At about 2:30 in the morning Avalon had an episode of SVT. You can read about what that is here: http://www.webmd.com/heart-disease/tc/supraventricular-tachycardia-overview
Her heartrate went up to 323 at it's peak and they couldn't get it down for a while. They tried all kinds of stimulation things to get it down but nothing was working. Finally by putting ice packs on her they got it back into a normal rhythm. They then did an EKG and we are waiting for the results to be read by the cardiologist on that.
They are actually currently doing an ultrasound on her heart as well. Which they will send to a specialist at Primary Children's Hospital and we will hopefully get the results back tonight.
If she has another episode then she will be sent to Primary Children's. I hope and pray she doesn't have it happen again.
UPDATE
Avalon's heart ultrasound showed a small hole between the upper chambers called a pfo. They said it's very small and normally don't cause any problem at all and that it should heal just fine on its own as she develops and they don't expect it to cause any more problems especially because she hasn't had any more events since that one.
Just talked to the Cardiologist again. He said that he will give Avalon a pass on her SVT spell and won't start Beta Blockers unless it happens again.
Tuesday, April 29, 2014
Monday, April 28, 2014
Acid Reflux and Apnea
So Avalon is 4 weeks old now. She doesn't have her nasal cannula anymore nor does she have a feeding tube. YAY! She is up to 4 lbs 11 oz. :) I honestly thought she'd be home by now. The sad fact is that she would be home by now if she could just get over her apnea spells. She is now on all food by mouth, either from me or bottles so that's great. For NICU babies that's typically the biggest hurdle. Unfortunately for her it's her apnea. Her team of doctors believes that its her acid reflux that is causing her to protect her airway (which is good for her to do) which then though causes her not to breathe and go into the apnea and have her oxygen saturation drop too low. MOST of her spells she gets out of on her own without any help. But she is still having 1-2 a day that require stimulation or the oxygen mask to get her out of it. She has to go 7 days without any apnea in order to go home.
She is on prilosec for her reflux but it doesn't seem to be making very much of a difference. The doctors wanted to start her on thickened feeds through her bottles but I didn't want them to. All my instincts told me that would make things much worse especially in the long run. The developmental specialist agreed with me, thank goodness. So I met with the whole team this morning and asked if we could try having her on her stomach after feeds for a bit as that helped a lot with Autumn. They agreed to try that first. So for the next 48 hours we will try that with her on an incline as well and see if that makes a difference. I really think it will. If it doesn't then our next step is to decrease the amount of calorie fortification that is going in her bottles to see if that helps her. Since she often does better after breastfeeding from me than when she has a bottle of breastmilk with the added fortifier in it. They don't really want to do this because they want her to keep gaining weight well but I think she will just fine with strait breastmilk. If that doesn't help then we will try an antibiotic called arithromiocin (don't know how to spell that) that actually causes the GI tract to empty a bit more quickly which could help her not to reflux as much. If all those things fail THEN we will try thickened feeds. Hopefully at least one of those things will work first.
So that's our plan for now. Fingers crossed that she will have huge improvement in the coming week and we can take her home!
Here are a bunch of pictures to enjoy!
She is on prilosec for her reflux but it doesn't seem to be making very much of a difference. The doctors wanted to start her on thickened feeds through her bottles but I didn't want them to. All my instincts told me that would make things much worse especially in the long run. The developmental specialist agreed with me, thank goodness. So I met with the whole team this morning and asked if we could try having her on her stomach after feeds for a bit as that helped a lot with Autumn. They agreed to try that first. So for the next 48 hours we will try that with her on an incline as well and see if that makes a difference. I really think it will. If it doesn't then our next step is to decrease the amount of calorie fortification that is going in her bottles to see if that helps her. Since she often does better after breastfeeding from me than when she has a bottle of breastmilk with the added fortifier in it. They don't really want to do this because they want her to keep gaining weight well but I think she will just fine with strait breastmilk. If that doesn't help then we will try an antibiotic called arithromiocin (don't know how to spell that) that actually causes the GI tract to empty a bit more quickly which could help her not to reflux as much. If all those things fail THEN we will try thickened feeds. Hopefully at least one of those things will work first.
So that's our plan for now. Fingers crossed that she will have huge improvement in the coming week and we can take her home!
Here are a bunch of pictures to enjoy!
Tuesday, April 22, 2014
The last couple of weeks
I haven't updated in a little while. Sorry about that. Life is pretty hectic.
Avalon is doing quite well. Last week she had a bit of a rough week, as did I. I came down with a horrible virus that made me throw up and have more diarrhea than I've ever had in my life. It was horrible. I got so weak that Tyler had to carry me anywhere I needed to go. Luckily it was only bad for two days. I had to stay away from Avalon though and that was so hard. She was a bit sick as well, though nothing like me thank goodness. She didn't eat well for the week and had to be fed mostly through her G Tube.
