4 months old!

When I look back at these past 4 months, I'm in amazement.  I can't believe how much has happened and how far Josh has come.  We constantly think back to those days when we were walking to the hospital every morning from the Ronald McDonald House.  It seemed like we were never going to take Joshua home.  Now I sit on my couch and type in the comfort of my own home...with my husband reading beside me, my baby playing, and my dog and cat being their ridiculous selves!  I love it.  We're a family.

Life continues to operate pretty much low-key.  Up to this point we've been having check-ups every 3 weeks.  Our neurosurgeon is reallly happy about Josh's progress and now feels comfortable to see us every 3 months. 

We had a bit of a concern on Labor Day.  We had been noticing that Josh's apnea monitor had been going off quite a bit for low heart rate over the past few nights.  It also seemed to be becoming more frequent as each day passed.  We called Children's Hospital and they decided that without seeing him, they couldn't give an accurate diagnosis.  So we went in for 2 nights while they monitored him.  After comparing his data with that from his sleep study, they decided that it was just a matter of him getting older.  Therefore they dropped the threshold to 70, rather than 80 which is where it was.  We are praying that after his next sleep study he will no longer need the monitor. More often than not the monitor will alarm at 2 am because Joshua scratched his chest and the leads came loose.  We're exhausted and deaf (I can't even explain how loud it is!). 

I've been meeting with his PT and OT with Early Intervention.  It's been really fun learning different activities that help build muscle strength and balance. 

We keep praying for his legs and feet.  Matt and I watch every movement with eagle eyes.  Every now and again he has new movement in his lower extremeties.  Those moments are so exciting!!  There are still great things ahead. 

Sometimes there are tough moments when our hearts just ache.  However, we just remind ourselves that there is so much to be joyful and thankful for.  He's babbling and cooing like crazy.  He just picked up his toy for the first time the other day!  When we look at him, he's not just a kid with spina bifida. He's Josh.  Amazing, perfect, sweet little Josh. 

Normal Life

Being at home is nothing short of WONDERFUL! Nevermind how great it is to sleep in our own beds.  It's so fun to actually feel like parents.  Josh is such a good baby.  He's sleeping through the night which is GREAT! 

He had an appointment with neurosurgery 2 weeks after we got home which was really positive.  The doctor was pleased with his progress.  The wound on his back was looking really good.  We were still using gauze to cover it but rather than being the size of a quarter, it was the size of a dime.   Josh had another follow-up 3 weeks after that appointment.  They did a head ultrasound to measure his ventricles again.  We keep praying for good news and we have been blessed!  His ventricles are still in the normal range!  His next appointment is next week.

Josh saw urology recently also.  The doctor did a Urodynamics study on his bladder.  The test entails filling his bladder with dye because they wanted to see if urine refluxes into his kidneys.  The results were also great news!  His bladder is able to hold urine which is the best case scenario. 

The following week Josh had his first spina bifida clinic.  He met with a rehab specialist and orthopedics.  After having a hip ultrasound and an xray of his spine completed, we met with the orthopedic doctor.  He confirmed again that both of Joshua's hips are out of socket.  Josh also has slight scholiosis which is not at all uncommon for people with spina bifida.  He continues to wear the splints on his feet to loosen and stretch his muscles and tendons.  At this time the doctor doesn't recommend that we put Joshua's hips back in socket because he doesn't show both abductor and adductor movement in his legs.  The balance between both is what keeps his hips in socket.  Essentially his hips would come back out of socket.

Josh and I met with the coordinator from Early Intervention a couple of weeks ago. Early Intervention is a free therapy that comes into the home to teach Matt and I different stretches, positions, etc.  Since he has limited mobility in his legs, building a strong upper body is crucial.  As of right now he will be seeing a physical therapist once every other week and an occupational therapist once a month. 

Lastly, we signed up to be a part of "Walk-N-Roll" at the Montgomery Zoo on September 24th, 2011.  Walk-N-Roll is an event that benefits the Spina Bifida Association.  The Spina Bifida Association is an organization that promotes awareness, research, and is an advocate for people living with spina bifida.  As someone who knew nothing about spina bifida, I truly believe in this organization.  Most people that we have encountered have heard of spina bifida but don't know what it is.  If you would like to join our team and help us raise money or simply sponsor either Matt or I, we would greatly appreciate it!  Of course, you are also welcome to walk with us at the zoo too!  Use the link below and follow the directions to donate online.

http://www.sbaofal.org/

1. Click on the "Walk-N-Roll" icon
2. Click on "Sponsor Walker or Roller" or "Register Here."
3. If you are sponsoring just type in one of our names.  If you are joining our team to help us raise money, you will need to follow the prompts to join "Team Josh."


When we first found out about Joshua's spina bifida, we were heartbroken.  However, we can now say that God has brought more blessing in our lives through this than anything else.  Thank-you everyone for how you've supported us.  This experience would not be the same without all of you!

Home



I realized he was smiling after I took the picture!  He loves his great-grandma!







Oh how I have longed to write this...it's time to go home.  On Monday we were moved into a room with Josh.  This is our preparation for going home.  We have been taking care of him ourselves.  The nurses are available if we need them.  We are happy for this time to transition. 

Joshua had a sleep study on Sunday night.  It was a follow-up from his study four weeks ago.  They said that he had improvement from his last study but he still had periods of apnea.  Therefore, they are sending him home on a monitor.  He'll have to wear it while he's sleeping.  A loud alarm will go off anytime he stops breathing for a certain period of time. 



His new splint!





 

Also, he has a splint that he will be wearing at different intervals throughout the day.  Since his right foot is slightly deformed, the splint will be used to loosen the muscles and help reposition his foot. 



We must say, we will miss the people here.  It was bittersweet leaving the NICU to go to our room.  It means progress and finally being together as a family.  With that being said, we will miss our new friends.  Joshua has gotten wonderful care and the staff is absolutely amazing.  It has been hard to leave Joshua every night and periodically throughout the day but knowing he was getting exceptional care helped us sleep at night. 





We're excited to be going home tomorrow.  It seems surreal.  After being here for 48 days, it's time.  Today was our first full day with him.  We spend a majority of it holding him and playing with him.  We're making up for lost time!  We'll be coming back next week for a follow-up appointment in which they will do another ultrasound to check his ventricles.  Joshua will continue to have peiodic appointments throughout this upcoming year.  Please continue to check our blog.  Joshua's story is not done yet!

