Merry Christmas!

Repeat the sounding joy- the Lord has come! 

It's Christmas time and we are so joyful to be sharing this time with our sweet boys. Baby Kyle is taking it all in- and enjoying every moment of it. His two older brothers are counting down the hours until Christmas morning. We had an early Christmas with grandparents Mop and Pop, Uncle Brett and Aunt Jill, and cousins Addie and Annie this past weekend. We had so much fun! We will be spending this week with Brian's family and are especially thankful to have Aunt Kelly in town from Richmond, VA. We are having a very busy but very wonderful holiday! 

Kyle's latest MRI looked good. The cyst is now communicating with the other fluid filled spaces in his brain and we remain hopeful that he will not need a shunt or more neurosurgery. His next MRI is on February 10th.

His most current medical concern is a small mass that has formed on the back of his head, near his neck. He will be having a sonogram soon to determine if this is a enlarged lymph node or a type of cyst. We are praying that it is harmless swelling of an occipital node and that it will self resolve without the need for another (minor) surgical procedure. 

This Saturday, the 27th, he is finally having the dreaded 23 hour EEG. We believe these results will be negative for seizure activity but are not looking forward to another hospital stay. We are, however, looking forward to getting it done and over with!

Prayer Requests:

- A quick and uneventful 23 hour EEG

- That the mass on his scalp is harmless and will self resolve without surgery.

- An uneventful 8 weeks in between appointments and another good MRI scan in February.

As always, thank you for joining us along this journey. Baby Kyle is a very blessed baby boy and we are blessed to have him. 

Wishing you and yours peace, love and JOY this holiday season!! 

Thanksgiving

This time last year we had a lot to be thankful for. I was nearing the halfway mark in my pregnancy and we were just a few days away from our official 20 week anatomy scan. We had also just discovered that we were expecting another boy and had decided to name him Kyle. Life was good. 

Little did we know, our lives were about to change forever. In spite of a completely normal 20 week scan, we would discover a short 8 weeks later that our baby boy had significant brain damage. The corpus callosum, the largest bundle of fibers within the brain that connect the right and left hemispheres, was completely missing. He had extensive areas of cortical dysplasia- areas with abnormal brain folding. He also had a very large interhemispheric cyst growing in his brain causing mass effect on the surrounding tissue and had hydrocephalus as a result. No one knew what life would be like for our baby. 

If you had told us last year the journey we were about to embark on- that our baby would need two brain surgeries, 13 MRIs, 5 hospitalizations and 7 ER visits just within his first six months- we would imagine this Thanksgiving to be a somber one. But a little bit of perspective changes things. A little bit of hope changes things. And that smile? That smile changes EVERYTHING. 

We are blessed. 

Happy Thanksgiving! 

Counting it all Joy

Today, I took Kyle on his first grocery store outing since his surgery. It was beautiful outside and it felt so good to get back to our normal daily routine. I tucked Kyle's infant carrier in across the width of the cart and he was asleep just a few minutes into our shopping trip. 

I strolled the entire width of the store and eventually found my way to the produce department. A woman approached to congratulate me on my adorable baby. She was in the midst of telling me how quickly babies grow and what a blessing they are when Kyle shifted in his sleep, turning his head and exposing his week old surgical incision. She gasped and quickly shuffled away, murmuring something about my having a blessed day. 

My joy sunk into despair. Tears threatened to spill over, anger began to swell and I came uncomfortably close to being featured in a "meanwhile at Walmart" meme. I found my composure and headed towards a check out line. 

As I was loading my groceries into the van, feeling emotionally defeated and done, Kyle stirred again and flashed me one of his sweet, gummy grins. It was then that I realized that the day's blessing was mine to claim. I had not been robbed of joy by a stranger in Walmart. It was she that had been robbed by uncertainty. She would leave not knowing what a blessing he truly is and the miracle that is his being. She would leave not knowing the extent of God's faithfulness throughout his young life and how powerful one little toothless grin can truly be. 

Today, I rejoice in knowing.

Surgery #2

Kyle's second surgery went very well! They were able to accomplish everything they wanted and he did very well throughout the procedure and recovery. He spent two nights in the hospital and is now completing his recovery at home. We are very proud of our brave boy. He has been through more in his first six months than most of us will go through in our lifetime. And he did it all with a smile. 

