Back to the subject of Clare's speech therapy and my dilemma over whether to continue or not. I cannot gush enough about Clare's speech therapist, and I hate to let that go (and am afraid that once we are off Judy's schedule, it will be hard to get back on - she is in high demand). Clare's progress has been amazing after about six months of working with Judy. And Judy keeps telling me that we should see some "real improvement" once Clare has her tongue released. Real improvement?? Shawn and I marvel over the improvement already! But then it comes down to the question of which is more of a disservice to Clare - discontinuing speech or having her endure one really long day each week. (And before anyone offers this suggestion, it was almost impossible to find a time that worked for both us and Judy, so switching her speech to a different day or time is not an option right now.)
As I have said over and over, Clare's vocabulary has exploded, she now uses verbs and makes complete sentences, and is expanding her food repertoire (becoming stronger from the bite and blow toys Clare "exercises" with daily and tips from Judy on ways to help Clare eat better, both in diet and technique). One of the things that Judy has been working very hard with Clare on is her colors. Clare understands what colors are and can name them, but she cannot identify which color is which. We have played color games, looked at books, done all kinds of things for a long time now, but Clare still would only get the color right by chance. Until Judy introduced Clare to the signs for colors. When Judy holds up a banana and asks Clare what color it is, Clare cannot tell her. When Judy makes the sign for "yellow" while asking Clare, Clare immediately says "yellow." I don't know what it is about the signs, but Clare has an easier time identifying the sign with the name of the color. Or maybe she needs two visuals to make the connection? (The sign and the color itself.) I don't know why it works, but it does. So we are learning the signs for the basic colors - yellow, red, blue, green, orange, pink, and purple. Judy has also been using this technique to cue Clare in using verb phrases as well (such as "can I have," "it is not"). Once Clare has mastered identifying colors with the sign cues, hopefully she will be able to do it without the cues as well. It is an interesting technique, and one that seems to be working very well with Clare. I know not to expect Clare to be able to do everything on the same time table as Jamie, but she will be four in a couple weeks and cannot identify any letters, numbers, shapes, etc. This is one of the areas where I feel her work with Judy is helping so much. Clare loves to play with Judy and eagerly looks forward to their visits, so I am really torn as to what is the right thing to do for Clare's sake.
Wednesday, March 18, 2009
Monday, March 16, 2009
Exhausted
I know all parents are tired, but I am wiped these days! Violet is finally sleeping a little better at night and is not so gassy, but my body is still getting adjusted to waking up every 1.5-2 hours with her. Then we usually have both Clare and Simon up by 6am every morning, and it's go go go until bedtime.
The kids are all still up and down with illnesses. Just when we thought everyone was getting better, Clare came down with conjunctivitis and quickly passed it on to Simon. After another round of antibiotics, Clare's eyes cleared up, but Simon is still fighting his.
Jamie is under attack from his allergies again, and we haven't even really hit spring yet. We have an appointment with the allergist at the end of this month to discuss changing his treatment. I am praying we are not at the point already where he needs allergy shots, but I am not sure where else the doctor can go at this point. Jamie is already on three allergy medications (two different oral antihistamines and a nose spray), yet he continues to be congested with red eyes, sports the huge allergy shiners, and has a lingering cough. He spent the last two days in RI with my family, which equates to loads of fun and late nights. We get to endure the effects of his withdrawal today! Needless to say, he is one tired kid. And now Simon has spiked a high fever and developed a rash on one of his cheeks. After dosing him with Tylenol and Benadryl, per the pediatrician's orders, we put him to bed at 5:30pm. The pedi's office wanted to see him, but I am too wiped to even think about bringing someone to the doctor's, so we opted for the put-to-bed-immediately option and see how he is doing come morning.
Then there's Miss Clare. She seems to finally be feeling somewhat better cold-wise (still has a slight cough and runny nose, though), but Mondays are a tough day between school and speech therapy. She was so distracted at speech this afternoon. She kept flitting around like a little butterfly - just could not settle down and focus on a task. Judy is AMAZINGLY patient (I need some of that!) and kept reminding Clare about "quiet hands" and finishing the game before starting something else. Judy uses a schedule board with Clare to keep her focused on what they are doing at the present moment. This allows Clare to know what's coming up next (such as today went game, snack, coloring) so she's not preoccupied wondering about that. Usually the schedule board works great, but Clare was so unfocused today that that didn't even do it. She did not have any meltdowns at speech, but once we got home, she was so tired. All she could do was cry and scream at us. She literally could not function. Clare's oral motor skills go down the drain when she's tired, so she was slurring her words. We cannot understand her then, and she becomes even more frustrated. It breaks my heart (and it takes every ounce of patience and tolerance I have to not start screaming back). We see such great progress with Clare with her speech therapy, but if she is exhausted to the point of not being able to function every Monday afternoon, then I am not sure how long it can continue. Clare is having her surgery in a couple weeks, so we want to see what happens after that. For now, we are just going to keep at it and hope for the best.
And the queen of the castle is finally getting her crown. Unfortunately, it's on the bottom left side of my mouth. On the positive side, Shawn found me these delicious fruit "popsicles" by Edy's. I am a sugar junkie and have cut out heavy sweets from my diet (like chocolate, cookies, cake, brownies, ice cream, all the stuff I crave) - partly as a Lenten sacrifice and partly to lose my baby weight. I admit I definitely eat when I am stressed. These fruit bars are delicious, made out of real fruit, and only have 30 calories per bar. Eat up, baby!
The kids are all still up and down with illnesses. Just when we thought everyone was getting better, Clare came down with conjunctivitis and quickly passed it on to Simon. After another round of antibiotics, Clare's eyes cleared up, but Simon is still fighting his.
Jamie is under attack from his allergies again, and we haven't even really hit spring yet. We have an appointment with the allergist at the end of this month to discuss changing his treatment. I am praying we are not at the point already where he needs allergy shots, but I am not sure where else the doctor can go at this point. Jamie is already on three allergy medications (two different oral antihistamines and a nose spray), yet he continues to be congested with red eyes, sports the huge allergy shiners, and has a lingering cough. He spent the last two days in RI with my family, which equates to loads of fun and late nights. We get to endure the effects of his withdrawal today! Needless to say, he is one tired kid. And now Simon has spiked a high fever and developed a rash on one of his cheeks. After dosing him with Tylenol and Benadryl, per the pediatrician's orders, we put him to bed at 5:30pm. The pedi's office wanted to see him, but I am too wiped to even think about bringing someone to the doctor's, so we opted for the put-to-bed-immediately option and see how he is doing come morning.
Then there's Miss Clare. She seems to finally be feeling somewhat better cold-wise (still has a slight cough and runny nose, though), but Mondays are a tough day between school and speech therapy. She was so distracted at speech this afternoon. She kept flitting around like a little butterfly - just could not settle down and focus on a task. Judy is AMAZINGLY patient (I need some of that!) and kept reminding Clare about "quiet hands" and finishing the game before starting something else. Judy uses a schedule board with Clare to keep her focused on what they are doing at the present moment. This allows Clare to know what's coming up next (such as today went game, snack, coloring) so she's not preoccupied wondering about that. Usually the schedule board works great, but Clare was so unfocused today that that didn't even do it. She did not have any meltdowns at speech, but once we got home, she was so tired. All she could do was cry and scream at us. She literally could not function. Clare's oral motor skills go down the drain when she's tired, so she was slurring her words. We cannot understand her then, and she becomes even more frustrated. It breaks my heart (and it takes every ounce of patience and tolerance I have to not start screaming back). We see such great progress with Clare with her speech therapy, but if she is exhausted to the point of not being able to function every Monday afternoon, then I am not sure how long it can continue. Clare is having her surgery in a couple weeks, so we want to see what happens after that. For now, we are just going to keep at it and hope for the best.
And the queen of the castle is finally getting her crown. Unfortunately, it's on the bottom left side of my mouth. On the positive side, Shawn found me these delicious fruit "popsicles" by Edy's. I am a sugar junkie and have cut out heavy sweets from my diet (like chocolate, cookies, cake, brownies, ice cream, all the stuff I crave) - partly as a Lenten sacrifice and partly to lose my baby weight. I admit I definitely eat when I am stressed. These fruit bars are delicious, made out of real fruit, and only have 30 calories per bar. Eat up, baby!
Friday, March 13, 2009
Miss Popularity
As I was walking Clare into school yesterday morning, another mom stopped me and asked, "Is this Clare?" I knew her little boy was in Clare's class, and I said, "Yes, and you have A, right?" She said that her son talks nonstop about Clare at home, so she wanted to know which child was Clare. I thought that was sweet.
Then when I picked Clare up from school, her teacher said that one of the other children's moms came into the classroom and asked Miss Pam to point out Clare to her, explaining that her son J talks all the time about Clare. I laughed and told Pam what A's mom had said to me that morning. Pam informed me that the afternoon 4-year old class (the majority of which is comprised of the students that Clare was in preschool with when she first started in April of last year - Clare still being 3 when school started this past fall did not move up with them) still talked about Clare and, whenever they saw her name tag hanging up, asked about her.
And then when I picked Clare up from school today, Pam told me that Clare and J were sitting next to each other today, and Clare said, "J, I love you." And J responded, "I love you." And then they kissed! (I am not ready for THAT yet!)
It definitely gives me those warm fuzzies to hear how the children love Clare. And obviously talk about her so much at home that their parents want to know who Clare is as well. I know that is one of the "gifts" of Williams syndrome - that endearing personality and the ability to charm anyone and everyone! Clare certainly has that gift!
Then when I picked Clare up from school, her teacher said that one of the other children's moms came into the classroom and asked Miss Pam to point out Clare to her, explaining that her son J talks all the time about Clare. I laughed and told Pam what A's mom had said to me that morning. Pam informed me that the afternoon 4-year old class (the majority of which is comprised of the students that Clare was in preschool with when she first started in April of last year - Clare still being 3 when school started this past fall did not move up with them) still talked about Clare and, whenever they saw her name tag hanging up, asked about her.
And then when I picked Clare up from school today, Pam told me that Clare and J were sitting next to each other today, and Clare said, "J, I love you." And J responded, "I love you." And then they kissed! (I am not ready for THAT yet!)
It definitely gives me those warm fuzzies to hear how the children love Clare. And obviously talk about her so much at home that their parents want to know who Clare is as well. I know that is one of the "gifts" of Williams syndrome - that endearing personality and the ability to charm anyone and everyone! Clare certainly has that gift!
Friday, March 06, 2009
Madhouse Days
It's one of those days when I feel as if we live in a madhouse. The kids are all being very well-behaved (for once!), but hours of running around here and there is making me loony!
Violet had her appointment with the ENT today. Shawn met me at the doctor's since I had Jamie and Simon with me as well (Clare being at school). The doctor examined Violet again, and after forcefully pushing her tongue up and around with thick-gloved hands, Violet graced him with the biggest grin we have seen yet! Dr. Z went over our options again and the pros and cons associated with each option - either release the tongue right then in the office with a topical anesthetic, have it done under general anesthesia in the hospital, or continue to do nothing and see if Violet has problems in the future. Given the speech and feeding problems we currently face with Clare (although we do acknowledge that Clare's low muscle tone contributes to those issues as well) and that we would rather avoid general anesthesia if we can, we chose option one and had Violet's tongue clipped immediately.
I was shocked how easy the procedure was and how well Violet did! Dr. Z warned us that the topical anesthetic tasted horrible (he applied it under her tongue using a cotton swab) - Violet never made a face or sound and even appeared to be trying to taste it. Then Dr. Z warned us that Violet would probably cry once he clipped the skin and would bleed for a few seconds. Violet did neither of those things. No crying, not even flinching and no blood at all! Dr. Z was even able to clip the skin a good ways back under her tongue, so Violet should not have any trouble in the future. The entire appointment lasted about 17 minutes. I am so glad we were able to get this procedure done with little fuss.
Violet is already starting to lose her "lizard tongue," although Dr. Z said it may never truly go away because that's how Violet's tongue was formed. But it has rounded out a bit so far!
