Big Update - Sorry to Leave You all Hanging

Lily did have her palate surgery on the 2nd. Everything, according to the surgeon, went smoothly. It was a rough day, and as I will entail later, a rough last couple of weeks. Lily's surgery was at 7:30 in the morning, so we had to be at UCSF at 6:15am.

Lily nervous about what is happening. She did not understand she was going to have surgery, but for sure she could tell that something was off that day. She knew that strange things were afoot. And you can see by her expression here that she is onto us, and getting worried. This was in the pre-op room.


After a nice cocktail of versed and anesthesia administered through a gas mask, she fell asleep very easily. I got to gown up and take her into the OR. She looked so tiny and peaceful lying on the table amidst all of the equipment. I cried when I left her, and Dave and I prayed and walked around and tried to eat and rest a bit while she was in surgery. The surgery (which also included another procedure of putting tubes in her ears) took about 3 hours. When we were called up into the Recovery Room, she was still sound asleep. It was a little scary seeing her lying there with the tubes connected, and a black thread sewn into the base of her tongue (Dave and the nurse took turns pulling gently on that thread to open up her airway a bit more to make it easier for her to breathe). She was sleeping, but we knew it was the calm before the storm.

Ay! When she woke up she was agitated and upset, and moaning and crying. She would drift in and out of consciousness, and be pretty ticked off every time she woke up. Poor thing.


She was not a happy camper that first 24 hours post surgery. She was also overdue for her pain meds by the time we finally got to the pediatric ward, and I was in tears trying to hurry things up for her. She slept fitfully and would still be crying off and on even with Dave and I holding her the whole time. Thankfully though, by about 8L45 that night - she was resting more comfortably and fell asleep for a longer stretch. The nurse practitioner (whom we LOVE) told us that the first day was the hardest and tomorrow Lily would be much much better. And lo and behold, thank the LORD, that turned out to be true. Here Lily is looking much better riding a toy car that they have from the playroom there.


You can see that awful black thread hanging out of her mouth, and also her no-no splints that she is wearing on her arms to keep her from putting her hands and toys into mouth. Oh, and also her hospital pajamas. Lily was able to drink apple juice that next day so we were able to go home by the evening. Woohoo! It felt so so much better to be at home. The hospital was nice, but goodness there are nurses and doctors coming in every so often to check vitals, give meds, turn off and on the machines, etc.

And would you believe that these photos below are from just 2 days later. Lily doesn't even look like she had surgery! Of course, it was all inside her mouth, but the swelling has gone down, and she looks ever so much happier, no?




You can see that she can still play in the tupperware drawer with her no-no's on. Still smiling and playing. Amazing and resilient. I thank the Lord for how astoundingly well Lily has been recovering. Here's a pic I snapped over the weekend when Lily slept in, and Nathan was reading next to her.


Now, about me. I had a rough rough week last week. My in-laws came to help out, which was such a blessing! They helped drive the boys to their classes and lessons, and cooked meals to eat and be frozen. Brothers and sisters from church ordered food for us, made soups, and brought treats for the kids. We felt so loved. I had a terrible time last week, though (and the week before) because I was really not feeling well. I had these tummy aches and gas distention that was not getting better. It was getting to the point where I was an emotional wreck every evening because I felt so overwhelmed by everything, and frustrated and sad that I could not play/teach/love on the kids and serve the family because I felt so tired and weak. Finally, Dave put me on some meds for gastritis, and I have to tell you that I feel like a new woman. Seriously, I feel back to normal and just want to give all of the glory to the Lord. He really is the one to give strength and hope, and I know He holds my family in His hand and that He wants me to rely on Him.

So, gastritis - I think that means I was more anxious and stressed than I thought. So I am taking it easy now (trying to). That means no Christmas cards this year, and no homemade cookies for the teachers or friends. Also, we are "coasting" in our homeschool now, and the house is not very picked up.

