Monday, August 8, 2011

Familiar Environment, Part 2

We sat there, observing the technician who was performing Lincoln's ECHO, trying to figure out if the prognosis was good or bad. Never a good idea...but you can't help it. The tech finished up and the images were sent to the Pediatric Cardiologist. We knew him. It was the same doctor who had diagnosed Savannah. His newest assignment: Review Lincoln's images immediately and get the results to the head of the NICU, who would then deliver the news to us...good or bad.

Lincoln continued to be prepped for transfer as we waited for the ECHO results. Suddenly, the doors to the NICU swung open and the transport team entered. This particular experience was new for us. There were two ambulance drivers, a lead NICU doctor and a lead NICU pediatric nurse, as well as an additional nurse. Then there was the "NICU On Wheels". It was essentially an infant incubator on wheels, decked out with every single piece of medial equipment one could imagine. It was quite the sight. Lincoln was placed inside of it with all kinds of monitoring equipment attached to his tiny body. We had never seen anything like it. After much discussion, we decided not to follow the ambulance to the hospital Lincoln was being transferred to. We wanted to wait for the ECHO report...and we were anxious for the results.

Lincoln was nearly ready for his transfer when the lead NICU doctor came out to speak with the technician. The Cardiologist wanted one more set of pictures of Lincoln's heart...from a very specific angle. Rob and I looked at each other. This couldn't be good. My heart was pounding and my stomach was in knots. One of nurses sensed our tension and fetched us a couple of food trays. He escorted us to the nurses break room, which was within the NICU, keeping us close by, but a few steps away from all of the commotion. We closed the door and ate.

We sat there, inhaling our food and talking. Could we deal with another heart defect? Could we hand off another child for heart surgery? How could the great God we loved with every part of our being possibly ask us to do this - again? And yet, as we set there before the Lord, we were at peace. We knew people were praying for us - it was the only explanation to the peace that we felt. The situation was still scary and unpleasant, yet manageable.

We talked about the people we were meeting. We talked about how we hoped our faith in the Lord was being shown to others through this situation - specifically the hospital staff. We prayed together. We were quiet. We told the Lord if this is what it was going to take to bring even just one more to Him, then ok. We would face another CHD head on. We would embrace whatever was going on within Lincoln's body - a little body that the Lord Himself had created. If he needed to use Lincoln as a disciple for his work, so be it. We didn't like it, but we were willing. There was no doubt it wouldn't be easy, but we had never know the luxury of why start now? We couldn't help but really is the best medicine.

We finished our meal and waited for the ECHO to wrap up once and for all. The images were sent over to the doc - they were exactly what he needed to make a final diagnosis. We prayed over Lincoln, so tiny in that "NICU on Wheels", and off he went. As we watched him leave, we were overcome with every possible emotion. The doors closed and we took a deep breathe - ECHO results were expected within minutes.

The NICU doctor came out. We were certain that something was wrong - certain that a CHD was present. The doctor spoke. Lincoln's heart was PERFECT. There was NOTHING wrong with it. Nothing. Yes, Lincoln had a lung infection and was dependent on oxygen, but - at least for that moment - they believed that was ALL that was wrong. We were speechless. That was it - round one of waiting was DONE.

Even though we knew our boy wasn't out of the woods yet, we had overcome a huge hurdle. Now it was time to tackle the next one. As we left one NICU for another, we hoped our testimony would linger in that room full of nurses and doctors. We prayed that we'd left a mark on each of their hearts and sparked their curiosity as to what gave us the strength to endure such an unpleasant time in our life.

Thursday, August 4, 2011

Familiar Environment, Part 1

We arrived at the NICU. It was certainly busy. There was no doubt Lincoln was a top priority. Before he was transported, they were going to do an ECHO of his heart. We knew this was coming. His blood test had come back abnormal - more than once - and they wanted to ensure his heart was ok. Although they were confident it was, we weren't easy to convince. Savannah already had a heart defect and although Lincoln had been "cleared" of any heart issues at his level two ultrasound, it wasn't necessarily 100% accurate. So it was ECHO time.

