Saturday, March 1, 2008
Bad news AND a bad day for Cady and me.
I've been keeping this mostly to myself for a couple of days, but I feel it's time to share. We had an absolutely awful day on Thursday.
Cady was seen by a neonatologist for a follow up. (The hospital where she was born has a follow-up clinic where they follow the progress of all babies who spend time in the NICU.) As we are going through the exam, the neonatologist is asking me all the usual questions and he asked me what her neurologist told me. I reported to him that she told me that while she can't say for certain what her future will be like, she is encouraged by her progress so far and she might just be "clumsy." He seemed somewhat surprised by that and said he believed that was a "gross understatement" and asked if anyone had ever mentioned Cerebral Palsy to me. I said they had while she was in the NICU, but not since then. I said, "Why? You think she has it?" He said, "Oh yes."
Now, at first I wasn't too fazed by that. Technically, if you look at it's definition (Cerebral palsy (CP)is an umbrella term encompassing a group of non-progressive,[1] non-contagious condition that cause physical disability in human development. - Wikipedia), she does have it. Her condition isn't going to worsen, is not contagious and her physical development is impaired. However, as we were talking, he really began to upset me. He seemed nearly certain she has CP and came short of giving her an official CP diagnosis. I asked if she would likely have a mild case and, not in these words, he told me while it was possible, it was probably hoping for too much and that her case would likley be too severe to be classified as "mild." He said at this point she should have full head control and the tightness in her arms and legs were of a serious concern to him. Umm...ok...?
We knew this was possible, but considering how well she appears to be doing, I was somewhat shocked and, naturally, very upset. Her PT thinks she is making great strides, her doc thought she looked great at her 6 month check-up and I have noticed some big improvements in her all around. Therefore, I am trying not to put too much weight in what this doctor said. This was only the second time he's seen her and it was just a snapshot. We had woken her up for the exam and so she was tired and getting hungry. He did say he could be wrong and he hoped he was. He said we are doing everything we can for her now so to keep doing what we are doing and come back in 6 months. Even though we are trying to stay positive, I am really having a tough time dealing with this.
If that weren't enough, the day actually got worse after that.
When we got home, it was total chaos. Cady was supposed to have eaten at 11, but we didn't leave the doc's office until almost 1. As soon as we got out to the car, I started her feeding, but when we got home, I paused the pump for a minute so I could bring everyone in the house. Once we were in, everyone was up in arms. Kiefer was screaming and clawing at me for no reason, Callia was bugging me about something, and Cady was crying to get out of her seat. I unbuckled her and in my haste, forgot to check where the extension attached to her button was (we are usually very mindful of it when picking her up and moving her around). As soon as I realized what I did, it was too late. It got caught on the little slits where the seatbelt would go were you to not use a base and ripped right out of her belly. For those of you who don't know, the way the button works is there is a narrow piece with a balloon on the end that you stick in the hole in her belly. Once it is in you, you fill the balloon with water and that is what holds it in place and keeps it from coming out of her belly. The size of the inflated balloon is about that of a quarter. It, in tact, came right out of her belly. Cady didn't skip a beat. I swear she didn't even feel it. She was happy and smiling and, to be honest, I think she enjoyed the few hours it was out.
Oh yes, I said a FEW HOURS.
After it came out, I had to hold my hand over her belly because I didn't want that little bit of formula that she had to leak out. So, one-handed, I try to get everything together to replace it. Kiefer is STILL screaming, as he was tired and hungry, as well, and I just can't do it. Luckily, I knew my sister was in the neighborhood visiting a friend, so I called her and asked her to come by and help me. When she got here, I had her hold her hand on Cady's belly while I got everything together. When I went into the box to get the new button, I found that it was gone. Now, I had opened the package a few weeks ago to use the extension that was in there since we were out of new ones and I needed one. I looked all around for it, but it was nowhere to be found. I figured it had somehow gotten lost since I opened the package.
I call the medical supply company to ask if they can get me a new one. They looked and it was in stock. I taped gauze pads on Cady's belly, left the kids with my sister and drove to get the new one. That took a little more than a half-hour, so all said, it had been just over an hour by the time I tried putting the new one in since it came out. Well, try as we did, Kerri and I could not get the button in. It was too soft and kept slipping all over the place. I call the surgeon's office and they tell me to come in.
So now I have to wake a miserable, sleeping Kiefer to get him in my sister's car. She was going to watch them, but she had to get home to her daughters since her fiance had to go to work. (Oh, and as we were walking out my front door, I found the missing button on the floor.) We get to the doc's office and wait ANOTHER hour and a half to be seen. At this point it's been out for more than 3 hours. And guess what? He can't get it in either. So, the plan of action is to insert a smaller catheter into the hole and increase it in size until we dilate the hole to the size of her button. The first one goes in fine. The second one she whined a bit but it was ok. The third one, which was the same size as the button, wouldn't go in. Becauase they are soft, it kept slipping and sliding. So he goes and gets some harder stick-like catheter that won't move when you pierce it in and he jammed it into the hole. O...M..G. I never, IN MY LIFE, heard any child of mine scream the way this child did. I am usually pretty good at dealing with seeing my kids in pain (like stuff like shots doesn't really bother me), but it was all I could do to not cry. So after he gets that in, he goes to put the button in. She is SCREAMING and wiggling all about. I hold her legs down while looking in the opposite direction. He tries and tries and once he stops, I assume it's in. I look over and not only was he not successful, there is a small pool of blood about the size of a nickel on her belly. He assures me this is normal and we try again. This time I won't look until he tells me it is in, tears welling in my eyes.
