Broken Heart Part 8

This is from a journal I kept 10 years ago when my daughter had surgery. I thought it might be helpful to some who are just starting this journey with tetralogy...

April 10, 1999

6 am

Last night's xray was good enough to convince them to not do a chest tube for her left side, but her fluid output has slowed down and I'm worried she's destined for another one.

She has been out so much. I'm anxious for her to be awake more of the time but I don't want her to be miserable. Our nurse told us not to comfort her when she cries - she needs to cry to loosen all the phlegm in her system. We haven't been put to the test yet, she's pretty quiet and the few times she does cry she stops very quickly all by herself. As if it's too much effort.

We are staying, or rather sleeping, at the Ronald McDonald house since we live 45 minutes away. Walking out into the sunshine is so strange, it's as if I expected the world to stop rotating while all this happened. I got about 3 hours of sleep tonight and 3 earlier when Dad and Christy were watching her and I feel refreshed. Three is about the most I can do because I have to pump out otherwise it starts to be pretty painful. Even with pumping I was having a pretty difficult time. Without her my system just doesn't do as well.

I need her.

.......

9:30 pm

They've taken Sierra off all of her hard core sedation and narcotics and she's doing well on tylenol. I had been getting concerned that she was just too out of it, especially when one of the nurses mentioned the need to let her cry. She isn't going to cry if she's asleep constantly.

For the first time in days I got out of the hospital/medical center. Christy and I went to lunch at a real restaurant and then I grabbed another 3 hours of sleep. I found myself struggling to figure out what day it was. The normal rythm of life has disappeared in the blur of monitors, tubes and wires.

We were talking to some other PICU veterans about their kids, about Sierra, about the whole experience of being here. About the new way we measure days - by medical procedure. Four days ago, heart cath; three days, surgery; two days, removal of the drain tube; yesterday; the chest tube. We all do it. Theo Anderson's family are the real veterans and they give us tips on different things, give us ideas on dealing with being here for our extended stay. We learn what questions to ask, suddenly immersed in this strange world we are learning the language, using the words like incantations to help our little ones. We hear other's more tragic tales and secretly thank God that our road is not as hard. Hell, it's hard enough.

We even get a little competitive - is her baby sitting up? Baby Tovar doesn't have a chest tube and he had the same surgery as Sierra. And what's this about him being moved out of here to the third floor? Then you learn that he isn't moving and now needs a chest tube, or that her baby has had a set back and you feel bad about your silent competitiveness. I want all of us out of here. All of us.

Sierra seems to be swelling on the left side and her breathing looks a little labored. No xray till tomorrow.

Broken Heart Part 7

Installment 7 of Sierra's Tetralogy of Fallot surgery...

April 9 , 1999 through the night

Midnight

Adam went to get some sleep. After a bit the doctor showed me her last xray. Sierra has some fluid building around her lungs. This is the kind of thing that can lead to a collapsed lung. They are treating it by giving her something to kick her kidneys into overdrive. So we're back to praying to the patron saint of pee. I couldn't decide if I should call Adam and was just crying a bit as I swabed her lips when the phone rang. It was Adam. We talked a little and I felt a little better. He's going to try to sleep so we can be fresh.

I think we've had 10 hours sleep between us both over the last 2 days.

2 am

Adam couldn't sleep so he came back. Sierra is putting out like a champ. I hope this means it's going to be okay and they won't have to put in a chest tube. Dr. Zuckerman, the intenive care doc, is catching a quick nap while things are quiet. We'll ask him how it looks when he comes back around.

3 am

Dr. Z (which is what they all call him here) says he thinks she sounds better, but we are still playing the waiting game. I convinced Adam to go to sleep, I'm still wired. Just wait till 6 am, I'll hit the wall hard.

She's breathing so hard - 60 to 70 times a minute. My poor little one...

5 am

She's still putting out more than she's taken in, but it's slowed down. Her eyes aren't as puffy. Her temp was up to 100 but they gave her a tylenol and it's back down.

I'm working on her embroidery project, the one I started when I got pregnant. Of course she was a little early so I didn't quite finish. It's a nice focus point for me to work on while I sit there, staring at her, not wanting to wake her up.

