to a nasal canula! She's been doing really well on CPAP so this weekend they're going to switch her to a nasal canula and see how she does. This means we get to lose the hat, chin strap and big tubes on her face. We'll be able to look in and see Madi's face...and her hair. We're curious to find out if she'll have our curly hair. No CPAP will be wonderful, pray she's ready for it.
For those that know the Stone side of the family you won't be surprised since they're all lean but Madi has a low level of carnitine. Your body needs carnitine to process fat. Madi's gaining weight but not quite rounding out like she should be. It's not a huge deal as it's treated by supplementing her milk but it can take 6 months or so for her body to catch on and produce enough to stop supplements. Long and lean, wonder where she gets that?
She continues to suck on the pacifier when getting fed. Not all the time but when she wants too. Yesterday she was sticking her tongue out against the feeding tube and chewing on the pacifier, just figuring out her mouth. Sticking her tongue out and sucking the pacifier are okay but we're going to have to nix the chewing for Mama's sake. Yikes!
They're going to discontinue Madi's daily caffeine dose as she grows out of it to see if she's still relying on it to control her A's and B's. It'll take about 5 days for the caffeine to work out of her system so it shouldn't be at the same time as the switch to the nasal canula. Too many changes at once could be bad news.
Pretty much every day she proves she's Madilyn the Mighty and we like it that way.
Wednesday, September 29, 2010
Monday, September 27, 2010
first bath
Another busy weekend. First off, prayer request for Dan's Grandpa Stone who's fighting off an infection before surgery to fix a knee replacement and my Grandpa Dykstra who went unconscious Sunday morning with no known cause yet. Our families are getting their dose of hospitals!
Madi really enjoyed getting her hair washed:
The nurse asked if we wanted to watch her give the bath or do it ourselves with instruction. How many first-time parents go through the first bath with a nurse? Usually you're at home on your own so I said heck yeah I'll do it. We popped the top on her isolette, folded down the sides and gave Madi a sponge bath right there. She got swaddled in a blanket to help keep her temperature up. I uncovered just the body part I needed, washed it, rinsed it and then tucked it back in the blanket. Kept repeating that until all parts were clean. Madi did amazing being off her CPAP for the bath. The nurse kept an oxygen mask nearby and gave Madi a little boost only a couple times. When we got Madi hooked back up after the bath she was satting in the 90s. She's a tough gal I tell ya.
We also got the results of her echo from Friday. The fluid around her heart hasn't gotten worse but it's still there and the PDA that had closed is open again. They saw some echogenicity or calcium deposits as well. None of these require an intervention at this point, just more to keep an eye on and watch Madi for signs that they're bothering her. Re-treating the PDA with medicine isn't effective at this point and since Madi's not bothered by it being open we're not going to go in and close it surgically. If it's still open around her first birthday they recommend doing so.
A great big Thank You to everyone who has us in their thoughts and prayers throughout the day. As Dan said earlier today, it's easy to stay positive with all the support from friends and family. Thank you!
Saturday, September 25, 2010
catch up
I got a little lax on updates this week so we have some catching up to do.
Tuesday Madi got her 4th blood transfusion. She'd had line free arms since the 14th so in order to do the transfusion she needed a new IV line. Madi was a trooper, Mom not so much. Madi didn't wimper or cry at all. Her veins are so small it's tough to find them and after a couple tries where I could see the needle under the skin I had to sit down and support Madi from a couple feet away. Not a big fan of needles to begin with. The transfusion really perked Madi up - we have our Madi back. She's back on room oxygen levels (21% or less), her color's back, more alert and I'm sure her hematocrit's higher but I've forgotten to ask specifically. She needed a lasix to balance the influx of fluid and the first diaper after that was 21g, doing it's job!! It's so nice to have our regular Madi back, praise!
By Wednesday Madi had regained weight she lost after the last round of lasix to remove the fluid around her lungs. Over a kilo! This time it's for real. As of tonight's weigh-in she's 1055grams or 2lbs 5oz.
