We are praising God for a much more peaceful and restful day today! So far there’s no word yet on results from yesterday’s tests, but Harper’s breathing seems to be a little better today and we’ve had no vomiting so far! She had visits from both the occupational therapist and the speech therapist today. OT is working on sensory issues to help keep her calm since that’s been a major issue the past few days, and speech is just focusing on getting her familiar with a pacifier (they can’t do much more with her at this point with her crying spells and breathing issues). While we haven’t heard an official word back from the ENT, Harper’s primary medical team seems to think that a lot of the issues we are seeing right now could be withdrawal-related. They are trying hard to get her off of that morphine, but it is a difficult process right now. She has a lot of different things going on to cause her pain and discomfort- her brain has been operated on a few times, she has fluid in her head, stitches on both sides of her head and on her belly, stomach issues from all the meds and finally getting milk feeds, skin issues on her bottom as a result of the stomach issues, swollen airways that make it hard to breathe, morphine withdrawal, and people constantly sticking her and messing with her and doing unpleasant procedures on a daily basis… She’s entitled to be cranky and miserable and to want that morphine to make her feel better! But hopefully as they continue to increase her methadone she will find more rest and become a happier girl again. At least we know that today she was able to find some quiet rest!

Here’s a basic run-down of yesterday’s events before we head into today…

Harper was very agitated all day with very little rest. She has full-blown stridor at this point, which means she squeaks when she breathes and has a very difficult time breathing. She began to have a few small episodes in which she would “desat,” which means she just wasn’t getting good air. By days end she received two breathing treatments by the respiratory therapist for her swollen airways, had another chest X-ray, and had a visit from the ENT specialist. The ENT performed a laryngoscopy, a procedure where they put a scope through her nose and airways and take pictures. Her initial thought is that Harper may have laryngomalacia, which is where part of the larynx (voice box) is weak and collapsing, blocking part of her airway. However, further evaluation is needed, so we should hear back from them today. Harper also continues to vomit frequently, so two things they are considering are adding reflux medicine and performing a bronchoscopy in the OR, but nothing has been confirmed yet.

From a neurological standpoint the day was eventful as well. First the neurologist decided to clamp off the EVD to monitor how well Harper is handling the fluid in her brain on her own before they made a decision about removing the tube. Then in the afternoon they came in to change the dressing around her tube, only to discover that there was no suture closing the area around the tube and it was leaking! This changed the plan, and they had to go ahead and pull the tube early and stitch her up, so they will be closely monitoring her head size and she will have another c/t scan today or tomorrow.

Medicine-wise… She is still on the same meds, and they are looking at adding reflux meds to her long list of drugs. They stopped the constant morphine drip, but she is still receiving doses of morphine through the day as well as the methadone to help with morphine withdrawal.

I think that covers all of yesterday… Now we’re off to see what today holds for our girl. Thanks for the prayers and encouragement!

Harper is continuing to take baby steps in the right direction… She is still on all of the same meds and assistance, but today had her first milk feeding via the feeding tube- a big step up from only IV fluids! She hasn’t shown any more signs of seizure activity and her swelling continues to decrease, and there was talk today of possibly starting to remove some of her lines throughout this week… Our girl is a tough little fighter!

What a day! Harper was not a happy girl today. She is extremely congested for some reason, and it is making it difficult for her to breathe. Because of that, she had to get checked quite a bit and had to have a chest X-ray, which she did not care for. It also caused her heart rate to be elevated most of the day, and prevented her from getting the good rest that she needs right now. They also came down a little bit more on her morphine, and she had a couple of more episodes with vomiting after feeds. All of that combined with still having a healing wound on one side of her head, an EVD drainage tube on the other side of her head, and a feeding tube in her nose made for one very unhappy baby today.

Harper also had visits from the physical therapist and the speech therapist today. PT worked some with her and said overall things looks good. They’re just continuing to work with her tight muscles in her upper body. Speech therapy came in to evaluate her readiness for bottle feeds. Unfortunately, they decided she is not quite ready- because of the time she spent on the ventilator she has lost coordination with sucking and swallowing. So, they will have to continue to work with her on those skills and she will have to continue with the feeding tube for now.

