June 18th, 2014- The Shunt

The alarm went off at 2 AM, but I didn't hear it.  Russell had to wake me up.  We had stayed up too late the night before (again), me mostly because Ally fell asleep in my arms and I didn't really want to go put her down.  Then I had things to get ready for my summer class, I needed to pack for the hospital...so I was up too late and incredibly tired.

I had tried to keep Ally up a lot the day before so she would sleep well during the night.  She was still sound asleep at 2 AM.  I got her bottle and got it into her mouth, and she drank the whole 2 oz. in 7 minutes, never opening her eyes.

The alarm went off again at 5:30; I heard it this time.  Russell had already gotten up and showered.  I got up and got ready to go, with no time to spare.  Last to be ready was Ally- we let her sleep as long as possible, then put her in the car seat right before it was time to leave.  She fussed a bit as I strapped her in, but she went back to sleep in the car.

Russell dropped us off at the entrance to surgery at the hospital.  I went in and got her registered, and then was directed to the waiting room.  Russell joined us in registration, and we waited together.  Ally was still asleep.

After about 20 minutes, they called us and a little boy back to pre-op.  Ally's pre-op area was obvious- it was the one with the crib. There was a peach baby hospital gown and sea foam green footie socks for her.  The nurse went through the standard questions with us, then told us to just leave her for now in the car seat since she was so peaceful.

Ally woke on her own a bit later, and we took her out of the seat.  She actually did really well for going as long as she did without eating and didn't fuss too much during the wait.  The nurse measured her head and did her height and weight (10 lbs, 6 oz!).  The anesthesiologist came in and talked to us about her anesthesia for the procedure.  A lady from child life services came in- she usually talks to children about their surgery, but of course Ally was too young to understand anything.  She did give us a quilt made by a lady in a local retirement home for children in the hospital!  What a great ministry idea!  Our nurse was really nice, we chatted about our older kids for quite awhile during the downtime.  She has 2 girls the same ages as Luke and Ben.

After we'd gotten her changed into her gown, first the resident neurosurgeon came in to speak with us and mark her head, and then the neurosurgeon himself.  I asked him, "So are you going to find out how smart my girl is today?"  He kind of chuckled and said, "We won't be going that deep.  It should be a relatively simple procedure, and shunts work really well for those that need them."

 Still asleep in the car seat

 Getting ready

Paci keeps me occupied

After the neurosurgeons left to prep, another nurse who had been behind them introduced herself and said she would be in the operating room with Ally.  She would be the one taking her back into surgery.  It was so hard to hand Ally over to her.  I got teary, but I never cried.  At that point, it seemed a little silly.  Of course none of this was pleasant, but it was necessary and that's all there was to it.  Plus, I had read the blog of friends with a special needs daughter from a few weeks before.  She had been at the same hospital having a procedure done, and had blogged these words: "Even though you'd think I'd be used to procedures and tests by now, it's still hard to let two nurses wheel your baby away in a bed into a room and have to go out in a waiting room away from her. I'm thankful, though, that her Heavenly Father is always with her, not hindered by policies and doors and confined to waiting areas. She is in His hands, even when she's not in mine. "  My friend Cristen is so wise and a great example of Christ to me!  You can read about their journey at www.waverlysjourney.blogspot.com

We went back to the waiting room to wait.  Russell played on his phone, and I worked on the week's assignment for my summer class.  The waiting area was crowded, so we actually sat in the deserted kids area.  After a little while another woman and a couple of kids joined us.  She got to talking to us after awhile- she was a retired elementary teacher so she shared some of her stories and teaching wisdom with us.  Yet another divine appointment!

The neurosurgeon called me on my cell phone when the surgery was over.  He said it had gone very smoothly and she was doing well and we should be able to see her shortly.  Sometimes they let parents back into recovery and sometimes they wait until they are up in the PICU, so he said to ask at the desk about when we would be able to see her.

The front desk told me they would call us when they got word.  We waited about an hour, so obviously they were waiting until she was upstairs to bring us back.  When the lady finally called our name, she took us to the elevator and told us to go to the PICU floor and ask for her.

When we got up to PICU, they told us she had just arrived and they would come and get us from the PICU waiting room when she was settled.  We waited for about 20 minutes, but I think they forgot we were out there, so I called back again and we were allowed back.

