Sometimes...

I wish my child was normal. That when I turn around in the car to find her smearing herself and the car seat with cream cheese, and I speak to her sternly, she does not launch into a hysterical crying fit. That I didn't then feel horribly guilty about disciplining her and causing her to be so upset. That I didn't worry about what this was doing to her blood pressure, her heart, her aneurysm. That I didn't have to wonder if she truly didn't understand why I was upset and that I was too harsh. That I could just parent her as I would any other 4-year old. That she didn't spend the remainder of the car ride crying in the back, while I did the same up front.

Happy Birthday, Simon!

Happy Birthday to our number-counting, dinosaur-roaring, elephant-stomping, hug-giving, newly-turned 2-year old boy. We love you so much, Simon Joe!

Family

Clare's preschool held a fundraiser at Chuck E. Cheese last week. We were a little apprehensive about doing Chuck E. Cheese with four kids (I haven't been there since Clare was a baby), but it was for a good cause. Everyone had a blast (even Violet enjoyed watching the chaos around her from the safety of the Baby Bjorn). Clare was a little overwhelmed at first by the noise and craziness, but once she scoped out the situation, she enjoyed herself playing games with Shawn and Jamie. I was on Simon patrol and spent my time either watching him play on the toddler climbing gym and slide or putting tokens in the Teletubbies ride. What fun! Clare's teacher snapped some photos and sent us these two great ones. The top photo is our family eating dinner (yes, even Violet is eating!) and the bottom photo is Clare with her teachers, Miss Karin and Miss Pam. Clare loves her teachers and loves school so much. Her teachers are awesome and work so well with the kids. Their love of their job and the kids they teach shine through them. We have been so blessed with Clare's placement in the preschool.

All My Updates

It's been a busy day in our household! And it's 95 degrees today in New Hampshire. Insane! The kids and I played outside for about 20 minutes this morning, then had to call it quits. Way too hot!

My god daughter Faith has been transferred to the NICU at a children's hospital, while her mother remains in a hospital an hour away. We continue to say lots and lots of prayers for this family, who are so dear to us. Having a child with medical needs ourself, we know how tense and stressful this situation is, especially with Faith being only hours old. I cannot imagine not being with my baby right after birth. At least I did not have to be parted from Clare, so my heart goes out to them.

We received two calls from Children's Hospital today about Clare. The first was from the scheduler again. The radiologist's schedule is full until July (and we were told he was "very open" - is that what they mean by that??), so once the July schedule is released, they will call us back to schedule it. She just did not want us waiting around wondering why no one was calling. Clare is on a waiting list if there is a cancellation, though. The second call was from the cardiac nurse who answered three questions for us - 1) Clare will be admitted overnight. 2) Clare will be under general anesthesia. And 3) The radiologist will determine on that day whether he wants to use a coil or glue. If he uses a coil, Clare will have another piece of metal in her for the rest of her life. So now we just wait some more. I love this game!

And finally, Jamie is almost done with his course of steroids and his allergy symptoms have not magically disappeared like they were supposed to. So now we are actually at the point of immunotherapy. I am now doing some more waiting for the nurse who arranges the shots to call me to go over everything. We have to go over Jamie's history again to determine what serum she is to order. Plus Jamie needs to not be actively symptomatic (good luck with that!) before he can start receiving the allergy shots, so it may be a good six weeks or so before that happens (which is usually how long it takes Jamie to clear up). And even more waiting...

Prayers for Faith

Our newest god daughter, Faith Anne, was born this morning. However, she is having trouble breathing and is currently in an oxygen tent. She also may have broken her arm during delivery. We have been eagerly awaiting Faith's arrival, as has her mom and dad and siblings. Please send some prayers Faith's way!

Getting Closer

On the drive home today, I checked our voicemail and we still had not heard back from Children's. With hours in the car ahead of us, I called the nurse who worked with us a couple weeks ago. I was surprised (and thrilled) that I actually reached her and not her voicemail. She instantly knew who I was and, once I explained what I was looking for, she instantly pulled up Clare's information. So we got some answers today!

