Saturday, December 15, 2012

2 month visit..

 I have only managed to get a smiley picture with her tube on, but she's still cute.

 The newness has still not worn off thankfully.  Jacob and Caleb love feeding her a bottle :)

 She has been super spoiled by brothers these last few weeks!
She is doing really well.  At her 2 month visit she weighed 9 obs and 6 oz.  She is in the 30% for head, the 15% for weight, and the 50% for height.  The P.A. just couldn't stop telling me how amazing she is for only being two months old and for having persistent pulmonary hypertension.  We know that it is because of so many prayers in her behalf.  At this point she has qualified for the RSV shot, and is two months old; so we are able to take her "out" as long as no-one touches her or breathes all over her...

Tuesday, December 4, 2012

No Oxygen Durring The Day!!!

Lydia went to the Cardiologist today and got the ok to not have oxygen duruing the day!  We are so excited!

Sunday, December 2, 2012

8 lbs 5 oz and counting...

Lydia is doing great!  She is gaining weight like a champ, she almost has her "rash" all gone, and she is getting cuter every day :)
She will go in on December 4th to see how her heart is doing and see if we can get rid of her oxygen tube.  All the kids are totally in love with her and spoil her rotten -  much to moms sadness. 
She still is not great at sleeping at night, so mom is not functioning on all cylinders but that is normal anyway.





 She doesn't like her oxygen tube, and frequently takes it off somehow...


 Happy Thanksgiving from Lydia :)

Friday, November 9, 2012

Lydia is home and doing good!

For Halloween we went up to the hospital to take pictures with Lydia in her penguin costume.  She was so cute, and we even took all of us back for a family picture with Lydia (a BIG no-no). 




On November 1st we got to bring Lydia home!!!  It was such a great and scary thought. :)   It is so nice to not have our family split in two places, but it is so scary to think that we are responsible for watching her close enough to see any problems.
Lydia went to the pediatrician on Monday the 5th, and he said she looks great! He said her heart sounds "ok" and that her oxygen is good.  She also has put on a whole pound since birth!  That is really good.    So far, she is just a normal baby (with an oxygen tube) that sleeps during the day, is awake at night, and is managing to get all of us to spoil her rotten. :)  Being unable to go out and go places has been a little rough, but we're figuring it out one day at a time... Our biggest accomplishment was getting her to nurse!  She eats like a little piggy! :)  Here are some more fun pictures
 Dad getting her dressed to come home!

 In her car seat ready to go.


 HOME!!!

Tuesday, October 30, 2012

October 12 2012 - October 30 2012

Lydia was born on October 12, 2012 at 12:16 pm.  She weighed 6 lbs. 6 oz and was 20 inches long.  She was a "normal" baby for 24 hours, allowing us to all see her, hold her, take pictures, and fall in love with her. 








After 24 hours her body could no longer compensate for her condition - pulmonary hypertension.  She began to get "sick" very quickly, and we were in a race against life and death. She was admitted to IMC NICU for 24 hours where they diagnosed her condition and began working to help her- with help from the Primary Childrens Cardiologists.  It was there that she received a priesthood blessing from her daddy and a nurse that blessed her to be strong and feel of our love (and other things). 



After the 24 hours the Cardiologist at Primary Childrens Hospital said he needed her there to really help her.  They came and told us that she would be transported to Primary Childrens in an ambulance, and we would see her in about an hour and a half.  We raced home to put away the things from the hospital, pick up new things, and met her there.  We arrived at about the same time and had to wait for her to be stabilized.  When we entered the room she didn't look like our baby...she had received a blood transfusion and a lot of fluid in the ambulance ride and was very swollen and sick looking.  (they later told us they didn't know if she was going to make it when they first got her)


As you can imagine we cried many tears and said many prayers that she would someday be okay.  Just looking at her would cause so many scary thoughts and feelings.  We were not allowed to touch her or talk to her because it would raise her blood pressure too much...

But... After a few days she started to get a little better.  We were able to softly lay our hands on her and whisper to her.  They had to keep her sedated most of the time because she didn't like her inhibation tube.  But after a few more days they took that out to our great relief.

That night Shawn got to hold her for the first time since she had gone into the NICU.  I was home with the other kids and cried so many happy tears after he sent these pictures.


This is about when we started to witness "our miracle".  Lydia began to respond to her medications and was feeling better.  She was able to start getting a little breast milk in her feeding tube, which made mom SOOO happy.  It was AMAZING to see the difference in her...


After a little over a week in Primary Childrens, she hit her plateau... She was feeling better and eating from a bottle, but her heart was not changing any significant amount.  We began to learn the patience that comes from watching a very sick body heal itself.  It was so hard to hear each time that there was no real change in her heart and they had no idea when we would go home.  We did bring the kids in a few time to see her, which was so fun and made us want her home even more.  It was this week that she proved to them that she wanted food, could handle food, and NOW.  She got a bottle from then on, and increased amount every day!







On October 29th 2012, The nurse was standing at the computer waiting to get the results from another echo that would tell us what their plan was from there.  We had been praying so hard and wanting to hear good news, but expected to hear the same news we had received the other times. But, to our surprise the nurse said "No, way.  It says that she has a normal size heart and normal function!"  After a little explanation and a lot of excitement we knew that we had indeed been given a miracle.  They had told us we would not hear those words until she was a least a few months old, maybe even six months! 
The doctors decided to take her off her heart medications and to start weening her off her medications for her lungs.  They said that if everything went "perfect" that we would be home by the end of the week!  It was so exciting and reaffirming that our Heavenly Father knows us, loves us, and was watching over Lydia and us.  He had heard our prayers and the prayers of SO many others and had healed Lydias heart!

So now we wait again to see what she will do... But, we are so hopeful and so excited to see that our lives have been so blessed and we are able to witness a miracle every day. 
It has been such a life changing experience.  We have grown closer as a family, humbled ourselves and received countless amounts of service, prayers, and fasting.  We have met some of the most amazing people on the earth, and have been completely humbled by the stories of other families "living at Primary Childrens".  The spirit truly has become a bigger part of our lives and we will never be the same because of the tender mercies while going through this experience.

Here are some pictures from the last few days....