Violet had her appointment with the ENT today. Shawn met me at the doctor's since I had Jamie and Simon with me as well (Clare being at school). The doctor examined Violet again, and after forcefully pushing her tongue up and around with thick-gloved hands, Violet graced him with the biggest grin we have seen yet! Dr. Z went over our options again and the pros and cons associated with each option - either release the tongue right then in the office with a topical anesthetic, have it done under general anesthesia in the hospital, or continue to do nothing and see if Violet has problems in the future. Given the speech and feeding problems we currently face with Clare (although we do acknowledge that Clare's low muscle tone contributes to those issues as well) and that we would rather avoid general anesthesia if we can, we chose option one and had Violet's tongue clipped immediately.
I was shocked how easy the procedure was and how well Violet did! Dr. Z warned us that the topical anesthetic tasted horrible (he applied it under her tongue using a cotton swab) - Violet never made a face or sound and even appeared to be trying to taste it. Then Dr. Z warned us that Violet would probably cry once he clipped the skin and would bleed for a few seconds. Violet did neither of those things. No crying, not even flinching and no blood at all! Dr. Z was even able to clip the skin a good ways back under her tongue, so Violet should not have any trouble in the future. The entire appointment lasted about 17 minutes. I am so glad we were able to get this procedure done with little fuss.
Violet is already starting to lose her "lizard tongue," although Dr. Z said it may never truly go away because that's how Violet's tongue was formed. But it has rounded out a bit so far!
Monday, March 02, 2009
Cousins
Violet and I spent a long weekend in Philadelphia with my sister Christina, Tee Jay, and my new niece Casey. We had a wonderful visit (and thank you, thank you, thank you to Shawn who bravely held the fort down at home with the other three children!). I was able to do some cooking, baking, and grocery shopping for them and stock them up for a good week or so with food. Casey is their first child, and we all know how hard new parenthood can be! 
Casey is gorgeous! Being only a week old, she made one-month old Violet look huge. Of course, we had to dress the girls in matching outfits and snap some photos.
Casey is gorgeous! Being only a week old, she made one-month old Violet look huge. Of course, we had to dress the girls in matching outfits and snap some photos.
Wednesday, February 25, 2009
Penance
Today is Ash Wednesday, the beginning of the Lenten season. Lent is the 40 days prior to Easter when we, as Catholics, enter a period of penance, prayer, and sacrifice to prepare ourselves to celebrate Easter. My penance today is sick children - complete with one who hacked so bad from his allergies that he vomited all down his bunk bed and into his sister's (one of the cons of bunk beds) and the other one who has been screaming bloody murder all day from an ear infection that won't go away (after two rounds of antibiotics). All I can say is, after stripping and scouring two beds, inspecting a zillion stuffed animals, steam cleaning one bedroom carpet, and doing five loads of laundry, the one bright part of my day is that Violet has been an angel baby today. She has decided today is a good day for sleeping (which I am sure is going to mean a fun night) - even during the animal inspection! (Can you I Spy the sleeping baby?)
Monday, February 23, 2009
Tree's Law
Kind of like Murphy's Law, but in my life!
It never fails - this is the first time Shawn has ventured on an overnight business trip since Violet's birth. The night before he travels to northern Maine, his car is broken into and his GPS stolen (an essential tool for the medical salesman to find those out-of-the-way rural hospitals!). This means an unexpected trip to Best Buy to shell out a couple hundred dollars because Shawn depends on his GPS to do his job. (And me freaking out because there are footsteps in the snow all around our driveway - just the thought of a thief sneaking around our house in the middle of the night now that I am home by myself with the kids. This is why we have a house alarm!)
I actually get my act together and am able to get all four kids fed, dressed, and in the car (it was 11am when we left the house, but I still consider that successful because I did it all by myself). I have packed snacks, drinks, and activities to sustain us through Clare's speech therapy. I herd the four of them inside the building, fighting the driving wind. We wait 15 minutes (which is FOREVER when you're trying to keep little children entertained and not touching everything in sight) before someone finally figures out that Clare's speech therapist took the week off work. Thanks for the phone call!
And then Jamie succumbs to the flu. The actual fever-aches-chills-vomiting flu. On the positive side, he required only 20 minutes of attention before falling asleep in his bed at 5:30pm for the night. It was much harder getting Clare, Simon, and Violet to comply with bedtime, but now they are all asleep by 8pm. (Although I hear little snorts coming from the bouncy seat, so I think my nighttime companion is waking again. Violet missed the memo about being Baby #4. The poor baby is plagued by gas at night, and we are still working on finding out what works best for her. Her worst times are usually 7-9pm and 12-3am. Fun, fun, fun!)
Addendum: As I am now up at 3am with Violet, our house was rocked. There was a loud boom and the entire house literally shook on its foundation. (Thankfully it did not wake up the sleeping children.) Being home alone with four little children, I immediately dialed 911 versus going downstairs to investigate myself. While on the phone with the fire department (trying to figure out if a bulldozer had rammed into our front door), the dispatcher broke into our call stating there were multiple reports of "house rocking" in our neighborhood. Turns out there was an explosion in one of the houses on the street behind us, and the house immediately went up into flames. I can watch from my bedroom window - the sky is white and orange between smoke and flames. I am going to try to go back to sleep, but I will say a prayer for the family who was in that house. I am not sure if anyone could have survived the explosion.
It never fails - this is the first time Shawn has ventured on an overnight business trip since Violet's birth. The night before he travels to northern Maine, his car is broken into and his GPS stolen (an essential tool for the medical salesman to find those out-of-the-way rural hospitals!). This means an unexpected trip to Best Buy to shell out a couple hundred dollars because Shawn depends on his GPS to do his job. (And me freaking out because there are footsteps in the snow all around our driveway - just the thought of a thief sneaking around our house in the middle of the night now that I am home by myself with the kids. This is why we have a house alarm!)
I actually get my act together and am able to get all four kids fed, dressed, and in the car (it was 11am when we left the house, but I still consider that successful because I did it all by myself). I have packed snacks, drinks, and activities to sustain us through Clare's speech therapy. I herd the four of them inside the building, fighting the driving wind. We wait 15 minutes (which is FOREVER when you're trying to keep little children entertained and not touching everything in sight) before someone finally figures out that Clare's speech therapist took the week off work. Thanks for the phone call!
And then Jamie succumbs to the flu. The actual fever-aches-chills-vomiting flu. On the positive side, he required only 20 minutes of attention before falling asleep in his bed at 5:30pm for the night. It was much harder getting Clare, Simon, and Violet to comply with bedtime, but now they are all asleep by 8pm. (Although I hear little snorts coming from the bouncy seat, so I think my nighttime companion is waking again. Violet missed the memo about being Baby #4. The poor baby is plagued by gas at night, and we are still working on finding out what works best for her. Her worst times are usually 7-9pm and 12-3am. Fun, fun, fun!)
Addendum: As I am now up at 3am with Violet, our house was rocked. There was a loud boom and the entire house literally shook on its foundation. (Thankfully it did not wake up the sleeping children.) Being home alone with four little children, I immediately dialed 911 versus going downstairs to investigate myself. While on the phone with the fire department (trying to figure out if a bulldozer had rammed into our front door), the dispatcher broke into our call stating there were multiple reports of "house rocking" in our neighborhood. Turns out there was an explosion in one of the houses on the street behind us, and the house immediately went up into flames. I can watch from my bedroom window - the sky is white and orange between smoke and flames. I am going to try to go back to sleep, but I will say a prayer for the family who was in that house. I am not sure if anyone could have survived the explosion.
Baby in White
We had a beautiful Sunday, surrounded by family and friends, for the Baptism of Violet Grace. Violet was precious all in white!
Saturday, February 21, 2009
Rats... Foiled Again
Clare had her pre-op physical yesterday to get the thumbs-up from her pediatrician for her surgery in 10 days. Unfortunately, those thumbs stayed down.
Clare has had a lingering cough from her cold and sinus infection. She also has been very tired these days (her teacher has told me every day this week that Clare seemed tired at school that day). The thought always crosses our minds when Clare seems more tired than usual that there is something going on with her heart. She has her next echo scheduled for mid-April and that cannot come soon enough! But, this time, her lethargy is explained by the lingering cough and congestion and the brewing of an ear infection. She is back on antibiotics (she just finished the course of antibiotics for the sinus infection) and will not stop taking them until the day of her scheduled surgery. So her pediatrician does not want her to undergo the surgery, even though it is a minor one, given her cardiac and pulmonary history.
Clare's ENT only performs these surgeries on the first Monday of the month, so now her frenulectomy is pushed off until April 6. We are disappointed not to have it in a few days (especially since we have been looking forward to seeing how she improves speech- and feeding-wise post-surgery as well as we had all the arrangements in place for Jamie and Simon's care while we were gone). Now probably only Shawn will take Clare, and I will stay home with the boys and baby. I hate being the one left behind, but only one parent is allowed in recovery and Violet is not allowed, so Shawn has to be there with Clare. I would have liked to at least be there to wait and see her before and after the operation, but it can't be helped.
Clare has had a lingering cough from her cold and sinus infection. She also has been very tired these days (her teacher has told me every day this week that Clare seemed tired at school that day). The thought always crosses our minds when Clare seems more tired than usual that there is something going on with her heart. She has her next echo scheduled for mid-April and that cannot come soon enough! But, this time, her lethargy is explained by the lingering cough and congestion and the brewing of an ear infection. She is back on antibiotics (she just finished the course of antibiotics for the sinus infection) and will not stop taking them until the day of her scheduled surgery. So her pediatrician does not want her to undergo the surgery, even though it is a minor one, given her cardiac and pulmonary history.
Clare's ENT only performs these surgeries on the first Monday of the month, so now her frenulectomy is pushed off until April 6. We are disappointed not to have it in a few days (especially since we have been looking forward to seeing how she improves speech- and feeding-wise post-surgery as well as we had all the arrangements in place for Jamie and Simon's care while we were gone). Now probably only Shawn will take Clare, and I will stay home with the boys and baby. I hate being the one left behind, but only one parent is allowed in recovery and Violet is not allowed, so Shawn has to be there with Clare. I would have liked to at least be there to wait and see her before and after the operation, but it can't be helped.
Cousin Casey is Here!
We don't have many details, but Casey Susanne arrived last night! I was talking to my sister Christina on her cell phone on the way to the hospital at 8pm, after her water broke. Next thing we hear, she was having an emergency C-section at 10:30. My mom called after midnight to let us know that both Christina and Casey were okay, but that is the extent of the details this morning. We cannot wait to hear more about Casey's arrival, and our own little brood is so excited to have a baby cousin! (They have never had a baby cousin - they have two terrific older cousins.)
It has been a rough couple of days for Christina and Tee Jay. Thursday night, Tee Jay's 13-year old cousin was killed in a car accident. His aunt and another cousin, also in the car, are in the hospital with serious injuries. After absorbing the shock and grief of this news on Friday, Christina and Tee Jay were dealing with the conflicting emotions of not being able to travel back to RI to be with the family because Christina was almost due (Tee Jay comes from a very close family), while trying to still be excited about their own life-changing event (Christina was scheduled for an induction on February 23). Then Christina's water broke late Friday afternoon. So please keep Christina and Tee Jay, and Tee Jay's family, in your prayers through all these tragic and wonderful events that have happened in their lives over the last few days.
It has been a rough couple of days for Christina and Tee Jay. Thursday night, Tee Jay's 13-year old cousin was killed in a car accident. His aunt and another cousin, also in the car, are in the hospital with serious injuries. After absorbing the shock and grief of this news on Friday, Christina and Tee Jay were dealing with the conflicting emotions of not being able to travel back to RI to be with the family because Christina was almost due (Tee Jay comes from a very close family), while trying to still be excited about their own life-changing event (Christina was scheduled for an induction on February 23). Then Christina's water broke late Friday afternoon. So please keep Christina and Tee Jay, and Tee Jay's family, in your prayers through all these tragic and wonderful events that have happened in their lives over the last few days.
(Later) I just chatted with Christina and all are doing well. Casey was behaving in utero pretty much how Violet was, thus the C-section. My new niece is beautiful!!! (If a little grumpy-looking!)
