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3 days ago
4.30.2008
Working on Feeding
We are just working hard with feeding, since this is the main thing keeping us here. She lost just a little weight from yesterday (6 grams). So that's hardly worth mentioning. Ideally we want her to gain each day, but they look at her weight gain overall since birth and on a weekly basis, so a small loss from day to day doesn't mean too much.
She had another bottle last night and took 40cc - good girl! I've been having problems trying to breastfeed ad lib and still stick to her every 3 hour feeding schedule with the supplements. It gets confusing and then we end up feeding or pumping almost nonstop all day. So we've come up with a new plan about half way through the day that we are trying out today and we'll see how she does with it. If it's not working out, or she loses a bunch of weight tonight, we'll need to reevaluate tomorrow. But for now, she is strictly breastfeeding on demand all day while I'm here. No added supplements through the NG or by bottle unless I feel like she's not getting enough. Then while we are gone at night, she'll get her feeds every 3 hours by bottle if she's awake or by NG if she's asleep. If she doesn't take her whole feed (75cc) by bottle, which she never has been able to do yet, then she'll get whatever she doesn't take by bottle, through the NG.
Each of her breastfeedings today have only been about 5 minutes in length, so I felt like she wasn't getting enough and I gave her her last feeding of breastmilk by bottle. She took about an ounce and then went to sleep.
She's had a lot of activity today and is really worn out this afternoon, so I hope she's getting a good nap and will eat well for me this evening. She had occupational therapy (OT) this morning and her therapist said that considering all she's been through, she does very well. The only thing she doesn't do that she should be doing at this point, is hold her head up. She is just weak from not having to do this, so we are working on that as well as some other things that all normal babies work on, like tummy time and practicing rolling over. She showed me some exercises to do with her 3 times per day that we'll continue when we go home and gave me some info to read about developmental milestones. With a little work, she'll be right on track. These are also things we'll work on with our regular pediatrician after we're discharged.
She is still on the nasal cannula. We trialed her off again last evening and she just went about 10 minutes, before she needed it back on. She just needs a little more time. Plus we don't want her working too hard to breathe and burning off all those much needed calories!
Today was also a scheduled weaning day for her ativan and methadone, so her doses are now to to 0.12 mg. She really doesn't seem to be having any withdrawal symptoms, which is great!
Tomorrow morning she will have some lab work done to look at her liver enzymes again and compare them to where they were on Monday. Hopefully this is stabilizing now that she's on the Actigall.
Sofia had a special visit today from her Great Grandpa Tucker and her wild and crazy friends, Wanda & Ernie. Wanda was her honorary Great Grandma today and brought her a handmade KU quilt. Sofie says she will love this for tailgaiting! Great Grandpa Tucker hadn't seen her since right after she went on ECMO, and she was awake and playful when he was here today. What a difference a few weeks has made!
Sofie's Mommy
She had another bottle last night and took 40cc - good girl! I've been having problems trying to breastfeed ad lib and still stick to her every 3 hour feeding schedule with the supplements. It gets confusing and then we end up feeding or pumping almost nonstop all day. So we've come up with a new plan about half way through the day that we are trying out today and we'll see how she does with it. If it's not working out, or she loses a bunch of weight tonight, we'll need to reevaluate tomorrow. But for now, she is strictly breastfeeding on demand all day while I'm here. No added supplements through the NG or by bottle unless I feel like she's not getting enough. Then while we are gone at night, she'll get her feeds every 3 hours by bottle if she's awake or by NG if she's asleep. If she doesn't take her whole feed (75cc) by bottle, which she never has been able to do yet, then she'll get whatever she doesn't take by bottle, through the NG.
Each of her breastfeedings today have only been about 5 minutes in length, so I felt like she wasn't getting enough and I gave her her last feeding of breastmilk by bottle. She took about an ounce and then went to sleep.
She's had a lot of activity today and is really worn out this afternoon, so I hope she's getting a good nap and will eat well for me this evening. She had occupational therapy (OT) this morning and her therapist said that considering all she's been through, she does very well. The only thing she doesn't do that she should be doing at this point, is hold her head up. She is just weak from not having to do this, so we are working on that as well as some other things that all normal babies work on, like tummy time and practicing rolling over. She showed me some exercises to do with her 3 times per day that we'll continue when we go home and gave me some info to read about developmental milestones. With a little work, she'll be right on track. These are also things we'll work on with our regular pediatrician after we're discharged.
She is still on the nasal cannula. We trialed her off again last evening and she just went about 10 minutes, before she needed it back on. She just needs a little more time. Plus we don't want her working too hard to breathe and burning off all those much needed calories!
Today was also a scheduled weaning day for her ativan and methadone, so her doses are now to to 0.12 mg. She really doesn't seem to be having any withdrawal symptoms, which is great!
Tomorrow morning she will have some lab work done to look at her liver enzymes again and compare them to where they were on Monday. Hopefully this is stabilizing now that she's on the Actigall.
Sofia had a special visit today from her Great Grandpa Tucker and her wild and crazy friends, Wanda & Ernie. Wanda was her honorary Great Grandma today and brought her a handmade KU quilt. Sofie says she will love this for tailgaiting! Great Grandpa Tucker hadn't seen her since right after she went on ECMO, and she was awake and playful when he was here today. What a difference a few weeks has made!
Sofie's Mommy
4.29.2008
Trialed off Oxygen
Sofie trialed off the nasal cannula this afternoon and only made it about 15 minutes before going back on. But she always has been on Sofie Time - there's no rushing her until she's ready. She was also eating at the time, so that made it especially hard for her to keep up with her breathing. We plan to try again later this afternoon or this evening when she is sleeping to see if she does a little better.
She breastfed a little better this morning, but we still have a ways to go before she will really be effective at it. She is trying hard and making big strides. Her nurse, Alicia, fed her her first bottle last night at the 3:00 am feed. She did pretty well for her first attempt and took around 25cc I think. Daddy got to try the 2nd bottle at the 3:00 feed this afternoon and she took 48cc! Way to go Sofie!
We asked her doctor in rounds this morning when he thinks she might be able to come home. He said probably a minimum of 2 more weeks. She has to get a lot better with feeding and they want her off the methadone and ativan (although I think they might reconsider that if we asked them to.) They think she'll have no problem coming off the oxygen sometime this week, so really feeding is our main issue to tackle before we get to go home. Still, we've come so far and 2 more weeks is nothing compared to what we've been through. When I think back to where we were just a little more than a month ago - still on ECMO - I would have given anything for our main problem to be feeding.
Just another quick note and I have to get back to my little sweetie peetie, no occupational/physical therapy yet. They weren't able to see her yesterday or today. Hopefully tomorrow, I'm anxious to get going on this!! Also no hearing screen today. Again - hopefully tomorrow! Her abdominal ultrasound was done yesterday to look at her liver, bile ducts, gallbladder, kidneys, and spleen. All was normal!! They worried she may have a bile duct obstruction that could have caused her increasing jaundice - a serious condition. Thankfully that is not the case, her liver is just irritated from the long term TPN as they originally thought. She is taking the Actigall now to help with that and will be on it for quite a while. Maybe a month?
Sofie's Mommy
She breastfed a little better this morning, but we still have a ways to go before she will really be effective at it. She is trying hard and making big strides. Her nurse, Alicia, fed her her first bottle last night at the 3:00 am feed. She did pretty well for her first attempt and took around 25cc I think. Daddy got to try the 2nd bottle at the 3:00 feed this afternoon and she took 48cc! Way to go Sofie!
We asked her doctor in rounds this morning when he thinks she might be able to come home. He said probably a minimum of 2 more weeks. She has to get a lot better with feeding and they want her off the methadone and ativan (although I think they might reconsider that if we asked them to.) They think she'll have no problem coming off the oxygen sometime this week, so really feeding is our main issue to tackle before we get to go home. Still, we've come so far and 2 more weeks is nothing compared to what we've been through. When I think back to where we were just a little more than a month ago - still on ECMO - I would have given anything for our main problem to be feeding.
Just another quick note and I have to get back to my little sweetie peetie, no occupational/physical therapy yet. They weren't able to see her yesterday or today. Hopefully tomorrow, I'm anxious to get going on this!! Also no hearing screen today. Again - hopefully tomorrow! Her abdominal ultrasound was done yesterday to look at her liver, bile ducts, gallbladder, kidneys, and spleen. All was normal!! They worried she may have a bile duct obstruction that could have caused her increasing jaundice - a serious condition. Thankfully that is not the case, her liver is just irritated from the long term TPN as they originally thought. She is taking the Actigall now to help with that and will be on it for quite a while. Maybe a month?
Sofie's Mommy
4.28.2008
Busy Day
When we came in this morning, Sofie was down to 40% oxygen at 0.1 L. They wanted to trial her off oxygen today, but her sats were hanging a little lower than yesterday, mostly in the upper 80's, so we felt she may not be quite ready today. They decided to go ahead and wait until tomorrow to trial her off and just let her settle a bit at the lower setting today.
After working with the lactation consultant at the 11:00 am feeding, we also decided the reason she didn't breastfeed well the last few feedings may be because she needed a little more oxygen. We turned her up to 75% during the feeding and she did a little better. This makes a lot of sense because her two really good feedings yesterday were in the morning, before they started turning her oxygen way down. And once she was on the really low settings of oxygen, she didn't breastfeed at all. She was really fussy and seemed very uncomfortable. I could tell she was really hungry and wanted to eat, but she just seemed really irritable and frustrated. I think she was just smart enough to know she needed to breathe more than she needed to eat! So hopefully now that we have this figured out, the 2:00 feeding will go a little better so we can get back on track.
They weaned her methadone and ativan another 0.02 mg today, so her doses are now at 0.14 mg. They also spaced out the number of doses per day to every 12 hours for both of them, so they will alternate giving one or the other every 6 hours now instead of every 4 hours. She's doing great with her withdrawals with very little or no symptoms at all.
