In summary:
-She slept great last night! She did not wake up fussing like she did on our last night in the PICU. We have to wake her for the nurse to get her vitals every 4 hours and to feed her, but other than that, she (and we!) rested well.
-Last night at 12:30, our nurse came in and said it was no longer in the orders for Evin to be continuously hooked up to a pulse oximeter. It was a little nerve wracking, but she said that if we were OK with it, she would unhook her and just do spot checks when she takes her vitals every 4 hours. We agreed. Every time her sats have been checked they have been above 95. Several times they have been 99 or 100! It is just amazing to me that she went from a sick little girl with a broken heart, to now having oxygen saturation of 100%!
Looking like a normal baby and like she would be so easy to pick up and hold...wrong! She still has the sticky leads all over her chest which are attached to a portable monitor. She also has a pad covering her incision that is taped right under her neck. She has a bandage covering her chest tube site that we hope will come off tomorrow. Lastly, she has the IV in her foot, which of course is attached to an IV drip.
-This morning the cardiologist came in to check on Evin. He said that Evin looked and sounded great, and he was happy to hear that she had a bowel movement.
Sidenote- she has had SEVERAL large poopy diapers since last night. I'm telling you, prayers were answered when it came to poopy diapers. Mitch and I were joking and saying that maybe we prayed a little TOO hard for poop.
-A chest x-ray is scheduled for tomorrow, and we are hoping the fluid has really cleared out.
-This morning Evin was pretty fussy, and it took a little time for us to figure out why. It is difficult when your baby has SO many different reasons to be fussy- her incision could hurt, her IV could be uncomfortable, her chest tube site could be sore, her skin could hurt from where her central line got irritated...the list goes on and on! We were able to figure out today that she was fussy from a belly ache. Little E had some pretty bad gas in her tummy, so we started giving her baby Gas-X and it has made a huge difference! Each time after she took it she was happy, smiling and in a great mood.
At one point this morning Mitch was patting her booty, and I was patting her tummy in order to ease her belly ache.
Shortly after, she got the baby Gas-X, and was all smiles!
-The cardiologist said that Evin is doing well in all areas, and that we just need to get her eating more. She still has an IV in her foot with a minimal amount of continuos fluids running through it and she will have to be eating better in order for them to take this out. As with everything in medicine, it is a tricky balance of leaving her on the IV to make sure she is getting the nutrition she needs, but also getting her hungry enough to take a bottle. I think she might be feeling sufficiently full and hydrated from the IV, so this is making her less interested in taking a bottle. Evin isn't crazy about eating in the first place, and I think the IV adds to that. She will have to be eating a little bit better than she is in order for them to remove the IV. Also, he wants to get her to take at least a couple of 3-4 ounce bottles each day before they will send us home.
-One of the more difficult parts of our day comes when we need to give Evin medicine. We probably have to do this about 8-10 times a day between her pain management meds, her diuretic, and the gas-x. The little chick had gotten to where she would easily take her meds at home if we used the pacifier to distract her. We would just slide the syringe in behind the paci and squeeze a little in at a time as she was sucking on it. This no longer works AT ALL, and she refuses the pacifier and the syringe when she knows what is about to happen. It takes both of us to hold her head still in order to get the syringe in, and even with 2 of us, she sometimes spits some of the medicine out. Not fun, not fun at all.
-So far today Evin has taken about 10 ounces, where pre-surgery at home she was taking 20-23 ounces each day. We are praying that this increases each day so we can work our way back up to where we were. She did take a 3 ounce bottle this evening and we were rather pleased! Baby steps!
SO happy this afternoon/evening!
Overall, I feel like we made a few steps in the right direction today. I was extremely glad that Evin was smiling, laughing, and showing many signs of feeling better today. We are praying that her appetite continues to grow so we can get a few more ounces in her each day. We are also praying that she continues to stay comfortable on minimal pain meds.
Tuckered out after a long day.
Thank you for your prayers and concern for Evin. She truly is such a blessing, a little miracle baby! Your prayers mean the world to us; please keep them coming!
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