a bath, I had to move her bassinette, her oxygen, and her monitor into our tiny bathroom. Those baths were kinda tricky cause I had to get out several times to peek into her bassinette and check on her, but I wouldnt have ever changed it. I was definitely not a perfect mom, but Ava knows that I loved her with all my heart, and that is beautiful. I plan on seeing her again, and how exciting will that be!

Thank you to the Jennifers, the Heathas, the Ashleys, the Moms and the Dads, and the loving neighbors and friends who were, and hopefully will continue to be, brave enough to cry with us as we celebrated the beauty of life with Ava. And if I could offer up a favor, please keep calling and sending messages, even if I dont answer. It is difficult to answer the phone when grieving deeply.

I am home in Logan now, and I begin the task of storing the baby clothes, the toys, the empty bassinette, returning the hearing aid, etc. I have great hope for the future, and great peace, and great tears.

I am going to be writing often now; I am actually considering writing a book...and I am going to be using this blog as kind of a sounding board for that. Please dont be strangers, and feel free to contact me anytime. I love a good laugh, a good cry, a good conversation. And I love you all. Those of you with kids, please hug and kiss your little ones extra for me.

Progress at Last

2009-11-13T20:36:00.001-08:00

Look at me go...i am a blogging machine tonight! I wanted to let everyone know how well Ava is doing, and how thankful we are for everyone's prayers and fasting. So she is now at 4lbs 4 oz, and is eating 70% of her food orally. The fortifier that we add to the breastmilk in order to bulk up her calories was changed, and I guess it tasted pretty nasty, cause she refused to eat it. She needed the nasty stuff though, cause it really helped her diarrhea situation, and consequently her sore bum rash situation. But she is now changed back to a more palatable fortifier, and is doing great.

The doctors even started talking today about our plan to go home...it is really coming. I am guessing it will be within the week.

Also, the geneticist spoke to us today, and, as we expected, he is having a difficult time diagnosing her. The best indicators for syndromes become more apparent as children develop, so really this will be a discovery process, and we probably will not have answers for months or even years. But she will have another eye exam and a hearing exam very soon, so that will be helpful to us as we prepare for life at home. You can see her little eye open in the pictures, and she is doing a lot better trying to open the other eye. She really is looking great, and is becoming more and more alert and active. She makes me laugh all the time, and has such a big personality for such a little girl.

She is also acquiring quite the fan club--nurses come all the time just to say hello and to check up on her, even when they arent working! it is so cute to see...I bet they have parties at night, cause sometimes she is so tired and dirty, I cant imagine what she has been doing! but I am glad that she is having more of a social life than I am!

Mr Monk, my best friend...

2009-11-13T20:16:00.000-08:00

So I have grown very fond of Mr Adrian Monk, despite his many personality flaws; we have spent many a night together...and i didnt mean that to sound sketchy, so let me explain. Since little Ava is not able to breastfeed still, i am pumping for 20-30 min every two or three hours. Mr Monk has been such a loyal friend, and he almost makes waking up at 3 am enjoyable. I think I am starting to become a little more OCD, and I know the theme song by heart--and now everytime I hear the sound of my pump, the theme song comes to mind...behavioral conditioning. Anyhow, a big thank you to Tony Shalhoub for making me laugh out loud in the dead of night while painfully attaching myself to the merciless pump.

Bath Time!

2009-11-13T19:37:00.000-08:00

oh my goodness...I just wrote this ridiculously long post, and then I lost it...this is stupid. Well, I will now give you the reader's digest version, which you would have probably preferred anyways.

So Mom and I were giving Ava a bath on Thursday when Dad surprised us by stopping by as well. It was a regular party! So Dad became the photographer, Mom the official baby holder, and I washed her as quickly as I could because she sometimes has little patience for anything that does not involve food, her binki, or snuggling. Looking at the pictures, I am always surprised at how little she is. When I am holding her she doesnt seem that small, but in pictures or when she is held by someone else, I am reminded at how tiny she is. So yes, that is her we are washing, not a toy doll. And I am an amateur, so sorry about the sideways pictures and the subsequent crick in your neck...

Sleep over Party

2009-11-03T14:47:00.000-08:00

So tonight Wade and I get to have a sleepover with little Avalee at the hospital. We get to stay in a rather small, but private room for 24 hours to get a little taste for how things will be once we go home.

We are planning on having a party, and getting no sleep--between the eternal beeping of her oxygen monitor, the constant changing of her diaper (she still has terrible diarrhea, poops constantly, and has a terrible rash on her bum), feeding her every three hours, and my pumping every three hours...there is not going to be much time inbetween.

So Ava will be on oxygen until she has corrective heart surgery, which will be in about six months. I dont know how I am going to make it through; just think of an alarm clock going off randomly all day and all night, but this alarm clock is hooked up to your child, and affects her health...if the oxygen gets too low, she turns purple, and doesnt get enough oxygen to her brain, and if the oxygen levels get too high, her already strained heart has to pump against more pressure. Wish us luck.

