Early Intervention

Since we don't have so many doctors appointments anymore, we don't have as much going on. Emma and I spend a lot of time playing and 'talking' together. We also shop a lot since we don't have much else to do to take us out of the house. Neither of use can stand staying in all day everyday. So, we were thankful that Friday was our first day of Early Intervention.

I, of course, was worried about whether she would be tired, hungry, and uncooperative or smiling, happy and very playful. I had planned, the night before, the times she should eat in the morning for the best shot at success. She could get up to at 6:30 like she had done that day, then she'd eat again at 9:30 or 9:45 so she'd be rested, full and happyily ready to play with Miss Kelly, our physical therapist, at 10. I thought even if she woke up at 6, I could make it work. Emma being Emma though - unpredictable - she got up at 4:30 that morning fell asleep again until almost 8, ate at 8:30 and wouldn't fall asleep for a nap until 9:30. Leaving her tired and getting hungry when Miss Kelly arrived. She actually behaved better than I expected her to, but she made me a liar throughout the session.

Kelly started with some rattle shaking to see if she would look at it. She turned her eyes, but not her head. One of the goals we set for EI was to get her head to turn past her shunt to the right. She hadn't been turning it that leaving us worried that she would never do it. But, she's been doing it frequently for the last week or so which I told Kelly. Did she do it for her? No! Then I told her that she'd done better with Tummy Time this past week, lifting her head more, rolling over a few times, but that she still hated it and won't spend much time there without crying. I commented that I couldn't imagine how she would sleep if we were still supposed to put our babies to sleep on their bellies. Sure that she would pitch a fit, we gave Emma her binkie to keep her content during her Tummy Time, so what did she do? She laid her head down when placed on her belly, sucked on her Nuk, and looked very ready to take a little nap. Really, Emma? Now you're going to pretend you're happy on your belly? Finally, Kelly asked if she ever brought her hands together or to her mouth. Are you kidding me? Constantly! Did she put her little paws in her drooly little mouth during Early Intervention?? Not once!

I hope that someday, the nice ladies at Early Intervention actually get to see what the real Emma is like because they have yet to do so and she's a lot of fun!

4 months!!

It's official! Emma is 4 months old today! As this day was approaching, I couldn't believe it was coming so quickly, but now that it is here, I really can't believe it! I think this past month has brought the most changes in Emma thus far. Smiling, laughing, holding toys, chewing on her hands and toys, maybe even a little teething - almost everyday brings something new. 5 inches longer and 5 pounds heavier than the day she was born, Emma becomes her own little person and even more a part of our family everyday.

Enjoying her new teething ring right of the fridge.

I was bummed that we hadn't taken any kind of monthly picture to see how much she's grown from month to month, but being in the hospital limited us a bit. This morning, though, I looked at Emma sitting in her bouncy seat and realized how much bigger and older she looked in it than the day she came home from the hospital, so I took a picture to compare it to the one on the day she came home.

September 11th, 2008 - 8 1/2 weeks old - First day home from the hospital

November 15th, 2008 - Her 4 month birthday! (17 1/2 weeks) Home for 2 months and 4 days.

I think this month we'll start taking a picture of her with her Winnie - the -Pooh bear every month.

I'll be excited to see what this 5th month brings for Emma, Jeremy and I! I'll be hosting Thanksgiving at our house again. It will our first family holiday with a little one! What a nice chance for everyone to spend time with her. I will also turn 30 during her 5th month which is both shocking and a little bit exciting. And we'll be decorating and getting ready for our first Christmas together which I can't wait for! It will be such a magical time! I'm just so thankful that Emma will be able to enjoy the holidays without recovering from surgery which I feared she might. We can, hopefully, just relax and enjoy and for once feel like typical new parents with a healthy baby girl experiencing the joys of this time of year!

Two for Two

We are now on the other side of both of our doctor's appointments for the week! And ... they were both good! I'll start with Neurosurgery since that was the biggie!

