Tuesday, December 11, 2012

So many why's....and heartache

No one can truly understand the hurt and pain that someone goes through when they lose a child….an infant whose life was all too short.  Not one person grieves the same. Sure there are similarities but there is only one person who truly understands the hurt, the sorrow, the pain, the grief and He’s the Creator of all things. The world we know is not the world that God created, no, this world is a cry for help…a cry for guidance…a cry for forgiveness…a cry for someone, something greater than we can comprehend.  This world is full of temptations, lust, despair and many other undesirable situations but God never intended for our lives to be painful and full of disgrace.  He wants us to surrender to Him, thank Him for everything, no matter the circumstance, and in ALL situations have faith in Him.  But tonight I am having a horrible time with this….I cannot do anything to hold my son again.  Yes, I know that living a righteous life will one day allow my son and I to meet again but that is not what I want to hear right now…that is not a good enough answer for me right now.  My selfish being wants him here, in flesh, to smell, to hold, to sing to, to have lying against my skin so I can feel each breath he takes and hear each sound he makes.  No matter how loud I scream, no matter how much I cry, no matter how long I hold my breath, I will never experience this with him here on earth.  I try and tell myself that this was not Jaston’s life, he was never meant to see the horrible things that happen in this world and I am thankful that The Lord “saved” him from all this grief and despair but I cannot understand why I am telling myself these things.  Why can’t I just ask “why?”  Is it okay that I am asking “why?”  Was I not a good enough mother to hold Jaston longer than 40weeks and 3days?  Had I been allowed more time with my son would I have taken his life for granted and not really seen the value in every infant, child, or adult’s life?  People think that I am “okay” and have a “great outlook on things” considering what I have been through but this is not completely true.  I only wish they could see how bad I am hurting.  I try but no matter how hard I try the hurt is still there, no matter how much of a “mask” I put on the pain and sorrow I feel will not go away.  I WANT MY SON BACK!!!!! Lord, why must I feel this way? Why must I cry and still feel no relief?  My son was beautiful; my son was a true blessing; Lord I wanted more time with him, why did you have to take him from me?  Lord please cradle my heart in your hands tonight, Lord please bring me peace tonight.  Lord do not allow me to forget about Jaston and the spiritual warrior he was.  Lord help me to find peace and joy this holiday season.  Help me Lord to remember the true meaning of Christmas.  Help me to teach my children the true meaning of Christmas.  Lord I want them to know You, I want them to praise You…I want to praise You, but I need your guidance, I need Your strength because right now I am falling and I am having a hard time walking through each day.  I am having a hard time breathing without wanting to scream and cry.  Lord please give Jaston the biggest hug and kiss you can give him and tell him it’s from his mommy and that I am thinking about him. Jaston, I love you.

My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9

For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. Romans 8:18

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelations 21:4

Thursday, September 27, 2012

I really wish I could figure out how to get the music I want to play on this blog to play.

One week in Heaven

It has now been one week since Jaston was brought into this world; one week since he met our Creator and 6 days since we had to say our last good-byes.   The days and nights are starting to run together now.  I feel as if each day becomes a little easier to wake up to but each day the emptiness in my heart is still there.  There is a hole that I want filled with the sounds of Jaston crying, the joys of watching his first steps, the moments of comforting him when he is hurting.  I want to share something with you that I wrote earlier in my pregnancy when we were faced with the possibility of delivering him around 25weeks:
God gave us a gift so special and small.

He gave us you, the best blessing of all.

How perfect you are from your head to your toes,

With teeny tiny fingers and cute little button nose.

A beautiful boy sent down from above

To have and to hold, to cherish and love.

From the beginning you’ve built a place in our hearts;

A place that will keep you close and not far.

We love you so much we hope that you know,

We truly desired to watch you learn and to grow.

To see your first steps, to walk and to talk

are all wonderful things we all had sought.

But God has a better plan, one we think you will like.

For He wants you in Heaven to ride your first bike.

How amazing and bright we’re sure it will be

And how fun for you that you’ll get to see!

Don’t be afraid, we will join you some day,

And gleefully dance alongside you in Heaven’s parade.

Until the time we can meet again,

We pray that the Lord protects you with His right hand.

We are thankful for the time that we shared

And know we can reach you through endless prayer.

It’s now time for us to depart

But please know you will live on forever in our hearts.

Though Jaston may not be here in his flesh, he is here spiritually.  Something I didn’t share in my previous post was that I believe Jaston’s spirit was with us for a couple hours after his birth.  Although his body was “lifeless” I felt his presence all around me.  At one point Anberlin stared out the window of our hospital room, as she held onto Jaston in my hospital bed, but I couldn’t grab her attention.   I attempted to snap my fingers by her face and pressed on her shoulder but she didn’t have an immediate response.  Then she smiled and had a small giggle and said “haha, baby Jaston” and looked away from the window. 
Every day the sun has been shining and I can’t help but be thankful for another beautiful day with my family.  Every morning I wake up and say “good morning” to Jaston and every evening I say “good night.”  I tell him how much I love him and I pray to the Lord that He will guide me in living an honorable and faithfully fulfilling life.  Landen told me this morning that he loved baby “Jaspin” and that he was an angel.  I asked him where he heard Jaston was an angel and he said “he just knows” and then he walked away.  Children are a gift from God and I have been very blessed to have 4, well 5 if you include the unborn infant we lost around 10 weeks and 4days.  Today my goal is to look at some pictures of our little messenger boy to share with my amazing family and friends.  I also need to contact Chaplain Bill and begin to compose an obituary of my little man as well as begin planning a date for a memorial service.  Please pray for comfort to get through this day.
Random thoughts today:

1.       Soon this IV poke on my L arm will heal and that will just be another turned page in the book of Jaston.
2.       Words that mean messenger in different languages
3.       Designing a tattoo with angel wings wrapped around either Jaston’s foot print or birth symbol or birth flower.
4.       When I see otherr mothers I am not mad nor do I think they are lucky. I am not jealous of them. I just hope they know and understand how blessed they are and how it is a true miracle to carry the life of a child in their womb. When I see a newborn, I'm a bit naive (I think that's the word I want to use) right now. I don't think they are cute, I keep searching for a baby that looks like Jaston, he was perfect and will always be perfect.  He is my angel, my little messenger boy.

Today’s Devotional:

RELAX IN MY EVERLASTING ARMS.  Your weakness is an opportunity to grow strong in awareness of My Almighty Presence. When your energy fails you, do not look inward and lament the lack you find there. Look to Me and My sufficiency; rejoice in My radiant riches that are abundantly available to help you.

Go gently through this day, leaning on Me and enjoying My Presence.  Thank Me for your neediness, which is building trust-bonds between us.  If you look back on your journey thus far, you can see that days of extreme weakness have been some of your most precious times.(How true this is).  Memories of these days are richly interwoven with golden strands of My intimate Presence.  This devotion could not have fit better for this day. Wow!  Open your heart, and He will speak to you.

                Deuteronomy 33:27; Psalm 27:13-14, from Jesus Calling by Sarah Young

On a side note, I have had requests for my address and I am not sure the best way to send this information out so if you would like it please email me at tabitha_dawson@hotmail.com and I will reply back with it.  Thanks for your thoughts, condolences, and prayers during this difficult time. 

Jaston's Birthday

It's been 6 days now since my family and I welcomed Mr. Jaston into this world and also said our "Good-byes." I can't even begin to explain my thoughts and feelings about losing a child. I have been contemplating on how to approach this post and what I would talk about and have decided that I will just let the words come out on their own (so I am not going to proof read it either). When I am approached by those who know my family and I's situation I feel they expect me to be a horrible wreck, and though this isn't easy, the approach my family and I have taken with this heartbreaking journey has been one of faith, love, & compassion. We have had time to pray and "prepare" for the worst and hope for the best. We have had multiple conversations with our children about the possibilities of Jaston not coming home with us from the hospital and to the best of their ability they seemed "okay" with what we were telling them. So though this journey has been far from easy, we are managing what we've been given through endless prayer and belief in Christ and eternal life through Him.