Wednesday, February 18, 2009
Sisters
Before we knew whether we were having a boy or girl, part of me really wanted the baby to be a boy. I was afraid what it would be like having another little girl - and a "typical" girl. Would we constantly be comparing Clare and her? Would Clare be left out when her sister had girlfriends, went to the prom, got married, had babies? Would a sister resent having an older sister like Clare? I was afraid of the answers to all those questions (and still am) and just wanted to have another boy to ensure that all those questions remained hypothetical. Then Clare could just continue to be the princess in our house, surrounded by brothers. .JPG)
Sometimes God has other plans for us, and He sent us Violet instead of another boy. I truly love having another little girl, and I am happy that Clare has a sister. (I have two sisters and know how wonderful that bond can be.) And Clare is delighted with her little sister. She wants to hug, kiss, and love her daily. I still am apprehensive of what the dynamics of their relationship will be as they grow, but I hope both Clare and Violet always treasure the gift of having a sister.
Monday, February 16, 2009
Couch Potato
It's amazing how 21 months can completely erase your memory. I forgot how much time I would spend on my butt on the couch nursing a newborn. When there are a zillion other things I need or want to be doing. (Like the mounds of laundry, dust bunnies everywhere, and my sorely-neglected scrapbooking! Don't roll your eyes, K or R - it really is neglected right now.)
But then as I become the self-titled couch potato, Violet and I are usually joined by another child (if not all). Our days have become filled with simple things like playing Candyland Castle a dozen times in a row (Clare's current obsession), reading any board books we have that feature numbers (Simon's), and poring over puzzle books (Jamie's). I play Planet Heroes and save the universe from the evil antics of Professor Darkness (my hero does not move around that much - did I mention I was still sitting on the couch?). I direct Handy Manny (aka Clare) to whatever needs fixing in the house. I endlessly recite numbers with Simon (sometimes it's like talking with Rainman).
Having a new baby always forces me to just sit back and enjoy my children. The laundry can wait.
But then as I become the self-titled couch potato, Violet and I are usually joined by another child (if not all). Our days have become filled with simple things like playing Candyland Castle a dozen times in a row (Clare's current obsession), reading any board books we have that feature numbers (Simon's), and poring over puzzle books (Jamie's). I play Planet Heroes and save the universe from the evil antics of Professor Darkness (my hero does not move around that much - did I mention I was still sitting on the couch?). I direct Handy Manny (aka Clare) to whatever needs fixing in the house. I endlessly recite numbers with Simon (sometimes it's like talking with Rainman).
Having a new baby always forces me to just sit back and enjoy my children. The laundry can wait.
Saturday, February 14, 2009
Friday, February 13, 2009
Visiting Friends
Violet and I headed down to Boston last night to hang out with Kerry and Brady at Children's Hospital. I couldn't believe how good Brady looked just a few days post-open heart surgery. He was very out-of-it, but looked like a sleeping angel. He was just wearing a diaper, so I had a good look at his incision (and Kerry - who looked great, too, although I know from experience how exhausted she was - did not mind my gawking - I let her gawk over my baby instead). I wonder if Kerry feels how I felt when I first saw Clare's incision. That disbelief that someone cut into your baby and that visible scar is now there forever. As parents, our scars are not physical, but I think they show just as visibly sometimes.
Kerry was taking everything in stride, like she typically does. One of the things I appreciate most about Kerry as a friend is her down-to-earth attitude. She truly understands how to be a good friend. We can share what we're going through and bounce things off each other without feeling like we're adding drama to the other one's life (I've had friends like that and it is not helpful when you have enough of your own drama in your life!).
Although it was weird going back to Children's (we have not been there since Clare's last cath in September 2007) and my visitor ID badge still said Parent/Guardian, it was good to visit with Kerry and see how well Brady is recovering.
On the way out, I visited briefly with Brian, Tarynn's dad. (On top of the stress of having your newborn undergo open heart surgery, Tarynn's mom, Heidi, is recovering from childbirth and a bout with mastitis, so she was sleeping.) Tarynn is still in the cardiac ICU, but making strides toward getting out on the cardiac floor in the future. I am in awe of Brian and Heidi's strength and courage right now. Tarynn is their second child to undergo open heart surgery as an infant, and in the late spring, their 3-year old is most likely having a second open heart surgery. These last three weeks following Violet's birth have been rough for our family - dealing with the recovery of a C-section, adjustment of bringing the fourth child into our family, extremely sleep-deprived parents, and Jamie, Clare, and Simon are now all battling a bad cold and cough and are usually on the grumpier side (Clare's cold has turned into sinusitis, so she is now on antibiotics, but has not turned the corner yet - which is why Shawn and I are even more sleep-deprived because Jamie is the only child sleeping 12 hours through the night right now!). But everything always gets put into perspective when I see what other parents are going through. I feel as if Brian and Heidi are living my personal nightmare - doing the "heart thing" all over again with another child. I know from experience that you do what you have to do and you get through it, but I don't want to ever have to do it again. I can only imagine how Brian and Heidi feel facing this road for the second time. I hope that we truly are seeing the light at the end of the tunnel with Clare, since she has been doing so well for over a year now. She has her next echo in late March/early April, so we continue to look for good news.
In the meantime, we continue to keep Brady and Tarynn and their families in our prayers and that they all get to come home soon!
Kerry was taking everything in stride, like she typically does. One of the things I appreciate most about Kerry as a friend is her down-to-earth attitude. She truly understands how to be a good friend. We can share what we're going through and bounce things off each other without feeling like we're adding drama to the other one's life (I've had friends like that and it is not helpful when you have enough of your own drama in your life!).
Although it was weird going back to Children's (we have not been there since Clare's last cath in September 2007) and my visitor ID badge still said Parent/Guardian, it was good to visit with Kerry and see how well Brady is recovering.
On the way out, I visited briefly with Brian, Tarynn's dad. (On top of the stress of having your newborn undergo open heart surgery, Tarynn's mom, Heidi, is recovering from childbirth and a bout with mastitis, so she was sleeping.) Tarynn is still in the cardiac ICU, but making strides toward getting out on the cardiac floor in the future. I am in awe of Brian and Heidi's strength and courage right now. Tarynn is their second child to undergo open heart surgery as an infant, and in the late spring, their 3-year old is most likely having a second open heart surgery. These last three weeks following Violet's birth have been rough for our family - dealing with the recovery of a C-section, adjustment of bringing the fourth child into our family, extremely sleep-deprived parents, and Jamie, Clare, and Simon are now all battling a bad cold and cough and are usually on the grumpier side (Clare's cold has turned into sinusitis, so she is now on antibiotics, but has not turned the corner yet - which is why Shawn and I are even more sleep-deprived because Jamie is the only child sleeping 12 hours through the night right now!). But everything always gets put into perspective when I see what other parents are going through. I feel as if Brian and Heidi are living my personal nightmare - doing the "heart thing" all over again with another child. I know from experience that you do what you have to do and you get through it, but I don't want to ever have to do it again. I can only imagine how Brian and Heidi feel facing this road for the second time. I hope that we truly are seeing the light at the end of the tunnel with Clare, since she has been doing so well for over a year now. She has her next echo in late March/early April, so we continue to look for good news.
In the meantime, we continue to keep Brady and Tarynn and their families in our prayers and that they all get to come home soon!
Wednesday, February 11, 2009
Friends in the Hospital
I am always constantly thinking and praying when other "heart" friends are in the hospital. This week, we knew of two families whose children underwent open heart surgery. Right now, both kiddos are doing well, but are still at Children's Hospital Boston. (And I am hoping to get down there tomorrow night to visit.) Our thoughts and prayers go out to 3-year old Brady (who has WS) and 1-week old Tarynn and their families for continued recovery and smooth transitions home in the near future.
Tuesday, February 10, 2009
Bounce You!
What do you do when you have a brand new baby, mom recovering from a C-section, overworked dad, and a 6-year old birthday boy who wants to have his entire kindergarten class at his birthday party? Bounce U, of course!
We usually do our big birthday bashes at our house, complete with fancy, homemade cakes and creative party games, but we were not up to the challenge this year! Jamie was thrilled to have his birthday party at a party facility filled with giant inflatables - slides, bounce houses, and obstacle courses. He invited his class (and all showed minus two!) and we had our family and some family friends as well. Jamie had a blast, as did all the kids and even the adults! (I won't post the pics of Shawn going down
the big slide!) Even Clare and Simon loved bouncing and were non-stop the entire time. It was a fabulous birthday party!
the big slide!) Even Clare and Simon loved bouncing and were non-stop the entire time. It was a fabulous birthday party!(I've been trying to upload a video taken at Bounce U, but Blogger has not been cooperative. I will keep on trying!)
Friday, February 06, 2009
Monarch Time
Jamie loves our local minor-league hockey team, the Manchester Monarchs. For his birthday, we bought him his first real jersey (as in it cost three figures!!!), since he has been begging for one for over a year now. The next evening, Shawn took Jamie to a game so he could wear his jersey for the first time. I just thought this photo of Jamie at the game was so adorable! (It's all for you, Auntie Erin!!!)
Two Weeks Already
Violet turned two weeks old this past Wednesday - where has the time gone? Oh, yeah, I've been in bed or laying on the couch... ha ha ha... No, seriously, I am starting to be more and more on my feet. I've even picked Jamie up from school, although Shawn had to put the other three kids in the car for me to get there. I have my check-up with the OB next week, so I am hoping to get the thumbs up to do heavy lifting again - gotta get back to the gym. (That is most definitely a joke!)
Violet had her 2-week visit with the pediatrician today. It was her first visit with our regular doctor. The doctor's goal is for the baby to be back to their birth weight by this visit (Violet was 6 lbs, 7 oz at birth), and she weighed in at 7 lbs, 5 oz today! The one issue he had was with her tongue-tie. He took one look at it and said we should have it clipped soon. Although Violet shows no clinical signs of having complications from her tongue-tie right now (because she obviously is not having any problem with her feeding!), the pediatrician predicts that she will have feeding and/or speech issues in the future due to the severity of the tongue-tie. (Like I mentioned before, Violet's tongue actually forks like a lizard's when she sticks it out because the tie is so prominent.) I have not called the ENT yet (it's been a crazy day), but we are planning on doing so next week. At this young age, Violet can still have the tongue released in the doctor's office with just a local anesthetic. Violet's newborn blood tests have not come back yet (which usually means that all is normal), but we are planning on having her thyroid labs repeated in a few weeks regardless due to Jamie's and Clare's history of congenital hypothyroidism. Hopefully Violet's results will turn out like Simon's and we will have another medication-free baby!
Friday, January 30, 2009
Happy 6th Birthday, Jamie!
Happy Birthday to our six-year old!
Just six short years ago (to the minute since it is 7:42pm right now as I type this - the time of your birth), your birth changed our lives forever. We could never have foreseen the joys, wonders, excitement, (challenges!), and love you have brought into our lives. You were the one who made us parents - what an amazing gift to us.
We love you, Jamie! Happy Birthday!
Just six short years ago (to the minute since it is 7:42pm right now as I type this - the time of your birth), your birth changed our lives forever. We could never have foreseen the joys, wonders, excitement, (challenges!), and love you have brought into our lives. You were the one who made us parents - what an amazing gift to us.
We love you, Jamie! Happy Birthday!
Wednesday, January 28, 2009
Sweet Stuff
More photos of our cutie pie. And, sadly, this is the only photo so far of my four children together (still weird to say that!). We HAVE to get a better photo!
Monday, January 26, 2009
I Feel Pretty
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"I feel pretty... oh so pretty..." that's Violet talking because I most certainly do not feel pretty! I could go on and on about how this recovery is a zillion times harder (because it is), and now I have so much more appreciation for what some of my friends have been through. But the main thing is that Violet is here safe and sound, and we are all enamored with the newest member of our family.
Saturday, January 24, 2009
Postpartum Indulgence
It's a new experience to indulge in Percocet and Toblerone chocolate at 2am. One of the perks of a C-section?
We're all doing fairly well right now. My pain meds have been decreased in strength. Although I am much more aware of my incision pain now, it is such a relief to have the IV out of my arm and the epidural catheter out of my back (they leave it in for two days postpartum). I don't like being all doped up, so I am trying to get away with as little pain medication as I can without killing myself. I have gotten so much great advice from all my friends who have gone through this experience - thank you! I need it because I think one of the hardest parts for me about undergoing a C-section was that I had three amazing birth experiences (and as my OB put it, I have a "proven pelvis") and I fully expected Violet's birth to go along the same path. So this came as a huge shock to everyone, OB included. Since Christina is due a few weeks after me, we have been discussing birth plans and labor and delivery options. And C-section never came up because my biggest concern was not being able to handle the pain and have a drug-free birth like I did with Simon. Although labor was not a piece of cake with Simon, the recovery was. Within an hour of giving birth, I was up taking a shower, walking around, doing whatever I wanted. Maybe just a little slower. There is absolutely no "get up and go" now. I have to rely on someone else to even pull up my underwear! But enough about me!
