Sunday, June 26, 2011

Harper Girl is HOME!!

Friday was very bittersweet!  We got to bring our sweet girl home from the hospital after 6 weeks of hoping and praying to have her home.  However, it was so hard to leave our precious Henry behind.  I have had a very hard time dealing with this, and having it finally here was tough.  We apologize for not telling anyone about Harper's homecoming, but I have been in a state of disbelief, panic, and guilt.  Friday, Mark and I kept asking the nurses if they REALLY were sure they wanted to let the two of us take her home.  She's so tiny and I am constantly worried that I'm going to break her.  Luckily, everything has been just fine and we have already had a visit from her Home Health nurse.  I got a little panicked when the nurse mentioned that we should notify the fire department and 911 office that she was home.  Of all the things I've checked off my list, I hadn't even thought of that!  The past 24 hours all I have thought of is the movie Look Who's Talking.  I can only imagine what this sweet girl must be thinking of her crazy parents. I'm sure if Mark and I had been filmed it would be an instant comedy.  But, we are adjusting just fine.  My mom has spent the weekend with Henry and she is constantly texting me pictures, so I haven't had the meltdown that Mark and I were just sure was coming.  The weekend's not over yet!  Below are some pictures from Friday and Harper's first night at home.  Thank you all again for your many prayers, and sweet messages of encouragement.  Mark and I are so grateful, and we just ask that you keep praying for our family during this transitional time.  We won't feel complete until our sweet Henry is at home with us.

Saying goodbye to Henry.  This was the first time they had been together since they were born.

This is what mommy was doing as well!

Harper saying goodbye to Dr. Jacques and Dr. Joi.  We love them so much!  

Saying goodbye to Dr. Ferguson!  We love him, too!

Getting ready for the long ride home.

So cute in my car seat.

Goodbye room 430!  

She slept the entire ride home.  She's such a good baby!

Walking in to her new home!

So sweet!

Gonna stay in mommy and daddy's bedroom until brother comes home!

I think she likes her new bed.

Daddy took the very late night feedings! :)

Thursday, June 23, 2011

A Long Road Home

Yesterday our baby girl officially weighed 4 pounds!  What a huge praise!  Yesterday also marked their 6 week birthday.  It’s hard to believe that so much has happened in 6 weeks. 

Henry has had a few minor setbacks.  Last week, I stepped out of his room for about 20 minutes to grab lunch, and when I came back, his heart rate was bottoming out and he was blue.  I almost had a heart attack.  He has been doing this off and on now ever since.  We have finally figured out that he may possibly have reflux.  At least that’s what we are hoping and praying it is.  He is currently being treated with Prevacid, and he hasn’t had any episodes in the last 24 hours, so we’re thinking maybe the worst is over.  Other than this, our sweet boy is improving each day.  He now weighs 5 pounds 9 ounces, and just this week he got his feeding tube removed.  Praise God!  He is still on oxygen, but we are trying to slowly wean him off as much as possible.  

We are gearing up to possibly bring Harper girl home very soon.  Our doctor told us this Monday, and everyone at rounds laughed because I lost all the color in my face.  Please don’t think I’m not excited about the fact that she’s doing well enough to come home, it’s just I am now freaking out about the fact that she’s, well, going to be home!!!  All those “first time mom” fears started kicking in and I have started thinking about all the things that could possibly go wrong.  I came to Corinth Tuesday night for the first time in almost 12 weeks.  I feel so bad that I didn’t let anyone know I was home, but I wanted to clean my house, get things organized and ready to bring Harper home, and then get back to my babies as fast as I could.  Honestly, it didn’t feel right being home without them.  I am so thankful that Harper is coming home soon, but I’m also heartbroken that our precious Henry will have to stay in the NICU.  Mark, my mom, and I have figured out a schedule where someone will be with Henry and Harper at all times.  I know I should find comfort in that, but I’m going to miss him so much when I’m away, and I’m going to miss Harper when I’m here in Memphis with Henry.  Mark and I are just so thankful for my mom.  She has completely rearranged her life to help us.  Not that she minds, but I am so grateful for her none the less.  I’m not really sure what we would do without her.  I’m also very thankful for my dad, Mike, who drives back and forth to Memphis to be with us.
I have often said that this is not the way Mark and I envisioned having our babies.  Well, this is certainly not the way we planned on bringing them home either.  Our doctors have given us explicit instructions on how to care for our babies during this critical first year.  Number one on the list was to limit their amount of exposure to germs.  This means little-to-no contact with anyone and absolutely NO contact with other children.  They told us that any kind of bug, virus, or infection could send either one of them straight back to Le Bonheur, or even worse, kill them.

