and i thought i was done

I thought i may be through with this venue fearing that I had nothing new to share and afraid that it was unhealthy, the thoughts and processes I was going through.

oh well...

Tonight i watched my young son's face as he slept.  As usual I was overcome with joy in the miracle of his health and a bit of fear that I couldn't always keep him from harm.  I also felt a wave of sadness as I thought of the beauty in his and his sister's faces and how I wonder how the faces of the twins would have looked as they grew.
I miss them so very much.

I finally went to a park yesterday and today.  I have been uncomfortable in the thought of going but I knew the kids would enjoy the time.  They did and yes I was also uncomfortable.  I feel such a longing and sadness when i see families with more children than i have.  My imagination turns to thinking of how the twins would have looked beside their brother and sister in the park, playing and exploring life.
I miss them so very much.

Sometimes I think of what I would be doing now if my pregnancy would have lasted to full term.  I wonder if the body has some imprint that it 'should' be pregnant right now.  I would have been resting a lot most likely being big with the twins.  I would have counted and folded new and old receiving blankets remembering their stories of my other children and thinking about the new stories they would hold.  I would have had my old trusty white wire shelves full of diapers and blankets because really that is all you need to get started with the little ones.

I see my family and am filled with gratitude.
I see my family and something seems missing.  We seem like such a smaller unit than we should be.
I see my family.  I remember my twin girls.  I hurt for the pain Zaria went through in her short earthly life.

I think the pain of losing a child is the greatest pain one can bear.  When I think of my deceased father, I miss him.  I wish he could have met my husband and my children.  I recall all the loving memories of my life with him.
When I think of my lost baby girls I am overcome with grief.
I miss them so very much.

making myself write or right

I had to revisit pictures tonight. I have been so sad, can I blame hormones and the full moon?  Probably not totally as i am seeing and feeling this grief process as a big circle.  Sadness to anger to sadness to numbness to disbelief and so forth, these are the days for me.  It is still quite astounding when I notice myself laugh and I catch myself and look at myself and think "what am i doing?"

Honestly, when I look back on the summer's experiences of losing my twin babies and the time spent in the hospital with Zaria, the word that is stamped on my brain is harrowing.  The pictures and glimpses I scan through as I do the mental roladex thing just makes me think: harrowing.  I am not feeling joy from the pictures; I feel so bad for Zaria's pain and existence in that hospital room.  I am angry with myself that that is the word that I associate with this/these experiences.

A few days ago Luke and I realized that she would be almost four months old or we realize that I would be in my final few weeks of pregnancy.

I have not wanted to write.  I feel like I was forcing myself and not wanting to expose myself to others.  I have had a 'make-over'.  There are some parts of the old me that exist but there is a new part added and the old part is colored with the new part as well.

The holidays....sheesh.


Added Note:
although I sat with tears last night by putting my jumbled feelings and thoughts into written word I felt lighter somehow.

really, it is me. part II

I flash upon the night of July 20th.  No reason for this to come to my mind other than I tend to have thoughts surrounding the birth of my twin girls and their very short lives quite often.

It is hard to comprehend that this really happened to me.  I ask my husband, "did you have any idea this would happen?" No, it had never crossed his mind, he thought we were safely along our way into the fifth month of pregnancy.  I ask my daughter "what are you angry about?"  Mom, really?  I lost my twin sisters this summer, our life has no planning and I don't know what is going on....that is what she said.  We give thanks before dinner with a special prayer at the end for the twins but my son will not include the name of his sister whom he met for the first and last time, right before she died.

My kids helping pack up mama's milk destined for other babies in NICU.

Today I visited with my aunt.  Someone who I had listened to just a few years before as she shared just a bit of her grief over her daughter's death.  At that time I knew I could only listen as I knew not what to say; I did not have the knowledge.  Now I do.

I look around her house at the many memories of her daughter.  So many memories that surround her.  I think wow, she is so lucky to look around and remember this story or that day.  Is she lucky or isn't she? Hmm, am i lucky or aren't I? Does it matter about the luck of these things?

Little brother touching his sister's foot.
I so wish I had a picture of me caressing her toes.

I hold my breathe and wait.  Will there be a shift and do i really want a shift?  I know I can't go on with this heaviness in my heart every time I rise from the bed.  It isn't fair to me, my children, my husband, my mother or even the greater world.  But I also want to savor the grief as it is a reminder of my twin babies.  The grief is a way to be with them and think of them several times a day.  I still want to do that and really I don't know that I couldn't.

See, she has a hold of those sweet toes! (Aunt C. and  my niece)

Today my sweet chubby niece was doing her baby thing by squinching her toes.  I love when they do that.  It reminded me of the special physical time I had with Zaria when I had to have her squinch her little toe to my finger so my day could be complete.  It just amazes me that someone so very small and that I knew for such a short time could impact my life, well totally change my life in a huge way.  Again I am so very thankful and so very sad.

Love to Zaria and Abigail

really, is this me? part I

Postneonatal death: death after the first 28 days of life but before one year.
Perinatal death: death between 22 weeks gestation through 7 days after delivery

hmm, ok yes i am reaching, reaching for something to occupy my mind.  Most of the time thoughts are just floating in and out of my head.  Most of them aren't marked more important than another.  It is just strange after living 37 years of your life one way and all of the sudden living a whole different way, in your head and heart that is.  Society suggests you keep going through the daily schedule of reaching and stretching and reacting and jabbering.  Jabbering about this and that, blah, blah, blah.  That is what it sounds like to me.

I just have to be.  I have to take a step at a time; if i step in gum then i look down, see the gum and scrape it off. If I step too slowly it is probably because I am daydreaming.  If I step into the woods and look up at the trees and see, yes, they are majestic then that is noted.  But I am not able to internalize the beauty of the trees, not anymore.  Now I just see and speak and wake.

I sound weird, yes, but that is because I can't find another word to describe my life.  It feels so different in my brain these days.

Going back in time: the earliest days

Going on a bear hunt..."
Remember this game in grade school.  It was so fun; a little exciting adventure right from your little desk in your classroom.

