tag:blogger.com,1999:blog-63444203573320015382024-03-19T06:00:03.058-07:00A Tale of Two BrothersA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-6344420357332001538.post-52992215659848338582009-10-12T16:19:00.001-07:002009-10-12T20:21:50.222-07:00October 12th! ? Really??<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTnUEPuDgczpcetkB5Szo94tSt08PqoS6YW0nTfJBAl1HMXh6DHobbAZ8woUsWcaDV3fFEcAhKU7lFOzv9SC5pHGOuSYR4o83nTpAVmf6erJNVpl_UIgCFlPZrxW98GzgbnmPiqiFvVwQ/s1600-h/jett10.11.09+001.jpg"><img id="BLOGGER_PHOTO_ID_5391919516767126546" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTnUEPuDgczpcetkB5Szo94tSt08PqoS6YW0nTfJBAl1HMXh6DHobbAZ8woUsWcaDV3fFEcAhKU7lFOzv9SC5pHGOuSYR4o83nTpAVmf6erJNVpl_UIgCFlPZrxW98GzgbnmPiqiFvVwQ/s320/jett10.11.09+001.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpWL6BdJsjdSEQS3NJLszzzN3HB23hgQnNqvNH_DXJWjWm1b1wIyzgW9bwwZ2mvcB_oil6iOHtBbvfuwufXLzJVKQBP0sj11jWwFKSrdHqA7ekLUX2pmaXDMxgqswEfxnwXWiL5YuhkO4/s1600-h/jett10.11.09+002.jpg"><img id="BLOGGER_PHOTO_ID_5391919217268962002" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpWL6BdJsjdSEQS3NJLszzzN3HB23hgQnNqvNH_DXJWjWm1b1wIyzgW9bwwZ2mvcB_oil6iOHtBbvfuwufXLzJVKQBP0sj11jWwFKSrdHqA7ekLUX2pmaXDMxgqswEfxnwXWiL5YuhkO4/s320/jett10.11.09+002.jpg" border="0" /></a><br /><br /><div>Wow does time fly....I cannot believe we are in October already. I wish I knew where the last 6 months went.<br /><br />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.<br /><br />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.<br /><br />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!<br /><br />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!<br /><br />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!!!<br /><br />Liz</div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com0tag:blogger.com,1999:blog-6344420357332001538.post-12855659389185477262009-09-17T17:52:00.000-07:002009-09-17T18:03:59.437-07:00UpdateTuesday 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.<br /><br />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!<br /><br />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.<br /><br />Thank you for your thoughts and prayers!<br /><br />Liz and fam....A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-54308063332261325562009-09-09T19:12:00.000-07:002009-09-09T19:25:51.900-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipwz-a1gAh7SQC7QkB58RIR1OOvigolpaCiv7Sq_2GOoFZDHq1ByzAMnONRsaIhPFWPRhWtEHWMuZGW0z25S1wqiFTsLXPVxpDmhGIrvTNdhthroOMSxiMFkxW7Ad_KGUwB1jDHdZFCcM/s1600-h/Sept909+018.jpg"><img id="BLOGGER_PHOTO_ID_5379658791686251506" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipwz-a1gAh7SQC7QkB58RIR1OOvigolpaCiv7Sq_2GOoFZDHq1ByzAMnONRsaIhPFWPRhWtEHWMuZGW0z25S1wqiFTsLXPVxpDmhGIrvTNdhthroOMSxiMFkxW7Ad_KGUwB1jDHdZFCcM/s320/Sept909+018.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu-0VLFwL4rK9qrnfZV08eL3_cdmAppDOxuezFV7ja8GlXfzn42NKWqbo1mdl4oo_Xw28sXBmq7AqM5nXFlJglxxm2maAqT4QcpOz2rGj4wLRpTwlORKfr7rH1IBclZ_rhXGFI-SpsZTw/s1600-h/Sept909+014.jpg"><img id="BLOGGER_PHOTO_ID_5379658496168938034" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu-0VLFwL4rK9qrnfZV08eL3_cdmAppDOxuezFV7ja8GlXfzn42NKWqbo1mdl4oo_Xw28sXBmq7AqM5nXFlJglxxm2maAqT4QcpOz2rGj4wLRpTwlORKfr7rH1IBclZ_rhXGFI-SpsZTw/s320/Sept909+014.