Transition Time

So Christmas is sneaking up very fast on us.  We have been here in Texas about a month now, minus a week for Thanksgiving.  Aubrey had an appointment at Texas Children's Hospital last week.  The appointment was tough on her with all the pokes and stickers they stick all over her, but she is doing very well.  Her heart is certainly not worse than it has been and may even be a little (very little) better.  She has grown but the thick part of the heart has not.  Her heart is still squeezing very hard, so they increased her dose of the medicine again.  Overall we were very pleased with the news.  We were sad to learn that her very excellent dr. is moving to Ohio and we won't be able to see him any more.  But I am sure he is leaving us in capable hands.  

We are getting settled here in Texas.  The house is coming together and we have our vehicles.  I am still working on getting a license as that is a very time consuming process here.  We really like our home and the neighbors we have met have been great.  We found a church and even ran into friends from Anchorage the first Sunday we checked it out.  That was such an encouragement and an unexpected blessing.  I am looking forward to better weather and our pool to be complete.  So far the transition is pretty tough on me especially.  Brian likes his job and Aubrey is all settled.  I hope we meet some friends or get in a small group soon.  May parents get here Monday night for a week.  I am SO excited for that.  I think if I just get a few more things in order I will feel more at home here.  Thanks for keeping up with our family.

Goodbye Alaska. . . Hello Texas

We leave Alaska late tonight with very mixed feelings. On one hand we are very excited for the changes to come. I am not sad to leave the weather here for a warmer climate. We have a whole new set of adventures awaiting us. Brian's new job will be very different and and exciting change for him. If all goes according to plan, we will arrive in Houston around noon tomorrow, have a final walk through of our new house at around 3. Thursday the 20th is Brian's first day at his new job, our closing date on the new house, and my birthday.

We are also very sad to leave our life here--the only life we have known as a married couple. We have wonderful friends here in Alaska that have become family to us. I know there will be challenges and many lonely moments in this time of transition. We hope to find a church home and get plugged into the community quickly.

Flower Girl

Maching Jammies!  Here is Aubrey with her buddy Maya

Here is our Little Flower at the ConocoPhillips Family Halloween party.  She really enjoys dress-up, and we really enjoy showing her off!  

We're Moving.

The Buck family is moving to Houston.  A few weeks ago Brian was offered a job he couldn't refuse in Houston.  He will still be working for ConocoPhillips, but in a very different role.  His new position is an assistant of sorts to a VP in the company.  It is a neat opportunity for him to meet people in the higher up roles in the company and learn more about what they do.  It will involve quite a bit of travel, setting up meetings, and power point presentations.  It is a 12-18 month position.  It is kind of an honor to get this job, and at the same time it is nicknamed the "Bag Boy."  He is excited for the change after several months of very intense days at work and a lot of time in the field.

There are lots of emotions with this move.  We are very sad to leave Alaska--mostly our friends, our church, and the outdoorsy lifestyle we have so enjoyed here.  We will miss the amazingly beautiful landscape God created here.  This really feels like our home as it is the only home we have had together.  On the other hand, we are very excited for some of the changes this move will bring.  We will be near Brian's parents for the first time in our marriage.  We will be near Aubrey's doctor at Texas Children's Hospital.  And buying a home in Houston is very exciting to us--we are hoping to find one with a pool!  I am really looking forward to the warmer weather.  (it was around 9 degrees here this morning, brrrrrr!)  We go on our house hunting trip on Friday the 31st, and then move down on the 19th of November.  It is all happening VERY fast.

Big Birthday Girl!

Aubrey and I got back from a week in California visiting the Frarys and meeting baby Jace and put together a kickin' birthday party!  We had a blast in So. Cal!  It was in the 80s most of the time.  We got to wear shorts and swim and enjoy some sun.  Brian met us for a couple of days over the weekend before heading to Houston for a conference.  The Frarys and I took Aubrey out for a birthday dinner at a Thai restaurant.  They gave her a piece of cake and sang to her.  She tried to dig in with her hand but the cake was too hot and she burned her fingers and cried.  But that didn't deter her too much; she enjoyed her cake as I cooled pieces for her.  It was so great to catch up with such good friends.  We also met up with our friends we call the Bumpii who used to live up here.  We left the hot weather to arrive home to weather below freezing and snow on the ground and in the forcast.  Winter is in full swing already here.  