Tonight I am going on a memory hunt.  I am fearful I will forget my NICU experience and hence forget the moments I had with my little daughter.  A friend suggested I try bite size chunks of the adventure, bite, chew, swallow, wait.  So here goes...

I have been avoiding looking at our pictures from Zaria's hospital stay.  A couple weeks ago I looked all the time and I am not sure why the vacation from this habit.  I have wanted to look but I have had this feeling like I would need this HUGE amount of space to do it.  Pretty sure that implies not only physical space but an uninterrupted space of time and mental energy to stop and digest the thoughts and feelings.

not quite three hours old

Day 2, she really loved her Papa from the start

Looking back on the pictures from the first day to week of Zaria's life I am reminded of growing a baby plant.  This comes somewhat from the 'container' in which she was growing.  The nurse told Luke that the staff like to take home the little plastic covers from the beds once they are in disuse to create miniature greenhouse settings.  When I first saw Zaria I may have thought of her as this little science experiment.  Through my shock glazed eyes I saw a little alien hooked up to all types of machines, laying in her little house.  It was such a disassociated connection between me and her and the rest of her family.

There was no way to grow those connective bonds.  Somehow this was linked to touch and I was scared to touch her (and for good reason as it was probably torture for her little body at 23 weeks to lay on a bed, have stuff glued to the skin, adult fingers poking and prodding, and a tube invading your small mouth and throat.)  It took a few days to realize I would have to reconnect with her spiritually and/or mentally.  I would have to get super comfortable in my body and then look for her spirit.  Then I would try to tune in to her needs and see myself offering whatever the appropriate comfort should be.  This comfort could be imagining me creating a bubble of warmth and liquid around her.  It might be seeing my hands or the softest material I could think of supporting her teeny form.  Also there was a need to soothe her fears and skittishness and let her know that even when I was leaving her for awhile that support would still be around her.

When I look at these early pictures I think of the torture she must have endured.  Sure eventually she may have become more used to it as did Luke and I and others who saw her on a more regular basis.  Aside from the intense physical discomfort I figure she was super scared.  It is hard to contemplate how a baby that immature feels fear but I don't doubt that she did.  Reflecting on this piles on more fears for me.
What have we done to her astro spirit?  What have we saddled onto her being as it continues its journey?  Pain and fear...does her being remember this now or was that something left with the body when she died?

Then I so wish I would have done things differently, so many things differently. I am not even talking about all the changes I would have made prior to birth but the way I 'gave' to her at the hospital.  I wish I would have stayed beside her bed even more (especially in those early days).  I could have spent more time tuning in to her and tending to her comfort.

I see the pictures of me bedside and try to remember what was I thinking.  I know I wasn't thinking that Zaria would die soon but I am not sure I was able to think of her as my 'baby'.  Maybe it was that the shock lessened and I was able to tune into my maternal side, my core.  She did so well that first week of life.  Everyone could smile and look and we didn't have to discuss all the problems.  I know that in many ways I was disengaged from the situation.  I figure the reality of "it did happen to me, to us" was still far from being accepted.

Drop a penny in for me

I wish....I wish.....I wish

I have been finding myself saying this quite often lately.  My memories will flash through my head out of nowhere and they all are so bittersweet.

I was singing songs with my kids yesterday and I couldn't think of any that I knew all the way through other than Christmas songs and lullabies.  We sang a few tunes from each of those genres and I began sharing with the kids where I learned the lullabies or which ones they seemed to like.  Then I said "I wish I would have sang more to Zaria in the NICU."  Why didn't I?  Why was I more reserved most of the time she was there?

As we lay in bed tonight before starting our reading my little boy asked what I wished for?  The first and only thing I could think of and tell him that I wished I was still pregnant.

The first and one of the few times my husband and I had alone together when my tummy was big with babies we sat on our couch and watched a movie (last movie I have seen as it brings back this memory).  I lay his strong, hard working hand on my belly to feel his babies move and kick.  I remember this so clearly and I wish we had more of these memories to hold.

I wish I would have known more about premature labor.  I wish I would have demanded the OB leave 'twin B' in the womb since my body was closing up anyway.  I wish she would have had more time to grow before she had to take on the outside world.

I wish I was a better mother.

I wish I had a chocolate bar.

I pray I can give birth again, safely, and add to my family.


PS I do want to share this book as all of the poems can be turned into great little songs.

CATCH ME AND KISS ME AND SAY IT AGAIN
by Clyde Watson

This is a poem turned lullaby that we sang to Zaria before her short sweet life ended:

Hush a bye my darlin' don't you make a peep
Little creatures everywhere are settling down to sleep
Fishes in the millpond
Goslings in the barn
Kitten by the fireside
Baby in my arms
Listen to the raindrops
Singing you to sleep
Hush a bye my darlin'
Don't you make a peep.

Zaria as we sang a goodbye lullabye.

another day...

Yesterday I was trying to drive down the road and felt something weird on my lips.  I say 'trying' because I am such a mush brain with my new identity as a grieving mother that I will end up forgetting where I am or making wrong turns on a familiar route.

Well I realized the weird thing on my lips was a slight smile.  Funny, huh, or not funny.  The last couple days I have been having such negative feelings, ones I haven't seen since being a teenager.  Thoughts like "I hate my life" and "I care about nothing" and thoughts I can't even really touch and put into words.

My life circumstances are dawning on me, meaning I am stepping into another layer of my sphere of consciousness.

Since the premature birth of the babies and their subsequent deaths I have only been feeling the overwhelming grief and loss of Abigail and Zaria.  Being back in N.C. has brought on the realizations of what stage I would have been in my pregnancy and how the girls would have been born around Thanksgiving.

Our little nuclear family escaped to the shore for a few days to be alone together and spend time healing and grieving on the sandy shore, looking out over the expanse of ocean.  It dawned on me during one solitary walk right after the sun set and as the moon light shone over the waves, that wide open spaces aid in my healing in a way that other spaces do not.  Likening this experience to my walks in the desert in Reno or the couple times I was able to  reach a meditative state....open, empty spaces are good for the soul. 

