Saturday, February 28, 2009

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!


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.

Tuesday, February 10, 2009

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.