We have had a wonderful day - please see the photos for pics of Bennett off CPAP and enjoying some time with Grammie and Daddy.

We have so much to be thankful for today.  Bennett is off the CPAP and loving life on the nasal cannula.  His blood gases were drawn tonight at 8 pm and they were at the best levels EVER - praise God!  They are not going to do a lung x-ray at this point because all signs show that his lungs are liking the nasal cannula. 

We really feel like we are in a constant state of thanksgiving today.  We were just talking about the Bible story of Noah and the ark......it rained for 40 days and 40 nights and then the rain stopped.  We can't help but notice that today is day 41 of our journey and it has been an awesome day of sunshine, continued miracles, healing, and renewal.

We will post more updates tomorrow, but for now we just stop once more to say thank you for ALL your prayers for our son, thank you for all the words of encouragement, and thank you for your faith.

Love,

Kelly, Travis & Bennett

Bennett had a good night and continues to "survive" the CPAP.  He had one "Bennett minute" spell this morning that required him to get some "happy juice."  Bennett went most of the day yesterday without needing much sedation, so that was really encouraging.

Here is a funny story~ last night we ended up staying at the hospital pretty late because Bennett had been pretty agitated around 8 pm.  After finally getting him settled down while holding and singing nonstop to him, he then decided to be wide awake for quite a while so Travis and I were soaking up every minute of those big blue eyes.  Wherever Travis went, Bennett followed him with his eyes - it was precious.  He eventually fell asleep (Bennett, not Travis; although daddy was SO TIRED and was tempted to go to sleep on the floor), so while he was sacked out our nurse took a blood gas (that was good) and then the 3 of us attempted to give Bennett a sponge bath.  To make a long story short, we somehow got the boy undressed and plopped up onto the scale that they lay the babies on each night to weigh and bathe them.  Bennett was then awake and looking at us like we were crazy, but he decided to trust us and just "go with it."  Our nurse was in charge of the soap cloth, I was in charge of the rinse cloth, and Travis was in charge of the dry cloth.  We literally said "On your mark, get set, go!" because we all know how much Bennett dislikes being wiped with any form of wet cloths.  As we were busily scrubbing away the boy was looking up at us with a highly puzzled look on his face, as to say "What the heck is going on here?  I feel like I am going through a brush-free car wash, people!"  The 3 of us then got the giggles and quickly finished up as he got more and more hacked.  Thankfully nurse Adele finished up the bath with an awesome lotion massage on Bennett's skinny, long, white legs and he really seemed to enjoy that.  Once he was all clean and settled in his bed he was able to drift to sleep and mommy and daddy sleepily stumbled out the door.

Thank you so much for your prayers for Bennett's complete healing and our meeting with the pediatric neurologist today.  We will post more details later tonight.  Regardless of what takes place in the meeting today we know that God is sovereign and that Bennett will be the person that God intends for him to be.....and it doesn't really matter what the doctor says because we really don't think we could love and adore Bennett any more than we already do. 

Love,

Kelly, Travis & Bennett

Friends and family, from the bottom of our hearts we want to say thank you for your prayers for Bennett, and for your prayers for us during our meeting.  We needed them, and we felt them.

Respiratory-wise, Bennett is doing ok today.  He is fine right now and resting much more peacefully than a couple of hours ago.  When we got to the hospital he was having a "moment" and his readings were pretty bad.  Essentially he was having a bronchial spasm (kind of like an asthma attack), and as a result he just wasn't getting the oxygen he needed.  SO, there was a lot of action around Bennett when we first arrived, but they were eventually able to settle him down and he currently remains on CPAP.  Their goal is to do whatever it takes to not have to intubate him again.

Our meeting with the pediatric neurologist was heavy, but necessary.  We were reminded that all readings and examinations are preliminary, and that it will most likely take months (and maybe years) to fully realize exactly what challenges he will face. 

