One year later

In June 2013, Ian and I learned during our 20 week ultrasound that our son would be born with Spina Bifida, a birth defect of the spine that causes paralysis and affects many body functions. We were rushed to specialists in Roanoke and then later on to Philadelphia. We were scared, heartbroken and incredibly nervous on to what the future would hold. 

"For I know that plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29.11

One year ago --

We learned that we were having a son.
We learned that he was not what we expected.
We gave him a name.
We prayed.

One year ago --

We didn't know how blessed we were.

Our life has been changed forever since having Liam and we wouldn't have it any other way. Our new "normal" consists of  countless doctors appointments and therapy sessions. I can pack for trips to Duke in minutes and I'm pretty sure Ian could drive to Raleigh with his eyes closed if he had to. We have all gotten used to the trips of staying in hotels and hospital rooms. A year ago it all seemed like too much to handle but now it is the norm. 

Ian and I didn't know a year ago how much we would love being "Momma" and "Dada". Liam is all personality and makes us laugh every day till we have stomach aches. He has brought us so much joy and love that we feel we could burst at any moment. The "hard" days of dealing with Spina Bifida are few and far between. We wouldn't change a thing about Liam including his Spina Bifida. He is defined by his experiences and how he reacts to them. Everyone that has met Liam knows how much of a fighter he is. He has been working hard proving doctors wrong since the day he was born. Every piece of him (including his scars) is beauty.

So here's to Liam for making our dreams of being parents come true and for making every day wonderful!

P.S. On a sad note our beloved dog, Spence, passed away last week. He was our first "baby" and a wonderful big brother to Liam. He will be greatly missed.

To shunt or not to shunt....

The past few days have been a whirlwind to say the least. Liam had his Spina Bifida clinic last Thursday at Duke. He was scheduled to see all of his specialists and have some tests performed. When he met with his neurologists after his MRI we got bad news about his brain. Three of his four ventricles were larger than the previous MRI indicated and would need intervention to prevent damage to the brain.  Liam's brain is not able to fully absorb the cerebrospinal fluid, leading to excess fluid.  Without intervention, the excess fluid would cause increased pressure within his brain, possibly leading to permanent brain damage.  Luckily since he's still a baby, his head is still pliable and able to expand to accommodate the excess pressure.  He hadn't been showing any symptoms that are typically related to hydrocephalus (fluid on the brain) such as pain or vomiting.  However, we did find out last Monday when Liam met with his new PT that Liam is behind developmentally in almost all categories.  This delay is probably attributed to the excess fluid on his brain.  His is now scheduled for more intense therapy to help catch him up developmentally.  He'll also have his left leg casted to help straighten his foot to a more neutral position.  If the casting doesn't work, then he'll need surgery to stretch out his Achilles' tendon and get his foot back to neutral.  Right now his foot and ankle are so tight that he is starting to get a clubbed foot.  We'll going to try the casting first, but his orthopedist thinks that surgery will have a greater chance of success. 

Back to the brain:  We talked with Dr. Muh, our neurologist, in great detail about what needed to be done so permanent damage would not happen. Dr. Muh told us about a newer procedure (ETV, endoscopic third ventriculostomy) that many infants with myelomeningocile (his form of sb) and hydrocephalus have success with. We were hesitant because she said if it fails then he will need a shunt to be placed in anyways. Ian and I have dreaded the shunt since we found out he had SB in the womb. The shunt is the parents' and baby's worst nightmare since it malfunctions, moves, gets clogged, etc. and it requires lots of surgeries throughout his life. We decided on Thursday that we would just do the shunt and get it over with.

Flash forward to Tuesday morning at Duke and we are in the pre-op area. Dr. Muh tells us that she studied Liam's MRI all weekend and feels that he has a strong chance of high success rate with the ETV surgery and would we reconsider not placing the shunt in right now? We were both already a bundle of nerves and were shocked that she brought it up again. She gave us more info and told us that no matter what route we chose Liam is going to need surgeries as many SB kids and adults do and that shouldn't be our reason for not trying out the newer procedure. After talking and praying about it we changed our minds and off to surgery he went. Believe me, we both kissed that boy a thousand times and held on tight to him all morning. In typical Liam form he was in a wonderful mood even though he got up at 4:45 am and hadn't eaten any food since 7:30 the night before. And believe me he loves his food!

The surgery involved putting two small holes in a membrane in the third ventricle of his brain to allow an alternative route for the cerebrospinal fluid to drain and be re-absorbed. Yes, we allowed a doctor to put holes in our babies brain...we must be crazy! She tied his beautiful hair back so he didn't have to get his first haircut in the OR. Dr. Muh said that would just be horrible and I thanked her allowing me to give his first haircut. He was back in surgery for a little less than 2 hours. It was horrible waiting in the waiting room but Allison's parents came down with us and helped keep us company. Liam did great and she feels that this surgery will be successful. There is a chance of the holes closing back up since he is little and his brain is still developing but she is hopeful. Usually if a baby makes it to 6 months of not needing a shunt then the ETV works well. Time will tell.

