Caleb's City ICU Tour and a New Diagnosis

Our first family photo.

I have been a bit vague about things we have learned about our baby Caleb lately, mainly because there have been a lot of differing opinions. After I had Caleb, we spent 2 days in the hospital and he struggled with hypoglycemia over the next two days. His blood sugar kept plummeting down to 30 and they would tell us to just give him formula, which he hated and would gag and vomit as we bottled it to him (my milk had not come in yet). My friend had just had a baby and pumped for us. We snuck it into the hospital and would syringe it into his mouth as he gobbled it up. Ultimately, this stabilized his blood sugar. Now in hindsight, he would have benefited from some NICU time, but no one even suggested it.

Also, when he was born, there was a big bubble of spinal fluid on his back. This was not something we expected to see since he had fetal repair, but no one said anything about it. No one even suggested we get an MRI or ultrasound of his back or brain. We have since learned that Banner hospitals had no neurosurgeons on call, so Caleb’s care fell through the cracks. This led to a turbulent few weeks.

We brought Caleb home and absolutely delighted him. I couldn’t believe how perfect he was. He was jaundice and was struggling to gain weight so we were at the pediatrician every other day, but this seemed simple to me. After about 4 days home I began having a gut instinct- he was too sleepy, too lethargic and too weak. We would strip him down and take him out in the cold every 2 hours to wake him up to eat and he still wouldn’t wake up. He was like a floppy rag doll. The pediatrician didn’t seem concerned but I know too much about Spina Bifida and I had reason to be worried.

After a visit to the Cardons ER and watching my tiny baby get poked and poked and poked as they couldn’t get an IV or blood for hours, I was beside myself. Finally, he was put on a pulse oximeter and in my arms when I heard the all too familiar red alarms. The medical team came running in to bag him. Was I really seeing this? It’s the wrong kid! This only happens to Miles, not Caleb too. Bryce and I looked at each other with that look. Total defeat.

Caleb was immediately admitted to the pediatric ICU and put on oxygen. I watched him all night as his saturation levels dipped down too low. The next day, he was put under general anesthesia and intubated for a 4 hour brain and spine MRI. For those that are curious, 4 hours is a long time to be under general anesthesia, let alone a 9 day old that was born early. It’s unideal for the developing brain. We had been told the MRI would be 1 hour. I paced the halls waiting for him to return. He vomited all day as he tried to wake up.

A fill-in neurosurgeon came in to read the MRI results to us. Most of it was very familiar from Miles’s readings. Caleb has a severe Arnold Chiari malformation. He has a spinal syrinx the entire length of his spinal cord. The bubble on his back was news though. It wasn’t just spinal fluid. It’s called an “incomplete repair.” Somehow Caleb’s spinal repair had split open inutero and the spinal cord and nerves were bulging out of his back like an unrepaired Spina Bifida child. I have never once heard of this happening to a child who has already undergone fetal surgery.

We were also casually told of some other very serious diagnoses. First, he has Polymicrogyria. This is a condition I had never heard of. The folds of the brain are too small and there are too many. Some children don’t survive childhood. Some live with mental disability and lifelong seizures. The other diagnosis was Heterotopia. That is where brain matter exists in places it shouldn’t. The long term effects can be the same as the Polymicrogyria. We were told not to google it and to consult with a neuropsychologist. These are very serious things to hear on top of some already very serious birth defects.

We were sent home from the PICU with a pulse ox. That night I watched Caleb sating in the 70’s and 80’s and I felt so helpless. I had no oxygen for him and I would watch his little lips turn blue every couple minutes. The next morning I called the pulmonologist with an urgent request for oxygen. He didn’t call me back. I called the pediatrician to request caffeine therapy to boost his brain stem and breath rate.

“I’m very worried Allison. You shouldn’t be doing this all by yourself. Caleb needs a baby doctor. He should be in the NICU.” I knew our pediatrician was right.

Within a couple hours we were being admitted to the Scottsdale Shea NICU in an isolation room since Caleb had already been home. He was on oxygen but still did not seem like a thriving child. After about 3 days, my friend was at the hospital with him so I could go shower. That’s when I got the call that Caleb had tested positive for a UTI and was being emergency transported to Phoenix Children’s Hospital NICU. I rushed back to the hospital to find them attempting IV’s on him. After I watched them miss and blow 5 IV veins and 2 blood draws, they finally did a blood draw out of his artery. I have had this done and it’s incredibly painful. I have never seen a baby scream like that. I put my foot down and said no more IV attempts. So then they gave him two antibiotic shots in his thighs.

