Jan 30, 2010

Processing

Since the news of baby's tumor called a Saccrococcygeal tumor or an SCT, I have learned much more and have been slowly processing the news. I have been through many up and down swings. This tumor is extremely serious, and yet at the same time, prognosis after birth is good.

The good news is that, unlike spina bifida which we were first told, baby should not have any long term affects after she is born. A simple scar will be all that remains.
The tough and fearful part will be getting her born.

Though rare, this tumor is the most common type of tumor affecting babies, 1 in 40,000 are born with it, and 80% of them are girls. It grows off the bottom of the tailbone. It is thought to be caused by rogue cells which are not told what to develop when the neural tube seals in the first couple weeks of development. The good news is, in girls, it's usually benign. In boys, it's often malignant. She will need to be regularly checked for more tumors though in the next 3 years after birth. The tailbone will also have to be removed to ensure that it does not return.


There are a couple of factors that will dictate just how tough helping her have a good chance will be. The first is whether the tumor is mostly cystic or whether it's solid/vascular. We already know that it is very large and will grow quite a bit larger. A cystic tumor is mostly fluid, but a vascular tumor is solid and full of blood vessels which will overtax her little heart which could be pumping enough blood for two babies. If this happens, she will need to be delivered immediately. The other concern is hydrops, which is fluid around organs, such as the brain or heart, when baby is under stress. This can develop very quickly and is quickly fatal without immediate intervention. However, at this point, we don't know what kind of tumor is growing.

The other factor is how external or internal the tumor is. If it's completely external, she has a better odds of no long term affects on her lungs, kidneys, or bladder, and the surgery will go much smoother. If it's partly internal, surgery will be much more difficult. So far they said her internal organs looked good, but they weren't able to get a clear shot on how it was attached in the ultrasound.

I have already been told that she will be spending some time in the NICU when she is born and that of course she will be getting immediate surgery. How much time will depend on the complexity of the surgery and how early she is. In delivery, keeping the tumor from hemorrhaging will be a concern as well.

I have been told it's very likely that she will be born early. Their goal is to get her to 34 or 36 weeks so her organs and lungs are better developed. That would be the end of April. Depending on what we find out in the next ultrasound, hopefully, we'll know better how likely this will be. I am 20.5 weeks right now. That's 14 more weeks to stay positive and hope for the best. I count the days until the next ultrasound which is scheduled in 2 and a half more weeks. We are praying it is mostly cystic, that it grows slowly, and that it is external.

For me the risks are the same as a twin pregnancy. Specifically, preterm labor and excess amniotic fluid due to the expanding tumor can become possible concerns.

At this point, I have read too many stats. Pretty dire ones. I skip over those websites and move on to ones that can just give me good facts. Because my little girl is not a stat. She's a person, and we have a lot of hope and positive thoughts for her. I believe we will get through this and this time next year, she'll won't have a memory of it, and will be a crawling, laughing, happy girl with a big brother and sister to dote on her.

Tone has not been home since Wednesday. I have been to the ultrasound and talked to the doctors alone, and I just can't wait until he gets home today. When you are in shock and first hearing the news, it's hard to take it all in, process it, and then relay it over and over to many people who have more questions than you thought to ask the doctor.

Right now I feel an immediacy on her name. With Tone gone, we haven't been able to work on that, and I am so frustrated. A name would dignify her as a person and give her a place of significance which I so badly need right now. She is so very special to me.

I know we are bathed in much prayer, and it's means everything to us. It's going to continue to mean everything to us until our little girl is born, healed, and home. We know our God sustains and loves our little girl even more than we do. We trust Him fully in all decisions which will affect her. I am praying that I stay positive and can just let go of my worries and focus on His strength and love in the coming weeks as we count the days down towards a safe arrival.

Jan 28, 2010

The Results for now.....

So I just got back from my ultrasound....the second one in two days. Here is my GIRL sucking her on her fist. Yes, a girl was confirmed for sure this time. And she decided to suck on her fists during the ultrasound. So cute. This little girl does not have Spina Bifida. She has a very large teratoma growing off of the base of her spine. A teratoma is a large, benign tumor or cyst that grows when cells go rogue in the development process. It can have possible tissue, organ or bone components. Baby girl is about 7 or 8 inches long right now from head to tushy. The teratoma right now is about 3-4 cm long or around an inch and a half. That's quite large in perspective. So what does this mean for her?

