She got worse overnight. I got a call shortly after David got home (my mom was there). Her hemoglobin was low. She needed a transfusion. Do I give consent? Ummmm, hellllllloooooooo? If it's going to help save my baby girl, DO IT! NOW! STOP TALKING AND GET TO WORK!!!
I get there and she's up to requiring 100% oxygen to keep her SATs up. Um, crap. I really don't have any words to describe how my heart sank. It was a cross between devastation, panic, disbelief, anger, and a few other things I can't quite identify right now. Because of that, they were transferring her to the PICU. Ok, but do I seriously have to get to know nurses on EVERY freaking floor of this hospital? Don't get me wrong, I wouldn't consider taking her anywhere else. And they are wonderful. I'm just at my wits end.
We get down there, and Dr. D is awesome. I hadn't met him before, but he had a preemie himself. So he actually understood everything I was dealing with. Both medically and as a parent. He did put her back on the vent (ok, just stop on my heart while it's lying on the floor), but I did agree that it was best for her. That way all the energy she was using to try and breathe could now be used to try and get better.
And God bless the angels that were watching over her. Yeah, like I said, all the nurses, etc are great. But there are some seriously special people there. As they were getting Maryn settled in, Steph, one of my favorite RTs from the NICU stopped in. Kid you not, I ran to her. Bawling, but it was so comforting to know that someone who knew her, who knew how special and wonderful she is, was going to be watching out for her. If I was concerned about her care before that, I now had confirmation that Maryn would receive the BEST care she could get.
Calls and texts from nurses. Ok, so they aren't just her nurses any more. They are family. Maryn's "aunties."
And then Erica and Julia from the lab stopped by. Wanting to know what was going on. Do you know how it feels when someone who was a complete stranger 8 months ago is honestly concerned about your baby? And to know that they just aren't saying it to make themselves feel better? No, they really care. I have no doubt. And the lady from the cafeteria (forgive me, I forgot your name! Bad Tasha!). You can always make me smile. You know me by name and will just chat if I need to. Sorry if y'all don't like seeing your names here, but you are special to Maryn, to me, and to my whole family. You all deserve to be recognized. While I wish we had all met under better circumstances, I thank God for giving me not only the gift that is Maryn, but also the gift of all of these wonderful people. I could not do this without you.
Wednesday, November 18, 2009
*&^$$#^(*&^)()#@
Yup, the title pretty much covers it.
Maryn's back in the hospital. Pneumonia. Joy. Seriously? WTF? I am so scared and so damn mad. It took just about every ounce of strength in my body to not tear my hair out. Why does this keep happening? Hasn't she been through enough?
And when are things going to start working out so that I don't have to feel like a complete failure as a mom? Dammit, I should have brought her in yesterday when I was concerned about her coughing.
Maryn's back in the hospital. Pneumonia. Joy. Seriously? WTF? I am so scared and so damn mad. It took just about every ounce of strength in my body to not tear my hair out. Why does this keep happening? Hasn't she been through enough?
And when are things going to start working out so that I don't have to feel like a complete failure as a mom? Dammit, I should have brought her in yesterday when I was concerned about her coughing.
Tuesday, November 17, 2009
People suck
Ok, so as my mom would say, "I'd like to say it can't get any worse, but I don't want to tempt fate." Things just completely suck around here.
Before anyone gets too worrried, the kids are ok. We are all fighting colds, but nothing serious. And they both were able to get the H1N1 vaccine a few weeks ago. So that was a big sigh of relief.
Jaime is now obsessed with "banana" and has learned to say "panda" and "bun." But the best is when he smiles and says "butt" and slaps his. What a goof.
Maryn had a decent appointment with the aerodigestive clinic. Lungs are a little wet, so she's back on a diuretic, but that's nothing new for us. It's a big cycle it seems. She's spitting like a fashionista redecorator, but again, nothing new. I swear I'm opting for hardwood floors whenever we get a chance to move. We are supposed to use the same bottle to feed her, to see if that helps make her fight a little less (yeah right, but we'll try!). And she's been running a low-grade fever for a few days now. Hovering right around 100*. If she still has it on Thursday, the doc wants us to bring her in just to make sure. But for now, we are just keeping on eye on her. She's not really showing any other signs of illness.
Now for the fun.
My "boss" at the middle school is treating me like crap. After 10 years, I guess I suddenly don't know what I am doing. Supposedly, I don't plan, I don't motivate kids, I don't set any guidelines. Ever. And she know that I never do any of this after spending 30 minutes in one class on one day. (Of course, listen to a student of mine, and she'd tell you a different story. Courtney came up to me yesterday and said "Mrs. LP, I miss you. I wish I was still in French. I am GOING to take French next year one way or another." But I had nothing to do with that I guess. At all.)
Then we get word that Coventry (insurance) and Millard have denied all nursing care for Maryn. And they say there are no more appeals we can go through. I was told that what she needs is considered "custodial" in care, not "pallative." Aka - we can show just anyone how to take care of her. It's not hard. This despite the three letter we have stating otherwise. From a pediatrician, a neonatologist and a pulmonologist. Guess those guys don't know what they are doing either.
AND they (insurance - thereby Millard) are trying to deny the claims for Jaime's Developmental Clinic visits. Because "developmental" issues are not covered. Seriously? Can a school district get any more hypocritical? But it's not just developmental in coverage! His ortho sees him for a slight spine malformation and his protrusion of his feet. The dietician sees him to make sure he has enough of the proper foods to eat since he was delayed due to his cleft (a MEDICAL condition). The neurologist sees him to see if his issues are caused by brain and/or chemical deficiencies. The geneticist sees him to test for a genetic cause for all his symptoms.
People have asked me if I'm taking this out on Millard when it is really just an insurance issue. But here's my thought. Millard decided this was the best company for it's employees. Millard agreed to THIS policy. Therefore, they agree with what the company says. They are just as guilty, if not more. That said, if this is the way this district wants to treat its employees, then this is NOT the place for me. so if anyone knows of a decent job in the Omaha area, please let me know. I'm about to go crazy here.
Before anyone gets too worrried, the kids are ok. We are all fighting colds, but nothing serious. And they both were able to get the H1N1 vaccine a few weeks ago. So that was a big sigh of relief.
Jaime is now obsessed with "banana" and has learned to say "panda" and "bun." But the best is when he smiles and says "butt" and slaps his. What a goof.
Maryn had a decent appointment with the aerodigestive clinic. Lungs are a little wet, so she's back on a diuretic, but that's nothing new for us. It's a big cycle it seems. She's spitting like a fashionista redecorator, but again, nothing new. I swear I'm opting for hardwood floors whenever we get a chance to move. We are supposed to use the same bottle to feed her, to see if that helps make her fight a little less (yeah right, but we'll try!). And she's been running a low-grade fever for a few days now. Hovering right around 100*. If she still has it on Thursday, the doc wants us to bring her in just to make sure. But for now, we are just keeping on eye on her. She's not really showing any other signs of illness.
Now for the fun.
My "boss" at the middle school is treating me like crap. After 10 years, I guess I suddenly don't know what I am doing. Supposedly, I don't plan, I don't motivate kids, I don't set any guidelines. Ever. And she know that I never do any of this after spending 30 minutes in one class on one day. (Of course, listen to a student of mine, and she'd tell you a different story. Courtney came up to me yesterday and said "Mrs. LP, I miss you. I wish I was still in French. I am GOING to take French next year one way or another." But I had nothing to do with that I guess. At all.)
Then we get word that Coventry (insurance) and Millard have denied all nursing care for Maryn. And they say there are no more appeals we can go through. I was told that what she needs is considered "custodial" in care, not "pallative." Aka - we can show just anyone how to take care of her. It's not hard. This despite the three letter we have stating otherwise. From a pediatrician, a neonatologist and a pulmonologist. Guess those guys don't know what they are doing either.
AND they (insurance - thereby Millard) are trying to deny the claims for Jaime's Developmental Clinic visits. Because "developmental" issues are not covered. Seriously? Can a school district get any more hypocritical? But it's not just developmental in coverage! His ortho sees him for a slight spine malformation and his protrusion of his feet. The dietician sees him to make sure he has enough of the proper foods to eat since he was delayed due to his cleft (a MEDICAL condition). The neurologist sees him to see if his issues are caused by brain and/or chemical deficiencies. The geneticist sees him to test for a genetic cause for all his symptoms.
People have asked me if I'm taking this out on Millard when it is really just an insurance issue. But here's my thought. Millard decided this was the best company for it's employees. Millard agreed to THIS policy. Therefore, they agree with what the company says. They are just as guilty, if not more. That said, if this is the way this district wants to treat its employees, then this is NOT the place for me. so if anyone knows of a decent job in the Omaha area, please let me know. I'm about to go crazy here.
Saturday, November 7, 2009
7 November
Will someone please tell me how to get Baby Girl to eat? She does lots of "pretending" but no real sucking. Stinker.
We got Jaime on WIC until Maryn turns a year old. Should help out. We can get milk, juice, eggs, cereal, etc for him. Now if we can just get HIM eating eggs, cereal, etc.
We got Jaime on WIC until Maryn turns a year old. Should help out. We can get milk, juice, eggs, cereal, etc for him. Now if we can just get HIM eating eggs, cereal, etc.
Tuesday, November 3, 2009
Post-Halloween activities
Ok. I'm gonna try to beat my October count here. Think I can do it? :P
Short version of Maryn's birth story is up on my facebook account. Check there if you wanna know. At least until I get my act together and get that damn book written. I figured I've always known I wanted kids, and Lord knows we've had a tough time of it. Maybe someone out there would get something out of our story. We'll see...
Maryn was an adorable Smurfette for Halloween. Yes, I'm sick and twisted. But this was her excuse to be blue. And this time it was ok. Long yellow braids, blue sleeper. Quite cute if I say so myself. She just kept looking at me like "Mom, WTF did you just put on my head?" Jaime on the other hand, was, um, "less enthusiastic." In fact, he screamed and hid as soon as we put his costume on. He was a monkey. I thought it appropriate since he's climbing on everything, and hes current favorite word is "banana." You think he'd say it while dressed as a monkey? Of course not.
Then yesterday, since he was repeating BANANA over, and over, and over, and, well, you get the idea, I gave him an actual banana. He would not let go. At all. For about 2 hours. I finally had to pry it from his hands when I noticed (while I was feeding Maryn mind you) that he had peeled half of it and decided it would be fun to grind it into his pants and the carpet. Oh joy. Really, it wasn't that bad, but I had to chuckle.
Latest medical news...
Jaime - lumbar puncture on the 10th to check for a neurotransmitter disorder. Blood tests to check for a different genetic mutation. Vision teacher FINALLY came out to see him. Although I didn't see much in the way of help from her this visit. Wants to walk still. Doing ok with speech preschool, although my mom reports that they don't seem to comprehend his vision issues.
Maryn - shunt is stable. I *think* her spitting is getting a tad better. Watch, tonight will be a waterfall just because I jinxed it. But she's eating worth crap right now. 45 minutes and I might get 2-3 ounces in her. So I'm concerned about dehydration.
Random us news. We want to sell the house. Ok, well, I want to sell the house. Move to Papio or Millard. So PLEASE send all friends/family looking for a cute little house in a nice neighborhood our way!
Short version of Maryn's birth story is up on my facebook account. Check there if you wanna know. At least until I get my act together and get that damn book written. I figured I've always known I wanted kids, and Lord knows we've had a tough time of it. Maybe someone out there would get something out of our story. We'll see...
Maryn was an adorable Smurfette for Halloween. Yes, I'm sick and twisted. But this was her excuse to be blue. And this time it was ok. Long yellow braids, blue sleeper. Quite cute if I say so myself. She just kept looking at me like "Mom, WTF did you just put on my head?" Jaime on the other hand, was, um, "less enthusiastic." In fact, he screamed and hid as soon as we put his costume on. He was a monkey. I thought it appropriate since he's climbing on everything, and hes current favorite word is "banana." You think he'd say it while dressed as a monkey? Of course not.
