Friday, June 24, 2005 1:21 PM CDT
NO MORE OXYGEN!!!!!
Jake had his oxygen study on Monday and Tuesday and did very well. He was definately not happy when I put the cannula back in his nose after the test. I was very anxious for the results so I called the doctor the next morning. The weren't sure they had the results but they were going to check and call me back. The call finally came later in the afternoon. He had passed! I pretty much knew he had passed when the test ended, but to hear it officially was more wonderful then I could have imagined. He has been off the oxygen since Wednesday afternoon, and he couldn't be a happier baby. He is smiling, talking, and laughing much more now. As of this morning we do not have an ounce of supplimental oxygen in our house. Even the giant tank is gone. So as far as the impact on when his surgury will be, it still looks like we will be doing it in August. I will of course continue to update you as new and exciting things happen.
Thursday, June 16, 2005 9:53 AM CDT
Today Jake weighed 14 pounds!
It is unbelieveable to me that he weighes almost twice what he weighed when we brought him home three months ago. We have been very lucky with his health, and we have actually gotten to go to a few outings lately. Jake has really enjoyed himself and so have we. The appointments with the urologist, pulmonologist, and the neurologist, went well. The urologist and the pulmonologist have decided that it would be best to wait until this fall to have his hernia surgery, mostly because of his oxygen issues. We will be trying to take him off of the oxygen again on Monday. Keep your fingers crossed, and a little prayer wouldn't hurt either. The urologist is also defering this surgery over to Dr. Wayhoff. He is the doctor that did Jake's PDA surgeries. The urologist said that Dr. Wayhoff just plain does more of these, especially on the little guys, so he felt more comfortable with him doing it, and we have no problem with that at all. It is nice to see a doctor humble himself now and again. The neurologist went very well. She was extremely pleased with how Jake is doing. She went through her developemental check list and checked off everything. She also said that the grade IV bleed is the weakest one she has ever seen. I asked her where she was the week he was born. I told her that we had been told that Jake would be severly disabled. She said that we very unfortunate(to put it lightly). She did let us know that the vast majority of sever bleeds do result in some disabilities, but there is no way of knowing what the outcome will be. She also said that there is no sign that the bleed was ever there, that we can see, and if the scaring and damage aren't there then it isn't there. In other words there is a possibility the he will be fine. The is also still a possibility that there was damage done that we can't see with an ultrasound, but only time will tell us that. Anyway she gave Jake an A for the day. The only thing she is wanting us to watch is a slightly low tone in his trunk and a tone on the high side of normal in his legs. While we were at the neurologists office we saw a few kids with some severe neurological disorders, and even though the future is still very much unknown we feel so unbelievable blessed that Jake is here and doing as well as he is.
Friday, May 27, 2005 8:41 AM CDT
Today Jake weighed 12 pounds 1 ounce.
We had a visit with the Jake's doctor today. He was very pleased with the amount Jake has grown, and with the fact that we actually managed to go 4 whole weeks without seeing him. We have decided to keep all the medications and the higher calorie formula the way it is for now. On Wednesday the 18th we went in for Jake's oxygen study to see if we could take him off the oxygen. Unfortunately it was a no go. They took him off the oxygen when we got there and he made it only an hour before they had to start turning him back up. within a couple hours he was right back where he normally would be. Apparently he just needs a bit more time. We are meeting with his pulmonololist next Wednesday to find out what the plan will be. Hopefully we can try again soon. We also meet with the urologist, about surgery, on Wednesday and the neurologist on Thursday. I will have an update on these appointments for you on Friday. We continue to be very thankful to all of you for your thoughts and prayers, and for signing his guest book. It will be a wonderful thing to put into his baby book.
Friday, April 29, 2005 6:51 AM CDT
Jake weighed 10 pounds 6 ounces today, and is 22 inches long!
Sorry it has been so long since I have been able to update this. Jake keeps me very busy these days. We had a pretty good scare on April 15th. Jake stopped breathing! I was home alone with him when it happened, and called 911. I couldn't believe the response time. The cops and paramedics were great. Jake quickly brought himself back to pink, but we decided that we had better go in to the ER anyway. He had a nother episode in the ER. I was so glad that the doctor got to see what he was doing. We finally concluded that he was severly refluxing which was blocking his airway and choking him. They wanted to readmit us to the NICU but I fought that one. I asked if they were ok with him going back home on a monitor. Between the fact that Jake brought himself back from the episode on his own (they didn't need to bag him), the very quick response time of the Woodbury cops and paramedics, and the fact that I was worried they wouldn't let us back out I was comfortable enough to take him home. The neonatologist on that day was Dr. Colman, and I knew he would tell me if he really thought Jake should be in the hospital. When he agreed to let us go home I was very reassured. Jake has been on an apnea monitor during the night since that day. During the day I am just with him every minute watching to make sure he is breathing ok. Since the 15th he has not had another episode. When I see him reflux now I think he is handling it better. Hopefully he has matured enough in the last few weeks to be able to handle it better. I wonder when the day will come when I will be able to take for granted that he is breathing.
