Slaying Goliath and Coming Home
Kyle's homecoming was anticipated during Brock's spring break and it could not have been scheduled at a more convenient time for our family as Clarke had already taken the week off from work. Kyle was doing awesome. At nearly 8 pounds, he had only one last developmental hurdle to conquer before the his doctors would order the car seat test and sign the discharge papers. Ordinarily, preemies master bottle feeding before breast feeding, but Kyle proved the exception and the occupational therapists were working to help Kyle master the bottle. Everything looked promising until the last Saturday in March. Clarke and I headed to the hospital to take the infant CPR class and hang out with our littlest dude; we eagerly discussed his homecoming and all the necessary preparations that needed to take place. Kyle's nurse was changing his diaper as we arrived and she casually asked if his belly ordinarily looks distended. Alarms were sounding in my head before I even made it to Kyle's bedside to examine his rounded abdomen; I simply knew too much about bowel complications at that point to play ignorant and remain hopeful. The nurses, sensing my growing anxiety, tried to downplay the situation and said that the neonatologist would examine Kyle and determine what was going on. Try not to worry, she counseled.
This momma knew better, though. This momma knew too much.
The neonatologist, the same doctor who had attended to Kyle's birth and his previous surgeries, was alarmed when she arrived to visit Kyle, as she was well acquainted with his history of complications. Kyle's bowel has been his Goliath since birth and this new development was especially devastating as he was so close to coming home. A series of x-rays and blood tests were ordered, IVs were placed in his hands, feet and his skull and Kyle was once again housed in an isolette; his behemoth size created cramped quarters of his isolette. Kyle's feedings were stopped (he was receiving IV nutrition, though). Numerous tests and procedures were performed to try and determine the reason for Kyle's sudden illness; it was a suspected viral infection. For 12 impossibly long days, Kyle endured twice-daily x-rays and blood tests and the doctors conferenced daily with the pediatric surgeon. Kyle cried constantly as he was starved of milk; it was soul crushing to watch, helplessly, as he struggled and starved and cried out in hunger and pain. As a mom, I was brokenhearted.
Brock had been struggling, behavior-wise, and Clarke and I felt it would raise his spirits to hold his baby brother for the first time. It worked wonders.
Preemies with bowel surgeries and complications have their girth measured at each set of cares (every three hours of so) and any changes could determine a problem. Kyle's girth normally measured around 30cm. It was 35cm when we arrived that fateful Saturday morning. You can see his distended belly in the image below. He also had an incisional hernia and an umbilical hernia, which created a very "lumpy" looking belly.
During this tumultuous stretch of time, Kyle graduated into the 100 days stronger club; a program sponsored by the March of Dimes. I had hoped to avoid this milestone by bringing him home before then, but circumstances bumped his NICU stay into the triple digits. There was cake and gifts and a banner commemorating the milestone. Given his difficult start, it was remarkable how far he had come and how strong he had grown, so the "celebration" was bittersweet.
On April 2nd, his due date, Kyle was wheeled down to the operating room for his third major surgery. I was frustrated and furious that the surgeons tried everything they could to avoid surgery and therefore Kyle suffered for almost two weeks, when, in fact, it turned out that he NEEDED surgery. (However, I also understand that surgery on babies should be a last resort.) The surgery took nearly 5 hours and Clarke and I were literally pacing and clock watching the entire time. We met with the surgeon for a post-op conference where he told us that Kyle had a bowel stricture (obstruction) and adhesions, from his previous surgeries, that had caused Kyle's sudden illness. The surgeon also repaired an incisional hernia, a rather large umbilical hernia and removed 10cm of small intestine, as well as Kyle's appendix. Recovery was expected to take 10 days and Kyle's outlook was good.
Intubated once again. I have a hate/hate relationship with the ventilator. Did I mention how badly I hate it? Now, don't get me wrong, I understand and respect the need and effectiveness of a breathing apparatus, but it was also was a constant reminder that my baby was sick and breathing on his own was too taxing on his weakened system. My hate for the ventilator was born more out of frustration than anything. Just seeing these images bumps up my blood pressure a bit.
Clarke and I accompanied Kyle, his nurse and the respiratory therapist (who was using the "balloon" to breathe for Kyle as they had to unplug the ventilator to move him) to the operating room.