--Kim, Matt, and Josh (finally!!!)









This wasn't a small victory, it was huge!

Stress is what started this day.  We were already stressed thinking about the upcoming ultrasound.  The nurses had stopped feeding Josh at 4am in case he had to go to the operating room for a shunt.  When we walked into the NICU, we could hear him crying from the door.  He was miserable.  To further complicate his misery, the central line, which is what they implanted in his chest to substitute for an IV line, came loose during the course of the night.  They noticed that his entire blanket was wet after his IV fluids (for the possible surgery) were started.  His chest looked swollen and sore.  The surgeon from the operating room had to come up to pull the line.  However, he needed to have an x-ray to make sure it was really out of place.  After the x-ray, the surgeon pulled the line.  Then finally the ultrasound technician came up to do the ultrasound.  The little guy hadn’t eaten for seven hours, was given a bedside x-ray, and had a tube pulled out of his chest.  Keeping him still for the ultrasound seemed like it would be harder than it actually was.  After the ultrasound tech finally left, it was a waiting game.

About an hour later, Matt and I were changing Joshua’s diaper when I looked up and our nurse was on the phone.  She came over to us with a smile on her face and tears in her eyes. She heard from neurosurgery and they told her that the ultrasound showed that his ventricles were normal and that they were going to begin transitioning us to go home.  We were overjoyed and can’t believe we’ll be going home shortly.  On Sunday they will do a sleep study on Joshua since his last sleep study showed that had some apnea.  On Monday he will do another ultrasound to make sure everything is okay before letting us leave.  We will spend the night with him in a room at the hospital and probably end up leaving on Tuesday or Wednesday.  We’ll be going back to the doctor every Monday so that they can do an ultrasound to check his ventricles.  There are many reasons that we don’t want Joshua to have a shunt but here are the cold hard facts: 80 – 90% of kids with spina bifida get a shunt.  After getting a shunt, it usually will fail or become infected within the first 6 months.  On average, they need to be modified 2 to 3 times before a child is 18 years old.  Typically if a child needs a shunt, it will show in the first 7 days.  After that it’s most likely to occur within the first month.  If you make it out of the first month, the chances reduce drastically again.  If you make it out of the first year, the chances are much smaller yet. 

Today was a huge victory!  I can’t believe our time has finally come.  We felt like we were perpetually “2 weeks away” but finally the end is in sight.  It felt hopeless towards the middle of the process.  I think back to when the CSF was leaking out of his incision 11 days after the initial closure.  The doctor felt at that point that he needed to put the shunt in, but in the operating room the CSF was slightly cloudy so he wanted to send it to the lab to make sure it wasn’t infected. That’s when the neurosurgeon put the first catheter in his head.  A few days later, they figured out that the two ventricles weren’t communicating so they added an additional drain.  All of these things prevented the shunt from going in right away.  We know that God is and has been doing something spectacular.  We needed to persevere.  It’s not to say that Joshua won’t need a shunt, but we have high hopes. 

Big day!

We rush around every morning hoping to get to the hospital as soon as the NICU opens.  Of course when we're there on time, Josh's neurosurgeon doesn't come until 11am.  When we're 15 minutes late, he has already stopped by!  We waited for a while for the ultrasound tech to get there and do the ultrasound on Joshua's head.  As soon as she finished, she brought the results to neurosurgery.  As you can imagine, we were on pins and needles waiting to hear what his doctor had to say!  He finally got there at about noon and said that everything looked great!  It brings tears to my eyes as I recall his words.  Joshua's ventricles were slightly enlarged but still looked normal!  They are going to check them again early on Friday morning.  The great news is that if they still look the same size, they will probably send us home this weekend!

On Thursday, we will have been here for 6 weeks.  It seems like a lifetime ago since I delivered.  Never would I have guessed that we would still be here.  We can hardly wait for Joshua to hear the sounds of a car, see the room we've created for him, and many other things.  We are thrilled with the idea that we could be going home soon.  It's been a long journey but we're almost there! 

More changes

Two days ago when I was holding Joshua, I felt a drip on my hand.  Matt at the same time noticed that his dressing on his head was wet.  The nurse paged neurosurgery to come and take a look.  The nurse practitioner from neurosurgery came up.  She took the dressing off of his head.  She poked and prodded around the area where the catheter comes out and wasn’t able to find anything dripping.  Her opinion was that it was fine.  Matt and I left shortly after that because the NICU was closing.  When we got back to the Ronald McDonald House, Joshua’s nurse called to tell us that they had noticed that no fluid was dripping from the catheter into the drain.  Therefore they took him down for a CT scan.  When neurosurgery looked at the CT scan they found that the just the tip of the catheter was still in his ventricle, but it had pulled out 2 centimeters.  They just wanted to watch for any other changes. 

The next two shifts only collected 5 mL and 7 mL.  In one shift they usually collect 20 mL.  When Joshua’s neurosurgeon came the next day, he told us that he wanted to take the catheter out.  He didn’t feel like it was doing anything for him anymore and his white blood count had spiked for the second time in 3 days.  At this point, the catheter had more risk than reward.  Another doctor pulled the catheter and stitched up the opening.  This is a little sooner than our doctor originally had wanted unfortunately.  During these next 24 – 48 hours we’re going to be watching to see if CSF is leaking from either his incision on his back or from the area on his head that was stitched. 

We need some extra prayer while we wait and see what happens.  We’re continuing to be positive and hopeful!

One month old!

Not much has changed this past week, which is great!  Since Joshua’s surgery, the doctor has been monitoring his back for any changes.  We’re hoping that the wound continues to slowly fill in.  The doctor is taking it one day at a time, which means that we still don’t know when we’ll be going home.  He wants to be very conservative which we are in favor of also.

It’s been fun to see Joshua growing.  It’s so crazy to watch how much he is changing.  Since he has been on his stomach for 5 weeks now, he has got so much neck control.  He definitely favors laying on his right side.  Anytime we move it to the left, he almost immediately moves it back on the right side again.

Fortunately we were able to go home last weekend for a military formal and Matt’s graduation.  He will not have to worry about school for a while, at least until it starts again in July!  Let’s hope that we’re not still here!

You know what they say....third time's a charm!

