Well, we did and got up here about noon. Our room is pretty spacious, plenty of room for all of Matt and I's junk, plus a wild kingdom of stuffed animals for Quinn. Lucky little girl has been utterly spoiled since she got here (as she should be after 2 surgeries). Hope she's ready to share her loot with her brother when we break out of this place :) Seriously, our friends and family have been so generous and thoughtful - we are beyond blessed.
So far everything has gone very smoothly up here (or down here depending upon how you look at it). 15 is a totally different world from 18th CVICU. You go from having round-the-clock one-on-one care to being thrust into the regular hospital world with no transition. I love that we are able to care for Quinn more and do more than just comfort her by patting her back, but it was also super scary for me to be on my own for the first time. They want you to know how to administer meds, bathe, clean her incisions, remove tape, etc etc. Those are all totally reasonable requests so that you are prepared when you go home but just even holding her or picking her up can be tricky! It's almost like I have a newborn again and I am trying to learn on the job as quickly as I can.
We have to be super careful the way we pick her up. I am thankful she's just a little peanut otherwise it would be even more difficult. Because of her incision, we have to do almost this scoop method to sit her up or get her out of the crib. No picking up under the arms or anything else that would stretch her incisions. We were finally able to put real clothes on her Friday and you can just imagine that I brought half of her closet up here because I was so excited! I also didn't know what would make the most sense to wear or be the most comfortable. Thus far we have settled for loose tops and little bloomers and she's a happy camper. Oh, and of course socks and shoes. I knew my little girl was coming back to us when she starting pointing at her shoes and lifting her feet for us to put them on! I almost cried tears of relief because that's the Quinnie I know and love.
Yesterday we were even able to put her in a wagon with a bunch of pillows and take her for a little ride around the floor. It was soooo good for her to get out and see something different than this room. In fact, when we got back, her saturations even jumped up because she had more energy running through her body.
Which brings me to the medical part of her recovery.... she is right on track for her type of surgery. The doctors are all very pleased and quite frankly, now that we are on 15, we only see them once a day because again she is quite boring. I'll take it. The only pain med she is on (and has been since Thursday I believe) is Tylenol with codeine. That's incredibly to me! And typically she only has that every 6-7 hours now --- and we request it when we think she needs it. To be honest, Quinn has been so strong and not fussy at all up here, that it's difficult to tell if she is hurting. So right now while we are here, I make sure she doesn't go more than 8 hours without it, just so the pain doesn't become unmanageable.
She is also on a diuretic type drug to continue to flush her kidneys and make sure her lungs keep dry. It's not unusual that babies that go on bypass for an extended period of time would have a little bit of extra fluid in their lungs. Her xrays as of yesterday have all looked clear but they are being cautious. She receives that 3 times a day but we are trying to work it down to 2.
So, after a 8 hour open heart surgery, this little one is just on 2 drugs! No blood pressure meds or anything else that we were warned she may have to go on. She will most likely go home with the diuretic but just for a short period of time, and will have the Tylenol for probably another week or two.
Her incision looks great. It's long for sure but it should just become one little line over time. It does go from pretty much right below her throat down to the top of her tummy so definitely not tiny, but small price to pay for having a healthy heart!
She is starting to eat and drink better - eating is coming along more slowly than drinking. I think part of it has to do with perhaps the codeine suppressing her appetite a bit and also comfort while eating. She's been on her back for so long that I am sure it is disorienting to sit up and try to eat again. We did request a highchair for her - but it must be for a 28lb baby, so we brought ours from home. It seems to work a little better and she's more comfortable in it. I also think this food is probably not incredibly exciting. We do get a menu and get to choose options for her but they do not vary from day to day - and a lot of what is relegated to is the same ole hamburger patty, chicken nuggets, or spaghetti. Our lifesaver has been our yobaby that we brought from home because she will almost always take that without fuss. And yesterday I brought up some frozen meals that she has always liked, so I think we'll try that today and forgo the cold nuggets. Nothing like probably paying an arm and a leg for this room and food to let it go untouched and still have to buy your own food for your baby. BUT every cent is worth it to get her to eat and get on out of here.
