Phone Call Of The Day!!!!!

I called yesterday morning to see how Liam was doing. He has been throwing up a lot after he eats and has had a TON of tests done to him to try and find out why. So the nurse ran through the usual things and said they finally figured out what was going on. He has a mal-rotation of his belly. I guess his intestines are going the opposite direction around his belly and are twisting. Nothing is obstucted so that is good and they told me what to look for if this happens and what to do. Then she told me that in rounds they said he should be able to come home some time the middle to the end of next week!!!!!!! Of course I started crying, I was soooo excited!!! I had to share :0)

Liam was straped down for his milk scan to see if he had reflux. He didn't like it at first but then they fed him and he fell asleep for most of it. Thank goodness because he had to lay there for an hour. He ended up having a mild case of it.

Kid Tag

Kid Tag:
Ask your child(ren) to answer the questions and type their answers in.


Avery's answers

1. What is something mom always says to you?
clean up your room. (I have yet to see this)

2. What makes mom happy?
when I take care of Lincoln when we are at a play day.

3. What makes mom sad?
hitting Lincoln

4. How does your mom make you laugh?
play a funny game with me.

5. What was your mom like as a child?
I don't know

6. How old is your mom?
15 (Jared you have some explaining to do!)

7. How tall is your mom?
This big!! (Standing on our bed)

8. What is her favorite thing to watch on TV?
cooking shows

9. What does your mom do when you're not around?
clean up the house and see Liam

10. If your mom becomes famous, what will it be for?
a famous dancer.

11. What is your mom really good at?
cleaning up the house and moping the floors and sweeping the floors

12. What is your mom not very good at?
Making a book. (we tried once, obviously it made an impact on her!)

13. What does your mom do for her job?
Taking care of us.

14. What is your mom's favorite food
pasta, I know because you allways make pasta

15. What do you like about your mom?
When you rock me

16. If your mom were a cartoon character, who would she be?
Giselle, because I love her white dress and I have that dress!!!!

17. What do you and your mom do together?
color

18. How are you and your mom the same?
Because we look the same

19. How are you and your mom different?
Because we got different faces

20. How do you know your mom loves you?
Because you allways say that

21. What does your mom like most about your dad?
Taking us to the mall.

22. Where is your mom's favorite place to go?
To see Liam

So Thoughtful

Avery: Mom, if Lincoln eats all your toast then you can have mine.

Me: That's so nice of you Avery, don't you want it?

Avery: I'm not hungry anymore and I just wanted to lick the jelly off anyway.

Me: Wow, thanks Ave!

Bronco Bronco

The kids LOVE to play with Jared!! He is such an awesome dad and of course the kids can't get enough of him. So they made up this game and call it Bronco Bronco. As you can see from the video they love it, and so do all the other kids that get a chance to have a ride!

The past couple of weeks

I thought I would post an update on our cute little family and how we are all doing. First thing is Avery turned 5 in January and Lincoln just turned 3 on Valentines day. My Dad and Carrie were visiting from Nevada and we got them for a whole week!! The kids had so much fun while they were here. Jared just finished up his medicine rotation yesterday and start surgery on Monday. I know he is so excited :( He is doing awesome and we can't believe we are almost finished with our third year of medical school. Liam is doing WONDERFUL!!! As of right now we are just waiting for him to be taking all of his food by mouth, getting rid of his morphine addiction, and he also needs a skeletal scan from head to toe. They think he might have a tethered cord and if so he might have to have another surgery for it. They also just want to scan his whole body just to make sure they don't miss anything. I have had a lot of people wanting to know,s as far as his little body goes, what he can expect in the future and what things look like. He will have his urostomy bag until he is one and then will undergo another surgery to reverse that, he will have his colostomy bag for life. This will mean no baths or showers, swimming etc. unless we can figure out a way to keep his bag dry. He has the scrotum part but not the penis part. Later in his life we will find a plastic surgeon that can construct one for him if he would like. He has an opening that the urine drains out of into his diaper. When he is around 4 or 5 they will see how much bladder control he has and if he doesn't have much they will go and do a bladder neck repair or a sling to fix that and he will have to probably self cath each time he has to go to the bathroom. His cute little bum is about half the size of a normal bum so it looks normal just very tiny and way cute! He has started to smile and try to talk. He is getting so big and loves to cuddle. He is so strong.

Linc and his cake


Lincolns new bike (he rode it all through the house, he was so excited) and birthday catch up from Grandmas and Grandpas!

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We got Liam this very cute and very soft bouncer. Since he is lying down a lot his little back is getting some sore spots so this chair is helping him a lot, plus he LOVES it!!




Liam being weighed, he is almost 12 pounds now! This is about as naked as he can be.


Liam in his new snuggly, Thanks G.G.!!!


Every ones first time holding Liam, except me.





This is about half of his scar, it is healing up very well!


This was yesterday right after he had his pain meds and food. He was out! Liam loves his hands! He has them just a going all the time. He tries to pull out his air and NG tube all the time so we keep socks on them most of the time.




I am sooo in love with this little boy. I cherish every moment I get to spend with him and am so thankful for all that we have been blessed with.

