Neurology Update

Yesterday Elodie had her six month follow-up at the Stroke Clinic. Although her blood clot is dissolved, they still want to follow her development. Two conditions are commonly associated with both hydrocephalus and strokes (although Elodie's thrombosis is not exactly classified as a stroke because it was in a vein and not an artery). They are cerebral palsy and seizure disorders. The neurologist asked me to describe her current development and then did a few activities with her. Elodie impressed me by reaching out, raking, and eventually picking up a small piece of balled up paper out of the neurologist's hand. It's still really hard for her to coordinate her hands to do what she wants when in a seated position, and I have never seen her actually succeed at picking something up, so I was completely floored, and super proud! After she poked, prodded, and stretched all of Elodie's limbs, she reviewed the concerns present at three months and declared that NONE of them continue to concern her. She said there wasn't anything that she isn't doing right now that she would want her to do. I nearly cried! Elodie's muscle tone was described as "excellent" with no concerns of CP, and she currently shows no signs of seizure activity. She is such a little miracle!

I also remembered to ask for copies of her MRI images from November. Brian is never able to attend appointments with me and I wanted him to be able to see her progress. It's simply amazing.

This is a top down view. In August, the bright white blob in the middle of her head is cerebrospinal fluid (CSF). The light grey material around the edge of her skull is her brain matter. As of November, most of the fluid has successfully drained out. All of the squiggly grey stuff is her brain matter, and as you can see it is now taking up most of her skull. The occipital lobe (back middle) continues to have the least "typical" brain matter, but her neurosurgeon expects continued healing since it was the most impacted to begin with.

This is a cross section view. In August, you can see a giant fluid pocket. (It looks like two in the picture but it's actually all one, the black ovals are all CSF.) Most of her brain was squished to the front. As of November, the entire area was filled in with her brain matter. These pictures make me cry happy tears! I know there's no guarantee that she doesn't have significant brain damage. A brain can look great and still have a poor outcome, and the opposite is also true. However, I find it extremely encouraging and with how well she is doing, I really think she's going to continue to excel. We feel so very blessed!

Elodie is pretty excited, too!

Six Months!

Elodie turned six months yesterday! It was a pretty good month once we got the feeding tube stuff sorted out. We took a break from doctor's appointments and mostly just spent our time hanging out around the house. During this month Elodie enjoyed her first Super Bowl.

Look how much fun she was having! ;)

We also celebrated her first Valentine's Day with a visit from my mom. We didn't do anything very special, but I did get her a card and a Where is Baby's Valentine lift-the-flap book.

Grandma and her favorite grandkids. (Her only ones.)

I took Elodie in for her 6 month appointment today. She now weighs 13lbs 14.5oz, which is 11th%ile. Her length has grown to 25.25" (23rd%ile) and her head circumference has grown to 17" (or 43cm, 77th%ile). All of her growth charts show that she is keeping right on her curves. Yay Elodie! Developmentally she is now considered delayed in all areas (according to the ASQ-3), but looking back at her 4 month checklist she is now doing almost everything for that age, so she is showing steady progress. And she really did make some big leaps this month, so let's get to it!

• She is still wearing 3-6 and 6 month clothing. She is in size 1 diapers, but after this box is empty we will move her up to size 2. She has been having a lot of messy leaks lately!
• Elodie is still tube fed. We continue to work on increasing volume, and she is currently getting about 17.5oz per day. We dropped her overnight feeding because she often threw it up, and it was really disrupting my sleep. So now she gets just 4 feeds per day. She is still getting breastmilk fortified with formula to 27 calories. In case it hasn't sunk in, that means I have been exclusively pumping for her for 6 months now! That really deserves its own post.

Doing her homework!
(When feeding, she is encouraged to use her oral motor skills so that she won't become orally averse.)

• Most nights she sleeps from about 9:30pm to 7:30am. She is such a great sleeper! She still takes three naps per day, with the morning nap being the longest (about 2-3 hours). Her afternoon nap is usually about an hour and her evening nap is hit and miss. Some nights she refuses it altogether. 
• She is a super smiley, giggly, happy baby! It doesn't take much to get laughs and squeals of delight from her. We have all been blessed by her amazingly happy-go-lucky temperament! It's a rare occasion for her to be fussy and upset, unless she is hungry or super tired.

Daddy gets the biggest smiles!