Her liver enzymes are still a bit high this week (they are checking every Monday), so they are starting her on a new drug called Actigall. It's to help her liver recover, since it's a bit irritated after getting TPN for so long. She's also getting an ultrasound of her liver right now.
No mention of PT or OT today, so I asked about it, and they will write the order this afternoon sometime.
She will also be getting her hearing screen either today or tomorrow. I know they do this closer to discharge, so it must be a good sign!
Sofie's Mommy
After working with the lactation consultant at the 11:00 am feeding, we also decided the reason she didn't breastfeed well the last few feedings may be because she needed a little more oxygen. We turned her up to 75% during the feeding and she did a little better. This makes a lot of sense because her two really good feedings yesterday were in the morning, before they started turning her oxygen way down. And once she was on the really low settings of oxygen, she didn't breastfeed at all. She was really fussy and seemed very uncomfortable. I could tell she was really hungry and wanted to eat, but she just seemed really irritable and frustrated. I think she was just smart enough to know she needed to breathe more than she needed to eat! So hopefully now that we have this figured out, the 2:00 feeding will go a little better so we can get back on track.
They weaned her methadone and ativan another 0.02 mg today, so her doses are now at 0.14 mg. They also spaced out the number of doses per day to every 12 hours for both of them, so they will alternate giving one or the other every 6 hours now instead of every 4 hours. She's doing great with her withdrawals with very little or no symptoms at all.
Her liver enzymes are still a bit high this week (they are checking every Monday), so they are starting her on a new drug called Actigall. It's to help her liver recover, since it's a bit irritated after getting TPN for so long. She's also getting an ultrasound of her liver right now.
No mention of PT or OT today, so I asked about it, and they will write the order this afternoon sometime.
She will also be getting her hearing screen either today or tomorrow. I know they do this closer to discharge, so it must be a good sign!
Sofie's Mommy
4.27.2008
Weaning the Oxygen
Great news - they weaned Sofie's oxygen a lot today and she's tolerating it really well. She started the day at about 28% oxygen at 1 L/min. They turned her up to 100% and started weaning the flow and within a couple of hours, she was already down to 0.1 L/min at 90%. Right now she's at about 60% at 0.1 L and doing great! Hopefully she'll be completely off the supplemental oxygen in a couple of days.
The feeding is going pretty well. We were 2 for 4 on feeding attempts today. They wrote the order this morning in rounds for her to breastfeed as many times as she wants, so while I'm here during the day, we try every time she is awake and looking like she's ready to eat. She did really well for 2 of the times and only needed half her supplement by NG. The other 2 times she was really fussy, but she is still learning and getting better every day.
She's definitely moving things through just fine now. No problem in that department. She's left a nice little surprise in Daddy's hand twice now when he was changing her. (I think she does this on purpose!) And we are going through the outfits since diapers are no match for her, um, digestive abilites now.
Good Morning Sofie! Snug as a bug. This was the 1st of 3 outfits today (blowout casualties).
Outfit #2 - Hey I figured Mommy & Daddy are always taking pictures, I should be getting something out of all this cuteness...
Ah, my first paying customer. I'm pretty sure I could take this guy for more than 50 cents, but I'll let him off easy this time.
I rock! I don't need no stinking oxygen!
Outfit #3....still hangin' on...
4.26.2008
Learning to Eat
"Hey Sugarbear, what's going on?"
"Guess what! I learned to eat today!"
"It must have been these awesome socks Mike & Steven brought me."
"Check em' out!"Busy Weekend
Sofia's having a great weekend. She's getting to be held and cuddled by new people and is loving it! Grandma Cheryl and Aunt Aimee held her yesterday and Grandma and Grandpa Troxel held her for a while today. Grandpa Kenny is coming this week for some quality Sofie time too. I'll be posting pictures later! She is really loving all the attention.
She is doing great on her narcotic weaning. Her methadone and ativan are being weaned by 0.02mg every other day. She's getting 0.14mg doses of each today, and they alternate every 4 hours. She is having very few withdrawal symptoms. Mostly just sneezing, hiccups, and frequent yawning. But other than that, she's not been jittery or very irritable at all. At least not any more than a normal baby would be each day!
Her feedings are still at 70cc given over 1 hour. She eats every 3 hours and is still getting all her food by the NG tube. We get to try breastfeeding once a day and it will take her a while to get the hang of it. She's not used to having to eat when she's hungry - the food has just always appeared in her tummy before! Once she is a little stronger, she'll do great with breastfeeding I think. It's just going to take some time. I asked in rounds this morning if we could try more than once a day, and they said that would be okay, so now we get to try 2-3 times per day if she's up to it. She's digesting everything really well and has kept everything down for several days, since her withdrawal symptoms have been better. CDH babies often have pretty bad reflux, and so far this hasn't been a problem for her at all.
They left her oxygen at 1 L again today, with her oxygen concentration between 26-32%, and she's doing great with it. Occasionally when she's mad, she'll desat to the low 80's to upper 70's, but she quickly recovers. Most of the time, she sats upper 90's-100%. These are really low settings, so before long she won't need any extra oxygen at all!
A few side notes: the pressure sore on the back of her head is healing nicely and they discontinued the antibiotic ointment for that today. Now that she is happier, and more alert and active, I asked when we can start doing physical therapy with her. Since she was so heavily sedated for so long on ECMO and on the ventilators, she hasn't been able to move around much like a normal baby does. Her head is still pretty molded (misshapen) because she's been laying down for so long. And she doesn't hold her head up yet. This is just because she hasn't had to use those muscles, so they're really weak. A physical therapist and occupational therapist will work with her on these things starting on Monday. So I'm excited to learn some new things that we can do to help her with this, and it will be like play time for her.
Sofie's Mommy
She is doing great on her narcotic weaning. Her methadone and ativan are being weaned by 0.02mg every other day. She's getting 0.14mg doses of each today, and they alternate every 4 hours. She is having very few withdrawal symptoms. Mostly just sneezing, hiccups, and frequent yawning. But other than that, she's not been jittery or very irritable at all. At least not any more than a normal baby would be each day!
Her feedings are still at 70cc given over 1 hour. She eats every 3 hours and is still getting all her food by the NG tube. We get to try breastfeeding once a day and it will take her a while to get the hang of it. She's not used to having to eat when she's hungry - the food has just always appeared in her tummy before! Once she is a little stronger, she'll do great with breastfeeding I think. It's just going to take some time. I asked in rounds this morning if we could try more than once a day, and they said that would be okay, so now we get to try 2-3 times per day if she's up to it. She's digesting everything really well and has kept everything down for several days, since her withdrawal symptoms have been better. CDH babies often have pretty bad reflux, and so far this hasn't been a problem for her at all.
They left her oxygen at 1 L again today, with her oxygen concentration between 26-32%, and she's doing great with it. Occasionally when she's mad, she'll desat to the low 80's to upper 70's, but she quickly recovers. Most of the time, she sats upper 90's-100%. These are really low settings, so before long she won't need any extra oxygen at all!
A few side notes: the pressure sore on the back of her head is healing nicely and they discontinued the antibiotic ointment for that today. Now that she is happier, and more alert and active, I asked when we can start doing physical therapy with her. Since she was so heavily sedated for so long on ECMO and on the ventilators, she hasn't been able to move around much like a normal baby does. Her head is still pretty molded (misshapen) because she's been laying down for so long. And she doesn't hold her head up yet. This is just because she hasn't had to use those muscles, so they're really weak. A physical therapist and occupational therapist will work with her on these things starting on Monday. So I'm excited to learn some new things that we can do to help her with this, and it will be like play time for her.
Sofie's Mommy
4.25.2008
Just hanging out
Sorry for the lack of posts the last couple days. Sofie is doing so good that we just spend our time playing her. She really loves her mobile. She will just follow it with her big eyes and try to swing her arms at it, but they aren't quite long enough to reach. Now that she doesn't have so many things attached we are pretty much free to take her out of bed and hold her whenever we want. So we spend a lot of time rocking in our squeaky chair and just hanging out.
The doctors have compressed her feeds over the last couple days. She is now getting her full feedings over 1 hour and she is tolerating it very well. She is even starting to figure out when it is time to eat. She will get a little cranky right before her scheduled feeding times because she is hungry, but so does Dad so I can't blame her.
They are weaning the flow on her oxygen again today. So she will be down to a flow of 1 liter per minute at around 30%. She will still occasionally desat when she gets upset but gets them right back up.
She began weaning off her Methadone and Ativan yesterday. They decreased the amount she is getting in every dose by .02 milligrams. So she is down to getting .18 milligrams of each and she didn't seem any crankier because of it. It doesn't sound like much but we are taking baby steps towards being drug free.
So that is about it. We are in the homestretch now. Getting closer everyday to going home.
Sofie's Dad
The doctors have compressed her feeds over the last couple days. She is now getting her full feedings over 1 hour and she is tolerating it very well. She is even starting to figure out when it is time to eat. She will get a little cranky right before her scheduled feeding times because she is hungry, but so does Dad so I can't blame her.
They are weaning the flow on her oxygen again today. So she will be down to a flow of 1 liter per minute at around 30%. She will still occasionally desat when she gets upset but gets them right back up.
She began weaning off her Methadone and Ativan yesterday. They decreased the amount she is getting in every dose by .02 milligrams. So she is down to getting .18 milligrams of each and she didn't seem any crankier because of it. It doesn't sound like much but we are taking baby steps towards being drug free.
So that is about it. We are in the homestretch now. Getting closer everyday to going home.
Sofie's Dad
4.22.2008
Another Good Day!
Sofia had another good day today. She is tolerating her feeds really well and is still keeping everything down, so they increased her feeds a little more today and we got to try to breastfeed one time this afternoon. It will take a while for us to get the hang of it, but at least she tried! We can try once a day now as long as she's up for it. Unfortunately, right as we're starting to learn to breastfeed, I have to return to work. My first day back is tomorrow, and I'm really not ready to go, but I don't think any mom is ever really ready to leave her baby to go back to work.
