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)