Happy Birthday

i was aware of the concept of a blog around this time last year but, to be honest, I hadn't really read any. Then, in April, having been a blogger myself for 5 months, I heard that the Astros' new pitcher, Collin McHugh had a blog. I read every post - here was a story of how this guy got through the minor leagues and was now getting his big chance in Houston. (He has done really well and I think he is great). However, I was really disappointed that once he did make it to the major league he stopped writing. He admitted that he didn't feel he had anything to write about anymore: that the struggle was his muse. I know what he means. Once Charlie and Henry were home, it wasn't only that I had less free time to write blog posts, it was also that their extraordinary story was now - thankfully - much more ordinary. 

Charlie and Henry turn 1 on Sunday and I am on a plane having had to spend a week in the UK for work. So, with time no longer an excuse, I thought I would write a little something to update people. 

In this post, I will write about the boys - about who they are. Although they are turning 1, their "adjusted age" is 8 months and their progress is measured against that. However, if any of you have interacted with an 8ish month old, you wIll know that a character is clearly forming. 

Charlie was out first, so let's start with Charles. Both of Charlie's grandmothers think that Charlie has special powers. I'm not kidding. Both of them comment about how he appears to have a secret communication link, straight from his soul to the soul of the grandmother that looks in his eyes. It might be simply that they love little Charlie and they know that Charlie has been though a lot and has a lot more to go through. But that is not how they describe it and that is not how it feels. That's too simple. I write about how it feels because I know what they mean. I started the paragraph talking about how "the grandmothers" feel but, I have to be honest, I feel it too. Take this picture for example - who's "got this" in the picture?

Henry II. Henry is charging on. I remember writing that I was worried that Henry was afraid; maybe of the dark, maybe of the new life outside of the hospital. Not any more. He has worked very hard at making up for lost time. He wants to see the world - or, at least, the other side of the room. Henry is our little adventurer and when he couldn't move himself, he wanted to be walked around the house. It seemed that Henry and I were joined at my belly because we were forever walking about, looking at the world. Now, he can roll around and he continues to adventure. When fussy, he still can be calmed with a visit to a new environment (upstairs, for example). 

Both boys had a terrifyingly difficult start to life. All the posts on this blog have chronicled that. However, as their birthday approaches, it starts to feel like old news because they both make new news every day. Charlie makes so many different sounds and reacts so happily to the reaction he gets that it is not going to be long before he says his first word and knows what he is saying. Henry is going to crawl soon - he won't tolerate the frustration he has at the moment (at not having a direct forward motion) for much longer. 

Intensive care was the minor leagues. These boys are enjoying the bigs. 

(D) 

Jeepers Creepers..Gotta fix Charlie's Peepers

We have a couple of updates from our marathon (6 hour) visit to TCH today. Both boys had a pulmonary appointment to do a little check in before the evil virus season kicks in. That appointment went really well. So far neither of them have had any lung issues since being home and nobody is on breathing treatments or respiratory medication. Since they are doing so well we are going to do a sedated lung function test on each of the boys the week of the 20th. The results of this test will tell us how much and how fast air is going in and coming out of their lungs and give us an idea of how well their lungs will handle a cold or common respiratory virus.  We will update after those results are in. This afternoon Charlie had his weekly eye check with the Pediatric Retina Specialist. We have basically been dancing on the edge of surgery for weeks now and unfortunately today Charlie was called to dance. The fibrous growth that is pulling on his retina is now pulling more and we need to act quickly to keep his vision.  I really can't say enough about the ophthalmology team at TCH.  Every doctor, nurse, specialist and scheduler have gone out of their way to explain things and make us feel at ease with the plan of care for our boys. We have been seeing this team every week since Charlie was paroled on April 7th. So while nobody wanted surgery to be the path we had to go down, we completely trust this team that this is the right course to take. Surgery will be Monday morning and hopefully it will be out patient. There are significant risks to doing the surgery which is why we have not gone ahead with it until now. We will keep everyone posted. 

