She's a Fighter!

Ashlyn Grace is so strong. I am in awe of everything she has been through in her first week of life and how gracefully she has done in the midst of it all. There is no denying she is a fighter and will never give up! I cannot believe that a mere 23 weeks ago, a perinatologist was discussing our "options." Ashlyn is a perfectly normal and happy baby girl....how could the doctors even think I would consider having an abortion?! I feel so lucky to be blessed with my brave, beautiful, amazing baby girl.

Beaufiul Imperfections

Ashlyn's bandages were removed from where her incisions were. She has two incisions on her scalp and one on her belly. You can also see where the shunt lies under her skin. I do believe her scars are so beautiful because they represent her strength and amazing grace.

Belly Incision

(where the distal catheter was placed in the peritoneal cavity)

Scalp Incision #1

(where the proximal catheter was placed in the lateral ventricle)

Scalp Incision #2
(where the shunt valve is located...look carefully you can see the outline of the shunt)

Kirch Developmental Center

Another 8:30am doctor appointment.....I am still NOT a morning person. Ugh! But these early appointments allow Chris to come with me so I cannot complain. This morning, we had an appointment with Dr. Sulkes, a developmental pediatrician at the Kirch Developmental Center. I am so glad that I can finally say this: this doctor is great!! I have not been terribly impressed with the care we have been receiving with the perinatal group....basically because I feel like they are not keeping us in the loop as adequately.

Dr. Sulkes made every effort to answer our questions and give us information. He even looked up the results of the fetal MRI for us! Besides explaining what the Kirch Center is all about, he gave us straightforward information on what to expect in our situation regarding hospitalization and surgery. Most importantly, he reassured us that despite most likely requiring a surgically placed shunt early in life, Ashlyn should have no problems with walking and talking. With the issues at hand, she is at risk for developmental delays, but that does not mean she will never meet such milestones. Plus, the Kirch Center will provide "Early Intervention" to help facilitate her developmental progress.

Now for newest information about Ashlyn's beautiful brain.....The fetal MRI basically shows ventriculomegaly of the lateral and third ventricles, which we knew. The images show that the amount of subarachnoid space is within normal limits, and the corpus callosum is visible and appears complete....both good things. The radiologist's report agrees with what our ultrasounds have shown...that it appears to be due to some sort of blockage or narrowing in the aqueduct of sylvius (called Aqueductal Stenosis). The MRI does not indicate that there was the presence of any brain mass (tumor) causing the blockage. They cannot rule out that there is a webbing in the aqueduct causes backup of CSF in the ventricles. So basically.....not a whole lot of new information. Kind of reinforces the diagnosis we have been given. But overall it is reassuring in the fact that no other issues were detected...it is still looking like an isolated birth defect at this point (phew).

I have decided that I need to get a medical binder for Ashlyn together before she is born. So I am going to request at my prenatal appointment on Friday that I get copies of all ultrasound and MRI reports. Why didn't I think of this sooner?!

I am currently 34 weeks 1 day pregnant so that means that it is possibly that in less than 3 weeks Ashlyn will be here! That is if delivering at 37 weeks is still the plan (hopefully we'll find out on Friday). In the meantime, I still have so much to do (some things more important than others)!!

1. NICU visit
2. Tour of Strong L&D
3. Meet with Pediatric Neurosurgeon
4. Pack my hospital bags (bags for Chris and Braeden too!)
5. Pre-register at the hospital
6. Fill out short term disability forms
7. Prepare Ashlyn's medical binder
8. Install car seat bases
9. Pick out our double stroller
10. Get house "baby ready"
11. Find out if the glider chair is still under the mountain of clothes I have neglected to put away....consider unburying it before Ashlyn arrives
12. Put batteries in all the baby bouncers and swings
13. Find a house flag that says "It's a Girl"
14. Pick up last minute baby supplies (still need NB size side snap t-shirts, mittens, hats, etc)
15. Get Ashlyn her own medical supplies (ie, thermeter, nasal aspirator) and label so she and Braeden don't share germs
16. Store away any of Braeden's too small or out of season clothes and accessories
17. Find a 12month size "Big Brother" onesie or t-shirt
18. Get new jump drive for digital pictures and videos
19. Upload all the videos from my iFlip so that I actually have space to record baby videos
20. Get the guest bedroom mom ready
21. Stock the freezer with easy meals
22. Install ceiling fans in bedrooms (prevents SIDS)
23. Don't forget Chris and my anniversary on May 17th!!
24. NEST NEST NEST
    

This list is seriously making me want to go lie down and nap. So much too do...and did I mention Chris is going to be out of town for 4 days at a conference (May 3-6)....Can I start maternity leave now?!

