The kids and I are heading west tomorrow for Carmenita's birthday party. I'm anxious to post about 9 days and 3600 miles of single parenting.
Wish me luck!
Take care,
Kris
Tuesday, July 29, 2008
Monday, July 28, 2008
Officially kind of over it
People need to sometimes leave me alone in public. I'd like to go to the store or out to eat without the attention. I want to be anonymous again. I want to live my life with my family without feeling like I'm being watched the entire time. It's hard to explain.
Greg and I took the kids out to eat this weekend and this woman (who, of course, has twin boys herself) tried to tell me they didn't look enough alike to be identical. She tried to tell me that maybe there was something "in between" identical and fraternal. Really??? I tried explaining TTTS, blah blah blah, and - here's where I get frustrated by attention - she completely ignored me. People come by, just want to talk about their own experience with twins or to tell me that they are so glad they didn't have twins or whatever.
They are just driving me a little crazy.
And aren't twins common enough now that people would be used to seeing them? I don't get it. I really don't get it. And...if one more person asks me if they are twins....I'm going to explode!!
Okay, sorry, had to rant a bit :)
Take care,
Kris
Greg and I took the kids out to eat this weekend and this woman (who, of course, has twin boys herself) tried to tell me they didn't look enough alike to be identical. She tried to tell me that maybe there was something "in between" identical and fraternal. Really??? I tried explaining TTTS, blah blah blah, and - here's where I get frustrated by attention - she completely ignored me. People come by, just want to talk about their own experience with twins or to tell me that they are so glad they didn't have twins or whatever.
They are just driving me a little crazy.
And aren't twins common enough now that people would be used to seeing them? I don't get it. I really don't get it. And...if one more person asks me if they are twins....I'm going to explode!!
Okay, sorry, had to rant a bit :)
Take care,
Kris
Thursday, July 24, 2008
TTTS Everywhere
Not a ton to report. The girls have been doing well in therapy. Both are rolling quite a bit and starting to sit up with support. They are also doing some pre-crawling moves. Clara had a pulmonology appointment today and all was well there as well. Doc said not to be disappointed if she needed to go back on the oxygen in the fall/winter if she gets a respiratory infection. Otherwise, all looked good and he said again that he was surprised at the pace of her progress. While were at the hospital, I took the girls up to visit some of the nurses from Perinatal and the ICN. The hospital coffee shop lady even recognized the girls and me which....kind of makes me hate my life just a little bit :)
In the past week I've met two people who have sets of identical grandchildren - our exterminator and some random lady at Target (seriously...I can't go in public without people talking to me. Ask my friend Lisa who went out with me. I'm a circus act everywhere I go). Anyway, both of them asked me questions which made me realize right away that their grandchildren didn't come into the world easily. Questions that made me realize they were in the ultra exclusive club called NICU Baby Survivor Club. Our exterminator's first question was, "How was your pregnancy?" Big red flag that his daughter's was not a healthy one either - she was in the hospital for about 4 weeks on bedrest and delivered 8 weeks early. Her kids were 2 lbs and 3lbs and suffered from TTTS. One of the girls even had to have surgery in the NICU because one of her ovaries wouldn't descend (or something like that...I didn't get all the details). The random Target lady asked me, "How much did they weigh when they were born?" Another dead give away that her daughter's pregnancy didn't go as expected. Her grandsons were born 6 weeks early and were 3 lbs and 5 lbs at birth- pretty discrepant and yet another set of TTTS survivors. While I was at the NICU this morning one of the doctors told me that about a month ago they had 3 sets of TTTS babies at the same time. I feel surrounded by my identical twin, TTTS surviving peeps.
Okay, on to photos and videos. Enjoy!
Girls again (you can tell it's a farm because there is a chicken off to the left)
Alex feeding goats
Alex at the Butterfly Pavilion with a tarantula on his hand
Video of Evelyn (in yellow) trying to crawl
In the past week I've met two people who have sets of identical grandchildren - our exterminator and some random lady at Target (seriously...I can't go in public without people talking to me. Ask my friend Lisa who went out with me. I'm a circus act everywhere I go). Anyway, both of them asked me questions which made me realize right away that their grandchildren didn't come into the world easily. Questions that made me realize they were in the ultra exclusive club called NICU Baby Survivor Club. Our exterminator's first question was, "How was your pregnancy?" Big red flag that his daughter's was not a healthy one either - she was in the hospital for about 4 weeks on bedrest and delivered 8 weeks early. Her kids were 2 lbs and 3lbs and suffered from TTTS. One of the girls even had to have surgery in the NICU because one of her ovaries wouldn't descend (or something like that...I didn't get all the details). The random Target lady asked me, "How much did they weigh when they were born?" Another dead give away that her daughter's pregnancy didn't go as expected. Her grandsons were born 6 weeks early and were 3 lbs and 5 lbs at birth- pretty discrepant and yet another set of TTTS survivors. While I was at the NICU this morning one of the doctors told me that about a month ago they had 3 sets of TTTS babies at the same time. I feel surrounded by my identical twin, TTTS surviving peeps.
