Posts Tagged ‘health issues’

Giving it all away…

Give What?

                I met the Gibson family seven years ago in 2004. I had absolutely no idea whatsoever that this family, including their sick little boy Xavier, would impact my life, reinforcing certain future actions which up to this point had been completely ignored. Xavier was born with a severe heart condition which ultimately led to him desperately needing a heart transplant. During this same time frame, we connected with the Gibson family through a local charitable support group, CHD Families. Our previous experiences with Congenital Heart Defects (CHD’s) and our own child, led my wife and I to be a part of this support group. This connection kindled a flame of desire to help the Gibson Family, but how do you help a family with such a need, both emotionally and financially? We didn’t have much money and we weren’t real efficient with our time management so time always has and still does run thin, but again, how could we possibly help?

                I took a small first step by reaching out to the Gibson family, letting them know that we were there for them and if we could help in any way, shape or form, to please let us know. These types of calls and offers often deluge loved ones when tragedy occurs, but I meant it. Our only option now was to wait and listen. A much anticipated call came in for the Gibson family; a gift of life had been given as Xavier’s new heart had been procured. This call revealed another need as the family had traveled to Saint Louis, Missouri so that Xavier could go through heart transplant surgery.  This trip to Saint Louis provided an opportunity to help as the family would have to leave behind their home, their friends and the rest of their families so they could be with Xavier during this time frame.The family organized a massive multi-family (I think it was more multi-city to be honest with you) garage sale. We made the decision to contact family and friends to help assist the Gibson’s, collecting over two SUV’s full of used goods which went towards supporting the family’s financial needs while Xavier was hospitalized in Saint Louis recovering from his heart transplant.

Xavier

                This family taught me so much more through their hope and courage in the days leading up to and after their son’s heart transplant. This little boy’s family fostered a desire to embrace and actively promote organ donation, making this topic their calling, ensuring that people are empowered with the knowledge and awareness of donating the organs of their own body and/or those of loved ones who have passed away. In the midst of their own tragedy, they were trying to help others avoid this very same thing.  Xavier was very sick by the time a donor heart became available and the thought will always be there that if he had received one sooner, he might still be alive today. The Gibson family will never know the answer to their question, but everyone can help. We can all play our part and ensure that organ donation is something we have taken into consideration and make a firm commitment to. Xavier was ultimately too sick and did not survive through the recovery process of the transplant, but his mother and father, along with other family members, will carry on his legacy through their lives and the act of organ donation. Will you join this family in making a decision regarding organ donation?

It’s My Turn

                The doctors and nurses were buzzing in and out of the hospital room after my mother had passed away. She had been dead for several hours. Her body was cold and all signs of life had withered away, much like a dying flower in a field or a plant which has suffered the consequences of dehydration. A member of the medical staff would present me with a question which initially hit me as a mere cold and uncalculated approach to the topic, but nevertheless, a topic which needed approached. I could hear footsteps in the hospital hall as a doctor hesitantly approached our hospital room and lightly rapped his knuckles against the cherry stained door which was already partially opened.

 Knock, knock, knock.

     The door hinges breathed out a light squeal as the force of the knock slowly pushed the door open even further. The small ray of flourescent light which previously lined the wall slowly widened, providing more light to the dimly lit room. His voice was quiet which engaged my concentration as I tried to focus on what he was saying and then he asked me about the concept of organ donation. He asked me if I was willing to donate any of my mother’s organs. I shrugged the doctor’s question off at first needing some time to filter through this barrage of emotions which were consuming me. I mean, this seemed absurd to me at first, mostly due to her physical health, but several minutes later, I sought further explanation as to what exactly could be donated.  

                My mother and I never talked about organ donation. I immediately began fumbling through her purse, looking for a driver’s license or some other documentation in hopes that she may have indicated something…nothing. I thought if the license indicated such an action, I would be off the hook. I will share what was donated in just a few minutes which will bring these next few thoughts full circle. I thought about precious little Xavier as his picture and his family flashed through my thoughts. I thought about my mother-in-law, who had just received the gift of sight again through an act of organ donation. I thought about these people and wondered, how could I possibly keep this gift from someone? How selfish would that be? So without discussing it any further and without mentioning it to anyone except my father (they were divorced for 33 years so it was more of a reassurance conversation for my own purposes), I made the decision to donate everything possible. I mean, if the doctors can use my mother’s organs, bone and connective tissues for the benefit of another individual…Who am I to say no?

                I felt good after that, not good as in I had done something good, but good in that my mother would be able to help someone, even in her passing. The night proceeded on as time seemed to stand still, even though time is the one constant which always passes by at the same rate. I hesitantly departed the hospital around 10:30pm, approximately three hours after my mother passed away and 13 hours since I first arrived that very same day. I received a call from an organization called Midwest Transplant Network at which time I went through a grueling medical interview over the phone regarding my mother’s medical history. I was expecting the call and I knew it was coming…I just kept thinking and hoping that maybe it wouldn’t. My mind was everywhere except for that conversation. I repeatedly paced the halls of my mother’s apartment, room to room and back and forth, over and over, again and again. I apologized repeatedly for making the interviewer repeat multiple questions and even asking the person on the other end of the phone if we were done yet. I was losing my patience with this individual and I didn’t even know why. I even abruptly interrupted the interviewer to ask, “I’m really sorry, but are we almost done yet”? The interview/questionnaire went on for approximately 90 plus minutes and I was asked questions about my mother that no son should ever have to be asked, but I would surprisingly find out later on that this 90 minutes was actually time very well invested.

