He Made It!

I was milling around my kitchen, absentmindedly cleaning up and praying for Owen. Little Husband was sleeping on his car seat on the counter in front of me. He looked like an angel. I thought about the parallel lives that Owen and Little Husband lead. I'd no sooner thought "It's as if whatever happens to Owen happens to Little Husband" than an email came in on my Blackberry. It was from Tobacco Brunette. Owen survived the surgery! He survived! I leaned against the counter and wept with joy.

He survived.

And so the clouds lifted

As some of you know, Tobacco Brunette (TB), who is becoming rather dear to me, is in the same predicament I am in terms of having a young son diagnosed with ToF. I've been religiously following TB's blog as it gives me a possible glimpse into what the future may hold for Little Husband. TB and I also correspond via email several times per week and, among other things, we share the results of our baby's doctor's visits. Until yesterday, everything was going well for both of us. Then TB's son had a "tet spell" and everything changed.

TB's son is slated for surgery within the next few weeks. Please, please say a prayer for her sweet, little baby boy Owen. As common as the surgery is, no one can ever predict what the outcome will be, and that's what strikes the most fear in her (and my) heart. The thought that we may never see our little men smile and coo and sleep and breathe those sweet baby breaths is often too much to bear. I handle it by keeping those thoughts to myself or pushing them away. But still, they live with me every day--make no mistake about that. When I comfort Little Husband in the early morning hours with the only illumination being the moon, I'm am wondering if our nights together are numbered. This is the greatest fear I have ever known: losing someone I love as much as I love my little baby. That shouldn't be discounted.

After reading about TB's experience yesterday with Owen and his tet spell, I had a minor breakdown. Fortunately, Husband is the calm one so he comforted me back to sanity. Owen wasn't supposed to get sick, you see. Owen's test results are great--near perfect. Just Like Little Husband's. Owen shows no signs of turning blue, just like Little Husband. Owen was simply supposed to have surgery with no outward signs of having a congenital heart defect.

At least, that's what I told myself. Owen's hospitalization smacked some sense into me.

Today I took action! I learned all about what to do during a tet spell (net result: call 911! No ER heroics for me, I'll leave that to the experts). Husband and I signed up for a CPR course. We happened to have an appointment with the pediatric cardiologist and we peppered him with all sorts of questions. Even though Little Husbands blood-oxygen levels were at 100% (100%!), I outright told the cardiologist that I no longer trust those numbers based on what happened to TB.

Side bar: our cardiologist was blown away that I have a friend whose son is only three weeks older than LH and has the same diagnosis. As a result, he took my fears seriously and never once tried to down play my concerns due to the fact that Little Husband's test results are looking so good.

Unfortunately, today's echo cardiogram revealed that Little Husband has a muscle in his heart that is thickening. One month ago it wasn't so bad, in fact, last month the cardiologist thought we might get lucky and never see a tet spell. Today he had to retract that statement.

The mood around our house this afternoon has been rather somber. I've been piddling around, doing housework and watching Little Husband sleep. Husband had to go back to the office. Both of us got online and performed a little research on surgeons and pediatric heart hospitals. What we found is very encouraging. In fact, inasmuch as one can be excited about open heart surgery, I feel that we are in a very fortunate place. The hospital that our cardiologist recommends, Texas Children's Hospital, has been listed as one of the best in US News and World Report. The surgeon that our cardiologist promised to put us in contact with happens to be the one featured in the article.

For the longest time I was having trouble conjuring up images of Little Husband post surgery. I tried so hard to imagine him taking his first steps or getting on the bus to kindergarten but my brain simply would not produce the images. I began to fear (greatly) that this meant that these things were never going to happen. Today, after this simple set of coincidences, I have a little hope and I'm clinging to it.

Milk Monster and Me

At noon today Husband and I took The Milk Monster (TMM) to the Alamo Drafthouse to watch a movie. TMM did not care about the movie (Marley and Me) opting instead to sleep the entire time. Husband and I enjoyed a wonderful lunch and a hilarous movie. Well, I thought it was hilarious although I seemed to be the only one laughing: I was that moron in the back row laughing loud. Of course, I cried a river during the sad parts--how could I not with all these post natal hormones surging through my body? Side bar: what exactly does "natal" mean? I'm familiar with the state of being pre-natal and post-natal but I don't ever remember being natal. Anyway, I want to thank The Drafthouse for introducing "Baby Day" during Tuesday and Friday matinee shows. I can now take the baby to the movies without judgment. I can also eat a fabulous meal while I watch the movie. I will not have to join the ranks of new parents who proudly (or sadly) declare that they haven't seen a movie or read a book since their baby was born (I read when I nurse, eat, take a bath, blow-dry my hair and any other opportunity I can find to do so).

