Here you will find the most current and all past news updates on Baby Justin. Bruce and Celeste have the ability to update this page whenever they have news to send out. With everything that is going on please be patient with them when it comes to the amount of updates that are done. 

You might also see updates from other people from time to time. All news updates by other people have been approved by Bruce & Celeste. 

date: 7/10/2000

time: 8:20:31 PM

news: Hey all, I had sent out an email, but some of you must not be on that list. We've got great news to share! We are pregnant again. Justin now has a little brother or sister to watch over. We are due sometime early March. We have already seen the heartbeat and another ultrasound is scheduled for the 20th. We are very scared, but still wanted to share the good news with those of you who have helped us with Justin. I'm sure he's already filled his new sibling in on how many people loved him and how good people were to his parents!

from: Celeste

date: 5/24/2000

time: 2:48:28 PM

news: I wanted to add another note to Justin's web site. We want to thank everyone for all the love, support and prayers we have felt through this horrible ordeal. I, as Justin's mother want to especially thank those who loved my little boy. You let him and us into your lives for only a short while and I hope this experience lives with you for your entire lifetime. Justin was a special little boy and he should not be forgotten. For those of you who could not come to his funeral I wanted to paint a picture for you. He looked better than he had in months. His tiny casket was only 2 feet long and it was cream with gold swirls on the outside of it. The inside was lined with blue lining and a tiny pillow for his head. We dressed him in a white outfit trimmed in blue. The outfit was a button up shirt and pants and little booties. The shirt was decorated with the classic Pooh reaching up for three white stars. The three stars were also on his pants and on the booties. We had them put a Pooh pacifier in his mouth. I brushed his hair (fuzz) and put a tiny bracelet on his wrist. The bracelet was made of beads with his name spelled out. Inside his casket we put his beloved stuffed animals. He will forever have Stinky the skunk, Bug, Amethyst the Hipo and his first Easter Bunny. There were numerous flower arrangements sent and the whole church smelled so good. The service was wonderful and everything was carried out according to our wishes. On the way to the cemetery we finally brought Justin home. We drove past our house and paused for a moment. Finally, Justin was home. We rode in the Town Car and they put Justin between Bruce and I in the back seat. We each layed our hands on the casket and told Justin he was home. At the cemetery the pastor read a poem and said a prayer. We then released three balloons. One was white with Justin's name on it and the other two were blue, with "Mommy" and "Daddy" written on them. We watched them go up to heaven where Justin is now. I'm sure I saw him reach down and catch them, something for him to keep until we can hold him again. I plan to post several pictures we have of Justin while he was in the hospital. Keep the checking the site for these. Thank you again.

from: celeste

date: 5/18/2000

time: 8:33:00 AM

news: Justin passed away early this morning. We are planning a funeral for Friday afternoon. I think we will have the funeral start at 2:00 pm. It will be at the Fortville Church of the Nazarene. The church is located about one block south of the only stop light in Fortville. The address is 701 South Maple, Fortville, IN 46040. Their phone number is 317-485-6443. We may have an hour of calling before the funeral, I'm not sure yet. Any questions - you can email me or call the church.

from: Celeste

date: 5/16/2000

time: 1:11:16 AM

news: Justin isn't doing very good tonight. He may be on the way down and not be able to come back. His heart rate keeps going down to the 80's from the 120's-130's, and he desat's. Part of the time he turns blue due to lack of oxygen. I can't stomach it when I see him turn blue. I get so sick I feel like I'm gonna pass out. I have to admit I'm not doing very well either. I now hate the medical knowledge we've accumulated over the past three months. It makes my heart shatter into a million pieces because we know how Justin is going to die - we just don't know when. This has to be the hardest part of being a parent. Justin is still so sick and the infection has to be eating him from the inside out. My baby boy doesn't seem to have a chance.

