More Seizures

Coming off the heels of 2 ER visits in the last week and a half we headed into this weekend ready for anything but the med center. Friday afternoon greeted us with a short, 30 second seizure, 2 hours later another one, an hour and a half another one, and so on. In the mean time, we went through the protocol given by the doctors. After talking to the on call neurologist and neuro surgeon, we were told to increase his dosage of Keppra, his daily med. That didn't work, so by the time he seized on Saturday morning around 7am, it lasted 3 minutes and was much less subtle than the earlier episodes. Per the doctors' instructions, we gave Parker a dose of Diastat, which is similar to the meds used when we go to the ER. Fast forward to today and he hasn't seized since we gave him the Diastat. Leah spoke to our Neurologist today for N update and they informed us that His daily meds could take up to 2 weeks to take effect. We're glad to know that now, and glad to spend a weekend at home without meeting any new doctors (in person). As for us, Leah has presents wrapped and under the tree and she's slowly getting ready to go back to work. I am still getting my annual hunts/ fishing trips in while pushing through the year-end madness at work. Parker is the cutest kid in the world and it's time for him to go to bed. Good night

Made it Home

Leah and I are sitting on the couch with Parker sleeping on Leah's lap. Exhausted, yes, happy to be home as a family, absolutely! Being home is one thing, but walking in to a home that looks and smells like Christmas is even more relaxing. After dinner I'm running up to pick up the meds prescribed by our neurologist. The EEG didn't show any signs of seizures, so they prescribed Keppra, a medications typically prescribed for a broad range of seizure activity. Keppra will be a daily medication used 3 times a day and Diastat is his equivalent to an epi pen. If he has an extended seizure, we will use the rectal Diastat. Unfortunately they weren't able to pin point the cause or location of the seizures, but the good news is they have a definitive diagnosis of seizures since the activity stopped in the ER after administering Ativant (ER's version of Diastat that is administered via IV). Time to go change a diaper :)

More Parker Mason Brown Pictures



He's starting to smile!





EEG Testing today - 2 1/2 months





2 month shoot





1 month shoot



Parker Brown's 2nd EEG

Parker is undergoing an EEG right now to monitor his brain activity.  Right now the docs want to determine what type of seizures he is having and where they are happening.  Hopefully the meds that they gave him yesterday will wear off and they can catch one seizure while being monitored.  That should give the specific information they need to answer some of the questions in order to properly medicate. Leah and I are doing well.  We are getting to know the folks around here pretty well.

Parker Mason Brown Update

Leah, Parker and I are in the ER at Texas Children's. Unfortunately this is the second time this week for the nurses and doctors to enjoy our company. Monday afternoon we took Parker to the St. Luke's ER in the Woodlands where they performed a ct scan, x-rays, and blood work. After reviewing the results they transferred is to Texas Children's ER. After multiple tests and a true test of patience, we were admitted to the neurosurgery floor. After spending 15 hours in ER it was wonderful to have a room with a pullout bed and our own restroom. They tested for seizure activity on Tuesday night around midnight with an EEG. After the doctors collaborated on all results, they released Parker and told us their was no certain evidence of seizure activity or shunt failure/ infection, so it could just be a stomach virus that was causing the vomiting, lack of appetite, foaming at the mouth and unresponsiveness. Fast forward to this morning. I got a call from Leah as I was driving back from my annual hunt in El Campo, TX and she said Parker was having seizures. Leah's parents, Lisa and Danny, brought Leah and Parker to the ER where I met them. Parker was seizing every 30 minutes by the time he was admitted. The doctors immediately medicated with Ativan to stop the seizures around 2pm and he hasn't had one since. Based on the ct scan and X-rays the shunt hasn't failed, but conversely done a very good job of draining the fluid from the right ventricle. Based on the blood work, no signs of infection are apparent. Initially, the thought is Parker has formed epilepsy, which was highly anticipated by our neurologist. Once we are admitted to the neurology department, they will likely do another EEG and various other tests as well as determine what medication to administer. Hopefully we will have a positive update soon.

One Gazillion Prayers Answered

Leah and I are sitting in the NICU and Parker just finished an entire bottle while listening to Stevie Ray Vaughn's "Texas Flood". I think Parker likes the guitar since he took the bottle down in a record time.