After we are done, Cady, who at this point still hasn't eaten since 8 a.m., except for that little bit she got in the car on the way home from the Follow-up Clinic, screams for another 45 minutes before passing out. I felt so bad for her. I gave her some pain reliever once we got home and in the morning, she seemed fine.
Gah!!
Sunday, February 24, 2008
Married to Will Ferrell
Could you imagine what it must be like to be married to Will Ferrell? That guy is SOOO funny. I mean really, really funny. Corey and Callia are watching Elf right now and I nearly spit out my wine when he says, "I'm smiling. Smiling's my favorite!"
Although, I bet getting into an argument would suck. He'd think he's so funny and you'd holler, "What is so funny? Why are you smiling?" and he'd say, "I love smiling. Smiling's my favorite." Would you then laugh and in turn get even madder at him for making you laugh, or would you be able to ignore him? Definitely something to think about.
And if you haven't seen Wedding Crashers, you haven't seen the best of Will Ferrell.
Although, I bet getting into an argument would suck. He'd think he's so funny and you'd holler, "What is so funny? Why are you smiling?" and he'd say, "I love smiling. Smiling's my favorite." Would you then laugh and in turn get even madder at him for making you laugh, or would you be able to ignore him? Definitely something to think about.
And if you haven't seen Wedding Crashers, you haven't seen the best of Will Ferrell.
Friday, February 22, 2008
A little bit about Kiefer Doodle.
I still have a ton of stuff I want to post regarding all Cadence has been through before I feel like I've caught up and can start focusing just on the current life events, but since iVillage is down and I was going to copy and paste a bunch of stuff I posted there (yes, I am too lazy to re-type it all), I figured I'd talk a little about my Dood.
Not a typo. Dood is short for Doodle. As in our little Kiefer Doodle. My precious son. What a fricking pain in the ass that kid is! LOL! But I love him so much (duh.). He got that nickname when he was really young, like about 2 months old, maybe. He always used to cry and cry and cry and drove poor Callia, who was just 2 at the time, nuts. She'd ask why the baby was crying and I say, "He's just being a stinker. He's a little stinker doodle." From there, Stinker Doodle became Kiefer Doodle and before long, just Doodle or even Dood. Since Corey loves to call people names (in an endearing fashion), he picked up on this right away and started using it himself. Now, here we are 17 months later and he even answers to Doodle. Kinda funny, huh? I often wonder if when he's 17. I'll still be calling him Doodle. I bet I will. I also bet he's going to hate it. So, of course, I'll just do it more.
Anyway, that little dood is STILL such a stinker!! I guess some things don't change. When he was a baby he was just whiney and clingy. He hit 1 and settled down a little and was even fun to be around. I soon realized he was a joker and enjoyed making us laugh (my Callia often gets so mad when you laugh at her). Corey loves it when he forms his lips almost like into a kiss, but pushes his lips up into his nose. C thinks this is quite funny and laughs so hard, which in turn gets Kiefer going. They have been known to sit on the couch for weeks at a time doing this.
But then something happened. I cut his hair. OK, cut isn't an appropriate word. I buzzed it off. Because I felt like, that's why! And YES, I know I live in New England and YES, I know it gets cold here in the winter. I just wanted to see what it would look like, OK??? Well, I swear he vowed revenge on me that day because ever since I did that, he has become evil Satan child. He hits, pulls hair, bites and scratches. He throws his food on the floor, refuses to eat and literally follows me around as I clean, messing it all back up again. He won't listen, even though I KNOW he understands me and will not go to bed at night. C and I even had to rearrange the furniture in our room earlier this week to fit the baby's crib in so he doesn't bother her with his nighttime shenanigans.
C and I talked about this at length and have decided it's important to be a little bit more patient and understanding with him. I mean, we've always known life must be a little tough for him being the only boy and booted from baby to middle child before he even turned 1, but even still, we couldn't understand why the same tactics used on Callia weren't working with him. Since he's not the baby, C doesn't think of him as one and tends to expect more from him. So, we are trying harder than ever (we've always tried before) to give him lots of extra special attention and make sure he feels loved and special.
It seems to be working. He's starting to come around and while he still walks behind Callia, who is sitting in a chair minding her own business, and pulls her hair for no reason (I try to hide my laughter because, frankly, it's kinda funny to watch unfold), he's not nearly as sinister as he had been even just a week ago.
I think it's because his hair is starting to grow back in.
Not a typo. Dood is short for Doodle. As in our little Kiefer Doodle. My precious son. What a fricking pain in the ass that kid is! LOL! But I love him so much (duh.). He got that nickname when he was really young, like about 2 months old, maybe. He always used to cry and cry and cry and drove poor Callia, who was just 2 at the time, nuts. She'd ask why the baby was crying and I say, "He's just being a stinker. He's a little stinker doodle." From there, Stinker Doodle became Kiefer Doodle and before long, just Doodle or even Dood. Since Corey loves to call people names (in an endearing fashion), he picked up on this right away and started using it himself. Now, here we are 17 months later and he even answers to Doodle. Kinda funny, huh? I often wonder if when he's 17. I'll still be calling him Doodle. I bet I will. I also bet he's going to hate it. So, of course, I'll just do it more.
Anyway, that little dood is STILL such a stinker!! I guess some things don't change. When he was a baby he was just whiney and clingy. He hit 1 and settled down a little and was even fun to be around. I soon realized he was a joker and enjoyed making us laugh (my Callia often gets so mad when you laugh at her). Corey loves it when he forms his lips almost like into a kiss, but pushes his lips up into his nose. C thinks this is quite funny and laughs so hard, which in turn gets Kiefer going. They have been known to sit on the couch for weeks at a time doing this.
