Friday, December 28, 2007

Christmas 2007

Christmas with two little ones in the house was as we expected -- chaos! Beth and Elliott had a marvelous time opening presents and enjoying each other's toys. Poor Beth had a cough and runny nose (and still does). Elliott, too, has a cough but that hasn't dampened his enthusiasm.

Beth has three new teeth in the last two weeks. She has a few phrases including:
" 'scuze me' (when she burbs)
"pick that up" (when something is out of order)
"MINE" (for the presents Elliott steals)
"nooo" (with a cute lilt at the end)
"baby" (among her favorite toys)
"boooooookkkk!" (which she utters much to often)

Yes, I never thought I would tire of book reading. Beth has an insatiable appetite for reading. I'm not sure if she loves sitting on your lap or loves reading but in any event, she is insistent and persistent. Thank you to all our friends and family who contributed books to these two. We need all the variety we can get!

Both are amazing, healthy children. Beth continues to grow slowly. Our greatest gift of all time is her survival and excellent health.

Monday, December 10, 2007

Asherman's Syndrome Article

This is a link to a news article in The Times (UK) about Asherman's Syndrome (AS). This is the first major news story to break about AS which is the condition I developed after delivering Elliott in 2001. It took over a year to get my doctor to take me seriously when I said something was wrong and another 6 months to get a definitive diagnosis. If you have time to read this article, you'll understand more about the process of diagnosis.

The short story is that insurance companies typically don't cover the cost to correct a condition like AS, assuming it can be reversed. And, finding a qualified doctor is very difficult, too. Fortunately there are 2 qualified doctors in California and one of the best was located in Los Gatos. Mike and I made 5 trips there for surgery and I made countless drives to follow-up appointments. After running out of patience and dipping seriously into our savings, I elected to have a final surgery by an excellent doctor at the Northern California Fertility Center - Dr. Gilliland. He did a great job in the final steps and ultimately we did conceive despite one completely blocked fallopian tube. You know the rest of the story...

The full story of getting pregnant is too long to write here. Perhaps I will resurrect that book...


Today I finally completed a process that I started nearly 3 years ago; I passed a 3+ hour exam to earn a special certification in my profession, public relations. It’s funny how significant this process has become. There are actually very few professionals in my field who have this certification and I think that it isn’t because it was difficult to pass the test, but rather that the process was a exceptionally complicated to complete.

I started this process roughly three years ago right in the midst of our fertility problems. Women who have gone through this will understand where I coming from… Every day you vacillate between giving up and forging ahead with your pregnancy quest. Sometimes I wanted only to focus on the visceral urge to conceive and thus do everything possible to have a baby (including eliminating all stressors in my life). Other moments I wanted desperately to move on, choosing to focus on the wonderful child we already had and my nice little consulting business.

One day in Spring 2005 after we had battled with insurance companies and doctors and I had gone through 6 surgeries and numerous invasive procedures, I decided I had to move forward. I submitted my application to the national organization, Public Relations Society of America, for my Accreditation in Public Relations (APR). The process required acceptance with a written application, a panel review and finally a 3+ hour exam. I had to pass each phase before being moved on. The application was a piece of cake and I was accepted into the program. Great, right? Well it couldn’t have come at a worse time. My friends and family will remember how horribly sick I was in the early months of this pregnancy and looking back, now we know why.

I had to cancel my first panel review in part because I was too sick to make the drive to San Francisco to find an active enough group to sit for my review. Additionally, before the review I had to complete what eventually become an 18-page review of my qualifications. As sick as I was, I could barely get Elliott up, dressed and fed each day. Then I ended up the hospital and everything important in our life fell apart.

Some months after Beth did come home and I felt life returning to a normal state, I returned to my APR process. The PRSA granted me two extensions and I finally had my panel review in October 2007 and the exam on Monday, December 10. Now, it is done. In a few weeks, I’ll have my official letter from the PRSA and I can add a few more letters after my name.

What does it all mean? With everything that has happened in the time period it took to earn my APR, not nearly as much as I thought it would. Perhaps in a few months or years I’ll appreciate that I got through the process. The certification boosts my credentials and certainly the studying process increased my global understanding of the profession. Maybe the same stick-to-it-ivness that got me through this is what helped me get pregnant after so many doctors told me I never would. And certainly this same fortitude helped me make it through our 7+ week ordeal in the hospital. That is what means more to me. Beth is alive and here. I wonder if I can B.E.T.H. after my name on my business card?

