The Past Few Months

Sorry for such a long gap between updates, but things have been anything but boring around here. Ill try to catch you all up. On March 11th Liam came home. We were all soooo excited to bring him home. My Aunt Anita was here with us and thank goodness for that. She was such a help and we miss her more than she knows. Anita with Ave and Liam at Childrens Hospital the day she got here. Liam has the most kissable cheeks! The day Liam came home was such a long one. There was so much I had to learn and do before they would let me take him home. The day before I had to bring in his car seat so they could put him in it for a while to make sure his vitals wouldn't go crazy and he would stop breathing. He passed, thank goodness. I also had to fill all his medicines and bring them in so they could make sure I new how much and when to give them all to him. I had to pass off on infant CPR. I had to take out Liam feeding tube and then put it back in since he was coming home with it (not fun for either of us). I also had to be checked off on changing is ostomy bags. Our case worker had to get us started on all of his follow up appointment with all of his many amzing Dr's that worked on him. Finally the time came for us to unhook him!!! This was pretty emotional for me. Every time I would hold him I couldn't cuddle with him as much as I wanted or go very far from his crib because he had so many "bells and whistles" hooked up to him. The white patch one his chest is where they removed the Broviac. He had a few stitches and now just two little scars from it. Liam in his carseat in the van. The look on his face kills me! The kids were soooo excited to have him home. They wouldn't leave him alone for a second. Avery LOVES to sing to him and Linc has to help with anything and everything. Liam loves to watch these two crazy kids. If Liam makes a sound of any kind, Avery starts singing (it honestly puts him to sleep) and Linc keeps yelling, "mom, Liams crying" until I come into the room. Here are some cute picture of Liam's first little bit at home. Liam had the feeding tube because he lost the "suck, swallow, and breath" instinct that babys have when they are born since he was IV fed for so long. He was eating from a bottle and nursed good, but he still needed the tube. His little tummy could only take about an ounce or two at a time. So he did not sleep very good at all for a long time. One morning Avery had preschool and my amazing friend Heather had come to pick her up. When I came back in the house Liam had pulled his feeding tube out and had the biggest grin on his face!!! He was so proud on himself. I took it off and left it off for the rest of the day since he was starting to eat a little better. I had to put it back in when Jared came home and I cried the whole time I had to do it. He sneezed and coughed and gagged for about 5 min. after I finished so I told Jared I was just going to take it out and leave it out. Liam had an appointment with his pediatrition in 3 days and if he was gaining weight I was going to see if we could just be done with the tube. Thank goodness he was and we said good bye forever to the tube!!! Around March 20 something Julie, my sweet mother in law, came to take the kids to Disney World for a week with all their cousins and Papa. They were soooo excited. During this time I woke up on night with the worst lower left pain I had ever felt!! I finally woke Jared up and it kept getting worse and worse until I was throwing up and could hardly stand. Honestly I thought I was going to die! We went to the ER where they finally put me on some good pain meds and sent me for a CT scan. They sent me home the next day and said I had a bad Kidney infection. Sweet Jared and Liam sat in the ER with me the whole time I was there. I was so glad the kids were not here for all the fun. Well, the kids and Julie came back on Jareds 29th birthday so we had a little celebration! So then about a week later I woke up in the middle of the night with the same pain!!! I woke Jared up and told him it was back and that he should stay home with all the kids and I'll drive myself to the ER since the pain wasn't unbearable yet. Long story short they did the same thing as last time and then sent me home. I went to see my primary care dr. and he just said if the pain returns then to go back to the ER. Well the pain came back of course and I was stuck at home with Liam. Thank goodness I had friends watching the other two kids. When Jared came home we went back to the ER and they admitted me this time with Kidney stones. Poor Jared had missed so much school because me. My mom and grandma flew in the next night to help out with the kids since was in the hospital and Jared couldn't miss any more school. I was so thankful they were there since I ended up in the hospital for four days. They placed a stint in my left side and it was there for a long painful month. So Liam is the happiest baby ever!!!! Here he is with my mom laughing.
We had such a great Easter!!! All the Easter Egg hunts and stories of long ago. We had our own little hunt here in the court yard behind us. Jared hid all the eggs and then let the kids loose! They had soooo much fun. They came back in the house and had to show Liam their baskets. This kid already has so much personality and keeps us smiling every day. So one night Lincoln comes down stairs after we had put them all to bed and says, "Look mom, I'm handsome!" I had to turn my head because I was laughing so hard, he was so dead serious. He is so stinken cute. Avery joined him as soon as she knew we weren't too mad :0) So last week was Jareds spring break. We were soooo ready for a vacation!! We went to Myrtle Beach in South Carolina with some of our friends. We had a condo right on the beach and it was sooooo much fun. I was so sad to see the week end! Ave and I would get up and walk the beach for sea shells and Jared would fly the kite with Linc. I want to go back.









Linc loves flying the kite and how cute is Liam in his beach chair!




They had a great outlet mall so I was able to get the kids some matching outfits. It was sooo much fun to get matching stuff for the boys! On our drive home we stopped at my Aunt kathy's house in North Carolina for the night and took some pictures. I am so lucky to have the family I have. Thanks kathy!!!!!











We love you and miss you and your flat screen in your amazing bathroom!!!

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.