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.

Seriously???

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...

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.

Preciousness.

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.

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.

Trina's Story

Wednesday Trina started having very sharp pains in her abdomen that came every 3 minutes. They only lasted 5-10 seconds, but they were excruciating. She called her "contraction monitor nurse" who told her to do another hour on the monitor. Nothing registered so it was chalked up to "baby movement". After the monitoring, Trina started getting nauseous and the pains kept coming. She called the nurse back who, in turn, called the doctor. They told her she wasn't in preterm labor since no contractions were registering, but that if she felt the need to get checked, to do it. At some point during the day, one or two calls were made to our peri's office as well. Basically everyone just told her that at 34+ weeks pregnant with triplets, these misery inducing symptoms were long overdue. She could either stay home and ride them out until the c-section on Friday or come in and get checked and possibly prescribed something to ease the pain & nausea. At 9 o'clock that night Trina started vomiting. We decided, preterm labor or not, it was time to go to the hospital.

Trina wouldn't let me take the time to pack up her 7 thousand pillows or her comfy pants or a few other odds and ends that I wanted to grab. As far as she was concerned, we were going to go down there, get checked out and come home. The fact that the nurses seemed so nonchalant about her ordeal made her doubt the validity of her concerns. She vomited 3-5 times within the first 30 minutes she was there. I could not have been less surprised when the nurse told her there was no way she was leaving at 34+ weeks gestation with triplets and a scheduled c-section less that 48 hours away. They did a non stress test on the boys, or at least tried to. As always, Linus refused to cooperate for them. They also did a contraction strip that showed nil. These tests lasted longer than they should have since Trina kept having to sit up and vomit. They finally got done, ran some blood and placed an IV. They gave her fluids, Z0fran & Amb1an to help ease all her woes.

Our peri came by the room first thing the next morning to tell us that although the blood, NST & contraction monitors were all clear, she had no problem doing the c-section a day early to ease Trina's misery. Trina declined saying that she could ride out the 36 hours of pain to make it to the boys' scheduled OR time. During that time the nurses did 2 more fetal monitoring sessions. Linus showed up for neither. Apparently he was low in Trina's pelvis and completely underneath Simon. They basically just checked to see if he was still alive & left it at that. During the 2nd one, they had to go track down a doppler to find him with. What a stinker he was being.

Trina did her best to sleep through the last day and a half of her pregnancy. If she was awake, she felt every stabbing pain and wave of nausea. Sleeping, she could miss all but the worst of it. It seemed like nurses were popping in every few hours through the day and night, so sleeping for more than 2 hours at a time was difficult.

When it came time to get ready for the c-section, it didn't seem real. I got into some scrubs and we loaded Trina into a wheelchair. As we got to the door where Trina and I had to part ways for a bit, she started crying. It broke my heart that I couldn't go with her because I knew she was scared. The thought of getting an epidural, then a c-section was terrifying to her. I paced in my little waiting room for the full 30 minutes before someone came back to get me.

The OR was buzzing with activity. Trina was doing ok, but was very nauseous. The anesthesiologist was a personable guy who told me he'd let me know when to stand up to see the action. Trina kept retching so I was focused on taking care of her. The anesthesiologist took my camera so I'd have some shots of the boys popping out. Everything was a blur. Even though I did stand up once they starting coming out, I have only flashes of memory. They each cried and it was such a relief. I was shocked to see how blue they all were as they were whisked by.

After they were all out, I could tell there was a sense of urgency in the room. Apparently Trina's uterus would not tone back up and she was bleeding out. The doctors were working so hard on her that she was literally lifted off the table at the waist a few times. From what I could gather, the anesthesiologist topped out two medications and was starting a third. Trina started getting woozy and a nurse took me out of the room. I was told before hand that they would make me leave if there was a problem, so I was really worried.

The nurse took me to a stabilization room where Simon and Linus were being worked on. I was able to snap a few pictures in the midst of all of the fray. Someone asked if I'd seen Dexter yet and took me to him when I said no. He was in another room with his own team. Boy was he angry! :) I snapped a few pics of him, too. Then it was time for Trina to meet the boys. Simon was doing very well so he was handed to Trina so she could put him on her chest. She only held him for a moment then started feeling dizzy. The doctors were still working on her, but I figured if they let me back in, things must not be too bad. Both Linus and Dexter were wheeled in in isolettes so Trina could barely see or touch them. I followed the boys upstairs to NICU observation while the doctors finished up.

