Robynson's Heart

Because she's awesome....

2011-10-09T17:19:00.000-07:00

Robyn, 1st day of Preschool

I tend to forget to post sometimes because, well, she's basically just awesome! :)

We had a follow up doctors appointment @ the end of September to check out everything since Robyn's been off her meds since April. After an Echo and meeting with the doctor, Robyn is, like we knew she would be, just perfect!

Her doctor came in and checked her out again after looking at the Echo Results and just said that she is what she would call "Recovered". Robyn's heart looks completely normal. She looks and acts like a completely normal, healthy, crazy almost 4 year old girl.

Her doctor said no further testing or meds were necessary and that she'd just like to see her again in 3 years, just to still make sure that her heart is growing / acting normal.

CUZ SHE'S A ROCKSTAR!!!

So, this blog is basically on the back burner unless our little girl gets a sick again or starts acting calm... Both of which I hope never happen. :)

Love you all! Thanks for your continued love and support of our little family. :)

2 Year Anniversary :)

2011-07-31T22:42:00.000-07:00

Because today is a day that will probably always be a "scary" day in my mind, I thought I would do a post...

2 years ago, I took little 20-months-old Robynson in for what I thought was a cold or flu or possibly (worst case) pneumonia. And I was wrong. That wasn't the worst case... Heart Failure and 'oh, we're life-flighting her because she's so sick she might actually DIE if we take her by ambulance' is a lot worse...

(with the portable heart monitor on)

Today, Robyn is a hyper active (more so than most, actually) little go-getter. If she wants something, you better look out - she is going to get it. She has a spunk that rivals any kid I've ever met. She has a smile that charms both of her Grandpa's (and even her Dad, but he won't admit it). Somedays she acts like a girl, but most days she acts like her brothers.

Robyn went off all of her heart medicines in April 2011 and she hasn't needed them since. At her last appointment, the doctor was "thrilled" with her progress... We don't have another appointment until the end of September this year... And, I'm happy to report, I believe we have almost completely paid off all of her medical bills!!!

Robyn is very active and healthy. She hasn't been slowed down one bit by any of this. She jumps on the trampoline or swims in the pool or plays in the dirt, right along side her brothers and friends. She dances and sings at the top of her lungs. Such a joy to us all.

We are, as always, very humbled and thankful to all of the support we have gotten from our friends, neighbors, family and church. We don't know how we would have gotten through that first while without you.

OH, any Primary Children's Hospital Staff --
WE LOVE YOU!!!

Love,

Robynson and Family

Heart Update!!!

2011-02-13T14:35:00.000-08:00

Robyn sporting her new shorter hair...
that she started to cut herself.

Remember how long, long ago (well, maybe not too long ago) the doctors told us that Robyn could be in one of the 30% groups or the evil 10 percent? Let me refresh you -

KIDS WITH HER HEART CONDITION:
30% get better and won't even need meds
30% will probably need meds but can still live a basically normal life
30% will need a heart transplant
10% die

SO, we've been in the 2nd 30% group and we've been totally fine with that because, well, she's okay and lives a basically normal life. BUT, guess what???

We're going off the meds!!!
YAY!!!!

Because Robyn's been growing and her heart looks completely 100% normal for someone her age / size, we have been given the go-ahead to start weaning her off her remaining medicines! SO, in about 8 weeks, we should no longer have a need for twice a day medication. And if she seems fine still at her next heart appointment (in another 6 months), we are in the clear! We'll only have to check back once a year (if that!) So here's to positive thinking, relying on the Lord and extra prayers (and medicine!)

LOTS of love and thanks to you all!

Pictures from this morning

2010-08-03T10:15:00.000-07:00

My little monkey woke up this morning and wanted to put on her Dora panties with her new 'stickers' that she gets to wear. :) I thought I would take that opportunity to show you all the portable heart monitor. Not to mention her curly bed head hair and her cute Dora panties! :)

Much love. :)

She's a Rockstar :)

2010-08-02T18:48:00.001-07:00

I was having quite the emotional day (and did an emotional post) on Saturday (7/31) because it was exactly one year to the date of when they took my baby by life flight and I couldn't go with her. I just watched her leave - not knowing what was going to happen. After a super scary week in the PICU (Pediatric Intensive Care Unit), a couple of freak-out breakdowns by me, lots of prayers and lots of loving care - she came home. My little girl will now be known as a person with a 'heart condition'. But you wouldn't know it by watching her, looking at her, knowing her.

Robyn is a super active, very smart, great talking, spunky little 2 year old girl. She likes ants and bugs, Mickey Mouse, Dora the Explorer, her Daddy, her brothers, swimming, running, jumping, chasing and hitting. She's a boy in a little girl's body. :) Though, sometimes, you see that she's a girl. She'll carry around a baby, a purse and talk baby talk to & want to hold babies. We are SO truly blessed to have this strong little angel in our lives.

So today was Robyn's "Official One-Year-Later Checkup" with her Pediatric Cardiologist. She started her appointment with a limited echo cardiogram. The guy who did it couldn't have been any nicer to her / us. He was being silly with her and talking like Blue from Blues Clues while she watched the movie. I kept watching the screen and her little heart beat. I was a little freaked out by the blue and the red with the occasional yellow/green colors on the screen. But it was also kind of cool to see the little flaps opening and closing - moving SO quickly. Soon that was over - before Blues Clues was, even - and we headed to our Clinic room to meet with her doctor.

