Home 12-6-11 Miss K is 4 Months Old

Miss K saw the Neurologist today: The Doctor agreed with me, she's been on the same dose of Keppra since she was 2 weeks old and has gained almost 8 pounds since then. They usually up the dose according to weight to keep seizure activity under control but Miss K's hasn't ever been upped and she's NEVER had any seizure activity since that day in the hospital. The Doctor and I agree that we've pretty much been giving her water these past few months and she wasn't having seizures and isn't going to have any. She's perfect in the neurology department :o). She passed every neurological test the Doctor did on her and we're going to skip the MRI because she doesn't need it :o). Miss K is no longer on the Keppra, as of today we've been told by the Doctor to stop giving it to her :o).
Miss K also saw the Electro Physiologist today: The Doctor says she looks great. Apparently her EKG showed her QT intervals are kind of long compared to what they should be but he's not worried yet, he's just not going to up the dosage on her medications right now, which he's happy not to do since she hasn't had any episodes of SVT since he last upped the dose. So the plan is to keep her where she's at on her medications and go back to see the Doctor in two months when he'll take her off the Amiodarone and we'll see what she does without it.  She'll most likely stay on the Propanolol until her first birthday, possibly longer.  He has opted to skip setting up an Ophthalmologist appointment as long as we get her off the Amiodarone at 6 months and keep her off of it.

We're so happy to be seeing so much progress here! And very glad to have one less medication to worry about daily :o), not to mention one less medical problem to worry about :o).
Miss K now weighs 13 pounds 5 ounces and is 23 1/2 inches long.  She's taking 1.5 ML Propanolol every 8 hours and 6 ML Amiodarone once daily.  We are still SVT free!  And her blood tests are still coming back perfect (See Side Effects).

Home 11-8-11 Miss K is 3 Months Old

Miss K has been doing great. Her heart rate has stayed at a steady, normal pace for over a month now without any episodes of SVT. She really hates her medications though. 

Since the day Miss K was officially put on the oral versions of Propanolol, Amiodarone and Keppra we have had to deal with getting her to take them without a problem, yeah right!

In the beginning we could put the syringes in the back of her mouth and just dribble the medications down her throat. The only issue we had was the Propanolol which is very strong and nasty tasting, she would choke on it and gag which would inevitably put her into SVT.

We started trying a MediBottle to administer her medications. At first it was extremely easy, she took the medications like milk, especially the Amiodarone. Frustrating enough this only lasted about a month though. At 3 months old Miss K decided she wouldn't suck on anything synthetic, except teething rings that is. No Pacifier, no Bottle and especially no MediBottle.

We tried putting the syringe in the back corner of her cheek like the Pharmacist suggested but our cute baby girl learned how to roll it forward and out of her mouth very quickly.

She also started vomiting while we were administering her medications thus forcing us to start over on the dose and try again. Not to mention the need to change her wet and soiled clothes as well as mine each time.

I finally discovered we could buy flavored syrup from the pharmacy. This has proven to be a great idea, she now takes the medications with a lot less gagging. But she still tries to spit it out.

The best technique we've found is to hold her with your hand supporting her neck. We tip her head way back and squeeze a small amount of the medication into her cheek at a time (about 0.5 ML each squirt). Then we hold her tilted back so she can't spit it out as easily, the medication is forced to stay at the back of her mouth. For some reason if she starts to gag we are able to stop her from vomiting about 60% of the time by squeezing her cheeks together (causing her mouth to make fishy lips) a few times, somehow this makes her forget what she was going to do and she ends up swallowing instead. Lately we've had a lot less stress giving her the medications by practicing this technique as well as flavoring the medications with the syrup.

Home 9-21-11

Miss K had her first appointment with her Electro Physiologist Yesterday. He told me Miss K has PJRT: Permanent (or persistent) junctional reciprocating tachycardia, a type of SVT that's harder to treat :o(. She's now wearing a Holter Monitor until this afternoon. The Doctor wasn't happy about how often she's still going into SVT but is OK with it because we can get her out of it as long as she's not staying in it for more than a few minutes.

The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.

The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.

There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.

Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!

