A Tale of Two Brothers

October 12th! ? Really??

2009-10-12T16:19:00.001-07:00

Wow does time fly....I cannot believe we are in October already. I wish I knew where the last 6 months went.

It has been a very long time since I updated the blog but actually not much has been happening. We are slowly going up on Jett's feeds during the day. He has absolutely no interest in taking anything by mouth so we give him everything through his g-tube. He contimues to battle lung infections and has a cough that is lingering. I believe his c-diff, the belly infection, has finally gone away. He has been much more pleasant lately although he does have bad days.

We are hoping to get some relief in the near future, the insurance company has ok'ed us to have a private nurse a few times a week. This should allow me to get out of the house and back into the office a bit. We still go nowhere with Jett because of all the germs going around. BAck and forth from my parents' is about the extent of it so as you can imagine, I'm looking forward to a little socializing.

Pj and I did get out and go to Halloween Horror Nights last week which was a blast. We also got a nursing sitter for Jett so that Pj and I could take Jace to the movies. I ended up curling up on the seat and totally passing out. Pj ended up leaving because the movie was 3D and he got a horrible headache. And that was our family outting...pretty pathetic but we are not giving up!

The plan is to continue to increase Jett's feeds until we can get him off the IV nutrients. We still have a long way to go but are making progress. Developmentally he is doing pretty well considering all he has been through. He can sit up in a bumbo by himself now and is working real hard at rolling over. He also gets his legs up under him when he's on his belly. He laughs and babbles a lot, especially st his big bro who can get a smile from him at anytime!

I have not been able to send THANK YOU cards for everything people have sent and done for me and my family. I am so grateful though and appreciate every prayer, dinner, gift card, present, words of encouragement and can you believe we even had ladies from the church come out and do my yard work??? Thank you from the bottom of my heart for everything!!!

Liz

Update

2009-09-17T17:52:00.000-07:00

Tuesday was the day of appointments for the family. Jett had 3 and Jace had 1. It was a long day but nice to get them all out of the way. Jett is doing fine, he is sounding a bit more congested with some yellow green mucus so he is back on antibiotics. I dont think we will ever get rid of c-diff because just as we get it under control, he is put back on more anitbiotics. He is tolerating his feeds well but we still have a long way to go until he can be off the IV nutrients.

Pj and I are exhausted beyond belief. We joked because we had a babysitter for Jett tonight and discussed getting a hotel room so we could catch up on sleep. We went to dinner instead but we could barely keep our heads off the table. Jett sleeps very poor lately...not really sure why. The day is just too busy to catch up on sleep. He gets a minimum of 9 breathing treatments a day, has 12 meds to be given in his Gtube, not to mention the 4 feedings thru the Gtube, the dressing changes and the central line and the nutrients that run through it. Pj has gone back to work and I dread those evenings by myself. I usually go to my parents although packing up all of the necessities is a chore in itself!

I'm not complaining though b/c it's all worth it to have him home! Hopefully soon we can start eliminating some of the regimen as he tolerates more and more feeds.

Thank you for your thoughts and prayers!

Liz and fam....

2009-09-09T19:12:00.000-07:00

Again this is Nana..

Well...what a blessing today was! Jace celebrated his 4th birthday with Mom, Dad, AND Jett...Everyone at home! Jett came home yesterday evening from the hospital. Last night was a little difficult with Jett waking and stirring a lot during the night. Per Liz, he was a little fussy during the day but when Nana and Pop and Beema and Ampa came to celebrate Jace's birthday, Jett was a pretty happy camper. I took a few pictures of the birthday boy Jace and of Jett. Hope you enjoy them! The last 2 days have really been big days for the family.

Sorry the pics are not so good. The camera has died and the phone doesn't work all that well!!!

2009-09-06T13:40:00.000-07:00

Nana again.... Liz asked that I post a couple of pictures taken with my phone. They are not very clear and Jett was very sleepy and ready for a nap but I told her I would post them.

Jace will be having his big 4th birthday on Wednesday. We are hoping the whole Socie family will be able to celebrate at home together!!!

Jett was moved to a step down unit

2009-09-05T10:58:00.000-07:00

Jett has continued to make baby steps. He's tolerating more and more milk but still not enough to get off the IV nutrients. He has been moved out of the intensive care unit to a regular pediatric floor. The doctors believe we can probably take him home mid week next week. He is such a sweet baby I cannot imagine how happy he will be to get a goodnight sleep at home. He is woke up quite frequesntly. This morning for example at 4am lights were turned on, he was undressed and weighed. Good news is he has begun to gain weight again.

2009-09-02T11:25:00.001-07:00

Hello again...Nana here. Liz and PJ are so busy 24/7 at the hospital it is difficult for them to have the time to put updates on the blog. So I will try to give you some of the news. Jett was introduced to pedialyte early last week and did fine with it. They started very slowly with just 5 cc's every hour. They eventually increased him to 10 cc which he tolerated well. Finally late last week Jett was able to pass mucus and pedialyte all the way through the intestines!!! This was huge! The doctors started him on breast milk very slowly and he is now receiving a little over an ounce of breast milk via the gtube if he will not take it by bottle. Most of what is passing through is breast milk and it does not appear much of it is being absorbed. Jett is loosing weight so the doctors have order enzymes that we hope will help him absorb what little milk he is getting. He is still on TPN (i.v. nutrients) but it is being reduced as milk is increased. The special TNP has arrived from Germany and is being used but no report yet if it has helped his liver.

