Sunday, October 31, 2010

Babies' First Boo

Taking pictures of two boys is so hard, we are totally screwed when there are three. :) You can see Simon's bald patch behind his ear. One of four that the nurses shaved into his head for IV's. I'm sure they're great at their job, but they suck as beauticians. :)

Simon looks like a baby werewolf to me in this photo. Maybe it's the pointy ear and unruly hair. :) Dexter was being so sweet and cooperative. He finally just fell asleep while we maneuvered Simon.

How precious are these brothers? They were fussy after the photo shoot so I was rocking them. Dexter reached over and grabbed Simon's hand. I know it was coincidence, but it looked so purposeful. He held on for a really long time, too. (Please look away from the disheveled woman with her shirt on inside out. Nothing to see there...)

Not only was Linus's onsie WAY too big, he was not in a position to be messed with. I had big ideas of cutting the back out and splitting the sleeves to do a wrap around kinda thing. Negative. He was calm and on his side. Blanket onsie shot it is.

A bib his Cousin Bailey sent to him. Everytime I laid it gently on his chest he flung it off. Point taken. Set it next to him to snap the photo. :)

Friday, October 29, 2010

Guess Who's One Month Old Today?

See that hair? The cockatoo-do that kid on the right is
sporting? That's what I look like every morning. He is SO
lucky he has me around to give him some pointers.
Mousse, brush, dry, hair glue, pick... Sometimes repeat...

Dexter's Story

Poor Dexter has had his story on the back burner for so long due to his brother's rough time. I hope I can make it up to him. Here goes nothing.

Dexter Vaughn was our last born and our smallest baby boy. He made up for both circumstances by being the loudest and the most demanding. Small or not, you can NOT ignore Dexter. He also began doing nearly everything first. He was the first to wear clothes, the first to breastfeed the first to come home. He's been a rockstar. This is not to say that he hasn't had set backs. He most certainly has. The fact that he started out last, had roadblocks and still powered through to be the first is awesome. This kid is pure gold.

Dexter came out crying and didn't stop. He cried through stabilization, he cried on the walk to the observation room and kept crying until someone put a binky in his mouth. Then he sat around glaring at everyone like "Geez, took you long enough to get that." He actually put his hand up and held onto that binky for dear life. I thought it was a cute coincidence, it wasn't. He's been holding his binky on purpose ever since. He continued to glare and make disgusted faces at nearly everyone for the first several days. All I could think was "Man, this kid is gonna get slapped if he doesn't lose this habit." I know this from experience. :) The first time he glared at Trina she looked at me accusingly. "That's your face! You look at me just like that sometimes and I could just kill you!" See? This kid is gonna have trouble. Luckily for him he's added a few expressions. A lot of them actually. This kid has so many faces. I could just watch him react to the world all day every day.

Dexter has been alert from minute one. His brothers would be sleeping or cooing or doing other "baby type things" and he'd be looking around, quietly assessing things. It was like he was plotting. One of the nurses said it was "creepy" how much he acted like an older kid when in fact he wasn't even supposed to be born yet. I agreed. He looks at you like he knows something. Another thing he did that was so "un-preemie" was that he hated to be swaddled. He spread out all over the place. They'd put him in the middle of his bed in a ball and he'd end up to the one side with his leg kicked over the mattress. It was so cute. He was very preemie like when it came to stimulation, though. He hated being touched or moved or messed with in any way. A diaper change could send him over the edge. The only thing that would calm him down was that damn binky. He'd hold onto it like it was his only life line.

At birth he had trouble breathing and was put on oxygen. He graduated off of it by the next morning and I was thrilled. Then he started retracting while breathing. His chest would nearly collapse with each breath and you could see every detail of his rib cage as the skin and muscle sucked in. It was painful to watch. He was diagnosed with immature lungs and put back on oxygen. I was so worried. My tiniest baby was in trouble I felt so helpless. When I called to check on him a few hours later I found out about Linus. Dexter's weak lungs took second fiddle to Linus's failing heart. Poor guy. Dexter pushed on and was back off oxygen in no time.

