Tuesday, September 30, 2008
Brady Watch -- Day 2
Madeline has made it 2 days without a brady. Will she make it to day 5 without resetting the clock? We'll see. In other news, Maddy put several ounces and is now 6 lbs 15.4 ozs. Look for her to go over 7 lbs tomorrow! Maddy also passed her car seat test, so the only thing that stands between her and discharge is 5 days without a brady. Let's all keep our fingers crossed. Milo is now nippling all feeds as tolerated, and he's about an ounce or two less than Maddy right now. He had nice bath last night, which he always enjoys, and his liver test yesterday showed significant improvement. By the way, for those of you counting, the babies have been at Alta Bates for 109 days now.
Saturday, September 27, 2008
Weekend Update with Milo & Maddy
The Quick Facts for Today.
MILO
Weight: 6 lbs 9.4 ozs.
Feedings: 60 mls of breast milk every 3 hours - every other feed by nipple (breast or bottle)
Discharge date: Probably a couple weeks, but (as always) it's up to him.
Other items: Milo had a another eye exam yesterday and his retinopathy appears to be an issue that will resolve without significant complication and very likely without surgery. Milo will probably be wearing some thick glasses though -- which we all know chicks dig. He will need surgery (like almost all premature males) to correct his scrotal hernia - probably in a couple months. His liver values are improving, and his color is getting much better. He was examined by a pulmonologist yesterday, and his lungs are looking very good -- all things considered. Though, he will likely go home on diuretics. The pulmonologist says that we should not take M&M to elevations above 6000 feet this winter, but they can start snowboarding next winter.
To snip or not to snip? The Great Circumcision Debate of 2008 has commenced! Feel free to make your opinion known.
MADELINE
Weight: 6 lbs 10.8 ozs (bigger than Milo!)
Feedings: Ad lib (as much as she wants, when she wants it)
Discharge date: Brady watch -- if she can go 5 days without a bradycardia, she gets to go home.
Other items: Maddy likes to eat -- a lot! She's like Uncle Jeff U. at an all-you-can-eat sushi bar. With any luck, she's had her last surgery and major medical procedure. She will go home on some potent vitamins -- particularly iron -- in order to help her keep strong and growing.
On a serious note - The pulmonologist was pretty emphatic that we need to be hyper-vigilant about about keeping the babies from getting a colds or flu. Actually he said "Nazi-like." No grocery stores, restaurants, air planes, subways, or anywhere where there are lots of people gathered in close spaces. Definitely no day care. Everyone who touches the babies must have washed hands first -- and obviously not have a cold or flu. (Look for the 50 or bottles of Purel we'll likely have around our house :). Basically, the consequence of M&M catching even a simple cold is likely a very, very long hospital stay or worse. There's a very nasty bug out there known as RSV which, as luck would have it, is highly contagious and incredibly common that does very bad things to preemies. The babies will receive a monthly vaccine against the virus, which runs about $700 a pop (thanks TriCare!), but every germ and bug is an enemy for at least until next summer. If we seem unreasonable about this, please bear with us. That said, we definitely welcome visitors and all of our friends and family to visit and hold the babies. After all, most of you are pretty clean ;) Thanks!
MILO
Weight: 6 lbs 9.4 ozs.
Feedings: 60 mls of breast milk every 3 hours - every other feed by nipple (breast or bottle)
Discharge date: Probably a couple weeks, but (as always) it's up to him.
Other items: Milo had a another eye exam yesterday and his retinopathy appears to be an issue that will resolve without significant complication and very likely without surgery. Milo will probably be wearing some thick glasses though -- which we all know chicks dig. He will need surgery (like almost all premature males) to correct his scrotal hernia - probably in a couple months. His liver values are improving, and his color is getting much better. He was examined by a pulmonologist yesterday, and his lungs are looking very good -- all things considered. Though, he will likely go home on diuretics. The pulmonologist says that we should not take M&M to elevations above 6000 feet this winter, but they can start snowboarding next winter.
To snip or not to snip? The Great Circumcision Debate of 2008 has commenced! Feel free to make your opinion known.
MADELINE
Weight: 6 lbs 10.8 ozs (bigger than Milo!)
Feedings: Ad lib (as much as she wants, when she wants it)
Discharge date: Brady watch -- if she can go 5 days without a bradycardia, she gets to go home.
Other items: Maddy likes to eat -- a lot! She's like Uncle Jeff U. at an all-you-can-eat sushi bar. With any luck, she's had her last surgery and major medical procedure. She will go home on some potent vitamins -- particularly iron -- in order to help her keep strong and growing.