Home: 2 Weeks After Release From PCMC

We've almost been home two weeks and I have to say it's been a very long 2 weeks.

Miss K is doing great, we had a two day stretch this week that kind of worried us though. She started going into SVT more often, not going more than 10-12 hours between episodes sometimes less, and she started getting harder to convert out of it, twice we actually had to use the ice pack on her face (See Physical Maneuvers). But she's done really great otherwise. We're not sure why she was going into it so often out of the blue but we are sure she was hard to get out of it because she has allergies, just like the rest of us, and has had a slightly congested nose. I think the congestion was preventing her from taking a deep enough breath to come out of the SVT. She is awake and alert a lot more often, smiling more and more, and very strong, she can hold her head up very well and for long periods of time. She has such a cute little personality :o).

Home 9-6-11

Miss K is doing great, she's being a normal eat, sleep and poop newborn baby :o). We check her heart rate daily with a stethoscope, every diaper change and/or feeding. So far since we got home she's had 5 SVT episodes that we've caught and I've been able to get her out of it very easily by blowing in her face (See Physical Maneuvers). She's cute as can be and growing like a weed! She hates getting up to eat at 12:00am or 1:00am, if I didn't have to wake her up to give her Propanolol she'd probably sleep through the night, she's really cranky about getting up and will only eat for a few minutes before she's out again. She loves to get up at 4:00am or 5:00am to eat, this happens to be MY least favorite, she loves to be up and bright eyed ready to play after eating very well. She has quite a few awake and active moments throughout the day and they are usually for very long periods of time. She's trying to adjust to home life. It's tough having a big brother who needs attention as well after having Mommy all to herself for 3 weeks. She's going to keep us busy for a while, we have her well baby check tomorrow morning, an appointment with her assigned cardiologist Thursday morning, an appointment with the Electro Physiology clinic next week and upcoming appointments with Neurology and getting a sedated MRI done in the next few months with multiple Cardiology appointments spread out through the next 6 months or so.

Primary Children's Medical Center 9-1-11

This morning everyone has been trying to be really encouraging. They keep making it sound like we'll be released today. I'm not getting my hopes up, I refuse to be disappointed like yesterday. I haven't seen the Cardiology team yet today, it'll probably be a few more hours yet. My guess is they'll send us home tomorrow. Today's nurse told me they usually won't send SVT babies home until they have had absolutely no episodes for at least 48 hours, Miss K almost did that 2 days ago but now we're a little far from hitting that goal. I've been told they'll be sending Miss K home with a Holter Monitor. We'll find out how long she'll need to wear it when the team comes by.

Miss K is doing well, she's growing like a weed. Daddy hadn't seen her since Sunday when they came over yesterday for a visit. His first reaction was "is she getting fat?", lol! Yes, she is getting fat, she's gaining weight like crazy. As of Saturday she weighed 6 pounds 6 ounces, yesterday she weighed 7 pounds 3 ounces :o), I laughed because at 3 1/2 weeks old she's finally hit her big brother's birth weight, lol! She's definitely longer and she's much more alert for longer periods of time. It's fun to watch her just lay there and wiggle and look around exploring her world. It sucks that she has to do this in a hospital bassinet and not on a blanket on the floor. She hasn't gotten any tummy time in because it's nearly impossible here :o(. But we'll catch up when we get home :o).

Yesterday was nice, it ended up being better than I thought it would be. When I called Daddy to tell him we weren't coming home he immediately packed Roo up and drove down here to be with us.  It was a nuthouse in this room but I LOVED it :o). When they left it was instantly very, very quiet, I didn't like it. I can't wait to be home in the crazy noise again :o).

So I'm going to keep hoping the news is good today :o). I'm not even thinking about going home today but I have high hopes that we'll leave here tomorrow :o). It would be nice to be home before Labor Day weekend starts so that we get Daddy home for 4 days with us before getting back to our normal life :o).

More updates in a few...I can hear the Cardiology team outside our door talking so there will be more to report very soon...

Well, it's official! We're going home TODAY! The discharge order has been placed, her prescriptions are being filled, and my mom is on her way to sit with Roo at home while Daddy comes down to get us, so now I'm really just waiting for our ride :o).