Bad news is that Jett has tested positive for cdiff again. No treatment for it so far. He does not seem to be in pain. Still no idea when Jett will get to go home again. He is doing lots of "5 month old things". He has given Liz a few belly laughs the last few days. Believe me, it warms Mommy and Daddy's hearts. They are such amazing parents....

Jace has been VERY busy going to school on Tuesday and Thursday morning. When asked if he likes school, you get NO response. If you ask what did you do today in school you get "Nusing"(nothing). Yesterday as Jace and I were having our lunch together, Jace shouted out "days of the week". The lightbulb went off and he remembered they were learning the days of the week. The look on his face was priceless... He makes me smile. He is very understanding about Jett being a sick baby. He is very accepting (most of the time) that Mom and Dad have to spend lots of time at the hospital. He gets to stay with Grandpa and Grandma Socie or Pop and Nana a lot of the time. He is always a pleasure.

We are prayerful that the enzymes will help Jett and that he will be aloowed to come home soon.
Everyone's prayers and thoughts are VERY apprecitated. Please continue them.

Surgery is complete!

2009-08-21T08:40:00.000-07:00

Jett was admitted to the hospital on Monday to get his lungs "tuned up" and ready for surgery for Thursday.
His surgery went well and the results are the best news we've received so far. Basically there was concern that there would not be enough functioning intestine to put back together and absorb enough nutrients to grow and thrive. After letting the intestines heal and grow over the past 5 months, there is now plenty of intestine. The surgeon was able to piece together a few sections of intestine so now he has one long, continuous bowel like anyone else (minus the part they removed in the first surgery). He no longer will be considered to have short gut syndrome.

The recovery will be lengthy because they will introduce food very slowly to make sure all parts of the newly created intestine work. Meanwhile he is still receiving IV nutrients through his central line. During surgery they also placed a G-tube which is a tube that goes from his stomach to the outside of his abdomen. THis will allow us to feed him when he is not interested. The G-tube may be something he has for many years to allow for supplementing his diet during sleep at night. This is a typical treatment for the malabsorption problem from the CF. Most kids with the same genetic mutation require the Gtube throughout adolescence.

THank you to everyone for your thoughts and prayers. We are very thankful for everyone that has been following his recovery and so grateful that he has received such a great prognosis!!

2009-08-15T20:14:00.000-07:00

Hello- This is Nana again...a.k.a. Patty. Liz asked that I give a short update so here goes.

Jett has been home from the hospital now for a little over a week and is doing pretty well. His cough is still persistent but productive so it is difficult to know if it is residual rsv or the cf cough that he will probably have. If Jett stays well, he will return to the hospital on Wednesday and have his resection surgery on Thursday. Still no word about the German TPN for his nutrients. Jett has hardly left his home since getting out of the hospital. Liz and PJ are being very cautious about allowing him to be exposed to anyone or anything this week.

It has been a busy week this past week. Uncle Eric from AZ came to town for a short visit. Unfortunate Aunt Merry and little "sweetheart" Kaleigh Anne were not able to visit this time. We missed them both very much! We did have a family dinner one night with all the local family members accounted for. I have attached a couple of photos. Jace also had a busy week. He started his preschool class this week. His teacher is a a friend of Nana's so we are hoping that will help with the transition.

Please be sure to pray for our little Jett fighter this week and thanks for all the past prayers on Jett's behalf. He definitely is a FIGHTER!!

Update

2009-08-10T10:35:00.001-07:00

Jett came home from the hospital on Thursday night. Our discharge was delayed due to a medicine he was discharged on that needed to be shipped from Kansas. The pharmacies had it locally but our insurance wanted it to come from their specialized pharmacy due to the cost. It didn't make sense to me to have him stay another day in the hospital...you would think that would be more expensive.

Jett has been miserable at home until last night. We finally got a medicine that helped with his coughing and tightening in his chest. He is a new babe today. Finally he is smiley and happy. We meet with surgeons on Wednesday. I am hoping to get surgery scheduled next week before he catches something else. Right now we are living in a bubble with him until we get him put back together!

Tomorrow we will bring the babe home...

2009-08-04T18:41:00.001-07:00

After 11 days in the hospital, Jett will be released from the hospital to come home tomorrow. RSV has been very difficult on his lungs and requires so much effort to breath. The doctors will not perform surgery for a few weeks until his lungs have had a chance to improve. Tonight I am staying at home and will try to catch up on sleep. Pj is staying with the little man so I hope they do all right.

