We've started a new blog for Masinja, and now that he's home, this chapter of our lives is closed. It's a chapter we will never forget, but one that must be put away, and the focus put on the future. Masinja's new blog can be found here:
i-kfc.blogspot.com
It will be a weekly blog, so tune in every Sunday for updates... We know he has a lot of people cheering for him, so we'll continue as long as people want to hear about his progress.
That's all for the Chronicles.
Peace,
T.M.
Sunday, June 17, 2007
Sunday, June 10, 2007
Daily Update - 9 June 2007
Yea, I'm 21 weeks old today, and I get to celebrate it by actually coming HOME!
Masinja finished his 140+ day ninternship today. He's finally home with us and it feels awesome and weird all at the same time. We've gotten so used to visiting him at the hospital that we can't really believe he's home.
This will be the last daily update. I will go to weekly updates on his progress. Spending time on the computer will play second fiddle to my boy. I didn't get much sleep with him in the hospital, and I feel like I'll probably get even less now that he's home.
That's all for today.
Peace,
T.M.
Masinja finished his 140+ day ninternship today. He's finally home with us and it feels awesome and weird all at the same time. We've gotten so used to visiting him at the hospital that we can't really believe he's home.
This will be the last daily update. I will go to weekly updates on his progress. Spending time on the computer will play second fiddle to my boy. I didn't get much sleep with him in the hospital, and I feel like I'll probably get even less now that he's home.
That's all for today.
Peace,
T.M.
Friday, June 8, 2007
Daily Update - 8 June 2007
Day 14 Post-Op.
Masinja is supposed to come home tomorrow! He's having a sleep study done, and if everything looks good, he should be on his way home. Nothing is ever concrete, so we're still waiting with anticipation, but it's happy anticipation versus scared anticipation. It's nice to feel good stress for the first time in a long time.
We'll definitely let everyone know if he comes home tomorrow.
That's pretty much all for today.
Peace,
T.M.
Masinja is supposed to come home tomorrow! He's having a sleep study done, and if everything looks good, he should be on his way home. Nothing is ever concrete, so we're still waiting with anticipation, but it's happy anticipation versus scared anticipation. It's nice to feel good stress for the first time in a long time.
We'll definitely let everyone know if he comes home tomorrow.
That's pretty much all for today.
Peace,
T.M.
Daily Update - 7 June 2007
Day 13 Post-Op.
Masinja had his CAT scan today, and everything looked good. There weren't any changes from his last ultrasound, so he's doing well in that department. It looks like he's even closer to coming home now.
We'll let you know as soon as we get a "date", but it won't be concrete until he's actually leaving, so we have to contain the excitement.
That's all for today.
Peace,
T.M.
Masinja had his CAT scan today, and everything looked good. There weren't any changes from his last ultrasound, so he's doing well in that department. It looks like he's even closer to coming home now.
We'll let you know as soon as we get a "date", but it won't be concrete until he's actually leaving, so we have to contain the excitement.
That's all for today.
Peace,
T.M.
Wednesday, June 6, 2007
Daily Update - 6 June 2007
Day 12 Post-Op.
Masinja didn't have his CAT scan again today. His doc has a family emergency, so we're not sure when she'll be back to do the scan, and hopefully do his discharge paperwork shortly thereafter. We'll circle the wagons until then and wait. Patience is a virtue, and I'll keep telling myself that, and maybe I might believe it one of these days.
Otherwise, everything is still normal and boring.
That's all for today.
Peace,
T.M.
Masinja didn't have his CAT scan again today. His doc has a family emergency, so we're not sure when she'll be back to do the scan, and hopefully do his discharge paperwork shortly thereafter. We'll circle the wagons until then and wait. Patience is a virtue, and I'll keep telling myself that, and maybe I might believe it one of these days.
Otherwise, everything is still normal and boring.
That's all for today.
Peace,
T.M.
Daily Update - 5 June 2007
Day 11 Post-Op.
Masinja didn't have his CAT scan today. His doc went home over the weekend, and hasn't returned yet. Maybe tomorrow.
Other than that, it was pretty boring. He's still eating well, and his G.I. tract seems to be in good working order, so we wait in the holding pattern, again.
That's all for today.
Peace,
T.M.
Masinja didn't have his CAT scan today. His doc went home over the weekend, and hasn't returned yet. Maybe tomorrow.
Other than that, it was pretty boring. He's still eating well, and his G.I. tract seems to be in good working order, so we wait in the holding pattern, again.
That's all for today.
Peace,
T.M.
Tuesday, June 5, 2007
Daily Update - 4 June 2007
Day 10 Post-Op.
We had our NICU discharge class today. It's getting really close to Masinja coming home. We won't be able to take him out very much, as his immune system will be a little weaker than a normal baby's, so it'll probably be a couple of weeks before we can take him to church and such.
We'll let you know when he's discharged and home. We still don't know an exact date, so we'll keep playing it by ear. He still requires his CAT scan, which should be tomorrow, so we'll see.
That's all for today.
Peace,
T.M.
We had our NICU discharge class today. It's getting really close to Masinja coming home. We won't be able to take him out very much, as his immune system will be a little weaker than a normal baby's, so it'll probably be a couple of weeks before we can take him to church and such.
We'll let you know when he's discharged and home. We still don't know an exact date, so we'll keep playing it by ear. He still requires his CAT scan, which should be tomorrow, so we'll see.
That's all for today.
Peace,
T.M.
Daily Update - 3 Jun 2007
Day 9 Post-Op.
Nothing exciting today. Masinja continues to get stronger and eat more. He's getting pretty upset when he doesn't eat on time. He's also starting to want to be held more. He's been hanging around T.M.M. too much lately.
That's all for today.
Peace,
T.M.
Nothing exciting today. Masinja continues to get stronger and eat more. He's getting pretty upset when he doesn't eat on time. He's also starting to want to be held more. He's been hanging around T.M.M. too much lately.
That's all for today.
Peace,
T.M.
Saturday, June 2, 2007
Daily Update - 2 June 2007
Day 8 Post-Op.
Yea, I'm 20 weeks old today!
Masinja had a pretty boring day. He ate, slept, then ate and slept some more. He's getting really grumpy when you don't hold him enough, so we're holding him as much as possible.
T.M.M. and I gave him a bath tonight, and he's way too big for the bathtub they have. They need to get bigger ones for the larger babies that are in the unit.
Masinja's supposed to move to a different room for babies that are ready to be discharged. We think he'll go over tomorrow. We can't wait for him to come home!
That's all for today.
Peace,
T.M.
Yea, I'm 20 weeks old today!
Masinja had a pretty boring day. He ate, slept, then ate and slept some more. He's getting really grumpy when you don't hold him enough, so we're holding him as much as possible.
T.M.M. and I gave him a bath tonight, and he's way too big for the bathtub they have. They need to get bigger ones for the larger babies that are in the unit.
Masinja's supposed to move to a different room for babies that are ready to be discharged. We think he'll go over tomorrow. We can't wait for him to come home!
That's all for today.
Peace,
T.M.
Daily Update - 1 June 2007
Day 7 Post-Op.
Masinja's CAT scan is scheduled for Tuesday, 5 Jun. After that, the doc has no reason to keep him in the NICU anymore. He's already back up to 30z (90cc) at each feeding and thriving. It's almost surreal to us that he's actually ready to come home.
We have his discharge class on Monday, so we get to learn the baby CPR and good things like that. I think the reality of him coming home will hit us even more after that class. It's been so hard to walk by that sign-up sheet and watch other babies go home week after week, but it's also been nice, because they don't have to stay in the NICU anymore, either.
I guess I'm going to have to start a new blog when he comes home. Don't know what I'll call it yet, but we'll see.
That's all for today.
Peace,
T.M.
Masinja's CAT scan is scheduled for Tuesday, 5 Jun. After that, the doc has no reason to keep him in the NICU anymore. He's already back up to 30z (90cc) at each feeding and thriving. It's almost surreal to us that he's actually ready to come home.
We have his discharge class on Monday, so we get to learn the baby CPR and good things like that. I think the reality of him coming home will hit us even more after that class. It's been so hard to walk by that sign-up sheet and watch other babies go home week after week, but it's also been nice, because they don't have to stay in the NICU anymore, either.
I guess I'm going to have to start a new blog when he comes home. Don't know what I'll call it yet, but we'll see.
That's all for today.
Peace,
T.M.
Thursday, May 31, 2007
Daily Update - 31 May 2007
Day 6 Post-Op.
Masinja is pretty much on his way home next week. The doc said that after his CAT scan next week, he'll be ready. Words that we've been waiting to hear for what seems like forever. Right now he's spent 131 days in the NICU, so now we're actually on a countdown! We don't know the exact date yet, but we'll have it for you ASAP.
We'll let you know how the CAT scan goes next week.
That's all for today.
Peace,
T.M.
Masinja is pretty much on his way home next week. The doc said that after his CAT scan next week, he'll be ready. Words that we've been waiting to hear for what seems like forever. Right now he's spent 131 days in the NICU, so now we're actually on a countdown! We don't know the exact date yet, but we'll have it for you ASAP.
We'll let you know how the CAT scan goes next week.
That's all for today.
Peace,
T.M.
Daily Update - 30 May 2007
Day 5 Post-Op.
Yea, Masinja's eating! He started out at 15ccs and will work up every other feeding. He should be a lot happier, at least you'd think, but now we're just teasing him, because he got used to having almost 3oz (90ccs) every feeding. He'll get back there, just need to have some patience.
That's all for today.
Peace,
T.M.
Yea, Masinja's eating! He started out at 15ccs and will work up every other feeding. He should be a lot happier, at least you'd think, but now we're just teasing him, because he got used to having almost 3oz (90ccs) every feeding. He'll get back there, just need to have some patience.
That's all for today.
Peace,
T.M.
Tuesday, May 29, 2007
Daily Update - 29 May 2007
Day 4 Post-Op
Masinja had a bowel movement today! That means he's probably going to start eating again tomorrow. They'll start him out slow, and probably just go with pedialyte at first, so we'll see how it goes.
He's still pretty cranky, but you'd be cranky if you couldn't eat for 4 days.
That's all for today.
Peace,
T.M.
Masinja had a bowel movement today! That means he's probably going to start eating again tomorrow. They'll start him out slow, and probably just go with pedialyte at first, so we'll see how it goes.
He's still pretty cranky, but you'd be cranky if you couldn't eat for 4 days.
That's all for today.
Peace,
T.M.
Daily Update - 28 May 2007
Day 3 Post-Op
Today was a little better for Masinja. He slept pretty well into the morning, so the nurse and doc didn't bother him until he woke up. He was still pretty hungry, and sucking on his pacifier like crazy, but he was pretty well otherwise. He didn't require any sedatives, so that was a plus, too.
That's all for today.
Peace,
T.M.
Today was a little better for Masinja. He slept pretty well into the morning, so the nurse and doc didn't bother him until he woke up. He was still pretty hungry, and sucking on his pacifier like crazy, but he was pretty well otherwise. He didn't require any sedatives, so that was a plus, too.
That's all for today.
Peace,
T.M.
Monday, May 28, 2007
Daily Update - 27 May 2007
Day 2 Post-Op.
Masinja had an ok day. He's getting really hungry and showing his dissatisfaction with being unable to eat. It's a little heartbreaking to see him so upset. I held his hands and pacifier for about an hour last night trying to calm him down, so he would go to sleep. They ended up having to give him a sedative, because he was so unhappy. We're really hoping that he can start eating before the 7 days pass.
That's all for today.
Peace,
T.M.
Masinja had an ok day. He's getting really hungry and showing his dissatisfaction with being unable to eat. It's a little heartbreaking to see him so upset. I held his hands and pacifier for about an hour last night trying to calm him down, so he would go to sleep. They ended up having to give him a sedative, because he was so unhappy. We're really hoping that he can start eating before the 7 days pass.
That's all for today.
Peace,
T.M.
Sunday, May 27, 2007
Daily Update - 26 May 2007
Yea, I'm 19 weeks old today!
Masinja is doing well. It's 1 day post-Op and he's managing his pain, with the help of Tylenol and a few other good friends. He's more unhappy at the fact that he can't eat than anything else right now.
The surgeon looked at him and said everything looked good, so he's making solid progress so far. He's even having good bowel sounds, so maybe his plumbing will be ready sooner than later. We'll see.
That's all for today.
Peace,
T.M.
Masinja is doing well. It's 1 day post-Op and he's managing his pain, with the help of Tylenol and a few other good friends. He's more unhappy at the fact that he can't eat than anything else right now.
The surgeon looked at him and said everything looked good, so he's making solid progress so far. He's even having good bowel sounds, so maybe his plumbing will be ready sooner than later. We'll see.
That's all for today.
Peace,
T.M.
Daily Update - 25 May 2007
Masinja's surgery went really well today. It lasted about 2 hours and he got his belly, hernia, and circumcision all done while he was under. The doc said he performed well. He was intubated for the surgery, but came off around 8pm, and has been doing fine since.
He's pretty uncomfortable right now, but they're giving him pretty good meds, so he'll sleep pretty well. He's going to be mad when he realizes he can't eat for several days.
The doc made a comment that this should be his "last adventure" in the NICU, and that coming home is hopefully right around the corner. We'll see how that comes to fruition after his CAT scan next week.
That's all for today.
Peace,
T.M.
He's pretty uncomfortable right now, but they're giving him pretty good meds, so he'll sleep pretty well. He's going to be mad when he realizes he can't eat for several days.
The doc made a comment that this should be his "last adventure" in the NICU, and that coming home is hopefully right around the corner. We'll see how that comes to fruition after his CAT scan next week.
That's all for today.
Peace,
T.M.
Daily Update - 24 May 2007
Masinja is still doing well off his oxygen support. He's still scheduled for surgery tomorrow, so all looks well with that. He will probably be intubated for the surgery to make sure he does alright and doesn't have any problems.
He's supposed to eat his last bottle of milk at 0200 tomorrow morning, and then a little pedialyte at 0500 and then he's fasting for 5 to 7 days. He'll probably be a very unhappy camper when he's not able to eat for a few days, but he will be fine in the long run.
That's all for today.
Peace,
T.M.
He's supposed to eat his last bottle of milk at 0200 tomorrow morning, and then a little pedialyte at 0500 and then he's fasting for 5 to 7 days. He'll probably be a very unhappy camper when he's not able to eat for a few days, but he will be fine in the long run.
That's all for today.
Peace,
T.M.
Thursday, May 24, 2007
Daily Update - 23 May 2007
Great news! Masinja no longer requires oxygen support! The nasal cannula has been removed, and all we see now is his normal baby face.
His surgery is scheduled for Friday afternoon. We're ready for him to be put back together, so he can actually be more comfortable, and get that much closer to actually coming home. It will be nice to hear him down the hall, instead of down the street.
That's all for today.
Peace,
T.M.
His surgery is scheduled for Friday afternoon. We're ready for him to be put back together, so he can actually be more comfortable, and get that much closer to actually coming home. It will be nice to hear him down the hall, instead of down the street.
That's all for today.
Peace,
T.M.
Wednesday, May 23, 2007
Daily Update - 22 May 2007
Masinja had a pretty boring day. T.M.M. attempted to breastfeed him, and he latched on for a few minutes. She'll try again tomorrow and see if he takes to it more. Otherwise, he's doing fine. He weighed in at 6lb, 11oz tonight, so he's definitely putting on some weight.
The surgeon is still scheduled to come see him tomorrow, so we'll see what he says about the surgery, and let you know when it will be.
That's all for today.
Peace,
T.M.
The surgeon is still scheduled to come see him tomorrow, so we'll see what he says about the surgery, and let you know when it will be.