But then something happened. I cut his hair. OK, cut isn't an appropriate word. I buzzed it off. Because I felt like, that's why! And YES, I know I live in New England and YES, I know it gets cold here in the winter. I just wanted to see what it would look like, OK??? Well, I swear he vowed revenge on me that day because ever since I did that, he has become evil Satan child. He hits, pulls hair, bites and scratches. He throws his food on the floor, refuses to eat and literally follows me around as I clean, messing it all back up again. He won't listen, even though I KNOW he understands me and will not go to bed at night. C and I even had to rearrange the furniture in our room earlier this week to fit the baby's crib in so he doesn't bother her with his nighttime shenanigans.
C and I talked about this at length and have decided it's important to be a little bit more patient and understanding with him. I mean, we've always known life must be a little tough for him being the only boy and booted from baby to middle child before he even turned 1, but even still, we couldn't understand why the same tactics used on Callia weren't working with him. Since he's not the baby, C doesn't think of him as one and tends to expect more from him. So, we are trying harder than ever (we've always tried before) to give him lots of extra special attention and make sure he feels loved and special.
It seems to be working. He's starting to come around and while he still walks behind Callia, who is sitting in a chair minding her own business, and pulls her hair for no reason (I try to hide my laughter because, frankly, it's kinda funny to watch unfold), he's not nearly as sinister as he had been even just a week ago.
I think it's because his hair is starting to grow back in.
Hasn't she been through enough?
My poor bug is sick. :( She's had a cold for more than 3 months now and it just doesn't seem to go away. As recently as 3 weeks ago she saw her pediatrician for her 6 month check up and there were no signs of sinus or ear infections.
Well, two nights ago I could hear her wheezing in her crib and when I picked her up, she was really fighting hard to breathe. (This after she threw up all over herself from trying to cough. She doesn't have a very forceful cough, so it gets stuck in her throat and she winds up gagging and vomiting.) I called the doc as soon as the office was open at 9. The girl said, "How far do you live? I have a 9:15." Well, yeah I can be there in 15 minutes - if I don't get anyone dressed!! We took the next appointment - 10:00.
Long story short, her doc wasn't there but the CNP said it sounded like bronchiolitis, sent us home with a nebulizer and an Rx for albuterol and told us to return today to see Dr. B. Of course today, of all days, it had to snow, so I had to drag Cady and Kiefer out this morning (luckily Callia spent the night at my sister's house) in the snow back to the doc's office. He confirmed the bronchiolitis and also said from listening to her lungs, it sounds like pneumonia might be brewing in there. He gave us a prescription for an antibiotic and sent us back out into the snow.
I feel so bad for her! I mean, I know she'll be ok, but this poor kid has been poked and prodded so much already, not to mention fought to breathe the first 12 days of her life, she shouldn't have to deal with this, too. She seems ok, though. Smiling and cooing at times and actually slept through the night last night. Hopefully we caught this early and she doesn't wind up getting worse.
Well, two nights ago I could hear her wheezing in her crib and when I picked her up, she was really fighting hard to breathe. (This after she threw up all over herself from trying to cough. She doesn't have a very forceful cough, so it gets stuck in her throat and she winds up gagging and vomiting.) I called the doc as soon as the office was open at 9. The girl said, "How far do you live? I have a 9:15." Well, yeah I can be there in 15 minutes - if I don't get anyone dressed!! We took the next appointment - 10:00.
Long story short, her doc wasn't there but the CNP said it sounded like bronchiolitis, sent us home with a nebulizer and an Rx for albuterol and told us to return today to see Dr. B. Of course today, of all days, it had to snow, so I had to drag Cady and Kiefer out this morning (luckily Callia spent the night at my sister's house) in the snow back to the doc's office. He confirmed the bronchiolitis and also said from listening to her lungs, it sounds like pneumonia might be brewing in there. He gave us a prescription for an antibiotic and sent us back out into the snow.
I feel so bad for her! I mean, I know she'll be ok, but this poor kid has been poked and prodded so much already, not to mention fought to breathe the first 12 days of her life, she shouldn't have to deal with this, too. She seems ok, though. Smiling and cooing at times and actually slept through the night last night. Hopefully we caught this early and she doesn't wind up getting worse.
Thursday, February 21, 2008
The worst news of my life...
The following are excerpts of some posts I put up on one of my mesageboards:
7/26/07
I DID get to hold Cady yesterday for an hour. It was so nice, but still not enough. (Yes, I'm being greedy.) I wanted to touch her skin and let her feel mine, but I had to hold the oxygen tube over her nose the whole time. It was still AWESOME though. :)
I just called and her oxygen is back up to 30-40%. It was down to about 24 yesterday. But they said they tried putting her in the nasal canula last night and she didn't tolerate it too well so they put her back in the hood. I guess that pooped her out so they had to raise her oxygen level. That's ok though. They say sometimes it's two steps forward and one step back, so I guess she digressed a bit. However, she is getting there, just very slowly. Her last x-ray showed some progress, though there is still a bit of meconium in her lungs. Right now it's just a matter of waiting for her to get better.
The biggest thing that has me concerned right now is that they noticed she hasn't been very responsive. They said this could be indicative of some brain damage due to the knot in her cord causing a lack of oxygen to her brain while she was in utero. However, they said that she was fiesty and responsive when she was first born tells them that it is most likely that she is just worn out from fighting so hard to breathe. I am hoping and wishing and praying that that is all. I am an absolute nervous wreck over it.
