The light at the end of the tunnel

Getting ready for my CICU graduation!  I was all dressed up when she got there.

As I sit gratefully in our non-CICU room snuggling with my sweet baby, the proverbial light at the end of the tunnel is starting to shine brighter and brighter.  We are not currently attached to any machines, and there is only one feeding tube still attached to her body, the only tube keeping us here at Children's.  We're almost home.

We have had a busy week and I apologize for not updating everybody sooner.  

Lounging in the CICU on Wednesday, 14 days post-op.  Still pretty drugged up.

The biggest change is that we have officially graduated from the Cardiac ICU, and hopefully we will not go back there for a while and that our next visit there is brief.  We were there for 14 full days.  We expected to be there 5-7.  As everyone told us, this was a huge surgery for a very tiny baby.  Had she been much smaller, they may not have been able to do this surgery and would have had to do something more temporary, or we would have had to stay in the hospital while she grew bigger.  Thursday was the big day.  The big requirements for leaving CICU were to get off of morphine and off the cpap.  Her morphine was weaned last weekend and she got off the cpap Tuesday night.  She was ready to move on Wednesday, but the attending doctor, who is very conservative, wanted to observe her one more day.  Tuesday, there was a slight scare that she may have been withdrawing from the sedatives, but fortunately that was not the case.  

13 days post-op

We started to try to feed her with a bottle on Wednesday, but because her recovery is so slow, we are also feeding her through the NG tube.  They have slowly been increasing the calories to get some weight back on her.  Thursday was her graduation day and she got all dressed up.  

All dressed up.  15 days post-op and moving out of CICU

Hanging out with mommy waiting to move out of CICU

All my supplies (look at all that milk mommy made for me!) and my chariot that will take me out of CICU

Since we moved, we've been settling into the routine here.  Life is very different in transition.  The CICU nurses have total control over what happens with her care, and we have input, but ultimately everything that happens is their decision. They even have more say than the drs in many cases.  Over here, we are much more in control.  We change diapers, we call for bottles, we can take her for walks and field trips.  

17 days post-op.  Just after trying to eat.

The big task while we are here is to get Hope to start eating.  This has been a slow and somewhat frustrating task.  Because she was so young and the surgery was so big, she sort of forgot how to eat.  In addition, because she went 10 days without food and then didn't get much when she started to get fed again, she had lost a lot of weight and had no energy.  Lastly, she was on heavy-duty sedatives which made her very sleepy.  The sedatives have finally been lifted - she took her last dose of attavan on Thursday and her last dose of methadone last night.  She is starting to put weight back on.  The last piece of the puzzle, getting the coordination of the suck/swallow routine down, seems to be coming in to place.  

Today was a very good day.  The sedatives that were making her so sleepy are starting to really wear off, so she is now awake and alert far more often.  I got in just in time for her 8AM feeding.  She was wide awake and looking very alert.  She took about 7mLs, which doesn't sound like much, but she was showing interest and got a few good suck-swallows in, so I was encouraged.  She feeds every three  hours, so we hung out for a bit, I had some breakfast, then pumped.  While I was pumping, I gave her some skin-to-skin time, then decided to try nursing.  She did pretty well for not having nursed in three weeks.  She latched and suckled a little bit.  During the 11:00 feed, the feeing team came in to help her feed.  She showed a lot of interest, but was pretty tired from nursing, so only took 4mLs.  Again, there were some good suck-swallows, so we were encouraged.

Selfie with Mommy as she lets me snuggle skin-to-skin under a blanket 

I went home to get Chris after the 11:00 feed, and to walk Sanders.  Chris drove back in and I ran in.  This was the longest run I've done in probably 6 months.  I managed 7 miles and the pace was even decent - 9:20s.  Starting to really feel like myself.  

But the best part of the day was the 2:00 feeding.  Her uncle Rob came to visit and she decided to show off and take almost a whole bottle, 31mLs!  

Hanging out with Uncle Rob after eating almost a whole bottle

At 5, I nursed her a little bit, and then she once again took 30+ mLs.  We feel like she might be finally getting it down!

We are happy to accept visitors at this point, and can't wait for everyone to meet Hope.  If you visit, we ask you to keep visits to around an hour at most - I get tired and overwhelmed, but I am really happy to see people.  She had her first post surgery visitor on Friday.  We went on a lunch date to the cafeteria with my friend Carrie-Anne.

Field trip to the cafe!

With every feeding, she's getting closer and closer to home.  I'd like to think we'll be home Tuesday or Wednesday, but definitely by the end of the week.  We will keep you posted - hopefully this is a big week!

Sanders hanging out with me in the Nursery.  Waiting for Hope to come home.