Oregon Coast

We went to the Oregon Coast this weekend. The weather when we got to the coast on Friday it was fairly nice, but it was very windy, so we did not go down to the water, Friday late night it poured down rain Saturday day was cold, wet and clear in the afternoon but again very windy. Sunday finally cleared enough to venture down to the beach .

loves to be up high

she already loves to watch the water

first time walking in the sand

but it did not last, we tried and again and she just folded up her legs

A water fall we stopped at on our way home

too cool

new words this week

beach, be bu (belly button)

March for Babies

Today was the annual March for babies 2010. We had a great time , and the weather was perfect for the most part, a little chilly if the sun was hiding but overall it was awesome.

17 months

This post is a few is a few days late but lil miss Alexandrea is now 17 months old.


On Sunday April 4th we ended up at her dr's office , where she was diagnosed with rsv.



She did have the rsv shots too, but does not prevent it. It is rare that they get it , but when they receive the shots it can help lessen the the symptoms.






She felt pretty lousy and did not want to eat and did loose some weight, arrg . This is the hardest part, we work so hard to get her to eat and gainwhat little she does for her to loose it so quickly. When she did eat, she had a hard time becuase she was coughing so bad that it came right back up. Our battle with the feeding tube was horrible too, as again she would just cough and gag and throw it up. It was not fun. After a few days she was on the mend and feeling much better .





This morning , I was feeling in her mouth and 3 molars have cut through with 1 more coming.


We keep hoping that once she gets her teeth , that this will help with eating.


She has been doing a little better over the past few days and has finally let me spoon feed her again (hsd refused a spoon since december), but only a few bites, so this is encouraging. She is also starting to eat a few other things to besides just puffs such as yogurt, cottage cheese and shreeded cheese. Her new favorite this are vegie chip straws.


Most of the time though her favorite thing to do is feed the dog.





Her weight gain seems to be at at stand still but now that she is better , and has cut most of her molars , now just maybe she will gain weight.





She still is not walking independently, she loves to walk around though holding onto something like her doll stroller, or the coffee table. I do not think it will be too much longer though. Over this last week she has been much more brave too and has discovered that she can stand in her crib and let go. She is also standing for a few seconds.

Easter

Yesterday, Alexandrea was in her first contest. It is called the baby blossum/bud . There were over 200 babies who completed and about 8 catagories. We entered Alexandrea im the bluest eyes. Alexandrea did not win, but there were so many beautiful babies. Our lil miss was in a cute little sailer dress.



It was taking so long, and we has a funeral to go to, so we ended up leaving early.





She always has cough due to her reflux, but saturday she had more of a cough but by sat night, you could tell she was not feeling well.



On Easter morn we stayed home from church due to our little lady. We, did get her in her dress but you could tel she just did not feel well.

She did love the eggs in her basket. She did not care tht over half of them were empty, She really just enjoyed rolling and banging them.

Checking everything out

Today while taking a nap I went into check on her, I just though it was so cute and how it looked like she was praying


I hope everyone had a wonderful Easter .

May god bless everyone.

Becky, Lars and Alexandrea

park fun

a few weeks ago, we walked to a park that is near our house. It was a beautiful day , slightly chilly when we left though but Alexandrea's favorite thing again is the swing, if she was not smiling, she is busy kicking her feet, I have a feeling it will not be long and she will be able to pump and get her self going.

A compairison Photo

I took this ther other day. Even though she has very slow weight gain she is changing so much. You can see how big and how much she has grown.
first picture is 2 months, and the recent is 16 months.

Guess who's standing?

Our little miss is standing but only for a few seconds and when she feels like it, but when she does she gets so excited. Can you also belive this little one is 16 months?


Sorry for the lack of post, I have just been busy and in a blogging slump.
Alexandrea is doing well for the most part, still gaining very slowly. We have been meeting withe r the feeding clinic, ot and pt and also have a nurse working with us on trying to get her to eat, She is still pretty picky but is slowly starting to eat more.

 

Walking

Alexandrea has decided it is pretty cool to walk behind her doll stroller she got for her birthday. Before now, she would only creep as long as the item she was holding on did not moove.

Happy Valentines Day

Happy Valentines Day!!

Congenital Heart Disease

Congenital Heart Disease is the number one baby killer, according to the Children's Heart Foundation. An estimated 1 in 100 babies are born with CHD. CHD kills more children than all forms of childhood cancer combined.