On a serious note - The pulmonologist was pretty emphatic that we need to be hyper-vigilant about about keeping the babies from getting a colds or flu. Actually he said "Nazi-like." No grocery stores, restaurants, air planes, subways, or anywhere where there are lots of people gathered in close spaces. Definitely no day care. Everyone who touches the babies must have washed hands first -- and obviously not have a cold or flu. (Look for the 50 or bottles of Purel we'll likely have around our house :). Basically, the consequence of M&M catching even a simple cold is likely a very, very long hospital stay or worse. There's a very nasty bug out there known as RSV which, as luck would have it, is highly contagious and incredibly common that does very bad things to preemies. The babies will receive a monthly vaccine against the virus, which runs about $700 a pop (thanks TriCare!), but every germ and bug is an enemy for at least until next summer. If we seem unreasonable about this, please bear with us. That said, we definitely welcome visitors and all of our friends and family to visit and hold the babies. After all, most of you are pretty clean ;) Thanks!
Chubby Maddy mugs for the camera yesterday.
Maddy expresses her opinion in advance of the first presidential debate.
Milo enjoying some time with Mom. He's got a little more of the "peanut head" effect typical to preemies. Madeline had some of the same thing, and it went away once she was able to pack on weight with her ad lib feedings.
Maddy sleeping soundly and preparing for another night of partying with the nurses.
Milo at rest and looking forward to the permanent removal of his gavage tube.Thursday, September 25, 2008
Waiting, Waiting, Waiting
Sorry it's been so long since the last post. Rob's been out of town, and I've been spending a lot more time at the hospital this week with Maddy's ad lib feedings, so we haven't been as diligent in updating the blog.
The babies are officially 40 weeks old today - term! Happy Birthday babies!
The Maddy Update
Maddy is doing pretty well on her ad lib feeding, but started having bradys with feeding again on Sunday. This is just a sign that she's using a lot of her energy to eat all her meals herself, and hopefully the bradys will slow down and go away soon. Maddy is gaining weight, which is good, though not large amounts. She did pull slightly ahead of Milo in weight this week (6 lbs, 8 oz), as she gets more food than he does now, and he is still on his diuretics. Maddy is also still taking down relatively large amounts of food. She had a 115 ml (nearly 4 oz) bottle on Monday. Unfortunately when she takes down that much, she is absolutley zonked out and often won't wake up for her 4 hour feeding window that the NICU requires. Then sometimes when she's woken to eat, she doesn't do as well and bradys a bit. Ultimately, she needs to continue to eat her food on her own, gain weight, and either stop having bradys or have them diminish to the point of being an anomoly rather than a regular occurrence. We thought perhaps she would come home this week, but now it looks like we need to shift our hopes to next week. Most of the nurses think that's pretty reasonable to hope for, so cross your fingers.
The Milo Update
Milo is doing okay, too, though he is still a little ways off from taking all his feeds by mouth. He doesn't have the strength to finish all his feeds this way every time, or do more than every other feed. He seems to like breastfeeding better than bottle feeding, due in part to the fact that he doesn't seem to like the taste of the fortifier he needs to have in his milk. (The babies went off the Prolacta study after they turned 90 days old.) He just needs a bit more time to grow and get stronger. He's weighing in at just under Maddy.
Milo's liver values are continuing to improve, and his diuretics are working to keep his lungs clear. The little guy had an eye exam yesterday for his retinopathy, which has progressed beyond the first stage to the second stage. He will have another exam today with a retinopathy specialist to determine if it is progressing any further. We're hopeful it will not progress much further, and he will not need laser surgery to stop abnormal growth and scar tissue from forming in his eye. Thankfully the area where his retinopathy is occurring is in the peripheral zone of the eye, not in the center, and laser surgery is very successful in minimizing the issues associated with the abnormal growth. The laser surgery is also done right at the NICU, so he wouldn't have to be transferred anywhere. If worse comes to worse, Milo might be nearsighted at an earlier age if his retinopathy progresses, or need some additional corrective eyewear to help his eye development while his grows. With Mom and Dad's bad eye genes and nearsightedness, the kids were probably bound to need glasses anyway, but here's hoping it doesn't go beyond that.
Milo's timeline for coming home is obviously longer than Maddy's, as he is a bit more delicate right now. It's hard to predict when it might be, as premature babies can be notoriously unpredictable. How many times have we done a blog post saying it will be so many number of weeks or days before something happens, only to correct ourselves in the next post? Basically Milo needs to do the same thing Maddy does: eat by himself, gain weight, and not have bradys. He can come home on his liver medication and diuretics, so his feeding issues are all that's left. It can be agonizingly slow at this stage, and very frustrating, but sometimes babies also turn a corner quickly and you're there before you know it. We're hoping for that!
The babies are officially 40 weeks old today - term! Happy Birthday babies!