With that said, the doctors shared several concerns with us as potential problems.  The neurologist examined Bennett earlier this morning, and he found increased tone (stiffness, etc) on the left side of his body.  I share this potential diagnosis with you cautiously, because that's how it was presented to us.  But at the same time, because it was shared with us, we want to share it with you.  Because of the initial trauma to Bennett and because of the lack of oxygen to his brain, areas of tissue in his brain have most likely been permanently damaged.  From the readings of the MRI and the examination of Bennett himself, the neurologist believes that Bennett will likely have some degree of cerebral palsy (CP).  There are many degrees of severity of CP, and the neurologist stressed that at this point there is just no way to tell how severe (if severe at all) it will be.  But he will most likely have some form of CP that the staff has already assured us will be aggressively treated with intense occupational and physical therapy.  The sooner Bennett can breath on his own, the sooner this therapy can begin.

His cognitive functioning, at this point, looks "ok."  Again, it will take several months or years to fully realize how significant it is.  The neurologist did say that the EEG revealed no seizure activity, but that Bennett is unfortunately at an increased risk for seizures during his lifetime.  No other MRIs or EEGs are planned at this point.

Your comments on Bennett's website are always so encouraging and moving, but today they have been even more so.  We just cannot thank you enough for your love and support.  Last night our nurse told us something that really helped us in how we view this.  She said, "remember that Bennett is going to be exactly who God wants him to be."  So simple, so profound, and so true. 

We praise God for giving us our precious boy, Bennett Mitchell.  God has saved him on numerous occasions, and we are so thankful for all of the many precious moments together He has already blessed us with.  We believe and know that He will make our son exactly who he is supposed to be.  To God be the glory, great things He hath done.

We love you all, and we ask that you continue to lift Bennett up in prayer.  Please continue to pray for his lungs, for his right diaphragm (which is most likely paralyzed temporarily), and for his neurological functions.

If we have more information to share this evening we will post again.  Otherwise, we wish you all a happy weekend, and we'll see you in the morning.

Love,

Travis, Kelly, and Bennett 

Bennett had a good night on CPAP.  His blood gases (CO2 & O2) have continued to remain steady, so we are VERY thankful for this.  Since he is so easily agitated on CPAP he continues to be regularly sedated, so we are all hoping that he is able to transition off CPAP onto the high-flow nasal canula as soon as possible.

Thank you for your prayers for our angel boy - he continues to keep fighting hard for us!  We will post more details later today.

Love,
Kelly, Travis & Bennett

Hi everyone, Bennett has had a very good day overall.  His "happy juice" has kept him nice and calm for the most part, and his blood gases have been very good all day long.  Kelly was even able to hold him for 2 hours straight this afternoon!  That is a record.  When he's more alert he's quite annoyed with the CPAP still, but as long as we can keep him calm and "distracted" then he seems to do very well.  He has his moments, but overall he is doing about as well as can be expected.  Our prayer remains that he can come off of CPAP as soon as possible.  We still don't know when this will be, but the better he is, the earlier he will come off CPAP.

Tomorrow at noon Kelly and I will be meeting with the pediatric neurologist to review Bennett's MRI and EEG results.  As long as Bennett is on CPAP, the neurologist most likely will not be able to examine Bennett, so our meeting will probably just be a review of these two tests from last week.  I guess it's to be expected, but we're pretty anxious for this meeting.  We know the Lord is great and works wonders all over the world, and we know He has brought Bennett so very far.  We also know He is fully capable of making Bennett's brain "like new," so that remains our prayer and we ask that you please join us in this request.

If there are more updates later tonight we'll be sure to let you know.  Thank you all for your prayers, love and concern.  Bennett is doing well and his little lungs are flapping as hard as they can, so we hope that he can "take flight" very soon.  Three weeks ago at this very hour he was being removed from ECMO while we all waited and watched.  His lungs miraculously held firm that night, and he has been holding strong ever since.  He has come very, very far.

Love,

Travis, Kelly, and Bennett

Last night we got to the hospital around 7:40pm, right during the shift change.  When we got to the NICU waiting room we were washing our hands and Judy, Bennett's nurse that day came out to us and said "can you both please come back here - we have a question to ask you."  She looked very serious, so we both quickly darted back to Bennett's crib where a crowd was gathered.  Judy then said "take a look at Bennett" and when we peeked in his crib the tube was GONE and he was on CPAP!  Everyone was so excited and I think Travis and I were just standing there in shock.