I'm getting sleepy. I'll hang another 30 minutes, then get Adam so I can crash for a little while.

1 pm

They ended up putting in a chest tube on Sierra's left side. The fluid had continued to build and build and they decided that she needed the relief. Immediately she seemed to stop breathing so shallowly.

Both Adam and I are exhausted. I got 2 hours sleep last night, he got maybe 2 or 3. I finally got Adam to go to the Ronald McDonald house. He just called. He went for a run and is now going to try to get 3 hours of sleep. Now that Christy is here I'm going to go too - right after I pump out (breastmilk) and have some lunch.

Her xrays are all up in the little viewing area, and seeing the fluid along side her lungs make it all seem so simple. Water in? Suck it out. Broken septem? H-E-B twist ties, the Dr. joked, pointing to the wires which looked like little letter "p"s tied around the bone.

She has seen me and Adam both. Not much crying yet. I know she's going to be scared and I wish I could do something, anything to change this room into a place she would see as safe. I mean stuffed animals will only take you so far.

They may have to add another chest tube to the other side where fluid is building around her lung. But ....

!!

I just got to breastfeed her! She ate great! I know they are still monitoring a million things (her calcium and potassium are a little low and that fluid is still a problem) but for a few minutes it was just me and Sierra.

Together again.

9:30 pm

Sierra is getting her first little sponge bath. She's a little uncomfortable, but not bad.

While Adam and I slept, Christy and Dad took care of her. They had some challenges. The CPT (chest physio therapy - or more apppropriatly chest pounding therapy) was too painful and they had to stop the therapy and get her some pain medication before going on.

And there is only one way to know it's too painful. She was crying.

They also had to contend with some bleeding and struggles with the nursing staff. They were exhausted afterwards. And that was just 4 hours, Christy noted.

We are waiting to get her xray back to see if she'll need another chest tube. But her breathing is so good, nice, deep breaths, not so rapid, I have a feeling it's taking care of itself.

I hope.

It's a roller coaster ride with the first big dip being the surgery but with many more following it. I can't imagine how some of the other parents in here have done it - those that have been here for weeks. I've had about 10 hours of sleep in 3 days and feel like we've done this for a year.

Adam said it will be nice to get back to a normal life like what we had before. I told him it was going to be even better since we don't have this hanging over our heads. It's been like there was a huge 18 wheeler closing in on us and it finally went past. There are still some big trucks on the road, but those will be cake. I mean can you imagine what it'll be like when she breaks an arm or cuts her leg or some other childhood injury? Adam laughed "It'll be like nothing after this."

No kidding.

Broken Heart Part 6

This is the sixth installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). I'm reposting it since I thought it might help other moms going through the same thing...

As I re-read this installment I remembered a friend who donated blood for Sierra specifically. He has a rare blood type that they use for "blue babies" like Sierra, but he had stopped donating blood for some time. He rolled up and gave during our blood drive. He swore he only had two beers the night before, too. What a guy. So here's a shout out to Ross at News 8 in Austin (are you still there these days?). Thanks again, my friend.

April 8, 1999 4:00 pm

Sierra is in Pediatric Intensive Care Unit (PICU to us veterans) and is doing really well. She's off the respirator which is a huge relief. She had been moving around quite a bit and it's a bad thing to do with a tube down your throat. We spent most of the night trying to keep her still, holding her head, cooing softly. They had to give her quite a bit of medication in an attempt to bring her squirming under control.

By morning they had maxed out what she could get so Adam and I worked as well as we could to keep her calm.

Then they took out the tube. I felt like we had just landed on the moon. I put the second pink ribbon in her hair (the first went in when she arrived in PICU). We had won. We were past the 12 hour window!

We had one more scare when she stopped peeing. The kidneys are not fond of the whole by pass thing, apparently. For four hours she went from previously light peeing to none at all. The possibilities included more tube for a form of dyalisis. Our nurse, Debbie, decided that it might be the result of a blockage in the tube and after some false starts by the nurses and a few hours of nail biting they decided to let the doctor give it a shot. Dr. Schroeder got the catheter in and there it was. Liquid gold.