She is doing much better with her withdrawal symptoms and will start her weaning schedule on the methadone and ativan on Thursday.
Her nasal cannula settings stayed the same today, and she is continuing to do well with her breathing issues.
As of last night, she weighs just over 8 1/2 lbs. Hopefully she'll continue to do well with her feedings and start to gain some weight soon.
Sofia's Mommy
She is doing much better with her withdrawal symptoms and will start her weaning schedule on the methadone and ativan on Thursday.
Her nasal cannula settings stayed the same today, and she is continuing to do well with her breathing issues.
As of last night, she weighs just over 8 1/2 lbs. Hopefully she'll continue to do well with her feedings and start to gain some weight soon.
Sofia's Mommy
4.21.2008
IV Free!
Sofia's tolerating her feeds really well so far and has kept everything down. They've increased her feeding now to 65cc over 2 1/2 hours. She slept most of the day and was only fussy a couple of times. She still hasn't needed any prns today of morphine/versed. I'm also happy to say her PICC line is out, so she's officially IV free! Tomorrow we may get to breastfeed for the first time if she's feeling up to it. She's making giant steps toward coming home. Sofia and Kenny worked hard to decorate her bedside for my birthday and surprised me this morning. Kenny had the night shift from last night and our nurse Corey in on it too. What a sweet surprise! Thought I'd share some pics of our birthday celebration today.
Rockstar Sofie
Sofia is such a little rockstar, she is getting her first compressed feeding right now. She got up to full feeds on continuous, so they switched to compressed feeds today. She's getting 60cc over 2 1/2 hours. If she tolerates a few compressed feeds and keeps her respiratory rate down to less than 70 breaths per minute, she can start trying to breastfeed! This will be a really big step for her.
Her chest xray today was great and she's tolerating the nasal cannula wean well. They left her at 2L oxgyen for today, still between 21-30%.
Her withdrawal symptoms are getting better on her meds. She hasn't needed any prns of morphine or versed since the one dose of morphine yesterday morning at 11:30. They also switched her methadone and ativan to oral doses today instead of IV doses. She still gets them on schedule, every 4 hours, alternating between the 2 meds. The pharmacy will plan out a weaning schedule today or tomorrow for her to begin weaning on them.
They d/c'd her lasix today, so she's officially off all IV meds! They plan to take out her PICC line tonight, so no more IV's. Yay, Sofie!
So to recap: she just has her nasal cannula for oxygen and her NG (nasogastric) tube for feedings. She is only getting breast milk for nutrition. And her only meds are methadone and ativan, which are oral medications now. She is in the home stretch, and almost completely "unplugged" as Jack's mom, Vicki, puts it! We may just make it home for Mother's Day...
Sofie's Mom
Her chest xray today was great and she's tolerating the nasal cannula wean well. They left her at 2L oxgyen for today, still between 21-30%.
Her withdrawal symptoms are getting better on her meds. She hasn't needed any prns of morphine or versed since the one dose of morphine yesterday morning at 11:30. They also switched her methadone and ativan to oral doses today instead of IV doses. She still gets them on schedule, every 4 hours, alternating between the 2 meds. The pharmacy will plan out a weaning schedule today or tomorrow for her to begin weaning on them.
They d/c'd her lasix today, so she's officially off all IV meds! They plan to take out her PICC line tonight, so no more IV's. Yay, Sofie!
So to recap: she just has her nasal cannula for oxygen and her NG (nasogastric) tube for feedings. She is only getting breast milk for nutrition. And her only meds are methadone and ativan, which are oral medications now. She is in the home stretch, and almost completely "unplugged" as Jack's mom, Vicki, puts it! We may just make it home for Mother's Day...
Sofie's Mom
4.20.2008
Continuing to Improve
Sorry for the lack of updates yesterday and today. Kenny thought I posted and I thought he posted yesterday. Not to worry, no news was good news! Sofia is still doing really well off the vent. They have even started to wean her oxgyen down on the nasal cannula. She started at 40% oxygen at a flow of 3 Liters and is now down to about 26% oxygen at 2L, and tolerating it well. She still desats to 70's-80's % when she is upset, but she recovers well.
More good progress to report on her feedings! She is now up to 19cc/hr on her continuous feeds which is close to full feeds, so they have stopped her TPN today. She is pretty jaundiced over the last week or so from the TPN affecting her liver. So now that the TPN is off, the jaundice will start to improve over the next few days. Her lipids were stopped on Friday, so she is getting all her nutrition now from breast milk and is doing well. Since she's had better control of her withdrawals on the methadone and ativan, she hasn't thrown up nearly as much and is doing well with feedings. The next step will be to start compressing her feeds from continuous to delivering the same amount over a shorter time frame. So what she would have gotten over 4 hours, will be given over 3 hours, and then over 2 hours, etc. They'll compress feeds this way until she is able to take a full feed over 3o minutes I think. Then maybe we can start trying to breastfeed if she tolerates the larger volumes.
She is still working through some withdrawal issues and has been pretty fussy the last couple of days, but the Methadone and Ativan are definitely helping her. It takes a couple of days for those 2 drugs to really work well for her, and since they started them on Friday, today has been better. She still gets morphine and versed prn if she needs them, but hasn't needed very many doses. She had one dose of morphine this morning, but hasn't needed anything since. And I should clarify, she wasn't really going "cold turkey" off the morphine and versed. They wouldn't do that do her, and we wouldn't have let them either! They had weaned them each down to very low doses prior to turning off the drips and she was also still getting prn doses in addition to that. It just wasn't quite enough for her. So she gets scheduled doses of the methadone and ativan, one or the other every 4 hours. Once her withdrawal symptoms are well controlled on the methadone and ativan, and she is tolerating the full feeds for a while, she will switch to oral doses, so no more IV meds besides daily lasix! The lasix should also be done very soon too, and then once they are sure she doesn't need IV access any longer, they will take her PICC line out and she'll be completely IV free. They will have her on a weaning schedule for the methadone and ativan and wean very slowly over 2-4 weeks. If necessary, we can even take her home on those drugs and continue to wean at home.
No one has officially mentioned a "going home" time frame to us, but from what we gather, we expect maybe 3-4 more weeks and we may be taking Sofia home with us!!! Keep praying for her to progress well and we might just make it home by Mother's Day, which would be the best gift ever! We finally ordered some furniture for the little sweetie peetie and registered for all of our baby stuff this weekend. So we've been formally introduced to the land of Babies R Us - scary! If you've never been, it's VERY overwhelming. I'm happy to say Sofia is sleeping comfortably this evening, so hopefully she'll have a really good night.
Sofia's Mommy
More good progress to report on her feedings! She is now up to 19cc/hr on her continuous feeds which is close to full feeds, so they have stopped her TPN today. She is pretty jaundiced over the last week or so from the TPN affecting her liver. So now that the TPN is off, the jaundice will start to improve over the next few days. Her lipids were stopped on Friday, so she is getting all her nutrition now from breast milk and is doing well. Since she's had better control of her withdrawals on the methadone and ativan, she hasn't thrown up nearly as much and is doing well with feedings. The next step will be to start compressing her feeds from continuous to delivering the same amount over a shorter time frame. So what she would have gotten over 4 hours, will be given over 3 hours, and then over 2 hours, etc. They'll compress feeds this way until she is able to take a full feed over 3o minutes I think. Then maybe we can start trying to breastfeed if she tolerates the larger volumes.
She is still working through some withdrawal issues and has been pretty fussy the last couple of days, but the Methadone and Ativan are definitely helping her. It takes a couple of days for those 2 drugs to really work well for her, and since they started them on Friday, today has been better. She still gets morphine and versed prn if she needs them, but hasn't needed very many doses. She had one dose of morphine this morning, but hasn't needed anything since. And I should clarify, she wasn't really going "cold turkey" off the morphine and versed. They wouldn't do that do her, and we wouldn't have let them either! They had weaned them each down to very low doses prior to turning off the drips and she was also still getting prn doses in addition to that. It just wasn't quite enough for her. So she gets scheduled doses of the methadone and ativan, one or the other every 4 hours. Once her withdrawal symptoms are well controlled on the methadone and ativan, and she is tolerating the full feeds for a while, she will switch to oral doses, so no more IV meds besides daily lasix! The lasix should also be done very soon too, and then once they are sure she doesn't need IV access any longer, they will take her PICC line out and she'll be completely IV free. They will have her on a weaning schedule for the methadone and ativan and wean very slowly over 2-4 weeks. If necessary, we can even take her home on those drugs and continue to wean at home.
No one has officially mentioned a "going home" time frame to us, but from what we gather, we expect maybe 3-4 more weeks and we may be taking Sofia home with us!!! Keep praying for her to progress well and we might just make it home by Mother's Day, which would be the best gift ever! We finally ordered some furniture for the little sweetie peetie and registered for all of our baby stuff this weekend. So we've been formally introduced to the land of Babies R Us - scary! If you've never been, it's VERY overwhelming. I'm happy to say Sofia is sleeping comfortably this evening, so hopefully she'll have a really good night.
Sofia's Mommy
4.18.2008
Finally resting
Sofie has had a rough couple days since they turned off her narcotics. She needed 4 doses each of morphine and versed over night just to help her try to relax and has needed several more just since we got here this morning. She has not slept much over the last 24 hours and she has been having problems keeping her food down. This morning during rounds Dr. S told us she is just not handling going "cold turkey" very well that it would be best to go ahead and start on a schedule of Methadone to help her get through her withdrawals. It's not really what doctors or we want to do, but if it will help her to relax and get better then it may be for the best. So we are officially the proud parents of junkie. I just don't know where we went wrong as parents:) She just got her first dose a little bit ago and she put up a fight but eventually gave in and finally went to sleep. So I am typing as quietly as I can so I don't disturb her.
Dr. S also took a look at Sofie's MRI results today and she just told me that they are actually pretty typical for babies that have been on ECMO. So it is not something that we really need to be too worried about at this point, but that we just need to keep our eyes out for any problems that we see during her development to make sure we stay on top of things should she need any kind of therapy. So for now we for now we will just hope for the best and deal with anything that may come up in the future. She hasn't let us down to this point so I don't see any reason she would start now.
