Saturday, March 31, 2012

Sweet girl

Reagan slept well again last night and woke this morning just as sweet as sweet can be. Mike went in to work today, so I spent the whole day with both kiddos and let me tell you, it's not easy even on a good day. Which scares me a little because our nurse forgot to renew her nursing license and we already know for sure she won't be able to work Mon/Tues but she may not be cleared by Thurs/Fri which will probably be bad days!! So please say some prayers that either Reagan skips her bad cycle this week (that would be awesome) or that everything gets cleared away and her nurse can work this week...or both! Reagan has been very laid back and relaxed today. I got so many smiles today from my girl, which led me to discovering that she has another loose tooth! Her top middle left incisor is super loose! I also got Mike to shine a flashlight in her mouth and I was able to see that her bottom middle left incisor (which she lost back in January) is finally coming through the gums!!! Mike was joking that it would be better if her permanent teeth just didn't come in...it's not like she needs them to eat and she does quite a bit of damage to her poor fingers with them (and us). Her pointer finger on her right hand has taken a while to heal where she bit it along the cuticle...turns out, she bit all the way through the nail. Now she's got a big gap where there isn't even a nail along the nail bed of that finger. Poor thing. For now, we're just enjoying her good days. I've kept her hair down so she can run her fingers through it all she wants. She's loving it. Such a sweet girl. Thank you for keeping her in your prayers!!

Friday, March 30, 2012

Sleep (for Reagan)

Reagan slept last night!!!! Thank you God! She actually slept from about 10:30pm to 10am this morning!!! She needed that! She woke up smiling and has been happy ever since. So glad to see smiles again. Today I took Ryan in to the pediatrician just to get checked out, he's 4 weeks old today and still a little jaundice. The doctor said he looks fine, probably just breast milk jaundice, but they ran some blood work just in case. Of course while we were there he was on his best behavior. The doctor examined him thoroughly and seemed pleased with everything. He is 11lbs now!!! He's an eater. He also likes to ride in the car. We've taken him in the car a few times now and every time he's been as good as gold. I sure wish Reagan would have liked riding in the car...that could have made our lives a lot easier! Ryan is also a grunter. He grunts about everything. He's constantly making noises. He's a crier too...although he's finally getting to where he can be awake for a little while and not cry...just a little while though. Baby steps. He also used to cry every single time I would lay him down to change his diaper, now he rarely cries when he's getting a diaper change. Last night he really was giving us a hard time! Reagan finally sleeps and he's up screaming his head off! He's a turkey! Hopefully we all get some sleep tonight!!

Thursday, March 29, 2012

Still sleepless and miserable

Reagan was up the entire night again last night. She'd sleep for short spurts here and there, but overall, she really didn't get any sleep. She was also very fussy at times, which is challenging when you're sleep deprived and up in the middle of the night. Poor Mike was up with her for a while and then still had to get up and go to work this morning. I don't know how he's doing it. It's not like I have time to rest during the day, but at least I'm not having to go to work and be productive (of course I'm not being very productive at home either). Reagan went between two extremes today...she was either crying hysterically or groggy and falling asleep. She took several naps today, but she was very twitchy so her naps ranged from 5min to about an hour max. When she slept for an hour we were starting to get our hopes up thinking she was out for good. But no, she woke back up. She's beyond exhausted. Her eyes are all red and have circles under them. We did see the startles today as well...I'm not a fan of that. I decided to not put another clonidine patch on her, since that's the only medication change we've made recently. I actually didn't give her any clonidine tonight. She seems to be plenty groggy on her own and she's in her bed for the first time in almost a week...so I'm praying she sleeps.

Wednesday, March 28, 2012

Not much progress...prayers needed

Reagan didn't sleep much last night. Thankfully for us we had a night nurse, but our poor girl is still exhausted and could definitely use some rest. I'm hoping she'll be able to get some sleep tonight...otherwise it's going to be a long night for everyone. This morning she seemed to be feeling a little better. The chorea had decreased significantly and she was very calm (her heart rate had decreased down to her normal resting rate of about 120). I went ahead and took off her arm restraint thinking it would be safe, but an hour or two later the movements picked back up and I heard her gnashing her teeth and figured it would be safer to just put it back on. Her hands and feet are still ice cold and she's been gagging and retching off and on all day, so we're not out of the woods yet, but we're obviously nearing the end. Tonight the chorea was in full force, so I sure hope she's able to get some sleep tonight, Lord knows she needs it! She was also doing something tonight that looked like a startle (with her arms) and has us feeling very uneasy...those of you that have been through this, know what I'm talking about. Hopefully it's nothing. Pray it's nothing. Please continue to keep her in your prayers.