Here's a few pics of Mr. Beans aka Charlie and Mr. Bacon aka Henry. 

  

Tubes and Teeth

It's been a very exciting week around our house. As of yesterday both boys are now g-button free! They have both been eating all their bottles and we hadn't had to gavage in weeks. When we went into the pediatrician for flu shots and weight check I made the case for removal. She asked me if I knew the timeline surgery uses for removing buttons. I said I did and 3 months was just too long. We weren't using them, the boys were eating and it was just time to take these puppies out. She agreed somewhat reluctantly and I actually ended up  taking them out. Something I never thought I would be able to do a few months ago. 

We have started cereal in their bottles to give them some extra calories. They LOVE it. They were so over boring formula it was definitely time to jazz it up. I've been suspecting that we might be starting the teething process and young Charles confirmed my suspicions with the arrival of a bottom tooth.  It's adorable and he's already tired of me pulling his bottom lip down to admire it. In Henry news, he has enough head control to play in his Baby Einstein entertainment center. He is a huge fan and it has opened up a whole new world to him. The boys have started to notice and smile at each other and it's absolutely heart melting.  
I'll leave you with some likes/dislikes and pictures. 

Charlie's likes:
1. The song Say Say Say by Michael Jackson and Paul McCartney
2. Blowing raspberries
3. People's faces. He loves to look at people and smile and see them smile in return

Charlie's dislikes: 
1. Tummy time
2. Tummy time
3. More tummy time

Henry's likes:
1.Food
2. Baby Einstein entertainment center
3. Books

Henry's dislikes:
1. When his food is late
2. Going to bed at night
3. When Charlie gets something before him.

 

Henry Laughing is a Milestone

Henry and Charlie both like to giggle.

What Aly particularly liked about today was that Henry was anticipating what was coming. That is, apparently, a developmental milestone.... and also seriously cute.

Here's the video

While I am on, here's a picture of Charlie laughing at his mommy this morning

(D)

8 Months Old!

I know we haven't blogged in a while and I am sorry to those who have been expecting an updated. We have been busier than usual due to our move out to the suburbs. David is too busy with work to write a blog so I'm afraid you are stuck with me. 

I am so happy to write that the boys are fantastic! They are both almost 14lbs and are taking most of their feeds by mouth. They aren't fluid restricted anymore so if they get hungry in between feeds we can actually feed them. This is a totally new concept for us and we love it. We have never been able to feed on demand and getting to this milestone gives me the warm fuzzies.  Henry is especially fond of having a snack here and there and he's not afraid to let me know when he needs a little something. He reminds us of that Snickers commercial where the tag line is, "You're not yourself when you're hungry." And God help you if you can't get him a bottle in about 2.5 seconds. He unleashes the full on baby of rage. I love this because it means he gets hungry and can tell me. He can eat without issues and he likes it! We worried for so long this wouldn't be the case. So rage on hungry Henry, you will be fed as soon as I can get that bottle warm.  Charlie doesn't have the same love of food that Henry does. Don't get me wrong, he enjoys his bottle but right now he's much more interested in his right hand. It apparently has 4 fingers and thumb that is perfect for sucking. Charlie spends a lot of his free time admiring his right arm and talking to his turtle. The boys are making progress in OT/PT. Henry is holding his head up fairly well and he's giving pep talks to Charlie to do the same. Charlie is having a tougher time holding his head up. We work on it every day and try and do as much tummy time as they will tolerate. They turned 8 months old yesterday, 4 months adjusted. They are both babbling and tracking very well. Last week we were able to stop gavaging them in the middle of the night. They never woke up for that feed so we figured great, we will all sleep through the night. Yeah, that lasted 3 days. They seem to take turns on who gets up to host the invite only all night dance party. Last night Henry was the host and I was the guest of honor. The night before it was Charlie. Their little brains are starting to put together cause and effect and watching that in their eyes is one of the most amazing experiences I've had. There is so much going on in their world right now sometimes it's just too exciting for them to sleep. The new house we moved into has a pool and last weekend we went swimming.  The boys loved it. Henry was so relaxed he fell asleep in his pool float. I love that they aren't afraid of the water and that they enjoy the different sensations they get from floating around. I'll leave you with some pictures of the wee bravehearts. If I've left anything out about how they are doing feel free to ask me. It's been a crazy couple of months so I'm sure I've forgotten something. 