As I was in the ambulance taking him to our 4^th hospital in 2 weeks, I was trying to process why all of this was happening over a borderline UTI. No one explained when I asked so I did my own research. The barriers between urine, blood and spinal fluid are very weak in a newborn. An infection can quickly spread and turn into meningitis. They wanted him at a hospital that had neurosurgeons in case they did a spinal tap and Banner still had no neurosurgeons available. Even though our insurance doesn’t cover PCH, we had no choice.

We spent the next 8 days at the PCH NICU, which they are self-proclaimed in “the armpit” of the hospital and they aren’t kidding. The unit was gross. PCH PICU is pristine and I would have much rather been sent to that unit. Caleb was aggressively treated with 4 different IV antibiotics. The night we arrived, it took them 3 more tries to get an IV since Shea had blown so man veins. It was a horrible day. Thankfully, he responded quickly and was able to come off of oxygen (although he still has episodes of desaturations).

One we got home we immediately followed up with our neurosurgeon and he confirmed that Caleb will need another Spina Bifida back repair. He may also need a shunt in his brain soon. The Polymicrogyria and Heterotopia are present but we were told we can worry about that later. My world crumbled as I realized so much of the fetal surgery was done for nothing. Months detached from my family, tremendous pain, tens of thousands of dollars- all to spare my baby from what he will have to go through anyway.

John 10:10 says, “The thief comes to steal, kill and destroy. I come that you may have life and have it abundantly.”

The enemy has been so relentless on my family. He stole precious time with my boys. He killed our hope and he destroyed the people we once were. He won’t let up on us. We have to decide now if we get Caleb’s surgeries in Phoenix or Houston. If Houston, we have to wait several months until we can get new insurance. I don’t know if he has that kind of time. We also don’t know how we can care for Miles when his nursing hours are cut back this month. It feels as though we have to choose between our boys.

Thank God for the second half of that scripture.

Fetal Surgery Week

There were a lot of conversations the night before surgery. I was admitted the day before since the team was anxious about my Diabetes management and wanted to go over everything in detail. I met with several anesthesiologists. Some made me feel comfortable, some made me feel more anxious.

“What if my body is paralyzed but my mind stays awake and I can feel and hear everything throughout the surgery?” I asked the question mostly joking but I had some irrational fears. Expecting to be laughed at, the resident anesthesiologist responded.

“Yes that does occasionally happen where people report that they remember their entire surgery. Anyway, let’s talk about tomorrow.”

“No, I’d like to revisit what you just mentioned…”

I don’t think you can ever feel fully prepared going in to a surgery like this. One where you have been repeatedly told that the recovery is extraordinarily painful and your child may not survive, or you may not survive. One where you are only their 40^th case in the last 6 years because it’s such a rare procedure. Where you are the first insulin dependent diabetic in the world to be getting the surgery so they are going to do things differently than usual. No matter how brave I felt, I didn’t sleep the night before surgery.  

My surgery was delayed a couple hours in the morning because of another neurosurgery. Bryce and my mom were with me and the room seemed quiet and tense. Bryce came over to me and I started crying. I felt like no one was encouraging me or really acknowledging me. He got the picture and painted my nails bright pink. There was a lot of laughter seeing him attempt a manicure. During my manicure, a huge group of people came in to prep me. Bryce and mom had to leave the room so my epidural could be placed. The goal is to insert the epidural catheter before surgery. Toward the end of the surgery, they inject the medicine so when you wake up you feel no pain for the next 48 hours. The doctors kept reminding me that if I feel anything at all when I wake up then there is a problem.

As the doctor was stringing the catheter into my spine, I passed out. I’ve never done that before. Thank goodness a nurse was in front of me to catch me and lay me on the bed. I kept apologizing as I woke up and they assured me it’s pretty common because people have a drop in blood pressure during procedures. It was more of an exciting start than I had hoped for. Everyone was brought back into the room and it seemed like there were 100 people in there. I was given something to relax me and my memories got foggy as I was wheeled down to the OR. I do suddenly have vivid memories of being in the OR as they asked me to move over to an operating table. I lost count of how many people were in the room at that point but I already knew that over 25 people would be there for my surgery. The doctor put a gas mask on me and said I would be asleep soon. I felt very alert. I was looking around the room at taking everything in. It seemed like a minute passed and I grabbed the doctor’s arm. She removed my mask. “Why am I still awake?” I asked. “You will be asleep soon,” she assured me. That’s the last thing I remember.

During fetal surgery, I am placed in a very very deep level of general anesthesia. Not only do they need to put the baby to sleep but my uterus needs to be completely relaxed. My surgery was about 2.5 hours and went well. Caleb’s portion of the surgery was about 25 minutes while most of the time is spent cutting me open, removing my uterus and positioning it, cutting it open to expose Caleb (first he needed to be flipped from his back to his tummy), and eventually piecing my body back together. Caleb was measuring 1 pound 11 ounces the day of the surgery. The team updated Bryce through the ordeal and also text him pictures of the surgery throughout. My blood sugar stayed perfect the entire time.

