Wednesday, August 31, 2016

Footprints

There is the saying "walk a mile in their shoes." You all have walked many miles with us this past year. Through the 10,000 miles added to our car as we went through the NICU journey, to the many miles of specialists, therapy, open heart surgery, and various other appiointments. You also traveled with us through the miles that weren't logged as we were essentially home bound with Kaleb's compromised immune system and medical equipment. This first picture was taken August 31st last year as we headed out the door to Tulsa. I had simply taken the picture to show my mom that after five days of bed rest my swelling was down and I could finally wear shoes after weeks of nothing but flip flops that dug into my feet. Little did I know how symbolic this picture was. It represented the starting line of our journey. 


Later that day my feet would walk into the room at the fetal maternal specialist's office to have a 45 minute ultrasound that would show that the blood flow had indeed, sometime between Wednesday afternoon to Monday afternoon, gone from absent to reverse blood flow which now put us on the clock and Kaleb had an unknown amount of time. After being hooked up to a non stress test Dr. Jones came to tell us we could go home back a bag and report to the hospital first thing in the morning. Before he could leave the room we all listened as Kaleb's clear, steady heart beat dropped. We all turned and watched the reading. No one said a word and we didn't have to be told that this changed the plan. As soon as it picked back up with its steady pace we were told labor and delivery would be expecting us and TJ was not to leave to go get our hospital bags as with him already being in distress he might have to be delivered anytime. 

My feet then found themselves walking the hallways of the south entrance to labor and delivery. My feet wanted to slow as it hit me that I no matter what happened I would not be leaving here pregnant. I lovingly put a hand on my stomach as I walked and tried to commit that moment of him still inside me to memory as I didn't know how much longer he would stay that way. 

We were sent to the waiting area to wait as they finished readying a room. Finally after 35 minutes and my feet tapping impatiently I told TJ I was about to lose my mind having no way of knowing how Kaleb was doing. The memory of listening and seeing evidence of his heart rate plummeting kept replaying in my mind. He went to inquire on the progress and was told they were just about ready and sure enough before he could sit back down nurse Amy came to get us. 


Now a year later here I am leaving the house to head to Tulsa. This time to take Kaleb to therapy and celebrate his first birthday with the NICU staff. I will walk the hallways of the hospital that now are very familiar to me. I will see people who a year ago I had never met but have the upmost respect for. The other picture is today. I may look the same, I am even wearing the same shoes, but I am different. 

I am reminded of the poem Footprints in the Sand. Where there were one set instead of two it wasn't that He left us to go through it alone, it was where He had carried us through. If I were to look back at the past year, I would see one set where He carried us and led us through but also in my view there would also be many other sets of footprints right beside and right behind us. Those are the footprints of all of you. Never have I been so sure of God's love and grace as I have been this year. I am also so very thankful for the love and support along the way from the many people who have willingly shared in this journey with us. Thank you. 


Friday, August 26, 2016

August 26th

August 26th, this day has significant meaning to me and my family. A year ago today is when this whole roller coaster ride began. It is hard to believe that it has been a full year now since we first heard the words, “very small preemie,” “heart defect,” “IUGR,” and “Down syndrome.” In some ways I feel as if it were yesterday as I can easily recall even the simplest details of the day as I have played them in my mind so many times. In other ways it feels as if I have lived a lifetime since that day.

For some it may not be the most interesting post I’ve ever written but I’ve told people that at some point I would share the story of that day and the upcoming week. It can be tough as I relive those memories and the feelings that accompany them. It is also very therapeutic as I write them and see the journey we have made it through by His love and grace. So the following are my memories of that day.

On Wednesday, August 26th, TJ and I headed to Tulsa for a routine checkup where I would get more ultrasound pictures and begin scheduling the more frequent visits that mark the third trimester. I was officially 28 weeks along that day. I was dreading drinking the awful drink that every pregnant lady dreads when it's time to test the blood glucose level for gestational diabetes. This visit had originally been scheduled for the previous Wednesday but the doctor had to reschedule so while I got to put off my glucose test one week I was ready to see how our little boy we had decided to name Kaleb was doing.

As we got into Tulsa and drove by Saint Francis South where Kaden had been born we commented that we would be getting admitted there before we knew it and began talking about how fast the pregnancy was going and wondering how labor would go this time. I joked that I had a feeling this one was going to be ornery and I could see him coming early unlike his brother.

 As usual despite our best intentions we had to hurry in so that we would check in on time for appointment. Of course there was a line and even though it was our fault we were cutting it close I became antsy in my game of beat the clock. Only to find out that my doctor had been called out for two deliveries. I was to be seen by the physicians assistant instead. I was fine with that, I liked Megan and it was just a typical visit and ultrasound. It did make me remember the last time I had her for an appointment which was when I came in when I was experiencing my first miscarriage. She had been the one to tell me it wouldn't be a viable pregnancy but I worked now to shake the memory from my mind.