 

Bite Me Salmonella

Well unfortunantly Charlie has been hospitalized for salmonella.  On Monday of this week I noticed he was very lethargic and took his temp. It was 100.2. I know "they" don't get concerned about a fever until it hits 100.4 but I called and we went into the pediatrician. By the time we got there his temp was 103.7.  They took blood and urine but the doctor was happy that Charlie was well profused, pink and angry when messed with. She thought it was probably a virus and we made a follow up appointment for the next day. By the next day Charlie's fever was gone and his tummy issues were getting a little better. I thought for sure he was on the mend as did the pediatrician. Imagine my surprise when I get a call on Wednesday morning telling me the blood culture came back with gram negative rods and we could either go into the pediatrician to get another culture or come to the hospital where it would be processed faster. I chose the hospital because gram negative bacteria is nothing to play with. Babies with gram negative infections can go from absolutely fine and looking great to dead in a matter of hours. Because it's that serious we have been admitted and are currently holding court on the 7th floor of TCH.  It's a big change for me because we are in a private room, not in a pod like we were in the NICU. I hate it. I'm only leaving Charlie to get food and bring it back to the room so I feel a bit like a prisoner in solitary confinement. The nurses and doctors here have been wonderful and are patiently and thoroughly answering all my questions that I pepper them with every time they come in our room.  One of our biggest questions has been, how in the hell did Charlie get this? Nobody can give us an answer and the doctors have said we will probably never know.                                                                                                                                                                                                                                                                                                                                                                                                                                                   The good news is that Charlie's body was doing a pretty bang up job of fighting this off pre antibiotics and he didn't get ill to the point where intensive care was required. As I was writing this one of his doctors walked in and we have a new plan. The bad news is that he has to do 10 days of IV antibiotics. This is according to my good friends in Infectious Disease. This was an "unofficial consult" so we don't have to do what they say but, I trust that group and I'm glad we got their opinion, unofficially.  The good news is that Charlie will be getting a Picc line and will be able to do the 10 day treatment at home. We will closely monitor him and if there is any hint that he's heading down hill we will come back here.  So, that's our Charlie update.  Henry has been home with David and I know Henry is in heaven having his daddy all to himself.  I'll leave you with some pictures and an apology for any punctuation or editing errors. That's just what happens when I write blogs. 

(A) 

How are the Boys?

They are super, thanks for asking


A number of people got in touch to say that they liked the blog to continue so I am going to try. Without a team of nurses helping, I don't have the same amount of spare time for writing. Also, there's not the same day to day change with them. In the hospital days, there seemed to be something to report on every single day - a new setback or a new milestone. These days, we are just happy parents of twins (with a lot of doctor's appointments!).

So, given that it's not very interesting to write (or read) about feeding schedules and such, I hope that I can keep you entertained with the occasional photo shoot. As you might gather, I like to take photographs of them.

(D)

'Cause You've Got...

I said that I might stop with the blog posting. Once the boys were out of the hospital, there was a logic to that being the end of the story. If it doesn't stop then, when does it stop? I don't mean their life story, of course, I mean the scary story about having premature babies.

It doesn't matter. If I am in the mood to write about the boys and you are in the mood to read, then the blog continues, I suppose.

I wrote to a stranger earlier this year. She had written a blog about her premature baby. One of the things that she said to me was that nobody expects much of a baby so I should enjoy this time fully. In the future, there may be measurements. I think I would have been enjoying this time anyway but I am happy to have the reminder filed away for when needed.

