It turns out....

That we are STILL HERE!! You can interpret that positively or negatively. Yes, we are still here, but we are STILL HERE! My little daughter Mia is something else. She has been spiking fevers of 104 degrees for the past two days. All of her cultures are coming back negative, but she has been on antibiotics and they think whatever she has is being masked by the antibiotics. They run many weekly test on her. One test which measures heart function (bnp) was 4000. Normal numbers would be anywhere from 1-100. One of the nurses informed me that in all of her nursing career she has never seen a number that high. Awesome! Mia really likes to break records. I am continually amazed at her ability to beat the odds. It has been a difficult week with her fevers, and heart rate at 220, but she is finally resting.

On the Thank you front- I am super behind. My husband mentioned that I have great friends- and he is right!! I am so lucky that I am not in this alone. The best women I know have been cooking, bake saling(is that a word?), tending, homeschooling, sewing, driving my children to me, taking my kids to piano /preschool,and calling the ICU all the time to keep me company. When I came back from the wedding I had many packages waiting for me. So many of my new heart mommy friends and long time friends are spoiling me. I really appreciate everyone's love and concern as I go through this crazy time. Oh, and I have watched a few wedding videos- thank you for responding to my request.



Me and Mia- we have been spending a lot of time together :-) We need a heart! Boy do we need a heart.

Bake Sale

Our burden has been lifted in many ways recently. All of the phone calls, visits, dinners, help with kids etc. My wife has so many wonderful friends that care so much about her. This last week many of her closest friends held a bake sale at the YMCA. Thank you to all who participated in this, I know Mimi is really touched by the support. Also, thank you to everyone who is helping take care of our other two kids. as well as visit the hospital, and sit with Mia when Mimi has to be away. It has certainly made it possible to focus on other things. This has been very touching. It is often difficult to know how to express it, but thanks again. I have seen this community around us do so much and it has been a lesson time and again of how great people can be.

Dinners

There have been dozens of friends and family helping us these last months. One awesome help has been dinners. Every week dinners are dropped off at our house, which has proven priceless as I have been trying to be Mr. Mom while maintaining a job. We have been eating better and on time since these meals have come. Thank you to all who have prepared and dropped off meals for me and the kids. Last week some youth from our church made us the dinners, here is Morgan, Noelle and Julia.

The Wedding of the Year award goes to.....

My little sister Boo and her fresh and new husband Carl. This weekend was a wonderful break from all things ICU. Not only did my sister get married, but I spent the weekend with my Jense and Ellie.

Telluride CO is like a glorified Park City. It was beautiful- everything about the small town was perfect for their wedding. The hotel we stayed in was right next to the gondola. My children had a slight obsession with the gondola, so being steps away was ideal.

They were married at the top of chair 7. The view was incredible, the vows were sweet, and the bride was gorgeous! It was the perfect spot for the most elegant and romantic wedding. I love weddings! Every time we go to a wedding I always lean over to my husband and say, "I want to get married." Which means- I want to relive our wedding day. Listening to their vows gave me a new appreciation for my spouse and how I felt on my wedding day. John was at the hospital and wasn't able to witness this amazing wedding. He missed out, but spent some quality time with little M.

Unfortunately the flower girl was cold and way to attached to her mommy. She did make it down the isle with a little help from moi. I am sad because doing something like this is totally up her alley. She had a fever earlier that day, and was pretty sick- poor girl. She had been talking about it for months and then when it was time to toss her flowers, she needed a little coaching.

It was so great to spend time with all of my sisters, and see their families. I always thought that I would raise my kids living next to all of my sisters. We are all spread out, so I cherish the occasions that we are all together.

It was a fabulous weekend, and I can't wait to see the video ;-)

here are some pics- enjoy.

Zip

They love the zip line.

The Boyz

A couple weekends ago my closest college roommates and buddies came to town for the BYU/UW football game and for a reunion of testosterone. In all we met up with 9 of us that had originally met in the dorms at Ricks College in 1995. People flew in from Utah, California and even Washington DC. We did a lot of things like scrapbook and look through magazines such as Martha Stewart Living and "O". Not really. We had a lot of late nights reminiscing about all the crazy things we did and playing board games. The BYU game was awesome. It was down to the wire and was nice to walk out of there victorious. Looks like the BYU has a very good team this year. We toured Seattle waterfront, visited Alkai beach, and had a very good time. We ended up renting a 6 bedroom house for a three day weekend which was nice, and got to swim for a while at the Bean Estate. I feel fortunate to have met up with such a good group of friends early on in my college career. It is fun to watch as careers develop and to see what everyone is up to.