He came off the lasiks with flying colors, but the diuril (another diuretic) didn't go quite as well. We tried him off of it last Monday, and by Saturday he was breathing so much harder that I decided to put him back on it. We went to one dose per day instead of two and he seems to be doing fine with that. Maybe this is just on of those Jake things. He seems to really have a problem when you do anything quickly or drastically. We are planning on trying him off again next Sunday, and the oxygen study is still sheduled for the 18th of May.
All in all, the doctors are very pleased with his growth and eating. I think they are all pretty suprised that we have not been back in the hospital yet. I now am realizing how close to the edge Jake was when he was discharged, but once again he has shown us his strength along with the help of all of your prayers. I will continue to update this website so please check back. This next month will hopefully be pretty quiet. With a little luck Jake will make it off the oxygen, because in June we have some pretty big things coming up. He will be having surgery and we go back to see the neurologist. I will let you know how it all goes.
Thursday, March 31, 2005 4:43 PM CST
Jake weighed 9 pounds today!
Things have been going fairly well sice we have been home. The lack of sleep is a hard adjustment for us, and we have been having some problems with Jake's digestive system, but all in all it has been good. We had an appointment with the pulmonologist this morning, and they took Jake off of the Lasix and the KCL. It was meds to help him breath. While we were there he was breathing 28 breathes per minute! In the hospital it was 60 to 70 bpm. They were very pleased at how he looked and how he is growing. The goal is to have him off the oxygen by the middle of May. I hope you all continue to check the web site. Jake keeps me very busy, but I will try to update it as often as I can.
Friday, March 11, 2005 3:22 PM CST
Jake weighed 7 pounds 6.5 ounces today.
Today we took Jake home! He is off all of the monitors and only came home on oxygen. The car ride was very uneventful. He pretty much slept through the whole thing. As soon as we got home he opened his eyes and looked around. We introduced hime to Colby (our dog), and put him in his bouncy seat. He seems very happy to be home. I would like to thank all of you for your kind thoughts and prayers. Without them we wouldn't have made it through this. Our journey with Jake is just begining, and we still have some big hurdles to clear. One of the next big ones will be his hernia surgery in June. We will continue to post his progress as long as they will let us. Tank you again from the bottom of our hearts!
Thursday, March 3, 2005 7:23 AM CST
Jake weighed 6 pounds 11 ounces today.
Last Friday turned out to be a very bad day. Right after I got to the hospital Jake had a bad spell, which he never does. His heart rate and oxygen saturation kept dropping and wouldn't stablize for a good 15 minutes, and unfortunately we had a nurse that day that didn't know us and didn't have a clue. They did a full septic work up on him and started and IV. The only thing that came back unusual that day was his hemoglobin. It was only 9.8, so they decided to transfuse him and see if that helped. The next day his urine culture had grown some ecoli(not sure on the spelling there), and his x-ray looked a bit worse than it had. We were terrified of RSV among other things that could take Jake down hard. They put him on antibiotics for the UTI and took another urine culture. Meanwhile the RSV test had come back negative!!!YEAH!!! At this point I was not convinced he was sick. Since the transfusion he seemed much more like himself. On Sunday during rounds we found out that nothing had grow from the new culture so we dc'd the antibiotics and started bottling again. We were back on track. Jake was really doing okay with bottling at the begining of the week, but it seemed that we weren't making any progress, so I decided we needed to mix it up a bit. I told them I wanted to give Jake another shot at it with the thin liquid. Since there was no documented danger of him asparating they gave me the thumbs up. We tested it out for 24 hours and he honestly did fine with it, but didn't seem to be getting much formula with his sucks. The next day we tried it with the liquid slightly thickend once a shift and he completed all three bottles for the first time. Today we started to try for every other feeding and he completely took all of them! If he can keep moving forward like this it's possible that we might be home that much sooner. I pray everyday to give Tom, Jake and I the strength to get through this last part. It's a lot tougher then I thought it would be.
Friday, February 25, 2005 7:58 AM CST
Jake weighed 6 pounds 5 ounces today! WOW!
Jake's eye exam on Tuesday went really well. The doctor said he is healing well, and whne I asked him what the future holds, he said his best bet was 20 20 vision! I guess the surgery is worth it. On Wednesday Jake had a good OT session. Juliann was very pleased at how he was doing. On Thursday Jake had a follow up head ultrasound. I was nervous, but the results were not bad. The bleed has completely resolved, but there is an increase in some fluid in his brain which could cause problems. They will do a follow up ultrasound in a month. The doctor have finally decided they are ready to give Jake is immunizations. They will probobly do it some time next week. I am a bit nervous since Jake seems to over react to a lot of things, but they will watch him closely. Other then that we are still working on his bottling. It's going along pretty slowly at the moment, but hopefully he should take off with it soon. It is still looking like he will be home in the next couple of weeks, and we can't wait!
Monday, February 21, 2005 11:22 AM CST
Jake weighed 5 pounds 10 ounces today.
