“So long, farewell, Auf Weidersehen, goodbye…”

April 5, 2012 at 11:07 pm 6 comments

Later dudes. I'm outtie.

It was with a heavy, yet still “holey” heart that we headed back home after 45 long days in the NICU. Yes, after a few false starts and two nights in the “Panic Room” (I’ll get to that a bit later) we were told by the infamous Dr. Wertz, in the most loving way possible, to “get that kid outta here ‘cuz he is taking up valuable space in my NICU!”  I must admit he had a point, Rex was pretty stable and the team there was quickly becoming some of the most expensive babysitters ever.  Granted, I am pretty sure I hit my max out-of-pocket with insurance about 43 ½ days ago.

I must first apologize for the delay in Rex updates.  I know some of you are following this drama play out in the same way that (Dane and) I followed the Bachelor this past season, but my brief hiatus was the result of a few rather turbulent weeks. At times Rex was progressing so well that I couldn’t put him down long enough to pull out my laptop, at other times I was once again convinced that Rex was going to sign his own discharge papers. (When is it you learn cursive again?)

Anyway, for those of you still tracking, here is the 4-1-1. (from a tired and kinda scatter brained new mom, so bare with me)

To begin with, so much has changed since I last posted; for starters, I cut my hair. I never really thought I would be one of those moms who traded in their long flowing pony-tail for a pony-nub, but alas, here I am.  I also used to lament that I would never post every one of my kids’ milestones on Facebook, clearly I’ve sold out on both accounts.  But again, you probably aren’t here to hear about my hair…

As for Rex, for the most part he continued to thrive in the NICU. He had sustained weight gain, the good, double chin, and thunder thighs, type of gain.  Poor guy started to become a little self-conscious when he saw the scale rolling towards his crib, but who wouldn’t.  Very few of us enjoy being stripped down to our diaper, weighed, and then, on top of all that, having our weight be broadcasted on the whiteboard for the entire world to see.

While the weight gain was promising, the challenge was that Rex was still being tube fed; not really something we could sustain at home.  (I could barely look at his umbilical cord scab, you think I could shove a tube down his throat?!?) Luckily, Rex decided to take matters into his own hands and pull his own tube out, commencing one of the more emotionally challenging times (for me) to date. Yep, now all eyes were on me to see if I could get my kid to gain weight sans the tube.

In the beginning I was pretty confident, spending upwards of twelve hours a day in the NICU just to get as many feeds in as possible before heading home.  I mean after all, why would it not work; Rex was the “Hoover Fish”.  Three days into the “Feeding Challenge” Rex was packing on the oz’s (ounces), and having no issue. It was time to “room in”, time to go home. Or so we thought.

“Rooming in” seemed innocent enough. You, your baby and the mangy stuffed bunny that your brought on day one thinking (incorrectly) that your baby would love and cuddle it like you did 30+ years ago, moved into a room in the back of the NICU to practice being a family.  Usually, this lasts only one night, but not always.  (Note, the foreshadowing.)  Nonetheless, I like to refer to this room as the “Panic Room” because that is how you feel back there.  Instead of being out with the general population chatting about Jessica Simpson and her excess “water weight” (whatever!), you find yourself sitting alone in a windowless room watching reruns of “The Deadliest Catch” and my personal favorite, FishTV.  There is a bathroom, but to get to it you have to trip over Rex’s monitors, a pumping machine and several Whole Foods bags full of stuff that needed a refrigerator of which there was none. I wouldn’t quite compare it to the 5-star Hilton to which I have become accustomed.

Almost immediately upon entering the room our confidence started to wane. Out of nowhere Rex started dropping his heart rate so low that it was registering “Brady’s” on the monitors.  Rex was becoming inconsolable, refusing to eat, screaming and crying if we forced him to.  Rex was also having a hard time “making potties” as on his own.  Suddenly the weight we had worked so diligently to put on was slowly falling away. It was a unanimous decision that Rex was no longer ready to go home.  I was completely heartbroken at the thought of a continued indefinite stay in the NICU. I believe it was at this point that I hit “rock bottom”; at least I hope that is what it was because I don’t ever want to go there again.