After his breathing was under control, they started offering him milk by mouth instead of through his NG tube. He was taking all of his feeds by mouth within days. This kid is such an aggressive eater he was collapsing the nipples. Next his IV's came out then he was moved into an open crib. He passed every test they gave him. I was shocked when they doctors were talking about sending him home at under 2 weeks. He wasn't even back up to his birth weight. He left the hospital at 13 days old and exactly his birth weight of 4lbs10oz. Due to his previous breathing problems, he was sent home on an apnea monitor. I hate that damn thing. It is the bane of my existence.

He has been an absolute joy to have home. He still eats like every meal is his last and he's very attached to his binky. I love snuggling and kissing this boy. I think the 2 weeks of one on one attention may have spoiled him a bit. He could lay on your chest 24/7 and be happy. He's in for a rude awakening when his Grandma goes home and both his brothers are here. Poor kid. We won't tell him what he's in for. :)

Screaming at birth.

Hollering in observation.

The glare.

Getting comfy.
To get an idea of how small he is, look at the bandaid on his thigh. :)

Angelic face.

Sizing me up.

Retracted breathing. This was fairly mild compared to his worst.

Milk drunk smile.

Very concerned.

What's the plan, Mom?

Not impressed.

MY binky. No touchie.

He loves bath time...

Binkies make everything better.

This is just the sensor.
The actual monitor is bigger than my kid.

Homecoming: Take 2

Our boy Simon was finally released from the NICU. They told us he could come home 4 different times, but there was always something that popped up and held him back. First he started having spells of apnea (no breathing) and bradycardia (slow heart rate). He needed to have have no "A's" or "B's" for 5 days in order to come home. Then he failed his sleep apnea study. It showed that his oxygen levels went down during feeding. They were going to send him home with an oxygen tank to use during meal time. This seemed preposterous to me considering he is our only child who has never been on oxygen. Ever. Then a doctor decided it may be a feeding problem instead of a breathing problem since he had a history of that. They did a swallow study that showed he was actually aspirating a little bit with each swallow. No wonder his oxygen went down, he was drowning. They found that if they used a thickener in his bottle, he did much better. He's on 2 reflux meds, 1/2 reflux formula, 1/2 breast milk and now a thickener. He's a bit of a slow poke eater and he takes forever to burp so feeding time can be drawn out for what seems like hours. He just can't be rushed into anything. Our boy runs on island time. :)

Linus' Story Part 1

It seems like I'll never finish this story. There's something new everyday with this kid. Here's what I have so far. I'll keep trying to finish it...

Although Linus is Simon's identical, I don't think they look particularly alike. Maybe it's just a "mom thing". He cried at birth and had pretty good O2 sats for a while, but needed an oxygen hood before leaving the stabilization room and heading up to observation. He was pink and beautiful and wide eyed. He didn't seem quite as laid back as Simon, but didn't hold a candle to the fit Dexter was still throwing. He's my "happy medium" boy.

He did well on minimal intervention & was taken off oxygen less than 24 hours after birth. On my 2nd visit to the NICU, Sat morning, he was getting his first bath. It was my first glimpse at his temper. Such a cute tantrum and it stopped when the nurses were done cleaning him up. Later that day I was told he and Simon were doing so well that they planned on graduating them to isolettes. I was thrilled at his quick progress.

The next morning I called down to check up on my boys. Dexter's labored breathing had scared me a little the night before so I was worried about him in particular. Instead of patching me through to the nurse taking care of them, the neonatologist came on the line. She told me they were just trying to find our room number to call about "baby b" having issues. I thought she must have been confused and was talking about Dexter. She went on to say that he was in distress, he was grey, they had lost pulses in all 4 extremities and believed he had an aortic defect. She had to get off the phone suddenly because Linus was being wheeled past her right then. They were transferring him to NICU III and would call me back after an echocardiogram gave them a better idea of what we were dealing with. I was in shock. I'd seen the boys just a few hours ago as I took Trina's milk to the NICU after every pumping session. After an hour I called to check in on him, I couldn't remember if she gave me a time frame or not. I was told that they were still doing tests & they'd call me back.

