Friends of Elena

Elena Esperanza Perez

Elena

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We're trying to help Juan and Lindsay (Olech) Perez from Cary, IL with their mounting everyday expenses, which have occurred since their daughter Elena was born on 5/24/08. Elena was in the hospital for most of the first year of her life. She was born with multiple internal anomalies and has had many set backs. She and her identical twin sister were born at Lutheran General and at 4 months of age Elena was transported to Children's Memorial. Elena has already had 4 major surgeries and 8 trips to the OR. On top of all this, Lindsay lost her job while she was on maternity leave. As you can imagine, this has been pretty hard on Juan and Lindsay, as well as Evie and Vanessa. We're trying to help them out in any way we can.

Elena and her family

Here are some recent CaringBridge journal posts by Lindsay:

SUNDAY, MAY 24, 2009 6:34 AM, CDT
HAPPY 1st BIRTHDAY VANESSA AND ELENA!!!

I can't believe it. I really don't even know what to say. It's hard to believe it's been a year. We never gave up hope during all of Elena's struggles, and while we still have a very, very long road ahead of us...we are celebrating their FIRST BIRTHDAY TOGETHER!

As I look back and think- Wow, this has been the worst year ever, I have to correct myself. All three of my children are alive and thriving.

Can it get any better?

Galati's (in Cary) is opening early for us today so we can have a small celebration...just us and my parents. It will be Elena's first trip to a restaurant. The only reason we can even do this is because they are letting us in before anyone else gets there so we don't have to worry about germs. Evie is very excited to take her sisters somewhere other than to the hospital.

Another milestone...Elena had food yesterday. I gave her carrot juice in her g-tube. She has been tasting food by mouth for months, but has never actually "eaten" anything other than breast milk and Pedialyte via her g-tube (she gets 60 mls of Pedialyte per day for hydration). I e-mailed the dietician and told her that I wanted to start giving Elena fruits and vegetables. Even though it's not necessary for weight gain, I want her stomach to become accustomed to food in preparation for when she can finally eat after her operation. It was a bit weird...normally when you try new foods with a baby, you do single foods for a few days at a time to rule out allergies. I wanted to give her veggies first, but it's difficult to find single vegetable juices. So, carrots it was.

Dr. Reynolds told me that I can give Elena cake on her birthday (by mouth, not by g-tube!!). I'm a little nervous. I know everything just comes out of her neck, but I'm worried that the texture is going to make her gag. Maybe the taste of sugar will override her oral aversion. I'll let you know. I am planning on posting some new pictures later, so check back.

As I write this, Elena is running in place in her crib, laughing. She has her trach collar tubing (the blue tube) in her mouth and is attempting to lift the mask off from covering her trach and put it in her mouth, too. I compare this exact moment to where we were this time last year, and I am truly amazed. I haven't cried yet today, but it's not even 7 am yet. The day is still young!

Happy birthday, girlies! I love you so much, and I am more proud of you than you can ever imagine. You, too, Evie!! All three of you have been through much more this year than any child should ever have to go through in a lifetime. Stay strong! Here's to a healthy 2nd year of life! Keep fighting, Lainey baby (toddler?!)!



MONDAY, MAY 4, 2009 3:29 PM, CDT
It has been brought to my attention that I may have confused a few people along the way with my explanations of what is going on with Elena, so I would like to try to explain things a bit more clearly. I have spoken with several friends who are totally confused, so I'm assuming I have confused many others as well...this journal entry is just to help those concerned about our baby better understand what is going on with her. I know so many of you regularly check on her progress, I suppose it would be nice to really understand what exactly it all means. So here goes...it's a long one...

EA/TEF - Elena's esophagus is not connected to her stomach.

The EA (Esophageal Atresia) portion refers to the fact that her esophagus started out normally from her mouth, then suddenly ended in a pouch. There is no connection to her stomach.

The TEF (Tracheoesophageal Fistula) refers to the lower part of the esophagus...it came up from her stomach and connected into her trachea instead of connecting straight from her mouth. This was surgically disconnected when she was one day old.

Attempts were made for months to stretch the upper portion of her esophagus in order to surgically connect the two ends. These stretchings were called dilatations...a rubber catheter was inserted into the upper end of her esophagus pouch through her mouth until resistance was felt. This was done hundreds of times at the advice of her previous surgeon. After a second failed attempt at a repair last August, the decision was made to temporarily re-route the esophagus because although she had a tube in her mouth to constantly suction out the secretions, she was aspirating them (breathing them into her lung).