The morning of September 20th, 2012 was full of emotion. I began to question if having an induction was the right path? Was this the path the Lord wanted me to take? Was I beginning to try and control this situation again? Well regarding the control part, yes, somewhat I was. I wanted the birth of my son to be somewhat controlled so it could be enjoyable. I didn't want his birthday to be full of chaos and missed opportunities. I wanted to enjoy whatever time I had with him and I wanted his brother and sisters to be part of his story (along with other family members and friends). We began the day at 0500 (well for me I began the day around 0350). I could not sleep, and who could with the anticipation of giving birth to your child within the next 24 hours and not knowing what the outcome was going to be. Jaston could sense something was up too because he was up all night moving around and trying to get comfortable but it didn't seem he could find a comfortable position as my stomach would morph into different shapes it seems every 5 minutes. ..........

I miss you little man. What I would do to have back those days of watching you and feeling you turn about inside of me. I would do just about anything (besides go through the pain of losing your brother and sisters as well) to have you for another day even for another minute. I know you are in a much better place, serving the Lord eternally with eternal happiness, looking down on us and hearing us pray and grieve over you. I wonder, have you met your sister/brother yet that I have yet to meet? Did you meet your great grandmother Audrey? How is she? Is she feeding you like crazy (she is an amazing hostess)? Do you even eat? Are you still an infant? When you entered into to Heaven, was there a celebration? When you left this earth did you become a child? So many questions I have and can't wait to have answered when I meet you again someday in Heaven. Jaston please tell God to guide me in living a righteous life and know that I am going to try my hardest to lead a life that your father and brother and sisters can follow so they to can join us in Heaven someday. Know that I love you so very much and will always carry you in my heart.

I probably slept for 3 hours the night before going to the hospital. We got the kids dropped off at daycare around 0635 and arrived at the hospital at 0700. My mom and sister joined Zach and I. After getting admitted and entering the room that would forever change our lives (#3505) I met the nurse that would accompany us along this ride. Her name was Michelle and she was wonderful and I am glad that she was the one chosen to meet my little man (this is the nickname I chose for Mr. Jaston, his brother Landen's is Mr. Man, his sister Tara's is sweet pea, and his other sister Anberlin's is either bug (for love bug) or princess). We began the admission process of answering an array of questions, do you have drink, are you a victim of abuse, do you do drugs, all of the fun questions you are glad to answer no to but sad for the other infants born into these situations. I then asked the question how this induction would work and when Dr. Cole would be in to get the process started. Michelle then informed me that Dr. Cole was not in today. So I asked well then call Dr. Boyle, and she also said Dr. Boyle was going out of town at 1100. WHAT!! Then this induction is not happening, I replied. I can't have a new doctor deliver Jaston; I can come back another day. (I was kind of okay with this idea because I wasn't 100% ready to deliver him anyway, I would rather have him live inside of me for as long as his little heart desired). Michelle made some phone calls and found that Dr. Cole was going to be in but not tell the afternoon. Okay then, we can continue the induction. One of the other OB-GYNs started the induction by placing cytotec on my cervix around 0835. I was 1cm dilated and maybe 50-70% effaced at this time. My husband and I decided to monitor Jaston throughout this whole process so in the event he became intolerable to labor we could say a blessing for him and continue prayers. He was strong and very tolerant of labor at the beginning. Natalie and Robin, our amazing family/friends, also the photographers for the day, showed up around 0845. My aunt Sherri and cousin Heather also arrived shortly after. As the morning went on I began to worry about when would be the right time to pick up my other children from daycare. My husband and I wanted them there for the immediate time after delivery but didn't know how long the induction would take and didn't know who should go get them. Should Zach leave me and go get them right after lunch, should we give directions to someone else like my mom or sister or aunt? My sister told me not to worry and it would work out the way it was suppose to. Around 1300 I received my epidural because I wanted some pain control prior to Dr. Cole breaking my water. Dr. Lun did a fabulous job too. I know it may be hit or miss but the pain control was phenomenal. It did exactly what it should, it numbed my abdomen but not my legs so I was able to move throughout the process and also feel the urge to push. The Lord was surely watching over us all this day and was helping this process go as best it could.

Lord I thank you for helping to monitor and assist with all the events that happened this day, knowing what was to happen in the end You never left my side and gave my husband and I the strength to endure the hurt and sorrow that was to come.

Dr. Cole broke my water around 1330 and I was 5cm dilated. She was not sure if Jaston was head down or not because what she was feeling was soft and not "familiar." After she broke my water Jaston became less tolerant of the contractions. His heart rate began to drop fairly rapidly and at one point was in the 50s with each contraction. At this point I became scared, anxious, sad...

I want to hold you alive Jaston, please stay strong, this won't last for long. I am sorry for doing this but it is too late to turn around now. Lord I need you...please please don't take Jaston now.

Michelle repositioned me and put oxygen on me to see if this would help. Positioning me on my right side seemed to help temporarily. Chaplain Bill (whom I haven't mentioned tell now) had been in and out all day and praying with us and said a prayer for Jaston and us at this time. How thankful I am that Bill was there. He is truly a man that has been blessed with God's word. With the anxiety and sadness Zach and I felt with Jaston's deteriorating heart rate my sister felt I needed to be cheered up and asked if I wanted to see Jaston's brother and sisters. What? They are here? What a relief, thank you Monica for arranging my aunt and cousin to go and get them while Dr. Lun was giving me an epidural. It is crazy how things do work themselves out. Landen, Tara, and Anberlin entered the room and it was such a wonderful feeling. They kissed my belly and said hello to Jaston and his heart rate normalized for awhile. He knew they were there and I believe that his heart rate normalizing was his way of telling them he loved them and was glad they were there. My labor progressed quickly after my water was broken and I began to feel pressure around 1430. Michelle checked my cervix and I was 6cm. I then felt greater pressure around 1440 and she checked me and I was 8cm. She called Dr. Cole and we texted Dr. Reuter. Both arrived within a couple minutes. My aunt and cousin accompanied Tara, Landen, and Anberlin to a waiting room down the hall. My dad arrived around this time as well and he stood behind the curtain with Bill while I began the process of pushing. Dr. Fenton and Pam (palliative care team) were unable to make it to Jaston's delivery as they were in another delivery at the same time. Those in the room with Zach and I were my mom, my sister, Robin, Natalie, Dr. Cole, Dr. Reuter, Michelle, the L&D coordinator (I apologize I cannot remember her name), Bill and my dad. Jaston's heart rate became very rapid around 1435 (180s-200s) which is a final sign that he was very stressed and beginning to try and compensate for the lower heart rates and the failing of his body.

Jaston I know you are strong; you have been from the beginning. You have proved to be a warrior and have fought for your life from day one. When the doctors felt you wouldn't survive past 27weeks you fought even harder and that wasn't your only job, was it? Not only did you fight for your life every second of every day you began to fight for others and their spiritual walks with Christ. The statement "There is no foot to small that it cannot leave an imprint on this world" fits your life perfectly. You are a messenger sent from above and the message has clearly been received and though it seems our time has fallen short and you are soon to leave this Earth I beg that you continue your fight because I will get to hold you soon.

 I began to push around 1445 with Dr. Reuter holding my left hand and Zach holding my right. With each push Dr. Cole was able to get a glimpse of Jaston's lips...yes lips. That "unfamiliar" feeling I mentioned earlier was Jaston's mouth. This could be one of the reasons Jaston was intolerant of my contractions. I had to see, so I asked for a mirror to watch while I pushed and I am so glad I did. What an amazing sight to see, all this time of not really getting to see Jaston's face on ultrasound and he made sure it was the first thing we got to see in person. Sure enough his lips, then nose, and Oh my gosh an eye and the other eye. Before I knew it he was out, I was scared, Zach cut the cord and he was placed on my chest..."lifeless" but yet so full of life. I began to sob and ask why? Vigorously rubbing his back I stared at his limp body.

Jaston please wake up, I need to see you move. Show me something, please cry...please do anything.