This weekend was much better around here. Things were pretty quiet. His speach consult for his feedings went pretty well. She recommended that we do a swallow study on him, and we decided to only bottle him once a day antil that was done. The two bottles over the weekend went well. The one on Sunday went much better then the one on Saturday. I think he just may be getting the hang of this. The swallow study and the upper GI this morning went well. There were no asparations and only grade I reflux (next to none). We shouldn't have any physical problems with the feedings and as he gets stronger he should just do better and better. We are going to try a bottle with thickend formula today to see if that helps get him going. We did get some big news over the weekend. We have been moved to the green team! You get moved to this team when time and very little maintenance are needed. It's one of the steps to getting out of this place! Yeah! I also met with the discharge coordinator on Friday. She gave us a look ahead at what Jake will need to accoplish before he goes home. It's a long list, so we will just start with the feedings and see how that goes. I guess that doesn't seem like it was a quiet weekend, but compared to what we used to go through everyday, it was really quiet.
Friday, February 18, 2005 8:27 AM CST
Jake weighed 5 pounds 9 ounces today.
This has been a very busy week for us. Monday Jake took his very first bottle! It went pretty well. He was definately interested in it and took about 20 ccs. They upped his intake to 50 ccs every three hours. On tuesday the started to try bottling him once a shift. That didn't go quite as well. It saps so much energy out of him that the second feeding of the day was much harder. Wednesday Jake had his OT and did well. Julieann says he is getting much better. He also had another eye exam. Dr. Miller was VERY pleased at how his eyes had healed, and he will look at them again next week. Thursday Jake rolled over! He was laying on one side, flipped himself onto his back, and then rolled onto the other side. Unbelievable!!!! We also had to move AGAIN. Not happy about that. They decided to move us because Jake has tested possitive for MRSA (don't ask me), and they want to put all THOSE kids together. I would like to know how he got it in the first place. I will be getting some answers about this today. All in all I am getting very tired of that place and we can't wait to get Jake out of there! Thankfully it looks as though the end is in sight. I am meeting with the discharge coordinator today. I'll let you know how it goes.
Friday, February 11, 2005 5:03 PM CST
Jake weighed 5 pounds 1 ounce today.
Can anyone believe Jake is over 5 pounds!!!
Today is a much better day. Jake is back up to his full feeds, which is 45 ccs, and his IV is out. They put him back to rotating 3 hours on the CPAP and 3 hours on the nasel canula, and he is doing beautifully with that. They are going to do that throughout the weekend and then reassess him on Monday. He is even opening his eyes more again. We even got to snuggle for a couple hours today. They possibility of taking him home seems to be coming closer and closer.
Thursday, February 10, 2005 4:57 PM CST
Jake weighed 4 pounds 15 ounces today.
Well I was right, they extubated him early this morning. What a huge relief! He had done well on the CPAP through the night, but when I got to the hospital he was very aggitated. I was only able to calm him down for a few minutes and then he would get upset again. I started to get very worried that something was wrong. I keep forgetting that babies can be fussy and not have something wrong. We gave him some tylenol and one of his primary nurses, Shelby, talked us into leaving. When we left she had calmed him down and he was sleeping. I just hope he has a good night.
Wednesday, February 9, 2005 4:46 PM CST
Jake weighed 4 pounds 15 ounces.
This morning was hectic to say the least. Jake had to have eye drops before his surgery every ten minutes, and he fought it tooth and nail. Then his IV bag was knock onto the floor, so they had to get a new one STAT, and they had trouble getting his surgery info into the computer. After all that the surgery went well. His intubation went smoothly and so did the surgery. Throughout the day they decreased his vent settings in preparation for extubation the next morning. He did very well with each decrease which we took to be a very good sign, and he had very little discomfort. I left that evening with a hunch that they would be calling us in the middle of the night when they extubated him.
Tuesday, February 8, 2005 4:04 AM CST
Jake weighed 4 pounds 12 ounces today.
Jake had another eye exam today. This on did not go well. The doctor told us Jake would need surgery tomorrow. They need to go in with a laser and stop the progression of the ROP before it leads to blindness. The most unfortunate part of the surgery is that Jake will have to be reintubated for at least 24 hours. I am very worried about that since we JUST got him off the vent last week. I hope he hates it as much as he did before, so we can take it out ASAP. From what I understand it is a quick proceedure and there isn't too much pain after the surgery. There are much worse things he could have to go through right now, but the fact that they have to put an IV in and put him on a vent makes me feel like we are slidding backwards again. I just hope and pray that this doesn't put him too far back in his progress. We did do a bath again today, and he really is doing very well on the CPAP. They are doing some short periods off the CPAP today, and his feedings went up to 45 ccs.
Monday, February 7, 2005 4:01 AM CST
Jake weighed 4 pounds 12 ounces today.
Today was a very nice day. I went shopping for Jake with my mom. I bought him a cute mobile for his crib at the hospital, and then we had lunch. Jake was doing great on the CPAP, and we had a great time just hanging out together. These are my favorite days...basically when nothing happens.
Sunday, February 6, 2005 3:56 AM CST
Jake weighed 4 pounds 11 ounces today.
This morning we hung out and read the paper as a family. It was a nice feeling. Jake was still on CPAP today, and we have devided to keep him on it for a few days and then try him off again. I got to give him a bath again today. He really loves his bathes and I love giving them to him. My favorite part is snuggling with him after the bath when he is all bundled up in warm blankets.
Saturday, February 5, 2005 3:37 AM CST
Jake weighed 4 pounds 9 ounces today.
