Surgery 8/7/12

So much has happened but I guess we'll start at the beginning: Monday evening, after some slightly too-eventful car problems on the way, Isaiah and I finally checked into the hospital in San Francisco. Thanks to Isaiah's parents for driving us into town so late! We wasted no time in getting into a room, changing into my awesome hospital gown and getting an IV in place. Yes, it hurt. And it bled a lot. Then we watched some olympics and the nurse actually let us sleep for a while that night. Around 6 am all the real excitement began. I got a medical history and vitals taken. Two big guys wheeled my little bed down to the operating prep room to get the epidural. The room had a beach scene mural with seagulls painted on the ceiling. I guess that helps you relax or something. Yes, the epidural hurt too, but not that much. Immediately after the epidural catheter went into my back I started feeling really dizzy and nauseous and told the doctors so. They said, "We'll be done in about 2 minutes and then you can lie down." The thing is--when I feel like I'm going to throw up, I'm going to throw up. Thankfully, or unthankfully, Isaiah knows this first hand and rushed the nurses to get me a bucket STAT. Go figure, the instant the bucket was in front of me I threw up. Great start to surgery. Another slight complication came when everybody kept asking about my blood type. Apparently the blood bank was having a hard time matching O- blood with RhoGAM shot antibodies. We waited to enter the operating room until they could verify I had a blood match. They must have found one because after about half an hour of waiting I kissed Isaiah goodbye and entered the OR. This room had constellations painted on the ceiling. Another attempt to relax me, I suppose. There were several doctors including the neurosurgeon, the fetal surgeon and the anesthesiologists setting up in the room. We waited a while for the ultrasound doctor to come set up her equipment. The ultrasound stays on the entire time to monitor baby and make sure he's okay during surgery. One doctor put oxygen over me and told me to take deep breaths. I took a few and thought, "This must not be the oxygen that puts you to sleep because I'm still awake." I don't remember anything else.

When I woke up I saw Isaiah and recognized our original hospital room but I was so tired I fell right back asleep. I heard things periodically through the day as doctors came in to check on me and ask how I was doing. The most important thing I heard was, "Everything went really well." I gave thumbs-ups to indicate I was okay, and I slept as much as I could. I couldn't say a thing--my voice was shot from the breathing tube. I could barely force out a whisper.

I must have been awake around 4:30 when I turned to Isaiah and said, "I think my catheter is dripping. I feel like I just wet the bed." The doctors and nurses, who knew more about catheters than I do, probably knew catheters don't just "drip." My water broke.

Did you know your water can break but it doesn't mean you're going into labor? Me neither.

Most of the time...around 39-40 weeks...when women go into labor...their water breaks...and nobody really knows why it happens. Well we know why my water broke. It's because I had fetal surgery. We also know that now I will stay in San Francisco until I deliver baby. That's a bummer. It's a big bummer. What we don't know is when the baby will come now. Obviously we're concerned about him coming very early. However, we know that my water breaking doesn't necessarily mean I'll be having him today or tomorrow or even next week. In fact, strange as it seems, the doctors said the earlier your water breaks, the longer you tend to stay pregnant. The fact that my water broke at 25 weeks 2 days doesn't guarantee Baby Hudson will be born super early. We have high hopes Baby Hudson will stay put for many more weeks so he can keep growing and developing in the best place possible--in my tummy. We hope we're in the best place for him to get quality care whenever he's born. As much as it stinks to be in a hospital for the rest of my pregnancy, as much as I hate to think about being away from Isaiah and my family, and as much as I want Isaiah to be here when I deliver my baby, the MOST important thing to me now is keeping Baby Hudson healthy. We'll keep you posted on our efforts!

SF Day 3

Today I learned baby boys develop slower than baby girls. That's unfortunate since there's a high risk of prematurity after fetal surgery. We met with a Neonatologist today who was supposed to awaken us to the reality of having a premature baby. It was actually comforting to talk to her, though, because she knows how to handle premature babies. Doctors can do really miraculous things. We trust our baby will be in good hands at whatever week he's born and forever afterwards.