My heart was racing and my hands were shaking a bit as we drove to Children's Hospital today. I had spent the past few days preparing myself for bad news and arming myself with evidence that her shunt was getting better. I've had many reservations about this particular surgeon despite many positive reviews when I've mentioned the name. Since Emma's second surgery, she has continued to have swelling and fluid around the valve and resevoir which is what I though we were trying to fix with the revision. I had prepared, well maybe convinced, myself that she was going to tell us we had to do another revision. I had a list of argument points running through my head to avoid rushing into surgery and was even ready to say no to surgery and ask for a second opinion.

To my surprise, she said it looked good! She said the fact that it was soft was very good and that it was okay that it fills when she cries and when she's lying down. I was shocked!! My list of complaints flew out of my head and my ill feelings went along with it. I asked when we should expect it to heal completely. At least 3 more months was the answer! It would have been nice if I'd been told that a month ago. Instead, I was told 'awhile'. What does that mean?

Anyway, she thought Emma looked very good developmentally and neurologically. She measured her head which she said was still on the larger end of the spectrum, but that she didn't think it was disproportionately large for her body size. Thank you! Head size is not always dictated solely by age! She measured Jeremy's and mine as well because I mentioned that big heads run in my family. Surprise, surprise! Jeremy and I are in the 98th precentile for head size as well! She wasn't surprised since we are bigger people and therefore said Emma's head size makes sense! Hooray!

She ended by saying she wanted to see her in a year! I told her we'd be moving to Pittsburgh in the summer so she said to see her before we leave. She was happy to hear Pittsburgh was our destination - neurosurgically speaking - and that she'd be happy put us in touch with a good surgeon should we need one! I can't tell you how relieved we were leaving this appointment! Finally! We feel like she really will be okay!

Yesterday, we went to the pediatrician. Another good appointment. Although still stuggling with the weight gain. She was 25 inches long (75th percentile) and 12 lbs 6 oz (less than 50th percentile). She only gained 5 oz in 2 weeks. I was surprised. I felt like she was eating more and eventhough she doesn't like to take a lot at once, she seems to have compensated by eating more frequently. We haven't decided just yet what to do about it. Dr. Sullivan wanted to wait until our neurosurgery appointment today to see if it could be shunt related since I was sure she was going to say it wasn't working. Since it's not though, we may concentrate her formula so she gets more calories or we may try a different reflux medicine although I'm not sure it's reflux related. She did say that this is the time when babies start to gain more slowly and that she actually is still following her growth curve so maybe she's just a light eater. Perhaps it's because she spends so much time eating her hands!Really, though, if this has become our biggest concern, things are going well considering how much worse it could be. Great report on all other accounts though!

I was worried that the upcoming holiday season would be filled with worry over additional surgery. It's so nice to know that we can relax and just enjoy the holidays! My mom said she prayed all day about our neurosurgery appointment. Of course, we've said prayers of our own. Thank you, Lord, for answering our prayers!

Same old, Same old

I wish I had some witty story about parenting or some cute little take about something amazing Emma has done, but, alas, I don't. I can't believe I have posted an entry since Thursday! Just not much to say I guess. Emma continues to do well. We've really kind of figured out a pattern that works ... most of the time. She eats, we play and she sleeps. Then we do it again and again and again! It's simple and might seem obvious, but she really has just started to get over needing to be held all the time. She still likes to cuddle when she's tired, but she has learned to be quite content playing on the floor.

I've noticed that she seems to be moving out of her excessively fidgety phase. She still likes to squirm, but it seems a little more controlled and deliberate. Her legs are often still or her curled up close to her tummy, no longer in CONSTANT motion. She has learned to kick the bars that go over and play mat making all the toys swing and jiggle. Tummy time still fails to be a source of enjoyment, but it's getting better. I still can't imagine how we all used to sleep on our tummies. I'm told we did though. Emma would not be a good sleeper if she had to sleep on her tummy. She rolled over a few more times the other day from tummy to back and then today she rolled from her back to her side. Not all the way over yet, but I think that's coming soon!

One minute she's on her tummy.
The next she's on her back!

Her Zantac seems to be working. We've been testing different doses lately. Dr. Sullivan said she could go between two different doses. We started on the higher one. I wasn't sure it was making a huge difference, but when I switched to the lower one, she didn't seem to be eating as much. We're back to the higher one which has helped her settle into an eating

pattern. She eats 4 - 5 oz every 3 hours. It's a little more frequently than I'd like, especially since it includes a middle of the night feeding, but I don't think she can eat a lot at one time. I guess sleeping through the night didn't work for her. Hopefully, it will again soon.

