Donovan had a real good day yesterday. First, they discontinued caffeine since he hasn’t had any Brady episodes in a few days. His last dose of caffeine was Sunday at 3pm, and he has had no Brady alarms since, even during his feedings. If he starts to have more Bradys then he may have to go back on caffeine, so far so good though.
In the feeding department, the day nurse bottle fed him twice, and he took 19ml and 22ml. Considering his full feed is 32ml, he is getting closer and closer to taking a whole bottle orally! He weighed in at 1700 grams, a 45 gram increase bringing him to 3lb 12oz. That is a 1lb 1oz gain since he was born 3 weeks ago! Also, he is just 100 grams short of truly letting him try to maintain his own body temperature. He is looking really good, his cheeks have filled out and he is sporting a bit of a double chin. I am so proud of Donovan, he just keeps kicking butt!
Donovan continues to progress well. Ever since going on caffeine his Brady episodes are basically non-existent now. From time to time we’ll see a slight drop in heart rate while eating still, but nothing like he was having and it usually jumps back up before any alarms go off. So it looks like the caffeine is working, and the Bradys aren’t much of a concern right now. He continues to gain weight just fine, but I think the more we bottle / breast feed him the less he’ll gain because he is using energy to eat then. I fed him Sunday and he took 12ml from the bottle, that is pretty good! Shannon breast fed him Sunday night, and although the effort was great he only took in 2ml. No worries, he is getting better each day. Both Saturday and Sunday night he gained 35 grams, an ounce a day bringing him to 3lb 10oz which is the most he has weighed. Although weight gain is important, what is also important is he learns to feed without the tube, that is one of the criteria he needs to meet before going home. The other is to maintain his own body temperature. The nurse Saturday night swaddled him up and then turned the heat down on his bed to see how well he would do. She said he did well and she thinks he’ll be just fine at maintaining his own temp soon. So the one big thing we’re focusing on as his parents is him eating all his food on his own, because every day Shannon and I grow more and more weary of leaving him at the hospital. Keep up the great work Donovan, you’ll be home before we know it!
Donovan seemed to be having more and more Bradys, so it was no surprise when he was finally put on caffeine on Tuesday. He had 11 Bradys the day before, most still self corrected, but the steady increase meant it was time to do something about it. The good news is it is working. He has had two a day for the past two days, all quickly self corrected, and none while feeding when he seemed to always have them.
On Monday he gained 10 grams to 3lb 7oz. Tuesday he gained 20 grams which left him at 3lbs 7oz. As usual though, he gained enough Wednesday to bring him to 3lb 9oz, maintaining that 1 ounce per day. His tube feedings continue to go great and everyday he gets better at bottle / breast feeding. Today he is 34 weeks, which is the mark where we can now bottle / breast feed as often as he is showing interest, rather than a max of 2 times a day. Tonight he ate 5ml from the breast, which if you didn’t know, is good. The strangest thing happened tonight though. He weighed in at 3lb 7oz which is a 2oz loss, his first loss since going from 2lbs 14oz to 2lbs 11oz. The nurse said it could be his new bed is calibrated a bit different. Yeah, he got a new bed last night, we kind of broke the old bed. It’s a long story, well a long story to type this late at night, but I’ll eloborate someday. So we’ll see, hopefully tomorrow night he’ll show his usual gains. Things are looking good. Thanks everyone for reading and all the support.
