JD Thomas/Jordyn Blaze
06/19/06~01/24/04 12:01 am/5:01pm 6lbs/6lbs3ozs
Nov 07, 2009
The doctors appointment: Well, he has to have more testing done on his liver. He has to have what is called a HIDA scan, or a gallbladder scan. He will have to drink this medication that will be absorbed by the liver and then processed by gallbladder. They want to see how the liver is producing the bile, and then how the bile is absorbed into the gallbladder, and the small intestines. The docotr said that sometimes the gallbladder will be there on an ultrasound, but sometimes in gets smaller and stops working. They want to make sure that is not what is happening with him. Because his body is slow at the movement of the bile, enzymes are building up in his liver. Thus giving him the orange color and yellow eyes still. They may have to increase his medication. He also had a EEG done yesterday morning to test the brain response to visual stimuli. they place about 6 electrodes on his head, and then watched on a monitor how his brain reacted as they flashed a slow plusing strob light in his eyes. He didn't even respond when they did this. He just drank his bottle with his eyes closed. The tested didn't take too long, but I still don't have the results yet. A radiologist had to look at them and then his doctor had to look at them. As of yesterday they still didn't have a report. I saw the monitor while they were doing the test, but I don't know what I am looking at so I couldn't even take a guess as to what if anything is wrong. He has an appointment next Tuesday so I should have them by then. JD also has visible blood in his stool. The doctor was too alarmed because his liver is having to work very hard to do it's job, so he said some blood may be expected. It is an alarming sight to see red blood in where it shouldn't be. He also had to have his first round of shots. Poor baby got 3 shots, and they had to take 3 tubes of blood from him. He was not in a good mood yesterday. I wouldn't have been either. Yesterday was long. We were at Strong from 8:30am until 6:00pm. Thank you to Berma for going with me! I was able to go into the library at the hospital and do a little be of research while she kept an eye on JD. Now for a little news on Jordyn. He has been running a fever for the past day or so. He wouldn't even eat a piece of a brownie. I knew he was sick the moment he refused anything sweet. He seems to be in better spirits today, so hopefully he is ok. Well that is all from me for now. Have a good day. Christina
It is neverending: Well, we have a couple of more things that we have to work out this week. Jason fell this weekend, and sprained his ankle REALLY bad! We went to the ER and they said that it didn't look broken, but you guys should see the bruise on his foot. It sure looks like he broke it. I will post a picture when I get one taken. He is out of commision for a few days at least until it heals. He is in a lot of pain. I had an IUD put in last week, and because I have a tilted uterus, the docotr isn't sure that it went in right. I had an ultrasound done but they still couldn't tell if it was in right. So, now I have to go in for a more formal test tomorrow. Hopefully it is in just fine so they don't have to take it out and put it back in. It hurt the first time they did it. I listed on the front page all of JD's upcoming DR appointments. He also has an early intervention appointment that hasn't been scheduled yet. That will be sometime in the next 2 weeks. Speaking of JD, things are frustrating. He doesn't sleep all that well anymore, and when he is awake he crys a lot. His feedings are still taking a long time, and he still makes a terriable mess when he does eat. Hopefully things will get better soon. If not, I guess we just roll with the punches. Talk to you soon Christina
What a Day: Well, I ended up switching JD's doctor. I just wasn't happy with the one we had chosen for him when he got out of the hospital. I had chosen one that was closer to our home, but I ended up switching him to a doctor at Strong, where he was in the NICU. We had our first appoinment yesterday. Let me tell you, there is quite a bit of difference in the care that he is receiving. I was prepared for the doctor, and I had a whole list of questions that I wanted answered. Amazingly, she sat down and answered each and every one of my questions. No rush to hurry, and no round-about answers. They were all straight forward and honest. She even used terms that I could understand. Let me see, where should I start? My first question had to do with JD's REALLY smelly poops. She assured me that because of one of the medications that he is on, he is not absorbing all the nutrients that he should be, and it causes the poop to smell. That is good because I was really worried about that. I couldn't remember Jordyn's poop smelling that bad. JD also has an umbilical hernia. He didn't have it when he left the NICU, he had an "innie", so she thinks that there is some pressure in his abdomen that