Oh friends, this has been a wild ride. Not going to lie, it hasn't been easy. We are still learning how to maneuver with these larger than expected casts, how to hold her comfortably, how to help her sleep and play, and how to keep her entertained. Despite my extensive research on all things related to her surgery, I'm still not sure I could have been prepared. We each had our share of meltdowns during that first week and Ryan and I had all but announced that we would not be during any more surgeries because this was miserable and we couldn't stand her being so uncomfortable. And then a week passed and we survived and the sun came out again (aka she started sleeping) and now we've come to terms with how things will be and what we can expect the next go around. Let's start from the beginning though. This will probably go into far more detail than most care to know, but when I was preparing for her surgery, it helped me reading other mom's anecdotes about their experiences and my hope is that this helps someone, too.
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Morning of her surgery
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Sawyer's surgery was scheduled for 10:00 on Wednesday morning and we headed down to Houston the day before. My mom rode with us and Ryan's parents drove separately, but we all stayed in hotel just across the street from the Children's Hospital which was the best decision ever. We shared a two bedroom suite with my mom that had 2 bathrooms, living room, full kitchen, and dining room, and it was so nice to have that space with Sawyer and be within walking distance of the hospital.
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In the waiting room
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Sawyer was allowed to have formula 6 hours prior to surgery and breastmilk/clear fluids 4 hours prior, so I woke up at 3:45 on Wednesday morning to give her a bottle of formula. She basically stayed asleep while she ate and went right back to bed after. I woke her up again at 5:45 to give her some breastmilk---she wasn't really hungry but she took about 2 ounces which I knew would help hold her over until surgery time. We arrived at the hospital as scheduled around 8:00 to get checked in. They had a relatively large waiting room for day surgery patients with lots of toys, small tvs with video games, plenty of seats, and an attached room for eating since there was a strict 'no food or drink in the waiting area' because every child in there was hungry and thirsty. They also assigned a number to each patient that you could use to track your child on the multiple status boards throughout the room during the various stages of the day, such as pre-op, in OR, anesthesia started, procedure started, recovery room, etc.
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Keeping Sawyer entertained
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For the next two hours we played, completed registration, they did an assessment and vitals on her, and just waited. She enjoyed getting to watch the other kids run around and play with the big toys. About 9:30 she was pretty much done with the day and after some bouncing and walking around she finally fell asleep on my shoulder which gave me some good cuddle time before we had to go back to the pre-op room. Right at 10:00 they called us back to pre-op and they had us change her clothes and put her in an outfit that was entirely too big for her. It was supposed to be a shirt and shorts, but she wore the shirt as a dress...someone needs to order Sawyer-size. Then we had a chance to speak to our anesthesiologist, surgeon, fellow surgeon, and OR nurse. We signed all of the consent forms and after not enough hugs and kisses, the nurse took Sawyer back to the OR. The nurse said that the anesthesia portion should take about 30-40 minutes so not to leave the waiting room until she had called and let us know the procedure had started. They took her at 10:50 and she didn't call us until 12:10. Right before the nurse called, I told Ryan that I bet they had trouble getting an IV on her and I should have told them to use her scalp vein. When I spoke to the nurse, she apologized for how long it took and sure enough, they couldn't get an IV even with multiple attempts with ultrasound guided and had to put one in her head. Later that night, despite the anesthesiologist asking me not to, I counted the number of pokes---18!! The anesthesiologist said he hated scalp veins and they were always his last resort, but I feel like "last resort" needs to come a lot sooner than 18 attempts! Thankfully, they use sleeping gas before IV attempts so she wasn't awake.
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Ready for surgery!
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There were two men acting as liaisons that went back and forth to the OR and waiting room to deliver updates from surgeon to family. They were amazing. So personable, kind, cheerful, and fun to talk to and they kept us up to date on each step throughout the day. During this time, we took turns taking breaks going to get food, walking around, but mostly just stayed put and waited.
Around 5pm, Sawyer's surgeon came to update us and after initially shaking our hands and saying things went well, he pulled up a chair and told us our little girl had worn him out. Sawyer's left hand, separating the 3rd and 4th digit (complex complete syndactyly) took about 1 1/2 hours. Her right hand, separating the 4th and 5th digit (simple incomplete syndactyly), removing the 2nd digit and corresponding metacarpal, and creating a webspace between the thumb and 3rd digit, took about 3 hours. It was tedious and intricate work---I can't even begin to imagine what it's like to be working on such tiny hands, let alone reconstructing ligaments and splitting nerves. He ended up needing to place long pins in the two fingers on her left hand and one pin in the thumb of her right. Her 3rd digit on the right hand (now 2nd) had already grown curved more than it should due to the fusion, so when she has her next hand surgery to close the cleft, he will have to straighten that finger. He brought out his digital camera to show us the before and after pictures and we are so amazed! Prior to her surgery, I was having a lot of mixed emotions about it. I LOVED her little hands just the way they were and felt terrible for making her undergo surgery for them. But after seeing those pictures, I am so excited for her to have more function with her little fingers. He is brilliant and you can see the delicate care he took with each hand and definitely know we made the right choice.
