Tuesday, 5 March 2013

Perking Up

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.


  1. Rachelle was a wonderful, special gift from the Lord and He must have amazing plans for her moving forward. He also must have the perfect replacement for her or he wouldn't even think of letting her go! "Nursey" truly was the best nurse for the first round of care for Hope and for you Amy. You will be forever friends:)

  2. Have you thought about bringing in a homeopathic doctor to look into some herbs etc to help fight off the viruses/bacteria and help with Hope's immune system? Sometimes I think although the medical field does their best to 'help' our bodies with antibiotics etc...it does more harm than good especially with an already compromised immune system. Just a thought. I continue to check your blog for updates and pray that one day your sweet baby girl with join your family at home, healthy and smiling!

  3. Amy, you are the strongest person in the whole wide world. I don't understand your level of faith but I am grateful to witness God's power in your life and Hope's too. You are an incredible mother, there are so many lives being changed by your ability to hold on to hope despite the odds and the countless hardships. God is so good.
    My grandmothers best friend told me a story that made a difference in my life. She said that her and her husband started fighting 3 months into their marriage. The fighting got worse and worse, numbness, ignoring, silence, yelling and eventually pretty much not even liking each other. After ten years, one massive fight ended with them determining, it just wasn't worth it. Their marriage wasn't worth fighting for anymore and despite the disappointment and scorn they would feel from others, it seemed it was better to walk away than to stay. And here's what she said next "if I would have left then, I would have missed out on the best 40 years of my life!!!"
    This stroy has been very important to me because it has shown me that some things in this life are REALLY worth fighting for, no matter how dismal they may seem and that some times, just when it seems like there's no hope, there's deliverance planned for the next corner turned.
    Keep fighting. Keep fighting for your Hope's life! We are all praying, we are all in your corner, it may seem overwhelming at times but I'm praying that one day you're able to say "if I'd given up hope then, I would have missed out on the best 60 years of my life with Hope!"
    Praying deliverance is planned for just around the corner!
    With love!

  4. Well Amy,that GI doctor "clearly doesn't realize" that God can do immeasurably more than we can ask or imagine! I stand with you
    in believing for a miracle for Hope! In fact, I'm going to start making a little quilt to put in that crib you lowered the mattress in:)

  5. Your family stories have touched my heart. I have children of my own, and they both have health problems. Just not as severe as Hope. Its truly sad to hear that Hope has them rotavirus. My oldest had it at their age of 2. It is a nasty virus. God has a blessing for your family just keep trusting and believing in him. As for they nursery part; I think you have to have hope and a positive attitude to get through all this. Doctors don't seem to understand that we as parents understand the severity of situations we aren't dumbfounded! But if they expect a parent to keep their sanity through all this, then they need to let that parent have them positveness of knowing or feeling one day their little one will come home. Just keep up your faith and doing what your doing! Because your doing wonderful so far!

  6. i have read your blog for some time, keep fighting for your little girl. I have posted this comment on a friends wall, she is an undergrad nurse and might be that perfect person for you.