Thursday, December 3, 2009

Happy Sweet 16 x Two

I have a multitude of mixed emotions about this day. I can't even begin to put them into words.

Hubby and the girls had their last Bible study for this session tonight. They took birthday cake for a snack. Since we didn't know if they'd come home with any for the boys, Hubby thought it would be a good idea to get some cupcakes for the house. He thought this was funny:

He told the girls they were for them and their two friends who are coming over tomorrow night to sleep over. I added that they'd even get party favors since the Elmos are plastic rings. He let them believe it for about ten minutes before he spilled the beans.

You know, when we used to go to Wal-Mart when the girls were about two, Hubby would push them in the stroller while I shopped. He always took them over and they would look at toys (never asking for a thing!) and they usually ended up playing with the Tickle Me Elmo. It was their favorite thing to look at, other than the real fish, and they never had one — a Tickle Me Elmo, that is. I don't know if anyone else in the family realized the irony of these cupcakes.

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Last year after the girls' birth stories I promised I'd follow up soon with their follow up. It's been nearly a year and I haven't done it. One of my faults is that if I don't do something right away, and it's not especially important, I'm not going to do it. Well, I'm going to remedy that now.

Also, if you haven't read their birth stories you might have a little trouble following this post, but you can go back and read Part 1, Part 2, and Part 3. It's a little long, but it is a miraculous story.

I was two days from taking the girls home from the hospital without monitors. At that point they would have been off their breathing medication for one full week, and if they'd had no apnea spells then they would be free to go home without the monitors. I'd been telling the nurses for about five days that I would hear Chatty snort every once in a while. Since she was so tiny, it was obviously a very tiny sound. They never heard it and there was nothing else they saw to identify anything.

On this particular day two days prior to rooming in and taking them home, I went to the hospital to feed and visit them. While I was doing the required two minute hand scrubbing, I could see three gowned, gloved, and masked people working around Chatty's bed. That was the longest two minutes of my life. I got in there and they told me they were preparing to take her up to the PICU and quarantine her. She had developed RSV, which at the time was a very new virus, and she was having serious apnea and heart rate drops.

The snorting had been an early sign of the RSV, but since she was showing no other symptoms it would have been nearly impossible for them to have known. She was immediately so congested that she was having difficulty breathing, so she would just stop, causing the apnea, which in turn caused the heart rate drops. That's why she had to go to the PICU. She had to be quarantined because of the RSV. I found out from infectious disease that the virus can live on a dead surface for six hours. That's scary.

They put one of the little tents over Chatty's head for oxygen and Ribavirin. At the time it was a brand new treatment for RSV. Most of the time patients would receive it for three days. She had it for five and was still testing positive. At that point, even though I'd taken six showers a day between visiting the girls, I passed the virus to Sparky. They moved her up to the Pediatric floor to a room and moved Chatty out of the PICU to share the room with her (since she was better although not well). Chatty got three more days of the treatment and Sparky got three days, and they both tested negative. The best thing was that neither one had to be reventilated.

At this point things started passing a little funny in Chatty's diapers, and to make a really long story short, the doctors said that she tested positive for Rotovirus. They also qualified that with the statement that you can get a lot of false positives when you have RSV. When the girls went home, the diapers stayed weird, we sent a few to the pediatrician, and finally after a month I told him that when she only gained an ounce in a week that something was terribly wrong. He finally agreed.

The pediatrician asked about her coloring (which was yellowish). I told him that her coloring had always been different and I'd even commented on it in the NICU. The doctors and nurses always said that even twins can have different complexions. The pediatrician asked if she'd had her bilirubin checked. I told him the last time was when it started going down after her mid-December heart surgery. Then he said she was a little yellow in the whites of her eyes and she appeared jaundiced. Here are a couple of pictures of her about this time, one of her with her sister so you can see a comparison.


We went through a multitude of horrible tests with her over the next two weeks, and the ultrasound techs at the hospital couldn't even find her gall bladder (later at Children's they did and said it was small). We were referred to Arkansas Children's Hospital to see a specialist and a surgeon. I found out after we got there that they expected to see a patient that had biliary atresia (where the bile ducts constrict), which is non-correctable and would require a liver transplant.

One of the first things that was done after we got checked in and met the doctor was an ultrasound. The technician was so excited that not only did he call in two passing doctors, but he told me everything he was finding on the screen, so I knew when I walked out of there what to expect. He found the gall bladder, and then what excited him the most was that he found a cyst in her single bile duct. The reason that excited him was because it was correctable.

Chatty had surgery the next morning, the doctors had to do a lot of cutting and pasting because of the amount of damage that had been done, including leaving out the single duct and her gall bladder. The surgery was about four and a half hours, and at the time she weighed about six and a half pounds. She was four and a half months old; adjusted age due to the premature birth was one and half months.

About five days later they had to go back in during the middle of the night. They weren't sure what was wrong but she was getting worse. It turned out to be peritonitis. They cleaned her abdomen out and closed it back up. We were there a full two weeks. My aunt kept Sparky the entire time three hours north. My mom and stepdad had to make a milk run because I was pumping. It was insane.

The most disturbing thing was one of Chatty's iv's that she had. Because she was so small and her veins were tiny, she would blow them after a day or so. They'd exhausted every possible place and finally the surgeon put one in her neck. Holding your baby and feeding her while she has an iv in her neck that you don't want to make move is something that is difficult to even try to put into words.

Two weeks later some of Chatty's labs were elevated, but with medication over the next year to help the bile drain, everything started working normally. She has not had any residual effects from the cyst or the surgery.

She has, on the other hand, had four eye surgeries. Sheesh!

Here's Chatty just three months after those earlier pictures. The transformation is amazing!

Here are pictures of the girls when they were two years old. Chatty's is actually on her second birthday. Sparky was always on the move, so her pictures were all a little blurry. I picked a different one that shows her in what is now one of her favorite colors (green) in one of her favorite items of clothing (pajamas). You could always find her with a book in her hand or close by back then. She's always had such nice posture, even at two!


Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

7 comments:

Mrs Twins said...

Happy Birthday!
Sweet Sixteen,
Gorgeous girls.
Lovely babies!
So nice to watch two grow up together and the same time.
Hugs and lOve Suex

Mari said...

You've given me a big smile today! I love hearing how God took care of them when they were preemies and He still is now! Great pictures too.
Happy Birthday Chatty and Sparky!
PS - I love the cupcakes.

Bobbi said...

Happy Sweet and Sassy Sixteen!

Cindy said...

Thanks for sharing this story. God is good.
cindy

Betsy said...

Wow...what a amazing story. I know you feel you could have lost her during those first 4-5 months. They are both miracle stories, but Chatty especially. You can tell she isn't well in those first pics. Transformation is right. So glad for a happy ending!

Loved the Elmo story! ha! We always had to go by the live fish at Walmart, too! That, and pick out a Matchbox car before the real shopping started! :)

Ronnica said...

Your house is doubly blessed...happy birthday to your girls!

When I see those colorful cupcakes, I can't help but wonder what they'd do to your output, if you know what I mean.

The Stylish House said...

Kayren,
I’ve been so touched reading your story. I laughed I cried and I’m amazed what you went through. Thank you for sharing this journey. It was very uplifting.
Cathy

 
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