We wanted to do a quick update to send out our warmest wishes to everyone as Christmas Day approaches and we celebrate Christ's birth.  This year our hearts are especially full of thanksgiving and joy for the gift that we get to hold in our arms every day and we know that our gift of Bennett's life is a direct result of Christ's love, sacrifice and life.

After a two day road-trip from VA to TN we arrived at Grana and Popper's house and we are happy to report that Bennett did remarkably well on the trip.  We were preparing for the worst (10-12 hours of screaming) and were pleasantly surprised that there was only 2-3 hours of screaming, some sleeping, and some quiet/happy/awake time.  Our boy never ceases to amaze us.

We are now settling in at Grana and Popper's house and enjoying time with the Tennessee family.  Bennett is very excited to meet his great-grandparents (Nana and Gran), to meet his two adorable cousins Lainey Hope and Palmer, and visit with his aunts and uncles.

We wish you all a very Merry Christmas and once again cannot thank you enough for all your prayers, love and encouragement during these past four months.  Bennett has truly come so far and we are forever grateful.

Love,

Kelly, Travis, and Bennett

Bennett continues to do well and seems to be enjoying life in the suburbs very much.  His eating and sleeping continues to improve and his "Bennett minutes" are a bit less frequent......but he definitely can still scream and turn bright red/purple with the best of them - especially when riding in his carseat.  He screams as if we are yanking off each one of his toenails one by one each time we put him in the carseat, so Dr. appointments are quite the adventure lately.  Thankfully he very much enjoys being entertained by daddy with an orange basketball rattle, so it is precious to watch his face light up when Trav pulls it out.  We're not sure if it's the color orange or basketball aspect that he loves so much, but either way he is definitely his father's son.

We had two doctor appointments this week- one with a Nephrologist (a kidney specialist who oversees Bennett's high blood pressure) and the other with the NICU follow-up clinic - and both went very well.  The Nephrologist was pleased with Bennett's blood pressure readings at home (taken by our home nurse, sister Ann) and would like to start weaning his blood pressure medicine, so that is a huge praise.  We now have a loaner blood pressure machine so that we can take his blood pressure twice a day to ensure that it stays within an acceptable range.  Yes, both Travis and I feel like we are ready to head to nursing school :).  Our NICU follow-up went well too and we continue to wean Bennett's morphine withdrawal meds, are weaning his diaretic for any fluid still in his lungs, and are weaning his breathing treatments - these are all positives and we are praising God for His healing powers.  According to our Dr. his lungs sound "great" and we PRAISE GOD for those words - 16 weeks ago that was far from our reality.  Bennett's reflux continues, which was expected, so those meds will stay in place for a while.  He is also still needing to gain more weight, so we do ask for continued prayers that his reflux will dissipate and his appetite will continue to grow and grow. 

The other prayer requests we have are for a couple of Bennett's former NICU roommates.  Brady has developed a serious infection and had been readmitted to Georgetown, and Peter has developed a serious problem with his liver and is undergoing a lot of tests.  We ask for prayers for these two precious baby boys, for their healing, and for their parents and families as they endure another round of care in the hospital. 

The developments with Brady and Peter have reminded us, yet again, of how fortunate and blessed we are that Bennett is where he is today.  At the same time, it's also reminded us of just how quickly things can change with a little one who has recently been very sick, and how easily and quickly they can become seriously ill again.  As always, we appreciate your prayers and ask that they continue.   

We would also like to ask for prayers for our dear friend Bob who is a father of five young children and husband to an amazing wife Tresa.  He is fighting an intense battle with Myeloma and we are begging God for His complete healing of Bob's body and strength and comfort for Bob's precious family.

We found out great news that Bennett's NICU buddy Logan should be going home next week in time for Christmas, so we are thrilled for him and his family.  Logan is another little miracle and was Bennett's first roomie in the NICU before Peter came and took his "spot" next to Bennett.

Bennett is smiling more and more these days, which just melts our hearts.  We don't remember what life was like without him (quite boring, that's for sure) and thank God every day for the miracles He has performed and continues to perform.  We know that He is not finished working in the life of our angel boy.

