Good Day

Henry's surgery was a success and Henry is fine. 

I start with that because I assume that is what most readers are wanting to know but also in case our surgeon is reading - it's a good opening. Instead, we got "when we first went in, it was like a bomb had gone off".  To be fair, as I said before, we really like this surgeon and he actually managed to improve his standing with us a little more just after the pre-op consult. As I previously talked about, people's beliefs really come right to the front in difficult times so I really shouldn't have been surprised that our surgeon made this request: he told us that it helps him if he prays with the family before a surgery, so would we mind if he prayed with us? You would have to really, really dislike praying to risk putting the surgeon off of his game, don't you think? I thought his words were fantastic. He asked his "Heavenly Father" to give Henry strength and asked for a little help for himself. Seemed an appropriate message to me.

We waited in surgery's waiting room and while we did I wrote part 1 of the story before they were born while Aly marveled at the chaos around us. We both needed something to avoid worrying about what could be happening. We got our call to go meet the surgeon and, sorry Magoo, the chairs were full size this time. After the "bomb went off" comment and catching us up that Henry was ok, his post-op chat was really good. The just-dumbed-down-enough analogy he gave us was this; if you think of handling intestines like handling cooked spaghetti, the area around the perforation was like handling cooked spaghetti that you left in the drainer way too long and it all stuck together. If you try and pull it apart, it all breaks and the mess gets worse. So, they eventually found some spaghetti they could handle well and worked with that. Unfortunately, this was further up the track towards the stomach than we would have liked. However, we were assured that the dried up sticky stuff isn't lost and it will be fine in a few months when we go back in. In the meantime, Henry will continue to be fed by IV, with a bit of milk to make sure his stomach keeps busy. It sounds awful, but they are very good at this at Texas Children's Hospital and we believe in them.

For now, though, it is about getting Henry better after the operation. I have learned that a good first 24 hours can be misleading. So the worriers, hopers and prayers have plenty to worry about, hope for and / or pray for until Thursday, I would say. Henry needs to keep up his blood pressure and show us his system is working. We are on pee watch again, people.

I hope that I don't come across as too light hearted on this. It isn't escaping me how serious all of this is. It's just that, once you train yourself to move day by day, you can get quite giddy on days where disaster doesn't strike. Put it this way; I could equally report today as "my tiny son, who is 6 weeks old but still weighs only 3 pounds had abdominal surgery today and now has an ostomy bag" or "my son had an operation today and survived and is fighting on in his long, hard fight and I could not feel prouder... and let me tell you about the surgeon".

Mondays are Charlie head ultrasound days. He gets daily visits from neuro surgery and today's visit was from the attending, a top guy in the field with absolutely immaculate facial hair. It's like he wants to show how good he is with a blade as soon as you meet him. Charlie's head feels good and the ultrasound results are encouraging. No surgery is on the schedule right now and Aly and I love to wallow in tiny little drops of good news from neuro surgery. I think we even saw a little smile from Dr Perfectbeard today as he agreed that the ultrasound report was, indeed, good news. 

Progress on Charlie's feeds slowed then stopped today but he has plenty of time and, like with Henry, he gets all the nutrition he needs by IV for now. Getting nutrition and growth right is the top priority now and the key is to not rush anything. The backward steps can be devastating, as we have learned. 

Reflecting, I finished last night with the hope for a successful surgery for Henry and no bad news from Charlie's ultrasound and we got both. So, as Ice Cube once said; "nobody I know got killed in South Central L.A."

(D)

Prologue Part 1

As I said in the introduction to these blogs, the posts started when Charlie and Henry were born but the story started a lot earlier. 

As I sit in the waiting room as Henry has his surgery, I thought I would start to write about the difficulties we had with Aly's pregnancy. The first big drama happened in week 12. Aly woke up at about 4am and had been bleeding. With a drink in my hand, I can make this story last quite a while but here I will keep it to the quicker version for here. The blood clots that were dropping from Aly were like nothing I had seen before. They were like organs - like a piece of liver (at this point, in the long version, I say it was offal and everyone laughs and laughs and says "oh David you are so funny and great and handsome"). Although I didn't (and don't) know what a miscarriage looks like, I was certain that this was what was happening. I  think that the doctor we saw thought so too because there was a tone of surprise in her voice when she saw both babies and heard two heartbeats on the ultrasound. It was eventually explained that Aly had a total placenta previa and, although they were changing her doctor over to a high risk doctor, there was not much that can be done. As a precaution, Aly went on bed rest part 1 and, on the plus side, we got lots of ultrasounds. 

There were a few more bleeding scares but, eventually, the placenta moved and, for a few weeks, Aly had a "normal" pregnancy. Belly was growing, maternity clothes were bought. We even painted the babies' room. Although the bleeding had been very scary, we both were staying positive because we were assured that it didn't necessarily mean anything bad would happen. 

20 weeks came and we went to the anatomy scan. It was cool to see the high definition images of the babies and the ultrasound tech was a cheery man that we constantly needed to remind that we were choosing to not know the gender of the babies. Everything was great, baby measurements were what they wanted to see. Nothing to worry about. The final part of the scan is where Aly's cervix is measured. Aly knew about this part and had had it measured a few times before. She whispered to me that we needed this measurement to be long. It wasn't. 1.5cm meant a shortened cervix (also referred to as incompetent cervix) and bed rest part 2 was to begin. We were really upset but we were optimistic - many women make it to full term with this issue, we are told. 

21 weeks and we are back for a checkup. 1.4cm. Not much, if any, change. OK. Maybe we can do this. Nice bed resting, Aly. 

22 weeks. Aly had a feeling that something had changed and that something was really wrong. She was right. Measurement was maybe 4mm (that's 0.4cm for those not so used to metric). This is devastating news. We are told, as I remember it, that the babies could come at any time and that it could happen really fast. I can't remember exactly what was said but there was definitely some mention of a toilet because what I do remember is Aly sobbing that she can't have her babies in the toilet. Aly wanted to go to hospital. As she put it, if she was going to have to give birth to these babies and it was too early to do anything to save them, then she couldn't risk it being at home. I agreed. Thus began bed rest 3, hospital bed rest. 

For those of you that don't know, 24 weeks is a big deal in pregnancy. In the US, it is a legal line in the sand too. The term "viable" is horrible but that's what is used. We were two weeks away from viability. 