That's all for today.
Peace,
T.M.
Daily Update - 21 May 2007
Masinja did well today. He's eating ad lib, but his window has been stretched out to 4 hours from 3, so he eats when he wants, but every 4 hours at a minimum.
The surgeon is supposed to come look at him Wednesday to decide when he's going to do the surgery. Hopefully it will be this week.
That's all for today.
Peace,
T.M.
The surgeon is supposed to come look at him Wednesday to decide when he's going to do the surgery. Hopefully it will be this week.
That's all for today.
Peace,
T.M.
Sunday, May 20, 2007
Daily Update - 20 May 2007
Yea, I'm 4 months old today!
Today was pretty boring, which is good. Masinja seemed to be a little more gassy than usual, but we think that's because T.M.M. was sneaking some broccoli in on the side. It's nothing a little Maalox can't fix, so he'll be good.
That's all for today.
Peace,
T.M.
Today was pretty boring, which is good. Masinja seemed to be a little more gassy than usual, but we think that's because T.M.M. was sneaking some broccoli in on the side. It's nothing a little Maalox can't fix, so he'll be good.
That's all for today.
Peace,
T.M.
Daily Update - 19 May 2007
Yea, I'm 18 weeks old today!
Masinja had a good/bad day today. Well, he got a little excited during his afternoon feeding and decided that he was going to eat and breathe at the same time. Needless to say, he choked a little bit, but instead of coughing (like a normal reflex), he held his breath. I think he has a thing for turning blue and making us freak out. Anyway, he ended up being fine, and finished his bottle.
The day did get better though. Masinja decided he was hungry during his evening feeding, and decided to plow through 80cc of milk in 12 minutes.
We also got to give him a bath in his very own bathtub. He was really happy the whole time he was in the water, so we're hoping that bath time won't be a problem for him once we get him home. He seemed pretty content, so we'll see how he does on his next bath night.
That's all for today.
Peace,
T.M.
Masinja had a good/bad day today. Well, he got a little excited during his afternoon feeding and decided that he was going to eat and breathe at the same time. Needless to say, he choked a little bit, but instead of coughing (like a normal reflex), he held his breath. I think he has a thing for turning blue and making us freak out. Anyway, he ended up being fine, and finished his bottle.
The day did get better though. Masinja decided he was hungry during his evening feeding, and decided to plow through 80cc of milk in 12 minutes.
We also got to give him a bath in his very own bathtub. He was really happy the whole time he was in the water, so we're hoping that bath time won't be a problem for him once we get him home. He seemed pretty content, so we'll see how he does on his next bath night.
That's all for today.
Peace,
T.M.
Saturday, May 19, 2007
Daily Update - 18 May 2007
Masinja had a good day today. He's eating 80cc bottles pretty consistently, so that is good. He's getting more and more vocal, so he actually has some noise to go with the funny faces he makes. Other than that, it was a pretty boring day.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Thursday, May 17, 2007
Daily Update - 17 May 2007
Well, Masinja was moved to his new room today, and he seems to like it pretty well. It's different now that he has his own room. The nurses are all learning a new comm system, so it's been entertaining at times watching them try to use their "Star Trek" like devices.
Masinja ate well today. He actually took 80ccs tonight. He's getting closer to 3oz every day. He also managed to make a mess of his ostomy bag, so that was interesting cleaning him and remaking his crib. He was an unhappy camper, but we got him settled back down, fed him, and then all was well.
That's all for today.
Peace,
T.M.
Masinja ate well today. He actually took 80ccs tonight. He's getting closer to 3oz every day. He also managed to make a mess of his ostomy bag, so that was interesting cleaning him and remaking his crib. He was an unhappy camper, but we got him settled back down, fed him, and then all was well.
That's all for today.
Peace,
T.M.
Daily Update - 16 May 2007
Masinja had a good day... he ate his bottles without having to turn up his oxygen. He's definitely getting more organized. He's getting better at burping, however, still does it on his own time. He doesn't like the patting or back rubbing, so he hangs on to them until the mood suits him. Makes for a fun time when you're picking him up and he sings to you.
He's still scheduled to move upstairs tomorrow, so we won't see him most of the day. It'll be very busy in the NICU, so they're are no visitors until the evening hours.
That's all for today.
Peace,
T.M.
He's still scheduled to move upstairs tomorrow, so we won't see him most of the day. It'll be very busy in the NICU, so they're are no visitors until the evening hours.
That's all for today.
Peace,
T.M.
Daily Update - 15 May 2007
We got the results of Masinja's ultrasound. His ventricles haven't changed much since the last one. He does, however, have a little brain atrophy near the spot where the reservoir sat. This is fairly normal, as fluid will tend to pool there after the reservoir is removed.
We don't know if it caused any real damage, and probably won't know until a few years from now. He's still very alert and active, so we're hopeful that it's minimal. Only time will tell.
That's all for today.
Peace,
T.M.
We don't know if it caused any real damage, and probably won't know until a few years from now. He's still very alert and active, so we're hopeful that it's minimal. Only time will tell.
That's all for today.
Peace,
T.M.
Tuesday, May 15, 2007
Daily Update - 14 May 2007
Masinja had his cranial ultrasound today. We should find out the results tomorrow.
He did better with his bottle. T.M.M. is getting more comfortable and so is he.
He's not moving to the new unit until Thursday now. They decided they wanted to test out some more systems or something before they go.
That's all for today.
Peace,
T.M.
He did better with his bottle. T.M.M. is getting more comfortable and so is he.
He's not moving to the new unit until Thursday now. They decided they wanted to test out some more systems or something before they go.
That's all for today.
Peace,
T.M.
Monday, May 14, 2007
Daily Update - 13 May 2007
Masinja has rec'd all of his immunizations. (They were actually spread out over 3 days) He seems to have done well with all 3 of the shots.
He was a little fussy when we were feeding him today, and actually proved a little difficult to burp. The nurses even had a little trouble with him, so we'll be watching his progress. We've had to get used to holding him a certain way for him to eat, and sometimes it makes it difficult with all the extra tubes and wires he's currently sporting.
That's all for today.
Peace,
T.M.
He was a little fussy when we were feeding him today, and actually proved a little difficult to burp. The nurses even had a little trouble with him, so we'll be watching his progress. We've had to get used to holding him a certain way for him to eat, and sometimes it makes it difficult with all the extra tubes and wires he's currently sporting.
That's all for today.
Peace,
T.M.
Saturday, May 12, 2007
Daily Update - 12 May 2007
Yea, I'm 16 weeks old today!
Masinja is working over that bottle feeding. He's up to 60ccs (2oz) per feeding! He's also moved from every 3 hours to "ad lib", meaning that he can eat anytime he's hungry.
He's also proving to be very manly, as he burped and all the nurses in his and his neighboring pod heard him. They were pretty amazed at the power of the Masinja. His kung-fu is very strong.
That's all for today.
Peace,
T.M.
Masinja is working over that bottle feeding. He's up to 60ccs (2oz) per feeding! He's also moved from every 3 hours to "ad lib", meaning that he can eat anytime he's hungry.
He's also proving to be very manly, as he burped and all the nurses in his and his neighboring pod heard him. They were pretty amazed at the power of the Masinja. His kung-fu is very strong.
That's all for today.
Peace,
T.M.
Daily Update - 11 May 2007
T.M.M. got to bottle feed Masinja for the first time today! He performed similar to yesterday, and required a few breaks. We're pretty much feeding him from the bottle every chance we get now. He's actually made so much progress that every feeding is from a bottle unless he's too tired.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Daily Update - 10 May 2007
I'm officially born today! (10 May was the original due date).
Today I got to feed Masinja a bottle for the first time. He did pretty well with me at the helm. We had to take several breaks, because he was getting overly excited about eating and forgot to breathe. He's working on that whole breathe through your nose, eat with your mouth thing.
That's all for today.
Peace,
T.M.
Today I got to feed Masinja a bottle for the first time. He did pretty well with me at the helm. We had to take several breaks, because he was getting overly excited about eating and forgot to breathe. He's working on that whole breathe through your nose, eat with your mouth thing.
That's all for today.
Peace,
T.M.
Wednesday, May 9, 2007
Daily Update - 9 May 2007
Had some questions about Masinja moving. It's a brand new NICU that was just built. It's super awesome compared to what they have now, so this is definitely an upgrade.
Masinja did really well today. He took a bottle at every other feeding, and had no problems. He got his first immunization today, with 2 more shots to follow in the next few days. He tolerated the shot well, and didn't even get a fever.
T.M.M. and I actually gave him a bath tonight. Believe it or not, it was the first time we got to bathe him. His nurse usually does it when she changes his ostomy bag, so most of the time we end up missing it. Tonight we were there at the right time and got to do it ourselves, which was pretty neat. He was very active, and frequently gave us his opinion on how we were doing.
Finally, here are some recent pictures of him from 5 May. Just click the links:
link 1
link 2
link 3
link 4
That's all for today.
Peace,
T.M.
Masinja did really well today. He took a bottle at every other feeding, and had no problems. He got his first immunization today, with 2 more shots to follow in the next few days. He tolerated the shot well, and didn't even get a fever.
T.M.M. and I actually gave him a bath tonight. Believe it or not, it was the first time we got to bathe him. His nurse usually does it when she changes his ostomy bag, so most of the time we end up missing it. Tonight we were there at the right time and got to do it ourselves, which was pretty neat. He was very active, and frequently gave us his opinion on how we were doing.
Finally, here are some recent pictures of him from 5 May. Just click the links:
link 1
link 2
link 3
link 4
That's all for today.
Peace,
T.M.
Daily Update - 8 May 2007
Today we got to read up on Masinja's impending vaccinations. He's getting 3 shots that will cover all the madness. They might do 1 tonight, and then follow up with the other 2 in the next couple of days.
He's still sucking down his bottle like noboby's business, and is actually upgraded to take a bottle almost every other feeding, or "as he tolerates". He's doing really well with it, so we're happy.
Masinja's scheduled to move into the new NICU on the 15th. He'll actually have his own room, so that will definitely be nice. We won't be able to visit much during the day, because of all the moving, but we'll still be able to hang out with him that night, so all will be well.
That's all for today.
Peace,
T.M.
He's still sucking down his bottle like noboby's business, and is actually upgraded to take a bottle almost every other feeding, or "as he tolerates". He's doing really well with it, so we're happy.
Masinja's scheduled to move into the new NICU on the 15th. He'll actually have his own room, so that will definitely be nice. We won't be able to visit much during the day, because of all the moving, but we'll still be able to hang out with him that night, so all will be well.
That's all for today.
Peace,
T.M.
Tuesday, May 8, 2007
Daily Update - 7 May 2007
Masinja did well again today. He had 3 bottle feedings! The doc also said that he's almost ready to get rid of the nasal cannula and be free of extra oxygen. We'll definitely let you know when he gets rid of it.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Monday, May 7, 2007
Daily Update - 6 May 2007
Masinja had a quiet day. He ate and slept, and that was about it. He was very peaceful both times we saw him. He's gained a lot of weight lately, and is 5lbs 12oz now. He's definitely enjoying eating, and only continues to get stronger.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Sunday, May 6, 2007
Daily Update - 5 May 2007
Cinco de Mayo!
Masinja had a pretty peaceful day. He was just chilling and eating. T.M.M and I held him for a while, and he slept most of the time. He got to meet most of his aunts and uncles this weekend, so he was pretty psyched.
He's still working on 2 bottle feedings a day, and doing well with them. We're hoping it becomes a regular thing for all of his feedings soon. It will be nice when we can feed him from a bottle and just sit with him.
That's all for today.
Peace,
T.M.
Masinja had a pretty peaceful day. He was just chilling and eating. T.M.M and I held him for a while, and he slept most of the time. He got to meet most of his aunts and uncles this weekend, so he was pretty psyched.
He's still working on 2 bottle feedings a day, and doing well with them. We're hoping it becomes a regular thing for all of his feedings soon. It will be nice when we can feed him from a bottle and just sit with him.
That's all for today.
Peace,
T.M.
Friday, May 4, 2007
Daily Update - 4 May 2007
Masinja had his reservoir removed this morning. Everything went as planned, and he was doing well this afternoon when we visited with him.
Madelinja's service also went well, and there was a good turnout of support. We had a lot of food left over, but that's not a big deal.
Due to numerous requests, I'm posting the eulogy I wrote for her:
~ On the 20th of Jan, at 1245am, I met the most beautiful girl in the world. 14 years and 4 days after I met her mother, Madelynn Elizabeth climbed into my heart and built a fortress around it. The drawbridge is now pulled up, but my love for her will always scale the walls.
We didn’t realize it at first, but Madelynn had a role. A very important purpose. She was Mason’s guardian angel. The night they were born, Madelynn came out first, a little too eagerly for someone coming through a c-section. When she met the cold air for the first time, she let out the first and last cry I would ever hear from her. But it wasn’t a cry of fright, or pain; it was a comfort to Mason, telling him, “I’m here, it’s safe to come out.” And after Mason came, they lay side by side on the table. Madelynn whimpered while Mason was intubated. She was comforting him, telling him he’d be alright. My daughter was already more of a leader than I could ever dream of being. She was leading her little brother to life.
For the last 3 months, they spent their time in separate beds, but their beds were right next to each other. Madelynn was ever so vigilant about her brother. Several times he was rolled past her for a procedure, and we thought she was letting us know she wasn’t happy, but she was telling him it would be alright. And when he’d return, she’d be calm again, and let him know that she was happy to see him back.
Her attitude was famous, or infamous, around the NICU, and the whole staff knew who she was. One day, during an eye exam, she stared down the doctor, and actually made take a 15-minute break. Her eyes had a fire that couldn’t be denied, but they also had a love that couldn’t be either. Madelynn always seemed to be upset that Mason was getting more attention than her, but she was actually telling us that we better take care of him, or we’d have to answer to her. Through all of her spells, episodes, and sometimes outright temper tantrums, the doctor’s would joke that they were ordering spankings for her instead of meds. I offered them duct tape, but most of the time, all she needed was to hold my hand and hear my voice to calm her down and make everything alright. Cheri says that she was daddy’s little girl, but it’s only because Madelynn was, and always will be, her mother’s daughter.
Madelynn knew she was loved, and not just because Cheri and I told her everyday, but because she could feel it in the hands of the NICU staff, and she could hear every prayer that was said in her name. She gave all that strength to Mason, because she knew he needed it. And as he seemed to thrive, things took a toll on her body. She didn’t recover as well, she felt more pain, she was overcome by her own issues. Madelynn was a lot sicker than Cheri and I probably wanted to admit. She fought hard, but she didn’t have enough for two. Though everything humanly possible was done to save her, it wouldn’t be enough.
In her final hour, Mason was brought over, and Cheri and I took turns holding both of them. It was the first and last time we would hold Madelynn, but Mason was strong for all three of us. He spoke to Madelynn, and told her it was alright to go, that her mission was complete. He comforted her just as she had comforted him. And as we watched her take her final breath, we knew that she was going to a better place, and that she wouldn’t have to suffer anymore. She led her brother to life, only to give up her own.
Madelynn, mommy and daddy love you Sweet Princess. Your love will live in our hearts forever.~
-------------
That's all for today.
Peace,
T.M.
Madelinja's service also went well, and there was a good turnout of support. We had a lot of food left over, but that's not a big deal.
Due to numerous requests, I'm posting the eulogy I wrote for her:
~ On the 20th of Jan, at 1245am, I met the most beautiful girl in the world. 14 years and 4 days after I met her mother, Madelynn Elizabeth climbed into my heart and built a fortress around it. The drawbridge is now pulled up, but my love for her will always scale the walls.
