Thursday, August 18, 2011


Well, Elle had an MRI on Friday morning. Since we have been getting negative test results with the genetic testing, Dr. Carey thought it was time to rule anything out that might be found on an MRI. Which mostly would be structure problems, brain damage, or even a tumor or something. I knew months ago that getting an MRI was a possibility and I have been dreading it. It did indeed prove to be hard and scarey, but like everything else, we all got through it together and are grateful it's done.

Luckily, Matt and B happened to be down here staying with us (they went to a Bright Eyes concert the night before), so they were able to be home with Scout during the procedure. We had to be there at 6:30 in the morning! That meant we had to get up at 5:15 to make it up there. We did it early because she had to be sedated fully and therefore needed to fast, so they schedule the littlest ones early. This turned out not to be an issue. I fed her later then usual the night before and was able to give her a bottle up until midnight, so I gave her one around 10 and she never needed one after that (which is usual), so that all worked out great.

She slept the whole way there and woke up at the hospital. We had to register and check in and the place was totally empty except one nurse, one receptionist and a night watchman. The nurse did Elle's vitals and all of that stuff then we had to wait for another nurse to get there to start an IV. Elles was pretty cute. Then a little after 7 they put the IV in her hand (she hated that!) She doesn't like her hands restricted or held most the time cause those little hands have their own agenda which usually involves being up in the air and fingers clenching into fists. So taking her hand and putting it behind daddy's back was not too cool with her. Then they had the nerve to stick it with a needle and then wrap it up in bumble bee bandages. The nurse choose bumblebees cause she was wearing a smock with little smiling bees on it and Elinor loved it and kept leaning in to get closer looks. That was sweet of her. They gave her regular fluids for a while and she got pretty cranky. We had to do that and wait another half hour or so. I took her for that and rocked her and sang a few songs that did nothing to make her any happier of her treatment thus far. So I pulled out the big guns and sang C is for Cookie, complete with my terrible Cookie Monster impression, even though the door was open and I had an audience out there of 2 or 3. Anything for my sweet girl, especially cause that one works every time and I got a few smiles for my efforts.

Then we moved into the MRI room and they injected her hand with the sedative. She fought it. She was moving around, closed her eyes, cried a little. Got quiet, cried a little, moved around, etc. It took a few minutes for it to knock her out enough. Then came the hard part. I had to give my sleeping little girl to the nurse and watch her get carried to that big scarey machine, get hooked up to oxygen, heart monitors, and strapped to the table. I thought it was sweet that they kept Kiki with her and covered her with it. Then we had to leave. I couldn't bring myself to take a picture of her on the MRI table from the doorway (we weren't allowed in the room). Even though I can't imagine that I will ever be able to forget that image, we all don't need a picture of it.

We were sent to the recovery room where we paced (or should I say "I", Rob sat down. I'm the pacer). I was glad I didn't have kiki with me, it would have been too sad to hold it while Elles was in there. We discussed how hard it must be for parents that have to go through their babies having things like heart surgeries and stuff, cause this was hard enough. My heart goes out to parents that have to go through that kind of thing, I can't imagine.

We were told it would take about a half hour. I started doing fussy little things like clean the outside of the diaper bag and straighten the sheet of the gurney she was going to occupy. That's what I do when I'm nervous: pace and fuss around. We were worried about the actual procedure and also what the results would be. Nerve-racking! It ended up taking almost an hour (I stopped myself from cleaning this little portion of a wall divider next to me that had some sort of little spill on it- although I couldn't stop thinking about cleaning it and wanted to soo bad). I thought that was crossing the line into "crazy", but I think about that spot today and wonder if anyone has cleaned it. What a relief it was to see the nurse bring our little girl into the room, holding a wiggly little Elles. I asked if she was awake already and the nurse laughed and said, "well, her eyes are still closed". She gave her to me and she didn't open her eyes, but calmed down and fell back asleep. After a while I laid her on the bed cause she has always slept better lying down, spread out, rather then in arms. I wanted her to rest as much as possible. The nurse wanted to let her sleep for about 45 minutes then we were going to wake her up and let her drink a bottle and if all was good, go home.

