Nathaniel's Journey: Hope After A Diagnosis

/ Commentary

When I became pregnant with my sixth child, I was overjoyed. This would be my fourth baby as I had two in Heaven, and every time I realized I was pregnant I was triumphant. A lot happened to me physically and medically as a child which caused doctors to say I may never have children but I had known, even as a small child, that I not only wanted children but I wanted a lot of them.

So naturally as I looked at the two pink lines indicating LIFE was being created in my womb, I was overjoyed. As the months passed along, we dealt with typical pregnancy issues and pains but my 6th pregnancy was my best by far. After the morning sickness phase was over I felt revitalized. I had so much energy, I was eating healthy and very active. We planned a baby shower, picked out baby things in a baby registry and went a long happily. At 20 weeks we had our anatomy scan and we were told we were having a healthy boy.

I have had my fair share of ultrasounds and I asked the technician why the baby’s tummy was so much larger than everything else. She measured it three times and assured me it was fine but I felt so uneasy. I was told our baby was measuring correctly and was happy and healthy according to his heart rate. So my husband and I moved on past the wondering and trusted the technician.

We began looking for names. A baby’s name is a very important thing to us. We do not pick names based on the way they sound alone, although that is nice. We always pick names which mean something special, too. Names which proclaim greatness over our child. We searched for a long time to find the “perfect” name for our new son. I had always loved the name Gabriel Alexander. It is a strong name but it didn’t feel right.

One night I heard the name, Nathaniel, in my head. I had not read it anywhere or seen it — it was not a common name anymore and did not appear on the most popular baby boy name lists online we had been using to research names. I simply heard it in my mind.

I looked over at my husband and said, “I think his name is supposed to be Nathaniel but I don’t like it.”

I didn’t like the sound of Nathaniel and I was still trying to make Gabriel happen. So I tried Gabriel Nathaniel or Gabriel Alexander Nathaniel but it still did not “feel” right. You know when you have picked the right name because you have peace and you just feel like that is your baby’s name.

So after days of this wishy washy back and forth stuff, my husband looked me in the eye and said, “You heard the name Nathaniel in your mind because God is trying to name our son. His name should be Nathaniel.”

We conceded to agree his name was Nathaniel and decided to look up the meaning. Nathaniel means “Gift of God.” From that moment it felt perfect. His name was Nathaniel. Rolling along to 25 weeks, I started feeling Nathaniel move less often and I brought it up to my midwife assistant. I was told many babies decrease in movement slightly when they get larger, but I just could not shake the feeling something was wrong. By 26 weeks I noticed he was not only moving less but hitting me with less “umph.”

His heart rate was good and my stomach was measuring on schedule so I was told again everything was fine but the feeling of doom got worse. I could not shake it. I started having nightmares and panicking.

I counted his movements ALL OF THE TIME and personally felt like they were becoming fewer and fewer. But “he’s fine” is all I heard from everyone. “You’re just worrying yourself, this isn’t healthy for you or the baby,” and people prayed for my anxiety to go away.

One Sunday morning I woke and thought I perhaps had felt him move but was not even quite sure because the feeling was so light. I went to church and prayed. I talked to my friends and mentors. I tried to count his kicks all day as usual but I felt nothing at all. That evening our church had a Fall Festival.

November 1, 2015, and I still had not felt him move, but at this point I was tired of asking people about it because I just felt crazy. But as the night went on I came across one of my friends who was also expecting and was further along.

I asked her, “does your baby ever have periods of time where they don’t move for a while?” She said “yes,” and relief took over me for a moment but then she said, “but it’s usually only a few hours,” and I started to cry and could not stop.

She, of course immediately gathered friends to pray again. Pray for my peace. Pray for clarity. Pray for health for my baby.

I told them I had not felt him move all day long and they told me to call my midwife in the morning. The next morning I woke at 7 a.m. and started doing everything I could to count kicks. I drank cold water. I drank juice. I ate something sugary. I drank hot coffee. Each time I tried something new I laid on my side and waited to feel kicks…nothing.

So I called my midwife. I explained in detail what was happening and she called to have me worked in at an imaging facility. I arrived at 9 a.m. with my toddler on my hip and kept him as happy as I could until noon when I was finally seen for a BPP, biophysical profile. You get “points” for movement, muscle tone, practice breathing movements, and amniotic fluid amount. Nathaniel scored a 2 out of 10 due to good amniotic fluid amounts, and that alone.

He had a strong heartbeat. That much was still true but he was not moving. The ultrasound was 30 minutes long and he had not moved so I was told to go to the hospital to get a non-stress test done.