I am VERY nervous though. The SVT scares me. I hope and pray she's done having episodes now and we're through with it. But I kind of feel like we may have to deal with a few episodes at home occasionally. I'm not scared of getting her out of it, that's been quite simple with blowing in her face or using ice. But I am scared to death of her going into SVT and me not knowing it :o(. I'm going to be very paranoid. The Cardiology team teased me and told me we just needed to spoil her and not let her get upset or cry, lol! They know that's not really possible but they thought it was funny getting to tell a parent to spoil her child. I'm sure she'll be fine, but I'm still going to worry. It's going to be very hard not to hold her constantly and keep her calm indefinitely!

Roo will be very happy to have Mommy home.

I almost can't believe it's finally time, the Intern said that they don't usually send kids home who are still going into SVT but they feel like if they keep her longer she'll end up living here :o(, I hate hearing that, it scares me that we may end up coming back. But I feel with all my being that we're going home for good, we're done with staying in this place :o).

Primary Children's Medical Center 8-31-11

Talk about disappointment...I've waited ALL morning for the Cardiology team to stop in and talk to me, I started to feel like it was either a really good thing they were taking their time, I thought maybe they were writing prescriptions out and getting ready for release, or that it was a really bad thing, I wondered if maybe they were thinking today wasn't the day...I was hopeful though...bad idea, I totally got my hopes dashed. And I cried, really cried for the first time in 2 weeks. I'm exhausted, I need a break. Miss K is a really good baby but she has moments just like any other baby where she just cries for no apparent reason and holding her and rocking and bouncing and changing her diaper and offering the binky, not feeding her because it's been less than an hour, don't work and she just screams and wiggles and is VERY hard to keep a hold of because she really is a wormy, squirmy baby. This doesn't bother me at home because I usually have help, or at least I know at the end of the day I'll have help, when Daddy is home. I can walk away and lock myself in my room, or go for a walk outside and Daddy will take care of the baby for a few minutes. I can't do that here. The nurses have 4 patients each and on this floor they ask that one adult family member stick around 24/7 to take care of the child, especially infants because the nurses don't have time to take care of them like they need. So I have to deal with everything...alone. I don't get any relief of any kind, I occasionally get to sneak away for one meal a day, but even then I'm gone less than 10 minutes and I almost always come back to find her screaming frantically in her room and nobody doing anything about it. It's frustrating :o(.

So the nurse came in about 1/2 hour ago and gave me the bad news, she had talked to the Doctors and they told her Miss K is not leaving today :o(. I hadn't seen the Doctors yet, I'm sure they were afraid of being the ones to break the bad news since they promised me yesterday that we were leaving here today, they left it up to the nurse to break the bad news. The cardiology team finally came in about 15 minutes after I was told the news, I think they were waiting for me to get it all out and be calm and collected again when they came in, I'm sure by now they are afraid of my reactions, none of them want to deal with my crying, lol!

Yesterday Miss K had a few SVT episodes, the team isn't concerned too much about that but they were concerned about the early morning one that lasted almost an hour before she came out of it on her own, after me blowing in her face multiple times without success and being iced multiple times without success. They didn't like that we had to get out the Adenosine and even think about using it. I agree, I would hate to leave here and end up coming right back, but it doesn't mean I'm taking the news that we have to stay well at all! The Cardiology team is upping her dose of both the Amiodarone and Propanolol and watching her to make sure it works. When I said "so we're going home tomorrow instead", they wouldn't confirm or deny it, they just said that there wasn't much time between giving her her new doses and tomorrow. In other words I think they mean they'll send her home Friday. They said they want to see her doing really great before they release her. I like being safe rather than sorry but I'm more than ready to just take what I'm getting and go home now.

It's so frustrating to hear that there were somewhere around 7 total SVT babies admitted here the week Miss K came in. It's even more frustrating to hear that a good amount of them went home within 24-48 hours all healthy and ready to go. It's yet even more frustrating to hear that the baby boy Miss K's age that was so very bad off while in SVT, whose SVT was threatening his life (unlike Miss K who's done awesome with it), went through all the same medications and doses as Miss K did except they pushed through them quickly and in less than 48 hours, getting him under control and officially out of SVT within 3 days, he left here 2 or 3 days ago having not gone into SVT in over 72 hours. I hate knowing that because the Doctors have taken their time with Miss K, they've taken over 2 weeks to get her on the right medications and doses and she's still going into SVT occasionally. Now we're doing another dose change...I can only pray this is the last one and we'll really be done for good in the next day or so.

