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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.