Wednesday, May 25, 2011

2 Weeks Old

We are two weeks old today and praising God for this milestone.  A LOT has happened since our last update.  For one, Henry is off of the oscillator!!  This past Friday they switched Henry from the oscillator, to a regular ventilator and he did great!!  That is such a HUGE praise!  After ten days of not being able to hold my little boy, I was able to finally hold my beautiful son late Friday afternoon.  He is so sweet, just like his sister.  Secondly, Henry was able to be transported to LeBonheur Sunday night.  All weekend I knew the plan was to move Henry to LeBonheur, but I was just sick over the fact that my babies weren't going to be together.  Selfishly, I wanted to be able to spend equal amounts of time with them both, together!  Well, Harper wasn't going to have her brother get all the attention from the big fancy hospital.  Late last week, actually the day after Mark updated the blog, her little tummy issues came back.  The surgeons from LeBonheur came back to the MED to revaluate her and decided to move her to LeBonheur late Monday night.  So now both of our babies are together at LeBonheur.  Mark and I are so happy to have them together, but we are going to miss everyone at the MED.  Those NICU nurses took such good care of our babies, and really, us too!  I was really emotional when we left for the last time.  I guess they were just there, with us, from the beginning.  We formed a bond with them and we are truly grateful for the incredible care they gave our babies.  Luckily, their precious neonatologist, Dr. Joi, will be at LeBonheur in a few weeks, so we will hopefully have her as our doctor again.  But, I will forever have a special place in my heart for The MED!   

Henry had a CT scan on Monday.  We had to wait for surgery to look at the images.  His surgeon came to talk with us this afternoon about the results.  Basically, she said the same thing that all of our doctors have said from the beginning.  We really won't know much until they operate and remove the tumor and we see what we're left with.  The tumor is large and right now it has distended the heart to the point that it has effected the left lung as well and is completely taking up the right lung cavity.  We were told today that Henry would not be making any more improvements until the tumor was removed.  Also, the longer we leave the tube from the ventilator in his trachea, the more at risk he becomes for infection, pneumonia, and possible lung damage.  So, the surgeons have decided that we need to have surgery sooner rather than later.  We are thinking it could possibly be in just a few short weeks.  I will update the blog the minute I find out the date.  

Harper is doing remarkably well.  Because of the distention in her belly, they did a barium enema on her yesterday.  Surgery said they could not see anything to be causing her problems.  So, they are going to start her again on feedings.  We are praying that the third time is the charm.  She has put on a few grams, and her little personality is starting to show again.  She had me very worried this past weekend.  Our little spitfire was just not herself.  If the issues come back after this feeding, the surgeons have ordered an upper GI.  We are praying this doesn't have to happen. 

Once again, Mark and I are so very grateful for your prayers and constant outpour of love for our sweet babies.  I have decided to just carry kleenex with me at all times, because I am constantly being reminded of God's love and mercy through each and every letter, email, facebook message, text, or voicemail I receive.  We are humbled and blessed.  

Much love,

B.J. and Mark


Our First Family Photo



Harper Girl Sound Asleep



snug as a bug in a rug



No pictures, please!!!



Henry, waking up from a nice, long nap



Wednesday, May 18, 2011

1 Week Old

Hello everyone.  This is Mark.  B.J. and I thought we would try something new this week and let me write our post.  This is my first blog post, EVER, so everyone will have to bear with me.

Our babies are one week old today!  We are so happy and thanking God.  About this time last week, B.J. and I weren't sure if we would make it to this small milestone with both our little ones.  But by the grace, mercy, and miraculousness of our Lord and Savior, Henry and Harper are still both with us, and they are putting up quite a fight.  God has shown us so much through these little ones already.  And we have learned so much about ourselves.  We've all heard it before, and many of my friends also stated this fact to me in the past, but it's amazing how much you can love someone the absolute moment that you meet them for the first time.  That's how it was for B.J. and me when we first met Henry and Harper.  They were, and are, the most beautiful things we had ever seen.  And we continue to pray for God's healing and protection over our little ones.  So far, He has come through.  

