100 Days and Due Date

Today was a big day for Charlie and Lily – it marks their 100th day of life, and also the date on which they were “supposed” to be born. Our goal was to be out of the NICU before both of these milestones were reached and we did – by just one day, but we did it! Since the babies have reached their due date, I thought I’d take a moment to explain the babies’ biological age vs. their adjusted age, since several people have asked me about this recently. Although Charlie and Lily are biologically 3 months old since they were born the end of June, developmentally they will be judged by their adjusted age, or the age they would be if they were born full term. So although they are 14 weeks old right now, they are expected to only be doing the things a newborn would be doing. When they are six months old they are expected to be functioning at the level of a three month old, and so on. So with things like rolling over, sitting up, walking, etc. Charlie and Lily will most likely accomplish them three months later than their biological age would indicate. Most often, by the time they reach the age of two, premature babies catch up to their biological age and function like full term children. In order to make sure that theh babies are on track for their adjusted age and to see if there are any developmental issues we should watch out for, Joe and I contacted the state's early intervention program and someone will be coming by to evaluate Charlie and Lily some time soon. So happy 100 days Charlie and Lily - or, happy birth day - however you want to look at it!

Lily celebrated her 100th day with a trip to the pediatrician. While there, Lily peed on the office scale and pooped her diaper on the examining table. Such class! Aside from these faux pas, Lily had a good visit. She rolled around on the table all wide eyed and was perfectly calm as the doctor poked and prodded her. She will go back for another appointment with Charlie next month, then again shortly after that when the babies get their first Synagis shot, which may help them from contacting RSV.

Charlie stayed home with Daddy while his sister was out on the town (or out on the exam table) with Mommy. In the evening both babies got tub baths and cuddles with Crackers (Grandma Pam).

Last night was our first night with two babies in the house, and we didn't do too badly. We tried to each handle a late night feeding with both babies solo, and while we did okay it wasn't exactly efficient. There was always something small for the other person to handle (Lily woke up before Joe could finish feeding Charlie at 2 a.m., and then Charlie woke up and needed to be changed while Brooke was feeding Lily at 6 a.m.) Tonight we're going to try each being responsible for one baby throughout the night - we'll get up more often but will be awake for a shorter amount of time, so hopefully that will help. It's hard to to go back to sleep once you've been awake for 2 hours!

Now Lily is crying to be fed and Joe is in the midst of feeding Charlie, so I'll be signing off. Now that both babies are home and Joe will be returning to work on Wednesday our free time is going to be extremely limited. We will still be updating the blog (we could never stop!) but it will most likely be a few times a week rather than every day. Please stay with us - Charlie and Lily love your support :)


Charlie doing his exercises.


The Bug after her bath.


Charlie looks so happy to have his tush cleaned.


Soundly sleeping together. It was most likely during this nap where the mysterious tiny cut on Charlie's nose originated. We're assuming Lily's fingernails got him during one of her many arm flailings.

Homecoming Queen

After hearing my pleas yesterday to make it home before her 100th day, Lily decided that enough was enough: she was ready to come home. So this afternoon, we said our goodbyes to the NICU and brought our little Bug home.



We had a bit of a scare this morning though. Brooke called to the NICU to check on Lily to see if today was the day. The Bug hadn't had an episode since Friday so things were looking good when we went to sleep last night. We were excited and we were pumped, but we also knew that it Lily isn't completely over her reflux issues. And sure enough, Nurse Julia told Brooke that Lil' had a minor episode with her morning feeding. It wasn't serious (but none of her episodes have been "serious" for quite some time) but it happened and it couldn't be ignored. Fortunately, everyone at the NICU agreed that it was nothing more than reflux and it wouldn't effect her at all-- they were still letting her come home! We were nervous about this since we didn't want her to come home before she was ready, but they all assured us that she would be just fine here at home. We simply need to make sure that she's inclined a bit after each feeding for a half-hour or so. And since she's on a monitor anyway, we'd know if there was a problem.