I can't honestly remember if we had any optimism left at this point. I think we did. We were in a hospital in The Woodlands, which is where Aly's parents live, where she grew up and where we originally intended to have the babies. The hospital had a NICU but didn't take anything younger than 28 weeks gestational. We talked about transferring but the issue was that Aly wasn't in labor so the hospitals with those NICUs wouldn't take her. I think I had hope that we could make it to 28 Weeks and they could be taken care of up there.  Aly thinks that, even at this stage, we still had hope of making full term. 

That was part 1. Aly was in hospital 22 weeks into her pregnancy and, basically, if the babies came in the next two weeks, it would be considered a miscarriage. So, with that being the worst case and full term being almost impossible, we started getting our heads around premature birth and what that would mean for us.

(D)

29 December, 2013

Aly and I are beginning to find our feet in the new location and Charlie and Henry don't seem to have noticed the change.

Charlie has a head ultrasound tomorrow (Monday) as he does every Monday and, for the first time, we are feeling a tiny bit hopeful about it. We are still terrified - terrified with a little shake of hope on top. We'll see. Other than that, he has come off the steroids they put him on to help recover from his surgery and seems to be doing ok with it. They have been slowly increasing the amount of milk they give him and he is tolerating it well. He is growing and he looks great as you can see from the photos below (Charlie is the one in the hat).

Those of you that have read all of the blogs know that Charlie tends to get more of the column inches while Henry has been quietly growing over in the other isolette. As a reminder, though, Henry also has a perforated bowel and the difference has been that the way he has dealt with it has been a little less urgent - or emergent, as they say in the hospital. We agreed with his surgeon a few days ago that it was becoming time to operate on Henry (prompting the move). As I write this, it is Sunday afternoon, and Henry is the first into the OR tomorrow so that will be about 7am. As worried as I am about my poor wee boy having surgery, it now can't come quickly enough. You see, Henry has been retaining fluid for over a week and, without going into one of my amateur hour explanations, we need to fix his blocked intestines so that we can address this fluid retention. We both really like the surgeon that is doing the operation (with a smile, I am a tiny bit worried if he can be a good surgeon because he isn't an arrogant expletive deleted). Here's a photo of Henry today;

So, in summary - early start for our family tomorrow (Monday) and one that, by the end of it, we hope to have had more good progress reported on Charlie's head and a successful surgery for Henry.

(D)

West Tower Update

We moved on Thursday afternoon. Today, Friday, we spent the day with the boys in their new spots.

Henry has an issue with retaining fluid that is being watched. His other issue about his blocked intestines is almost certainly being dealt with on Monday by surgery. He gets an X-ray on Sunday but nobody thinks it is going to show anything that will postpone or cancel that.

Charlie is doing well and they upped his feeding. Aly's milk supply is getting used! Today was the last day of his current neurology team visiting him. They are such nice people and we will miss them. The January team have big shoes to fill.

(D)

Go West

We didn't spend very long celebrating our reprieve from the tower. As I wrote, they want us to move To the main hospital and one of the departments that are most vocal about this are Aly's friends the surgeons. This morning (Thursday) we sat with the guy who is going to do the operation on Henry and he said he wants to do it on Monday. The plan is to give him an ostomy like Charlie. We had all been hoping that the perforation in his belly would fix itself but it hasn't so the time has come to give him a break.

With a surgery planned, the move is back on. As today developed, it became clear that there was a spot in the tower that was a good fit for us. The boys together in an area that was good with a doctor team that was well suited. It was put to us that we should consider moving now rather than later and grab it. 

Aly is one of those people that, once something is going to happen, she just wants it over with. So, we are going. Now.

So say goodbye to our lovely big room. We will next be communicating with you from The West Tower. I hope they have Internet there. I hear that chairs are in short supply. 

(D)

Season's Greetings

Our Christmas turned out to be ok. As Aly mentioned, I didn't go to the hospital on the 24th because I was a bit sniffely. I was really worried about giving anyone at the hospital a cold - be it doctors, nurses or, of course, the boys. A day in bed and lots of fluids did the trick, though, and I was up for going to the hospital on Wednesday. 

There was some signs of baby colds in the boys on Tuesday but their vital signs were good and their breathing was excellent. The ventilators can deliver up to 100% oxygen but the goal is 21% - which is the percentage oxygen in the air. Both boys were on "room air" on Tuesday and Wednesday and that's a really good sign that their tiny lungs are doing ok. 

Aly and I had decided some time ago that we were not going to make any plans for Christmas. As anyone who reads these blogs knows, it's not uncommon for something scary to happen and we didn't want to plan anything that couldn't be cancelled at a moment's notice. Strangely, neither of us have really let the "Holidays", as the Americans say, upset us too much. Mostly because there's been plenty to take our mind off of it and, personally, my situation at work has been a little easier to handle because the office is a bit more laid back from Thanksgiving onwards. 

The main thing on the agenda for us was a proposed procedure for Charlie to deal with his retaining fluid in his fontanels. I have mentioned before that Charlie's brain is a topic that I know we haven't covered in very much detail in these posts and that's going to continue for now. Anyway, it was agreed that Charlie needed a procedure and it was agreed that the procedure would be done in the OR on December 26th. I mention the OR because the other surgeries they have had have been "bedside", where the surgeon makes the room sterile and does it in his bed. The OR is in "The West Tower". Texas Children's Hospital has been around for a while but a few years ago they expanded by building "The Pavilion for Women", which is where the boys were born. The Pavilion is what I would call a maternity hospital. It has a NICU - a really good one - but they mostly want to deal with the newborns that need some help. Our boys, as you have gathered, need a lot of help and, so, are candidates for a transfer to the main hospital. Or, as we say, they are to be sent to the tower. On Christmas Day, we got a bunch of good news. Firstly, Charlie's head was declared good enough that they didn't need to do the surgery right away. Secondly, we didn't need to move to the tower yet, since Charlie wasn't going to the OR. Thirdly, Charlie's operation on his belly had been a success and it was time to try him on feeding. Aly has been pumping breast milk ever since they were born so we are delighted that they are ready to use it. 

