Thursday, 26 April 2012

It must be easier to be a man...

If you've ever read the book, 'Alexander and the Terrible No Good Very Bad Day', then you have a good idea of how parts of my day played out.  I hate to complain, because Hope had a good day, but seriously?

Shawn and I went to the hospital together this morning.  I went to the IV clinic and he went up to the NICU.  I planned to go up and sit with him when I was finished.  I first went to see the doctor again and was told that my blood cultures came back and I have a staff infection, on top of the mastitis.  They took new cultures today and we'll find out on Saturday if the antibiotics have taken care of the staff infection, since they don't seem to be doing much for the mastitis.

After this, I went over to the IV room and they started my meds.  It was hurting almost immediately but I didn't want to be the wimpy girl that whines about her IV.  When I actually started to cry, I decided to wave over a nurse.  She looked at my arm, gasped, and then told me I'd have to scream through what she was about to do.  She then pushed hard against the ball that had formed under my skin and painfully pushed all the fluid back up the IV line.  Once she was finished with her torture treatment, she explained that the IV had fallen out of my vein and they had pumped the meds into my tissue instead.  They then took out the line, restarted it in my other arm and began the infusion again.

By the time I was finished, Shawn had already headed out for work and I was at the end of my rope and ready to sit in a corner and cry for a few hours.  Since the hospital floor is a little 'unclean', I decided to go upstairs and sit with Hope instead.  Thankfully, both of my infections are not contagious and it's completely safe for me to be in the NICU with Hope.

Rounds started late today, so I was able to be there for the rounds and get the update on Hope.  They have decided that Hope likely does not have an infection in the stomach, but they won't know for sure until the cultures are back tomorrow.  They feel that the blood and such were likely from her nose, swallowed after her breathing tube was removed.  They have restarted her feeds through the feeding tube, at this point, but she's only receiving 1ml an hour.  They have to be very careful when feeding an HLHS baby as their stomachs do not receive a lot of blood, and the blood it does receive is not the good blood in the body, as it will always go to the most important organs first.  There is a high risk of infection and they are extremely cautious.

We did have a good step forward with Hope as they weaned her off her last heart medication!  She is no longer being assisted by any heart medications directly, even though she's on a lot of medications still!  She is still retaining a lot of fluid that they continue to work at getting it off her little body.  We're hoping these will come off soon and she'll be a bit less puffy.  She slept most of the morning while I was with her so I didn't pick her up and disturb her.  We are careful not to move her too often as the incision is still very tender.  As a result, we only move her every few hours and don't pass her back and forth at all.

In the afternoon, while I was in the NICU, I realized my "new" IV line must have been failing because I was feeling very uncomfortable.  I had to go back down to the outpatient clinic, wait to be seen and have the line pulled.  Not sure what will happen tomorrow when I go for my IV infusion, I'm guessing they'll start an IV all over again if I can't convince them to put me on oral med.  The IV meds don't seem to be doing anything fantastic for me anyway.  I'm trying to get into a lactation doctor but don't have an appointment until Tuesday.  The antibiotic I'm currently on gives me terrible headaches that start after the infusion and get worse all day until I feel horrible at night and get to go to sleep.  Please pray they listen to my pleas and do something more "user friendly".

I received some more Hope notes today!   It's one of the highlights of my day and it's not too late to send one if you haven't yet!  I look forward to showing them all to Hope and being able to document the army that prayed for her as she grew, inside the womb and out.  My prayer request for Hope is that she would progress in her post surgery healing and get us back to Calgary.  My personal request is for complete healing, I feel really attacked and broken right now.  I'm losing my mind as far as my health is concerned and need some relief quickly.   You don't realize how much you can take, until you keep getting more put on you and you don't fall over by some miracle!


  1. Tamara Greenway26 April 2012 at 21:54

    I feel SO badly for definitely have things much worse than I did, but I can appreciate the frustration of being ill while you are needed to comfort your child. When Camille had her open heart surgery I came down with a horrible chest cold, and no one in the children's hospital would treat me, so I had to go for 3 days with no antibiotics. Thank heavens they still let me stay with her - protective mask and all :( I'm so glad you are able to be in the same hospital as your little lamb...

  2. Amy, I just pray that you would be completely healed! I pray that you would get lots of rest and renewed strength in the midst of what seems like a storm. I pray that your family would feel God's presence daily and moments of joy would happen. I ask you you would be encouraged by the Lord and from all of us who are behind you. You are an amazing woman and love your love for Hope. She is so loved. God loves her more than you could ever love her. I pray that you would know that He is going to carry you all through this. We ask for more sweet moments with Hope as you hold her. That she would know that you are so near and that you love her so much. We continue to ask for healing for Hope and that she would be able to look back years from now and know what a miracle she is! We love you and continue to lift you up daily in our prayers. We will send our note sometime this weekend! Love you Amy!

    Ashley Cordy

  3. Hey there -
    We're so glad to hear that Hope is doing better - the power of prayer is an amazing thing to witness!! Hopefully you will feel better soon, Amy. We're praying for you too! That whole new-mom thing with hormones, illness in you and baby are all very difficult to handle, individually - let alone all together!! I didn't have that happen to me, however, I did have an intra-uteral infection... again, not fun at all!! You'll get through this, just like you've been getting through the rest of this roller coaster ride - and you'll say to yourself in a year or so - I can't believe we got through that!! If you need to cry - do it! Its theraputic - and continue to do what you're doing - care for you, and spend time with your little ones...
    Wishing you all the best today, and I hope that you all make some more progress today!!
    Hugs & Prayers!!
    Tina (from PEI)

  4. Hi, I feel for you and your family for all the difficult things you are going through. Just remember that Baby Hope will need a strong Mommy and Daddy to help her through everything! For the mastitis, get a head of cabbage, put the leaves in the freezer then put them in your bra... it will help, trust me! I had mastitis with all four of my kids and yes you will smell like cole slaw, but there is something in the cabbage leaves that help... and the freezer just makes it feel better. Give it a try and I have hope that Hope will continue to improve every day!
    Sara Matteson (NY)

  5. Dear Amy:
    Well the good news is that you, Shawn, and Hope are in God's hands! HE has brought you all through this terrible ordeal, and will continue to do so.
    Keep you eyes on your Lord, and Savor! HE is the ONLY ONE that understands your hearts pain, and aches. HE also knows the difficulties it is to be a mom. Life isn't easy, and someday as you look back, you will see that HIS reasoning for all of this!
    I have no answers. Have gone through a lot physically too, but pain is pain!
    Know that you are being prayed for, your dear little Hope is being prayed for, and Shawn as well, as he is the DAD and prob. wants to FIX it all.
    May God be near you all, continue to heal your body, heal Hopes body, be near Shawn and give him strength to deal with all of his girls! and also be near Sadie who prob. wonders what happened??
    Yes there is so much to be thankful, and grateful for. Let's keep praying for God's best in all of your lives!
    PTL xo

  6. Oh man... I'm so sorry for what you're going through personally health wise... We did some interceding tonight for you all, and specifically for you and your health. It's time for some breakthrough and healing for you so you can direct your precious resources where you want them to go!!!! Praying for all infection to leave your body and for great success and ease with pumping and eventually nursing! Truly you are a warrior. And all these efforts to knock you down will backfire on the enemy, because it will really only make you stronger, your reliance on the Lord greater, and your resolve firmer. Let tomorrow be infinitely better! We're cheering for you and continuing in prayer for you! -Annie, Paul and Miles (sent our note yesterday!!!)