I woke up in the recovery room in excruciating pain. I don’t remember saying much other than, “Pain, pain.” I remember people running around and the anesthesiologist team coming in to redo my epidural. I have no concept of how long that took but once it was working, I was a happy woman. We weren’t sure why my epidural didn’t work initially. I was told maybe the catheter migrated. I was given high doses of magnesium sulfate to prevent labor. All fetal surgery moms talk about this drug. It makes you feel incredibly hot, nauseous and terrible. It is very similar to having the flu. We kept the room at 55 degrees and it was intolerable to everyone but me.

Here is where the story gets interesting.

Around 1 am, I woke up in a panic. I could feel my epidural rapidly wearing off and all my feeling came back instantly. I began sobbing and Bryce woke up. I can only describe the next 3 hours as a scene out of The Exorcist. Since it was the middle of the night, the fetal team was gone and they suddenly had a fetal surgery patient with no painkillers on board and no working epidural and no orders written. Bryce, my mom and my nurse spent the next few hours trying to get the on call anesthesiologist to redo my epidural but he didn’t seem to believe it wasn’t working. The nurse kept pushing Morphine in my IV which did almost nothing. I could not wish pain like that on anyone. Every single minute felt like an hour. Bryce called a fetal surgeon on his cell phone in the middle of the night which the surgeon did not like, but he asked to speak with me. The second he heard my sobbing, he was giving the anesthesiologist a piece of his mind. I remember begging and pleading, sometimes to Jesus, sometimes to the doctor. I asked them to put me under. After two attempts at redoing the epidural, I was numb again. It was the longest 3 hours of our lives. There is nothing I couldn’t endure after that. Bryce was scheduled to fly home the next morning to be with our boys.

“Please don’t leave me,” I begged him. “I already moved my flight to Friday.”

We all fell asleep and exactly 2 hours later, I woke up to my feeling coming back again. No, this can’t be happening. I called for the nurse and more anesthesiologists came in, continually bolusing my epidural. “You should be paralyzed,” they would say. “Do you need proof?” I would cry hysterically. I’ll stand up and run around this room if you need proof!”

This time, they knew something wasn’t working right and they put me on a drip of Dilauded. I had never heard of this drug before but now I kindly refer to it as “my day on heroine.” It is essentially medical grade heroine and only used in extreme situations for pain. It wasn’t ideal for Caleb, but we had no choice and of course I would accept any relief. I barely remember the next 24 hours and I was hallucinating and could not hold a conversation.

My remaining couple days in the hospital consisted of more pain as I came off the drip, starvation, vomiting, enemas, and attempting to get up for the first time on day 4. My blood pressure ran dangerously low the whole week, around 55/30. It’s from the combination of drugs being given. Trying standing up after 4 days with blood pressure that low is…eventful. I was also not allowed to eat food or drink water for 4 days since the Dialuded was making me sick. If you wanted to see a hangry person, you should have visited room 544. The second they said I could eat, I went straight to a BLT. Also not a smart idea. Broth would have been a better choice.

My amniotic fluid levels were at a 3 (normal is above 10), but this is expected after surgery. I could feel every movement that Caleb made, tenfold. I also could tell he was in pain. He thrashed around like I had never felt before. It was heartbreaking because there was nothing I could do. Doctors seemed happy with our recovery and discharged me on day 5. They don’t want you sitting in the hospital waiting for a blood clot but it did seem early to go home. As I was being wheeled away from my room I pointed out if I were to ever be in this much pain for any other reason, I would be heading TO the hospital not AWAY!

Last pregnancy pic pre surgery

Right before surgery

Waiting to get checked in

Dr. Papanna

Diabetes Talk

Dr. Moise and Dr. Snowise

Final walk through the halls

Netflix and Chill

Next to Miles, I'm the hardest IV stick

Card reading and nail painting

Dr. Fletcher, Neurosurgeon

Dr. Tsao, our favorite

Being sent into the Operating Room

Waiting for a new epidural after surgery

We couldn't get me sats above 80- oxygen time

Painkillers make you smile

We stood up, then immediately back down

First shower, heaven

He hadn't slept in a week

Christina had the same surgery the week before

Jess flew in just to be there

12 Things You CAN Say To A Special Needs Parent

Miles, 12 Months Old

Lists are so cool right now. If an article isn’t in list form, it isn’t worth reading. Therefore I’m creating my own list. A list with a twist. I have read many posts lately on “The 10 Things You Should Never Say to A Special Needs Parent/ Someone Grieving/ Someone With A Limp/ Someone with A Lazy Eye/ Someone Who Expected More On Their Tax Return/ Someone That Got A “C” On Their Spanish Test." You get the idea. These lists put us all in a precarious situation. We could all easily slip and say the forbidden cliché that our Facebook friend specifically told us not to! The nerve of those that are trying to care.