So, let's all focus on now. Charlie and Henry are an absolute joy and they've got (altogether now Showaddywaddy fans) personality. I think it is impossible to know when we start to form our personality. While the boys were in hospital, Aly and I worried a lot about how it was affecting them. It was one of the many reasons that we loved having consistency in their nurses. If there was any chance at all that they were feeling sad or lonely and we weren't there, it felt much better knowing that the faces that came to comfort them were familiar ones. As you probably know, Charlie was home first and it is hard to disconnect that fact from the fact that he seems the more laid back of the two. I have shown this photograph a lot, but it really does capture how they were when it was taken, very soon after Henry was home.

Henry has relaxed a lot more since then but he still often wears a look of suspicion where Charlie seems more ready for the next adventure. Here's what I mean;

I think Henry's suspicious face could be used to define a new international scale of suspicion. Here's what I suggest;
At the top of the scale is "no good is coming from whatever that is over there"

Then there is "I am not sure what that is... We should keep our guard up"

On the low end of the scale is "this might be fun... But let's see, shall we?"

Another explanation is the photographer, of course. Here's one that his mom took;

Charlie's equivalent scale would be of anticipation. Starting at "alright, count me in";

Then "I can't wait for this to start"

At the top; "Wooooo!"

(D)

A Wee Update on the Wee Men

Things have been really busy at the Fitzy pad.  We have an appointment of some sort 5 days a week and often times we have multiple appointments each day. That doesn't leave a lot of time for updates but it's been brought to my attention (gives the side eye to Casey) that we haven't updated folks in a while.  

Charlie: His weekly eye appointments continue to go well and that bastard ROP hasn't shown back up. He has OT two times a week and PT three times a week.  We love his therapists and they are very impressed and encouraged by how much Charlie is progressing. His PT says he is a very determined and hard working baby.  We are still working on getting him to take all of his feeds by mouth. We are still gavaging the majority of his feeds and we recently switched to a more broken down formula to mix with the breast milk in hopes that will help him feed better. Friday we get an ultrasound of his testicles to see if he has hernias and if he does he will have to have them repaired in the next couple of weeks.  This week Charlie's hobbies are: listening to music and pretending to conduct an orchestra, cuddling with his stuffed bunny, batting at his toys, reading books and of course swinging in his swing. Things Charlie does not enjoy: being ignored, the hours between 7-9 pm, tummy time and having his blood pressure taken. 

Henry: Henry had a pulmonary appointment today that went quite well.  He no longer shows signs of pulmonary hypertension and we don't have to go back to see that crew until October. Henry hasn't started PT/OT yet but I'm hoping he starts next week. He's having eating issues as well so we are gavaging most of his feeds as well.  Both boys have reflux but Henry has it worse. We are trying Zantac to see if that helps, so far my vote is no. I am happy to say that it appears sweet Henry has overcome his fear of the dark! He's also sleeping much better through the night. He's a pretty a cool cucumber until he loses his pacifier and then you had better  buckle up. This week Henry's hobbies are: staring at all of the ceilings everywhere we go all of the time, looking at those around him suspiciously, listening to music-he prefers classical, rolling his eyes at Charlie and enjoying time with his pacifier.  Things Henry does not enjoy: being separated from his pacifier, his reflux, loud noises and surprises. 

I leave you with some pictures and much love from the Fitzies 

(A)

Henry

We think that Henry might not like the dark... Or quiet. It isn't the most controlled experiment in history, though. 

When he is awake, Henry mostly looks shocked or suspicious. 

This one is just cute;

(D)

Charlie

Charlie - show Daddy your surprised face

Charlie - show Daddy your pensive face

(D)

It is Really Happening

Charlie and I spent Friday working from home while Aly went to the hospital with the intention of taking Henry home. Our day was great. We played the facial expression game;

Charlie - show Daddy your worried face

Charlie - show Daddy your sad face

Quite the character actor is Charlie. 

In the meantime at the hospital, Aly was being told that they had decided to do a test on Henry that ran the risk of him not getting out. She felt that the hospital needed to go to the corner and think about what they just did. 

