With every down, there’s an up…with every hurdle came a stride


Over the past few days, I’ve read over my blog in its entirety to remind myself of the crazy journey we went with Riley during her 73 days in the NICU, and to remind myself of how far she’s come. After reading it, I realized that with every rough patch, every hurdle, and sometimes traumatic experience, there was something positive associated with it.   So I’d like to close this blog with a review of these highs and lows…temporarily take you back on this roller coaster of a ride that we’ve been on, as we are about to begin the next phase of Riley’s life….A different roller coaster, a different ride, to home sweet home.

It began with the loss  of my grandmother a couple days before my admission into the hospital.  I was unable to make it home to be there for my family and attend her services because I was in the hospital, and this devastated me.   However, this loss  meant that Riley gained a guardian angel to watch over her, and it became a given that Riley’s middle name would be Mae, as this was my grandmother’s middle name.

I obviously had a very unexpected, preterm delivery for reasons we will never know. However, we were able to hold off Riley’s delivery for a week while I was in the hospital, allowing Riley to get the dose of corticosteroids that helped to speed up the development of her lungs and other organs, increasing her overall chance of survival.  I also had an easy healing process and have been lucky enough to be able to provide her with what seems like an unlimited amount of breast milk since the day after I delivered her.  Not every mother is so lucky.

Although there have been times where I feel like I’ve been mourning the loss of the full-term pregnancy I never got to have, while basically living in a hospital for the past 2+ months, observing countless pregnant women every day as a reminder, we got to meet Riley early and she’s had extra days on this earth.

We will always have emotional scars from the night of Riley’s pulmonary hemorrhage…the extremely rare pulmonary hemorrhage with a high fatality rate.  However, I think this traumatic experience gave us a different perspective during this journey, viewing other obstacles that Riley/we faced in a different light, allowing us to appreciate and celebrate what may seem like the smallest gains to the average person. Not to mention Riley gained her first BFF out of that whole experience;)

Riley had those dangeriously high bilirubin numbers, requiring the exchange transfusion and putting her at increased risk for multiple other medical complications. However, we watched Riley beat the odds, test after test coming back negative, as she didn’t have any of the medical complications typically associated with premature infants (NEC, significant brain bleeds, retinopathy of prematurity, patent ductus arteriosus, or difficulty with weight gain).

Despite the respiratory support, feeding tubes, phototherapy, PICC lines, etc. that Riley needed to grow and survive in the world she wasn’t supposed to be a part of yet, it was pretty amazing to watch her go from complete dependence on a machine, breathing for her, and then helping her to breathe, and later seeing her free of tubes…no tubes down her throat or in her nose (except during feedings), breathing on room air…breathing on her own.  How amazing.  Those things most parents may take for granted when their little ones enter this world.  She needed a feeding tube to provide her with the necessary nutrition and hydration in order to grow during those first few weeks of her life.  So I felt such an adrenaline rush after that first bottle feeding, as it was the first time my daughter could take something by  mouth…another sign of maturing…maturing into the newborn she almost was. God, those damn dings and alarms from the monitors were at first terrifying, then they sort of just became a part of the everyday background noise and a constant reminder that we have a medically compromised child.  At times, these alarms would drive us absolutely crazy.  However, we watched the decline in those dings and alarms each day,  appreciating mere silence like never before, observing the decline and near elimination of b’s and d’s, again demonstrating maturity.

We weren’t able to see Riley’s face for several days after she was born because of the continuous phototherapy that was required to help reduce her bilirubin count.  Just a few days ago, we were able to finally see our daughter.  We could look at her face, and admire her adorable little features, chubby cheeks and all, being free of all medical contamination.    Merely being able to see my daughter’s face and watch her while she’s sleeping or awake is such a privilege…it’s such a  remarkable gift to have as a parent.

