Tuesday, July 26, 2011
Happy 2 Months!
I wanted to quickly say Happy Brithday to Linc! I cannot believe Lincoln is 2 months old already! Time is flying by! He's growing so fast! I will post more about his birthday later on...with pictures, of course!
Monday, July 25, 2011
Bottles, Baby!
The big news this past week is that Lincoln began taking bottles for his feeding when I cannot be with him. He has done really well with going back and forth from bottle to breast. Last Sumday I gave him a bottle, just to try it out. He did great for his first time! He as able to drink 20mls or so (over half an oz) and didn't choke. I was able to get an idea of what type of volume he may be getting at the breast by watching him eat from a bottle and being able to measure how much was left after Linc called it quits. Last Monday I asked speech therapy come and evaluate Lincoln for bottles. They fed him with different flow nipples to see which he prefered and showed me a few tricks on holding him while he eats and what signs to look for that may mean he needs a break. Since Lincoln is new to bottle feeding, he doesn't always take a breathing break when he needs to. Dan was able to feed Lincoln Monday night for the first time!
After three combinations of bottles and nipples throughout the week, Lincoln has setted with a Dr. Browns bottle with a preemie size nipple (lowest flow available) that he seems to do best with. He has taken several half bottles and two full bottles so far! He does sleep through usually two out of his eight feedings, but he is doing great! The staff at Children's all agree that Lincoln is probably the best oral feeder they have seen out of all the past CDH patients. Whatever volume Linc doesn't take orally is just put in his NG tube so that he still gets his full feed. Although Lincoln and I both enjoy our breastfeeding sessions, the doctors and I want to be able to see how much of a volume Lincoln is taking orally. We still get a few breastfeeding sessions in per day, but most of Lincoln's PO feedings are by bottle now.
Lincoln has gained weight this past week but is still on the low end of acceptable, so the docs want to increase Lincoln's calorie intake. They tried fortifying his milk this week to give him more calories without increaseing the volume he takes in, but he was intolerable of it, so increasing the volume of milk he takes every feeding is a better option for his tummy's sake! Linc has become very active and burns a lot of energy while he is awake. Adding more PO feedings also increases the calories he burns every day.
As for Lincolns respiratory status and narcotics, he is still on 2L of flow and getting morphine every 3 hours. Same settings as last week. They tried to wean him to one liter of flow and morphine every 6 hours this week (not on the same day) but Lincoln wasn't quite ready. He just needs more time to grow. Still no word on when he can come home. The bad (and good) thing about being under the care of teams of doctors is that they all have to agree. Each doctor I speak with individually tells me different requirements (off/on low oxygen, feeding tube/all oral feedings, morphine etc.) but they all agree that he is not quite ready yet.
After three combinations of bottles and nipples throughout the week, Lincoln has setted with a Dr. Browns bottle with a preemie size nipple (lowest flow available) that he seems to do best with. He has taken several half bottles and two full bottles so far! He does sleep through usually two out of his eight feedings, but he is doing great! The staff at Children's all agree that Lincoln is probably the best oral feeder they have seen out of all the past CDH patients. Whatever volume Linc doesn't take orally is just put in his NG tube so that he still gets his full feed. Although Lincoln and I both enjoy our breastfeeding sessions, the doctors and I want to be able to see how much of a volume Lincoln is taking orally. We still get a few breastfeeding sessions in per day, but most of Lincoln's PO feedings are by bottle now.
Lincoln has gained weight this past week but is still on the low end of acceptable, so the docs want to increase Lincoln's calorie intake. They tried fortifying his milk this week to give him more calories without increaseing the volume he takes in, but he was intolerable of it, so increasing the volume of milk he takes every feeding is a better option for his tummy's sake! Linc has become very active and burns a lot of energy while he is awake. Adding more PO feedings also increases the calories he burns every day.
As for Lincolns respiratory status and narcotics, he is still on 2L of flow and getting morphine every 3 hours. Same settings as last week. They tried to wean him to one liter of flow and morphine every 6 hours this week (not on the same day) but Lincoln wasn't quite ready. He just needs more time to grow. Still no word on when he can come home. The bad (and good) thing about being under the care of teams of doctors is that they all have to agree. Each doctor I speak with individually tells me different requirements (off/on low oxygen, feeding tube/all oral feedings, morphine etc.) but they all agree that he is not quite ready yet.
