Sunday, November 1, 2009
Done Freaking Out
Just to let you know, I'm done freaking out. Feeling much better and less insane today. I guess this hasn't been my best week for maintaining a positive attitude. If nothing else, blogging makes me aware of that so I can reflect instead of brooding. We're on our way to church to pray, sing, think, kneel, sit, stand. You know, the usual Catholic stuff. God is good and He'll take care of us. I know that. I just need to remember it sometimes.
Saturday, October 31, 2009
Day 69 - Come on Man!
I was at the hospital for rounds this morning and listened to the Resident running down Chloe's status to the Neonatologist. It was reassuring to hear her tell him what she wanted to do and have him approve or correct her plans. Whew. Thanks for your work 27 year-old. Glad you're not the final approver on Chloe's care.
The neonatologist asked if Chloe is receiving milk with fortification and the Resident informed him that she's just on milk because of previous problems with the fortifier. I chimed in, "It's Hindmilk." Chloe's nurse then pointed out that my hindmilk was tested yesterday at 24 calories to which I quickly corrected - 24POINT EIGHT calories. At which, I expected to see his mouth drop open and hear him exclaim, "WOW! THAT'S GREAT!" To my annoyance, that didn't happen. He simultaneously tilted his head to one side and shrugged as if to say, "Well, that's great and all BUT..." Then pointed out that it's not just the calories that Chloe needs. It's the calcium and minerals for bone growth. Come on man! Give me just a little something here. Aren't you just slightly impressed? Oh well...
He agreed to leave her on milk alone for another day or so and then try to fortify again but even slower than last time. Sigh. We'll see about that. I certainly don't want to deny Chloe's bones the calcium and minerals they need but...you know. We also talked about how lactose intolerance runs in my family (Solana absolutely must have two big cups of warm milk every day and we had to buy the lactose free stuff until very recently.) Plus, my mom and sister can't even look at the stuff. I'm now on a low lactose and no raw or gas-causing vegetables for the time being. We want to make sure that, if Chloe responds negatively again, it's not due to any bad stuff in my milk.
Oh, and Chloe's daytime primary passed her observations with all "Meets" or "Exceeds" expectations. :-) She's also had 33+ years as a NICU nurse and is great so far. I think we'll work well together. If only I can get her to stop calling me Mrs. Hendrickson... ;-)
The neonatologist asked if Chloe is receiving milk with fortification and the Resident informed him that she's just on milk because of previous problems with the fortifier. I chimed in, "It's Hindmilk." Chloe's nurse then pointed out that my hindmilk was tested yesterday at 24 calories to which I quickly corrected - 24POINT EIGHT calories. At which, I expected to see his mouth drop open and hear him exclaim, "WOW! THAT'S GREAT!" To my annoyance, that didn't happen. He simultaneously tilted his head to one side and shrugged as if to say, "Well, that's great and all BUT..." Then pointed out that it's not just the calories that Chloe needs. It's the calcium and minerals for bone growth. Come on man! Give me just a little something here. Aren't you just slightly impressed? Oh well...
He agreed to leave her on milk alone for another day or so and then try to fortify again but even slower than last time. Sigh. We'll see about that. I certainly don't want to deny Chloe's bones the calcium and minerals they need but...you know. We also talked about how lactose intolerance runs in my family (Solana absolutely must have two big cups of warm milk every day and we had to buy the lactose free stuff until very recently.) Plus, my mom and sister can't even look at the stuff. I'm now on a low lactose and no raw or gas-causing vegetables for the time being. We want to make sure that, if Chloe responds negatively again, it's not due to any bad stuff in my milk.
Oh, and Chloe's daytime primary passed her observations with all "Meets" or "Exceeds" expectations. :-) She's also had 33+ years as a NICU nurse and is great so far. I think we'll work well together. If only I can get her to stop calling me Mrs. Hendrickson... ;-)
Pump Pump Pumping
We have a really nice lady who comes to our house for two hours every Friday morning to clean the bathrooms and carpets/floors. Solana loves to chat with her (even though I try to stop her - I mean, I only get her for two hours for pete's sake)! Anyway, I was pumping yesterday during her visit and Solana kept coming in to talk to me and leaving the door open so I kept reminding her to shut the door. Finally, she asked, "Why do you want the door shut?" In my annoyance at having to remind her so many times I blurted out, "Because I'm pumping and I don't want Miss Karen to see my boobies!" Of course, I walked into the kitchen 5 minutes later and heard Solana saying, "My Mommy's Pump-Pump-Pumping and she doesn't want you to see her boobies!" I couldn't help but crack up, along with Karen....
Trying not to freak out
People have recently asked me, "Do you have any other children?" I always answer, "Yes, we have identical twins. One is in heaven and the other is in the hospital." I usually end up answering some questions and giving a brief explanation of TTTS and update on Chloe's status. Solana has heard this many times and now gives her own version of the story when asked if she has brothers and sisters.
Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day.
Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away.
My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart.
I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me.
I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really.
Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day.
Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away.
My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart.
I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me.
I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really.
Day 68 - Full feeds...again!
I don't have too much time to write. It's 7:30am and I need to get going to catch part of Chloe's 8am care. I get to help with diapers, thermometers, etc. these days if I'm around. Plus, I finally get to see her primary day nurse in action. I didn't request this woman. She just signed up for Chloe, which makes me nervous. I guess I'm going to "observe" her (for all you teacher-types).
She's up to full feeds. They tested my hindmilk again yesterday. Get this. 24.8 calories! Just call me Bessie. I only put out the premium stuff! They assume milk to be 20 calories and wanted to add fortifier to get her up to 24 or 25. Hmmmm.
