Friday, September 25, 2009

Tales of TCH: The Beginning is the End is the Beginning

So we're finally home. Nyx is doing well. Her incisions don't seem to bother her much. Eventually I'll get around to posting some pics. The thoracotomy on her right side stretches from just below her armpit to the middle of her back. We've decided when people ask what the hell happened to our baby, we're going to go with the dingoes tried to steal her.

Nyx didn't come off of the ventilator until Sunday afternoon. Her catheter and arterial line followed later that night. She was able to eat a little too. On Monday mid-afternoon, they pulled her central line and moved us to cardiac step down. The privacy and rooming-in made things easier to handle.

We had a setback on Monday. Nyx lost weight for the whatever day in a row (it's all blurry) and refused to take anything from a bottle. Oddly enough, she only wanted my magic tatas. Apparently ICU and NICU babies rarely give up the bottle for the boob since the boob requires more work. The occupational therapist was really surprised and had little info to offer since she normally deals with babies refusing to go back to the boobies. Her suck was perfect. She just gagged constantly on the milk flow.

So we fought against the docs who wanted to put her on syringe feedings or an NG tube with fortified breastmilk. They agreed to give us another day before making any decisions. Sure enough, she munched like crazy on my boobies and gained weight. I'm not sure why the docs were so surprised. I mean, I know I've only been a mommy for, like, three weeks but, um, I know my kid. I wouldn't want to eat either after having tubes shoved down my throat and nose for days. I can only imagine how sore her throat was. Also being high as a kite for a week probably didn't help.

While we were struggling to avoid a feeding tube for the kiddo that Monday night, we also got a call about Bosley. He'd mounted a hunger strike at the pet resort. He hadn't had a drop of water since we'd left him on the prior Wednesday and only a few bites of food. Um, yeah, what the fuck? Why, exactly, did they wait so long to contact us? No idea but you can be damn sure we won't leave him there again. And, of course, they had no issue with charging us the full rate even though he didn't eat, drink or get his meds and slept on the concrete floor rather than bedding. Nice, huh?

So, faced with the reality that Bosley was probably going to croak, Dave had to leave TCH to mount a rescue of our snugglebumpkins. Yeah. I spent days alone at TCH with the kiddo. It was stressful and depressing but we got through it. She thrived. I dealt. Dave nursed Bosley back to health. We came home. The end.

But not really. We'll be back at TCH in six to nine months for Nyx's open heart surgery and full repair of her TOF defects. It's going to be a tricky surgery since Nyx's heart is way worse than we'd initially believed. Her pulmonary stenosis is very pronounced as are her right ventricle defects. She also has an additional vessel branching off her heart (uh, what?) and a coronary artery across and resting against her heart. So yeah. Tricksy.

Luckily our surgeon is the best surgeon at TCH and apparently one of the best in the world. Thank God for that. I don't want some flunky slicing and dicing on my kid, you know?

Speaking of flunkies, avoid, like the fucking plague, the emergency room at TCH. For a group of professionals supposedly versed in dealing with sick children, they were disappointing in their skills. They couldn't get IVs. No one washed their hands or wore gloves. The rooms were dirty. There were sick and coughing kids everywhere. They didn't follow the admission orders for Nyx and kept her in that plague infested hell hole of an ER for HOURS instead of sending us up despite our constant reminders. They showed no respect to a breastfeeding mom. They were rough in their handling of Nyx. They continued to attempt to run tests (EKGs and echos) even though Nyx was having multiple Tet spells and her oxygen saturation levels were dipping into the fifties. There were a few times I wondered if she was going to start breathing again.

Seriously, folks, our kiddo was BLUE before this cardiology resident who looked about twelve finally had the balls to put his foot down with the overbearing nurses and have her moved up to CVICU where she could be better managed. The second we hit the 18th floor, everything changed. The nurses and docs and techs washed or sanitized their hands every time they entered the room or touched a piece of equipment. They gave Nyx a mild sedative to calm her down and keep her oxygen saturation levels as stable as possible. They were gentle and calm with her. The doctors and surgeons and nurses explained every intervention or test they performed.

So yeah. From the first floor up, TCH is a great place. First floor? Ninth level of Hell.

Anywho. Off to eat. I'm starving.

Saturday, September 19, 2009

Tales of TCH: Part the Second

So Nyx progressed well today. She finally woke up around 1:30 in the afternoon. She's obviously incredibly confused. Her eyes dart back and forth and she tries to breathe, gag and cry. The tubes down her nose and throat make those things impossible.