There's nothing worse than waiting. As we hung out in the NICU, we realized just how immune we'd become to it all. One of nurses asked how we were doing...she commented that we seemed really calm. It wasn't the first comment that had been made. When I'd arrived earlier that day to sit with Lincoln, they had informed me that they were going to draw Lincoln's blood. They had asked if I wanted to return after they had done so or have them wait until I was done visiting. When I told them I would just sit while they drew it, they seemed surprised. My response - it couldn't be any worse than watching the drainage tubes being pulled from my daughters chest after open heart surgery - the same tubes I had even learned to help drain prior to their removal to keep the fluid moving away from her heart. The nurses had shaken their heads in response, unable to respond verbally. I wasn't trying to be smart or even funny, just stating a fact, as I seated myself to watch and wait.

The beeps, the cords - we could honestly say it didn't phase us much. They all served a purpose and, unfortunately, we knew what most were for and could even re-attach the non-invasive ones if our boy wiggled them off. As we waited for the ECHO to be completed, we struck up conversation. For the nurses and docs who were just coming in, they asked if this was our first and Rob and I looked at one another and smiled. Nope, Lincoln was our fifth. After they picked there jaws up off of the floor, we proceeded to answer the usual questions - sex, name and ages...which we followed up with the various health issues they had been born with.

We watched them. The wheels were turning in their heads. They were curious - how did we handle it? How were we doing - really doing? It's in that moment the door swings open - wide open. We share...everything. The ups, the downs. The good, the bad and the ugly. As nurses and doctors, they see one side of things. But as the parents of these children with quirks, we see the other side. As we wait, we talk. We also get a small glimpse of what God is up too and our grumbling begins to subside, at least a bit...and time passes just a little bit faster.

Monday, August 1, 2011

Empty Arms

I was trying to wrap my head around it, but I couldn't. He didn't have Down syndrome...he was just a chubby baby with a thick neck! His fingers were fine...he had just been a stinker during the Level II Ultrasound and didn't want to open his fist. All the things we'd prepared for - that I, his mother, had prepared for - were not present. Yet he was STILL in the NICU. He was being monitored. It should only be for a bit. I clung to that, knowing way down deep it was likely to be more complicated than that. It always was.

Initially, he was only to be gone a few hours. Those hours came and went. I was moved to the post-partum room. I laid there, waiting for the door open, clinging to the hope that Rob and the nurse would wheel in a little bassinet and I could scoop him up and hold him tight. But Rob entered empty handed. Those "couple of hours" were now "twenty-four hours". Rob asked if he should stay. The answer was "NO!" It was Wednesday - it was Awana night. Jeremy HAD to get his Grand Prix car registered. He would be back later that evening, but in the meantime, I was surrounded by silence. I knew family wanted to be there with me, but I just couldn't bear it. I didn't want to talk about how it would all be "ok". I was ticked and God was gonna hear all about it.

I laid there, beyond impatient. I was fuming. I was angry. I let God have it! How could He do this - AGAIN! For heavens sake, hadn't we been through enough?!?! What more could He possibly want me to learn - us to learn? Why oh why did He have to use MY kids? Wasn't there some other way? I was LIVID! All I had wanted to do was give birth, have that sweet baby boy placed in my arms and go home the next day. Was that really too much too ask?? I was in my most human state. I was being completely and totally selfish and I wanted my son with me - not in some NICU. I knew what I was missing. My arms truly ached to hold him, but they couldn't. It was torture.

Rob returned later that evening and we spoke with one of the members from the NICU. Our sweet, beautiful Lincoln was struggling. He had fluid in his lungs and they were at risk for infection, if there wasn't one already. He was dependent on oxygen. They would take additional chest x-rays and blood work the following morning and proceed from there. The doctor left the room. We sat there. We didn't have to say much to one another. We'd been here before and we were here again. Annoyed was the best word we could use to describe how we felt in that moment.