Back to the smile....the reason for it being so foreign is that I have spent two days in an emotional uproar over losing all the small things in life.  I have lost the ease of my food systems that my family spent years setting up. I have lost the momentum that our new small business had gained.  I have lost my home and lost sight of most of my belongings that friends had packed for me.  I lost many of my benefits of my pregnancy Medicaid insurance. I lost my cat.

I have lost hope.  The hope that was burning so intensely for two months (and before when I carried the babies in my womb and even before that when I knew for some years that we would have more children).  I do hope for my body to carry and deliver and nurse more children.  Although that hope is dull because my attitude is dull (at least at this moment).  Today is the calm after the storm...

East Coast Style: a memorial for our TwinFlowers

Today one month has passed since Zaria died in our arms.  I can't say that the hurt of the loss has lessened or the huge array of emotions are not as strong.  Perhaps a difference is that they aren't as foreign as they were that first week or two after her passing.  Finally, after being back in NC for a week and a half, I have set up a special space in our room with their sweet mementos.  It really soothes me to have these things available to see all the time, makes me feel more at home.

Yesterday we had our third Memorial for our twin baby girls.  Another beautiful setting, another group of loving community and another ceremony that we will take bits and pieces from to savor over the years.  I had hoped for the gathering to partly be a big thank you to the folks that have been sharing their love and time with us during the last couple months.  I wanted the chance to finally do for all of them.  But it wasn't to be as I had thought; friends and family stepped forward to help create the scene for a wonderful party full of good food and friends and special treats.  Luke and I showed up to provide a slide show, the girls' mementos, and hugs and tales that we have long wanted to share with folks.

so many emotions in this string of pics 

The crowning piece of the experience was the children's part of the ceremony.  They were given the opportunity to create boats in honor of the two small sisters.  Using natural ingredients the kids decorated bark boats with flowers, seeds and such adhered by candle wax.  We all trailed down to the river and big sister and brother led the procession in sending these symbols of life into the water.  It was a sight for my heart to savor:  beautiful children in our life, families lining the banks, and a beautiful background of nature.

A few of the families stayed to camp in the forest.  The kids put on shows and went crazy and parents gathered to sing and play music and commune around the campfire.  The following day we made our way back to the river.  We saw a couple boats from the evening prior and I sat on rocks in the river to reflect over the preciousness of life.  We are such hardy creatures and yet also our mortality leaves us being so fragile.  So many thoughts, so many tears shed and choked back, and so many days to face without our baby girls.  It is hard to figure out how to do this?  How do you make a plan for your emotions?  stay tuned....

Letter from August 29, 10:18am/PST

This letter begins a series of interactions between many friends in a google group to keep folks updated of our life changing adventure.  The order of the letters is reversed chronologically.

Trying to heal

Today I am not packing my lunch for the hospital visit.
Today I am trying to alleviate breast pain and only pump a tiny bit and explain
this process to the kids.
Today I am not going for my morning walk because I don't want to be alone with my thoughts.
Today...I miss her so very much.

Look forward to hugging you all (one at a time) when we meet again.
Thanks again for support and understanding.

Letter from August 28, 1:15pm/PST

Mama's writing from early morning after watching papa and daughter.

Zaria Seren Hope

Born to this Earth and her parents on July 21 6:35 in the morning

a radiant morning star.

Leave this Earth and her parents on August 28 Sunday sometime
around sunrise

a radiant morning star.

We must allow her the health and freedom to leave her dying body and

continue on her soul's journey. We will call on ancient loving guides

to accompany her. We, her parents, willingly set her free from the

pain and hardship of her dying body.

We love, have always loved and will continue to love this sweet strong

soul who honored our lives with her presence.

Her loving brother has porclaimed and taught us these words with each

meal's blessing:

"LOVE TO ZARIA!"

Letter from August 28, 1:11pm/PST

Luke and I stayed in a little room within the NICU for three days and
nights to be close to our little girl during the final days of her
earthly life. We spent time in this room and in the hospital garden
arguing for her life and trying to understand how we could allow her
breathing tube to be withdrawn and finally how we would know it was
the right time.
Zaria was not going to go easily and we realized that a 'natural
death' led by her was going to be very physically painful for her and
emotionally painful for all of us in the NICU. My friend Erin said to
me as I cried "How to I end my child's life?!", she said write your
thoughts and perhaps some clarity will come from this.

Mama's writing:

Earthbound on July 21, 2011

Zaria Seren Hope

We love you

We cherish your commitment

to spend time with us

Parents that love her

Luke & Hope

Sister and brother who adore her

Demetrius and Delta

Friends and family who support her

uncountable

July 27, Saturday a bit past midday...

NICU (Renown Regional Hospital, Reno, NV) is quiet and expectant.
Papa is soothed by the comfortable weight of his daughter laying on
his chest, her tiny fingers grasping the "carpet" of chest hair on his
breast. He hums softly to her as Mama leans over to nuzzle and kiss
her soft head.
Nurse Jan assists our daughter in her comfort from pain as she
administers morphine every four hours. We are living in the
'protective' bubble of the hospital. Mostly loving the cherished time
we are spending with our youngest daughter; maybe somewhat biding
our time.
When is it time to let go?
How to I ever totally convince myself that I have to let go of my
Zaria's earthly presence?
If and when the time comes will I have the presence of mind and
self control to call on the guides to help her on her special way?
How are my other two children? Are they able to successfully
weather these changes without our physical presence?
Should Luke and I talk of this? Do we ask questions and who do we
ask? Are there answers that we are open to hearing?

