Friday, July 30, 2010

We will have our belly button!

Yesterday we had a tour of the NICU, we met with the neonatologist in charge and then we had a consultation with the pediatric surgeon. As we were expecting, there is not a set plan for after the birth and in terms of the surgery. It all depends on how big the O is when Tobias is finally born. However, it seems that only a minority of Os can not be repaired immediately after birth. The surgeon told us that in his experience, about 80% of Os are actually repaired within the first 24h. If the O is large or if the abdominal cavity is not big enough, then they will do "stages", which means they will repair the O little by little and day by day, but usually it will be all done within the first week of life. Finally, for the minority of Os that are giant or very big, the repair is done in a more conservative way using a method called "paint and wait". This treatment literally consists in paint the O with a solution that makes the membrane gets hard and then wait until the baby grows and there is enough space in the abdominal cavity to do the final and complete repair.
A good news is that Tobias will, most likely, get a belly button!. It is amazing what modern medicine can do. Yesterday was a hard awakening to reality. It is hard to accept that our little baby will have such a hard starting in this world. At the same time we are also very thankful of all the good news that we have received so far. All your prayers and positive thoughts are paying off!

Another good news is that Nico is finally coming home tomorrow!. And he is bringing my mom with him. So we will be enjoying her company (and help;)) for an entire week!.

Tendremos un ombligo!

Ayer tuvimos la oportunidad de recorrer la sala de cuidados intensivos de neonatos (NICU), hablamos con el neonatologo encargado y despues tuvimos consulta con el cirujano pediatra. Como esperabamos, todavia no sabemos a ciencia cierta cual va a ser el plan despues del nacimiento y en terminos de la cirujia, todo depende de que tan grande es el onfalocele cuando Tobias nazca. Pero al parecer, solo una minoria de Os no pueden ser reparados inmediatamente. El cirujano dijo que el 80% de Os son reparados completamente en las primeras 24h de vida. Si el O es de tamano mediano o si la cavidad abdominal no es lo suficientemente grande, entonces hacen un procedimiento por partes y van reparando el enfalocele cada dia un poco mas, pero por lo general toma un poco menos de una semana. Finalmente una minoria de Os, los que son muy grande no pueden ser reparados y necesitan un tratamiento mas conservador que se llama "pintar y esperar". Este consiste en literalmente pintar el O con una solucion que hace que la membrana se endurezca y despues esperar a que el bebe crezca y haya suficiente espacio para la reparacion final.
Una buena noticia es que a pesar de todo parece ser que Tobias si va a tener ombligo!. Es increible lo que la medicina moderna puede hacer y aunque ayer fue volver a la dura realidad de que nuestro bebe va a tener un comienzo duro en este mundo, lo cierto es que debemos estar agradecidos de todas las buenas noticias que hemos recibido hasta el momento. Todas la oraciones y pensamientos positivos que nos han enviado estan funcionando!

Otra buena noticia es que Nico llega manana de Colombia!!!. Y ademas tambien podremos disfrutar de mi mami al menos por una semanita. YUPI!!!

Tuesday, July 27, 2010

A little belly shot/una fotico de la barriga


27 weeks and 2 days. The belly doesn't seem that big in the picture, but believe me, it is huge. Hopefully next picture will include Nico. 4 more days to have our little guy with us again.
27 semanas y 2 dias. La barriga no se ve tan grande en la foto, pero la verdad es que es gigante. Ojala que en la proxima foto ya este Nico. Solo faltan 4 diitas para tener con nosotros otra vez a nuestro rey morito.

A happy heart..