For more pictures, click here:

http://flipagram.com/f/LSUxQirFWd

What's next? 

- First post op MRI/neurosurgery consult on November 18th

- Continued bi-weekly physical therapy

Happy Halloween

Here's our sweet little pumpkin! (Not everything has to be about brain cysts and hydrocephalus, right?!)

Surgery #2

"Operating on a child that looks this good is always a difficult decision to make".

We are big fans of Dr. Sandberg. He's been Kyle's surgeon since before he was born and has always been straightforward and honest with us. So when he told us that the decision to operate again was a difficult one but that the risk of waiting now outweighed the risk of a second operation, we knew it was time. It was a hard choice to make but we believe that it is the right one. 

Kyle's second surgery has been tentatively scheduled for early Friday afternoon. His MRI on Tuesday showed more cyst growth and enlarged ventricles (the fluid filled spaces in the brain). The goal of this surgery is to better connect the cyst(s) to the ventricular system of the brain and to coagulate parts of the choroid plexus- the part of the brain that produces spinal fluid- so that he doesn't produce as much fluid. The surgery is very similar to his first. It will be endoscopic and preformed through a small burr hole in the back of his skull. His recovery time in the hospital should be a brief one or two night PICU stay and we are hopeful his recovery will be swift and complete. 

Please pray for the following-

* That the surgery is successful and eliminates the need for a shunt.

* Kyle's medical team. Specifically rest and steady hands for his surgeon. 

* That Kyle's discomfort is minimal and that he recovers quickly and completely. 

* Zero post-op complications. Pray for zero infections and against a subdural effusion/hemorrhage. 

Thank you!!!!

17 Evening, morning and noon
    I cry out in distress,
    and he hears my voice.

Psalm 55:17

Miracle Baby

I usually dread seeing Kyle's neurologist. She hasn't always been very positive about Kyle's long term prognosis. She told us before he was born that he'd be at high risk for a multitude of issues, mainly epilepsy (possibly retractable- meaning not able to control with medication), cerebral palsy and developmental delays. She said it was possible that he'd have milestones that he'd never hit. That he could be severely intellectually disabled and unable to ever care for himself. He might not talk. He might not hear or see. 

Today was different. She said seeing him was the highlight of her day. That she'd never match his MRI scans to his current abilities. That he is a "miracle baby". 

We agree. "Kyle" in Yiddish means "victorious". We didn't know this when we chose his name but it's something we've clung to since first receiving his diagnosis at 28 weeks pregnant. Our baby boy would be victorious. His life mattered. No matter what. 

On Tuesday he will have a MRI and MRA. The MRA is to look for any recent ischemic events. Three weeks ago, I found Kyle in his swing looking like this...

Only half of his face seemed to be working. We took him to the ER and the asymmetry had already faded away. He was sent home. Today the neurologist noticed that his left leg is smaller than his right and he doesn't seem to be using his left side as effectively as his right. He can freely grab objects with his right hand, but has problems grasping things he wants in his left hand. It is VERY unlikely he had an event, but we are looking anyway. And she wants the 23 hour eeg to rule out seizure activity. 

Thankfully, we've managed to stay out of the ER since our last neurosurgery visit. We see the surgeon again on Tuesday and will be celebrating this feat. I feel like Kyle deserves a medal, but "miracle baby" will certainly do! 

What's next:

-MRI/MRA/Neurosurgery appt Oct 28

-23 hour EEG to be scheduled 

Happy October!

Baby Kyle is doing great! He's a happy little boy. He can roll both directions and sit using his hands for support. His physical therapist even said she thinks he is trying to shuffle forward when he is on his tummy! He will be six months old next week and we can hardly believe it. He is such a JOY. 

He LOVES the neurosurgeon's office. It's a good thing since we've been seeing so much of him lately! Last week was an eventful week. Kyle spent another night in the hospital for observation with vomiting. Thankfully, he improved and was able to come home. His MRI though showed an increase in both cyst and ventricle (fluid filled spaces in the brain) size but a decrease in the amount of fluid/blood surrounding the brain. 

