Mary Elizabeth - my sweet baby girl

I have been putting off this post and our blog for so long now...for many reasons. I am afraid of putting it down on "paper"...maybe this really IS a bad dream and we will wake up one day. It has been too hard to put everything together - I will start, then not be able to finish. And I have been busy...like really busy (I just thought I was busy before!).
All our friends and family knew we were having problems with ME...crying, eating (or NOT eating), "posturing" or stiffening, etc...A few months ago, after ME turned 4 months; after I had seen our pediatrician ALOT and our GI specialist ALOT, trying to find out what was wrong with ME, what was causing her to be in so much pain? Why is she so stiff? Why is she having episodes that look like seizures? ETC....I had a meltdown in our GI doctors office (complete with tears and snot)...asking, "Why can't anyone HELP us?!" We had been on the "list" to see the neurologist at Children's for a month or so at that time (and still had a month or so to wait). The doctor left the room...he came back withe his supervisor and said that if we really wanted to see a neurologist and get all of our questions answered immediately, he would admit us into the hospital that night. Of course, I said yes.
After three days of testing - MRI, EEG, eye exam, etc...and meeting with every doctor, resident, Fellow at Children's Hospital; we were given news that no mom or dad ever wants to hear.
Mary Elizabeth's MRI showed a brain injury consistent with cerebral palsy. Her EEG showed abnormal activity - not quite organized anough to be seizures yet...but not good. Her vision was not up to age level as far as tracking, holding gaze, etc...
Even though Seth and I were prepared (we had been suspecting CP for some time now), it hit us like a ton of bricks. I just stood there...numb. I remember my sister was in the room holding Mary Elizabeth while we spoke to the doctor. She was crying, I was crying, Seth was crying, ME was crying. Awful.
At first I felt this overwhelming sadness...for ME, for our family, for Ben. I was swimming in it for some time. Then came the guilt...why couldn't I protect her? It is my job as her Mom to keep her safe from all harm, and I failed. Now I feel as though I have accepted it, but am very easily sent back to sadness and guilt...ALOT. These last months have been a roller coaster for me and Seth. We are determined to stay positive and work hard to do everything we can to make ME happy and give her every opportunity to be successful (same as we would for Ben). And most days start off that way...then we have a bad therapy session, or I see a child in a wheelchair, or a see a healthy child running and jumping - and I lose it again.
Please pray for our family. Pray for ME - to feel better, eat better, for her brain to "rewire" and learn to do the things she cannot right now and for her to be happy. Pray for Ben - to learn to be more patient with his Mommy and sister (alot to ask a 2 year old), to have a wonderful relationship with his baby sister and to be happy. Pray for me - for strength and action...to get up each day and make doctor's appts. and therapy appts. and to seek out information so that I can learn everything there is to know about ME's injury (and be the expert), for patience with ME and Ben, for continued hope and faith that God WILL help and support our family and bring joy to our lives, and for a sense of peace, Pray for Seth - for strength, for continued success and stability in his career (we would be in a really worse place if we had not been here in Nola b/c of his job), and for general stability as a husband and father.

Over the past few months, we have seen an outpouring of love and support from friends, family, and people who do not even know us. Thank you to everyone for your warm words and prayers - please don't stop...we need it still! Thank you to our GI doctor who was the only doctor who was willing to go above and beyond to help us in the beginning. Thanks to Aunt Emily - for keeping Ben happy while we were at doctor's appts. and in the hospital. Thanks to Uncle Jason - for letting us use your "fame" to get special treatment at Children's. Thanks to my mom and Seth's mom and dad - for being so supportive and keeping Benjamin feeling special too. Thanks to Maria - for sending us Laurel...and to Laurel - for bringing us Cori. Thanks to Cori - who was a stranger a few months ago, but is now such an important part in this process for us right now. And the list goes on and on...we are grateful and blessed in the midst of this storm.

The Things Ben Says...