Thankfully, surgery went well.  This was his fifth surgery but third closure for his back. Joshua was supposed to go down to the operating room at 10:00am but they didn’t get him down until about 11:30am.  The time difference isn’t huge unless you’re dealing with a baby who’s hungry!  He’s allowed to eat until four hours before surgery.  Therefore his last feed was at 6:00am.  He’s eating like a piggy these days…about 4 ounces at every feed.  Usually he’ll tolerate not eating for about five hours (It’s sad that he’s had so many surgeries that we can tell you how he typically tolerates not eating before surgery!).  After five hours IT’S ON!  He’s hungry and he’s not afraid to tell us.  It’s probably the hardest part about this entire situation.  We can’t hold him and comfort him, which is naturally the thing that you want to do the most when you have a baby.  When we’re able to hold him, it’s on several pillows while he lies on his tummy.  We still love it but you and I both know it’s not the same. So when he’s crying and wants to eat and there’s nothing we can do to console him, it makes my heart ache.  Fortunately he likes his little car ride in the cart down to the operating room.  He usually will quiet down during the trip. 

The doctor came to let us know that everything went well during the surgery.  Rather than stitching up the area that was leaking, he stitched both the top and the bottom.  In the opening in the middle, he left it open wanting it to granulate in.  Basically skin and tissue will fill in as the wound heals.  He expects the entire healing process to last about two to three weeks.  It’s possible that we could be going home before then.  We would just leave with a treatment plan.  We’re not ruling anything out at this point though!   The doctor reminded us again today that we’re used to living our lives in hours and minutes but the human body heals in days and weeks.  I’m just so thankful that babies are so resilient!  

Thank-you to everyone for loving us through this.  God has used all of you to bless us in a way that we have needed more than we can explain.

Good news, bad news

On Memorial Day, we noticed fluid leaking from Joshua’s back.  The good news is that it didn’t look like CSF.  However, anything leaking is bad news.  The day after his surgery for the second closure I asked the neurosurgeon about this area that was in the middle of the incision that looked white.  The last time Josh had something leaking from his back, it started with a white area that slowly broke down and CSF leaked out.  The doctor said that we needed to watch that area to make sure nothing came of it but as I’ve told you, something started leaking out.  It looked like pus of some sort.  The nurse paged neurosurgery and they told us to stop his feeds at 4am in case they felt that he needed to go to surgery to do another closure.  We got to the NICU early on Tuesday morning hoping that we wouldn’t miss the doctor doing his rounds.  He hadn’t been by yet so we waited and waited.  It turned out that he was in surgery and wasn’t able to do rounds in the morning.  Of course he came in the afternoon while we were gone.  He said that he wanted to continue to watch it but would talk to us in the morning.  Again we got to the NICU right away this morning.  We got there just before the neurosurgeon did his rounds.  He looked at it again and decided that he needed to put some extra stitches in the incision because the stitches that are there are starting to stretch and open.  Therefore, tomorrow Joshua is scheduled to go down for surgery again.  Rather than opening the entire incision or cutting any of the current stitches, he will just put additional stitches in the area that is starting to stretch.  After that they will continue to put gauze on the incision in hopes to remove any dead cells.  When the surgery is finished, the neurosurgeon said that he wanted to watch it for about 10 days or so. 

Continue to pray for us.  It’s difficult not to get discouraged while we’re constantly thinking we’re 2 weeks away from going home. 

Another surgery done

It wasn’t long after we were informed about the possibility of surgery that it was actually scheduled (Friday).  Again, unfortunately the internet is very patchy so we’ve not been able to update.  Our neurosurgeon handed us off to a colleague of his who specializes in spina bifida.  Joshua’s new neurosurgeon has performed this type of re-closure many times and was happy to take Josh on his caseload.  Therefore on Friday Joshua went in for surgery for the second time on his back.  They had the plastic surgeon on standby but weren’t sure if they were going to need him.  The skin where the CSF was leaking is very thin.  The doctors compare it to tissue paper.  To help prevent the CSF from leaking they reopened the entire incision and pulled tissue and fascia from the sacrum and the lower back.  The new tissue covered the area where the CSF was leaking.  I asked the doctor if he thought that this “was it.”  He responded by telling me that this was going to get fixed before we leave here and that we didn’t need to worry about whether or not it was going to get taken care of.  It could take just this surgery or it could be multiple surgeries.  Regardless, it’s going to get taken care of.  I don’t think I ever questioned whether or not it would still be leaking when we left.  However it keeps as a reminder to me that as long as we leave here healthy and healed, that is what’s important. 

Today they pulled the dressing off of his incision.  The incision is much prettier than the one before, if that’s possible.  The other incision was raised and made him look like a football.  This incision is flat.  The neurosurgeon looks at it everyday to monitor progress and is extremely happy with how it looks. 

They are continually monitoring how much CSF is leaking from his head catheters.  On Thursday, the nurse flushed out his right catheter.  When she did that, the fluid that she flushed drained out the left catheter.  Now remember, originally they only put one catheter in because the left and right ventricles are connected and the fluid should freely move between both.  Therefore usually there is no need for two catheters.  It’s awesome that his brain is now communicating!  There was a little CSF leaking from one of the catheters this morning so the nurse paged neurosurgery to come and take a look at them.  The neurosurgeon didn’t get there until after we left (NICU closes between 2pm - 4pm).  When we returned, they had taken the right catheter out! Yay!  He still has one catheter, but the fact that he doesn’t need both anymore is a huge victory!  Next the neurosurgeon wants to begin challenging the left catheter by shutting off the valve to see if Joshua truly needs a shunt or not.  If his ventricles begin to swell or fluid shows up in other places, we will know that Josh needs the shunt.  We are still praying for a miracle!

We sit by his bedside almost all day.  Most of the time, we’re talking about what we’ll do as a family and what it will be like when we finally get to take him home.  We’re excited about normal.  Midnight feedings and dirty diapers used to feel scary.  I would trade this for that any day.  Despite the difficult circumstances and hardships, words can’t convey how grateful we are that he’s here with us. 

Leaking still? How?

We're still here.  I feel like we've been here for months and months.  So much has changed in our lives in such a short period of time.  It's a very weird feeling. 

Joshua is doing good.  As you can see from the picture above, he's been better...but he still looks cute!  :)  When his neurosuregeon checked him out this morning, he noticed that Josh is still leaking CSF.  Grrrr.  He shouldn't be leaking CSF still.  The one catheter should have been enough.  After they added the second, that definitely should've been enough.  Therefore, the doctor tilted him even more.  His bottom is at an incline which should move the fluid towards his head and allow it to drain.  The neurosurgeon wants to wait 3 more days to see if Joshua's back will heal and stop leaking CSF.  If it doesn't stop leaking by that point, the doctor wants to talk to the plastic surgeons about going back in the incision and pulling fat and tissue over the area that is leaking to help it stop.  We really don't want him to have to undergo yet another surgery, especially one that would put the healing for his incision back at square one.  We are praying that his incision would dry up independent of the plastic surgeons.

