A Look Inside

How are you doing?  I get this question a lot, it seems like such a simple question, but man oh man is it hard to answer.  I feel good when I am busy, but the minute I see someone pregnant or a new mom strolling through the store with her newborn, my heart just sinks.  The minute I have nothing to do and I sit down for a minute, I find myself thinking about upcoming months and wondering how are we going to be able to do this.  Gosh, there are days where I feel like life is totally normal; well, I don't know what normal is these days, but sometimes life feels simple like the way it used to be.  Then I am quickly reminded that our time with Asher may very well be limited.  

If only you could be inside of my head and here all of the thoughts bouncing around up there, it is a bit chaotic to say the least.  I try to voice my thoughts and fears as often as I can because it helps me to say them aloud, which is part of the reason why I decided to start blogging again.  I am at this point where I have very conflicting thoughts in my head.  Do I prepare for this baby?  Do I pretend that he is going to be okay and that he will be coming home from the hospital with mommy and daddy and Micah?  Do I switch the rooms around and create this cozy space that I have imagined in my head where 2 little boys are going to sleep, play, and share so many memories together?  Or do I prepare for what the medical world says?  I have made a lot of decisions in my life, but nothing compares to any of the decisions we have had to make thus far during this pregnancy.  If I prepare for him to come home then I am in denial and if I prepare for the worst, then I have lost hope.  Now do you see what I mean about the thoughts in my head?  This is all so hard. 

Tomorrow we have our 20 week ultrasound screening.  I remember when I was pregnant with Micah I absolutely loved going to the doctor.  I loved seeing Micah on the screen and hearing his heart beat. Now I am terrified to go to the doctor.  I am scared of what news they will give us this time.  We have not seen a doctor since Asher's diagnosis, so I am uneasy about how they are going to approach us from here on out.  I am scared that there may no longer be a heart beat...Ah yes one day at a time Erin, I remind myself of this daily.  I tend to get way ahead of myself sometimes.  Life is hard, especially when it is out of your hands and totally out of your control.

I do not want to live in fear, but there are days where I am so scared of what the future holds.  I think that's why a lot of times I convince myself that everything is going to be okay with Asher, when deep down I know that may not be the case.  My husband keeps reminding me that it is good to be prepared for all outcomes, which is why we have talked through each one over the past week.  Despite the diagnosis and what the medical world tells us, we have decided to remain hopeful.  I remember when we first got the call about the abnormal quad screen.  My husband said to me, "Erin, just promise me that no matter what happens, you will not lose hope."  So we are hopeful, I know our God is bigger than any of this and what is supposed to happen will in His perfect timing. 

Thank you for listening to my thoughts.  I know they are sad and probably hard to read at times, but I appreciate each one of you so much.  I am thankful you have taken the time to read our story and even more grateful that you have taken the time to pray for our family.  

Just a little update on Hawaii:  The weekends are always my favorite time because we all get to be together as a family!  Unfortunately the last few weekends have been rainy, so we haven't made it to the beach.  I know exactly what you are thinking, gosh, I feel so bad for them!  Haha : )  Sam was supposed to go away for a few months on a work trip and his command felt that it was necessary that he stay home and be with me and Micah right now.  Praise God!  We are thankful for an extremely supportive command, I could not do this with him being so far away.  Micah is still extremely busy and extremely curious about everything.  He loves anything to do with helicopters and airplanes.  Thank goodness, we see helicopters several times daily out our window!  That's the latest in our little world way out here in the ocean.

Life is Precious

I am feeling rather mopey today and really missing home and all of the people that I love.  There are 4,718 miles separating me from home, which means a 10 hour plane ride and that isn't quite feasible right now.  If only I could just click my heels together like Dorothy and magically appear back in the place where life feels comfortable and familiar.  I'm thankful for my dear mom who just spent over an hour talking with Micah and I on FaceTime, already I'm feeling a lot better!  Isn't technology wonderful?

With that said, Sam and I have decided that is is best for us to stay in Hawaii throughout the remainder of the pregnancy.  We will be staying close to home and having baby Asher here, so he will be our little Hawaiian baby : )  We have plane tickets home in May and boy are we anxious to get home to see our families, but all of our travel plans are up in the air at this point.  Our primary focus right now is Asher and doing whatever we need to do for him.  I have been reading story after story about babies with Trisomy 13 and the best advice I found was to do whatever you need for your child, instead of to your child.  So we are doing what we feel is necessary for baby Asher.