And so, Brooke and I drove up to New Brunswick for the last time (of course, we'll have to go back for doctors appointments and such in just a couple weeks, but you know what I mean). We were thrilled that Lily was coming home, but we both feel a great deal of sadness to be leaving, too. The people we've met at St. Peters have been amazing. They not only took care of our babies but they became our friends. They understood exactly what we've been going through. They knew the emotional toll this takes on us as parents, and they went out of their way to do whatever they could to make sure that our babies were treated as well as any babies have ever been treated. Lily and Charlie owe their lives to them. Brooke and I owe our sanity to them. We will be grateful to all the people at St. Peters for the rest of our lives.

And as Brooke just said to me right before I started typing this, the NICU was our connection to Annaleigh. It was the only home she ever knew, and going there every day was a way of keeping a connection with her. The thought of not going to the NICU tomorrow is actually not as joyful as we thought it would be.

But on to happier thoughts. When we brought Lily in the house (again decorated by Grandma Pam, aka "Crackers"), the first thing we did was introduce her to Charlie. I like to think they instinctively know each other already but seeing them together for the first time was something we've been looking forward to for a long time. And as we brought them outside to take a family picture in front of the house, a few butterflies were flying above the flowers in front of us. If you've been following our story for long, you know what that meant to us. You'll understand why we both shed a few tears at that.

So far, Lily's first day at home has been just as we hoped: quiet. Both she and Charlie have taken their feedings well and napped between them. Roy and Roger and Tucker have all seemed perfectly okay with this second new addition to our home, so that is one less worry.

Thanks to all people gave us suggestions about Charlie's sleeping habits. Fortunately, he had a fantastic night last night. He slept until his 1 a.m. feeding and then was wide awake for an hour or so afterward. Once I swaddled him and brought him upstairs to his bassinet, he made a quick stop to lay in bed with his mommy and then slept soundly until Brooke woke him up for his 5 a.m. meal. Then he slept for another hour on his own before Brooke decided to make a run at my job as the head of the Cuddles and Naps division. I woke up at 8:30 a.m. to find that she had put Charlie on her chest and fallen fast asleep on the couch. That was a nice sight.

Tonight we'll have to find a rhythm for feedings and all the accompanying fun. The goal is to see if one of us can handle the job alone while the other sleeps. We're really hoping we can do this because we'll need the rest. In any event, I'm sure it'll be an eventful night!

Suffice to say, it's been a busy day but a good day. We are beyond happy to have our babies home with us and we are looking forward to a lifetime of fun!


Our family!


Poor Brooke has to snuggle with TWO babies now. She really looks like she minds, huh?


Together at last

'
This is Charlie at 1 a.m. Exactly nothing happens in the video besides Charlie making faces. I'm sure that nobody besides me and Brooke and maybe our parents will find it amusing, but I sure do love it!

Getting Settled

Today was Charlie’s third full day home and we’re doing our best to get him all settled in to a routine. Right now I feel like Charlie isn't sleeping very well. It seems as though he's simply taking little cat naps here and there but not really settling in to a restful sleep. Joe suggested that Charlie might sleep better if he was swaddled tightly (for some reason we hadn't been doing that) so after his 12:30 AM bottle last night Joe swaddled him up before putting him in the bassinet and Charlie slept for about 3 hours - his longest stretch so far. But after that he went back to the little naps. I think this lack of solid sleep is making him tired and perhaps that is why he hasn't been taking his bottles as well. I feel as if he's not taking as much per feeding as he was in the NICU and he seems so pokey with them, sometimes taking over 45 mintues from start to finish. Many people have suggested to me that Charlie is just getting adjusted to his new surroundings so I'm hoping that's all it is. Any suggestions or experiences?

Aside from these few concerns, things with Charlie are going well. Our dog Tucker met Charlie yesterday and so far the two of them are doing well together, meaning that neither is all that interested in the other. We took Charlie for his first walk this afternoon since the weather was so nice. I pushed Charlie in the stroller while Joe walked Tucker. Tucker had a grand time. Charlie slept. Maybe that's the key to him getting some good rest.... My mom came over this evening to visit with Charlie. She came over with my sister on Thursday, but her co-worker had been sick so my mom did not hold Charlie just in case she was carrying any germs. So tonight was her first time holding him and she enjoyed every second of it. Charlie seemed to enjoy it too - he snoozed contently in her arms the entire time.

