Tuesday, March 5, 2013

High Risk Visit

February 27, 2013 was a big day! Finally we made it to our 2nd follow up visit with the high risk nursery clinic. The first time it was scheduled we had to cancel the morning of because one of the three kept us up all night with a fever/cold.... The 2nd time, it was the stomach flu... Again we canceled the morning of due to no sleep and lots and lots of throw up but last week... We made it!

The six of us were out of the house by 7:45 a.m.! That in itself is a major accomplishment! And...can I just say that the clinic is soo far! About an hour or so away from us...How, really, how did that I make that commute almost every single day for 3 1/2 months?!

So what is the high risk nursery follow up? Well let's face it, when a baby is born at 25 weeks gestation, there are no guarantees that everything is going to be okay. None whatsoever. When we brought the trio home, I knew in some ways our journey was just beginning.  Many things could have interfered with their growth and development, and still can.  The high risk clinic is made up of a team of specialists that assesses their progress.  And if necessary will track them for FIVE years.

Most importantly they have experience working with preemies and know that most likely a 25 weeker will not be caught up entirely by the age of two. They do not stop adjusting age until the kiddos are three.  And another cool thing, one of the doctors we saw that day was in our delivery room and the first to hold Sofia.  He saved Sofia's life. And today she is right on track. At 21 months she is exceeding some milestones for her adjusted age of 17 months.  She refused to do almost everything that was asked of her because she was too busy saying hi and interacting with everyone. Sofia's speech has really taken off this month. She is now saying 2 word phrases like bye milk, night mama, bye dada, more peas, and bye poo poo, and yes Dr. G sees potty training in our near future! She is almost running, and the only concern her physical therapist has is her inability to sometimes stop.

Preemies (and some full term babies) don't always follow the order of things, it's called sprinting. In her case, she walked before she learned to stand still in one place and now has a hard time stopping especially when she is moving too fast.  She works on this everyday and our therapist is predicting she will be released from PT when she turns two in May!

They boys are not too far behind and actually performed quite well.  They scribbled, said a couple of words, pointed to some body parts and were quite social.  There are a couple of minor gross motor concerns we need to keep our eyes on:
Carlos favors his left side and tilts his head to the left while Marcos prefers his right side.  Marcos has some stability issues but he has not been walking as long as his siblings.  He'll get it figured out.  This may allow the boys to get PT for an additional six months, we hope.

High risk is not too concerned with their speech delay.  Though the speech evaluation Marcos had in early February gave him the diagnosis as severely delayed.  The doctors are certain our trio will catch up, it will just take a long time.  For now Marcos will start getting more services (speech therapy) and his hearing loss is the main concern.   He is scheduled to get his 2nd set of tubes on March 19, immediately followed by yet another hearing test that same week.  Now if this doesn't work, we will start  looking at other options like a hearing aid.  As always we are praying and leaving it in God's hands.

For now all lungs are clear and we will continue daily pulmacort and albuterol on an as needed basis.  We hope to take a break again this summer but compared to all the drugs they had in the NICU, it's really no biggie.  They were very happy with their weight and especially their height!  They are still small (Carlos, 21 lb 4 oz, Marcos, 22 lb 1 oz and Sofia, 21 lb. 6 oz); but, as long as they each follow their own growth curve, and continue to stay healthy, I have to be ok with the fact that they may not be on the "regular" chart for awhile.

What else has happened this month?  The trio has said good bye to their bottles!! That's right!  The boys had no trouble, while Sofie kept her morning bottle for a couple more weeks but she hasn't had her morning bottle since last Friday! Finally this house is bottle free!!!!!!! My babies are full blown toddlers!

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