We Apologize for the Delay…

But our lack of time as well as a little laziness has contributed to our lack of posts. I’ll be honest: I’ve written this post about 4 times. The excuses aren’t important. What is important is that I’m finally putting the pen to the paper…or the finger to the key boards. I’m sitting in Layla’s room right now, I have her car seat in the doorway to prevent escape and a few toys on the floor to distract her. And I am here in the rocking chair, writing.

Many of you have asked about Layla. Let’s talk about her.

Layla is 16.5 lbs, about 26 inches long, and as wiggly as she has ever been. Medical-wise, she’s doing great. She’s almost like a normal baby. But BETTER. Well, she’s as normal as she can be with all of the complications that she has had. Layla’s lungs continue to grow, as all do at her age anyway. Her organs are functioning normally and her scar looks great. She continues to amaze us every day.

One complication Layla’s cardiologist found was with her heart. Well, her heart is fine, but she has what is called a pulmonary ductus arteriosis, or PDA for short (don’t you love all of these acronyms the doctors give us?) Basically, this artery is in the heart, which helps blood bypass the lungs, seeing as they aren’t used. When a baby is born, that artery closes up for normal function. Sometimes that artery doesn’t close up, like in Layla’s case. This can be a bad thing, but for Layla, since the artery is very small, it doesn’t make a difference. The cardiologist said that we’ll come back in a year and have it checked out, hoping that it will have closed by then. If it doesn’t, we’ll look at our options (surgery or not). Because the size of the artery is so small, they are thinking about not plugging it up, because of all of the complications surgery poses.

Layla is still on omeprazole/prilosec for her acid reflux, and we’re not sure how long she’ll be on it. If she doesn’t get the medicine early enough in the day, she vomits A LOT. But as for now, things are under control.

Layla is now: crawling, pulling herself up onto things (like the coffee table and chairs), and putting all things into her mouth. She likes to eat her hands, but not yet any food. We don’t think she’s ready yet, as she has thrown up: rice cereal, avocados, butternut squash, and applesauce. They say that if she pushes things out of her mouth when you first put it in (not when you stick it in her mouth and she vomits—that’s a completely different thing. Trust me.), then she’s probably not ready.

She also is: a momma’s girl, loves to listen to church songs in Spanish (I suppose she’d like them in English if I gave it a chance.), get tickled, and go on hikes. Lately, since the weather has been so good, we’ve gone on some family hikes together. She doesn’t like it when we stop, and arches her back and grunts for us to keep on moving.

The first couple of nights when we first came home were a nightmare. We couldn’t stop checking on her in her room. Basically, we didn’t get ANY sleep. Not only that, she was supposed to get her medicine every 6 hours and eat every 4. So we were up about every 2, and had to wake her up the first week.

Driving home was also a mess. How do they even send parents home with their babies after 2 or 3 days??? We didn’t even know what we were doing after 2 1/2 months! What normally would take us 3 hours to get home took us 5 hours. We had to make a pit stop about halfway into the trip because Layla needed her diaper changed (complete blowout) and got hungry. And then screamed forEVER. We thought about asking the hospital to let us back in. But we decided to finish the drive home.

We went to California in February to meet our family there for the first time (obviously she’s met my parents and littlest brother, but not aunts and uncles). She enjoyed herself thoroughly. And so did I. It was nice seeing so many people, and have them tell us they were thinking and praying for us. It just has meant so much to us, and continues to mean so much.

I guess that’s about it. I’m going to now post photos. Because that’s really what we all want to see anyway.  Click on the collage to make them bigger!

Disculpen la demora, pero la falta de tiempo como también un poco de pereza han contribuido a la falta entradas en el blog. Seré honesta: He escrito esta estrada como 4 veces ya. Las excusas no son importantes. Lo importante es que por fin estoy poniendo la pluma a la hoja, o más bien, el dedo al teclado. Estoy en el cuarto de Layla ahora, tengo su asiento de carro en la puerta para prevenir su escape y algunos juguetes en el suelo para distraerla. Estoy en la mecedora, escribiendo.

Muchos de ustedes me han preguntado sobre Layla. Hablemos de ella.

Layla pesa 165 libras, mide 26 pulgadas, y se menea como si fuera nada. En cuanto al médico, está muy bien. Es casi un bebé normal. Y MEJOR QUE NUNCA. Si, es tan normal como es posible con todas las complicaciones que ha tenido. Siguen creciendo los pulmones, como todos los hacen a su edad. Sus órganos funcionan normalmente y su cicatriz se mira muy bien. Ella sigue asombrándonos con cada día.

Una complicación que el cardiólogo encontró está en su corazón. Pues, su corazón está bien pero tiene lo que se llama conducto arterioso pulmonar. Básicamente esta arteria en el corazón ayuda la sangre a sobrepasar los pulmones. Cuando nace un bebé la arteria se cierra para su función normal. En el caso de Layla, la arteria no se ha cerrado. Puede ser una cosa peligrosa, pero con Layla la arteria es tan chiquita que no hace ninguna diferencia. Vamos a volver a chequearlo en un año esperando que ya se haya cerrado. Si no, una opción es otra operación, pero los médicos por ahora no están muy preocupados con la condición.

Layla sigue tomando su medicina, prilosec para su reflujo ácido, y no sabemos por cuánto tiempo la tiene que tomar. Si no la toma temprano en la mañana, vomita MUCHO. Hasta la fecha lo tenemos bajo el control.