When the neurosurgeon came up, not only did he find more fluid on the gauze, but he ordered for Joshua to have a head ultrasound so that he could take a look at the ventricles again.  They needed to take the bandage off to do the ultrasound.  We were very interested to see what his catheters look like.  There are two one inch incisions on both the left and right side of his head.  The catheters are stitched in place.  It's hard to see but we know that they are helping him, which makes it a bit easier.  Good news is that there is a bit of peach fuzz growing back where they shaved my baby's head! 

I will say it again and again...we appreciate all of your mail, e-mails, phone calls, and texts.  It is all so encouraging and helps us get from one day to the next.  Most of all though, we are thankful for your prayers.  Our biggest prayer right now is that Joshua won't need additional surgery for his back. 

Two steps forward, one step back

Our morning began with a phone call from the anesthesiologist.  He wanted our consent for surgery.  That's how we found out that Joshua was going in for surgery today.  When the neurosurgery team did their rounds, they looked at Josh's dressing and found quite a bit of fluid.  When they weighed it, it weighed 4 mL.  They decided to proceed with surgery.  When we arrived, they paged neurosurgery so that they could come and  talk to us about what their plan was.  Since the CSF was still leaking, they needed to give it another outlet to leave his head.  They left the catheter in the right side of his head but put another one directly parallel to it on the left side of his head.  Ideally, Joshua's incision should dry up and heal.  There should be no leaking CSF from the incision from this point on.

So, I didn't get my wish which was to preserve the rest of his beautiful hair.  :(  Unfortunately it's not even the last of it either.  If they decide to do a shunt, they will be putting it towards the back of his head and will need to shave it YET AGAIN.  Thankfully, hair grows back!  For now, Joshua has a huge bandaid on his head.  He's extremely sleepy with all of the pain meds that they have given him.  We're looking forward to seeing a dry dressing soon!  We're on the road to healing yet again!

- Kim & Matt

Just wait 'til the end!

Our intent today was to stop by the hospital briefly this morning to see Joshua and then head to our house to exchange some things, get new clothes, and maybe even sleep in our own bed!  We didn't get very far.  We barely missed the neurosurgeon when he did his rounds this morning.  The nurse told us that he peeled back the dressing and checked Joshua's incision.  The dressing was wet and he saw more CSF leaking from the incision.  They were concerned that one of Joshua's ventricles may have collapsed or that the catheter wasn't draining from the optimal place and they would have to change the placement.  To check, the neurosurgeon ordered an ultrasound on Josh's head.  The ultrasound was inconclusive in finding the size of all the ventricles.  Therefore, the doctor ordered a CT scan of his head.  Once he read the CT scan, he told us that the catheter is in a prime location, which is good.  It was draining primarly from the third ventricle.  He wanted to pull it out 1 cm so that it would improve the drainage.  The nice thing is that he doesn't even need to go to the OR to do it.  He was able to give Joshua a little pain medicine and do the procedure right at the bedside.  It took the better part of an hour.  I'm so happy that they didn't need to go in and move the catheter to a different spot on his head, both for Joshua's healing and for us.  We feel like we're being stretched in every way, but if they shave off any more of our baby's adorable hair than they have to, I'm going to flip out! The neurosurgeon will continue to check Joshua's back throughout the weekend.  We pray that the CSF will stop leaking and his incision will dry out and heal up!  The doctor doesn't want us to hold him for a couple of days which is hard, but if it means that Joshua will heal faster, we're all for it.  So needless to say, we didn't go home.  Hopefully we'll get to at some point next week for a day or two.

Joshua continues to surprise us! As we had mentioned before, the physical therapist gave us some stretches to do with his legs and ankles and also encouraged us to massage them.  We have to be extremely careful now because they want him to lay flat so that the CSF can drain from his catheter but we can still do them.   Last night while Joshua was sleeping, Matt was massaging his feet and a smile kept sweeping across Joshua's face.  We were pretty sure that it tickled him.  Shortly after that, he kicked his right leg back!  Up to this point, any movement that we have seen in his legs is because he's been moving his hips.  We will really begin to see what his capabilities are when he gets a little older but we believe that this isn't where this ends!  Hold on little one...God's not done with you yet!    Not every tear has to be a tear of sadness! 

- Kim and Matt

Not the News We Were Hoping For

Yesterday Matt and I tried to get ready as quickly as possible so that we could see how our little guy was doing. It wasn’t long after we got to the hospital that the neurosurgeon came to do his rounds.  As soon as he took the gauze off of his back, we saw clear fluid leaking.  I could tell that the doctor didn't want to say it, but Joshua needed a shunt.  The doctor put another stitch in his back to tie up the area where the ceribral spinal fluid or CSF was leaking from and scheduled him for a shunt that day.  In preparation, they wanted a head CT scan to take a look at his ventricles.  The CT scan showed no obvious hydrocephalus had accumulated but it was obvious that he needed a shunt because the CSF was just finding another outlet.  Joshua went down to the operating room (OR) at 1pm.  The staff is great at making sure parents get consistent updates during the surgery.  They actually give you a buzzer like you get in a restaurant.  When it buzzes, you take it to the front desk and the OR calls you.  Not long after they took Joshua back, the neurosurgeon came out and told us that when he started taking out the stitches from Joshua's incision, there was CSF leaking in several places that weren't visible that morning.  If it was just leaking from the pinhole sized location that we initially found, they would have been able to do the shunt.  Since it was in several places, they wanted to put a catheter in his head ventricles (areas that store CSF in the brain) to allow the pressure that had been building to release and drain.  The doctor was concerned that Joshua could have an infection or meningitis from his insision.  The fluid that leaked out was pretty clear but he wasn't certain that there wasn't an infection.  Rather than simply closing the incision and putting in a shunt, they want the incision to completely heal on his back, give him antibiotics, and make sure that he doesn't have an infection.  The entire procedure took about 3 hours. Once the incision on his back is healed (about a week or two) they will take the catheter out and most likely put in a shunt.  After the surgery, waited for him outside the Neonatal Intensive Care Unit (NICU) to return from post-operation recovery.  When they brought him back, they wheeled him in on a adult sized bed.  His tiny body looked so sweet and fragile on that huge bed!  The catheter was sticking out of his head.  It is secured in place by a few small stiches that prevent the line from pulling out.  The neurosurgeon has still given me the thumbs up to breastfeed but I'm so scared to hold him.  He practically has something on every part of his body.  Plus, his head needs to be lower than his spine so that any pressure is reduced.

