The trip up was fine yesterday…I had a lot of spasms in my lower back and abdominal cramping so we had to stop a lot and let me walk and stretch (Mom’s car is TINY), but we still made it in about 8 hours total, which wasn’t bad at all. Everything went great…no rain (the rain hit behind us though, so it was a good thing we left early), easy traffic, easy finding the hotel (thanks to Justin’s GPS lol). The hotel is cheap but clean, and seems to be in a relatively good area (minus the adult video, book, and novelty stores all around us…ack!)

Anyway, I was relaxing here last night…I have appointments scheduled (and confirmed by phone yesterday) for 12:30 for fetal echocardiogram, and 1:00 with the high risk OB. When I asked if I would be seeing the heart surgeon who called me (I asked this on Tuesday) I was told he’s “out of the country still I think.” I figured maybe he was lucky and got to go to the Olympics. Well, Last night, I got another appointment confirmation call (too late to call during business hours) and it was for 2:00 at the pediatric cardiac surgical unit. Now, 30 minutes isn’t enough time to get seen on the 4th floor and fly up to the 5th floor. I tried to call this morning…waiting for a call-back now to see what they can do. To me, it’d make sense for those two appointments to be combined since both departments will be involved with our care.

Anyway, I’m nervous but a little hopeful about this development. Bear with me, I tend to analyze and overthink everything lol. I don’t know if my surgeon came back into town, and found out I was going to be here (the two departments have been having constant communication back and forth about me I was told), or if he assigned one of his other surgeons to evaluate me and report to him when he gets back. Either way, its cool that they jumped on it and worked us in. I’m hoping when we leave the hospital today, we’ll have a REAL good idea of what will happen.

I don’t sleep well the night before travel, and don’t sleep well in hotels, and don’t sleep well the night before a big appointment. I didn’t sleep much at all Tuesday night, and managed to stay awake the entire trip up (I usually fall asleep as soon as I get into a moving vehicle lately lol). Last night, I slept, and slept HARD. I fell asleep while I was PRAYING. I never do that! Anyway, I got a good night’s sleep, and got to sleep a little late this morning.

So, all is well so far, haven’t actually been to the hospital but I’m really hopeful. I know I’m rambling…its nerves this time though lol. Just keep us in prayers today please…I’ll update whenever I can get back to an internet connection after we’re done today.

Thanks!

We just came out of Birmingham, AL.  I’m using Justin’s work laptop and wireless card (shhh, don’t tell NASA!) because his new card doesn’t fit my laptop’s PCMCIA slot (mumble grumble).  So, no playing World of Warcraft while traveling for me *sniffle*

Just wanted to update that we’re on the road, almost halfway there, and so far the trip has been uneventful.  Uneventful = good

My back is having some bad pain and spasms, but short stops and stretches help with that.  We’re in Mom’s little Chevy Aveo (tiny, subcompact)…I think I posted about that yesterday.

Anyway, my appointments will be done by 3 or so tomorrow hopefully, so I’ll be able to post what we find out.  Hopefully we actually find something out and I don’t have to go home and wait for results!

Keep us in thoughts and prayers for a safe trip…thanks!

So I’m posting, even though there’s nothing really to post about much, because if I don’t, I expect I’ll be getting phone calls and emails again asking if I’m ok

Actually I guess I do have a little to post about today.  I’m still sore from the root canal, although it went perfectly Thursday.  I guess this is residual pain from all the shots of novacaine, although the tooth itself is still a little sensitive to pressure, but not enough to prevent me from eating.  It just hurts to open my mouth to eat or talk still, which makes me think that’s from all the shots.