Aly's parents, Rob and Suellen, had asked us if they could spend time with us on Christmas Day and our first answer was that they should make another plan because we were only planning to be going to the hospital. That didn't influence them one bit and, once it was looking like things were going ok, we made a plan for them to come down to the hospital and see us all. The boys continued to be steady and, after rounds and after our good news extravaganza we started to make plans to eat. On Thanksgiving Day, Aly and I had sneaked out to the Four Seasons in Downtown Houston where they had a really impressive buffet. We agreed to give that a try. Even though they were fully booked, some nice guy who turned out to be the director of food and beverage took pity on me and found us a table and we all had a great feed. Charlie and Henry were not the only Fitzpatrick men with distended bellies. I stuffed my face.

We have no photos from Christmas Day so here is another one from our festive photo shoot.

(D)

Dec. 23, 2013 Henry Extubates, because of course he did

Here's a quick update Aly style because David has gone home sick. Thanks for that universe!

Yesterday Henry had an unplanned extubation. It happened at the end of a holding session and unfortunately it was David who was holding Henry when it started. We were just about to put the boys back when Henry's nurse noticed he was frothing at the mouth. She went to start to suction him and his heart rate dropped and his vent alarmed.  He had so many large secretions in his mouth that the nurse couldn't get them and his tube was clogged up. After a minute of trying and a continued drop in his heart rate the "all assist" button was pressed and the alarm sounded for all hands on deck. Everyone came rushing in and they were able to get him reintubated and he even got an upsized tube which is more appropriate for his size. This was pretty traumatic to watch for both David and I. Even though it went very well, watching your child's heart rate drop to the 50's while hear words like "I don't see chest rise" kinda puts you over the edge. After things were settled down we met with the doctor and reviewed what happened. She assured us she did not expect Henry to suffer any long term effects from the event and encouraged us not to let this scare us to the point we don't hold the boys any more. As soon as whatever illness is descending upon us has passed we will be holding them again. No doubt about that.

In today's news, Charlie is getting an ultrasound on his head and is currently scheduled for a little brain surgery on Thursday. Thursday is also the day we move from our beloved home in this NICU over to the dreaded West Tower. We have spent 5 weeks here and made friend and formed bonds with the staff so leaving is going to be very emotional and hard. Just what we need right now, something else hard and emotional to deal with eh? Oh well, it's part of it and we just have to suck it up and do it. I think that's about it on the update front. I'll leave you with one of the pictures we took yesterday. Thanks to one of the breathing angels we got a great family Christmas picture.

(A) 

Charlie Extubates

I'm on the news desk again. Charlie's nurse had a tough night on Friday night. The bradycardia events that were mentioned before reappeared at the start of her shift and the magic medicine / placebo / red herring (depending on how things pan out) was administered and things got a bit better. That was until 5am when things started going awry. Alarms went off because Charlie stopped breathing. Doctors were called and his breathing and heart rate were eventually restored. Charlie, we would learn, had "coded". Aly gets an email whenever certain things are ordered for the boys. After the doctor had put Charlie's new breathing tube in, she ordered an x-ray to check its position and Aly got an email. The bing on her phone woke her and she called the hospital. 20 minutes later we were at Charlie's bedside getting a report. 

He is fine. It is a serious business and we had a very difficult morning but once we got there he was already stable and all the plans for preventing it happening again were in place. As awful as these events are, they happen, and we have to accept that. There was a fair amount of discussion between the head of neonatology (the on call doctor that night) and myself about the above mentioned medicine but it is difficult and confusing so I will come back to it when some of the variables have been removed. At the moment, Charlie actually remains on a fairly standard premature baby list of supports. 

Henry, on the other hand, got to dress up and cuddle his mom for a while.

We are home now and we are worried but we believe Charlie isn't really any worse off than he was yesterday and tomorrow is another day. 

(D)

Regarding Henry

Firstly, don't worry, at time of writing, Henry is fine. Given the way our reporting has gone recently, I suspect that some of you read that opening and internally said "oh, no... ". It's just a blog about Henry to make sure you all know we haven't forgotten him and to plagiarize the 1991 movie title. (Did you know it was written by JJ Abrams?)

Secondly, today, Friday, was a good day and, although Charlie's bradycardia episodes were not entirely eliminated, things really look on the right track. We'll see.

Henry didn't have as eventful a week as his brother but there was some progress. A few weeks ago, Henry perforated his bowel and had a drain put in. Later, he had another drain put in by Interventional Radiology. I have now worked out that the blog Aly wrote about that day never made it onto the site. I am not sure how to correct that. (In the meantime, on the same day, Dec 3, Henry went to IR and Charlie had an MRI. Interestingly this is still the only day that either have left the room since they were born). Back to Henry's tummy - he had these drains inserted and surgery have been letting things be for a while before making a plan; until this week. Drain 1 came came out and it has been agreed to inch the "IR drain" out slowly next week. You can see the drain in the photo below;

The drain, in theory, extracts anything that leaks into the abdomen. Henry hasn't been leaking for a while so his drains are now not really serving a purpose. However, poor Henry still has a big tummy. The reason is that they think his intestine is blocked (probably with scar tissue from the previous perforation). Although he isn't being fed, there is still air and juices and gunk in there. That should be dealt with by his replogle tube. The long term solution is a surgery but we want him to be big and strong enough to handle that so we have another "balance" to deal with. What is the optimum time to leave him growing but only getting IV nutrition before operating? In the meantime, we wait and say Henry is "fine", even though he weighs just over two pounds and doesn't have a working digestive system. 

(D)

It's Thursday! Remember?

As was mentioned, it has been an extremely strange Thursday but let's try and not forget that Thursday means volunteers taking photos. This also helps us remember to see the joy;

 

Henry preferred to keep his eyes closed throughout his photo session;

We think Charlie knew that everyone wanted reassurance that he was fighting on, so decided to open his eyes for the nice lady;

For those that were wondering from last week, no, I did not go to the office and, no, we did not go and make our own cards. One day.

(D)

Thursday 12/19/2013 12:35 update

So this morning has been nothing short of insane. Charlie was showing all the classic signs of a catastrophic brain event and David and I thought that we would be losing our Charlie. But then slowly, Charlie started showing everyone that it wasn't over. To the surprise of everyone the tests that were run all came back normal.

How can this be? What is going on? Good questions. Well, the theory at the moment is that the two things that were scaring everyone were maybe not from exactly the same root cause. Let's start with the seizure-like movements. They've stopped and we are assuming that they were related to the hydrocephalus, which is fluid in the head. The urgent procedure by the neuro-surgery people relieved the pressure and the symptoms stopped. 