Aubrey's party was a lot of fun.  I had so much fun making invitations, planning the food, getting party favors and balloons!  Aubrey wore her pink tutu and LOVED it!  We had lots of kids and lots of adults celebrate with us.  This birthday was really special to us after all that has happened in the last six months.  It really gave us a reason to stop and reflect on how much God has blessed us.  We are so thankful for Aubrey's health and all the friends and family who have been such a big support to us.  

Holding Steady

We just got back from the Anchorage cardiologist's office.  Aubrey is doing well.  Things are about the same as they have been the last couple of visits--which is good.  Aubrey had us all laughing as the Dr. was trying to do her echo and she was dancing to the music on the video he put in for her.  We scheduled an appointment with him for February and will try and get into the Texas doc in between.  Aubrey qualified for some financial aid for all of her medical visits so we are feeling very blessed in that regard as well.  We are thankful for your continued prayers.  We know that Aubrey is special and that God has a special plan to spread hope and life in Christ through her.  We have already seen God doing that through her and it is exciting.

Our funny little girl

Last week for Brian's birthday, we went on a family hunting outing.  Really we went hiking in moose country with a gun.  We didn't see any moose, but we saw some tracks and other signs of moose.  It was a beautiful autumn day.  

Aubrey is getting into more and more every day.  She was very busy while I was making a meal for some friends.

Aubrey makes me laugh every day.  She is so funny.   We were given a little girl's snow suit (that should fit in about 2 years!)  Aubrey wanted to put it on when she saw it.  She was like a big marshmellow.  .  . and she liked it!  "Ralphie, I can't get up." She seems to have a thing for shoes.  She is always bringing me her shoes and insisting that I put them on her little feet.  Even in jammies she wants to wear shoes too!
We have had a week with Brian out of town, and he is due home tomorrow.  We can't wait.  Aubrey misses her daddy.  We look at his picture in Aubrey's "Who Loves Baby" book and she kisses him and gives him cuddles.  She talks on the phone to him and even gives the phone kisses when he is on the other end.  She is still not quite walking.  She does pretty well as long as she can hold at least one hand.  She takes 1 or 2 steps on her own.  Hopefully Daddy doesn't miss her first real steps!  She's so close.

48 Hours

Brian went to Dallas this past weekend for our friend's wedding.  He unfortunately got stuck in Salt Lake Sunday night because of a volcano.  Meanwhile, early Monday morning (3am) Aubrey woke up with some diarrhea.  In the morning, it was clear she was sick with that and a fever.  Knowing that it is very important for Aubrey to stay hydrated because of her HCM, I called the doctor and got an appointment to see a pediatrician at 2:30 pm.  Brian was in Seattle by then, but unreachable until then.  When I took her in they told me they wanted her admitted to the hospital immediately to get an iv going.  So a nurse walked me over to the Children's hospital (same building as the pediatrician.)  It was very upsetting for Aubrey to have so many strange faces poking her and listening to her heart and measuring her and weighing her.  So it took a long time (a few hours) to get her set up, but eventually they gave her a mild sedative and she calmed down so she could have an echocardiogram and get an iv started.  

Her heart looked about the same as the last few times.  The pressure gradient was a little higher in the outflow to the aorta, but that is easily explained by the slight dehydration she was experiencing.  Brian finally got there during the echo.  I felt so relieved to have him with me.  That first night in the hospital was pretty rough.  Aubrey didn't sleep that well once the sedation wore off.  The nurses were constantly coming in to give her medicine, check her vitals, or just stop the beeping machines every time she moved and disrupted one of her lines.  Aubrey wouldn't sleep unless one of us was in the crib with her, so we took turns squeezing in the crib and stretching out on the tiny little pull out bed for parents!  Needless to say, none of us got much sleep Monday night.  

Her fever went away in the night and by noon the next day she had had her last loose bowel movement.  On Tuesday they had to redo her iv, the first one slipped out, and it took 3 tries--and a LOT of crying--before they got a vein.  I cried, too.  It is so hard to see your baby hurting and not be able to do anything to make it better.  We all slept much better Tuesday night, they kept the tubing in her arm, but unhooked the iv, so there was no more beeping that night.  They finally let us go home at noon today (Wednesday.)  And we rejoiced! 