Justin and I are leaving bright and early tomorrow morning for Vanderbilt.  Ronald McDonald House couldn’t fit us in (although they told us to call again today and tomorrow) so we had to book a hotel.  We didn’t want to, its so expensive, and if we don’t cancel by noon today, we have to pay one night’s stay as a cancellation fee, so if RMH can’t give us a definite answer before noon today, we’ll just stay in the hotel.  Thankfully gas prices have gone down, and a donation was made to our paypal account that will help us with food for one day, maybe more (thanks Tricia!).  My van is acting up, so my mom is loaning us her little Chevy Aveo, tiny little subcompact car, that cramps us both up to drive far, but it gets about 15mpg better than my van does so that’s an added advantage, and its new so we won’t have to worry about mechanical problems on the road God willing.  The problem with my van?  We paid it off two weeks ago LOL.  So of course the engine is missing now.  Missing as in the timing is off…not missing as in not there

I’m very very anxious about Wednesday.  Our anniversary is Sunday, so we’re treating this as a little anniversary get-away, in hopes of enjoying ourselves and not stressing too much.  But the truth is, either we’re going to be really happy Wednesday evening, or its going to be one horrible ride home Thursday.  I’m so terrified.  This is what I’ve fought for…what I’ve researched and agonized over and fought with the doctors here and Justin on, and its all going to be…well, not over, but more definite Wednesday.

Just please keep us in prayer.  I’m trying to remember to pray “Thy will, not my will,” but its so hard to remember.  Its so hard not to say “But God, if you could JUST….” and insert my wishes and desires.  He knows my wishes and desires…and like Bekah said, He answers every prayer…its just sometimes the answer is “no.”

Still, his timing has been impeccable…everything we’ve needed has fallen right into place so far, even some things we haven’t needed but thought were luxuries (my chiropractic and physical therapy for instance).  So we’re just holding out faith that things will be as they should and trying to prepare ourselves to accept whatever happens.  For the truth of the matter is, even if she’s a candidate for whatever treatment options are available, that’s the easy part.  The hard part is going to be the long days and nights in NICU and PICU and the worrying and praying that will be going on.  We need strength for all of it.

So, I did have something to write about :)  Supposedly we’ll have internet access in the hotel (RMH definitely has it, but we don’t know if we’ll be staying there or not).  We’ll have Justin’s wireless card he uses for work, but when we’re not on the road and seeing doctors, he’ll be using it to actually work from Nashville.  His bosses are being SO excellent with this…they’re letting him do all his work from the road and not claim any sick or vacation time this week.  See what I mean about God having perfect timing and taking care of what we need?  Anyway, I’ll try posting from the road, but I’m not sure what the signal will be like…so if you guys don’t “hear” from me until Friday, please don’t worry.  I have my normal cartoon scheduled to post Friday, but I’ll do my best to get online and post an update either Thursday evening or Friday “day” sometime, depending on how exhausted I am from the drive home Thursday.

Look back | Look ahead

Your pregnancy: 23 weeks

See the big picture

How your baby’s growing:

Turn on the radio and sway to the music. With her sense of movement well developed by now, your baby can feel you dance. And now that she’s more than 11 inches long and weighs just over a pound (about as much as a large mango), you may be able to see her squirm underneath your clothes. Blood vessels in her lungs are developing to prepare for breathing, and the sounds that your baby’s increasingly keen ears pick up are preparing her for entry into the outside world. Loud noises that become familiar now — such as your dog barking or the roar of the vacuum cleaner — probably won’t faze her when she hears them outside the womb.

See what your baby looks like this week.

Note: Every baby develops a little differently — even in the womb. Our information is designed to give you a general idea of your baby’s development.

How your life’s changing:

You may notice that your ankles and feet start to swell a bit in the coming weeks or months, especially at the end of the day or during the heat of summer. Sluggish circulation in your legs — coupled with changes in your blood chemistry that may cause some water retention — may result in swelling, also known as edema. Your body will get rid of the extra fluid after you have your baby, which is why you’ll pee frequently and sweat a lot for a few days after delivery. In the meantime, lie on your left side or put your feet up when you can, stretch out your legs when you sit, and avoid sitting — or standing — in one place for long periods. Also, try to exercise regularly to increase circulation, and wear support stockings (put them on first thing in the morning) and roomy, comfortable shoes. You may be tempted to skimp on liquids to combat swelling, but you need to drink plenty of water because staying hydrated actually helps prevent fluid retention. While a certain amount of edema in your lower extremities is normal during pregnancy, excessive swelling may be a sign of a serious condition called preeclampsia. Be sure to call your midwife or doctor if you have severe or sudden swelling of your feet or ankles, more than slight swelling of your hands, swelling in your face, or puffiness around your eyes.