Tuesday, March 27, 2012

Less fussy

Last night wasn't that bad of a night for Reagan. I don't think she slept well (in her chair in the living room), but I do think she slept, which is improvement nonetheless. There were a few times I heard her whine or whimper but each time we checked the monitor she was sleeping. She's been less fussy today than yesterday...I'm hoping that means she's almost done with this bad cycle. She's still having lots of chorea and looking beyond exhausted, poor girl. Her hands and feet are still ice cold and clammy (but her body is hot and her back sweats profusely). We have a night nurse tonight, so I'm hoping she is able to get some sleep (and hopefully Ryan lets me get some sleep)!


Here he is sleeping in our bed after keeping me up all night (not last night but the night before)...

Monday, March 26, 2012

Bad days & birthday pics

Reagan had a rough night last night. I'm not sure how we're going to manage her not sleeping, but Mike getting up with her on work nights just isn't going to work long term. Problem is, my hands were full with her brother, who decided he didn't want to sleep last night and was fussing nonstop. Ugh. These kids are going to be the death of us. Poor Reagan is still miserable. The chorea has picked up and she can't hold still for a second. She's moving and biting nonstop. She's got a scratch below her eye...we're not even sure how she got it. She's also somehow still able to bend the double reinforced arm restraint we just got! What are we going to do with her?!?! Fussy-wise, she's done less screaming and crying today than yesterday (and less yesterday than her usual first bad day) but her hands and feet are cold and clammy now (they weren't at all yesterday or the day before). Really the only sign we had that she was headed into bad days was her gnashing her teeth and the fact that she had already had 6 good days. Hopefully this will be a shorter and more mild bad streak. Our birthday girl deserves a break!! Now...here are some party pics from yesterday...




The same lady that made Reagan's 4th birthday cake also made this beautiful one!


Grandma cut all of these flowers out by hand!!





I got Reagan's cute purple outfit on Etsy!!


Reagan's speech therapist helping her open presents!





Ryan slept nearly the entire time and had everyone thinking he was an easy baby!

A not so happy birthday party...

Reagan did not sleep well last night and spent the majority of the night in her chair. When she woke this morning, she was not a happy camper. We saw this coming, but were hoping she'd pull through with one more good day...she did not. Daddy managed to keep her calm til about noon, when she finally started up with the crying (she even threw in some breath holding for good measure). It was only two hours til her party and way too late to cancel, so we just did our best to keep her calm and we grinned and beared it. She didn't cry nonstop...so for that I am very thankful. She wasn't able to enjoy her bouncy castle (or anything really), so that was unfortunate. She was still pretty miserable tonight (she was happier in her chair and preferred to not even be talked to), but for now she's asleep (in her chair of course). Please keep it in your prayers that she can get some rest and have a short, mild bad streak this time around! I'll post more details and pics from the party tomorrow...here's one pic to hold you over...

Saturday, March 24, 2012

Hold on

Another late post today...between preparing for Reagan's birthday party and having Ryan attached to me at all times (literally)...I haven't had a free second all day! Reagan didn't sleep in her bed very long last night, but the night nurse said she slept a good amount in her chair and in her arms. She hasn't been smilely at all today, but she's still been good. Even with all of Ryan's crying, she never let it get to her. I'm just praying she'll hold out and have a good day tomorrow for her party. She's due for a couple extra good days!! You know, a year ago on this day we were in the ICU after almost losing her! Very scary! We are blessed to still have our girl!!

Friday, March 23, 2012

OK...don't panic!! I completely forgot to do the blog!! Yes, things are a little hectic here. We're trying to prepare for Reagan's party on Sunday, so my mind has been elsewhere. Here is my quick post for Friday...

Reagan was restless last night...we heard her "talking" to herself several times, so we're not sure how much sleep she really got. She was a happy girl though, so that's good. She was super sweet all day. At times she was a little groggy, but it's hard to say if that was from starting the clonidine patch or just lack of sleep. We're still hoping and praying that her good days keep coming so she can enjoy her party Sunday. We're going to have a bouncy castle and a bubble machine...so we need a happy girl!!! Thank you for keeping her in your prayers!!!