I want to go home. I want to hold both my babies together. I want to be together as a family. I want to be in our routine and enjoying our days together. I want to watch my baby girl grow and change in her own home. I want to put clothes on her! Nothing we bought for her first few weeks home is going to fit by the time we get back, she's surely outgrown most of her cute little outfits she only wore once or not at all. I want to watch my baby boy grown and change, I've missed SO much these past few weeks, he's a very different child than he was when all this began, he's learned so many new things and changed so much without me. I just want all this to be over.

Primary Children's Medical Center 8-30-11

I just realized Miss K turned 3 weeks old yesterday, time has really flown! I can't believe we've spent that whole 3 weeks in the hospital, it doesn't even feel like we had those few short days at home, I can barely remember them :o(.

Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.

The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!

At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.

I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).

I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!

Primary Children's Medical Center 8-29-11

I had a huge info. overload this morning when a new Cardiologist came by to talk to me and see Miss K. Nobody really had informed us completely about what Miss K really has, all we've been told is she has SVT, hers is very stubborn, they didn't think anything in particular was causing it, and they thought she should outgrow it by her first birthday. Pretty basic. Today the new Cardiologist let me in on what's really going on with her. I just spent the last hour researching what he told me and looking into what we should expect.

So here's what's going on! She actually has a form of SVT called AVNRT. In laman's terms it means she has an extra circuit in her heart that is a slow pathway where her blood is being pushed through. They don't think she's going to outgrow it because it's been so stubborn to treat thus far. They're already planning to have her in the operating room after she turns 5 if she can wait that long, they will be doing a Catheter Ablation. In laman's terms they will be placing several flexible catheters into one of Miss K's main veins forcing them up towards her heart where they will use electrical impulses to induce the arrhythmia, and then ablate (destroy) the abnormal tissue that is causing it. They don't like to leave infants on Amiodarone for more than 3 months because it's highly toxic (yikes!) so when Miss K turns 3 months they will be taking her off of it and putting her on Flecainide. Then they get to hope the new drug works and will hold her off for a while. By the age of one she shouldn't need drugs, she should be OK and not be going into SVT but they're sure it will most likely come back by her 5th birthday, thus the reason for the Catheter Ablation plans.

But on a light note, Miss K is doing great, we've now officially gone 24 hours straight without SVT, YAY!

We are officially upstairs on the 3rd floor in regular care :o). We got moved from our first room to a new room this morning because they needed the room we were in for another patient so now the room we're in is tons bigger and has a bed and it's own bathroom and shower in it :o). Here's to better sleep the next few days and better Hygeine I hope!

We are bringing her Amiodarone dose down from 2 times a day to 1 time a day starting tomorrow. They will observe her on one dose until Wednesday evening or Thursday sometime and make sure she's OK with it then they'll release her!

So for sure there is light at the end of this tunnel, lol! She's doing great and we'll be going home, we actually have a day in mind now :o).


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 8-25-11

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 8-20-11

Miss K seems to be doing much better. She has been kept on the same dose of her Amiodarone for almost 24 hours now. Through the night she quit going into SVT while eating, YAY! But she started going into it whenever she wakes up from sleeping :o(. The good thing is when she does go into it she gets out of it within seconds or mere minutes every time. We had a pretty OK night, long and uncomfortable sleeping in recliners and chair beds but uninterrupted by anyone besides Miss K herself for feedings. Daddy sleeps like the dead all night, I wake up at every beeping and every time Miss K grunts and cries out. I started out with Miss K in her bassinet sleeping but after the first night feeding I moved her into my arms and just slept with her through the rest of the night, we had an awesome nurse who'd come in when Miss K would cry out, she'd take her from me and change her diaper then give her back for her feeding. I know I've only gotten a total of maybe 12 hours sleep this whole week, it's starting to wear on me but even napping during the day isn't helping. It's going to take weeks to catch up with my lost sleep.