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkOy4ryTM8JnaZSzNN5FlUvkqcbVcXCG7cvTzD6gUYz00VThHLjQZGHGkB5XMtLASOeebhtAxmIdYeE9G1XJug6jmyOQdRgCml91fbDsFOrirSnNTyWe64TABUXyoeJPBrJuAdkZUpnjc/s1600-h/Sept909+019.jpg"><img id="BLOGGER_PHOTO_ID_5379658231102498930" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkOy4ryTM8JnaZSzNN5FlUvkqcbVcXCG7cvTzD6gUYz00VThHLjQZGHGkB5XMtLASOeebhtAxmIdYeE9G1XJug6jmyOQdRgCml91fbDsFOrirSnNTyWe64TABUXyoeJPBrJuAdkZUpnjc/s320/Sept909+019.jpg" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUf5rk4uspeBSTGCwUi7ljXoQ_6dQhJEVO4V1MxhaCI_Hr2LKO_5w_7JmsX5dEz-n1BRrjh2ff-AeBBsZ2dlC-uG-HLd7s3_4bwWMW50Z9RjQjTYW-gf6KCvdwqqTeA8k47TB9VnoRKb4/s1600-h/Sept909+003.jpg"><img id="BLOGGER_PHOTO_ID_5379657844924629858" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUf5rk4uspeBSTGCwUi7ljXoQ_6dQhJEVO4V1MxhaCI_Hr2LKO_5w_7JmsX5dEz-n1BRrjh2ff-AeBBsZ2dlC-uG-HLd7s3_4bwWMW50Z9RjQjTYW-gf6KCvdwqqTeA8k47TB9VnoRKb4/s320/Sept909+003.jpg" border="0" /></a><br /><br /><br /><br /><div>Again this is Nana..</div><br /><br /><br /><br /><div>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.</div><div> </div><div>Sorry the pics are not so good. The camera has died and the phone doesn't work all that well!!!</div><div> </div></div></div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-20447953195474657302009-09-06T13:40:00.000-07:002009-09-06T13:45:34.575-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeLucFwHtwK_jo-4HaiVgdG8Lb8qzz3Kw3zYmhXDo6InMrYzepUj2N12h06zRf22zT3NF4i6KlEcv5UBv3rx479RptXHnmD7l1HVWQ1DlRwhbWnIqO53LC_j3RZD3dbGCjWGXSEiQ5aDI/s1600-h/Sept+09+Jett+or+Jace+001.jpg"><img id="BLOGGER_PHOTO_ID_5378458279263895938" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeLucFwHtwK_jo-4HaiVgdG8Lb8qzz3Kw3zYmhXDo6InMrYzepUj2N12h06zRf22zT3NF4i6KlEcv5UBv3rx479RptXHnmD7l1HVWQ1DlRwhbWnIqO53LC_j3RZD3dbGCjWGXSEiQ5aDI/s320/Sept+09+Jett+or+Jace+001.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGTY1rFjsVqzTk-nqNj16DyCM4CBf9oeJTUlfWoMANQa75nleu9cOtowp3WXsali1l3joQJRZl3FJ9IeUvs-QY90jTSVE1388OvMH7j7_4Hu40AHcbODUtS3MmGIMR3ZFnCn9C1C-KLCo/s1600-h/Sept+09+Jett+or+Jace+006.jpg"><img id="BLOGGER_PHOTO_ID_5378458010699914738" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGTY1rFjsVqzTk-nqNj16DyCM4CBf9oeJTUlfWoMANQa75nleu9cOtowp3WXsali1l3joQJRZl3FJ9IeUvs-QY90jTSVE1388OvMH7j7_4Hu40AHcbODUtS3MmGIMR3ZFnCn9C1C-KLCo/s320/Sept+09+Jett+or+Jace+006.jpg" border="0" /></a><br /><br /><div>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.</div><br /><br /><div></div><br /><br /><div>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!!!</div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-66319215990198962732009-09-05T10:58:00.000-07:002009-09-05T11:05:08.786-07:00Jett was moved to a step down unitJett 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.