I am now a member of a “secret society”…

February 27, 2012 at 2:09 pm 3 comments

… one that I never really expected or wanted to be a part of – granted, I never planned on joining a Sorority either and that turned out all right. “Oh Angela, you always wanted a sister and now you have one hundred and fifty five!”, was a voicemail left by Ma Self on the fateful day I moved from measly “pledge” to bona fide “sister” oh so long ago.

No, this time around, the “secret society” I am referring to, is much less about ‘flip cup’ and ICE 101 (thank you Abby & Janet) and much more about heart monitors and breathing tubes. (Although I think that the (albeit) emotional hazing still applies) Yes, it’s been just about two weeks now, but I think you could safely say, I am officially a “NICU Mom”.  I should make t-shirts.

Bilirubin, VSD, IVH, glucose levels …. all terms that I wish I never had to allow to enter into my vocabulary but now they are all I ever seem to talk about. My life is measured in milliliters and the occasional ounce — a whole pound, well, that might be a little ambitious. I  have become an expert at interpreting medical charts before the nurses have even come in to give me a report. When the Doctor arrives and (once again) explains to me (like I never took Biology 101 in High School) how a heart has four chambers… well, I am already two-steps ahead of him.  Actually, all this gets me to thinkin’ that perhaps I missed my calling.  Who needs a bagel store/dog kennel when I could just become a Doctor post Jive?!?

So yeah, Rex (and the rest of us) have now been in the NICU for about twelve days. It’s definitely been an emotional rollercoaster with two steps forward and one step back pretty much every day. It’s been such a challenge that I find myself looking for “signs” in almost everything I do. One example would be the fact that every morning (while I was pregnant) I would eat a blueberry bagel from Noah’s. I continued down that path after I was released from the hospital but Rex kept getting bad news, so I boycotted the blueberry. I am now moving through all of the other flavors of Noah’s bagels until I arrive on the one that consistently brings us good news. So far it seems to be the “Pretzel” bagel, which is a shame ‘cuz I decided I don’t really like pretzel bagels that much. Oh, the sacrifices you make for your kids.

To bring you up to speed on the situation, Rex’s first 48 hours were pretty uneventful. He was on a breathing machine for about a day to help with Apnea and “Brady’s” which we are told was par for the course.  At first, Dane and I were feeling quite confident that Rex was going to thrive outside of my tummy. I felt like I was on some sort of mad adrenaline rush, I didn’t need sleep, I didn’t need food, I was super productive…where was this “postpartum” thing that everyone was telling me about, clearly I was going to defy the odds. Then Thursday afternoon hit…and hit hard.

All of a sudden it felt as though Rex had every issue under the sun and I blamed myself (still do) for all of them. If only I had stopped working/stayed in bed/ate more/ate differently…you fill in the blank, I felt it. (Apparently this is normal for NICU moms as I have since had this conversation with Rex’s roommates’ mom and she feels the same) Thursday night I took a break and headed to Target to buy some baby stuff (since I clearly had nothing) and between my inability to 1) read what I was buying, 2) allow my brain to process what it was I finally was able to read, and 3) go anywhere near the maternity section without feeling like a complete and utter failure, I learned that I probably wasn’t ready to venture out into the real world again just yet.  All and all, Thursday was not the greatest.

What we learned that day was that Rex was having trouble keeping his glucose levels up, usually a result of a mom who has gestational diabetes (which I did not have).   As a result he was started on a myriad of IVs that had to be stuck through his bellybutton with an arterial and ventricular line. The arterial line alone meant that we could not hold him. His bilirubin levels were also high (they are just now starting to come down, twelve days later) so he needed, and still needs, phototherapy. Rex also had a low red blood cell count. (RBCs)

The biggest items on Rex’s TODO list though were fighting through an Intraventricular hemorrhage (IVH), which is bleeding/swelling in the brain. Rex’s IVH was graded a 2/3 which means a two on the right side and a three on the left. Two’s almost always cause little issue; three’s are more of the question mark. There is nothing you can do for an IVH except wait and see.  The other major concern is that he has a large hole in his heart or a VSD. We’ve been told numerous times, hearts can be fixed (which is good news).  Anyway, it all seemed like a tall order for such a little boy.

This is the point during the “NICU Experience” where your faith is tested, particularly for yours truly, a glass “half empty” type of gal. Our doctor during the first week (Dr. Kim, not a fan) explained to us all the “worst case scenarios” and then left an already emotional wreck of a mom (me) to try and pull myself together so that I would not break down in front of Rex as that was surely not going to help things. (To date I think my “break-down-in-front-of-Rex” count is hovering around four — pretty respectable all things considered!.  Thursday night was a long one; I think Floyd took the brunt of it.