Henry is still on the oscillating machine that B.J. spoke of last week.  Right after he was born, he had to be put on this machine to keep him alive.  Not only was it serious enough that he was on this machine, but the settings were maxed out and he was on 100% oxygen.  On top of that he was on two different blood pressure meds, as well as being sedated to allow him to rest.  I'm happy to report, that as of this afternoon, he was no longer on any blood pressure meds, no longer being sedated, and the settings on the oscillator had been minimized and he was down to about 42% oxygen.  This does not, by any means, indicate that our little boy is still not very sick and no longer critical.  But it does mean he should be off that machine within in the next couple days, and placed on a conventional ventilator.  If he is able to remain stable on the conventional ventilator and continue to breath efficiently, he will be transferred to LeBonheur where he will remain until he is able to grow big enough and strong enough for surgery.  It also means that hopefully, within the next few days, B.J. and I will finally get to hold our little man in our arms.  We cannot wait!  Although his prognosis is still life threatening, we know that God is the great physician and we praise and thank him for the very small improvements Henry has made daily over the last week.  As one of his doctors said Monday during rounds, "with Henry, slow and steady wins the race". 

Now, to our little spitfire, Harper.  She is doing amazing considering she had IUGR and only weighs 2 lbs, 3 oz.  She has already taken to a pacifier and several times while B.J. and I have held has tried to lift her head up.  But, late last week and through the weekend she did have some abdominal distention that was very concerning to the doctors.  One of them even mentioned the possibility of surgery on her bowels.  As of yesterday the distention had resolved and she was able to start feeding late Tuesday evening.  All of last night and today, Harper has tolerated her feedings well.  And one of the surgeons stated this morning that we were out of the woods, for the time being, as far as surgery was concerned.  We are so grateful that God got her through that little bump in the road.  B.J. and I were so concerned and stressed that her little 2 pound body could not withstand surgery.  But again, God watched over our baby girl.  We are just hoping and praying that she will be able to continue to tolerate her feedings so we can put some meat on this skinny girl's bones.  

We continue to be humbled and blessed by the outpouring of love and prayer support shown to us.  It has definitely sustained B.J. and I through this long journey and we know that it has helped our babies get stronger.  We continually tell them how loved and prayed for they are.  We also give thanks, not only to God for the improvement of Henry and Harper, but also the doctors, and more importantly, the nurses that have cared for them.  The ladies that have treated our two little ones have been absolutely phenomenal and we are so grateful for them.  Please pray for B.J. and I as we continue on this journey and the 'roller coaster' that is having your children hospitalized.  Please pray for me as I try to make the transition back to the working world.  I feel very guilty leaving my sick babies and wife here in Memphis, but I know that God will sustain them daily until I return.  I am going to try to commute back-and-forth, so please pray that I will remain safe on the roads.  Please pray for B.J. as she continues to heal from the surgery.  She wants to be in the NICU as much as possible, but she is also still needing to rest and take time to heal.  Please remember Shirley as well, since she will be spending most of her time up here with B.J. while I am at work (much like she did during B.J.'s hospital stay).  Most importantly, continue to pray for Henry and Harper.  For Henry's minimal lung tissue to continue to strengthen so that he can safely be transported to LeBonheur.  For Harper to continue to tolerate her feedings and start to pack on the pounds.  And for both of them to stay infection free.  We thank you all for your fervent prayer.

God is good... all the time!

Mark, B.J., Henry and Harper

video
**above is a video of Harper sent to us by one of the nurses.  This happened in the middle of the night.  Apparently, she was NOT too happy and decided to turn herself sideways in her incubator and flail aimlessly at the air, as if she wanted to smack someone.  Like I said, spitfire!  This puts a smile on our face and a tear in our eye every time we watch it.  Praise God for that screaming baby!