                You couldn’t tell the transplant medical team had removed a thing from my mother’s body at the funeral, unless you were me of course and/or you knew what you were looking for. The organs which had been donated were either covered up by her garments or replaced with replicas so you couldn’t notice any distinct or immediate differences by sight alone. I haven’t really given much thought about the donation since that very moment I actually made the commitment to donate her organs, but that changed recently when I received a packet in the mail from the Midwest Transplant Network. I would like to first share a poem which accompanied the donor letter and then I will share the impact of her donation following the poem.

To Remember Me – I will live forever

Robert N. Test

 

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. 

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives. 

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman. 

Give my heart to a person whose own heart has caused nothing but endless days of pain. 

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play. 

Give my kidneys to the one who depends on a machine to exist from week to week. 

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk. 

Explore every corner of my brain. 

Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window. 

Burn what is left of me and scatter the ashes to the winds to help the flowers grow. 

If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man. 

Give my sins to the devil. 

Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. 

Robert N. Test

The Impact

                On January 26th, 2011, my mother passed away from complications due to smoking related causes, COPD and an incident which took place when my mother tried smoking with her oxygen on. These are the major factors which heavily contributed to me, her only son, having to make this decision of gifting her organs at her young age of 57. Three weeks later, I received a packet in the mail which contained a letter from the Midwest Transplant Network. This letter disclosed the recovery of my mother’s tissues and organs. They were as follows;

     They were able to recover bone and connective tissues which are going to be transplanted into injured transplant patients who need surgery to heal. These procedures can include orthopedic, neurosurgical and reconstructive applications.

                The bone grafts they recovered are used to replace diseased bone in individuals suffering from bone cancer. As many as 50 people may benefit from this gift. My mother would have liked this as cancer took the lives of both of her parents.

     Here is the important part to me that really hit home and this was one of my main reasons for gifting my mother’s corneas. I watched and stood by helplessly as my mother-in-law began losing her eyesight through a hereditary condition of the eyes which progressively deteriorates her eyesight. She received a transplanted cornea which has allowed her to partially see again, but she has one more cornea transplant to go. How could I keep someone from experiencing such treasures as watching their grandchildren grow old? How could I sit back and allow someone to watch the love of their life for the last 50 years slowly fade away in the haze of their own eyesight. I couldn’t and I didn’t.

     My mother’s corneas were successfully transplanted into a 61 year old male and a 60 year old female, both on the East coast. Both of these individuals were given the gift of sight.

     Please consider donation, both for you and your family members. Make the decision easier by indicating your wishes on the back of your driver’s license or indicate such in your will. You can give life in the midst of death. My mother’s options were limited due to her health condition, but I gave all that I could and I can only hope that for one person…that all was enough. So, will you join the Gibson Family in making a firm and committed decision regarding organ donation? Will you join me in making a decision regarding organ donation. Please…please….please…Join someone in this cause.

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Cooper 2007

               This post is by far one of the hardest things I have ever written up to this point in time. There are several reasons for this, but I will focus mainly on just a couple of the major ones. Our first son needed a life saving surgery to repair a broken heart and our second son needed surgery in order to correct a defect in his stomach.  The collective results of these experiences on us were emotionally draining and these events culminated and concluded with Gavin’s story. The rest of what makes this hard to write will bear itself throughout the paragraphs of this post. The ability to vividly remember snapshot images and the emotional trauma associated with them is a joy and a curse. I am ecstatic that Gavin miraculously pulled through all of this, but I took his illness and near death extremely hard. The events leading up to the birth of our third child were carefully weighed and cautiously accepted. I mean, third time is a charm, Right?

Blake 2007

               After Blake’s heart condition and Cooper’s stomach defect, my wife and I hung up our baby-making hats. We made a tentative unwanted realization that maybe we shouldn’t have any more children. My wife seemed adamant on this position while I reluctantly went along in hopes of waiting out this stronghold position of hers. Other people made hapless comments about us having more children and my wife automatically snapped back and shot their innocent inquiries down before any more words could fly from their mouths. She quickly answered “WE’RE DONE!” and I almost always followed this up with a quick and quirky comment, “She may be done, but I’m not done yet”. I played this off as a joke, turning my head towards her direction and shelling out a half-hearted smirk. I really wanted us to have more children. We had two children with medical problems at birth already and the chances of a third child having issues had to be slim, Right? I mean, there was no indication of any genetic defect involved so the odds had to be on our side. They had to be! Regardless of the odds or statistics, my wife was not comfortable having a third child.

                My wife and I came to the realization that we were going to be a two child family. Blake was a toddler at this point and Cooper had fattened up like a Thanksgiving bird. You never would have guessed that this kid had an eating problem. The only eating problem he had now was eating too much. We honored and cherished making many memories with the boys during this time period. Blake started Kindergarten and my wife and I were just beginning to notice Cooper’s delays. There really wasn’t anything to notice, but more of what was missing which grabbed our attention. Cooper lacked a vocabulary and we only knew what he was saying or indicating because we were used to his half-hearted attempts at communication. Cooper also began displaying behaviors which were abnormal to us and at first seemed to be autistic in nature. He wasn’t a social baby, and enjoyed many activities which were classic and indicative of a child much younger than he was. He was behind in what the educational assessors/evaluators considered normal play, normal speech and normal language comprehension. This situation presented many challenges and a struggle all of its own, but that struggle is for another story. We had a difficult time getting Cooper evaluated, but we stuck with this process and he became eligible for treatment/therapy as a part of the Missouri First Steps program, as he was more than 50% deficient in all the above mentioned areas. This meant that at 18 months, Cooper was essentially functioning at a level consistent with or below that of a nine month old baby.

