Anna Is Home

Yesterday was a good day. Anna was released from Children's Hospital and is finally home after 17 days. Her appetite improved instantly. Home cooking is so much better than hospital food! She slept through the night for the first time since she went to the hospital. This morning, after a good breakfast of bacon, eggs, and fried potatoes, Anna settled into her Dad's recliner. She is playing with toys that so many people kindly sent while she was at the hospital and singing Chinese songs. She is so happy to be home!

THANK YOU to everyone who sent emails, cards, notes, gifts, and phone messages, and to those who visited. We haven't had the opportunity to respond and thank you all; but know that your support meant the world to us.

Anna still has 4-5 more weeks in her body cast. It's difficult for her to be comfortable being so constrained. She has only one tube left, her catheter. It has to be irrigated 3-4 times a day, which she really dislikes. Ayi Sarah will be very busy tending to Anna's needs for the next few weeks, while Mom and Dad will be busy taking care of her evenings and weekends.

Ayi Sarah was so helpful during Anna’s hospital stay. Staying with her for several nights gave Mom and Dad a much needed break. And Sarah was so good at entertaining Anna during her post-surgery recuperation.

Without Nana Barbara's support, things would have been so much more difficult. She picked up Lily from school each day and many days took care of her well into the evening giving her dinner, baths, and tucking her into bed. Lily especially loved the nights she slept at Nana's house.

Last evening we were together at home as a family for the first time in a long while. It was so nice snuggling with our little girls, watching Winnie the Pooh, and experiencing the bond that the four of us have developed in such a short period of time.

Jennifer, a Child Life Nurse, came everyday to make Anna's day more fun

Time to pack up and go home!

One last picture at the entrance to the Giraffe Wing of Children's Hospital

Waiting for the car

Lounging and playing with new toys

Lily's 3rd Birthday Party

With all the focus on Anna the last couple of weeks, we wanted to share that Lily's birthday was celebrated.  She and her friends had a fun afternoon at Gymboree.

Update on Anna's Hospital Stay

We had hoped that Anna would have been at home a week ago, but she is still in the hospital. The issue has been her lack of appetite. She has had little interest in food, and has had to be nourished through an IV. The doctors have been quite concerned that she would not heal without enough calories. As one of the surgeons said yesterday, "She had the mother of all urinary surgeries, and she needs all the nutrition she can get in order to heal".
The last couple of days she has started to eat a bit better and, although it's still not enough, she's moving in the right direction. Our hope is that she will be released before the weekend.

Update on Anna- Friday

This past week has had its ups and downs in regards to Anna’s recovery. Monday evening she was doing so well that we thought we were going to sail through her recovery. We should have anticipated some bumps along the way.

On Tuesday Anna started vomiting and refusing any food or liquids. By Wednesday morning the doctors became quite concerned with the lack of nutrients she was getting. After consulting with the doctors, it was decided that Anna would go back under anesthesia to have a PICC line catheter inserted so she can be fed intravenously. This is a delicate procedure as it is placed into her heart and is performed by a certified radiologist.

They had a terrible time getting the central IV line in place and it took several attempts. They ended up using an IV line the size of a human hair and still had trouble getting it to the heart. During the post procedure consultation the doctors shared with me that they’ve never experienced so much scar tissue in the veins of the child this age. This was a similar experience that the IV team had trying to place Anna’s pre-surgery IVs. Hearing this broke my heart as it reminds me that Anna has had so many medical procedures done in the past that we know nothing about.

On Thursday Anna's epideral was removed so we are now trying to keep her pain subsided with oral medications. We had hoped that Anna would be able to come home on Friday (today) but she is still not eating and not even able to keep liquids down at this point. I spoke with the urologist this morning and was told that this is a critical time in her healing and she really needs to eat in order to move forward. My guess is that we’re still days away from bringing Anna home. We appreciate all the thoughts and prayers and the continued support from our family and friends.

Lily's 3rd Birthday

Lily's 3rd birthday was a fun and full day.  Her Mom shared "circle time" at school where each year of Lily's life was celebrated.  Then Lily was thrown a party in Anna's hospital room with Mom, Dad, Nanna, Eric, and Sarah.  She opened her presents and shared birthday cupcakes with Anna.  Then she was surprised when she got home with a play kitchen in her bedroom.

Anna is Moved From ICU

Anna was moved from ICU into a regular room this afternoon.  It's a private room so there will be a lot less activity.  She was allowed some water and ice chips and she really enjoyed that!  She is still fighting a fever, but everything else is going very well.
Here are three pictures, from her two days in ICU and finally in her own room.

Weekend Update from the ICU

Anna had a good day on Friday, sleeping through most the day and the night in spite of her long ordeal yesterday. The doctors and nurses at Children’s Hospital have done a wonderful job of managing her pain. Today she called for Mama and Baba when they were out of site, but was for most of the day quite at peace in spite of the strange situation she awakened to after her surgery…connected to a myriad of tubes and trapped within a hard cast from her waist to her ankles.

The cast is open in the middle so her bandages can be tended. When we first saw her we were overwhelmed with emotion. Rather than her bladder bulging out of her tummy with the mutilated result of her earlier surgery in China, we saw the lower abdomen and vagina of a little girl. It will be so exciting to be with Anna the first time she sees herself and realizes she is no longer different; that she looks like other little girls.

We haven’t seen it yet because of the bandages, but Anna has a new tummy button. Her original one disappeared when her condition developed at birth and during her earlier surgery. Dr. Grady told us (flashing a huge grin) he thinks it’s the best one he’s ever created!

The highlight of Anna’s Friday in the ICU…the thing that brought forth her wide smile…was a phone conversation with her sister Lily.

