After the Cast is Off

Her cast is off! Now she can forget her temporary fascination with toilets! 

Things went so much smoother than the first time she has her cast removed. For one thing, we remembered to soak it, so it was easier. And this time Edythe fussed a little but not much. When the cast was off she stared at her hand for a few moments. Then she picked up her other hand and looked at it. Then back to her right, then her left. What was she thinking? How I wanted to get inside her sweet head. Then she put her right up to me to show me. I told her it was beautiful and kissed it. She smiled and hopped off my lap to play with the toys. Amazing!

My husband and I both thought her fingers looked better this time. The Dr said she used a different type of suture, hoping it would help reduce the scabs and scarring. Although Dr Wang told us we should wash her hand, massage it, and let her use it lots, I doubt she wanted for Edy to bite off all the dead skin and loose scabs, but that's what she did all day! Yuck!

This time, instead of feeling worse on the third day she's just her happy, busy self and though her fingers are red, they're not very swollen. Misshapen, yes, but that will change with time.

I am just so thrilled that she has these five beautiful fingers now!

I haven't seen her bend her middle finger yet. Hopefully with time that will happen too. And though she had web creep between her 4th and 5th fingers, the Dr said that may take care if itself. I hope we are done with surgeries!

Second Surgery

Edythe had her second surgery scheduled for May, but she got a cold and pink eye two days before. It was so disappointing to have her surgery postponed after waiting so long, but I had felt so nervous about it that it was a little bit of a relief as well. But then I'd look at her hand and want her to have full use of all her fingers, and wish we could get the surgery over with!
Jellybeans
The surgery was rescheduled for June 15th. We tried hard to keep Edy well, keep her away from sick people, and even made sure she had an extra healthy diet the week before. Then at church the day before the surgery a kind sister took her from me so I could play the piano for the meeting. When I peeked over the piano to check on her I saw that someone had given my 17 month old a bag of jelly beans. And she didn't say, "Thanks, just one", either. She was chowing down. I sat there and worried and tried to figure out what to do. What would this do to her immune system? To her stomach? Should I stop in the middle of the song and jump up and grab her? I been trying so hard to learn to trust the Lord, and I thought of that. Then the thought came into my head:"Do you think I can't handle jellybeans?" Of course he could. I let the worry go. When the woman holding Edythe caught my eye and motioned to ask if they were okay I mouthed "One." She looked "Whoops!" and took the rest of the bag and put them away. And I forgot about it. Later that day we made the trip to Salt Lake City. I was still checking her nose every once in a while in case she was going to come down with a cold at the last minute! Right before our three hour drive was over, Edythe suddenly vomited all over me. Everything in her stomach. All the way down to the jellybeans! Well, that was one way to take care of them. She showed no signs of upset stomach after that.
Surgery
Early the next morning we arrived at Shriner's Hospital in Salt Lake City. I'd felt some anxiety all week that I'd continually tried to push away, but that morning my prayers were answered and I felt totally peaceful. We went through all the preparations we had before. Things had gone so well the first time that I prepared myself for something- anything- to go wrong. But nothing did. Her surgery started on time, she wasn't too starving before then (she couldn't eat after midnight), the nurses and doctors were as kind and helpful as last time... And this time when she was wheeled back to her room, she wasn't still asleep but was sitting up on her bed. She didn't dry til she was us. And though her voice sounded a little hoarse, she wasn't croupy like last time. She was a bit cranky, but more than happy to nurse and then down the bag of goldfish the nurse gave her. She REALLY wanted the IV out of her foot and the monitor off her toe! Once that finally happened she was ready to go play in the playroom with the big cars. Wow. Last time she was rather lethargic afterwards, so we were surprised. On the drive home she was no worse than normal on a long car drive ;) and she was so happy to see her siblings again. Before bedtime we tried to give her some Tylenol since she was getting fussy, but  I don't think much went down. That was a really long night. Since I didn't know how much she got I didn't want to give it to her again. But the next day she had it only in the morning then about 7 hours later. Then next time it was 10 or 12 hours. And she just played all day like nothing had ever happened! Her finger was basically cut in half, and she doesn't seem to care! What a precious girl.