7/27/07
I don't even know how to type this. I got to the hospital today just as shift change was ending and they let me in the NICU not realizing Cadence was having an echocardiogram. So, after scrubbing in I waited off to the side for the tech to be done. After like 10 minutes, the head neonatologist came over to me and asked if we could talk. She took me to a private room where we were eventually joined by two social workers and another doctor. She basically told me that she, the nurses and the other doctors were all concerned about Cadence's behavior. They said there were two things that specifically raised some red flags: she holds her thumbs inside her hand (not sure exactly what that means or why it's a concern) and when you tap her forehead between her eyes, she should blink and she doesn't. They said it could be any number of things. It could be nothing - that she is still just very sick and out of it. It could be she has an infection like meningitis, although the doc felt this was a very unlikely scenario. It could mean she had some compression on her brain as she was coming out and she broke some blood vessels. This would be a great prognosis as it will resolved itself over time. Or it could be she suffered some brain damage due to the knot in her cord cutting off her oxygen supply.
They said we won't know more until she gets better with her breathing (which is slowly improving). They said anything it could be they are treating her for already (antibiotics) and so they will just wait until she is better to further examine her. They said they will do a CAT scan to look at her brain and a spinal tap to test for meningitis. They also said they will have her evaluated by a pediatric neurologist. They even said they'd have an eye doctor look at her because she might have a problem with her eyesight. They said she can at least see lights as she reacts to lights in her face, but they aren't sure beyond that.
I am sick over this. I got to the hospital with only 45 minutes to visit. By the time they were done talking to me, it was just about time to go. I stopped by her bedside quickly to say hi and then had to go. I couldn't bring myself to go back this evening. I can't eat. I can't sleep. I can't do anything but cry and think of my poor baby and pray she is going to be ok. Corey went there after me and talked to the doctor as well. She told him to reassure me that this was nothing I did or in any way my fault. Rationally, I know that is true, but it doesn't stop me from thinking it was. My heart is broken right now and I don't know how to deal. I look at my other two kids and I find them to be even more of a miracle and a blessing than I did just one week ago, but yet I am too sad to enjoy them.
I admit to not being a very religious person. This is by no means meant to be a religious debate, but just so you know where I stand, I guess the best way to describe myself is a non-denominatioal, non-practicing Christian. I believe in God and his son Jesus Christ, but that's about it. I don't know what form of Christianity I believe in and I haven't bothered to figure it out. Whenever someone here is asking for support, I don't like to lie and say I will be praying for them since I am not the praying type. Instead, I offer my PTs and send out well wishes. Well, let me tell you - praying to God is all I've done the last 10 hours. I have begged, pleaded and bargained for a miracle. I am now asking all of you who believe to do the same. If not, all the support and positive thoughts you can muster up are just as welcomed and appreciated.
7/30/07
First and foremost, I want to say thank you to everyone who responded to my last post in this folder. I don't even have the words (and I am a writer!) to tell you all how heartwarming and humbling it was to read all of those responses and personal e-mails. Your words of prayer, encouragement and support truly did help me get through the last few days. For that, I am immensely grateful. You are all so kind and wonderful and on behalf on myself and my entire family, thank you a million times over.
Ok, now on to my sweet Cadence. I got to the hospital today and was told Cady had her CAT scan a few hours earlier. My stomach turned. I was consumed with anxiety and fear. They told me the attending would be over to talk to me soon. Long story short, I was told Cadence has a small spot on the CAT scan that could be one of two things: a bit of brain damage or a spot where she moved her head during the test. She said once Cady got better, they would have her evaluated by a pediatric neurologist and she would likely have an MRI. She said the part of the brain where they saw the spot is called the caudate nucleus and it is an important part of the brain (I looked it up and found it is the part of the brain that controls learning and memory), but we have two of them. She also told me infant brains are very "plastic" and often times when there's damage to one part, other parts will sort of pick up the slack and take over for the damaged area. She said she would most likely go into Early Intervention and be monitored by a neurologist for at least the first 18 months of her life to see how she is developing. She said while we don't know just what we are dealing with as of yet, she believes we can be "guardedly optimisitic."
ETA: I had only read a few sentences about the caudate nucleus prior to posting this and it seems it is involved with a lot more than just learning and memory (voluntary movement in the brain, body movement and coordination. Also, a malfunction in this part of the brain is believed to be the cause for OCD...sigh). I am just hoping if it IS damaged, it's not going to effect her too greatly and, like the doc said, other parts of her brain will make up for it.
I've been told by another doctor and some of the nurses that Cady has been a bit more alert and responsive and while there is some concern about her muscle tone, it seems to be a bit better than it was. She has an occupational therapist working with her, although I don'tknow how that is going because she was supposed to have her first session earlier this evening and the nurse knew nothing about it when I called at 9. Everyone seems to want to give me reason to have hope, but they just can't be sure yet what we are dealing with. On Saturday when I was visiting with her, I was holding her and she appeared to be looking at me and all around us. One of the drs., the one who made it a point to tell me last week that my baby was "very sick," walked by, looked at Cadence and became very excited. She said, "Oh my gosh! She is looking at you!!" I said, "Yeah, I thought so but I didn't want to get my hopes up if she was just looking in my direction," and the dr. said, "No, no! She is looking at you. She is really looking at you!!" Considering how pessimistic she had been prior, it made me feel really, really good. Then on Sunday, I ran into my midwife and she was surprised to see us there. When I told her what was going on, she told me there were some tests done on the cord blood after she was born that looks for any evidence of where she might've had some lack of oxygen and it all came back normal. That also made us feel better.
