MRI Results...

I'm going to write about a lot of our experience only because I want it recorded for my own benefits, if you wish to skip to the results feel free, I won't be bothered by it, in fact I'll never even know lol.

Miss K woke up cranky today, she did not want to be up, she wanted to sleep.  I can't say that I blame her, I wanted to stay in bed as well ;).  She couldn't eat solid foods after 3:00am, we kept her up the night before until 10:30pm trying to get her to eat, eat, eat.  Truth is she's not a snacker, she prefers 3 meals and that's it, so getting her to eat until 10:30 was near impossible.  She was allowed clear fluids and Jell-O until 9:00am so her breakfast was Jell-O jigglers and apple juice...it didn't go over well at all, not that she was mad at what I was feeding her, just that she is not a breakfast kind of kid, she never eats more than a tiny bit each morning and getting that much in her is tough.  She had a few tiny bites of the Jell-O then played with it, can't blame her there either, Jell-O jigglers are fun to play with ;).

We arrived at Primary Children's Hospital right on time.  Miss K was just great with the pulse ox and the blood pressure cuff, she's used to these and didn't mind them at all.  The nurse wanted to use an under the arm thermometer, Miss K wasn't having that though!  The nurse suggested under the tongue instead and Miss K opened right up and allowed that for some odd reason.  Next comes the IV...Miss K knows exactly what those are, she knew immediately what we were doing the second we tried "assuming the position", so to speak.  A lot of violent kicking and screaming, it took 3 of us to hold her, I had her chest to chest with me, both of her arms tucked under each of mine with one nurse behind me finding the vein, one in front of me holding Miss K's arm, me squeezing as tight as I dared and Daddy holding her legs down because, darn, those little legs are strong!  She was using them to push away from us all and doing a pretty darn good job of it!  So much struggling commenced that it took almost 10 minutes just to get her hand properly prepped and the vein raised, then another 5 or more minutes getting the IV in, and because she was already worked up and ticked off at us all she kept screaming and struggling through the tape being placed as well.  Once we were done they brought a treasure chest and let her choose a prize, the only girl toddler friendly prize in there was a Cinderella puzzle, thank heavens she was thrilled with it...Note to self:  find some great little girl toys and donate them to PCH for their prize boxes...

IV in and ready and we're taken back for the MRI.  They had me snuggle Miss K while they pushed the sedation medication through her IV, they had to double check her charts and make sure to use a certain medication though because their usual medication interacts very badly with Digoxin.  Miss K fought the sedation hard, once we thought she was out she started thrashing around, we got her settled and assumed she would be fine and then I realized there was a safety pin in her pants (yes, she's tiny, every pair of pants she has that isn't adjustable waist must be safety pinned, or taken in with sewing, so they don't fall off of her non existent hips and bottom), I majorly disturbed her removing the pin from under her back :(, she wouldn't calm again after that so the nurse had to push another medication called Versed, this one knocked her out in seconds and she didn't even twitch.  The nurse assured us Miss K was completely fine, she would watch her 100% of the time, but the MRI was going to take 30 minutes or more and after that we would be stuck in recovery with Miss K for another 2 hours so she pretty much forced us out of there and commanded we go get some lunch so we'd be better ready for the long wait later.  I very reluctantly left my baby in their, hopefully, very capable hands and we ran down to the cafeteria for some food...wow, can I just say "flood of memories"?!  I almost couldn't handle that cafeteria and it's food today, every terrible memory from 3 years ago came back to haunt me down there.

We made it back into the MRI recovery room just as they had gotten Miss K settled in there.  They wanted her to sleep at least 2 hours straight to make coming out of the sedation a bit more pleasant.  Lucky for all of us it was Miss K's normal naptime at that point and she was more than happy to stay asleep, in fact she slept soundly without a stir while the little girl right next to us, her bed was touching my shoulder, was screaming at the top of her lungs and putting up a huge fuss about waking up from her sedation, it was so bad the nurse was practically begging the parents to take the little girl home, she was sure their child was just fine and would be better in familiar surroundings but the parents were not so sure and just stuck around, I know everyone in there was very relieved when they finally left after over an hour of listening to that sweet girl scream.

Miss K slept the full 2 hours just great, and amazingly she woke up quite easily and very happy, in fact she was quite goofy and out of her wits and it was a bit entertaining as well as unsettling, it's not fun for a mom to see her 3 year old act so out of sorts, even if she's happy doing it.  Miss K did great, she ate a whole popsicle on her own, this is not normal at all, she hates cold things and normally won't touch a popsicle.  She also ate cereal for the nurse and drank juice just great.  We were released quite quickly with our only instruction being never to leave her alone in the next 24 hours and never to leave her with any siblings or sitters for 24 hours.

