Thursday, February 26, 2009


We turned left onto our street after a 4-hour drive home from Dallas. It was 4 pm and Little Husband slept most of the trip, so Husband and I knew we were in for a challenge this evening. As we rounded the corner, I noticed an SUV parked in our driveway and I immediately bristled at the thought of having to entertain someone after returning home from a 15-day trip. Then I realized that the car belonged to my mother-in-law and my irritation faded.

We walked into our house as she was putting fresh-cut flowers on the table. A nice bottle of wine accompanied by our best crystal sat waiting for us. A freshly cooked dinner was in the refrigerator as well as fruit, vegetables, cheese and roasted peanuts. She had thought of everything.

There, attached to a dining room chair, was a helium balloon. It was a basketball. Little Husband will never be able to play football or rugby, but basketball should be just fine.

Husband and I thanked her profusely as we looked forward to a wonderful meal. Then the meltdown started.

The nurses warned us that Little Husband might have a hard time transitioning home, and I saw that they were right. We swaddled him and cradled him and changed his diaper multiple times but he was never calm for longer than 15 minutes. I nursed him hourly but he'd only eat for 10 minutes or so (he usually eats for 30). After a few hours of this I decided to try to feed him one more time, so I asked Husband to prepare a bottle for him.

"Do you want to feed him breast milk or formula?" Husband asked me. His eyes were slightly wild and reflected the stress of driving almost 200 miles and then having to deal with a fussy baby.

"Just fix the formula. All the breast milk is frozen so formula will be faster. I just need a bottle quick," I instructed him. "The formula can be found in the---"

"I've got it," Husband interrupted, "I've got it right here."

I looked up wondering how Husband would know that I'd stuck the formula in the pantry. Husband was looking down at a bottle he was assembling as he proudly waved the "formula" in the air.

It was the can of peanuts.

We're tired. We're so tired.

Home, Home, We're Going Home!

Finally! 15 days after it all started, we're headed home! We had one last checkup with the Dallas cardiologist today and they sent us out the door with a "fare thee well".

The nightmare is truly over.

Sunday, February 22, 2009

Motherly Guilt

I was just reading a blog where a mother was asking a question in relation to motherly guilt and I decided I could expand on the topic in today's post.

Children's Hospitals, no matter how many trains are running through the lobby or how brightly painted the hallways are, can be places of intense loneliness. "You would be amazed," my favorite nurse told me, "at how many people drop their sick children off at the hospital and never visit them."

How on earth can a mother worth her salt do that to her child? If I so much as leave the room for one second to go ask the nurse something, Little Husband senses my absence, bolts awake and starts screaming as if he's going through another open heart surgery minus the anesthesia. (Yes, my kid is spoiled but we'll fix that later.)

I first witnessed this phenomenon in the ICU in Houston. They ran out of rooms so LH was put in a room with a tiny baby whom I suspect has Down’s syndrome. He was asleep most of the time--I almost never saw him move or open his eyes. He had tubes taped all over his body and wires that led to multiple monitors that were constantly alarming. I noticed, after several hours, that no one ever came to visit him. Clearly he had loved ones as his crib was adorned with toys and balloons, but for the duration of our stay in that room (7 + hours), he was on his own. This was especially heartbreaking when I noticed a movement in his crib and looked over to see that he was crying – silently because he had a tube going down his throat – with all his might. His tiny little fists flailed in the air and his head shook from side to side, but no one was there to calm him and I couldn’t do so because the nurses would have killed me. I did the only thing I could think to do: I sang a lullaby which I directed at Little Husband but was meant for him. I’ll never forget that sweet little baby crying for a mother who wasn’t there to comfort him.

After we moved over to the Dallas hospital I shared that story with my favorite nurse. A shadow passed behind her eyes as she commented, “You wouldn’t believe the parents who drop their kids off here and never visit them. It’s heartbreaking and it happens all the time. We have volunteers who come in and visit the kids, but it isn’t enough as they don’t work the weekends. These poor kids go without a visitor the entire weekend. The nurses try to keep them company but we still have to do our jobs and sometimes the parents complain when we bring the kids out to the nurses’ station and play with them.”

“I don’t suppose I could go into their rooms and just talk and hang out with them for a bit…” I began. She shook her head sadly, “No, I’m afraid that’s against hospital policy and privacy restrictions.”

I vowed right then and there to volunteer at our local children’s hospital once Little Husband was enrolled in preschool.

