"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

May 22, 2012

Neonatal Follow-up

I got a letter in the mail a couple weeks ago with a date and time already scheduled for baby Katea's neonatal follow-up.  I had heard about this follow-up when we were still in the NICU and was just waiting to be contacted to be a part of it.  What the neonatal follow-up is, is a bunch of nurses, doctors, nutritionists, NNP's, dieticians, developmental specialists, eye-doctors....and pretty much a doctor from every field who specializes specifically in neonatal care, or in other words, preemies.  It's pretty much a 4-6 hour appointment and in that time, baby Katea would get to meet with each one of these doctors individually.  Baby Katea will be part of this program until she's 4 years old and part of what they do is they will track her progress both health wise and developmentally to make sure she's as caught up as she should be.  They invite most all preemies to be a part of their program and they take the results they get and they update their statistics.

I was a little nervous taking her to this first appointment, because I wasn't sure what exactly it entailed....would she be poked and prauded again?  Would they need blood samples from her?  Would they have to dialate and do that invasive eye-exam on her?  Would I be ok with the results if it showed she's not where she should be at?  Everyone's been telling me from the beginning that she will be a little behind because she was born so early....but it's got to be hard for any parent to hear that their child is not developing quite as quickly as they should....whether they were born early or not.  I had a lot of questions, and worries and fears about becoming a part of this neonatal follow-up group, but I never doubted that I wanted to do it.

I had hoped that Ova would be able to come with me to the appointment, but his feet/ankles/knees/legs have been in extreme pain for the past little while, what was originally diagnosed as lupus a few years ago is now being second guessed and his doctor has referred us to a rheumatologist, thinking he might have rheumatoid arthritis.  That's a whole nother blog post, but I really hope we can figure out what is wrong with him because living at a 6-8 pain level all day everyday is not a good life.  I feel bad for him because he can't do a lot of things he wants to do, simply because he physically can't walk.  I get frustrated with it, but I can't imagine how he feels being in pain all the time and not able to do anything that he wants to.  :(   Anyways, he wasn't able to go with me to the appointment.  :(

I loaded my baby Katea, her oxygen, her monitor, blankets, medical history and insurance information into the stroller and we headed into the appointment.

I was actually pleasantly surprised with how smoothly everything went.  Right when we walked in, they checked us in...we didn't even have to wait.  Then they took us back to a bigger waiting room in the back where there were toys and books and things to keep kids entertained.  That would serve as the waiting room that all the parents waited in while between their rotations with the doctors.  There were a couple other families in there, some little babies like Katea and some older kids.  Some kids looked completely normal and you couldn't even tell they were a preemie, and others were super small.  There was this one little kid in there who was 13 months old who was walking around and talking to his mom....he was only 11 pounds, so small.  I felt extremely comfortable and emotional sitting in that waiting room with all those beautiful miracle kids, talking to the other parents and sharing stories.  We'd all been through the same heartache, trials, and triumphs....but yet our stories were all completely different.  It was nice to be around so many people that understand and don't question why the monitor beeps all the time, or why she needs oxygen.  Everyone knew. 

First the RN came and got us and just needed to check baby's vitals and stats.  That day she weighed 14lbs6oz.  Little fatty :)  She's still measuring 24 inches long.  They were super happy with how well she's growing.  I'm pretty happy too!  After she had written down all the information she needed she sent us back to the waiting room.  Next the dietician/nutritionist called us back.  She was a little concerned that she doesn't eat that much, yet she's gaining weight really good.  She only eats like 4-5 ounces every 4-5 hours and she sleeps through the night.  She was a little concerned that the amount was not enough, but she said they'd just keep an eye on it because at least she was growing and gaining weight.  A lot of preemies suffer from something called 'failure to thrive' which means they're not growing as well as we would like....Katea definitely does not have that problem.  She talked to us a little bit about what signs I need to look for to know when she's ready for solid foods, and gave me some other tips that might come in handy.  Once she was done with us, she sent us back to the waiting room.  Next was the developmental/occupational specialist....he took us to a huge room with lots of toys, a swing, and the floor was covered with those soft floor mats.  We went right into the room and got down on the floor.  I laid baby on her back and he just watched her movements and monitored her.  There were a few things she did that he really liked, like suck on her hands, follow objects with her eyes, move her head from one side to another....but there were a lot of things that he told me she needs to work on.  She's almost 8 months old, but her adjusted age is only almost 4 months.  Our goal is for her to act her adjusted age...and she was a little bit behind.  She should be interested in objects, grabbing her feet, lifting her head up when she's on her stomach....all things we need to work on.  Even though I didn't want to hear that, I already knew it.  The early intervention therapist that comes twice a month to work with baby Katea has already established that and it's something we're working on.  I know she'll catch up, she just needs time!  Once he was done with his evaluation, again we went back to the waiting room.  Because baby Katea is so young and this was the first appointment, she didn't have to see all the doctors in the office.  So after the developmental/occupational specialist, we only had to meet with one more person and then we were done.  The last appointment was with the neonatal NNP.  She just had some questions for me about her oxygen levels and checked her reflexes.  Actually I was happy to talk to her about it because baby Katea's actually been needing more oxygen lately, and I'm not sure why.  She's okay with the 1/8 liter during the day, but lately she's been desatting in her sleep so I've needed to turn her up to 1/4 or once 1/2 a liter.  Nothing else had changed, she was still her happy self...her appetite hadn't changed, she was sleeping the same amount as always...she just needed more oxygen.  The NNP asked if she was on any medications, and I told her the only thing beside the multivitamin that she's on is the albuterol.  Her pediatrician prescribed it for her because she still gets wheezy at times and sometimes she retracts when she breathes.  I'm just supposed to be giving her a couple puffs from her albuterol pump as needed.  Well, she's needed it 3-4 times every day.  It's amazing how well the albuterol works for her....within minutes of getting a puff, she clears up and her breathing shallows out.  The NNP was extremely concerned with the amount of albuterol she's still needing.  She told me that getting it too much could actually cause even more chronic lung disease....great one!  She referred us to a pulmonologist and told me that it was a rather urgent matter and that we needed to see one that same week.  She said most likely she'd be put on a permanent steriod, something that will help the inflamation in her lungs. 

After we met with the NNP, we were done....the whole appointment only took 4 hours.  She goes back when she's 12 months old and that appointment, they tell me will be longer because she has to meet with the psychologist and all the other doctors she didn't meet with this first time.  I'm grateful for these programs that help me track my baby girl's progress.  It was nice to not have to explain the whole adjusted age thing, and to have everyone on the same page.  And because they deal with this every single day, the delays they saw in baby Katea weren't made to be a big deal....because they're not.  They say that preemies usually get completely caught up at age 2, we have until then to help her get caught up...and I know she will!  :)

1 comment:

Melissa said...

So happy to hear that her appoitment went well. She is so sweet Monica! She is already 8 months old? Wow, where has the time gone. She is going to be just fine. Look at how much she has amazed everyone? She is has some more amazing things to do! No worries, don't doubt! You are so brave, you know that? Sure love and miss ya. You are right, we need to just meet up and get together no matter what. I will be back in Utah in July. Let's meet up then.