Miss K started her screaming and thrashing as we got into the car, she did this for about 20 minutes, constant screaming and thrashing about in her carseat, we couldn't calm her no matter what we did.  But after 20 minutes she decided to eat more cereal and fell asleep while chewing (it's OK, I watched her close, she did not choke), she slept the rest of the way home.  Since getting home she has been very unbalanced, she can't walk straight no matter how hard she tries, and she's still acting quite loopy, doing silly things and acting very crazy.  She's also very visibly tired and should sleep easily tonight.  Otherwise she's doing fine, heart rate has stayed perfect from beginning to now.  We did have another bad parent moment today and completely forgot to give her her afternoon Propranolol :(, but I don't feel it's a bad thing with all the sedation medications in her that are slowing her heart rate.

Before results I will update a tiny bit about her past week.  Last Wednesday Miss K started taking Cyproheptadine for her migraines.  They had us start out at 1/2 dose for a week to get her body used to it then we went up to a full dose, in the very short week of just 1/2 a dose I already noticed a HUGE improvement in Miss K.  She only complained of her head hurting just 2 days and both times were first thing in the morning before even getting out of bed so I'm not sure it was even migraines but rather waking up making her feel a bit off, after breakfast each day she never complained of her head again.  Miss K's comprehension and speech has changed quite a bit in the past week as well, she's a lot more attentive and seems to understand more and she is a lot happier and a lot more active.  I feel terrible realizing that her headaches were more than I even could comprehend, from the way she acts they must have been pretty constant and pretty debilitating :(.  I'm still leery about the medication, I really don't like giving my baby girl medications and adding one more makes me nervous, but the outcome already has me thinking this is a really good thing.

Our Pediatric Neurologist is just as awesome as our Electro Physiologist!  She received the MRI scan within just a few hours of it happening and she called me barely an hour after we left the hospital...frustrating enough my phone decided not to ring at that moment and I missed her call, we were left stressing over results until after 5:00pm, 2 hours later, before she finally had another moment to call me back.  The MRI showed no reason for the migraines and no reason for seizures, also no seizure activity at all.  Both these things are GREAT news and really what we wanted to hear...but now we're left to wonder what in the world is causing Miss K's migraines?  Also the MRI revealed a very interesting find, not life threatening and not debilitating in any way present or future, just interesting, as the Neurologist says.  Miss K has an old Stroke in her brain, apparently it is very old, the Neurologist says it happened when Miss K was a tiny baby and that she very strongly feels it happened during Miss K's 48 hour long SVT episode that we were unable to break during her PICU stay.  It makes sense, I can't imagine that episode NOT causing some sort of damage in her little body.  This does bother me, a lot more than I've let on thus far, a Stroke is not something you want to hear your child has had for whatever reason.  But the Neurologist was very reassuring that it is not anything to worry about.

And there we have it.  Miss K is having migraines, it's apparent she really is, after seeing such great results from her migraine medication.  But there is no apparent cause for the migraines, we're just left to wonder and treat.

Thank you, everyone, for you love and support and prayers today, they were most definitely felt.  Somehow I was a lot more calm than I thought I ever could be today, I strongly feel it was all your prayers, thank you.

Primary Children's Medical Center 8-28-11

Last night we had 2 more episodes of SVT. The first was during her bath, she came out of it on her own within 12 minutes. The second was just after I put her to bed for the night, I went to step out and get myself ready for bed but as soon as I pulled the curtain to leave she went into SVT, she had gotten the hiccups, which are notorious for making her go into SVT. She didn't want to come out of it but I finally got her to by blowing in her face, it also made the hiccups go away :o), she was in it about 25 minutes or so. After that she calmed down and went to sleep. I was exhausted, I don't get much more than a few hours of sleep at night here. But Miss K was on a 2 hour feeding schedule last night, she usually goes 3-4 hours and only wakes up to eat because we wake her up, she was really good at waking herself up last night. So I got maybe 3 hours of sleep total. I'm beyond exhausted now, and naps here are pretty much impossible with all the Doctors and nurses popping in and out constantly.

I got to talk to the Cardiology team as well as the PICU pediatric team this morning, they came in together for the first time ever, which I immediately took as a good sign :o). The Cardiologist is very comfortable with keeping Miss K off the Amiodarone drip and moving her upstairs to regular care, YAY!!! The pediatricians are a little more skeptic but they realized it was the Cardiologists call not theirs since she's really not their patient and she's completely healthy and stable in every other way besides her heart :o). So the Resident said she would put in the order to have her discharged from PICU and moved upstairs :o). I'm so excited! The only thing that I didn't like hearing was that the Amiodarone drip stays in babies system for about 7 days and that in about 4-5 days is when we'll know if the oral Amiodarone is doing it's job taking over effectively. They did not say if that means they will be keeping her here for another 4-5 days or if they'll send her home to be monitored closely by me?? They did say that if she's great after that many days then they've done their job, if not then they'll up the dose of Amiodarone for her. So as of 2:00pm today we moved upstairs to the 3rd floor! I'm so happy to be out of PICU! But, our room is a lot smaller than the first 3rd floor room we got, and we don't have a bed in here, just the same old chair that makes into a very uncomfortable bed but it's much, much better than PICU!

