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

Today was a much better day. Harper came off of the EEG machine, and it indicated no seizure activity. The doctors have decided that given how well she is doing and the fact that her vital signs are so good they will not do a spinal tap at this time- she has no other signs of having an infection, so they’re going to give her some time. They still strongly believe that the other night’s episode is seizure related, and they decided tonight to take her off of the phenobarbital and increase her Keppra dosage to see how that works for controlling seizure activity.

Harper got moved to a big-girl crib today, complete with mobile and aquarium toy (which she loved!). We got to wash her hair, change diapers, hold her, change her clothes… All kinds of wonderful parent things! She also got restarted on her feeds, although she did rip out a feeding tube and have to have it replaces. (Apparently she is over all of the tubes!)

One of our favorite doctors came to talk to us tonight, and she said at this point they feel good about Harper’s progress and their goal now is to get her ready to go home. That means they have to get her dosages worked out on her medications- finding the right seizure medications, making a decision about reflux meds, and getting her off of the morphine (she can go home with the methadone). We also have to get her feeding worked out as she still is not able to suck and swallow, so speech therapy will be working with her this week and doing some evaluations.

We continue to be so thankful to all of you who have been praying and sending such sweet messages of encouragement, and we are so blessed that God has given us such a feisty, spunky little girl who is showing everyone what His miracles look like!

We arrived this morning to see Miss Harper wide awake and very alert- too alert for the ventilator as she was trying hard to get free from it! Her feeds have been put on hold, and all medications are back to being administered via iV. Because she is so agitated with the breathing tube, they are having to give her morphine to keep her sedated enough to not rip it out (she is a fighter!).

We got a few more details regarding last night’s “episode.” She had been very lethargic and around midnight started to have several desat episodes. Her nurse (Ms. Charlene- aka Harper’s guardian angel) was checking on her when she just stopped breathing altogether, went limp, and her heart rate began to decrease. Ms. Charlene immediately began to bag-ventilate her, so she only went without oxygen for about twenty seconds. She also had to have another line inserted to receive a blood transfusion.

The doctors do not feel that this has anything to do with Harper’s laryngomalacia and are leaning toward seizure activity. So, Harper is now hooked back up to the EEG as well, which means she will be confined to her bed again with the probes all over her head and the video camera recording her. If nothing shows up on the EEG in the next 24 hours or so, the next step will be a spinal tap to rule out infection.

So, there is no considering heading back to the coast this week… This curve ball has certainly put a halt in the overall recovery process, but we know that this is the best place for Harper right now and that (whether we understand it or not) God has a plan that’s being worked out through all of this.

We had a very quiet weekend… Our big girls came up for a visit, and Harper did nothing but sleep. There were no major changes with anything, and she continued to do well aside from continuing with the vomiting issues and the morphine withdrawal.

Then out of nowhere we received a middle of the night call from the doctor- for reasons no one can explain Harper stopped breathing. The theory is that it is the result of some kind of seizure activity, but no one really knows for sure.  She had to re-intubated with a smaller breathing tube than before due to extreme inflammation of her airways around her vocal chord area. She is now on steroids for the swelling, and had to have another chest x-ray (which was all clear). She is already requiring minimal oxygen support, but we don’t know yet how long she will have the new breathing tube. They also did some lab work and had to give her a round of blood products. They did another c/t scan to check her brain as that is always a concern in her case, but (praise God!) it is still looking good.

Prayers are appreciated as always as we accept another set-back (but praising Him that they were able to save our girl again and that her brain is continuing to heal)….

Not much to report today… Harper slept pretty much the entire day. Standard visits from OT and speech, and neuro came and removed the sutures in Harper’s belly and those going down the left side and back of her head… Now the only stitches remaining are on the front right side of her head. She also got taken off of the Phenobarbital (one of her anti-seizure meds) so now we are down to just the Keppra for seizures. She’s still receiving doses of morphine, but they’re giving her extra methadone and Tylenol to try to lessen the need for morphine. Her breathing continues to sound better and better, so the doctors this morning said they feel the laryngomalacia will resolve itself with time. The best news we received today was from neuro- because her head has been so stable with the removal of the EVD, thu are waiting until Monday or Tuesday to do a c/t scan, and if all is still good by then they will consider having her transferred back to Wilmington (if she isn’t ready to be discharged due to other issues)!