The interventional radiologist is going to perform a catheter embolization of the blood vessels. The nurse did not know whether the radiologist was going to use a coil (made of either stainless steel or platinum) or liquid glue to repair the vessels, so she is going to get back to us tomorrow with that information. Clare will have a pre-op day the day before the procedure and may have to stay overnight following the embolization to be sure the procedure worked. A cardiac anesthesiologist (versus a general pediatric anesthesiologist) will be on board, given Clare's medical history. We will meet with the anesthesiologist during pre-op, so will find out then exactly what method of anesthesia will be used. The nurse admitted that she did not have all the answers for us as this is a rare case (always lovely to hear those words!). She did say that she believed the anesthesia did not need to be as "deep" as if Clare was undergoing surgery, so hopefully Clare will not need to be intubated for anesthesia. The risks of a catheter embolization are less than those of doing an open surgery on the vessels, so we pray that the radiologist can indeed make this a one-shot deal.

Now we wait for the scheduler to call again, so we can actually get this procedure over with!

This Time I Actually Scream

Clare had a rough night last night. We are still in the hotel in Philadelphia, and she has had a LONG three days. She has had tons of fun, but everyone has been going to bed late and waking up early, so every night, Clare misses out on about 3-4 hours of sleep. She stopped napping over a year ago so she just goes, goes, goes all day and is like a little wilted, droopy flower by the end of the day. (She was the only child who did not sleep at all on the 7-hour car ride down here - even Jamie took a nap.)

The past two days have been in the 90's. We were not prepared for this heat wave and are not at home. Yesterday was my niece's Baptism. During church, Clare's face was flushed and you could tell she was feeling the heat. She has never been good in extremely hot or cold weather. Her body has a hard time adapting to temperatures, so if she becomes overheated, it is very difficult for her to cool down. The heat can also dehydrate Clare quickly, so we always have to be extra-diligent at getting fluids into Clare whenever it is hot. Thankfully, my sister Christina had filled up the kids' sippy cups with ice water prior to going to church, so Clare was able to drink that. Once we arrived at the air-conditioned restaurant for lunch after the Baptism, Clare cooled off and quickly regained her energy and charmed everyone there.

Once we got back to the hotel, Shawn took Jamie and Clare swimming (they had been begging all day), so come bedtime, Clare was exhausted. She also does not eat well when she is out of her home environment. Despite all our coaxing, I think she only ate two slices of cheese and some M&M's all day. Tired and hungry, Clare refused to even eat the offered pop tart at bedtime (one of the only things we had to eat in our hotel room at 9pm that Clare could actually manage) and melted down instead. She finally feel asleep exhausted, but woke up continuously in the night crying. Part of the time, she was not even awake, so Shawn and I alternately rubbed her back until she fell asleep again. One time, she was awake and that is when she told me that her left arm hurt. She had her pajama sleeve pushed up past her elbow on that arm (she does not like her sleeves pushed up, so this is unusual behavior for her) and kept complaining that it hurt. I felt her fistula and it was thrumming rapidly. I did not know what else to do, so I gave her some Tylenol and sat with her for a long time, stroking her head, until she eventually settled down and fell asleep again. I think that was around 2am. Now it is almost 7am, and she is still sleeping.

After that initial phone call on Thursday to schedule Clare's procedure, we have not heard back from Children's Hospital yet with more information on what the "procedure" entails. We are journeying home today, so I am planning on calling the nurse tomorrow who we dealt with while we were down there a couple weeks ago and demand some answers!

I Scream But It Only Comes Out As A Yawn

Children's Hospital called today to schedule Clare's "procedure." However, the woman on the phone had no details beyond that. She had no idea what procedure, what anesthesia process, anything about what the doctors had decided. Shawn explained that we were not scheduling any procedure until we had some information about what exactly was going to happen to Clare. So we're still just waiting some more.

Jamie's allergies, true to form, have now kicked in full-force. He is back to red, swollen, itchy eyes, congestion, cough, headaches, and a general grumpy attitude. The allergist put him on a course of steroids, which Jamie started yesterday. No improvement yet, but the steroids are supposed to wipe out all his allergy symptoms in a day or two.

We are packing up to head down to Philadelphia for a few days for my niece's Baptism. Jamie and Clare are on school break next week, and we're all looking forward to a week free of driving and full of playdates!