Daddy bought a heart rate monitor and we will be hooking her up to it here while she's on their monitor so we can see if there's any differences in the way they work so we can work it out and know exactly what to do at home to read it correctly.

So we're on to the home stretch, I feel home calling my name and I'm sure I'll be able to answer it for good in a few days :o). Let's hope Miss K feels the same, lol!

Primary Children's Medical Center 8-25-11

Good news, good news, good news today! YAY!

Miss K hasn't had an SVT episode since yesterday morning. The nurse and I were thinking that maybe she was still having SVT occasionally was because of her infiltrated IV, the Amiodarone wasn't getting into her system fast enough. Now that's been fixed and she's been great since! So the Cardiology team came by and said they are very impressed, we lowered her Amiodarone IV drip a little in the middle of the night, they asked that we lower it even more today so we are officially onto the weaning side of things!

The PICU pediatrician team came by, they haven't seen anything significant in her recent belly x-rays. She was supposed to have 3 more stool samples and all 3 needed to come back negative for blood but she hasn't had a poop in almost 24 hours, kind of hard to do that on an empty tummy when it's been empty for over 48 hours right? Today they decided to let me feed her, YAY! So now we could use all the prayers we can get that she's 100% OK in the tummy area, they are still weary about it and want to see absolutely no blood in her stool ever again, they think it should be fine since her heart rate has been normal for so long and should stay normal from here on out.

So this means no more Amiodarone drip within the next 24 hours sometime, no more IV fluid drip as soon as I start feeding her, and no more Zantac drip as soon as her stomach acids get used to food again. I guess that just leaves weaning her off the Keppra drip and getting her onto oral with that, as soon as this happens there will be no more IV's, YAY YAY YAY! I believe tomorrow they will be transferring us upstairs to the regular care unit :o). We're hoping to be home by Sunday, the Doctors laughed at me when I said this but I'm trying to think positively, if not Sunday then hopefully no later than Tuesday morning...Here's to hoping and praying!

It's Roo's 2nd birthday today, I'm so sad I can't be with him right now :o(. But I'm escaping tonight to head down to my parents for icecream and cake with him :o). He and I will spend a peaceful night at home together tonight and a great day together tomorrow then head back down here tomorrow evening for icecream and cake again :o). Daddy will spend Saturday and Sunday at home with Roo and then we'll see what we need to do for next week, we're still hoping to be home all together but if not we'll make some plans for Roo again.

Primary Children's Medical Center 8-24-11

Last night was a very rough night. The PICU team came in to tell me they were seeing the same thing in the 3rd x-ray as they saw in the second so they were going to assume it wasn't just poop and could be more serious. Then they dropped the horrible bomb on me...I was ordered not to feed her all night. They put her on IV for fluids and I spent the night getting up every few hours to pump and freeze my milk. Luckily Daddy was here, I couldn't hold her without her freaking out she was so hungry and she could smell me. Daddy took care of her all night long while I tried to sleep a little between pumping. She only had 1 episode of SVT, but she never ate or burped or was even bugged except that one time so we don't know if she didn't have SVT because her medications are finally working full swing or if it's because she was sleeping soundly and left alone most of the time.

The Cardiology team came in early this morning, a first early visit in a few days! They are impressed with Miss K's progress and they like what they're seeing, in the past 24 hours she's only had 8 or 9 SVT episodes :o). So they are starting on the oral version of Amiodarone, YAY! We are on to the weaning process! I can finally see a light at the end of the tunnel, though it may still be a little farther away than I want it to be. They also doubt there's anything wrong with her belly but they're letting the PICU pediatric team treat her as they wish, better safe than sorry.

The PICU pediatric team stopped by soon after the Cardiologists. They had taken 3 belly x-rays throughout the night and they said all of them looked the same except the last one, which looked more normal but not satisfying enough for them so they've ordered a strict no feeding diet all day today and maybe all night tonight :o(. I'm heartbroken, it's so hard to listen to her cry and hold her while she eats my shirt and cries :o(, it's such an easy fix to make her stop crying and be happy, not to mention it's one of the only things I can do to comfort her through all of this, and they've taken it away. So here's to a very long day of consoling an inconsolable baby and trying to pump somewhere in between to keep my milk supply going good and strong through all this.

