Monday, February 28, 2011

Peas, Blueberries, Chicken Soup, and the Unknown


Sent by Nicole late on 2/27/11

What do peas, blueberries and chicken noodle soup all have in common? Wrenn loves them more than squash or green beans. She has done another 180 degree tyrb and I just can’t explain how or why but apparently God heard me every time I connected her G-tube button to the feeding bag; “Please make this child love food and start eating,” I would chant.

Last week Wrenn made great strides and is now eating every two hours. It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds. On average she eats 4 -5 jars of baby food a day and hasn’t had any issues. She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon. I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.

The OT specialist was shocked when she worked with Wrenn last Friday. And of course, I’m always amazed week to week. Wrenn even munched on a Ritz cracker and did fine.

With such absorption, we are increasing her rejection medications quite a bit. The transplant coordinator told me it’s not unusual to be on twice the normal amount when a diet has drastically changed like Wrenn’s has with solid food. Once we run out of breast milk she will be on Ensure and so the digestive tract will again change along with the levels.

Wrenn is still not sucking but the therapist thinks she’s VERY close. That will be a huge day of celebration for us!

We chose to do the transplant so Wrenn would live as normal a life as possible. No cords, no plastic contraptions, basically no strings attached; that includes the G-button, which is GREAT to have while learning to eat but I want her to be all baby.

I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro. She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste. Food and medications are absorbed differently when given by mouth as opposed to the G-tube and so it’s going to be a couple of months before she can take all of her medications twice a day. Once Wrenn proves she can eat, gain weight and swallow medications without any problems, the G-tube is history.

Right now we are down to eight medications in the morning and three medications at night. We have just three plastic cups holding the medications and I can draw them up in my sleep. Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day. He tickles her and even says, “No Wrenn” when she starts pulling on her cords. I love when they sit together and play. Everything seems normal and perfect. I want it to be perfect forever. Those are the times I ask for a guarantee. The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness. It’s so hard not going there and it will always be near the front of my mind. How could it not!

Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position. I feel once she masters this developmental milestone she will be crawling very soon. The other thing she started doing last week is putting weight on her feet and even stands like a big girl for a second or two (with help of course!) All things she wasn’t doing a week ago.

Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for March 14th and 15th. As soon as those results come back the team will determine when to take out the broviac and surgically insert the port.

A Plea for Emily

Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.
Emily was diagnosed with Ewings Sarcoma of the skull/brain in Feb. 2009 when she was just 10 years old. After 2 brain surgeries, 14 rounds of chemotherapy, and 6 weeks of proton beam radiation, she enjoyed one year of remission. She was recently diagnosed with a recurrence. We pray for strength, courage and healing for Emily. If you can donate, please do so here:

http://www.emilywilson.myevent.com/

And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:

Emily Wilson: Strong and Courageous

Thank you so much!

Monday, February 14, 2011

In Wrenn Time


Sent by Nicole 2/14/2011

The one thing I know from this entire journey is that I don’t like to look back and I certainly don’t want to GO back. Going forward has been much better and I feel myself getting more selfish every day. For many months Wrenn was very sick in the NICU and then recovering from major surgery. Now she’s my 10 month-old baby girl, who I want to be normal in every way possible. It’s what every parent wants when they hear they’re going to have a baby. "Healthy" is what everyone hopes. I look at Wrenn’s tiny toes and they remind me that she’s still a little baby. It feels like she should be 4 years old by now. She also possesses a maturity about her that I can’t quite explain. She’s been through so much and pretty much did it all on her own. I can’t even imagine taking credit.

I ask God every night (with Tanner’s help) to continue healing Wrenn’s lungs. I also ask that she eat on her own so we can discontinue feeds through her G-tube. The therapist continually reminds me that Wrenn is really three months younger. (Around 6.5 to 7 months old). She was born four weeks early and then spent two full months practically unconscious. The therapist assures me that all developmental milestones will be accomplished but in ‘Wrenn Tme’, and that Mommy must be patient!

In the last four weeks Wrenn has had ups and downs in her therapy. She decided after two weeks of trying baby food that she was done. She wouldn’t open her mouth for anything and if it meant turning blue she was okay with that. She would smirk and it cracked me up. I swear she’s MUCH older than 10 months. TOO SMART! The therapist said to quit giving her baby food. This depressed me because I wanted it all to work out nicely. I wanted to move forward but the therapist said that sometimes you have to take a few steps back in order to go forward. (How many times have I heard this???--Ha Ha). This made sense to me and even the therapist could tell that we were BOTH getting frustrated and needed a break.

