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Friday, March 23, 2012

3 Little Princesses

*If you have a heart, grab a tissue before proceeding*
If you were to happen upon these three little beauties happily playing in the grass with their pink balloons, you would likely never imagine just how miraculous it is that they are alive and standing in front of you. You would never imagine that one of them was given a 20% chance of survival due to a severe birth defect, one of them vomited approximately 700 times in her first year of life with no known cause, and one of them has a list of medical diagnoses longer than she is tall. You wouldn't look at them and guess that they've spent a combined total of close to 6 months in the hospital. (and let's not talk about what their combined total medical bills are!!) Their medical conditions are vastly different but they have one thing in common (well, aside from the fact that they're all adorable!)
 They are all completely dependent on feeding tubes for all of their nutrition, hydration, and medication needs. The gravity of that statement hit me when I started opening up the files to edit the pictures. To look at these girls, you would never imagine the turmoil that they've faced in their little lives. It was so humbling to look at them and know that if it wasn't for those little feeding tubes...  The three of us (their "tubie mamas") agree that as much as we sometimes resent and even hate the feeding tubes, we can't help but love and be grateful for them as well.
Alix, Alicia and I have been trying since November to find a time that we could get our girls together to take pictures of them. We had planned to do it on Thanksgiving weekend but Raya broke her arm. Then poor Lily was in & out of the hospital. Then Raya had a 6 week long cold/stuffy nose that turned into a sinus infection. THEN once they were all healthy-ish (knock on wood), we had the laughable task of finding a day and time when none of the girls had any therapy or doctor appointments and that didn't interfere with anybody's nap schedule. Finally after 4 months of patiently waiting for the stars to align, it happened and we were able to get them together for the first time last Friday. It was pure joy for all of us to see our sweet girls playing together.

I suppose proper introductions are in order. :) Meet 20 month old Miss Whitney K:
When Whitney's mom Alicia was 21 weeks pregnant, an ultrasound revealed that something was not right. After seeing 5 different doctors, they were finally given the devastating news that their daughter had a right-sided Congenital Diaphragmatic Hernia. Approximately 2/3 of Whitney's diaphragm was missing and as a result, her liver and intestines were developing in her chest cavity rather than in her abdomen where they belonged, leaving little room for her lungs and heart to develop properly. The outlook was not good and she was given a 20% chance of survival.
At birth, Whitney had to be intubated immediately because her defect prevented her from being able to breathe. The next day, she was placed on ECMO (heart/lung bypass) and she remained on advanced life support for 6 days. At 7 days old, Whitney's hernia was surgically repaired with the use of a gortex patch. Alicia waited 15 days to finally be able to hold her baby girl and 3 weeks to hear her little voice. After 56 days of extreme highs and lows, Alicia and her husband Thomas were able to take Whitney home. Eating and gaining weight were always a struggle, and at 5 months old, Whitney needed a feeding tube. Due to her CDH, she is at high risk for complications from simple viruses like colds and flu. She has struggled with oral aversions, vomiting, pulmonary hypertension, GERD, and other issues as a result of her rough start to life, but one thing is for sure. Whitney is a survivor in every sense of the word! She has a bubbly personality and deep brown eyes that sparkle and light up a room. And let's not forget that luscious hair! She is very smart and I was totally impressed by all the sign language she was using the whole time we were doing the photo session. We ♥ Whitney!
(To read more about Whitney, click here and here.)


And this is 14 month old Lily:
Lily's troubles began shortly after birth. She was unable to suck and swallow without her mother Alix going to extreme measures to help her. After many weeks of struggling just to try and get enough calories into Lily, the struggle to keep the calories in became increasingly difficult. Lily was miserable. She cried and screamed for hours on end. Her parents were exhausted and overwhelmed. In spite of everything they were doing to help her, she was weak and malnourished. At birth Lily weighed 6 lbs 8 oz and by the time she was 4 months old, she weighed only 8 pounds. There was growing concern over the risk of brain damage due to malnutrition, as well as other complications. At that point, Lily needed a feeding tube.
During her first few months, the list of Lily's medical problems kept growing. Things like laryngomalacia, dysphagia, failure to thrive, immune deficiency, motor delays, oral aversion, silent aspiration, low muscle tone, Sandifer syndrome, and eosinophilic gastroenteritis were added to her chart. With all of these diagnoses came more questions. Why did she have so many things going on in so many different areas of her body?
One possible explanation kept coming up, and it terrified Lily's parents. After having a muscle biopsy done, it was confirmed that Lily has mitochondrial disease. This means that the mitochondria, which are the powerhouses of the cells that make up our bodies, do not convert vitamins and nutrients into energy in a way that is sufficient for the cells to perform their proper functions. If the cells don't perform their functions, tissue damage occurs and the systems of the body fail. There are different types of "mito" and it affects everyone who has it differently, but it can affect every system in the body. There is no cure and it is progressive. No one can predict the rate at which it will progress.