Saturday, July 16, 2011
One Less Line
It has been difficult to find time to post now that I'm back to work. I have been getting up at 3:30 am to be at work at 5am. This way I can get to the hospital in time for Lincoln's 2pm feeding. I have been able to get two or three nursing sessions in before leaving each night around 8:30 or 9 pm. This leaves me with about four hours of sleep. I wouldn't be getting much sleep if I had a 7 week old baby at home either, right? Breastfeeding has been going great. Lincoln latches on pretty well and consistently nurses for 25 minutes or more. It's difficult to say how much milk he is getting, so the nurses just give half of Lincoln's feed through his tube if he does well. Otherwise he gets his full feed on top of the breast. I'm thinking of starting him on bottle feeds next week. He will need to take a few bottles even when he is home with me since he is getting protein and iron added twice a day for a nutrition boost.
Lincoln's last IV med was switched to an oral dose yesterday. So around 11 am his IV line was taken out! After 51 days, Lincoln no longer needs an IV! It's one less thing keeping him attached to his bed, and it's so much easier to pick him up now. I don't have to worry about tangled lines and pulling his arm. It also means he can wear clothes the proper way, with both arms in! He still gets morphine by mouth every 3 hours. He is on a wean schedule for that to be taken away over the next few weeks. The morphine just helps Lincoln to not withdrawal from the IV drips he was on. He doesn't need it for any pain. He also gets his hydrocortisone steroid and sildenifil (hypertension med) orally. His steroid is also on a wean schedule, but the sildenifil will most likely come home with him, and he will just out grow the dose.
Linc has progressing nicely with his breathing, too. He is now on 2 liters of flow and usually between 26-32% on his oxygen. I think once he is able to get to 1 liter, the high humidity can be turned off. Linc needs the air to be humidified in his tubing due to the high flow rates. Otherwise, his nasal passage could dry out and give him nose bleeds.
As Lincoln continues to do well, he is getting less labs done on a regular basis. He now only has his blood gass, blood count and electrolytes checked twice a week (vs the Q4 schedule he was once on). It is wonderful to see Lincoln getting better everyday. He has started to move his arms and legs a lot more. He used to always keep them tight to his body and hands in fists in a defensive mode. I think he is feeling more comfortable and happy now that he is getting poked a lot less. Although Linc is not gaining as much weight as the doctors would like to see, he is still beefing up. He is getting a double chin and rolls on his arms and legs. He has a very expressive face, too. He does smile occasionally now, but only when he is sleepy (or gassy). He hasn't begun to talk yet, but he does a lot of grunting to communicate. It's just adorable!
The goal for Lincoln to come home is to get him off of oxygen assistance and taking every feed orally without supplementing through his feeding tube. If for some reason it looks like Lincoln will not be able to accomplish either of those in a reasonable time, he can go home with a version of both. So far Lincoln has not shown any indication that he will not continue to do well and should be able to accomplish both goals, say his docs. They still cannot give an estimated discharge date though. It will all depend on how quickly Lincoln progresses and when he is ready.
Lincoln's last IV med was switched to an oral dose yesterday. So around 11 am his IV line was taken out! After 51 days, Lincoln no longer needs an IV! It's one less thing keeping him attached to his bed, and it's so much easier to pick him up now. I don't have to worry about tangled lines and pulling his arm. It also means he can wear clothes the proper way, with both arms in! He still gets morphine by mouth every 3 hours. He is on a wean schedule for that to be taken away over the next few weeks. The morphine just helps Lincoln to not withdrawal from the IV drips he was on. He doesn't need it for any pain. He also gets his hydrocortisone steroid and sildenifil (hypertension med) orally. His steroid is also on a wean schedule, but the sildenifil will most likely come home with him, and he will just out grow the dose.
Linc has progressing nicely with his breathing, too. He is now on 2 liters of flow and usually between 26-32% on his oxygen. I think once he is able to get to 1 liter, the high humidity can be turned off. Linc needs the air to be humidified in his tubing due to the high flow rates. Otherwise, his nasal passage could dry out and give him nose bleeds.
As Lincoln continues to do well, he is getting less labs done on a regular basis. He now only has his blood gass, blood count and electrolytes checked twice a week (vs the Q4 schedule he was once on). It is wonderful to see Lincoln getting better everyday. He has started to move his arms and legs a lot more. He used to always keep them tight to his body and hands in fists in a defensive mode. I think he is feeling more comfortable and happy now that he is getting poked a lot less. Although Linc is not gaining as much weight as the doctors would like to see, he is still beefing up. He is getting a double chin and rolls on his arms and legs. He has a very expressive face, too. He does smile occasionally now, but only when he is sleepy (or gassy). He hasn't begun to talk yet, but he does a lot of grunting to communicate. It's just adorable!
