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.