Tonight, as I am sitting here trying to write, I am having trouble thinking over the sound of my pump. I've mentioned this on a previous blog, but my pump talks. We never have conversations...I'm actually quite aware that it is an inanimate object with no REAL ability to talk. But the hum of the motor...it sounds like the pump is talking. Usually, it just mocks me with its obnoxious attitude, calling me "Wacko" or telling me to "Let it go." I've managed to reach a truce with the pump this time around. Mostly, I just ignore the mocking, and it works and actually produces a decent amount of milk (8 ounces for me tonight!).
While most of you are wondering whether you should call the authorities because I've finally cracked, I'm certain my mother will smile when I read this to her. I know this because the first time I ever blogged about a talking pump, she called me...to tell me that her printer talks to her. We were hysterical on the phone as we discussed our talking inanimate objects and compared crazy statements. My mother thought her printer said things like "beautiful," and I asked her if her printer could teach my pump to get a better attitude. Even now, as I'm listening to it say "wonderful," it is still copping an attitude with me...there is a definite sarcastic tone in there.
Today was an incredibly challenging day...and Maya's 3 month "birthday." I cannot believe she is already 3 months old...or that she has spent the majority of her life in a hospital. Twenty years from now, when she announces that she plans to become a doctor, I'll know it is because she feels most comfortable in a hospital after spending so much of her time there the first months of her life. I need to work on giving Maya more floor time...hard to do at a hospital. I try to put her on the bed with my mother for a little while each day, but she just isn't getting enough time down to explore and play on her own during the day. She is thriving, despite all of her hospital time. She is a social butterfly, who smiles at everything. She can roll from belly to back, and I think she is already able to hold a sit for a few seconds at a time. I love how she coos and talks to me, and she is amazing at holding her head upright. We finally have her reflux under control, but we are still having issues with her sucking and swallowing. When she does lay on the ground, she kicks herself all around in circles. She is starting to put everything in her mouth, so she is usually a drooling mess.
Maya woke up at 7:45, and I brought her into bed to nurse. Micah was wide awake, too, and by 8:15, we decided to bring him into our room. He came running down the hallway and jumped into bed with his usual screams of "Mama" and "Daddy," and he pulled all the pillows on top of him, proudly declaring "Night night." As usual, he was adorable this morning. My mom called while we were all snuggling in bed, just to tell me that she was feeling much better this morning. I put on the speaker phone, and she had a chance to chat with Micah a bit. Unfortunately, Micah behaved like a typical toddler and became shy the minute the phone was near him - he did blow kisses and wave, but his words completely disappeared.
We took the morning a little slowly. Micah refused to eat his breakfast, and Maya fell asleep in the swing for about an hour or so. I spoke to my father, and we decided to drive up to the hospital together today. We left our house around 11:30, picked my father up, and did not arrive at the hospital until 12:45 or 1. All of us went up today...Micah, Maya, DH, me, and my father. When we got there, mom was finishing up her lunch...unfortunately, because we were not there, she had the wrong lunch (and was complaining that she did not like it). We need to get there a little earlier tomorrow to make sure she eats the right food.
Mom was thrilled to see Micah and spend a bit of time with him. We actually took him outside to the children's playdeck, and he had a fabulous time. My mom had physical therapy shortly after we arrived, and she seemed very sleepy. She was flat again today...not smiling or talking much, and very uninterested in everything. All she kept asking was for me to "put her ears" in for her. I kept asking her if she wanted to unplug the ipod and talk to us, and she said no. After her physical therapy session, I asked her if she wanted to go outside to get some fresh air and see Micah playing on the playdeck. Again, my mother said no. I gave in and we returned her to her room. While she lay in bed, my father, DH, the kids and I were out on the playdeck for a bit. We returned to mom's room, hoping to find her in a better mood after a rest...but no such luck.
We decided to leave early since mom did not seem interested in having company. It was 4:00, and we all drove next to visit one of the rehab facilities. The location was pretty, and the facility seemed nice, too. I met the staff in the physical therapy room and asked a bunch of questions. We also met the weekend charge nurse for the floor where my mother will likely be. I have to say, I am definitely a little concerned whether they are sufficiently staffed to assist my mother as much as she needs assisting. It seems to me that most of the people there need very little assistance, and I am concerned that my mother needs far more assistance than they are accustomed to giving. I guess we can always hire an additional aide for her, especially overnight, if she needs the additional help.
After our visit at Brightwood, we decided to drive up to the hospital where my niece is staying to visit her. She looked good, but was fairly sick of being at the hospital and taking breathing treatments. The latest is that they think this was an asthmatic episode (although I'm not certain they can rule out infection, either). They gave her a single dose shot of penicillin for her strep infection, but they have not given her any other antibiotics. She is still having nebulizer treatments every 2 hours, and needs to be at every 4 hours before they will release her. We'll see how she does overnight and Sunday.
After our short visit, we stopped at Panera for dinner. Once again, Micah decided not to eat anything. I do not think he ate anything all day. He refused breakfast, he refused lunch, and he refused dinner...he just would not eat today. We got back in the car and headed home. My dad napped a bit on the way, and I caught up with my other sister-in-law to find out how her visit with our sister-in-law who just had a stroke went. We dropped my father off at 7:45, and made it back home a little after 8.
DH had just enough time to bring Micah over to the tail-end of our block party while I nursed Maya. Maya was hysterical - she screamed for almost an hour on the way home, and by the time I got her inside, she was inconsolable. She was hiccuping and choking and being quite the drama queen. She was too upset to even nurse! I finally put her on my shoulder, walked with her, and soothed her with some songs, and when she finally calmed down a bit, I was able to nurse her. I think she had those leftover post-hysteria hiccups for another hour or so. She finally crashed around 9:30, and we moved her upstairs to her bassinet by 9:45. DH and I watched some television before I crashed for a few hours.
I hope that tomorrow is better for my mother...I hope that she has some of her spunk and humor again, and that she is able to find the drive to build her strength. Right now, she has no energy, and it is frustrating. It is frustrating because I know she has the strength to fight harder, and I know she could be making bigger strides in her physical recovery if she could find the energy. Her physical well-being is critical to how she can enjoy whatever time she has left. If she wants to try and travel, or spend time with her grandchildren, or go out to dinner, she has to be able to sit in her chair for several hours at a time.
I wish I knew whether her current state of tired was depression, radiation exhaustion, or just actual physical inability to tolerate activity anymore. I wish I knew what she really should be capable of doing, so that I know how hard we should be pushing. Everyone says that the left-side "neglect" is her biggest issue...her brain has just forgotten the left side of her body. If we could teach her brain to pay attention, she is strong enough (and has enough control) that she would be able to walk and stand. BUT, the biggest component in overcoming neglect is personal awareness, and my mother just isn't interested in paying attention to the left side of her body right now, and that is her biggest barrier to progress. I guess I just have to be patient and see where this journey takes us...and I'm even less patient than my mother.
18 months in review
2 weeks ago