It has been a wild week......mostly because Mr. Bennett has decided he wants nothing to do with the bottle, but is not ready to transition to the sippy cup or straw cup yet.  As a result we have been to the pediatrician's office twice this week to make sure he is hydrated enough and they have said to keep doing what we are doing......which includes lots of soupy baby food (applesauce, pears and even formula via spoon).  The pediatrician said that it appears that his reflux has flared back up pretty badly, which therefore has made drinking from a bottle a negative experience for him; thus he has decided to let go of it COLD TURKEY (we have been off reflux meds for 4-5 months).

To be honest, it has probably been one of our more stressful weeks since he came home from the hospital.  This is because hydration is obviously a very serious deal.  Plus, when he does not drink his bottle at night he does not get his seizure medicine (it is put in the bottle to drink since it is such a large amount), which can then cause his seizures to wake him up in the night.  Bennett has been sleeping through the night great for the past 2-3 months, so we are hoping to do all we can to sustain this and not back-track.

Obviously we have a LOT to be thankful for and this too shall pass.  Last year at this time we were not sure if he would ever breathe on his own, so thankfully there are ways to feed him (NG or G tube) if he decides to never drink a bottle again (worst case scenario).  We are hoping the reflux meds will kick in soon and that with the help of a great speech therapist we can get him drinking again; but we are not against a feeding tube for the temporary time-being.  Life is pretty insane when the majority of his waking hours are spent sitting in the high chair being spoon fed liquids (!).  We always knew Bennett was strong-willed and stubborn (a trait that he gets from both his parents, so it's a double whammy), but we have seen it rise to a new level when he clamps those jaws shut and just refuses to let that bottle nipple in his mouth....what a monkey.

All that to say, any and all prayers on our behalf are much appreciated during this pretty stressful time.  We will meet with our GI doctor next week to persue options, so we will keep you posted.

After several long months of anticipation and BUCKETS of drool, we finally have seen the break-throughs of Bennett's front teeth!  His top left one is totally broken through and the top right tooth has partially broken through, so hip hip hooray!  The best part about it is that the boy has been a happy little delight through it all....nothing like those miserable two bottom teeth were for him back in the winter.  Popper and Uncle Ash recently told us that seizure medications will usually thicken one's gums, so this makes sense why it has taken so long for those top teeth to make their appearance.  Nonetheless, we are thankful that they are here....now only about another 20 to go.

We are celebrating Bennett's first birthday this weekend at our local farm, so we will be sure to upload pics and stories soon after that.

Happy Labor Day weekend (and the official start of college football) to you!   

Dear Son, Happy 1st Birthday. 

These are words we've been waiting to utter all year long, and now the wait is over.  I write this as you are lying on the floor playing with mommy, with the 2008 Summer Olympics on TV (I can’t wait to tell you about this guy named Michael Phelps), and I realize that it is moments like this very one we’re now enjoying that make your mommy and me feel like the happiest people on earth, for it is a moment like this that at one point a year ago was not a guarantee. 

What a year it has been.  One year ago today you were born at Sibley Memorial Hospital in Washington, D.C., and soon afterward were transported to Georgetown University Hospital where you spent the next 70 days.  You were very, very sick, and at one point you even earned the title of "sickest baby in the Georgetown NICU."  You may want to brag about this one day to your friends, and one day we may even allow you to, but at the time we first heard this it was nothing to brag about.  

After a nearly flawless pregnancy, you were somehow born with a terrible lung infection that today we still don't know the exact cause or explanation for.  Because of the severity of the infection, you underwent an extremely rare and incredible life-saving procedure known as ECMO.  You don’t realize this now, but your first puppy will be named “ECMO” in honor of this procedure.  Sorry, you don’t have a say on this one, buddy. 

Over the next 70 days, words and phrases like ECMO, cannula, CPAP, flow levels, intubated, extubated, “urine” output, oxygen levels, tightrope, chest tubes, blood transfusions, platelets, clotting, x-rays, MRIs, morphine, etc… dominated our language.  The care you (and mommy and daddy) received at Georgetown was unbelievable, and we remain forever grateful to this wonderful team of doctors, nurses, and respiratory therapists who took such incredible and loving care of you.  Your wardrobe will always have something “Hoya” hanging in it.

Because of loving family and friends, and because of this website alongside another website and countless blogs, your plight spread like wildfire and you were immediately immersed in such a volume of prayer that continually guided and protected you day after day, procedure after procedure.  Your mommy and daddy remain forever grateful to the love, strength and support we all received from so many.  From day one, you have always pointed to The One Who saved you.  On numerous occasions in the NICU, the phrase “there is no other explanation for it” would be uttered by doctors, nurses, family, and friends.  Your life will always be a living testimony to the power of God and we will tell you that each and every day so that neither you, nor your mommy or daddy, ever forget God’s power, love and mercy.  We pray that your life will always be a reminder to our family and this world that God is lovingly near and active through his Son, Jesus Christ our Lord.

Bennett, you are such a joy, and we love you.  We give thanks and praise to God for you, moment by moment.

Happy Birthday.

Love,

Mommy and Daddy

Greetings from Tennessee! Bennett did awesome on his first plane ride~ check out the pics for a play by play.

We will be here for the next few weeks, so we hope to update with pics and stories along the way. We hope that your summer is going great!!!

Bennett's Botox procedure went great- thank you for ALL the prayers lifted up for our sweet baby!  He was up with the chickens this morning and watched the sun rise as we headed east on 66 into the city.  Everything went off without a hitch and he is currently snoozing away in his bed at home.  His daddy walked him back to the O.R. and Trav watched him "go to sleep" with a gas mask placed on his face.  He got injections into both eyes (the left inner muscles are tighter than the right inner eye muscles, but both are tight and in need of some loosening) and then he awoke with a vengeance in recovery :).

