Third Time is a Charm (Or so the Saying Goes) Part 2 of 3

Posted: December 22, 2010 in Family, Uncategorized
Tags: , , , , , ,
 

Blake, Heather & Josh - May 2006 Colorado Springs - Heather is pregnant with Cooper here.

“There is no greater test to faith and marriage than the very thing that shares the flesh of both husband and wife and the thought of it being ripped away from you.” (Joshua Harris, Testimony, 2006).

                My wife and I learned so much from our experience with Blake. We learned much about who we were as individuals, as people, as a couple and most of all we learned a great deal about our own characters. The quote above represents the stress which is born from heart-wrenching experiences such as ours and how this stress impacts our most important and meaningful relationships, both negatively and positively. We experienced one of the most traumatic moments of our lives up to this point and we experienced it together. I cannot imagine going through something like this alone. I cannot imagine living these moments without my wife. We had already developed a strong foundation prior to our experience with Blake, but this moment set the concrete to form. It strengthened us as individuals, as a mom, a dad, a husband and a wife.

                We were always on the same page when it came to having children. She agreed to more than one and I agreed to less than five. Actually, I think she just went along with me on this one and figured we’ll cross that bridge when we get there. We decided to wait at least a year after Blake was born before trying to have another child. This year turned into three as my wife pursued nursing school and the demands of the curriculum proved to be exhausting and not conducive to lend patience or time to a child-bearing/raising environment which was beyond our current means.

                Heather’s rigorous school schedule and part-time employment proved to be a challenge all on its own, not to mention trying to add another child into the mix of things. The slam dunk goal for us not having a child as I previously alluded to was ultimately Heather’s school requirements as the amount of time needed off school for the pregnancy would interfere with and only prolong her being able to graduate. We even tried to be slick and time the pregnancy for her Christmas break, but that mathematical equation just didn’t work out for us. So we waited…and waited… and waited. We waited until my wife was almost out of school and sure enough, SLAM DUNK!!! She was pregnant!

                We were very cautious as to not tell anyone about the pregnancy until our window of comfort had passed, but this was nothing different from the first time we were expecting. Blake was just over three years old and managed to keep this entrusted secret until we were ready to unleash the news. We let Blake tell the rest of the family the good news. He managed to harbor this secret for three long months. He was itching to tell someone, but he kept his composure and stuck it out. This pregnancy, much like the first was very stereotypical, even up to the end. As we neared the end of the pregnancy, Heather’s blood pressure started rising again and with her history of pre-clampsia, the doctors did not hesitate, they went ahead and scheduled her for an induction. There would be no failed induction this time and Heather delivered herself a birthday present. Cooper was born on his mother’s birth date, November 12, 2006, just over four years after the birth of our first child.

Cooper Elijah Harris

                I was a little more at ease this time in the delivery room. We chose not to tell family and friends about the induction so we had the delivery room to ourselves with no one anxiously awaiting our announcement in the waiting area. We purposefully didn’t invite anyone so we could share in some peace and quiet among this new edition to our family. The commotion and chaos of the birth experience the first time around was overwhelming. My wife and I just wanted to share an intimate environment where we could take everything in without any additional stimuli. With Blake, I felt as if we catered to everyone elses needs and for that brief while, my wife and son were overlooked. I cut Cooper’s umbilical cord, just as I had done with Blake and watched the bonding moment which is supposed to take place once a mother and her child are united together for the first time. I anxiously traversed back and forth, back and forth from Cooper to my wife, to Cooper, back to my wife and so on. A sense of calmness overcame me throughout this situation, but the skeptic was still looming within. Everything was going just as we had wished and prayed for and by all external indications, we had ourselves a healthy little boy named Cooper Elijah Harris.

                We had a few setbacks while in the hospital, and our total visit time crested over the typical 48 hour mark and topped off somewhere around 72 hours. Each issue was magnified to us as our senses were on high alert and the watchdog in each of us was prowling around looking for and preying upon the slightest inconsistencies in our son’s health as we were hypersensitive to everything happening around us. There were several issues which coupled together to warrant our three-day stay, the first of which was Cooper not being able to urinate after his circumcision. The next step was for Cooper to have a bowel movement which was delayed as well. For a baby to leave the hospital there are essentially three things which have to take place; they have to eat, pee and poop (I know, extremely complicated stuff here). Cooper was already having difficulty with two out of the three, but as you will soon find out, the third item on the menu proved difficult as well.

