Jet's Story

Dear Family and Friends,

I was just thinking about how it was a year ago Christmas Eve that we found out our little "doodlebug" was a little boy! And how just 1 week later we were told our little boy might have a birth defect known as neuro-tube defect - or Spina Bifida. Since then it has been quite a journey. Thankfully, through faith, family and friends we have made it through some tough times. I created the blog "Our Little Miracle" soon after hearing about Jet's diagnosis and through the blogging world we have made so many new friends and been reacquainted with old ones. :) Which is what brings me to introduce this new page - "Jet's Story" - to our blog list. I wanted to tell Jet's story for all of our friends (new and old) who are only recently meeting Jet or just don't really know the details. So hear it is.... Jet's Story.

The Excitement

In the days after finding our that we were having a boy, David and I were in planning mode. When do we tell everyone the name we've picked out? How do we decorate the nursery? Where are we going to put the pack n' play? Should we get a bigger car? lol EVERYTHING that goes through your mind after moments like this when you feel another wave of "we are REALLY having a baby!" wash over you. Everything was so exciting! Everything was perfect. It never crossed our minds that it wasn't.

The Unexpected

A week or so later my doctor called to say my 16week blood work had come back with some abnormalities. It could mean nothing...or it could mean an early detection of neuro-tube defect with the baby. I remember where I was. How it felt. My heart racing. My legs suddenly weak. My head fuzzy and yet desperately trying to concentrate on every word the doctor said. Feeling hopeful yet horrified. Adrenaline coursing. Retelling it rapidly to my mom who was with me then calling David to tell him what I was told. (It turns out I wasn't told that much at all.. these 5 points were all too simple.) 1) That neuro-tube defect was a hole in the spine where the spinal cord (or tube) never fused together. 2) It could be closed up in surgery after his birth. 3)The skin itself may be covering it or it could be left open and exposed. 4) He/She may have sport restrictions like no football or gymnastics. 5) It could be nothing.

We were scheduled by my doctor to go see a perinatologist for an ultrasound to check things out. Over the next week I was told by numerous people that they had gone through the same exact thing. Don't worry. It's is all going to be fine. It's just a precaution. I'm sure it will be nothing.

The Shock

It wasn't nothing. When the doctor came in for the ultrasound I was still telling myself it was all going to be fine. David and I loved seeing my baby again on ultrasound. He was wiggling. He was precious. He was perfect. The nurse had made small talk during her initial ultrasound before the doctor came in and I was feeling pretty calm. When the doctor came in he went silently over my stomach over and over for what felt like an hour. I was still thinking it was all okay when he said "I need to speak with you both in my office. I'm afraid I have bad news." My heart plummeted. What was wrong with my baby? Did he have neuro-tube defect? I tried to adjust to that thought - "surgery after birth would fix it - so maybe he wouldn't play football but we're not set on things like that anyway. He can do whatever interests him." Once in the doctor's office we sat next to each other across from his desk. I remember how shaky I was. How cold my hands were as David tried to hold them. How anxious I felt that the doctor wasn't really looking at me. How I was surpised to see him almost awkwardly smile in discomfort as he said "I've really never seen anything like this before. I'm afraid this is really bad for baby." I was shocked. Bad for baby? Can't they fix it? What's going on? He went on to say that the ultrasound showed a large opening at the base of the neck where the spinal cord connects to the brain. The cord was split like a Y and didn't connect at the base of the skull. He showed us the pictures. It was easy to see it looked wrong. He compared the spinal cord to railroad tracks - and showed how all the spinal vertebrae were connected like tracks - close together- then the tracks split off in two directions at the top. I could see it. I did see it. What did it mean?

Devastation

I will never forget how it felt to hear what the doctor said next. With "very bad for baby" still ringing in my ears I listened as the doctor told us how rare this was. How he had never seen a case like this. How there was very little research to show how something like this would turn out. How the opening is usually much farther down on the spine - at the tailbone ideally. How an opening in this location could mean the worst. Loss of the most basic functions - walking, talking, eating unassisted - and more crucial things - breathing, heart pumping on it's own...life sustaining things...all things that your brain tells your body to do - through your spinal cord - and our baby's spinal cord is split - most likely unable to deliver messages - and there is no way to know which messages until birth - there is no way of knowing how much assistance our son would need to live - and even then...

