Maya Journey: Maya's Birthday!!! (Part 1)

 

Well I'm writing about the day Maya was born five months after the fact so I will do my best to get the deets correct. ****I should also add that it has taken me a while to write about this because it was such an intense experience.  Also there is a little bit of TMI in there but you'll get over it:)

Towards the end of my pregnancy it was getting pretty uncomfortable to say the least. I had developed a condition called polyhydramnios, which meant I had a lot of extra amniotic fluid. The top of what is considered normal in the amniotic fluid index is 24, I would tell people I wasn't sure what the measurement was but that it must be in gallons. My number was 36 and toward the end it could have been in the 50s but I'm just guessing because I was literally having nightmares about exploding, that and I was scaring small children and was outgrowing maternity clothes and shoes! As I progressed I could feel Maya moving less and if I ever dropped anything on the floor it was gone forever. 

I remember my last ultrasound, there was a gargantuan belly and a teeny baby. It was a Friday afternoon and we were the last appointment.  Nate had to work so he met me there later. Dr.B and Allison sat and talked with me about how everything was going and gave us lots of compliments and talked about palliative care and how none of the other families that made the same choice as us ever regretted the decision. We also talked about how in my culture children born with disabilities are thought to have been especially valiant in the pre-mortal existence. Children with disabilities are so awesome they only need to gain a body and in Maya's case return home to Heavenly Father much sooner. We also talked about the sacred privilege and honor in parenting such a spirit. 

Later I learned of scary complications and scenarios that come with my condition.  If my water were to break on its own, for several reasons I was instructed to call an ambulance. I was pretty scared,  super super uncomfortable and even more excited to finally meet Maya. 

I remember telling Mindy that it would be so comforting if I could just be at the hospital like a hotel until Maya was born because I was so nervous. 

Perhaps that day or not long after that I was instructed to go to labor and delivery to be checked out.  Finally Nate finished up at work and we all loaded up in the van and headed to Danville.  That evening I was admitted because my blood pressure was too high...I was thrilled to stay at the hospital like a hotel just as I had wished,  this would be the first of many tender mercies. The boys were picked up by my dear friend Rebecca whom I literally had asked to be my on call labor day hero if things went unexpectedly,  and she certainly was and the boys had a blast. 

The plan was that I was to be induced at 39 weeks and my siblings Tom, Courtney, and Becky were going to come and be there to meet Maya and take care of the boys, it was going to be awesome,  but plans changed,  Maya would be born almost two weeks earlier.

I ordered a special gown to wear on the big day. I'm only 37 weeks here people!

The following morning it was decided I needed to be induced!  Finally we would get to meet Maya! I had packed decorations for the room to help welcome Maya and to make a joyful place for us to celebrate her with the boys.

      

Latex is not allowed at the hospital but everyone was bending over backwards to make things special and they just put an allergy sign up on the door. Mindy and Allison helped to decorate and actually when Mindy heard I was going to be induced she of course went on a 5am shopping trip to pick up all kinds of memory making crafts for foot prints and gifts for the boys. 

Excited for the big day we had been planning every detail of for months.

Nate and I did our normal thing where we crack jokes and reminisce about other times we cracked jokes. (It's what we do.)

Several hours went by and things were not progressing as quickly as hoped.  This was not uncommon for me but this time I was foregoing the epidural in hopes of speeding up Maya's seemingly treacherous journey. The doctor on call talked about how they wanted to break my water,  which typically is not a big deal but in this case it meant a tsunami, and more scary scenarios as a result. So naturally we were scared and not sure we wanted to do that so we called Dr.B, who is like our Dr. Dad, we really trusted him and wanted his guidance. After talking to him and praying we decided to just wait and see.  They took me off of the Petocin and I even got to eat and relax. After a couple hours the doctor checked me again and I had majorly progressed, everyone cheered because also Maya's head was down now and would prevent all those scary scenarios from being realized.  More tender mercies.  So we were getting ready to walk the halls again and I was excited for my water to break like a tidal wave and make a big scene but I didn't even make it to the door when it broke! It was a tsunami and it startled me so much I screamed. It was epic.  Back in bed and on Petocin I went. 

Shortly thereafter my sister Becky (on the spot dropped everything and bolted the 8+ hour drive from Detroit) and our very brave photographer arrived and I was so happy.  Tom and Courtney had planned to be there but were not able to get away as quickly.  