It wasn't a very fun couple of days.  They were worried she had some nasty virus (she didn't) so she was confined to her room and couldn't play anywhere else until a couple hours before we left.  The one thing that Brian and I were so thankful for was that the Olympics were on tv this week! The timing was great for us to get lots of time to watch.  Aubrey Ella seems very happy to be home, but it is becoming a struggle to get her to take her medicine.  I am afraid the hospital has made her more opinionated.  She got really good at saying "Ma Ma!"  

A Close Encounter

For those of you who don't live in Alaska, here is a glimpse of the things we deal with here. . .  We had a beautiful day here today.  I wanted to enjoy the outdoors and I was tired of chasing Aubrey around and pulling grass, rocks, and other "goodies" out of her mouth.  So, after I changed her cold, wet clothes (she pulled a bucket of cold water on herself,) I strapped her into the chariot and went for a jog with her.  I was running through the park near our house and paying more attention to Aubrey than to where I was going.  When I came to a T in the path I looked up and saw a moose right in front of me!  If I had reached out my hand I would have touched her nose!  I gasped and then turned on the after burners!  I have seen a lot of moose, but not that close up!  I quickly thanked the Lord for protecting us.

Praying for Sunshine

We haven't had much of a summer--it is the coldest summer on record here in Alaska.  So we haven't gotten out as much as we had hoped this summer.  But Aubrey has been keeping herself and her Mama busy anyway.  Today she climbed up a couple of stairs on her own for the first time.  I can't leave her alone or she will find something to eat or go for the CO detector. . . or perhaps the trash can.  If you want to know how good of a house-cleaner you are, have a 9 month old crawl around for a little bit!  

Aubrey Ella is a handful, but SO much fun at the same time.  She has gotten really cuddley.  She snuggles her head on my shoulder--especially when she is tired or being shy.  When she wakes up too early, I bring her into my bed and she snuggles up and sleeps with me.  She just figured out how to wrinkle her nose--so now she does this silly little laugh with her nose wrinkled all the time.   She LOVES baths, so we are doing those much more frequently.  She has textbook crawling form--getting faster every day.  And she stands up on everything and will walk around as long as she can hold on.  Her favorite games are peek-a-boo, find the hidden block, and any kind of "I'm going to get you!"  She has been very interested in dogs lately--a little nervous even scared, but very interested.  She gets really excited when we watch our fish in the fish tank.

I think she takes after both her parents in that she doesn't want to miss out on any of the fun--but is a little more tentative (like her mama) of new people and situations.  Brian was out of town for the weekend and Aubrey and I went to our friends' house to play board games Saturday night.  The other babies went to bed, but not Aubrey.  I tried to put her down, but I finally gave in and let her stay up with the grown-ups.  She was perfectly happy to be up--until finally falling asleep in mommy's arms just before the game ended (at 1 am!)  She bounced back very well from her late night--slept in late and took an extra nap the next day and she's back in business!  I am thankful to have such a flexible baby.  

We had her 9 month well baby exam last week.  She's still doing great--though she has slipped down the growth chart a bit.  Babies growth slows as they become more and more active--and Aubrey has been VERY active for quite a while now.  She is now about 17 lbs 8 oz (25%) and 28 in tall (55%.)  Overall she is hitting every developmental marker and doing great.  We are going to start having her get a shot to protect her against RSV in October--something that they give babies who were born prematurely or have any kind of cardio/respiratory issues.  RSV is pretty common and manageable for healthy kids, but with her heart condition we need to take extra precautions to keep her as well as possible.  The medicine is actual antibodies for RSV, not a normal vaccine.  She could still get RSV, but would already be well on her way to fighting it if she does, so she wouldn't get nearly as sick.  The little boy in Texas we know with HCM like Aubrey's got RSV last winter and had to be hospitalized for it.  She will have to qualify to get the medicine, but the doctor was pretty confident that she will qualify.  

