You Make Me Smile

Have you heard the new Uncle Kracker song, "Smile"?

Don't know how I lived without you

Cuz everytime that I get around you

I see the best of me inside your eyes

You make me smile

You make me dance like a fool

Forget how to breathe

Shine like gold, buzz like a bee

Just the thought of you can drive me wild

You make me smile

The first time I heard it I thought, “Wow, this makes me think of Charlie and Lily.” Then the other day, my mom (whom we call “Crackers” – long story) asked if I had heard “her” new song, Smile. She said, “It makes me think of Charlie and Lily.” So I am now dubbing Smile the babies’ song. And today, as always, they made us smile.

Both Charlie and Lily took their afternoon and evening bottles for us like champs. Their only current problem with the bottles is that they are a little too eager for them now. They get them in their mouths and suck, suck, suck so hard that they sometimes forget to breathe. But hopefully the novelty of the bottle will wear off soon and they will learn to pace themselves a bit. We got to give both babies as sponge bath tonight, which is always fun. We are lucky to get to bathe Lily frequently, but bathing Charlie is a rare treat since it is usually done while we are visiting Lily. But tonight we got to get both babies squeaky clean, dress them and give them their bottles. There’s nothing not to love about bath time – the babies are wide awake, free of tubes and wires, and cute as can be. Plus we get to see both on the scale. Lily weighed in at 4 lbs 10 oz and Charlie at 5 lb 1 oz.

Also this evening, Lily was moved to a new location. A set of twins came in and in order to keep them next to each other Lily was moved to a new corner suite. I decorated her new digs by hanging her cute little signs on the wall next to her and she was all at home in no time. Other than that, no changes today. Both just need to work on their breathing and feeding for the next few days. On Monday they will have another eye exam and on Tuesday they will get their first round of vaccines.

Now, go download the Uncle Kracker song. It’s catchy! :)

This particular outfit requires an engineering degree from MIT to put on; luckily, Lily doesn't mind that all the random buttons, hooks and straps may not be in the right place-- she doesn't need them to look cute!

Charlie has been letting us know when he's ready for his next feeding. He opens his mouth and looks around, as though he's trying to find his bottle!

"By the End of THIS MONTH"

We've been hoping for this... but today we heard it straight from Dr. Hiatt: "we're shooting to have the babies home by the end of this month." There are no words....

Brooke spoke to Dr. Hiatt and his nurse practitioners today and they all seemed to agree that Lily and Charlie are doing so well that they will be able to come home within the next two and a half weeks. And even though Brooke told me this when I spoke to her immediately after school, I still teared up when Dr. Hiatt said the same thing to me when I arrived at the NICU. And I teared up again when I was telling one of the nurses about it. And I teared up again when I was waiting from Uncle John to arrive for his visit. And I'm tearing up again now as I write this.

Of course, we have to temper our excitement with restraint. We know all too well that things can (and often do) turn in an instant. As we saw with Annaleigh, things can look great one day and then suddenly change just a few hours later. So we can't let ourselves get too excited. (I say this and know it to be good, logical advice, but that doesn't mean it isn't happening anyway.)

Both Lily and Charlie continue to do well with their feedings and their breathing. Charlie was able to take his noon bottle for Brooke without any episodes and the plan with him is to only keep him on any sort of breathing help when he eats, which means that he'll be breathing on his own for most of the day! Lily should be able to be put on the Low Flow Cannula within a few days so she's not too far behind her brother.

So all is good today and we couldn't be happier about it. Now we've got to try and keep from getting too ahead of ourselves with excitement for their potential homecoming!


Hopefully there won't be too many more pictures of Charlie with a nasal cannula!


Lily is trying her best to explain to her mommy that she really needs her bottle immediately. Poor Lily. She's got it so rough.


If you haven't seen this yet, NASA just released the latest round of pictures from the Hubble Telescope. The "headlining" picture from the group is called "Butterfly Nebula," and I think it's just so utterly beautiful. I know it's just a coincidence, but butterflies have taken on such a new meaning for us since Annaleigh died and knowing that this is out there somewhere in the heavens makes me happy.

