Noah’s Birth

~ joshlbaker ~ 4 Comments

On Monday, Dec.12, we left for the hospital bright and early which was not a problem considering we could hardly sleep the night before. On our way we turned on the Hillsong Lullabies II album so we could sing those songs over Noah one more time. It was a very peaceful drive and another special moment we had with our sweet boy.

We were about 45min early because we were expecting icy roads and thankfully that was not the case. This gave us time to pray over Noah before going into the hospital. We thanked God for the time we had already enjoyed with Noah. We asked God once again for healing for Noah and for strength for us to get through the day, no matter the outcome.

Once we got checked in we were taken to our room. One of the nurses, who we already knew, came in to start my IV. It was so nice to see a kind and familiar face. After getting my IV started she hooked up a fetal heart monitor, which made us so happy! We loved going to my regular OB appointments because we got to hear his heat beat. Of course, Noah was being his usual ornery self and they kept loosing his heart beat because he kept moving.

Both of our parents arrived before I was taken back to the OR. It was so comforting to know they were there. They took me back around 7:40am and it was so weird to walk into the OR and see everything set up for my own surgery. I was cold, shaking and scared to death for a million reasons. I was just trying to focus on Noah and not passing out and not getting sick so I could be ready for him.

Shortly after they started the surgery one the nurses brought Josh in to the OR. Within about 10-15 minutes Noah was born. I was so scared because I couldn’t hear or see him and I didn’t know if he was alive. One of the nurses said, “It’s what we were afraid of… His arms and legs are very short.” When I heard “it’s what we were afraid of,” my heart sank, but when she said, “his arms and legs are very short” I thought, “yeah I know and that’s not what I was afraid of.” As I looked over at Josh I saw him smiling over Noah and I knew he was alive. I was listening hard and could finally her his sweet little cry. They brought Noah to my side so I could see him real quick before they took him upstairs to the NICU.

I was so excited they were taking him to the NICU. In a conference we had with the doctors and nurses they said they were not planning on doing anything to assist him unless he showed more strength then they expected. So, Noah being taken to the NICU gave me hope he might make it.

When Noah and Josh walked out of that room it was the worse feeling in the world. It killed me to be so helpless and unable to comfort my crying new born.

Finally, I was stitched up and taken back to my room. Our parents and my sisters were there. Within a few minutes a nurse came in and told us that Josh requested our parents be taken upstairs. This scared me because I didn’t know if that was a good or bad sign. I wanted to go with them so bad, but I was still numb and not able or allowed to sit up or get in a wheelchair for at least an hour after my surgery. I was so thankful to have my sisters by my side, as our parents went to the NICU.

Josh texted my sisters to see if I wanted to FaceTime so I could see Noah. I have never been so thankful for that stupid iPhone that I complain about all the time. I got to see and talk to Noah while we were apart. We even used one of my sisters phones to record his little cry.

He was on a CPAP machine and I don’t think he liked it very much. The NICU doctor said he was crying like any other new born and he didn’t believe he was in any pain. We are so thankful for that!

They did x-rays and determined that he did not have brittle bone disease like the doctors had predicted. They think he had Thanatophoric Dysplasia, a lethal form of skeletal dysplasia (but we won’t know for sure until we get the genetic test results back). His ribs were so short and narrow and because of this his lungs could not develop enough for him to ever be able to breath on his own. The NICU doctor removed the CPAP machine and brought Noah to my room right away.

As I turned off FaceTime and waited for Noah, for the first time my hope was completely shattered and all I could feel was pain and anger. My worst nightmare was becoming a reality and it was happening too fast for me to comprehend. I was so afraid that if my time with Noah was short I would be too emotional to really be with him. When they walked in the room and handed Noah to me my heart changed. I was so happy to finally hold my son and I felt so much peace and joy in that moment. Of course, I was still devastated knowing I would soon loose this precious little life, but I was given a strength that was not my own. God was in control and even though He was not answering my prayers the way I wanted Him to He was faithful in His promise.

