The story of our journey with Josiah

Three years ago, we were expecting our first son.  We were also expecting the worst but praying for the best.  Below are excerpts from my journal and our journey through what seemed like the longest pregnancy ever. 

June 4, 2010
Finding Out
I go to the midwife for a routine ultrasound. 18 weeks, perfect pregnancy. Take my vitamins without fail, exercise, pray a lot, am careful of what I eat and drink and...everything. A baby so longed for, it makes my heart ache. Then the gut-wrenching words from the ultrasound tech that my baby, my perfect little baby, is missing a part of his brain. Really? How could that be??

I sit in the waiting room with my mom, waiting for the midwife to be ready to talk, not really sure of what just happened. I get called back after what seems like an eternity. My weight and urine are taken...but I feel like saying "what's the point??!!". The medical assistant takes my blood pressure, which has to be a bit high, but she doesn't say anything.

The midwife comes in and is gracious enough to cut right to it, no small talk. I like this lady. She says the words, but my mind can't quite grasp it all. I ask for details, I want all I can know about what is happening. She mentions "Dandy-Walker" and I am all ears. Now we are talking, a diagnosis, a name...something I can research. She is so kind, so compassionate, so caring. She hugs me and it really sinks in. My baby is not quite whole.


June 4, 2010
Journaling
And all the sudden, nothing else matters. My head is spinning. I can't quite take it all in. My little baby might not be perfectly formed. And there it was sucking its thumb and moving, but the tech can't find a part of the cerebellum-something about the septum, and another measurement was a bit off. It could mean a lot of things, one potentially being Dandy-Walker variable.

It's okay. I can handle this. My God is perfect and will give me the perfect baby for me. Lord, give my husband strength. Be with him when we are so far apart. My heart hurts for him, to not be here by my side.

I love you, little baby, however you are. I love you with my whole heart.

Lord, there is a chance she just didn't see it, that the baby wasn't in a good position. So I do pray, that by Your will, everything can be formed as it was meant to be.

We will know after more testing on Monday what the results are. Father, if it be Your will, work a miracle. I have faith and know You can. But if that is not my cup, give me strength and wisdom to raise this baby in You. You are the perfect Creator. You have designed this baby with Your hands and I will trust in Your idea of perfection, not the world's. Give me strength to get through this weekend, to enjoy my family, and rest in You.

All Your ways and plans are perfect.

June 5, 2010
Peace
"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and ahope. Then you will call on me and go and pray to me, and I will listen to you. And you will seek me and find Me, when you search for me with all your heart. I will be found by you, says the Lord..." Jer. 29:11-14


For thus says the Lord: "Behold, I will extend peace to her like a river". Isaiah 66:12

June 5, 2010
Long Days
These days are long, but how thankful I am to be kept busy at the beach with my family. I can't keep it in any longer, so I take a bath. Alone. Crying. Praying. Aching. My baby. My little baby. I want you to be whole. I want you to live a normal life. I want you to not suffer.

My prayers are repetitive. Please God, help me. Bring peace, bring calm. And it comes. The peace in the storm. I read once about peace like a river and how that breaks our idea of peace like a lake. A river. That is how my heart and mind feel right now. Racing, up and down, rapids, big drops that take your breath away. And yet, over all that, there is peace. My God is good, so good. Nothing has escaped His hands. This baby is formed by Him.

Back in bed and my mom comes. Comfort. To have someone next to me is so nice. She is encouraging. She lets me cry and doesn't try to make it all better. We will be okay.

June 6, 2010
Still Waiting
Tomorrow is the testing. I feel peaceful about it, especially now that my husband is doing better. The baby's been kicking all night and I just imagine him saying "I'm okay, mom, I'm okay." How I pray that all is formed properly, or for the strength and wisdom to raise this baby if not. I will not fear because my God has formed this baby in His perfection and He doesn't make mistakes. I pray for peace over my husband and me and our families. How good our God is.
June 7, 2010
Confirmed
A 40 minute sonogram. This baby is so amazingly formed. She checks every part of this little one. She starts with the brain and lingers, then moves onto the body. His heart is perfect, his spine is formed and closed, his organs are all perfect. He has each little finger and continues to be sucking his thumb. Back to the head at the end of the sonogram. Panic. My heart is racing and it feels like there is a huge weight on my. I know she has not found what she needs to in his brain. She leaves the room, says the doctor will be in next. My parents are with me, but we talk little. I go the bathroom, one of 5 trips I will make in the next 3 hours...I've never gone so much! Nerves?

