Just shy of turning 5 months old Miss K is doing quite well! Still no SVT episodes, YAY! We're still giving her 1.5 ML Propanolol every 8 hours and 6 ML Amiodarone once daily.
New issues? I'm not quite sure. Yesterday I noticed her sweating while eating, something she has done before once or twice since birth, both those times I'm almost sure she has been congested. She got pretty bad Fall Allergies this past fall season, something she gets from her Mommy no doubt, Fall Allergies get me every year without fail, it was during this period that I first noticed her sweating while eating. This last time I noticed it she has been congested due to a small Winter Cold, she's not sick per say just "stuffy" with a runny eye. Definitely no fever or cough and not acting miserable other than difficulty breathing as well as she'd like to. So, I'm not sure what to do. I've debated contacting her Cardiologist about it, maybe even her Pediatrician just to ask him if congestion could be the culprit. My "mommy instincts" tell me she's fine but I'm still paranoid. I know if it were my perfectly healthy son doing this I would just shrug it off and watch him for a few days/weeks to see if it happened again. I'll keep you updated on my decision.
Newest "trick": Miss K has learned how to forcibly spit out her medications. Yes, that's right FORCIBLY, the past few doses I've ended up "wearing" more of her medication on my face than she has ingested. I'm not quite sure what to do. We've tried quite a lot of things to make medication dosing easier and less stressful for both of us but what can I do when she's spitting it back into my face? We'll be trying yet another method that a cousin of mine suggested: Try this secret for giving medicine to veteran spitters (be sure you have the medicine within reach and ready to go before you start this procedure): Cradle baby's head in the crook of your arm. With the same hand, encircle baby's cheek and use your middle or index finger to pull out the corner of his mouth, making a pocket in his cheek. With the other hand drop the medicine into this cheek pocket a little at a time. This hold keeps baby's mouth open and his head still. Best of all, the traction on baby's cheek with your finger keeps him from spitting the medicine back out. Maintain the traction until all the medicine has gone down. Not sure it will work but it's definitely worth a try!
Our next Cardiologist appointment is February 7, 2012. We're hoping to take Miss K off the Amiodarone completely and have huge success without it. So I'll update at that time (or if I get any answers about the sweating while feeding before then).
Showing posts with label Birth. Show all posts
Showing posts with label Birth. Show all posts
12.28.2011
Primary Children's Medical Center 8-30-11
I just realized Miss K turned 3 weeks old yesterday, time has really flown! I can't believe we've spent that whole 3 weeks in the hospital, it doesn't even feel like we had those few short days at home, I can barely remember them :o(.
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
12.27.2011
Bad News
Our first day home with Miss K was great, we took her to see her pediatrician for the first time (I deliver my babies out of town so we use an on-call pediatrician at birth and then take our babies to our regular pediatrician in our home town within days of bringing them home) she was doing great and still steadily gaining weight. We updated him on her birth story so he'd know what to be concerned about and what to watch for as she grows. Her heart was beating steady and normal every time we checked her and at her Doctor's check-up.
Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.
Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.
3 Days After Initial Hospital (NICU) Release 8-16-11:
Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.
When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.
It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.
The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.
Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.
We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.
Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.
Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.
3 Days After Initial Hospital (NICU) Release 8-16-11:
Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.
When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.
It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.
The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.
Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.
We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.
The Beginning
Birth 8-8-11:
Our story begins August 8, 2011. Our baby girl (who we'll call Miss K throughout this blog) was due to arrive via scheduled c-section on Wednesday August 10, 2011. No medical reason for c-section, just the simple fact that my first baby was delivered that way when my cervix wouldn't open and I never went into labor. Monday August 8 I went to my last routine check up, everything was great just as it had been the whole pregnancy. I arrived home a few hours later after a some quick last minute shopping before baby arrived. After a short nap with our son I woke up to my water breaking, something I didn't plan on considering I had never experienced it with my first baby. I called my doctor who suggested I head to the hospital as soon as I could. When my hubby got home from work we packed up and headed out, calling my parents on the way so they could meet us there and take our son home with them. We arrived at the hospital at 7:30pm and got all checked in, they did some tests on the fluid leaking to see if it was amniotic, the first test was positive but the second was questionable, while they were debating about the second test my water seriously broke, for sure no question, lol!
When my water broke I had a strong contraction and baby's heartbeat skyrocketed, the nurse came in to give me my IV and noticed it, it was so fast the monitor couldn't keep up with it, it was actually halfing the beats it was so fast. Neither nurse could count it out accurately, they were guessing it was over 200 beats per minute.
The next thing I knew they had the on call OB rushing in to hear the heart beat, he really didn't like it. Within seconds the Anesthesiologist was in my room and they were pumping my IV full of all the necessary stuff for surgery. They wheeled me back to the OR and placed my epidural in there. The OB started prepping me and my own OB barely walked in to help just before they started cutting.
Baby sister was born via C-section at 9:25pm. She cried for us. Then they whisked her off to the NICU. Her heartbeat was still too fast, but it had slowed down a little. While in NICU she started grunting while breathing and her heart rate wouldn't slow. They had to give her Adenosine to slow the heartbeat and then checked her lungs to find that her sacks around the lungs weren't expanding on their own. They had to hook her up to a CPAP machine (a breathing machine that gives the effect of putting your head out the window of a fast moving car, this was to give her lungs the extra boost to inflate like needed). They placed an IV to keep fluids and sugars in her and kept an eye on her.
I got to see the baby for a brief second before they rushed her off. As of right now I have not held her yet. It's been rough for me.