Philippians 4:6-7
“6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

We were able to hold Noah, kiss him and tell him that we love him. That moment felt so good and everything else temporarily faded away. He had been given some pain medication so he would be comfortable and after I had been holding him for about 30-45min the doctor checked for a heart beat. Noah was gone. It was the best and worst day of our lives.

We are so thankful for all the family and friends that came to the hospital to support us. We love Noah so much and now understand why people post like 500 pictures of their kids. You just feel so in love and so proud and you want everyone to know and see how amazing they are. I didn’t realize how fast those feelings set in and I’m so grateful we had people there to meet him. We are also thankful our photographer, Sara Long Photography, was there early and ready to go so we have pictures to forever remember our beautiful son and the time we were blessed to have with him.

We are also so grateful for all the family and friends that have continued to support us through prayer, meals, meaningful gifts, cards, distractions and checking in to see how we are doing. We love and appreciate each one of you!

 

Last Update Before Noah’s Born

~ joshlbaker ~ 1 Comment

Sorry this has taken so long. It’s getting harder and harder to write about this.
This will be the last post we write before Noah is born.

We have had several very tough appointments in the past few weeks.

We first had another ultrasound two weeks ago (Nov 2nd) where we were told that Noah is not getting better and the doctors are fairly convinced he will not live long after birth.

We had a session with a friend and counselor for some guidance that same day. It was very helpful and good, but also very difficult for us to swallow. His advice was to plan for what the doctors are saying the outcome will be, but continue to pray for God to heal. There was a little bit of freedom in that, not having to be torn between the consistent prognosis from the doctors and trying to ignore what they are saying and hold on to hope that God will heal our son. It’s not that our hope is completely gone or that we don’t believe that God can heal Noah, but we have a plan and a path. And that plan and path is so much harder than we expected. While our trust is still completely in God and believe He can heal our son, we are preparing our hearts for Noah to not survive long after birth.

Tuesday, November 8th (Election Day) we had a conference with specialists, neonatologists, a genetic counselor, Steph’s OB/GYN and our parents. Information was revealed that we were not fully aware of. The hardest thing we heard was that Noah has multiple fractures in his arms, legs, and ribs and is feeling “discomfort” (as the doctor put it). His bones are very fragile and because of that there is a lot of things that they will not be able to do, like chest compressions because it would crush his ribs. The plan is to have a C-section to minimize bone fractures and then try to determine how Noah is actually doing and manage his pain from the fractures and his struggle to breathe.

Wednesday, November 9th, we met with Steph’s OB/GYN who helped us understand things a little more. Noah’s ribs, lungs, arms and legs had stopped growing around the 15-16 week mark and a baby with lungs that underdeveloped with no other issues would not be able to survive….

The plan is to allow us to spend as much time as possible with him while still having the doctors do all that they can.

The C-Section is scheduled for 7:15am on Monday, December 12th.

If Noah is able to breathe on his own, then he will spend a long time (as in months) in the NICU at Children’s Hospital.

Aside from a complete and full miracle from the Lord, it’s going to be a long and hard road ahead for Steph and I.

Again, we have not given up hope of healing. We are simply watching what the Lord is doing or not doing and moving in that direction. If He starts to change Noah’s condition, then we will move in that direction. It is so difficult and many many tears have been cried so far, but we continue to do our best to put our trust in Him.

There have been moments of amazing grace through this whole thing though. On Saturday, the 12th, I was feeling frustrated and I was feeling so alone. Feeling like no one understands what I am going through. I know that is not true. I know there are people who have gone through very similar things, but I was in a rough place. As I started to run through the songs for service, I got to How Deep The Father’s Love. I started to sing the first verse,

How deep the Father’s love for us,
How vast beyond all measure,
That He should give His only Son
To make a wretch His treasure.
How great the pain of searing loss –
The Father turns His face away,
As wounds which mar the Chosen One
Bring many sons to glory.

