Saturday, December 19, 2015

Happy 3 Month Birthday, Dakota! - Birth Story

 “And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”  And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” And he said to me, “It is done! I am the Alpha and the Omega, the beginning and the end.  To the thirsty I will give from the spring of the water of life without payment.”
 Revelation 21:3-6

 It is hard to believe that 3 months have passed.  Truthfully, I have experienced a bit of “mommy-guilt” that I haven’t taken the time to post Dakota’s Birth Story before now.  I wanted to get it “just right.”  I realize that pressure is self-imposed and unnecessary.  I share Dakota’s story to make sure his memory lives on, to open doors for conversation, and to tell you all that I could not get through this with out my faith.  God has written Dakota’s story better than I ever could.  He has turned tragedy into joy, mourning into dancing, and sorrow into laughter.  We know that our Lord and Savior is caring for Dakota in ways we never could.  Here is his birth story:

Dakota’s Birth Story: A Timeline of Events

Friday, September 18, 2015
8:30am: Before Jaden went to school this morning, we made sure to take time to snap our 36-Week family photo.  Little did we know what the next 36 hours would bring.

3:30pm: We arrived at Miami Children’s Museum to take advantage of the Free 3rd Friday Event.  Jaden had a blast, and we are thankful for that special day with him.  I spent as much time sitting as I could because I was having Braxton Hicks contractions through out the day.  I loved being there to see his face, even if Eddie was the one to actually play with him and chase him around.




6:30pm: On our way out of the museum doors, we received a phone call from some good friends from NC. They had called to pray over us, and we were finally able to connect. It was so comforting to hear their prayers and words of encouragement.

7:30 pm: We went to Target to buy a birthday gift for a party the next day.  While in Target, I felt my first painful contractions. I told Eddie we needed to go home so I could get in bed because my “Braxton Hicks” contractions were getting painful.

8:07pm:  We got in the car and I started timing my contractions. They came every 2 minutes for the next 15 minutes as Eddie was driving us the 45-minute drive home.

8:30pm:  That made Eddie nervous, so he called our good friend Megan who has experience as a midwife.  She recommended I drink some water and call her if they continue once we are home.  She also offered to be available if we need to drop of Jaden.

9:00pm: I laid down in bed while Eddie put Jaden to bed, and then he started packing our bag for the hospital.  I had written a list of what to pack, but I hadn’t started packing at all.  He had to do it all!  I continued to time my contractions.  They were coming every 4-15 minutes.  They were very sporadic, and not getting any stronger or weaker.  Once he finished packing our bags, Eddie asked what else I needed him to do.  I thought of the “Birth Plan” that I had written/copied from the internet.  It was 3 pages long and needed editing.  I had it on my “To Do” list for weeks: “go over birth plan with Eddie.”  I was planning on taking it to my next pre-natal appointment to review it with my doctor.  We took a few minutes to read it together and discuss each point.  We agreed on what to keep and what to scratch off.  When we finished, he asked if I wanted him to pull it up on my computer and edit it.  The fact that we still didn’t have a funeral home picked out to add to the final draft drove me to say, “No” and in my head I was thinking: “I will finish it later after we pick out a funeral home.”  Can you say: CONTROL ISSUES!?! 

11:00pm: I gave into sleep and quit timing the contractions.  I slept restlessly for about 2 hours while my contractions continued and kept waking me up.

Saturday, September 19, 2015
1:00am: I woke up to Eddie just finishing cleaning up the bathroom after cutting his hair and showering.  I told him that I think we need to go to the hospital.  He called my doctor and got a call back from someone (he doesn’t remember who) telling us that we should go to the hospital.  He called our friend Alvaro to ask him to pick up Jaden and bring him to Megan’s house.  He started packing the car.

1:30am: We headed to the hospital and called Eddie’s aunt on our way.  She is a doula, and had expressed willingness to be by our side through this.  His aunt and uncle headed out the door to meet us there.

2:00am: We arrived at the hospital and realized that we didn’t know where to go.  We had been meaning to visit, but it hadn’t happened yet.  So we went to the Emergency Room door.  A nurse took me in a wheel chair to Labor and Delivery, and they instructed Eddie where to go park the car.

2:15am: They put me in a bed in triage and hooked me up to a fetal monitor and monitored my contractions.  They told me that my doctor was unavailable until Monday, and that a different doctor was covering for him.  I had never even asked my doctor what to do if he wasn’t available.  I had never even heard of this on-call doctor!  And now the nurses were making faces when they said his name.  It did not give me a good feeling about him.

2:45am: The nurses told me I was dehydrated, and gave me a pitcher of water and instructed me to drink it all.  I admitted that I had not drank much all day the previous day because we were at the museum and I just didn’t drink enough water.