We quickly got called back and led to an exam room. Dr. Rapp was just on his way out for the two deliveries and popped his head in to say hi and that he’d see us in three weeks. After having the lab draw and going back to the exam room the Megan came in to perform my ultrasound. Instead of small talk about Kaleb or the reassurances that everything was looking good, it quickly became apparent something was wrong. It began by her asking my due date as she thought maybe she had the wrong due date. Flashbacks to the last time I saw her as she performed the ultrasound and asked me if I was sure of how far along I should be as it wasn’t measuring up. My heart began to accelerate as she tried to calmly tell me she was going to remeasure him. After performing the various measurements she admitted he was measuring two to three weeks behind his due date.

The baby that had at every appointment measured right on track for his due date was all of a sudden two to three weeks behind. I quickly realized that five weeks ago he measured typical for his due date had not grown very much at all in the five weeks since. I began to fear for my baby as she worked to keep a poker face in place as she explained that she would be taking a look at the blood flow. While she worked to hold the poker face you could tell it wasn’t looking good either. She soon confirmed my fears as she left the room to go call Dr. Rapp and discuss with another doctor in the practice.

She was only gone about five minutes but in those five minutes I had to work to keep it together. I had never been one for panic attacks but I felt as if I was on the verge of panicking and losing control and I tried to will her back to the room and give us some answers. TJ and I both sat in shocked silence and we realized our carefree day had suddenly taken a different tone. When she did appear she didn’t give us many answers except to tell us that we needed to head to Saint Francis hospital and be admitted for monitoring. While I worked to hold my emotions together TJ went into problem solving mode as he hurried to the car already on the phone making arrangements for Kaden who was still in Bartlesville at daycare. I told him I need to go to the restroom before leaving, primarily to give myself a minute to collect myself and gear up for whatever lay ahead. As I made my way out of the restroom Megan was waiting for me at the door. “There’s been a change in plans. Dr. Jones is waiting for you at his office. You are to head straight over there,” she said with tears in her eyes.

We didn’t know what to say during the few miles to the fetal maternal specialist office. The lightheartedness of the afternoon had suddenly been replaced by a fear that gripped both of us. I was trying hard to not think about the text messages that had already dinged on my phone from my mother asking how my appointment had gone.  

We found our way up to our now second appointment of the day. While I filled out paperwork TJ call one of our closest friends, Dalton, and asked him to pick up Kaden and take him to their house. When Dalton asked what was going on I could hear TJ getting choked up and saying, “I can’t talk right now, but pray.”

We were led to an ultrasound room where we had a 35 minute ultrasound. An ultrasound that I couldn’t wait to be over so we could find out what was going on but at the same time didn't want to end because as long as I was getting the ultrasound and I could see him moving and could see his heart beating on the screen I felt that he had to be okay. I stared at his heart watching each beat on the screen wishing I knew what they were looking for. I tried my best to make out each feature and would quickly try to read anything she typed. I ran through in my head the little bit of knowledge that we had been given and wondered what they meant for our baby and our future.

After the ultrasound we were led to a room to await the doctor. We were both tired of waiting for answers. Luckily the doctor quickly came in. He wasted no time with small talk and began by telling us that Kaleb had a heart defect. He believed it to be a full AV canal defect and he would continue to monitor it. That if it were a full AV canal defect it would require open heart surgery. He then went on to say that this meant he had an increased chance of being born with Down syndrome as this type of defect is very common in children with Down syndrome. As if that wasn't enough to try and take in telling us that we would be having a very small preemie. He then began to throw out terms such as blood flow and IUGR. He explained the difference between absent blood flow and reverse blood flow. I was having absent blood flow IUGR which meant that blood was not flowing through the umbilical cord as it should so it wasn’t allowing him to grow and develop. We would be monitoring to see if it became reverse blood flow which is what Tulsa Women’s Health Care believed was happening when they sent me over. Reverse blood flow would put us on the clock as it would cause fetal death within a number of days.

We would be having a preemie, it was now just a matter of when. It was a balancing act of when it was more beneficial to stay in the womb vs when it became to detrimental. I was now to be doing what I could to help develop him as much as possible before they had to take him. My job at that moment on was to lay on either side to allow optimal blood flow. Only getting up for bathroom breaks and a shower a day. I would have to be monitored twice a week until they determined it was time to deliver. I was to be monitored this frequent due to the blood flow that could turn to reverse blood flow therefore putting us on the clock as well as the fact that he was already so far behind now and by their best measurements was only appearing to weigh 1lb 13oz. I was told that I would get the first round of a two shot set of steroids that day to try to help give him a better chance. We were to return the next day to take the MaterniT21 test and get the second steroid shot.

We headed home in a state of shock. Gone was the lighthearted conversation that had filled the car on the way to Tulsa. Gone was the life we had known before. It seemed ironic that just hours before we had been guessing at when Kaleb would decide to make his appearance. Now we were simply hoping we would take home a baby at the end of this.