Blake and Cooper 2007

               After countless times of Heather telling people no and me following up with my typical line rebutting her comment, I estimated that these subtle relentless tactics would pay off, but my wife held her ground like a fortress, with unbreechable walls. She wasn’t budging on this decision. On multiple occasions I hung my head, almost as if I was retreating in defeat and beginning to accept this unwanted realization. Maybe this was it, maybe I need to accept the number of children we have and be grateful for the opportunity to raise them. This steadfast, strong approach by my wife was secretly growing weary. Her defenses were falling and she didn’t even know it just yet and neither did I, but Heather was sub-consciously thinking about retreating from her earlier position on not having a third child.

               Cooper was climbing stairs and even ladders by this point. He didn’t have a fear in the world when it came to climbing. His face had fattened up to chubby round and his mid-section and thighs were on the brink of bulging with fat rolls. He had these large adorable eyes which mesmerized you, capturing your heart with just one look and cheeks that screamed out pinch me. You could even see the beginning of some reddish-blonde hairs budding up from Cooper’s once bald head. There was just one problem for Heather though, Cooper was beginning to lose his baby look and the Harris family loves their little babies. The fact that Cooper was beginning to grow up brought home the reality that he might very well be the last child to grow up in the Harris household.

Cooper 2008

               It was Labor Day weekend 2008, Heather and I made our traditional trip to Independence, Missouri for the once a year Santa-Cali-Gon Days Festival. This time of year is very unpredictable in terms of weather so we dressed the boys appropriately and off we went. Upon arriving at the festival we went through our typical motions and followed the usual routine of hitting a few street vendors’ booths and grabbing a hot dog or two from the local Boy Scout group. The crowd was still sparse at this point and you could hear all the street vendors pitching their products; “Turkey Legs, Turkey Legs, Get your fresh hot Turkey legs”, just two booths down a timid high school aged youth was passing out samples of assorted roasted cinnamon nuts and the sweet smell of kettle corn hovered in the air, long before you ever saw the smoke rising from the big black kettle.

               After spending a little time on the street, we made our way to the craft area. We enjoy looking at people’s crafty work and artistic approaches to every day goods, but we rarely buy anything. This has mostly to do with the fact that when we do buy something, we rarely put it to use. We trudged through each tent which was swarming with people and vendors. Some vendors were out and about their displays, hurriedly exchanging goods for money and change with veteran patrons while other vendors seemed to sit back and wait, almost looking as if they wished to be someplace else.

               We tracked our way up one side of the craft tent and down the other, commenting back and forth about different products. We shelled out both positive and negative comments of praise and critique towards whatever it was the vendors were selling. We were forced to look at some displays longer than others as we maneuvered the baby stroller throughout the crowd, weaving in and out of gawking patrons. As we pushed Cooper along in the stroller, we were armed with apologies ready to be delivered as we nicked at the heels of the people walking before us. The booths ranged from decorative goods to artwork, pictures, frames, even picture frames and all sorts of other unique items for patrons to purchase. This was just like all of our traditional trips from years before with the exception of one tiny little phrase which escaped Heather’s lips. These spoken words required an oncore performance before it would sink into my psyche. We approached several different vendors selling baby clothes and with each passing, we realized we no longer had a need to look at any of these clothes, except for how cute and adorable some of the items were. The realization of us not having any more children must have been weighing on Heather’s heart because that trip to the festival became an iconic moment forever etched on our family timeline. I did a double take, looking back at Heather and said “WHAT!!??”  As calmly and nonchalantly as she said it the first time, she repeated herself, “Let’s have another baby.” I replied, “Seriously! What caused you to change your mind?” She wasn’t really sure at this point, but she knew we weren’t done having babies just yet. Something inside of her just kept tugging and pulling at her subconscious. She just felt like our family wasn’t complete yet.

Blake and Cooper

               We had taken a considerable amount of time, at least to us, to have Blake and Cooper. It took us longer to conceive than we originally anticipated with each of them and we expected nothing to be different this time around. Two weeks later, Heather was pregnant. We wouldn’t know it at the time for several more weeks, but in hindsight, it all happened so amazingly fast. Heather later stated that it probably was a good thing that she conceived so fast because if the attempt at getting pregnant would have dragged out, she probably would have changed her mind.

               The pregnancy started off great, well, as great as a pregnancy can start off. This was the continuation of the Harris family’s journey which was headed down yet another road, to yet another adventure. Everything went really well during this pregnancy, but one thing was different from any of our previous pregnancies; Heather was diagnosed with an auto-immune deficiency disorder, much like Lupus and as the pregnancy progressed, she needed to receive extensive monitoring to make sure her body did not attack the fetus. The side effects of this disorder morph as the pregnancy progresses; In early pregnancy, there is an increased risk for miscarriage and throughout the pregnancy, there is the potential for stunted growth and/or the baby being stillborn at birth. There are many other complications associated with the auto-immune disorders which can include risks of infection and even death which are 20 times more likely in women with these disorders (Mann, 2006). Here we are in the middle of our third pregnancy, already on guard due to our past experiences and yet we are hit with another bombshell. We looked forward to each doctor’s visit with a bittersweet disposition as we experienced bi-polar like mood swings as we rode hostage to this emotional rollercoaster. This frame of mind was mainly due to the reasons behind the visits and what we might find out during them as well. We teetered back and forth from feelings of joy to feelings of despair as we looked forward to any good news which might come about, but clinched our teeth in fearful anticipation that everything was going to be alright. We harbored much of this in silence from our family members as we didn’t want to raise their concerns and set sail to any further stress than necessary.