Even with all of her withdrawal problems Sofie is still doing so well with her breathing following her extubation. She will desat a little when she has fits but they pop right back up when she starts to calm down. She has very good breath sounds and her X-rays look great. So way to go Lungs! Dr. S said she would have weaned her oxygen a little more today, but with all the withdrawal issues she is having today it would probably be best to wait. And her blood gasses have been so stable that they are going to get another one in the morning and then they won't get anymore unless they think she is having any problems. I am sure she will appreciate not having to get stuck in the heel anymore for blood, "Ouch". So there is the silver lining. Keep Sofie in your prayers that she can kick these withdrawals so we get closer to going home.
With everything that has been going on she hasn't had time, but I am sure Mom will be putting some picture up pretty soon so everyone can see her beautiful face without a big tube coming out of her mouth.
Sofie's Dad
Dr. S also took a look at Sofie's MRI results today and she just told me that they are actually pretty typical for babies that have been on ECMO. So it is not something that we really need to be too worried about at this point, but that we just need to keep our eyes out for any problems that we see during her development to make sure we stay on top of things should she need any kind of therapy. So for now we for now we will just hope for the best and deal with anything that may come up in the future. She hasn't let us down to this point so I don't see any reason she would start now.
Even with all of her withdrawal problems Sofie is still doing so well with her breathing following her extubation. She will desat a little when she has fits but they pop right back up when she starts to calm down. She has very good breath sounds and her X-rays look great. So way to go Lungs! Dr. S said she would have weaned her oxygen a little more today, but with all the withdrawal issues she is having today it would probably be best to wait. And her blood gasses have been so stable that they are going to get another one in the morning and then they won't get anymore unless they think she is having any problems. I am sure she will appreciate not having to get stuck in the heel anymore for blood, "Ouch". So there is the silver lining. Keep Sofie in your prayers that she can kick these withdrawals so we get closer to going home.
With everything that has been going on she hasn't had time, but I am sure Mom will be putting some picture up pretty soon so everyone can see her beautiful face without a big tube coming out of her mouth.
Sofie's Dad
4.17.2008
Sofia's Extubated!!
Sorry for the late update, we've had quite a busy morning. Good news first - Sofia is extubated!! They pulled her ET tube at 10:30 this morning, and she's now on a nasal cannula at about 40% oxygen. She's had a couple of blood gases since then and they've all been ok.
They stopped her morphine drip today and her versed was stopped yesterday, so no more narcotic drips! She has been having a pretty rough time with this last night and today. She finally went to sleep a few minutes ago after a handful of prn doses this morning and this afternoon. We got to hold her again for about 4 hours to try to help calm her down. It's so nice to be able to hold her and cuddle her when she is hurting, and it seems to help her too. Especially when Daddy sings silly songs! She is a big fan.
Because she's been so upset with her withdrawals today, she's thrown up several times. Hopefully now that she's calmer, she'll do a little better and keep her food in her tummy! Her continuous feeds are now up to 16cc/hr. We're getting close to full feeds on the continuous. I think full feeds would be somewhere around 20cc/hr. So they've been able to decrease her lipids going through her IV. During one of her bad episodes of withdrawals today, her midline IV broke off at the insertion site and had to be removed. This was the line she was getting her TPN and lipids through. She had been getting her morphine and versed through her PICC line. They were split up like that because the narcotics can't be mixed in the same line as the lipids. The PICC line goes all the way to the heart and the midline stops before it reaches the heart. Both are long term types of IV's. Midlines can be left in for 4 weeks I think, and PICC lines can last around a year. Since both of her narcotic drips have been stopped, they didn't need to try to place another midline. Thank goodness, because this was not the day for her to tolerate more needlesticks! As long as her narcotic drips don't have to be restarted, she can just get her lipids and TPN through her PICC line, so she is just down to 1 IV now.
Her MRI results came back with some areas of concern that are "nonspecific". Dr. O. says this doesn't necessarily mean she has had a brain injury. Some of the findings on her MRI are associated with the development of cerebral palsy. But these results can also be seen in normal babies, so we just won't know for sure until she is between 1 and 2 years of age. We will have to watch her as she develops to see if she meets normal milestones in development. We will also have follow up exams and MRIs in a few months. The brain has the ability to heal and possibly regenerate to a small extent until a baby is around 18 months old. We are hoping for the best and praying hard that she will be ok. She has been such a fighter and such a miracle baby so far. Whatever the future may hold, we know she will always be a strong little girl.
Sofia's Mommy
They stopped her morphine drip today and her versed was stopped yesterday, so no more narcotic drips! She has been having a pretty rough time with this last night and today. She finally went to sleep a few minutes ago after a handful of prn doses this morning and this afternoon. We got to hold her again for about 4 hours to try to help calm her down. It's so nice to be able to hold her and cuddle her when she is hurting, and it seems to help her too. Especially when Daddy sings silly songs! She is a big fan.
Because she's been so upset with her withdrawals today, she's thrown up several times. Hopefully now that she's calmer, she'll do a little better and keep her food in her tummy! Her continuous feeds are now up to 16cc/hr. We're getting close to full feeds on the continuous. I think full feeds would be somewhere around 20cc/hr. So they've been able to decrease her lipids going through her IV. During one of her bad episodes of withdrawals today, her midline IV broke off at the insertion site and had to be removed. This was the line she was getting her TPN and lipids through. She had been getting her morphine and versed through her PICC line. They were split up like that because the narcotics can't be mixed in the same line as the lipids. The PICC line goes all the way to the heart and the midline stops before it reaches the heart. Both are long term types of IV's. Midlines can be left in for 4 weeks I think, and PICC lines can last around a year. Since both of her narcotic drips have been stopped, they didn't need to try to place another midline. Thank goodness, because this was not the day for her to tolerate more needlesticks! As long as her narcotic drips don't have to be restarted, she can just get her lipids and TPN through her PICC line, so she is just down to 1 IV now.
Her MRI results came back with some areas of concern that are "nonspecific". Dr. O. says this doesn't necessarily mean she has had a brain injury. Some of the findings on her MRI are associated with the development of cerebral palsy. But these results can also be seen in normal babies, so we just won't know for sure until she is between 1 and 2 years of age. We will have to watch her as she develops to see if she meets normal milestones in development. We will also have follow up exams and MRIs in a few months. The brain has the ability to heal and possibly regenerate to a small extent until a baby is around 18 months old. We are hoping for the best and praying hard that she will be ok. She has been such a fighter and such a miracle baby so far. Whatever the future may hold, we know she will always be a strong little girl.
Sofia's Mommy
4.16.2008
No Extubation Today
Sofia's MRI is scheduled for 6:00 pm. Unfortunately that will be too late in the day to tackle extubation today. So it looks like she will have to wait until morning to get rid of that tube. So that's a big bummer, but we're glad she is getting the MRI done today so she'll be ready to go first thing in the morning. Please pray for a smooth MRI, that she is comfortable, and the MRI results all look good.
Sofie's Mommy
Sofie's Mommy
Waiting For MRI
"Will radiology ever be ready for me?"
Sofia didn't have her MRI yesterday, because radiology was really tied up with a bunch of emergent patients. So we are hoping they'll get her in late today. All babies here that have been on ECMO receive a post-ECMO MRI. They will be looking at her brain to see if there are any areas where she may have had a stroke or a lack of oxygen to parts of her brain. While she was on ECMO, she had daily head ultrasounds to check for bleeding in the brain, or stroke. Being on ECMO, her blood needed to be very thin to avoid clotting in the cannulas and ECMO circuit. Since her blood was very thin, she was at a higher risk for bleeding in the brain. Also, because her lungs and heart were struggling so hard, and she was in such a critical condition to need ECMO, she may have had a lack of oxygen to her brain at certain times. Fortunately, her head ultrasounds were always normal, and Sofia appears to be very alert and interacts well with us. We don't expect them to find anything of concern on the MRI. If the MRI is all clear, it doesn't tell us 100% that everything is normal. There really is no test for that. We just have to wait as Sofia grows and develops to see how she does, but a good MRI indicates that she is most likely ok. We are just waiting for the MRI to be done, and then Sofia will be extubated!!! We are so excited to see her sweet face without the ET tube and neobar! They need to leave her intubated for the MRI, because she'll have to be very sedated so she doesn't move at all while they're doing it. Good luck to them on that.
Once she is extubated, she'll have what is called a nasal cannula to give her oxygen. Then they will gradually wean her down on that until she doesn't need anything to help with her breathing. They'll also remove her OG tube (the feeding tube that goes into her mouth and down to her tummy). She will be so happy not to have anything in her mouth - FINALLY!! They'll put a new, much smaller and softer, feeding tube in that will go into her nose and down to her tummy, so she can continue to get her continuous feeds. The continuous feeds are just easier on her tummy right now until she can handle larger amounts all at once.
She is having some withdrawal symptoms, but not nearly as bad as a few days ago. Her symptoms last night and this morning have been sweating, watery stools, jitteriness, a little irritability, occasional increased heartrate, and she has thrown up 3 times. We think her throwing up has more to do with the narcotic withdrawal than reflux. She hasn't needed any prn doses of morphine or versed for a few days, which is great! They will make another big step in the narcotic weaning today and plan to turn her versed completely off. It's been at 20 since yesterday afternoon. She may need some prn doses of versed to get her through this big change, but it is definitely a positive step toward getting her off these drugs.
Her continuous feeds are at 11cc/hr now, and they are planning on increasing that quite a bit today. So hopefully she'll continue to move things through and digest everything well. Please pray that Sofia's MRI looks good, that she continues to do well with her feedings, and tolerates her narcotic changes well. And lots of extra prayers for a good extubation today!!
