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.