Still Need A Plan

Clare saw the interventional radiologist today. He definitely ruled out compression as a means of closing the fistula given the position of the fistula and the number of vessels involved. So that leaves us either surgery by the cardiovascular surgeon or the radiologist can insert a coil to close the opening (in a method similar to the cath procedures). Both require general anesthesia, so the anesthesia risks are the same regardless of which method Clare undergoes. The radiologist is going to conference with the surgeon and anesthesiologist again and determine what is the best plan for Clare. We want to make this a one-shot deal, so Clare does not have to undergo anesthesia twice. Today's visit does not tell us anything new, so we're still just waiting to find out what the plan is and when it is going to happen.

I Love My Kids

Today's words of wisdom:

Simon (as I am changing his diaper): "See you later, poop! Have fun!"

Jamie (after we get in the car from going to the gym): "Whew! I am so glad we went to the gym today. I needed the exercise." (Note - he plays in the play room while I exercise.)

I Need Help

Am I the only person in the world who cleans the inside of her dishwasher?

Easter Photos

My absolute favorite photo from Easter - the pure joy on Clare's face as she goofs off with her Uncle Brian is priceless.

Violet's first Easter - she was adorable in her dress!

Simon's favorite part of Easter dinner was dessert. Grand Dad helps him eat some (not that Simon needs any help in that area!).

Jamie was the king egg hunter again.

Clare finds an egg hidden in the daffodil. (Yes, folks, we only had one daffodil bloom this year.)

This was Simon's first "real" year egg hunting, and he loved it. "More eggs? More eggs?"

Jamie displays his find.

Simon wanted no part of taking Easter photos this year. At least Jamie, Clare, and Violet smiled!

Violet checking out her first Easter basket.

Another Appointment

The next step is Clare has another appointment at Children's Hospital with the interventional radiologist on Friday. He wants to see Clare in person and do another ultrasound of her wrist before proceeding any further with a treatment plan.

As if that isn't enough, Jamie had his six-month dental cleaning this morning (always fun with the gang!). Six months ago, his teeth were beautiful. Now they are riddled with cavities. The hygienist was plying me with questions about Jamie's diet and brushing habits. Other than upping a bunch of his meds, nothing has changed, so I don't know why he suddenly has all these cavities. Leave me alone, lady - I do the best I can! Then she started losing her patience with Jamie because she wanted to get an x-ray and the film was too big for his mouth. The poor kid was trying to follow her directions, but we all know how hard it is to do dental x-rays. How can you expect a 6-year old to not gag when you stuff this huge thing in his mouth that is designed for an adult? I personally like my dentist, but the office is not equipped to handle children. (One of the reasons why we switched Clare to a pediatric dentist, but Jamie had not had an issue with our family dentist. Yet.) So I have an appointment scheduled for him with the pediatric dentist to do an exam. Jamie will most likely need several restorations done under sedation in the near future. Sigh.

And It Just Goes On And On

Now that we are home, and I am lounging in bed with four kids asleep, a piece of chocolate cream pie, and American Idol (even though I am not fond of Quentin Tarentino), the day does not seem quite as long, but it was still a pretty long day.

We spent five hours at Children's Hospital this afternoon for Clare's evaluation of her wrist. She had an ultrasound first. After the tech did her stuff, she wanted to call in a radiologist to take a look at the results. The radiologist informed us that there was indeed an aneurysm in Clare's left wrist. After about an hour and a half of these two women intently studying the ultrasound of Clare's arm, they determined that Clare had an aneurysm and a fistula. They were having some trouble figuring out which veins were involved, but eventually they obtained all the data they needed and sent us on our way.

Next stop was cardiology where we waited for the surgeon to see us. He didn't do anything hands-on with Clare other then feel the site. He explained to us that it was actually rare now to need to do surgery on a fistula. An interventional radiologist (never heard of this occupation before) could use ultrasound and apply compression to the site of the fistula. With the right amount of compression, the fistula would clot on its own and repair itself. Now the fistula would most likely require 1-2 hours of compression for that to happen, so Clare would have to be sedated for the procedure. If that did not work, we would have a plan B, which may be surgery. We asked the surgeon what the fistula meant heart-wise. He said there was definitely increased turbulent blood flow in Clare's left arm as opposed to her right. Arteries are bigger than veins and carry the blood away from the heart. Since there is an opening between the artery and vein, the blood flow is abnormal, which makes Clare's heart work harder. Right now, the fistula is relatively small, but that he wanted this taken care of within the next couple weeks because if the fistula becomes bigger, then Clare's heart will be working that much harder. The surgeon wanted the interventional radiologist to review the ultrasound findings. We met with the nurse practitioner of the cardiologist who oversees Clare's care at Children's. She told us to sit tight in the waiting room while the radiologist looked over the ultrasound, in case they wanted another peek at Clare before we left.

