Friday, September 12th – Boxing matches, pinching, and splurts

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My boppy dance move

Another good night for Riley Mae.  Starting to see a pattern here…a pattern I like very much🙂  Riley continued to rock her feedings overnight and they have not had to place her feeding tube again!  This means she continues to remain free of tubes and tape on her face:)

During morning rounds, I was informed that the MRI was postponed until tomorrow due to being short-staffed, as Riley has to have a nurse accompany her down to the MRI scan.  The attending literally looked at me and said “Wow!” when she heard what an awesome day Riley had yesterday and how many great strides she made in such a short period of time.  The plan is to now also let her eat what she wants to eat, and see how she does, without her being penalized for not finishing a bottle (although that’s hardly ever an issue with the little chunker anyway).  This also means it will be a little easier for me to breast feed, as Riley has gotten to the point where she can likely handle it from a stamina standpoint, and we can try that first and finish with a bottle if need be.  We’re really coming down the home stretch here…

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Speaking of trying breast feeding again…we did.  And let’s just say the word “feisty” only begins to explain my daughter.  I’m convinced she’s a little nutty.  The best way I can describe this attempt at breast feeding is comparing it to a boxing match…no joke.  Riley looked like she was attacking me, as if I were a punching bag, and she had those devilish eyes again, and even had a death grip on my hair at one point.  I was literally cracking up at times, which I’m aware is not normal, but I couldn’t help it.  I had almost wished someone else could witness the insanity that was taking place without invading our privacy and ruining that beautiful mother-daughter bond that was so supposed to be happening, but was not…it was youtube quality for sure.  Anyway, it seemed that at times she was doing what she’s supposed to do, and it may have worked.  She did still take some milk from the bottle afterwards, and did really well with it.  So to sum it up…I’m not really sure how this breast feeding thing is supposed to go, but I’m pretty sure it’s not supposed to go like that.  Afterwards Riley just looked up at me with a look of “What the heck just happened?”  I just responded to her look by saying “I don’t know what that was Riley Mae.”

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Hehe…what do we have here???
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What the heck just happened??

Tried to nurse Riley 2 additional times today, and once she was too tired to participate, and the final time she sort of seemed like she was getting the hang of it, but then she decided to use her crazy hands and literally pinched me. Pinched me where her mouth is supposed to be.  That’s when I called it quits:)  Tomorrow is another day.

Right after the nurses changed shifts, the new nurse came in to discuss the next feeding time plan.  Her and I are talking about how well Riley is doing (as she’s familiar with Riley), and the plan for the next feeding session,  and the next thing you know….SPLURT!  A Riley explosion is heard from across the room.  The nurse just gave a sweet little grin and almost blushed, and I kind of yelled at Riley because I felt embarrassed and didn’t know what else to do.  I don’t know why it embarrasses me…it’s not like I did it, and I know deep down Riley can’t control her bodily functions, but it still just feels wrong.  My conversation with the nurse pretty much ended there and she left the room.  Smart girl…

Riley had a really good day today.  All 3 bottle feeds I did with her couldn’t have gone better…no d’s, no choking episodes.  Seems like she’s getting the hang of it, just needs a little pacing because she gets excited to eat.  Who doesn’t??  She also continues to gain weight, and is now up to 6 lbs 5.2 oz.  Another day chubbier, another day stronger:)

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Sucking on my bink…now this I know how to do!

Thursday, September 11th – A big day…a new look

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Got some more cleaning done this am before coming into the hospital around 10:00am.  Riley had another good night, only having one desat requiring moderate stimulation, which happened during a feeding.  Per the night nurse, Riley’s nasal cannula spent more time in her mouth than her nose, and she didn’t seem to have any issues.

During morning rounds, we discussed taking Riley completely off O2 again, and seeing how she does.  I continued to explain that I didn’t feel Riley’s desats during feedings are related to an oxygen issue, but rather it’s either an episode of her forgetting to breathe or choking.  The med team said “Let’s try it,” and if she needs O2 during feedings, then we can give it to her as needed.  Perfect!  I also asked about when the MRI was going to be completed, and they said “Let’s do it tomorrow, because we’re getting close to discharge.”  There’s that “d” word again…the good “d” word.  Riley may have some b’s and d’s after the MRI depending on how she reacts to it, but the med team explained they “won’t hold that against her, as we’re the ones causing those b’s and d’s.”  Sounds good to me.  Finally, the plan is to increase bottle feeds to 100% over the weekend as Riley tolerates and then hopefully discharge next week!!  YAYYYY!!  But remember, lets not get our hopes up.  One day at a time…anything can change at any moment…

Except for the many Riley expressions…

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“Ninja” Riley
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“Sleepy” Riley
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“Not to be trusted” Riley
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“I don’t know what I did wrong” Riley
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“Up to no good” Riley

So immediately after rounds the nurse came in and removed Riley’s nasal cannula, leaving it within reach just in case.  It was also time for me to give her her first bottle feeding of the day…without oxygen.  I wasn’t too concerned about it, because again, I personally don’t feel Riley’s issues during feedings are related to whether or not she is receiving enough O2… then again, I’m not a doctor.  Well, Riley rocked her feeding.  She just needed a little pacing, but didn’t have any d’s or choking.  Another celebration took place!  So proud of you Riley Mae…keep up the good work!!