She has now graduated up to stage 3 feeding! YAY! This means she has 6 out of 8 of her feedings BY MOUTH. Either by breast or bottle. The other two go in her feeding tube. She is still getting used to the change and is often too sleepy to take all 3 bottles during the night but she always takes the breast and does great. I love that she does so well at breastfeeding. I have been able to work it out the last couple of days to feed her three times a day. It's been nice to spend some extra time with her. I hope I can keep doing it until she can come home. She needs to take all 6 feedings completely for 2 days in order to be upped to stage 4 which is all food by mouth. Then she can get her feeding tube out after 2 more days of that!
She still has the nasal canula for oxygen flow. It is set on room air percentage but the flow helps her to remember to breathe. She is still having several ABD spells and several desaturations. She mostly recovers from these on her own but sometimes requires stimulation to get over them. I think it will just take some more time for her brain and body to learn better what it needs to do. Poor little thing.
The doctors and nurses think that perhaps her acid reflux is causing some of the spells and so they put her on a 5 day trial of Prilosec to see if that will help. If it makes a difference they will keep her on it, if it doesn't then they will stop it as it can inhibit some vitamin absorption. Hopefully it helps.
Her Vitamin D came back low so they have also upped her vitamin supplements to combat that. I've also started an extra Vitamin D supplement in the hopes that that will help her as well.
Today she was having a lot of desats and not recovering as well on her own. She had 7 spells in an hour which is WAY more than is normal for her and to the point where the nurses were getting very concerned. So they called in the resperitory specialist to check on her. After listening to her lungs while the nurses turned up the flow of oxygen she discovered that it was not getting through to her lungs. Her canula was clear so they sucked out her nose. Low and behold they sucked out a ton of junk and she has been doing great ever since! She was just stuffy! I'm so glad it wasn't something worse! So from now on if she starts acting that way again they will first check her nose! Silly baby.
She is so sweet and definitely knows her Mama. It warms my heart to know she does better with me and waits for me and is always eager for more Mommy time :) It's something I really need!
Avalon is doing quite well. Last week she had a bit of a rough week, as did I. I came down with a horrible virus that made me throw up and have more diarrhea than I've ever had in my life. It was horrible. I got so weak that Tyler had to carry me anywhere I needed to go. Luckily it was only bad for two days. I had to stay away from Avalon though and that was so hard. She was a bit sick as well, though nothing like me thank goodness. She didn't eat well for the week and had to be fed mostly through her G Tube.
She has now graduated up to stage 3 feeding! YAY! This means she has 6 out of 8 of her feedings BY MOUTH. Either by breast or bottle. The other two go in her feeding tube. She is still getting used to the change and is often too sleepy to take all 3 bottles during the night but she always takes the breast and does great. I love that she does so well at breastfeeding. I have been able to work it out the last couple of days to feed her three times a day. It's been nice to spend some extra time with her. I hope I can keep doing it until she can come home. She needs to take all 6 feedings completely for 2 days in order to be upped to stage 4 which is all food by mouth. Then she can get her feeding tube out after 2 more days of that!
She still has the nasal canula for oxygen flow. It is set on room air percentage but the flow helps her to remember to breathe. She is still having several ABD spells and several desaturations. She mostly recovers from these on her own but sometimes requires stimulation to get over them. I think it will just take some more time for her brain and body to learn better what it needs to do. Poor little thing.
The doctors and nurses think that perhaps her acid reflux is causing some of the spells and so they put her on a 5 day trial of Prilosec to see if that will help. If it makes a difference they will keep her on it, if it doesn't then they will stop it as it can inhibit some vitamin absorption. Hopefully it helps.
Her Vitamin D came back low so they have also upped her vitamin supplements to combat that. I've also started an extra Vitamin D supplement in the hopes that that will help her as well.
Today she was having a lot of desats and not recovering as well on her own. She had 7 spells in an hour which is WAY more than is normal for her and to the point where the nurses were getting very concerned. So they called in the resperitory specialist to check on her. After listening to her lungs while the nurses turned up the flow of oxygen she discovered that it was not getting through to her lungs. Her canula was clear so they sucked out her nose. Low and behold they sucked out a ton of junk and she has been doing great ever since! She was just stuffy! I'm so glad it wasn't something worse! So from now on if she starts acting that way again they will first check her nose! Silly baby.
She is so sweet and definitely knows her Mama. It warms my heart to know she does better with me and waits for me and is always eager for more Mommy time :) It's something I really need!
Sunday, April 6, 2014
Growing and growing
Avalon is still making milestones :) The last couple of days were a bit hard on me. She got moved from her issolette into an open cot, which is fantastic. She is maintaining her own temperature perfectly. But with the change she has been sooo sleepy. For the last couple of days she wouldn't nurse or take a bottle. But tonight she was finally awake and hungry again and nursed super well thank goodness! I am so glad!
She is also off of the caffeine now. They took her off of it a week earlier than they had initially planned, so that's great. She seems to be doing well so far. She is still having some apnea and bracycardia of course but the spells are all self resolved, which is great. Hopefully they keep decreasing. I just can't wait to have her home with us! I have to keep reminding myself one day at a time, one day at a time, one day at a time.
