Sunday, March 28, 2010

BabyBoy at 25 weeks

25 weeks. That belly is growing!

Horizontal view

And one with my Paisley girl.

For some reason Paisley decided to start smiling for pictures tonight (thank goodness)! 

Sesame Street Live: When Elmo Grows Up! 03/28/10

So just a few days ago Rodney decided to surprise Paisley (and me) with tickets to see ELMO!! Paisley is absolutely obsessed with Sesame Street, especially Elmo. She has been so excited to "go see Elmo, Grover, Big Bird, and Elmo." I'm really glad we hadn't had the tickets for weeks or months. I really don't think she could have handled the wait. It was the most amazing feeling to see her so excited about something. I of course cried watching her face when the show started. She just seemed so grown up. I am so thankful that Paisley has such a wonderful Dada to take us to see Sesame Street. Not every little family would get that chance. 
Today was a day I will never forget...that smile!

I took a ton (no really, 184) of pictures and plan on making her a photo book of the show. Here are some of my favorites from Sesame Street Live: When Elmo Grows Up!

 Screaming in the parking lot! Can you hear those screams??

 Sitting in her seat like such a big girl.

 Pause for a picture with Momma

 And then the show began! Check out those eyes...her first sighting!

 The opening song

 Telly wants to be a cowboy when he grows up!
Cookie wants to be a fire fighter!

Intermission time...we gave in to the cotton candy. We didn't even have to leave our seats to get it!

La, la, la, la, la, la, la, la, Elmo's World!

Even Dorothy came!

Oscar the Grouch sang a song called "I Love Trash." Paisley sang along the whole time..."I yuv trash!"

Singing and clapping along.

The last song. See the streamers...they went all out!

And then came the tears...she was so not ready for it to be over.

But so ready for a nap!

What a wonderful day Momma and Dada had with you sweet Paisley girl. We love you so much!!!!!

Wednesday, March 24, 2010

Dr. Moriarty...we'll see "when he gets here!"

Dr. Moriarty appointment today went well. He is a typical neurosurgeon, not that I've met many...or any, but exactly what I would have expected. Odd sense of humor, a little quirky, but very serious about his job. He's the man for us! I am glad we were given the opportunity to meet him given that he isn't doing anything right now for the baby. He will decide his surgical plan of action after he is born. Every spina bifida case is different, therefore until he actually sees what the defect looks like, he can't give us a whole lot of insight.
What we did learn today...
* They will do an MRI or CT scan very soon after he is born to get a better look at the spine before surgery.
* We should expect surgery on his spine within 24-48 hours after he is born. This surgery typically lasts 4-5 hours.
* Dr. Moriarty usually inserts an EVD (External Ventricular Drain) to relieve any fluid on the brain that then travels through the spine (cerebral spinal fluid). This is similar to a temporary shunt, except this drains the fluid out of the body, where a shunt drains the fluid to another location for the body to absorb. He believes this helps the spine area to heal faster without the added pressure from the fluid. This makes perfect sense and is something we have not read about in other cases we have researched.
* He will most likely not consider a shunt until 10-14 days after he is born. After the spine has had time to heal and Dr. Moriarty has been able to monitor the fluid draining through the EVD. This will give him much better information to see if the shunt is even necessary. Approx. 10-15% of Spina Bifida patients will not need a shunt. We will just have to wait and see.
* Dr. Moriarty isn't a big fan of trusting what the ultrasound shows. He wants to see things for himself after the birth. He told us this information several times, but right now what we know from the ultrasound is all we know. I understand why he says this...1. could be worse than what they think they see in the ultrasound. 2. could be BETTER than what they think they see. However...what the ultrasound shows is all we know! He does not want us to worry about the fluid levels/changes we see in the ultrasounds. We can worry when we actually know what to worry about when he gets here. We'll see about that!
* The lower the defect, the less likely he will need a shunt. That is something new we learned today. I didn't know that was related. His defect is really low (S1-S2). Before Dr. Moriarty knew where BabyBoy's defect was located he just mentioned a defect at S1 should have minimal chances for bowel and bladder issues and even less chance for leg muscle weakness. But again, we'll just have to see when he gets here. Hopeful news to hold on to though.
* There is no need to see Dr. Chariker (Pediatric Plastic Surgeon) for a consult while I am still pregnant. He will be notified when the baby is born and be there for the spine closure. Thankful for one less appointment! We will also not see Dr. Moriarty again until he comes to check out the baby after he is born. He will be notified when he is born, but will not be there for delivery. When I asked Dr. Moriarty if he would be in the delivery room, he said "not even as a joke!" He was not at all interested in any part of that. He has an odd sense of humor, remember.
* The worst news for last...we are looking at a minimum of a 2 week hospital stay. He will need to be on his belly for 10-14 days after surgery. That means absolutely no holding him for at least those first 10-14 days. This is heart breaking, but we know that is just the way it will be. At least we know now and have time to prepare. Does that make it any easier? Not at all. But it's what we will have to endure to allow him the proper time to heal. He said he will make a rubber stamp that says "no, not today" if I ask too much. The sense of humor again. He laughed a little. So, I will try to be good.