Dr. Everett was looking at her charts and the new notes. She said that Robyn is a total little Rockstar and that she looks completely healthy. So much so that if you didn't know her history, you would think that she was a totally healthy, completely normal little girl. Her heart looks how it should for her age. :) Robyn is healthy. Robyn is normal. :)

We will keep her on her current meds for now. And that's okay. They also wanted to do another portable heart monitor for 24 hours - just to make sure everything looks okay during the day / night when she's NOT on the table in the Echo room. I'm not worried. We've done that before and everything was fine - as I'm sure it will be this time. Robyn doesn't have to see the doctor again for another 6 months. I can do that. I'm totally okay with no doctors visits til after she is 3 years old. My daughter is a Rockstar. And she is healthy and normal. :)

I have to say it again, and I hope you know how absolutely genuine it is every time I say it, but I am SO grateful for all of you. For all of your prayers. For all of your encouragement. For all of you love. Without it, we'd be lost. Thank you and we love you all VERY much!

Quick Update, with nothing really to update...

2010-07-26T20:30:00.000-07:00

Well, I called today to set up Robyn's next appointment (which is supposed to be 6 months after her last one). Six months would mean the end of August. When I called, the 'soonest' available appointment they have available with her doctor is November 5th. You know, 2 1/2 months AFTER when she is supposed to see the doctor. She is doing great. You'd never really know that she was a heart condition child. She acts completely healthy. So I'm not too worried, but we're less than one week out from the 'anniversary' of her heart problem being discovered. So I'm getting anxious. But she's fine. Here are a few pictures for you to enjoy, since I won't have any real updates, it seems, for a few months.

***UPDATE*** 07/27/10

So the Doctor got my message about trying to schedule an appointment sometime in August instead of NOVEMBER... And she told the scheduler to call me and get me in this coming Monday. SO, I should have an update next week... Again, I'm sure she's just fine.

Getting better!!!

2010-02-25T14:27:00.001-08:00

YAY! Today was another one of Robynson's heart doctor appointments and it was all good news. :) Here are the key points:

Mandy (me) had a panic attack or flu bug attack and couldn't be there in the appointment - again. Dang it! BUT Jeremiah was there and to Robyn, nothing is better than some one on one time with Dad. :)

Robyn was good for the Echo on her heart, the blood pressure checks and for all of the other checks by the doctor. She even got a little truck and a color book for being so good. :)

She was taken off 2 of her meds - Digoxin and her Furosemide. Now it's just 2 meds in the morning and the same 2 meds at night!

Robyn gained a little weight so her 2 major medicine doses were increase a little. The meds that were increased are the ones that help her heart function how it's supposed to. :)

Her EF is at 66%! :) (Nod your head - it's a good thing!)

We're so excited and happy for her improvements. :) The person doing the Echo explained everything to Jeremiah in detail - and he just LOVES that stuff. The doctor was great to explain to Jeremiah the ins and outs of her heart. But in essence - the more she improves, the less likely it is that she will have to have a heart transplant later in life. :)

Thank you all for your love for our family! :)

She's still doing great! :)

2010-02-05T15:38:00.001-08:00

Sorry I didn't post this earlier - life just gets busy!

Robynson had labs drawn in January to check her Carnitine levels (just nod your head, too confusing to explain). The blood work was sent to her Pediatric Cardiologist at Primary Children's for analysis. Long story short, she's just fine!

We are able to keep her off of the Levocarnitine med (most expensive, biggest dose twice daily med) and the baby aspirin for now! :) She still has 4 meds in the morning, with 2 of them repeated at night time. Generally she will take them without much of a fuss, but every once in a while she will flat out refuse or tease us with them.

Also, we heard back from Medicaid (finally!) Not great news - we were denied for her claims back when everything happened. But we are able to qualify for a Spend Down (which is when you make too much money so you have to pay to be on Medicaid). So for just over $11,400 - Robynson will be covered for the time she spent in Primary Children's. Much better than the $70+ thousand that it was originally, but it still sucks. Needless to say, we don't have the money and I don't see us having the money in the near future. We are trying to get ahold of our Medicaid case worker (which is rediculous) to find out if we can be on some sort of 10 year payment program. Yeah. We're sort of broke right now with Jeremiah being laid off and me not having a job. Luckily, that means we ARE on Medicaid right now!

Anyway, Robynson seems really healthy and happy. I'm starting to be more brave about taking her into public type places (she's gone to church like 3 times since getting out of the hospital). I'm allowing friends to come over even if their kids have a cold. Baby steps, people. Baby steps. Robyn has gone to the Insta-Care down here twice in the last few months because I'm not taking any chances when she gets sick.

Once again, I can not thank people enough for the showing of love and support and just everything from those around us. :) It's wonderful to know that people out there really do care and want to help. Robynson's next appointment isn't until the end of this month (25th) so I will post again then.

Much Love! :)

Another Update / Doctor Visit

2009-12-03T11:39:00.000-08:00

I haven't posted for a while, which generally means something good! :) Or that I'm busy. In this case, it means both. :)

Robynson has been being pretty good / normal for herself. We've been doing as much as we can to keep her away from sick friends / family. We've avoided most social situations to avoid the random kid who is there who happens to either be sick or a carrier for something that would bring her down and land her at a holiday stay in the hospital.

She has gotten a light flu and strep throat since I posted last. Luckily, the strep throat seemed to be caught early on and she is currently on meds for that. The flu was really light for her and didn't seem to affect her breathing or anything like that so we have been REALLY lucky!

