Charlie is Home!

While it didn't exactly happen in the way we had hoped or expected, Charlie is finally home from the NICU! On day 95 of his life, our little chunkers is home!

We knew the babies homecoming would be soon. We hoped that both Lily and Charlie would be ready by the end of the month, but Lily seems to want to take a few more days with her favorite nurses at the NICU. And even though we really wanted both babies to come home at the same time, there was no reason to make Charlie wait around any more. So around 2:30 this afternoon, when it became obvious that Lily wouldn't be ready any time in the next couple of days,we found out that Charlie would be discharged in just a few hours!

The suddenness of it was a bit jarring. We kept feeling like "we aren't ready," when in reality we've been ready for a long time now. So once we realized it was happening and rushed to do a little last-minute prep work at home, we raced to the NICU to start the discharge process with Charlie.

Other than a little car seat strap issue, the process was pretty smooth. We got some instructions from the nurses about basic care and feeding. We were given appointments for different doctors (one appointment was for six months from now!), specialists whom Charlie and Lily will need to see. We said goodbye to a couple of Charlie's primary nurses (Nurse Sue was off today but she came in just to see us off-- seriously, how great is she???). And that was it. We were ready to go.

We drove home without any problems, somewhat surprised that Charlie's apnea monitor didn't ding at all. We got home to find that Brooke's mom had decorated both the front of our house and inside it. Roy Kitten greeted us at the door and scowled at his new competition for Brooke's affections. I took Charlie on a brief tour of the house while Brooke prepared his first "home cooked" meal. We fed him and burped him and he's currently happily resting in his pack and play and sucking on his pacifier.

What an odd feeling. Charlie is home.... After three months in the NICU, after six months of pregnancy issues, after nearly two years of trying to have a baby of our own, we finally have a baby in our house. Wow. Surreal is the only word that even comes close to describing this.

With a little luck, Lily will be joining her brother here at home soon. She had some pretty serious heart rate drops early this afternoon. She recovered fine but she has to show that she has no episodes for at least a full 24-hour period before they'll let her go. It was hoped that she would be ready to go tomorrow and we planned on bringing both babies home together tomorrow, but since that wasn't going to happen we couldn't leave Charlie in the NICU when he was ready to go. Luckily, Lily's nurses will take good care of her and make sure she gets home as soon as she's ready. But you can't rush a pretty girl!


Finally.


As you can see, Charlie is just over-the-top excited to be home... really...


I have already started my new role. I'll be heading up the Cuddles and Naps Division. Brooke will handle everything else.


Brooke picked out a sporty outfit for Charlie to wear home, but then realized that he would need something warm to go on top of it. This was the warmest thing we had. It was just a tad too big for him, but I can't wait for him to fit in it because he'll look like the kid from Where the Wild Things Are.


Just because she's pretty, here's a picture of The Bug.

Tasting Menu

Today Lily sampled the third formula of her NICU stay – hopefully third time’s a charm! The results of Lily’s PCG test showed nothing other than the three brady/apnea episodes she had yesterday evening, which were attributed to reflux. In order to help her in that area, her nurse practitioner Marilyn suggested that we take her off the Similac Advance formula and try her on Enfamil AR, which is thickened with rice cereal and therefore heavier, preventing it from coming back up so easily. As always, Lily gets half formula and half breast milk each feeding and is taking about 55 ml per feeding. She started the Enfamil this afternoon and so far so good. We’re hoping that the formula, along with reflux precautions such as keeping her head slightly elevated after feedings, will prevent any further episodes. If the Bug can behave she can come home soon, so our fingers are crossed! Between sampling the NICU menu options Lily managed to take and pass her car seat test – yay Bug!

Charlie also began taking the Enfamil AR today – not because he necessarily needs it but because we want to try to keep the babies on the same formula if at all possible. The Chunks didn’t seem to mind the switch – as long as he has a full bottle and a good cuddle afterwards, Charlie is happy. This evening his nurse, Debbie, gave him a nice tub bath. Charlie is so funny during bath time – he cries like crazy when he first gets in the tub, then after a minute it’s like a switch is turned and he realizes, “Hey – I like this!” He is so, so cute!

At home we’ve been working on getting everything prepped for the babies’ hopefully fast approaching homecoming. Bottles have been sterilized, clothes have been washed, bassinets have been assembled, diapers have been stacked. Our house looks like a Babies R Us exploded, but that just makes us happy. All we need are two babies in it and our home will officially be complete.


Lily knows that black is the new pink.


Snug as a bug in a rug.


A tub full of Charlie.


This is the life.


Just soaking up the suds.

We're Trained!

Good news: we now know how to use our monitors!

Brooke and I (and my parents and Brooke's mom) got trained on how to use the apnea monitors that both Lily and Charlie will be on when they come home. We also learned how to use the oxygen tanks (just for emergencies) and how to perform infant CPR. Surprisingly, it wasn't all too hard. We were warned that it would be overwhelming but (maybe I'm being naive) it all seems doable. So we have all the monitors and are now only missing the babies to which the monitors need to be attached. Soon enough...