So after more time waiting and waiting, the nurse came back and informed us that one of the interventional radiologists reviewed the ultrasound. He did not feel that the fistula could be repaired by external compression. He wanted the lead interventional radiologist to take a look at the ultrasound, but that doctor was in the middle of a case. They also want a team of doctors on board because the fistula involves one artery and two veins, the position of the fistula in her wrist, and the fact that Clare has Williams syndrome and all the risks associated with that. So the radiologist, cardiologist, anesthesiologist, and the vascular surgeon will discuss the options and what is best for Clare. As the nurse stated to us, this is a unique case. The nurse herself was unsure of what all the options were (surgery versus something else the interventional radiologist could do). Since there were not going to be answers today, she was able to send us on our way. She stated that there should be a plan to go over with us by the end of the week, and that Clare would most likely have something done within the next few weeks. So we have some answers, but still little clue as to what is happening next.

The surgeon did warn us to be mindful of Clare's wrist and that she could do some harm if she fell on that spot. The surgeon said that the area could be painful to Clare because the blood vessels were distended there and there is that thrill you can feel beneath the skin. Shawn is going to have a chat with Clare's teacher and school nurse on Thursday about what's going on (we have been keeping Clare's teacher updated). On a normal day, Clare falls multiple times a day (like she had just fallen at school right before we picked her up this morning and one of her teeth had cut her bottom lip), so we're going to be as extra careful with Clare as we can. (Hard to do with a four-year old sometimes!)

*** After seeing Kerry's comment, I had to add this because, as much as I am whining about all the waiting we have to do with Clare's care, we absolutely are in good hands at Children's. As frustrating as it is to have to wait some more, I am always so thankful to have these amazing doctors so close by who take Williams syndrome seriously and the intricacies it imposes. Clare is not just a normal kid and nothing is routine when it comes to her care.

(And, off subject, the one piece of good news we received today was that all of Violet's thyroid tests came back normal.)

Happy Easter!

From all the little bunnies at our house! Happy Easter!

(Taking photos with four children and having everyone looking at the camera.... yeah, pretty much impossible!)

And Yet More...

I received a call from the cardiovascular surgeon's office today, scheduling an appointment for next week. The cardio from our office here was true to his word and made the call right away to set up an appointment with the surgeon. (Usually things don't happen this fast in the world of medicine, if you've ever been in our shoes!)

The surgeon wants to evaluate Clare next week, so we have an appointment scheduled for Tuesday afternoon at Children's Hospital. She will have an ultrasound done on her wrist and we will meet with the surgeon. That's all the news for now!

Continuation

Over the weekend, Clare's right arm behaved itself, but she frequently complained that her left hand hurt. When we asked where it hurt, she pointed right at the location of her fistula in her left wrist. She was still complaining of the pain on Monday, so I called her cardiologist's office. When the office finally called me back on Tuesday, it was not Clare's cardio but another one from the practice (one we have never met, but spoken with a few times on the phone over the past four years). He apologized for the delay, explaining that Clare's doctor was on vacation, and he had ordered copies of the ER reports to bring him completely up to speed before he talked to us. After quizzing me on various things regarding Clare's fistula, he asked us to come into the office right away so he could check it out himself. He gave me the impression that he did not think Clare's doctor had fully evaluated the fistula and that it needed to be taken care of sooner rather than later (which was what Clare's doctor had suggested - a wait and see approach). Of course, this always happens at 4:30pm - the kids are all hungry and whiny, dinner is in the oven, and Shawn is not home yet. So dinner was turned off, all four children nicely cooperated with getting their shoes and jackets on and back in the car, and Shawn was only 20 minutes away. (We ended up arriving at the doctor's office almost at the same time since herding four kids in and out of the car takes a little time.)