Monday, November 26, 2007

Beth Gets Into Her Work

This is a typical scene. Beth loves to climb up on the table because she knows she'll get our attention this way. We don't want her to fall onto the wood floor so she gets immediate feedback from us.

Her lying on her tummy is another common sight. She REALLY gets into her work be it coloring on paper or coloring on the carpet, putting puzzles together or shoving puzzle pieces behind the cushions. She has an amazing ability to concentrate on a task -- at least when she FEELS like concentrating. Sound typical for a toddler?

Everyone has been sick over the holiday so we are all very tired and cranky. However, being with family has been especially important this year. Without Barry here to celebrate life and the joys of family, it has been difficult to stay focused. Barry loved Thanksgiving because the four-day holiday gave him more time to be with his family. We miss him terribly. I don't even know how to give him adequate tribute. All I can relay is that his presence, his raucous laugh and fierce dedication to his family are hugely missed. You were one in a billion, Barry.

Wednesday, November 14, 2007

R2D2, ET and Beth Marie

I have a theory...It all started a few weeks ago when ET was playing on one of the cable channels. We hadn't seen it in a while, having been reluctant to let Elliott see 1) another boy on TV with his name lest he get an even LARGER ego, and 2) ET seem to perish after the scary government folks poke and prod him unmercilessly. Now that Elliott is six it seemed the right time to let Elliott watch the movie.

Do you remember when ET got angry or excited how he would rock back and forth and let out that high-pitched EIIIEEEKKK (or whatever sound he made)? It looked strangely familiar to us... Soon Beth launched into one of her ranting fits and we made the connection.

Then I got to thinking about R2D2. Remember when he sticks his probe into the wall (was it in Empire Strikes Back) and gets shocked across the room? Remember how R2D2 would get angry or excited and start rocking back and forth and let out his own little EEIIIIIEEEKKK? Don't they all seem strangely similar?

Here's my theory...Steven Speilberg had toddlers about 25 years ago when he made those movies...Ah, he is human. Clearly he is a brilliant human but none the less, he takes inspiration from his children just like the rest of us.

Wednesday, October 31, 2007

Halloween Photos

Whew! We made it. All told, we have been in these costumes 4 times in the last 7 days. We started off at Elliott's school festival last Friday. Then we visited Bampa yesterday. We dressed up in them two times today: once for a party at My Gym and again to go Trick-or-Treating. Beth handled herself pretty well considering the gyrations it takes to pull the Ladybug suit over her head. Yes, I made her costume. It really wasn't too hard. A few squares of Felt goes a long way. I have been shopping for just the right hat for weeks but in the end, had to use one of her existing hats to attach the antennae. I was trying to find a cute little hat like the Ladybug on James and the Giant Peach. ...the things we mommies will go through to dress our little ones.

As you can see Elliott was a ninja. It was hard to break down and make this costume when it was just staring at me from a rack at Target for $9.99. We added a few touches and now it resides in his dress up bin (which is big enough for a small elephant to play in!). I wonder how large Beth's dress up bin will be by the time she is six years old?

Tuesday, October 30, 2007

Wow, She is Tiny

Okay, I am official tired of saying Beth is 20 months old but really should be about 16 months old. If she weren't so darn small, I could just happily relay her age. I think I'll just stay vague and respond with "a little over a year old." Think that will do??

We are bushed. Beth is a tyrant albeit a cute and lovable one. Don't get me wrong. It took amazing effort to get her here and I'm extremely thankful that she is doing so well. However, you would think that her dimuative size would suggest a timid spirit. No way, Jose. Folks who know the story say it was her spirit that kept her alive during those scary days between week 18 and 26 and then in the toughest days in the NICU.

Okay, so her spirit kept her going...what is keeping Daddy and me going? I guess I would just like her to quiet down a little and stop trying to tear the house down!
...just a moment of whining...

This is a photo of my dad who has late stage Alzheimer's Disease. We have had a hard time getting him to open his eyes lately. Dad loves chocolate and I discovered today that he can be "bought" for a few Junior Mints! He loved them and kept reaching out for more just waiting for me to plop one in. IN fact, this photo isn't very good because you can see that Elliott, Beth and Dad are all sucking on Junior Mints (see the box in our ladybug's hand?). Find joy where you can, says my mom.

