Friday, July 18th – A new day…a new perspective

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I woke up this am feeling like a new person.  More positive, more optimistic.  It’s a new day.  Today is going to be a good one.   Not feeling like I could cry at the drop of a hat…over nothing and everything…whether I’m thinking about Riley, my husband, Oakland meals, or simply looking at a box of tissues.   I blame the hormones on the tissue box scenario:)

Usual morning routine.  Packed a lunch today to allow for a little variety in our meals, and thanks to my family and friends, we have enough meals and snacks to last us the month!  You guys are awesome!

Riley had a new nurse again today.  She was absolutely wonderful…might be one of my favs.  She explained that Riley did well overnight, continued to have some b’s and d’s, but nothing out of the ordinary.  Continues to tolerate her feedings without difficulty.  More nutrition = more weight gain = stronger Riley.

Rounds – they’re getting shorter, which I take as a positive thing, because when there’s not as much to talk about…not as many issues to address.  I feel like that means Riley is in less of a critical state.  They re-iterated that she continues to have b’s and d’s, and that they’re considering adjusting her CPAP settings and increasing her “caffeine,” which they’ve been giving to her since she was born (yes, it’s sort of what it sounds like…a dose of morning joe to help stimulate her brain to tell her physiological systems what to do…gets things sort of jump started).  The caffeine may help to reduce some of these episodes.  Again, they reassure us that this is completely normal, and she will likely experience there episodes for at least the next month or so.

Her bilirubin is back down to 5.4 (from 6.8).  So what do you think the docs were going to do?  That’s what I thought, too, but they threw a little wrench into things and decided, “Let’s keep her on the lights one more day, instead of doing this on and off every other day sorta thing, and then hopefully we can keep her off for longer periods of time.”  Makes sense.  Sounds like a plan.

Riley is also peeing and pooping like a champ (those are obviously my words not the docs).  You wouldn’t believe the amount of times she “stooled” yesterday.  I’m hoping it was just her giving dad extra birthday presents, as we were starting to get concerned she could possibly be pooping too much now!  She did lose some weight (no wonder)!  My goodness, she really is our little “shit machine.”  

After rounds, the nurse came in and asked if I’ve done “kangaroo care” with Riley yet.  This is the term they use for “skin-to-skin contact,” so basically the baby is in nothing more than a diaper lying on mom’s bare chest.  There are many benefits to this technique, as it helps stabilize the baby’s heart rate, can improve breathing patterns, improves oxygen saturation levels, allows for more rapid weight gain, can decrease crying, and often leads to an earlier hospital discharge in premature infants.  When I told the nurse “No, I haven’t, but I’d love to,” she was on a mission to make sure this happened.  YESSS!!  – Another opportunity for mother-daugther bonding. I was a tiny bit nervous, but mostly excited.

The nurse positioned my chair and spent a few minutes unhooking all of Riley’s monitors so she could be transferred over to me.  Then she handed her to me, and instantly…I felt the warmth of her skin against my chest for the first time, and could feel the tiny rise and fall of her chest against mine.  It was so surreal.  We also could hear a cute little vocalization with each breath.  This is because she currently has a bit of a stridor (a high-pitched, musical breathing sound) secondary to being intubated for so long, so her vocal folds are likely a little swollen.  This “kangaroo care” thing was like a miracle worker for her, because all morning the alarms on her monitor were going off because she was having b’s and d’s (drops in heart rate, drops in O2), which regardless of what the nurses and docs tell you about this being completely normal, it still sucks to watch as a parent…staring at the fluctuating numbers after the alarm tells you that something is wrong, waiting and hoping that they go back to the “normal” range.  During the hour long kangaroo care, Riley didn’t have any episodes of b’s or d’s.  Not one.  This kangaroo stuff really works…it’s not just a hoax.  And I felt that I was finally able to contribute to my daughter’s healing and continued progress…something I’ve been longing for since she was born.  I now feel like a part of my broken heart puzzle was put back in place.

We visited our friends who just had their baby girl yesterday.  She was cute as ever, looking like an exact replica of her dad.  It was sort of fun to compare her size to Riley’s, and to remind ourselves of what a “normal-sized” baby looks like…remind ourselves of what Riley will be like one day.  Also had a good friend visit, and she was able to see Riley temporarily without her crazy sunglasses on.  And that’s a true a bonus these days:)

As an aside…I want to take a moment in this blog and express how much the amount of support, thoughts, and prayers that Ian and I have received, from my day of admission to now, has been remarkable, and it’s the reason that Riley has pulled through and her parents haven’t completely lost their minds.  We have so many people who we know we can count on, and we take huge comfort in knowing this, because we know we’re going to be asking for help over these next few months, as we just can’t do this alone.  Ian and I also spend a portion of the day reading through emails, texts, and the comments posted on this blog, and it again reminds us that we have so many friends and family that have our back…that are pulling for Riley, and are following her success story.  The words “thank you” simply aren’t enough, but Thank You!

Came back from dinner and laughed pretty hard for the first time in awhile, and I was laughing AT my daughter.  Not with her…at her.  I completely admit this.  The nurse had apparently decided to put a pacifier in her mouth, but it was half the size of her head and looked absolutely ridiculous!  I busted out laughing.  I couldn’t help it.  And I actually told my own daughter tonight “You look ridiculous.”  Ian yelled at me.

The night ended with Riley’s BFF nurse coming in for a visit.  She was excited to see how well Riley was doing, as she was basically a new little woman since the last time she had seen her several days ago.  And then the nurse said…”I’ll be right back…I have a present for her.”  A minute later, she comes into the room with a Claire’s bag and pulls out a “Best Friends Forever” necklace.  We were cracking up.  She beat me to it!  I had looked several times for BFF jewelry in the hospital gift shop, and haven’t yet had a chance to look anywhere else, but this was definitely something I had on my to-do list.  Well this nurse just couldn’t wait!  She taped the necklace to the outside of Riley’s incubator, and positioned it so it faced towards Riley, although we both acknowledged that she can’t see much of anything with that darn eye protection on!!  Another good laugh.  It felt good.

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