Liam woke up from surgery and was groggy but overall in a good mood. This kid is a warrior! He got snuggle time with both Ian and myself and then Grammy and Granddaddy got to snuggle as well. We were left in recovery for over 5 hours since they didn't have a room for Liam once his procedure was complete. It was hard for him to sleep with all of the noise but he managed a few catnaps. He took to eating right away and never got sick. The nurses were shocked he didn't get sick because of all the anesthesia but I told them the kid doesn't miss a meal.

Last night was rough at the hospital. He was in a lot of pain and we kept trying to figure out what medicine would work the best. Poor Ian had to sleep on the floor as we only have one chair in the room. At least we have our own room. There was also a tornado warning this morning with sirens and all so that kept us alert and awake.

The resident doctor has already been by and said that as long as Liam continues to keep his food down he should be discharged at some point today. Dr. Muh will be coming by later with instructions and a follow-up appointment date next week. She did the surgery endoscopically so he has no scar, just three stiches on the top of his head. It is rather scary/amazing that they can do brain surgery on a 7 month old and then send him home the next day. We all can't wait to sleep in our own beds tonight.

Please pray that the ETV works and no shunt will be required. Please also pray for his pain to go away and for safe travels. Heavy storms are in our path all the way home today. Remember: God is Good!

Liam is 6 months old!

Liam is officially 6 months old. Time is flying by extremely fast. Everyone tells us if we blink for too long he will be grown and boy are they right. It has been a while since we last posted so we thought we would update everyone on how he is doing. We have had our first Christmas, Valentine's day and big snow since our last update.

Christmas Smiles

Liam's First Christmas

Liam is doing great and is gaining weight by the second it seems like. Our little boy was 3 lbs when he was born. Preemie clothes were too big and swallowed him up. That is not the case these days. The last time we weighed him he was 16lbs. He is still rather short for his age but is getting rather pudgy. He finally made the growth chart at 1% the last time he was at his pediatrician. We have a feeling that he is higher than that these days. 

He has recently started eating oatmeal cereal. He hated rice cereal so the doctors told us we could try oatmeal. So far so good. He is a very happy baby. He greets us every morning with a big smile on his face. Liam laughs, coos, and screams with delight all the day long. He will flirt with anyone that gives him any attention and is becoming quite the ham. He still only cries every now and then. Does this mean his teens are going to be horrible?!? Recently during one of our warmer days he went to the park with his big cousin Carter. He still loves bath time, walks and his dog, Spence. His new favorite thing is his baby jumper. 

Carter and Liam

We are in the process of getting Liam a new physical therapist. Hopefully we will get it squared away soon. He is meeting most of his marks developmentally but still needs to work on some others. We are hoping things will move in the right direction once his new therapist starts. He loves his babysitter and we feel very lucky to have Meme take care of him everyday while we are at work. 

We have been to Duke every month since we have been home from Philly. We will be making the drive in a couple of weeks for Liam to see the eye doctor. We will then go back in April for his spina bifida clinic with the four specialists. We will split that visit up and spend some of the time at Duke's Hospital for he is in need of more testing. Those days are extremely long but we all make it through and cough it up to being a normal part of our lives now. We will do whatever it takes for Liam to have everything that he needs.

Mommy and Liam at the last Duke appointment

The orthopedic doctors at Duke have mentioned to us a couple of times about Liam having surgery on his left foot when he is school age. His foot is just growing too much now for it to be done in the immediate future. His left foot has been misshaped since birth. The tendons in his ankle are so tight that it's affecting the development of his foot and lower leg. He will have surgery to loosen the ankle tendons. At the last visit they also told us that he no longer needs to wear his right AFO. He still has to wear his left one and will likely have to for the foreseeable future.

As far as neurology goes he still has not needed a brain shunt. The neurosurgeon says he has gotten more fluid on the brain but it is still relatively stable. She says that if we make it to the one year mark then we will probably be home free on not needing a brainshunt. His back scar from his closure surgery after he was born has healed very nicely and is not as red. It is still very noticeable but we are the only ones that actually see it on a daily basis.

The urology doctor is pleased with how Liam is doing so far at this stage in the game.  The developmental pediatrician and urologist wants to start a bowel management and urinary plan when he is two years old. The goal is by the time he is school age he will be able to be be self-sufficient so he won't rely on us for this bathroom needs and have the stress of incontinence during his school-age years. The goal is to make him self-sufficient for a successful life on his own.

Our little ham

We have placed Liam in God's hands from the very beginning. The good Lord has taken such good care of us and has given us peace and patience through all of our adventures. We are trusting Him through everything. Please continue to pray that Liam meets all of his developmental marks and does not require a brain shunt.