A Long Awaited Update

Sorry I haven't updated for a bit, but our life has been pretty crazy. Since his first surgery he has had another. On January 21st Liam went in for surgery #2 to fix his Omphalocele. Jared and I were able to get to the hospital very early and see him before they took him. His surgery took about 2 and half hours and then he had an hour to recover before we could see him. He has an amazing surgeon who did a great job. They were able to get all of his insides back inside in the one operation. It was pretty tight so we are hoping that it hold together. They had to put these large re-enforcing bands to help it stay together. When they brought the skin together it also brought his colostomy and urostomy mid-line. They had to use the medication that paralyzed him again so he wouldn't move around and chance coming un-done. He was able to come out of traction so that was good. When he woke up he was very sensitive to light,noise, and movement so we were not able to take pictures once he came out of it. It was hard to "start over" again with another surgery but at least we knew what to expect. Every day I would sit by his side and wait to see his sweet little eyes open up again. He had his good days as well as his bad. He is always at risk for UTI's since he has reflux (urine goes back up to the kidneys) and a super pubic catheter still.

Liam just before surgery #2


Yes, there is a baby under all that! This is just after surgery when he was sensitive to light, that is why he has a pillow case over his eyes. He also has a pillow case wraped around his knees to keep his legs together for his hips.


After a while he was a lot less sensitive to light so we got some more pictures. He still has the cutest little feet.





Liam also has a tube called a sump. It sucks the mucus out of his belly, he has decided that he loves to suck on it when he sleeps. I came in to see him one night and heard this clicking sound, I couldn't believe it was him. Bless his heart he is so cute!! Turn the music off so you can hear him sucking, it's the cutest thing ever.


When Jared and I go to the hospital and we don't have anyone to watch the kids we each take one hour to see Liam while the other one stays down stairs with the kids, then we switch. That hour goes by so fast. I never thought I could stare at some one for a full hour, never looking away. Avery is great at making new friends. All the kids that we have met while we wait have been so sweet and all they want to do is play. Yes, Avery is dressed as Alice.


Last Sunday the 8th Liam was ready to meet the kids. He finally was finally off the ventilator and that is what I had been waiting for. I went up first to make sure he was all covered up and was done with his cares. I called Jared and he came up with the kids. They were so excited, I was crying, and Jared so patient. Liam was so aware that night, more so than he has ever been. It was also the first night we got to see him smile! Avery just talked to him and touched his hands and we looked at his feet and we explained what the feeding tube is and does. She even got to give him a kiss.




Liam is doing well. He is our little miracle. He has re-visited the OR once since his 2nd surgery to get a broviac (sp?) placed in his little chest for all his meds that he is on plus other things. He has been poked more than I like to know and gone through more than I like to tell. I know our family is being watched over and I am very thankful for that. I am also thankful for our family and friends who have been here for us. I don't know what we would do without you. Thank you.

Our Sweet Liam

We had our little boy December 30th at 9:42 p.m. He weighed 7.9 lbs. (same as Linc) and was 19 1/4 in. long. They were going to c-section me on Jan. 12th but he just couldn't wait till then. When he was born he had a lot more wrong with him that we didn't know about. He has something called Cloacal exstrophy. It is very rare and non of the Doctors knew what was wrong with him. The surgeon came down and looked at him and knew he had to be transfered to Childrens Hospital as soon as they could. So he had the Omphalocele and then the other included all this. He does not have an anus and the area under the omphalocele was all open and everything there was like cut in half and laid open. His bladder, part of his intestine, and colon were also fused together. The front of his pelvis did not form and was also laying open. His little boy stuff was pretty much not there. They did find his kidney and found that there was an obstruction, but both are working great. They rushed him to childrens and when he was only 10 hours old they performed a 9 hour surgery on him. I obviously had to stay at the hospital and our friends had the kids, Jared went to the hospital. Laurance, Julie, and my mom flew in that afternoon so they could all be here for us and help out. Jareds dad went to the hospital to be with him and my mom and Julie went to get the kids. To make a very long story short about his surgery, It went sooooo well. They were able to completely construct a bladder for him, The made a little "boy part" and were able to get and bring down his testicles. It is pretty small but there. He does not have an anus and there for will have a colostomy bag for the rest of his life. His right kidney is working great and connected to his bladder. The left, has that block, but is working GREAT! It is not connected to his bladder so he has it draining into a bag on his left side. They said they would reconnect it when he was about 1. They were able to seperate all the fused parts and put them back together. They brought his pelvis together and banded it. When he is 1 they will have to operate again to fix this. They then were able to close the opening up, except for the Omphalocele. He has some things wrong with his spine and they wont know what it is until later when they can do some scans. They are not sure if he will ever be able to walk or not yet, but they say he will live a long normal (considering) life. He is mentally all there and so very normal.
Because of his extensive surgery they put him in traction, put him on meds that paralize him as well as a ton of pain and other meds. He is on a ventilator but is starting to take breaths on his own. The traction part is where his legs are bound together and hanging in a 90* angle. They don't want him to move because of his pelvis. Today (jan. 8) they just took him off the meds that paralize him and we are hoping to start to see some movement and eventually he will open his eyes. They hope to put all the Omphalocele back in in about a week or so. He is extreamly swollen from all that he has gone through and plus he can't move.
It has been hard to see him like this, but he has blessed our lives more than he will ever know. Every day I see him I fall deeper and deeper in love with this extraordinary little boy. He is my hero. Thank you sooooo much for all your prayers and support through this difficult time. I will try to post updates often. We love you all.

Liam in Traction and paralyzed

You can see the Omphalocele on his little belly. It has gone down a lot since he was born. When they are able to put it all back in, then they will make him a little belly button.


He has the cutest little toes!!!


Most of his wires and monitors, actually its only about half. He has so many.