Tuesday the doctors said we would start talking about going home in 7 - 10 days. We ensured them that we will do everything we can to get him home as soon as possible. The Doan's, who we had never met until Tuesday, had graciously offered to let us stay in their garage apartment in West U after hearing about Parker. That allowed us to be at the hospital for his morning and night bottle feeds to install consistency into his eating regiment.

Thursday, the doctors asked us if we would learn how to feed him through the feeding tube in order to go sooner. Leah and I finished all of our classes yesterday, Leah put his feeding tube in this morning which is the last test we have to do before he is cleared.

We talked to the doctors this morning and

PARKER IS COMING HOME TOMORROW!!!!!

We will bottle feed 3 times/ day and tube feed the other 5 until we see more progress. Parker also had his follow-up hearing screening yesterday afternoon since he failed his first one pre-surgery. His right ear passed and his left ear failed, so we will bring him in for detailed diagnostics on his left ear in a couple weeks.

Leah and I are elated! Thanks to everyone for all of the thoughts, prayers, notes, gifts, ect. God is surely listening and answering. I'll try to post some more pics when I get back on my computer and I hope to keep the updates coming as we find out more from the genetic testing, pediatric visits, diagnostic hearing tests, and whatever other doctors Parker gets to meet along the way.

Eye Test

Parker passed his vision test today! His eyes developed normally and no surgery will be required. The doc said we will know more about how well he will be able to see as he gets older. The eye doctor told us not to be pessimistic.

I also received a copy of the MRI and CT scans done pre and post op. I hope to take a look at those and post some of those images to help better explain what is going on in his head right now.

Moving Along

Parker is making the move from Level 3 down to the Level 2 ICU....one step closer to coming home. They want to keep him a while longer to monitor his progress and run a few more tests.

They are running genetics tests, vision tests and hearing tests. He weighs 6 pounds and 14 ounces now that the fluid has drained. He is wearing his first newborn shirt and it's huge!

He pooped on me while I was changing his diaper today, which was pretty funny. He's getting better with his bottle feeding and we hope to slowly ween him off of the feeding tube before we go home.

Leah is slowly walking more and we haven't used a wheelchair today! The hardest part is leaving the hospital without our boy. Unfortunately, he won't be able to watch the Aggies beat OSU with me at home this weekend, but I'm keeping him posted on the latest news and how the team is doing!

Thanks to all of you for the thoughts and prayers! We've come to realize that there are hundreds if not thousands of folks out there that we've never met that are supporting us! God is good.

PICTURES!!

I haven't been able to post pictures from my iPhone, so here are a few pictures through the first few days!

Parker's Status

Dr. Jay performed the surgery last night and we will catch up with him today. After the surgery he gave us a debreif. Parker's head was so large that his skin is now paper thin. That could cause issues with the sutures healing properly because fluid could leak from the incision area. Other than that, everything went flawlessly.

Now we hope to get a more accurate read on the diagnosis. We will speak to the neurologist today and continue to talk to the neonatologist. At this time, the neurology team isn't too optimistic about the future brain developent, but we're happy that he is doing well, breathing on his own and not showing signs of any other issues.

He is adorable and we can't wait to take him to the house and introduce him to a new, awesome world!

He's doing good.

Parker is out of surgery, everything went well. He's headed back to the NICU in a few!

In surgery

Parker just went into surgery. Should be out in 2 hours.

Finally

Leah met Parker this morning after a good night's rest. He has met a lot of people, but. Haven't seen him that comfortable and happy yet! To this point, this is the best day of my life! Parker has surgery tomorrow afternoon at 1:30. Keep him in your prayers.

Parker and Leah Update!

Leah went into the operating room last night around 5pm. Parker joined us at 6:18pm after couple epidural's and a tough procedure. Parker is doing great and breathing on his own. He weighs 8.7 pounds and measures in at 17 3/4 inches.

Leah is slowly recovering and Parker is getting an MRI right now. The doctors plan to perform the brain surgery on Monday. I'll keep you updated.

Heading to Labor & Delivery for a C-Section this afternoon!