Ian and I were unable to bond with Riley in the beginning of her life due to her being so fragile…and also feeling a sense of fear…fear of over stimulation or that we were somehow going to break her.  We had a limited ability to care for her, and had to watch nurses, who were at the time strangers, doing those things we were supposed to be doing as parents.  However, I now realize that a parent-child bond is not something that happens in a day, or even two days…it is something that develops over time and becomes stronger with time.  This is a bond that Ian and I will never take for granted, and I feel our bond may be even stronger with Riley because of the hardships and challenges the three of us have already experienced as a family.

As unexpected and at times, as unwanted as this NICU journey was for us, it is now a part of us.  It will be a part of what defines Riley…her strength, her courage, her feistiness, and all those other qualities that have defined her as our little miracle fighter.  This girl was brought into this world to do amazing things, and there is no doubt that she will do exactly that.  We can’t wait to continue on this journey with our little one, watching her evolve into the person she was brought onto this earth to be.

I hope you all continue on this journey with us.  I will be writing another blog (rileymaelang2.wordpress.com), so I can continue to provide an ongoing update on our super girl.  It may not be an everyday blog, as I believe I may have less time on my hands as I’m now fully responsible for Riley:)  However, I hope to keep you informed on our continued ups and downs, obstacles and hurdles, and leaps and bounds.  Thanks for coming along on our crazy journey.


IMG_2225 IMG_2246

Thursday, September 18th – Home sweet home

Made it:)

Well, today is the day.  We finally get to be those parents…those parents that walk out of the hospital with our kiddo in her car seat carrier, big smiles on our face, excited to start a new chapter in our lives.  However, when people observe us leaving, they will look at us just like all the others…no one will know our story…no one will know what we have been through over the past 73 days, and what a little fighter we’re carrying out in this car seat.  She’s not just any little newborn.

Ian and I survived our nesting experience.  I think we may have gotten a total of 2 1/2 hours of sleep.  We set our alarms to wake up every 3 hours (which is the schedule she’s been on in the hospital) to feed and change Riley, and thats what we did.  The feeding has become such a process…by the time I attempt breast feeding, then bottle feed, and then pump, I have an hour and a half until I have to start the process all over again.  It’s exhausting…but it’s so worth it.  We’re bringing our little girl home today.

How much longer is this discharge process going to take??


Went to my final day of rounds today, and it was short and sweet…all about the discharge plans and the follow-up Riley will need over the next several months.  It’s sort of a blur, and I have to back through my paperwork, but all I know is she has a few different clinics and disciplines she needs to follow up with.  She already has her first pediatric appointment tomorrow.  These hospitals and clinics will probably be the only places we’ll be taking her any time soon, so we’ll treat it as a fun field trip:)


So we were finally about to leave, and another nurse stopped by our nesting room to say goodbye, and became teary-eyed as she did.  I held it together (sort of)…until we were walking through the waiting area…that same waiting area we ran through the night of Riley’s pulmonary hemorrhage in complete horror, not knowing what challenges lie ahead, and the same waiting room we’ve been walking in and out of day after day for the past 73 days, and the receptionist just immediately started clapping and yelling “Yay!” as we walked through the door.  Well I was done for.  It was emotional.  Everything about this day is emotional.  Happy tears were shed today.  It’s all good.

Ian sat in the back of the car with Riley on our way home, and I was a bit of a nervous wreck driving.  We now have precious cargo for goodness sake;)  Anyway, we made it safely and got Riley in the house.  It was beyond surreal.  We were finally home, with our daughter, and it was official…we are a family.  Riley immediately settled in, and occasionally glanced around as if she was wondering “Where in the heck am I now?”  We showed her her new room and broke in many of her new toys already.  She seems to love them all.  Ian’s already had a few “tummy time” sessions and is trying to teach her to say “dada.”

tummy time turned into nap time…

I’m going to end today’s post here, because I’m pretty wiped and don’t have much else to say.  However, I did want to write a final post as a part of this blog, and that will be coming soon.  I know many have wondered if I’m going to continue my blog, and I’ve decided since this is a new chapter in our lives, in Riley’s life, I will be starting a new blog, separate from this current one, that will allow everyone to be included on Riley’s ongoing strides, weird quirks, and the ups and downs we may continue to experience as parents of a premature infant.  So…to be continued…

Check out my new toys!