A few nights later I was chatting up the ICU nurse and the topic of parents who don’t visit their children came up once again. The nurse told me, with tears welling in her eyes, how a little, tiny baby girl had been taken off life support just the day before. Not one single family member or friend cared enough to show up at the hospital and say goodbye to her. This poor little baby had to make the transition into her next life with just the hospital personnel by her side.

Yesterday, my favorite nurse and I were chatting again and I told her what happened in the ICU with the baby girl. Again a shadow passed behind her kind eyes and she told me this story:

Favorite Nurse had a patient who had been in and out of the hospital throughout his teen years because he was morbidly obese and his heart just couldn’t handle the strain (he was approximately 400 lbs). In fact, his mother passed away a few years prior from the same sort of thing. This boy desperately needed a heart transplant but he wasn’t a viable candidate for one due to his weight. The hospital tried over the years to control his diet but every time he was discharged and went back home, he’d revert to his old habits and regain all the weight. When he was 17 his heart was in such bad shape that he was admitted to the ICU. No one visited him, not even his father. The hospital called Favorite Nurse at home and asked her to come in and stand by his bedside, but by the time she got there he had passed away (she missed him by minutes). This poor boy was all alone with no one there to say goodbye to him and tell him that he would be missed. I cannot begin to imagine how unloved he must have felt.

This morning we had to take Little Husband down to radiology for an x-ray. In the waiting area there was a man with his four year-old son. The little boy was engrossed in the cartoon as his dad and Favorite Nurse conversed. It turns out that this little guy was on his second heart transplant. It turns out that his first transplanted heart was found to be “as hard as a walnut” when they performed the second transplant surgery. The doctors commented that this little boy should have died. The father laughed and said, “It was amazing—we had no idea that anything was even wrong with him! He was still running all over the place and full of energy up until it was time for the new transplant!”

After he left, I turned to Favorite Nurse and said, “I wouldn’t last a day working here.” Then I let the tears fall.

“I know,” she said, “It’s tough. But then you see parents like that and it makes it all worthwhile. That little boy survived on a bad heart because he has such strong, loving, devoted parents. Their strength makes him strong.”

Then she looked directly at me, “And that’s how I know that Little Husband is going to do just fine.”

This changed my perspective on motherhood. For instance, tonight my little family of three hung out in our hospital room joking and laughing and loving on one another. “We’re probably spoiling Little Husband by letting him sleep on us all the time,” I informed Husband. “I’m not worried about it,” he responded, “we can worry about all that after he’s healed. For now, I’m holding him whenever he needs me to.” I agree.

There are so many sources out there (books, friends, doctors, family) who make you feel guilty—like you’re spoiling your child—by giving them too much love and attention. I’ve decided that there’s no such thing. From what I’ve seen, when you are doing everything you can to love on and protect and comfort your baby, you’re doing just fine. In fact, you’re perfect.

Saturday, February 21, 2009

Little Mama Has Gone Crazy!

I haven't had a chance to continue the saga about what happened to us in Houston and why we moved Little H to the hospital in Dallas, but I will over the next few days. Suffice to say, once you read it you'll see why all of this stress has rendered me crazy. For example, one night while we were in the Houston hospital, I went to go find the kitchen which was in room 35. I found the room, walked in, and started rummaging through the drawers and cabinets. In my peripheral I noticed that everyone else in the room had stopped what they were doing and were all looking at me, but I was too tired and distracted to care. Then it hit me: "This isn't the kitchen, is it?" I addressed to the room in general. They shook their heads "no". "This is your private hospital room, isn't it?" They all nodded. I left without another word.

I have many more examples like that, but I can't remember any of them right now (because I'm crazy).

In other crazed mother news, Little Husband has been moved out of the ICU! He was actually discharged last night but there were no rooms on the regular floor so he stayed in his ICU bed one extra night. Our surgeon said this was for the better as it can be a little tricky moving a patient to the regular floor during a shift change. I wasn't sure what he meant, but I suspected it had to do with keeping up with the pain meds. I'd heard that sometimes the pain management orders get lost or don't get followed when a patient moves out of the ICU, so I did my best to manage the situation. I swear I must have spoken with everyone who crossed my path--from the surgeon to the valet--in order to make sure that Lil' H's pain meds were good to go. I was told in no uncertain terms that they were. I spoke at length with the nurse on duty to find out what he'd been prescribed and when it was to be administered. I thought I had all the bases covered.