By all accounts, Henry's last day at the hospital wasn't an easy one. Here's what Charlie thought about it;

The good news is that Aly did take Henry home. 

Here he is looking around at his new surroundings. Notice where the tape was from his cannula? Yep, Henry is on room air again!

So that's it. They're home. 

This might be my last blog post.

(D)

Let's Try this Again

I just talked to Henry's nurse and we are all systems go for discharge from the hospital tomorrow! Henry will be coming home on the tiniest whiff of oxygen to help his lungs continue to repair themselves after the virus from hell. I am BE-SIDE myself with excitement at having both my wee boys home.  It feels like baby Christmas over here today. I'll be up at the hospital tomorrow to take him home while David waits at home with Charlie. Speaking of young Charles, he's doing pretty well. He's had OT and PT this week and is making nice progress on holding his head, tracking and rolling. Charlie does not appreciate his new work schedule as he would prefer to lounge in his swing or my arms all day.  He had several appointments this week all of which went very well. His ROP continues to be under control. He's gaining weight and we are upping his feed volume every two weeks starting next week. I'm very pleased to say that Dr. Perfect Beard the neurosurgeon has said he doesn't need to see Charlie any more. This doesn't mean there aren't still issues with his brain, it just means it looks like we dodged the need for a shunt. We will do another update with pictures once Henry is home. 

(A)                                                                                  

Henry Still Fighting On

The combination of Henry in the hospital, Charlie being fed every 3 hours, work, normal life makes it trickier to keep our blog up to date. Henry is still in. It is a slow process getting better, we have learned. However, his steps remain in the right direction. 

Here was Henry at the weekend, when his temperature was up a bit so he got to go streaking. Down by his belly button you will see his G-button. It is a feeding port that both boys have and I will write about sometime. 

(D)

Poor, Poor Henry

Another short update.

Today, Wednesday, Henry is needing a bit more oxygen again, sadly. As routine a virus as this is, it seems Henry is struggling to get rid of it. It's so frustrating. When the boys were first born and put on ventilators, one of the early goals is to get the oxygen support down to 21%, or "room air". We were very proud and relieved at how quickly both boys got there but it was Henry first. I have felt for a long time that Henry was ahead in the breathing game. He was first to 21%, first to come off the ventilator, first to come off CPAP. So, it seems so strange to me that it's breathing that is keeping him in hospital. We have always been told that their lungs were weak, so I shouldn't feel this way... but I do.

Charlie, on the other hand, is a delight. We have to feed him at 1am and 5am but he sleeps when we leave him to.

(D)

Breathe in the Air

Henry is off the vent again. For now, he is on a nasal cannula to continue to give his lungs some support. However, that they took this step is another great sign that he is getting better.

Meanwhile, Charlie is doing well at home. Feeding well and being a delight.

(D)

Grandad Rob

Aly's dad, Rob, was already a grandfather to twins when Charlie and Henry came along. Laurel and June are the boys' little cousins and they live in Florida with C&H's other cousin on that side, James. Despite this learned expertise, Rob, like the rest of the world, felt unable to help poor Charlie and Henry while they were stuck in hospital and, instead, supported from the sidelines patiently waiting for them to get strong enough to get home, when all the family could really start making tangible contributions and relationships. 

Sadly, Rob's time is running out and, as if this whole story wasn't tragic enough, Rob is going to die before the boys get to know what a fantastic Grandfather they have. 

We wrote earlier about how quickly Henry's illness took over him and there is a parallel in Rob's story. Rob has had heart problems for over 20 years but in the last few months things have moved to a whole new level and now have plummeted to this point, where Rob's medical care is now palliative. Rather than "just" having a device to help his heart, Rob's condition has, this year, started leading to failure of other organs, including his brain. Due to the vascular dementia, Rob now has very few lucid moments. This rapid decline has taken the whole family by surprise and the new reality everyone is living with is that we only have three weeks left with Rob.  Charlie and Henry will never know their granddad. It's heartbreaking to write that but it's true. What they will know is how happy their Granddad was when he found out they were coming and how excited he was to be a Granddad to two babies he watched his daughter and son in law work so hard for.  Charlie and Henry will always know how proud their Granddad was of them. 

