Thursday, October 11, 2012

Prayers Please

I had an ultrasound today to check on Natalie's growth, my placenta and all that since I have chronic hypertension. The u/s tech did my last u/s as well so she was aware of the SB and did some measurements for that as well, since she knew what the concerns were. Anyway... her ventricles are measuring up to 22 mm now, a marked increase from last u/s. The ventricles are the space in the brain where fluid is building up causing hydrocephalus. The slight increas in the ventricles size at the 20 weeks ultrasound is what first triggered that there was something wrong with our baby girl. Over 10mm is abnormal and over 15 is marked or severe. In the last 3 weeks, since the last ultrasound, they have grown from 16mm and 188 to now 22mm. My OB emailed me and said she forwarded the report to Natalie's neurosurgeon and to the MFM (perinatologist) handling my care to see if they think the c-section needs to be moved up for natalie's health. It feels like my guts are being ripped out. While I know the ventricles can get bigger than they are and still be "okay" as in not doing damage to her brain, it still freaks me out. This momma's heart hurts for her baby girl so bad..... I called the pedi neurosurgeon's office and talked to the medical assistant. She said Dr. McNatt was in a meeting, but that she would leave hima message and put a post-it note on his computer so he would call me back. He is the one who really knows her health and condition and can tell me it's okay... or not. The most worrisome part to me is that it grew so much in just 3 weeks... how much more will it grow in the three MORE weeks we have until her scheduled section date??

Sunday, September 16, 2012

The Infertile's Baby Shower

As a women who struggled for five years with infertility, a baby shower was something I always longed for. A day to celebrate this gift of life growing within my getting-bigger-all-the-time belly had come to be this elusive day that I honestly wasn't sure would ever happen. Well.... the time finally DID come. After five years and many tears, Aaron and my beautiful, precious and oh so special baby girl is only weeks from arriving and today I had my first baby shower! It was a very special day with family and friends who have longed and prayed for this baby along side us for years. There was lots of laughter, games, presents, fellowship and yes... some tears as joy flooded my heart. I am so thankful for the many gifts God has given me, but today I am especially thankful for the gift of friends made family. As Natalie grows, I hope that she will come to realize just how much she is loved by so many wonderful people. That love was completely evident today... that's for sure!

Thank you to everyone for your generous gifts, but most of all just for being there to be a part of the celebration of our miracle baby girl. I can't wait to do this all again next week with my Selma family and friends!

***So Blessed***

Tuesday, August 21, 2012

Ultrasound and Perinatology Appointment

Today Aaron and I had another level 2 ultrasound to get another look at Natalie's NTD and check on the hydrochphelus. Everything looked good with Natalie. The fluid is still building up in hear head, which is to be expected and the cerebellum is pulled down further into her spinal column, which is also normal. Last time Natalie was still so little that it was hard to get much of a look at her spine. Today they were able to view it really well. Last time they did not view much of a menengocele (sack of fluid at the point of the defect) and today they were. The perinatologist said it is not a huge protruding sack, but it is noticeable now. Everything else still looks great with all her other organs.

Here are a couple shots from the ultrasound:



After the ultrasound we were able to talk with the perinatologist about the delivery and how this is all going to come together. This is what we discussed:

What date are we looking at for the c-section? What time of day? When will it be scheduled?
It looks like October 31st is the best date right now. The perinatologist who I have been seeing is the head of the department and apparently either wants herself or one other doctor to deliver Natalie. She doesn’t want to schedule the section until after I am 39 weeks along but not too close to my due date and the neurosurgeon wants it to be in the beginning of the week, so this leaves very few options. I guess she is schedueled for l&d for Nov. 4th which is a Sunday and too close to my due date. The other doctor is on schedule for the 31st… so that is when she prefers. The genetics counselor who handles our case sent a message to the neurosurgeon to see if the dates are okay for him (since he will need to come evaluate Natalie on the 31st and then do her surgery the following day.) If he is not okay with this date, then it goes back to the perinatologist who will give a couple other dates, back to him for approval until we have everything scheduled. I was really not expecting to hear that she would be delivered on Halloween, so I am a bit shocked and disappointed at the moment. We won’t know the time of day until everyone agrees on the day and then it will be in the books. I am supposed to hear back tomorrow. We’ll see.

