Sunday, March 23, 2014

Surgery Day

Maggie had her surgery on Thursday March 20th. I had planned to blog all the way through the first days, but quickly realized I have my hands very full! I'll try to go back and catch up.  FYI, I will be posting pictures from after the operation that may be difficult to look at.

The long awaited surgery day for Maggie was finally here. There was such build-up to it, especially after it was postponed the first time. There was so much to do to prepare for it, arrangements for the other kids, what we needed to have to care for her after, keeping her healthy leading up to the date... when the day began and she was healthy and it was finally happening, I felt such RELIEF that it was finally here.  Here's a look at the very long day.

5:30am Jer & I start getting ready

5:45 Boys get up, anxious to not miss out on saying goodbye to their sis

6:40am Wake up a very sleepy baby

7:30am  Arrive at Surgery Center at Children's Hospital (SO SO Lucky to live so close!!)

9:21am  Expected start time for surgery.....






11:18am Actual start time for surgery.  There was a delay due to the surgery before hers running long.
That left us with 4 hours to keep her occupied once we arrived. She was so awesome considering she was exhausted and starving.  We walked the halls over and over, she finally conked out in the baby carrier around 10:50.  We were with her when they put her to sleep. She was in my arms and had woken from her nap, then went to sleep so peacefully.  When Ben and Sam both were put to sleep for their surgeries, they were agitated, but she was so peaceful.  But it still tore my heart out to lay her tiny body on that huge gurney and walk away.  We left her special blanket on her and they promised to take good care of her.  Then we had to walk away.

12pm  Update from ENT.  Love this ENT doctor... she was very compassionate and seemed to truly care about Maggie.  That goes a long way with this momma!  She said Maggie's ears were very full of fluid and her eardrums bled a lot when she cut into them, which is unusual. She is hopeful that the tubes will make a huge difference in her hearing and overall comfort.  She said she most likely had ongoing irritation in her ears, which the pediatrician was not able to see since her ears are always so caked with fluid and wax.  I feel so terrible for her that she has had ear issues all along!

Waiting.... waiting.... WAITING....

They told us they book a 4.5 hour time slot for this type of surgery, but they are often done in 2.5 to 3 hours.  So we were thinking they'd be done by 2:30 or 3ish at the latest. That time came and went, with only a brief update that they were still working and she was stable.  I was pretty calm most of the day, but as the clock approached 4pm, I was starting to get really worried and I was just missing her.

4:10pm Finally, almost 5 hours after they began, they finished.  We spoke to the plastic surgeon and were shocked at what he had to say.  We had asked him if we could keep her "crazy" tooth as a keepsake after he pulled it, since the plan was for him to pull it during surgery. So we were beyond amazed when he said he was able to save it! Her top gum line was actually curved up sideways, which was why her tooth was pointing out to the side. He was somehow able to MOVE her gum line, rotated it down into the correct position, which saved the tooth!!! She now has 2 adorable little front teeth, somewhat in the right positions with the cutest space in between them. I can't tell you how emotional it was to hear that.  That tooth was the very first thing we noticed in her referral pictures... we thought it was a booger at first glance!  It was so unusual to be sideways and exposed the way it was, and such a topic of conversation. Both the surgeon and the dentist told us it couldn't be saved, so she would just not have a top left baby tooth.  But he saved it and it's now in the right position. Amazing.

He also said that her original lip repair that was done in China was terribly done. He said she was full of scars everywhere and they did not do a job anywhere near American standards for a lip repair. He ended up detaching her lip and skin from under her nose and completely "opened up her top lip".  This allowed him to better work on that top gum line and revise her lip.  When they did her first surgery in China, they basically "lost" her philtrum, which is the vertical indent from your top lip to your nose. He "found" it somewhere in her lip area and was able to put it in place correctly and close the "hole" (as we called it) under her left nostril where the tooth and gum was exposed, that had resulted when her lip tore back open after her first surgery in China.  He said it was a very major reconstruction, more than he had realized ahead of time, but is very pleased with the results.  Since the skin was completely detached from under her nose, and he did some work on her nostrils, she has to wear a nasal stent for several months to help hold everything in the right place.  We had never heard of this.  It's a piece of plastic with tubes that go way up her nose and into her palate area.

She also has to wear arm braces for 2-3 weeks that prevent her from bending her arms and touching her mouth.  They also put a stitch in her tongue to restrict it's movement during surgery, and they attached the string to the outside of her cheek. They would remove that the next day.  He warned us that she was not going to be happy with the nasal stent, the tongue stitch and the arm braces.

He also said he was successfully able to close her palate, which he wasn't originally sure he could do in one surgery.  In fact, from the way he talked, the palate was the easy part compared to the lip and gum area.

Most shocking, though, was what they found in her palate.... a SPONGE. Yes, they found a sponge that was left inside her palate from her surgery in China, which was almost a year ago.  For those of you who know the story, one of our biggest struggles since we got her was trying to figure out what the yellowish-white patch was that we could see in her palate and the related smell.  We drove ourselves crazy at first trying to figure it out, being sent from doctor to dentist to surgeon, on 2 different types of medicines, had it cultured, etc. The surgeon had looked at it a couple months ago and thought it was just food and mucus stuck, which I think she had that too. But the culprit behind all that was a sponge lodged up in my baby's mouth.  He said there was no way to tell ahead of time that it was in there, given the way it was stuck in there... regardless it's just a testament to what a terrible surgery she experienced in China.  It's also an absolute miracle that she didn't suffer from a raging infection from that being in there.  This is one miracle of a little girl.

He said since it was such an intense surgery, we could expect to stay in the hospital 4-5 days.  He also said that if she heals the way he's hoping, she may not need another plastic surgery until the age of 7!!!! Amazing, amazing news, way better than we even dreamed of.

After trying to absorb all that, we were sent BACK OUT TO THE WAITING ROOM.... TORTURE!!! That was the longest time I'd ever been away from her.  I just about couldn't stand it anymore, but we couldn't see her quite yet. Finally, finally, they sent us back. We followed the hallway back, looking for her bed number. I noticed a little one with crazy hair being held by a nurse with a crowd around and I remember thinking, "that little one has some crazy hair. Now where's my baby?"  Then I realized, THAT'S MY BABY!!!"  Brought back memories to the first time we were in China, the first part of her I saw was her head reclined in someone else's arms, and here again that was the first glimpse of her I had.  I scooped her up as fast as I could, my tears flowing all over her.

I was so afraid that my first look at her would be difficult, but she was just beautiful. Beautiful. I could see through the stitches and blood.  She looked like what she's meant to look like. I could finally see HER. Not the tooth, not the hole, not the cleft, but HER.

In that moment, I felt fear of the unknown of the next few weeks, how to care for her and keep her comfortable. But the biggest emotion I felt was pure joy for my girl.  It was finally her day, her redemption day. It's no coincidence that her surgery ended up being on the first day of spring. A day of new life and fresh beginnings.  After her first surgery in China, she was alone with no mom or dad to hold her after. No one to speak up for her and make sure she got the care she deserved.  This time we were there right away and didn't leave her alone for a second.  We're so, so lucky that we're the ones who get to hold her and comfort her through this time.

Her recovery is going very well despite her needing a high level of care.  I'll post again soon with updates on how she's doing!  Thank you all so much for the continued prayers and support.  They are working, keep it up!

1 comment:

  1. Its is really very sad, hope Maggie is now doing good now after surgery. Prayers for Maggie to recover very soon