The trip to Michigan went smoothly. Dave and I drove Chloe up on Thursday afternoon and spent the night at the Westin. They gave us a really good hospital rate of $72 so we were pretty happy with that. It was only 15 minutes from the hospital - pretty convenient. We had to be at the hospital at 8am for Chloe's 9:30 EUA (Examination Under Anesthesia). Chloe had the same Anesthesiologist as the first time. I drilled him about the anesthesia for about 15 minutes making sure I knew exactly what he planned to do under every possible circumstance and telling him every scap of information that I thought might be important to him. I was NOT going to have another surprise propofal "incident."** We then met with the surgeon. We've been patching Chloe's eyes to try and avoid lazy eye. He discusses with us the different schools of thought regarding this. Some doctors think there's a problem after 6 weeks of clouded vision and some after 9 weeks of clouded vision. We believe Chloe's had clouded vision for about 5 weeks so that comforted us a bit. He would go in for the examination and then come back to talk to us before beginning any procedure.
He returned with surprising news. After four weeks of retinologist visits and another week waiting for our appointment in Michigan, the blood is gone from Chloe's left eye. She does not need a vitrectomy. What a shock! Surprise! Great! Then he went on to explain that Chloe has a cataract that is clouding her vision. What a shock...surprise...not-so-great. She'll need surgery to correct the cataract but he doesn't do that surgery. We'll need to work with Chloe's opthamologist to get that correct.
So we find ourselves headed back to Dayton much more quickly than expected. I feel pressured to figure this out right away. We cancelled Chloe's Wednesday Synagis appointment because of Friday's anesthesia. It's now scheduled for this coming Monday afternoon. I'm worried, though, that Monday's synagis shot could delay possible cataract surgery by a few weeks I don't want to get the shot and then have them say, "Oh, we wish you'd told us about that shot. We could have gotten Chloe in for surgery tomorrow but now she has to wait two more weeks...". Unfortunately, the opthamologist was out of the office Friday. I spoke to his Technician and she said she'd try to get ahold of him at home but I never heard back. I know that putting off her Synagis shot is bad (this is her RSV preventative) but, if they can get her in for cataract surgery right away, I think I'd rather put off her Synagis another couple days and get the surgery. Of course, I have no idea what kind of timeline they can give me for surgery... I'll be burning up the phone lines right away Monday morning and in suspense until then. Any words of experience or advise would be much appreciated here! How bad is it to put off her shot another few days?
Until then we continue patching Chloe's eye and wait.
**He assured me that he would NOT use propofal for either the examination or the procedure (if they chose to do the vitrectomy) on Chloe and noted that it wouldn't even be a good choice for her case. Why they used it for her second EUA last time, he could not explain to me - I didn't dwell, though.
Saturday, March 20, 2010
Thursday, March 11, 2010
Dangit Dangit Dangit!!!
A few hours after discussing the delay on Chloe's eye I received a call from the Pediatrician's office. The nurse informed me that our Ped received the Swallow Study report and that she recommends we continue thickening Chloe's milk.
Um. No. I helpfully informed her that Chloe was already released from thickener by the Speech Therapist at the hospital.
She went to talk to the doctor and came back. Well, the doctor is not comfortable with the fact that there were 5 (slight) penetrations during the swallow study and she'd worry about aspirations (breathing the milk into her lungs) if we quit the thickener too soon. I argue that Chloe had to wait an extra hour to eat and was STARVING - eating with atypical ferocity - during the study. Plus, the speech therapist and radiologist noted that the penetrations were mild and came right back out (I'm practically begging them to see reason here...).
She talks to the doctor again and comes back. The doctor said that "if it were HER daughter she wouldn't take the risk of her aspirating and getting pnuemonia."
Well...shit. She played the Wild Card. Like I'm going to argue with that...
So we're back on thickener. It's really not a big deal once I got over the initial disappointment. In fact, I felt kind of silly arguing it with them. But... I did negotiate one breastfeeding per day (with extreme caution) so that's a good thing.
We THOUGHT we were on a roll this week. I can hear some obnoxious junior high voice in the back of my head yelling, "PSYYYCH!" Punk.
Um. No. I helpfully informed her that Chloe was already released from thickener by the Speech Therapist at the hospital.
She went to talk to the doctor and came back. Well, the doctor is not comfortable with the fact that there were 5 (slight) penetrations during the swallow study and she'd worry about aspirations (breathing the milk into her lungs) if we quit the thickener too soon. I argue that Chloe had to wait an extra hour to eat and was STARVING - eating with atypical ferocity - during the study. Plus, the speech therapist and radiologist noted that the penetrations were mild and came right back out (I'm practically begging them to see reason here...).