Violet is doing great. I still cannot get over how tiny she is. Everything about her is so delicate. I think Clare has baby dolls bigger than Violet! It's hard to determine who she looks like, too. We catch glimpses of all our other babies in her. I think she is showing signs of a feisty personality, which is the way Jamie was as a baby. Clare slept so much as a newborn because of her heart, and Simon was a very mellow baby for the most part. Jamie, however, stopped acting like a newborn at one week old - very alert and aware and did not sleep, sleep, sleep like most newborns. Yesterday was a rough day for Violet because she was hungry and wanted to nurse all day long, but my milk had not come in yet. We had a day like this with newborn Jamie, too. (And I can remember my dad spending most of the day rocking Jamie.) I nursed Violet as often as she wanted (even if she's not getting much, it stimulates the milk production and can speed up the process), but eventually started to get very sore. Violet spent most of the day crying or trying to fall asleep, but I think the baby was just so hungry. By Baby #4, I have learned that sometimes you need to let go of how you think everything should be. I would have been appalled to let the nurse do this with Jamie, but I was more than willing to let our nurse cup-feed Violet half an ounce of formula just to settle her tummy a little bit. She did this once late morning and once late afternoon. Both times, it was enough to allow Violet to feel satisfied, and she would settle down to sleep. (And give us a break!) By the late evening, my milk had started to come in. So now, Violet has had a good night, waking only to nurse then she goes right back to sleep for a couple hours. I am alternating between having her in bed with me and putting her in the bassinet. I know she is happy because she does not mind sleeping in the bassinet.
The ENT did stop by this evening to take a peek in Violet's mouth. She does have a moderate tongue-tie, and he could fix it right away using just a local anesthetic. We talked about Clare and our concerns if we did not have Violet's tongue released. Dr. Z was Clare's former ENT, and he was the one who referred us to Clare's new ENT once we found out she had to have her surgery at a different hospital. Since Violet has no issues latching on and is nursing well, Dr. Z said there was no rush to having the tongue released. He was happy to do it before we left the hospital, but also said we could wait a few months. This would still be early enough to not interfere with eating solids or speech. Then Violet would undergo the same procedure Clare is having done. Although this involves general anesthesia, the recovery is the same, and Dr. Z said it is actually a safer procedure because it is more controlled since the child is not awake at all. Violet would be awake if we did it now, and her only pain relief would be sucrose water or breastfeeding after the procedure. So Shawn and I agreed on a wait-and-see approach for now.
We are planning on being discharged this morning. I am a little nervous about going home because I know I will feel even more helpless in my own home. But I am eager to get home because we have three other little ones who are missing us very much (and can't wait to have their new baby sister at home). Simon has decided that he does like me still, and both times he came to visit in the hospital, spent most of the time snuggled against my side in the hospital bed (and he was actually very good and listened about sitting still and not pushing on Mommy's tummy). Unless she was eating pudding after pudding, Clare was often snuggled on my other side. Jamie is the baby hog and just wanted to hold Violet the whole time. Both of our moms are with the kids right now (Shawn's mom has been with them since Violet's birth), and my mom is staying through the weekend, so we will have some help.
Okay, time to track down my nurse for another Percocet.
We're all doing fairly well right now. My pain meds have been decreased in strength. Although I am much more aware of my incision pain now, it is such a relief to have the IV out of my arm and the epidural catheter out of my back (they leave it in for two days postpartum). I don't like being all doped up, so I am trying to get away with as little pain medication as I can without killing myself. I have gotten so much great advice from all my friends who have gone through this experience - thank you! I need it because I think one of the hardest parts for me about undergoing a C-section was that I had three amazing birth experiences (and as my OB put it, I have a "proven pelvis") and I fully expected Violet's birth to go along the same path. So this came as a huge shock to everyone, OB included. Since Christina is due a few weeks after me, we have been discussing birth plans and labor and delivery options. And C-section never came up because my biggest concern was not being able to handle the pain and have a drug-free birth like I did with Simon. Although labor was not a piece of cake with Simon, the recovery was. Within an hour of giving birth, I was up taking a shower, walking around, doing whatever I wanted. Maybe just a little slower. There is absolutely no "get up and go" now. I have to rely on someone else to even pull up my underwear! But enough about me!
Violet is doing great. I still cannot get over how tiny she is. Everything about her is so delicate. I think Clare has baby dolls bigger than Violet! It's hard to determine who she looks like, too. We catch glimpses of all our other babies in her. I think she is showing signs of a feisty personality, which is the way Jamie was as a baby. Clare slept so much as a newborn because of her heart, and Simon was a very mellow baby for the most part. Jamie, however, stopped acting like a newborn at one week old - very alert and aware and did not sleep, sleep, sleep like most newborns. Yesterday was a rough day for Violet because she was hungry and wanted to nurse all day long, but my milk had not come in yet. We had a day like this with newborn Jamie, too. (And I can remember my dad spending most of the day rocking Jamie.) I nursed Violet as often as she wanted (even if she's not getting much, it stimulates the milk production and can speed up the process), but eventually started to get very sore. Violet spent most of the day crying or trying to fall asleep, but I think the baby was just so hungry. By Baby #4, I have learned that sometimes you need to let go of how you think everything should be. I would have been appalled to let the nurse do this with Jamie, but I was more than willing to let our nurse cup-feed Violet half an ounce of formula just to settle her tummy a little bit. She did this once late morning and once late afternoon. Both times, it was enough to allow Violet to feel satisfied, and she would settle down to sleep. (And give us a break!) By the late evening, my milk had started to come in. So now, Violet has had a good night, waking only to nurse then she goes right back to sleep for a couple hours. I am alternating between having her in bed with me and putting her in the bassinet. I know she is happy because she does not mind sleeping in the bassinet.
The ENT did stop by this evening to take a peek in Violet's mouth. She does have a moderate tongue-tie, and he could fix it right away using just a local anesthetic. We talked about Clare and our concerns if we did not have Violet's tongue released. Dr. Z was Clare's former ENT, and he was the one who referred us to Clare's new ENT once we found out she had to have her surgery at a different hospital. Since Violet has no issues latching on and is nursing well, Dr. Z said there was no rush to having the tongue released. He was happy to do it before we left the hospital, but also said we could wait a few months. This would still be early enough to not interfere with eating solids or speech. Then Violet would undergo the same procedure Clare is having done. Although this involves general anesthesia, the recovery is the same, and Dr. Z said it is actually a safer procedure because it is more controlled since the child is not awake at all. Violet would be awake if we did it now, and her only pain relief would be sucrose water or breastfeeding after the procedure. So Shawn and I agreed on a wait-and-see approach for now.
We are planning on being discharged this morning. I am a little nervous about going home because I know I will feel even more helpless in my own home. But I am eager to get home because we have three other little ones who are missing us very much (and can't wait to have their new baby sister at home). Simon has decided that he does like me still, and both times he came to visit in the hospital, spent most of the time snuggled against my side in the hospital bed (and he was actually very good and listened about sitting still and not pushing on Mommy's tummy). Unless she was eating pudding after pudding, Clare was often snuggled on my other side. Jamie is the baby hog and just wanted to hold Violet the whole time. Both of our moms are with the kids right now (Shawn's mom has been with them since Violet's birth), and my mom is staying through the weekend, so we will have some help.
Okay, time to track down my nurse for another Percocet.
Thursday, January 22, 2009
Arrival
Okay, I am kicking Shawn off blogger now. It is 2:20 am, and I am surprisingly more energized now that I had about 45 minutes of sleep!
Violet's labor and delivery was nothing like I expected at all. I would never have predicted that it would end in a C-section. We arrived at the hospital at 7am, and I was at 2 cm and 50% effaced. Because I am a carrier of the Group B strep infection, the first order of business was putting in an IV and getting some antibiotics in my system. About two hours later, they started my Pitocin to get the contractions going stronger and longer. Then Dr. B broke my water. By this time, I was at 3 cm and that's when the real fun began.
From the beginning, Violet was not happy with labor. At first her heart rate would go down with each contraction (below 100), then it started taking longer and longer for the heart rate to go back up. Dr. B thought Violet might be laying on her umbilical cord and compressing it with each contraction, so we tried various positions to get Violet off the cord. When that did not work, Dr. B started an amnio infusion, which means that she inserted a catheter into my uterus and started to put fluid back into the uterus. This provided more cushion for Violet, and her heart rate began to improve. At the same time, a pressure catheter was inserted to accurately monitor the strength of each contraction. This worked for a bit, and I dilated another centimeter to 4 cm. Then, once again, Violet's heart rate was acting up again. This time, not only did she have decelerations with each contraction, but in between, she became tachycardiac, and her heart rate would go up into the 180's. So this time, Dr. B inserted an internal fetal monitor to keep an exact eye on Violet's heart rate. By now, I had tubes and wires everywhere. It was becoming quite clear that my "natural" birth was going to be anything but. I was not allowed to labor in the tub or on the birthing ball. I was confined to the bed (which is exactly what I didn't want!).
Dr. B explained up front that if they could not get Violet's heart rate under control, then I would have to deliver by C-section. Definitely NOT in my birth plan, so I was willing to try anything. I spent over an hour on my hands and knees on the bed with the addition of giving me oxygen via mask to see how that would improve Violet's heart rate. Now after 10 hours of doing various things, I was still only at 4cm, and Violet really was not happy in any position. I had told Dr. B that I would stay on my hands and knees for hours and deliver that way, if I had to. But by now Shawn and I realized that a C-section was looking like the best option. After all, Violet's health and safety came first, no matter how the delivery went.
At 5 pm, we agreed to the C-section, and everything proceeded rapidly from there. I admit to being extremely nervous about this great unknown. Dr. B explained the procedure and recovery thoroughly (I love my OB and trust her implicitly - she has delivered all four of my children now). We joked about how I was going to have all the birth experiences possible, and now if I ever did have a fifth child, I could even experience a VBAC (vaginal birth after Cesarean). Getting an epidural while in very little discomfort was also a new, unpleasant experience, but the anesthesiologist was wonderful. Very encouraging and supportive and kept me updated the whole time we were in the operating room. I know Shawn was very anxious as well, but he was strong and brave for my sake! (Thank you, honey, I love you!) The C-section was underway, and Violet Grace was born at 5:42 pm. Although it is still surreal to me that I actually underwent a C-section, when Violet was brought out of me, and I heard that first cry, that was as real as my other births. I cried and thanked God that she was finally here.
We are surprised at what a peanut she is - weighing in at barely 6 lbs, 7 oz. (she was technically 6 lbs, 6.5 oz) and measuring 18 inches long, she is smaller than Clare was at birth! (Who was 6 lbs, 8 oz and 20".) About an hour after birth, Violet's heart and respiratory rates were still high, and she was cold (her feet and hands were blue). That resolved over the next couple hours. Violet did have the cord wrapped around her body twice (and I think once around her neck), which explains her decelerations. Dr. B believes that there was no way Violet would have delivered vaginally because of this. So I am thankful we made the decision to have a C-section before I endured hours more of labor (especially on my hands and knees). This way, I do have a C-section recovery ahead of me, but I am not recovering from hard labor and pushing as well. Dr. B hypothesizes that the stress of labor at least contributed to the tachycardia, but is having my placenta tested as well to rule out any infection. We, of course, have asked over and over, and Violet has no heart murmur (not that I was expecting one, but you never know!).
Right now, I am extremely tender and starting to feel the soreness of the incision. The epidural will remain in my spine for a couple days, and I am receiving pain relief through that. I have developed the "itchies" (which, to me, feels worse than the incision right now) and have received a shot for that. I don't know what to expect from the recovery, but so far, it is all new. Not too bad yet, but everyone keeps telling me, "Just wait." Great!
Violet is in the nursery having her hearing test done, and I miss her already. A mommy's pride, but she is the most beautiful baby. She has dark hair, but not as much as the other three did. She looks like a mix of Jamie, Clare, and Simon - it's so amazing! And I couldn't believe it when Shawn told me she is tongue-tied as well. The pediatrician will look at her later today, but from what I can see, it actually looks like a worse tongue-tie than Clare's, and her tongue may actually fork like a lizard's when she sticks it out because the tie is all the way to the front of her mouth. Thankfully, this should be a simple procedure if she needs it released, since Violet does not have Clare's medical history. But, for right now, Violet is already nursing like a pro and prefers being in bed with me.
