Thursday, February 28, 2013

Camera Roll


Happy feet.

Ready for church in a sweater dress and kitty tights.

New shoes! Love them both!
Got my vest on, ready to venture out of the house for the first time post surgery. Off to buy a new car seat!
Rocking a viking hat while cruising the living room.

Swelling going down every day!!

Wednesday, February 27, 2013

Ava's Surgery

Get ready, this may be an emotional rollercoaster ride. At least it is for me. It's not well written, switches from past to present tense and back, but I just can't seem to find a way to make this seamless.

The hard part is now behind us. Thank the Lord. As the Cranio community calls it, we are "on the other side". I think the only way to get through knowing your baby will be having major surgery, is to focus on the positive, lean on loved ones, have faith and get informed.

Ava's surgery so quickly arrived after the holidays were over. It was so nice to be distracted from what was looming over our heads for a short period of time, surrounded by family, friends, and holiday cheer. Once that had passed, I found myself emerged in research and planning. Packing lists were started, discussions with other parents of Cranio kids were had. I was feeling a strange mixture of anxiety and restlessness. Was what we had ahead scary? Yes. But it was the right thing to do to ensure Ava has a healthy future. Plus, I always knew she'd be handed over to experts; caring, experienced, talented people who knew exactly what they were doing.
I just wanted it to be over.

That's where we are today. Ava's surgery was two weeks ago today. We've been home from the hospital for 11 days now. Other than some swelling and an incision, Little Miss is exactly who she was before. Only now she's my rockstar super baby. She handled this situation beautifully.

I'm so glad that this has all happened while Ava is young and won't remember the pain and the healing. I'm so glad she won't remember being walked away from her parents by strangers, through a set of double doors. I don’t think Wynston and I could have hugged tighter just then. THAT is a moment that I'll never forget. It's one of "those" moments in your life. A snapshot that is forever tattooed onto my soul. But several hours later, I experienced another one of those moments, another shapshot. And that one was with me and Wynston standing by her bed in recovery, as she laid there bandaged and pale. She held up one little pointer finger at me. Her “one”. I reached down, and touched my finger to hers, and knew we were all going to be okay.

So, here's the breakdown of our 4 day visit to the St. Louis Children's Hospital...a place where miracles are happening every day.

Tuesday, 2/12/13 - We work till 3 pm, pack up the car, gather family, drop off the dogs with my brother and his family, and head to St. Louis. I think I've packed enough to furnish a small summer cabin. Haha. I'm a typical overpacker. But we were going to be 3 1/2 hours from home and I wanted to have everything we would need. We arrive that evening at Wynston's sister's house and spend the nighttime hours playing with Ava, me eating my feelings via 2 bowls of dinner, and bathing Ava. I sleep intermittently. Maybe a total of 3 or 4 hours.

Wednesday, 2/13/13 - It's the day. The one I've been marking off and counting down to on our laundry room calendar. I wake at 4:30, a good 30 minutes before I need to. We all get ready, and our 3 car brigade heads to the hospital. We have a 7 am check-in time. We arrive at Same Day Surgery and find we have a private waiting area ready with our name on it. We quickly get called back to Pre-Op. Wynston and I take our Little Miss back, and do the pre-op thing. Ava is playing in her cute little gown in the hospital crib, when she loses her balances and sits down hard. Her tiny two bottom teeth bite her tongue. This is a moment I've been waiting for, and of course, it happens today. Ava is fine, we spend a while meeting with doctors, saying goodbye to grandparents and playing in the playroom next door. There are so many other parents there with their little ones running around playing. Most of us have the same tight, "not gonna be afraid" looks on our faces. We are just reveling in the fun the kids are having. Soon it is time for Ava to head to surgery. See above for that moment. We hugged, kissed, and fought back tears. Wynston hugged me tight as they walked away, holding me together in more ways than one.
We get calls every 1 1/2 hours with updates. Doctors come out to chat a couple times with more updates. Wynston's sisters join us. We play online, read, eat chocolate, nap and watch one family after another get to leave with a fixed up little one. Soon none of the families that began the day with us are left. New families have arrived, most of them have left as well. At 3:30 in the afternoon, we finally get the word that Ava is in Recovery and ready to see Mom and Dad. Wynston and I hold hands on our way back there. Ava looks so peaceful as she lay there resting. She was pale and bandaged, but she was awake and very obviously recognizing us. We were given an envelope of her hair; it was what they had to cut before surgery.They let us have it to save as her first haircut. *tear*
That evening we were moved up to the Pediatric Intensive Care Unit (PICU).
Surprisingly, we were allowed 4 guests at a time in her room. So we all took turns that evening visiting with her. Soon Ava took her first bottle and drank the whole thing. We had wonderful nurses. I sent Wynston to his sister's that evening for some rest. He was so drained, and would need his energy. I was running on some sort of "mommy energy high"...the same thing that hits when you are in the hospital with your baby after you deliver them. We fought some nausea that evening, and the night nurse and I kept her in good hands until Ava finally got to rest.

