Wednesday, May 13, 2009

Home Again and LUVIN' it!!!!

So here I am sitting on MY couch in MY family room, drinking MY glass of wine! Yea, we are home and I am in MY home with MY whole family!!!:) Okay did I get the point across??? Well, here we go again, Everlee was back to her old tricks- I think she is trying to get her frequent flyer card filled. Luckily my sister gave you all an update already but I here I am to give you bit more info.
It was day 17 since she had been out of the hospital for her second "vacation"and I started to see a bit of fussiness unlike your typical "baby stuff". So we called Dr. Loudon, her neurosurgeon, and they had us come that thursday. I knew where we were headed so I stopped feeding her at 7am in case she would need to go into surgey that day. Sure enough we saw Dr. Loudon, he tapped her shunt to have her CSF tested. No matter what the test results were he knew the shunt was not "tapping" properly so we would be going back into surgery for surgery #7. We dropped Aubree off with off with my mom (while rescheduling her birthday party) and headed back to CHOC. As most of these hospital experiences are, everything went SO fast. When we got back to CHOC we were admitted and went directly to SHORT STAY (basically this is where you go when you are headed to surgery). We were waiting for surgery but got pushed back because of an emergency, that both Dr. Loudon and his partner Dr. Mahonen would have to part of. Things got a little stressful because Everlee hadn't eaten in HOURS, how do you tell your baby that they can't eat? But then I saw the family of our docs emergency praying in the waiting room and realized we could handle our"stress". Then Myrlee, Dr. Loudon's PA, gave us some news we weren't expecting. Everlee's white blood count was in the thousands, so they feared infection. At that point we found out that she would not be getting her shunt back, but instead she would get her new friend, the EVD (External Ventricular Drain). Oh wasn't that a blast!!! Scott liked to describe it as the beer bong that was attached to our daughters head. Yea, how WT do we sound????:) Anyway, this drain had to remain level at all times to keep the proper level of CSF in her brain. We spent a week with this contraption and antibiotics to kill off her infection.
Day 7 in the hospital she was able to go back in for her new shunt, I never thought I would miss her shunt....but boy did I! Surgery went okay, there was some issue about her ventricules being too small because an employee of the hosptial didn't close off her EVD during transport, you can imagine I was not the nicest of mommies when this was discovered, but Dr. Loudon did what he does best and gave Everlee her new little accessory!:)
I didn't know what it was right away but recovery wasn't easy for her this time around, that was hard to watch. Unfortunetly, it didn't get better right away. She had to be on morphine for the severe pain she was in. Then her fever started and they feared her infection had returned so they started her on two antibiotics. Then we had the morning I thought I might loose my baby girl. Everything seemed to just be "typical" of what to expect from everything I have learned. But when I looked at my pale baby girl with no reaction to my voice and her eyes that kept rolling back in head, I thought for a moment that we weren't going to get her back. I fear everyday since that I will see her like that again. Luckily this state didn't last long, they discovered her hemoglobin count was way too low and she was given a blood transfusion. I swear to you, I watched my littled girl come back to life, it was amazing. So to all of you that don't, DONTATE BLOOD!!! Of course, we are now referred to a hemotologist because there was no reason for the actual blood loss and then referred to a GI Specialist because of some trace blood found in her stool. But who cares, we have a few more docs to see but my baby girl is now home and happy!
I do have to say this "trip" was a learning experience. During this time I had the pleasure of meeting a family that was Dr. Loudons earlier "emergency". This little boy was twelve years old and fighting complications due to his leukemia treatment. That is right, he wasn't even fighting his actually ailment yet, he first had to survive the multiple blood clots found his brain due to his treatment before her could even think about fighting his leukemia. This family has been in the hospital for the last 7 months. All 14 days we were there, that family was there just waiting for him to come out of his chemically induced coma. They were the most inspirational people I have ever met and everything that they had or have to go through put a lot of things in perspective for me. Each member of that family Mother, Father, 3 sons... told me that they truly believed it was their positive attitudes and their constant just"being there" that got their little guy through it all. I think of him daily I pray that he continues to fight.
I knew our daughter would be a fighter and that she would have some trials and speedbumps to overcome....... but we are so blessed and lucky to have what we have. Like I have said so many time before, Everlee Ann is a ROCKSTAR!!! Of course so is her sister, Aubree has been so good about putting off her bday party- that is such a big deal for a three year old. Of course we will make it up to her but just having her sister home makes up for all of us!!!!!
Love you all and thanks again for the support!!!!


beth said...

sooo happy to be home I bet. we need to talk. I can all too well relate to having a child in the hospital. Your little everlee is strong!!! sweetpea! keep fighting the fight!

Summers Family said...

So glad to read that Everlee is home with you and doing so much better. I am so sorry that you have gone through so much since her birth. My name is Nicole Summers ( and I came across your story and blog address on the Spina Bifida Group website. I live in Long Beach, CA and am 6 months pregnant with a little girl who has SB and Hydrocephalus. Thank you for letting me look into your life through your blog to see a bit of what we will/may be facing come August. We will continue to pray for Everlee's health and strength for the two of you as parents.

Mom to Jack (4), Benjamin (2) and Baby Girl due in August

Erika said...

Hello, this is Erika (SunnySanDiego) from the Spina Bifida website group. I am so happy to hear Everlee is back at home. Your post moved me a lot, thanks for sharing your blog with us (I found it at the SB group). I did send a proposal (with dates and place) to meet the SoCal families but it got pushed to the back, we would love to meet you!! We will keep Everlee in our thoughts and prayers so she stay away from hospital for a long time.

The Bullards! said...

You are such a rockstar little lady, and your mommy and daddy are rockstars too! =) Im so very glad that you are now home with your little bundle and that the family is re-united again. Hang in there, keep me updated and we love you!