...is a healthy one!. Today we had a fetal echocardiogram followed by a consultation with the specialist in pediatric cardiology.
But, let me start from the beginning. Since the day Tobias was diagnosed with an O and I started my own online research, I found a group of moms that have had or are going to have O babies. Just let me tell you, this group is great!. I had never known such strong and amazing women, such as these O mommies. And the same for their little ones. They are equally strong and don't give up until they are reunited with their families at home. Talking to these moms, I became more educated in O babies and procedures. Thanks to them, I realized that a fetal echocardiogram is considered a routine test for babies with omphalocele. So, I decided it was a good time to ask for one, and when we suggested it to our perinatologist, he also thought it would be a good idea.
The echocardiogram is basically a detailed ultrasound of the baby's heart to study all the structures and function of this organ. Tobias didn't want to collaborate much. From the time we got into the office he started to have the hiccups and they lasted for a good time after the ultrasound was started. Then, he decided that it was a good idea to move and flip around all the time, so that every time the technician had a good shot at the heart, he would move in the opposite direction. Of course, all the measurements and analyses took twice as much time as they were suppose to take. He was so active that at some point the technician had to ask me to roll on to one my sides, hoping that Tobias will settle down and stop moving so that she could finish with the test.
My mom thinks that he was moving so much because he could sense my own anxiety. Maybe she is right. But what I think is that Tobias is going to like to be the center of attention and even inside my belly he wants everybody to know he is here. There is no question he is being very successful at it!. Can you imagine?. He will be the first person in the family that is not going to have a belly button!. Nobody can compete with that.
Ok, going back to the heart subject, when the echo finally finished, we met with the doctor and she confirmed that Tobias heart is perfect!. She said that even though this test can not rule out some conditions that are only evident after birth, Tobias little heart is functioning as normal as it can be. She even said that we do not have to come back for any follow up with her.
After the good news, we went to the Ronald McDonald house, which is a couple blocks from the hospital. To those who are wondering if this has anything to do with the McDonald food chain, the answer is yes. Ronald McDonald started this foundation in order to help families that have children staying in a hospital that is far from home. The house provides free (or almost free) lodging so that families don't have to separate from their other children and to relieve them from the financial burden that would be to stay for many days in a hotel close to the hospital.
As soon as we got into the house, the manager explained us how things work there and then a volunteer lady gave us a tour of the facilities. The house is amazing. Not only the amenities are great, but you can feel the great energy and charisma of the people working or volunteering in there. The rooms are the same as any hotel room, then, in the huge living rooms, they have games for the bigger kids (pool table, Foosball, air hockey) and they also have an awesome playground for the smaller kids. There are two huge kitchens and dining areas, so that you can cook if you need to. They also have several organizations that volunteer to provide free lunch and dinner most days of the week. What it amazed me the most was that this place functions totally on donations and volunteers that offer their services so that families like us can feel more at home and less in a hospital.
I know that the pregnancy hormones and all the difficulties that we have had don't help much and I have been overly emotional than normal, but when we were having the tour, I felt tears coming to my eyes more than three times. Finally, when we left, I told John that I was feeling like crying and as soon as I said that I started crying like a baby. He asked me if I was crying because of Tobias or because all the good people that we saw in the McDonald house. I just managed to say "yes", and then kept crying. So he kept asking me the same questions, and I kept saying "yes". Finally I stopped crying and told him that I was very emotional from knowing that such a great place that helps hundreds of families with babies in the NICU functions entirely on people that offer their help without wanting anything back. The truth is that I was also feeling very fortunate because Tobias is going to be born in the US.
I have never felt in my heart the necessity of becoming an American citizen, but today I felt bad that I am not one yet (close, but not quite there yet). I still love my home country Colombia and I am very proud to be a Colombian, but today I really wanted to say: I am proud to be an American. Just in case somebody is wondering, I am a legal resident..hehe ;).
As you can see, I already love the Ronald McDonald House. We don't know if we are going to be able to stay there because we don't know if there will be available rooms when Tobias is born, but even if we can't stay, I'm already a number one fan of this foundation and will try to help as much as I can. If somebody else wants to join me that would be great!

Corazon feliz....

...y sano!. Hoy tuvimos una ecocardiograma fetal y consulta con el cardiologo pediatra. Pero dejenme comenzar desde el principio. Desde que Tobias fue diagnosticado con el O y yo empece a hacer mi propia investigacion en internet, encontre un grupo de mamas que han tenido bebes con Os, o que estan actualmente esperando estos pequenines. Este grupo es lo maximo!. Nunca habia conocido mujeres tan fuertes y luchadoras, asi como a sus bebecitos que son un ejemplo vivo de las mamas. Luchan hasta salir adelante. Hablando con ellas, me entere que un ecogardiograma fetal es considerado un procedimiento de rutina en bebes con Os. Aunque el perinatologo no lo habia mencionado, le parecio una buena idea cuando se lo sugerimos.