As I started to sing through that verse, God the Father said to me, “I understand… and I love you.”

It wrecked me. I was undone. I had always looked at the coming of Christ and His death on the cross through the lens of Jesus’ perspective or those around Him. I hadn’t really considered it from God the Father’s view. It was the first time I really really really felt His loving arms wrap around me and just hold me in peace.

So thankful for His grace and love.

I can’t thank you all enough for your prayers and support through all of this. Your kindness and compassion has been life giving to my wife and I. Thank you for being the body of Christ to us and showing us first hand what it means to be apart of the family of God.

A Quick Update…

~ joshlbaker ~ 7 Comments

Today, Steph and I had another appointment at St. Annes with the Maternal Fetal Medicine group. The appointment was pretty brief.

They took more measurements and tried to get us a few good pictures of his face, but he was being a booger and wouldn’t look at the “camera”.

We saw a different doctor who said the same thing the other doctors have been saying. His long bones still look very short and the doctor is convinced that Noah won’t survive after birth.

I keep wrestling with what to say in this post. Mostly because I don’t feel like writing one today because today has been a very hard day for us. I feel broken and I don’t know how to handle this any more. I think one of the toughest things about tragedy and hardships is that the world doesn’t stop spinning so you can get yourself together.

We haven’t given up hope. It’s just so hard not knowing what God’s plan and will is. We know that God is the great healer, but it’s not always His will to heal. He is the holder of life and death, and yet we still lose people we love. We know that He is sovereign over us, and we still go through hardships. We know that He is good and He works all things for good for those who love Him and are called according to His purpose, but sometimes we can’t see His goodness and we can’t see what He is working.

We continue to fix our eyes on the Lord and pray for our son’s healing.

Sorry for the scattered thoughts and the poorly written post today. If the right words strike me later I will write another post soon.

We thank you all for your love and support and want you to know if you bump into us or see us at church, please don’t be afraid to speak to us, pray for us, ask us questions, ect… We are so thankful for our friends, family and the body of Christ.

– Josh

It Isn’t Over Till Jesus Says It’s Over

~ joshlbaker ~ 4 Comments

On Wednesday, August 31st, Steph and I traveled to Children’s Hospital in Columbus to have an Echo performed on Noah’s heart to make sure everything was developing properly. It was a great visit. The ultrasound technician had no issues getting the images she needed and the doctor came back with positive news about the condition of Noah’s heart. He said it was growing and developing at a normal rate for his gestational age. That visit, coupled with our previous visit to Steph’s OB/GYN left us pretty joyful and optimistic. 

Today we had another appointment at St. Ann’s with a Maternal Fetal Medicine specialist to see how Noah’s long bones are developing. It’s been a rough few days emotionally leading up to this appointment. After receive good news after good news and all the encouragement and prayer from so many awesome people, we wanted so badly to hear more good news and see answers to prayer. 

Unfortunately that’s not what happened.

It was an emotional roller coaster today. Sitting in the ultrasound room, I watched the technician run the transducer (the ultrasound wand) over Steph’s stomach and saw the outline of our son appear in black and white on a TV monitor. 

I put my hand on Steph’s shoulder and began to pray that God, in His sovereignty, would heal our son. That He would hear the prayers of all the people who have committed to pray for us. That He would choose to reveal His glory through the healing of our son. 

All of a sudden, I saw something I had never seen before. A 3D image of Noah’s face appeared on the screen. It felt like the first time I watched the Wizard of Oz and the picture changed from the dull black and white of Kansas to the beautiful technicolor of Oz. My heart melted.

Even though his face was pressed up against Steph’s placenta (as if he was snuggling with her) we could still see some amazing features. It was evident right away that he has her nose and her mouth. He was even yawning and sticking out his tongue. But it was evident he has my personality because he was being very stubborn and would not cooperate with the technician. 

