Maya Journey: Hope is Never Lost (part 2)

Recently on Maya Journey.... :)

***This is the other side of the medical story, the side filled with hope, strength, kindness, charity, and love, supplied by our amazing medical family at Maternal Fetal Medicine and many others at Geisinger in Danville and Forty Fort.*****

I talked about our introduction to carrying a baby with Trisomy 18, a chromosomal disorder lovingly categorized as incompatible with life.  (yer MOM's incompatible with life!...sorry, reflex).
That was a very hard time in our lives.  A few weeks after that first appointment with my regular OB (the one with no hope), we met with the MFM specialists in Danville at that fancy hospital I mentioned.  We went for several appointments including an ultrasound, echocardiogram, and discussion with a genetic counselor.  This would turn into an all-day event, that I was not super looking forward to enduring.

It has now been a few months since that day, and there were many other subsequent epic doctor days since that one, but that is when things turned around, and I will explain how.  Before I became a stay at home mom I worked in a few different residential treatment centers as an in-training therapist (the psycho kind;).  Each patient/client had their very own treatment team, a group of multi-disciplinary individuals that would meet both individually with the client but also as a team to discuss treatment plans that fit the goals and needs of the client.  Since working in that environment I often thought that medical treatment should be the same way.  Well, shockingly that is the kind of medical care we were stepping into when we started seeing our new doctors in Danville, and not only that, they really saw us as people, like the human kind, not the piece of flesh on a conveyor belt that needs medicine and then it will go away kind.

I remember vividly the look on Dr. Bringman's face when I shared my experience about my OB.  He gently explained that my OB and many doctors say things and are not speaking from experience, and he told us he wanted to apologize on behalf of that doctor, who really just didn't know what she was talking about.  There were several faces in that ultrasound room as we watched our baby girl on the screen and Dr. Bringman explained that we were already her parents, we were already loving and taking care of her and that she was ours.  We felt so much love coming from everyone in that room.

Janelle was our ultrasound technician when we found out we were having a girl and for just about every appointment after that.  She came into the room and gave us big hugs and told us that she had been thinking about us since that first ultrasound and had gone home and started researching because she just wanted to help us in some way.  I had actually thought a lot about her as well because she witnessed our tears of joy and excitement when she told us we were having a girl (finally!!!) all the while she was seeing that our baby girl had some major issues and then witnessed the tears as we cried when the doctor explained that our baby girl had serious health problems.

Mindy and Allison (the social work hospital gurus) also were very concerned with how we were handling the news and both that day and for several months following, would bend over backwards to love and support our whole family through this journey.  I can't even begin to share all that they did and continue to do for us, we just love them so much.  Even on that very first day Mindy was paging doctors and taking us to each appointment and taking notes for us and asking questions for us that we wouldn't know to ask, and explaining things to us.  She even showed up to one appointment with lunch for us! And theeeeeen I guess after we left our appointment with Dr. Bringman he had shared with her how he wished they could take care of my regular OB appointments there as well, so guess what...Mindy made it happen! (That should really be her name- Mindy MadeitHappen). Mindy was able to line up an appointment with Dr. Fisher so that I wouldn't have to go back to no hope land!

My views at our echocardiogram (fancy ultrasound just of Maya's heart)

So many times Nate and I have shared with our friends and family what a difference our medical professionals made for us in this journey and that it would have been a very dark path without them (and I haven't even mentioned all of our angel nurses).  At my last echocardiogram with our cardiologist Dr. Golten, I told her that I was actually going to miss our appointments and seeing her, she agreed and gave me a big hug and a kiss on the cheek and told me to stay positive and that everything will be ok.

One of the places Nate and I go in times of trouble especially, is the temple.  The temple is a dedicated holy place where we can receive comfort, inspiration and peace.

(This is the temple where Nate and I were married)

We go in the temple feeling burdened and we leave the temple feeling strengthened and like "hey life isn't so bad, we can do this."  I'm saying this because we felt similarly when we went to these long appointment days.  We would show up feeling burdened and scared, and we would leave often after 5-6 hours of pretty much all rough news appointments feeling somehow lifted and strengthened.  We really felt so much love from all of our doctors, technicians, case workers, you name it.  I suppose there were heavenly, unseen angels (and still are) helping us along, but they certainly felt to be out-numbered by the ones in those offices.

