Thursday, August 25, 2011

A Praise and a Prayer Request

Wednesday was a very eventful day at our house.  As I said in the last post, Henry and Harper both had doctor visits in Memphis.  Mark and I, in our naiveté, had envisioned the day a little differently than it went down.  For one, we had hopes of stopping by the 4th floor of Le Bonheur, since we were already at the hospital, to say hello to all of our friends that we so dearly miss.  And two, we had hoped for a better report for Henry.  Needless to say, our day did not go as we planned.  But of coarse, we have learned through this journey that our plans are not always the best.  All was not lost though, we have a HUGE praise for our sweet Harper girl!

With two babies, whom we have never traveled with at the same time, my nerves were already frazzled by the time we arrived in Memphis at 8:30.  Yes, did I mention that I'm INSANE and scheduled Henry's appointment at 8:30 a.m.??  His appointment was with the pediatric pulmonologist.  Mark and I were hoping that this visit would give us some information as to how Henry's lungs have progressed since we left the NICU.  Mark and I were a little disappointed when a completely different doctor than the one we saw in the NICU came into the room.  Mark and I both felt like this visit was more like a "new patient" visit, rather than a follow up.  So, we were a little frustrated from the start.  Not to mention we had to wait an hour in the waiting room only to be taken back and wait another hour.  Wow, am I the complainer or what?!  :)
  We had a list of questions for this doctor, and he didn't seem to really answer any of them.  What we did find out is that Henry's oxygen saturation was a little lower than we would like for it to be.  The doctor said this concerned him.  He said he felt like Henry could possibly have pulmonary hypertension.  We also found out, thanks to our sweet pediatrician who had to call and hunt down these results,  that his blood gases have gone up.  All the more reason this new doctor feels as though Henry could have pulmonary hypertension, in addition to chronic lung disease.  We are scheduled to meet with a pediatric cardiologist Monday for more testing.  Poor baby, his whole life has consisted of being poked and proded.  As of now, it is looking very likely that Henry will have to be placed on oxygen again.  To what extent we don't know.  Please, please keep our little man in your prayers.  We are just praying so hard that this blood gas was just a one time thing, and that the next one will be normal.  We are also praying that the tests he has done at the cardiologist visit will all be normal and will rule out pulmonary hypertension.  While we were there, the new doctor did make appointments for us to meet with a GI specialist because Henry's reflux seems to be getting worse.  I am looking forward to this visit because I am ready to get his reflux under control once and for all.

Our HUGE praise is that Harper girl's eyes are fully vascularized!!  Praise God!!  At her last visit, one of her eyes had an area that had not even started to vascularize.  The doctor told me that day that I didn't need to start worrying yet.  Ha!  You can't tell a mom that!  But, turns out she was so right, our little Harper girl's eyes are great!  We go back with both of them in December, but that will just be a routine follow up visit.

I keep telling myself that God has gotten us this far, and that I have so much to be thankful for, but it's really hard not to get discouraged after a day like this.  Henry has been doing so good at home, or so we thought.  He is just the happiest little baby.  I mean, he smiles all the time.  You would never know that he is sick.  The doctor did tell me, again, that we must keep him isolated during the RSV and flu season.  Henry has come too far to let something like that be the thing that sets him back.  Or worse, but I can't even go there.  I guess this doctor's visit was just a wake-up call for Mark and me.  We've sort of become relaxed about his health.  He was doing so well that it was sort of easy to forget just how sick he still is, and just how far he has to go before he is truly well.

God continues to pour out his blessings on our little family.  NOTHING is impossible through Him.  His plans are far better than anything I could plan or even imagine, so we are just resting in that promise, and just asking you to please keep him, and Harper, in your prayers.  We are so grateful for those prayers, and for the love that our friends, family, and strangers have shown us!  God is good!


This is what Harper thought about getting up so early!  No smiles whatsoever!

Sweet little man in his firetruck outfit

Always smiling...

except when mommy tries to get a cute picture!

Eating our lunch in the car!  Exhausted after only a few hours in!

Monday, August 22, 2011

Checking in...

I am really slacking these days updating this blog.  I'm going to blame it on being incredibly busy and when I do have the time, I'm just too tired.  Thank you all for the sweet comments about HandH!  I am just crazy in love with these babies, so it makes me so proud that others think they're cute, too!  In my last post I mentioned that HandH weren't on the same schedule.  I have had several sweet people email me tips on how to get babies on a schedule.  The reason they are not on the same schedule is because Henry has to eat every 3 hours around the clock.  This is due to his lungs, reflux, the fact that he aspirates, and he has to be given medicine every 6 hours.  These issues prevent us from giving him a lot of formula at once.  Because of this it prevents us from trying to stretch out his feedings so that he can learn to sleep through the night!  The doctors don't want Henry to have too much fluid intake because of his lungs, therefore, we have to give smaller increments every 3 hours.  So, we basically sleep for an hour and a half before we're up to feed a baby!  Makes for a fun night!   Harper girl, however, is just a little rock star, as usual.  During the day she eats every 3 hours, and then we give her a bottle at 8:30 pm and she sleeps until 4 am!  I'll take that!  We went to Dr. Fowler today and Henry weighed 10 pounds 5 ounces, and Harper girl weighed 8 pounds 10 ounces.  So clearly, they're getting enough food.  They already take after their mom in that regard! :)  We are so fortunate that my mom comes on Tuesday and Thursday nights to give us a little break.  I am indebted to her for LIFE!!  Mark and I just thought we could make it on our own.  We made it exactly 5 days before we called my mom begging her to come let us sleep.  This past week I was so lucky to have Mark's mom here as well.  Henry and Harper had so much fun with their grandmothers while this lucky mom got to catch up on sleep!!