Getting Close

Leah and I went to the doctor on Tuesday and things seem to be progressing quickly.  The fluid build-up continues at the same pace, and his body is measuring very small (about the 8th percentile).  All of his organs seem to be developing as planned, which is good news because the doctors could be performing the C-Section as early as tomorrow (Friday).  They are monitoring Leah for preeclampsia and we will get the results tomorrow morning when we head down to the med center.  Dr. Ivey told us to pack our bags and be prepared to stay for a while if they decide to do the procedure after our appointment.  If they don't take him this week, we will have a firm date by Tuesday of next week.  We have scheduled appointments at Baylor down town every Tuesday and Friday from now until Parker is born.

Leah is on bed rest now, which is a huge relief!  She feels much better now that she is rested and not near as swollen.  I hope to have another update on Friday if they don't do the procedure.

In the mean time, here are before and after pictures of the almost completed nursery (it's done now, but I haven't had time to go take new pictures).

Adapting

Leah and I are enjoying the last night of a long weekend full of relaxing, entertaining, cooking, decorating, packing, shopping, and yes.....College Football!!!  The house looks and smells like fall.  The bags are packed and ready to go to the hospital (whenever the time comes). Parker's room looks like something you'd see in a Magazine Ad.  The Family Room is finished and ready for Aggie Football watching and rocking Parker to sleep.

We had 4 appointments last month without much new news.  In our most recent appointment, all of Parker's vitals look good and they estimate he weighs 4 1/2 pounds.  His head is well over the 40 week mark and we are out of the percentile estimates now.  The fluid in the right side of his head continues to grow and push everything to the left.  There doesn't seem to be much brain matter in the right half, but some development could possibly be happening in the left side.  He is still breached and should stay head up for the remainder of the pregnancy.

Leah is READY!!!  We were joking about the term of pregnancy quite a bit this month.  Why is it that no one knows that pregnancy is really 10 months until they become pregnant?  My theory is if women knew that they had to do this for anymore than 9 months, they wouldn't do it.  Leah is officially 8 3/4 months tomorrow with only a month to go.  Parker's big head is pushed up against her ribs and I think he is sitting on her sciatic nerve.  This along with the record breaking heat makes for a painful combination.  Pretty much anything and iseverything she does  painful, and the heat makes for a lot of swelling.  Even though the little guy causes a lot of discomfort, it is fun to watch him move around when we talk to him.  Leah had a couple of great showers given by family, friends and co-workers which have distracted us from everything except for the excitement in preparation (and for Leah, decoration).

As for me, I try to help when I'm supposed to and stay out of the way when I'm supposed to.  The further along into this pregnancy we get, the more I admire, respect, and love my wife.  I spent some time the past 2 weeks preparing for my last trip, Pre-Parker (P.P.).  My company is putting me through a Personal Leadership program, so I'll be heading to Toronto on Wednesday for 2 nights.  Based on the tests I've taken, my top 2 strengths are Positivity and Adaptability.  Adaptability has really resonated with me over the last couple of weeks.  Not my adaptability, but what it means to women, a young family and a new baby.  To think that I was living with Rob, and Leah was living with Lara as little as 14 months ago is mind boggling.  We've adapted to all of the changes presented to a young, married couple, and we've done so very well.  Now we prepare for the changes that are presented to a young family and it seems natural.  Leah and I adapt naturally because we are changing with someone we love.  This gives me a ton of hope when I think about Parker.  I know we are in for a big change, a new boss is about to take over the house and I know we both love him......that makes for a great combination!

Possibilities

I can't believe a month has passed since the last post.  Time flies when you stay extremely BUSY!  Leah and I spent the 4th in San Antonio on Canyon Lake with The Robinson and a few other old friends.  On the way to the lake we had a wonderful, relaxing evening with the Schuerg's on the San Marcos river.  I took off to Port A for a 2 day, offshore fishing trip with a few buddies.  I had a 5 day, mid-year sales conference in Arizona.  Leah's dad was in from Saudi and we were able to have dinner with the family.  We went to Austin for a night with the Collier's (expecting 5 days beofre us), then to Waco for the Brown Cousin's Reunion.  Thanks to everyone in our great support system of friends, family, and co-workers, we are appreciative of all of you!  I especially have to thank Leah's Mom for pinch hitting at one appointment so I could fish, and of course Leah for letting me go.

