Friday, December 9, 2011

Update: Dec 9, 2011



We are doing pretty well here at the Loveless house. We are still doing tons of learning about Lilly, and things we can do to help her. I am trying to meet people that have kids with CP, especially families that have HIE brain injury and CP. Trying to figure out how our life will be in the future. There is a foundation called "United Angels Foundation" here in Utah. It is for all the angels here that have special needs. They had a pizza party, and lots of dessert. I got to meet some great families that I hope will be able to help me understand everything better. They also nominated a physician of the year, therapist, and educator. I nominated Dr. Knochel awhile ago, but he did not get it. SAD! I think he deserves it! I think I will nominate him every year!
But at the party, good ole Santa Clause came. The babies got to meet Santa for the very first time!

For therapy, Lilly is doing very well! I am so proud of her! I think the cooling they did right after her birth will help her a lot. I am so glad they did it! Things still will not come easy for her, nor will she do things fast, but I think she will be able to do some things. But still we are in the waiting game! I hate this waiting game. Everyone tells me that the first year is the hardest. I hope so, cause I hate this right now!


Lilly in O.T with Mary. Mary is trying to strengthen Lilly's core. She is putting pressure on Lilly's lower back.

Mary trying to get Lilly to do more by herself

Lilly trying to do it herself. Lilly's head is not that strong. She can hold it up, but not for long period of time! It flops! She is almost like a newborn because of it. When you hold Lilly and Logan together, you can totally feel the differences!

We went to the Dysphagia Clinic at Primary Childrens on December 7th. We see
Dr. Molly O'Gorman there. She is a good doctor. We put Lilly on some extra fat oil stuff, to try to get her to gain weight! The Dysphagia Clinic keeps an eye on Lilly because of her G tube. Our goal is for Lilly to eat 100% by mouth. It might happen someday. Up to Lilly. But while I was there, I also dropped by the NICU and talked to a social worker. I want to be a "Graduate Parent" to help other families when they find out that their baby has HIE brain damage. They said they currently do not have any parents in their program that has HIE. How sad! I would have loved some more help at the time! I hope I will be able to help a family someday. I also grabbed all of Lilly's hospital records. It is sad to read! How much damage she actually has.

Lilly also has a new nurse now! Our main nurse comes every morning and every evening for about an hour. Her name is Angela. We like Angela. I feel bad, cause I make Angela do everything that I HATE to do. Like makes Lilly take a pacifier, feed her baby food, brush her teeth, stretch Lilly (especially her neck, Lilly REFUSES to turn her head to the left. If it is on her right, she might look. If it is on her left, too bad, she will not look! Angela also help me dress her, bathe her, clean her room, laundry, bottles, etc. She is a great CNA!

On a good note, most nights (I say most, cause it does not include last night.. Bad night). Lilly is starting to sleep through the night!!!!! YAY!!! I started doing a continuous feed through the g tube again all night. She gets about an ounce every hour. And I put an extra heater in her room, and it works! She usually sleeps for 12 hours now! And I am not waking up all night feed her. The stupid machine does it for me! Logan on the other hand, was sleeping through the night, and now is waking up. They like to tag team me! The joys of twins!

Daddy gave Logan his first haircut! It was really long on the sides and very short on top. So I told Rocky to cut it. He looks so much older now. I want them to be babies forever! But it does look good. Logan did not scream or anything. He actually looked like he enjoyed it.



I love having twins! They are so cute together. They love to touch and play together. I know it looks like Logan is trying to take down Lilly, but in this picture he is actually hugging her and trying to kiss her.
I just bought this sippy cup. I am trying to teach Logan to hold his own bottle. I think it will make my life a little easier, when he starts holding it himself!

My sweet Lilly smile! I love her smile!

video
Lilly and Logan loving each other!

Playing together. Logan going at it, grabbing everything, Lilly watching.

I asked my friend, Rachel, to give me some more picture of the birth. She is going to be giving me even more later, and I am trying to find the camera with her getting life flighted, but here are some pictures. Now I am going to warn you, some are pictures of the c-section itself, and then one picture is of Lilly dead, and them doing CPR.









This picture makes me sad! Look how grey she is! I am so glad they had me knocked out for it!

Rocky giving Lilly a blessing before they flew her up to Primary Children's. I think this is a beautiful picture, and the power of the priesthood! I am so glad Rocky hold's the priesthood. Huge blessing come from it, and I think that is a reason Lilly is still with us today!



Mr. Logan



Lilly hanging on for dear life! Literally!



Daddy loves his son!

Logan

Mommy's first time with Logan.

4 comments:

  1. I should have tagged the pictures better. The picture 4 from the bottom of rocky looking over the incubator, that's actually Logan in the nursery waiting to get his bath! :D

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  2. Well, you are great at taking pictures Rachel! You have a gift!

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  3. Such a precious family Emily. Those are some sweet pictures.

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  4. Thank you for continually updating your blog. It's so great to see them growing and changing, and to hear your story as their mother. These little guys are very lucky :)

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