It is so easy to get wrapped up in negativity and think why me when things happen that are out of your control.  I would love to go back a few weeks and change the path that we are currently traveling on, but that is not possible.  My dad always said, you are just one phone call away from your world being turned upside down.  You know, the same reason why he insists on not having cell phones at the dinner table.  His exact words, "If I am going to get bad news, I at least want to enjoy my dinner first."  Comical, yes, but until recently those words never meant anything more than dad just being goofy dad.  Yeah, yeah, bad news, okay dad whatever you say.  Well here I am years later, and I am the one receiving those phone calls.  I do not wish these type of phone calls on anyone, but the reality is, they are going to come, life is hard, life is messy, and stuff is going to happen that is way out of our control.

So here we are, in the midst of what I feel like is a bit of a nightmare.  I want to keep my focus on all the lessons baby Asher has already started teaching me.  This little boy may be small, but he sure does have a BIG hold on my heart.  It has been 2 days since his diagnosis and my eyes have been opened so much.

First things first, life is precious, so very precious.  This life that we have been given can be taken from us at anytime, we have no guarantee of tomorrow.  Phew, that is hard to hear, but inspires me to live everyday like it is our last and to love those around me like I may not see them again.  Please enjoy the life you have and try to always look for the good in life because it can be ripped away from us at anytime.  Thank you baby Asher for teaching mommy that life is special and we need to make the most of the time we have here.

After thinking of every reason why I did not want to go to the commissary yesterday, my husband came home early from work, so I insisted that it was best we take a family trip to the store.  As I was standing outside the commissary waiting for Sam and Micah, this crazy thought popped in to my head.  Here I am, kind of lost in my own little world and all of these people around me are just going about their own lives.  So many people walked past me and never even looked my way.  I want people to know about Asher and how he is changing our lives, but if no one asks how will anyone ever know?   Do I look different to them?  Do I look like I have been crying?  Do I look like my heart is breaking?  How often do we get caught up in our own little worlds that we forget to ask those around us how they are really doing?   Not just say how are you, but genuinely ask them how they are doing and actually be interested in their response.  Goodness, I have a social work degree.  I love people and I love hearing about people's problems, yet I am still so guilty of not actually talking to people.  I feel bad for all the times I have walked by people and never thought to ask how are they doing.  Maybe that person is going through something just as tough as I am.  Who am I to think that my problems are bigger and more important than the next person's?  They aren't, and what I am trying to say is we all need each other.  We need to reach out and help each other and actually care about those around us, even if they are complete strangers.

Oh baby Asher, look how much you have opened my eyes in just a few short days.  You were totally sent here to rock our world, flip it upside down, and make us better people because of it.  Please continue to open our eyes and show us how we should truly live our lives.  Mommy loves you so much and I am so thankful and grateful for you sweet boy.


Here are a few of life's precious moment's from the past few days:

This kid loves his dogs

Goodmorning!

A cool evening on the porch

Little boy with pink shoes, I'd say he looks good in pink!

This is our goofy boy, he has such a personality on him!

Life is Hard.

I am not even sure where to begin or what to say.  Okay...breathe...

We have been anxiously awaiting the results of the amniocentesis and now I am wishing we could take the results away.  My husband texted me this morning and said that the results are in and someone will be calling him back shortly with the results.  Looking back, this was a red flag, but I thought nothing of it.  Minutes went by and I could just feel the knot in my stomach growing, waiting for these results was like nothing I have ever done, I can't even describe what it felt like.  Then my husband, who is supposed to call me, comes barreling in the door with tears in his eyes.  I immediately knew that our world was about to be turned upside down, more than it already has in the past week or so.  Our sweet baby has been diagnosed with Trisomy 13, you know the one that the lady told us was pretty much out of the question.  My heart just sank and I grabbed my husband's hand and we just cried together.

Trisomy 13, I never even knew that this was up until a few weeks ago, now these two words have forever changed our lives.  The odds of a baby having trisomy 13 are 1 in 10,000.  When I saw this statistic, I knew that we were chosen by God to endure this trial, there is no other way to explain the odds of that statistic picking us.  Does that mean we are okay with all of this?  By no means, but I do know that we serve a God who loves us and cares for us and keeps our best interest in mind.  He knows what we can handle, and what we cannot handle on our own is where He meets us and carries us the rest of the way.  This trial has already been extremely hard and I know that it has only just begun.

