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