Lightning Bolts and Moonlighters

Levi says, "Happy Independence Day America!" A friend got us the adorable baseball outfit and the NICU nurses got him the hat.

Sorry for the silence this week.  I have gotten to the point where I can no longer put my life outside of the hospital on hold (I feel like I may have already said that in another post… It’s a reoccurring thought I’ve had… But then I put it off because I think Levi’s close to coming home… Then there’s a setback and I find myself thinking it again).  So, I had one or two appointments for various things every day this week.  I had another blog post I was going to do that was the last half of this post.  I never got around to editing it!  It was just about how my husband spoiled me for my anniversary anyways. =P

Here's a sneak peak at what that post was supposed to be about. The Hotel Monaco

Let’s see… Other things that have happened in the last two weeks… We were rear ended by a 16 yr. old who was then rear ended by a 60 yr. old, both of which we felt…  I had to have a “D & C” because… Well there is no delicate way to explain what that is for my male readers so I’ll just let you google it or click the link if you want. Basically I was still having a lot of pain from the pregnancy and had to go under general anesthesia for an hour or so to get that fixed (the Wikipedia page I linked says it’s used for first trimester abortions and I would just like to reassure you that is not why I had it done). I’m relieved to not be in pain anymore, but OMG my whole body hurt for days with those two things compounded, especially my neck and back.  It took me a few days longer than I expected to recover from that so there were a couple of days I couldn’t stay with Levi for more than an hour and at least one day where I couldn’t make it to the hospital at all.

But, Levi is doing well.  He is eating a special formula that is “pre-digested” and his body is tolerating it.  He’s having trouble “nippling” though.  That is something expected with babies who have Down syndrome and also babies who haven’t really eaten in a while.  A nurse pointed out that for the first 8 weeks of life we were constantly shoving tubes down his throat and now we want him to just willingly swallow an odd smelling (and I assume tasting) formula.

So we are trying to be patient with him as he learns how to eat.  I’ve been procrastinating this post because I think I may make this next part more confusing than it needs to be… Let’s see if we can muddle through this…

They need him up to 75 cc to be on “full feeds”.  He was increasing by 3 cc every other feeding and it was going well (“well” being relative; it was still a struggle and so insanely stressful as he gagged and choked and we all held our breath through every feeding, praying for no more bloody diapers or bile in his stomach) until about 40 cc.  Then he just started eating less and less at each feeding.  This threw me into a panic for a couple of days because that is how it always starts… He does well, then suddenly starts eating less and less and before you know what’s happening, they’re removing more intestine.  But I truly believe he is healed and that helped me stay at a reasonable level of panic.

I’m not sure I can explain the feeling well enough…  It’s almost like trying to describe the smell of your grandma’s musty attic… It’s stale and stifling, intrusive, overwhelming and familiar.  Once again something is wrong and no one knows why.  Even though it is a much more minor thing than unexplainable loss of massive amounts of blood, it is still a too quickly recognized feeling.  One person suggests he doesn’t like the formula taste but then another points out that he’s eaten up to 40 cc for 4 days just fine before.  Then another says the nipple on the bottle might be too soft or too hard or too fast or fat or whatever.  But again another points out that it’s the same nipple we’ve been using for the last 4 days.  They’ve changed the formula brand and the bottle a couple of times.  Now the nurses are nagging me to demand that they stop changing the bottle because they think it’s confusing him.  They’ve called in the surgeon (again) and the GI specialist (again) and they’ve even had two separate physical therapists do feeding evaluations and give their expert opinions… While this is going on and everyone is standing around scratching their heads, he got all the way down to only nippling 5-10 cc at each feeding.

Today’s nurse said last night’s Dr. had wanted to talk to me but I missed her somehow during the 3 hours I was there. She said she is a floating Dr. so I don’t think I’ll ever get to talk to her.  The nurse said the Dr. doesn’t belong to any one hospital and she travels all over the country.  “They call them moonlighters,” she said.  Perhaps I’m reading way too much fiction right now but I instantly pictured this tall beautiful Dr. floating around the NICU, with her white jacket long and flowing, stars in her hair and moonlight on her shoulders…

…Uh… Back to reality…

Today I finally had no appointments and was able to go spend 8 straight hours there.  By today I regretted having any appointments at all and feel I really should just be there for every single feeding while simultaneously being with Jayden (I don’t actually need to eat or sleep or spend time updating my blog, haha).  For the two feedings I did today he did MUCH better and took 40 cc and 35 cc so hopefully things will continue to improve like that.