Then yesterday, since he was repeating BANANA over, and over, and over, and, well, you get the idea, I gave him an actual banana. He would not let go. At all. For about 2 hours. I finally had to pry it from his hands when I noticed (while I was feeding Maryn mind you) that he had peeled half of it and decided it would be fun to grind it into his pants and the carpet. Oh joy. Really, it wasn't that bad, but I had to chuckle.
Latest medical news...
Jaime - lumbar puncture on the 10th to check for a neurotransmitter disorder. Blood tests to check for a different genetic mutation. Vision teacher FINALLY came out to see him. Although I didn't see much in the way of help from her this visit. Wants to walk still. Doing ok with speech preschool, although my mom reports that they don't seem to comprehend his vision issues.
Maryn - shunt is stable. I *think* her spitting is getting a tad better. Watch, tonight will be a waterfall just because I jinxed it. But she's eating worth crap right now. 45 minutes and I might get 2-3 ounces in her. So I'm concerned about dehydration.
Random us news. We want to sell the house. Ok, well, I want to sell the house. Move to Papio or Millard. So PLEASE send all friends/family looking for a cute little house in a nice neighborhood our way!
Friday, October 16, 2009
October 16
Yeah, I totally suck. Tell me about it. Let's see if I can summarize the past 2 months in under a cover story.
Came home 8/27. YAY! Yeah, I bawled. But thankfully, we have some wonderful nurses. Maryn still gets to see Auntie Emily, Auntie Mackenzie, Auntie JoAnn, Auntie Julie, Auntie Mandi, Auntie Heather, Auntie Amy, and Auntie Kristin! And Miss Tina is really wonderful as well. We are lucky that Interim found her for us. Ok, so it's the only good thing Interim (home health company) has done, but don't get me started. I'll save that for another novel.
Dr. Puccioni (neurosurg) decided the shunt ws needed. Blech. I was devastated. I seriously thought we had dodged THAT bullet. No such luck. She had it placed on 9/28. They wanted to send her home the next day, but David and I fought for an extra day. I know shunts may be minor to the surgeons, something they do every day. But NOT on my miracle baby girl. One more day to make sure everything is a-ok and we know what to look for.
Still spitting like a volcano. So guess that answers the question of "would pressure be causing the spitting?" I say she just wants to wear a different outfit. But she's shockingly good at missing her clothes but hitting everything, and everyone, around her.
Up to 11 pounds. Head is 42. Length is 21ish. Eating around 25oz a day.
Jaime had a CDC appointment on 9/30. Did I mention that the end of September sucked? More tests from genetics. Of course, IF we can get approval from our crap insurance company. Again, don't get me started. And neuro wants to test for some kinda neurochemical disorder. If it comes back positive, there might be possible treatments. But it involves a spinal tap. At least they will knock him out for it. No way they would survive it any other way.
And a feeding clinic for him today. Lots of suggestions that make me feel overwhelmed. So we'll see.
I'll try not to be such a slacker. Since you know I'm just sitting here drinking chablis instead of updating...
Came home 8/27. YAY! Yeah, I bawled. But thankfully, we have some wonderful nurses. Maryn still gets to see Auntie Emily, Auntie Mackenzie, Auntie JoAnn, Auntie Julie, Auntie Mandi, Auntie Heather, Auntie Amy, and Auntie Kristin! And Miss Tina is really wonderful as well. We are lucky that Interim found her for us. Ok, so it's the only good thing Interim (home health company) has done, but don't get me started. I'll save that for another novel.
Dr. Puccioni (neurosurg) decided the shunt ws needed. Blech. I was devastated. I seriously thought we had dodged THAT bullet. No such luck. She had it placed on 9/28. They wanted to send her home the next day, but David and I fought for an extra day. I know shunts may be minor to the surgeons, something they do every day. But NOT on my miracle baby girl. One more day to make sure everything is a-ok and we know what to look for.
Still spitting like a volcano. So guess that answers the question of "would pressure be causing the spitting?" I say she just wants to wear a different outfit. But she's shockingly good at missing her clothes but hitting everything, and everyone, around her.
Up to 11 pounds. Head is 42. Length is 21ish. Eating around 25oz a day.
Jaime had a CDC appointment on 9/30. Did I mention that the end of September sucked? More tests from genetics. Of course, IF we can get approval from our crap insurance company. Again, don't get me started. And neuro wants to test for some kinda neurochemical disorder. If it comes back positive, there might be possible treatments. But it involves a spinal tap. At least they will knock him out for it. No way they would survive it any other way.
And a feeding clinic for him today. Lots of suggestions that make me feel overwhelmed. So we'll see.
I'll try not to be such a slacker. Since you know I'm just sitting here drinking chablis instead of updating...
Thursday, August 20, 2009
20 August
First - a public apology for my husband and father being uber-cranky towards people who didn't deserve it today!
Finally got the endoscope done. 645 - nothing scheduled. 815 - it's scheduled for noon. 900 - moving it to 10. 1030 - call from anesthesia about pre-op stuff. Ugh. What a headache. Hence the Starbucks Grande Latte, a bag of mini-Heath bars, a bag of mini-Mr. Goodbars, and a skim milk for lunch!
Surgeon never called me before everything. Thankfully, I knew what the deal was. But he still should have called me beforehand. My parents were able to make it there in time, despite the mess. And afterwards, I got a message from the surgeon that everything went well. Everything looked fine, and they are sending the biopsied stuff off to be tested. Should know results in a few days. And Awesome Auntie Cheryl also called me. Princess was doing well, wiggling around and all.
Then I get the lovely news that they are doing another upper GI Friday. Um, Doc, when were you going to tell me THAT? I don't know who dropped the ball, but I'm trying to stay calm. Not easy when you don't know what the hell is going on.
Headaches aside, she was a sweet little darling tonight. Cuddle time on her tummy with Mommy. And dressing in hot pink - headband and all!
Finally got the endoscope done. 645 - nothing scheduled. 815 - it's scheduled for noon. 900 - moving it to 10. 1030 - call from anesthesia about pre-op stuff. Ugh. What a headache. Hence the Starbucks Grande Latte, a bag of mini-Heath bars, a bag of mini-Mr. Goodbars, and a skim milk for lunch!
Surgeon never called me before everything. Thankfully, I knew what the deal was. But he still should have called me beforehand. My parents were able to make it there in time, despite the mess. And afterwards, I got a message from the surgeon that everything went well. Everything looked fine, and they are sending the biopsied stuff off to be tested. Should know results in a few days. And Awesome Auntie Cheryl also called me. Princess was doing well, wiggling around and all.
Then I get the lovely news that they are doing another upper GI Friday. Um, Doc, when were you going to tell me THAT? I don't know who dropped the ball, but I'm trying to stay calm. Not easy when you don't know what the hell is going on.
Headaches aside, she was a sweet little darling tonight. Cuddle time on her tummy with Mommy. And dressing in hot pink - headband and all!
Wednesday, August 19, 2009
19 August
Same shit, different day.
The docs tapped Maryn on Monday and Tuesday, hoping that would fix the spitting. Some thought that if there was a pressure build-up in her head (from the bleed, etc), that could be the cause. So far, I haven't noticed a huge difference. A little, yes. But I think things overall have been getting better over the past 2 weeks. VERY slowly, but still an improvement. So of course I'm left wondering what to do if they recommend the shunt. Is it too early to tell for sure or not? Ugh. At least she decided to show her doctor what she can do by spitting in front of him yesterday. It was decent, but not tremendous (only hit the floor, not the chair). He was, um, impressed? Oh, and tomorrow she goes in for an endoscopy and biopsy to see if she's developed a protein/milk intolerance or allergy. But we don't know when yet. And I have to work. And David has to work. So I'm seriously cranky. And we might not be able to get OUR nurse. Yeah, she's as much my nurse as Maryn's.
So needless to say, I'm annoyed and pissy. I really don't know how much longer I can take this. How much strength could I possibly have left. I just want my baby girl...
The docs tapped Maryn on Monday and Tuesday, hoping that would fix the spitting. Some thought that if there was a pressure build-up in her head (from the bleed, etc), that could be the cause. So far, I haven't noticed a huge difference. A little, yes. But I think things overall have been getting better over the past 2 weeks. VERY slowly, but still an improvement. So of course I'm left wondering what to do if they recommend the shunt. Is it too early to tell for sure or not? Ugh. At least she decided to show her doctor what she can do by spitting in front of him yesterday. It was decent, but not tremendous (only hit the floor, not the chair). He was, um, impressed? Oh, and tomorrow she goes in for an endoscopy and biopsy to see if she's developed a protein/milk intolerance or allergy. But we don't know when yet. And I have to work. And David has to work. So I'm seriously cranky. And we might not be able to get OUR nurse. Yeah, she's as much my nurse as Maryn's.
So needless to say, I'm annoyed and pissy. I really don't know how much longer I can take this. How much strength could I possibly have left. I just want my baby girl...
Saturday, August 15, 2009
15 August
Nothing new going on in the Page household. We are still in a holding pattern. Neo is checking with neurosurgery again to see if we can try tapping the reservoir on the off chance it might help with all her spitting. Basically, just making sure there isn't a big risk or anything. If that helps, then we are back in for the shunt (BOO! So not cool at this point.). If that doesn't, or if surgeon says do not tap, we're looking at a GI endoscope to look for protein intolerances, etc.
I am just getting tired of all this. Let me bring my baby girl home already!
I am just getting tired of all this. Let me bring my baby girl home already!
Tuesday, August 11, 2009
11 August
Well, baby girl managed to hit 7lbs 1oz on Sunday night! At 4 months old, she's now the size of the average newborn. Strange to think about it like that.
she's still spitting. Doc is trying her on erythromiacin (sp) to help her GI motility. Aka, he wants her to poop more. That's one thing that drives me batty about this medical stuff. Stop making everything sound so freaking fancy! Sheesh! Emesis (puking)! Stooling (pooping)! Secretions (phlegm and spit)! English please. :) Ok, off my soap box. Anyway, doc decided to do this because he's at a loss. Doesn't know what else to try, and this was something the GI docs had mentioned. She very well could just be a spitty baby. I'm ok with that, as long as we are sure there isn't some bigger problem causing everything. But I get the feeling that the doc is afraid to send her home this spitty because he doesn't know how I will handle it. Poor guy - I bawled in front of him about a week ago, and I think it completely freaked him out. Like he actually looked scared. God bless him. It's just how I deal - he did everything right, and I appreciate his candor.
But on the good side, she was awake, alert and interacting for about 3+ hours tonight. David and I showed up to receive a gift from the Wishing Well Foundation (Children's Hospital and State Troopers), and Maryn was starving. She ate her 70 ccs (which she later spit maybe 20 of). "Smiled" for the pictures, and then wanted to play. We played with her new toy from the foundation for a while. She kept getting one of the duck's feet. So cute. Oh, she also continued to taunt me, the nurses and the RTs by punching her HME/O2 off. Typical.
Jaime is trying so hard to be a big boy. He desperately wants to walk. David and I will sit on the floor and Jaime will "walk" between us. Sometimes, he'll take a few steps while holding on to only one finger on one side. He gets so proud of himself when he does that. Big smiles. And he's so smart too. He knows several body parts and understands so much. I am so lucky to be these kids' mom!
she's still spitting. Doc is trying her on erythromiacin (sp) to help her GI motility. Aka, he wants her to poop more. That's one thing that drives me batty about this medical stuff. Stop making everything sound so freaking fancy! Sheesh! Emesis (puking)! Stooling (pooping)! Secretions (phlegm and spit)! English please. :) Ok, off my soap box. Anyway, doc decided to do this because he's at a loss. Doesn't know what else to try, and this was something the GI docs had mentioned. She very well could just be a spitty baby. I'm ok with that, as long as we are sure there isn't some bigger problem causing everything. But I get the feeling that the doc is afraid to send her home this spitty because he doesn't know how I will handle it. Poor guy - I bawled in front of him about a week ago, and I think it completely freaked him out. Like he actually looked scared. God bless him. It's just how I deal - he did everything right, and I appreciate his candor.
But on the good side, she was awake, alert and interacting for about 3+ hours tonight. David and I showed up to receive a gift from the Wishing Well Foundation (Children's Hospital and State Troopers), and Maryn was starving. She ate her 70 ccs (which she later spit maybe 20 of). "Smiled" for the pictures, and then wanted to play. We played with her new toy from the foundation for a while. She kept getting one of the duck's feet. So cute. Oh, she also continued to taunt me, the nurses and the RTs by punching her HME/O2 off. Typical.