Donovan and I had the night to ourselves. Shannon left about 6:15pm for a nephews birthday party (Happy 5th Ryland!), but since I worked all day I decided to hang back with Donovan. I’m so glad I did, because he was so awake at his 9:00pm care I was able to bottle feed him for the first time! He did well eating 7ml, but he had two Bradycardias while feeding so we decided at that point to finish by gavage feeding. Before his feeding, I also held him for about an hour and 45 minutes. So Donovan and Dad had some awesome bonding time tonight! Mom had her good times too, she gave Donovan a sponge bath earlier in the day. In other news: Chances are good he won’t need the UV light anymore. He has been off the UV light for a few days and hasn’t had his bilirubin checked for a few days. Today it was checked and the level decreased from 6.6 to 6.1. More proof Donovan is kicking butt! He had his vision assessed today. I wasn’t there for it but Shannon said he was a trooper as always. All things look good in the vision department so far and he’ll have another test in two weeks. Oh, and he gained 10 grams which put him at 3lb 7oz now. We didn’t think he would have gained much if any with the busy day he had, so 10 grams is good. Well, I think that is about it for now. Until tomorrow, or when I have time to post again, thanks for reading.
It’s been an amazing 2 weeks. Donovan has been awesome throughout. He’s obvisouly a fighter. I’m so proud of him and how well he has progressed. On Friday he had his largest drop in bilirubin to date- even with only one day under the UV light- from 9.4 to 6.6. This prompted the Doctor to take the light off and not check his bilirubin every night, but rather give him a few days off the light and then check. I believe they’ll be checking his bilirubin today. He didn’t gain any weight Friday, but he made up for that Saturday by gaining 2 ounces. Another ounce on Sunday puts him at 3lbs 6oz. He has been averaging an ounce a day for at least a week now. Every Sunday night he is measured, and his numbers really haven’t changed much since he was born. In fact, his length was slightly less and his head circumference about the same. I figure this measuring business is far from an exact science, between him squirming around and how a nurse might measure I’m not taking much stock in measurements at this point. The steady increase in his weight is worth noting though. Every day now he has more hunger indicators. Sometimes just before feedings he’ll get antsy, open and close his mouth, sometimes stick his hand or arm in his mouth. All good signs for bottle / breast feeding. Each day he seems to get a little better at this process. Practice makes perfect, right. He has progressed so well since being born, sometimes I have to remind myself that if he were still in the womb he’d only be 33 weeks and a couple days. Each day the sore from the IV burn (IV Extravasation) on his ankle looks better. He still has Bradycardia alarms everyday. The nurses aren’t concerned because they self correct and he isn’t having a steady increase each day. They say this is normal for his age and it should correct itself over time. Happy two weeks Donovan, keep up the great work!
This is the earliest I’ve been home from the hospital since he was born, so I am going to make this quick so I can actually get some sleep. After losing 1 ounce last night, he gained 2 ounces tonight bringing him up to 3lbs 3oz and a new record! As I noted in the post before he is under the UV light again, hopefully not for long though. His feedings are going great still. At his 9:00pm feeding tonight he had zero residual and showed more of the hunger signs before and during the feeding. He sucked on a pacifier more which bodes well for more bottle / breast time. His IV burn (IV Extravasation) on his ankle must have popped today. The nurse said it looks fine and appears to be in the healing process.
Last night Donovan showed an ounce loss to 3lb 1oz, which is not a big deal and the nurse even said it was likely because he has been off his IV fluids. Did I mention he doesn’t have an IV in him? After the IV burn in his ankle, his new IV in his forearm started acting up. They tried to tap into another vein a couple times but ultimately decided to go without an IV since his feedings are going so well (at 20ml yesterday, and he ate 5ml from a bottle for the first time!). As long as his feedings keep going well and his glucose tests are good he shouldn’t need the IV. One less thing hooked up to him! Good job Donovan!
His bilirubin had gone up to 8.4, but they didn’t put the UV light back on. Today though it jumped further to 9.3, so he is under the light again. Not a big deal I guess. Also today they moved his feeding tube from his mouth to his nose to help facilitate nipple (bottle or breast) feeding. Speaking of feeding, he moved up to 24ml today, so again his feedings have been going great. Thank you all for the prayers and support, it is working!!
