Saturday, July 16, 2016

Three weeks old today

Finn is three weeks old today. He's starting to show his personality, letting us know when he is content and when he is not. He loves his hands, snuggling, tummy time, and bath time. He is not a fan of wet diapers--or diaper changes, or of being cold. 

He's a great eater, most of the time. He's up to 3.5oz per feeding, and he's eating about every three hours. He'll sometimes get hungry after two or two and a half, and occasionally he'll go four hours. He has an adorable (and only sometimes annoying) way of avoiding the bottle when he's not hungry anymore. He opens his mouth wide and lifts his head and shakes it back and forth. It almost seems like a game to him. We need to get a video of it. Other times, he'll just close his mouth and nothing will get him to open back up.

Thanks to the generosity of my brother-in-law's cousins, Finn has been fed exclusively on breast milk. We've probably got two or three days left of milk from one cousin, and then we'll start on the milk from the other. I'm hoping we'll be able to make it to six full weeks, but it'll be close. The cleft team's dietician has recommended we save enough breast milk to allow us to have a gradual transition to formula, so we may be cutting it a bit close. Regardless, the fact that he's been able to have only breast milk so far is amazing. When we were still in the hospital, the lactation consultant came by and said their whole team was impressed that we were able to get donated milk for him, but honestly, it was very little our doing, and all thanks to the cousins.

Knowing how precious the milk is, it is hard when he doesn't finish a bottle. Fortunately, he hasn't done it often, but when we have to pour out half an ounce or more, it's almost painful. People talk about breast milk being liquid gold; it's even more valuable than that when we're dependent on others for it. We figured out that we can reduce the risk of having to pour out any milk by making smaller bottles and adding to it if he's still hungry.

His cord has finally completely  healed, so he got a real bath this morning. He loved it, particularly when we washed his hair. He was relaxed and content the whole time, until we drained the tub and he got cold, that is; then he got adorably mad until he was dry and clothed again.

Yesterday, Finn hung out with his dad and Grandpa B while I was at chemo, and in the evening he had his first trip to Costco and first trip to his Brotzman grandparents' house. Today he got to experience Target. He slept in his infant seat carrier draped under a blanket the whole time, which helped us to get in and out of the stores quickly.

He's sleeping well. He usually has one or two fussy periods in a day; we prefer it when those times are during the day rather than the middle of the night. He's having more stretches of 4 hours of sleep at night, which we really appreciate.

We decided to try a pacifier with Finn, after noticing that he loves to suck on his fingers, that sometimes he just can't settle down, and that when we give him his Vitamin D supplement, he loves to suck on our fingers. We're experimenting with several different kinds now to find one that he can keep in his mouth; from what I understand it can be difficult for any baby, but with his cleft, there's a bit more of a challenge. He wasn't interested in the ones we tried last night, so we picked up a couple more today and will see what he thinks of them. We'd prefer him not take a pacifier, since our understanding is that he won't be able to have it for a while after his surgery, but it seems like it might be something he needs--and it's easier to wean from a pacifier than from fingers, since we can just take away the pacifier.

I'm finding chemo to be easier now that I'm not pregnant. I have more energy even on my hardest days, and I'm so glad for that. I was really anxious about trying to take care of a baby with the amount of energy I had in the days following chemo--Mondays through Wednesdays are my most exhausted and achy days, but they're not as bad as they were when I was still pregnant. It also helps that I can now take ibuprofen for the aches instead of just Tylenol, which didn't seem to do much of anything for me.

I've only got three more chemo treatments to go. It's hard to believe I'm so close to being finished with it. Each week, I walk through the garden on my way into the infusion center, and I pass by the chemo bell, look at it, and think about when it'll be my turn. Soon, I think. Soon. And it is soon: August 5, 2016, which is also Kevin's birthday, is going to be one awesome day.

I noticed on Wednesday night that my lump was much more noticeable and closer to the surface than it had been, and I'll be honest, it panicked me. I talked with the oncology PA on Friday about it, and after checking it, she said she wasn't worried and that it was probably just the changes in my breasts from not being pregnant anymore. My milk never came in (a blessing, I've decided, since I didn't have to deal with the physical pain of letting it dry up nor the emotional pain of having to deal with milk that I couldn't use), so my breasts have changed somewhat over the past few weeks.
Even though she wasn't worried, the PA said she would send me for an ultrasound if it would ease my mind, and I agreed. They were able to get me in that afternoon, and they even worked me in two hours earlier than my scheduled appointment time when we walked over after my infusion finished. We had good news from the ultrasound: the tumor now measures about 1.5 cm, which is less than half the size it was when I was diagnosed March 1. I knew it was smaller, but it's kind of comforting to have that confirmation. I had hoped it'd be smaller, or even gone by now, but I'll take it. My oncologist has said that what we still can feel of the tumor could be all or mostly scar tissue by this point, though we won't know until surgery.