Tomorrow Lily goes for her follow up. I am a bit concerned that there is still some leakage when she drinks - a tiny tiny bit still comes out of her right nostril. Let's see what the doctor says. We have received such grace, though, as LIly has been such a trooper, and very tolerant (after the initial day) of her liquid/soft diet and her no no splints. Those darn no-no's do keep her from sleeping well at night, thoguh. I think that she wants to turn and roll over sometimes, and then she feels the restraint of those things. She is supposed to wear them for 2 weeks, so only 4 days left. Woohoo!

T Minus 3 days

Happy happy girl.


Lily brings out such joy for so many. Here she is with my mom.


And playing piano with my dad.


My sweet and spicy girl.


Yes, Lily's palate surgery is scheduled for this Friday, December 2nd at 7:30am at UCSF. Please do keep her in your prayers if you remember. We have all been under the weather over here for the past couple of days. Lily has been all right - although she seems to be teething and irritable from that. If she is sick on Friday, the surgery will be postponed. I am at peace with this - I know that the Lord in that case would have His reasons for that. However, you all know how anxious we are for this to be behind all of us, and for her life with a closed palate to begin! Please pray that we would all be recovering from whatever bugs we have so that we have the patience and stamina to care for our little sweetheart post op.

Many have asked - is she going to have a skin graft? How do they close the cleft (gap)? Her cleft is actually quite wide - measured to be 17 mm (nearly 2 centimeters) at one point close to the back of her mouth. There are no skin grafts used. The surgeon will use the tissue within her mouth, and cut flaps to do something that is called a z plasty. I tried to find a good diagram of how exactly it is done, but I am having trouble. If you google z plasty or furlow palatoplasty, you will get more info than you want to know :-). Because of the size of her cleft, there is a 20% chance that she will need another palate surgery. We, or course, are hoping that Dr. Hoffman can get it done successfully in one surgery.

Lily will need to stay one to two days in the hospital. She will be discharged when she can drink by mouth. Only one parent can stay with her overnight (that is me!). Please pray for me, as I am not sure what to expect. Also, pray for Dave and the boys who will be home without me for a couple of days. My in-laws will be here, which will be a huge help.

For about 2 weeks after the surgery, Lily will have to be on a liquid or semi-liquid diet. She will also have to wear arm splints (and possible leg splints) for about that long to prevent her from putting things into her mouth. Oh yeah, she is going to hate that so much.

Ok, onto more positive things! I have received so much encouragement the past week!

First off, Dave told me about this amazing message he heard over the weekend. I couldn't be there because Aaron was (you guessed it) not feeling well that day. We and Lily stayed at my mom's house and watched the Star Wars marathon on t.v. Thankfully, Dave shared with me some of the message which was about prayer. The speaker (Godwin Sun) shared about the story of Esther. How she did NOT have the right to go in to speak to her husband the king unless he first asked for her. How the penalty for going before the king without invitation was death. How she bravely went in to see him, hoping that he would extend his sceptre out to her - meaning he would spare her life and give her audience before him. And for those who know the story - that is what happened. The king extended the sceptre to her and heard her pleas for her people. Through Esther's actions, a whole nation of people (Israelites) were saved. And she didn't even have the right to appear before him. Brother Sun reminded us about the power of prayer. And how we, as Christians who trust in Jesus, HAVE the right and the absolute privilege to come right before our King any time we want to. We do not need to hold back. He has made the way for us to come right before Him and speak to Him without any fear of punishment or reproach. Esther was able to save her people when she pled on behalf of them before her king, how much more can be accomplished through our prayers before our Lord our King! Such a wonderful reminder about the importance and power of prayer.

Another encouragement was our across-the-street neighbor said to me about Lily's surgery, "A big step forward." That was a good way to frame it :-).

Finally, so much comfort from brothers and sisters. A sister who has given me the standing offer to pray with me (even in the middle of the night) should I feel the need when I am at the hospital with Lily. Her husband who spoke directly to Lily saying, "Lily, I will be praying for you all day on Friday. We will remember you and be thinking about you all day." And an e-mail from a sister telling me that her family will be praying for little Lily - it is already on their calendar. And in her e-mail she reminded me that she will be in His hands and His heart - and that nothing escapes His notice.