What this diagnosis means for Lily in the coming years is uncertain except that she will continue to face many struggles with her health. Mitochondrial disease is cruel and unpredictable, but Lily is a fighter. Her parents are living on hope and faith, of which they are great examples. Amid the doubt & uncertainty of what her future holds, she continues to exceed the expectations placed on her by those in the medical community. One of her most recent and most exciting accomplishments was learning how to walk. Being around Lily is pure joy. We ♥ Lily!
(To read more about Lily, click here.)

Now I know that a lot of this sounds horribly depressing. It kind of is. The thing about these girls is that they are not defined by their 5 pound medical charts, or by anything in them. They are little girls with big spirits who are doing the best they can to rise above their physical challenges. Their personalities are so much fun and their smiles and laughter can quickly make you forget about the pain and difficulties that they go through every day.
*dabbing eyes*

I had asked Raya earlier in the day if she wanted to go see Whitney and Lily and she said, "Yeah! Ah-see Wet Willy!" No matter how much we practice, they have become collectively known as Wet Willy. :) Or Willy and Whit-na-nee. Either way, it's cute. :) I love the age when kids get old enough to start having friends, and Raya knows that "Willy" and "Whit-na-nee" are her friends. As I've been editing these pictures, Raya will climb up on my chair (when someone leaves the baby gate open and she sneaks upstairs) and sit on the arm of the chair and say, "Wet Willy! I wye Wet Willy!" Translation: Whitney and Lily! I like Whitney and Lily!
The girls are all very proud of their tubies and they're pretty darn smart too. We asked them "Where's your tubie?" and in unison, they all lifted up their shirts to show us. Raya had never seen a feeding tube in someone else's belly before and the look on her face when she saw them was a mixture of familiarity, confusion and excitement. She thought it was pretty neat! :)

I talk a lot about the Feeding Tube Awareness Foundation and FTA facebook page on Raya's blog, and there is good reason for that. The website has just about everything I wish I had known from the beginning of our feeding tube journey and is constantly expanding to include more resources and helpful information for tubies and those who care for them. What the website doesn't have, all of the wonderful people who frequent the facebook page make up for with the experiences and knowledge that they freely share with each other. At risk of sounding melodramatic, those resources have been tremendous blessings to me and subsequently to Raya, whose care has involved less trial and error since I came across them. :)
One of the greatest blessings from FTA has come in the form of new friends who "get it" because they are living it too. I hadn't really thought about it until I saw how much Raya was enjoying Whitney & Lily, but Raya has been blessed with friends who "get it" too.
We may not be able to get them together very often, but I'm so thankful that these girls have each other and SO thankful for their sweet mamas!

Trying to get 3 girls age 2 and under to look in the same direction at the same time and hold still long enough to click the shutter button is pretty funny. We got a lot of pictures like this:

And this:

 And this:

As we were chatting and tossing around medical terminology that would have made all of our heads spin a couple years ago, all the people passing by would look at the girls and comment on how cute they were in their little matching outfits. I wanted to tell all of them, "No, you don't understand! Yes, they're cute but don't you realize that you're looking at MIRACLES?!?"
And that's exactly what they are.

7 comments:

  1. Sending lots of warm prayers and wells wishes to three beautiful fighters and the amazing mommies (and rest of the families) that take care of them. I am so happy that the 6 of you have each other.

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  2. What is the things that they have against their skin (between the tube and their skin)? We tape guaze on, but what do you use?

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  3. This is beautiful!! Both the pictures and the stories. I think one of the hardest parts for me about having my own miracle is NOT having other moms to share these challenges and triumphs with. I am so thrilled that the 3 of you have found each other!! I pray that I will be able to connect with other tubie moms as well.

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  4. Ok yeah I cried. :) Thanks so much this is BEAUTIFUL!!!!!!!!!!!!!!!!!
    You are AWESOME!!! I love love love it! I am so glad we three found each other! and so glad our girls have each other too! :)-Alix

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  5. Wow this is so beautiful Brandis! Amazing photos and words! We are so grateful to have you and Raya (and Alix and Lily!) in our lives! Thank you so much!

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  6. This is so beautiful! These girls are sweet little miracles! I just cant stop the tears it touches me so! Thank you for shareing!!!

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  7. AAAHHHH. How cute?!?! I have only been away less than 2 months...how can Raya look like such a big girl already?! I love love love how in some of the pictures she looks like she is showing the others how everything is done and looking over them. I think we are in need of a visit...

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