Halen (2nd Birthday)

We didn't have a clue. In my last months of pregnancy, my physician had difficulty detecting Halen's heartbeat with the Sonicaid. But I was very overweight, and maybe the equipment was faulty. I often joked about how Halen always "hid" his heart. The doctor had to do an ultrasound every time he wanted to check his heartbeat (a little red flag went up in my mind, but I didn't know this doctor well, and I felt I was just being paranoid). On the ultrasounds, Halen was always rolling on his belly, to the annoyance of all involved, so that my obstetrician could never get a clear image of his heart, or his, "boy parts (for confirmation)." I made a mental note at each ultrasound visit to tease him about his shyness when he was older, and for the most part was confident that the pregnancy was progressing normally.

Nonetheless, I remember getting a strange chill around 27 weeks, as my doctor searched the chambers of the heart on the imaging machine. He mumbled something about a heart defect. "You found a heart defect?" I asked anxiously. "No, no, this is checking the chambers of the heart..." He then mumbled something to the effect that an ultrasound wasn't sensitive enough to show a true heart defect, wiped off my belly, and sent me on my way. But, I couldn't shake the feeling that something just wasn't right. The rest of the pregnancy continued normally. But, for some reason my doctor could just never seem to get that darn Sonicaid wand to detect Halen's heartbeat, and so he had to do an ultrasound nearly every visit. I kept thinking he needed to check its batteries or get some new equipment, because he just never seemed concerned.

The weeks before Halen was born, I'd gone into labor several times, unsuccessfully. As he approached his due date of January 30th, my doctor and I began discussing the possibility of induction. Here I must mention that I'd been induced with my first child, Elias ("Eli"), though I'd wanted to have him, "naturally." And, I was in no hurry to repeat the resulting 23 hour labor, and last-minute mass infusion of drugs and the desperate administration of an epidural to move my dilation along. Upon his arrival, Eli had made, "cute," cooing noises. But, my nurse sternly assured me those noises were not cute, they meant he couldn't breathe. He was given some oxygen, then deemed, "fine." But, Eli had feeding, nursing, and failure-to-thrive issues for 6 weeks after his birth that I secretly blamed on the traumatic birth and all the drugs, and my own inability to deliver naturally. With this, our second child, I would not make the same mistakes. Oh sure, I drank more caffeinated drinks than I should have, and couldn't exercise nearly as much as I had with the first. But, this time, I had a fantastic doula, my husband and I had refreshed our Lamaze, and birthing classes, we were ready for anything! Or so we thought.

The birth was quick, and completely natural. When Halen began to make little cooing noises, though I was exhausted, I told my husband, "that means he's having a hard time breathing, but it's okay. Eli did the same thing, at first." The nurse gave me a funny look, but said I was right. I asked if I could hold him. Our birth plan, which was done in triplicate, was very specific on this point. We were to have immediate skin to skin contact. The nurse wouldn't give Halen to me. She said he was her patient, not just my baby, and that she wanted to get him to the nursery right away. I didn't understand the urgency, until, at my insistence, she finally let me hold him. She handed me a pale little blueberry gasping for breath, wrapped in a fuzzy blanket. "Somebody, take him, help him, do what you have to." I said, and immediately handed him back. The nurse whisked him off, and in a matter of minutes, I was left alone, still in the stirrups, confused, hurting, staring at the afterbirth in a bloody, silver metal bowl in front of me. Dad went with the baby, the doula had an appointment, the nurses and doctor had just vanished.

I sat like this for what seemed like an eternity, wondering what was going on, sure it would all be fine. Grandma and Grandpa brought Eli in eventually, but I didn't want him in the room with the birth mess still in full view. Finally, I demanded to go to the nursery, and two nurses, protesting the whole time, put me in a wheel-chair and took me to Halen. Halen's grandparents had been to see him, Eli was peeking at him through the window, Dad was with him. I was very upset that everyone else seemed to be swarming over him, and I was forgotten. I wanted to hold my child, what the hell were all these people thinking, keeping my child from me? And, what the hell was going on?

When I finally got to Halen, he had this weird, clear-plastic looking bucket think on his head, they said was for oxygen. Our pediatrician showed me some x-rays (I now recognize the cloudiness as plural effusions), and said that an echocardiographer (brand-new to the hospital staff) was performing an echo on Halen, and thought he knew what was wrong, but that Halen needed to go to Primary Children's Medical Center—this was all happening the week after Life-flight was grounded for the crash that had happened, so despite the implied urgency, Halen would be transported by ambulance. Meanwhile, a nursery nurse pulled me aside, asked what religion we were, and said that it would be very appropriate to contact our priest at this time.