Both babies are doing well. Lily got hooked up for her PCG test around noon (the test runs for 12 hours so we won't know results until the morning). We already know that she had three brady episodes after a feeding but her nurse attributed them to reflux. If there's nothing else and the test doesn't show any major issues, she will have her car seat test some time in the middle of the night. Once we get the results from all of these tests, we'll be able get a better sense of exactly when she be discharged. Let's keep our fingers crossed that she aces her exams!

As for Charlie, he's pretty much holding steady. He hasn't had any major issues today and really just needs to show that he's not going to back-swing and he'll be ready to come home soon. Honestly, it seems to us like he's ready to roll but the doctors are just being extra cautious with him since they want to send him home at the same time as his sister.

So we need now to be patient and trust that Lil' will do well with her tests and be ready to pack her NICU bags soon. Go babies!

Happy 3 Months! (And some love for Annaleigh)

Charlie and Lily are 3 months old today! Happy ¼ Birthday, sweet babies! I brought in cookie cakes to the nurses to celebrate. I took it upon myself to write a little message on the cookies, and my handiwork left something to be desired. But I’m sure they still tasted good. Someday Charlie and Lily will be able to celebrate with sweet treats, but today they celebrated in their own little ways.

Today Charlie took and passed his car seat test! And he did it without even studying for it! After his morning bottle Charlie was placed in his car seat for 1 hour to see if he could tolerate it without having any episodes. He did so well and was so comfy that his nurse let him stay in the seat for an extra 30 minutes. Way to go Charlie! After his test, Charlie was treated to a nice warm tub bath! Well, it may have been more of a treat for me, but Charlie seemed to enjoy it too. For the first time I did the entire bath all by myself from start to finish and it was so great. Once he was all clean and dry I dressed him in his new little “Mom’s All Star” baseball outfit – he looked so cute! Within the last few days Charlie has outgrown his preemie clothes and moved into newborn sizes. This is very exciting – and an opportunity to put Charlie in a whole new batch of adorable outfits. This evening Joe weighed Charlie all on his own – the Chunks put on 50 grams to reach 6 lbs 4 oz.

After another good day, Lily was moved back into her open crib and is doing well. The new formula seems to be doing the trick for her and she was happy, hungry and alert this morning. She gnawed on her fingers like she was starving as I tried to take her temperature and was thrilled to see her bottle. This evening she was treated to a nice daddy-daughter cuddle before eating like a champ. Tomorrow she will have her PCG test (aka the Hannibal Lector test) so the doctors can get a better idea of her behavior and hopefully get an idea of when she might be able to come home.

Tomorrow is a big day for Joe and I – we have our monitor training. The babies will both be coming home on monitors and tomorrow is the day when we learn how to use them. My mom and Joe’s parents will be joining us for the class so that they will know what to do if they are ever watching the babies.

Now, it’s time for some thank yous. It seems that this blog has become almost as much about our gratitude as it is about the babies – and that alone makes us thankful! But we need to say a special thank you today to all the people who made donations to St. Peter’s in memory of our beautiful Annaleigh. At the end of Annaleigh’s obituary we requested that in lieu of flowers donations be made to the St. Peter’s NICU. We expected that they would receive a few hundred dollars in our little girl’s honor. Instead, to date they have received over $2,100! We are overwhelmed and so grateful for all the support still being given to us. We are also amazed by the number of names that appear on the donation list that we do not know. Aside from many wonderful friends and family members who have made donations, it seems that several blog readers whom we have never even met have made donations for our baby as well. One reader, Jaimie W., sent a letter along with her donation that truly touched our hearts. I cried while typing it up for this post – it is so beautiful and makes me so proud to hear yet again how Annaleigh touched so many lives during her all too short one. I’m publishing Jaimie’s letter below because of its beauty and because of all it stands for. Thank you, Jaimie, and thank you everyone.

To Whom it May Concern:

I am writing this letter as an explanation of my donation. Enclosed you will find a personal donation. This donation is being sent in honor of Annaleigh Lucy DiGiuseppe.

I do not know Joe or Brooke. I will never meet either of them. I will never know how beautiful Annaleigh was. I will never see Lily or Charlie grow and become strong. I heard of their story through a website and couldn’t help but get drawn in. As I read their blog the night Annaleigh died I couldn’t help but cry. I wept for the sweet little girl whose life was not supposed to be ending. I cried for the immense pain her parents were feeling. I was incredibly saddened by the fact that her brother and sister would never get to know her. I am not a religious person, I do not go to church, and I rarely pray. But that night I stayed up all night praying to God to hold Annaleigh safe and to provide strength and comfort to her family.

I cannot pretend to know what the family has been through. I cannot imagine the pain of losing a child, especially one so young. I can only lend my sympathy and donate some money to help the amazing people who have helped them. It is very clear that the staff at St. Peter’s has gone above and beyond to help the DiGiuseppe family and to love all three of their children. I can only hope that if I ever found myself in a similar situation I too would be blessed with angels to love my child.

Annaleigh will forever be loved and never forgotten.