Layla ya esta gateando, levantándose en cosas (como la mesa de café o los asientos), y poniendo toda clase de cosas en su boca. Le gusta comerse las manos pero no le gusta la comida real. No perece lista para eso dado que cada vez que la doy comida de repente vomita. Dicen que si se niega la comida cuando se la da, entonces no están listos.

También Layla es muy chiquitina de mamá. Le encanta escuchar los himnos en español, tiene cosquillas, y le gusta escalar montañas en busca de venado. Hace buen tiempo ahora (pues nevó anoche) y cada viernes damos una caminata en las montañas cerca de aquí. A ella no le gusta si paramos para buscar los venados. Ella quiere tirar pa’lante!

Las primeras noches cuando regresamos del hospital fueron una pesadilla. No podíamos dejar de chequearla en su cuarto. Básicamente no dormimos NADA. Si eso no fuera todo, tuvimos que darla su medicina  cada 6 horas, y tenía que comer cada 4 horas. Entonces no levantábamos cada 2 horas con ella esa primera semana.

El viaje a casa también fue en revolú. ¿Cómo es que mandan a los padres con bebé a casa en 2 o 3 días después del nacimiento? ¡Nosotros no sabíamos qué hacer después de 2 ½ meses! De Portland a nuestra casa suele tomar como 3 horas. Al volver a casa la primera vez nos tomó 5 horas. Tuvimos que parar a medio camino para cambiar su pañal y darla de comer. Después de comer ella comenzó a gritar con ganas. Sin parar. Pensamos en pedir al hospital a dejarnos volver, pero tomamos coraje y terminamos el viaje bien.

Fuimos a California en febrero a ver la familia por primera vez allá. Ella se gozaba mucho. También yo me gozaba. Fue muy bueno poder ver a tantas personas y escuchar que tantos habían orado por nosotros. Nos significa mucho. Y sigue siendo así.

Pues, creo que es todo. Voy a poner las fotos ahora, es obvio que eso es lo que todos queremos 🙂

Captain America: A must see (obviously I, Kelsey, came up with this post title, and Erica has no idea I did it)

Two years ago, when my parents and Ethan came to visit, we visited Portland. For dinner one night, we decided to have some Ethiopian food. Little did I know that I would be spending two months of my life mere blocks from that little hole-in-the-wall restaurant. I reflected on that visit the other day as I was passing the place, thinking about how care-free I was then. Not to sound cliche, but life was a lot less complicated. Much like everyone else, I couldn’t predict the future. If I had known I would have had this experience, would I have done it? If we all knew what kind of trials will come our way, would we choose yes?

As a member of the Church of Jesus Christ of Latter-day Saints, we believe that, before this life, we knew we would have trials. We chose to come down to this earth, gain bodies, and have trials, even though they would be hard. We knew that, if we worked hard at it, these experiences would help us to become better people, and eventually, become like our Savior, Jesus Christ. He would help us get through these experiences.

Now, saying that, of course I would have, two years ago, chosen to have this experience, because at the end of it, I would get my baby. We would go home. And what an incredible miracle that will be.

It may not sound like it from the blog posts, but I have changed so much. I have learned that patience, is, in fact, a virtue. And something that I’ve been meaning to learn. No, not really. I haven’t really been meaning to learn that. I have learned to take one day at a time, because when you look ahead and start worrying, you kind of ruin that day for yourself. I have learned to rely on Jesus Christ. What does that mean? Putting my trust in Him. Trusting that the doctors know what they’re doing. Trusting that everything really does happen for a reason. Sometimes, I don’t know what the reason is. For instance, why did my house have to flood (twice)? Why did we have black mold? Why is Kelsey’s truck needing repairs that cost like a billion and one dollars? Was there really a lesson in those trials? Because I have yet to understand them.

In the last 6 days, Layla has progressed by leaps and bounds. I mean, I am so amazed myself at how much she has grown. On Monday, she was put on bolus feeds, which is the opposite of continuous feeds. So every two hours, she got 76 mls of milk, with an hour off. Tuesday, she did 1.5 hours, with 1.5 off, and Wednesday 1 hour on and 2 off, and Thursday she did 30 minutes, which was the goal. That whole last sentence really doesn’t accurately describe her progress. Normally, CDH babies do no progress with that speed. She just tolerated so well the lessening of time, the doctors decided to go one step further each day. As most of you know (but I didn’t until being a mom), babies usually drink their milk in 30 minutes, so to have her reach that goal was INCREDIBLE. I really feel like I am not accurately describing her progress. Through some major miracles, she is doing so well. We were hoping to be home for Halloween, but I think we’ll be home sooner, which we’ll talk about in a little bit.

Friday was kind of an exciting day. And when I say “kind of” I really mean I nearly did 7 backflips. Layla got her bridle off! I don’t think I told you what a bridle is because I was a little bit annoyed at the doctors for putting one on her. A bridle is, in all sense of the word, a bridle. If you have or know about horses, you know what they are for. In horses, it is the thing that goes in their mouth that is attached to the rope. When you move the rope around, you guide the horse. If they are getting a bit naughty, you tug on that rope, which pulls the bridle back into their mouth, giving them a hurty sensation. On Layla, they stuck one piece of string up her nose and back down the other, and attaches it to her tube. They did it so that she wouldn’t pull the tube out, which she did. Like four times before. Anyway, it was exciting to get that stupid thing out. Especially because it was a major booger catcher.

