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)