Thursday, September 27, 2012
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 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.
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...
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.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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:
Devotional on day of cremation from Jesus Calling by Sarah Young:
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
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.
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