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com0tag:blogger.com,1999:blog-6344420357332001538.post-24530341587079996142009-09-02T11:25:00.001-07:002009-09-02T12:05:42.857-07:00Hello 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. <br /><br />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....<br /><br />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.<br /><br />We are prayerful that the enzymes will help Jett and that he will be aloowed to come home soon. <br />Everyone's prayers and thoughts are VERY apprecitated. Please continue them.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-57214364107794663662009-08-21T08:40:00.000-07:002009-08-21T08:53:45.969-07:00Surgery is complete!Jett was admitted to the hospital on Monday to get his lungs "tuned up" and ready for surgery for Thursday.<br />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.<br /><br />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.<br /><br />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!!A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com5tag:blogger.com,1999:blog-6344420357332001538.post-23468519928041702692009-08-15T20:14:00.000-07:002009-08-15T20:38:31.752-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCW5nS61Bk9opzWCUJwXkeIoFwdfVCt-Wig1JUfMlYgQne4rro8JCi-bDjlBvJQmK32HPbc_mhDgOIEsVgc_jdkmY1_KY0rRJlwHC2Ia6dputdgYezHAaHpUGXb6tZEW4TZQVrcS0i-sM/s1600-h/August+2009+014.jpg"><img id="BLOGGER_PHOTO_ID_5370400481134727618" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 277px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCW5nS61Bk9opzWCUJwXkeIoFwdfVCt-Wig1JUfMlYgQne4rro8JCi-bDjlBvJQmK32HPbc_mhDgOIEsVgc_jdkmY1_KY0rRJlwHC2Ia6dputdgYezHAaHpUGXb6tZEW4TZQVrcS0i-sM/s320/August+2009+014.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigJDLLuz1qZpOns8ANX-gl49mAXQMJWfBtKKMo5bqdHEno8Tqzc8TGPI7DM-u6lGN8HOr1p_un4BQtzKp9MRdDHsaVrKKOrXbzGVrZwDk1xfm_uk7eEVSk9I1l-mhJqC_yHzm9WcIota4/s1600-h/August+2009+013.jpg"><img id="BLOGGER_PHOTO_ID_5370400212121310386" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 291px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigJDLLuz1qZpOns8ANX-gl49mAXQMJWfBtKKMo5bqdHEno8Tqzc8TGPI7DM-u6lGN8HOr1p_un4BQtzKp9MRdDHsaVrKKOrXbzGVrZwDk1xfm_uk7eEVSk9I1l-mhJqC_yHzm9WcIota4/s320/August+2009+013.jpg" border="0" /></a><br /><br /><div>Hello- This is Nana again...a.k.a. Patty. Liz asked that I give a short update so here goes.<br /><br />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.<br /><br />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.<br /><br />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!!</div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com0tag:blogger.com,1999:blog-6344420357332001538.post-69516510427760210202009-08-10T10:35:00.001-07:002009-08-10T10:40:23.666-07:00UpdateJett 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.<br /><br />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!A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-6683954161008666482009-08-04T18:41:00.001-07:002009-08-04T18:47:24.080-07:00Tomorrow we will bring the babe home...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.