After examining Clare, asking lots of questions, and listening intently to Clare's wrist, the doctor stated that he believes an aneurysm has formed at the site. (The ultrasound at the hospital did not ultrasound past Clare's lower arm, so there is no ultrasound of the site itself.) This is not life-threatening, but definitely should be dealt with. It has only been a week since the vessel problem was diagnosed, and it has progressed fairly quickly over that week. He thanked us for coming right in, explaining that he did not want to start referring Clare out to other doctors when he himself had never even met her. He was going to put in a call to Clare's cardiac surgeon down at Children's and expects we will at least speak with the surgeon's office before the end of the week. Clare will probably have an appointment with the surgeon so he can take a look at the problem himself and discuss where to go from here. The cardiologist believes it would be a fairly simple surgery if Clare has a fistula. I think it would be more complex if it is an aneurysm. Since the vessels are near the skin, the surgeon can most likely make an incision in Clare's wrist and go from there. We now have lots of new questions about what's going on!

Start Walking!

We are participating in the American Heart Walk this year. Eons ago, before I had children and had a job outside the home, Shawn and I participated in the American Heart Walk every year with my company. Little did I know then that, in the future, I would have a personal interest in this event. Over the last few years, we have chosen to walk for Easter Seals since they were providing such outstanding service to Clare, at no expense to us. Since Clare no longer receives any services through Easter Seals, we have chosen to do the Heart Walk instead this year. We have a web page on the Heart Walk website if you are interested in making a donation in honor of Clare. Thank you!

Donate in Honor of Clare Bear

Curiosity

After a long couple of days focused almost solely on Clare and her health, it's nice to muse about the perks of being a mother. One of the things I love about Jamie's age is his curiosity. I don't know if all 6-year olds are like this, but there are days when Jamie's curiosity is insatiable. The other day, we had a deep discussion on the way to school after Jamie asked whether Jesus was around during the time of the dinosaurs. This naturally led into an explanation of the Holy Trinity (awkward and inadequate on my part, inquisitive on his). As in, no, Jesus was not around physically on earth when the dinosaurs were around, but, yes, God was in existence; and how God and Jesus are the same, yet not the same. (Okay, where are Jamie's godparents when you need them? I really need to find a book about explaining the mysteries of our faith to a 6-year old.) I admit I pulled out the old analogy of relating the Trinity to a shamrock - which Jamie grasped fairly well since he had just had his St. Patrick's Day party at school a couple weeks ago.

When he's not asking question after question about the world around him, Jamie also loves his new skills of reading and writing. He carries a notebook and pen around with him to copy anything and everything he sees. He especially loves to do this in the car, so when we get home and I read his notebook, he has quite an eclectic collection of phrases! In school this past month, his class has been learning about outer space. All of their reading, writing, and math activities are focused on the solar system. Every day, we learn new facts about the planets as Jamie learns them. And his memory is incredible. Today Jamie enlightened me about the meaning of the word "year" (as in how many days it takes a planet to complete its orbit around the sun) and which planets had long years and which had short years. He knows how many moons each planet has, what the air is like on Mars, and how no one has ever seen the side of Mercury that faces the sun because it is too hot for anything to go near to take a photo. It is so refreshing to see life through his eyes and what amazement and wonder he has for the world we live in and how it works. I just wish this lovely planet was a little kinder to him sometimes!

Jamie has been fighting more allergy attacks since about January. We finally had our second long-awaited appointment with the allergist at the beginning of the week. I filled the doctor in on how we had taken Jamie off the Zyrtec in November (per the doctor's orders) and tried getting through the winter on just two of his allergy meds. Come January, however, Jamie's allergies kicked back in, so we restarted the Zyrtec. Since where we live was covered in snow and ice during this time, the likely source of Jamie's allergy symptoms were the dust and cats in our house. (And although my housekeeping would not necessarily win any awards, I do dust, vacuum, and clean frequently!) The allergist is a little concerned that Jamie could not survive the winter without being on all his allergy medications since that does not bode well for what will happen when the pollen season is in full force (Jamie being most allergic to trees and grass). Ideally, winter is a time to skate by on minimal meds, so the arsenal can be built up come spring and ready for the attack. Unfortunately, Jamie headed in the opposite direction. We again discussed allergy shots, but the doctor believes we are still at an acceptable level of medication without shots being necessary. The doctor did question me on whether I was okay with the number of doses I had to dispense each day. I did not even crack a smile when I assured him I was on board - after all, what's six more doses when you're already doling out eight to Clare? Sometimes I feel like I'm my own little pharmacy. My kitchen counter has quite a prominent space carved out for our morning meds.