The doctor comes in and time goes slowly. He says the baby has "severe cerebral damage". I wasn't ready for that. He is smiling which doesn't connect with what he is telling me. Poor bedside manner. The baby is missing the corpus callosum, the left ventricle measures 1 mm above the normal, and perhaps there is a cyst that is forming.  There are other parts they can't find but I can't remember them all.  Oh, my baby, my little baby.

We are sent to the next office, the genetics counselor. She explains that they are calling it a potential Dandy-Walker Variant (DWV). I don't even realize the journey of medical vocabulary I am about to take. She is kind and goes slow. She lets me cry a bit and doesn't rush this. She explains DWV and I am reassured that it is not as severe as the full Syndrome. His body is perfect, which they find reassuring.

She offers a lot of options. Abortion. Amniocentesis. Follow-up. I refuse the abortion. If God has given me this baby, who am I to say I don't want it? I refuse the amniocentesis. They say it is mainly to find out if the baby has Trisomy disorders that could effect the heart, but because his heart if perfect, I feel like the risk of losing the baby from the testing (1:300) just isn't worth it.

I have so many questions, but can't think of any. Can I deliver vaginally? Yes they say, so long as there isn't excessive hydrocephalus. Will his development be normal? Maybe slow, maybe perfect, they can't tell the severity. But he has the Variant which is a better outcome. Can I go back to the Dominican Republic to be with my husband? Yes, and continue care and sonograms there, sending the results to the office.

I leave the office with a pile of papers, references, and a heart that is overwhelmed.

June 7, 2010
Phone Calls
We are all hungry by the time we leave the office. It was nearly 4 hours that we spent, but it went by in a flash. I am to meet with the Pediatric Neurologist tomorrow to understand better what DWV kids are like.

We stop for dinner and I am nearly done when my husband calls. This is so hard. I hate that I have to give him this news. I don't even understand it all in English and here I am trying to make him get it all in Spanish. Please God, give me the words. He is torn up to his core. He is thinking the worst and I can't take that away. I give him the information that they have given me, the hope they have shared, and the results.

He is hung up on why they offered me and abortion if the baby has the chance to come out normal. He doesn't believe it. I understand. Abortion isn't allowed in the DR so the doctors offering me this as an option seems like the baby must be really bad. I hold firmly that this baby is our gift from God and they can keep offering and I'll keep refusing.

Please God, don't let this divide our marriage. Work a miracle in us, stand in the gap of distance and unite us. Help him understand and feel Your peace.

June 8, 2010
Pediatric Neurologist
My mom and I cry in bed together in the morning. Sometimes it feels like it's just so much. This is mourning. It's okay to cry. It is mourning the loss of perfection, the loss of the some ideals that I held. I didn't sleep last night, tossing and turning and praying for our baby. I try to close my eyes for a minute but the Pediatric Neurologist is on the phone and wants to meet in the morning instead of the afternoon.

I am out of bed instantly, changed, and in the car. I have a list of questions and am ready to take this on. I am all business now and am fighting for answers about my baby.

What a God-send this doctor is. I tell her she is my personal cheerleader because she has encouraged us so much. She talks about the potentially scary things like shunts and follow-ups, but overall, is so positive. She says she has reviewed the sonos and results and doesn't feel like it is an absolute positive that the baby has even the Dandy-Walker variant. Relief. Some more hope dumped into the emptying well.

We learn all about this disorder. Our baby has the lowest level of risk in the Dandy-Walker scale. He may have some delays on reaching his milestones, but he will reach them. He will talk and walk and be like the other kids. He may have some struggles in reading and writing, but we can handle that.

I am encouraged with the answers to my questions. The baby should be able to learn both English and Spanish (a must for our bi-cultural family). I can deliver vaginally if no excessive hydrocephalus is present. She will be there to check the baby after delivery, which will include a head scan for fluid and some blood work.

