Tuesday, September 1, 2009

jack's story

My Jack. My special baby, specially made. For those who don’t know Jack’s story, here it is, from a mother’s perspective. I am not a doctor, and don’t pretend to understand much of what we have learned about our little boy, so please pardon my lack of knowledge and my very layperson view. All I do know is how this experience has changed me, how it has changed my family, and how his presence has added more joy and love to our already abundant lives.

At the 21 week ultrasound (we delayed it 3 weeks so Jeremiah could be present, because he was deployed at the 18 week mark), we went in excited and anxious to find out what we were having. After telling us we were having a boy- WOO HOO- the technician started to get a puzzled look on her face and kept going over and over the same spot on my belly.

Her mood seemed to change, and as I continued to rattle off questions, she grew more quiet, more hurried and intent on what she was doing. I immediately felt dread- her expression, in my eyes, was telling. She told us to wait there, she’d be right back. I knew something was wrong. Whether Jeremiah did too, I don’t know. I told him I was worried and felt something was wrong,  but he dismissed it by saying she was probably just going to the bathroom or something. In what would be the first of many, my husband gave me an ‘everything is going to be alright’ pep talk as he squeezed my hand. We waited, for what felt like hours, as I was thinking ‘Lord, please not again.’

Just 12 weeks prior to that, we lost my mom. I was just 8 weeks pregnant. Suddenly, without warning, my mom, my rock, my confidant, my friend, my hero, my idol and role model, and my biggest fan, was gone, and I had not even begun to process her loss. My heart was broken and I questioned whether it would ever be whole again.

My hopeful spirit and positive nature was not what it used to be, and I was truly scared for our baby.

The doctor came in and explained that the technician found something ‘interesting’-- I kid you not, that was his word. I’m thinking, unless you see a bunny or a gumball machine in there, it is NOT interesting. As I sat there, tight lipped and quite huffy over his word choice, he told us that our baby’s stomach was not where it should be, and that some other things looked ‘off’. He said he was not 100% sure, and suggested we go see another technician for a more in-depth look- this was on a Friday afternoon, though, so we had to wait until the following Monday. I walked out confused, devastated, and afraid. We had plans to camp with friends that weekend, and while tears spilled down my cheeks and I told them what happened, they looked on, rather helpless. 

We got the first available appointment, with Tyler and Kaitlin in tow, which later I realized was a bad choice. ~I should interrupt here and say that while I was terrified and worried, I was hopefully optimistic, and I let myself be convinced, swayed by the encouraging words everyone was sharig with me. My husband, my sister, my friends were all telling me that it was probably a mistake (‘You know how the Naval hospital sometimes goofs up’ some said), and assured me that when we went to the next appointment, we would see everything is as it should be with our baby. So I believed them, really because I could not accept the alternative- this pattern of hopeful words convincing me of things I desperately wanted for became a pattern with Jack, I would later learn.

So, we sat through over an hour of tedious scanning, moving, flipping positions, pushing, trying to get this stubborn child to give us a good clean view of what was going on. From the start, our boy was hard-headed. And again, the ultrasound view of our baby- to my eyes, anyway- looked the same as the ultrasounds I had seen for Tyler and Kaiti. Nothing jumped out at me, so it was easy for my head and my heart to believe they were wrong, that this was all some colossal mistake. So, I was not prepared at all for what came next.

Upon finding out about Jack’s condition, there was a lot of confusion. Some thought his heart was incorrectly located- dextrocardia. This was his diagnosis for several weeks (10, actually) and most likely meant that caridac function was affected and he would require heart surgery upon birth. Other neonatal specialists insisted his heart was where it should be, but everything else was a mess. We were told that with this genetic anomaly, typically, there are a lot of other issues that they cannot always identify with an ultrasound. So, for 10 weeks, we had no idea what was going on or what kind of fight our son was involved in.  And I waited- not at all patiently- to be assigned the proper high risk doctor who could treat me. For 10 weeks I was without an OB, but continued to go back and forth, more times than I remember for ultrasounds.

Finally, at about 34 weeks, we got an answer. Our baby, who we chose to name Jack William after Jeremiah’s grandfather and my dad, had something called Situs Ambiguous. His heart was in the correct location, though it was flipped, but his stomach, liver, and other abdominal organs were on the wrong side and malrotated. They were not sure what would happen with our baby until he was born. They told us he would immediately be taken to the NICU, and they would do tests on him and watch him and determine from there whether he needed surgery or anything else. They explained that eating would be an issue, and since there are specific pathways that connect the heart to the stomach and other organs, they weren't sure how our son would handle his own unique pathways......basically, only time would tell.

