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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.