Quick Post

2009-07-27T13:12:00.000-07:00

Jett's been back in the hospital since Friday. He began feeling poor on Wednesday and then developed a low grade fever so we brought him in for evaluation. Somehow the poor baby has RSV again and also has c-dif. He feels terrible and is in pain. We are managing and getting along well this hospitalization. I just dropped Jace at my moms and am on my way to to relieve Pj so he can go to work. Tag team parenting!!!

Friday was supposed to be the surgery to re-connect the boy. I am uncertain at this point if the surgeons will proceed...I would be surprised and I am reluctant to them do it anyhow!

2009-07-19T20:33:00.001-07:00

Sweet pictures of the boys. Good to be home but not without trials. This is Nana filling in for Liz, PJ,Jace and Jett. Pj is busy trying to get in as many hours at work and still be available for Jett, Jace and Liz. Jett is struggling with taking his oral medications and is having upset stomach problems. Liz is concerned he is not getting enough of the medications in his system to do much good.

Liz, Jace and Jett got to go to Pop's house Friday night for Pop's birthday. PJ had to work. Uncle Nick and Aunt Vicky came too and spent lots of time with Jace. A good time was had by all!

Plans are still to reconnect Jett at the end of this month! Keep praying for Jett and the rest of the family! As you can see by Jett's photo, he is a joyful child! Big brother Jace calls Jett "Big Boy" and is very happy to have Jett home from the hospital.

Home Again

2009-07-17T15:37:00.000-07:00

We were able to bring Jett home on Wednesday evening. He is a much happier boy these days! Hopefully we can keep him healthy until his next scheduled surgery on July 31st. The surgeon will be re-attaching his intestines and placing a G-tube which will allow us to put him on a pump that will feed him all night long.

Having him home is great but a lot of work. In addition to all of the meds he was on previously, they have added 2 more that are given every 6 hours. He is a full time job plus!

I have taken a few pics lately and will post them as soon as I find the camera's charger! Ha!

Liz

Monday

2009-07-13T13:44:00.000-07:00

Jett remains in the hospital. He seems to be doing a bit better although at times is uncomfortable. The doctors also found he has a staph infection in his lungs which he is being treated for as well. This hospitalization is more exhausting physically than the NICU. One of us stays with Jett at all times and sleep gets very interupted between the alarms, whistles and nebulizer treaments all night long. Pj and I tag team although he is working in the evenings which only makes things more complicated. We are lucky we have both sets of Grandparents nearby to keep Jace happy. We are hoping to be able to bring Jett home by mid to late week. Surgery will be down the road a few weeks so we will be back here soon.

Back in the hospital...........

2009-07-09T17:07:00.001-07:00

So Jett continued to be very uncomfortable after we had him checked out in the emergency department. I brought him back oTuesday and told the ER doctor I wasn't bringing him home b/c there was something defintiley wrong.

He was admitted and they began running many tests. Come to find out he has "C-diff" a stomach bug that is extremely uncomfortable. They have started him on some meds and it will be a few more days before he starts getting some relief. During our stay he has already required some assistance with breathing again. This time I was in the room when he turned blue and wasn't able to move any air in his lungs. It seemed again that mucus got stuck in his lungs or windpipe. This event of course upgraded us to the "Special Care Unit". He continues to be assisted with some oxygen, mostly for when he is in pain and crying. They are limited on pain meds to use on Jett because a lot of them can cause constipation...the last thing we need is another blockage.

We were supposed to meet with the surgeon this week and discuss putting him back together but that is all on hold until he beats this latest bug. I am not sure how long we will be here, depends on how he responds to the medicines. C diff can be difficult to get rid of, its considered one of the "superbugs" that can be resistant to treatment.

Sunday

2009-07-05T14:53:00.000-07:00

Our 4th of July was spent in the children's ER. For about 4 or 5 days Jett has been having "episodes" lasting up tp 2 1/2 hours of unconsolable crying. It seemed like his belly was really hurting him. So, the Gi doctor told me to bring him in and make sure everything is ok. He was seen immediately and they began running tests. Everything came back ok so we do not know the cause of his distress.
Monday he will go back for an enema study and also be seen by the pulmonolgist again and then Wednesday the surgeon.

Jett's Video

2009-06-30T07:55:00.000-07:00

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

2009-06-30T07:48:00.001-07:00

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.

A week and two days....

2009-06-25T11:56:00.000-07:00

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

Home Sweet Home

2009-06-18T08:05:00.000-07:00

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

Pictures

2009-06-13T08:04:00.000-07:00

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

A new place to call home.....

2009-06-11T19:59:00.001-07:00

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

10 weeks today!

2009-06-04T19:08:00.001-07:00

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.

Sunday

2009-05-31T11:41:00.000-07:00

Jett was officially RSV free on Friday. His breathing continues to be very labored especially when he gets upset. He has had a series of Xrays and more cultures, this time on his sputum. They wanted to see if he had Pneumonia or MRSA in his lungs. All cultures have come out negative thank goodness! We are hoping to have some sort of progress this week. The surgeon and neonatologist are supposed to get together tomorrow and come up with a game plan.