We met with our genetic counselor today after receiving the devastating news about our sweet little baby.  She too was shocked at the results of the amnio test.  She discussed what this means in terms of my pregnancy and shared the gut wrenching statistics of trisomy 13.  Most babies do not make it to birth and of those that do, their lives are short-lived.  So here we are, almost half way through the pregnancy and we are thinking about stuff I never thought we would need to discuss.  We have talked about the interventions we want to happen, quality of life, photographers, memorial services, just crazy stuff that no pregnant mom should even be thinking about.  I still feel like I am in a dream and just wish I could somehow get out of it.  We were given the option to terminate our pregnancy and my husband and I both immediately shook our heads no.  We both knew that that was not an option and not a path we were willing to take.  This baby is ours and we have made the decision to love and care for it as best as we can, no matter what the future holds.

Are we scared?  Oh my, so scared, this is not something you can ever be prepared for.  I am scared of what's to come, but I am going to make every effort to enjoy this little baby inside me and give them the best life possible, just what they deserve.  I am scared of people asking me about my pregnancy, what will I say?  I am scared about delivering a baby knowing my time with them is so limited.  I am scared of loosing my sweet baby.  I am scared of saying goodbye.  I am scared of the next few months because I have no idea what any of this will be like.

My husband made a really good point this evening and said that this baby will never know anything except love and happiness.  And that warms my heart knowing that.  We are blessed to be this baby's mommy and daddy and he is blessed to be our child.

In our previous pregnancy, we chose not to find out the sex of the baby because we wanted to be surprised.  Due to the unexpected news today, we decided it was best to find out the sex of our sweet little one.  The verdict is, we are having a little boy!  We have spent all evening picking out the perfect name for this little guy.

Asher Keoni White.

Asher:  happy or blessed in Hebrew
Keoni:  God is Gracious/John (John is our grandfather's name on both sides) This is obviously Hawaiian, since this little guy is our Hawaiian baby!

Please please please continue to pray for us, as our journey with baby Asher has only just begun.  This little guy has already taught us so much about life and I know there is a whole lot more to come. Thank you for the continued prayers and support, we can feel them all the way out here in Hawaii.

Hope

It has been a few days since we received the news about our sweet baby.  There has been lots of crying, sleepless nights, some very serious conversations, lots of prayers, ice cream, more tests, smiles, laughs, lots of friends, oreos, and more doctors appointments.  Let's just say we have been quite busy the past few days!

Friday morning we met with a genetic counselor, who was able to better explain chromosome abnormalities.  She was very helpful and was very confident that our baby did not have trisomy 13 or trisomy 18 based on numbers from a previous test.  Praise God!  This was comforting because I know Sam and I both had feared this may be the case.  We decided to undergo an amniocentesis in order to get a definite answer of what we were dealing with.  The amnio went very smoothly and there were no complications.  I am extremely grateful for a husband who sat by my side and held my hand the entire time and didn't pass out : )  We will receive the results of this test by phone on either Monday or Tuesday.   Regardless of what the diagnosis is, we believe that God created this sweet baby in His image and that this baby is made perfect in His eyes.  What a blessing this little baby has already been to us, he or she has already taught us how precious life is!

Our biggest prayer right now is that baby would continue to fight and grow.  There are some real concerns with the umbilical cord and blood flow, meaning this could cause growth problems with the baby.  We are praying that baby can continue to grow and develop!  I know this sweet little baby is already a fighter.

Ideally, we would like to go back to the east coast and have the baby there, where our primary support system is.  We have so many friends and family there that would step in and help us in a heartbeat.  From what we are hearing of the insurance side of things, it sounds very promising.  The real concern is timing and when would be the best time for us to travel home.  And obviously there are A LOT of logistics that would need figured out fairly quickly in the upcoming months.  We aren't jumping the gun just yet, we need to get some more confirmation from the doctor that baby is growing as he or she needs to be so that we can make the long trip home.  We feel confident in our doctors here in Hawaii, but at the end of the day this is a very small island.  Our access to doctors is extremely limited and there is a rather large ocean separating us from the mainland.  Praying God would work out all the kinks and details!