"the baby may not survive the birth. In the womb it is basically on 'life support.' It is possible the baby will not be compatible with life."

Not compatible with life.

This life inside me. My baby. My angel boy. I just saw him. I saw him moving. I've heard his heart beat. I've seen his fingers and toes. He is alive. How can he not be compatible with life? How can this be happening to me? How can this happen to him? How is this HAPPENING?!! I felt numb. Like I wasn't really there. Thoughts of "maybe he can't play football" echoed in my mind then flew out the window. This "fixable" thing was becoming a unthinkable tragedy. This cannot be happening. This is not what I was told. I wanted to leave. I heard the doctor begin to tell us about how we need to make the decision wether or not to terminate the pregnancy soon. Terminate? HOW CAN HE SAY THAT TO ME! WHY IS HE DOING THIS?! THIS IS MY BABY!

I saw David shake his hand and usher me out the door. As we left I saw there were baby pictures all over the wall. Smiling babies in birth announcements and christmas cards. Boys and girls. Twins and siblings. Sleeping. Smiling. Sweet little babies. My mind was screaming. Oh God where are you? What is happening? How could this happen?

Once in the parking lot I reached for the phone in my pocket to dial my mom and tell her what's happening. I hear her say hello - I start to talk and nothing comes out. I hear sobbing and I realize it's me. I can't breathe. I can't think. I can't stop.

David took the phone. We started driving.

It just so happened I had an appt. at my OBGYN scheduled right after this appointment. Go to another doctor now? It was the last thing I wanted to do. And yet I was desperate for some normalcy- for a doctor to tell me something different. Something better. We went in to see my regular Dr. and she asked how it went. How it went. How do I begin to retell this. It just happened 2 seconds ago and I have to retell it? It was torture. I kept thinking I shouldn't be here. I never expect this. I wasn't ready for this. She teared up at the news and I felt my heart break all over again. And when she asked us about terminating I felt as if I was being ripped apart. Is that what we are supposed to do?! Why is everyone asking us to think about this!?

We left. On the way home I saw David start to cry. I was numb again. What were we going to do. How were we going to get through this. How are we going to ever be okay. I am never going to be okay.

Cope

That night was the worst night of my life. And also the most life-changing. My family and friends rallied around us in support. We received hugs, calls, prayers and food. I retold the days events so many times I felt like it had happened years ago -or maybe it was all a bad dream. I was thankful for the support. Exhausted from the crying. Aching from the pain. Desperate for some answers. I've never felt so helpless. So confused. So alone - and yet so aware of God's power, presence and peace. Just when I felt like I was going to suffocate I felt a peace wash over me that I immediately knew was God helping me cope. And that is what we did. Cope. I prayed all night for healing of my baby. For a miracle. Please God - fix this - only You can. It was a roller-coaster of feeling so low I would never recover and then feeling unexplainably hopeful that it would be okay. God was with us. He held us up when everything around us was crashing down. The next day we had a follow-up doctors visit. A second opinion the other doctor set up with another perinatologist in the same practice but a different office. I didn't want to go and hear the same horrible words out of another doctor's mouth. But there was the prayer that something would change. The prayer for a better prognosis. The prayer for hope.

The prayer for a miracle.

