Friday, September 19, 2008

The Dreaded 6 Month NICU Follow Up - (long)

We had our 6 month NICU follow up on Wednesday and it went as I expected, but now I am very emotionally and mentally drained. It's taken me two days to build up the motivation and courage to post about the day and the results from our visit. I think posting this will help put it all into perspective for me, but I'm weepy already so this may take longer than I thought.

I realize that as micro preemies go these guys got off really easy even with Cameron coming home on oxygen. And there are lots and lots of worse things that could have happened; ROP, continued need for oxygen assistance, the list could go on and on... These guys were NICU stars. But they are lagging more than expected in a couple of areas and after waiting on pins and needles for a traumatic early birth, 68 days of roller coaster NICU time, 3 months of working with a physical and an occupational therapist, my own personal medical condition, I think I'm starting to run out of silver linings and steam.

The purpose of the 6 month NICU follow up is to see how the boys are doing physically as well as developmentally to the best of their ability based on their adjusted age. This is an ongoing evaluation that we will go to every 4 to 6 months until they are 3 years old. The boys are actually 5 1/2 months old, but because of their prematurity we will evaluate them at their adjusted age of 2months 26 days as of the day of our visit with the doctors at University of Maryland. This visit is not only a doctors visit, the boys are being evaluated as part of a study of premature babies in Marlyand. Some of the specialists the boys may see/will see include: Developmental pediatrician, nutritionist, occupational therapist, physlcial therapist, psychologist, education specialist, speech and language pathologist, registered nurses and a service coordinator to coordinate all these people.

The day went pretty much as I had been warned, somewhat long wait times but nothing so bad as to make me want to walk out on the appointment, but it did interrupt their eating and napping. The guys both pretty much threw up all their lunch time bottles during observation because so much of the examination required that they be laying down on their backs and bellies. And the room we were in had the thermostat set to 61 degrees so it was way too cold for very low birth weight babies to be naked, and yet that's what they had us do for the majority of the time we were there. Unpleasant for the babies and for my mom and me.

We met with a Neonatologist, the head of the Neonatology department and a representative from Maryland's The Arc: Early Intervention for Infants & Toddlers program (whom we are already working with on the boys physical therapy and other programs to come). I think the head of the department was only called in after the neonatology doctor determined how far behind the boys were and wanted a second opinion, which in my book never bodes well. But she was very nice and enthusiastic and I liked her a lot.

Also in observance was a medical student named David who was charmingly fascinated and excited to sit in on our evaluation, and I like the thought that we were able to help someone in their professional development. He had never been through one of these before either, and some of the things he learned about that day will actually be practical experience for him in the future. He had never seen infants as small and premature as mine, infants with inguinal hernias, an infant with penile chordee, hypospadia and cobra headed penis all in one, and he had never seen a baby post oxygen weaning, so this was a great experience. The head of the Neonatology department was very good about involving him in the physical and even showed him a few things with regards to reflexes and let him try them on the babies (with our okay). It was a neat experience.

I digress...

The boys are measured developmentally on seven areas:

Vision, Hearing, Sensory developmental domains - basic physiological functions of these areas,

Social and Emotional - skills in relating to others,

Cognition - thinking or problem solving skills like putting hand to mouth or social smiling and anticipatory behaviors,

Gross Motor Skills - ability to use his body o perform large movement skills including ability to control his head and trunk, swat at things,

Fine Motor Skills - ability to use his hands and fingers,

Communication - ability to use skills in language and communicating by sounds words and gestures like changes in breathing, vocalizing coos in response to being spoken to,

Adaptive - skills in self-care like being able to eat from a bottle competently, having a good suck reflex, coordinating breathe, suck, swallow process.

Our boys can only do the things I've highlighted in green and some of this only very recently. At the age of 3 months the boys should be able to do the following: Open/shut hands, raises head and chest while lying on stomach, support upper body when lying on stomach, swats at things near him (they do this but barely), mouths objects brought to face (they make ugly faces when you put something other than a bottle or pacifier in their mouths), reaches and grasps with both hands, can hold a rattle (but can't control it or control how long they can hold it). Also they should be able to watch and recognize faces and familiar objects and follow moving objects, turn head toward direction of sound (they hear but can't always look because they have terrible toaster head), imitate some sounds, babble (they just started this this week), react when you call their name or sing or attempt to play, imitates you when you stick out your tongue, smiles and grins, imitates your movements, stares at hands and fingers, plays with fingers, brings hands to mouth (they only started doing this one this weekend but only when there is nothing in the hand).