Daddy Daughter Date

Mia and I had this weekend all to ourselves. We decided that due to all her hookups and drugs and such, that we would keep our activities limited to the hospital bed and the rocking chair. Friday morning I dropped Mimi and the kids off at the air port for a weekend at Telluride where her youngest sister Boonie was to be married. This gave Mia and I three full days just the two of us. She has had a very good weekend and has done much sleeping. It has been nice to have hours on end where I can hold her with nothing else pulling me in other directions. One of the nurses put Mia on her stomach (I have only seen her on her back or side) and as I had these feelings inside that were saying "That is the single most amazing thing a baby has ever done" I realized that my dad tendencies have kicked in with Mia the same as I feel towards my other two roughnecks. Mia now weighs 8lbs 6oz which is still small but its good that she is putting on some weight. A month ago on Aug. 22nd she was 7lbs 8oz so that is almost a pound in a month. The average baby gains 6.6 oz per week and for the past month that puts Mia gaining 3.5oz per week. Not too bad. The doctors say it is a good sign that she is gaining, that it shows that they are successfully keeping her body as normal as possible while enduring heart failure. And a nurse was saying that there are more heart possibilities if she were a bit bigger. So here we sit patiently waiting. Mimi should be home soon to tell us all about their adventures in Colorado.

Our Favorites

Let me introduce some of our fav’s here at EL HOSPITAL. Since we have long moved in, we are well acquainted with the people that work here.


First let’s start with our Favorite Nurses… well let’s be honest we have loved them all except a few ;-) Many of the nurses are my age and we have a lot in common. A couple weeks ago, we were all reading the twilight series and had to talk about it during all their shifts. Candice, Brooke and I got into trouble for “talking at the nurses station” Some nurses are a wee territorial of their espace. Of course I can’t remember back to the NICU days, but there have been some fabulous nurses that have made this experience much more enjoyable. We love Terese, Candice, Brooke, Fiona, Jenn, Ian, Jana, Becky, Kristen, Sara, Maggie, Denise, Michael, Sol,Vanessa and many many more…we have had over 50 nurses- Thank you nurses!



Dr. Boucek (far left) is Mia’s transplant Cardiologist and is a wonderful man. He is always very calm and takes time helping me understand every little thing. Mia’s condition changes from day to day, and he makes sure I am on board with her treatments. He also values my opinion in all of her care, which makes me feel great, yet a little bit uncertain. Last week I went down to meet a mother of a girl who had a transplant and Dr. Boucek was spinning her around in a chair. He is like a grandpa to all.

Dr. Baden (center) is our favorite attending here in the CICU. All of the attendings are great- really they are. Dr. Baden is always friendly and genuinely concerned for his patients. We love Dr. Baden! When we were on the news he came into our room and watched the news with us. Too bad I was crying in the broadcast. They caught me on a rough day. I love the doctors that care about us as a family!

There are also many Cardiac ICU fellows that we have grown to love. This is Jerry (far right)- he actually used to be an attending, but went back to become a cardiac fellow. The fellows are the people in charge when the attendings aren’t around. It has been interesting learning about ICU hierarchy.

Ray- he is the guy who runs the grill. (no pic yet) He is always friendly. My favorite thing about Ray is that he is always singing to himself. He is usually singing an Airsuply song, but I have heard him mix it up with a little REO Speedwagon. We have been on a first name basis for awhile now. My name is “gardenburger on wheat? ” This is how he always greets me.

Mimi- She is our favorite greeter. For obvious reasons! She is super sweet and always asks how I’m doing.

All of the ICU desk ladies- and Jim. We have to wait for them to ask the nurses if we can go back into her room. Some of them have stopped calling back. That is a true sign that we have been here TOO LONG! They are always friendly, and gracious about transferring calls back. I feel bad having my own answering service. If only I could use my cell phone in the ICU. When I leave I will have to do something fancy for them for how much they do for me. Don’t let this detour you from calling- I spend all of my time in here and love phone calls.

Pam, Jason, and Kelly are the transplant coordinators. I don't think there are three nicer people on the planet. Honestly, they are always smiling! I guess if you were the ones coordinating childrens lives being saved it would be difficult not to smile. Someday I would like to have their job- even if it was just for a day.

Hopefully soon I will be doing a post about her TRANSPLANT SURGEON. I know who they are, but I don't know them very well. My heart starts beating fast when I see them because they get the call if there is a heart for Mia. One day, they will come in and tell me that the wait is over.