Turns out Riley did need a little oxygen during her 2nd feeding (again, what do I know), as she tended to dip down into the 60s and 70s, although I hardly noticed because I was so busy watching her for color changes and helping to pace her, that she’d dip down and come back up so quickly…too quick for any dings or alarms to go off.  Riley was a little more tired during this feeding session as well, and I certainly am all about giving her a little extra help if she needs it and don’t want to do anything to cause her to have a bigger setback.  Maybe this is how it’s going to work for Riley…she might need a little bit of oxygen during her feedings for a little while so she doesn’t get too pooped out.  I’m okay with this…whatever we gotta do.

Ian and I attended a memorial service that was held at the hospital for one of the well-known doctors at Magee, as it was our neighbors father.  When we came back to Riley’s room, Ian could barely wait to get in the room and see Riley’s face without the nasal cannula, as pictures just don’t do it justice.  Then I noticed something else was different.  Wait…it can’t be…her nasogastric tube was pulled!!  No more orange mustache!! No tubes or wires on her face AT ALL…just the little stickies on the side of her face remained in place just case they needed to give her O2 again.  A new look for Riley Mae…her face without any medical contamination.   Amazing.

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Talked to Riley’s nurse afterwards to find out the reasoning behind all this excitement we walked into.  Turns out Riley had tons of boogies around the nasogastric tube, as well as in her other nostril (which she suctioned out), so the nurse thought it would be nice to let her be free for awhile.  She also said that Riley did awesome during her 4:30pm feeding, not requiring any oxygen, and that she might try to do all bottle feedings with her as long as she’s up for it without pushing her too much, with approval from the  medical team.  Sounds like a great plan:)  A plan that’s getting us closer to discharge…so close, Riley Mae.  Beginning to see the light at the end of this long ass tunnel…

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Wednesday, September 10th – The looks say it all…

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Telling secrets to my imaginary friends again…

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Chalk up another good night for Riley Mae.  No issues, and feedings are going pretty well, with only one desat over night and she’s requiring continued pacing.  

No changes during rounds.  I was hoping we could maybe wean Riley’s oxygen, as I’m not convinced she really needs it, but the nurse practitioner felt we should leave her where she’s at (on .03 liters) to avoid any additional b’s or d’s, and then send her home on the same amount of oxygen, as this may allow for the trip home to occur sooner.  Whatever we need to do to make that happen…

Riley’s bottle feedings went pretty well today.  She rocked the first one, without having any d’s or choking episodes.  We celebrated afterwards and I praised her up and down, giving her lots of hugs and kisses, like this was a huge victory….because it was a huge victory.  During the second feeding, she was a little more tired and towards the end she had a choking episode, desatting into the 50’s.  She did have a color change and required some stimulation to take a breath.  No celebration after that one;)  Finally, the last bottle feeding was probably the most difficult, and it could have been due to the timing of it all.  It was her third bottle in a row and happened right after a bath, so she was a little pooped.  She needed extra pacing and also occasionally just forgot to breathe, dipping down into the 70’s, but coming back up with a little stimulation.  All in all, not a bad feeding day. 

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Did you short me on that bottle??
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Give me my dessert….or else.

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Today is bath day, and I decided to give Riley a bath with the nurses assistance, as Ian wasn’t getting in to the hospital until a little later today, and he was concerned that Riley was making mad faces because she smells funky.  Could be.  So the nurse assisted me and it was pretty much all business.  Riley didn’t seem to mind it, and hardly fussed.  Some might say she actually enjoyed it.

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Halfway through her bath, I hear alarms going off next door, and then I hear the nurse yelling “I need help in here!”  Next thing you know, the medical team is sprinting past Riley’s room to the room right next door, and I immediately thought “Oh God, this can’t be good.”  I felt my heart begin to race, feeling immediate panic, and my mind became flooded with the traumatic events that occurred the night of Riley’s hemorrhage.  I began to have flashbacks of Ian and I sitting in the hallway in the wooden chairs, looking in at Riley’s room at the monitor reading zero as the med team was trying to resuscitate her, and hearing those words from the doctor “We’re doing everything we can, but she’s not responding.”  And then my thoughts went to the poor parents of the baby next door, and what they must be feeling in this moment.  Pure and utter hell.