So the plan with Jamie's allergies is to bump up his Zyrtec, add a fourth medication, and use eye drops as well if needed. Sort of like getting ready for battle by storing up extra ammunition. When the pollen season hits, if Jamie's symptoms become out-of-control like they did last spring, the allergist will put Jamie on a short run of steroids to wipe out the allergies. However, if Jamie ends up needing more than 2-3 courses of steroids over the next year, then allergy shots would be the next step. I have been warned that, due to the severity of his allergies at such a young age, allergy shots are most likely sometime in the near future. As long as Jamie is reasonably symptom-free, I want to see how long we can hold that off.

48 Hours

It's been a long two days on pins and needles.

Clare went in for an echo and visit with her cardiologist today. Her echo looked great. There is no change in the narrowing in her pulmonary arteries and aorta. Everything looks beautiful, and she does not need another echo for six more months. We may even be at a point where Clare is outgrowing her stenoses. That is great news but it still does not explain her right arm issues.

So we are at a number of theories right now:

1) Clare has developed an arteriovenous fistula in her left wrist (this is a fact not a theory!). An AV fistula is an abnormal passageway between an artery and a vein. Normally, your blood flows from arteries through capillaries and back to your heart in veins. When an AV fistula is present, blood flows directly from an artery into a vein, bypassing the capillaries. If the volume of diverted blood flow is large, tissues downstream receive less blood supply. Clare most likely developed the fistula as a result of her open heart surgery 3 1/2 years ago, when an arterial line was placed directly into the artery in her left wrist to take blood pressure measurements. Now the fistula is at a point where you can actually feel it vibrating when you hold Clare's left wrist (it is very strange to feel - like a little vibrator was inserted under her skin). One of the theories is that the fistula is "stealing" blood and so there is a decreased blood flow to Clare's other arm - the right arm which was the arm in question the last two nights. Clare's cardio took blood pressure measurements of both Clare's arms and of the fistula itself. All the measurements were consistent (about 99/60 range), so the fistula should not be a problem right now. If it becomes an issue in the future, then it can be surgically repaired.

2) Clare is experiencing Raynaud's Phenomenon (this is a theory). Skin discoloration and decreased temperature occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. It often occurs after being exposed to cold - both nights it happened immediately after Clare returned inside from playing outside in the semi-chilly evening air. This phenomenon can be present by itself or be a symptom of an autoimmune disease. Clare has congenital hypothyroidism, which is considered an autoimmune disorder. There are other disorders as well that can present with this symptom, but there would be more tests and doctor's visits in the future to see what's what. Also, Clare's blood pressure medication, Propranalol, can cause these blood vessel spasms. Our plan for now is to keep an eye on it, and bring it up with her pediatrician at her annual physical in a couple weeks. If it is a symptom of another disorder, then the pediatrician is our route right now, not the cardiologist.

3) I am ecstatic to say that Theory #3, a blood clot, has now been officially ruled out. Clare's cardio looked at her blood draw numbers from Wednesday night at the ER and realized that the ER doc was comparing the numbers to those of an adult patient (gotta love the local ER!). So she wanted to compare them against a pediatric patient (duh) and re-run the tests today. After Clare's traumatic blood draw experience at the ER, she flipped out the minute we walked into the lab at the doctor's office this afternoon. I loathe putting Clare through that (especially since the whole time, she is sitting on my lap, screaming "Help me, Mama"), but her numbers today were normal. So no clots!

The only really bad news today was that Clare's cardio is leaving the practice and moving further south. We have always had a great relationship with Clare's doctor, and I feel like she truly knows Clare inside and out. We did meet the cardiologist who will be taking charge of Clare's care. He is an interventional cardiologist at Children's Hospital at Dartmouth, which means he can actually perform cath procedures. So she is still in good hands, but I am not eager to have to build a new relationship with one of the most important people in Clare's life (health-wise, that is).

A huge weight has been lifted off my chest that Clare's heart is not the cause of what's been going on the last couple of days. We still do not have THE answer, but at least we have some direction now. And peace of mind.

It Must Be April

Yesterday was April 1, and, true to form, Clare landed in the ER.