I am still in awe that our baby girl is actually here and in our arms. One of the benefits of the C-section was that my sister-in-law was able to bring the kids to the hospital an hour after Violet's birth so they could meet her. Already, Jamie cannot get enough of her and wanted to just sit and hold her. Clare was eager to meet Violet, too. She has not gotten to hold her yet because she was also so excited to see me. Simon, however, wanted nothing to do with me and clung to Auntie Becky. I have a feeling we're going to have a little bit of a rough adjustment down that road. Especially since I have an incision now and won't be able to do all Simon will want me to do.
We will definitely be in the hospital into the weekend now. Shawn is going to download the photos off the camera later (since it is 2 am, and he is actually sleeping), so I will post more photos! Thank you all for your prayers and well wishes. We are ecstatic that Violet Grace has finally arrived, safe and sound.
Violet's labor and delivery was nothing like I expected at all. I would never have predicted that it would end in a C-section. We arrived at the hospital at 7am, and I was at 2 cm and 50% effaced. Because I am a carrier of the Group B strep infection, the first order of business was putting in an IV and getting some antibiotics in my system. About two hours later, they started my Pitocin to get the contractions going stronger and longer. Then Dr. B broke my water. By this time, I was at 3 cm and that's when the real fun began.
From the beginning, Violet was not happy with labor. At first her heart rate would go down with each contraction (below 100), then it started taking longer and longer for the heart rate to go back up. Dr. B thought Violet might be laying on her umbilical cord and compressing it with each contraction, so we tried various positions to get Violet off the cord. When that did not work, Dr. B started an amnio infusion, which means that she inserted a catheter into my uterus and started to put fluid back into the uterus. This provided more cushion for Violet, and her heart rate began to improve. At the same time, a pressure catheter was inserted to accurately monitor the strength of each contraction. This worked for a bit, and I dilated another centimeter to 4 cm. Then, once again, Violet's heart rate was acting up again. This time, not only did she have decelerations with each contraction, but in between, she became tachycardiac, and her heart rate would go up into the 180's. So this time, Dr. B inserted an internal fetal monitor to keep an exact eye on Violet's heart rate. By now, I had tubes and wires everywhere. It was becoming quite clear that my "natural" birth was going to be anything but. I was not allowed to labor in the tub or on the birthing ball. I was confined to the bed (which is exactly what I didn't want!).
Dr. B explained up front that if they could not get Violet's heart rate under control, then I would have to deliver by C-section. Definitely NOT in my birth plan, so I was willing to try anything. I spent over an hour on my hands and knees on the bed with the addition of giving me oxygen via mask to see how that would improve Violet's heart rate. Now after 10 hours of doing various things, I was still only at 4cm, and Violet really was not happy in any position. I had told Dr. B that I would stay on my hands and knees for hours and deliver that way, if I had to. But by now Shawn and I realized that a C-section was looking like the best option. After all, Violet's health and safety came first, no matter how the delivery went.
At 5 pm, we agreed to the C-section, and everything proceeded rapidly from there. I admit to being extremely nervous about this great unknown. Dr. B explained the procedure and recovery thoroughly (I love my OB and trust her implicitly - she has delivered all four of my children now). We joked about how I was going to have all the birth experiences possible, and now if I ever did have a fifth child, I could even experience a VBAC (vaginal birth after Cesarean). Getting an epidural while in very little discomfort was also a new, unpleasant experience, but the anesthesiologist was wonderful. Very encouraging and supportive and kept me updated the whole time we were in the operating room. I know Shawn was very anxious as well, but he was strong and brave for my sake! (Thank you, honey, I love you!) The C-section was underway, and Violet Grace was born at 5:42 pm. Although it is still surreal to me that I actually underwent a C-section, when Violet was brought out of me, and I heard that first cry, that was as real as my other births. I cried and thanked God that she was finally here.
We are surprised at what a peanut she is - weighing in at barely 6 lbs, 7 oz. (she was technically 6 lbs, 6.5 oz) and measuring 18 inches long, she is smaller than Clare was at birth! (Who was 6 lbs, 8 oz and 20".) About an hour after birth, Violet's heart and respiratory rates were still high, and she was cold (her feet and hands were blue). That resolved over the next couple hours. Violet did have the cord wrapped around her body twice (and I think once around her neck), which explains her decelerations. Dr. B believes that there was no way Violet would have delivered vaginally because of this. So I am thankful we made the decision to have a C-section before I endured hours more of labor (especially on my hands and knees). This way, I do have a C-section recovery ahead of me, but I am not recovering from hard labor and pushing as well. Dr. B hypothesizes that the stress of labor at least contributed to the tachycardia, but is having my placenta tested as well to rule out any infection. We, of course, have asked over and over, and Violet has no heart murmur (not that I was expecting one, but you never know!).
Right now, I am extremely tender and starting to feel the soreness of the incision. The epidural will remain in my spine for a couple days, and I am receiving pain relief through that. I have developed the "itchies" (which, to me, feels worse than the incision right now) and have received a shot for that. I don't know what to expect from the recovery, but so far, it is all new. Not too bad yet, but everyone keeps telling me, "Just wait." Great!
Violet is in the nursery having her hearing test done, and I miss her already. A mommy's pride, but she is the most beautiful baby. She has dark hair, but not as much as the other three did. She looks like a mix of Jamie, Clare, and Simon - it's so amazing! And I couldn't believe it when Shawn told me she is tongue-tied as well. The pediatrician will look at her later today, but from what I can see, it actually looks like a worse tongue-tie than Clare's, and her tongue may actually fork like a lizard's when she sticks it out because the tie is all the way to the front of her mouth. Thankfully, this should be a simple procedure if she needs it released, since Violet does not have Clare's medical history. But, for right now, Violet is already nursing like a pro and prefers being in bed with me.
I am still in awe that our baby girl is actually here and in our arms. One of the benefits of the C-section was that my sister-in-law was able to bring the kids to the hospital an hour after Violet's birth so they could meet her. Already, Jamie cannot get enough of her and wanted to just sit and hold her. Clare was eager to meet Violet, too. She has not gotten to hold her yet because she was also so excited to see me. Simon, however, wanted nothing to do with me and clung to Auntie Becky. I have a feeling we're going to have a little bit of a rough adjustment down that road. Especially since I have an incision now and won't be able to do all Simon will want me to do.
We will definitely be in the hospital into the weekend now. Shawn is going to download the photos off the camera later (since it is 2 am, and he is actually sleeping), so I will post more photos! Thank you all for your prayers and well wishes. We are ecstatic that Violet Grace has finally arrived, safe and sound.
Wednesday, January 21, 2009
Introducing Violet Grace
S~I planned to do a little more updating, but things got a little crazy. So I am going to keep this short because we are all a little exhausted. Violet Grace was born today at 5:42pm by Cesarean section. The reason for the C-section is apparently Violet likes gymnastics and was doing some tumbling in the womb. She ended up wrapping the umbilical cord around herself twice. After 10 hours of trying with many issues with her heart rate, the C-section was declared. So here is Violet Grace, weighing in at 6 lbs 7 oz and a whopping 18 inches tall (she is our peanut!). And as you can see, just a little hair. Well, that's it for now with a promise to do more tomorrow. Thanks for all your prayers and well wishes!Quick Update
S~So a quick update. The Doctor (we'll call her Dr. B) came in and broke her water. She thinks she was able to get it but was not sure because the water didn't really seem to come out. Could mean her water was already broken and slowly coming out. Teresa is still in good spirits and feeling good. Talk to you soon!
The Arrival of Violet Grace~The Intro
S~Hey there everyone. Well right now Teresa is in a hospital bed, hooked up to an IV and has already received her first dosing of Antibiotics. Things are looking good! We were able to come right in at 7am and are now waiting for our Doctor to get out of a few procedures. Since Teresa will be doing all the leg work today, I will be the emcee for today's main event. So in good emcee style..."LET'S GET READY TO....CONTRACT!"
Here is the plan. Right around ten they will start her on Pitocin to get some contractions going. We are not too concerned about a Pitocin delivery considering both Clare and Simon were Pitocin deliveries. Then around 12:30 the doctor will most likely break her water. From there everyone is expecting a quick delivery!!!
A quick delivery is good with us since Teresa was up at 4am with Simon. I think the Mamma's boy was looking for a little last minute snuggle time as the baby. We plan on doing periodic updates from the hospital, but I know once Teresa gets going she won't let me blog anymore. So in the meantime we will try to keep you up to date as much as possible. Please keep both Teresa and Violet in your prayers today that we get a safe delivery with no complications!
Here is the plan. Right around ten they will start her on Pitocin to get some contractions going. We are not too concerned about a Pitocin delivery considering both Clare and Simon were Pitocin deliveries. Then around 12:30 the doctor will most likely break her water. From there everyone is expecting a quick delivery!!!
A quick delivery is good with us since Teresa was up at 4am with Simon. I think the Mamma's boy was looking for a little last minute snuggle time as the baby. We plan on doing periodic updates from the hospital, but I know once Teresa gets going she won't let me blog anymore. So in the meantime we will try to keep you up to date as much as possible. Please keep both Teresa and Violet in your prayers today that we get a safe delivery with no complications!
Saturday, January 17, 2009
Not-So-Bliss
Then there's burning your arm on the stove; two days later, ripping the scab off on a rusty piece of metal; and now ending up with an infection requiring antibiotics and a tetanus shot. All while 39 weeks pregnant.
Thursday, January 15, 2009
Bliss
The best part about being pregnant is that I can spend an hour soaking in a bubble bath, reading my book, and eating a huge bowl of Vienna Mocha Chunk ice cream drenched in chocolate and caramel sauce, and I DON'T FEEL GUILTY AT ALL!!!!
Tuesday, January 13, 2009
They Come in Threes
For the most part, we live a normal life, and Williams syndrome is not a daily part of it. In fact, when we initially met with Clare's new ENT and went over her medical history with the nurse and the doctor, I never once stated the words "Williams syndrome." I completely forgot to tell the doctor that's what Clare had and forgot to write it down on any of the medical forms. (As I remarked to Shawn later, the doctor was probably wondering what these parents were so freaked out about with anesthesia!!)
But then there are times when one thing after another reminds me over and over what challenges Clare (and us) face. This time, they came in threes.
It started on Sunday. We had a busy day, including visiting Jamie's new school. Since Jamie's current school ends at kindergarten, we are sending him to a different school come fall. The only thing left to do was to physically visit the new school with Jamie. They had an open house on Sunday afternoon, so we all trooped out in the snow (once again!) to visit. Shawn and I both liked the school, and Jamie is excited to go there next year. (Although I don't think he will know anyone in his actual class, he will know other children that attend the school, so he is excited about that.) We met the first grade teacher, saw the classroom, and explored the rest of the school. I have nothing in general against public schools but our preference is to send our children to a Catholic elementary school if we can afford it, they will get a good education, and we like the staff, teachers, and environment (yes, to all three right now). However, Jamie will have to take a test (called a "readiness test") before he can enter the first grade there. Shawn remarked that he wished Clare could also attend this school, but we know that is a scant possibility. In fact, when researching the local Catholic schools, I had a conversation with the principal of this particular school regarding Clare. She was very forthright (which I appreciated) and told me that the school was not equipped to adequately educate a child with Clare's disabilities. Clare would not necessarily be refused admittance, but they did not have the resources to educate children with special needs. Before Jamie started private preschool, Shawn and I had discussion after discussion regarding school choices for all our children. Part of me really wants them all to be in the same school; but, at the same time, if public school is the only option for Clare, I do not want Jamie to go to public school just because that's where Clare has to go. I prefer sending our children to a Catholic school - our faith is very important to us, and I want my children to have the foundation of a solid Catholic education. So I still personally struggle with the decision we have made to send Jamie, Simon, and all other children to private school while navigating the public school system with Clare. It's easy to second-guess your decisions as parents, especially regarding such important choices as education. I just keep hoping we are doing what's best for everyone.
