This past weekend, February 3rd, 2013, Miss K welcomed a new baby brother :o). We'll call him Little D here :o). I was so concerned about his heart health! I was terrified of having another SVT baby. I was sure to tell the Labor and Delivery nurse about Miss K's condition and I asked that Little D be watched closely once he was here. The nursing staff at our hospital was beyond awesome about this! The minute Little D was born they did a Pulse Ox test on him and thoroughly listened to his heart and lungs. He was perfect :o). Since I deliver my babies via c-section our hospital stays are 3-4 days long so we were in the hospital for a while. Through our stay the nursing staff was sure to take Little D to the nursery every 12 hours for a thorough workup, they did a pulse ox test every 12 hours and when the on call pediatrician assigned to Little D came in every morning the nursing staff had him listen to Little D's heart. It made me feel so reassured knowing the hospital staff took me quite seriously when I voiced my concerns and they were wonderful making sure Little D's heart really was OK. It has been an adjustment realizing we can let this little guy cry and get upset lol, at first I was way too quick to make the crying stop for fear of his heart. And yes, I have been paranoid enough to put my ear to Little D's chest at least twice a day, especially after a real good crying fit or a very long stretch of sleeping without much movement, to make sure his little heart is beating normal and steady. I don't think I'll ever get over this paranoia.
Thus far our new little guy is 100% healthy and fine :o). And Miss K absolutely loves him. She is constantly giving him hugs and kisses and asking where the baby is when she can't seem to find him herself. Big Brother also loves the new baby, he is excited to have a new playmate and keeps telling us he can't wait for Little D to be big enough to play with toys with him.
I had to be brave this past week and leave Miss K and Big Brother with Grandma and Grandpa while we welcomed our new little one. I stressed the whole time and for good reason, lol. The one and only time we did not call Grandma and remind her to give Miss K her medications Grandma forgot to do so and Miss K was over 3 hours off of her medication schedule. We learned our lesson, just because Grandma gets exasperated with us for calling to remind her and every time without fail has already given the medications does not mean that she will not forget eventually ;o). But other than that slight mistake, that Grandma learned from big time because she then had to stay awake until midnight to give Miss K her bedtime dose and neither of them were too happy about it lol, Miss K and her grandparents and Big Brother did great :o). No SVT episodes, we're actually past the 1 month mark since the last episode :o). I feel the Digoxin is actually working better than the Amiodarone was and I am happy we made the decision to try it out :o).
I called the Cardiologist yesterday and made Miss K's 6 month follow up appointment. It feels like it's been ages since we last saw her EP Cardiologist! I'm loving the long stretch between appointments, it makes me feel like things are going to go to a more normal pace for us now without having to see the Cardiologist every 2 months :o).
Showing posts with label Pulse Ox. Show all posts
Showing posts with label Pulse Ox. Show all posts
2.09.2013
12.17.2012
It's been quiet with Miss K :o)
We've been having a great past few weeks! I hope I don't jinx it, *knock on wood*!
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
11.30.2012
Newborn Heart Defect Screen Awareness Day
I had big plans to post something new about today all day long to get the word out there but with 2 busy kids this was put on the back burner lol. So, since we're already 1/2 way through the day I'll stick to just one post.
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
11.13.2012
Miss K Update
Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back. I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.
And the verdict is...
Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.
The conversation was a bit discouraging and brought a lot of questions to mind.
The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.
IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP. She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her. The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before. They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.
I have cried over this for a few days. I'm trying to be hopeful the Digoxin will work, I really want it to work. But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.
The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me. He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more. I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?
The bills alone are terrifying to me. If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely. But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.
Having a 3 year old son at home and being 7 months pregnant is also terrifying. I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones. We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable. Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.
And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl. There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay. They will not get her to stay in a bed for any amount of time other than sleeping. She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital. All I can see is stress. And tears.
We can use all the prayers we can get that we can avoid the hospitalization option!!!! I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."
On a bit of a lighter note. Daddy and I have been in search of a good, reliable Pulse Ox device to purchase. We have not had much trouble finding them but we have had trouble finding a good price that fits our budget. The ones that are most affordable are not as reliable with pediatric patients as we need it to be. It took us over a year to finally decide to break down and purchase one. We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more. But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two. Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter. A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe. Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.
And the verdict is...
Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.
The conversation was a bit discouraging and brought a lot of questions to mind.
The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.
IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP. She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her. The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before. They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.
I have cried over this for a few days. I'm trying to be hopeful the Digoxin will work, I really want it to work. But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.
The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me. He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more. I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?
The bills alone are terrifying to me. If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely. But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.
Having a 3 year old son at home and being 7 months pregnant is also terrifying. I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones. We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable. Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.
And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl. There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay. They will not get her to stay in a bed for any amount of time other than sleeping. She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital. All I can see is stress. And tears.
We can use all the prayers we can get that we can avoid the hospitalization option!!!! I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."
On a bit of a lighter note. Daddy and I have been in search of a good, reliable Pulse Ox device to purchase. We have not had much trouble finding them but we have had trouble finding a good price that fits our budget. The ones that are most affordable are not as reliable with pediatric patients as we need it to be. It took us over a year to finally decide to break down and purchase one. We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more. But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two. Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter. A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe. Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.
6.25.2012
Cora's Story
I was just directed to this blog by some other Congenital Heart Defect mom's on Facebook that I follow. It is heartbreaking. There are no other words for it. I hope this story on her blog is enough to make everyone see how common CHD's are, and how deadly they can be if not detected. Please read it, it's short and only takes a few minutes to know her whole story. It's important.
I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.
I also have quite a few friends and family who know our story and still don't believe it's such a big deal. I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is. I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now. I cannot imagine life without Miss K. Every day I think about Miss K's first week of life. Every day I read at least one new story (new to me anyway) about a CHD child. Every day I am amazed at how clueless I was about CHD's before Miss K.
This could happen to anyone. It does happen to 1 in 100 families. It is common. It can be deadly. Please educate yourselves. Be prepared. Know the signs and symptoms. And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way. It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth. Too many babies are sent home with an undetected CHD.
I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy. Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes. My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses. It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers. If, IF, there is anything wrong with your baby's heart this should show some sign. I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.
Ok, here is Cora's Story. Be prepared, you will cry, especially if you are a parent or parent to be.
I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.
I also have quite a few friends and family who know our story and still don't believe it's such a big deal. I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is. I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now. I cannot imagine life without Miss K. Every day I think about Miss K's first week of life. Every day I read at least one new story (new to me anyway) about a CHD child. Every day I am amazed at how clueless I was about CHD's before Miss K.
This could happen to anyone. It does happen to 1 in 100 families. It is common. It can be deadly. Please educate yourselves. Be prepared. Know the signs and symptoms. And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way. It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth. Too many babies are sent home with an undetected CHD.
I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy. Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes. My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses. It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers. If, IF, there is anything wrong with your baby's heart this should show some sign. I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.
Ok, here is Cora's Story. Be prepared, you will cry, especially if you are a parent or parent to be.
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