The upper portion of Elena's esophagus was surgically brought out of the side of her neck...this is her Spit Fistula (or cervical esophagostomy). There are no tubes or drains, but rather just a simple hole on the left side about an inch from her trach. All of her spit and anything that I feed her by mouth comes out of this hole and drips all over the place! We have become creative in our attempts to contain the mess, but ultimately, Elena is even more creative in removing them! I used to place cloth diapers under her head in her crib so that I wouldn't have to change the sheet twenty times a day...now she likes to reach over with one hand, grab the cloth, roll back the other way, completely covering her face with it. Then she falls asleep (see attached photo). I guess it's games like that which make me glad that she breathes out of her neck instead of her mouth!

Which leads me to her tracheostomy. Elena has another hole in her neck which opens into her trachea (windpipe). In this hole lies her trach tube. It is a little breathing tube (about the width of a straw) with wings off to the side for attaching trach ties that wrap around her neck, holding it in place. I change the trach once a week, but change the ties several times a day (because of the spit fistula). Her actual trachea is collapsed, so the trach creates a secure (but easily removable...scary!) airway. When I say that I suction her, I have to insert a small catheter into the trach and suction out the secretions from her lung (she only has one lung...pulmonary hypoplasia). I suction her many times throughout the day. When E coughs up her secretions, they sit in her trach, blocking her airway.

Lainey eats through a gastrostomy tube...a little tube that is inserted from the outside into her stomach and held in place by a balloon inside of her stomach which is inflated with water once it is in place. When she was born, her intestines weren't connected to her stomach either, then she had a gastrojejunostomy.

There are some other things, too, like the bleed in her brain, the malrotated bowel, the broken bones, pulmonary hypertension, Horner's Syndrome, hydronephrosis, etc...Imagine explaining all of this when they ask for her medical history! I always say, she looks awful on paper, but if it weren't for the trach or g-tube, she looks just like Vanessa! Then throw prematurity into the mix...these girls are both doing amazingly well!!!

We will see Lainey's surgeon in a few days. I'm not sure when she is planning on doing her big operation, but I'll know more in the upcoming weeks.

I hope I didn't further confuse everyone. As always, thank you so much for your concern. We love hearing from everybody. Your messages, e-mails, phone calls, etc., help us get through the day when things aren't always going so well. Sorry, I'm not the best at getting back to people or sending out thank you cards...it really is great to know that we still have sooo much support!

And one more thing- I mentioned how Elena is discovering her voice on her own...Well, we have taken that a step further. If I briefly cover the opening to her trach, she can actually yell! The twins sound exactly the same!!



WEDNESDAY, JANUARY 07, 2009 11:01 PM, CST
ELENA'S HOME AT LAST!!

She came home yesterday. Today was very rough, but there were a few moments when the twins hung out in their bouncy chairs together, and Evie sang songs and told them stories. My dog hasn't left E's side...little did she know there was another one of those babies out there!

We're so proud of you Lainey!!!!

Ok, gotta go!



SUNDAY, DECEMBER 14, 2008 07:12 PM, CST
Here's the news...

We had all three of our girls together for an hour and a half today!!!! I have been dreaming about this moment. The babies weren't crying, but everyone else was! There was something magical about having them together, as you can see in the photos. Elena is still a little on the skinny side, but their size difference was not really that noticeable. Her weight gain has been quite impressive since her trach, though.

I remember just barely over two months ago, sitting in that same room at 4:00 in the morning, waiting to hear from the doctors as to whether or not they thought Elena was even going to make it through the night. And there we all sat today- smiling, laughing, crying tears of joy. A family.

Earlier in the week, the doctor told me how she really believes that twins have something very powerful between them, and that as long as no one is sick, she believes that the importance of their togetherness outweighs the risks of letting Vanessa on the unit. I agree 100%. You should have seen the way Elena looked this morning. She is an absolute miracle, and her sisters are only going to help her thrive. It was very apparent today. My cheeks burn from smiling so much!

During our visit, Elena had an artificial 'nose' on her trach. When she exhales, it provides humidity. Her feeds have also been to gravity this weekend.

Friends of Elena      Friends of Elena



SUNDAY, DECEMBER 07, 2008 01:30 AM, CST
Thank you to everyone who gave up so much of their time in order to organize the benefit this evening, and to all of the hundreds of people who came out to support us and those who purchased raffle tickets. There were so many people that they ran out of parking spaces.

Thank you to all of the sponsors for the beautiful donations ranging from gift cards to electronics to airplane rides to a puppy.

I must say, it was slightly overwhelming tonight, but it was so nice to see everyone. We live in such a great community, and there are a ton of people who love our little baby girls, and our big girl (who never stopped running once the entire evening except to stop and eat cookies).

Thank you all so much. I think I read somewhere once that a public speech is never good unless the speaker does a snort/cry into the microphone...oops.