Mailing Address

I have gotten several emails about how to send stuff to Mimi. Sadly things will get to her more quickly at this address than our home.


Intensive Care Unit
4800 Sand Pointe Way NE
Seattle, WA 98105
Attn: Mia McDonald

I just spent 3 minutes finding a stamp image for this. Mimi will be so proud. Can't post without an image. Heavens to Betsy.

2 Suzies a Teagan and a Maddie Blanket

Well, I am better today. Thank you so much for your words of encouragement! I decided I needed a happy post to grace the top of my blog. I have quite a bit I need to blog about, but feel like I need to be in the right mood to do so.

My sister Suzie was in town this week. She came all the way from Samoa to meet little Mia. Well, actually she came to America for my little sisters wedding that is this Saturday. We were just a little added bonus to her travels. She was able to meet and hold Mia- intubated and all. I miss my sisters, all of them! I am really excited that we will all be reunited at the wedding. All of the transplant Cardiologist tell me that she will get her heart while I am gone. I wasn't planning on going, but I need a break. I think if I didn't go I would regret missing my baby sisters wedding. John will be here with Mia, and they can do some bonding. Besides, Ellie is the flower girl, and she will need some coaching. OK, now that I have listed all of my reasons why I am leaving my newborn... aaahhhh! sorry, small self therapy session!



Meet the Maxwells. Teagan is a sweet little baby who just had her second surgery in a series of three. Her mom and dad are great. When I first happened across her blog it was a post of Teagan laughing that gave me so much hope. Post surgery they were a few doors down. We have spent the last couple days talking hospital talk. There is a lingo that you adapt to as a heart mommy. The word "sats" (oxygen saturations) seems to be the post popular. My life has been nothing but medical terminology- I can throw out acronyms with the best of them. Susie is fabulous...I have loved having her here- it is nice to eat with someone besides crazy bird. I am sure we will keep in touch long after we can escape this place!




Another heart mommy Katie made these wonderful blankets for the babies in the CICU. I read about her blanket project on her blog- and was so impressed with her awareness of the other cardiac babies. She wanted a distraction for the mommies, and always felt better when her daughter had a nice blanket on her bed. I was secretly hoping Mia would get one, but at the time we were on the bridge. Later that week we were moved back into CICU. One of the night nurses brought in a blanket for Mia. When I saw this super cute blanket I asked her in a really excited girly voice, "is that a Maddie blanket?" She was surprised I knew about them and went on to tell me about how great Maddie's mom is. Here is Mia chillin on a Maddie blanket..Thank you Katie!

Little Michelle River

The last day I walked out of the doors of my High School was also the last day I have laid eyes on about 98% of all of my High School friends. There are a few old friends however, that I keep in touch with regularly. This weekend my pal David (Friends since 8th grade) and I took our kids camping. It was a 24 hour trip, but was packed with hiking, berry picking, exploring, river running, fire starting and half a dozen other wonderful things that goes along with camping. When we were packing to go I did an inspection on Jensens preparations. He had packed at least two of everything that I could think of, on top of things I didn't think of such as the wide brimmed "hat, in case it is sunny." I was so stuck on his packing skills that I ended up only packing Ellie a couple pairs of pants and nothing else. This would have been ok had she not dumped an entire Gatoraid on her chest in the first minutes at camp. Good thing Jens had two of all.

Where we stayed is probably my most favorite place on the planet. Just outside of Eatonville there is a river that has a series of waterfalls, (3 of them very large). The entire area is just gorgeous. And, most of the time you have the place all to yourself.



The water is really low right now and the kids had tons of fun exploring since at most places the river is only ankle deep. Here is where there are some natural water slides that David went down involuntarily as he was posing for a pic.




At the bottom of the largest waterfall there are huge caves behind the falls that one can climb into. This was a big hit with the little ones as you can see.


Here is our crew of kiddos.