The goal for Lincoln to come home is to get him off of oxygen assistance and taking every feed orally without supplementing through his feeding tube. If for some reason it looks like Lincoln will not be able to accomplish either of those in a reasonable time, he can go home with a version of both. So far Lincoln has not shown any indication that he will not continue to do well and should be able to accomplish both goals, say his docs. They still cannot give an estimated discharge date though. It will all depend on how quickly Lincoln progresses and when he is ready.
Monday, July 11, 2011
Mommy Milestone 2.0!
Yesterday the doctors wrote for Lincoln's oxygen flow to be turned down to 3 liters. They wanted to give him 24 hours to adjust and be sure he was breathing comfortably on the lower flow before they allowed him to try oral feeding. He did great with the flow, so today he tried feeding the natural way with Mommy for the first time! (for Linc and me!) I was a bit nervous, and the setting was less than ideal being in a NICU room with tubes and monitors (not exactly relaxing) but we made due. Lincoln took a minute to adjust to not being swaddled but he caught on quickly to breastfeeding. (I'd like to think I wasn't half bad either at my part) So all in all, it was a successful first try! Lincoln did not choke once and seemed content. The staff is very willing to respect my wishes to exclusively breastfeeding for at least a few days before trying bottle feeding with Lincoln. He will still be getting his regular feedings through his tube, but practicing oral feeding will be only with me. Obviously, I am back at work so I will not be there for every feeding, but we can have a few sessions every evening. Eventually, as Lincoln is more willing to feed more often, he will need to take bottles at night since I cannot be at the hospital around the clock. I just wanted to get somewhat of an intro to breastfeeding so that we can work on it more once Lincoln comes home.
Sorry, no pictures for this Mommy Milestone! But it was just as special!
Sorry, no pictures for this Mommy Milestone! But it was just as special!
Saturday, July 9, 2011
Steady as he goes
A few major accomplishments for Lincoln the past few days:
He is now off of the IV TPN and lipid diet and taking only breast milk for food. He is now getting 50mls every three hours through his feeding tube. His dose increases every 12 hours, and is fed on a pump over an hour. The goal for Lincoln is somewhere around 75mls every three hours. Lincoln has been having some tummy trouble, so feeding with a pump over a longer period seems to be helping. His stooling has slowed a bit (a complication from the narcotics) but he is still doing well. Lincoln has begun speech therapy along with his physical therapy to prepare him for bottle feeding. The therapy is mostly assessing his sucking ability and allowing him small tastings of breast milk with his feeding. He gets a few drops at a time by dipping his binky in some breast milk. He has done a great job so far and hasn't choked once! He seems to be ready to try oral feeding as soon as his oxygen flows turned down a bit more!
Lincoln's flow has been turned down to 4 liters with oxygen percents between 25 and 35. His breathing rates have improved some too. He still has periods where he is breathing fast, usually when he gets upset, but overall he is breathing more evenly and easily. His round of antibiotics and albuterol for his suspected lung infection have been discontinued. As he continues to do well his flow will be turned down more and he will be allowed to begin feeding by mouth.
As far as his IV drips, Lincoln is no longer on Fentynal! His main narcotic that he has been on since birth for pain and sedation was turned off yesterday morning. He now gets a dose of morphine every three hours through his feeding tube. The morphine kind of takes the place of the fentynal in Linc's body, helping him to not have withdrawals as he gets over the wean. He will be slowly weaned of the oral morphine over the next 10 days or so. Linc is still on two sedation drips, one of which is due to be shut off today. He will then be down to only one drip and one IV med given every few hours. Only two more to wean and he will no longer need his IV! What an accomplishment!
Lincoln has been showings more and more of his personality as he is feeling more healthy. Everyday he makes great strides in tolerating more stimulation. It is wonderful to see him calm and alert for long stretches several times a day. He is also begining to allow me to gently massage him, where as before he would not tolerate any stroking sensations. Of course he is still fussy sometimes, but I cannot blame him! Even babies without CDH are fussy for various reasons! We are now to the point were a lot of Lincoln's crying is due to normal baby issues and that is wonderful to say! He is doing so incredible with everything he has been given to deal with! I cannot believe he is the same baby who was so sick on ECMO just three and a half weeks ago. He is my amazing little man!
He is now off of the IV TPN and lipid diet and taking only breast milk for food. He is now getting 50mls every three hours through his feeding tube. His dose increases every 12 hours, and is fed on a pump over an hour. The goal for Lincoln is somewhere around 75mls every three hours. Lincoln has been having some tummy trouble, so feeding with a pump over a longer period seems to be helping. His stooling has slowed a bit (a complication from the narcotics) but he is still doing well. Lincoln has begun speech therapy along with his physical therapy to prepare him for bottle feeding. The therapy is mostly assessing his sucking ability and allowing him small tastings of breast milk with his feeding. He gets a few drops at a time by dipping his binky in some breast milk. He has done a great job so far and hasn't choked once! He seems to be ready to try oral feeding as soon as his oxygen flows turned down a bit more!