Blake and Cooper 2009

              This newfound knowledge about the auto-immune disorder was just that, knowledge. There were no external symptoms or immediate underlying concerns leading to further anxiety. As we approached week 32 of the pregnancy, the time spent at doctor’s offices and hospitals increased exponentially. As a precautionary measure, we had a fetal echocardiogram at 32 weeks. This procedure looks at the baby’s heart to determine if the baby has any congenital heart defects while still in the uterus.  This was yet another moment where we were on pins and needles, almost holding our breath while we tried to gauge what the doctor was looking at, attempting to interpret their reaction to what they were seeing, but even if something was wrong, most doctors have a good poker face. The test results were negative, meaning the doctor did not find any congenital heart defects present. Whew! We could wipe the sweat from our brows and breathe again as we did not have to worry about heart defects this time around, at least not those which are present in the womb. The 32 week mark also introduced us to weekly bio-physic profiling (due to Heather’s auto-immune disorder) which included a non-stress test three times a week for the next seven weeks (a whopping 21 visits for this alone).  This baby soared the summit and went through the ringer in terms of rigorous medical testing to make sure our third child was healthy and there were no looming surprises to leave the doctors scrambling once the baby finally came. Were we worried? Absolutely! The mindset for us was not one necessarily filled with vexation, but more along the following lines; there were two completely different anomalies weighing against us due to our first two birth experiences and we were thinking the odds had to be in our favor this time around, Right?

               Heather’s medical diagnosis and our first two birth experiences placed us in the midst of a unique set of circumstances. The doctors played off their immediate concerns as long shots, but they had to be prepared for anything. Due to concerns carrying over from our first two deliveries and my wife’s auto-immune disorder, the doctors scheduled Heather for an induction at 39 weeks rather than wait until week 40 which was just a week away. Here we were again; we were supposed to be filled with an overabundance of joy during this iconic moment of our lives, and we were, but doubt was forcing its way in on us. We were very excited and the suspense was hovering in the air, but the not so faint memories of a not so distant past haunted our consciousness.

               It was a beautiful June day. We dropped the boys off at my wife’s parents on the evening of June 10, 2009 and went out to eat prior to making our way to the hospital. We enjoyed a peaceful dinner with just the two of us and then made our way to the hospital that same night. We approached the admissions desk and up we went to the very floor and room that would later serve as the delivery room for our third child. We nestled in, well as best as one can nestle in a hospital room and began preparing ourselves mentally for the events which lie ahead. The doctors started Heather off on Cervidil which threw her into painful contractions almost immediately. Heather expected this process to drag out and carry on late into the night or even come to fruition sometime the next day. At My wife’s request, I reluctantly made my way home and let the dogs outside . I decided that if Heather was OK with me leaving her at the hospital for the dogs, she wouldn’t mind me working out, taking a shower, grabbing some clothes as well as some other miscellaneous objects. I did work out or at least I tried; however, the situation took a dangerous turn while I was gone.

Blake and Cooper 2009 - Parkville, MO

               Heather called me while I was at home and told me to get back to the hospital immediately. She sounded a bit uneasy on the phone, but not frantic, maybe annoyed more than anything else. She didn’t tell me anything was wrong either, just that I needed to get back to the hospital now; I hung out at the house a bit longer, gathered some clothes and other miscellaneous objects, ate and took a shower. Again, she never mentioned anything about distress. While I was gone, my wife had unplugged the monitoring equipment and made her way to the restroom. After climbing back into the bed, she plugged the monitoring equipment into the machine just as it was prior to her unplugging it. My wife thought she might have done something wrong so she hit the nurse call button and just as a nurse chimed in over the intercom, four nurses calmly entered the room and began administering care. The baby’s heart rate fell from what was an already low heart rate of 110-120 beats per minute to a heart rate that constituted a medical emergency at around 50 beats per minute. The nurses came in and placed Heather on her side and gave her an oxygen mask to place over her nose and mouth. The staff continued positioning her in a multitude of positions trying and get the baby’s heart rate back to normal, but this first attempt wasn’t working. The nurses had to make the call to remove the Cervidil without the doctor’s order so that Heather’s body would stop contracting. These early and painful contractions were putting too much stress on the fetus. Once the Cervidil was removed, the baby’s heart rate gradually accelerated back up to the original baseline. I was impervious to this situation the entire time as I wasn’t even there for my wife; all because originally, the dogs had to be taken out to the restroom. That’s my story and I’m sticking to it.

               The situation subsided and the rest of the night was spent in anticipation of what was yet to come. Heather was undergoing these false painful contractions while I passed out cold on the hospital provided foldout bed. She always dogs on me for falling asleep when she had to suffer through this moment, but I had a really good excuse. Really, I did! She is an extremely tough woman and either hides or fails to reveal her true level of pain and discomfort and me, well, I have a sleep disorder. I am often falling asleep whether you like it or not as I am a borderline narcoleptic. The night came and went and morning was upon us and still no baby; however, this changed almost instantaneously, at least in the baby-bearing world, when the doctor broke her water. One hour later, we had a baby boy. Gavin Isaiah Harris was born on June 11, 2009 at 11:45am. He weighed in at just over the average birth weight at 7 pounds and 13 ounces.