(Cartoon courtesy of www.baby-gaga.com)

NST and Impromptu Ultrasound

This afternoon I went to my first ever non-stress test sans Braeden and hubby. The doctors have decided to do weekly NSTs because of my blood pressure being elevated and the fact that this pregnancy is already complicated to begin with. During an NST, they look at baseline fetal heart rate, the variability of the fetal heart rate, accelerations or decelerations in the fetal heart rates, kick counts (you have to press a button whenever the baby kicks), and contractions. The NST is considered reassuring if the baby has two episodes of accelerations during the 20 minutes of monitoring.

The very nice nurse hooked me up to the monitor (just like the one you get put on when you are in labor) and positioned me comfortably on my side reclining in a chair (so much better bedside manner than at the fetal MRI last week!). Right off the bat, Ashlyn had a beautiful acceleration. Good, I thought, this should be easy! Unfortunately, she proceeds to start having decelerations soon after that....She would drop lower than her baseline fetal heart rate, but very quickly recover. I read online (since I didn't end up getting a great explanation as to why this was happening) that these variable decels can be related to the baby movements or to cord compression. Sometimes the decels correlated to when I indicated that I felt a kick.

Toward the end of the 20 minutes, there was only one good acceleration so the nurse tried some manual stimulation by pressing on my uterus. This did help Ashlyn have another good acceleration. No contractions at all during the test. The nurse took the tracing to show the doctor in the office because of the frequency of the variable decels. Here is part of the actual NST tracing from today:


The nurse came back pretty quickly and asked how I would like to get another picture of my little girl. Another ultrasound? I just had one last Monday! Of course, I did not complain...I love getting ultrasounds and seeing my princess. I had to wait 5 minutes, but they squeezed me in for an impromptu ultrasound. I was nervous worrying that something was really wrong causing my baby to be distress....but the nurse was very reassuring. The ultrasound checked out according the tech after she reviewed the results with the doctor. According to the tech, they were just checking the amount of amniotic fluid, which was completely normal.

During the quick ultrasound, I watched as she measured the ventricle size again....We are up to 19 and 22 mm (up from 16 and 19 mm one week ago) and 7.8 mm for the third ventricle (up from 6.6 mm...keep in mind this is the ventricle that is barely visible on an ultrasound normally). No one commented on this significant increase in one week, but it is obvious that this is a problem that will keep getting worse in a short period of time. The head circumference was not measured this time around...but her head is starting to look bigger than normal on the scans....

Luckily, in 4 weeks I will be 37 weeks and if needed Ashlyn can be delivered so that she can be monitored on the outside. I was content of waiting as long as possible before delivering...but now I feel like it might be in her best interest to come out earlier so evaluations and interventions can be made. It makes me nervous knowing her ventricles are getting further dilated causing fluid to accumulate in her brain. As the pressure in the brain increases that is when you have to start wondering what kind of non-reversible neurological damage has been done....This just keeps getting harder and harder to deal with. I know we can handle it, but I just wish that my daughter did not have to go through all this. For goodness sakes, she is not even born yet.....I just want her to have a normal life because that is what every child deserves.

Here is the latest picture of Ashlyn Grace:

Fetal MRI

Yesterday, I got a call that prior authorization went through with my insurance so I was approved to get a fetal MRI. Imagine my surprise when they gave me an appointment for today!

I met Chris at Strong at 10:30, and his first comment was "this place is a zoo." Indeed it is....thus why I have qualms about delivering there and why I did not even consider working there as a nurse!

After we found our way to radiology, I got checked in and escorted to MRI. I am asked if I am claustrophobic..."nope, I don't think so" I respond. I had to answer a zillion questions regarding whether or not I have a body full of metal...my favorite question was if I had a penile implant! I think they should just have a metal detector in the doorway to MRI...I mean if you had a penile implant how forthcoming would you be about that revelation?! Needless to say, I am not metallic and was cleared to get the scan.

I had to change into scrubs pants and a gown...but the tech let me keep my shirt on (wish he made me take it off though....you'll find out why in a minute). He told me to take off my bra because of the underwire (ugh...total T.H.O.)...yet he never mentioned that I needed to remove my jewelry. Luckily, I noticed my wedding ring right before I sat down on the MRI table...