Denied Parole

Poor Charlie. His chance at being sprung from isolation is gone. His first round of blood tests to re-check him for MRSA came back positive. All three of the planned tests had to come back negative in order to set him free, so now he's stuck in isolation for the duration. We really shouldn't be upset since we've been told all along that he would be there until he went home. Up until yesterday, we never even considered the possibility that he could go back out with the regular NICU babies. We still don't even really know what changed and why they were willing to give him a shot. We're just disappointed because we let it get into our heads that he could be outside his tiny room and near Lily, and the idea of being able to be with them both at once makes us both giddy with happiness. Oh well. If this is the last disappointment we have as NICU parents we'll consider ourselves lucky.

Talk now shifts from springing Charlie from isolation to freeing Charlie of any breathing help whatsoever. If things go as Dr. Hiatt plans, Charlie will be breathing nothing but room air like you and me by the end of this week! He's still not bottle feeding too well and his heart rates drop pretty regularly with it, but that shouldn't effect his oxygen intake. We're so proud of him; he's done so well with his breathing from the minute he begrudgingly came off the CPAP. Go chunks!

The big news of the day is in the weight department: Charlie hit 5 pounds!!! And Lily is now 2 kilos!!! Both are huge, huge steps. We've been thinking of the five-pound mark since they were born as the "almost home" point and it is so, so exciting that Charlie is there. Just a few more ounces and Lil will be there too!

Nothing really changed today for Lily. She's breathing great with the reduced settings on her High Humidity Nasal Cannula so we need her to keep that up for a few more days before switching her to the Low Flow Cannula becomes an option. Her bottle feedings continue as they have been. When she's in the mood for a bottle, she takes it like a champ and gulps it down as though she's been starved. But when The Bug doesn't want her bottle, she let's everyone know it and will have nothing to do with it. In a way, her moodiness is a good thing because we know pretty much right away if she'll take the bottle or not. There's a little more of a guessing game with Charlie.

The saddest part of today is that I'm not feeling too well. Sore throat, runny nose... a typical back-to-school gift from my students. So, despite all my constant hand-washing and sanitizing, I seem to have a cold. Thus, I did not go to the hospital at all today. I can't even put into words how sad this makes me. I've not missed a day since they were born and not seeing them today makes me feel so much worse. Hopefully, a good night's sleep will be enough to kick this so I can see them tomorrow.


Charlie seems quite happy in his new "Little Heartbreaker" outfit. How true it is! (Thanks for all the clothes, Cheryl!)


Charlie was more than happy to have his mommy be his exclusive visitor today. He's definitely going to be a mama's boy.


One of our favorite Lily traits is her belly pose. For some reason, she just loves to lay on her back and stick her belly out as far as can go. She even jams her chin down into her chest to give it an added visual effect. It's hilarious! (at least to us)

Free Charlie!

Today we got some exciting news – Charlie may be able to come out of isolation! Ever since he was diagnosed with MRSA, Charlie has been in an isolation room in the NICU. If Charlie were our only baby this would be no big deal – the room is dark and quiet and we love his isolation roommate Ethan and Ethan’s parents. But since Lily is out among the regular population of the NICU visiting can be tricky at times. We must visit Lily first so we don’t spread any potential infection to her, so that means that no matter what Charlie is doing when we arrive, whether he be wide awake, getting a bath, etc., we can’t go into the room or handle Charlie or else we won’t be able to see Lily. This can be frustrating at times since we don’t want to gyp Charlie of any one-on-one time, but we also don’t want to miss out on seeing Lily. Anyway, today Dr. Hiatt informed us that he would be testing Charlie everyday for the next three days for MRSA. If all three tests come back negative, Charlie can rejoin his sister on the outside! The first test was taken today around 3:00 and it takes 24 hours for results to come in. So it’s possible that Charlie and Lily could be reunited by the end of the week. Of course, it’s also highly possible that he’ll still test positive and will have to stay put, but our fingers are crossed for the former.