My hair is continuing to grow--Kevin observed this evening that it's sticking straight up on top now, and when he took a picture of me and Finn from behind me, I noticed how much darker it's looking. Yesterday morning I thought it almost looked like I had bedhead! It's hard to believe I almost have enough hair now for bedhead!

My eyebrows and eyelashes are continuing to thin, but they're still there. I know that it's possible, even likely, that I'll lose them completely, and that it might not happen until I'm done with chemo. It's odd to me; my head hair is coming back, and soon I'll have to shave my legs again (ugh!), yet my eyebrows and eyelashes are just now going. From what I've read and heard from others though, it's pretty common.

That's all I can think of for now. Finn's sleeping on my chest as I write, and I think he's got the right idea. Good night.

Sunday, July 3, 2016

7 Taxols, 8 Days of Parenthood

Friday was my first post-pregnancy Taxol infusion. My mom came with me while Kevin stayed home with Finn. Leaving him was hard. I may have cried a bit. Can we blame that on hormones? Yes? Good. Kevin sent pictures to keep me entertained.

 It's probably good that when we left, I thought it'd be just a three-ish hour infusion. Three hours I could get my mind around. However, when we got there, the nurse told me my hematocrit was still quite low at 25, and that I may need another blood transfusion. She got me started on my premeds and let the PA know I was there. The PA came by a bit later and asked a few questions, particularly about how I've been feeling, my energy level, and my breathing. Since yesterday I felt more exhaustion than I normally feel on Mondays after Taxol (my worst day for that), it was a pretty easy decision to agree to the transfusion, even though it would add on several hours to my time in the infusion center.

Typically, they'd infuse two units for someone in my situation, but since I'd just had the two, and it was so late in the day (transfusions take about three hours per unit), I just got the one today.
I was still able to get my Taxol, so that keeps me on schedule there (yay!), and I finished it about half an hour before my blood was ready. I closed out the infusion center, finally finishing a couple minutes after 5.

The whole time we were there, I felt wide awake and alert and knew that attempting to sleep would be futile. It wasn't until the last forty or so minutes that I decided I'd just close my eyes, even if I didn't sleep, and I think I got about a twenty minute nap in. Every minute counts, right?
Several of the office staff and my regular nurses stopped by to see pictures and ask how we were doing. I'm not going to lie; it was fun showing off pictures and talking about how awesome Finn is. They also liked my awesome new socks from my sister Caren.

 I couldn't believe how much better I felt post-transfusion. I had more energy than I'd had in weeks, and I was amazed to find I could make it up two flights of stairs, do what I needed to do, and come back downstairs, all without a break. For a while now, I've needed to lay down after going upstairs, just to recoup the energy. It was getting pretty ridiculous.

Unfortunately, I overdid it. My sister Kathleen, her husband Will, and their 11-month-old Graham came in for the weekend on Friday night. Kathleen and Mom both offered to take any feedings during the night, and I told them I'd get them if needed. I did not. Finn pulled an all-nighter, waking for his 11pm feeding and not going to sleep for more than ten minutes at a stretch until 5am. Every time I thought ok, it's time to wake someone up, he'd fall asleep, and I'd think we were in the clear. Then I'd lay him down and he'd start crying again. Eventually, he took a whole bottle and fell into a deep sleep, and I was able to go to bed as well. I slept about four and a half hours, got up for a bit to have breakfast and visit with everyone, then went back to sleep for another hour or so.
Throughout the day, I still felt better than I had before the transfusion, but nowhere near as good as I had Friday evening. I went to bed around 10pm and, with Kathleen on baby duty, slept until nearly 9. It was amazing.

Here's Finn at exactly one week old. Yes, I cried.

Sunday was much better. I was careful to make myself rest more, despite feeling antsy all day and wanting to be active. In the afternoon, Kathleen asked if there were any wineries nearby, and I told her about Boordy's, which is just ten minutes away. She asked if I was up for an adventure, and I said yes.

I was smart enough to recognize that I shouldn't try to do the tour, but we did enjoy a tasting and sitting under the pine trees while Finn slept in his stroller and Graham played in the grass. I have spent very little time outside lately, so it was a big boost to my energy and spirits.

Will made us delicious burgers (all that iron in red meat!) and mashed potatoes and cut up a perfectly ripe cantaloupe for dinner, and we've spent the evening watching Will Ferrell movies and now the boys are having a blast on Rock Band while Finn snoozes in my arms.

Life is good.

Happy baby!

Finn got his first bath at home a few nights ago. My mom captured this amazing shot of him with his big wide smile. I love it so much.