Cooper - November 12, 2006

                The last and probably most significant issue, looking back in hindsight, was Cooper’s inability to suck. Cooper was born without a sucking reflex which is innate to most infants, but nope, our son had to go and prove to be difficult. Cooper had to be hand fed with a syringe and even then he was throwing up a lot of his feedings, all while in the lovely comfort and security of the hospital. Cooper needed to be monitored by the NICU so they could measure every drop in and every drop out. We were already commenting frantically between each other with dead-end guesses as to what was going on with our son and what the next steps would look like. Was our hypersensitivity skewing our ability to reason on behalf of our child, thus causing us to overreact?

                Heather was going to make an attempt to breast feed this time whereas with Blake it wasn’t even an option she would consider, but Cooper’s sucking reflex, or lack thereof, proved this task to be quite difficult. Not to mention Cooper was throwing up on a regular basis, but the full extent of his vomiting wouldn’t reach a climax during our stay at the hospital. In the meanwhile, Blake was excited to have a little brother and the “big” responsibilities which come with such a title, but this excitement faded as Blake began to realize that Cooper wasn’t some sort of ready-made playmate. There we were, cautious and reserved due to our previous experiences, but nevertheless, we went home as a family.

Blake's Ready Made Playmate - Sort of

                It wasn’t long before Cooper’s symptoms progressed and wreaked havoc on every blanket, rug, towel, carpet, clothing and any other household item within reach of his mouth. Heather’s mom made special bibs out of hand towels which we still have to this day to try and cut down on the amount of laundry we were mowing through. How can one baby cause so much laundry? Cooper threw up on multiple occasions throughout any given day, sometimes upwards of 25 times or more per day. Within 10-14 days of Cooper coming home, it was back to the doctor’s office to investigate this abnormal activity which was culminating within our second child.

                The doctor suggested maybe there was a conflict with the breast milk and decided to have us try regular formula. Two more weeks dragged by and so had several gallons of vomit. We made our way back to the doctor only to have them tell us to try a soy-based formula. We were becoming extremely frustrated, but we both acknowledged there were certain steps which had to be taken before jumping to any conclusions, even though in the end, Heather turned out to be right the entire time. No matter how right she was, she was not the professional doctor making these medical decisions about our child’s health. She was a self-admitted basket case, questioning every move, every word, including her own. She spent countless hours pecking away at the keyboard, constantly clicking the mouse as she surfed from site to site, looking for anything and everything that might be meaningful or remotely related to Cooper’s situation. Sleep deprivation became the norm. All in all, we were both frustrated, and very pessimistic about the soy-based formula and everything else, but as previously mentioned, we needed to go through these steps first.

                Two more weeks passed by and with each new suggestion presented by our doctor, we grew more and more frustrated and less and less confident in their ability to diagnose our son. In the meanwhile, Heather’s madness was taking a toll on her and our family as she mustered all available resources to the attention of Cooper. I was able to keep my composure during this time and had to try and be the rational member of the family, even as I questioned my own rationale during this timeframe. The next suggestion led to some special formula for babies with reflux that I can’t even pronounce. I mean, really, who’s going to stroll down the formula aisle at the local grocery store and be like, “I would really like to buy that stuff I can’t even pronounce. What is it again?” Anyways, I had a little ADD moment there; now let’s get back to the story.

                During this process my wife scheduled an appointment with the Gastro-Intestinal (GI) clinic at Children’s Mercy Hospital, but we couldn’t get in until March. I’m thinking, IT”S DECEMBER!!! What do you mean we can’t be seen until March?  Needless to say we tried the formula I couldn’t pronounce and continued struggling to get much-needed answers for our son. We were growing tired and weary of all the back and forth with the doctor and the unsuccessful attempts at diagnosing Cooper’s condition. If one could be at wit’s end, we were as close as two parents could be. We decided to try and speed up this process by taking Cooper to the emergency room; however, the emergency room acknowledged there was “a” problem, but as long as Cooper was hydrated, it wasn’t an “emergency room problem”. There was nothing to technically admit Cooper for.