Robyn had a doctor appointment yesterday morning and wouldn't you know it - I was sick. I got sick on the way to the appointment, so instead of going along to see everything first hand, I slept on Jeremiah's sisters couch while Jeremiah got to be there and comfort her and be her buddy. I think they both sort of liked it that way. :)

Jeremiah reported that the doctor told him that Robynson is doing great. They was very pleased to see the progress that her little heart was making. So pleased, in fact, that Robyn was taken off of Levocarnitine (which was the most expensive, biggest dose, twice a day medicine) and she was also taken off of her baby aspirin. Which means we are now down to 4 meds in the morning and 2 at night (well, plus her amoxicilian for strep throat, but that won't be very much longer now). Jeremiah didn't ask about her EF for her heart, but the doctor seemed really happy about the results, so we take it as she's getting better. :) YAY!!!

Robyn needs to go in for labs in about a month to see how her blood is without the Levocarnitine, but if she still looks good, she won't have an appointment until FEBRUARY!!!! Hooray! So, in the mean time, just remember that God is great, Love your neighbor and Life is Good. :)

PS. I will be doing a post over at the family blog (www.mandyandmiah.blogspot.com) about her birthday in the next few days hopefully... Its just been REALLY busy these last few weeks and when I did have time to do it, I couldn't find the cord to download the pictures to the computer. But it was lots of fun. :) Loves!

More coming tomorrow

2009-12-02T22:06:00.000-08:00

Robyn had a Dr appointment today, but I'm too tired to write about it. SO know that it was good and I'll write tomorrow. :)

Doctor's Appointment

2009-10-16T08:32:00.000-07:00

Yesterday Robynson had another doctor's appointment complete with an Echo and blood work. Poor little thing!

We started out the day at Grandma Barlow's house in Heber because it's closer than Provo and because I know the way to the hospital better from that direction. Jeremiah couldn't come with us this time because he needs to work when he can - since he's probably getting laid off today (yeah, I know, WONDERFUL)...

We got to the hospital a little early and met with the nurse. Robyn had her vitals taken. She's normal on her blood pressure and her weight is up a little (and by little, I mean 0.1 kg). :) Then we were off to the Echo. The Echo took longer than normal (about 45 minutes!) because they saw something that was unusual. When I asked about it after they RE-checked her, the Ultrasound Tech said that it was just the angle and the Robynson is still fine (well, fine for her). Nothing new to worry about, I guess! :)

After her Echo, we met with her doctor (Doctor Everett). She said that Robyn's numbers were a little down, but that her heart looked more like it should (which is good). She said that she didn't want us to think that she's better, but that she is, in fact, slowly getting better. We're not out of the woods on this but that the medicines seem to be helping her heart to go back to the right shape (instead of a balloon, she starting to look more like a pear, which is good). Dr. Everett said that she was pleased with how it was going - even though she'd like it to go faster! :) (Yeah, us too!)

Dr. Everett wanted to monitor Robyn's heart during her 'normal' daily routine. So, Robyn has a portable heart monitor (called a Holter ECG) on for a total of 24 hours. I was worried that she would be picking at the 'stickers' and pulling out the wires, but she's barely noticed it (which has been awesome!) I've kept her in a onsie and the only time she really seemed to notice it was when I changed her onsie this morning and took pictures (see below). :) Anyway, back to the visit...

Then we met with the Cardiology Department's Social Worker (who was really great). She helped me to get the information I need to apply for Hospital Financial Aid, talked about other options, helped me with asking the right questions to my Medicaid worker, etc. So, I ran around the hospital with her trying to get all of that done before we did Robyn's lab work.

Robynson hates lab work (I really don't blame her at all - I don't like needles and blood and all that either)... So when we went in the rooms and sat in the 'special chair', she seemed to recognize it because she started crying. They put the blue band on her arm and looked at her viens... They tried her right arm first (and by THEY I mean the girl doing it had to call in another person because even with me and the lady with the needle, we couldn't hold Robyn still enough to get the needle in!) So with 3 of us holding Robyn, we finally got the needle in and the blood drawn from her LEFT arm. She cried until she was so exhausted that she couldn't stay awake and fell asleep while I finished the visit... Poor thing. I hate that part the most (and so does she). That's when I really wish that Jeremiah could have came with us.

After labs, we ran back to the Cardiology desk to schedule her next appointment. Dr. Everett said that she was doing well enough that she wouldn't need to come back for 2 months! But the next available appointment CLOSE to that date was December 2nd. :) I told Dr. Everett that Robyn had labs done after the Holter ECG was put on, so that it will probably show signs of stress. She said to make sure that I make a note of it in Robyn's "activity journal" so that they know what happened to make her heart freak out. :)

We grabbed some baby asprin, met with our Medicaid Case Worker, grabbed even MORE paperwork and headed back to Heber to pick up the brothers.

All in all, it was a LONG appointment - with no Jeremiah - that went relatively well until labs. She seems to be doing well enough and her medicines don't need to be adjusted yet. We have our next appointment on December 2nd, but until then we just need to all find somewhere and get our flu shots; avoid sick people (so don't come over if you or anyone in your family is sick) and keep washing all our toys as often as we can. If you come over to our house, please know that I am the Hand Washing Nazi! Don't take it personal! :)

As always, thank you all SO MUCH for your love, thoughts and prayers. I am so appreciative to have such wonderful people in my life and in the lives of my family. Bless you all.