8-24-11 A New Report:

Just got some bad news from a PICU pediatric team member...Miss K had 2 stool samples come back fine and the last belly x-ray came back perfect but her latest stool sample has blood in it again :o(. And they did blood tests and they came back positive for a high white blood cell count :o(. So now they know she's trying to fight some infection somewhere but they're not completely sure where, they're assuming it's her bowls. They have ordered that she not be fed the rest of today and all night then we'll go from there. They won't put her on antibiotics, they want to see it resolve itself if possible :o(. They've put her on Zantac to help with stomach acids from her empty tummy. It's so sad, she's beyond hunger now just rooting around trying to find food but she does it like she knows there isn't any, she's just being hopeful :o(. Luckily she's not really being too fussy much of the time, but I feel so bad for her :o(. We're just praying this bowl issue sorts itself out within the next 24 hours so she can eat again and get out of here!

She's only had 1 SVT episode so far today, it did last 1 hour though and my blowing in her face didn't stop it so we did the ice treatment, it worked like a charm and she came out of the SVT very quickly.

She had an infiltrated IV in her foot :o(, yesterday it looked angry and red but we thought it was a reaction to the tape, now the nurse and I both feel really bad :o(. Her poor little foot is all swollen and puffy and red and purple, it looks really awful :o(. The wound team said just to watch it though and it should clear up, but I'm worried because her other foot has the same issue only it didn't get that bad before we caught it and it's still looking the same :o(.

Miss K is quite the cutie though :o). She's changing like crazy. She already has quite the personality, so sweet and mellow :o). She is smiling now, I know it's quite early for this, we're all very surprised to see it but it's not just her making gas look good, lol! She has those smiles as well but it's so easy to tell the difference :o). She loves to smile at her Daddy mostly but I get a few good ones here and there :o). Luckily she LOVES her binky, this has been a huge lifesaver through everything. I never thought I'd say it was a good thing for a baby to like the binky until now.

I keep myself sane by writing all of this down for you guys to read and working on Heritage Makers projects, mostly Roo's year 2 book trying to get it done very soon, it helps me to work on his book because it makes me feel like I'm still trying to be a good mommy to him even though I can't be with him right now.

I want to thank all of you for all your thoughts and prayers again. I also want to thank everyone who's offered/given help in whatever way you've done, it's all greatly appreciated, I have no idea how I'll ever repay any of you. I've got some awesome friends and family in all of you :o).

Primary Children's Medical Center 8-23-11

Yesterday started a whole new list of things wrong with Miss K :o(. It wasn't an easy day for me, and today isn't going to be much easier until it's over and we've figured out what's going on.

First off I'd like to acknowledge the fact that I had a good nurse but she wouldn't listen to me at all. She just didn't get the Mommy thing at all, because she was the nurse and what she thought was what mattered in her mind, not what I thought at all. She obviously wasn't a mom, I don't think she was even married.

Miss K started her day acting like she had a tummy ache, being a mom I know what the tummy ache signs are in babies and I'm sure that's what she had. I told the nurse and asked her for something for it, Miss K wasn't eating well because of it and I was getting kind of worried. The nurse just looked at me and said she looked fine to her but she'd ask someone if there was something we could give her. She then proceeded to tell me she really didn't think Miss K needed anything, argh! Needless to say I never saw her put in a request for tummy medicine for her and we never got any. Then Miss K's diapers started to look kind of worrisome to me, I know what a newborn's poop is supposed to look like and Miss K's just didn't look right to me, not mustard colored but rusty colored. I showed the nurse the first diaper, she just took it and weighed it and threw it away, I was so mad! The next diaper was worse so I asked her to look at it again, she looked and shrugged then told me she would ask someone about it. I never saw or heard her ask anyone about the color. The third diaper looked like there was blood in it and it was mucusy, she took this one a little more seriously and charted it then when a Resident happened to come by she asked her about it, describing it as seedy and red, I had to correct her and tell the Doctor she is breastfed and it's supposed to be seedy but not rusty red like it was, the nurse glared at me and said she didn't like the seedy part about it, well I'm sorry but maybe you just haven't paid much attention to breastfed babies! The Resident made the nurse further mad when she agreed with me that if there was no formula in the diet then the seedy part was normal. Her diapers started to look a little better over night but it took a shift change and a new nurse who'd been a mom and a nurse for over 30 years to come in and send in a stool sample to see if there was blood in it. We also got a belly x-ray to make sure everything's moving right. So far the stool sample came back very positive for blood :o(. I haven't heard about the belly x-ray yet. Miss K also had a jerking problem yesterday, I was holding her and her right arm suddenly started jerking uncontrollably, kind of like a large muscle twitch. It went away fast but she did it again a few minutes later and her leg joined it as well. I told the nurse and she just shrugged! When it happened a few more times I happened to catch the nurse while it was happening so she could say she saw it, she still just shrugged her shoulders at me! So I started grabbing Residents and Attendees and pulling them in to ask about it, we finally got a Neurology consult. We're hoping it's just newborn twitching but they've put her on an anit-seizure medication just in case and they're going to do an EEG on her brain to make sure everything is OK. And to top things I noticed a nasty, red sore on Miss K's arm where an IV had been before. The nurse agreed with me and said it didn't look good but she waited a few hours before doing anything, the wound started to look worse and it was after hours for the "wound team" so we couldn't call anyone to come in to look at it anymore. This morning her arm looks much better, the new day nurse put some Neosporin on it and thinks it will be OK. But then we noticed a huge hard, red and angry looking bulge on the top of Miss K's left foot where another previous IV had been. So we're calling in the "wound team" after all to come in and look at that.

