Hand to Hold's Official Blog: Written by Parents for Parents

NICU Graduate Clinic Follow Ups

When we left the hospital with Roxy, we were informed we would have an appointment card mailed to us with a date and time for her NICU Graduate Clinic checkup.  Roxy’s first checkup was in March of this year and I was a little scared of what to expect, but I really just knew that my baby was going to be fine and they wouldn’t find anything wrong.

At the appointment, all went well for a while.  We went through the usual weighing in and height check, head circumference, etc.  Most of the people we saw had treated Roxy during her stay in the NICU so they were telling us how great she looked and how big she had gotten.  However, my first “what” moment came when I was told that I needed to watch my preemie was eating so that she did not get too heavy (or “fluffy”).  I’m thinking, six months ago we wanted her to gain weight, thankfully for every ounce and now I’m not supposed to let her eat what she wants?

http://preemiebabies.wpengine.com/wp-content/uploads/2010/12/nicu_graduate1-325x325.jpgFast forward about a half-hour and two other doctors later.  We were discussing my preemie’s growth and the doctor looks up and says, “She had brain bleed, right?”  Um, not that I am aware of.  The doctor said that he thought she had and that they would want to do an MRI to make sure there was no long lasting scar tissue.  However, I had requested and received a complete copy of the medical records from my preemie’s stay at the NICU and that night I looked.  Sure enough, she had a Grade I brain bleed.  How could my baby have been diagnosed with a brain bleed and I not be told about it?  My husband seems to think that with everything that went on, I forgot about it or didn’t hear the doctor/nurse when they told me, but that just seems impossible to me.  Every time they told me a new term or condition, I went home and googled it to find out more about it and how it would affect my baby.  I still feel like it was never spoken in my presence.

The visit wound up being a lot like what I was told to expect by other preemie parents.  Expect to hear the worst and expect harping on the small things.  I do understand that they tend to look at the glass half empty as the neonatologist told me, but I came away feeling depressed rather than joyful at my preemie’s successful uphill climb.  Did anyone else feel that way?

We’ve been back to the NICU Graduate Clinic twice since that first visit and both were better than that first experience.  I haven’t been as depressed following these visits.  However, at our last visit (the 12 month checkup) just a week ago, the doctor again said that we needed to have an MRI of Roxy’s head because of the brain bleed.  She indicated that they didn’t feel there was anything wrong, but just want to “document” their file.  I’m supposed to give my baby a sleeping pill so that she can have an MRI done, not for a medical reason, but so that you can document your file?  I’m aggravated and upset with this.  If there is no reason to think there is a problem, why would we want to do this?  And then on the other hand, what if they do it and find something?

Personally, I will be glad when Roxy graduates the NICU Graduate Clinic.  Its a rollercoaster ride just like the NICU and I never know how to feel about it.  Does anyone else have these mixed up feelings about the NICU Grad Clinic?  Have any experiences with learning things about your child’s NICU stay after the stay is over?  What’s up with your NICU Grad Clinic visits?

Samantha Pridgen About Samantha Pridgen

Samantha (KY) is the mother of Roxy, a micropreemie turned preschool princess. Roxy was born at 29 weeks weighing only 1 pound, 9 ounces. Now a healthy 4-year-old, Roxy has no long-standing complications from prematurity. Samantha writes about her family as well as Roxy's early arrival and prematurity at Mommy to a Princess. You can also find Samantha on Twitter, Facebook, or email her at samanthap@mommytoaprincess.com.

Comments

  1. I had the worst experience at our 12-month check-up. My daughters had just turned 1 and we had to wait over an hour to be seen. When they took them in for the testing, they said that Lindsay had the vocabulary of a 4-month old and that Sophie was functioning at the level of an 8-month old. They also told me that they thought Lindsay had cerebral palsey because when they stood her up, she rose up on her toes!
    This was the day before Thanksgiving. I know my children and am educated enough that I told the people that they were wrong to base these conclusions on one 20-minute visit. However, I still was really upset. A few weeks ago, the clinic called and asked why we weren’t coming back. I told them how bad they had made me feel and how wrong they were. Presently, both girls are considered advanced in their vocabulary for 2-year olds. And Lindsay? No sign at all of cerebral palsey. She walks, runs, jumps, etc… It’s very sad how awful some of these clinics can make people feel. Perhaps if they changed their practice to making a few home visits before handing out these horrible assessments after 20-minutes, then this anxiety could all be avoided. And we would get more valid results.
    Hang in there and if you don’t want to go back then don’t. I know it’s not a requirement for my daughters and I feel blessed that I have a pediatrician who is more than capable of handling my girls’ development.

  2. I’ve never been too impressed with the follow up clinics either. They always make me feel angry. They tell me over and over again how I’m not feeding my kiddo enough and she’s not gaining weight. Well, she started at 450 grams/1 lb. What do they think she should weigh? And why would I add all this extra butter and oil into her foods when I wouldn’t even want to eat that stuff?! My kiddo is 4. Because of her size she’ll be followed for another year or so. I’ve come to learn that you take everything they say with a grain of salt. They don’t see your child as often as even your pediatrician does. They don’t know everything there is to know about your child. But there are helpful parts too. My kiddo has some speech/language delays and the follow up clinic has been very helpful to get her into the special ed preschool where she is excelling. That’s my 2 cents on it all. 🙂 Just take it with a grain of salt and use the portions of it you find helpful. 🙂

  3. Our NICU doesn’t have one (I don’t think)
    A Newborn Intensive Care Program nurse came to our home to evaluate Ashtyn on her mile stones a few times through out the first year and that was it. She is now two. Melany has has a NICP nurse come twice already. It is nice to have them come in home and do the follow up. I have never been to a clinic but I think I prefer it this way.
    After reading this I appreciate the program much more.
    http://www.azdhs.gov/phs/owch/hiriskper.htm

  4. We had a very positive experience, though to be fair we did not leave the NICU with many issues – just an enlarged kidney which is followed up on separately. At our first follow-up appointment, they did measurements first (all excellent, my 29 weeker is now a very big boy) and then a developmental check-up, which found that his skills were all at the adjusted age schedule and one was even at his actual age. The OT, nurses & doctor were all very proud and excited about our breastfeeding success and couldn’t stop talking about it. I am actually looking forward to our next appointment to see how my son has progressed. 🙂

  5. I am interested in the fact they wanted to do an MRI.
    My son had several brain bleeds. I thought I was told they couldn’t “grade” them because they weren’t the “usual” bleeds preemies get. (not in the normal areas of the brain) But on my last follow up they said they were Grade 4.
    They also confessed they had little hope for my son to not have some sort of mental issues.
    My son has been cleared by the neurologist and cleared on NICU follow ups. He has zero signs of problems.
    When we asked if they would do another MRI to see what things look like now. They said No…why look? Unless he shows signs, why look for trouble? So it’s interesting they want to look and mine don’t.

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