Our little prince continues to keep us laughing......and at times rolling our eyes at his drama :).  He is finding his "voice" more and more and loves to have babbling conversations with daddy during and after his bath each night.  He continues to be enjoying his baby food explorations and we have learned that squash and peas REALLY get the boy going, so there is no longer a need for prune juice around here.

We did have a neurologist appointment yesterday and after he looked at the video examples we had of Bennett's twitching/shaking, he has decided that he would like to have a 24 hour EEG done at home.  He suspects these episodes are seizures, but wants to confirm that with the EEG.  Obviously the word seizure is not fun to hear, but we see some positives, if they are indeed seizures, because 1) they can be treated with medication, 2) he will most likely outgrow them, 3) they are not doing any damage to his brain, but are just "power surges" in his brain pathways, per the neurologist. 

We hope to have the EEG done within the next week or so, once insurance gives pre-authorization, so we ask for prayers during that 24 hours.  We have already been entertaining ourselves with all the ways our prince is going to react to having hundreds of probes glued to his thick head of hair.  We will let you know once the date is nailed down, but we ask for continued prayers for Bennett's brain, development, and the upcoming testing.

And since we're on the topic of his hair, all we can say is that it has a MIND OF ITS OWN.  We refer to him as "Kramer baby" a lot because no matter how much we try to wet it down, it is usually sticking straight up within 30 minutes.  Of course we love it and think it is precious- we just wanted to clarify that we are not intentionally spiking it for fashionable reasons.

Once again, thank you for all your love, support, prayers and encouragement for "our" Bennett.

Love,

Kelly, Travis & Bennett

UPDATE:  Bennett's 24 hour EEG will be Monday morning, 3/31, until Tuesday morning, 4/1.  They will put all the probes on him and wrap his head in guaze, so we are preparing for him to be "Aladin baby" instead of "Kramer baby" for those 24 hours- bless his heart, the boy is going to miss his bath so much that night!

Mr. Bennett has entered the world of teething the past 2 weeks and we are all surviving.  So far we have 2 bottom teeth that have broken through and it looks like the top 2 are right about to break through.  Needless to say our some-what happy post-withdrawal baby has been quite fussy and there are few things that keep him content, other than being held.  He doesn't even like his mobile these days, so we KNOW something is hurting him.  If anyone has any helpful teething tips we are more than willing to take suggestions!

Other than that, Bennett continues to explore the world of baby food and this week we introduced some exciting sweet potatoes......they were so exciting that they literally put him to sleep - see the pics for documentation of that hilarious event. 

We continue to have lots of PT going on throughout the week and next week we will have our last NICU follow-up appointment and will see our pediatrician for a follow-up.  Bennett's twitching/tremors continue, so we are video-taping examples to show the neurologist in our next appointment.  We continue to ask for prayers for Bennett's brain growth, development, and reduction of his twitching.

Some great news is that last Wednesday, March 5th, was Bennett's first day of his LIFE to have no medications given to him.  He has been completely weaned from his high blood pressure and reflux meds and seems to be doing great off of them.  Our tiny tiger continues to keep us on our toes, but we think he is getting super pumped about watching his first year of March Madness! 

Love,

Kelly, Travis & Bennett

Due to a bit of cabin fever and decent weather, Bennett had his first venture out to the mall this past weekend and seemed to like it!  His parents probably screamed Nervous First-time Parents to anyone walking by us, but we survived the outing (of course we did not get him close to anyone who might have had the opportunity to breathe on him) and we look forward to future ventures.  Bennett screamed the first few minutes we were there, but once he opened his eyes he loved looking at the sunshine coming through the skylights and seemed to enjoy the hustle and bustle of all the shoppers.  We also enjoyed a family walk around the neighborhood where he took a nice, long snooze in the Baby Bjorn while enjoying the sun shining down and a light wind.  At one point when he woke up we heard a giggle and looked over to see him cracking up at the sky - what a gift!

Bennett's neurologist appointment went well last week.  We will not be doing any more tests at this point because he thinks that the tremors Bennett is having are associated to his CP and brain development.  As a result of Bennett's brain damage suffered (because of a lack of sufficient oxygen due to the infection) it appears that his brain is growing slower than normal.  Thus, we boldly ask for prayers that Bennett's brain will continue to grow and grow.  We have asked God for many big things these past 6+ months and our requests continue because we know there is nothing that He can't do.  His mercy, comfort and strength are our refuge.