We didn’t realize it at first, but Madelynn had a role. A very important purpose. She was Mason’s guardian angel. The night they were born, Madelynn came out first, a little too eagerly for someone coming through a c-section. When she met the cold air for the first time, she let out the first and last cry I would ever hear from her. But it wasn’t a cry of fright, or pain; it was a comfort to Mason, telling him, “I’m here, it’s safe to come out.” And after Mason came, they lay side by side on the table. Madelynn whimpered while Mason was intubated. She was comforting him, telling him he’d be alright. My daughter was already more of a leader than I could ever dream of being. She was leading her little brother to life.
For the last 3 months, they spent their time in separate beds, but their beds were right next to each other. Madelynn was ever so vigilant about her brother. Several times he was rolled past her for a procedure, and we thought she was letting us know she wasn’t happy, but she was telling him it would be alright. And when he’d return, she’d be calm again, and let him know that she was happy to see him back.
Her attitude was famous, or infamous, around the NICU, and the whole staff knew who she was. One day, during an eye exam, she stared down the doctor, and actually made take a 15-minute break. Her eyes had a fire that couldn’t be denied, but they also had a love that couldn’t be either. Madelynn always seemed to be upset that Mason was getting more attention than her, but she was actually telling us that we better take care of him, or we’d have to answer to her. Through all of her spells, episodes, and sometimes outright temper tantrums, the doctor’s would joke that they were ordering spankings for her instead of meds. I offered them duct tape, but most of the time, all she needed was to hold my hand and hear my voice to calm her down and make everything alright. Cheri says that she was daddy’s little girl, but it’s only because Madelynn was, and always will be, her mother’s daughter.
Madelynn knew she was loved, and not just because Cheri and I told her everyday, but because she could feel it in the hands of the NICU staff, and she could hear every prayer that was said in her name. She gave all that strength to Mason, because she knew he needed it. And as he seemed to thrive, things took a toll on her body. She didn’t recover as well, she felt more pain, she was overcome by her own issues. Madelynn was a lot sicker than Cheri and I probably wanted to admit. She fought hard, but she didn’t have enough for two. Though everything humanly possible was done to save her, it wouldn’t be enough.
In her final hour, Mason was brought over, and Cheri and I took turns holding both of them. It was the first and last time we would hold Madelynn, but Mason was strong for all three of us. He spoke to Madelynn, and told her it was alright to go, that her mission was complete. He comforted her just as she had comforted him. And as we watched her take her final breath, we knew that she was going to a better place, and that she wouldn’t have to suffer anymore. She led her brother to life, only to give up her own.
Madelynn, mommy and daddy love you Sweet Princess. Your love will live in our hearts forever.~
-------------
That's all for today.
Peace,
T.M.
Daily Update - 3 May 2007
Masinja's reservoir removal was canx today. There were a couple of emergency surgeries that came up for the neurosurgeon. It's supposed to be rescheduled for tomorrow afternoon.
Otherwise, he had a good day. They put an IV in his left arm in preparation for the surgery, so that will be there until they don't need it anymore. He was also very alert when we visited him, so he seems to be recognizing more things visually.
Madelinja's memorial service is tomorrow at 11am. We'll be celebrating her life and hopefully everyone that can make it will be there. Thanks again to everyone for their support!
That's all for today.
Peace,
T.M.
Otherwise, he had a good day. They put an IV in his left arm in preparation for the surgery, so that will be there until they don't need it anymore. He was also very alert when we visited him, so he seems to be recognizing more things visually.
Madelinja's memorial service is tomorrow at 11am. We'll be celebrating her life and hopefully everyone that can make it will be there. Thanks again to everyone for their support!
That's all for today.
Peace,
T.M.
Thursday, May 3, 2007
Daily Update - 2 May 2007
Masinja had a good day today. No screaming at me. He's scheduled to get his reservoir out tomorrow, sometime after lunch. It's a pretty simple procedure, so it shouldn't take long. We'll let everyone know how he did.
He did get moved again to a warmer part of his pod. He was under a vent, and that's why he was cool most of the time. He was actually too warm yesterday afternoon, because we were keeping all those blankets on him.
That's all for today.
Peace,
T.M.
He did get moved again to a warmer part of his pod. He was under a vent, and that's why he was cool most of the time. He was actually too warm yesterday afternoon, because we were keeping all those blankets on him.
That's all for today.
Peace,
T.M.
Wednesday, May 2, 2007
Daily Update - 1 May 2007
Masinja was still having some trouble with his body temp, so we brought him a few hats. None of them fit, and the one we put on actually swallowed his little head. We wrapped him up good in his blankets, so he should be fine.
I actually got yelled at last night. I was trying to eat his hand, instead of him eating mine, and he screeched at me. It was pretty funny.
That's all for today.
Peace,
T.M.
I actually got yelled at last night. I was trying to eat his hand, instead of him eating mine, and he screeched at me. It was pretty funny.
That's all for today.
Peace,
T.M.
Daily Update - 30 April 2007
Today is 100 days in the NICU for Masinja.
He "graduated" to the "healthier" baby section. He's still in his crib and seems pretty happy. He took 2 bottles today, and can already burp with the best of them. He did have trouble keeping his body temp up, so we had to wrap him in extra blankets.
On a different note, his ostomy surgery was postponed indefinitely. The doc wants the neurosurgeon and the pediactric surgeon to do all of the work at the same time. Well, the neurosurgeon won't commit as to whether or not Masinja needs a shunt, so we're in limbo for the moment. It's ok, because he's still eating and getting stronger, but we were hoping that he'd be on track to come home in June... looks like that's no longer a reality.
That's all for today.
Peace,
T.M.
He "graduated" to the "healthier" baby section. He's still in his crib and seems pretty happy. He took 2 bottles today, and can already burp with the best of them. He did have trouble keeping his body temp up, so we had to wrap him in extra blankets.
On a different note, his ostomy surgery was postponed indefinitely. The doc wants the neurosurgeon and the pediactric surgeon to do all of the work at the same time. Well, the neurosurgeon won't commit as to whether or not Masinja needs a shunt, so we're in limbo for the moment. It's ok, because he's still eating and getting stronger, but we were hoping that he'd be on track to come home in June... looks like that's no longer a reality.
That's all for today.
Peace,
T.M.
Daily Update - 29 April 2007
Today was a good day for Masinja. His nurse moved him to back to his usual spot today, but it looks like he probably won't stay there for long. There's a lot of other babies coming in right now, which is sad, but he's making progress so that's a positive.
He took 1 bottle today, and the nurse upgraded the nipple so he would do more of the work. He did well, and took his entire feeding in 15 mins.
That's all for today.
Peace,
T.M.
He took 1 bottle today, and the nurse upgraded the nipple so he would do more of the work. He did well, and took his entire feeding in 15 mins.
That's all for today.
Peace,
T.M.
Sunday, April 29, 2007
Daily Update - 28 April 2007
Masinja had a good day today. He took another feeding from a bottle, and did well with it. He's doing well in his crib and seems to enjoy being out of the isolette. They moved him to a different spot, though, so it was weird when he wasn't in his usual place. We'll see if that lasts long, as his day nurse will probably move him back.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Saturday, April 28, 2007
Daily Update - 27 April 2007
Masinja was in a crib this morning when we went to visit him! It's a lot easier to interact with him now. He had a really good day, and was just chillin out. We both held him again, and rocked him to sleep. He definitely likes to rock, and seems really content in our arms.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Friday, April 27, 2007
Daily Update - 26 April 2007
Masinja had another good day. He took his entire feeding (1.5oz) from a bottle, and was looking for more. He's doing a really good job, and will hopefully be able to start taking 2 bottles a day. He's scheduled to move into a crib tomorrow, so that's good, too. It will be a lot easier to interact with him. We both held him again yesterday. We want to give him as much love as possible, and it really helps to hold him. I got to rock him to sleep after his feeding last night, and he was just about snoring when we put him to bed.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Thursday, April 26, 2007
Daily Update - 25 April 2007
Masinja had a great day today. He took 40cc, almost his entire feeding, from a bottle! He's really starting to get the hang of it. T.M.M. and I held him yesterday, and rocked him to sleep both times. He seemed really peaceful.
I forgot to tell everyone that he had a dye test on his lower GI tract, and that everything looked good. They're scheduling a time to put his ostomy back together, and we'll let you know when that is.
They gave him a nasal cannula again, because they're trying to put him in a crib. Well, he was back to his old self, and pulling it out of his nose, so the nurses are busy trying to keep it in his nose, and preferably a prong in each nostril versus both prongs in one nostril.
That's all for today.
Peace,
T.M.
I forgot to tell everyone that he had a dye test on his lower GI tract, and that everything looked good. They're scheduling a time to put his ostomy back together, and we'll let you know when that is.
They gave him a nasal cannula again, because they're trying to put him in a crib. Well, he was back to his old self, and pulling it out of his nose, so the nurses are busy trying to keep it in his nose, and preferably a prong in each nostril versus both prongs in one nostril.
That's all for today.
Peace,
T.M.
Tuesday, April 24, 2007
Daily Update - 24 April 2007
We've decided that we're going to continue the blog. This blog is about our babies, not us, and we don't want everyone to miss out on Masinja's progress, as he's the most important thing on our minds.
Masinja had a good day. He took 26ccs from a bottle today. That's almost an ounce of milk in 15 mins. He's getting 1.5oz every 3 hours, so he's on his way to being steadily fed from a bottle. His ostomy surgery has been pushed back until the week after next. We'll let you know when we get a solid date. T.M.M. and I both held him today, and he was resting comfortably when we left him tonight.
We asked the doc about his seizures, and he was pretty sure they were linked to his hydrocephalus. His brain is still regulating itself, so they're just going to try to counteract the seizures with medication and adjust as necessary.
All of Madelinja's arrangements have been made. We'll be having a memorial service for her on 4 May. We'll celebrate her short, but ever so huge life, and all the love and joy she gave us. We want to thank everyone again for their support, because this has been the roughest time, but we know that we'll get through it somehow.
Finally, we've started a page for Madelinja on the March of Dimes website. You can find it here:
http://www.marchofdimes.com/prematurity/b.asp?band_id=36060
If you'd like to make a donation in her name, just follow the links on the page. She'll be very proud of you.
That's all for today.
Peace,
T.M.
Masinja had a good day. He took 26ccs from a bottle today. That's almost an ounce of milk in 15 mins. He's getting 1.5oz every 3 hours, so he's on his way to being steadily fed from a bottle. His ostomy surgery has been pushed back until the week after next. We'll let you know when we get a solid date. T.M.M. and I both held him today, and he was resting comfortably when we left him tonight.
We asked the doc about his seizures, and he was pretty sure they were linked to his hydrocephalus. His brain is still regulating itself, so they're just going to try to counteract the seizures with medication and adjust as necessary.
All of Madelinja's arrangements have been made. We'll be having a memorial service for her on 4 May. We'll celebrate her short, but ever so huge life, and all the love and joy she gave us. We want to thank everyone again for their support, because this has been the roughest time, but we know that we'll get through it somehow.
Finally, we've started a page for Madelinja on the March of Dimes website. You can find it here:
http://www.marchofdimes.com/prematurity/b.asp?band_id=36060
If you'd like to make a donation in her name, just follow the links on the page. She'll be very proud of you.
That's all for today.
Peace,
T.M.
Monday, April 23, 2007
Daily Update - 23 April 2007
I don't even know where to begin. Madelinja passed away this evening, and I've never felt so lost. Her little body just couldn't recover from all of the surgeries and infections, and it just ran out of steam. The docs have done everything possible to get her well, but in the end, she just couldn't hold on any longer. We got to hold our baby girl for the first, and last, time today.
I'm not sure if I'm going to continue with the blog. It might just become weekly updates. I don't know. I do know that we're still focused on Masinja, and that he will someday be extremely proud of the fight his big sister put up.
I know people will ask what they can do for us. Just pray for Madelinja's spirit, and know that she's in Grandma Murphy's arms, hanging out with God, Jesus, and all the little Ninjangels, and definitely causing a ruckus. She will always be her mother's daughter.
That's all for today.
Peace,
T.M.
I'm not sure if I'm going to continue with the blog. It might just become weekly updates. I don't know. I do know that we're still focused on Masinja, and that he will someday be extremely proud of the fight his big sister put up.
I know people will ask what they can do for us. Just pray for Madelinja's spirit, and know that she's in Grandma Murphy's arms, hanging out with God, Jesus, and all the little Ninjangels, and definitely causing a ruckus. She will always be her mother's daughter.
We love and miss you Sweet Princess!
Madelynn Elizabeth Neubauer ~ 20 Jan 07 - 23 Apr 07
That's all for today.
Peace,
T.M.
Sunday, April 22, 2007
Daily Update - 22 April 2007
Today started out well... Madelinja had an ok night and was making progress. Her oscillator settings were actually lower this morning, and her saturation was up. Then she relapsed this evening. Every time they suction her, they get a lot of white, mucous junk out of her lungs. They've also had to sedate her, so she can't move and fight the oscillator. She's not having a good time right now, so we're praying that she keeps fighting, and gets better soon.
Masinja was also doing well this morning. I changed his diaper and took his temp. His ostomy bag leaked, so he had nice green sludge on his stomach. I cleaned him up, and the nurse gave him a new bag. He was pretty happy, and sucked on his pacifier a lot. Well, tonight he decided that his sister wasn't about to outdo him, and he had a seizure. It wasn't as bad as the other day, but we don't know what's causing them, so they don't know what to do to treat them. He's still doing well with his feedings and maintaining his temp, so he's moving in the right direction to move into a crib, but the seizures might keep him from getting there for now. We hope they can figure out what's wrong, and can do something about it. I guess we'll see.
That's all for today.
Peace,
T.M.
Masinja was also doing well this morning. I changed his diaper and took his temp. His ostomy bag leaked, so he had nice green sludge on his stomach. I cleaned him up, and the nurse gave him a new bag. He was pretty happy, and sucked on his pacifier a lot. Well, tonight he decided that his sister wasn't about to outdo him, and he had a seizure. It wasn't as bad as the other day, but we don't know what's causing them, so they don't know what to do to treat them. He's still doing well with his feedings and maintaining his temp, so he's moving in the right direction to move into a crib, but the seizures might keep him from getting there for now. We hope they can figure out what's wrong, and can do something about it. I guess we'll see.
That's all for today.
Peace,
T.M.
Daily Update - 21 April 2007
Yea, we're 13 weeks old today!
And what a 13-week celebration it was... Madelinja had another surgery today. She wasn't doing that great this morning. They put her back on the oscillator, because she wasn't doing well on her oxygen saturation. She also wasn't ready to eat again, so the doc decided they needed to put in an Broviac catheter in order to feed her through an IV again. All her little veins are used up from having so many IVs, that they couldn't find another good one to use. She came through the surgery ok, and was doing alright when we left her. It's pretty rough right now, but she's a fighter.
Masinja had a good day. He was a little fussy, but nothing major. He's starting to figure out how to cry and make more noises than just a grunt. The nurse said that he also knows when it's time to eat, because he made noise until she came over and fed him. He seems to be getting more alert every time we interact with him.
That's all for today.
Peace,
T.M.
And what a 13-week celebration it was... Madelinja had another surgery today. She wasn't doing that great this morning. They put her back on the oscillator, because she wasn't doing well on her oxygen saturation. She also wasn't ready to eat again, so the doc decided they needed to put in an Broviac catheter in order to feed her through an IV again. All her little veins are used up from having so many IVs, that they couldn't find another good one to use. She came through the surgery ok, and was doing alright when we left her. It's pretty rough right now, but she's a fighter.