As for her breathing, she is slowly getting better. She's in the nasal cannula now and has been since Friday (no more hood). Her resp. rate is still high, but going down. She was taken off the UVC (a small tube that feeds her through her belly button) tonight and put onto an IV for food. The nurse suspects she will start feeding in a couple more days. She had the spinal tap today, but we haven't gotten the results back yet. Also, she is done with the antibiotics (unless the tap shows something there in which case she might stay on them a few more days). Still no word on when she can come home, but I am guessing another week or so.
I am still a nervous wreck, but somewhat more relaxed. I know we are not out of the woods yet, but I do feel much better. Please, if you can spare them, keep the P&PTs coming. They are so, so appreciated. HUGE, HUGE HUGS!!!! <3>
7/26/07
I DID get to hold Cady yesterday for an hour. It was so nice, but still not enough. (Yes, I'm being greedy.) I wanted to touch her skin and let her feel mine, but I had to hold the oxygen tube over her nose the whole time. It was still AWESOME though. :)
I just called and her oxygen is back up to 30-40%. It was down to about 24 yesterday. But they said they tried putting her in the nasal canula last night and she didn't tolerate it too well so they put her back in the hood. I guess that pooped her out so they had to raise her oxygen level. That's ok though. They say sometimes it's two steps forward and one step back, so I guess she digressed a bit. However, she is getting there, just very slowly. Her last x-ray showed some progress, though there is still a bit of meconium in her lungs. Right now it's just a matter of waiting for her to get better.
The biggest thing that has me concerned right now is that they noticed she hasn't been very responsive. They said this could be indicative of some brain damage due to the knot in her cord causing a lack of oxygen to her brain while she was in utero. However, they said that she was fiesty and responsive when she was first born tells them that it is most likely that she is just worn out from fighting so hard to breathe. I am hoping and wishing and praying that that is all. I am an absolute nervous wreck over it.
7/27/07
I don't even know how to type this. I got to the hospital today just as shift change was ending and they let me in the NICU not realizing Cadence was having an echocardiogram. So, after scrubbing in I waited off to the side for the tech to be done. After like 10 minutes, the head neonatologist came over to me and asked if we could talk. She took me to a private room where we were eventually joined by two social workers and another doctor. She basically told me that she, the nurses and the other doctors were all concerned about Cadence's behavior. They said there were two things that specifically raised some red flags: she holds her thumbs inside her hand (not sure exactly what that means or why it's a concern) and when you tap her forehead between her eyes, she should blink and she doesn't. They said it could be any number of things. It could be nothing - that she is still just very sick and out of it. It could be she has an infection like meningitis, although the doc felt this was a very unlikely scenario. It could mean she had some compression on her brain as she was coming out and she broke some blood vessels. This would be a great prognosis as it will resolved itself over time. Or it could be she suffered some brain damage due to the knot in her cord cutting off her oxygen supply.
They said we won't know more until she gets better with her breathing (which is slowly improving). They said anything it could be they are treating her for already (antibiotics) and so they will just wait until she is better to further examine her. They said they will do a CAT scan to look at her brain and a spinal tap to test for meningitis. They also said they will have her evaluated by a pediatric neurologist. They even said they'd have an eye doctor look at her because she might have a problem with her eyesight. They said she can at least see lights as she reacts to lights in her face, but they aren't sure beyond that.
I am sick over this. I got to the hospital with only 45 minutes to visit. By the time they were done talking to me, it was just about time to go. I stopped by her bedside quickly to say hi and then had to go. I couldn't bring myself to go back this evening. I can't eat. I can't sleep. I can't do anything but cry and think of my poor baby and pray she is going to be ok. Corey went there after me and talked to the doctor as well. She told him to reassure me that this was nothing I did or in any way my fault. Rationally, I know that is true, but it doesn't stop me from thinking it was. My heart is broken right now and I don't know how to deal. I look at my other two kids and I find them to be even more of a miracle and a blessing than I did just one week ago, but yet I am too sad to enjoy them.
I admit to not being a very religious person. This is by no means meant to be a religious debate, but just so you know where I stand, I guess the best way to describe myself is a non-denominatioal, non-practicing Christian. I believe in God and his son Jesus Christ, but that's about it. I don't know what form of Christianity I believe in and I haven't bothered to figure it out. Whenever someone here is asking for support, I don't like to lie and say I will be praying for them since I am not the praying type. Instead, I offer my PTs and send out well wishes. Well, let me tell you - praying to God is all I've done the last 10 hours. I have begged, pleaded and bargained for a miracle. I am now asking all of you who believe to do the same. If not, all the support and positive thoughts you can muster up are just as welcomed and appreciated.
7/30/07
First and foremost, I want to say thank you to everyone who responded to my last post in this folder. I don't even have the words (and I am a writer!) to tell you all how heartwarming and humbling it was to read all of those responses and personal e-mails. Your words of prayer, encouragement and support truly did help me get through the last few days. For that, I am immensely grateful. You are all so kind and wonderful and on behalf on myself and my entire family, thank you a million times over.