This absolutely breaks our hearts, because Mark and I would love nothing more than to show these babies off to the world, or at least to everyone in Alcorn County who have so diligently prayed for our family!  Essentially, we cannot have any visitors to our home for the immediate future.  I have struggled with even writing this because Mark and I feel like so many of you have been traveling on this journey with us.  We have felt so blessed from the outpour of love and support from our friends, family, and community.  However, I feel like God has entrusted us to care for Henry and Harper, and part of that is to keep them safe these next few years.  Henry has a very long road to go before being considered healthy.  He has been diagnosed with Chronic Lung Disease.  This is due to the CCAM in his chest that was removed, the immaturity of his lungs and the fact that he lived off of an oscillator and then ventilator for the first 4-5 weeks of his life.  Due to this, any sort of respiratory infection, especially RSV, would be fatal to our little boy.  Our doctors have told us that most infants with CLD usually grow out of it by two years of age.  It will be something where they keep a close watch on it over the next year.  Both, Henry and Harper, will come home on Home Health Care.  We will have a nurse come to our home a couple of times a week as well as physical and speech therapists.  I find a lot of comfort in knowing that some sort of health care professional will be coming in to check on them.  When Henry does finally get to come home, he will come home on apnea and heart rate monitors, as well as oxygen, so I am so grateful that his doctor is sending him home on Home Health.  Each visit will reassure this scared mom and dad that everything is ok.

I pray that everyone will understand why Mark and I can’t get our babies out or have many visitors to our home.  I constantly worry about people thinking I’m being “neurotic” over my children, but Mark quickly reminds me that we have a very different set of circumstances than most people.  We had to watch our babies fight for their lives.  We had to sit helplessly and listen as the doctor told us our son wasn’t going to live.  Henry and Harper are our little miracle babies.  They are our gifts from God, and we are not going to take the responsibility that God has given us lightly.  I hope and pray that everyone will understand. 

I promise to try and update the blog more frequently and add more pictures.  I started this blog several years ago as a silly way to keep up with college friends.  Today, this blog is a way to document Henry and Harper’s little lives.  It’s also a way for us to somehow show God’s amazing grace over our little family.  My prayer is that He get all the glory and praise.  A friend showed me how I can have this blog printed into a book, so essentially, this blog is going to be Harper and Henry’s baby book. 

Please know that we are so grateful for all the prayers and we humbly ask that you please continue to pray for our sweet babies.  Mark and I are just so thankful for all the love and support that we have received from our family, sweet friends, and even complete strangers.  We are blessed beyond measure.

Much love,

B.J., Mark, Harper, and Henry     

Harper and her sweet little "jazz" hands

Henry snuggling with mommy

Henry wearing "real" clothes for the very first time

I think he likes it!

Teeny Harper wearing "real" clothes for the first time

Not happy!

She guesses she likes it too!

Another family photo

Sunday, June 19, 2011

Father's Day

"A truly rich man is one whose children run into his arms when his hands are empty."