Sunday, May 15, 2011

Update and Pictures as of 5/15/11

I had planned on what I was going to say when I updated the blog tonight, but then I logged on to our blog and noticed the bible verse for today.  It might have changed already, but it was Ecclesiastes 11:5, "As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things."  This verse really spoke to my heart tonight.  You see, for the last few days, Mark and I both have been asking God, "why?"  I have been so angry at times that this is happening.  This is the hardest thing we have ever gone through.  I get physically sick each and every time I walk into the NICU and see my babies struggling for their lives.  The hardest part is that there is nothing we can do about it.  If we could give our own lungs to Henry, we would.  If we could give up every material thing we had just for Harper to get bigger we would.  We would do anything to make this all better, but we can't.  I may not understand why this is happening, but I know that God has a plan for all of us.  And no matter how high the waters rise, we won't quit trusting that God will see us through.  There is a song by MercyMe that Mark and I sang to the babies a lot before I was admitted to the hospital.  The lyrics talk about being made for so much more than all of this.  How we are sacred, we are treasured, and we are HIS!  We are resting in knowing that God is still in control because we belong to Him.  He created us! 

As far as an update on our sweet babies, not much has changed.  The goal is still to get Henry stable enough to take off of the oscillators so that he can be transported to LaBonheur.  A nurse told us today that it may be more like a few months before Henry is stable enough for surgery, but that he will more than likely have to stay in the NICU until his surgery.  Mark and I are trying to prepare ourselves for being here that long.  Harper is still hanging in there.  She is so sassy and such a little fighter.  The nurses have all laughed at how much she hates being dirty.  If she has a dirty diaper she lets EVERYONE know.  The nurse said she went through 15 diapers just in one shift.  She is still having some distention in her belly, and yesterday there was a scare that she may possibly have to have surgery, but as of late this afternoon, the distention had almost completely reduced.  The surgeons have decided to just monitor her, and see if it comes back after her first feeding, which is scheduled for tomorrow. 

Once again, we just ask that you please keep praying for our babies.  We are so grateful and humbled by all the love and support that has been shown for Henry and Harper.  May God bless each and every one of you for being such strong prayer warriors.  We can assure you that not one prayer has been said in vain.  I've included some pictures tonight so that everyone can see the sweet little faces of the babies they're praying for. 

Much love,

B.J. and Mark




Sweet Henry, only a few hours old



Mommy and Daddy with Harper



 
Kangaroo Care with Harper




Harper with Daddy's wedding band



Daddy loving on Harper



Henry sleeping today

Friday, May 13, 2011

Update on Henry and Harper

UPDATE AS OF THURSDAY NIGHT, MAY 12, 2011
 
DEAR FRIENDS,
MARK AND I JUST WANT TO GIVE AN UPDATE ON OUR SWEET BABIES.  HENRY AND HARPER ARRIVED WEDNESDAY, MAY 11TH.  HENRY WEIGHED 3LBS AND 14OZ AND WAS 18 INCHES LONG.  HARPER WEIGHED 2LBS AND 4OZ AND WAS 15.8 INCHES LONG.  MARK AND I ARE SO GRATEFUL TO GOD FOR THESE LITTLE ANGELS.  WE ARE SO IN LOVE WITH THEM THAT IT HURTS.  
 
HARPER SURPRISED US ALL.  WE WERE TOLD RIGHT BEFORE SURGERY TO NOT GET UPSET, BUT THAT WE WOULD NOT HEAR HER CRY BECAUSE SHE WOULD HAVE TO BE INTUBATED IMMEDIATELY.  MARK AND I HAD PREPARED OURSELVES TO NOT SEE EITHER ONE OF THEM AT FIRST.  WELL, LITTLE MISS HARPER SHOWED OUT WHEN SHE ENTERED THIS WORLD.  SHE CRIED AND WAS ABLE TO BREATH COMPLETELY ON HER OWN.  SHE DEFIED ALL THE DOCTORS.  ONE OF THE RESIDENTS WHO WAS ABLE TO OBSERVE THE SURGERY EVEN BEGAN CRYING.  IT WAS AND IS TRULY MIRACULOUS, AND WE ARE GIVING GOD ALL THE PRAISE AND GLORY! AS OF TONIGHT, OUR HARPER GIRL IS STILL BREATHING ON HER OWN.  THEY DID HAVE TO GIVE HER A FEEDING TUBE BECAUSE OF SOME ABDOMINAL DISTENTION, BUT OTHER THAN THAT, SHE IS GREAT AND CONTINUES TO DEFY ALL ODDS.  I WAS EVEN ABLE TO DO “KANGAROO CARE” WITH HER LATE THIS AFTERNOON.  THAT JUST MEANS I WAS ABLE TO HOLD HER SKIN ON SKIN.  SHE IS JUST PERFECT AND SO TINY SHE ALMOST LOOKS FUNNY KICKING AND STRETCHING.  
 