Jake was taken off of CPAP this morning to see if he can hack it on his own. By the time I left for my baby shower, Jake wasn't doing all that well. He was aggitated and had trouble settling down and getting comfortable. I was worried, but Tom said he would go back to the hospital after he dropped me off. I am glad he was there because Jake continued to go down hill. By 10pm Jake had had it. They put him back on the CPAP at that time, and he did beautifully after that. I guess he wasn't quite ready yet.
Friday, February 4, 2005 3:32 AM CST
Jake weighed 4 Pounds 8 ounces today.
They decided not to try him exclusively on the nasel canula yet. Today they are going to see how he does with rotating three hours on the CPAP and three hours on the nasel canula. It is so nice to see his entire face! I am still afaid to believe that we have beat that vent, but it's looking good.
Thursday, February 3, 2005 8:15 AM CST
Jake weighed 4 pounds 6.5 ounces today.
Today was a huge day for Jake! I held Jake for two hours while he breathed easily with only a nasel canula(oxygen tubing)! He did so well that we decided to try it again while we gave him a bath. After his bath Jake moved to his new room #2. It's a room with a view, of 35E, but it is nice to have the window. His feedings went up to 40cc's, and tomorrow if his x-ray looks good they will try him off the CPAP for as long as he can tolorate it. If today was any indication, we just might be done with breathing machines. All we can do now is wait and see what he can do, and pray and pray that he doesn't get sick again.
Wednesday, February 2, 2005 8:33 AM CST
Jake weighed 4 pounds 7 ounces today.
Jake is still extibated! He seems a bit more relaxed today. I really hope he is getting over the hump with this. I am so scared to believe that it will last. Jake had his occupational therepy (OT) session again today. I am always a little scared to ask her what she sees, but today didn't do to bad. Last time Jake was out right flolopy, and this time he was fighting her. He is a little jittery, which is a flag she looks for, but I think it had more to do with the neb treatments they just increased then his nervous system. I held him today for several hours, and he just slept peacefully. We had another great day.
Tuesday, February 1, 2005 8:28 AM CST
Jake weighed 4 pounds 6 ounces today.
Jake is still on CPAP! I am very encouraged at this point that he will be able to stay off the vent. He had his eye exam again today, and his eyes had worsened a bit. He now has stage II zone III in his right eye, and stage I in the other eye. Still now significant worries at this point, but we do need the ROP to slow down, stop and start to reverse itself. That's not to much to ask is it?
Monday, January 31, 2005 8:21 AM CST
Correction for the last two days Jake weighed 4 pounds 6.5 ounces. Sorry apparently I got sixes stuck in my head!
Jake weighed 4 pounds 7 ounces today.
Jake is still extibated this morning. I am sicker than a dog, and I will not be able to see Jake for the first time. It is killing me not to go down there especially at such a critical time. We need to keep him calm or he could fail. Tom is going to get off work a little early to go down and hold Jake. That makes me feel better. At 2:15pm today Jake will have made it past the 24 hour point. That's a good start.
Sunday, January 31, 2005 8:15 AM CST
Jake weighed 6 pounds 6.5 ounces today.
Today Jake was extibated and put back on CPAP. We have been told that they are not very optimistic about Jake making it off the vent, but we have to give him a shot to show us what he can do. I am very cautiously hopeful. Tom and I were at the hospital late into to the evening helping to keep Jake as calm and comfortable as possible.
Saturday, January 29, 2005 8:08 AM CST
Jake weighed 6 pounds 6.5 ounces today.
I had Jake's first baby shower today, and I had a wonderful time. It's making me more and more excited to bring Jake home, and that is making it harder and harder not to have him here. Jake was doing well today. No chages really, except that they are starting him on some steroids to prepare him to be extibated tomorrow.
Thursday, January 27, 2005 8:53 AM CST
Jake weighed 4 pounds 8 ounces today.
Jake's blood gas this morning was not good at all. I was afraid it was due to the rate change yesterday, but it turns out that he was breathing above the vent so they didn't think that was the problem. Instead the turned up his tidal volume and his pressure, which apparently reflect his weight. I was happy we didn't have to take a step back. They were a little concerned at how much weight Jake had gained yesterday, so they gave him an extra dose of lasiks to even that out. They also switched his formula, because he was having some problems digesting the one he was on. He had is first occupation therapy exam today. Obviously we are very interested in hearing what they have to say because of his IVH. I guess it went okay. Jake decided to sleep through the whole thing, so she really couldn't tell me much. She said she would try again next week. She did seem a little concerned about how much time he is sleeping, but I think he is starting to spent more time awake now. Tonight he had his eyes open for long periods of time. Just looking around and checking things out. Hopefully for his next exam he will be awake.
Friday, January 28, 2005 8:50 AM CST
I seem to have accidently copied the wrong information for Wednesday. Here is the right info.
Jake weighed 4 pounds 5 ounces today.
Today was Lori's last official day with us. She has been Jake's primary for so long. We are going to miss her very much. The doctors turned down his rate again today to 40. His blood gas was pretty good, but his hemoglobin was low so he had to get another transfusion. His feedings went up to 38ccs every 3 hours, and we hope to see some good consistant growth now.
Wednesday, January 26, 2005 10:14 AM CST
Jake weighed 4 pounds 5 ounces today.