from: Celeste

date: 5/15/2000

time: 2:30:53 AM

news: Well, I really don't know what to say. Justin is still hanging in there, although I believe medically he should be gone by now. I keep asking myself how much more can his little body take. We hold him everyday and feels so good to have him in my arms. He really likes to be held. Last Thursday we thought his time had come to an end. His pressures were dropping so fast I thought I was going to pass out. Dr. Rouse looked in on him and let us know to page him if need be. I think he thought Justin wouldn't make it through the night, let alone through this weekend. Today was Mother's Day, my first one. There's been many times when I thought Justin wouldn't be here on Mother's Day. I'm so happy I got to spend time with him on this special occasion. I don't understand why Justin is still here and I don't know what God's plan is for his life, no matter how short it is. We have told Justin it's ok to go to Jesus and yet he is still here. We were ready to let him go and he wants to stay. I just don't know.

from: Celeste

date: 5/11/2000

time: 12:17:36 AM

news: Well, Justin has stumped everyone again. All of his nurses and doctors are as confused as we are. Dr. Rouse asked us to sleep on the idea of giving Justin a new antibiotic called amphotericin B. Our agreement on Friday included us putting Justin as "do not resucitate" and not to add any further treatment. Bruce and I had come to the difficult decision to let Justin go if that was what God and Justin decided. We felt like that was the best choice for Justin. We love him so much we would rather see him go to Heaven and be safe than to be selfish and keep him here and suffer. It was a very painful decision and I wouldn't expect anyone to understand who hasn't walked in our shoes. We both let go and turned Justin over to God, and it seems like God has given us and Justin some time to spend together. I try to look at each day as an opportunity to be with Justin, not as it could be my last day with him. Each day is a blessing, and each day I think I'm taught a new lesson about life. We are scared to expect too much from Justin's small improvements, but still we are expecting a miracle could happen. Each day is filled with more difficult decisions and trying times. We are ready to pull our hair out because we don't know what we should do. We and the doctors have become - more or less - equal partners in Justin's care. We still rely on their medical expertise, but I rely just as much on my "gut feelings". I'm not afraid to question any doctor's decision and feel I have the right to know why they chose certain actions. We don't know if the antibiotic will help Justin or hurt him more. Please pray for wisdom for us and the doctors.

from: Celeste

date: 5/10/2000

time: 11:42:04 AM

news: Two new pictures of Justin have been added to the site. Also, last night he had to be moved to a new room. His room started to resemble a swimming pool after the rain came in. He is in a smaller room at the other end of the unit. He seems to like it just the same. We are right by the nurses station so there's always somebody close by. They are still letting us hold him and he does really well with it. We had the dr's do labs last night and his white count is down, but his poly's are really high. Sounds like the same old story. Justin is still amazing and confusing everyone, even his doctors. I guess Justin has decided to stay a bit longer than we expected.

from: Celeste

date: 5/9/2000

time: 1:17:03 PM

news: Justin is still hanging in there. We have decided to let God and Justin make the decision what to do. The doctors now let us hold him for as long as we want to and we can have people come and hold him. This past Sunday he was held for 8 hours straight, and he loved it. The only time he got upset was when I put him back into his bed. We didn't expect Justin to make it through the weekend let alone into this week. We take each day as a blessing to still have him here. Dr. Rouse believes Justin knows he is being held. The nurses think it's given Justin encouragement to hang on a little longer. He really wants to live it's just that his little body won't cooperate. Dr. Rouse also said Justin has taught him how resilient he can be. Justin has taught everyone something, even all the doctors and nurses at Riley. He is a special little boy. He has made small steps of improvement and that makes us happy. We are trying to not get our hopes up and yet still believe God could make Justin a true miracle baby. It is out of our hands. We had our meeting on Friday with all of Justin's doctors and I don't think there was a dry eye in the room. Justin is 11 weeks old today and it's like he's lived for many years because of all the people he has touched. We thank everyone for all their prayers and love and support. I'll let everyone know if anything changes.

from: Celeste

date: 5/5/2000

time: 10:49:49 AM

news: I am sending this message out for Bruce and Celeste. Things are not going very well at all and unfortunately, the time is drawing near. Justin's heart rate is dipping down to around 60-80 beats per minute. He cannot be moved because of his heart. Fluid has accumulated in his lungs making it very difficult for him to breathe. They have maxed out his current vent, so the doctors have talked about putting Justin on an oscalator (sp?) which is supposed to be a better vent. Unfortunately, this probably won't change much. Justin's little body is just too stressed out. It is very hard to type this message to all of you, but so many people need our prayers. No one wants Baby Justin to go, but only God knows his purpose on Earth and in Heaven. When the time comes, we will let everyone know when and where the funeral will be held. It will be a closed casket, but anyone is welcome to attend. Please pray for peace and wisdom for all of the people who have become so close to Baby Justin.

