April 2009


Jon and I have taken to crediting pretty much anything Lila does out of the “ordinary” (seriously…nothing is ordinary anymore here, haha) to her going through a growth spurt.

Eating more often? Growth spurt.

Refusing to nap all day? Growth spurt.

Napping ALL day? Growth spurt.

I hear once we stop blaming everything on a growth spurt, we move onto blaming it all on teething. Can’t wait!

This weekend was low-key for us, which was nice…especially considering Lila wasn’t in the mood to nap yesterday. She made up for that today, when she took a 3+ hour nap on Jon, and then woke up only to be fed, and slept on me immediately after, for 2 more hours. We were rewarded for a quiet day with a couple of hours of screaming tonight. She’s just trying to keep us on our toes, I think.

Lila had her follow-up renal ultrasound on Friday back at Children’s, so the two of us made the trek in. She was a total angel during the ultrasound, she just sucked on her pacifier, and didn’t move at all! The tech said she was the best baby she’d had all week, she couldn’t believe how good she was. I swear, this girl is just trying to make me look bad sometimes, haha.

The ultrasound showed that the adrenal hemmorhage on her right kidney is almost gone – YAY! We will likely need to go back again for another ultrasound, as they will want to see it fully resolved before we can check that off of our list at Children’s. But progress is good, we will take it.

This week we don’t have any doctor’s appointments–our first week free since we brought Lila home. Hopefully we will have a few playdates (for Lila, and for Mom!), as long as the weather cooperates. My newest paranoia is dressing Lila appropriately for the crazy New England weather. I’m neurotic about making sure she doesn’t get too hot, or being in the sun too long, seeing as she can’t wear sunscreen yet. It’s going to be an interesting summer with that little rule, that’s for sure.

I’ll leave you with some new photos I took of her yesterday. Some of you have seen these on my flickr or facebook pages, but I wanted to share with everyone who isn’t on there. I love having a model in the house 24/7!

Just being cute! She's NOT sleeping, I wish.

Just being cute! She's NOT sleeping, I wish.

She was "talking" to me here.

She was "talking" to me here.

And, just to show you I’m not making things up, here is Lila during one of her more serious moments:

Serious face for such a little peanut.

Serious face for such a little peanut.

Lastly, a shot of Lila and Jon that I took on Friday night, she was helping him make dinner:

One of my favorites.

One of my favorites.

I wonder if and when I will have any photos of Lila and I together?! I’ll have to work on that.

Two months. Eight weeks. Fifty six days. However you measure it, Lila is two months old today.

Time is a funny thing. The past two months hold so many memories, so much emotion, it’s hard to believe we’re where we are now. It feels as if time has both flown, and stood almost completely still, all at the same time. It feels like yesterday that I was at the hospital, in labor, awaiting our little life-changing wonder. And yet, if I think about all that has happened over these last eight weeks, it feels like a lifetime ago. I don’t know if that makes any sense, or even if I want it to. It’s just how it feels.

Jon and I took hundreds of photos of Lila while she was in the NICU. You’ll notice that there are very few on here from the first few days. It’s not because we didn’t take, or don’t have, those photos. We do. They are our darkest moments, and bring back almost unbearable memories of just what those first days were like for us. But we will be glad we have them, someday.

We decided tonight to share a couple of them. Not for pity, or for sympathy. But for joy, and love. To show not only all of you, but to show US, just how far we’ve come. It brings tears to my eyes to see where we were eight weeks ago, and to see the photos I took today. Lila has been through so much, beaten so much, and we couldn’t be more proud of her.

Day 1. Jon sent this to me, to show me how she was grabbing his finger.

Day 1. Jon sent this to me, to show me how she was grabbing his finger.

About 4 days old here, complete with vent, and on her cooling mat.

About 4 days old here, complete with vent, and on her cooling mat.

You can see the cooling mat in both of these photos. Along with a very swollen Lila, due to all the fluids being pumped into her. You’ll also notice the Duck making his first appearance–she still sleeps with him and the giraffe. We swap each night, to this day. I have a feeling we will for a very long time.