I have to add: So many prayers were answered with this surgery going well. Faith of many people brought this about, but it was Edy's faith, too. The week before her surgery our family fasted for her, and later in the day my husband gave a priesthood blessing to one of the other children. When he had finished, Edythe came over and climbed up on the chair and turned and looked up at him. He laughed, "Do you think she'll hold still?" he asked. "No!" we all answered. We know her too well. But she just sat there, so he place his hands on her head and gave her a blessing. And she sat still and quiet the whole time, and when it was over climbed down and walked away. Can a one-year old really have faith to be healed? I think so.

Splints

Through the spring and summer since her surgery, Edythe has gotten better at using her right hand again, and still kept her left-hand skills. Her index finger has continued to straighten out more and has grown, so that it's almost the same size as that of her left hand.
At her appointment in March the doctor said she'd had a little web creep-- there had been a scab between her last two fingers, and when it came of it looked like her fingers had grown back together a little. So they had some splints made for her to sleep in. They are polymer pieces that fit between her fingers and put pressure on the scars and kind of hold them apart. I was faithful at putting them on each night at first, but then I noticed that she seems to have less fine-motor control after wearing them, so I didn't put them on every night after that. It didn't look like the web creep was increasing any more.
Here's a picture of the splints.

A Week After the Cast Comes Off

     Though there were a few days this last week that were scary for me, it's been exciting to see the progress as Edythe's hand has healed. the scary part was about the 3rd day when her fingers got quite red and swollen. It was evening, or I would have called the doctor. Whenever there's any sign of a problem, my imagination always goes wild, so I worry more than necessary. But I didn't know what to do to take care of the infection. I'd read that hydrogen peroxide was bad for newly forming skin. I put some colloidal silver on it thinking that would be more gentle. I had been covering her hand in manuka honey each night, then putting a sock on her hand to. I worried that maybe I shouldn't have done that. But after being reassured by my hubby that she would be fine I went to bed. In the morning her fingers looked a little better and they continued to improve all day. Whew!

     On about the 7th or 8th day her last stitch dissolved so her hand looked so much better when those scabby stitches disappeared. Through the week she continued using her new fingers more and more. Now she uses it just like her other hand, and her index finger, which has always been pulled in, can now straighten and point ( I love how toddlers point!).

Getting Her Cast Off

      The night before Edythe was to get her cast off, I peeked at her pinky, as I often do, and instead of pink it looked white! I tried to pull open the hole in the bandage some more so I could see better but it wouldn't budge. So I worried a bit that night, praying for her hand and remembering that her hand is in the Lord's hands.
      We left early the next morning for our 10 o'clock appointment in Salt Lake. We arrived early, so we had time to let the other children see the hospital.

Apparently we were supposed to have soaked the cast that morning but somehow missed that information (we were so intent about keeping her cast out of the toilet for three weeks! Get it wet!?) So nurses came in and soaked her cast, which Edythe found interesting, then began to peel and untangle and cut it off, which Edythe found increasingly annoying.

By the time the cast was off she was screaming, so the nurses had to shut the door so it wouldn't scare everyone. It didn't hurt though, because as soon as the cast was off she stopped hollering. And there were her new fingers. All pink and beautiful! It probably would have looked frightening to anyone else, but to us, seeing her fingers was so wonderful.
      There were still stitches on her hand and up the sides of her fingers, and blood, and scabs. One spot between her 4th and 5th fingers started to bleed a little.  Dr Wang came in and took a look at her hand, picked off some scabby tissue, and said it looked really good. She said to massage it with oil (vitamin e or whatever kind we wanted to) several times a day. She said to let her bathe, use it, and that the more we touched it, the better it would be.

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.