                In a matter of weeks, Cooper’s weight snowballed into an avalanche down the slopes of the growth charts and we began questioning our roles as parents as we couldn’t get the necessary answers for our son. We knew there was something wrong and we knew what it had to do with, but we couldn’t get the help and answers we were so desperately looking for. So after we tried the formula that I couldn’t and still can’t pronounce, we then went through the process of trying antacid medications, but none of them helped Cooper with his symptoms. We made it through Christmas and the New Year Holidays, but we had to do something, something more than what we had already done. We had to become our son’s advocate as no one else would.

Cooper - Christmas Eve - Not looking so hot 😦

                                We approached our family doctor one last time and asked them to call in and admit Cooper directly to Children’s Mercy Hospital, but the doctor’s office couldn’t do direct admissions. We departed from the doctor’s office and headed straight to the emergency room yet again, a trip which I hope we will never grow accustomed to making. We stretched the truth a little bit (OK, OK, WE LIED!!!) just to get Cooper seen, but at this point Cooper weighed the same at two months as Blake did when he was born, and over the course of these two months, Cooper gained a whopping 13 ounces. We were beginning to fear that this state of malnutrition would lead to further growth or developmental issues, especially since the first several months are critical for normal brain development.

                We told the emergency room doctor that Cooper had low urine output so we could get him admitted. Cooper’s urine output was low, but it was relative to what he was actually eating so he didn’t really have low urine output, but we were desperate at this point. Three days earlier, I sent an email to a close friend describing Cooper’s condition; I mentioned that Cooper was really struggling with eating and sleeping. His throat was burned from throwing up so much that even everyday menial tasks were becoming difficult for Cooper to manage. Cooper would get hungry and cry, then we would feed him and he cried some more because it hurt to eat and then he would go to sleep and wake up crying because he was hungry and then cry some more because he was tired and couldn’t sleep. Cooper was caught up in a vicious little cycle and it was tearing us apart as we tried every available option up to this point.

                We were admitted to Children’s Mercy Hospital on the evening of January 8, 2007. The first seven days were nothing more than trying different medications and seeing if these medications would help ease Cooper’s symptoms. The doctors had other options, but after being in the hospital for seven days, we were down to one last hope before surgery. Small doses of certain antibiotics are known to help babies with GI issues, but our conventional methods of treatment were diminishing one by one until now and this was it; this was our last stand. The medication was administered and to no avail, the antibiotic sadly did not work, having no effect on Cooper’s vomiting. This was our seventh day in the hospital and we had yet to come close to a final resolution. My wife and I even questioned going home among each other so we could administer all the different medications at home. I mean, did we really need to be in the hospital just to have someone administer medication to our son. We didn’t think so. We talked back and forth and then decided to ask the doctors to release us so we could try this sit and wait approach from the comfort of our own home.Cooper in Hospital

                My wife and I made the decision to go home that night and get some much-needed rest.  Up until this point, we provided full care to Cooper while he was in the hospital so no one ever had a good picture of just how much he was throwing up. After enjoying the confines of our own home, even though when you’re home, the only thing on your mind is wishing you were at the hospital, we were anxious to return and see Cooper again even though we essentially just left. We were early to rise that morning and hurriedly made our way back to the hospital. We made the long track from the parking garage to the hospital room to see our son. Once we reached the nurse’s station, we were surprised to see the nurse holding our son. He apparently had a rough night and the nurses were making an attempt to console him. They kept saying how adorable he was and described Cooper as this precious little gem, but we were more worried about the details of his night. Cooper had thrown up 12-15 times over the short amount of time that we were actually gone and finally, FINALLY, someone else saw what we were talking about.

