An ER Visit

This past weekend proved to be quite crazy and unexpected to say the least.

Thursday night we made our normal trip down to Miss K's grandparents house for the weekend.  Daddy had accepted a quick weekend job down in the valley working with a good old family friend from Southern Utah so we were heading to Grandma's house a day earlier than normal.  Friday seemed to be quite a normal day for Miss K, she acted a bit more tired than usual but nothing to really worry me.  By Friday evening she had started to act a bit off, she refused to eat her dinner even though it was one of her favorites, chicken nuggets and fries, she was very quick to tears and she was asking to "potty" about every 5 minutes.  I didn't think too much of it, just that maybe she was overly tired or something.  Daddy got back from his day's work and was snuggling Miss K on the couch, she was suddenly extra cuddly and clingy, within minutes she was violently throwing up, and it just kept coming.  We cleaned her and Daddy up a bit and sent them to the shower together, I had to pry her beloved blanket from her and toss it into Grandma's washer on a quick cycle to get it clean again.  Soon after cleaning up Miss K stated "My belly feels better now!", but I wasn't convinced, I hate vomit, it makes me vomit at just the thought of someone else doing so.  Lucky for me (and my sweet babies) Daddy isn't the least bit bothered by vomit, therefore Daddy is the vomit king, if any child is having tummy issues and throwing up I call Daddy, who cuddles them, provides the bucket when needed and cleans up any misses, he also sleeps in their little toddler beds with them through a night of puking whenever necessary, while I lay in our bed with all doors closed and a pillow over my head trying my hardest not to "toss my cookies" as well.  Yes, it's that bad.  I kept a close eye on Miss K, checking her heart rate and temperature constantly, refusing to let anyone feed her and insisting she stick to tiny sips of water or chewing on ice in order to prevent another violent puke fest.  Somehow I missed the second round of vomiting as I was getting Miss K's brothers ready for bed and Grandma was snuggling Miss K, so glad I didn't have to deal with it but so sad poor Grandma did instead, at least she had a bucket ready and Miss K did not miss though ;).  Immediately after Miss K's 2nd round I ran for her medications planning on it being another 20-30 minutes before her next round, if there was one, hoping that was long enough for her body to absorb the medications and prevent her throwing them up as well.  Turns out the 2nd round was the last round of vomiting for our sweet girl, thank heavens!  Daddy slept with Miss K on the futon all night, apparently it was a very restless night for both of them but no potty runs or boughts of puking were involved.

Saturday morning Daddy went back to working with our friend and I stayed at my parents house with the kids all day.  Miss K slept until 10:00 am, she had a very low grade fever (about 99.9), she didn't eat more than a tiny handful of Rice Chex cereal and a small serving of yogurt all day, she maybe had a few sips of water though she had me convinced it was a lot more than that as her cup somehow was always empty, apparently it was empty for other reasons I still do not understand.  She took a VERY long 3.5 hour nap, so very long compared to her normal 45 minutes to an hour.  I just figured she was sleepy from her sick tummy, I did not think twice about her using the potty every 5 minutes through the day since I thought she was drinking water like crazy.  The worst is I didn't even think for a second about Miss K's lack of food for the past day and a half, combine that with taking Propranolol (which has a side effect of lowering blood sugar) and you can have disaster, but being the distracted mom that I was this past weekend it never crossed my mind :(.  Despite Miss K's very long nap she still fell asleep around 9:30pm for bed, and slept silently completely through the night until about 9:00 am.

