baby

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.

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

Josh Baker

Last Update Before Noah’s Born

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