Wednesday, September 17th – Sombrero’s and Nesting


Today was a bit of a whirlwind.  Started out with rounds, and the plan remained unchanged.  Then it was feeding time, and right as I’m about to start feeding Riley, the home O2 rep called me and asked if he could come back to Riley’s room and give us our O2 supply and explain how to use it.  So there I am feeding Riley a bottle, praying she doesn’t have an issue because I”m not watching her at all, as I’m trying to watch the guy demonstrate how to use the O2 device.  Never too early to begin multi-tasking I guess.  I think I got it down.  We’ll find out…

Riley was wide awake after her feeding, and she was sitting on my lap, with her bright eyes looking up at me, making a variety of facial expressions, and the next thing you know…SPLURT!  Riley’s first “on-person” explosion.  The Riley stench took over immediately, so I went to change her, and low and behold, there was poop all the way up her back, basically up to her neck.  Good God child, how did that happen?!?!  I decided to just strip her on the spot and give her a washcloth bath, because she was pretty gross.  Following this stinker episode,  I asked some of the NICU staff if they would be willing to keep her, and we actually got some offers;)

Oh God…what did I just do??!?! That couldn’t have come from me.

The bath went ok.  Like I said, I decided to just do a washcloth bath instead of the tub bath because I needed to do something quick and easy, and I plan to give her a good bath once she comes home.  Well, she hated it.  She was pretty fussy and gave some mean looks after it was all over.  I gave them right back, and I explained that she did this to herself.  I don’t think she understood.

Didn’t enjoy that bath, mom. Where was the tub and where was dad?


The nurse and I came across a revelation during the next feeding.  Where has the nipple shield been all my life?  Without getting into too much detail, lets just say a nipple shield is basically a sombrero for your nipple (I know you probably won’t be able to look at a sombrero the same ever again, but I’m sorry, that’s what it reminds me of), and it mimics a bottle nipple, and sometimes it makes it easier for babies to nurse.  Well it sure worked for Riley Mae.  It was the missing link.  With the nipple shield, it was like we’ve been doing this whole nursing thing for months, and she was pretty satisfied afterwards, taking only an additional 25 cc’s from the bottle.  Some success.  Finally.


So last night was my final opportunity for a good night’s sleep, and I ended up not sleeping well because my mind was racing.  Thoughts of what still needs to be done, questioning if I’ve remembered to do everything, daydreaming about what it’s going to be like to have Riley home, etc.   The reason last night was our final chance is because tonight Ian and I are “nesting” at the hospital.  We’re sleeping in a room down the hall from the NICU, with Riley in our room.  It’s sort of like a night of transition that’s offered to NICU parents, and we decided to take them up on that offer, since this kid is going to be our responsibility starting tomorrow.  These are the same rooms we stayed in during the first week of Riley’s life when we were too afraid to leave the hospital.  It’s weird how everything has come in full circle, and we’re right back where we were….but now Riley is breathing on her own, and she’s a chubby, happy, pretty darn healthy baby, and we’re a day away from taking her home with us.  

This doesn’t look like home…where are we?

As we were sitting in our room, and Ian was feeding Riley (yes, he had his first bottle feeding experience tonight and it went great), Riley’s BFF nurse came to the door to say goodbye.  It was an emotional goodbye, as it’s obvious she cares deeply for Riley, and she also bought Riley a Dr. Seuss book and had it signed by many of the NICU nurses who cared for Riley during her 74 day stay here.  How amazing.


Tuesday, September 16th – So close….