By comparison (and to give you a gauge as to why I'm so down in the dumps) a baby at their actual age can do or is starting to do the following: try to feed themselves or hold a bottle, rolls from side to side onto tummy and back again, sits with assistance, transfers objects from hand to hand, uses a raking grasp, starts to use hands & knees position, can closely track moving items, notices items far away, responds to sound by making sound, babbles chains of consonants, babbles and pauses waiting for a response, is interested in mirror images, laughs out loud/belly laughs, find partially hidden objects, explores hands with mouth, struggles to get objects out of reach, may start to respond to their own name, drops things and expects you to retrieve them over and over, has distinct preferences for feeding times or types of food.

At this visit the boys were both observed to be at the same skill levels with Cameron slightly more advanced in a couple of areas. Their strengths are socially emotionally on target for a 3 month old baby They show anticipatory excitement towards mom and dad and Granny Cathy the primary care givers. They are both on track as 3 month olds for Cognitive development as they can both track toys moved in circular directions. And both are on track as 3 month olds for Language and cooing when talked to.

Areas they have significant work to do on are Gross Motor skills - Chest up prone, forearm support prone, swatting, and kicking, stepping and standing. Also Fine Motor skills is lacking tremendously and they need to work on hands being unfisted so they can touch and grab as well as reaching for objects. They are performing at 1 to 2 month old levels right now. They will continue to get physical therapy and start occupational therapy, both of which overlap in many areas and functions.

The tone from both doctors was very serious and almost urgent as though we are kind of racing the sun. We go back for another re-evaluation in 4 months and they are expected to be able to lift their heads and chest off of a flat surface. We're so far from that now it seems like we won't be doing it in time for the next evaluation.

I know I should never compare my guys to full term babies but it's very difficult not to. And it's difficult not to compare them together too, and I will always strive to encourage people, myself included, not to compare them. But the motor skills have got to get in check. The guilt that my body failed them has finally hit for the very first time and on top of that I feel like I haven't pushed enough with the therapy they have received or done enough of the therapy I've learned so far with them during their limited waking hours. I feel like I'm failing them and no one else has the same sense of urgency or panic that I can't squash in myself. And this is just the tip of the iceberg.

Well, I guess I better get workin' on their fitness now.... only so many hours of awake time to do it!


Sara said...

I am sorry you are discouraged. Sending hugs and prayers your way :-)


Valerie said...

I'm sorry you guys had a rough day. I'm not looking forward to our evaluation in November. Just keep up the good work with your little guys and they will be OK.

3boys4tre said...

I am sorry that you feel so discouraged as you write this. My son (not a preemie) spent 90 days in the NICU and has had delays too and is three months behind, but when the boys hit those milestones YOU will be so EXCITED and you won't forget like some parents do. My prayers are with you and the beautiful boys!

pumpkinbug from the nest

Annie and Jason said...

Boo...I never realized we had to do NICU follow ups. I'm sorry it can be so tough! This is something I'm DEFINITELY not looking forward to! Hang in there - I think your boys look AWESOME!

Jennifer said...

omg mom, please look at the bright side. they may have work to do but they have come so far! focus on that. my son was very close to where your boys were at their age and he is doing amazingly well now at 19 months old.

Trish said...

Oh sweetie.. Don't beat yourself up. Look.. One of your boys just learned to breathe on his own.. I keep hearing how babies can do one thing at a time. They were so little and have really done amazingly well. THEY WILL GET THERE.
Robbie does EVERYTHING on his own timeline.. whether it was breathing on his own or waking up from anesthesia, he's on his own schedule.
Your boys are probably just the same way.
This is exactly why these programs exist.. to catch things early and help.
You're doing an incredible job.. you're a great mom and the boys are lucky to have you!

Corey and Steve said...

I've been watching your blog and really celebrated when your little guy finally got off the oxygen. My daughter (born in April at 27 weeks) is home on oxygen and I can totally relate to just about every concern and fear you described. I also have the same feelings of guilt and the "am I really doing enough?" anxieties. I think this just comes with the territory. You are doing an amazing job. Your boys are healthy and thriving as a direct result of the love and care you have been giving them all of these months. They WILL catch up. You are doing a great job Mommy. Hang in there!