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).
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.
|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.