Still clueless about what was happening, getting increasingly worried, I demanded to try to nurse Halen. He tried to latch right on, but began to sweat and had to stop, he was just too tired. An OB nurse finally made me go back to my room. I tried to reassure myself, much as everyone else was doing, and went back to my room and tried to rest for Halen.  But, the words of that nurse wouldn't leave my head. I was reawakened around 12am, when life-flight arrived. The staff and our pediatrician had explained that there was a fetal heart "by-pass," that functioned in utero, and which was supposed to shut down after birth, but because Halen's heart wasn't working, they were administering drugs to keep it open. They needed to intubate him, so he could breathe. I demanded to go to the nursery, and watch all the procedures being done on Halen. It was brutal.

One of the life-flight nurses wasn't practically familiar with an infant intubation procedure, so another was going to walk her through the process. They inserted the blade down Halen's throat, and he began to bleed. She became nervous, and asked the more experienced nurse to take over. The other nurse took over, and some members of the other team tried to offer suggestions as they worked the blade down Halen's still bleeding throat, under the garish yellow light of the isolette. They were going to put some sort of, "line" in his belly button. They asked if I was sure I wanted to watch. By this time, my resolve was weakening. I abandoned Halen to them to do their work, but ordered them to wake me up before they left the hospital with him.

At five A.M., they wheeled Halen into my room, and up to my bed. There were so many lines in him, and he was so covered in his incubator/transport. I couldn't see him at all. I said good-bye to something in a clear plastic box, and told them we'd be at PCMC in the morning.

I was released at 9 A.M. With Eli in the care of Grandma and Grandpa, my husband, Douglas, and I came home to clean up, and pack a few things for the baby. We still couldn't believe anything awful could be happening to our child. We left the house at noon, and were at Primary's by 2pm. Without much trouble, we found Halen in the fourth floor neonatal intensive care unit (NICU). It was my first real look at him. He had so much hair, and at 9 pounds, 6 ounces, he looked healthy and strapping. All the lines, and the ventilation tube looked ridiculously out of place. We were told not to touch him, that he was having problems with his blood pressure, and any touch would increase his pressure. A doctor came in looking worried, and serious, and escorted my husband and I to a little room.

He drew a silly picture of a box-shaped heart, and tried to explain the subaortic stenosis to us. I remember something about Halen needing surgery, and I remember it was all very serious. It was the first time my husband started to cry. I still didn't really understand it all. I tried to smile, and seem strong, and comfort Doug, and said something stupid about inexperienced fathers. The doctor said he was going to consult with the surgeon, John Hawkins, and that Dr. Hawkins would let us know what was going to happen next.

We went back to Halen, and waited. I rocked in a glider, my arms empty, staring at the big, healthy-looking child before me. At some point, I must have taken a break, and gone downstairs, because my next memory is of seeing Dr. Hawkins, still in his surgical scrubs, sitting on the floor outside the NICU looking worried, and miserable. Doug was on the bench, next to Dr. Hawkins, looking the same. Dr. Hawkins explained that no one at PCMC had ever seen a subaortic stenosis on such a young child, never mind repaired one on a heart so small. He promised to do his absolute best, but that the chances were not good at all. He told us that the surgery would be first thing in the morning. I don't remember how Doug and I spent the time after that.

I know we walked Halen to the Operating Room to wish him good luck, and as the swinging doors closed behind us, with an agonizing moan, Doug broke down in my arms and sobbed. As we entered the hall to the waiting area, we saw Doug's family, and Eli. I pulled myself together, and took Eli into the waiting room as Doug broke down in his mother's arms, and sobbed like a lost, frightened child.

After heart surgery at 2 days old (he had about 13 pumps)

I don't remember anything after that, except seeing Halen again after the surgery, in the Pediatric Intensive Care Unit (PICU). He was a mass of monitors, tubes and wires. And, once again we were warned not to touch him for fear of raising his blood pressure. His charts and bracelets called him, "Baby Boy Valarie." At this, I became angry. "This child has a name, and I want all of his things to have it on them. His name is Halen Alexander, not Baby Boy Valarie!" I stroked his head (against the rules) and talked to him. His eyes, dark black centers, surrounded by blistering red from all the broken capillaries in the whites, opened briefly, and looked in my direction, and he seemed to calm a little. From that moment on, to me, Halen became, "The Amazing Fighterman."