We've been enjoying our break from doctor's appointments although then it means there isn't much to report. We have a big one this week though! Tuesday she has her 4 month pediatricians appointment which I'm looking forward to. Wednesday is neurosurgery ... which I am NOT looking forward to. I just don't know what she'll say. I'm hoping it's good, but I'm trying to prepare myself in the event that it isn't. Well, whatever happens, happens.

Yesterday, we went Christmas shopping all day in Boston. Not the best day as far as whether, but it didn't rain and it was fairly warm so Emma and I braved it. We didn't find everything we were looking for and had to trapse all over the city, but it was good exercise for me and good sleeping for Emma. She even got several compliments from a few adoring grandmother-types and even a guy!

That's about it I guess. I feel like I often start a post by saying there isn't much to say, but then end up writing several paragraphs. I'm sure there not always very interesting, but hopefully, someday Emma will look through this wanting to know what she was doing 1 week shy of her 4 month mark.

She Loves to Play!

It may seem silly to some, but we just figured out that we need to play with Emma ... a lot. Now I'm not saying we don't play with her, but up until this week, it's been mostly struggling through Tummy Time. Admittedly, since she hates it, we haven't been very good about it. It's not that much fun to see your child face down on a blanket, struggling to lift her head only to have her either a) find her hand and begin sucking, or b) scream into said blanket while the lump on her head throbs as it fills with fluid. So instead, we give in and don't make her do it. I swear, when it matters, we won't give in just because she doesn't want to do something.

Of course, as I write this, Jeremy says to Emma, "Wow, you are getting better at tummy time!" She's making me a liar once again. There she sits, propped up on her arms, looking around, tolerating it longer than she ever has. Now I'm cheering and clapping while Jeremy gives me a look like I'm crazy. He says she's just fallen over. I say she's just rolled over from her tummy to her back!! "That's how it starts," I tell him. I told him to put her back on her tummy. Again, she kept herself propped up, lifting her head and chest high. I wondered if maybe it really was a fluke, but I continued to watch in hopes that my little peanut will repeat her trick. Just as I was about to give up, she starts leaning to the right, then low and behold, she has again rolled herself on to her back! I really can't believe how fast they learn to do things. One day she can't. The next day she can! Jeremy tried once more, but she apparently had reached her limit. She resorted to her typical Tummt Time tantrum. Wow, that's a lot of T's!

What I was going to say about playtime, before Emma performed her feat of wonderment, is that I've realized that some of her crying during the day is out of boredom. We sometimes dangle a toy here and there, but mostly we've just been sitting her and standing her on our laps while making faces at her. In the past day or two though, it has been my discovery that she likes to lay on her back and play. She likes to look at toys of all kinds. We're still working on her getting to grab them. She seems to be more of an observer than a hands-on participant at this point. But she follows toys with her eyes up, down and all around. She laughs, smiles and talks in delighted response.

Our day now is more enjoyable with our new, more involved playtime. She eats, then plays and then is ready to fall asleep for a little nap. She seems even happier than before. I guess it would seem obvious to most eventhough it's a little known fact that playing makes kids happy! He he. I guess that time has just gone by so fast, and she changes so quickly, that the simple things tend be easy to forget.

Still Looking Good

Her shirt says it all!

I've mentioned many times that we are constanly concerned about the back of Emma's head. The area around the valve has always been a source of worry. In recent days, it has begun looking better! A few weeks ago, I was certain we'd be headed for another revision, but now, being cautiously optimistic, I think we'll be okay. I'm thankful for the advice from our neurologist and pediatrician to wait and give it time to heal unless she shows signs of being under pressure. Had I not waited, I'm not sure we would have seen the improvement that we have in the last week or so. Today for sure has been the best! After giving her a bath, I brushed her hair and noticed that there was so little fluid in the area that I could see the top of her shunt under her skin. She still continues to build up fluid when she cries or if there is pressure on the bottom of the area while we are holding her, but it takes longer to fill and doesn't seem to get as full. I even noticed that while she was laying on her back playing tonight, it really didn't swell at all. I'm sure it's hard to imagine exactly what I'm talking about since I haven't posted any pictures and most people haven't seen a shunt much less one only a month after surgery. For us though, it has become a habit to constanly study the area for changes. I'm still nervous, but I finally feel like it might be okay. Her hair is getting a little longer and even is starting to hang down over her shunt. She still has a very large bald patch - who knows how long it will take for that to grow in - but I can see that once her hair is long enough, no one will know there's a shunt underneath.