El ecocardiograma es basicamente una ecografia dirigida especificamente al corazon del bebe en donde analizan en detalle todas las estructuras del corazon. Tobias no queria colaborar mucho. Desde que llegamos al consultorio le empezo a dar hipo y le continuo durante la primera parte de la ecografia. Despues decidio moverse y contorsionarse de un lado para otro de tal manera que cada vez que la tecnica conseguia una buena imagen del corazon, el se movia para el lado contrario. Por supuesto, todas las mediciones tomaron el doble de tiempo y hubo un punto en que la tecnica me hizo acostarme de lado esperando que asi Tobias se acomodara en una posicion adecuada para poder terminar el examen.

Mi mama tiene la teoria de que el se movia tanto porque yo le transmitia mis propios nervios y ansiedad. Pueda que tenga razon, pero lo que yo creo es que a Tobias le va gustar ser el centro de atencion y desde ya quiere que todo el mundo le pare bolas. Y lo esta consiguiendo!. Imaginense, va a ser el unico miembro de la familia sin tener ombligo!.

Bueno, volviendo al tema del corazon, despues del examen nos reunimos con la cardiologa pediatra y ella nos confirmo que el corazon de Tobias esta perfecto!. Nos dijo que algunos problemas no se detectan sino hasta despues del nacimiento, pero por ahora el corazoncito de Tobias esta funcionando como debe ser e incluso nos dijo que no creia que necesitaramos volver a ninguna cita con ella.

Despues de las buenas noticias decidimos ir a visitar la casa de la fundacion de Ronald McDonald (Ronald McDonald House). Para los que se estan preguntando si tiene algo que ver con la cadena de restaurantes de McDonalds, la respuesta es si. El fundador de McDonalds creo esta fundacion para ayudar a las familias que tienen hijos hospitalizados y viven lejos del hospital. La fundacion otorga alojamiento gratis para que las familias no se tengan que separar de sus otros hijos y para aliviar un poco el cargo financiero que seria pagar un hotel cerca del hospital.

Tan pronto entramos a la casa la gente que nos recibio nos explico como funciona todo y tambien nos dio un tour por el lugar. La casa es espectacular, no solo las instalaciones son buenisimas, pero la energia que se siente y la calidad de la gente es indescriptible. Los cuartos son iguales a un hotel, en los salones comunales hay juegos para los ninos mas grandes (mesa de billar pool, futbolito, hockey de aire) y tambien tiene un parque para los ninos mas pequenos con columpios y rodaderos de pelicula. Hay dos cocinas grandisimas por si uno necesita cocinar y la comida en la alacena es gratis. Tambien hay organizaciones que proveen almuerzo y comida a los huespedes, sin ningun costo. Lo que me dejo mas asombrada fue la gente, el lugar funciona a punta de donaciones y de voluntarios que ofrecen su trabajo por el bien de los demas. Yo se que por el embarazo y todas las otras cosas que han pasado, estoy un poco mas sensible que de costumbre, pero mientras nos daban el tour, casi me pongo a llorar como tres veces. Y finalmente cuando salimos, le dije a John que me daban ganas de llorar y ya no me pude aguantar mas. John me preguntaba que porque estaba llorando, si por el bebe o de ver gente que apoya una buena causa, y yo le decia siii, entonces el volvia y me preguntaba, y otra vez yo le decia siii. Hasta que me calme y le explique que me emocionaba ver que un lugar asi, que apoya a cientos de familias, de las cuales la mayoria tiene sus bebecitos en la unidad de cuidados intensivos, puede funcionar tan bien y sobretodo gracias a la ayuda de mucha gente que no pide nada a cambio. La verdad es que me siento muy afortunada de que Tobias va a nacer en este pais. Y aunque en mi corazon nunca habia sentido la necesidad de hacerme ciudadana de EU, hoy me dio pesar de que todavia no lo soy. No se preocupen, todavia amo a Colombia con toda mi alma, y siempre me sentire orgullosa de ser colombiana.

