Developmental Evaluation

Isaac had his first developmental follow-up appointment today at the Neonatal Clinic. There was a few people at the appointment--a nurse, a developmental nurse, a physical therapist and the neonatologist. Basically they played with Isaac for 20-30 minutes and evaluated his development.

(They base the evaluation on his adjusted age of five months. Until he is 2-3 years old, they look to see if he is on par to where he would have been if he was born on time. )


They determined that he is a bit behind in his development. Not in everything, but definitely in his muscle tone and motor movement. They said he was where they would expect a 3 1/2 month old to be. He has had so many strikes against him with being born so early and then being so sick in the NICU with his CMV that his body just wasn't doing anything beyond fighting being small and sick for so long. I know he will catch up from that, but it may take a while longer than I hoped.

I think the hurdle in his development since he's been home is his reflux. We give him as much "floor time" as we can to strengthen his muscle tone, but whenever he's not upright, his reflux really acts up and then he won't eat all day. I know he hasn't been getting as much time as he needs to strengthen his muscles. It's so frustrating.

The good news is I think we finally found a good stride with his eating. Fortifying the breast milk just wasn't working. The formula really exacerbated his reflux. We finally got him on a super gentle formula, similar to the Progestimil he was in the NICU, but while it didn't worsen his reflux, he simply refused to eat it. He would take only about half of what he should be getting--basically enough until he wasn't hungry anymore. I tried for a week to make it work and our stubborn little guy won out this time. :) So--he's back on just breast milk and in the three weeks he's been on it, he's gained a whole pound. A POUND people! After two months at 11 pounds, he finally made it to 12 pounds. I couldn't be happier! On just the breast milk, his reflux is back under control and he is eating like a champ. It was a struggle to get him to eat over 80 mls, every three hours. Now he's taking 120-150 mls!


So now instead of focusing all my time and attention on getting him to eat, I can focus it on getting him strong.

Other than that, he is doing so fantastic. He's back to his goofy self. He's still a bit of an attention whore who will yell at us until we pay attention to him--then he'll flirt and laugh and talk like he's been storing it up for days (even though it's just been an hour or so).

He's sleeping well and on a pretty good schedule right now. He'll sleep from about 7pm to 7am with a sneak feeding at 11pm (we feed him without waking him up). He takes a two hour morning nap and a three hour afternoon nap.

One other good thing that came up in his evaluation is his head size. Apparently his noggin is huge. :) Which is a good thing. He's still at risk for some pretty serious neurological damage as a result of his prematurity and CMV. Having a big head, means he has a big brain. When the brain is healthy, any nourishment the body gets, goes to the brain first. It's a great sign for his mental development.

We love our little man so much. He's really put us through the ringer since coming home--but it's still so worth it. We are so happy he is home with us and that we get to raise such a special little man.

I HATE Reflux

There are days when I am completely blown over by how hard motherhood is. Days when I use nap/rest time to just cry at how overwhelmed I feel. In the midst of those days (today being one) I am still my children's biggest fan--but so at a loss as to how to hang on. I love my kids to the moon, so I can't stand it when I can't give them what they need. For Isaac--some peace and comfort. For Jonah--more quality Mama time that isn't interrupted by a screaming Isaac.

This hasn't been an angry day/week (but you can bet your buns I have had those), but instead a sad one. Isaac is really struggling right now, and as a result we are all struggling. Forget Mama, in our house the saying goes, "If Isaac ain't happy, ain't nobody happy."

It's just been never ending the last few weeks. His reflux is totally out of control. He refuses to eat and hasn't gained a stitch in a month. He just grumps and screams all day because he is miserable. I seem to be the only one who can get him to eat anything, and lately that is not much--even with all my cajoling tricks.

I'll spare you all the horrid details--it's not pretty. At first I was able to maintain my sense of humor. What's a little puke after all? The puke doesn't really bother me, and he actually doesn't do that often anymore. It's the screaming all day and refusing to eat that has brought me to my knees.

Many have offered to take Isaac for a while and I really want to accept that offer. But, I know that it wouldn't be at all relaxing for me. I would be distracted by wondering how much he was screaming and as a result how many ounces he lost and how long it would take to gain it back. He's eating every 1-2 hours right now, and the schedule he was on is now shot to hell. I wouldn't even know what to tell anyone who tried to watch him--"Um, well he WILL scream. Aannnddd...it could be for any reason at all--good luck figuring it out! And, he may puke on you." I don't think so.