Running on Empty

Yes, I feel like I am running on empty (you know you just sang that song in your head). I am still able to smile and enjoy conversation, but I am sooooo tired. Not physically tired, although my body is exhausted. I am emotionally tired. This is totally the post that I am sure I will regret posting later, but I have never felt so much pain in my life! Things took a downward spin on Thursday during the night. I was sleeping in a sleep room when I got a phone call from the nurse. They told me her line hadn't been working and then had to get access for her medications. She told me they had to shave her head. Suddenly I wasn't sleepy AT ALL. I felt like I had been kicked in the stomach- not that I have been kicked in the stomach before in my life, but this is what it feels like I'm sure. If I had been paged, I could have told them that there was no use trying to access her veins in her head. Needless to say, her line started working again, and the beautiful hair that had once adorned my daughters head was removed for nothing. The line had issues and was replaced the next day, which is a huge deal all in itself, but the hair being gone truly broke my heart. She never looked like a sick baby, and now she does. It is difficult because I find myself holding onto the little things and when they are yanked out from underneath me I don't recover well. That day I held her for hours on end and pretty much cried the entire day. Four days later, I still look at her and get teary. My emotional breakdown isn't entirely about the hair, but is a manifestation of how heart broken I am. I love this little peanut and she is going through so much. I feel like I have been holding up so well, and I just don't know how much more I can take.

They replaced her line and she is now intubated, which makes it difficult to hold her because she turns purple when we get her out of bed. Seeing her cry and not be able to breathe is so heart wrenching- as much as I have seen her go through this it is just as alarming as the first time she was intubated.

I am sorry to sound so down, and I do know we will get through this and Mia will be running around in no time. I just need it to happen soon. Ellie cries daily for her momma, and I can't heal her heart either. I always thought that we would get a heart and be home, and now I am forced to think about spending more time at home for my other kiddo's sake.

Please pray hard for my little Mia, that she will be stable until her heart arrives. And that the rest of her family will make it to her transplant.

As I rocked her today, a song kept popping into my head. The Michael McLean song "hold on" is a great song for someone in my situation. All I have to do is hold on... (listen to me give myself pep talks). I have to talk myself through a lot lately. The light will come- I know it will. We are just having a rough minute and could use some good news.

Mia did receive a blessing today which was wonderful! One thing is certain- she has a loving Heavenly Father who has blessed her so much. She has so many guardian angels, and a wonderful Savior who has helped us all through this. Hold on Mia!

New Central Line

Thank goodness our beloved aunt Nat took that last picture of her long hair because the nurses shaved off the front and sides of her hair last night. If you understand about moms and their daughters hair, then you understand the ramifications. This was a crushing blow for her to say the least, as she spent the better part of the day crying. It appears that last night Mia's central line (that is used to administer life stabilizing drugs, and whatever else is needed to be introduced into her bloodstream) was compromised due to what they thought was clotting, but upon removal there was no obvious reason for it failing. The good news is that it is out and the new one is in. Her head was shaved in front in order to try and get an iv into her forehead since all efforts for a peripheral line failed, as usual. In the end all the shaving and poking on her head was for naught. They did get a line in the arm during the night, but took it out in the morning because the central line in her chest started working again. This time they ran the new line right into her heart, and it has two heads which allows for better results as far as longevity and flow. Mia actually had to have a more temporary central line put in her groin area so that she could bounce back while they were installing the more permanent line in her heart. Thank goodness my Mom and Sister Anne were here when they wheeled her off to surgery. That is a really tough moment each time. I rushed up to the the hospital to be with Mia when she came out of surgery. Mimi went to the temple with a good friend in order to pray and regroup. Thank you for the prayers. I love all the stories of everyone's kids who pray continually for Mia's heart. I am amazed at how they are concerned at such a young age. Cute. Mia has been out of surgery for an hour and half now and she is looking really good. They had a little scare when too much fluid plugged her breathing tube. Every time I see the doctors and nurses pile into the room for a coded, but obvious emergency, it is like my chest is being sat on by a large elephant. Mimi is so much tougher than I.

Calling all Wedding Videos

I just watched my friend Kimmy’s (no link due to her non blogging rebellion) wedding video. It TOTALLY made my day. Her wedding was years ago, and she finally sent me a copy of her ultra extravagant wedding. It was such a fun wedding- she had been planning it for YEARS! I know this because she told me all about it even before she met her husband when we were roommates at BYU. Despite a little bride’s maid embarrassment on the video- I loved the memories. I forgot that my hair was ever that short. I thoroughly enjoyed watching her wedding video, and needed the happy times footage. If any of you have copies of your wedding video’s send them my way- I burn a lot of hours in a rocking chair. No really, if you know how to make a copy I would love to have the distraction. There is something about weddings that make me so happy. If you are not married… GET MARRIED and send me the video.

I miss you Kim- it would be so fun to flash back to BYU and lip-sync with our wooden spoons.

Notes from Nats

So I'm back here hanging out with my new BFF, Mia.... We are pretty much in love (its a good thing Max doesn't know how to read yet...he might be jealous) It is amazing how strong this little girl is. She has endured more in two months then I have in 29 years! Okay, 31 years... She is really my hero. I just wish that I could give her a break and breathe for her and have my heart beat 180 times a minute, even for just an hour! It just doesn't seem fair. Being in the hospital has really given me a new perspective on being a nurse and understanding the patient's and family's perspectives. I think it has made me better at what I do.