Eight weeks later…

Lila now looks for me or Jon when we enter a room. Her whole face lights up, and she breaks out into a gigantic grin when we smile at her, talk to her, sing to her. She coos and “talks”, to us, the TV, her toys. She will grasp my finger tightly if I place it in her palm, and follow a toy if I move it in front of her face. She has hungry cries, tired cries, hurt cries, and we can differentiate between them. She loves bathtime with dad. She’ll curl her little body over towards me if I bring her in bed to get her to sleep longer, and nuzzle her head underneath my arm. She will almost always nap in her carseat in the car–as long as there are no red lights during the journey. Her witching hour seems to be shortening, and her cries almost always have purpose now. Roxie now considers her part of the family, and her cousin Gracie loves trying to grab her hands, as if to say “hey, come play with me!”.

Smiling, even late in the day

Smiling, even late in the day

It's hard to catch this on camera, trust me!

It's hard to catch this on camera, trust me!

Beautiful, serious girl.

Beautiful, serious girl.

I’m not great at the sappy stuff, ask anyone. So here goes.

Little girl, your dad and I love you so much. You are a true miracle to us, the strongest person we know. Our lives have completely and totally changed because of you. And we wouldn’t have it any other way.

Oops! Another week went by, and I didn’t update! I HAVE to work out a system for posting mini-updates more regularly. I will, promise.

We had a busy week last week, full of playdates with friends, which was wonderful. I think we are starting to settle into our new lives together, and it feels great.

I’ll get to Lila’s pediatrician appointment from Friday (complete with shots!) in a moment, but first, photos from a playdate with my sister, Caitlin, her daughter Grace, and our friend Erin, and her son Jacob. Gace & Jacob are only a month apart (8 and 9 months respectively), so it was hilarious to watch them interact. Lila, shockingly, slept in her car seat while these two were playing (we drove into Boston to go to Cait’s place, the car always makes her sleep, thank god), so I didn’t take any shots of her.

My little buddy, Jacob, he's such a ham in front of the camera

My little buddy, Jacob, he's such a ham in front of the camera

The look she always gives me when I break out the camera

The look she always gives me when I break out the camera

Trying to steal each other's toys, as usual, haha

Trying to steal each other's toys, as usual, haha

We also saw my other friend Kaitlin, and her son Jacob (confusing, I know!), he was born 2 days after Lila. We didn’t take any pics that day, but we definitely will have to next time! Jake was a good boy, and slept most of the time–I was so jealous that Kait could put him down and make lunch for herself! I hope Lila was taking notes.

Friday was Lila’s pedi appointment. She was also 7 weeks on Friday, time is flying! She’s been home almost a month now, I can’t believe it. Her appointment consisted mostly of the usual: length and weight checks, well baby checkup; we also started our immunization schedule…ugh.

Lila’s measurements are right on track, she’s still gaining weight, so we were super happy to see that. We also decided to start her on reflux medicine, in hopes that will help lessen her spitting up (which I feel, if anything, has only gotten worse since we’ve been home, not better). She’s on prilosec now, and has been since Friday night. We think she’s doing a lot better, there has not been much spitup since then. She also seems less uncomfortable after eating, less squirming and fussing. So hopefully we are on the right track!

And yes…shots. I was only semi-dreading this, as we are pretty used to seeing doctors and nurses stick Lila with needles, after everything at Children’s. I must say, I wish I’d been more prepared. Her first “shot” was an oral vaccine, for rotovirus. She hated it, but less then the initial prilosec prescription (unflavored…we remedied that quickly)…and was doing well with getting it down, until she choked on it. The nurse had been giving her a little at a time, to ensure she was swallowing it, and she either refluxed, or breathed in one of the “squirts”, and started choking. This SUCKED, as, once again, I was holding her, and she wasn’t breathing. They say bad things always happen in threes, and this is the 3rd time I’ve held her when she’s stopped breathing, so I HOPE this is the last time. It took us about 10 minutes to get her to calm down again, and stop wheezing and gagging on the vaccine, until we could finish. NOT FUN. The other vaccine was the only injection that day, and for a HepB booster. I thought she’d tolerate this fairly well, as she was stuck many, many times while in the NICU…and I was once again proven completely, totally, utterly wrong. She was SO angry. She screamed one of those long, drawn out, “watch me hold my breath and scream a heartbreaking silent scream, while my face turns purple” screams. Thankfully, I was able to calm her fairly quickly from this one. We won’t see the pedi again for a month (we are seeing him at 2, 3, and 4 months, to get up to date on the vaccine schedule, and to make sure things are progressing with us as they should).