Jaime is trying so hard to be a big boy. He desperately wants to walk. David and I will sit on the floor and Jaime will "walk" between us. Sometimes, he'll take a few steps while holding on to only one finger on one side. He gets so proud of himself when he does that. Big smiles. And he's so smart too. He knows several body parts and understands so much. I am so lucky to be these kids' mom!
Saturday, August 8, 2009
8 Aug
Quick, before my headache meds knock me out....
Maryn got switched to a new formula today. GI docs wanted to try something more broken down. Never heard of this stuff before - progestamil or something like that. No idea where I'd get it if it works. But so far, so good. She took just shy of 3 oz (that's right 3, not 2!) and didn't spit yet. I stayed for about 2 hours after she ate, so I'm guessing it should stay down if it hadn't come back up yet.
I bought her some headbands today. I'm guessing she's not fond of getting bows stuck to her head with KY anymore, so we'll see if she likes these better. Will post pics when 1) I get off my arse and load them onto the computer and 2) when I figure out how to get them from computer to here. Shouldn't be hard, but then again, none of this should have been so difficult.
God bless the amazing women who have signed up to take care of Maryn once she comes home. Whenever that will be. Not only JoAnn, but now I find out for sure that Emily and Mandi will each basically be covering a shift a week. So now I can sleep at least 3 nights! I know they'll be "working," but since they'll be in my house, they're REALLY gonna become my family.
Jaime is adorable as ever. Loves talking on the phone. He'll grab it and start kissing it especially if David or my mom are on it. Oh, and he officially says "honk." We get his nose and say honk, then he does it to himself. So cute. Sometimes he'll even honk my nose. And I'm teaching him what the word "sing" means. He's starting to get it, so at his rate, he'll have it down pat by Wednesday
Maryn got switched to a new formula today. GI docs wanted to try something more broken down. Never heard of this stuff before - progestamil or something like that. No idea where I'd get it if it works. But so far, so good. She took just shy of 3 oz (that's right 3, not 2!) and didn't spit yet. I stayed for about 2 hours after she ate, so I'm guessing it should stay down if it hadn't come back up yet.
I bought her some headbands today. I'm guessing she's not fond of getting bows stuck to her head with KY anymore, so we'll see if she likes these better. Will post pics when 1) I get off my arse and load them onto the computer and 2) when I figure out how to get them from computer to here. Shouldn't be hard, but then again, none of this should have been so difficult.
God bless the amazing women who have signed up to take care of Maryn once she comes home. Whenever that will be. Not only JoAnn, but now I find out for sure that Emily and Mandi will each basically be covering a shift a week. So now I can sleep at least 3 nights! I know they'll be "working," but since they'll be in my house, they're REALLY gonna become my family.
Jaime is adorable as ever. Loves talking on the phone. He'll grab it and start kissing it especially if David or my mom are on it. Oh, and he officially says "honk." We get his nose and say honk, then he does it to himself. So cute. Sometimes he'll even honk my nose. And I'm teaching him what the word "sing" means. He's starting to get it, so at his rate, he'll have it down pat by Wednesday
Wednesday, August 5, 2009
5 Aug
Ugh. I'm back at work. So prepare yourself for lots of whining and bitching in the near future.
But Jaime is so freakin' cute. He LOVES to dance to the radio while eating breakfast. He puts his fists out and bounces them up and down. And he totally knows what he's doing. You can see it in his eyes. My mom taught him this naaaaa-na-na-na-naaaaa song. He'll dance if you sing it, then start saying "na-na-na" to encourage you to keep going. LOVE IT!
Maryn is stable. No news from the neurosurgeon, which of course is driving me batty. Why they can't make it in to see her within 36 hours is beyond me. I just want an answer dammit. Is pressure building up in her brain or not? And the resident who came by seemed clueless. No answers whatsoever. I thought he just needed an Oreo and a glass of milk.
I did convince the doc to switch her, at least temporarily, back to the original formula. I can't tell you how many times I've heard "but she can't go home on that formula" over the past week. First, shut up about it! I wanted to breastfeed her, but I was so sick, that there was no way. So thanks for reminding me! Second, don't tell me that is this ends up being the ONLY thing she can tolerate that we won't be able to get it. Yeah, it might be a pain in the ass, but don't tell me it's impossible. There has to be some way if that's what it takes. Third, if it doesn't help with the vomitting, at least we'll know for sure that's not the problem.
Now for me - I swear if one more person tells me how wonderful or special or strong I am, I am going to puncture my eardrums! Seriously people. Stop feeling sorry for me. Yeah, I hate this situation more than anything. But I also have the two most beautiful kids in the world. I wouldn't trade them for all the tea in China. Yes, it's hard. But any parent worth their salt would do the same. I have to just suck it kup and deal with it. I whine, complain, piss and moan, cry, etc, but it's just my way of dealing. You know how I hate the lack of control. So please, if you're searching for something to say to me, tell me how beautiful my kids are. Tell me how glad you are to see Maryn getting so big. Tell me that Jaime's smile makes you melt. Just don't pity me please. This is hard enough as it is, and that just might push me over the edge.
But Jaime is so freakin' cute. He LOVES to dance to the radio while eating breakfast. He puts his fists out and bounces them up and down. And he totally knows what he's doing. You can see it in his eyes. My mom taught him this naaaaa-na-na-na-naaaaa song. He'll dance if you sing it, then start saying "na-na-na" to encourage you to keep going. LOVE IT!
Maryn is stable. No news from the neurosurgeon, which of course is driving me batty. Why they can't make it in to see her within 36 hours is beyond me. I just want an answer dammit. Is pressure building up in her brain or not? And the resident who came by seemed clueless. No answers whatsoever. I thought he just needed an Oreo and a glass of milk.
I did convince the doc to switch her, at least temporarily, back to the original formula. I can't tell you how many times I've heard "but she can't go home on that formula" over the past week. First, shut up about it! I wanted to breastfeed her, but I was so sick, that there was no way. So thanks for reminding me! Second, don't tell me that is this ends up being the ONLY thing she can tolerate that we won't be able to get it. Yeah, it might be a pain in the ass, but don't tell me it's impossible. There has to be some way if that's what it takes. Third, if it doesn't help with the vomitting, at least we'll know for sure that's not the problem.
Now for me - I swear if one more person tells me how wonderful or special or strong I am, I am going to puncture my eardrums! Seriously people. Stop feeling sorry for me. Yeah, I hate this situation more than anything. But I also have the two most beautiful kids in the world. I wouldn't trade them for all the tea in China. Yes, it's hard. But any parent worth their salt would do the same. I have to just suck it kup and deal with it. I whine, complain, piss and moan, cry, etc, but it's just my way of dealing. You know how I hate the lack of control. So please, if you're searching for something to say to me, tell me how beautiful my kids are. Tell me how glad you are to see Maryn getting so big. Tell me that Jaime's smile makes you melt. Just don't pity me please. This is hard enough as it is, and that just might push me over the edge.
Monday, August 3, 2009
3 August
Venting again...
Ok, so we are still dealing with the vomit issue. She's not projectiling any more, but still spitting. New doc wonders if it's her brain that's causing the problem. Even though the ventricle size has been stable, there could be more pressure than thought. And if that's the case, we might still be in for the shunt. Waiting for ultrasound results.
And of course I'm battling the anger demon about it. For crying out loud, WTF has she done to deserve this? Huh? Playing the cards you're dealt? I don't think so. Cards don't work in the game of football. Would someone PLEASE just tell me WTH is going on? I'm tired. I'm tired of having to choose between my son and my daughter every moment of every day. I'm tired of wondering how I can afford gas to get to the hospital to see my daughter. I'm tired of the "wait and see" answers. I'm tired of people telling me that I'm so strong for dealing with all this. I'm tired of getting angry.
I just want to get my baby girl home.
Ok, so we are still dealing with the vomit issue. She's not projectiling any more, but still spitting. New doc wonders if it's her brain that's causing the problem. Even though the ventricle size has been stable, there could be more pressure than thought. And if that's the case, we might still be in for the shunt. Waiting for ultrasound results.
And of course I'm battling the anger demon about it. For crying out loud, WTF has she done to deserve this? Huh? Playing the cards you're dealt? I don't think so. Cards don't work in the game of football. Would someone PLEASE just tell me WTH is going on? I'm tired. I'm tired of having to choose between my son and my daughter every moment of every day. I'm tired of wondering how I can afford gas to get to the hospital to see my daughter. I'm tired of the "wait and see" answers. I'm tired of people telling me that I'm so strong for dealing with all this. I'm tired of getting angry.
I just want to get my baby girl home.
Saturday, August 1, 2009
1 Aug
I have yet to see Maryn today, but here's the latest. I'm at "work" and need something to keep me awake.
First, after thinking the worst about her tummy, things seem to be "looking up." No aspirating her food, and yes, they still are dying it Smurf blue. Nothing like that coming out of her trach. Back on 22 cal Neosure. Low and behold, she is spitting again. At least from what I hear, it's not projectile any more. So she got switched to Alimentum. Spit still after the first bottle of it, but it may take a few days for her system to adjust to it. We'll see. Not the most ideal situation, as it's not "formulated" to grow preemies, but it's better than nothing!
Insurance sucks. They are arguing about whether or not home nursing care is "medically necessary." Umm, yeah. Let's try and teach a stranger with no experience how to use the 7 different machines in our house. Plus how to change Maryn's trach, or clean it, or suction, or how she can play, or.... Idiots. We are going to find a way for it to happen one way or another.
And when we find a way, I am so pleased that JoAnn is going to be one of her nurses! Monday and Thursday nights I guess. So I am declaring that she is Charge Nurse of the Page household. At least I know I'll be able to sleep those nights. Maryn will definitely be in good hands. :) Now who else that we know wants to take other shifts?
First, after thinking the worst about her tummy, things seem to be "looking up." No aspirating her food, and yes, they still are dying it Smurf blue. Nothing like that coming out of her trach. Back on 22 cal Neosure. Low and behold, she is spitting again. At least from what I hear, it's not projectile any more. So she got switched to Alimentum. Spit still after the first bottle of it, but it may take a few days for her system to adjust to it. We'll see. Not the most ideal situation, as it's not "formulated" to grow preemies, but it's better than nothing!
Insurance sucks. They are arguing about whether or not home nursing care is "medically necessary." Umm, yeah. Let's try and teach a stranger with no experience how to use the 7 different machines in our house. Plus how to change Maryn's trach, or clean it, or suction, or how she can play, or.... Idiots. We are going to find a way for it to happen one way or another.
And when we find a way, I am so pleased that JoAnn is going to be one of her nurses! Monday and Thursday nights I guess. So I am declaring that she is Charge Nurse of the Page household. At least I know I'll be able to sleep those nights. Maryn will definitely be in good hands. :) Now who else that we know wants to take other shifts?
Thursday, July 30, 2009
29 july
well, well, well...
Jaime is a cuddle bug. He will not leave my side until after lunch. Which for him is about 2 pm of course. But he's wonderful. And those pucker kisses he's always giving out can't help but make me smile.
And I'm very thankful for those little things that keep me smiling.
I've been getting back into an angry rut re: Maryn. I'm pissed at the world because she shouldn't have to go through any of this. She's done nothing wrong. I just wanna punch something. Possibly myself. But then I get more and more pissed for feeling this way. Joy of the never-ending spiral.
Maryn has been spitting more. Ok, not just spitting, but projectile vomitting. Seriously. I guess she hit the chair that is about 1 1/2 feet away from her crib this morning. And pretty much after every feeding. Thought it might be only when she doesn't burp. Nope. Maybe if we suction her too quickly. Not that. Perhaps she needs to stay upright for a while after eating. Didn't help.
*I* think it's due to a change in formula. Doc said it could be some stomach stinosis (sp) thingy (narrowing just below the stomach leading to small intestine). Only fix for that would be surgery. YAY! (Insert glare here) Well, the tests for that came back negative. So no surgery needed, but no clear cause to the problem either. So, she's off formula for 24 hours. On pedialyte. Yumm-o. They'll try to reintroduce probably the same formula tomorrow, since the thought is she might just have a stomach bug. (Of course, she's not showing any other signs of being sick - no temp, no poop problems, no lethargy, and she still wants and tries to eat) If that doesn't go well, I'll be convinced that it's the formula. But here's to hoping I'm wrong - I don't wanna see my girl go through that!