Benjamin keeps me laughing on a daily basis...usually many times a day (when I am not changing poo, which is a whole 'nother post...yes, unfortunately - I have tons of new material for that!).
He is OBSESSED with Cars right now (we have moved past trains) and knows each one by name...and if I get a name wrong, he lets me know. And I am only allowed to play with the cars he thinks are "slow", not "super-fast" like Lightning McQueen. Those cars are reserved for him and Virginia...
Speaking of Virginia, he LOVES his cousin "Ginnia"! And he thinks O-Man is pretty special too! He asks me every day if he can go to Aunt Emmy's house...at first I was upset; does he think Aunt Emmy is more fun than Mommy? Nah! Ginia lives at Aunt Emmy's house...and she IS more fun than Mommy!
Benjamin has become a very annoying (only sometimes funny) backseat driver. He is very much aware of the red lights, green lights, etc...and he lets me know when I can go and when I should stop. Also, he lets me know if I am going too slow (and the car next to us is "winning") or too fast ("just like Daddy"). The other day he became very excited while we were at a red light. "Mommy! I found MY race car! THIS is the race car I want Mommy!! LOOK!!!" He comments on "race cars" all the time, so I didn't give him much attention. He continued..."Mommy, this is serious (like the WonderPets say...)I found MY race car!" I look to where he is pointing and guess what?! It was a fine Aston Martin "race car"! Boy, does he have good taste!

Summer Update - Lots of pics

Benjamin giving ME a kiss...he has become very sweet to her - giving kisses regularly without prompting from me
cupcakes with our cousins!! I wanted to show all our old friends some of our new friends...so here goes
Benjamin with Jacques (our playgroup buddy) at the aquarium on Pirate Day! Jacques happens to have a baby sister, Colette, who is very close to ME's age
Ben and Leighton (some may say his girlfriend) at her carousel party at LaFraniere Park. Leighton has a baby brother, Miller, who is a few months older than ME
our neighbors, 2 year old twins Dalton and Remy
We have been going to Morning Call for beignets on the weekends...Ben LOVES it and can eat a whole order by himself!
Ben in his shades ready for the beach...notice he has everything that means anything to him in his hands...his paci, Allie, and Lemonade - like we would leave any of those items behind!!
Mary Elizabeth sleeping in her carseat during a swimming party at Aunt Emily's house...so sweet!
ME on her beautiful quilt her Aunt Emily made for her
The cutest little puppy I have ever seen...Ben got his face painted for the very first time at the Greek Festival with his Daddy a few weeks ago. Seth said he was very serious the whole time and sat very still.

We have had a very busy fun-filled summer so far. Our family spent a long weekend at Orange Beach, where Ben LOVED jumping the waves...and ME LOVED sitting on the beach under the umbrella with her Nana. We also went to Rosemary Beach to celebrate the wedding of one of my closest friends, Leigh Erin. Our play group is continuing to meet regularly here, going to the Aquarium, parks, each others' houses and the sno-ball stand. We have been blessed with new friends here in Nola (both for Ben and ME as well as me!). Ben took another round of swim lessons and is now officially swimming a few feet underwater (he is amazing!)...we were working on lifting our head up to take a breath at the end of our lessons. ME's therapy is in full-swing...and we have PT twice a week and OT once a week. Seth gives her a long massage every night after her bath (which she LOVES!), and we are trying to bring her swimming as much as possible. I will do a posting later on our therapies, as well as our therapists. Life is moving so quickly here, Benjamin will start school (Mother's Day Out/Nursery School) in September. I may be more excited than he is...it has been tough juggling ME and Ben in the mornings...and I am running out of things for Ben to do. And as most of you know, there is nothing worse than a bored 2 year old!!!