Meanwhile, they did put a “cor-pack” (feeding tube into his stomach via his nose) to “gavage” (slowly force feed) the rest of the amount he should be taking at each feeding.  Whatever he doesn’t “nipple” is given to him that way.  When he first starting eating less, we were up to 40 cc. but then suddenly he wouldn’t take more than 25 cc.  They brought the required amount back to 25 cc that day but continued with increasing the amount by 3 cc every other feeding no matter how much he eats by himself.  They are doing this because they need to get him up to 75 cc so they can take the broviac out.  His broviac is a long term IV line they put in during surgery so they don’t have to keep poking him every time the line blows out, which his was doing a lot because of the amount of nutritional fluids he needed as a full term baby.  It enters his skin in the middle of his chest and travels just below the surface to his neck, where it enters the carotid artery and then travels to just above his heart.  It is VERY important to keep this from infection and the longer it is in, the higher the risks go, so they want to get it removed as soon as possible.

One Dr. has mentioned putting a tube directly into his stomach (through the skin-ANOTHER surgery) if he continues to not eat well, but unless they can give me several EXTREMELY good reason why that’s necessary, I think I won’t allow that.  He can come home with a cor-pack and I’ll do what it takes to teach him to eat at his own pace.

And then there is the moment where I am pretty sure I was almost struck by lightning.

We have been having some insane thunderstorms here for the last few days.  I was in my car and this flash of light was so bright I could almost feel its heat and immediately the pounding thunder shook my car like someone had turned on 3 sub-woofers at the same time.  The four pedestrians across the street actually dropped to the ground and I burst into hysterical laughter!  I could not stop laughing for about 30 minutes!  I’m sure I was a bit shaken, but also I just thought it would be a fitting end to the year I have had.

If someone came up to me and told me the story of this year as their own, I honestly would probably think they were over exaggerating at best, and a pathological liar at worst.  Because, really… NO ONE has luck this bad! Haha!!!  At this point, every new wave of stress is just ridiculous (there are more things going on than I could even put in a blog-just incase you think I’m being dramatic =P ).  Some might think I’m so strong for trusting God still at this point, but the truth is… there is no other option.  I have literally gotten to the point where I have no other choice but to throw my hands in the air in surrender and say, “Ok God, you do your thing and I’ll just wait here.”

In the meantime, I’m pouring love onto both of my sons every chance I get, and learning more about myself and what I am capable of everyday.  These two things, combined with the prayers and encouragement I have received from you guys and the AMAZING things those near me have done to help, make me smile more times a day than I can count.  Thank you guys so much!!

Levi playing with Mommy and his new mirror his primary nurse got him after two great feedings in a row!


Jayden and Josh picked up this lovely game today. Jayden LOVES pushing ALL the buttons =)

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4 Responses to Lightning Bolts and Moonlighters

  1. Ashley says:

    So glad for the update, thank you. Your boys are both so gorgeous!

  2. Pro says:

    Thanks for taking the time to share your thoughts. I love that you have such a strong sense of conviction with your motherly instincts…that if its optional, you’re not going to let them force you into anything. Go with your gut, girl.
    Also, the lighting thing – while a bit scary – is really funny! I giggled…the visual is just too good! Lol
    Love you.

  3. Shelby says:

    Just got caught up with your blog posts hunny and Im glad things at least seem better and I hope Levi gets to come home in your arms soon. I still would love to meet him and see you but I know you’ve been so busy anywho shoot me a text if a time comes up when I can come visit. I love you so much and although it erks me that you’ve just had to leave it with God because your year has been so full of challenges I understand and think it really shows your amount of faith to trust God even when he is kinda giving you no choice (if that makes sense). Loves you and your family! Hopefully hear from you soon.

    • Amanda says:

      lol. Well I suppose there’s always a choice! I will text you soon and you should definitely come meet him!

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