Both Hazel and Jude had great days today. They were both on lower oxygen settings than we've seen them in a long time (or ever!). Hazel was on "room air" almost all day with the lowest flow possible. Next step, no oxygen which equals no tape on her face! My goal for her is next Tuesday. We'll see what her goal is and what the doctors think.
Jude had his flow lowered again today to 4 and was not requiring anymore oxygen than he was when he was at 4.5 liters. That's great! Usually, as the flow is lowered, the O2 goes up for a bit. Then the O2 gets lowered, the flow gets lowered again, and the cycle continues. Jude's schedule and the OT's schedule don't seem to be matching up. The OT stops by frequently, but Jude is either sleeping or agitated. We'll try again tomorrow. She wants to work on oral stimulation with him as his feeding begins. We gave him a pep talk tonight and told him that he needs to be awake and content at 11:15 tomorrow. I hope he listens!
As for the picture in the previous post, we should really compare Hazel's 5 month picture to my 2 month picture due to her being 3 months premature, but we thought there was already a great resemblance.
Wednesday, January 12, 2011
Tuesday, January 11, 2011
Hazel Slide Show
Hazel was pretty awake tonight when we were there, so we snapped a bunch of photos. When we were on our way home, Heidi and I both said that Hazel seemed "like a normal baby" tonight, which was really neat for us. Enjoy!
Immunizations already?
Since our babies are technically 2 months old, they are receiving their 2 month immunizations today and tomorrow. They got 2 today and will get 3 tomorrow. Poor babies. They aren't even full-term yet!
Hazel is a bit congested now, but is thankfully not sick. Between that and her edema, she has not been able to make much progress on her breathing. The doctor thought she'd be able to be completely weaned this week, but it's not looking like that now since she is taking much shallower breaths than before. On a good note, she may be able to try breastfeeding sometime this week! Oh, another good note, the weekend doctor increased her diuretic and gave her an additional medication for her edema and she lost almost 5 ounces 2 nights ago. Too bad she can't give it to her brother!
Here's Jude enjoying sucking on my finger. He tends to like that better than the pacifier and we like to give him all the practice he can get! The doctor thought his weight gain this past week was much better, but I don't know what the exact total was. He was able to be weaned from a 5 liter flow on his oxygen to 4.5 liters. It's a very small difference, but a move in the right direction. We're praying he can get weaned a liter a week. It's asking a lot, but we think he can do it! His billirubin is still high, which is a sign of liver dysfunction. The doctor is quite sure it's just a result of the extended time he was on the IV and will work itself out, but she's consulting a GI doctor anyway just to make sure there's nothing else going on. The GI will see Jude later this week.
We continue to pray for progress in their breathing, their suck/swallow/breathe ability, Hazel's edema, Jude's brain bleed, both of their livers, protection from infection, overall development, and good health, patience and hope for ourselves.
Hazel is a bit congested now, but is thankfully not sick. Between that and her edema, she has not been able to make much progress on her breathing. The doctor thought she'd be able to be completely weaned this week, but it's not looking like that now since she is taking much shallower breaths than before. On a good note, she may be able to try breastfeeding sometime this week! Oh, another good note, the weekend doctor increased her diuretic and gave her an additional medication for her edema and she lost almost 5 ounces 2 nights ago. Too bad she can't give it to her brother!
Here's Jude enjoying sucking on my finger. He tends to like that better than the pacifier and we like to give him all the practice he can get! The doctor thought his weight gain this past week was much better, but I don't know what the exact total was. He was able to be weaned from a 5 liter flow on his oxygen to 4.5 liters. It's a very small difference, but a move in the right direction. We're praying he can get weaned a liter a week. It's asking a lot, but we think he can do it! His billirubin is still high, which is a sign of liver dysfunction. The doctor is quite sure it's just a result of the extended time he was on the IV and will work itself out, but she's consulting a GI doctor anyway just to make sure there's nothing else going on. The GI will see Jude later this week.
We continue to pray for progress in their breathing, their suck/swallow/breathe ability, Hazel's edema, Jude's brain bleed, both of their livers, protection from infection, overall development, and good health, patience and hope for ourselves.