Oh, and some doctors need to be impaled through their self-centered, heartless torsos. Of course I'm kidding, but there are some terrible ones out there. Today, I asked to talk to the neurologist. When he came in, he looked all confused and told me "I thought I already explained all this to your husband." Um, yeah. But he's not a doc, and I'm not a doc. So I wanted to talk to the doc personally! Get some answers to my questions that David didn't know to ask! You schmuck. Needless to say, we won't be seeing him again. Thankfully a little birdy told me that Jaime's old neuro is back in town and working in schmuck's office.
And we have been trained on portable suction machine, regular suction machine, infant CPR with a trach, apnea monitor, humidity thingy, portable oxygen tank, main oxygen machine with add-on, and back-up oxygen tank for emergencies. All since Monday. I have blue painters' tape on these things to help me remember what the hell does what. I think I'm secretly being trained to be a car mechanic.
Ya wonder why I needed a night out?
Jaime is a cuddle bug. He will not leave my side until after lunch. Which for him is about 2 pm of course. But he's wonderful. And those pucker kisses he's always giving out can't help but make me smile.
And I'm very thankful for those little things that keep me smiling.
I've been getting back into an angry rut re: Maryn. I'm pissed at the world because she shouldn't have to go through any of this. She's done nothing wrong. I just wanna punch something. Possibly myself. But then I get more and more pissed for feeling this way. Joy of the never-ending spiral.
Maryn has been spitting more. Ok, not just spitting, but projectile vomitting. Seriously. I guess she hit the chair that is about 1 1/2 feet away from her crib this morning. And pretty much after every feeding. Thought it might be only when she doesn't burp. Nope. Maybe if we suction her too quickly. Not that. Perhaps she needs to stay upright for a while after eating. Didn't help.
*I* think it's due to a change in formula. Doc said it could be some stomach stinosis (sp) thingy (narrowing just below the stomach leading to small intestine). Only fix for that would be surgery. YAY! (Insert glare here) Well, the tests for that came back negative. So no surgery needed, but no clear cause to the problem either. So, she's off formula for 24 hours. On pedialyte. Yumm-o. They'll try to reintroduce probably the same formula tomorrow, since the thought is she might just have a stomach bug. (Of course, she's not showing any other signs of being sick - no temp, no poop problems, no lethargy, and she still wants and tries to eat) If that doesn't go well, I'll be convinced that it's the formula. But here's to hoping I'm wrong - I don't wanna see my girl go through that!
Oh, and some doctors need to be impaled through their self-centered, heartless torsos. Of course I'm kidding, but there are some terrible ones out there. Today, I asked to talk to the neurologist. When he came in, he looked all confused and told me "I thought I already explained all this to your husband." Um, yeah. But he's not a doc, and I'm not a doc. So I wanted to talk to the doc personally! Get some answers to my questions that David didn't know to ask! You schmuck. Needless to say, we won't be seeing him again. Thankfully a little birdy told me that Jaime's old neuro is back in town and working in schmuck's office.
And we have been trained on portable suction machine, regular suction machine, infant CPR with a trach, apnea monitor, humidity thingy, portable oxygen tank, main oxygen machine with add-on, and back-up oxygen tank for emergencies. All since Monday. I have blue painters' tape on these things to help me remember what the hell does what. I think I'm secretly being trained to be a car mechanic.
Ya wonder why I needed a night out?
Saturday, July 25, 2009
24 July
Ok, I'm in a sentimental mood. Consider yourself warned.
First, Maryn is holding her own. She's weighing 6-8 1/2. Eating decent (still at 5 bottles), but spitting a little more. They did put her on some oxygen though, as she was sat-ing in the upper 80s/lower 90s. Great for a preemie, but now that she's considered term, the doc wants her in the mid 90s. I'm having a bit of a time trying to convince myself that this isn't a set back. I *know* it's going to help her grow, and that growing is pretty much the most important thing for her right now, but still. I liked it when she wasn't hooked up to as many wires/tubes. It's nothing huge, but, oh hell, I don't know.
I am just so darn thankful for all the wonderful people at Children's that have saved my daughter. Thanks to them, she is alive today. I swear anyone in Omaha who even thinks of going elsewhere is a complete fool. Seriously. They are now more than nurses, more than friends. These people are my family. Amy, Cheryl, Sunny, Emily, Mandi, JoAnn, Kristen, Heather, Stephanie, Kelley, many others who aren't coming to mind at this ridiculous hour. They have kept me going, never letting me give up. They always point out the bright side of even the darkest days. They make you believe that miracles can happen, even when it seems impossible. How do you thank somebody for giving you the awesome gift of your own daughter?
First, Maryn is holding her own. She's weighing 6-8 1/2. Eating decent (still at 5 bottles), but spitting a little more. They did put her on some oxygen though, as she was sat-ing in the upper 80s/lower 90s. Great for a preemie, but now that she's considered term, the doc wants her in the mid 90s. I'm having a bit of a time trying to convince myself that this isn't a set back. I *know* it's going to help her grow, and that growing is pretty much the most important thing for her right now, but still. I liked it when she wasn't hooked up to as many wires/tubes. It's nothing huge, but, oh hell, I don't know.
I am just so darn thankful for all the wonderful people at Children's that have saved my daughter. Thanks to them, she is alive today. I swear anyone in Omaha who even thinks of going elsewhere is a complete fool. Seriously. They are now more than nurses, more than friends. These people are my family. Amy, Cheryl, Sunny, Emily, Mandi, JoAnn, Kristen, Heather, Stephanie, Kelley, many others who aren't coming to mind at this ridiculous hour. They have kept me going, never letting me give up. They always point out the bright side of even the darkest days. They make you believe that miracles can happen, even when it seems impossible. How do you thank somebody for giving you the awesome gift of your own daughter?
Thursday, July 23, 2009
23 July
Wow. I totally suck. It's been days since I've updated. And what a few days it has been!
First, Jaime loves to give kisses. Has for a while. Today, he started giving his giraffe Melman kisses. He puckers and does the "mwah" sound effects and all. But will someone please explain another obsession of his to me? He likes to rub his butt on the floor when I change him. No, not like he has an itch or anything. And he giggles while doing it! Yeah, he's gonna kill me for putting that out in cyberland when he gets older, but whatever.
Maryn took her first bottle on Monday. Downed the whole thing. They started her on 3 bottles a day. Now, she's up to 5 bottles a day. MRI tomorrow to just check things out. They don't expect to get a lot of new info, but it won't hurt. And they aren't putting her under anesthesia for it. If they did, she'd have to go back on the vent. NOT OK! So I'm glad about that. She's up to 6 lb 9 oz as of last night. She's having more "awake" moments too. Up for about 2 hours with me this afternoon. Of course, my mind draws a blank and I have no idea what to do to entertain a 3 month old/newborn. She has a new dolly - a trached Minnie Mouse. :) I have to get pictures of that. And learn how to post them here. Ok, I'm really rambling aimlessly and I can't think. Off to read...
First, Jaime loves to give kisses. Has for a while. Today, he started giving his giraffe Melman kisses. He puckers and does the "mwah" sound effects and all. But will someone please explain another obsession of his to me? He likes to rub his butt on the floor when I change him. No, not like he has an itch or anything. And he giggles while doing it! Yeah, he's gonna kill me for putting that out in cyberland when he gets older, but whatever.
Maryn took her first bottle on Monday. Downed the whole thing. They started her on 3 bottles a day. Now, she's up to 5 bottles a day. MRI tomorrow to just check things out. They don't expect to get a lot of new info, but it won't hurt. And they aren't putting her under anesthesia for it. If they did, she'd have to go back on the vent. NOT OK! So I'm glad about that. She's up to 6 lb 9 oz as of last night. She's having more "awake" moments too. Up for about 2 hours with me this afternoon. Of course, my mind draws a blank and I have no idea what to do to entertain a 3 month old/newborn. She has a new dolly - a trached Minnie Mouse. :) I have to get pictures of that. And learn how to post them here. Ok, I'm really rambling aimlessly and I can't think. Off to read...
Saturday, July 18, 2009
18 July
I guess it's officially the 18th, but anyway.
The vent is gone. Auntie Cheryl was right. :) Took her straight off and put the trach collar on. Decent blood gasses (something in the 50s) and SATs mostly in the lower 90s. I talked with the Respiratory Therapist this afternoon, and she had already taken the machine out of Maryn's room. I swear if I ever see that cursed thing again, it's going out our 5th floor window.
AND I suctioned her twice today. You proud of me Auntie Amy? David even tried it. Yeah, it's scary, but whatever. At least we've been seeing her get suctioned every hour or so when she was on the vent, so it's not completely foreign to us. Just the technique and all. I managed to screw up with the glove the first time, but I'm happy to be entertainment for the night crew.
We can hold her now too. The Neo had said no, but we asked the ENT yesterday. He was fine with it as long as we disconnected any tubing stuff before we moved her. Man, that was wonderful. He didn't get far before I had her in my arms. Actually, he was still writing the OK order down in her chart!
And Jaime is a stinker as always. We had a meeting with his case worker today, JoDell. We really like her, and she was just coming over to talk and get updates. Well, we sit down, and she says hi to Jaime. Right away, he looks at her and says "bye-bye!" Waving too. It was just too cute. Every time she'd ask him something, she's get the same response. Stinker I tell you!
The vent is gone. Auntie Cheryl was right. :) Took her straight off and put the trach collar on. Decent blood gasses (something in the 50s) and SATs mostly in the lower 90s. I talked with the Respiratory Therapist this afternoon, and she had already taken the machine out of Maryn's room. I swear if I ever see that cursed thing again, it's going out our 5th floor window.
AND I suctioned her twice today. You proud of me Auntie Amy? David even tried it. Yeah, it's scary, but whatever. At least we've been seeing her get suctioned every hour or so when she was on the vent, so it's not completely foreign to us. Just the technique and all. I managed to screw up with the glove the first time, but I'm happy to be entertainment for the night crew.
We can hold her now too. The Neo had said no, but we asked the ENT yesterday. He was fine with it as long as we disconnected any tubing stuff before we moved her. Man, that was wonderful. He didn't get far before I had her in my arms. Actually, he was still writing the OK order down in her chart!
And Jaime is a stinker as always. We had a meeting with his case worker today, JoDell. We really like her, and she was just coming over to talk and get updates. Well, we sit down, and she says hi to Jaime. Right away, he looks at her and says "bye-bye!" Waving too. It was just too cute. Every time she'd ask him something, she's get the same response. Stinker I tell you!
Wednesday, July 15, 2009
Happy Due Date (yeah right) July 15
Well, it's done. And I have to say that as awful as it was, I now can see that it is a blessing in disguise. She did need the trach. We just couldn't tell until the doc got in there.
They had to reintubate during the procedure. Well, during her first bronch, he was able to get a 3.5 tube in easily. At the 2nd bronch, he could only get a 3.0 in. Today, the 3.0 wouldn't even work. So, that means that the swelling was still there and actually worse. I guess I kind of look at it like a callous. The ET tube kept rubbing and rubbing on a certain area, so it got bigger. But if you stop messing with the callous for a period of time, it will likely get smaller. That's the hope - the swelling will decrease over the next several months, and she will grow, so that we can get rid of the trach in roughly a year.
And she was breathing so much easier. I thought she was doing fine before, working a little, but not terribly hard. Only now can I appreciate the difference. No more pulling to try to get a full breath in. I can't explain it in words - it was something you just have to see.
So yeah, I'm more confident with our decision. Yes, it's going to suck to have to deal with the extra trach crap. Yes, I still feel completely responsible for putting her through this. Yes, I'm impatient and want her off the vent and in my arms NOW. But if it's what's best for her, then I'll find a way to deal. Very possibly using agave nectar, but still.
