Kisses and candy and hospitals....

So over the last two weeks, we have had some excitement. Imagine that right? We made TWO trips to the E.R. this past week and had multiple doctors appointments. First I will explain the E.R. visits. The first visit was for Joey. I noticed when I was changing his diaper that he had this huge bulge to the right of his belly button. So naturally I freaked out and called the pediatrician and they told us to go straight to the E.R. at CHOP. Well good news it wasn't anything super serious. Its an abdominal hernia. Bad news is it's ONE more surgery that he has to have at some point. :( While I am very sad it's another surgery, I am very thankful it wasn't anything serious. Now the next trip was for my husband, Matt. He woke up Saturday morning in horrible pain in his side and said that he wanted to go to the hospital. Well for my strong brave man to say he wants to go means something is very wrong. So we load up and head to the E.R. closer to our house. After waiting around the doctors came in and said it sounded like he had a kidney stone. They told him they wanted to give him an IV for the pain meds. He immediately said no. I would like for you to think, "OH my what a strong tough man, sticking through that pain!" When in reality he doesn't like needles and would have rather dealt with the horrible kidney pain than a needle in his arm. (Men... I will never ever understand) Good news is he passed it and is now back to normal.

Now we had our first BIG doctors appointment at CHOP this past week. And it went well. He saw his pediatrician at the Spina Bifida clinic. I must tell you that this doctor has been the same doctor that was there when the clinic first opened some 50 years ago so he totally knew his stuff. He was happy with the progress Joey is making. We also found out that he is almost 8 lbs now! Then we met with the orthopedic doctor, who decided that Joey needed to go ahead and be placed in his casts. He decided to put both legs in casts to help stretch his muscles so when it does come time for Joey to start walking he would be able to with assistance. We have decided to tell him that when he gets older and sees pictures he was driving his motorcycle too fast!  Just like his scar on his back is from him fighting a shark. Its just a fun way to help him cope with his scars that he will have.  Here is an adorable picture of the occasion:

Then we met with his neurosurgeon.This is also the doctor that did his back closure. Dr. S measured his head and decided that it was time to place the shunt. So tomorrow, Wednesday the 15th, Joey will go back in the hospital to have the shunt placed. Its an "easy" surgery for them and everyone seems very comfortable with it. Joey will only be in the PICU for a night as long as everything goes fine. Matt and I are very happy that they have decided to do the surgery because we have noticed a HUGE increase in the size of his head and we knew he was going to have one so we are glad to have it done. The shunt is placed either at the side of his head above his ear or in the back of his head. It will redirect or drain all the spinal fluid into the opening in his stomach. I know the aftermath of the surgery won't be pretty but he will have another pretty cool scar to tell all of his friends about when he gets older. 

The last doctors appointment we had was with general surgery for his hernia. The doctor has decided to see us back in 8 weeks and then decided what to do with it. If he has his surgery now there is a possibility that it could just come back since babies stomachs are so thin. So we will wait and see what they decide.

Well that sums up our first BIG appointment and I couldn't be happier with the results of the day. We got a lot of answers for our questions and made some important decisions for our little guy.  I will update everyone after Wednesday to let everyone know how his shunt surgery went. I also wanted to show everyone what one of our months look like with all of the doctors appointments we have to remember.

We also celebrated Joey's One Month Birthday yesterday! He's such a miracle baby!

 I hope everyone has a fantastic Valentine's Day!

Lots of Love from the Moores!

Ellen Show and the ZipZac

OKAY! All my friends and family...please take 30 seconds to fill out this letter to the Ellen Show. A fellow Spina Bifida mama has written this letter (below in my comments) trying to support the ZipZac. Its a basically a bumbo seat with wheels to help our children move around as well as other children. Its an awesome invention and there are some families that can't afford it because it's pretty expensive and insurance doesn't cover it! Help us out!! Fill out your info and copy and paste the letter in the "tell us your story" here's the link to the Ellen Show http://ellen.warnerbros.com/show/respond/?PlugID=10 (The letter is below) Thanks! 

