A few months ago I was doing research via my fellow blogger, Megan's, blog. Her Crew's story contained enough similarities to Chloe's that it was actually extremely useful in preparing me for what awaited us. I remember reading her entry about throwing out her frozen supply of breast milk because her milk contained too much lipase - an enzyme that made the milk taste metallic and soapy (basically really gross) after being frozen and then thawed. I remember thinking, "Oh my gosh! If that happened to me I would FUH-REAK OUT!" Well, I'm borderline freaking out but not as bad as I imagined....
A few days ago I started dipping into my supply of frozen breast milk. Chloe is drinking more as she grows and I'm pumping less often so it was inevitable that I'd need a back up. I wasn't worried, though. I probably have 200 pounds of frozen milk in our deep freezer!
During one of my usual bottle temperature tests I dripped a few drops of milk on my wrist and then cleaned my wrist with my mouth. Yes, I taste my own breast milk on a daily basis. It's not so weird so stop making that face. Plus, I make a habit of tasting things that go into my children's mouths. Anyway, I noticed the milk had a weird fishy taste. The milk was from September so I thought, "That's odd. Maybe I ate fish that day...?" Then it happened again. And again. After the third bag of frozen milk I decided there was no period that I ate fish three days in a row in September. There's something wrong. Chloe never rejected the milk or had any kind of reaction to it so I wasn't too worried. I decided to do a taste test. Tasting the milk "straight" (it's usually mixed with Neosure), revealed the "fishy" taste times ten! What the heck is that?!? My fresh milk tasted good. Then I remembered Megan. She described her milk as soapy and metallic, though. I made Dave taste it because I wanted to rule out the possibility that the milk had just soured. He was less than pleased and made a face after tasting the fresh milk. I rolled my eyes and was about to say, "forget it." But then he tasted the frozen milk and used the word "metallic." CRAP!
The lactation consultant is off today and Chloe's nutritionist isn't familiar with this condition. (What? Something Crappy AND Rare happening to us? What a shocker! ;-) Based on my online research and from talking to Megan the milk should be safe. It's just a flavor issue. Megan and I are guessing that the Neosure flavor is covering up the lipase flavor just enough explaining Chloe's cooperation in drinking the yucky stuff. The nutritionist is sending out an all-points-bulletin to her nutritionist friends to ask if it's ok for Chloe to drink the milk and is checking with the Neo staff. In the meantime I'm using my February milk as backup. That has a less yucky taste. Time seems to have something to do with the intensity of the lipase.
So if they come back with the OK to feed Chloe my lipase milk I'm faced with a decision of what to do:
-Feed Chloe the old stuff before it gets even worse (while she'll still take it), letting the new stuff age in the freezer potentially making it unpalatable, as well. I could decrease my pumping to only two times a day - saving energy and requiring the use of more frozen milk quickly yet maintaining my ability to make milk...?
OR
-Start with the new stuff and expect to eventually throw out the old stuff since it would theoretically get worse with time.
I'm not good at making decisions....
Monday, April 12, 2010
Wednesday, April 7, 2010
Pulmonologist Visit
Chloe visited with my favorite doctor yesterday - the Nigerian pulmonologist with the cool accent. He was once again very impressed with her weight gain (she's over 10lbs! Gasp!)
His instructions: Turn off Chloe's oxygen for feedings. If she eats the same amount without tiring, at the same speed, keeps her color, etc., then continue daytime feeds without oxygen. After a week of success we can take her off oxygen during the day! She'll only need it at night! So exciting!
We'll see him again in 3 months :-)
His instructions: Turn off Chloe's oxygen for feedings. If she eats the same amount without tiring, at the same speed, keeps her color, etc., then continue daytime feeds without oxygen. After a week of success we can take her off oxygen during the day! She'll only need it at night! So exciting!
We'll see him again in 3 months :-)
Monday, April 5, 2010
Solana vs. Chloe
Who makes a better Popeye the sailor man? And how on earth can they look so different? Of course, Chloe's picture was taken a few weeks ago. I've heard she's starting to look like Solana now... :-)
Perspective
For some reason I was recently thinking about Solana's infancy. Shortly after we brought her home she was diagnosed with hip displasia. Meaning, her hips kept turning themselves out of the socket (or something like that). She was fitted with a brace to hold her legs in a position that would encourage them to stay in socket. Eventually (after 11 weeks) we were able to take the brace off and she's been fine ever since. The brace was slightly obnoxious. It was difficult to change her diaper, her legs were always spread in an awkward position, and we could only take it off for baths. I remember bringing her home from the doctor's office with it on and changing her diaper with it for the first time. I bawled. Seriously. I cried my eyes out. I felt so sorry for her and and embarrased to admit, felt sorry for myself. "Why can't I just have a normal baby," I thought. Oh my gosh.
