Happy Fourth of July

We really enjoyed the Fourth of July. We started off by going to a Fourth of July carnival for Fairfax County. There we had ice-cream and rode a couple of rides. Later on we went to our friends' place for dessert and watched fireworks on their roof. We had a couple of mishaps on the way including a major diaper blowout and Max leaving his shoes in the shopping cart at the grocery store where we bought ice-cream to bring to our dessert night, but things turned out well in the end. It took a couple of days before we got around to using our sparklers and snaps, but when we did, the kids enjoyed that too. Here are some pics:

More Baby Camryn Pics

These beautiful pictures of Camryn were taken a week ago by my friend Lyndsay. Camryn is sleeping in more of these pics because until just a couple of days ago, she slept all the time. Now she is starting to be awake a little more. In these pics of her, she was 3 weeks old. In the pics in the last post, she was 4 weeks old.

Pics of Baby Camryn

I left baby Camryn with my friend Carina today while I picked up Maxwell from preschool so I could avoid exposing her to germs. In the short time I was gone, Carina was able to take these beautiful pictures of Camryn.

Grateful

My sweet baby is getting well.

Last week after her bilirubin went down, she still had several concerning symptoms. The docs all thought she had a serious problem. The neurologist and the pediatrician tested her for a million different things. She had 2 X-Rays, lots of blood draws, 4 IVs (they fell out and had to be put in again--each time taking about 2 hours to find a vein to put in because she is so tiny and after the last one, they told me that she had no good veins left because of all of the bruising), 3 spinal taps, an ultrasound of her brain, sedation, had respiratory problems and apnea as a result of the sedation and had to spend the night in the PICU, an EKG, an MRI, 2 days of drinking nasty soy formula that made her constipated so she needed suppositories, several days of anti-biotics, several days of anti-viral medicine, and lots of exams. She isn't even due for another 2 weeks. She should have been safe and sound in my tummy, but instead she had to go through all of that. Some of the things she was tested for are brain damage, meningitis, HSV, tons of metabolic disorders, a weird thing called Galactosemia that basically causes brain damage when you consume galactose (which is why she was on the soy formula until they got a negative test result), and tons of other stuff. Everything so far has come back negative, and in the meantime she has gotten her color back, started eating like a champ, become more alert, gained muscle tone, and started acting like a normal newborn.

Two days ago, the neurologist saw a lot of improvement and said that there was a chance that it could be something temporary. The pediatrician didn't think so. She showed a lot more improvement since then. Today, the neurologist said her muscle tone and things were very much improved and that it was something temporary. Then, the pediatrician came and told me that if one last test came back negative that they would send her home on Friday when we get the results back. She mentioned that there were a couple of tiny things in the MRI that may or may not be something, so we should monitor her development very carefully and watch for milestones, but that the neurologist thought it was minor enough and common enough to see that, that he told her that what he saw is probably nothing. They want to do one more MRI in a month.

I feel so blessed that my little girl is healthy again, and I am so proud of her for the progress she has made. I also feel very grateful for all the prayers from so many people. Through all of these trials over the last couple of weeks, I feel like I have come closer to my Heavenly Father and more grateful to Him for my perfect little girl and for my family. I am grateful for temples so that I can be sealed to my family for all eternity. I am grateful to have three beautiful children. I am also grateful to have a wonderful, loving husband who has been such a great support to me through all of this. Thank you to everyone who prayed, fasted, babysat, made meals, and showed support.

Thank you for your prayers. They helped.

Back in the Hospital

Camryn is back in the ER again. She wouldn't eat willingly at all starting the night before last. I had to force-feed her with a soft bottle that worked like a dropper when I squeezed it. That continued all day yesterday. I took her to the urgent care, and they said to watch her for a while and take her to the ER if it continued. They told me to make sure to force-feed her at least 2 ounces every 2 hours. I fed her at midnight, and then my mom offered to take the 2am feeding so I could sleep longer. I asked Chauncey to set an alarm for me, and I went to bed (Camryn is so sleepy from the Jaundice that she doesn't wake up on her own to eat at all).

She got even worse, and her belly got pretty bloated, so at 2:30 my mom and Chauncey decided to take her to the ER. They thought that since I hadn't slept more than 2 hrs since last Tuesday (before my fall and going into the ER and all that drama), that they would let me sleep. They left a note.