from: Jennifer Albright

date: 5/4/2000

time: 1:00:20 AM

news: Justin is still not going very good tonight. His central line fell out today when he was taken downstairs for his x-ray. The dr's were concerned they would not get it back in because of the edema. They did get it back in after a few tries. It's very important for his central line to stay in because that is where all of his meds go into. His x-ray showed there were no fluid collections - that is good news. The bad news is that Justin is not getting better. His edema is worse and the infection is still evident. His white count is down some, but he's still having vent problems. His O2 is too low and his CO2 is too high. Also he had all but stopped peeing. The dr's ordered a stress dose of hydrocortisone as we requested and we will see if that makes a difference. He is also back on a Lasix (diuretic) drip. Dr. Rouse also agreed to start an antibiotic for any fungal infection Justin might have. The downside of that drug is it affects the kidney functions. Obviously Justin is already having those problems so we decided to hold off on that antibiotic and give the steriod a chance. We are at a very difficult time in Justin's life. We must start to look at his chances of ever recovering from all of his sickness. We know he has some brain damage, although we don't know how much. We also know the infection has done more damage to his intestines than he had before the infection. His kidneys are compromised. And, his lungs are damaged from being on the vent for so long. Justin's chances don't look very good right now. I believe the dr's don't give him much hope and they are trying their last ditch effort and hoping it may make a difference but expect that it won't. We, as parents are faced with decisions no parent wants to make regarding their children. Please pray for us to make the right decisions for us and Justin. Also, pray for our marriage to remain intact. This situation has taken a tremendous toll on our relationship and we want to remain together no matter what happens to Justin.

from: Celeste

date: 5/2/2000

time: 11:17:05 PM

news: Justin didn't have a good day. He is still on 65% O2. He is almost as swollen as he was when his kidneys shut down for 5 days. He looks awful. The doctors are concerned he may not recover from the edema and infection this time. We are supposed to have a conference with all of Justin's dr's later this week. We are all frustrated and depressed. This isn't how it was supposed to turn out. We were supposed to have a baby we could bring home.

from: Celeste

date: 5/2/2000

time: 1:11:37 AM

news: The last update was a few nights ago. On Sunday Justin had a CAT scan and it didn't show anything new. There were no collections of fluid detected. Sunday was an "ok" day for Justin. He has continued to need more sedation to keep him comfortable. His white count was up more on Sunday and then up more on Monday - that trend I talked about in the last update. Today they changed his central line because it could've been a source of infection or it could've contaminated the blood they were drawing from it. They drew blood from the new line today to culture it. They also cultured his breathing tube and his urine. I have asked for another echocardiogram to check for vegetation on his patches. All of you nurses out there - I need help!! Tell me where else to look for infection. I need questions to ask the dr's!! We are desperate to find the infection before it's too late. His heart rate is up and he is turning red again. Both signs of infection they tell me. We have turned our brains upside down trying to figure out what is going on. Dr. Rouse wants to do another x-ray with the contrast either on Tues. or Wed. He hopes this study will show him what is going on in Justin's belly. Maybe we can see what is connected to what and where the perf's are. This means another trip downstairs for Justin. Dr. Rouse said surgery wouldn't be a good idea unless we had a clear goal in mind. I know that makes sense, but I am curious to see what is going on inside. Justin's swelling is getting worse. He keeps gaining water weight every day. Dr. Rouse said his chest x-ray looked better today - so that's good news. He is still on 50% oxygen and a rate of 32. Both of those are high, but with the edema they are necessary. He has also lowered his sat's. Instead of being in the high 90's he is low to mid 90's a lot of the time. We know he still has infection in his belly, but there could be more - I figure. Continue to pray and ask God for a miracle. I truely believe that is the only way he will survive. Help me to constantly put Justin back into God's hands. I want to be the mommy and try to fix everything, but I know this is way beyond my abilities. Bruce is finding it harder to struggle through this ordeal day to day. He is worn out from trying to keep it together for me and for Justin, he wants to be the daddy and fix everything too.