I think I'm going to be sick...

2009-10-08T09:15:00.000-07:00

Around two weeks ago, I received a letter saying that we didn't get everything in on time and that we have been denied for Medicaid. My heart sunk.

Since then, I have been calling pretty much daily. Doing the run around (press 1 for English, Press 4 for Medicaid, Press 15 million for an actual person who told you that you need someone else)... I have been able to leave messages for our case worker after going through the run around. MANY messages have been left. To what result? 2 new letters, no calls back.

Today I called in the morning and by some miracle, I actually got our case worker on the phone. I got to ask my many questions - we're talking 15 minute phone call of me talking and asking questions. I can feel my heart break, feel my eyes gather tears and resolve that I'll move forward and get through this, too - all while on the phone.

Jeremiah and I had decided that Robyn is living a normal life. That she is your normal everyday almost 2 year old girl. So, Disability Medicaid isn't really necessary. We haven't filled out that paperwork and we feel like she'll be okay. Now, it's our only hope to have $70,000+ in medical bills paid and make it NOT a pre-existing condition... My gut feeling is that it's not going to be approved because, honestly, I feel like she is your normal everyday almost 2 year old little girl. She's not living a disabled or abnormal life RIGHT NOW. She seems normal other than she spends a day or two at the doctor's office each month. That doesn't mean that someday in the future (like if we can't afford medicine or hospital visits or a heart transplant, if it comes to that) that she won't need Disability Medicaid.

We didn't want to 'take advantage of the system'. We didn't want ask for handouts that we didn't feel like we needed. And now, it's our only option that won't kill our family financially. I am all about paying back people. Payment plans are great! But when you are already struggling financially and on payment plans in every other aspect of your life, to be on payment plans for $70,000+ in addition to everything else? We would be in ruins.

So, I am moving forward. WE are moving forward. We will apply for Disability Medicaid. I will apply for every other financial assistance that Primary Children's Hospital has to offer. We will make it through this. We will survive...

Doctor's Visit

2009-09-15T17:34:00.000-07:00

Today's visit to Primary Children's went pretty well!

Robyn's weight is back to where it was when she was admitted there a month and 1/2 ago. Her Carvedilol dosage is as high as it will get. Her heart ejection fraction is at 36%. So, she is improving. Not as quickly as they had hoped, but it IS continuing to improve. :) She's still on 5 meds in the morning and 3 at night with an added med of 1/2 a baby aspirin each day.

She still acts like pre-hospital Robyn, so they said that we'll just continue on the same path we are on for the next month. Since her heart medicine is as high as they can go for her weight / age, there won't be an adjustment appointment. Just another check up in one month!

As always, thank you for your kind words, love and support.

Hello from Robynson!

2009-09-01T17:34:00.000-07:00

If you don't already know, I have a calling in Primary. I have the Primary song "Hello, Hello, Hello, Hello - we welcome you today" as a ring tone for people I know thru church (which is basically everyone in Provo). :) Also, my kids and I will go around the house singing it - changing the words to 'Clean up, Clean Up..." or "Thank You, Thank you..." or "Hungry, Feed Me..."

Anyway, so Robynson has picked up on that. It's her favorite thing to sing, dance to, listen to on the radio or my phone. Today, I was able to catch it on camera and thought I would share it with all of you to prove that she seems fine...

SEE?!!!

She really doesn't act / look sick! :)

Thank you for all of your love, prayers and support! :)
(If you are emailed this, you have to go to her site to view it... robynhardman.blogspot.com)

Hospital Pictures

2009-09-01T16:04:00.000-07:00

I finally downloaded some pictures from my actual camera today. There were still pictures of Robynson from when she was in the hospital. I thought I would share them here.... I posted some that were from my camera phone on our family site, but none really here...

AT UVRMC,
BEFORE LIFE FLIGHT

LIFE FLIGHT

PICU FLOOR,
PRIMARY CHILDREN'S HOSPITAL

OFF THE PICU FLOOR!,
PRIMARY CHILDREN'S HOSPITAL

GOING HOME

People have been great to us. Everyone asks how she is. Everyone offers help. I can't express my love, appreciation and relief it has been to know that people out there care for us and want to help in any way possible... :) We love you all...

Follow Up Visit, #2

2009-08-28T16:50:00.000-07:00

Well, today's visit is what we call a "short" visit. It only lasted 2 1/2 hours instead of 5+ hours.

My Aunt Melissa, Uncle Wes and cousin Reanna took on the boys over night and to school in the morning (thank you thank you thank you). Jeremiah got to come home and work on the basement til past 10:30pm then go to work at 5:30am like normal. And I got to spend the night in SLC with Robynson at (Jeremiah's sister) Jessica and Draysen's house.

Robyn's appt was for 'between 8am-8:30am'. I got there at 8:45am because I got lost in Salt Lake. Yeah, fun. We met with our doctor (NP, actually) Michelle Cardon. She listened to Robyn, checked her out, had her weighed - all that good stuff. Robyn was FANTASTIC for all of it. :) Then we doubled her dosage of Carvedilol (which was and is the plan for the next few visits, actually). After we double her dose, Robyn has to be monitored for 2 hours - which is why the appt is so long... We enjoyed the two hours by playing in the waiting rooms, eating in the caffeteria, visiting the Gift Shop, jumping on the 'fishy' squares, and having complete strangers say how cute she is. :) Every half of an hour, we had to go back to the Cardiology department have have her blood pressure taken.