Masinja had a good day. He was a little fussy, but nothing major. He's starting to figure out how to cry and make more noises than just a grunt. The nurse said that he also knows when it's time to eat, because he made noise until she came over and fed him. He seems to be getting more alert every time we interact with him.
That's all for today.
Peace,
T.M.
Saturday, April 21, 2007
Daily Update - 20 April 2007
Yea, we're 3 months old today!!!
Madelinja did well during her surgery. It's post-surgery that's not going well. She threw a major fit last night, and the doc had to sedate her. She wasn't very happy, but I can't imagine she felt very good after all the work they did on her. We're hoping that she'll be better in the morning.
Masinja had a boring day. He slept most of the time we were there. He chewed on his hand most of the day, also, so he was pretty happy with that. He's up to 1.5oz (45ml) of breast milk for every feeding, and is tolerating them well.
That's all for today.
Peace,
T.M.
Madelinja did well during her surgery. It's post-surgery that's not going well. She threw a major fit last night, and the doc had to sedate her. She wasn't very happy, but I can't imagine she felt very good after all the work they did on her. We're hoping that she'll be better in the morning.
Masinja had a boring day. He slept most of the time we were there. He chewed on his hand most of the day, also, so he was pretty happy with that. He's up to 1.5oz (45ml) of breast milk for every feeding, and is tolerating them well.
That's all for today.
Peace,
T.M.
Thursday, April 19, 2007
Daily Update - 19 April 2007
Well, Madelinja's surgery was postponed until 20 April. The surgeons couldn't make the time, so they had to push it back. We were hoping it would be over with today, but that's just not the case. It's supposed to take place first thing in the morning, so we'll see when it actually happens, and we'll let you know the results.
So today was even more exciting than yesterday. While Madelinja was waiting for the surgery that never happened, they had to stop feeding her. Well, she got pretty mad. At one point she was having a good fit and I had to pry her white-knuckled fingers off her breathing tube. She has quite a grip for a 4lb girl. I held her hand for a while and calmed her down, but she was still pretty upset. They started feeding her again after the surgery was postponed, and they actually changed out her breathing tube. She seemed pretty peaceful this evening, with only minor bouts of attitude. We'll see how happy she is in the morning.
Masinja had a pretty boring day. He pretty much just ate and slept. I held him for about 45 mins today, so that was pretty nice. He slept most of the time, but was awake tonight for a little while. He's eating really well right now; almost 1.5oz of breast milk every 3 hours. We're starting to use T.M.M.'s supply, so we'll see how long the deep freezer stays packed.
That's all for today.
Peace,
T.M.
So today was even more exciting than yesterday. While Madelinja was waiting for the surgery that never happened, they had to stop feeding her. Well, she got pretty mad. At one point she was having a good fit and I had to pry her white-knuckled fingers off her breathing tube. She has quite a grip for a 4lb girl. I held her hand for a while and calmed her down, but she was still pretty upset. They started feeding her again after the surgery was postponed, and they actually changed out her breathing tube. She seemed pretty peaceful this evening, with only minor bouts of attitude. We'll see how happy she is in the morning.
Masinja had a pretty boring day. He pretty much just ate and slept. I held him for about 45 mins today, so that was pretty nice. He slept most of the time, but was awake tonight for a little while. He's eating really well right now; almost 1.5oz of breast milk every 3 hours. We're starting to use T.M.M.'s supply, so we'll see how long the deep freezer stays packed.
That's all for today.
Peace,
T.M.
Daily Update - 18 April 2007
Well, today was not fun. Masinja had a seizure and scared the daylights out of his nurses. They don't know what caused it, but they're watching him closely. They changed his feeding pattern from 3 hours continuously, to just every 3 hours. They're also trying to give him a bottle 1 to 2 times a day, but they're taking it slow because of the seizure.
T.M.M. and I both got to hold Masinja again today, so that was good. It's funny to watch him make faces at us. He actually scared himself, because he went to cry and hadn't heard himself make a noise like that, so he look startled, but he calmed down pretty quickly.
Madelinja is still scheduled for surgery tomorrow. Her shunt will be the Ventriculoatrial (VA) placement, meaning the tube will run from her brain to the right atrium of her heart. They normally run the tube to the belly, but because of all the issues she's had, they don't want to mess with her intestines. We're not sure if the shunt will be toward the top of her head or toward the back, so we'll be asking about that later.
That's all for today.
Peace,
T.M.
T.M.M. and I both got to hold Masinja again today, so that was good. It's funny to watch him make faces at us. He actually scared himself, because he went to cry and hadn't heard himself make a noise like that, so he look startled, but he calmed down pretty quickly.
Madelinja is still scheduled for surgery tomorrow. Her shunt will be the Ventriculoatrial (VA) placement, meaning the tube will run from her brain to the right atrium of her heart. They normally run the tube to the belly, but because of all the issues she's had, they don't want to mess with her intestines. We're not sure if the shunt will be toward the top of her head or toward the back, so we'll be asking about that later.
That's all for today.
Peace,
T.M.
Wednesday, April 18, 2007
Daily Update - 17 April 2007
Today was pretty boring. Both the Twinjas had a peaceful day and there were no incidents of attitude.
Madelinja is still scheduled for surgery on Thursday, so we're anxiously awaiting the results and will update everyone then.
That's all for today.
Peace,
T.M.
Madelinja is still scheduled for surgery on Thursday, so we're anxiously awaiting the results and will update everyone then.
That's all for today.
Peace,
T.M.
Monday, April 16, 2007
Daily Update - 16 April 2007
Masinja had a busy day. He drank 12mls of formula from a bottle today! He did fairly well with his bottle, and we're actually going to start using some of T.M.M.'s milk for them now. They're going to mix it with the formula, and then work their way to using just the milk.
They both had cranial ultrasounds today. The neurosurgeon is not going to remove Masinja's reservoir. He said it looked fine, and that it didn't need to come out. He still hasn't decided if Masinja will need a shunt or not, so we'll see what happens. Madelinja, on the other hand, is definitely getting a shunt put in this Thursday. She still has a lot of residual blood clot in her ventricles, so the shunt should help remove that and get her regulated. We'll let you know how the surgery goes.
They both had eye exams again today. Masinja's good for another 3 months, and Madelinja gets another exam next week. She seemed to be ok, but they're going to follow up again to make sure she continues to make progress.
That's all for today.
Peace,
T.M.
They both had cranial ultrasounds today. The neurosurgeon is not going to remove Masinja's reservoir. He said it looked fine, and that it didn't need to come out. He still hasn't decided if Masinja will need a shunt or not, so we'll see what happens. Madelinja, on the other hand, is definitely getting a shunt put in this Thursday. She still has a lot of residual blood clot in her ventricles, so the shunt should help remove that and get her regulated. We'll let you know how the surgery goes.
They both had eye exams again today. Masinja's good for another 3 months, and Madelinja gets another exam next week. She seemed to be ok, but they're going to follow up again to make sure she continues to make progress.
That's all for today.
Peace,
T.M.
Daily Update - 15 April 2007
T.M.M. and I both got to hold Masinja for about 15 mins each today. It was nice not having to contend with a ventilator tube. He seemed really happy and actually slept most of the time he was with T.M.M.
Madelinja had a boring day. She was peaceful and happy, except for a little while during the evening. Her vent settings are being tweaked and we're hoping that maybe next week she'll be off the vent.
That's all for today.
Peace,
T.M.
Madelinja had a boring day. She was peaceful and happy, except for a little while during the evening. Her vent settings are being tweaked and we're hoping that maybe next week she'll be off the vent.
That's all for today.
Peace,
T.M.
Saturday, April 14, 2007
Daily Update - 14 April 2007
Yea, we're 12 weeks old today!
Masinja had a good day. He's doing well breathing on his own. He's getting a little oxygen support from his isolette, but no pressure. He seems to be enjoying himself and makes all sorts of faces at us. Now we just need to get him on a bottle and get that tube out of his nose.
Madelinja has taken a step back on the vent. They were weaning her at a pretty good rate, but she's hit a wall. She's still eating pretty well, but she'll have to get a little stronger before she's able to be on the vapotherm.
T.M.M. got to give Madelinja a sponge bath tonight, so that was good. Masinja already had his bath, because his ostomy bag leaked all over him and his bed.
That's all for today.
Peace,
T.M.
Masinja had a good day. He's doing well breathing on his own. He's getting a little oxygen support from his isolette, but no pressure. He seems to be enjoying himself and makes all sorts of faces at us. Now we just need to get him on a bottle and get that tube out of his nose.
Madelinja has taken a step back on the vent. They were weaning her at a pretty good rate, but she's hit a wall. She's still eating pretty well, but she'll have to get a little stronger before she's able to be on the vapotherm.
T.M.M. got to give Madelinja a sponge bath tonight, so that was good. Masinja already had his bath, because his ostomy bag leaked all over him and his bed.
That's all for today.
Peace,
T.M.
Friday, April 13, 2007
Daily Update - 13 April 2007
Good News! Masinja is off the vapotherm! He actually had his first bottle today, although he didn't drink much of it. He now has a feeding tube through his nose, so he's going to eat that way for a little while longer.
Madelinja had a good day, too. Her vent settings are pretty low, and the doc is wanting to put her on the vapotherm now, too. The only thing holding her back is that we're waiting on the neurosurgeon's evaluation, and what he'll do as far as a shunt. We don't want to play yo-yo with the vent and vapotherm, so we'll see what happens.
That's all for today.
Peace,
T.M.
Madelinja had a good day, too. Her vent settings are pretty low, and the doc is wanting to put her on the vapotherm now, too. The only thing holding her back is that we're waiting on the neurosurgeon's evaluation, and what he'll do as far as a shunt. We don't want to play yo-yo with the vent and vapotherm, so we'll see what happens.
That's all for today.
Peace,
T.M.
Daily Update - 12 April 2007
Masinja is down to 21% oxygen on his vapotherm, which is basically room air. They're slowly lowering the pressure settings now, so we'll see if he can come off the vapotherm soon. The doc is also looking to remove his reservoir, because they pulled what they thought was a stitch from his incision site, and it started oozing a bit. It seems his reservoir has taken the same road as Madelinja's. We should find out Monday what's going to happen with it, otherwise he's just a happy baby.
Madelinja is doing well on her vent settings. She seems to be working more. The only time it seems that she's riding the vent is when she's in a deep sleep. They are suctioning her more often now, and it seems to have helped with her attitude. She's a lot more peaceful and seems to deal with the vent tube a little better.
The doc changed the way they're feeding the Twinjas. She's put them on a 4-hour cycle. They eat continuously for 3 hours, take a 1-hour break, and then start again. This helps them with their digestion and seems to be keeping their residual to a minimum. Madelinja is getting 20ml an hour, and Masinja is getting 21ml an hour.
That's all for now.
Peace,
T.M.
Madelinja is doing well on her vent settings. She seems to be working more. The only time it seems that she's riding the vent is when she's in a deep sleep. They are suctioning her more often now, and it seems to have helped with her attitude. She's a lot more peaceful and seems to deal with the vent tube a little better.
The doc changed the way they're feeding the Twinjas. She's put them on a 4-hour cycle. They eat continuously for 3 hours, take a 1-hour break, and then start again. This helps them with their digestion and seems to be keeping their residual to a minimum. Madelinja is getting 20ml an hour, and Masinja is getting 21ml an hour.
That's all for now.
Peace,
T.M.
Thursday, April 12, 2007
Daily Update - 11 April 2007
Masinja had a pretty boring day today. No changes for his vapotherm settings. He is over 5lbs now. He was looking really peaceful during both of our visits, so we let him get his sleep. The doc let us know today that he has an abdominal wall defect. It's nothing major, so they're going to fix it when they put his ostomy back together. He's pretty happy right now, so they won't mess with him too soon. Maybe a few weeks from now.
Madelinja got a new lock for her vent tube today. She's outgrowing the tube, and air was moving around the outside of it, so it sounded as if she was weezing. They changed it today, but it still sounded the same. Her vent settings are lower than yesterday, but she's being lazy and riding the vent. She also might have a change in her feedings, as she's getting more residual in her belly, and if she doesn't digest the formula, it will start to run straight through her.
The doc is going to talk to the neurosurgeon on Monday (he's out of town) about Madelinja and her options as far as another reservoir or a shunt. We'll let you know what becomes of that.
That's all for today.
Peace,
T.M.
Madelinja got a new lock for her vent tube today. She's outgrowing the tube, and air was moving around the outside of it, so it sounded as if she was weezing. They changed it today, but it still sounded the same. Her vent settings are lower than yesterday, but she's being lazy and riding the vent. She also might have a change in her feedings, as she's getting more residual in her belly, and if she doesn't digest the formula, it will start to run straight through her.
The doc is going to talk to the neurosurgeon on Monday (he's out of town) about Madelinja and her options as far as another reservoir or a shunt. We'll let you know what becomes of that.
That's all for today.
Peace,
T.M.
Daily Update - 10 April 2007
Not much of an update. Both the Twinjas are doing well, and there were no major changes. They're still doing well with their feedings and vent/vapotherm settings. They're slowly trying to ween Madelinja off her vent, so the settings will gradually drop as she tolerates it.
That's all for today.
Peace,
T.M.
That's all for today.
Peace,
T.M.
Tuesday, April 10, 2007
Daily Update - 9 April 2007
Masinja had another boring day. He was awake for a while, and was looking around, and went back to sleep. He was completely knocked out when we saw him last night.
Madelinja had an exciting day. She was wide awake during our last visit of the day, and had a good grip on my hand for about 30 minutes. She was very aware of her surroundings and looking all over. She even noticed when people were walking on the other side of her. It was nice to see her so wide awake and almost playful.
They both had eye exams today. Masinja looked really good and won't need any followup. Madelinja will need another exam in 2 weeks. Her eye drops were stopped today, too.
They also had cranial ultrasounds today. Masinja's ventricles were still enlarged, but were the right shape, so the doc is thinking he's doing well, and might not need a shunt. Madelinja on the other hand, wasn't looking as good as her brother. The left side of her brain did not look right, and the doc is worried about significant neurological problems later on. We don't know exactly what that means, but we'll have to be prepared for just about anything. We're hoping that it doesn't greatly impact her quality of life, but I guess we'll see what happens.
Lastly, we talked to the doc about Madelinja's vent settings and it seems she has chronic lung disease. We're not sure if that means she'll need to be on oxygen long term, or what, but that's probably why she's having a tough time getting off the vent.
That's all for today.
Peace,
T.M.
Madelinja had an exciting day. She was wide awake during our last visit of the day, and had a good grip on my hand for about 30 minutes. She was very aware of her surroundings and looking all over. She even noticed when people were walking on the other side of her. It was nice to see her so wide awake and almost playful.
They both had eye exams today. Masinja looked really good and won't need any followup. Madelinja will need another exam in 2 weeks. Her eye drops were stopped today, too.
They also had cranial ultrasounds today. Masinja's ventricles were still enlarged, but were the right shape, so the doc is thinking he's doing well, and might not need a shunt. Madelinja on the other hand, wasn't looking as good as her brother. The left side of her brain did not look right, and the doc is worried about significant neurological problems later on. We don't know exactly what that means, but we'll have to be prepared for just about anything. We're hoping that it doesn't greatly impact her quality of life, but I guess we'll see what happens.
Lastly, we talked to the doc about Madelinja's vent settings and it seems she has chronic lung disease. We're not sure if that means she'll need to be on oxygen long term, or what, but that's probably why she's having a tough time getting off the vent.
That's all for today.
Peace,
T.M.
