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.