But as things do in the NICU, the second week things slowly started to sort themselves out. Rex was able to tackle his glucose issue, which meant his IVs could all come out and we could all start having some major “cuddle time”.  His IVH (brain bleed) stopped and now it is just a waiting game to see how he fared.  So far, so good (according to his physical therapist. Yes, at the ripe old age of 10-days Rex has his own personal trainer ;)).  Rex had a blood transfusion to combat the low RBCs (apparently preemies get the “good stuff”), which worked out perfectly.  Rex has also started to put on a little more weight, he is now up to 3lbs, 15oz.

Oh, and they also took out Rex’s nasal canula which wasn’t really serving much of a purpose as Rex had decided to treat it more like a binky.

Hopefully no "Lucky"

One thing that Rex is still fighting through  is his increased bilirubin levels that keep him “under the lights” on a regular basis. I figure I was also born yellow so I guess I’ll just say he inherited that from me.  (Hopefully he doesn’t also inherit “Lucky”, my big toe.)  As for the bilirubins, no one seems overly concerned with that at the moment so I just try and put it out of my mind.

The more serious issue that we learned about late Friday night is that Rex WILL need to have heart surgery to fix the large hole in his heart and something to do with a moderate stenosis (?).  Both of these issues cause congenital heart failure but both can easily be fixed with surgery and have no long-term side effects.  The cardiologist (yes, Rex has one of those as well) wants to get Rex up to “fighting weight” first of about five or six pounds but if we can’t get him there they will just do the surgery early. From what I have read (Google is both a blessing and a curse!) the heart surgery is usually harder on the parents than it is on the baby. I have no doubt that will be the case, at least for me.

As for Dane and I, we have kinda fallen into a groove at the NICU. We both take a shift so that neither one of us is at the hospital all day; this also allows one of us to be home to take care of our other babies, Myles and Floyd. (Floyd continues to be the nurse-dog while Myles continues to think only of himself…and his ball).  Dane remains well educated on all of Rex’s treatments (there may or may not have been a slight altercation with the cardiologist earlier today around a particular medication they wanted to start Rex on) while I do my best to fight off sleep deprivation and remember all the names of the doctors and nurses that are assigned to Rex (not really my thing, Dane should be lucky I don’t call him Dan or Dave or something).

Last picture pre-hives

I am also doing my best to try and figure out why I have broken out in hives. Yes, to add insult to injury I now have hives all over my face, arms and legs. That coupled with the shower-every-fourth-day look and I can promise you I will not be posting many pictures of myself to this blog in the coming days. No one really knows why this has happened to me all of a sudden but it could just be my body’s reaction to stress…. or the pretzel bagel.

As for Rex, he seems to be quite a little trooper. He has some majorly strong little legs, which I find myself wrestling with every time I do a diaper change. (Maybe I need to get myself back to “boot camp” if I can’t pin down a leg of a 4lb baby!) Rex knows what he likes and what he doesn’t like and lets us all know about it (which is entertaining actually) but then quiets down once he has been acknowledged. He is both a cuddler and a smile, which are all great things.  And even though he is SO little he has a chubby little face with a double chin and huge cheeks. Rex is also a “power sucker”, whether it’s your pinky finger, a binky, his nose cannula, his feeding tube, my t-shirt, his own thumb, mommies milkers (which amazingly have been doing their job flawlessly!), just about anything he can get that little mouth on. As I write this he is sucking away on a pacifier that seems to be almost the size of his face.

Tomorrow Rex will turn two weeks; tomorrow is also Dane’s birthday.  (Sorry dear but your present may be a little delayed this year, I think I get a free pass though!) While there are still some “bumps in the road” for our little Rexy, outwardly my pint-sized “Hoover Fish’s” perseverance has impressed us every day. I am told that preemie’s are incredibly resilient and I have no doubt that that is the case with Rex.

And so that ends our first two weeks in the NICU. We’ll let you know how the next week shapes up but I’m continuing down the pretzel bagel path for the foreseeable future.

Did I mention that Rex is now at 4lbs, 1oz!


Entry filed under: Rex. Tags: .

Our Valentine’s Day Surprise! Rex, the Million-Dollar Baby

3 Comments Add your own

  • 1. Ashley McCaughan  |  February 28, 2012 at 2:13 am

    Angela – You and Dane are amazingly strong, resilient and wonderful people. And Rex sounds like he has inherited a stellar combination of the good qualities between the two of you. Keep us posted!
    Much love, Ashley

  • 2. elisa  |  March 5, 2012 at 2:53 pm

    thank you so much for putting up your blog, it really helps us stay tuned on the journey! so sorry about the hives:-( i hope they are getting better-you are doing fantastic as a mommy:-)

  • 3. Toby O'Brien  |  March 5, 2012 at 11:42 pm

    Love the write up! Stay strong and let us know when we can visit. I want to deliver some gifts to Rexy!


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