5lbs 13oz
35 weeks, six days gestational age
Two and a half months actual age
80 days, so far, in the NICU
***
As you approach the elevators that take you to the neonatal intensive care unit, you encounter a sign with arrows pointing up and down and the letters NICU beneath the arrows. Universally, they indicate that in order to reach the NICU, one must take the elevator (or arrive out of breath should one choose the stairs). The arrows might also, and quite ironically, represent the NICU itself, a unit made up of electronic wombs, beeping monitors, scrub-clad nurses hurrying from one baby to the next and the fragility of new life, in the ups and downs of what is known as the roller coaster experience of a lifetime.
Kyle has experienced soaring highs and the thud of devastating lows these past few weeks. His symbol might be that of the elevator, that of the NICU, that of a roller coaster.
The steady and promising growth of the past month, interlaced with weeks of greatness and limited complications, met with unexpected catastrophe one Tuesday evening. It was just after 8pm when I arrived at the NICU for some late night snuggles with my baby and I approached Kyle's isolette to find that everything was completely as it should be, sweet preemie sleeping soundly. His monitors indicated that he was holding stable, dependably characteristic of Kyle. His night nurse met me with a smile and explained that Kyle had a great afternoon. I calmly readied myself in the maroon rocker to receive the swaddled baby boy the nurse was removing from the quiet warmth of his isolette. "Kyle's stoma is a bit swollen today," the nurse continued as she placed Kyle in my arms. "Oh, okay." I said. No frantic phone calls from the NICU had come across my caller ID, so I knew it must not be too concerning.
Pause the story here. Do you know what a stoma is? I was admittedly ignorant about the term before Kyle's bowel perforated at 5 days of life (a life threatening condition for preemies called NEC), triggering his first emergency surgery. During that surgery, the surgeon found that 3cm of Kyle's intestines had died and needed to be removed. The necessary cuts were made and deceased intestine removed. Reattaching the live intestines was not an option, however. As it was described to us, reattaching the intestines would be like suturing together two wet pieces of tissue paper. Ultimately, Kyle's body was too little and under-developed to endure such a surgery with any modicum of success. So, the freshly cut end of his upper intestine was left on the surface of his abdomen (this is called the stoma) and the freshly cut end of the lower intestine was tucked just below the surface of incision. An ostomy bag was then attached to Kyle's stomach, around his stoma, to capture his waste (poop!). Plans were made to reattach the intestines when Kyle was around 6 months old.
You can see the stoma in this image from January:
Back to our story.
As I was rocking Kyle, his neonatologist poked her head through the curtain and asked if she could examine Kyle before she left for the night. She undid the buttons on his sleeper as she explained that his stoma was a bit swollen, but still looked pink and healthy. Nothing prepared me for the swelling. The stoma was only about 1cm x 1cm on a regular day. Swollen, it looked to be about 3cm x 3cm. I was shocked, and understandably panicked. "We'll just keep an eye on it," Kyle's doctor reassured me. An uneasy feeling began to settle upon me. This was MY baby. My Kyle. My preemie who had already been fought his way through unimaginable trials that would weaken the strongest adult.
Following a cozy three hour snuggle, as Kyle's nurse was returning his sleepy little body to the comfort of his isolette, I noticed three alarming things about my son. First, his stoma was now swollen well into his ostomy bag, about 5-6 cm, and it had begun to turn dark red, almost purple. There was also blood in his ostomy bag. The nurse glanced quickly at the bag and the stoma and immediately summoned the charge nurse. The flurry of activity that ensued was dizzying. Kyle's doctor was called back to the hospital. The pediatric surgeon was roused from her sleep to answer the emergency call of the charge nurse. Everyone on the floor began prepping the unit for immediate surgery (instead of transferring tiny and fragile NICU patients to the operating room, the operating room is brought up to the NICU and the procedure is performed at the bedside of the baby). Apart from holding his hand and biting my lower lip to keep from crying, my only other job was to call Clarke and tell him that our son was, once again, not only a NICU patient, but a surgical patient.