I looked up at Dr. Reuter, and hysterically asked "should we do something" and her response along with my husband’s was an answer in itself. My husband immediately bent over me and firmly held onto Jaston and I both and Dr. Reuter responded softly "Do you want me to do something?" At that moment I knew, Jaston's purpose was fulfilled. The life I knew, the life I had with him was over when the cord was cut. Chaplain Bill immediately came from behind the curtain and began baptizing Jaston as we held him close. Everyone in the room was silent and we all recited the Lord's Prayer followed by the bedtime prayer "Now I Lay Me Down to Sleep." Jaston entered into this world and ascended to Heaven at 2:51pm, weighing 3 pounds 6 ounces and was 15 ½ inches long.  Tara, Landen, and Anberlin were then brought into the room to meet their little brother with a child life specialist named Michelle. She had met with us and them earlier in the pregnancy to help us prepare them for Jaston's delivery. She had shown up a little earlier in the day and was there to help them understand things during Jaston's birth and help answer any questions they may have. Tara was unsure of holding Jaston at first and we weren't going to force any of the kids to hold him but she did ask later in the day to hold him. Her reaction was kind of funny and cute. Jaston's eyes were slightly open for a period of time because his eyes were swollen from being pushed out face first. As Tara held him she asked him if he wanted to have a staring contest. She then stared into his eyes and said "man your good." I am glad she chose to interact with him because I wanted her to be able to find some closure as well. Landen held Jaston long enough to take a picture but then said he would hold him when he was alive. He, along with Anberlin, was very interested in seeing his hair, ears, hands, feet and butt. I pointed out to Landen that Jaston also had the same cowlick in the front of his head that he has.

Jaston you had the most amazing soft skin, the longest fingers and nails, and the most abundant head of hair I had ever seen. The way you would fold your feet together and hold your arms close to your chest with your hands rested together as if you were praying for us all and yourself during the moments after your birth was truly breathtaking. Having you melt into my chest was the most wonderful feeling and I will never forget how it felt especially with your little butt cupped in my hand. Words can't describe how perfect you are. I cannot wait to see you again.

My little mother hen, Anberlin, was instantly drawn to Jaston. Zach was standing beside me and holding Jaston when Anberlin decided she needed to see her baby brother. She pulled a chair from across the room and placed it right next to Zach and stood on it and looked at Jaston. She wanted to hold him and insisted on holding him without any assistance, "No, I do it. Don't touch," she would say. She would sit there so patiently, gazing into his eyes, admiring the perfection that he is. Out of all the children, she asks about him the most. Throughout the day, she will ask "where Jaston go," "where my Jaston." "He in your belly?" We have to continually tell her that he is in Heaven now; he is not here and is in our hearts. She seems okay with that response for awhile until the next time she asks. We have a little teddy bear we began incorporating into our maternity photos earlier in the pregnancy and after he was born we also had a bunny that he took pictures with. These two items, along with a blanket I had made for him, a knitted blanket my sister had made, and the outfit and hat he wore have been the most valuable "tools" in helping me, well us, to grieve. They have provided comfort and something physical to hold onto in his absence. Anberlin carries around his bunny and says "my Jaston." We have encouraged Tara and Landen to talk about their feelings about Jaston but both aren't quite ready for that. Tara says right now that it is too sad to talk about and Landen says that “Jaspin” (this is how Landen says his name) is dead and went to Heaven and is in his heart. It is hard to talk about and in time we will all be able to openly express our emotions and thoughts about this little man and share our feelings of his birthday.  Zach and I, along with Tara, Landen, and Anberlin, sang “Rock-a-bye-baby” and “Twinkle, Twinkle Little Star” to him.  These are two songs that I have always sung to my kids at bedtime since they were infants and doing this helped us all to make Jaston part of the family.  When I sang Anberlin these songs the other night I couldn’t help but tear up because now they mean so much more.  Natalie and Robin brought a birthday cupcake decorated with a J on it and it was on a plate that read “For this child I prayed.” What a great idea because we celebrated Jaston’s birthday by singing him “Happy Birthday” and had the kids blow out his candle.  We then divided the cupcake into thirds and each child received a piece to eat.  My family stayed with us at the hospital for a couple hours after Jaston’s birth and we all took family photos.  I am glad we had such amazing photographers to capture every detail throughout the whole day.  What they did was so important to us and we will be forever grateful for their time, commitment, and compassion they have towards this family.  They spent 12 hours capturing every laugh, every tear, every emotion, and every moment.  I couldn’t imagine this experience without them.  After everyone left, Zach and I were finally able to spend quality time with Jaston.  We were able to reflect on Jaston’s life and embrace the moments we had with him and each other.  My husband has been amazing throughout this whole experience and I could not have embarked on this journey without him.  Although Jaston’s life was all too short he has engraved his name in our hearts forever.  Being together in that room with our son was priceless.  We needed that time to reveal how important every aspect of life is and how blessed we have been to have carried and held a messenger of God.   How blessed we are as parents to know that our son was protected and shielded from all the pains and sorrows of this fallen world. 

Jaston, the hardest part of being your parent was saying goodbye but know that the best thing for you was to say good-bye. 

The way we have looked at this situation is we were surrogate parents to an angel working for the Lord.  I received an email shortly after we came home from the hospital and I’d like to share a portion of it with you because I feel it fits well with what I am saying.  D.K. wrote:

Bless you and your family, you’ve made a choice that most would have walked away from and never gotten to experience the joys of one of God’s special angels.  He does not choose just any person or family to receive his angels, you and your family have joined us special chosen few, how blessed you are.

When I read this I cried and felt happy at the same time.  It helped reassure Zach and I in the decisions we had made thus far.  The decisions have not been easy nor has the road been smooth that we’ve been traveling.  We have had to rely on our heart and faith in guiding us through.  One of the important pieces to this puzzle has been time.  My husband and I had been blessed with time to prepare for the birth of one of God’s gifts.  We allowed our decisions to be guided by His grace and mercy and were not disappointed with the outcome.  How could we be, everything had gone and has gone so well.  We miss our son but we know that if we live a righteous life and live by God’s word we will soon see him again.  That night we held him close, we stroked his hair, we showered him with kisses, we shed our tears, and we prayed.   We slept with him in-between us on my hospital bed, and though these beds are uncomfortable it was the most comfortable night’s sleep because having him close and against my chest was heartwarming.  Zach and I spent the next day (September 21, 2012) cherishing the final moments we had with Jaston.  We didn’t rush anything and were in no hurry to leave the hospital.  Chaplain Bill made a couple of visits to pray for us as did Dr. Cole, Dr. Fenton, and Pam.  My mom also arrived early afternoon and my sister stayed home with Tara, Landen, and Anberlin.  As the day turned into late afternoon and then to early evening it was time for Zach and I to leave the hospital and return to our home here on earth.  I dreaded this moment.  I feared this moment. The moment we were going to have to say good-bye to Jaston’s body.  We both knew he had already left us and ascended to Heaven but having his body was a physical reminder of our son.  Touching him and smelling him was a constant stimulation to our senses.  “Seeing” is “believing” and without seeing him or touching him we would soon have to rely on our memories and have to face reality…our son is gone, he is no longer here with us on earth.  I know that the Lord is taking care of him and he is happy to be in Heaven but that doesn’t cure the hurt or take away the pain of not having your son to hold in your arms.  Immediately prior to us leaving the hospital Bill came to visit us one last time.  He is amazing and seems to appear at the right times.  We needed him then and we needed a prayer.  After a wonderful prayer of strength and healing, and a prayer for the cremation, Zach and I decided to drive Jaston to Miller funeral home where he was to be cremated.  We couldn’t handle the thought of someone else driving him around Sioux Falls and we couldn’t handle the thought of leaving him alone.  When we arrived at the funeral home I burst into tears. 

I can’t believe this is happening.  There is nothing I can do to bring Jaston back to life.  Lord I am going to need your guidance, I need strength to leave Jaston here.  I am going to need strength to leave this place without my son.  Lord please help me. 

We entered into the funeral home around 1800.  We had talked with one of the funeral directors earlier in the day and we were told that Jaston would be cremated upon arrival or shortly thereafter.  This was not the case.  The funeral director stated that they were making an exception for us and that they had already started another cremation and it probably wouldn’t be until around midnight that they would start the process.

Are you kidding me and what did you just say? You’ve made an exception for us! Seriously! This is my son.  This is not just some baby or dead body this is my son!