Jake had his second eye exam today. The doctor found stage I zone II ROP. Basically he saw the very beginnings of retinopathy of prematurity. Hopefully it will not progress any further, but we have a ways to go before we will be too worried about any long term problems.
Tuesday, January 25, 2005 10:13 AM CST
Jake weighed 4 pounds 3 ounces today.
Jake had his second eye exam today. The doctor found stage I zone II ROP. Basically he saw the very beginnings of retinopathy of prematurity. Hopefully it will not progress any further, but we have a ways to go before we will be too worried about any long term problems.
Monday, January 24, 2005 10:13 AM CST
Jake weighed 4 pounds 2 ounces today.
They decreased Jakes rate on the vent to 45 and his pressure from 28 to 20 this morning, and he tolerated it well. With a little luck and some hard work from Jake, we are slowly weaning him off the vent. His feedings are still going well, and all of his bodily functions are working well. If the vent settings continue to be able to be turned down we will probably try him off the vent again middle to late next week.
Sunday, January 23, 2005 9:50 AM CST
Jake weighed 3 pounds 14 ounces today.
My brother Ben and his girlfriend Shawn got to meet Jake today. I am so glad they got to see him before he got too big. We are holding Jake at least once everyday now, and I really think he likes it a lot. Today was another big day for Jake and I. I got to give him a bath today. He absolutely loved it. He was so relaxed through the whole thing. Then afterwards I got to snuggle with him to warm him back up. He actually went a few moments with out any monitors on…scary, but he did great! He was sating 96 when we put him back on the monitor. What an incredible experience for Tom and I! So ended another good day for Jake.
Saturday, January 22, 2005 9:49 AM CST
Jake weighed 3 pounds 13 ounces today.
I am starting to get concerned about Jake not gaining any weight lately, so Dr. Colman, one of the neonatologists, stopped by to talk to us today. He was not worried at this time about his weight, and he went over some more details about the possible tracheostomy. Unfortunately he is seeing the trach as being much more of a possibility then we were thinking it would be. He basically told us that after what he saw Monday, and the amount of support he is still requiring, that it will be very unlikely that Jake will be able to make it off the vent in the next few weeks. In fact he wasn’t even sure if it would be worth trying him off again. He also told us that if Jake did get the trach he would be in the hospital for another 8 weeksand wouldn’t come home until April. Apparently it takes quite a bit of time to coordinate all of the support care he would need at home. Honestly, I don’t think the doctor should count him out so soon, and I will insist the Jake is given another chance at breathing on his own before they do the surgery for the trach. We are still very hopeful, and we are encouraged by the small rate decrease that Jake tolerated this morning.
Friday, January 21, 2005 9:49 AM CST
Jake weighed 3 pounds 13 ounces today.
I painted Jakes room today. It really looks nice. I am so excited to bring him home to see it. Because of the painting I did get to the hospital a little late today, so we didn’t have time to have both of us hold Jake. He is doing well today though, and he is starting to open his eyes more again. We found out that out first primary nurse, Lori, is leaving us. She has helped us through so much, and cares so much for Jake. We are very sad, and will miss her very much.
Thursday, January 20, 2005 9:48 AM CST
Jake weighed 3 pounds 14 ounces today.
Jake is doing very well in his big boy bed. He really seems to like being bundled. There isn’t anything going on today, and we are loving the boredom! Jake and I just hung out with each other this afternoon. Today was the first day that Tom and I got to hold Jake on the same day. He tolerated it beautifully. His feedings are still the same, and he really seems to be enjoying them. I hope and pray for many more days like this one.
Wednesday, January 19, 2005 10:33 AM CST
Jake weighed 3 pounds 13 ounces today.
I brought in a few of his smallest outfits thinking that they might even be too small. Silly me! I guess I really do see him being bigger then he actually is. The outfits were definitely too big for him, but that didn’t keep him from looking incredibly adorable! I changed his diaper and then dressed him for the first time. What a beautiful moment that was. Its funny how something so simple, that so many people take for granted becomes so important. Once I got him all dressed, I got to sit down and hold him without a blanket. He suddenly felt so small in my arms. I hope and pray every minute of every day that he can stay healthy and just get sometime to grow.
Tuesday, January 18, 2005 10:05 AM CST
Jake weighed 3 pounds 14 ounces today.
Jake had a nice quiet night last night, and was resting comfortably when I got to the hospital. Little did I know how big of a day it was about to be. A few minutes after I got there I was told Jake was going to be moved into a crib. No more isolet. Jake was going to be in a big boy bed! I got to hold him while we got the beds moved around, and then I got to change him. Finally, I get to do some normal mom things. One of the best parts is that he gets to wear clothes now. I am so excited to go home and pick out a few outfits! We had a talk with our favorite practitioner, Candy, today. Jake’s inability to get off the vent yesterday is worrying them. So, she felt it was time to talk to us about a tracheostomy. She told us that they are far from giving up on him, but as he gets older the ET tube will start to become more uncomfortable for him because his gag reflex will start to develop, and it will start to inhibit his development. They are planning on giving him 2 more chances at it, but if he has not succeeded by 40 weeks it will be a reality. If he can stay healthy and just sleep eat and grow I think he still has a good shot at getting off the vent before that. Only time will tell.
Monday, January 17, 2005 10:01 AM CST
Jake weighed 3 pounds 14 ounces today.