 

 Dear Ellen,
Imagine being a toddler paralyzed since birth and unable to reach many of your toys. Imagine being a parent watching your child struggle and being told by medical specialists to ‘just put your child in a stroller’ since they are unable to use their legs. This is what we went through on a daily basis, but now there is hope.
It all started with the need to give toddlers that are too small for a standard pediatric wheelchair a chance to keep up with their peers. Children needed to have the ability to explore their world, without limitations, something to encourage their blossoming and eager minds.
Now for the good news! Two passionate engineers took on the challenge after seeing one little boy facing this dilemma. It turns out that their invention allows an infant and toddler more independence and mobility than a pediatric wheelchair, and is out-of-this-world awesome! They now call it the ZipZac™ and many children and families are desperately in need of one as well.
The ZipZac™ has reached many children already, even around the globe. Unfortunately, many families are not able to find the resources to purchase one as most health insurance companies only pay for one wheelchair every 5 years.
I’m writing to you today to ask for your help. Please check out the ZipZac™ website (www.myzipzac.com) and their facebook page to read some of the testimonies! Would you consider making the ZipZac™ a feature on your show and give many more families hope?

 Share Share Share!!

Joey- The Professor

As I was completing the lengthy morning task this morning, I was thinking about how blessed Matthew and I really are. I was thinking back to a couple of months ago when we first were faced with this difficult diagnosis and how we were going to handle this.There were a couple of questions that we were very unsure of the answers. How would I handle this? How would Matt handle this? Will our families ever understand that their first grandchild was going to be disabled? Will this guilt ever go away? How will our marriage survive? How bad IS it truly going to be? Will Joey blame me one day? And of course the question you are never supposed to ask...why God?

Now, while not all the questions can be answered right now but I do know that we will be okay. As I was cleaning his scar this morning, I was also thinking about how much Joey has already taught me.

Things my two week old child has taught me:
1- Responsibility.We have to keep up with doctors names, numbers, and appointment. Cathing (although now we only have to cath every 6 hours now! BOOM!) cleaning and maintaining his back incision. Checking his fontanel to make sure its not bulging or swelling. When he spits up having to guess if is just normal baby stuff or his hydrocephalus. Any type of red mark having to ask; is this just a red mark or did he come into contact with latex..which we still don't know if he's even allergic or not. How is his poop looking since he has bowel issues. Making sure he takes his medicines on time everyday. When should we call the doctor when it could just be a "normal" infant thing? We have to make these assumptions every single day. AND on top of all those things, we have the typical baby things to be concerned about. SO yeah if that's not responsibility, I don't know what is.

2- Compassion. I never knew how much I could love something as much as I love Joey. I will admit when we first found out about spina bifida, I had a lot of hostility and very little tolerance towards other peoples problems. I mean I still feel that way when I see someone complaining on facebook about how stuff they can control sucks but when I hear about other things that they can't control my heart goes out to them. I will continue to pray for them, just like everyone has done for us.
 
3- Patience. Patience with everything. Patience with Joey when he's crying because he's hungry or mad because he's being messed with. Patience with Matt. He's been a wonderful dad but in his defense I have been a "mother" since June but now that Joey is here, this is something completely new to Matt. But bless him, he tries his absolute best. And I love him for that. Patience with family. Patience with our dogs. Even patience with technology.

4-  Being a better housekeeper. Now anyone that knows me knows I am the world's worst cleaner. I hate to clean. I mean I REALLY despise cleaning. I mean why clean up something when you are just going to mess it up again? But now that Joey is here, I want to make sure the dishes are done because it really makes things easier on me at 4 am when he's hungry. I also never knew how a tiny baby who never goes anywhere has more laundry than Matt and I combined. Craziness.

Now that is not everything he's taught me, but those are pretty important things to me. Those are things that I have never really thought about. And if you would have told me a couple of years ago, that I would be responsible for caring for a "disabled" child I would have told you no way. If anyone would have told me about the decisions that we have had to make just for one sweet baby, I would have again told you no way. Matthew and I are very happy with the decisions we have made and while they haven't been the easiest they have been the smartest. And I know I would have never done it any other way. I also think I have somewhat of an answer to that other question- why God? I think it's because he knew that no would ever love this little boy more than us and that he knew we could handle it. Through him of course. And I thank him everyday for giving me the opportunity to do this awesome job as Joey's mother!

This is a poem I found that I really enjoyed and I hope you do to!

Poem: The Special Needs Mother

Before
When I worked,
When I worked at a Job, that is,
I thought I worked hard.
And I did.
I thought I was anxious.
And I was.
But nowhere near
Nowhere Near as hard as I work now
And nowhere near
As anxious as I am now.

But for some reason
For a very good reason
I am happier now.
Lighter now.
More joyful.
And a wee more playful.

