Rylee is my little rockstar! She has been WONDERFUL!
She is currently hooked up to a continuous video EEG monitor. Though she doesn't mind it now, when they had to put those 26 electrodes on her head individually, it was rough, to say the least. She was doing great with the first one until they took an air pump gun thingy (like my technical terms?) and had to dry the glue holding the electrode, to keep it in place. She lost it at that point, and when the nurse kept doing it over and over, she became more and more inconsolable. They let me lay in the bed with her while they did it, so we went back and forth between bottle and pacifier in attempts to soothe her. Both would work for a second and then she was screaming again. As soon as I picked her up, she was out in my arms, and I just held her while she slept.
She was on the monitor for about 2 hours before our room was ready, and then we moved upstairs to the actual Children's Hospital. I must say it's very nice. The room is about the same size as the room I was in for labor & delivery,with a bigger bathroom. The's a "couch" that you can take the back cushions off and it becomes a bed (like the postpartum room, but longer and not as wide), and the loudest chair that supposed to "lay" back into a bed. It lays back alright after making the loudest screeching sound and then if you don't keep pushing back, it sits back up with another screech. Paul was such a gentleman and took the chair last night.
Overall, Rylee has done great! We haven't been able to play like we normally do. We have to stay in sight of the camera that's recording the EEG so we're limited to the crib in the room, and the loud chair. As soon as the doctors are satisfied with the number of tremors recorded (I have to hit a button when I see or feel one) then they will take the electrodes off of her and she'll have her MRI. They've already collected the blood and urine samples, so then we'll be done.
Yesterday, she only had 2 really minor tremors compared to what she normally has. I'm thankful for that, but sadly that means she's connected to this machine for longer. My brother and I watched the computer screen for awhile and he was telling me when she was awake, and sleeping, that he noticed it kept randomly saying XL Spike, though the waves looked pretty much similar throughout. Of course, I consulted Dr. Google (I know better) and basically what I could find is that an XL Spike is abnormal brain activity- though a neurologist has to consult the whole EEG report to decide whether it's a cause for concern or not. She had 7 "spikes" in a 3 minute period, at that point Paul made me lay down and quit counting.
I know she's going to be fine, she has a huge family and support system that loves and adores her and we will all do anything for that little girl. I'm very lucky to have these people around me right now, as seeing my little girl (even though she's doing great) hooked up to all of this stuff and not being able to move her around and play with her like I want to has really taken it out of me.
Paul's at work today (the big wig is coming into his store to look at it, aka Chuck Ride- weird name, I know) so he NEEDS to be there, but I know it's killing him, because he WANTS to be here, and then he has school tonight. It's really getting to him that I'm here by myself, and honestly, I don't like it much either. I'm good at home all day by myself, but there's something about being in the hospital with limited mobility that makes me nervous and uncomfortable. I'm just ready to get my bug home so I can lay in bed and cuddle with her!
I'll try to update tonight or tomorrow with how today goes!
Tuesday, April 12, 2011
Friday, April 8, 2011
Day 102: Post Pregnancy Vents
So after reading a friend's blog the other day, I decided I needed a vent blog post about things that happen post pregnancy. I will say I was fortunate enough to lose my pregnancy weight, so that won't be a complaint. However, due to extreme nausea, I only technically gained 9 pounds, and I lost all of that plus another 15. I'm pretty sure I would have preferred gaining all of the weight :)
Night sweats. I wake up every morning and feel like I've just run a marathon- not that I've ever even come close to doing that, but I assume that's how I would feel! I am drenched head to toe in sweat. I thought, when we co-slept, it was the heat between mine and Rylee's bodies, but no. She's been in her bed for 8 weeks now, and I still wake up feeling like a sweat hog. AND... I only have time to take a shower at night due to my non-napping princess, so I sit around with dried, nasty sweat all day! Yuck!!