Monday, October 15, 2007

Elliott is a Two-wheeler; Beth Weighs 18 pounds!

Hard to believe that Beth is 20 months old and just 18 pounds (exactly), but it is true. Tiny but a trouble-maker is our girl. We're trying to figure out the routine for her witching hour, which is 5-7 p.m. each night. She gets a second wind at 7:00 and is then once again fun to be around. Before that, however, she is a holy terror!. She climbs on the table, pulls down the table cloth or any glass of water she can find. We've taken to moving the chairs onto the carpet, which means that now I never do sit down. She digs in drawers and bangs on the glass door. She digs in the game cabinet trying to get everything all over the floor -- all the while she is wailing somethin' fierce!

I've tried feeding her at 5 and putting her to bed at 7:00 but that backfired. Instead, she slept an hour and cried until 10 p.m. Tonight we tried feeding her at 5:00 and then sitting her down with Elliott to watch a little TV while Daddy and I ate dinner. This worked a little better.

Elliott finally got the gist of two-wheel bike riding. He is no safely (ney, he'll never be safe) a bike rider. We are aiming for the 12 mile ride around our little lake. He can make in a tag along so now it is just a short while for real bike riding!

Elliott turned 6 a few weeks ago. I am so proud of our son. He is growing up quickly and despite unbounded exuberance that sometimes gets him into trouble, he is polite and wants to be a good boy. We've started a nickle system where he can earn or lose nickles depending on behavior or just nice things. It is working well. He beams when you give him a nickle. There are two rolls in my jar at when he earns them all away, he gets both rolls and a special coupon for golf, bowling or some other fun activity.

Friday, September 28, 2007

Back-to-school Colds and Such

Elliott turns six next week! He is a delightful little boy even if I wish I could pick him up by his ears sometimes to get his attention or stop him from chasing his sister!

For Elliott's birthday it appears we are circulating a cold around the house; first Elliott, then Daddy, then to Beth and back to Elliott. I'm not really sure if I contracted it or if I'm just grumpy with the shortening days and cooler weather. I have nothing to be grumpy about since we consider these days or normalcy to be such a gift.

Our friend's son has been battling Aplastic Anemia and recently underwent a bone marrow transplant. He has gone over 100 days since the transplant and is doing very well with the exception of some oddities with his skin. There is a possibility that he has something called Graft-vs-Host-Disease. His family has amazed me with their faith and poise during this ordeal. His mother and I have developed a special bond having gone through such times when you felt you would lose your child. Thanks to God that her son is doing well yet he will always live with special medications and concerns. The bone marrow gave him a second chance at life but amazingly, he was ready to go to Heaven if that is where God wanted him. I'm in awe...

So, I almost feel lucky in these days when Beth nurses a cold and I know that my cuddles and a bit of Motrin will ease her discomfort. I don't fear for her anymore but I certainly don't take a moment for granted. And, Elliott...well we couldn't have been any luckier to have such a healthy and happy child.

Saturday, September 15, 2007

Mercy San Juan NICU Reunion

The Mercy NICU Reunion is a special day for us to reconnect with some of the nurses and doctors who took care of Beth (and Mommy and Daddy) when Beth was so tiny and fragile. These photos show Joan, our primary nurse and wonderful friend; Simon, one of her many respiratory therapists who saved her life on MANY occasions; Lori, a sweet nurse who was with us on our discharge day; and Kathy, the developmental specialist whom I credit for saving Beth from developing an oral aversion and sensory processing disorder.

This list doesn't do justice to all the great people in the Mercy NICU. I always knew they were special but lately, I've learned just how special. I am a member of a group of moms who blog about their premature babies. These babies have been in NICU's around the country (I think our numbers reach nearly 200 moms). Some of those NICUs have terrible visitation policies (two-hour limits in some cases), and a climate not conducive to helping parents cope with the fear of having a baby in a NICU. Most hospitals do an excellent job and as in any profession, there are people who love their jobs and some who apparently don't. But our experience with medical personnel throughout all points of our ordeal(with the exception of one doctor), left Mike and I with an awesome respect for nurses, doctors, janitorial staff, volunteers, chaplains, dietary staff, and secretaries.