from: Celeste

date: 4/30/2000

time: 2:21:37 AM

news: Justin is stable tonight. He had some vent problems this morning, but it seems those are on their way to being fixed. His pressures are holding and the nurses have had to give him extra medicine to keep him sedated. His white count was up a little bit, from 15 to 17. The dr's look for a trend, either up or down before they make any decisions. We'll have to wait and see what happens tomorrow. Tonight he did start to have some new goop come out of his belly. It was puss like. Some other stuff came out of his belly button. The nurse, Ann called the dr and he told her to culture the puss. We should know in a few days if anything new grew out of it. The resident came and looked at the new goop and told us he would try to push for an ultrasound or x-ray or CAT for Sunday. We should know what they decided early in the morning. It seems like the Devil always works overtime on the weekends. We don't get any rest and by the time Monday comes we're more exhausted than we were on Friday. Justin got a new bed tonight. It's a full size hospital crib. He kinda looks lost in it and it's harder for mom to get to him - I had to use a foot stool to reach him. But, he looks much more comfortable and there's plenty of room for all his tubes and wires. We've also put all his stuffed animals at the foot of it to keep him company. He really likes the little beany babies people have bought for him. The nurses use them to prop up his feet and arms. He usually holds on to whatever you put in his left hand. He likes the soft animals. I don't know what to tell people to pray for anymore. I don't know what is considered good news to the dr's. All I know is we (all three of us) need to have the strength to endure what lies ahead. So many have told us we are strong people, but neither one of us feels strong. We know where our strength comes from, it comes from Him.

from: Celeste

date: 4/27/2000

time: 11:45:44 PM

news: Justin had a pretty good day today. They've been able to wean his vent settings down and the dr said his chest x-ray looked good this morning. That's really good news. Dr. Rouse came in this evening and said he wants to do another CAT scan early next week - another trip downstairs and another nervous breakdown for mom!! He's tolerated all the other trips, but it still makes me extremely nervous. Can you blame me?? Justin's pinrose drains are out. He still has his red rubber catheters which suction all the fluid out of his abdominal cavity-at least that's the goal. Dr. Rouse thought the belly seemed to be trying to heal and it was ok to leave the pinrose drains out. He's still seeping stool out of the old wound. I guess the cultures showed some new bugs but the antibiotics he's on should cover all of them. Dr. Boaz looked at the ultrasound they did this morning and said there wasn't any change and they didn't want to do another tap because of the swelling - they couldn't feel where they should insert the needle. Best to leave him alone and try later. Justin did have some excitement today - his bed has a warmer (radiant heat) built in. It extends over and above him to keep his body temp where it should be. Well, his warmer started smoking today. The nurse thought she was going to have to move him out of his room, it started to fill with smoke. When we got there today 3 nurses were moving him to a new bed. Good thing mom wasn't there when all the excitement started.

from: Celeste

date: 4/27/2000

time: 11:14:41 AM

news: Justin is scheduled for another ultrasound on his head today. Dr. Boaz wants to pay close attention to the fluid on his brain. Dr. Rouse took some cultures this week and I'm still waiting to talk to him about their findings. One of the other dr's said there was bugs growing but the antibiotics should cover them. Justin's white count has stayed the same the past two days. He has stayed all swollen too. I don't think he's ever weighed as much as he does now. He can't open his eyes or move anything other than his fingers and toes. He just looks like everything hurts. I feel so sorry for him.

from: Celeste

date: 4/26/2000

time: 1:29:16 AM

news: Justin is doing better tonight than he was this morning. I talked to the doctors today, of course. Dr. Hillier explained Justin's lungs to me - very complicated, but I understood. Most of the doctors at Riley explain things until the parents understand. Justin has some spots on his lungs, but they aren't diagnosing him with pneumonia. Hopefully the vent changes he has made will continue to improve Justin's breathing. Dr. Rouse took some more cultures today. He cultured the wound where stool came from last week, Justin's nose and breathing tube. We should know the results in a few days. Dr. Rouse wants to wait and see what Justin's white count does tomorrow before he makes any conclusion as to what it may mean. Justin is 9 weeks old today. I must admit at times I didn't think he'd make it this far. I wonder what the next 9 weeks hold for us. I am so drained and I have seen the effects on Bruce too. He has given up on being the "forever optomist". That is so unlike him. We have been forced to deal with reality at a very sad level. We have seen other children die at Riley, heard the announcements on the PA system that a child has coded and watched everyone run to help. This is unlike any experience we've ever had. It is very depressing. I walk up and down the halls every day hoping to see some child making some progress. I get so excited when I see a parent holding their newborn because they've been taken off the vent. We've made friends with parents and watch their children get better and be transferred to other units. Riley is a world itself. I wouldn't wish this on anyone.

