Tuesday, 25 September 2012

Fluid is Not our Friend

It's lunch time on Tuesday, Hope was cleared to go on pass over 2 hours ago. Unfortunately, we're waiting for a consult from GI and have yet to see them.  They said they would be right up over an hour ago.  At least we'll be at the house for dinner to spend some time with the family.  Doctors get called away all the time and aren't usually able to make it as quickly as they'd hoped.

Hope's PICC line procedure has been booked for Thursday this week.  No official time yet, but please begin to pray that they'll be able to get it in her left arm.  We don't want to risk clotting off her right arm and are going to ask that it's put into the left arm again.  This is very complicated with the clotting that is already there and will take a very talented surgeon, lots of prayer and a miracle!

I was reminded by the cardiologist again this morning that Hope's hernia surgery is going to be far from routine.  Although it is one of the most common general surgeries, they fear that Hope will have a lot of complications.  The surgeon will make a cut in the groin area.  This is so close to the fluid in the abdomen and could cause some serious drainage.  They're not sure how they'll stop it and it will make the healing process much more complicated.  Please pray for this upcoming surgery and that Hope will defy the odds and come through without complications.

Hope's abdomen has been hovering around 47cm for the last few days.  Her weight goes up and down, but always ends up at the same spot in the end.  They put her back on the high calorie concentration of breast milk and formula today.  She appears to be tolerating it well and even seems happier to have the extra calories in her tummy.  Tomorrow they will try taking her off continuous feeds and will begin giving her larger amounts in one shot.  It's frustrating to work so hard to get her feeding normally.  I know that on Thursday they'll stop feeding her before the PICC line.  On Monday they'll stop feeding her for the hernia surgery and we'll have to start over again!  Some days I struggle to believe this little girl will ever eat without a feeding tube.

We've now been in Edmonton for 4 weeks, and in hospital for 6 weeks.  It's hard to think about the fact that we haven't even started the surgeries yet.  I know this is going to be a long journey and I pray I have the emotional energy and physical strength to get through it.  We're still not even sure that Dr. Ross will agree to do the heart surgery after Hope heals from the hernia repair.  We need a lot of prayer in this area.  We are not comfortable taking Hope home in her current condition.  She is at the proper age and weight for her Glenn (second surgery) and we don't want to wait until she is more unstable to have it.  If they discharge us from the hospital here and refuse to operate at this point, we're not sure what to do.  Please pray for wisdom and strength as we fight for the best care for Hope.  Pray specifically for Dr. Ross, that he would make a decision that is best for Hope and not for any other reason.  I could use an extra dose of patience too!  I'm not sure how many times I can eat a sub for lunch! (Mr. Sub is downstairs in the hospital)

Thank you for caring and taking the time to follow along.  Our little girl is only 12 pounds and yet we know her impact far outweighs her!  I strongly desire for her to grow up and have the opportunity to share with others about her life.  I pray that is God's plan for her life too.


  1. I'm praying with you for smooth road ahead. Your mom's comment the journey is long immediately brought the old Hollies? tune into my head. "The road is long, with many a winding turn that leads us to who knows where. But the road doesn't weigh me down at all. He ain't heavy. He's my brother." Amy, you're my sister! God bless you as you travel the road God is taking all of you on. I just feel so confident about Hope. And she looks so content. Imagine how much more so when this is all behind her! xoxo

  2. There is so much prayer going on for you. Today, my 5-year-old son Isaac said he prays for Hope every day in school during their prayer time. Y'all are constantly in our prayers!

  3. Dear Amy, I think of your sweet little Hope many times throughout the day and will be praying very specifically this Thursday while she is getting her PICC line put in. Praying for you Amy as you fight for the best care for Hope. You are an amazing young woman and have been through so much with your little daughter. Her little life has been teaching so many of us about faith and hope in our Father as we continue to come before Him on her behalf. May God give you strength and peace as you continue to care for your litle girl and may He bring some special blessings along to remind you how much you are loved by Him.