3:00am: A familiar face poked her head around the curtain.  It was a woman from our church who works in Labor and Delivery and happened to see my name on the patient list. She was so encouraging and calming, and even helpful as I got nauseous while she was visiting. Eventually they had to hook me up to an IV to get fluids in me try to re-hydrate me.  The nurse had checked my dilation when I arrived, and I was only 2 cm.  They checked an hour later and I was 2.5cm-3cm.  They checked again an hour later and I was still the same 2.5cm-3cm.  Since I was not progressing quickly, my contractions were not getting closer together, and they were not increasing in intensity, they decided that I could go home if I wanted to.  I was uncomfortable and would rather be at home in my own bed anyway.  We didn't think Dakota was coming today.

6:00am: After fluids and being encouraged to drink more water, they sent me home with the theory that my contractions were due to my dehydration and that they would subside if that was the case.   If not, they would continue and intensify and I would know that was true labor.  The “goal” was for me to go home and come back sometime after Monday when my doctor was available.  They also gave me the following instructions:  When your contractions are 2-3 minutes apart, lasting 1 minute long, for an hour, then come to the hospital because that is real labor.  I struggled to walk to the elevator and out to the car, as my contractions continued. 

6:30am: I was back in my own bed and continuing to time my contractions.  They were intense, but not lasting very long.  I tried to sleep while Eddie snoozed next to me.  He hadn’t slept all night, so I really wanted him to sleep.

8:00am: After 1 ½ hours of trying to sleep but having contractions every 4-10 minutes, I got up and sat in a chair in the living room.  I wanted Eddie to sleep as long as he could, and I needed to make some phone calls.  I also found an app on my phone that could time my contractions and also time how long they lasted.  I set it up and proceeded to see that they were 6-8 minutes apart and lasting only 20-40 seconds… not “long enough” to be considered "real" labor. 

First, I called Megan to tell her what was going on.  I had to put the phone down after 4 minutes and get through a contraction. Then, I called my sister.  Within a 12-minute phone call, I had had 2 contractions that I had to set the phone down to get through.  She said she was going to look for a flight out today.  Then, I called another friend to let her know that I was not available to serve in the kid’s ministry on Sunday at church, but that she was welcome to come and get the bag that was prepared for the lesson.  Again, I had to put the phone down to get through the contractions.

I knew I wasn’t going to be able to go about my day as planned even though the nurse and Eddie’s aunt had told me to go about my normal routine as a could.  I was thinking that there is NO WAY I can even leave the house, let alone go do all the many things we had planned for that day: a meeting at 9:00 at church, a birthday party at 1:00, National “Talk Like a Pirate Day” at Krispy Kreme, and a staff party at 5:00.

9:30am: I decided that Megan’s suggestion to take a shower sounded good. I woke up Eddie, gave him my phone, and asked him to continue timing my contractions as I yelled to him from the shower.  Some of them were 2 minutes apart, and some were 8.  Some lasted 20 seconds, while others lasted 50 seconds.  I couldn’t imagine one lasting a whole minute! I was in labor but still not believing it.  The shower felt so good, but I was ready to lie down again.   

10:30am:  I got dressed and lay down in the bed.  No sooner than I did that, and I felt sudden pressure.  I could feel his head!!!  I told him that we needed to go to the hospital, but after three contractions in a row where I couldn’t get out of bed in between, I yelled to Eddie: “You need to call an ambulance!”  So guess who he called instead: Megan!  He put her on the phone with me and she asked me if I really wanted him to call an ambulance.   I said, “No, I want to get out of bed and get in the car, but I can’t.”  She said, “OK, if you can get up, get in the car, and go.  If not, then call an ambulance.”  That was all the motivation I needed, and I got up and slowly made my way to the car.  Eddie was frantically packing the car again, and brought it right up to the bottom of our 19 steps that I had to slowly walk down… all the while imagining one of our neighbors walking out their door to find us slowly making our way to the hospital.

10:50am:  We left for the hospital, and while Eddie was driving out of our neighborhood, suddenly he was yelling out the window, “We are going to the hospital!”  I opened my eyes to figure out who he was yelling at.  It was our friends who were going to be hosting the birthday party that Jaden was invited to later that day.  As he drove down the turnpike, Eddie asked me who he needed to call.  He called his parents, his aunt, my mom, my sister, photographer #1, photographer #2, and photographer #3.  Only photographer #3 was available, and I was shock to have needed to call all three.

As Eddie drove, he told me he only broke two laws: speeding and running a red light.  He also told me that he kept looking down at me to see if the baby’s head was coming out.  That was the longest 25 minutes of my life!

11:15am:  We arrived at the hospital, thankful that we knew where to go after our “practice run” just hours before.  Eddie wanted to come in with me, but I just knew this baby was coming soon and I didn’t want him to miss it when he had to leave to park the car.  I insisted he go park, and that I would be fine taking the elevator up to the 2nd floor. He reluctantly complied.  I exited the elevator to a waiting room full of people.  A lady said “Does she need help?” and she got up and yelled to the guard, “We need a wheelchair!”   The guard us brought one, and she wheeled me to the labor and delivery desk where I quickly signed the forms they put in my face and handed over my identification (which I knew I needed to have with me after our first go-around 9 hours before).