Hair loss. I've always lost- what I thought to be- a lot of hair. Paul has said several times that he never realized how much hair I had until he finds it all over the house. I have a lot, I lose a lot. I read when I was pregnant in all of the books that hair loss slows while pregnant, and then you lose it all post-pregnancy. OK, my hair loss never slowed when I was pregnant. I was still pulling out and finding hair all day every day. So I ASSUMED (I know, I know) that this whole hair loss thing wouldn't effect me. Oh. My. Goodness. Not only does my hair fall out and I find it on Rylee and in her hands all day long, I can pull CLUMPS out by just running my fingers through my hair. Um, WHAT?! I know I have a lot of hair, but I feel like I'm going to go bald! I'm having to clean my hairbrush out every other day, because there's so much hair in it, I used to do this like once a month!
So, um, yeah.... when do these things stop? Anyone? I'm sure I have other things that I could think of and talk/vent about (saggy boobs and skin, eh), but those are the main two that are effecting me every day.
Now I will say- other than the extreme morning/afternoon/evening sickness- I absolutely loved being pregnant, and honestly miss it every day. I loved feeling Rylee kick and move around, and as annoying as her hiccups were (and still are, she still gets them ALL THE TIME), I absolutely miss it. I also knew she was safe, happy, and healthy in there. And while I have the safe part covered, there are many days when she's not happy, and with already being on daily medications and having to do all of these tests, I'm starting to question the healthy part. Don't get me wrong, I love having her outside to cuddle and play with, there's just something about being able to be her absolute safe place and protector from all things that I miss.
I will also say that just because I miss being pregnant, I don't plan on doing it again anytime soon! This mom thing is a lot harder than I thought, and with a high needs baby it's downright exhausting ALL OF THE TIME. There are days when I swear she'll be an only child, but then there are days when I want to see her playing with a little brother or sister. It's definitely a several years from now discussion, not an anytime soon one.
Let's end with looking at pictures of my beautiful (nap-fighting all day, so I tortured her with bows and pictures) baby girl :)
Night sweats. I wake up every morning and feel like I've just run a marathon- not that I've ever even come close to doing that, but I assume that's how I would feel! I am drenched head to toe in sweat. I thought, when we co-slept, it was the heat between mine and Rylee's bodies, but no. She's been in her bed for 8 weeks now, and I still wake up feeling like a sweat hog. AND... I only have time to take a shower at night due to my non-napping princess, so I sit around with dried, nasty sweat all day! Yuck!!
Hair loss. I've always lost- what I thought to be- a lot of hair. Paul has said several times that he never realized how much hair I had until he finds it all over the house. I have a lot, I lose a lot. I read when I was pregnant in all of the books that hair loss slows while pregnant, and then you lose it all post-pregnancy. OK, my hair loss never slowed when I was pregnant. I was still pulling out and finding hair all day every day. So I ASSUMED (I know, I know) that this whole hair loss thing wouldn't effect me. Oh. My. Goodness. Not only does my hair fall out and I find it on Rylee and in her hands all day long, I can pull CLUMPS out by just running my fingers through my hair. Um, WHAT?! I know I have a lot of hair, but I feel like I'm going to go bald! I'm having to clean my hairbrush out every other day, because there's so much hair in it, I used to do this like once a month!
So, um, yeah.... when do these things stop? Anyone? I'm sure I have other things that I could think of and talk/vent about (saggy boobs and skin, eh), but those are the main two that are effecting me every day.
Now I will say- other than the extreme morning/afternoon/evening sickness- I absolutely loved being pregnant, and honestly miss it every day. I loved feeling Rylee kick and move around, and as annoying as her hiccups were (and still are, she still gets them ALL THE TIME), I absolutely miss it. I also knew she was safe, happy, and healthy in there. And while I have the safe part covered, there are many days when she's not happy, and with already being on daily medications and having to do all of these tests, I'm starting to question the healthy part. Don't get me wrong, I love having her outside to cuddle and play with, there's just something about being able to be her absolute safe place and protector from all things that I miss.
I will also say that just because I miss being pregnant, I don't plan on doing it again anytime soon! This mom thing is a lot harder than I thought, and with a high needs baby it's downright exhausting ALL OF THE TIME. There are days when I swear she'll be an only child, but then there are days when I want to see her playing with a little brother or sister. It's definitely a several years from now discussion, not an anytime soon one.
