Growing...

Little Jacob loves to eat. Eating every two hours now. Four-five ounces. He is going through a growth spurt.  He is cooing and chatting back to you. He is sleeping better at night. Right before we lay him down he will eat five ounces and then wake up around 1-2 am. Then again at 5 or 6 to eat. Then usually he will go back to bed in his swing until the next feeding. 

Here is my favorite picture my mom text me while she was sitting him on Monday. He is such a happy baby. Getting so much love from everyone. 

Here he is napping this morning. When he is napping in the morning you are on the couch napping next to him. I am still tired tho. I need an 8 hour night with no interruptions. He started to rub his face on you and bury it in your arm pit. He likes to fall asleep like this. When you have him on his stomach, he bounces with his legs. Pushes on your thighs. He is a very strong little man. 

First day back at work

Ban I know I haven't posted since Jacob came home but I've been busy with him. Either he is eating, sleeping or crying. Eating is a chore to him. Half the time is sleeping through his feedings. When you want him to burp he doesn't then screams because it hurts his belly. I swear the neighbors probably think I'm hurting him. It's sad. 

I think more of it is his intestines are reworking for him. He crys in pain when he try's to toot or poop. I feel so bad for him. 

Today is my first day back to work. Since Jacob can not go to day care his first year, work helped us with tony and my schedule. Today, tony worked 4am-12 pm. I work 1 pm to 10. So seeing tony will only be in passing. Some of our schedules will be like this.  Hope he takes a nap with tony because it was a long night and no sleep for any of us. 

No daycare for Jacob is because he is more prone to germs with having cf. Bacteria can grow faster in his lungs and put him back in the hospital. They really want to wait till 6 months to give him a flu shot. 

Here he is today holding his paci once again. Sometimes it's ok other times he pulls it out and cries again  

Yesterday we went to the Langer's. He loves staring at people. Here is Jack, my cousin.

Jake, Alex and jack. 

Baby sitter Addison. She loves her cousin. Always wants to help out with him. 

WE ARE GOING HOME!!

Today is the day, Jacob is coming home. We were waiting for the 10th treatment of his antibiotics. Should start it around 3PM and takes 4 hours to complete. Other than that, his belly looks good and he is eating. Well, I should say he loves to eat during the day. At nights, he only eats 2 ounces. He is usually sleeping while eating. We have to wake him up to eat still because they are wanting him to gain weight.  He actually lost weight from last night. As a CF patient, his body doesn't nourish all of what he needs. Thats why we are to give him enzymes to help. So with him eating is a big thing. and continue to gain weight.

 Here is Jake, June 15 when we took him into the ER. The second picture is of him today. He was so sick. I just can't believe that it would happen so fast over night. If you think something is wrong, don't hesitate, take your child to the doctor! If we waited any longer, after surgery, his intestines would have burst. I wouldn't be able to live with myself if something worse happened.

This is dragon breathing treatment. He is tolerating it more. Mixed with saline and Albuterol. This helps with breaking up any mucus in his lungs. He coughs and sneezes during it. 

Today, a nurse who will be coming to our house weekly and change Jake's broviac dressing came in and showed us how to flush his IV line. Showing us how crucial it is to make everything so sterile. Another lady came in and gave us a percussion massager. Said it was covered from insurance. Jake loves it. We have to do this twice a week. On his back, front and sides under arm pits. 

 Yesterday, we had two visitors. Kathyrn from work brought us lunch. Thank you so much! She brought us Olive Garden, soup and salad. Our room reeked of garlic, but that was ok. It was good!

 Here is Jobe feeding Jake. Stared at him the whole time while Jobe sang to him.

 One of our nurses we had during the week, who is obsessed with Jacob, turned on the slushy machine and gave us slushies. We told her the story and felt bad I guess.

Here is another picture of today. Will miss all of the nurses but glad to sleep at home. We have a follow up apt with the surgeons, next week, so hope they will see him progressing and then take out the broviac.

He Loves Visitors

Here we are still in Jake's hospital room. Slushy machine is turned off and we are both bummed. They are so good! I don't want to turn it on because they it is so loud. Our bathroom is right next to the room, you can hear it from the bathroom. Here is a picture of Mr. Jacob at nap time. I brought him a little outfit that buttons in the front so they can still get to his IV. Now he isn't naked.

We had some visitors today, this morning mom came around 9AM so I could go home and get a shower before my hair apt.  Thanks MOM! Jake already loves his Pam'ma. I am blessed to have an awesome aunt who does hair. Thanks JULIE!  She did a Brazilian Blowout on my hair. Hope its not so fuzzy when its dry. I saw Sam from work in the parking garage. He brought his son in for a cancer treatment. I think between Sam and I we know this hospital from one end to another.

Tony came up after work, around 2PM. Mike (Tony's dad) came up and brought up Marion's Pizza. Thanks Mike! So much better than hospital food. Theresa was here too when she got off work.

Around 7PM, my friend Katie, her daughter Brynn and mother, Mamma P came to visit. That was very sweet of them to see Jake. He appreciates all his visitors. He is so loved. A lot of the nurses and doctors say Jake's room is the most popular room with visitors. Even up in the NICU. I tell them he is a celebrity.

Jake is now having his breathing treatment. He gets this four times a day. Then percussions to break up any mucus in his lungs. CF patients have more sticky mucus than usual and leads to respiratory infections if not done. He sometimes tolerates the treatment, or he is screaming on the top of his lungs.

