Surgery Reprieve & Serious Gall

We went in on Friday for WeeMan's echo and to possibly talk to the cardiologist again about surgery. Trina's mom is in town so we both got to go to the appointment. When the tech came to take us back I thought "Hmmm, she looks familiar". This would not be surprising considering how long he spent in the hospital and how many people have worked on him. She seemed a little snippy, but I didn't think too much of it. Not everyone has my winning personality. :) As she was starting the echo we had a very, um, interesting conversation.

Her: "Hey little guy, remember me? I've done several of his echos, in fact I think I did his first one"

Me: "Oh yeah? He was SO small back then. Can you believe how big he's gotten" *beaming with pride*

Her: "Yeah, he WAS small. You have two others right?" *watching the screen and wanding his chest*

Me: "We sure do. He's got two brothers at home with their grandma right now"

Her: "I couldn't believe he was all by himself a few times when I went up to CVICU. I thought to myself 'Man I can't believe this little guy doesn't have any family. He's so cute.' I asked the nurse if he was a CPS case because I wanted to take him home."

Me: *jaw literally hanging open*

Her: "The nurse said she didn't think his mommies would appreciate that and told me he was a triplet so that why you weren't with him all the time." *still looking at the screen*

Me: *shocked silence*

Her: "One of his brothers was still at the other hospital then, is he home now?"

Me: "Uh, um, yeah. They only spent 2 and 3 weeks in the hospital. It was really rough in the beginning when we had them in separate hospitals, then we had one here, one at Woman's and one at home. Not to mention Trina had complications that landed her back in the hospital. We were certainly spread a little thin. *thinking "Why am I explaining myself to this woman???"*

Her: "I just felt so bad for him being all alone. We have so many CPS cases come through here. I'd just take them all home with me if I could. It's so sad when they don't have anyone who cares about them"

Me: "Uh, yeah" *looking at Trina in disbelief*

Her: "OK, I think I have some good shots. let me go show them to the doctor to see if he wants any more" *walks out*

Trina: "Wow, she just couldn't let that go could she."

Me: "Nope, she made it pretty clear what terrible, neglectful parents we are..."

She popped back in to let us know that Dr HD was happy with the images and we could dress Linus. I was stunned at her complete and utter lack of tact. We spent as much time as possible with each of our boys. I will admit that Linus probably got the least of my time, but in my defense, he was the only one who was sedated and on a strict no stimulation order. I had to make a choice on where I was and the 2 conscious babies who needed to be held and touched and soothed usually got top billing. There was nothing I could do for Linus as a parent. I couldn't touch him or hold him or feed him. When I kissed him or talked to him he would sometimes stir and get upset causing him to need even more sedation. I visited him every single day for 2-3 hours. It's all the time I had. Even as I type this I remember feeling so helpless and useless back then. I was the walking dead running on caffeine, shock and fear. My family was spread across town and I felt inadequate. Looking back and using logic, I know we truly did the best we could for our boys, but the spark of guilt remains. Luckily for me I had someone so skillfully stoke it back to full fire if even for a short while.

After a few minutes our Dr's nurse came in to talk to us. He was scrubbing in so he couldn't come himself. Apparently he was very happy with something he saw in the images. he decided that it was worth doing one more catheter procedure before moving on to open heart surgery. They scheduled him for first thing Wed morning. We were both shocked and cautiously happy about the news. Of course we're still worried about how he'll react to another catheter since he always has complications, but it's SO much better than him going in for open heart. I really really hope this balloon lasts him long enough to let him grow big and strong before more aggressive measures need to be taken. After 6 months of age, the risk goes down significantly on valve replacement. That goal is in sight for our little fighter.

Oh yeah, the picture at the top of this post is my son gazing up at Food Bag. I told you he loves that damn thing. His Grandma says he's like a little duck that imprinted on something that wasn't his real mama. :)

Broken Hearted

Last week all three boys were tired and fussy after their pediatrician's appointment on Thurs. I attributed this to not only the vaccines, but to the very long day out of the house. My boys live in a fairly strict quarantine so they never leave the house and very very few people come over. This is not only due to them being preemies born in flu season, but also because of our fragile little Linus. He can NOT get sick. Not even a sniffle. Needless to say, 8hrs out of the house took them well past their limit.