Pre-Op. Wearing beautiful jammies sent to us by Cranio Care Bears.

Thursday, 2/14/13 - Happy First Valentine's Day Little Miss. Her little Valentine's Day bib I had made for her is snapped on and she is given cuddly stuffed animals to celebrate. We stayed in PICU until that afternoon. As we waited on a regular room on the 12th floor, I was so happy to watch one tube after another get removed. We learned this day that our doctors perform their rounds very early in the mornings. :) Each day of our stay we see the Neuro team and the Plastics team. These guys, along with most of our nurses, all look so young. Probably my age or not much older.
But they are all so compassionate...they look Ava and her charts over with such care and expertise. They answer all my questions, even if it is 5:30 am and I probably make very little sense. Ava's prayer chain was placed on each crib she stayed in.

My Little Valentine. Bib made by a local talented lady.
I go find the Ronald McDonald suite on the 5th Floor. It is a family getaway. It has computers and tv's for distraction and entertainment, a kitchen full of goodies, laundry stocked with supplies, and nice spacious showers available. I look around, hand wash Ava's fox she sleeps with, and head back. The nice lady that was volunteering in the McDonald suite soon arrives at our PICU room, with a rolling cart of goodies. All gifts to choose from, provided by the Ambassadors. I still need to figure out what that is. I find black eye masks, take one and thank them for their thoughtfulness. This eye mask and some ear plugs we'd brought were my saving grace when it came time to nap.
By early evening we are settled into our own room way up on the 12th floor.
We are roommate-less, so there's room to spread out and relax. Ava is down to two IV's (one in each foot), so she has more freedom to spread out as well. Family visits; Wynston and I are able to retreat to the cafeteria for some food. We have been gifted by many of our friends with care packages full of treats and goodies, which are being enjoyed, but we found that taking a half hour or so a day to go down and clear our heads really helps.
Plus Wynston’s sister and her husband join us each night and when that brother-in-law is around, you never know where the conversation will turn.
The entertainment was nice.
As nighttime approaches, Ava's eyes begin to swell shut. We knew this would happen, and that it would be the worst of our stay. We had been warned by doctors, nurses and other parents. Family is there to witness her frustration. She struggles with fussiness for about 30 minutes before we get her to sleep. It was very hard. Once we get her calm and resting, and family leaves to go rest themselves, I find myself leaning on her crib and actually crying for the first time since we watched her get walked to surgery. I'm crying out of frustration. Wynston hears and asks what's wrong. All I can tell him is how unfair it is for Ava to go through this, and how much I hate that for her. She's just an innocent child. I know the nurse will be coming shortly with another round of medicine, so I pull it together and am thankful Ava is resting.
One thing that is soo hard in the hospital is those rounds of medications.
Each round of medicine is followed by a flush; so you'll do a 15 minute IV drip, followed by a flush, followed by a 30 minute IV drip, followed by another flush. It feels like the hours pass only by the beep of the monitors. Then vitals need to be collected every 4 hours. Plus pain medicine as needed. It seems like the only time during the night when you can get uninterrupted sleep is from 4 am on. We are lucky we don't have a roommate that night so that Wynston and I can each have a chair to sleep in. They unfold into long beds. But the chairs are next to the windows, out of the way of IV cords and monitors. The windows let in a lot of that cold February air.

Friday, 2/15/13 - At 5:30 am the Plastics team arrives in our room. I wake to the sound of them visiting with Wynston over by Ava's crib. Though the doctors seemed surprised that Ava's eyes are swollen shut, they are telling us that she looks good, Dr. Patel will be by shortly to remove her bandage and drain, and that we should be able to be released tomorrow morning. I was shocked. We were prepared to stay until Sunday or Monday. Ava still had her bandage on for goodness sake! By 7:30 am, when Dr. Patel arrived, Ava's eyes  were opening back up. Wynston and I watched anxiously as he removed her bandage. I'm honestly not sure what I expected. Her head looked so good! I mean, baby girl had an incision from one ear to the other, but I think that they did a good job of not cutting too much of her hair off before the surgery. Ava's swelling seemed pretty minimal, thanks to the steroids she was receiving to help keep that in check. Her eyes never blacked, just bruised to a lavender shade. Dr. Patel had obviously been told that I very nervously received the discharge news. He told us that we could leave the next day, but that there was no rush and we could stay till we felt comfortable. Family arrived to see Little Miss without her bandage.