Charlie and Lily both had pretty good days today. Lily was taken off her caffeine and lowered to 4 liters on the nasal cannula - both positive steps. She wanted nothing to do with her afternoon bottle – she was too busy being mad at Nurse Julia for having the audacity to reinsert the Bug’s feeding tube – but took her evening bottle perfectly. She also enjoyed a nice sponge bath tonight courtesy of Daddy and put on some grams to reach 4 lbs 5 oz.

Charlie did the opposite – he loved his afternoon bottle but was totally uninterested in the evening one. He’s still having brady episodes with his feedings, but we were assured yet again today that this was normal and nothing to be concerned about. Dr. Hiatt said that it was in no way a step backward and was just something that was common in preemies. The bradies seem to be caused by a combination of reflux and some failure to coordinate his sucking, swallowing and breathing when taking his bottle, but both are problems that he will outgrow. Other than his MRSA tests, Charlie will begin getting his first round of vaccines. He also gained weight and is now 4 lbs 14 oz.

Joe and I both visited the doctor today to get some vaccines and flu shots – we want to be as healthy and germ-free as possible when we finally start caring for Charlie and Lily. Those who come to visit the babies once they are home should be prepared to scrub, Purell and perhaps submit to being sprayed down with Lysol.

We realized recently that we have a lot of pictures of us with Lily but hardly any of us with Charlie. And as you can see, Charlie could not be bothered to wake up to pose with us.

Lily was so wide awake tonight and was more than happy to get some snuggles in with mommy!

Lily and her daddy took a pause from her bath to have a staring contest. Lily won.

Proud Papa

I write this with a smile beaming on my face. I am, for the first time, feeling every bit the proud father.

Lily finally took a bottle for me—she guzzled the whole bottle in just a few minutes. This was just minutes after finding out that she has outgrown the preemie diapers! My littlest baby is growing up!!!

Lily was one pound eight ounces at birth and today she weighs in at four pounds five ounces. Her breathing has been steady on very low settings on the High Humidity Nasal Cannula and she may be able to reduce to a Low Flow Nasal Cannula some time soon. She got a quick sponge bath tonight and could not have looked more adorable the entire time. And when I was holding her before her feeding, she was looking at me with her beautiful piercing black eyes and I was just swooning. Every day I think, this is it; I can’t love them more. And then one of them does something and I fall in love with them all over again.

Charlie took a whole bottle for Brooke at 9:00 tonight, but he drank it so fast he had some issues with reflux. This was the third time today a feeding has been followed by a drop in either his heart rate or his breathing. Nurse Mary assures us that it’s something he’ll outgrow somewhat quickly, so we’re not altogether too worried. He’s also doing really well with his breathing and today was put on the Low Flow Nasal Cannula. His settings were so low that he’s barely getting any help at all with his breathing and it’s just a matter of time before he can do it on his own (hopefully).

Brooke went up to visit the NICU by herself in the morning today while I stayed home to cut the grass and do some schoolwork. I decided I would also visit Annaleigh at the cemetery today for the first time since we finalized everything a couple days after her funeral. I got there and was sad to see that all her flowers were dying or already dead. I don’t know why this surprised me since there’s no logical reason cut flowers would last more than a few days, especially when they’re left exposed outside and not cared for at all. I saw them and decided I would clean them up after I sat down to talk to her for a while. But as I was sitting there, I saw that a whole family of butterflies was fluttering around inside the dried up leaves and flowers on her grave. Maybe they were just passing through but I remembered the day of her funeral they were there and Brooke noticed them when we were there after the funeral. So maybe some butterflies have made a home on Annaleigh’s grave. I know it sounds ridiculous but I find this very comforting. I still plan on cleaning up the flowers maybe next weekend but I hope the butterflies decide to stay there anyway.

That’s all for today. Back to school tomorrow, which means back to one visit each day. I’m not looking forward to that, but at least I can see the light at the end of the long NICU tunnel and know that they’ll be home sooner rather than later. Go babies!


Look at Lily's muscles!


Lily just loves Nurse Alicia!


Feedling Lily tonight took about five minutes.