They were able to remove her chest tube and wean her down to support breathing on the ventilator. Unfortunately, she's so blitzed on morphine for the pain she isn't able to breathe on her own. They gave her a few trials today but after half an hour or so she'd get too tired to breathe and would just, well, stop. And that's not good. Standing there, watching your kiddo turn bluish because she's not breathing is rather unsettling. She'll spend the night on the ventilator and we'll try again tomorrow.

We're not sure how many more days/nights she'll spend in the CVICU. Once she's breathing on her own and eating, they'll be able to move her to the main floor which means we can room in with her. Until then, this is where we'll be, camped out on Tower 17 and 18.

Tonight we weren't able to get a room in the Ronald McDonald house so we're roughing it in the CVICU waiting room with a handful of other similarly stranded parents. Honestly, it's not so bad. Dave and I were able to grab two of the recliners available for sleeping. They sure as shit beat the tiny couches and chairs.

The downside? I have to travel from the 17th floor to the 4th floor every three hours tonight to pump and leave my milk at the NICU reception desk since the Milk Bank is closed after five in the afternoon. The up and down wouldn't be so bad if the elevators weren't on lock down from ten until six. What does that mean? Well if I want to go anywhere beyond the 17th and 18th floors (the ones my CVICU parent badge clear me for) I have to go all the way down to the first floor, get off the elevator, wait for a security guard and have him send me up the floor I want.

Sounds tedious but simple, huh?

Yeah. Not so much. Just trying to get to my 10:30 pumping session nearly had me blowing a pupil. First I hopped on at 17 and went down to 1. I grabbed a tag from the front desk, got back on the elevator and had a security guard beam me up to 4. Except I didn't go to four. I ended up on 3 and then zoomed up to 10 where the elevator suddenly stopped and sat idle for nearly ten minutes. Finally it dropped straight down to 1 again. I get off and the security guard apologizes for putting me on the elevator currently on the fritz. Gee, thanks.

So I get to four. I pump. I drop off my milk. I get back on the elevator and hit the first floor but I end up heading up to the fifth. WTF? A random guy hops on with me and we get to ride the elevator all the way up to the 16th floor, stopping at every single floor, of course. But the doors don't open. We just sit and wait and then move. Uhhh, what? And then we hit 16 and drop like a rock to 1.

I hop off and race over to the second elevator bank. (Only certain elevator banks reach specific floors in the tower. To get to floors 1, 3, or 16-21, you have to use the express elevators. To reach 1, 3, 4-15 or 16, you have to use a different set. Yeah. I know. It's ridiculous.) I jump into the first elevator, swipe my badge, and hit 17. But I don't get a green light. The doors close. I wait. The doors open. The security guard gives me a curious glance. I explain my predicament. He scans his badge and I rocket up to 17 where I get a new badge so I can get up to 18 see Nyx again.

As I'm leaving the 18th floor after a quick visit with my kiddo, another mommy from the CVICU starts racing toward me and shouts at me to hold the elevator. She'd been stranded on the 18th floor for nearly an hour waiting for a familiar face because her badge crapped out on her too. Apparently the elevators here need an old priest and a young priest.

Speaking of priests, don't hold your breath for one. Seriously. We asked for a priest the night we arrived and still haven't seen one. But rabbis? Can't swing a cat without hitting one. My mom is pretty miffed about the lack of support from the Church. She's already been on the phone to the bishop, her priest and deacon in search of answers as to why no one has come to see our kiddo. She and Dad have decided they'll find a church tomorrow, grab a priest and drag him over here.

Yeah. Mom and Dad are here. Dad drove in from Artesia last night, got to E-town super early this morning, slept for a bit, and then hopped into the truck with Mom and made the drive to Houston. Dave and I don't know what we'd do without the support of my parents. Mom came down to help us before Nyx was born. Dad and my siblings came down after Nyx was admitted to the NICU at St. Jo's. Mom stayed with us until Nyx was discharged. She cooked, kept house, and did laundry so Dave and I could spend our days at the NICU and not worry about real life poo. And now they're here giving us emotional support. We know how incredibly lucky we are and are so thankful.

So anywho. Long update tonight. I'll post tomorrow with another update on Nyx. Until then, we'd appreciate any good vibes you can spare for the kiddo!