Letter from August 28, 12:42pm/PST

Reno. Yep been a life changing trip here in the deserts and high
sierras for the past 14 years. I was drawn out to the area on a whim
and a friend. Made some money, lots of fun friends and met my husband
to be. Once as I was leaving Reno my father died and a friend I would
not have thought to call was the one to be my strong shoulder when I
needed it late at night.
On July 3, 1999 I talked a young dreadlocked beautiful boy into giving
me a ride to a music festival. Four months later I married him in his
parents' home in Sparks outside Reno. I knew he was the right fellow
as he took me on wildflower walks in the mountains and charmed the
foodie in me with 'good gig soup' and 'carob treats.'
He and I visited family and friends in Reno at last once every year.
We healed from hard work and sometimes made difficult decisions as we
walked in the desert behind his parents' home. I attended two
weddings and two births in Reno enlarging my family and support
network to include my brothers and sisters in laws and my niece and
nephew.
And of course most recently was the fateful trip where I bore my twin
daughters so early, too early in their sweet lives. At that point the
trip in Reno just became even more intense. From day to day I healed
my physical wounds of birthing while we rode an emotional roller
coaster watching our little Zaria's life unfold. I was confused by
greetings of solace for the loss of little Abigail followed by
congratulations for the birth of my daughter Zaria.
From the early 'honeymoon' week Zaria introduced us, including the
staff at the NICU, to what a strong little fighter she was. She faced
chronic lung disease, grade 3 brain bleeds, and heart surgery within
the first few weeks of her stay. Every time she met these obstacles
we were all surprised because she didn't want to show us any signs of
her distress.
As she healed from each trauma we breathed a collective sigh of
relief. We spent hours and hours at her bedside peering into a
plastic womb and getting to know our littlest daughter. When possible
we held her head and feet as she spread out her toes and caressed our
fingertips as we sought to soothe her and her us.
Finally we met the scariest and biggest challenge, the life
threatening gut disease NEC. She didn't show a sign as most babies do
but eventually a bloody diaper and failing body signals finally sent
her back to the O.R. to have a little over half of her gut removed.
We waited and loved her for just a very few days before more signs of
NEC were detected. This was only showing on a lung and gut xray (she
had now gotten over chronic lung disease) as she showed no signs of
deterioration and was revisiting the characteristics we saw in that
original 'honeymoon phase'.
After holding such strong hope for our girl through all the 'you must
give up care'-s for her from the doctors, we could not allow our minds
to fathom that she had more of the disease. The surgeon finally
realized that it was futile to convince us as we saw the glimmer of
hope in her words of "most likely will not live". 'Most likely' can't
convince two loving parents that want with all their hearts for their
daughter to survive the NICU and come home with them. The doctor
realized she would have to show us proof.
After an exploratory bedside surgery and a photograph of the
perforated gut and decaying tissue we finally begin to swallow our
hope for saving our daughter.
Still she showed great health in her micropreemie way. We were given
free reign of holding her and spending hours of 'kangaroo car' or skin
to skin loving. Yesterday we starting noticing the signs of health
deterioration and watched as she began to wince more in pain. We
spent one last night holding, singing, loving, cherishing and getting
to know our daughter.
On Sunday morning on August 8 we realized we should let go (i couldn't
use the term 'withdraw care' because what mother can really withdraw
care of their child?)
Luke and I stood by her bedside singing lullabies and caressing and
reassuring our daughter of what was to happen, how she would be
released from the pain of her body and would always be loved by her
family. We told her how countless people who had not even met her
loved her and supported her journey. The nurse removed the tape
holding on her breathing tube and Zaria quickly yanked it out of her
mouth.
Finally! She had been trying to do that for a few days. I held her
warm body to my bare chest and soothed her fears. She lay in Luke's
lap at sunrise by the window; and as her heart faintly beat she
lightened our loads as she flew away home. We studied her beautiful
face (looking much like her brother's), stoked her reddish brown hair
and held her little fingers.
How do we get through the countless moments of sadness, desire,
uncertainty, and loss...one moment at a time.

Letter from August 27, 4:14pm/EST

Letter from a good friend...


I got her permission to post a bit of an update, as she has not had
access to the internet. Unfortunately, Zaria's condition has worsened
over the last few days. The necrotizing entercolitis has continued to
progress beyond repair.
They have been staying at the hospital for a few days to be  with
Zaria as much as possible, and will continue to do so for the time
being.  Right now cell phone texts and calls are the best way to
communicate. She said all of our support has really helped this whole
time, so keep sending the love.
--Erin

Letter from August 24, 9:52pm/PST

Finally got to hold Zaria for almost an hour. She loved it and so did we.
Last couple pictures is of Luke giving Zaria love and comfort.
She loves this as well.
Tough times but we remain hopeful.

Letter from August 23, 11:13pm/PST

Zaria was finally resting better today.  They have her on a slow drip
pain med with occasional doses of morphine.  I did not see her cry
during the 4 hour visit I spent with her today.  An EEG was performed
to look for any seizure activity (there was some varying signs of
this) but all results were normal.  She also had a head ultrasound
today and no more bleeding or damage was found with the brain.
Our big hurdle will probably be the short gut syndrome that she was
left with after the surgery took away over 50percent of her gut.  The
surgeon was hopeful that she would regrow some length and surface area
so more nutrients will be absorbed when we resume feedings.  In the
meantime she gets her nutrients from TPI and lipids.  Unfortunately
long term use of the IV fluid TPI can damage the liver (although this
can also be reversed).
Luke returned for his early evening visit and his voice opened her
eyes to look at her papa.  He told her that it was her mama's birthday
and he saw her smile.....