Sofia's Mommy
4.15.2008
Look out world
I think we are going to have our hands full with this girl. She is just progressing so fast that we can't keep up. They weaned her Morphine and Versed down 10 each yesterday and she has tolerated so well without having to have any extra doses that they are going to come down 10 more on each today to 30 and 20. That puts her lower on her narcotic settings than the day she was born. They are going up on her feedings again today and she had a nice big poop a little while ago that she had been holding on to the last couple days (Wow).
They are planning on taking out the arterial line in her arm which they use to draw blood from for her blood gasses today. The only down side is she will have to get pricked when they need to get some blood from now on. But on the bright side she won't have to have her arm immobilized anymore and she can get that dressing off which I am sure is getting a little funky by now and one more less object sticking in her is always good.
Hopefully tomorrow we will be talking about another tube being gone. The doctors said this morning that by looking at all her minimal vent settings, good gasses and x-rays that Sofie is telling them that she might be ready to lose that breathing tube!! The only thing holding her up is they want to get her MRI first before they extubate her. They are trying to get her in today, but they were backed up with some more critical patients, so if not today she will be getting it in the morning. So typical, Super Sofie is ready to go and she has to wait on everybody else to get our of her way. It's going to be big step so continue to keep her in your prayers.
Next step....a big girl bed.
Sofie's Dad
They are planning on taking out the arterial line in her arm which they use to draw blood from for her blood gasses today. The only down side is she will have to get pricked when they need to get some blood from now on. But on the bright side she won't have to have her arm immobilized anymore and she can get that dressing off which I am sure is getting a little funky by now and one more less object sticking in her is always good.
Hopefully tomorrow we will be talking about another tube being gone. The doctors said this morning that by looking at all her minimal vent settings, good gasses and x-rays that Sofie is telling them that she might be ready to lose that breathing tube!! The only thing holding her up is they want to get her MRI first before they extubate her. They are trying to get her in today, but they were backed up with some more critical patients, so if not today she will be getting it in the morning. So typical, Super Sofie is ready to go and she has to wait on everybody else to get our of her way. It's going to be big step so continue to keep her in your prayers.
Next step....a big girl bed.
Sofie's Dad
4.14.2008
Big News!!!
Sorry it's such a late post today, but I've been working on this video on and off all day. Sofia was awake a lot today, so we spent a lot of quality time with her. Sofia had a great day! She has weaned quite a bit on the vent, and they're weaning her rate down again as we speak. Today in rounds, they started mentioning extubation soon!!
They also weaned down her narcotics again today to morphine 40 and versed 30. She hasn't really had many withdrawal symptoms the last couple of days which is great! She was just a little jittery today, but not bad. She's been much more awake and alert without being upset, which is so nice to see.
Her continuous feeding is increasing by 1cc/hr every 6 hours. Right now she's at 9cc/hr and doing fairly well with it. Her residuals have been a little more, around 10cc sometimes and she hasn't had a poopie diaper since yesterday around noon, so she needs to get things moving through a little better.
The pressure sore on the back of her head is a little better today. They are keeping her off of it as much as possible and putting antibiotic ointment on it. We are getting ready to give her a bath. And now for the big news...
Sofie's Mommy
Happy Birthday Andrew!
Okay, so it's a couple days late, but Happy Birthday Andrew!
And Sofie says thanks for the socks!
4.13.2008
Nitric Oxide Is Gone!
More good news! When I came in this morning, Sofia's nitric oxide was off. Yay, one more thing gone! She is doing really well on the conventional vent. Her chest xray was still really good this morning, and her blood gases and vitals are all still stable. She is still sleeping comfortably and hasn't needed any prn doses of morphine or versed for over a day and a half. Since she's had a little break in the narcotic weaning, they are going to turn down her morphine by another 10 mcg/kg/hr today, so she'll be at 50 of morphine and 40 of versed.
She had a 9cc residual in her tummy once last night, so they didn't increase her feedings at all. She is still getting 7cc/hr. Hopefully she'll do a little better with that today.
Last night I got to help give her a sponge bath for the first time! When I was washing the back of her head I noticed a pressure sore - poor Sofia, it looks so sore! Now that she can turn her head and move a little more on the conventional vent it should heal quickly. They are keeping her completely off of that side of her head and they're putting antibiotic ointment on it to help it heal quickly. If she remains stable on the conventional vent, I'm hoping we'll be able to hold her very soon! She'll be 5 weeks old tomorrow, and I can't wait to finally get to hold her!
Sofia's Mommy
She had a 9cc residual in her tummy once last night, so they didn't increase her feedings at all. She is still getting 7cc/hr. Hopefully she'll do a little better with that today.
Last night I got to help give her a sponge bath for the first time! When I was washing the back of her head I noticed a pressure sore - poor Sofia, it looks so sore! Now that she can turn her head and move a little more on the conventional vent it should heal quickly. They are keeping her completely off of that side of her head and they're putting antibiotic ointment on it to help it heal quickly. If she remains stable on the conventional vent, I'm hoping we'll be able to hold her very soon! She'll be 5 weeks old tomorrow, and I can't wait to finally get to hold her!
Sofia's Mommy
4.12.2008
Off High Frequency!
Sofia made the switch to the conventional ventilator today around 12:30 pm! She tolerated the switch really well and is stable so far. They also weaned her nitric oxide down to 2, and plan to turn it off tomorrow, so that will be 2 big machines gone tomorrow. She'll just have the new conventional vent and her IV pole in here - it will seem so roomy! It's strangely quiet with the high frequency vent off now. I guess you don't realize how loud it is until it's not on anymore.
Her withdrawals have been much better today. She hasn't needed any prns at all and was able to calm down with us here to help her through it. She has leveled off with her morphine and versed drips where they are, since they haven't been weaned any the last 2 days. I'm sure they will wean again on them tomorrow as long as she is still stable on the vent. Hopefully her withdrawals won't get much worse, since she had a couple of days to rest at the current levels. Thank you all for your continued prayers for Sofia. It has made such a difference in her recovery!
Sofia's Mommy
Her withdrawals have been much better today. She hasn't needed any prns at all and was able to calm down with us here to help her through it. She has leveled off with her morphine and versed drips where they are, since they haven't been weaned any the last 2 days. I'm sure they will wean again on them tomorrow as long as she is still stable on the vent. Hopefully her withdrawals won't get much worse, since she had a couple of days to rest at the current levels. Thank you all for your continued prayers for Sofia. It has made such a difference in her recovery!
Sofia's Mommy
Big Day Today!
Sofia is set to have a big day today. The plan is to switch her over to the conventional vent very soon! She is pretty stable from a respiratory standpoint on the high frequency vent. Her blood gases are consistently good and her chest xray also looks good.
She is doing better with her feeds. She threw up once yesterday when she was having some withdrawals, but other than that has kept everything down the last few days. Her residuals have been fairly minimal, 1-7cc and she only had one 7 cc residual. If she tolerates her vent change well today, they will increase her continuous feedings to 8cc/hr. (It's at 7cc/hr now.) They will keep working up to a higher amount of continuous feeds before changing her back to every 3 hour feeds. The continuous feeds are just a little easier on her tummy right now instead of getting it really full all at once. All babies have some degree of reflux, but CHD babies usually have pretty bad reflux, so we are anticipating that. To help with the reflux issues, she has had Zantac added to her TPN for quite a while. So far, she hasn't had too much of a problem with reflux and throwing up, but getting small continuous feeds helps with this.
She had only been having about 1 stool per day, and needed to have glycerine suppositories every 12 hours. She had 3 stools yesterday and has already had 2 this morning! So she's starting to move things through a little better. They are discontinuing her gycerine suppositories today, which I'm sure she'll appreciate! Her urine output is also improving on just once per day lasix and they plan to discontinue the lasix in the next couple of days.
They are keeping her morphine and versed drips the same again today at 60 and 40, so she's not too stressed for the vent change. She only needed 1 morphine and 1 versed prn yesterday, and only had one bad episode of withdrawals around 6:00 pm. Other than that, she is a little jittery and gets a little upset here and there (especially with diaper changes), but usually we are able to help calm her down without the meds.
Her liver enzymes have been a little elevated this week, so they are watching that a little more closely. Being on TPN for a long time like she has been, irritates the liver. Once she is taking full feeds of breastmilk, they can start decreasing the TPN and lipids and that will help her liver to recover. This is not a long term problem, just something to keep an eye on. Send positive thoughts Sofia's way today for her to tolerate the vent change well and be one step closer to extubation!
Sofia's Mommy
She is doing better with her feeds. She threw up once yesterday when she was having some withdrawals, but other than that has kept everything down the last few days. Her residuals have been fairly minimal, 1-7cc and she only had one 7 cc residual. If she tolerates her vent change well today, they will increase her continuous feedings to 8cc/hr. (It's at 7cc/hr now.) They will keep working up to a higher amount of continuous feeds before changing her back to every 3 hour feeds. The continuous feeds are just a little easier on her tummy right now instead of getting it really full all at once. All babies have some degree of reflux, but CHD babies usually have pretty bad reflux, so we are anticipating that. To help with the reflux issues, she has had Zantac added to her TPN for quite a while. So far, she hasn't had too much of a problem with reflux and throwing up, but getting small continuous feeds helps with this.
She had only been having about 1 stool per day, and needed to have glycerine suppositories every 12 hours. She had 3 stools yesterday and has already had 2 this morning! So she's starting to move things through a little better. They are discontinuing her gycerine suppositories today, which I'm sure she'll appreciate! Her urine output is also improving on just once per day lasix and they plan to discontinue the lasix in the next couple of days.
They are keeping her morphine and versed drips the same again today at 60 and 40, so she's not too stressed for the vent change. She only needed 1 morphine and 1 versed prn yesterday, and only had one bad episode of withdrawals around 6:00 pm. Other than that, she is a little jittery and gets a little upset here and there (especially with diaper changes), but usually we are able to help calm her down without the meds.
