Update on Ashlyn

We have something to be very thankful for this Thanksgiving. Ashlyn had a wonderful appointment with her neurosurgeon yesterday. Dr. S was happy with her progress and says she is doing great. From now on, she will just need to go in for an annual visit to check her shunt (unless complications arise of course). Her head size is 43.5 mm, which puts her at the 75th percentile. Imagine that....my daughter with hydrocephalus who had been off the charts is in the 75th percentile! Absolutely amazing! We feel so blessed that Ashlyn is doing so well despite her rocky start.

Tomorrow, Ashlyn will be introduced to solid food at her first Thanksgiving celebration. I cannot wait, and I will definitely take lots of pics to capture the special day. :)

Ashlyn's 2 Month Checkup

Ashlyn had a couple of doctor's appointments on Tuesday. First, she got up bright and early to go see her neurosurgeon, Dr. S. We were in the examination room for 5 minutes max (gotta love those specialists)! Dr. S. looked at her incisions, felt her fontanelle, measured her head circumference, and inspected the fluid accumulation around her shunt.

He said everything looks great right now, and she is back to the 98% on her head circumference chart (she had been off the charts). He told me not to worry about the ridge along her coronal suture that it is nothing to be concerned about right now. Phew! He did mention that the fluid accumulation around her shunt is not necessarily a bad thing, but he usually sees it decreasing by this point. If the fluid continues to increase around the shunt, he mentioned he might consider a shunt revision in the future. But for now, everything is going just as it should be! We don't have to go back to see Dr. S. for 4 months. And if everything is still going so well, we will just have to have a checkup with him once a year.

Later we went to Ashlyn's 2 month checkup with her pediatrician, Dr. A. Drumroll please......

Here are her most recent stats:
Height: 22 1/4 inches (55%)
Weight: 11lbs 12oz (75%)
Head: 40.8 cm (98%)

In 3 weeks, she gained 1lb 4oz and 3/4 inches. My baby is growing up way too fast!!

The rest of the appointment went well. Dr. A did an assessment, which was completely normal. After talking with me, Dr. A decided to increase Gracie's dose of Zantac to 0.6ml twice a day. At the very end of the appointment, my sweet baby girl had to get 4 shots and 1 oral vaccine! Her reaction to the injections broke my heart....it is so sad to see your baby cry out in pain. Poor girl...but she was brave and only cried for a minute after the nurse was all done.

I cannot get over that my little angel is 2 months old.....And I cannot believe how great she is doing! I feel so blessed that everything is going so much better than I could have ever expected. Ashlyn Grace truly is my amazing little miracle. I feel so grateful that God has blessed us with her. Okay, I need to stop typing because I am already starting to get teary eyed!

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.

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)

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.