One day closer to home.  Riley passed the car seat test with flying colors, and we got confirmation that her MRI is normal!!  Thank goodness!  Guess the MRI didn’t pick up on the little bit of craziness that hides deep within her:)  The only thing left to do is her hearing screening, and the plan remains the same, with discharge home on Thursday.    I updated Ian with the good news via text this am and he responded back asking “What boarding school should we send her to?”  Not nice, Ian.   Let’s at least first see how she behaves once we get her home and she’s spent a little time in the time-out chair.

You’re not sending me to boarding school, dad!!

Several nurses have stopped in to say good luck and goodbye to us already.  Leaving here is definitely going to be a little bittersweet, as we will definitely miss the support we’ve had and the friends we’ve made with some of the staff during this crazy journey.  We’ve even had a few requests to install our own camera system in Riley’s nursery at home so they can log in and watch her when they want to.  We’ll see what we can do about that;)  We will certainly look forward to seeing everyone again at the annual NICU reunion that takes place at the Pittsburgh Zoo. I can’t even imagine how different Riley will be then, as the changes we’ve seen in her over these past 2+ months have been remarkable.

Feedings went as usual today.  No luck with the breastfeeding still, despite multiple attempts, but she’s rocking the bottle with very few issues.  She’s now taking anywhere between 60-70cc’s during feedings, adding to her ongoing chunkiness:)  Speaking of that…she’s now up to 6 lbs 12.4 oz!!

catching flies…

Riley passed her hearing screening, and just needs a follow-up examination in a year.  Another item checked off the list!  Looks like we’re ready to go!  Let’s do this.

Well what are we waiting for???


Monday, September 15th – Just Another Manic Monday

Geez, these cheeks are getting a bit out of control…

Riley continues to do well…the nurse mentioned she did give Riley O2 during her feedings this am.  I explained why I felt it’s not really an oxygen issue with her, and the nurse informed me this is something we will discuss in rounds so that we’re consistent with Riley’s care and it’s not so all over the place.  Sounds like a plan.


During rounds, still no official MRI results but the preliminary report showed no abnormal findings.  Although it’s not official, this is really great news!  They discussed the oxygen issue, and the decision was made to keep Riley on O2 during feedings only (nursing or bottle).  She will go home with the same “prescription,” O2 during feedings, and we will follow up in the apnea clinic in a month to see if she continues to need the oxygen.  They also decided she won’t be going home on a monitor, which I guess is good.  The reason I say “I guess” is because she won’t have the leads and wires to deal with which is great, and I certainly don’t feel it’s necessary for when she’s awake or feeding, but it’s the night time I’m a little bit worried about. However, Riley hasn’t had any b’s or d’s that haven’t been related to feedings in quite some time, and if the docs aren’t concerned, I shouldn’t be either.  We have one of those video monitors at home that has a sensor that we can attach to Riley and it will detect if she stops breathing.  That should suffice.  Finally, the car seat test and an audiology exam will happen before discharge, which is tentatively scheduled for Thursday, as they would like to monitor her for 72 hours on this new, more consistent schedule.   Ironically, September 18th (which is Thursday) was my original due date before they gave us the 28th after our initial ultrasound.  Weird how everything happens.

Wait, what happened?

Feedings went ok today.  A little choking episode during one, but no biggy, and she actually couldn’t finish her bottle during another feeding because she was pooped (not literally, for once).  This is because she was up partying for 2 1/2 hours in between this feeding and the previous, and I think she wore herself out.  The nursing ordeal is the same…she’s using her hands more than her mouth, and she treats me like a toy rather than her mother trying to provide her with sustenance.  She will learn one of these days….maybe.

This is my nursing position…really into it.

So I went for a little walk in the afternoon to go get a coffee, and as I’m walking into Peet’s Coffeehouse, I hear “Hi Brooke.”  I turn around, wondering who I may have run into, and what do you know…it’s the guy who works at the Starbucks (located across from Peet’s Coffee), who has apparently written my name on too many coffee cups.  It was kinda creepy, and also sad…another reminder that we’ve been here a little too long.

Once we got home, Ian and I sat down to relax a bit.  I logged onto the nicview camera website, and there she was…Riley Mae in her car seat, eyes wide open, looking like she’s ready to go.  It was adorable.