Someday we'll find a way to pay it forward.

Friday, September 14, 2007

Going to the Poor House

If you know our family history with horses, you know that these two pictures could spell T-R-O-U-B-L-E (or the poor house)! Beth and Elliott had a chance to ride ponies at a friend's 6th birthday party. Beth settled in like she was born to be an equestrian. If Gramma had been at the party I think there would have been a flood of tears (or hysterical giggles).

Elliott was very comfortable around the ponies and showed amazing poise for a little boy who is sometimes afraid of large dogs. Isn't it amazing how they surprise you??

During the past week, Beth has been fighting a virus. Her fever bounced from 99 degrees to 102.5. She managed to kick the bugs by herself and was in reasonably good spirits for the 3-4 days of discomfort. Oddly, I can't figure out where she got it or why Elliott, Mike or I didn't get it too. I guess she'll be the canary throughout this coming winter. We are pleased that she is handling life's little colds and viruses without much difficulty.

You might recall that Elliott was seeing a neurologist for migraine headaches. We had our 3 month appointment to discuss the MRI results with his doctor who told us that Elliott's brain looks nice and normal. We'll just have to monitor what triggers the migraines (although we have a pretty good idea about that already).

Dr. Asaikar told me that migraines fall into three patterns for children. Some get them in clusters and then show nothing for 3-6 months before another round starts. Some children get migraines very frequently and at regular intervals. Still others get them at a young age and never again until they become adults. These things are very hard to understand especially when there is no physical reason why they happen. As in most people, Elliott's are most likely triggered by stresses and allergy attacks. He has had two migraines when at altitude so it is possible that a combination of the bright mountain sun and pine allergens could be our culprits.
I am very grateful that he has no other issues that could be causing these. And, as for our amazing daughter, I am doubly grateful that she is as healthy as a ...dare I say it??! (That's for you Mom!)

Friday, August 31, 2007

19 Months Old Today

Today is Beth's 19-month birthday. Yes, we are still celebrating every little milestone. No surprises in her development except that the jury (Gramma, Daddy, me, various friends and her brother) have decided that she definitely has more energy then her brother. It doesn't seem possible but it cannot be disputed that this little girl is into everything, all the time, and in the biggest way possible.

I can't tell you how many times I pull her off the chairs underneath the kitchen table. If they are pulled out, she climbs up and then balances precariously on the edge, nearly tipping them over backwards. If they are pushed in, she climbs up anyway and then screams like a banshee each time she tries to sit up and bumps her head. I have to hold her head down while gingerly sliding them out from under the table apron. If someone happens to be sitting on one, she climbs up the back or tries to sidle in behind you.

She absolutely cannot sit down, not even on your lap. She has to stand up and walk all over the tops of my thighs, squishing that nice sensitive fat that so unbecomingly graces my thighs. She walks up my body like a ladder until she is perched on my shoulders or nearly falling over the back.

Her favorite spot is on top of the playtable which is thankfully only two feet tall. I can't tell you how many tumbles she has taken off of that thing! Her second favorite spot is standing on top of the back of the couch, giggling as she sees my extreme concern and agitation that she has climbed up there AGAIN!

Her giggle at getting us frustrated is nearly enough to get her out of trouble but we're trying not to encourage her antics. Today she even had this deep little rumble that implied she had far too much intelligence for only 17 pounds!

Yes, she is driving me bananas! No, I can't believe I would ever say that. I am often transported back to those NICU days where I sat crying next to her isolette. One of the respiratory therapists, Gail, who knew a thing or two about babies (like all of the NICU nurses). She used to tell me "Just wait. On a year you'll be coming to the NICU begging us to take her back!" How right she was! ;-)

How wonderful it is to laugh at all this. When I'm not soaking my feet, that is...

Perhaps this photo of Elliott sums up how I feel by the end of the day...He can cause a few headaches, too but what a great little boy he has become. God has truly blessed us!

Wednesday, August 15, 2007

Just 17 Pounds at 18 Months

Beth's 18-month appointment found her healthy as a horse (albeit a super-miniature horse). She has actually lost 2 ounces in the last month but now measures 29 inches. Our doctor assures us that her size is of little concern because she is active, intelligent and in excellent health. She also continues to gain in a steady, slow rate.