Exercise helps you sleep “When I started having trouble sleeping during my pregnancy, I asked my friends what to do. One suggested I take a half-hour walk during the day. It really helped me sleep better, and it felt great to have a little time for myself.” — Linda

Decision Guide: Should you bank your baby’s cord blood?

Cord blood banking is a procedure in which the blood left in your baby’s umbilical cord and placenta after birth is collected, frozen, and stored for future medical use. Cord blood is prized because it’s a rich source of stem cells — the building blocks of the blood and immune system. Stem cells have the ability to differentiate into other tissues, and cord blood can be used to treat a host of diseases, including leukemia and sickle cell anemia. Only you can decide whether banking your baby’s cord blood is right for your family. Factors to consider:

• Cord blood research is showing promising preliminary results.
Studies are under way around the world, and many researchers are optimistic about the future. For instance, cord blood researchers believe that one day some adult cancer patients may benefit from their own cord blood stem cells that were harvested at birth. The hope is that stem cells could be used to treat cancers that aren’t genetically based.

In light of recent animal experiments, many researchers also believe that cord blood will eventually be used to treat diabetes, spinal cord injuries, heart failure, stroke, and serious neurological diseases.

However, many experts caution parents to take such studies (especially those conducted on animals) with a grain of salt, because it’s difficult to predict when, if ever, these treatments will become available for humans. The March of Dimes, a nonprofit organization dedicated to improving the health of babies, sums it up this way: “The use of umbilical cord blood stem cells for transplantation treatment holds exciting promise, but this area of medical science is still largely investigational.”

• It’s expensive.
Private cord blood banks usually charge an enrollment and collection fee of about $2,000 or so, plus annual storage fees around $125.

• Chances are that your baby cannot be treated with his own cord blood.
If your child has or develops an illness with a genetic basis — which is often the case with conditions that could benefit from a cord blood transplant — his cord blood contains the genetic instructions for that disease, so it’s not a suitable treatment. Most banked cord blood is currently used to treat siblings.

• You probably have a better chance of finding a stem cell match in the public cord blood system than in your own family.
The chance of an exact tissue match between two siblings is only about 25 percent, according to Dennis Confer, chief medical officer for the National Marrow Donor Program, a nonprofit organization that maintains the largest public listing of umbilical cord blood units available for transplantation in the United States. In contrast, the chance of finding a cord blood match in the nation’s public banks is 75 percent, he says.

• Doctors aren’t ready to universally recommend banking your baby’s cord blood.
The American Academy of Pediatrics and some other experts have expressed reservations about private cord blood banking for the general public because they believe the chances a family will ever need the blood are slim and because they support a public cord blood donation system (similar to blood banks). However, cord blood banking is encouraged when there’s an immediate family member who’s already been diagnosed with a condition that may be treated with cord blood transplantation. (In this situation, you may be eligible for a special cord blood banking program called “The Sibling Connection,” in which your baby’s cord blood will be collected, processed, and stored for five years at no cost to you. Call 866-861-8435 for more information.)

• If your child belongs to a minority group, private storage may be of more value to you.
According to July 2003 figures, a Caucasian patient has an 88 percent chance of finding a matching donor through the registry of the National Marrow Donor Program, while an African American’s chances were significantly lower at 58 percent.

• For more information, see:
Cord blood banking: An overview
Private cord blood banking: Is it for you?
Finding a reputable private cord blood bank
Donating your baby’s cord blood

If you decide you want to bank your baby’s cord blood, talk to your caregiver and start researching both the public and private banking options now. Most private cord blood banks prefer women to sign up during the second trimester. If you wait too long, you may have to pay late enrollment fees.