 I turned to Zach and my mom and said I can’t leave him here alone until midnight.  This is not going to work for me.  I would have never left the hospital and brought him here if it wasn’t going to happen right away.  I then asked, well told, the funeral director that I was going to stay with him until then.  He responded and said that I could not and that they lock all the doors and secure the building at 2100.  I broke down and began crying more.  I needed a room, somewhere to hold my son and think about the events that were soon to take place.  The funeral director gave us some time in a “meeting” room and I discussed my fears and concerns with Zach and my mom.  I was afraid that some “pothead” was going to throw Jaston into an oven and have no care that he is a son, a brother, or a child.  I mean who would work at midnight and cremate people.  Turns out people pass away at all hours of the day and this is a 24 hour business.  I also feared that they were going to leave him in a cold room when I had spent the last 24 plus hours keeping him warm.  (I did not want him to get cold because I did not want that memory of him. I’d say I did an awesome job too because between keeping him next to my chest and having him wrapped in the blankets made for him he didn’t get cold.)  I decided that the best way for me to settle my fears was to express them to the funeral director, which I did.  He showed me a picture of the man that would be cremating Jaston, and nope he wasn’t a “pothead.”  He also prepared a “bed” in a viewing room for Jaston so he wasn’t going to be in a cold room (one I envisioned as a refrigerator or somewhere that autopsies were performed).  After I settled my fears, my mom, Zach and I went to the “final” place we would physically see and feel Jaston.  We all held him one last time.  I showered him in kisses and held him close, cheek to cheek, with his face pressed against my neck.  He was still wrapped in the two blankets made for him.  He had the diaper, outfit, and hat on that he had worn briefly at the hospital.  These items I wanted, I needed, so his dad chose what he was to be cremated in: two different blankets and a hat that my sister had knitted him along with another hat to keep the knitted hat on (his head was much bigger, well he was much bigger than anyone had projected, so the hat she knitted fit the top of Jaston’s sweet little head but didn’t fit it completely).  We exchanged his outfit and blanket for the new ones Zach had chosen.  Then my mom, who is full of last minute ideas, had this great idea of writing on the blanket we were cremating him in.  We made a few phone calls and wrote messages on it.  These messages were from Zach and I, Tara, Landen, and Anberlin, his grandmas and grandpas, and his aunts and uncles. 

Thank you for this idea mom. 


After we wrote on the blanket, we “tucked” him in as my mom puts it.  Zach and I then performed the nightly bedtime rituals that all our children are accustomed to (reciting The Lord’s Prayer, Now I Lay Me Down to Sleep, and singing “Rock-a-bye baby, and Twinkle, Twinkle Little Star).  Then that time came when we had to leave.  Zach and I gave Jaston his final kisses; we held hands tightly and walked out of that room, closing the door behind us and opening a new door to grief and a never-ending search for our son. 

We arrived home around 8:05pm.  Entering through those doors empty handed, without the child I just gave birth to was painful.  I wanted to hug my other three children but I also wanted to curl up in a ball on my bed and weep.  I wanted to run back to the funeral home and kiss Jaston one more time, I wanted to smell him one more time;  I wanted to press him against my body just one more time but I couldn’t.  I had to keep telling myself that Jaston is gone and he has been for awhile; he has been enjoying the everlasting love of Christ and looking down on us for the last 24 hours, he knows that I love him and there was nothing I could do to change the situation.  The only thing I can do now is grieve, mourn the loss of my son, pray, and embrace the time I was able to have with him. 

            My sister did an amazing job watching Tara, Landen, and Anberlin all day.  She cooked an amazing meal and the house was clean (something I don’t even get accomplished when I’m home all day with the kiddos).  For someone who does not have children of her own, she handled them perfectly.  She had them create a beautiful banner for us as well and had it hanging on the fireplace. 

You all created mommy and daddy a wonderful present, something we will treasure and hold dear for our lifetime.

I called the funeral home around 9:15 to ask if they would give us a call when they began the cremation because I wanted to light a candle for Jaston.  Mike (the funeral director cremating Jaston) stated that the process had already begun.  I asked what time it started and he said 8:05pm.  Tears began to roll down my face.

I didn’t have to leave the funeral home.  Why did I leave?  I could have held Jaston until it was time to cremate him.  He could have never been left alone.  I could have stayed with him until that very moment he couldn’t be held any longer.  I am so sorry Jaston that I left you.  Please forgive me.  I didn’t get a candle lit either. 

I immediately lit two candles (LED candles so they can continually stay lit): one that is in a holder hanging on a wall in our entryway that is surrounded by 3 “angels” and another that I placed in front of the first picture Zach and I received of us together holding Jaston.  I kept this candle lit until the morning of September 25th.  I attempted to turn it off on the 24th but I just wasn’t ready yet.  This candle I plan on transferring Jaston’s footprints to.  I now light this candle at dusk and put it above my bed in the middle of the window and turn it off when the sun comes up to greet us in the morning.  After catching my breath from crying, my mom and I had a conversation about how the cremation process was already half over and I didn’t need to stress over it.  I then came to the realization that Jaston hadn’t been left alone very long.  It was only 30 minutes versus the couple hours it could have been.  We also realized that Jaston’s cremation was started around the same time that we arrived home.  Something tells me that the Lord was surely watching over us tonight and waited for us to arrive home safely before the process started.  He also knew how hard it was for me to leave Jaston there and how I despised the idea of him being “alone” for hours without me so He took care of all that. 

Thank you Lord for understanding my concerns and continuing to care for my family and I.  Thank you for your continued guidance and holding our hands throughout the last 40 hours.  I know the road will be long and winding ahead of us and I ask that you will continue to hold our hands and help us to lean on Your Word and live out Your Will. Thank you for Jaston’s life and the life you have given us through him, Amen.

Finding comfort and understanding through these muddy waters has been a challenge and will take time.  It will take time to heal.  I don’t think I will ever fully heal from losing a child but my only choice now is to manage my pain and confront my emotions.  I need to be honest with myself and honest with others.  I need to face reality and rejoice in praise.  Until I can find other means of comfort I will cling on to Jaston’s blanket that is wrapped around his knitted blanket, his outfit, his hat, and his teddy bear.  I will continue to smell the inside of his hat throughout the day.  I will attempt to breathe in every molecule of scent, hoping that if I inhale deep enough and long enough the scent will permanently be fixed in my nose.  I approach his “bundle” every time with a racing heart because I anticipate that the scent won’t be there the next time I go to smell it.  I don’t know what I will do when the smell goes away but for now I will keep on smelling it as often as I can and hope that the day it disappears is far far away.  I also snuggle up with this blanket when I sleep at night.  I am devastated that I cannot have my son here to hold and this is the closest thing I will get to cradling him in my arms but it will do. 

Devotional on Jaston’s birthday from Jesus Calling by Sarah Young:

TRY TO SEE THINGS more and more from My perspective. Let the Light of My Presence so fully fill your mind that you view the world through Me. When little things don’t go as you had hoped (say like starting out the day assuming my doctor’s were not going to be around), look to Me lightheartedly and say, “Oh, well.”  This simple discipline can protect you from being burdened with an accumulation of petty cares and frustrations.  If you practice this diligently, you will make a life-changing discovery: You realize that most of the things that worry you are not important.  If you shrug them off immediately and return your focus to Me, you will walk through your days with lighter steps and a joyful heart.   When serious problems come your way (death of my son), you will have more reserves for dealing with them.  You will not have squandered your energy on petty problems.  You may even reach the point where you can agree with the apostle Paul that all your troubles are light and momentary, compared with the eternal glory being achieved by them.

Proverbs 20:24; 2 Corinthians 4:17-18

Devotional on day of cremation from Jesus Calling by Sarah Young:

WAIT QUIETLY IN MY PRESENCE while My thoughts form silently in the depths of your being.  Do not try to rush this process, because hurry keeps your heart earthbound.  I am the Creator of the entire universe, yet I choose to make My humble home in your heart.  It is there where you know Me most intimately; it is there where I speak to you in holy whispers.  Ask My Spirit to quiet your mind so that you can hear My still, small voice within you.  I am speaking to you continually; words of Life…Peace…Love.  Tune your heart to receive these messages of abundant blessing.  Lay your requests before Me and wait in expectation. If only I had read this prior to entering the funeral home or at the start of the day, instead I read it at the end.