When I came back to stay with Trina in the recovery room, I was shocked to see that her lips and hands were blue. She was shaking violently and was terribly nauseous. It broke my heart, but I didn't show her how worried I was. I just told her how good the boys were doing and let her rest. She was so thirsty and her mouth was dry, but she wasn't allowed any water. The nurse finally brought her some ice chips and told me to give her only one every few minutes. She slowly stopped shaking and the color started returning to her face and hands. She still felt cold to the touch, though. Trina's always warmer than me so this is totally out of the ordinary. A few hours later they took her to a room. She was starting to look better, but couldn't keep her eyes open. When she did come to, she told me to go be with the boys. I was torn. There was no way to be in 4 places at once. Who's bed side did I stand by? I followed Trina's wishes and went to the boys. Luckily their beds were lined up so I just bounced back and forth between the three trying to stay out of the nurses' way. To my surprise, the first thing Trina did when coming to was pump. I spent our whole hospital stay running milk up to the NICU every few hours. She's amazing!

The next morning Trina was dying to see the boys, but the nurses told her she wasn't well enough, she'd lost too much blood. I'd already taken 200 pictures and shown her, but it's not the same as seeing them in person. Finally at 17hours after their birth Trina put her foot down and told the nurse to bring a wheelchair. She was going to see her sons dammit! As the nurses got her up and helped her to the restroom, Trina promptly started losing consciousness. This did not bode well for a speedy NICU visit. They got her back to bed and told her to rest. She was heartbroken, but had no recourse. Four hours later she felt ready to try again. This was a winner. 21 long hours after their birth. Trina finally got to see her baby boys. She was only able to stay upright for about 30 minutes before getting dizzy again, but it was beautiful and tear inducing to say the least.

Over the next 6 days, Trina had a bevy of complications that lengthened her hospital stay. It semed that every day they'd say, if we can get *enter issue here* under control, you can go home tomorrow. Unfortunately there was always something to take that problem's place. She was crazy anemic due to the blood loss during the c-section. She popped a fever twice. Once after the surgery due to meds given to stop her bleeding and once for an hour the night her milk came in. Her blood pressure was higher than it ever was during her pregnancy. She swelled up like the Stay Puft marshmallow man requiring several days of Las1x. Due to the stress and antibiotics, she had a yeast outbreak in several uncomfortable places. Finally at 10pm on the 6th day post op, She was released from the hospital. I immediately drove her to The Children's Hospital to see our Linus. It'd been 4 days since she laid eyes on him. :(

Since her discharge, Trina has done marvelously. She's pumping almost enough to keep up with all 3 boys' milk needs. She's in very little pain other than when she coughs, sneezes, etc without warning. She's been walking a lot and wears a belly brace to help with any discomfort. I can't believe how strong she is and how quickly she's healed. These boys are SO lucky to have her as a mom.

Now for the part you really wanted. Pictures!

34Week Belly, 49", +57lbs

35Week Belly, 42", +19lbs

AKA

-1 Week Belly, 42", -38lbs

Notice how there are only 2 blue sensors? That's because they gave up on finding and keeping Linus on one.

Trying to sleep away the discomfort.

Our last picture as a 2 person family.

My awesome OR outfit. Stylish, no?

Trina holding Simon.

Trina touching Linus.

Trina seeing Dexter.

Taking Trina to the NICU for the first time.

Holding Simon

Holding hands with Linus.

Lookin at Dexter's precious punam.

The Boys Are Here!!!

I am proud to announce the arrival of our three sons. They waited until their scheduled c-section on Fri, Oct 1 to make their big debut.

Simon Keats 7:07pm 4lbs 13oz

Linus Grey 7:07pm 4lbs 12oz

Dexter Vaughn 7:08pm 4lbs 10oz

I'll try for a birth story later, but here are a few details to tide you over. The first 24 hours were magical. Simon is cool as a cucumber, Dexter is a fireball of strong opinions and Linus is a happy medium between the two. They are perfect in every way. Well, almost... As most of you know, when he was around 36 hours old, Linus was rushed to Texas Children's Hospital in cardiac crisis. He was diagnosed with critical aortic stenosis and was in surgery less than 3 hours later. It has been a hard week for our little family. We still have a very long road ahead, but things are getting better. Thank you all for your thoughts, prayers and good vibrations. We need them all.