We are so normalized that our trip to Tahoe didn't even register as something to be concerned about. We were initially warned to keep her away from high altitude because preemies can experience apnea in the lower O2 levels found above sea level. This didn't even register until I was driving to nearly 8,000 feet on my way up highway 88 two weeks ago. Beth had been sleeping so soundly in the car when suddently, I remembered the early cautions from our NICU doctors. I whipped my head around (thankfully keeping the car in its own lane) to find her "pink" and happily asleep in the car seat. ...I let her sleep in our bed the first night we stayed in Lake Tahoe...just to be sure.

I think this was the last concern we had about Beth's health. The books about preemies say that we still have other things to watch for but neither Dr. Arab (a complete pediatric genius in my opinion), Mike or I expect her life to be anything other than normal.
I am a member of a group of moms who blog about their premature babies. I feel guilty when I read their entries about the many scary health problems their babies have. How did we get so lucky? I'll never know the answer and I am reluctant to say that God chooses exactly how things will go for He doesn't want His children to suffer or be sad. I do believe in His power but also believe there are other forces on this Earth, including our own.

I have learned one lesson however. Prayer is a powerful tool if not only to sway God's decision that something should go the direction one advocates for, but also to help one focus on the positive outcome. Believing that everything will turn out alright is the first step to reaching that desired state.

I believe so strongly that envisioning a positive outcome is powerful that I have nearly completed writing a book about this idea. I'm not sure if the book will actually get published [or that I'll feel comfortable sharing it with the masses (hummm, why did I start this blog??)]. The process of writing it has helped me sort through the events leading up to Beth's birth (and fortunately culminates in a happy ending).

For now, I continue to read about other preemies and with each story, I thank God that Beth is alive and healthy. I don't have the concrete answer about how that outcome transpired. I'm just truly thankful that it happened this way. And I, for one, do believe in miracles.

Sunday, August 12, 2007

Tahoe Vacation

Here is a collection of photos from our trip to Lake Tahoe. We spent nearly two weeks in a wonderful home in Meek's Bay and just returned home on Saturday. My mother rented the house from a friend and various family members stopped in for a few days or week.

Among these images are Uncle Mark and Gramma doing "Hip-Hip-Horrays" for Beth (she loved the enthusisam), Nicole, Chris and Elliott with goofy hair, Elliott lounging on the canoe and Beth sleeping on the beach.

More photos and stories tomorrow but I felt I had to get something up since I've been enjoying my vacation too much and getting little computer time.

Elliott and School

Elliott will start kindergarten tomorrow. I don't know if I am sad that he is growing up but perhaps I'll feel it tomorrow after I drop him at his first day of school. This photo was taken on July 24 in front of our house. We planted sunflowers, zinnias, coreopsis and alyssum in this little plot. Some of the flowers have special meaning to us. The sunflowers really took off and towered above Elliott's 45" frame. Perhaps they are metaphors for what is to come. He will grow quicker than we are ready for, shine his golden smile on all of us, and share his joy with all those who care to join him.

Thursday, July 26, 2007

How Lucky We Are

Last night I held poor Beth while she cried from teething pain. I lamented about how tired I was and the sleep I was missing but then the warmth of her body calmed me down and made me feel so lucky. She sucked on her thumb while I snuggled into her soft hair, smelling that pure clean that only babies have. I thought back to the days in the NICU when we couldn't hold her and feared she wouldn't survive. I thought back to the stories I read from the 100+ moms in my Preemie Mom's group. Many of these mom's can't feed their babies because of oral aversions. Some children have cerebral palsy. Some children are deaf or have paralyzed vocal chords from the PDA ligation.

Some of these precious preemies didn't survive. Sadly while we did lose one of our little girls, Beth did survive and she is so healthy. So many things could have gone wrong but didn't. Aside from her diminutive size, Beth is the healthiest baby you'd ever meet. She is smart, opinionated, joyful, playful, demanding, loving...the list goes on and on...

That's the beauty of it. The list DOES go on and on and we are privileged to know each component of her personality and physical well-being. I don't know why God let us be the lucky ones but even with our losses, I do feel we have some good luck to have such joy with Beth and Elliott -- even sans sleep.

Wednesday, July 18, 2007

Just Pictures

These were taken by my sister-in-law, Cathie. She has developed a great talent for taking photos and especially for editing them. Beth is cute anyway but these are precious.