Answered Prayer

The next day we went to the doctor feeling 100 years older and still more than a little lost for how we were supposed to feel or act. I had received a phone call from the perinatologist that morning which to this day confuses me. He called to say he had spoken with our OBGYN and he was afraid we had too negative of an impression from our meeting - that he felt we should wait for the second opinion before becoming too disheartened. WHAT!? I was so confused. How could we not be heartbroken by what he showed us? I didn't know what he was trying to do but I said "ok" and hung up the phone. I was just going through the motions at that point and couldn't really try to figure out the cryptic conversation. When we got to the hospital the nurse began the ultrasound. I was unprepared for the surge of emotion I would feel. I saw my little boy on the screen again but with a heaviness in my heart. It was almost more than I could take seeing him there - not knowing whether not I would ever get to hold him - still hearing the doctors words about terminating. Tears welled up in my eyes as the nurse (unaware of our situation) went on an on about "here's his toes" and "he's a little wiggle worm" and so on. I was coming unglued. This was too much for anyone to go through and to this day I would not wish that feeling on anyone (although I know many who have gone through it.) The doctor finally came in, introduced himself and without blinking said "the neck is fine". That's it. "The neck is fine." I just stared at him. What did that mean? How could the neck be fine? The doctor yesterday told us the spina bifida was in the neck. I saw it on the ultrasound. The doctor had said it was "very bad for baby." This doctor wasn't making sense. I had no words. This doctor obviously knew why we were there and what we had been told - so in classic doctor language he was telling us that what we had thought yesterday was not actually the case. He looked expectantly at me as if to say "that's all. see ya later." But after some stuttered confusion on my part he continued to say how the second ultrasound showed the opening was lower on the spine (the way it typically is) and that it just didn't show up on the ultrasound very well yesterday. He continued to "clarify" and say that the doctor yesterday "wasn't sure" of what he saw and that was why he sent us here today for a second opinion. You could have knocked me over with a feather. I was incredulous. I was stunned. What did this mean? How did this happen? The doctor "wasn't sure"?!?! That is NOT what we were told! We were told horrible news. Devastating news about a rare very concerning case of SB. What about the ultrasound pictures? The doctor explained it away as a "poor quality of machine". The machine in this hospital is much better. Then why in the world did they send us there for an ultrasound if it wasn't a good machine?! It didn't make any sense. I can still remember looking at him as if he had grown 3 heads. I'm sure my doubt and confusion was written all over my face. He assured me that this case of SB was normal, a significant opening but low enough down that he would be fine. It was normal. It was typical. He may have some issues with lower leg movement or muscle development (as is common-place in SB) but he would definitely SURVIVE! He said we should meet with a neurosurgeon for more details about his chances walking, etc. but at that moment I didn't care. My baby was going to LIVE! Although now I look back with frustration - the fear and sadness we went through - the heartbreak that turned out to be "a bad ultrasound" I cannot be angry. Because even then, deep down I knew what happened. Our baby's complete turn-around wasn't the result of uncertainty or unclear ultrasound or a "bad machine." Our baby was healed. Our baby was saved. Our baby was an answer to prayer. The MIRACLE we prayed for.

Our Little Miracle

Over the next 4 months we had regular ultrasounds to check on our sweet baby. Each one was an answer to prayer as he continued to grow and develop normal and healthy and right on track! At one visit I remember the doctor saying "he looks so good...it's almost spooky." Odd choice of words - yes - but we were so thrilled that we would overlook any quirky remarks. lol. Our boy was strong. He kicked his legs (a major good sign) and had no sign of real hydrocephalous yet (fluid on the brain that often goes hand in hand with SB). It was beyond amazing. Yes we still had times of worry. There were still so many unknowns. And through it all you can't help but want NOTHING to be wrong with your baby - you want so much for them to be whole and healthy and thriving with nothing holding them back. And with something like this you have to deal with the reality that there will be hardships and setbacks and roadblocks in your child's life. But then again...when is there not?

On May 26th 2009 God brought Our Little Miracle into the world. Jet Montgomery Penny was born at 8:10am by c-section (so as not to risk any injury to his exposed spine) weighing 7lbs 1oz and 19" long. His first cries brought joy to my heart and tears to my eyes. He was beautiful. He was finally here! And the most amazing part was...he was perfect after all.