Letter from August 21, 6:09am/PST

Hard, hard, hard!  This was so very hard but our daughter is a
superstar. 
I have had my fears about Necrotizing Enterocolitis (NEC) all week,
since they started adding a 'fortifier' to my breastmilk.  I know what
I produce for her is specially made for her.  Most hospitals feel that
these preemies need more of a boost to nutrients and calories to help
them grow and deal with the outside world.  My hesitancy was real but
then what really sealed the deal was the ingredients: cows milk, soy,
and corn sugar.  I knew that this little premature gut did not need to
deal with substances that many more mature guts have issues with; plus
you just look it up on the web and there are so many warnings about
preemie fortifier and NEC.  I did not put my foot down as (1) she was
doing so well and (2) it is hard to refute the findings and say 'no'
in such an alien environment.  Hear some guilt in my voice?!
That aside because we don't know for sure what started Zaria on a
downward spiral Friday afternoon.  She was great; in fact I had gone
out to call Luke and Mom to fill them in on how well all her 'numbers'
were for the day.  Upon returning to a scene that was not normal for
the afternoon (many nurses and also the xray tech and his machine) the
nurse informed me that she discovered a diaper full of blood.  Ok well
that is just freaking scary and enough to close up your throat and
drop your heart quickly.
Still xrays didn't show anything 'big', maybe a suspect place in her
gut but still all her 'numbers' were great.  So maybe it was just some
lining sluffing off and antibiotics and no food were prescribed.
Next we were requested to meet with the night doctor and found out her
health was quickly deteriorating.  He gave us the 'picture'(literally)
of what was happening and could happen and the larger doom and gloom
speech that we have heard several times before in the NICU.  I
returned home to put kids to bed and Luke stayed with her until after
midnight.  At 3:30am I got a call saying there was indeed a
perforation and surgery would happen in the next few hours.  Another
call around 4 called us into the hospital quickly for a 4:45 surgery
time.  Thankfully we have this awesome family support and Luke's bro/
sil met us at the hospital to help support the kids.
She still 'looked' like a picture of preemie health as we talked to
the surgeon and waited for what would happen next.
The RT (respiratory therapist) gave us the heads up that she was being
returned to the NICU and the kids were able to finally see their baby
sister as she rolled by them.  They were so happy and Demetrius says
with a grin "she is so tiny".
During the procedure a good portion of the gut was found to be
necrotic (dying/dead).  A large portion of the small intestines, the
right side of her large intestines and the appendix were removed.  The
two ends are then adhered to the wall of the belly.  The hope is (what
happens in many babies) is the intestines regrow a good portion and
they are reattached once she weighs about 2 kilos.  No feedings for
quite awhile instead she will grow on IV 'nourishment'.  We may not be
out of danger of more necrosis although it is more rare for this to
happen.
The next several hours we cryed and prayed and worried through the
dire recovery process.  Her potassium levels were super high and the
kidneys took awhile to recover from the drop in blood pressure and
other reasons.  Finally as we both sat and 'held' her kidneys in our
hearts and hands (energetically) she begin to pee and rid herself of
the deathly overdose of potassium.  My good friend and healer Shannon
called at just the right time to help me recover my spirits and gave
me tools to help myself and Zaria tap into all the healing energy of
the earth and the love around us.  This was so helpful to just sit by
her bedside and close my eyes to all the machines and bustle around
me.  I just spoke to my daughter, soothed her and helped her relax.
Luke held her hand through the more intense blood draws.  When I
looked at this team of women who were working together to help my
daughter (a wonderful nurse, rt, doctor, support nurses, pharmacist) I
was so encouraged; yes it wasn't what I would prefer: a team of
midwives and other women aiding us in our home BUT it filled my hearth
with thanks.  These women worked tiressly and with positivity, empathy
and love for our daughter and us.
FINALLY the liquid gold started flowing and Zaria began to move the
potassium out and we all watched the level drop.  Amazingly her oxygen
needs were great the whole recovery process and other numbers were
looking good.  We finally left the hospital during shift change at 6pm
Saturday evening to meet up with the kids and recover from this
experience.  Luke returned after a visit during the wee morning hours
with many tidbits of good news and our little girl is currently
resting and recovering well.
A side story:  our day nurse worked hard and I mean hard for her
entire 12 hour shift to serve our daughter.  Come to find out Marilyn
was on vacation in Reno 30 years ago from the Bay area.  She was
pregnant but had gotten the ok to travel.  She went into premature
labor with her daughter and they spent three months in NICU.  This
experience is what actually inspired her current occupation.
Talk about having a caring, giving healthcare provider with a huge
dose of empathy to boot.  Looking forward to seeing her again today
but we plan for her to be 'bored' during work hours.
Thanks for all the support.  It helps our family and especially our
little girl so much!

Letter from August 20, 3:48am/PST

Out of the blue on Friday Zaria showed signs of  Necrotizing
Enterocolitis (NEC) when the nurse found bleeding in her diaper.  Her
condition went from very good to quite bad rapidly through the late
afternoon.  She became a bit more stable with her vitals last night.
I just received a call from the doctor that the latest xray does show
a perforation of the gut.  She will have surgery within the next few
hours.
I am trying to be as positive as possible but it is very hard for some
reason.
Please send the love
hope 




7:00am


surgery at 4:30 am west coast 

Letter from August 17, 11:13pm/PST

Wanted to share these pictures with you all.  The one with my hand was
to give you a scale of Zaria's size (1 lb 14 oz as of early morning on
8/17).
These were taken before she got a bunch of needle pokes and added iv
lines.  These procedures weren't because there was a new problem but
the lines wear out over time and have to be redone.  When I went to
see her this evening she was so mad.  I have never seen her cry so
much.
But all in all we sure have a little fighter on our hands.  She is
fiesty and alert.  She tends to kick off her pillows, scoot around in
her bed and throw pacifiers.  Right now she has determined she will
work hard on surviving the NICU.  All her levels have been pretty good
and as of Monday her head scan showed no more bleeding of the brain
and no inflammation.  In fact the blood that had been there is being
reabsorbed by the body.
She is back on the jet ventilator and it could still be awhile before
she transitions to a traditional ventilator and into our arms (called
Kangaroo Care).  Her lungs look like micropreemie lungs which just
don't look good.  These things can heal but we are unsure what it will
take to get her weaned off the different stages of vents.
Family and friends are still doing all the right things for us and we
so appreciate it; we feel the love and support, enjoy the cards and
packages, and savor the occassional phone call that we squeze in to
the day.  Currently a team of folks are packing up our home on Leonard
Street to alleviate bills and rent for us.  Our chicken flock has
successfully been moved to foster care and Luke still plans to return
for work sometime soon and stay for a couple weeks.
Out in Reno our family is still dealing well with us taking over their
daily lives and schedules.  They are such a bright spot and we are
thankful.
Personally I am having a difficult time.  I spend my mornings trying
to understand what happened and yes, unfortunately going through the
'what-ifs'.  I spend my evenings thinking about my little girl having
to lay in a bed alone and dealing with whatever pain and discomfort
all of this is serving her.  My daytimes are the best as I spend a
couple hours by her bedside just watching, sometimes touching and
helping and other times trying to let her know how much I love her and
support her energetically.