The Cardiology team just stopped in and delivered the bad news...they still don't like how often she's going into SVT, which is down to about 10 times in a 24 hour period but only lasting about 30 seconds each time. They are upping her Propanalol dose and holding off on putting her on the oral Amioderone one more day, ARGH! So that's pushed us back yet another day on going home. Looks like Saturday is our nearest projected home date :o(. I'm really getting sick of this, it's so frustrating.

I'm going to take a few minutes to have my cry about yesterday's stress and worries and today's new bad news and stressful worries...more updates as they come!

As for Roo's birthday...it's obviously going to have to happen here in Salt Lake. As of right now I think we're going to shoot for Friday afternoon/evening to party. We're most likely buying a cake instead of home made. And we're trying to decide if we will party here or if we'll go to a nice restaurant, it will depend on how Miss K is doing.

8-23-11 A New Report:

After my last update the whole PICU team of Doctors came for rounds and talked about Miss K. They are concerned about the bloody stools, as am I. But they are taking large measures, they don't want to miss anything with her having SVT already. It could be caused by the SVT, not enough blood or too much blood getting to her bowls making them sluff off into her poop :o(. They are going to have us keep going as usual for now but if the blood doesn't go away then they're going to force me to stop feeding her :o(, I'm not sure what this means, I don't know if they're thinking IV fluids only, feeding tube or formula from a bottle. No matter what it is they're thinking I'm praying hard it's not going to happen, I can't stand the thought of them taking away the one thing I can do for my baby. I'm having a hard time with this.

I have complained about the nurse's reaction to my observations yesterday to about every Doctor and nurse who's come to talk to me today. They finally sent the charge nurse in to talk to me, I let her know everything that concerned me yesterday, they said they'd advise and train the nurse better to acknowledge parents concerns immediately, even if it's only to make the parent feel better, which in my case they felt it should have been done because there really was a serious issue going on.

Throughout the day Miss K and I have had a lot of visits from various Doctors and technicians. We've been through 2 belly x-rays, the first one they decided looked normal but had what they thought was poop in the intestine (which is totally fine) but sometimes it's easy to mistake a bad bubble for poop so they sent them in for a second x-ray just barely, we'll find out soon what it says. Her poop is looking much better but they're still keeping an eye on her. They will continue to do periodic belly x-rays until they're satisfied that she's fine. They are encouraged by her good looking poop though. We've also been through an EEG to check her brain waives and see if she's having seizures, this came back mostly normal with a slight "variance" in it that suggests normal newborn brain activity but could be something worrisome :o(. So they're keeping her on the seizure medication called Keppra, they want an MRI but can't do one until she's got her SVT completely under control, which could be a few weeks or months, they aren't in a hurry as long as she's on the Keppra and responding well.

So Miss K now has a team of cardiologists and a team of neurologists working with her as well as a team of regular PICU pediatricians. It's getting confusing as to who's with who and what they all do.

She has been doing pretty good with her SVT today, she's only had 3 or 4 episodes of it, but 2 of them lasted 20-25 minutes and the last one lasted over 30 minutes. Two of them have also worried the nurse into a panic at one point because she had a bad rhythm with it. The 30 minute one took some work to get her out of it, she wouldn't convert back to normal rhythm on her own so I had to blow in her face and make her catch her breath, thankfully this worked and prevented them from using Adenosine pushed through her IV like they've done before. They are going to be watching her more closely now.

It's going to be a long week this week. I feel like Daddy needs to be with Roo more than me but I so want to be selfish and make him come be here, lol! It's so hard being here alone through this.

Primary Children's Medical Center 8-22-11

It was obvious to me yesterday, even though I was not here myself, that Miss K needed a little more of something to help with her SVT. But since the Doctors didn't even check in to see how she was by phone at least, they had no idea until today, therefore they just barely made their decision whether they should do more or stay where we are.

The new plan is to keep her on the dose of Amioderone that she's on now but they want to up the dose of Propanalol. This means keeping her here in PICU another full 2 days because they want her to have at least 3 doses of the new Propanalol amount before they wean her onto the oral of the Amioderone. Propanalol is only given every 8 hours so that puts us at getting the 3rd dose tomorrow around noon sometime. The oral Amioderone is also given every 8 hours so we won't be off the IV drip until sometime Wednesday evening or Thursday morning. They don't want her going home until she gets at the very least 48 hours of observation on the oral Propanalol and oral Amioderone, then if she's doing well they'll send us home.

