My first thought today is how frustrated I am with IV's! I'm getting sick of them, they're awful torture on a newborn baby. Our sweet baby doll has almost ran out of good veins, literally. Every time an IV goes bad and they have to do a new one I want to cry. I hold her hand and her binki in her mouth the whole time while I try to stay strong for her and whisper in her ear how much I love her and how sorry I am. She has had one IV in her head, once in each hand, one inside her right elbow, 2 inside her left elbow, once in her left foot and 2 in her right foot. They try for a vein in her hand every time, I have to tell them to stop because I've watched the previous IV team fail, there's not one in her hands big enough any more. I'm tired of watching them poke an IV needle into her and then realize they missed or the vein is too small after all, then they pull it out of her and try again elsewhere, making her cry yet again. It's been tough. They've pricked her heels for blood over 8 times per foot, her heels are covered in scabs :o(. They don't have diapers that fit her either, it's Preemie or Size 1 around here, the Preemies were OK the first day we were here but as of Wednesday she has officially outgrown them. The Size 1's are too big and they have been rubbing on her belly button making it irritated and bleed, I'm afraid it's going to get infected or that the umbilical will get ripped out instead of falling out on it's own :o(. I had to have Daddy bring all the newborn diapers we had at home down with him when he came back last night.
One of my brothers stopped by to visit yesterday on his way home. It was nice to see him. Between 7:00pm and 8:00pm they kick all parents out of the PICU for shift change and I think they make rounds as well, but mostly I think it's to force us to leave our kids rooms for a minute to gain better perspective and move around a bit. My brother showed up right about 7:00pm, Daddy was still not back yet from being home for a little bit so I was worried about spending that hour alone knowing nobody was with my baby girl. It was great that he showed up at that time, he and I walked downstairs and outside where we sat on the benches away from the smell and the suffocating feeling and we just talked, about Miss K, about family, about nonsense stuff. It was good to get out and be away with someone to talk to. I'm so grateful he cares enough to take the time to stop and visit. I feel bad because when we did get to come into Miss K's "room" he was exposed to what our days are really like instead of a calm moment where he could just hold her and get to know her for a minute or two. He came in with me just in time to hear she needed a new IV and the IV team was called. It was also time to feed her so I shoved him over to the bassinet with her binky and told him to console her and hold her hand while the nurse took her vitals so I could pump, I think he was kind of freaked out about it all and didn't know quite what to do. The nurse finished her exam and then I had him hold her while we waited for the IV team to show up. It's so awkward to hold her with all the cords, I think he was a little uncomfortable about it all. Then the IV team came and my poor little brother sat in the chair and tried not to watch as they tried for vein after vein before finding an OK one to use. I could tell he didn't like it, I almost thought he might pass out, cry, or leave the room, it's really not a pretty thing to watch. Then he had to endure the embarrassing part of brother being in the room with his sister nursing her baby for 20 minutes, lol, both my brothers have a problem with this even though I'm fully covered, they just have that modest shy personality where just knowing what's going on behind the nursing cover is enough to make them uncomfortable ;o). He got to hold her for a few more minutes after she was fed and then he left to finish his trip home.
Miss K had a pretty OK night. She spent the whole night going in and out of SVT but she's not doing the whole in one minute out the next thing so much any more. She'll go into SVT but only for a second then come out of it completely for a little while or she'll go into it and bounce back and forth for about 5-10 minutes before coming out of it completely. It's good to see some progress. We've noticed that the SVT doesn't come when she's calm and still but when she's disturbed for whatever reason it tends to come back, mostly when she's being poked and prodded, or when she's crying and the biggest thing that's bringing her into SVT is breastfeeding. Everything is pretty much normal newborn activity that's putting her into it. We've questioned putting her on a bottle to see if that makes a difference in her feeding but we really don't think it will, breastfeeding or a bottle would be the same in my opinion, I doubt it's the position or anything like that, I'm pretty sure it's the beginning of eating when every baby sort of holds their breath for a second as they get started. But I am not opposed to trying it, as long as my baby is getting my milk I don't care how she's getting it. I don't know for sure what we'll do but we may try introducing a bottle today??