Actually, it's quite good. She'll need immediate surgery when born to remove it, but aside from a large scar, it will not affect her in any way. During pregnancy though, there is always the chance that the teratoma can start to take over and steal blood from her. In this case, they will need to deliver immediately. Therefore, I am now in a high risk pregnancy. I will be taking steriods to develop her lungs quicker should they need to deliver early, and I will have ultrasounds every 2 to 3 weeks. We are going to get to know her quite well before she is born!

We have no idea right now how serious the surgery will be or even where I will deliver her. It's very likely that she might spend some time in the NICU at Children's hospital. I am going to have a flurry of appointments between my doctor, the ultrasound professional, the surgeon, and hospitals.

What can I say? Relief and greatfulness that she won't be crippled with Spina Bifida. That this is the best case prognosis for what they had seen on the ultrasound. I think the hardest part for me was just not knowing. I needed to know if she had spina bifida so my brain could move on from there. I knew my faith will carry me the rest of the way, and God will support me. Right now I just feel so relieved and thankful. And in the last two days, I have become so happy and excited to meet my little GIRL. Ainsley will love having a sister, just as I loved having mine.

Here are two good links for finding out more clearly what little girl has:
http://www.childrenshospital.org/az/Site1536/mainpageS1536P0.html

http://fetus.ucsfmedicalcenter.org/sct/learn_more.asp

Especially watch the videos on the second one. I think it makes it the most clear.

Jan 27, 2010

Ultrasound findings

So here it is. Cute little profile of our baby. I had my ultrasound yesterday.

You know after having my son, I go to ultrasounds with a great deal of excitement and a small part trepidation. I had a lot of ultrasounds with Hunter because they were monitoring an irregular heartbeat that he had. It turned out to be nothing when he was born. However, you don't forget that nervousness and fear when you go in for the next one. Of course the overriding feeling is of excitement because you get to see your baby's face, little hands, little wriggles and movements. It's instant affection and love. I was hoping to find out if it was a boy or girl. FAIL. This little one was too shy. The ultrasound tech thought maybe a girl, but got another tech who couldn't tell either. So I got a "maybe" which is really a "nothing". I just wasn't prepared for that. I have about 8 friends who are pregnant right now and they all know for sure. Not that I need to be like them, but I was disappointed and a bit surprised that they couldn't tell me.

Now I really wanted a boy, so I am laying there and feeling lame for even feeling a letdown when I was told girl. I mean, any child is a wonderful gift from God. But I felt letdown just the same. I was a little depressed walking out of the office.

Today reality jerked and became a different reality for me. The doctor called.

There looks as if there is the possibility of fluid around the spine. She highly recommended I go in tomorrow for a blood test and get another ultrasound in the next week. I was having trouble with tears crowding my voice when I asked her what were the indications of this news. The blood test is to see if it correlates with the ultrasound. They are specifically looking for spina bifida.

Many thoughts cross your brain: This is routine right? It'll be just like Hunter. I bet a lot of people go through this only to have a healthy baby. Did I do something wrong? What if it was because I was too sick to take my prenatal vitamins because they made me throw up? But I ate a salad and healthy food every day to make up for it because I know that I needed the folic acid in the leafy greens. Odds say 7 out of 10 neural defects could have been solved by taking more folic acid? Of course it's not my fault, these things happen. I could be in the 30 percent. Maybe they can see if it's a boy or girl next time. How can I even think about it's gender when there are greater things at stake? Why was I not just happy it was healthy? Am I a shallow parent? How will I handle a child with spina bifida? It doesn't matter, I saw this child and it makes no difference in how much I love it to me. But really? How will I handle a child with spina bifida?

Moments of fear and tears are followed in the next second by calm and confidence, only to feel tears again a little while later. Thoughts go round and round. One thing that never changes is how much I fiercely love this child and know I am fortunate to have been given this gift.