A lofty goal! 

He had a follow up appointment with the surgeon yesterday and we discussed his surgical options, if surgery becomes necessary. Kyle's hydrocephalus is a little more complicated than the typical case and a shunt simply isn't a good option for him. So, our next step would be a second surgery similar to the first, where the surgeon will try to accomplish what he was unable to accomplish the first time by going in at a different angle and from a different position. 

Our hope is that Kyle won't need any surgery. If he does, we hope and pray the second surgery is a success and that it will eliminate his need for a shunt. His next MRI is in three weeks and we are hopeful that he will have a restful and uneventful break between appointments.

Thank you for your continued support and prayers. Kyle is a well loved little boy!

What's next-

-Neurology follow up Oct 22

-MRI and Neurosurgery follow up Oct 28

-Continued physical therapy bi-weekly

Hydrocephalus Walk

Go Team Kyle! We raised over $3,000 at our first annual hydrocephalus walk! It was held at the Houston Zoo and the kids had a blast. We came home with all kinds of goodies: Memorial Hermann water bottles, a brain shaped stress ball, hydrocephalus bandana and an awareness ribbon for our van. Most importantly, we were able to connect with other hydrocephalus families. 

Kyle is a little too young to appreciate the zoo but had a blast seeing his family and friends. Thanks so much to everyone who supported Team Kyle. We love y'all! 

What's next for Kyle? 

- Kyle continues to have biweekly physical therapy sessions through ECI.

- He has a MRI and neurosurgery follow up on October 7. 

- Follow up neurology appointment on October 23rd. 

Baby Pukes-a-lot

Another week, another ER visit. 

On Monday, Kyle was sleepy and pukey. So, we made another trip to visit our ER friends and had another MRI. The last MRI showed a return of Fred but also a decrease in the fluid/blood collection around his brain. This MRI showed a similar cyst size but also a second cyst growing beneath Fred. 

Kyle's surgeon is "concerned". We've learned over the past few months that the surgeon has three levels of concern. "I'm not worried" means, "yeah, there's something abnormal but I don't think we'll need to operate anytime in the near future or maybe even never". "I'm concerned" means, "Prepare yourself. We might need to operate soon". And "I'm worried" means.... well, we don't want to know what that means. 

So, he's "concerned". Darny darn darn DARN. 

On the bright side, he's "hopeful" that we can still avoid the OR. We're hopeful, too. It's nice to have a hopeful surgeon. We aren't complaining there. 

So the plan is to have a follow up MRI in four weeks to see if there is further cyst growth and go from there. I'm worried and I'll admit even a little scared. I don't want my baby to have a second brain surgery. I don't want him to have ANY surgery. 

Lately I've been asking the why question. Not the genetic logistics of how this happened but the spiritual "why did this happen???". And I've learned that "why" is a joy stealer. A theif. A common criminal. It takes joy and turns it to pain. And it takes the focus away from the questions we should be asking. 

Like "who". Who is my child? Kyle is a child of God. A child born into this world with a purpose and a plan. What is my child? He is a happy little boy who loves to smile, laugh and play. He smiles at everyone, even the tech that straps him onto the MRI table.... over and over again. He smiles at the nurse that starts his IV. And at the surgeon that decides if or when he will have to endure another operation. In the words of big brother Michael, he is a delight. 

And we are thankful. 

Great looks. Bright future. We believe it!

A MRI, Hospitalization, and Visit From Fred

We missed Kyle's weekly ER visit last week and couldn't stand being away from the medical center so long so we packed a bag and headed to the ER to say hi. We had such a good time catching up with our favorite MRI techs, residents and surgeon that we decided to get a room! Such fun! 

Not really. Kyle is vomiting. This is our third ER visit and second hospitalization this month. Not that you would ever see any emotional distress from Kyle. He laughed when he was strapped onto the MRI table and smiled when it was time for his "just in case" pre-op bath. He's been cooing and flirting with his nurse. He probably thinks the surgeon is his uncle and the MRI machine is a fun photo booth. 

