HAPPY SECOND BIRTHDAY ELIJAH!!!!!!!!!!!

Wow so much to update! Surgery went great! The Dr was very pleased with how it turned out. We were released after only 48 hours!! We had to be readmitted several days later for concern of shunt failure or meningitis. After many tests and blood work we were able to go home again. He began crying non stop for several days after this but we were able to adjust and add some meds without being admitted. The Neuro surgeon believes his brain is trying to adjust.

Watching Elijah transform from the frail, tiny, lifeless boy that was handed to me on Jan. 23rd has been so amazing!!! Prior to this latest surgery he was in constant pain...even after his shunt was placed. Moving him was torture, even a simple diaper change made him scream. Bathing him was something I dreaded....I know he hated it more than I did!!!! It took him so long to calm down after a bath. He never made any sounds prior to this last surgery, only crying. SO basically he would just lay there. He obviously could not roll, only minimally move his legs and arms.

OK so fast forward to May 21st....this is the day we began to see the NEW Elijah!! On this day we were all in the family room and we heard "ba, ba, ba" OH my gosh we all looked around trying to figure out who was making those sounds. Sweet Elijah was talking!!!! It was the most beautiful, precious sound I have ever heard!!!!! That was not the only change, he loves to be held!! He is still in some pain when I pick him up but nothing even close to where he was before the surgery. Moving him is so easy and he is able tolerate being in a variety of positions. He continues to "talk" and is moving is head lots more. He is figuring out that he can move his head and look straight up... he obviously could not do that before surgery. He is really more interested in toys and is working very hard at holding them. He is currently weighing 15 pounds 7 ounces!!!!!! AND he is looking like he is trying to smile, he is making different facial expressions, so very adorable!! He really is a brand new boy.....I just can't wait to see how far he goes!!!!

WITH GOD ALL THINGS ARE POSSIBLE!!!!!

Short surgery update

Elijah had his surgery yesterday, actually. There were some computer issues and we didn't get the previous update out until tonight. However, he came out of surgery with his encephalocele (his bump)completely removed. He looks like such a different littel boy. However, he lost more blood than they counted on so he needed a transfusion. He needed to be in the ICU for a while as his blood pressure and heart rate kept getting much too high. He was doing better after a few hours (though not super) and was then moved to the neurology floor. Please continue to pray for Elijah as he has a lot to go through for his recovery. We'll post photos when we are able. God has brought him this far, we can't wait to see where he goes.

GOODBYE ENCEPHALOCELE!!!!!!

Sorry for the long lapse between posts...we have been very busy!!! Sweet Elijah has been hanging in there. He continues to be in pain. But TOMORROW is his long awaited surgery!!!!!!! On May 12th at 9:15am he will be having a procedure called a cranioplasty. The surgery will be about 4 1/2 hours. He will go to ICU for at least 24 hours and then hopefully if he is doing well move to the neuro floor where he will stay for about a week...all this is depending on how he does. Can you please be praying for Elijah...he has been thru so much. Our prayer is the surgery is successful in that he wont be in anymore pain and that just maybe he will smile for the first time!!!! Please be in prayer for Dr. M and all of his nurses who will be working on Elijah. I will update as I can tomorrow from the hospital.

Thank you so much for praying for Elijah!!!!!!!!!!

Sweet Elijah update

Elijah had something called a FEES (Fiberoptic Endoscopic Evaluation of Swallow), basically the Dr put a scope down his throat with a camera at the end of it. What we found out was he does not have a safe swallow. When his vocal cords were touched he did not respond for almost 2 minutes and then he finally coughed. He has a very delayed cough. Good news is he is not aspirating on his saliva. He is however aspirating on food and drink. So basically what the Dr said is he most likely will have to be fed thru a tube for a long time...if we try to feed him by mouth he is at great risk for aspiration pneumonia. Not the news we wanted to hear but we will continue with more testing, the next test to see if he is refluxing what is in his stomach.

On April 12th he has an MRI to see if his ventricles have decreased in size and then on the 13th he gets his stitches out...YEAH!! I can tell his head feels different and looks a bit different. He is still uncomfortable and grumpy, but the shunt is set at a very slow flow rate. I expect the Dr to increase this flow rate at the appt on Tuesday.

He continues to gain weight and is really just the cutest thing in the whole world....we are all in love with him!!!! Check out the latest pics of our cutie!!!!

Surgery photos update

Here are some photos of Elijah at the hospital.

A tearful handoff

Recovery room

He has three different incisions. 2 on his head.

One on his belly.

Doing great with his CT scan

Surgery Update

YEAH...surgery when great!!! No problems placing the shunt. We are in our room waiting for a CT scan. He is having some trouble with retching and vomiting. We are just doing lots of suctioning. We are going to try and start his continuous feeds soon. We will not be able to go home unless he can tolerate his feeds. He has a great new hairdo...shaved on halve of his head!!!

The surgeon said he has extensive brain damage and that he would be full care the rest of his life. This is good info to know and tuck away but what we are really waiting for is God to reveal what amazing plans HE has for Elijah. It is so wonderful to take him out and for people to stare at him...I love this...it gives me an opportunity to share how God saved his life. Elijah is a little witnessing machine by just being his precious little self, how cool is that!!! He is touching peoples lives by just his presence. We are loving this journey....we are a little tired but would not want to be doing anything else!!!!!