This morning, after the first restful sleep since this nightmare began, I strolled in the hospital certain that all was well. They moved Little Husband to his new room and shortly thereafter he started screaming. I mean, SCREAMING. I knew immediately that he was in pain. Husband went to get the nurse and came back shaking his head. "The nurse said that they screwed up his pain medication orders when he transferred floors."

"WHAT?" I think I almost had a coronary. I then morphed into Shirley McClaine in that role she played in "Terms of Endearment" (the one where she starts screaming at the nurses because they were late with her daughter's pain meds). After the shot was administered I started grilling the head nurse to find out what happened. She did some investigating and came back to tell me that it had been SEVEN HOURS since Lil' H was last given any meds (he's supposed to get them every three). I was livid. I think my head was spinning on its axis. The nurses kept their heads down and worked as quickly as possible. I can't even remember what exactly I said to the nurses, but I do remember envisioning the freak-out I was going to have on the ICU staff.


"I don't know," she said, "but I'm going to find out!"


With this, I looked around. Husband had left the room. My mom was in a chair in the corner, trying to make herself very small. Everyone was tense.

I couldn't help it. I can usually keep myself under control but I tend to lose it when it comes to my child. He's helpless, after all, and I consider it my full-time job to make sure he's got what he needs when he needs it. I'll calm down before I get crazed and become a helicopter parent.

At least I hope I do.

On a lighter note, our new room has a kickin' view of Downtown Dallas...

On an even lighter note, we've nicknamed Little Husband "Stay Puft" because he's retained so much water post-surgery. It sounds mean, but it's said with much love. He's normally a lean baby but the fluid retention makes him look like a chubby little marshmallow dumpling. So cute!

How come I don't look that cute when I've retained water?

Thursday, February 19, 2009

Little Husband Update

Little Husband is still in the ICU but is doing very well! His breathing and drainage tubes have been removed and he actually drank 4 oz of Pedialyte this evening. The next step is to get him to drink breast milk. This should be no problem---Little Husband was dubbed The Milk Monster for a reason!

Even though he continues to improve and show us just how vigorous he truly is, the doctors do not expect him to leave the ICU and go to the normal pediatric floor until sometime this Saturday. This is good as two of our (and his) favorite pediatric nurses don't work until Saturday.

As you can imagine, Husband and I have taken more pictures of Little Husband in the past week than we have in all the time leading up to this hospital stay. Here are a few...

This is Little Husband with Laura, his favorite nurse. Little Husband definitely has "a thing" for blonds. This picture was taken the day before his surgery and we can't wait to see him smiling and flirting again.

This is him two days before surgery holding his own pacifier which is a rarity. Usually I have to stand there and hold it in his mouth for him. This kid's not spoiled one bit, no siree!

Here he is this afternoon in the ICU, just before drinking the Pedialyte...

...and here he is after the Pedialyte looking like a Ninja. Go Baby Power!

Wednesday, February 18, 2009

He Made It!

Praise God, he made it!

The nightmare is over.

Update #4

Little Husband came off the heart/lung machine 30 minutes ago and is now under observation. Strong little guy! It's almost over. The nightmare is almost over.

Update #3

We just received another update from the OR nurse: the surgeons are almost finished with Little Husband's heart repair. Once they are done with the repair, they will close up his chest and prepare to take him off the heart/lung bypass machine.

Keep those prayers coming--we're in the home stretch!

Update #2

Little Husband is now on the bypass machine...

Update #1

Little Husband was wheeled into surgery shortly after 8 this morning. We just received an update from the OR nurse: Little Husband "went under" just fine, and surgery is about to commence. We were concerned about how he would react to the anethesia since he prove to have problems with being sedated, so this is a tremendous relief. We should have another update in an hour and a half.

Tuesday, February 17, 2009


Little Husband is slated for surgery at 7:30 am on Wednesday, February 18th. Please keep him in your thoughts and prayers. I feel helpless.

Monday, February 16, 2009


It was Wednesday morning and we were driving Little Husband to Houston for a surgery consultation. I was nervous about this trip because he would have to be sedated for his echocardiogram. He had been sedated one week prior during a surgery consult in Dallas, and my gut instinct told me it wasn’t a good idea to sedate him a second time so soon. Sedating an infant is pretty hard-core: the sedative is given orally and tastes terrible, it takes the rest of the day for it to wear off, and the baby reverts to infant-like behavior such as kittenish crying and no muscle control. Not an easy thing for a parent to witness.

