Happy Shunt-a-versary!

(June 3, 2009 s/p VP shunt placment)

Ashlyn Grace's VP shunt is 3 years old!  Is it silly celebrating the birthday of an inanimate object?  Not at all!  After all, for a child with hydrocephalus, this medical device, which drains excess fluid off of the brain, is a matter of life and death.  Ashlyn is an energenic, normally developing 3 year old diva thanks to her shunt.  Many hydro kids are not as lucky to have such a reliable shunt and require frequent revisions and replacements.  I am blessed that we have gone 3 years with no major problems and pray for many more surgery-free years!    

We spent Ashlyn's "shunt-a-versary" at the Strong National Museum of Play, our favorite place in Rochester!!  We had a blast as usual, and I was overjoyed to be able to watch Ashlyn playing like any other normal, happy, healthy 3 year old.  Thank you VP shunt!  You rock and that excess CSF doesn't stand a chance against you.  Happy birthday!!   

 Ashlyn and Daddy giving hula hooping a whirl!

The gang hanging out at Sesame Street.

Papa teaching Ashlyn how to play the archaic video games from back in "his day".  

My 3 year old is a genius...she can play a mean game of chess!

(Of course, by chess, I mean just randomly moving pieces around with a intense look on your face.)

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. :)

Kirch Developmental Visit

I almost forgot to post....we had an appointment with Kirch Developmental last week. It was our first visit with a developmental pediatrician since Ashlyn was discharged from the NICU.

The appointment seemed to come out of nowhere. As odd as it sounds, I was beginning to stop thinking about Ashlyn having hydrocephalus and the shunt. She is just such a happy and easy baby that you would never know anything is wrong with her. Days go by where I don't even give much thought to it anymore. I never imagined I would be able to relax and enjoy my little girl without stress and worry 24/7. I am at peace with her diagnosis and am confident that her quality of life is and will continue to be wonderful despite her rocky start.

It is great being able to just treat her like a normal baby now. I have stopped measuring her head circumference on a daily basis. I do still feel her fontanel to make sure that it is soft, but I'm not obsessive about it. While I am always on the look-out for symptoms of shunt infection or malfunction, it is no different than how a parent keeps an eye on their child for symptoms of an ear infection or cold.

Because of this new and more carefree approach to my parenting, I was thrown for a loop when I got the call reminding me of our appointment at Kirch. All of a sudden, I was overanalyzing my baby girl. She is 3 months old, and her head is still wobbly.....she can't roll over.....and does not lift her head up very much when on her tummy. Will she need physical therapy? Will they say she is delayed? The night before, I got myself all stressed out worrying about the appointment.

However, the developmental pediatricians we saw said that Ashlyn seems to be right on track. Yay!! They didn't seem to think her head control issues and lack of rolling is anything to be concerned with this early. Besides, it seems like Ashlyn is just a more socially motivated baby than a motor motivated baby. Braeden is the opposite....so advanced with his motor skills but slower when it comes to social and verbal milestones.

It was a full house in the patient room....resident, attending, med student, social worker, nurse....as well as Chris, Ashlyn, myself, Braeden, and our massive double stroller. Kirch does a great job though. They seem very efficient. I am glad that if something were wrong or ever comes up, they will be able to collaborate with PT/OT and social work as necessary.

We have new stats now too:
Weight: 13lbs 12oz
Height: 22 1/2 inches
Head Circumference: 42cm

There was one thing that the attending doctor noticed. Ashlyn still exhibits the asymmetrical tonic neck reflex, but at this point she is not too concerned about it. Many babies don't lose this reflex until around 6 months. It can cause developmental delays and indicate neurological problems if this reflex does not go away though.

Kirch sends out a report of your visit, which I absolutely love. I wish all doctors did that! We are still waiting for our copy, which will go right into Ashlyn's health binder.

We will go back for another appointment when Ashlyn is between 9-12 months to reevaluate her development. Hopefully, by that time, she will be sitting up, crawling, and maybe even walking!

For any other parents out there concerned about developmental issues, here is a great site that I love: Check it out. The developmental pediatricians recommended it at our appointment....but I already had it bookmarked!!

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!

Ashlyn's First ER Visit at 17 Days

I have a feeling that Ashlyn will become a regular at our pediatric ER.....Kind of goes with the VP Shunt territory....

So last night she vomited again. This time it was a huge amount....Chris was holding her and was covered from head to toe. It soaked through two shirts! Immediately, we knew that we need to get her checked out, and I was not about to eff around calling answering services that never respond. Chris's parents rushed over to pick up B and off we went.

In addition to the vomiting, Ashlyn had been lethargic all afternoon and the fluid along her shunt tract was increasing. I was almost convinced her shunt was malfunctioning....she had 3 of the warning signs!!