Love,

Kelly, Travis & Bennett

Well, thanks to so much help from several friends and family, our move to Herndon (outside Fairfax) went very well and we are just getting settled in.  Bennett now has his own little room all to himself, and we think he's already really enjoying it.  He seems very peaceful and calm for the most part (easy for me to say, huh?  I'm not the one home with him 24/7!!), but he still has that "wonderful" few hours in a row every night around the same time when he's pretty much inconsolable.  For the parents out there, please tell us that this is normal!  Other than this, though, it seems like our boy is doing well and we think he is slowly becoming a little more of a "happy" boy.

Bennett and mommy had a PT appointment scheduled for today, but it had to be cancelled because of our first snowfall of the season.  Not to worry though, for mommy's daily PT camp is about as good as anything he gets from professionals.  While areas of stiffness in his legs, arms, neck and back remain, there are also areas that seem more relaxed than just a few weeks ago.  We are so thankful for this and pray that this trend continues. 

Feeding wise, the tube is still out and we think he's eating well!  He's still a little sporadic in his feeding amounts, but I would say that the overall trend over the last 10 days or so has been upward.  His reflux remains as well, but it does seem a little better.  One day at a time, one day at a time...

Again, thank you all for your love and prayers for Bennett and for us.  It's truly a joy to have him home with us.  Anytime we think we're about to go crazy because of all of the screaming, we simply think back to those long days/nights in the NICU and all of a sudden those screams aren't so bad.  In fact, they are welcomed!  We love our boy, and we are just so thankful for each moment with him.

Please continue your prayers for his feedings to increase, for his reflux to decrease, and for his morphine withdrawal.  We'll plan to post more pictures (and eventually a video if I ever figure it out) soon.

Love,

Travis, Kelly, and Bennett   

Bennett is doing well and continues to adjust to life at home with mommy and daddy.  A few nights ago he coughed/sneezed his feeding tube out, and we decided not to place it back in (thankfully).  He's not eating as much without the tube, but he does eat more than we thought he would.  His parents are very happy that this tube is out, and we pray that it stays out!

His doctor's appointment went very well yesterday.  They were very pleased with his weight gain (now over 13 pounds) and his overall progress, and as of now they are ok with Bennett not having the feeding tube in.  Also, his tone (stiffness) was much improved (his legs and arms are not as stiff) from a few weeks ago, so we are so thankful for this news.  It was such an encouragement to hear (almost feel) such optimism.  He remains on all of his medications as well as his heart monitor, so these will likely continue for quite some time.  His reflux remains, although it doesn't seem as bad as a couple of weeks ago.  His morphine withdrawal remains as well, but again it just doesn't seem quite as bad as it has been.  We even think we've started to see a few smiles in the last couple of weeks, but we're not ready to label him a "happy baby" just yet.

Bennett loves his walks or brief "outings" with his mommy, and he continues to just love his bathy time.  Sometimes we have to give him several baths a day to keep him happy!  We continue to be amazed by his strength and willingness to get better one day at a time, and we remain extremely grateful that our boy is home with us.

On a much different note we wanted to let you know our time in DC is coming to an end, and we will be moving to northern Virginia this weekend.  Once we are settled we will plan to post more updates as well as some video clips of Bennett's first ride home from the hospital!  (if you'd like our new address, please feel free to email us at speckhome@gmail.com and we'll be happy to send that to you).

Again, thank you all for your love, your concern, your encouragement, your faithfulness, and your prayers to the Father on our behalf.  All "3" of us would not be where we are today without them.

Love,

Travis, Kelly, and Bennett

Bennett is feeding a little better, and his reflux has seemed to decrease some over the last couple of days - this is a huge praise, so thank you for your prayers!  For 3 days in a row now Bennett has eaten over 400 cc's on his own (he was only eating around 200 cc's on his own just a few days ago).  This is exactly the direction we want him to go, because the higher the cc intake on his own, the closer he is to being able to remove the feeding tube for good. 

Bennett's Tennessee Grana and Popper were here over the weekend (Grana was actually here for most of last week helping out), so he thoroughly enjoyed their company and was able to show them exactly what a "Bennett Minute" looks like (Bennett Minutes usually last several hours!).  Whew, that boy sure can holler, but we're not complaining!  Grana was a huge help in getting Bennett to eat more - he was very relaxed and comfy in her arms.  I wish he would eat like that in my arms!! 

Overall, Bennett seems to be doing well and he continues to adjust to life at home.  He's been home for 3 weeks now.  We thank you for your prayers, and we ask that they please continue for his feedings, reflux, morphine withdrawal, and Speck PT camp.  