Ok, now on to my sweet Cadence. I got to the hospital today and was told Cady had her CAT scan a few hours earlier. My stomach turned. I was consumed with anxiety and fear. They told me the attending would be over to talk to me soon. Long story short, I was told Cadence has a small spot on the CAT scan that could be one of two things: a bit of brain damage or a spot where she moved her head during the test. She said once Cady got better, they would have her evaluated by a pediatric neurologist and she would likely have an MRI. She said the part of the brain where they saw the spot is called the caudate nucleus and it is an important part of the brain (I looked it up and found it is the part of the brain that controls learning and memory), but we have two of them. She also told me infant brains are very "plastic" and often times when there's damage to one part, other parts will sort of pick up the slack and take over for the damaged area. She said she would most likely go into Early Intervention and be monitored by a neurologist for at least the first 18 months of her life to see how she is developing. She said while we don't know just what we are dealing with as of yet, she believes we can be "guardedly optimisitic."
ETA: I had only read a few sentences about the caudate nucleus prior to posting this and it seems it is involved with a lot more than just learning and memory (voluntary movement in the brain, body movement and coordination. Also, a malfunction in this part of the brain is believed to be the cause for OCD...sigh). I am just hoping if it IS damaged, it's not going to effect her too greatly and, like the doc said, other parts of her brain will make up for it.
I've been told by another doctor and some of the nurses that Cady has been a bit more alert and responsive and while there is some concern about her muscle tone, it seems to be a bit better than it was. She has an occupational therapist working with her, although I don'tknow how that is going because she was supposed to have her first session earlier this evening and the nurse knew nothing about it when I called at 9. Everyone seems to want to give me reason to have hope, but they just can't be sure yet what we are dealing with. On Saturday when I was visiting with her, I was holding her and she appeared to be looking at me and all around us. One of the drs., the one who made it a point to tell me last week that my baby was "very sick," walked by, looked at Cadence and became very excited. She said, "Oh my gosh! She is looking at you!!" I said, "Yeah, I thought so but I didn't want to get my hopes up if she was just looking in my direction," and the dr. said, "No, no! She is looking at you. She is really looking at you!!" Considering how pessimistic she had been prior, it made me feel really, really good. Then on Sunday, I ran into my midwife and she was surprised to see us there. When I told her what was going on, she told me there were some tests done on the cord blood after she was born that looks for any evidence of where she might've had some lack of oxygen and it all came back normal. That also made us feel better.
As for her breathing, she is slowly getting better. She's in the nasal cannula now and has been since Friday (no more hood). Her resp. rate is still high, but going down. She was taken off the UVC (a small tube that feeds her through her belly button) tonight and put onto an IV for food. The nurse suspects she will start feeding in a couple more days. She had the spinal tap today, but we haven't gotten the results back yet. Also, she is done with the antibiotics (unless the tap shows something there in which case she might stay on them a few more days). Still no word on when she can come home, but I am guessing another week or so.
I am still a nervous wreck, but somewhat more relaxed. I know we are not out of the woods yet, but I do feel much better. Please, if you can spare them, keep the P&PTs coming. They are so, so appreciated. HUGE, HUGE HUGS!!!! <3>
Wednesday, February 20, 2008
The story of Cady's birth
Cadence Ann, born 7/20/07 at 10:14 p.m. 8 lbs., 1 oz.
On July 18, I was having some minor contractions that while they were not timeable, were slightly painful, so I called my midwife and she had me come into the office to check me out. She examined me and found I had progressed to 4 cm from my appt. the week before when I was 3, however I was still not at all effaced. She suggested if I had not gone into labor on my own before Friday morning, I call her while she was on call at the hospital and she'd see about possibly breaking my water then.
As Friday approached, I started thinking more and more about whether having her break my water was a good thing. In the past, I've had my kids pretty quickly after my water broke, but I started getting nervous thinking what if nothing happened and they needed to give me pitocin. I was dead set against this. So, in the meantime, I did everything I thought safe to induce labor: pineapples, spicy food, red wine, walking, sex... Nothing worked. On Friday morning, I called the MW and it turned out the hospital was too busy to give her a nurse unless I was actually in labor. She told me to "make passionate love" to my husband and she guaranteed she'd see me in the next 23 hours she was on call. I told her there'd be nothing passionate about it...lol. She insisted and said, "It doesn't have to be good for him, just good for you." I hung up the phone and we headed upstairs. Still nothing.
I wound up taking a nap and after I woke up, Corey wanted to take the kids to the park. We did and on our way back, we stopped at my parents' house. While we were there, we decided to stay for dinner. Corey was going to make us all Philly cheesesteak sandwiches and he insisted I go with him to the store to get the stuff. He wanted me out and walking as much as possible. When we got back, he started cooking and the rest of us just hung out and played with the kids. We sat down to eat about 7 and a few minutes in, I noticed the contractions I had been feeling for a few days now were starting to catch my attention and were actually timeable. I then announced to a room full of relatives (it was my parents, my aunt and her boyfriend and her two kids, my husband and my two kids) that the baby was coming tonight. Corey let out a loud, “YAHOO!”
I started timing them and they were 2-5 minutes apart. At 7:30, I called the MW, Lucie, and I told her while normal people wait an hour, I didn’t think I should since I knew it was the real deal and since I have fast labors, we wanted to get in there ASAP to get the antibiotics (I test positive for the Group B Strep). She agreed and told me to come right away.
When I got there, the waiting room was PACKED! I waited a few minutes before I went back up to the desk and told them while I wasn’t trying to be pushy and I saw they were very busy, I had fast labors and was GBS+ and needed to get on the antibiotics right away. To my surprise, they took me right in, did my BP, paged Lucie and put me in triage. They hooked me up to a monitor and started the IV. Lucie checked me and I was 7 cm.
After a few minutes in triage on the monitor, Lucie told me the baby’s heart rate was too high and because of that, they were moving me up to a regular L&D room, not the ABC (Alternative Birthing Center) like I had planned, so they could keep me on the monitor. Fine by me. She also tells me just Corey in the room for now even though my best friend was waiting with my parents to film and take pictures.