Sincerely,

Jaimie W.

The Ride Isn't Over Yet

We've been through a lot in our three months at the NICU (well, three months tomorrow, anyway). We've had highs-- the day Annaleigh's bed was moved to between Lily and Charlie and all three babies were in a row was my personal favorite-- and we've had lows-- you know this already. But the hardest part of all is the suddenness with which things turn.

Yesterday morning, we were excited about how soon we'd have the babies home. It was only a matter of days, no longer a some distant future too far away to be real. Then Lily had her rough day and we were forced to consider that it may be a bit longer. Today, Lily had a great day and we were happy. But then Charlie had a few brady episodes in a row, and once again, we're discouraged.

Lily's formula was changed to a lower-calorie brand and her feedings were reduced to about 45 ml. This change seems to have worked well as she had a perfectly good day. Both Brooke and I got to spend some quality time with The Bug and give her lots of cuddles.

Charlie had a good day too, at least until around 8:30. For some reason, his heart rate dropped considerably out of nowhere. He came back up without much stimulation and his nurse Natalie attributed it to reflux, but why he had reflux over three hours after his feeding is anybody's guess. He bradied again during his 9:00 feeding and took a few minutes to regain his normal levels.

It wasn't the worst thing in the world, but it was disheartening. We really needed to have a good day today after all the worry over Lily yesterday, and we were so close to getting it. Charlie was even supposed to have his car seat test tonight (all the NICU babies need to be tested in car seats for an hour after a feeding to make sure they can handle it before they're allowed to be discharged) but that's been postponed.

Hopefully, tomorrow will be a little better. Lily should be back in an open crib and Charlie may be able to have the car seat test. But for those things to happen, both babies need to have good days. Keep your fingers crossed for that!


Charlie sleeping peacefully (between bradies, unfortunately).


Charlie on the scale getting weighed. He's up to 2810 grams (6 lbs. 3 oz.).


Lily loves her mommy. And in case you can't tell, her mommy loves Lily too.


I can't even say how great it feels to just pick up a baby and hold her and kiss her and love her. So... perfect.


Lily telling us all about her day.

Lily's Rough Day

Well, we’ve had too many good days in a row, it seems. And Lily does so love drama. Today she took it upon herself to remind us all that we’re not out of the woods just yet.

After her 9 a.m. feeding, Lily had some very serious breathing issues. According to Nurse Linda, Lily’s heart slowed significantly and her oxygen levels shot down. While this sort of thing isn’t uncommon, it is very uncommon in how long it lasted and how serious it got. Linda had to rush to get Lily some oxygen and shock her heart rate back up (not literally “shock,” just some pinching on the feet and arms). It was quite serious and the doctors were called in to check things out. Numerous tests were done and nothing significant was found in terms of infections or blood count, but the situation was serious enough to warrant a return to Intensive Care. Thus, Lily’s stay in the Step Down Nursery lasted all of two days.

The Bug settled in and had a good day. She was happy and ate well and seemed completely normal. A second round of bradys and desats around 6 p.m. then followed, this time less intense than the first but more unnerving since Brooke and I were both present. After consulting with the doctors, Nurse Linda assured us that the most likely cause of Lily’s issues is gas. She was switched to a different formula (which is mixed with breast milk) just a few days ago, so it’s possible that her stomach isn’t too fond of it. It’s possible that this formula is giving her gas (which we know to be true) and that she’s just really uncomfortable. When she tries to poop out the pressure in her belly, she strains her muscles, can’t poop (because the pressure is just gas) and her heart slows. It’s pretty normal for babies to have issues with breathing and heart rates when they have gas pains, so if that is the cause she will be just fine as soon as the gas goes away. To that end, they’ve changed her formula to a lower-calorie brand and reduced her feedings a little. Hopefully, this should do the trick.

While Lily was having her issues, Brooke realized that Charlie was going on 48 hours without any bradys. And about 20 minutes after she told me of this fact, Charlie bradied as if on cue. And as if to support the issues that Lily is having with her gas, Charlie immediately followed his heart rate drop with a giant poop. His nurse said he was just straining to get it out that caused the brady. Other than this one quick and explainable incident, Charlie is going strong. He’s eating well and growing strong and he really couldn’t possibly be more loveable. As a matter of fact, Charlie’s nurse Sue bought him a book called “I Love You Stinky Face” today and has been calling him “Stinky Face” for a while now. His previous nickname from Nurse Sue was “Charlie King of Farts,” so I guess this is an improvement.

After running out for a quick pizza during shift change, we returned to the NICU to find a number of our nurses gathered around us. They had gotten together and bought for us two of the best bassinets available. These women, who give so much of themselves to our babies and go out of their way every single day to make our lives so much better, spent their hard-earned and well-deserved money on such a thoughtful gift for us. There really are no words to express our gratitude to these saints. Thank you Tina, Carlota, Linda, Mary, Sue, Alicia, Cathy, Marissa, Cyd, Cindy and Jane. You really are the best!