All is well here except that Beth is glued -- I mean GLUED -- to my leg all day, everyday. I am trying not to complain but sometimes I'd just like to go to the bathroom without her wailing at me to pick her up! ... just rememeber all those days I couldn't pick her up...

Wednesday, July 11, 2007

Video of Playing on the Beach

This is a video of Beth and Elliott playing on Seabright Beach on a glorious sunny day. Some notables about Beth: she is now 17 pounds and 2 ounces and has just turned 17 months old. She has eight teeth. She loves to eat and really has taken a liking to any kind of meat (unlike her brother). She usually sleeps through the night except, of course, during our vacation. Elliott can make her laugh like no one else. She can say doggie (any four-legged creature with hair), cookie (actually "ca-ca"), mama, dada, uh-oh, and is trying to say "Elliott" (more like "eyyott"). She is horribly mischievous and loves to throw food off her tray when she is finished eating. If she can tell you don't want her to do something, she stares you in the eye, grins and keeps right on doing it! We are thrilled with her spirit (probably saved her life).

Monday, July 09, 2007

Vacation in Santa Cruz

We all went to Santa Cruz with Gramma over the Fourth of July holiday week. We are feeling a strong need to be together with our family these days as we try to recover from losing Barry a few weeks ago. A week together on the coast was nice but not without its own trials.

Beth still has ear infections so she was cranky the entire week. I was bit by a wasp on Tuesday and after a nasty bout of hives (and almost a trip to the ER), spent two days nursing a badly swollen leg and foot. Don't even ask me about the drive home on Saturday.

Our biggest adventure during the week was the complete anarchy that descended upon Santa Cruz on the 4th of July. We had no idea this was going to happen...If you want to see something spectacular, visit SC on the 4th. Fireworks are outlawed but this doesn't stop anyone. And, the fireworks set off are not just the typical purchase from the neighborhood Boy Scouts. People park their boats off the shore and launch professional-style pyrotechnics from yards, boats, guns, sand...for nearly three hours, we saw and heard 30-50 fireworks going off every minute in an incredible -- albeit unchoreographed -- aerial show. These were the same kind of fireworks you see launched in your hometown extravaganza. In our town of Folsom, they say a 15-minute show costs $50,000. If I had to estimate how much was blown off in Santa Cruz that night, I'd say a $1 million worth of fireworks studded the sky that night. For the first 30 minutes it was fun. After that we began to worry that the next one would be launched into our cottage or blast off a neighbors rooftop.

Tuesday, June 19, 2007

No more Reflux

I don't have much heart to write posts right now. But we do have good news that Beth's bladder reflux has resolved itself on its own. She is now free from antibiotics and we don't need to fear that any UTI could be dangerous. She is walking pretty much on her own now.

Please say a prayer for Barry's wife and two children, Nicole and Christopher.

Friday, June 08, 2007

My Beloved Brother, Barry

At 4:00 this morning, my beloved brother died. He had a massive stroke on Tuesday afternoon and his body and brain could not take the trauma and he finally succombed. We know not why such a horrible thing would happen to him.

Barry had a beautiful wife, Cathie, and two children, Christopher and Nicole. Barry loved all things in the wild. His family brought him immense joy. He filled a room with his spirit whenever he was around. My pain is so great that it seems that if I breathe too deeply, I will suffocate in the void that now exists on this earth.

Below are photos of Barry's generous love with his children and mine. God now has him and I know that our baby girl, Julianne, is happiliy nestled in his strong chest. I am so comforted knowing that he is caring for her in Heaven and when are all together, she will be as beautiful and wonderful as his children are here on earth.

I love you, Barry. Mike loves you. My children love and adore you. We will honor your spirit by taking care of your family.

Cathie and Kathie

Saturday, June 02, 2007

More Steps - Cystogram Status

Beth took about 5 steps by herself on June 1 so we are counting that as walking. She was completely balanced and slowly walked between Daddy and I so she could show us a toy she was holding. What a grin she had! She can stand a pivot a bit and it totally comfortable "cruising" from table to couch and along the walls. In the next few days I expect she will stroll across the room! She is so very proud of herself and so are we. Given that this happened just before her development clinic appointment, I think we'll rest much easier.