Anyway, in honor of this momentous event, I dressed Little Husband like Husband (hey--it's better than dressing him like Little Lord Fauntleroy).

After the movie we went to an outdoor coffee shop near our house.



Much like his daddy, Little Husband has important work to do, even while at home. Unlike Daddy, Little Husband does not tolerate interruptions. Here he is with his new laptop. Did you need something?



Little Husband is a big believer in a work/life balance:




Life's not all about work and play. One must exercise as well. Little Husband enjoys a good walk from time-to-time:

Milk Monster Montage

As usual, clamoring to be nursed.



I don't know what he did, exactly, but he looks guilty.



Please note that my thighs are as wide as his shoulders. Yes, it's an optical illusion but let's give a recently pregnant woman a break, shall we?



He's beautiful. Just like his daddy.

The New Year

2008 was an incredible year for me and Husband. I was laid off from a job that I didn't know I hated until I was laid off. I got pregnant soon thereafter. Husband and I traveled extensively. And we welcomed Little Husband into this world.

Makes me almost scared for what's to come in 2009. How will it ever compare?

Tonight was one of the best New Year's Eves I've ever had. It was refreshingly simple: we went over to a friend's house for a dinner party. They were cool enough to let us bring the baby. It was a night filled with great stories, a lot of laughter and much relaxation.

I met some very inspiring people tonight. I met a woman who manages a home where children with terminal cancer go to live out their last days. I met a man who develops unique propeties all over Austin. The host is an entrepreneur whose product is designed to help advance the Hispanic community. Husband just got promoted at work.

And I? I can't think of one single significant contribution I've made in my life, except this:



Time to change that. As a rule, I don't make New Year's resolutions but I'll make an exception this time. My resolution is to spend the next year figuring out how I'm going to put my stamp on this world.

They Embarrass Us, We Embarrass Them

In an email from Little Sister where she's talking about the Christmas gift she gave to nephew:

"I'm the boring aunt because I'm only giving books. Nephew looked at the book I gave him and said "I didn't want this!" When Older Brother said he might be hurting my feelings, Nephew looked at me, covered his face and said in a rather robotic tone "I-love-it.""

I wish I could do that sometimes.

In other news, any mother knows that the "Baby Industry" has grown almost as bad as the bridal industry. For this, we pay ridiculous amounts of money for things like diaper bags, onesies with cute slogans and any gadget that will make our lives easier. This sling is no exception and I am almost ashamed at how much these few scraps of fabric cost. Regardless, it makes my life soooo much easier when Little Husband (aka - The Milk Monster) has one of those days when he wants to be held and cuddled 24/7. I rationalize the purchase by mentally listing all the things I am able to accomplish once I stick his little body in this thing. Also, hauling around 8.5 extra pounds up and down the stairs doesn't hurt when it comes to shedding that pregnancy weight.



Here's a closeup of him hiding his eyes. I have no idea why he feels compelled to do so. Perhaps I'm embarrassing him. Reminds me of how, when I was a pre-teen, I would skulk around K-mart, hiding behind the racks because my mother forced me to go there and I didn't want anyone I knew to see me.

I'll Let Go When You're Okay

Rejoice

"You can do it, Sweetheart. Just one more series of pushing and he'll be here."

My baby doctor encouraged me from his position down there. Melek alternated between stroking ice on my forehead and curling up my shoulders as she assisted me in pushing. I, thanks to my BFF Epidural, felt nothing. I could barely tell where the baby was positioned in my pelvis. Still, I gamely pushed with all my might.

The "push series", as I call them, consisted of pushing as hard as I could for the count of ten, taking a quick break to inhale deeply, then repeating the process for two more sets. I had been in labor for almost thirteen hours and was pushing for three of those hours, but still I had plenty of energy. It turns out that after the epidural is administered you can basically sleep through the rest of your labor. Under the advice of our birthing class instructor, I slept as much as possible in order to store up my energy for when it was time to deliver. This strategy paid off tenfold.

Where was Husband, you might ask? He was out in the waiting room, eagerly awaiting the news of his son's arrival. Don't judge me, my friends. I'm just old-fashioned that way.

Although the push-series consisted of three sets, it took a fourth set to deliver Little Husband. By then the doctor had the vacuum in hand because Little Husband's head was turned to the side, firmly lodged in my pelvis. Everyone in the delivery room was crowded around, shouting out words of encouragement. There must have been seven or eight people cheering me on. It was a wonderful, positive environment. Can you imagine coming into the world with people cheering and clapping and celebrating your arrival? I cannot help but think that this will have a life-long impact on Little Husband. I will never forget the joy in that room.