She looked so pitiful.  She was so pale from the anesthesia, and she would alternate between full-blown crying and pitiful little whimpers.  She had a heart shaped bandage on the back of the right side of her head and another on he tummy.  Both areas were yellowed due to the soap from surgery.  Soon after getting in there I was able to hold her and get her to calm down.  Russell left not long after we got to see her because he had to pick Luke up from VBS (both boys had stayed overnight with Russell's parents and his Dad took him to the church that morning).  We were able to get some Tylenol in her, and she had some pedialyte and kept it down.  (They said she had some in recovery but it came back up.)  As I held her and she slept her color came back, and next time she started crying I felt she may be hungry and probably ready for a bottle.  She downed it in no time!  A little later she was fussy again but it was too soon to give her more Tylenol, so they gave her some meds through her IV to help with the pain, and she drifted off to sleep again.

 After surgery in the PICU- can you see where they went in?  The orangish-yellow part of her head.

Bubba checking on me!

That afternoon Russell came by again- with Luke because he wanted to see her.  He quickly became bored, however, so they only stayed for about an hour.  Later Ally and I were napping together in the chair when our neurosurgeon stopped by to see her.  He seemed happy with her progress.  I had already noticed a difference- not in head size, but she now had a soft spot that pulsated slightly with her heartbeat if she was in the right position just like most babies!  I had never noticed a soft spot before on her, so the shunt was obviously working already!

Ally wanted to be held most of the day, but finally around 7 I was able to put her in the bed on her own without her crying.  She even started smiling at me and the nurses and was acting more like her happy self!  She is one resilient little girl!  She has had 3 bottles, wet several diapers, and is finally back in 'regular' clothes.  As long as she did okay overnight, she should be discharged the next day!

She did great through the night and the next day- you would never even know she had had surgery except for the scars!  She hasn't even really seemed to need any pain medicine since the day of the surgery.  She has been acting like her normal self, smiling and happy.  She was able to leave the hospital the next day around noon.  

 I am going home!

 See how much she's grown since coming home from the hospital?

Since we've been home she has acted normally.  Sometimes she seems to reach up to her head scar; I think it is starting to pull a little because we've noticed that we can see a bit more of the stitches than you could at first on the side of the bandage.  This is completely normal, and we should be able to take the plastic bandages off on Saturday and she can take baths as long as she is not submerged in water (it can be poured on her).  We have noticed the shunt itself sticking out some in her head, but it is not that noticeable and as she grows it should not stick out as much.

Thanks for all of your prayers, emails, texts, and comments!  I knew she would be okay, so my prayer has been that the shunt will be protected from infection, blockage, and failure that would result in more days like today.  We are looking forward to this Sunday being with our DW Alliance friends at the Nationals game with our family!  Ally has been cleared and able to travel, so she will be going with us. (Though she may not go to the game- we're going to wait and see on that, because Ben is staying home with my Dad already.  Even if she didn't just have surgery, it will be a long way to travel and we will be out in the hot sun, so it may not be ideal for any infant.)

Thanks for praying for our brave super girl!

June 13th, 2014- The Last Time

As usual, this post is a bit late, but real as always.

Ally's shunt surgery was scheduled for this past Wednesday.  However, the week before we got a call from the neurosurgeon's office that our neurosurgeon would be out of town on the 11th and they had rescheduled it for the next Wednesday, the 18th.  As a result of this, she will not be the first surgery of the day, but the second.  I was kind of bummed about that, because again she will not be able to eat for so many hours before the surgery.  As a result it is better if the surgery is earlier because Ally is sleeping really well at night, so she can sleep through most of her fast.  

Part of me was unhappy about moving the surgery because I want to get it over with, but the other part of me was glad because I feel like we get a little more time with our unshunted girl.  This week I keep thinking things like, "This is the last Friday she will have without a shunt."  "This is our last church visit without a shunt."

I know so many people would say, "Oh, a shunt is no big deal."  I know it's routine.  I know many people have them.  I know that people with them live very normal lives.  I know Ally needs it to live, and to help with her development.

That doesn't mean it's easy.

They're going into my baby's head.  That's scary- no matter how 'routine'.  She will be scarred forever- and as a baby, it will be VERY noticeable.  Not that I think we will treat her any differently (except we will be watching her for signs of shunt failure or infection), but others might.  And while I'm all for raising awareness of Dandy-Walker and hydrocephalus, I don't want to have to spend all my time explaining to others why there is a huge scar in my baby's head.  

I also wonder how she will handle it.  Lately she's been so smiley and happy.  Will she recover quickly and be smiley and happy again?  Will she have lots of soreness and discomfort?  How will she be a year from now?  Five years from now?  How will we break it to her every time she has to have another surgery?  Will she be scared?  I think Ally has a lot of strength in her, but in light of all of these questions is it any wonder I am savoring every 'last time'?  

I know that everything will be okay.  I know because we have met children with shunts.  One of our new friends updated on facebook, saying that her neurosurgeon said her son was 'just a normal little boy with a piece of plastic in him'.  I know because we have a great neurosurgeon with lots of experience.  And I know because we have a great God who has watched over us through all of this and will not leave us now.