By the next morning we were back to square one with a lot of unknowns and a baby whom, once again, needed his feeding tube put back in.  I, the emotional wreck, needed to get out and clear my head so opted to hit a nearby running trail to regroup. The moment I started down the trail the skies opened up and we had ourselves a little monsoon. Go figure. Oh well, at least the crazy, toothless man on his bicycle didn’t hit me with his forty of Old English when he went cruising by (shouting profanities).

I think it was at this moment that it became evident that I needed to take that mangy bunny home; it was aggravating my allergies.

But as so often is the case in the NICU, two blueberry bagels and a Subway sandwich later and things had changed for the better. All the repeated head scans, blood tests, urine cultures, etc. came back (even better than) normal and a new doctor, Dr. Sosa had come up with a plan to get Rex eating and back home again. Basically, as a result of his heart condition, breastfeeding exhausts him.  A (hopefully) temporary solution was to (still) feed him breast milk through a bottle and reduce actual breastfeeding to just twice a day. While not optimal in my mind, I have grown to accept the fact that Rex needed this. Apparently preemies are rarely sent home breastfeeding exclusively; at least that is what they tell people like me so that I would stop monopolizing all the tissue boxes in the NICU (if you catch my drift).

By Thursday our little Hoover Fish had taken to the bottle like Myles to his (annoying) squeaky ball.  We were cleared to go home.  Once again I was asked if we wanted to “room in”, to which I replied, “not a chance in hell”.

Rex will still need surgery to fix his heart, but we are able to wait until he gets a little bigger for that. Ironically his Stenosis is getting more “stenosis-y”, thus temporarily counterbalancing the VSD. We have met with the heart surgeon and he seems like a cool guy except for the fact that he kept referring to Rex as a “her” and a “she”; but since English doesn’t seem to be his first language I’m giving him a pass. I am also going to ask if they can just circumcise him while they do the Open Heart Surgery so that I don’t have to watch. My own doctor has offered to prescribe me a Xanax to get through the OHS, but for right now I’m making like a peacock and sticking my head in the sand. Or is it ostriches that do that.

On our way home! And yes, I am still wearing that same sweatshirt six days later.

And so it was on Friday, March 30th, just days before Rex was scheduled to be born, or “-3 days corrected” (that’s the lingo we preemie parents use) we brought him home and introduced him to his older brothers, Myles and Floyd. So far all is well on that front with Myles playing the protective older brother standing guard over Rexy’s bassinet and alerting me the moment he moves, while Floyd just waits for the opportunity to taste the baby.

Aside from a little gash on the side of my head (I had a minor altercation with the baby monitor and my nightstand) and a continued lack of sleep I am feeling pretty darn good. Floyd is probably taking it the worst as he is awoken from his twenty-three hours of beauty sleep on a regular basis.

While it’s only been a short while but I will share some of my wisdom thus far on a newborn. (At least based on my experience)

  1. The world stops (for all involved) to “make potties”.
  2. Never attempt to change the diaper on a hungry baby, wait until after the milk coma. It’s better for everyone involved.
  3. Prime waking time is 2 – 4:30AM. While most of the world is trying to sleep, yours truly sucks that binky like its going out of style. “Suck, suck, SUCK!, snort, snort, suck.” And so on and so forth, for over two hours.

And my personal favorite, anticipate the kid will be hungry when he wakes up. I will translate now what I assume he is telling me during those first precious seconds after awaking from a sound sleep.

 “Food. Feed me. Food? FOOD! FOOOOOOODDDDDD! Gosh darnit I said I’m hungry! What does a baby need to do to get some damn FOOD around here!”  (All screaming)

For the next several months Rex will certainly earn his stripes as a regular out patient at almost every Specialist this side of the Mississippi. But, so far, so good. After reading through Rex’s twelve page “rap sheet” (discharge papers from the NICU) our Pediatrician couldn’t believe how well Rex was doing all things considered.  Sometimes we can’t believe it either but I have to wonder if there is actually something to this whole “power of prayer” thing. Heck, Ma Self had an entire church praying for him and as for the rest of you; I’m completely astounded by the outpouring of love and support.  Thank you from the bottom of our hearts, and a soon to be fixed one!