And Liberated.
Feminism has nothin' on me.
I am liberated.
Liberated from the trivialities.
Like worrying about what people think
What they think when I dance my funky dance
Or wear my high heels in the gym

Or play with my child

In the supermarket forgoodnesssake
Or when I tell you, a stranger, what I really think
Like you have the most beautiful hair.
Seriously.  Shiny and sexy.
And liberated enough
To smile at your surprise.

I am all these things.

For a very good reason
My child, see, is special needs
And so much more.
SO much more.

So much joy
So much laughter
So much light

He is perfect.

He opened my narrowed eyes
My tight grip
My rocky heart
He taught me to let go
Of narrow expectations
Of trivial worries

Like getting into the right school
Or having the right stroller
Or learning the right musical instrument
At just the right age


So he can get into the right college
And the right job

As if  there were such things.

He taught me what really is right
Like playing
And laughing
And enjoying the now
And loving the simple things
The magical things that we take for granted
Like echoes
And doors.

And if you're wondering
Like I probably would have
In another lifetime
No, I wouldn't want a different child
Or an additional child
Because my child is special needs.

Because, you'd know,
Like I do
With all my heart
That I already have the perfect child.

And that makes me
The happiest mother.

Home Sweet Home

So I know its been a while but I have been a little busy..you know having a baby and all! We are so excited to have Joey home with us! I just wanted to update everyone on how things are going with Joey and our adventures in the first two weeks of his life.

I was admitted Friday January 13 at 6 am and was scheduled to have the c-section at 8 am. Unfortunately, they had an emergency and I was pushed back to 10 am. Which actually worked out in my favor, since my dad missed his connection flight in Atlanta the night before and didn't get in until right as I was going in. I would like to say I wasn't scared but that would be a lie. I was scared but I knew there was going to be a wonderful reward in the end. I have never had any type of surgery. Ever. Matt wasn't allowed back with me until I was all doped up and ready. But from what I hear, he was just as scared as I was. But I knew I needed to suck it up and be a big girl, for Joey. The doctors were awesome and at my request there was Aerosmith playing in the operating room. Which the lead doctor that was great! Finally Matt was allowed in. He was so cute in his scrubs. Once we were back together all the bad feelings were gone and we were ready to have a baby. After about 30 minutes of tugging and pulling, our beautiful baby boy emerged at 11:24 am weighing in at 6 pounds 7 ounces. As soon as he appeared we heard a slight whimper and then a huge cry! They whisked him away into another room where a team of nurses ascended on him. Matt was allowed to go back with him, while I listened closely as I could hear his cries. It was music to my ears.

After he was all cleaned up, they wheeled him to the NICU where he was diligently taken care of by some of the best nurses. My nurses forced me to wait until 8 pm to go see him. After, what felt like an eternity, I was allowed to get into my wheel chair to go see my baby. Joey was the most beautiful thing I had ever seen. We couldn't hold him since his back was still exposed.

We waited patiently until his back surgery on Monday January 16th. This surgery took about a hour. Matt and I were a nervous wreck waiting for him to be taken to surgery. I don't think we slept a wink the night before. It was over before we knew and it was a huge relief. His scar is about 6 inches which looks huge on his little body but it looks great! It starts at T-9 and stops at about S-2. But its just a straight line. It hardly bruised. But I will be the first to tell you that my son is probably the toughest guy I know! We had a lot of confidence in his doctor. We were very fortunate to have a doctor that is the best at his job.

After that surgery, it was just a waiting game. Wait to hold him, wait to feed him, wait to change him, wait to cath him. Not to mention that we all had about a million questions going through our heads. There were a lot of different doctors and consults. As of right now Joey has a neurosurgeon, urologist, physical therapist, and pediatrician. Throughout the 8 days we were in the NICU we got both good and bad news. We found out he actually only has one clubbed foot instead of two, which means he only has to have one leg cast. We also knew before surgery he was voiding his bladder a by himself and after the surgery there was a possibility that it could reverse, which it did. So we learned how to cath and we have to do so every three hours. We also discovered he has a deformed rib. One rib on his right side is rounded but it didn't seem to concern anyone, not even Joey. We also left the hospital with NO shunt. Matthew and I had mixed  emotions about that but they gave us very specific details for what to look for if his ventricles begin growing larger. But as of right now they have not gotten any bigger since birth. Thank you Jesus! :)

After all the chaos of the hospital, we were allowed to come home. Of course it snowed the night before and the weather was horrible but we made it home in one piece. Thanks to my dear husband's exceptional snow driving abilities! Now that we are home, things have really been going well. Joey is certainly a sleeper like his mommy. He loves to sleep. He is also an eater. Just like daddy! I am sleeping as much as I can which is about every two hours since we have to cath him every three hours. We have actually established some what of a schedule.