Now for the EXCITING news.  I am currently working on getting together a list of reference families across the U.S.  These families will volunteer basic information to be posted on the Dandy-Walker Alliance website.  Then when families are newly diagnosed and *hopefully* find or are directed to the Alliance website, they will find at least one family nearby who is ready, willing, and able to talk with them about Dandy-Walker and their experiences, as well as help them with things such as Early Intervention, doctor referrals, etc. specifically for their state or area.  It will also have a list of blogs like this one so that as these families start 'googling' they will find real stories of what it's like to have a child with Dandy-Walker- and the hope and joy we have too.  I have had responses from about 35 states, and 2 from Canada and the UK!  I am really excited about what this could mean for DW families- so many families who have responded said they think it is a GREAT idea and may save many lives.

Step 2 is to get the medical community involved.  Once the reference family list is complete and up and running, I plan to send a letter with the brochure the Alliance has created and the state's reference family information to the many doctors that these families have said they would recommend to others.  The day of the last post I had left the college where I am an adjunct this summer and right next door is the Maternal Fetal Medicine office we used to frequent.  Who was walking to her car- but our doctor!  I know that was a divine appointment!  We hadn't seen her in a while so I caught her up on Ally and everything that had happened since her early arrival.  I also told her about the Alliance and the idea of getting reference families and hopefully getting the medical community involved.  She said that the problem was  that doctors often feel uncomfortable telling patients "we don't know what you should expect" as Dandy-Walker is such a wide-spectrum disorder.  On the flip side, often parents press doctors so much for information that they feel compelled to tell them something.  I'm so glad that our doctor was bold enough to tell us 'we don't know- but this is what we think, and this is how we can start to rule out possibilities.'  I think she will be a real benefit to our cause of informing the medical community- she's never afraid to tell it like it is!  I took Ally to visit with her and our point nurse today.  They all just swooned over her (and pointed out how good it was to see her in person instead of in a shadowy sonogram photo!).  And while there we gave them a few Alliance wristbands too!

Russell has also been given the go-ahead by the Alliance to hold a softball tournament, with the proceeds benefiting the Alliance.  He is very excited about it and we will let you know more as plans progress.  He does need some business sponsors so if you or someone you know might be interested please let us know!

Please pray for us Wednesday morning.  We will update when it's all over.  She will stay overnight at least one night and then we will hopefully be home if all goes well.

 Our happy 3 month old girl!

New photos from our family photoshoot!

 Doting, protective big brothers!

The family- thanks for your continued prayers!

May 22nd, 2014- The MRI

'Don't forget to set the alarm for 3 AM.'

Ally's MRI was scheduled for 7:30 AM the next morning.  Since she had to be sedated, she was not allowed to eat for 4 hours prior (and no formula 6 hours prior, so I had to make sure it was not a fortified bottle).  We wanted to make this as painless as possible, so instead of waiting on her we figured it would be easier just to get up at 3 and wake her to eat.  She's never really had a 'schedule' of napping and feedings since leaving the NICU so we didn't want to leave it up to her!

Russell got up with her and fed her, and she did great with it.  Ally had to be at the hospital an hour before she was scheduled, so she didn't have to go too long after that to go without eating.  I needed to be at school for testing, so Russell was the one who took her for the MRI.  I kept my phone with me all morning and he would text me updates.  

She was a bit fussy as they were leaving for the hospital (getting hungry again!) but otherwise not too bad.  They got there and got her checked in, then went up to the imaging floor.  After a brief wait, they took her back.  Russell was not allowed to go back with her.  He said he could see her through some windows before they sedated her- the technicians were all cooing over her!

He said it took about 30 minutes, and then he was with her when she was done.  He said as she came out of sedation she would get fussy and mad and could hardly wait to eat!  She did so great!  He texted updates to me most of the morning until she was out, ending with this picture, captioned "Hi Mommy!"  

My coworkers thought I was crazy for being at work, but it's a crazy time of year at school and besides, what good was I going to be in the waiting room versus being at work?  I was, however, a bit emotional that morning and went straight to the hospital after work.

We had found out about 2 days before that because of her age and prematurity she would actually have to stay overnight in the PICU due to the sedation.  They told us it was a common procedure amongst anaesthesiologists and was just a precaution.  We were bummed about that but knew they were just looking out for her best interests.

Russell stayed with her most of the day.  His Mom came and sat with her at one point when he had to go take care of a couple of things.  When I got there it was just Russell and Ally in the room.  She looked none the worse for wear, and her nurse just fawned over her.  It was my first experience with the PICU so it was a learning time for me, taking everything in and reading everything on the walls around the ward.

