I posted my new weekly image over on my business blog! I don’t have other images to add to this week’s post just yet, b/c I’ve been busy working on the sessions I had last week. I will try to get some “bonus” Lila images up here tomorrow or Friday though.

For now, here are a couple of random pics I never put on here.

(August 2009, in her room.)

(November 2009, on our way to get our Christmas tree.)

If you’re on my Facebook, you know that Lila took her first “official” steps this week. Real, intentional steps. She’s not walking yet by any means, but she will take steps here and there if we set her up to do so. She gets SO excited, it’s adorable.

I am working like crazy these days, to get everything ready for her birthday next week. I can NOT believe she’s going to be one. Our plan for the day (yay that it’s a Saturday) is to go to the NICU at Children’s in the morning, and say hello to everyone, drop off some goodies, and show off what an amazing job they all did last year. Then it’s back home for celebrating with family and friends!! And lots of tears from mom, I’m sure.

Let the countdown begin.

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Her neurologist uttered these words to me yesterday, during Lila’s appointment, after checking her out and asking me a few questions. He said (picture a blond-haired, blue-eyed guy with a British accent) “she looks great, and she’s doing really well, if not a little ahead of herself”.

I’d be lying to you all if I said that I never thought I’d hear those words from one of Lila’s doctors. I have big hopes for this little girl, and she’s proven her strength to me on more than one occasion.

So, obviously, our appointment went really well. We will be seeing him again in 6 months, and will have another MRI done just before then, to verify all looks good.

We made a quick stop at the NICU on our way out to say hi to anyone who was around, which was fun. A few of Lila’s nurses were there, and it was great to “show her off” to them, so they can see how awesome she’s doing, and how she’s growing. They all agree that she is a looong baby (she’s 24″ already!). My favorite part about visiting them is that the receptionist announces that “Lila Moore is here for a visit”, and then whoever is around comes out to say hi (for obvious reasons, we can’t go into the NICU itself). She gave them a few smiles before starting to screech (feeding time!), so we headed out for a quick bottle before hitting the road. I was doing everything I could at this point to avoid sitting in rush hour traffic with her, as you all know that she HATES when she’s in her car seat and the car isn’t moving.

We still ended up leaving the hospital around 6pm, so I knew we were in for an interesting ride home…and I wasn’t disappointed. Lila screamed (and I do mean SCREAMED, ask Nana, I called her during this) most of the way home. These weren’t just annoyed “lady, move this car NOW” screams, they were the same screams she lets out when she gets shots. Turning purple, holding her breath, strangled, heartbreaking YELLS. Poor babe.

We obviously made it home in one piece, and the little one went straight to bed after dinner. She was much calmer today, woohoo.

A quick shot from our mini-shoot today. I am REALLY trying to capture her during one of her giant open-mouth grins, but no luck yet. She stops the minute I pick the camera up. Typical photographer’s kid!

PinkRomper

Happy 12 weeks old, Lila! I can’t believe it’s been this long already. We love you more and more every day, and can’t wait to see what the future holds.

Yesterday was another Cardiology appt at Children’s. Lila was scheduled for another cardiac echo, and an EKG. Of course, the only appointment available was at 9am, so I resigned myself to getting up at 5:15am, so I could have us both showered, dressed, and fed, and out the door by 7am, to sit in rush hour traffic.

Well, wouldn’t you just know, Lila decided she wanted to get up to eat at 4:15am. She’d been asleep since about 9:30 the night before, so there was no putting her off, so I got up for the day at that point. We were able to get out the door, and on the road on time…

To sit in traffic for over 90 minutes. I hadn’t seen traffic that horrible in the morning, since way back when Lila was first admitted to Children’s. I again resigned myself to the idea of her screaming in the back seat for the duration of the ride, and hoped for the best. Lila normally hates when the car stops, for any reason. So stop and go traffic for 25 miles was bound to be an interesting experience for us.

Shockingly, she slept. THE WHOLE WAY IN. She didn’t wake up until I took her out of the car in the garage at the hospital. I still can’t believe my luck.

Lila was NOT pleased about the echo, and pretty much yelled during the whole thing. This was probably the first time I got a little aggravated at Children’s, because the ultrasound tech wasn’t very patient with us. I know that during ultrasounds, the quieter/more still a person is, the easier it is to get the pictures they want. Try telling that to a 10 week old. It was apparent to me that the tech was getting annoyed that Lila was so upset, and kept asking me “do you think she wants to burp?” (I was feeding her w/ a bottle, to try to keep her calm), “do you want to take a break?”, and “do you think she’ll go to sleep?”…um, no. She’s 10 weeks old, in a strange place, and you are poking at her with a gel-covered wand, so, no, she’s NOT going to fall asleep or calm down anytime soon.

Thankfully, she got the pictures they needed, and we were able to move on. The EKG was pretty much the same scenario: angry baby, who now just wants people to stop poking at her. But that was over fairly quickly, and Lila settled in to sleep in my arms while we waited for her cardiologist, and the results from the echo and EKG.