45 minutes later, we all did our best to wake her up. Not easy. She finally opened her eyes and tried to focus, but didn't have much luck. After a while (and a visit from the sedative specialist to check sleeping beauty out), we were cleared to go. She wouldn't have anything to do with the milk or the apple juice, and promptly fell asleep when put in her car seat. We were given discharge instructions and a paper listing things to watch for today, told she would probably be cranky today, but a nap would help that. She slept all the way home (with mommy watching her belly for breathing as instructed). She slept on the couch when we got home to Scout, Matt and B. Rob's fishing buddy called and it was his birthday and wanted Rob to fish with him. We thought that would be ok, even though the spot was a couple hours away. Elles was doing ok and Matt and B were around. Elinor finally woke up and was having trouble holding her head up and focusing, and she was making these shortened little yells and various weird sounds, but she drank a couple ounces of juice. Then it was back to sleep. Good, cause she was a little cranky. She woke up a little later and seemed to be up for good. I fed her some food and then put her in her Jumparoo thinking she had wiggles to get out. She snacked in there and mommy tried to rest a little. Rest is hard when Scout comes in as Bowser every minute or two and Elles is in the living room jumping and making her weird yips and noises that sound like general little protests of some sort. I finally took her out and she drank a bottle and I thought she looked a little tired still, so I put her in her crib. She slept for another hour or so, mommy gave up on napping and Bowser played.

Then we had Bobble head Elles again. Then she choked on some apple juice and puked on mommy, then hung out for a little while. Around this time, a little neighbor came over and asked if Scout could come over to play. YES SHE MAY! Then I decided Elles should go in her crib for a little bit to play. She pulled all the characters off her mobile, pulled off the round things the character's hang from, drank two bottles and finally nested in and fell asleep again. B and I used this time to watch the first episode of Sherlock. Shortly afterwards, B was hooked.

It was getting to be dinner time, daddy was expected any minute and grandpa thought we should order pizza. So Matt got pizza, I got Scout, we ate, no Rob, Elles slept. Matt and B had to drive to Ogden to pick up his cameras (long story), and I decided to lay down for a while. I started thinking about Elles and missing her, so I brought her in with me on the bed. She was totally knocked out. We cuddled and I watched a few shows and she didn't stir. I started thinking about how she had been awake for about and hour and a half total that day and decided to nudge her awake. She would not stir. Didn't even stretch (this is odd, she always stretches immediately when she is disturbed while sleeping). So I worked a little harder at it and got minimal response. So I thought I would check out her discharge sheet and go over it- just to be cautious. It said that child may be drowsy that day, but easy to wake up. Another part said that if you can't wake your child up, to call 911. I decided perhaps I should double up my efforts on the Wake Up Patrol. I walked her around but couldn't get her to open her eyes. Dale (my father in law) came upstairs at this point and I told him what was going on. We took her outside and after a few minutes got her to crack her eyes open. She wouldn't focus and kept wanting to just close them again. She at least had her eyes open (which was good, cause I was a few minutes away from calling the ambulance). Dale suggested that I give her a bath. Good idea, so I did and at first she just relaxed and tried to sleep in the water (she was in her safety seat), I poured a cup of cold water over her head and she barely protested, but seemed a little more alert and started playing with the toy in front of her. Scout asked if she could try, so I let her pour a little cold water over her head. This time, we got a welcome (for me anyway) gasp of shock and I hurried and poured warm water over it and we seemed to have our little little back for the most part (+ bobble head though). We had come to accept bobble head Elles as part of the family at that point, so no big deal there.

