November 30, 2013 Part 1; Joy

Aly is going to write a more detailed account of November 30th but I wanted to share with people something very important that Dr Marvelous does a good job of regularly reminding us about: Charlie and Henry are a source of joy. Sometimes, we can get caught up in the fear or in the sadness and we should always try and remember the joy. 

Today was a beautiful day of joy with our boys. 

(D)

November 29th, 2013. I Kind of Want to Punch Today in the Face

Today was tough. It was one of those days where we woke up already knowing the new challenges we would be confronted with, we just weren't sure how serious they would be. 

Let's start with young Henry. When we got to the hospital he looked pale and like he was hurting. This wasn't a huge surprise because, as we were told last night night, his infection cultures had come back positive and the kiddo is fighting some pretty wicked bacterias. The Infectious Disease doctor came in to meet with us and told us that Henry's PICC line had to come out. To make up for having his PICC removed he had to have two additional IV lines put in.  This is not easy on such a small baby and we are hoping they hold until it's safe to put in another PICC. They ordered an echo of his heart because there was a concern the infection had begun to colonize in and around his heart.  The echo came back clear of infection but showed that the hole in his valve has gotten bigger. The heart valve issue is just going to have to get in line because at this point we have bigger fish to fry on little Henry.  The plan is to keep him on antibiotics and keep culturing and hoping the infection clears up. I won't even go into what happens if it continues. We'll cross that bridge if we come to it.  Surgery came by to check on the drain that had been placed to see how it was draining and how Henry's tummy looked. The surgeons were happy with how everything looked and have begun slowly inching the drain out. This process will continue over a period of days as they watch how he reacts to it.  Henry rested pretty comfortably the rest of the day. He had a kick ass nurse today who was a total tiger when it came to his care. 

Charlie, Charlie, Charlie. On the plus side, he's now opened both eyes! On the other side this wee brave heart had a real bitch of a day. It started out well enough. He looked good and nobody was overly worried about his vitals, labs or presentation. The morning was all about Henry and Charlie was just resting and doing his thing. David and I went downstairs for lunch and came back to find Charlie in the middle of his assessment. The boys get assessed every 4 hours so it's totally normal to see this going on. An assessment is where the nurses change them, take temps, blood pressure, turn them, readjust tubes as needed. It's all totally part of the day. I was holding his hand and talking to him during part of the assessment and then went to sit down and just watched. I could see his nurse starting to get a worried kind of hurried way about her and, not unusually, his alarms were sounding. Their alarms sound all the time because of various reasons so, at this point, they don't worry us most of the time. This time was different.  Charlie's nurse was adjusting him and messing with his breathing tube and I could tell she wasn't happy with what she was seeing. She started texting on her phone for some backup right as the Respiratory Therapist came in and immediately got to work. This guy is usually very calm but this time he was moving with purpose around the room and then I saw it. He pulled the bag out and started bagging Charlie.  After two weeks in the NICU I knew what this meant, Charlie wasn't getting oxygen from his tube and they were having to breathe for him. At this point, the nurse calmly but quickly explained she was hitting a button on the wall to tell everyone to come into the room immediately because Charlie was in distress.  She pushed the button and within seconds people were breathlessly running into the room and the race to re-intubate him began. Oftentimes, little babies' tubes move or come out and they have to be re intubated and it has to be done fast. Charlie had 10 people working on him in various ways and those 10 amazing people got his tube back in and saved him. As a parent, this was horrific to watch. Nobody should have to see their child go through this. You want to run out of the room and hide in a place where this doesn't happen but that just isn't possible. Your job as a parent is to stay there and watch and be strong for your child. You don't get the luxury of falling apart. Once Charlie was stabilized, he was tucked back into his isolette and left alone.

The doctors were really pushing for us to have skin to skin time with Charlie. As much as I was dying to hold him I very much understood that, given the recent trauma of re-intubation, this probably wasn't the best day for it. The doctors disagreed and really encouraged we try skin on skin today. So, we did - and it was a disaster. I was set up in a chair and Charlie was carefully placed inside my shirt. The nurse started to notice after about 5 seconds that his color was fading, Charlie was turning blue and his heart rate was plummeting. No sooner had he been placed in my shirt than we had to stop because he wasn't breathing and was now turning blue. The nurses got him back into his isolette and, once again, stabilized him.  His heart rate returned to acceptable levels and his color returned as he began to take oxygen in again.  This was pretty traumatic for both David and me.

