Ally's Dandy (Walker) Life: June 2014

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!

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.