Thursday, September 17, 2009

Tales of TCH: Part The First

So I'm sitting in a room at the Ronald McDonald House at Texas Children's Hospital. Nyx took a turn for the worse and things got hairy really fast. She had a couple of Tet spells (turning blue, basically) on Tuesday. By Wednesday morning at her cardiologist visit, her oxygen saturation levels had dropped to the high sixties and low seventies. Our cardiologist got on the horn and within minutes we had orders to high-tail it to TCH. We were admitted through the ER a little after five and then to the cardiovascular ICU (CVICU) an hour or so later. She continued to have low sats so the decision was made to get her into surgery ASAP.

This morning at 7:15 Nyx was wheeled into the OR for a shunt procedure. She's just too tiny for the full repair so this was the best option at the time. A little after 2 in the afternoon, she emerged from the OR after the successful placement of the shunt. Her oxygen saturation levels are in the mid-nineties now and she's pink! Pink!!! My baby is pink!!!

This is a big deal, folks. Until today, Nyx has been this weird bluish purple pink depending on whether she's calm or crying. Eventually I'll get up some pics and you'll be able to see the difference.

She's currently sedated and in the CVICU until further notice. She has a long way to go before we leave the CVICU. She has to come off the ventilator and start breathing on her own again. She'll have her chest tube removed. (They had to deflate a lung to get the shunt into place.) She has to start eating again. And so on and so forth.

But we're hopeful she'll make a speedy recovery.

So anywho. That's what's going on here. It's been an incredibly stressful and harrowing forty-eight or so hours. I don't think there's any experience quite as heart wrenching or terrifying as watching your fifteen-day-old baby being wheeled into an OR for heart surgery. It's just...too much.

But we're hanging in there and slogging through it. It's sort of sad but this is our new normal. We've spent more time in hospitals than we have at home. And it sucks. Big time.

Saturday, September 12, 2009

The Adventures of NICU Nyx, The Finale

First of all, huge thanks to all the family, friends, and even strangers who have called/texted/emailed/commented/smoke signaled their best wishes and even offers of help when it's time for Nyx to have her surgery. You have no idea how amazing it feels to have such a wonderful support system available to us and the knowledge we won't have to go bankrupt on hotel fees while she's at TCH.

So Nyx is home. She was seen on Wednesday morning by a pediatric cardiologist out of Austin who moved around his schedule to drop by the NICU. Apparently she's the first baby in the St. Jo's NICU he's ever gone out of his way to examine. Yeah. Our kiddo is super special. You wouldn't believe how popular she was among the TAMU medical and nursing students, Blinn Nursing and EMT students, and even flight medics/nurses. Dave and I allowed them to listen to her heart (she has a hellaciously loud murmur) when she wasn't fussy. You could tell it really helped them quite a bit to see/hear this condition, especially the flight nurse.

Anywho. Back to Dr. Schaeffer. Nyx has what he describes as "garden variety TOF." She's not the very worst nor best case scenario. She's sort of pink Tet most of the time. The biggest issue Dr. Schaeffer discussed with us is Nyx's size. She's small. Like tiny for nearly 40 weeks. She's 18 inches long and just reached 6.5 pounds on Friday. It's the double whammy of that two vessel cord and the wonky heart.

Her size rules out most of the heart surgeons except for two, one in Houston at TCH and another in Dallas. We've opted for the Houston surgeon because he's close so we can control costs and because he does a lot of these surgeries. Dr. Raju (one of our neos) describes these repairs as the bread and butter of Dr. Frasier's team so that's comforting in an odd way.

The plan for right now is to keep Nyx at home as long as she's stable to grow. She'll continue to trend down (deteriorate) over the next few weeks or months until our hand is forced for the surgery. Fingers crossed she'll reach ten or twelve pounds before she her oxygen saturation levels drop to the high sixties. If she's still too tiny for the open heart surgery, we can try a temporary shunt until she's bigger. At this point, it all depends on the size of her pulmonary arteries. We won't know about those until we meet with another pediatric cardiologist on Wednesday.

Yeah. We're seeing a lot of doctors and planning on lots of tests. I'm trying not to think about costs but I figure we have a million dollar baby on our hands. Christ only knows how we're going to pay for all this but we'll figure out something. We always do.

