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.