You know it's shit like this that has caused me to leave mascara and eye liner off my morning makeup routine for the last several months. Its precisely just this sort of occurrence that, after I've had a cry, makes my temper rise and the blood rush to my face until I feel like saying swear words (just like the one I used above, only more of them...and strung together in creative ways that allow me to insult multiple generations of people at once).
The devil is a liar. A stupid, toothless liar. But he can roar. Oh, he can roar! And this morning, as I was getting ready for my daily pilgrimage to NICU, he called me on my cell. Well, Ok, so it wasn't exactly him. It was my day nurse in the NICU. She told me that in the short time since I'd last seen my daughter 1) They were having to cath her every 8 hours and 2) Her incision site has swollen to the point that they needed to monitor it because it might mean she needs a shunt.
Now, I knew that if her vents filled with spinal fluid, she'd need a shunt. But apparently, if the closure site swells with spinal fluid, she will ALSO need a shunt. Geez, like I really wanted to get a call about brain surgery today.
So, I had a short cry and wiped my face. Thankfully, there were no tell-tale streaks left behind since, as I mentioned earlier, I have modified my makeup routine to account for such outbursts. Then I got mad. I got really mad. And I prayed. And I called my husband and he prayed. And I posted on facebook to let all my friends know to pray. And now I wait. I wait for God to show up and give me strength (real strength, what I'm feeling now is just strength stolen from anger, but It'll do in a pinch). I wait for God to show up and reveal his plan for getting us out of this mess. And by this mess I mean, get us out of the hospital and home with no cathing and no shunt. Its a lot to ask, but He's a big God.
As a bright spot, they have put in a call about getting us a room where we can room-in with her and take over her care full time! That is very exciting. Hubby is leaving work early to help me pack in preparation for this wonderful possibility.
I have a lot to be thankful for. But that thankfulness doesn't make me any more willing to accept something just because the devil is waiving around a pair of dentures, yelling that he knows how to use them. Put 'em back in the cup by your bed, you (insert those creative expletives here), and go back home before God gets here. Yeah. I can use the phone too. I called. He's on his way.
I'm still praying for Evangeline! I just wanted to give you my perspective on the whole shunt situation. Ciarlo got his shunt 1yr and 2 days ago. He was born on August 31st and he was looking good as far as not needing a shunt for the first 9 days. The day we were getting released his head circumference went up drastically and so I assumed they would be keeping us and putting in a shunt, but they sent us home to monitor the situation. We went to see the neuro dr 3days later and he had Ciarlo readmitted to get the shunt the next day. It wasn't an emergency but it was preemptive. I felt better that they were able to wait until the next day. I've tried to look at it as God's little safety valve for Ciarlo. I know that the whole thing just SUCKS but these children are such a gift despite their little extras. Ciarlo was originally cathed every 3 hrs then they switched it to every 6 hrs. Then at 6 weeks they told me we didn't have cath anymore! Next week we have big appointments with CHOP because we were part of the mom's trial. I am praying that the non cathing continues!!! Don't lose hope! You never know what the future holds. Just cherish every precious moment you have with her!
ReplyDeleteThis is why the NICU sucks so much. It's a roller coaster. You just need to do what you have to do to survive it and get everyone out of there, and life will get better.
ReplyDeleteI know it's so so hard in the beginning. I had a hard time with the shunt too, but found a lot of peace in knowing that simple little piece of plastic and tubing would save her life and keep her on this earth with me. Had our girls been born in the 50's or earlier, they wouldn't be here with us today, because without shunts, kiddos died. Now we get to enjoy a wonderful long and amazing life with them, all because of that little tube. So, while I know it's hard, and trust me, it is hard, it will only make her stronger :).
ReplyDeleteThanks for the encouragement gang! It is appreciated.
ReplyDeleteI so love ur alliterations...I always try 2 make my mom laugh when the devil is attacking us by acting like I am physically fighting him, is it childish, absotootly, but ya know it makes me feel better than most swear words & that is saying something because I used 2 have the mouth of a sailor before I had 2 quit working!!! Trust me, he hides from strong women like us because he truly cannot handle how strong and fantabulous (yes, I make up a lot of words:D) we true christians are..it just chaps his hide that he can't take us down but for a split second when we remember that we have God on our side & no matter what the devil wants, God will always prevail if u believe & that is his will...if not, well, saddle up & get ready 2 ride because God obviously thinks that u r strong enough to get thru this so buck up!!!
ReplyDeleteSo u go super mom!!!
Deby