I realize this is long overdue, and for that, I apologize. I thought our lives were crazy and hectic before – boy was I wrong. Where do I start? Maybe from the beginning…
Shawna was admitted to the hospital last Tuesday night (March 8). The goal was to get situated and get her started with the cervidil to promote dilation and get things ready to induce labor Wednesday morning. That process was fairly simple overall and ironically has been close to the most painful thing (physically) in this whole process for Shawna. She was uncomfortable and a bit anxious that night and did not get any real sleep. I, on the other hand, was privileged to be without cot or bed and slept on the window seat “bed.” Man would I like to meet the person whom invented such bed for people no more than five and half foot tall…and sock him right in the nose. I was fortunate to sleep about three to four hours.
Bright and early Wednesday morning (March 9), Dr. Carrasco came in and started checking Shawna’s progress. She had only dilated to 2 cm by this time and our son was nowhere near the birth canal. They began her pitocin drip, and we hung out and watched TV as family and friends gently trickled in and out throughout the morning. It was about as pleasant as waiting can be. Just before lunch, Dr. Carrasco had checked things again and really started leaning toward a c-section due to all of the excess fluid and potential for the umbilical cord prolapsing. For many reasons, Shawna did not want a c-section, so we bought some more time and continued waiting.
By 2 pm Wednesday, c-section became the only realistic option. Until now, reality wasn’t real. Oxymoron, I know. The gravity of this decision and the uncertainty of what we faced hit me like a Mack truck. We prepared our minds and hearts as much as possible, said a prayer, and away we went. By this point, we had a small army of followers outside who saw us into the operating room. Shawna was wheeled back by a team of doctors and nurses and the NICU team joined as well. Meanwhile, I’m stuck just outside the OR sitting on the “dad” chair feeling awfully anxious. They called me in – game time.
I’m escorted in and shown where to sit. But of course before sitting, I see my wife’s stomach split wide open with several hands doing work inside. Umm, check please. If it wasn’t real before, it certainly was then. Within a matter of minutes, I was instructed to grab the camera. With not a second to spare, I turn the video contraption on (note to self – use brand new camera before entering OR). I captured my son being extracted from my wife’s stomach and his umbilical cord being snipped. It was exactly 3 pm. The first thing that crossed my mind was, “Should I really have eaten the cafeteria pizza at lunch?” He was whisked around to the NICU table where they began cleaning and de-funking my child, whose name was still to be decided.
This, my friends, is where our somewhat light-hearted story makes a 90-degree turn into oncoming traffic - where we’ve since been clipped by every moving thing in sight. You’re reading this now, so you’re clearly aware of the issues facing us before this day. We knew problems were more than probable. Seeing my son for the first time was simultaneously the most amazing and terrifying thing I’ve experienced. From the eyebrows down, he is the most beautiful and perfect child we could expect. From the eyebrows back, terror constricts our hearts and minds. Please don’t mistake, he is still magnificently beautiful, but what we only knew as the word “microcephaly” illustrated itself on our miraculous life gift.
The issues with his head and brain stared straight at me. It was something neither eyes nor heart can truly be prepared to witness. To spare some time and detail, I’ll just say that his skull is somewhat sunken where it should protrude, and the skin/scalp on top of his head is wrinkled from not being filled properly. It deeply hurt me. Around the time it began sinking in, he was ready to be taken back to the NICU unit, and Shawna was still lying on the operating table being put back together. I had to quickly make the decision to follow my son to NICU. On a quick side note, I nearly stepped backward onto a table containing a little blue bucket. What did said bucket contain? My wife’s placenta and “stuff.” Eww.
I spent 10-15 minutes in the NICU room before the neonatologist took me to the side and again had the discussion with me about care, intervention, and so on. I asked to see Shawna, and as I was walked through the waiting area, I was greeted with what appeared to be 40-50 people anxiously awaiting news. I couldn’t muster anything but silence and tears. Our hopes and prayers had been built to such a level; I simply wasn’t able to maintain that level of expectation. I was carrying something I’m not equipped to carry – man is not equipped to carry. When I got to Shawna in recovery, she was pleasantly waiting (thank you drugs). Our son officially became Seton Blaine Oliver as we talked. I sat and talked with her and one of our wonderful nurses until she was cleared to go to her new room. The rest of Wednesday really is a blur to me now. It was filled with joy, tears, celebration, and consolation.