Naturally I did not want to take my 17 month old with me to the hospital so I dropped him off with my mother in law in Seguin and I planned to go to San Antonio to one of the “big” hospitals.

My midwife and my mother-in-law said “no — go to the nearest hospital.”

When I arrived, Nathaniel was in distress and needed to be born immediately via c-section. My husband arrived moments before Nathaniel was born and thankfully did not miss a thing. I needed him by my side. He reminded me to breathe. There was so much pain and so much fear. I was having a panic attack. Would our baby live?

The moment the doctor said, “this baby needs to come out now,” fear had struck me. “Wait! I’m only 27 weeks. That’s too soon. He won’t live. Wait,” I thought to myself.

There was no time to wait, but I called my midwife and she spoke to the doctor. This really had to happen. I was about to become a mother to a premature infant and I had no idea if he would live or die. I had no idea what to expect. I looked the doctor in the eye and asked her to promise me he would live (in hindsight I know she could not do that, but she was amazing).

She came close to me, put her hand on my shoulder and said, “We are going to do absolutely everything we possibly can to save him.”

In the operating room they prepped me and they all told me they were praying for my son and I. They had their coworkers and bosses praying too.

When Nathaniel was born I didn’t hear a cry and did not even get to see him. There was no joy. There was only a small measure of hope - hope they would save him. I look back on those moments now and realize that my questions were ridiculous because I could not comprehend the situation. I kept asking them how much he weighed and the time he was born. A question I asked when all my children were born but I received no answer. They were too busy attempting to save him.

Someone came and told us that he was 2 lbs, 8 oz as I was being rolled off to the recovery room. They told us we could see him in about three hours. The hours passed on and on. We kept asking and waiting to see him. I could not rest or even think. My mind is even frazzled and blank when I try to rethink of what went on in the six hours we waited to see our newborn son, completely oblivious to what it really means to have a child born premature. It had never touched me like this before. I never knew, but then, you do not really know until it is you.

Someone came in our room six hours after our son was born to tell us that he was not responding to the synthesized surfactant they had there (surfactant is the liquid created inside a baby’s lungs in utero to make it easier for babies to breathe when born...it’s created at 28 weeks and my son did not have any). They told us he was not accepting the ventilator either. His lungs could not handle the ventilator and he needed an oscillator but they did not have one. They told us he coded every time they tried to move him but they finally got him in a transport incubator and they were going to be flying him via helicopter to a hospital an hour away in San Antonio.

“Why are you wasting time telling me all this?” My mind still didn’t comprehend. “Why aren’t you flying him off now? Save him!” “Ma’am,” she said, “we didn’t want to take him until you got to see him at least once…”

It hit me and I began to sob. They were telling me my son may not even live through the helicopter ride.

They wheeled him in with a man manually pumping oxygen into his lungs. He was so swollen that he did not look like any preemie I had ever seen before in pictures. He looked plump and dark red. We took one photo and said goodbye and they wheeled him away

There was no room for anyone else in the helicopter, so my husband was then faced with the difficult decision: does he stay with my wife who just had major abdominal surgery or do I go to his son? I of course had no objections to him leaving my side to see our son. He needed one of us there by his side. He needed his daddy to let him know we would not give up on him.

We found out later a friend of ours from church had been at the hospital that same night for her grandchild’s birth. She had heard the helicopter fly off and knew someone was in dire need. She did not know who or why but she prayed for them to get where they were going safely and healthily. It blew our minds to find out she had prayed for our son.

When my husband arrived at the other hospital there were doctors and nurses all over the place. The neonatologist approached him and said, “Well this new synthesized surfactant is working and we put him on an oscillator and he’s doing better but…”

My husband says he stopped hearing everything else. All he needed to know was that for this moment, Nathaniel was alive and doing better. He stayed with Nathaniel for the first six hours of his new life in the Methodist Children's Hospital NICU then came back to be with me. The doctor said Nathaniel may not live through the night, but he did. My hospital let me go the next day due to our situation with my promises that I would take it easy.

Greg and I headed straight to the other hospital to see Nathaniel. We were exhausted in every way and the journey had only just began. The next day I saw Nathaniel again and the neonatologist came to me and said Nathaniel had non-immune hydrops, a condition usually discovered in utero via ultrasound when the fetus has a swollen abdomen (hmmmmm). The neonatologist also said that these babies do not survive past three days.

Nathaniel was still swelling, fluid was beginning to pour around his organs. His blood pressure kept bottoming out. His other organs were not working properly. He was not going to the bathroom. All the signs were there that he would soon pass away.

