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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.