How long will I have to be admitted?
It depends on how my recovery goes. She said some women get discharged 2 days after surgery others need to stay longer. It just depends.

How much will I be able to be in the NICU with Natalie?
Because I will be a patient, I will have to have my vitals checked multiple times a day, be in my room for rounds, and all that stuff. So, I may not be able to be with her as much as I would like until I am discharged.

Will we need to do an amnio to check lung function before delivery?
No. The plan is to not deliver until 39 weeks so Natalie should be fully developed. If, for some reason, she is going to have to be delivered early and it was before 37 weeks, then they may do the amnio to check her lungs. Otherwise, no.

What is the contingency plan if she starts to come early or if I develop complications?
If I go into active labor I am to go to a local Kaiser to be checked. Then, if there is enough time, they will transfer me via ambulance to Roseville.

How often will we need to be back here for monitoring?
Not at all. There is nothing that could happen with Natalie in utero that will change their plan, so there is no more need for monitoring from the perinatologist.

We talked to Dr. McNatt about delayed cord cutting and he said it is fine with him. How do we accomplish this with a c-section?
It is fine for us to do delayed cord cutting provided there are no complications with Natalie or my health that require them to cut the cord earlier. The example she gave was if the placenta was cut or something like that. She said they will allow only 1 minute before cutting the cord, which I guess is better than nothing. I believe she said they will actually lay her on my tummy.

Can Aaron cut the cord?
No. It is a sterile field that he will not be allowed to go into.

Can I have Aaron and my mother in the OR? Or when Aaron leaves to go with Natalie can my mother then take his place?
Only one person can be in the room at a time. So, when Aaron leaves for the NICU with Natalie my mom can come in, but they cannot be in the OR at the same time.

Friday, August 17, 2012

Time Goes On...

The last couple weeks have been rough for me. I've been trying to keep my mind and body busy with sewing and crafting for Natalie's room, but it's still been pretty hard....

Next Tuesday we have a repeat ultrasound with the perinatologist to check on the fluid building up in Natalie's head and also to try and get a clearer picture of the neural tube defect. At the same time we are supposed to be doing the delivery planning, setting a date for delivery and getting all that stuff set up. I am anxious to get this over with so we can move forward with the last several weeks of this pregnancy.

So, as I said, I have been sewing and crafting for Natalie's room and today I was able to finish the curtains for her room! They are lined with blackout fabric so her room can get nice and dark during the day, keep out street lights at night (for when she eventually uses it for night sleeping) as well as helping regulate temperature in that room. We don't have the curtain rod yet, so I just hung them up in the office to see how they draped and make sure everything lined up and looked nice and.... I LOVE THEM! Yay! I also have the crib skirt mostly completed. I don't want to finish it until we have the crib up because I want to make sure they fit perfectly.

The crib... that's a whole issue in itself. *sigh* We finally got her room done this week (new window, removed and replaced baseboards, new closet doors, painted) and had a carpet cleaner come in to make her room safe and clean. On Wednesday we opened up the box the crib was in only to find one of the legs was broken :( I called Babies r Us and was able to take the piece in and get a replacement piece. The next day (last night) when we went in to put it together we found that the headboard piece was defective. The trim along the top was pulling apart from the main piece. So... I called, once again. At this point we asked them to just send us a brand new crib from the manufacturer, which they origionally said they could do. But, suddenly the story changed and our crib was not available for order at the moment. So, the resolution was to order the defective piece and give us a 20% refund on the price of the crib. Of course, now we have to wait 7-14 days to get this piece which does not make this momma happy AT ALL. But, it is what it is.

Anyway... here's a picture of the curtains :)

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.

Friday, June 29, 2012

Step One- Done!