11:20am: She wheeled me into triage and I got into a bed.  As the nurse checked me, she yelled, “We have a complete here!”  The next thing I know, there was chaos.  I had my eyes closed and was just trying to endure the contractions.  They brought me down the hall to Labor and Delivery Room #8, and Eddie was still not there.  They moved me into another bed, and told me they were waiting for the doctor to arrive.  They shoved a few more forms in my face to sign, and introduced me to the head of the NICU team, Dr. T.

11:30am:  Eddie arrived to a flurry of activity in the room.  He set our stuff down amid the 8-10 people who were hustling and bustling around me.  As he made his way to my side, he asked, “Excuse me.  What is going on?”  The nurse replied, “ Your wife is 10cm, she is going to have this baby NOW!”  He quickly asked, “Will she have a chance to get an epidural?” In the back of my mind I knew it wasn’t likely, but I was waiting for her response with an ounce of hope.  She said, “No… it is too late.”  The Neonatologist team came in, and Eddie pulled out the edited birth plan that we never got a chance to revise and reprint.  Eddie knew it was important to me, so he sat with the doctor who was in charge of the NICU team and reviewed the 3-page birth plan that we had scratched out and edited but not re-printed.  Dr. T took the time to read it and felt that he had a good idea of what we wanted.  Looking back on that… I am in shock that he took the time to do this, just minutes before Dakota was born!

11:45am:  Once everything was ready and the doctor was in place, they instructed Eddie to come on my left side and hold one leg.  A nurse held the other.  Eddie was getting pretty emotional watching me be in pain and hearing me screaming as I was instructed to start pushing.  At first, I did a whole lot more screaming than pushing.  A nurse said to me calmly, “OK, shhhh. Less screaming. More pushing.”  I listened and within 5 pushes, he was here.

11:51am:  Dakota is born!  They put him on my chest for about 30 seconds and I could see him and hear him cry.  It was weak and labored, but he was breathing! Eddie cut the umbilical cord, and then they took him over to the warming station and started to clean him up and help him to breath better with oxygen.  They instructed Eddie to cut the cord again, and they got an oxygen tube in his nose and wrapped him up while the doctor finished with me.  Once Dakota was stable enough, they brought him over to me and let me hold him for about 20-30 minutes.  All the while, he was crying weakly and moving.  I cried and kissed him and cried some more.  It all happened so fast that I could hardly believe that he was already here… and he looked so big for being 4 weeks early.  He looked perfect!  10 fingers, 10 toes, cute little ears, precious nose, and pink little lips. We didn't find out until much later, but he was 6 lbs. 2 oz. and 19.5 inches long.
The photographer was able to join us then, and she took some precious pictures and video.  The Neonatologist even grabbed my camera and took some pictures of us too. Thankfully, Megan arrived at the hospital soon after we arrived.  She had Jaden there on time to meet Dakota as soon as possible.  She brought him in to meet his baby brother.  He was so excited.  He couldn’t take his eyes off of him.  Soon, I felt the urgency of the doctors to take him to the NICU to further assess him.  Eddie went with Dakota, and Megan stayed with Jaden and me.  After they took him away, Jaden was walking around showing everybody Dakota’s footprints.


The first visitors to be let in after that were our pastor and youth pastor from our church.  They hadn’t seen Eddie leave the room following the Neonatal team and Dakota.  As they walked in, and heard snippets of conversation, our pastor’s face registered a look of shock as he exclaimed: “What?!? He’s here? Dakota’s born already?!?!”  Haha… I don’t know why he thought it was okay to be in the room if Dakota hadn’t been born yet.

After that, it was a blur.  Several people arrived, including Eddie’s parents and aunt and uncle.  So many people from church came, too.  I couldn’t believe how many people had arrived in such a short period of time.  Most of them had been at the 9:00-11:00 meeting at church that we had been planning to attend. Two of our good friends were in Orlando at Disney and headed back to Miami as quickly as possible. 

I was told I could get up to go see Dakota in the NICU after only 2½ hours of recovery… which I was thankful for.  No epidural = quicker recovery.  Eddie finally returned and said that they were waiting on some chest x-rays to see what his lungs look like.

When Dr. T finally came to talk to us, Eddie’s aunt was there with us.  She listened along with us to what the doctor had to say about his condition.  He was breathing at 80% oxygen, and hoped for 95%.  He said a lot that I don’t remember, but I understood that we had to make a decision.  Dakota was breathing and moving better than expected, so the doctor gave us a 50/50 chance that putting him on a ventilator would help him.  There was risk of causing a leak in his lungs, but there was also a chance that the ventilator would help his lungs to develop.  If we tried it, we would know in the next 3 days or less if it was going to help him or not.  The chance to DO SOMETHING was too tempting.  It was the first “hopeful” words out of a doctor’s mouth since his diagnosis 4 months ago.  We felt we couldn’t pass up this chance to allow the doctors to try to save him.

