Today Trevor had a swallow test to check on his ability to swallow without aspirating. The speech pathologist told us that Trevor aspirated on regular liquids, but he did well when they tried thickened liquids. She said his palatte (spelling?) does not work well and reflux actually comes up into his nose. She said they will have another ENT consult with a scope test to check on the palatte. For now he will only be fed once a day by bottle and will get the rest of his feeds by NG tube. She seemed to be very confident that this will be something that Trevor will outgrow. She said it is due to his extreme prematurity and he will eventually develop full use of his palatte. It just doesn't close off like it should. It worries me, but the nurses and Speech Pathologist said its not a huge problem. It just means he will probably not make it home as soon as we thought, because the occupational therapist will have to work with him and help strengthen his eating skills, longer than what we expected. So......still no tentative discharge date yet. I have a hunch it will be around January 24th. Just a guess :) He weighed 4lbs 11oz tonight (same as the last couple of days). We go to see him have a bath tonight! He HATES taking a bath! I took some pictures and will post some.
Today Trevor "graduated" from the Level 3 NICU (critical care) to the Level 2 NICU (step-down unit)! His next move will be home! The nurses in Level 2 were instantly smitten with him! They all just went on and on today about what a beautiful baby he is. Of course, I am not biased or anything (wink-wink), but he is the most beautiful baby in the world!!! He is barely on any oxygen and weighs a whopping 4lbs 11oz. He is just the most amazing little thing I have ever seen. Trevor is growing so fast that he will probably outgrow some of his preemie clothes by next week. They still fit right now, but I can tell they are going to get too small pretty soon. The tags on them say up to 5lbs and 17 inches in length. His last measurement (about 2 weeks ago) was 16 and 1/4 inches. He will be measured again tomorrow night. Looks like its time for Mommy to do some shopping!!! Almost all of his clothes are preemie size but some are bigger than others. So, we will probably retire the tiniest ones real soon.
The occupational therapist continues to work with him once a day on bottle feeding. The last 2 days he has not done well with taking a bottle. He had a swallow test scheduled for Monday, but it looks like it will be post-poned because he is not taking enough from a bottle to do the test. Thats okay though, he will do it all in his own time. As we have all seen, Trevor has a way of "fixing" things when he is good and ready! I will post tomorrow night with his new length. Thank you to everyone who sent Trevor a message through the Texas Childrens website! It was so exciting to see little cards all over his bed today! I am saving them all so he can read them when he gets older and see how much everyone loved him before they even met him! His new bed space is E104 for those who want to send messages. The link is in the right hand corner on the hospital website www.texaschildrens.org The hospital prints your message on a cute little card and delivers it to Trevor's bedside! How neat is that?!? Trevor's first Christmas Eve has been a good one. This morning me, Dennis and the girls visited with him for about 4 hours. The girls sang Rudolph the Red Nosed Reindeer and Jingle Bells to him. He seemed to enjoy that. He also got his first "manicure" today. I clipped his little nails and filed the edges so they were not sharp. He surprisingly didn't mind it! I assumed he would not like that at all, but he just looked around like it was no big deal. After being serenaded and having a manicure, I dressed him in his little "My First Christmas" outfit and took pictures. The occupational therapist came in to do his bottle feed trial and he did really good today. He was able to take 4ccs and didn't have trouble dropping his stats. He will have a swallow test done on Monday. I posted new pictures from this morning, and they are super cute! Love, Melody
Trevor continues to do well on the CPAP. He had another bottle feeding trial this morning, and he only took 1 cc. The Neonatologist said that because of his paralyzed vocal cord, he is having trouble swallowing properly. Trevor will eventually get the hang of it. It may just take him a little while. The cardiologist has increased the Sotalol (medicine to slow his heart rate). He will take 5 doses of it and then have another 24 hour Holter done. They say he is doing good and responding well to the increase.
Kayla held him today! She was so happy to finally get to hold him. He was very alert and looking around for most of our 4 hour visit. We dressed him in a little Christmas outfit and took some cute pictures of him. I was very surprised that some of the preemie clothes that I brought for him to wear are too small! Can you believe that?!? I have posted pictures of him in his "big boy bed", Kayla holding him, and his Christmas pictures. Enjoy! Trevor is off the CPAP and out of the isolette! He is now in a regular open crib! He even got to try his first bottle today!!! Occupational therapy did a trial with bottle feeding him. He took about 3ccs and that's all he could do. They will try again tomorrow. I am just so excited about his progress. I can't even describe how good it feels. I'm not sure if I have already posted this or not, but he can wear clothes now too! He looks adorable in his little clothes. Of course, we bought all preemie sizes and I washed and dryed them to try to shrink them a little, but they are still baggy on him. But not to worry! He is gaining weight like a pro! He weighs 4lbs 2oz today. He lost just a little bit since yesterday, but thats totally normal. He will have another eye exam in the morning, and I will post about that tomorrow evening.