PS: Sorry for the lack of pics. Brooke left the house for a morning visit but ended up staying all day because Lily needed her. I was planning on going home after school and heading up to the NICU tonight (with the camera) but instead went right there (with the camera still at home). I know a day without pictures is a sad day indeed; know that I am sorry.

6 lbs. of Charlie!

Tonight Charlie tipped the scales at 6 lbs. Both babies have been gaining weight nicely since their feedings have been increased and we are excited to see Charlie reach this milestone. Lily is hurrying to catch up with her brother and hopefully she will hit the 6 lb mark soon. Aside from the weight gain, everything today is status quo. Both babies are doing well and settling in to their new digs. Lily is getting comfy in the special care nursery, and now that his roommate Ethan has gone home Charlie has moved to the isolation room across the hall to share with a cute little girl named Kassie. Charlie is quite the ladies’ man, so this arrangement makes him happy.

The babies enjoyed an afternoon visit from their Uncle John, during which Lily was all alert and wide-eyed and Charlie amused his uncle by chugging his bottle and working on a good poop. Before John came to visit I filled Lily in on the current plot of Gossip Girl – I know she will want to watch it with me when she gets home. She’s that kind of gal. I’m not quite sure which show Charlie and I will watch together – I watch a lot of TV, but Charlie doesn’t strike me as a fan of America’s Next Top Model, Grey’s Anatomy may be a little graphic (and just may reawaken some repressed NICU treatment memories), and we certainly don’t want him following any of the weight loss tips given on the Biggest Loser. I’m thinking Top Chef will be a Charlie/Mommy show – food is always a winner with Charlie!


Lily and her daddy, happy as can be.


Charlie is so happy to be in his mommy's arms that all he can do is sleep.

Lily Steps Down

Today was a big day for Lily Bug – she moved from the intensive care nursery to the special care nursery! This is a baby’s a last stop before leaving the NICU so we are so excited to see her there and we are so proud of her. She’s been on room air consistently now for almost 24 hours, so that is a big step too. We think Lily has gotten tired of hearing about Charlie’s progress and is ready to give him a run for his money.

As for Charlie, this evening he is getting his PCG test. For this test, Charlie spends 12 hours on a super-sensitive monitor that records all his desats and bradies. This test is most often given to determine whether or not a baby needs to go home on a monitor. Charlie and Lily are both getting monitors automatically, since Charlie is on caffeine and both had very low birth weights. So in this case the PCG test is being used to show the doctors just exactly when Charlie has episodes and hopefully figure out pattern to his behaviors. It won’t necessarily help anything, but it’s good to know. We got quite a kick out of the monitor though, as the set up required Charlie to wear a probe and tape on his face making him look like Hannibal Lecter. He enjoyed his evening bottle with fava beans and a nice chianti.

Both babies had their hearing tests today and passed just fine. Another check mark on their “To Do” list for making it home.

Today was also a big day for Charlie’s isolation roommate Ethan. After almost 5 months in the NICU, Ethan went home tonight! Born at just 23 weeks, Ethan is a true miracle who beat all the odds and is now a beautiful, healthy boy. Over the past several weeks we have grown close to Ethan’s parents, and it was hard to say good-bye to them tonight. But it was so wonderful to see them preparing Ethan for his trip home – I can only imagine how wonderful they must feel. So, good luck Ethan! You are an inspiration and we will never, ever forget you!


It's only milk in his bottle, despite what Hannibal Charlie may prefer.


Yup. She's a daddy's girl!


The Bug has the sweetest, most precious face when she's sleeping.

Remembering Annaleigh - One Month

Today marks one month since we lost our beautiful Annaleigh. I would like to tell you that it has gotten easier, but that is just not the case. Well, maybe it has gotten a little easier. Maybe we cry every other day now instead of every day. Maybe I only feel like I let her down 95% of the time instead of 100% of the time. But we certainly do not miss her any less. There's also a level of guilt that's been added to the mix, the one that comes with each realization of things that will be easier with two babies as opposed to three. We no longer need to buy a larger car. We won't need as much help with the babies and won't require anyone to stay over and help with nighttime feedings. It will be easier to find a caregiver when I go back to work.

Each time one of these thoughts pop into our heads we feel terrible. However, we often get the feeling that in some way our little Annaleigh left this world to help us out - that she sacrificed herself in order to allow us to be better parents to her brother and sister. And that is how we most remember our sweet girl - as our tiny hero. Brave, strong, selfless and noble - a better person in just 8 weeks than most of can hope to be in our entire long lives.

Shortly after Annaleigh's funeral we received a card in the mail from one of Joe's former students, Casey. She had written a beautiful poem in memory of Annaleigh. On the one month anniversary of her death I think it is appropriate to share it with everyone - I truly hear Annaleigh's voice speaking to me as I read it. Thank you, Casey.

I will still remember you
As I look down from up above

As I see you, may family

As I feel your warming love

I will still remember you

And the encouragement you gave me every day

You might not know this but

It helped me grow strong in many ways

I will still remember you

As I look down and reminisce

About all the happiness you brought me

And all the kisses I'm going to miss

I will still remember you

As I fly with the angels up above

As I watch over you, my family

As your guardian angel of love

I know you will remember me

As I watch over you each day

You will always be on my mind

As I watch my brother and sister play

I will still remember you

But how could I forget?