This morning when we got to the hospital to see Josh, I talked to the neurosurgeon briefly.  There was still CSF leaking from his incision.   The neurosurgeon wants his spine to be a little higher than it was yesterday to continue to reduce the pressure.  I fed him a bottle, but he continued to cry while I was feeding him.  He normally eats peacefully and maybe even falls asleep with the bottle.  Sometimes, he just looks at me in contentment.  I could tell that he was in pain.  As tears filled my eyes, I took a deep breath and told the nurse that I thought he might be in pain.  She checked his chart and it turns out that he needed a new dose of medicine.  He's such a brave little boy.  He's been through more in his 13 days of life than most go through in a lifetime.  We named him after Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."  He continues to show us his courage and strength through all of this. 

We certainly didn't want him to get a shunt, but Matt and I walked into this knowing that if he needs it, he needs it.  He needed this procedure.  The risk of meningitis or some other infection is too likely without it.  Again and again God is teaching us to trust Him.  We were hoping to bust out of this place a bit sooner than a month but it's looking like that may not be possible.  

On a positive note, the sleep study showed no significant problems.  His saturation level (amount of oxygen in his blood) dipped a little low at times but the pulmonologist wasn't concerned.  He wants to do a follow-up at some point but it's nothing to be worried about.

I forgot to mention before that when the neurologist saw Joshua's MRI she ruled out any problems with his brain.  Initially they thought he had something called migrational disorder.  However, she said that what she saw was typical of kids with mylomeningocele (the type of spina bifida Joshua has).  Her exact words were "This kid can do anything!"  We have high hopes of a bright future for our little guy!

-Kim and Matt

Still Healing

It wasn't a very exciting weekend.  We had some visitors which was fun!  Other than that, Joshua didn't really have any new updates.

Yesterday and today have been a little busier.  His saturation level of oxygen in his blood has dropped below "normal" several times.  This is the reason that he has been on oxygen in some of the pictures.  They don't feel comfortable with sending him home with his saturation level dropping this often.  They think that one of the reasons that they might be dropping is because he gets in a deep sleep and has brief pauses in his breathing.  Therefore they ordered a sleep study for him.  This will give them an idea if his saturation level is dropping because he gets into such a deep sleep.  It's ironic that he's here because of spina bifida and they are worried about his sats dropping.  It's almost scary having him hooked up to this many machines because when we go home, we won't have any machines.  We will have to rely on our parental instincts.

Last night Matt signed me up for a women's spa night.  There was a salon and church that donated their time and services.  We had a very nice dinner followed by our choice of 2 out of 6 services.  Each of the services were 30 minutes long.  They had pedicures, hair cuts, massages, manicures, facials, and make-up.  I chose to get a massage and my hair cut....wonderful!  It was such a blessing for all of us.  It was also comforting to talk to other women who are in the same position as you are, living at the Ronald McDonald House or having children who are hospitalized.  Having Joshua in the NICU and going to this event has opened my eyes even wider to other people's situations.  There are so many who have been here for months or even a year.  With some of them it's an issue of recovery or maturation, and others have issues that they will struggle with for the rest of their lives.  We are not in the worst position.
 
Today when the doctors were doing their rounds, we pointed out some fluid that we noticed leaking on Joshua's back.  They paged the neurosurgeon who came to take a look at it.  When he saw it, he decided to put an extra stitch in the place where the fluid was leaking.  We don't know if it's cerebral spinal fluid (CSF) or fluid that has built up underneath the skin.  It may not be CSF because it wasn't coming directly from the incision, which is where CSF typically leaks from.  It was about 1cm away from the incision.  Please pray with us that this isn't CSF.  If it is CSF, it may be an indication that Joshua would need a shunt.  We should know within 12 - 24 hours if it is.  After they did the stitch in his back, they did an ultrasound on his head to look at his ventricles again to see if any hydrocephalus has developed.  The CSF could be an indication of hydrocephalus.  It looks as if his ventricles are still the same size.  They have put gauze on his incision to see if it absorbs anymore fluid.  He will be monitored closely during the next 24 hours and his incision will be checked often.  He is laying on his tummy to avoid extra pressure on the incision.  There is still hope for him!

We still don't know when we will be going home.  I'm sure people are getting tired of seeing us in the same 6 outfits. We're tired of seeing ourselves in the same 6 outfits!  As much as we want him home though, we want him home and healthy!  All in good time....




This is Joshua after his hearing test... which he passed :)

Over a week old!

Lots has happened! Yesterday when we held Joshua, we were able to snuggle closer to him.  We spend a lot of time watching him, feeding him and changing his diaper.  Matt's becoming quite a pro at diaper changing.  I'll feed him and Matt can change diapers...I love that idea.

I'm looking forward to losing the baby weight. It will be nice when people stop thinking I'm having a baby.  About a half dozen times I've been in the elevator and some bold human being asks me when I'm due or wishes me a "Happy Mother's Day" to an expecting mom.  It usually gets very uncomfortable for everyone else in the elevator when I tell this person that I delivered not too long ago.  That elicits an akward pause in the conversation.  However, just yesterday someone told me that she didn't think I looked like someone who just had a baby...FINALLY!

Today has been crazy.  We got to the NICU at about 8:30am.  We hung out with Joshua for a bit and then the doctors started doing their rounds.  We met Joshua's neurologist, got an update from his neonatologist, and an update on his incision from the neurosurgeon. 

The neurologist is waiting on an MRI for Joshua.  He is actually in the middle of it right now.  This will hopefully give the doctors a good idea if he has any brain abnormalities.  We'll most likely hear back from them tomorrow.

The neurosurgeon said that his incision looks like it's healing great.  He can be laid on his back which is important for his MRI.  But the best news is that we can finally hold him!  I mean actually hold him!  It was such a great feeling to finally cradle him in my arms.  It sure makes feeding him a whole lot easier too!

We also met with the physical therapist who taught us some stretches to do with Joshua's legs at home.  This will help keep his legs loose and limber. 