Around 5:30p, they allowed us to see her in PACU. I thought saying goodbye to her in pre-op and waiting all day would be the hardest part, but then we walked into the PACU and she was in a big crib with her head elevated, eyes were closed and her cry was hoarse and more like a whimper, with an oxygen mask next to her face, and big club-like casts on her arms---SO heartbreaking. The nurse let me hold her right away but immediately I felt like a mommy failure because I couldn't figure out how to hold her with the casts and wires and I just seemed to agitate her more than comfort. We tried to give her some Pedialyte and she took a little, but mostly just whimpered. Eventually the nurse gave her another dose of Morphine and that knocked her out for another hour before we tried to wake her up again. Ryan and I agreed later than PACU was our least favorable experience. We gathered that the nurses here didn't see a lot of infants for day surgery, certainly not her size, but she kept asking me if I thought she was okay to go home yet (Um, I have no idea?!) and then later wasn't sure how to take the scalp IV out---I just about did it myself. A doctor, who didn't even come to see Sawyer, said we could go and without signing any paperwork, so much as real discharge instructions, they ushered us out the door about 8pm. At this point though, I just wanted her out of there and home so I was okay with it.
I carried her in my arms from the hospital to the hotel because she cried every time we tried to put her down. Once we got back to the hotel, Ryan and his dad went to pick up dinner and her prescriptions while I tried to give Sawyer more bottle. The grandmothers made her a little nest in one of the hotel beds so we wouldn't have to lift her in and out of the pack n play and she slept from 10pm to 5:15 in the morning with a few whimpers during the night.
Day 1 Post-Op:
The day after her surgery was probably the easiest day. Sawyer slept through the night after her surgery and when she woke up, she took some Tylenol and a bottle and pretty much went right back to sleep on my shoulder for another hour or so. Sawyer was given a prescription for Tylenol with codeine, but the surgeon had said most parents found that alternating Tylenol and Motrin was just as effective managing pain. I decided to give her a dose of the heavy duty pain med before the car ride home in hopes that she would be more comfortable.
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Not too happy with life right now.
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She pretty much slept the whole way and when we arrived home, she slept some more. I was contributing this good sleep to the stress, fatigue, and likely the anesthesia still wearing off.
We had a little scare/panic moment (mostly me, not Ryan) when the tan tape on her right cast and gauze fell off and we could see her fingers in the cast! The surgeon had said her fingers would be completely covered and here we had just driven 3 hours home and her finger was visible and slightly protruding past the hard cast.
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Not supposed to happen!
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I called the office right away and tried to explain to his assistant what had happened and asking what we should do---I got nowhere with that and she basically just told me to cover it back up, that he does not make mistakes, and I was crazy. (She didn't actually say that, but she was probably thinking it) Ryan ended up calling back after me and asked for a way to contact the surgeon. We ended up e-mailing him multiple pictures and asking if this was okay or we needed to come back. Seriously, we probably wrote a novel of an e-mail and his reply was two sentences, "It should be fine. You did the right thing."
So, we covered it back up with gauze and tape and called it day. Until she started batting her casts on the things and hit that exposed finger. Crocodile tears. We almost put her back in the car and drove straight back to Houston, but then Ryan creatively cut a plastic cup and put it over that cast so it would protect that finger. (2 weeks out and it's still working) Thankful for a handy husband! :)
One thing that also surprised us was her skin graft site. In my mind, I was thinking thin layer of skin-no big deal, but in actuality, they basically removed a roll from the groin area. This is a picture of it covered, but underneath that is a large incision with multiple stitches! Can't be comfortable.
Day 2 Post-Op:
Fussy. Fussy. Fussy. Sawyer was only content when being held, by me, and walked around. She'd only sleep in motion on my shoulder or when driving around in the car. That night was the worst. I gave her the heavy duty pain med before bed and she would. not. sleep. She was okay if you held her, but screamed if you tried to put her down. I walked with her for hours, took her for a car ride around 1 am---still wouldn't sleep---, walked around some more, and she finally fell asleep in her rock n play at 4:30am and woke up at 7:00. We were all completely exhausted the next morning and my back and arms ached, but we did the same thing that day.
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So tired but still smiling.
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Day 3 Post-Op:
We really started noticing how much her antibiotic affected her little system. It seemed to upset her stomach and she had more signs of reflux after taking it---probably why she stopped eating. She was all for the bubble gum pink stuff the first few days and then it became a struggle to get her to take it. I'm talking 5mL, four times per day!
Day 4 Post-Op:
Sawyer started sleeping a little better this day. She finally took a nap in her crib, as opposed to the car, and that night she did a good 4 hour stretch in her crib, then in my arms, then in the rock n play. She was also much more content today and we started seeing our giggly girl again.
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| Out watering the plants with dad. |
On the fifth day, she really started to perk up and continues to do so each day. Now that we're two weeks post op, she is much happier, has mastered rolling over, sitting up, sleeping on her stomach (looks so uncomfortable with the casts), and is now eating better She still requires lots and lots of entertainment since we basically took away her ability to feed herself, play by herself, self-soothe etc, so we tend to go from activity to activity pretty quickly and that's okay. I sewed up the ends of some of her baby leggings and they make perfect cast covers---so stylish!
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Using her face to push the buttons and taste the toy.
We are thankful for having one surgery under our belt, but not looking forward to doing this again. Initially, her surgeon said we would only have the full casts for 2 weeks and then glove-like casts for another 2 weeks, however, after her surgery he thought she would probably need to stay in the full casts for 4 weeks and then glove like casts for another 2 weeks. We go back to see him this week for a check up and we'll see what he thinks then.
Sawyer continues to amaze us with her strength and resilience and we are so proud of her. A HUGE thank you to everyone for their continued support. We have received countless messages of prayer and encouragement and we are so grateful for each one. Ryan and I feel so blessed to have so many people rooting for our sweet girl!
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love,
Team Sawyer