You two gave me the most beautiful life I could ask for

Despite this mournful sunset

I want you to remember me

With each rising and setting sun

I will still remember you

As you could be replaced by none

I will still remember you

As I look down from up above

Waiting for you my family

The ones I truly love

Repeat

We debated titling tonight’s post “See Last Night’s Post” and leaving it at that, since everything is pretty much the same today as it was yesterday. But that seemed like slacking, so here we are!

Things with Charlie are pretty much the same. He is still having his brady episodes, although he only had a few today and they were not as dramatic as last night. We’re finding that these bradies happen mostly when he’s trying to burp and are most likely related to reflux of some sort. I brought in some of the Avent bottles I have at home that have lower-flow nipples in hopes that they will help a bit, so we’ll see. I’ll ask the doctors more about this tomorrow, but most likely we need to just wait for him to grow out of them. Otherwise, Charlie is good! He’s been eating like a truck driver – today he ate between 80 and 90 ml with each feeding. These big feedings are helping him gain weight – tonight he was 5 lbs 10 oz. Charlie also enjoyed hearing us read his new book, Goodnight Ocean, which was a gift from two of his favorite girls, Nurse Mary and Nurse Carolyn. Mary goes on vacation after tonight, and there’s a chance that by the time she gets back to work Charlie will be home. It was hard to say goodbye to Mary tonight – she has been instrumental in Charlie’s success in the NICU and is a wonderful person. We are so grateful for everything she’s done for our Charlie, and we hope we can keep in touch with her. Charlie will miss her for sure, and so will Joe and I.

Things with Lily aren’t quite the same as yesterday, as she is no longer entirely on room air. Sometime during the night yesterday her oxygen level began to drop – nothing bad but lower than the doctors like to see it, so they gave her back her cannula. She’s not on it all the time, rather just when the nurses think she needs a little break. The rest of the time she’s doing the work on her own. The Bug was super wide awake tonight which made for a fun visit. She was quite hungry when we got there and chugged her bottle quickly. Right now Lily gets 40 ml a feeding but definitely seems like she could eat more, so tomorrow I plan to see if they can up her feedings a bit. After she ate, Lily looked at all the pictures in Goodnight Ocean, borrowed from Charlie, then eyed up everything that was going on around her in the NICU. She was a curious bug tonight!

In other news, Joe got the babies’ car seats installed in my car today with the help of our friend Gerry. It’s exciting to have the seats in – we can’t wait until our babies are in them!

Also, huge congratulations to my best friend Colleen and her husband Joey. Their new baby boy Danny was born Friday night and joins his brother Jonathon and sister Caitlin, officially making them a family of 5! We’re so happy for you, and Charlie can’t wait to meet his new buddy.

Lily's Big Day

The Bug is bound and determined to do everything she can to beat Charlie home. Around 9 a.m., Lily is off the nasal cannula! And she's taken every feeding for the last two days with her bottle! Both are huge steps!

Her breathing has been strong for a while but the nurses and doctors kept wanting to wait to remove the cannulas until her feedings were more under control. Well, since her feedings seem to be better than ever, the time for the cannuals seems to have passed. We were with her until after 9 p.m. and she seemed to be tiring a little after her latest feeding and had a few minor, self-correcting episodes. There's obviously no guarantee that she'll be able to sustain the room air breathing through the night, but hopefully she'll be able to make it. If she can, she'll be able to move into a small crib and leave her isolette behind, just like Charlie.

Nothing all too interested happened with Charlie today. He's still struggling with his reflux after meals. Again the nurses have assured us that it's all normal but it is somewhat disheartened that it doesn't seem any better yet. There are numerous possibilities for what can happen. He could get better on his own within a few days. He could need to have his feedings modified and slowed down. He could ultimately need to go on some kind of medication to help control it. There's no telling right now what will happen, but obviously we're hoping he'll be able to resolve it soon.


Charlie was wide awake and looking cute, even though he was having some major reflux issues this evening.


Charlie seemed fascinated by his mommy's face tonight. He just wanted to keep staring at her and watch her face. I've been there, Charlie. I've been there.


Lily has had all the drama she can handle for one day! How could anyone want to cover this face up with tubes??

Goodbye Tubes?

It’s been well over 24 hours now since Lily has needed her feeding tube. She’s happily taken all her feedings by bottle every chance she’s gotten and hopefully she’s not looking back! This evening she was a very sleepy Bug during her 9:00 feeding but she still managed to take the whole bottle for her mommy. What a good girl!


Charlie had a good day too. He’s about the same as yesterday as far as his feeding/breathing issues but every one of his heart rate drops was self-limiting and he was able to bring himself back to normal very quickly. He was wide awake for his mommy this afternoon and happily sucking his thumb when I visited him in the evening.