Clearly I never got the memo about having nothing else in the crib....(he doesn't actually sleep here yet so don't worry!)

Waiting to taste the baby.

Rex's favorite nurse, well at least until she jabbed him with a Synagis shot right before he went home! 🙂

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Entry filed under: Rex, Uncategorized. Tags: .

This week I finally hit the proverbial “wall”… Introducing the “Rexy-Plex”…

6 Comments Add your own

  • 1. Meghan Thompson  |  April 6, 2012 at 2:33 pm

    Hey Angela!

    It takes a special kind of strength and courage to get through all you have. I’m currently in a bed in a hotel room with my 2 1/2 year old snoring between my husband and me. I’m thinking how hard it all is without any special complications. But the way you write about your experience- with the humor and obvious love that shines through- it reminds me how I always thought you had the disposition of morning on a warm, bright sun-shiny day. I wish you a lot more of the joys and a lot less of the stress of motherhood and will be anxiously waiting to read about the successful surgery and how life is getting back to “normal” (whatever that is) for you.
    Best and warmest wishes to you and your family! Meg

    Reply
  • 2. Sarah S @RunningOnWords  |  April 7, 2012 at 6:29 am

    Congrats on getting Rex home! I’m so happy for you (and maybe a teeny bit jealous)! It sounds like Rex really made you earn it! If it makes you feel any better, I was also told that NICU babies very rarely come home breastfeeding exclusively and I’ve not been able to really try to breastfeed more than once a day with Charlotte. Hopefully you’ll be able to build up to it post surgery.

    Reply
  • 3. Grand Ma Self  |  April 7, 2012 at 2:24 pm

    Yay Rex! What a beautiful baby you are! I have only seen you with tubes and a giant binky covering your face. I LOVE the photo of you with your nurse. Are you smiling, or is that simply gas? (I don’t believe that old wives’ tale.) You are one handsome boy!

    Your mom told me you are gaining weight, and are even getting chubby enough to rival all those full-term babies. She has nicknamed you “Thunder Thighs”, which may not bring a smile to the faces of those who are of a certain age and/or body type. Not terribly original. You can do better than that, Angela. Please?

    Xoxoxoxo,
    Grand Ma Self

    Reply
  • 4. Mary Jane Corning  |  April 7, 2012 at 7:00 pm

    Hi Angela,
    What a cute little guy you have!
    I have just read you latest episode and I am amazed at your endurance and strength to cope with huge challenges that you face daily. You are a great Mom. You look for every positive sign and that is truly good. I don’t know your husband, but I am sure he is right there by your side and the two of you hold each other together. Rex is so worth it. He is a darling!
    Sorry I haven’t written to you sooner, but you all have been in my prayers. Retirement is not easy…I just keep too darned busy!!
    Love ya,
    Aunt Mary Jane

    Reply
  • 5. Paul Self  |  April 9, 2012 at 7:52 am

    Where Floyd is looking at Rex, an alternative headline might be: “I think I smell a dirty diaper”…Real happy to receive the posting and glad that Rex is pushing 7 pounds. I enjoyed the visit and couldn’t believe my excellent timing. I got to see first hand what excellent parents you two are becoming and liked watching the vigil of Myles and Floyd circling their new brother and making sure he felt safe and welcome.

    Love, Dad..or Pa Self..or whatever

    Reply
  • 6. Jana (Running Vegetarian)  |  April 11, 2012 at 3:29 pm

    So glad Rex is home. My son Isaac was born at 35 weeks weighing 3 pounds 4.5 ounces. He he quit growing and we had to get him out. We spent three weeks in the NICU before we came home. It takes a lot of strength to be a NICU mommy.

    Rex sure is a cutie!

    Reply

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