I'm frustrated. I had plans, things all worked out over a month ago about how these past weeks and the next few weeks were going to go. It's nobody's fault that it all got screwed up but it's still frustrating. I had a big birthday party planned for Roo this Thursday evening, I invited all our close family and had a Mater themed party all planned out, right down to an easy but cute and way fun home made cake. That's now not possible, it looks like we'll be celebrating here at the hospital or maybe we'll take off and go to the Zoo Friday, or maybe even do a birthday party with whoever can make it at Sizzler or something with a store bought cake (hopefully a Mater one if possible). Poor Roo :o(.

Poor Miss K with all her "stickers", tape and wires! Between the pulse ox that's always on her hand or foot with a wire connected (and the possibility of light burn if they don't move it around often enough), the blood pressure cuff we have to move around from leg to arm and never on an IV limb, her IV's (she has to have 2 at all times), her leads for the heart monitor and the stickers for the EKG's she's a real mess! The sticky from all of this is horrible and won't come off so she's covered in dirty sticker marks where things have fallen off or been moved. The tape they use to keep cotton balls on bleeders and to keep IV's in place makes her red and irritated, even swollen in some cases. We're always tangled up with wires and IV's, it's always a mess and a real pain to deal with.

She's getting stronger and wanting to hold her head up more and more. She's getting more and more alert for longer periods of time. She started trying to coo for me today, it was so adorable! And she's getting pudgy :o), starting to get rolls on her legs and arms :o). She loves to sleep chest to chest, it's a great way to calm her down when she's all worked up. When she's in a really deep sleep she sleeps with her mouth wide open and drools all over. She loves to have her hands by her face at all times, she's always got her hands on her face in some fashion, it's so cute, sometimes when she's upset and just starts calming down she puts her little hand over her eyes like she's got a headache, lol!

Primary Children's Medical Center 8-21-11

I'm sitting here in the PICU holding my precious little girl in her most favorite position, chest to chest. This update is going to take forever to type because I'm almost doing it 1 handed but I can't bring myself to put her down for a minute.

I left Miss K with Daddy last night for a few hours and joined the Heritage Makers team at reunion at the Salt Palace, it was great to get away for a little bit, I was able to clear my mind and think of something completely different for a few hours, while also enjoying a great meal with Team Hanks :o), I am so thankful for such an awesome sponsor, she has such a big heart and was so great to get me out of the hospital and out with friends :o).

I just spent my day away from the hospital, it being Sunday, Daddy having the day off from work, Miss K taking a bottle very well and me having tons of milk stored in the freezer here we decided I needed some time with Roo. So I got up early this morning, packed up my dirty clothes and left Daddy in charge of taking care of our baby girl. I drove to my parents house and picked up Roo and all his things and took him home with me. We spent an awesome day together, nothing special at all, though I really wanted to spoil him and do nothing but play, sadly it had to be a normal routine day because of all the laundry piling up and I really needed clothes for the week. Roo didn't mind at all. He got to take a shower with me, he loves showers, and I of course was in heaven being in my own private shower taking my dear sweet time! We did laundry together all day and snuggled and watched "Open Season". We ate 2 meals together, home cooked meals :o), and took a long 2 hour nap together in my bed (yes I did spoil him a little bit and snuggled him in our bed all through naptime). I so did not want to pack up and leave when it was time!

Roo was so cute today, he kept asking where the baby was, he really wanted her with him. He also kept asking where Grandma was, that kind of broke my heart :o(. He was really excited to be home though. When I had Miss K Roo gave her a plush bunny blanket thing, when we got to the house last night he saw it there and insisted baby sister needed it, lol :o) so when I got everything packed up to go back to PCMC we had to make sure it got put in the bag as well. We came down the the hospital late this evening to trade off with Daddy and Roo insisted on carrying the bunny upstairs to PICU and gave it to her himself with a kiss on the cheek, it was adorable :o).

So now for my Miss K Report:

All day yesterday and today we just monitored her very closely, she's still on the Propanalol and Amioderone, the Amioderone is still through the IV. She did great the past 2 days only going into SVT while eating or as she was waking up from a deep sleep. The Doctors said the sleep to awake SVT is to be expected, I guess everyone normally has an accelerated heart rate when they first wake up and stretch, Miss K's is just VERY accelerated, they don't really like it but she comes out of it quite quickly, averaging only about 20 seconds in SVT before going back to normal rhythm, so they're not going to put much thought into it. She has had less and less episodes of SVT, YAY! So we have 1 or 2 more doses of oral Propanalol that will be given over night tonight and then they are thinking they will be weaning her onto the oral Amioderone tomorrow YAY! I'm so excited I can hardly think about it for fear of getting my hopes up and having it not happen. They did mention they may consider upping her Amioderone dose a tiny bit tomorrow but they don't know for sure yet, we'll see. I guess the Cardiology team never made it by to talk today, or Daddy never saw them anyway. It must be because it's a Sunday, I'm sure I'll see them tomorrow.