Okay, on to photos and videos. Enjoy!
Holding hands
Sunflower Farm pictures: Alex on a pony
Girls being smiley (Clara left, Evelyn right)
Girls again (you can tell it's a farm because there is a chicken off to the left)
Alex feeding goats
Alex at the Butterfly Pavilion with a tarantula on his hand
Video of Evelyn (in yellow) trying to crawl
Video of Alex "dancing"
Wednesday, July 9, 2008
Therapy update and photos
The girls had an excellent therapy appointment today. The PT said they are doing things she wouldn't have expected from them for another 2 or 3 months. She also said that about half of preemie moms give up by now - so big applause for me. She even asked what advice I'd give to moms to keep them working intensively. My answer is all over the place...Certainly it has helped a lot to get positive feedback from the PT. It also helps that I quit my job and can spend hours and hours everyday with the girls. But mostly I think it helped that I knew ahead of time that the girls would be premature and would need early intervention therapy. I think it also helps that I'm not a first time mom (hearing my babies cry doesn't hurt as much this time around so I can continue therapy longer than new moms probably) and I'm not a first time therapy mom. I've been through this with Alex and I understand how important early intervention is both from personal experience and because of what I used to do for a living. So, I didn't have any great advice. I think my life just followed a path that allows me to deal with intensive therapy. And, by the way, I'm aware that it could be a lot more - families of kids with autism will often spend 40 hours a week in therapy.
Oh...also... funny twins story. I had Clara on her back and Evelyn next to her on her tummy. I left the room for a minute and heard a crazy loud scream. I came running in to find that Evelyn had shimmied about 90 degrees and way chewing on Clara's hand. Clara, understandably, was not a fan of this new arrangement.
Anyway, moving on to some pictures. Please to enjoy!
Clara
Evelyn
Kids on the 4th
Ripley on the mend
Alex as a pirate
Take care,
Oh...also... funny twins story. I had Clara on her back and Evelyn next to her on her tummy. I left the room for a minute and heard a crazy loud scream. I came running in to find that Evelyn had shimmied about 90 degrees and way chewing on Clara's hand. Clara, understandably, was not a fan of this new arrangement.
Anyway, moving on to some pictures. Please to enjoy!
Sharing a toy (Clara left, Evelyn right)
Clara
Evelyn
Kids on the 4th
Ripley on the mend
Alex as a pirate
Take care,
Kris
Friday, July 4, 2008
Planning ahead - TTTS Race for Hope
The TTTS (Twin to Twin Transfusion Syndrome) Race for Hope is coming to Denver on November 9th. You can check out this link for more information: http://www.fetalhope.org/ttts-race-for-hope.html
In yet another "not ha-ha funny" moment of my recent life, I'll be doing my first 5K for a condition that actually affected my life. Sure, I did the Alzheimer walk in memory of my grandfather, but this one feels different. More close to my immediate life I guess. Amy and I used to run these 5Ks all the time just because we liked running. I always found them touching and I was glad to be part of them - don't get my waterworks started talking about the Organ Donor one where the family of the donor child met the family of the recipient...man, that was one of the most emotional things I've ever witnessed - and I'm a NICU mom who cried every day for 50 straight days. So you know it was emotional :) Anyway, this race will be different for me because I'll complete it in honor my little girls. With all the other issues Clara and Evelyn have had, it's easy to forget they are TTTS survivors. Let's see if I can get through it without crying.
Other TTTS races will also be held. I encourage anyone near these areas to attend or to donate a pledge.
September 20, 2008 - Charlotte, NC
September 28, 2008 - Kirkland, WA
November 9, 2008 - Denver, CO
2008/2009 - Houston, TX
March 1, 2009 - Anaheim, CA
Spring 2009 - Boston
2009 Tampa
I'll close with a description of TTTS for those who may be unfamiliar:
TTTS is a serious, progressive disorder that affects up to 15% of MC twins. The twins do not have malformations, but one transfuses the other through a particular blood vessel connection. In this situation, an artery from the donor twin enters the placental substance to exchange oxygen and nutrients. Unfortunately, the corresponding vein returns "by mistake" to the other twin (the recipient) via this arterio-venous connection.