The heart rate being low, the blood pressure being high and the bradycardia events have not exactly stopped but the assessment of them has rather changed. Here's the theory; Monday's surgery led to Tuesday's crash leading to Wednesday's weaning from Tuesday's medicine. By Wednesday night, Charlie was still on steroids, which can increase the blood pressure and lower the heart rate. Still with me? Charlie's heart rate is lower than "normal" but there's some level of explanation for that.

We are trying to work out what Charlie's normal is after the surgery. In order to do that, we need to give him time to heal and to get all the support we gave him out of his system. 

However, what isn't being explained above is the heart rate dropping. The bradycardia events we mentioned are actually a dip in the heart rate. Where it is true that if you drop from a low baseline, you get to alarming lows more quickly and more often, there is still a question as to why it is dropping at all. 

So, after reading this if you feel like you still don't really know what is going with Charlie don't feel bad, nobody else does either. We will update again when a clearer picture develops. 

(A&D) We wrote this one jointly because both of us are fried emotionally and we needed the joint brain power to make this slightly coherent. 

Thursday 12/19/2013 6:53am

We got a call at 4:30 this morning that Charlie had had 50+ bradycardiac episodes during the night and his heart rate was in the 1 teens to 125s. Neurosurgery was called and they felt a fontanel tap was urgently needed to remove fluid causing pressure on his brain. This was done about 5:30 this morning. We are currently waiting for another head ultra sound to be done to check for another possible bleed. Neurosurgery is developing a plan and will meet with us later to discuss. Another surgery is imminent, whether that be in a few hours or a few days we don't know. Tests will be run on the fluid that was pulled from brain to test for infection and blood. This will be a very tense day and we will update when we can.

(A)  

Looking Back

Wednesday was comparatively uneventful. Charlie kept peeing and, by the end of the day, was almost entirely off of the dopamine. Everyone feels good about how he is doing.

Henry had one of his drains removed and spent a couple of hours cuddling his proud Daddy. 



During my cuddle time I reflected about how the weekend was really weird. On Saturday, we were not as sick as we feared and on Sunday Charlie was sicker than we knew. We decided that we shouldn't go to the hospital on Saturday because we both felt that we had a cold coming on. Then, on Sunday, feeling better, we went in but after a few hours that included a great conversation with the head of neonatology we decided that the boys were doing well and, maybe, we should get out and see the outside world for a while. 

What would we do?

For a while, before Aly got pregnant, we were regulars at a restaurant near us called Liberty Kitchen. We would walk there and sit at the bar. We got to know the people that worked there and met some great people. When the restaurant was a year old, we got a great thank you from them that hangs in our kitchen. 



Also, we loved to talk, on the walk and once we got there. We both felt in the mood for a walk to The Kitchen. 

On the way, I asked Aly if she thought we would recognize anyone, since it had been so long since we had spent time there. Well, we did and our old pals knew about Charlie and Henry. They had a card signed for us and all gave us hugs. We had great food and drinks. I cried. 
I wanted to share the story of our Sunday date for a few reasons. Firstly, I am amazed by how generous everyone has been. People really want to help and we are really grateful and people have really helped. Secondly, it made me reflect on something that a lot of people believe but I don't really know about. People tell us that they believe things happen for a reason. As I say, I don't know. But, in this instance, if we had known how sick Charlie was on Sunday, we would not have felt comfortable enough to have the afternoon that we did and that would have been a shame. 

(D)

Pressure

I am not very good at forecasting how these NICU days are going to play out. Even though Charlie had surgery on Monday, I went in Tuesday morning feeling like he was doing quite well. I even dressed for work. 

Things started to change at rounds, where Charlie's lack of urine output was causing concern. A plan was agreed and we went to lunch a bit earlier than normal.

On the way back to the room, we saw our team's fellow, Dr K, and she looked anxious. She told us she was on her way to our room. We soon learned that the concern was Charlie's blood pressure. We all have our blood pressure measured by a "cuff". On tiny boys like Charlie, this doesn't give a great reading and, when blood pressure is a concern, they like to get a direct reading from an arterial line. We all anticipated this and planned to put one in for Charlie's surgery. Unfortunately, on tiny boys like Charlie, this isn't easy. Two doctors tried and failed and we were left relying on the cuff reading, and it was dropping. Low blood pressure plus little to zero urine output equals big worries. 

I have grown quite attached to the monitors on the boys and I was sad that we didn't have the arterial line blood pressure reading and I knew that Dr K was a kindred spirit on this. She felt she had nothing to lose and made a call to Interventional Radiology (IR) to see if they would send a team over to put an "A-line" in Charlie. In the meantime, the dopamine was increased, the cuff pressure reading made more frequent and the discussions about what was going wrong began. 

Soon, whispers began that, not only were we getting support from IR, we were getting a visit from The Magician. Dr Marvelous had told us about The Magician before and we had met him briefly when he had put drains in Henry. On that occasion, Henry had to travel to The Tower. Was The Magician really coming to Charlie's bedside?

He did. It was universally agreed that if he couldn't get an A-line in, we weren't getting one. The first attempt (in his right arm) failed and I was now very stressed. Partly because of Charlie's blood pressure but also because I knew that without a true reading, the doctors were going to have to be more conservative in their treatment. 

About an hour after he started, TM got it in, got us a reading and it was ok. Needed to be higher, was a lot lower than the cuff had said, but was ok.  

My relief was very short lived. The reading started dropping. Scarily dropping. I began to wish for the days of the cuff reading when I could dismiss the reading as nonsense. Increase the dopamine. Order blood. I looked around and there was nobody to ask for. The team was all here, waiting for the dopamine to do its thing - get him stable so we can work out what the problem is. Aly was calm. She was by Charlie's side, telling him she loved him. I remember thinking that one of us was wrong because she wasn't as scared as I was.

Eventually, his blood pressure came back up. First to a not-scary level and then to a good level. Then, it stayed there. Everyone was now waiting for him to pee. Strange, I know, but I am writing this with a smile because Charlie peed. 

I am still scared. He is on a lot of dopamine and we don't know what the problem is. But he is stable now and, if he keeps peeing, we can make a plan in the morning. I will make no predictions on how Wednesday will go. Who knows, maybe I will make it into the office. 

Here's Charlie before lunch;

PS - Henry is "fine", in as much as being on full life support in intensive care can ever be "fine". 