Today is a big day! Jake was extibated at 11:15am. The extibation went very well. They put Jake on CPAP with a rate which will help him keep his airways open while he gets used to breathing on his own. He absolutely hates having the prongs up him nose and was very agitated for the first few hours, so they gave him some medication to help him relax a bit. Other than the agitation he was doing beautifully! His blood gases looked good, and his saturation was steady. As the day went on his oxygen needs increased and by 11:30pm his blood gas was not so good. They decided to reintibate him at that time. The reintubation went very well and he had a nice quiet night. I guess he just needs a little more time, and we will try again.
Sunday, January 16, 2005 10:00 AM CST
Jake weighed 3 pounds 14 ounces today.
Jake was a bit agitated last night and today. We are all hoping it is because he’s ready to get the ET tube out. The doctors are giving Jake some steroids to pump him up for tomorrow’s extibation. He is still eating his 35ccs of formula and doing very well with it. Tom got to hold him today, and I think they both enjoyed it very much. Tom and I are really enjoying these quieter days.
Saturday, January 15, 2005 9:59 AM CST
Jake weighed 4 pounds today.
Still quiet today. Jake is now up to 35ccs every 3 hours, which is his max. The IV pole is gone and all of his IV’s are hep locked. Hopefully he will have them all out early next week. I got to hold Jake again today. He really seems to be tolerating it much better these days, and he’s really starting to get heavy when you hold him.
Saturday, January 8, 2005 9:58 AM CST
Jake weighed 4 pounds today.
Still quiet today. Jake is now up to 35ccs every 3 hours, which is his max. The IV pole is gone and all of his IV’s are hep locked. Hopefully he will have them all out early next week. I got to hold Jake again today. He really seems to be tolerating it much better these days, and he’s really starting to get heavy when you hold him.
Friday, January 7, 2005 9:56 AM CST
Jake weighed 4 pounds today.
All is quiet today. They are changing all of his medications over to oral in preparation for his IV’s to come out. He is at 30 ccs every three hours and he’s handling that beautifully. He gained a little more weight then the doctors would have liked, so they gave him an extra dose of lasiks to balance that out. His oxygen needs are still up and down today. Apparently that is because he is trying to breath against the vent so he will continue to do that until they can extibate him. I did get to hold him again today, and they tell me it won’t be long before we can hold him more often.
Thursday, January 13, 2005 9:38 PM CST
Jake weighed 3 pounds 13 ounces today.
They upped Jakes feedings today to 15 ccs every 3 hours. I tell you…the boy likes his food! By the time we leave tonight he will be up to 20 ccs, and hopefully they can have him off of the TPN and lipids soon. He had a follow up echo today, and everything with his heart function looked okay. They put him back on a low dose of fina barb to help with his billiruben which is off just a little bit. Jake seems a little irritable today, and has had a few desaturations. That makes me a little nervous because of last week, but Lori (his primary nurse) assures me that it’s just par for the course. Boy are we grateful for these good days!
Wednesday, January 12, 2005 9:36 PM CST
Jake weighed 3 pounds 11 ounces today.
Jake graduated to a smaller IV pole today! Most of the medications he was on have been discontinued except for a few maintenance things, and he got to start eating today. They started him on 10 ccs of formula every 3 hours. He just plain looks good today. So much more like himself. It was a pretty quiet afternoon, so Jake and I just got to hang out together. Then after Tom got to the hospital I finally got to hold Jake. I has been 8 days since I have held him, and this time I got to hold him the “normal”way. He is now big enough to hold his temp better while he is out of the isolet. In fact it sound like he is not far from graduating to a crib. Yeah!!
Tuesday, January 11, 2005 9:35 PM CST
Jake weighed 3 pounds 11 ounces today.
Jake is still not able to eat anything yet and that is frustrating me. I will feel much better when they can start that up again. We were able to get rid of a few more pumps today, and Jake and I were able to relax a bit. I think we actually went an hour and a half without anyone coming into the room and no alarms going off. He did have his first eye exam today. They checked him for ROP (retinopathy of prematurity). Jake was not amused by the exam. In fact he wound up losing his arterial line in his arm because he was waving his arms around so much. He survived though, and so far there is no sign of the ROP. We will have to keep our finger crossed on that one. His next exam is in two weeks. The rest of the day was quiet with Jake needing only minimal oxygen support
Monday, January 10, 2005 10:26 AM CST
Jake weighed 3 pounds 9 ounces today.
I called this morning to check up on Jake and got quite a surprise. He had been extibated and had been on CPAP for a half an hour. He was breathing on his own! Apparently they had been having trouble venting him that morning due to a leak around his tube. They had decided to put in a new larger tube to fix the leak, and since they had him extibated anyway they might as well see how he does off the vent. The nurse thought he wouldn’t last very long, but I wanted to rush down there anyway. I just had to see him breathing on his own again. We hadn’t seen that since he was less then a week old. When I got down to the hospital he was doing great! Much better then anyone expected, especially after what he had gone though in the last week. He looked comfortable and his breaths were rhythmic and productive. I just kept standing there watching him take each breath. It was one of the most beautiful things I have ever seen. He lasted until about 2:30 which was about 5 hours. At that point they decided to reintibate him with the bigger tube. His breathing had become much more labored and his blood gases weren’t great either. The best thing was that he had shown all of us that he is capable of breathing on his own. He just needs to build up a bit more strength first. The reintibation went well and he spent the rest of the night quietly resting with his oxygen needs down around 30ith no desaturations. What a difference a day makes.