We finished up Riley’s bath, I gave her the bottle, and then we snuggled for awhile afterwards.  I couldn’t help but continue to think of the situation going on next door.  There I was holding my baby who is currently only requiring a small amount of O2, is able to take her feedings from a bottle, and is overall doing really well…and right next door there are parents going through a very familiar nightmare. I even heard the mom ask what she should do as she was in tears, asking “Should I sleep here tonight?” and the doctor recommended that she “Go home and get some rest.”  Right, sure.  Impossible.  Anyway, this event today just seemed to bring me right back to Riley’s 2nd day of life, and reminded me of how far we’ve come…how hard Riley has fought to be where she is today, on her 66th day of life,  and what a miracle we have on our hands.  You bet I gave her a few extra squeezes and kisses during our snuggle time tonight:)   Another day stronger, Riley Mae…another day closer to home…

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Tuesday, September 9th – Crying with a purpose…

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So I hear summer is almost over…who wants to go boating??

I called in this am to see how Riley’s night was, as I stayed home for the first part of the morning to get some housework done.  Riley’s nurse reported that she had a good night…no d’s or b’s and she got 3 bottle feedings in a row because “she was so awake and alert,” and did well with them.  That a girl!…back on the upswing…

I was anxious to get in to the hospital this morning to see my girl as I was watching her on the nicview camera at home (and maybe even a little when I was stopped at a traffic light) and saw she was really alert around her 10:30 am feeding time.  I got in around 11:30am and she was still very alert.  The minute I got in to her room she looked so darn cute I just had to scoop her up and play with her.  We hung out for awhile, and she looked around but she was frequently looking at me…almost like she was trying to confirm that this lady holding her was in fact her real mom.  She grabbed onto my hair, reached for my mouth and occasionally put her hands on my lips, and stuck her tongue out and smacked her lips together, looking like she was ready to eat again.  I put her back down for a short period of time, and she remained awake up until her next feeding time, which was around 1:30pm.  Well around 1:15pm, I changed her diaper and then I hear this somewhat familiar but also sort of new sound…it wasn’t a fuss, wasn’t a groan….she was crying.  Like a real cry..that thing that full-term babies do.  I laughed a little a first because it was kind of cute, but I also wasn’t sure if I liked it.  She started getting mad, grabbing at her wires and almost attempting to put them in her mouth, and the cry became stronger and louder.  Those 5 minutes waiting for her milk to heat up were some long 5 minutes…for the both of us…

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Her first feeding session with me went really well.  She of course was eager and ready to go, so I had to help with pacing, but otherwise she did great.  No desats…no choking.  Success!  We snuggled for just a few minutes afterwards and then I put her down.  Just as I swaddled her and walked away from her crib, I hear it again…crying.  Get the heck out of here.  Now what???  She can’t be hungry (or maybe she is and the weight watchers plan is not working) , I just changed her diaper….what else could it be?  I tried daddy’s solution of putting the pacifier in her mouth and she wasn’t having it.  I tried just putting my hand on the back of her head to sooth her….nope.  Still crying.  So I picked her up and put her over my shoulder, and we rocked in the rocking chair, and in about 5 seconds she was out like a light.  Apparently she simply wanted some cuddle time 🙂

I know I haven’t written a daily poop description in awhile, so I figured I’d share one for fun today.  The nurse told me that this morning before I came in, Riley had a “really big poop,” and her eyes got pretty big as she said this.  She continued on saying “I had just changed her and she only had a real small amount of poop in her diaper, and then I turned away and started working on the computer, and I hear this sound, like…” and she was speechless.  So I finished her sentence for her…”an explosion, yes I know…this is what she does” I said.  The nurse described it as being pretty intense, and of course “it was everywhere.”  She was just thankful Riley had a diaper on when it happened, otherwise, we may have had to change rooms again:)

Riley’s 2nd bottle feeding went ok…she actually did a little better in terms of pacing because she was less alert, but by the end, she was apparently a little bit tuckered out and forgot to breathe, dipping down into the 60s and turning blue, requiring mom to get a little aggressive, but coming back up with a little time.  No biggy.  Then she got to snuggle not only with mom, but dad, too:)

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Ended the night with a weigh in, and it looks like daddy’s weight watcher plan is working…she dropped a bit, and is now at 6 lbs 2.1 oz.  Crying, bottle feeding, and pooping…looks like we’re on the right track…the track taking us homeward bound….