Today is Mark's first Father's day!  I just wanted to take a minute and brag on my husband.  He has been my rock these past few months.  When I married Mark, I had no idea what kind of father he would be.  I was so in love with him that I really just didn't think about things like that.  I will say that if it were possible, these past few weeks I have fallen even more in love with him.  He is the best daddy already.  We both just can't stop talking about Henry and Harper.  We love them so much.  I know this post is really cheesy, but let me just say that Mark is the daddy that I always wanted as a child.  I am so proud that my children will never question how much their father loves them.  I thank God every day for bringing me such a godly man to share my life with and raise a family with.  Mark, we love you!  Happy Father's Day!!

Mark changing Harper's very first dirty diaper.  It also happens to be the very first diaper Mark had ever changed!

Wasn't so bad! :)

Saturday, June 11, 2011

Major Changes

Wow! What a week it has been! God has been so good and continues to bless our little family.  As most of you know, and as was stated by B.J. in her last post, Henry came through surgery, and he did super!  As a matter of fact, the head of pediatric surgery came by a couple days ago and stated that our little boy was the talk of the hospital and that he was doing "awesome!"  That, alone, would be enough for B.J. and me in one week, but God has continued to heal and strengthen both our little ones throughout the week.  They are starting to make HUGE improvements daily. And what God has done with Henry and Harper since the first of the week is no less miraculous.

Our little man came off the ventilator late yesterday afternoon and he has tolerated it wonderfully.  Now, he is still receiving some oxygen support through his nose, but he is breathing ON HIS OWN.  And his lungs continue to function properly without the additional support.  God is so good!  B.J. and I were so excited for this moment.  Not only because our little boy is one step closer to getting better and going home, but because we finally got to see what he truly looked like for the very first time.  Since he was first born he has had a tube running down his throat and tape all over his face, so we had an idea of what he looked like, but never really knew for sure.  Well, he is adorable, just like his sister.  As if that was not enough, his chest tube was also removed late this afternoon.  He seems a little more irritable, but for the most part seems to be tolerating it just fine.  I think he's just excited to get another one of those lines running out of his body removed.

We are also so excited to report the continued improvements of baby sister.  Harper has been taken off of all liquid IV feeds and strictly taking milk.  Her PICC line was also removed on Thursday.  Now she is  just hooked up to one monitor that is tracking her vitals.  She has continued to be daddy's little rockstar!  She and Henry have also been able to maintain their core body temperature, thus allowing them to be moved to regular cribs. This only occurred late this afternoon.  That means no more incubators!!!

As I said, it has been a very busy week.  The kids are improving so quickly and changes are being made so fast, that B.J. and I are almost fearful instead of excited.  I know that sounds crazy, but when you've basically been getting bad news and preparing for the worst for 12 weeks, it's hard to believe that you could be coming out of the woods and the clouds could be lifting.  But as we've been saying all along, we know that God is with us, we know He has a purpose and a plan, and we have to trust in him - in this case in the good times, not just the bad.  Please don't misunderstand.  We know our babies could still have setbacks, but we rejoice in the progress they have made.  And we continue to pray that their improved health will continue.  The most important thing now is that Henry can continue to recover from his surgery and that his lungs will grow strong and healthy.  Now that the chest tube is out, there is a risk that his right lung could collapse, so we pray that the lung continues to stay fully inflated and the site will stay infection free.  We also pray that both of them will start taking to the bottle and that their feedings will allow them to start growing and gaining weight (most importantly Harper girl).  And as always, that these two can and will stay infection free.

B.J. and I, again, cannot express our gratitude for the amount of support and prayers all of you have given our family.  It has helped us, not only this week, but throughout our entire journey.  We thank God for each and every one of you.  We thank God for our little angels Henry and Harper.  And we thank God for still being in the business of miracles.

God is good... all the time!