Her blood pressure was kinda low for her but still normal-ish for her age. They felt it was okay enough for her to leave with the higher dosage of medicine. Also, she has lost weigh since her last visit (and apparently since we checked in at the hospital a month ago). So we have to monitor her diet and give her MORE calories and FATTENING foods! :) She'll love that. Can we say Cookies, Pizza, Spagettios and Mac and Cheese? :) And we have to write down what she eats for at least 3 days in a row. Gotta meet with a Dietician at our next visit now too. :)

I'm a little paranoid after this visit. You ever have one of those 'impending doom' feelings? I sort of have one of those. I'm sure it's just me being my overly paranoid self... We'll continue to watch her for sweating, rapid breathing and lethargy. If those things start happening, we'll be back in SLC. I'm not taking any chances!

So what's she doing right now? Running around the house with her 2nd piece of pizza chasing her brothers and her little boyfriends, the Hartley boys. Yep. Such a sick little girl... :)

Her next appointment is September 15th. It's an Echo, Dietician, Medicine Increase, Etc. I'll keep you informed after that visit and if anything else goes on between now and then. :)

Love to you all.
Thanks for your Love and Prayers.

Flu Bug

2009-08-25T20:16:00.000-07:00

There is a Flu Bug at our house...

...I had said this on the phone earlier and Archer asked me where the bug was and if I was going to kill it. :)

So DarTanion woke up Sunday morning around 3am-ish throwing up. He was sick until he had nothing left in his stomach. Then he went back to sleep and slept it off. I didn't think anything else of it. Last night / this morning (12:30am), Robynson started screaming. Jeremiah went in to check on her and sure enough, she had thrown up. This is generally what happens at our house. If one of us gets sick, it goes thru the rest of us and then we're fine. Well, having a baby with a 'heart problem' makes you a little more paranoid about that darn little Flu Bug...

Robynson was throwing up from 12:30am til close to 6:30am. At first it was every 15 minutes, then it went to 30 minutes. I think the longest in between was around 45 minutes. I sat up with her on the couch and she would always cough / cry because she knew it was coming. That was my warning that I had approx. 2 seconds to get her bent over the trash can... It was so sad! She just wanted a drink, so I would give her water / gaterade / sprite... Shortly after, it was in the trash can. I stayed awake most of the time with her - just watching her breathe. She stayed normal the whole time. Nothing out of the ordinary. But I just had to make sure. She kept her medicine down this morning and slept a lot this afternoon (but so did I - I mean, we were up all night!) She's been going to the bathroom pretty much normal, so I guess no need to panic...

But, I guess now that whenever she gets sick with a cold or a flu bug or whatever, I'm going to be overly paranoid... I didn't call the hospital, but I was going to. I didn't drive her to PCMC, but I was thinking about it all night. It's amazing how you can stay awake all night out of worry and just watch someone breathe...

Archer was great to play trains, watch tv and play X-Box while DarTanion was at school today. Robyn and I tried to catch up on our missed sleep... We took a couple of naps during the day and she's acted completely fine the rest of the day...

I wanted to post this - you know, just in case the doctors need to know - so that I could remember things. In the mean time, here is a video of her running around the train at Primary Children's while we waited for her medicine... (taken with my camera phone, so sorry for the quality...)

Next appointment is on Friday, August 28th...
Until then, much love to you all...

First Visit Since Leaving PCMC

2009-08-19T16:15:00.000-07:00

Today was Robynson's first appointment with the Cardiology department at Primary Children's Medical Center since we left there just over a week ago...

Her stats are improving. The ejection fraction of her heart went from functioning at 23% to 28%. It is a small improvement, but it is still an improvement. :) Also, we can cut 2 of her medicines down to just 1 dose a day (instead of 2), while 1 other medicine's dosage was doubled (and will be again probably at our next visit). The biggest improvement, however, was her attitude.

Instead of screaming the whole time so that no one could listen to her heart, she only screamed a little bit of the time. Instead of wiggling and screaming and pulling the "stickers" off the whole time they did the Echo, she only did it for a little bit. She then became distracted with the Imagination Movers (thank you, Disney!) And instead of crying hysterically when they checked her blood pressure, she barely noticed it. THANK YOU Nurses with bubbles!!!

Today we also met with and signed up for Medicaid. Still don't know if we'll be approved, but we're hoping so! Keep your fingers crossed and your prayers coming! :) We also might be able to / have to apply for Disability Medicaid for Robynson. We'll find out and if so, we're hoping to be approved!!!

Our next appointment is on August 28th. Until then...

We Love You!
Thank You!
Keep Her In Your Prayers!!!
(and don't come over if you're sick!) :)

Mia McDonald...

2009-08-18T14:19:00.000-07:00

I was playing on Facebook earlier today and found an event site. It was a bike-a-thon for a little girl with a heart problem. Since this is something close to my heart now, I decided to take a little closer look.

My heart sank when I recognized the mom of the little girl.

I wasn't friends with Mimi Jensen, but I knew her. She was from Wasatch High in the class below me. She was cute and (I think) a cheerleader. I remember that she was always really nice. Her older sister Susan was also super nice and a year older than me in school... Anyway, Mimi is this little girl with heart problems mom.

There was a blog about her ordeal set up by friends of her family. Mimi Jensen is now Mimi McDonald. She has 2 other kids older than baby Mia. Baby Mia has a different heart problem than my little Robynson. Baby Mia was born with a heart problem and lived at the hospital. She had to have a transplant. At 4 months old, she had a transplant. :) She just tuned a year old last month (it looks like she was born on my DarTanion's birthday!) She looks healthy. And happy and wonderful.

baby Mia on her 1st birthday...