Okay, now for the very best part! Dr. Abrams had another brain scan done to look at the PVL (damage in his brain). The results came in yesterday. There is NO PVL BRAIN DAMAGE! He does still have a small Grade 1 bleed (this is very minor). For the last 8 weeks, he has had multiple ultrasounds of the brain and they ALL showed a small brain bleed along with Cystic PVL (dead white matter and cysts, meaning brain damage and lost tissue). Now, it's gone. Not there! They say it's impossible for that to "disappear". If it was really there, it's supposed to be permanent. I don't know if the previous scans were mis-interpreted repeatedly , or if there has been an intervention from above. All I know is God is great, and prayers are answered!!! Kayla and Alli met their baby brother for the first time today! It was so exciting! They are in total awe of him. Kayla was a little shy about touching or talking to him, but she finally rubbed his little head and let him hold her finger. Alli was all over him! She wanted to brush his hair, hold his hand, tickle his feet etc. She did get to hold his hand and feel his hair, and I let her see his feet but told her we would have to hold off on tickling them!!! They absolutely love him! Both the girls gave him little kisses on his head before we left. We only stayed about an hour because the NICU is pretty overwhelming, and Alli was concerned that his heart was stopping everytime the monitor would ding. They both were such good girls and were very quiet the entire time. We are so proud of them!
Trevor took another big step today! He is off of the CPAP again! I am pretty confident that he will remain off of it this time. The neonatologist had some great news for us today, and Trevor may begin eating from a bottle this evening. I don't think today could get any better! I posted 3 new pictures just now so everyone could see how Trevor looks without the CPAP, and see our whole family together for the first time. I will post more later. Love, Melody Last night Trevor's cardiologist had him transferred to Texas Children's Hospital so he could observe him more closely because his heart rate was back in the 200's. It was very scary for me, because I didn't know what to expect, and I really didn't want him moved. The Kangaroo Crew from TCH came over to transport him at about 8:30pm. That was amazing!!! They had every piece of life-saving equipment that Trevor could even possibly need, right there on the transport isolette and in their backpacks! I was allowed to walk (well...run actually) down the hall with them as they wheeled him out. I even got to ride in the ambulance with him. He tolerated the ride pretty good. At first he was crying, but settled down pretty quick. When we got to TCH everything was ready for him and the transition was very easy. The cardio team decided to start him on a medicine for Atrial Tachycardia. We finally got a diagnosis! Atrial Tachycardia means that the top section of the heart is beating too fast. It is NOT life-threatening, and is easily controlled. What a blessing!!! He is doing GREAT!!! His heart rate has been between 145 and 160 all day today. They were even able to lower his CPAP pressure from 10 to 8. They plan on lowering it again tomorrow. I am so thankful that they finally figured out what his problem is, and now they are fixing it!!! The cardiologist said that Trevor should outgrow this problem and not have to be on medicine for it forever. The doctors and nurses at TCH seem to be really good. I liked them all. This morning around 2am Trevor's heart rate went over 250 beats per minute. Of course, it scared the doctor and they began trying to get it down with medication. It did not work, so they stopped Trevor's feedings (incase a surgery was needed) and gave him a bolus of normal saline incase he was a little dehydrated. All labs came back normal. He did not have an infection and his electrolytes were normal, meaning no dehydration. He was monitored very closely over the next few hours.
Then, Trevor's Gaurdian Angel stepped in. His heart rate went down to 155, and stayed there!!! When I met with the neonatoloist this morning, he was puzzled. He had no explaination as to how, or why Trevor's heart rate regulated on its own, just hours after being so dangerously high. No one can figure it out. The cardiac team will review his Holter monitor tonight to try to figure out what was causing such an extreme heart rate. He will also have an Echocardiogram (ultasound of the heart). All day today Trevor has been PERFECTLY fine! All his vitals are well within normal range and they are letting him have formula again. It's just a big "question mark" at this point in time. No one can figure it out! I already have an explaination. I know that last night, my prayers were heard. For the last few days Trevor's heart rate has been elevated. He had an ENT consult yesterday and the testing revealed that his left vocal cord is paralyzed. I discussed this at length with the neonatologist today, and he assured me that this has nothing to do with his high heart rate. I left the hospital around 1pm today and the neonatologist called me at 6pm tonight to tell me that Trevor's heart rate had increased and they tried a medication to slow it down, but it did not work. He called the head cardiologist at Texas Children's Hospital for consultation. The cardiologist wanted an EKG sent to him for review. They did the EKG and sent it to him, but he couldn't find any reason why Trevor's heart rate was so high, so he asked them to do another one. They did another EKG and sent it to the cardiologist. Again, he could not find a reason for the elevated heart rate. Trevor will be on a Holter heart monitor that records his heart rate and patterns for tonight and in the morning the cardiac team from Texas Children's will come over to evaluate Trevor. I'm not sure what the next step after that is, but he may have to be transferred to Texas Children's. We will not know until tomorrow. Our little fighter really needs prayers tonight. I will update again when I find out more information.
It has been such a rollercoaster ride this week. Trevor was doing better yesterday, but today his chest x-ray showed more fluid accumulating in his lungs. Dr. Degeusman has added the other diuretic to Trevor's regimen. His heart rate and respirations are too high again. We went tonight to see him, but I couldn't hold him because his little heart rate was between 190-200 bpm and his respirations were averaging around 90. The ideal heart rate for him is 130-180 and the ideal respiratory rate is 20-40. The nurse practitioner said that even though it is concerning, it is definately common among very premature babies like Trevor. They will continue to monitor him closely and adjust medications as necessary. With Trevor taking 2 diuretics, he will now have his kidneys monitored by ultrasound since diuretics are hard on the kidneys. He will have another brain scan on Monday, and a kidney and heart ultrasound on Thursday if not sooner. They want to check on his heart because the neonatologist said when the lungs are affected in small babies, it is possible to affect the heart as well. I will post again tomorrow. I don't have any pictures to post this time because I did not want to aggitate him at all today. Hopefully I can take more tomorrow or Monday. Until next time...Just keep praying for him. Love, Melody
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