Jack Michael Engelter
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It's hard to believe it's almost been a year since we brought our baby boy home from the Holden NICU at the University of Michigan hospital in Ann Arbor. That was the longest month of our lives. The whole experience was overwhelming. As new parents, we were terrified to bring him home when we assumed he was healthy! What a difference a year can make! Never were truer words spoken.
After 8 weeks on bed rest, I gave birth to a 6 lb. 13 oz. baby boy. I was so exhausted and had lost so much blood, that the first 48 hours are a blur. He was breathing a little too fast, so they took him to the Special Care Nursery following his birth, assuring us everything was fine. Later that evening, he joined us in my room. The three of us slept soundly through the night - at least 8 hours!
The second night, however, breast milk/colostrum just couldn't satiate Jack. After what seemed liked hours, a nurse suggested we try a bottle. He would gulp it down only to choke and sputter. She agreed that something wasn't right, but he finally went to sleep. The next morning when I awoke, he was gone! My husband came back from getting the car seat installed and asked where the baby was. I didn't know! My second day as a mother and I had all ready lost the baby! Mike checked the nurse's station and was told that Jack had been admitted to the Special Care Nursery. His pediatrician suspected pneumonia, but assured us he would be able to go home in a week or so. Devastated and uneasy, we left our newborn at the hospital and went home empty-handed. It was so hard to face the vacant bassinet in our room and the silent nursery upstairs.
When he was 6 days old, his pediatrician, Dr. Hakim, decided to do an upper G.I. Feeding him made even the most experienced nurses in the SCN nervous. They suspected something was wrong with his suck, swallow, breathe coordination, but had no idea what. Dr. Hakim could not figure it out either, so Jack was transported to the University of Michigan Hospital in Ann Arbor, 50 miles away. Things just kept getting worse. I cried to my mom on the phone that I just wanted to hear some good news for a change. Nothing seemed to be going right for him.
The NICU doctors were very abrupt. They assaulted us with terms like TEF, upper GI, and direct laryngoscopy, asked us if we had any questions, and then rushed off, leaving us dazed and confused. We learned to rely on the nurses for explanations and empathy. They were our shoulders to lean (and even cry) on and our liaisons to the elusive docs.
Around Day 6, it was determined that Jack had been born with a laryngeal cleft a.k.a. a laryngotracheoesophageal cleft or LTEC. The good news was that they knew what it was, the bad news was they weren't quite sure how or even when to fix it. Originally, otolaryngology decided to wait until Jack was about 18 months old, so his throat could grow. We learned how to feed him via his g-tube and how to take care of the "hole" (stoma) in his belly - I didn't think I would ever get used to that! Finally, our baby was coming home! We prepared ourselves, the dog, the car seat, etc. and re-packed his "coming home" outfit for what seemed like the umpteenth time only to arrive and find out that the speech language pathologists had balked at the idea of a baby not eating by mouth for a year and a half. Apparently, there had been a meeting of the minds (present company excluded) and it had been determined that endoscopic repair would be attempted 3 days later, December 20, just 5 days before his first Christmas.
Saying "good-bye" to Jack before he was wheeled down to the O.R. was the hardest thing I have ever had to do. I tried to suppress the "what-if's" racing through my mind, but it didn't work; I was terrified I would lose him before I really even had him.
We had no idea what a trach tube was. We received what felt like a crash course in suctioning, changing the tube, infant CPR, stoma care, etc. but nothing prepared me for the first time I saw him with all of that blue aerosol tubing coming from his tiny little neck. When he opened his mouth, an eerily silent wail escaped. His loud cry had been replaced by what sounded like someone crumpling a plastic grocery bag. I felt as if someone had punched me in the stomach. Mothers are supposed to protect and care for their babies, and I was failing my son miserably. Never in my life had I experienced such pain or uncertainty. I wanted my own mother to hold me and tell me it would be okay, but she was 4 hours away and I was faced with the reality that I was the mom now. It was during this time that my husband and I discovered that we really could depend on one another in good times and in bad, in sickness and in health.
We spent New Year's with a group of Mike's old college friends, but left in time to be able to ring in 2002 with baby Jack. The nurses were great. They took our picture and didn't mind that we woke him up for the countdown to midnight. I wished with all my heart that 2002 would be easier for him.
We were very fortunate that he only had to be admitted to the hospital one time for pneumonia. Other than that, we returned to U of M for just a few scheduled visits. We learned to adapt to caring for a baby with a trach and g-tube. Jack was our first, so we didn't know any different and neither did he. He was so much quieter than other babies because he didn't cry out loud. Since we were able to feed him without waking him, he slept through the night from the first night we brought him home. Feeding on a schedule took a lot of guesswork out of figuring out if he was hungry or not. Also, I could determine how much to feed him based on his weight.
