That's right world, if you're going to screw me you could at least put on some lipstick!
We are back in the ICU, how exciting. I'm pretty much devastated. We took Callista to the ER on Sunday morning at 2am because she was having trouble breathing due to secretions in her mouth. They suctioned her, took an xray and sent us home (which I did NOT approve of...). By Sunday afternoon, she was sleeping the entire day, hadn't eaten anything, and was dehydrated. We took her back to the ER and this is where it gets really fun.
They stuck her TWELVE times trying to get an IV in, with no success. They ran some blood tests and all came back normal. They decided to transport us to Children's since they couldn't find what was causing the problem. So they load us up in the ambulance and we get about a quarter of the way there and all of the sudden there was a lot of smoke, blinking lights, and spurting oil on the driver's side. And yes, we broke down on the side of the road on the way to Children's. Who the hell else does this happen to besides me? So 20 minutes later after sitting on the side of the highway a new truck comes and we get loaded into that one. The driver decided that we would run hot since we wasted so much time being broken down.
We get to the hospital and they go to unload her and her bed gets freaking stuck in the back of the ambulance. The safety latch won't open and they try for about 5 minutes yanking and pulling to get her out of the truck. Finally one of the EMTs got out a multi tool and pried apart the latch. Again, who else does this happen to? The guy even looked at me and said "This has never happened before....".
Once in the ER, the guy doing the IV tries ONCE and gets it in. So more blood tests and finally some IV fluids for poor dehydrated Callie. They did some more tests and found she had a severe UTI (hello, no symptoms until that very day? wtf?!) and probably some sort of respiratory virus. They admitted her to the Pediatric ICU and that's where we are now. She's got a cPap on to help her breath since she was having periods of apnea. She has two IVs, once of which is in her tummy and looks incredibly painful,. She is hooked up to a million things and to be honest, it scares me to look at her this way. It is frightening looking to see your baby with all these tubes, especially when just two days ago she was the happiest baby in the world with nothing wrong with her. The worst part is, I can't hold her... I don't know where all my bad karma comes from, but is this payback for not having to be on oxygen, assistance, etc. when she was born?
I am in fact having a "woe is me" day. We haven't even been home for two weeks and we're already back in this hell hole. I feel like I've done something wrong. I keep thinking what could I have done or not done that would have prevented this? I'd love to know what the heck we did to deserve all these bad things? I'm supposed to go back to work in another two weeks, but now I don't know if that's going to happen. I may have to take more FMLA time depending on how long this lasts and what she needs because of it. My job is important, but my family is more important and they'll just have to deal with it.
On a positive note (at least I have one...), our benefit Saturday turned out amazing. We had so many awesome people show up, help out, and support us! It was just downright shocking to me how many people came. Callie is truly loved by more people than I could even imagine... Thank you so much for everything, it was just downright spectacular!
Callista
Monday, February 27, 2012
Friday, February 24, 2012
In the Headlines!
One month old and on the front page already (thankfully not for anything criminal lol).
Check us out: http://www.zanesvilletimesrecorder.com/article/20120224/NEWS01/202240301/Caring-Callista-Weekend-benefit-help-family-s-medical-costs
We had our first myelo clinic today and it wasn't nearly as scary as I was expecting. Each person had some pretty good things to say about Callie during her examinations. PT gave us some things to do to work on muscle tone in her neck. Physical medicine did not think she would need casting for her club foot and gave us exercises to do to get it loosened up. They said it was already much looser than the last time they saw her while in the NICU. OT gave us some normal baby things to work on like tracking and reaching. Neuro thought her shunt was looking good still (yay for no revision yet!). I told them I thought her head was a bit fuller than usual so we did an MRI and it showed some minimal increases in pressure. They turned her shunt down from 2.0 to 1.5 to let a little more fluid through. Already I can see a difference in her head and her demeanor. They also showed me the scan from today versus the scan from 2/14 and she is actually starting to have her fluid go where it's supposed to go: the fluid that's inside her brain is supposed to be on the outside of her brain between it and the skull. Since her head was so swollen, there was no room for it, so now her brain is "fluffing" back up and her fluid is going (ever so slightly) back to it's rightful place :) Overall, the day was pretty good. We head back up next Friday to recheck the shunt setting to make sure it's right for her. That visit should be MUCH quicker.