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com0tag:blogger.com,1999:blog-6344420357332001538.post-62383137015284255612009-07-27T13:12:00.000-07:002009-07-27T13:16:26.074-07:00Quick PostJett'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!!!<br /><br />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!A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-21632700554406348302009-07-19T20:33:00.001-07:002009-07-19T20:53:11.235-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA1a0Ox6yxkNbr3TRRfuh6wKsZwY62HL_fvgfgdV44SK5E2t4Y-3OliIme0AW4jCKCG0dgRzQZz3fjyAltuuT4WgxmqNYy4DJeE-La6s1WRBOtuZU53UAfTKg2R5CEYLU__Q6fkjcIxPk/s1600-h/jett+July+09+021.jpg"><img id="BLOGGER_PHOTO_ID_5360385386347159634" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA1a0Ox6yxkNbr3TRRfuh6wKsZwY62HL_fvgfgdV44SK5E2t4Y-3OliIme0AW4jCKCG0dgRzQZz3fjyAltuuT4WgxmqNYy4DJeE-La6s1WRBOtuZU53UAfTKg2R5CEYLU__Q6fkjcIxPk/s320/jett+July+09+021.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9PF_vgI1ydsKsdrWXgZa1FuShD92YWoy0_BQYy11bRr8_Ad8cUEyGIsFyNahkfFsm1XrwzX3TZJG5vfQ_XZ0vj_Z3r0qOJ7UDxBF1-KKDpe_eoB8vYwbN2k8C7VwPkxVlJzWXKW2iHck/s1600-h/jett+July+09+017.jpg"><img id="BLOGGER_PHOTO_ID_5360385082265320898" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9PF_vgI1ydsKsdrWXgZa1FuShD92YWoy0_BQYy11bRr8_Ad8cUEyGIsFyNahkfFsm1XrwzX3TZJG5vfQ_XZ0vj_Z3r0qOJ7UDxBF1-KKDpe_eoB8vYwbN2k8C7VwPkxVlJzWXKW2iHck/s320/jett+July+09+017.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Mj9sxEpB4Rlkih-tnvVNzN-ZCyjEP2H7iMZVdIttWe2YqyocZPxjP_YlpqeX7JAfywgARg7HokCDwz5TXGw334zHRr_xwEbzljZq8h9kqyxOzAWr9Wxj7PFFCYzPzNEo-A8LJ25uPr8/s1600-h/jett+July+09+020.jpg"><img id="BLOGGER_PHOTO_ID_5360382810451117074" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Mj9sxEpB4Rlkih-tnvVNzN-ZCyjEP2H7iMZVdIttWe2YqyocZPxjP_YlpqeX7JAfywgARg7HokCDwz5TXGw334zHRr_xwEbzljZq8h9kqyxOzAWr9Wxj7PFFCYzPzNEo-A8LJ25uPr8/s320/jett+July+09+020.jpg" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj21cCVkd_9ZwHNMtMds_kIC2zfASDZecpbLFnLtqgqhuYWeNmUKUq7tDUBTV6jy4Bb7ya41AHwMts4XOtX6EDG80EUGEGoQRsAj-18bf8L7epfhuFpYg25M4mKLbC7Mx7pkFV-aDq9kvI/s1600-h/jett+July+09+018.jpg"><img id="BLOGGER_PHOTO_ID_5360382610918639858" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj21cCVkd_9ZwHNMtMds_kIC2zfASDZecpbLFnLtqgqhuYWeNmUKUq7tDUBTV6jy4Bb7ya41AHwMts4XOtX6EDG80EUGEGoQRsAj-18bf8L7epfhuFpYg25M4mKLbC7Mx7pkFV-aDq9kvI/s320/jett+July+09+018.jpg" border="0" /></a><br /><br /><br /><br /><div>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. </div><br /><br /><br /><div>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! </div><br /><br /><br /><div>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.</div></div></div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-17047397397817963232009-07-17T15:37:00.000-07:002009-07-17T15:45:44.583-07:00Home AgainWe 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.<br /><br />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!<br /><br />I have taken a few pics lately and will post them as soon as I find the camera's charger! Ha!<br /><br />LizA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-24980621957959750842009-07-13T13:44:00.000-07:002009-07-13T13:51:33.110-07:00MondayJett 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.