The following morning arrived. Lincoln wasn't any worse, but he wasn't any better. The day progressed. We knew we'd be there until the following day, so we began to make plans to bring in the whole family for a visit that evening. But it wouldn't happen. The NICU doctor called and informed us they were transferring our sweet boy to another hospital - within just a few hours! We looked at each other...really, God, REALLY???

In all that we'd experienced with our other children, we knew there was a purpose to all this insanity. We could feel the Lord's presence, but we were grumbling - loudly, I might add. We had no desire to be His "tool" in that moment. He knew it, we knew it and I'm certain He was getting a good chuckle as we waited not so patiently for Him to show us the "bigger picture". But He had us where He wanted us and we couldn't exactly leave, so off to the NICU we went to await Lincoln's transfer.

Monday, July 18, 2011


Yup, I've been M.I.A....a "Mama In Action". I love to write. I love to share. I believe in my heart it's why the Lord chose to bless us with a semi-complicated family. Many are hesitant to share and open up and there's nothing wrong in that...especially when looking at what a roller coaster life the family living with special needs can be. It's also why I've been absent from my blog.

I've missed writing - well, the actual opportunity to write. I'm always mind never stops! But we've had a crazy few months. We welcomed babe # 5, and not without complication. We planned too move. We canceled that move. We dove head first into summer with travel and everything else that summer brings with it. My hubby has a new commute. The list could go on and on.

All that said, I've got lots to share. A few have asked when I plan to write regularly again. I'm working on it. The jump from 4 too 5 kiddos was big...HUGE to be completely honest. But we're breathing again and it feels good. The past months have not been without new adventures. Couple new adventures with old and let's just say life is never boring! Ever.

I have much to share and as I reflect on all that's surrounded us these past months - both the heartwarming and the heartbreaking - I know this - God is faithful. His existence in my life and life of my family is more obvious than ever. I've talked with Him, I've argued with Him and I've gotten even closer to Him. My heart is smiling and I'm ready to write.

Sunday, January 9, 2011

Reality Check

Since beginning this blog, my ultimate goal has been to be open and honest about our life as a family with special needs. While I have attempted to keep my wording "friendly", the contents of this entry may turn the stomachs of some who read it. It deals with our recent experience with Dylan and the stomach flu. Having said that, this is a real aspect of our life and, as always, God is at work in my life.

Every now and then, I get reality checks when it comes to Dylan's development - emotionally, physically, mentally and socially. I am fully aware that Dylan ranges anywhere from a three year old to his current age of ten. I rarely think much of this range - it's simply who Dylan is. But this weekend I got a huge glimpse of where he's really at in certain areas. It's been hard to swallow.

On Saturday morning, Dylan, Jeremy and Savannah all awoke with the stomach flu. Gregory had just been through it and it was looking as if he might be the only victim. I was wrong. I woke to hear Dylan wailing in his bedroom. I opened his bedroom door and found him covered from head to toe with vomit and well as his entire bed area and the floor. I soaked in what awaited to be cleaned and am fairly certain I will never be more thankful for our tile floors. Within seconds of discovering Dylan, I heard Jeremy yelling and crying from his bedroom. It was gonna be a long day. I hadn't had a chance to check Savannah but if she hadn't started in yet, it was gonna happen - soon.

I told Dylan to stay put and that I would be right back. I had to get Rob up - who, off course, was still sleeping soundly. Within moments, I was back in Dylan's room. I grabbed one of the many packs of baby wipes in our home and undressed him. I realized I had to get his feet and hands wiped down before I could take him upstairs for a shower, or else we'd be cleaning the carpet as well.

