Well this was another horribly eventful weekend for Bella. She basically did the exact same thing as she did the weekend before starting on Friday, worsening (as in saturations dropped to 0) on Saturday and stabilizing on Sunday. The frustrating part from our end is that we had a totally new staff on board than the weekend before so no one is acknowledging the repeat. We are told it is her chronic lung disease and that is what we are seeing. However after really talking to our primary nurses and putting our heads together we feel like we are having some ongoing issues with her fluid retention. She has only been weighed on Monday nights so it seems to us that by Friday she has built up so much fluid around her lungs it leads to her worsened condition. We know this from the dramatic increase in her weight and her improved condition once receiving additional diuretics resulting in enormous urine output. So we have asked that she gets weighed on Mondays & Thursdays so that we can keep a closer eye on this. We are hoping to not have a repeat of last weekend again....
Bella was without food for 7 days, receiving all nutrients thru a pic line. We feel certain that she had been dealing with reflux issues and possibly aspirating. We were hoping to see an improvement in her condition by taking the food away. We did for the first few days however she was so upset with no feeds and everything else going on we didn't get a definitive answer. So the Dr started her back on full feeds today and we are monitoring closely for signs of reflux/aspiration. There is a test that can be done for this and will be eventually but she is not stable enough to do it now. She will also need surgery to get a Gtube and possibly a nissen for feedings. The ideal scenario would be to get these when she gets the trache as well but we have to see if she is stable enough to handle all of them at once.
Dr Walsh asked to start another round of steroids on her, possibly continuing at a small dose for extended amount of time. He tells us that in the studies they have done the side effects are limited for a baby Bella's age. He says that developmental delays and such are not a concern. The concern is that it will stunt her growth while on them so they will have to pay extra attention to nutrition and weight gain. The benefits outweight the negatives at this point. We started her on them early Sunday a.m. and seeing great results so far.
Today she has been between 55-65% oxygen with sats in 80-90s. We are praying to continue weaning her this week and keeping her this way. From our end we have a checklist of things that have happened in the past that have taken us backwards and we will be following up daily in regards to anything we may see. We are prayerful that some TLC, attention to detail and the Lord's guidance will get us to where we want to be.
Her primary nurses continue to amaze us with their skill, genuine love and experience. We just need to find more of them. We have had to ask that a few nurses not take care of Bella lately. She is very high maintenance and without the experience of dealing with a chronic baby like her many nurses are not a good fit. We are praying that the Lord sends a few more experienced and willing ones into our life.
If it is God's will then this will be a week of change! We continue with prayer and more love than we have ever known. We are embracing the holiday season and all that it means. We wish the same for all of you!
Much love to you all
Telisha
May God Reach down into Bella's body and heal her . May he wrap his loving arms around her entire family and keep them strong. Please Father rid Bella,s body of excess fluids, Turn her path into one of comfort, love and joy but most of all one of complete healing. Guide her care takers each day in the ways you want them to go in the care of your angel Bella. Keep her o2 sats where they are suppose to be, Make all her weight gain positive, Give her the nutrition she needs for her body to heal as she has so much to teach this world of your love and miracles. She is your shining example of your all mighty and powerful Love. Let this be the week of good changes for Bella. In your precious name we humbly pray Amen... God Bless Bella and her family and God Bless all whom you allow to have a hand in her care. God bless the little children....
ReplyDeleteIt's odd to me that they are weighing her so infrequently. Becca was weighed every night (all 123 of them!) but only measured (length) once a week. Maybe that's because weight gain and size was such a big issue for her when it's not for chunky Miss Bella. :) But - they reason I mention that is to say that the staff are in the habit of weighing some babies every night, so unless there is a reason they don't want to bother Bella with it that much, it can be done. Hope you find some more perfect primaries. It's so hard to have to switch around all the time. Sadly, many of our primaries have left the NICU!
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