                On top of everything else that was already in motion, I was enrolled in classes (12 credit hours) and had to do a great deal of study, assignments and online exams from Cooper’s hospital room. At one point during our stay, I had to beg one of the nurses to come in and comfort my crying baby as I was in the middle of a timed exam at 2:00AM in the morning. Heather was spending the night at home preparing to start a new job at the very hospital which Cooper was receiving treatment at. Orientation was bright and early (well, I’m not so sure about the bright part) the very next day and Heather had the pleasure of spending even more time at the hospital than she already was. Our normal lives already bordered a state of organized chaos and then throw in Cooper’s health problems on top of all this, the situation darn near turned frenetic.

                Where was I? Oh yes, I was talking about possibly taking Cooper home. How foolish of us! The doctor paid us a visit on January 15, 2007, seven days into our stay at Children’s Mercy Hospital, and the short amount of time that the doctor was in the room, Cooper threw up seven times. If you couple that with the night before, the nurses and doctors had seen enough to confirm our concerns; however, this entire time, the medical staff had to rule us out of the equation. There is a substantial amount of failure to thrive cases which are due to parents neglecting or abusing their children. We knew this prior to being admitted to the hospital and it was a concern of ours that the medical staff might suspect neglect or abuse. When we chose to go home for the night, this gave the nurses and doctors an opportunity to evaluate and care for Cooper without us being there. They were trying to rule out neglect and abuse and we knew it. It was killing us as parents to even think they considered it as a viable option, but at this point, I think or at least hope it was more protocol than anything else.

                Surgery looked more and more inevitable at this point; however, the side effects of surgery and having to opt our son into the surgical room weighed heavily on our shoulders as the story with Blake was much different. With Blake we didn’t have a choice, as not having surgery meant he would die. We still held a brief glimmer of hope that surgery wouldn’t be needed, but if it did, it would have to be our “choice”. Our skepticism over GI medications led to more concerns during this wait and see mode as there was potential for some very harsh side effects. The use of some of these medications for periods of longer than 12 weeks can lead to severe, long-lasting neurological effects. We were almost hoping and secretly praying that the medications wouldn’t work. The next 24 hours were filled with a multitude of tests and evaluations to rule out other medical conditions. Cooper was also placed on a high calorie formula to help with weight gain and to offset the amount he was throwing up.

                The doctors scheduled a Ph Study, a sweat test and an upper GI exam in the radiology department, but the upper GI test came last. There were a few different disorders/conditions which the doctors were probing for, one of which was Cystic Fibrosis. Just the thought of this diagnosis was heart-wrenching as we automatically began thinking what if.  The Ph test was a procedure where the doctors typically slid a probe down the nostril and into the throat to check the Ph level of the stomach acid to determine if someone had reflux or not and to what extent; however, Cooper’s nostrils were too small for the tubes and they had to go through the mouth which is less desirable for control and placement. The sweat test measures the amount of chloride in the sweat and is used to diagnose Cystic Fibrosis. This test was short and less invasive, but it had to be performed to eliminate Cystic Fibrosis as a diagnosis. The doctor told us at this time that Cooper was NOT leaving the hospital until he gained some weight. To some people, this would have been like inflicting agony and torture like treatment upon someone to stay in the hospital any longer, but my wife and I looked at each other with a sigh of relief; a glimpse of better days for Cooper looked to be in his future. Our son WAS going to get better, Right?

Cooper During Ph Test

                The one thing I really remembered during this time was just how time-consuming hospital life was. I was trying to manage my work schedule, school, my wife’s work schedule, another child and still trying to make sure we were available for morning and evening doctor rounds, not to mention any other scheduled or unscheduled events or procedures. One of our biggest struggles during this time, next to Cooper of course, was how do we meet the needs of our oldest son Blake without neglecting him emotionally or socially. To our surprise, Blake was a trooper the entire time. Blake was very understanding, especially for a four-year old and he was very concerned for his little brother, the same brother he thought was going to be his ready-made playmate. We were very candid with Blake and even though he didn’t fully understand what was happening, we told him that his brother was in trouble and right now, Cooper needed his mom and dad, but to tell you the truth, mom and dad needed Cooper just the same.