This weekend Lila’s Aunt Sarah came over on Saturday, which was fun. Lila, of course, was an angel while she was here, and slept most of the time. I think I need to just schedule a constant stream of visitors to the house, or playdates out, because she is ALWAYS better behaved when other people are around. I think everyone who sees us must think I’m nuts for saying she fusses a lot, haha.

As most of you know (well, anyone from MA), today was Marathon Monday. Dad took the day off, and we walked up to the marathon to cheer the runners on. I love that we live essentially on the marathon route, it’s always a fun day to be close to all the activity. It was pretty cold today, especially for mid-April, only in the 40s, so we weren’t planning on going for long. However, Miss Lila didn’t want to go at ALL, so we only lasted about 5 minutes up there before she wanted to come back and eat. She hadn’t eaten well before we left, so I suspected something like this might happen. So we just turned back and headed home, and watched the rest on tv. There’s always next year!

A couple of pics from today:

Our little thug, how cute is she?

Our little thug, how cute is she?

Messing around with dad

Messing around with dad

I love this shot of the 2 of them, so cute.

(FYI, we did NOT take her out of the house like this. Dad was just experimenting to see if she’d like the Bjorn better facing out, b/c she’s always fussing if we take her out in it facing inward, the correct way. And, of course, she does! However, she will NOT be leaving the house, or staying in the Bjorn this way, until she can hold up her own head.)

And now we’re onto Week 5 at home! I can’t believe Lila will be 8 weeks old on Friday. Wednesday the nurse is coming to put the Holter monitor on Lila, so I want to keep her semi-calm for those 24 hours. And Friday is the renal ultrasound at Children’s. I’m sure we’ll see my sister and Erin at some point, I can’t go too long without them!

Happy Easter!

No, we were not brave enough to bring Lila to church today…not just yet. But soon! We are lucky we didn’t attempt church either, because SOMEONE has been a total fusspot all day today.

I think I totally jinxed us by mentioning her shortening fits in yesterday’s post, because Lila was a disaster last night, from about 4pm-11pm, and has been a cranky bear all day today also. Jon is upstairs now, trying to work his magic on her…we shall see how long this takes!

Nana & Gumps stopped by today on their way home to the Berkshires, and of course, Lila behaved up until the very end of their visit. Nana happily handed a screaming babe back to her mom, but not before I snapped a quick shot of them with Lila in her Easter outfit (yes, I dressed her up a little, even though we didn’t go anywhere).

Lila w/ N&G

Jon’s sister Lyndsay also came over for a little bit, and true to form, Lila slept the ENTIRE time she was here! I swear, people must think we are making all this up, about her incessant fussing. I should take a video of the scene occurring upstairs as I write this, so you can all see that she does NOT sleep all the time.

Here are a couple more shots of Lila from today, I just had to show off her cute outfit (although, the pants weren’t supposed to be part of it…darn New England weather, and your 40 degree temps in mid-April!).

1st Easter

Sleep

In this bottom pic, you can see what I think is a birthmark in her eyebrow–it looks like a freckle smear.

This past week FLEW by, sorry it’s been so long since an update! I hope I remember everything that we did this week.

Lila had a Cardiology appointment at Children’s on Monday this past week. This was for an EKG, and to just see how she is doing since she’s been home.The EKG was normal, and the doctors who saw her said she looks like she’s doing great. We have to go back next month for a follow-up echo, to check on the mild depression in her heart function, that was seen on her previous echoes. The attending said that her most recent echo showed that her heart was almost back to “normal”, so this is mostly to just make sure things continue to head in the right direction.

Before that appointment happens, however, her doctor would like to have Lila wear a Holter monitor for 24 hours, to see how her heart functions over that time. This is something we will do at home (the monitor company will either send us the monitor, and instructions on how to use it, or will send someone out to the house to hook it up); we then mail the monitor back to the company, and they will upload all of the data stored in it, for the cardiologists to review. This is just another way the doctors can gather more info on Lila’s heart function, and to be sure she continues to improve.