Oh, and if you ever need heart medication for an infant, be prepared to lose your effing mind before you find a pharmacy able and/or willing to compound it for you. For fuck's sake, I thought I was going to blow a pupil Wednesday afternoon trying to get Nyx's propranolol prescription filled so she could be discharged the following morning. We finally, FINALLY, found a Walgreens with the medication in stock and the willingness to compound it for us. I almost wept with relief. Now I have to be hyper vigilant about keeping the 'scrip filled.

Sunday, September 06, 2009

Adventures of NICU Nyx, Part Two

Today marks Nyx's fourth day in the NICU. She's making progress. She's come off of oxygen and is on room air. She's had an IV removed and is no longer on the TNP (Total Parental Nutrition.) Her feedings have been increased to 40 mL. She doesn't have jaundice after all. Her umbilical line will stay in for a while as will the NG tube. They're slowly weaning the flow of room air through her nasal cannula. Her pulse ox levels stay in the 80s with occasional dips into the 70s--and that's a problem.

On Wednesday, a cardiologist will evaluate Nyx to decide if she stays in our local NICU for a few more weeks or if she goes straight to TCH for open heart surgery. Our preference would be for Nyx to get a little bigger and stronger before they start slicing and dicing but if she continues to struggle with oxygen saturation our hand will be forced.

This limbo of uncertainty is incredibly difficult. We can't make any plans beyond the next three hours. Tentatively, Dave will return to work sometime next week if they decide to keep Nyx at St. Jo's. We're not flush enough for him not to earn a paycheck while she's in the hospital. We try not to think about the financial impact this is going to have on our little family but, obviously, it's going to be great.

Our stress levels are high. Dave is trying to take care of me and the baby. He crashes at night but hops out of bed the second our alarm goes off. I think I've slept maybe twelve hours or so since giving birth four days ago. The rest of the time I just lie there and think--or cry.

Or I'm up pumping. Nyx can't breastfeed so I'm doing whatever I can to make as much milk as possible for her. My milk is starting to come in fully today. I can't even tell you what a relief that has been for us. Friday was particularly rough because I couldn't get more than a few drops of colostrum. I felt like such a fucking failure.

Emotionally and mentally, we're both worn out. This is experience is overwhelming--and it's just begun.

Friday was the lowest point for me so far. The reality of a baby with a congenital heart defect finally hit me. I'd been in the post-labor daze before that so I hadn't really had time to process what, exactly, it meant. I couldn't stay in the hospital for another night because our insurance wouldn't cover it (Fuckers!) so I was going to be discharged in the afternoon. I had pumping issues and I'd spent the night listening to other mommies in adjoining rooms tending their babies.

I cannot begin to explain to you how empty that feels. For nine months, you've carried this tiny life inside you. You've felt her kick and move. You're never alone. It's comforting. And then you give birth. Normally you have an infant to hold and cuddle and feed and love on but when you don't have that, when your baby is in an isolette in another part of the hospital, it is devastating. There is no word to describe the profound emptiness.

When my nurse wheeled me out of the post-partum ward, I had a breakdown. All these people in the waiting room gave me pitying looks. Downstairs in the lobby it was the same story. Most mommies in the maternity ward wheelchairs leave with a baby in their arms. I had a messenger bag and a sac of breastmilk collection bottles. Seeing the empty car seat set me off completely. I wept as we left the parking lot.

We stopped by Target to pick up a breast pump and the met Mom and Dad for dinner--my first real meal in days. When we walked into the restaurant, guess what song was playing? Won't Go Home Without You by Maroon Five.

What the flying fuck?!?! Seriously. I started laughing at the absurdity of the moment. If fate or God or whatever really wanted to fuck with my mind they couldn't have picked a better way to do it.

After our night visit, we finally went home. I sobbed in bed for quite a while. Dave held me and made it better. Having that empty bassinet next to our bed wasn't easy.

But I'm better now.

We're settling into a routine. I wake up at 6 to pump. We shower at 7 and have breakfast. We leave for the hospital around 8. At 9, we have our first visit one hour visit of the day. I pump in the back room of the nursery at 10 and then we spend a few minutes in the waiting room before heading down to the cafeteria for lunch. At noon, we have another one hour visit with Nyx. I pump again at 1 and then we sit in the waiting room. We visit again at 3 and pump at four. Then we go home and eat and deal with real life crap until 8 when we leave for the hospital again and our last visit at 9. I pump at 10. We leave the hospital. We go to bed. I get up at 2 to pump and then again at 6 and we start all over again.