She still has tubes everywhere and I've struggled for an adequate description:

- a victim of crazed garden gnomes and their hoses

- Sierra Gulliver, taken over by the lilliputians (thanks sis)

- a baby borg from Star Trek, with two pink ribbons

- the sweet princess from the place of strange plastic accessories...

Ah, it's nice to be able to kid around, finally.

Channel 12 was here to interview us about the blood drive. They are having a blood drive at the station and wanted to put a face to giving blood. Sierra was the face. It'll be on tonight.

They filmed her in the bed and I asked them to just take a little video of her pictures as a normal baby. The blood drive has been a success I've been told, but I don't really know how it's gone. I know that 's been on the radio and that we are very blessed with wonderful people who have touched our lives during this incredibly difficult time. I wondered if I did the right thing - allowing her to be "used." But then I think of all the people who came through for us and how important blood donation is and felt that this was one way we could, as a family, give back.

There are no amount of thanks that are adequate to the task. I guess we'll just have to throw a party!

Watch this space for more good news...

Broken Heart Part 5

This is the fifth installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). I'm reposting it since I thought it might help other moms going through the same thing...

April 7, 1999 - 6:30 pm

She's doing fine.

The surgery was a longer than they anticipated; her heart had abnormalities that didn't show up on either the cath or the xray. I tried to understand what they were saying, but in my haze of worry all I got was that it was tougher than they expected. As a result they had to cool her waaay down, which caused her to bleed a little more....

But I'm getting ahead of myself.

I got about two hours of sleep last night, curled up in a "reclining" chair. Adam held her for the last part of her morning and at 6:30 am we got up, got ready. Or as ready as you can get.

As we said goodbye to our family and headed into the pre-op room, time began to slow to an excruciating crawl. I held her for a awhile, hoping I'd be able to take her into the operating room for her knock out juice. But then Adam took her and she fell asleep in his arms. Rats, I thought. Now he gets to take her.

Don't think for a minute this was just an accident on Adam's part. He's a clever guy. But the tables turned as we spoke to the anesthesiologist and she said "Who wants to go in with the baby?"

"I do" I said, tearfully. "But I don't want to wake her - I guess he'll take her."

"Well he'd have to hand her over anyway - someone has to put on the bunny suit" She indicated the white zippered disposable outfit.

So now it made more sense that I'd take her in instead of Adam and I jumped into the bunny suit. She woke only briefly before they knocked her out.

And she's still asleep right now.

How can I describe what it's like to wait during your baby's surgery? One minute I was doing fine, but as the hours passed I was ready to kill anyone who didn't have information on how she was doing. It's Chinese water torture, bamboo shoots under your nails, and a cave in all in one. You want to escape, but there is no where to go. Every bit of news brings it's roller coaster of emotions. News comes so slow and sporadically it is like word from the front lines.

And you feel frustratingly helpless to affect it.

As she lies here in PICU, with more tubes than a fuel injected vehicle I am so grateful to be on the other side of this immense ocean of worry and fear. The next 12 hours are critical and I have a million more things to share but I've got to get some rest.

My baby needs me.

.

Broken Heart Part 4

This is the fourth installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). I'm reposting it since I thought it might help other moms going through the same thing...

April 7, 1999 - 2:30 am

I guess it was two weeks ago when Adam first asked me if I thought Sierra's fingers were looking a little purple. In the last few days I've noticed the nail beds are almost always purple - it doesn't fade after a few hours. Today, when they did the pulse ox in the Cath lab - before she went under anesthesia - her reading was 76.

Normal is in the 90s.

The good news is that the catherization went very well. Sierra didn't have a tet spell during the procedure, and the coronary arteries are not in the way of the surgeon's knife. She as a few unusual features about her heart. The two veins coming from the head do not connect, but instead go independently into the heart. This creates some complications for the bypass procedure, but apparently it's something they've seen before.

They do these things every day. Every day they look into the eyes of terrified parents and talk confidently about what comes next. They click on their computer screens as we watch, lost in the sea of grey images, describing parts of our daughter's heart in words so foreign I wonder if it can even be considered english at this point.

They seem so at home in this world.