After the end of this long day, Clare had a meltdown before bedtime. I let the kids choose between a cookie or piece of chocolate for a treat. Jamie chose a cookie and Simon chose chocolate. Clare, however, chose both. When told that was not an option, she lost it. We ended up carrying her upstairs in a full fit of hysterics. She was so upset, she was choking and gagging. I finally was able to get her to settle down by laying her in her bed and rubbing her chest. She threw another one today at Jamie's school because she did not want to leave to go home. It took her most of the 25-minute ride home in the car to calm down. Then we had another one after dinner because she wanted to take a bath right away. I never know what to "blame" her tantrums on. I know she is only 3 1/2 years old. I know she is tired at the end of the day, especially after a long day of school. Clare does not nap anymore, so she does not get the rest I think she needs. She had that nasty stomach virus which threw her off her regular schedule for more than a week, and it was somewhat of an adjustment to go back to school after the weather-extended Christmas break. I know of many children with Williams syndrome who have to go on medication for anxiety, etc. I do not believe in any way that we are at that point with Clare, but it does scare me when she gets so out-of-control, and we struggle to help her regain that control. All I think about is her heart working overtime to pump all that blood! I am not sure what the answer is here, but we keep plugging away.
And, finally, Clare's new speech therapist, Judy, hit us with the startling news that Clare's feeding skills are on the level of a 6-9 month old. We knew Clare had some issues with chewing, but had no idea how bad it really was. Part of me is relieved to hear this because it explains so much about how Clare eats and what she prefers to eat (no more feeling like a bad mom because I let my daughter eat macaroni and cheese, cream cheese wraps, and cheese puffs every single day). But then the other part of me feels like an even worse mom because we've had no clue that Clare's oral skills were so poor. As Judy stated, after Clare's surgery, "we have a lot of work to do." Clare's tongue-tie contributes a lot to her poor skills, but she also does not use her molars to bite or chew. She relies on her front teeth for biting and mashes and "gums" her food, rather than chewing it, before swallowing it. We are still seeing so much progress with Clare's speech after months of working with Judy. (Such as, this is literally word-for-word what Clare yelled down the stairs to Shawn after lunch today - "Daddy, you come back here! I am talking to you!") I am praying we see the same progress in her feeding after the surgery. (And I won't even go into the whole insurance issues of making sure we have some sort of coverage for continued weekly therapy - if you've been there, you know the headache we have ahead of us.)
I had an e-mail conversation with a good friend (whose daughter also has a heart condition and has some other challenges as well) about being selfish. I try to be grateful that all this has nothing to do with her heart and is not a life-or-death situation. But I wish that, for once, everything else would go smoothly as well.
But then there are times when one thing after another reminds me over and over what challenges Clare (and us) face. This time, they came in threes.
It started on Sunday. We had a busy day, including visiting Jamie's new school. Since Jamie's current school ends at kindergarten, we are sending him to a different school come fall. The only thing left to do was to physically visit the new school with Jamie. They had an open house on Sunday afternoon, so we all trooped out in the snow (once again!) to visit. Shawn and I both liked the school, and Jamie is excited to go there next year. (Although I don't think he will know anyone in his actual class, he will know other children that attend the school, so he is excited about that.) We met the first grade teacher, saw the classroom, and explored the rest of the school. I have nothing in general against public schools but our preference is to send our children to a Catholic elementary school if we can afford it, they will get a good education, and we like the staff, teachers, and environment (yes, to all three right now). However, Jamie will have to take a test (called a "readiness test") before he can enter the first grade there. Shawn remarked that he wished Clare could also attend this school, but we know that is a scant possibility. In fact, when researching the local Catholic schools, I had a conversation with the principal of this particular school regarding Clare. She was very forthright (which I appreciated) and told me that the school was not equipped to adequately educate a child with Clare's disabilities. Clare would not necessarily be refused admittance, but they did not have the resources to educate children with special needs. Before Jamie started private preschool, Shawn and I had discussion after discussion regarding school choices for all our children. Part of me really wants them all to be in the same school; but, at the same time, if public school is the only option for Clare, I do not want Jamie to go to public school just because that's where Clare has to go. I prefer sending our children to a Catholic school - our faith is very important to us, and I want my children to have the foundation of a solid Catholic education. So I still personally struggle with the decision we have made to send Jamie, Simon, and all other children to private school while navigating the public school system with Clare. It's easy to second-guess your decisions as parents, especially regarding such important choices as education. I just keep hoping we are doing what's best for everyone.
After the end of this long day, Clare had a meltdown before bedtime. I let the kids choose between a cookie or piece of chocolate for a treat. Jamie chose a cookie and Simon chose chocolate. Clare, however, chose both. When told that was not an option, she lost it. We ended up carrying her upstairs in a full fit of hysterics. She was so upset, she was choking and gagging. I finally was able to get her to settle down by laying her in her bed and rubbing her chest. She threw another one today at Jamie's school because she did not want to leave to go home. It took her most of the 25-minute ride home in the car to calm down. Then we had another one after dinner because she wanted to take a bath right away. I never know what to "blame" her tantrums on. I know she is only 3 1/2 years old. I know she is tired at the end of the day, especially after a long day of school. Clare does not nap anymore, so she does not get the rest I think she needs. She had that nasty stomach virus which threw her off her regular schedule for more than a week, and it was somewhat of an adjustment to go back to school after the weather-extended Christmas break. I know of many children with Williams syndrome who have to go on medication for anxiety, etc. I do not believe in any way that we are at that point with Clare, but it does scare me when she gets so out-of-control, and we struggle to help her regain that control. All I think about is her heart working overtime to pump all that blood! I am not sure what the answer is here, but we keep plugging away.
And, finally, Clare's new speech therapist, Judy, hit us with the startling news that Clare's feeding skills are on the level of a 6-9 month old. We knew Clare had some issues with chewing, but had no idea how bad it really was. Part of me is relieved to hear this because it explains so much about how Clare eats and what she prefers to eat (no more feeling like a bad mom because I let my daughter eat macaroni and cheese, cream cheese wraps, and cheese puffs every single day). But then the other part of me feels like an even worse mom because we've had no clue that Clare's oral skills were so poor. As Judy stated, after Clare's surgery, "we have a lot of work to do." Clare's tongue-tie contributes a lot to her poor skills, but she also does not use her molars to bite or chew. She relies on her front teeth for biting and mashes and "gums" her food, rather than chewing it, before swallowing it. We are still seeing so much progress with Clare's speech after months of working with Judy. (Such as, this is literally word-for-word what Clare yelled down the stairs to Shawn after lunch today - "Daddy, you come back here! I am talking to you!") I am praying we see the same progress in her feeding after the surgery. (And I won't even go into the whole insurance issues of making sure we have some sort of coverage for continued weekly therapy - if you've been there, you know the headache we have ahead of us.)
I had an e-mail conversation with a good friend (whose daughter also has a heart condition and has some other challenges as well) about being selfish. I try to be grateful that all this has nothing to do with her heart and is not a life-or-death situation. But I wish that, for once, everything else would go smoothly as well.
Thursday, January 08, 2009
Finally, Someone Gets It
A friend sent me this newspaper clipping from Carolyn Hax's Tell Me About It column in the Washington Post. I loved it!
"Dear Carolyn: My best friend has a child. Her: Exhausted, busy, no time for self, no time for me, etc. Me (no kids): Wow. Sorry. What'd you do today? Her: Park, play group . . .
OK. I've done Internet searches; I've talked to parents. I don't get it. What do stay-at-home moms do all day? Please, no lists of library, grocery store, dry cleaners. . . . I do all those things, too, and I don't do them every day. I guess what I'm asking is: What is a typical day, and why don't moms have time for a call or e-mail? I work and am away from home nine hours a day (plus a few late work events), and I manage to get it all done. I'm feeling like the kid is an excuse to relax and enjoy — not a bad thing at all — but if so, why won't my friend tell me the truth? Is this a contest ("My life is so much harder than yours")? What's the deal? I've got friends with and without kids, and all us child-free folks get the same story and have the same questions. — Tacoma, Wash.
● Dear Tacoma:Relax and enjoy. You're funny.
Or you're lying about having friends with kids.
Or you're taking them at their word that they actually have kids, because you haven't personally been in the same room with them. Internet searches?
I keep wavering between giving you a straight answer and giving my forehead some keyboard. To claim you want to understand — while in the same breath implying that the only logical conclusions are that your mom friends are either lying or competing with you — is disingenuous indeed.
So, since it's validation you seem to want, the real answer is what you get. In list form. When you have young kids, your typical day is: constant attention, from getting them out of bed, fed, clean, dressed; to keeping them out of harm's way; to answering their coos, cries and questions; to having two arms and carrying one kid, one set of car keys and supplies for even the quickest trips, including the latest-to-be-declared-essential piece of molded plastic gear; to keeping them from unshelving books at the library; to enforcing rest times; to staying one step ahead of them lest they get too hungry, tired or bored, any one of which produces the kind of checkout-line screaming that gets the checkout line shaking its head.
It's needing 45 minutes to do what takes others 15.
It's constant vigilance, constant touch, constant use of your voice, constant relegation of your needs to the second tier.
It's constant scrutiny and second-guessing from family members and friends, well-meaning and otherwise. It's resisting the constant temptation to seek short-term relief at everyone's long-term expense.
It's doing all this while concurrently teaching virtually everything — language, manners, safety, resourcefulness, discipline, curiosity, creativity, empathy. Everything.
It's also a choice, yes. And a joy. But if you spent all day, every day, with this brand of joy — and then when you got your first 10 minutes to yourself, you wanted to be alone with your thoughts instead of calling a good friend — a good friend wouldn't judge you, complain about you to mutual friends or marvel at how much more productively she uses her time. Either make a sincere effort to understand, or keep your snit to yourself."
~reprinted without permission
"Dear Carolyn: My best friend has a child. Her: Exhausted, busy, no time for self, no time for me, etc. Me (no kids): Wow. Sorry. What'd you do today? Her: Park, play group . . .
OK. I've done Internet searches; I've talked to parents. I don't get it. What do stay-at-home moms do all day? Please, no lists of library, grocery store, dry cleaners. . . . I do all those things, too, and I don't do them every day. I guess what I'm asking is: What is a typical day, and why don't moms have time for a call or e-mail? I work and am away from home nine hours a day (plus a few late work events), and I manage to get it all done. I'm feeling like the kid is an excuse to relax and enjoy — not a bad thing at all — but if so, why won't my friend tell me the truth? Is this a contest ("My life is so much harder than yours")? What's the deal? I've got friends with and without kids, and all us child-free folks get the same story and have the same questions. — Tacoma, Wash.
● Dear Tacoma:Relax and enjoy. You're funny.
Or you're lying about having friends with kids.
Or you're taking them at their word that they actually have kids, because you haven't personally been in the same room with them. Internet searches?
I keep wavering between giving you a straight answer and giving my forehead some keyboard. To claim you want to understand — while in the same breath implying that the only logical conclusions are that your mom friends are either lying or competing with you — is disingenuous indeed.
So, since it's validation you seem to want, the real answer is what you get. In list form. When you have young kids, your typical day is: constant attention, from getting them out of bed, fed, clean, dressed; to keeping them out of harm's way; to answering their coos, cries and questions; to having two arms and carrying one kid, one set of car keys and supplies for even the quickest trips, including the latest-to-be-declared-essential piece of molded plastic gear; to keeping them from unshelving books at the library; to enforcing rest times; to staying one step ahead of them lest they get too hungry, tired or bored, any one of which produces the kind of checkout-line screaming that gets the checkout line shaking its head.
It's needing 45 minutes to do what takes others 15.
It's constant vigilance, constant touch, constant use of your voice, constant relegation of your needs to the second tier.
It's constant scrutiny and second-guessing from family members and friends, well-meaning and otherwise. It's resisting the constant temptation to seek short-term relief at everyone's long-term expense.
It's doing all this while concurrently teaching virtually everything — language, manners, safety, resourcefulness, discipline, curiosity, creativity, empathy. Everything.
It's also a choice, yes. And a joy. But if you spent all day, every day, with this brand of joy — and then when you got your first 10 minutes to yourself, you wanted to be alone with your thoughts instead of calling a good friend — a good friend wouldn't judge you, complain about you to mutual friends or marvel at how much more productively she uses her time. Either make a sincere effort to understand, or keep your snit to yourself."