Early this a.m. my mom took my dad to the ER. They admitted him b/c he was having some stomach and side pain. They also ran a series of tests and it was not cardiac in nature...yeah! I believe the word is he had gall stones. My mom's actually on her way home with him now and I will find out more.

I will post more info as I get it.

Love

Liz

Pictures...Yeah!

2009-05-25T19:01:00.001-07:00

Memorial Day

2009-05-25T18:32:00.002-07:00

Good Evening! It has been a few days since I updated the blog.

Our visit with Eric, Merry and kaleigh was great fun. Jace enjoyed almost every second :) I think we exhausted our parents by the time the crew left for Tampa on Friday. We will see them again Sunday when they return from the Bahama Cruise.

Jett misbehaved again, scared all the nurses and stopped breathing Saturday evening. They are not sure exactly what happened but believe he may have choked on thick secretions he's trying to get up from his lungs. He was moved to the more critical unit but has already been moved back. Follow-up blood work and chest X rays were all okay.

We met with a lot of doctors this past week: Surgeon, GI, neonatologist and pulmonologist. They are thinking we can have his surgery sometime early July. He had another study to see if they could clear the lower portion of intestines but were not succesful. The surgeon believes the blockage may be scar tissue although they will continue to try to flush it with mucomyst. The scarred intestine would be removed during his resectioning surgery in July. The doctor did say that the small intestines were a pretty good length. The plan now is to dilate the large colon by doing enemas frequently. The large colon has contracted and is very small so by stretching it now, they will be more successful at resectioning him...they want everything to flow easily.

Hope everyone had a nice Memorial Day!

Love
Liz and Pj

Memorial Day

2009-05-25T18:32:00.001-07:00

8 Weeks today!

2009-05-21T08:20:00.000-07:00

Today is Jett's 8 week birthday. Unbelievable!

So the mucamyst has been started and OMG does he stink!!! The medicine smells like eggs or reclaimed stinky sulfer water! It seems to be moving some mucus out so hopefully this is all he needs!

The facial surgeon came and looked at the mass on his cheek. He underwent a CT scan and MRI to evaluate it. We found out he has what is called a hemangioma, which is an overgrowth of blood vessels. It is a benign tumor and will probably continue to grow until he is 10 months and then will start to shrink. They will not biopsy or remove it because of the risk of bleeding.

We will speak with the Surgeon today and then have a meeting with the rest of the disciplines tomorrow. The meeting is for all the dr.s to discuss and be on the same page.

Jace is having a blast with his cousin Kaleigh! Poor Aunt Merry can't get a break, he wants her to play with him constantly. So much for a relaxing vacation!!

Will post more info when I get it...

Love
Liz

5/19/09

2009-05-19T17:54:00.000-07:00

Uncle Eric and Aunt Merry finally got to see Jett. We met with the GI doctor today and he confirmed that there is more small intestine than they thought. They also found a blockage between his small and large intestine so they are going to start him on mucamyst, to hopefully loosen it. The doctor also said they will start feeding the undigested food from his ostomy to his mucus fistula within a week. They tested for RSV again and he is still testing positive. However he looks like he is feeling much better and his breathing has also gotten better.

Love Liz, Jace, Jett and PJ

Monday the 18th

2009-05-18T14:41:00.001-07:00

So, results are in! The good thing...yes finally something good.....there is much more small intestine attached to the mucus fistula than last reported. This can one day be attached to the rest of the bowel to help for absorption of nutrients.

Bad news...of course, there is no continuity from the small intestine to the large intestine. This means there is some sort of blockage still and we are waiting to find out how to treat this.

We will meet with the gastoenterologists tomorrow and get their take on it. The blockage could be more mucus or even adhesions and scar tissue, at this point we do not know. Mucus can probably be "pushed out" with irrigation and mucomyst but if it's scar tissue it will be removed surgically when they resection him.

Eric, Merry and Kaleigh get in town tonight. We are very excited to see our baby girl. Jace can hardly wait. Today is Eric's Birthday, Nick's was Saturday and Vicky graduated from Law School this weekend. The Eggebrecht clan is a busy group!!!

Still haven't downloaded those adorable pictures.....Here's one from a few weeks ago! He was a sleepy boy during this photo shoot!

XOXOxoxo

May 16th

2009-05-16T18:06:00.000-07:00

I've heard from other parents that the 6th week in the NICU is very difficult. I have to say that this 7th week has been terrible. I am feeling very exhausted and have been down this week. Luckily Pj and I kind of take turns being the mopey, worried to death parent and have each had our days this past week. We have seen so many parents leave the hospital with their babies, I just wish it were our turn. Difference is that those parents will likely not have to see another hospital room for years when I know this is just the beginning for our family.

No word on the test yet except that more mucus has accumulated and did not allow the contrast dye go thru the intestines entirely. I guess this means he will probably get more Mucomyst to help break it up.

I have many cute pictures to download and will try to get them on the blog this weekend.

