Tuesday, January 26, 2010

Jacob's NICU Follow-Up

While I was in the hospital on bedrest with Jacob, a doctor came into my room and discussed all of the difficulties we would face if he was born that day. He explained in graphic detail all of the disabilities, hurtles and trials Jacob would have to face and overcome in order to survive or have any quality of life. At the time, I was 23 weeks pregnant and the chances of a baby surviving at all or without a physical or mental disability were slim to none. The good news was, that every day I stayed pregnant, the odds of him surviving (and/or avoiding these physical and mental disabilities) increased dramatically. You might be surprised to learn that once I hit 24 weeks every DAY I kept Jacob in my womb meant 3 days less in a Level III NICU. That is huge!

The Neonatologist that came to speak with us was running a study for premature babies born between 24 and 28 weeks. He asked us if Jacob was delivered between 24 and 28 weeks if we would be willing to particpate. You can read about the clinical trial here and for the record, they never put Jacob in harm's way! His health and survival always came first if any part of the study interfered with his ability to be resuscitated at delivery.

After discussing it with Ian, we decided that if I delivered early we did want to be part of the study. The bottom line is that 30 years ago 24 weekers didn't have a fighting chance and because of modern medicine (and the grace of God) children like Jacob DO survive and some (like Jacob) have few, if any, side effects! How amazing that because of past studies, modern technology and new medicines they are able to help babies like Jacob thrive! We decided that whatever the case, we wanted to do our part to help future 24 weekers have higher chances of survival. No parent should ever have to go through what we did with Jacob and if this increases the chance of a 24 weeker's survival then I wanted to help. You can't begin to imagine what it is like to be told that your baby has a 39% chance of living and an 80% chance of him/her having a physical/mental disability. That and the day-to-day drama that comes with not knowing if your baby will still be here in 5 days, 5 hours or even 5 minutes.

As part of the study, Jacob is seen at a "follow-up clinic" at Tufts Medical Center in Boston where he was delivered. They first saw him in January of 2009 when he was 10 months old (6.5 adjusted) and every 6 months thereafter. This past January 19th was the "big" appointment because Jacob is 22 months old (18.5 adjusted) and 18 months is when the child has developed sufficient skills for them to test and determine how he is doing compared to his peers. Most preemies catch up by age 2 and the earliest of preemies (23-28 weekers) usually catch up by the age of 3. We have a long way to go, but this appointment shows us on paper how much progress he has made. The test is not an exact science and if "the toddler" (who shall remain nameless) refuses to cooperate on certain parts of the test it can throw it off. At this appointment, Jacob met with a Neonatologist, a Physical Therapist and a bunch of fellows. They tested him on everything from fine/gross motor skills to language and cognition. This is what they found:

Cognition: 13 months
Fine Motor Skills: 13 months
Gross Motor Skills: 14 months
Receptive Language: 11 months
Expressive Language: 15 months

There were certain tests where he refused to cooperate with the PT, but overall he is where I expected him to be. When people ask where I personally think he is functioning I have been saying 15 months so I was pretty spot on with his skill level. His language has really been lagging behind and I was pretty shocked to see that his expressive language was as high as it is. He only says a handful of words (Mama, Daddy, off, chicken, duck, cat, etc.) and some of his "words" are communication, but not actual words (uh-oh, woof, moo, etc.).

The bottom line is that he is here, he is healthy and he is thriving! I am so happy we decided to join the study and I am hopeful of the results once all is said and done.

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