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!