The Cardiologist came in to visit this morning. It wasn't news we wanted to hear but it wasn't bad news either. Miss K is doing great like we hoped, though they don't want her going into SVT at all and she's still doing it occasionally. So the new agenda is to put her back on Propanalol as an extra help with her SVT, they're hoping it will help keep her out of it. The schedule goes as follows:

We've now been on the Amiodarone drip for over 12 hours at the same dose, which was the goal.

The old goal was to wean her from the Amiodarone drip onto the oral Amiodarone after the 12 hour mark of being on the same dose and doing good. The new goal is to stay on the Amiodarone drip and add the Propanalol until she's had 5 doses of Propanalol, each dose administered every 8 hours.

If she's doing good with this and not going into SVT any more then they'll wean her off the Amiodarone drip slowly through 2 doses of the oral Amiodarone. If she's still doing good then they'll take her off the IV and move us to regular care upstairs. They will have to monitor her on the Amiodarone and Propanalol for at least 48 hours, if she's doing GREAT then they'll send us home.

So we're now looking at going home no earlier than next Wednesday. I'm hoping we're not still here on Thursday :o(, it's little Roo's birthday on Thursday and I'd feel awful if we're not home with him by then. The poor little guy has already been through enough separation, but to have to be without us on his birthday would really be tough. I'm not making any plans thus far though, other than to cancel his birthday party I planned and already invited close family to, I know even when we're home I won't be able to throw a party.

We had a flow of visitors yesterday afternoon. It was nice, a great distraction for us :o). Our firsts visitors were my mom and grandma with my little sister and my baby boy :o). I visited with my mom and grandma for a few minutes while I fed Miss K then I left them babysitting her and Daddy and I took Roo down to get some lunch and then out to play in the water fountain outside. It was some good quality time, made me happy but also made me miss him even more :o(. I got permission to take my sister back to see the baby :o), she enjoyed it, she even brought Miss K a tiny bracelet that she made and we put it on her for some accessories since she can't wear clothes :o). Daddy's Aunt and cousin showed up as well and they got to say "hi" to Miss K for a minute.  After everyone left and it all calmed down we got a call on our room phone asking if we knew some visitors waiting outside to come in, turns out it was my visiting teacher and her hubby :o), we had a good visit with them and about 10 minutes after they came the LDS representative couple showed up to see if Miss K could use a blessing, we of course said "yes" and had the rep. and my visiting teacher's hubby give her a blessing, it was nice and helped us feel better :o).  Around 9:30 we had a surprise visit from our buddy who lives upstairs above us, he hung out until visiting hours were over at 10:00.
Daddy got me out of the hospital last night, he insisted we leave for dinner. Since they kick all parents and visitors out between 7:00 and 8:00pm it seemed like a good time to take off for a minute since they wouldn't let us be with Miss K anyway. We went out to Ruby River, it was a nice meal without kids :o) and it definitely felt good to get out of here for a minute.

My Heritage Makers team is getting me out of the hospital tonight. It's our annual reunion this weekend, I already wasn't going to get to go because I was having a baby but at the time I realized this I was going to be home with a new baby and my little family. Thursday I realized I am literally 2 minutes away from the Reunion location. Talk about frustrating! I wanted to go so bad and have been so disappointed that I was going to have to miss it this year. I got a Facebook message last night from one of my HM team members asking if I could sneak away last night at 5pm for team dinner, sadly I didn't get the message until almost 6pm :o(. Today I got a text message from my director asking if I could sneak away this evening for the banquet, she had talked to the HM president and told her my situation and the president was so awesome, she told my director she could dig up a ticket for me to come join them :o). So tonight I'm going to try to make myself as presentable as possible and I'm hanging out with my HM gang for a little bit :o). We got Miss K to take a bottle yesterday from Daddy without any fuss so I'm not worried about her getting fed, Daddy will stick around and feed her while I'm away :o). I'm excited, I can't wait to go.

A few things I miss: (I may think of more later, lol!)

My son
My bed
My bathroom
My shower
Decent toilet paper
My home
Home cooked food
Snuggling with my Hubby