Intubated once again. I have a hate/hate relationship with the ventilator. Did I mention how badly I hate it? Now, don't get me wrong, I understand and respect the need and effectiveness of a breathing apparatus, but it was also was a constant reminder that my baby was sick and breathing on his own was too taxing on his weakened system. My hate for the ventilator was born more out of frustration than anything. Just seeing these images bumps up my blood pressure a bit.
Kyle spent his first four post-op days intubated and on morphine. Numerous tubes and cords snaked their way from the isolette and spread in every which way to monitors and machines. On day five, as his morphine was reduced, he woke up and decided he was absolutely, positively done and extubated himself--pulled the ventilator tube right out of his own throat! He also pulled out his catheter and two of his IVs! The following weeks were difficult, maddening even, as Kyle was denied milk. The crying and discomfort was almost too much to handle. His surgeon wanted to be certain that Kyle's intestines were healed enough to accommodate feedings and then Kyle's feeds were stepped up slowly; consequently, he was was continually hungry and made life understandably miserable for everyone in the NICU. Fortunately, the nurses are angels and spent hours and hours rocking him and, at night, they would bring him out to the nurse's station where they would take turns holding him so that he could sleep between his minimal feeds.
Immediate post-surgery Kyle. It had been such a long, stressful day for all involved and there was still so much to be done for him, including placing another picc line. Clarke nearly passed out after the neonatologist explained, in detail, how she would place the IV. (Every available vein had already been tapped for an IV and this picc line would involve making an incision and finding a vein that way. Thank heavens my poor baby was so doped up on morphine that he slept comfortably through that procedure.)
Immediate post-surgery Kyle. It had been such a long, stressful day for all involved and there was still so much to be done for him, including placing another picc line. Clarke nearly passed out after the neonatologist explained, in detail, how she would place the IV. (Every available vein had already been tapped for an IV and this picc line would involve making an incision and finding a vein that way. Thank heavens my poor baby was so doped up on morphine that he slept comfortably through that procedure.)
At last the day came when we were asked to bring Kyle's car seat in preparation for bringing him home. Oh happy day! On Sunday, April 13th, NICU day #120, Clarke and I climbed into our car and made our last "routine"drive to the hospital. We had undoubtedly made the 25 minute drive from our house to the hospital and back, well over 200 times, spending upwards of two hours a day commuting back and forth! Kyle was being circumcised when we arrived that Sunday morning and we began stripping his walls and cabinets of decorations, pictures, stuffed animals and emptied the drawers of his clothing as we waited. We filled seven bags! It seemed surreal that after four months in the hospital, we were FINALLY bringing our baby home. There were plenty of discharge instructions and procedures to discuss and a "watch and wait" post-circ period where Clarke and I took turns rocking our son and counting down the minutes when we could buckle Kyle into his car seat and say our goodbyes.
"Look Ma, no tubes or cords or wires!" Our baby was finally off the NICU grid. ;)
Kyle's coming home outfit:
The NICU nurses are truly phenomenal human beings and in many ways, they had become part of our daily routine, part of our family. We entrusted our sweet Kyle to their care for 120 days and nights and we were confident that he was the recipient of never-ending love and attention when we were not there to provide Kyle's care ourselves. Saying goodbye was bittersweet. We brought in boxes of See's chocolates for the NICU staff as a small token of our immense gratitude and there were plenty of hugs and tears as we carried Kyle out of the NICU.
As we were preparing to buckle Kyle into his carseat, his nurse gave him his daily dose of Poly-Visol (the smell of that stuff gives me the heebie jeebies, belch!) and then she stuck his paci in his mouth to help him swallow the vitamins. The result was a poly-visol mustache.
There were balloons and a welcome home banner, not to mention squeals of excitement when we returned home, carrying Kyle through the door. Brock had met Kyle on a handful of occasions, but Camryn had never met her baby brother. She was instantly smitten!
Cami went into immediate share mode when Kyle entered the door.
Brock was jumping with excitement to hold his baby brother. Cami was fascinated.
True to form, Kyle began to howl and poor Cami was horrified. She burst into tears as well.
It took some explaining, but I think Clarke finally convinced Cami that she didn't hurt Kyle. Babies just cry, he told her.