Layla has also been really good about getting her feeds. She has been keeping everything down, except for on Thursday. Thursday was an exception because she nursed for the first time, got too much, and threw it all up. All of it. That was discouraging, but also ok. We knew why she threw up, and it wasn’t because she had a loose esophagus. Which, we found out that she doesn’t. At least she hasn’t shown the signs for it. Since feedings have been going so well, the doctor said, “Why don’t we just take the feeding tube out?” SHE REALLY SAID THAT. She really did. So, that’s just what happened.

So, that’s that. We may go home the end of this week or the beginning of next. YEAH. I  JUST SAID THAT. It really is going to happen. We are really going to get out of here. I’m kind of nervous because, well, we’re going to do this on our own. I know you may be saying to yourselves, “Well, duh, You knew you weren’t going to be there forever.” Yes, reader, I knew that. But here we are anyway. We aren’t sure exactly when we are going to go home, so I’m going to write this down now, and then remind you all when the time really comes.

Layla has compromised lungs. She is a baby. Two factors that can be harming for her, especially as we go home to the beginning of cold/flu season. WE REALLY DON’T WANT TO RETURN TO THE HOSPITAL. So don’t be a dummy when you want to come visit us. Here are the rules:

1. Wash yo hands. None of that put-some-soap-on-and-wash-the-soap-off business. Like, sing your abc’s while you do it.

2. Use hand sanitizer. Yes, I am going to ask you to wash your hands AND use hand sanitizer.

3. If you are sick, STAY HOME. We don’t want any of that junk. Even if you have a small cough, but you feel great. If you’ve been around someone who has been sick, you can just forget about seeing our cute princess.

4. Don’t be a liar. If you haven’t been following the rules, you will get in BIG TROUBLE, MISTER. Maybe we won’t know, but the Man Upstairs does. He’s watching you.

That’s it.

Thanks again for all the support. We’re finishing up this experience, whether it be this week or the next. We can’t wait to go home and live the “real life”.

Clockwise from top: Layla likes looking at herself in the mirror; Layla smiling, courtesy of the Yoshioka Family; Layla and the Yoshioka family (Thank you guys for visiting! We love you!); Layla and one of her neonatalogists, Dr. Nelson. We love her.

Hace dos años, cuando mis padres y hermanito nos visitaron, fuimos a Portland. Una noche, fuimos a comer en un restaurante Etíope. En este momento, no sabía que, en dos años, estaríamos unos bloques del restaurante, viviendo por dos meses, con nuestro bebé, en el hospital. Reflexioné en las situaciones que hemos tenido cuando pasé el restaurante. Si yo supiera lo que pasaría en dos años más, lo viviría? Si todos nosotros supiéramos lo que pasaría en nuestras vidas, el bien y el mal, lo viviríamos?

Como miembro de la Iglesia de Jesucristo de los Santos de los Últimos Días, creo que, antes de esta vida,  sabíamos que tendríamos desafíos. Escogimos venir al mundo, obtener cuerpos, tener desafíos, aunque serían difíciles. Sabíamos que, si hicieran nuestra parte esas experiencias nos ayudarían a ser más como Jesucristo.  Él nos ayudaría.

Habiendo dicho eso, por supuesto yo habría escogido este desafío, porque, al fin, mi familia y yo podríamos volver a casa.

He cambiado mucho. Por esta experiencia, he obtenido más paciencia. Aprendí cómo vivir, aunque mis planes no sean los planes de Layla y El Señor, todo saldrá bien.

Estos últimos 6 días, Layla ha progresado MUCHÍSIMO. El lunes (29 de septiembre), Layla empezó a comer en un espacio de 2 horas, en vez de comer todo el día, por el tubo.  Porque ella no vomitó, el martes, comenzaron a darle comida entre una hora y media, y el miércoles entre una hora, y el jueves entre 30 minutos. Cada día, teníamos miedo que ella fuera a vomitar, y cada día ella nos demostró su esfuerza. Que milagro ha sido esta semana! Normalmente, los bebés con hernias así no progresan tan rápidamente como Layla, pero sabemos que es por las oraciones y fe que ella ha sido tan fuerte.

El viernes fue muy emocionante. Se le quitaron la brida a Layla! Ne he hablado mucho de la brida, pues estaba irritada con los médicos por habérsela puesto. Una brida es para caballos, para poder dirigirlos a su placer. Le pusieron una brida a Layla para evitar que intentara sacar el tubo de alimentación. Layla siempre intenta sacar el tubo de su cara, ya sabe que eso no es natural. Por fin se la sacaron. Más que nada es una trampa de mocos.

También ella está comiendo muy bien. No está vomitando para nada, excepto el  jueves. El jueves fue la primera vez que se ha amamantado. Comió demasiado y lo vomitó por completo. Fue difícil que así lo sucediera, pero sabemos que no fue por tener un esófago flojo, lo cual ahora bien sabemos que no tiene. Ya que ha estado comiendo tan bien la doctora dijo, “Por qué no quitamos el tubo también?” Y así fue. Quitaron el tubo de alimentación el domingo y fue la primera vez desde su nacimiento que no ha tenido algo en su cara. Qué bendición!

Entonces, así es. Tal vez podamos volver a cada esta semana misma. Ella está progresando rápidamente. Me pongo nerviosa al pensar en eso, porque hasta ahora hemos sido “medio padres”, y ya pronto vamos a ser padres auténticos y hacerlo sin ayuda. No sabemos exactamente cuándo podemos volver a casa, pero llega el momento, y cuando ese momento venga, van a saberlo.

