Happenings

Recently some things have been going on with Little Husband's health that I've found rather difficult to share openly. I realized today that I tend to not share things of this nature because I want to shield my friends and family from worry and grief. I guess my thought process is that if I keep it to myself, no one else will have to hurt like I do. I don't do this conscientiously, believe me. I never even knew that I did this until I married Husband two years ago and caught myself doing it with him. If something was wrong and there was a chance that it would turn out okay (and there was nothing he could do to influence the outcome), I wouldn't tell Husband about it. That way, he wouldn't have to worry. I never want anyone to worry.

By now most of my friends and family know that Little Husband had a disappointing check-up several weeks ago with his cardiologist. It was the first appointment we had back in Austin after the surgery. During surgery they decided to spare the pulmonary valve because it was just a tiny bit undersized (normally they remove this valve as part of the corrective surgery). Had they removed the valve, it would guarantee that Little H would need another open heart surgery later in life (teens to early twenties) to replace it. If they spared it, there's a chance that it could fail to work as it should and cause other problems. Either way, Little Husband will always have a heart murmur because his valve is shaped differently than a normal one. Unfortunately, during that first visit we learned that his murmur was loud--on a scale of 1-5 it was a 5.

It was so loud that when I took him for his 4-month check-up, the pediatrician, after holding his stethoscope up to Little Husband's chest, reared back quickly and looked at me as if to say, "Do you know about this?!?"

Anyway, back to the cardiologist. He outlined our options and told us that there was a very real possibility that medical intervention would be necessary for Little Husband. This could be as simple as inserting a catheter through a vein in his thigh and expanding a balloon up in the valve or, if this failed, it could mean another open heart surgery. I was sick about it. I couldn't bear the thought of my little baby going through another surgery.

Weeks have gone by and each visit to the cardiologist shows the murmur decreasing. Two days ago it measured out at 3.8. I am almost afraid to hope that things might be okay, for I fear having the rug ripped out from under me again (referring to the day that LH was born although that was more like the whole foundation than a mere rug). The cardiologist feels comfortable enough with the current state of the murmur that he told us to wait one full month before coming back to see him. Unfortunately, we were back in his office just this morning.

Here's what happened: This morning while Husband worked from home, a very cool, Texas-sized thunderstorm rolled in. Our little family snuggled together while we watched the show outside. The mood was cozy and safe and joyful as we made plans to go for a run (after the storm) and to take Little Husband out for his first boat ride this evening. I took Little Husband upstairs to change him out of his PJ's and what I saw on his chest made me gasp: it was the beginnings of an infection at the very top of his surgical incision and it looked like it was spreading. I am terrified of an infection, you see, because if it reaches his heart, he could die. I think I fear infection more than any other complication that may arise from Little Husband's surgery.

Momentarily paralyzed, I called out for Husband but he was using his electric razor and couldn't hear me. Recovering my senses, I raced into our bedroom with Little Husband and laid him down on our bed. Husband joined me as we inspected the wound. I was in a panic but I toned it down for Husband---I didn't want him to worry as well. Forty-five minutes later I was at the cardiologist's office and, because Little Husband was not running a fever or showing any outward signs of being in distress, the doctor suspects that what we're seeing is a surgical suture working it's way out of Little Husband's body.

Oh Dear God in Heaven I pray that's all it is.

Still, I'm going to watch that baby like a hawk. As long as he's his usual smiling, happy baby self I'll know we're okay. My job will be to make sure that he's laughing.

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We went to a nice gala last night as guests of Husband's parents. We were so excited to go since we missed the American Heart Association gala due to Little Husband's surgery. I really wanted to wear my kickin' ball gown, you see, but that wasn't in the cards for last night. It wasn't that sort of gala so instead I settled on a black cocktail dress (I'm so original).

The dinner was wonderful (I ate like a trucker) and the entertainment was fabulous. I'm not particularly well cultured so take this with a grain of salt but the pianist was the best I've ever heard. After the concert we went out on the terrace for champagne and cupcakes. The cupcakes were small--about the size of a golf ball--so Husband decided to grab another as I waited a few feet away. It was then that two men swooped in and hijacked our evening. Now, I'm always up for talking to new people, but these guys were something else. They went on and on and on about their glamorous lives and all the famous people they knew. "Blah blah blah and then Fergie (Duchess of York) told me that she liked my tie...blah blah blah and I told Pavarotti that we ought to go hunting some day and blah blah blah..." Husband and I were dying. We tried to ditch them by going to the bar for a glass of champagne but they followed us. After forty-five minutes in their company, we left. I was so disappointed because these days it's a rarity for Husband and me to get any time to ourselves and thanks to these guys we lost what precious little time we had. I wish I knew a polite way to "lose" someone in a setting like this, but I haven't mastered it yet.

Prior to that, at dinner, I was seated next to a doctor who practices in the Austin area. We began discussing the medical school in Dallas and I told him all about Little Husband's surgery. It turns out this man is well-connected in the pediatric cardiology field and he shared my misgivings about the Houston hospital (I still need to write a post about what happened in Houston and why we decided to transport LH to Dallas for surgery). As we talked he told me about a heart related charity in Austin that I would be well-suited for. I can't elaborate in this blog for anonymity reasons, but I do believe that I've found my purpose. In short, I would be an advocate for babies and children who need open heart surgery but cannot afford it. I would be their voice and I would fight their battles. I believe I have found my calling.

