Happy New Year

As one year ends and another starts, everyone is reflecting. What was the best movie of the year? (Edge of Tomorrow, if you must know... Ok, maybe not the "best" but it is the one I enjoyed the most). What was the best song, etc.  "2014, eh?" as some of my closest friends will have been saying because they have been saying a variant of that for at least 25 years now. As 2013 was becoming 2014, Henry was having a major surgery and was really, really, sick. Aly and I have been doing our share of "this time last year" reflections because the contrast is pretty remarkable. 

The good news is that the reason the contrast is so notable is not only because of how terrible things were (and they were) but how good things are now. Charlie and Henry get the credit for that but Aly and I are grateful every day for the people that have supported them. For example, they have physical therapy and occupational therapy at the house (the therapist work for River Kids, which seems like a really good organization). We really believe that the progress they are making has a lot to do with the help these therapists have given the boys and us. Since the last post, Henry has been crawling all over the place (at first using an "army crawl" with his belly on the floor but more recently getting almost there to doing it on all fours) and he pulls himself up too (a lot, but he seems to prefer to do it on higher risk unstable or otherwise dangerous objects). Charlie is a lot more comfortable on his tummy now than he used to be and moves around by rolling. They even occasionally hang out on their tummies together. 

We also got a chance recently to spend some time with two of the nurses that helped them in the NICU, which led to some reflection about how professional, helpful, compassionate and just great all the NICU people were in 2014. Then there are our family and friends, near and far, that, hopefully, know how grateful we are. 2014 was a hard year for us but, thankfully, we can feel good about 2015. 

The last time I posted, I said that C&H were making new news every day, so let's prove that point with some more catching up. They turned one and we had a little party for them, that we were delighted that all their grandparents managed to attend. We gave them little cupcakes - I am not from the USA so this seemed to me to be a very irresponsible thing to do, but I am happy to take everyone's word for it that everybody does it. (They survived). 

I should also mention that they both wear glasses now. I didn't write about ROP that much because, frankly, it was never going to be fatal. However, Charlie still gets regular treatment for issues with his eyes - and had a surgery in October. Henry has been told he needs glasses and it is better for him to just start wearing them now. 


November also saw a visit from my Mum (and Brian) from the UK. Photo opportunity - first time the boys had both of their grandmothers in the room at the same time. 

Thanksgiving turned into a bit of a happy / sad time. Firstly, let's focus on the happy. If you only know our lives through this blog, then you might not have heard the update to the very sad post we wrote in April. Aly's dad was not given much time to live because his heart condition had deteriorated rapidly and significantly. Well, the amazing news about Thanksgiving was that Rob was not only alive to enjoy it, he is doing incredibly well and is defying all of the odds. He is on the heart transplant list and has a medication plan that is really working for him for now. The sad part I mentioned was that we had big plans to have Charlie and Henry finally meet their twin cousins Laurel and June. Laurel and June arrived in Texas as planned but, unfortunately, their parents got sick and, with a heart transplant candidate and two premature babies planned to be part of the party, it was decided that the sick (well, sick with an infectious disease) people should leave and let the rest get on with it. So, the big family get together didn’t quite materialise, but the boys had a great time anyway. They have seven cousins and they’ve not managed to meet any of them yet. Surely 2015 will fix that.

Another tradition around this time of year appears to be dressing up in embarrassing clothing. So, after Thanksgiving, we took the boys to meet Santa and dressed them up as elves…

 

Then we dressed them up in some sort of Christmas with the Von Trapp children garb;

 

As Christmas got closer, the Christmas sweater was up next;

 

Next up, Santa’s helpers (granted, these outfits are not that embarrassing… relatively speaking) giving Jean a Happy Birthday message. Jean was one of the volunteers that I mentioned here and here that took the photos of the boys.

 

As I mentioned, we were delighted to have a visit from two of their most important nurses. I don’t think we wrote many posts when we were in the hospital that didn’t praise the work of the nurses but in case we weren’t clear – we will never forget all the hard work they put in for our boys. However, let’s not get off track – embarrassing outfits – how about owl hats?

 

Finally, for Christmas morning, let’s all join in and wear matching pyjamas.

And with that, Charlie, Henry, Aly and I would like to wish you all a very happy and healthy 2015. Cheers!

(D)

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)