I hope I have not made life with these two angels sound horrible.  We are having the time of our lives.  Yes, I'm sleep deprived.  Yes, it would be nice to get out of the house from time to time, but I wouldn't trade what we have for all the sleep and fun outings in the world.  I only wish we could take them out and show them off!  The not being able to go to church, or out to eat with girlfriends with H&H has been hard. I'm really going to miss that this year.  My parents have graciously offered to watch the twins on Wednesday nights so Mark and I can at least go to bible study and see some friends.  That's a start!  I know soon enough we'll be back on Sundays, and H&H will be making all kinds of noise on our pew!  I'm looking forward to that day and dreading it all at the same time.  They grow up way too fast!  Just the other day I cried for 10 minutes when Henry no longer fit into size "newborn" diapers.  I know I'll miss this stage so much, so I'm trying to just take each day and enjoy it!

Henry and Harper both have follow up visits this Wednesday in Memphis.  We take Henry back to Le Bonheur for a pulmonology visit.  We are very anxious to hear how his lungs have progressed.  We take Harper to the pediatric opthamologist to have her vision checked.  I'm praying it has improved.  I'll be posting an update soon after!   We are so very grateful for the continued prayers for our babies.  Below are some pictures from the past week.  


Nonnie and Dzadzi (Polish for granddad, pronounced Judgie) came to visit!

Harper girl pouting!  So cute!

Henry and Dzadzi

Hanging out on her mat

Watching some sports I'm sure

Brother/Sister Love

Granddaddy and Henry

Family photo 

Sissy loving on Harper girl

Brandy came to our house to take pictures! 

Wearing "my sister rocks" t-shirt aunt Stef got him

Wearing "my brother rocks" t-shirt... too cute!

Sleeping with her hands up!  Someone asked me what these things are that we put on them when they sleep.  They are called "Frederick T. Frogs."  We got them in the NICU.  They are bean bag type positioners/support that's supposed to make babies feel more secure while they sleep.  I've looked everywhere to buy more, and I can't find them anywhere.  They are WONDERFUL!!  Harper can't sleep without them.

Sweet sassy girl in her tutu


Thursday, August 11, 2011

Happy 3 Months


Today Henry and Harper are 3 months old!  Goodness, how time flies!  Our sweet Harper girl now weighs 7 pounds, and our Henry weighs 9!!  AMAZING!!  Today also marks one week since we brought our Henry home from Le Bonheur!!   I can't even begin to tell you how thankful we are to have our family together, at home, at last.  We are so grateful.  It's been a very tiring week, as H&H are on completely different feeding schedules, which means this mom and dad basically aren't sleeping,  but it's been a wonderful week.  I've added some pictures from the past week below:




Saying goodbye to Le Bonheur.  I will forever have a special place in my heart for this hospital.  The doctors, nurses, respiratory therapists, and even the volunteers were incredible and we love them all so much.  I'm truly going to miss them.  


So many people have asked where we stayed while we were in Memphis.  We were very fortunate to stay at the FedEx Family House, which is across the street from the hospital.  Above is a picture of the house!  We are so thankful that we could stay so close to our babies.


Saying goodbye to Dr. Ferguson.  I've mentioned him on the blog before, but I absolutely adore this man.  


Saying "see ya later" to his Aunt Joi and Uncle Jacques.  I say this, because they won't be getting rid of the Maz family any time soon.  We love them like family!


So sweet!  Dr. Jacques is the doctor who delivered Henry and Harper, and Dr. Joi, his wife, was their first doctor while they were in the NICU at The Med, and then later was one of their doctors at LeBonheur.


I included this picture just because it's hilarious!  Ever wonder how many diapers a Diaper Genie can hold??  Well, a lot! Ha!


Brother is home, so Harper finally got to move out of mom and dad's room and into her own room.  She loves her bed!


Henry loves his bed, too!


Having "tummy time" with sister.


Harper has started really focusing on things.  We are praying this means her vision is improving.


B.J., what do you do all day??  Why haven't you done laundry?  Why haven't you called your friends back?  Why is this house a wreck?  Why have you quit wearing make-up?  Why, you ask!!!  Well, because I'm rocking these two little angels all day.  That's why!  I love them so much my heart aches, if that makes any sense at all.