Lincoln's flow has been turned down to 4 liters with oxygen percents between 25 and 35. His breathing rates have improved some too. He still has periods where he is breathing fast, usually when he gets upset, but overall he is breathing more evenly and easily. His round of antibiotics and albuterol for his suspected lung infection have been discontinued. As he continues to do well his flow will be turned down more and he will be allowed to begin feeding by mouth.
As far as his IV drips, Lincoln is no longer on Fentynal! His main narcotic that he has been on since birth for pain and sedation was turned off yesterday morning. He now gets a dose of morphine every three hours through his feeding tube. The morphine kind of takes the place of the fentynal in Linc's body, helping him to not have withdrawals as he gets over the wean. He will be slowly weaned of the oral morphine over the next 10 days or so. Linc is still on two sedation drips, one of which is due to be shut off today. He will then be down to only one drip and one IV med given every few hours. Only two more to wean and he will no longer need his IV! What an accomplishment!
Lincoln has been showings more and more of his personality as he is feeling more healthy. Everyday he makes great strides in tolerating more stimulation. It is wonderful to see him calm and alert for long stretches several times a day. He is also begining to allow me to gently massage him, where as before he would not tolerate any stroking sensations. Of course he is still fussy sometimes, but I cannot blame him! Even babies without CDH are fussy for various reasons! We are now to the point were a lot of Lincoln's crying is due to normal baby issues and that is wonderful to say! He is doing so incredible with everything he has been given to deal with! I cannot believe he is the same baby who was so sick on ECMO just three and a half weeks ago. He is my amazing little man!
Wednesday, July 6, 2011
6 Weeks Old
What better way to celebrate Lincoln's 6th week than a bunch of pics! Since I will be busy tomorrow, as it is my first day back to work, I thought I should post for Lincoln's "birthday" tonight. All of these were taken in the past week.
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| Lincoln's "big boy bed" |
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| 1st outfit, modified by MOMMY |
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| shoulder modification to accommodate Linc's PICC line |
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| Tummy Time on his Boppy! Linc did great. He worked on his neck muscles for a few minutes and then took an hour nap! |
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| Lovin his mobile! (You can see it just at the top of the photo) |
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| Lincoln still likes to sleep all stretched out! |
Tuesday, July 5, 2011
Hooray for Poopy Pants
He is also working on reducing his narcotics again. This time the weans are a bit slower to keep from triggering withdrawals again. The docs also started giving Lincoln Albuterol as an inhalant with his vibration PD treatment to help open his lungs. It seems to he working and Linc is not having to work as hard to breath (less head bobbing and chest heaving). he will continue his antibiotics for a 7 day course just as a precaution. Since his x ray Friday showed some fluid in his lungs, the docs are just treating him for mild pneumonia, even though his cultures have not grown anything.
The nurses had told me that I could bring in some clothes for Linc to wear, but he still has his PICC line in his forearm, so getting clothes on was going to be challenging. So, I modified a onesie so that the right shoulder opens up with snaps. It fit perfectly! (yes, it is a newborn size) Lincoln was just adorable in his first outfit! He has been a little hot today, so he is naked again, but it was fun while it lasted!
Friday, July 1, 2011
My Little Junky
Lincoln has been doing great with increasing his feedings over the past few days. Two of his three sedation/narcotic medications were weaned also. He was up to 1/2 an ounce of breast milk every three hours yesterday when he started showing signs of withdrawal. His heart rate was high, even at rest, and his breathing rate was elevated, too. He started running a fever of 100.9 and was sweaty and moaning a lot in the afternoon. Withdrawal symptoms can appear similar to infection symptoms, so the doctors wanted to be sure Lincoln was just having a hard time with the weans, and not sick again.
The nurse drew some blood to send to the lab for culture and blood counts. She also gave him a spot dose of withdrawal medicine to see if that helped him. She also gave him a suppository to help him move his food through since he had not digested his last feeding. (Before each feeding they pull his stomach contents out through his feeding tube to be sure he is digesting the milk and they don't overfeed him if he is not.) Then around 5pm, he puked. The medicine for withdrawals didn't seem to help much, although his fever did come down some. So, they decided to increase one of the sedation meds that had been weaned yesterday. They also gave him a bolus of the same med to help him feel better. His blood they drew for labs clotted before they could be tested, so they had to be re-drawn. (Poor baby! More heel sticks!)