 

We Are Still Here, in Case Anyone Forgot

It has been almost 9 weeks since I’ve been home. But that’s beside the point.

Actually, no, it isn’t. THAT IS A LONG TIME (I say it in my loud voice).

Yesterday, Layla was started on feeds that went over two hours yesterday. Before that, she was on continuous feeds, or rather, just a continual flow of milk non-stop, all day long. So with the feeds yesterday, she had two hours on and one hour off. Since she did well with that yesterday and didn’t vomit or have any troubles, today they put her on one and a half hour feeds, with one and a half hours off. Hence, she had a hard day today. Lots of gas in her stomach and she isn’t used to having food in her stomach, so things are a little uncomfortable. Basically, she has been crying all day. Which is draining. For her and myself.

 

This week is the trial week for Layla and having food in her stomach. But I guess I haven’t written why she has the tube in her stomach, because before, the tube went down to her intestines. Sunday morning, Layla got her finger between the bridle and yanked the tube right nearly out. Before, the tubes were coiled into her intestines, so she pulled out the coil and a little more so that it was at the end of her stomach, pointing to her intestines. Again and again, she demonstrates to us when she is ready and gets the show on the road. They had to do an x-ray on her to see where the tube was, and determined that it was in the right spot, and weren’t going to move it, which was going to happen on Monday anyway (they were going to pull up the tube on Monday and start feedings there). She is one sassy girl!

With that being said, this week is the trial week for her, to see if her esophagus has tightened. If it hasn’t, we’ll know by the reflux(vomiting) she has, and then she’ll have to have surgery, which has been scheduled for Friday. Or rather, she has a slot for Friday tentatively.

Does she look like Kelsey or Erica? I say Kelsey.

Sunday, we got a special order from the doctors to take a small field trip. Here at the hospital, they have BEAUTIFUL gardens. We were able to, with our nurse, go to the gardens with Layla. She LOVED it. And by love, I really mean that she fell asleep right when we got there. Oh well. At least we got some pictures.

 

Clockwise, from the top: Layla getting ready to go; Kelsey, Jan and Halle, our nurses, with Layla in the garden; Jan and Kelsey, walking Layla; Kels, Layla and I; Kels and Layla

Today, she also started on some bottle feeding. She was only given an ounce because she hasn’t had anything in her stomach, and that much milk very quick can give her a stomachache, causing her to throw it all up. We didn’t want to overwhelm her, so we just gave her a little. She did well, drank 23 out of 30 ml, which was good. So far, no vomit.

Above: Layla and I doing Personal Progress 

 

 

Ya hace casi 9 semanas que estamos aquí, pero ni importa.

De hecho, ¡Sí, importa! ¡Es mucho tiempo!

El lunes Layla empezó con alimentación sobre una dureza de más de dos horas. Antes de eso tenía alimentación continua, un corriente de leche tras el tubo sin cesar. Con esta nueva dirección de alimentación se le alimenta por dos horas, y una hora de espera. Lo toleró bien, nunca vomitó ni tuvo ningún problema. Ya que le iba bien el lunes, ayer (martes) se le alimentaba por una hora y media, con una hora y media de espera. Con esta progresión le empezó a ser más difícil. Hay mucho gas en su estómago y no está acostumbrada a tener comida en su estómago. Básicamente pasó el día entero llorando, lo cual causa mucho fatiga.

A ella y a mí también.

Esta semana es la semana de prueba de Layla y su estómago. Me di cuenta de que no he explicado por qué el tubo ya está en el estómago, porque antes estaba directamente en los intestinos. El domingo por la mañana Layla de alguna manera desconocida logró agarrar el tubo en su nariz con el dedito y jalarlo hasta casi quitarlo por completo. El punto de la brida nasal es evitar que algo así ocurra. Layla nos demuestra cada día que ella misma tiene el control. Ella no más esta lista para salir y quiere adelantar el proceso. Hicieron un rayos X para ver dónde el tubo terminó y resultó que Layla colocó el tubo en el punto exacto que los médicos lo iban a poner el lunes. ¡Layla no quiso esperar ni un día más!

Habiendo dicho que es la semana de prueba, si necesita otra operación será este viernes. Vamos a ver cómo tolera la nueva alimentación y si su esófago está bien. El domingo recibimos un regalito del jefe de médico de esta unidad: pudimos tomar a Layla afuera al jardín. Fuimos con nuestra enfermera y a Layla le encantó, es decir, inmediatamente después de ver la luz del sol y oler las bellas floras se puso bien dormida. El tipo de dormir del que no se puede despertar jaja. Ni modo, sacamos muchas photos de nuestro angelito.

Ayer, empezó la alimentación con botella. Se le dio una onza solamente, porque hasta ahora no ha tenido leche en el estómago y una cantidad tan abrupta le puede causar mucho dolor del estómago. Ella tomó 23ml de 30ml, lo cual es fantástico. Hasta el momento no ha vomitado. Si ella sigue bien así, no tendrá la operación. ¡Es la esperanza!

 

 

 

 

 

Kelsey and the Flood, Ark, and new Carpet

Written yesterday, I just didn’t post it/Escrito ayer

 

Para los que hablan español, está escrito en español al pie, como siempre

Today has already been quite eventful. And this time, it wasn’t even Layla’s doing.

Let’s first talk about faith.

 Alma 32: 21 And now as I said concerning faith—faith is not to have a perfect knowledge of things; therefore if ye have faith ye hope for things which are not seen, which are true.