I must also say a huge thank you to everyone who sent prayers up for her. Keep 'em coming. They seem to be working. It's weird - going through all this makes me feel completely alone and yet very loved and lucky at the same time. That's because of you, my friends. You don't let me give up. You give me a hug when I need it and a smack of reality when I freak. Thank you.
They had to reintubate during the procedure. Well, during her first bronch, he was able to get a 3.5 tube in easily. At the 2nd bronch, he could only get a 3.0 in. Today, the 3.0 wouldn't even work. So, that means that the swelling was still there and actually worse. I guess I kind of look at it like a callous. The ET tube kept rubbing and rubbing on a certain area, so it got bigger. But if you stop messing with the callous for a period of time, it will likely get smaller. That's the hope - the swelling will decrease over the next several months, and she will grow, so that we can get rid of the trach in roughly a year.
And she was breathing so much easier. I thought she was doing fine before, working a little, but not terribly hard. Only now can I appreciate the difference. No more pulling to try to get a full breath in. I can't explain it in words - it was something you just have to see.
So yeah, I'm more confident with our decision. Yes, it's going to suck to have to deal with the extra trach crap. Yes, I still feel completely responsible for putting her through this. Yes, I'm impatient and want her off the vent and in my arms NOW. But if it's what's best for her, then I'll find a way to deal. Very possibly using agave nectar, but still.
I must also say a huge thank you to everyone who sent prayers up for her. Keep 'em coming. They seem to be working. It's weird - going through all this makes me feel completely alone and yet very loved and lucky at the same time. That's because of you, my friends. You don't let me give up. You give me a hug when I need it and a smack of reality when I freak. Thank you.
Tuesday, July 14, 2009
14 july
this sucks. this isn't fair. i'm pissed at the world. i hate...i don't know.
got the news today that the doc thinks maryn needs the trach. i thought she was doing so well, fighting the good fight and all. but the benefit of the steroids is maxed out, and the squeeking is still there. we could try and make it still, but the odds are that she'd need it down the road. one cold or sinus infection over the next 6-12 months or so, and she'd be back on the vent. and that's the last thing i want for her, as the ET tube seems to make everything worse. so yeah, we're doing it. tomorrow morning at 7. gee, kinda overshadows the fact that she finally got to meet her big brother today. and that pisses me off too.
and stupid people who are selfish aren't helping the situation. sorry i'm inconveniencing anyone now that i have to think about my daughter having surgery. and jaime's so hard to take care of.
so please pray for a quick surgery, fast healing, and some peace of mind for her mom and dad. we just want to do the best thing for her.
got the news today that the doc thinks maryn needs the trach. i thought she was doing so well, fighting the good fight and all. but the benefit of the steroids is maxed out, and the squeeking is still there. we could try and make it still, but the odds are that she'd need it down the road. one cold or sinus infection over the next 6-12 months or so, and she'd be back on the vent. and that's the last thing i want for her, as the ET tube seems to make everything worse. so yeah, we're doing it. tomorrow morning at 7. gee, kinda overshadows the fact that she finally got to meet her big brother today. and that pisses me off too.
and stupid people who are selfish aren't helping the situation. sorry i'm inconveniencing anyone now that i have to think about my daughter having surgery. and jaime's so hard to take care of.
so please pray for a quick surgery, fast healing, and some peace of mind for her mom and dad. we just want to do the best thing for her.
Wednesday, July 8, 2009
Day 100
yup, my baby girl is officially 100 days old today.
Nothing big today. Doc thinks she looks even better today than she did yesterday. She's still squeeking, but it was a little better. They took her down from 3 1/2 L to 3L. Still don't really know what that means, but I know it's a good thing. She's still on her continuous feeds - doc doesn't want to mess with anything else until we pretty much know if she's gonna fly with the triple-H stuff or not.
yesterday's brain ultrasound was stable again. Doc things we might have missed the bullet on the shunt stuff. Definitely a good thing.
And Jaime is now obsessed with trying to eat my nose. Really.
Nothing big today. Doc thinks she looks even better today than she did yesterday. She's still squeeking, but it was a little better. They took her down from 3 1/2 L to 3L. Still don't really know what that means, but I know it's a good thing. She's still on her continuous feeds - doc doesn't want to mess with anything else until we pretty much know if she's gonna fly with the triple-H stuff or not.
yesterday's brain ultrasound was stable again. Doc things we might have missed the bullet on the shunt stuff. Definitely a good thing.
And Jaime is now obsessed with trying to eat my nose. Really.
Tuesday, July 7, 2009
7 july
well, we are still off the vent. Blood gasses still look good. They are going up a touch (43, 50, 53), but they are still lower than most of her gasses were while she was vented! She does have a touch of strider (squeeking from a floppy airway) and is working to breathe, but she's hanging! No additional oxygen, and they actually took her down a big on the high flow stuff (from 4 to 3 1/2. I have no real clue as to what that means, but it's just for those of you medically peoples out there.) She gets her last dose of steroids tonight, so tomorrow night is the next big hurdle. Things could get worse as they wear off. So I'm contemplating staying at the hossy overnight. We'll see. The doc says that if we make it through the weekend without having to be reintubated, that she should fly. I just don't know if I can handle a set-back at this point, so please pray for success!
Jaime has been just a dream. Last night, he went to sleep so well. I started to rock him and David went outside to pull his car into the garage. By the time David got back in, Jaime was out! I just love cuddling with him. Oh, and he didn't have oatmeal for breakfast!!! I went out on a limb and tried soggy cocoa krispies. it took a while, but he ate the whole thing!!!
Have I mentioned recently that my kids are the best?
Oh, and good luck at home Miss Zoey!!!
Jaime has been just a dream. Last night, he went to sleep so well. I started to rock him and David went outside to pull his car into the garage. By the time David got back in, Jaime was out! I just love cuddling with him. Oh, and he didn't have oatmeal for breakfast!!! I went out on a limb and tried soggy cocoa krispies. it took a while, but he ate the whole thing!!!
Have I mentioned recently that my kids are the best?
Oh, and good luck at home Miss Zoey!!!
Monday, July 6, 2009
6 July 5:00
Still on the high humidity stuff. 4 litres, roughly 30% oxygen. She has not alarmed since getting switched over. In fact, her SATs have remained in the 90s. **knocking on EVERYTHING wood in reach**
It was so nice being able to pick her up on my own, when I wanted to. And if we got uncomfortable, we could readjust on our own. Such simple things can really bring such pleasure.
But of course, I'm still afraid to get my hopes up. If she's still off the vent come weekend time, we should be good. But she's been off for a while before. I desperately want this to work, and she's doing so well right now. So how do you NOT get your hopes up?
It was so nice being able to pick her up on my own, when I wanted to. And if we got uncomfortable, we could readjust on our own. Such simple things can really bring such pleasure.
But of course, I'm still afraid to get my hopes up. If she's still off the vent come weekend time, we should be good. But she's been off for a while before. I desperately want this to work, and she's doing so well right now. So how do you NOT get your hopes up?
6 July 12:30
Tube is out. We are on humidified high-flow. Right around 30%. SAT-ing 97, heartrate of 157. Two blood gasses ordered for later. Those will be the biggest hurdle. then getting off the steroid. Doc says we should know if we're gonna fly by the weekend.
Saturday, July 4, 2009
3 july
same old same old. They are still sucking more and more gunk out of her. Nothing showing signs of infection though. Blood work, xray and labs are normal. So as of right now, the plan still is steroids tomorrow and extubation on Monday.
And she hit 6 pounds tonight!
Jaime seems to like being back home. We spent the whole day together. He'd follow me around. I survived a tickle attack. And he now likes to "go crazy" which means he kicks or stomps a lot while laughing. A little wiggling mixed in too. And he tries to say "go crazy." So cute.
And she hit 6 pounds tonight!
Jaime seems to like being back home. We spent the whole day together. He'd follow me around. I survived a tickle attack. And he now likes to "go crazy" which means he kicks or stomps a lot while laughing. A little wiggling mixed in too. And he tries to say "go crazy." So cute.
Wednesday, July 1, 2009
happy 3 month birthday
Nothing too spectacular going on, but I wanted to publically wish my baby girl a happy birthday.
She's had fewer "episodes" since getting reintubated yesterday. Seems like putting it in a little farther/further (whatever) is bothering her less. She should be having an upper GI study done Thursday. Just a precursor to the possible g-button next week. Nothing big. And she was FINALLY decent for Nurse Amy.
I did some scrapbooking of my girl today. Got home and showed Jaime one of the pages. It was so cute. He started reaching for it. I asked him if he wanted to give baby sister's picture a kiss. And he leaned in to do it! I can't wait until I can let the two of them meet. yeah, that part sucks.
Oh, and she's officially gained 4 pounds since birth. 4lbs in 3 months. IDK, but sounds good to me.
And lastly, I must send a shout-out (yeah, I'm that old) to my buddy Logan who finally got to go home. Happy late 7 month birthday buddy! Glad you are where you belong.
She's had fewer "episodes" since getting reintubated yesterday. Seems like putting it in a little farther/further (whatever) is bothering her less. She should be having an upper GI study done Thursday. Just a precursor to the possible g-button next week. Nothing big. And she was FINALLY decent for Nurse Amy.
I did some scrapbooking of my girl today. Got home and showed Jaime one of the pages. It was so cute. He started reaching for it. I asked him if he wanted to give baby sister's picture a kiss. And he leaned in to do it! I can't wait until I can let the two of them meet. yeah, that part sucks.
Oh, and she's officially gained 4 pounds since birth. 4lbs in 3 months. IDK, but sounds good to me.
And lastly, I must send a shout-out (yeah, I'm that old) to my buddy Logan who finally got to go home. Happy late 7 month birthday buddy! Glad you are where you belong.
Tuesday, June 30, 2009
30 June
I'm stressed, I'm cranky, I'm about ready to pull my hair out.
Maryn self-extubated AGAIN today. I was just holding her, and she decided that she'd cough it out. Now. I guess she didn't want to wait until next week. So gee, that was fun. This after days of her broncho-spasming. And I guess yesterday, they needed to bag her SEVEN times. This damn tube is starting to get to me. I completely understand the doc wanting to go with the initial plan (steroids on Sat, extubation on Mon) so that he's around when they do everything and so that they are fully staffed (holiday this weekend and all), but it's still frustrating. Actually, I'm beyond frustrated. I'm starting to get pissed. At the world.
And we are getting ready to head back home, so let's pile on the stress. I'm looking forward to it, but it's, well....stressful! I'm worried about taking care of Jaime without help. I'm still SO tired, no matter how much I sleep. And will I still be able to make it to the hospital enough? And what about when I have to go back to...ugh...work? What then?
Oh yeah, how about $$ too? My last check was about 3/5 of the norm. Thank God for savings accounts. And I haven't even begun to look at medical bills.
And our 5th anniversary is Thursday. David, God bless him, is wanting to go all out. I'm just so at the end of my rope, I just hope I can at least moderately enjoy dinner.
Maryn self-extubated AGAIN today. I was just holding her, and she decided that she'd cough it out. Now. I guess she didn't want to wait until next week. So gee, that was fun. This after days of her broncho-spasming. And I guess yesterday, they needed to bag her SEVEN times. This damn tube is starting to get to me. I completely understand the doc wanting to go with the initial plan (steroids on Sat, extubation on Mon) so that he's around when they do everything and so that they are fully staffed (holiday this weekend and all), but it's still frustrating. Actually, I'm beyond frustrated. I'm starting to get pissed. At the world.
And we are getting ready to head back home, so let's pile on the stress. I'm looking forward to it, but it's, well....stressful! I'm worried about taking care of Jaime without help. I'm still SO tired, no matter how much I sleep. And will I still be able to make it to the hospital enough? And what about when I have to go back to...ugh...work? What then?
Oh yeah, how about $$ too? My last check was about 3/5 of the norm. Thank God for savings accounts. And I haven't even begun to look at medical bills.
And our 5th anniversary is Thursday. David, God bless him, is wanting to go all out. I'm just so at the end of my rope, I just hope I can at least moderately enjoy dinner.
Wednesday, June 24, 2009
24 June
Good news and bad news. Bad news first.