Heather and Gavin just Before He left to go to NICU

Gavin - June 11, 2009

               I had this feeling of almost ownership this time around. I was becoming a pro at this delivery room routine. Gavin was born and then the delivering doctor handed him over to Heather. His cry came late which for me was the moment at which I could finally let go of the breath I was holding and begin to breathe normally. This moment was always a pivotal yet terrifying moment for me in the delivery room with all three children. Gavin was blue for an extended amount of time compared to our other children’s deliveries, but this particular detail didn’t seem to bother the medical staff. I proudly walked back and forth from Heather to Gavin, back to Heather, back to Gavin, then back to my awesome wife conveying descriptive details to her in regards to what they were doing with Gavin. Something wasn’t right though. All of a sudden, there was an uneasy buzz in the air and this conspiratorial process filled the room as I felt we weren’t being told everything just yet. There was some intermingling taking place amongst a multitude of healthcare professionals who had crowded their way into our room. There were more people in the room than I was previously accustomed to and that particular detail was not sitting well with me. My curiosity churned and my uneasiness morphed into anxiety, as I said to myself and then repeated it out loud to my wife, “Oh no, not again!!!” These feelings of uneasiness, anxiety and angst were solidified when the nurse told us they needed to take Gavin to the Neonatal Intensive Care Unit (NICU) for monitoring. They told us everything would probably be just fine and that he was more than likely having some transitional issues, but they had no idea what kind of fear and strife lay in our past experiences with our children or what was going through our minds at that very moment. Gavin was having some minor difficulty with breathing and they needed to monitor his oxygen levels. We spent most of our time back in the NICU with Gavin as the NICU staff began administering oxygen to him via blow-by.

Gavin at North Kansas City Hospital 6-11-2009

               Gavin’s situation gradually became more and more alarming as the NICU had to keep increasing his oxygen rate and in the meanwhile, his O2 stats were dropping and the percentage of carbon dioxide in his Arterial Blood Gas tests were rising. He moved on to an oxygen mask very quickly and was soon under an oxygen tent. His oxygen levels were at 35 percent supplemental oxygen at this point and we were growing very concerned. I should place some emphasis on that “very” above because we were pretty close to freaking out at this point. We didn’t have anything against North Kansas City Hospital, but we wanted and requested our son to be in the hands of the tried, tested and true experts at Children’s Mercy Hospital. The staff at North Kansas City Hospital called in their on-call pediatrician, the on-call doctor and the on-call neonatologist from Children’s Mercy Hospital to evaluate Gavin’s condition. They took a chest X-ray at which time the doctors noticed some fluid in Gavin’s lungs and attributed this to possible pneumonia.  The possibility of pneumonia meant that they needed to administer antibiotics and they did so as soon as the order for the meds arrived. The doctors also told us that Gavin’s current respiratory distress could be related to transitional issues as well, but once again, Heather had a bad feeling and she desperately wanted us to transfer to Children’s Mercy Hospital.  Heather and I had intense discussions in the hospital room amongst ourselves trying to decide the best way to get our son to Children’s Mercy Hospital. After speaking with the on-call pediatrician, she agreed that if and/or when Gavin reached 50 percent supplemental oxygen, she would request a transfer and he would be transported immediately to Children’s Mercy Hospital.

Gavin North Kansas City Hospital NICU 6-11-2009

                We spent a great deal of time in that small NICU room by Gavin’s side as our situation grew more and more frightening. Each tick upward in supplemental oxygen felt as if we were taking a step closer to the edge of a cliff and we didnt know exactly where that edge was. Gavin was breathing at a very rapid rate and his chest was sinking in at least an inch with every labored breath he gasped for. It was painful to watch. I cringed each and every time I looked at his chest, trying to imagine his pain and wishing I could make it mine. Once again, we found ourselves in yet another medical predicament with one of our children and we couldn’t even comfort him during this time. At first he was enclosed in a dome-shaped cover that went over his head and then an oxygen tent. This tent was a lightweight, yet rigid plastic which was formed around his head and draped down over the top half of his body so that the supplemental oxygen could be directed to his face without interfering with his breathing. Gavin was then placed in a see-through case and we were fortunate if we could even caress his hand or foot with one of our fingers through one of two small access ports. After we made the agreement with the on-call pediatrician, we were a little more at ease as we had an objective point in time to which he would be transferred, but by the time we made this agreement, our son was hovering around 40-45 percent supplemental oxygen. At approximately 1:30AM, the on-call pediatrician came into our room and told us that she no longer felt comfortable providing care for Gavin at the North Kansas City Hospital NICU. The Children’s Mercy Hospital transport team followed in right behind her and Heather woke me from my deep slumber explaining that I needed to get up and go…NOW!!! I kissed and hugged my wife goodbye and then followed the paramedics to Gavin’s NICU room where I watched and waited as they prepared him for transport. “My wife”, I thought, “I can’t leave her”, but she was just 12 hours out of delivery, she wasn’t going anywhere and no doctor in their right mind would release her.Gavin in NICU – June 2009

               I reluctantly watched as the paramedics loaded Gavin into the ambulance during this surreal moment. I didn’t know what to do. I was lost without my wife in this situation and I didn’t know the condition of my son’s health either. How long would I be at the hospital without her? What if she needed me to be there for her? I know I need her, but she was miles apart from her son and I, and she couldn’t even get out of the hospital. The ride from North Kansas City to Children’s Mercy Hospital seemed like an eternity. As we pulled away from the hospital, I felt an unwanted and undeserved sense of betrayal as I left my wife. My eyes were fixated on the passenger side mirror until I could no longer see the hospital’s exterior structure and then…only then did I start to turn my focus on what lie ahead.

Gavin-Children

               The paramedic driving the ambulance was great. He was skilled to the highest degree at diversion and kept my mind in the here and now. He helped keep my spirits high as my mind raced from thought to thought; speeding from conclusion to conclusion, from my wife, to my sick child in the back, knowing the only thing that was separating us was the metal interior wall of the ambulance. He was back there and he was hurting. I kept turning around expecting to see him, but nothing…I…saw…nothing. We arrived at the hospital emergency room area and something had changed during the short trip between the two hospitals. Something was wrong…really, really wrong. The paramedics had picked up their speed from the original pace and were moving swiftly with a sense of purpose. “What’s wrong?” I thought. How in the world did we get to this point? What’s happening? “SOMEBODY PLEASE TELL ME WHAT”S GOING ON!!!” I thought. The paramedics allowed me to have a brief moment with Gavin and off they went, to where, I didn’t know, and if or when I would see my son again, that I didn’t know either. I stood there in silence, in shockand in disbelief that this was happening.