Poor sweet boy. Poor sweet both my boys. Jonah has been such an angel through this, but he still needs his Mama. He's been very patient and I am heartbroken that after all of this--after the NICU, Isaac's early no sleeping months, moving--that Jonah STILL has to wait way to much and way too long for time with his Mom.

I know this will pass. I've been on the phone today seeing if we can get some things switched around to make Isaac more comfortable. Every day isn't so overwhelming, but I am reaching the end of my ability to cope.

(Sigh) I know that this is what it means to be a parent. It is these types of experiences that weld us so tightly to our children. These types of experiences, that when we look back we can say, "Yes, I have been through fire and hell for you. But I would do it again. And again. And again. Because you are just too darned cute and wonderful I can't seem to help myself. But boy watch out, because there's some serious payback coming your way when you get some muscles and I need some yard work done."

August 14, 2007

Oh Happy Day! Isaac had his pulmonary appointment today. The doctor gave the go ahead to take him off oxygen entirely. No more oxygen. Hopefully ever. Whoo Hoo! I got kind of emotional--I couldn't help it. I just can't believe we are finally here. Sometimes it gets hard to imagine life without all this extra stuff.

We're going on vacation in a couple of weeks and be still my heart we'll be doing it without oxygen, without a monitor, without leads, without masks. Wow.

Isaac's reflux is still acting up. He's still 11 lbs. Erghhh. Just grow dude. We'll get there. He can't stay 11 lbs. forever.

July 27, 2007

I decided to prop Isaac up in front of a mirror to see what he would do. The dude seriously couldn't get enough of himself--it was hilarious! All these photos are of Isaac in the mirror.

Isaac is the rock star champion baby of the world--and me--blissfully, lucky me--gets to nibble on these sweet cheeks every day. In a word--yum.

July 18, 2007

Isaac has finally broken the 10 lb. barrier (10 lbs 2 oz today)! My wager is that 9 1/2 of those lbs are in his cheeks. :) His growth has continued to be sporadic since coming home. It was that way all through the NICU and PICU, so I guess I shouldn't be surprised. It's just so frustrating to have him go so up and down. He'll go literally 2 weeks without gaining anything at all--and then pack on the ounces for a week. Right now he's going through a refusing to eat stage which is SOOOOO fun. It really stresses me out.

Later in life when he complains to me that he's the size of a hobbit--I'll just have to say, "Well dude--you should have eaten more!! And besides, hobbits are cute."

July 11, 2007

Drumroll please..... Isaac had his Pulmonary visit this past Friday and was given the green light to be taken off O2 during the day. Yahoooooooo! What this means really is that whenever he is awake, he can be tether-free (he still needs it to sleep). He is actually a pretty good napper and still sleeps much of the day, but it does give me a 1-2 hour block of time a couple times a day to go run errands or go play without the blasted O2 tank. Ahhhhh...

I didn't realize how cumbersome it really was until now. I feel so light and free. :) We made an excursion to Trader Joe's yesterday without the O2 and while we were walking around the store, I was thinking--"Hmm...something feels different..what is it? Oh! I know--everyone isn't STARING at us!"

Wherever we have gone for the last 2 months, we get stared at. I totally understand why--people are naturally drawn to little babies, and one with O2 draws more attention. However, I prefer to be invisible most of the time--especially when I'm dragging my two crazy kids around and usually looking less than my best.

It was so-oh-oh nice to be able to just go to the store. So fabulous. Plus Isaac looked so totally handsome without his tube and was positively flirting he was so happy to be without it.

He is hovering at just under 10 lbs and is still doing great. He's happier more often than not and is a great sleeper as long as he's in his bed :). Right now--I'll take it--at least he's sleeping. He loves Jonah and gets so excited when we talk to him and he wiggles and talks right back. He's even venturing out to give smiles to perfect strangers! Who is this kid? :)

We still have some bumps in the road--despite how awesome he is doing, he definitely has some special needs and requires more care and attention than a full-term baby would. We do our best to take it in stride though--it's easier when we focus on how well he's done since coming home. He clearly loves being with us.