Daily Update - 8 April 2007
Masinja had a boring day. He was bumped to 14ml of formula per hour, and that's about all the excitement he felt like generating.
Madelinja was a little more exciting. Her "permanent" IV line was removed. She now has a regular IV line in her foot. She was also bumped up to 12ml of formula per hour. She's still riding the vent a lot, so they're trying to adjust it where she will do more of the work. Hopefully as she gets stronger from feedings that she'll be able to lose that thing.
That's all for today.
Peace,
T.M.
Madelinja was a little more exciting. Her "permanent" IV line was removed. She now has a regular IV line in her foot. She was also bumped up to 12ml of formula per hour. She's still riding the vent a lot, so they're trying to adjust it where she will do more of the work. Hopefully as she gets stronger from feedings that she'll be able to lose that thing.
That's all for today.
Peace,
T.M.
Sunday, April 8, 2007
Daily Update - 7 April 2007
Yea, we're 11 weeks old today!
Masinja had another boring day. He was so bored, he managed to shove both of the prongs from the nasal cannula into one nostril. We also think he's messing with his ostomy bag, because the nurses are having to change it a lot. Maybe he's pushing the doc to put him back together again?
Madelinja had a good day. She's up to 11ml of formula per hour, and is no longer on TPN/Lipids. She's still having minimal attitude, which is also nice. They're working on lowering her vent settings, so maybe she'll be able to go on a vapotherm like her brother soon.
That's all for now.
Peace,
T.M.
Masinja had another boring day. He was so bored, he managed to shove both of the prongs from the nasal cannula into one nostril. We also think he's messing with his ostomy bag, because the nurses are having to change it a lot. Maybe he's pushing the doc to put him back together again?
Madelinja had a good day. She's up to 11ml of formula per hour, and is no longer on TPN/Lipids. She's still having minimal attitude, which is also nice. They're working on lowering her vent settings, so maybe she'll be able to go on a vapotherm like her brother soon.
That's all for now.
Peace,
T.M.
Daily Update - 6 April 2007
Masinja had a pretty boring day. They're still working on lowering his vapotherm settings. He was down to 21% oxygen, which is the equivalent to room air, so now the pressure just needs to be lowered.
Madelinja is eating 8ml of formula per hour now. She's doing pretty well, and having minimal attitude. Her vent settings are still being lowered as she'll tolerate them. Overall, she had a pretty boring day, too.
Boring is good!
That's all for now.
Peace,
T.M.
Madelinja is eating 8ml of formula per hour now. She's doing pretty well, and having minimal attitude. Her vent settings are still being lowered as she'll tolerate them. Overall, she had a pretty boring day, too.
Boring is good!
That's all for now.
Peace,
T.M.
Friday, April 6, 2007
Daily Update - 5 April 2007
Madelinja had a dye test on her bowels. Everything looked good, and they started feeding her at 3ml of formula an hour. We measured her again last night and she's 16.5" long now! She's catching up to her brother.
We didn't measure Masinja, because he was resting peacefully and we didn't want to agitate him. He was doing well on the vapotherm, and the doc is trying to wean him off of it. He's doing a better job at maintaining his body temperature, too, so they might actually move him to a crib soon.
That's all for today.
Peace,
T.M.
We didn't measure Masinja, because he was resting peacefully and we didn't want to agitate him. He was doing well on the vapotherm, and the doc is trying to wean him off of it. He's doing a better job at maintaining his body temperature, too, so they might actually move him to a crib soon.
That's all for today.
Peace,
T.M.
Wednesday, April 4, 2007
Daily Update - 4 April 2007
Madelinja finally went to the bathroom today, and now she won't stop going. I guess it's a good thing. She was on 9ml every 3 hours, then was switched to 4ml continuously, because she wasn't digesting the 9ml. Her vent settings are still higher than we'd like them to be, but she's not cooperating all that much. She's still be sedated as necessary in order to keep her from having too many fits.
Masinja is being weaned off the vapotherm. He's still at 13ml of formula, and had a good day. He got a little upset when he got a bath, but that's about it.
That's all for today.
Peace,
T.M.
Masinja is being weaned off the vapotherm. He's still at 13ml of formula, and had a good day. He got a little upset when he got a bath, but that's about it.
That's all for today.
Peace,
T.M.
Daily Update - 3 April 2007
Masinja had a pretty boring day. He was just chilling out and sucking on his pacifier. His feedings were increased to 13ml an hour, and his vapotherm settings were lowered. He actually didn't pee on anyone or anything, either. A good day for the little guy.
Madelinja had a better day than Monday, but that's because they're sedating her as needed. She's been having some "don't touch me" moments, and gets really agitated. Her vent settings are pretty steady at this point, but we're hoping they can start to lower them a little. She's still getting 5ml every 3 hours, and they're looking to increase the amount tomorrow.
That's all for today.
Peace,
T.M.
Madelinja had a better day than Monday, but that's because they're sedating her as needed. She's been having some "don't touch me" moments, and gets really agitated. Her vent settings are pretty steady at this point, but we're hoping they can start to lower them a little. She's still getting 5ml every 3 hours, and they're looking to increase the amount tomorrow.
That's all for today.
Peace,
T.M.
Tuesday, April 3, 2007
Daily Update - 2 April 2007
Masinja had another good day. He spent some time sucking on his pacifier, but only if T.M.M was holding it for him. She got to hold him for a minute as he peed on his bed, again. I’m starting to think he’s going to have some bathroom issues.
Madelinja had an alright day. She got pretty agitated this morning when they were handling her. They had to turn her vent settings all the way up, and then wean her back down. She has moments when she just doesn’t want to be touched, and that was one of them. She was resting pretty peacefully when we left last night, so that made us feel a little better. She’s up to 5ml of formula every 3 hours and tolerating it well, so that’s another positive.
They both had eye exams today. Masinja looked really good for his 2-week checkup. Madelinja also looked good, but still has another week before we see the “final” results. If she still looks good, then she won’t require another laser surgery.
That’s all for today.
Peace,
T.M.
Madelinja had an alright day. She got pretty agitated this morning when they were handling her. They had to turn her vent settings all the way up, and then wean her back down. She has moments when she just doesn’t want to be touched, and that was one of them. She was resting pretty peacefully when we left last night, so that made us feel a little better. She’s up to 5ml of formula every 3 hours and tolerating it well, so that’s another positive.
They both had eye exams today. Masinja looked really good for his 2-week checkup. Madelinja also looked good, but still has another week before we see the “final” results. If she still looks good, then she won’t require another laser surgery.
That’s all for today.
Peace,
T.M.
Daily Update - 1 April 2007
Masinja had a good day today. He's doing well on his vapotherm settings, and resting pretty peacefully. He's still on 12ml of formula and tolerating it well. He's also still peeing on everything though, so he needs to get some control on that.
Madelinja is still having fits. Her vent settings had to be turned up a little to help her out. The doc started to feed her today. She's getting 3ml every 3 hours and seems to be tolerating it well.
That's all for today.
Peace,
T.M.
Madelinja is still having fits. Her vent settings had to be turned up a little to help her out. The doc started to feed her today. She's getting 3ml every 3 hours and seems to be tolerating it well.
That's all for today.
Peace,
T.M.
Sunday, April 1, 2007
Daily Update - 31 March 2007
Yea, we're 10 weeks old today!
Today was even better than yesterday. Masinja had another "forgot to breathe" episode, and actually freaked his nurse out a little. They had to bag him for a minute until he came back up. They upped the pressure on his vapotherm, and he seems to be doing better. He's up to 12ml of formula an hour, although they had to stop feeding him for an hour after his episode.
Madelinja got started on saline solution feedings. She gets 3ml every 3 hours to see if they can get some movement in her bowels. T.M.M. got to feed her the saline solution, and give her a bath. Madelinja was doing fine until they went to wash her hair, and then she had a fit, so we decided we could wash her hair later.
That's all for today.
Peace,
T.M.
Today was even better than yesterday. Masinja had another "forgot to breathe" episode, and actually freaked his nurse out a little. They had to bag him for a minute until he came back up. They upped the pressure on his vapotherm, and he seems to be doing better. He's up to 12ml of formula an hour, although they had to stop feeding him for an hour after his episode.
Madelinja got started on saline solution feedings. She gets 3ml every 3 hours to see if they can get some movement in her bowels. T.M.M. got to feed her the saline solution, and give her a bath. Madelinja was doing fine until they went to wash her hair, and then she had a fit, so we decided we could wash her hair later.
That's all for today.
Peace,
T.M.
Daily Update - 30 March 2007
Today was a little different. Masinja was doing well on his vapotherm, but had a episode where he stopped breathing for a minute. We think it's because he was sleeping really heavily and forgot to breathe. He still has a lot to learn about walking and chewing gum at the same time, so he'll get there. He's up 11ml of formula every hour, and tolerating it well, so that's still good.
Madelinja was her usual self. She only had a few temper tantrums, mainly while we were there. I think she was saving them for us. They are looking at starting her on a saline solution to get her bowels moving, so we'll see what happens tomorrow.
That's all for today.
Peace,
T.M.
Madelinja was her usual self. She only had a few temper tantrums, mainly while we were there. I think she was saving them for us. They are looking at starting her on a saline solution to get her bowels moving, so we'll see what happens tomorrow.
That's all for today.
Peace,
T.M.
Friday, March 30, 2007
Daily Update - 29 March 2007
Today was fairly boring. Masinja is doing well on his vapotherm, and the doc is increasing his food intake. He's up to 10ml an hour for formula and is enjoying being swaddled. He did manage to pee on himself and the bed yesterday, so that was subtotal of excitement for him.
Madelinja is still a princess. Her attitude is getting better and she's not throwing as many tantrums. She's doing fairly well on her vent settings and will hopefully be able to come off in a couple of weeks. She's not eating yet, but the doc's working on that.
Well, that's all for today.
Peace,
T.M.
Madelinja is still a princess. Her attitude is getting better and she's not throwing as many tantrums. She's doing fairly well on her vent settings and will hopefully be able to come off in a couple of weeks. She's not eating yet, but the doc's working on that.
Well, that's all for today.
Peace,
T.M.
Wednesday, March 28, 2007
Daily Update - 28 March 2007
The doc tried to put Madelinja on the vapotherm today but she didn't tolerate it, so she went back on the vent. She lasted about an hour, but she's still too tired from all the surgeries over the past few days. Maybe when they start feeding her, she'll get some more strength and be able to move over.
Masinja was having some trouble regulating his body heat, so they placed him in an isolette. He seemed to be coming back to normal, so they'll probably take him out tomorrow. More to come on that. He seems to be doing well otherwise.
That's all for today.
Peace,
T.M.
Masinja was having some trouble regulating his body heat, so they placed him in an isolette. He seemed to be coming back to normal, so they'll probably take him out tomorrow. More to come on that. He seems to be doing well otherwise.
That's all for today.
Peace,
T.M.
Daily Update - 27 March 2007
Masinja is still enjoying his vapotherm. He's wearing clothes again and sucking on his pacifier. When he's not sucking on the pacifier, he's holding it up to his mouth and licking the side of it.
Madelinja is doing really well on her vent settings and the doc is chomping to put her on the vapotherm, too. I guess we'll see what happens.
That's all for today.
Peace,
T.M.
Madelinja is doing really well on her vent settings and the doc is chomping to put her on the vapotherm, too. I guess we'll see what happens.
That's all for today.
Peace,
T.M.
Tuesday, March 27, 2007
Daily Update - 26 March 2007
The Twinjas had their weekly eye exams today. Masinja looked good following his surgery last week, but sister wasn't that great. The eye doc decided that she needed some laser surgery, so they did it that afternoon. It went really well, and Madelinja behaved herself, so they'll have follow-up exams again next week.
Masinja is still doing pretty well on the vapotherm. He was working a little hard into the evening, so they ran extra labs on him to see if he's gonna stay at his current settings. We'll see how he did in the morning.
That's all for today.
Peace,
T.M.
Masinja is still doing pretty well on the vapotherm. He was working a little hard into the evening, so they ran extra labs on him to see if he's gonna stay at his current settings. We'll see how he did in the morning.
That's all for today.
Peace,
T.M.
Monday, March 26, 2007
Daily Update - 25 March 2007
Today was a better day. Masinja was resting pretty well today. He’s doing well with the vapotherm, and his oxygen sats have been in the 90s. He got a little agitated in the evening, but he was just tired. They’ve started feeding him again, and he seems to be tolerating it well. They gave him 5ml per hour for 5 hours, gave him a 1-hour break, and then started him back at 4ml per hour.
Madelinja is off her sedation, and back to her old self. She’s having her temper tantrums, and keeping the nurses busy. Her stomach looks pretty good. It’s still a little swollen, but not as bruised. She’s doing a little better on her vent settings, so we’re hoping that she’ll take off when they start feeding her, and be able to get rid of the vent. We’re also hoping she’ll do it in a more orderly fashion than her brother.
Well, that’s all for today.
Peace,
T.M.
Madelinja is off her sedation, and back to her old self. She’s having her temper tantrums, and keeping the nurses busy. Her stomach looks pretty good. It’s still a little swollen, but not as bruised. She’s doing a little better on her vent settings, so we’re hoping that she’ll take off when they start feeding her, and be able to get rid of the vent. We’re also hoping she’ll do it in a more orderly fashion than her brother.
Well, that’s all for today.
Peace,
T.M.
Daily Update - 24 March 2007
Yea! We’re 9 weeks old today!
Madelinja had a quiet day. She’s being weaned off her sedation and minus a few temper tantrums, is doing well. Her bandages were removed and they put steri strips on her incision. She’s a little bruised and swollen, but nothing abnormal considering the extent of her surgery. We’re hoping that she’ll be eating sometime next week.
Masinja, on the other hand, had an eventful Saturday. T.M.M. held him in the afternoon, and they had fun just rocking together in the rocking chair. I went to hold him that evening, and it got a little hairy. The nurse put him in my lap and he didn’t seem very happy, so they turned up his vent settings. He started getting really fussy, so we decided to put him back in his bed, and his vent tube came out. The nurses all scrambled to get him intubated again, but he wasn’t having it. He flailed and held his breath, and turned about 3 different shades of blue. They called the doc, and she put him on a machine called a “vapotherm”. It’s similar to the nasal cannula, but gives him a little more support. He was pretty happy with the vapotherm and was actually sucking on a pacifier later that night. So, all ended up well, but not before he gave our ulcers a run for their money.
That’s all for today.
Peace,T.M.
Madelinja had a quiet day. She’s being weaned off her sedation and minus a few temper tantrums, is doing well. Her bandages were removed and they put steri strips on her incision. She’s a little bruised and swollen, but nothing abnormal considering the extent of her surgery. We’re hoping that she’ll be eating sometime next week.
Masinja, on the other hand, had an eventful Saturday. T.M.M. held him in the afternoon, and they had fun just rocking together in the rocking chair. I went to hold him that evening, and it got a little hairy. The nurse put him in my lap and he didn’t seem very happy, so they turned up his vent settings. He started getting really fussy, so we decided to put him back in his bed, and his vent tube came out. The nurses all scrambled to get him intubated again, but he wasn’t having it. He flailed and held his breath, and turned about 3 different shades of blue. They called the doc, and she put him on a machine called a “vapotherm”. It’s similar to the nasal cannula, but gives him a little more support. He was pretty happy with the vapotherm and was actually sucking on a pacifier later that night. So, all ended up well, but not before he gave our ulcers a run for their money.
That’s all for today.
Peace,T.M.
