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 information...you 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.