Our little family is doing pretty well most of the time.  Brian and I both feel a sense of disappointment about Aubrey's heart condition.  As long as I keep my focus on the present, it isn't too bad--she is perfectly healthy and a joy to all who know her.  When I think about the big picture and what could happen with her health in the future--I am so scared.  I have to immediately turn those thoughts over to the Lord and remember our future and her future is in His hands, not mine.  But that isn't easy to do.  Brian's work has him very busy and kind of stressed out.  He is working a lot, traveling a lot, and when he's home is on the phone a lot or at least thinking about work.  With such a busy past 3 months we haven't connected with friends as much as we like either.  With such a cloudy summer and all that is going on, I almost feel like I have SAD (Seasonal Affective Disorder--something very common up here in the winter.)  Brian and I have had a really good conversation about all of this.  He definitely needs prayer and wisdom from the Lord in how to prioritize his life right now to be there for his family, but still be a "good worker."  It is sometimes hard for me to reach out--and especially when I am hurting, but I need to make more of an effort.  So, along with other the things, please join me in praying for a Sunny August!

Little Big Things

Sometimes little things that shouldn't be a big deal hurt more than they should because they make me think about the big picture with Aubrey. I was frustrated yesterday because I couldn't get the right type of bottle cap for Aubrey's medicine at the pharmacy that makes measuring out the meds easier. Not a big deal, but I cried anyway. But most of the time things feel normal and great, but little inconveniences remind me of the deeper issues.

Aubrey Ella and I are enjoying a week with family. My aunt and uncle are staying with us and my parents are up here too. Brian has been out of town since just before they all arrived, but he will be back tomorrow. We have had lots of fun doing the Alaskan touristy things. And Aubrey loves showing off her latest skills. She is a "cruiser" now. She crawls, and pulls up to standing on the furniture, and is beginning to cruise around things she can hold on to. The tooth count is up to 5, and with that we found the first clear feature she got of Mommy's: the big space between her two front teeth! Mommy had to have oral surgery and braces to correct it, so we decided we better start an orthodontia fund for her! Aubrey LOVES to eat. She seems to like just about anything I give her--though lentils were not a big hit. I am always trying to come up with healthy finger foods for her as she enjoys self-feeding the most. Unfortunately, she often gets a little too excited and stuffs more food than she can handle in her mouth.

Oops, sounds like nap time is over!

In Good Hands

We are in Houston. We make the long trek back to Anchorage, tomorrow. Aubrey had her heart looked at Monday. That wasn't much fun, but went much faster than the last time we were down here. She was pretty groggy the rest of the day and slept a lot, but was back to herself today. We met with the doctor early this morning. His first comment to us was, "I think she has gotten a little better." He gave us a long explanation and showed us how things look better even though her septum has gotten thicker. She is responding favorably to the medicine she is taking. Her heart isn't working quite as hard to squeeze as it had been previously. He could even tell a diffenence in the sound of her murmur (I was quite impressed that he can remember what it sounded like before and distinguish between them.) We are to just keep doing what we are doing for now. She'll keep taking the same dose of the beta blocker three times per day and we don't need to do anything different unless she begins to develop symptoms (pale color, sweating, shortness of breath.) We will make an appointment with the Anchorage cardiologist for a month from now and then again in about 3 or 4 months. Then come back down in December. We are glad we came down, and also glad we don't have to come down for another 6 months (It's a really long trip.) We are so thankful to have family here and that Aubrey is seeing this doctor. We are in good hands.

Happy Anniversary!

Today is our Anniversary.  We have been married 4 years now.  We are so blessed.  God uses trials for a good purpose.  Brian and I are, without a doubt, closer and our love is deeper as a result of walking this journey together, hurting together, hoping together, and seeking help and comfort from the Lord together. Praise God.  I couldn't imagine going through all of this with anyone else.  