You know, my God is good. My God is great. The results do not diminish His goodness or greatness. I do feel a great sense of calm in the middle of tears knowing this. I know that in the middle of life as I am daily confronted by the "wreck of me" and my struggles, successes and failings, He is the gracious and constant one. He cannot continue to be but the same.
I live in the mantra of "worry doesn't empy tomorrow of it's sorrows, it empties today of it's strength" - Corrie Ten Boom. I have it posted in many places in my home. Not because I do it so well. Rather, I do this so poorly I need the daily reminder. The reminder that God is my continual source of strength. My ever present help in times of trouble.

So in the next week, I'll get my blood test results back and a new ultrasound to see how much fluid is there. Should there be high markers in my blood and high indicators in the ultrasound of problems, then I will be closely monitored and baby will have a special doctor and hospital. I'll keep you all posted.....

Jan 21, 2010

Rain, rain, go away....


I'm a summer kind of girl. I'm rather attached to my flip flops. I want to see flowers in my garden again. I took this flower picture this fall in September. This same plant is now a drippy, grey mess of twigs which I need to prune back to the ground in preparation for spring. I would have done it this week if it hadn't of rained...all..week...long. It's too wet to do anything except sit in the house and watch the rain drip down the windows. You can tell me all about how California has been in a drought this summer and the rain is much needed...but the rain always makes me feel dreary and lazy.

In other strange news, Tone and I noticed around New Years that my spring bulbs were already starting to pop out of the ground. They have never come up before March before or at the earliest late February. And it's all of them. All of my different varieties of bulbs and flowers. Huh? I hope we don't have a frost that kills them because they popped up 2 months too early.

I have an ultrasound coming up on Tuesday. The fun one where you might get to see if there's a boy or girl in there. I guess boy, but I'll let you know. I love the second trimester. I no longer feel sick, I don't feel big and bulky yet, and the baby is making itself known with little squirms and kicks. Most of my low rise jeans are still fitting thank goodness, and so I'm still wearing my favorite pairs of pants. Woo Hoo!

I'm sorry this might be a somewhat boring post, but because of the rain, I haven't gotten any good photos this week. There just isn't enough light for the camera, and I hate flash photography. I do want to get a light scoop which could solve this for me. In fact I am drooling over it. Photography is becoming a very expensive hobby!

Jan 15, 2010

Our trip to Antartica (Missouri) and back

As I mentioned in my last blog post, we traveled to Missouri last week, so see Tone's parents and sister's family. Apparently it was not the week to be there. Every night the news reported record lows for the area, and it never got above 10 degrees. Just getting out there was a nightmare.

Here I am with one double stroller, two backpacks, two car seats, and one very very large rolling suitcase (it's a juggling act to be sure and quite a sight to behold). Pregnant. Two children. Alone.

My first flight out of Fresno to Denver was canceled due to fog. It was really handy of them to tell us that AFTER the time it was supposed to leave. So I got up at 3:30 am, got to the airport, got through the longest check-in line in the face of the planet, sat around until 6 am only to find out flights there for the day were, for the most part, canceled. Oh, did I forget to mention that Tone was stuck in San Francisco because his flight didn't get in the night before because of that same fog? So he slept on a couch in the crew room of the San Francisco airport for a couple hours because he couldn't get home to help me. Yes, I am alone. Pregnant. With two little kids. Lovely. Tone did not know our flight was canceled until he was already on his airplane from San Francisco to Denver and waiting to take off. Yes, we were supposed to meet up in Denver getting in at the same time. Fail.

So plan B: i.e. drive to San Francisco, 3 hours away. So...I run back downstairs, and go through a whole fiasco to get my bags back so I can be on my way in the car. If I don't hurry, I'll miss the flight in San Francisco. 20 minutes later, I have my bags, do the whole juggling act again to get to the car, load the car, get gas, and drive like a maniac to San Francisco to get to the airport in time. Now this is a fun part. Hunter gets car sick in major traffic going over the San Mateo bridge. Umm, you can't exactly pull over there with no shoulder and a huge bridge going over the bay. So we do a lot a driving with the back window down smelling all those car fumes from the 8 lanes of traffic around us.

