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!