Sunday, January 9, 2005 10:25 AM CST
Jake weighed 3 pounds 14 ounces today.
Tom and I got down to the hospital around 9:00am and things were not going well. His blood pressure was low and his urine output was way down, but his electrolytes were almost back in balance, and there had still been no sign of a seizure. They decided to increase the blood pressure meds he was on and the diuretic to see if they could get things back in line. His BP started to look better, but his urine output seemed to have completely stopped. After what had happened with his PDA surgery, we were VERY worried. His nurse checked all of the connections on his catheter, but found no problems there, so they decided to put Jake back on the bumex drip to see if they could get things going. Just as they were about to start the drip we discovered that his diaper and his bed were soaked. He had over 87 ccs in there! That’s about 3 times what he would output in a day. Since his BP was better as well we headed home to watch the Vikings beat the Packers! Jake was on the mend.
Saturday, January 8, 2005 10:25 AM CST
Jake weighed 3 pounds 6 ounces today.
We called this morning to see how things were going. The nurse told us that not much had changed. They were still tweaking his meds and his vent, but things seemed to be mellowing out. Since things at the hospital sounded quiet we decided to run some errands. The danger in that, of course, is the inevitable call you get from the hospital. As usual, we got one while we were registering at Babies “R” Us. It was one of those “don’t worry, we just wanted to let you know we were going to do this” kind of calls. We finished up our errands and headed over to see our little Jake. Still not much had changed. He seemed to be a bit more stable, but still pretty much knocked out. We watched him sleep for a bit, talked to a bunch of nurses and doctors, and headed for home.
Friday, January 7, 2005 10:24 AM CST
Jake weighed 3 pounds 5 ounces today.
Once again Tom and I were at the hospital by 8:00am for rounds. The plan for the day was pretty simple. Since his electrolytes were much closer to being back in balance, they were going to start backing off on some of his support meds, meet with the neurologist again, and watch him carefully. They were still having trouble maintaining an adequate oxygen saturation, so they were still tinkering with his vent settings. I met with the neurologist and she reassured me that things were looking better. He hadn’t had an official seizure (it has to be more than 10 seconds long) in more than 16 hours. She wanted to keep him on the seizure meds over the weekend and then see him again on Monday. When she left she took her new machine with her. One less machine in the room, and a few less wires on Jake. Yeah! For the rest of the night we maintained a sort of odd balancing act. We were no longer going backwards, but it didn’t feel like we were moving forward either. Tom and I actually went out to dinner that night.
Thursday, January 6, 2005 10:04 PM CST
Jake weighed 4 pounds 2 ounces today. Tom and I were back at the hospital by 8:00am for rounds. Jake had made it through the night. The nurses had not seen a clinical (externally visible) seizure since we left the night before and his electrolytes were very slowly starting to rebalance. The plan for the day was to get another echo, revisit with the neurologist, and continue to work on rebalancing his electrolytes. The echo was VERY good. The tech even asked if he was the same kid. His VSD’s (two small holes in his heart) even looked like they were starting to close! The neurologist had good things to say too. The seizures had gotten much smaller and less frequent over night. He was only having ones that you could see on the machine he was hooked up to. She was very encouraged by that and continued to believe that the seizures were due to the electrolyte imbalance. They started a bumex (a stronger diuretic) drip to help Jake get rid of some of the excess fluid he had accumulated, and his two nurses continued to keep up with all of the other medications they had started him on yesterday. We left the hospital late that evening very exhausted and a little relieved. The fact that his seizures were improving meant that the IVH had not caused the seizures. If it had we had about a 50hance of losing him. As it was we were far from out of the woods, but the wonderful doctors and nurses working on him had stopped the back slide he was on, and gave him the direction he needed to start back in the right direction.