Bueno, como veran, esa fundacion me dejo impresionada y desde hoy me sumare a la causa. Todavia no sabemos si nos vamos a poder quedar alla, al menos por las primeras semanas que Tobias este en el hospital, porque depende si hay cuartos disponibles cuando Tobias nazca, pero incluso si no podemos quedarnos alla, desde hoy soy fan numero uno de esta fundacion y me sumare a su causa. Si alguno se me quiere unir seria super!.

Wednesday, July 21, 2010

La casa vacia

Nico, te estamos extranando mucho!!! Todos (Emily, Tobias, Mami y "Daddy") estamos contando los dias para tenerte aqui con nosotros otra vez. La casa se siente muy vacia. El fin de semana pasado fuimos a acampar y te pensamos mucho todo el tiempo. Pero ojala que te estes divirtiendo mucho en Colombia!. Solo faltan 10 dias mas para poderte dar un abrazo gigante!!
Con respecto a Tobias, no tenemos nada mas que contar, al menos de la parte medica. Tobias se mueve mucho todos los dias y aveces tambien le da hipo. La proxima semana tenemos cita con el cirujano y tambien un tour por el hospital. Ojala que con esas dos cosas podamos saber un poquito mas como va a ser la movida cuando Tobias nazca. Hoy me he sentido bastante estresada y ansiosa tratando de planear como vamos a manejar todo cuando estemos en el hospital y lejos de la casa. Ojala que podamos tener un plan pronto, asi tengo una cosa menos de la que preocuparme. ;)

Muchas gracias a todos por los mensaje de apoyo, oraciones y buena energia que nos han mandado. Eso significa mucho para nosotros!!.

Empty house

Nico we are missing you!!. Emily, Tobias, Mommy and Daddy are counting the days to have you here with us again!. The house feels really empty.
We went camping last weekend and thought about you all the time. But hopefully you are also having a lot of fun in Colombia!. Just 10 more days to give you a big hug!!

We don't have any more medical updates about Tobias. He seems to be doing great, moving around a lot and having some hiccups. Next week we will meet with the surgeon and we will also have a tour around the hospital. Hopefully we will know a little bit more of how things are going to work out. Today I am feeling very stressed and anxious thinking on how are we going to handle everything being in the hospital and far from home. Hopefully we can figure out something soon, so I have one less thing to worry about.;)

Thank you so much for all the good comments, prayers and positive energy that everybody has sent to us. It really means a lot to us.!

Tuesday, July 13, 2010

Second advanced ultrasound

As I mentioned yesterday, today we had our second ultrasound with the perinatologist. I am pretty sure Tobias knew what was coming because he was super active in the morning and you could even see my belly moving from side to side with his little kicks and rolls. The good thing is that during the ultrasound he was quiet and the doctor could measure everything very well. In the picture you can see his face, and with a little of imagination you can see where his eyes, nose, and mouth are.

After the technician measured Tobias' head, abdomen and legs, the doctor came in and made his own observations. From the moment we saw the first images of the ultrasound we knew the omphalocele was still there. What a surprise!!. Not really!. The bad thing is that it looks a lot bigger than before. This could just be due to the fact that Tobias has also grown. The doctor didn't have the file from our previous ultrasound so he couldn't tell us for sure if the omphalocele has grown in size or not, but it is very obvious that it has gotten bigger. However the doctor doesn't think this is a big deal, he said the important thing is that the abdomen has also grown, so the ratio abdomen:omphalocele hasn't changed.

John asked him if the O was considered a "giant" or not (I'm going to called it O from now on, so I don't have to type so many letters;)). What I have read in the medical literature is that giant Os are bigger than 5cm and in general are more difficult to correct right after birth, so, of course, this is one of the questions that seem to live in our heads day and night. The doctor reply was "No, I don't think it is giant, only large". I really don't know how he knows this because he didn't do any measures on the O, but we are hoping and praying he is right.

As I mentioned yesterday, we were hoping to see that only part of the liver is in the O, but we didn't have positive news in this regard. The O seems to contain most of Tobias liver and a little bit of his stomach.

But changing to more positive news, the doctor is very confident that Tobias only has an "isolated O", which means that there are no other defects and the diaphragm is not compromised. This is translated into a more simple (although still very complex) surgery. Tobias is also practicing breathing, which means his little tiny lungs are opening and closing and getting ready for the big day!!!. His little heart was also monitored very close and for a very lung time (an eternity to us), but the final conclusion was: perfect heart = happy parents!!.