Her liver enzymes have been a little elevated this week, so they are watching that a little more closely. Being on TPN for a long time like she has been, irritates the liver. Once she is taking full feeds of breastmilk, they can start decreasing the TPN and lipids and that will help her liver to recover. This is not a long term problem, just something to keep an eye on. Send positive thoughts Sofia's way today for her to tolerate the vent change well and be one step closer to extubation!
Sofia's Mommy
4.11.2008
Hanging in there.
Sofie is still progressing along pretty well. She had a bit of a rough time last night with her withdrawals. About 2 a.m. she was calm enough where we thought we could go home. It just really breaks your heart seeing her trying to cry and nothing will come out. It is such a helpless feeling when all you can do is hold her hand and tell her it is going to be alright. But she is a little more relaxed this morning and the doctors have decided not to wean her anymore today and just let her have a day to try and rest, which I'm sure she will appreciate. We are a little more then half way from where she started on her sedation levels so hopefully it won't be too much longer.
There is some good news though. Her chest X-ray looked slightly better this morning than yesterday and her blood gases have been so steady lately that that they are only checking them every 12 hours now. She is getting her feedings bumped up to 6ccs an hour now and this evening they will increase up to 7 if she continues to move things through her belly. They also decided this morning to turn her Nitric Oxide down from 8 to 5 and they are dropping her MAP setting on the vent another point to 13. These are all real positive steps.
Which all leads up to the really big news! If she continues to do good with her new settings she is going to get another crack at the conventional ventilator tomorrow. And I'm sure this time she will love it so much she won't want to go back. Plus it can't be much fun when you're constantly shaking from the oscillating vent and trying to relax as you are going through withdrawals. Send some positive thoughts her way and hopefully she will be breathing a big sigh of relief pretty soon. The doctors said this morning she has come a long way in a month and I couldn't agree more.
Sofie's Dad
There is some good news though. Her chest X-ray looked slightly better this morning than yesterday and her blood gases have been so steady lately that that they are only checking them every 12 hours now. She is getting her feedings bumped up to 6ccs an hour now and this evening they will increase up to 7 if she continues to move things through her belly. They also decided this morning to turn her Nitric Oxide down from 8 to 5 and they are dropping her MAP setting on the vent another point to 13. These are all real positive steps.
Which all leads up to the really big news! If she continues to do good with her new settings she is going to get another crack at the conventional ventilator tomorrow. And I'm sure this time she will love it so much she won't want to go back. Plus it can't be much fun when you're constantly shaking from the oscillating vent and trying to relax as you are going through withdrawals. Send some positive thoughts her way and hopefully she will be breathing a big sigh of relief pretty soon. The doctors said this morning she has come a long way in a month and I couldn't agree more.
Sofie's Dad
4.10.2008
1 Month Old!
It's hard to believe Sofia is 1 month old already. It seems like we've been here forever, but I still think of her as just being a few days old, like she should be "paused" until we can get to her. But she's getting bigger, and I feel like we've missed out on so much already. I'm thankful the worst looks like it's behind us, and she's getting closer to going home and getting to be a "normal" baby every day.
Not much is changing in the plan for today. Her morphine is going down 10 more to 60 and the versed is staying at 40. She had a pretty bad episode yesterday evening around 6:00 where she was very upset. She looked so terrified, shaking and trying to cry. She got a PRN (extra, not scheduled) dose of versed to try to calm her down and it didn't seem to touch her, so she also got a PRN morphine dose a few minutes later. Finally with some more soothing she went to sleep around 6:30 or so. She had a pretty good night after that and didn't need anymore PRN doses until this afternoon around 1:00 when she needed 1 dose of versed. She's been fairly calm since then.
Her chest xray was stable this morning, but her lungs weren't quite as well expanded as they were yesterday so no vent changes. Instead, they dropped the nitric down again to 8. Her blood gases continue to be stable.
Her feedings have been increased today to 4cc/hr and if she tolerates that okay, they'll go up again this evening to 5cc/hr. Moving in the right direction! Her residuals (leftovers in her tummy) have been less last night and today. They've been around 2cc each time, with the biggest one being last night that was 6cc. So she's moving it through her tummy a little better now. She just needs to have more poopie diapers - she's holding out on us and hasn't had one since yesterday evening.
As best as they can tell she weighs around 8 lbs 10 oz, right now. Some of it is still water weight, but most of her swelling is gone now. She officially weighed 6 lbs 4 1/2 oz when she was born, but that was kind of an estimate. (It's hard to weigh with all the tubes and lines in, and weight wasn't the highest priority at her birth as you can imagine.) She looked bigger than that though, so we're thinking she may have weighed closer to 7 lbs when she was born. She got up to 9 lbs 3 oz when her swelling was bad. Either way, she looks so much better now that the swelling in her upper body has mostly resolved. Her weight now should be fairly accurate and soon we'll be wanting her to start gaining so we can go home! We still have a long way to go and no one has mentioned going home at all to us, but we tried to convince her team in rounds this morning just to come home with us and set up a mini NICU in her room. They were all for it, but I think the other babies would miss them here at the hospital!
Sofia's Mommy
4.09.2008
Check Out My New Room!
Sofia is settling in nicely in her new, luxurious room. Check out the window, we are officially out of the ECMO cave!
By some miracle, Andrew was able to drag Kenny away to the Royals home opener yesterday, so Daddy brought back a new little Royals monkey for Sofie to snuggle. Sugarbear had to go home last night to get his first bath, so Royals monkey had to pinch snuggle in Sugarbear's place. Judging by this smile this morning, I think he did okay...
Notice my throw back powder blue ribbon today...Go Royals!!
The new plan for today is to decrease Sofia's nitric oxide from 15 down to 12 at noon and then down to 10 at 5:00 this afternoon. They are leaving her other vent settings and her narcotic drips alone today to give her a little break. She seems to be doing better so far today with her withdrawals and hasn't been too upset. She slept a lot this morning and has just been slightly jittery while awake, but other than that seems very comfortable. Her feedings are still continuous breastmilk on a pump and they'll increase that today to 3cc/hour from 2cc/hour. Her lasix are once a day now, starting yesterday afternoon. And today is the last day for her antibiotics. Her chest xray still looked good this morning after having her chest tube clamped yesterday. So now for the big news... When we came in this morning, her chest tube was out! Yay, Sofie, we are now chest tube free!! I'm sure she feels better having them all gone.
Look, mom, no chest tubes!Sofie's Mommy
4.08.2008
Withdrawals
Sorry for the late post today, but we've been a little busy. It looks like Sofie has finally hit her wall in the narcotic weaning process. She has been having withdrawals last night and today. She's been pretty jittery and irritable. Her heartrate is up because she's upset, and she has been trying to cry. She makes her sad crying face and opens her mouth, but no sound comes out since her ET tube is in. It's so hard to watch. We try to comfort her and put our arms around her on the warmer or give her a pacifier and try to calm her down. It helps sometimes, but she did need an extra dose of versed to get her by this afternoon. She got one dose last night too. Her morphine drip stayed the same today and they came down by 10 on her versed. So she's at 70/40 morphine/versed now. She has weaned down to that amount really quickly. Now it will be a slower process. We knew she would get to this point in the narcotic weaning, and we're just hoping she gets through the rough part quickly and with as little side effects as possible.
Her chest xray this morning was awesome again, so they clamped her chest tube and may go ahead and take it out tomorrow if her morning xray still looks good. She tolerated the wean on her vent settings yesterday very well, so they weaned her nitric oxide down again today to 15 (she started at 20). For now they left her MAP (mean airway pressure) at 14, so as not to stress her out too much since she's having a bit of a hard day. She's still at 25% oxygen (this pretty much stays 22-29% now all the time). They said today in rounds their goal is to get her on the conventional vent by Thursday or Friday! I know she'll be able to stay off the high frequency this time - she is so tough!
They sent more blood cultures on Sunday I think just to be sure she didn't have another infection brewing. So far they are all negative which is great news. Her vancomicin and gentamycin will be stopped tomorrow after a 10 day run.
They took off her dressing from her right chest tube site today. It looks really good. She actually had 2 chest tubes on that side. The first one was replaced a couple days after she was born and that site has healed very nicely too.
She's continuing to lose water weight and looks great! She's peeing up a storm and just needs to start pooping a little more. They are giving her glycerine suppositories every 12 hours until she starts to have regular BMs on her own to keep things moving through. She was having some trouble moving her feedings through and threw up quite a bit this morning. She also was having quite a bit of residual "left over milk" in her tummy after her feedings. Hopefully when she starts pooping more this will get better. She also could have thrown up because of the narcotic withdrawal. They switched her to continuous feeds this afternoon. Her breastmilk is on a pump and runs in at 2cc per hour (5cc is a teaspoon). By running it in slowly and continuously they are trying to avoid overfilling her tummy until she can move things through quicker.
She also moved to her new room early this morning. She now has a window spot! Yay, sunlight! Although today it's been rainy, so not too much sun today, but it's still nice to be out of the "ECMO Cave." Please pray for Sofie to be comfortable coming off the narcotics and to tolerate her feedings well and keep her food down. Prayers for good lung function this week and hopefully making the big jump to the conventional vent!
Sofie's Mommy
Her chest xray this morning was awesome again, so they clamped her chest tube and may go ahead and take it out tomorrow if her morning xray still looks good. She tolerated the wean on her vent settings yesterday very well, so they weaned her nitric oxide down again today to 15 (she started at 20). For now they left her MAP (mean airway pressure) at 14, so as not to stress her out too much since she's having a bit of a hard day. She's still at 25% oxygen (this pretty much stays 22-29% now all the time). They said today in rounds their goal is to get her on the conventional vent by Thursday or Friday! I know she'll be able to stay off the high frequency this time - she is so tough!
They sent more blood cultures on Sunday I think just to be sure she didn't have another infection brewing. So far they are all negative which is great news. Her vancomicin and gentamycin will be stopped tomorrow after a 10 day run.
They took off her dressing from her right chest tube site today. It looks really good. She actually had 2 chest tubes on that side. The first one was replaced a couple days after she was born and that site has healed very nicely too.