Updates

Mary Elizabeth - 3 months
Mommy and ME enjoying a little snuggle time
Benjamin jumping up and down at his swim lesson...notice he is NOT looking at his teacher
Benjamin searching for chocolate inside the eggs - we had a little egg hunt at the park with our neighbors earlier this week to get Ben ready for the big egg hunt today

Sorry it has been so long since I last posted. We have been busy here in Nola, and Mary Elizabeth is still having severe reflux (and problems associated with it). We saw the doctor last week, and he gave me some hope that things will get better. ME gained 2 ounces, which is a very big deal for us (2 ounces in one month)! We see the GI specialist at Children's next week, and I am putting alot of hope and faith in that appointment. Please say a prayer for us that this doctor can help ME.
Benjamin started swim lessons and is doing terrific (when he decides to pay attention to his teachers). He can swim underwater froom one teacher to another now (about 5 or 6 feet)! Our play groups are in full swing - we went to the splash pad at the zoo this week...it is enormous and it overwhelmed all of our kids! We are going to pick strawberries next week, and I can't wait! See our day at Miss Heather's last year here - http://7thstsyn.blogspot.com/2010/05/strawberry-fields-forever.html.
Today we are going to an Easter egg hunt for the community of Lakeview...I am very excited (Ben is a little excited too). I will post more when I get a chance...

Grand Isle

at playground in Grand Isle Seth has been asking us to visit him at work for some time now that ME has arrived. I have been barely making here in Nola, so the thought of packing up two babies and all their stuff to head to Grand Isle (not to mention 2 hours in the car with ME)was not so appealing. We finally made the trip this past weekend and had a great time! Ben LOVES the beach...ME did ok once we got there, and it was SOOO nice to have someone to hang out with at night after I put the kids to bed. Thanks Seth for being such a great host - We had a blast!

Benjamin

Just some sweet pics of my growing boy...we start swim lessons tomorrow!! Tonight when we said our prayers, Ben started naming his friends. After a few names he was clearly stumped. He said, "I have lots more friends, Mommy. What are their names?". Too cute. So we went through the long list of old and new. He sure is one lucky kid!




Benjamin has officially hit the Terrible AND Terrific Two's...he is sooo sweet and smart and funny - then in an instant he is whiny and pushy and not so sweet. I keep telling him, "You are lucky you are sooo cute!"
I can't blame him too much, though. His whole world is different now. New city. New house. New sister. New big boy bed. New friends. Etc.
He is GREAT one on one...problem is, I can hardly ever give him that time (ME requires constant attention). So he acts up to get attention, or he acts sweet to get attention, or he says something funny. Poor guy - he has to keep trying until something works. Now before you start feeling too bad for Ben, keep in mind that he has made new friends, gone on great new adventures and has a beautiful new baby sister! We started a new playgroup here in Nola and have been to each other's houses, to the Zoo, The Children's Museum, Longvue Gardens and the park. Ben also enjoys spending time with our neighbors - 2 year old twins!! Finally I have been going to our church's Mom's Group, where Ben and I both have met new friends. AND...I almost forgot - Ben starts swim lessons next week. Now that I write it all down, we sound really busy! I can't wait until I can spend some qualilty time with my favorite big boy - I miss those sweet moments, snuggle moments, etc...

Laying Low and an Update on ME

Last week was a tough one for me....heck, this week has been tough too. ME has some serious reflux that is causing her major pain (and me too and Ben too as a result of her crying for long periods of time after every bottle). I started the week off with a firm intention of being more patient with Benjamin and working hard on getting ME to sleep somewhere besides my arms (she is NEVER put down). I failed miserably on both accounts. I cried...lots...so did Ben:( Then I tried again the next day. and again...you catch the pattern. After yet another call to the doctor about ME's crying (at first he thought we had colic, then a milk protein sensitivity, now reflux), we were put on Zantac. So far, I only see a minor improvement. She is still crying hysterically after EVERY bottle and arching her little back pretty much all the time. Ben is frustrated...I am frustrated. The weekend came and went....it was great, by the way. We had Mary Elizabeth baptized at our church (post on that later) and saw friends and family. Seth was in town, so I got a little break and reassurance that I was not over-reacting to ME's pain. Monday afternoon we brought her to the doctor (she now weighs 9 lbs, 7 ounces - which is a relief, b/c she has stopped eating as much because she is in pain; she takes only 1-2 ounces per bottle, and I was concerned about her weight, etc...) the doctor said to give the Zantac a week (which will be this THursday), and we left with no help. SIGH. So I sit here waiting for tomorrow when I can call the doctor back and say, "HELP!". There has got to be something that can help my beautiful baby girl feel better.