Thursday, March 22, 2012

Start clonidine patch

Reagan slept well last night and woke up all smiles this morning. She's been a good girl today but she's also been very sensitive. There were several times today when she either gave us the frowny face or was moved to tears because we were talking (it started last night when Mike and I were talking and she gave us the biggest pouty lip you've ever seen). I've also noticed she's been a little clammy today as well. Not a good sign. Her party is Sunday so we're going to need some serious prayers that she holds out and somehow manages to have a good day on Sunday! I spoke with her doctor yesterday and we decided to try the clonidine patch with her (we applied it this afternoon). This will give her the equivalent of one 0.1mg pill throughout the day and then we can supplement with the pills to increase her dose as needed. The hope is that the clonidine alone will work the way it did before, back when she went an entire month with only good days. If not, then we'll have to investigate the use of opioids. Even though she's had a few outbursts today, overall she's been a sweetie. Very smiley and happy to do whatever. This morning she had vision and "school" and she was good for both. She was a little groggy during vision and she tried to fall asleep just before her teacher came, but she pulled through and did well for both. Hopefully she sleeps tonight and wakes happy again tomorrow! Come on good days...

Here are some pics I took yesterday...







Wednesday, March 21, 2012

Our sweet birthday girl

Reagan has had a good birthday day. That is, except for the doctors appt fiasco this morning, but that really affected me more than her. This morning we had a 9am appt with the special needs pediatrician/pallative care doctor (the one we didn't get to see last week). Long story short, we went through all the trouble of taking both Reagan and Ryan in to the medical center and our doctor wasn't even there!!! He was out of town at a conference!!! I was slightly irritated! Reagan has been sweet and smiley all day today. She's been a little groggy at times but other than a nap this morning, she's been awake most of the day. Tonight Daddy brought her home a mini birthday cake...boy did she make a mess with that! I'll post those pics tomorrow. For now I'll give you Birthday pics from years past...



First birthday...




Second birthday...



Third birthday...


Fourth birthday...

Tuesday, March 20, 2012

Birthday eve

Our girl slept the whole night through last night and then woke up this morning sweet and smiley. She was still very groggy and she took several naps today, but when she was awake, she was a happy girl. Today was definitely a good day. Tomorrow is Reagan's birthday. Five years ago our girl was born at 12:14pm on a Wednesday. I was still working and went in half a day on Tuesday and then went to my doctors appt. I was still only 1cm dilated, since my due date was Saturday the 24th, my doctor gave me a "rough exam" to try to move things along. My blood pressure was a bit high during my appt, so they made me go over to the hospital for monitoring. They put me in a room and hooked me up to the monitors, but my blood pressure was back to normal. Mike met me up there but they sent us home and we finally got to bed around midnight that night. At 3am I got up to go to the bathroom and as I was headed back to bed, my water broke! We called the doctor's office and then took our time and got to the hospital around 6am that morning. Since my water had already broken, they started me on pitocin around 6:30am. I was still only 1cm dilated and couldn't feel any contractions, but the pitocin worked quickly and before I knew it they contractions were coming so quickly I felt like I couldn't even catch my breath! It had only been a couple hours since starting the pitocin, so they were hesitant to even check me, but when they did I was already 4cm and they said I could go ahead and get my epidural. I'm not a fan of needles, but I don't even remember anything about the epidural, I guess because I was so ready to be done with the contractions! After that, it was smooth sailing. My mom, Mike, and my friend Kristen were all there...but not my doctor. Apparently Wed was her day off! Instead we had a horribly mean on call doctor that was in a hurry and even yelled at Mike! I don't remember any problems although my mom mentioned just recently that she was having decelerations in her heartrate before she came out. That would make sense because when she finally got out, she had the cord wrapped around her neck and was blue and not crying. She had fluid in her lungs and they were suctioning it out but they were obviously still having issues so they took her away and then brought her back later. All of that is still a bit fuzzy for me...I guess because they were still working on me. By the time they finished, Reagan was already back in the room. Her head was a little cone shaped, one of her feet was completely bent out of shape and her nose was crooked because of her position in the womb, and her eyes were bloodshot from coming out so quickly...but she was precious and we were in love. She even slept well for the first week or so...oh how that changed!!! At least she's sleeping tonight! Praying for another good day for our girl tomorrow (and that she holds out til her birthday party on Sunday)!!