Surgery commenced at 1am on Wednesday morning. Clarke and I sat in the darkened waiting room, muscles tense, trying to make light conversation. We KNEW Kyle would pull through this, but at what cost? Ninety minutes later, the surgeon exited the NICU and made her way toward us. First of all, she assured us that Kyle was okay and sleeping comfortably. Whew. Then, she said that she had to remove 7cm of dead intestine and that she went ahead and reattached his intestines. I wanted to hug her, partly in blessed relief for saving my baby's life and partly because I wouldn't have to care for his stoma and ostomy bag when he came home. Later, when asked about Kyle's lack of intestine, his neonatologist assured us that we are all born with an over-abundance of intestine and that he would function just fine. This was a surgery that Kyle would need anyway, but not necessarily under these circumstances or at this gestational age.
Kyle had been doing so well. He was breathing room air with the help of a cannula. He was gaining weight. He was supposed to begin breastfeeding and now this. Major surgery for a preemie is not the two steps forward, one step back approach of most NICU experiences, but rather two steps forward, five giant leaps backwards. Kyle was now back on the ventilator, heavily sedated, and his feedings stopped for 5 days (he received necessary nutrition through one of his THREE IVs). He would have to start over with his feeds, getting barely a trickle of breast milk to begin with (remember his lower intestine had not had ANY use and was a much narrower size than his upper intestine, so introducing milk (feeds) slowly was essential).
For three days, we watched helpless, as our infant son fought against the waves of sedation and pain. The mere action of turning his head from one side to the other required two nurses and a respiratory therapist. He aspirated during one such "turn"and we watched, absolutely terrified, as Kyle's heart rate and oxygen rate plummeted. For twenty minutes, they worked on our preemie to restore him to stability. It was horrifying to watch, but we were unable to walk away. What if...
The simple act of touching his foot would cause him to desat (oxygen saturation levels would drop). He was unbelievably fragile. Breakable. And we could do nothing about it, but sit by his bedside and stare at his motionless body or at the monitors, seeking solace in numbers.
On the following Saturday morning, I received a phone call from the NICU. Kyle was still under sedation, on the ventilator, and now required a blood transfusion to combat anemia. Clarke and I sat next to his isolette that afternoon, watching, as a tube of thick blood snaked it's way from a giant syringe, through the picc line and into the limp body of our son. For two days, they had promised to wean Kyle off the ventilator (prolonged ventilator use often results in chronic lung disease, so the less machine breathing, the better), but he was still so delicate that he required the extra sedation. I felt as deflated as Kyle looked.
Two and half weeks have elapsed since Kyle's surgery. He is doing awesome! He made it two weeks without a cannula, breathing entirely on his own. Now, he only needs an extra boost of oxygen during his feeds, so he is back on the cannula, but it's a teeny tiny cannula this time. His feeds have been restored to "full" feeds--or the amount that a baby his gestation would normally receive. He is slowly gaining weight. His color is pink and healthy. His cheeks are chubby. Last Monday, Kyle had his first "real" bath--he loved it. His scar is healing wonderfully. Ky is now too big for his preemie clothes and has outgrown preemie diapers as well. He was also moved from his isolette into an open-air crib!
His last preemie outfit..
Believe it or not, but Ky has also outgrown his minion hat.
Breastfeeding is Kyle's current challenge (bottle feeding comes next). A preemie's ability to swallow and breath simultaneously is still underdeveloped at 35 weeks gestation and, as such, it's a slow process. He really likes to nurse, but he forgets to breathe while nursing, so his apnea alarms begin to sound and we have to wait for his stats to stabilize before going at it once again. This hiccup will improve as he matures. By 37 weeks gestation, he should be able to master breathing and swallowing without a problem. In the meantime, we soldier on--with the help of lactation consultants and occupational therapists.
Do you know what this means? There is a light at the end of the NICU tunnel (and it's not that of an oncoming train)! Kyle's doctors and nurses are already throwing around phrases like "when he goes home..." "when he is discharged..." and etc. On Sunday, he was moved from the space reserved for the most critical NICU patients (right next to the nurse's station) to a quiet corner next to a window. It's the space reserved for babies who are almost ready to go home! We spent the first 77 days of Kyle's life, sitting amongst the nurses, watching couple after couple exit the NICU with their healthy babies. Kyle has had many "neighbor" babies whose stay in the NICU was short. We've watched as babies have been moved to "window suites" in preparation to go home; and all while sitting there with our little warrior, wondering when Kyle would no longer be considered a critical patient. It's exciting and nerve-wracking to realize that our preemie's NICU days are numbered. There is some criteria that he must meet before we'll have a possible discharge date, but they're a pittance in comparison to what Ky has already had to endure. His April 2nd due date is now less than a month away and we hope to have him home by then.