Today (Saturday) was a bit up and down for Anna. She has had fevers spiking and pain in her tummy. After an increase in some pain medication she felt better and became very talkative for awhile. Later in the day she developed a mild reaction to her latest blood transfusion which was worrisome. For now it seems mild and so we are guardedly relieved.

Sarah and Nana visited today which perked Anna up. She also enjoyed talking to Lily on the phone. Lily is anxious to visit Anna as soon as she is out of ICU.

Thank you for all the positive thoughts and messages that have been sent our way.

Anna is out of Surgery! -11:30 pm Update

After 13  and 1/2 hours, Anna is out of surgery and resting quietly in the ICU with Mommy, Baba and her nurse Nicole.  Her doctors felt the surgery went beautifully and without any complications.  It was a long day for everyone and we are all going to try and get some rest. Pamela is going to stay in the ICU with Anna and John  will sleep in the parent sleeping room upstairs. Lily is fast asleep at home with Sarah and hopes to visit her sister this weekend. Good night!

Surgery Update - 6pm

We've been updated throughout the day on Anna's progress and we're now coming into the final stretch of her surgery. Anna's bladder has been successfully augmented and placed into its right position. The orthopedic surgeons have just returned to the operating room and will be performing the bone graft and placing pins in her hips. Once this is completed, Anna will be fitted for a spica cast and sent to the ICU. If all goes well Anna will be resting in her room in a few more hours. Please keep Anna in your thoughts.

Surgery Update - 1pm

It's almost 1 pm here at Children's Hospital and Anna has been in surgery for over 5 hours. We learned this morning that during the day 18 doctors from 6 different surgical teams will be working on her.

The orthopedic team was first, and have completed the first of their two stretches. They have made cuts in her pelvis to reposition the bones. They will be back later to do a graft using donor bone to help keep the pelvic bones from going out of position again.

Now the urology team is taking their turn of doing the very complex work of placing Anna's bladder inside her body and reconstructing her female parts. They discovered early on that her bladder was not large enough to ever allow normal function, and will be  performing a bladder augmentation by taking a portion from her small intestine and her appendix to increase the size of her bladder. In doing this, Anna will have to use a catheter, but she will be able to be dry for the first time in her life!

The other doctors involved at different stages of Anna's proceedure are general, gastrointestinal, gynecological, and plastic surgical teams. We will be getting updates as the day progresses.

During the initial stage of surgery this morning, KIRO News (Channel 7) was here filming for an upcoming documentary. They interviewed us and filmed Anna and Lily several weeks ago, and will be following Anna’s recuperation throughout the following months.

We must say something about how well Anna has done over the past two days. She was very excited when she entered the hospital; she was very clear why she was here. Anna's been waiting for this day for a long time. Throughout yesterday and last night, as she endured the poking, proding, throwing up, pooping, and needles, she did it with patience,dignity and grace. When she pooped on a nurse who was changing her diaper, she giggled with glee. She’s a brave little girl…and quite a character!

Anna Goes to the Hospital

After a false start on Tuesday, Anna’s trip to Children’s Hospital has finally happened. Baba dropped Anna and Mommy off at Children’s Hospital on Wednesday morning. Anna was both excited and nervous that she is finally having her “big” surgery.

Once admitted, Anna was given an IV with antibiotics and anti-fungal medicine. She has so much scar tissue on her hands from previous medical treatments that the nurses had a terrible time with her IV. Two different nursing teams tried four times before they were successful. She was then given a liquid solution to promote bowel  movements and an anti-nausea medicine to help the medication go through her system faster. Because Anna needed to drink so much liquid, they decided to put a tube through her nose and down her throat. Her body didn’t handle the medicine very well and she rejected most of medicine.

After several attempts at keeping the medicine down, the doctors decided to go to plan B. Every 2 hours Anna was given an enema. The nurses and Pamela worked throughout the night trying to get Anna’s bowels cleared. When John arrived at 6am this morning, the doctors had still not given the go ahead to proceed with the surgery. Finally, at 7:30 we got the call and headed down to the surgery center.

Preparing for Surgery

In the past few days the reality of Anna’s upcoming surgery has begun to sink in. On Thursday I took Anna to tour Children’s Hospital with a child life specialist and an interpreter. Anna was given a cloth doll dressed in a hospital gown with an IV, bandages, and other medical paraphernalia. She was asked to draw her herself on the doll. We then spent some time role-playing the events of next week. The nurse took notes on what Anna likes to do and helped me complete a coping plan for the staff to follow during her stay.

We then toured the pre-surgery center, the operating room, and the floor where she will be staying. We also spent some time playing in the sibling play area. Anna seems to understand that she is finally going to have her “ouchy” fixed; but I am fearful that she doesn’t understand the lengthy and painful recovery process. With the help of the interpreter, I tried to get that across along with the fact that we will be with her the whole time. I wanted Anna to be assured that she will be coming back home with us; that we are not going to leave her.

We’ve also been working with Anna at home to make her feel secure. Last week we turned the guest bedroom room into her room by painting it pink, her favorite color. It was then off to Pottery Barn Kids for the quilt she chose from the catalog. I’m framing some cute “paper cut” art we bought in Guangzhou to hang on her walls. Anna helped put her clothes in the closet and her toys in her room. Since moving into her room, she’s slept through the night both nights. She even invited Lily to sleep with her last night!

The girls started their morning with a concert for Mama and Baba and then Nana and I took the girls to Seattle Center for the day. Lily and Anna spent the afternoon going on rides and playing outside. We wanted Anna to be able run and play as much as possible before the body cast makes her immobile for the next few months. Tired after a long day, the girls are snuggling together on our bed watching Little Bear fighting to stay awake.

Playing in the Back Yard