~reprinted without permission
Monday, January 05, 2009
Bruiser Boy
As I stated in the last post, 2009 has started off with a bang and poor Simon has gotten the brunt of it so far! Being a typical toddler (and a fearless one at that), he takes multiple spills every day. I am amazed, though, how resilient little kids are, and he very rarely gets more than a little bump as a result of a fall. However, on New Year's Day, Simon took a slide down the stairs on his face. He didn't go too far, but it was far enough to produce a carpet burn down his forehead and nose. I tried to take some photos of the bruiser, but he does not stand still for long! Then later that night, he was goofing off in the bedroom and fell right into the corner of the floor molding, causing a gash out of the corner of his eye. He definitely looks like a rough and tough boy now! Reminds me of another toddler we used to have running around this house...
Top photo is Simon, after the carpet burn but before the eye cut. Bottom photo is Jamie at 17 months old with his bruiser face, complete with stitches in his forehead.
Top photo is Simon, after the carpet burn but before the eye cut. Bottom photo is Jamie at 17 months old with his bruiser face, complete with stitches in his forehead.
Sunday, January 04, 2009
Happy New Year's (Belated!)
We've made it to January (which probably excites me the most because I am ready to have this baby)! And the New Year has started off with a bang by striking down 3/5 of the household with a stomach virus - Clare, Simon, and me. Simon is back on his feet again, but Clare is still totally wiped out. She started vomiting on Friday night and has spent the last two days in bed. At least today is an improvement in that she is spending it in MY bed watching Disney versus sleeping in her bed all day. (Actually, Clare and I spent a good portion of yesterday sleeping in my bed together.) I am somewhat back on my feet, but I still feel very weak. If you've ever had a stomach virus while pregnant you know what agony it is, not only to have the virus and the unpleasant effects of it, but have this little person beating you up inside at the same time. I have to be really good while pregnant about keeping up my calcium and potassium levels on a daily basis or else I get muscle cramps everywhere. Unfortunately, I was not able to do that yesterday, so today I am plagued with cramps and spasms, primarily in my legs. Poor Shawn has been such a trooper with all the invalids in the house! Thankfully he and Jamie escaped unscathed.
On a better note, we met with Clare's new ENT up at Children's Hospital at Dartmouth this week. Armed with our list of concerns regarding a possible frenulectomy and the anesthesia associated with one, we were very satisfied with the new doctor. He answered all of our questions and interacted great with Clare. She did not want to sit on the chair (similar to what is at the dentist's or eye doctor's and surrounded by big, scary-looking equipment), and he was fine with her sitting on my lap on a regular chair while he examined her mouth. He stated that Clare's tongue-tie is moderate to severe, and we would most likely see improvement in speech and eating if it was released. There are two types of procedures that can be done to release the tongue. For now, we are opting for the less invasive procedure. This involves general anesthesia, but only under a mask (no breathing tube, no IV sedation), and literally for a few minutes. Plus by going to Dartmouth, Clare will be under the care of a pediatric anesthesiologist familiar with her type of heart condition and Williams syndrome. The actual procedure will take about 5 minutes, and there is very little recovery (the doctor said Clare will feel as if she bit her tongue too hard). She won't have to come off any of her medications for the procedure, although she will have to fast because of the anesthesia. There will be no diet restrictions and hopefully we will notice improvement. The highest risk (percentage-wise, that is) is that too much scar tissue will develop and Clare would end up more tongue-tied than she already is. If that does happen or the frenulectomy is not successful for any reason, we would proceed to discuss the second option. This is a longer, more invasive procedure and entails more than just the gas mask for minutes and other areas of her mouth are involved. So we are praying that this procedure is a success! Since our baby girl is coming in the next few weeks,we opted for a March 2 surgery date.
On a better note, we met with Clare's new ENT up at Children's Hospital at Dartmouth this week. Armed with our list of concerns regarding a possible frenulectomy and the anesthesia associated with one, we were very satisfied with the new doctor. He answered all of our questions and interacted great with Clare. She did not want to sit on the chair (similar to what is at the dentist's or eye doctor's and surrounded by big, scary-looking equipment), and he was fine with her sitting on my lap on a regular chair while he examined her mouth. He stated that Clare's tongue-tie is moderate to severe, and we would most likely see improvement in speech and eating if it was released. There are two types of procedures that can be done to release the tongue. For now, we are opting for the less invasive procedure. This involves general anesthesia, but only under a mask (no breathing tube, no IV sedation), and literally for a few minutes. Plus by going to Dartmouth, Clare will be under the care of a pediatric anesthesiologist familiar with her type of heart condition and Williams syndrome. The actual procedure will take about 5 minutes, and there is very little recovery (the doctor said Clare will feel as if she bit her tongue too hard). She won't have to come off any of her medications for the procedure, although she will have to fast because of the anesthesia. There will be no diet restrictions and hopefully we will notice improvement. The highest risk (percentage-wise, that is) is that too much scar tissue will develop and Clare would end up more tongue-tied than she already is. If that does happen or the frenulectomy is not successful for any reason, we would proceed to discuss the second option. This is a longer, more invasive procedure and entails more than just the gas mask for minutes and other areas of her mouth are involved. So we are praying that this procedure is a success! Since our baby girl is coming in the next few weeks,we opted for a March 2 surgery date.
Thursday, December 25, 2008
Tuesday, December 23, 2008
SNOW!
This is what happens when it snows for three days straight. (Mind you, we had NO snow on the ground prior to this storm.) And it was a pleasant five degrees out this morning. I don't know if I'm ready for winter, but the kids are!
(And, yes, that is Shawn careening down our yard on the sled!)
Sunday, December 21, 2008
Gearing Up for Everything
I am supposed to be paying bills online, but got sidetracked! I cannot believe there is only five weeks left until my due date. I keep complaining about how this pregnancy is lasting forever, but I know it's just because I am ready to get my energy back, not to mention say good-bye to heartburn, sciatica, pregnancy migraines, anemia, and feeling like I have to vomit every time I bend over. Being pregnant the fourth time around has been so much harder, I think due to the fact that in my last pregnancy, Clare was not mobile at all and Jamie was at an age where he was very independent and not getting into everything. Jamie is still independent and trustworthy, but now I have two monkeys who are into everything in our house. I am very happy to be pregnant again (because I cannot wait to meet our end result!), but I will honestly be so glad when it's over! Right now, I am weeding through my iTunes library as I work on the computer (always multi-tasking!) to put together a playlist for labor. I am aiming to go all natural again, and music was a big focal point for me.
It's been a crazy two weeks around here. Early, early last Friday morning (more than a week ago), NH and a good portion of New England was hit with a huge ice storm. We, and a quarter of a million other people in our state, lost power. Thankfully, we were one of the lucky ones and only lost power for 19 hours. We know many people who lost power for 6-9 days. So we only had to endure one day of living in a chilly house. However, our pumping station for our sewage system lost power as well. That was not restored for 8 days, so we were once again without drainage for over a week. Which means almost no running water. Which in turn means trips to the laundromat, showering at the YMCA, mellow yellow toilet bowls (what fun!), and lots of take-out. Since people across the state lost power, the schools have been closed since that Friday. So the kids are going to have more than a three-week Christmas break! Lucky them - kind of driving mom crazy. The power crisis is past, though, and we're staying cozy and warm through a three-day non-stop snowstorm now. Gotta love winter in New England!
Time for some good ole photos of the beautiful kiddos...
It's been a crazy two weeks around here. Early, early last Friday morning (more than a week ago), NH and a good portion of New England was hit with a huge ice storm. We, and a quarter of a million other people in our state, lost power. Thankfully, we were one of the lucky ones and only lost power for 19 hours. We know many people who lost power for 6-9 days. So we only had to endure one day of living in a chilly house. However, our pumping station for our sewage system lost power as well. That was not restored for 8 days, so we were once again without drainage for over a week. Which means almost no running water. Which in turn means trips to the laundromat, showering at the YMCA, mellow yellow toilet bowls (what fun!), and lots of take-out. Since people across the state lost power, the schools have been closed since that Friday. So the kids are going to have more than a three-week Christmas break! Lucky them - kind of driving mom crazy. The power crisis is past, though, and we're staying cozy and warm through a three-day non-stop snowstorm now. Gotta love winter in New England!
Time for some good ole photos of the beautiful kiddos...
Saturday, December 20, 2008
Touched
Yes, it will make you cry, but it is also so beautiful to read how much a family cherished their young daughter, and I am in awe of the strength and courage this mother possesses. After countless hospital stays, surgeries, and codes, Natasha passed away on December 17. This is the letter her mother wrote to family and friends:
"Dear Family and Friends;
This is an email we hoped we'd never have to send.
Natasha Marie passed away peacefully last night. As usual in her gentle but firm way she made the decision to go home. Her condition became too unstable to transport her to the operating room let alone perform a surgery that would have put her in a lot of pain with no chances for reversing the damages to her kidney and liver.
We were able to hold her in our arms for a long time and tell her how much we loved her, and how grateful we were for her love and the many ways she constantly demonstrated it to us in her laugh, and in her smile, her clapping her hands in joy when we entered her room, and patting her chest each time [her dad] entered the room to indicate she was his princess.
Now her job is to sit in Our Lord's lap and beg him to bring all her family into heaven - us and all of you who have been praying so faithfully for her. I'm sure she is joining all the preparations that must go on in heaven to celebrate Christ's birth. The name Natasha means Child of Christmas. She chose to go home the day the Church starts using the special antiphons eight days before Christmas, probably to help with the preparations.
She will a saint in heaven, skipping and dancing around free of all the encumbrances that limited her physically. While we had been constantly praying for a miracle for Natasha we always asked for one only if it was God's will. God gave Natasha an unusually tough yet most gentle, accepting, and loving temperament that enabled her to bounce back repeatedly with a ready smile after enduring a procedure that would have made most adults cringe. He also gave us many smaller miracles to ensure we had time to get to enjoy her beautiful presence and personality before He took her into His all loving presence. For this we remain eternally grateful. We also remain always in the debt of all of you who loved her and faithfully prayed for her. We could not have done this without you. Now, remember that all of you have a saint in heaven praying you get there so she can thank you in person."
I say a prayer tonight for this family and for all those who are suffering, either physically or emotionally, as Christmas draws closer.
"Dear Family and Friends;
This is an email we hoped we'd never have to send.
Natasha Marie passed away peacefully last night. As usual in her gentle but firm way she made the decision to go home. Her condition became too unstable to transport her to the operating room let alone perform a surgery that would have put her in a lot of pain with no chances for reversing the damages to her kidney and liver.
We were able to hold her in our arms for a long time and tell her how much we loved her, and how grateful we were for her love and the many ways she constantly demonstrated it to us in her laugh, and in her smile, her clapping her hands in joy when we entered her room, and patting her chest each time [her dad] entered the room to indicate she was his princess.
Now her job is to sit in Our Lord's lap and beg him to bring all her family into heaven - us and all of you who have been praying so faithfully for her. I'm sure she is joining all the preparations that must go on in heaven to celebrate Christ's birth. The name Natasha means Child of Christmas. She chose to go home the day the Church starts using the special antiphons eight days before Christmas, probably to help with the preparations.
She will a saint in heaven, skipping and dancing around free of all the encumbrances that limited her physically. While we had been constantly praying for a miracle for Natasha we always asked for one only if it was God's will. God gave Natasha an unusually tough yet most gentle, accepting, and loving temperament that enabled her to bounce back repeatedly with a ready smile after enduring a procedure that would have made most adults cringe. He also gave us many smaller miracles to ensure we had time to get to enjoy her beautiful presence and personality before He took her into His all loving presence. For this we remain eternally grateful. We also remain always in the debt of all of you who loved her and faithfully prayed for her. We could not have done this without you. Now, remember that all of you have a saint in heaven praying you get there so she can thank you in person."
I say a prayer tonight for this family and for all those who are suffering, either physically or emotionally, as Christmas draws closer.
Saturday, December 13, 2008
Reality
It's been a while since I've written what I think of as my "Williams syndrome" posts, but tonight Shawn and I had one of those WS moments.