Other than that, we just continue to take one day at a time and enjoy our precious prince.....yes, he is getting quite used to his life as the prince of our castle.  He is very good at communicating what he likes and dislikes- he has his favorite books (especially Moo, Baa, LaLaLa by Sandra Boynton which is read 30 times a day) and not so favorite books; he has moments when he loves his pears and moments when he loathes his pears; and he has moments that he loves looking at his mobile and moments when he would rather be sitting on daddy's lap watching basketball (preferably UT).  God has been very good to us and we continue to thank him for the blessing of Bennett's life.

Love,
Kelly, Travis & Bennett

We have had a busy week and it looks like that is only going to continue in the land of Bennett.  Here are some things going on in our world:

~ Bennett turned 6 months old!  We praise God for his miraculous life and continued healing.  Bennett also got his 6 month shots which were not a pleasant experience for him nor his mommy.  The near-sleepless night following his shots was not very fun for us either :).

~ Bennett's high blood pressure has been showing much more normal pressures recently and thus we are weaning his medication.....we praise God for that!

~ Bennett's reflux has also improved recently so we are weaning that medication as well.  Thank you Lord!!!  It seems that feeding may always be a challenge for us, but Bennett will now sometimes fall asleep drinking his bottle, which NEVER used to happen when the reflux hurt him so bad.  We recently saw a pedicatric G.I. specialist and she encouraged us to feed him whatever he will eat by spoon, so we have moved on from rice cereal to peaches; and hope to introduce pears this week.  Fun times!

~ Bennett has developed a "twitching" associated with his startle reflex and/or central nervous system, so our pediatrician suggested that we see a pediatric neurologist to find out what is going on in his brain.  Since he is at an increased risk for strokes and/or seizures, we are hopping to rule those things out.  We will be meeting with him on Tuesday, so we ask for prayers for that appointment as well as prayers for the upcoming tests that will most likely occur (MRI, EEG, etc).

~ Bennett's motor skills continue to be challenging amidst his developmental delays.  We have had several developmental assessments lately and his cognitive skills, though delayed, are ahead of his lagging motor skills.  Our weekly PT sessions are actively addressing his delays, so we just ask for continued prayers as Bennett develops and we do all we can to assist him along the way.

~ Unfortunately Travis came down with the flu while traveling out of town this week, so we would appreciate prayers for his recovery!  It seems that there is quite an epidemic going on all over the country.  He is staying away until he is well so that Bennett is not exposed to the flu, but obviously we are missing him very much and he is missing his boy even more!

~ And just to keep us on our toes, we were surprised to find out that our car had been towed away one morning this week.......never a dull moment around here!!!

Today was a fun day in our "land of Bennett" - he ate rice cereal for the first time and it was not a total debacle!  His mommy and daddy were expecting the  worst (i.e. the spoon in his mouth causing a complete melt-down with no cereal even getting close to going down this throat).  We were pleasantly surprised that he tolerated a few spoonfuls into his mouth before getting fussy and declaring the eating session OVER.  See the pics for documentation of this glorious event!

When Bennett was first born some dear friends sent us a CD that had some songs that really ministered to us during his 70 day NICU stay.  One song in particular became Bennett's theme song in our minds- "You Never Let Go" by Matt Redman.  We listened to this song every day in the car to and from the hospital.  Another dear friend included this song on an amazing DVD dccumenting Bennett's journey.  I couldn't help but think of this song again today as we were feeding our boy- a true gift and honor for his mommy and daddy.

Even though I walk through the valley of the shadow of death; your perfect love is casting out fear.

And even when I'm caught in the middle of the storms of this life; I won't turn back, I know you are near.

I will fear no evil, for I know my God is with me.  And if my God is with me, whom then shall I fear?  Whom then shall I fear?

Oh no, you never let go through the calm and through the storm; oh no you never let go, in every high and every low; oh no you never let go, Lord you never let go of me.

And I can see a light that is coming for the heart that holds on; a glorious light beyond all compare.

And there will be an end to these troubles, but until that day comes, we'll live to know you here on the earth.

And I will fear no evil, for my God is with me.  And if my God is with me, whom then shall I fear?  Whom then shall I fear?

Oh no, you never let go through the calm and through the storm; oh no you never let go, in every high and every low; oh no you never let go, you keep on loving and you never let go.