Monday, March 19, 2012

Sleep at last

Reagan started off in her bed last night but she was restless. She did sleep a little...but she was wide awake at 2am when her brother was still refusing to stop nursing and just go to sleep...so I decided to just get up with both of them. Ryan's cries woke up Grandma so everybody but Daddy was up at this point. We got Reagan situated in her chair where she finally dozed back off around 4:30am. Ryan didn't fall asleep til an hour later and I was finally able to lay back down with him (talk about a long night). Reagan stayed asleep til 10:30am when we were talking about transferring her to her bed and she woke up. She was in a decent mood, I wouldn't say she was happy, more mellow than anything. Her speech therapist came and worked with her at 11, even though she had just woken up and wasn't super interactive. She was awake but drowsy and then finally fell back to sleep around 3pm and is still asleep now. I'm guessing she'll keep sleeping and finally sleep through the night tonight. The night nurse is not going to have much to do tonight...but she deserves an easy night...Reagan has been a real turkey the last few nights she's worked.

Sunday, March 18, 2012

Glimpses of our girl

Today has been a better day for Reagan. She didn't sleep much last night, but she at least she did get some sleep. She'd sleep for 30min or so in her chair and then wake up and kick around for a while. She did this off and on all night. She was still a little fussy this morning, yelling in her hoarse little voice, but she got over it and has been pretty good the rest of the day. Grandma came in this morning and we gave Reagan a bath and cleaned her up a little. She's been groggy, dozing off in her chair (but not staying asleep when we try to move her to her bed). The chorea is significantly reduced and I'm sure that has helped her to rest a little more. We were finally able to take her arm restraints off today...so that's progress in and of itself. She's made a couple gaggy faces here and there, but overall she hasn't really been as nauseous as I would expect at this point of her cycle. She's even given us some laughs today. We're finally starting to see glimpses of our girl again...hopefully she'll be out of this bad streak very soon!



You can tell how exhausted she is...poor girl!

Saturday, March 17, 2012

Horrible day

Today has been a hell of a day. Reagan didn't sleep a wink last night for the nurse. She was fine as long as the nurse left her alone in her chair, but the second she tried to change her diaper, she would freak out and start screaming bloody murder. She was OK for an hour or so this morning but then the yelling & screaming started up and continued all day long (which is great when you have a newborn trying to sleep). I'm sure part of it is exhaustion. Her eyes are red and you can tell she's exhausted, but she hasn't slept in days. She's still trying to bite nonstop. We've had arm restraints on her at all times, but we've tried alternating with her helmet (which makes her overheat too quickly) and some gloves (which she bites at and swipes at her face). There's really no good way to keep her from biting herself. Her poor right hand is so chewed up...I don't know if it's ever going to heal. And she can't sit still for even a second. Her arms and legs are flailing and going nonstop. The clonidine isn't helping, tylenol doesn't help, and neither does Lortab. She's just so resistant to medications...it seems like we'll never find something that works for her. It's very frustrating. She's not the only one that was crying today. It's so hard watching her go through this. Yelling and screaming nonstop and there's nothing we can do to help her. Please keep it in your prayers that she turns a corner soon...I don't know how much more of this any of us can take!

Friday, March 16, 2012

No sleep, lots of chorea

Reagan didn't sleep last night...and neither did Daddy. He stayed up all night (on a work night) with a very unhappy girl. No sleep, lots of chorea, super fussy and tense all day. So far we haven't seen any improvement with the increase in clonidine. She's been in one of those moods where she was best in her chair without anyone messing with her. The second I'd touch her or talk to her, she'd start fussing again. The problem is, she gets so sweaty sitting in the chair all the time, you have to pick her up every now and then (even though she doesn't like it). She's starting to show some signs of nausea. Making gaggy faces, sticking her tongue out a lot, maybe that means we're nearing the end of this bad streak. That would sure be nice. We didn't have a nurse today, but my Dad and my stepmother stayed an extra day to help, so that was definitely a blessing. Tonight we do have a night nurse, so at least we should get some sleep...assuming Ryan behaves! Please keep our miserable girl in your prayers. She sure needs some relief from these bad days!