Letter from August 7, 10:10pm/PST

Well I think I have been resisting creating a new post.  Not that I
don't get release from writing to you all but I am scared.  I am
scared of the raw emotions that are rising within me.  I really don't
want to face them or deal with them.
Since Zaria has been born I have been so busy with a minute to minute
survival of my daughter.  The past few days she has given us a break
from the 'earth shattering' changes and I have so enjoyed my time just
sitting with her.  But my time away from her is filled with much
unease, restlessness and some depression. 
I had not spent any time 'researching' preemies, problems, the NICU,
and so forth other than asking lots of questions of nurses and
sometimes doctors.  Now that I have a bit more time I am wanting to
read up on these terms that I hear over and over like "chronic lung
disease", "steroids", and such.  Yikes.  Just spending a half hour on
the internet makes me question doctors, methods and realize that this
journey is really (just like i have been told over and over) going to
be very long and very hard.  It is one thing just living it but when
you read about others' experiences and the things that happen (or can
happen) along a preemies health timeline then it is just plain
overwhelming.
Anyway back to the newest love of my life Zaria.  She is so sweet.
She is beginning to open both eyes and keep them open for longer
intervals.  I can see her dark hair and how she is becoming more used
to her body.  Lately she has started to enjoy us enveloping her in a
'hand womb'.  We hold her feet and bottom and cup her head with the
other hand.  I love the way she pushes my hand with her legs and grabs
my fingers with her toes or fingers.  Luke is noticing that she is
responding to his voice as well.  It is also getting easier to quickly
tune in with her energetically.  I think she likes me to cup her with
my mind and burn sage in the space surrounding her body.
The kids both remember her as we give thanks for our evening meal.
They speak of her more often and love seeing pictures of her.  Being
away from home is not easy for D & D but thankfully they are resilient
kids and have such supportive, fun and loving family hanging around
them.
hugs
hope

Letter from August 3, 10:43pm/PST

Well I really didn't realize how many different emotions could come

flooding through me in such a short period of time.
This morning when I arrived to visit with Zaria I found her doing
fairly well.  Soon Dr Yup (go ahead, it is fun to say his name)
descended upon me requesting a meeting with Luke and I as soon as
possible to discuss the open ductus.
Before Luke arrived I had the opportunity to change her diaper (teeny
little thing but full of poop! breast milk is getting through her
gut), swab out her mouth with colostrum, and feed her again.  --so
cool
Luke showed up a couple hours later and the doctor in his
straightforward and intense manner explained to us that surgery was
really the only option and it should happen asap.  Also the surgeon
was leaving town until next week so if we could make a decision and
perhaps have it happen today.
You are welcome to look up this fairly common surgery yourselves as I
would probably butcher and really don't have the energy to explain all
the details.  The important aspect is that Zaria's PDA was very wide
open, probably would not close on its on, didn't want to risk another
round of meds b/c of the possibility of more bleeding on the brain and
he really thought we should be getting more nutrition in her (but we
couldn't b/c of the ductus).  He of course got off track and bowled us
over with other likely hardships to come but eventually demanded an
answer.  Of course we agreed, headed home for about an hour break
before coming back to await surgery.
It was all so intense but she made it through with flying colors.  She
has a titanium clamp to stop up the ductus and her levels have been
superb since the surgery.  Everyone was smiling and excited in NICU
after the success and we hear that much of what she has been
experiencing will level out and she will be able to stop fluctuating
in her 'numbers'.
I am exhausted but thrilled with today's success but know that there
will be plenty of other hard days to come.  I do think we have a
little miracle child and am so appreciative to all the awesome support
and love that us and Zaria have received.  take care and more saga to
come....

Letter from August 3, 3:53pm/PST

August 3, 5:53pm

just received word that zaria is most likely going to have heart
surgery to close off the ductus tonight around 5:30 west coast time (3
hours behind most of ya'll).
will let you know more later
h 

Letter from August 3, 1:37am/PST

Today Zaria was so sweet when we arrived before lunch (and i mean
lunch for her!)  She was curled around this little bean bag pillow
that the nurses use to comfort the preemies and wedge things and so
forth.  She had her little feet tucked up and crossed and her earmuff
had slid off so we could enjoy seeing more of her entire profile.  The
blanket that covered the Giraffe made the scene complete of this cozy
little womb for her.
She had another good day in NICU.  All was fairly quiet and 'boring'.
I can hope for as many 'boring' NICU days as possible with Zaria; days
where I am not sitting up super straight and realizing I don't
remember when I breathed last.
Zaria had her first feeding of breast milk today and I gave it to her!
 She received her 1 millileter in a syringe which I held up to allow
gravity to slowly feed her through a thin tube through the mouth.  She
will receive this four times a day if all goes well.  Luke gave her
another feeding during his late evening hospital visit.
She also winked at him tonight!  One eyelid popped open and he saw her
little eye and then she did it again.  This is supposedly a slow
process.
We had our follow up appt with the OB who did my surgery.  It was hard
and tiring and I don't know what else.  Not really ready to discuss it
all as this email has been on such a positive note anyway.
Thanks again for the support from you all.  I think I missed home and
routinue and friends more than ever today.
I miss feeding my chickens and chatting with them,
BUT
I wouldn't miss my daughter's recovery for the world!