Yep, another petition.  Boy, I’m really getting into this, aren’t I?  However, this really strikes home for me.  Recently, I found a support group for Mothers of Omphaloceles, or MOOs.  Its been a TREMENDOUS support for me, and I’ve gotten a lot of good information.

This morning, one of the mom’s sent out an email that I feel deserves some attention.  A petition is linked, to sign to help prevent something.  Basically, a group is demanding the sole right to use a medical term, and no one else can use that medical term without paying the group royalties.  Um, excuse me?  I don’t think so!

Anyway, my baby most likely has Pentalogy of Cantrell, so may end up with this other condition as well.  Please take a moment to read the email and sign the petition.  I’m quoting it here:

This morning I received an e-mail regarding a petition that is being set up by the founder of CHERUBS, The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support.  There is an organization that has filed a trademark application to own the phrase “Congenital Diaphragmatic Hernia Awareness”.  This means that no other organization, including CHERUBS, no medical center, no CDH family would have the right to use this phrase to help raise awareness about CDH.
When my O baby Aidan was 5 months old, the doctors discovered that he had a CDH, which is what led to the diagnosis of Pentalogy of Cantrell.  It is estimated that 1 out of every 2500 babies has CDH, and 1600 babies are born with CDH every year just in the USA.  Currently there is a 50% chance of survival; in the past the survival rate was just 10%.  Advances in medical technology have certainly improved the survival rate, but there is still more work to be done to give these babies a better chance at survival, and to lessen any long standing medical complications due to CDH.
If this organization is given the rights to use the phrase “Congenital Diaphragmatic Hernia Awareness”, it would hinder the ability for others to help spread awareness of this condition.    Not to mention that this organization would profit from anyone who did use this phrase.  Also, it has the potential to set precedent for other organizations as well…can you imagine if suddenly we were not allowed to use the phrase “Omphalocele Awareness” without penalty?
Below is the link to the petition, for those who are willing to help and try to prevent this from happening.
http://www.ipetitions.com/petition/cdhawareness/
Many Thanks!!
~Sarah (mommy to Aidan, 16 months old, Pentalogy of Cantrell)

Please help spread the word and prevent this from happening!  Many thanks!

Sorry,  I just couldn’t resist this :)  Since I’m on my way to get a root canal today, I figured we could all use a good laugh

I don’t like boycotts in general…I do my own personal little boycotts, but I don’t go along with mainstream ones unless I really believe in them.  For instance…I’m a Christian, and I love listening to AFR (Christian radio), but I’m NOT boycotting McDonald’s.  I love my Fish Filet and chicken McNuggets too much, especially during this pregnancy when nothing wants to stay down…not to mention, boycotting McDonald’s is only going to hurt the little guy…the people who have to pay large franchise fees to McDonald’s just to stay open.

I digress.  Melody wrote an excellent blog post here about the new movie “Tropic Thunder.”  I’d planned to see it, not realizing it was rated R, because the previews looked like a typical, satirical, stupid movie that would make me laugh.  However, after reading about the liberal use of the word “retard” in the film and the heavy marketing of said word, I’ve changed my mind.  I’m really disappointed that they chose to leave out the “N word” in a scene because it “felt wrong” but it was ok to leave many references to people with mental disabilities.

Carrie at Chocolate, the Other White Meat nailed it when she commented that the only groups its acceptable to make fun of in our country are “retards” and Christians. Couldn’t have said it better myself Carrie.

Anyway, go check out Melody’s post here and please visit the link to the online petition she posts about. This is a small thing, sure, but no less important.

Sorry for not posting for a few days guys…I’ve been properly chastised (thanks Carrie and others lol).

Not much has been going on…I usually don’t post between Friday and Monday (I take the weekend off) unless something is going on.  I just realized I forgot to take and post 22 week belly pictures, so I’ll try to get those for you guys today.