In the mean time, we are trying to live life as we normally do.  Yes, we have our moments of tears, but we have this 15 month old little boy who keeps us going and brings us so much joy.  Goodness, so much joy I cannot even explain it.  There has been so many times this past week where I have just sat back and watched Micah play with tears in my eyes.  I am so thankful for this blue eyed boy and so grateful that I get to be his mommy.  He has no idea what is going on and reminds us what it means to just celebrate and love life.

We so bad want to be normal people.  We want to hang out with our friends, laugh, and smile.  And we have done just that this week.  I don't want people to look at us and feel sorry for us or feel weird around us.  We want you to be a friend to us and stand along beside us in this battle.  We have received so many phone calls, text messages, and Facebook comments this week that it has been totally overwhelming.  I have read each and every one of them several times and each one has brought tears to my eyes.  We are so thankful for each and every one of you and appreciate all of your prayers and support.  You all have kept us going and reminded us that we are not alone and that we can keep on keeping on.  Thank you for that.

Watching the R/C helicopters, this boy loves anything to do with helicopters and airplanes!

First Jamba Juice : )

Of course, he loved the monkeys!

Day at the zoo!

All smiles, now do you see what I mean about loving life? 

One Day at a Time

When I first started this blog a year ago, I envisioned it to be a place where I share all of our wonderful adventures of this beautiful place we call our home.  Hawaii is still absolutely beautiful and we totally love it here, but our life here just got a whole lot more complicated and because of that a whole lot more meaningful.  A week ago our biggest concern was what to make for dinner, how to keep an energized one year old from climbing on top of the kitchen table, and when is the sun going to finally come out again.


A week ago, I got a phone call from one of the midwives, a phone call that I will never forget.  One that I have replayed in my mind over and over again, wishing I was making it up.  She called to inform me that my quad screen had come back abnormal, meaning that our little baby is at risk for Down's Syndrome.  She explained that this does not mean our baby has Down's Syndrome, it just means that the chance is greater.  And this is when our whirlwind started.  Sobbing, I called my husband at work to tell him the news.  He too did not know what to say or think.  We were advised to call the doctor and schedule an ultrasound.  This was a Thursday, we had to wait until Monday to go to the doctor to find out more.  So much of what we read said that false positives are common and not to be worried that everything would be okay.  I tried reminding myself of that over and over again.

And then the ultrasound began...Soon after the nice lady began, the doctor came in and began looking at some of the images.  Immediately he identified that our sweet little baby had an extra digit on both of its hands.  He also was able to see that baby's heart had an abnormality.  Our whole world came crashing down right at this moment.  I had no idea what any of this meant, but I knew it wasn't what I envisioned for our child.  It was not the perfect little baby I had imagined bringing home from the hospital in a few months.  It was not the baby I dreamed of for our perfect little family.  The doctor gave us lots of information, most of which I cannot even recall because I was still trying to grasp the fact that there was something seriously wrong with our baby.  I wanted to run out of the building and never look back.  I wanted everything to go away and our lives to go back to normal.  The next step was to see a pediatric cardiologist in just a few short hours.

We walked out of the office with tear filled eyes and picked up Micah from the daycare.  Oh Micah, I am so grateful for this lovable, goofy, happy boy.  He brings so much joy to our lives, even when we do not know what the future holds for baby number 2.  I scooped that little boy up and gave him the biggest hug, I didn't ever want to let go.

We made a few tough phone calls to our family and informed them the seriousness of what we were dealing with.  Thank goodness for such wonderful family.  They may be thousands of miles away, but they have given us so much support and encouragement over the past few days.  In a lot of ways, they have kept us going.

We dropped Micah boy off at a friends house and back to the hospital we went.  A pediatric cardiologist? Is this real life?  Geez, I didn't even know doctors like this existed.  The doctor was wonderful, he made us feel comfortable.  He talked about our baby like he or she was going to live and was going to one day be running through our house and climbing on tables, just like Micah.  This was comforting to hear, just knowing that he believed there was hope for our little one.

The diagnosis:  Baby has atrioventricular canal defect.  This means that the baby only has 2 chambers, whereas we have 4 chambers in our heart.  The heart is working and pumping, but between 3 and 6 months of age, the baby will need open heart surgery.  The doctor was extremely positive about this diagnosis and said he has plenty of patients who have undergone this surgery and are normal, active children.