"I have spoken here of heavenly help, of angels dispatched to bless us in time of need. But when we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods. Some of them gave birth to us, and in my case, one of them consented to marry me. Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind." (Jeffery R. Holland, "The Ministry of Angels").

Truly all of our medical support team was angelic for us and will forever be in our hearts.

More next time...

Maya Journey: Hope is Never Lost

Maya Journey:  Hope is Never Lost

Spoiler alert: lots of misspelled medical terms and grammatical errors a head :)

***I wrote this entry a couple months ago and never published because I had planned to include both the dark days of this pregnancy and how things turned around once we switched doctors but I ended up just writing about the hard part first, so more to come about how we were later surrounded by the best medical professionals in the universe and the many miracles that followed.****

We went to our 20+ week ultrasound where we learned Maya had some red flags for chromosomal issues including a heart defect.  The genetic counselor explained the possibilities and some of the genetic testing available including the associated risks.  Never even considering in past pregnancies the offers to do prenatal testing, this didn't feel too different because we knew that we would not terminate a pregnancy.  At length we explained this to the counselor and the doctor explained that he understood but to keep in mind that with the red flags present we may want to prepare ourselves. That reason made more sense and we did move forward with an Amnio.

We learned of Maya's diagnosis the Tuesday before Easter.  The same genetic counselor we spoke with prior to the testing, gave us the news, and then asked if we were still going to continue the pregnancy.  When she asked us that question even after our lengthy discussion about our feelings against terminating a pregnancy...it felt kind of like an "are ya suuuure?" and that are baby wasn't worth it in the eyes of medical land.  (I like to live in magical fantasy land, and so medical land really didn't seem that fun at this point).

(magical fantasy land)

vs.

(medical land)

Thankfully we were invited to go on a vacation with the Woodruffs and we had an absolute blast.  We were nestled in a cabin in the mountains with a big pile of nature, cuzzies, and Easter candy...exactly what we needed.

We went to church that Easter and heard a talk about how not all miracles look the same.  (Brilliant, and inspired obviously).  The speaker said (in essence), sometimes all you have to do is take a step into the water (Moses parting the Red Sea) and God will blaze a path, but sometimes God sends a fish to swallow you whole (Jonah).  Most of the examples were of those asked to accomplish something of God and lead down a very difficult path to do so.

Certainly, that Easter Sunday we felt the hope of the resurrection more intensely and connected deeply with our gratitude for the savior...and also perhaps the realization that a giant fish had eaten us.

Shortly after we returned from our Easter vacation it was time for another doctor visit, the first one Maya and I would attend wearing our new label "Trisomy 18" (echo echo echo).  Naturally this was a terrible introduction to our new world.  The doctor actually said "There is NO HOPE" and asked why I would still deliver at the fancy hospital with the NICU when they would not be doing anything for me anymore.  The doctor (and this was one I had liked and respected) went on to tell me how she could prescribe me depression meds because losing a baby will be hard and normally they don't do that because it could cause birth defects but I "don't have to worry about that now." She continued to describe changes in the birthing process and that the focus would no longer be on the baby but on the care of the mother.  I felt terrible walking out of that appointment.  I had nothing to compare to, we had never been through this before, it felt like my baby didn't exist anymore, and that I was transported to a hospital in the 1900s (pictured above).  This is where some of those dark days began.

There is a talk by Jeffery R. Holland called Like A Broken Vessel that is especially poignant for us right now, it's actually meant to be mainly about Depression, and of course there have been some pretty dark days where I have felt like depression was a tar pit and I was stuck in it, only to be rescued by a wooden sign that read "Your baby is going to die" and on the other side "But hey that's ok she will be an angel so you should be happy" beating me on the head pushing me deeper into the tar.  Pleasant right? I Know.  Although I have had a good number of days like that, and may have similar ones in my future, it is hard work but I feel like I am on more solid ground.