Letter from August 1, 5:15pm/PST

Today seemed strangely normal for us.  Breakfast with the kids, calls

and emails trying to take care of things back home, pumping every
couple of hours and feeding myself to keep up with this.  The family
dropped me off at the hospital for my mama visit with Zaria and they
went and had a great time exploring the Oxbow Nature Study Park.
Meanwhile Zaria was doing really well in NICU today.  So I took some
notes and thought i would share some of the particulars of her care
with you all.
Today she weighed 705 grams(1.55 pounds) meaning she has gained 10
grams during her stay but has dropped some weight which were fluids
that were building up in her the last couple days (probably due to the
heart valve med: indomethicin).  She is 30 cm long today.
Her blood oxygen levels were the best we have seen in days and her
heart rate was around 156.
Last night they gave her a shot of hydrocortisone to address low
cortisol levels.  Her blood pressure had gotten quite low yesterday
probably due to a few rounds of sedative/pain meds and a day of being
messed with.  The cortisol level in your body deals with stress
response and the hydro. was administered to kick start the body's
responses.  This did bring the blood pressure up and today's reading
on her internal monitor was around 40/24 which is very good and
stable.
For pain and agitation they go between two meds: morphine and
nembutal.  She doesn't respond well to these meds, maybe because she
is so young.  She hadn't had any meds since very early morning and was
resting fairly peacefully during late morning/afternoon.
Every so many hours she gets a dose of caffeine.  This will help start
priming her lungs to one day be off the jet respirator.  Once she is
off this type of respirator I may then get a chance to hold her (and
then i'll never want to leave!)
Today we found her with her light therapy off for the first time.  The
bilirubin levels were low enough that she didn't need this but they
will be monitored at least a couple times a day.  She didn't have to
wear here sunglasses so i could watch her eyes move behind the eyelids
(these are still fused) and look at her sweet dark hair.
Currently the nurses check the 'blood gases' every 12 hours.  Hers
haven't changed much today which is (my approximation) a good thing.
Currently every 12 hours Zaria gets a lung xray.  This is very low
level radiation.  What has shown up for her is usual for a micro-
preemie; nothing great but no serious problems or changes either.
Her head is measured daily to check for hydrosephalus (or indications
of the brain bleeding).  All well so far.
She has had some bleeding but no change/worsening on the most recent
brain scan.  This bleeding is most likely to occur some for a
micropreemie during the first couple weeks of life.  If it stabilizes
then you tend to only see it due to a major problem in the body (for
example: serious infection, need for CPR or other major health
change).
Maybe during the next few days she will begin to receive a tiny bit of
breast milk (1 ml; example that 1 tsp of milk is 5 ml so she would get
1/5 a tsp).  They had some ready today but when the juices from her
gut were extracted they were a bit green(bile) showing that her gut is
not ready.  They have to be extremely careful with the gut as this is
the last place the body sends blood to and things can go wrong here
fast calling for emergency surgery or other measures.  The breast milk
will not give any nutrition (maybe some energetic loving) but will
prime the gut to get it started working.
So that is kinda what her day today looked like.  Pretty calm compared
to others.  In fact i sat with her and begin to write her birth
story today.

(papa is over visiting now, will send another update soon)

Letter from July 30, 8:16pm/PST

Little Zaria is hanging tough.  We saw a heart echo yesterday and the
drugs have not help close the PDA(ductus arteriosis).  Since most
other things are currently stable we may be able to wait a couple days
to decide on the next course of action.  Pretty much there are three
choices and they all come with various 'could be' harmful side
effects.  One is to try another round of the drugs (i think it is
Indomethacin).  Another is to wait and see if it closes on its own.
Finally is surgery which obviously Luke and I want to avoid if
possible, although it is fairly common with these little ones.  This
week's doctor was hinting that she didn't really know the best idea
and that Luke and I would need to have some part in the decision.  We
are hoping for a different doc to come on tomorrow, especially if it
is our fav and a pediatric cardiologist.

Her brain scan came back unchanged which is good in my eyes, meaning
the bleeding has not spread any more.

The picture below is of her new 'cadaillac' Giraffe bed that provides
a more 'womb like' environment and keeps her more comfortable.

This picture is of the little table we set up at Abigail's life celebration.
The orchid represented her twin sister
Zaria and was sent to us from Old South Community Garden.  The picture
is of the twinflower which is where we got her middle name Linnaea.
The nurse made the plaque with an imprint of her feet and hands.

I think the ceremony was really good for the kids.  For Demetrius it
gives him a concrete point of reference.  For Delta she was able to
grieve and pray and understand more.  She said she really misses her

sister and kept the space around the set up calm and protected from

the rest of the attendees.  We were surrounded by family which lent it

self to a strong support for all of us.  Our family farmer friend sent an email
with the poem from King Solomon "A time to kill, a time to heal......"
This was a comfort for me as it helped organize my feelings and thoughts.
We read it at the ceremony.

The kids are doing OK.  Coughs are still hanging on a bit and they are
missing their home and friends and pets.  They do talk more about
Zaria:  loving and protecting her and Demetrius is excited to see her
in 14 weeks(his words).  Thankfully we have such supportive and
helpful family and they love hanging out with their cousins which are
each one year younger then Delta and Demetrius.
Luke goes every night to sit with Zaria and we try to go together for
a few hours during the day.  I will take the early morning shift as
soon as I can drive.  My c-section wound is certainly still bothering
me and I really try not to think about it as it makes me cringe.
Luke and I will go to my OB appt on Tuesday afternoon to get checked
out, ask questions about the surgery and the pathology of Abigail's
placenta.  Erin suggested I take some Rescue Remedy before the appt.
as I am unsure how I will be able to be civil to the OB.  I have
so much anger and frustration around my treatment during labor and
delivery.
Pumping is going well but is certainly demanding.  Every two hours I
try to clock in although today was a treat as I was able to sit by
Zaria's bedside to pump (I usually go to a little room down the hall).

Letter from July 27, 7:22am/PST

sorry for absence of correspondence; i am so swamped and pulled from many
directions and really if my body would allow it I just want to walk up in
the desert and take some time for the self!
times are hard with the babe as we got over the initial honeymoon period a
couple days ago---now there are problems and fixes and meds
and sedations and all types of heart stopping shit
best thing that has helped is working with my energetic healing friend--she
give me great tips on how to support Zaria and the rest of our family--very
empowering but not easy
will try to get out more info soon--
Luke and kids have bad colds, yeah, just one more thing.  So i am doing the
hospital thing myself.  Wish i could spend so much more time with Zaria (for
those facebook-less folks we put her name out to the masses yesterday:
Zaria Seren Hope McMullan.
Will have to share more on the name later.  My hubby has the gift that is
for sure.
We are having a little home ceremony with Luke's family, my mom/aunt on
Thursday evening for Abigail.  Not sure what this will look like but I know
I will hold the space for her (as I have been) to allow her spirit friends
to nuture her and allow her to be free of any earthly things that might hold
her back.