HENRY IS STILL VERY CRITICAL.  WEDNESDAY MORNING, THE DOCTORS HAD PREPARED US FOR NOT BEING ABLE TO SEE HIM, AS THEY BELIEVED HE WOULD HAVE TO GO IMMEDIATELY TO LABONHEUR.  TWO HOURS AFTER I LEFT THE RECOVERY ROOM POST OPP, ONE OF HIS NEONATOLOGISTS CAME TO SPEAK WITH US IN OUR ROOM.  HE BASICALLY TOLD US THAT HENRY WAS NOT STABLE ENOUGH TO TRANSPORT TO LABONHEUR, AND THAT IN HIS OPINION, WOULD PROBABLY NOT MAKE IT THROUGH THE NIGHT.  OUR DOCTOR WHO DELIVERED THE TWINS WAS ALSO IN THE ROOM WITH US.  HE AND MARK CARRIED ME DOWN TO MEET HENRY FOR THE FIRST AND POSSIBLY LAST TIME. WEDNESDAY AFTERNOON/ NIGHT WAS AWFUL, BUT BY PRAYER AND THE GRACE OF OUR LORD AND SAVIOR, HENRY MADE IT THROUGH THE NIGHT.  HE IS VERY MUCH STILL TOUCH AND GO.  THE MASS IN HIS CHEST WAS A LOT BIGGER THAN ANY OF THE DOCTORS HAD SUSPECTED.  THE MASS IS TAKING UP HIS ENTIRE RIGHT CHEST CAVITY, AND BECAUSE OF ITS SIZE, HAS ALSO DISPLACED THE LEFT LUNG TO THE POINT THAT THE LEFT LUNG HAS NOT BEEN ABLE TO DEVELOP PROPERLY.  SO, IN LAYMAN’S TERMS, UNTIL THEY REMOVE THE TUMOR, HENRY DOES NOT HAVE A RIGHT LUNG, AND MORE THAN LIKELY WON’T HAVE ONE WHEN THEY DO REMOVE THE TUMOR, AND HIS LEFT LUNG WILL NOT INFLATE ON ITS OWN.  THEY SAID HIS LEFT LUNG WAS MORE LIKE A 21-WEEK GESTATION LUNG RATHER THAN 32-WEEKS. IN ORDER FOR HIM TO HAVE SURGERY, THE LEFT LUNG NEEDS TO BE ABLE TO MATURE TO THE POINT THAT THE SURGEONS CAN TAKE HIM OFF THE OSCILLATORS (THIS IS A BREATHING MACHINE THAT IS BREATHING FOR HIM, NOT A VENTILATOR THAT IS ASSISTING HIM) AND TRANSPORT HIM TO LABONHEUR.  EVEN WITH SURGERY, IF HIS LEFT LUNG DOES NOT STABILIZE AND DEVELOP, HE WILL NOT BE ABLE TO SUSTAIN LIFE.  
 
 
WE ARE JUST CONTINUING TO ASK FOR PRAYER FOR OUR SWEET BABIES.  WE ARE PRAYING SPECIFICALLY FOR A MIRACLE FOR HENRY.  IN ORDER FOR HIM TO LIVE, HE IS GOING TO HAVE TO HAVE SURGERY, BUT WE ARE FAR FROM HIM BEING STABLE ENOUGH TO ENDURE SURGERY.  WE ARE ALSO PRAYING THAT HARPER WILL CONTINUE TO IMPROVE, GROW, AND WILL BE ABLE TO FIGHT OFF INFECTION THAT CAN SOMETIMES OCCUR IN SUCH SMALL BABIES.  
 