                The sweat test came back negative while the Ph test was definitely high. A small sigh of relief came from within when we were able to dismiss the Cystic Fibrosis diagnosis. The doctors then ordered an upper GI test which ultimately revealed the culprit behind this medical hi-jacking which held my wife, my son and I hostage for the last two months. The upper GI is performed by giving the patient a nasty drink (I assume it was nasty according to the scowl on Cooper’s face) to contrast with the GI system. This was a horrible experience as Cooper was strapped and locked into a device which then flipped him upside down so the radiologist could acquire an image of his esophagus and stomach. Cooper threw up the majority of the contrast almost as quickly as it was administered to him and by judging the look on his face, I don’t think this purging of liquid was involuntary (just kidding, but I wouldn’t blame him if he had). Fear and the element of the unknown for Cooper were evident in his blood-curdling screams and his unwillingness to cooperate in this procedure. Nevertheless, the radiologist technician was able to complete the procedure and review what they needed to see.

Cooper During Upper GI Test

   With each completed test and procedure, we were closer and closer to one final reality, surgery. Cooper was still dousing everything and everyone with vomit. Sometimes I think the little rascal might have vomited on a few folks intentionally, especially knowing his personality now (just kidding…maybe). In one email, My wife made the following quirky little comment trying to make light of this heavy situation which also conveyed her frustration at the same time; “…at least Cooper made it longer than Blake without surgery. Blake (2 weeks), Cooper (2 months); however, this comment would become irrelevant in a few short years. After evaluating the Upper GI, the doctors came back and informed us that surgery was scheduled for the next day. I wish I could say we were shocked and that this decision horrified us, but it didn’t. This two month avalanche which had persisted up to this point with such a path clearing, energy draining force culminated to where we were in that moment and it had suffocating us, but at least now it was more of a relief that the avalanche had subsided or was about to. The accumulation of its effects could begin to recede.

                Cooper went into surgery on January 16, 2007 at 1:00PM and by 4:45PM we received word that the surgery went exceptionally well. The doctors performed a fundoplication which means they secured his stomach around the esophagus creating a man-made sphincter. This is also the very reason we didn’t want to have the surgery because it would limit Cooper’s ability to throw up. What if he gets sick? What if he does something stupid like getting drunk and not being able to throw up as a teenager (yes, we actually thought about this)? The surgery allowed Cooper to dry heave and that was about it. Anyways, he was throwing up because the stomach had an open route right back up through the esophagus and out the mouth onto whatever was in its way, it being vomit. I know, I know, just what you wanted to hear about. I hope you already had your meal of the day prior to reading this, but don’t be too disgusted. Cooper’s vomit was definitely indiscriminate and blessed all with its presence, regardless of who you were. Cooper was now ready to begin his journey down the road to recovery.

                Cooper had five little punctures, two on each side of his abdomen and one through his belly button. The success rate at Children’s Mercy Hospital for the fundoplication surgery is 90% so we knew we were in good hands, we just had to reach out for those hands a few more times than we really wanted to. The surgeon made it to where if Cooper absolutely needed to vomit, he should be able to (even though this theory has yet to be tested) vomit if the force becomes intense enough, but it still won’t be a vomit like yours or mine.

Cooper's War Wounds - Sort of

                The feedings started out really slow. We gave him one ounce every two hours, but we had to make sure this ounce lasted for at least 30 minutes. If we fed him too fast he could wretch (dry heave), compromising his surgery. If we fed him too slow Cooper might not get the needed calories over the course of a 24 hour period thus extending our stay at Motel Mercy. We actually got to go home the next day as the feedings were going really well, but Heather’s insistence of going home instead of being monitored at the hospital also played a role. Once arriving at home, it was a feeling of déjà vu as if we had made a very similar trip through these doors before. Cooper was extremely uncomfortable the first several nights as he was hungry for more than we could feed him. He was bloated from surgery, and cried because he was gassy; crying made his stomach hurt more which made him cry even more. It didn’t matter what Cooper did, he could not win for the next several days.

My wife stated the following in an email;

“…Me and Josh may not make the healthiest babies. We are very fortunate and blessed to be able to have babies that get to have surgeries and return home as there are many, many children that never leave the hospital and their parents go home with their arms empty. Hug your kids extra tight tonight.”