We arrived at the ER at 9:57 pm (according to Ashlyn's ankle band) and got triaged right in despite a line in the waiting room. We got a room and shortly a nurse was in to assess Ashlyn. Next, an NP came in to ask questions and did a quick assessment. As she was finishing up, a transport staff member came in to take her for a CT scan and X-ray. Wow, I thought, they are really making this easy on us! However, after we got back from radiology, that is when things started to slow down....

The NP told that she would page the neurosurgeon for a consult. That is around eleven.....Unfortunately, they did not answer their page for close to 4 hours! The attending ER doctor saw Ashlyn in the meantime and told us that the images looked good. In fact, her CT scan looked better than the last one done! Whew...so it's not a shunt malfunction!

So most likely it is just a stomach bug or reflux (I'm leaning towards the latter....makes sense to me). Relieved knowing this, we were so ready to leave since we were exhausted and uncomfortable in the cramped emergency room. Unfortunately, we had to wait (and wait and wait) for the neurosurgeon to check Ashlyn out.

Finally, the resident hottie neurosurgeon came in. He had been in surgery to remove a spinal tumor so I understood why we had to wait so long. He was thorough in assessing Ashlyn and going over the radiology results. He even told us what to keep an eye out for just in case. He told us we definitely did the right thing coming into the ER as she was exhibiting symptoms of shunt malfunction.

We had to wait a little longer to be discharged, but the attending doctor and our nurse were great about getting Ashlyn discharged ASAP. We ended up getting home around 5am....after 7 long hours in the ER.....Thankfully, the wonderful in-laws kept Braeden for the rest of the night and morning so Chris and I could rest.

I feel so blessed that Ashlyn's shunt is functioning properly and that she is already starting to perk up. She is much more alert today and not nearly as sleepy. And no more vomiting! I am so glad that she is fine, but I am realizing that with her health issues that these ER night trips might be more frequent than we expected....hopefully it won't be a regular thing (goodness knows I don't need more $100 ED copays), but I am starting to realize that even though she appears to be a completely normal baby most of the time, the shunt says otherwise. I read somewhere that by age 2 most babies need a shunt revision and that most shunts will malfunction at some point....Ashlyn has been through so much already, I hate to think that she will have to suffer through a lifetime of shunt issues. At least, she is given a strong chance at completely normal neurological development with her VP shunt.

Ashlyn's Update

So last night Ashlyn vomited. This is a big warning sign for babies with shunts so I was very concerned. She spits up quite a bit, but this time it was different....greater in quantity and more projectile in nature.

Immediately, I grab my cellphone....but I realize that upon discharge from the NICU, I never got a number to call in case of suspected shunt malfunction (among all the other things they failed to explain at discharge...Strong was awful with their discharge instructions!). I ended up calling my pediatrician office where I speak to a secretary who tells me the nurse is busy but to leave her a message on the answering machine. I leave a message and expect a call back ASAP. Two messages later....no reply.

I also made a call to the neurosurgeon's office (the only number I had for him) and got his secretary who was borderline incompetent but assured me that he would page the on-call neurologist. Again, no one called me back.

An hour after making the unsuccessful calls, I decide that I either have to take Ashlyn to the ER or watch her closely. Since she only vomited once and exhibited no further symptoms, Chris and I decided to stay home and keep a very close eye on her overnight. We already had a pediatrician appointment scheduled for this morning so we were comfortable waiting overnight.

At her pediatrician appointment, our doctor was satisfied that she did not throw up again and her fontanel remained soft. She does have some fluid accumulation that is increasing in quantity around the shunt valve that I was concerned about. She told me that she would contact our neurosurgeon and make sure this is expected. Good news is that Ashlyn's shunt is most likely operating completely normally.

Bad news is that she lost 1oz since her last appointment over one week ago....She is down to 9lbs (9lbs 7oz at birth, 9lbs 2oz on discharge from NICU, 9lbs 1oz at last visit). She eats every 2-3 hours, has tons of wet and poopy diapers, and appears to be thriving so I could not believe she is still losing weight! It is very frustrating and makes me feel like a bad mom....my supply is great and I thought breastfeeding was going wonderfully. Boy was I wrong....She does spit up a ton so I wonder if like Braeden she has an issue with acid reflux that will require medication.

Since Ashlyn's first week of life was a stressful one, our pediatrician expects that might play a role. So even though she is over 2 weeks and not back to her birth weight, she is giving us a break for now. We just need to go back on Monday for another weight check. If she continues to have problems then we will discuss formula supplementation.

In the meantime, we will increase the frequency of our feedings. And I plan on just using one breast at each feeding to assure that she receives sufficient quantity of hindmilk. Plus, I have a huge let-down reflex at first so this will eliminate the amount of spitting and sputtering she does before my flow settles down. At least that is my plan......