Road to Recovery ( A brief summary of the scariest two weeks of my life)

Lilia in one of the many smocked dresses her Mama Gia has made for her.
Cliff was able to give her her name and blessing at the hospital.

I am finally feeling like I can talk about this a little bit. I am much too tired to attempt to revisit all of the details right now but I realized the other day that a lot of my close friends have been in the dark these past two weeks when it comes to Lilia and I would like to remedy that now.
On the morning of Lilia's two week doctors appt (She was actually only 12 days old) I thought she felt really warm when I was nursing her and so we took her temperature. She had been fussy all night and the entire day before but the last time we took her her temperature it was normal. This time it was not. She had a fever of 101 at our house and when we got to the urgent care center it was actually 102 and her breathing was shallow and labored. The doctor on call decided that she needed to be sent to a hospital immediately as Atsugi did not have the means to treat her. I went with her in the ambulance to the Japanese hospital in a state of mind-numbing fear fighting back tears. We were admitted to the hospital after she was tested for the "swine flu" and here is where things got even scarier.
We had an interpreter with us and although Yoriko has been truly wonderful it is agonizing to have to wait for a translation of what is going on when your child is in critical condition. Again, I don't want to revisit all of the details of that particular day right now but here are some of the key points:

Wednesday May 27th
- Lilia was admitted to the Japanese hospital and tests began immediately to try and determine what had caused her high fever.
- They drew blood, took x-rays, and did a spinal tap.
- They started antibiotics after discovering that she had an extremely high white blood cell count (indicating infection.)

Thursday May 28th
- She had an abdominal ultrasound and a CT scan
- It was determined that the infection was bacterial when her white blood cell count dropped after administering antibiotics.
- further testing revealed that the bacteria was in her mucus, umbilical cord stump, and her blood (sepsis)
- Antibiotics were narrowed down to specifically treat sepsis.
- They also started her on gamma globulin which was a little scary because we had to sign a consent form. (It's made from human blood which always come with risks including the body's rejection of said blood)

Friday May 29th
- The bacteria in her blood is determined to be Group B Streptococcus (GBS)

At this point we began to see results from the medicine and improvement in Lilia. I absolutely credit this to blessings that were given, prayers that were answered, and fantastic medical attention. We weren't entirely out of the woods yet but we had a lot more hope. Upon finding out that the bacteria was GBS we also had a mystery on our hands. Here are some facts and statistics about GBS:
- All pregnant women are tested for GBS during their pregnancy. I was tested at 35 weeks and my test was NEGATIVE.
- When a woman tests positive she is simply treated with antibiotics during delivery and the child is usually fine. 20-25% of women are carriers of this bacteria. Most never show any symptoms. Apparently you can be a carrier on and off throughout your life.
- There are two "kinds" or manifestations of this bacteria in infants. If the child shows symptoms during the first 7 days (week) of their life then it is determined that it came from the mother. If they show symptoms after the first week then it is called "Late onset GBS" and only 47% of these infants contracted the bacteria from their mothers. It is mostly unknown where the other half of these infants get the bacteria.
- GBS is extremely rare in infants. It's something like 3.3 out of 10,000 infants contract this bacteria and late onsent is even more rare. Only 15% of that 3.3 have late onset. Lilia's case is/was late onset.
- If it is not caught early on, 50% of infants with GBS do not live.

Did that get your attention? I know most new parents don't get much sleep. We haven't gotten much sleep

So here is the crazier thing. Our doctor, Dr. Miyaji wanted to have me go back in and be tested for GBS again. He said it would not prove too much, but if it came back negative again we would have to notify Yokosuka (where I gave birth) of the situation in case of a contamination problem on their part. I went back in for the test last Thursday. We got the result today. It was POSITIVE. So what does this mean? Did I have a false negative before? Did I pick of the bacteria sometime between 35 weeks and now? Did Lilia get it from me? If she didn't get it from me, then where? It doesn't really make a difference at this point. The antibiotics are working and she is definitely getting better. It's just scary. These past two weeks have just been absolutely horrifying. Japanese hospitals have very strict visiting hours and they don't allow you to stay over night with your child. Every night at 8pm we have to say good bye to her. The first few night were just .... awful. I can't think of a better word right now. I was so afraid I was saying goodbye for good. Even two weeks later it hasn't gotten much easier.
I have been able to visit her from 10 am to 8pm each day although Cliff and my mother are not able to as early as I am. Breastfeeding mothers are welcome from 10am-8pm but everyone else it's 2pm to 8. I have been getting up every 3 hrs each night to pump so that I will have milk for the nurses to feed her the following night. I am grateful that I have still been able to feed her. I am even more grateful that she should be able to come home in a week. Dr. Miyaji said that as long as her blood test results are clear this Thursday, they should be able to discharge her on the 15th.

I just want everyone to know that I am very grateful for their love and support and prayers. I KNOW that prayers have been answered and I truly feel that my family has experienced a miracle. I want to thank everyone in their concern for their patience as well. This has been a very difficult time for me and I couldn't talk about it right away.