I stayed with her by myself while Russell went with the family to dinner.  Then I took the boys home for bed.  Russell called me not long after that from the hospital, saying that neurosurgery was planning to come by either that night or tomorrow before discharge to speak with us about the results.  I told him to please call me so I could be on speaker with them if I wasn't there when they came and he said he would.

The next day I got the boys to school/daycare and got myself to school.  I kept my phone with me all day but Russell never called.  I texted him at lunch and he said he was still at the hospital!  No one had come by yet and they weren't going to discharge Ally until we had spoken with them.  He was a bit frustrated because since he had stayed the night at the hospital he wanted to come home to shower and change clothes!

By the time the school day was over he was still there.  I went to pick up Luke from school since Russell was otherwise engaged.  In the process, my phone rang.  I stood in the hallway and spoke with our neurosurgeon.  He had been in surgery most of the day which was why he was delayed.  What he told me I didn't want to hear, but I'd been expecting.

Ally was officially diagnosed with hydrocephalus.  A shunt would be necessary.  The pediatrician working the PICU had told Russell he was pretty sure she had hydrocephalus just from feeling her head- he could tell the skull plates were a little bit farther apart than they should be, so we weren't surprised.  While it wasn't urgent (there had been talk of doing the surgery over the weekend!) it needed to be scheduled.  I spoke with him about the option of waiting (the next week was my last week of work, and the following week we were spending most of it at my parents' home almost 3 hours away, to visit with them and my grandmother who was up visiting from Florida, so I kind of wanted to wait until afterward if it was safe) because I didn't want her to suffer or have brain damage due to waiting too long, and he said he thought that would be fine.  If we notice any changes that indicate the fluid build up has become more severe (vomiting, lethargy, loss of appetite, bulging soft spot, unconsolable fussiness/crying) then we may need to take action a bit sooner, but he thought we would be fine to wait until the 2nd week in June.  I asked him about other types of surgery for hydrocephalus, and he said he thought a shunt would really be best for her.  I also asked about specialized shunts (programmable or magnetic) and he said traditional would be all she would need.

So there we have it.  On June 11th at 8:15 AM our girl has the first of many surgeries through her lifetime.  I read a statistic somewhere that of all of the 'implants' that can be done surgically (stints, pacemakers, etc.) shunts have the highest failure rate of all of them.  Many people with shunts have dozens of surgeries in their lifetime.  Our prayer now is that not only will this first surgery go well and she recover quickly, but that she will be protected from infections, failures, and blockages that will necessitate surgery more frequently.  Thanks for your prayers!  More exciting updates soon! 

May 17th, 2014- The Realization & The Run

I was getting excited for the coming weekend- to see my family again, and to do Carter's Run together.  Thursday night after the boys were in bed I was on Facebook, browsing my newsfeed.  I saw a post from someone in our Dandy Walker parents group (a closed group) where they had posted pictures of their child and how blessed they were by them.  (I believe it was a newborn, we did the same on the group page when Ally was born to introduce her to the 'Dandy-Walker world.') 

What struck me, however, was something that I've seen many MANY parents in this group post, but for some reason at that time it hit me like a ton of bricks: 'I'm so glad I didn't listen to the doctors when they recommended I terminate.'

I'd had enough.  It was the final straw.  I was so SICK of seeing parents post similar statements on Facebook, underneath pictures and videos of their smiling children.  Doctors are recommending termination of dandy walker pregnancies across the country, telling parents their children will be 'vegetables' or have 'no quality of life'.  Obviously, if a person was missing a part of their brain you would think that they would have some severe issues- myself, not being from a healthcare or medical background, might have thought before this that if part of your brain was missing you would not be able to even survive.  However, this could not be further from the truth- and these are DOCTORS telling this to parents.  So many Dandy-Walker kids defy their diagnosis daily and grow up to be well-functioning adults.  Of course, every case it is different, and some are more severe than others (especially if paired with a genetic abnormality, which Ally does not have), as we were told early on in Ally's diagnosis and have seen firsthand since- but 'no quality of life'?  What a lie!  It made me sad- these parents on Facebook had chosen life, but how many more had been terminated that could have had fairly normal (if not completely normal) lives?

I sent a message to Eric Cole, the founder of the Dandy-Walker Alliance, with my frustration and outrage.  He responded that this was exactly why the Alliance was formed, (I finally understood why the car magnet says "A life worth saving" on it) and would I happen to be attending Carter's Run since I was in the same state?  When I told him we would, he said to come to the Dandy-Walker Alliance tent to meet him and some of the Dandy-Walker kids. I was excited to realize that for the first time I was going to get to meet other kids living with Dandy-Walker and talk with their parents.  That night I also sent a message to Carter's Mom, Lisa, via the Carter's Run Facebook page to let her know we were going to be there and that we would like to meet them, but we knew they would probably be really busy during the event.