Ava's incision.

Eyes mostly swollen, crazy hair, but still enjoying some gifts sent Ava's way.

We just couldn't get over how good she looked. As her eyes continued to open, she returned to her old self. Soon it was all we could do to keep her happy in that little crib. I wonder how many laps of the 12th floor we all made with her. Friday we received a roommate. An 11 year old boy, with nice parents. Having a roommate wasn't as hard as I expected. We just tried to stay quiet so he could rest. Ava had one IV removed from her foot that day, and accidentally removed the other herself. She wasn't done with her IV meds yet though, so we had to have that one put back in. Ava and I were resting together in a chair when the IV team arrived. Everyone else was out resting in the waiting room. My mom arrived in our room about halfway through. Let's just say it was hard. Local anesthesia was not provided because it would cause her veins to shrink. Luckily it didn't take too long.
That night our family left to rest at Wynston's sister’s, we watched Lion King, and Wynston and I shared one of those strange chair beds. It was crowded, but our little family was all together and we'd made the decision to head home the next day after all. Over the course of that Friday I found myself feeling so confident in Ava's incision and activity level. I knew we could safely head home.

Our Little Miss tucked in tight with her fox.

Saturday, 2/16/13 - On Saturday's the Neuro and Plastics teams don't arrive quite so early. I think we saw them all after 7:30 am, which was a first.
We happily told them we felt good about leaving that day after all. Ava's incision still looked great, her swelling was progressing. We even got her some yogurt and applesauce that day since she was quickly growing tired of a liquid diet. I asked the nurse to give Ava a bath before we left, and closely watched as she carefully washed Ava's hair. The doctors all assured me that Ava's outside stitches were just "superficial"; that there was a whole other layer of "strength stitches" underneath. We could pretty much do no harm to her precious little head. We started getting things together, gathering balloons, flowers and stuffed animals all so thoughtfully sent to Ava. We were out of there by 1 pm.
I was VERY nervous about the long car ride home and how Ava would tolerate that. We stopped in Rolla to eat a late lunch at Steak n Shake and filled Ava's prescriptions.
Ava slept pretty much the whole way to Rolla, and the whole way home after lunch.

A happy girl at lunch on the way home. Still swollen.
Like I've said before, she's a champ. We made a quick stop to see Poppy and my brother and his family, get Lily (our dog) and headed on home, where Grandpa Randy was also anxiously waiting to see Ava. Both of our dad's had to return home a day or two after Ava's surgery. They were both planning on returning to St. Louis over the weekend, but I guess that Ava just wanted to come see them instead. Must be why she did so well and got released early. That girl's got some amazing grandparents. :) That first evening home, we found Ava back on the floor, crawling around like nothing had happened. Ava and I slept in the front room that night.

And that's it.

There's more to the story, but some parts we'll keep to ourselves. Special memories and such. Ava has done so well at home. She's cruising around the living room, crawling all over the place, back to eating solids, growing like a weed, probably starting to cut some top teeth. She returned to her own crib her second night home. We even went out and purchased her a bigger, convertible car seat. I'm really hoping this one is extra comfortable because we have many more trips back to St. Louis ahead of us.
At this point, two weeks after surgery, Ava's swelling looks great. I think it got worse before it got better. Maybe from coming off the steroids, and not really being able to have her sleep elevated each night (we try, but gravity usually wins that battle). Ava's sleep pattern has been off since we returned home, but we expected that and it seems to be improving daily.
She also had her eyes swell back shut for a few hours one morning. But today she looks and acts great. Her stitches look to be healing correctly and should be dissolving soon.

Babies are amazing. Very resilient.

Friday, February 22, 2013

Land of the Lost

I've been wracking my brain lately over what and how to write up my blog post on our surgery experience. I'm torn.