Before the cath, I rubbed on Dr. Schroeder's chest and said "lucky, lucky, lucky." I think he misunderstood me - he said "it's not luck, it's skill and knowledge." "We already assumed you've got that," I told him. But a little luck these days can't hurt.

After all, he was the one who told us, when we asked why this happened, that was just bad luck.

..........

Our entire family is here, practically. We overwhelm the waiting room and it is both comforting and too much. Everyone is here to support us, but if one more person tells me she's going to be fine, I'm going to kill. Friday I was in the car describing to my niece how I feel when I hear all the stories of people who have had some heart surgery years ago and are now just fine. I long to say "Of course I wouldn't hear from any of the dead ones, would I?"

Sigh. Equally bad is "I just knew she'd be fine" which we heard after the cath went well. I bite my tongue. I know people are trying to be helpful, positive. But no one knows. I do now. And I won't say these things to my friend when her little Samantha has her surgery.

...........

Sierra is doing pretty well. She will laugh still and play with her toys and while she seems scared sometimes, she also seems just normal other times. They've been good about minimizing her disturbances tonight so she can rest. Once again I've seen what a difference people make. Our nurse tonight, Patsy is great with her, letting us make minor adjustments in the routine to keep her comfortable.

............

So tomorrow is the surgery. They'll pick her up at 6:30 and at 7:15 we'll watch as she gets wheeled into the operating room. I feel confident about it, but I'm really scared. Right here, next to me as I type this is a baby swing that was donated to the hospital in "memory of baby Jasmine Taliaferro." Sierra swung in it earlier.

I told Adam we can donate something of Sierra's - but it will be in HONOR of her. And she can visit it when she comes in to have her own children.

I wonder if I will get any sleep tonight.

Broken Heart Part 3

This is the third installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). You can start with the first part here.

April 3, 1999 The Tour

When I signed up for us to take the tour at the hospital where Sierra is going to have her surgery I figured we'd be going on one of those PR tours. You know, "here's our big fancy machine", "here's our OTHER big fancy machine," etc. Milling around with other parents or visitors, spying where the snack machines were, noting which rooms had the Barney motif.

But it was nothing like that. As soon as we got there, I realized we were the only people on this "tour." Our tour guide showed us where we'd check in and let us see a few of the rooms were the kids stay. Then she said "On Tuesday, Sierra will go to the Cath lab - it's on the third floor." She pushed 3 in the elevator.

We weren't getting the PR tour. We were getting the preview to Sierra's time in the hospital. We went into the cath lab where they will do the heart catheter, met a tech and he went over the procedure. "You'll be here with her until she falls asleep..."

We saw the needles, the crash cart, the banks of monitors with someone else's wavy lines speaking some secret code across the silent screen.

We went to the operating waiting area. "You'll be here with her until they wheel her into surgery..." We went into the different waiting areas and were advised to "stake out an area for our family." We went into the neonatal intensive care unit where she will be for a few days (3? 5? they aren't sure).

It was so in our face. No hiding, no denying. Adam said he was still considering running off with her before the surgery and I can't say I blame him. We both had moments during the tour where we just broke and the tears flowed.

"I can't make this easier," our tour guide said. "I can just explain where everything is ..."

I'm not sure if she was saying this for her sake or ours.

I'll be updating this page during the surgery, it'll be the only place for news - so keep us in your thoughts on the 7th and I hope to be back with only the best possible news.

Broken Heart Part 2

This is the second installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). You can start with the first part here.

The anniversary of her surgery is coming up as well as a big milestone - some children who have had the corrective surgery have a sudden heart attack before they reach 10 years old.

Sierra is now 10 and a half.

I decided to repost this since it might help others who are facing the same journey with their little broken hearts.

---------------------------------------------------------------------------------------------

January 31, 1999


Sierra's surgery is scheduled. The big day is April 7th, but she'll go in the hospital on the 6th for her heart catherization so they can get a good diagram of her heart.


My sister once said that this whole thing was like being told that your child was going to be hit by a bus and there was nothing you could do about it. Now we know the day she's getting hit by a bus. In some ways it's a relief to have a date; in other ways it's really terrifying. Now my life seems vividly divided into the time before her surgery and the time after her surgery. I find myself in meetings and during phone calls thinking "okay, we can make that, it's two months after her surgery." or "that's 2 weeks before her surgery, we can work that in."