Throughout my pregnancy I read many accounts of parents who did not bond with their newborn immediately after the birth. In some instances it took several weeks for the bonding process to occur. This was not the case with Little Husband. As soon as he was out and the doctor held him up, I fell in love. How could I not? With a head full of wavy dark hair, he looked just like Husband, and I love Husband with everything I've got. Then the baby cried his plaintive, little kitty-cat cry and my heart broke. This little being was mine and Husband's to nourish and nurture and protect and we weren't going to let him down. Not ever.

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Bewilderment

"And here is your room!" the twenty-something nurse chirped as she wheeled me into my post-delivery "sanctuary". If I weren't being wheeled in a wheelchair, I would have stopped dead in my tracks. While my previous Labor and Delivery room could have been likened to a presidential suite, the post labor/delivery room was more akin to the maid's quarters. A solitary, dismal, fluorescent light illuminated the tiny room. There was just enough room for a bed and chair. Someone had optimistically placed a folded up cot in the corner, but I couldn't imagine there'd be room for it. After settling into the bed, I pointed at the cot: "How on earth are we going to be able to extend that for you to spend the night?" I asked Husband. "Don't you worry about it," he replied, "I will figure it out."

We chatted happily while we waited for our baby to be brought to us. After the birth the hospital personnel took him to the nursery to clean him up and check his vitals. Three hours went by and still no sign on Little Husband. "I'm going to find out what's going on." stated Husband, and he marched off, my knight in shining armor. I laid on my bed trying hard to recover and not give way to needless worry. Still, I sensed that something was wrong. Terribly wrong.

Husband returned after twenty minutes (or so) with a grim look on his face. "They found a heart murmur when they were checking his vitals," Husband reported, "They need to administer some more tests."

The rest is too painful for me to write about at this time. I never, ever want to relive this day, the day after Little Husband's birth. It was the worst day of my life falling on the heels of the best day of my life.

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Despair

The next day found us in the hospital nursery, witnessing Little Husband's Echocardiogram. Three technicians were crowded around a monitor as the lead tech traced a wand over Little Husband's bare chest. Clad only in a diaper, Little Husband wailed his tiny little kitten wail. Distraught at hearing my baby cry and not being able to comfort him, tears rolled down my cheeks. I kept my silence.

Thirty minutes into the test, the pediatric cardiologist joined the group of technicians. I watched him closely. Did I like this man? Did I trust him? I studied his body language in an attempt to determine that which I couldn't tell from the image on the monitor. What did the doctor see when he looked at the screen?

Finally the technicians dispersed and the cardiologist turned our way. "If he sits down, it's bad news." I told myself. I am constantly evaluating people this way. The doctor pulled up a chair. My stomach dropped.

"Your son has a heart condition known as Tetralogy of Fallot", the doctor told us. My heart broke as I listened to the doctor outline the basics of this heart condition. Little Husband would need surgery. Open heart surgery. I felt like I was going to faint.

"And if we do nothing?" I asked the doctor.

The doctor looked me right in the eye. "Then he will die."

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Distraught

After clearing my hospital room of visitors, Husband and I were finally alone that night. After the Echocardiogram, Husband had to leave to tend to some things at home. By the time he returned, it was dusk. We weren't truly alone until that evening. We held each other and I cried as we processed the situation.

Our baby was wheeled in by the hospital personnel. "Time for Little Husband to eat!" chirped the nurse. I pulled him to my breast as Husband and I continued to talk. Husband looked distraught. "Here," I told him, "Unbutton your shirt."

"What?" Husband looked confused.

"Unbutton your shirt."

He did as I asked. I took off Little Husband's undershirt and placed his bare skin against Husband's chest. I covered them in a blanket. "This will heal you," I told Husband.

Husband wrapped his strong arms around our baby and melted into him. He held his son this way for three hours.

"You were right," he told me as he finally handed back Little Husband. Still, I saw an emptiness behind his eyes that I knew I couldn't fix.

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Compassion

The next morning I woke up at 6:30 as the nurse wheeled Little Husband back into my room. I tried to sleep with him in my room, but his grunts and squeaks kept me up all night. At 4:30 am I rang for the nurse to take him to the nursery so that I could catch a nap. They brought him back at 6:30 am for his feeding.

In the early morning dawn, alone with my fears and dark imaginings, I cradled Little Husband close and wept. I can't ever recall feeling so alone and distraught in my whole life. The day nurse walked in, saw me weeping, and stopped in her tracks. Then she did something so human, it will remain with me for the rest of my life. She sat down on my bed, wrapped her arms around me and Little Husband, and she silently held us both.

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Hope

Husband returned a few hours later, showered and refreshed. We'd agreed after the first night that he would sleep at home rather than spend the night in my hospital room. The "visitor cot" was no better than a cheap army cot and extremely uncomfortable. Fortunately, we live just down the road from the hospital.