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Monday, September 8th – A rough start to the 2 month birthday celebration…

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Ian and I called in to the hospital last night before bed to check on Riley, and the nurse informed us that she has been having a few desats, sometimes requiring stimulation to come out of them.  This is not surprising and is likely related to the vaccinations.  However, it was still a little nerve-wracking going to bed after hearing that, but we both just crossed our fingers that the remainder of Riley’s night and early morning was uneventful.

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As soon as I walked in this am, Riley’s nurse was sitting at the nurses station, and she stopped me to update me on Riley’s night.  She started out by saying “I’m not sure if they called you or not…” and my heart kinda sank as I was thinking Great…what the heck happened where they’d have to call me???  and she continued saying “but Riley had bit of a rough night and needed to be bagged last night during one of her desats.”  Ok.  “It happened around midnight and she went down into the low 30’s, and her heart rate dropped as well.”  Well, that’s a hell of a way to begin your birthday celebration Riley Mae.  This is something that never gets easier to hear, but I thought to myself…it could be a lot worse.  She could be back on a ventilator with a tube down her throat, starting back at square one…but she’s not.  She’s still on .03 liters of home O2, and is overall doing ok.  They stopped her bottle feedings to give her some recovery time, but the nurse said we can try to resume bottle feedings this afternoon if Riley’s otherwise doing okay.  This is just another little hurdle we knew we’d have to jump…

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During rounds, the medical team discussed the events that took place last night, and blamed it on the vaccines.  They actually mentioned that she had to be bagged twice, but does the number really matter at this point?  Not really.  They agreed to resume bottle feedings as Riley tolerates.  The attending, who was someone we never had before, asked about the plan for discharge, and other members of the medical team who are more familiar with Riley’s case informed the attending that Riley wasn’t on 100% bottle feedings even before the vaccines, and that she has a little ways to go yet.  It was also mentioned that she’ll need an MRI before discharge, and when I asked what it was for, they explained that since Riley had such high bilirubin numbers shortly after her birth, requiring the exchange transfusion, an MRI is routine to ensure that there are no neurological effects from those high numbers.  Unfortunately, there is also a possibility that they may need to give Riley a pretty strong drug (the exact name has escaped me) to knock her out for the MRI, but they only need to do that if “the babies are active and moving around a lot.”  Well chances are…knowing crazy Riley, she will need that drug.  The thought of that does not make me happy.  Finally, the nurse practitioner discussed that although Riley may surprise us, she will likely be going home on O2 and a monitor, but we’ll see what happens.  This I’m fine with…I just want to get her home.  However, it sounds like we need to go back to our previous way of thinking…if Riley gets out before Sept 28th, her due date, it will be gift.  We need to expect that she’ll likely be discharged closer to her due date.  Looks like we’ve re-entered the never-ending sit and wait game again…actually we never left it.

First bottle feeding today went ok.  One choking episode, causing Riley to turn a bit “purple” (as Ian would say), with a desat into the lower 70s, but she came back up with some stimulation from mom.  We hung out for a little while  afterwards because she was awake, and she’s way more fun when she’s awake:)  Second bottle feeding also went ok…just needed lots of pacing, as she was acting a bit greedy and being a little animal.

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Woah woah woah…hold up…what is that sequence I’m supposed to follow when I’m eating again? All I remember is that I’m supposed to breathe…

Riley did pretty well for the remainder of the day.  No crazy b’s or d’s.  She gained more weight (shocker) and is now 6 lbs 2.6 oz.  Daddy called weight watchers immediately after hearing this news…

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I ended the day with meeting my work friends for dinner…which turned into the baby shower I never got to have! Adorable giraffe cupcakes and lots of nice new blankets, towels, homemade nursery decor, and adorable, sassy clothing for Riley Mae.  She is SOOO spoiled.  It was amazing…you guys are awesome.  Thanks:)

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Hey, where’s my cupcake?

       

 

Sunday, September 7th – 37 weeks and almost 2 months old!

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Oh God…I’m going to be how old tomorrow??

Riley is 37 weeks today…next week she’d technically be considered full-term.  How weird is that??  Wow, did you come early, girlfriend.

Ian and I came in to the hospital a little later today, but we walked in just as they were rounding on Riley.  Nothing new today…second set of vaccines will be given, O2 was weaned again to .02, and continue working on bottle feedings.  Boring stuff…except…

Today is also BATH DAY!!  Woohooo!!  Ian’s mom and sister came to visit and they got the chance to witness the bath.  It’s pretty fun and pretty darn cute (if I can say so myself), although she was a little fussier than she was the last time, making a liar out of Ian and I as we were commenting to Ian’s sister and mom that “she loves her bathes and doesn’t even fuss…”  Well apparently it depends on the day…:)  She was content as ever afterwards, and smelled awesome.  Love bath days.