On a positive note, Harper did have another c/t scan today, and from what we understand it was good news. It appears that she has continued improvements in her ventricles and that she may be starting to absorb some of the fluid on her own… We’re still waiting on official reports from neuro, but so far it sounds very positive.

Prayer requests for tonight… Pray for rest for Harper and relief from the congestion, and also that they don’t find any major issue causing it. Also pray for a very weary mom and dad at this point- we’ve been so very blessed and have no reason to complain with all of the support we have, but it is draining to spend so much time watching your baby struggle and to be away from home and our other babies for so long. Thanks for the prayers, love to all!

It’s Harper’s three-week birthday today! In three weeks of life our girl has endured three brain surgeries (the first of which nearly took her from us), numerous c/t scans and X-rays, countless procedures and tubes and needles, feeding tubes, ventilators, multiple blood and plasma transfusions, countless medications, and visits from nurses, doctors, surgeons, therapists, and anyone else here at Duke (or so it feels, anyway). Yet through it all, she has managed to make us laugh and smile and has won the hearts of many special nurses and doctors who come in regularly just to visit our little miracle. God is already using this angel in mighty ways!

Today Harper was supposed to have a visit from the speech therapist to start bottle feeds, but she continued to have issues with vomiting after her feeds so they had to make some adjustments to her feeding schedule instead to see how she tolerates smaller amounts more frequently. She has started to show that feisty temper of hers and managed to rip two feeding tubes out of her nose today! She’s been taking down a little more on her morphine drip this afternoon, and this evening they increased the pressure on her EVD, bringing us a little closer to possibly having it removed. Praying that all continues smoothly overnight!

Today ends our third weekend at Duke. We had a great time having all of our girls in one place again! Harper is still stable. Her EVD drainage is slowing down and her feeds have increased, but she is struggling with the morphine wean. She was very irritable and started vomiting after her feeds, so they’ve had to implement another medication to help her with the morphine withdrawal since she’s been on it for pretty much her entire life at this point. We’re looking to see improvements with that in the next few days. We got to put some of her own onesies on her this weekend, held her a few times, and Mom got to change her diaper for the first time. Other than that, we’re just waiting to see what this upcoming week will hold!

Harper’s improvement continues slowly and steadily. She is visiting with her big sisters this weekend, and loves all of their attention! We talked with one of her doctors this morning, and here’s her latest update: They are continuing to increase her milk feeds and will be taking her off of the TPN today to see how she does. They are weaning her slowly off the morphine, and when she comes off completely we will have a therapist come in to start working in bottle feeds. Her latest c/t scan was good- the right side of her brain/head is improving, and while the left side still shows some bleeding, it is stable and the neuros are happy with it. They are continuing to increase the pressure on her EVD (her external shunt), and in the next two or three days they’ll make a decision about removing it and also try to decide if she’ll need the internal shunt.

That about sums it up… On a non-medical note, we got to see her in a onesie yesterday! It was exciting for this mama to see her girl with clothes on for a change. 🙂

Another great day today… Everything is still nice and stable, meds are slowly decreasing, feeds have been restarted successfully through the feeding tube, and we had our first physical therapy session today (which also went well). Harper is becoming more and more alert and attentive, and today we discovered that she loves to hear music from the music box they placed in her bed. We’re thrilled to have nothing but good news!

There are no words to describe the incredible day we experienced today! Harper’s swelling is down, she was wide awake and alert, and she came off the ventilator today. To top it all off, we got to hold her today… It was mom’s first time holding her since she was flown out of Wilmington 16 days ago, and dad’s first time since her first surgery. She was so happy to be swaddled and held and vent-free… Even the nurse referred to her as a miracle baby. God has been so very faithful, and we are so grateful to Him and to all of you for praying so fervently on Harper’s behalf!

Harper had an amazing day after her surgery this morning… She was such a trooper with all they had to put her through. This afternoon they were able to remove the FEM line from her leg and the other arterial line from her wrist, so we were so happy to see her free from that! They’ve cut her ventilator back to the bare minimum, and are looking to remove the breathing tube tomorrow. She will also have a c/t scan to check on the new tube and an abdominal x-ray to check on her digestive system tomorrow. Lots of progress for one day, looking forward to more blessings tomorrow!