There was a lot of "I want to hold him" that day. First Brock, then Cami. Then Cami again. Then Cami once more. Then Brock. And so on. It did my heart good to see Brock and Camryn literally embrace Kyle. They adored him!
Kyle has now been home for two months.
Given his last and most difficult month in the NICU, it's easy to imagine why Kyle is not only a restless and inconsistent sleeper, but also colicky. We're working on both issues and I am constantly reminding myself that this rough road will give way to smoother ones in the near future. I find myself drinking in the scent of his baby hair and the feel of his soft skin, longingly, as he is our "caboose," the final child to complete our family. He has just begun smiling and cooing and giggling--right on cue for his adjusted age. His older brother and sister can't get enough of "Baby Kyle." Brock is always eager to hold Kyle and works hard to elicit smiles from his baby brother. Camryn smothers Kyle in kisses. She doesn't care for him in any other capacity than as a ready target for her sticky smooches.
We are thankful beyond beyond description, a reverent, wordless gratitude for our son's survival. Kyle is a physical manifestation of the power of prayer and the grace of our Heavenly Father.
When I reflect on the complications and challenges of Kyle's pregnancy, his unexpected and frighteningly early arrival and the following months of wonder, worry, tears, stress and frustration, intermingled with joy and hope, I marvel that Kyle is home with us now. Small, but healthy, and void of extra oxygen, monitors, medications and a feeding tube, as is customary with many babies born at the edge of viability. He is an undisputed miracle.
Our son, Kyle.
The boy who lived.
"Look Ma, no tubes or cords or wires!" Our baby was finally off the NICU grid. ;)
Kyle's coming home outfit:
The NICU nurses are truly phenomenal human beings and in many ways, they had become part of our daily routine, part of our family. We entrusted our sweet Kyle to their care for 120 days and nights and we were confident that he was the recipient of never-ending love and attention when we were not there to provide Kyle's care ourselves. Saying goodbye was bittersweet. We brought in boxes of See's chocolates for the NICU staff as a small token of our immense gratitude and there were plenty of hugs and tears as we carried Kyle out of the NICU.
As we were preparing to buckle Kyle into his carseat, his nurse gave him his daily dose of Poly-Visol (the smell of that stuff gives me the heebie jeebies, belch!) and then she stuck his paci in his mouth to help him swallow the vitamins. The result was a poly-visol mustache.
There were balloons and a welcome home banner, not to mention squeals of excitement when we returned home, carrying Kyle through the door. Brock had met Kyle on a handful of occasions, but Camryn had never met her baby brother. She was instantly smitten!
Cami went into immediate share mode when Kyle entered the door.
Brock was jumping with excitement to hold his baby brother. Cami was fascinated.
True to form, Kyle began to howl and poor Cami was horrified. She burst into tears as well.
It took some explaining, but I think Clarke finally convinced Cami that she didn't hurt Kyle. Babies just cry, he told her.
There was a lot of "I want to hold him" that day. First Brock, then Cami. Then Cami again. Then Cami once more. Then Brock. And so on. It did my heart good to see Brock and Camryn literally embrace Kyle. They adored him!
Given his last and most difficult month in the NICU, it's easy to imagine why Kyle is not only a restless and inconsistent sleeper, but also colicky. We're working on both issues and I am constantly reminding myself that this rough road will give way to smoother ones in the near future. I find myself drinking in the scent of his baby hair and the feel of his soft skin, longingly, as he is our "caboose," the final child to complete our family. He has just begun smiling and cooing and giggling--right on cue for his adjusted age. His older brother and sister can't get enough of "Baby Kyle." Brock is always eager to hold Kyle and works hard to elicit smiles from his baby brother. Camryn smothers Kyle in kisses. She doesn't care for him in any other capacity than as a ready target for her sticky smooches.
When I reflect on the complications and challenges of Kyle's pregnancy, his unexpected and frighteningly early arrival and the following months of wonder, worry, tears, stress and frustration, intermingled with joy and hope, I marvel that Kyle is home with us now. Small, but healthy, and void of extra oxygen, monitors, medications and a feeding tube, as is customary with many babies born at the edge of viability. He is an undisputed miracle.
Our son, Kyle.
The boy who lived.