Mark, B.J., Henry and Harper

mommy with her little man

what a beautiful sight AND sound

Henry resting peacefully in mommy's arms

Harper Girl in her new crib

Harper Girl tuckered out after her feeding

"This is the best I've slept in 4 weeks!"

wrapped up like a burrito

Tuesday, June 7, 2011

Praise and Thanksgiving

“Give praise to the Lord, proclaim his name; make known among the nations what he has done.”
1 Chronicles 16:8

        We are praising God today for the miracle he performed on our sweet Henry.  Mark and I had prepared our hearts for the absolute worst.  Doctors and nurses would say things like, “many children are able to live full lives with just one lung.”  Then there was the thought of, “what if he doesn’t make it through the surgery,” or “What if there is no viable lung tissue and the left lung never develops?”  To say that the past few months have been stressful would be the understatement of the year.  This past weekend I honestly thought I was about as close to a nervous breakdown as anyone could ever be.  Sunday, Henry had to have a blood transfusion because his hematocrit was too low for surgery.  Sunday night we were up most of the night with him because his PICC line kept getting blocked.  Monday morning the surgery was scheduled for 8:30, and at 6:45 they called and said it had been bumped up to 7:30. The surgeons told us the surgery could last up to 3 hours or more and that they would call us each hour with an update.  After an hour, the nurse called and said that the surgery was over and that they would be back with Henry in about 30 minutes.  Mark and I immediately thought something had gone wrong.  Why were they finished so fast?  Those 30 minutes that we had to wait were the longest thirty minutes of my life.  When they finally got to his room, the surgeons told us that the surgery was very successful and that once they were able to remove the tumor, which was a little smaller than a tennis ball, they were able to see viable lung.  The tumor was on the right side, and you have three lobes on that side.  They had to remove the lower lobe because it was too greatly affected by the tumor, but the upper and middle lobes were there and seemed to be ok.  They wanted to do a chest x-ray immediately to see if the lungs had expanded.  Remember, the tumor had displaced the heart to the point that it was pressing the left lung and keeping it from fully expanding as well.  The doctors were absolutely amazed at what they saw.  The x-ray showed that not only had the heart completely moved back into its correct position, but also the lung on the left side was FULLY expanded, and the top and middle lobes on the right side were fully expanded as well.  They said that comparing that x-ray with the one they took at 6 a.m. the morning of surgery, it did not even look like the same patient.  That is totally GOD! 

       Henry still has a very long road to recovery, but the doctors told us that once he fully recovers, he would be a healthy little boy.  Our son will be able to run and play without it hurting him.  The next step is to wean him off of the ventilator.  The doctors are hoping that could be as soon as the end of this week.

      How great is our God!!  I know I’m probably doing a terrible job of truly articulating the miraculousness of yesterday’s events.  I don’t think any of the doctors expected such a wonderful outcome.  Every doctor and nurse that has seen the x-ray has come by Henry’s room and said they are just amazed.  I am as well!  Yesterday afternoon, I was quickly reminded of how different the outcome could have been.  I was walking down the hall and I saw all the doctors crowded in another room.  As I got a little closer I saw the baby’s mother and I immediately knew that her news wasn’t good.  It broke my heart and I knew just how easily that could have been Mark and me receiving that news.  I am so grateful to God and I will never stop singing his praises.  I know that horrible things happen, and I know that even when bad things happen, God is still good.

      If I have learned any lesson through this, it’s that life is so precious and God has a great plan for each of us.  I believe his plan for my life was to be mom to Henry and Harper.  Their little lives have certainly changed mine.  I’ve also learned that in your greatest time of need, God will provide.  He has blessed Mark and me with precious friends and family who have been so faithful in praying for us.  He has blessed us with incredible doctors that have honestly become like family.  Henry and Harper even call two of them aunt and uncle!   He has blessed us with the FedEx House where I have been able to stay and be close to my babies, as well as Habitat for Hope, a ministry that has provided us with spiritual support as well as dinner.  In times where I have been rock bottom, somehow God has gotten me through.  My prayer is that I can somehow use what God has taught me through all of this to bring glory and honor to Him!  I pray that God will use Henry and Harper’s little lives to show people his grace and mercy. 