is causing the hernia to be noticable. She set us up with an appointment for JD to see a gastrointestinal doctor. That appoinment is in September. He will also be seeing a doctor for his liver, because that is still on the large side. This doctor will also check his gallbladder because he has "sluggish" flow of bile between the galbaldder and his liver. We will then need to see a neurologist. JD's legs often are stiff, even if he is just laying on the floor or in your arms. He never really relaxes them. The neurologist will also check his brain development, such as vision and hearing. JD doesn't focus on faces, and he doesn't really follow objects from left to right. They will hook him to a monitor that will tell the doctors if he is seeing different objects that are placed in his line of vision. His hearing test will be a little more advanced to tell if he has any hearing problems. Hearing problems are one of the more common effects that RH disease has on children. The most severe form of his disease is called kernicterus, which is brain damage. Unfortunatly, there is no test that can tell if he has brain damage. That is something that will have to present itself with time, as he develops. Kernicterus can cause seizures, hearing lose, and cerebal palsy. http://en.wikipedia.org/wiki/Kernicterus (this web site can tell you more.) Finally, JD will be seeing an early intervention team, that will work with him on physical and occupational therapy. She will asses him, and determine what other things he may need along the way. Oh yeah, JD weighs 8lbs, 15 ozs, is the same length as he was last time, and his head circumfrence went up a couple of cenimeters. He also had to get blood drawn for his billirubin levels, and a few other tests that they want done. He didn't like it too much. They had to take it from his arm instead of his heal, and it was a challange to hold him still lond enough for her to do it. It took 2 of us to hold him while the lady drew the blood. Poor guy. He had a long day. We will have to do it once a week until things are under control. Well, I guess that is about it for now. I have all the information in my head, and I know that it is a long road for him, but I am trying to stay positive about all of it. It is quite hard to do, but I am trying. Talk to you soon. Christina
Just another day: Not too much going on here these days. Just dealing with life as it comes our way. We have been working activly with Jordyn on potty training. I think that we are tired out more than he is. Although, the first day that we tried he only had one accident and went pee twice. He was so excited. I was so proud, that I had tears in my eyes. It was great. JD is doing good. I am still getting frustrated at his feedings, but I try not to let it show so that he doesn't pick up on it. He hasn't been sleeping too well at night either. He wants to get up at 6 and then he is usually really fussy until 10am or so. I know that it will pass, and we had a much harder time with Jordyn. At least JD sleeps at night, Jordyn never did. I was able to catch both of the boys in a good mood the other day, and got some good pictures of them. They are starting to look alike except of course for the coloring of the skin. The doctors assure me that the jaundice will disappear in a few months. Oh yeah, there are also pictures of JD in the bath. Which he HATES!!!! Have a good day. Christina
It has been a crazy few days here: Great-grandpa had to have surgery for cancer in his intestines yesterday. the surgery took 3.5 hours, but he pulled out of it ok. He has been irratable and cranky since waking from the operation, but he is in a lot of pain. They were able to get all of the cancer, and they don't believe that it has spread anywhere else. Hopefully he will pull through with no lasting effects. JD had his weekly check-up yesterday. He only gained 3 ounses. That puts him at 7lbs13ozs. He is still 20 3/4 inches long and his head only grew .05 of a cm. It has been hot here, and he wasn't taking it too well. He wouldn't eat much last week because of the heat, so hopefully by next week at his appointment he will have gained some more weight. The doctor spent a lot of time measuring his liver. His liver kinda extends up into his rib cage a little bit, so he was measuring how far it went up. His billiruben levels are still high, but they are slowly going down. You can tell by just looking at him. The whites of his eyes are still very yellow, and his skin looks orange, but it looks better than before. They are still talking about him seeing a specialist about his liver. His sucking refelx isn't doing any better. He makes quite a mess when he eats, and his feedings take an hour each. It is very frustrating because he can't eat that much at one time, so he wants to eat every hour or so. The doctor seems to think that will come with time. Hopefully he is right. But the doctor did say that he is doing well considering his obticals. Well, I had better get going now. The baby calls. Christina