We are very thankful for the opportunity to meet the man that has such an important job to do for our son. We fully trust his expertise, as he comes very highly recommended. We are also thankful for such an amazing surgeon to be so close to our home. I have read about many families who have to travel/move to another location to find the best doctors/hospitals. Luckily we only have to travel about 40 minutes to have the best of the best.

Please continue to pray for all of us as I do my best to keep BabyBoy safe and healthy for now!

Tuesday, March 23, 2010

Appt. with Dr. Dunn

Yesterday I saw Dr. Dunn for my normal 24 week appointment. She was able to give me a copy of Dr. P's reports, which I am very thankful to have. It is a good feeling to know everything possible, no secrets. Dr. Dunn went over the report with mom and I, and answered whatever questions we had for her. I have lost 1 pound since I was there 3 weeks ago, which leaves me at +2 pounds since the beginning of my pregnancy. It is amazing since my belly is growing at an alarming rate!!! The little stinker was moving all over the place and was making it difficult to find his heartbeat. Dr. Dunn did a quick ultrasound just to be sure the heart was working well, and of course it was! I also passed my glucose test...thank goodness!! I don't know if I could have made it without sweet tea or chocolate (I would have, I just wouldn't have been happy about it)!
After the appointment we went shopping, it is Spring Break after all. Cindy at Dr. Dunn's office told us about a children's clothing/toy store we needed to visit, JB and Me off Brownsboro Road. It is amazing!! We found Paisley's Easter dress and I think Nana and Ol' Mamaw did a little Easter basket shopping also. We will most definitely be returning to that store in the future! All in all a great day!
I am trying to finish up the list of questions for Dr. Moriarty as that appointment is Wednesday. Rodney and I have asked mom to go with us just to have an extra set of ears hearing all the important information he will be giving us. I am very anxious to get more information and to meet the doctor that will be operating on our newborn baby boy. PRAY for continued good news from Dr. Moriarty!

Friday, March 19, 2010

Dinner at the Overlook

We enjoyed a very nice dinner at the Overlook with my mom and dad (Nana and Pop) tonight. 
Captured some decent pictures too. Enjoy!

Blowing a kiss to me!

A kiss for Dada!


Our little family of three (and an ever-growing belly with baby brother).

Tuesday, March 16, 2010

Official start of the BLOG

Welcome to our new blog site! The below posts are emails that I have sent to our family and friends regarding our son's diagnosis of meningocoele spina bifida and hydrocephalus when I was 22 weeks pregnant. I was sent to Dr. Pietrantoni (perinatologist) after my regular OB's office was unable to "get all the correct measurements" they needed. I am very thankful to be under the best care possible during the remainder of my now "high risk" pregnancy. I see Dr. Dunn next week on Monday the 22nd. I will continue seeing her for regular OB care, but will see Dr. P on a regular basis for "baby care." Next Wednesday, March 24th, Rodney and I will be seeing Dr. Moriarty (pediatric neurosurgeon) to discuss the surgeries our son may have in his first few days of life. We will be learning a lot of new information at this appointment, however I fully anticipate it to be extremely overwhelming. Will update as I know more. KEEP PRAYING!

Email to Family and Friends 3/15/10

I don't have a lot of new information, but we have had a very encouraging weekend. WE ARE FEELING YOUR THOUGHTS AND PRAYERS! We have also been able to do quite a bit of research on what a diagnosis of spina bifida means. I have given up on searching all the medical websites until we have more information after seeing Dr. Moriarty (pediatric neurosurgeon) next Wednesday, March 24. We have found much comfort and encouragement from finding blogs of other families who have been "dealt our card." It is very humbling to know that others have gotten through this and most that we have read have surpassed what their doctors thought they could do. I was also given the name of a book written by a lady in Louisville who has a son with Spina Bifida. He saw all the same doctors we will be seeing, which is very wonderful. His diagnosis was very grim, but he has surpassed what they all thought, and is truly a MIRACLE. Her words are providing much comfort for us (mom and I both have a copy of the book). Although we won't know the extent of our little guy's case until he arrives, we are very hopeful with what information we have.