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Had a feeding session with Riley this am, and it went okay.  Wasn’t great, wasn’t terrible…definitely manageable.  She had one little choking episode, but again, she only dipped down into the lower 70s and came back up with some stimulation fairly easily.  As Ian described it to his mom and sister in a very serious manner, she doesn’t really turn “blue so much now that she’s so red after the blood transfusion…it’s more of a purple color.”  Oh Ian…only you.  Anyway, she had 2 other episodes where she just decided to stop breathing, but we caught them early, and with some stimulation and some verbal reminders “Riley…don’t forget to breathe…” she recovered.  Yes, I’m sure it was the stimulation and not the verbal reminders that worked.  However, I have considered writing a children’s book for NICU babies and parents that’s titled “Don’t forget to breathe,” written and illustrated by Brooke Lang.  It will include illustrated pages that provides tips and cues that are important for these little ones who aren’t quite ready for the real world because they snuck in a little early, such as “Don’t forget to breathe when you’re in a deep sleep,” and “Don’t forget when you’re eating, the steps are suck, swallow, and BREATHE…in that order,” and even “Don’t forget to breathe, no matter how comfy you get when you’re in mom and dad’s arms,” and so on.   I’m thinking that maybe through some sort of osmosis or something, these tips will get through to these preemies if their mothers read the book to them daily, and it can be a new form of intervention in the NICU.  I’m seriously thinking about this…please don’t steal my idea:)

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I’m acting content to appease my dad…if only he knew this is just a temporary fix…

The rest of the day was fairly uneventful…Riley gained a gram and actually was a little fussy from the vaccines.  It was sorta cute, as she really hasn’t been much of a crier up to this point, and I just watched Ian continuously sticking the pacifier in her mouth, hoping it would keep her quiet and happy…it worked most the time.  Riley did have another b, which again seemed to happen out of the blue and in the absence of a d.  It’s weird and I don’t know why it’s happening.  I think she’s just messing with us.  This is Riley…continuing to keep us on our toes.  

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Hehe…totally messing with them;)

Saturday, September 6th – No use crying over spilled milk…

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So I started out my day with my typical morning pumping session, which occurs while I’m still sitting in bed.  However, this morning’s session was a little unique…I had an accident.  As I was DONE pumping and going to remove the tubing, the one bottle (of course the full bottle, which came from my good side) fell off the connector piece and spilled all over me and the bed.  Nice way to start the day, Brooke.  Thank goodness I’m not hurting for a milk supply:)

Went to my workout class this am and then headed into the hospital to attend rounds.  Riley had a good night, only having 2 d’s, both of which she was able to bring herself out of.  The nurse informed me that Riley did well during her last two bottle feedings as well, and so far, she is not showing any adverse effects from the vaccines.  The doc decided that they will be giving Riley her second set of shots tomorrow (rather than today) to spread them out a little more.  Probably not a bad idea.  The continued goal is getting those bottle feedings down, and otherwise, everything remains the same.

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Got milk?

Both bottle feedings went pretty well today.  Riley just needed a little pacing (moreso during the 2nd feeding) because she gets overly eager and greedy and chugs away, forgetting to breathe.  She had a minor choking episode during the initial feeding but recovered pretty quickly…so quickly I almost don’t even want to call it a choking episode.  Daddy held his little girl for awhile afterwards, and they bonded, talking about how they’re going to team up against mom once she gets home.  Typical.

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Diaper changes remain the same.  Lots of poop, frequent gas, and daddy jumps every time she produces either of them while we’re in the middle of a diaper change…partially because he’s afraid it’s going to get some on him (God forbid), and partially because it’s so loud it literally scares him.  It’s hysterical, but kinda sad.  We often go through at least 2 if not 3 or 4 diapers in one change because it’s like the never ending production.  We’re never going to be able to stock enough diapers at the rate she’s going…

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I’m like my daddy….I don’t like to be rushed…

Overall, today was a great day.  Riley weighed in at 6 lbs 1.2 ounces, and continues to be pretty much unaffected by the vaccinations.  She did end up having another b (bradycardia) into the 70s around 5:15pm, which was shortly after her feeding.  She also had a little desat with it, dipping down into the low 80s.  She did come back up on her own, which is always a good thing.  Oh well…can’t let it ruin an otherwise good day.  No use crying over spilled milk or a little b, right?  It is what it is….and she’s yet another day stronger.    

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