In Twin to Twin Transfusion Syndrome (TTTS) the donor twin responds by partially shutting down blood supply to many of its internal organs, especially the kidneys, has reduced urine output and therefore a small amniotic fluid volume (oligohydramnios) in its amniotic cavity. The recipient responds to the blood transfusion by producing excessive amounts of urine, and is surrounded by a large volume of amniotic fluid (polyhydramnios). It is the combination of oligohydramnios/polyhydramnios that suggests the diagnosis of TTTS.
The twins are often discrepant in size, as well, with significant discordance in estimated fetal weights. The recipient's blood becomes thick and difficult to pump around the body, and this can result in heart failure, generalized soft tissue swelling (hydrops) and fetal death. Because of the blood vessel connections across the placenta, if one twin dies, the co-twin faces significant risk for death or damage to vital organs. If a co-twin survives, there is a high risk of brain injury. Without treatment, about 70-80% of twins with TTTS will die. Survivors may have injuries to their brains, hearts and kidneys.
Take care,
Kris
In yet another "not ha-ha funny" moment of my recent life, I'll be doing my first 5K for a condition that actually affected my life. Sure, I did the Alzheimer walk in memory of my grandfather, but this one feels different. More close to my immediate life I guess. Amy and I used to run these 5Ks all the time just because we liked running. I always found them touching and I was glad to be part of them - don't get my waterworks started talking about the Organ Donor one where the family of the donor child met the family of the recipient...man, that was one of the most emotional things I've ever witnessed - and I'm a NICU mom who cried every day for 50 straight days. So you know it was emotional :) Anyway, this race will be different for me because I'll complete it in honor my little girls. With all the other issues Clara and Evelyn have had, it's easy to forget they are TTTS survivors. Let's see if I can get through it without crying.
Other TTTS races will also be held. I encourage anyone near these areas to attend or to donate a pledge.
September 20, 2008 - Charlotte, NC
September 28, 2008 - Kirkland, WA
November 9, 2008 - Denver, CO
2008/2009 - Houston, TX
March 1, 2009 - Anaheim, CA
Spring 2009 - Boston
2009 Tampa
I'll close with a description of TTTS for those who may be unfamiliar:
TTTS is a serious, progressive disorder that affects up to 15% of MC twins. The twins do not have malformations, but one transfuses the other through a particular blood vessel connection. In this situation, an artery from the donor twin enters the placental substance to exchange oxygen and nutrients. Unfortunately, the corresponding vein returns "by mistake" to the other twin (the recipient) via this arterio-venous connection.
In Twin to Twin Transfusion Syndrome (TTTS) the donor twin responds by partially shutting down blood supply to many of its internal organs, especially the kidneys, has reduced urine output and therefore a small amniotic fluid volume (oligohydramnios) in its amniotic cavity. The recipient responds to the blood transfusion by producing excessive amounts of urine, and is surrounded by a large volume of amniotic fluid (polyhydramnios). It is the combination of oligohydramnios/polyhydramnios that suggests the diagnosis of TTTS.
The twins are often discrepant in size, as well, with significant discordance in estimated fetal weights. The recipient's blood becomes thick and difficult to pump around the body, and this can result in heart failure, generalized soft tissue swelling (hydrops) and fetal death. Because of the blood vessel connections across the placenta, if one twin dies, the co-twin faces significant risk for death or damage to vital organs. If a co-twin survives, there is a high risk of brain injury. Without treatment, about 70-80% of twins with TTTS will die. Survivors may have injuries to their brains, hearts and kidneys.
Take care,
Kris
Thursday, July 3, 2008
She's Off!
Just got the call from Clara's doc and she did well enough on her room air test that she can come off oxygen completely. Hurray!!!!!!!!!!!! She averaged 93% and spent 0.7% of the time <88%.
She'll have to go back on if she gets a cold or if we go to the mountains or something, but otherwise, she's off!!!! Hurray!! Hurray!! Hurray!!
...although this will make identifying her in photographs a little trickier. I always used her cannula stickers as the identifier :)
She'll have to go back on if she gets a cold or if we go to the mountains or something, but otherwise, she's off!!!! Hurray!! Hurray!! Hurray!!