All This Just To Breathe

Doesn't this thing look like R2-D2? I occurred to me that I haven't posted any pictures of Isaac's machines, etc. So for those who are interested, this is his "stuff".

Above is his large O2 tank--it lasts 1-2 weeks and has a 50 ft cord that we drag all over the house with Isaac. The other end of the cord is of course in his nose.



All of Isaac's meds that he gets twice a day. He hates them with a passion (some taste positively vile) but gets them mixed in with his milk twice a day anyway in a nasty orange brew of yuch. Mmm..Mmm..Good.





Isaac's inhaler and "spacer". On the right side is the inhaler that is connected to a chamber with a mask on the other end. He hates this as well, but I can't blame him--who wants a mask over their face 4 times a day with a nasty med getting sprayed in their face?




Isaac's apnea monitor. A cord connects the monitor to two sticky leads on his chest that monitor his heart rate and breathing while he sleeps. It goes a long way for peace of mind that he won't stop breathing--not so far in the interrupted sleep for the rest of us department.







Isaac's Nebulizer. This is a plugged in version of his inhaler, that distributes the same meds through a mask for about 15 minutes. It's supposed to be more effective than the spacer, but Isaac is just too squirmy. We haven't used this much yet.

(I forgot to take a picture of his portable O2--but there's that as well--it lasts 12 hours when full. We take that one out and about. )

June 13, 2007

Isaac is a "thrasher", so often we have to bundle him up so he doesn't freak himself out (or wake himself up) with all his enthusiasm. We usually bundle him up like this to sleep. It works wonders.








I was able to get a fleeting smile--He was smiling a lot, but would of course stop when I put the camera in his face.

Sleeping Buddy

Since Isaac is a "newborn", we have the slew of sleeping baby pictures for you.

I am the champion! (He's slept like this from the day he was born. Do all babies do this because I think it's hilarious)





















We'll do whatever is necessary to keep him upright (so his reflux doesn't act up)

May 29, 2007

So our sweetie little Isaac curently has some serious "roid rage". We had that cold scare last week so the MD put him on a five day course of steroids to help him breathe better. I'm embarrased at how long it took me to realize what his deal was (the same thing happened in the hospital). He has been so angry and I haven't been able to figure it out. (In my defense I'm not getting whole lot of sleep). Steroids to help breathe=good. Crazy raging infant=bad. I wish I was getting more sleep and could appreciate the hillarity of it. He basically has anger management issues and tries to be a little tyrant. The tiniest thing will set him off and he'll start raging. If you think about bulked up men (and women) on steroids and all the rage they carry around--that's Isaac right now. As Jaska put it yesterday, "Isaac and I are in a fight."

On another note--I have to say I am loving having an apnea monitor at home. When it goes off it is enough to wake the dead. It's like one of those foghorn things that cops use at parades. It is sooo bloomin' loud! Despite that, the benefits are far outweighing the annoyances. For one, it's peace of mind when he's sleeping. But the total unexpected bonus it that I can put him to sleep on his tummy without a single worry of SIDS. With his crazy reflux that is everything. It helps his reflux a lot and he sleeps pretty much like a rock. I'm going to ask if we can just hang on to the monitor even after he doesn't need the O2 anymore, so we can keep putting him on his belly until his reflux abates. They should send home one of these with every parent bringing home a baby.

On Second Thought...

After giving it some thought, I decided I wasn't ready to say goodbye to this blog. I guess I was thinking that it would be gratuitous to have this blog and our family blog once Isaac came home. In some ways that is true. But there are too many things I find myself wanting to say as I deal with the aftermath of all of this.

We're still dealing with our emotions on this one. A friend pointed out to me that people need to know what happens after a preemie comes home. I guess since Isaac has done so well for the most part, I didn't know how to approach that.

Our family has some baggage. I guess you can't go through something this traumatic and not. There are days when I just sob. Days when my heart is so light, I'm surprised my feet don't just lift up off the ground. Days when it takes every amount of energy and presence of mind I possess--just to get out of bed.

Since blogging seems to be my therapy of choice, there's been so many things I want to say and it just makes sense to say them here. Mostly though, I want to give anyone following our story updates on Isaac. I have come across people who have read this blog or recommended it to others based on a shared experience of having a preemie in their lives. I want them to know the rest of the story.

I will pull in a few posts from our family blog starting in May when Isaac came home and then continue from there as we feel the need to update.