So, as I said, today was rough. We are hoping for a calm day tomorrow because all of us Texas Fitzties could sure use a calm day with a sprinkle of good news.  

(A)

November 28, 2013. Oh yeah, today is Thanksgiving

So it probably won't come as a big surprise to anyone that this Thanksgiving was kind of the holiday that wasn't for David and I.  We got up and came to the hospital as we normally do and met with the team for rounds.  The news was pretty good. The boys looked good and were doing just what the doctors wanted them to be doing - resting and not getting worse. Charlie had opened an eye! Go, Charles!! Things were so quiet that David and I actually went out of the hospital for lunch. Lunch was nice and it was great to eat something other than cafeteria food. We came back from the hospital and things were still good. We stayed a couple more hours and then went home around 5:30. Once we were home we were rolling around in all the "good news" i.e. no bad  news of the day.  And then the phone rang. It was the Resident letting us know that Henry's urine output wasn't where they wanted it so they were putting him back on dopamine for his blood pressure. My initial reaction was fuck, blood pressure issues are how things seem to start with Henry. The resident was great in explaining what exactly she was concerned about and helping us understand it was more of a precaution than an emergent situation. I climb slightly down off the ledge I've been loitering on and we eat and climb into bed. And then the phone rings again and I climb right back on my favorite ledge. This time the call is about the blood cultures from Henry's PICC line and peripheral cultures. They have come back positive for infection after 48 hours.  Double fuck. They are going to start him back on Vancomycin to treat the infection and the infectious disease team will be there in the morning to chat about what we do. We hang up with the Resident and I glare at my phone. It's clear to me I'll be sleeping on my ledge of fear tonight and we just need to get to the morning so we can get a plan going. 

(A)

November 27, 2013. Visitors

The Wednesday before Thanksgiving was one of those days where nothing negative happened. Those are good days. That is the way of things these days - just don't go backwards.

The Myers family was all gathered together at The Woodlands for Thanksgiving so we had Rob, Shelly, Dave and Anne come down to visit. We had lunch at Benjy's and then brought them in to meet their nephews.

(D)

November 26, 2013. Another Head Ultrasound

Good news. We are managing to keep things stable.

Today was about two things; the result of the blood culture to see if Henry's infection is getting cleared up by the antibiotics and the interpretation of the head ultrasound. The infection was good news and the head ultrasound remained scary and confusing and I am leaving that to a future Aly post.

Their Social Security cards were delivered. Their first mail. 

Henry is keeping fluids and looks quite chubby..

(D)

November 25, 2013 Marvelous is Back

The weekend and nightshift doctors are very good but we were both ready to see Dr Marvelous again and get his perspective. He has known our boys since they were born and really knows them.

The weekend had, of course, been a setback. The path that had been mapped out from day 1 had always been "if things go well". We have strayed far from the going well path.

In a nutshell, we now need a period of no bad shit happening. Starting today.

Henry has an infection that everybody seems to think we can take care of (Aly got to meet the Infectious Disease doctors, I am sure she will go into how that meeting went too).

Charlie had a repeat of his head ultrasound and by the time it was taken and the results posted, Dr Marvelous had left. We had a confusing meeting about it late on Monday but Aly and I both agreed we should talk to Dr Marvelous about it in the morning.

Henry opened an eye today.

(D)

November 24, 2013. SIP or NEC Again

Overnight on Saturday into Sunday we got some calls from the hospital (Aly will write later about how it feels when that call comes in) telling us that they were giving Henry blood and blood pressure medicine. We were confused and, multiple times, had them confirm it was definitely Henry they were talking about. Surely they meant Charlie?

When we arrived at the hospital, the dayshift doctors hadn't started their rounds. When I looked at Henry I felt immediately worried. His belly was showing the same swelling and bruise color that we had seen in Charlie on Friday. As soon as the doctor came in, Aly was showing them and telling them that we needed an X-ray. They agreed, of course and we watched the next few hours play out like a script we had already read. Henry did, indeed have the same issue and got the drain. I spoke to the surgeons, nurses, doctors, pharmacisits, cleaners, anyone about what happened with Charlie on Friday and asked them to make sure that there was no repeat.

Thankfully, there wasn't.

The other thing about Sunday was discussion about Henry's skin. He had shown some issues around his armpits and on Saturday evening, someone had tried an antifungal powder on him that had really dried him out. This got some discussion that later led to some more confusion because Charlie's skin is so bad, whenever anyone is asked about skin they assume we must mean Charlie.

(D)