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.”

That’s right- a repeat performance. Harper went right back to the vomiting when they changed the feeding schedule, so we are back on continuous feeds. What does that mean? It means she has once again stumped her medical team! She cannot get out of here on continuous feeds, so they are discussing what to do next. The nutritionist is searching for a better formula option, and the doctors are back to contemplating a g-tube surgery in the near future.

Harper’s occupational therapist worked with her this morning during one of her “fits,” and was able to calm her down without the use of additional meds… Great praise because we are now day three without morphine! They also worked some more on oral feeding, but that was not as successful. Harper did suck her pacifier, but we were only able to do about five total drops of milk before she started gagging and sounding overly congested. So, that was another point in favor of the g-tube.

Harper’s neuro team also visited today, and she has been basically cleared by them. They removed her final sutures, and Dr. Fuchs said she is “wonderful” and can go home whenever they figure out this feeding stuff. He said her pathology reports showed that her cysts were not tumors, but they also were not true choroid plexus cysts, either. He said they appear to be an issue that occurred with the development of the lining of the choroid plexus, which is one of those things they just cannot explain. The good news is that because it seems to be a fluke in the developmental process, they do not anticipate there to be any further growth. She will continue to have her head and brain monitored always, but hopefully they will continue to be amazed by her!

For now we wait, but as this mommy waits, Psalm 139 keeps running through my mind- how grateful I am for His wonderful plan! “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” -Psalm 139:13-16

It’s been a slow start to the week here at Duke. Harper is maintaining a stable status apart from feeding. She had her gastric emptying study and the results were normal, ruling out any anatomical issues causing the vomiting. The plan now is two-fold… First, they want to slowly get her stomach to stretch so that she’ll be able to hold and digest the right amount of food for her age and weight. This means very slowly weaning away from the continuous feeds by gradually giving her more milk in less time. Today they started by feeding for three hours then taking a one hour break (so getting four hours worth of milk in three hours). That seemed to work this afternoon, but then tonight we had vomiting again, so we will see what the doctors say about that in the morning. If this process works, it would ideally take 7-10 days to get her where she needs to be.

The second part of the feeding puzzle is the fact that Harper still does not know how to drink. The whole suck-swallow-breathe process is rather complicated for a baby who did not have the opportunity to do it naturally from the start, plus there is the damage she has from being intubated for so long to contend with. She is still seeing occupational, speech, and physical therapists daily, but those skills just aren’t there right now. So, once they get to a point where she is able to hold her milk down, they will see if those skills have been mastered, and that will determine if they go forward with the g-tube surgery.

In other news, Harper is very slowly being weaned from the methadone, and has not needed morphine in two days now. Her head circumference is still stable, and her last set of sutures should be removed tomorrow. She had some visitors this week, so that was exciting- she got to see Pastor Mark and Ms. Lisa yesterday, and then Pastor Dwight today. Unfortunately Daddy had to head back to the coast this afternoon, but the whole family should be up here to see her next week! For now, Mommy gets to enjoy all of the snugly one-on-one time.

There isn’t a great deal to update this dreary Sunday afternoon. We met with Harper’s medical team this morning, and everyone still has the same concerns. Even with continuous feeds and Prilosec Harper continues to vomit. She is gaining a little weight, however, due to the higher calorie formula they are supplementing with, but this is not a long term fix. So, this morning they informed us that while they had initially hoped that Harper would be able to come through everything and learn to bottle feed with no issues, they are now having to look at other options.

That being said, Harper will have about another day with no major changes, and will go ahead with the lower GI study tomorrow. Tomorrow will determine what comes next, but they are looking at inserting a long-term feeding tube (a g-tube). This tube would go through her skin on her belly directly to her stomach, and all of her feeding would be done through it. The downside is that obviously that isn’t how we want her to eat and it involves another surgery, but they did say that after that surgery they could probably transfer us to New Hanover.

Aside from that it was a calm end to the weekend. Harper had a grumpy morning and had to be given lots of meds, but she stayed awake and happy for a while this afternoon, so we got lots of snuggles and play time! We’re looking forward to meeting her new doctor tomorrow and hopefully getting some more answers!

Harper had a rough start to the weekend… She was inconsolable in the early morning hours, so was given a dose of morphine. However, morphine didn’t work this time, so she was given a dose of Ativan for anxiety. This was the second time they’ve tried it and it has been effective, so they are now looking at adding anti-anxiety meds to her daily regimen (most likely Valium).