We signed the consent forms today to have Charlie circumcised, possibly as soon as tomorrow but more likely sometime Monday or Tuesday. It’s a pretty routine and harmless procedure and we didn’t really hesitate about getting it done. We’re happy that he’ll have it done now so the nurses in the NICU can look after his “recovery.”

Two of Charlie’s primary nurses, Mary and Carolyn, surprised us tonight with gifts for Lily and Charlie. They gave us a bib and a book for Charlie and two small memory boxes—one pink and one blue. They, along with Nurse Sue, gave us a memory box after Annaleigh died and we loved it so much and put a lot of her things in it. Knowing this, they bought us boxes for our other two babies. They gave us this tonight because it’s Carolyn’s last night for a couple weeks and Mary is going on vacation after Sunday, and there’s a chance that at least Charlie will be home before they come back to the NICU. Lily’s nurse Julia is also on vacation and may not be back before The Bug is home. This is a surreal feeling. We’ve spent so much time with these wonderful, wonderful people and the realization that we may not see them again is quite shocking. We have such genuine gratitude and love for them that it will be very hard to really say goodbye when it’s finally time to bring our babies home.

Now we just need everyone to keep improving. Both babies are big enough to come home so we just need the other issues to settle down. Charlie needs to get his heart rate drops under control and Lily needs to keep up the bottle feedings and get off the cannula. We can finally see end of our journey in the not-too-distant future!

Story Time!

After getting blood yesterday, Lily has rebounded well. She’s taken four feedings in a row with her bottle (as of 9 pm) and had a lot more energy and color in her face today. She also got a course of diuretics to help reduce her fluid levels. Now we just need her to keep this up and continue bottle feeding without any breathing issues. Hopefully, the cannula will be a thing of the past very soon.

Charlie continues to excel with his feedings and his breathing. He very much seems to like eating as much as he wants and tonight he took 65 ml for me (by comparison, he was getting 35 ml less than a week ago). He had a few episodes after his feedings today but nothing that indicates any serious problems. Most likely, the frequency of his episodes will continue to lessen and he won’t need any specific intervention other than some added caffeine, which was restarted today. That’s not a big deal though so nobody is particularly worried about it.

We also had story time today. Both babies had their very own stories read to them tonight. Lily was read Ten Little Ladybugs and Charlie heard the first half of Cloudy with a Chance of Meatballs. As you can see from the pictures below, both babies were fascinated. Really.

And that’s it for today. Nothing major but since both babies are doing well we’re very happy.

Sleepy Bug Gets Some Blood

Just a short post tonight to keep everyone posted. We contemplated not posting but thought that people would assume something was wrong rather than that there's not too much to report.

Lily had to get some blood today. She's not sick or anything; rather, she's been a bit tired and lethargic for the last few days. Her blood test numbers were borderline but since we need to get her some energy so she can more easily take her bottle feedings the nurses/doctors decided to give her just a small transfusion. Hopefully this will be the boost she needs to get back on track.

Charlie is doing great on his room air breathing and limitless bottle feedings. He doesn't have as many episodes during or after his feedings, though they do still occur every now and again. But once he gets that stabilizes, there's nothing to stop him from coming home!

Today the nurses asked us about setting up a time next week for monitor training. We need to learn how to use the monitors that Lily and Charlie will be coming home with. We've been assured that they're not complicated so it shouldn't be too difficult. In a way, it's a bit of a relief that they'll be on monitors because we'll be alerted immediately if something is wrong. Granted, we're expecting numerous false alarms and we're sure that our hearts will drop every time we hear the bells sounding, but it's still nice to know that we'll know when a problem arises.

PS: Sorry for the lack of pictures today. I was only at the hospital for a couple hours today (Back to School Night put a damper on my visiting schedule) and Brooke understandably doesn't like to lug the camera with her when she's by herself. Don't worry though, I promise to take lots of good ones for tomorrow's post!

Cannula Free is the Way to Be

As of 6:00 AM this morning, Charlie is on room air! He needed the cannula for a few minutes here and there throughout the day during his feedings, but for the most part he is breathing entirely unassisted and doing great. Lily is currently rocking the low-flow cannula and word is that she may come off it tomorrow or the next day to join her brother in the world of room air. She is especially looking forward to having people be able to gaze upon her beautiful face with nothing obscuring the view.

Feedings are going well. Charlie has been doing so well that he is now allowed to eat his fill (today he took about 2 ounces each feeding!) and will eat every 4 hours as opposed to every 2. As of yesterday we are alternating the babies between breast milk and formula, as I am weaning of the pumping. Both are doing just fine with the formula. In fact, Charlie has decided he prefers it to the breast milk that Mommy worked so hard for. This afternoon I was feeding Charlie his bottle of breast milk. He would get so excited to see the bottle and would eagerly take a gulp, then make a face, wiggle his head around and spit out the milk. After several minutes of this, his nurse Sid and I decided to try to formula on him, as his night nurse Sue had indicated that he was loving the formula. As soon as I gave Charlie the formula he perked right up, grabbed the bottle in his little hands and went to town on it. Stinker.