If we end up needing the trach, we will probably also do a g-button at the same time. Since she's had the vent in for such a long time, she probably has quite the oral aversion, and if they do it at the same time, that's one less need to put her under anesthesia. This came as quite a shock to me. Don't know what really to think about it yet, but I do know I'm in favor of fewer exposures to anesthesia if possible.
And the little princess has been throwing fits recently. Bradied twice yesterday while I was holding her. And today, she was playing games with her SATs all day. One second it was 93, the next we were in the 50s. And she was really agitated today. Don't know why.
So-so news. We are probably looking at another 2-3 months in the NICU. No getting out around due dates for us.
Good news. We have a 5-pounder. Actually, she's 5-2 as of tonight. She hit the 5 lb mark last night.
If we end up needing the trach, we will probably also do a g-button at the same time. Since she's had the vent in for such a long time, she probably has quite the oral aversion, and if they do it at the same time, that's one less need to put her under anesthesia. This came as quite a shock to me. Don't know what really to think about it yet, but I do know I'm in favor of fewer exposures to anesthesia if possible.
And the little princess has been throwing fits recently. Bradied twice yesterday while I was holding her. And today, she was playing games with her SATs all day. One second it was 93, the next we were in the 50s. And she was really agitated today. Don't know why.
So-so news. We are probably looking at another 2-3 months in the NICU. No getting out around due dates for us.
Good news. We have a 5-pounder. Actually, she's 5-2 as of tonight. She hit the 5 lb mark last night.
Monday, June 22, 2009
June 22. Ugh.
Blech, blech, blech.
Bronch was today. Still a bit of "floppiness." And now we have notable swelling. Probably caused by the ET tube in large part. So yeah, she needs the tube to breathe, but it's also making it harder for her to breathe without it. Joy. Sooooooooo....two more weeks. Doubling her reflux meds, since that can cause swelling, and on continuous feeds instead of bolus feeding (supposed to lessen reflux risks). They'll extubate in about 2 weeks, and if that doesn't work, we are really looking at a trach.
Then she starts spitting more. I hope it's just due to the continuous feeds. But of course, I'm now worried about that too.
And the eye doc came in. As far as the ROP goes, she's stable. But he noticed a "discoloration" in an upper portion of her right eye. He doesn't think it's anything major - probably just like a birthmark or something - but he's going to keep an eye on it.
And ya wonder why I get completely depressed.
Bronch was today. Still a bit of "floppiness." And now we have notable swelling. Probably caused by the ET tube in large part. So yeah, she needs the tube to breathe, but it's also making it harder for her to breathe without it. Joy. Sooooooooo....two more weeks. Doubling her reflux meds, since that can cause swelling, and on continuous feeds instead of bolus feeding (supposed to lessen reflux risks). They'll extubate in about 2 weeks, and if that doesn't work, we are really looking at a trach.
Then she starts spitting more. I hope it's just due to the continuous feeds. But of course, I'm now worried about that too.
And the eye doc came in. As far as the ROP goes, she's stable. But he noticed a "discoloration" in an upper portion of her right eye. He doesn't think it's anything major - probably just like a birthmark or something - but he's going to keep an eye on it.
And ya wonder why I get completely depressed.
Sunday, June 21, 2009
June 21 quickie
Bronch moved to Monday. Fingers crossed. Hoping for some good answers. This one's gonna take a little longer, so I'm gonna caffeine it up and grab my book. Reading the TrueBlood books. Not as good as Twilight, but hey. A girl's gotta do what a girl's gotta do.
And also hoping for a good nurse. I know one of our favorites Amy won't be there, and I'm worried we'll get someone who doesn't know Maryn. Although after almost 12 weeks, I'm starting to wonder who DOESN'T know her. But there are some. So I asked the charge nurse today to give us someone who knows her, like one of our other faves, Auntie Cheryl. Yeah, she's not really an aunt, but she might as well be. There are a few nurses who I think we are going to officially adopt into the family.
And also hoping for a good nurse. I know one of our favorites Amy won't be there, and I'm worried we'll get someone who doesn't know Maryn. Although after almost 12 weeks, I'm starting to wonder who DOESN'T know her. But there are some. So I asked the charge nurse today to give us someone who knows her, like one of our other faves, Auntie Cheryl. Yeah, she's not really an aunt, but she might as well be. There are a few nurses who I think we are going to officially adopt into the family.
Friday, June 19, 2009
June 19
Jaime is screaming. Fun night last night. He was up until midnight. Storm alarms went off at 230. Thankfully, HE slept through that. But he was up again from 430-630. WTH is up with this all of a sudden? But of course he was full of cuddles and kisses today. So even if I was mad at him (which I wasn't), I wouldn't have been able to stay so.
Maryn is still in her big-girl crib. Fingers crossed that she's able to keep her temp up. It's so nice being able to go in there and just lean over to kiss her forehead anytime, instead of waiting to get her out. Trying to squeeze into the isolette isn't fun. Seriously.
We are loving the new room. She actually gets some sunlight. It's big in comparison. So I spent 2+ hours holding her this afternoon. She slept the whole time. I just looked out the window and read my book while cuddling. So nice.
And she's starting to outgrow her preemie clothes. There are 2 outfits that must be retired (actually re-gifted back to the NICU) because her feet are already in the bottoms. I'm curious to see if she grew any this week, as she didn't last week. Was too busy putting on the weight. Which is 4lbs 8oz as of last night by the way.
She is having another bronch on Wednesday. PLEASE pray for some answers! Preferably ones that don't involve a trach.
Off to indulge in toasted almond fudge....
Maryn is still in her big-girl crib. Fingers crossed that she's able to keep her temp up. It's so nice being able to go in there and just lean over to kiss her forehead anytime, instead of waiting to get her out. Trying to squeeze into the isolette isn't fun. Seriously.
We are loving the new room. She actually gets some sunlight. It's big in comparison. So I spent 2+ hours holding her this afternoon. She slept the whole time. I just looked out the window and read my book while cuddling. So nice.
And she's starting to outgrow her preemie clothes. There are 2 outfits that must be retired (actually re-gifted back to the NICU) because her feet are already in the bottoms. I'm curious to see if she grew any this week, as she didn't last week. Was too busy putting on the weight. Which is 4lbs 8oz as of last night by the way.
She is having another bronch on Wednesday. PLEASE pray for some answers! Preferably ones that don't involve a trach.
Off to indulge in toasted almond fudge....
Wednesday, June 17, 2009
June 17
Back on the vent. She was on high flow nasal canula for about 3 hours yesterday, but there still seems to be a problem with her airway collapsing. This just sucks. We've tried to get her off the vent at least seven times now. They are going to give her more time again. Then sometime late next week, we are headed to the OR again so ENT can do another bronch, bring her back out of the anesthesia, then look at her airway while she's awake again. Joy of joys.
At least we did get some good news. Her ventricle size was definitely smaller. So there is a real chance she won't need a shunt. Small, but real.
Plus she got upgraded to the penthouse suite. Unfortunately, it's because our friend Logan transferred to a different hospital. But we now have the "long-timer" corner room with a window. Any Maryn's boyfriend was moved next door today with his brother too. WOOHOO.
And during all this, I think I pissed off off the karma gods or something. Not only did we deal with Maryn and the vent fiasco, but i had a flat tire when I got out to the parking garage. Then I broke a plate as I was going back into the house. And Jaime woke up in the middle of the night again. i need tequila. The good stuff. In large quantities.
At least we did get some good news. Her ventricle size was definitely smaller. So there is a real chance she won't need a shunt. Small, but real.
Plus she got upgraded to the penthouse suite. Unfortunately, it's because our friend Logan transferred to a different hospital. But we now have the "long-timer" corner room with a window. Any Maryn's boyfriend was moved next door today with his brother too. WOOHOO.
And during all this, I think I pissed off off the karma gods or something. Not only did we deal with Maryn and the vent fiasco, but i had a flat tire when I got out to the parking garage. Then I broke a plate as I was going back into the house. And Jaime woke up in the middle of the night again. i need tequila. The good stuff. In large quantities.
Thursday, June 11, 2009
June 11
Not much to tell. Maryn has now gained 1 kg since birth. 3lbs 15oz or 1790 grams. At that weight, she might get to move into a crib sometime soon. She's still on the vent, and they are hoping to wait until late next week to try getting off it again.
Jaime is a sweet bug. I came home from Dr., meeting at the hospital, and cuddling my baby girl. He needed a cuddle too, and without asking, he also gave me a kiss! I love it when he puckers. So cute.
Me, I'm done with my OB appointments until NOVEMBER! WTF am I going to do? I can't go 6 months without seeing them? Isn't that too long? It just won't feel right! So I told Kim at the desk to call me if they had any job openings coming up. Give me an excuse to go in. You know it's bad when you know a large number of staff members, and they know you too.
Jaime is a sweet bug. I came home from Dr., meeting at the hospital, and cuddling my baby girl. He needed a cuddle too, and without asking, he also gave me a kiss! I love it when he puckers. So cute.
Me, I'm done with my OB appointments until NOVEMBER! WTF am I going to do? I can't go 6 months without seeing them? Isn't that too long? It just won't feel right! So I told Kim at the desk to call me if they had any job openings coming up. Give me an excuse to go in. You know it's bad when you know a large number of staff members, and they know you too.
Sunday, June 7, 2009
June 7 - part 2
Well, at least she didn't spit up much today. I still kinda wish they would just to the xray, just to make sure. And hell, we aren't paying for it any more. Not only have we way beyond maxed out the insurance out-of-pocket (MY hospital bill alone was over $80,000, not including any of the doctors' fees), but M should be approved by Medicaid any day now.
Currently, I'm very thankful we have a certain nurse again tonight. We haven't had any bad ones with M, but the one who took over today was iffy. She was from the PICU, and I could tell she was uncomfortable dealing with M. Don't know if it was her size, the fact that she's vented, or what, but I had to basically tell her to come in and suction her. She would leave the side of the isolette down and walk away. Umm, no. She may be a preemie, but she *could* roll over (she's sure been trying to). And she ain't gonna end up on the floor. Not while I'm around. Ya wonder why my headache went all the way into my middle back earlier.
She's up to 41 cm long (about 16 inches) and her head circumference was 30 cm. That was ok - not good, not bad. We'll see how the brain u/s goes on Tuesday. She did lose about 20 oz, but that's not a concern at this point for me. Heck, the way this kid poops, she could easily poop 20oz at a time! Seriously. She did it again in her bath yesterday.
As for the monkey, he's flinging poo too. Has started to pull hair and grab at Nana's face. It's probably typical 2-year-old stuff, but it still bothers me. He's better with me about it, especially if I tell him "gentle" a lot as he's reaching for me. And he would not go to sleep tonight, so I had to put him down. Let the screaming ensue. And I'm a horrible mom. I couldn't help but chuckle. He was definitely crying his "I'm pissed" cry.
So I'm a cranky mess. My arm hurts from the Implanon. And lexapro is crap. I am so needing a night out with the girls.
Currently, I'm very thankful we have a certain nurse again tonight. We haven't had any bad ones with M, but the one who took over today was iffy. She was from the PICU, and I could tell she was uncomfortable dealing with M. Don't know if it was her size, the fact that she's vented, or what, but I had to basically tell her to come in and suction her. She would leave the side of the isolette down and walk away. Umm, no. She may be a preemie, but she *could* roll over (she's sure been trying to). And she ain't gonna end up on the floor. Not while I'm around. Ya wonder why my headache went all the way into my middle back earlier.
She's up to 41 cm long (about 16 inches) and her head circumference was 30 cm. That was ok - not good, not bad. We'll see how the brain u/s goes on Tuesday. She did lose about 20 oz, but that's not a concern at this point for me. Heck, the way this kid poops, she could easily poop 20oz at a time! Seriously. She did it again in her bath yesterday.
As for the monkey, he's flinging poo too. Has started to pull hair and grab at Nana's face. It's probably typical 2-year-old stuff, but it still bothers me. He's better with me about it, especially if I tell him "gentle" a lot as he's reaching for me. And he would not go to sleep tonight, so I had to put him down. Let the screaming ensue. And I'm a horrible mom. I couldn't help but chuckle. He was definitely crying his "I'm pissed" cry.
So I'm a cranky mess. My arm hurts from the Implanon. And lexapro is crap. I am so needing a night out with the girls.