Here are a few pics of this week...
ME sleeping sorry no action shots, b/c when she is not sleeping, she is usually crying...but she is still very cute!I let Ben play with his play doh stuff he got for Christmas - he had a blast!

Global Wildlife

This weekend we met our friends at the Global Wildlife Center (www.globalwildlife.com) in Folsom, LA. If you have not taken your kids here yet, GO!! We (grown ups)had a great time, the kids had a great time, and it was an educational way to spend an afternoon. I would suggest going early, beacuse I can only imagine how hot it would be in the summer. A very big tractor (which Ben wanted to drive) pulls a train of covered wagons through the grounds on a safari. There are large buckets of food for the kids to feed the animals, and they come right up to the wagons! My favorite animal at GW was the zebra - their stripes were so vivid! They had all sorts of animals - deer, zebra, bison, longhorn cattle, giraffes, kangaroos, llamas and even two camels, Sally and Alladin.

And so she is not left out, thhis is what ME was doing during our excursion....

beautiful!

Mary Elizabeth - 2 month stats

Mary Elizabeth had her two month appointment this week with the doctor. She did great!!! She now weighs 8 pounds, 13 ounces and is 21 1/2 inches long - Way to go ME!! She is starting to smile now, and is very alert for longer periods of time. She is always scanning the room, looking at her Mommy and Daddy, big brother or at the curtains. She is still eating every 3 hours during the day and every 3-4 hours at night - I am hoping we start to go longer at night now that we have put on some lbs! She loves her activity mat and her pacifier (just like Benjamin!) and enjoys being outside. I am so blessed to have such a beautiful, healthy baby girl to add to our family. Benjamin is beginning to interact (without being prompted) with ME - he will lie on the floor with her and kiss her head...he wants to sit in the same chair with us while I am feeding her, and he LOVES to give her the paci when it falls out of her mouth. Also, whenever we leave the house, Ben always reminds me to "get Mary Elizabeth, Mommy" (as if I would leave her:).

Sweet Pics

Finally got Ben to sit by Mary Elizabeth and take some pictures again...too bad he didn't want to at first, but when I started taking pics of ME...he hopped onto the chair! My two babies

Mary Elizabeth at 6 weeks

Daddy with his naked babies...look how much bigger Ben is compared to ME!!

Mardi Gras 2011

This past weekend and week has been a blur. We have a wonderful first Mardi Gras as New Orleans residents! Seth had a training in Gulf Shores last week, so on his way home, he stopped by to spend Thursday night with us. We dressed up and went to the Muses parade uptown, and afterwards I went to the Muses Ball with Emily and some friends. Ben waiting on Daddy to come, purple hair!
Family shot before we headed to Muses
Me and Em at the ball - we had sooo much fun!
Seth had to work Mardi Gras weekend, so I was on my own...My Uncle Mark was invited to ride in Endymion, so he and my Aunt Duby stayed at our house Mardi Gras weekend. On Sunday I loaded up the kids with my mom (and Aunt Duby) and met Emily uptown for more parades.
Me and my two babies
Me, Ben and Virginia ready for the floats
On Sunday night, Leigh Erin and Ella arrived...Ben was so happy! We went to the IMAX Theatre and rode the trolley on Monday while Mom watched Mary Elizabeth. On Tuesday morning we headed uptown again for more parades! It was Ella's first time, and she was in heaven!
Ella and Ben on the trolley
Driving the trolley with Mr. Bryan
Virginia and Ben on Mardi Gras
Ella and Ben ready to go

Ben and Ella dancing under the umbrella...too cute!
All in all, we had a great Mardi Gras week! Thanks to all our visitors - we enjoyed your company and a BIG thanks to Nana for watching my baby girl so I could spend some quality time with Ben.