1 Kings 19:12 (NKJV); Psalm 5:3

Thank you to all those involved in making Jaston's day special and memorable.  Thank you for sharing all the tears, laughter, joy, happiness, love and prayer that filled this day:

Jaston - the little man and messenger boy
Zach - dad/husband
My mom (Reva)
my sister (Monica)
Robin (family and friend, photographer)
Natalie (family and friend, photographer)
Aunt Sherri
Cousin Heather
Brother Landen
Sister Tara
Sister Anberlin
Chaplain Bill
Palliative Care team: Dr. Fenton and Pam
Michelle - child life specialist
Nurses Michelle, Abby, April, and Char
Dr. Cole - OB-GYN
Dr. Hermanson - OB-GYN
Dr. Lun - anesthesiologist
Dr. Reuter - neonatologist
Diane & Dick - grandparents
Grandpa Todd
and many more that were lifting us up in prayer throughout the day


Wednesday, September 19, 2012

Last night

Another day is done....gone. Another day I was privileged to feel my son bounce around inside his "womb."  The last night before I meet this little boy.  The last night I will feel his slightest movements, his hiccups, his kicks inside of me.  We are scheduled to be induced in the morning at 645am.  I know he can not "live" inside of me forever, but would not mind if he did.  He will forever be in my heart but that is not the same.  I don't even know what to say anymore.  I have so many emotions, so many thoughts.  I have felt no guilt in the decisions I have made thus far and am now starting to feel lost and helpless.  As I sit here I can't help but tear up for I have no idea what the Lord has planned for me, for my family, for this unborn angel.  Is this fair? What is fair?  The love I have for Jaston, is that enough. I hope and pray he understands how much I love him..how much his family loves him.  I hope and pray the Lord will continue to provide me, my family, and my friends with the strength we need to get through the next minutes, hours, days, weeks.  Lord, I ask you to guide me in the decisions to be made, help me to make decisions that are selfless and not based on my fear of letting go.  Lord please provide the answers for me and please don't leave me.  I need you and can't do this without you.  Please be there for Jaston and help him to enter into this world unharmed and pain free.  Allow us to meet him, smell him, kiss his cheeks, and tell him how much we love him before he enters into his final rest.  We want the opportunity for him to meet his brother and sisters whom have loved him oh so much.  Please give them the opportunity to meet their special little brother alive.  The pain of what is to come seems unbearable and I ask that you will help ease that pain.  What is to be done will be done and I have no control over that.  I have fallen to my knees, begging for understanding, begging for your guidance.  I'm scared and need your hand to cradle my heart, please hold us tonight and help us to see Your light through all of what is to come, Amen.