I like to think that Joey knows how many people love him and care about him. The Moore's really appreciate all the love and support we have received through all of this. it has certainly been a challenging experience but Joey is absolutely perfect in our eyes. And seeing that sweet smiling face with his one dimple (like both mommy and daddy) makes everything worthwhile. Well I am wrapping this post up with a smile on my face knowing we are going to be just fine. Thanks to everyone who has helped us. The next post will be after our first appointment with the Spina Bifida Clinic. Thanks for reading!
Here are a few pictures for your viewing pleasure!

Wowzers....

So.....

We had our appointment today. Needless to say, it certainly wasn't a dull one. It started as a normal ultrasound/prenatal appointment. I peed in the cup. Exposed my gigantic tummy and got the goop spread on my gigantic tummy. The tech proceeded to check Joey's ventricles and head like she always does and she measured they had jumped 7 mm since four weeks ago. They were measuring 20 mm and were now 27 mm. WOWZERS!! That's a pretty large jump. She then continued her journey through the rest of Joey's body and everything else looked fine/same. She sent for the doctor like she always does. A doctor we have never met came in and delivered the news... 

We are having Joey tomorrow.

YES- t.o.m.o.r.r.o.w Friday January 13.

Friday the 13th.

Oh my. Matthew and I weren't prepared for that news. Although we are very very excited.The doctors were just concerned that his ventricles had enlarged so quickly that there could potentially be something going on that they can't see via ultrasound. So we are just a day shy of 37 weeks, which is full term so they weren't overly concerned with him being a premature baby. He also wouldn't be in the NICU any longer than we had originally thought. So all good news. Oh and they said it looked like he weighed about 7 lbs. Geez Louise!

So after getting in touch with my dad and mom and getting them on flights and making arrangements, we decided to go on a date. :) It's been a while since we went out and we figured it was now or 18 yrs from now! So we gorged on some delicious steak and came home to finish preparing for Baby Joey. We have to be at CHOP at 6 AM and my c-section will be a 8:30. They said my recovery will be about 4 hours and then I can travel to the NICU to see Joey. Unfortunately, they aren't sure when they will close his back but we are hoping sooner than later.

Okay, well I have like a million things to do so the next time I will update, there will be an adorable baby boy beside me :)

HO HO HO! We have a date!

So it's been almost a month since I last updated everyone on us. We have been kind of busy but I have been taking it easy since I swear I feel almost as tall as I am wide. I am 33 weeks this week and I am in full swing pregnancy mode. Heartburn...check. Bathroom breaks every 10 minutes...check. Insomnia...check.Feet crowding my ribs...check.  No clothes fitting (even my maternity clothes)...check. Husband with an almost dislocated shoulder from pulling me up and down...check. If I haven't mention it before I have the greatest husband in the world! He has been fantastic. For my Christmas present he bought me a back massager from Brookstone and I do believe it has been the greatest gift he has ever gotten me. It has really been a life saver.

Now on to more important things...Joseph Robert. Last weekend, we went and did the 3d/4d ultrasound. Which at first we weren't sure if we wanted to do it since they sometimes look like little aliens but we did it anyway. And boy I am sure glad we did! I love these pictures. Matthew and I do make a beautiful baby. Of course the whole time Matt was saying that he is going to look just like him. Well Matt was right. (Please don't ever tell him I said that he was right!) Joey had the biggest cheeks and the cutest nose ever! He didn't feel like he needed to actually be awake for his picture taking experience. He slept the whole time. So he didn't really do anything amazing besides just being his adorable self :) Here are two of the adorable pictures:

We also had a doctor's appointment this week. Nothing super exciting. As the doctor said, "No news is good news." Basically nothing has changed. His ventricles in his brain did enlarge 2 mm. So now he is right at 20 mm. But they didn't seem too concerned. This also was the first time they could actually get a good look at his lesion and it looks like it's lower than they thought starting at T-12 instead of T-10. His opening is also smaller than we thought, only 6 cm long and 3 cm wide. All great news! He also moved head down. He is no longer breeched. Not that it matters much since we have a planned c-section. They also said it looked like his legs are still crossed so for him to turn himself with his legs crossed is pretty amazing. I mean could you imagine swimming and trying to move underwater with your legs crossed? Not as easy as it sounds. Joey also moves all around and I think he has the hiccups about 4 times a day. They tickle a bit! Its so funny. But for the most important news of the appointment was the date of our c-section. January 23, 2012. That will be Joey's birthday! For those that are counting that is 5 weeks or 34 days. AHH!! I can't believe that it is only 34 days away. Very very scary! But also very very exciting!