Today I finished cutting out the quilt I am making for Natalie. Well, I also cut out the bed skirt, but I figure I should work on the quilt first since it will be the most labor intensive of all the projets for her nursery. I got the idea for the design on the quilt from one I saw on etsy. I couldn't find a pattern for one like it, so I busted out the graphing paper and made my own pattern. I wanted to frame the panel piece, so that's what I did. I cut out the piece I liked the best from the panel and the built the rest around it by framing it with all the prints from Robert Kaufman's Finally Free Spring line. I featured my favorite prints and the prints I'm using for the rest of the room by making those pieces wider and bolder. Now I can't wait to get it sewn up- I love it! The pillows I am going to make will be a similar design with different pieces from the panel framed out by the prints. LOVE! It's nice and big so she will get lots of use out of it for many years to come.

This is just the pieces laid out so I could make sure I measured everything correctly and liked the layout. Not like I have extra fabric to rearrange anything if I hadn't liked it, but still.... LOL

Wednesday, June 27, 2012

21 Weeks

Today marks 21 weeks of pregnancy! In 21 weeks I have grown over 10 inches across my belly button! This past week I can tell she has grown because I can actually feel and see her body lay in my abdomen. Pretty cool... and weird!

Not too much going on today. I got a call from Dr. NcNatt's office to schedule the neurosurgery consult. That will be next tuesday afternoon. Hopefully after we talk to him we will have a pretty complete picture of what delivery and the following NICU stay will look like.

I also washed and prepped all the fabric for the baby's room! I will probably start cutting it either tonight or tomorrow so I can get to work.

Tuesday, June 26, 2012

Phone Appointment With Nurse Terri

Now that I got everything up to date, here is the latest.... I had a nearly 1.5 hour conversation with the nurse coordinator for the SB clinic in Oakland today. She was quite a talker- haha! She had lots to say and answered all the questions I could think of, so it was great. Here is what we talked about

1. The SB clinic in Oakland is where all Spina Bifida (SB) patients in No CA Kaiser go. For the first couple years Natalie will be seen there every three months. Then it will go to every 6 months and by the time she’s in elementary school it will be one time a year. While at clinic, there will be a team of approximately 12 doctors/specialists who will be evaluating her (neuro, developmental specialist, orthopedics, urologist, OT, PT, etc.) Besides these quarterly appointments, she will also see her neurosurgeon in Roseville and the pediatric urologist in Roseville. Oh, and of course all her regular well baby visits….. oi. The clinic will also be there to assist with necessary supplies (like catheters) as well as helping communicate and navigate state agencies.

2. We should expect a 4-6 weeks NICU stay depending on if she will need a shunt or not. She said they recently had one baby girl go home after 3 weeks, but she didn’t want to give us false hope. Kaiser doesn’t want to send baby home until the incision is well healed so as to not risk infection or leaking spinal fluid.

3. I asked if there were pediatricians with Kaiser that they would be able to direct us to who would be knowledgeable with SB and she said she could. They have patients in our area so they know the pediatricians these patients are seeing, but she said I will always have the SB clinic at my disposal for questions and concerns. They will be able to better direct me with questions in knowing if it is just normal baby stuff or if it is SB related and will advise me and the pediatrician as well. So, that was good to know.

4. She reiterated that the outcome with Sacral SB is good… as good as it can be with a SB diagnosis that is. Statistically most babies with sacral SB will be able to walk with little to no assistance, it is much less likely that she will need a shunt with sacral SB as opposed to lesions high on the spinal column, but it’s nearly positive that she will have a bladder/bowel issues. She will be catheterized from birth. Of course, you never do know until the baby is here, but this would be the typical outcome for sacral SB. We did talk extensively about Natalie’s ultrasound findings in particular since she does have sacral SB, but also has Arnold-Chiari II Malformation and early signs of hydrocephalus. I already knew all these findings are typical with SB, but I wanted to know if this would make it any more likely that she will need a shunt. The answer was no. She said nearly all babies with an open neural tube defect, like Natalie has, will have Chiari II because the pressure of the spinal fluid is being released through the hole in her tube rather than building up which causes the brain to form oddly. This is also why Natalie’s head is so small in comparison to her body (her head is less than the 5% while the rest of her her body is in the 50%.) This is all normal for SB… Her head may be small at first, but when they close up her spine it will all normalize. Or she will develop hydrocephalus and need a shunt. Only time will tell.