The Journey

I got to hold his little hand (while we rested in separate beds in the recovery room) and kiss his warm forehead before they wheeled him off to surgery in another hospital. His daddy went with him so I was happy (almost). :) Jet's back closure surgery was very successful and after 10 days in the NICU and 1 day on a regular floor we brought our little boy home. We had to catheterize him for about a month and a half (because he was not emptying his bladder on his own - common in SB) but suddenly he starting to void on his own so now we are cath free! At 6 months old Jet had a shunt put in to drain the fluid that had slowly collected on his brain since his birth (hydrocephalous). This surgery is almost always necessary for children with SB and is usually needed at birth or soon after. The fluid that leaked out of the spine while the baby is in utero is now collecting on the brain. This can cause problems if left alone so they put in a tube (shunt) to drain the fluid internally into the body to be absorbed. For a while Jet seemed like he may not need one. But eventually he did. Although we were disappointed that Jet had to have this surgery we had avoided for so long - we were thankful that we had 6 months to prepare and adjust and enjoy. And part of me was glad that at 6 months he was a little bigger than a newborn (lol. "little bigger"!? All 20lbs of him!). Since then Jet has continued to be amazing! He has great leg movement and we are told he will walk unassisted. :) (Praise GOD for HIS healing!) He has the shunt to help keep fluid off his brain (Praise GOD for today's medical treatments). And he has a neurogenic bladder (weak, small bladder that empties constantly) that we will continue to watch with ultrasounds and deal with potty-training with a whole new approach I'm sure. :) For now we are glad his doesn't have to be cathed. Other than these things (of which no one else would know by looking at him) Jet is a normal, healthy, happy boy who loves to smile and make everyone who sees him fall in love with his blue-gray eyes and chubby cheeks. (haha)

So that is Jet's Story. It is one of love and hope and surviving what you never thought you could. Of trust and tears and family and friends. Of letting go and letting God. And of course...

believing in Miracles.

Here are some pictures chronologically documenting those first few days.

After being cleaned up in the NICU at the hospital he was born in - Jet was transported in a type of incubator so he could travel in an ambulance to the hospital where his surgery would be performed. David went with him - I had to stay in recovery at the hospital for 3 days before I could travel to see him. They brought him to my room before they left. He was so cute and snuggled in there. It was really hard to not be able to go with him or hold him but that was something I was prepared for.

Here is what his incision and staples looked like. I don't think this is the typical incision - the "y" shape of Jet's incision was necessary because of the size of his opening. The opening in his back was pretty large and there wasn't enough baby skin to just pull it together in a straight line. Therefore the surgeon had to make this "y" shape to pull the skin closed. It was hard to look at. The incision is much bigger than the opening originally was but in order to compensate this is what was needed. Pretty harsh on such a tiny body. But I was just happy to see he was comfortable and resting and eating. He took a bottle really well. And I was able to try breastfeeding 5 days later when I was released from the hospital where I was. He did really well! They laid him on a pillow on his tummy and he seemed to know what to do. It was still pretty awkward that way so feeding him a bottle was easier until we could turn him on his side and back without worry.

My little boy had to stay on his tummy for a while to let his surgery site heal. They moved him to his side for baths to clean his tummy. Since opening was large the healing time was longer. He slept most of the time which brought me peace. We couldn't stay overnight at the NICU (unless we wanted to sleep in a chair) but we were allowed to stay all day if we wanted. :) We did. But I did have to rest sometimes because of the c-section I was still in pain a lot.

Feeding him a bottle was the best thing in the world! Just to hold him on pillow was never enough. When we finally got to pick him up and hold him normally was amazing! It really makes the simple things sweeter when you don't get them at first.

Here is his incision beginning to heal - it got very pink but that is the skin healing together. It looked better and better everyday. :) Those little things on his legs were little splints to help his feet keep developing in good shape. He's got adorable feet. :) At around 5 months he went down to one splint on his right foot. The purpose of the splint was purely to help his feet grow straight and not curve or anything. He only wore it at bedtime. We had to replace it as he grew but it never seemed to bother him. At around 9 months he didn't need it anymore!

Flash forward 8 months...

Here is his scar after it healed completly. He had his stables out at 6 weeks and I think he was about 2 months or so when the scabs totally healed leaving nothing but pink scar tissue, but I took this picture at 9 months.

Okay....rewind...:)

Holding him in a cuddly blanket instead of a pillow for the first time. :)

Bringing him home!

Sleeping in his little basinet. Such a beautiful sight.

Although we know we are just beginning - things have been wonderful so far, and we look forward to the journey ahead. :)

Jet at 6 months.

Jet at 1 year.

Not standing on his own yet...but I think I'll hold his hand even when he does. :)