The benefit is tomorrow which is pretty exciting but I'm a little nervous at the same time. Dear Lord, please don't let us have a gazillion pounds of spaghetti left over ;)
Check us out: http://www.zanesvilletimesrecorder.com/article/20120224/NEWS01/202240301/Caring-Callista-Weekend-benefit-help-family-s-medical-costs
We had our first myelo clinic today and it wasn't nearly as scary as I was expecting. Each person had some pretty good things to say about Callie during her examinations. PT gave us some things to do to work on muscle tone in her neck. Physical medicine did not think she would need casting for her club foot and gave us exercises to do to get it loosened up. They said it was already much looser than the last time they saw her while in the NICU. OT gave us some normal baby things to work on like tracking and reaching. Neuro thought her shunt was looking good still (yay for no revision yet!). I told them I thought her head was a bit fuller than usual so we did an MRI and it showed some minimal increases in pressure. They turned her shunt down from 2.0 to 1.5 to let a little more fluid through. Already I can see a difference in her head and her demeanor. They also showed me the scan from today versus the scan from 2/14 and she is actually starting to have her fluid go where it's supposed to go: the fluid that's inside her brain is supposed to be on the outside of her brain between it and the skull. Since her head was so swollen, there was no room for it, so now her brain is "fluffing" back up and her fluid is going (ever so slightly) back to it's rightful place :) Overall, the day was pretty good. We head back up next Friday to recheck the shunt setting to make sure it's right for her. That visit should be MUCH quicker.
The benefit is tomorrow which is pretty exciting but I'm a little nervous at the same time. Dear Lord, please don't let us have a gazillion pounds of spaghetti left over ;)
Friday, February 17, 2012
Home!
We had the best Valentine's Day ever. We were finally able to bring our baby girl home after three weeks in the NICU.
Last Saturday, we were told by a nurse practitioner she was hoping to get us home in the next two weeks. That timeline was pretty rough for me to hear because my maternity leave would be over by then. But then something wonderful happened and the doctors who did rounds switched staffing and we had a new doctor. The first thing he asked was why she still had her feeding tube in. After a few excuses were given, he told them to take it out. Callista ate between 50-60 ml at each feeding for 24 hours. We were then told we could go home but no earlier than Wednesday (much better timeline). So we brought our car seat on Tuesday so the car seat test could be done in case we did get to go home on Wednesday. The doctor stopped by and informed us that we could go home that evening if we wanted. Well YES we wanted to! And so without being prepared what so ever, we got her car seat test done, our CPR class completed, and had everyone and their brother stop by to finish "teaching" (nutrition, etc). And by 8:00pm on Valentine's Day, we loaded up our baby and headed home for the first time. Wow, that was such a good feeling!
I'm so thrilled I can finally introduce my Callista to all of my family and friends. At this point, I am the very anal mom who makes everyone wash their hands and use hand sanitizer before touching or holding her. Hey, we worked so hard to get her here and we've all been through so much, it's within my parental rights I think ;) Everyone asks me if I'm getting any rest and I happily reply "no I'm not". Why am I happy about this? Because now her daddy and I are the ones taking care of her, not some random nurse who doesn't know her or doesn't take their time with her. I'm so happy to be getting up at 3am with the love of my life after all this time.
We had our first pediatrician appointment yesterday and we were happy with the results. The doctor said he was really impressed with her range of movements and told us we obviously did something right to do what we did. He gave us a few things to do for her legs to help her build some more tone in her legs and to help her feet flexes (I don't know if that's a word?). He also told us to just feed her whatever she wants for now, and she'll build up her own tolerance to bigger feeds as she gets older. Which makes me feel better since Children's Hospital had us paranoid that she was going to starve to death if she didn't eat 60 ml every time, all the time.
As for now, we have a lot of appointments in the next few weeks with Help Me Grow, BCMH, her evaluation team, neuro, audiology, and our first Myelo clinic (nervous about that one...). We know we still have a lot to go through, but right now, her "abilities" are the least of my worries, because I have a beautiful little girl who needs exactly what every other infant needs: to be fed, changed, and cuddled profusely.