I have been in one of the above stated demographics for the past year or so and I need to point something out. If anybody puts effort into attempting to bring you words of love or wisdom, appreciate them. It’s extremely hard and brave to come up with the best things to say so let’s not shame each other for the effort. Every “Like”, message, text, cliché remark, hug, lunch, flower, tear means someone is feeling your pain. Let’s celebrate how hardships break down barriers and let us see through the nonsense. Your crappy Spanish test could actually make the world a better place.

1. It seems like God has given you a lot to handle and you are doing it beautifully.

There are times in the midst of hard things it feels like God has given you more than you can handle. That’s because He has. He wants you to lean on Him. If you feel yourself about to say “God won’t give you more than you can handle,” try substituting the above line instead.

2. If I am ever in your shoes, I hope that I maintain the joy that you do.

You feel the words bubbling over. You so badly want to say, “I could never do what you are doing.” And of course you mean this from a good place. The truth us, you could handle it and you would. We are all dealt difficult things and it looks different for everyone. If you admire the way someone deals with their circumstance, let them know!

3. Your child is so beautiful. I would love to be educated on their disability.

No need to run, avert your eyes or say, “Look at that poor child.” We are proud of our kids and want to show them off just as you do!  

4. You seem like you have a lot of love to give. You should have more children!

Sometimes when your child has a birth defect or disability, it’s natural to blame yourself. I have done this to myself a million times. It’s a horrible feeling. Once a woman in my home said to me, “I have never seen anyone look as tired as you. You definitely shouldn’t have more children. Your plate is full.” The truth is, I do want more children. I want them to be healthy but I also just love my babies no matter what. Which leads me to #5.

5. Everything is going to be ok. I promise.

I love saying this to people and I love it when they say it to me. Sometimes parents worry a lot. We worry about our current children and the ones we haven’t even had yet! Let’s keep it encouraging, capeesh?

6. Some days are really going to suck. But then most days are going to be filled with joy.

This is my favorite and was said to me by my friend Ashleigh a day after I got my son’s diagnosis. This sums up everything you should ever say to another human. Affirm their pain and then offer hope. No one appreciates it when you brush aside their suffering. Yet there is no need to dwindle. It’s there and real and we should experience it. And then we should choose joy.

7. There is nothing normal about your everyday life but there is a special meaning for your child’s life.

One of the first things my husband said to me when we knew our son would be born with a disability was, “All I wanted is a normal life.” When I shared this deep fear, we often heard, “What is normal anyway?” Well, seeing your child’s heart stop isn’t normal. Go back to the lesson on #6: Affirm then offer hope.

8. That sounds really challenging but I can see the love in your eyes.

I meet people all the time and it comes up in conversation that I have a critically ill son. “I’m so sorry,” is always response.  Hey, it’s a natural response. I say it to people constantly. But honestly I don’t want anyone to feel sad and sorry about my beautiful life.

9. The suffering of children is hard to make sense of.

Ain’t this one the truth! We don’t know why everything happens but we do know God is in charge. Sometimes bad things happen in this world for no good reason because it’s a fallen world. So let’s skip over, “Everything happens for a reason.”

10. I will be at your house at 10 am to bring you lunch/ pick up your kids/ water your plants/ feed your pet alien/ deworm your cat. I won’t take no for an answer.

This one is very important. At my darkest times, I have found myself turning to the same people over and over again for help. It’s because they were adamant. People lovingly say, “Let me know if you need anything,” but articulating your needs is difficult and embarrassing. I recently walked in to my house while my son was in the hospital and my girlfriends were filling my freezer with food, unannounced. They poured me wine and told me to shower. That’s a good friend.

11. *HUG*

There aren’t always words for everything. There is something powerful in the unspoken. A few days after I had my son, I went to church. My friend came to give me a bear hug and I burst into tears. Her hug made me feel safe. We stayed in that embrace for over 5 minutes and we both cried. I didn’t say anything and neither did she. We didn’t need to. There was pain and no words could help. Let’s all hug each other more.

12. You are a Super Mom.

Say this to every mom you know as much as possible! It gives people all sorts of warm fuzzies!

If you have word vomited the wrong thing to someone or your bestie worked hard to formulate the same words you have heard a hundred times, don’t fret! We are all trying and even if it comes out wrong, hypersensitivity just puts well-meaning loved ones on edge. Don’t discourage the conversation by setting strict rules. Is my son handicapped, disabled, impaired, developmentally behind? Yes all of them and none of them. There is no perfect word and these are just words we use to describe a circumstance, not the true human. Lighten up, hug it out, and keep talking.

Miles vs. Life

Everything can change in a moment.