Friday Linus still wasn't acting like himself. He was super needy and sleeping nonstop as long as he was being held. He was barely taking an ounce by mouth at each feeding. I wasn't positive, but I was pretty sure his retractions were worse. Saturday morning his breathing was definitely worse and he seemed a little pale. While I was at work, Trina emailed our cardiologist who is awesome about replying no matter what time of day. He even wrote us when he was on his holiday vacation. When she explained his symptoms (breathing hard, pale, not eating well, coughing occasionally) he said he would be on shift the next morning, but that Linus was too little and too fragile to wait and that we should take him in. We decided that we'd take him to the ER after I got off work. When I got home. Linus actually looked a little better. We waffled on whether we should take him in or if he could wait til his cardiology appointment on Tues. We decided to wait and that if he seemed worse again, we'd take him then.

A few hours later it was bath time for the boys. I bathed Dexter and he didn't hate it, pretty good for him. Then I bathed Linus and noticed he looked mottled. Then I noticed his fingernail beds were a bit blue. And his toes... Dang, change of plans, again. He needed to be seen now. I finished up his bath while Trina started getting things together for the two of them. Poor Simon, who loves the bath the most, had his cut short so we could get Linus ready for an outing that would most likely end with being admitted to the hospital.

At 5am, I was woken up by Trina coming into our bedroom. I was shocked to see her. I just KNEW they'd keep Linus. I asked how the visit went and she told me she didn't want to talk about it because she was mad and exhausted. Uh, ok. I dropped it, because I know what's good for me. Later she told me how furious she was and what a complete waste of time the whole trip had been. When she got there she had to wait forever, then they took an xray and a sputum sample. After waiting a ridiculously long time, she asked what the hold up was. The nurse told her that his oxygen sats looked good, his lungs were lungs were clear and that his heart didn't look any more enlarged than in his last xray so as long as the RSV test came back negative, they'd send them on their way. Huh??? What about an echo to evaluate his heart function or a CBC to determine if he needs another blood transfusion or a blood gas to tell us how hard his body is working to stay satted? Nope. They just wanted to see if he had a cold and to send him on his way. Trina was beyond mad at this point. When the cardiologist on duty came to talk to her he was dismissive of her concerns. He did not care that Linus had all the symptoms of unregulated heart failure nor that he was maxed out on his meds. He could've cared less that we were told at discharge less than 2 weeks ago that if Linus had ANY new or worsening symptoms to bring him back immediately. When Trina told him Linus was breathing to hard to eat by mouth without choking, his response was to stop feeding him orally, to put it all down the tube. Nice. Obviously these people were going to be no help at all, so she left. 6 hours worth of wasted time and energy.

Sunday and Monday he did ok. Not great, but not in crisis. We would offer him a small amount of food by mouth at each feed. Sometimes he'd get a a quarter or half ounce down, sometimes nothing. The rest went through his NG tube. He slept most of the time, breathed a little easier and we didn't see any more color changes. Tues he went to see his cardiologist who was less than happy to hear about his ER visit. When Trina told him about the doctor's advice on not feeding him orally if he couldn't handle it, he said "That's not exactly a solution now is it?" Ya think?

Unfortunately Dr.HD is not happy with Linus's continued downward slide. He doesn't think doing another balloon catheter would buy us enough time to make it worth it. The first one only lasted 3 weeks and the second one lasted about 8 weeks. These are not the long term results one hopes for with this procedure. He's going to talk to the surgeons about the possibility of repairing his aortic and mitral valves instead of replacing them. They might even be able to only replace the aortic and hopefully repair the mitral. Worst case would be replacing them both. Replacing a mitral valve on a baby under 6 months is very dangerous. They'd have to use a mechanical valve and he'd be on blood thinners for life. Not to mention that he would outgrow anything they transplanted at this point. This would require more surgeries and more transplants down the road. It's a nasty roller coaster you can't get off.