Please share with friends and family that Callista's benefit dinner is next Saturday, February 25th. We appreciate the sharing and hope to have a great turn out. Love you all!
Last Saturday, we were told by a nurse practitioner she was hoping to get us home in the next two weeks. That timeline was pretty rough for me to hear because my maternity leave would be over by then. But then something wonderful happened and the doctors who did rounds switched staffing and we had a new doctor. The first thing he asked was why she still had her feeding tube in. After a few excuses were given, he told them to take it out. Callista ate between 50-60 ml at each feeding for 24 hours. We were then told we could go home but no earlier than Wednesday (much better timeline). So we brought our car seat on Tuesday so the car seat test could be done in case we did get to go home on Wednesday. The doctor stopped by and informed us that we could go home that evening if we wanted. Well YES we wanted to! And so without being prepared what so ever, we got her car seat test done, our CPR class completed, and had everyone and their brother stop by to finish "teaching" (nutrition, etc). And by 8:00pm on Valentine's Day, we loaded up our baby and headed home for the first time. Wow, that was such a good feeling!
I'm so thrilled I can finally introduce my Callista to all of my family and friends. At this point, I am the very anal mom who makes everyone wash their hands and use hand sanitizer before touching or holding her. Hey, we worked so hard to get her here and we've all been through so much, it's within my parental rights I think ;) Everyone asks me if I'm getting any rest and I happily reply "no I'm not". Why am I happy about this? Because now her daddy and I are the ones taking care of her, not some random nurse who doesn't know her or doesn't take their time with her. I'm so happy to be getting up at 3am with the love of my life after all this time.
We had our first pediatrician appointment yesterday and we were happy with the results. The doctor said he was really impressed with her range of movements and told us we obviously did something right to do what we did. He gave us a few things to do for her legs to help her build some more tone in her legs and to help her feet flexes (I don't know if that's a word?). He also told us to just feed her whatever she wants for now, and she'll build up her own tolerance to bigger feeds as she gets older. Which makes me feel better since Children's Hospital had us paranoid that she was going to starve to death if she didn't eat 60 ml every time, all the time.
As for now, we have a lot of appointments in the next few weeks with Help Me Grow, BCMH, her evaluation team, neuro, audiology, and our first Myelo clinic (nervous about that one...). We know we still have a lot to go through, but right now, her "abilities" are the least of my worries, because I have a beautiful little girl who needs exactly what every other infant needs: to be fed, changed, and cuddled profusely.
Please share with friends and family that Callista's benefit dinner is next Saturday, February 25th. We appreciate the sharing and hope to have a great turn out. Love you all!
Friday, February 10, 2012
Quick Update
I feel like there's been no time to update. I'd say I've been busy, but to be honest, it's not busy at all. Just a lot of traveling back and forth to Columbus and hours of sitting in the NICU with our beautiful little girl. Already I'm two weeks into my maternity leave and I feel like every day there is wasted and I'm getting closer to going back to work. I feel like it's seriously cutting into the quality time I'm supposed to have with our new family member.
We've been in the NICU for a little over two weeks now and the only thing we are waiting on is for Callista to consistently eat all of her bottles. She eats for us almost every time. Unfortunately, she does not do so for many of the nurses. Casey and I try to be there as often as we can so we can be the ones to feed her. She has a feeding tube in her nose right now, and my feeling toward this is that it looks way too inviting. Callie is an extremely slow eater. She finishes her bottle, but takes her entire thirty minutes to eat. It takes a lot of patience during feedings and although I'm not there, I suspect that after 10 or 15 minutes, some of the nurses just give up and take the easy (and quick) way and just put it down the tube. And if this continues to happen, we're NEVER getting out of there!
I brought up my concerns today and they came up with the idea that we will spend the night with her tomorrow evening in our own little room. They'll take the tube out and for 24 hours, we will do all of her care and see how she does. If she does well, then we actually have a chance at discharge. I'm glad I voiced my frustration today, otherwise we'd still be stuck in the same situation for lord only knows how much longer.
