When It Rains It Pours

So you know the saying, when it rains it pours?  Well that's how I feel lately.  Last Wednesday, Zoe went in for her 9 month vaccinations + synagis shot (this is a shot of antibodies to help prevent RSV).  Most heart babies receive this shot.  You get this once a month from November - April.  Mike picked me up from work and on our way home Zoe started projectile vomiting, and continued to do so for the next few hours.  She started to look dehydrated so I emailed our cardiologist and contacted our pediatrician.  They both said to bring her in to the ER due to her past GI issues.  At that moment in time, I just looked at Zoe with tears in my eyes and just felt so sorry for her.  In her 9 months here on earth, she's spent nearly 4.5-5 months in the hospital so far due to the NICU, ER visits and heart surgery.  I know this is the life we're going to lead due to her condition, but I don't really think I've grasped that Ann and Robert H. Lurie Children's Hospital is going to be her home away from home. 

Mike took her to the ER as he had to work the next day.  She started throwing up green bile which is a red flag for GI babies, could mean a bowl obstruction.  X-ray, tests, blood work, proved all normal.  She moved to the cardiac floor because as she was just vomiting with no other symptoms they were worried about fluid around the heart.  Echo showed no fluid.  Poked, prodded, bolus rounds of fluid to keep her hydrated and countless screams from our baby.  Then came the diarrhea.  Now they knew this was a virus.  I called my mother in law on Thursday to see how Zander was doing.  She informed me he had a fever.  Great. 

I parked across the street at the firehouse to save money on parking.  Parking is around $25 for your stay.  Since Mike is on the job, we use this to our advantage.  However, it was not to my benefit Thursday night.  I was blocked in by 2 cars and the people who parked there (no one on shift), which they did not leave their keys in the firehouse.  I waited an hour, after the guys tried to help me out.  So I had to take a cab.  Although it made my day even gloomier as I had to leave my sick baby in the hospital by herself, and then head home to take care of another sick baby, I had a wonderful conversation with the cab driver.  I showed him pictures of Zoe, explained her condition and now I have another prayer warrior for Zoe.  All he kept saying "she's so beautiful, she doesn't look like she has anything wrong".  I then had to explain how her insides are a bit different.

I got home, my in laws left and I just sat on the couch listening to my Christmas music trying to relax.  I called Zoe's nurse to check in on her and headed to bed.  3:00 a.m. I got a tap and "mama", I brought Zander in and snuggled with him.  He was on fire.  I took his temperature and it was 101.  I then said "Do you want to watch the duck" (he's obsessed with Donald Duck).  "uh huh".  I needed to get him some Tylenol and fluids in him.  His fever seemed to break around 5, but I was on no sleep.  Mike got home at 8:30, I called a cab to come and get me.....never came.  So I rode the bus, hopped in a cab and went to the hospital.  (This is Friday).  I got in to her room and found out she was now in fevers and hasn't stopped having diarrhea.  She saw me, screamed to be held and I held her the rest of the day.  I got pooped on 6 times and vomited on once (without a change of clothes....note to self moms who are in hospitals alot...bring at least 2 change of clothes).

We were then informed that Zoe showed elevated Billy Rubin numbers in her urine (this is what causes jaundice).  It could be genetic, or it could be an extremely rare condition.  We were praying it was benign or nothing.  But of course I got "mom, no need to freak out yet, we'll just take some blood work and a possible liver x-ray".  How can you not freak out?  You need your liver to function properly to survive!  A few hours later it came back normal and was stated that due to extreme and severe dehydration, that's what caused the elevation.  Phew.

Mike was sending me text messages that he did not feel well.  I got a call from my mother in law saying that Mike hasn't stopped vomiting.  Great.  So I left Zoe at 6:30 pm to run to the pharmacy to get Mike some stuff, headed home and packed up Zander and headed to my mom's (who is about 45 minutes away).  I did not want Zander to get sicker or myself.  I felt horrible that my husband was alone, but I had 2 kids to care for, as well as myself.


Saturday, I trucked back to the city early to get to Zoe.  We were discharged at 7pm as she was not dehydrated anymore.  I had the choice to have her stay one more day or leave....I wanted out.  I didn't want her to get any more germs.  I can handle poopy diapers.  So I picked up all our bags, with the help of her nurse and headed to my car.  I went to grab the 2nd carseat at home and checked in on Mike.  Packed us up again and headed to my moms. 

Zander was better by Sunday.  Mike was somewhat better and Zoe had her smile and spunk back.  My inlaws came by to help me sanitize our house.  A good 3-4 hours worth of heavy cleaning.

I had a major pity party on Thursday and Friday.  I don't cry that often anymore, but every once and while I feel like I'm loosing it.  Zoe's immunity system is whats the issue right now, and will be for some time.  The doctors promised me it will get better in time, but right now we will be having lots of hospital stays because they have to rule out everything.  With being afunctioning polysplenic, everything escalates with Zoe.  A common cold seems to turn into something horrible.  We're not just at the hospital for 24 hours, we're there 3-5 days at a time. 

I've used up all my vacation at work.  I'm now on the FMLA with unpaid time and have to reimburse my firm medical insurance for the days missed.  We're a two income family, I give kudos to those who do this on one income.  I wish I could stay at home, but its not possible with Chicago living expenses.  Hospital stays, ER visits, doctor appointments, lengthy echos are days off of work.   Mike and I will never be able to go on a vacation for the new few years because I have to bank all my time for the possible hospital stays.   Have I mentioned that we need a date night? 

Mike is almost 100% better, Zoe is as well.  I on the other hand am starting to get run down.  I have a deep raspy voice (luckily no throat scratches) but I look terrible.  On top of no sleeping last week, its continuing this week because Zoe is getting 3 new teeth. 

So I thank you for your continued prayers.  I'm asking Santa for a healthy 2013, because we need it.