The Cardiology team came in this morning and spoke to us, they're impressed with her progress on this drug. It's taken a little longer than they hoped, and a higher dose than they hoped but they said it's definitely working and it's the correct drug to have her on, now we're down to working out what dose she needs to stay out of SVT completely, once they get that figured out with the IV drip they'll wean her onto the correct dose of oral and she will be able to leave PICU to a normal room and stay for observation for about 48 hours before they release her to go home.
So it sounds like we're on the home stretch, FINALLY!
Side note: Miss K started a bad trend. Wednesday night her Cardiologist came in to talk a minute and told us another one week old baby had just been admitted with SVT, then he came by at 6:00am and told us 2 more one week old's had been admitted through the night. So now with Miss K they have 4 one week old SVT patients. Apparently one of them isn't doing so great, unlike Miss K, they've been forced to switch him from medication to medication in a hurry because he's not handling being in SVT well at all. The Dr. said he's got Miss K beat in the race to see who can go through the most medications the fastest. Definitely one blessing I can count in this horrible situation! I'm so grateful, and can't thank Heavenly Father enough for making this so much easier on our little girl than it could be. She's handled it well and they've been able to take it slow figuring out what's best for her, which is much better on her body and her heart. I've been praying for the other 3 babies, hoping they make it through this and that their parents are OK through it all. It's not fun and I think it's horrible that anyone has to go through it.
More updates to come as we progress through this...
12.27.2011
Primary Children's Medical Center 8-18-11
Tuesday, after my last update, Miss K had quite a few more episodes of SVT. Somehow Daddy was the only one able to break her out of it about 3 times before they could consider using ice (See Physical Maneuvers). He's such an awesome Daddy. The first SVT episode she had after Daddy got back to the hospital he leaned over her bassinet and talked really softly and quietly in her ear, pretty much cussing her out and letting her know she had to come out of it on her own, his own little Daddy talk, this worked awesome, she came out of SVT without any intervention. The second and third times that she went into SVT Daddy blew in her face multiple times to make her catch her breath, I tried doing it as well but for some reason only his breath worked, she came out of SVT on her own again. Then the "Daddy method" as I began to call it quit working and she wouldn't come out of it, we had to resort to the ice suffocation. In case I never explained that yet: They fill a bag with ice and place it over her whole face pretty much smothering her for 5 seconds to make her gasp and hold her breath, thus restarting her heart and hopefully getting out of SVT this is very heartbreaking and scary for a mom to watch, I cried every time. The first ice treatment worked like it had been before, but it took an hour to work. The second time we had to do it twice, then she went into SVT a third time and we tried the ice twice without success, nothing would get her out of it so they brought a team in and gave her a shot of Adenosine, which stops her heart for a split second and makes it restart into normal rhythm, this worked and she was OK for a few minutes then she went right back into SVT. She wouldn't come out of SVT this last time, we tried every method without success so her cardiologist sent her to PICU and put her on an IV drip of a type of beta blocker. We kept her on the oral Propanolol as well. We had a very long and sleepless night Tuesday night trying to get her out of SVT and keep her calm and happy.
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
8-18-11 A New Report:
Miss K has been very frustrating today. We started her on that new medication this morning as I reported before. She only stayed out of SVT for 3 hours then went back in. She then started jumping in and out of it sporadically, literally one minute she would be in it and the next out, for about an hour or two. She got herself out of SVT and stayed out for about half an hour then went back in again and continued with the sporadic in and out again for about another hour. At about 5:00 she came out again and stayed out for another half hour and is currently in and out of it again. We had to up her dose of the Amiodarone drip, it seems to have worked a little bit. They checked her potassium levels earlier today and they were too high so we're currently getting ready to draw more blood, yet again (poor baby!), and have it checked again, it really needs to go down. Her blood pressure is getting a little low as well, her nurse isn't comfortable with how low it's getting so she's sending in blood for 2 other tests as well to make sure Miss K is still OK. They've just upped her dose of Amiodarone drip yet again, she just won't stop going in and out of SVT. She's been a very sleepy little girl today, this whole in and out of SVT thing is surely wearing her out. She has had a few minutes here and there of awake and alert time but definitely not half as much as she had yesterday. She's slowed down on the eating today as well. And since she's not eating too well today I'm usually left with pumping at least one side after she finishes eating. Since we're going to be here a while I've decided to have Daddy bring some bottles back with him tonight and we're going to start trying to get her to take one well, if she will then I will get a chance to leave the hospital here and there to keep from going insane. On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
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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