We are in the 28th week and we've had 7 appointments so far this month.  It's exhausting for me, I can only imagine what Leah's body is going through with the physical changes, work, and all of the doctors visits.  We've met our Neurologist, Neonatologist, and Fetal Coordinator this month.  We toured all of the facilities in the Medical Center including the birthing and delivery center, the level 3 NICU, and the Ronald McDonald house.  Most of the appointments were fairly routine, Parker is growing as planned and he is cuter than ever.  I keep catching Leah saying, "he is so cute, I can't wait 'till he's out here so I can give him a bunch of kisses." 

Leah and I were especially excited about meeting our Neurologist last week.  Dr. Gary Clark is the gentleman that would give us more clarity about life after birth and more of the possibilities down the road.  We weren't expecting him to give us a potentially different diagnosis on the cause of Parker's Hydrocephalus.  The right ventricle is accumulating more fluid than the left (you can see it in the picture on the side bar).  Dr. Clark detailed review of the MRI revealed a dark spot in the right side of the brain that could be a cyst.  A cyst could protrude into the aqueduct restricting the flow of fluid from the right ventricle more so than the left. In this instance, a cyst in the brain is good news.  The diagnosis of a cyst over acqueductal stenosis would rule out the possibility of genetic issues.  A cyst requires 2 shunts but the long term prognosis is better.  We know this is only a possibility, but it's comforting ending our specialist appointments on an optimistic note.  Dr. Clark was impressed with our optimism and said our attitude will go a long way in dealing with any issues that arise.

Recapping the last month reminds me that Leah and I are extremely blessed to have the opportunity to do the things that we do and know the people that we know.  The optimistic diagnosis from Dr. Clark and one particular keynote I heard in Phoenix remind me that the potential for us individually, our families and our careers are truly uncapped.

Leah and I continue to remain positive and hopeful that when we do the right things, have the right attitude, and most importantly remain faithful that God is working His plan, we will continue to unveil tremendous opportunities throughout our lives as well as provide a wonderful home for Parker with endless possibilities and opportunity for our son!

I'll post a few photos later since we don't have any appointments this week!!!!!

P.S.  There is a really cool Poem that was written by an acclaimed warrior, musician, poet, and not to mention a King.  It was published in the number one selling book of all time (appx. 6 billion copies sold) and my Grandmother named me after this guy.  His name is David and the poem is located in Psalm 139 v. 13-18.  Check it out if you're up for a short read. 

Right People in the Right Places

I think I'm officially responsible now that I'm 30! Some people greive and mourn with age, but I was sick of my 20s. Yes there were some amzing things that happened in my 20's most notably, I met my beautiful Bride, Leah.  Now I'm excited about starting the family that I've always dreamed of, building the legacy that any Dad wants to put in place, and meet as many wonderful people as I can along the way.

Leah and I both turned 30 this month and it's been an awesome month of celebration! We topped it off with a fabulous weekend on lake conroe with great music, relaxing on the boat, wonderful food, and most importantly great people.

The right people are always in the right place at the right time. Most of you may not know what impact you have, but it is evident to us that every little thing happens for a reason. This ranges from little conversations that are perfectly timed, to meeting new people that have a ton of information, to normal daily conversations where people have the perfect thing to say, to gestures that are so enormous in thought and magnitude that I'm blown away. All it boils down to is we are much more cognizant of how this puzzle is coming together and who is putting everything in place.  Before the update, we both thank all of you for the support and prayers!

Updates:
Monday was tough for both of us as we dove into the MRI findings, but to stick with the theme, we were with the right folks. Dr. Francis, our general OB in the Woodlands had a very difficult, but perfectly delivered conversation with us about planning. Planning beyond what we imagined.....planning for decisions that we may have to make in difficult situations. It is important to plan before emotions are at a peak, doctors are scrambling around, Leah undergoes surgery, and I watch doctors perform surgery on my wife and son. Based on how the doctors have described the injury to the brain, all ranges of possibility are fully in play. This means that we have to decide how we will handle each scenario. In most pregnancies it isn't much fun trying to imagine......what if we have to have a c-section? what if our doctor isn't delivering the baby? what if I go into labor early?  what if.....

Our conversations are more along the lines of, what are your thoughts on life support? what type of brain surgery should we chose?  should we get Parker circumsized? (ok, we've got that one figured out but you get my drift).  The planning conversation is so important and I wish you could have seen the compassion and sincerity that Dr. Francis has for Leah! We are definitely with the right doctor and she handled the conversation and situation wonderfully. The icing on the cake was having Leah's friend Michele with us. Her support was yet another instance of the right person in the right place at the right time to help us both reflect on what we're experiencing.

