Follow Up Visit, #2

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

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

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...

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!

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

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

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

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...

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.