Days 5, 6, & 7
Day 5 – Saturday
Evan was definitely starting to feel more like himself. He was much more smiley today and I think he likes having his own room too. There is no other baby around to take away any attention, but really how could you not keep all of your attention on him? He is so dang cute. I couldn’t help myself and I went back to Elephant Ears and bought Evy some BabyLegs and a kimono onesie (which he promptly spit up on). We are still working on upping his feeds. He is being fed continuously but is not up to our pre-surgery volume which made it all the more surprising that he spit up. Maybe that was because we were fussing with him tho?
We are also still working on getting Evy off of the cannula. He hates the dang thing and puts up a big fuss when you try to adjust it on him. Can’t blame him tho. He still needs oxygen because is sats are still dipping too much. He was low to mid 80s after the Norwood and now he is in the mid 70s. Sometimes it will just drop to like 53 or so for a touch and then bounce up to the 64-66 range and hang out there for a good 30 minutes. You can also tell something is up because he will look more blue especially in his face. So the nurses will fuss and put him on the cannula if he wasn’t already on it.
Will and I went to dinner with Kim and Brian and it is so nice to be able to talk to people without having to explain everything. In fact, they had a much more arduous path and are teaching us. Anyway, when we left Evan we rigged up a Boppy and had him sitting in his bed watching a movie. I was hoping he would do well when we were away but you never know what you are going to get. When we got back his nurse gushed over him and how awesome and cute he is. She said she had dinner with him and even took him for a walk in the hospital stroller. Evan the charmer!
Day 6 – Sunday
Another day on the floor and another day of feeling better and looking good. We are definitely looking to discharge tomorrow unless something weird happens. His pulse ox sats were dipping causing the monitor to alarm so after fussing with it for like 30 minutes the nurse just took it off. “Oh we only have orders to monitor you every 4 hours so I’m just going to take it off.” Sometimes it does read incorrectly and we can tell because although his pacemaker range is 110-170 his heartrate is always 110. So we can read on the monitor if the pulse ox is saying 65 but his pulse is 90…. well obviously it is incorrect and not reading. I’m trying not to make a big deal about it but one time a nurse came to do her checkup and hooked up his sats and it read 90 so that is what she recorded. Now, I don’t think that is accurate either; its just a snapshot of an outlier. I didn’t want that to happen again so I asked for the monitor to stay on for a bit just so we could watch it and see where a real value might be. We talked to Denise the NP (who we love from last time) and she helped calm our nerves a bit.
Now that Evan doesn’t have a chest tube and is only intermittently hooked up to the monitors he is a lot more easy to handle. Not that a couple wires are any big deal to mess with but it makes the odds of accidentally pulling something much smaller. I was putting Evy back into his bed and he let out a screech and I saw that his g-tube was hooked on the bed and it was pulling on him. My poor baby! It didn’t pull out or anything but for sure it wasn’t comfortable. Kim and Brian told us a couple g-tube stories and I think we have been very spoiled with the fact that he doesn’t yet play with it, he is still immobile, and we can still swaddle him at night so it will stay put. Although I am very much looking forward to Evy growing up I am not looking forward to him getting into things, particularly his g-tube. I saw one video online of a mother taping that sucker down and that doesn’t seem like a really good fix either. I dread the day we can’t swaddle him. I might have to contract some craftiness from my sewing friends to rig something up.
Day 7 – Monday
Discharge day! I spent the morning packing up the hotel while Daddy spent another night in the hospital with Evy. HomeMed brought up the feeding tube we will be going home with and showed Daddy how to use it. We are currently on a protocol to up his feeds but we will need to continue at home following a protocol they gave us. We will follow up with GI at UofM in a month. We went over the discharge paperwork with the nurse. Nothing terribly surprising. His meds are very different. We ended up coming off the Reglan, Lasix is trippled, different hearburn med, and some pain meds too. We will need to figure out a better schedule when we go home. Evan got his fem line out, the last IV port in his leg and he was also given his Synagis shot a couple weeks early. NP Louise was telling us that babies lose ~ 50% of the drug when they are on bypass so it is ok to give it early. Plus is has some immune boosting properties and we could use that.
We did a crummy job at getting pictures with his nurses but we did go by and say our farewells for a little while. We even saw Dr. Hirsch as she was visiting a patient down the hall. It is amazing to be leaving so quickly and almost feels surreal, like when is the bomb going to be dropped on us… It is actually good for Will and I to be getting out of there while we can. We are both starting to come down with colds! This happened last time we were here and we were sick during delivery. Now we just need to make sure we use our Purell stations at home and Evy should stay healthy.
We came home to a clean house thanks to Will’s family who let us have some peace of mind (before we trashed it again of course). We also didn’t come home to our dogs, who we love but just didn’t want to deal with at that moment, thanks to the generosity of our friends and neighbors the McDonalds. Evy also got to finally meet his Aunt Heather! She drove up here from Florida with her boyfriend Jimmy and it was really perfect timing. Thank you to everyone for your support throughout everything. It is crazy to not have another surgery breathing down our necks and we can just enjoy our time with our amazing baby boy. We still have a long road ahead of us with OT but I know Evan will be able to succeed. He just has that spunk about him.