Letter from July 23, 1:29am/PST

Date: Sat, Jul 23, 2011 at 4:29 AM
Subject: Re: update on mcmullan twins in Reno 


hi friends,
thanks so much for all the thoughts, prayers, emails, calls and so forth.
 They all really mean a lot and make me cry and smile.  Sorry to those I
missed today.  It seems like once things get rolling around here they don't
stop.
First baby girl:  she is doing great right now.  We get to see her as often
as possible and the staff is really amazing.  Watching them maneuver such
tiny tubes and fingers and diapers is just astounding.  She found her thumb
today and enjoys pacifying herself by sucking it.  She likes to make trouble
by pulling at her mouth tubes (probably b/c they are in the way of her
thumb) but someone is right there to be on top of all these little things
that are helping her in survival and growth.  They take xrays every few
hours, mostly of the lungs and last night she had a brain scan (looking for
hemoraging) with no problems.  We exchanged scents today as we gave her a
little something that smelled of us and we took one of her blankets to hold
and smell.
The NICU is a hopping place but we hope to be spending a lot of time there
for the next 16 weeks.
It is really hard to process the passing of our twin girl Abigail.  It
throws us off sometimes when visitors arrive with condolences because we are
spending so much time on thinking about the baby girl in NICU, healing my
body, giving energy to our other two children, and enjoying the support of a
large community of friends and family.  In some ways I am not ready to
process it either as it is such a huge thing that happened to us.  It still
throws me off that I am no longer pregnant.  I think the hospital is kind of
like a bubble and probably many of the emotions will be more real and raw
when we leave on Sunday.
Delta and Demetrius are in good hands.  It is extremely hard for them though
and we hope to spend some individual time with them tomorrow (there is a
great healing garden around the hospital and a park across the street).
 Children are never allowed in NICU so we hope to make the experience that
their sister is having (visitors, staff, daily hoopla) more real to them.
 Of course they miss having mama and papa at home but thankfully we will be
spending nights together soon.
Luke of course is my trooper.  His family is being so great in helping feed
and nurture him in the hospital.  We have this pretty and roomy suite with
huge windows overlooking the city and the mountains including Mt. Rose.  The
sunrises are very nurturing as well.  Luke visits his little girl several
times a day and night and the helpful nurses are keeping him informed and
included.  The nurse that was with baby girl the last few days has been
working in NICU since 1979; she is a great teacher!
Well I should take advantage of the quiet time and get some sleep.  I am
finally off antibiotics in the morning so I won't have to lug my IV pole
around everywhere.  I am moving around fairly well albeit slow.  Still
pumping and waiting (although not very patiently) for milk to come in a bit
heavier so I can send some down to NICU in anticipation for baby girl to be
able to use it.  The staff is very sweet and helpful and one of the members
presented us with a beautiful memory box and hand/feet mold of our little
Abigail.  I am not ready to open it but the personal touches were so
heartfelt.
I am feeling a lot of anger and frustration around the actual birth process
(yesterday it was more like guilt and sadness) but folks are listening to me
vent which is really helpful.  Who knows what tomorrow will bring?
thanks again and I will talk to many of you soon.  Know that I am not
ignoring your greetings just that it seems like the days are just hoping
and then you are in bed when I finally can take a breather!  Love to each of
you.
Mama Hope

Start at the beginning of the story; Letter from July 22, 1am/PST

earliest photo of Zaria

Just wanted to let ya'll know what was happening and need some reiki,
positive vibes, prayers or what have you

last night/afternoon 7/20 I went into early labor
after leaking a decent amount of water, some bleeding and possibly a mucus
plug (plus other types of body changes) we went to the hospital in Reno
(where Luke was born) under the advice of our midwife.
we arrived around 1:30-2am July 21 with fairly consistent contractions.
 after a long few hours of contractions, back labor and other hospital hoops
we had an ultrasound.  One baby was no longer alive. I had a decent fever
and the thought is that there was a infection.  We attempted a vaginal birth
around 5am.  The first baby (the one deceased) came out quickly.  The second
who was and is still alive was not easy to get out.  We opted for a c
section and the baby was securely lifted out and rushed to NICU.

She was 1 pound 2 ounces and considered 23 weeks.  She has survived since her birth at 6:30 (pacific
time) am July 21.

We will just have to take this day by day.  The odds are not exactly in our
favor but we hope for the very best.
My mom will fly out with my aunt this weekend to be with us.  The kids are
taking it good and bad but we are so thankful for the huge amount of support
from our family here.

We plan to have the deceased baby cremated and have chosen to call her
Abigail Linnaea.
We are still in the thought process of our baby girl's name down
in NICU but hope to come to a decision quickly.
I am doing fairly well physically and will be in the hospital until Sunday
or Monday due to the need for all the antibiotics.
I am pumping to stimulate milk production in hopes that our baby will
survive and be given the milk in the coming weeks.
I will update ya'll when need be.

a letter to my twin daughter

Sweet little Zaria,

This letter could almost be a book as I want to fill it and savor every small moment of your life.
I loved being pregnant with you, so excited and looking forward to your arrival:  holding you in my arms, watching you grow up with your brother and sister.
And then there were two, cuddled up inside of my womb; indeed these were exciting times.

On July 21 I felt so robbed.  You did not want to come out yet, but they opened me up, carefully took you out and whisked you down the hall to your new home.  Really you looked so alien to me that first day or two, surrounded by all the equipment and numbers and your nurse and care team.  I was still in such shock and seeing you so little and alone in your bed didn't help ease that shock.
I now have to look back at pictures to remember what you looked like and how small you were during those days in July.
And then the background fell away.  Not that I didn't pay attention to your machines and monitors and hear the chattering of the nurses but You, I so loved You!  Each time I approached the outer security doors of NICU the rest of life would leave my thoughts and an excitement of seeing you would build.  As I stood meticulously scrubbing my hands and arms and nails I would crane my neck and strain my eyes to catch my first glimpse of you.
Then there was the check in with the nurse to see what was the latest on your little body's happenings.  Eventually, many times I could then relax into my chair at your bedside and stare at you in your isolette.  I called to you and let you know I was there and loving you again that day.  The hours would mount and it would be so hard to tear myself away from your bedside.  I couldn't ever leave (even to go down the hall to pump or eat) until I was satisfied that you were doing O.K.  The only good thing about leaving you was that I could go see your brother and sister and bide my time until I knew your Papa would be with you and sharing his magic.