"God's love is there for you whether or not you deserve it.  It is simply always there.  Never, ever, doubt that, and never harden your heart. Faithfully pursue the time-tested devotional practices that bring the Spirit of the Lord into your life.  Seek the counsel of those who hold the keys for your spiritual well-being.  Ask for and cherish priesthood blessings, take the sacrament every week, and hold fast to the perfecting promises of the Atonement of Jesus Christ.  Believe in miracles.  I have seen so many. They came when every indication would say that hope was lost.  Hope is never lost.  If those miracles do not come soon or fully or seemingly at all, remember the Savior's own anguished example: If the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." (Jeffery R. Holland)

Until next time...

Maya Journey: Life with Maya

Boy do I have a lot to catch up on!  I need to write about Maya's birthday and pretty much every moment since, but right now I am going to talk a little bit about bringing Maya home.
Maya's "nursery" went through many phases throughout my pregnancy.  For me, ESPECIALLY in the first trimester, I mainly feel deathly ill, and not the cute kind.  So I try and do things to remind me that it is a baby that's making me feel awful, not just a parasite:)  The first phase was carrying up the changing table from the basement and hanging the cute canopy over it that we have used for all of our babies, as a reminder to myself that another small person to love and adore will come out of this, and of course by this I mean my glorious dry heaving emotionally unstable body.  So then we got the news that our baby had a very low chance of survival.  The second phase was putting the changing table back in the basement.  Then in the process of dealing with every stage of grief back and forwards eighty times at some point I dragged the crib down the stairs and set it up in our bedroom with a few baby girl items I courageously purchased (one outfit) and the teddy bear the doctor gave us with Maya's heart beat in it, and the blanket I learned how to crochet.  Then phase fifteen I made Nate drag the crib back up into the spare bedroom.  Phase 97 I actually set up the room like a real, no kidding nursery for Maya.  It made me feel both hopeful and despair.  This is where we will put our sweet baby girl!  This is going to need to be packed up "when this is all over."

 

So you kind of get the back and forth we went through a million times about what may or may not happen.  Really, all of our doctors appointments and medical committee meetings were all centered around how we wanted things to go at delivery.  By this I mean, how far do we want to go with resuscitation, do we want this or that done right away, do we want Maya given to me immediately, do we want them to work on her while I am holding her, do we want to have her blessing immediately, should we have NICU docs or pediatricians present...the list goes on, and really it all was built around delivery.
Once Maya was born, and ALIVE (!!!!!), well I guess we hadn't figured out much after that! On our birth plan the overall goals were that we wanted Maya to be born alive (yes, that was a documented goal), to have the boys meet her, and bring her home as soon as possible.  I honestly did not think she would come home with us.  So after a typical length stay at the hospital we brought our family of six home with us!  Maya was too small (weighing in at 3lbs 15 oz) to even ride in a normal car seat so she gets to ride in everyone's dream...a car bed!  One more thing I did not know existed.

(I'm holding Maya in the car bed).

We drove home from the hospital to be met at our house with the hospice team and a delivery of medical equipment including oxygen tanks and this other thing I can only identify as the sucky thing (not just a clever name), and various meds, all of which made available for the ever looming JUST IN CASE (I want to make a joke here, but this is actually does come with a terrible looming feeling of soul crushing grief...especially when I let fear in).  

It has now been two whole weeks with Maya home!  When we first found out about her diagnosis Nate gave me a priesthood blessing, and in that blessing he said that Maya would surprise doctors, and that blessing has proven to be true over and over again.

Maya is a scrawny little squirt but as that popular NICU quote goes, she really IS fierce.  To give you an idea of how tiny her bum is check out Maya's diaper vs. our monstrous 2 yr old's diaper.

Her diaper is still a bit on the big side for her.

I want to write about every moment since she has been home, but I can probably sum it up by saying we are snuggling her constantly, the boys are always kissing her, and she is always wrapped in about 5 different pink blankets.

We did go to the Cardiologist who confirmed (as was suspected by multiple echocardiograms while Maya was in my tummy) that Maya is facing heart failure.  This could happen in days or weeks from now and will be her ticket back home to Heavenly Father.  

We didn't think we were going to have more than moments with Maya and really we have gotten everything on that epic birth plan I mentioned, and we have seen so many miracles and tender mercies, but as is typical of me...I just want more.  So lots of prayers are being uttered and many tears shed, but when we focus on the Lord, I can feel the Holy Ghost lifting my understanding and it feels slightly less soul crushing.  That is all I may say about that for now.

