Saturday, August 11, 2012

Spread the word

We are excited to announce that our LLL bracelets have come in!  They are red in honor of EB awareness and include the words “Little Liam’s Lambs” with a butterfly image.  On the inside is the blog address so you always know how to lead people to Liam’s story.  Bracelets are being sent to those who donate at least $10 through the fundraising site found at the top of the blog (send an email through any of the sites – blog, fundraising, or Facebook, or directly to Erica at to get your bracelets).

Also, there are a couple of other fundraising and awareness events coming up:

August 18, 2012
· Cane Creek Bottom · Blue Mountain, Mississippi
Events include food, drinks, entertainment and PONY RIDES!  Come and help spread the word of Liam’s story and support the family.  Hoping to have bracelets available at the event for donations.

September 29, 2012
· Bumpus Harley Davidson  ·
Murfreesboro, Tennessee
If you ride a motorcycle please be there at 9am for our benefit ride. It will be great and we will get you back in time to see the band and enjoy some food. If you do not ride come out anyway and enjoy our food, drink, and live music performed by Zone Status!!! Bracelets will also be available at the event.  Let’s have a great turnout to support this adorable baby and his amazing family.

Friday, August 10, 2012

Bounce bounce bounce

Another fine day. What did we do today? Eat, poop, pee, eat, poop, pee, and repeat. Oh, but it was also our first day in the Bouncy seat!!!!! He loved it. I took pictures so I will try and post one later! I love just sitting there watching him. I am going to be in trouble when we get home because NOTHING will get done because I am going to just watch him all day!!!! Oh well…


Just further proof there is a higher calling in this struggle. I went to visit Liam’s pediatricians office today to talk to them about Liam and how he is doing and to also see if they want to be part of his fundraiser event next weekend. And what do I find at the front door of the office as I walk in?

Thursday, August 9, 2012

Pure Bliss

It was just me and my two beauties all day at the hospital (daddy went home for some other important stuff).  Besides the 800 poop diapers I had to change this is what my day was...PURE BLISS!

I woke up snuggled next to my little princess and then we got to eat lunch together and then after lunch I sat in a chair holding Liam close to my heart while big sister sat next to me in the chair and we watched some Barbie fairy movie --- heaven couldn't be more perfect than that.

I got some precious snuggle time with both of my beautiful babies and tonight my heart could not be happier or fuller knowing that both of my babies are so loved and so content when they are next to mommy. Life is good when you focus on the wonderful blessings and I definitely have those blessings tenfold!

Such a trooper

My son is such a trooper. Yesterday it was the one physical therapist, the new dermatologist (he wanted to see the progress) and I doing the dressing changes. Liam was sooooooo good. He only really cried on one leg being changed and was just looking around during the rest or just a little fussy. It is still hard to hear him cry during it, since I know he is in pain, but I am so proud of him for being such a little fighter and dealing with all this. 

It only took us about 45 minutes and that was with taking a few pictures and all. So I think everyone is getting the hang of doing it better and quicker as well. His little hands are healing so nicely and he may not need any bandages on them in a few days. I can't wait! So please continue to pray for his quick and painless healing so that he can come home with us all soon and be in mommy and daddy's arms every second of every day.
I don't care if he is spoiled…Look out world!

Tuesday, August 7, 2012

Need to vent!

Day 19 Log of my life in NICU: FIVE huge security guards escorted Steve and a slew of doctors and nurses away from the Plastic Surgery resident who was so rude, arrogant and clueless last week and was supposed to be told to NEVER show up in our room again.  Well, he did…TWICE today! Steve was about to go postal on him (hence the 5 security guards needed).

Then a few hours later…I'm cleaning up puke from Steve back in our room while Chloe is hugging my leg wanting to know why daddy is laying on the bathroom floor, THEN just 30 minutes ago I wake up because I am soaking wet!  You guessed it…Chloe had an accident and PEED all over the bed we were in.  So I get up and start stripping the bed and ask Steve to go downstairs to get more sheets, etc. He comes back to tell me that the lady is bringing them and he is going to walk across the street to the VA hospital because he has tightening in his chest.

UGHHHHHHH why can my life just not be simple? I am past frustration, past scared, past upset, past anger. I am just 100% literally tired of all this crap and just want my baby boy to be healed up so that we can take him home and everyone can just go back to being their normal, regular self.  Whatever the hell that means at this point!!!!!

RANT over- on to day 20 of my life in the NICU.


Steve is back now with anxiety medications.  They just gave him fluids and medications for his stomach, nerves, etc., so he is sleeping now. He will be ok if he can just keep his blood pressure down and anxiety level down.

Doctor evil?

Hmmmmm.....what can I do to these doctors next....insert evil laugh.

Monday, August 6, 2012

Doctor Heart to Heart

Thank you all for following and praying for my beautiful little man. We had another heart to heart with the head doctors, administration, nursing supervisors, etc. today to discuss some more concerns that have arisen in the last few days. They have agreed to give us the nurses we choose (so we told them the ones we wanted and who knows how to follow simple rules). 

After the meeting I think that the doctors and directors knew that we are not kidding and are going to bend over backwards to make Liam the King of that hospital. They all said that he is an exception to every rule so that from now on instead of going by "standard protocol" they are going to do things differently for him (like no more residents, only attending physicians, a set of rules that Steve and I put together and had to approve for his care, etc.)