I managed to get him upstairs and handed him off to Rob for a shower. Jeremy was next. Within the hour, we had three sick siblings bathed, dressed and laying on top of blankets on the couch, with towels surrounding them on the floor. Rob collected bedding in trash bags and lined them up to be rinsed out prior to entering the washer. Things had settled, but only for a moment.

I suspected Dylan needed to use the toilet and had Rob take him. I needed to get the laundry started - I had at least seven or more loads to do. They entered the bathroom and Rob helped Dylan undress. Although I wasn't in the bathroom initially, I could hear Dylan throwing up and sensed Rob's patience was being tested. It was time for mommy to intervene. I entered the bathroom with Rob scrambling to find something for Dylan to throw up in, as in that same moment, Dylan had begun to have diarrhea - except he wasn't sitting on the toilet. Rob managed to get him seated on the toilet and I got a bowl placed beneath his mouth and then quickly ushered Rob out of the bathroom.

I knelt beside Dylan, holding the bowl in front of his face. In this moment, even though Dylan is the size of a ten year old, he was really two, maybe three, with how he was able to handle himself mentally and physically. My heart broke for my sweet boy. He was confused with what his body was doing. He was overwhelmed and could not communicate his need to both throw up and use the toilet, even though he can speak fairly clearly. He was weak and tired.

As his mother, I was overwhelmed with a wide variety of emotions. We've made huge progress in regards to toilet training Dylan, but, as I sat in the bathroom, I realized just how far off we are from complete toilet success. My mind drifted to how I had found him that morning. It was obvious that he had thrown up more than once, but Dylan did not grasp that he should go to the bathroom to throw up or poop or find us for help. He just cried.

Obviously, Dylan has Down syndrome. However, I have long suspected he has Autism as well. It is typical for individuals with Down syndrome to have Autistic tendencies, but some do have a medical, dual diagnosis. No, Dylan doesn't have an "official, dual diagnosis", but I know in my heart he likely does. Whether or not we should pursue the "official" title is debatable. Dylan already receives all appropriate services and many of the techniques used with Down syndrome are the same ones used for those with Autism.

Many of Dylan's peers also have Down syndrome and there is no doubt they are all very different in their development. However, many of the areas that Dylan continues to significantly struggle in are areas that many with Downs begin to out grow by his current age of ten. In the research I've done, these areas are more "Autism related" than "Downs related". My experience with Dylan this particular morning was no exception.

After Dylan finished using the toilet and stopped throwing up, he got up. I got him cleaned up, re-dressed and settled back on the couch. Now it was time to go back to the bathroom and begin cleaning it. As I scrubbed the floor, toilet and removed the rugs to be washed, my heart sank and reality hit. Putting Dylan in underwear and sending him to the bathroom completely on his own is still very far off. His ability to handle himself when severely sick is even farther off.

As the morning progressed, I continued to get reality checks. I rinsed out all bedding and clothes and had specifically decided to do Dylan's last. As I began to pull his bedding from the bag and rinsed them, I finally came to the last item - his sheet. It was covered in diarrhea, and honestly, I don't know how it happened, as Dylan was fully clothed when I found him. I looked at Rob and said, "I just can't do it. I don't have it in me to rinse this sheet out....again". Into the trash it went and a trip to store would come later that day. I knew it wouldn't be the last item I'd throw away due to a massive Dylan accident. I always salvaged what I could in situations like this, but I have thrown away numerous clothes, bedding and linen items over the years. He even managed to destroy two playpens by the age of three due to accidents.

I thought of my other children and their development. Jeremy is six and is quickly learning that when he has the stomach flu, his goal is too aim for the bathroom or nearest container. Greg practically potty trained himself at about age three, so he's not far behind, and Savannah is just where I'd expect her be....and this is the same spot where Dylan is, which tears me up.