Friday, March 23, 2007
Daily Update - 23 March 2007
Madelinja's abdominal surgery went fine. They reconnected all of her ostomies, and removed her appendix while they were in there. She had her reservoir removed today, too. She did well through the procedures and is resting pretty peacefully tonight. The doc projected that she'll start feeding in about 10 days. That will depend on how she does post op, so we'll let you know when she starts eating like her brother.
Masinja is doing quite well today, too. He's maintaining his body heat pretty well. He was wide awake tonight and a little fussy, but he seemed pretty happy otherwise.
That's all for today.
Peace,
T.M.
Masinja is doing quite well today, too. He's maintaining his body heat pretty well. He was wide awake tonight and a little fussy, but he seemed pretty happy otherwise.
That's all for today.
Peace,
T.M.
Thursday, March 22, 2007
Daily Update - 22 March 2007
Madelinja is still scheduled for her abdominal surgery tomorrow. She'll also have her reservoir removed. Too many of the tests on her fluid came back for staph infection, so they want to remove it. She's doing well otherwise and wouldn't let go of my hand tonight for just about anything.
Masinja is still doing well. He's actually wearing clothes! They took him off the warming function and put some clothes and blankets on him to see if he could maintain his body heat on his own.
I got to catch up with T.M.M. and actually hold my son tonight. I can't even put into words how awesome it was. One of the nurses said that I "looked happier than a tornado in a trailer park." I was a lot happier than even that.
Well, it's probably going to be a long day for Madelinja tomorrow, but she'll be on track to actually getting to eat like her brother. I'm hoping that everything goes well and that she will be able to eat in the next week.
That's all from here for now.
Peace,
T.M.
Masinja is still doing well. He's actually wearing clothes! They took him off the warming function and put some clothes and blankets on him to see if he could maintain his body heat on his own.
I got to catch up with T.M.M. and actually hold my son tonight. I can't even put into words how awesome it was. One of the nurses said that I "looked happier than a tornado in a trailer park." I was a lot happier than even that.
Well, it's probably going to be a long day for Madelinja tomorrow, but she'll be on track to actually getting to eat like her brother. I'm hoping that everything goes well and that she will be able to eat in the next week.
That's all from here for now.
Peace,
T.M.
Wednesday, March 21, 2007
Daily Update - 21 March 2007
Masinja is doing well with his feedings. He's up to 6ml per hour now, and is gaining some weight. He's up to 4lbs 15oz. He's resting pretty peacefully today. The doc tapped his reservoir and took 30ccs. She's worried it might be infected, so she put him on antibiotics. He's been pretty lethargic since his eye surgery, so the doc thinks he either got too much anesthesia, or that he might not be feeling well. Either way, the antibiotics should do him good. The doc also plans to start weening Masinja off the vent, as he's been doing well with his settings.
Madelinja's reservoir got tapped and the doc took 15ccs. She's having it tested again for infection. She actually injected some antibiotics directly into the reservoir to help fight off anything that might be there. The neurosurgeon will actually be looking at both of them to determine if he will remove their reservoirs or not.
Madelinja will definitely have surgery this Friday for her ostomies. The surgeon will be putting her completely back together, which means that she'll actually get to start feeding within the next week or so. It will be good, as she might actually catch up with her brother a bit.
That's all for today.
Peace,
T.M.
Madelinja's reservoir got tapped and the doc took 15ccs. She's having it tested again for infection. She actually injected some antibiotics directly into the reservoir to help fight off anything that might be there. The neurosurgeon will actually be looking at both of them to determine if he will remove their reservoirs or not.
Madelinja will definitely have surgery this Friday for her ostomies. The surgeon will be putting her completely back together, which means that she'll actually get to start feeding within the next week or so. It will be good, as she might actually catch up with her brother a bit.
That's all for today.
Peace,
T.M.
Daily Update - 20 March 2007
Yea, we're 2 months old today!
Masinja's eye surgery went well. The surgeon only needed about an hour and a half to do the procedure. Masinja's doing well, and is up to 3ml of formula every hour. If he continues to do well, they'll up it.
Madelinja had a pretty good day also. She got a little upset when they wheeled her brother past her, but she was happy again as soon as he came back. Her vent settings are still a little higher than we'd like, but she's getting there. The doc is still worried about her reservoir being infected and will probably tap her again to see if the infection will show up in the labs again. We'll see what tomorrow brings.
That's all for today.
Peace,
T.M.
Masinja's eye surgery went well. The surgeon only needed about an hour and a half to do the procedure. Masinja's doing well, and is up to 3ml of formula every hour. If he continues to do well, they'll up it.
Madelinja had a pretty good day also. She got a little upset when they wheeled her brother past her, but she was happy again as soon as he came back. Her vent settings are still a little higher than we'd like, but she's getting there. The doc is still worried about her reservoir being infected and will probably tap her again to see if the infection will show up in the labs again. We'll see what tomorrow brings.
That's all for today.
Peace,
T.M.
Tuesday, March 20, 2007
Daily Update - 19 March 2007
Well, just as quickly things change, they change again. The Twinjas are both back on the original ventilators. They were both having pretty good days. Masinja was at 3ml of formula per hour, and at very low vent settings.
Madelinja was doing ok as well, although, it's becoming more apparent that her ostomies are in need of being put back together. They were becoming enlarged, and not looking so hot, so the doc is pushing the surgeon to re-evaluate her and get her scheduled.
Their eye exams went well. Madelinja is doing better than Masinja. He'll require surgery tomorrow. They'll take a laser and remove some blood vessels in his eyes to keep them from causing damage and making him blind. It'll be a long procedure, so we'll have to give an update when it's all done.
Finally, we'll end on really great news. T.M.M. actually got to "hold" Masinja yesterday. It was pretty awesome for her, and the nurse took pics, so we have to get them uploaded to the photobucket so everyone can see them. Hopefully we get a chance to actually hold them both soon.
Well, that's all for today.
Peace,
T.M.
Madelinja was doing ok as well, although, it's becoming more apparent that her ostomies are in need of being put back together. They were becoming enlarged, and not looking so hot, so the doc is pushing the surgeon to re-evaluate her and get her scheduled.
Their eye exams went well. Madelinja is doing better than Masinja. He'll require surgery tomorrow. They'll take a laser and remove some blood vessels in his eyes to keep them from causing damage and making him blind. It'll be a long procedure, so we'll have to give an update when it's all done.
Finally, we'll end on really great news. T.M.M. actually got to "hold" Masinja yesterday. It was pretty awesome for her, and the nurse took pics, so we have to get them uploaded to the photobucket so everyone can see them. Hopefully we get a chance to actually hold them both soon.
Well, that's all for today.
Peace,
T.M.
Sunday, March 18, 2007
Daily Update - 18 March 2007
Masinja took a step back today. They found a lot of phlegm and mucous junk in his mouth and breathing tube, so they started him on antibiotics. They also stopped feeding him, because he wasn't processing it as fast as he should. Most of it was going through him right into the ostomy bag. They're going to restart his feeding tomorrow at 5ml per hour and see how that goes. They have him pretty sedated as he was agitated earlier. The doc really wants to ween him off the oscillator and get him back on the other vent, so keeping him calm will help the cause.
Madelinja actually had a pretty good day. She had minimal attitude and was doing well with her vent settings. There's still concern that her reservoir might be infected, but we'll see what the neurosurgeon thinks tomorrow. Depending on what he sees, he might remove it.
Laser surgery for their eyes is still tentative Monday/Tuesday. We'll find out after they get their exams.
Good news is that they're still growing. Madelinja is up to 14.75" and Masinja is 16.5" long. That's some decent progress for 8 weeks.
Well, that's all for today.
Peace,
T.M.
Madelinja actually had a pretty good day. She had minimal attitude and was doing well with her vent settings. There's still concern that her reservoir might be infected, but we'll see what the neurosurgeon thinks tomorrow. Depending on what he sees, he might remove it.
Laser surgery for their eyes is still tentative Monday/Tuesday. We'll find out after they get their exams.
Good news is that they're still growing. Madelinja is up to 14.75" and Masinja is 16.5" long. That's some decent progress for 8 weeks.
Well, that's all for today.
Peace,
T.M.
Daily Update - 17 March 2007
Today is St. Patrick's Day, and we're 8 weeks old!
Masinja is up to 11ml of food every hour. He's actually off the IV food, and is just getting a saline drip to keep the line open. His ostomy is working very well, and the doc is pleased with his progress so far.
Madelinja might still have a problem with her reservoir. The doc is not sure, but there's a possibility it is infected. The bad news is that it might have to removed, and we won't know the consequences of that until it happens. The good news is that her fluid is now straw colored like her brother's, so it seems that she's clearing up in the department. They'll both have cranial ultrasounds again on Monday, so we'll see exactly what progress they've made.
Speaking of Monday, they will both get eye exams again. It looks like they both will get laser surgery to clear up their eyes, and make sure they retain their vision. Chances are they won't have as good peripheral vision when they grow up, but at least they will be able to see. We won't know about the laser surgery until Monday, so we'll keep you posted.
That's all for St. Patty's Day!
Peace,
T.M.
Masinja is up to 11ml of food every hour. He's actually off the IV food, and is just getting a saline drip to keep the line open. His ostomy is working very well, and the doc is pleased with his progress so far.
Madelinja might still have a problem with her reservoir. The doc is not sure, but there's a possibility it is infected. The bad news is that it might have to removed, and we won't know the consequences of that until it happens. The good news is that her fluid is now straw colored like her brother's, so it seems that she's clearing up in the department. They'll both have cranial ultrasounds again on Monday, so we'll see exactly what progress they've made.
Speaking of Monday, they will both get eye exams again. It looks like they both will get laser surgery to clear up their eyes, and make sure they retain their vision. Chances are they won't have as good peripheral vision when they grow up, but at least they will be able to see. We won't know about the laser surgery until Monday, so we'll keep you posted.
That's all for St. Patty's Day!
Peace,
T.M.
Friday, March 16, 2007
Daily Update - 16 March 2007
Masinja had a good day. He's up to 8ml of formula per hour. He even managed to pee on his nurse. She wasn't fast enough with the diaper, and he got her and the floor pretty good. I guess he really had to go.
Madelinja had an ok day. She had a pretty good fit while we were there tonight. She calmed down after a little while and went back to normal, but worried us for a minute or two. She's been doing better this week, but still having issues.
Well, that's all for today.
Peace,
T.M.
Madelinja had an ok day. She had a pretty good fit while we were there tonight. She calmed down after a little while and went back to normal, but worried us for a minute or two. She's been doing better this week, but still having issues.
Well, that's all for today.
Peace,
T.M.
Thursday, March 15, 2007
Daily Update - 15 March 2007
Well, Masinja is doing well today. He's up to 5ml of formula per hour, and looking to increase to 6ml per hour tonight. He seemed pretty happy and his vent settings hadn't changed much, so that's good news. He's actually starting to look bigger every time we see him.
Madelinja also seems to be feeling a little better. Her vent settings varied some today, and she was a little agitated when we were up there tonight, but overall she was not too bad. She's still on antibiotics, and they seem to be doing their job, so we hope she keeps moving forward.
Well, that's all for now.
Peace,
T.M.
Madelinja also seems to be feeling a little better. Her vent settings varied some today, and she was a little agitated when we were up there tonight, but overall she was not too bad. She's still on antibiotics, and they seem to be doing their job, so we hope she keeps moving forward.
Well, that's all for now.
Peace,
T.M.
Wednesday, March 14, 2007
Daily Update - 14 March 2007
Masinja is doing really well with his feedings. He's up to 4ml per hour, and will possibly go to 5ml tomorrow. He's been a good trooper, and is doing well on his vent settings, too. He was a little agitated tonight, but otherwise, he's doing fine.
Madelinja had an eventful day. She managed to get her breathing tube replaced. It was loose and when the nurse repositioned her, and it pulled free. They put it back in pretty quickly, and she's doing fine. She seemed ok tonight, although, she's still a little agitated. She's doing better on her vent settings, and will hopefully come down some more tomorrow.
Her reservoir still looks good, and there seems to be no signs of infection surrounding that. She's still on antibiotics for her lung, so hopefully tomorrow we'll see when she can come off those.
Well, that's all for today.
Peace,
T.M.
Madelinja had an eventful day. She managed to get her breathing tube replaced. It was loose and when the nurse repositioned her, and it pulled free. They put it back in pretty quickly, and she's doing fine. She seemed ok tonight, although, she's still a little agitated. She's doing better on her vent settings, and will hopefully come down some more tomorrow.
Her reservoir still looks good, and there seems to be no signs of infection surrounding that. She's still on antibiotics for her lung, so hopefully tomorrow we'll see when she can come off those.
Well, that's all for today.
Peace,
T.M.
Daily Update - 13 March 2007
Madelinja is now on 2 antibiotics to help with her lung infection. She's also on sedatives to help keep her calm. Her oscillator settings have been lowered and she seems to be a lot more comfortable.
Masinja is still doing well. He is up to 2ml of forumula an hour, and will be moved to 3ml if he tolerates his current level. He seems to be pretty happy, and has been resting well. Now, he just needs to get fattened up so we can ween him off the oscillator, and get him back to the regular vent. Once he's back on the regular vent, they should be able to ween him off the ventilator completely. We just hope he keeps making solid progress.
Well, that's all for now.
Peace,
T.M.
Masinja is still doing well. He is up to 2ml of forumula an hour, and will be moved to 3ml if he tolerates his current level. He seems to be pretty happy, and has been resting well. Now, he just needs to get fattened up so we can ween him off the oscillator, and get him back to the regular vent. Once he's back on the regular vent, they should be able to ween him off the ventilator completely. We just hope he keeps making solid progress.
Well, that's all for now.
Peace,
T.M.
Tuesday, March 13, 2007
Daily Update - 12 March 2007
Well, Madelinja has been moved to an oscillator just like her brother. The doc thinks she could have pneumonia, but we won't know until tomorrow. They started her on antibiotics just in case. She was still pretty agitated this morning, but has since calmed down. They started giving her sedation to help keep her calm, and it seems to be working.
Masinja is doing swell. They were going to start feeding him at midnight. They gave him a saline solution and he did well with that. His ostomy is working fine, so he should do well with feeding, barring any insanity.
Well, that's all for now.
Peace,
T.M.
Masinja is doing swell. They were going to start feeding him at midnight. They gave him a saline solution and he did well with that. His ostomy is working fine, so he should do well with feeding, barring any insanity.
Well, that's all for now.
Peace,
T.M.
Sunday, March 11, 2007
Daily Update - 11 March 2007
Masinja had another good day. He's doing pretty well with his vent settings, and appears to be pretty happy. He was just hanging out, and being a good boy.
Madelinja, on the other hand, has been a troublemaker for most of last night and today. She finally calmed down this evening, and was doing ok when we left. She was really sensitive to sound today, and got pretty upset every time she heard any loud noise. They actually had to move the baby that was next to her, because the crying was making her that upset. It was pretty hard to watch, because there wasn't much we could do for her. She ended up having 20ccs drained from her reservoir, lab work, x-rays, and a blood transfusion. Her vent settings were way up until this evening, too. They're still higher than they normally are, but not as high as they were this morning when we went in. Hopefully she'll stay calm overnight, and be a happier baby in the morning.
Well, that's all for now.
Peace,
T.M.
Madelinja, on the other hand, has been a troublemaker for most of last night and today. She finally calmed down this evening, and was doing ok when we left. She was really sensitive to sound today, and got pretty upset every time she heard any loud noise. They actually had to move the baby that was next to her, because the crying was making her that upset. It was pretty hard to watch, because there wasn't much we could do for her. She ended up having 20ccs drained from her reservoir, lab work, x-rays, and a blood transfusion. Her vent settings were way up until this evening, too. They're still higher than they normally are, but not as high as they were this morning when we went in. Hopefully she'll stay calm overnight, and be a happier baby in the morning.