Little Husband screamed when he’d been given the sedative in Dallas. Plus, for some reason he didn’t fall asleep right away like most infants do. In fact, it took him 20-30 minutes to fall asleep and even then he woke up after only 20 minutes (he should have been asleep for an hour). I guess our little guy wanted to show us who was really in charge.

He did just that in Houston.

We arrived for the consult on time and were led back to the room where they sedate him. The nurse weighed him and performed the calculations that determined how much sedative Little Husband would be given. I mentioned how he failed to fall asleep in Dallas. I immediately regretted telling her that fearing that she’d give him a little extra, “just in case”.

Just like the first time, Little Husband screamed bloody murder when he tasted the sedative. The nurse and I took turns trying to calm him and 15 minutes later he was finally in a light sleep. We took him to the echocardiogram room where they hooked him up to a monitor and began tracing his tiny chest with their sonogram probe.

15 – 20 minutes into the test, just as the ultrasound tech was tracing the wand around his stomach, Little Husband began to stir and cry out. Husband comforted him. Then the baby started to cry a little more and we noticed his blood-oxygen level start dropping. It went from being in the high nineties to the eighties. Then the seventies. Then the sixties. Ignorantly, I had no idea what level was considered alarming (anything below 85, as it turns out). As the oxygen left his blood, Little Husband became more and more agitated and was kicking and flailing. The nurse, obviously out of more creative ideas, demonstrated her finely tuned understanding of inconsolable babies: she attempted to restrain him by holding his legs down. Little Husband freaked out. They stopped the ultrasound so that we could work on calming him as this was the best way to raise his 02 level. His crying got worse as did his oxygen levels. I remember looking at the monitor at one point and his blood-oxygen (02) level was in the 30’s. I got up on the table to hold him; he was inconsolable. I tried to breast feed him because he had to fast for four hours prior to the echo and I thought he might be hungry. He wanted no part of it. The nurse placed oxygen tubes in his nose but his 02 level would not rise above the 50’s or 60’s. Finally realizing that things were spinning out of control, the nurse called for the cardiologist and then went to go get an infant oxygen mask.

By this time Little Husband was a shade of ashen-grey. His feet, however, were blue.

The cardiologist (who was devoid of a personality) walked into the room and offered some lame advice that didn’t help. Another more competent doctor joined us and offered better coaching. In hindsight it occurred to me that not one doctor ever offered a hand in assistance. I guess the technical stuff is beneath them; the egos in that hospital are mountainous.

“It looks as though Little Husband just had his first tet spell,” the competent doctor told us, “unfortunately this means he bought himself a night in the ICU.”
The nurse held Little Husband in a jackknife position as Husband and I took turns holding the oxygen mask to his face. Various doctors, nurses and technicians joined us from time-to-time as we waited for a room in the ICU. Little Husband, semi-conscious, would struggle feebly against the oxygen mask but then give up as if the effort sapped too much of his strength. Due to lack of bed space, three hours passed before we were led to the ICU.

We walked into the ICU and a team of hospital personnel were standing outside the door waiting for us. The atmosphere was charged as everyone visibly sized up Little Husband’s condition. I couldn’t help myself, I started to cry.

Once in our room, the team of nurses went to work putting in an IV and drawing blood. “Wow—we’ve blown two veins already,” one nurses commented to me. I didn’t know how to interpret that statement.

Grateful to be allowed to stay with Little Husband, Husband and I took our post in some chairs stationed against a wall. It had been at least six hours since we arrived at the hospital. I was in a skirt and high-heeled boots. Husband was in dress clothes as well. The chairs, while padded, were as comfortable as metal folding chairs. Finally, the nurses stabilized Little Husband and handed him to me. He was weak with fatigue and nothing like the vibrant, giggling, rolly-polly baby whose diaper I changed just prior to the start of this nightmare. My mind kept flashing back to how cute he looked on that changing table as he smiled up at me and rolled around, knees drawn to his chest. As I gazed down at his sleeping, cherubic face, I studied him for signs of that little boy but there were none. I silently apologized to him for not protecting him. I looked over at Husband---he looked drawn and tired. I’m sure I did too. My heart never broke so hard as it did that night with the three of us alone in our ICU room.

To be continued…

Saturday, February 14, 2009

Happy Valentine's Day!

How apropos that it's February 14th and we're driving our little Valentine up to Dallas to get checked in for heart surgery.

More to follow.