Tuesday, July 31, 2012

How to Help

Since we found out six weeks ago about Natalie having Spina Bifida, Aaron and I have been overwhelmed with the support and prayers from family and friends. We are often told to let people know if we need anything and asked how our friends and family can help. I have been reluctant to let people know how to help, but after meeting with a therapist today, I realize I need to let people help us and to not be afriad to tell people what we need. So, here goes....

Prayer Needs

I know so many people have been praying for us and Natalie and we appreciate it SO MUCH!! Here are a few specific requests so you can know how to pray for us.

- Please pray for Aaron and I to continue to draw close to each other and to God as we walk this new journey

- Please pray for my health as I strive to make it to full term (37 weeks pregnant.) Natalie's prognosisis so much better if she is full term, so this is very important for her recovery.

- Please pray for Natalie to continue to thrive and grow in utero. Pray that the hydrocephalus stays under control.

- Please pray for financial provision for our family.

Emotional Needs

I struggle when I spend hours at a time alone. I need friends to call me, visit me, send emails, etc. It is really hard for me to step out and say this, but it is truth. My best days have been when I have been able to spend time with friends and family. My hardest days have been when I have been home alone.

ALSO, when we are in the hospital I would love to have visitors! The therapist I saw today suggested setting up some kind of sign up sheet since we can only have a limited number of people at a time. So, I think I will work on this. But, please, don't be afraid to come see us and Natalie while she is recovering.

Physical Needs

As we prepare for a long stay at the hospital, Aaron and I have been a little overwhelmed at the physical needs we will have that we honestly don't know how to obtain. We're trusting God will provide for these needs somehow... Some of them have already been met, too- which is awesome! We were in need of housing during Natalie's NICU stay and someone graciously offered to lend us their 5th wheel trailer! Other things we are in need of include:

- Gift cards for meals such as fast food (Subway, Jack In The Box, Togo's, McDonald's, Del Taco, Carl's Jr. are all near by) , grocery stores (Safeway, Raley's, WalMart and Target are near by), restaurants (Macaroni Grill, Dos Coyotes, TGIFriday, Chili's, Squeeze Inn are near by), etc.

- Gas Cards

- We need someone to either house sit for us OR people who would be willing to take in our dogs while we are gone, pick up our mail, and/or check on the house periodically.

Thanks, once again, for being such a great support system for both Aaron and myself. The therapist was so happy to hear that Aaron and I have such a large network of people who have been ready, willing, and able to provide support and prayers through this time. We really are so blessed to have such great friends and family!

Thursday, July 26, 2012

Fetal MRI

Last friday we had an appointment with Natalie's neurosurgeon to go over the fetal MRI. It went well... he said they (once again) had a hard time getting a good image because of the location of her defect, her position in utero and because she was moving around a lot. I was hoping Natalie would have a quiet morning and not be moving around, especially since I had to be fasting for the MRI. But, about a half hour before the scan she started moving all around. The tech had me lay down on the table and strapped this foam board thing across my abdomen and Natalie did not like that very much... she does not like being squished- haha! It makes me look forard to the final weeks of pregnancy when the only option she has is to be squished! From what they did get, the lesion is nearly positively low and small. The report from the radiologist says there is an approximately 11mm cystic lesion in the lower lubar/sacral region, this would be the menengocele. So, from what they can see, there is only a small sack of fluid, which is why it is hard to visualize. If it was a big fluid filled sack it would be much easier to see. The Doctor said that could be because it is leaking the fluid rather than building up into a big cyst.