I walk out of the office with a calm that is so nice to feel. I try explaining it all to my husband, but he has been on the internet and found bad information and photos. I can't calm this, that is God's work. I give him the information a few times over, and we are off the phone again. Thank goodness I head back to the DR tonight to be with him, I don't know how we could survive more days like this.

June 9, 2010
Back to the D.R.
Thank you for working in our marriage God. You have brought us to a new level of closeness. I have no fears because you are the center of us. This transition back to the DR has been easier than I expected. Thank you.

June 16, 2010
OB Visit
How hard it is to go to the doctor. We both went to the OB yesterday. It was hard to recount it all to her. I try to think so positively, so having to go through the negatives was tough. She thinks it is a baby boy, which is exciting to find out!! We were both so overwhelmed by the time we got home. We fell into bed and cried and prayed together. How I pray it is all for nothing. My husband seems to think the most extreme worst which makes it even harder on him.

I was on the Dandy Walker Alliance website today and was truly encouraged. The kids for the most part are normal. They look like regular kids and even if a little slow to reach the milestones, they do reach them. It will be easier that this is our first baby because we don't have others to compare it with.

I will be having extra follow-up and sonos in Santiago at the HOMS hospital where they have the right technology. A huge part of me doesn't want to do any more sonos...what's the point? We aren't going to do anything about it anyways. But we will trod on and keep checking, keep praying for the best outcome for our little one.

How I love him so dearly. I love his kicks, his moving, his growth. I pray for our adaptation and acceptation. That we will stay as positive as possible, even when it feels overwhelming. Thank You, Father, for our baby.

June 26, 2010
Hope
Hope. I'm holding onto hope. As Jon Courson talks about, hope is what keeps me going. It is what others can see that I have because of God. And it doesn't necessarily have to be hope for a perfect child (although we do hope for perfect health), but rather a God-based hope that He has a fantastic plan.

A lot of times, I'm terrified. Mainly because of the unknown, the uncertainty of things to come. If my baby was here and I had things to deal with, it would be different. For now we are left guessing.

Hope. My hope is in Him. "Let not your heart be troubled", Jesus said, "you believe in God. Believe also in me.". John 14:1. This is my opportunity to shine. But God, I don't feel very shiny.

I pray for renewal this day. Renewed hope and faith. Renewed trust. That must be what is lacking because today I feel weak. I had bad dreams last night about having a baby girl. Her head was too big so we did an emergency c-section. I barely even saw her before she was gone for testing. I just longed to hold my baby. Like now, Lord, I long to hold my baby. I want to hold him in my arms and tell him how much I love him, how special he is, how amazingly he has been created. My hope is in You. That miraculous things will happen, that You will work great and mighty things in this baby.

How long 4 months seems, but You have designed it perfectly that way. Verses that Courson reminds me of today that bring peace:

-But my God shall supply all your need according to his riches in glory by Christ Jesus. Phil. 4:19
-Delight thyself also in the Lord; and he shall supply thee the desires of thine heart. Ps. 37:4
-And we know that all things work together for good to them that love God, to them who are called according to his purpose. Rom 8:28
-I will never leave thee nor forsake thee. Heb 13:5
-Casting all your cares upon him; for he careth for you. 1 Peter 5:7

"I don't know how this is going to work ou. I don't see a solution. But God has said that He would provide for me, give guidance to me, and would always be right beside me. And He is all I need." (Courson NT commentary, p 1592)

June 28, 2010
Heart.Break
My heart breaks in different stages for my baby. Tonight is breaks because I have not been able to protect him. He is so little, so fragile, and I can't do anything to change things for him. I was so careful. I took my prenatal vitamins well before becoming pregnant, my husband even took vitamins, we planned the pregnancy, prayed for this pregnancy, and were shocked when it happened the first month. I am his mother and I have not been able to keep him safe. Heart. Breaking.

Anxiety is overwhelming sometimes. Uncertainty can make me feel like I might drown. As I lay in bed, I am thankful that my husband hasn't arrived quite yet. I let it out. I cry and pray and cry out to God. I pray for miracles. I pray for peace. I pray for calm.

And then I am quiet. I want to hear what He has to say to me. I don't do this often enough...I've always got so much to tell Him. How refreshing, how filling it is, to hear the whispers to my heart that say "It's not in your hands. It never has been". Peace. It is in our God's hands, and those are the most perfect hands to care for my baby, the same hands that have formed him.