Breakfast Chaos

A little video of "second breakfast" after taking the two older boys to Chinese class last week. In this video you will see. . .
1) My stream of consciousness narration (sorry)
2) Cameo of Dr. Phil
3) Lily doing some of her signs. She signs "Where?," "All done," and "Open." They are a bit hard to catch because she was doing them really quickly. You can check out this ASL Video Dictionary to see what the signs are supposed to look like. Pretty fun stuff!
4) Aaron lovin' on his sister and entertaining her.




Thanks for humoring this proud mama.

GREAT News!!!

I received a call today from the genetic counselor at UCSF regarding Lily's chromosomal array test. . .

Everything is normal!!!

Praise the Lord! Can I get an amen?

You all know how this has been in the back of my mind lately. I am so so thankful that Lily is all right!

I am so elated :-).

Another exciting thing happened yesterday - we received THIS in the mail. . .





Lily's U.S. citizenship papers! I told you that she became a U.S. citizen when she landed on American soil. This is the piece of paper that makes it official. It was a long day for everyone yesterday. The kids and I went to the Monterey Bay Aquarium for the free homeschooling day (and it is about a 90 minute drive from home). Dave was down in Los Angeles yesterday for one of his day trips to work at USC. Anyway, we met at a restaurant for dinner. Dave had zipped home first and saw Lily's citizenship envelope in the mail and brought it to dinner to show us all and celebrate together. We were all so happy to see it! The bad thing was that we nearly left it at the restaurant. Oops. Dave even had to go back in to get it - we nearly drove off without it. That would have been so bad. Thankfully, though, Dave remembered and got it. Phew!

And I finished a sweater a week ago for Lily. It is the Seven Hour Toddler Sweater. It barely fits her and the yarn is already pilly, but I think that now that I have made it once I can knit a version 2.0 that will suit Lily's needs better. It is on the needles already!





I am not much of a knitter, and it is rather exciting that I finished a project. It took me 7 days - about an hour a day.

Lastly, we had our 1 month postplacement visit today. It went well. It was nice to talk to our social worker, Patricia, about how things are going and to fill her in on our trip to China and LIly's development.

Ok - really lastly, a cute story about the boys. They are even now still trying to fall asleep. They are in their pajamas and brushed and tucked in. We have read our books, said our prayers and turned out the lights. Matthew (very typical for him) started worrying about stuff and his mind started wandering all over the place about things that scare him and make him anxious. I told him, "Think about something fun. Think about playing with Peter (his best friend)."


Dubious silence ensued from the direction of Matthew's loft bed. All of a sudden, Nathan replied, "I am thinking about names for new stuffed animals."

:-)

Love it! When I was a girl I would think about names for my future children. I love it that my rough and tumble boy is such a tenderheart bear. Thinking of names for new stuffed animals :-). Sounds like a relaxing way to fall asleep to me :-).

Orphan Sunday

November is Adoption Awareness Month, and last Sunday (the 6th) was Orphan Sunday.

We didn't plan it this way, but we were in Los Angeles for the first time since coming home from China last weekend. We introduced Lily to Dave's parents, and also to my father (my mom was very bummed to be on a business trip) and my sister, June, and her family, and my sister Jenss who was also home for the weekend. Here are all of the Peng grandkids.


And my dad holding Lily for the first time at IHOP.


Last Sunday, we returned to our "home church" we are a part of in Los Angeles. We got to introduce Lily to everyone there on Orphan Sunday. Somehow it felt amazingly right. It felt, in a way, like she is truly home now. Now Grammy just has to meet her over Thanksgiving.

The last week has been tough for me. Lily continues to learn and grow in many ways. We are encouraged every time she learns a new sign, or understands what we are saying, or crosses new milestones. Lily can now not only walk all over the place, but she can go up and down the two steps that lead down into our play room. She has started to feed herself, too (a messy affair - but oh so fun).



The last week has been tough though for a couple of reasons. First of all, I have been so worried about her medical stuff. After visiting UCSF and getting her surgery scheduled, I am growing anxious thinking about that. We have never had a child undergo surgery. The thought of it and caring for her during the painful recovery is daunting to say the least. I know that this is so necessary and that her quality of life will be so much better after it is all said and done. Thankfully, Dave's parents are going to come up a couple of days before the surgery and stay until a week after wards to help with meals and driving the other kids to and fro.