Apparently while the day nurses were exchanging reports with the night nurses (around 7:20 pm) Bennett literally yanked off the adhesives from his face, yanked the tube all the way out of his throat, and they found it all laying on the floor!  The nurses were in total amazement to find this.  Our boy is both strong and FIESTY.

Needless to say, Bennett does not like the CPAP and spent the next 2 hours screaming his head off.........but since the tube has been down his throat for over 5 weeks he has no "voice" yet, so it is still the "silent scream."  Regardless, we just loved seeing that little mouth wail and it is so much easier to give him kisses on his cheeks now that the adhesives are gone.  The CPAP is basically a tube that blows into his nose brief puffs of pressure and oxygen, but Bennett is NOT a fan.  Nurse Beth finally got him settled down with some "happy juice" and his blood gases were good through the night (the CO2 is what they are closely monitoring), so as of 7am this morning he is still extubated.....praise God! 

God continues to answer our prayers in mighty ways.  We asked that the tube be able to come out, and not only did it come out, but it was thrown to the ground!  Please keep praying that Bennett is able to sustain breathing with the CPAP and that his lungs continue to strengthen so that he can get off the CPAP as soon as possible.

We wanted to share this good news with you and thank you for ALL your prayers for the angel boy.  We will be sure to post more later today.

Love,

Kelly, Travis & Bennett

Bennett is still on the CPAP, so we are more than thrilled that he has persevered through his first 24 hours.  The doctors have told us it will be an hour by hour monitoring process to make sure his lungs are able to "fly", otherwise the tube will be re-inserted.  Thankfully his blood gases throughout the day have been good and he has been tolerating the pressure and oxygen assistance through his nose vs. his mouth (with the help of steady doses of "happy juice").

We posted some pics of our precious little guy and you will notice that it looks like his head is bandaged up......that is just a cap on his head that the CPAP is now attached to to ensure that it stays in his nose.  Plus, Bennett now stays swaddled up 24-7 to ensure those fiesty little arms do not yank the CPAP off........the nurses have figured out how sneaky he operates, so they are doing all they can to hedge his plots.

Here is a great explanation of why Bennett (and most all babies on CPAP) get so annoyed by it.  The nurse today was telling me that he basically feels like he has his head out the window while driving 80 miles per hour, but is still expected to be calm, lie still and behave.  Add to that the fact that his throat is probably pretty sore and swollen after having the tube down it for 5+ weeks, and now there is nonstop air-flow running up and down the soreness.  This explation helped give us some insight to Bennett's agitation.....and we would be just as annoyed, if not worse, if we were him!

The pediatric neurologist did not come to examine Bennett today due to all the CPAP activity, so that analysis will most likely be delayed a few days.  The doctors and nurses really want to keep him as calm as possible to adjust to CPAP (our boy does not enjoy change very much :)), so the less poking and proding on him, the better.  The pediatric neurologist will (or has already) read the MRI and EEG results, so we were hoping to be able to sit down with him this week but it may end up being early next week. 

Right now Bennett's respiratory progress is our top priority and he is doing fantastic so far - no doubt a result of the MANY prayers being lifted up on his behalf.  Please continue to pray that his lungs will heal completely and strengthen so that he can be transitioned off the CPAP onto the nasal canulas, for protection from any/all infection, for his right diaphragm, for complete healing of the "areas of concern" in his brain, and for no complications when he eventually starts to learn to drink from a bottle.

We continue to be blown away by Bennett's strength, the prayers and encouragement by you - our dear friends and family, and most of all by God's love, mercy, comfort, and healing.

Love,

Kelly, Travis & Bennett

Good morning, everyone.  This will be just a brief update, so please see Kelly's update from last night for specific requests to be in prayer about. 

I checked with the nurse this morning and Bennett is currently doing well and is sleeping peacefully.  He had a couple of "Bennett minutes" last night and evidently became very agitated at one point, so they had to give him different medications (as well as turn his oxygen and ventilator pressure settings up) to calm him down.  But as of now, he is calm and sleeping soundly, and his latest blood gas was very good. 

We'll plan to post again once we hear more from the doctors later this morning. 

Thank you all for your love, encouragement, and prayers for our boy. 

Have a great day.

Love,

Travis, Kelly, and Bennett