When we hit a set back, I would expect myself to stop preparing for Hope to come home. Last night I worked away at getting her nursery ready for her to come back. I even had Shawn lower her crib mattress to properly fit her age. It's as if I refuse to accept this as a set back and felt that preparing for her to come home would make it happen.
This morning Hope was extremely grumpy, but more alert. By the end of the day she was much less grumpy and more content. She is not back to her happy self, but is clearly feeling better than yesterday. Her stool sample came back positive for Rotavirus. At first I thought that was great, it meant she was not intolerant to her feeds. This was short lived as the doctors were very concerned and not thrilled with this diagnosis. The level of diarrhea that is often associated with Rotavirus is very dangerous for a baby that is so sensitive to fluid balance. Please pray that Hope will not have extreme diarrhea and that her body would stay hydrated. This afternoon her heart rate was very high and she had to be given a bolus (large amount at one time) of fluid to bring it down.
There is no treatment for Rotavirus and Hope will continue to be watched. She will remain on antibiotics until her blood tests come back, just in case there is more going on. The GI doctors are not convinced that Rotavirus is the only thing going on. They don't have a better answer, but were skeptical that this was the entire picture. I am praying they are wrong. They are still lacking an explanation for the bile in Hope's stomach. There is still a worry that she has a problem in her bowels and she may go through further testing if things do not resolve quickly. Today her X-ray looked better and they decided to hold off on further testing in hopes that things will continue to resolve on their own. Please join us in praying that this is true and Hope perks up quickly.
Hope will not be able to take in any feeds until her symptoms are gone. Once this happens, there is a chance we'll be introducing her to breast milk with the fat included. This would be great as we'd have more milk if we didn't need to remove the fat. If Hope could tolerate these feeds, we could get her off TPN and hopefully home.
Today the doctor asked if we needed to sit down and discuss the seriousness of Hope's condition. I declined the offer and let her know that we are aware of how serious Hope's condition is. Apparently one of the doctors on GI felt that we clearly didn't realize how sick Hope was if we wanted to bring her home. We are aware that she's not a healthy average baby girl. We are capable of caring for her and want our family under one roof, even if we end up back in hospital later.
Another challenge we're currently facing is the loss of our home care nurse. Rachelle has been a great blessing to our family and so good with Hope. In a couple of weeks she will be moving away and we'll have to fill some pretty big shoes. It's not an easy job to hire someone as we're looking for someone that wants night shifts. They are able to sleep through a large majority of the shift if Hope is stable and would be able to have a day job or get things done. Ideally I'd like to find a nursing student in 4th year or a nurse that wants to work but couldn't find something that worked for their family. Please pray that we'll find a perfect fit and get things figured out quickly. Please also pray for Rachelle as she makes a huge transition in her life. She will be missed.