Bennett's personality is beginning to emerge, and it's quite entertaining for his parents.  For the most part, Bennett has a fairly "serious" demeanor - he always looks like he's deep in thought or just plain ignoring you!  And then there are his famous "Bennett minutes," when he just falls to pieces over the smallest little thing.  Yesterday, while mommy was rocking him, he softly rubbed/bumped his head against our glider rocking chair (of which is padded), but by the way he reacted to that you would have thought we were pulling his toenails off one by one!  The boy is quite dramatic.  But then, 5 mintues later, he'll start smiling for no apparent reason.  Sometimes he'll just stare off in the distance while we're holding him and patting his back for a burp after a feeding, and then all of a sudden he'll just break out with a wide array of smiles as if he's watching some type of concert or movie that's just totally cracking him up.  Last night, during bathtime (one of the few times during the day when he's completely calm, quiet, and just plain happy), he looked off to his right and just let out a big giggle!  It was a great sound to hear, to say the least. 

Overall, Bennett continues to do well.  His eating over the last few days has been a little better and his reflux seems to have lessened a little, so we are very grateful for both of these things.  While his feedings have increased, his "nappings" have decreased (a few weeks ago the opposite was true - he was eating less but sleeping much better - especially at night).  Bennett will usually sleep a few hours off and on during the night, but during the day he is the King of "power naps" and will only go down for 20-30 minutes a few times a day.  His parents (specifically mommy) are hoping this changes as soon as possible!  Also, last Wednesday (1/23/08) marked Bennett's last day of opium, so that was a huge milestone for him (and us).  It marked the first time in over 5 months that he was not on either morphine or opium (he was on opium to help him cope with his withdrawal from morphine, of which he had extremely high doses of while in the NICU).  We're told it will take his system a while to adjust to this, but so far he seems to be doing well.

Mommy continues to do a stellar job of caring for Bennett, and of course the two have developed a very special bond.  Whenever he's going "ballistic," there's one place that will calm him the best, and that's in his mommy's arms.  His PT also continues, and he has 2 official sessions each week with our Physical Therapist.  His high blood pressure (of which he's on medication for) seems to be moderating overall, yet there are times that it will spike back up high, so we'd greatly appreciate your prayers for this.        

I think that's about it for now.  Please continue to keep Bennett in your prayers.  Specifically, please continue to pray for his reflux and feedings, for his blood pressure, and for the protection of his lungs from any major (or minor for that matter) lung sickness.  (Also, please throw in a quick prayer for more sleep for Bennett ;) 

We thank you all for your love and support.  It has and continues to be an enormous source of strength for all of us.  May God bless you.

Love,

Travis, Kelly, and Bennett

Today Bennett got to spend the day with his daddy while I (Kelly) went out to lunch with a friend.  I came home to two happy campers who had spent the day hanging out, singing, eating, napping and just chilling.......I think they both thouroughly enjoyed their day of "boys only."

Last week Bennett saw the eye doctor and thankfully got a clean bill of health.  Since he had so much oxygen support while in the NICU there were risks of blindness, but the doctor said that he did not see anything abnormal.  Bennett does look cross-eyed at times but the doctor said that his muscle control should eventually correct itself, so we will go back in three months for a check-up.  We are so thankful to God that Bennett's vision appears to be great!

We continue to ask for prayers for Bennett's feedings and weight gain.  He is quite sporadic as we are either dealing with reflux or constipation from the reflux medicine; both of which make him not want to eat very much.  There are good eating days and not-so-good eating days, so we are just trying to be patient and trust that he will get the nutrients that he needs.  He is quite the stubborn one (we are not quite sure where he gets that from...), so if he does not want to eat, he DOES NOT.  But we really need him to eat and eat so that his lungs can heal and so his brain can grow.

We just wanted to do a quick update......have a great weekend and God bless!

Love,

Kelly, Travis & Bennett

Happy 2008 to all our family, friends, and prayer warriors!!!

We had a wonderful two weeks in Tennessee, have returned home, and are getting Bennett settled back into his routine.  He did great on the 10 hour ride home (sleeping pretty much the first half of the trip), so we were pleasantly surprised and enjoyed the gorgeous scenery of the rolling hills of Tennessee and Virginia along the way.

We continue to be incredibly grateful for all the prayers, encouragement and support that we are receiving along this journey.  Thank you for walking with us and continuing to hold us up.  We have been asked several questions about Bennett's current status, so we thought we would do a quick update about our little almost-five-month-old miracle boy.