Dr. McNatt said there are some good indications because of the position of her legs. He said generally if the baby did not have use of their hamstrings then the legs would be straight and the baby would be kinda bent in half at the waist. Natalie's legs were bent at the knees with her knees tucked up. So, that's good, or at least it doesn't indicate anything bad. Her hydrocephalus looks sigificant. Her head did look larger in comparison to her body overall as well. He's not worried about this, per se, since the infant head is very pliable and able to expand with the extra fluid, but he said it does make the probable need for a shunt go up. I asked if there is a point where he would get worried it is damaging her brain and want to deliver her early and he said no, flat out. That was really good to hear. The perinatologist who gave us the diagnosis five weeks ago made it sound like the fluid could/would damage her brain if it built up too much in utero, but Dr. McNatt said that's not the case. It is far better to keep her in past 37 weeks and then deliver, which he said would not compromise her neurological health. He did say the perinatologist may have a point where delivery becomes necessary just as far as being able to get her enlarged head out of my body even via c-section, so I will have to talk to her more about that at the next ultrasound.

Dr. McNatt told us he had just been meeting with the NICU nurses that same day to go over protocol of care for working with new borns/infants with Spina Bifida. They specifically talked about Natalie and the care she would require. It was so nice to know that our baby is not just another case file. They are preparing for her and making sure everyone has the knowledge they need to really make her birth, surgery and recovery successful. I know I have said if before, but  I'll say it again- we LOVE this doctor! He is very kind and compassionate. I started crying at one point and I swear he was almost crying along with me. I feel very lucky to have such a compassionate man caring for our baby girl.

Here are some of the best images from the MRI:

View from my side. You can see my spine on the right hand side, baby on left. She's feet down and it is like looking at her from a front view.

This is the view of the top of her head (the oval in the middle.) The two big white spaces in her head is the fluid (hydro)


In this one you are seeing a front view of her head and body. You can see her brain where again the two white spaces is the fluid (hydro)

Friday, July 13, 2012


Yesterday went well... at least as far as I know!! LOL Natalie was moving around a lot at first, but the radiologist didn't like how I was positioned anyway, so he came in, repositioned me and then she was much more calm and we started again. She was still awake and moving, but not like previous. It was uncomfortable laying on my back that long and my arms (which had to be over my head) were falling asleep the whole time, so I had to keep repositioning them in between shots. I didnt get to see any images... but I did put in a request for my own digital copy of the images and report. I was told it would take a couple days to get those together and then just however long it takes to get here through the PO... so probably about a week is all. I have an appointment with the neurosurgeon next Friday to go over the images with him and hear what his surgical plan will be. My mom drove up to come spend the day with me, so that was really nice. We had a nice lunch at Red Robin (Yummmm!) and then went to Buybuy Baby (where we are registered) so she could look around. I think my mom enjoyed playing with the toys the best! Haha! I kept trying to get Natalie to let her grandma feel/see her moving around, but (surprise, surprise!) she was being stubborn. Everytime Natalie would start moving around and I would tell mom to look or feel, she would stop! She does the same thing for her dad, so I shouldn't be surprised. :)

Wednesday, July 11, 2012

23 Weeks

Today marks 23 weeks!! Only one more week and I'll reach viability- hooray!

Today I made a trip to one of the local WIC office and was able to qualify for WIC benefits. This will be really helpful in at least reducing our food bill every month. I'll get things like milk, eggs, cheese, cereal, veggies, fruit, bread, etc and once baby gets here I will get even more because I plan to exclusively breast feed. We are right on the boarder of qualifying or not, so I am really glad we do. They also have lots of great resources to help with breastfeeding including providing me with a quality breast pump. Yay for one less thing to buy! LOL They are requiring me to see a nutritionist from the WIC office because I have a history of hypertension. I wish they would leave that to my doctor (since I see her regularly and my blood pressure has been under control with meds for years) and my Kaiser nutritionist, but.... oh well. I'll do what I need to do.

Tomorrow will be a busy day. We have a fetal MRI scheduled for tomorrow- exciting! This MRI will allow the neurosurgeon to get a much clearer and more accurate picture of Natalie's neural tube defect. Once they have this information he and his team can really know what to expect and be able to plan her surgery and care accordingly. I am pretty curious to see the images. You should google "fetal MRI" images... it's pretty amazing!

Monday, July 9, 2012

What's In A Name?