More hours passed, and we got word that the ventilator was in and that he was breathing at 90%.  Our little miracle baby was improving.  They were waiting on the next round of x-rays now that the ventilator was in, and we had to wait to see him. 

Once the next x-rays came back, we were told he had a small leak in one of his lungs.  That meant they had to put a chest tube in to release the air.  It started to sound scarier and less hopeful, but we were patiently waiting for the doctors to let us know when we could go see him.  In the mean time, we were moved to another room. 

Around 5:30pm: Shortly after settling into the new room, we got a phone call from Dr. T.  He said Dakota was not doing well, and we could finally go and see him.   When we got to the room, we saw our son hooked up to so many machines with wires and tubes surrounding him.  I couldn’t help but reach out to him and touch his sweet head, his feet and his hands.  I just held his hand and rubbed his head and said “I love you!” over and over again.


In the meantime, the nurse told me that Jaden could not come back to see Dakota until they had a copy of his vaccination record.  I didn’t know I needed this, so I frantically thought about where it might be.  Thankfully, I had just sorted through a stack of papers on my desk that week (which I never do because I have gotten lazy).  I had just filed that paper in the drawer and knew where to find it.  I called Megan and asked her to locate it and send me a picture of it.  Within 20 minutes, it was emailed to the nurse and they let Jaden in to see Dakota.  Praise God… Our God who is God even in the smallest of details!!!  The nurses also agreed to let Eddie’s mom and dad in too (even though only 2 people at once were allowed).  As they brought Jaden in, I panicked because I realized I had not prepared Jaden for what he was going to see.  He was about to see Dakota hooked up to all these machines and tubes and wires all around him.  I was afraid it would frighten him, but thankfully he seemed pretty calm about it.  He was willing to touch his hand with me and just looked around at all the machines.


Those very machines began telling us that his numbers were dropping.  When I looked at them, I saw the number 60… minutes later I saw a 50.  No one had to explain to me that that was bad news.  Doctor T. explained to us again what was going on… but none of it registered to my brain.  I was numb.  It felt like he was talking for an eternity, and I couldn’t absorb anything he was saying.  But I knew what he meant: it was time to take him off the machines.  I just wanted to hold him, so I was ready for that.  I asked if we could wait until my mom and sister arrived, but he said he might not even make it that long.  They were scheduled to fly in at 8:30pm to Ft. Lauderdale.  It would be 9:30 or 10:00pm before they would arrive at the hospital.

6:15pm:  We signed the papers to release Dakota from the life-sustaining machines.  God gave us both a sense of peace knowing that we tried everything we could… the doctors tried everything they could.  It just wasn’t meant to be. We look back and are thankful that we didn’t have to agonize over this decision for weeks or even days.  We knew it was time to say goodbye.

The nurse let me help put an outfit on Dakota, wrapped him in a blanket and carried him to another room.  The “transition room” they called it.  I sat on a couch with Eddie and she placed my sweet baby boy in my arms.  I held him, and then Eddie held him.  Eddie’s Mom held him, and his Dad held him.  Our friends Megan and Christina were in the room with us.  I don’t even know if anyone else was in there with us.  Soon, I had him in my arms again, and then the doctor came in to check his breathing. 



7:15pm:  The doctor told us he was gone.  There I was, surrounded by my family and friends, and Dakota was gone.  It was a moment I knew was coming, but was so heartbreaking.

Over the next few hours, the nurses allowed 50+ people to come a few at a time to see us and see Dakota.  I don’t know everyone who came, but I do know that each person who came was there to celebrate Dakota’s short life.  The love that we felt from our Core family was overwhelming!  I am so thankful for all the people who cared for us in that time.

I’m thankful for the nurses in the NICU too:  Allison and Jennifer.  They were so caring and compliant with anything we needed.  They went above and beyond what was expected.  Never once did they make me feel like we were inconveniencing them.  Never once did they turn a loved one away.  They cared for Dakota and our family so well. 

The nurses said we could give Dakota a bath and change his outfit.  The first outfit got blood on it from his chest tube being removed.  So we picked out another outfit for him to wear.  It was a little jungle outfit with a monkey on his butt.  Jaden wore it when he was a newborn, and he expressed that he wanted to share it with Dakota.  It fit him so perfectly.


The nurse helped Eddie and I bathe Dakota.  It was the one of the most emotional moments of the day.  Erika was there to photograph this precious time with him.  She encouraged me to hold him skin-to-skin, and once he was on my chest, I was filled with memories of holding Jaden just the same way.  I realized this was the only time I would get to hold him like that, and I was overcome with emotion.  My heart aches to hold him once again!  Erika gave Eddie and I some time alone with him then.  We wept together like we never have before.  









My mom and sister arrived around 10:30pm.  They were there to see Jaden finally take an interest in Dakota.  I really wanted a picture of the boys together, and Jaden wouldn’t have anything to do with him.  But after we put the cute monkey outfit on Dakota, Jaden was willing to sit on the couch with him.  



