Wednesday, July 11, 2012

6 month NICU Developmental Clinic

We were told while at discharge to make this appointment as soon as possible b/c it fills up so quickly, so we have had this appointment planned for months.  I feel like I've stared at the appointment on our calendar forever!  Alas, the day has finally came and is almost gone.

My plan was to wake up early enough to not be late as I had plans to go to Starbucks and had to drop Noah off at my parents.  I feel getting both kids dressed and fed and getting somewhere before 9AM is pretty impossible, it doesn't help that sometimes Liam takes as long as 30 minutes to take a bottle.  I'm spoiled that Noah's preschool starts at 9:30.

As I pulled up to Childrens I saw the helicopter and I was flooded with anxiety...ugh.  When will the sight and sound of helicopters NOT bring me major anxiety? Anyway, we did make it right on time but I swear I walked all over Childrens Hospital trying to find this clinic.  I think I parked the furthest spot from the clinic, no lie.  And even at 9AM it's hot as heck here in New Orleans.

The waiting room was PACKED! I though oh great, we will be waiting forever.  However, we were called pretty quickly.  For whatever reason the administrative people at Childrens can NEVER pronounce Liam's name right.  "Limb?  Limb?  Lime?  Lamb? Lllll?" were the exact words the receptionist said today.  I about died laughing as the mispronunciations went on.  Liam isn't hard to say, is it?  I also don't think it's very uncommon.  Sheesh.

The first thing we did was get Liam's weight.  He weighed in at 11lbs 9oz which is what he was last week at the dietitian.  Then they tried to get a blood pressure reading on him which was quite impossible because he kept on looking up at me like "mom, really?" and wiggled so much that the machine wasn't able to register a reading.  The nurse then measured him and he measured up to 22 inches but he was 23 last week at the dietitian, so let's average the numbers to be a fair 22.50 inches.

And then we waited for a good bit and then 2 neonatology fellows came into the room.  One actually remembered Liam from when he was in the NICU.  They are switching over to a new system at Childrens and they couldn't find his discharge summary. But...don't fret, daddy to the rescue!  Seriously, Clint carries around a notebook and accordion folder of ALL of Liam's notes, letters, discharge papers, etc. so they were able to go and make a copy.  Awesome.

They then began an evaluation on Liam.  This part of our appointment was the longest and the most thorough.  They began by asking basic things like can he grasp things (yes), can he put pressure on his feet (yes),  can he track things (yes) and other questions of the like.  They asked if he is verbal with sounds and Clint made a comment that he felt that Liam has become less vocal in the past few weeks and right then Liam began cooing, it's like he was saying "Not true! Listen to me!", we all got a good chuckle from that.  The fellows both agreed that in addition to the services Liam was already receiving that he would benefit from adding a physical therapist to his schedule. 

The next person who met with us was a Psychologist.  She had a booklet and began asking us questions and started scoring Liam based on his interaction and our answers.  She gave Liam items like blocks, bells, hoops and watched how he interacted with them.  She was amazed that he was only 15oz at birth and that he is doing well for his adjusted age of 6 months.  She also noted that adding PT would help him.

Once she left we waited for quite a while to meet with the Neurologist.  The Neurologist came in with the fellows and it looked like maybe a resident and a med student.  He quickly went over what we already spoke about with the fellows and agreed that he needed PT and wrote a script for him to receive PT at Childrens.  I also made a call to Early Steps to let them know that we needed to add PT to his plan.

So for a summary: a unanimous response was that he is still small so he needs to catch up with his weight gain, that he needs PT and that he is doing what most 6 month olds are doing.  I was very pleased to hear that he is doing well in their eyes but that he still needs to be doing more and "catching up" at a possible faster pace.  They say most preemies are caught up by age 1 but if not they  need to be caught up by 2.  We follow up with the clinic again in 6 months.  I left feeling happy and at ease.

Once we left the clinic we headed down to give the script to PT.  Well, there is a waiting list so I have NO idea when he will be receiving the services that all the docs says he needs. Ugh.  I guess if I don't hear back in 2 weeks, I'll give them a buzz.

Sunday, July 1, 2012

Article on PTSD for NICU parents

I follow the Grahams Foundation on Facebook.  They post some really great tips via status updates and their blog.  This past week they passed along an article that the New York Times posted.  You can find the article here.

I haven't talked much about my mental state since everything has happened with Liam.  This article really touched close to home and made me realize that I am not alone.  Being a micropreemie mom is such a roller coaster that extends past the discharge date in the NICU. 

I think my favorite quote out of the article is this:  “It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore,” Dr. Holditch-Davis said.

That is so true in my situation.  I feel that now that I'm ready to finally talk about what happened and now it's not on anyone's radar but mine.  What most people see is that Liam is growing and thriving and he is but I'm now able to process my thoughts of those 101 days.  I've found a support system with other micropreemie moms locally and a few that I've met online, so I'm very grateful for that.

If you have a second, please check out the article.  It gives a great insight on what I have I'm going through.