My heart is calm. And I sleep.

July 22, 2010
Follow up Sonogram

We drive the 1.5 hours to Santiago where we have found a perinatologist with the right ultrasound machine to see our baby. We are both nervous as we drive, we make small talk, we pray, we arrive. After waiting for the hour it takes to get in to see the doctor, we are finally ushered into his office. Greetings, introductions, let's get right to it. I first ask him, before anything else, if he knows what Dandy-Walker is. Yes, he says, he has treated many, many cases of it in his office. Now we're talking...this doctor is going to help us! He reviews all the baby's results from previous sonograms and we wait very anxiously to hear what is next. He comments about me refusing the amniocentesis and the abortion and my heart goes a bit hard. I made the best decisions with the information that I had. Who is he to say that a 1/300 risk of miscarriage isn't high. It isn't his baby.

I ask if he can explain Dandy-Walker Variant to my husband in Spanish, but he suggests we have a look at the baby first so he can better understand where we are now. I head down a little hall in his office where the assistant preps me for the sono. My husband glances at me and I know he is nervous. Please Lord, help our baby, help our baby, help our baby. She takes my blood pressure but I wish she would do it afterwards, right now I know it is not normal.

We start the sonogram with finding out the sex. It is definitely a boy! Hooray, we are having a little boy. We see his little boy parts and are excited to know for sure what to prepare for.

Next stop: the brain. He scans the brain, checking all the parts. I know I am far from understanding the sonograms, but it seems like the black spot that was previously called hydrocephalus (even though it was minimal) is smaller. I keep quiet, waiting for his results. He checks the rest of the baby over, his spine, his organs, measuring, circling, marking...we just keep watching. At the end of the sono, he tells us that the baby looks great. It seems that the fluid in the brain has decreased and is very minimal now. It is only located slightly on both sides of the back of the brain, but is has decreased.

We see our little man in 3D and 4D and I want to hold him. He doesn't want to take his arm away from his face, but we he his hand opening and closing, his perfect little toes, his eyes and nose. I want to celebrate and kiss him and hug him and tell him he is our little miracle. From the beginning, he has been our miracle, but even more so now. There is joy indescribable when I look at my husband's face and see a smile. A smile. What a relief.

We head back to the office and continue talking. The doctor says he expects the baby to be fully normal, to have no developmental, emotional, or milestone delays. I breath out and realize it is the first time I have breathed freely for a few weeks. My baby, our little baby boy, is expected to be just fine. I ask if the baby was born with his brain as it is now, would he need any help, any surgeries, and the doctor says no. The amount of fluid in his brain and the location of it is so minimal that nothing would be necessary.

As we are leaving, I get the results from the exam and he mentions that other parts that were not previously found he was able to visualize. In the hustle of leaving and good-byes and thank-yous, it doesn't even cross my mind to ask him which ones. Next month, next month we will see exactly what is there.

We get to the car and praise God with another prayer. A prayer of relief and thanksgiving. We talk about how good God is and how good He would still be if the results weren't so happy. I am anxious to have the sono done again in the States, to have it all verified, but am so relieved. We celebrate with dinner and watching Eclipse in the cinema. What a difference a good doctor visit makes. Thank you, Lord.

August 7, 2010
3 Months Left
It is such joy to be pregnant. The days continue to go well, but there is always still the question that lingers about how this little baby will really be. It was reassuring to go to the doctor in Santiago, but part of me wonders how good his exam was...I don't mean to doubt, I just sometimes wonder if he looked for the right things.

We had a maternal-fetal medicine doctor on a team this week which was a surprise. I took him all the baby's results from sonos and exams to see what he would have to say as someone who wasn't my doctor. He said the main thing to watch is for hydrocephalus. Our baby measured at 11 for the ventricle and he said for a boy, 10-12 is very minimal and often boys measure a bit larger anyhow. That was good to hear.

He was concerned about the agenesis of the corpus collosum and said that is where there would likely be developmental delays, but because it seems that everything else has gone so well, he was hopeful that it wouldn't cause any problems. He gave lots of great examples of pregnancies where everything has turned out perfect after months of fear.

