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.