After several attempts to get a clear picture of his face the technician finally gave up. Even though they were a little distorted because of his positioning, we were so thankful for what we saw. 

A few minutes later the specialist came in. It was a different doctor than we had seen before (which is normal because they all rotate). He told us that Noah had grown some since our last appointment, but he was still very concerned. A few of his bones did look bent or fractured, and some of them had signs of Osteogenesis Imperfecta (brittle bone disease). 

It felt like someone put the cinder block back on my chest.

He went on to tell us that his long bones were still very short and his rib development was still a serious concern. They showed us on the ultrasound how his heart, which is normal size, was taking up a lot of space within his chest because the ribs are small. This means there is even less room for his lungs to develop. 

We were so excited about seeing him in 3D and so crushed by the doctors report.

When we got in our car to head home and we could feel the weight of this pulling us down into the storm again. We were starting to take our eyes off of Jesus and back onto the waves that were looming over us. As the tears began to roll down our cheeks, I felt the Spirit of God preach to my soul, 

“It isn’t over till Jesus says it’s over.” 
“When I saw him, I fell at his feet as though dead. But he laid his right hand on me, saying, “Fear not, I am the first and the last, and the living one. I died, and behold I am alive forevermore, and I have the keys of Death and Hades.” – Revelation 1:17-18

 

A Little Good News And A Whole Lot Of Praise

~ joshlbaker ~ 7 Comments

We are sorry for not updating everyone a little sooner, things have been pretty hectic for us this past week. But we wanted to let everyone know a couple of good things that have happened recently.

After our appointment with the specialist on Monday, August 15th, we had a follow up appointment with Steph’s OBGYN on Wednesday, the 17th.

Even though we felt God’s peace that surpasses all understanding during our appointment with the specialist, I really didn’t care to go to the appointment with the OBGYN. I assumed he would tell Steph and I what we just heard two days before, but less informed since he wasn’t even there. Just one more person to tell us all the bad things that are happening, but that wasn’t the case at all.

He told us that the cystic hygroma on the back of Noah’s neck (the thing that started all of this) was gone! We couldn’t believe it! The “specialist” failed to mention this to us at the at our appointment. The OBGYN also told us that Noah’s bones may not actually be bent, rather they could just appear that way in the ultrasound due to a bad angle or poor imaging.

While it’s still possible that his bones are bent or broken, it was such a relief to finally hear a doctor tell us that ultrasound images are not 100% reliable. We are trying not to get too excited about this possibility incase it turns out they are bent or broken, but we are hoping and praying that his bones are growing straight and strong.

These two things may seem small to other people, but to us they are huge! We thank the Lord for healing Noah’s cystic hygroma and for the possibility that his bones are ok. We continue to pray for our son and put our full trust in God’s sovereignty. No matter the outcome, God is worthy of our praise.

Steph and I would love nothing more than to not have to go through this, but at the same time we know that God is doing something amazing in us. I was recently reminded of this at a men’s bible study I am in. We started studying James and the first chapter was so good for my heart.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him.
– James 1:2–5 (ESV)

The word “steadfastness” in the greek is “hypomonēn” and it means “patient endurance.” James is telling his readers to rejoice in their trials and to endure them with patience until the very end, so that they would find their full joy in Christ and become more like Him. That should be our desire above any other desires. May we long for more of Jesus and to be more like Him.

We are so thankful to everyone who has been praying for Noah and Steph and I and encouraging us. The response and love has been overwhelming.

Here are a few upcoming appointments.
Echo at Children’s Hospital on Wednesday, August 31st.
OBGYN on Wednesday, September 7th.
Specialist (Maternal Fetal Medicine) on Monday, September 12th. 

With Love
Josh and Steph Baker

Peace In The Storm

~ joshlbaker ~ 6 Comments

We haven’t posted for a while because we have been waiting for some new information on our little guy, Noah. Josh and I (Stephanie) would like to say THANK YOU so much to all who have been praying and sending us songs and scripture. You will never know how encouraging your kind words have been.