My best friends, Kandace and Jessica, were in town visiting. We had been at the pool and came home to hang out with my sons. As we arrived, we immediately went to Miles and picked him up to take pictures with him. Miles was all smiles.

Pictures with Miles just moments before the incident.

Pictures with Miles just moments before the incident.

While taking photos, Bryce asked me to help him change the car’s oil in the garage. As I walked out, I heard Miles’s pulse oximeter alarming. Miles alarms so frequently that I didn’t think much of it. There was a nurse by his side so I assumed she knew how to handle it. That moment is frozen in time for me. I wish I had walked in sooner.

After hearing the alarm continue for awhile, I walked in the living room to see my friends standing horrified and the nursing bagging Miles. I walked up to see him blue and lifeless. His oxygen levels were at 3% and heart rate was dropping. I remember yelling for someone to call 911 and I ran to the kitchen and dialed myself. My hands were shaking but I knew I was moving quickly. The operator asked several questions. Was he breathing? Where do we live? How old is my son? Is someone performing CPR? I screamed for Bryce to come in and get an oxygen tank and his face changed as he ran in the house. He knew what was happening.

I was transferred to another operator to repeat the questions. I started crying into the phone. “She isn’t bringing him back! Pease hurry!” His sats were at zero now. The nurse kept saying the same thing, “Come on Miles! Come on baby!” She was shaking his unresponsive body. She asked my friends to flick his feet but they were paralyzed at what was unfolding.

I threw the phone to Jessica and took the ambu bag away from the nurse. I squeezed it and felt no resistance. I began chest compressions. I heard Bryce yell, “Check is trach!” That’s when I look down to see his trach dangling around his chest like a necklace. The nurse had been bagging him for about 3 minutes without an airway. She never checked. For a moment, I thought it was too late. I moved into action.

“His trach is out!” I screamed. I grabbed another trach, opened the package, pieced it together and put it in Miles’s neck. My baby’s lips were purple. His eyes were in the back of his head. Life was gone.

My husband was struggling to get the oxygen tank going. He asked for help and his voice was shaking and cracking. I began bagging Miles while I held his trach in place with my other hand. I stopped every so often to do chest compressions. Nothing. I tried again. “Please come back Miles!” I begged him. Nothing.

The visual of my tiny baby. Purple now. Beyond struggling. Given in to defeat. It is burned in my brain forever.

I thought I heard sobs behind my but I never turned from him.

I slowly saw color enter his face. First blue, then white, then pink. I heard the nurse say, “He is coming back up.” I just continued working on him. He began having a seizure or temors from lack of oxygen. His hands were shaking and he stared blankly.

EMS arrived and flooded into the room. At least a dozen of them. They started assessing Miles.

I asked the nurse to put his old trach ties on. She could not do it. I asked an EMT to hold the trach so I could put the ties on. I got them on quickly but as reality was setting in, I saw how much my hands were shaking. As soon as they were on, I saw how loose the nurse had put his trach ties on and I knew that’s why this whole scenario happened.

Miles had color now but still no life to him. His eyes stared blankly. Was he gone too long? How long had it been? I knew he had been without oxygen for almost five minutes. He must have brain damage, I thought.

Bryce came to our side and said in in the sweetest voice, “Hey Miles. Hey Buddy.” Miles turned and looked at him. His eyes had life!

I heard Weston crying. He woke up to the chaos and probably felt terrified. Jessica brought him in our bedroom to calm down.

I felt a pat on my back from the EMT. “You saved him mom.” Another EMT stood in front of me. “Yes you saved him.” She said. I finally let go of the ambu bag and got up. I saw for the first time how many people were in the room. I walked straight to Bryce and cried in his arms.

The paramedics assessed Miles but we all decided not to send him to the ER. He clearly wanted to go to sleep and he ended up sleeping a lot the next 24 hours. Two police officers asked me questions and eventually everyone was gone.

The event has replayed over and over in my head thousands of times. Of course, when I reported it to the nursing company, our nurse blamed us for the event. She said we were poking Miles’s shunt. It is clear she is making excuses because she made a mistake about the trach ties but I don’t blame her. People panic in these scenarios.

I did ask her later why she had the ties on so loose and she said she knew they were too loose but she hadn’t gotten around to tightening them. She said she had a, “fat finger, small baby neck scenario” so she had trouble getting them on.

I am in the process of fighting the state of Arizona about Miles’s nursing hours. They want to cut him from our 112 hours a week, to 54 hours a week. This is the minimum a ventilated child can be given. They want Miles to have minimal care. It’s heartbreaking but I’m not a mom that is afraid to fight the good fight. It’s my full time job right now. Lefebvres VS. The State. Bring it on.