He lay down on the couch, and we put Dakota down on a blanket next to him.  Jaden spent the next 20-30 minutes just wrapping and unwrapping Dakota with the blanket.  He snuggled with him and made him “comfy.”  He wrapped “Patches” the stuffed animal up with him, and helped Dakota to “pet” him.  He said he was “teaching him to do this” as he demonstrated a thumbs up.  Those minutes where Jaden was able to play with him while he was “sleeping” were so precious.  Soon, we told him that we had to say goodbye to him.  He then stated, “I think he died now.”  My four-year-old son was processing the death of his newborn baby brother.  How is that even possible?  Why did it have to happen like that?  We said goodbye around 11:30pm, and the nurses took him out of the room.  It was so hard to let him go, knowing I would never hold him in my arms again.  I had less than 12 hours with my son, and now he was gone.


God has you in the palm of his hand.
Isaiah 49:16



Now, three months later, people are still asking, “How are you doing?”  I’m still grieving, but also healing.  We have felt so much love and support from our family and friends that some days go by that I don’t even cry anymore.  I think about him and miss him everyday, but my heart is healing.  My heart still breaks when I think about Dakota, but only because I selfishly wish he was still here with our family. I wish he was still here for Jaden to play with because I know Jaden could be such an amazing big brother.  I wish I could hold him, snuggle him, change his diaper, feed him, comfort him when he cries, and even lose sleep caring for my new-born baby.  But then I remember that he is in the most wonderful place ever:  he is in the presence of Perfection, unconditional love, and he is free of pain and tears.  He is with Jesus!  He can celebrate Jesus’ birth this Christmas while looking face-to-face with our Savior.  The song “I Can Only Imagine” has a whole new meaning to me now when I think about how Dakota doesn’t have to imagine anymore.

As I drove home from my 6-week post-partum check-up, that song came on the radio.  It reminded me of a memory I had with my baby boy while I was still carrying him.  “I Can Only Imagine” had come on the radio when I was driving to one of my pre-natal appointments.   That day, as I listened to the song, I realized that my baby boy might possibly see the face of God before I do.  I broke down at that thought and prayed for his miraculous healing so that wouldn’t happen.

Fast forward to 6-wk.-post-partum: that song came on precisely as it began raining.  It was one of those South Florida sun-showers.  As I noticed the sunshine along with the rain, I searched the sky for a rainbow… a symbol of God’s promises that He never breaks.  Sure enough, to my left, there was a beautiful rainbow arching across the sky.  Not 5 seconds later, it was gone.  God put that rainbow in the sky for me to see.  I know it was Him reminding me that He loves Dakota more than I could even love him.  I had such a peace knowing that God not only loves Dakota, but He is still loving me!

Thank you all who have been praying for us and reminding us that we are not forgotten and that Dakota's life mattered.  We wouldn't be at this stage of healing without God, the people He has put in our lives, and the ability to share openly as we walk this road of grief.  Please continue to pray for us as we hope God can continue to use Dakota's life to soften other's hearts and be open to receive Him.  

Monday, October 19, 2015

Happy 1-Month Birthday, Dakota

Happy 1-Month Birthday, Dakota -  Oct. 19, 2015
“The Lord is near to the brokenhearted
and saves the crushed in spirit.”
Psalm 34:18 (ESV)

For every valley of darkness I have traveled,
God has also brought me mountains of sunshine.
For every tear I’ve cried,
He has also granted me smiles and laughter.
For every moment of sorrow and grief,
I have also been blessed with moments of joy and thanksgiving.


Just one month ago, on Sept. 19, 2015, we met our precious baby boy and said good-bye to him less than 12 hours later.  One month ago, Dakota left this earth and entered the arms of Jesus.  In some ways, time has seemed to stand still.  Yet others, it seems to have flown by.  Those 24 hours have been etched into my memory forever and have changed my heart for an eternity.

It was interesting to notice that God was putting us on people’s minds and hearts today, on his one-month birthday.  Eddie and I received several texts and phone calls where people were just reminding us that they love us and were praying for us.  A good friend even sent a video of her kids wishing Dakota a “Happy one-month Birthday!”  It was a reminder that we are loved and cared for.  We are not forgotten, and neither is Dakota.

This morning, I also had a conversation with a new friend who didn’t know much about our journey with Dakota. She wasn’t afraid to ask me about him.  She took the time to ask me questions about his diagnosis, his birth and even his burial.  As I drove home following that conversation, I realized she had given me a gift: she had given me time and space to talk about Dakota and that felt so good.  Tears came to my eyes as I realized how much it meant to me to have someone just ask me about him.  So many people are afraid to mention him because they are afraid to upset me.  Just know this: it will never upset me to talk about my son.  It may bring me to tears, but that doesn’t mean I’m upset.  It just means I’m still healing.

Many people ask me “How are you doing?”  It is easy to give the short answer: “Fine.  We are doing okay.”  Because, we are.  But we also are not.  I have my good days and bad.  I have joyful moments and sorrowful.

