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!

Our weekend started off great with a long awaited visit from the gastro team on Friday. After their initial consult some changes were made that resulted in a great weekend for Harper. They’ve determined that she has severe reflux issues, so they increased her Prevacid dosage and changed her formula from the Enfamil Gentlease to Elecare. As far as her feeding goes, progress was made this weekend… Her tube feedings have been sped up to go over an hour and a half, and on Friday she took 12 cc’s orally. She didn’t get another try until Sunday afternoon, and she decided to really show off and take 50 cc’s in just ten minutes! Everyone was so excited that they wrote orders for her to be offered a bottle at every feed from now on, and our nurse said that the g-tube surgery may be put on hold if she continued to do so well. However, her 6:00 feed did not go so well and she only took 10 cc’s and grew very frustrated with the bottle and the pacifier.

Tomorrow (Monday) the GI team will be back in to discuss our options. If they decide to go ahead with the plan and insert a g-tube, the question will be when and where. There is not currently anyone here in Wilmington to perform the surgery. There is a slight possibility that a surgeon from Chapel Hill could come here and do the operation, but apparently that involves a lot of hospital politics. The other option is to transfer us back to Duke since they have all of her records and we are established and known there. With the surgery we would be looking at roughly a week or so of recovery for Harper and training on her equipment for us, then a home healthcare nurse to help us manage her care at home as well as physical and speech/occupational therapy in our home.

A lot of big decisions will be made this week to determine what will be best for Harper and our family, so we appreciate you praying with us… As we have been learning, let us not be afraid to pray boldly and with confidence! We know He hears and answers, and is using Harper to bring glory to His name… Thank you always for your support, encouragement, and prayers!

Well, if you had told me two months ago we’d be where we are right now, I don’t know if I would have believed you! I never could have imagined all that our sweet angel would go through in her first two months of life- looking back I still have a hard time believing some of it!

But here we are, celebrating two full months of life and love and hope and great miracles. At two months, Harper weighs 10 lbs 4 oz, two pounds and one ounce greater than her birth weight. Her head circumference is still maintaining a steady measurement, and she currently shows no signs of permanent brain damage.

Harper’s long list of medications has dwindled down to just a few… We are almost done with the weaning meds. She receives one tiny dose of methadone a day (only 0.02 mL) at this point, although she is struggling a bit still with that wean and has to take an occasional “booster” dose of Ativan to combat those withdrawal symptoms (today was one of those days). Her other meds are Prevacid for her reflux and Keppra for seizures.

As far as feeding is concerned, progress really has not been made. She is still being fed through the feeding tube in her nose, taking 114 cc’s over two hours with a two hour break between feeds. Since our exciting four cc’s from the bottle we haven’t taken any. In fact, today was the first day since then that Harper would even latch onto the bottle at all. Our girl is a smart one- she has learned to suck the bottle like her pacifier, which is a non-nutritive suck. That means she’s learned to take it without pulling any milk out, therefore defeating the purpose! So, we have officially been referred to the GI doctor and are now just waiting for the consult to get her g-tube surgery set up. Bad news- it will be her fourth surgery already (although not nearly as serious as her previous surgeries- but still surgery). Good news- we can finally take her home once it’s done and everything is in place!

So, that’s where we are today… Just waiting for the next step, hanging out in the NICU, praising God for blessing us with such an amazing little person for whom He obviously has big plans.

Today this momma watched with tears of joy as our little fighter latched on to a bottle and drank four cc’s of milk without a single gag! After refusing to let the nipple in her mouth on Friday and then another long weekend of painful withdrawal from the methadone, this was a huge step forward.

You may wonder why I consider this to be such a miracle… Four tiny cc’s is such minuscule amount for a girl who takes over one hundred in a single feed! Yet that minuscule amount represents a great miracle, another promise, a reason to keep holding on to hope… When we first learned of the challenges to come with Harper, we did not know what to expect. They could not assure us that she would live, or that if she did what kind of brain function she would have. Every surgery she had put her at an even higher risk for disabilities and issues, one of which was her ability to suck and swallow. Something that is so natural for a person to do was a huge obstacle for Harper- yet today she did it with ease. It was just a tiny bit, but that tiny bit proves that her brain has not been permanently damaged in that area. For us, that is just one more evidence of the miraculous power of a God who loves us and has a grand plan for our sweet girl.

Praising God today for another victory and for all of our prayer warrior friends who keep praying us home! So thankful that we can rest in the promise of my favorite scripture (Rom. 5:3-5)… “hope does not disappoint…”

Today this momma watched with tears of joy as our little fighter latched on to a bottle and drank four cc’s of milk without a single gag! After refusing to let the nipple in her mouth on Friday and then another long weekend of painful withdrawal from the methadone, this was a huge step forward.

So what does this mean in terms of Harper’s future? It means that her brain surgeries did not cause permanent damage that would forever prevent her from being able to swallow! This was a concern of the doctors and therapists, and they weren’t sure she would learn to swallow enough to eat on her own. Today’s progress gave them confidence that one day she will be able to solely feed by mouth.

There is a however, though. Today she managed four cc’s… She currently takes over one hundred in a single feeding period, and that number is steadily increasing as she continues to grow (speaking of, she hit the ten pound mark this weekend!). Based on that, her speech therapist does anticipate a g-tube surgery in our future. It’s just a matter of when and where, but she said today that they know now that it won’t be something she has to keep forever.

Praising God today for another victory and for all of our prayer warrior friends who keep praying us home! So thankful that we can rest in the promise of my favorite scripture (Rom. 5:3-5)… “hope does not disappoint…”