With each passing day, Dylan grows - sometimes by leaps and bounds, but more often in baby steps. I find myself questioning myself and wonder what more could I be doing - I want to be the best mother for him. I know the Lord chose to place each of my children and I together for a purpose and I ache to see the bigger picture, especially when I reflect on the moments I've described above. But that's not possible. All I can do is push forward and have faith that the pieces will continue to fall into place, just like all the other pieces I've seen put together in the past ten years.

Sunday, January 2, 2011

Three Picture Albums

I imagine he's seated across from me. Between us lay three picture albums. The first is full of pictures showing a boy who is growing and thriving and, in the world's eyes, is perfect. He is a picture of excellent health. It is clear he is mine - his physical features resemble those of his siblings and parents. He is surrounded by love, joy and peace. This boy is the desire of my heart. He is not made fun of by those who live in this world with him. He does well in school - he has favorite subjects, but can pass them all - even those he's not so fond of. He can ride a bike, jump, skip and hop. His fingers hold a pencil without issue and his penmanship is nearly ideal. He eats and drinks and pizza and sweats are always a hit....he is a kid, after all.

The second album show pictures of yet another boy. The life he leads is far different than that of the boy in the first album. His physical features make others take a second glance, but generally not in a positive way. He is often criticized and, while they refrain from saying it aloud, they question whether or not he should have been born. He suffers from frequent colds in the winter. He enjoys school and loves his friends and teachers, but academics are challenging. He spends hours practicing how to hold a pencil, pronouncing words correctly and needs full assistance on the swings...pumping his legs is simply not something he can do yet - and it's hard to say when that day will come. He enjoys mealtime, but it's not without challenge...his protruding tongue pushes the food out, although he works hard to keep it in. There is no doubt that the simplest, day to day activities are a struggle for him. But he is loved and happy. I ask the man before me where his family is, but I am told it is yet too be decided.

I open the third and final album. I flip through it - twice. But the pages are empty. There is not a single picture in the entire album. Confusion overcomes me. I look up and stare at the man seated across from me. As I stare into his eyes, I understand completely. I remember a discussion we had years before - about the little babes that begin to grow within their mothers womb. These mothers are faced with news, but it is unwelcome. These mothers do not know the man seated before me. They are given one-sided information. They are given choices, which may result in empty picture albums. Some of these children are walking on streets of gold, others are bouncing around from home to home, their final destination unknown. I remember what I told him, what I said I was willing to sacrifice if he would give me that child, so that it may know pure love and acceptance, regardless of the "imperfections" that exist.

I look down at my growing belly and place my hand upon it. I stare as I feel the babe within me move about. While I know his over all health is good, I can not yet see the pictures that will fill his album. I know the desires of my heart and so does the man seated before me. I love this child, completely and unconditionally. I have no idea what the future holds for this unborn child - and won't for nearly four more months. As I look to the future - the unknown, I have a choice to make. Will my mind be consumed with "what if"or "your will be done"? There is no doubt it will be a daily struggle - it already has been. But as I lift my eyes from my belly and rest them on his, I am at peace.

On occasion, my eyes drift away and in those moments I am overcome with fear, anger and frustration. I remind myself to place my eyes back on him and the moment I do so, I am once again overwhelmed with his peace. I again feel joy and excitement towards the birth of my unborn son. No, I have no idea which picture album will be added to our family shelf, but I do know that whichever it is, the pictures within in it are perfect. It is a choice I must make daily, but if I take it one day at a time, as difficult as that may be, triumph through him can prevail.

Sunday, December 26, 2010

My Pounding Heart

The day finally arrived. Today we would get a sneak peak of the babe growing in my belly. I was anxious. As I climbed onto the table and felt the jelly squirted onto my belly, I found myself thinking, "Breathe. Just breathe." Rob, on the other hand, could have dozed off on the small couch in the exam room (which made me jealous!)