Once we got upstairs and got settled in, Lucie broke my water at 9:11. She immediately noticed meconium in the fluid and told Corey he wasn’t going to get to cut the cord after all. She said because of the meconium, a team of pediatricians would take her as soon as she came out and work on her right away. I knew a little bit about meconium and what is was and that it is usually not a big deal, so I wasn’t really worried about it.
I breathed through the contractions for an hour and with each one, I had to tell myself in my head over and over again, “You can do this. You can do this.” They flipping hurt!! With the first few really bad ones, I was a little freaked out thinking, I can’t do this and I considered drugs. But, I reminded myself that I had done it twice before and I could do it again. Just breathe through them, I told myself.
Because I was on my side the whole time, I wasn't sure if the baby was moving of if perhaps it was time to push. I was starting to get antsy again, so I asked Lucie to check me again. She did and I was 10 cm. "It's time to meet this baby who couldn't keep her room clean," she said. "Or womb, whichever you prefer." She reminded me the importance of making sure to stop pushing when she said so she could suction her out. If not for that, Cadence would have been born with one big push. Instead, I pushed, held, held, held..."Come on!! Can't...hold...anymore...!!" Released hold, pushed and out came Cadence, following by a really large splash. I didn't look. It was 10:14 p.m.
Just as Lucie said there would be, a team of doctors came in and worked on Cadence for...gosh, a few minutes anyway. It felt like an hour, but it was probably more like 5 minutes, if that. I didn't hear her crying, but I had seen, heard and read enough to know that was ok - I needn't be too concerned. When after a few minutes she was barely squeaking, they told me they were bringing her to the NICU and I could expect her to be there at least 48 hours. (Of course this meant my entire post-pardum stay she never came into the room with me once.) She had inhaled a considerable amount of meconium and needed intensive care. They brought her over to me and she was just gorgeous. It all happened so fast, so thinking back all I can remember are her eyes. She had the longest lashes - and her lips were so perfect. I held her for about 10 seconds and she was taken away again.
I knew she was in good hands. I tried not to get upset and I told myself she was going to be fine. No matter what she was going through, they had everything they needed to care for her and help her with her breathing until she was well enough to do it on her own. After she was taken away, I was in good spirits. We delivered the afterbirth and Lucie commented on how she had found our culprit. There was a true knot in her cord (pic: http://i29.photobucket.com/albums/c282/austricklia/CalliasPictures001.jpg ) It was her belief that the knot was causing her to release the meconium, breathe it in and raise her heart rate. I distinctly remember thinking how lucky I was she was ok. I had no idea what was in store...
On July 18, I was having some minor contractions that while they were not timeable, were slightly painful, so I called my midwife and she had me come into the office to check me out. She examined me and found I had progressed to 4 cm from my appt. the week before when I was 3, however I was still not at all effaced. She suggested if I had not gone into labor on my own before Friday morning, I call her while she was on call at the hospital and she'd see about possibly breaking my water then.
As Friday approached, I started thinking more and more about whether having her break my water was a good thing. In the past, I've had my kids pretty quickly after my water broke, but I started getting nervous thinking what if nothing happened and they needed to give me pitocin. I was dead set against this. So, in the meantime, I did everything I thought safe to induce labor: pineapples, spicy food, red wine, walking, sex... Nothing worked. On Friday morning, I called the MW and it turned out the hospital was too busy to give her a nurse unless I was actually in labor. She told me to "make passionate love" to my husband and she guaranteed she'd see me in the next 23 hours she was on call. I told her there'd be nothing passionate about it...lol. She insisted and said, "It doesn't have to be good for him, just good for you." I hung up the phone and we headed upstairs. Still nothing.
I wound up taking a nap and after I woke up, Corey wanted to take the kids to the park. We did and on our way back, we stopped at my parents' house. While we were there, we decided to stay for dinner. Corey was going to make us all Philly cheesesteak sandwiches and he insisted I go with him to the store to get the stuff. He wanted me out and walking as much as possible. When we got back, he started cooking and the rest of us just hung out and played with the kids. We sat down to eat about 7 and a few minutes in, I noticed the contractions I had been feeling for a few days now were starting to catch my attention and were actually timeable. I then announced to a room full of relatives (it was my parents, my aunt and her boyfriend and her two kids, my husband and my two kids) that the baby was coming tonight. Corey let out a loud, “YAHOO!”
I started timing them and they were 2-5 minutes apart. At 7:30, I called the MW, Lucie, and I told her while normal people wait an hour, I didn’t think I should since I knew it was the real deal and since I have fast labors, we wanted to get in there ASAP to get the antibiotics (I test positive for the Group B Strep). She agreed and told me to come right away.
When I got there, the waiting room was PACKED! I waited a few minutes before I went back up to the desk and told them while I wasn’t trying to be pushy and I saw they were very busy, I had fast labors and was GBS+ and needed to get on the antibiotics right away. To my surprise, they took me right in, did my BP, paged Lucie and put me in triage. They hooked me up to a monitor and started the IV. Lucie checked me and I was 7 cm.
After a few minutes in triage on the monitor, Lucie told me the baby’s heart rate was too high and because of that, they were moving me up to a regular L&D room, not the ABC (Alternative Birthing Center) like I had planned, so they could keep me on the monitor. Fine by me. She also tells me just Corey in the room for now even though my best friend was waiting with my parents to film and take pictures.