And just some random info. The blood pockets they saw in her head are still there but haven't expanded or changed, so the neuro isn't concerned. Her shunt looks better each and every day and so far we've avoided the revision that we thought for sure was coming. She'll get one more MRI before we are discharged to check her head pressure and the setting won't be adjusted until she shows symptoms of not being able to stand the pressure. Ortho was worthless in their report so no news there. We are only cathing every 12 hours now instead of every 8 (woo hoo!). And we met with the myelo coordinator a few days ago so that's taken care of as well. All that is left is to get this feeding thing over with and bring baby girl home.
Wish us luck!!!!
We've been in the NICU for a little over two weeks now and the only thing we are waiting on is for Callista to consistently eat all of her bottles. She eats for us almost every time. Unfortunately, she does not do so for many of the nurses. Casey and I try to be there as often as we can so we can be the ones to feed her. She has a feeding tube in her nose right now, and my feeling toward this is that it looks way too inviting. Callie is an extremely slow eater. She finishes her bottle, but takes her entire thirty minutes to eat. It takes a lot of patience during feedings and although I'm not there, I suspect that after 10 or 15 minutes, some of the nurses just give up and take the easy (and quick) way and just put it down the tube. And if this continues to happen, we're NEVER getting out of there!
I brought up my concerns today and they came up with the idea that we will spend the night with her tomorrow evening in our own little room. They'll take the tube out and for 24 hours, we will do all of her care and see how she does. If she does well, then we actually have a chance at discharge. I'm glad I voiced my frustration today, otherwise we'd still be stuck in the same situation for lord only knows how much longer.
And just some random info. The blood pockets they saw in her head are still there but haven't expanded or changed, so the neuro isn't concerned. Her shunt looks better each and every day and so far we've avoided the revision that we thought for sure was coming. She'll get one more MRI before we are discharged to check her head pressure and the setting won't be adjusted until she shows symptoms of not being able to stand the pressure. Ortho was worthless in their report so no news there. We are only cathing every 12 hours now instead of every 8 (woo hoo!). And we met with the myelo coordinator a few days ago so that's taken care of as well. All that is left is to get this feeding thing over with and bring baby girl home.
Wish us luck!!!!
Saturday, February 4, 2012
Progress... Sort of.
The NICU is extremely daunting. I'm just exhausted from the drive up, the drive back, and even just sitting there with our baby girl. We had hopes of coming home this weekend, but we had a few setbacks over the last week.
For starters, her shunt began to lift up and protrude a lot farther than it should. We were sure on Tuesday that we'd need to go into surgery for a shunt revision. Then the neuro doctor looked at it and decided we would wait because it was starting to look better. Yesterday evening he looked again and thought it was looking even better than before. So every day that it looks better means better odds of not needing the revision.
Yesterday, we were informed that her most recent MRI showed some blood pooled in her head. The doctor thought it was just from her head shrinking and some of the vessels between her brain and skull rupturing. He reassured me it wasn't something to worry about just yet and that they would do another MRI this morning. I know that the doctor wasn't worried, but it's rough to hear there's blood in your baby's head and to not be certain where it came from or if it stopped bleeding, etc. It was a bit of a rough day for me, even though I could clearly see her doing fine and not being affected at all.
This morning, we got the good news that the blood was in fact old blood and was no longer bleeding. Just that little bit of news lifted so much weight off of me today. And the best part is, Callista was so awake and active today. She was looking at everything and even making noises. Her eyes were bright and she was just so happy. Today was an excellent day and it made up for yesterday. And a plus: Casey and I got to give her a bath for the first time today (well, sort of a bath... with these warm wipe thingies).
She still needs to up her feedings and gain some weight before they'll consider letting us go home. She eats at least two whole bottles by herself every day, and gets about 40 ml out of the rest. I cannot wait until we see the home stretch! I'm so ready to bring our gorgeous little one home and get started on actually "living"!
Also, our very generous friends and family are preparing for a benefit for Callista to help us pay some of our mounting medical bills due to the surgery and our weekly ultrasound appointments, as well as me being off work for so long. It's so amazing that there are so many people out there who have been and still are supporting us throughout this whole journey we're on. I'm just so blessed that these acts of kindness are existent, let alone given to me. There are good people out there and I just happen to know them all <3
For starters, her shunt began to lift up and protrude a lot farther than it should. We were sure on Tuesday that we'd need to go into surgery for a shunt revision. Then the neuro doctor looked at it and decided we would wait because it was starting to look better. Yesterday evening he looked again and thought it was looking even better than before. So every day that it looks better means better odds of not needing the revision.