She's continuing to lose water weight and looks great! She's peeing up a storm and just needs to start pooping a little more. They are giving her glycerine suppositories every 12 hours until she starts to have regular BMs on her own to keep things moving through. She was having some trouble moving her feedings through and threw up quite a bit this morning. She also was having quite a bit of residual "left over milk" in her tummy after her feedings. Hopefully when she starts pooping more this will get better. She also could have thrown up because of the narcotic withdrawal. They switched her to continuous feeds this afternoon. Her breastmilk is on a pump and runs in at 2cc per hour (5cc is a teaspoon). By running it in slowly and continuously they are trying to avoid overfilling her tummy until she can move things through quicker.
She also moved to her new room early this morning. She now has a window spot! Yay, sunlight! Although today it's been rainy, so not too much sun today, but it's still nice to be out of the "ECMO Cave." Please pray for Sofie to be comfortable coming off the narcotics and to tolerate her feedings well and keep her food down. Prayers for good lung function this week and hopefully making the big jump to the conventional vent!
Sofie's Mommy
4.07.2008
A little more good news!!
We just found out we are going to be on the move again in a little while. Sofie is moving out of the ECMO room which is usually reserved for the really sick babies. So I guess they think that Sofie is doing good enough that they are kicking her out of her spot to make room for another baby that may need it more than she does in the future. They tell us she is going to be getting a room with a view because she has earned it. They didn't say what it was a view of, but after spending the last 4 weeks in a dark room in the middle of the unit and oblivious to anything going on outside the hospital walls just being able to see some sunshine will be alright with us. So way to go Sofie!
Sofie's Dad
Sofie's Dad
Another good day so far
Sofie is dominating her CDH like the Jayhawks are going to dominate Memphis tonight. She is really starting to show off now. She seems to be liking her tummy being full and looks really good now that most of her swelling is gone. It is unbelievable how much she has changed just in a couple days. They cleaned up her incision this morning because they were concerned it may be leaking a little bit of fluid. But it looks like that is under control and it looks awesome. Her skin has healed really well, which is good because she has a lot of extra holes in her. She had another poopy diaper this afternoon so her bowels are doing what they are supposed to, which is very good. It was a real shame that I missed out on it because I wasn't in the room, but Mom stepped up and got her all cleaned up:) They also turned down her morphine and versed again today by 10 each, so the morphine's now at 70 and the versed's at 50. She's doing well with it so far, just a little jittery here and there.
The surgeons are still holding off on taking out her other chest tube until it starts putting out a little less fluid. Her doctors don't think she will be able to get down to the levels of output the surgeons are wanting before they will take it out. They think she just needs to start reabsorbing the extra fluid on her own without the tube. But the surgeons are worried that they may have to put in another tube if she starts to reaccumulate fluid again after they take it out, which we don't want either because I sure it doesn't feel real good. Her lungs were pretty well expanded on her X-ray this morning so we will see what happens.
While it doesn't seem like much, she is taking another big step today. They have turned her MAP (Mean Airway Pressure) setting on her vent down from 15 to 14. It is only down 1 but it will be a big deal if she can take it. In the past every time they have tried to turn down this setting she has not liked it at all. But they made the adjustment this morning and so far she looks like she is handling it pretty well. She is keeping her sats in the mid 90's and her last blood gas since the adjustment was good. So lets just hope she continues to improve like she has the last couple days. ROCK CHALK SOFIE!
Sofie's Dad
P.S. Here is the video from this morning...
The surgeons are still holding off on taking out her other chest tube until it starts putting out a little less fluid. Her doctors don't think she will be able to get down to the levels of output the surgeons are wanting before they will take it out. They think she just needs to start reabsorbing the extra fluid on her own without the tube. But the surgeons are worried that they may have to put in another tube if she starts to reaccumulate fluid again after they take it out, which we don't want either because I sure it doesn't feel real good. Her lungs were pretty well expanded on her X-ray this morning so we will see what happens.
While it doesn't seem like much, she is taking another big step today. They have turned her MAP (Mean Airway Pressure) setting on her vent down from 15 to 14. It is only down 1 but it will be a big deal if she can take it. In the past every time they have tried to turn down this setting she has not liked it at all. But they made the adjustment this morning and so far she looks like she is handling it pretty well. She is keeping her sats in the mid 90's and her last blood gas since the adjustment was good. So lets just hope she continues to improve like she has the last couple days. ROCK CHALK SOFIE!
Sofie's Dad
P.S. Here is the video from this morning...
4.06.2008
Keeping The Chest Tube For A While Longer
Sofia has had a big day today. At 27 days old, she had her first feeding. They will be feeding her through a feeding tube called an OG or orogastric tube. It goes into her mouth and down to her tummy. She'll get 5cc each time, which is a teaspoon, and they'll feed her every 3 hours. So far, she has tolerated her first 2 feedings just fine and hasn't thrown anything up. She did have quite a bit left in her tummy from her first feeding. This is called "residual", and they check to see how much is left from the previous feeding each time before they feed her. She had 4cc left from the first feed before they gave her 2nd one. They said this is normal at this point, and it will take her digestive system a while to figure out how to move things through. She is getting a glycerine suppository this afternoon to try to help her get things moving. She had her first official poopie diaper last night! (Again, I think this may have been excitement over the big win last night!) They weren't necessarily waiting for her to do this before feeding her. It had more to do with listening to her tummy with a stethoscope and wanting to hear good active bowel sounds. She also had been pretty sedated up until the last couple of days. The narcotics also slow down the intestines, so they wanted some of that to wear off and for her to be more alert and awake. Since she had good bowel sounds the last couple of days and has been more alert, that's what helped them decide to go ahead and start feeding her.
She also got her foley catheter out this morning, so I'm sure she feels much better having that gone. She's still getting lasix twice a day to help with her swelling, which is SO much better! Her ears are back to normal and her facial swelling is almost completely gone. Her eyes are still just a little swollen sometimes, depending on what position she's been laying in. Her head still has a little swelling, but overall looks tons better than it did earlier in the week. She finally looks like herself again. She has to feel so much better!
They almost took out her chest tube this weekend. Finally they decided to go ahead and leave it in for now. It's still draining quite a bit, so they want that drainage to slow down a little bit before they remove it. They don't want to risk taking it out too early and then having to put another one in. Eventually they will have to go ahead and just take it out, because as long as it's in there and draining, her body will continue to make more fluid to fill up that space. When they take it out, her body will have to learn to reabsorb that fluid on its own. Her chest xray today was great, and both her lungs are well expanded. Good girl, Sofie!
She's been very happy the last couple of days with her oxygen setting on her vent being between 25-29%. 21% is normal room air, so that's really good. The other settings having to do with the ventilation and pressure haven't changed too much. She tends to like them right where they are, so no one is rushing her. Her nitric oxide is finally going to be decreased a little today from 20 down to 18.
They are continuing to wean down her morphine and versed. Each one is going down by 20 today, so the morphine will be at 80 and the versed will be at 60. So far, she's still doing well with the weaning process.
Sofie's Mommy
She also got her foley catheter out this morning, so I'm sure she feels much better having that gone. She's still getting lasix twice a day to help with her swelling, which is SO much better! Her ears are back to normal and her facial swelling is almost completely gone. Her eyes are still just a little swollen sometimes, depending on what position she's been laying in. Her head still has a little swelling, but overall looks tons better than it did earlier in the week. She finally looks like herself again. She has to feel so much better!
They almost took out her chest tube this weekend. Finally they decided to go ahead and leave it in for now. It's still draining quite a bit, so they want that drainage to slow down a little bit before they remove it. They don't want to risk taking it out too early and then having to put another one in. Eventually they will have to go ahead and just take it out, because as long as it's in there and draining, her body will continue to make more fluid to fill up that space. When they take it out, her body will have to learn to reabsorb that fluid on its own. Her chest xray today was great, and both her lungs are well expanded. Good girl, Sofie!
She's been very happy the last couple of days with her oxygen setting on her vent being between 25-29%. 21% is normal room air, so that's really good. The other settings having to do with the ventilation and pressure haven't changed too much. She tends to like them right where they are, so no one is rushing her. Her nitric oxide is finally going to be decreased a little today from 20 down to 18.
They are continuing to wean down her morphine and versed. Each one is going down by 20 today, so the morphine will be at 80 and the versed will be at 60. So far, she's still doing well with the weaning process.
Sofie's Mommy
4.05.2008
Game Day
Sofie was awake and ready for the big game this morning. They decided to wait until tomorrow to take out that other chest tube, because it is still draining quite a bit. They are continuing her antibiotics through tomorrow. And they weaned her morphine down again, so it's at 100 now and her versed is going to stay at 80 for now. So far, it doesn't seem like she's had any withdrawal symptoms, but it's still pretty early. She's down to 29% oxygen on her vent, but she still likes her other vent settings to be left alone. She's taking small steps, but doing really well for everything she's been through. She'll be happy tomorrow, because tomorrow she'll get to eat for the first time! Yeah!! Here is Sofie getting ready for the big game...
Sofie's Mommy
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4.04.2008
Still Behaving
We had another good night last night. Her chest xray this morning was very good, and both of her lungs are expanded more. The surgeons came by to look at her this morning and said they'll take out her other chest tube tomorrow. So she'll be chest tube free finally!
They took out her foley catheter yesterday afternoon, but then her urine output decreased, so they had to put it back in overnight. They still think the morpine makes her retain urine. They are increasing her Lasix to twice a day instead of once a day to help her get rid of more fluid. Her head is so much less swollen. She actually has ears again!
She's getting her last doses of the vancomicin and gentamycin tonight, so then she'll be done with antibiotics. They've also stopped replacing her fluid loss from her chest tubes with albumin (a large protein found in blood) and have switched her back to normal saline.