from: Celeste

date: 4/25/2000

time: 11:18:11 AM

news: Justin had a better day yesterday. He was tolerating the sedation without dropping his blood pressure. Also, his white count was down to 13. It has been as high as 27 last week. The dr's saw some spots on his lungs on the chest x-ray - they thought it could be pneumonia. Today his white count is 22. I talked to the nurse and she said his blood gases were coming back with the CO2 too high (64). Dr. Hillier has made some changes to his vent settings to help him breath off more CO2. They also changed his antibiotics. He was getting Gentamicin every 36 hours now it's every 24 hours. I would imagine they believe he does have pneumonia, which would explain why he had breathing problems over the weekend. I'll give more details as I get them.

from: Celeste

date: 4/24/2000

time: 12:28:06 PM

news: Justin had another one of his weekends. I stayed at the hospital till late last night hoping to see him make some improvement. Justin is having some sedation problems and needed some vent changes. We talked to a couple of his drs yesterday and tried to understand why they were, or weren't doing what we thought would help. It's very frustrating because we have a very limited medical background, but we feel we know Justin. They plan to do another ultrasound on his head today at around noon and may do another tap before the day is over. Again, please pray for the doctors and nurses to make the best decisions for Justin. Also, ask God to help guide me. I need a clear head to understand what the doctors are saying and I need wisdom to ask the right questions to the right person. I'll try to update everyone again tonight.

from: Celeste

date: 4/23/2000

time: 3:18:38 PM

news: As usual, Justin is not having an easy weekend. Please pray for his pressures. They are either too high or too low. Pray that we know what to say to the dr's and that they know what to do to help Justin.

from: Celeste

date: 4/20/2000

time: 11:46:40 PM

news: Another busy day at the hospital. Justin finally had his CAT scan at 4:00 today. I left the house before the nurse could call me and let me know, so I didn't get to let everyone else know. He tolerated it very well. The nurses joked that maybe Justin likes taking a ride every once in a while. Maybe he does, but I don't. It makes me a nervous wreak!! I worry about him all the time, but even more so when he has to have tests done. Thanks for everyone's extra prayers today. We didn't get to see Dr. Rouse tonight, he was in surgery late. I have to remember he has to take care of more people than my little boy. He did come by and talk to the nurse after we left. The nurse said Dr. R. was pleased with the CAT and he was even thinking about removing some of the drains from Justin's belly. He did say he still wants to talk to us. I hope to see him tomorrow. The neurosurgeon, Dr. Boaz did stop by, but wanted to talk to Dr Rouse before he talked to us. Today they decided to do a CAT of his head too. We have to wait till tomorrow to talk to him too. Today they tried wrapping ace bandages around Justin's feet and legs to push the fluid up into his body. Well, that was a bad idea!! I got there and noticed a huge blister forming on the top of one of his feet. It popped while they were doing the scan and is now another source for infection. Say bye-bye to wearing booties for a while!!! I think we're stuck with the edema for a while. I've included something I got in an email from a friend a few days ago. I find myself reading it over and over. I think everyone could benefit from reading it everyday. I asked God to take away my pain. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No. Her spirit was whole, her body was only temporary. I asked God to grant me patience. God said, No. Patience is a by-product of tribulations; it isn't granted, it is earned. I asked God to give me happiness. God said, No. I give you blessings. Happiness is up to you. I asked God to spare me pain. God said, No. Suffering draws you apart from worldly cares and brings you closer to me. I asked God to make my spirit grow. God said, No. You must grow on your own, but I will prune you to make you fruitful. I asked for all things that I might enjoy life. God said, No. I will give you life so that you may enjoy all things. I ask God to help me LOVE others, as much as he loves me. God said... Ahhhh, finally you have the idea.

from: Celeste