I think the most surprising thing for us is that she has been pretty much a complete, calm angel since we got up here. No fussing except if we maybe move her wrong. The doctors and nurses kept warning us that the fussiness would ensue once she was off of the hard-core drugs, but it hasn't been anything that's been uncontrolled at all. She seems to be taking it all in stride which in turn is making us more calm. By some miracle, she is almost on schedule as well - sleeping a couple of times during the day, eating her meals and snacks at appropriate times, and then sleeping through the night for the most part. The worst is that they must do vitals every 4 hours so she is disturbed at midnight and 4am. But even that she has handled like a champ and gone straight back to sleep. She's for sure dealing with the constant interruptions better than her parents :) They also do a weigh-in at 4am and have to strip her down naked & throw her on this cold metal scale. I understand the weighing, but seriously, 4am??? The assistant who did it last night received a nice little talk with me about being more gentle and kind during these little weigh-ins. Her mannerisms left much to be desired in my opinion for a 16 month old 5 days post op. AT 4 FREAKING A.M.
So Matt and I are now virtually passing ships in the night. Only it's usually not the night but the daytime --- we are taking turns staying up here for 24 hours at a time so at least one person can get some good rest and see our sweet son. It's actually really funny, we've almost become like 2 nurses switching shifts where they give the breakdown of the patient. Yesterday I came on duty and Matt walked me through how their night went, where he was keeping things, how he was keeping track of her intake, etc. All I can say is that I am incredibly fortunate to be married to such a caring, attentive, hands on father.
We are both kind of living out of our cars now, just rotating clothes and toiletries out as we go home. It's not what I consider ideal for sure because I want Quinnie up and out of here, but all in all, it really is running quite smoothly. I don't know what we would do without our sweet friends, that's for sure. We were so fortunate to be able to stay at our friends' Katie and Ryan's house during her ICU stay (they are about 5 minutes from the med center) and then Quinn got lots of visitors yesterday to keep us all occupied and help the time pass just a little bit faster. I think they were all a little surprised how well she looks. Of course, she looks tired and she's definitely not the fiesty thing yet they are used to seeing but all in all, she looks wonderful and fairly content. I honestly just think she is bored to tears. How many times can you watch Tangled???
Hopefully today (Sunday), we can get her out even more and go take some more laps around the floor. And I'm hoping for a bit more spunk and perhaps even more smiles! Last night I finally got my first hint of one as I played peek-a-boo under her highchair. Melt.my.heart. And then she felt strong enough after eating dinner to sit up all by herself on the floor and play with some toys and her shoes. She even was able to stand with assistance between my legs and seemed perfectly happy and comfortable doing that.
So all of the above may seem mundane but it's really more for me to remember this journey. This has been quite the 6 days - part of it has just dragged on, but part of it seems like it was already ages ago that we were sitting waiting for updates during her surgery. It's a bizzare feeling.
But her recovery is definitely going much faster than we anticipated or dreamed. There are even talks of us getting out of here by Monday or Tuesday. Yes, this Monday or Tuesday. As in 6 or 7 days post operation. Whoa. No matter how eager we are to have her under our roof again, we definitely want to make sure she is ready but we trust this staff immensely to make the proper recovery decisions for her. And if we don't feel she is ready, then we'll say so. Patient advocacy is a huge responsibility for us and one we take very seriously. We ask a TON of questions and make sure we know every little thing that's being done or administered so we are all on the same page.
So we'll see - for now we are just taking it one day at a time. And selfishly, I am soaking up this little cuddly one that I have now :) If you've read this blog for any amount of time, you'll know that Ryan is typically more of my cuddle bear & that Quinn is usually too busy to stop and just lay still. But yesterday we must have laid together for several hours combined just watching movies and lots of football. I hate that heart surgery brought her to that but I am going to enjoy it while I can!
Sorry for the long-ish update but had some catching up to do. We will keep you posted on her release date. What a day of celebration that will be! God is so good.
Love to you all