It was time for me to take more milk to the NICU, but I was afraid if I left the room, they'd call. I waited as long as I could before going upstairs. I was only there for about 10min before I got a text from Trina reading "come to the room NOW". I ran out of there, down the hall and to the elevator. I paced and cursed at how long the damn thing took. When I walked into our room I didn't expect to see our pediatrician sitting there. Where was our neo? Trina was crying so I went to her. Dr H said that she'd been with Linus and they were 75% sure they had a diagnosis so she wanted to come talk to us before they summoned us to his bedside. It was believed he had congenital aortic stenosis. Since it is rare to see symptoms in infants, his case must be severe and he would most likely be transferred to Children's Hospital and need surgery to resolve it. How could this be?? I had JUST seen him. The last pictures I took of him showed his big bright eyes and fat cheeks. Surely there was a mistake. I didn't hear much else of what Dr H said. I remember bits and pieces of her telling us what a wonderful hospital Linus would be going to and to keep hope alive no matter what the odds were. She left and Trina was sobbing. She'd only seen Linus twice. Once for a minute in the OR and once in the NICU. I held my wife and tried to make sense of all of the information that was being thrown at us.

A few minutes later our room phone rang. It was our neo, she wanted to talk to us at Linus's bedside. We loaded Trina up in a wheelchair and headed out. NICU III is so much brighter, busier and scarier than NICU II. Dr F explained that Linus had critical aortic stenosis. His aortic valve was completely obstructed and the only way oxygenated blood can leave his heart is by way of the PDA, which had closed as it was supposed to. This caused him to go into cardiac crisis. They had started him on meds to trick his DA into opening again and had also put him on a ventilator. I was assured he was very sick but looked much better than he had. When I saw him I was in shock. THIS was better? He didn't even look like my baby. His skin was a mottled waxy hue and he was so still. I broke down and cried and touched him as gently as I could. Dr F said the transfer team was on there way. They go there quickly and began the long process on moving him from his bed into the transfer isolette. Trina and I watched them prepare him for the move with tears running down our faces. One of the flight nurses that was transferring him gave me his floor and bed number so I could meet them over there. And then he was gone.

I took Trina to be with our other two boys in the NICU and made arrangements for my sister to come stay with her. By the time I had thrown a few things into a bag for myself, my mom and younger sister arrived. They drove me the short mile to the other hospital. By the ime I made it up to his floor I was almost running. I had to slow down and breathe. I knew freaking out wouldn't help him. There were so many people crowded around his bed, doctors nurses surgeons tech, respiratory therapists. Some of them introduced themselves, some ignored me. I felt like a deer in headlights. A nurse took me aside and started asking me basic question. What's his name, birthday, birth weight, your name, your relationship to him, your social security number. It was grounding to have so many answers when I felt like I knew nothing.

A doctor came to talk to me, but treated me like an idiot. "Your son has a sick heart and it needs a little help" If I hadn't been so shell shocked I would have been really offended. I think I said something like "How long can you keep the PDA open?" He hemmed and hawed. Said something about how it couldn't be kept open indefinitely. I was done listening to him. I walked away.

Another doctor came up and introduced himself. He explained that Linus needed a balloon catheter procedure to open up his aortic valve. Eventually he would need open heart reconstruction, but no one was comfortable doing that at this point. He was too small and too sick to survive such an invasive procedure. They were hoping this catheter deal would buy them the time they needed to be able to do more later. He made it clear there was a very good possibility that he wouldn't make it through this procedure either but that it was their only option. He asked if I would sign consent and I told him I would. A few minutes later he came back saying that although Linus was a critical case, he was relatively stable for the moment. He wanted to wait until morning to do the catheter because there was no ECMO team available until then. He didn't foresee needing them, but also didn't feel comfortable not having them there in the Cath Lab. They would monitor all night and only go in if there was an emergency, otherwise they'd do it in the morning. I said ok and called Trina to tell her about the change in plans. As I hung up, he reappeared and said, we have to go in now, his blood gases just came back and they're bad. I had emotional whiplash. I said "But you said you needed ECMO and that they'd be here in the morning" He replied "Your son won't make it until morning." They started preparing him immediately. I was terrified...