As Halen recovered from his first open-heart surgery in the PICU, we were told there had been an unexpected complication. Halen had a coarctation of the aorta that had not previously been diagnosed, and which would require further surgery as soon as he could withstand the trauma. But, in the next days after his first successful open-heart surgery, our hopes continued to rise, as Halen improved, though it seemed his kidneys weren't fully functioning. Then, on January 24th, with Halen only 8 days old, we received another devastating blow. Halen's kidneys were failing. Dr. Vernon pulled us into the conference room outside PICU and explained that most kids in PICU with kidney failure didn't make it out of PICU. He was going to attempt hemodialysis on Halen, but because of Halen's age and size, it was unlikely our baby would survive the procedure, much less the dialysis and kidney failure. I have never cried that hard before or since.

My husband and his family made plans to have Halen blessed the next day in anticipation of the procedure. I absolutely refused to have my child baptized (we are a mixed faith, Mormon-Episcopalian family) in a hospital. I said he would have the white suit, celebration, and church baptism at St. John's Episcopal Church in Logan, that Eli had had.

In his efforts to hemodialyze Halen, Dr. Vernon performed another miracle, just as Dr. Hawkins had with the surgical repairs. After several frustrating attempts, Dr. Vernon gave one last try and successfully installed the dialysis lines Halen needed. Shortly after, it was found that Halen had started urinating a little on his own, again. And, after getting a chest tube in to drain Halen's left lung of a dangerous effusion, he seemed to be steadily holding his own.

Then, on January 27th we had another terrible scare. Like a nightmare, the assault on this tiny frail body seemed to have no end. I'd spent the night before at a relative's home in Bountiful. I called every few hours to check on Halen, and was told I should try to get to the hospital as soon as I could. Halen had had a very bad night. It was all horrifyingly surreal. When I arrived at the PICU, he was laying in his isolette, devastatingly pale and listless, under the glaring white overhead light. His mean blood pressure was at "39." His dialysis catheter wasn't working, and he wasn't putting out any urine on his own. Ignoring the, "no touching," rule, standing alone before him, I picked up my baby's perfectly formed foot. It flopped like spaghetti.  I let it drop, and fell to the mattress beneath him. In that moment, there was little doubt in my mind that my child was dying. "Like Hell! You're not going anywhere, yet!" I swore, under my breath.  Then, whispering in his ear, "God, please don't leave, yet, Halen!" I rubbed his pale, cold, limp form in my hands. Rubbed his hands, his legs, his feet, wherever I could touch him, around the tubes and wires and sensors. I hugged him, as well as I could, I kissed his hair, his face, his neck. I covered his whole little body in kisses, shaking, stroking, desperate to rouse him. The nurses spent the entire day exhausting every effort to get his dialysis catheter working, until they finally succeeded in replacing it altogether. When evening came, Halen's catheter was working well, his dialysis machine was running and working fairly well, his urine output was good. Most importantly, his blood pressure was up to 49, he was warm, the color had returned to his cheeks, and he was struggling to wiggle despite the heavy dose of paralytic he'd been administered!

I secretly continued to violate the, "no touching," policy, will vehemently making sure every other visitor followed it. He seemed to have gotten used to my touch, and did not react negatively to it. It seemed all I had, as his mother, since I couldn't nurse or hold him (although I continued to pump my breasts regularly in anticipation of the day I could do both!). And, Halen steadily continued to gain stability and strength.

On January 30th, during morning rounds, the doctors told us that it had been decided Halen's coarc repair would be performed he following day, by Dr. Hawkins. Halen, had been getting GI feeds by then, and had even made three bowel movements, one of which I was delighted to have been allowed to change! When I soiled his bed a little, during the diaper change, his nurse allowed me to hold him in my hands long enough to lift him off of the mattress so she could change the blanket under him. I was so nervous, and excited! The following day, Dr. Hawkins repaired a coarctation that was, "as narrow as a pin!" After this successful surgery, we all began to relax and prepare a little in anticipation of a successful recovery, and Halen's trip home.

We soon found out, though, that Halen had developed a chylothorax. And, the colostrom that had been fed to him via NG had caused another effusion in his chest. This meant another chest-tube, and a foul-smelling, and tasting non-fat formula called Portagen. His cath was removed on February 4th, though, and he was extubated soon after, fighting like hell to get home. His first audible cry was the most beautiful music ever heard. In the battle for his life, he was winning. He was ours.