We wish you all a Happy Thanksgiving.  We definitely know what we'll be most thankful for this year.  Praise the Lord for what He has done for Bennett.  Praise the Lord.

Love,

Travis, Kelly, and Bennett

Well, our little bundle of joy is still at home and we think he is adjusting well.  He's quite a little character, and very stubborn and dramatic.  Kelly and I are constantly looking at the other as if to say, "I wonder where he gets THAT from??"  We love having him home, though, and we think he loves being home.  It was 12 weeks ago today that he first went on ECMO. 

We had another pediatric appointment on Monday, and his first physical therapy appointment on Tuesday.  His pediatric appointment went well - no major changes in his medications or monitors, so those remain the same.  He's on medication for his high blood pressure (a common problem for ECMO babies), reflux, his withdrawal from morphine, and a diuretic to help him "urinate" and continue loosening up items in his chest.  He'll probably be on the reflux, blood pressure, and opium meds for a while, but we're hoping that he can slowly come off one at a time.

His first PT appointment also went well.  We were given new exercises to do, so we're excited to try them out.  His hands seem much more loose and relaxed than just 2 weeks ago, while his right leg is a little stiffer (it has more tone).  Overall, his legs and feet have more stiffness in them than his arms and hands, but the therapist thinks that intense PT will really help.  His neck and lower back have areas of stiffness as well, but we also have some good exercises to use for these areas.  He'll likely have an official PT appointment once a week for the foreseable future, and of course his own Speck family version of PT when he's at home - "Speck PT Camp."

His feedings continue to be very inconsistent, and right now the tube is still in.  He ripped the tube out the other night and so we tried feeding him only from the bottle.  He did well at first, but kind of digressed a little so the tube is officially back in (thanks to Nurse Ann!).  He sneezed several times in a row last night and as a result the tube came out again!  SO, Kelly pushed the tube back in place while I held his body down (he just loved that) and Grana (who just came in from Nashville) put on the tape to keep it in place.  What a scene that was!!    

I think that's about it for now.  Your prayers for his feedings, reflux, blood pressure, and his withdrawal are greatly appreciated.  Again, thank you all for your love and concern for Bennett.  

Love,

Travis, Kelly, and Bennett 

Well, Bennett continues to adjust to life at home.  Grammie has been over this week helping Kelly out, so that's been a big help for us.  Grana comes in from TN next week, so Bennett is getting some good time with both of his grandmothers. 

His apnea clinic appointment on Tuesday went well, and we were reminded yet again just how grateful we should be that Bennett is alive and at home.  The doctor told us that Bennett is truly a miracle, and should be celebrated as such!  Also, the doctor noticed slight improvement in some of his tone (less stiffness in his hands in particular, and in his feet), so this was so encouraging to hear! 

Bennett remains on several medications for his blood pressure and reflux, so no major changes have been made as of now.  His feedings are still pretty inconsistent (he'll eat more on some days and less on others), so the feeding tube remains in at this point.  Please pray that his daytime feedings increase more and more so that his feeding tube can finally be removed, and please pray that his reflux will go away! 

Again, thank you all for your love, encouragement and prayers throughout all of this.  God has been good to us and has brought our son home.  His power and your prayers made that possible.

Love,

Travis, Kelly, and Bennett   

Well, we have thoroughly enjoyed being home together with our boy this week and now weekend.  It is an absolutely gorgeous fall weekend here in DC, so we're planning to get out and go for as many walks as possible.  We truly miss all of the wonderful doctors and nurses at the NICU, but it is definitely nice to not have to drive there every day.  It has been wonderful having him home, and we are just still so thankful. 

His feedings and reflux continue to present the biggest challenges, so your prayers for these are greatly appreciated.  Sometimes the medications help and he is able to eat more during the day, but sometimes they don't.  We have an appointment early next week, so we'll see if we need to use another strategy.   

I'd also like to ask for special prayers for Kelly this upcoming week.  I'll be heading back to work, so she'll be Bennett's full-time nurse/mommy.  With all of the feeding challenges, the heart monitor and leads, and all of the medications (6 different ones as of now) to give throughout the day, it's just a lot to manage.  I know she will appreciate your prayers for her. 

With love to all,

Travis, Kelly, and Bennett