Jace has missed the last 2 soccer games b/c he didn't want to go. I wasn't going to push him. He is a trooper thru this all and has been giving lots of needed kisses to his mommy. What a little man he is!!!

may 15th

2009-05-15T15:50:00.000-07:00

Hello everybody,

Jett went for his test this a.m. which wiped him out for the day. He was so sleepy he would barely even eat at his 3pm feeding. Hopefully he ate at 6pm or they were going to put the tube down his nose again to feed him. No results from the test yet, probably will not hear anything until Monday. Praying there is a lot of functioning small intestine! Yesterday we discovered a very large mass in his cheek. Doctors believe its probably just a clogged salivary gland and it has shrunk a bit since we found it. Seems like we do not go a day without something coming up!

Jace played hard with Nana and Pop today. He wanted me to share with everyone that he is a frog and Pop is a spider. Unfortunatley the frog got caught in the spider's web and stayed for dinner! :)

Will post the results as soon as we hear!

XOXOxoxo

May 14th

2009-05-14T17:06:00.000-07:00

This week has been just crazy. The ups and downs are so taxing on us all. Today Jett looked really good...his coloring looks much better and he is eating much more vigorously. I hope this means he is getting better. It sounds like they will not re-test him for RSV for about a week so until then he is on isolation precautions. We have to gown and glove just to see our little baby. He is not too little though, last night he weighed 10 lbs 4oz. He actually has lost weight the past day or two. He was up to 10lbs 6 oz.

He has another contrast study on his intestines tomorrow. They are looking to see how much small intestines they can see from another view. We are hoping for lots!!!

We could all use a good night sleep...please pray for good, restful sleep tonight!

Love

Liz

5/12/09

2009-05-12T17:43:00.000-07:00

The finally gave a diagnosis of what has been giving Jett all of the recent problems. It is a virus called RSV ( respitory syncytial virus ). The only reason they found out what the problem was is because @ 6:15 pm they coded and bagged him. After that they ran a viral test and found out almost immediately that it was RSV. The hospital messed up big time after he coded, they didn't call Liz or me. The way we found out is at 12am when i called the nurse to see how he was doing, she told us. As you can imagine i raised holy hell because we were not informed of what happened. i made it known that if he so much as burps too loud that we are called or i will make sure someone is punished. The GI doctor also gave us some bad news about his intestines. We were told after his first surgery that 1/3 of his small intestine was removed by the surgeon. However today the GI doctor thinks that a lot more was removed and that is very bad for the absoration of food and vitamins. The most frustrating thing is that they cant be sure he is missing more than 1/3 or how bad he will be effected. They wont know anything until they reconnect his intestines. The only good thing from that is he will be able to come home until he gets put back together.

monday.....monday

2009-05-11T19:15:00.000-07:00

This past weekend was pretty uneventful for Jett. He continues to get worn out easily and has not bounced back fully from this past event. The nurses believe he would benefit from a blood transfusion but the doctors are not as quick to give blood. His blood count went up a tiny bit this am from the bloodwork last week. Pj and I spent the morning at the blood bank donating our blood just in case he needs a transfusion down the road. I am a match but we are unsure of Pj's blood type so he may or may not be able to use his blood for Jett. If Jett doesn;t use our blood, the bank will give it to someone in need.

Mother's Day was pretty fun. Jace and I went fishing in the afternoon after going to Pj's restaurant for a Mother Day's brunch. Nana and Pop came along at the end of our outting, Pop had the magic bait...hotdogs and feta cheese. He caught 2 fish but Jace wouldn't touch them...he said they were gross!

Hoping this week we will make some progress with feeds. Once we get the okay from GI and Surgeons they will begin "refeeding" the stool from the ostomy to the other opening called the mucus fistula. Then he can hopefully absorb more nutrients and get off the IV nutrition.

Thanks for the sweet messages!

Love Liz

May 9th

2009-05-09T18:57:00.000-07:00

The cultures came back yesterday evening and were negative for any growth which is a very good thing. We were worried the central line was infected which means they would have to take it out. It is commonly referred to as Jett's "life line" so we don't want anything to happen to it. He also pulled out the tube they put in his nose but they didn't replace it b/c he has taken his bottles ok today. Jett's breathing has also improved so whatever was going on hopefully is behind us. I haven't tried nursing him in several days although I may tomorrow if he seems to have the energy he had today.

I love the pictures above. The two of Jace are from Chick-Fil-A, we were going down the slide. He also took pictures of me but I have left those out by no mistake. The one of Jett on the left was from earlier in the week and the other one just cracks me! Jett looks so mad....probably b/c they put that darn tube in his nose again!!!

I hope everyone has a Happy Mother's Day tomorrow!!! Love Liz

May 8th

2009-05-08T07:47:00.000-07:00

Yesterday was exhausting. Jett's breathing worsened over the last two days and he was too tired to eat. His bloodwork shows he is negative for sepsis or an infection on the central line although they will not finalize that for 48 hours. His hematocrit levels are pretty low which may be causing him to breath hard. His blood gases and O2 sats are good which means they don't need to put him on oxygen. He is being fed by an NG tube again so he doesn't have to work so hard to eat. His heartbeat keeps dropping low which is scary. Pj is on his way up to the hospital this morning. Last night when we left the hospital he seemed to have much more relaxed breathing and had states of awakeness. The nurse reported he had a pretty good night and was able to actually eat from a bottle. Cultures are still pending...

keep you posted!