Perspective, right? Not only has Chloe been through a million times more than Solana with her brace but she'll face a lot more challenge throughout her life. Do I feel sorry for myself. No way! Ok, well, maybe at times. But not very much and I get over it pretty quickly. I have to remember how lucky I am to even have Chloe. This experience has opened my eyes to see the blessings in the little things and remember how beautiful and blessed my life really is.
But, having said that, I recently reminded myself that every person's challenges are their own. As silly as it recently seemed that I was THAT upset over Solana's brace....well, that was my challenge at that time. Of course, I got over it quickly enough. I mean, I didn't cry every day for 11 weeks but it still kind of sucked. And I grant myself that.
I was talking to my friend John the other day. His puppy was really ill. A mutual friend told me he may lose his puppy and I was worried about my dear friend. Losing a pet is hard. I called him and happily learned that his puppy will be ok. John said, "but that's nothing compared to what you've been though." Sure you can't compare a sick child to a sick dog. Apples and oranges. But having a sick dog sucks big time! If that's what you're going through at that time you have every right to feel whatever emotion comes your way - no matter what your friends (or anyone in the world) is going through at that time. What's important to me, though, is to let that emotion run its course. Let it do what it will with me and then pick myself up and move on. Remember the blessings. Be thankful. And be happy.
Perspective, right? Not only has Chloe been through a million times more than Solana with her brace but she'll face a lot more challenge throughout her life. Do I feel sorry for myself. No way! Ok, well, maybe at times. But not very much and I get over it pretty quickly. I have to remember how lucky I am to even have Chloe. This experience has opened my eyes to see the blessings in the little things and remember how beautiful and blessed my life really is.
But, having said that, I recently reminded myself that every person's challenges are their own. As silly as it recently seemed that I was THAT upset over Solana's brace....well, that was my challenge at that time. Of course, I got over it quickly enough. I mean, I didn't cry every day for 11 weeks but it still kind of sucked. And I grant myself that.
I was talking to my friend John the other day. His puppy was really ill. A mutual friend told me he may lose his puppy and I was worried about my dear friend. Losing a pet is hard. I called him and happily learned that his puppy will be ok. John said, "but that's nothing compared to what you've been though." Sure you can't compare a sick child to a sick dog. Apples and oranges. But having a sick dog sucks big time! If that's what you're going through at that time you have every right to feel whatever emotion comes your way - no matter what your friends (or anyone in the world) is going through at that time. What's important to me, though, is to let that emotion run its course. Let it do what it will with me and then pick myself up and move on. Remember the blessings. Be thankful. And be happy.
Update
We went to Cincinnatti last Wednesday to have Chloe's eyes examined. The doctor agreed that she should have surgery to remove the cataract. He said there's still a tiny bit of blood and that he could also remove the vitreous (gel in her eye) and the blood would come out with the gel. But he recommends removing the cataract and leaving the small amount of blood behind to go away on its own. Her history of vitreous blood disippating on its own leads me to agree with this. No unnecessary surgery - thank you very much.
He does surgery the 2nd and fourth Wednesday of every month so she'll have it in a week and a half. This guy seems good. Kind of a jerk but that seems to be the norm these days. I'm not sure but I think all the good doctors have been watching 'House' lately and think it's cool to be impolite. Whatever. If he can fix Chloe's eye I'll be happy.
I didn't know this but removal of the cataract means removal of her lens. How can she see without a lens you may ask. She can't. She'll need to be fitted with a hard contact lens. Yep. That's right. I'll be placing a contact lens onto my infant daughter's eyeball so she can see. I don't know the details of this but I can only imagine. As much of a fit as Chloe throws when I put her patch on I'm sure the insertion of a contact lens will be a lovely calm process every day. HAHA..HA..Ha......ha....Sigh. We'll see how that goes. Until I talk to an opthamologist I won't really know the practical details. This will only last through elementary school, though. Toward the end of her elementary school days (that's when her eyes are done growing - for the most part) she'll be able to have a surgery to implant an artificial lens into her eye.