If I Were Being Honest

Many parents of special needs children share this poem by Emily Perl. It’s really encouraging because it gives your path a new feeling and new meaning. It just makes sense and states feelings in a way most of us cannot. We all want our life to be a trip to Italy and when we land in Holland, we have to appreciate the scenery. We have to watch people taking their trips to Italy while we learn to smell the tulips and build an appreciation for Holland. I was ready for the slower pace of Holland. I was ready to give up the dream of Italy. But how on earth did we end up in Haiti? I didn’t read that anywhere in the poem.

Bryce and I have joked about our move to Haiti throughout this process. Joking is how we feel normal. But if I were to be honest with myself, Haiti is how this feels many mornings when I wake up and remember why my son isn’t home with me.

As our plane departed for Italy, it took a detour to Holland. We looked out the airplane window down at the landscape of Holland and thought to ourselves, “Ok, we are fine with this. Let’s stop here and we will love it and never try to leave. We promise.” But the plane flew over Holland and turned south. It kept flying and flying and flying. Where are we going? It’s getting hot. We are getting uncomfortable. Where are we landing? Say what?!? We are in Haiti. Oh hells no. I did NOT buy that ticket.

It’s harder to find the beauty in Haiti. Yeah sure there are beaches, but come on, the storm has taken its toll on the former white sand. The food is good, but it’s too different and gives me a stomach ache. The people are courageous and welcoming, but they have suffering in their eyes. Am I a Haitian now? There is no return flight. Forget Italy, what I would give to have ended up in Holland.

I get to find beauty in the calloused, the broken and scraps of former homes left after the storm. As callouses smooth out, they become tough and resilient. As our stomachs get used to the new tastes, they start to desire the cuisine and find ways to cook the food. As we tear through the roughage, we pick up the pieces of our old homes that meant something to us, and we build new homes. Haiti has guts. It has character. It has #1 bestseller stories. Frankly, Italy and Holland couldn’t last a day in Haiti. 

Whose Side Am I On Anyway?

This has been a fascinating process of heartbreak, struggle, acceptance, peace, joy and fear. And not necessarily in that order. I truly thought I was in a good place. I was ready. Miles is coming. I have had false labor several nights now so the bags are packed and the birth plan is printed.

Yet I started to get more emotional. I felt a lot more stress. I had what I would describe as small panic attacks. I was scared and I wasn’t sure if it was because of Miles’s disability or just because I was having another baby. I went on acting normal and functioning the same as usual, but I was shorter with my husband and had less energy for my son. Something was happening and I just didn’t see it coming.

I ended up picking a fight with Bryce one night. We had been having a lot of tough conversations about a plan to become financially self-sustaining in this seemingly impossible scenario.  All the help was putting Band-Aids on something bigger and the options we began discussing upset me tremendously. Our main option was for me to go back to work full time. Even saying the words made me bawl hysterically, not because I don’t like working (I actually miss it), but because I couldn’t stand the thought of being away from my sons when they need me.

I have read so many blogs of other Spina Bifida parents in this exact same scenario. It’s one of the most expensive life-long birth defects so nothing we are experiencing is abnormal. We went from living life simply and comfortably, to feeling like we are drowning. I believed that the fear of this is what was causing my stress but it wasn’t. Finances have never consumed me and I’m not very materialistic. I don’t care about those things and I’m not afraid to go without. I am just so appreciative to God for the beautiful life and family He has given me. There was something different gripping my heart and Bryce identified it.

I had switched teams.

We clung hard to God when we received Miles’s diagnosis and there was no doubt I could not have gotten through that time on my own. But as months went on and I accepted his disability and the possibility of worst case scenarios, I forgot that I still needed God. I became comfortable and complacent and things were back to normal again. The birth of Miles was still far away enough that I didn’t have to be overly prepared but I was far enough away from the initial news that I had time to accept.

As the approach of his due date came near, the realizations became clearer. My son has a disability. He doesn’t perform well on tests and we aren’t sure what the problem is. I won’t get to hold him when he is born. This is terrifying and I don’t know what our new life will look like. I stopped standing next to God looking at fear and I began standing on fear’s side looking at God from a distance. I had switched sides without even knowing it. We prayed for God to bring us back on His side and the next morning I woke up feeling like a different person. No tears, no anxiety, no distrust.

None of this means that the fear doesn’t still exist. It’s present but I’m no longer on its team. Fear is on the other side of the battle field and I will fight it with fury because it steals joy. Nothing can take joy away from having my son. No amount of money. No diagnosis. No nasty doctor. No discouraging ultrasound. No sacrifice.

I’m back on the team of hope, joy, faith and insurmountable love. I know now that God wasn’t going to let me have Miles until I learned this lesson. 