Almost home, Riley Mae.  Another day closer…another day stronger.

What my shirt says…

Sunday, September 14th – Technically “full-term” with home in sight


Riley kept her promise…she was a good girl last night and didn’t have any issues.  The nurse mentioned that she needed a little bit of O2 to get her through her last 2 feedings early this am, but otherwise everything remains the same.  She ate 60 cc’s during her last two feedings, and continues to pack it on, weighing 6 lbs 6.5 oz.  She’s 38 weeks today, with her actual due date rapidly approaching.

During rounds, they continue to mention that discharge is close, but we still don’t have an exact day. We will get the results of the MRI tomorrow and Riley will also have her car seat test!  This is huge because this is the final test that all premies must pass before being discharged.  They just put Riley in her car seat for 90 minutes while she’s hooked up to the monitor and make sure that she doesn’t have any b’s or d’s.  If she fails this test, then we just strap her on the roof of our car and hope for the best.  Kidding.  If she doesn’t pass, they may try repositioning her and there is even an option for a car seat bed.  She’s going to pass….this I’m not concerned about.  I’ve secretly been putting her through the test already, she just doesn’t know it:)

Excuse me…What don’t I know??


Riley’s bottle feedings overall went well today.  She’s definitely getting the hang of it, and having less desats.  She didn’t require any oxygen during her feedings with me, but she was pretty sleepy during the one feeding and occasionally she would have one of her “forgetting to breathe” episodes.  However, nothing gets past her ma, so I rubbed her back to get her to breathe again and was able to catch it before the monitor was able to read her dropping, preventing the alarm from going off and her from having a true desat.

Also attempted breast feeding again.  We give it a go before each bottle feeding, and at least always make an attempt.  Let’s just say we’re working on it…I have faith that she’ll get the hang of it and it’s just going to be a slow process.  She didn’t beat me up today, which I appreciated;)

Hehe…wait til tomorrow…

Everybody know what time it is?  No, not tool time.  BATH DAY!!  It might have been the smoothest one yet, except for Riley deciding to take a stinker right in the middle of the first attempt.  After a water change, it was smooth sailing and she loved it!   Not a single fuss out of her, and if she could smile with a purpose I think she would have.  After we were done with the bath, we realized that may have been Riley’s last tub bath in the NICU.  Maybe…hopefully.


Riley’s weigh-in tonight revealed 6 lbs 9.4 oz!!…And it’s all going to her cheeks, chins, and thunder thighs:)


Saturday, September 13th – MRI and a sleepy Saturday


No issues overnight – another night of a well-behaved Riley.  Feedings continue to go well, and she hasn’t needed any oxygen.

Riley will get her MRI today at 11am.  Apparently they give Riley the sedation medicine before she goes down for the procedure, given that the machine is loud and they don’t want her moving too much.   She will likely be zonked for a good portion of the afternoon, requiring her to have the nasogastric feeding tube placed again just for administration of the medication and a feeding or two until she’s more alert.  We will learn the results of the MRI some time on Monday following the medical team’s discussion with the radiologist and neurologist.


Riley’s bottle feeding (the only one I gave her today) went awesome!  She hardly needed any pacing and downed all 50cc’s without any d’s or choking.  YAY!  I didn’t attempt nursing today due to timing issues with the MRI (I swear it had nothing to do with the boxing match and pinching ordeal from yesterday)😉  We will resume that adventure tomorrow.

Today’s post is a short one, because Ian and I will be attending a wedding this afternoon that we’ve very much been looking forward to, as they are good friends of ours.  It will likely be our last shebang before the little one comes home.  As excited as I am to do something “normal” and get out for a bit, I know I’m going to miss my little girl today and will probably worry about her just a bit.  However, Riley and I had a chat this morning during our snuggle time and she promised me she will be on her best behavior.  I sure hope so Riley Mae.  

please don’t leave me