This little sleep over is also going to be a kind of trial run for Ava to see if she can orally take all her food. Having different nurses all the time is kind of problematic when she is trying to learn how to take a bottle, so we are going to try to provide a little consistency to see if that will help her valiant efforts. There is talk that if she isnt able to orally take her food, then we will be looking at some kind of a tube feeding system for when we go home. So needless to say, we hope that her little body can manage this trial run okay.

She is gaining weight though, which is great; she is now a few grams within four pounds. We appreciate everyone who has been praying and fasting so dilligently for her. I wish that I could talk to and see more of you, all the people who support us and love us, but until we can do that, know that we really appreciate all of your efforts to help our family.

It is funny how one minute I can feel completely content with the situation, and a few minutes later feel overwhelmed...Just thinking about the demands that are going to be on our family, and the wondering why this poor little girl has to endure so many things, and the feeling of being so young and unprepared for this experience has been a trial of faith.

But then in some ways, it doesnt really seem like a test of faith at all, because it feels like God is right beside me, and, if I remember, has been from the beginning of this. When we first learned that she had a heart problem at around 28 weeks, I felt a prompting that told me to buckle myself in, and prepare for something hard ahead. It was a reassuring, though very somber feeling, and it did not try to sugar coat what was going to be ahead. I have felt that same feeling come back again and again.

It reminds me of when I was a little girl and split my head open on the food storage room door. Dad took me to go get it sewed up and he held my hand as the pain got worse and worse from the doctor stitching it up. I just clenched his hand and held on. Dad didnt try to minimize the pain by telling me it would go away or anything, he just let me clench his hand, and he was there for whatever I needed. I feel like my Heavenly Father is there in that same way, not pretending like this experience is going to be easy, and not trying to minimize it, but always staying by my side for anything that I might need. How I have appreciated that feeling, though I have not always appreciated the painful experience accompanying it. It's funny how I feel as vulnerable and young as i did getting my head stitched up as a small girl; I need that hand to hold, and that strength standing beside me.

I have had a lot of ponderings as I have gone through this experience with Wade and Avalee, and all of you who have supported us. Though this is enough ponderings for now, feel warned that this blog may be filled with all my thoughts and questions as we continue this difficult, but equally sweet, journey.

Love to you all. I wish I could spend time with each one of you, but until then, know of our love.

Avalee Grace

2009-10-23T21:12:00.000-07:00

Well, here is our blog...I have never blogged before, so what to say exactly, I am not sure. Wish me luck.

So Avalee Grace got here on Oct 5 @ 3:40 pm after I was sent to U of U hospital for an emergency C section. She was born at 3 lbs and11 oz, and was 15 3/4 in. I just cried when I got to hold her for the first time; I wasnt prepared for how much love I would feel for this tiny little person.

The entire pregnancy was rather complicated and filled with many unknowns about the condition of the baby. And now that she is here, the situation is still much the same: complicated and filled with unknowns.

We knew from early on that she had a heart condition called "Tetralogy of Fallot", which simply means that she has four different heart defects that run together. Her case is not very severe, but it certainly complicates matters. The cardiologists plan to operate when she is 6 months old.

Little Avalee has manifested some other anomolies: she had some quite violent spasms, which would cause her arms and legs to shake pretty consistently, her hands were clenched with her thumbs on the inside, and other minor physical things. She was assessed after she was born, and they judged her to be about 2 1/2 weeks younger than she was; she just didnt grow or develop well inutero, for some unknown reason.

She has been looked over by geneticists, neurologists, opthamologists, etc and the results are not very conclusive. It seems there are no chromosomal abnormalities, and no epilepsy. (And her spasms have lessened in frequency and strength, which is great.) But whether or not she has a syndrome or brain defects is unknown. The opthamologist reported that perhaps she is blind in one eye, and will only see in black and white in the other.

Other than that, the main concerns right now are that she is not gaining weight. She is still sitting at 3 lbs 8 oz, and has shown no real significant weight gain since she was born 18 days ago. The doctors are fortifying her milk in order to give her more calories, without increasing the volume of food that she has to digest. The doctors were talking today about the criteria of her discharge, and they said that they would like to see her get to be about 4 lbs and 6 oz before she goes home. The rate at which we are going now, that could be months...so prayers and fasting on her behalf would be hugely appreciated.

We just want to get home, though that will still be rather stressful, seeing as she will be on oxygen, and feeding tubes of some sort. But at least we would be together and be home.

We appreciate everyone's love and support, and have been so blessed to have friends and family like you. If you have questions, feel free to ask, and I will try to answer in this blog. Hopefully I have not made this too confusing or overwhelming.

We love you all!