This evening we had a nice visit with both babies. Joe and Lily had some nice daddy-daughter time that involved cuddling and a bottle feeding. She was nice and awake and she and daddy had a nice chat before feeding time. This morning she wanted nothing to do with the bottle I was offering her, but tonight she drank the whole thing for her daddy.

Charlie and I hung out in the tub – well Charlie hung out in the tub while I scrubbed him down with his special Burt’s Bees shampoo. The entire time he was in the tub Charlie was smacking his lips and sticking out his tongue – he was so hungry! So hungry in fact that by the time he got his bottle he kept dropping his heart rate because he couldn’t pace himself – he was so anxious to get the food down. After a few minutes he settled down, found his rhythm and slurped every drop of his bottle. At least he was hungry enough to drink the breast milk! After he ate Joe read Charlie Where the Wild Things Are, borrowed from Charlie’s roommate Ethan. Charlie enjoyed the book a lot, mainly the parts that mentioned supper. We decided we needed to get some food-related books, so tomorrow I plan to pick up Cloudy with a Chance of Meatballs for the Chunk.

Both babies received two vaccines today and will receive three more tomorrow. They were very brave while getting them, but of course a few little needles don’t really faze them after all they’ve been through the last few months. They also both gained weight – Lily is closing in on the 5 lb mark with a weight of 4 lbs 13 oz and Charlie is 5 lbs 5 oz.

After my morning visit I spent the afternoon starting to organize my shower gifts. Wow, did we get a lot! After unpacking everything I had an overflowing laundry basket of clothes for Lily and Charlie, a big bag of toys and every cool gadget and contraption a baby could need. These babies are going to be so spoiled – but they deserve it!

Lily explains to her mommy all the drama of her day.

Charlie was quite comfy in his bubble bath. So comfy, in fact, that created some bubbles of his own (if you know what I mean).

Movin' On Up!

Today Charlie moved to an open crib! Since he has been taking all of his feedings by bottle for the last 2 days he no longer needs to be in the isolette, which was necessary to hang his feeding tube. So early this morning Charlie got settled in his new big boy bed. It’s so exciting to see him all out in the open, and it’s nice to be able to walk in and scoop him right up without much effort. Now that he’s in his new digs, the next step is for Charlie to come off the cannula. The nurses are working on alternating Charlie between the cannula and room air, and hopefully it won’t be long before he can ditch the cannula entirely.

Lily also made some great progress today – she moved from the high humidity to the low-flow cannula! So far the Bug is doing extremely well on this and is on a very low setting. We are quite proud of our little girl! Lily is taking the bottle a few times a day, so her next goal is to be able to take all of her feedings by bottle and move in to a crib of her own.

Both Charlie and Lily had follow up eye exams today, and both are still showing some unresolved issues due to their prematurity. These issues can be corrected with laser surgery if need be, but Dr. Hiatt assured us that in most cases they resolve on their own. They will both have another exam in 2 weeks to see how things are looking.

So it was a busy day for Charlie and Lily, but was full of positive steps forward. Now they just need to keep up this momentum until their next move is out of the NICU and home with us!

Daddy reading Lily "But Not the Hippopatamus," which just happens to be her mommy's favorite book ever.

Seriously, could Charlie be any cuter?

Baby Shower!

Today was the baby shower that almost wasn’t (does anyone but my mom and me remember the old TV special, The Halloween That Almost Wasn’t? I loved that movie…). Holding the shower today was not an easy decision to make, but now that it is all over I am glad we went through with it. We had such a nice morning!

About 50 of our friends and family gathered at a local restaurant for brunch. Baby balloons floated around the room and the tables were decorated with boxes of pink and blue M&Ms with Charlie and Lily’s name and birthdate on them. In lieu of favors, cards at each place announced that a donation had been made to the St. Peter’s NICU in Annaleigh’s memory. An enormous (and delicious) cake sat in the front of the room proclaiming “Celebrating Charlie and Lily.” And the presents – oh, the presents! I don’t think I’ve ever seen so many gifts in one place. It was overwhelming!

The shower began with the food – heaping plates of eggs, bacon, sausage, potatoes, pastries, French toast and pancakes were delivered to the tables and everyone dug in. After we ate, my sister ran a few fun games where guests had to unscramble the baby word, finish the nursery rhyme and guess the number of candies in the baby bottle. After the games, it was time for presents! Gift after gift was passed my way and everyone oohed and aahed over each adorable item. Aside from the wonderful practical gifts we received (pack n’ plays, diaper champs, monitors, high chairs, etc.) we also received a ton of cute clothes, baby toys, books, and even some Halloween outfits. My favorite gift of the day though was not even a shower gift – it was a belated birthday present from my friend Lauren. She gave me a silver key chain with the word “Mommy” and the babies’ names, “Charlie, Annaleigh, Lily,” engraved on it. So sweet!

So the shower was a great success. Thank you Mom, Jill and Anne for all your hard work in making the day so special. And thank you to everyone who came and spoiled me, Joe, Charlie and Lily so much – we are so grateful for your support and love. And thank you for all the loot – it took four SUVs to bring everything back to our house, and our office is now crammed with goodies. I need to get organizing!