Aubrey is officially into everything now!  She has proven to me this morning that I need to do a good job of baby-proofing the house with a new perspective on what all she can find.  As I was attempting to pack for our trip to Houston, I found 3 wads of paper in Aubrey's mouth, then a penny (about to go in,) and, worst of all, she was chewing on a safety pin!  AAAAH!  She is now able to go from a crawling position to a sitting position and to stand up in her crib.  She crawls now, but still prefers the army crawl when she is in a hurry.  She has 4 teeth (two on the bottom and two on the top) and I can see the next two top teeth ready to pop through.  She loves to eat, especially when she gets to feed herself.  She seems to like pretty much everything I give her.  She had a blast with her grandparents last week.  And I am sure she will be glad to be back with them tomorrow as we go down for her check up at Texas Children's Hospital.  Monday she has her echo and Tuesday she has her appointment with the doctor early in the morning.  Brian's high school reunion happens to be this same weekend, so that will be fun.

This picture is from Memorial weekend when we took Aubrey on her first backpacking trip.  She did great, but her mommy got cold and took her home VERY early in the morning!  

8 Months Old

Our little girl is 8 months old now.  She is doing great.  Right now she is enjoying a week with Grandma and Grandpa Buck visiting.  She had her first experience fishing and clam digging down on the Kenai Peninsula.  Her Daddy caught his first king salmon on the Anchor River.  She is all over the place--she has perfected the army crawl but only crawls on hands and knees a little.  I am sure it won't be long.  She is used to being with Mommy most of the time and is starting to have a little separation anxiety when she goes to the church nursery or if Mommy just gets too far away.

Brian and I had our hearts looked at and are relieved to know that we have nothing to worry about and no need to limit our activity or do anything different than we are doing.  The Cardiologist told Brian his heart was "above average" for his age as far as fitness, and he was a little disappointed that it wasn't "excellent!"  I had a tiny little hole that she said was really common (25% of the population has one) but she didn't expect me to ever have any kind of complication with that.  

We have a busy few weeks ahead.  After this trip with Grandparents, we have 4 or 5 days at home before we head down to Houston for Aubrey's next appointment at Texas Children's on June 24.  Then just before the 4th of July, Julie's parents and Aunt and Uncle arrive for a week or so.  Brian is working on a really big project at work that has him very busy all day long and won't be slowing down any time soon.  With all the soccer, softball, and visitors, it seems like a pretty normal summer for the Bucks!  Day to day we would still never know Aubrey has HCM except that we have to give her the medicine  3 times each day.  We found a new little device to put her medicine in that makes giving it to her really easy.  That is kind of a relief.  We will probably wait until that appointment on the 24 to update the blog again.  Thanks for reading!

One Month Update

We went to Minneapolis this weekend to witness our dear friend Robin marry Ernie Parker.  It was a very fun outdoor wedding.  They planned lots of family activities including a scavenger hunt and bocci ball!  The park was also an educational farm, so Aubrey got to see some cute farm animals.  The hotel had a nice pool with a HUGE hot tub.  Aubrey really enjoyed swimming.  And we all enjoyed the Mall of America!  

Yesterday, Aubrey had her first check up with at the cardiologist in Anchorage.  It has been one month since we were in Texas.  We were very encouraged by what the echo showed.  The pressure gradient was much lower than the first time she had her heart looked at in Alaska and the number was very consistent with what they found in Texas.  The bottom line is that the medicine seems to be helping and the disease hasn't progressed over this past month.  He also thought that her mitral valve regurgitation had decreased some (most likely because the pressure in her heart had gone down.)  That is another good thing.  The doctor increased the dosage of her medication since she seems to be tolerating it well so far.  We are very pleased.  

Aubrey Ella is growing and developing new skills so fast these days.  She is so close to crawling--she does get around pretty well using an army crawl technique.  She will get up on hands and knees and take a couple of steps before resorting to the belly crawl.  She stood up in her crib the other day--that was so exciting and scary all at once!  She LOVES to walk around if anyone will hold her hands.  She takes very deliberate steps and the faster we make her go, the bigger her steps get (not faster!)  She is so much fun.  We have been enjoying getting outside more.  She really likes playing in the grass.  She is up to 27.5 inches tall and weighs 17 lbs.  She fed herself some graham crackers yesterday like a pro!  