Our love bug Lily had a good day. She was super wide awake during my afternoon visit today and her wide-eyed gazing attracted the attention of many of the nurses and doctors. At one point she had three nurses standing over her telling her how beautiful she is. No wonder she doesn't want to leave the NICU - who would want to give up consant adoration? I promised her that we would adore her just as much at home! But in the NICU she is a princess - a fact that was reinforced by her nurse Julia today, who came across a little pink princess crown headband and bestowed it on the Bug. Lily loved wearing the crown and showing off her royalty status to the world.

Tomorrow will mark Charlie and Lily's 99th day of life. We have talked for a long time about wanting to make sure that they didn't hit triple digets while still in the NICU. We made sure to tell this to Lily so she can get her tiny butt home!


Charlie and his Crackers!


The Cuddles and Naps Division is going above and beyond its duties.


This is quite different from the previous visits with Lily; she was wide awake and happy to show off her beauty!


Princess Lily!

Waiting on The Bug

Apparently, Lily just loves the NICU. She loves her nurses and she loves the doctors and she loves that she is currently the oldest baby there (actually, the 2nd oldest baby there is only half Lily's age, so it's not even close). She's not doing anything terrible, but she just can't seem to go 24 consecutive hours without having a brady episode. She had two today: one early this morning and one after her noon feeding. Both were very quick and she didn't need any help getting her heart rate back up, but they won't release her until she can go a day without one. Dr. Hiatt optimistically assured me that she'll be ready to go within a few days-- we really, really hope he's right. We love having Charlie home but it would be so much better if his sister were here too!

Speaking of Charlie, he's getting somewhat used to things here. He had a better night last night and was able to get a little more sleep-- though certainly not as much as we are hoping he gets tonight. He had his first pediatrician visit today and that went well. The doctor basically said all the things we've been hearing from the NICU staff so there's nothing new to report there. The highlight of the day was definitely Charlie's first bath. Oh, how much fun we had! Charlie was kind enough to pee all over me while I was carrying him the few feet from his changing table (where I stupidly removed his diaper) to the bathtub. Then he was all smiles for the first minute with his tiny butt in the water. He really seemed to enjoy the warm water being gently washed over his growing belly. But then, for some random reason, he decided that enough was enough and he proceeded to cry and cry until his bath was over. But it sure was fun while it lasted!



I'm just now getting the hang of the camcorder that my brother bought for my birthday (10 months ago). I guess I've got good reason to start using it now! So today I uploaded this video of Charlie coming home. I know it's a few days late but it's still nice to see.


Roy Kitten was kind enough to help us give Charlie his first bath.


Have no fear: the Cuddles and Naps Division has been aptly performing its duties.


Charlie is most fascinated by his aqua swing.


What's that you say? You want another picture of Lily sleeping? Well here you go!

Charlie's First Day & RSV Precautions

Charlie has now been home for over 24 hours. So far, he seems to like it here. Last night Joe and I stayed up with Charlie until after his 1:00 AM bottle. At that point we thought we would try to get some sleep, so we put Charlie in his cozy new bassinet in our bedroom and climbed into bed. Silly us, thinking that Charlie would take the hint and go to sleep. I’m not sure what goes on in the NICU after midnight, but if Charlie is any indication it’s some sort of nonstop party. It was 2:00 AM but Charlie was ready to rock. He lay awake in his bassinet for about an hour, making little cooing and growling sounds to himself, while I jumped out of bed every two seconds to look at him “just to make sure.” Make sure of what, I’m not sure. Joe also woke up every five minutes or so to look at Charlie, so I wasn’t the only crazy one. But at 3:00 AM Charlie had amused himself enough and started to cry. Joe and I decided that we would just sleep in shifts, so I took the Chunks downstairs until 6:00 AM. Aside from a brief 30 minute catnap at 4:00 AM before his bottle, Charlie stayed awake the whole time. At 6:00 AM when Joe came downstairs to take over, Charlie promptly fell asleep and stayed that way until nearly 9:00. Stinker.