Russell has been gung-ho about wanting to raise money for the Alliance to use for its projects.  But that is the furthest thing from my mind now.  Not to sound completely pessimistic, but I don't believe we will ever find a 'cure' for Dandy-Walker.  I could be wrong, but if there ever is one I don't believe it will be found in my lifetime, or even Ally's.  How do you 'cure' a developing fetus from not having a fully developed brain?  How could a brain transplant be possible- or even a partial brain transplant (of the cerebellum)?  Maybe one day this will be possible, but for now I don't have a lot of enthusiasm about the possibility.

My mission is education- I am an educator by profession, after all.  People have to know what Dandy-Walker is, and that it is NOT a death sentence, or a 'no quality of life' sentence.  And while a lot of that can be done by parents of Dandy-Walker children (and Dandy-Walker adults) with the help of the Alliance, my belief is a lot of it must also come from within the medical community itself.

As mentioned in some of our earliest posts, our doctor at Maternal Fetal Medicine was excellent.  She did not sugarcoat anything, but she also didn't leave us without hope.  And she helped us systematically eliminate possibilities (the infection, genetic abnormalities) with testing (first blood tests, then the amniocentesis with SNP array, along with a fetal echocardiogram and fetal MRI) but always gave us all the options with full details about each.  Termination was only brought up twice- once with the initial consult with the genetic counselor where she gave that as an option and we said no way (and she never brought it up again) and then with our doctor when she told us that if any of our testing showed an issue with Ally that would cause her not to survive, (or survive for long, such as Trisomy 13 or 18) she would do everything to make sure I was fully protected during the birth process and termination may be an option with that.  It was NEVER pushed on us, and we were NEVER made to feel we were in a hopeless situation.  In fact, they directed us to the Alliance and to local support groups for special needs families as well.  They always made sure we were fully informed and were open to questions anytime.  EVERY PARENT needs to have the same care and concern we did- with ACCURATE information about their child's diagnosis and condition.

My hope is to get in touch with our doctor and ask her to help us figure out how to get the word out to the medical community about the truth of Dandy-Walker.  I'm really not sure what that looks like, but I'm hoping she can help out and give me some ideas.  The Alliance has put together a great brochure for genetic counselors and doctors to give to families when they first get the diagnosis that is full of good information and encouragement and is very easy to understand.  If we can get that out across the country to the people that need it- doctors and new DW families- that will go a long way in stopping unnecssary terminations of DW pregnancies.  Educating the medical community is my first and ultimate goal.

My second goal is to partner with the Alliance to create even more resources for families, especially newly diagnosed families.  I am hoping to find a few 'point families' in every state (with the help of the Facebook group) that the Alliance and doctors can list and provide for new families so they have someone close by to get in touch with and talk with when necessary and would be familiar with doctors and services in their state.  Another Mom on the Dandy-Walker parents group was asking for the links to all the blogs like mine to link to hers- I'm hoping we can actually ask all families with blogs to send the links to the Alliance so they can have a whole page with them for families to have a reference for life with Dandy-Walker and read messages of hope and encouragement (hopefully, also listed by state). 

I was greatly encouraged Saturday at Carter's Run.  My family had a great time at the event.  Everyone except Dad, Luke, and my youngest nephew walked the 5K (well, Ally and Ben were pushed) and my brother even ran part of it.  Afterward Luke did the 1K fun run with me (whining almost the whole way, but he did it).  When all the racing was over, the boys went to watch the magician at the fun fest and I went with Ally to the Alliance tent to meet Eric Cole, his wife Andrea, and their son Ryan, age 9, who wears glasses and a huge smile and uses the aid of a service dog.  We also met Noah, age 2, who has a shunt but otherwise has developed normally and on schedule; Shawn, age 6, who walks with the aid of braces and who thought Ally was SO cute :-), and Carissa, age 24, who was shunted at 10 (and has never had a revision!) and lives under her mother's care.  I really enjoyed hearing from the other families about their children and the journey they have been on, and being able to get advice from them as Ally has barely started her own journey!  I unfortunately did not get a lot of pictures while at the tent, but here are some pictures from our day.  (Sorry, some of them are sideways and I can't get them to turn!)

 Mom, Luke, and my nephew warming up.

 Ben is ready to race!

 My brother and sister-in-law warming up

Waiting to start!

 The Great Zucchini!

 The 1K Fun Run...at least he looks happy at the finish!

