Friday, May 13, 2016

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 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'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 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.