Aaron and I are not quite settled on a middle name for Natalie. Before her spina bifida diagnosis we were pretty sure what we wanted, but now we're not so sure. I have been searching around to find names that mean strength, strong, victorious, etc. but have not really found anything that we really like. Today I was thinking about women from the bible. There are many stories of women who overcame adversity or had great faith and trust in God. I'm sure there are also some great women in history that would provide a nice strong name.

Anyone want to help me brainstorm names? Go ahead and throw out ideas of some strong names that go well with Natalie. I'd love to hear them!

Thursday, July 5, 2012

Meant to Be

Today a friend of mine sent me a link to this video, "Meant To Be" by Steven Curtis Chapman. She said she saw it at the end of a Veggie Tales video and it made her think of me and Natalie. Take a listen if you want... it's a really great song and of course made me cry. Everything makes me cry- haha!

The lyrics say,

"Long Before You Drew Your First Breath
A Dream Was Coming True
God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You've Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much
More Than It Would Be Without You In It
You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You've Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be"

And really... how applicable is this to Aaron and my precious baby girl? God has made Natalie perfectly to fulfill HIS plan in the world. It's not the plan I had imagined for her, but I know God is going to use her life in a wonderful, powerful way.

In the last two weeks I have heard many people say a variation of, "God can heal her if he WANTS to." While I absolutely belive God has the power to heal and restore her body, I do not believe it is a matter of whether God WANTS to heal her or not. God will use Natalie in ways unknown to me at this time. Maybe God WILL restore her body or maybe God will use her because of or in spite of her disabilities. I really don't know. What I do know is, Natalie is a miracle. She absolutely is "perfectly, wonderfully, beautifully meant to be."

Wednesday, July 4, 2012

Neuro Surgeon, NICU and Social Worker- oh my!

Yesterday was a veeeeeeery loooooooooooong day. I apologize because this will be long and full of information, but writing it all out really helps me process everything.

Yesterday afternoon we met with Natalie's Pediatric Neurosurgeon in Kaiser Roseville, Dr. McNatt. Aaron and I were anxious to meet with him and hear from the expert what to expect. Overall we really liked him. He was very personable, explained everything clearly and took all the time we needed to answer our questions and address our concerns. Even when his nurse was bugging him with questions and knocking on the door, he made it clear that he didn't want to rush us or push us out the door. Made us feel very good!

Here is what we talked about:

What will be timeline from delivery to surgery?
They will not be rushing her off to surgery right away. He said he likes to have surgery within 24 hours, usually the morning after delivery. They will be taking her right away after delivery to the NICU to get her back covered and she will have to stay in a prone position (on her tummy.)

Can we hold her/nurse her before surgery?
No. The defect and sack of spinal fluid will be very fragile and the NICU team will be working to keep it all in tact until surgery. She will be NPO until surgery.

How long should we expect for the NICU stay?
He said two weeks. Aaron told him we were told to expect 4 to 6 weeks and he said that it can take that long, but if there are no complications and she heals well he would expect closer to a two week stay. He said NOT getting a shunt can actually sometimes lead to a longer stay because he would be more concerned about being absolutely sure she does not develop hydrocephalus.

At what point is the decision made to put a shunt?
After surgery to close up her lesion they will watch her closely to see fluid starts to build up in either her head or her spine itself. They will monitor it with ultrasounds and so on. Hydrocephalus can show up within hours but generally they will know within a week to 10 days if a shunt is necessary.

Will we be able to hold her shortly after surgery? What about breastfeeding?
That totally depends on her defect and how confident they feel in the wound closure. She will likely need to stay prone for a couple days to make sure there is no leaking spinal fluid. As far as he was concerned, if she needed to be in a prone position, she could still be prone and be in our lap. He said wants her in our arms and able to feed off the breast as soon as possible. I was crying and pretty emotional about not being able to hold her or breastfeed her for several days because that is so important to me. He shared with us that he has three daughters who all breastfed, one of them for FOUR YEARS! YAY! So, he completely understood the benefits of breastfeeding and my need to get her on the breast ASAP. It was clear to us that he was on board with Natalie being on the breast as soon as is safe for her.