Hospital Observance

While staying here at the hospital, I am very aware with my surroundings. Smells are the top of the list. Elevators are the worst. We now take the stairs. The elevator in the parking garage, if you ever ride it smells like stale french fries and ketchup. When we would get onto an elevator, after someone got off, it always smelled like a mixture of BO and an ashtray. Nasty! People take care of your hygiene! They are the dirtiest of the hospital. Probably never cleaned.

I loved the smell going into the NICU. It was a clean smell, mixed with diapers and baby powder. I know I am weird.

I thought this hospital was smoke free. Every time I leave, I walk over a cigarette butt. On the side walk or in the parking garage. For your health and everyone's health, stop smoking! It makes you smell. Not look cool.

Since I have stayed here, with the little man, for so long, it would be nice if this hospital would have a workout center. For the doctors, patients and parents staying at the hospital. I feel so lazy laying around pumping. Only exercise I get is walking down to the cafeteria.  I know i could probably start being a "mall" walker around the hospital but I don't want people to talk.

The plus side of being here on Tuesday's, it is Chick-fil-a Tuesday. You have to come early. They sell out by 1PM. We experienced that one day and had to have meatloaf.

No new updates about Jake. He is going to be released on Friday. He will leave with his broviac IV in. We will make an apt for doctors 10 days from now, I do believe. Have a check up and see if we still need the broviac IV. Hope we don't need it and he can have it taken out and we don't have to have any more surgeries. This little boy needs to live and have fun outside of the hospital. Mommy and daddy need to go out and have fun in the real world.

No Communication

This morning is looking up for our little man. His surgeon came in and said, oh he looks awesome he can go home today or tomorrow. Maybe tomorrow. He also got mad that Jake still had his foot IV in. He went out to the hall and said, Why does he still have his IV in? I ordered for it to be out last Friday! So Jake's foot IV is out and they stopped his TPN and Lipids. He is now on half feeds (full feeds this evening)

Dr. Bacon came in, the pulmonary dr. She said he will be here until his antibiotics are done. He had a bacteria growing in his lungs/throat. When they did some suction from the ventilator, they did a lab on it and showed the bacterial. But everything looks good now. Just need to finish his 10 day antibiotics. Today is day six. That means we should be leaving by Friday morning.

We could leave tomorrow, but he would need to finish his antibiotics at home. He will be coming home with his broviac catheter IV. We could do it at home. Every 8 hours he will need it and then the nurse would come to our house and change his dressing. The area of giving his antibiotics would need to be sterol. If any germ get into the line could possible have more of an infection or bacterial growth. Not sure if I want to go that direction if anything would happen. I would feel so sad. It is in the heart area. He would be back in the hospital.

This was this morning when he was having his percussions. He loved it. Was so relaxing. He is a ladies man. He had four nurses around his bed. Loving on him and of course doing vitals, taking out IV and his percussions. I told him he had to many ladies in 

his bed.

He loves his new hat. A lady who worked with Amy (Eric's GF) made this hat for him. 

Today Julie and mom came to visit. Brought me My Favorite Muffin. Tony is at work today. Julie wasn't feeling good this past week but really wanted to see Jake. I told her she would have to wear the gown and mask. No germs in this room. If you do come to visit, make sure you wash your hands. Soap and water please!

Julie took this photo. He is now happy he gets to eat food and not pedilite. Pain meds every six hours. Tylenol and motrin. 

Today they are doing work on the hospital. Workers are on the first floor. We are on the third floor. The drilling and hammering started at 7AM and it sounds like they are on the floor under us. It is so loud! It sounds like they are jackhammering. In the little kitchen, we can use on this floor, has a slushy machine. It was broken and Tony really wanted some. I asked the nurse yesterday when it will be fixed. Well today it was fixed. I asked the nurse if i can try it. She said it was for patients only. Really? I will drink it for my son. He would have loved it. Well I just snuck another one! Blue Raspberry. Shhh don't tell. 

The ER has two flavors of slushies. Tony and I got them when we came in back on the 15th. We pay a $200 co pay when we visit the ER, so its our very expensive slushy!

Cranky

Jacob has been up all day besides a 30 min nap. This morning he had his last pedilite and we started him on breast milk. He started at 15 ML, we are going up 5ML every feeding. At 7PM he will have 30 ML. He is starving! Keeps looking for more after his bottle. He knows his paci is a joke. Nothing comes out.

This was him this morning. Wants to know what we are doing every minute of the day. I maybe got a 15 minute nap. Tony came back after work. 

Today, our visitors were the Wessel's. My sister, Sarah and bro-in-law, Jack. They brought us Fusian. Is it bad that we had Fusian three times this week? I don't :) 

Here is Sarah and her nephew. 

Cameron and Savanna came to visit too. This was a therapy dog named, Rocky. St. Bernard mix. He went up to cameron's hips. He was huge.

We have noticed on the weekends this place is dead. Usually this main hall is packed with patients, doctors and nurses.  Tony and i went down to the cafeteria for dinner. Grilled cheese and tomato soup wasn't bad.

Jacob was still awake when we got back. I ask the nurse for a bouncy chair that vibrates. We put this in his bed and now sleeping a little. Wonder if he will sleep in this tonight and myself. I hope! I am exhausted!