Lincoln didn't look much better by the time Dan and I left the hospital around 7:30pm, although he was able to fall asleep. He was working really hard to breath (chest heaving and flairing his nostrils) so they decided to get a chest x-ray around 10pm. It showed that some of his right lung had closed again due to secretion build up. It could be from an infection (possibly the same infection as before, just a new flare up) or from having his diuretic discontinued yesterday. They stopped Lincoln's feeds to rule out feeding intolerance and he was put back on antibiotics. They also increased his oxygen percentage on his flow to give him a boost. His second blood draw was able to be tested but came back showing some funny numbers, so they are ran the tests for a third time this morning and they showed no increase in white blood cells (meaning infection is unlikely) and not as good of a blood gas (probably due to the secretion build up).
At this point they cannot be sure whether he has an infection, is having withdrawals from weaning his narcotics, or both, but it looks like the signs are pointing more towards withdrawal. It didn't help the decisions made last night that Lincoln ended up having three different nurses over the night shift, two of which were not familiar with him. Another baby in the NICU had to be put on ECMO in an emergent situation around shift change, so they had to switch some nurses around to accommodate that little guy. (Specially trained nurses are required for ECMO and dialysis.) I was concerned about Lincoln being ill again. This is now possibly the third infection he has had, but the doctor said it is common for babies with CDH to get sick a lot and not to worry. Lincoln's lungs are very fragile, so just a small bug can have a large impact for him. If Linc does have an infection, they are treating it with antibiotics and will watch for growth in his cultures over the next 48 hours to be sure. Regardless of what's going on, he does seem to feel a bit better this morning, as compared to last night, which is reassuring. He is still struggling a bit to breath, and his heart rate is still high. He does not have a fever anymore though and was able to stool last night. We will have to wait to see what the doctors decide for a game plan for the next few days, since Lincoln has decided he's not going to follow the sedation wean they had mapped out for him.
The nurse drew some blood to send to the lab for culture and blood counts. She also gave him a spot dose of withdrawal medicine to see if that helped him. She also gave him a suppository to help him move his food through since he had not digested his last feeding. (Before each feeding they pull his stomach contents out through his feeding tube to be sure he is digesting the milk and they don't overfeed him if he is not.) Then around 5pm, he puked. The medicine for withdrawals didn't seem to help much, although his fever did come down some. So, they decided to increase one of the sedation meds that had been weaned yesterday. They also gave him a bolus of the same med to help him feel better. His blood they drew for labs clotted before they could be tested, so they had to be re-drawn. (Poor baby! More heel sticks!)
Lincoln didn't look much better by the time Dan and I left the hospital around 7:30pm, although he was able to fall asleep. He was working really hard to breath (chest heaving and flairing his nostrils) so they decided to get a chest x-ray around 10pm. It showed that some of his right lung had closed again due to secretion build up. It could be from an infection (possibly the same infection as before, just a new flare up) or from having his diuretic discontinued yesterday. They stopped Lincoln's feeds to rule out feeding intolerance and he was put back on antibiotics. They also increased his oxygen percentage on his flow to give him a boost. His second blood draw was able to be tested but came back showing some funny numbers, so they are ran the tests for a third time this morning and they showed no increase in white blood cells (meaning infection is unlikely) and not as good of a blood gas (probably due to the secretion build up).
At this point they cannot be sure whether he has an infection, is having withdrawals from weaning his narcotics, or both, but it looks like the signs are pointing more towards withdrawal. It didn't help the decisions made last night that Lincoln ended up having three different nurses over the night shift, two of which were not familiar with him. Another baby in the NICU had to be put on ECMO in an emergent situation around shift change, so they had to switch some nurses around to accommodate that little guy. (Specially trained nurses are required for ECMO and dialysis.) I was concerned about Lincoln being ill again. This is now possibly the third infection he has had, but the doctor said it is common for babies with CDH to get sick a lot and not to worry. Lincoln's lungs are very fragile, so just a small bug can have a large impact for him. If Linc does have an infection, they are treating it with antibiotics and will watch for growth in his cultures over the next 48 hours to be sure. Regardless of what's going on, he does seem to feel a bit better this morning, as compared to last night, which is reassuring. He is still struggling a bit to breath, and his heart rate is still high. He does not have a fever anymore though and was able to stool last night. We will have to wait to see what the doctors decide for a game plan for the next few days, since Lincoln has decided he's not going to follow the sedation wean they had mapped out for him.
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