I had to say goodbye to Chris...he wasn't allowed to come with me. : (

They led me to the MRI machine. As a nurse, I have taken patients to get MRIs on numerous occasions so I wasn't freaked out by the contraption. I was give ear plugs because it gets pretty loud during the test. Again, someone asked if I am claustrophobic. My response: "I guess we will see in a minute...." I had to lie on the hard flat stretcher, and the techs put a board on top of my belly, which Ashlyn immediately started kicking at. I asked how it is possible to get a good image if she keeps kicking, and I was told that it is very difficult, but they will do the best they can.

So they start the scan, and I start to think that maybe I am going to be claustrophobic after all...After 5 minutes the techs come back. The guy tech thinks it will be funny to tell me it is all done. "Is it really?" I inquire. Um, "nope, just kidding. We have to reposition you." Ugh, what a douche...Back into the lemon squeeze machine (as I have nicknamed this torture device)....They proceed to take about a zillion scans moving the table a teeny tiny bit each time.

I was very uncomfortable lying flat on my back. Being pregnant, you are actually not supposed to lie flat on your back after like 20 weeks because it puts pressure on your vena cave (a big blood vessel). So pretty soon, I started feeling short of breath. I was freaking out a little bit because of how tight I felt in the machine. Plus my arms were flat against my side restrained in place by a big band...definitely not a relaxing position. I caught myself hyperventilating a few times and had to force myself to slow my breathing down. It felt like the room was about 200 degrees....Glad I declined that extra blanket that was offered to me! They had put a sheet over me, which I began to try to discreetly pull down with my restrained hands. I was working up a sweat...there were actually beads of sweat running down my face. Yuck! I was kicking myself for keeping my shirt on...great, I thought, now I have to go home in a sweaty shirt....

Periodically, I would let out a little whimper or moan on accident...but never once did the techs ask if I was okay. Even when my respiratory rate was accelerated, no one bothered to check to make sure I wasn't having a panic attack (or worse!). Whenever I have seen MRIs performed on conscious patients, the techs have talked to the patients over the intercom to tell them what is going on, reassure them as needed, and check on them. Only once did I hear anyone over the intercom...Right before they started just to tell me what I already knew...they were starting the test. Geez...I understand the test is difficult as it is a fetal MRI and as the secretary divulged over the phone not something they do very often...but come on! Show a little bedside manner!!

Throughout the entire test, Ashlyn was kicking like crazy....especially during the scans. I think she was responding to how loud the noises were! It took close to an hour (all the while I am lying on my back totally freaking out) when they finally had enough images.

They pulled me out of the lemon squeeze machine and unrestrained me. Yay, I am free! I ripped the sweaty discombobulated sheet onto the floor and sat up a little too fast. I could not wait to get out of the hospital....I had just about enough for one day! I was quite shaky and sweaty. I glanced down to see the river I left on the stretcher underneath me. It took me probably close to 5 minutes to get my shoes on because I was quite unbalanced....it felt like I was trying to walk after being a boat.

One of the techs escorted me back to the locker room and proceeded to point out every restroom on the way. I know I am pregnant, but come on...I can hold it a little longer....just let me get these sweaty nasty clothes off lady! I spotted Chris is the waiting room, and the look on his face was priceless...obviously I looked just as disheveled as I felt.

I proceeded to the locker room and looked in a mirror...yup just as I thought, I was quite a sight....I pulled off the damp scrub pants and take a look at the damage....total swamp ass (awww, old cross country lingo!)! I snap a quick picture for posterity:

I finished getting dressed and quickly shuffled Chris out of that place. His dumbass remark of the day was something like this: "Why are you so sweaty?" Hmmmm....why am I sweaty? Hmmmm...maybe because I was violated by the lemon squeeze machine for close to 1 hour....no that can't be it....I was off making sweet love with those ever so dreamy MRI techs....geez, I have heard enough stupid questions/comments for one day....

I have to work tonight, but I doubt I will be able to sleep before my shift starts....I am all wound up after this day. Now that I am free from the torturous lemon squeeze machine, I cannot stop thinking about the results of this MRI...what they could find. Most likely, it won't show anything new....but at the same time, I realize how serious this test is. As I was told, they don't do very many so obviously this is a diagnostic test reserved for only certain serious situations like ours....makes mama nervous.....I was trying my best to stay optimistic...but now that we are at the high risk group and getting all these fancy tests, I am starting to take on a new perspective...one that is not as easygoing and positive. I am starting to prepare myself for the worst just in case....I know I can handle whatever the outcome may be, but I cannot help stressing over the fact that we won't know until after she is born what her quality of life will be....Yet again, the watching and waiting is getting the best of me! Off to wait for the fetal MRI results....