There isn’t enough time in the days right now. Each day I want to upload photos of Donovan (to flickr and facebook), upload videos of Donovan (to youtube, and sometimes facebook and/or flickr) and post updates on Donovan here. Last night Shannon and I didn’t eat dinner until about 11:00pm? I think I fall asleep until about 1:00am. Then work all day, head straight to hospital, and do it all over again. Don’t get me wrong, I’m not complaining, just making excuses for lack of photos, videos and updates.
With that thought, I’m going to try to keep updates shorter and more concise so I can actually get them posted in a timely fashion. As you can see though, even with that intention, posts can drag out. I mean this is my son we’re talking about, being strictly factual is just tough to do, this is MY SON we’re talking about! Sorry, let me get back on track here and talk about what really matters, how Donovan is doing.
His 9pm weigh-in last night showed another ounce gained, up to 3lbs 2oz. As of yesterday he started feeding 16ml every 3 hours. He has been gaining one ounce per day for about 5 days now. He had some residual which was the first in a while, but it only got better so hopefully that trend continued over night. He has been off the UV light the last 2 days and his bilirubin was 6.4 both days. Let’s hope his morning (3am) blood test showed more of the same. Also yesterday they allowed introduction to the nipple. We don’t expect much early but Shannon gets to try each day so this is just another step in the right direction. His IV keeps getting moved around because the site gets irritated. Yesterday he got an IV burn. The vein erodes and the fluids pool under the skin, causing swelling, blistering, etc. Kind of an ugly sore that needs treatment twice a day, the nurses don’t think it will scar. So theI next big goal is his feedings keep going well and in the next few days he could come off the IV altogether. I just found out today that he had 8 Brady episodes the night before last. They all self corrected, but if that continues or they increase he may have to go on caffeine. I don’t have an update yet on how his night went, but hopefully I’ll have the time to post an update tonight.
His tube feedings are going really well. So well that he moved up to 12ml (from 8ml) every 3 hours, and thus the doctors decided to go with a regular IV opposed to a PICC line. This is good news. More good news is he had two bowel movements today (it had been a couple days) and still gained one ounce to make it to the 3 pound mark! Each residual check before feedings is now coming up empty, meaning no undigested or partially digested food, which of course is a good thing. His bilirubin decreased a small amount, from 8.3 to 7.9, but the doctors think that is still borderline so Donovan stayed under the UV light for the day. Mom still got about an hour of skin to skin time tonight though. That’s the short of it, and now this new dad needs to get some rest before the start of the work week.
7:00pm: Donovan is only 5 days old today but continues to progress well. His weigh-in last night showed he gained an ounce, he is up to 2lbs 13oz! Over night his feedings went well and he moved from 4ml every 3 hours to 8ml every 3 hours. His residuals (stomach contents before each feeding) are clearing up and no longer have green tint. He only had 1ml left over before his second 8ml feeding which is good.
Now we need him to produce some good bowl movements to help get the bilirubin levels in check. His level increased from 7.6 to 8.3 overnight so he was put back under the UV light. This was almost expected so not a big deal. He was also having some episodes of bradycardia but went 12 hours over night without and incident. He has had a couple of very mild ones today, but so short lived they didn’t require any stimulation and the nurses just scoffed at the alarm and muted it.
10:45pm: We’re home now for the day and his 9:00pm care time went great. This care time is always big because this is when he is weighed every day (as well as temp taken, diaper change, oxygen sensor moved, normal 3 hour feeding, etc). He still didn’t have a bowel movement, but his weight was up 2 more ounces to 2lbs 15oz! His residual before feeding was good again, 1ml or less and no green tint. This is all good news and shows more signs of progress. If he can continue to tolerate his feeding this well, there is a chance he won’t get a PICC line inserted tomorrow, but rather a regular IV. His original IV in his cord needs to be changed out, and if he is feeding well and doesn’t need the extra nutrition then the PICC line won’t be needed. This would be big because the PICC line is placed near the heart and therefore the risks are higher. So here is hoping Donovan keeps trending up. Until next time, take care everyone, and thanks for all the love, thoughts, prayers and support!
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