Saturday, September 15, 2012

The story of our son

Wow. Where has the time gone? What an amazing, emotionally draining, faithfully inspiring pregnancy this has been.  For those of you new to my life and those who I’ve had the pleasure of knowing for years, my hope for this blog is an attempt for me to answer questions, mentally vent, and grieve.  I have put this off for months and wish I hadn’t.  I don’t know what I was waiting for….possibly to wake up from what seems like a never ending rollercoaster ride of good dreams and nightmares.  Well, no more, no longer can I procrastinate as our little man is due to be born on or around September 17th.  This entry may be quite lengthy but I don’t want to leave out any details and, if I do, hopefully the answers will come out later.  Let me begin by saying thank you for taking the time to read my family’s story and the many prayers that have been said for us.  I truly believe that through faith and prayer we have been able to cope with this challenging journey.  Many of you may know this already but I am no English major nor do I enjoy writing.  I enjoy real-life, face-to-face conversations with people, so this blog may not be the most writer/reader friendly.  So here I go, bringing you up to date from the beginning.
          It’s hard to believe that it’s been 6 months since this journey began (well 9ish, technically, if you count from the beginning of conception).  We were excited to learn in January that we were expecting our 4th child.  What better time to have another child (note a hint of sarcasm).  I mean we just sold our first home, we’re living with my in-laws, and in the process of either building or buying a new home.  All that aside, the joys of having another child with my wonderful husband, Zach, were pleasantly filling up my heart and I started to plan for this newest addition.  Yes, I am a big planner and person who, at every opportunity, tries to control each and every situation.  That said, this pregnancy has been a lesson in patience and surrender.  I have learned that each situation cannot be controlled and that there is One in control of everything and has the ultimate power to change your perception, feelings, and outlook on life.  I may not be able to control what is happening or about to happen but I do have the power to control how I perceive the information given to me.  I have a choice to either be mad, angry, and fearful or find blessings in the time I do have with our son and the opportunity to plan for the events on the day of his arrival and potentially him coming home for some time.  Many families are only given seconds to make the decisions that I have been given 6 months to make.  Don’t take me the wrong way though there have been many times, my husband and I, felt pressured into making decisions but found that these were the times that it was most important to turn to our faith in God and pray for his guidance and strength.   In turn, we have been blessed with time and peace with the decisions we have made.  And so I continue with our blessing’s story.
                On January 17th, 2012 I got to see the first sneak peak of our baby.  I have had miscarriages in the past so to determine dates and viability I had an early ultrasound.  At this point my husband was working for a new company and had insurance with an unfamiliar hospital where I had to meet with a new physician.  This made me very uncomfortable as I had always doctored with the prior two pregnancies and miscarriages with a physician at the same organization I worked at.  I gave it a try but was not convinced that this was the place I wanted to continue care or deliver my child.  I was able to obtain an individual health insurance plan through my job and began to doctor with my amazing OB-GYN and received another sneak peak of this little one on January 23rd, 2012, confirmed I was 6 weeks pregnant and was able to hear the heartbeat as well, which is always rewarding and relieving.  I did not have another appointment until March and chose to have first trimester screening performed.  I figured why not, insurance would cover the ultrasound and I’d get to see my baby again.  Zach and I did not have any increased risk factors for genetic complications but in a way wanted to prepare for as much as we could with having a fourth child.  We assumed everything would be fine, as we have 3 healthy, beautiful children and their pregnancies were uneventful and could be classified as “textbook” pregnancies.  March 12, 2012 (13 weeks and 0days) was my ultrasound.  Unfortunately my youngest daughter, Anberlin, was sick and Zach had to stay home with her and Landen.  I decided that this would be a great opportunity for my oldest daughter, Tara, to join me in this experience and go with to the ultrasound.  My appointment was at 330 and the imaging began at 345.  We first met with a genetic counselor who explained what they would be looking for and measuring in the ultrasound images.  He shows you three different pictures of fetuses with three different sizes of nuchal thicknesses.  The nuchal thickness is a measurement that looks at the nuchal fold (area behind the fetus’s neck) and suggests increased or decreased risks of genetic/chromosome abnormalities.  He showed me a picture of normal (nuchal measures less than 3mm) slightly abnormal (measures 3-4mm)-which suggests an increase risk of a trisomy (chromosome) abnormality, and markedly abnormal (measuring greater than 10mm)-suggesting an increased risk of heart/chromosome/severe anomalies, and these fetuses tend to have poor outcomes if they do survive.  He told me not to worry about the greater than 10mm though because this is very rare.  After listening to his discussion we proceeded on with the ultrasound.  With my daughter by my side the ultrasound tech pointed out the head, limbs, and heart.  You know they are unable to give any information about anything they may see that is abnormal so I just asked many questions throughout; knowing that, the way she answered would give me some information in regards to the baby.  I noticed a large ring around the baby’s head and asked her what that was.  It appeared to look like a halo.  She said that is what we are looking for to measure.  Well, I immediately knew that this was large and definitely not within a normal range.  The rest of the ultrasound was a blur as I began to try and process everything the information the genetic counselor had given me, what did this mean again? Was this fatal?  I took a deep breath and tried to relax.  The ultrasound tech finished her images and left to go get the perinatologist (Dr. Boyle) who needed to discuss the findings with me.  As I waited for the doctor I called Zach and started to tear up.  Tara, at this point, began to look worried.  I tried to catch my breath and explain that something might be wrong to Zach but I didn’t know what.  Then Dr. Boyle entered the room so I got off the phone.  He began to explain to me that he was very concerned as the nuchal thickness measured greater than 10mm and was 10-13mm.  He said this could mean a few things: 1) A girl with Turner syndrome (missing all or part of an x chromosome) 2) Heart defect 3) Some other chromosome abnormality or 4) Normal.  He continued to say that if it is Turners only 1% of these fetuses survive to even deliver and that this is the number one cause of miscarriage.  He also said that because of the size of the nuchal measurement I am at a very high risk of miscarriage and the outcome is very poor.  I was devastated and couldn’t stop crying.  Another miscarriage, possibly a heart defect, maybe normal, I had no idea what to say or do.  Tara began to hold my hand and ask many questions too….was the baby going to die, what’s a miscarriage, what’s a heart defect.  I don’t even recall how I answered her.  At this point Dr. Boyle offered a test called CVS sampling (they insert a small instrument through the cervix and obtain a small sample of placenta and grow out DNA cells to analyze). This test helps to determine if the increased nuchal thickness is due to a chromosome abnormality.  He stated that I have until 13weeks and 6days to decide if I want the testing done but he could do it then if I chose.  I decided to wait because I hadn’t even processed the information yet and I wanted to talk things over with my husband.  By the time this appointment was done it was 530.  I didn’t think it was safe to drive so I went to the NICU (where I work) and went to my coordinators office and cried until I could regain my breath.  I then drove home and had a brief conversation with Tara in the car.  I told her that this situation was all up to God and that we would just have to wait and pray about it and that if God wanted the baby in Heaven then that would be okay.  She looked at me and said “well I hope he makes up his mind soon” and all I could say was “me too.”
                When we got home I tried to explain to Zach what was going on.  I explained to him the CVS sampling procedure and we decided not to have this done.  My reasoning was if the baby is having trouble already and also at an increased risk of miscarriage I didn’t want to do anything to further increase that risk.  I couldn’t see how obtaining a small piece of placenta couldn’t harm the baby, especially if it’s a heart defect; wouldn’t the baby need all the placenta it could get?  During this discussion with Zach, Tara must have mentioned something to Landen (he’s 4) about the appointment because he came up to me and said “the babies going to die because he has an owie in his brain and a hole in his heart” I told him “we don’t know that yet, but maybe.”  Hearing these words are hard but I just had to remind myself that he is 4 and doesn’t quite understand like we do.  And so the research began.  I began to search the internet, blogs, books, anything for answers.  What is Turner syndrome, has anyone else had this experience before, what percentage of large nuchal thickness end in miscarriage, and on and on.  I eventually got so tired of trying to find the answers that I just turned to my devotional for answers.  One of the first entries I read said:
Let me help you through this day. The challenges you face are far too great for you to handle alone.  You are keenly aware of your helplessness in the scheme of events you face.  This awareness opens up a choice: to doggedly go it alone or to walk with Me in humble steps of dependence.  Actually, this choice is continually before you, but difficulties highlight the decision-making process.  So consider it all joy whenever you are enveloped in various trials.  These are the various gifts from Me, reminding you to rely on Me alone.”  
How appropriate for this situation.  It is so amazing how God truly does speak to you and know what we need and when.
                My next appointment was at 15 weeks and 1 day on March 27th.  This appointment we learned that possibly we had a little boy!!! How exciting! And he has a strong heart beat. Does this mean that Turner’s syndrome is no longer a possibility?  Does this mean his heart is okay? Well, not exactly I guess. It still could be a boy with some cells missing the Y chromosome and a heart defect is still a big possibility. Great, so still no answers.  The nuchal thickness was measured again and appeared to be unchanged, still measured around 13mm.  Dr. Boyle at this point began to classify the nuchal thickness as a cystic hygroma and gave us the option of having an amniocentesis performed.  I still did not want to increase the chance of miscarriage and really struggled if I should get one done or not.  My husband and mom were at this appointment and helped me to make the decision, well mostly my mom.  Zach said he would go along with whatever decision I felt was best.  My mom though, she said we needed some kind of answers so we knew what to look forward to and said “get one, and if something happens, blame me.” I could never blame my mom but I thank her for supporting us during this pregnancy and helping me to make some decisions.  We had the amniocentesis performed and anxiously waited for the results.  The results came prior to our next scheduled appointment…NORMAL and BOY! What a relief, so maybe this is a heart defect or everything is “normal” (I put this in quotations because what really is normal, God created this little boy, and I find it hard to believe that he wouldn’t consider him “normal”).  We had the privilege of naming our son now because we knew what gender we were having.  I searched for names and determined that I didn’t really like any names out there so I made up a special unique name for him.  I chose Jaston, a mix between Jackson, Justin, Jason.  I also picked out the middle name to be John: gracious gift of God or God is gracious depending on where you search.  A great strong biblical name well suited for this little boy.  Our next ultrasound was April 11th, 2011 (17weeks and 2days).  At this appointment the hygroma appeared to have enlarged.  We also saw that our little boy possibly had clubbed feet and possibly clubbed hands.  He also appeared smaller than other fetuses his age.  But because I was only 17 weeks they couldn’t take measurements to determine this observation.  I had to wait for a more “complete” ultrasound to be done to really analyze what was going on.  Dr. Boyle was concerned with the possible findings and told us to prepare for a late miscarriage.  Something we are used to hearing by now but the pain and hurt of these words never fades.  Prayer has become our drug and has helped us find light in what seems like a never ending dark tunnel.  Because of what they think they may be seeing on ultrasound we met with the genetic counselor again and decided to have a CGH array (comparative genomic hybridization) performed on the amniotic cells they have grown.  The counselor explained this test like the following: the original study performed on the amniocentesis looked at the “big” chromosomes.  View a chromosome being like a textbook: does this little boy have all the textbooks: YES, an array is looking for missing pages in the textbook, and there is an even further broken down study of chromosomes looking at certain genetic conditions.  These tests look for missing periods or uncrossed t’s or undotted I’s on the pages.  The array came back normal as well.  So still no answers or identification of what is going on.