We had an appointment today to remeasure Noah’s long bones and check other areas that have been hard to get on ultrasounds in the past. It was so good to see our little wiggle worm and it was amazing to see him kick and feel it at the same time. Josh also got a recording his heart beat which is our favorite sound in the world.

He is growing but his chest, arms and legs are still pretty far behind the rest of his body. His legs and arms now appear to be bowed or bent. They were able to get better images of his brain and heart this time and both are growing on track and look perfect. Even though his heart looks great on ultrasound, to be safe, they are sending us to get an echo at Children’s because heart issues are common in babies with dysplasia.

The doctors are trying to narrow down the possibilities as much as they can, but we will not have an exact answer as to what type of dysplasia Noah has until he is born. Due to the bowing or bending in his limbs they feel Osteogenesis Imperfect (brittle-bone disease) is a possibility. So we got a little more info, but again they have no way of knowing anything for sure at this point and there are still a ton of possibilities.

This was our 4th appointment with maternal fetal medicine at St. Ann’s and this was the first time we truly had a peace throughout the entire process. Of course we were sad to not see a significant growth spurt, but God is in charge and He is holding us up.

But you, O LORD, are a shield about me, my glory, and the lifter of my head.
– Psalm 3:3

We have no idea how things will work out with Noah. We might have a short time with him or he could out live us all, but we are going to make the most of the time we do have with him. Josh got me belly buds for Mother’s Day this year. They are sticky headphones that are a safe volume for babies in the womb and they have a spliter so we can listen with him. Noah has been listening to some of our favorite worship songs as well as songs we recorded. We have also been working hard on his room in anticipation of him coming home with us in December.

We have another appointment in 4 weeks and appreciate all the prayers we can get. Thank you again for all the love and support!

The first post: Our Storm

~ joshlbaker ~ 7 Comments

I have been wanting to start a blog for the past few years, but I always felt like I didn’t have time or content to sustain it. Basically, I was making excuses. I wanted to write about worship, but over the past few weeks the Lord has been leading me to write about something else. Something very personal to my wife, Stephanie and I. Something that is hard to talk about.

But as the days go on, I consistently hear the voice of the Lord reminding me that “my story” isn’t really “my story” but His story and the church’s story. It’s His story because He is the author of my life (Hebrews 12:2). It’s our story because scripture says that we are to bear one another’s burdens (Galatians 6:2). It is our story because we are the family of God – and maybe our story can help someone else through a difficult time.

A few years ago, my wife and I decided to start trying to have kids. We tried for over a year with no luck. After getting set up with a fertility specialist and a few months of testing, we came to understand that the issue was with me. (To spare you all the details we will just say things weren’t working right with me in the fertility department.) We tried a few different things the doctor recommended but nothing worked. In the fall of 2015 we decided to take a break from trying.

The Monday before Christmas, Steph told me there was a surprise in my stocking that she wanted me to open at that moment. So I reached in and pulled out a Superman onesie and a pregnancy test that read “positive.” We laughed and cried and celebrated together. We knew that normally you are supposed to wait till after the first trimester to announce your pregnancy, but we were so excited and wanted our families to celebrate with us. We both thought this was clearly a “Christmas miracle” and nothing bad could happen. I mean, God had healed me and we were going to have a baby! Right? So we told our families, who also laughed and cried and celebrated with us.

Six days later we had a miscarriage.

We wept and cried out to the Lord for weeks. We spent New Year’s Eve alone in our house where the tears flowed off and on. It was the saddest New Year’s we had experienced as a married couple. Though our hearts were sad and needed time to heal (and still do), we rested on His word. We held on to the truth that He is good and faithful and sovereign.

We rested on verses like Romans 8:28-30, 

“And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.”

We knew that the good He was working in our situation (and all situations) is for us to be more like His Son, Jesus. We held on to Psalm 139 and Revelation 1. We pressed into Him and we didn’t take our eyes off Him.

