Monday, December 23, 2013

Flu? Shunt? Cold? Teething?

I was so excited for last Wednesday! Evie had been having a few "off" days but nothing was too too alarming until Wednesday morning.  She had been sleeping a little more at school and not eating her bottles very well. It was worse Tuesday than Monday and Wednesday was far worse than Tuesday.

The morning started with our meeting with First Steps.  Susan (PT) got to our house a little early to work with Evie and see her progress then we met with her and Kathi (the coordinator/director lady) to talk about whether Evie had met the goals we set for her 6 months ago and what goals we wanted to set for the next 6 months and what equipment would be needed for her to meet those goals.  Evie had met all but 1 of her goals but we are in the progress of meeting that one...sitting unassisted for at least 10 minutes with both hands playing with toys. She can do this for about 5 minutes so now we are just working on endurance. 

We talked about getting AFOs ordered for her. We went ahead and put in an order for a stander to get her to bare all of her weight for longer periods of time. She bares weight for a couple minutes now but then needs a break so the stander should help with that. We also went ahead and put in the paperwork to get a walker when she is ready.  As soon as she can stand (even with her AFOs) for long(er) periods of time we will order the walker. If that is next month or in 5 months, whenever she can do that we will move forward.

During the meeting Evie wasn't very interested in Susan which is very abnormal for her. Evie loves Susan and usually interacts, smiles and laughs at just about everything Susan does....BFFs already :) Susan laid her down on the floor on her tummy to see if Evie would be interested in toys and instead she passed out, right there in the middle of the floor. If you know my child, you know that is not her norm. She is a busy body and likes to move and play and interact.  She slept for almost the entire meeting (about an hour). Before Susan left we were talking about how weird it was and that she had been getting more and more not like herself the past 2 days. Took Evie's temperature and it was only 98.4 (she usually runs 97.9). Susan agreed that when we got to clinic to make sure we saw neurology to rule out any shunt issues since she had gradually been getting worse and there was no fever we weren't really sure what was going on. 

We got to Cardinal Glennon and went right in for our renal ultrasound. We had a bit of time so we went and visited our friends at Fetal Care Institute (where I received my care during my pregnancy) and one of the finest NICU nurses you will ever meet, Holly, and then headed down to our clinic appointments.  All the nurses were excited to see Evie and see which bow she had on...she has a reputation in that place for cute bows so I try not to disappoint ;) Got to our room and I told the nurses she just wasn't acting right and we would like to add Dr. Elbabaa to our schedule. At that time the PT and orthotics lady had come in as well as our Urology nurse. They were all stunned at how unresponsive Evie was so we took her temperature...102! Just a few hours prior it was fine. We stripped her down and Dr. Elbabaa recommended we get to the ER ASAP after finishing up our other specialties really quick. With everything else going on the past few days and now the high fever he wanted to be sure to get a full assessment to see what was going on.

This is how she was acting at Clinic and in the ER!

Was it the flu? Shunt malfunction? Shunt infection? A common cold? Teething? These are all things that run through our heads. It could be anything a "normal" baby goes through or it could be something much larger having to do with her brain that would require immediate brain surgery.

We got done, headed over to the ER and got a room. They were incredibly busy. Dr. Elbabaa left clinic to come over and check to see how Evie was doing. I can honestly say I will never forget that encounter with him. He walked in, smiled at me and looked at the 2 nurse practitioners that were in our room. He said "I don't mean to intrude on your territory but this is my girl and I love her and I want to make sure she is going to be ok." Our doctors are seriously incredible! He explained to the nurses that he needed them to do a full work up to find the source of the fever (means infection somewhere) and that if all of those came back negative they needed to call him and move forward with a CT scan of her brain. He left us in incredibly able hands.

First up was a few nose swabs and a chest x-ray. Then they needed to get blood and urine for cultures. I explained to the nurse that Evie has incredibly picky veins that usually require the talents of the transport team (the team that goes out and brings the babies to CG after they are born - highly experienced). After the nurse looked at all of Evie's veins she agreed that the transport team would be needed. We got Gerald in from transport and he was able to get a vein in her wrist on the first try. Got her blood drawn and the IV started. They put her on fluids because she was dehydrated and began administering antibiotics in case this was a bacterial infection.

Gerald getting Evie's IV started

While all of this seems like it went by fast I think we were at about 8pm by this point. We had been in the ER since 2pm and at Cardinal Glennon since 10am! 

The nurse and doctors came back in and said Evie's chest x-ray showed pneumonia. After discussing her symptoms and high fever it was decided to go ahead and admit her and watch her over night. We got up to our room very late and I went home to sleep and be with Gavin (my parents had him) and Joe would stay with Evie at the hospital. She looked to be miserable and in pain but we managed to get a few giggles out of her and she was babbling as I was leaving. 

The next morning I got Gavin to school and headed up to the hospital. Evie was doing much better and more like herself in spurts.  She got a huge stocking full of toys and goodies delivered to her room and got another bag of fluids. The doctors decided she could be discharged and we were out of there shortly after noon.  The doctors said she should not spike a fever again and should act normal in spurts throughout the day and be tired/drowsy other times and she is finishing getting over her illness but that if she got any worse she needed to be seen again. We finished out our Thursday at home and got ready for work and school the next day.

The stocking was bigger than her!

Friday morning I got up and got the kids ready like normal. I noticed Evie had a rash on her back and tummy and some on her face. It was raised but not too red although it wasn't normal skin tone either. I took them to school like normal but before I could leave I noticed Evie wasn't acting herself again. She wasn't happy and smiling like she was just the night before. I decided to change her diaper and saw that the rash had gotten much worse and was now all over her arms, legs, back, tummy, face, neck...everywhere. And it was bright red. It wasn't little dots like they explained from the viral infection it was like big welts all of her body. I called Joe and we decided we would take her in the ER as she was not acting like they said she should. 