She finished her bath, got some new dunglees on, and Scout went to bed. Still no daddy. I did notice a missed call from him however, having come in around 4:30. He said that the guy had driven further then expected and that his phone was about to die. Lovely. Elles stayed up for a while, but started rubbing her eyes again. I was exhausted, so I put her in her crib. She had another bottle and just kind of hung out. It was after ten and Matt and B came home. We all went in to see Elles and I told them about my evening and we discussed Elle's beautiful spirit that makes her so inviting to be around. You can't help but feel good being around her. She truly has a special little aura around her. I then expressed my tiredness and how even all that went on tonight, I sure hope she sleeps all night. With all the sleeping during the day, my secret fear was that she was going to wake up at 2 with a major case of Elly Beans and be up the rest of the night. Matt and B had a wedding the next day and turned in.

I started getting a little miffed that Rob was still gone. My miffiness turned into worry around 11 and I didn't like that cause I didn't want to be worried about someone I was mad at. He came in sometime after 11 looking about as mad at the situation as I was. I was determined to get my point across and he heard about the day and felt bad. But he already felt bad cause he was not planning on being gone that long. I know he didn't, and heard his story about how the guy drove like 3 hours longer then Rob thought he would and he felt really helpless, it being his birthday and all and Rob was a hostage in his car. Lesson learned. No fishing on such days unless it is one of the local spots and you have control over how far and long you go and your cell phone is charged up nicely.

Elles fell asleep about 11:45 and I planned on checking on her about every two hours and laid down in my bed. Next thing I knew, I opened my eyes and it was light outside. I flew into Tiny E's room and there she was, sleeping peacefully. I touched her hand and it twitched and she stretched and went on sleeping. I smiled and took that as a sign that all was ok. I can't believe we both zonked out all night! That was the last thing I expected. She woke up later in the morning with the twinkle back in her eyes and we were sans bobble head. I missed that sparkle that was missing the day before. The little yips were gone too. My Ellesies was back and WELL rested. It was great. Missed that girl. Sleepy, yippy Elle had her charm too though, but I was ok with leaving that day behind.

The weekend had her coughing a lot and puking a little. Not sure if that was all related, but it's gone now. I got a call with her results Monday morning, and they came back as normal. Brain scan and a chemical analysis of her brain both normal. That means "more genetic testing is recommended". Relived about that. I was once again relieved that we are not looking at brain damage, as said before, it feels better to know that she is suffering from something that is in her genes and she was meant to have this since she was a little egg. It is easier for me to deal with mentally this way.

Wow that was lengthy. Sorry. I kind of wanted to record the day though.


Cat said...

Poor things, all of you. What an ordeal. Looks like Bowser took it in stride though.

Cat said...

That's weird that Elle's big appt. with Dr. Carey was the day after Arcade Fire and her MRI was the day after Bright Eyes and Matt & B were there for both.

Amy said...

I'm glad she's back. It's so hard to watch your children go through procedures. I'm with you on sympathy for parents going through major health problems with their kids. It would kill me. I came really close to passing out when I was in the recovery room after Annie's tonsilectomy. Watching her wake up freaked me out a little.

Emily said...

That's funny that her waking up affected you so heavily. And yeah Cat- we remarked about that very coincidence of appointments and concerts. Weird. Handy though-- and yes, Bowser was wholly unaffected by the ordeal. She was briefly concerned for her baby sister when we got home and she saw the owie on her hand where she got her shot. (Scout spends a portion of every day thinking about shots.)
She totally cracked me up with what she spent a large chunk of the day as today- she was keyboard cat.

Emily said...

It just occurred to me that Rob was already home when Matt and B got home. This can only mean that they got home later then 11. Small matter to be sure, but bugged me a little once I figured out my mistake. (But I am too lazy to fix the post.)

Haley said...

Haha things like that bug me too. Man, I bet you are glad that is over with. I didn't know MRI's affect you so much. Poor little Elles.

Beth said...

Oh Em! I'm so glad that day is over for you. Sounds like you handled yourself so well! I would have curled up in the fetal position in the corner and cried. Good luck with that little Elles. She's a sweetheart.


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