It started in the morning when she did not want to eat breakfast. She did not have school yesterday (as it is her one day off), but had a dentist appointment in the morning. I gave her the dose of amoxicillin she needs to take prior to any dental work. Antibiotics always give Clare diarrhea, so I knew that was coming. She did great during the appointment (with minimal crying), but refused to eat lunch as well (and it was a treat - Burger King lunch complete with chocolate milk, her favorite). I chalked it up to the fact that maybe she had an upset stomach from the antibiotics, but could not coax her to eat anything. We were at a Burger King with a play place and, towards the end, she was just laying on one of the mats inside the tunnel structure, not moving. Again, I thought maybe she was just tired from a morning of running around, so we dropped Jamie off at school and headed home. Since Simon and Violet were napping, Clare and I laid on my bed and rested as well (as I've said before, the girl refuses to nap!). She kept saying she didn't feel good, and I asked her where her boo boo was. She said her hands hurt, which I thought was funny. She still would not eat anything, but Clare has been up and down with the virus we've all had plus I still thought her stomach might be upset from the morning's medication (excusing the bad mommy who didn't listen to her daughter!). And I am never sure when we ask Clare where it hurts, if she truly is capable of telling us yet.

Come dinner time, Clare still was not eating and complained again that her hand hurt. When I felt her right hand, it was ice cold. The kids had been playing outside prior to dinner (and it was a tad chilly), so I felt her left hand. The left hand and arm were nice and warm. I felt Clare's right hand and arm again, and they were freezing. That's when we started to get worried. We called her cardiologist who did not like the sound of that at all. She instructed us to take Clare to the local ER immediately and tell them to doppler her arm for a blood clot. Of course, that totally freaked us out! Shawn took Clare right over, and I had the fun job of waiting at home with the other kids. I truly don't know what is worse - being the parent uncomfortable (and without dinner) at the ER for hours on end with a sick child or the one waiting at home, comfortable but with no clue what was going on and keeping a brave face on for the sake of the other children.

Shawn and Clare were at the ER past midnight. The ER staff also noted the drastic temperature difference between Clare's arms. The nurse was able to pinpoint in Clare's right arm where the temperature changed. The ultrasound, however, did not find any sign of a clot in her arms, so Clare's cardiologist wanted the ER doc to take blood pressure measurements on all four extremities and run some blood work. The blood pressure measurements were in a good range for Clare, so that was good. However, the blood work did show abnormalities in Clare's blood clotting factors. Even though they found no actual clot on the doppler, something is not right in Clare's body right now. Clare's cardiologist talked to a vascular surgeon about Clare's blood work results. The ER had already run all the diagnostic tests that the vascular surgeon recommended. The cardio wanted to discuss Clare more with her colleagues at Children's Hospital in Lebanon (the children's hospital affiliated with our cardiology practice), so she discharged Clare for the night with the order to call her office this morning.

After a very late night, Clare woke up for about an hour this morning, then went back to sleep for a while. I have spoken with Clare's cardiologist this morning. She is not comfortable with the results of Clare's bloodwork, especially given that, with Williams syndrome, clots can develop easily. Clare's arm and hand feel better this morning, but she still does not feel good and is very tired. Clare also still is not eating or drinking much, but we really have to push the fluids since hydration is extremely important in keeping Clare's blood vessels in good shape. So now we're in the waiting game. Clare's cardio put a call into the cardiologist at Boston Children's Hospital, and we are waiting to hear what the game plan is. I hate the waiting part of this. I just want some answers. It drives me up the wall to sit here outwardly calm, while inside I am so agitated. Shawn is upstairs with Clare and Violet (Clare is awake again, but complaining of being tired), and I am downstairs with Jamie and Simon (who are coloring while I type).

I think the only certain thing today, though, is that it looks like Clare's tongue surgery may be cancelled once again.

Happy Birthday, Princess!

Clare turns four years old today! Happy Birthday!

We had a princess party (of course!) this weekend for Princess Clare. Shawn bought her a new Cinderella dress from the Disney store (her first "real" princess dress), and Clare truly looked like a princess. She has been so excited about her birthday and princess party for days. This was the first time I think that Clare understood it was her birthday, and she was so thrilled about the whole day. There were games (Kiss the Frog and Pass the Tiara), presents, a pinata, and a castle cake. Clare enjoyed the idea of the castle cake more than the eating of the cake - she is not a big fan of cake or candy, unless it's chocolate, but she loved looking at her cake. And she had fun goofing off with the cake for her friends!