But our day didn’t end with the shower! After we finished dropping our gifts off at home Joe and I headed up to the NICU to see Charlie and Lily. Miss Lily was our first stop and she was one sleepy bug. The doctors thought that Lily was worn out from all her recent bottle feedings, so they decided to give her the day off from the bottle so she could rest, with the exception of one feeding done by Joe and I. So for our late afternoon visit the Bug snoozed, but when we came back after dinner she was wide awake and ready for her bath, which was extra luxurious for our princess thanks to the Burt’s Bees shampoo given to her and Charlie by nurse Alicia. I bathed Lily, and then she hit the scale (up 45 grams to 4 lbs 11 oz) and got dressed in a clean outfit. The whole time we were dressing her Lily was smacking her lips and sticking out her tongue, clearly looking for her bottle. We fed her at 9:00 and she drank the whole thing down happily – then went back to sleep, of course!

Charlie wasn’t too tired for his food! He chowed his 6:00 bottle for me, and then did the same thing with his 9:00. In fact, right now Charlie doesn’t even have a feeding tube in! He’s been taking the bottle exclusively for all his feedings since yesterday! We’re hoping he can keep this up and the feeding tube will be a thing of the past. Once he’s entirely on bottle feeds he can come out of the isolette and into a big boy crib - another step on the road home.

Tomorrow Charlie and Lily will have another follow up eye exam, and on Tuesday they will get their first round of vaccines. We’re hoping for a busy week full of progress for Charlie and Lily (and lots of smiles and snuggles for Mommy and Daddy!).

The cake - gigantically delicious!

Just look at all those presents!

Everyone enjoying their breakfast.

Opening up presents with my "helper," Joe.

Some cute outfits for Miss Lily.

Anyone want to come help me organize?! Oh, and Uncle John -get ready to assemble, assemble, assemble!

Charlie, free of tubes!

Lily waiting to be pampered.

11 Weeks Old

Today Charlie and Lily are 11 weeks old! We celebrated with the weekly reading of Birthday Monsters and two nice visits. I went up to the NICU this morning and got in a good cuddle with Lily. We spent the morning in her new corner location, but then in the afternoon she was moved back closer to her original spot, since I was concerned about her being too near a drafty air vent in the new location. He newest spot is right under the clock smack in the middle of the room, where the Bug is sure to get plenty of the attention she loves! My morning visit with Charlie consisted of him chugging his bottle down without any episodes and then snuggling on my shoulder until it was time for me to leave.

This evening Joe and I returned together just in time for Joe to give Lily her sponge bath and for me to see Charlie being super, super cute on the scale. Joe fed both babies their bottles and they both drank them down quickly with no problems.

While I was in the NICU this morning, Joe went to the cemetery to visit with Annaleigh. Since he knew that all the flowers from her funeral would now be gone, he stopped and picked up a bouquet of pink and white roses for her. When he arrived at the cemetery he was of course not surprised to see all her funeral flowers gone. He was, however, surprised to find several butterflies still lingering on Annaleigh’s grave. Every time we’ve been to the cemetery we’ve seen butterflies, but we always assumed they were attracted to the flowers. But today, there they were, flying around Annaleigh without a flower in site. We are convinced that Annaleigh is sending us these butterflies as a sign that she is happy and at peace. We think that Annaleigh always knew that her time in this world would be short because she had more important things waiting for her, and she wants us to know that she is okay and doing her new job – watching out for her brother and sister. We love you so much, baby girl. Even though you are gone, you continue to amaze us.

Today was also had a very nice experience with another triplet mom, who reached out to us after stumbling across our blog. She had triplets in the St. Peter’s NICU last summer and it turns out that she had many of the same primary nurses we have now and a lot of similar experiences. She offered to give us several baby items that her girls had outgrown so we went over to her place today to pick them up. We got to see her three beautiful 15 month old daughters, heard about their time in the NICU and got some valuable advice. She also gave us an adorable pink and purple exersaucer, some bottle proppers and two play mats. Thank you so much, Elena! It was great to meet you and I hope we can keep in touch!

On another note, tomorrow is my baby shower. It was originally scheduled for June 20th, but was cancelled when my water broke on June 18th. We seriously considered cancelling this shower as well given the events of the last few weeks, but in the end we decided to go ahead and have it – Charlie and Lily deserve to be celebrated. So tomorrow morning we will be enjoying brunch with our friends and family in honor of our babies. It’s a baby shower month – my friend Sarah had her shower today (it was so nice!) and my friend Colleen will have hers in two weeks. Not to mention that my friend Lauren had a son two weeks after our babies were born, my best friend Colleen is due with her third next month, my friend Daniela is due in November, my friend Jill in December…Charlie and Lily will be surrounded by friends forever!

Poor Lily. There are constantly people trying to admire her. Whatever is a girl to do?

Charlie put on a very Lily-like performance tonight while he was getting his bath and his weighing. Sometimes they really look a lot alike.