We tend to be private, and keep details pretty contained to a tight inner circle until we are ready to share, if that ever happens. But I'm truly afraid if I don't write it down, I'll forget. And I don't want to forget. I also want some other scared, angry, confused mommy (or daddy) like me to find our story and find some helpful information. To deal with a difficult situation, I research, research and research...and sometimes cry in the bathroom, haha. But I mainly try to prepare myself via knowledge. So if I can give someone some insight into what to expect, then it'll all be okay. I'm working on finding the happy medium of "not too much, not too little". Maybe I'll find that place soon.

I've gone back to work this week, so maybe today, tomorrow or sometime this weekend I can sit down with a glass of wine and a snoozing baby and turn the jumbled mess of memories and emotions in my mind into something beautiful that I can look back on and appreciate. Maybe. Last night, I told Wynston I'm just ready for life to feel normal again. And I asked him when that day would come. We're not sure yet.

So, I didn't come here today to bring everyone down on a wintery Friday morning. I really just came to stop in, say sorry for the post delays, and that I'm working on it. And to add some Funnies to the page to celebrate Friday. Here you go.

Monday, February 18, 2013

Home Sweet Home

And we're back. We are home several days early because Ava has done so well. When we were first told we could return home as early as Saturday, 2/16/13 I was NOT ready for that news. Ava's bandage wasn't even off yet. Plus it was 5:45 am and I had just woken up to the doctors coming into our room with the news.  Anyway, things changed, and we decided leaving that Saturday was best for everyone. We are home, starting to settle back in, and life is starting to resemble normalcy for us again. Said normalcy is still a ways away, but we get closer each day.

I'll be back soon with a recap of this leg of the journey. I'm not sure that you all are interested, but I need it to sort through these foggy memories, document Ava's journey, and maybe give other parents of a "Cranio kid" preparing for surgery some insight into what to expect.

I can't end this post without another big "thank you" to everyone who has thought of, prayed for, sent gifts to or helped care for Ava over the past few days and weeks. The prayers and well wishes kept God looking over Ava and kept Wynston and I strong during this time. The gifts were so thoughtful; some useful and nutritious and some entertaining or comforting. Last but not least, we couldn't have made it through the past week without the help we received caring for our Little Miss. Whether that help was someone watching our pets or house while we were away, someone sitting in her room during the middle of the night or during the evening so Wynston and I could go grab a bite to eat in the cafeteria, someone bringing in a warm cup of coffee to power me through, someone providing a meal so we wouldn't have to leave her room, or someone making sure we had a clean bed and warm shower to escape to for a few hours or someone giving me a hug or a pat on the back during a hard time. We are so blessed.

Tuesday, February 12, 2013

Ava - 9 Months Old

Weight: 18.4 lbs, 50th Percentile
Height: 29 inches, 95th Percentile, wearing 12M clothes

Diet: We really branched out into new foods this past month. On our 8 Month Update I mentioned Ava's sweet tooth and how we would be trying to balance that out. This past month we successfully added Roasted Veggies (just leftovers I pureed, including parsnips, squash, onion and brussel sprouts), Pumpkin and Rice, and Whole Wheat Mac 'n Cheese with Carrot. Again, all made at home. So easy really. We also added Blueberries, which Ava really likes in her morning oatmeal. Then Ava got another short round of this stomach bug. Her appetite dissipated, and when it returned she pretty much started refusing all purees most of the time. And girl was OBSESSED with our food. So finger foods have now begun! The easiest item I've added to Ava's diet has been Butternut Squash. I can get a bag of prediced squash at the grocery store, it steams in the bag, then a small bowlful is given to Little Miss for her to pick up and eat. There's also the spaghetti that has been on the nightly menu for her as well. I plan on soon making little balls of quinoa and tomato paste, and chopping some whole wheat pasta and tossing it in pureed broccoli.

Sleep: Consistently inconsistent! I think Ava is teething again (clingy, chewing on fingers, running a LOW low fever at times) and waking up a few times a night. But it's the kind of wake up where she can put herself back to sleep in under a minute. She also went through a week or so of waking up at 6 am. That was fun. :)

What's Going On:
Crawling - everywhere, especially towards the dog food bowl. Speed has now been introduced to her crawling.
A few first steps and cruising all around the living room. Detailed here.
Dropped Crib Mattress - after finding Little Miss standing in her crib one morning, we immediately dropped her mattress to the lowest level. We now start most days with her either sitting and standing, peeking through her crib rails, squealing and laughing when you open her nursery door. So cute. However we've had to alter our "sleep training" when it comes to getting her to sleep. At first, after finding she could stand in there, Ava would NOT lay down for a nap or to go to sleep. I had to rock her to sleep everytime, not that I'm complaining I just hadn't had to do that since she was a newborn. She is now better about standing for a minute, then laying herself down and nodding off. Improvement. :)
Vocals- Ava loves to hear herself now more than ever. She can yell and squeal and whisper. Girls got the gift of gab. Wonder where she got that from.
Surgery - Yep, that one thing that has DOMINATED our lives for several months now is tomorrow. 2/13/13. I won't get into the emotions or details right now, but ya, I'm ready. I'm ready to move on and resume life with Ava as normal.  