As I laid on the bed I felt like I was peeing and could not stop and I laughed and told Becky and then it seriously was not stopping and then we heard it pouring onto the floor!  I'm not exaggerating people,  then Becky started screaming in amazement and it still did not stop.  Our nurse and now my regular doctor (another tender mercy)  came in for the excitement. 

We were all laughing our heads off.  

So like angel nurses do they tried to clean me and the bed,  but it just would not stop!!! I was sure then that I had been right,  it WAS measured in gallons. 

Not long after that things stopped being funny and I told myself over and over I can do anything for one minute. Nate held my hand and another nurse and Mindy surrounded the bed and offered support.  At one point Maya's heart rate dropped very low (this was predicted and some docs recommend not having the heart monitor on because it can be stressful). We were aware that often Trisomy babies do not survive labor.  I began to break down and Nate held my hand tight and stroked my hair. At that point Mindy also whispered in my ear that I am strong,  that I can do this,  and that Maya needs me to be strong. I felt she was right. That room became a very sacred place. I remember closing my eyes and trying to communicate with Maya's spirit telling her to hold on. 

The pain became so strong and unrelenting when the contractions were right on top of each other. 

Minutes later along with lots of commotion  (let's just say the last five minutes or so I did not keep my cool:) Maya was born...alive!!!  She was a whopping 3 lbs 14oz!

Finally we met and could finally hold our sweet baby girl...did I say finally?... Finally. 

 Rebecca had been waiting with the boys and not long after that they could finally meet their baby sister (finally). Many tears were shed.

A few weeks earlier I had asked a friend of ours if he could be there for Maya's birth (shortly after) to help Nate give her a blessing but they had plans to be out of town for a few weeks during that time on vacation so he would not be able to be there. Well he just happened to be working at the hospital that day miraculously and was able to be there for the blessing. (More tender mercies).

I held Maya in my arms as her daddy and our friend brother Johnson laid their hands on her head and pronounced a blessing. 

One of the things promised to Maya was that her life would be significant. Certainly and without the right words to truly express, her life has been.

See that wasn't so bad.

More next time...

Maya Journey: The Turnaround

Maya Journey: The Turnaround

Does anyone else feel like they have been in a trustfall 24/7?!!

Shneikies has it ever been a rough week...at least that's what Maya just whispered to me. I'm not going to hold anyone in suspense, Maya is doing great, I'm holding her in my lap as I type this one-handed.

I have been able to hang on to this quote on this scrap of paper for over 10 years.  This certainly is referring to Maya, our Mighty Girl!

We have seen this girl battle hard this week.  Maya had a drastic decline starting last Monday.  Wednesday morning Nate's sister Diana who is also a nurse (a.k.a Aunt WonderWoman) dashed up from Virginia to rescue us and boy did we ever need her.  Our nurse on Tuesday morning asked if we could have family come help us and first of all I didn't really know what was ahead of us but we were all sick and I didn't want to put any of my local friends or faraway family at risk and I just told my nurse that we would be ok and that life is just hard sometimes and you have to just deal with it.  SO Tuesday evening Diana offers to help...cue Wednesday morning, me asking her to ditch her kids and save us. (probably within an hour she was in the car on her way up).

This was DD all weekend, at the bus stop, at soccer, grocery shopping at 5am, not to mention doing 1000 loads of laundry and hanging out with the boys at Chuck E Cheese. (I also want to recognize that everyone wished they could help too).

With all that Maya was going through on Friday I spoke with the cardiologist and asked her if I should be gathering my family from school and work (Maya started having seizures on top of a bunch of other stuff) and she told us she could possibly only have a couple days.  

Well Maya got worse quickly and I held her as she would stop breathing and the nurses would say, "come on Maya...come on baby girl" and then she would breathe again.  So Nate rushed home and Diana picked George up from school and we all just loved on her, and waited, and got sinus infections from crying, and loved on her some more.  Saturday morning I gathered pictures of some of our loved ones who had passed on before Maya and put them on our counter where we could all see them.  It was giving me strength to think about the reunion they would all be having with Maya and part of me was jealous.  We believe that the veil becomes very thin when someone is born and when someone dies.  A social worker came to our home and Diana explained why the pictures and the social worker exclaimed, "I totally believe that" and that she had experienced that many times (deceased family members being present for the passing of a loved one).  So it brought me strength to think of my Dad being close.  I also put on jewelry from some of those loved ones and joked about trying to summon my ancestors:)  Sometimes jokes are good.

So then, Saturday night, Maya totally snaps out of it.  I mean she was as close to death's door as I imagined she could get and then....she opens her eyes.