Sunday, January 9, 2011
Pace yourself, Hazel
Hazel loves the bottle too much and is not remembering to breathe. She's got a very strong suck, but that's not good if she's not breathing! Last night, she gulped way too much way too fast, choked, bradied, and turned almost blue. I know this is common with preemies, but it sure doesn't make it easy to see! Today, the nurse just turned up her oxygen when she fed her. That went well, but it doesn't teach Hazel how to pace. It may be a long few weeks to see this get worked out. Oh, and her edema is REALLY bad now. :(
Jude had some major apnea today that resulted in some huge desaturations. His caffiene dose was increased, so hopefully that helps. He got moved to the back corner of Nursery B, which should be a quieter place than he was in earlier. We're hoping this helps him since he's so sensative to sound.
On a brighter note, my friend Amanda came and visited today! She lives in Toronto where her husband John is a student, but she's working in LA for awhile. She cleaned and grocery shopped for us, which was SO helpful. We're so grateful for great friends and great support from so many people. And it's always fun to introduce our kids to our friends!
Jude had some major apnea today that resulted in some huge desaturations. His caffiene dose was increased, so hopefully that helps. He got moved to the back corner of Nursery B, which should be a quieter place than he was in earlier. We're hoping this helps him since he's so sensative to sound.
On a brighter note, my friend Amanda came and visited today! She lives in Toronto where her husband John is a student, but she's working in LA for awhile. She cleaned and grocery shopped for us, which was SO helpful. We're so grateful for great friends and great support from so many people. And it's always fun to introduce our kids to our friends!
Saturday, January 8, 2011
We knew it would happen
Well, we knew it was coming, but it doesn't make it easy. More babies were admitted a couple days ago, Nursery C was opened up, and Hazel got moved. There's a good chance she'll go home before Jude even makes it there, which means we might not be together again as a family for a couple of months. I know it's a good thing for Hazel, but it's SO much nicer to have them next to each other!
Hazel is still doing well with the bottle with the small amount. We're eager for her to be ready to take more at a time! We're very thankful that she has got the suck, swallow, breathe thing down decently well.
Jude is having a really tough time with gagging. The combination of his feeding tube and the high flow of oxygen he's receiving is suddenly causing him to gag a lot. If we pick him up, or he gets turned over, he gags and then bradys (heart rate drops low) and majorly desaturates (oxygen level drops low). Hazel's feeding tube is in her nose, which helps the gagging issue, but Jude's oxygen requirement is still too high for that to be an option for him. It's very frustrating because we haven't held him in a couple of days (we've tried, but this keeps happening and we have to put him back right away) and he just seems really uncomfortable. I would also if I had a tube down my throat and lots of air being blown into my nose (with a few occasional water drops, which don't help anything)! I wish his oxygen requirement could go down significantly, but it's a very slow process. If he required less air flow, he could get his tube moved and/or try a bottle. We're just waiting, but it sure is hard.
Hazel is still doing well with the bottle with the small amount. We're eager for her to be ready to take more at a time! We're very thankful that she has got the suck, swallow, breathe thing down decently well.
Jude is having a really tough time with gagging. The combination of his feeding tube and the high flow of oxygen he's receiving is suddenly causing him to gag a lot. If we pick him up, or he gets turned over, he gags and then bradys (heart rate drops low) and majorly desaturates (oxygen level drops low). Hazel's feeding tube is in her nose, which helps the gagging issue, but Jude's oxygen requirement is still too high for that to be an option for him. It's very frustrating because we haven't held him in a couple of days (we've tried, but this keeps happening and we have to put him back right away) and he just seems really uncomfortable. I would also if I had a tube down my throat and lots of air being blown into my nose (with a few occasional water drops, which don't help anything)! I wish his oxygen requirement could go down significantly, but it's a very slow process. If he required less air flow, he could get his tube moved and/or try a bottle. We're just waiting, but it sure is hard.
Friday, January 7, 2011
Hazel loved the bottle!
Hazel got to try a little milk from a bottle today and did great! She didn't cough, choke, gag, or spit up. She took 13 ccs and then the OT decided to stop since that was a great start. We don't want to push her too much due to her history of vomiting and she isn't used to getting a lot of milk all at once. The doctor wrote an order for her to try a bottle twice a day with up to 20 ccs. She'll then receive the rest of her food (she gets 65 ccs total) through her tube over 2 hours. Yay Hazel!
Jude told the OT, "I don't want to play today", which was a bit disappointing. He was really up and down today with his breathing. Hopefully he's a bit more stable next time we visit (and the next time the OT visits him).
Jude told the OT, "I don't want to play today", which was a bit disappointing. He was really up and down today with his breathing. Hopefully he's a bit more stable next time we visit (and the next time the OT visits him).
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