(D)

Communicating

Lennon and McCartney mostly wrote their own songs when they were in The Beatles. Sometimes, though, they would piece together bits that they wrote separately and make a truly Lennon-McCartney song from that. My favourite example of that style is "We Can Work it Out" where John wrote the "life is very short" part and Paul wrote "try to see it my way". This is David writing and the reason I bring Paul and John up is that this post is actually written by us both. I think that this means it will be a mess, but maybe we can work it out. Here's Aly; 

Monday started out with an email from the hospital letting me know that Charlie was scheduled for an abdominal xray at 6am. As soon as I saw the email I called our nurse to find out why. Apparently over the course of the night Charlie's abdomen began to look more distended and blue. Those are the tell tale signs of a bowel perf. The nurse was really concerned at the sudden change in how he looked so she contacted the on call resident and he agreed an xray was needed. The xray showed free air in the bowel which again, is a sign of a perforation. We got to the hospital and met with surgery who were recommending surgery.

Aly likes to write these blogs like a news report and I tend to be more of a magazine piece. However, I will try and adapt. Dr Marvelous weighed in on  surgery's suggestion and  agreed it was the best way forward. He likes a plan. Nobody was saying that this was a new perforation. What they were saying was that the perforation had clearly not healed (or if it had it has re-opened) and that the existing drain was not communicating with the area of leakage. My concern was that I didn't really understand what was so different about this plan compared to the last time we cut him open. So, with apologies to the health care providers out there that surely roll their eyes at amateur explanations like this, his intestines have a hole. They don't know exactly where it is but they do know that they failed to get at it before and it is, therefore, reasonable to assume that they can't get at it again (it's in an area of intestine that is all balled up and sticky). So, instead, they are going to make a cut "upstream" of the hole and take it outside (an enterostomy or ostomy for short). So, anything making its way from the stomach would come out his ostomy rather than out of the perforation and into his abdominal cavity as it had been. Surgery would be performed at the bedside like his previous surgeries. The ostomy is a short term plan that is followed later by a more permanent repair to his intestines when he is old enough to cope with that; some time in late February.

We were of, course, worried sick about his ability to survive surgery and we left the room and went down to the third floor to wait.

At this point, I was supposed to hand over to Aly. However, the day rather took over and she hasn't had the chance. So, this is becoming more one sided than when we started.

Charlie's surgery went well. We were called back up and had a meeting with the surgeon in the play area of the 8th floor that was weirdly comical, given the tension, because we sat down at a tiny table on tiny chairs. We were told that it had gone as planned.

Back at the room, we met the neurology team and they dropped into the conversation that they had no problem with neurosurgery's plan to perform a procedure on Charlie on Thursday. Pardon? What procedure? When? The poor doctors had assumed that we had been told about this plan. Seems that we may have a problem with communication. We quickly got back on track and agreed that we really needed to have a sit down with neurosurgery.

So, we did, and it went really well. It turns out that they had been quite worried about Charlie over the weekend. They had detected an increase in pressure in his head and, along with the results of the ultrasound on Thursday and a reported increase in bradycardia events the criteria for intervention had been met. We countered that, since he had just had surgery this morning, was another surgery on Thursday really a good idea? Further, we discussed that the bradycardias had reduced and then we felt his head again and it was softer. With great relief, it was all agreed that there was no need to have the procedure on Thursday. Instead, we'd wait until Christmas.

Aly the optimist also got the neurosurgeon to admit that it was possible (very unlikely, but possible) that Charlie might start absorbing the fluid without the procedure and that this extra time will give that hope a chance of happening. She then decided to ask her "specific prayers" to pray speficially for that. 

Here's poor wee Charlie after his surgery;

Week by Week

If you only get your information about Charlie and Henry from this blog, they're fine. 

Monday is a big day again for tests and plans but the weekend was good. Alive and no worse.

No worse = good.

(D)

Competing for Nicest Person

Remember my photography volunteers? It's Thursday, so they're back. There's a commercial (yes, UK friends, I said "commercial") for AT&T that makes me smile where the kid is asked if she is "competing for cutest kid". I thought about it today when we were speaking to the photography volunteer because I think that she must be competing for nicest person - and we come across a lot of nice people here. We learned that we can go and sit with the volunteers and make our own little cards, if we like. Before I could even say "thanks, but that's really not our scene", Aly was squealing with delight and saying we would love to. I think I will be working in the office next week.

That said, it is true that I do really like their work and, as promised, here it is;

Here's how the windowsill of their room is shaping up;



Here's Charlie;

And Henry;

(D)

You've Come a Long Way, Baby

We were worried about Charlie last night (Tuesday night). Although Tuesday had been a reasonably quiet day, Charlie had been having "bradycardia" events. They are monitored constantly and they are said to "brady" when their heart rate takes a quick dive. They usually self correct and it is, apparently, not uncommon in premature babies. So, we don't normally worry about them.

However, Charlie was having more episodes than we had seen before and it's a bit hard to stop the demons creeping into your head when, let's remember, what we are talking about is your baby's heartbeat.

It was great to see Dr Marvelous this morning because he has a great way of making us feel better without being dismissive. So, he made some changes to the ventilator settings, talked to his new residents about how far Charlie has come and made us both feel better.

Tonight, reflecting on Charlie, I remembered that I chose not to share the first pictures of him too much at first. I remember not wanting the attention (sympathy?). Then Aly suggested the blog and I used this photo, that was actually taken by Dr Marvelous. For a while, I considered deleting the photo below that was taken after the day of Charlie's bleeding because I didn't want to upset people. He had 2 IVs in his scalp, several blown IVs in his legs and arms and open, seeping wounds all over. Even though he had his PICC line (and a wound in his left arm from a failed PICC line attempt), they don't give blood in a PICC line. To be fair to the nurses, they tidied things up in his bed but I took this photo at a point where they were, quite literally, just focussed on stopping the bleeding.

Tonight, I was looking at the picture below, taken of our darling son in his mother's arms and, although I know we have a long, long way to go and that I shouldn't tempt fate, tonight, I can't help but feel that our Charlie has come a long way in his short life.

(D)

All Quiet on the Southwestern Front

The nurses are a bit superstitious and don't like saying "quiet" or "calm" in reference to their shift because it can change so quickly, so I am breaking the rules with that title.

However, this is a quick post particularly for those who only get their information from this site . The good news is that we don't have a lot to report. Both boys have continued to be quite stable and have not had any significant change in their care plan or their health.