Awareness can make a difference. Better, yet we can do something. We can make a difference. Just by talking and learning about congenital heart disease. We can work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD. Currently NO test can find every CHD in every infant. But, let's start somewhere. Let's screen every baby with a pulse oximetry test and keep working hard to find new tests and save lives.


When Alexandrea was born 7 weeks early, they listened to her heart, since also being in the NICU, she was constantly being monitered for everything from her blood pressure, her heart beats and breathes per min and even her oxygen levels. Never did they hear a hear murmur and even now at 15 months they are unable to detect one. Until now I had never really though about it, but may be all those times for no reason, her oxygen would all of the sudden dip into the 70's , and then a few min later be back on the high 90's .
No testing was ever done on her heart. Due to my little one being early,and then being diagnosed with possible nec, this is how we learned of Alexandreas ASD.


What is an asd ( atrial septal defect)?
An atrial septal defect is an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria. ASD is a congenital (present at birth) heart defect. As the fetus is growing, something occurs to affect heart development during the first 8 weeks of pregnancy, resulting in an ASD.

Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped out to the body through the aorta.

Arial septal defects occur in 4 percent to 10 percent of all children born with congenital heart disease. For unknown reasons, girls have atrial septal defects twice as often as boys.

to learn more you can go to http://www.lpch.org/diseasehealthinfo/healthlibrary/cardiac/asd.html

Due to Alexandrea's having possible NEC,s he was having daily x rays of her lower abd to watch for any change. During one of these xrays, the x ray tech messed up, He took on xray that went higher up. He took a xray that picture her heart. But this xay, showed something that they did not like. for her hear was slightly enlarged, now I was even more scared. My baby was lying in a isolette, and now may have a heart issue. Within an hour of this xray, they ordered a echo. Shortly there after , they told us that Alexandrea had a hole in her heart, That this would mostly close on hits own but may need to be surgically fixed.

Then due to her nec, they ended up flying her almost 300 miles from home to a higher level nicu and where there were specialists . Our home town nicu did not have any. By late evening they had ruled out nec, but again went back to her heart, they repeated the echo, the hole was a moderate sized . They said it should heal, but we will watch and wait.

When Alexandrea was a ablut 7 months, she had a repeat echo once again, This time the said it will most likely need help to close but we need her bigger, we would like her to be around 30-34 lbs, but wnat to fix before school age, the bigger the better. Well if you know us, This has also been a issue. Alexandrea weighs 14 lbs and some change

What are the symptoms of an atrial septal defect?
Many children have no symptoms and seem healthy. However, if the ASD is large, permitting a large amount of blood to pass through to the right side of the heart, the right atrium, right ventricle, and lungs will become overworked, and symptoms may be noted. The following are the most common symptoms of atrial septal defect. However, each child may experience symptoms differently. Symptoms may include:

child tires easily when playing
fatigue
sweating
rapid breathing
shortness of breath
poor growth


Ok for us, Alexandrea is classic, she pretty much has all the above, but yet the cardiologist says I do not feel her asd is related to her weight issues.

They look at me , how big were you. and just kinda brush me off. We did seek a second opnion, who said I belive some of the wight issues could be realted, but we need her bigger because of how they have to repair this.

surgical repair
Your child's ASD may be repaired surgically in the operating room, or by a cardiac catheterization procedure. The surgical repair is performed under general anesthesia. The defect may be closed with stitches or a special patch.

The cardiac catheterization procedure may also be an option for treatment. During the procedure, the child is sedated and a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin and guided to the inside of the heart. Once the catheter is in the heart, the cardiologist will pass a special device, called a septal occluder, into the open ASD preventing blood from flowing through it. This procedure is still very new. Consult your child's physician for more information.

we are hoping if they do have to repair this they can fix with the cardiac catherization as we rather her not to have open heart surgery. For the cath procdure the smaller they are, the harder it is for them to insert the cath .

Every baby needs to be screened. They have portable pulse ox, We used one after Alexandrea came home. If Alexandrea never hadd possible nec, she may have never been diagnosed.

Please go visit Cora's story, lets get the story out there.

15 Months

My little one turn 15 months today.

Still a tiny lil one but she is equally proprotioned.
She is still just kinda crawling but mainly just scoots around on her bottom, it rather cute.
She is saying about 10 words and can sign about another 8 or so. She mainly babbles though

She is now in a size 3 diaper, while she could still wear size 2, but they were getting a little on the short side from the front to back. Alexandrea i sow for he most part in size 9 monhts, Sh e easily could wear some 3 months and 6 months they are getting too short.