On January 31, 2002 Jack returned to the O.R. for another DL/bronch. We were shocked when his surgeon, Dr. Robert A. Weatherly, came out and told us that the repair hadn't held at all, not a stitch. Somewhere in the back of our minds, we still believed that bad things only happened to other people and that we had done "our time". We had dealt with secretions, stoma care, and venting with a syringe long enough. They had said possibly 3 months and we had let ourselves cling to that hope.
The next 8 months were fairly uneventful medically. Developmentally, Jack was right on track, which we were so grateful for. Most people who meet him are surprised how "normal" he is. It's hard when you feel like people are concentrating on what is "wrong" with your child, instead of what is right. I am so proud of my son. I think he is adorable. I think he is perfect. I get defensive when people tell me I will forget all of this. Why would I want to forget the first years of my son's life? Each moment is precious - learning to crawl, cutting his first tooth, waving "night-night" to the dog, DL/Bronchs, "trading in" his g-tube for a Mic-Key button, etc. My mom bought me a Boyd's Bear figurine that reads, "First times only happen once." That is so true. I want to remember each moment, but all ready that first year is fading. My baby has been replaced by a bright, happy, energetic toddler.
September 5, 2002 Jack underwent a laryngotracheal reconstruction (LTR). Prior to surgery, he was unable to vocalize, so he clicked his tongue and blew raspberries. Never have I heard a sweeter sound than the soft "raspberries" he blew when he started coming out of sedation. Underneath the bandages, probes, and tubing, my baby boy held onto his spirit! He ended up having to stay in the hospital for 13 days, longer than expected, because he was having problems with the stent that was holding the repair together. It caused him to gag and vomit during almost every feeding. Finally, his secretions returned to base line and the vomiting subsided to what was considered an acceptable level, so we were able to return home.
Except for the vomiting, which continued until the stent was removed, we resumed our normal routine. It was wonderful to be at home in our own beds after 12 nights away.
January 31, 2003, exactly one year from his first bronch, Jack returned to the O.R. for another and left with a trach one size smaller, the first step towards decannulation! We were also given a cap to start using on Valentine's Day. We are cautiously optimistic that he will be decannulated late spring or early summer.
Update, February 2003: Capping got off to a slow start. The nurse practitioner had suggested an initial goal of 15 minutes, but none of us could get it off fast enough after just three. The next night was a little better - 5 minutes, but 48 hours felt like an insurmountable goal. Then, we took about a 2-week break because Jack contracted pneumonia. Once he recovered, we resumed at the same cautious pace, but after 2 days, he accelerated to 27 minutes, then 70! We will continue capping in longer time increments until he can make it 48 hours (except when sleeping).
Since the beginning, we provided Jack with oral stimulation by dipping his pacifier in whatever we were eating or drinking. It didn't take him long to learn to hold out his pacifier if he wanted a taste. He now "dips" on his own in our glasses, the dog's water bowl, candles - anything that appeals to him, much to our chagrin.
He does seem to be doing better taking food by mouth. He is willing to put most liquids or solids in his mouth, but doesn't appear quite sure what to do with them then. He doesn't seem to chew or swallow much, so I am looking forward to hearing what the feeding team determines. In the meantime, we rely on his tube feedings for his nutrients because the amount he takes in orally is negligible at this point.
Update, December 2003: Wow! Here we are: nearly 7 months after decannulation!! Although he isn't growing by leaps and bounds (his weight remains an issue), Jack is a vibrant, happy 2 year-old. Except for his trach stoma, which remains open, few people would guess at what his little body has been through. His speech is delayed by just a few months, but the various specialists have determined that he does not require therapy; he will catch up to his peers on his own. Never having been fit for a speaking valve, he was unable to vocalize much until the trach was actually removed. We never got to hear our baby boy babble and coo, but that made his first true giggle at 18 months that much sweeter! We were delighted by the sound; my husband tickled Jack repeatedly just so we could hear it.
Despite the fact that we haven't used it in months, the Mic-key button remains in place until his pediatrician determines that his weight is satisfactory. Although he is only at the second percentile for weight compared to boys his age, we are not concerned. He has a strong appetite, but it is a challenge to get such an active toddler to pack on a couple of extra pounds. An agile climber, we have given up trying to find a baby gate that will confine him. More than once, I have found Jack outside in our fenced in back yard having escaped through the doggie door! Only recently has he sat still long enough to "meet" Elmo, Big Bird, Rolie Polie Olie, and [Mickey] Mouse.
Jack is scheduled to have his stoma closed on January 12th. The thought of returning to the OR and the hospital is heart-wrenching, but it should be for just one night. The surgeon will try to repair the scar so all that remains is a thin line, but no amount of cosmetic surgery will mask the impact that a birth defect - only a few millimeters long - has had on all of our lives. As much as we are looking forward to the birth of our second son in April, we cannot do so without reservation because we now know that things can and do go wrong. Surgery may have been able to repair the cleft, but as I type this with tears streaming down my face, I know that a hole remains in each of us, one that modern technology cannot heal.
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