We are a little worried about Charlie today (Wednesday) and we are also meeting the new team of residents (it's a teaching hospital and we get new residents every month).

Maybe we can get Aly to write a little something later about the residents old and new for you all. I hope that's what she writes about because I don't want it to be about something else going wrong with the boys.

(D)

Nice Work, Monday

December 10, 2103

I woke up dreading today. I was worried that all the tests that were scheduled would bring back results that would push our boys further.  Further from healing, further from being without pain, further from growing and further from coming home. Unfortunately, the only thing we can do on days like this is to meet them head on and be ready to attack whatever new problem shows up. 

We got to the hospital early and watched as the ultrasounds were performed on Charlie's head and abdomen. We met with surgery, infectious disease, neurology and the primary team. We listened to rounds and watched as the results of the ultrasounds came in. We watched as Dr. Marvelous and his team kept refreshing the page to see if the results of the ultrasounds had been "officially read" by the radiologist. Rounds ended and the official results weren't in yet. Dr. Marvelous said he would be back as soon as he got the results. We went to grab a really quick lunch and were only back in the room for a minute when Dr. Marvelous appeared and said, "it's good news". The brain ultrasound showed no change from last week. Hot damn! This might just mean that Charlie's brain is now in a healing phase and we could avoid additional damage. I consider this news a win. His abdominal ultrasound didn't show anything concerning and we just have to keep watching it and making sure the drains are working. I consider this a win but I still think surgery are a bunch of narcissistic misfits. I was able to hold Henry for over an hour, which is the absolute best relaxation method I have ever come across. We actually left the hospital a little before 5 and drove home basking in a day that brought us hope and baby cuddles and the ability to breathe just a little deeper. 

(A)

And Now the Science Bit

A friend (hiya Dave) asked me about Henry and Charlie's feeding in an e-mail and, instead of answering, I thought it would make a good blog topic to describe some of the details of their care.

I am writing this on Sunday. Saturday was a good day and, although we had an unplanned extubation this morning, it was a very good, low drama version of what can be a scary event so Sunday is looking fine too.

Back to the feeding question, both boys are still getting their nutrition through a drip. The drip is called TPN (total parenteral nutrition) and is discussed and reviewed each day at rounds. They also get lipids, if you want to look that up too.


I think I mentioned in an earlier blog that, once upon a time, we were shown a care plan path "if things go well". On that path, the boys reduce the TPN and get fed breast milk. Well, unfortunately, they both perforated their bowels so we are still a long way off that happening. Instead, we are on the path where we can't rely on their digestive system to work. There are complications with being on TPN for a long time but, thankfully, the scientists have an answer to that too. If their liver starts to struggle, they will get moved to Omegaven (this post is sponsored by Google). We expect Charlie will be on Omegaven in the next week or so. All of this goes in through their PICC line (Google it!), which is fantastic because that lasts a lot longer than an IV, I have learned. 

There is a whole lot of amazingly clever stuff that is keeping our boys alive. I am sure some of it must be overkill. I'm not complaining that we have the iPhone 5 of the ventilator world (that's it in the background in the picture of Aly and Charlie having "kangaroo care"), as long as it doesn't forget that its main job is to keep them breathing.

Class dismissed.
(D)

Go Vols!

Aly used "Three Cheers" as a title this morning, which ruined my planned title "Three Cheers for the Volunteers". Instead, this title might attract then disappoint the Peyton Manning fans (there's a reference where my friends in the UK will have no idea what I am on about).

Anyway, this is about the people that volunteer their time to help people at the Texas Children's Hospital. There are loads, including, on Thursdays, some ladies that come and take photographs of your baby and make you a nice card. For free!

They also give you a CD with all the pictures they took.

I was very grumpy about the whole idea at first but I was wrong and I am looking forward to seeing them every Thursday and after they've been, I will share some of their work on this blog. Here's Henry;

Here's Charlie;

 

Since you asked, the reason that Charlie ended up with the more "Band Aid" style device to keep his tube in place dates back to when he was in his very early days. He used to have a "Neobar" like his brother but his skin was so bad that he lost a bit of skin on it one day. They changed to the Band Aid and it's stayed like that since.

 

You can see what happened to his face on the photo below.

 

 

(D)

Three Cheers for 3 Weeks!!!

Charlie and Henry are 3 weeks old today! Gestational age is 27 weeks for those of you playing at home. The doctors keep up with their gestational age to watch for developmental milestones and weight gain. Yesterday was a calm and comfortable day for the wee boys. They have begun being weaned off their pain meds because you just can't go through life on a Fentanyl drip. We were watching to see how they would react to coming off the Fentanyl and they are doing great. I just spoke with their nurses today and both said the boys look good and aren't having any problems with the reduced dose.  They will both be getting x-rays today to check on their drains in their abdomens. Their surgeon stopped by yesterday and you guys won't believe this, but we actually had a civil conversation. He's cautiously optimistic about the progress he is seeing in the boys. I'll take that. Our friends from the Infectious Disease department stopped by yesterday to check on Henry and report on what they have found from the pockets that were drained. For any of you science kids out there, the gunk they pulled out from the abscess pockets has come back as  gram positive. They are growing it and our fabulous infectious disease resident has pushed the lab to get the results back today. Apparently the lab doesn't normally run this test on a Saturday. Well, fabulous resident wasn't having that at all. She told them they would be running that test and providing results today even though it was Saturday.  I love this resident. She's had a soft spot for the boys from day one and she and I get on like a house on fire. So, we will get the results back on that today to see if this is a new form of infection or something left over. Either way, they feel he's being treated properly for just about anything that could come back. I think that's all for right now. Dr. Marvelous is on today and so is our darling head resident. She adores the boys and they always get extra looking after when she's around. I'll send some updates when we get our eyes on these x-rays and after the lab begrudgingly gives us the test results. 

 

Three Cheers for Three Weeks Old!!!

(A)

Belief

Aly has resigned two perfectly good coffee cups to the back of the cupboard in our kitchen because she has decided they are bad luck. She admitted this one to me and also told me that there are quite a few other superstitions going on and that I didn't need to know about them all. 

There's also a lot of praying going on. People who pray all the time are turning it up a notch or two and people who haven't prayed for a long time have decided to pick it back up. Aly told me that a friend of hers added Charlie and Henry to the prayer list at her mega church in Tennessee, so that's like 3,000 prayers at one time. If prayers were like screams in Monsters Inc. we could power the whole of Texas. 