Well, that's all for now.
Peace,
T.M.
Saturday, March 10, 2007
Daily Update - 10 March 2007
We're 7 weeks old today! Yea!
I put up some new pics:
http://s29.photobucket.com/albums/c297/neubywankaneuby/Madelynn%20and%20Mason/
Just click on the folders; They're labeled by date.
Well, I jinxed us by saying that Madelinja had minimal attitude yesterday. She had a difficult day. They were feeding her 1ml of formula every hour, but she wasn't processing it, so they stopped feeding her. She got really MAD! She's been a troublemaker all day, and had the doc pulling his hair out. She was doing ok this evening, but her vent settings were up pretty high.
Masinja is doing ok. He still seems a little agitated, but only when they were moving him around. Otherwise, he seems to be tolerating things well. His vent settings were actually down a little bit, so that's good, too.
Well, that's all for today.
Peace,
T.M.
I put up some new pics:
http://s29.photobucket.com/albums/c297/neubywankaneuby/Madelynn%20and%20Mason/
Just click on the folders; They're labeled by date.
Well, I jinxed us by saying that Madelinja had minimal attitude yesterday. She had a difficult day. They were feeding her 1ml of formula every hour, but she wasn't processing it, so they stopped feeding her. She got really MAD! She's been a troublemaker all day, and had the doc pulling his hair out. She was doing ok this evening, but her vent settings were up pretty high.
Masinja is doing ok. He still seems a little agitated, but only when they were moving him around. Otherwise, he seems to be tolerating things well. His vent settings were actually down a little bit, so that's good, too.
Well, that's all for today.
Peace,
T.M.
Friday, March 9, 2007
Daily Update - 9 March 2007
Well, today was pretty boring, which is always good. Masinja was doing well, although he got a bit agitated this evening. His ostomy is starting to work, so he'll start feeding pretty soon.
Madelinja was resting peacefully, and managed to have minimal attitude today. We're hoping that we can get her ostomies put back together soon, so she can start eating, too.
Well, that's all there is to report.
Peace,
T.M.
Madelinja was resting peacefully, and managed to have minimal attitude today. We're hoping that we can get her ostomies put back together soon, so she can start eating, too.
Well, that's all there is to report.
Peace,
T.M.
Daily Update - 8 March 2007
Masinja was doing fine today. He was resting pretty peacefully, and is still projected to start feedings next week. As soon as his ostomy is functioning properly, the feedings will ensue.
Madelinja is doing fine, also. It appears the bump on her stomach is nothing. Apparently we misunderstood about her reservoir, too. The neurosurgeon actually said it looked fine, and that he didn't need to remove it. The doc drained 25ccs off it, and won't drain it again unless it's absolutely necessary. The color is now a lot lighter, almost like a green tea, compared to the original cholocate color. The protein levels are also down, which is good. They're actually testing it to see if there's an infection, so we should find out the results soon.
Well, that's all for today.
Peace,
T.M.
Madelinja is doing fine, also. It appears the bump on her stomach is nothing. Apparently we misunderstood about her reservoir, too. The neurosurgeon actually said it looked fine, and that he didn't need to remove it. The doc drained 25ccs off it, and won't drain it again unless it's absolutely necessary. The color is now a lot lighter, almost like a green tea, compared to the original cholocate color. The protein levels are also down, which is good. They're actually testing it to see if there's an infection, so we should find out the results soon.
Well, that's all for today.
Peace,
T.M.
Wednesday, March 7, 2007
Daily Update - 7 March 2007
Masinja is doing ok today. He's resting peacefully, and didn't seem too distressed until they tried putting him on his belly. He didn't like it very much, so they put him on his back and he's been fine since.
Madelinja didn't get her reservoir out today. The neurosurgeon was concerned that he might do more damage removing it, than leaving it alone. However, we're still worried about it possibly getting infected. The doc is supposed to draw fluid off it tomorrow and have it tested to see if there's an infection present. Hopefully there isn't, because we don't know what the course of action will be to fix it, or what damage it might do.
Madelinja also had a dye test done on her bowels today. It worked pretty well, and the doc was pretty pleased with the results. However, we noticed that Madelinja developed a small lump in her lower abdomen, so we'll be waiting for the doc to tell us what it is. Hopefully it's not a problem.
On an upbeat note, we got to see their cranial ultrasounds today. Both looked to be making good progress with their hemorrhaging, and the doc thinks Masinja might be able to make it without needing a shunt. That would be really great if it comes true.
Well, that's all for this busy day. It's been stressful to say the least....
Peace,
T.M.
Madelinja didn't get her reservoir out today. The neurosurgeon was concerned that he might do more damage removing it, than leaving it alone. However, we're still worried about it possibly getting infected. The doc is supposed to draw fluid off it tomorrow and have it tested to see if there's an infection present. Hopefully there isn't, because we don't know what the course of action will be to fix it, or what damage it might do.
Madelinja also had a dye test done on her bowels today. It worked pretty well, and the doc was pretty pleased with the results. However, we noticed that Madelinja developed a small lump in her lower abdomen, so we'll be waiting for the doc to tell us what it is. Hopefully it's not a problem.
On an upbeat note, we got to see their cranial ultrasounds today. Both looked to be making good progress with their hemorrhaging, and the doc thinks Masinja might be able to make it without needing a shunt. That would be really great if it comes true.
Well, that's all for this busy day. It's been stressful to say the least....
Peace,
T.M.
Daily Update - 6 March 2007
Masinja had his surgery today. He did well, and now has an ostomy like his sister. The doc plans on feeding him as soon as possible, so we'll see how it all pans out. His vitals were all good, and he was resting pretty peacefully.
Madelinja's reservoir removal is scheduled for Wednesday. We'll let you know how that turns out, too.
We got the results of their eye exams. Masinja's are worse than Madelinja's, and he'll probably require laser surgery in the next few weeks for that. The blood vessels in the eyes force the retina to wrinkle, and they have to be removed, otherwise he could go blind. He has a follow-up appointment next week, and they'll decide on the surgery then.
That's all for now.
Peace,
T.M.
Madelinja's reservoir removal is scheduled for Wednesday. We'll let you know how that turns out, too.
We got the results of their eye exams. Masinja's are worse than Madelinja's, and he'll probably require laser surgery in the next few weeks for that. The blood vessels in the eyes force the retina to wrinkle, and they have to be removed, otherwise he could go blind. He has a follow-up appointment next week, and they'll decide on the surgery then.
That's all for now.
Peace,
T.M.
Monday, March 5, 2007
Daily Update - 5 March 2007
Masinja is set for surgery tomorrow. It will take place some time between 1000 and 1300 hours. I spoke to the surgeon on the phone tonight, and he said there's a 75% chance that Masinja will have an ostomy like his sister. The surgeon is hoping that he might be able to fix everything without having to do an ostomy, but we're prepared either way.
The doc wants to start feeding Masinja as soon as possible, so this will be a step forward to him getting stronger. She drained 30cc's of fluid from his brain drain, and it's the same color as it was, so that's not bad.
Madelinja's reservoir is going to have to be removed. It's projected for Wednesday, but that's not a definite yet. The neurosurgeon didn't like the gap that opened in the incision and said if we don't remove it, we'll risk infection. Infection is not good. He'll end up putting in another reservoir in a couple of weeks, so we'll let you know how it moves along. Otherwise, she's not doing too badly. She's having her moments, but not as many.
The doc drained 25cc's from her brain drain, and sent some to the lab for screening. The protein content has dropped from 1,600 to 700, so that's good. It's still tea colored, so she still has some work to do, but she is making some progress.
Lastly, the Twinjas both had eye exams and blood transfusions. We won't know the results of the eye exams until we get with the doc tomorrow, so hopefully we'll have some news regarding that. We do know they're scheduled for another eye exam in 2 weeks, so we'll see if they found anything.
Well, that's all for today.
Peace,
T.M.
The doc wants to start feeding Masinja as soon as possible, so this will be a step forward to him getting stronger. She drained 30cc's of fluid from his brain drain, and it's the same color as it was, so that's not bad.
Madelinja's reservoir is going to have to be removed. It's projected for Wednesday, but that's not a definite yet. The neurosurgeon didn't like the gap that opened in the incision and said if we don't remove it, we'll risk infection. Infection is not good. He'll end up putting in another reservoir in a couple of weeks, so we'll let you know how it moves along. Otherwise, she's not doing too badly. She's having her moments, but not as many.
The doc drained 25cc's from her brain drain, and sent some to the lab for screening. The protein content has dropped from 1,600 to 700, so that's good. It's still tea colored, so she still has some work to do, but she is making some progress.
Lastly, the Twinjas both had eye exams and blood transfusions. We won't know the results of the eye exams until we get with the doc tomorrow, so hopefully we'll have some news regarding that. We do know they're scheduled for another eye exam in 2 weeks, so we'll see if they found anything.
Well, that's all for today.
Peace,
T.M.
Sunday, March 4, 2007
Daily Update - 4 March 2007
Masinja had a pretty mellow day. He was a little touchy tonight, but nothing more than he usually gets. We just let him sleep and then he's happy for a while.
Madelinja's reservoir was actually oozing/leaking a little bit around the incision. You can actually see part of it through a small opening in the incision. They cleaned around it really good and put some gauze on it, but we'll see if the doc will do anything else with it tomorrow morning.
I changed her highness' linens again tonight, and she didn't manage to pee on everything, so that was a happy note. Her nurse was pretty happy, too.
Well, that's it for today.
Peace,
T.M.
Madelinja's reservoir was actually oozing/leaking a little bit around the incision. You can actually see part of it through a small opening in the incision. They cleaned around it really good and put some gauze on it, but we'll see if the doc will do anything else with it tomorrow morning.
I changed her highness' linens again tonight, and she didn't manage to pee on everything, so that was a happy note. Her nurse was pretty happy, too.
Well, that's it for today.
Peace,
T.M.
Saturday, March 3, 2007
Daily Update - 3 March 2007
Well, tonight was interesting. I helped change the linens and give my daughter a sponge bath, and she preceded to pee on the bed 3 times. She had impeccable timing as I was holding her in the air for 2 of them. The poor nurse had just finished changing the linens, when Madelinja did it the third time. I hope she behaves the rest of the night.
Masinja was just chilling tonight. He was a little fidgety, but nothing major. He's still scheduled for surgery on Tuesday as far as we know, so we'll see what happens. We'll definitely let you know when it occurs and how he fares.
Other than that, nothing exciting to report.
Peace,
T.M.
Masinja was just chilling tonight. He was a little fidgety, but nothing major. He's still scheduled for surgery on Tuesday as far as we know, so we'll see what happens. We'll definitely let you know when it occurs and how he fares.
Other than that, nothing exciting to report.
Peace,
T.M.
Friday, March 2, 2007
Daily Update - 2 March 2007
Madelinja had 25ccs drawn off her brain drain today. It was tea colored, which is better than the chocolate color it was originally. It seems to be an improvement, just not a tremendous one. She's having more fits now, but we think it's in direct relation to being tapped. She seems to get more agitated after they drain her fluid.
Masinja had a pretty boring day, which is good. As far as we know, his surgery is still scheduled for Tuesday. If it changes, we'll let you know.
Other than that, nothing to report. Boring is good!
Peace,
T.M.
Masinja had a pretty boring day, which is good. As far as we know, his surgery is still scheduled for Tuesday. If it changes, we'll let you know.
Other than that, nothing to report. Boring is good!
Peace,
T.M.
Thursday, March 1, 2007
Daily Update - 1 March 2007
Well, it looks like Masinja's surgery will be this Tuesday. They did the reverse dye test and confirmed a blockage in his intestines. After they clear the blockage, the doc intends on starting to feed him, so we'll see how it all works out. Otherwise he's doing fine and just chilling out. He weighed in at 3lbs 4.4ozs today.
Madelinja had a better day today. A lot less fits, but still a few too few many for me. They've decided to change her ostomy bag more than once a day now. It seems the skin around her ostomies is getting irritated, so they're going to try and keep it cleaner. She weighed in at 2lbs 7.7ozs today.
That's all for now.
Peace,
T.M.
Madelinja had a better day today. A lot less fits, but still a few too few many for me. They've decided to change her ostomy bag more than once a day now. It seems the skin around her ostomies is getting irritated, so they're going to try and keep it cleaner. She weighed in at 2lbs 7.7ozs today.
That's all for now.
Peace,
T.M.
Wednesday, February 28, 2007
Daily Update - 28 February 2007
We got some news from the surgeon about Masinja's pending surgery. He's going to do another dye test, but this time it will be from the reverse end, if you know what I mean. They are going to watch him over the weekend, and will determine when/if the surgery will take place next week. Otherwise, Masinja is doing good.
Madelinja, on the other hand, has had some attitude today. She seems to be coordinating flare ups with her mother. They both got upset about the same time yesterday, and were both upset tonight at the same time. Oh, the bond between mother and daughter... I'm in serious trouble.
Well, that's all for today.
Peace,
T.M.
Madelinja, on the other hand, has had some attitude today. She seems to be coordinating flare ups with her mother. They both got upset about the same time yesterday, and were both upset tonight at the same time. Oh, the bond between mother and daughter... I'm in serious trouble.
Well, that's all for today.
Peace,
T.M.
Daily Update - 27 February 2007
I got to hold Masinja up while the nurse changes his linens today. I also got to change his diaper. He weighed in at 3lbs 1oz! He's actually putting on some weight now, which is nice to see. He looked a little swollen around his face and neck, so he looked a little weird, but he's doing fine. We're still waiting on a surgery date, so hopefully everything will be coordinated soon.
Madelinja was her usual quiet self. T.M.M. got to help change her linens and diaper. She's also gaining more weight and is 2lbs 6ozs. She still looks tiny compared to her brother, but she's ok with that.
That's all from here.
Peace,
T.M.
P.S. On the photobucket page, there are folders above the 2 pics you see of the Twinjas. Click on the folders to see more pictures. The folders are labeled by the date the pictures were taken.
Madelinja was her usual quiet self. T.M.M. got to help change her linens and diaper. She's also gaining more weight and is 2lbs 6ozs. She still looks tiny compared to her brother, but she's ok with that.
That's all from here.
Peace,
T.M.
P.S. On the photobucket page, there are folders above the 2 pics you see of the Twinjas. Click on the folders to see more pictures. The folders are labeled by the date the pictures were taken.
Monday, February 26, 2007
Daily Update - 26 February 2007
Masinja tried to be Harry Houdiaper again today. T.M.M. caught him with one of the flaps undone, and getting ready to undo the other. If he's this smart already, we're in some real trouble later on down the road. He had a good day today, and spent most of it resting peacefully. He opened his eyes for a while tonight, and got out of line a few times, but he's been a good boy overall.
I got to hold Madelinja, and change her diaper and linens again today. She's so tiny! She is up to 2lbs 4ozs now, so she's actually starting to gain a little more weight. She still has her ostomies and they're working like they're supposed to, so that's good. Masinja is 2lbs 12ozs, just in case I forget to type it later.
We still don't have a firm date on Masinja's surgery. The doc and surgeon are still debating on what's going to happen with that. I hope they make a decision soon, because I'd like it to be resolved so we can start feeding them both.
Madelinja's breathing tube was making funny noises tonight, but it was because she's starting to outgrow the size tube she currently has. The tube was making little squeaking sounds when she was breathing out, but her vitals looked fine, so we'll see if the doc re-intubates her tomorrow.
Well, that's all that I can remember for now.