One of my friend's daughters had her four-year old birthday party tonight at a bounce facility - the kind of place with huge slides, bounce houses, obstacle courses, anything that can be filled with air! Our children were very excited. Jamie and Clare talked about the upcoming party all day, and even Simon wandered around the house saying, "Happy Birthday" (or his version of it!). Once we arrived, Jamie dove right in, and we barely saw him the rest of the evening. Simon needed more supervision, but even he was having fun exploring the bounce houses and discovered he loved walking on the cushions of air and collapsing everywhere. Clare, however, was a different story. She cautiously went into one of the houses (with our help), but almost immediately was overwhelmed by the kids, the bouncing, and the fact that she could not keep her balance (very hard for her to do on unstable ground with her low muscle tone). She wanted out. There was no crying or tantrums, but she ended up just walking around the room watching everyone else. At the other children playing and running and bouncing, red faces and flying limbs from having the time of their lives. Shawn commented to me in passing how hard this was to watch Clare in these situations. I wanted to sit in the middle of the floor and cry, but since I really didn't want to do that in the midst of relative strangers, I kept reminding him (and myself) that Clare was having fun in her own way.
The evening did go better. Eventually Clare became more confident and would enter a bounce house if the kids weren't too crazy or there were only a couple of other children in there. She did fall on her back and laugh and try to stand up, grinning from ear to ear. We brought her favorite cream cheese "sandwich" and milk (while the other kids had pizza and juice boxes), and she loved sitting on the picnic table benches with the other kids (she is starting to insist more frequently on sitting in a regular chair instead of her booster seat). She tried her cake (and left quite a nice portion for Mommy to finish!) and had fun watching the birthday girl open her presents. Every time a new wrapped present appeared, Clare would ask me, "What is it?" and eagerly wait to see what was unopened. I don't know if Clare realizes yet how she is different from other children. But I do, and it hurts.
The most interesting moment of the entire evening was when a little boy from the birthday girl's class arrived. My friend's daughter is one of the "typical" children in a side-by-side classroom with children with special needs. I am pretty sure this boy had Down syndrome. Clare instantly gravitated to him. She kept telling him, "come on," gesturing to the bounce house that she finally found herself comfortable in. The boy and his mom went into the bounce house with Clare, and she had a great time playing with them. This other mom was terrific, including Clare in their play. I wish I could have gone in there with them, but the big baby belly made that almost impossible (I can barely walk on solid ground these days!). And Shawn had his hands full following whirlwind Simon around. I was so glad to see Clare having fun, but at the same time, it still gives me such an ache to see that no one else wanted or attempted to play with Clare, except this other little boy that Clare approached. It made me wonder if that other mom felt the same way I did. But, like me, she had a huge smile on her face and was concentrating on making sure her little boy had a grand time.
I try to be brave and stay positive. Shawn brought it up again in the car on the way home, and I just kept saying that the main thing was that Clare had fun. Maybe she didn't have fun in the same way as the other kids did, but she did have fun. I know life is going to be like that over and over for Clare. She will not always be able to experience things the same way as other children. But I hope that the way she does experience her life is every bit as rewarding and wonderful. I hope she doesn't have the moments that I have sitting alone and crying because of the way she is different. We all love Clare so much, but it is not always easy to be her mommy.
One of my friend's daughters had her four-year old birthday party tonight at a bounce facility - the kind of place with huge slides, bounce houses, obstacle courses, anything that can be filled with air! Our children were very excited. Jamie and Clare talked about the upcoming party all day, and even Simon wandered around the house saying, "Happy Birthday" (or his version of it!). Once we arrived, Jamie dove right in, and we barely saw him the rest of the evening. Simon needed more supervision, but even he was having fun exploring the bounce houses and discovered he loved walking on the cushions of air and collapsing everywhere. Clare, however, was a different story. She cautiously went into one of the houses (with our help), but almost immediately was overwhelmed by the kids, the bouncing, and the fact that she could not keep her balance (very hard for her to do on unstable ground with her low muscle tone). She wanted out. There was no crying or tantrums, but she ended up just walking around the room watching everyone else. At the other children playing and running and bouncing, red faces and flying limbs from having the time of their lives. Shawn commented to me in passing how hard this was to watch Clare in these situations. I wanted to sit in the middle of the floor and cry, but since I really didn't want to do that in the midst of relative strangers, I kept reminding him (and myself) that Clare was having fun in her own way.
The evening did go better. Eventually Clare became more confident and would enter a bounce house if the kids weren't too crazy or there were only a couple of other children in there. She did fall on her back and laugh and try to stand up, grinning from ear to ear. We brought her favorite cream cheese "sandwich" and milk (while the other kids had pizza and juice boxes), and she loved sitting on the picnic table benches with the other kids (she is starting to insist more frequently on sitting in a regular chair instead of her booster seat). She tried her cake (and left quite a nice portion for Mommy to finish!) and had fun watching the birthday girl open her presents. Every time a new wrapped present appeared, Clare would ask me, "What is it?" and eagerly wait to see what was unopened. I don't know if Clare realizes yet how she is different from other children. But I do, and it hurts.
The most interesting moment of the entire evening was when a little boy from the birthday girl's class arrived. My friend's daughter is one of the "typical" children in a side-by-side classroom with children with special needs. I am pretty sure this boy had Down syndrome. Clare instantly gravitated to him. She kept telling him, "come on," gesturing to the bounce house that she finally found herself comfortable in. The boy and his mom went into the bounce house with Clare, and she had a great time playing with them. This other mom was terrific, including Clare in their play. I wish I could have gone in there with them, but the big baby belly made that almost impossible (I can barely walk on solid ground these days!). And Shawn had his hands full following whirlwind Simon around. I was so glad to see Clare having fun, but at the same time, it still gives me such an ache to see that no one else wanted or attempted to play with Clare, except this other little boy that Clare approached. It made me wonder if that other mom felt the same way I did. But, like me, she had a huge smile on her face and was concentrating on making sure her little boy had a grand time.
I try to be brave and stay positive. Shawn brought it up again in the car on the way home, and I just kept saying that the main thing was that Clare had fun. Maybe she didn't have fun in the same way as the other kids did, but she did have fun. I know life is going to be like that over and over for Clare. She will not always be able to experience things the same way as other children. But I hope that the way she does experience her life is every bit as rewarding and wonderful. I hope she doesn't have the moments that I have sitting alone and crying because of the way she is different. We all love Clare so much, but it is not always easy to be her mommy.
Wednesday, December 03, 2008
Out of the Mouths of Babes
Clare's new favorite phrase is: "Leave me alone!" When I remind her that that is not nice and we talk nice to each other in our house, she responds, "Leave me alone, PLEASE!"
I wish I could scream the same thing sometimes!!! Oh, to be young again!
I wish I could scream the same thing sometimes!!! Oh, to be young again!
Saturday, November 29, 2008
Show Time
You can tell a lot about a person and their current state of mind and interests by what's in their DVR list.
Teresa: A Baby Story
Deliver Me
The Baby Diaries
Babies: Special Delivery
Clare: Dora the Explorer
Mickey Mouse Clubhouse
Blues Clues
Little Einsteins
Jamie: Fantastic Four
Spiderman
Power Rangers Jungle Fury
X-Men
Shawn: Survivorman
Survivorman
Survivorman
Survivorman
Teresa: A Baby Story
Deliver Me
The Baby Diaries
Babies: Special Delivery
Clare: Dora the Explorer
Mickey Mouse Clubhouse
Blues Clues
Little Einsteins
Jamie: Fantastic Four
Spiderman
Power Rangers Jungle Fury
X-Men
Shawn: Survivorman
Survivorman
Survivorman
Survivorman
Tuesday, November 25, 2008
Sights Unseen
Thing I never thought I would see:
1 - Clare polishing off a huge bowl of macaroni and cheese at Friday's tonight before anyone else was finished eating.
2 - Simon dipping french fries into my Coke and eating them while I sat and smiled at him.
3 - My feet (well, I haven't seen them yet - two more months!).
4 - Jamie eating cooked carrots and actually admitting that he liked them and asking for more.
5 - One pregnant mama, one silly daddy, and three crazy kids dancing to Queen in the bedroom.
6 - Our kitchen completely painted. (Thank you, honey!)
All in all, a good day!
1 - Clare polishing off a huge bowl of macaroni and cheese at Friday's tonight before anyone else was finished eating.
2 - Simon dipping french fries into my Coke and eating them while I sat and smiled at him.
3 - My feet (well, I haven't seen them yet - two more months!).
4 - Jamie eating cooked carrots and actually admitting that he liked them and asking for more.
5 - One pregnant mama, one silly daddy, and three crazy kids dancing to Queen in the bedroom.
6 - Our kitchen completely painted. (Thank you, honey!)
All in all, a good day!
Saturday, November 15, 2008
Wow
I am not a big fan of photos of myself and am even less a fan of posting them! But I saw this shot and said - Wow, what an amazing backdrop. And then - Wow, what a baby belly!
Friday, November 14, 2008
The Wrench
I had a phone conversation with Clare's cardiologist today regarding the possibility of Clare having a frenulectomy (learning my lingo!). The good news is that the doctor believes Clare is clinically stable enough to undergo the necessary general anesthesia and procedure (which in itself takes minutes), and she has given us the go-ahead to have the surgery done. However, the cardiologist does not want Clare to have the surgery done at our local hospital. Given her cardiac history, Clare needs to go to either Boston Children's Hospital or Dartmouth-Hitchcock Medical Center (both about an hour away), because those are the two closest facilities with pediatric cardiologists and an operating room ready and available if needed. I am more than happy with that decision because that is what makes Shawn and I feel the safest as well - to have Clare under the care of people who deal with these types of children on a daily basis. The wrench is that Clare's ENT does not perform surgeries at either of those places. So now we have a referral with a pediatric otolaryngologist at Children's Hospital at Dartmouth. It's starting the process over again! The earliest we could get Clare an appointment was on December 30, so we're hanging out until then! And, once again, I will find myself hugely pregnant (and then with a newborn) as we prepare Clare and ourselves for another procedure. At least this time, it's not as urgent a surgery, and we cannot wait to see some positive results in her speech and eating.
Tuesday, November 04, 2008
Tongue-Tied
Clare is moderately tongue-tied, and it has been a subject that comes up now and again. Lately, her new speech therapist has asked about the possibility of Clare having her tongue released. Clare is showing progress in her speech, but mainly when it comes to sentence structure (such as adding verbs into her vocabulary and forming complete sentences rather than 2-year old two-word commands). She has not really come too far with her strengthening or articulation, and the therapist feels much of this is due to her limited range of motion in her tongue. This week at therapy, Clare demonstrated that her oral abilities were too weak to even bite into a Ting (a natural cheesy doodle thingy), and we know she has trouble with chewing, biting, and generally eating anything that she cannot swallow immediately or soften in her mouth a little bit.
We last saw the ENT regarding Clare's tongue-tie when she was only months old. At that time, he suggested having it released. However, Clare was unable to have the procedure done while already under anesthesia for a cath since she is on blood thinners during her caths. And her cardiologist did not feel comfortable clearing Clare for a separate procedure under general anesthesia unless it was a life or death situation. Fast forward three years, and we are seriously exploring the option again. Clare has been clinically stable heart-wise for over a year now. She is older, stronger, and has tolerated general anesthesia many times in the past. She would most likely be able to go off her blood thinners for a couple days without any lasting harm to her heart. (This is all my hypothesizing right now!) So now I am in the waiting game to hear back from the cardiologist about the procedure and scheduling appointments with the ENT to receive more details on what the procedure entails.
While we wait, it is very cute to hear Clare remember about completing her consonants at the end of words... such as drawing out the "S" sound in "yes." She sounds like a snake - "yessssssssssssssssssss."
We last saw the ENT regarding Clare's tongue-tie when she was only months old. At that time, he suggested having it released. However, Clare was unable to have the procedure done while already under anesthesia for a cath since she is on blood thinners during her caths. And her cardiologist did not feel comfortable clearing Clare for a separate procedure under general anesthesia unless it was a life or death situation. Fast forward three years, and we are seriously exploring the option again. Clare has been clinically stable heart-wise for over a year now. She is older, stronger, and has tolerated general anesthesia many times in the past. She would most likely be able to go off her blood thinners for a couple days without any lasting harm to her heart. (This is all my hypothesizing right now!) So now I am in the waiting game to hear back from the cardiologist about the procedure and scheduling appointments with the ENT to receive more details on what the procedure entails.
While we wait, it is very cute to hear Clare remember about completing her consonants at the end of words... such as drawing out the "S" sound in "yes." She sounds like a snake - "yessssssssssssssssssss."
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