At 12:00am the NICU was able to take the baby off all the machines and tubes, except IV of course, and she did great. As of 6:00am she still hadn't needed to be hooked up again and was breathing on her own just fine. Her heart rate is still a concern though and they have called in a Pediatric Cardiologist to come in for a consult about long term care for her.
We are praying that it's nothing serious and that we will be able to feed her today and take her home when I am released on Friday.
Daddy is having about as hard a time as I am though he gets to go down to the NICU and see her whenever he wants to while I am bedridden and waiting on nurses to get me up and moving enough to go down there. Daddy has held her a few times and seen her quite often without tubes hanging all over her.
I'm sitting here waiting as patiently as possible to get to go down and hold her myself for the first time.
She weighed 5 pounds 12 ounces and is 19 inches long. Quite a tiny little thing for as big as we all thought she was going to be! But she doesn't look scrawny like Roo did, in fact she looks like she does have chunk potential :o). She's adorable with a head full of long, dark hair. She's a sweetie and the nurses say she doesn't cry much and handles all the poking and prodding very well for a newborn.
Diagnosis 8-11-11:
Miss K is doing much better. We talked to the cardiologist and he said what happened is she has an extra spark in her heart, kind of a tendon or something, that made it beat faster than it should. The Adenosine they gave her last night at birth to slow her heartbeat down broke that spark. It's not a permanent fix though, it's possible she could have a re-occurance and need to go to the ER for the shot again either in the near future or not until she's older. She could very possibly outgrow this by her first birthday and not have to worry about it again, they may have to put her on a daily medication for this until she's a year old but they're not sure yet. There's also a slight possibility she could have it happen again when she's in her teens. So many "if's" here, not really what we want to hear. But right now she's been given a temporary bill of good health and is doing great. I have been breast feeding her today, she's doing great, we've had 2 great feedings and the nursing staff is impressed with her. They are going to remove her IV in the next few hours because her hand is swelling up from it and instead of placing another one they think she's great to go without so that's awesome news :o). We will be given training on how to check her pulse and heartbeat at home and have been instructed to check it at least twice a day during diaper changes from here on out. They have been awesome to notify our pediatrician of these issues and saved me the trouble of having to remember everything and repeat it.
We're excited to say we most likely will be bringing her home with us when I get to leave Friday morning. Keep us in your prayers.
Our story begins August 8, 2011. Our baby girl (who we'll call Miss K throughout this blog) was due to arrive via scheduled c-section on Wednesday August 10, 2011. No medical reason for c-section, just the simple fact that my first baby was delivered that way when my cervix wouldn't open and I never went into labor. Monday August 8 I went to my last routine check up, everything was great just as it had been the whole pregnancy. I arrived home a few hours later after a some quick last minute shopping before baby arrived. After a short nap with our son I woke up to my water breaking, something I didn't plan on considering I had never experienced it with my first baby. I called my doctor who suggested I head to the hospital as soon as I could. When my hubby got home from work we packed up and headed out, calling my parents on the way so they could meet us there and take our son home with them. We arrived at the hospital at 7:30pm and got all checked in, they did some tests on the fluid leaking to see if it was amniotic, the first test was positive but the second was questionable, while they were debating about the second test my water seriously broke, for sure no question, lol!
When my water broke I had a strong contraction and baby's heartbeat skyrocketed, the nurse came in to give me my IV and noticed it, it was so fast the monitor couldn't keep up with it, it was actually halfing the beats it was so fast. Neither nurse could count it out accurately, they were guessing it was over 200 beats per minute.
The next thing I knew they had the on call OB rushing in to hear the heart beat, he really didn't like it. Within seconds the Anesthesiologist was in my room and they were pumping my IV full of all the necessary stuff for surgery. They wheeled me back to the OR and placed my epidural in there. The OB started prepping me and my own OB barely walked in to help just before they started cutting.
Baby sister was born via C-section at 9:25pm. She cried for us. Then they whisked her off to the NICU. Her heartbeat was still too fast, but it had slowed down a little. While in NICU she started grunting while breathing and her heart rate wouldn't slow. They had to give her Adenosine to slow the heartbeat and then checked her lungs to find that her sacks around the lungs weren't expanding on their own. They had to hook her up to a CPAP machine (a breathing machine that gives the effect of putting your head out the window of a fast moving car, this was to give her lungs the extra boost to inflate like needed). They placed an IV to keep fluids and sugars in her and kept an eye on her.
I got to see the baby for a brief second before they rushed her off. As of right now I have not held her yet. It's been rough for me.
At 12:00am the NICU was able to take the baby off all the machines and tubes, except IV of course, and she did great. As of 6:00am she still hadn't needed to be hooked up again and was breathing on her own just fine. Her heart rate is still a concern though and they have called in a Pediatric Cardiologist to come in for a consult about long term care for her.
We are praying that it's nothing serious and that we will be able to feed her today and take her home when I am released on Friday.
Daddy is having about as hard a time as I am though he gets to go down to the NICU and see her whenever he wants to while I am bedridden and waiting on nurses to get me up and moving enough to go down there. Daddy has held her a few times and seen her quite often without tubes hanging all over her.
I'm sitting here waiting as patiently as possible to get to go down and hold her myself for the first time.
She weighed 5 pounds 12 ounces and is 19 inches long. Quite a tiny little thing for as big as we all thought she was going to be! But she doesn't look scrawny like Roo did, in fact she looks like she does have chunk potential :o). She's adorable with a head full of long, dark hair. She's a sweetie and the nurses say she doesn't cry much and handles all the poking and prodding very well for a newborn.
Diagnosis 8-11-11:
We're excited to say we most likely will be bringing her home with us when I get to leave Friday morning. Keep us in your prayers.
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