The Charleston
Two steps forward. Two steps back. Ugh.
Bronch went as well as could be expected. They didn't find anything abnormal. No narrowing below the vocal cords other than a little swelling that was expected. She came back on the nasal canula. I LOVED being able to see those chubby cheeks. But she was really struggling to breathe. A few hours later, she got really pale, and her nurse (the WONDERFUL Amy) called the NNP. She just looked miserable, with eyes that just screamed "mommy, make it better." Just broke my heart. Blood gas to see how she was doing. It came back high, so they moved her to CPAP to help her out. Still lots of struggling, but she wasn't having a ton of brady or desat episodes and her color did improve a bit. The next day, Amy had her again. Thank God. Her CO2 levels were going back up, and she still was having lots of retraction and squeaking. Yeah, technical term "squeaking." Right now, I can't remember the actual term for the life of me. Even if I could, I'm pretty sure I couldn't spell it! So ENT came by and looked above her vocal cords this time. Not so good. Excess swelling there. Could be reflux, could be more. So they put her on prevacid to see if that will help. But in the mean time, she's back on the vent for roughly 2 weeks. And if the prevacid doesn't seem to help, we could be talking tracheostomy in a few weeks.
She did manage to double her birth weight as of Saturday. Even more - up to 1610 grams (790 at birth). So she's 3lbs 9oz now. Yay! But of course, the step back. She was spitting more again yesterday. Could be nothing, could be signs of tummy troubles again. If she spits more today, x-ray it is. If that is the case, PLEASE let it come back ok. If not, I am pretty sure I will go over the edge.
Bronch went as well as could be expected. They didn't find anything abnormal. No narrowing below the vocal cords other than a little swelling that was expected. She came back on the nasal canula. I LOVED being able to see those chubby cheeks. But she was really struggling to breathe. A few hours later, she got really pale, and her nurse (the WONDERFUL Amy) called the NNP. She just looked miserable, with eyes that just screamed "mommy, make it better." Just broke my heart. Blood gas to see how she was doing. It came back high, so they moved her to CPAP to help her out. Still lots of struggling, but she wasn't having a ton of brady or desat episodes and her color did improve a bit. The next day, Amy had her again. Thank God. Her CO2 levels were going back up, and she still was having lots of retraction and squeaking. Yeah, technical term "squeaking." Right now, I can't remember the actual term for the life of me. Even if I could, I'm pretty sure I couldn't spell it! So ENT came by and looked above her vocal cords this time. Not so good. Excess swelling there. Could be reflux, could be more. So they put her on prevacid to see if that will help. But in the mean time, she's back on the vent for roughly 2 weeks. And if the prevacid doesn't seem to help, we could be talking tracheostomy in a few weeks.
She did manage to double her birth weight as of Saturday. Even more - up to 1610 grams (790 at birth). So she's 3lbs 9oz now. Yay! But of course, the step back. She was spitting more again yesterday. Could be nothing, could be signs of tummy troubles again. If she spits more today, x-ray it is. If that is the case, PLEASE let it come back ok. If not, I am pretty sure I will go over the edge.
Tuesday, June 2, 2009
June 2
Not much news today. She's up to 3lbs 6oz, but I figure at least 1oz of that is the IV contraption attached to her left foot. But that's still a decent weight gain. Once she his 3-8, she will have officially doubled her weight since birth. Brain ultrasound was showing things were stable. The new neonate on our case mentioned there is a chance she wouldn't need a shunt. But it's too early to tell for sure. Optho came by again. Her eyes are a touch worse (zone 2, stage 2). I'm not surprised. He's just going to watch her closely. But if she hits a stage 3, we're going to start talking laser surgery. And the ENT is going to be doing the bronchoscopy some time this week, but we don't yet know exactly when.
Jaime is trying so hard to talk! Now if someone can come translate for me, I would be eternally grateful. I have no idea what he's saying most of the time. But I just pretend like I do.
TTFN
Jaime is trying so hard to talk! Now if someone can come translate for me, I would be eternally grateful. I have no idea what he's saying most of the time. But I just pretend like I do.
TTFN
Sunday, May 31, 2009
Not so happy 2-month birthday
Ugh.
To make things short....
Doc wanted to run some tests to see if a respiratory infection could be a partial cause for failing on the CPAP. Coming back positive, but they don't know for what yet. The culture should come back sometime Monday. So she had to get another IV for the antibiotics. Not fun to watch.
Bronchoscope still planned for later this week. Under full anesthesia.
And 5 freaking shots today. Even more fun to watch! Joy oh joy.
To make things short....
Doc wanted to run some tests to see if a respiratory infection could be a partial cause for failing on the CPAP. Coming back positive, but they don't know for what yet. The culture should come back sometime Monday. So she had to get another IV for the antibiotics. Not fun to watch.
Bronchoscope still planned for later this week. Under full anesthesia.
And 5 freaking shots today. Even more fun to watch! Joy oh joy.
Friday, May 29, 2009
Today sucks
Reintubated. I'm pretty much devastated. She was working really hard, and the nurses were needing to physically stimulate her to get her to come out of her bradies and desats. When the neonate reintubated her, he noticed that there was a narrowing of her windpipe just below her vocal cords. Could be mucus, could be scar tissue.
Sooooooo....that means she has to go under anesthesia AGAIN so the ENT can look and see what the deal is. And if it is scar tissue, it could lead to another surgery. But we won't know much until after the bronchioscope, which will probably be some time next week. At least the ENTs that they use are some good ones, not the quacks that we used to deal with for Jameson.
And I found all this out while at my dad's retirement party. So I pretty much managed to ruin everyone else's day too. Yay me.
Sooooooo....that means she has to go under anesthesia AGAIN so the ENT can look and see what the deal is. And if it is scar tissue, it could lead to another surgery. But we won't know much until after the bronchioscope, which will probably be some time next week. At least the ENTs that they use are some good ones, not the quacks that we used to deal with for Jameson.
And I found all this out while at my dad's retirement party. So I pretty much managed to ruin everyone else's day too. Yay me.
Thursday, May 28, 2009
May 28
Geez, I feel like I'm being attacked by a vampire again. 3 more vials of blood given to my doc today. And that's after the 4 from yesterday. At least, if I'm going to be attacked like this, can someone make the vamp look like E.C? :)
Jaime is a crazy kid. As ever. Tried to help Nana with her ice cream sandwich. Too cute.
Sent my parents to the neighbor's garage sale this afternoon. $40 for a white crib. NICE! Too good to pass up, so at least Maryn has a place to sleep once we get to take her home. And yes, we checked the slats and all.
And the Princess was put on CPAP this afternoon. Around 2:15. She did pretty well with the switch. Now if she would just leave the prongs in her nose. About ever 15 minutes she manages to wiggle at least one of them out. When they were in though, her sats were still pretty good. The neonate is crossing his fingers. ME TOO!
Jaime is a crazy kid. As ever. Tried to help Nana with her ice cream sandwich. Too cute.
Sent my parents to the neighbor's garage sale this afternoon. $40 for a white crib. NICE! Too good to pass up, so at least Maryn has a place to sleep once we get to take her home. And yes, we checked the slats and all.
And the Princess was put on CPAP this afternoon. Around 2:15. She did pretty well with the switch. Now if she would just leave the prongs in her nose. About ever 15 minutes she manages to wiggle at least one of them out. When they were in though, her sats were still pretty good. The neonate is crossing his fingers. ME TOO!
Wednesday, May 27, 2009
ARGGGGGH!
Ok, so I'm trying to stay sane. But this just sucks. I've been fighting panic attacks for a few hours now, and news, although not that bad or anything, isn't helping. It feels like a cross between being terribly nervous, wound up on high levels of caffeine, eating rocks, plus being stepped on by an elephant. But not in the good way, like it was when I was young and dumb.
Found out that Maryn's caffeine level was on the low side, so no CPAP today. They bolused her and increased her daily dose in the hopes of trying it Thursday. Of course, she wasn't cooperating. She bradied at least 2 times that required bagging. Heart rate in the 60s and she wouldn't/couldn't get it back up on her own. Yeah, that doesn't help. Now tonight, come to find out that her head circumference went up a full 1/2 cm. The goal is 1 cm per WEEK. Oy. So now I'm worried that she needs to have her reservoir tapped again, and that they aren't going to notice or do it until after they try to get her on CPAP. And she WILL brady when they tap. And I don't know what nurse will have her Thursday - I know one of our favorites is definitely off. I wish I could just live at the hospital. With Jaime.
Found out that Maryn's caffeine level was on the low side, so no CPAP today. They bolused her and increased her daily dose in the hopes of trying it Thursday. Of course, she wasn't cooperating. She bradied at least 2 times that required bagging. Heart rate in the 60s and she wouldn't/couldn't get it back up on her own. Yeah, that doesn't help. Now tonight, come to find out that her head circumference went up a full 1/2 cm. The goal is 1 cm per WEEK. Oy. So now I'm worried that she needs to have her reservoir tapped again, and that they aren't going to notice or do it until after they try to get her on CPAP. And she WILL brady when they tap. And I don't know what nurse will have her Thursday - I know one of our favorites is definitely off. I wish I could just live at the hospital. With Jaime.
May 27
We have a 3 pounder! When she got weighed Monday night, she was up to 1350 grams, so 3 pounds exactly. And she actually gained one ounce last night too. Her cheeks are actually starting to get a little chub on them. Although you couldn't tell from the rest of her. Darn princess has absolutely NO butt, and her arms and legs are still the size of Barbie's. I got enough butt to share with both my kids, but NOOOOOOOOOO.
Today we may be trying CPAP again. Just waiting to hear results from her caffeine labs from yesterday before the decision is made.
Jaime is still a monkey. He'll stand and bounce on the couch, then literally launch himself face-first onto it. Then he laughs uncontrollably. It's so cute. Until he landed on me yesterday, hitting the spot where my PICC line was. Not so much fun for mommy.
Off to get ready for appointments, then scrapbooking and seeing my princess. Hey, anyone have good recommendations for good books? I'm about to finish the Twilight series and will need something to help me out of the vamp stupor.
Today we may be trying CPAP again. Just waiting to hear results from her caffeine labs from yesterday before the decision is made.
Jaime is still a monkey. He'll stand and bounce on the couch, then literally launch himself face-first onto it. Then he laughs uncontrollably. It's so cute. Until he landed on me yesterday, hitting the spot where my PICC line was. Not so much fun for mommy.
Off to get ready for appointments, then scrapbooking and seeing my princess. Hey, anyone have good recommendations for good books? I'm about to finish the Twilight series and will need something to help me out of the vamp stupor.
Friday, May 22, 2009
Yeah, yeah, yeah
Just for you Heather! :) Even though you already know most of this stuff since I talked to you yesterday!
Ok, so I know I didn't update for several days. 20 lashes with a wet noodle. I was in a bummer mood, all down and dumpy. So I didn't feel like updating. Nothing with Maryn or Jaime. Both are doing well. And I think I'm doing better.
Jaime is a monkey. Jumping on everything and everyone. Happy as a clam. He recently has discovered the joy of "stepping" to the window to check things out outside.
Maryn has officially gained one full pound since she was born. 1270 grams. 2 pounds 12 ounces. She's still vented, but they did that on purpose. Trying to give her a little bit of a break this week. If she does well over the long weekend, we may have another (and hopefully FINAL) try at CPAP as early as Tuesday.
Off the topic. At least of my kids. There is a family in the NICU that could use prayers too. I know prayers can work miracles because look what y'all have done for Maryn! Logan is just down the hall. He's the cutest, chubbiest thing. But he has some liver/intestinal issues. And his parents are 2+ hours away. They took off as much time as they could, but they had to go home. They only get to see him on Wednesdays and weekends. I can't even imagine. So if you wouldn't mind keeping him and his family in your prayers as well.
Ok, so I know I didn't update for several days. 20 lashes with a wet noodle. I was in a bummer mood, all down and dumpy. So I didn't feel like updating. Nothing with Maryn or Jaime. Both are doing well. And I think I'm doing better.
Jaime is a monkey. Jumping on everything and everyone. Happy as a clam. He recently has discovered the joy of "stepping" to the window to check things out outside.