And so I hit the 6 month mark and love all the movement and watching my belly dance around when I am resting. This boy is amazing and he constantly reminds me he is alive and kicking! We go for another sono in Santiago in a few weeks and I'm going to ask for exact measurements of things and to point out structures that he sees that weren't there before. I can't wait to just hold my baby.

August 26, 2010
Waves
I sit here at 3:30 a.m. and feel you kicking. It's like you're born already and we're up for a feeding...except we had Raisin Bran and not breast milk. It's times like these when I sit and pray over you and wonder how anything could ever be "wrong". Your movements and activity reassure me that you are okay. I can't wait to meet you, to hold you...my arms so long to have you in them!

We went to the doctor again and got measurements this time. The ventricle is pretty much the same at 12, so that's a good thing. 10-12 is supposed to be high normal or "boy normal" so I feel good about that. It's because of this measurement that he would need the shunt, so not having more fluid is a really positive thing.

As the weeks tick by, we become more accustomed to the idea of all of this. The fear and worry comes in waves, but the waves are much less now. And besides, the verse that has gotten me through so much tough stuff already still is true "God sat enthroned at the flood, and God sits enthroned forever." What peace that brings. My God sat and watched as the rain rose day after day, killing so much, because He had a great purpose. He saw the big picture. I know that whatever waves and whatever rain that lies ahead, He will still be God on the throne who has given us this baby boy to care for. He is a God with great purposes, greater than I could ever imagine. He is going to do GREAT things in this little man because of all these things.

Maybe it'll be that nothing is ever noticed, that without having had all these sonograms, we would have never known anything was different. That is our prayer. We pray for a miracle constantly, never doubting that Jesus still heals and is able. But he may have struggles, he may have difficulties, and so I pray that God will be glorified and use these things for those great purposes that He otherwise couldn't do. I trust Him. I will continue to trust Him.

Today I'm not afraid. Today I'm not scared. Today I just want to have our baby here.

August 30, 2010
Testing, testing
This pregnancy has been a continual roller coaster of emotions, hopes, fears, and pure testing of faith. We received word that it is very likely that my husband's visa won't come through in time for him to be at the birth, or in the States at all for those first months. Heart. breaking. It's just that I can't imagine doing this without him.

We both went our separate ways after finding that out. Me to my bed to cry, pray, read, be alone. He to the couch to pray and read and think. I came out of the bedroom very decided and determined to have this baby in the Dominican Republic. That was confirmed after talking with my mom...it was the best thing to do. Then the voice of reason took over, also called my husband, and we talked through the risks of having the baby here. It's just not that safe.

I tried imagining this little one being wheeled off to surgery in the States and how hard that would be. Then I though through what that would look like here. We want the absolute best care for our baby, to never doubt our decisions, and so in the end, I will continue to head to the States in a few weeks.

I am prepared that this will be one of the hardest "leavings" I will ever have to do. I am also confident that our God wanted it this way. I will be brave, I will be strong, and I'll probably cry a lot. I trust that for whatever reason that I don't get to know now, God has a better plan than my simple one and He is working great things. That's the kind of Father He is. He only wants the best for us. So we will continue to pray that by His will a visa will come through, and if not, then He will give us peace and unity and trust as we spend this time apart.

It is for you, little baby boy, that we take these steps. We will always give you the best of what we have, which right now means us being apart. We will fight for you, prepare a great place for you, and always seek guidance from the best Father about our decisions for you.

September 27, 2010
From Dread to Joy
Back in Oregon. It is getting closer to baby time now and we are ready. Our minds are still overwhelmed with all that is ahead. The uncertainty is so hard, we just don't know what to expect.

To the doctors again. Another sonogram to follow up on his development from the 20 week sonogram...the original one that diagnosed this all. I go with less fear this time, less apprehension, I've already been told the worst, right? I am still anxious all night and don't sleep well.

Into the sonogram room again, my parents by my side. The lady doing the sono is a bit inexperienced which makes me a little nervous...will she see it all or misdiagnose something? Another sonographer comes in, one that knows how to do it right, and has a check on our little boy. She looks at the brain a lot, measuring, freezing pictures. She says she wants to get the doctor to look at it. Here we go again. Could it be worse? Now what. Then she says that she thinks she is seeing what they couldn't see before but wants to verify it. What? Wait, what??!! I won't get excited yet. I will stay calm with my belly exposed and goo all over me, trying to wait for this doctor.