Wednesday, January 5, 2005 10:32 PM CST
Jake weighed in at 3 pounds 6 ounces today. Sarah didn’t sleep well and called the hospital early to see how Jake was doing. Things were not going well. They had been having trouble venting him all night so they tried to reintubate him with a 3.5 tube instead of a 3.0 tube. The bigger tube was just too tight so they went back to the 3.0 tube. I left work and picked Sarah up to go down to the hospital about 9:00 AM. When we got to the hospital Jake was still not oxygenating well and his electrolytes were WAY off. A few days earlier he was given some supplements for phosphorous because it was a little low and Jake apparently overreacted. He went from a 4 (which is low) to an 18 (10 is considered high)! His abnormally high phosphorous level caused his calcium level to plummet. They ordered a heart echo and an abdominal ultrasound to be sure none of those things were the culprit, and started him on a slew of medications. While we sat there watching machine after machine being brought in to give him support and rebalance his electrolytes, Sarah noticed his legs and arms were jerking. We asked Lori, his primary nurse, to look at it and she had the nurse practitioner look at him as well. They concluded it looked like Jake was having seizures. It seemed most likely that he was having seizures due to his electrolyte imbalance, but since he had a grade IV IVH no one was sure. They called a neurologist and she ordered up an EEG. This was started at around 3:00 pm. The EEG takes an hour to setup with them having to glue leads to Jake’s head. He did not like this. As we sat waiting for the EEG to finish, we watched Jake need more and more oxygen support. He was at 1002 and not staying oxygenated well. They added nitric oxide to his oxygen to help him breathe easier, which helped a bit. Jake continued to have fairly short lived seizures that lasted about 1 minute 30 seconds. These seizures seemed to be coming more frequently. They kept telling us that the seizures shouldn’t do any damage to his brain, but that didn’t make them any easier to watch. Doctors, residents, fellows, nurse practitioners and Jake’s two nurses continued to come and go with all of their support staff. It is not a good sign when your son has two nurses for just him to keep up with all the medications and oxygen support that was needed. Finally at about 7:30 PM the neurologist came (She was supposed to be there at 5:00, but had an emergency. Funny I thought we were an emergency.). She set him up on yet another machine. This one was a new toy for them that would monitor his brain waves and keep track of even the slightest seizure. Once they had that set up the neurologist looked through his chart and examined him. At 9:00 we sat down with her to discuss her findings. As it turned out she actually had some decent news (that doesn’t seem to happen very often in the NICU). She had seen no evidence of a neurological reason for the seizures, which in turn meant most likely they were caused by his electrolyte imbalance. If the seizures stopped as his calcium levels rose, we should be in the clear. Only time would tell. In the mean time the neurologist wanted to continue monitoring and medicating the seizures. Around 10:00pm the doctors decided they wanted to put in a central line (a line going from an artery in his neck into his heart) to make it easier to give Jake the calcium faster. A doctor from pediatrics came down to perform the procedure, and we went down to the family room to wait. An hour and a half later they came out to get us. The central line had gone in well. Things seemed to be mellowing out. Jake was no longer having clinically visible seizures and his oxygen needs were a tiny bit more stable. The nurses continued all of the up keep on his medications and blood draws, the doctors continued to tweak his medications, and we continued to sit helplessly next to his isolet. Finally at about 1:30am, with a lot of encouragement from the doctors and Jakes wonderful nurses, Shelby and Ann, we tearfully decided to head home.
Tuesday, January 4, 2005 9:21 PM CST
Jake was 3 pounds 4 ounces today and was up to eating 18 cc's of formula every two hours. Jake was kind of cranky today and was having trouble keeping his oxegyn saturation up. Sarah held Jake today.
Monday, January 3, 2005 10:06 PM CST
We have added some new pictures to the web site today and will try to keep adding more pictures every week. Here is an update on how Jake is doing.
His weight today was about 3 pounds 6 ounces. His last length was 15 inches. They were supposed to measure him today but forgot. Jake is up to eating 12cc's of formula every two hours (30 cc's equals an ounce). He is no longer receiving any nutrition through IV's. Yeah!!! Jake no longer has any IV lines connected to him and is receiving his medications orally. We would like to share our experiences that occurred over the Christmas holiday and will work on posting that story about Jake’s surgeries to the website later this week. Dr. Mammal said his head ultrasound that was taken today looked normal. Yeah!!! Jake threw his first tantrum today for us. He was crying and carrying on for over thirty minutes. When he finally settled down and started sleeping his oxygen needs were the lowest we have seen them in weeks. He must have worn himself out.
Friday, December 17, 2004 4:39 PM CST
Weight 2 lb 2 ounces
Today we found out that the grade II bleed was on both sides of the brain. The radiologist did say that there looked like there was some new blood. They are not concerned about the new blood at this time.
They inserted an arterial line into Jake's arm. They can now take blood via this and they do not have to poke him all the time. Yeah!!
They are still waiting for blood tests to come back to check on his yeast infection to see where it is located. So far it is just in his airway. The infectious disease doctor said he may need treatment for at least 4 weeks if he does have a yeast infection. We won't find out until the middle of next week where the infection actually is located.
Jake is off of insulin now and we are hoping he can keep his sugars at a good level.
Dr. Pokorah mentioned today that if look back at Jake last week and compared him to this week he has made some progress. He did say that he is not out of the woods yet. He needs to get bigger first.
They are going to do another echo on Monday.
Thursday, December 16, 2004 6:33 PM CST
Today Jake had an echo done. The results showed that the hole in his PDA was getting smaller and the blood flow was still going from right to left. The doctor still doesn't think that it will close on it's own. We are still hoping that it will.
Jake also had an ultrsound done on his head to check the status of his bleed. He has a grade IV bleed on one side of his brain and a grade II bleed on the other side of his brain. The preliminary results showed that there appeared to be new blood in the grade IV bleed. We talked to Dr.Pekorah about this and he thought the ultrasound might just have been done from a different angle. He was going to follow up with the radiologist in the morning.
Jake also received a chest x-ray to check on his lungs. The are still cloudy but did show a little improvement.
They did run some tests on his blood and found some yeast cultures growing. They are going to start him on three different anti-biotics to take care of this before it gets going.
His blood gases were good and he was only on about 30 to 39 percent oxegyn all day.
We did get some encouriging news when Dr.Pekorah said that Jake's overall condition was getting better!!
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