By Thursday morning (March 10), Seton was no longer on oxygen and breathing entirely on his own – something many doctors did not expect him to do. Miracle. He was taken back for an MRI that morning. We spent the day checking on and feeding our boy, talking with guests, and helping Shawna recover from major surgery. Seton was doing most everything a newborn is supposed to do except for swallowing. Swallowing is tied for the most important thing a human should do, along with breathing. This complication is still with us. His risk of asphyxiation and/or aspiration is very high and dangerously life threatening.
Friday (March 11) proved to be an exceedingly difficult day. Shawna was not yet producing much milk, and Seton was not reacting well to the formula he was eating. Much of the day was spent watching him throw up repeatedly. This day, we were also given the results of his MRI. The long and the short are not really different than all we’ve received but now we have words to put with it – holoprosencephaly and lissencephaly. As a reminder, we are not medical professionals. Our vocabulary shouldn’t possess such words.
Now it’s Saturday (March 12). Exhaustion is setting in for Shawna and me. Overall the day was okay. Shawna was gaining speed with her milk, and Seton Blaine was taking to it much better. Our emotions have now been ripped apart and stitched back together, only to be ripped apart again. The scab that won’t heal. Our family and friends have absolutely poured themselves into us, and by God’s grace, we push through agony to enjoy our time with our son.
Sunday (March 13) was upon us. We’re simply amazed at this point of the carefully constructed orchestration of people God has placed in front of our path. It is the task no man is capable of completing. Truly divine intervention. We believe part of this is a pediatrician; Dr. Habersang. He is the local guru of all things unique and special needs. He so graciously donated his time to us and our family to review Seton’s history and condition and gave us his insight and medical opinion on diagnosis, treatment, and care. We pray he will have room in his schedule and heart to take Seton as a patient. During our discussion with him, we learned just how scary lissencephaly and its effects can be. Uncontrollable seizures, Cerebral Palsy, and aspiration are some of the highlights. His brain development is approximately 5% of normal.
Today (March 14). Seton Blaine exploded his diaper all over his clothes and all over his night nurse before we arrived today. That’s my boy. He fed well yesterday and last night. His morning feeding was cut short because he needed an empty stomach for the upper GI test this morning. We are currently facing the decision to operate on Seton to have a G-tube placed in his stomach for feeding and a fundoplication to minimize regurgitation. That procedure is provisionally scheduled for the beginning of next week.
Where does this leave us? This is so much harder than we ever fathomed. The hurt is indescribable. It’s a lifestyle we didn’t imagine and don’t want – 16+ hours in the hospital every single day. But we’ll do it everyday in perpetuity if that’s what is required. Some days we start below 0 and work our way up to a 3 or 4. Some days we are able to make it to a 6 or 7. It is absolutely brutal. So what gets us through? God. God’s grace and mercy to wake up the next day. God through each one of you. God through every care provider that surrounds Seton.
I wish I could name and number every person who has made an immeasurable difference in our lives during this. All I can do is pray that your blessing to us is multiplied 1000 fold back to you.
What can you do for us now? Pray. Pray that Seton’s airway and throat are miraculously operated so he can swallow for nutrition and without fear of aspiration. Pray that his entire brain miraculously grows, matures, and develops to a normal level. Pray that Shawna and I have the wisdom and guidance to make the right decisions for our son’s life. Pray that God touches the hand of every nurse, doctor, and surgeon that finds our boy.
I’ve told a few of you, and now I’ll tell all of you. I’m not certain how the story ends. Regardless of the outcome, if just one person is brought to God or experiences what His love is all about. We would endure it again. And I say this as tears stream down my face with a heart holding excruciating pain.
Zane
"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." 2 Corinthians 12:9