We are enjoying our time together as a family so much these days.  We are doing well and constantly remind each other to keep trusting the Lord.  We have many unknowns in our future--I guess the future is always unknown, but ours is different from the plans we had imagined so it feels a little scarier at times.  We have a lot going on for the next couple of months.  Grandma and Grandpa Buck come to visit for the first part of June and Grandma and Grandpa Krause come at the beginning of July along with Julie's Aunt and Uncle.  Our next appointment in Texas is in a month so we'll be traveling again very soon.  Our softball season has begun and we are also organizing a soccer team that is starting soon.  On top of all of our activities and visitors, Brian is very busy at work and will soon be traveling more for that.   Thank you for taking time to read and catch up with what is going on with us.  

"Ma Ma!"

Aubrey made my Mother's Day!  She started saying "Ma Ma" a couple of nights ago.  We even were able to capture the instant replay on video.  We had a great Mother's Day weekend in Girdwood.  

Spring Time

Life is good.  We are enjoying long days and warmer weather.  Aubrey and I try and get out each day for a jog, walk or bike ride as long as the weather holds.  There are finally buds on the trees and even little bits of green grass here and there.  Aubrey is on the verge of crawling--she gets up on her hands and knees and rocks and occasionally takes a step or two forward.  She can now scoot on her belly towards whatever she wants (usually a phone or paper.)  If we hold her hands she loves to walk around the room.  Her steps are huge for such tiny legs and very deliberate.  Brian and I are both enjoying her so much these days.  

Brian wants me to mention a little "incident" we had last week.  We paged the cardiologist because we thought Aubrey had a seizure or something.  What happened was that we were playing and I laid her on the floor next to Brian.  All of a sudden, she started flailing her arms and legs and shaking her head back and forth for a couple of seconds.  I scooped her up and all of a sudden a bunch of yellow snot came out her nostrils.  Apparently what happened was that the snot completely plugged her nose for a moment (babies can't breathe through their mouths.)  It scared us all.  

Brian and I are having our hearts echoed on Thursday to see if either of us has HCM.  We won't find out the results until Monday when we talk to the cardiologist.  Aubrey's next appointment is later this month in Alaska.  The cardiologist here will echo her heart.  June 23 and 24 we have appointments back at Texas Children's.  We have just connected with a family in Texas whose son has a similar diagnosis.  We are really looking forward to learning more from them and having a connection with someone who can really relate to what we are facing.  

A Tooth!

Yesterday we noticed Aubrey is finally cutting a tooth!  People have been telling me she is teething for months and it is finally true!  She doesn't seem to be too bothered by it.  She has been drooling a lot for a few months now, so that isn't really much different either.  We discovered that a really fun new toy is the clear plastic cups they give you on the airplane.  It was double fun for us because we can watch her mouth as she chews and sucks on it.  We thought we saw the beginning of a tooth through the plastic on Friday and then yesterday I felt her gums and there was definitely a sharp little nub.  Guess we'll have to start brushing her tooth soon!

Happy to be Home

We made the long trip home yesterday.  Aubrey did great on the plane rides (Houston to Minneapolis to Anchorage.)  We are so glad to be home.  We were surprised when we landed in a late spring blizzard!  We got about 18 inches of snow yesterday.  So, unfortunately, the heart run was postponed until further notice.  We really had a great time in Texas with Brian's parents.  It was really relaxing and we got lots of quality time as a family.  The more we reflect on all that has gone on over the past two weeks, the more we realize how many things God really orchestrated together for us.  We feel closer to Him and closer to our friends and family and closer to each other than ever before.  We know we most likely have some tough hurdles to cross in the future, but our faith is even greater that God really will carry us through them.  We still have a lot of questions and concerns for our little Aubrey.  We need wisdom about which doctor appointments we need to travel to Texas for, how to tell Aubrey about her heart when the time comes, and more specifically what we should avoid to keep her safe and healthy.  Most of the blood tests are to hopefully rule out some of the metabolic diseases that would be worst scenarios than what we have talked about already.  We will keep praying for her health to remain stable and not to get worse.  