Liz

May 6th

2009-05-06T17:59:00.000-07:00

My girlfriend Erica has been Jett's nurse for several nights. She noticed a change in his behavior and felt he was extra sleepy the night before last. SHe also felt he was working harder to breath than usual. Bloodwork came back this evening showing possible infection and so they are starting antibiotics for precaution until the blood cultures come back in a few days. I am so thankful to have her caring for Jett and keeping a close eye on him.

Our a/c went out yesterday so we are having a sleepover at Nana's until the unit can be looked at tomorrow. What's the saying....When it rains it pours!

XOXOxoxo

May 5th

2009-05-05T18:03:00.000-07:00

Today was a good day for both the boys. Jace got to spend time with Grandma and Grandpa all day and Jett was held all morning by mommy, Nana and Pop. Pj will be going to the hospital this evening.

I met my girlfriend for dinner tonight at Chick-Fil-A. As I was filling her in on the details of Jett's recovery, someone sitting next to us overheard our conversation. She asked me if I had a baby in the NICU and of course I said yes. She says, his name isn't by chance Jett is it? OMG!!! Yes it is! She told me she had praying for him and her entire Sunday school class was as well. I cannot explain how wonderful it is to know that people are thinking and caring and praying for us that don't even know us directly. Turns out, Leann sings with mom at church and was so pleased to hear the good news from Mondy's tests! Thank you to everyone from my closest relatives and friends to those that have just heard of Jett and have decided to pray for a family, going through a difficult time and a baby needing extra love and prayers!

Please let me know if you are following the blog. I love to hear from everyone!!

Good Night
Liz

Great News!!!

2009-05-04T12:45:00.000-07:00

Thank you for your prayers! Jett's test results could not have been any better!!!! His lower intestines were found to be open from top to bottom. He will stay in the hospital longer now but they will start re-feeding the stool from the top portion of his bowel to the lower portion to get more absorption. More importantly it means that once they re-connect his bowels, he has a lot of intestine to work with which leads to more absorption of nutrients.

We couldn't be happier ...thank you again for your thoughts and prayers!!!!Please pray for thanks for this wonderful news!!!

Pictures

2009-05-03T17:32:00.001-07:00

May 3rd still

2009-05-03T17:15:00.000-07:00

The doctors said I can nurse Jett every three hours but unfortunately today I was only at the hospital for one feeding. I absolutely love this time we share together...finally I am able to be his mommy and take part in his care like no once else can!! The past few days I've been able to nurse him twice daily but unfortunately it's just so hard to balance everything. We are trying to get into a routine to help Jace and our lives to get back to normal. I've been going in the morning through his noon feeding and then meet Pj downstairs at 1:30. Jace has had no interest in the hospital so he stays with Pj and then I takeover when he comes to the hospital. Pj spends time with Jett before he goes to work between 4 and 5. He had been going back to the hospital after work around 11 pm or later but he has not gone the last few nights and hopefully getting some rest. Today is our 4 year wedding anniversary, he is at work this evening and Jace and I went on a date with Nana and Pop to Steak n Shake. Pj and I will go on a date later this week!

I hope to download some pics tomorrow and post....he is adorable and getting huge. Last I heard he was 9 lbs 8 oz and that was a few nights ago.

xoxo

liz

May 3

2009-05-03T07:31:00.000-07:00

Hi Everyone!

This past week was one filled with frustration. No changes were made to Jett's diet and it seemed as if we were not making any progress and getting no answers. My social worker finally set up a meeting with the team of doctors that are caring for Jett so we could ask questions and get an idea of what is next.

The meeting was very informative and we found out info that no one had even mentioned before. As I described earlier, Jett's lower intestines seem to be blocked as well. The mucomyst they gave him did help break-up some mucus but it seems like there is still an obstruction. Next week he will undergo more testing which will be crucial to his overall prognosis. If the lower intestines is patent and working, Jett will stay in the hospital longer so they can begin using this portion of his bowel to help absorb nutrients. If the lower intestines is blocked by something like scar tissue or damaged bowel they will probably allow him to come home with the IV nutrients and wait at home until they do surgery to put him back together. It will not be until that time until we know exactly how much bowel he will have and if he can survive with what he ends up with. The doctor did mention that he may be a candidate for a multi-organ transplant if he doesn't have enough functioning bowel. Again, this will not be determined until after his surgery down the road.

So now we know a bit more what we are looking at for the future.It's still a waiting game which is so difficult. We have been waiting to know his outcome since our first ultrasound back in September. Please pray for his little belly to heal well and for the studies next week to show plenty of working bowel.

love to all!

liz

Pictures

2009-04-28T05:40:00.000-07:00

These are from the past 4 or 5 days. Enjoy!