But on day three, Nathaniel miraculously started releasing urine. The diuretics had not done a thing for him before. Everything changed from there. But then his brain bleed got worse. He ended up with a grade 4 brain bleed on both sides of his brain. The neurologist tried to tell me he may never walk or talk or hear....

Now he is three years old. He has had a lot of difficulties to overcome but he has surely overcome them. He walks, talks, and hears. He also smiles, laughs, dances and adds so much joy to our life and we would surely not be the same without him.

Our #MiracleBoy has come sooooooooo far in the past few months. So much is going on that I felt I should do another update. 1. As of 9:45am on October 24, 2018, Nathaniel is free from his GTube! The new GI Dr agreed with our old one....Nathaniel is doing splendid and he's growing well so he gets to officially move off the GTube. The new GI still wants to see Nathaniel again in January to make sure he's still growing well but we all know he will! No worries there! 2. Nathaniel has been talking and signing and walking independently more and more. He actually enjoys strolls with his pediatric walker now. The front wheels are on swivel and he handles is pretty well. He navigates around things and gets himself out of corners! He even takes independent steps backwards from time to time! He can walk a decent length in his walker...long enough to get to and from his classroom...and speaking of classrooms 3. On November 2, 2018 our special guy will begin classes in the PPCD program in CISD. He'll be in a specialized classroom for children with hearing loss. As of right now he'll be 1 of 2 kids in the class. Another child is expected to join them in December. This will give Nathaniel the opportunity to work with other kids that are just like him but also give him the opportunity to be a part of a classroom and learn so much more and get more one on one attention. We're excited about this but it's also bittersweet....I can't believe my itsy bitsy preemie is ready for school. Thankfully it's only a half day in the mornings. 4. He has some appointments coming up in November to check his brain for a cyst that was recently detected. We are trusting God in this situation 100% Our boy has always been a living and breathing proof of the existence of God. He's a miracle. He's a fighter. He's a gift from God. We are so extremely blessed. I love sharing #OurSpecialJourney with all of you. I love being able to testify about the love of God because of the miracle of our son. I love looking into his big blue eyes and seeing how much love he holds onto and the brightness of life just shining through. I cannot believe how blessed I am to be his mommy. Thank you all for walking this journey with us. #NathanielThrives #Victorious #Victim2Victory #GodsGraceIsSufficient

Posted by Our Special Journey on Wednesday, October 24, 2018

God’s word says nothing is hidden except to be revealed at the right time. I believe Nathaniel’s non- immune hydrops was “hidden” from us until birth because that is how God wanted it. If it had been revealed sooner doctors (not my midwife) or specialists may have told me to terminate the pregnancy or to birth him sooner. It is my firm belief Nathaniel needed those last two weeks in my womb to give him the further development he needed to help him fight his illness.

I owe my son’s life to the amazing doctors and nurses of Guadalupe Regional Medical Center and the amazing transport team that got him where he needed to go fast, Dr. Kirschner for being patient and calm with me, and Dr. Burrus for assisting her so well. Additionally, I want to thank everyone who I unfortunately don’t know their names but every fought to save my son and prayed for us all. Since then, we’ve learned that there are hospitals that would have seen my son in the condition he was in and would have chosen not to save him. It blows my mind. If it had not been for these specific doctors and nurses our son wouldn’t be here. That’s so God! Yes, doctors and nurses saved my son but I KNOW that it was God’s grace that we were placed in the right place at the right time with the right people! I thank God every day that our son was born at a hospital that believed that EVERY LIFE MATTERS.

We coined the hashtag #NathanielWillThrive when his journey began because we were proclaiming he would live. After a few days we decided to proclaim victory and changed it to #NathanielThrives.

In 2016, for Nathaniel’s 1st birthday, we hosted a fundraiser to help Caiden’s Hope (a non-profit organization which helps families with infants in the NICU with expenses for food, travel, and lodging) and we raised over $4k in Nathaniel’s honor.

In 2017, we hosted another fundraiser and raised closer to $5k.

In 2018, we couldn’t host one due to the birth of our 5th child.

Never give up on hope. Always keep in mind that doctors are human too; they don’t know what God has planned. So when you are faced with a life changing diagnosis... remember there is hope after the diagnosis. The doctor’s words don’t have to end a life.

To learn more about Nathaniel’s journey visit his Facebook page here.


The views and opinions expressed in this article are those of the author and do not necessarily reflect the official position of Human Defense Initiative.

Nathaniel's Journey: Hope After A Diagnosis
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