The rest of Charlie’s day was good. The visiting nurse came this afternoon to check on Charlie and help us get some of the details of his care straightened out. She pronounced Charlie to be great, which we already knew ;) Tomorrow Charlie will see the pediatrician for the first time and we’re hoping that he will get a good report there as well. Charlie also had some visitors this afternoon. My mom and sister came over, and my sister held Charlie for the first time to celebrate her 25th birthday (happy birthday, Jill!) which was the day before. Later, Joe’s mom and dad came over and held Charlie for the first time. Needless to say, they enjoyed it, and Charlie seemed to as well. Tonight I gave Charlie a sponge bath to get him squeaky clean for the doctor tomorrow and then put him in his cool Ocean Wonders swing. He was mesmerized by the colored lights and rotating fish…for about 10 seconds before he promptly fell asleep.

Our day with Charlie was great, but we can’t forget about our love bug! This morning I went up to the NICU to visit the Bug while Joe stayed home with Charlie. Lily was wide awake and cute when I arrived, and when Dr. Hiatt came over to say hello she greeted him with an obnoxiously loud fart. Such a lady. Joe went up this evening to see her and had a very quiet and routine visit, which is exactly what we need from her. We are still waiting on word as to when Lily can come join Charlie at home. It all depends on how her reflux episodes develop. Hopefully she will make it home sometime this weekend. We can’t wait to have both her and Charlie here together!

Now it’s time for us to make an important public service announcement regarding visiting the babies and RSV.

Most people have not heard of RSV, which stands for respiratory syncytial virus, even though nearly every child has had it by age two. For full-term babies, RSV typically isn't any worse than a common cold, but for preemies, RSV is quite serious. Babies born earlier than 36 weeks are at the highest risk for serious complications from RSV such as pneumonia, bronchiolitis and other sometimes fatal complications. Charlie and Lily were born premature, are multiples and had low birth weights and these are among the highest risk factors for contracting RSV.

Preventing the spread of RSV is very difficult, so although we want all of you to meet the babies, we're going to have to be extremely vigilant about keeping them safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. It can live as long as six hours on hands and up to twelve hours on objects and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others. You may ask “Can’t they fight it off and build up their immune system? Kids need to get sick, right?” The simple answer is NO. Since our babies were pre-term, they did not acquire the necessary immunities to fight off infection. If they contract RSV, they could be hospitalized and develop one of the complications mentioned above.

In order to try to prevent Charlie and Lily from getting RSV or any other illness, our doctors recommend that all visitors follow these guidelines when coming to see them between now and April:

1. When you arrive, please wash your hands and use hand-sanitizer.
2. If you are a close relative who could potentially visit often, please get a flu shot.
3. Please refrain from coming over if you are sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.
5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.
6. Please refrain from touching the babies. For the time being, only the babies’ grandparents and their Aunt Jill and Uncle John will be able to handle and hold Charlie and Lily.

Please know that this is not meant to offend anyone, but we wanted to provide an explanation as to why we'll incredibly paranoid with the babies. Thank you all for your understanding!
Please also note that due to RSV season we are unable to take the babies out in public October through April and must also avoid large family gatherings. We have to be hermits for awhile, but it will be well worth it in the end!

(RSV info borrowed from the blog of a fellow mom of multiples)


Is it just me or does Roy look like he's stalking his prey? Luckily, both Roy and Roger have seemed pretty okay with having Charlie here.


And maybe Roy is okay with things so far because he realizes he can always find a way to get some attention.


The night before Charlie came home, it seems as thought Roy knew something was happening. He got a bit antsy. Notice the cut on my nose? Yeah, that was all Roy Kitten.


Charlie seems quite pleased with his choice of seating options. In the NICU he was either in his crib/isolette or being held. Here at home, Charlie can sit wherever he wants!


Aunt Jill was the first non-nurse to hold Charlie (besides Joe and me, of course), and he seemed to be perfectly content in her amrs.


These last few days, it's been looking like Charlie's hair is going to be red. We can thank Grandpa Fred for those genes!


Despite all the support that our family has given us through these last few months, Charlie did not feel compelled to wake up for his visitors, not even Grandma Anne.


I realize this is the second day in a row that we've only posted one single picture of Lily and that she's been asleep in both of them, but she's pretty enough for us all to gaze at her beauty een if she's not awake.

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.