We go back on Friday to have the surgical consult and to have an echo. Linus should have had one on Tues, but someone overlooked the fact that he wasn't on the schedule. My poor kid falls through all sorts of cracks. Until then we're just keeping him as calm and comfortable as possible.

3 Months Old and Huge!

I can't believe how fast my babies are growing up. It seems like they're older and bigger and smarter every single day. Today they had their 3 month check up complete with vaccines. It's amazing how much time it takes to do anything with 3 babies. We had their pedi appointment, took the rail to Children's to refill Linus's meds, grabbed a bite to eat, took the rail back and it was nearly 8 freaking hours before we stepped foot in our house again!

Simon weighs 12lbs9oz which puts him in the 25th percentile for his age. He smiles the most and has the best laugh I've ever heard. He coos and babbles and will even repeat you if you use his sounds. He is the best snuggler and just makes my heart melt when he hugs my neck. Simon is also our little water boy. He has so much fun kicking, floating and waving his arms in the bath. Simon has gone from being our "laid back guy" to our "hot and cold boy". He's the quickest to throw a fit but also the fastest to smile. Sometimes his face is still red and streaked with tears when he's laughing again. He'd going to keep me on my toes, I'm sure of it.

Linus is 10lbs11oz and is not quite on the charts yet. He's doing pretty well at home on his meds and feeding tube and will see his cardiologist on Tues 1-11-11. He's definitely our most independent little guy but is smiling more and more and has even laughed a few times. He's also started cooing and working his mouth. Linus's favorite past time is to look loving at his "food bag" and talk and smile and laugh. It sits on an IV pole next to his favorite swing along with his enteral feeding pump. You'd think this very dull peice of medical equipment was a damn puppy the way he reacts to it. I swear to you he's never looked at me with half the love in his eyes. If I was the jealous type, he'd be in big trouble. Luckily for him I've chosen to find it hilarious.

Dexter is a whopping 12lbs13oz and in the 35th percentile. Our big boy is so attentive. He can sit quietly and study a toy forever. Dexter mostly hates bath time and seems scared we'll drop him the whole time. How did someone so young become so untrusting? If it were Linus, I'd say he has a good reason to be wary, but Dex? Nope. His biggest claim to fame is that he knows how to fake cry. This kid will scrunch up his face and say "waaa waaa hmmmmmm" then open his eyes and look around like "Did it work? Is someone coming?" SO freaking funny. Cracks me up every time. Unfortunately laughter is not what he's going for so it's mostly backfired for him. :) When he's tired he wants to be held and will rub his face back and forth across your chest and shoulder. Such a sweetie pie, this one.

A Birthday and a Homecoming

My best friend, the love of my life, turned 32 today. She's the most amazing wife & mother. My boys & I are so lucky she's ours. :)

Linus's echo on Tues showed a slight amount of improvement. This is not amazing news since they've now quadrupled his Capt0pril dose in the last 9 days. I was sort of hoping there'd be more than "slight differences" on screen. However, since it wasn't worse, they said we could wait to see our regular cardiologist so he can create a new action plan. Upon hearing this news, Trina and I decided that we should bring Linus home. Trina has been living at the hospital and caring for him full time. She was feeding, changing, bathing & medicating him. Why not do that at home? He was no longer wearing EKG leads, just a pulse oximeter and an NG tube. We talked to the cardiologist about it and he said they could teach Trina how to run the feeding pump and how to drop a new NG tube in case he pulled his out. She's a quick study and had everything down pat in no time. They gathered all of the meds and equipment he needed and she brought him home this afternoon.

It's so amazing to have everyone under one roof again. We're still trying to find our stride and get a good pattern down for feeding and caring for all three boys simultaneously. Especially since I'll go back to work tomorrow and Trina will be flying solo against the trio. Having only two of the boys home has been like a vacation as far as the work load. "Twins" are so easy! Two babies? No problem, I have two arms. I can feed, hold, pat, burp or rock two babies with ease. Three babies? Um...two arms...damn. Add in Linus's new "gear" and it can get a little hairy. Never fear, though. Trina is amazing and will have us back on track in no time.

