Sunday, July 31, 2016

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...

Thursday, July 28, 2016

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 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).


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...

Thursday, July 14, 2016

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 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 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...