Now, we have to park at the Embassy Sweets Hotel because that's where they have the pilots stay on their overnights in San Francisco and that equals FREE parking. Totally worth it. Parking is free, but we have to catch a shuttle to the airport. I arrive at the hotel to see the shuttle parked out front. So I park, jam the kids into the stroller, grab the bags, run to the lobby, only to see the shuttle driving away. So another 20 minute waiting for the next shuttle.....

Did I mention I am pregnant? With two little kids. Alone.

Anyways, I finally make it to the airport, check bags again, rush to the gate just in the knick of time....only to find...the flight is delayed. Wait an hour...only to discover...THAT flight is now canceled too.

I find out there's another flight to Denver leaving at a nearby gate. But because they dawdled around figuring out if they could put passengers from the canceled flight on the plane, they don't have time to process me, and that flight leaves without me. And with empty seats where I could have sat.

Tone calls. Here's where having access to inside information is great (pilots have access to the website that gives all the information on flights that they don't ever tell you).

There's another flight to Denver leaving in a half hour. It's not on the board and I can't find the gate. Finally, I figure it out, and realize it's a new flight they just made up to be filled with passengers from other canceled flights in the airport. I wait and wait and wait to see if they'll let me on, and manage to snag the last three seats. In first class no less. Is something finally going me way!?

It's 3:00pm by now, and Ainsley has had it. But does she sleep? No. For the next 2 hours on the flight she throws a complete fit. In first class. I am hated by all around me. She falls asleep finally right as the plane is landing and I have to wake her up.

Did I mention I am pregnant? With two little kids? Alone.

Never did I feel such relief when I walk off the plane and see Tone standing there waiting for me at the gate. Mind you, he has been waiting for us since 8:00am when his flight DID arrive in Denver. It is now 6:00pm. He's still in his uniform from the day before, unshowered, bored out of his mind, and looking beautiful to me.

Well, our next flight to Springfield, Missouri, doesn't leave until 8 pm, so we have two hours to wait. With two grumpy kids. We went to the highly overpriced airport McDonalds. Desperate times ya know?

We get on the flight to Springfield, and arrive at 10 pm to see Tone's parents waiting for us. Oh happy day! But we still have an hour drive to get to their house. We walk outside to 10 degree frigid cold and see....they brought their tiny little car. At this point not only do we have the baggage I have mentioned before, but we have added Tone's baggage, which is a laptop, flight bag, and small suitcase. Visions of clowns in tiny little cars were flashing through my head. We manage to jam everything in it with the kids feet propped up on suitcases in front of them. Jam the kids and one adult in the back, and three adults on the small front seat in the front shoulder to shoulder, and drive on curvy, curvy roads for an hour. I am in the backseat, sleep deprived, and feeling very sick at this point. Needless to say, though Mom and Dad were so happy to see us, and us them, they wanted to socialize for a while before bed, and I had to pass. Sorry guys. We'll catch up in the morning.

Morning dawned bright, early and cold. Though the kids were up, Tone and I were....not. Sleep, blessed sleep, claimed us while the grandparents enjoyed the kiddos. Hunter and Grandpa rode snowmobiles in the fresh snow that had fallen the day before. Ainsley bundled up and played in the gorgeous cabin playhouse that Grandpa made for his grandkids, complete with a porch swing and split log furniture.We were certainly kept busy even though it never got above 10 the whole week. Record temps were set, schools were kept closed, and the snow never melted. One night our pipes froze, but Grandpa managed to unfreeze them and get us water. No matter. Grandpa has a tractor. Hunter thought this was so fun! He got to work the front bucket and the back one with grandpa's help.

Every boy's dream!