My favorite time of day is the morning.  Maya sleeps on my chest, we wake up and the sun is shining.  

I change her tiny diaper as she squeaks and squirms and I dress her in teeny tiny little pink onesies and stretchy pants, oh how I love to do this.  She also wears little booties and I snap her onesies over her little pants so she looks like she is ready to mousercise...so cute.  Maya acts like the rest of our babies did, squirmy, squeaky, cries when she is hungry, and shoves her fists in her mouth looking for something to eat.  When it's time to nurse I use a pump and then Maya latches onto a 6ml syringe.  Maya has gotten so used to her syringe's that when she is hungry she forms her mouth like she is sucking on an invisible straw...again ridiculously cute.

Maya does seem more alert than our other babies, Nate and I have contemplated this as a heavenly gift.  Maya opens her eyes and responds when we speak to her.  This time is such a treasure to us.  Maya opens her eyes and her Daddy leans in and says her name and she perks up and fixes her gaze on him.  This is especially amazing considering her condition and that doctors were not sure her brain would function enough to tell her lungs to breathe.  Her father speaks and she hears.  Gosh we just love her so much.  Her hands are tiny and formed in what I guess you could call permanently clenched...nothing is more beautiful than her tiny little hands.  

We feel her strong spirit and it is such a contrast with her tiny, vulnerable body.  Frequently I think about how Maya is not her body and how amazing it will be to see her with an even more perfect resurrected body. 

"I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord
Jesus Christ! With the apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I
bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a
miracle or happier for them that they are fully perfect and finally 'free at last.'" (Elder Jeffery R Holland)

I will leave you with that.  Thank you for all of the prayers and love, we really do feel it.
Until next time...

Maya Journey: Naming our Baby Girl

Naming Our Baby Girl!
At the ultrasound on March 8th when we were introduced to the possibility of chromosomal abnormalities the doctor asked us if the baby had a name.  Normally we come up with fifty different lists and once the baby is born we stare at him (or her) for a while and try and figure out what name is the most fitting.  In this case, once we knew for sure that our baby girl had Trisomy 18, the doctors explained that could mean very likely that she may not survive to term.
We came to realize that this pregnancy, baby swishing around in my tummy, may be the only time we get with her and we wanted to connect with her as soon as possible.  We chose the name Maya Grace for our baby girl.  Maya just sounded so happy and one of the definitions is goddess of spring which just seemed so perfect.  A friend of mine brought a gift of tulips (one of my favorite flowers) and mentioned how if we planted the bulbs they would come back the next year, and although I have understood that tulips don't last very long, they are very beautiful.  I decided that wherever we live we will plant Maya tulips to enjoy each spring. Grace is my great grandmother's name and I have felt a connection with her despite never actually meeting her in person.  We also felt connected with the name Grace because it is by the grace of God that we are made better people.  And gosh despite all of my faults and weaknesses being revealed all at once, it is my hope to be a better person and a stronger family because of Maya.

Our latest pictures of Maya baby:) Oh how I love to look at these!

The doctor also gave us the idea of celebrating Maya's milestones even before birth (like every week when I get those "your baby is the size of a..." email.  So we decided to have a cake in her honor for one of those such weeks.

(Note the "M" cake behind the insane boys).

More later...

Maya Journey: Telling the Boys

The News
The way I pictured our day going after finding out we were having a girl (FINALLY!) was much different than reality.  Really, I would have ditched everyone (the fifty boys I live with) and gone baby dress shopping.  Instead we were faced with the news that our baby may be still born or live at most one year.  It seemed more like she would only wear one dress.
However, we wanted to celebrate! (with heavy hearts).
We decided to continue with our plans to surprise the boys and skype/call family members with the exciting news.  So we bought three extra girly princessy balloons and wrapped them inside a large box that we had the boys open to reveal what flavor sibling they would be getting:)  I have a video but it is too large so picture the photo below and the boys screaming. If you have been to our house that should not be hard to do.