We learn that faith is to believe things that we don’t see. Do you know what’s hard and discouraging? Not knowing when the heck we’re going to get out of here. I think back on the last seven (yes, SEVEN) weeks that we’ve been here, and knowing that we have to be here for at least six more, it kind of gets discouraging. I really have to exercise my faith, and really hope and pray that we’ll eventually get out of here. Layla is doing so good that we have to remember that she still has to strengthen her lungs and get over the acid reflux and also get her esophagus tightened, whether it be naturally or surgically.

As I was pondering all of that this morning, I got a call from Kelsey. Kelsey went home this morning to take some things home and bring some things back. Namely, our stroller (Layla has been given the ok to stroll around the NICU. Woop woop!), new clothes for me (wearing the same 6 shirts every week gets BORING. I know, first world problems), and some books for Layla (this girl is getting BORED). Kelsey had called to tell me some disheartening news. Before I go on, let me say, I AM NOT MAKING THIS UP. I seriously couldn’t write a dumb reality show any better. I wouldn’t want to watch a reality show that is living the life I am. I feel like I am making this stuff up, it is so unreal. Anyway, he calls me, and says that our toilet had flooded. All over the bathroom. I asked him if it smelled in the house, and he said, “No, not upstairs.” NOT UPSTAIRS??? That means that he hasn’t been downstairs. And that means that we might have a problem downstairs. I mean, what kind of answer is that, “not downstairs”. Not downstairs yourself. So he goes downstairs and the whole basement is flooded. FLOODED. Are you people getting this? I still can’t believe it. So it is flooded. Our basement is partly finished, so there are only two rooms that are fully carpeted. One of those rooms is flooded, but the other one, thank goodness, isn’t. I guess a screw got loose in the upstairs bathroom and flooded our downstairs.

I guess a blessing is that we aren’t there…? I’ll be honest, I’m not even trying to look at the blessings of being here. But, thank goodness we have an electrician (Kelsey), a carpenter (Gary, Kelsey’s dad), and a plummer (Ken, Gary’s dad) to help us out. So right now they are assessing the situation, and probably tearing out the carpet (because it now needs to be replaced).

Oh, and renters insurance won’t cover it. Yay for insurance.

On a happier note, Layla is doing fantastic. I mean, we love her so much. Today, she has been sleeping all day, so she’s probably going to party all night long. She had her pulse oximeter taken off, which was monitoring her oxygen saturation. So one more monitor off! She still has her PICC line, three monitors on her chest (for heart rate and respiratory rate), and her feeding tube. Feedings are up to 15 ml an hour, and the IV’s are down as well. She is just chugging along. And we couldn’t be happier.

Layla is growing and becoming more alert, which means she is getting bored. Like I said earlier, she is going to be able to walk around the unit. We’re also getting some books from home so she can look at things other than the white walls and boring parents. I was told to try and remember nursery rhymes and songs I was sung to teach her and get her active. Kind of exciting. Makes me feel like a real mom!

The one thing that made me really feel like a mom happened yesterday. Layla has those tubes in her nose, which catch boogers. They’ve been stuffing up her nose and bothering me, so I did what any mother would do, and I took care of them. Now, having said that, it kind of grosses me out.

Anyway, may the rest of the week be as uneventful as watching a slug cross the sidewalk.

 

 

Hoy ya ha sido interesante. Déjame hablar primero de la fe. En el Libro de Mormón, Alma 32:21, dice:    Y ahora bien, como decía concerniente a la fe: La fe no es tener un conocimiento perfecto de las cosas; de modo que si tenéis fe, tenéis esperanza en cosas que no se ven, y que son verdaderas.

Aprendemos que la fe es el creer en lo que no podemos ver. ¿Sabes qué es desalentado?  No tener el saber cuándo saldremos del hospital y por fin llegar a casa. Pienso en las últimas siete semanas y en que necesitamos quedarnos aquí otras 6 semanas, o posiblemente más y quiero llorar. Es una prueba de la fe, y tengo que aprender más de la fe, y de mi fe, y seguir adelante. Sé que es parte de la vida.

Al meditar sobre la situación, me llamó Kelsey por teléfono. Él salió hoy para recoger unas cosas en nuestra casa. Me llamó cuando llegó diciendo que se había inundado nuestra casa. El baño se inundó, junto con el sótano y un cuarto en el sótano. Entonces, Kelsey tiene que sacar la alfombra del cuarto y secar todo.

Una bendición es que Kelsey es electricista, su papá es carpintero, y su abuelo es plomero. Somos bien afortunados.

Layla está feliz. De hecho, ha estado descansada por todo el tiempo hoy. Está contenta con todo. Está creciendo mucho y se aburre también. Los doctores nos dicen que podemos andar en cochecito con ella y sus monitores. También, necesitamos leer mucho en libros con fotografías y arte para ayudarla aprender. Básicamente, les gusta que nosotros vivamos una vida que sea más o menos normal y con un horario.

 

 

The Point of Routine

Para los que hablan español, está escrito en español al pie, como siempre

This week, we’ve started getting into what feels like routine. Not a routine, per se, but routine business. Layla is more stable and until we find out what’s going on with her esophagus/lung development/reflux.

 

Wednesday, we sat her up for the first time, and since then, she doesn’t want to lay down! I think that is attributed to her acid reflux, and laying down hurts her more, whereas, with gravity, sitting up makes life more comfortable. We also started occupational physical therapy, which is basically massages and stretches. She likes that so much so that she falls asleep when we do that. Too bad they don’t have it set up where parents get it done too. Oh well.