In search of answers or anecdotes, without contacting her surgeon, I have been researching shunts and hydrocephalus on the internet. I've done it before, but each time, I come from a differnt place and the information takes on new meaning. Yesterday, I found a message board for people with hydrocephalus and shunts. Everyone has a different story and different reasons for having shunts, but everyone seems so connected. I posted about my concerns hoping for reassurance and people who had the same experiences. Finally, a little while ago, I received a message from a mom whose son had the same kind of swelling for awhile after his surgery. She thought our situation sounded okay and said they were told it was okay as long as it continued to get smaller in the days and weeks following the surgery. I also decided to join the National Hydrocephalus Foundation. I don't know that the membership means a lot, but it includes opportunities for parent-to-parent support, newsletters and access to support people within the Foundation.

I haven't really wanted to use the term hydrocephalus to describe Emma's condition because it conjurs up so many images. Whether I use the term or not though, she has it and the only way to get support and learn about it is to seek out others with the condition. Besides, if there ever were a person who would contradict the images that comes to mind when a person says that their child has hydrocephalus, Emma is that person!

It's November??

I can't believe it's already November! Where has the time gone? I remember, when Emma was still in the hospital, thinking that time was passing so slowly. On the one hand, I was missing her life because we were so confined and restricted, especially in the beginning, when we were in the NICU. On the other hand, we couldn't imagine that we would ever get past that part of our lives. That was July. (And August. And September.) But now it's November! Not only is it Fall, it's almost Winter! Those times seem so far away. They almost don't seem real! It's amazing realizing after time has passed how quickly it has gone.

My mom was in this weekend. It was a short visit, but we really enjoyed ourselves. She arrived Friday night and got to see Emma in her bunny costume. Saturday afternoon, we left Jeremy at home with Emma so she could take me to lunch in the city followed by shopping. Lunch was lovely! No luck shopping, but it was nice to be out. I missed Emma, of course, but knowing she was at home with Jeremy helped me to just enjoy being out without a stroller. We came home to find that Jeremy had a tiring day since Emma didn't want to sleep all day. We spent the evening in trying to get Emma to nap. Once she finally did, I began making dinner. As usual, she was wide eyed within a few minutes. We finally brought her swing in the kitchen while we ate. Thank goodness she likes her swing now! It's a lifesaver!

This morning, Mom, Emma I had a little playtime. She was in a very good mood! Laughing and smiling more than I've ever seen. Mom made silly faces and made Emma's bunny give her kisses which made her squeal and wiggle in delight.

Later we decided to give Jeremy a break and take her shopping with us. Our mission was to get a Bumbo seat. I really wasn't into them and hadn't thought of getting one, but it seems all of the other babies have them so we decided she should have one too. Plus I realized it would be good for her head.


I think she was a little tired at this point and couldn't quite hold herself upright.

For one, it will help keep her upright which helps with the shunt and keeping fluid collection to a minimum. It will also be good so that she isn't laying on one side of her head. I've been a little worried for awhile that the left side was getting flat since she usually sleeps on that particular side. Her hair seems to be a little shorter on that side and not as full which might contribute to my fear that her head is not as round as it should be. Anyway, I'm not sure she likes it yet, but I think she will as she gets used to it.

This weekend made me realize how much she has changed even in the last month since my parents were here last. She laughs and 'talks', holds her head up, looks all around, stands on our laps, can sit up with support and is very into her sucking on her hands and anything that she might get ahold of.
She certainly isn't my tiny little newborn anymore. She has her own little personality and amazes me everyday!