We also asked the most important question today: Will we get handicap parking? Yes!! Possibly during my bed rest and most likely once we have Baby Hudson. Spina Bifida? We're in it for the parking!

I got my second booty shot this afternoon. The shot, itself, hurt a lot less than yesterday but I felt the after effects for a longer time today.

Finally, what we've all been waiting for...our MRI results...were consistent with the ultrasound, so we decided to do fetal surgery! I check into the hospital on Monday night and surgery is scheduled for Tuesday at 7:30 am. It should last about 3 hours but don't freak out if you don't hear from us until later that night. Until then, thank you so much for keeping us in your thoughts and prayers. I'm actually a little bit selfish because I love tracking my blog page views and followers, especially right after I add a post. Feel free to view my blog as often as you want so I can rack up my stats. It makes me feel good.

SF Day 2

Today Isaiah said, "It's not as bad as a thought. I thought it was going to be BORING." Easy for him to say because he didn't have to lay in a tube for 2 1/2 hours without moving. I'll be honest--the MRI was not my favorite part of our evaluation.

MRI Experience: I stopped eating at 10:00 in hopes of limiting Baby Hudson's movement during the MRI so the doctor could get accurate images.Near 2:00 I prepped for the exam by changing into my first ever hospital-style gown. I liked it! The large blue pants with a huge drawstring (tie in the front), the large patterned top (two ties in the back), the blue and white striped robe covering everything (tie in the front)...it reminded me a little bit of the boy in the striped pajamas. I wish I had a picture of myself. The exam had two parts: one to see Baby Hudson's brain and another to see Baby Hudson's spine. My job? Don't move. So I didn't move! I didn't even scratch my nose when it itched so bad I wanted to scratch it off my face. For 20 minutes of the MRI I had to hold my breath for 15 second intervals. I felt my baby moving more than ever before but the doctor said Baby Hudson held just still enough to get the pictures she needed. Each picture made a weird buzzing/beeping noise which made the 2 1/2 hours a little less relaxing than I anticipated, but I did fall asleep for some parts of it after extreme boredom set in. I'm glad it's done.

We've now met with almost everyone and we've done all the necessary evaluations. We'll get our MRI results tomorrow. The doctors know we've basically decided to do surgery. As we're accustomed to, we received more surprise news about needing an additional two shots in my booty prior to surgery. Since fetal surgery will take place after 25 weeks, the baby is considered "viable", which means he could be delivered if needed or if my contractions don't stop. With that risk, I need a betamethasone (steroid) shot to help the baby's development. I got the first shot today and will get the second tomorrow. Only after the shot did the nurse tell me it's one of the worst shots. My tush was a bit sore but the pain left quickly. Phew!

SF Day 1

What did I learn today?

Baby Hudson's lesion is L3/L4.
Baby Hudson's ventricles are 17mm.
Baby Hudson still has 2 clubbed feet.
Baby Hudson can move his legs above the knee.
Statistics change depending on which doctor you talk to.
Statistics will not determine our decision to do fetal surgery because statistics do not clearly show if someone should or should not do fetal surgery.
Isaiah is the best husband.

One Week til San Francisco

Two weeks til surgery...IF we decide to do it.

Next week we're scheduled to meet with several doctors to 1) verify we qualify for surgery and 2) learn all we can about the pros/cons/risks involved with the surgery so we can make a fully-educated decision about whether to proceed. Initially the plan was for me to meet with the doctors and have Isaiah join me for surgery the next week. After all, we feel like we've already researched a TON about the surgery and have basically made up our minds to move forward. I talked with Rachel, our surgery coordinator, about that plan. Basically, she said Isaiah needs to be there with me to meet the doctors. She said, "I know you think I'm crazy because you already know you want the surgery. But everyone who comes out here wants the surgery, and more people than not DON'T have it." So...Isaiah is coming with me to meet the doctors! That means he'll be gone from work for 2 weeks (working remotely as much as possible) so he can be with me during our decision making and surgery, which will probably be the toughest part of this whole ordeal. I love him so much.