We also got moved into a new room. Yay! This one was by choice, since we didn’t want to be in a windowless room any longer. Picky, picky. But this one will be more conducive for natural light pictures.

This week, we have more pictures than words. So, here you go.

Esta semana ha sido una semana tranquila. No tenemos mucho que decir porque los doctores quieren que ella descanse y se prepare para cirugía, si es que la necesita (y esperamos que no la necesite).

El miércoles ella empezó terapia física, la cual incluye estirarse y masajearse. A ella le gusta tanto que le hace dormir. Es una pena que no se lo ofrezca a los padres. ¡A mí me gustaría tener un masaje!

Nos mudamos a una nueva habitación—no era necesario, pero queríamos un cuarto con una ventana. Y es mejor para sacar fotos.

Creo que esto es todo. Layla no ha vomitado, está feliz de comer (sus intestinos), y estamos todos contentos. Será así hasta que sepamos si necesita cirugía o lo que vaya a pasar.

 

  

  

 

 

 

Saturday is a Special Day

 

 

 

 

 

 

 

 

 

 

Para los que hablan español, está escrito en español al pie

I’ll be honest, it gets a little tiresome writing so much. I used to be really good at writing in a journal, but now it isn’t so easy. I keep up because I want you guys to be informed, and also I don’t want to regret later on not writing everything down. So, here is another blog post.

Before we get ahead of ourselves, I cut my hair. Well, I had my hair cut. And it was actually only my bangs.

Anyway, I started writing this on Thursday:

As far as updates go, Layla is doing much better but also the same. Whenever there isn’t anything major happening, it is stable for me. 

1. Yesterday, Layla had upper GI imaging done, which was with contrast. So, she had to have fluid run through her stomach to see how far it would go down, where it was stopping, and where the problem was. It was a three hour study that was somewhat inconclusive, but at the same time, informative. They found out that she was severely refluxing and that her esophagus is very loose. 

Back to today:

Let’s do bullet points. They seem to be easier.

2. Because she had such a large defect from the hernia, her esophagus was stretched (from being pushed by the organs) and now it is loose. That means that she will have acid reflux, but they didn’t think it would be this bad. At this point, what needs to happen are a few things:

a. Tighten up her esophagus. That could be done naturally, meaning that her esophagus will, through time, naturally tighten. We’re hoping that will happen, for obvious reasons. If that doesn’t occur, they will have to surgically tighten it. We don’t want that to happen because she will have to go to surgery again, which the surgeons will want to wait weeks to do. Inside the body, when you tamper with the stomach/esophagus/intestines, it causes those organs to inflame. When they inflame, they create scar tissue. Scar tissue creates problems down the road, so we’re hoping for a miracle. We’ve asked for so many thus far, but we still believe that they occur even today. I mean, we’ve see so many thus far. It can happen again.

b. Layla’s lungs need to grow. Specifically her left lung, where the defect was. She is still using her right lung for breathing because the left lung is significantly smaller.

c. Layla needs to be on her own feeding—meaning, no tube feedings. This afternoon she started feedings through her tube, which has been placed in her nose, through her stomach and ending in her intestines. So far (it has been about 6 hours) she hasn’t refluxed. We’re pretty grateful.

Speaking of the feeding tubes, they finally were able to place her feeding tube yesterday. Wednesday, they did the upper GI imaging done to see the intestines, followed by an x-ray in the afternoon. Thursday, she had a fluoroscopic x-ray, so that they could place the feeding tube past her stomach into her intestines, so that she wouldn’t reflux. Unfortunately, they were unable to place it, again, so they came back to the room and decided to have another specialist come in to place it. Friday, they took her again down to the radiology department, and this time they put her under anesthesia and endoscopically (using a camera through her mouth and down her stomach/intestines) placed the feeding tube. Two and a half hours later they were able to secure it, and she went right back up to her room.

Layla was taken off her nasal cannula, so she is officially breathing on her own. And today is her one-month birthday. It is kind of heartbreaking that she has spent the first month of her life in the NICU. But, we continue forward. Hopefully she won’t have to be here longer than another month.

We’re having a family fast (don’t know what that is? Go here) for Layla that her esophagus will tighten so that she won’t have to go to surgery, as well as that she might heal so we can go home. Our ward back home is fasting as well, and we’re so appreciative. This is just a really hard experience, but as my aunt said, “These are trying times made easier with love.”

 

A veces, me canso de escribir lo que está sucediendo. Pero, a la misma vez, sé que me arrepentiré si no escribo las experiencias que tenemos. Con las fechas, escribo lo que ha pasado:

Miércoles a viernes: Layla tuvo un rayos-x para ver cómo está su estómago/esófago/intestino. No era un estudio golondrino, tal como suponíamos, sino un estudio del tracto gastrointestinal superior. Vieron su defecto y cómo situar el tubo de alimentación. También, obtuvieron un rayos-x para ver si pudieron situaron el tubo correctamente. Supieron que su esófago está suelto/desconectado, lo cual le hace vomitar sin cesar. Han intentado 4 veces situar el tubo de alimentación, y viernes por la noche por fin lograron poner el tubo.