January of 2016 was a very busy month for us – a song recording, a worship conference, a popular church series and many other things inhabited our busy schedules. But we pressed in and decided to try and have another baby. We got set up with a new specialist who put me on better medication that would help correct the fertility issues I was having.

In March, we got pregnant again. This time the positive pregnancy test was not met with as much excitement as before. We were still working through the loss of our first child and we were fearful of having another miscarriage.

We went to our first ultrasound on May 4th… Yes, national Star Wars day (May the 4th be with you).  I personally felt like the Lord was giving us a sign that our child should be named after a Star Wars character, but Steph wasn’t buying it. We found out that our little bean wasn’t as far along as we had originally thought. We were only 7 weeks pregnant. However, we heard his heartbeat and it took my breath away. We were so excited.

At week 13 of the pregnancy, on June 17th, we went to a place called Ultrasona to find out the gender. They said everything looked good as far as they could tell and that we are having a boy. We had a sweet gender reveal a few days later (which you can watch here if you’d like). 

On Wednesday, July 6th, Steph called me in tears. Saying that her doctor called her and that there might be something wrong with our baby.

After reviewing the ultrasounds from Ultrasona he said they saw something called a Cystic Hygroma on the back of the babies neck. The doctor said he wanted us to see a specialist at St. Ann’s Hospital right away. We had an appointment set up for that Friday.

For three days we prayed and prayed and cried out to the Lord to heal our son. I walked into that appointment with confidence that they wouldn’t find anything. That God had fully healed my son.

They did an ultrasound that seemed to last forever. The doctor said he was concerned because the Nuchal Fold on the back of his neck, where the Cystic Hygroma was, was larger than normal and his long bones in his arms and legs were a few weeks behind in growth. This indicated he might have Down’s Syndrome or some form of Skeletal Dysplasia. It felt like someone took a stack of cinder blocks and laid them on my chest. I couldn’t stop thinking, “God, why didn’t You heal Him? Why didn’t You heal my son!?”

They told us to take the weekend to think about and process everything they had told us. They wanted us to come back the following Monday to do some blood tests and to meet someone who would help us walk through this situation.

“Taking the weekend to process” may work for normal families but when you work in ministry like I do, the weekend is not the best time to be processing what could be life-altering news.

All the joy we had about being pregnant and having a son seemed to be swallowed up by this giant MAYBE. Maybe he is ok, maybe he isn’t…  All the excitement of decorating his room, picking out a name, imagining what it would be like to take my son to the park or on family trips, dreaming with my wife about his possible future and all that God could have in store for him, all that joy and excitement and hope… gone…  fear and doubt and anger took their place.

Monday’s appointment came and went and the news wasn’t any better… actually it was worse. She told us about all the possible horrible scenarios that it MIGHT be. Steph did the blood test that would screen for Down’s Syndrome and two other chromosomal abnormalities. It would take 7-14 business days before we got the results back. The appointment felt so heavy and we left fearful for our son.

It was so hard to see God’s goodness at that moment. The Bible verses that I had held onto back in December brought no comfort. Actually, they made me angry.

Thinking about my understanding of Romans 8:28-30, that the good He works in all situations is for us to be more like His son, frustrated me. I kept thinking, “what a horrible God You would be if You afflicted my son with a disease so that I could become more like Your Son, Jesus.” I was angry and broken. I didn’t want to see things through His eyes. I only wanted what I had envisioned for my son. 

It felt like God had crushed us and hid Himself from us.

That evening my dad stopped by to drop something off. I couldn’t hold back my tears. I bent over and wept. I told him everything that was going on and he hugged us and prayed for us and encouraged us. It was a God moment. I needed to hear the things that he said.

The next day I went into the baby’s room and started to write scripture all over the walls. Verses like,

Romans 15:13 (ESV) — 13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Hebrews 6:19–20 (ESV) — 19 We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain, where Jesus has gone as a forerunner on our behalf…

Mark 9:23–24 (ESV) — 23 And Jesus said to him, “ ‘If you can’! All things are possible for one who believes.” Immediately the father of the child cried out and said, “I believe; help my unbelief!”