We found out that day that Lila had gained 2 more ounces since her Friday VNA visit! She was up to 9lb 13oz as of then, the little chunker. We will be meeting with the VNA on Monday also, so we’ll see how much she’s gained this week. Knowing she’s consistently gaining weight is such a relief to us, as we now know that she is getting enough to eat, and retaining most of it (despite the constant spit-up).

I also had my follow-up appointment with my OB this week–I can’t believe it’s already been 6 weeks!! All is well with me, health-wise, so yay. It’s always strange to me when people (including my doctor) ask me how I’m feeling, after everything that’s happened. I honestly didn’t give my recovery a second thought, I was too preoccupied. So I can’t say if I’ve had a good, average, or poor recovery, and I have no idea if it was quick, average, or long. Which will make for an interesting comparison should there be more kiddos down the road.

Wednesday we had a playdate with my sister and niece, and one of our friends, Erin, and her 9 month old son, Jacob. Erin went to high school with Cait and I, and we found out semi-recently that we’d moved to the same town, so we get to hang out all the time now! It so helps knowing other moms in the area, and being able to get together–and to have someone to ask my crazy new mom questions to. These two are bearing the brunt of my nuttiness, so I’ll just have to ply them with wine to get them to continue to hang out with me, haha.

I haven’t taken any new pics of Grace since before Lila got here, I’m hoping to remedy that this week. So here is an old pic from Christmas, of the cutest little niece I know:

Grace

And here is the cute little guy who our girls will be fighting over someday:

Jacob 6mos

We also saw our other friends on Thursday (after Er & I shopped with the kids for a bit–they both slept almost the whole time, yay!), which was great. I’m loving having playdates with our friends, and getting to have Lila spend time with other kids. She tends to behave better when there are other people around, or when we’re out of the house, so let me know if anyone wants to meet up!

I also had a mini-photoshoot with Lila on Thursday, just to see how she’d do, and she was great. I know I posted a photo the other day from it, but here is another that I edited yesterday:

200904_lila_371-websharpedit

Dad was off on Friday, due to the Easter holiday, so he has been able to spend some quality time with us this weekend, it’s wonderful. My parents came down today for the night, so were here earlier–the whole fam was, actually, it was fun! A little overstimulating for the little one, but she did very well considering. Her Gumpa (my dad; “Gumpa” came from my mom’s dad, who was supposed to be “grandpa”, but I couldn’t say the word when I was little, so I called him Gumpa, and it stuck) was able to get her to fall asleep too, and she slept (on him, of course) for about a 1/2 hour. Nana was SO excited to play with her little granddaughter too, it took a while before anyone else was able to get near Lila, haha.

And that brings us to now. Dad and Lila are watching the Masters on tv, and we are hoping for a good night from little miss. Similar to my no-hitter analogy, we will not be talking about how Lila has let dad put her down in the pack & play at a reasonable hour for the past 3 nights, and we’ve been able to have some time to just chill and watch tv. We will also not be mentioning that her daily fits seem to be shortening in length. Because that would just not be smart, you know? No need to tempt fate!

I’ll leave you with one last pic, that should help answer a burning question for a few of you: how is Roxie handling things? Well, as you can see, she is doing MUCH better than we anticipated. She is almost back to her normal, high-strung self. There is no more hissing, only some concern when Lila is melting down.

A little peeved here, b/c Lila is on "her" bed

A little peeved here, b/c Lila is on "her" bed

I can’t believe it’s been 6 weeks already. I’ll post a longer update tomorrow (dad’s home for a long weekend, YAY!!!), but for now, just a photo I took today. We had a mini photoshoot at the house, she was surprisingly laid-back about the constant outfit changes and positions I was moving her in. It felt great to pick up the camera again, I’ve missed it. Hopefully this is the start of many, many photoshoots.

Fur

SO happy it’s Friday. As much as I love staying home with Lila all day during the week, I love the weekends even more now, because dad is home too.