We began to learn the formal terminology and explanations for Halen's condition. He was born with critical subaortic stenosis, and extraneous myocardial tissue, and a coarctation of the aorta. The condition he developed that kept him from nursing, or digesting my pumped breast-milk was chylothorax. The machine that helped him breathe was called a CPAP. He came off all the, "drips," and "meds," and his chest-tubes, and his "O's" stayed fairly stable. Doug and I were eventually allowed to hold him, as were the his grandparents, and uncle and aunt. On February 9th, we left the PICU, accompanied by applause from all of the PICU staff! And finally, on the day before Valentine's Day, with only an NG tube for feeding, we got to bring our Halen Alexander home at last.

Dad holds Halen (coming home picture, Feb. 2003)

Over the next five months, we settled into a routine, if not into normalcy. And, though he developed slowly, as might be expected after his ordeal, and faced many feeding issues, Halen seemed to be doing very well. For Doug, especially this was a healing and bonding period. Throughout this whole ordeal, Doug had been especially struggling with Halen's illness because he had to work, in order to keep the bills paid, the family fed, and the home fires burning. This meant he had even less contact with Halen than I did, and was separated from Eli, and me. He only heard of Halen's progress and decline via phone calls, and emails, and struggled on an emotional rollercoaster in anticipation and anxiety of every new phone call or email. This experience was no less brutal for Halen's father, than for any of us. And, on June 8th, with his entire family and church in attendance, and his father holding him, proudly, Halen was baptized in a little white suit at St. John's Episcopal Church, just as his big brother had been. And, what a beautiful party we had afterward.

Our peaceful routine was to be short lived. June 19th, Thursday morning was spent giving Halen his first taste of bananas, planning for a family bike ride, and Eli's birthday party. But, I had been privately dreading the cardiology follow up appointment at PCMC the next day. I had the most ominous feeling. And, after the echo that day, that feeling was confirmed. "I am just so sorry to have to tell you this," our cardiologist apologized, with obvious anguish, though he retained his professional demeanor. Halen's mitral regurgitation gradient had dramatically increased, and another open-heart surgery was imminent. We were told we'd be called when the surgery was scheduled, and we were just getting onto the I-15 North on-ramp when my cell phone rang. "It's Bonnie (Bonnie Clay, one of the nurse practitioners in cardiothoracics is one of our favorite people in life)...how far from the hospital are you?"

The surgery was scheduled for the following day. We were devastated. It was expected, sort of. But, we'd lulled ourselves into a quiet, hopeful denial for a while.

I brought Halen to the hospital at 7:30am that day. We wandered through the hospital. We found same-day surgery. It was closed. I wandered like a ghost, numb, holding this warm, solid, vibrant bundle in my arms. Halen was curious, but quiet. He looked around the strange hallways, at all the bright colors, and, "talked" a little, and smiled. We asked for directions, and were told to follow the cheery balloon signs to our destination. I held Halen tightly in my arms, forcing myself not to bolt for the car, and home. Turning the corners of the corridor, dutifully following the signs, I couldn't shake the feeling, even among the bright, cheerful characters that this must be the feeling a condemned person feels, walking to their fate. But, we weren't alone. And, he was not condemned. We were walking to his cure and recovery, not his end.

We reached our destination, the recovery unit. Its only occupant was a man wearing scrubs, I assumed he was a doctor. There were 10 beds, 5 on each side of us, all empty. There was the same palpable stillness one feels in a church, or a morgue. I clutched Halen, wrapped in the afghan his grandmother made him, even more tightly. He was confused by my worried look, and I was helpless to explain it to him. "Can you help me?" I asked, pathetically. I felt I was calling to the man through a snow storm of fear, searching for a lantern of hope in his eyes. I was shaking a little, in the warm, temperature-controlled room. He smiled, and I held out Halen's paperwork, and tags, like a foreigner in a strange country, seeking refuge. Somewhere in the back of my mind I heard, "Papers, please!" Just then, a woman in candy pink scrubs materialized from behind a half-wall. "Can I help you?" she asked with a look that said, 'you are definitely in the wrong place!'