Also, I had mentioned that she is having this chromosome test done (we are still waiting for results), and I am nervous about the results. Even though we have been reassured by the doctors that she is most likely fine, medical test taking of course makes me very nervous as to what *could* come out of it.

Lastly, in the last week, Lily has really started to hit people more and more. Particularly Aaron, poor guy, if he gets in her space or has something she wants (which is pretty much everything). She even whacked me on the nose the other day at Target when we were in the school supply aisle because I took the rubber cement away from her to put away :-(. I know that hitting is normal even for non-adopted children at her age. But goodness it is pretty new to me and rather disconcerting.

We have been trying very hard to teach her about saying "Please" and to be gentle. I hope this passes quickly as now I have even more limited time keeping up with her. I cannot trust her to play with her brothers (or other children) with me at a distance. I have to be right there - within a couple of feet - to watch for flying hands. Needless to say, not much is getting done around here in the housework department :-(. There are moments where I feel completely overwhelmed and frustrated. I savor the time I have after all the kids have gone to bed so I can have a few moments to eat and lounge and relax.

Angie's post about The Tigress was a true encouragement to me. Check it out if you have some time. Sounds like her little Emery and my Lily have lots in common personality-wise.

Please keep Lily and all of us in your prayers.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Just for fun. Our dear friends Ben and Joanna sent us this bulldog stuffed animal. Joanna even sewed one eye closed just like the real Philly. Seriously, when I see it out of the corner of my eye I think it is really Phil. "Baby Phil" arrived last week and has been a fun addition to our stuffed animal family.

One Word Wednesday

ROSEOLA.

Cranio Cleft Team Appointment at UCSF

I did not write about our insurance problems that we have had recently. To make a long story short, our insurance (which we upgraded to the best upon Lily's homecoming because we knew she would have so many appointments to go to) was no longer being accepted at Lucille Packard Children's Hospital (Stanford's children's hospital). We went to 2 appointments in October (plastics and audiology, you remember) and received a tremendous bill for them. When I called to find out what was up, I found out that Lucille Packard was not contracted at that time. Yes, even though my husband works at Stanford, as a physician mind you . . . our own child was not covered at the children's hospital. So I made an appointment at UCSF which is covered and a preferred provider. In the meantime, the contract has been renegotiated between LPCH and our Anthem Blue Cross - but I think that this whole experience left such a bad taste in my mouth that we decided to just go to UCSF.

Also - they were able to get Lily in this past Monday for her cleft team appointment. I called Thursday, and the appointment was Monday. Amazing!

Anyway, Monday was crazy. I was zapped afterwards, but boy was it productive and high yield. I had to send the 2 older boys to a friend's house at 7 am so that they could get a ride to Chinese school which does not start until 8:30. Then, Dave and I took Lily and Aaron (poor guy had to accompany us) to SF. The appointment was at 9, and we got there in plenty of time. Lily saw the speech therapist, the social worker, the nurse practitioner (she runs the show!), the plastic surgeon, the ENT doctor, the orthodontist, and the geneticist. Crazy, huh? It was great, though. She had to have a blood draw for one more test - a chromosomal ray (not sure if that is the official name) which basically maps out her chromosomes. If you remember, please pray for those results (which should be ready in 2-3 weeks). I hope that her cleft lip and palate are just structural issues and there are no accompanying problems with them.

Everyone was very informative and nice. After the blood draw, it was 2pm! We headed to the foodcourt on campus and ate at Panda Express. Then it was off to pick up the boys and then to piano lessons.

By this time, it was time to go directly to Dave's colleagues home for trick or treating (separate post if I can get motivated). So it was an exhausting day - but I am so glad that Lily got to be seen by so many specialists all in one fell swoop.

Also - the next day the administrative assistant for the plastic surgeon, Dr. Hoffman, called and told us that Lily's palate surgery is scheduled for Friday, December 2nd. I have to say it was a relief to get that scheduled (I know it needs to be done), but also I am getting nervous!