Nuclear Cystogram
The dreaded exam was on Friday (the same day she walked so I guess she forgave me for holding her down)... They had bumped the appointment to 12:30 and required that she not eat so she could be sedated. In my last post, I wrote that they gave in and agreed NOT to sedate her. We would be taking our chances that the images would be good enough but for the short story, they were just fine.

It was a little painful for her when the catheter was inserted and her bladder filled to capacity. I had to hold her hands and shoulders down for about 10 minute during this process. Another technician held her legs up and away from the catheter while they took images of the contrast going in and then going out.

A doctor is supposed to call in the next few days to tell us the results but I did take a set of films home with me. Now, I could be wrong but I think the films are telling us she still has bladder reflux. They show the volume of fluid in and then the among discharged with a final number of retained fluid. Beth retained about 15% of the fluid that was infused into her bladder. To me that says she isn't voiding completely and so we still have to keep her on antibiotics and repeat this test in a year.

Let's see what the urologist tells me on the 14th. Another doctor might call me before that time to tell me the test results at which point I will relay the information.

It was very difficult to see Beth crying and upset again. She communicates more clearly every day now and I could read her eyes and voice to know that she really wanted me to make it stop. She was doing her best, alternately sucking on her thumb and wringing the heck out of her blanket. I could just barely reach her as I leaned over the scanning table and I held my forehead and mouth against her forehead, humming and singing in any comforting way. For a few seconds I managed to stop her crying while making goofy faces and clicking my tongue but for the most part, she wasn't happy. The radiologists didn't let me nurse her beforehand as I had planned on doing with the attending nurse. She was tired, hungry, uncomfortable and a more than a bit ticked off. Yet bless her heart, she forgave us immediately and I whisked her off to a private room where she nursed and passed out.

I could have used a comforting breast myself (har har) but had to settle for a quiet car ride home and a few minutes to calm down before picking up Elliott from school.

For any mom taking their child to a nuclear cystogram test, I would say it was about 50% less horrible than I expected but unnerving none-the-less. I am very glad we did not sedate her because going without food for 8 hours would have prolonged the stress. With some caring hands and the knowledge that her mommy was with her, I think Beth knew it would be alright it would just take a few minutes to end.

Thursday, May 31, 2007

One Down, Three More to Go

We have completed one of our tests for the week. Today was the renal ultrasound exam. At first I was anxious about this because one of the scheduling nurses (or perhaps it was an assistant), said it was like a colonoscopy. YIKES! Given this information I grilled the ultrasound tech last week trying to find out what I should be concerned about and how we could minimize stress on Beth. Halfway through our conversation she finally said, "we are just putting a probe on her belly," (or something like that).

Okay, so that test was easy. It was supposed to happen yesterday but the scheduling nurse (was it the same one who told me it was like a colonoscopy) sent me a form saying the exam was taking place in the WRONG location. Needless to say, we had to reschedule and they had a slot this afternoon. So Beth squirmed a lot when they contrast gel was squirted on her sides and belly but she was generally complacent about the whole thing.

The anxiety this morning started when the scheduling folks for her Cystogram (happening tomorrow) called to change her appointment. She was orginally scheduled for a 9:00 a.m. exam and we were to arrive at 8:00. Given that she would be under conscious sedation, she was not supposed to eat for 8 hours prior to the exam. I was willing to go with this but then the call this morning changed the appointment to 12:30 p.m. I could not imagine keeping Beth from eating through this long morning time so again I took to the phones (I think the good people at Sutter Memorial hate me by now).

I pestered the scheduler to find out why the appointment changed. She told me the doctor had a surgery come up. I asked to speak to a nurse about the 8-hour food ban. By the time I did catch someone (thankfully a helpful guy named Steve who spoke with me last week), I was even more adamant that this schedule wouldn't work. We discussed the pros and cons of the Versed they prescribed for sedation and I told him that this is Beth's normal nap time and she would be quite close to passing out at Noon.

Steve agreed it was worth a try and kindly spoke with the doctor and an anesthesiologist who subsequently agreed to try the exam without sedation! This has been my aim all along because I hate the idea of sedating her. If I can get her sleepy and relaxed in a dark quiet exam room, we just might have better luck keeping her still. Granted she will be a little peeved by being catheterized but she'll get over that once I nurse her.