This is what she looked like on Sunday.

She seriously seemed to do an almost immediate 180.  As of yesterday's hospice visit her heart rate is back up, respirations are at her normal and she is eating very well.  She is not quite back up to where she was before her life got crazy but she is doing amazingly well.  I must say I am learning a lot and I am changed from this experience, still trying to really understand God's will and hope I am doing what He wants of me. The nurse did say that with her adult heart patients they often will have an "event" and deteriorate and then have another "event" and so on until God calls them home.  You can probably imagine the intense feelings that come with that prospect but I am learning to take things as they come.  Gosh we just love our Maya baby so much.

There is a talk by Elder Wirthlin called Sunday will Come, about the darkness of the Friday when the Savior was crucified and then how on the following Sunday, tears were dried with the knowledge of the resurrection of the Lord.

"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.

But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come."

Maya wearing the Sunday dress I thought I had bought to then only cry over.

Thank you all for your prayers, love, tears, casseroles, and innumerable acts of service for our crazy family.  Oh, and welcome to our roller coaster.

Much Love.

Maya Journey: The Good Fight

I am sitting at the computer staring at a keyboard and I am not seeing any words.

Maya's earthly journey is coming to a close.

Probably 20 times in the past 3 and a half months I have seen that look in the doctors' or nurses' eyes, that "it's happening" look.  It is a look that turns your stomach and makes you realize you had almost forgotten it could happen.  Well up until now that look was never right and I stopped paying attention to it, and I tried very hard to stay in the moment. I was reminded that all any of us really have is today and so lets make today pretty great.

So I went last weekend on a trip to see my great uncle Martin for his 97th birthday, which turned into his funeral.  We were teasing how the thought of all my siblings and I going to visit him was just too much:)  Since my uncle Martin was the last of his generation it kind of felt like we were losing all of them again and so it was pretty poignant.  I sat at the table with my siblings and I cried talking about what it will be like to see everyone again and to all be together.  Its one thing to think that is nice and another to really believe it and picture how amazing it will be to all be together again.  I even cried thinking about how Maya would join them sooner than I would like.

I returned home and Maya's decline began.  I cannot begin to express how intensely we are all feeling every emotion.

We just love her so much and it has been an honor and a sacred privilege to have her in our family and with us even for this short time.  Soon she will be free from her little body and return home having fought the good fight.  Certainly she can do so saying:

"I have fought a good fight

I have finished my course

I have kept the faith"

More later. Love to you all.

Maya Journey: Celebrations!

Celebrations!

3 Week Birthday

After we found out that Maya had Trisomy 18, even while I was pregnant we made a lot of opportunities to celebrate her.  Celebrating is sort of our thing.  There are always scraps of streamers stuck up in the corners of the walls at our house left over from some happy evening. So on Maya's 3 week birthday we thought she probably needed some cake and certainly we needed some pink and to see her in this ridiculously cute outfit.  Aunt Rara made Maya the beautiful hair bow and Maya is wearing a bib decorated as a cute dress (the closest I could find to a girly girl dress for such an occasion).

Naturally it was a princess party and the boys are dressed as knights or in Henry's case a transformer knight combo.

I made Maya a chocolate cake, her favorite, second only to lemonade and caramels (what I craved for a solid 9 months).

Aaaand the princesses.  I tell everyone I wear tiaras regularly to remind those guys I live with the reality of the situation.

           

It was a fun party. Ollie made the birthday wish for Maya to stand up, walk over to him and he would give her a big hug and a blanket. Maya gave gifts to her big brothers of jammies and S'mores stuffs.  As is typical of the Smith princesses, as soon as the party was over we immediately changed into comfy jammies of our own.  Being a princess is hard.

2 Month Birthday!!!

We really thought that having mere hours with Maya was us being hopeful and here we are celebrating Maya's 2 month birthday!!!  Our wonderful medical team from the hospital is in contact with us regularly just to see how we are all doing, especially Maya.  It is hard to express our gratitude for these amazing people, they have all done so much to support and love our crazy family through what started out as a very hard time.  They even put together this fantastic Little Mermaid birthday party for Maya!  We were so excited to see them all again and talk to everyone that I was distracted and didn't take nearly enough photos!

You can tell how much they love Maya. Many tears of gratitude were shed.

Those in attendance (not everyone made it into the pictures unfortunately) included our Maternal Fetal Medicine team, labor and delivery nurses, NICU doctors, pediatricians, and Cardiologist.  All of whom have become family and an elite group of people who know and will never forget our sweet Maya. 