               One of the paramedics took me to the NICU waiting room area and asked me to wait there and someone would be out shortly to speak with me. It was approximately 2:00AM in the morning. I had no one to call and my best friend was miles away, stuck in a lonely hospital room by herself. The hospital staff showed me to the NICU family room which was a small room among a plethora of doors which lined the NICU hallways. The room was pitch-black as I entered into it. I turned on the light and the room consisted of; a chair, loveseat, computer and desk, refrigerator, a shelf with an assortment of books and magazines, cabinet space, a small dining table with four chairs and a coffee table with a phone placed directly in the center of the glass top. The room was crowded for a single person, much less introducing multiple families to this area, but it was definitely homely. I was lost, lonely and afraid. I don’t like sitting and waiting in normal circumstances, but I couldn’t pace very far in this room and I couldn’t roam the halls as I was waiting on a report regarding Gavin’s health. I paced the room as far as I could, and then back and forth, back and forth and around the table; I paced for I don’t know how long. I nearly collapsed onto the loveseat, assuming a fetal position as I began to sob uncontrollably. After gaining my composure for a brief period of time, I placed my earphones tightly into my ears, selected Tenth Avenue North’s By Your Side and hit repeat on my MP3 player. I laid down on that loveseat, soaking it with tears of desperation and sorrow and began slowly falling away from God. I was angry and upset; I wanted to tear this little room apart in frustration. It took everything I had to not dismantle that room. It wasn’t about a single event though, but the onslaught of three separate tragedies, three separate children and three totally different medical emergencies.

 

Tenth Avenue North’s By Your Side

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don’t turn away

Why are you looking for love
Why are you still searching as if I’m not enough
To where will you go child
Tell me where will you run
To where will you run

And I’ll be by your side
Wherever you fall
In the dead of night
Whenever you call
And please don’t fight
These hands that are holding you
My hands are holding you

Look at these hands and my side
They swallowed the grave on that night
When I drank the world’s sin
So I could carry you in
And give you life
I want to give you life

(Chorus 2x)

Cause I, I love you
I want you to know
That I, I love you
I’ll never let you go

(Chorus 2x)

 
 
 
 
 
 
 
 
 

Gavin - Children

 

               I want to say that someone came for me around 3:00AM, but I had lost all consciousness of time and my surroundings; I was in a state of shock. A member of the hospital staff called out my last name. At first I thought I was dreaming, but I looked up from the loveseat to see a silhouette of a man standing in the doorway. “Am I dreaming? Are you talking to me?” I questioned, or so I thought. He seemed to ignore my self-spoken rhetorical questions and said, “Mr. Harris, I need you to come with me”. I reluctantly followed him as my mind began to clear from the groggily haze I was caught up in and I immediately began thinking the worst. What is he going to tell me? Where is he taking me? How am I going to tell my wife? I followed the man down the hall and into a room at which time he pulled up an x-ray on the computer screen. He explained to me that Gavin was experiencing severe respiratory distress and that he was in respiratory failure secondary to Pneumonia and tension pneumothorax along with a pulmonary hypertension component. This meant that Gavin had a hole in his right lung and it was leaking air out to his chest cavity. This outward force of air could not escape his body thus creating the tension pneumothorax which meant the lung was being forced into the heart causing the heart to become distressed as well. Sometime during or immediately following transport, Gavin’s right lung collapsed and immediate life-saving action had to be taken. The course of the following actions would determine if Gavin would take another breath or not.

Gavin - CMH NICU - June 2009

         

      The doctors had to do something to get this air out of Gavin’s chest cavity in order to release the pressure off of his right lung and heart and if they didn’t do it or do it quickly enough, he would die. The resident doctor plunged an air-evacuating 18 gauge needle in between Gavin’s second and third rib trying to clear the air…and…nothing. The resident plunged the needle a second time trying to evacuate the air and this time, 85mL of air from Gavin’s chest cavity was evacuated. The resident doctor plunged the needle into Gavin’s rib cage one more time and the attending doctor one more time as well, evacuating an additional 90mL of air which was pressing against his lungs and his heart. All in all, the doctors removed almost a cup of air from Gavin’s chest cavity. Imagine adding a measuring cup, one cup, in between an infant’s rib cage and their lungs. The doctors removed the immediate concern for now, but the pneumothorax kept recurring and a chest tube was inserted into his ribcage and sutured to hold it in place. I actually saw an image of the chest tube in the x-ray I was looking at as it punctured its way through his skin and ribs and into his chest cavity. The particular x-ray I was looking at had been used to make sure the chest tube was properly placed.

          

Gavin-Children

     I sat there motionless, expressionless and without words to say. My posture was slouched and my gaze stared empty at the x-ray before me. I guess the gentleman was expecting a different reaction, a different response, but I was growing numb. I had nothing; no words, no reaction, no response and no feeling. Attempting not to look cold-hearted, and especially because I wasn’t, I concocted a story, a true story nevertheless and explained it to him. I told him about my previous experiences with our other two children and chalked up my ostensible calmness to experience. The fact of the matter is that I was clueless, emotionless and shared the likes of the walking dead. I was a man who had abandoned his shell, the shell which sat empty before this gentleman. I was terrified, afraid, and lonely. All I wanted was to be with my wife. Did I mention I was terrified? I wasn’t supposed to be hearing any of this without her. I went back to the family room after this, laid down on the loveseat, reassuming a fetal position; as a matter of fact it was the exact same position as an hour earlier. I continued building a wall, brick by brick, layer by layer, a wall that would prove difficult to tear down. I built this wall to protect myself from the emotional trauma of the situation. My natural human instincts were kicking in, trying to protect my psyche and preserve my mind from further trauma. I knew Gavin’s situation was bad, but I would not have an idea of just how severe it was until my wife and I were reunited. Our reunion would come less than 12 hours after my departure from North Kansas City Hospital and this would be one of the longest 12 hours of my life.

