More food in NICU 2

Now that we have been here for so long, we have definitely developed a comfortable daily routine.  Rex and I typically come up to the hospital for a few hours each morning (7:30 to 11am) then my mom comes up (11 to 2) while we go back to the apartment to eat or rest.  At about 2 we return and stay until shift change at 7 and then my mom comes back from 7:30pm to 11pm.  It is a long day, but I really think that our being there with her so often played a huge role in her surprisingly quick recovery.  Even when she was sedated on ECMO we would spend all day every day talking to her about home, reading to her, and playing YouTube videos or music for her.  Sometimes she would even FaceTime with family members who couldn't be here!  This routine has been great and allowed us all to spend a great deal of time with her, while also having some downtime away from the hospital beeps, monitors, and stress.

That being said, now that she is breastfeeding (and my mom is going home tomorrow) our scheduled routine has been forced to change.  We started out nursing/bottle feeding with scheduled feedings every three hours (8, 11, 2, and 5...am and pm).  However, even though she was keeping everything down, she wasn't gaining weight.  She should gain about 30 grams a day, but she was only gaining 1 to 3 grams.

After a couple frustrating days of trying to get her on their schedule, she was still having very little weight gain.  The nurse practitioner decided that I should begin nursing on demand.  I was so happy to hear this plan because I knew it would be better for Makenna and I to fall into our own natural routine; however, for now on demand feeding is proving to be difficult.  It is hard to do on demand feeding when you don't live with your baby just yet!  I think in order to truly make it work I will literally need to move into the NICU!  But bottles are a great invention and we are taking full advantage of them at night!  This new method seems to be working wonders!  The first day I spent 11 hours in the NICU feeding roughly every two hours on demand and I'm happy to report that she gained 26 grams!  The next day we did the same and she gained 55 grams!

Now that we have figured out the secret to successful weight gain, I know it won't be long before we go home!  In fact, they lowered her oxygen to 100 on the 14th and moved her to the NICU 2.  This is the step down unit designed for babies who need less intensive care or are about ready to leave.  This unit is much more noisy because the babies here aren't ventilated (they can cry).  Most of them were born premature or had surgery and simply need more time to get big enough to go home.  There are also more babies closer together and the nurses each care for 4 babies instead of just 2.  I must say I miss our quiet semi-private room, but I am so excited that this means she is getting better!

In preparation for discharge she also had an echocardiogram, lung x-rays, a hearing test, and an MRI of her brain.   I know these are just standard tests used to gain a full picture of her CDH and how her body responded to treatment, but it is still a littlr nerve-wrecking!  Before going on ECMO her o2 stats did dropped into the 40's and it happened again during surgery, so that coupled with the fact she was on ECMO for 9 days puts her more at risk for brain, hearing, vision, lung, and heart damage.  This makes me a little nervous for the results; however, she looks amazing, so I am not too worried.  We should meet with the pediatric surgeons and their team sometime this week to get official reports of their findings and discuss her needs for home.

Other than that Makenna, Rex, and I will just be hanging out in NICU 2 watching her eat up a storm for the next few days!  It won't be long now!