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On a final note, I've been forever meaning to write about an incident that happened a few days into our hospital stay in Houston. Husband and I were switching off who stayed in the hospital with Little Husband and who slept at the hotel. It was my night to stay with Little Husband and I was exhausted so, when he woke at 3 am for a feeding, I pulled him into bed with me to nurse. Naturally we both fell asleep but the beauty of nursing in bed is that the baby has access to food any time he wants it. Several hours later I woke up to find Little Husband happily nursing away while eight doctors and residents stood around us and watched the show. The worst part is that they pretended like nothing was happening and began conversing with me as if my boob (which is bigger than Little Husband's head) (sorry Dad) wasn't hanging out in all its glory.

Good times.

It's Tummy Time!

Today, Little Husband was cleared by the cardiologist to get started again on Tummy Time. Here's how Tummy Time goes in our house: I place Little Husband on the floor and he lays there with his face mashed into the floor, pathetically crying and gnawing on the carpet as if the wool fibers are the only only meal he's had all day. At no point does he make an attempt to lift his head or do the proverbial "push-up" which, to my understanding, is the whole point of Tummy Time. Then, if that doesn't garner any sympathy, he'll start crying, then screaming like he's being branded with a red-hot cattle prod.

In essence, Little Husband found a way to render Tummy Time completely ineffective.

Out of desperation (why does it seem like everything I seem to do these days is prompted by desperation?) I did some research and found an inventive way to get Little Husband to cooperate during Tummy Time.

Old Tummy Time:



New Tummy Time:



He loved it and spent a whopping ten minutes on that ball, lifting his head, doing push-ups and just generally allowing me to roll him all around. I'm sure he'll catch onto me and renew the protest, but I've got a plan: once the novelty wears off I'll just pour a few drops of Sweetease on the ball and let him lick away!

Shhhhh...

Guess who's on his 8th straight hour of sleep?

Guess who popped awake after six straight hours of sleep and now, at 4 am, cannot go back to sleep? Don't feel sorry for me, this is the longest stretch of sleep that I've had in ages. I feel like I could go run a marathon or something!

The irony is, over the past few weeks I've tried every trick under the sun to get Little Husband to sleep longer than 3 or 4 hours. Last night I tried nothing; my bag of tricks was empty. I simply stuck LH in bed and that was it. No schedules, no Ferber, no rice cereal, no nothing. I am particularly grateful that he's sleeping so long because Husband is out of town and I was dreading handling all the night wakings myself.

Guess who just woke up? He must have sensed that I was about to start getting productive.

"T" Stands for "Tough"!

You haven't heard from me lately because I can only blog while Little Husband is asleep. At night when he goes to bed it's a race against the clock for me to get myself into bed since I know that I'll be unceremoniously wakened in five hours. Then I'll be wakened again two hours after that and again 45 minutes later, and so on until 5 am strikes or I beg Husband to go deal with him (whichever comes first). Little H used to only wake once each night but that's changed since his open heart surgery, and I don't know how to deal with it. Therefore, while Little H is sleeping I'm reading books on how to get him to go to sleep and stay asleep. Makes sense, no?

Here's a picture of Little Husband dancing on his "T" rug the week after we returned home from the hospital. You can't see his chest scar because I took the picture with my phone, but believe me it's there. It's about five inches long and looks like someone scraped down the front of his chest with a ragged fingernail. Little Husband is oblivious to its existence, that's why we call him Tough.




I thought that Older Sister's perspective on this picture was particularly insightful:

"He really is strong evidence that people can make a choice to be happy."

Well said, Older Sister. Here's to my happy little baby. Now if I could only figure out how to get him to be that happy at four in the morning...

Mom Car

Today I went from this:



To this:



I am grieving.

I told Husband that the minute Little Husband can safely sit in the front passenger seat, Husband had better have another manual transmission convertible on order. Doesn't have to be new or expensive, just has to have a top that comes down.

Otherwise, I'm going to go from this:



To this:

Because Open Heart Surgery at Three Months of Age Isn't Enough...

Here's why it's noon and I'm not even dressed yet:



No, he's not crying because I put that ridiculous wizard hat on him. He's crying because he's cutting his first tooth! He's been gnawing on his hand non-stop, poor little guy. In one of my many "mother-of-the-year" moments, I swaddled him the other night only to realize, when he woke up screaming a few hours later, that Little Husband's hands were trapped and he was unable to gnaw on his hand to soothe his aching gums.

The worst part is that at times I can't tell if he's crying because his gums hurt or because his chest hurts. MY question is, why haven't we, as a human race, evolved out of this sort of hell? Why can't babies just be born with teeth or, better yet, no pain receptors in their gums?

I've looked into the various remedies for teething and they are effectively useless for a three month-old. Little Husband cannot yet hold a teething ring let alone bring it up to his mouth. Different sources warn against topical analgesics due to their side effects. I've had two people mention some tablets that the baby can chew on--I need to look into these. Does anybody else have any ideas or input?

If baby doesn't sleep, mamma doesn't sleep, and when mamma doesn't sleep, nobody's happy...