 The party was catered with Mac n cheese, meatballs, chicken fingers, salad and this cake!

(pictured with Mindy who was the mastermind of this whole thing!)

We had so much fun! They even had a pinata for the boys and had printed out lots of pictures of our family for the boys to make their own scrap books. 

Maya wore a special outfit made by our lovely case worker Mindy, consisting of a tutu, cute onesie and matching head band.  The boys wore special t-shirts with Maya's footprints from the day she was born (put together by Mindy, Alison and our crafty nurses).

This is how we tried to thank them but it is hard to express how grateful we really are.

Let's not forget Party favors!!

We wanted to share with everyone this beautiful print

and an MG bracelet from Maya Grace, our Mighty Girl!!!

Since we are talking about our amazing medical team you should also know that Mindy went on vacation with her family to the Jersey shore and thought of us.  She bagged up sand, seas shells, bottled ocean water and recorded the waves of the ocean and over-nighted it to us so we could have a day at the beach with Maya!

 Naturally treats were included for those rascal boys!

If your jaw is not dropping about how amazing our medical team is...I have not said enough because they truly have been angels for our family these last several months and have been examples of the Savior, helped us feel the love from our Heavenly Father and have inspired me to do more good (to say the least).

To many more celebrations like these!

Until next time...

Maya Journey: Maya and Mama

MAYA and MAMA

So.... I really love Maya.

It's pretty much the best thing ever to be her Mama.

Like a lot of people I have a cell phone, but I also have the ability to render my cell phone useless on a regular basis.  I take a million pictures with it, mostly of my rascal kids.  I uploaded my pictures just before it melted down and thought I would share a few of my favorites.

Maya loooooves it when I rub her head.  The photo strip below shows Maya totally awake and alert, then I start rubbing her head and she immediately falls asleep and goes into magical fantasy dream land where her eyes roll all around and she smiles super big.  Pretty much my favorite thing ever.

It is just so fun having Maya for my daughter.  I love dressing her and making her little hair bows and snuggling her into soft pink blankets. 

  

 It's funny because I feel like I have someone to commiserate with and spend time with just us girls.  Her personality is really starting to show.

Maya is now 4 lbs 5.5 oz and is starting to grow out of her doll clothes.  Yeah you heard right, this feisty baby of mine wears American Girl size doll dresses.  On Sundays I like to wear my "Sunday best" to church and even at home if I cannot attend. I like to do this because it makes the Sabbath feel special and different from other days.  I thought it would be special if Maya could wear a dress on Sundays too.  I have always loved seeing super cute dresses on baby girls with all the fluffy tutus and ribbons and I just couldn't find ANY preemie dresses.  So one Saturday I saw an ad for a garage sale near me that listed doll clothes as one of the items for sale.  I thought I would check it out.  Well it turned out to be a tender mercy for me.  It may seem silly but it really meant a lot to me to be able to put my baby girl in a dress.  When I explained to the lady that they were for my daughter I pretty much turned that garage sale on it's ear. I should have known that would happen but I was asking her if she had any cardigans or leggings to go with the dresses and it started to sound like I was REALLY into dolls. Hahaha!  I had people getting all choked up and wanting to pray with me- it was kind of intense :) So I rushed home and made matching leggings and hair bows, it was pretty much the best thing ever.  Later that same lady who made the doll dresses, contacted me and wanted to come meet Maya and brought her another dress.  There are a lot of good people in this crazy world of ours.  And wouldn't ya know it Maya is growing into newborn clothes!!!!  She is pretty much ginormous now!

Aaaand since I do not typically have a professional photographer following me around I take a decent amount of selfies.  Often I am holding Maya next to me and I think how I never want to forget that feeling.

She loves to be held and snuggled.  I often hold her up against my chest and she will try and move her head so that she can just look up at me.  I just love her so much.  

(Feeding Maya with a syringe nestled in my shirt)

 

(Looking right at her Daddy...and yes those are purple polka-dot pants and a floral shirt...and no I couldn't find a matching outfit for me.)

Maya in her favorite sleeping spot.

Maya has had several doctors appointments and some rough days here and there.  Certainly it has been an emotional roller coaster but for now I just wanted to share how much I love being this mighty girl's mama.

"I am the daughter of a king 

who is not moved by the world

for my God is with me

and goes before me

I do not fear

because I am His"

More next time.