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." -Deuteronomy 31:6

A Little Patch of Grass

After our surprise hospital stay at 32 weeks pregnant, we have known that Miles does not look very good on Non Stress Tests (NST’s). I have asked many times if there is something else wrong with him and the answers have varied, but mostly the answer is we don’t know. Since then, I am required to get a Biophysical Profile ultrasound twice a week. This ultrasound looks for fine and large motor skills, amniotic fluid levels and he has to practice breathing for 30 seconds in a 30 minute period. At every test, he waits until the 29^th minute to start breathing. Every time I ask God to show us he is healthy and to make him breath if he is actually ok. Every time he has passed all the tests, until today.

At today’s ultrasound, Miles wouldn’t move at all. He wouldn’t breath. The tech was almost violently shaking my abdomen, but still nothing. I wish I could say this surprised me, but nothing does anymore. The doctor decided to follow with an NST which was pretty unnecessary to me since I already knew what would happen. He didn’t do anything during the NST either. Normally, all of the results would send me back to the hospital but there is an overall sense of what’s the point? I need to have these tests redone tomorrow and I have a feeling if they are the same, I will be in the hospital again.

When the medical staff talks about my son, they have a sad, solemn look on their faces and don’t look me in the eye. They use words like “Unresponsive,” “Non Reactive” and “Under Performing.” They say things like “Wake up baby!” None of these results are new or unexpected but today they just affected me differently. The tears flowed easier today and fear gripped my muscles. All my nervous habits have come to the surface. These words are describing a real person. This is a real life. This is my son’s life. I want to believe that he will be ok. Some days I truly believe it and some days I’m just convincing myself.

So many people have graciously and selflessly helped us through this time. There has been emotional and financial support that we have desperately needed. Eventually my parents couldn’t bear that fact that every dime we have and that is given to us, just goes to doctor bills and all fun things have gone out the window.

For a long time I have daydreamed of having a patch of grass in our yard for our kids. My parents paid for us to get this patch of grass but it hasn’t been installed yet. I spend a lot of time staring at our dirt yard, fantasizing about this little piece of life growing in it. I picture getting to watch my boys play in this grass, watching them grow and hosting friends in our yard. I used to imagine a life of jet setting and excitement but now I just daydream of a little piece of grass in my yard. It seems like such a luxury now. Something so simple will mean so much.

Most people won’t understand what this grass will mean to me. It has almost been a little token of hope through this all. When I picture Miles at his healthiest, he is laughing and giggling in the grass and playing with Weston. I have tried to pass the time of anxiety of serving others in whatever way I am capable as I have accepted so much service lately. But in my quiet moments, I stare at this yard and imagine what is to come. 

Just an Ordinary Girl

I had a MOPS (Moms of Preschoolers) meeting today at Scottsdale Bible Church. A fellow mommy beautifully performed one of my favorite Christmas songs by Amy Grant, “Breath of Heaven.” I remember as a young girl, playing this song over and over again every Christmas on a cassette tape. It gives a different perspective on the Christmas story of a frightened young teenage girl that has been told she is going to give birth to the Savior of the world.

Today we were reminded that Mary was just an ordinary, humble girl that loved God. She was not rich or royalty, nor did she have superpowers. She was just a person that God specifically chose to carry out His plan. Parts of her life story we not glamorous at all, but it had significant meaning to the world.

God chose me to carry one of His children. He orchestrated life in a perfect way so I get to be the mother to Miles. My story is not as grand as Mary’s, but I listen to this song differently now and can relate to Mary as a scared, ordinary girl, wondering what is ahead and if I am the right person for the job. In the song, she says:

“Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong”

Every single day, something new terrifies me about what is to come. And yet I feel at peace knowing that God doesn’t expect me to be extraordinary. He already knew all of my imperfections when He picked me for the job. None of this is about how well I do here on earth by mommy standards. It’s about preparing my sons for eternity and teaching them about Christ. It’s about living a biblical life and loving people. That’s really all I need to do. I’m guessing Mary was a great mom to Jesus, but probably not perfect because she was human. And God chose her just the same.

“Breath of Heaven” Amy Grant

I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, You have come
And chosen me now to carry Your Son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven

Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong, help me be, help me

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy

Breath of Heaven, hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven, Breath of Heaven
Breath of Heaven

Keeping Hope Alive

It’s a really hard question to answer. “How are you guys doing?” We get asked every day and I love that people don’t forget that it’s on our minds constantly. Most days we are doing really well. Life has continued on and I’m not at a difficult point in pregnancy. I am 27 weeks along, so for me this means a doctor’s visit about once a week (4 hour visits). I can still chase Weston around and roll over at night and my friends are throwing a baby shower. It’s a fun stage.