So now I'm on to a long and hopefully quiet few days here in the hospital alone with Miss K while Daddy gets back to work and gets to sleep in our bed and use our shower and our toilet paper and spend time with our baby boy and eat home cooked food, etc., etc., etc.

I can't stop myself from thanking all of you yet again for all your thoughts and prayers. I'm amazed at all the love we've felt from all of you, I had no idea I had so many awesome people in my life :o), thank you all for being such wonderful friends and family, I don't know what we'd do without you! Your encouragement and sympathy has been such a great help to me. Thank you!

Primary Children's Medical Center 8-19-11

My first thought today is how frustrated I am with IV's! I'm getting sick of them, they're awful torture on a newborn baby. Our sweet baby doll has almost ran out of good veins, literally. Every time an IV goes bad and they have to do a new one I want to cry. I hold her hand and her binki in her mouth the whole time while I try to stay strong for her and whisper in her ear how much I love her and how sorry I am. She has had one IV in her head, once in each hand, one inside her right elbow, 2 inside her left elbow, once in her left foot and 2 in her right foot. They try for a vein in her hand every time, I have to tell them to stop because I've watched the previous IV team fail, there's not one in her hands big enough any more. I'm tired of watching them poke an IV needle into her and then realize they missed or the vein is too small after all, then they pull it out of her and try again elsewhere, making her cry yet again. It's been tough. They've pricked her heels for blood over 8 times per foot, her heels are covered in scabs :o(. They don't have diapers that fit her either, it's Preemie or Size 1 around here, the Preemies were OK the first day we were here but as of Wednesday she has officially outgrown them. The Size 1's are too big and they have been rubbing on her belly button making it irritated and bleed, I'm afraid it's going to get infected or that the umbilical will get ripped out instead of falling out on it's own :o(. I had to have Daddy bring all the newborn diapers we had at home down with him when he came back last night.

One of my brothers stopped by to visit yesterday on his way home. It was nice to see him. Between 7:00pm and 8:00pm they kick all parents out of the PICU for shift change and I think they make rounds as well, but mostly I think it's to force us to leave our kids rooms for a minute to gain better perspective and move around a bit. My brother showed up right about 7:00pm, Daddy was still not back yet from being home for a little bit so I was worried about spending that hour alone knowing nobody was with my baby girl. It was great that he showed up at that time, he and I walked downstairs and outside where we sat on the benches away from the smell and the suffocating feeling and we just talked, about Miss K, about family, about nonsense stuff. It was good to get out and be away with someone to talk to. I'm so grateful he cares enough to take the time to stop and visit. I feel bad because when we did get to come into Miss K's "room" he was exposed to what our days are really like instead of a calm moment where he could just hold her and get to know her for a minute or two. He came in with me just in time to hear she needed a new IV and the IV team was called. It was also time to feed her so I shoved him over to the bassinet with her binky and told him to console her and hold her hand while the nurse took her vitals so I could pump, I think he was kind of freaked out about it all and didn't know quite what to do. The nurse finished her exam and then I had him hold her while we waited for the IV team to show up. It's so awkward to hold her with all the cords, I think he was a little uncomfortable about it all. Then the IV team came and my poor little brother sat in the chair and tried not to watch as they tried for vein after vein before finding an OK one to use. I could tell he didn't like it, I almost thought he might pass out, cry, or leave the room, it's really not a pretty thing to watch. Then he had to endure the embarrassing part of brother being in the room with his sister nursing her baby for 20 minutes, lol, both my brothers have a problem with this even though I'm fully covered, they just have that modest shy personality where just knowing what's going on behind the nursing cover is enough to make them uncomfortable ;o). He got to hold her for a few more minutes after she was fed and then he left to finish his trip home.

Miss K had a pretty OK night. She spent the whole night going in and out of SVT but she's not doing the whole in one minute out the next thing so much any more. She'll go into SVT but only for a second then come out of it completely for a little while or she'll go into it and bounce back and forth for about 5-10 minutes before coming out of it completely. It's good to see some progress. We've noticed that the SVT doesn't come when she's calm and still but when she's disturbed for whatever reason it tends to come back, mostly when she's being poked and prodded, or when she's crying and the biggest thing that's bringing her into SVT is breastfeeding. Everything is pretty much normal newborn activity that's putting her into it. We've questioned putting her on a bottle to see if that makes a difference in her feeding but we really don't think it will, breastfeeding or a bottle would be the same in my opinion, I doubt it's the position or anything like that, I'm pretty sure it's the beginning of eating when every baby sort of holds their breath for a second as they get started. But I am not opposed to trying it, as long as my baby is getting my milk I don't care how she's getting it. I don't know for sure what we'll do but we may try introducing a bottle today??