Mia and I have an agreement that if she can just hold on a little longer then I would buy her a car when she turns 16. She didn't seem impressed but I assured her that it was a big deal. I don't want her cousins to be sad so I will have to see what I can work out for them.....better start saving now!

Weekend in Seattle

We were able to spend a great weekend with mommy a few weeks ago. John Curley, the host from Evening magazine, arranged for us to have free lodging in a very nice hotel in downtown Seattle. Our room service was even paid for!! Mimi became acquainted with John Curley a year ago when she was spearheading a fundraiser for a friend that was fighting cancer. John Curley donated his time free of charge for this cause and I know many have been humbled by his willingness to serve without asking for personal gain. When we knew Mimi would be in Seattle for a long time our friend Rebecca let him know about our inability to have family time. He hooked us up. Thanks John.



The first night we visited baby sis, and then just spent the evening in the hotel. Our children absolutely love the high life and would have been ecstatic just to have spent the entire weekend locked up playing hotel. We went to the zoo the next morning and the first thing the kids said when we walked in was, "Can we just go back to the hotel!?" "Can we get room service?" They are in love with room service. So funny. At noon we went to visit Mia and arrived to a scene of nurses holding gauze over a bleeding wound due to a central line falling out. She had to have another surgery to correct this and so it was the kids and I at the hotel for the remainder of the weekend. We had a great time considering the added drama. We all miss Mimi and are grateful for the time we are able to have together.

Instead of going crazy I'm....

So, you could say that I am finding new ways to entertain myself in this hospital. Ways I am trying to keep my sanity. For example, If I am alone in the elevator I like to dance around hideously. My husband will be the first to tell you all of my hideous dancing. Don’t get me wrong, as a dance teacher I should know how to dance, but sometimes I can’t help but dance like William Hong (I’m sure you forgot all about him). As sad as the days can be here, I force myself to dance in the elevator and it always makes me feel better.

I talk to EVERYONE, and by everyone, I mean I talk to people who do not speak English. We have been roomed with a few Spanish speaking families and I have taken every opportunity to brush up on my Spanish skills. For some reason I have zero inhibitions when it comes to speaking Spanish. My husband speaks Spanish on a daily basis and for some reason I feel like his bilingualism transfers onto me. Everything I learned in Mexico has long left my brain. Luckily the friends I have made are very patient with my constant second guessing of what verb form I used. I was able to “interpret” many random things for my friend to the nurses. Often times we wound up laughing because of what I thought she said… good times! She is gone now… most of our original roommates are long gone. Our latest roommate was a sweet little guy who just had his Fontan procedure. There are so many sweet little babies with HLHS.

I eat out side in a little courtyard with a seagull (wow, that sounded depressing). This seagull is Crazy, and looks crazy too. He lands right next to me and waits for me to throw him some food. His beak looks like someone bent the top and bottom in opposite directions. I like him because he is not afraid of anything, and literally comes within inches of the food. He is a picky eater.. Probably from getting fed so frequently. I try to get a roll to feed the other little birdies, but the seagull will have none of it. What bird doesn’t like bread??

Besides my time spent in the elevator and with Crazy beak my hours are spent in a rocking chair holding the little one. Not much has changed. She is now on nitrogen, and they are weaning her Morphine drip. She now has regular doses of Ativan for the discomfort. She is still seven and a half lbs, but they assure me she is getting the nourishment to keep her brain developing.

We are holding strong!

Paintball Party

Here is Jensen. Our big boy. This year he wanted a Paintball Party. He and Sis have grown attached to Daddy's paintball guns and love to shoot the fence in the back yard. Mimi likes to go all out for birthday parties, but she had to tone it down a little this year. She and Jensen planned it out and as usual we had lots of help. Thank you to Jaimie buddy for that awesome cake and to the girls for filling balloons. Aunt Natalie used her Paper machet skills to fashion a paintball pinata. (I have heard tell that she can also weave baskets under water).


There must have been a couple dozen kids in the back yard which made it a miracle that no one got hurt with all the running around. After trying to brake them on this target we ended up having a free for all with all the kids throwing the paint against the house where it actually did brake. There were a couple people that really got doused with paint, one being Rob Critchfield in a very nice and crisp white button up shirt. The kids loved it.
Attaboy Jensen.


The cake