The Maddy Update
Maddy is doing pretty well on her ad lib feeding, but started having bradys with feeding again on Sunday. This is just a sign that she's using a lot of her energy to eat all her meals herself, and hopefully the bradys will slow down and go away soon. Maddy is gaining weight, which is good, though not large amounts. She did pull slightly ahead of Milo in weight this week (6 lbs, 8 oz), as she gets more food than he does now, and he is still on his diuretics. Maddy is also still taking down relatively large amounts of food. She had a 115 ml (nearly 4 oz) bottle on Monday. Unfortunately when she takes down that much, she is absolutley zonked out and often won't wake up for her 4 hour feeding window that the NICU requires. Then sometimes when she's woken to eat, she doesn't do as well and bradys a bit. Ultimately, she needs to continue to eat her food on her own, gain weight, and either stop having bradys or have them diminish to the point of being an anomoly rather than a regular occurrence. We thought perhaps she would come home this week, but now it looks like we need to shift our hopes to next week. Most of the nurses think that's pretty reasonable to hope for, so cross your fingers.
The Milo Update
Milo is doing okay, too, though he is still a little ways off from taking all his feeds by mouth. He doesn't have the strength to finish all his feeds this way every time, or do more than every other feed. He seems to like breastfeeding better than bottle feeding, due in part to the fact that he doesn't seem to like the taste of the fortifier he needs to have in his milk. (The babies went off the Prolacta study after they turned 90 days old.) He just needs a bit more time to grow and get stronger. He's weighing in at just under Maddy.
Milo's liver values are continuing to improve, and his diuretics are working to keep his lungs clear. The little guy had an eye exam yesterday for his retinopathy, which has progressed beyond the first stage to the second stage. He will have another exam today with a retinopathy specialist to determine if it is progressing any further. We're hopeful it will not progress much further, and he will not need laser surgery to stop abnormal growth and scar tissue from forming in his eye. Thankfully the area where his retinopathy is occurring is in the peripheral zone of the eye, not in the center, and laser surgery is very successful in minimizing the issues associated with the abnormal growth. The laser surgery is also done right at the NICU, so he wouldn't have to be transferred anywhere. If worse comes to worse, Milo might be nearsighted at an earlier age if his retinopathy progresses, or need some additional corrective eyewear to help his eye development while his grows. With Mom and Dad's bad eye genes and nearsightedness, the kids were probably bound to need glasses anyway, but here's hoping it doesn't go beyond that.
Milo's timeline for coming home is obviously longer than Maddy's, as he is a bit more delicate right now. It's hard to predict when it might be, as premature babies can be notoriously unpredictable. How many times have we done a blog post saying it will be so many number of weeks or days before something happens, only to correct ourselves in the next post? Basically Milo needs to do the same thing Maddy does: eat by himself, gain weight, and not have bradys. He can come home on his liver medication and diuretics, so his feeding issues are all that's left. It can be agonizingly slow at this stage, and very frustrating, but sometimes babies also turn a corner quickly and you're there before you know it. We're hoping for that!
Saturday, September 20, 2008
A Leap and a Bound
Maddy - hose free!It seems like after several weeks of small, steady progress toward their goals, this week Milo and Maddy have suddenly sky rocketed. First there was Milo coming off his cannula on Tuesday and doing so well, and then yesterday it was Madeline's sudden and impressive progress on her feeding.
Yesterday morning, Maddy pulled out her NG tube, so her nurses decided to take her cue and try her on ad lib feedings (eating whenever she wants, as much as she wants) and taking every feed by bottle or breast. After agonizing weeks of carefully pacing Madeline with bottle and breast and helping her through bradys with each big gulp, this week the little lady finally had a few feedings with no episodes and no serious efforts to help her not get too much at once. Turns out the decision timing was just right. Madeline, who is used to having 50 or so ml every three hours, gulped down one 75 ml bottle, one 70 ml bottle, and a 20 ml bottle in one shift with no problems. Overnight she took down a 100 ml bottle in one sitting as well. I guess the girl likes to eat big! I don't know where she gets that from...
Maddy still has some eating restrictions: she has to take in at least 135 ml each shift and eat at least every four hours to ensure proper weight gain. It can take a lot of energy to go from eating half her feedings to all of them. Maddy did get a bit tired this morning and needed a little help pacing according to her nurse, but her progress is amazing nonetheless. And of course losing the feeding tube means one step closer to a wire free baby! You can finally see the little tyke's face in its natural state now.
Ultimately what all this means is that Maddy is not going to be in the NICU much longer. She needs to have a good solid 5-day stretch without any bradys, take all her feeds well, and gain weight. She may come home as early as late next week or early the following week. The babies' 40-week due date was next Friday, so that would be right on schedule. After three months, this seems so sudden, I admit I'm a little nervous! (What? Take care of a baby without round-the-clock nursing help? Can you do that?) Then, of course, I feel so happy I can hardly contain myself.
Our little Milo Camper is also doing better on his feeds. He has some heart rate slow downs with eating, but not many bradys anymore. Hopefully he isn't too far behind Maddy in the eating department. He's also been much more alert and awake the past few weeks, which has been a real treat. Guess we better get on putting the rest of their room together!
Mom with babies yesterday. Notice the less puffy Milo
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