I am ashamed to say that I slept until 6am. That's when Chauncey got home from the ER. My mom stayed. I asked where the baby was and was shocked to find out where she was. At first I was annoyed. But I know that they meant well in letting me sleep. At least this time when I got to the ER, I didn't have to watch her go through anything. She was already under lights when I arrived.

Her biliruben went back up to over a 16, which is the number that sent us to the ER to begin with on Monday. The doctor isn't sure why her biliruben went back up. She said that usually by this age, they can regulate it on their own. She is testing her for an enzyme deficiency. They will test her biliruben again at 3. The pediatric ward is full, so we are staying for most of the day in the ER.

Coming Home!

Hooray! We get to come home today! They took Camryn's blood again this morning, and her labs came back showing that her bilirubin had gone up, not down, so the resident told me that we may have to stay an extra day. But then the attending physician came and said that we can go home because the level hasn't risen enough to concern him. We just have to go to her pediatrician for another test today or tomorrow. Hooray! I can't wait to get out of here. 1 week of being in the hospital is too much!

My Poor Baby

Our beautiful little Cameryn Emily Bratt was born on Friday, April 22. She had higher levels of bilirubin than normal, but the hospital monitored her and decided to let her go home with us on Sunday, with the stipulation that I needed to get her tested again the next morning. I took her in on Monday, and the pediatrician said that he thought she would be fine and be able to stay home. She got her little heel pricked again at the lab, and we went home. That evening, the doctor called us back and said that we needed to rush her to the ER to get her ultra-violet light therapy because her bilirubin level had risen to 16.8. We took her in, and they tested her again in the ER. Then they let me know that her level was at about 18. Yikes! I believe that the level at which they do a blood transfusion is around 21.

Maxwell had had light therapy when he was a few days old, but they just ordered some equipment to be sent to my house, and I took care of him myself. But here, everything has to be done in the hospital.

They hooked my little one up to an IV, but it took them FIVE ATTEMPTS before they were able to get it in. They stuck needles in each of her hands and arms to no avail, and then they finally got one into her tiny leg. I felt sick watching them hurt my baby and listening to her scream.

They took five flasks of blood. Her eyes rolled back when they were taking the last bit. They said she was dehydrated. I wanted them to leave my baby alone, but I knew that she needed the light therapy, so I let them continue.

She had a little bit of orange spit-up on her clothing, and so the doctor ordered an X-Ray for her in case of a bowel obstruction. I was really nervous about such a young baby getting an X-Ray, so I asked her if that was really necessary. She said they needed to figure out what was wrong. We then went to get the X-Ray, and the tech made me wear a big, thick lead vest. He told me to put her down on the table. He walked to the back of the room. I said "Wait, aren't you going to put a vest on her?" He said that you can't wear a vest for an abdominal X-Ray. I asked "But is that safe? Won't that mess with her fertility or something?" He said "No. It's perfectly safe. In fact, it's no worse than eating something out of the microwave." I had a hard time believing that. Nobody makes me wear a giant lead vest when I use my microwave. If it's so safe, why did I have to wear a vest?

I felt sick about everything. I felt so bad for her. She wasn't even supposed to be born for a few more weeks, and here she was being stuck with needles, IVs, blood draws, and X-Rays. It must have been so traumatic for her--it was for me. Finally, they sent us up to the pediatric unit and got her light therapy started. We had been at the ER for about 3 hours before she got any lights, so I was worried about the wasted time. They came and took her blood again every three hours. They told me to only take her out of her incubator to feed her, and to do so every 2 hours for up to 15-20 min.

I was up all night. I took a couple of short power naps in between the feedings, but with nurses coming in and out of the room, getting up to put her eye-coverings on every now and then, the bright florescent lights, and the beeping monitors, and listening to her scream when they took another little flask of blood from her heel every 3 hours, I only got about a total of 1 1/2 to 2 hrs of sleep.

Her level went down to 16 something by 3am, then 14 something by 9am, and then 13.6 by lunchtime. They told me that if her levels went down enough by 8pm tonight that they would turn off the lights and just monitor her overnight, and that if her level stayed down without the lights, we could go home in the morning.

Unfortunately, they came in and told me that her level is exactly the same that it was from the blood draw that was 7 hours before: 13.6. Luckily, that's not a terrible number. It's close to the point when she can turn off the lights. But the scary thing is that it didn't go down at all in 7 hours. They are doing another blood draw at midnight. I have now been living at the hospital since last Wednesday. I went home Sunday evening and spent one night, but tomorrow will make one week away from my boys. I am hoping that it will go down so I can take my baby home and see my little boys!