Thursday, March 15, 2012

Mommy meltdown and 2 week doctors appt

Reagan did manage to get some sleep last night. The night nurse said she slept from 1-6am and then off and on after that...of course none of that was in her bed, but that's OK, sleep is sleep. She was fussy most of the day today but she did take a few short naps. Mommy had a slight mental breakdown today when Reagan's nurse left due to back pain. With Reagan being in the state that she's in, Ryan being super needy, & my hormones going crazy...I just lost it!! Thankfully my Dad and my stepmother were here to help me out (and they are staying to help tomorrow as well). Please say some prayers for Reagan's nurse, I'm 100% dependent on her now that Ryan is here and I really need her healthy and back to work next week!! We also need some prayers for our girl to start feeling better. These bad days are really taking a toll on her (and all of us). She's now on a higher dose of clonidine (0.05mg 3x day) and we're hoping that maybe that will give her some relief. Lots of prayers needed in that department! Also...prayers for sleep would be good. We don't have a night nurse tonight and Daddy is on Reagan duty, so hopefully she'll sleep some because he has to go to work in the morning! In other news, Ryan had his first doctors appt today...his 2 week visit. He weighed 9lbs 3.6oz and was 22inches long (that's 2 inches in 2 weeks...someone didn't measure correctly when he was born)! And the measurement we were the most concerned about, his head circumference, is 15inches which is in the 75% percentile. Thank you Lord. He is a little jaundiced but the doctor said that is normal in breastfed babies. All in all, he looks good. He was not happy about the heel stick for the newborn screening (he was quite the bleeder), but he eventually got over it. I've opted out on doing vaccines (for at least the first year...I'm just not willing to take that risk), so he didn't have to go through any of that. His next appt will be at two months.

Wednesday, March 14, 2012

Rough day

Reagan slept last night...thanks to double her normal dose of clonidine. She was out cold, so much so, I felt the need to check on her a couple times. At one point she was awake and moving around, but she went back to sleep and slept in a little not waking up til 9:30 or so. Unfortunately, she didn't wake up happy. She was very fussy and cried quite a bit (poor Wed nurse...she had a rough day last Wed too). I gave Reagan another dose of clonidine this morning and it helped her to doze off for a little while longer. She actually dozed off a few times throughout the day (thank God)...but when she was awake, she was pretty hysterical! It was definitely a bad day. I put an arm restraint on her left arm first thing this morning to keep her from biting herself, but then tonight she bit her right hand so now she's wearing both restraints! Ugh. And to top it all off, Ryan has been super high maintenance today. He kept us up a lot last night and then today he didn't sleep much and wanted to eat nonstop. Hopefully he has a better night tonight. And hopefully Reagan gets some sleep and is good for the night nurse tonight...she had a rough time the last time she was here as well!

Tuesday, March 13, 2012

Fighting off those bad days...

We don't think Reagan slept very well last night. I got up at 4:30am to change Ryan's diaper and Reagan was very much awake and kicking around. Mike trying laying in bed with her to see if she'd go back to sleep, but no. She did however lay there quietly til 8am. She's been a good girl again today. She did great during OT and spent some time out on the swing this afternoon. She's been very smiley, a little vocal, a few love bites (for her nurse and Daddy), and lots of movement. We've also noticed some temperature regulation issues. Her back has been quite sweaty but her hands and feet have been a little cool and clammy. Uh oh. We know what that means. Hopefully she'll hang on and have a decent day tomorrow. Tomorrow we have the new Wed nurse working (she's only worked one other day, last Wednesday, when Reagan was throwing up nonstop). We don't want to scare her away! I'm going to try increasing her clonidine tomorrow (and probably tonight). On a good note, we do have a night nurse tomorrow (and Friday night), so if Miss Reagan decides not to sleep at least we know she'll be well taken care of! Tonight the chorea has really kicked into full gear and she's a little crazy. Come on clonidine...this girl needs sleep!




Monday, March 12, 2012

Sweet girl, sleepy boy

Reagan didn't want to go to sleep last night but finally with the help of clonidine, she drifted off and slept the whole night through! She woke up smiling this morning and she's been smiling ever since. She had a 10:30am appt with the special needs pediatrician to discuss medication changes but we never made it past the waiting room (this doctor sees a lot of kids that require medical transport and apparently this was the morning they all showed up late for their early morning appts). We waited over an hour and a half until I finally decided we weren't going to wait any longer. I spoke to the doctor before we left and he thinks it might be worth a shot to try increasing her clonidine on bad days. So that's the plan. We've got an appt next week with him (on Reagan's birthday), so we'll talk more then. Normally we would have waited, but I had a baby to get back to...little did I know, he slept most of the time we were gone. And then he slept most of the day today. I probably should have slept while I had the chance! Ryan has been a sleepy boy and Reagan was a darling girl today. So smiley and so sweet. She did great for speech therapy and my dad and stepmother even took her on a walk. The dog loves it when they come to visit...he never gets to go outside that much! Of course tonight we noticed him limping...just what we need!