She talks to the doctor again and comes back. The doctor said that "if it were HER daughter she wouldn't take the risk of her aspirating and getting pnuemonia."
Well...shit. She played the Wild Card. Like I'm going to argue with that...
So we're back on thickener. It's really not a big deal once I got over the initial disappointment. In fact, I felt kind of silly arguing it with them. But... I did negotiate one breastfeeding per day (with extreme caution) so that's a good thing.
We THOUGHT we were on a roll this week. I can hear some obnoxious junior high voice in the back of my head yelling, "PSYYYCH!" Punk.
Michigan Delay
I received a call from the local retinalogist's nurse today. The exam/surgery will be the 19th (next Friday). The retinalogist originally said he wanted Chloe there this week or early next week but, apparently, there's some big conference going on in Vail next week. All of the surgeons in Detroit will be at this conference. Their schedules were all booked for this Friday in preparation for a week away and they'll be back just in time to take Chloe next Friday.
On the one hand I'm glad for the week delay because we get to spend it with my parents. On the other hand, I was under the impression that the longer we wait the more likely Chloe's vision will be damaged. I drilled the local nurse about it this morning (none of the doctors were available, of course) and she assured me that, if it were a problem to wait, the local doctor would have said something when they booked the surgery date. I was glad she was so "sure" of that but asked to have the doctor call me back, anyway. It's too bad the two doctors who've actually looked at Chloe's eyes this past month are both out of the office for a week. I missed a call back from a third doctor in their practice but she'll call me tomorrow.
She will surely tell me that the possible detrimental effect of waiting a few days is negligible compared to the benefit of going to the world renowned doctors in Detroit. I just want to hear her say that.
We'll be patching Chloe's good eye in the meantime.
On the one hand I'm glad for the week delay because we get to spend it with my parents. On the other hand, I was under the impression that the longer we wait the more likely Chloe's vision will be damaged. I drilled the local nurse about it this morning (none of the doctors were available, of course) and she assured me that, if it were a problem to wait, the local doctor would have said something when they booked the surgery date. I was glad she was so "sure" of that but asked to have the doctor call me back, anyway. It's too bad the two doctors who've actually looked at Chloe's eyes this past month are both out of the office for a week. I missed a call back from a third doctor in their practice but she'll call me tomorrow.
She will surely tell me that the possible detrimental effect of waiting a few days is negligible compared to the benefit of going to the world renowned doctors in Detroit. I just want to hear her say that.
We'll be patching Chloe's good eye in the meantime.
Wednesday, March 10, 2010
Michigan Here We Come
Well, I decided today that I have zero intuition. I had a really good feeling about today's eye exams. But, unfortunately, I suck. Chloe still has blood in her left eye. After a month, both the opthamologist and retinalogist are nervous. The concern is that the blood is blocking her vision in that eye. She's still developing her vision, synapses are connecting, etc. Inability to see because of blood could have long-term effects on her vision. They're sending Chloe to the experts in Michigan and anticipate that they'll to a vitrectomy. As of this moment we're waiting for the local nurse to hear back from the surgical scheduler in Michigan to tell us when they can fit Chloe into the schedule.
The ironic thing about this trip to Michigan is that my parents are coming from Texas for a week. They arrive Friday. If you recall, my parent's last week-long visit to Ohio (for Thanksgiving) coincided with our last trip to Michigan. Apparently, they have some kind of radar to know exactly when we'll be needing them and plan their trips accordingly. Thank God for my awesome parents.
As far as the vitrectomy goes - I don't know of any dangers/concerns inherent to the surgery itself. Of course, Chloe will be anaesthetised, intubated, and her eye will be sliced. I find none of these things appealing. But the vitrectomy itself should have no affect on her vision and she should heal from it. Hopefully, it will save her vision. I'm ahead of myself, though. They haven't even seen her. As of now we don't know when we're leaving or even if she'll have the surgery. I'll keep you up-to-date as much as possible.
The ironic thing about this trip to Michigan is that my parents are coming from Texas for a week. They arrive Friday. If you recall, my parent's last week-long visit to Ohio (for Thanksgiving) coincided with our last trip to Michigan. Apparently, they have some kind of radar to know exactly when we'll be needing them and plan their trips accordingly. Thank God for my awesome parents.