Harper had done great yesterday with the continuous feeds, but the vomiting started again this morning. We got there just in time to see her off for an upper GI scan, which showed some signs of reflux. They decided to do a trial run of Prilosec to see if that helps her hold down her feeds.

We had talked with someone last night about the possibility of having Harper transferred back to New Hanover, but our doctor told us this morning that Harper just isn’t stable enough at this point to be moved. (She also told us that this is her last weekend working with us- she’s a resident and has to move departments for more training, which was sad news… She has been phenomenal with Harper!). At this point there are just too many uncertainties with Harper’s medications and feeding issues, and, as she explained, they just are not able to totally rule out the possibility that some of these issues are a neurological problem. Unfortunately, that will be a long-term possibility with anything our little fighter faces… Her ventricles are still large and they spent so much time working in her head/brain that the doctor told us this morning that they just cannot tell us what long-term effects there may be so they have to be very cautious and give her plenty of time with her recovery.

It is always difficult to hear those words as a parent, but we have faith that God is not finished working miracles in Harper. We have been so excited about the progress we’ve seen Harper make that we tend to lose sight of what a blessing each little step truly is. We see each step forward as a step closer to home, and it is, but ultimately each step forward is another miracle, another blessing that at one point we didn’t know we would experience. So, no more complaining about how long we are here or how homesick we are- instead it’s time for us to focus on the fact that each minute we get to love on our girl is an undeserved blessing for us to cherish and praise God for.

Well, we were closer to coming home as this week was ending. Harper is almost off of the morphine, and is able to go over 24 hours at a time without it now. Today was supposed to be the start of having her meds transferred from iV to orally (or through the feeding tube, in her case).

Unfortunately, as we have learned with Harper, things rarely go as planned. She is below birth-weight and is not gaining weight, and has decided to keep vomiting after feeds. She has now been weaned back to continuous feeds through her tube, which is a major step back because she cannot begin to take a bottle if she’s only able to handle continuous feeds. (That means they give her the same amount of milk, but very slowly through her tube so that she is constantly getting just a little bit and her stomach doesn’t have to hold larger amounts). Everyone today has old us that a baby of her age and size should not have to be fed this way, so she once again has stumped her medical team. They already did a reflux test and decided that she does not have reflux, and now she will undergo a GI study on Monday to check her intestines and her digestive rates.

We met with her physical therapist again today, and she is doing great muscular-wise. Her head shape is improving, and we are continuing to work on her neck muscles so that she will be more comfortable turning to the left. We also attempted to work with her speech therapist, but Harper was too drowsy to get anything accomplished. On a fun note, they are ready for her to start trying a swing or bouncy seat, so Mommy and Daddy have some more shopping to do!

There isn’t much to report on Harper tonight, which is a good thing! She had a nice, calm day… Only one dose of morphine in 24 hours, and the only issue she had today was vomiting after feeds. However, while they are having to work out feeding amounts and schedules, we had a step forward in that she started sucking her pacifier and we were able to work with the speech therapist on practicing swallowing with a pacifier and syringe.

We’ve been so focused on Harper’s health that we haven’t said much about how we’ve been blessed up here in Durham. As most of you know, we have been housed in the Ronald McDonald house, and it has been an incredible blessing. They only charge $10-$15 per night for families here, and that gives us a room with two beds and a tv, access to a shower, and a hot meal in the evening provided by various volunteer groups. It has been amazing to be on the receiving end of such an outreach… There are so many wonderful people out there who are giving their time and resources to help the children and families here.

Not only are we blessed by the workers and volunteers here, but we have met some great families with incredible stories as well. When I start to feel discouraged or frustrated with our situation, God puts someone in my path here to give me perspective on how very blessed we are… Older children hanging out here, smiling in spite of transplants and treatments and procedures… Families who have been here for months, some even a year or more… Parents who have given up everything to be here, fighting alongside of their children. Just tonight as we waited in line for dinner we met a family celebrating their baby’s first birthday after they spent the first six months of his life here awaiting a heart transplant. Around the house are painted ceiling tiles and framed artwork and poems telling stories of miracles of life and others sharing memories of the little time they had with their angels. It can be emotionally draining at times, but overall it is a place of great hope. And praise God, we know where our hope lies!

“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. AND HOPE DOES NOT DISAPPOINT US, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” -Romans 5:3-5