"We're supposed to check in for surgery...the signs...the balloons..." I trailed off, holding Halen tightly to my chest. Nausea washed over me, I was desperate to say, "I'm sorry, no. We are in the wrong place, this is all a terrible mistake. We don't belong here. We're going home, now." She led me from desk to desk, trying to help us find out where we needed to be. She kindly promised not to leave us, until we figured out where we should be. Before she left us, Cindy (as I'd learned the-pink-scrub-decked-lady was called) made sure we were comfortably installed in a room in the Rapid Treatment area. Doug found us there, just as the doctor did.

Dr. Hawkins drew us a diagram of the surgery he was going to perform on Halen. He called it a, "modified Konno procedure and resection of the accessory mitral valve tissue," and explained he was going to resect the large wall of muscle that had built up and reblocked the aortic valve (basically, a regrowth of the subaortic stenosis), and also to try to remove any additional tissue from the mitrocardial area possible. The surgeon explained that for the modified Konno, he would remove the thickened wall of his heart between the right and left ventricle, and replace the wall with a Dacron patch. Hopefully, this procedure, if successful, would take care of the stenosis and prevent any further regrowth. Hawkins further explained that this surgery was very high-risk. That phrase said it all.

Doug got to hold Halen for a while, then we headed to the OR. During the whole proceeding, Halen was alert, kicking, fascinated, and smiling at every single nurse (there were many) who stopped to admire his cute face and amazing long, dark curls. Halen became confused when we handed him to the anesthesiologist. Doug cried, I cried, we held each other tightly as the OR doors shut behind us. In the waiting room, I felt a sudden, strange burning in my belly and throat. I ran to the adjoining bathroom, and began dry heaving into the sink, retching for what seemed like forever. Then, the automatic pilot switched on, and once again, it all becomes a blur.

And, once again, he did it. Our amazing fighterman, and his super-hero team of doctor side-kicks. He had made it through the surgery. But, it wasn't over, yet. Once again, the surreal feeling. My legs carried me to the PICU, my hand picked up the phone, my voice said, "It's Halen's mom." As the doors swung open, the last five months dissolved. It was as though they'd never happened. I never held my baby, never took him home, or cradled or nursed him. This was all a dream, or was the last 5 months the dream? Every line, sensor and tube in him, like mythic snakes whose heads, once slain regrow others, were back in their places, mocking us. But, this was different. He was stronger. He'd shown just how strong he could be. This time, we knew he would win.

But, this time was different. Halen didn't have the same calm resolve. He screamed incessantly, he thrashed, he fevered. We were eventually moved to a regular room, and even deemed fit for release. But, something, somehow wasn't right. I didn't want to take him home, but I did on July 4th. That night, he threw up, he had problems breathing, I called to ask what to do, and was told to take him to his regular pediatrician. He didn't sleep that night, neither did Doug or I. On the morning of the 5th, he threw up again, and began retractions, and nasal flares, my heart began to skip. We immediately loaded the family and practically flew to PCMC. I told Bonnie to meet us at the ER, and ran every red light between the capitol and PCMC.

In the ER, we were told he was probably fine, but he had a "really, wet" x-ray. We were told he'd be observed for 48 hours in PICU before being released again, and given more diuretics to drain his effusions, and decrease the pressure on his heart and lungs. After a couple of hours in PICU, it was deemed he was stable enough to be fed.

One hour later, Halen stopped breathing, and went into full cardiac failure. There was a flurry of confusion, as I watched my tiny baby being bagged. I couldn't stand anymore. I left the PICU, to my deep shame and guilt, and called my husband's family. They managed to intubate Halen, as I saw, when I returned, and stabilized him. But, they said, if we hadn't gotten him to PCMC, we would have lost him.

The burn on Halen's foot

Halen in his baptismal gown

The night of the 6th, there was an accident. A nurse accidentally administered a central-concentration of potassium into Halen's peripheral IV line. The result was a rupture that burned from the inside out, through the top of his foot. The hospital took full responsibility for the accident, and began discussing a skin graft (There was no graft performed, but, this accident resulted in an infection that required surgical debridement, and months of care. To their credit, PCMC covered any and every expense related to this injury).

On July 14th, after a full heart-study, it was discovered that there was a hole in Halen's heart that hadn't been repaired in the second open-heart surgery. So, Dr. Hawkins would go in for the third time (making this his fourth heart surgery, including the coarc repair) the following day. On July 15th, the day of his third open-heart surgery, I cannot describe the crazy desperation I felt. Doug, his parents, his aunt, and I sat in the OR waiting room awash in silent, mutual agony.  I prayed from the Book of Common prayer, using a photo of Halen in his baptismal gown as a bookmark. I paced, dry-heaved, I was terrified. Doug was completely silent, equally terrified, completely withdrawn into himself, worried, exhausted, losing his mind in quiet anguish.  After only a few hours, the Dr. Hawkins appeared to tell us that the surgery was completely successful, though they'd had some problems getting him off of by-pass at first. I ran to the meditation room, hit my knees in prayers of thanksgiving, over-whelmed, crazy, relieved, numb. Once again, Halen had fought his way through.