Supermom feeding all three boys before Linus's hospital trip.

First Christmas & Linus Update

Well, the boys' first Christmas didn't exactly go like I thought it would. I was picturing more joy and merriment and a little less worry and loneliness. My mom and I were at home with The Big Boys. We opened a few gifts sent by family next to a 2ft tabletop tree. Simon and Dexter slept through half of it. I made my regular Christmas fare in much smaller portions, but somehow it didn't taste quite right. Then I burnt the sweet potatoes and nearly cried. It certainly didn't feel like Christmas to me. Trina was at the hospital with WeeMan. She's been staying with him since Friday while I've been off work and able to watch his brothers full time. I hate that, once again, our family is split up.

Going back to work tomorrow is going to kill me. Holding and cuddling and caring for my sons is the only thing keeping me sane and grounded right now. Without them, I'm afraid I'll crumble. After work I'll drive to the hospital to see my wife, hold my little man and pick up breast milk for his brothers.

As for Linus, he's proving to be a troublesome patient. They've more than doubled his meds with no major improvement. His lungs are more clear, but his echo was still bad, he still breathes too rapidly, has retractions and is much too tired to eat a full bottle. He usually gets about half down before needing the rest put down his NG tube. He's blown or clotted 3 IV's now and is currently awaiting the Kangaroo Crew to come put in his 4th. He's scheduled for another echo on Tues. If it's very bad, he'll have his 4th heart catheter procedure on Wed. If they think he can wait a week, his regular surgeon will be back from holiday and will do it then. The hope is after they stretch his aortic valve, again, there will be less pressure in his left ventricle and his mitral valve won't leak as much. If the leakage is still in the "severe" range they'll be forced to do open heart surgery to repair it. This scares me half to death. I know open heart surgery is in his future, we're told it's unavoidable, but I'm just not ready. Will I ever be? I seriously doubt it...

Simon & Dexter opening presents from their cousin, Bailey.

Don't they look excited? :)

Poor Linus spent his Christmas on the cardiac floor of The Children's Hospital. At least he had his mommy with him.

Happy Holidays!!!

Dammit: Updated

Linus had been doing very well since coming home from the hospital. He's been growing like a weed, starting to smile, pooping like a champ and acting like a "normal baby" in general. Then last week we started noticing the warning signs they told us to watch for when he was discharged. They were subtle and mostly revolved around his feeding. He slowed down on his eating, then began leaving more unfinished bottles than finished ones. As the days went by, his symptoms got worse and I got more worried. I kept thinking, thank god we begged for a cardiology appointment even when we believed we may be making mountains out of mole hills. He started choking more often due to rapid breathing while eating. Then 2 nights ago he looked distinctly grey after throwing a temper tantrum. Last night he started having retractions. All signs pointed to his congestive heart failure worsening. These were the exact signs that had him in his second catheter surgery. I've been trying very hard to tell myself that he'll be fine and that he probably just needs his meds tweaked. Sounds logical since he grew from 5lbs14oz to 8lbs8oz since his last dosing audit.

I took the day off of work to watch Simon and Dexter so Trina could take Linus to his appointment with Dr. HappyDance. I've been anxiously awaiting and equally dreading his findings. I just got the call from Trina a little while ago. Linus's echo looks worse than before and his xray showed that his lungs are wet. They're admitting him for observation while they increase his meds. Hopefully they can get his congestive heart failure back under control without sending him back into surgery...

Update: Just heard from Trina again. Apparently Dr HD said he was "very disappointed" with Linus's echo results. His aortic valve seems a little more narrow than after his last catheter and his mitral valve is leaking like a sieve. HD is going to talk to his team about different courses of action. These include higher medication doses, maybe another balloon catheter to stretch his aortic valve and possibly open heart surgery to repair the mitral valve. For the moment, Linus had an IV put in for general fluid and medication maintenance and an NG tube placed so he doesn't have to work so hard eating. I can't believe my baby isn't home anymore. :(