The heat is bad: It is really hot here. We have an air conditoner but it is really only big enough to keep a small room cool. JD is normally hotter than the rest of us, so it has been a challange to keep him cool. He hates the water, as you can see in the pictures, but we had to put him in the pool yesterday to keep him cool. He cries so much, that as soon as you take him out he will fall asleep. I added some video clips at the web address on the front page. Nothing new to report today. Update again soon. Christina
When it rains it pours: For those of you who still read this, I need to ask a big favor. You guys prayed so hard for JD, and I beilieve that all of thos prayers worked miricales on my son, that i need for you to do it again. Our family got word a few days ago, that the boys' great-grandfather may have cancer. We will find out for sure this week, but if you could just say a short prayer for Ken, before you go to sleep at night it would help. JD is doing well. The heat gets to him sometimes, but otherwise he is ok. Him and I had a little chat, and I told him that while his great-grandfather is sick, he can't be sick to. My heart couldn't take all of that. Hopefully he was listening to me. Have a good night Christina
Billiruben is going down: Yup that is right. The doctors office called me yesterday and told me that his billiruben level is down one! So, he is now at 11.9. That is great news, although his red blood cell count is also going down. This is not what we want. It is at 27.9. So that went down one too. Hopefully once his liver starts to get rid of the billiruben, the red blood cells will start reproducing again, and bring the level up to where it is supposed to be. If it keeps going down, we are looking at another stay in the hospital so JD can get another transfusion. As long as that billiruben keeps going down I will be happy. Otherwise, JD is doing great. He is eating, sleeping, peeing and pooping. Can't get any better than that I guess. I had a feeling when I was pregnant that something wasn't right. I was constantly talking with jason about how this pregnancy just didn't seem "right" to me, and he told me not to worry. That everything would be fine. I just felt a tight ball in the pit of my stomach that there was something wrong. I wish I had been more persistant with the doctors office, maybe I could have helped JD before things got so out of control. But, I wasn't a doctor, and I trusted that they were doing everything that needed to be done. I have that same feeling now. Deep down in the pit of my stomach, I know that his fight is not over yet. Maybe I am being a worry-wart, but I would rather be that than be passive about the whole thing. Hopefully my feeling is wrong this time. I guess only time will tell. Christina
One step forward. Two steps back: Isn't this the way it always goes. JD's lab results were not what we hoped. His billiruben level is not going down. In fact, since the hospital, it has not gone down at all. It hasn't gone up either so that is a good sign. They just aren't sure why it isn't going down. We have one more set of lab work to do, and if it shows no change, JD will have to see a specialist for his liver. His red blood cell count is also declining. They like the level to be at about 30, and JD's is 28. He may need another blood transfusion if it keeps going down. The good news is that he is now 7lbs 6ozs. That puts him at almost his birth weight. He is 20 3/4 inches long, and his head circumfrence is 13 3/4 inches. Boy can this boy eat! I guess that shows in his weight gain. He is having difficulty sucking, but the doctor assures me that it will come with time. We just have to take things one day at a time, and pray that he gets better quickly. It is an emotional roller coaster, that I would rather not be riding. I just want things to be normal. Our life right now is anything but that. At least he is home with us, I guess we can't ask for anything more. We did do something normal on Friday night. We took Jordyn to his very first fair. He had a blast. He was able to go on some rides, and he played some games. He even won some prizes. It was good for him. I think it made him feel not so left out. Everything has been about the baby lately, that he was getting a little frustrated with us. Hopefully this made him realize that we hadn't forgotten about him. I have put picutres on the site so everyone could see what a good time he had. Well, that is all I have for today. Hopefully when I update again, I will have better news for you all. Christina