The only other change is they reduced her breaths per min. to 28 to "test" her. All her blood gases have remained steady. CO2 is JUST under the max acceptable levels so they want to see if she can maintain. Prayers for her!
Love ya! Gotta run!
She's up to full feeds. They tested my hindmilk again yesterday. Get this. 24.8 calories! Just call me Bessie. I only put out the premium stuff! They assume milk to be 20 calories and wanted to add fortifier to get her up to 24 or 25. Hmmmm.
The only other change is they reduced her breaths per min. to 28 to "test" her. All her blood gases have remained steady. CO2 is JUST under the max acceptable levels so they want to see if she can maintain. Prayers for her!
Love ya! Gotta run!
Friday, October 30, 2009
Day 67 - Stable at 6cc's
Chloe had a pretty uneventful day 67. They increased her feeds to 6cc's per hour instead of the 8cc's planned (because her belly had increased in girth a bit) but her belly remains soft and she has good bowel sounds. These are both good things.
Respiratory-wise she remains stable and at the same place she's been for several days. We're still waiting for her to grow, mature those lungs, and get stronger so that they can start weaning her. She's still not ready, though.
Dave and I were present during the opthamologist's visit and he explained to us that Chloe's not actually showing signs of ROP. It's just that the blood vessels on her retina are still growing and he needs to watch her eyes until they finish growing. Here's how he explained ROP to me: Imagine the retina as a disc shape in the back of the eye. Blood vessels need to grow out from the center of the disc to the edges. The blood vessels need to remain in/on the disc. If they get "confused" and start growing out from/up off of the disc and toward the front of the eye that is ROP. Chloe's vessels are still growing correctly. It's just that they haven't finished growing, yet, so he needs to keep watching them. Why the nurse told Dave that she was headed in the direction of laser surgery, I don't know. It could happen but it's not the case as of now.
Here's another lovely shot of Chloe's beautiful eyes to brighten up your day:
As I mentioned, Dave and I got to go to the hospital at the same time yesterday. You may have wondered how we managed that one... My friend, Angela (who lives up to her name), picked up Solana and took her to their house for a little halloween party for her girls and Solana. Dave and I joined later for some yummy chili and cornbread. (Do you ever want a recipe for something because it's so good but don't because you know you'll pig out on it if you can make it? A pan of that cornbread would NOT help me toward that "last 12 pounds" goal! :-P )
Here's a picture of our Little Bo Peep on her way out the door:
Respiratory-wise she remains stable and at the same place she's been for several days. We're still waiting for her to grow, mature those lungs, and get stronger so that they can start weaning her. She's still not ready, though.
Dave and I were present during the opthamologist's visit and he explained to us that Chloe's not actually showing signs of ROP. It's just that the blood vessels on her retina are still growing and he needs to watch her eyes until they finish growing. Here's how he explained ROP to me: Imagine the retina as a disc shape in the back of the eye. Blood vessels need to grow out from the center of the disc to the edges. The blood vessels need to remain in/on the disc. If they get "confused" and start growing out from/up off of the disc and toward the front of the eye that is ROP. Chloe's vessels are still growing correctly. It's just that they haven't finished growing, yet, so he needs to keep watching them. Why the nurse told Dave that she was headed in the direction of laser surgery, I don't know. It could happen but it's not the case as of now.
Here's another lovely shot of Chloe's beautiful eyes to brighten up your day:
As I mentioned, Dave and I got to go to the hospital at the same time yesterday. You may have wondered how we managed that one... My friend, Angela (who lives up to her name), picked up Solana and took her to their house for a little halloween party for her girls and Solana. Dave and I joined later for some yummy chili and cornbread. (Do you ever want a recipe for something because it's so good but don't because you know you'll pig out on it if you can make it? A pan of that cornbread would NOT help me toward that "last 12 pounds" goal! :-P )
Here's a picture of our Little Bo Peep on her way out the door:
Wednesday, October 28, 2009
Day 66 - Half Feeds Again
Chloe's intestines looked less dilated (full of gas/bloated) in her x-ray this morning so they decided to go ahead and start her on half feeds again. That was a big relief because her nurse last night said they usually keep them off feeds for 7 days when they have problems. "7 days?!?" I thought, "Are you kidding me?"
(This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU...
As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby.
This picture was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!?
This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
(This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU...
As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby.
The plan is to increase her feeds as she tolerates them and then leave her on milk alone for a couple of days once she's on full feeds. I was very happy to hear that. Prior to this conversation I had decided to insist on milk only for at least three days before even considering fortifier again. So very reassuring they were already on that wavelength! I would tell them to forget the fortifier but they say she needs extra calcium and minerals for her bones because, due to the extended TPN nutrition, she's behind the curve on bone growth. We'll see how it goes. I think I'm going to be extremely active in he decision-making process on fortifier from now on. We'll be moving forward much more slowly than I think they anticipate. Fortunately, she's at least getting some extra calories from my hind milk. Which is, by the way, an extremely huge pain in the butt to gather! But soooo worth it if it helps my sweetness grow!
In other news, the opthamologist paid a visit yesterday. With all the belly troubles I had forgotten to ask for the results but also thought we were in the clear. Apparently, they saw something and think she might be on her way to needing laser surgery. I didn't think she would develop eye troubles now but it seems she can. The report was via a nurse, of course, and they can't ever seem to make out the opthamologist's notes, so we'll need to wait until he returns tomorrow to get more info. Fingers crossed that it goes well tomorrow!
This picture was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!?
This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
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