I have now read most of the posts. I know that it's different than with my little Robynson. But it breaks my heart all over again. Their baby girl was in the hospital SO long. And her scar from the life saving surgery is SO big. And someone else had to lose a baby in order to save a baby...

I think the unknown is what scares me most about what COULD happen with Robyn. What if she gets so sick that she does have to live at the hospital? What if she needs a transplant? How would I handle knowing that some stranger did the most selfless thing possible and helped my baby to live? I don't think past a possible transplant...

I was in Robyn's room (which doubles as the computer room) sobing while I read their trials. We all have trials. We all have scary things we have to go through. And I feel like I am one of the lucky ones. I don't know yet how my little girl is 'officially' doing. But I feel like Robyn's okay and she's going to be okay.

Anyway, I just felt the need to post this... If you would like to read about baby Mia, you can go here:

http://helpbabymia.blogspot.com/

She still seems fine!

2009-08-15T09:20:00.000-07:00

Even though we don't have a doctors appointment until the 19th, people have been asking how Robynson is doing... SO, I figured I would do a quick post.

She's doing GREAT!!! She acts just like my little Robyn. :) She runs up and down the hall after her brothers. She eats like a little piggy. She demands her Mickey Mouse and Handy Manny cartoons. She has to wear specific shoes. She is taking her medicines with NO trouble at all! :) And she loves the extra attention she's getting. :)

2nd Day Home

4th Day Home

Thank you everyone for your love and prayers.

Just keep them coming as we keep trying to figure out what we can do to make her little heart work at 100%!!! :) LOVE YOU!

Love and Support

2009-08-08T10:04:00.000-07:00

I have to say something about all of the amazing people we have in our life.

OUR FAMILY

Our parents, brothers and sisters have been such an amazing support system. From staying with us at the hospital, visiting Robyn, bringing food, getting medicines, lending a laptop, holding Robyn, taking our boys, calling for updates, passing along information to everyone else - they have been wonderful. I am so grateful for my families - both the one I was born into and the one I married into. They are super wonderful, amazing, great people.

OUR EXTENDED FAMILY

Our Aunts, Uncles, Cousins, Grandparents and adopted families have also shown a lot of support. So many have offered to take the boys, come to the hospital to sit with Robyn, or anything else we might need. They have called to check on her, sent love thru email and texts, called to check on her and passed information around. Some have came to the hospital to visit little Robyn or just be there if we need them. Even brought Vending Machine money... :) So much love... So much support... I love these people.

FRIENDS, NEIGHBORS,
and STRANGERS

I am overwhelmed by the support we have had from our friends and neighbors. We have had so many calls, texts, emails, notes of love from those around us. It's so encouraging and wonderful. You never know how loved you are until something so horrible happens.

The Dome Family (our wonderful neighbors) has done SO much for us. They have watched the boys, gave Robyn a blessing, sat with us at the hospital, called for updates, and scheduled helpers. Which brings me to another part of overwhelming support... Because we weren't home and therefore couldn't use meals, they looked for another way to help. We have been working on finishing our basement for what seems like forever. After talking with my father-in-law, the Dome family called around our ward / neighborhood and explained our situation (daughter in hospital with heart problems, basement not getting done but NEEDS done so we can rent out upstairs to afford our house and now all the medical bills) and had people over pretty much every day we were gone working on our basement. I don't know if half the people even know who Jeremiah and I are. They just helped us because we needed help. To be good people. My house is clean, laundry is done, floors and bathroom scrubbed. My basement has new walls, mud and tape, insulation, back splashes installed. It's amazing. I like to think that I would help people if they needed it, but for these people to come over and do all that they have done and not even really knowing us - it's just a sign of true goodness and love and selflessness. I have no words to describe how much it means to me....

IN CONCLUSION...

I don't know that I knew how loved we were. I know how much I love and care for those around me, but to have such an outpouring of love and support from so many people - it's just amazing. I am so thankful and appreciative of the people in my life and my church. I'm also thankful for the people who are strong enough to work in a profession where they see sick people - especially kids - and show them them love, care for them, and heal them. I do not think that I am that strong, but I'm glad that some people are. Without them, I hate to think where I would be...

Please know that you all are loved.
That we will do anything we can to help any of you.
And that life is good.

Remainder of our Stay

2009-08-08T09:38:00.000-07:00

I'm typing this from home (YAY!) but I wanted to finish out our stay at Primary Children's here...

We were moved to the Surgical floor on Wednesday afternoon. That's also the day that Jeremiah decided to stay at our house for the night. He needed to get some things from home for work, wash some clothes, pay some bills and just get a few things done at home. Robyn and I made the trip up to the Surgical floor where they have DVD's - which made Robynson's day. She's been missing her Spongebob and Thomas shows. :) We watched some movies and took it easy. On the PICU floor, they kick everyone out from 7-8 am and pm. On the Surgical floor, they didn't. That's nice because Robynson decided to sleep til around 9am each day there. :)

Grandma and Grandpa Barlow (my parents) came and visited and then took me out for dinner so that I got a little time away from the hospital. Colleenia and Kaylee met us there, too. They couldn't come to the hospital because the last thing they need is to catch something from Robyn or the hospital and take home to Sean! But we got to visit at Sizzler and enjoy each other's company for a little bit. Colleenia had been doing some 'bargain shopping' and bought a bunch of school clothes / supplies for the boys so that I didn't have to worry about it. :)

Thursday morning Robyn had another Echo. It showed that her heart was functioning at 23%. So we have gone from 20% to 13% to 23%. Different medicines and we're hoping that the combo we have now (which are all oral!) will help her to continue to improve.