Coming into this world.

Under the oxygen hood in observation.

Last time I saw him "healthy".

Right after his 1st surgery.

Day after his procedure, with his eyes swollen shut.

All of the gear keeping my boy alive.

Crying at Linus's bedside. A daily occurrence for me.

Tanning. I think those are Gucci sunglasses.

Sweet babyface.

Wednesday, October 20, 2010


The difficulty rating in our life is getting ridiculously out of hand. The little black cloud that has followed me around for as long as I can remember has grown into a huge, all encompassing supercell thunderstorm. If I listed all of the hardships we've faced in the past few years in bullet points, I'd probably slit my wrists. Dare I ask "What else?"

Monday morning I was woken up by the sound of Trina retching. Still half asleep, I asked "What's wrong? Are you ok?" Between heaves she seemed pretty irritated that I'd ask such dumb questions. In my defense I was really groggy. Of course she wasn't ok. She had sharp stomach pains and was vomiting over and over. Reminded me of why we went to the hospital before we had the babies. We got ahold of the on call doctor at our peri's office who said she needed to be seem immediately. Great, a trip to the ER. I offered to drive her and drop her off since there was no way Dexter was going to go anywhere near the bevy of sick people that would be in the waiting room. She declined and drove herself to the hospital while sleep deprived, violently ill and in pain. I felt so helpless. I had one baby at home with me, one at the hospital he was born at, one at the hospital he was transferred to for heart surgery and now my wife was in yet a third hospital. Really universe? Really?? At the hospital they started an IV, ran blood work and gave Trina meds for pain and nausea. A ct scan of her abdomen and pelvis showed very angry intestines. The sent her off with a diagnosis of colitis, another handful of prescriptions and put her on a liquid diet. To add insult to injury they told her to pump and dump for 24hrs due to the ct contrast still in her system. Trina's barely keeping up with the boys' milk needs so watching that precious liquid go down the drain is physically painful.

Fast forward to the next day (yesterday) as I was at Linus's bedside. The nurse and I were repositioning him in his bed which takes lots of time and two people due to all of his wires, lines, tubes and leads. I felt my phone vibrate in my pocket, but ignored it. A few minutes later the CVICU clerk came in and said I had a call. Me?? Cold dread hit me. Only an emergency would have someone track me down there. Trina's voice was frantic. "Baby there's a snake in the house and two of the dogs are hurt. I don't know what to do!" It took a second to register. I was expecting news about one of my boys or my wife, but a snake? Never saw that one coming. "Don't do anything! I'll be right there. Stay away from it." "I can't let go and Dexter's crying" My mind reeled "What?? What do you mean you can't let go??" "I have it pinned by the neck with the pooper scooper. I'm so scared" I was in shock. My wife had ahold of a poisonous snake while my infant son cried and two of my dogs were bitten and in unknown shape. "Don't move, you'll be fine, I'll be right there" I was an hour away and less than a nano second away from freaking the fuck out. In the calmest voice I've ever used I told her "I'm going to hang up, but I'll call you right back. Don't move" I called my sister who lives about 20 minutes form us and told her that a snake was in the house and 2 of my dogs were hurt and to go to my house NOW. I called Trina right back and talked to her until my brother in law got to her. I broke every speed limit on the way home.

When I got there, Antone was in the driveway with a headless juvenile cotton mouth. Trina was on the couch holding Dexter, rocking him gently. She was white as a sheet and shaking. She's not just scared of snakes, she's down right phobic. I can not believe she pinned that thing. I would have taken her for the run- screaming-from-the-house-with-or-without-the-baby kinda gal. I could not be more proud of her and her protective mama instincts. Makes me tear up thinking about the terror she was feeling until help arrived. Thank god Antone got there so fast.