Each day, something brings me joy and smiles and laughter.  But, also each day, something brings me to tears.  Each day, my heart breaks all over again; moments that I have come to expect but that always take me by surprise. 

Moments like… dropping Jaden off at school and having the other mothers notice that I’m not pregnant anymore.  Their questions and my responses:
“Did you have the baby?”
“Yes.”
“When?”
“Almost 2 weeks ago… but”
“Ohhhh! Congratulations!”
“…he passed away.” 
It feels cruel… to hit these unsuspecting strangers with such tragic news.  They were just going about their day, taking an interest in the lives of others… and BAM! They get hit over the head with death. 

Moments like… when I noticed that I had gone over 24 hours without needing to pump.  Realizing that my body is forgetting that I just gave birth to a baby 2 weeks ago.  My body feels that this pregnancy was in the distant past, but my heart is still raw with hurt.

Moments like… realizing that Eddie’s phone had pictures of Dakota on it that I had not remembered to look at.  It took me over a week to remember that they were even there.  Looking through them, I discovered two short videos taken while Dakota was still alive and breathing and crying.  That became my joy and sorrow all at once.  I am so joyful to have those sweet seconds to watch over and over again.  Yet I feel my heart breaking each time I watch those sweet seconds over and over again.  It isn’t enough.  I want more.  I have hundreds of pictures and those 2 short videos, but what I want is my baby in my arms.  (FYI: If you want to see them, ask me next time we are together.  I would love to share them with you.)

Moments like… when I find myself frustrated with Jaden or angry with Eddie.  Grief has a way of exploding over and over again, and unfortunately the ones closest to me get hit with the shrapnel.  Eddie even said, “you just don’t seem happy…” Because I’m not.  I’m not happy.  I’m sad.  I can forget that I am sad for a little while, but it always comes back.  At the same time, I am grateful.  I am thankful for the way God has carried us through this.  I am thankful that He has not left us.  I am thankful that He has put so many people in our life to love us and serve us.  I am thankful for a loving husband and a healthy 4-year-old.  I am thankful that I have so much to be thankful for.  Yet, right now, I am also sad.  I never fully understood that such opposite feelings could co-exist inside me until now.

Moments like… when I try to go back to life as ‘normal’ because that seems logical.  It seems like that is what I am supposed to do.  But then I can’t.  Life isn’t normal.  I have to learn a new normal.  Thankfully, I have godly women in my life who took the time to remind me that it is okay to not rush back to a ‘normal’ life.  It is okay to grieve.  It is important to grieve.  And it is okay to take it slow… one day at a time.

But, then there are those moments of joy.  I get reminders that God has given us such peace and grace through this whole process.  There are so many details that God has worked out for us.  I cannot express in words how much this makes me feel cared for.  God has not forgotten me.  He has prepared me for this road.  He has taken care of all of the provisions needed for the journey.  And He has provided traveling companions that have walked this road of grief before.  He has put friends by my side who have not left me to travel this road alone. He gave me a husband and son who have blessed my life and have been the perfect “traveling companions” on this journey.  He has surrounded us with a church family that have loved us and served us and carried us when we could not go on anymore. 

I have so many people to thank that I cannot begin to list them all here.  But I want you to know, if you are reading this:  Thank you!  You have prayed for us, you have loved us, you have served us, and you have acknowledged that Dakota’s life mattered.  It means the world to us. We are thankful for that and so much more. Thank you!

Friday, July 10, 2015

One Door Closed, Another Opened


Praying, praising, waiting, trusting, hoping… 
And praying some more.

I need to first start by saying “Thank you!”  To those of you who read and responded to my last post, God has used you to encourage my heart.  The sense of peace I had following that last post was beyond my understanding.  I knew that being vulnerable and transparent could open the door to more hurt, but quite the opposite happened.  I feel more loved and cared for and prayed for than ever before.  So, thank you for your prayers and your encouraging words and just being there in my moments of sorrow.  Words will never communicate the gratefulness I feel in my heart, but that is all I have, so: Thank you!

It has not been easy though.  On more than one occasion, I have given in to the temptation to turn to the world and to the internet for answers to my questions.  What I have learned is that there is NO COMFORT in that.  What I have also learned is that turning to God and His Word is a whole lot more comforting.  This is something that I have never experienced before to this extent.  My reliance on God was present, but now it is real, life sustaining, and necessary.  Never before have I felt so drawn to God and His promises: His promise to never leave me, His promise of unconditional love, His promise of a greater plan than my own, etc.  The book of Psalms has become my food, my sustenance for daily living. 

Psalm 46:10a
"Be still and know that I am God."

Psalm 68:19
“Blessed be the Lord, who daily bears us up; God is our salvation.”

Psalm 72:18-19
“Blessed be the Lord, the God of Israel, who alone does wondrous things.  Blessed be his glorious name forever; may the whole earth be filled with his glory!  Amen and Amen!”