April 27th

2009-04-27T08:27:00.000-07:00

The past few days have been somewhat uneventful. Jett has not been able to increase his oral intake due to the amount of undigested milk he is pooping out. This is expected because he only has a limited surface area that actually absorbs the nutrients before it exits his body. He has been receiving the medication to break-up the blockages in his lower intestines which seems to be working. Last night he weighed 9 lbs...he is a chunky monkey that boy! I was able to give him a sponge bath yesterday and have continued to nurse him once a day. He is such a sweet little guy and he thanks you all for your prayers! Pictures to come.....

Oh....Jace's soccer game followed suit with the last practice and game. His shoes and cleats were removed probably within 10-15 minutes into the game. When he did play, he stayed far from the ball and the other players. It was a great laugh!!!

xo
Liz

today's date...unknown

2009-04-24T18:25:00.000-07:00

Jett has continued to eat well all week long. He is now eating 20 mls (2/3 of an oz) every 3 hours. The doctors also let me nurse him for the first time today. We were somewhat successful although he was a very sleepy baby. I will be able to nurse him once a day until he gets the hang of it. The goal now is to get him off the IV nutrition and on full feeds and unfortunately there is no way to know how much he is getting when I nurse.

His lower bowels (which have yet to be used for digestion) were tested the past few days to see what condition they are in. It seems there is also an obstruction in there as well, so Mucomyst will be given to him to try to push all the built-up mucus and meconium through. It worked for the upper portion of his bowels so we are praying it will work for this too!

Jace has another soccer game tomorrow. Hopefully he will choose to participate. Thursday at practice he got too hot and wanted to go home after about 10-15 minutes. Tonight he seems excited but mostly because his Grandma, Grandpa, Nana, Pop and mom and dad will be there to watch. We will see........downloading more pics tomorrow

love
liz

2009-04-23T05:56:00.000-07:00

Jace and Jett are both doing well. Jace has soccer practice today. Jett had a procedure this morning to see if his lower intestines are blocked. The doctors want to start putting stuff in his large intestine to get it working so when the reconnect the two, they will both be functioning well together. We are getting ready to go to the hospital to see how he did. We will update everyone with the results as soon as we get them. Today is Jetts four week anniversary.

-PJ

My monkeys!

2009-04-20T19:00:00.000-07:00

April 20th....again

2009-04-20T18:44:00.000-07:00

So I guess I got ahead of myself last night and dated my entry as April 20th. Today really is the 20th. The Dr.'s continue increasing the amount of milk Jett receives. He now is getting 12 mls every 3 hours. His weight also continues to increase, tonight he was 8 lbs 9 oz. His output contiues to be steady so until there is a problem, they will continue increasing the feeds.

A pulmonologist who is a CF specialists came by today and spoke with Pj and I. He was very optimistic about the disease and the life expectancy of a baby with CF. It's so nice to hear good news from a doc! He ordered for Jett to begin Physical therapy on his chest. This is a preventive measure to keep his lungs healthy and help drain mucus. The therapist came in when I was there and taught me how to do it. The dr. recommends doing it for 15 minutes a day for now.

We also have a meeting scheduled with the Ostomy nurse this week. She will show us how to care for the ostomy once he comes home. The ostomy is his new and temporary "pooper", it is on the left side of his belly and continuosly drains stool. Because the stool is acidic, there are techniques and specific items they recommend to decrease the skin breakdown and infection around the hole. I am glad they are teaching us things we need to know when we get home....it seems like there may be a light at the end of the tunnel.

Love to All!

Liz

April 20th

2009-04-19T18:20:00.000-07:00

Jett was a pleasant little man again today. During my visit he was awake for most of the time. I gave him a sponge bath and washed his hair and then was able to give him his bottle which is now 10 mls. I spoke with my social worker and she is arranging a meeting with all of the doc's for me. There are so many different specialties involved in Jett's care, we just wanted to know what's next for him and if we are getting close to bringing him home. It seems like he is doing so well and I know he has a long way to go before we bring him home but want to know if they think he's on track to come home in a month or 5 months.

Oh, and last night he weighed 8 lbs 7 oz. He is just amazing, we call him our little FIGHTER JETT!!!

Thank you all for the thoughts, prayers and encouraging words you send our way!!

April 18th

2009-04-18T17:23:00.000-07:00

I have really enjoyed hearing from so many people that are thinking and praying for Jett. I appreciate all of the encouraging and thoughtful words. Many times I receive the messages on my blackberry throughout the day and it's just such a blessing to hear from you all especially when I need some reassurance or a laugh or whatever feeling your messages provoke!

Jett is doing well and has continued eating hs milk like a good boy. They have increased his feeding from 6ml to 7 ml and now 9ml every 3 hours. When we arrived at the hospital today we were so happy to find they removed the NG tube which goes from his nose to his belly. He looks so adorable and very healthy. His weight two nights ago was 8lbs 5 oz. He is a big boy! And to think he was not supposed to be born for another 10 days!! I will download the pics we took of him today without the yucky tube.