...although this will make identifying her in photographs a little trickier. I always used her cannula stickers as the identifier :)
Wednesday, July 2, 2008
Thanks for the braces, Mr. Binky
Alex went to his first dentist appointment yesterday. Dr. Lexie's Dad showed me where we need to do a better job brushing his teeth (back molars, in case you were curious). He also showed me the damage the pacifier did to his teeth. His overbite is pretty bad and will eventually need braces to correct. Oh -and for now his front teeth are fine and can stay around. He smacked them pretty hard a couple months ago and I was worried they'd need to be yanked. Overall though, a successful visit. Alex didn't freak out and they aren't any cavities. Dr. Lexie's Dad also gave each girl a toothbrush since they're both now rocking two teeth.
I started my thyroid replacement meds today. Pop quiz... What causes fatigue, lethargy, difficulty losing weight, difficulty concentrating, forgetfulness, and moodiness? If you answered, "Having twins, you idiot!" You'd be correct.
If you add a follow-up question, "...and also cold intolerance, light sensitivity, joint pain, lightheadedness, vertigo, and a wonky menstrual cycle?" Well, then, one blood test later, you get a whole new answer called hypothyroidism. It's not a big deal. Seems like everyone has it and it least it explains some of the symptoms I've been having. I was pretty careful not to talk about how tired I've been because it seemed stupid when there was a clear reason (make that two clear reasons) for me feeling so run down. I had even justified the vertigo and lightheadedness as happening because I'm on the floor all the time with the girl and standing up was hard on me. And that light sensitivity? Clearly it's because I'm inside most of the time so of course the sunlight will bother me. The joint pain? Well, I am picking up babies all day. ...and so on. Anyway, at least I have an explanation and there's treatment.
Baby girl updates - They've been enjoying sweet potatoes and applesauce quite a bit. They get furious when you have to stop for a moment to feed the other one. It's pretty funny and I hear circus music plying in the background as I frantically try to shovel food into each of their mouths at a rate that is acceptable to them. I'm going to start making my baby food soon. I made an attempt with Alex to make his baby food and had to give up because of lack of freezer storage. Now that we have another freezer at the house I'm going to give it a try again. Feeding these girls is just really, really expensive. We're spending about $100 a week on formula and I need to cut some costs somewhere. And since I can operate a blender, I figured baby food was a good place to start.
The PT came by for their weekly visit on Tuesday. She's happy with their progress and she was especially happy to see that Evelyn's neck issues finally look like they are starting to resolve. Clara is starting to bring toys together in both hands. Evelyn is starting to kick off on her feet (a pre-crawling movement). Both girls are starting to roll from back to front.
That's it for now. I just got a new camera and I have some new photos to post but it'll be a few days before I can motivate to load the software.
Take care,
Kris
I started my thyroid replacement meds today. Pop quiz... What causes fatigue, lethargy, difficulty losing weight, difficulty concentrating, forgetfulness, and moodiness? If you answered, "Having twins, you idiot!" You'd be correct.
If you add a follow-up question, "...and also cold intolerance, light sensitivity, joint pain, lightheadedness, vertigo, and a wonky menstrual cycle?" Well, then, one blood test later, you get a whole new answer called hypothyroidism. It's not a big deal. Seems like everyone has it and it least it explains some of the symptoms I've been having. I was pretty careful not to talk about how tired I've been because it seemed stupid when there was a clear reason (make that two clear reasons) for me feeling so run down. I had even justified the vertigo and lightheadedness as happening because I'm on the floor all the time with the girl and standing up was hard on me. And that light sensitivity? Clearly it's because I'm inside most of the time so of course the sunlight will bother me. The joint pain? Well, I am picking up babies all day. ...and so on. Anyway, at least I have an explanation and there's treatment.
Baby girl updates - They've been enjoying sweet potatoes and applesauce quite a bit. They get furious when you have to stop for a moment to feed the other one. It's pretty funny and I hear circus music plying in the background as I frantically try to shovel food into each of their mouths at a rate that is acceptable to them. I'm going to start making my baby food soon. I made an attempt with Alex to make his baby food and had to give up because of lack of freezer storage. Now that we have another freezer at the house I'm going to give it a try again. Feeding these girls is just really, really expensive. We're spending about $100 a week on formula and I need to cut some costs somewhere. And since I can operate a blender, I figured baby food was a good place to start.
The PT came by for their weekly visit on Tuesday. She's happy with their progress and she was especially happy to see that Evelyn's neck issues finally look like they are starting to resolve. Clara is starting to bring toys together in both hands. Evelyn is starting to kick off on her feet (a pre-crawling movement). Both girls are starting to roll from back to front.
That's it for now. I just got a new camera and I have some new photos to post but it'll be a few days before I can motivate to load the software.
Take care,
Kris
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