Things going well: I know it has been a few days, but things have just been down right crazy around here. The days just fly by and sometimes I wonder what the heck i accomplish every day. It doesn't seem like a whole heck of a lot. JD is doing great. The doctor did a full physical and he didn't have any concerns. They had to draw blood for some tests. He said if there was any cause for alarm he would contact us. He hasn't so I am assuming that everything looked ok. I will have to call to confirm the lab work just so I know for sure. His liver is still large, but that could be due to the extra work it is having to do. If it doesn't go down, or if his billiruben levels remain steady, he may have to see a specialist for his liver. He weighs 6lbs 10ozs and is 19 1/2 inches long. So, since leaving the hospital he has gained 7 ozs and grew an inch! His feedings are still in progress. He has a hard time sucking on the nipple when you put the bottle in his mouth. That is to be expected I was told. He is up to 2 1/2 ounces per feeding. Well, there is really nothing else to report. Everything is going well, and we hope that it stays that way. Hugs Christina
Today was my due date: July 13th, this is the day that I was due to have JD. Now, he is almost a month old. Kinda hard to believe. He has had to fight so hard to get where he is now. JD is still doing well. We had a little scare with him pooping but all is good now. I thought we would have to go to the doctors today because he hadn't poop in two days, but he took care of that last night! (JD may still incounter intestinal problems, that is why it makes me happy that all is good in that department) His doctors appointment is tomorrow. Hopefully they don't have any bad news for us. I will keep you posted. The love and support that Jason and I have recieved is priceless. I never knew that so many people could care so much about a family that they have never met. It amazes me. I guess there still is love in the world. Thank you so much. Well, I have to get dinner on the table and the baby needs his medication. I will let everyone know how the dr appointment went. Keep praying! Christina
Home At Last: JD got to come home Friday night. Sorry that I haven't posted sooner, but I just haven't had much time to do anything. JD is such a good baby though. He hardly cries, only when he is really hungry, or really messy in the pants. He even sleeps ALOT at night. I think I have the NICU nurses to thank for that. JD came home on 2 different medications. It is tricky to get him to take them, I usually have to wait until he is hungry or I have a hard time getting him to take it all. One of the medications is for his liver, to help him process the billiruben, and then other is to keep him calm. Hopefully he will be off of that on soon, then we might see a change in him. It keeps him pretty drugged most of the day and night. He has his first of many weekly dr appointments on Friday. Hopefully everything is still ok. I haven't noticed anything out of the ordinary, but then again I really don't know what to look for. It is great to have him home. I love to just watch him, and I find it hard to take my eyes off of him sometimes. He is really a miricle. My favortie time is the night when I can just sit with him in the quiet of his room, and feed him. I enjoy every moment. Some may call me crazy, but I truly enjoy those late night feedings. Jordyn is adjusting well, although it has only been a couple of days, and JD doesn't do too much at the moment. The first night home Jordyn tried to share his blankie with him, and tried to show him his cars and trucks. He gives him a kiss everynight before he goes to sleep. He will tell you that JD is his baby brother. It is priceless. I thought we might have a problem there, but so far so good. We have found a lawyer. He is out of NYC, and is supposed to be one of the best in his field. He believes that we have a strong case, and was really sorry to hear what had happened. He had a hard time believing some of the things I told him. He couldn't believe that things got this out of control, and it took so long for the DR to catch on. I told him that he wasn't the only one. Hopefully things go well in that area too. Well, I have posted some new pictures. They were taken over the course of the past few days, as we all adjusted to having a baby in the house again. Enjoy. I will post again soon. Thanks for sharing. Christina
HE IS BEING DISCHARGED!!!!!!!!!!! Early this evening, Jason and I will be able to finally introduce Jordyn and JD to one another. They are letting him come home.He is no longer on o2, and hasn't been for 24 hours. They are circumsising him this morning, and if all goes well with that, he gets to come home with us. He will be on medication. We actually have to be taught how to give it to him. I can't believe that he is coming home. We haven't even been there for a month, but it has felt like a lifetime. I will update when we get JD home! That sounds good huh? Christina
