Thursday, December 30, 2010

3 months! / 3 meses

Yesterday Tobias turned three months old!. Where did the time go? / Ayer Tobias cumplio 3 meses!. Como pasa el tiempo de rapido!!

Tobias has had the fortune to be surrounded by lots of family. / Tobias ha tenido la oportunidad de estar rodeado de un monton de familia

Auntie Anita / Tia Anita

Grandma Paulette / Abuelita Paulette

Uncle Paul / Tio Paul

Uncle Juanca / Tio JuanCa

Tobias and Emily enjoying their uncle JuanCa / Emily y Tobias disfrutando del tio JuanCa

Tobias also had a follow-up appointment with the surgeon and she said he is looking awesome. GREAT!. / Tobias tuvo su cita con la cirujana del O, y dijo que se veia super bien!!!

Saturday, December 18, 2010

Christmas Jars

I just wanted to say thank you to the anonymous person that left a jar full of change in our front porch. I didn't know anything about Christmas Jars until we received this jar and I went to the website I am sure we will be filling a jar this coming year to give next Christmas. I am also sure that the jar we received has something to do with our miracle baby and I will make sure that he knows about it when he is old enough to understand.
I had told John that we should try to have a very special Christmas if we had the fortune to have Tobias home by then. It is definitely going to be a very special Christmas full of love and hope. It doesn't stop to amaze me all the good things that Tobias has brought with him. Not only his smile and peaceful personality, but the knowledge that there are many people that care about our family and always have us in their hearts.
Thank you so much!
Yo solo quiero dar las gracias a la persona que anonimamente nos dejo un tarro lleno de monedas en frente de nuestra casa. Yo no sabia nada acerca de los "tarros de navidad" (Christmas Jars) hasta que fui a la pagina web Estoy segura que el proximo anho estaremos llenando nuestro propio tarro de monedas para regalarle a alguien que lo necesite en la proxima navidad. Tambien estoy segura que nuestro bebe milagro tiene mucho que ver con el tarro que recibimos. Yo me asegurare de que el lo sepa cuando sea lo suficientemente grande para entender.
Yo le habia dicho a John que si teniamos la fortuna de tener a Tobias en casa para esta navidad deberiamos tratar de hacer algo especial para celebrar este anho. Definitivamente va a ser una navidad llena de amor y esperanza.
Yo no paro de asombrarme de todas las cosas lindas que Tobias trajo a esta casa. No solo su hermosa sonrisa y su tranquila personalidad, pero tambien el conocimiento de que hay muchas personas que se preocupan por nosotros y que siempre nos tienen en sus corazones.
Muchas gracias!!

Saturday, December 11, 2010

Neurosurgeon update

In our way to the neurosurgeon

He has blue eyes, just like in one of my dreams. They are not as light as daddy's but they are definitely blue

Last Thursday, Tobias had his appointment with the pediatric neurosurgeon and she confirm what we were expecting: he is going for an MRI of the spine to check for a possible tethered cord. The MRI will be at the end of January or beginning of February soon after he turns 4 months. We are praying the test comes back with good news and no spinal problems.

On the other hand, the neurosurgeon said the two small blisters in his head are indeed cutis aplasia, but is nothing to be concerned about. So Tobias won't have to have any scan or MRI of his head...So nice!!!

Tobias doesn't like to be in his tummy much, but the pillow helps to get some tummy time done

In his 3-month cloths and waiting for his uncle Juanca. He will be here on the 15th to spent some time with his two nephews and niece and his loved Anita. We can't wait!!

Cita con el neurologo

Tobias es en general super tranquilo y no le molesta mucho tener que estar en su sillita para el carro.

El jueves pasado tuvimos cita con la cirujana neurologa pediatra y asi como esperabamos, nos dijo que lo mejor era hacer un MRI de la columna para descartar la posibilidad de problemas en la columna y en el nervio central. El MRI sera a finales de enero o principios de febrero cuando Tobias ya haya cumplido los 4 meses. Roguemos porque todo salga bien.

Por otro lado, la neurologa confirmo el diagnostico de aplasia cutanea pero dijo que era muy leve y relacionado con el onfalocele, asi que no hay de que preocuparnos y no es necesario hacer ningun scan o resonancia de la cabeza...Que Alivio!!!

Como siempre Emily adora a su hermanito

Mientras tanto Tobias sigue poniendose mas fuerte y aunque no es que le guste mucho hacer ejercicios boca abajo, tampoco es que se queje mucho.

Nico tuvo su cumpleanhos y poso orgulloso con su hermanito

Por ahora estamos esperando con ansia a Juanca, que ya llega el 15 para pasar navidad con sus sobrinitos, y por supuesto con su adorada Anita!! Juanca, llega rapido!!

Friday, December 3, 2010


Tobias has started to smile a little bit more each day, but he does it when we are less expecting it. Today we were playing with him in his gym and he gave us three huge smiles in a row. They were precious!!. Of course when I finally got the camera he decided to play shy. Here are some of our failed attempts to make him do it again.

Tobias ha empezado a sonreir un poquito mas cada dia. El problema es que lo hace cuando menos lo esperamos. Hoy estabamos jugando con el en su gimnasio y nos sonrio tres veces seguidas. Unas sonrisas hermosas y gigantes!. Por supuesto cuando fui por la camara y volvi ya se nos hizo el timido. Los videos que ven fueron despues de eso cuando intentamos hacerlo sonreir de nuevo sin ningun exito.

