We’ve seen better days

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!

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