Once we got upstairs and got settled in, Lucie broke my water at 9:11. She immediately noticed meconium in the fluid and told Corey he wasn’t going to get to cut the cord after all. She said because of the meconium, a team of pediatricians would take her as soon as she came out and work on her right away. I knew a little bit about meconium and what is was and that it is usually not a big deal, so I wasn’t really worried about it.
I breathed through the contractions for an hour and with each one, I had to tell myself in my head over and over again, “You can do this. You can do this.” They flipping hurt!! With the first few really bad ones, I was a little freaked out thinking, I can’t do this and I considered drugs. But, I reminded myself that I had done it twice before and I could do it again. Just breathe through them, I told myself.
Because I was on my side the whole time, I wasn't sure if the baby was moving of if perhaps it was time to push. I was starting to get antsy again, so I asked Lucie to check me again. She did and I was 10 cm. "It's time to meet this baby who couldn't keep her room clean," she said. "Or womb, whichever you prefer." She reminded me the importance of making sure to stop pushing when she said so she could suction her out. If not for that, Cadence would have been born with one big push. Instead, I pushed, held, held, held..."Come on!! Can't...hold...anymore...!!" Released hold, pushed and out came Cadence, following by a really large splash. I didn't look. It was 10:14 p.m.
Just as Lucie said there would be, a team of doctors came in and worked on Cadence for...gosh, a few minutes anyway. It felt like an hour, but it was probably more like 5 minutes, if that. I didn't hear her crying, but I had seen, heard and read enough to know that was ok - I needn't be too concerned. When after a few minutes she was barely squeaking, they told me they were bringing her to the NICU and I could expect her to be there at least 48 hours. (Of course this meant my entire post-pardum stay she never came into the room with me once.) She had inhaled a considerable amount of meconium and needed intensive care. They brought her over to me and she was just gorgeous. It all happened so fast, so thinking back all I can remember are her eyes. She had the longest lashes - and her lips were so perfect. I held her for about 10 seconds and she was taken away again.
I knew she was in good hands. I tried not to get upset and I told myself she was going to be fine. No matter what she was going through, they had everything they needed to care for her and help her with her breathing until she was well enough to do it on her own. After she was taken away, I was in good spirits. We delivered the afterbirth and Lucie commented on how she had found our culprit. There was a true knot in her cord (pic: http://i29.photobucket.com/albums/c282/austricklia/CalliasPictures001.jpg ) It was her belief that the knot was causing her to release the meconium, breathe it in and raise her heart rate. I distinctly remember thinking how lucky I was she was ok. I had no idea what was in store...
It's been a while...
In fact, it's been 7 months since my last post. And so, so, SO much has happened. I really wish I had been blogging all along. I think I could have used the outlet. I am going to do my best to keep up with this now that I have taken the time to finally update.
On July 20, 2007, my beautiful Cadence was finally born. It's weird and I don't quite have the words to describe what I want to say. Though hers was my easiest labor, it was the...hardest? No...that's not it. I guess stressful might work? I intend to post the story of her birth immediately following this one, so you can read it there, but to sum it up, she was born with Meconium Aspiration Syndrome. It turns out there was a knot in her cord causing her all sorts of issues, including the meconium to be released and for her to inhale it in. She was on oxygen 12 days, including an overnight intubation her first night.
She spent 5 weeks and 5 days in the NICU. While she was there, we found out the knot had done more damage than we thought - at some point it cut off the oxygen to her brain and damaged her thalamus. You can read more about that in future posts I will be adding very soon. The long story short is she is hypertonic in some areas, hypotonic in other, is fed through a g-tube (she has a disorganized suck, swallow breathe reflex and therefore aspirates on her formula) and is behind on all of hr milestones. She receives Early Intervention and so far, she is doing quite well, it seems.
As I am sure you can imagine, life has been quite hectic around these parts. But, I really wanted to get into blogging and even though I let it go all those months ago, I really want to make a sincere effort to do it right this time around. I plan on posting a few more times with some back story on Cadence, but once I do, I hope to use this blog as way of venting, sharing mine and Cady's experience with others and hopefully humor some of you with my antics as a stay-at-home mom.
So, thanks for reading! I hope to catch up to the present soon. :)
On July 20, 2007, my beautiful Cadence was finally born. It's weird and I don't quite have the words to describe what I want to say. Though hers was my easiest labor, it was the...hardest? No...that's not it. I guess stressful might work? I intend to post the story of her birth immediately following this one, so you can read it there, but to sum it up, she was born with Meconium Aspiration Syndrome. It turns out there was a knot in her cord causing her all sorts of issues, including the meconium to be released and for her to inhale it in. She was on oxygen 12 days, including an overnight intubation her first night.
She spent 5 weeks and 5 days in the NICU. While she was there, we found out the knot had done more damage than we thought - at some point it cut off the oxygen to her brain and damaged her thalamus. You can read more about that in future posts I will be adding very soon. The long story short is she is hypertonic in some areas, hypotonic in other, is fed through a g-tube (she has a disorganized suck, swallow breathe reflex and therefore aspirates on her formula) and is behind on all of hr milestones. She receives Early Intervention and so far, she is doing quite well, it seems.
As I am sure you can imagine, life has been quite hectic around these parts. But, I really wanted to get into blogging and even though I let it go all those months ago, I really want to make a sincere effort to do it right this time around. I plan on posting a few more times with some back story on Cadence, but once I do, I hope to use this blog as way of venting, sharing mine and Cady's experience with others and hopefully humor some of you with my antics as a stay-at-home mom.
So, thanks for reading! I hope to catch up to the present soon. :)
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