These pictures were all taken this morning, on Ava's 9 Month birthday! 3/4s of a year big girl!!

Sticking that little lip out at me.

Ava painted that for me and Wynston, as a Valentine's Day present. I love it. She, however, was more interested in EATING the paint than actually painting.

Sunday, February 10, 2013

Ava's Headband AND The Many Faces of Ava

Loooook!! I got out my digital camera and charged it!! Better pictures finally. Some of these are digital camera pics, some are cell phone pics.

There are two wonderful organizations that have sent Ava care items for her upcoming surgery and recovery. The first is the Cranio Angel Network. They make little pirate hats for boys to wear post surgery and headbands for the girls to wear post surgery. The idea is to help camoflauge the healing incision and keep little fingers off! The other organization is Cranio Care Bears. They sent Ava a care package stuffed (seriously, I couldn't get it all back in) full of toys, hospital items like ibuprofen, lotion, tissues, mints, granola bars, a set of zipper pjs and a warm hat, and my favorite, a prayer chain. Each link on this chain is fabric, with a hand written affirmation or prayer on it. Simply amazing. We'll be hanging this over Ava's bed in the hospital.

We've also been gifted with so many thoughtful and generous care items and cards for Ava over the past few days. People are amazing. It's easy to become convinced that the world is no longer full of decent people if all you do is read Yahoo and watch the evening news. But when you look around, I hope that all of you find that your world is as full as ours is of awesome people with big ol hearts. It's a good thing to know. :)

Friday, February 8, 2013

The Spaghetti Rite of Passage

It seems that there comes a day in every child's life, where they are introduced to the noodly food that is spaghetti. Laughter and messes ensue.

This day has come for Ava. It did not disappoint.

We had some leftover noodle soup stuff I'd made. You basically cook vermicelli or angel hair pasta in chicken broth, add a few spoonfuls of a thick marinara and a dash of Italian seasoning. We drained the broth from the leftovers, gave them a good chop to create safe finger food, and plopped some down in front of Ava. She loved it.

Watching her figure out how to pick up the noodles and get them in her mouth was pure entertainment. We laughed especially hard as we watched one dangling noodle get sucked into her mouth. However, that is the ONLY time I'll feed her something noodl-y in that awesome chair. I found noodles in every nook and cranny on that thing.

Wednesday, February 6, 2013

My Pinterest Fail - Falafel Pie

Wow, my dish could NOT have turned out looking any different than the one on Pinterest. Not sure what I did wrong...they didn't provide a baking dish size, so I used a 9 inch round ceramic baking dish. I also used regular Greek yogurt instead of soy yogurt (which in my opinion should've produced thicker sauce on top, not runnier sauce on top). Hmm. Who knows. Still pretty tasty. If we make it again, I think I'll use more hummus as well. You can never have too much hummus!

Original Recipe

My recreation. Hilarious, no?!

Monday, February 4, 2013

Ava's First "Momma-made" Dress!

Looking for a project that I could take on to keep Ava and I inside during our pre-surgery "quarantine", I began digging through my old pins. Lo and behold I found this Reversible Criss-Cross Pinafore that is just too cute. It's a cute little dress that can be worn alone, or layered with a onesie or a cute diaper cover. It's supposed to be a good beginner sewing project. Honestly, I agree! This was a good challenge, but not too hard. My biggest obstacle was my own lack of planning....which means I ran out of white thread, and had to finish this off with orange thread (all on inside seams so not visible) and clear thread.

The original pattern (which is free!) is for a 6-12 month size. I wanted this to be big enough to grow into this summer, so I added 2 inches to the bottom hem. The result is definitely a dress which is bigger on Ava right now, but has room to grow!

Please look past the wrinkles!

I am pretty pleased with the results of this dress, as long as you don't look to closely at my stitching! I've already purchased more fabric to make another one. I found fun mermaid and rickrack-y fabric! Very colorful. I'll be working on making the shoulders slimmer next time.  Oh ya, I also bought more white thread. :)