Bennett was very happy to leave recovery and then made a stop up at the NICU to see all his friends up there.  He really enjoyed seeing nurse Adele, Cheryl, Courtney, Jessica, Emily, and Nora and missed seeing Marianne, Ashley, Kristen, Judy and all the other wonderful nurses who took care of him.  They were surprised at how big he had gotten, and definitely recognized the vintage Bennett wail that he expressed when he was ready to go home....

We are laying low the rest of the week.  It will take a few days for the Botox to take full effect, so we will go back for a follow-up appt. next week with our doc.  The Botox wears off after 2-3 months, so we will most likely be doing these procedures several times a year until he is ready for eye surgery at age 3 or 4.  Of course we are praying that the Botox procedures fix his alignment issues and surgery is not needed (which does occasionally happen with some kids, per our doc).

Bennett is so blessed to have so many family members and friends who love him, cheer on the sidelines for him, and pray for him.  THANK YOU.

UPDATE: We had Bennett's eye doctor follow up and he was very pleased with how Bennett's eyes were doing post-Botox.  His left lid is a bit droopy due to the relaxed muscles, but that is temporary and will go away as the Botox wears off.  We are now waiting to see if his eyes "are fixed" or if they are going to pull inward again as the Botox wears off, so we will go back to see the doc in 3 months to re-evaluate.  Thank you for ALL the prayers and support!

We are less than a week away from Bennett's eye procedure where Botox will be inserted into his left inner eye muscle.  He will be put under general anesthesia for a few minutes so that he is completely still during the procedure.  He had a pre-op appointment yesterday with our pediatrician and she said he was "cleared for surgery", so all systems are GO.

The eye doctor has told us that this is really a procedure to buy time before having eye surgery to correct his left eye's tendency to creep inwards.  He said that no doctor here, at Johns Hopkins, or Harvard would want to do eye surgery on someone as young as Bennett, so the Botox will keep those left eye outer eye muscles working hard, in hopes of keeping them strong.  He has had ONE case where the Botox treatment solved the baby's cross-eyed problem, so we are praying that Bennett is his SECOND case.  Please join us in that prayer so that we can avoid an eventual eye surgery.

We are still patching his right eye daily to give his left eye a chance to get more use, and that will most likely continue indefinitely.  He does not like the patch, so we have NO idea how he is going to respond to life post-Botox.  Please pray that he is free from discomfort and agitation!

We will post more on surgery day, but until then thank you for your prayers and love for our boy!!!  He is giggling away as I write this, so I better go grab him and get him some lunch :).

Today Bennett had his first trip to the local farm and he seemed to enjoy the new sights, sounds, and smells :).  We plan to make many more trips there this summer because there is a local farm market there (with fresh produce and fruit) once a week and we think daddy will really really enjoy going with us too on his days off.

Thank you for all the prayers and encouragement about Bennett's eating.  He has made some improvements over the past week and continue to feel God's presence in both the highs and lows.  We were given the "go" by our pediatrician to try baby yogurt, but he seemed to have an allergic reaction (red bumps on his face and wheezing) to his first taste this week, so we will be staying away from dairy for a while.  Bummer!

Other than that, summer life is good in the world of Bennett.  We have yet to have our first pool experience, but we plan to do that this weekend.  Bennett has been practicing sitting up in the bathtub (and not just lounging back in his bath throne!), so we hope it will be good practice for his upcoming fun dips in the baby pool.

Bennett is loving his exersaucer and wants to be jumping and/or running and standing in your lap at all times.  Sitting is just too boring for him these days, but since we have not fully mastered the art of independent sitting, we continue to work on it when he feels like cooperating......Mr. Personality definitely lets us know what he likes and dislikes!

It took about 10 days to get over his cold, but thankfully it looks like the worst is behind us.  He did end up running a low fever for most of the time while his body was fighting the virus.  We went to the dr. three times over those 10 days and thankfully she was pleased with his progress on Monday of this week.  She was so pleased that he was able to get his 9 month shots.....not fun for the sweet boy!  He has been cranky ever since, so we are dealing :).

Unfortunately as a result of his cold, teething, and growing awareness, Bennett wants little to do with his bottle right now.  This is somewhat making his mommy crazy, but we are doing our best to keep feeding him as much as he will take by spoon (baby chicken, guacamole, sweet potatoes, you name it!) and are also giving him Pedialyte via medicine dropper to keep him fully hydrated.  He is still at the point where he gets the majority of his calories from his bottle (even though he is doing three meals a day of baby food), so that is why we need him to drink that bottle!  Right now the only time he will drink is when he is too tired to fight me and just gives in.....once again, we are in survival mode and just doing whatever works.

We do request prayers for Bennett's eating right now.  It seems like we had made several steps forward, but are now dealing with several steps back.  We were quite used to set-backs in the NICU, but it is definitely hard when the set-back comes so unexpectedly.

We are still planning for his Botox injection in his inner eye muscle on July 1st.  Until then we will just be continuing on with our PT and OT.  His seizures are still occurring, although maybe slightly less frequent, so we will meet with our neurologist on Monday to talk "big picture" and see if we want to try a new med.

Never a dull moment around here.  We definitely want to be thankful in all things and give God all glory for where Bennett is today.  Some days are harder than others, but there is no question that our hearts are full of thanksgiving and boundless love for the tiny tiger.