We met another NICU parent today. Her son died at 1 week and her daughter is still in NICU at 10 months. She lives 3 hours away from Houston and lives at the Ronald McDonald house, a charity funded place for parents. I am sure my friend Pauline taught me that McDonalds were 100% pure evil but that seems like a nice thing to do. Anyway, I bring her up because she said she stays sane thanks to her prayers and her knowledge that God has a plan for her. 

Some people believe in God, some don't. Some people believe that the coffee cup they drink from in the morning could affect the events of the day. Most don't. Since our time in the NICU I now believe in The Breathing Angel.

Aly has asked me to not name the health care providers so I will call the Breathing Angel, BA. BA was the respiratory therapist (RT) when Henry was born and I remember thinking at the time, when I had no idea what he did, that he had an aura. Our boys can't breathe on their own yet. Their ventilators are essential and get attention from a RT every few hours and BA is one of that team. However, it was the day that BA helped to re-intubate Charlie that he got his name. There was another lesser event on that same day when BA just floated in and gave breath to Henry. Call it coincidence if you want, but when our boys need to breathe, BA seems to be around. So, if you are one of our praying friends, next time do me a favor and say a little thanks for the Breathing Angel for me. 

(D)

A Day Straight From Hell

December 6th, 2013- 

 

I'm going to go back and write about the events of this week. You guys know how rough Tuesday was from the previous post. Well, turns out Tuesday was just a warmup for the complete body slam we would be getting on Wednesday. Let me take you back to Wednesday of this week. We got to the boy's room about 8:15 and did our review of their night with their nurses. Henry seemed to be recovering well from his surgery the day before and the drains were working. It looked like Charlie has a slight bluish area on his very low abdomen. The lead resident saw it and we agreed we would let surgery know so they could look at him when they did his drain check. About 15 minutes later the surgery team walked in. The attending surgeon walked in like a game show host all loud and obnoxious and putting on his usual show for whoever he thinks is interested. He checked Henry out and we got our usual spiel from him that everything looked good, drains were working and they were pleased with how he looked.  Excellent news, go Henry!  Then they moved onto Charlie.  When they looked at Charlie they decided to irrigate his drain. Well I've seen how this crew works before and I know that sometimes they have a problem listening to the nurses before they start doing things. I wanted to make sure Charlie had pain meds before they started and that they were being gentle with his tiny broken body. As they started the irrigation Charlie began to desat on his oxygen. His nurse said, "stop let me turn up his oxygen." The arrogant prick that is the surgical resident does not stop. The nurse says again louder, "stop, he needs more oxygen." He still doesn't stop. I hear and see all of this and when he didn't stop the 2nd time I physically pulled him off my child and told him to listen to the nurse and to take time with my child. She finally gets his oxygen back to where she wants it and they begin again. And then it happened. All of the sudden the surgical team backs away and the attending surgeon comes over to David and I. He begins to to talk and tells us that Charlie's intestines came out of his body and were lying on his little baby bed next to him. He tells us this almost never happens. Some other dipshit surgical team member tells me she expected to see this Henry but not Charlie.  The attending surgeon is suddenly not cocky at all. We discuss what they are going to do. He steps out to make a phone call and I talk to Charlie's nurse asking to get more pain meds for him. I look at my sweet broken baby and I see the mess they have made of him and I am filled with such rage I can barely see.   I am so sick with worry and angry and in shock from seeing his intestines next to him. No mother should ever have to see that. 

I forgot to mention that during this time Dr. Marvelous and his team were in the room about to start rounds. Thank God they were there, they help to calm me down. Dr. Miracle is on it and he's talking with the surgical team and protecting my baby. The surgical attending comes back in and says he talked to his chief and they want to do surgery in the room right now. This is where I absolutely lose my religion and tell the surgery team exactly what I think of what just happens. You know that cry you get when you can't breathe and it makes talking difficult? Well that's the cry I got and then I unleashed, in front of the entire medical team. I told the surgical team that they were cocky and rushed and didn't listen to the people who know my babies best and because they rushed and weren't gentle my babies were suffering and I had had it. The surgical attending agreed there were "opportunities"   to learn" from what had happened. Gee, ya think? 

We immediately ask Dr. Marvelous what he thinks and he agrees that this is our best option. Within 30 minutes their room is turned into an OR and they begin the surgery.  It was a quick surgery and Charlie's vitals did great which kind of surprised everyone.  Now we just continue to watch him and let his bowel heal as much as possible. Both boys will need another surgery but the soonest they will do it, unless it is an absolute emergency is 6 weeks. We need them to get bigger and stronger before they are put through more bowel procedures.

 The rest of Wednesday passes in a blur and then suddenly it's Thursday. To be honest, Thursday sucked in a whole new way and I have to get in the shower to get to the hospital so I'll have recount Thursday later. 

(A) 

*David usually edits for me but he's asleep and he needs it so please excuse any grammatical or spelling errors. I just don't have the time to go back through this and correct.*

Difficult Times

Wednesday was another unpredictable and difficult day. Aly's going to give the details in another post. I just wanted to use the blog as an outlet. I have seen from emails and comments that people are reading about what is going on and it's strangely comforting. Hiya Mark. Hiya Magoo. 

It is honestly no exaggeration that I worry every day that the boys are going to die. If we are not at the hospital and the phone rings, we just want to hear that they are alive first, then we absorb whatever bad news follows. 

Doctor; "we are worried about his breathing and his blood pressure so we have changed his ventilator settings and gone up on his dopamine"

My mind; "phew, nobody is dead"

I can't speak for Aly on this, but after each call I take a tiny peek into the abyss and test myself about how I would feel if it was the worst case. Then I look away again and go back to whatever I was doing (usually sleeping) because I can't bear it. Right now I am in the room with them and I can see the machines that confirm with their squiggly lines and big numbers that the boys are ok. Even if an alarm is going off or something is flashing, I know what to look for now to convince myself that they are not going to die from this one. 

All that said, at times like now, when there has been no life threatening changes for almost a full 24 hours, I start to look into the future. Then I look away again and go back to whatever I was doing.

You see, the future is going to be hard for both boys and maybe even impossible for Charlie. You can call me a coward (or encourage me to "be brave") but I am scared and, for now at least, I am choosing to take it one day at a time. 

