ROUGH FIRST NIGHT HOME!

Last night was a tough one! Jax did not sleep at all and every time he moved his SAT machine beeped.Tonight i am definitely attaching to his toe instead of his finger.He moves his little hands to much for putting on his finger.He also drooled alot last night.It got so bad even after i suctioned his mouth that i had to put a hand towel under him to catch some of the drool.He also required ALLOT of suctioning in his trach last night.I am exhausted and got like 3 hrs of sleep.Hoping later today he will go to sleep for a few hours so mom can get some rest.Right now he is hooked up to a feed and still wide awake.Hoping a full tummy..fresh diaper and some suctioning and his morning med's will help him get some rest.

Today we are rearranging his bedroom to make room for all his equipment he needs.My son Brian said he would Make a bigger baby changer for Jax!I just need to get the materials for it.This would be awesome as he still uses his changer allot just to big for the one he has.So we are building one for him.I want to put the new one in the bedroom with all his equipment so everything will be close by and Handy when it is needed.I am adding a pic of him.we were waiting for his feed and the discharge papers at the hospital.

Baptism!

AT HOSPITAL!

I arrived at noon here at Childrens Mercy!The nurse called ENT nurse and told them we were here so the Ent nurse came up and had us get everything gatherd that we needed to change clean and care for the trach.She watched to make sure we had everything together and watched us clean and change his trach.She said we did a great job and that we can go home tomorrow.Michael and I are doing all his care tonight and today is the day we get to leave and go home!Michael and I gave Jax a bed bath!We washed ,dried and lotioned him.I had brought pajamas and we put them on him.He smiled and was like my mommy and Daddy are taking care of me.He aslo got to be held today and was so excited and smiled and tried to talk to us.He is such a sweetheart!All these nurses love him to pieces here.He just radiates that sweetness from him.This beautiful innocent child that we are so privalged to raise.We can make until tomorrow and we are outta here.I told Jax he gets to go home tomorrow and he smiled really big.

Viisit!

I missed my husband so much and my baby Jax.I was so excited to see them both today.The whole visit at the hospital Jaxson would not wake up and slept the whole time i was there.The surgeon did take the stitches out and changed the trach.He did great and did not cry at all.They also took his IV out today.He was in process of being moved from PICU while i was there.
Michael and i talked to the chaplain and we had Jaxson Baptized today.As we prayed and he laid there i felt a weight lift .It was like yes he Gods child now and i know he is watching over his sweet boy and loves him just as much as Michael and I do.Jax will get a baptism record he also got a teddy bear,and a teddy bear quilt and a baptism Shaw.I promise i will post pics soon the nurse was sweet enough to take pictures for us.
I was going to stay home tomorrow and celebrate Landens Birthday.The nurse told me that if i came tomorrow and stayed with my husband we could do the 24 hr care then we would be released to go home Thursday.So change of plans...I am going to hospital in morning to get this done so we can get our baby boy home.I don't want to miss Landens Birthday as i missed spending Christmas with him.The party has been switched to Thursday evening so we are home to celebrate.
Michael called me a bit ago and told me Jaxson is now moved out of PICU and into a a room.I am so thrilled me sweet baby is doing well and we will all be home as a family again soon.

REARANGING!

I could not sleep so i thought i would post.I am thinking of ways to rearange Jax and Landens bedroom.I may move him into laundry area...LOTS of room away from actual laundry room.Only because it would be closer to us and because their is more plug ends there which we will need for all of Jaxsons equipment.I need to get this done before Jax comes home.Also need to come up with shelving or drawers or something to store all his supplies we will need in.I already bought a shelf to put all his feeding supplies on.
I hope we can decide soon what we will be able to do to get everything organized and ready for our beautiful son to come home.

ROUGH NITE LAST NIGHT!

Jax had a rough night he was running a fever..not sure how high because Michael did not tell me.He did not sleep at all and was up all night and most of the day today.The Ent's did not change his trach today.Something about staffing issues so Jax did not get moved from PICU.Tomorrow morning is when it is scheduled for the Surgeon and ENT to come in and change his trach.He should then go to a regular room.The kids and I are going tomorrow to visit him.I miss him so much and i miss my husband too.We have not seen much of each other.
I come home to rest and end up more tired and worn out at home then at the hospital.Some family things with my sister came up and it has been run run run.I am also planning Landens Birthday party.His Birthday is Wednesday.I am also hoping that is Jaxson's discharge day from the hospital.Its late i am tired and still need to pack Landens diaper bag and pack a few things to take to Jax .I cant wait to get him home.All his presents are under the Christmas tree waiting for him when he gets home.I am hoping i can cuddle my sweet baby tomorrow.They have not let us hold him until the surgeon changes his trach.6 days not in our arms has been rough we held him everyday and held him a bunch.

another Christmas day Pic!