Comforting, yes, but this mom is still not convinced.  There is still talk of Down's Syndrome, and even Trisomy 13 or 18 (Down's is Trisomy 21).  Nothing has been confirmed and we are anxious for more answers so we can prepare for the future and what is best for this baby.  We will most likely be getting an amniocentesis so that we can receive some conclusive results about what we are dealing with, and so we can better prepare for what's to come.

The past week has been somewhat of a blur and we have our moments of okay we can do this, and other moments where it just feels like this is all too much.  We have received so much love, support, and encouragement over the past few days and that totally has warmed our hearts and brightened our spirits.  This little baby (we have a feeling it's a girl) is so loved already!  I am standing firm that God chose us to be this little one's parents and he trusts us to care for and love them just as we would any other child.  And that is just what we are doing.  We are praying constantly that God would be at work in this situation, in every aspect, and hope that you will join us in praying for our little one.  We have no idea what the future holds, but for now, we are taking it one day at a time, and loving this sweet little one as much as we can.

I honestly do not care if no one reads this blog, but I know writing my thoughts down is going to help me deal with all that has been put on our plate.  And with our friends and family being so far, this helps keep people in the loop.  Please continue to pray for us, we are so scared, but trusting in The great Physician.

God has such a subtle way of reminding us He is on control.  This picture was taken on our way home from our first ultrasound about a month ago, before we knew there was something wrong with our baby.  It was absolutely beautiful, but now it takes on such a greater meaning then just beauty.  This was God already letting us know that He was at work in this baby's life.  

Happy Anniversary!

It's funny, just a few weeks ago I was driving the old southern maryland commute to go see my husband.  You know, the awful 270, 495 traffic ride!  A ride that I can pretty much do with my eyes closed at this point.  This was a ride that I once took to meet my future husband, a ride I took to see my boyfriend, a ride I took to pick my fiancé up from a year long deployment, a ride I took to interview for a new job, a ride that I took as a newly wed filled with all my loot to move in, a ride that we took with a new baby after visiting Grammy and Poppy for the weekend.

As I was driving, all of these memories came flooding back to me and I was reminded of how grateful I am for each memory.  This was our first home together and the place we started our journey as a couple and then parents.  Here we are, 2 years later, and look at the adventure God has brought us so far!  Phew, I cannot believe all the changes we have experienced in just 2 short years of marriage, but I wouldn't change a thing!  Never in my life did I think we would be where we are right now, but I wouldn't trade it for anything in the world!  I am so looking forward to what the future holds and thankful I get to share it with my handsome husband!

Happy Anniversary husband of mine!  Another wonderful year in the books!  

Back on the East Coast

Phew, it's been quite some time since I have written on here! Life just gets so busy sometimes and time goes by so quickly! I'm sure you all can relate! This boy of mine is keeping me on my toes at all times of the day. Gone are the days of sitting Micah down and knowing he will not move!  What a joy it is to watch him grow and explore life!

Micah and I are now on the east coast for a while spending time with friends and family! We had a LONG trip home, but it is so good to be here.  I think everything that could possibly go wrong went wrong. And of course it was my first time flying home with a baby.  We counted that we spent a total of 17 hours in the airport/airplane.  Did I mention that my flight was supposed to be a direct flight to NJ totaling 9 hours and 38 minutes!  Flight delayed, lavatory issues, re routed to Ohio, more lavatory issues, waiting on the taxi way, more waiting, and finally feet on the ground! I felt like I lived on the other side of the world after that trip! So happy to see my sister and law and best friend there waiting for us at the airport, I even had tears in my eyes!

Since getting home we have been busy busy spending time with everyone.  I love seeing the joy that Micah brings to all of my family.  They all love him so much, this time with him means more to me then I'm sure they realize.

We miss daddy a lot, not sure when we will be seeing him again, but I know Micah and I are both looking forward to that!  We are taking lots and lots of pictures, so he won't miss out on anything!  

Currently, we are in North Carolina on our way to the beach for a Bergstrom family vacation!  3 wild boys and 7 adults, should make for a fun and memorable week at the beach!  Oh yeah, and my best friend is home from Africa with her sweet little boy and will be at the beach the same time, God's timing is so perfect!!!

Here are some pictures of our time back on the easy coast so far.  Fireworks, Fourth of July, park fun, cousin time, and just hanging out...we have been busy!