Peace,
T.M.
I got to hold Madelinja, and change her diaper and linens again today. She's so tiny! She is up to 2lbs 4ozs now, so she's actually starting to gain a little more weight. She still has her ostomies and they're working like they're supposed to, so that's good. Masinja is 2lbs 12ozs, just in case I forget to type it later.
We still don't have a firm date on Masinja's surgery. The doc and surgeon are still debating on what's going to happen with that. I hope they make a decision soon, because I'd like it to be resolved so we can start feeding them both.
Madelinja's breathing tube was making funny noises tonight, but it was because she's starting to outgrow the size tube she currently has. The tube was making little squeaking sounds when she was breathing out, but her vitals looked fine, so we'll see if the doc re-intubates her tomorrow.
Well, that's all that I can remember for now.
Peace,
T.M.
Daily Update - 25 February 2007
Madelinja's brain drain was tapped today. The doc took 23cc's of fluid. She's started having more attitude after the procedure, so we're starting to think there's a correlation between her draining and her fits. They put her on a little bit of sedative to keep her from becoming too agitated, so she's pretty comfy now.
Masinja's stomach surgery will probably be sometime this week. The doc is pushing the surgeon to fix the perforation in his bowels, so we can start moving towards feeding him. We're still not sure exactly when it will happen, but we'll let you know ASAP.
Other than that, they seem to be doing well.
Peace,
T.M.
Masinja's stomach surgery will probably be sometime this week. The doc is pushing the surgeon to fix the perforation in his bowels, so we can start moving towards feeding him. We're still not sure exactly when it will happen, but we'll let you know ASAP.
Other than that, they seem to be doing well.
Peace,
T.M.
Saturday, February 24, 2007
Daily Update - 24 February 2007
Madelinja's head circumference has been the same for 2 days in a row, so the doc hasn't had to drain her brain. She's resting pretty comfortably today. Her ventilator settings have been turned down, and she's tolerating it pretty well, so that's good news, too.
Masinja has been perfecting his escape skills. He successfully removed his diaper today. It was actually sitting on the bed next to him, and the nurse had to put it back on. I think we're going to change his name to "Harry Houdiaper."
Well, that's all for today.
Peace,
T.M.
Masinja has been perfecting his escape skills. He successfully removed his diaper today. It was actually sitting on the bed next to him, and the nurse had to put it back on. I think we're going to change his name to "Harry Houdiaper."
Well, that's all for today.
Peace,
T.M.
Daily Update - 23 February 2007
Sorry this is late.
We had some excitement last night as the power went out in the NICU, and it took them a couple of minutes to get Masinja's ventilator running again. They basically forgot to put a plug in the end of the hose. All was good afterwards. His brain drain got tapped again. They got about 6cc's of fluid, and then fresh blood, so they stopped. They were going to remove his stitches from around the drain, but he was agitated, so they decided to do it later.
Madelinja got her drain stitches out, and her hair washed. Like any good female, she loved having her hair washed, and being pampered and spoiled. I've got a long road ahead of me.
Masinja's stomach surgery is still on hold for now. We'll see how things look in a week or two, and let you know what happens.
That's all for now.
Peace,
T.M.
We had some excitement last night as the power went out in the NICU, and it took them a couple of minutes to get Masinja's ventilator running again. They basically forgot to put a plug in the end of the hose. All was good afterwards. His brain drain got tapped again. They got about 6cc's of fluid, and then fresh blood, so they stopped. They were going to remove his stitches from around the drain, but he was agitated, so they decided to do it later.
Madelinja got her drain stitches out, and her hair washed. Like any good female, she loved having her hair washed, and being pampered and spoiled. I've got a long road ahead of me.
Masinja's stomach surgery is still on hold for now. We'll see how things look in a week or two, and let you know what happens.
That's all for now.
Peace,
T.M.
Friday, February 23, 2007
Daily Update - 22 February 2007
Well, today was a good day. It was boring, and we like that. The Twinjas are doing well, and resting pretty peacefully. They've had a few fits, but nothing major, so that's good. We'll still be waiting on when/if Masinja will have surgery on his belly, and when Madelinja will have surgery to repair hers. Other than that, nothing significant to report.
Until tomorrow.
Peace,
T.M.
Until tomorrow.
Peace,
T.M.
Wednesday, February 21, 2007
Daily Update - 21 February 2007
Actually saw the surgeon today. He's not in a hurry to do surgery on either of the Twinjas right away. He wants them to get bigger first, but that's a hard path with their only nutrition being IV fluids. We'll have to see how it plays out, and see how stable they remain. He needs to put Madelinja back together, and possibly fix Masinja's perforation.
They tried to put Masinja back on the original ventilator, but he didn't like it very much. He was very uncomfortable. He will have to go back on the original ventilator before they can ween him off, so this might become interesting.
On the ventilator note, the nurses changed out both of the Twinja's breathing tubes, and took a picture of Masinja's face for us. I'll be scanning it in and putting it up on the photobucket in the next day or two, so keep an eye out.
Lastly, Madelinja is still having some attitude issues. She's still adjusting from the brain hemorrhage, and the changes of having the extra fluid drained. It usually causes issues with their vitals, but for the most part, she's doing ok. She has her moments, which usually gives us moments.
Well, that's all for today.
Peace,
T.M.
They tried to put Masinja back on the original ventilator, but he didn't like it very much. He was very uncomfortable. He will have to go back on the original ventilator before they can ween him off, so this might become interesting.
On the ventilator note, the nurses changed out both of the Twinja's breathing tubes, and took a picture of Masinja's face for us. I'll be scanning it in and putting it up on the photobucket in the next day or two, so keep an eye out.
Lastly, Madelinja is still having some attitude issues. She's still adjusting from the brain hemorrhage, and the changes of having the extra fluid drained. It usually causes issues with their vitals, but for the most part, she's doing ok. She has her moments, which usually gives us moments.
Well, that's all for today.
Peace,
T.M.
Tuesday, February 20, 2007
Daily Update - 20 February 2007
Yea! The Twinjas are officially 1-month-olds today!
The cranial ultrasounds yielded some positive results. Both Masinja's and Madelinja's ventricles are smaller, and it seems the fresh blood that was coming out of Masinja's drain was a result of how the reservoir is sitting, and not indicative of additional problems. These things don't mean they're out of the woods, as it will still be a while before we know if any damage was caused by the hemorrhaging.
Masinja's feeding has been postponed. The dye test showed a small leak in his bowels. The surgeon wants to wait 2 to 3 more weeks before doing anything major. They're still hoping it will heal itself. They'll be keeping a pretty close eye on his progress, and hopefully he'll still avoid surgery.
Both seem to have jaundice, and will be put on meds to help cure it. They were under the tanning lamps for a while, but it seems like the meds will be the better way to go.
Finally, even after all this stuff, they're still hanging in there and getting some rest. He was sleepy tonight, while little girl was showing some attitude. They're both good little fighters, and they're doing a good job with what they have.
That's all for tonight.
Peace,
T.M.
The cranial ultrasounds yielded some positive results. Both Masinja's and Madelinja's ventricles are smaller, and it seems the fresh blood that was coming out of Masinja's drain was a result of how the reservoir is sitting, and not indicative of additional problems. These things don't mean they're out of the woods, as it will still be a while before we know if any damage was caused by the hemorrhaging.
Masinja's feeding has been postponed. The dye test showed a small leak in his bowels. The surgeon wants to wait 2 to 3 more weeks before doing anything major. They're still hoping it will heal itself. They'll be keeping a pretty close eye on his progress, and hopefully he'll still avoid surgery.
Both seem to have jaundice, and will be put on meds to help cure it. They were under the tanning lamps for a while, but it seems like the meds will be the better way to go.
Finally, even after all this stuff, they're still hanging in there and getting some rest. He was sleepy tonight, while little girl was showing some attitude. They're both good little fighters, and they're doing a good job with what they have.
That's all for tonight.
Peace,
T.M.
Monday, February 19, 2007
Daily Update - 19 February 2007
The Twinjas had their cranial ultrasounds today. The doctor still needs to look at them, but the technician said they look like there hasn't been further damage, so we'll have to see what the doc thinks tomorrow.
They also had their first eye exams today. The doctor said it's too early to tell if they have any problems. Our main concern is a prolonged stay on the ventilators, because too much oxygen can affect their eyesight. We'll have to find out when their next eye exam will be.
They ran dye through Masinja's belly today. It was moving a little slow, so they were going to try it several more times through the night. We're hoping that all goes well, so they can start feeding him soon. We'll let you know the results tomorrow.
Other than that, Madelinja seems to be doing well with her new vent settings. She hasn't had as many problems today. Masinja continues to rest peacefully, too.
That's all for today.
Peace,
T.M.
They also had their first eye exams today. The doctor said it's too early to tell if they have any problems. Our main concern is a prolonged stay on the ventilators, because too much oxygen can affect their eyesight. We'll have to find out when their next eye exam will be.
They ran dye through Masinja's belly today. It was moving a little slow, so they were going to try it several more times through the night. We're hoping that all goes well, so they can start feeding him soon. We'll let you know the results tomorrow.
Other than that, Madelinja seems to be doing well with her new vent settings. She hasn't had as many problems today. Masinja continues to rest peacefully, too.
That's all for today.
Peace,
T.M.
Sunday, February 18, 2007
Daily Update - 18 February 2007
Masinja had a really good day today. He's doing well on the oscillator, and hopefully will be ready to start eating this week. We'll find out about that soon, and let you know.
Madelinja was having a rough time on her vent, but the doc changed the settings so that it would automatically adjust to her breathing pattern, and she seems to be doing a lot better. She still has her little attitude, but that's fine as long as she keeps fighting.
They drained another 15cc's from her brain reservoir today, but didn't drain anything from Masinja. They should both be getting the cranial ultrasounds this week, so we'll see what kind of progress they've made.
That's all for today.
Peace,
T.M.
Madelinja was having a rough time on her vent, but the doc changed the settings so that it would automatically adjust to her breathing pattern, and she seems to be doing a lot better. She still has her little attitude, but that's fine as long as she keeps fighting.
They drained another 15cc's from her brain reservoir today, but didn't drain anything from Masinja. They should both be getting the cranial ultrasounds this week, so we'll see what kind of progress they've made.
That's all for today.
Peace,
T.M.
Daily Update - 17 February 2007
Today was pretty boring. Masinja had a good day of rest. He didn't have any issues, and was just chilling out when we left him tonight.
Madelinja had a good day, too. T.M.M. got to give her a sponge bath, and hold her like I did last week. She was pretty excited, but sad, because we don't get to hold or touch them very much right now.
They're still planning on starting Masinja's feeding next week. We'll have to see how that goes. They're going to do a dye test to make sure his bowels are working properly before introducing food into his system. This will hopefully preempt any issues little man might have.
Well, that's it for tonight.
Peace,
T.M.
Madelinja had a good day, too. T.M.M. got to give her a sponge bath, and hold her like I did last week. She was pretty excited, but sad, because we don't get to hold or touch them very much right now.
They're still planning on starting Masinja's feeding next week. We'll have to see how that goes. They're going to do a dye test to make sure his bowels are working properly before introducing food into his system. This will hopefully preempt any issues little man might have.
Well, that's it for tonight.
Peace,
T.M.
Friday, February 16, 2007
Daily Update - 16 February 2007
Masinja had an ok day. He was resting peacefully, and back to his old ways of trying to lay anywhere but where the nurses put him. Very squirmy. They took 11cc's off his brain today, but got fresh blood as they were pulling it up. We're not sure what the implications of this might be, but they're scheduled to have cranial ultrasounds again next week, so we'll see if things have changed a lot.
Madelinja ended up having a blood transfusion, and they took 21cc's of fluid off her brain today. She was still showing a little attitude tonight, but not too bad. She's going to be a handful when she's gets older. I'm already picking out my shotgun, so the boys better know how to low crawl.
Well, that's all for today. Until tomorrow.
Peace,
T.M.
Madelinja ended up having a blood transfusion, and they took 21cc's of fluid off her brain today. She was still showing a little attitude tonight, but not too bad. She's going to be a handful when she's gets older. I'm already picking out my shotgun, so the boys better know how to low crawl.
Well, that's all for today. Until tomorrow.
Peace,
T.M.
Thursday, February 15, 2007
Daily Update - 15 February 2007
Today's update will be short. Masinja is status quo and boring. He had a good day and was just chilling out when we left him tonight.
Madelinja has started on some medicine that will help her generate her own red blood cells. This should keep her from having to have a lot of blood transfusions. She'll get it Monday through Friday, with Saturday and Sunday off. Other than that, she's also just chilling out.
That's all for now.
Peace,
T.M.
Madelinja has started on some medicine that will help her generate her own red blood cells. This should keep her from having to have a lot of blood transfusions. She'll get it Monday through Friday, with Saturday and Sunday off. Other than that, she's also just chilling out.
That's all for now.
Peace,
T.M.
Wednesday, February 14, 2007
Daily Update - 14 February 2007
Today was uneventful. Masinja is resting pretty peacefully. His swelling has pretty much gone completely away. T.M.M. helped give him a sponge bath tonight, so that was a good bonding experience.
Madelinja has been having a not so great day. Her temper seems to be getting the best of her, and she's enjoying making the nurses a little crazy. She's calmed down though, so hopefully tonight will be quiet for her.
Finally, they weighed in today: Madelinja was 1lb 12.6ozs, and Masinja was 2lbs 5.3ozs. Our kids are porkers!
Not much else to report. Boring is good. We like boring.
Peace,
T.M.
Madelinja has been having a not so great day. Her temper seems to be getting the best of her, and she's enjoying making the nurses a little crazy. She's calmed down though, so hopefully tonight will be quiet for her.
Finally, they weighed in today: Madelinja was 1lb 12.6ozs, and Masinja was 2lbs 5.3ozs. Our kids are porkers!
Not much else to report. Boring is good. We like boring.
Peace,
T.M.
Tuesday, February 13, 2007
Daily Update - 13 February 2007
Masinja's swelling has gone down a lot. He's almost looking normal again, which is nice. He still has some puffiness, but he should be ok in another day or two. He's still on the oscillator, and will probably be on that for a while. We'll see how his lung recovers, and that will determine if he returns to the other ventilator or not.
Madelinja is also doing fine. She's starting to really recognize our voices. She had her eyes wide open when I was talking to her, and she got upset when I left to go and talk to her brother. She was actually closing her eyes when I stopped talking, as if to go to sleep, but opened them right back up again when she heard my voice. I'm going to have to whisper a lot when we finally get them home, otherwise they'll never sleep.
As far as their brain drains, Masinja is doing better than Madelinja. They only got halfway done with his draining today and quit, because they only pull until a certain point. They're going to wait until Thursday to drain him again. They took another 17cc's off Madelinja, so that's 87cc's total in the last 4 days. It's still dark, so we'll see where it goes from here.
That's all for now. Talk at you again tomorrow.
Peace,
T.M.
Madelinja is also doing fine. She's starting to really recognize our voices. She had her eyes wide open when I was talking to her, and she got upset when I left to go and talk to her brother. She was actually closing her eyes when I stopped talking, as if to go to sleep, but opened them right back up again when she heard my voice. I'm going to have to whisper a lot when we finally get them home, otherwise they'll never sleep.
As far as their brain drains, Masinja is doing better than Madelinja. They only got halfway done with his draining today and quit, because they only pull until a certain point. They're going to wait until Thursday to drain him again. They took another 17cc's off Madelinja, so that's 87cc's total in the last 4 days. It's still dark, so we'll see where it goes from here.
That's all for now. Talk at you again tomorrow.
Peace,
T.M.
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