The Longest Day

We woke early to get to Texas Childrens Hospital for our 10am appointment. We got there early and after paperwork was complete and waiting a while Aubrey began her echo cardiogram (ultrasound of the heart.) The technician decided that Aubrey was too squirmy and would have to be sedated. Unfortunately, they didn't have an appointment available for that until 2:00. So after lunch and a walk, we went back to the cardiology unit. While we waited for the echo, Aubrey had her chest x-rayed. She did not like that at all, but recovered quickly. When it was finally our turn, Brian and I took her back to "Tranquility Bay" (where they sedate all the little babies.) They gave her a liquid medicine to help her go to sleep and she gagged it down. Luckily, she fell asleep quickly once I started nursing her. From there it was back to an echo room where her heart was looked at and data collected for over an hour. There were doctors in another room watching the echo as it was going. When the technician thought she was done, she checked with the doctors, and then came back for several more minutes. Aubrey stayed asleep for the entire test and only began to stir at the end. They did an EKG (a quick test,) and took us back to Tranquility Bay for Aubrey to wake and nurse. We were taken to another room to wait for the doctor and the results. After about an hour we were told we needed to do it again. The doctor met us in the hall to explain that this time it wouldn't take as long since they needed to check only one specific thing. They had a doctor do the echo this time and after three trys, they had what they needed and we headed back to the room to wait for the doctor. The doctor spent a lot of time and care explaining Aubrey's condition and answering all of our questions. I'll give some of the facts we learned and then try to explain some of the implications for Aubrey. -First of all, this hospital and this doctor in particular has seen a lot of patients with Hypertropic Cardiomyopathy (HCM), and even in babies as young as Aubrey. This is nothing new to them. -There are four different typs of therapy to treat this condition and of those there are 2 that are used in children. They are medical (drug) therapy and myectomy ( surgery.) Texas Children's is biased (based on a lot of data) towards the least invasive treatment, medical.-Most HCM is caused by a genetic mutation, either passed on from parents or a spontaneous mutation in the child.-Aubrey is asymptomatic at this point, which for this doctor rules out surgery for the time being.-Aubrey's HCM obstructs bloodflow to the Aorta. Aubrey's obstruction is considered moderate (not severe.) Her Mitral valve also has a moderate leak/regurgitation, probably caused by the HCM. The assessment in Alaska did not differentiate the Mitral leakage from the outflow to the Aorta and led the cardiologist to conclude a more severe obstruction. This is the aspect that took so much time here in Texas as well.-Beta Blockers are used to lower blood pressure and decrease stress on the heart. Texas Children's recommends increasing the dose of the medicine as long as it is well tolerated.-The scariest outcome of HCM, one that is talked about most but happens rarely, is sudden death. Based on case histories from Texas Children's, the chances of this happening are very low, especially while she is young (before puberty) and while on medication. -Aubrey needs to have a few more tests (blood and urine) to begin to find the cause of this disease. We will also have our hearts looked at. So with all of that information, what does this look like for the Bucks? Well, first of all, we will be finishing out the week in Houston and then hopefully be back for the Heart Run in Anchorage on Saturday. Aubrey will have the rest of her tests tomorrow, but we won't find out results for quite a while. She will remain on the medicine she is on for the next month when we will have another appointment when dosage will likely increase. We will most likely come back to Texas Children's for this appointment. By then they may have more of an idea what is causing her HCM. Assuming the best case scenerio, she will continue to have heart check-ups monthly, then quarterly, then less frequently if all is stable or better. Her progress will be closely monitored and medication regulated. As a little kid, her life should be fairly normal--though we will probably be a little extra-portective. As she gets older her activity level will have to be limited. Competitive sports will have to be limited to golf or pool or something along those lines. There may be more complications as the months and years go by, but we will have to just take them as they come. There is always the possibility that she may have to have a surgery in the future, but for now, we will be managing this with medicine. The doctor said "We treat the patient, not the echo." They will work with us to give her the best care and the best quality of life. When this day started we had in mind that a heart transplant was our best case scenerio. Due to all the risks that involves, we feel like we recieved really great news today. Even though Aubrey has a very serious condition, and will have some limitations in life, we feel SO blessed. After a week where our minds went down the road of losing our little girl, we feel hope restored. And can you believe, we do not feel disappointed about anything we heard today? There are still many unknowns and many wait-and-sees, and we have no guarentees for her future, but we will continue to trust that God will take care of us. We are so thankful for all of your prayers and support. We have amazing friends and family walking through this with us. God has been carrying us this week. We have experienced the peace that surpasses understanding. We have experienced God ordering events to get us the help we need. We have had to put our daughter fully in His hands and not fear. Thank you for your notes, calls, comments, Bible verses, connections, cleaning, things, and especially for your love for our family.