Now I'm off to call the opthamologist. I'm going to call a new one, though, because I'm not super duper pleased with her local one. I'm thinking the one at the Children's hospital (who also cares for one of the neonatologists at Chloe's birth hospital and my high risk OB's daughter) might be a good bet. Wish me luck!
He does surgery the 2nd and fourth Wednesday of every month so she'll have it in a week and a half. This guy seems good. Kind of a jerk but that seems to be the norm these days. I'm not sure but I think all the good doctors have been watching 'House' lately and think it's cool to be impolite. Whatever. If he can fix Chloe's eye I'll be happy.
I didn't know this but removal of the cataract means removal of her lens. How can she see without a lens you may ask. She can't. She'll need to be fitted with a hard contact lens. Yep. That's right. I'll be placing a contact lens onto my infant daughter's eyeball so she can see. I don't know the details of this but I can only imagine. As much of a fit as Chloe throws when I put her patch on I'm sure the insertion of a contact lens will be a lovely calm process every day. HAHA..HA..Ha......ha....Sigh. We'll see how that goes. Until I talk to an opthamologist I won't really know the practical details. This will only last through elementary school, though. Toward the end of her elementary school days (that's when her eyes are done growing - for the most part) she'll be able to have a surgery to implant an artificial lens into her eye.
Now I'm off to call the opthamologist. I'm going to call a new one, though, because I'm not super duper pleased with her local one. I'm thinking the one at the Children's hospital (who also cares for one of the neonatologists at Chloe's birth hospital and my high risk OB's daughter) might be a good bet. Wish me luck!
Happy Easter from Chloe
I am such a blogger slacker these days! 10 days since my last post? I'm going to lose all my followers!
Let me give you a little incentive to come back. Here's Chloe's Easter/Spring greeting to you
Thursday, March 25, 2010
Cincinnati for Cataract Surgery
It's unbelievable how complicated the treatment of Chloe's eye has become.
We were seeing the Retinologists and also the Opthamologist in Dayton. Then they sent us to the Retinologist in Detroit for the vitrectomy. He then sent us back to Dayton for treatment of Chloe's newly diagnosed cataract. But the opthamologist in Dayton informs me that, although he specializes in cataract surgery, the proper equipment to do cataract surgery on such a small baby does not exist in Dayton. He COULD do the surgery at one of the Dayton hospitals but 1. he doesn't have privileges there and 2. it's not a Children's Hospital so it's not ideal for Chloe. He's going to refer us to Cincinnati.
I immediately jumped on the phone with this, the fourth practice involved in Chloe's vision care, because I really want to get the ball rolling. My understanding is that the longer Chloe goes with impaired vision in her bad eye the more likely amblyopia (lazy eye) will set in. I spend the next two days constantly making phone calls (ALL the nurses now know me) and hovering around the phone waiting for return calls and thinking Chloe will get surgery by the end of this week. I finally speak to the head of pediatric opthamology in Cincinnati and, having reviewed Chloe's records, she is of the opinion that Chloe's eye is pretty much screwed up already and her cataract surgery is not emergency. They'll get us in for an examination next week and operation room the following week. This is not what I expected to hear. I try to convince her otherwise and move up the schedule...but to no avail. I'm in tears and completely freaked out. I call the local opthamologist and retinologist. The opthamologist agrees with Cincinnati. He says he doesn't have the power to make them do the surgery right away and, even if he did, he couldn't argue that it would make a difference because he didn't believe that. The retinologist says amblyopia is not his expertise - it's that of the opth. The division of jurisdiction between Opthamologists and Retinologists is very annoying, by the way. It was the retinologists that led me to believe we're in a hurry and now they say it's not their place to say.
So, after a few dozen phone calls and lots of frustration we are left waiting and patching. For what reason? I don't really know. It's just the only thing I can do at this point to help Chloe. Feeling a bit helpless and frustrated. Can you tell? At least we can continue to pray and hope for the best. We can also be glad that the retinologist she's scheduled with in Cincinnati is something special. Supposedly, he has the rare ability to bridge the responsibility between retinology and opthamology. If Chloe needs work in both the front and back of her eye he can do both (instead of sending her elsewhere). Dave researched him and says that he also practices in at the #1 nationally ranked pediatric opthamology hospital in the US. Oh...the next two weeks can't be over soon enough!