We did end up waiting a bit, but I always expect that when we are at Children’s. I know when Lila was really sick, her doctors would appear in mere minutes at her bedside if there was even a question about her well-being. So I assume they are doing the same for all of the babies and children that are there at any given time. Her cardiologist finally came in, and we went over the results of her latest tests. There really hasn’t been any change in either of the two things they are monitoring her for. The ventricle depression is still there, but it hasn’t worsened. (Refresher: one of the ventricle chambers of Lila’s heart isn’t pumping as vigorously as it should be, and the doctors aren’t sure why.) The PDA (the valve thing that is open when all babies are born) has not closed yet, but it looks like it’s narrowing. We are going to go back in two months for another echo and EKG.

For the ventricle depression, her cardiologist said that as long as she does not seem to be having any episodes of SVT, and is continuing to gain weight, he is happy. It is reassuring to him to see her gaining weight like she has been (she was 11lbs, 2oz at this appointment). For the PDA issue, they will just continue to monitor it, and as she approaches one year old, we may opt to have it closed surgically (they can go in through a vein in her leg, so it would be minimally invasive).

He also told us the results from when Lila had to wear the Holter monitor–nothing irregular to report. She had no SVT during the 24 hours she wore the monitor. She is going to have to do another 24 hours with it before our next appointment though. Overall, she seems to be doing well, which I always like to hear.

Lila proceeded to behave spectacularly for the rest of the day yesterday. Jon started up his MBA classes again last night, so I was on Parent Patrol solo, for the first time. I have to admit, I was a bit nervous about bedtime…but Lila must have known mama needed a break, because she went right down at 8pm, and slept until 3am! That gave me a boost of confidence I needed, for sure. So for the next 7 weeks, Lila and I will be on our own on Mondays and Wednesdays, wish us luck. Jon is sad he can’t be around those two nights, but we know that him finishing his MBA is important to us, so we will make it work.

I’ll leave you with a photo I took of the little one this morning, during her THREE AND A HALF HOUR NAP. Granted, she was in my bed, but still! A nap! During the day! It was a miracle.

Snuggling with her giraffe, sucking her thumb.

Snuggling with her giraffe, sucking her thumb.

Another quiet day, with our little one. These days are SO wonderful, and so heartbreaking, because we have to leave her there each night. It usually takes us a good 20 minutes to actually leave her side. I just stand by her crib, coat on, purse on my shoulder, and watch her. Tonight she was awake when we left, which is harder to handle than when she’s asleep–she was just staring at us, and we had to eventually turn around and walk away. It kills me, every time.

How can I walk away from this face? It's TOO cute.

How can I walk away from this face? It's TOO cute.

On a more positive note, Lila was a little vulture today. She ate a LOT, for her, and it was awesome. She woke up every couple of hours, yelling her “feed me!” cry, and shoving her fingers in her mouth. This is such a change from last week, when we had to try to wake her up, and it was hit or miss on whether she’d actually want to eat. I think taking the feeding tube out was the best thing we could have done this week. Lila has been so much more responsive about eating ever since that happened. She still has to work on the bottle feedings, but she is taking part of all of them for now.

Lila also gained a tiny bit of weight last night, YAY! It was only 20 grams, which is just over 1/2 an ounce. But it was a gain, and not a loss, so we are thrilled. Hopefully she will gain or stay the same again tonight…I’m really hoping for a gain, after all of her eating today.

Not much else happened today, it was super quiet at the hospital. We watched some of the NCAA tournament while Lila slept on us, and that’s pretty much it. Tomorrow we expect more to happen, as her attending will be back to work, as will the Neurology and Cardiology teams. We have some things to finalize with them (follow up appointments, another echo, a follow up renal ultrasound, etc), and hopefully we can get more answers on when we might get out of there. I’m hoping this weekend will be considered a success by their standards, and we can put a discharge plan into motion.

Wearing her first Red Sox hat

Wearing her first Red Sox hat

Good night, little girl, get some sleep tonight! And EAT, girly, eat. We love you.

I can’t decide if I am glad tonight’s post is going to be boring, or if I wish I had more to report. I’m leaning towards the former.

All we really did today was work on feeding again. As I’ve mentioned before, the weekends tend to be slow at the hospital, and not much happens (well, unless it needs to). So we arrived around 8:30am this morning, just as the little one was demanding to be fed. Lila did great at nursing all day, the most consistent I’ve seen yet. She’s still only going for about 15 minutes total, but in speaking with the lactation team at the hospital, she could very well be getting all she needs in those 15 minutes.

Lila’s nurses are keeping an eye on her weight, as this is one way to make sure she is eating enough (the other factors being her time spent nursing, as well as her diapers, which they weigh). Lila’s weight has dropped a little over the past day or so, and depending on who you ask, this could or could not be an issue. Lila never lost weight initially, as almost all newborns do, due to the trauma around her birth. In fact, she jumped up almost 2 pounds (she was 8lbs, 3oz at birth, and 10lbs, 1oz at her highest weight), due to the fluids the doctors loaded her up on. She has since come back down, and is hovering around 9 pounds today. One of her nurse practitioners isn’t concerned, as long as she doesn’t start consistently losing weight, because she said that our pedi will be keeping an eye on her once she is home with us, and we will also be having weekly visits with the VNA (Visiting Nurses Association) for a little bit, just to keep an eye on her progress. We are just hoping Lila’s doctor feels the same way.