George: "It's a girl!"  (running around screaming)
Henry: "Balloons!" (no clue what is going on, but also running around screaming)
Oliver: "No!!!!!!  I wanted it to be a boy!!!!" (weeping and wailing)
Gill: "Ha!! Suckers!!" (If I had a football I would have spiked it.  I mean c'mon, it's four against one people.)

Finally we consoled Oliver and told him that there is a baby girl that just found out she is going to have Oliver for a big brother and she is so excited!  Ollie softened and decided he was happy to have a sister and adamant that her name should be Olivia.

So we rejoiced with family members and texted the good news to siblings and parents who also talked about how fun it will be for us to have a girl, listing off all the girly things that would soon fill the house.  Later that night and the following day we broke the harder news to our family and enlisted prayers, fasting, care bear stares etc.  Many tears were shed.

My sister Becky hopped in the car with her two girls and drove 10 hours to basically hang out with me and watch the boys during our hospital trip for the amnio and more ultrasounds.  It was so fun and comforting having her there to eat Chinese food and candy while we processed and waited to process news.

Soon after we had a family home evening with the boys and told them the news about their baby sister.  We knew for sure (compared to the what we knew about chromosomal defects), that she had a serious heart defect that would require intense intervention with grim statistics immediately after birth.  We explained to the boys the physical aspects of the baby's medical problems and explained what we know spiritually about our baby.  The younger boys did the usual once we really got talking (running laps and screaming) but George was able to listen and understand.  We talked about how heavenly father has a plan for each one of us including gaining a physical body and having experiences that allow us to learn and grow (this was not new to him but a child dying is a different situation).  Often a lifetime is measured in decades but in our baby girl's case Heavenly Father may need her to return back to Him much sooner.  We talked about how she was likely a sword wielding (bad a**) from the pre-mortal existence, that is so awesome all she has to do is gain a physical body and Heavenly Father has a special mission for her to be one of our angels.  If you are reading this, you know that I picture angels differently...my dad passed away in 2001 and I later photoshopped his face onto Obi Wan Kenobi, naturally that is how I picture my sword (light saber) wielding angel Dad.

This is also how I picture my sword wielding baby girl:)

Despite our knowledge of the plan of salvation, knowing that God is in charge and that there is purpose to our lives, we still have pretty bad days. I may go into more emotional stuff in another post but I can't begin to express how little I knew about grief and grieving until now.  After one of those bad days, as we tucked the boys into bed and reflected on the events of the day Nate talked a little bit about trials.  As Nate began to explain how we are facing trials and the purpose of trials etc. George sat up and said "Dad, this is really good I want to teach my kids about this, can I get a pen and paper to write it down?"  George is barely 7 years old. Like he requested he got a piece of paper and a pen and summarized what his father was teaching him.  This is what he wrote:

Not everyone reads first grader so I will translate:  "It was the hardest thing my parents had ever been through.  My Dad had to fire some people.  The baby in my Mom's tummy was going to die.  God gives us challenges to make us closer as a family. People either choose to get angry at God or get stronger."

We were impressed upon to say the least and immediately pinned it up on the boys' wall.  I like to look at it sometimes when I have the urge to punch a stranger in the neck:)  I can definitely see what the savior meant when he said that whole thing about being like little children.

So I tried going to the store with my sister to try and celebrate baby girl with some dresses but instead I broke down in the middle of Target staring at the infant clothes.  So I decided that we would have pink in our house if it killed me.  I bought a ton of fleece and made pink girly blankets for all of us so that we could celebrate in our own way, and honestly I just wanted to snuggle with my boys in some coziness.  The boys came with me to the fabric store and helped pick out their fabric, now their beds are covered in pink polka dots and stripes, it's awesome. Henry will not sleep without his cupcake blanky.

Until next time...