The orthopedic doctor came by and looked at him. Unfortunately we weren't there because it was during the hours that the NICU is closed.  We should be able to meet with him on Monday. 

As you can see...a busy day!  We're still at the hospital and a little exhausted.  Looking forward to getting the MRI results tomorrow and hopefully breaking out of here before too long!

-Kim and Matt

PROGRESS!

Sorry it has been a few days since our last update, but it has been a little chaotic.  I was discharged Monday at 4:30 from the hospital (it was supposed to be noon). Literally, in the last hours of my stay at the hospital, there became availability at the Ronald McDonald House. Huge relief! Unfortunately, the Ronald McDonald House doesn't have internet access. In combination with a crazy schedule, it has been difficult to update. I apologize.

Joshua's last few days have been really productive. All the doctors do their rounds in the morning hours between 7-9, so Matt and I try to get to the hospital by 8am (when the NICU opens). His neurosurgeon has been monitoring Josh's head to see if hydrocephalus has developed. The day after his surgery, his head size increased slightly. We thought that would be the beginning of a steady climb. However, by the next day, it decereased back to the original size. Since then, it has not grown AT ALL! God continues to show how faithful He is!! So, if it continues to maintain no growth, we will be going home with no shunt, which is exciting... a little scary, but most of all exciting. Typically if hydrocephalus is going to happen, it forms within a week of when the surgery for the closure is performed. Then, after that week, the possibility of needing a shunt goes down. After the first year of life, if no need for a shunt has presented itself, the possibility decreases dramatically.

They took the bandaid off of Joshua's incision two days ago. The neurosurgeon warned us that it wouldn't look pretty, and he didn't lie. However, he was really happy with the closure. When they do the closure, they try to pucker the skin as much as possible to prevent cerebral spinal fluid from leaking. So, even though it looks scary, the doctor is really happy with it. Of course it is really emotional to see Joshua's back look like that, but since the doctor is happy, and we're happy. It's about 4 inches long and is risen off of the skin about 1/2 an inch.  As Joshua grows, it will flatten out more.  They are keeping the incision clean by routinely washing it.  They also have what are called "mud flaps," (yes...that's what they are called and that's what they look like!) to protect feces from entering the incision.  It basically looks like saran wrap that sticks to his skin right below the incision.  The plastic is then folded back and sticks out of his diaper to prevent a rash.  His diapers are worn backwards so that it is easier to clean him up.

They are also continuing to catheterize him to see how much urine he is not empyting from his bladder.  They will allow up to 20 ml to be left in before they feel the need to be on a catheterization plan.  They begin by catheterizing every 4 hours.  Then they move to 6, 8, 9, and 12 hours.  He is now being catheterized every 12 hours because the amount of urine hasn't been too significant. This is great news because it means that we will most likely not need to go home on a catheterization plan!  Only time will tell.

Orthopedics have completed x-rays and have discovered that he has dislocated hips.  We haven't met with the doctors yet but they will tell us what treatment will most likely look like when we see them.  At this time we also have not noticed any movement in Josh's legs and feet.  Please, please, please pray for healing.

Originally the doctors told us that I wouldn't be able to breastfeed for at least a week after surgery.  When we talked to the neurosurgeon yesterday and he gave me the thumbs-up to start trying.  Of course I am not able to hold Joshua like I typically would but it is exciting to be able to start feeling more like a mom and less like an observer.  The only way we've been able to hold him is by laying him tummy down on a pillow up to this point because we can't put pressure on his back.  Today I got to have him nuzzled up close to me while he layed on his side.  These small victories mean the world to us. 

The nurses have been doing a great job of preparing us to take care of him.  We are starting to feed him more, change his diaper, and tomorrow we will learn how to clean his incision.  He's finally starting to feel like ours!

So as you can see, God has been doing some great things.  He has also continued to stretch our faith.  Thank-you everyone for your e-mails, calls and text messages.  We haven't been great at returning all of them because of time constraints but they have encouraged us in ways that words can't express.  It doesn't feel like we're alone here...we have all of you with us. 

Kim and Matt

Happy Mother's Day!

Happy Mother's Day to all the moms!  It was a beautiful Mother's Day for me. We headed over to the NICU this morning at about 8:30am.  Joshua had a really great night.  They had him on oxygen all of yesterday just to be safe.  He was teetering on needing it and not needing it.  It kept falling out of his nose anyway because he only lays on his stomach. Since he did so well without it they decided to remove it. 

When I came in, the nurse told me "Joshua and Brandi (his nurse) made something for you last night."  They had put Joshua's handprint on a little paper doylie for Mother's Day.  It made my heart melt!  I held him on his little pillow for about an hour.  I had to leave for a bit and when I came back they told me that I could feed him his first bottle!  Originally the nurses said that they were going to attempt to give him a bottle after he was finished with his morphine.  Since he was so alert though, they felt that it would be a good time to be able to try.  Plus they knew it would be special for Matt and I to be there.  He didn't take the bottle as well as we would have liked but he drank about half an ounce and the nurses said that it was successful being as how this is the first time he's drank from a bottle.  They were going to try 2 more times tonight.

I love the nurses here!  Both at UAB and at Children's Hospital.  We couldn't have asked for better people to be working with our little man and myself.  The nurses here at UAB have sympathized with my situation and been completely understanding about me coming and going.  Joshua's nurses have been extremely caring and have made some of the milestones like holding him and feeding him possible for us.

Please continue to pray for joy and peace for us. We pray Romans 15:13, "May the God of hope fill you will all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."  We are literally only held together by the Lord and one another these days.

Our first family photo! It's Matt and I and in that little tiny box in the corner is Joshua. :)

The first time I was able to touch Joshua Eli.

2 Days Old!

I can't even begin to explain to you how cute this little boy is!  Of course I'm partial but believe me when I say HE IS PERFECT!

Today started with us rushing around this morning so that we could quickly get to Children's Hospital to see Joshua.  We were told that today we would probably get to hold him so we didn't want to delay.  It was so wonderful....needless to say, an emotional moment.  Since his back is in the process of healing, he had to lay on his tummy.  They put a pillow underneath him and a little "donut" for his head and he was able to lay on our laps for about an hour each.  Lucky for Matt, I needed to pump otherwise I'm not sure I would have let go of him.  This gives us so much excitement for when we get to pick him up with no restrictions and cradle him in our arms.  We probably won't put him down for a year! :)

They still haven't fed him yet. He's getting lipids and vitamins intravenously for nutrition.  They didn't want to feed him before his surgery and now he is on morphine for pain so they don't think he would be very receptive to a bottle.  They don't foresee me being able to nurse him for at least another week unfortunately.  Something else to look forward to!