I'm not doing as well. I'm tired. And worried. His MRI showed an increase in cyst size. Fred is back and wreaking havoc again. We were admitted last night and told it was possible he'd be back in the OR this morning. Thankfully, the vomiting improved overnight and it looks like we'll be going home this afternoon with a follow up neurosurgery appointment in one week. So, no surgery today. But maybe surgery next week. Or the week after that. Or the week after that.... sigh. 

We knew that life with Kyle would be an adventure. It's one we eagerly signed up for and would sign up for over and over again. He's such a joy and blessing. Just one snuggle from this sweet boy makes every moment spent in the ER, hospital, surgeon's office and OR waiting room absolutely worth it. We continue to put our hope and trust in Jesus and eagerly await the day our sweet boy can put the MRIs and surgeon visits behind him. God has big plans and a bright future in store for Kyle and we are so very proud of him. In the meantime, we continue to pray for peace, healing and rest. 

An Eventful Week

2 ER visits, 2 MRIs and one hospital stay. It's been a busy week. 

The fun started last Monday when Kyle woke up vomiting. A little bit of throw up isn't a big deal for most babies but it can very easily mean an ER visit for us. Once we hit the 3+ mark, Kyle was sent in to the ER by his neurosurgeon to be evaluated for increased intracranial pressure (read: another MRI). The MRI showed an increase in the fluid surrounding his brain and a "tiny" amount of blood but no signs of ICP. He was diagnosed with viral gastroenteritis and we went home. 

I spoke with the surgeon the following Monday about some concern over the bleed that showed on the MRI. He again assured me that it was inconsequential and everything was stable. Tuesday morning I left the baby to nap in his bouncer while I attended to the older boys upstairs. When I returned to check on him, I noticed he was not breathing and he did not immediately respond when I tried to arouse him. My screams finally startled him and he began breathing again. I put him in the car and headed back to the ER to be evaluated. They put in an IV and drew labs. Then we were sent for another MRI, which showed no increase in fluid but an increase in the amount of blood in the subdural space. Kyle now has bilateral subdural effusions that are mixed with blood -- but no ICP. (This was not the cause of his apnea spell but it means more frequent appointments and scans and increases the chance that he will need surgery to drain the fluid). All of his labs then came back clean and he was admitted overnight for observation. His neurologist came to visit the next afternoon and said that she believed he had a seizure. We are now awaiting a call to schedule a 23 hr EEG and are hoping and praying that this is not the case. In the meantime, we are keeping a close eye on him at home. He sees the surgeon again on Tuesday and has another MRI in four weeks. 

Kyle takes it all in stride and remains a very happy baby. We long await the day his MRI comes back clean and he doesn't have to spend so much time in doctors offices and in the hospital/ER. Until then, we are grateful for his medical team and that we live so close to the Medical Center. We really are blessed and believe that God has big plans for our sweet boy!

Three Months Old!

How time flies! 

Kyle had a two week check up with the surgeon yesterday. He did great! His head growth seems to be slowing and there were no signs of increased intracranial pressure. His next MRI/follow up is in one month. We are still praying that the fluid surrounding his brain is absorbed into his bloodstream and that the MRI doesn't show any cyst growth. 

Kyle is also doing well in physical therapy. He is visually tracking faces and is doing better with holding his head at midline and occasionally turning it to the left, instead of keeping it turned to the right- his favorite side! He is starting to develop a flat spot on that side of his head, so we are working extra hard at this! 

What's next:

EEG on July 25th

MRI on August 12th

Neurology follow up in mid August

A Good Week!

Kyle's opthalmology consult went great! His eyes are structurally perfect- all the nerves are fully developed and functional. We are so thankful!

Today Kyle had his second post-op MRI. It was moved up a week because of some concerns over head growth. The MRI looked the same as his last one, which is good. He showed no signs of increased intracranial pressure and doesn't go back for two more weeks. Yay!

His incision was cleaned today, too and is nearly fully healed! Thank you Jesus. 

Before and after!!

What's next?

- Neurosurgery follow up appointment on July 15 to check for signs of increasing intracranial pressure. No MRI. Yay!