My sadness was contagious and it immediately overtook Husband. He sat down next to me as I recounted my experience with the kindly nurse. We held hands and relayed our fears as we gazed at Little Husband.

Just then, my cousin, a retired pediatrician, breezed into the room (uninvited) and sat down opposite us. He appeared happy and his happiness was so uplifting, it was as if someone swept away the clouds. I looked at him warily, but already I was feeling better.

"You know, I'm not worried so neither should you be," he stated by way of a greeting.

Husband and I just looked at him, but we sat up a little straighter.

He continued by telling us all about Little Husband's heart condition in terms we could understand. He told us how common it is. He told us about the tremendous success rate of the surgery.

In short, he told us that everything would be okay, and that's exactly what we needed to hear.

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Helplessness

"I'm going down to the nursery to visit Little Husband." I told Husband as I slipped on my slippers.

Husband lifted his head slightly from his position in the recliner and opened one eye. "Okay--I'm just going to stay here," he said as he fell back to sleep.

Still in pain from giving birth, I slowly made my way down the drab hospital corridor to the nursery. I never knew why people hated hospitals until now. They reek of dreariness and despair.

Little Husband was relegated to the nursery for the remainder of our time in the hospital because he had high bilirubin levels (related to jaundice) and had to spend some time in phototherapy. It was 1 am.

I entered the nursery and once again my heart broke. Little Husband, clad only in a diaper, laid on a bare, Plexiglass table under the Bili lights. His little body was tensed in the fetal position and he wore a giant mask to protect his eyes. He looked tiny, helpless, and alone. I could only imagine his distress.

"Can I touch him, comfort him?" I asked the twenty-something night nurse. She cast a disinterested look in my direction and shrugged.

I walked over to Little Husband and stroked his hand. He clasped his tiny fingers around mine and held tight. I stroked his head, bare chest, tiny legs and feet. I whispered to soothe him and studied him for the first time. He has husband's toes. My hands. Long, long legs. A cute, little bow mouth. Slowly, his little body relaxed under my touch. It was as if he knew me.

Crying (silently, of course), I stayed with him for a very, very long time. I stayed with him until I was in so much pain that I could not longer stand.




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Bonding

The next morning I woke early and with a lump in my throat. My OB/Gyn had come to visit and was concerned about my blood pressure which had sky-rocketed. As we talked, the day nurse brought a tightly swaddled Little Husband in for his feeding. I sat up and eagerly accepted my package while still talking to the doctor. Finally, I looked down at Little Husband: fitted comfortably in my arms, he gazed up at me with the sweetest, most loving expression imaginable. He knew me.

It was shortly after this that I snapped the "Burrito Baby" picture which is why it's so special to me.



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Relief

Our first post-hospital visit to the pediatric cardiologist had both me and Husband very tense. I especially felt sorry for Husband as he was bearing the brunt of trying to take care of a very sick baby and a very sad wife. He had the weight of the world on his shoulders but he handled it with strength and grace.

At the doctor's office, Little Husband went through another battery of tests. After what seemed like a lifetime the cardiologist sat down to level with us. "Your son has a mild case of the disease," the doctor told us. "He should do just fine with the surgery."

For the first time since Little Husband's diagnosis, I exhaled. He was going to be okay!

As he stood up to leave, the doctor turned back to us. "In ten years this will all be just a bad memory," He told us.

I was so grateful that I wanted to dash over and hug him but I didn't trust my legs to support me.

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Joy

It's been three weeks since we brought Little Husband home, and each day with him brings about new joy for me and Husband. At this age he's not doing much, but we manage to find our entertainment in the little things. For instance, somehow Little Husband's tiny gastrointestinal tract has the ability to conjure up some mighty explosive "toots". Often just before he does so he will raise his arms in the "ejection seat pose" (aptly dubbed by Husband who used to be a pilot), toot (loudly) then emit a shriek as if the noise surprised him. Unwittingly, he's already quite the little ham.

This is him clamoring for more breast milk:



My mother came to stay for three weeks and was a source of immeasurable comfort to me. When I recounted to her how I was receiving criticism for responding immediately to Little Husband's cries, my mother listened patiently and then offered her opinion. "Sweetheart--your situation is different and some people don't understand that. You just disregard their advice and do whatever you need to in order to comfort the baby."

This is good advice, you see, because as morbid as it sounds, there are no guarantees with Little Husband. For this reason, I intend to cherish every day with him as if I may not get another. We will try to anticipate every need before he lets it be known; "cry it out" holds no place in our vocabularies. We will sleep with him in our room and we will thank God for the sleepless nights that we get to spend with him cradled tightly in our arms. When the surgery is done and he is deemed okay, then--and only then--will we let go.