At one point, during all of this, we were taken into a room and told Jack’s chance of having Down’s Syndrome had dramatically increased, among other things, and though he seemed fine while he was in my womb, once we cut the cord, he would have to survive on his own, and there was a chance we could lose him. They suggested the possibility of an abortion. I am not sure how to describe how I felt, because I was so many things- stunned, offended, hurt, scared, and angry as heck. We quickly told her (Dr T) that abortion, along with testing that could put me into early labor that would certainly result in losing the baby, was absolutely not an option, and this was our baby- end of story. To think of that now still really upsets me. **Ironically, I saw Dr. T recently, while struggling to keep Jack content in my arms, and fought the urge to march up to her and introduce my beautiful, bubbly boy she told me to consider ‘terminating’.** I refused to see Dr. T after that day.

Three weeks before my scheduled c-section, I went in for a routine visit- they removed me from military care and put me with a wonderful high risk team at Baptist Hospital. As my doctor was using the doppler and asking me the normal things- complaints, pain, contractions- a concerned expression spread across her face. I knew that look well. She cranked the volume up on the doppler (what they use to listen to sounds in the womb- namely, the heartbeat), and looks up at me and says, ‘When was the last time you felt him kick?’ I felt nausea rise in my throat and tears spring to my eyes. I glanced over at Tyler and Kaiti, who were sitting in the chair watching Scooby Doo on my ipod, as I felt that familiar fear creep up my spine. They had not heard what she said, thankfully. I remember thinking, Lord, please help me look strong- do not let them see my tears and please spare them from this. --Please understand, this all very much affected them, too. They were aware that Jack might be a little ‘sick’, but only slightly. We prayed for their baby brother every night, spontaneously, so while we played down what was going on, they were aware and they felt worry, too.-- She, my OB, told me Jack’s heart rate was very low, too low, and she wanted to keep me there to do an ultrasound so we could get a good look and see what was happening. I waited, with Tyler and Kaiti at my side, terrified once again. They admitted me overnight and let me go home the next day when they felt his low heart rate would not endanger his life. I had to go back in every 3 days until I had him.

On the day he was born- true to their word- they whisked him away. I had to wait for over a day to hold my precious baby in my arms-- I was NOT prepared for that. My husband, my dad, my friends, my pastor....all were able to see my child, but I could not because of the c-section. God knows, I tried to get to him- I all about threw a fit and forced myself to stand and reopened my stitches to get up to the NICU. Staying in my bed and not touching my child was crippling. I had to see my son, struggling., in his first moments of life, via a digital camera my husband kept bringing down to show me.

And when I finally saw him, my heart broke, and swelled at the same time. I felt so blessed and beyond thrilled to meet my new son and to touch his sweet skin, but was overwhelmed by the tubes and wires and machines hooked up to his tiny, sweet little body. He spent his first week of life there.

But as much as we longed to take him home and rip those wires and tubes out of his body, we knew how fortunate we were. He was one of the healthiest overnight baby's in the NICU. Some of Jack’s neighbors were waiting to undergo open-heart surgery, one little girl’s weight was measured in ounces, and not pounds, and another little girl was born to a drug-addicted mother and was not expected to live through the night. It was heartbreaking. It was the saddest place I had ever been. We heard weeping mothers and whispering nurses and saw exhausted, spent parents pacing the hallways. 

But in the midst of all that despair and unexplainable sadness, we saw baby’s going home. We saw baby's healing, becoming well, thriving, and defying odds. And our baby, despite having complications, was not desperate fighting for his life every moment, like so many were. I remember crying my eyes out when I was dismissed from the hospital and had to leave my son there. I remember coming to the point in my agony where I had no tears left. I was numb.

The next morning, on the drive to the hospital, I remember thinking how bizarre this was, that this was happening. You see, you never imagine that things could go wrong, really. Babies are all around us, pregnant women are glowing amongst us, and in my innocence, despite having had a miscarriage, it never occurred to me that after making it 9 months in my belly, a child could be born and have to fight for his life. And for the first time in my 30 years, I was in awe of the miracle that is life. I will never take for granted how amazing a gift a healthy child is. Never. And that is just the first lesson my sweet son would teach me over time.

That experience is forever written in my heart, reminding me every day how we blessed we are to have Jack home with us now. No matter what the future holds for our son, we know that every day, every moment is a gift, and come what may, our perfectly made son is a constant reminder of His beauty and love. 

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