The Cardiology team came in this morning and spoke to us, they're impressed with her progress on this drug. It's taken a little longer than they hoped, and a higher dose than they hoped but they said it's definitely working and it's the correct drug to have her on, now we're down to working out what dose she needs to stay out of SVT completely, once they get that figured out with the IV drip they'll wean her onto the correct dose of oral and she will be able to leave PICU to a normal room and stay for observation for about 48 hours before they release her to go home.

So it sounds like we're on the home stretch, FINALLY!

Side note: Miss K started a bad trend. Wednesday night her Cardiologist came in to talk a minute and told us another one week old baby had just been admitted with SVT, then he came by at 6:00am and told us 2 more one week old's had been admitted through the night. So now with Miss K they have 4 one week old SVT patients. Apparently one of them isn't doing so great, unlike Miss K, they've been forced to switch him from medication to medication in a hurry because he's not handling being in SVT well at all. The Dr. said he's got Miss K beat in the race to see who can go through the most medications the fastest. Definitely one blessing I can count in this horrible situation! I'm so grateful, and can't thank Heavenly Father enough for making this so much easier on our little girl than it could be. She's handled it well and they've been able to take it slow figuring out what's best for her, which is much better on her body and her heart. I've been praying for the other 3 babies, hoping they make it through this and that their parents are OK through it all. It's not fun and I think it's horrible that anyone has to go through it.

More updates to come as we progress through this...

Primary Children's Medical Center 8-18-11

Tuesday, after my last update, Miss K had quite a few more episodes of SVT. Somehow Daddy was the only one able to break her out of it about 3 times before they could consider using ice (See Physical Maneuvers). He's such an awesome Daddy. The first SVT episode she had after Daddy got back to the hospital he leaned over her bassinet and talked really softly and quietly in her ear, pretty much cussing her out and letting her know she had to come out of it on her own, his own little Daddy talk, this worked awesome, she came out of SVT without any intervention. The second and third times that she went into SVT Daddy blew in her face multiple times to make her catch her breath, I tried doing it as well but for some reason only his breath worked, she came out of SVT on her own again. Then the "Daddy method" as I began to call it quit working and she wouldn't come out of it, we had to resort to the ice suffocation. In case I never explained that yet: They fill a bag with ice and place it over her whole face pretty much smothering her for 5 seconds to make her gasp and hold her breath, thus restarting her heart and hopefully getting out of SVT this is very heartbreaking and scary for a mom to watch, I cried every time. The first ice treatment worked like it had been before, but it took an hour to work. The second time we had to do it twice, then she went into SVT a third time and we tried the ice twice without success, nothing would get her out of it so they brought a team in and gave her a shot of Adenosine, which stops her heart for a split second and makes it restart into normal rhythm, this worked and she was OK for a few minutes then she went right back into SVT. She wouldn't come out of SVT this last time, we tried every method without success so her cardiologist sent her to PICU and put her on an IV drip of a type of beta blocker. We kept her on the oral Propanolol as well. We had a very long and sleepless night Tuesday night trying to get her out of SVT and keep her calm and happy.

We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.

Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.

Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.

Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.

So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.

Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...

So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.

Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!

We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!

8-18-11 A New Report:

Miss K has been very frustrating today. We started her on that new medication this morning as I reported before. She only stayed out of SVT for 3 hours then went back in. She then started jumping in and out of it sporadically, literally one minute she would be in it and the next out, for about an hour or two. She got herself out of SVT and stayed out for about half an hour then went back in again and continued with the sporadic in and out again for about another hour. At about 5:00 she came out again and stayed out for another half hour and is currently in and out of it again. We had to up her dose of the Amiodarone drip, it seems to have worked a little bit. They checked her potassium levels earlier today and they were too high so we're currently getting ready to draw more blood, yet again (poor baby!), and have it checked again, it really needs to go down. Her blood pressure is getting a little low as well, her nurse isn't comfortable with how low it's getting so she's sending in blood for 2 other tests as well to make sure Miss K is still OK. They've just upped her dose of Amiodarone drip yet again, she just won't stop going in and out of SVT. She's been a very sleepy little girl today, this whole in and out of SVT thing is surely wearing her out. She has had a few minutes here and there of awake and alert time but definitely not half as much as she had yesterday. She's slowed down on the eating today as well.  And since she's not eating too well today I'm usually left with pumping at least one side after she finishes eating. Since we're going to be here a while I've decided to have Daddy bring some bottles back with him tonight and we're going to start trying to get her to take one well, if she will then I will get a chance to leave the hospital here and there to keep from going insane.

On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.

I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.

I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries!  We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.

I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.

As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.

Again, we are so thankful for all the love and support from all of you!