Let's end with looking at pictures of my beautiful (nap-fighting all day, so I tortured her with bows and pictures) baby girl :)
She thought she was going to enjoy our game
She did not
Baseball BabyLegs! I have football ones too :)
Tummy and naked time all in one
She's getting really good at turning herself
Thursday, April 7, 2011
Day 101: Hospital Stay
Rylee will be admitted to the Children's Hospital at St. Francis at 10am on Monday, and will be kept under observation for 2 days. Those are going to be a long two days, and I think that's just putting it mildly. I'll be excited once we have all of the results, I've started researching clonus and hypertonia, and I don't like what I'm finding, so I've stopped looking. "Dr. Google" can get pretty scary. I plan on spoiling and doing everything to keep her happy the next few days, because I have a feeling she's not going to handle strangers poking and prodding on her well.
In good news, the Cherry Street Farmer's Market opens up this weekend and Paul and I are going to go by there and get some fresh, local produce! So excited! I'm hoping we can stop by Williams-Sonoma as well, so I can look at some food processors so I can be prepared to make Rylee's food when she gets old enough. I can't believe I'm even thinking about solids, she's growing way too fast!
In good news, the Cherry Street Farmer's Market opens up this weekend and Paul and I are going to go by there and get some fresh, local produce! So excited! I'm hoping we can stop by Williams-Sonoma as well, so I can look at some food processors so I can be prepared to make Rylee's food when she gets old enough. I can't believe I'm even thinking about solids, she's growing way too fast!
Wednesday, April 6, 2011
Day 100: Holy Cow!
Rylee has been our lives for 100 beautiful days! How exciting is that?! Her fussiness is getting better every day, and her little personality is coming out!
We met with the neurologist yesterday morning, and got a lot of information. He believes the "tremors" are actually clonus, but we are going to do tests to make sure. He wants her hospitalized for 2 days to perform the myriad of tests and get them all done at once. She will have an EEG, MRI, blood analysis, urinalysis, and a chromosome check. He wants to make sure there's nothing going on in her brain (with the EEG and MRI- turns out CT scans can miss up to 40% of problems), make sure there aren't any chemical imbalances (with the blood and urine checks), and make sure there are no chromosome abnormalities.
I am pleased with the amount of preventative care that he wants to do to make sure my little girl is ok, and I'm happy he wants to get it all done at once instead of one step at a time and waiting for the results individually. I'm just having a hard time coping with the idea of hospitalizing my 3 month old. The first and only time I've ever been in the hospital is when I had her, and now she has to go back. I don't know when the stay will be, our insurance has to approve the tests, and then they will have to find a monitoring opening. I'm anxiously waiting for a call from the doctor at this point, because I really want to get it over with.
Other than that, everything has been going great! I have a beautiful baby I get to spend all day everyday with and wouldn't change it for the world.
We met with the neurologist yesterday morning, and got a lot of information. He believes the "tremors" are actually clonus, but we are going to do tests to make sure. He wants her hospitalized for 2 days to perform the myriad of tests and get them all done at once. She will have an EEG, MRI, blood analysis, urinalysis, and a chromosome check. He wants to make sure there's nothing going on in her brain (with the EEG and MRI- turns out CT scans can miss up to 40% of problems), make sure there aren't any chemical imbalances (with the blood and urine checks), and make sure there are no chromosome abnormalities.
I am pleased with the amount of preventative care that he wants to do to make sure my little girl is ok, and I'm happy he wants to get it all done at once instead of one step at a time and waiting for the results individually. I'm just having a hard time coping with the idea of hospitalizing my 3 month old. The first and only time I've ever been in the hospital is when I had her, and now she has to go back. I don't know when the stay will be, our insurance has to approve the tests, and then they will have to find a monitoring opening. I'm anxiously waiting for a call from the doctor at this point, because I really want to get it over with.
Other than that, everything has been going great! I have a beautiful baby I get to spend all day everyday with and wouldn't change it for the world.