Mark 5:36 (ESV) — 36 …“Do not fear, only believe.”

I taped our son’s ultrasound pictures to the wall that showed the “abnormalities” so we could pray over him. I created a playlist on my phone and a song called “The Rock Won’t Move” by Vertical Church became the song of my heart.

As I spent time praying and crying out to the Lord, He began to soften my heart. After receiving the news that there might be something seriously wrong with our son I was so mad at God. But within a few days of prayer I found myself clinging to His feet like a child begging to be picked up by His father. I needed His peace. I needed to see His goodness. I needed Him to wrap His arms around me and tell me it was going to be ok. I needed Him to speak into this storm and calm the waves.

As I pursued Him, He revealed Himself to me. A peace and hope began to rise up within me. It then became overwhelmingly clear that I hadn’t surrendered our son’s life over to the Lord. There was a tinge of mistrust after the miscarriage. I didn’t fully trust Him with our son. I didn’t trust Him to do what I considered to be good and right.

For the first time since we found out we were pregnant I prayed to Him and surrendered our son. I surrendered his growth, his development, his purpose, his future, and hardest of all… his life.

On Sunday, July 17th, members of the Lifepoint Staff and some good friends surrounded Steph and I and prayed for us and our son. Their presence and prayers meant more to us than they will ever know. It was life giving.

On Wednesday morning, July 20th, the day of our next ultrasound with the specialist, we got a call with the results from the blood test. They were 99% negative for Down’s, Edwards, and Patau Syndrome. We definitely celebrated and thanked God, but we still had to go back to the specialist that afternoon.

At the appointment, the doctor told us his long bones hadn’t improved in growth and he was now getting concerned with the development of his rib cage. He seems convinced that our son has some form of Skeletal Dysplasia (of which there are over 350 different forms).

If his ribs don’t grow, his lungs can’t develop properly and he will die outside of the womb. They want us to prepare for the worst-case scenario; that he would be stillborn or die shortly after birth. The appointment was hard, but it was different than the first one. I could feel the Lord surrounding us.

On Wednesday, July 27th, we went for, what would have been, our normal 20 week check up had everything been ok. We were looking forward to seeing our son on the ultrasound and hoping for some better news.

We did get to see our little wiggle worm moving around in there and that was joyous. However, the meeting with Steph’s OBGYN was not so joyous. I could tell from the things he said that he didn’t hold much hope for our son. He mentioned that our son’s brain could be damaged because of this disease.

He asked us if we have considered terminating the pregnancy. (Please know that he didn’t push it or insist upon it, he was simply making sure we had been given that option if we wanted it.) But hearing him ask that and the look on his face, as if our son was already gone, was crushing.

We still don’t understand why the Lord is doing this. We can’t see His plan, but we know He has one. He is good and loving and just and righteous. He is faithful even when we are not. He is good even when we can’t see it. He is with us even when we can’t feel Him.

Don’t get me wrong. This is still really hard for us; and the fear, at times, is viciously overwhelming. It’s a struggle to find joy at the moment. However, I am thankful for verses like Philippians 4:4-7 that remind me that rejoicing isn’t always done with a smile, but it’s a heart cry to the Lord that I trust Him.

Philippians 4:4–7 (ESV) — 4 Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Our next ultrasound is Monday, August 15th.
We appreciate all the prayers we can get.

We will continue to fix our eyes on the Lord and trust in His sovereignty.

2 Chronicles 20:12
“…For we are powerless against this great horde that is coming against us.
We do not know what to do, but our eyes are on you.”

Here is a link to a playlist I created to sing truth over us during this trial.
iTunes playlist: Through The Storm

These are some specific songs that have been great reminders of His goodness and faithfulness, and a source of strength as we go through this storm.