               The family room was dark and as I laid down on the loveseat, once again I inserted the earphones tightly into my ears and pressed repeat on the MP3 player. I picked up right where I left off listening to Tenth Avenue North’s By Your Side. I grasped at anything and everything trying desperately to bring myself closer to God. I needed a strength and hope that went beyond the moment, beyond the situation and most of all, beyond me. I needed a strength that came from God. I had already called Heather prior to laying down, keeping her apprised of the situation as she was still at North Kansas City Hospital and I was at Children’s Mercy Hospital with Gavin. The one thing I didn’t know just yet was that when they placed Gavin’s chest tube, he was also intubated and placed on the ventilator. Prior to the ventilator, Gavin was on 100 percent oxygen and his O2 stats were still dropping below 80 percent. If you remember from Blake’s story, this prolonged exposure to low levels of oxygen can lead to permanent brain damage in infants. We also had no idea that at this point in time, Gavin was the top priority in the NICU and would be so for several nights. He was still in critical condition.

Peek-a-boo...He put that on there himself...Really.

               I floundered into some kind of somber mental state and all I wanted to do was sleep. I just wanted to close my eyes and sleep. This way I wouldn’t have to think about things. The charge nurse came in the family room and said that she could probably get me a bed in the Ronald McDonald House. She had already come in the family room several times informing me that I couldn’t sleep in there. So around 4:00AM I stumbled my way through the hospital halls to the Ronald McDonald House. I wearily punched in the access code she gave me and found the way to my assigned room. I was afraid to go to sleep because I knew I would have problems getting up. I set the alarm on my mobile phone, but I didn’t have a charger and my battery was nearing the end of a charge. I finally fell asleep, but I didn’t regain a conscious awareness until sometime around 10:00AM. Apparently, Heather was trying to reach me that next morning and the charge nurse didn’t leave any sort of note or indication as to where I was. I was missing in action to everyone else. Since the staff couldn’t locate me, they told Heather I wasn’t there. I finally woke up and spoke to my wife only to find out that Gavin’s condition had worsened and the medical staff was contemplating what to do next.

        

Gavin - CMH NICU 2009

       Heather made it to the hospital a little later that same morning just 18 hours after having a baby. I’m not really sure how she connived her way out of the hospital, but she did nevertheless. It felt awkward and weird going through all this experience and not being able to hold and bond with your own child. Gavin’s condition continued to worsen and the doctors had one last option as the tension pneumothorax kept recurring. We weren’t sure if we would ever get to hold our precious little child again. The doctors were even beginning to sound skeptical at this point. The hope that once protruded from their voices was diminishing from their spirits. Heather even asked the doctor about breastfeeding since she was pumping all this milk and investing all this time. At one point she had such a surplus of breast milk that we began throwing it away. When she asked the doctor about stopping (knowing that Gavin may never feed from it) he said she should keep pumping and maybe it would give her some sort of purpose, making her feel like she was contributing to the effort. She pressed the matter further and the doctor told us that everything was hour by hour at this point in time and they were doing absolutely everything they could; every resource and every tool they had at their disposal was being used, well almost every resource. The doctors had one last eleventh-hour effort before we had to realistically consider our options ; just how long do we allow this to go on? At what point have the doctors done all they can do and Gavin has taken all the stress that his feeble little body can take? Would we have to make the choice to pull the plug on our own son? Would we have to end life support? We began having these discussions with the doctors as our fears became closer and closer to reality.

               The doctors had to place Gavin on their eleventh-hour effort which happened to be the oscillator. This machine allows the lungs to function differently which limits the impact of trauma on the affected area. The doctor asked my wife if she knew what an oscillator was and he wasn’t ready for her answer. Her response back to the doctor was, “I know that I have hardly seen anyone come off of one”. The doctor was taken aback with a surprised look on his face as if he didn’t know how to respond. He was able to come back with some reassurance, but how reassuring can you be after not only having, but engaging such a discussion. Even though the situation had worsened, I was relieved and my emotional state had improved since my love and life partner, my wife was once again by my side. We truly are a unit, WE ARE ONE!

               Respiratory failure takes on a unique pathology in infants. There are many conditions which doctors can do amazing things with the body and keep it functioning while they fight on for answers. Respiratory issues can often be a different story. The child can work so hard at maintaining their breath and life until they come to a point when they are no longer able to sustain this effort. At this point, they will simply give up and stop breathing altogether. There are no life-saving measures or CPR that can be done at this point. When they give up, they give up. While this is not necessarily  a medical definition or a professional explanation, this is exactly how our doctor explained it to me after I asked him at what point do we think Gavin has had enough. I was beginning to accept the reality of and what could ultimately happen should Gavin’s body give up.