Scary Part is Over

I will write more later and be much more specific, but for now I just want everyone to know we are feeling really relieved. It was a really long day. We are so thankful that we came here and for the words we heard. We feel like we have a plan now. After a few more tests this week, we should be home for the Heart Run on Saturday!

Safe and Sound!

We arrived in Houston last night around 10pm. It was a relief to get here and get settled at Grandma and Grandpa's house (Brian's parents.) Aubrey did great on the flights and made lots of new friends along the way. She loves to smile at almost anyone who will give her some attention (eye contact and smiles.) We are happy to be in some warm weather and with family. Right now it feels like vacation. We feel really hopeful right now and are filled with peace. Thank you all for all of your encouraging words and prayers. We are so thankful for all of the support we are receiving.

Heading to Houston

Last night a large group of wonderful friends up here
in Alaska came over to pray with us and encourage us. 
It was so uplifting and encouraging and exactly what
we needed last night.  God has been so good to give us
so many supporters in this strange journey.  We can
sure see His hand already working out all of the
details that need to come together to help our little
girl.  We also notice so many ways He has prepared us
for this time.  We are so thankful.  

We leave for Houston at 9am tomorrow morning.  We are
told the best of the best are there to treat what
Aubrey has.  Our Anchorage Cardiologist advised us to
make the trip as soon as possible and we have all of
our appointments scheduled for Tuesday at Texas
Children's hospital.  She will be examined in the
Cardiomyopathy unit there.  Brian's parents live in
Sugar Land (just outside of Houston) so we will be
staying with them for now.  We are planning to enjoy
family time for the weekend before the appointments
begin on Tuesday.  

Brian is taking some time off of work for the time
being.  They have been incredibly accommodating  and
supportive.  We have a round trip ticket scheduled for
a couple of weeks, but we are also prepared to stay as
long as we need to for Aubrey.  Brian could
potentially be transfered to Houston if that is where
we need to be long term.  

We really don't know what God has for our future.  We
are really hoping for the best.  We know He will carry
us through this storm.  We talked to the Cardiologist
about some possible scenarios, most are pretty scary,
but we know God is much bigger than our circumstances
and that He can heal her.  Please keep praying for
us--we know you already are.

Tough News...

Friends and Family

We received some really tough news today.  I am sure
you will have lots of questions--right now we don't
have any answers.  Our hearts are breaking as we watch
our sweet little girl and face a really uncertain
future.  Outwardly everything is perfect.  Her heart
isn't growing right, though.  At her sixth month
doctor visit, we found out she has a heart murmur.  We
made an appointment with a children's cardiologist.
We were all quite shocked by what he saw.  The septum
between her ventricles has grown very thick and is
beginning to obstruct the blood flow to / through her
aortic valve.  This is extremely unusual--especially
because she is so very young, and the fact that it
wasn't detectable for her first few months of life.  
For now she is being put on a medication to lower her
blood pressure.  More tests are needed, but the doctor
wants to do more research before deciding what tests
are most pertinent.  As of right now, our next
appointment is May 15th, unless the cardiologist has
more information for us.

We know that we have a good God, a loving Father, that
is taking care of us and Aubrey Ella as well.  I am
confident that He will meet our needs and carry us
through this future we are facing.  God gave us this
incredible baby girl--and we get to love her and raise
her for as long as He lets us.  For that we are both
thankful and fearful.

Please pray.  Pray for our strength to be the best
parents for Aubrey.  Pray for God to meet us as we
hurt.  Pray for us to become closer together.  Pray we
can face the days ahead with grace and courage.  Pray
for wisdom and clarity for the doctors and that they
would know a way to help her.  Pray that Aubrey can
have a full and wonderful life. Pray for healing. 

I am attaching a link so you can see a drawing of her
condition, Hypertrophic Cardiomyopathy. 

http://images.healthcentersonline.com/heart/images/article/Cardiomyopathy.jpg

Love,
Brian, Julie and Aubrey

Pictures of Aubrey FYI-
http://picasaweb.google.com/bjbuckshots