Surgery TODAY!!

Please pray for Elijah today, he has his surgery at 9:15am (eastern) to place his shunt. There has been LOTS of communication between all of his Drs.....although he has gained weight they are still concerned for how malnourished he was...praying this does not present any complications during surgery. Also his sodium is low. No matter how much we replace we cannot get his labs to budge. This is concerning to the anesthesiologist as it could definitely present some serious complications during surgery.

I will update as I can later today. Thank you so much for praying for this amazing little boy!!!

Small update

Poor Elijah. As his head circumference grows daily so does his discomfort and pain. Bath time is especially difficult for him. We give him some meds before bath time to try and make it more tolerable for him....it just takes the edge off. He froths at the mouth and shakes. Here are some pics after bath...he is trying to settle down.

We have not seen a smile from him yet...his birth mom said he has only smiled once. We are hoping and praying once the pressure is relieved with the shunt he will begin to show more emotions other than crying from pain.

Surgery update

We were able to have our appointment with Neurosurgery today... He showed us Elijah's MRI and we talked about surgical options. He told us he has severe hydrocephalus. He does have a small band of brain in his encephalocele, but mostly it contains cerebral spinal fluid...this is great news!! So the plan will be to place a VP shunt. Depending on how he does then approximately 4-6 weeks later the surgeon will remove the encephalocele. He is at a higher risk for complications due to the severe malnutrition he suffered. BUT he feels that he has gained enough weight to proceed with the surgeries.....YEAH!!!!!!!! This is what we have been waiting for...we pray this will relieve the pressure he is constantly feeling. The bad news is it is unclear how much damage has been done due to the hydrocephalus going untreated for so long. The Dr said he was not sure if Elijah would ever be able to walk, or talk. We have learned long ago not to put our faith in Drs but in our true savior who knows the plans He has for us....and we know that He has big things planned for Elijah...he has already touched so many peoples lives with just his beautiful eyes!!!!! How exciting to have front row seats to watch his story unfold before our eyes!!!! The big surgery day is March 31st....would you please pray with us!

A little update since Elijah has been in the states.

WOW, what a busy 7 weeks it has been!!! Let me try and back up and fill in those last weeks. Elijah arrived on January 23rd. When I first saw him being carried out of the immigration office in an isolate, I could barely believe my eyes. He was so tiny and frail. He looked like he may die right then. Getting on a plane and to our hospital was my goal. He needed to be admitted right away due to severe malnutrition. He does not have the ability to suck, so an NG tube was placed and continuous feeds began (feeding pump, 24/7). Blood draws were done round the clock and he was hooked up to all kinds of equipment to monitor....they were very concerned with trying to re nourish him slowly without putting too much strain on his organs. He was able to come home 5 days later. However, the reason that Elijah came to the states was to treat the hydrocephalus and the encephalocele. This could not be addressed until he was more nutritionally stable. SOOOO our one and only goal.....other than to give him as many kisses as possible in one day...was to put some weight on his almost two year old tiny body.

So fast forward to today. After LOTS of appointments, twice a week blood draws, 24 hour feeds, flipping him to avoid pressure sores from the weight of his head, lots of crying due to pain and agitation, lots of kisses, lots of cuddling.....HE HAS GAINED 3 POUNDS and 6 OUNCES!!!!! He looks amazing!!!! He is such a joy, we are so honored to have the chance to care for him. We treasure everyday he is with us. We pray for his birth mom in Haiti, who did an amazing job keeping him alive with no recourses at all!!! He is truly a miracle baby....God has great plans for this sweet boy!!!! More good news to come......

Elijah "before"

Elijah "after"
Elijah "before"Elijah "after"Elijah looking adorable.

Photos

Here are a few photos of Caleb shortly after he arrived in the US. He has a lot of weight to gain before they can do any sort of surgery.

Meet Caleb (Elijah)

We first heard about Caleb (Elijah as he is being called right now)when he was only 4 months old. His mom came to us seeking help for her baby boy. He has hydrocephalus and encephalocele on the back of his neck. An encephalocele is a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull. Without the proper medical care, this could be deadly for a child.
From the time we first heard about Elijah, we have been trying to get him care in the USA to remove his "sack". Because of limited testing available in Haiti, it was very difficult to get anyone to commit to his care as they could not fully tell how involved his "sack" might be. Whether it just contained fluid or actual brain matter. We hoped and prayed that it was just fluid and could be removed.
Finally, after the earthquake hit, we had a doctor and hospital agree to his care and with the help of US officials, we were able to get Elijah into the USA for his care. However, by this time, it has been 1.5 years since we first heard about Elijah and his health has greatly deteriorated. His mom has done an amazing job caring for her little boy for as long as she has. The fact that he is even still alive is an amazing testament of her love for him. Please pray for Elijah in this very long road to healing. He is still very critical.

Elijah at 4 months old when we first heard about him. Elijah at 4 months old when we first heard about him. He was a decent weight.Elijah visiting at 6 months old. He is almost constantly in pain from the pressure in his head.
Elijah at 15 months old. He has not been able to adequately gain weight and his sack has growing in size. Elijah at 15 months old with his mother.