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-40954319913389679922009-07-09T17:07:00.001-07:002009-07-09T17:16:43.194-07:00Back in the hospital...........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.<br /><br />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.<br /><br />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.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-64427620121128780692009-07-05T14:53:00.000-07:002009-07-05T14:57:26.445-07:00SundayOur 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.<br />Monday he will go back for an enema study and also be seen by the pulmonolgist again and then Wednesday the surgeon.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-17658499833411556392009-06-30T07:55:00.000-07:002009-06-30T08:36:03.497-07:00Jett's Video<p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyx5D-ACwIYlo9qKKyszYH3_muD7PTek4vd_BzYMp-U6wG50LkViv3EtUE2M8lohBTTrCifV-amecKGbLDKHA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>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! </p>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-27686743076100995252009-06-30T07:48:00.001-07:002009-06-30T07:55:35.177-07:00Pictures from home<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-gGqSypE8hwE1SBr3NbPba_7WHE707abz1B8-ZWTgvLmJ85zXnG8dlod8aQpG3YSp6_DhLOPJ8HUEXfl5nHrUwx7AblkT8coc6vzwY0bXjnGChJKfMG0dUkJmwJ6M3wLORUEU0eA0Fs8/s1600-h/Jett+%40+home+052.jpg"><img id="BLOGGER_PHOTO_ID_5353133871188292882" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-gGqSypE8hwE1SBr3NbPba_7WHE707abz1B8-ZWTgvLmJ85zXnG8dlod8aQpG3YSp6_DhLOPJ8HUEXfl5nHrUwx7AblkT8coc6vzwY0bXjnGChJKfMG0dUkJmwJ6M3wLORUEU0eA0Fs8/s320/Jett+%40+home+052.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9TIHcTUl2V9LYM4QhiwvjJtv_K9hjkhfkoygXgVQqu2hHSFaYaK26J1wgenFBZvf6qFxMi9WoSV7wVLaxxlhFNPPGA5Dw8nl3ys7Ds0XQ-HUAzb6J_scaZDz_-0IbbWwXvrqcBVLH-Q0/s1600-h/Jett+%40+home+005.jpg"><img id="BLOGGER_PHOTO_ID_5353133863334052018" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9TIHcTUl2V9LYM4QhiwvjJtv_K9hjkhfkoygXgVQqu2hHSFaYaK26J1wgenFBZvf6qFxMi9WoSV7wVLaxxlhFNPPGA5Dw8nl3ys7Ds0XQ-HUAzb6J_scaZDz_-0IbbWwXvrqcBVLH-Q0/s320/Jett+%40+home+005.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVkQxflJk8JEQnIJa2OIcsx9If72wnKnu6WED3I4LSNnViDVcY08FgMhOt2DcLyWSkLZ_-0oD0U50m5xsednOYPBdK5P7CIyMeNEwVwCnCHc0ZzwMXojrXTbWPvBe0k6ZgioPG3Of9vqo/s1600-h/Jett+%40+home+038.jpg"><img id="BLOGGER_PHOTO_ID_5353133859018864066" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVkQxflJk8JEQnIJa2OIcsx9If72wnKnu6WED3I4LSNnViDVcY08FgMhOt2DcLyWSkLZ_-0oD0U50m5xsednOYPBdK5P7CIyMeNEwVwCnCHc0ZzwMXojrXTbWPvBe0k6ZgioPG3Of9vqo/s320/Jett+%40+home+038.jpg" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMmMnok1iqAzxPbUyxALE34ys498uURfkkbSKA4g5UmhGA8uBZ5TaOHDzdIS_QtcmrrLZcu48Nc5gFymkvtW-oW3wxLJXXMX2ztlR_bap_qnaiZjeakBZo04zMzw57YmJ3H4QquL00x3w/s1600-h/Jett+%40+home+023.jpg"><img id="BLOGGER_PHOTO_ID_5353133851395992786" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMmMnok1iqAzxPbUyxALE34ys498uURfkkbSKA4g5UmhGA8uBZ5TaOHDzdIS_QtcmrrLZcu48Nc5gFymkvtW-oW3wxLJXXMX2ztlR_bap_qnaiZjeakBZo04zMzw57YmJ3H4QquL00x3w/s320/Jett+%40+home+023.jpg" border="0" /></a><br /><br /><br /><br /><div>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. </div></div></div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-85073926395158917292009-06-25T11:56:00.000-07:002009-06-25T12:15:12.175-07:00A 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.