Saturday, 7 April 2012

A Night of Tears

This morning we went into the NICU just before 9am and were told that Hope had cried most of the night.  They told us that she does a lot better while we're there and seems to really notice when we're gone.  Thankfully we had the same amazing nurse, two days in a row, and she spent a lot of time holding her and showing her that she's loved even when we're not around.  Today we tried to take breaks throughout the day more and stay later at the hospital to be sure she wasn't left for quite as long at night.  She spent most of the day asleep in our arms, exhausted from her night of tears.

We have Sadie back at the Ronald McDonald house with us for the next few days.  It makes everything more difficult, but we know that while she's gone we'll miss her like crazy and need to work around the crazy schedule to spend as much time with her as we can.  It's really hard to split your time between the two girls, tomorrow morning I'll be at the hospital while Shawn does an Easter egg hunt with Sadie.  I hate to miss those things but need to be in the NICU for the doctors rounds to get the information for the day on Hope.

We were told today that the surgery has been planned for Wednesday, but there is a chance she would be bumped because she's very stable and not in critical condition currently.  This is great news, the wait is hard but we're happy to be parents of the boring, stable baby!  We feel a real time crunch now to get as many snuggles with our little girl as possible.  After surgery it will be quite some time before we're able to hold her again and want to get all the time we can beforehand.

I'm feeling extremely tired and my body is really feeling the lack of sleep.  My legs are swollen to the point of being disgusting and hurting as I walk.  I've had a headache since I delivered that I can't seem to get rid of and I find I sleep terribly every night as I struggle to fall back asleep after pumping.  We're looking into having a form signed that will allow my mom to receive medical information about Hope on our behalf.  This would allow us to sleep in one morning and not be rushing to the hospital for 9am rounds.  She would have to leave the NICU while the other families were briefed in rounds around us, but would be able to receive the important information on Hope and pass it along to us.  We're hoping this works as I don't know how much longer I can carry on this way and afternoon naps seem to be difficult for me.

For any men that don't want too much can skip this section...
My milk supply has now come in and is making it less tedious to pump, but it takes more work at night as I have to leave our room and go put the milk in the freezer after pumping and disinfect all the pump parts to get ready for the next pumping.  They don't want Hope to receive any food yet, but want to make sure we give her a chance to learn how to latch.  This has not been going well so far, they are having me pump off the milk and then try to latch her when we know she won't get too much food.  Today they had me try this with a nipple shield on to feel more like her soother.  It was slightly more effective but we couldn't get her to really suck, please pray this improves and she learns to feed.  If we can have her feeding well after surgery, it will decrease the time we're in the hospital by a great deal.

Some specific prayer points:
* Pray for a balance as we have Sadie over the next few days, we want to enjoy the time with her and cherish those moments with Hope before surgery.
* Pray for strength and health for us all, I have to remind myself that I'm feeling so disgusting because I just had a baby, 3 days ago!
* Pray that Hope won't have to be on the heart and lung bypass machine for long during surgery.  This is the most dangerous time in surgery.  It is also the most dangerous for Hope because of her very small aorta, it will cause trouble for the surgeon and could result in her being on the machine longer.
* Pray that Hope continues to be stable and remains the boring baby in the NICU.  We are truly blessed that she is tolerating the medications well and is not on a respirator, this allows us to hold her a lot more.

Thanks for caring and continuing to lift us up.  We totally see evidence of the prayer that surrounds us and our precious Hope.  We go into this Easter with a new perspective on the hope we have in Jesus as we look at our little girl each day.  Happy Easter everyone.


  1. Oh Amy, I feel your pain! It is so difficult to not be able to "fully" be the mom you so desperately want to be - to soothe your baby. Maisy (our third baby) had difficulty during labor and had to be intubated and all the fun stuff that goes along with that for 2 days after she was born - no holding allowed. We were barely allowed to touch her. It was so difficult, and yet our time with that situation is so minimal compared to yours. You are in my prayers and thoughts continually.

  2. Amy- so happy you are getting lots of cuddles before surgery. Great idea to have your mom there to receive medical info. It is so difficult splitting time to be with Sadie. It produced so much guilt in me- the Lord will use others when you can't be there to bless & love on Sadie. These days are so very hard, but continue to hold on to God- he will carry you both when you are so exhausted. Sleep when you can. Another thought- we had an amazing team at Sick kids- is there a nurse practitioner that can be there to relay any information to you that the doctors discuss? That helped us to speak to our NP and social worker if we were not available for rounds. As hard as it is- take care of yourselves with lots of rest & food!
    We are praying for you all.
    Looking back over these difficult 2 yrs, we can't believe the strength we were given to cope. We thank God for every moment we have with Sloane.
    Luv u!!

  3. I'm a total stranger to you...somehow I stumbled upon your blog through a friend's FB post. I read your entire blog start to finish, bawling my way through. You touched my mohter's heart to the core. I have prayed for your family every day since I have been following you. A word f encouragement from a sounds like you are being a Super Mom to both your girls! You can do it! He will do it for you when you can't!
    Just another little thought....I am also a L&D nurse....and I picked up on the fact that you have had a headache since delivery. Likely this is due to exhaustion and all your many emotions, etc. But, the biggest side effect from an epidural is a "spinal headache.". This is something that can be fixed...and I wouldn't want you to continue on in pain if you didn't have to.
    Keeping you in my prayers!

  4. Praising God for the little things in life that have encouraged you. God is with you, Hope is here, and He is our HOPE!! How awesome to see you holding your little girl, and see you with both of your daughters. You look amazing, but as I read, I know you are in pain. Praying for you Amy, and you heal, get some rest, and be a mom to your little Sadie!
    Am so glad that your Mom is there too. You are being prayed for by a lot of us in our church. God is truly with you, and yes I cry when I read your blogs, as I sence God's presence and love in your words.
    My heart hurts for what you are going through, yet God will be proven Faithful!!! He is an AWESOME GOD!!! Looking forward to hearing more news on this little angel that is boring in the NICU.....Love you and keeping you all in my prayers!