Psalm 84:1-2
How lovely is your dwelling place, O Lord of hosts!  
My soul longs, yes, faints for the courts of the Lord; 
my heart and flesh sing for joy to the living God.”

Psalm 90:2
“Before the mountains were brought forth, or ever you had formed the earth and the world, from everlasting to everlasting you are God.”


I could go on and on… but for now, I will share our story.  The past four weeks since my last update have been ones of a roller-coaster of emotions.  The short window of time where we could try to “do something” was still open.  I was told that after 25 weeks, there is no possibility of starting treatment because by then it was too late for his lungs to properly develop.  As his Mommy, I had to do something.  Searching for a doctor to help us out was the only thing I knew to do.  Eddie had suggested that we just accept the road we are walking on and trust that God’s plan would be carried out.  I agreed, but wanted to let God open or close the doors we knocked on.

We had gathered my medical records and were seeking a doctor willing to help us out.  We started in two places: one here in Miami and the other in Maryland.  Miami… because it is close to home. Maryland… because that is where the doctor who performed a successful experimental treatment is.  If they could treat us, it would have to be soon (within 3 weeks).  And if I was a candidate, they asked for an 18month+ commitment from us.  We would need to live there to be with the baby for his medical care for 18 months or more. 18 months was a tough pill to swallow, but if that was what God led us to do, we would obey.

June 11, 2015
The morning of June 11, God answered one of our prayers.  He closed the door in Maryland, and opened the one in Miami.  In Maryland, after reviewing my records, they said I was not a candidate for treatment.  Our baby’s diagnosis was one in which they don’t accept for this type of treatment.  In Miami, they said that they didn’t know if they could help us either, but that they would see me and do their best to see if there was any way they could offer treatment.  They scheduled me for an in-depth, detailed, 1-3 hour-long ultrasound.

While we waited, we decided that naming our baby boy was important.  We decided on the name: “Dakota John.”  My dad’s name was John, and we want to honor and remember him in this time. 

June 23, 2015 (23 weeks, 4 days)
On Tuesday, June 23, we went to our appointment at Jackson Fetal Therapy Institute.  I was 23 ½ weeks and we saw this as our one chance to “do something.”  The ultrasound took about a hour, and she spent time on each of the detailed measurements of his sweet body: head, face, lips, lungs, diaphragm, heart, heart rate, spine, abdomen, arms, legs, hands, feet, kidneys, spleen… those are the ones I remember as she typed them on the screen.  I couldn’t take my eyes off the monitor as I tried to soak in every minute of seeing my precious baby boy.  Dakota hiccupped and kicked and moved so much during this time that I could even see my belly moving with some of his jabs at the ultrasound wand being pressed into my belly.  He was head down and not in breech position any longer.

When the fetal surgeon Dr. Kontopoulos came in, she took one more look at Dakota with the ultrasound wand, saying that she just wanted to see with her own eyes.  She then shared the results of what she saw.  Nothing she said was of surprise to us.  I have basically no amniotic fluid, which is crucial to lung development.  She emphasized the importance of lung development between 15-25 weeks, and that there is only a 1% chance that he will be able to breathe when he is born.  She talked more about his kidneys and that they appear to be horseshoe in shape, or connected as one.  There is no kidney function, and she can’t do anything to make them function.  In summary she said, “The prognosis is not good.”  At those words, I broke down.  That sliver of hope vanished.  The idea that maybe there is “something we can do” was gone.  The shock was gone, but the pain in its place was worse.

When they said their “goodbye” and “we wish there was something more we could do for you,” we left the hospital.  It was then that we realized that we didn’t ask any questions.  The list grew over the next week and I knew I needed to call the doctor to ask more questions and to ask the “why" questions.  "Why isn’t treatment an option?  Why? Why? Why?"

Basically, all 5 doctors we have seen or spoken to have given us the same information and the same answers.  They have not offered any treatment and have tossed their hands in the air and said, “There is N.O.T.H.I.N.G. we can do.”  Wow… why is that so hard to hear?  Why do I keep hoping that someone can offer to do something?

So, what questions did I wish we had asked?
  •           What does it mean that the kidneys look like they are joined together?
  •          What did you see when you measured his lungs?
  •          What about his other body parts?  Did everything else measure okay?
  •          What about the saline injections?  Is it too risky? Why? Have you ever done treatment by injecting saline solution or putting in an amnio port?
  •          Is induction after 25 weeks an option?
  •          Can he be delivered as a preemie and get steroid injections for his lungs? Or are they already showing signs of underdevelopment?
  •          Why is treatment an option for babies with no kidneys (complete renal agenesis) and not an option for our baby who just has non-functioning kidneys?

July 6, 2015 (25 weeks, 3 days)
After putting it off for over a week, I finally gathered up the courage to call Jackson Fetal Therapy with my list of questions.  Realistically, I knew that the chances of them being answered were slim to none, but I had to ask.  I also knew the doctor would probably be busy, so I was prepared to just leave a message with the nurse about my list of questions.

