My mom drove into town this afternoon to help out. We spent the afternoon and evening enjoying every moment with our little Lil...playing with her, feeding her, giving her a bath. It was a great night.
August 11, 2009
I woke Lillian up around 3:30 a.m. so I could feed her one last time before her food restriction went into effect. She was so happy and smiling even at that early hour. She went right back to sleep after eating. I couldn't sleep after that so I started getting ready since we had to be at the hospital at 7 a.m.
We arrived at the hospital and checked into same-day surgery. After waiting a bit, we were escorted back to our prep room where we were asked many, many questions and they took Lillian's vitals. They put her in a little hospital gown which was so darn cute. She was having a great time meeting all kinds of new people and playing with her toys and experimenting with some new ones (oxygen mask!)
We met with the anesthesiologist and then the pediatric orthopedic specialist (our doctor and the one performing the surgery) came in and talked with us for a bit. The Dr. expected the surgery to take about three hours. He also had two residents with him to assist with the procedure. We knew Lillian was in good hands.
After a bit, it was time to take Lillian down to the operating room. We couldn't go in with her while she was being put under because of some restriction the hospital has as far as her age. Handing her over to the OR staff was very difficult and as soon as she was through those OR doors and out of sight, I broke down. Thank goodness Addison and my mom were there to comfort me. She went into surgery around 9:10 a.m. As hard as it was to hand her over, I felt a sense of relief that the surgery was starting and we were getting this process going!
We waited in the OR waiting room...keep in mind that Cincinnati Children's is the busiest children's operating room in the country. So we were surrounded by anxious families waiting on word about their child. They had a large screen TV updating each patients status. It pretty much just told us if she was in the operating room or in recovery. We decided to go downstairs to the cafeteria and try to eat.
Waiting was hard but we were able to keep ourselves occupied. After about two and a half hours, the TV screen showed that Lillian was in recovery. For an instant, I thought "oh no, it didn't work!" because the Dr. had said he would know pretty quickly if this procedure would not work for Lillian's condition. Soon after, Addison and I were able to go back and see our little angel who was still very groggy.
I thought handing Lillian over to the OR staff was the hardest thing ever but seeing her in pain was by far the absolute worst feeling ever. We walked into the hospital with a smiling, happy baby and now she was confused, distressed and in pain. It was awful but I tried to keep in mind that it was all for a greater good.
Our Dr. came in and gave us the good news that the surgery was a success...what a relief that was to hear! He was happy with how he was able to get her hips positioned in the sockets but wanted an MRI to ensure that they were still in place with the cast on.
Oh, the cast...what a shocking thing to see! It is bright pink (color picked by mommy and grammie when daddy was conveniently running out to the car!) and starts just below her nipple line and goes all the way down to her little toes. There is a U shaped bar just below the knee level which is supposed to reinforce the cast and ensure she isn't able to move or shift AT ALL. There are two cut outs in the cast, one in her belly area allowing her belly to expand when she eats and another cut out for diapers (more on that later).
After spending some time in recovery, giving her some morphine for the pain and trying to nurse her (she pretty much just wanted to sleep) we rolled Lillian down to have the MRI. Grammie was able to join us at this point.
Lillian did well with the MRI mostly because she was drugged and slept. Until the final few minutes when the noise of the MRI machine woke her up and she starting crying. We were able to calm her enough to complete the MRI. Our Dr. was happy with the position of her hips in the cast so that was good news.
We were then moved to our room where we would stay overnight. Our main goal was to keep Lillian as comfortable as possible. She was experiencing muscle spasms which kept waking her up and causing her pain. It's not something I like to remember so I'm not going to write much about it but let's just say, it was the worst night of my life.
August 12, 2009
Lillian continued to be monitored and receive medication for pain and spasms. The spasms were still occurring although less frequently. Our pediatrician was at the hospital for a meeting and stopped in just to say hi. I thought that was really great of him and nice to see a familiar face and hear his reassurances.
We were surprised to find out that Lillian would be discharged after just one night in the hospital. I think part of it was that we were a little afraid to take her home. So much had changed since just one day earlier. We were happy though, that we could get her home to familiar surroundings where she might be a little more comfortable.
After being discharged and spending two hours trying to figure out how to adjust and install the carseat the hospital rented us, we were on our way home!
Post surgery update
The first three days were pretty rough for us but we are adjusting to life with a casted baby. I can sense Lillian's frustration at not being able to do some of the things she was once able to do but she is already finding new ways of doing things. Like scooting around on her back to get to her toys. She still enjoys playing on her floor gym and likes being in the high chair we bought her (we actually found one that she will fit in and it was only $40!) I feel like she is getting back to "herself" more and more everyday. She is smiling more and we've even had a few laughs.
Diapering is a challenge (think one maxi pad and one newborn diaper stuffed into the cast opening and a larger diaper on the outside of the cast) but is getting easier the more we do it. We have had a couple diapers leak already but we try to change them as soon as possible, clean her up and then use a hair dryer on a cool setting to help dry her. I'm sure by the end of six weeks, we are going to have one stinky baby!
Bath time is no longer very fun for Lillian but we are finding ways to try to make it fun for her. We really can only wipe her down but last night I filled up the kitchen sink, laid her on her belly and let her splash for a while. I don't think it was the most comfortable position for her but for the first few minutes, she was thrilled.
We have a follow up appointment with the Dr. next week to check how the incisions are healing and the cast itself. Her cast change will happen at six weeks. The cast change should be relatively easy in comparison to what she already went through because it is just that, a cast change. No incisions or cutting this time: put her under, take her cast off, clean her up (yeah!), reset her hips, recast and another MRI to check the position.
Thank you all for your thoughts and prayers. I literally felt them several times over the past couple weeks. I can't really describe it but when I was at my worst, feeling so low...it really helped to know that so many people had us in their thoughts and prayers. I felt surrounded by love and support.
Special thanks goes out to my wonderful husband who has been a voice of calm and reason in an otherwise miserable situation. And my mom who has shown me strength when being strong seemed impossible.
And of course, my beautiful, smart, strong, brave, funny daughter...my hero! In the seven months you have been with us, I have experienced a level of happiness that I never imagined...even among the recent struggles. You have given me the ability to love in a way I never thought possible. You are my joy, my happiness, my heart, my soul.
So here are some pictures of our little angel. We are now calling her our casted diva!
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