The next thing the therapist suggested was that we take another look at the volume she was getting from the G-tube feeds. At the end of each feed Wrenn gagged and cried, so we cut back on the amount but added a feed at midnight. (We are hoping this increases her weight to where it was.) According to Wrenn’s doctors in Clinic, she must gain or maintain each week since her body is still healing.

The next thing that happened was a miracle, I think: Timing is everything, I now realize. Wrenn was getting her four front teeth and started chomping pretty hard on teethers and anything else that would fit into her mouth. I capitalized on this and presented a baby bottle, which she actually loved. She chews on the nipple and the milk slowly escapes and she doesn’t gag or choke on it like she did four weeks ago. AMAZING in itself that she WANTS to drink and LIKES it. We've even given here Tylenol by mouth a few times and she did great! The therapist is working on getting her to suck the bottle now, which is extremely important for the rest of her development, including learning to speak. It all ties together, the therapist explained. Apparently, skipping natural developmental steps isn’t a good thing.

So last Friday night the therapist was amazed at Wrenn’s progress in just two weeks. Wrenn welcomed baby food with a spoon, and then didn’t mind any type of stimulation in or around her mouth. The therapist felt that Wrenn would be eating sooner rather than later. This made me smile and I felt like we were finally making progress.

Wrenn is also getting stronger through her trunk. She sits up for long periods of time, rolls all over the floor, but the biggest thing is that she reaches out for her toys. Before, she was more motivated by people, their voices, and their facial expressions because that’s all she knew from birth. Now she wants everything we hold in our hands. She grabs for Tanner’s toys and is especially excited about cell phones, which is a BIG NO-NO, since they carry germs. Her aggressive curiosity might cause her future illnesses or rejection.

The therapist said the biggest thing that Wrenn has going for her is that she is very interested. She is a mover and a shaker and WANTS to run before she walks. The therapist said that some babies don’t show that burning desire and so their therapy slows. I’ve been told from the beginning that girls are the best fighters. Wrenn is a good representative.

There is one thing that Wrenn does NOT like and that’s when I try to hold her hands. She pulls away in an untrusting manner. This behavior came from living in the hospital where she associated touch with negative actions like being held down when the nurse put in an IV, or when they changed her broviac dressing, which hurt because they had to pull the tape off of her chest. (The dressing is still changed every 5 to 7 days here at home but we place toys in her hands and she no longer cries. The therapist said to take her hands and caress them so she starts associating positive touch.

Keeping Wrenn germ-free is proving to be our biggest challenge and I’m still not sure how we’re going to live in a bubble. It’s very difficult with Tanner but I keep thinking it’ll all work out somehow. Again, I try to forget that I can’t plan too far ahead. The future is so unknown that to have it all figured out is lying to myself as well as the rest of us. One day at a time. One cold at a time. One flu season at a time. Just let her heal and develop, I whisper to myself each day.

Wrenn has recently discovered that Mommy sometimes leaves the room. It doesn’t take long for her lower lip to quiver and then she cries. It makes for a tricky day. Even in Daddy’s arms she stretches her neck in search of me with pouty lips.

Monday Wrenn has Clinic. She’s do for immunizations. On Thursday she’ll receive her monthly infusion, which boosts the immune system to battle flu season. I was told that the broviac will probably come out in the next couple of weeks. The surgeon will put in a new port that can be accessed underneath her skin. Like the broviac, we could have potential issues and there’s some maintenance we’ll have to learn.

Tanner’s been great! He loves interacting more now that Wrenn’s sitting up and grabbing for toys. He randomly kisses her on the head and when she cries he says in his little mousy voice, “You’re okay, Wrenn.” When I lay on the floor beside Wrenn he shoves his pillow underneath my head and spreads out his Toy Story blanket over us. He then joins us on the floor and starts giggling, which makes Wrenn smile and then the two of them totally melt my heart. Time stops in these moments, they are all priceless.

Not every day is an easy day. Not every day is a hard day. But every day is certainly a mystery. And for Wrenn, everyday is a gift! To everyone on this blog, we continue to thrive from your support as our journey continues. Our extended web family is just as important to us as our new family of doctors here in St. Louis. Your prayers have and are always answered, in Wrenn time.

 

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