Can I tell you the best part of the run?  I was pushing Ally the last leg of the course.  There were 2 women walking a few paces in front of me.  The course wound through a neighborhood and came out onto a street with some shops.  A man was going into a nearby building and I guess saw all the people walking and the course being protected by local police and asked the 2 women what cause were we walking for?  They replied, "For Dandy-Walker syndrome."  He asked what that was, and they couldn't really give him an answer.  I slowed down and said I could tell him about it.  I explained in about 20 seconds the best I could- that Dandy-Walker is a brain malformation where part of the brain is missing in the back, the cerebellum.  Often because of this gap it results in hydrocephalus.  Children with Dandy-Walker may show no signs of having it, or may have developmental delays or issues with motor skills and mental or learning issues, among other things; it is a large spectrum of possibilities.  He said, "Thanks, I'll have to look it up at home."  I told him to go to www.dandy-walker.org, and continued down the course.

And that, my friends, was well worth 3.1 miles.  

Ally and I finished together a few minutes later, running the last bit, in about 45 minutes.  The culmination of the beginning of a journey for me, as Ally continues hers.

May 12th, 2014- The Freak-Out

The very night that I posted the last update, I had a very scary mom-moment.  Ally had just finished her bath and she was laying on her towel on the floor.  I was drying her off, and her head was turned to the side, looking toward the wall.  And I saw it.

The hydrocephalus.

I could see the enlargement of her head.  I could see it going up and out the back.  It was nothing drastic, but it was like my eyes were opened and I could see the issue.

Maybe.  Was I just being dramatic?  Of the two of us, Russell is the paranoid one when it comes to our kids getting hurt (physically or otherwise), not me.  Maybe I just thought I saw something.  The only thing I did know was that I didn't know, but it made me feel that we were definitely on the road to a shunt as the resident neurosurgeon had suggested at our last visit, which made me sad for the journey ahead of Ally.  While hydrocephalus can be easily controlled, it can also be very complicated.  Shunts can get blocked or infected, and after awhile in children they are outgrown.  It meant a number of surgeries throughout her life.

I just wept.  With all of the great news we'd gotten on Ally over the short month and a half of her life, I'd become hopeful maybe she wouldn't need the shunt.  Now I didn't see any hope of that.

I was also scared.  The neurosurgeon had put in an order for an MRI, but we had heard nothing about when that would be scheduled.  If I really DID see head expansion, I wanted her to be seen as soon as possible.  I did not think she was in any kind of immediate danger, (no soft spot bulging or anything) but if I could see a difference then it was probably significant.

The very next morning as soon as I got to school I called neurosurgery and told them my concerns.  I asked if she could be seen by the neurosurgeon.  After calling back after talking with the doctor, she said that they really needed the MRI imaging to tell anything, and put in an urgent request to get it scheduled.  (When I told her I wasn't really sure about whether her head was actually bigger and that I might be seeing things, she said, "No, we know you always listen to the Mama.  They have instincts about these things."  Right on sister!)  She asked if I'd measured her head and I said no (not that I would have anything to compare it to, I hadn't written down her last measurement or had access to it).  They also asked if she was having other symptoms (vomiting, lethargy, loss of appetite, change in diapers, etc.) and I said no.  The hospital called later to say they'd scheduled her MRI for the 22nd.  I took down all the information, but in my mind I was thinking "That's almost a month away!"  She had her 2 month check-up on the 6th, so I decided to keep an eye on her and see what our pediatrician said.

I did manage to dial back the paranoia; usually I freak out and then I'm ok (or vice versa) when it comes to things like this where I get really scared or stressed.  Since that day, we've had some more updates that have calmed me more.

On May 1st Ally had her first Early Intervention appointment with the physical therapist and an educator from Easter Seals.  Since it was scheduled in the middle of the day I was unable to make it, so Russell took her alone.  He said she did really great!  Being a preemie she has a chronological age of 2 months, and an adjusted age of almost 3 weeks.  Her physical development is on track for a 2 month old!  So depending on which age you are looking at (chronological or adjusted) she is either on schedule or ahead of schedule for physical development milestones!  While this is great news, delays can start anytime so we will continue to keep a close eye on her and continue with Early Intervention in case she does have a need for therapy in the future.  One of her best milestones is her smiling at us and her brothers.  She usually does it really fast and we haven't gotten a picture yet, so we will be working on that for future posts :-)