Maya Journey: The Second Trimester

The Second trimester: Advanced Maternal Age
At 15 weeks we had another ultrasound (this was maybe our third or fourth) and I had researched forever, early gender detection in ultrasounds.  I read about heart rate (high is a girl) and location of the placenta.  I was cautiously already convinced it was a girl because this pregnancy felt so much more intensely not fun, but I didn't want to get my hopes up.  I also had a hard time wrapping my mind around the idea of it actually being a girl, since I wanted it so bad!!  But I was desperate to go buy 8,000 dresses and tutus to console my pregnant barfy self.  Thankfully the technician said the hemorrhage and cysts were gone!  We were thrilled to not have to worry about that anymore and have a break from the doctor visits!  The baby was still pretty tiny and naturally her legs were crossed!  I mentioned the location of the placenta (I read about a study that was maybe 99% accurate at determining gender according to this) and the tech said that she had just read the same thing!  So wouldn't you know it the placenta was on the right side, meaning a girl!  We were not convinced but I was hopeful mainly because they didn't see a penis! (Sorry boys) There is a sound that every ultrasound tech makes when they see it is a boy, first they turn everything on and immediately upon seeing the baby they say "Ope" (like hope without the H) in a surprise high pitched tone, and then they ask if we want to know gender...it's a boy, we already know:)  With Oliver we even found out he was a boy I think around this same time because I had to have an ultrasound on my heart and the guy offered to show us the baby just for fun. So we were pretty excited and thankful for the good news.  The bummer was that for the first time with this baby I would have a break from ultrasounds, naturally just missing the window of being able to really tell if it was a boy or girl.

The doctor situation out here in Pennsylvania is such that you don't really have one doctor, you have one large doctor's office, with all kinds of flavors of medical professionals and you get who you get.  This was different for us because with our three boys we always had 1-3 at most working with us.  So every visit I saw a new face and watched them read through my chart for the first time right in front of me, approaching my complications with varying degrees of concern etc.  So I was glad that the concerns had been resolved.  So at my, I think 18 week visit, the latest doctor noted my "ADVANCED MATERNAL AGE" (I want that read in a deep echo-y epic man voice).  Apparently having a baby at age 35 (which I am) is like a grandma deciding to give birth!  The doctor was again, concerned, and wanted to send me over to advanced maternal fetal medicine for my 20+ week ultrasound.  I am used to being offered the prenatal testing and all that during pregnancies and have always turned them down because I never felt it necessary (we would not terminate a pregnancy).  So this doctor was suggesting testing etc. talking about the risks going up with age blah blah blah.  I just figured, cool a more high tech ultrasound that makes your baby look like its made out of lava.  The bummer was I had to wait THREE MORE WEEKS for my ultrasound.  The wait was killing me. Finally March 8th 2016 finally arrived!!!  Family members were counting down with me, eager to know if it was a girl!  I was wanting a girl so bad that I had decided not to do a fun gender reveal with friends present because I didn't know how I would react if it was a boy...seriously.  (Side note: as it actually got closer to ultrasound day I started to get scared that it was going to be a girl because I had no idea how to take care of a girl). The summer before we got pregnant I was at the park playing with the boys when at the softball field across the path I heard the crack of the bat and girls cheering, something inside me from that moment made me long for a baby girl...these boys aren't going to play softball, what a ripoff! I had loved the thought of a baby girl before that point as well, I even started having princess parties with my nieces and their mommies so that I could get some girl time in, and I vowed to do that annually, but when I heard that softball game, I just really wanted a girl for myself.
The day finally arrived and I practically skipped to the door of the doctor's office and Nate and I waited eagerly for my name to be called.  Finally, there we were, finally!!!  Jelly on my belly, dim lit room, and the question...do you want to know the gender?  YESSSSSSSS!!!  It's a girl!!  I cried I was so excited!  The ultrasound went on as Nate and I talked, in shock, about what it would be like to have a girl in the family!!!  No doubt I mentioned going shopping! Finally!!!  Have I mentioned... FINALLY!!!?

The ultrasound was pretty long and concluded with a visit from the doctor.

This is hard.  When I think about what happens next, I hesitate.  The doctor came in and explained that he had seen a few things in the ultrasound and wanted to take some time to walk us through the ultrasound findings.  At this point I wasn't overly surprised because I had predicted, since they would be looking with hi-tech gear and for an extended amount of time, that they would find something to stress us out.  Nothing could have prepared me for what happened next.  The doctor explained that our baby had an underdeveloped cerebellum and cysts on her brain, additionally he could see some heart defects, as well as possible issues with her fingers. Nate and I held hands as I lay there in that dim lit room staring in disbelief.  After a while I began to cry, and the doctor was so kind and wanted to make sure he wasn't overwhelming us with information.  Four hours later after learning about chromosomal defects, genetic testing, meeting with a genetic counselor via skype, etc we walked out of the office with advice not to look at the internet...which is almost as encouraging as when someone tells you to read about Job in the bible to feel better:)  Man...things must be pretty bad.