23 Weeks Ultrasound

We had another ultrasound today. Too bad nobody told me that Dr. M would be in a meeting the time they scheduled my appointment. The ultrasound tech said that the ventricles just measured a little bigger than last time...really nothing new to report. I jsut wish the perinatologist was there to kind of give us a quick update of where we stand. More waiting I suppose.....

And now for the not-so-good news....

We had our ultrasound today to follow up after our devastating scan a couple weeks ago. The baby was not so shy this time around so as I previously posted....IT'S A GIRL!! I haven't had much of a chance to get overly excited worrying about everything...but YAY!!

So basically, the lateral and third ventricles in the brain are still dilated....not much more than last time though so that is reassuring. Dr. M was able to get a better look at the whole brain and found that the cerebellum and spine looked completely normal ruling out conditions like Dandy Walker or Spinia Bifida. He concluded that most likely the ventriculomegaly is being caused by aqueductal stenosis (never have a googled a word so much in just a matter of hours...). Aqueductal stenosis is one of the most common causes of hydrocephalus (excess fluid in brain). It is basically a blockage of the aqueduct of Sylvius, which is a small channel connecting the 3rd and 4th ventricles (refer to my Dec. 30th post for more info on the boring anatomy stuff). At this point, the brain is not measuring much bigger than expected (21 weeks...we are 19 weeks) so that is good news....but Dr. M did not really feel that we will be able to avoid hydrocephalus. Another reassuring point...so far there are no other obvious abnormalites that might indicate a chromosomal abnormality. Phew....

As far as the outcomes for Ashlyn, we really have no more information other than the diagnosis of aqueductal stenosis. Dr. M recommends to continue getting ultrasounds every 3-4 weeks. No amnio will be done at this point per our request. Right now, it is not clear if Ashlyn will have any neurological impairment and if she will need a surgically placed shunt. Only time will tell....

So for now....we wait.

The Day a Blog was Born

This day marks the birth of a blog.....On this day, my life was turned more upside down than I could ever imagine, and I decided that I needed to capture the moments, the emotions, and the struggles in way that would be cathartic for me, enlightening for others, and hopefully informative for mothers in similar situations. Read on....but be warned this is a long (but crucial!) entry....

Today was the BIG day....our second trimester ultrasound. Chris and I were so excited to find out if we were having a boy or girl. My mom and Braeden came along for the fun too. However, a day that started off full of lively optimism dramatically turned into a day full of utter despair.

The ultrasound starts off like another other routine anatomic scan. I drank a ton of water....and some orange juice in hopes that our baby wouldn't be shy! My bladder ready to burst, I hopped on the exam table ecstatic that the day for our big ultrasound was finally here. My mom had the video camera pointed right at the video screen so as not to miss a second of it. The ultrasound tech started the scan, but the baby was very curled up. Great, I thought, it is going to keep its private parts a secret.....Little did I know I had more to worry about....

The scan continued...The tech took the measurements that she could. Some things she couldn't get a good view of because of baby's position. She told me to empty my bladder and walk around in order to get the baby moving. I did as I was told, and she returned and continued poking and prodding me in attempts to get baby to move for her. Not much luck...but I didn't really think anything was amiss. The baby has been moving like crazy, and the heartbeat was nice and strong.

After trying another 15 minutes to get the right views, she told me to again walk around and try to get the baby moving. So I danced with Braeden and got a little silly.....As I was shaking my booty, the u/s tech walks in with Dr. M (Chief of OBGYN at the hospital). I quietly moved over to the table with my mind racing about what could be the matter. Chris and my mom did not seem phased by the turn of events...I don't think they realized that a stubborn baby is not a reason to have a perinatologist come in to do the scan. As Dr. M focused on the brain of my baby, I was devastated. The 15 minutes he spent trying to get the images he needed felt like an eternity.

Finally, he told me that he didn't get everything he needed, but he definitely had a big concern. In a straight forward, here are the facts, he informed us that the lateral and third ventricles in the brain are dilated. The high side of normal for a lateral ventricle is 10 mm, and our baby's measured over 12 mm. Unfortunately, because he couldn't get a good look at the cerebellum and spinal cord, he could not rule out certain conditions like spina bifida (I will call SB) or dandy walker (I will call DW). If the cerebellum and spine are found to be normal, he says the dilated ventricles most likely are due to aqueductal stenosis (I will call AS). I won't get into the details of what I have learned about those condition....I will wait until our next ultrasound when we hopefully can get a better idea of what the problem is.