I say it every year, but it's hard to believe that Clare is now four. Four just sounds so old. Where did my baby go?? Who is this big girl who looks so tall these days (relatively so!)? Clare is learning how to play games with Jamie (she especially loves her new animal match-up memory game from Auntie Becky, Jasmine, and Alex - we play it multiple times a day), she speaks in complete sentences the majority of the time, she even has a preference with clothing now. It is so exciting to see Clare growing up!

We received Clare's second trimester report card and IEP progress report yesterday. We are very pleased with Clare's progress at school, and it is obvious that she loves school, her teachers, and her classmates. And they love her, too! Last trimester, she received "Satisfactory" in all areas except for her attention span, where she received a "lower" designation. We were pleased to see she has moved up to a "Satisfactory" in that as well! (It's kind of odd to me the way her report card levels are grouped, but it goes "Mastered," "Satisfactory," and "Making Progress But Not At Expected Rate.") Her IEP review shows progress in all areas - speech, occupational, and physical therapies. Clare still has much to work on, but that is the point of school! She brought in cupcakes to share with her classmates and eagerly told us how they sang "Happy Birthday" to her at snack time. (And she informed us that her classmates sang "Happy Birthday, Clare" but that she sang "Happy Birthday, Princess!")

Clare also had her pre-op physical yesterday for her surgery next Monday, and she is good to go! Finally healthy! Let's keep her that way!

LLL Article

While looking some stuff up online (mainly because Violet has thrush right now and she is my first baby to develop this), I stumbled across this article on the La Leche League website. Obviously I knew this piece existed because I wrote it and saw it published in New Beginnings magazine, but I was surprised it was on the Internet. It was neat to re-read my words of three years ago about the beginning of our journey with Clare from my breastfeeding perspective. (There's your warning about what the piece is about!)

Clare's Story

Oops

When your back is turned loading the dishwasher, and your almost 2-year old keeps saying from his high chair, "Mama, eyes. Mama, eyes," you really shouldn't just keep responding "mmmm" and continuing what you are doing without looking over at the said almost 2-year old. (In my defense, Simon says about a trillion times a day, "Mama, fill-in-the-blanks-of-whatever-he-wants-me-to-look-at.") So it serves me right that when I finally turned around, Simon had decorated his entire face and a good portion of his hair with ketchup. If only the digital camera hadn't been upstairs and the fact that even the smell of that much ketchup makes me queasy (I am not a ketchup fan at all!), I could have shared his red loveliness with all of you.

More Clare

Okay, all you seasoned moms have convinced me to keep on trucking with Clare's therapy! Thank you!

Clare is still not 100% herself, which is contributing to her increased tiredness as well (and her looming echo in April can't come soon enough so I can have some peace of mind that it's not her heart acting up). The last three winters have been so tough on Clare health-wise. Once she catches a cold, she cannot get rid of it easily and usually coughs and has congestion for the rest of the winter. The last two Aprils have landed Clare in the hospital for severe dehydration following a stomach virus. I think by April, her immune system is just run down from fighting colds all winter that one virus wipes her out entirely. Then she usually bounces back in the spring and is fine until the next winter. This winter has been worse than the previous two with Clare and illness, so I pray that we're getting the brunt of it now and not gearing up for a complete breakdown come next month.

Clare is still coughing and congested from her on-again/off-again cold/virus/bacterial infection/whatever she's had for weeks. Like this morning, Clare woke up covered in vomit because she had coughed so hard, she set off her gag reflex and threw up in her bed. ((I thought it was bad cleaning vomit from the top bunk down to the bottom bunk - this was the first time I had to clean it out of Clare's morning rat's nest of tangled curls. Sorry for the details, but it was gross!) That must have helped because other than looking extremely tired, Clare has been in good spirits for the rest of the day. I want her to rest, but she refused to nap, so I don't feel bad at all about letting her lounge in bed this afternoon watching "Curious George" while Simon and Violet nap, Jamie is at school, and I play on the computer! (Just while I am waiting for Clare's bedspread to finish in the dryer, of course.)

Signs and Colors

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.

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!

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!

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!

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.

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?)

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.

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!

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.

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.

(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!)

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.

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.

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.

Happy Valentine's Day!

Will you be mine??

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!

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.

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!

(I've been trying to upload a video taken at Bounce U, but Blogger has not been cooperative. I will keep on trying!)

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!

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!

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!

I Feel Pretty

"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.

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.