We’ve put many miles on our vehicle these past few months in our travels to and from Duke.  Today was our first clinic appointment with Harper, and the trip was a little emotional for both of us… We’ve driven this road to visit Harper or to leave her behind as we traveled home, but today we traveled with her.  It was an odd feeling to drive her there ourselves and carry her into the hospital… And an amazing feeling to carry her right back out of those hospital doors and load her up in the car to go back home!

I tried so hard today to get a happy, smiling picture of Harper… this is what I got:

But I love it!  This is my girl, my sweet miracle, my reminder of hope fulfilled.  Her wild hair, silly faces, and bright eyes taking in the world around her, wiggling and flapping and moving… it’s all a blessing, an undeserved gift, and this silly little picture just captures her sweet little personality and reminds me once again of how unbelievably blessed I am.

Today I heard it again.  And, just like every other time, it stopped me dead in my tracks.  My heart fell somewhere deep inside of me, and right there on the sidewalk surrounded by people I felt completely alone and desperately fought the urge to vomit.  It was the sound of a helicopter flying overhead.

We’ve had lots of inquiries about how Harper is adjusting to home life, so I decided to post a “home update.” We finally got home Wednesday around dinner time… It took a while to get all of the paperwork taken care of! Harper has had an amazing couple of days so far. She still has her evening meltdowns, but they are much shorter than they were in the hospital, and she spends the rest of the day smiling and sleeping. She loves sprawling out without tubes and wires, and she really loves watching her big sisters (and they seem pretty taken with her, as well).

As far as her health is concerned, Harper is doing just fine. We had our first visit with the pediatrician today, and we will be seeing them twice a week for now to monitor her head circumference and her weight. Today her weight was down and her head size was up, but that could easily be because of different scales and different people measuring.

In addition to those appointments, we also have evaluations set up with an occupational therapist, a physical therapist, and early intervention services, as well as follow-up clinics both at Duke and at New Hanover. Needless to say, with all of those appointments plus keeping up with all of her meds and tracking her feeding, we are busier than we ever dreamed possible! And that’s not to mention keeping up with our 4-year old (who is sick this week) and our almost-9-year old (who is finishing up third grade and has an upcoming birthday to celebrate!). But, this journey with Harper has made us all the more aware of what a blessing all this craziness is… And knowing that every appointment we have gives another opportunity for God to be glorified- every medical professional looking at her story readily admits that Harper is a living, breathing miracle that no medical textbook can explain!

Thanks for still taking the time to follow Harper’s progress, and, as always, for praying!

After 72 days of intensive care nurseries, Harper will finally come home. Tomorrow is the “big day” (as Maddie keeps calling it), and it feels too good to be true! Harper received her immunizations today, and we actually ended up not having her MRI- due to all her brain has been through, there must be a lot of steps taken to insure her safety for the test, which involves a good bit of coordination between her team here and her team at Duke. So, for now, the MRI is on hold and we will go back to have it done in the next couple of weeks. We have a calendar full of appointments with various doctors and therapists over the next few months, and there are still a lot of uncertainties for Harper long-term in the opinion of the doctors… But we’ve been hearing that since the week before her birth and look where we are! We know the God we serve, and we know her future is one that has been planned out entirely by Him. We are looking forward to a life full of joy and miraculous surprises with our sweet Harper Lynn. Thank you all once again for praying so faithfully for our family over the past 11 weeks… We are blessed far more than we deserve!

Well, we made it. This is the week we’ve been waiting 10 weeks for! Harper is expected to come home for the first time on Wednesday or Thursday. She has remained tube-free and is now able to fully feed by bottle on her own schedule. She is a true testament to God’s healing power- her doctor told us this week that “she must have an angel sitting on her shoulder” and that the progress she’s made in the past week is “truly miraculous.”

Harper has an MRI tomorrow, and then we prepare for discharge. She has to gain some weight to prove that she can keep growing without tubes, but they put her on the maximum 27-calorie formula today so that shouldn’t be an issue. Aside from that we just have to get her immunizations done, get her home therapies set up, and make sure all of our appointments with the clinics here and at Duke are made.

Thanks for praying us home!

Just a quick update- Harper got an “A+” on her swallow study… No aspiration of any kind and a perfect swallow. She also took 60 mL and then the full 80 mL overnight. The doctor came in this morning and said they are all amazed. They can’t believe how well she is doing all of a sudden and they never anticipated such a quick turn around, so the g-tube surgery is on hold! If Harper can go 48 hours of straight bottle feeds we can talk about going home… So guess what we need to pray for, prayer warriors? That’s right- we are going to claim it right now beginning with her 2:00 feed! Could it be that we are finally seeing the light at the end of the tunnel? We think so! Thanks for praying specifically today that our girl will take all of her bottles and show these doctors that God is in the miracle business!

Our spunky little girl decided to be quite the show off today. Overnight she took 55 mL by bottle with her feeds, which is close to half. Then at her 10 am feed she took 59 mL, and we decided to try a bottle from home at 2:00- huge success! She took all but 10 mL of the full feed!

With that the doctor decided to adjust her feeding schedule- instead of starting 114 mL every four hours, they started 80 mL every three so that she could have a better shot at taking complete feeds orally. We started that at 4:45 this afternoon, and she took it all… But then vomited it all back up. Not quite the success we were aiming for.

Tomorrow Harper will have a barium swallow study to make sure she isn’t silently aspirating. That test will determine what steps we take next in terms of the g-tube. I was told today that we should not have to wait more than a week for a decision one way or the other, so we are patiently (or maybe not so patiently) waiting to see what we have ahead of us.

Thanks for all of those prayers… That sudden jump in the bottle feeds is just one more example of how God answers when we confidently pray! As my dad told me today, I just love it when God shows off!