Grandma and Grandpa Hardman (Jeremiah's parents) and Draysen came over and played on Thursday night. Robyn was enjoying sitting on Mamah and Papa's lap, eating candy and ice cream and playing Legos with Draysen. I think we gave her a little too much sugar because she didn't go to sleep til around 1am that night! She kept pulling out the wires on the monitors, jumping up and down in her crib and talking. Yeah. My not sick acting, but still sick little girl is completely back to her normal acting little self.

Friday we had an Xray early in the morning. They let her leave the room for the Echo on Thursday and this Xray. Robyn loved the wagon she rode in to the appointment. She also loved the fishies on the walls. She kept wanting to go outside to see the fishies, but she was still on Precautions, so they wanted us to stay in the room as much as possible.

They came in around 10am and told us that we would probably be going home that night. I called Jeremiah and he left work to come join us (and pick us up since we were living out of our van this whole time). He got to the hospital around 1pm. Robyn was super excited to see her daddy. :) They both took about a 2 hour nap - waiting to be discharged. I finished applying for Financial Aid but was too excited to sleep. I tried to catch up on some of my missed computer time. :)

The last things we did before leaving the hospital was take out the PICC line, sign discharge papers, and pick up just over $200 in medication. Enough for 2 weeks. YIKES! We have another doctor appt on August 19th to do another Echo, Xray, and meet with the Cardiology doctor. We're going to check out how the meds are working and hopefully see a HUGE improvement. :)

PICU time

2009-08-06T17:09:00.000-07:00

During our stay in the PICU (Pediatric Intensive Care Unit) at Primary Children's, Robyn had 2 Echo Cardiograms, 2 IV's, a PIC line, a blood transfusion, meetings with with the Cardiology team daily, a one-on-one nurse, and lots of special one-on-one care. We had great nurses and doctors who tried to be her friend, but she wasn't having it.

Because we don't know what has caused her to go into heart failure, she is under precautions. Which means that all Doctors / Nurses / Medical personnel have to wear a yellow protective coat and a mask and she wasn't allowed to leave her room. So all Echo's were done in her room. All labs were done in her room. Her PIC Line was done in her room - well, the first try, anyway! It didn't work the first try, so they took her to a sterile room to do it thru Xray.

They did lots of blood work and lots of labs. From tests on her mucus (yep, booger tests) to blood tests. The only 'virus' that came back positive was for the Common Cold. They don't believe that the Common Cold is the cause for her to go into Heart Failure, so there was probably something else some time ago that is just now bringing her down now that she has a cold.

We had one nurse for 3 nights in a row. Her name is Cindy and Robyn actually started warming up to her by the time we were transferred off the ICU floor and on to the Surgery floor. She was great. She gave Robyn a sponge bath, did her hair in piggy tails, put her in PJs, took out one of the IVs, fed her and just loved on her while we were there. Seriously, I love this lady.

Several of the other nurses would come back in to check on her when they were assigned to other patients. Even nurses that were never assigned to us would pop their heads in to see 'the polite and cute girl with the heart problems that talks really well for her age'. :) She got a reputation on the floor for saying 'See ya' and 'Thank You' after people left the room - even after they poked her. But she also got the reputation of the girl who would scream, cry and fight you just for walking in the room in a yellow coat and mask. Yep. She's a fighter. A fighter who's going to hate the color yellow...

I also think that everyone knows who Archer is now. Robyn kept asking for Archer and blaming him for making her hurt. She'd point to the IVs, PIC Line, her 'red toe', the blood pressure cuff, anything - and say 'Arsher hurt me'. Poor Archer. He's her hero and now he's also the person she blames for everything. She's learning early! Blame it on someone else.

We also met a few other families that are dealing with the scary PICU. There is a family of a little 7 year old girl who is on her 22nd Heart Surgery. Twice while we have been here they have had the scariest thing happen. They've been told that they think 'this is it, come say your goodbyes'. Both times she has pulled thru. :) There was a 13 year old boy who was riding 4 wheelers with his cousins and grandpa. The 4 wheeler rolled over on top of him and punctured a lung, broke some ribs, broke his wrist and other not fun and serious things. But he was okay. There is a family who's 9 month old daughter has been sedated for most of her time here (came in the same day as us and is still here). She can't breathe on her own. One of her lungs has collapsed. They don't know what is going on and why she won't stabilize. We've kept each other updated on our baby girls conditions...

Honestly, for such a scary experience, it was a good one. We had great doctors and nurses and techs and everyone. I just loved the PICU people. Never once did they make me feel bad or ashamed that we're doing all of this **GULP** without insurance. Instead, they would say "Don't worry about that right now, let's just get her better" and "You know, there are a lot of people who will help you out and just don't think about it". Not once did they make me feel bad for having to leave the second night because I was so freaked out by all of this that I made myself sick. In fact, they made me feel like I did the right thing!

I wouldn't want anyone to have to go thru this experience, though many have. It is scary and sad and horrible. But you know, you learn. You will make it. And things will be okay.

How We Found Out...