How is the defect closed?
Let me see if I can explain this clearly… Right now the end of her spinal column is lying flat and open instead of in a tube like it should be. They will basically fold the sides around to make it into a tube and sew it up so all the nerves are back inside the neural tube where they belong.

What are our birth options? What is the determining factor for a vaginal vs. cesarean birth?
He said there is debate around this between doctors and specialists. He said he has seen doctors debating this in front of patients and he would not want to do this. Ultimately it is the decision of my perinatologist. He said the vast majority of perinatologists will prefer a c- section and he can understand why. Perinatologists do hundreds of c sections a year with good outcomes. If I delivered vaginally and she ended up getting meningitis from bacteria entering into her open spinal column they would feel like it could have been avoided had they done a c section. :-/ Since the peri we are seeing already told us we’d be having a c section, I am pretty sure I know how that conversations will go, but he said to still talk to her about it when I see her at my next ultrasound.

How many of these procedures have you done?
Although he hasn’t done many since coming to Kaiser he has done over 100 cases over his career. He said he is confident in his ability to handle Natalie's care, but if she was born and the defect was much larger than expected and he felt like he needed help, they would send her by ambulance to Oakland where he and the two other pediatric neurosurgeons would all operate together.

Will the anesthesiologist be a pediatric specialist?

Will there be residents/students involved?
No. Right now he doesn’t have any residents on rotation, but even if he did by the time we have surgery, the students would not be allowed to do anything more than observe.

When will we deliver?
He said the number one goal will be to bring her to term… the longer she stays in, the better. He said 37 to 38 weeks would be when he would expect everything to be scheduled.

After meeting with Dr. McNatt, we walked over to the birthing center to do a NICU tour. The nurse actually showed us around labor and delivery as well. There is a separate wing for high risk delivery, which is where we will be. She automatically assumed (like everyone else we have talked to so far) that we will be ding a c section. She showed us the OR rooms and recovery where I will go after surgery. Then she took us down the back elevator where the NICU team, Natalie and Aaron will go to take Natalie immediately to the NICU. She said they will put her in the prone position on a warming table (or whatever they are called) and let me see her and touch her before they take her to NICU. In the NICU Dr. McNatt will be there to assess her wound and get a better look at what he has to work with. They will then wrap her wound and get everything covered to avoid infection. I asked the nurse how experienced she and the other nurses are with Spina Bifida and she said a group of the NICU nurses just recently went to a big training specifically on how to care for SB newborns. She also told us that Dr. McNatt is going to be doing further training with them in the next couple months. We got to go in one if the units which happened to be empty. There is room for six infant in each unit, but the untis are very large. There are curtains to close each area for privacy when wanted. There are pumping rooms available, but the nurse said they encourage you to go ahead and pump bedside when she is still unable to feed at the breast.

Here are the questions we asked along the way:

What do we need? What can I bring? Swaddlers? Clothes? Breastfeeding positioners?
We are able to bring anything we want to make the NICU Natalie’s home. Blankets, clothes, swaddlers, stuffed animals, etc are all welcome. The nurse said for sure bring my breadfeeding pillow. She seemed really excited to hear that we wanted to bring our own things and decorate her area.

What time do they do rounds? Are we able to be a part of them?
Everyday the doctor will do rounds at 9am every day and once a week there is a whole team of specialists that do rounds together (usually Tuesday at 1:00 or 1:30.) She said usually parents aren’t a part of rounds, but I wonder if they would kick me out if I were just there?

