Posted by: Nancy Brown | December 19, 2006

The baby on paper!!

When you leave the hospital and the NICU they give you a paper. It gives you a list of diagnosis’ that you have. They include all the things you have to remember to tell docs and peds and all that stuff. Ours looked something like this.

Tyler is a 25 and 3/7 week preemie. He was 750 grams at birth ( 1 lb 11 oz.) Diagnosed with a grade III and IV IVH with PVL, resevoir placement for hydrocephalus ( resolved) and ROP rush stage 3 zone 1. Tyler will be home on oxygen for aprox. 7 months. 

As we left the NICU one of the NP told us just take him home and love him. We were all ready to accept our son as a baby in a wheelchair. He was going to be in the coolest wheelchair we could pimp out for him. We had early intervention set up and we had TONS of appointments.

As the months went on EVERYTIME I went to a appointment a doctor told us something bad. I dreaded going. The “toaster head” we had from being a NICU baby was actually craniosynostosis. SURGERY to fix in Feb. The “resolved” hydrocephalus came back with a vengence and we had to be shunted after a HORRIBLE scene of his heart rate dipping with no way to get it back up.  And for an entire month after that we had a shunt malfunction which was hell. After that revison a lot changed.

The therapist we see have never given me much hope for what we would do just because on paper we have that grade 3 and 4 bleed.  It has been so frustrating because I see him everyday be flustered because he wants to be mobile. He wants to sit. All those “normal” things.

So when we hit nine months adjusted and we were still a little behind I got worried and really pushed getting PT. Well we go it. And this is where we start to become the baby that isn’t on THAT paper.

We rolled over at 4 months adjusted, we sat at nine months adjusted, we crawled at ALMOST 12 months adjusted and now we just have to wait for the next step…. WALKING!!!

So not only have we surpassed the physical aspects of “the paper” we are starting to do better in the eye department as well. Today we saw our opthamologist, Dr. Larsen. WE LOVE HIM!! Our eye sight is improving and he sees that we are seeing and focusing a lot better. We don’t have to see him again until JULY!! Thats right. We are slowly graduating to LONG TERM appointments.

We do see our Ped on a regular REGULAR basis for our eating but even in the last week that has gotten tremedoulsy better. Less stress on me and he drinks like a champ. I have never EVER seen my son drink and entire 8 oz bottle in one sitting in my life. We do now. He is eating fruit and eating things I would not have dreamed about it. All because one OT took the time to explain a few things to me about my baby and his tummy.

I know that this may be the High before the low. We aren’t all the way clear. In Feb we have an appointment with Dr. Walker on our head growth. It has been slow on the growth but so has our weight. We are hoping that with a weight gain we can have our head grow and we will be JUST FINE!!

So we aren’t the baby that we are on paper. We know that there are many miracles that have happened in the last 15 months to make that possible. And the fact that he was even able to survive is a miracle in itself.

Thought of the day!!! 

Treasured Gifts
President Thomas S. Monson, Liahona and Ensign, Dec. 2006, 2–8
President Thomas S. Monson

“For a few moments, may we set aside the catalogs of Christmas, with their gifts of exotic description. Let’s even turn from the flowers for Mother, the special tie for Father, the cute doll, the train that whistles, the long-awaited bicycle—even the books and videos—and direct our thoughts to God-given gifts that endure.”

These gifts….. are our babies and the miracles that they are…despite the disablilty or the “ability” that they have.  Thanks for the miracles!!! Thanks for the LOVE of friends. Thank you for my miracle.



  1. Very very very true indeed.

    So many miracles.

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