Sunday

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!

Memorial Day

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

8 Weeks today!

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

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

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

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

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

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

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

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

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

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

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

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!!!

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

May 3rd still

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

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