Yesterday, we were informed that her most recent MRI showed some blood pooled in her head. The doctor thought it was just from her head shrinking and some of the vessels between her brain and skull rupturing. He reassured me it wasn't something to worry about just yet and that they would do another MRI this morning. I know that the doctor wasn't worried, but it's rough to hear there's blood in your baby's head and to not be certain where it came from or if it stopped bleeding, etc. It was a bit of a rough day for me, even though I could clearly see her doing fine and not being affected at all.
This morning, we got the good news that the blood was in fact old blood and was no longer bleeding. Just that little bit of news lifted so much weight off of me today. And the best part is, Callista was so awake and active today. She was looking at everything and even making noises. Her eyes were bright and she was just so happy. Today was an excellent day and it made up for yesterday. And a plus: Casey and I got to give her a bath for the first time today (well, sort of a bath... with these warm wipe thingies).
She still needs to up her feedings and gain some weight before they'll consider letting us go home. She eats at least two whole bottles by herself every day, and gets about 40 ml out of the rest. I cannot wait until we see the home stretch! I'm so ready to bring our gorgeous little one home and get started on actually "living"!
Also, our very generous friends and family are preparing for a benefit for Callista to help us pay some of our mounting medical bills due to the surgery and our weekly ultrasound appointments, as well as me being off work for so long. It's so amazing that there are so many people out there who have been and still are supporting us throughout this whole journey we're on. I'm just so blessed that these acts of kindness are existent, let alone given to me. There are good people out there and I just happen to know them all <3
Wednesday, February 1, 2012
A Surprise Birthday!
Welcome to the world Miss Callista Winter Lynch! What a surprise we got last week....
We were scheduled for a c-section on February 8th to begin with. Then with the last post I shared that they wanted to deliver at 34 weeks (January 25th) because of her hydrocephalus being so bad. Then they decided there was no evidence that delivering earlier would make a difference so we were back to February 8th.
I went to my weekly ultrasound and during her 30 minute biophysical profile, Callie didn't move at all, she passed none of her tests, and I was scared to death. Her heart was still beating perfectly, but no movement other than one or two small jiggles that weren't big enough to count. At this point, I'm crying and on the verge of a meltdown, having a 'why me, why us?" moment. They hooked me up to a non stress test monitor and we found out quickly why she wasn't moving. Apparently I was having regular contractions and she was just chilling in there, prepping to make her grand entrance (and now I remember reading somewhere babies stop moving as women progress in labor). Because it's humorous, I'm going to share the conversation between me and the wonderful doctor (LOVE him, he's awesome!)
Doctor Matt: So, you are having a contraction every six spaces...
Me: What does that mean?
Doctor Matt: Well, I think it means we should deliver today.
Me: Today?? When??
Doctor Matt: Um.... In like, an hour. Or less.
Me: Seriously?!
Doctor Matt: Yeah. don't worry, I had a cup of coffee just now, so I'm ready. I always operate better when I've had coffee. Kinda like I always golf better with a few beers. And I rarely get the two confused.
We did in fact deliver in an hour. At 4:53pm, Callista Winter Lynch arrived via c-section. Her little cry was the best sound I've ever heard in my life. Even at 34 weeks, she was breathing room air and needed no assistance. Casey said the first thing he saw was her legs and arms flailing. After they looked her over, her very proud daddy got to hold her. She scored an 8 and a 9 on her apgars which were awesome scores! They finally brought her over close to my face and of course, I cried and laughed at the same time.
We were so lucky that the hospital broke some rules for us so our family members could meet her. Now that she's in the NICU, only parents and grandparents can visit due to flu season restrictions. She's been in the NICU since last Thursday.