Aly's family asked us to post about Rob to let people know his situation.  We had alluded to it but felt the time was right to let people know the gravity of the situation.  We went up to see Aly's family today (Sunday) and Charlie was able to come along. Henry is still in the hospital but is improving and we hope to have him off the vent tomorrow.  

(D&A)

Henry in the Hospital

It's Saturday. I am at the hospital to see Henry. My mum has Charlie and Aly is at her parents' to see her dad.

I wrote about Charlie yesterday so today is a Henry update. The doctor who examined  him is confident that he is getting better and that is a great relief to hear. He is still very sick but this is the first time in days that we have not been told that he is getting worse.

Henry went from nearly leaving the hospital to being on a ventilator in less than a week.
The support needed for his lungs has gone from nothing, to some oxygen through a nasal cannula to the high flow nasal cannula and, eventually, to the nuclear option, the ventilator. 

They stopped his feeds (so he is back on TPN with Omegaven), they moved him to an isolation room (a long way from the door, to extend that metaphor) and he had a terrible time getting the tube down his throat because his airway was swollen from the illness.

But they think he's getting better.

Part of the reason that the doctor feels he is getting better is that the settings on the ventilator that he needed yesterday are looking like they are too much support today. There are also some good signs in the test results.



(D)

Charlie at Home

With all the stress of Henry's health having such a rapid decline, some of you may be worrying that we are not getting to enjoy our darling Charlie being home again. 

I have been trying to work from home because Charlie had some appointments and Aly and I didn't want Henry left alone. Mum is a great help to have but she can't drive in the US and we aren't set up for her to agree / sign on our behalf. So, Aly has been at the hospital, waiting, watching and worrying while I get the significantly less stressful task of helping Mum with Charlie. Thursday was a pediatrician visit (mandatory after leaving hospital) and having an occupational therapist (OT) visit the house. Starting life on ventilators and in a hospital bed most of the time is not ideal for their development. We tried our best but, at home, we are taking all the help we can get to help them develop. So, Thursday was OT and Friday was Physical Therapy (PT). 

Here is Charlie in his workout clothes, waiting to get started. I think he's not so sure about this...

Later, Charlie and I did some "Tummy Time" exercises. It was great but, eventually, Charlie let me know he was done for now;

(D)

Parainfluenza Type 3

They worked out what Henry has. Parainfluenza virus. We have no idea how. Honestly, if I wasn't also Charlie's dad, I would be suspecting the baby that left then came back. Thankfully, Charlie is showing no symptoms. 

There is no treatment for Henry so we have to wait and hope he can fight it off. To make sure that he is getting the best lung support he can get, they have put poor Henry back on a ventilator. 

(D)

Henry is Very Sick, Charlie is Home

Today started with a call from the NICU telling us that Henry needed more oxygen. He has been on an increasing amount of support for over a week now. The diagnosis of pneumonia caused by him aspirating was not sitting well with us this morning and I decided to go in to the hospital and listen to rounds. 

The team were thinking the same. The antibiotics probably should be working by now so maybe it is a virus. Labs were taken and a full viral panel is being done. We are waiting to see what comes back. Tonight, the antibiotics were changed with the assumption that if it is bacteria, it is resistant to what he was on. 

In the meantime, he is critically ill and all we can do is try and support him. It is terrifying. 

Charlie is home. Everything went fine with his tests and he was released. As you can imagine, there was no party or ceremony. I drove him home, dropped him with my mum and headed back to the hospital. 

(D)

April, You Are Not Our Friend

Well April started out as a month we thought would bring us the joy of bringing our healthy babies home and never returning to the NICU as patients.  Oh how wrong we were.  Henry began coughing yesterday and today the coughing got much worse. We did an X-ray because we suspected he aspirated sometime late last week.  The X-ray showed we were right.  Henry now has pneumonia from the aspiration and is now on another antibiotic for at least seven days.  He's not allowed to feed by mouth until further notice.  