We went back to UAB so that I could rest for a few hours while the NICU is closed for shift change between 2pm and 4pm.  We visited him again tonight for a few short hours.  I had to take it easier today because I pushed my body too far yesterday.  My nurses weren't very happy with me but I don't regret a second of it. :) 

We look forward to seeing him again tomorrow. It will be my first Mother's Day and a wonderful one at that! 

It's a Boy!!

Yesterday Joshua Eli was born at 10:15am at 7 lbs 11 oz and 19 inches long. He surprised us in a few ways...he was much bigger than we thought he would be, he has a head full of beautiful brown hair, and he was a boy:) It has been so exciting to meet the baby that we've been imagining for so long.

As planned, we had an amnio scheduled for May 4th to check to make sure that the lungs were mature.  The doctor went ahead and schedule me for my delivery on May 5th being 95% sure that everything would be in order for a May 5th delivery.  I began prep for my c-section at 8:00 and was finally wheeled into the OR at 9:45. They got him out at 10:15. Because the sac that covers the exposed area on his back was ruptured, they took him into a separate room within the OR immediately to cover his back with a sterile plastic covering and placed him in an enclosed isolet. It was then that we first saw our beautiful baby boy. Man is he chubby, especially considering that during the amnio the day before they measured him at 6 lbs 10 oz. My OB shared after Joshua's delivery that the only fluid she could find to take during that amnio was right next to his penis...we were none the wiser:)

Rather than the original timeline of 4 hours with us at UAB hospital, the doctors and nurses felt that it was in Joshua's best interest to transport him over to Children's Hospital 2 short hours after his birth due to the risk of infection to his back since it was ruptured. Matt was able to be with him while he was transported and my sister was able to come and be with me in the OR recovery. The nurses told me that with permission or not, they were going to find a way for me to see him even if it meant wheeling him in with a blanket over his cart:) Allison and I were in conversation when we suddenly heard the tiniest muffled cry because he was in his isolet. When they brought him in, they opened his 5 inch round window and we had our first physical contact by holding hands. Though this seems small, it was the highlight of my day.

Once over at Children's Hospital, the NICU did their own assessment and got him settled in while Matt handled his paperwork. We're very pleased with the quiet, peaceful environment that Joshua is in and how loving the staff is. It helps us sleep at night knowing that he's receiving such good care.

By the end of the day, Matt was able to meet with Joshua's neurosurgeon, neonatologist, and anethesiologist. They put Joshua on the schedule for early the next morning to do the closure on his back. Needless to say, I was exhausted from delivering and Matt was exhausted from running back and forth.

Today we arrived at Children's Hospital at 6:30am to meet with the neurosurgeon before Joshua's scheduled 7:30am surgery. It was a very emotional moment when I was able to be reunited with Joshua since I was only able to spend about 2 minutes with him the day before. He had received a sponge bath that morning and the nurse gave him "church hair"....it was parted and combed down on each side of his head.

The OR staff brought Matt and I back with Joshua to where his surgery would take place. We got to say good-bye and they gave us a pager for the OR staff to contact us every hour to give us updates. Surgery lasted a little over 3 hours and we got 4 updates. Each update was very positive about his progress. Since Joshua's repair was quite large and a little tricky, the neurosurgeon called in his colleague to work on one side while he worked on the other. After the surgery was finished the neurosurgeon spoke to us about the healing process which will likely take 4-6 weeks (not the original 2 weeks that we were told). He will lay on his stomach for the first week to allow his back to heal. If by next week he needs a shunt, they will do the procedure at that time. The doctors still do believe that it's a 90% chance that Joshua will need a shunt. We're really hoping to get the opportunity tomorrow!  Joshua is on a morphine right now.

The nursery closed from 2:00pm until 10:00pm today because there was an emergency so I took the opportunity to head back to UAB to get some rest and continue to recover from the c-section. Even though I need the rest, we were excited to possibly have the opportunity to hold Joshua for the first time tonight. Unfortunately it just didn't work out.  So we're hoping for tomorrow!

Thank you all very much for your love, support, encouraging messages, and most of all, prayers. Please pray for peace, upcoming tests that Joshua will have, as well as shunting and God's healing for him. We will put up another update tomorrow!

35 weeks and counting...

We're 3 weeks away!  Time is flying by.  We just had another appointment this past Tuesday.  The baby's ventricles still look within the normal range.  Great news again!  Although the doctor still predicts that the baby will need a shunt because of the size of the sac on the baby's back, we are praying for a miracle.

An amniocentesis has been scheduled for May 4th.  They will process the results and as long as the lungs are mature, we will pursue delivery on May 5th.  We are going to have a Cinco De Mayo baby!  Maybe we'll have a celebratory flan!  :)

Please keep our little one in your prayers during these last few weeks!  We are still praying that God will do a miracle!

Almost There....

Well, I can't believe that we're weeks away from delivery!  It's definitely starting to feel real!

We've felt at this point that we generally knew what to expect but we needed some more information.  So therefore we walked into this last appointment hoping to get a better idea of what the delivery will be like along with the recovery for both me and the baby. 

It was a routine check-up...well as routine as these check-ups are.  The doctor performed an ultrasound and measured the ventricles in the brain, checked for movement in the legs, and checked the opening and sac on the baby's back.  The ventricles looked approximately the same size. This is fantastic news!  It doesn't mean that they won't increase in size but if they stay roughly the same size, growing in sync with the baby, it gives us more hope for when the baby is born that he/she won't need a shunt.  The muscles in the legs weren't atrophied which is also great news!  We've got something to work with!  Lastly, the doctor checked the sac on the baby's back.  Our doctor said that the sac as of right now is about the size of a baseball.  We asked the doctor what she thought would be the best option for delivery.  Her recommendation at this point is that we do a c-section.  Doing a c-section minimzes the pressure on the sac.  The last thing that we want is for the sac to rupture!  There's still a chance that I will have a vaginal delivery but if the sac continues to grow with the baby, as it has up to this point, we will most likely opt for a c-section. 

It's exciting to be this close to meeting our little one!  Our next appointments with both our doctors at UAB (Birmingham) and in Prattville are in the beginning of April.  Meanwhile, we are getting the house cleaned up and the baby's nursery ready.  It's so fun seeing it come together!  Watch out for our next post after our April appointments! 