Well Christmas is only a few days away and I am super excited! My dad and his girlfriend are coming up for the WHOLE week! I am stoked! We are going to Philly and they will get to see CHOP and they are even coming to a doctor's appointment and will get to tour the NICU. We also have other fun activities planned so it will be so nice to have them up here. I haven't seen them since we left in September. I think I'm having withdraws!

On a more somber note, this past week was also a rough one for my family. My grandfather passed away on Thursday. Sadly, I was unable to make it to Georgia since I can't fly and the car ride would be too hard on me. So I had to be there in spirit. I really hate that I couldn't be there for my dad and brother. They did get to catch up with some long lost relatives that my dad hasn't seen in years. My grandfather was a great man and he really will be missed. I'm so grateful that he got to make it to my wedding this past June. Unfortunately, he won't get to meet his great grand son but like Matt said, "That just means that there is one more person in Heaven pulling strings for us." And you know when he says stuff like that it just melts my heart. Just one more reason I married him.This is the last picture that we took with my Papa Best:

Okay, well once everything settles down after the holidays I will update again. Maybe I will have some pictures of our adventures while my dad is here!

 Merry Christmas from The Moores!

Turkey, baby presents, and oh yeah more needles!

So this past Thursday was Thanksgiving and we had a pretty good one. I mean how lucky am I to be pregnant during the greatest eating holidays of the year...first Halloween, Thanksgiving, and then Christmas. Joey was very happy needless to say! I was very sad that I was away from home for Thanksgiving especially since I have NEVER been away during Thanksgiving. But it was great. I cooked the sides and we had a delicious juicy turkey. The only thing missing was my Mammow's pecan pie :( And I refused to buy one from the store. I think it would have just made me mad. Luckily for Christmas my wonderful dad is coming up and I can't wait! I have never been more excited then to see him! We haven't been apart this long but having Matt really helps. When I am feeling down and homesick, he is always there to make me feel better and make me laugh. He always makes me laugh...gosh I love that man. 

Anyway back to my story....I got a fantastic surprise baby shower Saturday that really was a surprise. I mean I had NO idea and still can't believe Matt was able to keep it a secret for so long. I was under the impression that it was a bridal meet and greet for my sister in law. And I will have to completely honest here and tell you that I had gotten a fresh batch of crazy baby hormones that morning. I was in a fowl mood. I had even told Matt that I really didn't feel like being social and he just let me carry on and on knowing the whole time what was going on. Very sneaky sneaky sir. Well, we got to his mom's house and I walked in and SURPRISE!! There it was. Decorations, food, and my northern family. It was so great. Joey got all kinds of goodies. We got a mini crib to keep up north and the cutest pack and play with safari animals. Then my all time favorite gift was the glider rocker with matching foot rest. We also got lots of clothes and a swing. It was great! I am very excited to use all those gifts! Can't wait for him to get here!!

Now about those darn needles. Good news is I am NOT diabetic :) Bad news is I have a bruise on my left arm that is still there. I looked like a pin cushion. I still can't believe that I made it twelve hours without food or drink. I also can't believe that Matt made it through either. When we got to the hospital I insisted on Matt eating breakfast because I still wanted to be married after this test. When we are both hungry we can be rather hostile with one another. So I didn't want to take any chances. It was definitely the longest three hours of my life. But since Matt was there it made it tolerable. I am just happy I made it out alive.

30 week

Well, Joey has been moving and rolling and getting excited about meeting everyone! It is so funny when I am laying down and we can see him move from one side to the other. Matt gets a little freaked out but it's fun none the less! We have another doctor's appointment on Thursday but it's not for Joey, it's for me. One of the many doctors we have to meet before Joey gets here. And next weekend we have a 3d/4d ultrasound in Pennsylvania and I can't wait! More to come then! :)