Jace had his first soccer game this morning. We laughed a lot, he ran a lot. He seems to enjoy practices more than the game. He is not too into confrontation and "taking" the ball from the other players. In fact, he worked hard not to make contact with the ball at all. As my dad put it.... there's always basketball!
Love
liz

April16th

2009-04-16T18:24:00.000-07:00

Jett had another great day. He is just the happiest baby and it doesn't bother him at all to be messed with by all of the doctors and nurses (and mommy, daddy and jace). He tolerated the pedialyte well so they began feeding him breastmilk today. So far he has had 3 feedings of breastmilk and has done great with it. The nurses measure how much of the milk is absorbed by aspirating the tube going in his belly and so far he has digested all of the milk. He only received a tiny bit of milk during each feed but so far so good!

Big and little brothers

2009-04-15T19:31:00.000-07:00

Video of Jace holding Jett for the first time. Jace was sooooo sweet. Jace was singing, kissing and telling Jett that his big brother loves him very much. It was the cutest thing in the whole world. Just to update everyone they started Jett's feeds again today April 15, 2009. They started him on 5cc of pedialyte every four hours and so far he is doing well with it.

2009-04-15T17:55:00.000-07:00

Jace holding and loving his little brother Jett

Tuesday 4/14/09

2009-04-14T22:28:00.000-07:00

Jett is making great progress today. He is finally having stool pass through him, which means he is one step closer to getting back on mommy's milk. If he can tolerate that it will only be a matter of time before he can come home with his family. Jace also got to hold Jett again today, he is such a good big brother. I will be putting video of that up later today. Keep praying for us all!!!

April 13th

2009-04-13T21:16:00.000-07:00

Today Jace got to hold his little brother for the first time....what a great big bro he is!

Jett is doing well, no real changes in the last few days. He still is not producing stool from his ostomy and therefore will not get any food by mouth. He willl continue to get his nutrients from an I.V. for now. The doctors are hoping to clear his bowel out by starting a new med call mucomyst. It should help break-up the mucus inside of his intestines. We are hoping he can start eating by the end of the week.

I love his smirk

2009-04-11T15:34:00.000-07:00

2009-04-11T15:24:00.000-07:00

April 11, 2009
Jett had another great day. He was visited today by special guests...Grandpa Pat and Grandma Wanda (his Great Greatparents). Wanda held him and he loved it!

I spoke with the GI doctor yesterday and he made the recommendation of eventually putting in a G-tube. This will allow him to get extra nutrients over the night time or whenever he would need additional food. He will probably come home with this and could potentially have it for years. This would be used only when he can tolerate food which currently he is not.

Right now the doctors think there is an obstruction in his bowel from either meconium and excess secretions or possibly just the inflammation of the bowel. We are hoping this will clear on it's own and he will not need an additional surgery to remove the blockage or open the ostomy a bit more. Other than the bowel he is doing excellent. He no longer is receiving antibiotics for his sepsis. My girlfriend is a nurse on his unit and is watching out for him and caring for him during the night hours. It has been wonderful to have Erica there so we can get a goodnight sleep :)

April 10th, 2009

2009-04-10T16:29:00.000-07:00

Jett is doing well, he has been moved from the most critical unit to a less intense unit. We are still waiting for his stomach to heal and the inflammation to go down before they will try feeding him again. He currently gets all of his nutrition from an IV. The surgeon said yesterday it may be a week or two before they try again. His Cystic Fibrosis results finally came back and they have confirmed that he does have it. Although we knew he did, we were hoping for a miracle. It was hard not to be teary eyed yesterday after hearing the news.

Meanwhile, Jace had his first soccer practice and was a star. I’ve never laughed so hard! He was running all over the place…sometimes after a ball but sometimes not! He forgot many times that he wasn’t supposed to use his hands. He was very excited to show off his new shoes and shin guards. The best part was his commentating….Coach would tell them to do something and he would say “ALRIGHT! LET”S GO!” He’d look over at me and say,”I’m going to be the winner mommy!”

Precious Moments!

2009-04-07T22:33:00.000-07:00

April 4th

2009-04-07T22:32:00.000-07:00

Today Jett had to give up mommy's milk. I am not sure why. I do know he is not eliminating like the doctor wanted. He has also lost weight so they have put the tube in his nose and into his stomach to eliminate bile I think. He is back totally on I V nutrition which is hard on his liver. No one said how long it would be before they start him on breast milk again.

Liz was disappointed. She has had an upset tummy for days and thinks she may have the flu... I think she has an upset stomach because she has been through so much and is stressed out. She has not held him yet because of her tummy, just in case she does have the flu.

Please keep up the prayers for Jett, Liz, PJ and Jace.
Love, Patty/Nana

April 1st

2009-04-07T22:28:00.000-07:00

Jett had another great day. He now weighs 7 pounds 7 ounces!! He is improving everyday. Tomorrow, Thursday morning sometime, he will go to surgery and have a central line put in. He will be put back on the ventilator while he is having surgery. It should only take about 1/2 hour to put in. If you get this message tonight or early Thursday, please pray for our little man...

Love, Patty