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)

November 23, 2013. 1 Week Old

Saturday proved a very strange day. We had been calling all night so we knew that Charlie had been staying stable all night. It was heartbreaking to see him but he was alive. We sat at the hospital for hours and we couldn't believe how calm everything was. They dimmed the lights and since the care plan for the day for both boys was to rest, they had very little interference. It was impossible to believe that there could be a day like this so soon after yesterday's crisis.

We left the hospital at 4pm and did some errands, regularly shaking our heads in disbelief. 

(D)

November 22, 2013. Part 2, Bleeding

Charlie had a blood transfusion after his drain was put in and he also got "blood products" because the tests were showing that he was coagulopathic. 

As we moved from the day shift to the night shift, there was some discussion about whether he was bleeding too much. It escalated from there and there was a drop in blood pressure. We stood and watched this number go down and down while we waited for more blood to come up from the blood bank. It was awful. 

They eventually got things to a point where blood, fresh frozen plasma and platelets were going into him at a rate that kept things steady. We left, exhausted, about 11. 

(D)

November 22, 2013. SIP or NEC

Looking back (on November 28), Friday the 22nd was a crazy day. Henry was doing really well and it was decided that he could try a tiny amount of milk, just to test how he processed it. His lung drama was looking behind him - the latest chest X-ray looked good. Given how difficult a day it turned out to be, it was really good that Henry was doing so well.

Charlie, however, was not doing so well. On the day Charlie was born, Dr Mandy called Charlie's skin "terrible" and this Friday began with his skin being discussed. "Wound Care" were going to be consulted to make sure that we were using the best methods available for dressing his skin. One of the wounds he had was the failed attempt to put the PICC line in his left arm. It just didn't seem to be stopping bleeding.

Skin problems were put to the side, though, when Dr Mandy decided that he wanted X-rays on Charlie. Unfortunately, his suspicions proved to be correct. Charlie had a perforated bowel and we needed to call surgery in to insert a drain. Like before, I don't think that there is much point in trying to describe the condition here. It's either SIP (spontaneous intestinal perforation) or NEC (necrotizing entrecolitis) but, at this stage, it's the same treatment. Surgery inserts a drain in the abdomen.

Aly is going to write about the people we have met at the hospital so remember to look up "Vince the Drain Guy".

This was a very hard day for Charlie but it was going to get a lot worse before it got better.

Henry, however, is looking great.



(D)

November 21, 2013. VAT Team

The Vascular Access Team are called in to put PICC lines into the boys. One day, the lines in their umbilical cords / belly buttons will have to come out and the PICC line will be how all their nutrition and medication is given to them. Poor Charlie had a failed attempt on his left arm but they eventually got it in for him on the nightshift.

We're spending every day at the NICU and sleeping at the house.

As mentioned in the introduction, we are going back in time to fill in what happened each day. Once we are caught up, Aly will post more details but, for now, I am giving details of the how the boys are doing day by day.

I like to use the flap at the top to look at them - it feels like I am disturbing them less, though with their eyes closed and the mask on, it is fine to lift the cover.

(D)

November 20, 2013 PDA

Patent ductus arteriosus (PDA). If you are reading this, you have access to the internet so I won't insult the medical world by giving my uneducated interpretation of this condition. Both boys have it. Henry's is being treated (with Ibuprofen). Charlie's head ultrasound results has Dr Marvelous wanting to wait and see how things develop.

We have a little cabinet in the room and we have books so we can read to them.

(D).

November 19, 2013 Settling In

We get a bit of different news about the interpretation of the head ultrasound but, again, it's a situation that we are choosing to deal with slowly.

Other than that, Tuesday is a day of continuing to learn; learn how the NICU works, learn about the problems our boys are facing and the challenges ahead.

Here's what their room looks like.


(D)

November 18, 2013. Aly Leaves Hospital

Monday was our first day of really learning the way the NICU worked. Although, of course, the boys get care 24/7, the hospital is a little different at the weekend. Dr Marvelous explained that Henry had done well to survive and we started to learn the different medicines they were being given. They called for a head ultrasound for Charlie.

Aly was released from hospital and got to see her house for the first time in weeks. We turned around pretty quickly, though, and headed back to the hospital to see the boys.

On Monday afternoon we were given the news that there was bleeding in Charlie's brain. This was devastating news. However, our understanding of what it means is still growing and Aly is going to write about it more in later journal entries.

 

"Photo Therapy" is where they put the boys in ultraviolet light to deal with jaundice. They were both on it from early on. That is why you see the photographs of them with their eyes covered. Here's one of Aly helping Henry get a diaper change.

(D)

November 17, 2013. Henry's Lung

Sunday, during the day, has us learning that Charlie - first out, smaller - needs antibiotics. The only symptom we know of is lowering blood pressure, but a broad range of antibiotics is common for very small premature babies if there is the slightest suspicion of infection.

 

We went in to their room around 9pm to say goodnight. There was some fuss going on around Henry's isolette (aka incubator). He was being "bagged" and they couldn't get the ventilator to get enough air into his lungs. 

 

We later learned that Henry had suffered a pulmonary hemorrhage (bleeding in his lung). We also learned that a lot of premature babies die from this. 

 

This would not be the last time that a major event happened when Dr Marvelous was off shift. 
(D)

November 16, 2013. The Boys are Born.

We are at the Pavilion for Women at Texas Children's Hospital. The boys are both delivered in the OR on the 9th floor. 

5:20am Charles George Fitzpatrick is born via natural delivery weighing 1lb 8oz.

7:26am Henry Michael Fitzpatrick is born via c-section weighing 1lb 9oz

Boys are immediately placed in the NICU on the 8th floor and Aly is taken to the 12th floor to recuperate. 

There are plenty stories to be told about that day but we are writing to give people updates on how the boys are, so I will stick, mostly, to those details. Dr Marvelous (a name that will come up again and again) went through the same procedure for both boys; get them resuscitated and get lines in them to feed them etc. We were warned that surviving being born was one of the big hurdles that the boys were going to have to get over, so it was a very scary time. Joyous, of course, but scary.

When Charlie was born, Aly was taken back out of the OR to her room. In the prologue that we haven't written, we will explain more about the plan but, briefly, we were hoping that the labor would stop after Charlie was born and that Aly could keep Henry in for a bit longer. So, I went down to the 8th with my new baby boy and Aly was left to try and hope that the contractions stopped.

They didn't.

After Henry was born and stable, he was wheeled in to see Aly before being taken to the NICU - the first time Aly got to see either of them.

It was a crazy and stressful journey but we were parents now and all the hoping that they wouldn't come early was replaced with hoping that they can survive.

Once she was well enough, Aly and I took a trip to the NICU to see both boys and then Saturday ended with us both sleeping in Aly's room on the 12th floor with our two little boys asleep down on the 8th.

Below is a photograph of Charlie as soon as he was born. Dr Marvelous described his skin as "terrible".

This was taken when Henry was brought in to Aly's room;

(D)