Monday, April 4, 2011
Day 98: 14 weeks old
Just a quick update. Rylee is doing great! We've hardly had any fussiness since the 27th! It's been very enjoyable to be around Rylee lately. We took her to have her 3 month photos on Saturday at JCP and she HATED every minute of it. The lady started out making a weird noise that obviously scared her, and it was all over after that, but the lady kept making the noise thinking it would help the situation. Luckily, we got some good pics of her, I can't wait to post some of them once we get them on the 12th. For her 6 month pics, we are using a local photographer, Trisha Jimenez, with TG Photography. So many people I know have used her and their pictures are always absolutely gorgeous, so I'm excited to have her take Rylee's pics. I hope all goes well, because then I will most likely schedule Rylee's 9 month (if we decide to get these) and 1 year/cake smash pictures with her! Very exciting!
Rylee in the past 2 weeks has rolled from belly to back, and back to belly. She is now able to turn herself toward whatever she wants when on her tummy, and pushes herself toward it. She'll be moving and grooving in no time.
We go see the neurologist at 7am (holy, early morning batman!) and let him give her a full checkup and I assume schedule her EEG. The leg twitching is getting pretty bad when she sleeps, or maybe I'm noticing it because we are cuddling in the early mornings and napping together more often. Hopefully, we will figure out what is or isn't causing it.
I'll let everyone know what the doc says....
Rylee in the past 2 weeks has rolled from belly to back, and back to belly. She is now able to turn herself toward whatever she wants when on her tummy, and pushes herself toward it. She'll be moving and grooving in no time.
We go see the neurologist at 7am (holy, early morning batman!) and let him give her a full checkup and I assume schedule her EEG. The leg twitching is getting pretty bad when she sleeps, or maybe I'm noticing it because we are cuddling in the early mornings and napping together more often. Hopefully, we will figure out what is or isn't causing it.
I'll let everyone know what the doc says....
Thursday, March 31, 2011
Day 94: Update
Dr. McDowell just called and said that Rylee's CT was all clear and it looks great! YAY!! Now we just go meet the neurologist next week and see where we go from there! Thank God and all of you for your thoughts and prayers.
Day 94: First Hospital Visit
Rylee slept wonderfully last night! 8:00-5:30 (with a 5 minute wake up around 11:30, I just patted her back til she fell back asleep)! At 5:30, I fed her and brought her back to our bed and cuddled. Around 7:30, I got up to get everything ready for our trip to The Children's Hospital at St. Francis for Rylee's CT Scan. She was in a great mood this morning, luckily.
When we got there we checked in and they brought us to the waiting room, where Rylee started to get fussy because she was hungry. I was told when I made the appointment that there wasn't any reason that she couldn't eat that morning, so Paul fed her a few ounces. I didn't want her to have too much because I was told she would be sedated, and food + anesthesia don't go together. Next thing I know this little old lady (the volunteer receptionist in the waiting room) was freaking out. For some reason Rylee's paperwork supposedly said she was there for an Endo, not a CT, even though when we checked in, the admissions lady pulled her paperwork from the CT file. If she was scheduled for an endo and eating then the endo would be cancelled, when I told them she was here for a CT they were confused, a nurse got involved and many phone calls were made. Then, her paperwork said no IV, and I had to tell them that she in fact was supposed to get an IV. I was really nervous at this point, they didn't have her test right and they didn't know she needed an IV?! Finally, they took my word for it, and we were brought back to get her IV.
She was smiling and laughing while the nurse tech took her vitals and all of her information, then the evil happened. One nurse held her legs and arms done, while talking to her and making her smile (at first), while the other nurse looked for a good vein. Turns out Rylee inherited my veins, small and hard to find, yay (not)! They finally decided on a vein they hoped would work and before they even started Rylee started screaming, she was tired of being pinned down (once again, like her momma). The nurse doing the IV was great and got it on the first try, but Rylee was not going to stop screaming, the nurse holding her down was impressed, ha! Finally, the nurse picked her up and she silenced almost immediately. I eventually got ahold of her and she fell asleep for a quick nap while we waited.