                One week later, we took Cooper to his post surgery check-up. Before the surgery, Cooper was listed as failure to thrive, the vomiting caused Cooper to miss out on much-needed calories which were needed to fuel his body and begin storing much needed fat for future growth and development. He was one percentile in weight, 10 percentile in height and 15 percentile for his head circumference. In a matter of one week following surgery, Cooper gained one pound, 11 ounces. This equated out to 25 percentile for weight, get this, 90 percentile for height and 50 percentile for head circumference. This should speak volumes to the importance and critical nature of nourishment at this age. Wait a minute though, ring the alarm people…DING, DING, DING, two weeks passed by and we took Cooper to his GI follow-up appointment. We received incorrect information from our family practitioner regarding Cooper’s growth chart percentiles. We were informed at discharge that Cooper needed to gain 30 grams per day to make sure his brain was growing and developing the way it should, but Cooper had only gained 12 ounces per day. If he didn’t gain this weight within two weeks, the GI clinic was going to re-admit him. We needed Cooper to start gaining weight NOW.

                We made our way back to the GI clinic almost one month later and it was Cooper’s last dance with the clinic. This was it! He weighed in at almost 14 pounds, making substantial gains and there was no looking back or incorrect information this time. We waged war with a medical condition for almost three months in all. We hung in there and fought the best fight we could. Cooper experienced cognitive, speech, and comprehension delays which he received aggressive treatment for. He still has speech therapy once a week in which he is progressing slowly, but progressing nonetheless. Cooper is four years old today and is the most adorable and energetic boy you will meet. He drives both of his brothers absolutely nuts from the inside out (He’s the middle child). One can’t help but wonder sometimes if we had acted sooner might we have curtailed these delays? This is a question we will never know the answer to so I try not to spend too much time dwelling on this or searching for a concrete answer.

Cooper One Month After Surgery - Looks Like a New Baby

                I was completely blindsided by Blake’s medical condition. The onslaught came on so fast, but this moment taught me to place my trust in God. Cooper’s situation allowed me to place my trust and peace in God. This isn’t to say I had a complete serene feeling come over me, but God was taking control of the situation. I had an overwhelming peace for the most part of this ordeal and yes, I had negative thoughts arise, but they didn’t consume me like before. God came through like He always does, but I was in a place where I could experience God’s comfort and peace as His peace and comfort was always there before, but I wasn’t in a place where I could reach out and accept it. My comfort and peace was situationally based and not foundationally based.

                Cooper’s journey felt like it took place over the course of a year, but it was over a period of three short months and we had essentially sat back, watched our child be born and then wither away to a state of failure to thrive. We went from helpless, to hopeful and then to helpful as we demanded further treatment for our child. There were several opportunities for us to question our parenting abilities, and we did. We wondered if the doctors were doing the same or if protocol was all that mattered, but all in all I think it is more of a process when something like this goes array. I don’t know a single person who would question our love or our parenting abilities toward our children.

I would like to say our experiences end here and that all was well in the Harris house moving forward, but one last tragedy would strike our family and this time it would take us to the edge of losing a child.

Do you not know? Have you not heard? The Everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases in power. Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Isaiah 40:28-31

Cooper - 4 Years Old

 

…To be Continued

Advertisements
Comments
  1. Rachel says:

    Thanks for sharing the boys’ stories. I am glad that Blake and Cooper are doing well now and I hope to here the same about Gavin. Cooper is one of my favorite little guys at church and he made me feel awesome last weekend when be hugged me.

  2. Kerrie says:

    Josh, thank you SO MUCH for including me on this blog distribution invite. As a mom, as a human being, as a Christian, I am beyond touched by you and your wifes strength and accomplishments. Your boys are such a blessing! Everyone who reads these stories and has the pleasure of knowing all of you is blessed as well to fully undertand the capacity for patience, love, and trust. You are also a very gifted writer!

    • Kerrie,

      Thank you so much for the kind words and encouragement. I really appreciate you taking out the time to read this and I hope things go well for you in your new position as you go off on your own little journey. Thanks again so much. We’re going to miss having you around.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s