But I also tell people it feels like a calm before the storm. Starting in a few weeks I will need to go to the OB 3 times a week and the office is an hour away. I still have to pick more specialists for Miles. Many bills are close to their past due point. And Miles hasn’t been born yet. Attempting to wrap my mind around the pain I will feel when he is taken away from me in his first few hours of life is incomprehensible. Knowing how serious his surgeries are and that there is chance I could never see him again. What if I don’t have any pictures of him? What if I picked the wrong hospital? I try not to spend too much time thinking of these things but they are all just around the corner.

There is a reason God can see the future and we can’t. If we could, maybe we wouldn’t walk the road we are supposed to, knowing that fear is ahead. Maybe we would never turn the corner knowing what is there. God knows our human emotion would keep us from venturing into the unknown and we would stay snuggled in a point of safety and security. But God requires more of us. The fact I even know hard things are around the corner is more than many people know in life. It’s an odd feeling.

A couple weeks ago, Bryce, Weston and I went to Washington to see my family. We had an incredible time enjoying fall- football game, apple picking, stomping on leaves and drinking hot chocolate. My mom’s friends had a little shower for Miles and I felt so excited to have him arrive.

Weston- 18 Months Old. 

Favorite word is "Apple"

26 weeks pregnant with Miles

On our drive back to the airport I received a call from my doctor’s office. I had gotten a genetic test done the week before called the MTHFR. It looks for a certain hereditary mutation in an enzyme that helps people process B vitamins and folic acid. I had tested positive for this mutation. To explain it as best I can, this means that my body cannot properly utilize the mega doses of folic acid I had been taking to prevent Spina Bifida. In fact, folic acid actually exacerbates this problem and makes me more depleted of folic acid. So what is the solution to this? I would have simply needed to take a different form for folate (the natural form of folic acid). I basically just needed a different vitamin.

I flew home alone with Weston after finding this news out. I had gotten the flu and had a high fever and it was one of the worst flights of my life. At first I thought the news of the MTHFR was helpful because it shows me what I can do differently in future pregnancies. But then the anger set in. I had done pre-conceptual counseling before ever getting pregnant to specifically discuss how to prevent Spina Bifida. I was told to take lots of folic acid. I have seen dozens of high risk specialists over the past few years and no one mentioned this simple blood test. In fact, they all told me to take lots of folic acid. This is exactly opposite of what I should have been doing. I felt failed by doctors. This is not a rare condition so why wouldn’t anyone take 3 minutes to mention it? Truthfully, my heart was shattered again. It was easier not knowing why this happened.

It got a little worse after that. I had an OB appointment and ultrasound the next day. Weston got sick and Bryce had to take a day off work to watch him while I went to the appointment. I don’t really like the perinatal OB group I am with but I don’t have the energy to transfer doctors again. On the ultrasound, Miles looked a bit worse than we originally thought. It was confirmed he has a clubbed left foot. This happens because he is already experiencing paralysis in the womb and cannot properly move his legs. The location and size of his lesion (opening in his spine) is larger and higher than we were told. It now opens over 4 vertebrae. The ventricles in his brain are already at full capacity so if they increase even 1 millimeter, he already has hydrocephalus. This happens because the brain is blocking the spinal fluid from flowing around the body correctly so it builds up in the ventricles in the brain. These children need to have shunts put in their brains to drain the fluid.

Of course the delivery of this news was terrible and insensitive and very matter of fact but I have gotten used to that. I called Bryce to tell him but on my way home I ran out of gas on the freeway. It just felt like the enemy was taking his stabs. When I did get home, Bryce looked the most depressed he has been through all of this. He said something that really broke my heart, “I have lost hope.”

When you take someone’s hope away, you have taken everything. You take the sparkle from their eye.

Many of the miracles we had asked God for were already disappointed by these results. Though none of the news was shocking or unexpected, it was enough to knock us back into reality. We were hoping Miles could be a “best case scenario” and now he is falling into the bad scenario category with certain things.

I could just see it in Bryce’s demeanor over the next couple days. He was sadder. We took a night without Weston and went to dinner at Maggiano’s together. We had a great night and talked about Miles the entire time and what we are afraid of and what we think God’s plan is in all of this. It was therapeutic to sit down for a couple hours and just talk. Bryce said it scared him that he could go from a place of happiness to deep sadness so quickly. That’s how this journey is going to be- up and down, then up then down, and up again. We also admitted that initially we had drawn very close to God and gradually we drifted away again and this is a reminder that we need to stay close. It’s in human nature. We draw close to God, walk beside God, then run from God. Only to realize we need to draw close again.

In it all, we just have to keep hope. When Miles is born and his disabilities begin to unfold, we have to hope. When the news is so bad it can’t seem to get worse, we hope. And then we praise God. We praise if the answer to miracles is yes and we praise if they are no. When it feels like there is nothing to praise, we remember what God has done for us and we dig deep into our soul, and we praise. And when we see our beautiful son, perfect in God’s eyes and in ours, we get on our knees and from the bottom of our hearts, we praise.