The perinatologist we saw this time was different from last time, but he also seem to be very optimistic about Tobias. One of the things he said was: "I have no doubt that this can be fixed". I don't have to tell you that at that point I almost started crying again, only this time was more from relieve than worry.

Ok, finally he gave us the name of the pediatric surgeon and we got an appointment for July 29th.

I almost forgot, but Tobias is growing right on track. At least in terms of his head and femur measurements. As expected, his abdomen is about three weeks behind.

Finally, we had a consultation with a geneticist. She seemed to know the basics, nothing that I already didn't know from my previous genetic classes and my old friend Google. In fact I ended up answering more questions for her than what she did for us. In summary, we would like to have more genetic testing done. Tests that can be more fine and detailed that what we already did. So the genetic counselor is going to see if the lab that performed the previous test saved some of the amniotic fluid and also if they perform the test we want, which is called Chromosomal microarray analysis (CMA). If they don't have more of our sample, it really is not a big deal. We just won't do any more testing. The true being said, I already love Tobias as if I were holding him on my arms. I know that this unconditional love from mommy and daddy will help us handle any other issue that we may encounter in this long road that is ahead of us.

Segunda ecografia avanzada


Como les conte ayer, hoy tuvimos la segunda ecografia con el perinatologo. Tobias seguro sabia lo que le esperaba porque por la manana estuvo super activo y hasta se podia ver mi estomago moverse de un lado para otro cada vez que el se movia. Lo bueno es que durante la ecografia estuvo mas o menos quieto y el medico pudo medir todo muy bien. En la foto se ve la carita, y con un poco de imaginacion se pueden ver los ojos, nariz y boca, que segun el medico estan perfectos.

Despues de que la tecnica en ecografias midio la cabeza, el abdomen y las piernas de Tobias, el medico entro he hizo sus propias observaciones. Desde que vimos las primeras imagenes de la ecografia supimos que el onfalocele todavia esta ahi. Que sorpresa!!.Ja!. Lo malo es que se ve mucho mas grande que antes, lo cual puede deberse solo al hecho que Tobias tambien ha crecido. El medico no tenia el archivo de la primera ecografia entonces no nos pudo decir con certeza si el onfalocele ha crecido mas o no, pero es obvio que si. El le resto importancia diciendo que lo importante es que el abdomen tambien ha crecido, asi que en ultimas el radio abdomen:onfalocele no ha cambiado.

John le pregunto si el O (le voy a decir O de ahora en adelante para no tener que escribir tanto..) era considerado "gigante" o no. Lo que yo he leido en la literatura medica es que los Os gigantes son de mas de 5cm y por lo general no pueden operarse inmediatamente, asi que por supuesto esa es una de las inquietudes que esta todo el tiempo rondandonos en la cabeza. El doctor dijo que no, aunque no se como, si no lo midio, pero en fin, dijo que era grande pero no gigante.. Esperemos que tenga razon.

Como escribi ayer, una de las cosas que esperabamos ver es que solo una parte del higado esta en el O, bueno, pues en este sentido las noticias no son muy buenas, el O parece contener gran parte del higado y un poquito del estomago.

Cambiando a las noticias positivas es que el doctor es confidente que Tobias solo tiene lo que se llama un "onfalocele aislado", esto quiere decir que no hay otros defectos aparentes y el diafragma no esta involucrado, lo que hara la cirugia un poco mas sencilla. Tambien pudimos ver que Tobias ya esta practicando respirar, lo que quiere decir que sus delicados pulmones se estan abriendo y cerrando como debe ser. Yuppi!!!. El corazoncito tambien fue observado de cerca y por un largo rato (eternidad para nosotros), pero al final la conclusion fue: corazon perfecto = papas felices!!.

El perinatologo, aunque no era el mismo de la vez pasada, tambien se mostro muy optimista y una de las cosas que nos dijo fue "No tengo duda de que esto se puede arreglar". No me sobra decir que ha ese punto casi me hace llorar otra vez, aunque esta vez mas de alivio que de preocupacion.
Bueno, por ultimo, nos dio el nombre del cirujano pediatra para que lo contactaramos y pidieramos una cita con el. Nos la dieron para el 29 de julio.