Also, out of this meeting they are going to be retraining their nurses about certain things that we told them has been happening. So hopefully this is the last heart to heart we have to have with these people because if we have to have another, there is going to be a lawsuit or something!

Anyway, my little guy is gaining weight and pooping like he is competing for an Olympic medal. He is becoming more alert and is getting cuter with each passing day. Hopefully these are the things that we can stay focused on as his wounds heal up. Thank you all for keeping him in your prayers and thinking about him.

Sunday, August 5, 2012

Counting Sheep? Sleeping on it.

Look who is sleeping on his Sheepskin blanket!! Thanks to all that donated.

Saturday, August 4, 2012

Amazing kids

My little man is amazing. I love him more and more every second of every day. My Chloe Grace is also the best 3 year old big sister around. She was helping daddy sterilize baby Liam's room this evening. She is going to be such a big help to mommy whenever we get to take this little munchkin home!!!!

Friday, August 3, 2012

Need to move on out

So, we got a new dermatologist as most of you know, and he flew up a specialist yesterday to take a look at Liam. She was very sweet, helped out a lot, and she was in agreement with us that we need to get the heck out of Lebonheur. Also we had a resident from the plastic surgery group yesterday and an ophthalmologist for his eye issue. ophthalmologist said to wait another 7 days and see what it looks like then.

As for the Plastic Surgeons resident…well he turned out to be a complete jerk! We are firing them tomorrow for so many reasons. He came into the room yesterday and started snapping pictures of Liam without saying a word to us at all.  The nurse popped up and told him he should ask us for permission before he just starts snapping pictures. Well the little @#$%^& had the nerve to turn and look me in the eyes and tell me that he didn’t need our permission to take any pictures of our son! So needless to say he will be fired in the morning.

Um let’s see…caught the nurse yesterday morning trying to give Liam Morphine at 7:30am …about 6 hours before he was due a dose. Just one more reason why we got to get out of the place with him!
The dermatologist is trying to contact a doctor in Nashville that he knows that handles EB patients and has seen a bunch of them to see if we can come to Vanderbilts Hospital with Liam to try and move things along.

The big man is eating really well and is happy in nature other than the dressing changes. They got him a big boy crib today because the doctors were worried he was going to fall out of that little square box they were keeping him in. The lesion on the top of his head has gotten a bit bigger and now he has something developing on his right upper arm. It looks like a whole bunch of small raised dots and we’re treating it as EB. The NICU doc has ordered some skull x-ray as she said it looks like his forehead is too small. I know most of you have seen pictures of the big man by now and I can’t see what they are talking about, but what do I know? We have an early morning meeting with the dermatologist doctors, so I’m going to try to get out of here shortly.  I know several of you have commented on EB docs that you like, so if it’s possible, please send me another private message with your referrals again as I get so many messages a day it’s impossible to find the information.

Thanks again for everything all of you have done for my family we could never thank you guys enough. Good night from Memphis and GOD BLESS.

Hello from Liam

Baby Liam was very alert today. He wanted to say hello to everyone!

Wednesday, August 1, 2012

Straight from Steve 9

Good evening everyone, not going to be a long post. We did get a new neonatologist this morning since all the doctors in the unit do 2 week rotations. On a good note, tomorrow afternoon we are finally getting our consult with the Plastic Surgeons.  We have been waiting for this now for 10 days. No closer to being able to use the sheep skin on his bed yet. This has turned out to be a 7 day conquest, for some reason the hospital thinks that they will not be able to clean his sheep skin to the point that no bacteria will be left on it with only a washing machine.

Also they have started giving Liam some kind of a fancy pacifier type thingy but he’s not crazy about it at all. I think he used it for maybe 30 seconds the whole day, just didn’t care for it. They did go ahead and up his morphine, actually they doubled it just for his dressing changes. Liam did scream his head off still today during changes but only for about 15 minutes of it instead of 1 hour straight.

On somewhat of a disappointing side Liam did start getting a small area on the top of his head where some new lesions are starting to form. I am attaching a picture of it for all to see. We are just hoping and praying that it stays small. He also has what appears to me to be blood shot eyes. Looks just like mine did many a morning when I was much younger after a long night of  But, the NICU doctors think it might be from the birth canal, but I am not sure because I think if that’s the case it’s been 13 days and I would think it would have cleared up by now. Not sure about this one so I will have to do some research and if any of you ladies out there saw this in your kids when they were born let me know how long it lasted.

For the most part, Liam slept the day away very comfortable and was very happy when he was awake for feeding times and let me tell you, if you are not ready with that bottle when he first wakes up he is definitely going to let you know how mad he is! This boy has got a set of lungs on him. Anyway, that’s about all I got for tonight. I think tomorrow will be a better day and hopefully I will have some new information to pass along. As always we thank all of you for listening and spreading the word of Liam’s fight to the rest of the world. Good night once again from Memphis.


Mommy Spotlight 5

Liam was so alert yesterday. He just stared at everything. It broke and warmed my heart yesterday when he we were doing the dressing changes. I was holding him for the entire hour and a half while he was screaming in pain and while that is so heartbreaking, almost the entire time he was holding/squeezing my hand almost like he was saying "Please don't ever let go". I love this little guy and don't think there isn't anything that his momma wouldn't do for him. He is such a strong little guy and I am so proud of him at just 13 days old. He couldn't be more perfect to me!