Tuesday Leah and I headed down to the Medical Center to meet Dr. Ivey who will be taking over care at 36 weeks and performing the c-section.  He is wonderful!  Dr. Ivey was very comforting, let us know we are working with the best people and gave us comfort in knowing that we can call him or his team at any hour of the day with questions, concerns, curiosities, ect.  He gave us a good idea of what timeline to expect and if everything stays on track (which all of you that have had kids know this is a coin toss) we will be having a c-section around Oct. 5th.

I knew that we'd be in for a roller coaster of emotion, but I wasn't expecting a free fall to start the week. That's the excitement of the ride, you never know what to expect. We had a great evening on Monday hanging out on the couch talking to the rambunctious little kiddo in Leah's belly.  I got to clean the kitchen and do laundary last night, and I'm about to go hangout with Leah when I get done with this tonight.

My thought of the evening is this, some people are praying for a miracle that God will give us a flawless, perfectly healthy baby. That would be awesome, but there are a range of miracles that God may have in store for us that may not encompass the traditional picture of health.

No appointments this week!

We get a break from doctors this week so we thought we would share some photos.

Excited Parents!

The title of this first post could have been anything from scared, to nervous, to trusting, to excited.... the list goes on but excited is the first thing that pops into my head when I think about the life that Leah and I are bringing into this world.

Naturally, we will undergo the full spectrum of emotions throughout the pregnancy, as will any expectant parent.  We are preparing for a range of possibilities that are extremely broad and we are faithful that God will work his master plan.  Whatever that plan may be, he will prepare us.
For those of you that we haven't had a chance to talk to, my beautiful bride and I are expecting our first child on October 11th 2011. Parker Mason Brown is the new beginning to our unbelievable family of 3! Last week (week 22 in our pregnancy) Parker was officially diagnosed with a birth defect called Hydrocephalus, this is an excessive build up of fluid in the brain. The root cause is called aqueductal stenosis, a blockage or absense of the path where fluid naturally flows from one part of the brain to the next.

What does this mean? Fluid is building up in Parker's head that would normally circulate through the body and be absorbed. The fluid is competing for space where his brain is trying to form. Yes, this means brain damage is a distinct possibility. Based on the MRI and conversation today, it looks as if all facets of the brain are forming, but the fluid is cramming the brain matter to the edges of the skull. The pediatric neurosurgeon we met at Texas Children's said that it looks like the center of the brain is showing early signs of damage, this is the part of the brain that controls your vision.

Good News, Leah and I are doing extremely well! First and foremost, this news means God has blessed Leah and I with the ability to have a family of our own and we are both thrilled! Secondly, it means we will have to deal with some challenges throughout the pregnancy and throughout Parker's life that may not be normal to most parents and children, but it will be absolutely normal for us.  God will not give us anything that we can't handle and we are in a great position to handle any scenorio that comes our way.

Family and friends are extreme important in our lives and we want to keep everyone informed, educated and comfortable with everything that is and will take place.  We've decided this blog is the best way to do that.
Here are a few of the key things that you may want to know:

This is considered a high risk pregnancy, so Leah will have a c-section.
The day to day managment of the pregnancy will be normal.
The pregnancy is expected to be full term.
Parker will have brain surgery after birth to release the fluid from his head and this will be an attempt to correct the issue that causes the build-up and damage in the brain.  We won't know the extent of the damage until he begins to form his cognitive and motor skills.
60% of children with shunts inserted into their brain will need a subsequent procedure by age 2.
Leah and I are in great hands. We have a team of 5 doctors that are monitoring Mom and baby closely.
Leah will be delivering at St. Lukes in the Medical Center
Parker will then be transferred to Texas Children's for the brain surgery immediately thereafter.
I love my wife and she is awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We love all of you and we apologize that we cannot inform everyone individually, but we would love to hear from all of you.  Our goal is to keep everyone informed, interested and praying!  We can't wait to see our little boy, and we can't wait to introduce him to all of you!!!!

Love Leah and Dave

P.S.  I will be posting pictures soon, so stay tuned.