As the technician began her exam, I found myself relaxing. She was a wonderful tech who enjoyed her job. She was talkative, which made me more comfortable. One of the things I had been particularly nervous about when I had thought about this appointment were the doctors I would see. First off, the ultrasound was being done in the "Genetics Ultrasound Suite" - which was just unnerving. Second, I found out I was being treated as a "high risk pregnancy" - the pregnancy itself wasn't high risk, just the kids I seemed to birth! Third, in the ten years since Dylan's birth, I had met a lot of doctors, many who had hideous bedside manner and were often down right rude and obnoxious. Over the years I have become numb to most of it, but I am pregnant and emotional! The tolerance I have built over the years has become nearly non-existent during this pregnancy and I am constantly being challenged by the Lord to hold my tongue and be Christ-like.

Shortly after the ultrasound began, the perinatologist came in and introduced himself. Once again, I was put at ease. He was a gentle, soft-spoken, friendly individual who seemed to genuinely care about why we were there. As he asked questions about our other children and their diagnosis, it was done in a "non-robotic" manner - always a welcome relief. Sharing our family history can be quite the task!

As the ultrasound progressed, the tech verbalized her frustration that the sweet boy in my belly wouldn't keep his right hand open - he was determined to keep it in a fist. She also voiced that while she had taken a measurement at the neck numerous times, it was consistently measuring "just outside the normal range". My heart began to pound. I was unsure of what the hand-fist issue was, but I knew exactly what an inappropriate measurement at the neck could mean.

Before the ultrasound tech and perinatologist could explain their discussion, they were called out of the room briefly too another ultrasound where further assistance and expertise were needed. While we were alone for just a few, short minutes, Rob asked what my thoughts were. I shared my suspicions and informed him that the neck measurement was generally considered a "soft sign of Down syndrome while in utero", but that clarification was needed in regards to the hand.

When the docs returned, they explained their findings. Overall, the baby looked great - his heart was perfect, as well as all other internal organs. However, as I had suspected, the measurement at the neck was just outside the normal range - one of the seven soft signs of Down syndrome. In addition, our sweet boy had opened his right hand a few times, but did so very quickly, making it difficult to verify their concerns. It appeared that although all of the bones of the right fingers where present and appropriate size, there was a possibility that the little finger and the ring finger were fused together. The perinatologist said that the only way to confirm the Down's would be through an amnio, which he knew we were against. In regards to the hand, it wasn't uncommon for babes at this stage of development to act in this manner, but they did have to inform us that when our boy was born, there was a chance that these two fingers may be fused together with extra skin. If so, we would have to decide whether or not we wanted the fingers separated. It would be a simple procedure, but still something that we may face.

My heart was still pounding as the ultrasound wrapped up, but the pace seemed to be returning to a normal....just at a snail's pace. Rob and I left the office, sharing our thoughts openly and honestly. We were relieved that the anatomy of our boy was healthy. On the other hand, there were still unknowns. Honestly, we joked and laughed. Had we really thought we would go to that appointment and get news that our child was picture perfect? Who were we kidding? We are the Stewart Family and there is always something...or at least the potential of something. It just seemed to be God's way of keeping us dependent on Him. There was no question we were annoyed. Everyone we knew - friends and family - were aware of this appointment. Over and over again they had all said everything would be fine - no way would the Lord put us through more. But here we were....again!

I sighed. I had no desire to explain potential defects. The thought alone overwhelmed and exhausted me. It was actually one of the key reasons why we did not share with immediate family that Savannah might have had DiGeorge syndrome - it was just a maybe and we simply didn't have the emotional stamina to share about something that may or may not be present. Maybe it was selfish of us, but we had needed answers prior to talking about "what if's" - and looking back, I know we made the correct decision. However, this time around, it wouldn't be that simple. We would need to share. Many people were praying specifically for this ultrasound and the things that it would show.

The Lord was clearly asking for our undivided attention and patience. He was challenging our faith and the desires of our human hearts. The days and months to follow would be rocky ones, but once again we had each other. Even more importantly, we were beginning to only see one set of footprints in the sand.