In the meantime, Chloe did receive her Synagis shot on Monday and, since she won't have surgery for at least two weeks, she received her six month vaccinations yesterday. It kind of disturbed me yesterday how calm I was as she was poked five times over the last three days. I was in tears every time Solana got shots as a baby. Now I hold Chloe while the retinologists uses a tool to pull/hold her eyelids apart for an eye exam and I contemplate turning up her oxygen as she turns purple screaming (you know the one that's silent because they're not breathing?) during her vaccinations. Should it be possible for a mother to be conditioned to her child's painful medical procedures? Sigh. I'm sure it's fine but just struck me as odd that I didn't cry. (Don't get me wrong. I haven't lost any of my motherly desire to make her feel better. I balked when the nurse wouldn't get another nurse to help her so they could give two shots at a time making the four shots go by faster. And I scooped up my poor distressed baby to make her feel better as soon as shots were done!)
We were seeing the Retinologists and also the Opthamologist in Dayton. Then they sent us to the Retinologist in Detroit for the vitrectomy. He then sent us back to Dayton for treatment of Chloe's newly diagnosed cataract. But the opthamologist in Dayton informs me that, although he specializes in cataract surgery, the proper equipment to do cataract surgery on such a small baby does not exist in Dayton. He COULD do the surgery at one of the Dayton hospitals but 1. he doesn't have privileges there and 2. it's not a Children's Hospital so it's not ideal for Chloe. He's going to refer us to Cincinnati.
I immediately jumped on the phone with this, the fourth practice involved in Chloe's vision care, because I really want to get the ball rolling. My understanding is that the longer Chloe goes with impaired vision in her bad eye the more likely amblyopia (lazy eye) will set in. I spend the next two days constantly making phone calls (ALL the nurses now know me) and hovering around the phone waiting for return calls and thinking Chloe will get surgery by the end of this week. I finally speak to the head of pediatric opthamology in Cincinnati and, having reviewed Chloe's records, she is of the opinion that Chloe's eye is pretty much screwed up already and her cataract surgery is not emergency. They'll get us in for an examination next week and operation room the following week. This is not what I expected to hear. I try to convince her otherwise and move up the schedule...but to no avail. I'm in tears and completely freaked out. I call the local opthamologist and retinologist. The opthamologist agrees with Cincinnati. He says he doesn't have the power to make them do the surgery right away and, even if he did, he couldn't argue that it would make a difference because he didn't believe that. The retinologist says amblyopia is not his expertise - it's that of the opth. The division of jurisdiction between Opthamologists and Retinologists is very annoying, by the way. It was the retinologists that led me to believe we're in a hurry and now they say it's not their place to say.
So, after a few dozen phone calls and lots of frustration we are left waiting and patching. For what reason? I don't really know. It's just the only thing I can do at this point to help Chloe. Feeling a bit helpless and frustrated. Can you tell? At least we can continue to pray and hope for the best. We can also be glad that the retinologist she's scheduled with in Cincinnati is something special. Supposedly, he has the rare ability to bridge the responsibility between retinology and opthamology. If Chloe needs work in both the front and back of her eye he can do both (instead of sending her elsewhere). Dave researched him and says that he also practices in at the #1 nationally ranked pediatric opthamology hospital in the US. Oh...the next two weeks can't be over soon enough!
In the meantime, Chloe did receive her Synagis shot on Monday and, since she won't have surgery for at least two weeks, she received her six month vaccinations yesterday. It kind of disturbed me yesterday how calm I was as she was poked five times over the last three days. I was in tears every time Solana got shots as a baby. Now I hold Chloe while the retinologists uses a tool to pull/hold her eyelids apart for an eye exam and I contemplate turning up her oxygen as she turns purple screaming (you know the one that's silent because they're not breathing?) during her vaccinations. Should it be possible for a mother to be conditioned to her child's painful medical procedures? Sigh. I'm sure it's fine but just struck me as odd that I didn't cry. (Don't get me wrong. I haven't lost any of my motherly desire to make her feel better. I balked when the nurse wouldn't get another nurse to help her so they could give two shots at a time making the four shots go by faster. And I scooped up my poor distressed baby to make her feel better as soon as shots were done!)
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