     Thank you all for your prayers.  I have not had the time to properly thank everyone, or reply to emails and texts like I should, but please know that Mark and I are so very grateful to each of you.  We are blessed beyond measure.  We humbly ask that you continue to pray for Henry and Harper.  The main thing now is that they remain infection free.  Our prayer is that we can all four be home by August.

Much love,

B.J. and Mark

“Shout for joy to the Lord, all the earth.  Worship the Lord with gladness; come before him with joyful songs.  Know that the Lord is God.  It is he who made us, and we are his, we are his people, the sheep of his pasture.  Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.  For the Lord is good and his love endures forever; his faithfulness continues through all generations.”               Psalm 100        

Harper, fast asleep

Holding sweet Henry before surgery

Harper LOVES her bottle

Wednesday, June 1, 2011

Henry's surgery

Henry and Harper are now three weeks old!  Praise God, for He is good!  Not a lot has changed this week, but our babies are continually growing and thriving, and for that we are truly grateful.  My mom and I got to visit with our sweet Dr. Samson today, the doctor who delivered H and H, and we all just sat there in awe of how miraculous these past three weeks have been.  We were all so scared in the beginning, and we still are, but we have a great deal more to be hopeful about than we did just three short weeks ago.

Harper has been taking her feedings now for the past week and her tummy issues seem to be a thing of the past.  She is steadily putting on weight each day.  Big girl now weighs 2 pounds and 15 ounces!!!  Just one little ounce away from 3 pounds!! We even scheduled a "bottle" feeding today with her speech therapist, but Harper refused to wake up for the appointment.  She needs her beauty rest, ha ha!  We are scheduled to try again tomorrow.  She is still the sweetest little girl.  She loves to be held, and I oblige her by holding her for hours.  She loves to be sung to, and her favorites are "You Are My Sunshine," Coldplay's "Swallowed in the Sea," "I Will" by Allison Krauss, and her absolute favorite is Stevie Wonder's "Isn't She Lovely!" (Just the chorus, because that's all I know)  We are more and more thankful everyday for this beautiful little girl and all the joy she brings us.

Our sweet Henry is doing about the same.  He has plateaued as far as improving goes.  The past few days, Henry has become more alert and curious.  His eyes look around and follow voices.  He is growing so tired of the tube down his throat.  Night before last he extubated himself and gave all the nurses a scare.  He's quite a little fighter.  He may give his spunky sister a run for her money.  He cries and pitches fits just like her, but it's heartbreaking to watch because you can't hear him.  The tube down his throat prevents the vocal chords from making a sound.  It's just pitiful.  Hopefully, once he has his surgery, we will be able to hear his beautiful little voice.  He, too, loves to be sung to.  He loves all of Harper's songs, but his favorite is the Tarzan song by Phil Collins, "You'll be in My Heart."    

Our big news is that we have scheduled Henry's surgery.  It will be this Monday, June 6th.  We don't know what time yet, and we may not know until the day before.  Mark and I are still praying for a miracle.  It is so scary to have a three and a half week old baby who weighs 4 pounds undergo such a major surgery.  We feel assured that the surgeons and the neonatologists would not hastily rush into surgery, but we are still so scared.  One of his surgeons said that he was "cautiously optimistic" that Henry would be fine and possibly have some viable lung tissue.  We are trying to be "supernaturally" optimistic.  We know that nothing is too great for our God.  Through Him ANYTHING is possible.  We pray that when they remove the tumor that Henry will have a perfectly healthy lung.  But ultimately, we pray for God's will.  We are also praying for God to fill Mark and me with a peace that surpasses all understanding and lots of grace to get through that day and the days to come.  Henry has a long battle ahead of him, but we know he won't be alone.  

Thank you for your continued prayers.  We are so grateful.

Much love,
B.J. and Mark

What a BIG smile!!!

Harper girl hanging out in her bed

Sweet Henry

Look how big I am!