He comes in and looks over all the screens, verifying that in fact, our baby now has all the structures that were not there before. A hesitant smile from me, reverse shock. Good shock. He explains that there is no longer enough evidence to support the diagnosis of Dandy Walker Variable. A name so unknown a few months ago which is so familiar now. I want to cry with joy but instead ask questions. What can we expect? A healthy baby. What follow up will there be? A sono of the baby's head after birth to verify it all. Is this for real? Yes.

I call my husband and can barely get the words out. I have to start with, "I'm crying because I'm happy", so he doesn't get scared. What a relief, what a joy, what a difference it is to tell him that our baby is fine, that Jesus has truly touched our boy and done a miracle within his brain. He can hardly talk either as we celebrate Jesus' work in our lives, in the life of our unborn son, in how He has touched each of us and grown us and formed everything in his head.

What a difference it is to get in the car this time after the appointment. We are all smiles, still in shock that this has happened. Thank you God, thank you for this change. May the glory be to You, may we use this experience for your work, to share you more in our lives. Thank you.

September 29, 2010
Reassuring CallDoubt still creeps in. Can't help it, it's there. After believing for so long that something was wrong, it is hard to take that away. God forgive me for not believing it all the time. Thank you Lord, for how you have worked in our son.

And another answer to prayers, another confirmation. The midwife calls to say how happy she is. She has just gotten the report from the maternal fetal medicine doctors and is celebrating with us. It is 8 pm, but she couldn't go home until she called and told me how pleased she was. I had to switch to the specialists from her care, but she is still watching over me. How thankful I am that she has called, how reassuring it is to hear her voice and hear once again that all the reports say that our baby will be well.

We will continue to watch the ventricle, which is measuring at 12 still. It is high normal, but normal all the same. They don't expect any problems from that, especially as it hasn't changed in these months, but we will still be rechecked at 38 weeks. I am okay with that. I am so, so okay with all that is happening.

November 11, 2010
The Lord Heals
We continue to wait and are continually reassured. The last sonogram at 38 weeks confirmed the growth of the "missing" parts of his brain. They are still watching the liquid in his left ventricle, but it appears to have not changed throughout the pregnancy. The baby was in a crooked position for measuring the fluid, so we aren't exactly sure, but the doctor seemed to not be worried about it.

At this point, plans are to deliver normally...no need for a c-section as there isn't hydrocephaly and no other problems noted on the sonogram. After delivery, but not emergently, they will do a head ultrasound to verify and check all the parts of the brain. That will be the clear determinant of what is in the brain.

We checked again after that sonogram and they have no reason to call it Dandy Walker Variant anymore. What a breath of relief.

We have decided to call him Josiah, which means "the Lord heals, The Lord sustains, the Lord saves". As soon as I saw the meaning in the baby book, I felt like this was his name. My husband liked it as well, so we will call this little man Josiah. God has worked a miracle in him and we never want to forget that. Every baby is a miracle, but we got an extra measure of miracle in ours as Jesus' hand has been seen directly working to make complete his brain. Something the doctors said wouldn't happen.

Even at the last sonogram, the doctor was saying they didn't know how it happened, that they were all talking about it saying "is it really there". We know how it happened. We serve a mighty God. Nothing is impossible for Him. Nothing.

We continue to pray for the final results of his head scan after birth, that the ventricles will be okay, that no shunt will be needed. We rest in Him. He is our strength. He has walked with us through fire and fear and given us peace, peace like a river.

And so our Josiah was born November 11, 2010.  Happy, healthy, wholly perfect.  The follow-up head ultrasounds continued for a year, but he was always just fine, no problems to worry about.  So when others ask why I believe in God, it is easy to respond..my God healed my son.  It could be explained away medically by saying they just didn't see it all on the first 3 scans, but I choose to believe that our God chose to work a miracle in our son and change his path for life.  I believe and pray that Josiah will do great things in his life, not only to serve Him, but because of what He has done for Him. 

I hope and pray that whatever the outcome would have been, I would have chosen to praise and thank God.  Be it struggle or joy, he is our son and the child God has chosen for us to raise.