This is what her tummy looked like she she woke up. You can see the rash is raised!

And then at daycare it turned bright red and it was raised. Huge welts from in her hair all the way to her toes!

We got her to the ER around 9am.  At that same time we saw a bunch of commotion going on in the entry way. We got back to our room and got the charge nurse of the ER who was incredibly friendly. She said that Andy Benes (A former St. Louis Cardinals pitcher) was visiting and had toys to give out. She got us checked in and checked Evie out and since she was stable we got to go meet Andy and get Evie a nice toy. It was fun and Andy even asked if he could hold Evie. They took lots of pictures of her...what can I say, she's a cutie :)
Evie and Andy Benes

We went back to the ER and at that time the nurse practitioner followed us back to our room. She said she reviewed Evie's chart from Wednesday and Thursday and said that because of the type of antibiotic that was given to her in the ER and the fact that her infection was viral and not baterial her body was reacting badly to the antibiotic when it wasn't needed. That with the type of infection resulted in these awful welts all over her body. The nurse said Evie was most likely completely unaware she even had a rash and since she had no fever she was ok to go to daycare. Joe and I took her back to school and they promised to give her lots of extra love which I am sure they did! I went back to work and Joe went home to get some sleep (night shift guys...not fun!) 

Evie has been acting pretty normal most of the time since then although she does still have this rash all over her body which seems to get bright red if she gets hot but overall she is doing much better. I hope this rash is gone quick because I wanted to get Santa pictures over the weekend but didn't want to have that pesky rash in the pictures! Hoping to get them done tonight if the kids are in decent moods. 

Thanks for all of the prayers! They sure are appreciated and our girl really needed them! 

We are now on the donation "clock" for an amazing clothing company out of Illinois that donates 50% of their profits to families that experience large unexpected medical bills.  Evie was lucky enough to be chosen for a donation period and right now is that time. The company is called Fight the Fight and they have a pretty cool logo! You can get anything from bracelets to purses to sweatshirts and t-shirts from their website. We would be so grateful if you wanted to get some cool gear and support our girl! Their website is or you can just click here

With all our love,

Monday, December 16, 2013

Evie is 7 months old!

I am a little late since Evie was 7 months on the 7th (does that make it a golden birthday??? lol!) We have been so busy with preparing for Christmas, moving that dang elf, Dash, which I forget to do all the time, wrapping presents and keeping up with family that I just forgot to post Evie's update for the past month.

She is doing so great! She weighs 22 pounds 5 ounces. She has lost a few ounces but that is ok since we know what is causing it. Evie is no longer spitting up like she was so we were able to stop the cereal in her bottles (pure carbs) so she is losing a tiny bit of weight. We are having trouble with her being able to eat now, though. She was so used to the thickened milk she no gags on it even with a level 2 nipple. We have to add 1/2 tsp of cereal to her bottles so the flow is slow enough for her not to gag. To most parents that doesn't sound like a big deal but that sends red flags all up for us....that dag gone Chiari II makes me nervous! A symptom of Chiari Malformation II is gagging. Evie should be able to keep up with the flow of a level 2 nipple. We have taken the cereal out almost a full month ago and we still can't get it completely out. We did start solids and she is able to take food from a spoon without gagging so our neuro team isn't worried. We will be doing fast paced MRI in March to check her ventricles and Chiari II. 

Evie is doing great with her motor skills! Our physical therapist is so wonderful at teaching us what to do with her and why we are doing it. Evie can now sit up, all the way, for long periods of time! She loves to sit and play with her brother and he loves to play with her on the floor and gets right up in her face and says "Hi Evie" or "boo boo Evie!" - they just adore each other...let's hope it stays that way. Ok, you're right, I'm not holding my breath ;) 

She is capable of rolling both front to back and back to front but mostly chooses to either sit up or lay on her side. She is so stubborn, I have NO clue where she gets that from. 

She can bare all of her weight now on both legs and push up. While it is only in spurts and not for too long we are over the moon that she figured out she could do that! We think alot of her weakness is in her hips and that is causing her the issues. When she was little she was checked for hip dysplasia because her hips were "loose" but an ultrasound and check by the orthopedic doctor proved she didn't have it. So her hips are loose but not loose enough to have hip dysplasia.

Evie now says "Da Da" and it's not just a sound. She deliberately says it and reaches for her daddy. 

She has been battling a constant UTI for a few weeks now. We have her on a really strong antibiotic to kick it in the rear and then she will stay on a small dose of antibiotic for a while every day.

Our every day routine consists of size 4 diapers, 9-12 month clothes, about 20 ounces of formula a day (she's not too big of a bottle eater but her weight and everything is still healthy), fruit in the morning and veggies at dinner. She is a pretty happy baby and is proving to have some diva qualities about her. She has to have someone in her line of sight all day long or she will throw a fit. If one of her teachers walks away she will cry and as soon as they go over to her she is so happy and smiley...such a stinker!

On Wednesday we meet with our First Steps coordinator and physical therapist to go over Evie's goals for the next 6 months. At that time AFOs will be ordered for her as well as a walker/gait trainer. (At some point we are hoping Evie will get strong enough to where she can go to SMO bracing!) We also have our end of the year tests with urology and other clinic appointments on Wednesday. Please keep her in your prayers that everything goes according to plan :)

These are AFOs - they provide more support which will help with Evie's hip weakness right now. AFO stands for Ankle-Foot-Orthotic

This is an SMO - it is barely even visible above a tennis shoe line. SMO stands for Supra Malleolar Orthosis - they provide less support to the foot compared to an AFO.