Wednesday, December 1, 2010

Two-month check up

Tobias had his pediatrician appointment for his two-month check up and immunizations. He is now weighting 8lb, 4 oz, which means he gained 1lb and 4 oz in one month. However, he went from the 25th percentile to below 0... Good news is that he is taller than before, measuring at 23 inches and jumping from the 35th percentile to the 50th for height. YAY!!. His head circumference was 15 1/2 staying on the 40th percentile. In summary, the doctor wasn't concern that Tobias is not as chubby as we wanted him to be. He is growing well in other aspects and he did gain some weight, not much, but a little bit is better than nothing.

Not so good news was that we got another diagnosis that may or may not be related to his omphalocele and that may or may not have important implications on Tobias's development. When Tobias was 5 or 6 days old, I noticed two small blisters on his scalp. I showed them to the NICU nurse and the neonatologist and they said it could be due to him lying too much on one side. After that nobody, including me, cared much about the blisters. However, since they are still there, I decided to show them to the pediatrician. He looked at them for about two seconds and he said it was something called "Cutis aplasia". He called one of his older colleagues and the other doctor confirmed it. Cutis aplasia is the lack of skin and sometimes under layers of tissue on the affected area, usually in the scalp. Tobias's blisters are small (the size of which only a mom can notice) and they only affect the skin. Bad thing about Cutis aplasia is that it can be associated with neurological issues, so our pediatrician said that most likely; the neurosurgeon is going to suggest an MRI not only of the spine, but also the head.

Obviously, as soon as I got home, I started doing some research and I found that cutis aplasia can be divided in 9 groups. Group 4 is associated with mid line defects such as omphalocele. So, I really hope and pray that this is only another curiosity of his anatomy but nothing more serious.I should, and in fact I am very thankful for how well things turned out to be. My two major concerns when I was pregnant were that Tobias could have pulmonary issues and would have to be on the vent for too long, and consequently, he would develop oral aversion which is a common problem for O-babies. Fortunately he didn't have any of these issues. But I can't deny that I get frustrated every time we go to the doctor and we get a new thing to worry about without knowing if the new thing is really nothing or something that could impact his normal development. Today I looked at the face of my little guy and asked the question that I didn’t ask myself since I was 20weeks pregnant: Why my little baby?

Ok, enough of self pity!!. Even though I am frustrated, I trust that Tobias is going to continue to develop completely normal, physically and mentally.
Please keep praying for Tobias and sending him good and positive energy. I know all your prayers and good thoughts have a huge impact on my little man!

Chequeo de dos meses

Hoy Tobias tuvo cita con el pediatra para el chequeo de los dos meses y para las vacunas. Tobias esta pesando 8lb, 4 oz lo que quiere decir que subio 1lb y 4 oz en un mes, sin embargo antes estaba en el percentil 25 y ahora esta por debajo de 0.. Lo bueno es que de estatura esta midendo 23 pulgadas y entonces subio del percentil 35 al 50. YUPI!!. La cabezita sigue en el percentil 40 y ahora mide 15 pulgadas y media. En resumen, el pediatra no esta preocupado de que Tobias no este tan gordito como quisieramos porque igual esta creciendo bien en otros sentidos y porque subio de peso, no mucho, pero algo es algo.
Las malas noticias es que recibimos otro diagnostico que puede o no estar relacionado con el onfalocele y que no sabemos si tiene implicaciones importantes o no en el desarrollo de Tobias. Cuando Tobias tenia 5 o 6 dias de nacido yo note que tenia dos vejiguitas en la cabeza y se las mostre a la enfermera y a la neonatologa en la NICU. La neonatologa lo unico que dijo fue que depronto eran de estar acostado mucho de un solo lado y despues de eso nadie le paro muchas bolas. Pero como las vejigas siguen ahi hoy decidi mencionarselo al pediatra y el sin pensarlo dos veces dijo que era algo llamada aplasia cutanea. Para estar seguro, llamo a uno de sus colegas con mas experiencia y el otro doctor confirmo el diagnostico. Aplasia cutanea es la falta de piel y algunas veces de otros tejidos mas profundos en el area afectada, usualmente en la cabeza. Las lesiones de Tobias son pequenhas (del tamanho del que solo una madre se da cuenta) y solo afectan la piel. Lo malo es que aplasia cutanea puede estar asociada con problemas neurologicos entonces el pediatra cree que la neurocirujana no solo nos va a recomendar un MRI de la columna, pero tambien de la cabeza. Obviamente apenas llegue de la cita me puse a buscar informacion y encontre que aplasia cutanea esta dividida en 9 grupos, del cual el grupo numero 4 esta asociado defectos de liena media como el onfalocele y. Asi que confio y ruego porque no sea nada mas.
Yo debo y de hecho estoy agradecida por lo bien que ha salido todo hasta el momento. Mis dos grandes miedos de cuando estaba embarazada eran que Tobias tuviera problemas pulmonares y que le tocara estar intubado por mucho tiempo y desarrollara aversion oral y consequentemente tuviera problemas para aceptar comida. Estos son dos de los problemas mas comunes y dificiles de manejar en bebes con onfalocele. Afortunadamente Tobias no tuvo nada de eso. Pero no puedo negar que es frustrante ir al pediatra y cada vez salir con una cosa mas para precuparnos y que no se sabe si no es nada o si puede ser algo grave a largo plazo. Yo miro la carita de Tobias y me pregunto lo que no me preguntaba desde que estaba embarazada: Porque a mi pobre bebe?
A pesar de mis frustracion, tengo una actitud positiva y confio en que Tobias siga desarrollandose normalmente, fisica y mentalmente. Por favor sigan incluyendo a Tobias en sus oraciones y buena energia. Yo se que eso paga porque paga!