As time had gone on these last few months, I'd started thinking along the lines of "hey, they do this all the time. it's no big deal." But that is bullshit. This is the biggest deal in the whole fucking world and all the statistics from all the experts can't change that for me. I know they do amazing things these days. And I was perfectly happy to read about them happening to other people. Then I'd sit there with the paper saying "Those poor people. Isn't it amazing how advanced technology is?" as I turned the page to the next human interest story.

But there is no way to turn this page without living it.



At the cardiologist's we went over the potential complications [it's rare that a child will go through this procedure without experiencing at least one complication]. Scary stuff like a collapsed lung, irregular heart rhythm, fluid around the heart or lung, etc. We also went over the risk points in the surgery. Like will her heart restart after it's been stopped for 2 hours? How will she be doing in the critical 6-12 hour window after surgery? Will she'll get an infection, will everything will hold, will everything be okay? God, I don't want to do this.


Sometimes, the doctor said, the mother will hold the baby as she's being put under general anesthesia to help ease her fears. Can you imagine anything worse than holding your child as they knock her out and take her from you? Handing her over while knowing the brutality of what is going to happen - the cutting, sawing, patching. I might end up running away with her down the hall, tubes and gown flowing behind us. And when I reach the window, I'll take that step and we'll just fly away from this silly reality and go somewhere where little baby girls don't have to stop their hearts in order to live.

Broken Heart Part 1

Ten years ago, on April 7, 1999, my daughter had open heart surgery. She was seven months old. During that time I was "blogging" - maintaining a web journal of my pregnancy (believe it not, I coded it myself).

It was a tough time in our lives, but the journal helped - and not just me. I had people who were facing something similar and they read through the journal to help deal with their own scary times.

So I thought in recognition of the 10 year anniversary of that time, I'd revive that journal. Maybe someone out there needs this. Or maybe it's just important for me to remember it all again. This is the first installment - when we found out and a little of the thoughts running through our minds and hearts.

For the next few weeks, the past and present will mix and meld. It'll be a mess. Makes sense.

----------------------------------------------------------------------------------------------------------------
8/19/1998

Sierra was born by c-section at 11:07 pm, 34 hours after I had been admitted to the hospital, with Adam on hand to witness. She weighed 6 lbs, 11 oz, quite a heavy weight for what they figure was a month premature.

I watched as her light skinned body was carried to the bassinet where a neonatal team was waiting to test her lungs, provide oxygen if needed. And I heard her cry, and relief flooded me. I was ready to drift to sleep when Adam brought her to me. I looked at her, my new little girl. I was like a wolf mother, eyeing her pup for the first time. All I could think of was finding some sort of identifying mark so when I saw her again I would know it was her. There it was. A little stork bite (red mark) just above her lips. I’ll remember, I’ll remember, I thought.

I asked Adam to go with our little girl as they took her to the neonatal intensive care unit to monitor her breathing, heart and oxygen level. Adam fell in love with her immediately. I woke up to the most excited man on the planet.

I kissed her 30 times, he said, glowing with joy.

When I saw her some hours later, I fed her with my body, feeling the rush of love with every moment.

Baby Sierra

After a few days in the hospital, we discovered that Sierra had a heart murmur. After speaking to some specialists we learned that she has a heart defect known as tetralogy of fallot. I’ll be posting some links here for those interested, but the scary part is that she’ll need open heart surgery.

The doctors would like her to get to 6 months old, just to be a little bigger and a little stronger before having the surgery. I can’t begin to say how hard this news was to take. Our little angel, with a broken heart.

My sister Christy had flown in from Chicago when I started to go into labor and was there when we got the news.

The shock and sadness overwhelmed us all. I don’t know exactly how we are going to make it through the next few months, but I know we will.

And I know that this determined little girl will make it through the surgery she needs. She’s already proven she’s in charge and won’t take no for an answer.

Through this I know that many of us will learn even more about what really matters. Maybe we’ll all heal some of the fears and wounds in our own hearts as she heals hers.

I just ask that any one of you who read these pages to send your prayers and thoughts our way...

(part 2)