Had a concerning episode yesterday…thought maybe my water broke during the night (it was so much we had to change the sheets) but the OB said it was probably just the baby kicking my bladder in my sleep.  GREAAAAT.  Add bed-wetting to my resume.  Joy.  I don’t think it was THAT but I don’t know what it WAS either.  Being pregnant is so much fun…

Physically, I feel better than I ever have with any pregnancy.  I’m in a lot of pain with my hips and abdomen, but that’s to be expected.  Physical therapy is helping my hips, and I just have to grin and bear it with the abdominal pain.  I can’t take the pain relievers I took before I was pregnant, so I’m just riding it out.  Otherwise I feel great.

I had a few seizures over the weekend…nothing major but it wasn’t fun either.  I get so frustrated, like I’m a burden on my family, but I did manage to cook a lot more than usual so at least I wasn’t completely useless

I got food poisoning yesterday (nice, thanks Taco Bell!) and spent the evening and most of today in bed (phenergen, just one, knocked me for a LOOP but at least the vomiting stopped).

So that’s where I’ve been…nothing interesting has happened, but nothing bad happened either so that’s always good.

As for the baby…we’ve decided to name her after our grandmothers.  I loved Mamaw dearly and miss her still, and while its been 22 years or so since Justin lost his grandmother, he was as close to her as I was to Mamaw.  So, the baby will be Ruby Mae.  Which, ironically, was Justin’s grandmother’s full name.  Oops.  But, Mamaw’s name was Vida Mae, and as much as I loved her, I just can NOT name my baby Vida.  So Ruby Mae it is…and *I* know that the Mae is after Mamaw

We go to Vanderbilt next week.  We’re leaving Tuesday.  Pray for a safe trip.  We’re going to skimp to find the money for the gas and to stay at the Ronald McDonald House while we’re gone (pray they have an opening!!!) but we think we’ll be able to still get everything paid and taken care of.  I’m very nervous…its almost here!  In a little over a week’s time, I will know whether this baby has a fighting chance or not.  I’m not sure whether I want good or bad news…I know that sounds horrible.  Of course I want good news…but this baby will have many many special needs when all is said and done, and I’m not sure if I’m up to the challenge.  I pray I will be.  Justin gets upset when I mention the baby will be special in many ways and it will be years before she has a “normal” life if ever…and I understand his feelings, really I do.  I mean, who DOESN’T want their baby to be happy and healthy and “normal”?  I don’t care if she has special needs or not…I just want to know that *I* can do the best I can for her and make her happy.  So, I’ve been praying for strength for ME in that area.  I know Justin will come through for her…he really is the most amazing guy I’ve ever met.  He’s just worried and scared and he doesn’t express himself well under those conditions.  But no matter what happens, he’ll be there, steady as a rock, and I depend on that.  I’m praying for him too…

Anyway that’s where we are right now.  I’ll try not to stay gone from the bloggy world so long next time

Your pregnancy: 22 weeks

See the big picture

How your baby’s growing:

At 11 inches (the length of a spaghetti squash) and almost 1 pound, your baby is starting to look like a miniature newborn. His lips, eyelids, and eyebrows are becoming more distinct, and he’s even developing tiny tooth buds beneath his gums. His eyes have formed, but his irises (the colored part of the eye) still lack pigment. If you could see inside your womb, you’d be able to spot the fine hair (lanugo) that covers his body and the deep wrinkles on his skin, which he’ll sport until he adds a padding of fat to fill them in. Inside his belly, his pancreas — essential for the production of some important hormones — is developing steadily.

See what your baby looks like this week.

Note: Every baby develops a little differently — even in the womb. Our information is designed to give you a general idea of your baby’s development.

How your life’s changing:

At this point, you may find your belly becoming a hand magnet. It’s perfectly okay to tell folks who touch your tummy that you’d rather they didn’t. And if people are telling you that you look smaller or bigger than you should at this point, remember that each woman grows — and shows — at her own rate. What’s important is that you see your practitioner for regular visits so she can make sure your baby’s growth is on track.