Maryn has officially gained one full pound since she was born. 1270 grams. 2 pounds 12 ounces. She's still vented, but they did that on purpose. Trying to give her a little bit of a break this week. If she does well over the long weekend, we may have another (and hopefully FINAL) try at CPAP as early as Tuesday.
Off the topic. At least of my kids. There is a family in the NICU that could use prayers too. I know prayers can work miracles because look what y'all have done for Maryn! Logan is just down the hall. He's the cutest, chubbiest thing. But he has some liver/intestinal issues. And his parents are 2+ hours away. They took off as much time as they could, but they had to go home. They only get to see him on Wednesdays and weekends. I can't even imagine. So if you wouldn't mind keeping him and his family in your prayers as well.
Sunday, May 17, 2009
May 17
Ok. I'm tired, so I'm gonna try to make this quick and to the point.
1. a little blood in stool, or so they thought. 2 xrays showed nothing, but they are watching just to make sure. Pray for nothing.
2. still on vent. Satting pretty well with low support levels.
3. Still on diuretic, thus also still on sodium and potassium.
4. Gaining weight a little at a time. She's 2lbs 8oz right now (1150 grams). And on full bolus feeds.
5. bath time today with a princess rubber ducky. she then proceded to poop in the tub.
6. Jaime is a serious mexican jumping bean. And wanted to throw his train in church.
7. I still have a cold. Maybe brandy will clear it up.
1. a little blood in stool, or so they thought. 2 xrays showed nothing, but they are watching just to make sure. Pray for nothing.
2. still on vent. Satting pretty well with low support levels.
3. Still on diuretic, thus also still on sodium and potassium.
4. Gaining weight a little at a time. She's 2lbs 8oz right now (1150 grams). And on full bolus feeds.
5. bath time today with a princess rubber ducky. she then proceded to poop in the tub.
6. Jaime is a serious mexican jumping bean. And wanted to throw his train in church.
7. I still have a cold. Maybe brandy will clear it up.
Friday, May 15, 2009
May 15 still
Just got back from the hossy. Maryn is doing fine back on the freakin' vent. Just seeing the damn thing is starting to piss me off. Very low support - room air and 20 breaths a minutes. Low pressure settings too.
She's a little on the warm side, so they are keeping an eye on her. Oh God, please don't let my little girl come down with an infection! If that happens, will someone please just push me into the river?
Repeat brain ultrasound today came back stable, so the docs are thinking that wasn't the problem.
She was down to 2lbs 7oz last night, and she's the same now. She probably has a little more fluid to work off. And since she's on the diuretic, they are giving her sodium and potassium supplements again.
And I'm about to need a supplement of my own. Till tomorrow...
She's a little on the warm side, so they are keeping an eye on her. Oh God, please don't let my little girl come down with an infection! If that happens, will someone please just push me into the river?
Repeat brain ultrasound today came back stable, so the docs are thinking that wasn't the problem.
She was down to 2lbs 7oz last night, and she's the same now. She probably has a little more fluid to work off. And since she's on the diuretic, they are giving her sodium and potassium supplements again.
And I'm about to need a supplement of my own. Till tomorrow...
May 15
Yeah, yeah, yeah. I missed yesterday. Just shoot me now.
Maryn was put back on CPAP yesterday, as her vent settings were really low. Of course, that didn't last. Reintubated early this morning thanks to apnea and brady spells. I finally had to ask the doc if she's ever going to get off the vent. He says he's positive she will, but she may just need to be a little bigger. He is doing another brain ultrasound to see if the ventricles are bigger, which could also be interfering with the "remember to breathe" portion of her brain. I'll quiz them later today when I go in on the results.
And now I'm fighting the same freakin' cold that my dad and Jaime have. Oh joy. Like I said, just shoot me now.
Maryn was put back on CPAP yesterday, as her vent settings were really low. Of course, that didn't last. Reintubated early this morning thanks to apnea and brady spells. I finally had to ask the doc if she's ever going to get off the vent. He says he's positive she will, but she may just need to be a little bigger. He is doing another brain ultrasound to see if the ventricles are bigger, which could also be interfering with the "remember to breathe" portion of her brain. I'll quiz them later today when I go in on the results.
And now I'm fighting the same freakin' cold that my dad and Jaime have. Oh joy. Like I said, just shoot me now.
Wednesday, May 13, 2009
May 13
I need to find some creative way to title the posts. I suck.
Jaime definitely has a cold. Poor buggy! He only wants to eat yogurt-type stuff. At least it's not complete junk. If this cold lasts as long as it did with my dad, he should be feeling better by Friday. But for now, I have one serious cuddle-monster.
Maryn is doing well. She gained a bunch of weight again last night, so they are putting her back on the diuretic since a decent amount over the past few days is likely due to fluid retention. Remind me over the next several days that I just want her to stay 2lbs 5oz or more. I'm destined to freak even though I say I won't.
Brain ultrasound was stable. The ventricles are about the same size.
They weaned her vent this morning. They'll try to do a little more tomorrow morning (like 4AMish). If her blood gas after that is still good, we'll have "a serious discussion" about getting her off the vent and back on to CPAP. Hopefully for good. And yes, that was a quote from the neonate that called me this morning.
I did get to help give her a bath this afternoon. Of course, just as we were getting her wrapped in her blankie (we do swaddled bathing), she decided to poop in it. Great. She's such a stinker. Literally and figuratively. She really likes her baths, and she conks out shortly thereafter. Daddy is at the hospital now, probably holding her.
Ok, off to feed the munchin. Ta-ta.
Jaime definitely has a cold. Poor buggy! He only wants to eat yogurt-type stuff. At least it's not complete junk. If this cold lasts as long as it did with my dad, he should be feeling better by Friday. But for now, I have one serious cuddle-monster.
Maryn is doing well. She gained a bunch of weight again last night, so they are putting her back on the diuretic since a decent amount over the past few days is likely due to fluid retention. Remind me over the next several days that I just want her to stay 2lbs 5oz or more. I'm destined to freak even though I say I won't.
Brain ultrasound was stable. The ventricles are about the same size.
They weaned her vent this morning. They'll try to do a little more tomorrow morning (like 4AMish). If her blood gas after that is still good, we'll have "a serious discussion" about getting her off the vent and back on to CPAP. Hopefully for good. And yes, that was a quote from the neonate that called me this morning.
I did get to help give her a bath this afternoon. Of course, just as we were getting her wrapped in her blankie (we do swaddled bathing), she decided to poop in it. Great. She's such a stinker. Literally and figuratively. She really likes her baths, and she conks out shortly thereafter. Daddy is at the hospital now, probably holding her.
Ok, off to feed the munchin. Ta-ta.
Tuesday, May 12, 2009
May 12
Ok, priorities are shifting. I didn't do my scrapbook page today. Instead, here I am. Hopefully our social worker will think this is appropriate as well! I promise to do the page tomorrow. :)
Well, Jaime's coming down with a cold. My dad had one the past few days, and now Bug has it. Joy. Only thing we could get him to eat tonight was ice cream. At least that's not too bad considering how skinny he still is. Add tylenol to the mix, and I'm hoping he has a good night.
Maryn has had a busy day - mostly good. But lots of medical jargon to wade through.
First, they are taking her from constant feeding to bolus feeds. So she'll be getting 3 hours of food in 2 1/2. Then 1/2 hour off. Lather, rinse, repeat.
Her hematocrit number (something to do with red blood cells) were still a little low today, so she got her 2nd transfusion in 2 days. Yesterday, it was 31. Today, it was 35. So hoping the transfusion helped and tomorrow she'll be 40. Fingers crossed. But of course, then I start worrying that she'll gain too much water weight from the fluids. AAAAAAAACK!
Her blood gasses looked good, so they weaned her to a vent rate of 20. They did up the pressure support a touch, but it's still a good thing. The new neonate on our case is hoping for another try on CPAP (an improvement from venting) late this week. AKA tubes in nose instead of mouth. But her right upper lobe of her lung is looking a little congested with fluid. Something called atelectusis. Say that three times fast. But they are watching it and treating it. We'll probably have to do some diuretic stuff in the next several days, but the docs and RTs are good about making sure she's still doing well.
She did have an eye exam today too. She has what's called retinopathy of prematurity. All I know is it's something to do with blood vessels. They need to watch it, or it can get serious. But for now, her grade was better than I expected. Zone 2 and Grade 1. Yeah, she'll probably still end up with glasses, but she was already doomed to that with David and me as parents. Optho will come back in a week since she's at high risk for it getting worse. (If it did, laser surgery usually does the trick.)
She did have another brain ultrasound today, but we didn't have the results by the time I left. After holding her AGAIN for over an hour. Have I mentioned recently how freakin' adorable she is?
And if you have made it through my "short story," please go have a BIG shot of tequila for me. Extra salt.
Well, Jaime's coming down with a cold. My dad had one the past few days, and now Bug has it. Joy. Only thing we could get him to eat tonight was ice cream. At least that's not too bad considering how skinny he still is. Add tylenol to the mix, and I'm hoping he has a good night.
Maryn has had a busy day - mostly good. But lots of medical jargon to wade through.
First, they are taking her from constant feeding to bolus feeds. So she'll be getting 3 hours of food in 2 1/2. Then 1/2 hour off. Lather, rinse, repeat.
Her hematocrit number (something to do with red blood cells) were still a little low today, so she got her 2nd transfusion in 2 days. Yesterday, it was 31. Today, it was 35. So hoping the transfusion helped and tomorrow she'll be 40. Fingers crossed. But of course, then I start worrying that she'll gain too much water weight from the fluids. AAAAAAAACK!
Her blood gasses looked good, so they weaned her to a vent rate of 20. They did up the pressure support a touch, but it's still a good thing. The new neonate on our case is hoping for another try on CPAP (an improvement from venting) late this week. AKA tubes in nose instead of mouth. But her right upper lobe of her lung is looking a little congested with fluid. Something called atelectusis. Say that three times fast. But they are watching it and treating it. We'll probably have to do some diuretic stuff in the next several days, but the docs and RTs are good about making sure she's still doing well.
She did have an eye exam today too. She has what's called retinopathy of prematurity. All I know is it's something to do with blood vessels. They need to watch it, or it can get serious. But for now, her grade was better than I expected. Zone 2 and Grade 1. Yeah, she'll probably still end up with glasses, but she was already doomed to that with David and me as parents. Optho will come back in a week since she's at high risk for it getting worse. (If it did, laser surgery usually does the trick.)
She did have another brain ultrasound today, but we didn't have the results by the time I left. After holding her AGAIN for over an hour. Have I mentioned recently how freakin' adorable she is?
And if you have made it through my "short story," please go have a BIG shot of tequila for me. Extra salt.
Monday, May 11, 2009
May 11
Maryn did well today. She's up to 2lbs 5oz. Roughly 14 1/2 inches long. They didn't weigh her yet tonight, but still. She did need a little blood earlier today, as her hematocrit numbers were on the low side, but she's a trooper. I can tell that she HATES having that IV in her hand.
On a brighter note, we did get to hold her again today. Yup, that's right. I said WE. David went up to the hospital after we ran some errands to my work and held her for about 45 minutes. It was his turn, and I'm trying to be fair about it. I was taking the late shift today. But once I got there, Maryn's nurse JoAnn asked if I wanted to hold her too. DUH!!! She said she had been doing so well that we both could take a turn today. Over 90 minutes later, my Princess went back to sleep quickly in her bed. All snuggled up in her little outfit from our friends Amber, Jake and baby Marley.
On a brighter note, we did get to hold her again today. Yup, that's right. I said WE. David went up to the hospital after we ran some errands to my work and held her for about 45 minutes. It was his turn, and I'm trying to be fair about it. I was taking the late shift today. But once I got there, Maryn's nurse JoAnn asked if I wanted to hold her too. DUH!!! She said she had been doing so well that we both could take a turn today. Over 90 minutes later, my Princess went back to sleep quickly in her bed. All snuggled up in her little outfit from our friends Amber, Jake and baby Marley.
Intro
Ok, so I know lots of people have been wanting updates on the kids. So instead of creating a CarePage, which might end once Maryn comes home, I figured just go this route. It will take me a while to get the whole story down, as I'm still trying to come to terms with the situation, but I will.
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