Ahh, se me olvidaba decir que Tobias esta creciendo como debe ser, al menos en terminos de las medidas de la cabeza y el femur. Como es de esperarse, su abdomen esta midiendo unas tres semanas menos de lo que deberia ser.

Bueno, finalmente tuvimos una pequena consulta con la geneticista, pero la verdad fue un verdadero fracaso. Ella parecia saber lo basico, nada que yo no hubiera ya averigaudo gracias a mi amigo Google y a mis previas clases de genetica. De hecho, yo termine respondiendole las preguntas que ella se hacia a si misma. En resumen, a nosotros nos gustaria hacer algunas otras pruebas geneticas, un poco mas refinadas que las que ya hicimos, entonces ella va a ver si el laboratorio guardo una muestra de liquido amniotico y si ellos hacen la prueba que queremos hacer que se llama Analysis de microarreglos cromosomales (CMA por sus siglas en ingles). Si no tienen la muestra pues no es nada del otro mundo, simplemente no haremos ese examen. La verdad es que yo ya quiero a Tobias como si lo tuviera en mis brazos y se que ese amor incondicional de mama nos ayudara a superar cualquier otra cosa que se presente en el camino.

Monday, July 12, 2010

Manana..

Manana es nuestra siguiente ecografia y cita con el perinatologo. Afortunadamente el grupo de Medicina Materna y Fetal viene todos los martes a Ft Collins, asi que no tendremos que viajar a Denver por un rato.

John y yo hemos estado hablando sobre esta cita en la que podremos ver a Tobias una vez mas. En el fondo de nuestros corazones deseariamos ver que el onfalocele ha desaparecido y todo esta donde debe estar, pero sabemos que eso seria un milagro. Asi que aqui siendo mas realistas esto es lo que esperamos de la cita de manana:

1. Que el onfalocele siga conteniendo solo parte del higado.
2. Que el onfalocele todavia este midiendo 3cm.
3. Que no hayan defectos o problemas en otros organos.
4. Que Tobias este midiendo exactamente lo que mide un bebe de 25semanas y 2 dias. Para ser honesta, yo tengo una obsesion con esto y espero que Tobias no este ni mas grande ni mas pequeno de lo que debe ser. Si esto es asi, Tobias tendra menos chances de tener otro sindrome que a veces esta asociado con onfalocele y que se llama Beckwith-Weidemann.

Por ultimo esperamos que nos den las citas para reunirnos con el cirujano pediatrico y con el medico obstetra que estara a cargo de la cesarea.

Manana a las 10am, 9am hora de Colombia por favor tomen un minutico para mandar deseos positivos hacia nosotros. Manana por la noche (despues del trabajo) espero escribir otra vez para contarles como nos fue y esperemos que sean buenas noticias.

Tomorrow..

Tomorrow we have our next ultrasound with the perinatologist. Fortunately, the Maternal and Fetal Medicine (MFM) group come to our town every Tuesday so we won't have to drive to Denver for a while.

John and I have been talking about what to expect for this appointment. Deep in our hearts we hope for the omphalocele to have dissapeared on its own but we know this would take a miracle. So here are our more realistic expectations for tomorrow:

1. Omphalocele still contains only part of the liver

2. Omphalocele is still only 3cm

3. No defects or issues in other organs

4. Tobias is growing right on track (I have to admitt that I am a little bit obssesed with this, I would like to see that Tobias is exactly 25weeks 2days and do not look bigger or smaller). If he is right on track that would decrease the chances of him having other issues that can be associated with omphaloceles such as Beckwith-Weidemann syndrome.

In addition I would like to get our appointments set up to meet with the pediatric surgeon and with the OB that will be performing the C-section.

Please keep us in your thoughts. I will update tomorrow night (after work), hopefully with some good news.

Sunday, July 11, 2010

Good news!