Sunday, March 11, 2012

Slightly on edge

Reagan slept well again last night and was a smiley girl this morning. She was super snuggly and the two of us cuddled for a while until Ryan woke up. Mike slept in a little, while I managed both kiddos and all was good. But shortly after Mike got up, I don't know if it was us talking or what, Reagan started to get sensitive and teary eyed!!! Totally unexpected. We also noticed her hands were cool and clammy. Uh oh. She was slightly on edge throughout the day...but she was a good girl overall. She just wanted to be held nonstop and we had to watch our tones around her. She was a cuddly girl all day and Mike and I both got our fair share of snuggle time. This afternoon my dad and stepmother came in to stay with us for the week. It was their first time to see Ryan. They are actually going to watch him tomorrow morning when we go to see Reagan's doctor to talk about possible medications to try to stop her bad days. This will be my first time to leave him and also his first time to try a bottle...we'll see how that goes. Hopefully he'll do a lot of sleeping for them! (otherwise there will probably be a lot of crying) Sorry...still no pictures....I'm a slacker!

Saturday, March 10, 2012

Good day

Today has been a good day for our precious girl. She slept well last night and woke this morning a happy, smiling girl! She's been much more alert today and only dozed off once for 15min or so. She's enjoyed just laying on the floor watching movies and playing with her hair. She's "held" her brother a few times and didn't seem annoyed at all when he started crying. He cries a lot (we call him cryin' Ryan), so hopefully we can get her used to it (or better yet, hopefully he'll mellow out and cry less)! Our biggest worry is that he'll wake her up during the night when she's sleeping. Sleep is such a precious commodity for her, we do our best to keep him quiet but he does NOT like diaper changes and cries until we pick him back up! Here's hoping for a good night's sleep for all of us tonight! I'll post some pics tomorrow!

Friday, March 9, 2012

One week later

Reagan slept the whole night last night and then woke feeling much better this morning. Definitely an answer to prayers. She did take a couple of naps today, but when she was awake, she was content and smiling. Poor girl. She goes through so much. Yesterday I did email her special needs pediatrician who just so happened to be attending a palliative care conference. I told him of the issues we've been dealing with and he consulted with another doctor who happens to be world renowned in palliative care. His recommendation was treating her for pain. He thinks that her dysautonomic episodes are being set off by recurrent pain she's having. We are going in on Monday to talk with him about our options in treating this and trying to prevent the horrible bad streaks she's been dealing with. Please keep this in your prayers...the last time we treated her with an opioid pain medication (methadone) her doctor overdosed her!
Today marks one week since Ryan's birth. I haven't had much free time since he's attached to me 24/7, but I promise I'll try to be better about pictures. Today was really the first time we even attempted to introduce Ryan and Reagan...no pictures though. She didn't seem to mind him...even with his crying. I think the key is to convince her to be amused by his crying (like a squeaky toy or something) instead of getting upset by it. We'll see if that works. He is a feisty one. We're already seeing his temper flare up when he doesn't get what he wants! I had wanted to go into detail in this post about his delivery, but he is demanding my undivided attention right now, so I'll have to do that another day (although I want to write about it before I forget all the details). So for now I'll give you a pic from a week ago. I think he looks much bigger in these pictures...he looks so small to me in person.



Thursday, March 8, 2012

Horrible night but sleep at last

First off, I want to thank everyone for their kind comments and most of all prayers! It's certainly been a rough past few days. Unfortunately last night was no better. Reagan was crying nonstop last night...her nurse felt so helpless she was crying as well (I certainly know that feeling). Her nausea wasn't as bad, just because her body can only do one or the other, and last night hysteria won. She was kicking and screaming and fighting...her nurse even took her into the kitchen to get her further away from our bedroom in hopes that she wouldn't wake us up. It didn't work, we could still hear her. She slept about 30min after her dose of clonidine, then I got up when I heard her screaming and gave her some Lortab and Mike laid beside her til she fell asleep and she slept 1hr, then she slept another hour later on...but she screamed every waking moment in between. This morning wasn't any better. You could tell she was beyond tired, but she just couldn't fall asleep. I gave her another dose of clonidine but it didn't seem to do much. Then right around 11am, I took her from her nurse and held her. She was fighting me nonstop, but I put her on my knee and bent her over at the waist and she seemed to calm down. The next thing I knew, she was OUT. I put her in her chair where she slept til 4pm. I was really hoping she'd continue sleeping, but at she seemed significantly improved when she woke up. She wasn't happy or smiling or anything like that, but she was much calmer and no longer nauseous. She had this groggy/out of it look in her eyes...but who can blame her, going on no sleep for days. We gave her a bath and then around 6:30pm she dozed back off. Mike put her in her bed (for the first time in days) and she was OUT. She's been sleeping soundly ever since...praise God. Hopefully she'll sleep through the night and even some of tomorrow to let her poor body rest from all of these bad days. Thank you so much for your prayers and please keep them coming...we need a nice long good streak this time around so our girl can recover from all she's been through!