Sunday morning Miss K did not want to leave her bed, she snuggled into Daddy and just laid there until Daddy finally asked her if she wanted to eat, she was eager for food, she begged us for cereal and milk and we gratefully obliged.  I think she drank 4 glasses of milk in about 10 minutes, but she never touched her cereal.  She'd been awake about an hour when she suddenly took a turn for the worse.  Miss K looked horrible.  Her lips went BLUE.  Her complexion was extremely pale.  She was moving quite slowly.  I picked her up and asked everyone else in the room if they thought her lips were blue, I was praying it was the lighting, Daddy, Grandpa and Grandma agreed with me though, her lips were quite blue.  We pulled the stethoscope out and checked her heart rate, it was somewhere around 160 BPM, quite high for Miss K but not SVT and I was not hearing her classic PJRT beats, all sounded well.  We checked her temperature, she was at a nice 97.8 degrees.  This is about the time that Miss K started slurring her speech, we could barely understand her, and she started going limp in our arms and trying to fall asleep right there in the noisy family room.  I only debated on what to do for about 5 minutes, it was apparent to me that she needed to be taken to a doctor.  We quickly got ourselves dressed and bundled Miss K up, Grandpa and Daddy gave her a Priesthood Blessing (a sacred blessing in the Church of Jesus Christ of Latter Day Saints, in this case used to heal the sick and afflicted) kissed her brothers goodbye, and headed for the ER.  We took the 30 minute drive to hospital in about 15 minutes, all the while I was patting her face, calling her name and trying my dang hardest to keep her awake for fear she may not wake up if she was allowed to close her eyes.  The ER was quite quiet, we didn't have to wait to be checked in, in fact before we even got Miss K's name into the system a nurse was ready to take us back.  We got her into a room and settled to wait for the doctor.  While we waited I was holding a very cuddly Miss K, by the time a nurse came into the room Miss K was out cold and rag doll limp in my arms, the nurse laughed it off and said that would make her an easy patient, I scolded him and let him know it may be easier on him but it was freaking her Mama out!  He took her vitals and told us the doctor would be with us soon, he assured us the doctor was combing through Miss K's medical history and that they were all amazed at how much there was to read up on for her before treatment, he let us know the doctor may be a few extra minutes because of this.  Sure enough about 15 minutes went by before the doctor came to examine Miss K.  He checked her vitals and ordered a urine sample and requested they hook her up to the heart monitor, pulse ox and blood pressure cuff.  He then asked me about her seizures she had had as an infant, talk about panicking me!!!  He had his doubts but something was nagging him to at least ask about it, once I described the seizure activity she had at a few weeks old he decided we were not likely dealing with the effects of an over night seizure, whew!  He then had me go over all her usual symptoms of an SVT episode, which are NONE, I had to tell him that the way she was acting would only be the effects of SVT if she had been in an episode for 2 or more hours straight and I was confident she had not had any SVT for any amount of time.  He then decided her symptoms could be Digoxin toxicity, I assured him this wasn't likely since she has been on the same dose for almost 20 months and has gained 2 pounds in that time but he still wanted to be sure, he ordered a blood draw to test his theory.  The doctor had us take Miss K potty, she tried so hard to pee for us but she just couldn't go so the doctor ordered IV fluids.  The nurse came in to put in an IV and get blood, you would have thought Miss K remembered the drill from 2.5 years ago, the nurse asked her if he could put in an IV and she said "No IV!" and started to whimper, this sweet baby hasn't had an IV in 2.5 years, nor has she had blood drawn for any reason in 18 months!  I am amazed at how strong my sweet baby girl is, she cried but didn't scream and she held so very, very still for the nurse and technicians, they got the IV in in less than a second and then got the blood drawn just as quickly without much of a fuss. 

She was hooked up to monitors, I'm very happy to say everything looked and stayed perfect our whole stay, no worrisome heart rate or blood pressure. 

An EKG technician came in and hooked Miss K up to the EKG machine, she said her heart rate looked fine but they were sending it up to Dr. Hoffman, the on call Pediatric Cardiologist who first saw Miss K when she was born.  Then we were left to sit and wait, and wait.  Miss K watched cartoons and snuggled us, she asked to potty about 5 times but never gave us anything.  After 1 full bag of IV fluids she finally gained some color in her cheeks and perked up just a bit.  The blood work came back negative for toxicity but positive for infection, though it was very mild and nothing concerning it just meant she had an infection or had had one recently but her body was fighting it.  About 1.5 hours into our "visit" the two medical technicians, a very young man and woman who were so sweet and cute, came dancing into the room waving a pink and green thing in the air and saying "Look what we got for you sweet girl!  It's the neatest thing, it's a SUPER HERO cape!  We thought you absolutely needed one for being such a brave little girl."  Miss K smiled a tiny smile but I could see in her eyes she was excited, they sat her up gently and wrapped it around her then helped her lay back down and stroked her cheeks and hair. 

Another hospital personnel, non medical, came in and asked if Miss K needed a toy, he said he had heard her whimpering and crying during her IV and felt sad for her, I told him that would be nice so he left to see what he could find.  He came back with a squishy bath tub fish and a fluffy stuffed horse, I find it strange she preferred the fish over the fluffy stuffed horse lol.  When we still could not get Miss K to pee they brought in another IV bag of fluids.  It was about 45 minutes later when Miss K asked to potty again, the fluids were gone at this point, when she FINALLY peed she looked up and said "I went!" then giggled and said "I go pee Mommy!", I haven't seen her this excited about pee since she potty trained a year ago lol.  We took the urine sample to the room and waited for someone to come get it, then it was off for testing.  Another 30 minutes went by, Miss K fell asleep and slept very soundly. 