Para salir del hospital, Layla necesita hacer unas cosas importantes:

1. Su esófago necesita apretarse. Puede apretarse naturalmente, con el tiempo. Si eso no pasa, necesitará cirugía para apretárselo. No queremos que ella necesite cirugía porque los cirujanos quieren esperar 3 a 5 semanas para hacerlo. Dentro del cuerpo, cuando manipulan los órganos, causa irritación/inflamación. La irritación/inflamación causa tejido epitelial, y el tejido epitelial causa problemas in la futura. Entonces, oramos y esperamos por un milagro. Hemos pedido por muchos, y creemos que hay milagros hoy en día, y podemos verlos.
2. Los pulmones de Layla, específicamente su pulmón izquierdo necesita crecer. Cuando nació, estaba chiquito, y todavía su pulmón derecho está trabajando más fuerte que el izquierdo.
3. Ella necesita comer sin ayuda. Ahora, tiene su tubo de alimentación, y lo tendrá por mucho tiempo, hasta que coma sin problemas. Tomará tiempo porque ahora está recibiendo 2 ml por hora, y eso no cubre lo que necesita para sobrevivir.

Ahora esta respirando por sí misma, y no usa el respirador. Fue un día con mucha felicidad por eso.

Mañana (domingo) tendremos un ayuno (una explicación del ayuno aquí) para que Layla recupere y que su esófago se apriete para que no necesite una operación. Sabemos y creemos en el poder del ayuno, y con mucha fe y oración, veremos bendiciones y milagros.

 

Progression/Progreso

Para los que hablan español, está escrito en español al pie

Whoops. For a couple of days there, I forgot I had a blog.

Just kidding, I’ve been hanging out with my baby.

Here are the updates:

1. Layla is doing MUCH better. They think that Layla has re-herniated near her esophagus, which would be called an esophageal herniation. That would be, then, in the spot where her esophagus and diaphragm meet. Like so (but not any of these):

      

They think that her intestines have been going through the hernia, possibly making her throw up.

2. So, as for progression, she will need to have another x-ray. It is a special x-ray that a specialist has to come in a do it, called a swallow study. So that might happen tomorrow or the next day. It’ll help show where exactly the hernia is and what needs to happen from here on out.

3. Yesterday, she got her c-pap off and is on the high-flow nasal cannula again! YAY! She looks much cuter with that on rather than her plastic surgery mask. I guess you could say she recovered from her plastic surgery and moved on to better things!

4. Today, Layla had a hard day. Well, not a hard day. Rather, she was cranky. They think that she is just hungry for milk. Right now, she is back on IV’s, so that isn’t really filling up her stomach like milk would, which is making her irritable. I don’t blame her. Hopefully we can start feedings soon. They might put a tube down her throat, which would prevent her from throwing up. Don’t ask me how or when, that’s just a possibility. And I really don’t know how that would work out.

5. Thank you, visitors this weekend: our sweet family—Kelsey’s parents and Grandpa. We love you guys SO SO SO MUCH! We want a visit from the Aunties soon, as well! And Sherri and Kalli, you guys are the best. It means so much to us to have friends like you. I hope we can make it up to you!

Well, I guess that’s it. Onward and upward, right?

Scroll down for more photos!

Y para mi gente que habla español:

Decidí escribir en español para ustedes porque 1) Necesito practicar mi español, y 2) Sería mejor para ustedes leerlo en español en vez de traducirlo al inglés, y sabemos que a veces no hace sentido cuando se traduce J

Tenemos mucho que decir, porque hace mucho tiempo que escribo. Desde el sábado, mucho ha pasado. Los doctores y cirujanos piensan que ella tiene una nueva hernia cerca de su esófago (vean el diagrama arriba). Y es por eso que piensan que ella ha vomitado mucho la semana pasada. Pero no sabemos por seguro. Ahora, está feliz, y se está mejorando. Pusieron una maquina se llama C-PAP el sábado para ayudarla respirar. Ha ayudado mucho, pero parece que Layla ha tenido cirugía plástica… ¡qué lástima! Ahora tiene una maquina que se llama “high flow nasal cannula” lo que está menos invasiva. Le ha cambiado el respirador porque está recuperando bien y sus pulmones están creciendo.

Para saber más, los doctores y cirujanos quieren obtener un nuevo rayos X, que se llama “estudio golondrina”. Pondrán un tubo en su boca para ver lo que está pasando en su esófago/estómago y ver qué área es el problema. Lo harán mañana o pasado mañana, porque necesitan un especialista para hacerlo. Entonces, seguimos esperando como siempre. Pero está bien. Ella está cómoda y feliz. Dicen que si necesita cirugía, será entre 3 a 5 semanas, y la vida estará como ahora—-cómoda para ella.

Creo que esto es todo. Seguimos como siempre: con fe en El Señor. Les damos muchas gracias por el apoyo, amor, y oraciones. Lo necesitamos mucho. ¡Besitos!

 

 

What Seems Like 6,000 Steps Back

Well, the last 36 hours have been terrible. I am not even going to sugar coat it. The last two days, Layla has been sounding like she has a cold—she coughs up a lot of mucus, which is a side effect of the acid reflux. The acid reflux causes a lot of mucus build up, and because she has been throwing up a lot, she has an aversion to swallowing, which causes her to choke on her mucus. Yesterday, after I had posted about the previous day, Layla was having trouble coughing up the mucus, which led her to aspirate/suffocate. As I was holding her, she started turning blue and couldn’t breathe. Luckily her alarms were going off, so the nurses came in and suctioned her out and she started breathing. It all happened so fast that I didn’t have time to panic. Or maybe I’m just not the panicky type. So that was a hard event.