How many visitors can we have at a time? We intend on having someone with her 24/7. Are there any limitations on visiting that we should know about?
We can have two people in the NICU at a time and one of them has to be a parent. This TOTALLY changes my plans. *sigh* I told her we intend on having someone with her 24/7 and she said that is fine, but Aaron or I have to be there whenever there is a visitor. So, either Aaron and I will never see each other so we can sleep or we will have to leave her for the night. Neither scenario is what I want. We wanted to let Aaron or my mom take some night shifts so Aaron and I could have time together… Aaron said maybe we could sign a waiver allowing grandparents to be there without us, so I am going to call the NICU social worker to see if we can make this happen.

When will we be able to start kangaroo care? How often? Etc?
As soon as the doctor releases her to be held we can start kangaroo care (holding baby skin to skin.) She said since Natalie will likely be full term and otherwise healthy we will be able to hold her as much as she tolerates. She said a lot of their babies are premature infants who have a harder time with kangaroo care, but since Natalie will most likely be a term baby she will probably LOVE it.

I/We will want to be able to do the first bath, first clothes, etc. Will you guys work with us on that?
She said we are more than welcome to take care of all of Natalie’s care needs when we are there. She said they are more than happy to help teach us how to do everything needed for her and want to support us more than anything.

I plan on exclusively breastfeeding and do not want Natalie to have ANY formula if at all possible. Will Natalie’s nurse help with positioning her since we will have to be working with her wound?
The NICU nurses are big advocates for breastfeeding so they will do everything they can to help me. There is a lactation consultant who is available for the NICU in the afternoons who will also be available to assist in figuring out positions to make breastfeeding work for us.

Are we allowed to take pictures in the NICU? Can we have a photographer come in to take pictures?
Absolutely! As long as we don't take pictures of any other babies in the unit we are free to take as many pictures as we want. A photographer can come in and bring props and everything as well. She said we can even have a disposable camer available for the nurses to take pictures when we are out of the room if we want. She said she loves to put cute bows on the baby girls and dress them up and take pics! haha!

We also were able to talk to the NICU social worker. We've been trying to figure out our accomodations for such a long hospital stay, so she was really helpful with information in this area. Kaiser Roseville has five RV spots with "complete hookups." This is on a first come, first served basis, but it sounded like it is generally not a problem to have enough spots for everyone who wants one. It may take a couple days to get a spot if they are all taken or we may be asked to leave if we've been there for a few weeks and our spot is needed. So, we will need some sort of backup plan. I did ask if they knew of an RV park close by as a backup plan and there is one in Loomis which is about 10 minutes away. Of course... we have to find someone with an RV to borrow first! LOL I do have a friend who offered her small RV, but it might be nice to have a larger one since it will be a long stay and Aaron will need to be getting good sleep so he can still go to work. But... beggers can't be choosers!

I asked her about the Ronald McDonald House which is located in Sacramento. It is a 30-40 minute drive, so not ideal, but it's still an option. To get into the RMH our social worker will call as soon as Natalie is born to get us on a waiting list. Then we would have to wait for availability. So.... doesn't really sound promising. We also talked about some financial options, which is really not my area of expertise. Aaron will have to talk to her more about these things when he is able.

So... that was our loooooong day. If you read this far you deserve a cookie ;-)

Monday, July 2, 2012

Step Two- Done!

I finished sewing the quilt top on Saturday night, but had a rough day yesterday and didn't get to post about it. I LOVE how it turned out. Love, love, LOVE!! Now I just need to sell some of my cloth diapers so I can have funds to buy the rest of my supplies (bating, backing, binding, etc.) I think I'll do the curtains next, but I need some muslin for that. I'm not worried about it... it will get done :)

Sunday, July 1, 2012


I've been feeling fairly lonely lately... like I need friends that just are not here. When Aaron is home and I have someone to be with and sometimes cry with I feel much better. Tonight as I was crying, feeling alone and wondering "why?" a song came to my heart. This song, I Need You More by Kim Walker, led into about an hour of time spent worshipping and crying with God. I think I need to start really relying on God to get me through this hard time instead of looking to people to help me. Perhaps that's not really profound and maybe it seems obvious, but I needed that message tonight.