MARK AND I ARE SO HUMBLED BY THE OUTPOUR OF LOVE AND PRAYER FROM OUR SWEET HOMETOWN AND EVEN FROM PEOPLE THAT WE’VE NEVER MET.  WE ARE LITERALLY BEING CARRIED BY PRAYER.  I WOULD BE LYING IF I DIDN’T SAY THAT THIS IS THE HARDEST THING THAT EITHER ONE OF US HAS EVER GONE THROUGH, BUT WE KNOW THAT GOD IS GOING TO SEE US THROUGH TO THE END.  AS MUCH AS WE LOVE HENRY AND HARPER, WE KNOW THAT GOD LOVES THEM, AND US, SO MUCH MORE.  WE ULTIMATELY ARE PRAYING THAT HIS WILL BE DONE, BUT WE ARE ALSO PRAYING THAT HE WILL GIVE US PEACE FOR WHATEVER THE OUTCOME.  MUCH LIKE THE PAST 5 WEEKS, THIS SITUATION IS VERY FLUID AND CHANGES DAILY.  WE WILL TRY AND UPDATE THE BLOG AS OFTEN AS WE CAN.  WE TRULY CANNOT EXPRESS HOW MUCH WE APPRECIATE AND COVET YOUR PRAYERS.  HENRY AND HARPER ARE SO LOVED AND THAT MEANS THE WORLD TO US.  MARK AND I FEEL TERRIBLE THAT WE CAN’T TALK WITH EACH AND EVERY PERSON WHO CALLS, TEXTS, OR EMAILS, BUT PLEASE JUST KNOW THAT WE ARE SO GRATEFUL FOR YOUR CONCERN.  
 
MUCH LOVE,
B.J. AND MARK

Saturday, May 7, 2011

31 Weeks

​WELL, ONCE AGAIN GOD HAS BLESSED US WITH ONE MORE WEEK.  I AM 31 WEEKS AND 3 DAYS TODAY.  I’M LATE DOING MY WEEKLY UPDATE BECAUSE WE HAVE BEEN GOING BACK AND FORTH WITH A GAME PLAN FOR WEEK 32.  IN MY LAST POST I MENTIONED THAT THE DOCTORS HAD DECIDED NOT TO ALLOW THE PREGNANCY TO GO ANY FURTHER THAN 32 WEEKS.  THAT IS STILL TENTATIVELY THE PLAN.  THERE ARE SEVERAL SCHOOLS OF THOUGHT ON WHAT TO DO WITH AND WHEN TO DELIVER A BABY WITH IUGR.  MOST DOCTORS WOULD HAVE ALREADY DELIVERED HARPER WEEKS AGO BASED ON HER GROWTH AND THE RESTRICTED BLOOD FLOW (NO DIASTOLIC FLOW THROUGH THE CORD).  ON THE FLIP SIDE, I AM PREGNANT WITH TWINS AND ITS SCARY TO DELIVER TOO EARLY BECAUSE THE LONGER HENRY HAS TO GROW, THE BETTER HIS CHANCES ARE AT SURVIVING SURGERY.  SO, I’M SAYING ALL OF THIS TO TELL YOU THAT WE STILL DO NOT HAVE A “DEFINITE” DATE FOR DELIVERY.  WE DO HAVE A PLAN AND IT’S AS FOLLOWS: I STARTED MY SECOND ROUND OF CORTICOSTEROIDS TODAY.  I WILL NOT HAVE ANYTHING TO EAT OR DRINK AFTER MIDNIGHT TUESDAY.  ON WEDNESDAY MORNING, MAY 11TH, I WILL GO FOR MY DAILY DOPPLER ULTRASOUND.  IF HARPER HAS NOT SHOWN “SIGNIFICANT” GROWTH, AND WHEN WE SAY SIGNIFICANT, THEY WANT TO SEE AT LEAST AN INCREASE OF 400-500 GRAMS OVER THE LAST 2 WEEKS, I WILL GO STRAIGHT INTO SURGERY AND WE WILL DELIVER THAT MORNING.  IF, BY THE GRACE OF GOD, SHE HAS SHOWN “SIGNIFICANT” GROWTH, THEN WE WILL CANCEL SURGERY AND TRY AND PUSH FOR DELIVERY AT 34 WEEKS.  
 
