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.
Sunday, April 29, 2007
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.
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