As you saw in the video below, Madi's discovered the pacifier. Like a lot of things, she does what she wants and if she's not in the mood for the paci then you're not going to get it in her mouth. We're learning she's getting to know the feeding schedule. She'll start to get fussy 15-20 minutes before milk time. We can calm her down with the paci until she realizes that she's sucking but her belly's not getting full. Smart little girl!
She had a follow up echocardiogram today to see what the fluid around her heart is doing. I had to refresh my memory because I didn't remember she had that. Sure enough, diary entry on 8/31 talks about pericardial effusion. Way to go Mom. This is why I write things down. Madi was in the zone during the echo, just relaxing. We'll ask the doctor tomorrow what the results showed.
Speaking of tomorrow, it's a big day. Madi is one month old tomorrow. What a month it's been. I'll reflect on that tomorrow/later today.
G'nite.
Tuesday Madi got her 4th blood transfusion. She'd had line free arms since the 14th so in order to do the transfusion she needed a new IV line. Madi was a trooper, Mom not so much. Madi didn't wimper or cry at all. Her veins are so small it's tough to find them and after a couple tries where I could see the needle under the skin I had to sit down and support Madi from a couple feet away. Not a big fan of needles to begin with. The transfusion really perked Madi up - we have our Madi back. She's back on room oxygen levels (21% or less), her color's back, more alert and I'm sure her hematocrit's higher but I've forgotten to ask specifically. She needed a lasix to balance the influx of fluid and the first diaper after that was 21g, doing it's job!! It's so nice to have our regular Madi back, praise!
By Wednesday Madi had regained weight she lost after the last round of lasix to remove the fluid around her lungs. Over a kilo! This time it's for real. As of tonight's weigh-in she's 1055grams or 2lbs 5oz.
As you saw in the video below, Madi's discovered the pacifier. Like a lot of things, she does what she wants and if she's not in the mood for the paci then you're not going to get it in her mouth. We're learning she's getting to know the feeding schedule. She'll start to get fussy 15-20 minutes before milk time. We can calm her down with the paci until she realizes that she's sucking but her belly's not getting full. Smart little girl!
She had a follow up echocardiogram today to see what the fluid around her heart is doing. I had to refresh my memory because I didn't remember she had that. Sure enough, diary entry on 8/31 talks about pericardial effusion. Way to go Mom. This is why I write things down. Madi was in the zone during the echo, just relaxing. We'll ask the doctor tomorrow what the results showed.
Speaking of tomorrow, it's a big day. Madi is one month old tomorrow. What a month it's been. I'll reflect on that tomorrow/later today.
G'nite.
Friday, September 24, 2010
drum roll please...
Madi conquered something new and I was lucky enough to catch it on camera. She only does it for a couple seconds so pay attention to her mouth about 15 seconds into the video.
Tuesday, September 21, 2010
a little speed bump
Madilyn had a little bit of a tough weekend. Saturday she was pretty agitated with no apparent cause. She must've been pretty tired from Saturday because she had several apnic/brady spells that she didn't self-recover from. The nurse had to stimulate (usually means agitate) Madi to get her breathing again. Her chest started to sound a little crackly so they ordered a chest x-ray and found fluid around her lungs. They also did a blood draw and found her hematocrit had dropped in 4 days from 35% to 29%, normal is 35-40 for preemies. The third whammy was that Madi appeared to be hanging onto some solid waste. Thus we began the adventure of trying to find what will reduce her apnic/brady spells instead of waiting to see if she grows out of them.
The hematocrit they were going to watch and see if she bounced back on her own. Solving the waste problem was easy - suppository time. To combat the fluid around her lungs Madilyn got a diuretic (lasix). Add those two together and we were anticipating some pretty hefty diapers.
Sunday night she did as expected - 20g diaper. But she also wighed 60g less. They introduced feeding her on a pump over 20 minutes to see if that helped with her sats. Fill her belly slow instead of in about 5 minutes. Our opinion was that it didn't help since Madi didn't get an empty tube to reflux into.
