Day After

It was a long night. We didn't want to give Edythe the heavy pain meds prescribed if it wasn't necessary, so when she seemed pretty fussy we gave her infant Tylenol. That took effect within 15 minutes and she felt so much better. For the first night and day she had Tylenol every 4 hours. She didn't feel well, and any bump of her hand hurt. That was the hardest day.

But since then, every day has gotten better! For the next day and night she had Tylenol every 7 hours or so, three doses, and she's had nothing since.

On the third day, she was really back to her normal self and we were thrilled! Exploring the house, wiggling her hips when there's music on, and chasing her brothers. We all hovered over her, trying to keep her from banging her hand.
Today is the fourth day after surgery and she's using her hand and arm (as much as she can with the cast). She hasn't shown any sign of pain in her hand for a day. And her pinky is pink!

We are glad we have to wait at least three months for her next surgery to release her two middle fingers. I keep wondering if the four fingers she has now are good enough :).

Surgery Day

     As I said, on the day of the surgery we were asked to be at the hospital at 6:30. At about 7:30 we put a little hospital gown on Edythe and the nurse brought her some "pre-op meds" to make her drowsy so she wouldn't fight when it was time for them to take her to surgery. She didn't like the meds, and I didn't like her to have them- she's never had any drugs or medication before! But with the pacifier's help we got it in her. Soon she really did look sleepy, but being her busy, inquisitive self she resisted sleep for all she was worth.

     At about 8am we went into the surgery waiting room where we met the surgery team. Each one of the team was so kind. The surgeon, Dr Wang, came in and marked her hand, then I handed Edythe to one of the nurses. Edythe won't usually go to strangers, but she went. We were grateful that she went in someones arms rather than on the hospital bed, and that she went without any crying (though she did look a little solemn).
     I'd felt great peace and calm to this point, but as we left through the surgery unit doors I began to cry. It was frightening. We'd just turned Edythe over to strangers. This was right, wasn't it?
The next few hours were the hardest, but remembering the peace I'd felt helped. And we sat in the big recreation room and read scriptures together, which also helped. "Look unto me in every thought; doubt not, fear not".
     After two hours my husband got a phone call from one of the nurses saying that they were now closing things up. All had gone well. We were so thankful! It was still another hour till Dr Wang came in to tell us how things went. She mentioned that Edythe's pinky had been slow to fill with blood, so she would check it before we left. She also mentioned that when they took the breathing tube out of her throat it had some mucous in it, so apparently she really did have a cold or else drainage from her teething was down there.
     Finally a little before noon Edythe's little bed was wheeled in, where she was fast asleep, breathing noisily. So beautiful! So sweet! And it sounded like she needed to cough. Though we wanted so badly to hold her we let her sleep till she was ready to awaken. She awoke a little disoriented, but not too upset. She was even a little interested in the toys. When the doctor came again and checked her pinky, it was pink, and we were relieved. By 2:30 we were discharged and on our way home-- through a snow storm, but going home!
     For the rest of the day, through the drive and after reaching home, Edythe slept most of the time. She didn't seem to be in pain, but it was hard to hear her raspy, croupy breathing. But the first surgery was over! It had gone well. We felt so grateful, and so relieved.

    

Preparing for Surgery

     Shriner's Hospital for children in Salt Lake City seemed different from any other hospital the first time we went there. It was clean, beautiful, and...peaceful. Funny words for a hospital, but it's a special place. We went for the first appointment when Edythe was about 4 months old. The surgeon, Dr Angela Wang, looked at Edythe's hand and said it looked like surgery could be done but we would need to do x-rays when she was a little older. We were also informed, while there, that Shriner's is run on donations, and patients aren't charged! It seemed too good to be true.
     When Edythe was 7 months old we returned for x-rays and were glad to find out the bones weren't joined, which would make surgery easier. But surgery would have to wait until she was one year old.    
     Meantime, Edy learned to crawl, and walk, and feed herself, and wave, and all kinds of things, making do without fingers. She seemed to be right-handed, but learned to do a lot with her left hand when fingers were essential.

    Finally we were able to make an appointment for her surgery: January 12th. To be safe, Edythe was not to get sick during the last 6 weeks. So all during December, when colds and viruses were everywhere, we tried to keep her away from it all. Having 7 older siblings made that a bit challenging. But she stayed well- until about a week before, when she had a clear runny nose and a cough at night. I talked on the phone to the anesthesiologist about it, and she said if no one else was sick to watch it for a day or two. I did, and she seemed to be getting over it, and then she cut a tooth. I was relieved to know the cause, and that her surgery didn't have to be cancelled. Actually, part of me wanted it to be cancelled. As it drew closer, I felt a lot of anxiety; was this the right thing to do? I needed more assurance. What if there were complications? Was it worth it? All I could do was pray, and I did, and peace came and grew through the last week, until by the day of the surgery I felt more calm than ever before! One night her 3 year-old brother prayed, "Thank you that the doctor can cut Edy's hand so it will be...like mine". So sweet. I hadn't realized he knew what was going on. And his faith strengthened mine. Another thing that was a blessing to me in preparing was finally finding a blog about another family's experience. When I read Ania's Syndactyly a week before Edy's surgery, it was such a relief to know others had experienced what we were feeling!
     The night before the surgery we bathed Edythe, fed her solids before eight, as instructed. I set an alarm so I could nurse her at 3:30 am since she was not supposed to nurse after 4. I didn't know how we would make it through the next morning with her not being able to eat, but though we got up before 5 am to make it to the hospital at 6:30, and though her surgery didn't actually start till 8:30, she was happy and busy, and not too hungry. Another tender mercy!

Edythe's hand: Why This Blog

In January of 2014, Edythe was born perfectly healthy in every way. 
When I was little, if anyone had a baby my Grandma would always say, "As long as it has all it's fingers and toes..." as if that assured perfect health for a new little one. 
Actually, Edythe had all of her fingers and toes, but on her right hand her four beautiful fingers were fused together. We didn't notice it till she was a few hours old. Even the pediatrician overlooked it until we pointed it out. When we noticed, it was quite a surprise-- we'd never seen such a thing. But even as I worried that first day, about how to live without the fingers we all take for granted, I felt a sweet peace assuring me that there was a reason, and that this lucky little hand was part of Edythe's mission here on earth.

We did what research we could those first few weeks, reading about syndactyly on medical websites. We learned that often when toes are webbed they are left, but with fingers surgery is usually done to release them. 
I couldn't imagine Edythe going through life without fingers! Often I stopped in my everyday tasks, suddenly appreciating my fingers for the first time and realizing how much a mother needs fingers, and knowing my little daughter would need them too.
Medical sites told us all about syndactyly release surgery but we still didn't know a lot of details; who does such a surgery? and where? how old should she be? So many questions!
Eventually our pediatrician found out about Shriner's Hospital for Children. This kind of thing was exactly what they specialized in, and there happened to be in Salt Lake City, only about 3 hours away.