trains

We went to our Railroad Park today and rode the mini trains. We had a great time and this brought back many memories from when I was a kid going to his place and now I get to take my little one and Chris. So much fun.

Artwork and Skunks

Alexandrea's Great Aunt Lillian works a alot with pottery and tile, helped create this with her assitant.

We went to the fair and look what he did

yes your eyes are Correct, hes's holding a skunk

and then ......

Weigh In!

hello

Today we went in to the pedi for a weight check Little Miss Alexandrea weighed in at 10 lbs 12.9 oz. She is doing well so far on the night feedings and gaining a little more rapidly. So far she has managed to pull out her tube though everyday, So we have had to put in in on a daily basis. this is not a fun procedure for mom, daddy or Lexi. I am just thank ul that so far she is drinking enough by bottle that we have not had to worry about tube feeding anything during the day with bolus feeds. Our Pedi Dr C was pleased with her gain so far and hopes we continue on this path. We will meet with him again in a few weeks and again re-evaluate.

A wordless post!

Feeding tube!

Wow what a whirlwind week this has been so far and it is not even over. Sorry for not updating sooner but we have been rather busy and have not alway had access to a computer.

Last week Alexandrea pretty much was refusing to eat, She would normally take 5 oz bottles , but would only drink 2-3 oz, we waited a couple of days just in case she did not feel well, 2 days later, still refusing. We called the pediatrician, who had us bring her in, after some discussion, he placed a call to a pediatric gastro Dr in Portland, who wanted to see her as soon as posssible. We drove to Portland on Sunday, this is not a easy task with a hubby who cannot drive since he is legally blind, a 10 year old who says i'm bored (even with a game boy) and them asking "are we there yet" and of course Alexandrea and having to stop to feed her and figure out a way to pump in private.

The drive was a long drive, lots of traffic, when we got to eugene there was a accident in the southboud lanes, but it driver's gaulk, and slow down, finally got out of that mess only to hit standing traffic at read albany, it took 30 min just to go about 5 miles, finally got going again, for us to see a sign that read "accident ahead 20 miles, mile post 282 expect delays" , so again standing traffic on I5, We were so glad to finally reach the Ronald Mcdonald house where we would be staying.

On to our sweet baby girl Alexandrea, They really do not have clue to why she is not gaining weight like she should, they went ahead and put in a tube for her feedings, since she was not eating well, they adjusted her formula in her breast milk she get to 30 cal (normal breast milk is 20 cal per oz) We have seen numerous specialist including a gastro, neurologist, genetisist, nutrtioninst, speech therapist, cardiologist, family practice to have her evaluated too see if there is anything they feel might be going on, she has had numerous tests,of the test she has had done, all have been normal so far, they do one blood test that she has aomething higher in a certain thin in her white blood count but said that this could be due to a virus , but will have to keep this monitored (she has had a slightly snotty runny nose).

It is so hard to see her go through this and even more frustrating when they have control and she is tube fed and does not gain weight,

So we are hoping for weight gain tomarrow
more to come later

Sweetness

I was looking through some pics, i just love this big smile, ahh it just melts the heart.

here is another sweet pic


rolling over and giving big smiles!!

playing with toys

30 seconds later, sound asleep!!

Vocals

Alexandrea has become very vocal, and even more so since her big bro has been here. She is becoming quite the drama queen and want full attn on her. I have had a hard time capturing on films, as soon as you bring out the camera, she becomes miss serious.

Yesturday morning, she must of had a good dream as she was laughing in her sleep, it was way too cute, but the time I got the camera she was done


here is a video of miss squeally

Big Brother and 4th of July

Alexandrea was not too sure about the life jacket, and not crazy about the pool either








Hello All What a week

we have been pretty busy
Alexandrea has finally been able to meet her big brother Chris. He is visting us from Oklahoma. HS is not too sure what to think about him yet, She give him big smiles but does cry more when she is held by him, but she also I think is having a little stranger anxiety and wants mom or dad to hod her.

For the 4th of July we took Chris to the Redding Water Slides, where he had a blast but boy was it hot, When we left, the car said it was 109 outside, Def toasty.

Hope everyone has A great Week

Double Digits

When we first brought Alexandrea home, we could wrap her up in this blanket and she could not get out, now she is too big, I still can wrap her but by morning her toes are hanging out. Since she has also discovered her feet they are constantly at her mouth. One of her favorite things to do is to pull off her socks and chew on her toes.

I just love this sweet little face

I thought this was too cute how she has her arms place while sitting in her bumbo. She love to see all that is going on around her.

Alexandrea is such a happy baby, We have completed some of the testing (blood work)for why she has continued to grow on the slow side, so far everything has come back normal, We are very happy about this.

Also Aexandrea did have her repeat echocardiogram on her ASD, She was not a happy camper and as I sat there holding my baby girl while they did this test, I still could see the hole. I just knew it, After it was compled we , immediatly met with the pediatric cardiologist, who confirmed what I had just saw. She said it was a moderate sized, and that it would most likely not close on its own and she will eventually need surgery to repair this defect.
Atrial septal defects (ASD) are among the most common types of congenital heart defects. In general the defect is a hole in the wall (septum) between the top two chambers of the heart (atria). There are three common types of ASD's, named in relation to their position in the atrial septum. A physician will identify the type of ASD a patient has and whether associated defects are present.

The Dr said that there are two ways this can be fixed

Surgery
The standard method for closure of atrial septal defects has been open-heart surgery. Surgery requires a heart-lung cardiac bypass machine to allow the heart to be opened and the defect closed — with stitches if it is small, or, if too large, with a patch. This surgery has a very low risk and has been performed for more than 35 years. Minimally invasive incisions are utilized in selected circumstances when surgery for this defect is performed. Long-term survival after repair of this defect is similar to that of a healthy person of the same age.

Nonsurgical Closure
Nonsurgical closure, a relatively new procedure is done in the heart catheterization laboratory and avoids the need for surgery. A patch, usually resembling a small umbrella, is inserted into the damaged area through a small tube, called a catheter. Various other patches are being investigated. Cardiologists at Mayo Clinic are involved in investigational trials for these devices

THey said that Alexandrea is a good canidate for the nonsurgical closure.

Our biggest hurdle though will be Alexandrea's weight, for the non surgical procedure, they would like Alexandrea to be about 30- 33 lbs, they want her to be at least 18 months old but they want to fix it before she enters school.

Alexandrea's is just now at 10 pounds, Yippee she has finally hit double digits and is at 10 lbs. If she is anything like her mama, It will be 5 before she even hits the weight they would like her to be at. They can do the procedure when they are smaller but they just wnat them to be biggger.

Here is also a twist, while they do not feel like the asd is causing her weight issues, it at times can cause poor growth.
So please pray for growth for Alexandrea, Please also pray that this defect asd will close on its own.

much love Becky, Lars and Alexandrea

Picture Friday~

happy 7th month

so sleepy

she has found her feet

Look at Me!

We received this stuffed cow from the Ronald McDonald House when we were there, (The Shriners have a ride every year where they drop off toys for the kids that are in the hospital). It was practically as big as Alexandrea, you can just see her feet , It is amazing to see how much she has grown. She was 3 days short of being one month here.

Now she is here at almost 7 months.

Alexandrea -15 days, this little bear is half her size

I am growing 10 weeks

Look at me! I have grown so big!