Because of her hydrocephalus, she had a shunt placed Friday evening to help drain the fluid. Her VCUG, which looks at her bladder and kidneys showed no reflux, although it did show her bladder has some residual urine. That just means we'll have to cath her, although they've lessened it to every eight hours and it may be moved to every 12 hours if we continue to get such small amounts. They looked at her movement and say she's got good muscle tone in her hamstrings, her toes all flex although they sit higher, and her left foot has a slight club to it (not enough to even notice unless you're looking directly at the bottom of it. Overall, she's so awesome :) And every single SB mommy who told me that pregnancy was the worst part of being diagnosed with SB... YOU WERE SO RIGHT! Now that she is here, my entire pregnancy is behind me and I'm so glad to see it go. She's my everything and SB is the very last thing on my mind when I look into her sweet little face every day!
We may be going through a shunt revision soon as the neuro is watching her shunt placement closely. He didn't like the way it was starting to look after her head shrank, so he's keeping an eye on it for now.
For those of you that have left me messages, sent texts, called, etc. I am definitely not ignoring you, we're just in the NICU all day and we have no cell service until we leave the hospital completely.
We love you so much and are incredibly thankful for everything that you've all done for us!!! <3
We were scheduled for a c-section on February 8th to begin with. Then with the last post I shared that they wanted to deliver at 34 weeks (January 25th) because of her hydrocephalus being so bad. Then they decided there was no evidence that delivering earlier would make a difference so we were back to February 8th.
I went to my weekly ultrasound and during her 30 minute biophysical profile, Callie didn't move at all, she passed none of her tests, and I was scared to death. Her heart was still beating perfectly, but no movement other than one or two small jiggles that weren't big enough to count. At this point, I'm crying and on the verge of a meltdown, having a 'why me, why us?" moment. They hooked me up to a non stress test monitor and we found out quickly why she wasn't moving. Apparently I was having regular contractions and she was just chilling in there, prepping to make her grand entrance (and now I remember reading somewhere babies stop moving as women progress in labor). Because it's humorous, I'm going to share the conversation between me and the wonderful doctor (LOVE him, he's awesome!)
Doctor Matt: So, you are having a contraction every six spaces...
Me: What does that mean?
Doctor Matt: Well, I think it means we should deliver today.
Me: Today?? When??
Doctor Matt: Um.... In like, an hour. Or less.
Me: Seriously?!
Doctor Matt: Yeah. don't worry, I had a cup of coffee just now, so I'm ready. I always operate better when I've had coffee. Kinda like I always golf better with a few beers. And I rarely get the two confused.
We did in fact deliver in an hour. At 4:53pm, Callista Winter Lynch arrived via c-section. Her little cry was the best sound I've ever heard in my life. Even at 34 weeks, she was breathing room air and needed no assistance. Casey said the first thing he saw was her legs and arms flailing. After they looked her over, her very proud daddy got to hold her. She scored an 8 and a 9 on her apgars which were awesome scores! They finally brought her over close to my face and of course, I cried and laughed at the same time.
We were so lucky that the hospital broke some rules for us so our family members could meet her. Now that she's in the NICU, only parents and grandparents can visit due to flu season restrictions. She's been in the NICU since last Thursday.
Because of her hydrocephalus, she had a shunt placed Friday evening to help drain the fluid. Her VCUG, which looks at her bladder and kidneys showed no reflux, although it did show her bladder has some residual urine. That just means we'll have to cath her, although they've lessened it to every eight hours and it may be moved to every 12 hours if we continue to get such small amounts. They looked at her movement and say she's got good muscle tone in her hamstrings, her toes all flex although they sit higher, and her left foot has a slight club to it (not enough to even notice unless you're looking directly at the bottom of it. Overall, she's so awesome :) And every single SB mommy who told me that pregnancy was the worst part of being diagnosed with SB... YOU WERE SO RIGHT! Now that she is here, my entire pregnancy is behind me and I'm so glad to see it go. She's my everything and SB is the very last thing on my mind when I look into her sweet little face every day!
We may be going through a shunt revision soon as the neuro is watching her shunt placement closely. He didn't like the way it was starting to look after her head shrank, so he's keeping an eye on it for now.
For those of you that have left me messages, sent texts, called, etc. I am definitely not ignoring you, we're just in the NICU all day and we have no cell service until we leave the hospital completely.
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