You may start to notice stretch marks on your abdomen as it expands to accommodate your growing baby. At least half of all pregnant women will develop stretch marks by the time they give birth. These small streaks of differently textured skin can range from pink to dark brown (depending on your skin color). Although they most commonly appear on your tummy, stretch marks may also show up on your buttocks, thighs, hips, and breasts. There’s no proof that lotion helps prevent stretch marks, but keeping your skin moisturized may help with any itching.

Write it down “I kept a journal for my son while I was pregnant, and I brought it to the hospital with me so I could write in it as soon as I was up to it. It really helped to share all the feelings I was having.” — Anonymous

Surprising Facts: Body changes beyond your belly

You expected your belly to grow — and perhaps your breasts, too — but the following physical changes may take you by surprise. As with many pregnancy changes, hormones play a role in most of these alterations in your looks.

• Thicker, more lustrous hair You’re not actually growing more hair, just losing less than normal. During pregnancy, your body sheds hair much more slowly than it did before. What to do: If thicker hair is a boon for you, enjoy it. If it’s making your mane more unruly than ever, ask your stylist to do some thinning at your next cut. These changes won’t last forever. After your baby’s born, you’ll start to lose this excess hair, sometimes in clumps.

• Increased body hair Sex hormones known as androgens can cause new hair to sprout on your chin, upper lip, jaw, and cheeks. Stray hairs can also pop up on your belly, arms, legs, and back. What to do: Tweezing, waxing, and shaving are all safe ways to manage these temporary changes.

• Faster-growing fingernails Your fingernails may grow more quickly than usual, and you may notice changes in texture. Some women’s nails get harder, while others’ get softer or more brittle. What to do: Protect your nails by wearing rubber gloves when you’re cleaning, and using moisturizer on them if they’re brittle.

• Skin changes Some pregnant women report that their skin has never looked better. If that’s you, enjoy the proverbial “glow.” Others find the hormones of pregnancy aggravate skin conditions such as acne. What to do: Wash twice a day with a gentle soap or cleanser, and make sure that any moisturizer or makeup you use is oil-free.

• Stretch marks As your belly expands to accommodate your growing baby, you may get tiny tears in the supportive tissue that lies just beneath your skin, resulting in striations of varying color. These marks will begin to fade and become considerably less noticeable about six to 12 months after you give birth. There’s not much you can do besides trying not to gain more than the recommended amount of weight. Heredity is responsible for the natural elasticity of your skin and plays a role in determining who will end up with stretch marks.

• Skin discolorations Increased melanin can cause splotchy patches of darkened skin on your face. These pigment changes may become intensified if you spend time in the sun. What to do: Protect your face by using a sunblock that offers both UVA and UVB protection with an SPF of 30 or higher, wearing a hat with a brim, and avoiding the sun during peak hours of the day (10 a.m. to 2 p.m.).

• Larger and darker nipples and areolas You may find that your nipples and the pigmented area around them (the areolas) are getting bigger and darker. The little bumps on your areolas, known as Montgomery’s tubercles, may also be more pronounced. These bumps are oil-producing glands that help fight off bacteria and lubricate the skin. Some women also notice more pronounced veins in their breasts. What to do: Nothing!

• Larger feet Your feet may go up half a shoe size or more. Lax ligaments may make your feet spread a bit — permanently. Swelling can make your shoes feel tight as well, although it will go away after delivery. What to do: Buy comfortable shoes to accommodate your growing feet.

This Week’s Activity:

Check out your rings. It’s common to have some swelling in your fingers as your pregnancy progresses. If your rings are feeling the least bit snug, do yourself a favor and take them off now before it’s too late (or at least keep an eye on them). If you can’t bear to be separated from your wedding band or another important ring when you can no longer sport it on your finger, loop it on a chain and wear it close to your heart.