Saturday, February 27, 2010

In the hospital

We are in the hosptial. We came to the ER because Mateo hadn't had a bowel movement in about 12+ hours, and was vomiting. I was worried about a blockage, so I called his surgeon who told me to get to the hospital. After being here since 7am Friday morning, we've had x rays, blood tests, the works, and it doesn't seem to be a blockage. They are assuming he as an infection of the bowel. He is currently on IV fluids ONLY, and receiving antibiotics.
It is SO HARD to listen to your baby cry with hunger and not be able to do a thing about it. I can feel and almost hear my heart breaking.
I'm not sure how long we will be here, we did x rays again this morning, and we are waiting for the results. He has since had a bowel movement and is passing gas, so things are looking up!! His surgeon is going to let us do drip feedings through the Gtube here shortly, that should make Mateo feel a little bit better.
Please send some prayers for us!

Thursday, February 25, 2010

tired times

I want to share my experiences, so that other mom's like me, know that it isn't 'just them'.

Lately, Mateo has been having problems with his GT site, it has been red, and growing granulation tissue around it, which means a trip to the doctor, and a prescription for silver nitrate, which entails me, putting my son through physical pain and literally BURNING the tissue off of him. I HATE IT! It breaks my heart.

And on top of that, we haven't been able to find a pouch that works for his ileostomy. He is needing to be changed EVERY day, sometimes more. His skin around his stoma gets irritated and burnt from his stool, and I keep taking him in, but nothing fixes the problem.

It is so frustrating! All I can do is keep trying. TRIAL AND ERROR. But it gets hard to stay positive after a while. I have said so many prayers, tried so many things.... I wish it were easier!!

Monday, February 22, 2010

Diagnosed with HD

After Mateo was born, I was having a hard time getting him to latch. He wouldn't eat. Then he began to vomit yellowish liquid (bile). The nurses said this was common, that he had swallowed amniotic fluid. Hours later, Mateo had not had a bowel movement. Nurses also said this was normal and gave him a suppository-to no avail. They tried syringe feeding him a sugar water, which caused him to vomit more. I kept insisting that something was wrong with my baby, but I kept hearing "it's normal". Once the pediatrician came in to do his exam (the NEXT day) I told him what was going on. He ordered xrays. Mateo's bowel was so big, they were worried that it might burst. Mateo was taken in the neonatal ambulance to a larger hospital in our area for surgery.

We met with the surgeon, Dr. George Wadie, who told us that he had a few things in mind. He said that it could be as simple as a meconium plug, which is when the first black, tarry stool is too thick to pass and it backs up. It is treated by simply going in and cleaning out the intestine. Another possibility is that he could have a disorder that would require surgery. He would do an exploritory surgery and give us more detail then.

Mateo went in for the procedure, and we were told that it was NOT a meconium plug. They wanted to do a rectal biopsy to check for ganglion cells. So, Mateo goes in for the biopsy, and gets an ileostomy. An Ileostomy is where they cut his small intestine, seal one end, and bring the other to the surface of his belly, so he can pass stool. When the biopsy results came back, it wasn't good news. Mateo lacks ganglion cells in his colon and part of his small intestine. He was diagnosed with Hirschsprungs Disease.

After having the ileostomy, Mateo still was not able to pass stool. He had to go in to have his ileostomy revised, because the lack of ganglion cells was more extensive than first thought. From this point, Mateo had a central line IV for nutrition, an NG tube, tubing down his nose to his belly to remove bile and let his bowel heal. This was eventually used for drip feedings and was replaced with a G-Tube- a mic key button system.

Mateo lived in the NICU from Oct 21 08 until Dec 31 08. He was kept for observation, most kids with such a severe case of HD have problems gaining weight, since they have a hard time absorbing nutrients with such a small section of working bowel.

Mateo was tried on my breast milk, which he couldn't break down, and was tried on several formulas. The one that worked is called Neocate Infant, which he is still using today.

As of today, Mateo is 16 months old. He still has an ileostomy. He also has his mic key button feeding tube, but as done so well with feedings and weight gain, he only has to be connected to it at night. :) He is still on formula, and his diet is trial and error. Dairy, sugars, eggs, and greasy/fatty foods are NO NO's for him. But he is a happy go lucky little man for all he has been through. He continues to thrive and grow!

As for the future and what it holds for Mateo, it is up in the air. We see pediatricians, his surgeon, a gastroenterologist at Doernbecher Children's hospital in Portland, as well as Ostomy specialists. We are at doctors appointments one a month at least.

The last I was told is that Mateo will need a "lengthening procedure" which means that his surgeon will go in, and cut his small intestine-like an accordian. But this has to be done when he's a little bigger, so his intestine will be larger in diameter. From there, we let him heal, then do the "pull through". They want to start this process when he is of potty training age, and is able to pee in the toilet.

So for know, we are playing the waiting game.


Mateo was a planned pregnancy, and I had a due date of Oct 17th 2008. I had all the prenatal care, and I was taking pre natal vitamins before I conceived. We went to a genetic specialist for ultrasounds- to be sure all was well with the pregnancy. I was told that everything was fine and he was healthy. I went into Labor on Sunday Oct 19th. The contractions woke me from my sleep. I labored at home all day, until my husband Carlos got to axious and forced me to the hospital. :) I stayed the night at the hospital, and after hours and hours of labor and an epedural we were having a baby! Hours of pushing and my OB realized Mateo was "sunny side up" and wanted to take him C- Section. I was intent on having a vaginal birth. We ended up having to use the "vacuum". On the 2nd try, Mateo was born! He had a temporary "cone head", one strong set of lungs LOL, 1o fingers and 10 toes. He looked perfect. Doctors told me I gave birth to a happy healthy little boy!