In truth we still didn’t feel as if we had a good grasp of what was going on. All of a sudden many new medical terms had been hurled our way and we couldn’t yet grasp their meaning or significance. We continued to drive back home to Bartlesville and to go pick up our two year old. With not knowing what the future held for Kaleb I was suddenly very ready to hold Kaden in my arms. I felt I needed to physically hold one at least one of my sons and feel his closeness, to see that he was safe. As we drove we would go back and forth between speechless, nervous chatter, and preparing a plan of attack.

We pulled into our close friends, Courtney and Dalton’s drive way where Kaden was busy playing with their son, Carter. It was a relieve knowing that while our world felt like it had been rocked today that it had yet to affect Kaden and to him it was simply a chance to go to Carter’s hours to play. Of course there was no escaping Dalton and Courtney who still had no idea what was going on.
I tried to sort out my thoughts and figure out how to explain what was going on when I still didn’t quite understand. I explained that with the type of heart defect that he had that it was common with children with Down syndrome so that meant he had a higher chance of having Down syndrome. While that was part of today’s story the more pressing matter was the blood flow. When TJ and Dalton got back with food everyone seemed to remember I was now to be doing my part of developing Kaleb and was to be laying on my side. So it began, the independent always busy person had to let that go and be still in hopes that I was doing everything in my power to give Kaleb a fighting chance. 

Thursday, August 18, 2016

The Difference a Year Makes

I stood in church Sunday morning holding Kaleb as the worship team began. I stood there singing along with them as he laid his head against my chest and placed his little hand in my own. I couldn't believe how full my heart was, how in love I was with this little boy in my arms. While I was savoring the moment TJ  leaned over to me and motioned to one of the worship leaders and asked, "is she the one?" I knew exactly what he was asking and I looked. Sure enough she was. I was suddenly transported back to another church service, one that happened eleven months ago. 

A week and a half after having Kaleb we went to church before heading to the NICU. While there this lady began leading worship. I became angry. I had already held myself together as I passed pregnant women or mothers with their little babies. Then the worship team began playing. I had watched this lady as she began to sing. That is when the anger and frustration hit. I could just picture her, this beautiful lady with her beautiful life. As I said in a previous post, I could picture her beautiful family in their beautiful house which held their beautiful family pictures. My eyes had filled with tears as I experienced this anger. That was suppose to be my life. Now 11 months later my eyes filled with tears as I remembered that moment in time and my feelings that had accompanied that moment. Now here I was, once again listening to this beautiful lady with her beautiful voice but this time it was different, I was different. 

I always love listening to my coworker, Dr. Josh McNall, but that day he couldn't have brought a more perfectly timed message. I wouldn't ever do it justice if I were to try and talk about and summarize it all. In short he spoke about not wasting our trials. That has been my prayer the past year. While I might not understand why this is the story that God has given me, my prayer is that he use this, that he use me, to bring Him glory. 

Then Josh went to his next slide which read, "we finish well when we learn to LOVE and LIVE WITHIN the story God has given us, instead of the one we might have written." I once again thought back to the lady on the worship team and the difference a year can make. I hadn't even noticed her today as I worshipped,  when it was not quite a year ago that I had been beyond angry and hurt as I listened to her. I couldn't believe that God had completely changed the story I had penciled in for my life. Oh how I had desperately wanted to cling to the life I had planned. As I have said before, the past year has been a daily battle and has served as a reminder for me to let go. To let go of my sense of control, to let go of my plan for my life. This year has included hospitalizations, surgeries, team of doctors, home medical equipment, countless doctor appointments, and extra chromosomes. Through all of that I have learned there is freedom in the letting go. I have learned how limiting my story was. He has written a story that definitely has much more trials and heartache than I would ever willingly include. However, he also includes more possibilities, hope, and overwhelming love than I could ever imagine and therefore could not have written on my own. He has included many supporting characters within the story. I couldn't begin to name the individuals who have leant a helping hand, an ear to listen, or shoulder to cry on. So many have played a part to us being where we are today. I think of each meal provided, each gas card, all of the notes/cards/messages of encouragement, and all of the prayers that have been said for our family. Even the lady singing worship who has no idea the role she has played in all of this. 

Kaleb's heart might have been the one to have open heart surgery to correct his AVSD, but it was my heart that has been transformed this year. Kaleb may wear the visible scar from his procedure but my goal is that my life and my actions shows the evidence of mine. 

As we draw to the year anniversary of this crazy story rewrite my anger is gone. It has been replaced with the love I have for my family. Far from perfect and not what many would consider beautiful. My family and life story are beautiful. So I will sit in my house with my beautiful family surrounded by our beautiful family pictures that display a life story far from what I could have imagined and written for myself. 


"And not a tear is wasted, in time you'll understand. I'm making beauty from the ashes, your life is in my hands." -Just Be Held by Casting Crowns

"This is my story, this is my song. Praising my Savior all the day long." -Blessed Assurance