No rest for the weary. On Wednesday, we drove 3 hours to see Tone's sister, Shari, who was getting back surgery that morning. The three cousins got a snow day from school (they got a whole bunch of snow that day, so the kids spent all Thursday playing together). Shari's surgery was a success, and the kids got to enjoy being a family together. Grandpa decided to do a two hour trek in the snow looking for icicles. Mom, Shari, and I passed and stayed at home catching up while the dads and grandpa took the kids. From the looks of the pictures, they had a blast and accomplished their goal. This one's as big as Ainsley!
All in all we had a great time despite the cold. We were treated to a restaurant in Arkansas that played bluegrass music while you ate. Just a local place with local cooking, and jokes thrown all around in Southern twang and redneck style. Ainsley bee bopped to it the whole time. Wish I would have gotten a picture.
Another good memory is one of Aubrey and Ainsley. I put the kids to sleep that night in their cousin's room, and I found Ainsley and Aubrey curled up on the floor around each other fast asleep. A book was above their heads because they had fallen asleep reading to each other. It was too dark to get a picture, but that's a memory I'll carry forever.
The kids got so much Christmas toys from the grandparents, we had to add a whole big box to our luggage to cart it home in. Shockingly, they managed to fit it in the teeny tiny car on the way back to the airport. The trip home was uneventful with two flawless flights from Springfield to Denver to San Francisco.
Hunter misses his grandparents and tells me everyday this week that he wishes he was there again. It might be something to do with the fact they got him cowboy boots and a fake rifle for Christmas. I don't know....just guessing. All I know is, he hasn't taken them off, except to sleep, in the week since.

Jan 3, 2010

i heart faces!

I love and follow this site! I've been loving them for quite a while now, and they are having a logo contest, so here is my entry. I really do heart faces, as faces in photography are the best object to capture ever! There were already holes in this leaf my daughter is holding up, so I thought, why not make them bigger! And since this is "all about faces" why not make the picture closer? So here she is cropped even closer around the face for ya!
You can link to the blog on the button below to see more wonderful faces:


I am submitting this photo into the I Heart Faces logo photo contest. By entering, I am granting I Heart Faces LLC permission to consider my photo for use in the marketing and promotion of their website.

Jan 2, 2010

Quick Sew-in Labels Tutorial

Holidays are over, the house is cleaned up, and it's back to work for me! I realized I was out of label tags for the bottom of my shoes, and I thought since I am making more, why not make a tutorial out of it! They are so quick and easy to make, and make my shoes look so much more professional, that I thought someone else might benefit from this.

You will need some easy supplies: An iron, fabric (color fast works best), your computer/printer, and Heat and Bond Iron on Adhesive.

First you need to cut out a rectangle of Heat and Bond so that it is the exact size of a piece of paper. Then iron it to your fabric. Cut the fabric out around the edges.

*A tip: I don't use Pellon fusing because it is a real pain to peel off the backing and doesn't seem to stick as well. Heat and Bond is far stiffer and seals to the fabric better.

Here is a photo of the Heat and Bond ironed to the fabric:
Here is an example of the type of fabric you can buy at Joanns or other fabric stores. The ink doesn't run in the wash. There are other brands out there as well, so look around. You will notice that since my shoes are handwash only, I don't worry about this. I like the look of antique white instead of stark white, so I print on regular dyed fabric. But if you were putting this on a dress which will be washed a lot, I recommend colorfast. I tea dye mine first so that it's not so stark white.Now you'll go to your computer and make labels on Word. My label page looks like this:If you are wondering how I got the little frame around it, I made a little logo in photoshop, saved it as a photo, and then imported and resized it in Word. I made my labels small, so columns of four seemed to work well for me. Then I simply took my fabric/Heat and Bond fused sheet and ran it through my printer. Make sure it doesn't catch because it's stiff but not as flat as a regular piece of paper (the edges tend to curl up after ironing). You should have something that looks like this after printing:Simply cut your strips apart. I toss mine in a little bin so they are ready to grab and iron on as I'm sewing my shoes:And the finished product (or one of them). Much more professional right? If you are sewing a garment, I recommend sewing around the edges so that they don't peel up in the wash. I find that for me though, Heat and Bond sticks extremely well to my felt soles, and doesn't peel up at all. It does however, peel up more on regular cotton, and so sewing is needed. That's it. My labels are done. It took only about 15 minutes since my Word doc has already been made, and now I need to go back to sewing those shoes!