- EEG on July 25

- Neurology follow up in early August

Prayer Requests and Upcoming Appointments

What's next for Kyle?
- Opthalmology consult on June 30th
- 2nd post-op MRI and neurosurgery appointment on July 8th
- EEG on July 25th
- Neurology follow up in early August

Please pray:
- that the extra fluid that now surrounds Kyle's brain is absorbed into his bloodstream and that he won't need an additional surgery to drain the fluid.
- that his eyes show no congenital deformalities
- that the fenestration surgery continues to be a success and that Kyle won't need a permanent shunt.
- that his EEG shows no abnormal brain activity.

Thank you!!

Surgery.

One Tuesday in late May, we took Kyle for his fourth MRI and neurosurgery appointment. We were hoping for another quick check with no signs of increased intracranial pressure and no cyst growth. Fred, the cyst, had other ideas. This is what we saw when the surgeon pulled up the MRI images...

The large white area is all Fred. The smaller white areas on either side of the cyst are Kyle's brain ventricles. The surgeon said it was time to intervene surgically and an endoscopic cyst fenestration and third ventriculostomy (ETV) was scheduled for that Friday. The surgeon warned us that the surgery might fail and another surgery would then have to be done to place a shunt that would drain the fluid from the cyst down a tube and into his abdomen. We prayed and felt very strongly that God wanted us to try the endoscopic surgery, which was a much better option for Kyle long term and would eliminate the risk of future surgery for shunt revisions, infections and malfunctions down the road.

The surgery took about 2 hours to complete and went perfectly for Kyle. He had no complications from anesthesia and was alert when we saw him in recovery. We were expecting a minimum of 3 nights in the hospital but he did so well that he was discharged 24 hours after surgery to recover at home! However, they were not able to connect the cyst as they wanted to the ventricular system but were able to successfully poke holes throughout the cyst wall and create an opening on the floor of the third ventricle to allow fluid to circulate easier throughout the brain. The surgeon did not believe that the surgery was going to be successful and advised us that he thought the cyst would look the same on the first post-op MRI. Instead, this is what Fred looked like post surgery....

Not only was the cyst considerably smaller, but his brain had expanded to fill in the extra space. In the words of our surgeon, it was "phenomenal"! The main issue now is that the fluid from the cyst has accumulated in the subdural space around Kyle's brain. We are hopeful that this fluid will be absorbed into his bloodstream and that he will not need another surgery to drain it!

Neurology Consult #1.

Kyle's first neurology consult came at about three weeks of age. He had a full neuro exam. His reflexes were normal and he had good muscle tone. There was some concern about his eyesight and it was noticed that his ears were slightly rotated back. There was also some concern over the movement on his right side and it was suggested that he might need physical therapy on that side. We left the appointment with an ophthalmology referral, an order for a EEG and a lab request for genetic testing.

About a week following the appointment, Kyle began to open his right hand and now uses it purposely when playing on his play mat. He receives physical therapy bi-weekly through ECI and is doing very well. His EEG is scheduled for late July and his ophthalmology consult is in late June. He is going to do great!

Fred.

Kyle had his first neurosurgery consult at one week old. We decided right away that the surgeon was our favorite doctor among his medical team. He was to the point but also compassionate and hopeful about Kyle's long term prognosis. We were told to expect many appointments at the surgery clinic and regular quick brain MRIs to monitor cyst size and to ensure there were no signs of raised intracranial pressure. He showed us how to check the soft spot for firmness and the skull sutures for separation and told us to call him right away with any symptoms of ICP, such as vomiting or excessive sleepiness.

One of the concerns early on in Kyle's prenatal diagnosis was the type of cyst he had. It was thought that he had a very rare type of cyst. When we expressed our concern to the surgeon, he said, "Let's just call it Fred.". It didn't matter and treatment was the same regardless. We've been referring to it as "Fred" since.

Birth Day.

It was decided by the doctors at the fetal center that we would deliver via c-section sometime between 38 and 39 weeks gestation. No one knew what condition the baby would be in at delivery and whether he would need immediate surgery to relieve the pressure on his brain. A medical team was formed and we were given a tour of the level 4 NICU, where our baby would be taken right after delivery and potentially stay for the first few weeks of life.