Yeah. We see Nyx four hours a day. We finally got to start taking her out of the isolette to hold and feed her. That helps immensely. But it's still not enough. What new mom and dad want to only touch and feed and love on their baby four hours a day? It's an excruciating and unspeakable torture.

But we're getting through it. We have no other choice.

Saturday, September 05, 2009

Adventures of NICU Nyx, Part One

Or I Can Haz Baby With Heart Defect

Calixta Nyx was born on September 2, 2009 after, like, 17 hours of labor. On Tuesday afternoon, I had an OB visit that went not so well. My blood pressure had spiked dangerously high (165/104, 167/109, and 139/98 after 30 minutes of resting with my feet up) so we had two decisions. I could go on complete bed rest until the baby came on her own or I could be induced. Since my cervix was ripe, I chose induction as the safest route.

That night, though, my water broke at a quarter 'til one. My contractions started almost immediately so I labored at home until 5:30. I was supposed to call the hospital at that time to get instructions for my induction. Dave gave them a ring and they told us to come on over since my contractions were three to four minutes apart and I had the blood pressure issues.

I labored until almost two in the afternoon without meds and minimal intervention. I had two amazing nurses who were totally respectful of my wishes for a low intervention birth. Mom crocheted on a couch and timed contractions for us. Dave was unbelievably supportive. He walked with me and held me through contractions. He kneaded my back and encouraged me through the rough spots. It was almost textbook.

Until my blood pressure started to spike. It was high all through labor but by noon it was back in the 160s. I had two choices at that point: magnesium sulfate or an epidural. Around that same time, I stopped progressing. I had labored for three hours without progress. My cervix was completely effaced but just wouldn't dilate beyond 6 centimeters.

I had a moment of panic when I realized something wasn't right. I chose the epidural to lower my blood pressure as quickly as possible and the pitocin to get my cervix moving again. Neither were particularly bad. I would have preferred not being stuck 7 times by the anesthesiologist but whatever. He got the epidural in and I got my pitocin and my cervix went from 6-10 in less than an hour.

I gave one test push a few minutes before four in the afternoon. The nurse's eyes widened. The next thing I know they're all running around setting up the room. I could feel Nyx right down there, just waiting around so when I got the okay to push again, I did. In a handful of pushes, there she was.

The cord was wrapped around her neck twice. That wasn't cool. She started screaming after a little sternum rubbing and was plopped onto my chest. I held her for a while before they took her over and cleaned her up a bit. Soon she was back in my arms and trying to breastfeed. She latched on for a minute or two but seemed disinterested. Dave took her over to the nursery to be cleaned and weighed while I was cleaned up and moved to my post partum suite. He left a little after that to find some grub since he hadn't eaten all day.

After an hour or so, I started to worry. Where the hell was my baby? I asked the nurse and was given the runaround about how it takes a little time, blah, blah, blah. I knew something wasn't right.

And then the neonatologist came inside my room and delivered a bombshell.

Nyx wasn't breathing well. She had a massive heart murmur. Something was wrong. Seriously wrong.

I went cold. This wasn't right. I'd had a great pregnancy and a shit load of ultrasounds, all of them unremarkable. How could my baby have a heart problem?

When Dave returned, I had to break the news. He was clearly upset. A little while later, a second neonatologist came into the room. They'd done a quick xray and could see obvious abnormalities of her heart. They were waiting for an echo. They wanted to give her various medications. Did we have a preference as to which hospital we might send her to?

We made decisions as quickly as possible and hoped for the best. Dave was able to go down to the NICU to see her and speak further with the neonatologists. I had to wait in the room. It was excruciating.

Soon Dave returned and described Nyx to me. It was painful to hear. I imagined the worst. I was told I could go see her so my nurse bundled me up in a wheelchair but when we arrived they wouldn't allow us into the nursery. They were doing a "procedure" of some kind. I could hear my baby shrieking but couldn't comfort her. I was devastated.

Not long after, Dr. Hilal, our neonatologist, returned with worse news. They were going to fly her out to Texas Children's Hospital. I could come see her but only for a moment. Again, my nurse packed me up and Dave rolled me down to the NICU. There were wires and tubes every where. She looked a little blue in the hands and feet. It was all I could do not to break down right there.

And then Dr. Hilal gave us some better news. The cardiologist out of Austin who had just studied her echo felt an immediate move wasn't necessary. They were going to try some non-invasive therapies. Suddenly there was hope--and a diagnosis.

My baby has Tetralogy of Fallot.