The next complete ultrasound took place on April 23rd (19weeks 0days).  This day we confirmed his growth to be smaller than normal.  He is now considered IUGR, intrauterine growth restricted, measuring the same as a 15-16week fetus at 19weeks.  He does have bilateral clubbed feet and is possibly missing the radius in one and/or possibly both arms, but again because of his size they cannot confirm this yet.  His hygroma appears the same, well at least hasn’t gotten any larger.  Dr. Boyle says the hygroma probably won’t go away but he will grow into it.  His heart appears normal, but because of size again they are unable to really determine.  They also looked at his brain/skull which, go figure, because of size they are really unable to see if there is any abnormality there either.  Because of everything he has seen develop with Jaston, Dr. Boyle feels this is some genetic condition but he is unsure of which one or what’s caused it.  Jaston’s symptoms aren’t following any known condition or syndrome.  He doesn’t know if this is a new mutation that will affect future children or our children’s children.  He feels that with time and after delivery we may get more answers after seeing him and having a geneticists examine him.  So we wait for him to grow and again wait for the next ultrasound.
May 9th (21weeks 2days) we confirmed bilateral missing radii, bilateral clubbed feet, some kind of brain anomaly, and IUGR.  Dr. Boyle feels the prognosis is poor and we are highly likely to experience the lose of our son in the coming weeks.  We wait and pray for growth and have another ultrasound on May 23rd (23weeks 2days).  This day we see he hasn’t really grown and when we look at the growth chart it appears he has reached a plateau of growth.  He weighs 10 ounces and he has microcephaly (a condition where the head is severely smaller than average person for that age) it measures around the same size as a 17 week fetus and his body is measuring that of a 19week fetus.  We are given the option of inducing at this time if we want the chance of holding him alive.  Because of the brain malformation (it could be a cyst, it could be a broken vessel during the embryonic stage that didn’t seal and kept bleeding, or it could be an empty cavity where the cerebrum failed to develop) and the markedly stunted growth, Dr. Boyle feels we have limited time with him.  What a decision to make.  Seriously, you want me to deliver because you think if I don’t he will pass away in the womb. Well yeah was my initial reaction.  Yes I want to hold him alive.  Let’s schedule for this.  I don’t want to have to go through labor if he isn’t alive.  “How long doctor, with your experience in seeing this slowed growth, do you think we have if we don’t decide today?”  “I’m afraid maybe four weeks” was his response.  So we scheduled for an induction to happen in 2 weeks.  I figured we had been having ultrasounds every 2 weeks so we could wait another 2 weeks, have another ultrasound prior to delivering (secretly hoping everyone was wrong, and at this ultrasound he would be “normal).  And in two weeks that was halfway between now and when the doctor feels he will no longer be living anyway.  We went home and began to make phone calls to our parents, sisters, and brothers so they could schedule to be here for the delivery.  My husband and I didn’t talk very much that night, we just sat on the couch after the kids were in bed and cried and held each other close.  The thing with having three other kids at home during all this is that you don’t really get a chance to process information or have lengthy discussions about what’s going on.  You are really forced to continue the routines they are so familiar with and maintain some normalcy despite the desires to just break down and cry and hide in a dark place somewhere.  This isn’t an option nor will it ever be an option for those who have children and are struggling with a life “crisis.” So you find comfort in someone, something much greater than you…your Creator.  You look to the Lord for strength and guidance.  You confide in Him for answers and wisdom.  You look to him for peace and serenity.  You surrender to Him and let him consume your heart.  That said, a few days after we had made the decision to be induced I was in the shower with tears rolling down my cheek.  I had these awful feelings, feelings of guilt, a feeling of lose and I hadn’t even “lost” anything yet.  I eventually found myself sitting upright in the corner of the shower, crying with my knees tucked tight up to my chest, asking the Lord, why?  What do you want me to do? Is an induction what you want me to do, or is this my way of trying to control the situation and trying to alleviate the uncertainty that the future holds?  I am begging you to give me some kind of answer?  Little did I realize that was the answer…me questioning my decision to be induced.  I wouldn’t have these feelings of guilt if it were the right decision.  Godly decisions don’t allow you to feel guilt.  It was then that I realized I needed to cancel the induction.  My best friend, whom I had many conversations with throughout the pregnancy, happened to call that next morning.  She was having some of her own thoughts and feelings in regards to the induction and felt she needed to call and share them with me.  She wanted me to know that she was supportive of any decision I made, but wanted me to make sure that I wasn’t having any feelings of regret.  She wanted to make sure that I felt comfortable with the time I had with Jaston and was ready to say good-bye.  She is such an amazing person and I am thankful for this conversation, otherwise I wouldn’t have mentioned it on here.  Out of this conversation I was able to confirm my thoughts that when the Lord is ready for Jaston he will call him home.  It is not up to me to make that decision.  I have been blessed with a beautiful little boy, an angel who has chosen Zach and I as his parents and Tara, Landen, and Anberlin as his siblings.  The good Lord has allowed me to be the temporary home for growing Jaston.  He trusts us and believes, that out of all the people in the world, we were the best suited family for him to know.  And though our time may be short with Jaston, we have already learned so much and grown faithfully because of him.  In time it will be interesting to see how much of an impact he has on our other children as well.  An influential and respected mentor recently told me “you have given Jaston life, but he has given you eternal life” and I truly do believe this.  I have a long way to go in my walk with Christ and that journey will never end but because of Jaston the door to eternal happiness and life in Heaven has opened to me.  For that reason Jaston, I am so thankful that you have blessed me with your life and the pleasure you have given me in feeling and watching you grow.  Even if your time on Earth is shortened, I will make it memorable and cherish every second we have together.  You will never leave my mind and will always have a special place dedicated to you in my heart.  I do understand that God gave us the means of making decisions but I also know that he will only provide us with what we can handle.  We will bend throughout life but we will not break, as long as we see Him as our rock and our foundation.  So though I feel at times I am going to break I remember that the Lord is always by my side and walking me through every good and bad time.  He is there to support me and hold my hand.  He is there to carry me when I fall and He is there to straighten me when I bend.
Now where was I…oh yes, the two week mark when I was thinking about being induced but was planning another ultrasound.  June 6th (25weeks 2days) Jaston grew!!! God is amazing.  Another sign that Jaston is in the hands of a wonderful Creator.  He now weighs 1 pound 2 ounces.  That’s 8 ounces in 2 weeks. Yes, for the average person this is really no gain but for me that is huge.  Especially working with all those micro-preemies in the NICU every ounce makes a difference; well every gram makes a difference.  Today we found out that Jaston possibly has a heart defect too.  One of the major organs that didn’t seem to be affected by whatever is going on now seems to have a problem.  At least he has functioning kidneys and we can see him suck and swallow on ultrasound.  He also doesn’t seem to have a problem with showing off his boy parts either, which I guess we’ve known that since 15 weeks because that has been the best and easiest image we’ve gotten on ultrasound thus far.  We’ve tried to get 3-d images of his face but he seems to hide that pretty well.  He either buries his face in my placenta or smashes it against my uterus.  That’s fine Jaston, I will get to see your handsome little face soon enough. We are going to follow-up with pediatric cardiology for a fetal echocardiogram on June 29th to look at a more detailed view of his heart and we are also going to schedule to have an MRI done (scheduled July 2nd) to look closer at his brain.  So far he appears to have a cerebellum (the little brain responsible for motor control), a thalamus (responsible for sending sensory and motor signals to the cerebral cortex (the part he appears not to have) and plays a role in regulating consciousness, sleep, and alertness), and brainstem (an important part of the brain that helps regulate sleep-cycles, consciousness, breathing, and heart function).  Dr. Boyle is leaning more towards a cyst that developed in Jaston’s brain.  He also now thinks that Jaston will continue to grow and deliver closer to term.  He has continued to support our decision to continue the pregnancy and has never made us feel that the decisions we have made are wrong.  He has continued to give us options but has allowed US to make the decisions and hasn’t persuaded us either way.  He has been a great physician and although he doesn’t have all the answers (which physicians never do) he has only given us options based on the information he has through ultrasound images and he has been very honest with us on what his experience with this situation has and hasn’t been.  He also has an amazing nurse team that has been encouraging and supportive.  So much so that it makes me want to work with them in the maternal-fetal medicine clinic, hmmmmm…no I love the NICU babies way too much. 
June 28th, 2011 (28weeks 3 days) Jaston is now 1 pound 6 ounces.  Growing but slowly.  He gained 4 ounces in 3 weeks.  And if you all remember from earlier in this post Jaston wasn’t expected to live past approximately 27weeks and now he is 28 weeks.  Hooray! I know that when I was 25 weeks Dr. Boyle had changed his perception and felt Jaston would continue to grow and deliver nearer to term but I just wanted to point out how much God truly works in Jaston’s and my life.  Without trusting in Him, Jaston would have been delivered by now and we would have had to say our good-byes all too soon.  At this ultrasound the technician kept commenting on all the hair Jaston has.  Interesting to me because Anberlin I felt had a lot of hair when she was born but no one ever pointed out her hair on ultrasound.  I am excited to see just how much hair he has when he is born because on ultrasound you can see it waving around in the amniotic fluid and I wonder what color it will be.