Monday morning's blood draw showed Madi's creatinine had creeped up to .7 but since it was less than 1 they weren't overly concerned, just another something to keep an eye on. fluid in lungs - hematocrit - sats after feedings - waste output + creatinine, our new checklist The doctor heard less fluid around the lungs so she ordered another lasix to continue the drainage. They increased her caffeine amount because Madi had gained weight since the original order. Hoping the increased caffeine would slow down the apnic spells. Madi was still getting milk from the pump and desatting after eating. Monday night they'd discontinued using the pump, yay! We felt Madi did better with an empty syringe to reflux into than getting a slow feed yet trapping the gas. Monday night she was very alert and active. She'd lost more weight, down to 2lb 1oz, but had a pretty hefty diaper again - lasix still working. We had to stop her feed because of an apnic/brady spell that required a little bit of stimulation to recover from. Madi usually does well on her stomach so we moved her to her belly, increased her oxygen to 26% and she was doing better when we left.
This morning's report was that Madi had 4 more apnic/brady spells overnight with only 2 related to feeds. Her lungs sound better than yesterday, praise! Madi's hematocrit was still 29% so they're going to give her a blood transfusion. The transfusion should immediately increase her hematocrit 5-10%.
In summary we've tried to solve the apnic problem with increased caffeine, slow feeds using a pump, eliminating the fluid around her lungs and a blood transfusion. Pretty busy three days! Our prayer is that one of these does the trick.
She's regained some color since Sunday so I'll leave you with a picture of her on the move.
The hematocrit they were going to watch and see if she bounced back on her own. Solving the waste problem was easy - suppository time. To combat the fluid around her lungs Madilyn got a diuretic (lasix). Add those two together and we were anticipating some pretty hefty diapers.
Sunday night she did as expected - 20g diaper. But she also wighed 60g less. They introduced feeding her on a pump over 20 minutes to see if that helped with her sats. Fill her belly slow instead of in about 5 minutes. Our opinion was that it didn't help since Madi didn't get an empty tube to reflux into.
Monday morning's blood draw showed Madi's creatinine had creeped up to .7 but since it was less than 1 they weren't overly concerned, just another something to keep an eye on. fluid in lungs - hematocrit - sats after feedings - waste output + creatinine, our new checklist The doctor heard less fluid around the lungs so she ordered another lasix to continue the drainage. They increased her caffeine amount because Madi had gained weight since the original order. Hoping the increased caffeine would slow down the apnic spells. Madi was still getting milk from the pump and desatting after eating. Monday night they'd discontinued using the pump, yay! We felt Madi did better with an empty syringe to reflux into than getting a slow feed yet trapping the gas. Monday night she was very alert and active. She'd lost more weight, down to 2lb 1oz, but had a pretty hefty diaper again - lasix still working. We had to stop her feed because of an apnic/brady spell that required a little bit of stimulation to recover from. Madi usually does well on her stomach so we moved her to her belly, increased her oxygen to 26% and she was doing better when we left.
This morning's report was that Madi had 4 more apnic/brady spells overnight with only 2 related to feeds. Her lungs sound better than yesterday, praise! Madi's hematocrit was still 29% so they're going to give her a blood transfusion. The transfusion should immediately increase her hematocrit 5-10%.
In summary we've tried to solve the apnic problem with increased caffeine, slow feeds using a pump, eliminating the fluid around her lungs and a blood transfusion. Pretty busy three days! Our prayer is that one of these does the trick.
She's regained some color since Sunday so I'll leave you with a picture of her on the move.
Sunday, September 19, 2010
One kilo!
Last night during weigh-in Madilyn was up to 2lb 4oz which puts her over 1kilo. We were excited about 2lbs but the docs and nurses are excited about 1kilo. So we celebrate!!
She was a little agitated last night but we like to think it's because she missed us. Other than that, all's well.
Eat, sleep, breathe...and repeat.
She was a little agitated last night but we like to think it's because she missed us. Other than that, all's well.
Eat, sleep, breathe...and repeat.
Friday, September 17, 2010
September 16
A couple apnic and brady spells overnight, most were self-recovery. Madilyn's still figuring out how to regulate her heart rate and oxygen levels. If she was still tucked away, my body would regulate her oxygen and heart so it's understandable for these stats to vary. Not that we don't race to the incubator, hands ready to intervene if she doesn't bring them back up on her own but she's expected to have these moments. Madilyn had two more bradys when I was here but one was after lunch so I don't count that one since we know she struggles after eating.