#1 - Bennett's lung infection was resolved in the hospital after three weeks of anti-biotics.  Since the infection/pneumonia was so strong and destructive in his young lungs, he is diagnosed with Chronic Lung Disease.  We are told that his lungs will eventually heal as new lung tissue continues to develop for the first several years of a child's life, so we are extremely grateful for that.  Since his lungs are still currently healing, he is at a greater risk of having a common cold (RSV) turn into something very serious, so that is why we are keeping him home as much as possible until flu season is over. 

#2 - Bennett also had two masses of infection that nestled in between the outside of his lungs and rib cages on both the right and left side, but the right side was worse.  Thankfully those infections cleared up in the hospital as well with the help of the two chest tubes (that were inserted while on ECMO) and the three weeks of anti-biotics.  Scar tissue most likely exists as a result of the infections, but we are unaware of any complications as of now.

#3 - When Bennett was put on ECMO and the two cannulas were inserted into his neck, the nerve leading to his right diaphragm was damaged and his right diaphragm is currently paralyzed.  An ultrasounds showed that there is slight movement of the diaphragm so the nerve is not completely dead, but there is very little movement.  We have been told that there is a chance that it will be able to re-gain movement over time, so that is our constant prayer at this point.  His breathing does not appear to be affected by the paralysis right now, but we do not know what future implications are at this point.

#4 - While intubated on ECMO with the chest tubes in place and while on the CPAP, Bennett was on extremely high levels of pain medication (Morphine) and sedation (Verset).  Once he was put on the nasal cannula his pain medication began to be weaned, but this has intentionally been a slow process because the doctors did not want to throw a shock to his system.  We are close to being completely weaned from the pain medication and we are hoping that this will help improve Bennett's irritability that causes those famous Bennett Minutes......we can hope, right :)?!?! 

#5 - Bennett has had high blood pressure since coming off ECMO.  We suppose it makes sense that his body is still a little confused as to why a machine was doing the work of his heart and lungs for sixteen days.  We are told that this should come back down to normal levels at some point, but until then he is on medication to keep his blood pressure at reasonable levels.  Yes, our four month old is taking the same medication that a lot of 60-70 year old men take for their high blood pressure, but such is life :).

#6 - Bennett's reflux has been quite challenging, to say the least.  When we first brought him home from the hospital he would suck his bottle 2-3 times and then start screaming in pain.  Thankfully the medication seems to be working better now and his feedings have improved, although they are still at times sporadic.  We praise God that he has continued to gain weight while off the feeding tube, which has also helped improve his reflux by being off of that.  We still pray daily that his reflux will subside and that his appetite will grow and grow so that he can continue gaining weight.  Gaining weight is always important for babies and it is especially important for Bennett's lungs to heal and brain to grow.

#7 - Bennett's neurological and developmental challenges continue to be the greatest subject of uncertainty.  We know that his tone (the level of stiffness in his arms and legs) is increased as a result of the CP and we know that he likes to arch back his neck and head as a result of his reflux, initial breathing difficulty, and possibly the CP.  We are doing all that we can to jump into early intervention with PT (and eventually OT and speech therapy) and are very pleased with his progress so far.  We are told that Bennett is developmentally about a 2-3 month since his tricks include tummy time, dropping his shoulder when on his tummy and rolling onto his back, smiling more and more, "talking" (a.k.a. cooing) when in the mood to carry on conversation :), swinging his arms at his mobile and kicking those little legs like crazy, blowing bubbles, and he has just started sucking on his hands a bit. It is definitely difficult absorbing the uncertainty of not knowing what the future is going to hold for Bennett developmentally; but at the same time, he continues to amaze us with how far he has come and we strongly believe that God is not finished working in mighty ways in the life of our Bennett.

We hope to take some more pictures this weekend, so hopefully those will be posted soon.  He continues to amaze us with his strength and his fiestiness cracks us up (and even causes his mommy some tears at times too).  Thank you for your prayers for Bennett and his parents.....please keep them coming :).  It is remarkable how embraced by God we have felt and also remarkable the vessels and angels He has placed in our lives during these past five months.  We could tell you story after story of God's provision over us through the lives of people on this earth, so perhaps that will be another post sometime soon.  Once again, thank you so much for caring about our angel boy and for walking with us in this journey.

Love,

Kelly, Travis & Bennett