As far as the vitrectomy goes - I don't know of any dangers/concerns inherent to the surgery itself. Of course, Chloe will be anaesthetised, intubated, and her eye will be sliced. I find none of these things appealing. But the vitrectomy itself should have no affect on her vision and she should heal from it. Hopefully, it will save her vision. I'm ahead of myself, though. They haven't even seen her. As of now we don't know when we're leaving or even if she'll have the surgery. I'll keep you up-to-date as much as possible.
Tuesday, March 9, 2010
Swallow Study
Chloe passed her swallow study today. No more thickener in her milk. Yeah!
I still need to mix some powder formula into my breastmilk to boost the calories in her food. But I just might sneak in an attempt at breast feeding once a day or so. :-D
Tomorrow we visit the retinologist and opthamologist. If the blood has cleared out of her left eye we just may be able to ditch the eye patches, as well.
I still need to mix some powder formula into my breastmilk to boost the calories in her food. But I just might sneak in an attempt at breast feeding once a day or so. :-D
Tomorrow we visit the retinologist and opthamologist. If the blood has cleared out of her left eye we just may be able to ditch the eye patches, as well.
Monday, March 8, 2010
Chloe's 6 month Photos - Sneak Peek
My awesome friend, Angela, is also an awesome photographer. She was here Saturday for a photo shoot and posted a few pictures on her blog. She's done such a fabulous job! I'd love to wait for them all before posting here but am too excited to hold back. Check out my beautiful little girl...
http://dandeliondreamsphotography.blogspot.com/2010/03/some-pictures-for-chloe-6-months.html
Thank you Angela!!!!
http://dandeliondreamsphotography.blogspot.com/2010/03/some-pictures-for-chloe-6-months.html
Thank you Angela!!!!
Tuesday, March 2, 2010
Where to Begin
Oh my gosh. So much has happened in the last 9 days, since my sister left, that I don't even know where to begin. How about doctor's visits.
Last week Chloe saw the:
Pediatrician - 6 month checkup. All is good. :-)
Nutritionist - This is the NICU nutritionist who followed Chloe at Children's. We need to switch Chloe to Neosure because the Similac Special Care she's on now is not sold retail. She's aware of the Pulmonologist's desire to change Chloe's diet due to her lack-luster weight gain so she wants to do it before "they" try to do it. We'll be mixing Neosure powder with breastmilk to make a 30 calorie formula. Her current formula is 1/2 breastmilk mixed with liquid formula. I kind of like the new formula because it's ALL breastmilk with powder added. I just hope the high caloric content doesn't give her any problems. We're transitioning her slowly for now.
Opthamologist - Vision in her left eye is definitely improving but he suspects there's still blood in there. Let's keep patching.
Retinologist - Yep, there's still some blood. But it's probably not enough to warrant a vatrectomy. We need to continue to watch it because vitreal hemorrage puts her at risk for retinal detachment. I thought we were past that... So, we'll keep the patch on and take her back in two weeks.
And this week she saw the Pulmonologist. I was nervous after his "keep her on a short leash" comment. But guess what! She's gained 23 grams per day (up from 11) this month! I decided she likes it when Mama feeds her :-). And the Pulmonologist was downright pleased with that weight gain. We'll see him again in one month. At that time, we'll start to discuss weaning her from oxygen. If all goes well she could be off oxygen by May or June!
Chloe is now 20 1/2 inches long and 7lb 10.5oz :-)
In other Hendrickson business. I was dreadfully sick this weekend. I thought it was some sort of 24 hour stomach flu followed by mastitis (milk duct infection) but I saw the doctor today and he says the bathroom incident Sat. morning and fever could have been caused by the mastitis. We didn't know what it was Saturday morning (I didn't notice anything on my breast until Sunday afternoon) so I was quarantined to the back room all weekend. I thought I was better and was working my new lump out yesterday but started to feel sick again yesterday afternoon. I'm finally on antibiotics and working the lovely warm compress.
In addition, I went to the OB yesterday because I got paranoid all around about my health and had them check the placement of the IUD I got in October. Yep. It's in the wrong spot. They'll be removing it and replacing it. If you have an IUD you know just how painful the removal and placement processes are. I'm NOT looking forward to both at once that but also NOT wanting to get pregnant.