Charlie would happily stay in his mommy's arms all day long.


If his mommy can't hold him, Charlie is happy to cuddle with Nurse Mary. She takes great care of him!


He was sound asleep after his breathing issues tonight but Charlie still looked really cute in his onsie. It has sneaker feet!

Big Babies and Bottles

We mentioned last night in our brief update that Charlie was acting up a bit. Right before we left for the evening on Saturday night he had a few pretty dramatic bradies (dropping his heart rate) that required his nurse Sue to intervene. Since Charlie has not behaved like this in a long time, Sue called the doctor in to check him out. They did tests to check his oxygen levels and to look for infection, but luckily everything came back fine. The doctors eventually determined that Charlie’s caffeine dose needed to be adjusted, and since then he’s been doing just fine. I told Charlie that that was the last of the drama I wanted to see from him. His next traumatic episode could be when he falls of his bike and skins his knees, but nothing before then!

So Charlie had a less eventful day today, which was good! He’s still working on his bottle feeding. He took a bottle for Joe this afternoon – rather slowly and begrudgingly, but he did it. And this evening Sue could tell that Charlie was in the mood for the bottle, so she gave him one and he sucked it down happily. His feedings were upped to 34 ml and today he weighed in at 4 lbs 13 oz. So close to 5 lbs!

Miss Lily is also packing on the grams. Tonight she’s up 65 grams to reach 4 lbs 4 oz after her feedings were increased to 32 ml. She chugged her afternoon bottle like a champ, but wanted nothing to do with her evening one, though she was probably just tired from her bath! Charlie’s nurse Mary was with Lily tonight (Charlie is only a little jealous) and she had Lily all ready for a sponge bath when we arrived. We moved her to an open bed so we could work with her more freely and had a great time washing the Bug and taking pictures with her. After her bath, when she was snuggled up in Joe’s arms, we realized how much she’s looking like Charlie these days! You can definitely tell that they are brother and sister right now.

So both babies are making progress. The goals for the next few weeks are to get them to take all their feedings with bottles and to get off the cannulas and on to room air. I’m sure a busy month is ahead of us.

On another note, I got a tattoo yesterday! Joe wanted to get the babies’ names tattooed on him and I decided that I would do it too. We went to the tattoo parlor, but unfortunately they were unable to tattoo Joe in the location he wanted, so he’s rethinking his plan. I went ahead with mine however – I got three small hearts on the inside of my left ankle. Each heart has one of the babies’ first initials in it and there is a halo over the “A” heart. I really, really like it! And for anyone curious, getting a tattoo does not affect breastmilk. Anyhow, hopefully Joe will decide on something he’d like and we’ll go back soon to get his done.

It's a shame that Charlie can't get comfortable when we hold him.

Uncle John caught a foul ball at a Phillies game last week. He's been carrying him around with him calling him "Fouly" and yesterday he brought Fouly to meet Charlie. Charlie was not impressed.

Lily is most displeased to be getting her feeding from the feeding tube instead of the bottle. She's sucking away on the pacifier and seems quite unhappy that she's not tasting her milk.

Lily loves her little froggy outfit!

Lily just loves to be adored. We must all worship her.

Fickle Babies

Just a short post tonight as we're both very, very tired and in desperate need of some sleep.

Both Lily and Charlie seem to be toying with us when it comes to feeding time. They've both taken entire bottles on multiple occassions but they've both also acted like bottle-feeding is the last thing they want to do. We know it will take some time and we're going to do some research on it as soon as we have some time, but for now we're just going to trust them to let us know what they're ready for.

Charlie's had a bit of a rough night tonight for some reason. His heartrate and oxygen levels both dropped dramatically when he was taking his bottle, and then both dropped again even after his feeding stopped. They're running a few tests just to make sure there's nothing of concern happening (we're especially paranoid about belly issues after everything with Annaleigh). Everyone is pretty confident that it's nothing more than normal adjustments.

Sorry for the lack of pictures... I'm actually posting from the NICU Parent Waiting Room so I don't have the ability to upload photos at the moment. I promise I'll post double tomorrow!