WOOOHOOO!!!! There is no sign of growth on JDs blood cultures. They said that usually if something were going to grow it would happen within 48 hours, however they will keep in it a lab for 5 more days to see if anything grows. But that looks good. He was even able to go down to 1 liter on his O2. All of his stats have been great since the blood transfusion. I had a long chat with the doctor this morning. I was sick and tired of being confused so I just asked a whole lot of questions. The short story is that JD is out of danger for now. There is no way to determine if this has caused any permanet damage to any part of his body. He seems to have no apparant brain damage. He is eating on his own, breathing mostly on his own, he moves and cries, and has shown them no signs that anything is wrong with his brain. This is good to know, the high level of billiruben can cause severe brain damage. Luckly JD was treated before then. He passed his hearing tests, and all is normal there. When he does come home he will be on medications to keep bringing down the billiruben. They like it to be lower than 2. JD's is between 10 and 11. (It was near 20 at birth)That number is going down very slowly, and the medication will help him rid his body of it. The doctor looked at me today and said that JD is very lucky, and a real fighter. He has beaten a lot of odds. I knew she meant that this could have killed him, and he was very close. If it wasn't for them, he may not be here now. I get chills at the thought. I guess it is just a waiting game now. He can't come home until he is eating, pooping, peeing and breathing all on his own. We have everything but the breathing part. We are well on our way. Thanks to those who still check on JD. I know you are thinking about us, and we are thinking about you too. Love, Christina
We are at a standstill tonight: There is really nothing new to report. The blood transfusion, has worked for now, and they will keep checking him. His O2 is better, but they still don't know about infection. He may need another transfusion. At this point I honestly have no idea. I got my hopes up too high. He was doing great, and then this. Who knows when he will come home now. I need answers, and no one can give them to me in one straight shot. It is a bunch of mumbo jumbo that I am slowly learning to understand. The information just kinda blends together and it is hard to keep things straight. I can feel myself getting exhausted. Mentally, physically, and emotionally. The days blend one right into another. I swear I wouldn't even know the date if I didn't have to sign in to see JD everyday. I am trying to stay positive, but it is increasingly difficult. Hopefully we will know more when the blood cultures come back. Hopefully that will be tomorrow. Until then. Christina
I didn't go to the hospital today: I was up all night throwing up, so I thought it best that I stayed home so that I didn't expose JD to anything. Jason and his parents went up instead. I should have gone up. They didn't give very good news. JD is up a lot on his O2, more than he has been needing, so they did an x-ray to see what was going on. He has fluid in his lungs, so they had to give him some lasix to get rid of the fluid. They are testing his blood for signs of infection. They are also doing blood cultures but those results won't be back for a few days. If in 48 hours the cultures don't show signs of infection, they will stop anitbotics. He is on them for now. Just in case. They did take out the belly button IV, because sometimes that can cause infection as well. He now has one in his arm. He will be getting another blood transfusion tonight. The tests showed that his red cell count in down, and it has been down for a few days. They were hoping that it would go back up, but it hasn't. The nurse said that he may feel a whole lot better after the transfusion. It will take 3-4 hours to complete. I am going up first thing in the morning, I could barley tolerate being home all that time. I feel so guilty that I didn't go up there. I just thought I was doing what was best, but I thought that he was doing ok. I never expected this type of news. He was doing so good. Tomorrow is the billiruben test. Let's hope those numbers went back down and not up again. That isn't good either. I don't think he will be coming home this week. I was for sure that he would. I guess I was wrong. On a happier note, Jason held JD for the first time tonight(he was scared of all the tubes and IVs) He even changed his diaper and burped him. Of course I missed that too. There are new pictures. Take a look. I will keep everyone updated when we know more. Good night. Christina
He is so beautiful: I just can't stop staring at him. This little boy has had to fight so hard, and has overcome so much in such a short time, it amazes me. I am amazed at his strength and determination. So young, yet so strong. I think I made poppy's night too.(Jason's step-father) I let him hold JD. It is the first time I have let anyone hold him. I guess I have been a little selfish in that area. I just didn't get to hold him for so long, that it was hard to pass up any chance I got to hold him. But tonight he was doing good and I wasn't feeling so selfish. :) JD is doing good. He is on room air again, but he is at 2 liters of O2, so he just needs a little tiny help breathing. He LOVES to eat. In fact his appetite is so good, they are increasing the feedings faster than before. You can tell he is hungry too, he will SCREAM, until someone puts that bottle in his mouth. If it doesn't get there fast enough, he will try to eat his hands, and whatever else he can put into his mouth. He will drink it in about 2 minutes, and then go right back to sleep. Funny thing is that is exactly how Jordyn was too.:) Not really much else to report. Oh, JD also got to meet his great aunt and uncle tonight. Of course he slept through all of it. Thank you for coming you guys! He knew you were there that is why he was so good tonight! Well, I am off to bed to do it all over again tomorrow. I can't wait to bring him home.(Do you think if I say it enough it will happen faster?) LOL Write again tomorrow. Christina