Got an update from her recent blood work, creatinine is at .6 - yay!! If you aren't aware we started at 1.6 and normal is .5. Madi's high creatinine level indicated some malfunction of her kidneys. An ultrasound found she had hydronephrosis which is common in preemies who've received indocin (to close the blood vessel outside her heart). Good news is that as the medicine works it way out of her system her kidney function improves - no intervention needed!!
I plan to add a definitions page to the blog to help with all these medical terms but until then I've found www.medicinenet.com to be a great resource.
Tonight's visit Madi had the closest thing to a pout we've seen. It was quite cute but man, Dad and I are in trouble. We're going to bite the insides of our cheeks a lot with this gal.
They added an arm to her incubator so they can hang her milk syringe really low. The lower it hangs the slower Madi gets fed. Madi did much better keeping her oxygen level up so hopefully we've found the answer to reflux.
stats for today: 2lb 1 oz, 20cm waist, 17gram diaper (must be why her waist shrunk)
Got an update from her recent blood work, creatinine is at .6 - yay!! If you aren't aware we started at 1.6 and normal is .5. Madi's high creatinine level indicated some malfunction of her kidneys. An ultrasound found she had hydronephrosis which is common in preemies who've received indocin (to close the blood vessel outside her heart). Good news is that as the medicine works it way out of her system her kidney function improves - no intervention needed!!
I plan to add a definitions page to the blog to help with all these medical terms but until then I've found www.medicinenet.com to be a great resource.
Tonight's visit Madi had the closest thing to a pout we've seen. It was quite cute but man, Dad and I are in trouble. We're going to bite the insides of our cheeks a lot with this gal.
They added an arm to her incubator so they can hang her milk syringe really low. The lower it hangs the slower Madi gets fed. Madi did much better keeping her oxygen level up so hopefully we've found the answer to reflux.
stats for today: 2lb 1 oz, 20cm waist, 17gram diaper (must be why her waist shrunk)
Thursday, September 16, 2010
Madi’s first modeling gig
St. V Women's wants to update publications and their website with pictures from the NICU and their babies and had asked if we'd be willing to participate. They wanted us for kangaroo care and since it involved getting to hold Madilyn I said "heck yeah." Madi snuggled in right away and true to form, kept one arm free to move about. The photographer was pleased with her "Aww, how cute" move and zoomed in on that hand several times. I didn't see any of the pictures yet but I'm sure she continued to own the camera. Too bad this session only comes with fame, no fortune.
After pictures were done I continued to kangaroo with Madi for almost 2.5 hours. It was tough for Mom to stay awake as it's so comfortable to hold her. Madilyn's temperature didn't drop during the kangaroo which is good - some self regulation is there. She had some ups and downs after her 9am meal but more on that in the paragraph below.
Madi was up and down on her oxygen sats again today. This is common and will continue as she figures out how to breathe effectively. It seems the variation is greater after eating so they're watching her alarms to confirm and if it is then that could indicate reflux. Simply slowing down how fast she receives milk could solve that problem. I'll keep you posted about any changes.
Stats for today: 2lb 1 oz, 21cm waist, 6gram diaper and 24-27% oxygen
After pictures were done I continued to kangaroo with Madi for almost 2.5 hours. It was tough for Mom to stay awake as it's so comfortable to hold her. Madilyn's temperature didn't drop during the kangaroo which is good - some self regulation is there. She had some ups and downs after her 9am meal but more on that in the paragraph below.
Madi was up and down on her oxygen sats again today. This is common and will continue as she figures out how to breathe effectively. It seems the variation is greater after eating so they're watching her alarms to confirm and if it is then that could indicate reflux. Simply slowing down how fast she receives milk could solve that problem. I'll keep you posted about any changes.
Stats for today: 2lb 1 oz, 21cm waist, 6gram diaper and 24-27% oxygen
Wednesday, September 15, 2010
First entry
I'm going to try my hand at blogging. It seems everyone's doing it and that rationale worked well for me in high school so why not?/! Here goes nothin'...
Subscribe to:
Posts (Atom)