Charlie had another eye exam today and the doctor didn't see any new ROP growth so he gets an eye exam reprieve until Thursday. Charlie was about to be released when I noticed that he was desatting into the upper 80's...a lot. I watched it for a good 15 minutes and then asked the nurse to call our NNP and let her know. Both the NNP and our Neonatologist came over and looked at Charlie. They saw the desatts and there was enough concern to keep him from being discharged. I called about an hour after we left the hospital to check and he had had a spitting up episode where he bradied and desatted and had to be suctioned. Charlie will be getting an OCRG test tomorrow to try to see what is going on.  He's also having an MRI tomorrow.  Normally he would have gotten the MRI before he was discharged back on April, 7th but he had to wait until 8 weeks after his PDA coil surgery to have it done. 

All in all I really hate April. April has been nothing but a month of teasing us with hope and then ripping it away. It's frustrating and painful right now. Having Charlie home showed us just how babies thrive when they are at home and in a normal environment. It makes us worry even more about our boys continuing to be in the unnatural NICU environment. But with all their issues, the NICU is exactly where they need to be.  We are heartsick, tired, worried and perplexed by what keeps getting thrown at us.  At this point all I can say is April, you are not our friend. 

(A)

Moving Closer to the Door

In an example of real life imitating metaphor, Charlie and Henry are moving closer to the door. When Charlie left, we did a bed shuffle where Henry moved to Charlie's old spot. This freed up Henry's location for the son of the nice family that I mentioned in the post the other day. Their boy is going to be there for a while so Aly wanted them to have the "prime NICU real estate" that is Henry's old spot. Henry's new bed is, you will have guessed, closer to the door. Not as close as Charlie's new spot, though, which is literally the bed nearest the door. 

Charlie's eye doctor seems quite pleased with how Charlie's eyes are doing and if the exam on Sunday looks good, he is going to be comfortable with Charlie being seen as an out patient. 

Henry, meanwhile, is on an antibiotic that everyone is confident will take care of the infection. He is getting some extra oxygen through a nasal cannula and we have been told to expect him to need that for a while. So we will get training on using oxygen at home. Henry has bronchopulmonary dysplasia (BPD), sometimes called chronic lung disease. So does Charlie. It is very common in very premature babies. Unfortunately for Henry, he has had a late regression of his disease that was probably brought on by the infection. The good news is that we are assured that as he grows it will go away and, in a few years, his lungs will be normal. 

So, we didn't quite make the target of both boys home by Easter. Let's see how we do with both home by Mothers' Day (US version). 

(D)

Penny Lane

One of the many books I have read about The Beatles makes the point that "there are few more LSD-redolent phrases in The Beatles' output than the line in which the nurse 'feels as if she's in a play'... and 'is anyway'". This week has felt a little like a hallucination. Having Charlie home with us was filled with moments of disbelief. I hate being a cliche but we really didn't let ourselves believe it could happen and then it did. 

When I took the day off to take him to his out-patient appointments, it was full-on proud daddy, normal baby stuff. When the day ended up with me checking him back into the NICU it truly felt like a trip. I felt like I was watching the scene play out - but I was in it. 

The hospital was fantastic about it. Charlie is next to Henry and has the same doctor and it is as convenient for us as a family as it could possibly be. 

I mentioned before that Henry had an infection. It has set him back a long way and it is truly shocking proof to us how badly infections will affect our boys. His infection was in his scar where he had abdominal surgery but the symptoms were all in his lungs. He is back on a nasal cannula to get him extra oxygen. Looking at it from a a bad luck point of view, he had an infection that turned out to be resistant to the most used antibiotic for that infection. From a good luck point of view, this time in the hospital has shown how fragile Henry is and made sure that, when he comes out, we know how to care for him. 

(D)