What a crazy night: We were on the road to Rochester, and my tire went flat. We had to wait for an hour for help. Thank God Jordyn had fallen asleep, so he didn't get cranky. Thank God that my sister and brother-in-law were around to help us. Then, we get to the hospital, and we find out that JD is requiring a lot more O2 than normal. He was having trouble breathing all day, or so we thought. They even ordered an x-ray of his lungs, but they were clear. I just called the NICU to check on him, and it turns out that the O2 wall unit was starting to malfunction. They had to replace the whole thing. He is doing better now. Breathing room air and sleeping. All of his stats are good. JD has a lot of mucus coming from his lungs, so they are going to be keeping an eye on that. They think he might have a slight cold. He also gets tired very quickly. Sometimes you can see it in his breathing. His color is getting better, and he is starting to lighten up. He doesn't look green anymore either. None of that ever bothered me. He is beautiful no matter what. Lastly, I was wondering if anyone looking at this might be able to direct me to a support group for this sort of thing. I have not been able to find much. I have so many questions, and no one really seems to know anything. The internet can only help so much. Just leave me a message in the guestbook if you have any information. Thanks :) Well, I am off to sleep. Have a good night. Christina
JD didn't want to eat for me: I tried to get him to take the bottle, but he wouldn't drink it, the nurse ended up putting it in the feeding tube. She said it may take awhile for him to coordinate the breath, suck, swallow thing. He was on room air for most of the day which means he had no help with his O2, but as of this evening, he is back on the nose cannula. He tends to get more tired at night and doesn't do so well. But hey, he has made it this far when no one thought he would. His color is even improving. I spent most of the night alone with him. I told Jason's parents they had to stay home. They had been driving back and forth every day, and I knew that they needed to rest, and get some things taken care of. (Even though they think I was being mean!) I don't know what we would have done without them. (I know that they are reading this too) Thank you guys for all of your time, money, and constant support. We love you very much! Thank you to all of you who have made this rough road a little less rocky. I loved the time with him. When I was in the hospital, I spent most of my time with him. Of course I couldn't hold him, but I would just sit there and will him to get better. Softly talking to him, or holding his hand. It was not uncommon to find me there at 3am when I was having trouble sleeping. The nurses became accustumed to my nightly visits. I miss those the most. If we were closer, I proabably would still visit late at night. However it just isn't possible. I can't wait to bring him home so I can see him whenever I want. Well, I must get some rest. Love, Christina
More good news today: JD is getting ready to have his first bottle today! I just called the hospital to check on him, and she was getting ready to feed him for the very first time. I wish that I could be there, but she said that they like to do the first one in case there are any problems. That is ok, I will be there for the 2nd feeding! He is making such progress. The best case scenerio is that he will be home in 10 days. They are even considering removing the nose cannula to see how he does on just room air! He is going to be getting medication for 7 more days to rid his liver of the billiruben(the bad red blood cells). They had to do another ultrsaound of his heart to see if the hole that was there had stayed closed, and it has! He still has some congestion in his lungs, so they are going to keep an eye on that. I couldn't ask for anymore good news! I think that I might fall over. No one expected that he would recover this fast. I must say that is has to be all the people that are praying for him. He has so much love surrounding him, he can't do anything but get better! Well, I have to get going to the hospital. I will let everyone know how he does with the bottle! Love, Christina
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