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…”

If you’ve never gotten addicted to a drug or medication, don’t! Withdrawal is a miserable experience, and that’s what our Harper is facing this week. The full effects of no Ativan and a minimal dose of methadone have hit her full force, resulting in full body stiffness, tummy issues, shaking muscles, and long, inconsolable crying spells. It has made for some long, wearisome days, but any time I start to feel the whining come on, I am reminded of how every minute with our angel is a miraculous blessing.

We are still working with speech therapy and physical therapy, but it is still very slow going. The word used most often to describe Harper from that standpoint is “disorganized.” She is still very easily overstimulated and doesn’t quite know how to handle herself when too much is happening. Today I got to practice bottle feeding with her, but the milk in her mouth is still more than she’s wanting to deal with.

Harper also had her EEG today, which was eventful. She pulled the leads off of her head as fast as the tech could place them, then did not want to stop crying easily, so the hour long test took a good bit longer (and took a few extra hands to hold her down). As of tonight those results have not been posted, so we hope to hear from that tomorrow.

As always, thanks for continuing to remember Harper and our family in your prayers!

So I had an interesting conversation with one of Harper’s doctors at the hospital yesterday, and it has made me do some thinking. He was giving me her latest updates, and not much has changed, so we are still on this hold, just sitting and watching and waiting. As a parent, nothing is more torturous than being able to do nothing for your child but sit and wait! Apparently the doctor is aware of this struggle because he sat beside me and asked, “Are you a patient person?”

My immediate response was laughter… Me, patient? The woman who is always in a hurry, always on the run? The mom who rushes her kids every day and snaps when they can’t find their shoes again or leave their dirty clothes in the floor? The grouch who grumbles over crumbs on the table, toothpaste in the sink, juice down the front of a shirt? I am certainly not the role model for patience!

As I laughed at that thought, Dr. Moya went on to say that babies like Harper teach us a lot about control, or lack thereof…. That we can do everything perfectly by the book, think we have it all figured out, but then something like this comes along and life throws us a curve ball. Then we see just how little control we have.

I’ve been working that through in my mind the past couple of days as I sit here in a quiet hospital room with plenty of time to think. If nothing else, this past year has taught me that I can’t control a thing. How scary a thought that is for a control freak like me! But no matter what I do or how perfect things may seem on the outside, at any given moment it could all be gone. In this temporary world we live in, relationships get destroyed, people get sick, calamities occur… And no one is exempt from experiencing the pain and pitfalls and brokenness.

The catch is our response to such events… There are a lot of lost people out there watching to see how we react when life hits us hard, or when life is just full of little things like missing shoes and spilled juice. Every day is filled with opportunities to be a witness or a barrier. Unfortunately I find that far too often I respond with impatience and become more of a barrier for those watching, but praise God that He never gives up on me! As one of my favorite songs says, “Your love never fails, it never gives up, never runs out on me…”

This morning Dr. Moya made his rounds, so here’s the latest update for Harper:

1. Her head circumference has actually slightly decreased! This means everything is working properly with fluid drainage- major praise!!

2. Harper is on a very high dosage of Keppra (her anti-seizure med). The neurologist here is planning to do an EEG sometime next week so they can make a decision about decreasing how much she takes.

3. It’s time to get more aggressive with oral feeding, so we are working more with syringe feeding and they want speech to work with her at least twice a day.

4. Harper is doing okay with muscle tone and tightness, but for now we are continuing daily physical therapy.

5. The weaning of the Ativan and methadone is going great, and today will be the end of Ativan completely!

6. While Harper is making feeding progress, the doctor feels that it is moving slowly. So, he is giving her one week and then evaluating her. His thoughts are to have us consult with the gastro surgeon in a week about a g-tube so that she can go home and continue therapy there.

That’s the low-down for this weekend, thanks for the continued prayers!

Aubrey Grace

Today was a very special day… my newest niece, Aubrey Grace, joined us in this crazy world.  It was so exciting to get to hold her and love on her for the first time, but I was shocked that I found the experience a little bittersweet.  As I snuggled with her and watched her and gave her a bottle, I caught myself fighting back tears.  Tears of joy, first, as my experience with Harper has made me all the more aware of what a miracle the birth of a child is.  But I was also sad (and, honestly, in a very selfish way)- I realized how much I missed with my Harper.  Those sweet first hours and days for us were broken by the sound of a helicopter taking my baby girl away to a world of doctors and surgeries and tubes and wires and medications.  At six weeks, we haven’t had a first night together as a family, a first bottle feeding, skin-to-skin snuggling, a chance to just walk around the room while holding her… she’s grown and changed and been through so much, and as a mommy I’ve missed so many of those little things that I took for granted with my other children.

BUT (and this is a big “but”)… Harper is still alive.  I can have a pity party and feel sorry for us, or I can praise God for saving her and for allowing us to witness the miracle of her life.  Every step forward is a gift from God, a moment that we didn’t know we would experience with her.  No room for tears of sorrow when I consider how very blessed I am to be the mommy of such an incredibly strong miracle.

My happy little miracle

Well, we are now at a point of just waiting. Harper had visits from the doctor, the speech therapy team, and a physical therapist today, but basically the story is the same… we have to wait and see. She got her first experience with a bottle today, and the therapist said she did swallow a few drops, but that once she figured out something was coming out of the nipple she freaked out and backed off from it. However, they’re happy that she is taking to her pacifier more and that she’s starting to root and bring her hands to her mouth more- apparently these are all signs that she’s heading in the right direction.

The doctor today said that they are going to give her at least a couple of weeks to see how she progresses, and then make a decision about a g-tube. He also said that Harper tested positive for something called VRE, which is a bacteria that patients can contract in hospital settings if they’ve had lots of surgeries and antibiotics. It isn’t causing any issues for her, but because she has it, she has to be in “isolation,” which means that anyone who visits and holds her has to wear a stylish yellow gown and gloves.

In the meantime, we are continuing to adjust to our new roles as life outside of the hospital walls rolls on. Praying that we can find a good balance and that Harper will continue to show miraculous progress and get hooked on that bottle quickly!

Our first 24 hours back in Wilmington were uneventful, which is always great news with Harper! She is no longer a sick or critical patient, so it’s been a different experience for us. We were uncomfortable leaving her overnight on her first night, so I stayed with her. It was a very restless night- Harper has gone from being in a noisy room full of babies and alarms to a quiet, private room with no one around. It has been a bit of an adjustment for her, but she finally seemed to be settling this evening. It has also been an adjustment for us as we get used to new care for her and learn to juggle hospital life and home life with our big girls.

At this point Harper is there just to learn how to bottle feed, but that still seems to be going slow. Today we met her speech therapist but Harper was sleepy and uninterested so not much was accomplished. They removed her PICC line this afternoon, so she officially has no iV lines at all! We are down to just her feeding tube.

Thanks for the continued prayers- for those who have inquired, visitors are welcome. (Just call or text one of us to make sure we are there when you want to visit).