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).

Harper left Duke with a smile, and we found her smiling again when we met her at New Hanover… Our girl is happy to be back!

I’ve been slack on the updates the past few days, but we have had our hands full with our two big girls on spring break and our steadily progressing baby girl. As we all know, no news is good news! Harper is doing amazing things, and it just keeps getting better. She is starting to suck a pacifier (on her own terms, of course), and continues to hold down her feeds and all of her meds. In fact, she is so awesome that she will be heading back to the coast tomorrow! We will have one last round with her team here in the morning, and then she will be on her way to NHRMC (with the rest of us close behind her). Thank you, thank you, thank you for your prayers… Anyone who had any doubt about the power of prayer can look at Miss Harper and see that God still answers! Keep them coming so we can get our girl to a full recovery.

Prayers have been answered thus far… We will be 24 hours on the new feeding pattern at noon, and we’ve had no vomiting at all! They have discovered that she holds a lot of air in her stomach, so they’re venting her after her feeds and have adjusted her feeding tube and all is well. She is gaining weight and is at the 50th percentile for size for her age. Due to the holiday weekend we won’t transfer right now, but as long as all stays stable this weekend they will forge ahead with transfer plans next week!!!

Good morning everyone! We have a specific prayer request this morning… I met with Harper’s team this morning and we discussed her feeding issues. They have decided that they still want to work on her stomach stretching, but at a slower rate. So right now they are transitioning her back to feeding for three hours and then off for one hour, but they are doing it at a smaller volume than she has been on.

Here’s the request- if she can tolerate this pattern for the next 12-24 hours, they will have a more definitive plan in place for treating her feeding intolerance. That means she could be sent to New Hanover! If she holds down her milk until tomorrow her doctor said she could be ready to transfer as early as this weekend. Now, that also depends on if New Hanover has space for her, and he said they may not accept a case as complex as hers on a weekend. He also said it does not rule out the possibility of having to return after some time for a g-tube surgery depending on how well she learns to oral feed.

Right now we are fervently praying that she will hold down her milk over the next 24 hours, and that New Hanover will have space and welcome her with open arms. We appreciate all of you who will join us in these specific prayers today!

Matthew 7:7 ”Ask, and it will be given to you seek, and you will find; knock, and it will be opened to you.”

Matthew 21:22 “And whatever you ask in prayer, you will receive, if you have faith.”

Mark 11:24 “Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.”

John 14:13-14 “Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it.”