They decreased her morphine and versed by 10 each yesterday late in the afternoon. They are taking them down some more later today. So today they will go from 13o of morphine to 110, and from 100 of versed to 90. So far she hasn't shown much difference, since they went down on it yesterday. She didn't need any extra doses of pain medication last night or today and it still comfortable and has been sleeping since we got here this morning. It's still pretty early in the weaning process, but pain-wise she is tolerating it really well so far. Keep praying for more big strides toward recovery!
Sofie's Mommy
They took out her foley catheter yesterday afternoon, but then her urine output decreased, so they had to put it back in overnight. They still think the morpine makes her retain urine. They are increasing her Lasix to twice a day instead of once a day to help her get rid of more fluid. Her head is so much less swollen. She actually has ears again!
She's getting her last doses of the vancomicin and gentamycin tonight, so then she'll be done with antibiotics. They've also stopped replacing her fluid loss from her chest tubes with albumin (a large protein found in blood) and have switched her back to normal saline.
They decreased her morphine and versed by 10 each yesterday late in the afternoon. They are taking them down some more later today. So today they will go from 13o of morphine to 110, and from 100 of versed to 90. So far she hasn't shown much difference, since they went down on it yesterday. She didn't need any extra doses of pain medication last night or today and it still comfortable and has been sleeping since we got here this morning. It's still pretty early in the weaning process, but pain-wise she is tolerating it really well so far. Keep praying for more big strides toward recovery!
Sofie's Mommy
4.03.2008
CDH Awareness Day Slideshow
Thank you to everyone who wore turquoise in support of Sofia and all other CDH babies on Monday. I put together a slideshow of the great pictures you all sent. Sorry it's taken so long for me to post it!
Silly Sofie
Snuggling Sugarbear this morningSofia's is doing really well without her right chest tube. Her xray this morning showed hardly any fluid on either side. The swelling in her head and face is so much better today. She's starting to look like herself again and she can open her eyes a little easier. She was just awake and smiling at us. She still doesn't quite know what to think of the pacifier, but she seems to like it. I think maybe because it tastes like vanilla. Finally, a taste besides ET tube (yuck)! In rounds this morning they mentioned starting to wean her morphine sometime soon. I am really hoping the narcan study has helped her and her withdrawals won't be quite as bad. The big news today was that she may get to start eating in the next day or two. It will just be about 1cc (5cc's is a teaspoon) at a time, and it will be through a tube. But at least she'll be getting some food in her tummy finally. I'm sure she feels hungry!
Last night before we left, they lifted her up with all her tubes to try to weigh her (didn't work too well), but we got to "pretend" hold her by putting our hands under her and holding her up a little bit! Of course, we have pictures! We were surprised and so excited to get to do this. And she was awake and looking around the whole time, like "What are you crazy people doing to me?" After we put her down, she was pretty tired and they hadn't renested her with her blankets yet. She loves to stretch out, and we got a picture of her all stretched out before they finished making her bed. What a silly Sofie!
Sofie's Mommy
4.02.2008
Right Chest Tube Is Gone!!
Sofia's right chest tube came out at 4:30, and she's doing great. She just had another chest xray, and she'll have another one in the morning to make sure she's doing okay without the chest tube. She made her big move just fine, and got some new pals to keep her company. See the picture below. Kenny got to help wash her hair a little and brush it tonight. I got to try to give her her first pacifier, which I didn't know you could do with the ET tube in. She kind of chewed it and looked confused, then she was tired and went to sleep, so we'll try again later. Now that she's back in a real bed (sort of), we can bring a few things from home so it will be a little cozier for her. I hope she can get that other chest tube out sometime over the weekend. Baby steps towards holding her! Her dopamine's been turned off all day, and her blood pressure is doing fine, so that's really good too. Keep having these good days Sofie!
Sofie's Mommy
Sofie's Mommy
Losin' A Tube & Moving Again
We've just finished moving back into the old room, and Sofia graduated back to a radiant warmer. No more OR table! She looks more comfortable and less like she's going to jump off and run away. Even though she was safe and secure on there, it always just looked a little funny to see her laying out on a table with nothing around her. The new (old) spot is more cozy, and now we can bring some more pals in to keep her company. Don't worry, Sugarbear, you are still the favorite!
They've started to wean her settings just a tiny bit on the high frequency vent today, but it will be a couple more days for any bigger changes. She is doing well and staying stable on 30-36% oxygen today.
Sofia's incision from her repair surgery looks so much better. See the picture at the bottom of this post. Her head and ears are a little bit less swollen, but her eyes are still pretty swollen. They've gone down a little this afternoon, since she received her daily dose of Lasix and is peeing up a storm.
Her left chest tube drained a bunch off yesterday - at least 200cc I would guess. Her chest xray this morning was really good. That right chest tube hasn't put out much, if anything, for a while and her right lung looks good, so they clamped that right chest tube this morning. They just repeated her chest xray and it looks great. They wanted to make sure she wouldn't start reaccumulating fluid after they clamped the chest tube on that side. Since she didn't, they've decided to take out the right chest tube this afternoon! We're waiting for them to come by and do that now. I'm sure she'll be glad to have it gone!
They've started to wean her settings just a tiny bit on the high frequency vent today, but it will be a couple more days for any bigger changes. She is doing well and staying stable on 30-36% oxygen today.
Sofia's incision from her repair surgery looks so much better. See the picture at the bottom of this post. Her head and ears are a little bit less swollen, but her eyes are still pretty swollen. They've gone down a little this afternoon, since she received her daily dose of Lasix and is peeing up a storm.
Her left chest tube drained a bunch off yesterday - at least 200cc I would guess. Her chest xray this morning was really good. That right chest tube hasn't put out much, if anything, for a while and her right lung looks good, so they clamped that right chest tube this morning. They just repeated her chest xray and it looks great. They wanted to make sure she wouldn't start reaccumulating fluid after they clamped the chest tube on that side. Since she didn't, they've decided to take out the right chest tube this afternoon! We're waiting for them to come by and do that now. I'm sure she'll be glad to have it gone!
3 1/2 weeks old
The Big Owie is Getting Better!
4.01.2008
Article On CDH & Sofia In Iola Register!
The Iola Register in my hometown of Iola, KS, published an article in today's paper about CDH Awareness Day and Sofia. The Register was invited to Jefferson Elementary, where my mom works in the library, to take pictures of their CDH Awareness Day Celebration. The kids and staff all wore turquoise to celebrate CDH Day as a school. They also made posters with pictures of Sofia and big turquoise ribbon banners and displayed them throughout the school. The teachers wore buttons from Breath of Hope and they made turquoise ribbons for everyone to wear. At the end of the day, the Register came to take a school picture with everyone wearing turquoise and displaying the banners. At the count of three, when the photographer snapped the picture, they all chanted....Go Sofia Rose!!! Thank you to Deb Greenwall, all the staff and kids at Jefferson Elementary, and the Iola Register for helping to raise CDH awareness and for supporting Sofia! Below is a picture of all the Jefferson kids and staff in their turquoise. You can read the story in the Iola Register here.
Sofia's Mommy
Sofia's Mommy
Shaking Away
Sofia is liking the high frequency vent today. I guess she just likes all the expensive toys. She's pretty much sampled everything Children's Mercy has to offer at this point. But the high frequency vent (the shake box) seems to be her favorite. I joke that she likes to shake because I laid on a vibrating back massage mat a lot while I was on bedrest.
She is stable today and her blood gases have been good. The plan is just to continue everything for a while longer and then try to wean down again and switch back to the conventional vent. They increased her nitric oxide to 20 today just to make good use of it while it's there. They are adjusting her IV fluids today and giving her Lasix once a day to try to help get rid of some of her swelling. They're continuing to wean her Dopamine and her blood pressure has been stable. Her morphine and versed drips are still at 140 and 110 and she is comfortable. Her incision is looking so much better! It looks a lot less painful than it did a few days ago, so I'm so happy for that.
Her chest tubes are draining better today, so they must be a bit positional. They are hoping to take them out soon, which would be really good. I'm sure she'll be glad to get rid of them!!
She is still calling the shots, that's for sure. But she'll tell us when she is good and ready to make the switch and to finally get rid of that ET tube! Here is a picture of Sofie from yesterday, sporting her turquoise ribbon for CDH Awareness Day. Thanks for all the great pictures. I got lots of great stories too from people who had their own CDH Awareness events in Sofia's honor. I'm working on the slideshow today, but it's not too late to send me pictures. I can add them at any time. Thanks to everyone for wearing their turquoise yesterday and helping to spread CDH Awareness!
I'm also really excited, because this morning, my hometown newspaper contacted me in regards to running a story on CDH and Sofia. I'm hoping it will be in the paper tonight and might be available online as well. Check later today at www.iolaregister.com
Sofia's Mommy
She is stable today and her blood gases have been good. The plan is just to continue everything for a while longer and then try to wean down again and switch back to the conventional vent. They increased her nitric oxide to 20 today just to make good use of it while it's there. They are adjusting her IV fluids today and giving her Lasix once a day to try to help get rid of some of her swelling. They're continuing to wean her Dopamine and her blood pressure has been stable. Her morphine and versed drips are still at 140 and 110 and she is comfortable. Her incision is looking so much better! It looks a lot less painful than it did a few days ago, so I'm so happy for that.
Her chest tubes are draining better today, so they must be a bit positional. They are hoping to take them out soon, which would be really good. I'm sure she'll be glad to get rid of them!!
She is still calling the shots, that's for sure. But she'll tell us when she is good and ready to make the switch and to finally get rid of that ET tube! Here is a picture of Sofie from yesterday, sporting her turquoise ribbon for CDH Awareness Day. Thanks for all the great pictures. I got lots of great stories too from people who had their own CDH Awareness events in Sofia's honor. I'm working on the slideshow today, but it's not too late to send me pictures. I can add them at any time. Thanks to everyone for wearing their turquoise yesterday and helping to spread CDH Awareness!
I'm also really excited, because this morning, my hometown newspaper contacted me in regards to running a story on CDH and Sofia. I'm hoping it will be in the paper tonight and might be available online as well. Check later today at www.iolaregister.com
Sofia's Mommy
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