• Elodie continues to make vowel sounds, but no consonant sounds yet. However, she is exploring a wider range of sounds and is beginning to make "p" sounds by putting her lips together and then puffing air through them. She still blows raspberries, but hasn't been doing it as much lately. She really likes to grunt and groan. Especially when she's really concentrating.
• Up until this month Elodie had very little interest in the baby in the mirror. She will now stare at herself, but she isn't really smiling. However, she loves to look at me in the mirror, and then look at me in person. This is accompanied with BIG smiles. She is fascinated by her two mommies!
• She continues to get better control of her hands. She has recently begun holding on to me more when I am holding her on my hip. Her stability when upright like that has come a LONG way! She also began reaching for my face and putting her fingers in my mouth. I love the interactions!

Now for the big stuff!

• Elodie finally rolled from belly to back! We were all so proud of her! I caught a few rolls on video and sent them to all of the grandparents. Everyone cheered. Noah also thought it was super fun to watch her go. She is getting close to rolling back to belly. When we lie her down she constantly rolls from side to side, and sometimes she looks like she's going to flip completely, but just not quite. I think it'll happen soon!

• While on her back, she is also beginning to push her butt up in the air. Sometimes she will scootch herself backwards doing this.
• During tummy time recently, Elodie pulled her knees under herself and pushed her little butt up in the air. She had her head on the floor when she did it, so it was nothing close to hands and knees, but we couldn't help but feel hopeful that this girl will crawl! But she's got to work on pushing herself up on her hands before that happens.
• Since the prerequisite to feeding therapy is unassisted tripod sitting, we have really been working on it. And guess what? Elodie supported herself on her hands for 20-30 whole seconds! It's not something she is doing consistently, but we're amazed at her progress!

Elodie's half-birthday was a very snowy day! We got about a foot of snow, and we all had a little bit of fun playing in it. For Elodie, that was about 2 whole minutes, but she rocked her little snowsuit!

It's hard to believe half of a year has passed. Last night while making dinner, Brian and I reflected on the journey so far. We both got pretty teary-eyed remembering back to August 4th, when we were told this little miracle girl may never come home. Every day with her is an absolute blessing, and we are so proud of how far she has come. I can't wait to see what the next 6 months bring us!

Big Brother

Poor Noah has really been neglected lately. Both in real life, and on this blog! I had a feeling Noah would be a great big brother, and I was definitely right. He absolutely adores his sister, and although sometimes he is definitely attention starved, he has shown essentially zero jealousy of her. It certainly hasn't always been easy, especially when I was constantly at the NICU for an entire month, but his easy-going temperament has helped so much. Noah constantly wants to hold Elodie, and when he gets home from preschool each day the first question out of his mouth is, "Where's the baby?" If she's napping he lets out a disappointed groan. It's really everything I always wanted. I love watching the two of them interact. I can tell they already have an unbreakable bond. 

During the month of January I could tell I was really starting to get burnt out with everything going on with Elodie. I was frequently completely impatient and short with Noah, and I felt really bad about it. I decided that I needed to start making time for just him and I. Talk about some amazing free therapy! So far we've only gone to a movie and birthday party together, but it has already done wonders for my mental health!

A Sunday morning birthday party at the Home Depot for a friend.

Brian has also been giving Noah some one-on-one time while teaching him to ski. Noah still has some gross-motor delays and tends to shy away from activities that are challenging for him so we weren't sure how it would go. Luckily kids under 5 ski free at all the big resorts here, so if he hated it we wouldn't be out too much money. Well, he loves it! My brother has also been going with, and took him down his first green circle a couple of weeks ago. Go Noah! 

He is such a sweet and loving kid, and still a total mama's boy. Lately he's taken to telling me, "I want to fall in love with you and marry you." He doesn't really know what he's saying, but the sentiment behind it is incredibly heart-melting. At times I get so distracted by everything going on with Elodie that I forget to enjoy these moments with Noah. He's growing so fast! We just registered him for Kindergarten next year and visited his new school. He is so excited to start and hates that August is so far away. I, on the other hand, cannot believe my first baby is going to attend elementary school this year. WHAT?! 

Noah is also a very imaginative kid who loves to play super heroes or dragons. When he plays he constantly hums. I'm not kidding. Our house is always filled with the sound of Noah's personal soundtrack. I wonder what his preschool teachers think of it. Brian and I are naturally quiet people, so sometimes his constant chatter and humming is exhausting, but I wouldn't have it any other way. He used to do this thing where he would end every single comment he made with "Right Mom?" or "Right Dad?" If we didn't immediately say, "Right Noah" he would keep asking over and over again. It's gotten better recently, but it drove us a little crazy when it was at its peak! He is still very silly, too. He talks in goofy voices, tries to tell jokes, and thinks it's hilarious to talk about poop, butts, and farts. Yup, he's a 4 year old boy all right!