Wednesday, March 7, 2012

No sleep, super nauseous

Reagan was up the entire night again last night. She has not slept since Sunday...and that was only a couple of hours. Seriously. No sleep. And to top it all off, she's been absolutely miserable with nausea all night last night and all day today. Nonstop gagging and retching. It's horrible. This mommy is not handling it very well. I was in tears most of this morning. I just hate to see her suffer like this. She's SO exhausted. You can see it in her eyes. She wants to sleep...she just can't. Nothing helps her nausea...nothing helps her to sleep. We have GOT to find a doctor to help with her dysautonmia because this is really affecting her quality of life. Not really affecting it, destroying it. Poor thing. Please say some prayers for her right now...she's just got to get better...

Tuesday, March 6, 2012

Quick post...more tomorrow

Today has been a rough day...emotionally. I'm exhausted both physically and emotionally. Ryan was up a lot last night (crying) and Reagan didn't sleep a wink. I'm busy trying to feed Ryan and keep him quiet all the while Reagan is super stressed, tense, and miserable and all I want to do is hold her. I haven't been able to give her much attention since I've been home and that really upsets me. All of the stress is really getting to me and I'm an emotional wreck. We need things to turn around for her. Soon. She's had ridiculous chorea today (can's be still for even a second) but you can tell that she's beyond exhausted...her body just won't let her rest. Tonight she's also been nauseous. Please pray for her. I'm going to go feed Ryan and try to get a little sleep...Daddy is in the living room with her and I can hear her screaming (I think she heard Ryan crying)...keep us all in your prayers!

Monday, March 5, 2012

Reagan and Ryan

Last night was a rough first night home for us all. Reagan was up nearly the entire night, only sleeping for small stretches of 15min or so here and there. When she wasn't asleep, she was angry and bitey and poor Daddy had to tend to her all night long on the sofa. I was in our bedroom with Ryan who also didn't want to sleep. He kept waking up and wanting to nurse, then he'd fall asleep nursing, but the second I tried to move him, he'd wake up again (wanting to nurse). It was a looooong night. I got up this morning feeling much more sore than I had in days...probably because getting up and down out of a real bed is much harder than from an inclined hospital bed. Reagan was a little less fussy today and just more stressed/tense. Grandma took her for a long walk outside and she actually did really well. Her speech therapist came and worked with her and she also did pretty well with that too. She's spent a lot of time in her chair, arm restraints on most of the time, still just not feeling quite right. I'm hoping she's gonna pull out of this soon. It sure would be nice to see our girl feeling better again. Tonight she's looking tired (and we have a night nurse), so I sure hope she's able to finally get some rest. Ryan has been good, sleeping a lot, but when he's awake, he wants to nurse...which leaves me with little time to do anything other than nurse!! He also has a bit of a temper (he may take after his sister in that respect) and when he doesn't get what he wants immediately, he has no problem belting out a piercing cry! But overall, he's still in the sleepy phase. He eats, sleeps, and wants to be held. He definitely prefers being held while he's asleep more than being put down. Not good. He does seem to like the pacifier though and that's something we really want to encourage! With Reagan we never even gave her one in the beginning (and she wouldn't take one later), but we were all worried about having to break bad habits later. But now we are wiser and we definitely know the value of soothing and if a pacifier does the trick, then we're on board!!! Time for me to try to get some rest...after I tend to Ryan again!


Sunday, March 4, 2012

We're home!