So tomorrow we get the cystogram and I don't have to worry about starving our little girl. And, if you saw her appetite during the last few weeks, you would agree that my concerns are valid!

More tomorrow.

Wednesday, May 23, 2007

Bladder Reflux Tests

We have a series of doctor appointments coming up for Beth and Elliott. We suspect that Elliott gets migraine headaches. My sister and I get them, my father gets them and my sister's youngest son gets them, too. Given our family history this might explain why Elliott sometimes has unexplained episodes of vomiting and headaches. Now that Beth is stable, it seemed a good time to pursue this affliction for poor Elliott. We feel badly that we have waited so long to pursue this but thankfully these episodes are far a few between; they happen on trips to altitude (like we've had time to go skiing these last two years...) or when he spends too much time in a stressful situation.

So Elliott sees the neurologist on June 5 and Beth has four appointments between now and June 6. Beth with have a renal ultrasound on May 30. At first I was told this was like a colonoscopy but then after hounding the poor technician with questions, she said, " it's not like we are going inside or anything." That changed the picture. Now I know it is just an abdominal ultrasound so that will be a piece of cake. Her appointment on June 1st, however might be difficult.

On June 1 she will have a nuclear cystogram to check the status of her bladder reflux. (more detail about the condition and tests)

She will be given Versed which is a drug for conscious sedation. This keeps her awake but rather loopy. I am not looking forward to this. If Mike and I remember correctly, this is the drug they gave Elliott the first time he had ear tubes placed and he awoke from anesthesia in a delirium. It took two of us to hold him down for an hour until he regained his bearings. He would have hurt himself if we didn't immobilize him with force and that was not something I want to experience again. Needless to say, we are highly anxious about this test for Beth.

They will insert a catheter through her urethra (or is it the ureter??) to her bladder where a small balloon will be inflated to keep the catheter in place. Then they insert a radioactive dye and take pictures as she voids. Apparently this test exposes her to less radiation than the VCUG did (voiding cystourethrogram) that she had when she was first diagnosed in June 2006.

After this test we have a follow up with the urologist to consider treatment or to hopefully close this chapter if she has grown out of the defect.

On June 6 we meet with the developmental specialist. I was first inclined to cancel this appointment because Beth is doing so well. But given that she still isn't walking entirely by herself and she has such a funny crawl, it might be a good idea to have a few other development tests to make sure something isn't amiss. I think she just is going her "own way" as she has from the point of conception. Won't hurt to get a professional's opinion and the development specialist from the Mercy San Juan NICU is such a sweetheart. She will enjoy seeing Beth and we will enjoy seeing her.

Enjoy these photos. The handsome grey-haired guy is my oldest brother Barry. You can clearly see how much we look alike. The other photos are of our recent trip to Monterey where Mike ran the very difficult Big Sur Marathon in just over 3 hours.

Thursday, May 17, 2007

Ah, Sleep!

Finally! One night of sleep! Beth made it from 9 p.m to 6:30 a.m. last night. Of course she had a few peeps during the night but I was so happy to stay in bed for 8 hours. She is going through a growth spurt and wants to eat everything in sight. Here is a check list of her recent "acquisitions" and my impression of her likes/dislikes:
French toast - "Eck, it is sticky."
Potato Bread - "A little gummy mom, but if you scrape it off the roof of my mouth, it's pretty good."
Bananas - "still no way I'm going to eat those mashed or otherwise."
Cheese - "too bland"
Pretzels - "The food of gods (or goddesses for that matter)"
Quesadilla - "Right on!"
Spagetti-o's - "You must be kidding."

Tuesday, May 08, 2007

Bethday Party Photos

We had a wonderful time at Beth's special party. Beth is doing just fine and took her last dose of antibiotics for the intestinal infection on Sunday (the day of the party). Here are a few photos taken by my sister-in-law who is becoming the de facto photographer of family events. Thanks Cathie!
Obviously most of these are of Beth and me in the play pool. The two little boys are Elliott and his red-headed cousin, Giacomo, who must have been admiring Elliott's muscles!
Nana and Grandpa came up from Arizona and were treated to watching Beth take her first solo steps. She has only made about 3-4 steps on her own but they were proud. In fact, they could be the primary reason she took these steps. They worked with her while Daddy and I were away for a few hours and when we returned, she had a new trick!