<br /><br />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.<br /><br />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.<br /><br />Still haven't downloaded new pics but I promise...he is a cutie!!<br /><br />XOXOxoxo<br />LizA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-30289550049916154632009-06-18T08:05:00.000-07:002009-06-18T08:19:03.591-07:00Home Sweet HomeIt 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.<br /><br />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.<br /><br />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!<br /><br />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!<br /><br />LizA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com6tag:blogger.com,1999:blog-6344420357332001538.post-66088669077301110922009-06-13T08:04:00.000-07:002009-06-13T08:15:35.404-07:00Pictures<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLIgWBiCp_4L1U6WaSPB_goRX3P-_rjLKKTfaY9agH90j4NLoHTx4uRXb29uG8ww9AWmSGfUdGRUa78YpytHci9jciMzbjyeoyIvZ_hL7wAkl4IFOBn7ykmLZ8V6LKbPsi0hXl2iRCPY/s1600-h/jett+and+as+egg+visit+003.jpg"><img id="BLOGGER_PHOTO_ID_5346828992815011682" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLIgWBiCp_4L1U6WaSPB_goRX3P-_rjLKKTfaY9agH90j4NLoHTx4uRXb29uG8ww9AWmSGfUdGRUa78YpytHci9jciMzbjyeoyIvZ_hL7wAkl4IFOBn7ykmLZ8V6LKbPsi0hXl2iRCPY/s320/jett+and+as+egg+visit+003.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdhIFdXcYifQjPzEfUIm0bqXuslfEk2fPZjElGIxrY2SN0tcHvZ479cadb6OOcuaJiB2qo03qb-kAaq7QzN7IXtOzDUlIzxTf482n9J4brHQUubMXczsFoPYkkajzy7gNf0cSFQIxi21g/s1600-h/jett+and+as+egg+visit+004.jpg"><img id="BLOGGER_PHOTO_ID_5346828989505862114" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdhIFdXcYifQjPzEfUIm0bqXuslfEk2fPZjElGIxrY2SN0tcHvZ479cadb6OOcuaJiB2qo03qb-kAaq7QzN7IXtOzDUlIzxTf482n9J4brHQUubMXczsFoPYkkajzy7gNf0cSFQIxi21g/s320/jett+and+as+egg+visit+004.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfh4qSBhwAlde_-UZH2bpMJaGKBLlYtUo6fQ4XxH2-vk3YXgXk4OXLrEACuKuQBtlxKFQL5E2BxMuDaumoonbUxkpx2nr0RdNOOiyazlphdZfrnY46m4qRNyfTG9tnC3WEtC68xE9ebg/s1600-h/jett+and+as+egg+visit+005.jpg"><img id="BLOGGER_PHOTO_ID_5346828984952631698" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfh4qSBhwAlde_-UZH2bpMJaGKBLlYtUo6fQ4XxH2-vk3YXgXk4OXLrEACuKuQBtlxKFQL5E2BxMuDaumoonbUxkpx2nr0RdNOOiyazlphdZfrnY46m4qRNyfTG9tnC3WEtC68xE9ebg/s320/jett+and+as+egg+visit+005.jpg" border="0" /></a><br />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! :)</div><div> </div><div>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. </div><div> </div><div>Love to all!</div><div> </div><div>Liz</div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-16251089559592112882009-06-11T19:59:00.001-07:002009-06-11T20:31:49.444-07:00A new place to call home.....Where do I begin? It's been a while so this is a long one....