On July 16th, something in me changed forever. No matter how great my fear of losing Halen, the fear became brutally real possibility that day. I arrived at the PICU, ecstatic to see him, floating with happiness, jibbering like an idiot, smiling at everyone, wanting to sing, to dance, to fly. I tried desperately to remind myself that there were other patients, other families who wouldn't be so lucky, that were still in the terrifying place we had been yesterday.

And, then it happened. As, I was calling for entry clearance on the PICU security phone, the conference room door outside the unit swung open, and I froze, knowing, stunned. That room, that room you never, ever wanted to be taken into. A blond nurse, Kim, walked out carrying a tightly wrapped, fuzzy bundle. In the folds of the blanket, I caught a glimpse of a tiny pink bow, amid carefully combed golden curls. Kim's eyes didn't meet mine, and hers were filled with tears that spilled down her cheeks. She kept her back to me as she walked resolutely to the elevator, and pushed the down button.

Halen after his third open heart surgery

While I was at PCMC with Halen, I met a lot of other families, going through their own private hells. I quickly learned not to play the my-child's-sicker-than-your-child-so-I-hurt-worse game. I learned to sympathize with every terrified parent, no matter what their child's status. One mother I met, was desperately struggling with the knowledge that her 8-week-old baby girl, Margie Grace would soon be, "with the angels." I don't remember the child's exact diagnosis, but I know that it was very similar, in fact, less severe than Halen's. I tried to comfort this woman, to tell her to have faith, but really what could I possibly say that would have any relevance to her? But, this child's story struck a chord with me, because she had the same middle name I did ("there but for the grace of God, go I") and because her condition was so similar to Halen's. I would often casually walk by her isolette, only two away from Halen's in the PICU, to try to steal a glance. Because of confidentiality, I could never really approach or touch or talk to her. But, it always seemed to me, that there was never anyone with her, except the nurse, of course. I wondered if I just always missed the family when they visited her, but I spent so much time in the unit, I didn't see how I could have. I've since learned, everyone handles these things differently. At the time, I couldn't understand how they could leave her, how they could give up on her. She wasn't even as sick as Halen had been, surely she'd be just fine!

But, when I saw that bundle in Kim's arms, wrapped with such loving care, carried with such sorrow. I knew that her mother had been right. Margie Grace was now among the angels. The song in my heart disappeared. My steps became lead. I was hit with the reality of her death like a 20 ton boulder. Deep inside I reminded myself, "It wasn't us, it wasn't us, Halen is fine." But, I wondered, why was it her? Why wasn't it us? What miracle intervened for us, and not for her? My God, what that family must be going through. My God, how grateful I am that it wasn't us. I have never ever been the same, somehow, since that moment. And, I have never ever forgotten that child. In some ways, she is with me still, every time I look in Halen's eyes.

At Grandma's House January 2005

Halen fought his way through the four heart surgeries, burns, infections and complications, and was released from PCMC for the last time (for a while) on July 26th. Except for regular follow-ups, echos, and the surgical debridement on his foot, he hasn't been back for surgery since!

We do expect that Halen will have to have an artificial mitral valve installed at some point. But, we continue to hope and pray for his continued health. Since he finally learned to walk at 22 months, and with intensive OT, PT, and TLC from everybody in the family, Halen is a strong, active, lively and entertaining child. He requires enalapril, and Lasix, and lately Qvar, and Albuterol. But, he is the light of our lives, and his big brother's best friend, and biggest annoyance. He has problems with Metatarsus Adductus, and has prescription braces. But, he doesn't require any other support equipment or oxygen.

To look at him, you'd just never guess. He continues to amaze us with his strength, intelligence, clever antics, feisty attitude, and creative ways of getting into trouble. We've already begun to tease him about being so shy with his heart and, "boy parts," in the ultrasounds. Most recently, Halen has been dealing with chronic pneumonia and pleural problems of mysterious origin; Perhaps, the hereditary asthma of my husband's family, perhaps an aspiration. Our first appointment with the pulmonologist is in June.