So, we are here. A little weary from all of the work it took to get our lives re-organized, but much better off standing on the padded, plush carpeted floors of our own living room than the hard, concrete tile floors of the PICU. I remember when I returned home from being on bedrest with Charlotte how thankful I was for carpet, and after putting in hours and hours at Ryan's bedside in the hospital, the feelings came flooding back to me. (Chris seconds this notion as well).
Yesterday was full of unloading drawers to make room for reloading of medical supplies, unpacking and replacing belongings that had trickled into the hospital, shuffling paperwork, deciding what to keep, writing down important numbers and keeping all of the nice cards we recieved. We also spent quite a bit of time putting away food and gifts given to us from Staff and Parents at Good Shepherd to Family and close Friends. We have been blown away by the generosity of people we know and love and people who only know our family from passing or the words they read on this blog. No matter the connection, we are so thankful for you all. I find myself repeatedly thinking, how can we ever return the favors that have been done for us?? One of the things I have missed about my life before kids is being able to do things for others. As a family, Chris and I have had to be so focused on our children that we often feel we have blinders on and don't have much energy to focus on others. In many ways, I know that is exactly what we need to be doing, but in many ways, I look forward to the time when I can give back. I know that outlet will come to me someday...
Yesterday, we also met with one of the Wings nurses and she told us "we are so thankful to have a family like you!?" Apparently, some families leave their children at home by themselves...?? So, I guess when she walked in and met us (after getting over the shock of thinking we were in highschool... haha She realized we weren't that ignorant). The meeting was fairly informal and we were told that they will be checking in on us 2 times per week. Mostly to answer questions, help us get supplies we need and just to check on how Ryan is doing.
One of the BIGGEST challenges of the last 24 hours has been managing the TUBING!!! I have wanted to scream several times due to tubing wrapped everywhere you can think of and no where it should be. Imagine, a massive noisy machine (oxygen compressor) sitting in your baby's nursery... hummming....LOUDLY.... heating the room, forcing you to leave the door open so it doesn't get too hot in there, and then feet, upon feet of tubing, perfect for tangling around feeding tubes and the IV pole that the feeding pump is pulled along on, getting under foot, wrapping around and twisting any way possible. Also note that the IV pole has 5 rolly feet, none of which fit in small places easily. The day was absolutely maddening as we got used to the 3 ring circus that occurs whenever we want to take Ryan from the living room back to his bedroom for a diaper change, or simply to move from the couch to the swing...!! I know we will get better at managing it all?? But, right now it definitely takes at least 2 people to maneuver it all most of the time. But, we did manage to give Ryan a bath tonight, in the Tub... boy are we brave!
Last night, Ryan was pretty fussy in the evening, but we got our Dr. to call in some Pepcid for him as we thought maybe having an empty tummy was bothering him. He seemed better today... He slept pretty good at night, only waking for 2 diaper changes. The thing continuous feedings is that his bladder is continuously on "go mode" so he doesn't really have any time of day that he isn't peeing as much, say like he would if he only ate before bed and not throughout the night. So, middle of the night diaper changes are a necessity, thankfully, he is pretty good to let us know that he is wet and goes back to sleep fairly easy. We also had Ryan hooked up to the Oxygen Saturation monitor to start the night out last night, but when it kept falsely alarming in his room and we couldn't change the lower limit of the heartrate (since his O2 Sat never dropped), we decided to "unplug" Ryan. The beep from the alarm is so LOUD, not drowned out by the LOUD compressor in his room and we were sure after like the 5th alarm he would wake up. Not to mention that we weren't sleeping either... So, Ryan is "unplugged" until further notice or we can change the limits. At least we can use it to check his O2 sat if we are ever concerned.
We have sent emails for log in info for the care calendar. We have mostly put up needs for meals, but please don't think that if every meal isn't provided that we won't eat. We will figure out our new routine. Please encourage others who want to help to email us for log in info, please do not just give them your password. We want to know who has access to the calendar. So far, we still have family here to help us, my brother and his wife are here until Tues. and my mother, sadly, is leaving tomorrow. I can't thank her enough for all of the loads of laundry she has done, errands she has run and countless hours she has spent with us in the hospital. I am so greatful to have a mother that will drop everything for my family at a moments notice. And also, to Terry and Steve, Chris' parents. You also dropped everything in your lives and modified your daily activities to take care of Charlotte for us, taking her to school, making sure she drank her milk every day, got a bath when needed and also making sure she got to see Mommy and Daddy in the middle of everything. To my Dad, thank you for also dropping everything to come out and be with us and also making the trip back to Kansas to get your parents so they could be with us too. And for the nightly phone calls, just to stay in touch and to show how much you care and want to be here. To our siblings... you all have helped in countless ways, with meals and with support. Mostly, you have offered an ear to vent to, or a shoulder to cry on. We need you so much.
One final topic, the events of the coming week. As much as we would love to hang out at home, we do have other events on our agenda. We are supposed to meet with another neurologist, Dr. Connolly, from Children's for a second opinion. This is really at the recommendation of our pediatrician, but also, Dr. Mantovani, the neurologist that was working with us while we were in the hospital. They both feel that she is very good and that another opinion on such a "unique" case will be helpful. It will be quite an undertaking as we venture out with Ryan for the first time, but, I am confident that we will survive. We do not have any of the genetic testing results back yet... They were collected Wed. of last week, so maybe some results by the end of the coming week.
I have typed so much, yet I feel I have so much more to say. I haven't even touched on the feelings deep down. In many ways, I think many of you already know that it is impossible to put them into words. Some descriptors I would use would be frustrated, scared, unsure, useless, reminisant, overwhelmed, dazed, hopeful, blessed, confused... I am frustrated by the "things" getting in the way of me just loving on my baby, scared of what is to come, unsure of what I can do to help Ryan physically and unsure if the Dr.'s are right. I feel useless when Ryan is crying and I can't feed him or soothe him and all he wants is to be put down. I am reminisant of the moments we had at home BEFORE our lives changed so dramatically. I am overwhelmed in good and bad ways, dazed as I find my mind with Ryan constantly if I am not by his side, hopeful that maybe we can find some way to help our little boy become strong again, blessed by the strength given to me by God and of my family, friends and the time we have been given with our son, and confused about what my role is in all that has happened and all that is to come. And yet again, I feel so much more than I can type... But, what is important is that God knows all of these feelings and feels them with me. So, the feeling I must focus on most is Trust.