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 ;-)


  1. I read the whole thing!! LOL... :) Praise the Lord for wonderful nurses and doctors to take care of Natalie! It's amazing at how technology and knowledge has advanced to address these issues... Be encouraged! You and Aaron and Natalie are in my prayers! :)

  2. I so feel for you! My little son with SB is almost 6 months old. He's my 7th child and it was such an insane difference between the other 6 natural, vaginal births and our c-section and NICU stay. We are in Ohio, so different hospital.

    We spent most of our time beside with Mason. Even during rounds. It was a great time to try asking specific specialists questions.

    I keep a blog about our adventure too:

    Ask questions if you have any!

  3. I hope you don't mind a little friendly advice, I know it wasn't asked for and you seem to have a handle on everything, but...

    having spent too many weeks in the hospital last year, I can reiterate needing one parent there at all times. Glenn and I left for 3 hours once and in that time they intubated Bug. He was on an IV and has NEVER had trouble eating but, someone got it in their head that he needed to be tubed. They said they couldn't get a hold of us, which was a lie because I had my cell phone next to me at all times and so did Glenn and since my Parents were there, they thought he needed it and agreed. I was livid. LIVID. He developed a fever, 102, and was just miserable. I made them take it out 30 hours later because his white cell count was high now as well. As soon as they removed the tube...his fever broke and the next day his white cell count was normal.

    It's very important to make the decisions quickly and having one of you there at all times, ensures that. Don't think of it as anything but the need to watch out for Natalie. Glenn and I took turns going home (a 40 minute drive one way). He slept better in the Hospital and I rarely slept when I was there so he kicked me out at night. I would go up first thing in the morning and he would go home and catch up on the sleeping and come back up. We spent several hours a day with each other, it didn't matter that it was in the Hospital. It just matter that we were both there for our son and we could make the decisions together.

    Please stay open for anything. Do not be so set on one course of treatment or process that you will not see anything that was not prepared for. It is THE toughest part about having a child with severe needs: being flexible and open to ANYTHING. There are so many IF's that are on the table now. You have your basis covered, you are doing great now, just trust that everything from here on out, you can handle, and you can adapt to. And you have the support and understanding of so many friends that have taken this journey with you, and that have an emotional involvement as well.

    You are doing so well, and are learning so much, I am so proud of you! Keep up the good work.

  4. Dear Robin,

    What courage you have as a mother, and what love! I can see that God is also blessing you with so much wisdom and discernment, ... in the questions you ask, the way you listen and take note of everything, and how attentive you are to so many important details of the birth and her care. I am so proud of you for all of that. What a wonderful mother you are, the way you love your daughter. I am thinking of you and praying for you.

    I am a speech therapist, and though I am not specialized in newborn care, there are those that are, who can assist with feeding/swallowing if there happens to be need. For example, working with sucking/swallowing difficulties or transition from NG tube to by mouth... that may not be an issue in any way, but it could be a good question to ask on your next visit - if pediatric swallowing therapists are on staff?

    May God bless you richly with peace, strength, and rest as your beautiful baby grows inside of you, and may He cover you, your husband, and Natalie each day with his abundant grace.

    Love in Christ,

    Lisa (flute player from Celebrants a few years ago, Guatamala team...)