Finally the doctor came in to say the urine showed infection, Miss K has a bladder infection as far as he can tell, it needs to be cultured to make sure, this takes 2 days, so we will get a call in a day or two confirming or denying a urinary tract infection but until then she has been prescribed an antibiotic.  The doctor and nurses got to see Miss K's true colors at the very end, all that time they weren't too worried about her and thought she was acting pretty OK even though I kept telling them she was absolutely not acting normal in any way, at the end the nurse came in and we asked if the empty IV bag could be taken off, she told us we could take everything off because we were being discharged, Miss K started begging "take it off! take it off!", when the nurse and I weren't moving fast enough to get the wires and IV off of her she started to yell, very forcefully, "take it off! I don't like it! all done now!" and started to throw a small tantrum.  The doctor walked in on this and laughed, then looked at me and said "wow, I can see why you were worried hours ago, apparently she feels much better now!"  As soon as everything was taken off of her she looked up at me with the saddest face and said "I wanta my bampa" (translation in case you need it ;) "I want my Grandpa"), I said "what?  You want Grandpa?" and she said "Yes, I wanta my bampa now, I wanta the rock a baby bampa" ("Yes, I want my Grandpa now, I want to rock a baby with Grandpa"), the nurse smiled and asked if she was a Grandpa's girl and Miss K said "Yes, bampa girl", I promised her we were going to "Bampa's house" as soon as we were done.

The joy of having a heart baby on medications:  having to double, even triple check with the doctor that he made sure, without a doubt, that the antibiotic prescribed was OK with Propranolol and Digoxin and her specific condition and then having to double and triple check with the pharmacist filling the prescription to make sure he came up with the same information on the medications and the antibiotic.  They all looked at me like I was the best mom in the world though, complimented me on knowing what to ask and advocating for my child 100% :).

First lesson learned:  While taking Propranolol NEVER allow Miss K to go even a day without adequate food, no matter her state of mind, she MUST eat.  Low blood sugar is a side effect from Propranolol, not eating gives you low blood sugar, combine the two and you have lethargy, chronic tiredness, and slurred speech.

Second lesson learned:  Dehydration SUCKS!  Be 100% sure Miss K is drinking enough fluids throughout the day EVERY DAY!  And just to make sure, join her in the restroom at least twice a day to see that she really is peeing and not just sitting there desperately trying to no avail.

I feel like a horrible parent letting it go as far as it did.  But I have been able to make myself feel better knowing I took action ASAP and got her to an ER rather than waiting until Monday to see her doctor.

Today is Monday and Miss K is feeling, and acting, MUCH MUCH better.  She's almost herself again.  She's happy, she's playing, though maybe not as energetically as normal but still playing, she's eating more though still not much, but most important she is drinking tons and tons and peeing so we are likely to kick the infection quickly.

Here's to hoping we can avoid any more ER trips for any of our kids because the ER really, really sucks, not to mention the worry and stress and cost!  I really don't want to see the bill when it comes, can I just hide it away and never open it hoping it just goes away on it's own?  So much for wishful thinking ;) ;).

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 8-27-11

Sorry, I had to skip a day this time around. I took off Thursday evening and left Daddy here with Miss K and a good supply of frozen milk. I went to my parents house to have cake with Roo for his birthday then I took him home for the night and all day Friday. I don't take my laptop with me when I do this because I don't even want the temptation to be there when I'm trying to spend all the time I can with my little boy. It was a great day and night with him. He was getting very cranky being at my parents, he's decided it's time to be home, I don't blame him at all it really is time to be home. He's starting to freak out a bit when I try to leave him anywhere. Thursday evening he worried I was leaving without him, he kept a close eye on me and when I started gathering things to leave he cried and ran around trying to grab all his stuff as fast as he could to get to the door before I did. It broke my heart, I was so glad I was taking him with me so I didn't have to break his heart and leave him! He was so happy to be home with me! When we got there I asked him if he wanted to get in his bed and he said "Mommy's bed?", I didn't think he'd remember napping with me in our bed last Sunday, lol! Luckily I got him to sleep in his own bed and he slept all night just fine :o). Friday was kind of crazy with him, he was so cranky and easy to make mad! But I enjoyed my time with him and I know he enjoyed it as well. I miss him so much and can't wait to be home as a family again!

Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.

Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.

Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.

The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.

The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.

I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.

Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.

Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.

8-27-11 A New Report:

Whew! What a long day! We hopped for boring as usual but got a little bit of excitement thrown in :o(.

We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).

Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.

The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!

Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.

So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!

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!

Bad News

Our first day home with Miss K was great, we took her to see her pediatrician for the first time (I deliver my babies out of town so we use an on-call pediatrician at birth and then take our babies to our regular pediatrician in our home town within days of bringing them home) she was doing great and still steadily gaining weight. We updated him on her birth story so he'd know what to be concerned about and what to watch for as she grows. Her heart was beating steady and normal every time we checked her and at her Doctor's check-up.

Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.

Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.

3 Days After Initial Hospital (NICU) Release 8-16-11:

Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.

When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.

It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.

The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.

Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.

We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.