So you wonder what is the big deal about the ventricles in the brain being big? Here is a little anatomy review: The brain continuously making cerebral spinal fluid (CSF). CSF is produced in the choroid plexus, which is found in the lateral, 3rd, and 4th ventricles. The fluid is normally drained from the lateral ventricle to the 3rd ventricle via the Foramen of Monro. The 3rd ventricle then connects to the 4th venticle by the Aqueduct of Sylvius. From there, the CSF can flow into the spinal cord where the fluid is reabsorbed into the circulatory system.

Problems arise when there is an interruption in the drainage of the CSF or excess production of CSF. The fluid backs up into the ventricles causing them to appear enlarged on the ultrasound images. If the condition progresses, it can lead to hydrocephalus ("water on the brain"....really "CSF on the brain"). In hydrocephalus, the head measures bigger than normal. This is dangerous because it can lead to an increase in pressure in the brain (increased intracranial pressure), which in turn can cause neurological problems.

Because I am a nerd, here is a diagram of the brain:

According to Dr. M, there is a 1% chance that the baby could have a chromosomal abnormality such as Down Syndrome, Trisomy 13, and Trisomy 18 (the latter two which are considered incompatible with life). An amino is generally recommended to rule out any chromosomal abnormalities because if there is something amiss chromosomally, the prognosis will obviously be different than with AS, SB, or DW. I am just over 17 weeks so I was told that I need to decide if I want an amnio right away in case something is severely wrong, and I wanted to terminate. Never could I have an abortion so I declined any further discussion of an amnio in favor of an indepth pediatric evaluation at birth. I just could not risk the health of my baby (who by all accounts could turn out normal) by having an amnio right now...it is still too risky. Maybe in the 3rd trimester, I will reconsider just to give myself peace of mind that we are not dealing with Trisomy 13 or 18.

At the talk of termination, my mom who was not holding up very well started to break down.....Surprisingly, I was calmly discussing the situation with the doctor trying to not let my true emotions show. Anyone who knows me knows I am overly emotional and not above crying in public for the littlest things. Plus, I am a hormonal, pregnant, sleep deprived mess....You would think the tears would be flowing....but for some reason I bottled everything up. I don't know if it is because I was discussing medical stuff. Maybe my experience as a critical care nurse allows me to segregate myself from the situation. At work, there is rarely a situation that causes me to cry at work....I am not the nurse that cries with her patients and family (which I actually feel really guilty about). I think that I am a compassionate and competent nurse, but because of that latter quality, I don't want my emotions to interfere while on the job. However, this baby is not a patient....it is my own child....The doctor and u/s tech must have thought that I am a horrible mother.....

Dr. M. boiled down the situation with a statistic that is not sitting very well with me....1/3 of babies with the enlarged ventricles (ventriculomegaly) will have normal neurological development, 1/3 will have mild to moderate neurological impairment, and 1/3 will have severe neurological impairment. Hearing that there is a 1/3 chance that my baby will he severely handicapped was very hard.

A big question I am sure on everyone's mind (mine especially) is what could have caused this? Dr. M reassured me that there is nothing I could have done differently. Most likely something by chance went awry when the brain was developing. Infection, tumor, and stroke could be other possible explanations. Despite the reassurance, I still fear that I caused this....Did I not protect myself at work properly? I could have been exposed to x-rays, chemo drugs, or infections.....

As for the course of action, Dr. M recommends serial ultrasounds....every 3-4 weeks to track the progress and look for any other abnormalities. We will go back in a couple weeks to see if the baby will cooperate for us. Fetal MRIs can be done, but he says that in his experience they rarely offer more information especially because of how high-tech ultrasounds are. Of course, he mentioned an amnio is something that is usually recommended. He said that for now, I can still see the midwives as long as I am being followed by him with the frequent ultrasounds.

He touched on the treatment options....mainly surgery after birth to place a shunt that will drain the excess CSF. As we get closer to delivery day, we will know more information...if a shunt might be necessary, if I need to deliver at Strong (the bigger hospital with a NICU and where the surgery would be performed), if a c-section is in order, or if early delivery will be beneficial.

I intended on going on a shopping spree after the ultrasound....since we couldn't find out the gender and given the disheartening news, we decided to head home. As Chris was driving on 490, I broke down. I started sobbing uncontrollably. I cannot even put into words the emotions I feel right now....so much disappointment, sadness, hopelessness.....I love this baby so much and want more than anything for it to be healthy and happy.

After all of this, I need to vent on one more thing (as petty as it might sound)....I only got 3 blurry u/s pictures! I know the situation was not the most common experience women have at a routine u/s...but come on! This is my baby.....I love this baby just as much as any mother loves her normal, healthy baby. Here are the pictures I got:

She's Definitely Got Heart!

Itty Bitty Toes!
Brainy Baby