And then there's our most embarrassing medical problem. It was one of my worst-mom-ever moments. Two weeks ago. Solana and I were about to brush her teeth for bed and we were giggling and playing. I squeezed her shoulders in a shoulder-massage motion (which I knew tickled her) and she did something I didn't (but should have) forseen. She reflexively flung her head forward and straight into the marble counter. Screeming Solana. Bloody lip. Sore teeth. GUILTY Mom. None of her teeth were loose, though, so we thought she was ok. Then, last night I noticed one of her teeth turning brown. :-( She'll see the dentist tomorrow. I'm so nervous. How old are kids when they lose their baby teeth? How dark will this tooth get and how long will she have to have a brown tooth because of me? Oh - the guilt of hurting your child kinda sucks. I feel like such a jerk. Fortunately, she can't see it and doesn't mind (yet). Dave just read online that it will probably change back to white in 6 months or so. Oh I hope that happens before any kids point and laugh!
Last week Chloe saw the:
Pediatrician - 6 month checkup. All is good. :-)
Nutritionist - This is the NICU nutritionist who followed Chloe at Children's. We need to switch Chloe to Neosure because the Similac Special Care she's on now is not sold retail. She's aware of the Pulmonologist's desire to change Chloe's diet due to her lack-luster weight gain so she wants to do it before "they" try to do it. We'll be mixing Neosure powder with breastmilk to make a 30 calorie formula. Her current formula is 1/2 breastmilk mixed with liquid formula. I kind of like the new formula because it's ALL breastmilk with powder added. I just hope the high caloric content doesn't give her any problems. We're transitioning her slowly for now.
Opthamologist - Vision in her left eye is definitely improving but he suspects there's still blood in there. Let's keep patching.
Retinologist - Yep, there's still some blood. But it's probably not enough to warrant a vatrectomy. We need to continue to watch it because vitreal hemorrage puts her at risk for retinal detachment. I thought we were past that... So, we'll keep the patch on and take her back in two weeks.
And this week she saw the Pulmonologist. I was nervous after his "keep her on a short leash" comment. But guess what! She's gained 23 grams per day (up from 11) this month! I decided she likes it when Mama feeds her :-). And the Pulmonologist was downright pleased with that weight gain. We'll see him again in one month. At that time, we'll start to discuss weaning her from oxygen. If all goes well she could be off oxygen by May or June!
Chloe is now 20 1/2 inches long and 7lb 10.5oz :-)
In other Hendrickson business. I was dreadfully sick this weekend. I thought it was some sort of 24 hour stomach flu followed by mastitis (milk duct infection) but I saw the doctor today and he says the bathroom incident Sat. morning and fever could have been caused by the mastitis. We didn't know what it was Saturday morning (I didn't notice anything on my breast until Sunday afternoon) so I was quarantined to the back room all weekend. I thought I was better and was working my new lump out yesterday but started to feel sick again yesterday afternoon. I'm finally on antibiotics and working the lovely warm compress.
In addition, I went to the OB yesterday because I got paranoid all around about my health and had them check the placement of the IUD I got in October. Yep. It's in the wrong spot. They'll be removing it and replacing it. If you have an IUD you know just how painful the removal and placement processes are. I'm NOT looking forward to both at once that but also NOT wanting to get pregnant.
And then there's our most embarrassing medical problem. It was one of my worst-mom-ever moments. Two weeks ago. Solana and I were about to brush her teeth for bed and we were giggling and playing. I squeezed her shoulders in a shoulder-massage motion (which I knew tickled her) and she did something I didn't (but should have) forseen. She reflexively flung her head forward and straight into the marble counter. Screeming Solana. Bloody lip. Sore teeth. GUILTY Mom. None of her teeth were loose, though, so we thought she was ok. Then, last night I noticed one of her teeth turning brown. :-( She'll see the dentist tomorrow. I'm so nervous. How old are kids when they lose their baby teeth? How dark will this tooth get and how long will she have to have a brown tooth because of me? Oh - the guilt of hurting your child kinda sucks. I feel like such a jerk. Fortunately, she can't see it and doesn't mind (yet). Dave just read online that it will probably change back to white in 6 months or so. Oh I hope that happens before any kids point and laugh!
So that was pretty much our week in a nutshell. Lots of medical. In the end, though, this is what really matters right?
And this is where I have the CUTEST video of Chloe smiling...I started writing this post Tuesday morning and now it's Wednesday night. I've tried to upload the video several times today.... Now it's time for bed...
P.S. We went to the dentist today and Solana's tooth will be ok. It'll either stay a light shade of brown or return to it's normal color. It's not too obvious. I'm done beating myself up over it. :-)
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