2009-08-06T09:03:00.000-07:00

As you probably already know, Robynson is currently in Primary Children's Medical Center. This has come as a shock to MANY people - myself included! Everyone wants to know what happened, so that's what this post is about.

On Saturday July 25th, Robyn had been kind of whiney, but she was okay. After all, she was teething, so she's never happy when that's going on. Angie and I were going to the Derby in Heber and my mom had agreed to watch my kids while we were there. On the way to Heber, Robyn threw up water in Angie's van. I apologized and we took her to my mom anyway. My kids do sometimes throw up when teething. Robyn was whiney and sad while at my moms and threw up again a few time before we made it to Provo. Sunday she seemed whiney, but she was fine.

Robyn was good for a few days - she played like normal and ate like normal. Maybe a little whiney, but she was teething, afterall!

On Wednesday night, she threw up again, but it was after coughing so much that we didn't think anything really of it.

Thursday she was miserable all day. She just layed around the house and cried and whined. She didn't want to eat anything. Now, if you know my Robyn, you know that she has quite the appetite, so for her to not eat, I knew something was wrong. Something else unusual about the day was that she never had a wet diaper. I was trying to give her anything she wanted in a bottle, but she just wouldn't drink anything. She finally was acting like herself when Daddy came home from work. She ate some dinner, drank a little and was happy. Daddy does have that affect on Robyn. :) She was getting a little whiney before bedtime... That night we layed her down and she instantly threw up. No coughing involved.

Friday (early) morning, Robyn woke up crying at around 3am. I woke up with her and took her out on the couch. We watched some cartoons and she drank a little Gaterade that i gave her in her bottle. I took her temp (102 degrees) and was watching her breathe. I noticed that she was breathing really fast / hard. She just didn't act like she was feeling good and I got a bad feeling when I was watching her breathe. I decided that when she woke up if she wasn't acting better I was going to take her to the hospital.

She woke up around 9:30am on Friday and she still felt warm and was miserable. Still no wet diaper. I called Summit Pediatrics (or Heber Pediatrics), but their message said that Dr. Dave was out on Vacation. Robyn was too sick to wait so I made her an appt with a Dr. in Provo. Dr. Harris at Grandview Medical saw her around 12:30pm. Robyn had freaked out and wasn't wanting ANYONE to touch her. But she was coughing and Dr. Harris thought she could hear Pnemonia in Robyn. We discussed our options - from non agressive to agressive. After leaving the room for a minute, she came back in and decided that she didn't feel comfortable letting us go home and said she wanted to admit us into UVRMC for Pnemonia.

I called my neighbor, Shiree - who was watching Archer for me - and said that Robyn was being admitted to the hospital for Pnemonia. I called Jeremiah's mom and asked her to go pick up Archer (since she already had DarTanion) and explained that Robyn was being admitted for Pnemonia. At UVRMC, they started giving Robyn fluids for dehydration and took Chest X-rays to see how bad the pnemonia was. In the meantime, Jeremiah showed up. So did Lance, Shiree's husband. He's also in the Bishopric of our ward, so it was comfort to have someone there to help with a blessing.

The Doctor came in and looked pretty upset. She said that they didn't find pneumonia, but they saw something else disturbing. An enlarged heart so they ordered an Ecocardiogram. The Ultrasound Tech didn't talk much during the Eco and when he did, it was really quiet. Still, I guess I didn't know how serious it was. After the Eco, Lance and Jeremiah gave Robyn a blessing. After the Eco, the Doctor came in and said that they were going to transfer Robyn to Primary Children's hopsital because they were better equipped to handle this sort of situation. Her heart was approx as big as an adult male's heart and had fluid on it. They said it was only functioning at about 20% and that she was having Heart Failure. I immediately started to cry as they explained they were probably going to have to get Robyn to Primary Children's by Life Flight because it was so serious and they were afraid she might not make it by Ambulance.

Life Flight showed up and sort of took over from there. They checked her out while she screamed at them, but she would get so exhausted that she'd just give up after a few minutes. They strapped her to the carseat gurney and we followed Life Flight out of the hospital to the Helicopter. We watched them load, then fly away with our baby.

Jeremiah and I called our parents who got everything together and left to meet us at the Hospital. We ran home, grabbed a suitcase (thinking we would be at the hospital for maybe a few days) and stopped at Subway because we were both needing to eat so that we didn't pass out from hunger /shock / exhaustion. While at Subway we got a call from Life Flight that Robyn had landed and did great on the flight. She was in the Hospital on the ICU floor and would see us soon.

Both my parents and Jeremiah's parents beat us to the hospital. They were calming her down while she waited for us. We met with our Nurse Elizabeth, Dr. Costello and a Cardiology Doctor. They reviewed our family health history, Robyn's health history and everything they could think of. Then after a while, the Cardiologist said he believed what Robyn had wrong was either Viral Myrocarditis - heart failure brought on by a Virus.

The night was filled with Doctor visits, blood tests, lots of monitors and tubes, medicine, screaming and crying, no sleep, and me making myself so sick with worry that I was throwing up. Jeremiah and my Mom spent most of the night in the room with Robyn while I cried myself to sleep in the family waiting room with my Dad.

The next day they did an Eco again (they had to sedate her) and found that her heart was only functioning at 15%... She was still tired and angry, but at least she was fighting.

Okay, she's awake again and wanting to be held, so I will post more later. I still have about a week to catch you up on, but know that she's acting more like herself and eating and happy now. And we're off the ICU floor!!! :) Thank you for everything.