As it turns out, the doctor is out of the country for three weeks, but I was able to talk to Nurse Pam.  She is a very sweet and caring lady who did her best to help me over the phone.  When I asked her the first question…about his kidneys being joined together, she told me she could read the report that Dr. Kontopoulos had written up after we left.  As she read it quickly (it was quite long and I didn’t know what all the medical terms meant), I tried to take notes.  I tried to listen for answers to my other questions.  I tried to understand what she was saying.

I ask about the rest of his development; they won’t give me a straight answer.  From what they can see (which is difficult with no fluid), his other organs and body parts are developing normally.  The only concern is for his lungs and his kidneys.

When I asked about the saline solution injections, I am told that it is risky, there is a chance that my bag of waters would break and it would all leak out, and that it may cause me to go into pre-term labor.

When I ask about early delivery and possible steroid injections to help his lungs develop outside the womb, I hear that since he has not been able to practice breathing and developing his lungs in the past 10-15 weeks, he has a less of a chance of survival outside the womb than in.  Plus, since his kidneys are not functioning, he has an even higher risk of fatality. 

In the end, the questions that were answered were answered in such a way that left me heart-broken and hopeless once again.  It was like hearing the diagnosis for the first time all over again… only this time I was not in shock.  I was hit hard with the reality of the diagnosis… the hopelessness of the words “poor prognosis.”  It felt so final… so heart-breaking… so dark and incomprehensible.

As the nurse tried to comfort me with words of sympathy and I tearfully and politely ended the conversation, I felt crushed.  I now look down a tunnel… a very dark and very long tunnel… where there is no light at the end.  Only death and sadness. 

Then I am reminded of T.R.U.T.H.

God is still God.
He is still in control.
He is not surprised by the doctor’s words.
He is still my Rock.
He can still perform a miracle and 
He will receive all the glory for it.
He will draw me closer to Him in my darkest hour.
He will be strength in my weakness.
He will carry me when I feel I cannot go any further.

Though the waiting will be hard, I can be thankful that I am at peace with the fact that we have done all we can do to seek help from the medical professionals.  Now, it is up to God.  It was always in His hands; now I am accepting that fact. 

I trust that His will is perfect, and that if he chooses to heal our baby boy, I will be so thankful and all the glory will go to HIM. 

I trust that His will is perfect, and that if he chooses to take our baby boy to heaven, I will be thankful for the few months I carried him and all the glory will go to HIM.  I will be hurting… I will not completely understand… but I will try my very best to trust.

July 9, 2015 (25 weeks, 6 days)
Today’s appointment was just your average run-of-the-mill appointment.  Weight, blood pressure, urine sample, belly measurement, and the typical “how are you feeling?”  He looked at the results of the ultrasound from June 23, and asked if we had any further questions.  We again asked about his lung size, and got another indefinite and vague answer. 

He also told us that I am measuring 25cm, which is normal for 25 weeks, even though there is no fluid. That means that Dakota is growing.  His heartbeat is still strong and healthy.  He is still moving.  Those are small little lights to brighten our path.

I asked if he anticipated me going into labor early or needing a C-section or induction.  He basically said there is no indication that I would go into labor early, nor that I would need a C-section.  He wants to allow my body to go into labor on it’s own and take it’s natural course.  I am thankful for this.  I trust him to do his best to allow for natural child-birth.

Points of P.R.A.I.S.E:
  • I am so thankful for my amazing and supportive husband through this.  Eddie has been so patient and loving during this emotional time.  I cannot imagine walking this road without him.
  • Jaden and his gentle spirit; his hugs and kisses come at the perfect time.  He has even been known to grab a tissue to wipe away Mommy’s tears.  His stuffed animals have become a prominent part of his life: he takes one or two of them everywhere, he wants them to sleep with him, and he plays with them in such a loving and caring way.  I love watching him make “nests” for them out of blankets and pillows.
  • Our church family who have been so supportive in both words and prayers, and taken care of Jaden when we have doctor appointments.
  • Baby Dakota has a strong heartbeat and I feel him moving daily.
  • I am sleeping well and physically feeling really good.  I know there are many women who cannot say the same about their pregnancies, so I am truly thankful for how easy it has been in this area so far.
  • God and his sovereign timing to surround me with friends and other women who have been through similar circumstances.  God is using their stories to encourage and support me through the roller-coaster of emotions I feel.


Thank you for your continued prayers as we continue walking this bumpy road.  We ask that you join us in prayers for the following:
  • Pray for continued peace for the duration of my pregnancy.
  •  Pray for a miracle of healing for Baby Dakota if that be HIS will.
  • Pray for wisdom in preparing for his birth, medical decisions, and potential loss.
  • Pray for Jaden and his sweet four-year-old heart as he is so excited to be a big brother.
  •  Pray for us and our marriage as we know Satan will try to attack in our weakest hour.
  • Continue to pray that God would use us and Baby Dakota in ways we never imagine.
  • Continue to pray for comfort and peace, no matter how this story unfolds.