5. She asked if the perinatologist had spoken with me about delivery and I told her I had been told a C-section would be necessary. Well, I guess that is not the case necessarily…. She told me there was a big study that showed that there is no effect on the outcome of the baby in a vaginal birth vs. cesarean birth. She said some neurosurgeons do prefer a c-section simply bc it is predictable and they are able to plan when the baby will arrive and schedule OR time for the babies neurosurgery when they have all their team and staff in the hospital. In Oakland they often do a scheduled induction at 38 weeks (ish) so the neuro team can still roughly plan when the babies surgery will be rather than waiting for spontaneous labor. I told her Aaron’s concerns of bacteria and opening up Natalie to infection with a vaginal birth as opposed to the more sterile environment of the OR room and she assured me that it does not really affect anything. The nerves that are exposed are already damaged/dead and are not going to be damaged any further by delivering vaginally. We will of course discuss this further with the pedi neurosurgeon and the perinatologist who will be in charge of my care.

6. We talked about the neurosurgeon in Roseville. She said she likes him a lot and the families who have worked with him all have good things to say. She said beyond being a great neurosurgeon, he also has a great bedside manner and is very personable. So, parents have been very comfortable with him. Something that I am not sure about, though, is that they have only have FOUR babies born at Kaiser Roseville with SB in the last two years! FOUR!! So…. I’m not sure about that. She said we can ask to deliver in Oakland if we are more comfortable with that, so…. IDK.

7. I was told to let her know if I/we would like to talk to other parents of children with SB to ask questions. I think I would like that… Also, on clinic days they do a support group of sorts for about an hour so parents can talk and share experiences. She said there are 5 or 6 other families in the Stockton area and she *thinks* some of them may meet up outside of clinic at time, but she was not sure. It is just beyond amazing to me how few families there are locally… SB is fairly common so this tells you just how high the abortion rate is for babies diagnosed in utero with SB. So sad….

Long time, new Journey

So, it's been a long time... I am now nearly 21 weeks pregnant (yay!) and have been greatly enjoying the world of pregnancy. Last week Aaron and I got some very unsettling news and I am finding that I really need to get back to writing down my journey so I can process everything that is going on. Here is what has happened since last wednesday... 20 weeks 0 days.

FB post Wednesday June 20th: So, baby Mac was naughty today for the ultrasound techs. And yes... I said techs. Baby was not cooperating for the first tech so she went and got another one to try and get the measurements she was unable to get done. It ended up taking nearly an hour to get everything done. The techs didn't tell me anything as far as how she was measuring and such. I have my OB appointment tomorrow and will get all that info then. She is definitely a mover and shaker though. And kicker and puncher LOL She didn't like the probe shoving her head around and she let ME know by punching me LOL

FB post Thursday, June 21st: Aaron and I found out today that our baby girl Natalie has a Neural Tube Defect (lay term Spina Bifida.) It is an open defect meaning the spinal nerves are exposed to the amniotic fluid. It is shocking to say the least and we are still trying to process everything. Continued prayers for our family would be much appriciated as we walk through this diagnosis....

APA post Thursday, June 21st (more details about the events of the day): so yesterday they were trying really hard to get a good picture of the spine and just couldn't get what they needed. Now I know why they were working so hard for that shot.... We learned today she has Spina Bifida. The ultrasound from yesterday did not determin this.... actually it did not even suggest it. They could not ever get a good image of the whole spine but found that there was extra fluid in the brain and that parts of the brain were not shaped/formed correctly. So, I was referred to a genetic counselor and offered a level 2 ultrasound. We headed to Sacramento for a meeting this afternoon. Once again we met with the genetic counselor and then were taken into ultrasound. They have a much better quality ultrasound machine and the tech was amazing. She basically redid the whole anatomy scan and after a lot of coaxing they were finally able to get the shot of the spine they were looking for... The perinatologist in Sacramento said the back of the brain was not shaped correctly. It's being pulled down by the spine from the NTD which is why there is the excess fluid on the brain. Right now the fluid is measuring 11mm. She said they worry the most when it is in the 15mm or above range so we are good there for right now. The excess fluid was the first trigger that something was wrong so it was a good catch, per se. There's also some kind of ridging on the top of the head that also indicated NTD. so the perinatologist looked at all the images and came in and told us the news. She said it is a small opening and very low (S1 or 2) so that is good. The lower it is the better the outcome, in general. So, they will do a scheduled c section and the will likely go straight to surgery. the peri I saw is not the one who will bo doing the section. I will go to either Roseville or Oakland which has a pediatric neurologist and level 3 NICU. She said she can't say for sure how they will continue my care or when the section would be, but probably around 38 weeks. They said they can't say for sure how it will affect her since the spectrum is so wide with NTD. It's low, so that is really good. But, it can still affect her ability to walk and she will have issues holding her urine and bowels. As far as how it will affect her brain we can't know for sure until she's here and probably just as she grows. They will do another ultrasound at 30 weeks (I think) to check on the fluid in the brain, but they said as long as it stays below 15mm the outcome looks better. The higher it gets, the more pressure it is putting on the brain which can cause damage. They said the problem right now is that it is open to the amniotic fluid which is toxic to the nerves and damaging them...I was crying and told the genetics counselor that I felt it was my fault since i have the issues with malabsorption of vitamins and such and she said there was nothing I could have done either way.