We received the news about Tobias' omphalocele on June 8, 2010. Two days later we found ourselves driving to Denver to see the perinatologist and get our first level II ultrasound. At this point we had already done our own research regarding omphaloceles and we knew the road ahead of us was not going to be easy.
The perinatologist confirm what we already knew: Omphaloceles are frequently associated with chromosomal abnormalities such as trisomies 18 and 13 and also with other physiological defects, especially in the heart, urinary and neurological systems.
We received our little piece of good news when the ultrasound revealed that besides the omphalocele, Tobias seems otherwise perfect. The doctor took a couple of minutes looking at the heart and after what to us appeared as an eternity, he said he didn't see anything abnormal. Good news!!
However, the possibilities of chromosomal abnormalities can only be discarded by a direct analysis of the baby's cells. To do this the doctor has to obtain a sample of the amniotic fluid using a procedure called amnioscentesis. Even though this procedure has some risks, we decided it was the best thing to do. The only problem is that the results take at least 10 days to be ready. This would be a very long wait.
All of this happened two days before our planned trip to Colombia. This was not the starting we were expecting for our vacation, but for good or bad, we were going to be surrounded by lots of family by the time we were able to get the results.
Ten days later, with my heart pounding on my chest, I made the call to Denver and we received more positive news!. Tobias has all the chromosomes he is suppose to have. No more, no less!.
Ok, after all these, we have an idea of what will be the plan to follow. Tobias will be monitored by our perinatologist every 4 weeks to make sure all organs are growing and functioning how they are expected to. The omphalocele, which we know for now is about 3cm and contains about half of the liver will also be monitored. This will help the surgeon to decide what will be the mode of action once Tobias is born. In terms of my own plans of having another natural and drug-free birth, the doctor was very clear that it will not be possible. Tobias will have to be born by C-section in an specialized hospital in Denver. This will help the omphalocele to suffer as little damage as possible and Tobias will have all the attention he will need in the neonatal intensive care unit.
Being in Denver will be a little bit complicated for our family. Emily and Nico go to school in Fort Collins and Emily seems to be chronically attached to mommy ;). However we will do as much as we can to make sure everything goes OK. What is not in our hands is in God's hands and that is enough to us.

Buenas noticias!

Las noticias sobre el onfalocele de Tobias las recibimos el 8 de junio, 2010. Dos dias despues hicimos el viaje de hora y media a Denver a ver el perinatologo y tener la ecografia de segundo nivel. A este punto ya habiamos hecho nuestra propia investigacion sobre onfaloceles y sabiamos que lo que se venia encima no era facil.
El perinatologo confirmo lo que ya sabiamos: Onfaloceles estan frequentemente asociados con anormalidades geneticas como trisomia 18 y 13 y con otros defectos fisiologicos, usualmente en el corazon, sistema urinario y sistema neurologico. Afortunadamente la ecografia revelo que sin contar el onfalocele, Tobias parece perfecto. El doctor se demoro unos minutos mirando el corazon. Y aunque ha nosotros nos parecio una eternidad, finalmente dijo que no veia ninguna anormalidad. Buenas noticias!.
Sin embargo, la posibilidad de anormalidades geneticas solo pueden descartarse completamente con un analisis directo de las celulas del bebe. Para esto el doctor tiene que obtener una muestra de liquido amniotico mediante un procedimiento que se llama amnioscentesis. A pesar de que este procedimeinto tiene algunos riesgos, decidimos que era lo mejor. Lo unico malo es que los resultados se demoran por lo menos diez dias, asi que seria una larga espera.
Todo esto ocurrio dos dias antes de nuestro viaje a Colombia. No era lo que esperabamos para el comienzo de nuestras vacaiones, pero para bien o para mal, estariamos rodeados de familia cuando recibieramos las noticias.
A los diez dias, mientras el corazon me latia rapidamente, hice la llamada a Denver y recibi mas noticias positivas!. Tobias tiene todos los cromosomas que debe tener, ni uno mas ni uno menos!.
Bueno, despues de todos estos acontecimientos sabemos mas o menos cual es el plan a seguir. Tobias va a ser monitoreado por el perinatologo cada 4 semanas para asegurarnos que todos los organos estan creciendo como debe ser. El onfalocele, que por ahora sabemos es alrededor de tres cm, y contiene mas o menos la mitad del higado tambien sera monitoreado para ayudar al cirujano a decidir cual sera el modo de accion una vez que Tobias nazca. En terminos de mis planes para tener otro parto natural y sin drogas, como el de Emily, el medico dejo muy claro que no sera posible. Tobias tendra que nacer por cesarea y en Denver, esto para asegurarnos que el onfalocele sufra lo menos posible y para que Tobias pueda recibir toda la atencion que necesita en la unidad de cuidados intensivos para neonatos.
Tener que estar en Denver sera un poco complicado porque Emily y Nico van al colegio en Fort Collins, y Emily sufre de mamitis cronica ;), pero esperamos hacer lo posible para que todo salga bien. Lo que no esta en nuestras manos, esta en las de Dios y eso es suficiente para nosotros.