Thank you,
Lindsay and Juan Perez



Friends of Elena      Friends of Elena

Friends of Elena      Friends of Elena

Friends of Elena      Friends of Elena



WEDNESDAY, NOVEMBER 05, 2008 08:50 PM, CST
Elena needs a tracheostomy. Operating Room Trip #7 will take place on Friday. Her airway has not improved. About 25% of the trachea shows 80% narrowing. This means that a quarter of the length of her trachea only opens 20% of what it should. Because of the location of the tracheomalacia (where the cartilidge in her windpipe has not formed properly and her airway is floppy rather than rigid), Dr. Holinger will be able to insert the trach at that level, creating a secure airway. We discussed extubating her one more time, but the team and I decided that there is no point in setting her up for another emergency intubation, causing even more trauma to her airway, just to prolong the inevitable. The trach is a long-term, yet temporary, solution until her airway becomes stronger. This could take years. Everything is a bit more complicated because of the fact that Elena also has her spit fistula (the wide open esophagus that allows the spit to bubble out of her neck). He said that we will just figure out a way to make everything work.

He told me that the upper part of the trachea looks normal. I made him repeat that part again, explaining to him that we have never heard that before. He was not able to find any evidence of where the fistula (the bottom end of her esophagus) was connected into her airway before it was ligated. Elena's vocal cords showed normal movement. This is very good news because many times they can become paralyzed after extended periods of time on the vent.

Dr. Reynolds told me before that all kids with TEFs have tracheomalacia but the severity varies. She said that only a fraction of them ever end up needing a trach. That figures.

I met a little 8 month old beauty and her wonderful mother last night in the NICU. She has had a trach for a couple of months now. Her mom said that it was the best decision they ever made for her. As soon as she recovered from the surgery, her color and breathing had already improved tremendously. She became more social and was able to develop more appropriately. It's a huge leap towards being able to come home. My mind keeps wandering back to them every time I get upset about it. I guess it's safe to say that I find myself thinking about them at least once a minute.

While recovering from her bronchoscopy today, she had several episodes where she turned gray while she was sleeping. She also had one of her usual spells where she started to cry and quickly turned the color of an eggplant.

I hate eggplants.


SUNDAY, OCTOBER 26, 2008 08:40 PM, CDT
"There were no big changes made with Elena today other than decreasing the frequency of her breathing treatments. She was very sleepy. She had a big spell while I was on the phone, checking on her. Cassie, one of her other great primary RNs, had to abruptly hang up the phone. I waited as long as I could (not very long), then I called the secretary back to tell me what was going on. The doctor had just walked in the room, and he and Cassie already had everything under control by the time I called back. Those are my least favorite phone calls. I have had many like that.

We met with Dr. Reynolds this morning. The fact that she came in to meet with us on a Sunday morning still amazes me. Elena's last surgeon didn't even find time to talk with us until days later after he performed surgery on our one day old preemie baby, so this was a refreshing change of pace. She drew pictures of Elena's spit fistula and also to explain her upcoming surgery (at one year of age). We asked if she had ever seen babies like Elena before. She has seen babies with her anomolies, but separately, not all together in this combination. That's what we were told at LGH, too- that no one had even seen babies like her- not even in case studies. She said it is extremely rare to see anyone without a lung, like Elena, and also extremely rare to have a pyloric atresia (where her intestines just stopped instead of connecting to her stomach). She told us about other families whose children have been vented at home for a couple of years, then ended up being fine, and that she would love to get them in contact with us eventually. She thinks it would be good for us to see those children running around like normal little kids. Most importantly, she talked about how strong our little girl is. She told us that Elena has made it this far, against all odds...that her body will learn how to compensate for only having one lung. Elena is going to be able to drink milk once she overcomes these respiratory issues. She'll even be able to eat solid foods, they'll just come out of her neck. They will end up all over the place, but what baby doesn't make a mess?

Dr. Reynolds also talked to us about how all of this happened to Elena. She is an expert in congenital anomolies. She said that it occured in an instant, and that no one has ever been able to explain or re-create these types of anomolies in experiments on animals. There is no known cause- not x-rays, CT scans, diet, environmental factors- nothing. She said that it's a mother's job to blame herself, but to stop it.

One other thing that we discussed was the bronchoscopy. When Elena had her cervical esophagostomy, Dr. Reynolds had consulted with an ENT and told him to be ready in case she needed him to do the bronch during that operation. At that time it wasn't neccessary, though. She actually consulted with the #1 ENT in the state, if not the entire nation, before Elena even arrived at Children's. We were told that right now she is too unstable to even have a bronch. An elevator ride down to the OR would probably be the last place anyone would want to be with her at this point in time. So now we wait. It's going to be a big decision making day in rounds tomorrow.

Despite everything, we had a great weekend with her caregivers. Three of her four primary nurses had her almost all weekend- Cassie, Paige and Chris. They're all excellent and I find so much comfort when they are there with her."

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