Reagan has had another heck of a day again. She slept most of the night though, in her chair, but sleep nonetheless (her poor nurse slept on the sofa beside her). She was fussy and whiny yet again. Still very much miserable. We got out of the hospital right around noon and headed home. I definitely think at first she was happy to see us (I was beyond happy). She had been fussing and as soon as Mike and I started talking to her, she calmed down. Of course, that was very short lived and she's been pretty fussy the rest of the day. Ryan has somehow managed to continue sleeping despite Reagan's fussing/yelling, so that's a good sign. Reagan is still very much miserable...having tons of chorea, nonstop biting (she got Mike a few times), and just all around stressed. What's funny, is that when we had some visitors today and were talking amongst ourselves...she seemed her most content (usually it's the exact opposite). Tonight she's very sleepy but fighting it. I'm hoping she can get some rest tonight and we can all try to recover from the last several days. Here's a couple Ryan pics to hold you over...I'll post more later when I have more time!

Right after delivery...




Yesterday...

Saturday, March 3, 2012

Sleepy but fussy

Reagan slept through the night last night!!! Thank goodness! She woke up a little after 8 this morning and was still very fussy. Lots of moaning, lots of whining, and crying too...it's a good thing she was sleepy today and took several naps to keep her nurse and Grandma from going crazy!! She spent a lot of time in her chair today...wasn't a fan of being put down. They had to put the arm restraint on her because she was quite bitey...to herself and others! It was just an all around yuck day for my girl! Please continue to keep her in your prayers!! I sure do miss her!! We will be going home tomorrow...it should be interesting to see how I'm going to juggle Reagan and Ryan at night! Something tells me Daddy isn't going to be getting much sleep for a while either!

Friday, March 2, 2012

Reagan has had a bit of a weird day today. She only slept til 3:30am this morning and then her nurse had to get up with her. She was happy this morning...a little crazy but happy. Then as the day went on she became very sensitive and also had some issues with nausea. From what I hear, tonight she threw a couple tantrums when she was watching her movie and it stopped playing! She didn't want to be held or sit in her chair...she just wanted to lay on the floor with her movie. My mom and her nurse both think she's upset that I'm not around but who knows. I just hope she sleeps tonight and lets grandma and her nurse get some much needed rest!!! Please keep her in your prayers!!!
Now I'm off to deal with her whiny little brother!!!
Reagan's baby brother Ryan Michael is here...labor was pretty quick and he was born at 12:53 this afternoon. He weighed in at 8lbs 12oz. I have pics but can't upload them with my iPhone.
Noon- Almost there, completely dialated, feeling pressure!
9am...already 4cm dilated (not really having big contractions)...time for the epidural!!!
Starting pitocin at 6:35am...

Thursday, March 1, 2012

And we're off...

Reagan went to bed last night around 11pm but then was back awake shortly after I went to bed at midnight. The night nurse picked her up and she eventually fell back to sleep around 2am and slept til 6am. When I woke up at 7am she was raring to go and she's been that way ever since. No naps. No sign of sleepiness. She was still a little sensitive this morning (to talking and music) but this afternoon she seems to have mellowed out a little (but you still have to take care not to overstimulate her). Her hands/feet are a little cool and clammy but I'm praying she'll fight off the bad days and not give anyone any trouble while we're gone. She's still a little rolly polly and she's been pretty precious and sweet today overall. Our plans for tonight...the hospital is supposed to call sometime in the near future to tell me when we're supposed to go in. I was told it would be sometime between 6-8pm tonight (assuming they have a bed). Reagan's nurse is staying here with her literally the entire time we're gone. She is the only other person that knows how to administer all of her medications/formula and she's not even going to get paid for this...she's just a great person and knows we have no other options!!! Grandma is coming in first thing in the morning (she has to work tonight) and she's going to stay here through Monday to help out (but even she doesn't know how to do meds). Tonight we have a neighbor coming over to assist Reagan's nurse (our sweet neighbor who raised all the money for the walkathon). It really is nice to have such caring neighbors!! As for me, I'm just trying to take one thing at a time. I've been running errands all day and I'm still not sure I have everything done. I am most nervous about leaving Reagan. I have NEVER been away from her for 24hrs since she was born!!! The only time I ever spent a night away was for our anniversary a few years ago and we didn't even leave until she had been given all of her medications, my mom watched her overnight, and then we were back early the next morning in time for her am meds!!! Don't get me wrong...I'm not one of these overly clingy moms. It's just that Reagan requires a lot of work and I'm the only one that has ever done it all!! But I know she's in good hands...I just hope she behaves herself!! Please keep us all in your prayers!!!

**Update** No beds available until now...8:30pm. We're headed to the hospital now...