Early Intervention came to the house on Wednesday this week, for their initial consultation. Because of Lila’s diagnosis (encephalopathy), she qualifies for EI’s services until she is 3 years old. They will mostly be monitoring her to ensure she is meeting milestones, and developing appropriately. This isn’t something we have to do, but since we qualify, we figure we should take advantage of it, if only for peace of mind. I will definitely appreciate knowing Lila is on track developmentally, and that we are doing everything we can to help her with this. EI not only works with Lila, but they also work with us, to show us exercises and methods we can employ to help Lila with her skills.

Based on their initial evaluation, Lila seems to be doing well. Granted, she is only 5 weeks old, so challenges can pop up at any time, as she gets older, but for right now, she is doing everything she should be doing for a baby her age. I know this goes without saying, but it was a relief to hear that. We will certainly be ready to help with any issues that may arise down the road, but it is encouraging to know, that right now, Lila is being a rockstar. She can pick up her head when placed on her belly, follow toys with her eyes, grasp my finger, and fix on someone’s face, to name a few things. However, EI didn’t evaluate the strength of her vocal cords, ability to projectile spit-up without making a sound, orsuccess at filling a newly changed diaper…but maybe that’s for the next visit? EI will be calling us over the next 2-3 weeks to set up our follow up appointments, and assign a case manager to us.

Lila’s Aunt Caitlin & cousin Gracie came over yesterday to hang out, which was fun. Her First Playdate! If only mom wasn’t so preoccupied with wiping up spit-up and calming the increasingly fussy Lila, I would have taken some pictures…oops. Next time! Gracie was very well behaved…except when she wouldn’t nap–she was having too much fun! And Lila started her daily meltdown early, just to show off to Aunt Cait, which was lovely. But Cait was able to give Lila a bottle–she’s come a long way from last week! She’s taking bottles daily now, we try to incorporate a couple in each day, in addition to nursing.

The VNA nurse came this morning also, to do a quick weight check on Lila, and to check in with me, and discuss any questions/issues. Lila is having NO trouble gaining weight, and gained 5oz over the last week–she’s at 9lb 11oz now! Charlene was very pleased with this, and we will likely only schedule one more visit with her, because Lila is doing so well.

Charlene and I also talked about some of the issues that are particularly hard for me right now. I have no idea why I am sharing all of this with “the internets”, but I would tell most of you who read this anyway, so why not?

One of the biggest things that is hard right now is Lila’s fussiness. She wants to be held ALL the time, and will scream and yell and fuss if you put her down for any period of time. She will also NOT nap during the day, unless she falls asleep while nursing, and can lay on me & the Boppy to nap. This doesn’t work out so well for me, as I end up trapped on the couch for hours at a time (not to mention setting a bad habit for Lila). We are going to work on putting her down for naps upstairs in her pack & play..today’s attempt did not go so well. After letting her scream for about 10-15 minutes, I had to go “rescue” her. She quieted down the minute I picked her up.

I have also been wondering about Lila’s tummy–she seems particularly uncomfortable after eating sometimes, and I wonder if the spitting up is reflux related, or if my milk is upsetting her stomach. I’m going to try avoiding dairy for a couple of days, and see if that helps. If not, then I’ll be calling the pedi to discuss alternative options (formula, or Baby Zantac). We may be adding formula into the mix anyway, if only to help keep her full for longer periods of time, and eliminate the snacking she’s prone to.

Lila’s daily meltdowns are also tough for us. She starts up around 7pm, right as poor Jon is getting home from work. And she won’t settle down until 10 or 11, which is when we’ll be heading to bed ourselves. So Jon works a 12 hour day, to come home to an inconsolable infant, and has to help me (I’m at my wits’ end at this point) with her. We are trying a few options to avoid this, such as the car ride, Baby Bjorn, and putting her down to sleep early (this last one does NOT work at all yet).

I don’t want it to seem like I’m complaining, because we couldn’t be happier to have her home, and doing as well as she is. We love her more than anything, and these issues are just things we will figure out over time. Part of being New Parents that we haven’t mastered…yet. Little Lila best watch out, because we will win, oh yes, we will.

And with that, I’m off, because it is time for the nightly meltdown. I wonder what will be tonight’s solution–car ride? Bathrom fan? Or just sheer exhaustion?? Only time will tell.