Finally, the CT tech came and got Rylee, and that's when I found out that I got to stay with her! I was so happy to not just hand her off to some stranger. He got her strapped down to the machine, and she was oddly not fighting it. She was actually smiling in the beginning. He got a few images while she stared at the stickers on the top of the machine, but that hype soon wore off, and you could tell the tech was uncomfortable with her crying (once again, this bothered me a little, didn't he work with children all day?!), and he asked me to go get her a bottle or a pacifier. Once I got her bottle, I fed her while he added the contrast liquid to her IV and during the rest of the test and she was perfect.
She did so well! I'm one proud mama! All in all it was a good visit, though the lack of knowledge and communication between the hospital workers kind of worries me, considering that's the hospital our pediatrician would send her to if anything extreme ever happens. I'm hoping it was just a paperwork error and that they are not normally that unorganized.
I'm anxious to get the results (will call the pediatrician this afternoon to see who should be giving them to me). We meet with the neurologist on Tuesday at 7am and he will do an all out physical and schedule the EEG to see if it could be seizures. I'm ready to find out if something is causing the tremors or if it's just something she will have to grow out of (hopefully, this one).
She and Paul are napping now, and it's so cute seeing them cuddle together.
When we got there we checked in and they brought us to the waiting room, where Rylee started to get fussy because she was hungry. I was told when I made the appointment that there wasn't any reason that she couldn't eat that morning, so Paul fed her a few ounces. I didn't want her to have too much because I was told she would be sedated, and food + anesthesia don't go together. Next thing I know this little old lady (the volunteer receptionist in the waiting room) was freaking out. For some reason Rylee's paperwork supposedly said she was there for an Endo, not a CT, even though when we checked in, the admissions lady pulled her paperwork from the CT file. If she was scheduled for an endo and eating then the endo would be cancelled, when I told them she was here for a CT they were confused, a nurse got involved and many phone calls were made. Then, her paperwork said no IV, and I had to tell them that she in fact was supposed to get an IV. I was really nervous at this point, they didn't have her test right and they didn't know she needed an IV?! Finally, they took my word for it, and we were brought back to get her IV.
She was smiling and laughing while the nurse tech took her vitals and all of her information, then the evil happened. One nurse held her legs and arms done, while talking to her and making her smile (at first), while the other nurse looked for a good vein. Turns out Rylee inherited my veins, small and hard to find, yay (not)! They finally decided on a vein they hoped would work and before they even started Rylee started screaming, she was tired of being pinned down (once again, like her momma). The nurse doing the IV was great and got it on the first try, but Rylee was not going to stop screaming, the nurse holding her down was impressed, ha! Finally, the nurse picked her up and she silenced almost immediately. I eventually got ahold of her and she fell asleep for a quick nap while we waited.
Finally, the CT tech came and got Rylee, and that's when I found out that I got to stay with her! I was so happy to not just hand her off to some stranger. He got her strapped down to the machine, and she was oddly not fighting it. She was actually smiling in the beginning. He got a few images while she stared at the stickers on the top of the machine, but that hype soon wore off, and you could tell the tech was uncomfortable with her crying (once again, this bothered me a little, didn't he work with children all day?!), and he asked me to go get her a bottle or a pacifier. Once I got her bottle, I fed her while he added the contrast liquid to her IV and during the rest of the test and she was perfect.
She did so well! I'm one proud mama! All in all it was a good visit, though the lack of knowledge and communication between the hospital workers kind of worries me, considering that's the hospital our pediatrician would send her to if anything extreme ever happens. I'm hoping it was just a paperwork error and that they are not normally that unorganized.
I'm anxious to get the results (will call the pediatrician this afternoon to see who should be giving them to me). We meet with the neurologist on Tuesday at 7am and he will do an all out physical and schedule the EEG to see if it could be seizures. I'm ready to find out if something is causing the tremors or if it's just something she will have to grow out of (hopefully, this one).
She and Paul are napping now, and it's so cute seeing them cuddle together.
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