June 29th we had our fetal echocardiogram.  Dr. Nofil Arrain is the pediatric cardiologist we met with.  I am familiar with him, as he visits and sees babies in our NICU.  His echo tech. is an amazing woman herself and has recently experienced a tragedy.  She lost her infant son due to a chromosome abnormality.  I am thankful she performed the echocardiogram because we were able to connect and talk and exchange contact information.  She is going to be someone I will contact in the future for sure.  Dr. Arrain reviewed the ultrasound images and told us that he believes that Jaston has a bicuspid aortic valve (the is a valve in the heart that usually has 3 leaflets that helps push blood out of the heart to the body but in Jaston’s case it only has 2 leaflets).  Because there is only two leaflets the opening the blood goes through is slightly narrowed and when this happens it can sometime cause the left side of the heart to slow and possibly stop its growth.  So far it appears that his left side of his heart might be very mildly affected but Dr. Arrain stated that if nothing else were going on this would just be something he would monitor after deliver because many adults have bicuspid aortic valves and don’t show symptoms til later on in life like around 30 years of age.  He also doesn’t feel that this heart condition will severely affect his prognosis.  So I guess this is all good news.  We have one more follow-up ultrasound prior to Jaston’s delivery to check on things to make sure that the left side of his heart doesn’t become severely affected.
July 2nd was our fetal MRI.  What a fun experience.  Not really.  I am someone who occasionally will take an ibuprofen or Tylenol and maybe an Excedrin for a headache.  With my last three kiddos I didn’t take anything but ibuprofen and Tylenol after they were delivered.  So this day I knew would be interesting for many reasons but the first was because they ask that I take Ativan immediately prior to the MRI, not for me, but more to calm Jaston done and try get him to stay still during the scan.  So if none of you have had a MRI before let me fill you in a little.  You are placed on a flat bed on your back (which for someone pregnant isn’t the most comfortable to begin with) and this bed is then slowly moved electronically into the scanning tube.  During the scan you are asked to wear headphones and you can listen to music of your choice.  Once in the tube you begin to realize just how close everything is to you and how little room you have, and for me I started thinking about how heavy the equipment could possibly be and if there was a malfunction I would probably be crushed or started on fire.  I’m not claustrophobic but this space was a little too small for comfort and the noise from the machine is a little eerie.  The best way to cope was to just close my eyes and try to engage all my senses in the music.  Now during a fetal scan they have periods throughout the procedure where a computerized lady will interrupt the music and ask you to hold your breath.  Now again for a pregnant woman this is no easy task.  Holding your breath seems like forever and you swear you are either going to pass out or suffocate.  But you try your hardest because you want the images to be the best they can be knowing that this may give the physicians some answers as to what is going on with your child.  So you cooperate and hold your breath for as long as you can when you feel your little one flip over in your belly or at least this is what happened in my case.  My thoughts were “seriously Jaston…I thought the Ativan was suppose to calm you down yet every time they ask me to hold my breath I do my part but you just move around.” I can’t help but smile and quietly laugh because this is how it goes.  Jaston will be Jaston and I’m okay with whatever he has planned.  I enjoy his movements anyway and wasn’t too thrilled at the idea of “calming” him down.  I didn’t think the Ativan had any effect, well I know it didn’t on Jaston, but when the scan was complete boy did I notice an effect on me.  I felt awful, I seriously felt like I had the flu or a hangover.  Never again well I take this medication and man I feel bad for the babies that we give this to in the NICU.  I guess that’s how it must work though, you feel so crappy that you just want to sleep, in turn “calming” you down.  Based on the images from the MRI the physicians weren’t able to make a diagnosis or confirm anything.  The results read something like large supratentorial cystic change with minimal parenchyma visualized.  This is thought most likely to represent a form of holoprosencephaly (failure of the brain to divide into two hemispheres) or possibly hydranencephaly (a condition where the cerebral hemispheres are replaced with fluid).  But again, no concrete diagnosis and possibly because Jaston moved quite a bit during the scan.  Oh well, I’ve decided that God will give us the answers when it’s the right time and that we just need to be patient and enjoy the time we have been given with Jaston.
Our next ultrasound was July 11th (30weeks and 2 days).  At this appointment Jaston weighed 1 pound 10 ounces.  He had his hands crossed in front of him so perfectly and we were able to really view what his arms look like.  To every other person this may be scary but to me this is the least of my concerns.  He is perfect in every little way and I’m happy as long as his heartbeat is still strong and he is growing.  We were able to see that he actually may have thumbs too.  Up until this point we had been told that he may not have thumbs because this is often associated with the missing radius.  The thumbs may be underdeveloped but they are possibly there.  My thoughts on this were “great, thanks for the information but he’s growing and has a strong heart and that’s all that matters now.”  One amazing and kind of creepy thing we saw today too was Jaston blinking and moving his eyes around.  This was so fun to watch.  I wonder what color eyes he will have?  I know most babies are born with what appear to be blue eyes but I do wonder this.  My children and Zach and I all have blue eyes so I assume his will probably be blue as well.  Monitoring for growth and watching for any signs that Jaston is becoming stressed are the two main concerns for me at this point, so we scheduled another ultrasound in two weeks.
July 25th (32weeks 2days) Jaston is 2 pounds 2 ounces.  He continues to open and close his eyes for us to see and he moves them from side to side.  Pretty uneventful ultrasound when it comes to new information but always worth the visit to see my little man moving around.  Because we haven’t really seen any changes we waited 4 weeks before having another ultrasound.  On August 21st (36weeks 1day) we had another ultrasound.  Jaston is 2 pounds 12 ounces and appears to be taking practice breaths on ultrasound.  What a great sight to see.  I hope this means he is preparing to breathe on his own and will breathe on his own after delivery.  This time we had a newer ultrasound tech and I wasn’t very impressed with her.  I told her that we enjoy ultrasound pictures to take home as they are potentially the only images we will have of him alive and she just kind of shrugged her shoulders and said okay I will give you a cd at the end.  Every ultrasound tech prior to her has been so wonderful and understanding and will give us an array of images but nope not her.  I don’t know why.  Maybe it’s because she is younger, newer and unfamiliar with how important her role is in helping families grieve and get through the process of coping with a difficult pregnancy and life changing event.  Needless to say I let her scan Mr. Jaston and she gave us four ultrasound images, none of which are useful because they are of nothing.  I mean they are of something but nothing a person can make out.  This appointment Dr. Boyle became concerned again.  He stated that Jaston’s bones appear soft and not well mineralized.  He thinks this may be a result of something called hypophosphatemia (low phosphorus in the blood).  He told us to prepare for the possibility of slightly more stressful labor and delivery (L& D); that Jaston’s bone structure in his skull may not be strong enough to push open my cervix so I may need to receive Pitocin to increase the intensity of my contractions to assist with opening my cervix.  He also thinks that L & D may be more stressful on Jaston as well and we should think about whether or not we want to listen to his heart rate during this time.  He stated that sometimes listening to his heart rate may cause more anxiety because he may not tolerate L & D very well but he encouraged us to not have a c-section performed in this event.  I understand why he doesn’t want this to happen and I don’t want to have a c-section either.  That is a major surgery and because I have had three uneventful vaginal deliveries in the past I should continue this way.  If I were to have a c-section this could interfere with the possibility of having vaginal births in the future and also affect the health of future pregnancies.  The thought of Jaston not surviving L & D or at least not tolerating it well and causing him added stress breaks my heart.  He has made it so far and has continued to show how strong he is that I want to see him survive L & D.  I want to see him come home with us and live with his brother and sisters.  I want him to know what life is like at home.  I want him to feel the comfort of our home.  I want to feel the comfort of him in our home.  I’m not ready for him to leave this earth and I probably won’t ever be ready but I am ready for God to shine his light on my family and me and walk us through what seems like a dark and dreadful path.  He has helped us get this far and I know he won’t leave us now.
Although our faith and the power of God have helped us cope throughout this pregnancy, there have been many other individuals walking with us.  My husband and I have been meeting with a palliative care team (Dr. Fenton and Pam) at Sanford along with a chaplain (Bill) and a child life specialist (Michelle).  These individuals have helped us to develop a birth plan (which Dr. Boyle sees as a great idea but wants us to remember to not set anything in stone until we meet little Jaston) and explain what’s going on to our children.  They have helped Zach and I to have a better understanding of what to expect and what to plan.  We also have had much support from family (especially my mom and sister, Monica(thanks for the knitted hat and diaper cover for him to wear) and friends (especially Natalie and Robin for lasting memories and maternity photos).  To those who have continued to support Zach and I throughout this process but I did not specifically mention, please don’t be offended.  I have not forgotten about you nor will I ever disregard the contributions you have made in our lives.   I thank you all for your thoughts and prayers.
                So here I am now, with Jaston defying all odds, awaiting his arrival and trying to prepare as best I can for any and everything.  I am hoping that the day will take it’s time in getting here.  I’m enjoying every moment I have with Jaston and every movement he makes.  He is so strong and I am so in love with him.  I have truly been blessed with his life.  The Lord has given me time with him and if this is all I get I will not have any regrets.  The decisions my husband and I have made have been made with the assistance and guidance from above.  Because we have leaned on God throughout this pregnancy we feel no guilt or shame in these decisions.  How blessed we are to have such an amazing God.  Some people in our situation choose to get mad and angry at Him.  I don’t believe Zach and I have done anything wrong to deserve this nor do I believe our God is a punishing God.  I believe that we were given this opportunity to draw nearer to Him and see how amazing our lives are with Him in it.  I believe that we are blessed to be chosen out of everyone in this world to be Jaston’s parents.  I also believe that because of our faith in the Father, the Son, and the Holy Spirit, this experience hasn’t been easy but it’s been manageable.  I will continue to make updates as often as possible but future posts will hopefully not be so long.  I also will be positing some of our ultrasound pictures and maternity photos, hopefully tomorrow if I’m not in labor.  Posting pictures will be the easy part; it’s the writing that takes all the time.  Thanks for reading our story and please continue to pray for us during this difficult time.