Our Recent Appointments

Whew! It's been a busy week.  We recently returned from appointments in Philadelphia. We were exploring the option of fetal surgery.  They performed a 2 hour long ultrasound, an MRI, and a pediatric ECHOcardiogram. Through the ultrasound and MRI, we discovered that the baby's opening is higher than originally diagnosed.  Rather than a L4 lesion, the baby has a L2/L3 lesion.  This is significant because wherever the opening may be, it indicates to some degree what we can expect for the baby's mobility and bowel and bladder control.  We had looked into this option to have fetal surgery ourselves.  The theory behind fetal surgery is that by repairing the baby's opening in-utero, the surgery could possibly reduce the need for a shunt when the baby is born and possibly give the baby more mobility.  To sum it up in a nutshell, we learned a lot of information that made for a compelling case to go through with fetal surgery.  With that being said, there were far more risks that outweighed the very small chance of reward.  In the end, we decided to go with the traditional route because we couldn't bear the thought of possibly losing the baby, which was a risk.  This decision caused us a lot of heartache but we truly feel like it's the best one.

Yesterday was our appointment in Birmingham.  We met with a pediatric neurosurgeon, another OB-GYN, an RN, a physical therapist, and the coordinator of the spina bifida clinic at UAB.  The neurosurgeon gave us a summary of what we can expect when the baby is born based on where the lesion is and how big the sac attached to the opening is. At this point in the pregnancy the neurosurgeon predicts that the baby will need a shunt soon after he/she is born. 

Our meeting with the physical therapist and coordinator of the spina bifida clinic gave us insight into our baby's future.  Spina bifida clinic is a program that the baby will be involved in after the he/she is born.  Through this clinic we will see a physical therapist and other doctors that are necessary in our baby's development.

We can't begin to express how much heartache this last week has brought.  Forced to make these kinds of decisions is something that just cannot be expressed in words.  Both options presented advantages and disadvantages.  We spent a lot of time seeking the Lord and meeting with some of the best doctors in the country.  Though that was difficult, it gave us an opportunity to learn new information and have different opinions from a variety of physicians.  We'd like to express our sincere gratitude to everyone who has been praying for us and helping us through this entire process.  Your prayers and the Lord's joy are what enables us to approach each day with smiles on our faces.  We love this little baby and seeing his/her face on ultrasound makes our hearts melt.  As a reward, we now have 27 pictures of our baby and most likey there are more to come!  When you think of us please continue to pray for peace with our decision, hope from the Lord and healing for the baby.  In the words of a dear friend "We've put our hope in God, now lets give Him the opportunity to show off!" 

Getting bigger!

Well, I'm definitely getting bigger!  Our last ultrasound measured the baby to be just over a pound! 

Recently we had another appointment.  Since my pregnancy is high risk, the doctors will be monitoring the baby with ultrasound more regularly.  Some of what they are looking at is the baby's skull and brain to make sure the ventricles stay open and measure as normal.  In many cases of spina bifida, hydrocephalus occurs.  The opening on the spine causes traction, which pulls the brain back.  When the brain is pulled back, it closes some of the ventricles in the skull. This then causes swelling.  To counteract this problem, they put in a shunt.  A shunt involves a small tube that prevents the brain from swelling. 

They also gave us a dvd of the ultrasound at this appointment.  We love watching all 7 minutes and 29 seconds every chance we get!  It's such a joy everytime we get to see our little peanut!

Our next appointment is on February 4th.  This is a very important appointment because we will be meeting with a panel of doctors and nurses.  The panel will include the baby's neurosurgeon, my OB-GYN, a geneticist, several nurses, and others.  They will do another ultrasound so that the assembled panel of doctors can better see the spinal opening.  Naturally, we have many questions that we are hoping to get answered. We would appreciate your prayers for the upcoming appointment.

Thank you to everyone who has been lifting our little baby up in prayer!  We feel very blessed.  We continue to pray for God to heal and that He would be glorified through this!

Kim

Baby Olson

It's hard to believe that we are already halfway through!  The baby is 21 weeks old.  The due date was readjusted at our last appointment.  Currently it is May 18th. We're so excited!

On December 16th we had an ultrasound. We unexpectedly found out that our baby has a birth defect called spina bifida. Spina bifida occurs in 7 out of every 10,000 births. Although this is a rare occurence, spina bifida is actually one of the most common major birth defects.  There are varying degrees of severity based on where the opening is on the spinal cord.  In the most severe cases, the defect is very high on the spine, at the base of the brain.  This would cause little to no brain function and complete paralysis.  The lower the defect on the spine, the better. Essentially, all of the nerves below the opening will be damaged.  At the lowest part of the spine, near the tail bone, paralysis is probably unlikely however, there is the potential for loss of bladder and bowel control. 

As with most situations like ours, we were referred to a specialist at a high risk pregnancy clinic in Birmingham, AL.  Our appointment was at the beginning of January.  The doctor performed a detailed ultrasound evaluating everything from the brain and skull to each individual toe.  After the doctor was finished with our ultrasound, he gave us his prognosis.  He found an opening towards the bottom of the spine in the lumbar area (lower back).  It isn't on the lowest point, which is what we were hoping, but it is relatively low which is good news.  Based on the average case, kids with the opening where our baby's is will experience difficulty walking and loss of bladder and bowel control.  

Originally, the delivery would have been in Montgomery.  However, because of the special circumstances we will be going to Birmingham for the delivery.  After the baby is born, he/she (we still decided not to find out!) will go into surgery within the first 24 hours and a neurosurgeon will close the opening by pulling muscle and skin over it.  This will also prevent the baby from getting dangerous infections. 

Obviously this is difficult news to hear as a first-time parent.  However, we refuse to let this interrupt the joy of receiving our firstborn child.  If possible, we love this baby more now than before!   We believe that God has a divine destiny for this little one and we hope to become better people through this experience.  Even though this certainly isn't an ideal situation, our greatest wish is that this baby will not come into the world surrounded by disappointment.  Rather, please pray for miraculous healing and above all that God would be glorified through this experience.  We are so thankful for the joy that God continues to give us everyday despite these circumstances!

Below are some websites that we found helpful after we initially found out:
http://www.mayoclinic.com/health/spina-bifida/DS00417
http://en.wikipedia.org/wiki/Spina_bifida