This is pretty much what we do all day!  I'm in absolute heaven.


They love each other.  It's so sweet.  Personally, I can't even tell they're related.  They look NOTHING alike to me.  


He's already such a good "big" brother.  Be still my heart!  



Mark and I are so grateful to God for these two blessings he has given us.  On the ride home from the hospital, when we weren't scared to death from the storm, Mark and I talked about everything we've been through these past 4 months.  Our prayer is that we NEVER forget what God has done.  We want this experience to mean something.  Above anything else, whenever anyone hears the story of Henry and Harper, we pray that God be the one who receives all the praise and glory!  We have had so many people praying for our family!  I cry just thinking about all the emails I've received from complete strangers who were and are praying for our babies.  I have been humbled, changed, and convicted.  From the very bottom of our hearts, THANK YOU!  The love that has been shown towards my little family has been absolutely overwhelming and humbling.  As I try to put into words how I feel, how grateful I am, I am just speechless.  This next year is going to be very trying, as we have to keep Henry isolated.  We've already nicknamed our house "The Fortress of Solitude!" 

Thank you again for your love and support over the past 4 months.  

Much love,
B.J., Mark, Harper, and Henry

Friday, August 5, 2011

Reunited At Last

I have so much to write, and so many pictures to share, but right now I am savoring every second I can with my little family! I am SO SORRY if you have called or text me in the last 24 hours and I have not responded! Life with two is definitely busier than I ever expected, but I LOVE having my babies home!! Thank you, thank you, thank you for your prayers yesterday! I definitely felt them! We drove through one of the worst storms I've ever seen bringing our little man home. I was a wreck! As we pulled out of Memphis, the Casting Crowns' song "If We've Ever Needed You," was playing. I couldn't think of a more fitting song! Mark and I both had to laugh at the irony! God has blessed us so much, and part of that blessing is showing us just how much we really need Him!

Below are just a few pictures from my phone:





Just had to include this picture! The rain was horrible!




Getting ready for our visit to Dr. Fowler's office!



Play time on brother's mat!



My aunt gave us these adorable onesies! I guess she's a little biased! ;) Thank you, Aunt Hilda!



Once Mark goes back to work, and H&H are napping, I will post more pictures! As always, we are so very grateful for your prayers!

Much love,

B.J., Mark, H&H

- Posted using BlogPress from my iPhone

Wednesday, August 3, 2011

COMING HOME

Today is Mark's 34th birthday!!!! We will be celebrating, together, in Memphis tonight because

this little man,



gets to come home TOMORROW

Elated, exhausted, overjoyed, blessed, and scared to death are just a few of the emotions we are experiencing right now! I will do a much more detailed update tomorrow night, but for now, we are getting everything ready for this little man's homecoming!

Oh, and this is what sister, who thinks she is an only child, had to say about Henry coming home:



Haha! I can't wait for them to be together again! Fun times ahead!

Please, please keep us in your prayers. I knew this day would come, but I'm still very nervous. Henry is still extremely fragile. Please continue to pray that they can both remain infection free, and the God will equip Mark and me with the wisdom and endurance that we will need to care for our sweet boy! More pictures and updates coming soon!

- Posted using BlogPress from my iPhone

Monday, August 1, 2011

More pictures and GOOD NEWS!!

"In him our hearts rejoice, for we trust in his holy name." (Psalm 33:21 NIV)

Some pictures from the weekend:




Baby girl in her bonnet. Back in Memphis for her eye exam. Vision is still not great but her doctor said it's nothing to worry about yet. We go back next month so we are praying everything will be ok.


Hanging out with daddy


Daddy must have said something naughty! Haha


Sweet girl likes to sleep anywhere but her bed!


Listening to grandmommy read


Sleepy girl



Mark and I continue to be in awe of the miracles God is performing in our babies' lives. We are learning every day to trust solely in Him and never doubt what He can do!

In saying that, do you notice anything different in the next 2 pictures?






That's right!!! Henry is OFF OF OXYGEN!!! Late Saturday night our doctor decided to just "try and see" if Henry could tolerate being off of oxygen. Mark and I, of coarse, were nervous wrecks, but he did great! In fact, they checked his blood gases on Sunday, and they were better than they have ever been! How great is our God!!! This is HUGE for Henry. He is still very weak and his lungs are no where near what they should be, but he is continuing to improve and he continues to DEFY all the odds! Henry is the toughest little fighter and we are so proud of him. There is still the possibility that he may have to go back on oxygen permanently, but we are praying he can stay off.

We are still praying that our little man can come home soon! I will update the blog the second I know something. Right now, Mark and I are off to be trained on how to operate the machines that Henry will be on once he is home. This next year is going to be a challenge, but we are confident God will see us through. As always, we are grateful for your prayers.

- Posted using BlogPress from my iPhone