<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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 :)<br /><br />Thanks for all the love and support!<br /><br />LizA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-78173245038998487542009-06-04T19:08:00.001-07:002009-06-04T19:21:32.366-07:0010 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.A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com2tag:blogger.com,1999:blog-6344420357332001538.post-8276225351504304392009-05-31T11:41:00.000-07:002009-05-31T11:48:31.647-07:00SundayJett 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.<br /><br />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.<br /><br />I will post more info as I get it.<br /><br />Love<br /><br />LizA Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1tag:blogger.com,1999:blog-6344420357332001538.post-67695511161008840202009-05-25T19:01:00.001-07:002009-05-25T19:10:51.772-07:00Pictures...Yeah!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxZ9fsPznLJQh9RIrPgFdDi0RC5TB9CAGtpptsxWPbR_MNn8U-dMYB2ns5WnqoSEWmftpMg8vtfwhGauILvGGSo6zvV_JkerPQuKW8eGygxMFAyroagHXjRL13bHkGpBBPh5708Vgy1hc/s1600-h/Jett+Newborn+V+026.jpg"><img id="BLOGGER_PHOTO_ID_5339949299004477090" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxZ9fsPznLJQh9RIrPgFdDi0RC5TB9CAGtpptsxWPbR_MNn8U-dMYB2ns5WnqoSEWmftpMg8vtfwhGauILvGGSo6zvV_JkerPQuKW8eGygxMFAyroagHXjRL13bHkGpBBPh5708Vgy1hc/s320/Jett+Newborn+V+026.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbKdefvdttyCOKkwzdY8ZoGQeDoaymjuI756SQvS7xpj9vnoMDLDOZF8be2LfEOiJxujrBlHvFjqB0ZR9PJqgpvzBjrfbUtPw-WTic5okBU-zrXut4YOUP-gZLM4hBqrSjckwskaPFzR0/s1600-h/Jett+Newborn+V+021.jpg"><img id="BLOGGER_PHOTO_ID_5339949292598454370" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbKdefvdttyCOKkwzdY8ZoGQeDoaymjuI756SQvS7xpj9vnoMDLDOZF8be2LfEOiJxujrBlHvFjqB0ZR9PJqgpvzBjrfbUtPw-WTic5okBU-zrXut4YOUP-gZLM4hBqrSjckwskaPFzR0/s320/Jett+Newborn+V+021.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWWEad3mOd0LS1xdvoBlivXWorufL8OELP49eI3-pbwrjhYxF397SgOdhv1vHTRw6oumhtBOu4XMTGyAR8IyuozQMYm9Sczmzb9vTk7u5M0Tbs7L5-_pA5kkAb-NpfESfSenX_I_-wnaQ/s1600-h/Jett+Newborn+V+008.jpg"><img id="BLOGGER_PHOTO_ID_5339949287591363826" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWWEad3mOd0LS1xdvoBlivXWorufL8OELP49eI3-pbwrjhYxF397SgOdhv1vHTRw6oumhtBOu4XMTGyAR8IyuozQMYm9Sczmzb9vTk7u5M0Tbs7L5-_pA5kkAb-NpfESfSenX_I_-wnaQ/s320/Jett+Newborn+V+008.jpg" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbDS0lmBv3y-k2j2Y_3FBAv9R4UY5Dwh8huBqxdoryu0TBhAaecGGxDNu-38gN2Nkys7lv9QQZIpLd3ojRoelOIR1Zw4PXE_VWnouCPZEgygf_13SuGA4tDo2L2Rn1tgZxSULUaHsr1Z8/s1600-h/Jett+Newborn+V+005.jpg"><img id="BLOGGER_PHOTO_ID_5339949276673121778" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbDS0lmBv3y-k2j2Y_3FBAv9R4UY5Dwh8huBqxdoryu0TBhAaecGGxDNu-38gN2Nkys7lv9QQZIpLd3ojRoelOIR1Zw4PXE_VWnouCPZEgygf_13SuGA4tDo2L2Rn1tgZxSULUaHsr1Z8/s320/Jett+Newborn+V+005.jpg" border="0" /></a><br /><br /><br /><br /><div></div></div></div></div>A Tale of Two Brothershttp://www.blogger.com/profile/12512516745329222414noreply@blogger.com1