Tuesday, June 30, 2009

Jett's Video

Every evening about 10:30pm Jett becomes wide awake and just wants to talk and talk. He is too cute! You can hear him wheezing a bit in the video but that's pretty much his norm when he is excited. Enjoy!

Pictures from home











Here are some pretty cute pics, I also have a great video I'm trying to download. Jett is amazing!! Heading to the GI doctor today and then have pulmonology tomorrow. Next week he will have a barium enema on Monday and then see the surgeon Wednesday. By next week I guess we will probably get a date for Jett's resectioning. It's going to be so hard to bring him back to the hospital.

Thursday, June 25, 2009

A week and two days....

It's been over one week since we brought our little man home. He loves being home and we love having him home. He is more work than I can even express but it's worth it to have him here. I am very lucky that Pj is such a great daddy...I do not know how I would do this on my own. It would be impossible! Each day has gotten a bit easier and we are getting into a routine of tag teaming Jace and Jett and the many many treatements and mediations. The home health nurse has stopped coming each day to hook and unhook the IV nutrition. She now comes only once a week to draw bloodwork and we are doing the care of the central line and nutrition.

Nights are very restful because Jett does not wake to eat b/c he gets his IV nutrition. I think he would sleep 12 hours if we let him. The fact that I can get 7 or more hours of sleep is HUGE. Of course Pj is a night owl so he doesn't go to bed when we put Jett asleep. He probably gets more like 5 hours of sleep.

Jace is a very sweet big bro. Recently he has lost interest in helping out though. Jace is adjusting but has been acting out a bit at times. He wants to be attached to my hip and will not allow Pj to do much for him if I am around. We have heard several times that he does not like us. Breaks my heart b/c I know he feels so torn about having to share his mommy and daddy time with the new little guy! Again, each day seems a bit better.

Still haven't downloaded new pics but I promise...he is a cutie!!

XOXOxoxo
Liz

Thursday, June 18, 2009

Home Sweet Home

It didn't take long for us to figure out Jett would be better off at home instead of the new hospital. So, Tuesday night we brought him home for the first time. After 3 months of watching other parents walk out the door with their babies, it was now our turn.

Since Jett's homecoming we have been incredibly busy. He is on constant IV nutrition and receives a total of 7 nebulizer treatments a day. He also gets a medicine for his liver 4 times a day, mucomyst once a day in his fistula plus the frequent dressing changes, diaper changes and colostomy care. we still try to feed him every 3 hours but unfortunatley he has a nipple aversion so it takes a lot of time and patience to get him to eat even a small amount. Jett's care is a lot of work but we are enjoying every second of having him! It's amazing that once he got home I could actually smell him and enjoy his wonderful baby scent instead of the hospital fumes. He is loving it at home, he seems much more content and relaxed and looks beautiful..... I think it was a great move to come home.

Jace offered his favorite dinkee (blanket) and Rover (his stuffed puppy dog) to Jett the first night. We were amazed b/c we can barely get our hands on them to give them a bath. He has been super sweet but today I think he may be over it. I called his Grandma to come play with him and get some super attention. He needs it!

As you can imagine, we've taken many pictures so I will post those as soon as I get a chance. Thank you for all your prayers and sweet words!

Liz

Saturday, June 13, 2009

Pictures





We are getting accustomed to our new home. We are able to take the boy on walks around the hospital floor in a stroller. Jace likes to push...imagine that. Jett has been doing well, no more poop yet but we keep praying for that! :)
The store Michael's had little "zooms" to assemble and paint for $1. I bought a bunch of them so Jace, daddy and I, (even our neighbor Francie) have been very busy at our house putting these together. We race them down the driveway and in the livingroom. We also have a surprise today for Jace when he gets to the hospital....the Leapster2 Handheld video game. Hopefully this will keep him having fun while we sit and wait for the babe to come home.
Love to all!
Liz

Thursday, June 11, 2009

A new place to call home.....

Where do I begin? It's been a while so this is a long one....

So the rest of last week went well for Jett. His breathing has improved and he is doing all of the normal behaviors of a 2 1/2 month old. He gave me the cutest smile last week which just made all of this nonsense go away for a few moments! He also began nursing once a day again, which I mentioned before makes me smile from ear to ear...I love our time together.

Sunday the catheter to his central line broke so he headed back to surgery on Monday to replace the Broviak line which gives him all of his nutrition. The surgery went fine and he was back to normal quickly.

Yesterday he was moved from Winnie Palmer Hospital, a Mother and Baby Hospital to the hospital next door, Arnold Palmer Hospital. APH is solely for pediatric patients. The team at Winnie Palmer felt like Jett and our family would thrive at APH. He now has a very large private room with it's own bathroom , tv, etc. We are not limited to the amount of visitors we can have in the room which is great when the grandparents are there. The NICU had us sharing a very small room and we could only have a total of 2 people at the bedside and one had to be me or PJ.

From the "family" perspective the move is great. Jace can watch movies, play on a computer, there is a great big Pirate Ship downstairs to play on. There is also a "family room" on the floor that has a huge TV and kitchen. The accomodations are wonderful however we are so nervous b/c now we have all new nurses and staff caring for Jett. We really loved and trusted the NICU staff and getting to know everyone all over is a bit scary. Plus we loved having my friend Erica as his nurse. She was a mess when she transferred him over...she really loves the little guy! That security was so nice, we never had to worry and could get a good night sleep when she was there. The doctors are pretty much the same, the neonatologist no longer follows Jett but the same team of specialists will. Jace loved his brother's new room. We brought some toys and books to read to the baby. Jace loved reading with Jett today and teaching him all of the different animals in the book...it was adorable.

Jett had a bit of poop in his diaper which may mean the blockage has moved. They are putting dye in his fistula tonight to see if anything comes through. It would be great to be able to start conditioning the lower bowel, preparing it for surgery. Right now the plan is to have surgery the second week of July to try and re-attach the intestines. Once the surgeyr is complete and healing begins, we may have a better idea of his long term prognosis. At this point, his lungs are doing well. He receives preventive nebulizer treatments and chest PT several times a day.

I promise to be better with my updates. Luckily there is a computer for family use right there on Jett's floor so it should be a bit easier to find time :)

Thanks for all the love and support!

Liz

Thursday, June 4, 2009

10 weeks today!

This tenth week has been a roller coaster like all the others. Monday we were told that Jett would be coming home in about a week to heal and grow until his next surgery. We had mixed emotions, mostly scared but excited he would be home. The idea of coming home was brief when Tuesday, he stopped breathing and his heart stopped. The doctors do not know why he is having these episodes. This is the 3rd time this has occurred. Pj was holding him when he seemed to choke. The nurse was going to suction his secretions when his body went limp in Pj's arms. They tried to stimulate him to breath and when that didn't work they bagged him. He only needed help for about 10 seconds and then he began breathing on his own again. The drs seem baffled. All of the follow-up blood work and xrays have looked fine. Jett was perfect today, had good awake periods, was breathing fine and ate alright as well. Now we are scared to death to bring him home. He will stay in the hospital for now. Pj was very shaken by the whole thing as you can imagine. He was having a hard time yesterday getting the images out of his mind. He thought he had lost his baby for good for those few short seconds.