At 36 weeks, I noticed a decrease in fetal movements. It was a Friday afternoon and so we were sent to labor and delivery for evaluation. It was then discovered that I had developed pre-eclampsia and I was admitted for the weekend. Labor was induced that Monday, and due to the early delivery, we were able to try a trial of labor with the hopes of avoiding a c-section.

At 6:45 on Tuesday evening, our little boy was born. The room was full of people and medical equipment, none of which he needed. He scored a 7 on the apgar scale and then a 9 five minutes later. He was taken to the NICU under neuro watch and was assessed by the neurosurgeon, who saw no immediate need for surgery. He had an MRI the following day that confirmed the findings from the fetal MRI but confirmed that he did not have raised intracranial pressure . He was discharged home 48 hours after delivery with a follow up appointment scheduled the following week with the neurosurgeon.

We were so thankful! Not only did he not need immediate surgery, he also didn't have to endure a difficult delivery and his head size was within the normal range. We were elated to be bringing him home so soon.

Prenatal Diagnosis.

It was late August of last year when we received the news. We were preparing for the upcoming school year. Our six year old would be entering the first grade and his four year old little brother would be going into pre-k 4. We were done having children and I was sad about my youngest entering kindergarten the following year. Then we received unexpected news- I was newly pregnant! We were shocked but ecstatic!

The first six months were relatively uneventful. We found out at 17 weeks that we were expecting another boy and he had a completely normal fetal anatomy ultrasound. We were thrilled! Aside from a minor rise in maternal blood pressure, everything looked great when I went in for the 28 week growth scan. Everything seemed fine during the scan and the tech did not seem alarmed. She verified that I was seeing the doctor afterwards, printed out a picture for my husband and sent me back to the waiting area to wait on the doctor. I was completely unprepared for what happened next.

I was called back a few minutes later for what I thought would be a routine appointment. My blood pressure check had been normal and I was relieved that the pre-eclampsia that had complicated my first two pregnancies wasn't going to rear its ugly head anytime soon. Then the doctor came in and said simply and suddenly, "The fluid filled spaces in the baby's brain are enlarged. You need a better scan and high risk consult". He patted me on the back and said not to worry yet and that it might turn out to be nothing. That was a Monday and my appointment with the high risk doctor was scheduled for that Thursday.

The days crawled by and I googled "enlarged fetal brain ventricles" over and over again. I discovered that it was often a benign condition that self resolved prior to delivery and felt nervous but confident going into our appointment. Little did I know, the enlarged ventricles were the least of our problems.

My husband and I waited two hours to be seen by the maternal fetal medicine specialist. She came in halfway through the sonogram and gave us the news- there was a large fluid filled mass in our baby's brain and we were being referred to a fetal center at the Texas Medical Center for a fetal MRI and further evaluation. She was not comfortable managing our care and would not be seeing us again.

We were seen the following week at the fetal center by another MFM specialist and had another level two sonogram. This doctor was confident it was a simple arachnoid cyst in the space above the brain and the baby's prognosis was very good. The fetal MRI was to confirm these findings. Instead it painted a very different picture. The baby had a large interhemispheric cyst located in the right frontal lobe that extended towards the back of the brain that was causing mass effect on the surrounding tissue. Additionally, he had complete agenesis of the corpus callosum- the fibers that connect the right and left brain had failed to develop and were completely missing- and also an area of polymicrogyria on the right frontal lobe, meaning the grooves in that area of his brain had failed to develop properly. It was suggested that we might want to consider a late termination and we were devastated.

We would then go through weeks of repeat sonograms and consults. We saw a neurologist who told us that our child would be at high risk for a severe to profound intellectual disability, seizures and cerebral palsy. That there were milestones our child would possibly never hit and it was possible he'd never be able to care for himself. Then we saw a surgeon who told us that there was "a lot of room for hope" and that occasionally he saw kids with such abnormalities that were only slightly impaired or not impaired at all. We were told by the doctors at the fetal center that due to the rapid acceleration in fetal head size, I would need a cesarean delivery and that they were concerned about "maternal tissue damage". We dug our heels in and braced ourselves for a difficult delivery and lengthy NICU stay.

But mostly, we cried, prayed and leaned on our family for support. Our church family prayed and fasted with us. By the strength of Christ, we made it through those weeks with our faith and hope still intact.