May 6th was her 2 month check up.  I was only able to catch the tail end of the appointment, but I was glad I got to speak with our pediatrician.  She is now 8 lbs, 10 oz, so she has officially doubled in size since her birth!  (I forgot to mention in the last post that she was officially out of preemie clothes and in newborn/0-3 month clothes.  I LOVE all the girlie clothes and dresses and headbands we have for her!)  This puts her barely on the charts- first percentile for weight, second percentile for height.  Her head, of course, with the hydrocephalus, is at the 39th percentile.  I wasn't there for the actual measurement, but our pediatrician said that while her head has grown (which, of course, is to be expected) it is still in the same percentile as last month, so the growth is not exponential.  She made me feel a lot better because if she had been concerned I was going to ask her to 'stretch some muscle' and move up the date of her MRI, but she seemed unconcerned about the later scheduling.  One thing that was frustrating was I had requested that neurosurgery send her imaging to our pediatrician, and that had not been done.  Guess I will need to be reminding them of that next time!

May is one of my all-time favorite months of the year.  School is winding down, weather is awesome, we celebrate both Luke and Ben's birthdays (Birthday party extravaganza weekend!  They are now officially 5 and 2 years old!), and now it is Dandy-Walker and Hydrocephalus awareness month.  This must be 'proclaimed' in each state by the governor.  Virginia has had it in the past, but apparently it is a yearly request, which I did not know.  I put in Virginia's request April 26th, but haven't heard anything yet (not surprisingly, since it was so late).  Though it is mid-May, it could still happen!  I saw South Carolina, New Jersey, and Nevada just got theirs recently.  However, it is still unofficially Dandy-Walker Awareness month, so please spread awareness in your school, work, or church by going to this website and printing the poster and displaying it.  http://www.amywaggs.com/CartersRun/wp-content/uploads/2013/10/Dandy-Walker-Flyer-20141.pdf
You could also go to the Dandy-Walker Alliance website to learn a bit more: www.dandy-walker.org and request a wristband or car magnet from this website: http://www.dandy-walker.org/magnet-request/
You could also join us for Carter's Run this weekend www.cartersrun.org or the Dandy-Walker Alliance Day at the Washington Nationals in June.

 The picture above is a common slogan from the Dandy-Walker Alliance.  What isn't shown is the 2nd part of the tag line, which says,

"That's a lot when your child is the 1."

Never has that been more true than now.

Please continue to pray for decisions for next school year for our family.  We have had some questions answered, but still have a lot to figure out.  And of course pray for Ally, especially on the 22nd for her MRI (she has to be sedated for it :-( ).  I will have a few more updates before the end of the month, especially after this weekend at Carter's Run and her MRI next week.

April 23rd, 2014- The Possibilities

Sorry for the delay in updates- since going back to work I haven't had as much time to update the blog as I would like.  Full time work and full time Mommy doesn't leave a lot of time for other things!

First, returning to work.  Today is only my 8th day back, even though I went back on the 9th.  My first two weeks were 3 day weeks (to help ease back in to the swing of things) and then this week is a 4 day week coming off spring break (which was Thursday - Monday over Easter weekend).  It was hard to have to get up early again and get everyone where they needed to be on time, but we made it work, and I only have 34 school days to return for before the end of the school year (I'm not counting or anything...)  Each day has gotten somewhat easier and I enjoy the 'break' from home, though I miss my little ones too.  We are still trying to figure out what to do when the summer's over, so again, prayers in this area would be very much appreciated.

The Friday before I went back Ally had her 1 month check up with the pediatrician.  Overall that went well; she couldn't get her immunization because of the timing of when she got the first one in the NICU, but the doctor said that was okay, she could get it at her 2 month appointment with the others she would receive.  Also, her weight was terrific- 6 lbs 8.5 oz!  She is really growing and gaining weight fast so I am really pleased with that.  She still takes bottles of pumped breastmilk with 1/2 tsp of formula mixed in to take it to 22 calories, and I guess it is really making a difference!  The doctor also wanted her started on a liquid vitamin, which is mixed into her bottle once a day.  I'm looking forward to her next check-up in early May to see what her weight is and how the doctor feels she's doing overall.  The other day I got on our bathroom scale with her, then without her, (as accurate as that is, I know) and it showed a difference of 8 lbs!  My hope is that at her next appointment she will be at least 9 lbs, which means she would have more than doubled in weight since her birth.

The day before I went back to work Ally had a follow-up appointment with neurosurgery.  The doctor was not available, so we saw the resident that we had seen for our consultation when I was still pregnant with her back in February.  He looked at her most recent head sonogram (ordered by the neurosurgeon at our last appointment and done about a week later) and told us some not so great news: the possibility of a shunt is looking more likely.  I didn't see the images myself (which next time I intend to ask them to show me the comparison between images so I can see for myself what they see) and this was a different person, so part of me wonders (and is hoping) that maybe the doctor will tell us something different since at our first appointment he seemed pretty optimistic about her condition.  The resident has ordered an MRI to get a better idea and better images, but we still don't have a date for that yet.  It has to be coordinated with several people, because infants have to be sedated for an MRI so they will be still and they can get what they need (even if a baby is asleep, the machine can be loud and it would probably startle them awake).  I was really disappointed in this news, but we always knew it was a possibility, just one I had become hopeful that we could avoid.  Again, prayers in regards to this would be appreciated.