​WE ARE ASKING THAT ON WEDNESDAY EVERYONE PLEASE BE IN PRAYER FOR HENRY AND HARPER.  WE ARE TRULY PRAYING FOR GOD’S WILL TO BE DONE, AND FOR HIM TO FILL OUR HEARTS WITH PEACE FOR WHATEVER THE OUTCOME.  IF THEY ARE DELIVERED THAT DAY AND ARE ABLE TO BE STABILIZED, THEY ARE BOTH IN FOR THE FIGHT OF THEIR LIVES.  MARK AND I WOULD BE GRATEFUL TO ANY AND ALL PRAYER CHAINS AND PRAYER CIRCLES WHO WILL ADD OUR BABIES NAMES TO THEIR LISTS.  WE BELIEVE IN THE POWER OF PRAYER, AND WE KNOW THAT WE CAN’T GET “TOO MUCH!”
 
​WE’VE BEEN TOLD THAT WHENEVER THEY ARE BORN, IT IS MORE THAN LIKELY THAT HENRY WILL BE TAKEN TO LEBOHEUR’S NICU, AND HARPER WILL REMAIN AT THE NICU HERE AT THE MED.  MARK AND I CAN’T BE IN TWO PLACES AT ONCE, AND I WILL BE RECOVERING FROM SURGERY, SO WE JUST ASK THAT YOU PRAY FOR US AS WE TRY AND FIGURE OUT HOW TO ADJUST TO LIFE IN THE NICU.  WE HAVE NO IDEA HOW LONG EITHER ONE WILL HAVE TO STAY IN THE NICU, BUT OUR DOCTORS HAVE PREPARED US FOR A MINIMUM OF 6 WEEKS.  SPEAKING OF OUR DOCTORS, WE ALSO ASK FOR PRAYER FOR THEM AND THE NURSES THAT WILL BE INVOLVED IN OUR CASE BOTH DURING DELIVERY AND AFTER.  AGAIN, WE WILL NEVER BE ABLE TO THANK EVERYONE FOR THEIR DILIGENCE IN PRAYING FOR OUR FAMILY.  I AM BROUGHT TO TEARS ON A DAILY BASIS FROM SWEET FRIENDS, FAMILY, AND EVEN STRANGERS WHO ARE TAKING THE TIME TO PRAY FOR OUR BABIES.  IT IS THE MOST HUMBLING EXPERIENCE OF OUR LIVES.    PLEASE JUST KNOW THAT WE ARE SO VERY GRATEFUL, AND WE PRAY THAT GOD BLESSES YOU FOR YOUR OUTPOUR OF LOVE.  
 
​IF THE TWINS ARE DELIVERED WEDNESDAY, I’M NOT SURE WHEN I WILL BE ABLE TO, OR HAVE TIME TO UPDATE THIS BLOG.  I PROMISE TO TRY MY BEST AND GIVE SOME SORT OF QUICK UPDATE AS SOON AS I CAN.  MARK AND I ARE GOING TO GIVE MY SISTER OUR PHONES THAT MORNING SO SHE CAN TRY AND SEND OUT AN EMAIL AND POST ON FACEBOOK.  IF THEY ARE NOT DELIVERED WEDNESDAY, I WILL UPDATE THE BLOG THAT DAY.  THANK YOU AGAIN FOR YOUR PRAYERS.  
 
MUCH LOVE,
B.J. AND MARK
 
“DO NOT BE ANXIOUS ABOUT ANYTHING, BUT IN EVERY SITUATION, BY PRAYER AND PETITION, WITH THANKSGIVING, PRESENT YOUR REQUESTS TO GOD.  AND THE PEACE OF GOD, WHICH TRANSCENDS ALL UNDERSTANDING, WILL GUARD YOUR HEARTS AND YOUR MINDS IN CHRIST JESUS”
PHILIPPIANS 4: 6-7