I am a little stressed about this, as I think nursing, and feeding in general, are going great, and she is making progress daily. But if she is losing weight, I have to wonder if she’s eating enough. She seems content and full after each feeding, so I have to just realize we are both doing all we can, and will get the support we need from her doctors, should we need to figure out another solution to get her to gain weight. I’m just hoping Lila doesn’t lose weight tonight too, sigh. I feel like we’re *so close* to getting out of the hospital, and this could be another setback.

Lila slept a lot today, only waking to feed, and for one brief quiet alert period midday. She LOVES the boppy pillow I brought in for nursing, and takes 2-3 hour naps with me on it after almost every feeding. I feel like I’m hogging her from Jon, because she keeps passing out after eating. I told him he could wear the boppy and nap with her, but he hasn’t given in yet. I hope she’s resting up to get all of her strength back, so she can come home soon.

She is SO cute when she naps, I just sit and stare at her, and feel her wiggling her feet against my side, as she curls around me. It’s truly heaven.

We expect more of the same tomorrow, hopefully. Wish us luck that her weight stays around the same, and she wakes up to bother her night nurse, and demand food all night.

Adorableness, at its best

Adorableness, at its best

Sweet dreams, pretty girl, we love you.

Well, I was definitely a zombie last night! I may have gotten about 2 or 3 hours of sleep–this was due more to the environment we were in, than Lila. All of the alarms on the babies’ cribs, the nurses talking, and the lovely chair I was sleeping on, just did not add up to a comfy night at home. Jon was able to get some sleep, in the sleep space we had, even though he claims he woke up at one point and didn’t know where he was. I spent most of the night next to Lila’s crib, on my pull-out chair, heading over to the sleep space around 6am to grab a quick nap and shower.

As I suspected, I leapt up at every sound she made, to see what she was doing. I think we had a pretty good night, considering what our goals were. Lila woke herself up around every 3 hours, and demanded to be fed. Then she went straight back to sleep, no fussing. Granted, she wasn’t eating for a long time when she woke up, but she must have gotten enough to satisfy herself, and to have gained a little weight. So we will consider it a success!

Clearly, the winner of last night's sleep competition. She's even smirking at us in her sleep.

Clearly, the winner of last night's sleep competition. She's even smirking at us in her sleep.

Overall, today was fairly quiet. We spent the day working on feeding, nursing on demand for most of the day, and trying a bottle for her noon feeding. Lila is most definitely a snacker, but that is something we can work on once we get her home. We want to keep the bottle in the mix, so that Jon can feed her once we are home. She did better today with the bottle, than we had ever seen before (we  heard rumors of her taking bottles, but she almost always refused from us), and took over half of one from Jon in one sitting. A nurse gave her the other half while we were at lunch. It seems that for now, Lila prefers smaller amounts more often, so we will go with it, as long as she continues to gain weight and let us know when she is hungry.

Lila had a couple of visitors today also. One of our family friends, who I have known pretty much my whole life, surprised us with a quick visit this morning. She was in town with her husband for their own medical agenda, and was sweet enough to think of us, and wanted to stop by to say hello. Mame, thank you so much for coming by, it was wonderful to see you! We are keeping you guys in our thoughts as well, hoping your trip home is soon.

Lila’s Aunt Sarah also came to meet her today. Sarah is one of Jon’s and my closest friends from college, and we were SO happy to see her. She spoiled Miss Lila too, with some super cute outfits we can’t wait to dress her up in, as did her mom.

Aaand, that’s pretty much what happened today. We are hoping these quieter, non-dramatic days are an indication of our impending homecoming…we shall see. The weekends, as I’ve mentioned before, tend to be slower and quieter, so we are planning on working with Lila on her feeding for the next two days. Hopefully, our hard work will impress her doctors enough to send us home soon.

Snoozing on the boppy.

Snoozing on the boppy.

Good night, little one, sleep well. We will see you tomorrow, we love you!

Tonight’s post is going to be super short, as we are at the hospital, and staying over tonight. This site is blocked on my computer, so I am using one in the Center for Families here. The shift key sticks, and I am not used to using a desktop PC at all.

Today was another quiet day for us, we mainly worked on feeding. Lila did AWESOME last night, and took 3 3 ounce bottles from her night nurse! She’s also been feeding “on demand” today, and has been doing great, even though I suspect she is a snacker…she’s kept me busy today! We are all very pleased with this progress.

Lila was moved again sometime last night, so she is in an even more private room. There is only one baby in there besides her, and it is super quiet. We think this is helping with her feeding, and are so glad she was moved. Because the room is more private, I am going to be staying in there with her tonight, on one of those pullout chairs. I have a feeling we are in for a long night, and I can’t WAIT. Our first night together with Lila! We’ve waited for this for 21 days.

Just posting one pic tonight, it takes too long to do this on this computer. See if you can guess what other big development took place today, from it. Wish us luck tonight, Lila is about to show everyone what she is made of!

Check me out!

Check me out!