She is also off of the caffeine now. They took her off of it a week earlier than they had initially planned, so that's great. She seems to be doing well so far. She is still having some apnea and bracycardia of course but the spells are all self resolved, which is great. Hopefully they keep decreasing. I just can't wait to have her home with us! I have to keep reminding myself one day at a time, one day at a time, one day at a time.
Wednesday, April 2, 2014
Slowly but surely
Avalon continues to make progress. I find myself becoming very impatient and have to remind myself that she is still so little and still has a ways to go before she can come home and that she is doing so much better than anyone expected.
She is up to full amount on her feeds. She has 4 tube feeds and 4 oral feeds a day. Two of those are breastfeeding and two are bottle. I wish I could nurse her every single time, but it's just really not possible to drive over there that much and to leave my other girls. I'm glad she is at least getting only my milk.
Exclusively pumping has been interesting. I'm so grateful that I already knew how to pump and the mechanics of it and how to have it be the most productive. I'm currently getting at very least 2 ounces per side but typically 2.5-3 per side. I'm so grateful to be blessed with a lot of milk. It's such a huge deal for Avalon to get it. The NICU staff has had to start freezing all I bring in because there's too much haha. I cannot wait until I get to feed Avalon exclusively and not pump any more. I am also so grateful that my insurance has covered the cost of a hospital pump rental for 2 months which will get us through her NICU stay. It makes a huge difference.
I do feel a bit like a zombie. I pump every 2 hours during the day and every 3 at night, with one 4 hour stretch. It takes me a good 30 minutes each time so I'm definitely not getting as much sleep. But it's completely worth it. I've never considered for the slightest moment not doing it. To me there is no choice.
Avalon is still having a few apnea and bracycardia spells each day. They are decreasing overall since birth, but still there. I hope she grows out of them very quickly.
She absolutely loves breastfeeding and is always so content after I feed her. It melts my heart. When I talk to her she tries so hard to open her eyes and look at me, even if she's too tired to do so. When she is alert she just stares and stares at me. I love getting to snuggle her and talk to her and kiss her little head. She responds to me SO much that it just fills my heart with joy and shows me what a huge miracle being a mother is. And what a miracle this little girl is that I've been given. She makes our family feel complete and whole. It breaks my heart that her sisters have not been able to see her. Since it is RSV season they are not allowed in the NICU. I can only hope that Avalon gets to come home soon and be with them.
The next goal with Avalon is to have the IV out. Hopefully within 2 days it will be gone. Probably no longer than 3. And once that is gone we can start dressing her (I won't do too much because it's not really necessary at this point). Then we start working on weaning her off the temperature controlled issolette and having her maintain her own temperature. Once she does that she can be in an open bed. Those are the most immediate goals for now and what I will concentrate on.
I'm still working on crocheting her a blanket. It helps keep me calm and sane and pass the time. My girls help a lot with that too. Oh how grateful I am for them and their snuggles!
She is up to full amount on her feeds. She has 4 tube feeds and 4 oral feeds a day. Two of those are breastfeeding and two are bottle. I wish I could nurse her every single time, but it's just really not possible to drive over there that much and to leave my other girls. I'm glad she is at least getting only my milk.
Exclusively pumping has been interesting. I'm so grateful that I already knew how to pump and the mechanics of it and how to have it be the most productive. I'm currently getting at very least 2 ounces per side but typically 2.5-3 per side. I'm so grateful to be blessed with a lot of milk. It's such a huge deal for Avalon to get it. The NICU staff has had to start freezing all I bring in because there's too much haha. I cannot wait until I get to feed Avalon exclusively and not pump any more. I am also so grateful that my insurance has covered the cost of a hospital pump rental for 2 months which will get us through her NICU stay. It makes a huge difference.
I do feel a bit like a zombie. I pump every 2 hours during the day and every 3 at night, with one 4 hour stretch. It takes me a good 30 minutes each time so I'm definitely not getting as much sleep. But it's completely worth it. I've never considered for the slightest moment not doing it. To me there is no choice.
Avalon is still having a few apnea and bracycardia spells each day. They are decreasing overall since birth, but still there. I hope she grows out of them very quickly.
She absolutely loves breastfeeding and is always so content after I feed her. It melts my heart. When I talk to her she tries so hard to open her eyes and look at me, even if she's too tired to do so. When she is alert she just stares and stares at me. I love getting to snuggle her and talk to her and kiss her little head. She responds to me SO much that it just fills my heart with joy and shows me what a huge miracle being a mother is. And what a miracle this little girl is that I've been given. She makes our family feel complete and whole. It breaks my heart that her sisters have not been able to see her. Since it is RSV season they are not allowed in the NICU. I can only hope that Avalon gets to come home soon and be with them.
The next goal with Avalon is to have the IV out. Hopefully within 2 days it will be gone. Probably no longer than 3. And once that is gone we can start dressing her (I won't do too much because it's not really necessary at this point). Then we start working on weaning her off the temperature controlled issolette and having her maintain her own temperature. Once she does that she can be in an open bed. Those are the most immediate goals for now and what I will concentrate on.
I'm still working on crocheting her a blanket. It helps keep me calm and sane and pass the time. My girls help a lot with that too. Oh how grateful I am for them and their snuggles!
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