APA/Parentropolis Post Friday, June 22nd: Just got off the phone with the genetic counselor a while ago and got some more information and direction. 1. As of Now, we will be delivering in Roseville. I will have a perinatologist I will be working with in Roseville for delivery who has experience delivering babies with SB. It is most likely that I will deliver via C Section. The Peri and pedi neuro will be coordinating my section and Natalie's surgery. She did say I may have opportunity to deliver vaginally depending on a lot of factors and that I can talk more about this with the peri and neuro. TheNeuro Surgeon in Roseville will call next week sometime to do a phone appointment or will have me come into the office. 2. Surgery in utero is a possibility depending on UCSF and their qualifications. The genetic counselor is going to call UCSF and see if my case would qualify. UCSF is doing a study right now, but it would be random on if I would get in utero surgery (test) or surgery after birth (control). They also offer surgery by referral and Kaiser would refer us there for inutero surgery if we chose to go this way. In utero surgery would probably happen at 25 weeks gestation. I don't know if we are even interested, but it's something to look into. 3. I asked if I would be allowed to have more than one person in the operating room so Aaron can be with Natalie and someone can be with me, but she said they will likely be keeping her in the room with me while they are wrapping her in sterile gauze and whatever else they will do while they are closing me up. 4. They also put in a referral for the SB center or whatever it is called in Oakland where all the Kaiser SB patients in CA go. She said they should call next week and will be able to answer any of our questions on what to expect once she is here. I have a lot of questions regarding practicle things like clothing, car seat, stroller, sleeping arrangements etc. that I want to know about. This is also where Natalie will go for evaluations by OT, PT, SLP, etc. on a regular basis. 5. I will be going back to the genetics department somewere in my 28th-30th week for another ultrasound to monitor any changes. I am able to have the same peri and tech do the ultrasound as we had yesterday. 6. She emailed me the ultrasound report and the final impression is "Sacral (?S2) neural tube defect, withough meninges and with intracranial changes" Abnormal structures are: Head, brain, spine. Head: lemon shaped ("lemon sign") Brain: Cerebellum abnormal, banana ("banana sign") cerebellum lobes abnormal. Spine: sacral Spina Bifida, over 1 segments. Arnold Chiari Malformation. Everything else is normal.

FB post Saturday, June 23rd: It's been two days since Aaron and my baby, Natalie, was diagnosed with Spina Bifida and I am not worried... I am surprisingly at peace. I absolutely trust God's plan in Aaron and my life. I know Natalie was made perfect in God's sight. Every piece of me loves my daughter completely for who God made her to be. I also believe God made me perfectly to care for my precious baby with skill. I believe He has been preparing me for Natalie for a long time by giving me special gifts and life experiences specifically to be her mother. Many of your words have been kind and appreciated, but please know I am at peace and faithfully trust God's plan for our lives. Natalie is a blessing in our lives, a perfect Gift from God. I am honored to have been chosen to raise such a special, precious child and I am joy-filled! The joy of the LORD is my strength. Please do not feel like you can't be joyful for us as well. As Aaron and I prepare ourselves for the road ahead we need all the prayer, support and acceptance from friends and family as we can get.