      

Someone loves their Teddy Bear

         I never thought I would be in this place. Even with the previous two medical conditions of our first two children, I never contemplated ending life support functions. Thank goodness that while this was becoming a reality, it was more of a fleeting thought in our minds and the doctors had yet more work to do. The oscillator actually seemed to be just what Gavin’s lungs needed. The ventilator allowed his lungs to deflate too much causing undue stress on his pneumothorax. The oscillator kept his lungs inflated so they didn’t have to work as hard, giving the pneumothorax a chance to heal and this was just what his body needed. The pneumothorax was decreasing which meant his lung was healing. The true test would come when it was time to remove the chest tube and start weaning him off the oscillator. Gavin had to have blood drawn from his heels for Arterial Blood Gas tests multiple times per day, every four hours to be exact. These tests were performed so the doctors could check the carbon dioxide to oxygen levels in Gavin’s blood stream. It is one thing to have low O2 stats, but when the body cannot exchange the CO2 for oxygen, things begin getting ugly real quick. His poor little heals had been poked so many times that they literally were starting to look like hamburger meat. The resident doctor and even an attendee made three separate attempts at starting a central line to try and give Gavin’s heels a break. Starting a central line is a very painful procedure because the blood has to come from an artery and not a vein, but all three attempts failed miserably. We anxiously awaited 10-15 minutes for the procedure to be completed as this was how long the doctors told us it would take. We sat with immediate family members in the waiting area and went from relieved, that Gavin was getting a central line to give his heals a break, to frustrated and mad that our child was being used as a guinea pig for the resident to learn on. After an hour of poking and prodding, the medical staff finally determined that they were doing more harm than good and ceased trying.

        

Somebody

       We went to the hospital to give birth on a Thursday and by Friday, our son was on life support and that first night and second day he needed further intervention to save his life. He was placed on the oscillator on Saturday and for the next five days, we questioned whether or not we would be taking our child home, just as we had taken our other two children home after their experiences. The only true way to see if Gavin was getting better was for the medical team to put him to the test. The doctors clamped the chest tube and began monitoring Gavin’s pneumothorax at which time there was minimal recurrence. My wife and I were reluctant about the procedure and insisted the doctors take another chest x-ray and continue to do so until they were 100 percent certain there would be no relapse. They insisted this was normal and that everything was going according to protocol at this point. Gavin’s pneumothorax DID NOT progress any further and the doctors began to decrease his reliance on the oscillator. This is always a scary moment as this is the moment you are waiting for, but dread at the same time; however, this dread would be short-lived.

               When Gavin came off the oscillator, he did so with a fierce resiliency. He bounced back tough and within 24 hours he went from an oscillator to a nasal canula, just as fast as he declined, he bounced back just as strong. The doctors were amazed at this display of defiance that Gavin was demonstrating. We were ecstatic and joyful that he not only recovered, but did so with such tenacity. On Father’s Day 2009, I received the best Father’s Day gift up to this point and probably ever, as we were moved out of the NICU and into a regular room on the fourth floor. We were almost home. After almost two weeks in the hospital, we headed home with our not-so-new infant so we could begin integrating him with the rest of our family.

Almost out of the NICU

               The emotional wall I built while in the hospital was tall and strong. I approached God from a distance for a long time, a year and a half to be exact (If you’re wondering, that is the present day). Until now in this moment that I write this blog, I have begun tearing these bricks down one by one. I am destroying the façade which was built on that family room loveseat the night that Gavin was born. I had spent many days in a children’s hospital up to this point, but this experience would impact me the most. This was the collective end to three separate medical traumas. The experiences are like snapshots in my mind. The images and memories are embedded deep within the electrical circuitry of my brain, but one particular experience stained my mental imagery and is embedded in my mind like a scar on the flesh to this day. The several weeks I had spent in a children’s hospital setting over the last several years brought about many experiences before me, but this time introduced me to an entirely new experience altogether and a new perspective to my way of thinking. I had never heard the wailing cries of a grieving mother, at least not until Gavin was born and hospitalized. This mother’s cries poured out from the hospital walls and the door of a private room that all of a sudden wasn’t so private anymore. I imagined her tears hitting the carpet as I know mine would have been and all I wanted to do was hug her. Family members lined the hall of the NICU, presumably to have one last moment with their child, grandchild or some other relative and to console one another.  Everything was suddenly put into perspective. The one thing I hope I never hear again is that sad and painful cry deep from within a mother’s soul. I cannot even begin to adequately explain how it tears at your heart.

 

Nothing Like the Bond Between Mother and Child

              No matter how bad things are or seem to be, they can always be worse. Gavin’s health was poor, but this family had lost their hope. Their hope was now in another world while we still had our hope in this world to cling on to. Gavin was still fighting and this ultimately forced us to fight right there along with him. We never gave up or lost hope, even when all hope seemed to be lost. Even if at times we were hanging on to hope by a thread, this grieving mother had lost even that; no rope…no string…no thread…no hope. She would eventually leave that hospital with empty arms and without the joy of her life.

               Gavin is now 18 months old. He is by far the most active of our three children and is into any and everything he can get his grubby little hands onto. His smile never fades and for having two older brothers, Gavin holds his ground pretty well. The one thing we really struggled with again during this time frame was how to meet the needs of not one additional child, but two additional children. We had one child who could somewhat understand the critical nature of the situation and the other who was still clinging to his ego-centric principles. Most of our visits with the boys were spent in the hospital waiting room as they played with community toys and managed to annoy other families waiting for time with their loved ones. I was able to sneak away to one of Blake’s baseball games, but you could tell this time that the thought of mom and dad being gone all the time with little brother was visibly weighing on their minds, regardless of the circumstances.

               So, third time is a charm…right? This is kind of what we thought as well. Then again, it is just a saying, a saying that concludes not in a specific number, even though it does use the numerical value of three, but a saying that concludes with perseverance. It’s kind of like the saying if at first you don’t succeed try again. What it is really saying is to keep going, never give up. It doesn’t matter if it relates to your parents, your children or your relationship with God. The only thing that matters is that you never give up. Don’t lose hope in yourself or others, for when you do, that is the moment you lose yourself, just as I did that lonely night on the family room loveseat. God is all about first, second and third chances. How about you? Are you ready for a second or third chance at life? Maybe the third time is a charm, then again it could be the first or second time, but you may never know what could be missing from your life until you try.

 

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