Inside his "shell"

It's a lot of fun talking to him and seeing what goes on in his little mind. He has a good friend named Olivia, or Livey as we call her, and the two of them already have plans to marry each other. He talks about how they will live with each other, but not with us because you don't live with your parents when you get married. However he says that he'll live right next door to us. I asked him where Elodie will live, and he said, "Next door to me!" I also asked him who Elodie should marry just to see what he would say. His answer? "The first person she meets on eHarmony!" What?! Somebody pays WAY too much attention to commercials. No seriously, he quotes them all the time. He's really starting to understand rhyming, can count up to about 30 without help, and writes his name in the smallest print ever. He smiles and laughs all the time, and makes me feel so proud and lucky to be his mom. 

I love you Noah. You'll always be my first baby, and my favorite little boy!

Five Months!

This may be almost an entire month late, but better late than never. What can I say? January was just a crazy and busy month, and the aftermath of the swallow study kind of consumed me. I haven't talked a lot about my maternity leave, but after extending it twice due to daycare issues, I decided to take the entire school year off so that I can take care of Elodie and sort through the whole feeding tube situation. We still have the NG tube, but from what I've read and from what different specialists have told me, neurological issues related to swallowing tend to be the most difficult to recover from. So, most likely we will switch to a g-tube in the future. When she is close to sitting independently, we will begin feeding therapy at the Children's hospital to see how she does with purees. I look forward to that milestone! Figuring out the feeding tube was a little tricky. Feed too much? Puke. Feed too fast? Puke. We were both miserable for about a week, but right now we're in a good rhythm. We are working on increasing her volume to 20 ounces per day, and right now she's getting about 17.5. Once we get to a good volume, we'll start bumping up the rate. Currently we set the pump to feed her over about 40-45 minutes, but our long term goal will be to get closer to 20-30 minutes. I can't wait for that day, because with feeding taking so long we spend most of her awake time feeding and then letting the food digest a little. 

Elodie's fifth month included her first Christmas! (Wow, I really am behind!) We enjoyed three different visits from family, and everyone felt so grateful that Elodie was there to celebrate with us. I can't even tell you how emotional it made me to hang up our new family stockings. 

The two best gifts I'll ever receive!

Elodie went through three outfit changes on Christmas, and sadly I never got around to putting her in my first Christmas dress. But she looked adorable all day long!

All right, now onto the stats.

• Elodie was wearing 3 and 3-6 month clothing when she turned 5 months. There were still a few 0-3 she could squeeze into, but most of them were packed away. 
• She had an urgent care visit on her 5 month "birthday" due to some weird breathing (but checked out fine), so she was weighed and came in at 13lbs 1.5 oz. Still riding the 13th percentile.
• Elodie was eating between 14-17oz per day up until she got the feeding tube. We decreased her to a 27 calorie recipe of fortified breast milk. She still had 5 feedings per day, and I was still waking her up between 4:00-5:00am for one of them. Yawn. 
• This month we finally got belly laughs! Kissing her neck and making funny gulping noises (as if I'm going to eat her up) made her laugh the hardest.
• She continued to explore her voice by grunting and yelling a lot. We noticed that when she is really concentrating on trying to figure something out (usually with her arms/hands), she grunts and groans like nuts. It's kind of funny, but sometimes it's a little off-putting.
• Elodie became much better at reaching for and grabbing toys. She also got a lot more coordinated with her ability to get toys to her mouth to suck on. She definitely started holding onto things longer and began exploring them more, too. Before she would just grab things, but at this point she began to really look at them.
• Prior to five months, Elodie's trunk and head control felt like it was really lagging. When I held her she was often very rigid, and she tended to arch her back a bit. We saw some improvement in this area, and as she approached 5 months she started to even pull herself forward a little bit (like doing a mini crunch) when propped back against a pillow, or when sitting propped in my lap. She usually did this to reach for my hand.
• She continued to roll onto her side, but that's as far as she got. Tummy time was getting better, and she could keep her head up for longer periods of time.
• She still enjoyed sucking her thumb. No interest in pacifiers.
• Elodie began blowing raspberries. 
• Her eyes remained a vivid blue. Absolutely beautiful!

Happy 5 months, my love!