That night, she had another episode (no so much of the blue part), so they had to bring in the nurse practitioner in to assess her, who said that they’d watch her over night and would call us for anything. I said a quick prayer after that, not because I didn’t want to be woken up from a blissful sleep, but because I didn’t want to be woken up from a blissful sleep because my baby wasn’t doing well.

At about 4:45 this morning, my phone started buzzing. I thought it was my alarm for me to pump (I know, TMI [too much information]…). I realized that it was someone calling me. I answered the phone because the area code was Portland, and no one other than the hospital would be calling me that early in the morning. I quickly answered the phone, and it was the nurse practitioner. She had called to say that Layla had a fever and had been throwing up a lot since I had left that night. They also said that she had an x-ray and could possibly have re-herniated, have pneumonia, or fluid in her lungs from throwing up. Neat. She was put on a c-pap machine that makes her look like she is mummified or that she just had plastic surgery. We’re trying to look at the bright side of things. Oh, and she’s back in her little girl bed.

Since then, we have talked to the surgeons again, the doctor, tons of nurses, and everyone else that we could possibly ever talk ever. We’re waiting to have an ultrasound to see what’s going on. I’ll post more later.

Kelsey and Layla sleeping:

 This is later.

She has re-herniated a little. So the surgeons and doctors and radiologist are going to chat tomorrow morning, look at the ultrasound, and see if they need to operate now or later. Because of it being a small herniation, they are concerned that it might block blood flow.

Can I rant a little? Actually, I’m going to. This is my blog and I get to do what I want. This is really hard. Anyone who gets to take their baby home right away really sucks right now. Which I guess is basically everyone because NICU experiences are far and few in between. Anyone who ever complains about not getting any sleep because their newborn is keeping them up, I will have no problem calling you out because at least YOU get to have YOUR baby home. At least YOU don’t have to spend who knows how long in an unfamiliar place, without your baby, not sure if your baby is actually going to make it out alive. THAT REALLY SUCKS.

Anyway, that’s it. I’m going to go get myself an extra large ice cream cone and eat it until my tummy hurts, and then eat the rest of it too.

So Much to Say

It really feels like there is so much to say. Even though we’ve been here for 4 weeks, it seems like it has been 4 months. I barely remember what my home looks like. Ok, it isn’t that bad, but you get what I mean.

Changes:

Wednesday, Layla’s steri-strips (the little pieces of tape covering her incision) were taken off, she also had her PICC line (the IV line) taken off, and her air flow was changed from 2 liters to 1.5 liters. BIG changes for a small girl! She also was moved to a “big girl crib”, which is exciting.

Thursday: we found out that she has a heart murmur. Boo. That was a good blow to our happy dance. Pretty scary, but the doctors said that they aren’t too concerned about it. I think it is called an “innocent heart murmur” where there aren’t any signs or symptoms to it, just a little change in the beat of the heart. But still a little scary. I think we deserve some ice cream and a cookie and a gold star for all of these crazy happenings.

Also sad news: My mom left. That was hard. It was like going on a mission all over again, that’s how hard it was. I know my mom is going to LOVE this, but I’m going to post pictures of her. We miss you, Mom!

 

 

 

 

“Erpy”

I don’t know if that’s even how you spell it, but they say that some babies are “erpy”, meaning they barf a lot. We had to change Layla’s bedding at least 4 times today. She had a hard day today. What’s happening is that she gets her food through the feeding tube, then about halfway through, she barfs it up. It is really gross. I’m trying to be a big girl and not have the “chain reaction” to watching her barf. I really am. And it is so sad to have her back a few steps. The doctor that was on for today said that we’d try feedings through a bottle and then slowly move towards having all of her feedings that way. He also said we’d be here for about a month longer, if all goes well. Really, this is the last hurtle we have to jump, being as the oxygen on her cannula is really low, almost low enough to have her taken off of that. So just to have her learn how to eat and hold things down and swallow her spit. Go Layla.

Other than that, today has been great! We also had some more visitors and we really appreciate you guys! Thanks for coming and seeing us. It really has brightened our day. And Shelli and Dennis, we forgot to take pictures of you guys, so I guess you’re just going to have to come back and see us! Sarah, since you’re probably already on the East Coast, you’ll have to send a picture!

Kelsey held Layla today. You guys probably think that I barely let the man hold our baby. Wrong. He could if he wanted to, all he has to do is ask. Honestly. Anyway, we’re teaching him how to hold babies, since before Layla, he wouldn’t hold his niece/nephews until they were at least a year old. He sure loves his girl, though.

 

A few other things:

1. I got a note from a friend back home with this little card:

 

And it just made me cry because this is really hard. I mean, really hard. And we have this small, sweet blessing right before our eyes, and even more blessings (not in the form of children, at least NOT YET.) that we have yet to see. We go through these experiences, sometimes barely making it and at the end, we receive blessings. And maybe sometimes those blessings are the mere fact that we made it. And sometimes not. And certainly not in this case.

2. My aunt posted this to my facebook, “These are trying times made easier with love.” How true that is. Again, I can’t thank you guys enough for the love and support. Keep it coming! I hope you guys get tired of me thanking you so much. I’m going to keep saying it. Forever.

We received a letter from our friends back home, and it sure made me tear up. I honestly am not that emotional, or at least that OVERLY emotional, but you guys just keep showing us so much kindness. To the Gaileys: We love you. We really do. Thank you so much for the letter and gift—we certainly were thinking of trying seaweed and crushed aspirin, but we decided ice cream would be a little on the tastier side.

3. And for good measure, a picture of Layla, who loves to have her right arm in the air/up in space:

And that’s why.