Like I said before, I have been offered prenatal testing in the past but had never been interested.  When I explained our feelings to the doctor he understood that we wanted to continue the pregnancy but that with all of the red flags, we may want to prepare ourselves.  I told the doctor that we would have to research and pray about what to do next, and the doctor said he would pray for us as well.  That gave us a lot of comfort and now having had a billion more doctor visits I have to say that I love and appreciate this doctor so much (Dr. Bringman).  Two days later we drove to Danville (the big hospital about an hour away) and we had an echocardiogram and met with a pediatric cardiologist who explained in more detail the present heart defects.  Following that appointment we had another ultrasound and an amniocentesis.  I have to say, as far as fun things to do, an amnio isn't like at the top of my list.  I mean you would think it would be fun right?  Actually it wasn't as bad as I thought,  The reeeally fun part was waiting 10 bleeping business days for the results.

(This is of the echocardiogram- super long ultrasound only looking at the baby's heart)

The Phone Call
Tuesday March 22, the phone rings...I may have been staring at my phone telling it to ring...or not ring (I couldn't decide what was worse, them calling or not calling).  The genetic counselor told me that she had the results and so I called Nate and he came home so that we could be together.  We thought this time we wanted to be together at home instead of in a doctor's office, we wanted to hear the results, hang up the phone and process it without an audience.  So we turned a show on for the boys in the next room, said a prayer, and received the news that our baby girl had Trisomy 18, also known as Edwards Syndrome.

Maya Journey: The First Trimester

The first trimester: Endless Doc Appointments
In November 2015 we found out we were having a baby! With three little boys in our house it has been a dream of ours to have a baby girl join our rowdy crew.  We prayed after finding out we were pregnant again, that boy or girl, heavenly father would send us a baby that would bring balance to our family.  I thought specifically of Ollie, I imagined this next baby and him having a special bond.
Very early on in my pregnancy I developed some complications that posed a threat to the baby and starting from the first trimester I was having several ultrasounds and additional doctor visits, my doctor had even predicted that I was having multiples because my levels were high, I was so sick, and I had the worst pregnant brain I have ever experienced.  I would (on multiple occasions) be driving somewhere and forget where I was going!  I remember trying to repeat in my head "go pick up Ollie, go pick up Ollie" and I would still pass it and have to turn around!  The first ultrasound was for dating purposes and to identify the number of fetuses.  The ultrasound indicated one rascal baby as well as multiple cysts on my ovaries and a subchorionic hemorrhage that needed close monitoring.  Since we had so many ultrasounds early on we were able to see our baby developing and nicknamed her our little seahorse.  I remember thinking that if it is a girl I'm going to make a giant glitter seahorse painting for her room!

 

(See...sea horses:)

I was extremely sick the first trimester.  My face was grey and I felt like death.  I remember one vomit session very vividly because I had barely chewed up my food when I had to run to the bathroom and nearly choked on what felt like an entire un-cut sandwich coming up my throat.  Thankfully we had lots of support from our friends who supplied meals, cleaned our house, took Ollie to preschool, watched the boys during appointments and so on.  It really was a life saver.  On one occasion (of many) a friend came over to help clean and I felt so sick, it is kind of embarrassing having even a friend come over to clean up your family's filth.  My friend was on her hands and knees scrubbing our kitchen floor and then at one point she went into my room (which was naturally also a total disaster), I remember trying to stop her, again embarrassing.  In my mind I said something like "no don't worry about that, you have done so much thank you..." but I think I maybe just groaned at her and fell unconscious. I lay there like a slug, it was my only defense.
Today at the doctor's office I heard a woman saying she was 13 weeks along, and all I could think was you poor poor woman, I'm so glad I'm not you!
For the first time, out of all of my pregnancies I thought, ok this is the last time (especially if it is a girl).  After this everyone is here. I'm getting too old for this.