After a quick check on the dogs to make sure they weren't in critical condition, I packed her and Dexter up in the car with some essentials and took them to the nearest hotel. Yes, the snake was dead and logic would tell you that the odds of there being another snake were slim to none, but logic doesn't count on nights like that. I couldn't leave her there alone with the baby again. The best money is spent on peace of mind. I knew she'd never sleep in our house last night and she'd been through enough. Better to face it in the light of day.

After dropping them off, I went back for my dogs. The normally thin faced, tight lipped pooches looked like baby shar peis, but with less cuteness and more bloody drool. I headed out to the emergency vet clinic with them for treatment. Several hours and several hundred dollars later the dogs were back home and I met my wife and child at the hotel for a few hours shut eye. And here I thought the hard part was going to be having three precious babies home at once. Never in my wildest nightmares did I dream up any of this.

Once again, I AM still writing Linus and Dexter's stories. Life just keeps interrupting my creative thought processes, among other things, like my sanity...

Friday, October 15, 2010

Simon's Story

Simon was our first born and our biggest at 4lbs13oz. In utero, he was Baby B, but as he was laying on top of Linus, he got to come out first. Simon did great from the minute he came out. Nice big cry and never needed any oxygen. He got his first bath within an hour of birth. He was also the first to graduate out of a heated bed and into an isolette.

When he started on his feeds first and the nurse told us he'd have his IV out soon, I thought he'd just fly out of the NICU. Then his reflux started. It was heartbreaking to se him cry, "chew" and arch his back. They started mixing his breastmilk with AR formula and making sure he stayed upright for a few minutes after feeds. This helped some but he started not wanting to eat. An NG tube was placed and half of his feeds were just put down the tube. After adding Zan.tac, he really started improving. They'd offer him 5 out of 8 feeds orally and put anything he didn't finish down the tube. They figured out that if they gave him 3 of the oral feedings at night, he did better. Apparently we have a night owl. He's now up to 6 of 8 feeds by mouth and doing pretty well.

A few days after birth, his right eye started looking puffy. Within a day it was swollen shut and had green goo. The doctor thought it was probably just a blocked tear duct, but started him on an antibiotic ointment when it didn't clear up with warm compresses and massage.

About a week ago he started having sleep apnea and bradycardia. Basically he'd forget to breath and keep his heart rate up when he was sleeping. As he would roust himself out of it, they just started tracking his episodes. If they kept coming, he would have started taking caffeine, but they've slacked off. I'm sure he'll come home on an apnea monitor to make sure he does well out of a hospital environment. Over the last few days they've been lowering his isolette temperature preparing to transfer him into an open air crib. As of today he's within a few tenths of an ounce from his birth weight. I have a feeling he'll be home next week. :)

Coming into the world.

Meeting his Mommy.

Holding his Mama's hand in observation.

Contemplating kicking that nurse's butt who gave him a bath.

Thinking about how wrong he was about that nice nurse who fixed his hair.


His first big boy outfit.

Looking like Rocky with his swollen eye.

Pitiful face. At least the eye looks better.

Kangaroo time with my beautiful wife.

Showin some love.

First time in Mama's arms
Swimming in preemie clothes.

Thursday, October 14, 2010

Homecoming: Take One

Dexter is home! All 4lbs & 10oz of him. :) He may be tiny but boy is he alert! With the way this boy eats, he won't be small for long.

Simon will be home in no time. He just needs to pick up some stamina on his feeds. He's a little too laid back for his own good.

Linus scared us to death yesterday. He decided to take out his ventilator tube. They let him try to breath on his own, but he only lasted 30 minutes before they had to put it back in. He was completely warn out and his hemoglobin had been trending down all day so they had to give him a blood transfusion to keep his oxygen saturation up. That was his 3rd one. Today he was much better. He was well behaved and his color was great thanks to a lovely blood donor. This kid's gonna give me ulcers...

I am writing a birth & life story for each of the boys. It's just taking forever since I'm never on the computer these days. Running between home and two hospitals every day leaves little time for anything else.