The nurse practitioner with Dr. Dunn's office (Cindy McGlothlen) was so kind to call me Friday evening. She had just gotten the report from Dr. Pietrantoni (my perinatologist, high risk OB). For reasons I now know, I have not yet gotten to see Dr. Dunn so far in my pregnancy. All but 2 times, and many times that I was seen while pregnant with Paisley, I have seen the nurse practitioner. For some this may be discouraging, but Cindy is such a wonderful woman and doctor, and I have fully trusted her expertise. Because we have been able to develop this relationship over many visits, she felt it necessary to call as soon as she heard the news and received the report from Dr. P. Her phone call could not have come at a better time. She was able to go over the report with me and give me some new information that I was desperately craving. What Dr. P had to say... the meningocoele (spina bifida defect that is NOT open and usually NOT containing nerve endings to be damaged) is "very small" and located at S1-S2 vertebrates (very low on the spine, below leg muscle weakness/damage). This is the rarest form of spina bifida, but not the most severe. Surgery with a meningocoele is usually not as urgent (possible not immediately like we were thinking) and not as complicated because the vertebrate and nerves are where they should be. This should be more like a cyst that just needs to be removed without all the nerves to repair. The most severe form of spina bifida is called a myelomeningocoele, if you want to do any research on the difference between the two. He also classified the hysdrocephalus as "mild-moderate." We want any word MILD we can have!!!! This again can also fluctuate so we are PRAYING that the fluid has decreased when I go back to see Dr. P in April.

Church yesterday was also a very comforting experience. We can feel the prayers, so KEEP THEM COMING FOR A LONG TIME!!! We are receiving many emails, cards, and letters as well, and they are very much appreciated. I have already started a binder/scrapbook of sorts to keep everything in. When he is old enough to understand, I cannot wait to share with him what a wonderful support of family and friends he had praying for him while he was still in his mommy's belly and quite some time after.

Keep the encouraging messages and thoughts coming...they are helping so much!
My email address... OR
Rodney's email address...
Our home address... 4955 Hwy 64 NW Depauw, IN 47115

We hope to decide on a name very soon, so you can have a NAME to pray for specifically. We are working on it!

I cannot say THANK YOU enough for your prayers. Several people have shared that they are "saying a prayer, and then another one, and a little while later, another one" KEEP PRAYING for all of us!!!

Please forward on to anyone you think may want to know...we want as many people as possible to know the correct information of our situation so they can PRAY!

~Meghan, Rodney, and Paisley~

Email to Family and Friends 3/9/10

I am writing this email with a very heavy heart after having an extremely rough and exhausting afternoon. Many of you know by this point that Rodney and I are expecting a baby boy this summer. We had a visit with a perinatologist (high risk pregnancy doctor, the same one I saw with Paisley due to high blood pressure) this afternoon after the ultrasound at my regular OB last week wasn't clear enough to get all the measurements they needed. After a very long ultrasound and talk with the doctor, the baby has been diagnosed with spina bifida. The defect is very low on the spine, which we are told is a very encouraging piece of information. They have also detected hydrocephalus (fluid on the brain) and a blockage, a complication from spina bifida, which we will learn more about when we see a pediatric neurosurgeon for a consult hopefully as soon as possible.

What this means...the baby will have a shunt put in the brain immediately after birth to drain the fluid into the body for it to absorb. This will be something he will have for the rest of his life. Apparently the shunt has been perfected over the years and should have minimal complications. We do not know, however, if this "blockage" in the brain is causing any kind of damage developmentally. We probably will not know this until he is born and can have the necessary tests/procedures done. Approximately 1-2 days after birth he will also have surgery to close and/or repair the defect on the spine. Again we will learn much more about both procedures after we see the pediatric neurosurgeon (the appointment cannot come soon enough, believe me!).

After leaving the appointment I called my momma and then Dr. Cynthia Nassim was my next phone call. She so graciously talked Rodney and I through what a diagnosis of spina bifida means for our family for nearly an hour after she was finished seeing patients for the evening. I thank God that I worked for her and have that relationship knowing that she will care for our little guy medically and also be there for us on a personal level. I am so thankful for this.

So please, just say a prayer, and then another one, and a little while later, another one. That is the only thing I know at this point that will help our little boy. There is nothing we can do to change this diagnosis and we are trying our best to handle it. I will keep you all updated as we learn new information on the diagnosis and what will be done to help him. We feel very blessed to have our sweet Paisley girl and are ready to welcome this new baby boy to our family.

Meghan, Rodney, and Paisley