The story begins

Even though I have never done any blogging, I decided to start this one so that all our family and friends can be informed regarding the progress of Tobias Mark. We will see if I can keep up with it since I will have to write every post in both English and Spanish. In the Spanish version I asked people to be cool with the spelling because this computer doesn't have a Spanish keyboard. For all our English readers I apologize for any grammatical errors. Even after these many years of speaking, thinking and dreaming in English, I still have some difficulty with my second language. Hopefully John will have some time to proofread some of the posts.;)
Tobias' story begins on Valentine's day, February 14, 2010. That day we found out that we were pregnant with our third child. What a perfect gift. The first several weeks of my pregnancy were uneventful, as any other and the days just flew by. In our first OB appointment on week 9, we saw the baby was fine and we saw his heart beating. Everything seem normal and we anxiously awaited for week 20 in which we would finally find out the baby's gender. Nico was hoping for a boy, so that he could have a playmate. He didn't think it was a problem that they will be almost 11 years apart.
During the ultrasound the technician was very nice and she didn't make reference to any problem. When she finished, we had to wait for about 20min to talk to our doctor and finally know our baby's gender. We didn't think this was weird because we had gone through the same process when we were expecting Emily.
Unfortunately, the doctor told us that our baby has an abdominal wall defect called an Omphalocele. This means that baby's tummy didn't close completely during its formation and as a result some of the organs are out of the body and surrounded by a delicate membrane.
While John and I were still trying to absorb the news and awake from the nightmare, the doctor told us that we had to see a perinatologist to have a level II ultrasound. This is to look for any other defects that are usually associated with Omphaloceles. Finally he asked us if we still wanted to know the baby's gender and we managed to bring words to our mouths and said yes. Our baby is a boy!!.

La historia comienza

Aunque nunca he usado un "blog", decidi empezar este para mantener a toda la familia y amigos informados acerca del progreso de Tobias Mark. Veremos que tanto tiempo nos queda para mantenerlo actualizado ya que tocara escribirlo en Espanol y en Ingles. Para los que lo leen en espanol por favor disculpen la ortografia. Este computador no tiene la version en espanol.
La historia de Tobias comienza el dia de san valentin, febrero 14, 2010. Ese dia nos enteramos que estabamos esperando nuestro tercer hijo. Fue el regalo perfecto!. Las primeras semanas de embarazo fueron como cualquier otro y se pasaron volando. En la primera cita al medico, en la semana 9, supimos que el bebe estaba bien y vimos su corazoncito latir. Todo parecia normal y esperamos ansiosos a la semana 20 en la que al fin conoceriamos el sexo del bebe. Nico queria que fuera un nino, asi tendria otro nino con quien jugar, no importa que se llevaran casi 11 anos de diferencia.
Durante la ecografia la tecnica fue muy querida con nosotros y no hizo referencia a ningun problema. Cuando termino nos toco esperar unos 20min para hablar con el medico y por fin conocer el sexo del bebe. No se nos hizo extrano, ya que lo mismo habia ocurrido cuando estabamos esperando a Emily.
Desafortunadamente el medico nos dio la noticia de que nuestro bebe tenia un defecto de la cavidad abdominal llamado un Onfalocel. Esto quiere decir que su barriguita no se cerro completamente durante la formacion y que algunos de sus organos estan por fuera rodeados de una delicada membrana. Mientras John y yo todavia tratabamos de absorber la noticia y de alguna manera despertar de la pesadilla, el medico nos dijo que deberiamos ir lo mas pronto posible a una cita con el perinatologo para tener un ecografia de segundo nivel y saber si existian otros defectos que usualmente estan asociados con onfaloceles. Finalmente nos pregunto si todavia queriamos saber el sexo del bebe y logramos balbucear que si. Nuestro bebe es un nino!!!