On Monday we had an appointment with Early Intervention.  This was a preliminary visit to get to know the program and to determine her eligibility.  Because of Ally's diagnosis of Dandy Walker we figured she would be eligible, but everyone has to go through the screening process, and plus we are new to all of this so it was good to find out more about their services.  Right now Ally's 7 weeks old, so a lot of the questions they asked were hard to answer and almost didn't apply to her (Are there certain places she enjoys?  She's a baby, she hardly knows where she is!), but we answered them as best we could.  They determined she was eligible, so in the future she will be eligible for any services needed through them; speech therapy, physical therapy, etc.  She can stay in the program until her third birthday, or until she transitions into a program through the public school system, whichever comes first.  Public school pre-k programs can take students as young as 2 (Ally would be 2 and a half if she went this early) if they have issues like developmental delays, are on the autism spectrum, etc.  We LOVE the preschool Luke attends and already have Ben on the list for 2016 - 2017 before he would start Kindergarten.  We would love for Ally to go there too but realize that she may be unable to attend this preschool depending on her development at the time and a public school pre-k may be the best thing for her.

As for our home life, things seem to be calming down.  We had delicious meals delivered to us every other day for a month (THANK YOU to our wonderful friends who did this for us) and are just now finishing up the leftovers, which means we will have to start cooking and buying meat at the grocery store again soon.  Ben has actually somewhat transitioned to the big boy bed (though last night was somewhat questionable, but the other nights he has done pretty well) so we can soon move Ally into her room and the crib anytime we feel she is ready.  She started taking tub baths and LOVES them (she would scream her head off during her sponge baths, but she enjoys having the water poured on her and cries when she has to get out and dry off!).  Luke and Ben are doting big brothers, and Ben especially has transitioned well.  He enjoys being face to face with her when she is on the floor (he practically lays on top of her, which we have to watch and make sure he doesn't squish her) and kisses her often ('kiss kiss').  He even tries to be helpful when she cries by saying "It's ok Ally" (except in his toddlerish way which is super cute) and occasionally trying to give her her paci.  Luke often gives her kisses too and is helpful when we ask him for help.  Ally is lucky to have such loving, protective big brothers.  We hope to make it through the last month of school for both Luke and I, and then enjoy our summer together with swimming, library storytime, and playdates with friends.  And maybe an impromptu vacation and trips to see family thrown in there as well.

We are also excited to get more involved in the Dandy-Walker Alliance events and supporting them.  May 17th we will be walking (wish I could run it, but I'm not in shape- maybe next year) the Carter's Run for Dandy-Walker 5k with my family, and Luke will be doing the 1K kids fun run.  Afterwards we will be hanging out at the family fun festival.  And it was just announced that June 22nd is Dandy-Walker Alliance day at Nationals Park, so $6 of your ticket cost goes to the alliance.  We plan on purchasing our tickets very soon and would love for more friends and family to join us!  We look forward to getting to meet other DW families at these events and learning from their experiences as well.

Thanks for your prayers and support.  Please keep them coming.  We need them more than we can describe here, especially as summer approaches and goes by SO fast.  Hopefully summer will also afford us a chance to get to see many of you who we do not regularly get to see, and you can meet Ally in person for yourselves and we can all catch up!

April 5th, 2014- The Newborn Pictures

Courtesy of Portrait Innovations- for your viewing pleasure!  (not exactly a 'new' newborn but she's small enough you'd never know!)

 Still tired...

 The winner- and the outfit we brought her home in!

 The whimsical photo...love it!!!

 The ladybug!

We have one of all 3 of our kids like this in white frames.

We get pictures done every year at Portrait Innovations and this time had the best photographer we've ever had...I'm requesting her when we go back for family/boy individual/kid group photos next month.  We've had so many people- family, friends at church, and complete strangers- tell us how perfect she is.  Though we know no one is perfect, including our girl, and the circumstances surrounding her diagnosis and early birth have made things far from perfect, I keep trying to remember that our God is good and He has richly blessed us with not only our Ally, but with many outcomes that could have been far worse thus far than they have been.  He will get us through- whatever lies ahead.  For now, in this post we celebrate with you in Ally's birth and the life the Lord has prepared for her.