(D)

December 2, 2013 Super Short Update

Ok guys, here's a quick and dirty update on what went on yesterday. Charlie's head scan came back looking pretty much the same as last week. This is good news but there is still bleeding and it will be a problem. He most likely has a date with a neurosurgeon as he gets older. We will get more detailed information during rounds. Henry has been raising a bit of concern with his tummy. It still looks distended and yesterday I was telling anyone who had the misfortune of running into me that I felt like something was up with his tummy. His Dr. Marvelous agreed and an ultra sound was ordered. The results show some kind of fluid on the right side that forcing all his bowels over to the left. Um, ouch! Surgery looked at him prior to the ultra sound and just thought everything was normal. When they saw the ultra sound (the one they didn't think was necessary)  they agreed something looked wrong. The results are being discussed this morning and surgery could be on the table. So we wait. I'll try and update when I can. 

(A) 

Overview; 2 Weeks Old

The doctors and nurses are fantastic. It's a cliché, I know, but it's impossible to avoid it when you watch them working and their job is to keep your babies alive. Aly and I both have to leave them to it and have the faith that, if one of our boys knocks out their breathing tube, the nurse will be there and it will be put back in again. (In their two weeks in the NICU, they have had to be re-intubated three times. It happens, apparently).

We have got to know these care providers a little better over the time and there have been some conversations where the events that we have written about here have been discussed from their perspective. Aly and I have both been insistent that we "can take it" and would rather hear the truth, even if it is grim, than some sugar coated, overly optimistic pseudo-truth.

Things we have learned from some of our off the record conversations;

• Henry's worst event was his pulmonary hemorrhage
• Charlie's worst event was his bleeding after the drain was put in
• The day Charlie had his drain and bleeding was one of the hardest shifts that his very experienced nurse can remember
• That same nurse thought that Charlie was going to die and the numbers she saw on the labs on his blood were the lowest she has seen, apart from in babies that died
• Our boys are the sickest babies in the NICU in The Pavilion (as I put it to Aly one time, even the people in the NICU feel sorry for us)

I am sharing these grim truths with you because I am very proud that our boys have survived such difficulties and are fighting on. I started writing this post last night and finished it here at my desk at work. Yes, I had to face the reality of life and come back to the office for the first time in several weeks. While eating my sandwich, I decided to finish the post as some sort of therapy. I tell my boys every day that I am proud of them and I will do so again a little later than normal today. In the meantime, this will have to do.

(D)

November 30th, 2013. Part 2; Oh, Saturday - you dark horse

At 1am in the early morning hours of Saturday we got the dreaded NICU call. Henry had to have a new intubation tube put in because his heart rate was low, his oxygen was too high and basically he was just a hot mess of a baby. They had already done the procedure when the sweet resident called, they just wanted to let us know. We got the call at 1:02 and we were in the hospital parking lot at 1:34. We really need to order that "my baby is in in the NICU" siren for our car. Anyway, once we got there we spoke with the nurse and spent the next 2 hours watching Henry breathe and sleep like nothing had ever happened. Once we were convinced things looked as OK as they were going to look, we decided to drag ourselves home at about 3:30am. We got up again at about 6:45 to get ready for the day. My parents met us at the house to drop off some much needed food for us and then we all went to the hospital. The boys were born two weeks ago today. As we were walking into the NICU, we met Dr. Miracle. Dr. Miracle was the Attending on for the day and we knew him well. He had consulted with us multiple times while I was pregnant and he knew our boys very well. He asked me how the Kangaroo Care (when you get to hold your baby skin to skin) went with Charlie the day before. I told him it was nothing short of disaster, that I was pretty sure I had broken my baby and I understood if they never let me hold him again. He just smiled his Dr. Miracle smile and said we would do it again today, that he would make it happen. I quietly thought to myself, "yeah, he's not going to let that happen once he really reads how yesterday went". We walked with him to the room and he assessed both boys. He started with Charlie and he was quite pleased with how old Chuck was looking. Score one for Charlie!! He then announced to all the nurses that I would be holding Charlie today and to page him when we were ready and he would come help. HOLY SHIT, I'M GOING TO GET TO HOLD MY BABY! He then moved on to assess Henry and he got a gold star too. Dr. Miracle explained that what had happened the night before wasn't that uncommon (too much fluid in the lungs), that Henry responded beautifully to the treatment and was now much more happy and comfortable. I'll take that. Surgery came and looked at the boys. Ohhh Surgeons, such special snowflakes. In the beginning the surgeons were, for lack of a better word - and because it's me writing - utter and complete dicks. They were cocky and talked fast and were not real thrilled we had questions. What nerve of us, to question them! I can honestly say I think I wore them down and turned them slightly more human. Now when they come in they know they aren't leaving without a conference with David and me about both boys and every question we ask will be answered in non-surgeon speak or they won't get to leave.  We have tamed the beast that is "The Surgeon". Don't get me wrong, they do great work and we are so grateful for the drains they put in on the boys. So, back to Saturday, the surgeons looked at the boys and were pleased. I even got a thumbs up from one of them as she walked out of the room. Told ya we had tamed them. After they left Dr. Miracle asks if I'm ready to hold Charlie. The nurses aren't thrilled about this. Not because they are mean, but because they know how stressful it was yesterday on Charlie and don't want that again. Dr. Miracle says he has a technique and it will be fine. I get in my chair and the respiratory therapist comes in, Dr. Miracle starts to bag Charlie to bring him over to me and then like magic I am holding my first born son. This time his heart rate is totally normal, he's not turning blue and I get to hold him for an hour and forty minutes. His vitals respond, as the nurse said, "beautifully". She keeps raving about how well he is responding to the Kangaroo Care. My heart is full. During this time, David takes my mom over to Henry and has her hold Henry's hand for the first time, which was a very special moment. After Kangaroo Care is over, I'm told I am going to get to hold Henry too. The bad luck fairy must be out of the office today because this is the best day we have had in our NICU life so far. David and I go to lunch and when we come back I get hold Henry. Henry responded wonderfully too. Vitals looked great and he just slept and cuddled and I read him poems from Where the Sidewalk Ends.  Since holding both boys went so well I'll be able to hold them daily now and they really encourage it. David and I left the hospital around 6:00pm and were in bed by 9 and we didn't get a call overnight! It's about 7:15 now and we will head into the hospital for what we hope is a very boring day of baby growing.

Charlie and me;

Here's Charlie parachuting in; 

Henry and me in the afternoon;

(A)