So why do so many people not have the surgery?
1) They don't qualify. We've already "passed" most of the tests we need except for a fetal MRI which we'll do next Wednesday in SF. If there are multiple complications with Baby Hudson's brain then they won't operate on him. I'm told it's not likely they'll find anything to hold us back at this point.
2) The risks of the surgery outweigh the benefits. This could be true if Baby Hudson had a low lesion or no fluid build-up in the brain. However, we're told he has a fairly high lesion and mild-moderate fluid build-up which makes him a good candidate for surgery. Chances are the benefits will outweigh the risks in our situation.
3) Insurance denies coverage. Ex: http://www.getusedtothestairs.blogspot.com/2012/04/curse-educators-mutual-insurance.html. Thankfully, this Utah family eventually got approved, had the surgery, and just delivered their sweet baby girl this month in SLC. Isaiah and I are thankful to have excellent insurance to cover the bulk of our medical expenses.

And so we continue on our adventure. Next week we'll meet with:

¨       Pediatric/Fetal Surgeon-Hanmin Lee, MD or Shin Hirose, MD

¨       Perinatologist-Larry Rand, MD or Lena Kim, MD

¨       Pediatric Neurosurgeon- Nalin Gupta, MD, PhD

¨       Anesthesiologist- Mark Rollins, MD or Jennifer Lucero, MD

¨       Social Worker- Sharon Nomburg, LCSW

¨       Radiologist- Roy Filly, MD

¨       Pediatric Cardiologist- Anita Grady, MD

¨       Labor & Delivery-Molly Killion, Clinical Nurse Specialist

¨       Neonatologist- Sonia Bonifacio, MD

¨       Spina Bifida Clinic Coordinator- Cindy Lazzaretti RN

¨       FTC Nurses- Jody Farrell MSN, PNP, Rachel Perry, RN 

Who knew having a baby could be so complicated?

We're having a baby!

Amidst the few complications that have come up with my pregnancy, I almost forgot: We're having a baby! He's not a broken object. He's a baby boy just like the millions of other baby boys in the world. But he's different because he's my child, my first child, and I'm gonna be his mom. And Isaiah is gonna be his dad. And we're gonna be a family and watch fireworks and open Christmas presents and find Easter eggs and eat too much Thanksgiving dinner. We get to find him a crib and bedding and a car seat and stroller. We get to play peek-a-boo and read bedtime stories and sing nursery rhymes. We get to feed him and dress him and change his diapers and do his hair. He'll probably cry and not want to eat all of his dinner before dessert. He'll probably wet the bed and leave the house without telling us where he went and forget to do his homework. Maybe he'll ask for candy in the grocery store check-out line and I'll have to tell him, "We can't afford that candy and it'll spoil your dinner anyway." I hope he has crazy curly hair and looks like his daddy. (Isaiah says he'll come out with red hair and freckles.) I hope he sleeps 10 hours every night and takes 2 hour naps during the day. I hope he loves sports so we can watch BYU football and the NBA playoffs together. I hope he's cute. I hope he will one day understand the love his parents had for him when he was still unborn. We hope he's not in pain right now. We hope we're making the right choices to help his future be as successful as possible. We're having a baby!

Sympathy

I don't usually enjoy attention but I've kinda needed it during the past few weeks. I've needed to know people believe in me and will be there for me. I feel a little more motivation to be strong every time someone tells me they support me.

Sympathy wears many colors. Ever since finding out Baby Hudson has Spina Bifida I've received sympathy in the form of emails, phone calls, prayers, and even flowers from my husband and my coworkers at Middlebury. (Aren't they beautiful?!)

The sympathy I was most surprised by came from my neighbor. She said, "I'm not sorry for you that you're having a baby with Spina Bifida. I think it's going to be really great for you." I loved that! She certainly has sympathy but not pity. It's easy to confuse the two, but what I really need is sympathy--not pity.

I got a call from UCSF yesterday. The tentative plan is surgery on August 7th. And so the countdown begins...