You Must Be This Tall To Ride

We are on the NICU roller coaster.

Wheee!!!!

Jackson does a little move I call the roller coaster when I am dressing him or moving him to the scale to weigh him before or after feeding.  He throws both of his arms up in the air and yawns like he is screaming with joy down a hill on a roller coaster.  It's pretty cute.  Then again, so is everything he does (with the exception of the toxic waste dumps we are finding in his britches, which is not his fault; the human growth formula they add to my milk is to blame for that).

Saturday morning I had a tough conversation with Jackson's nurse and one of his neonatologists.  I needed an honest assessment of when we may go home because I was growing tired of living on false hope.  I had been told a few times previously that we were looking at 7-10 days.  We were at day 7 (again!) and I did not feel like we were even close.  The doctor and nurse both agreed that it may take more time than we all anticipated and perhaps Jackson would not go home for another few weeks.  In reality, he is at the controls of this roller coaster and no one has any clear answer regarding when he is ready to stop this ride.  Perhaps his lung disease is worse than we initially thought.  Maybe he just does not have the stamina or will to feed by mouth consistently enough to get out of here anytime soon.  Is it possible he likes it in the NICU and does not want to go home?

I should point out again, we feel very lucky to have a thriving, healthy baby in the NICU.  There are many other people whose situations are so much worse than ours.  Our nurse pointed out that is precisely the reason why this situation is wearing us down.  We have a baby who has grown nearly 2 lbs. since he was born, feeds pretty regularly, and has no major health issues.  At this point we have a normal, healthy baby with the exception of a bunch of cords coming off of him and a need for a nearly negligible amount of oxygen support.  That makes it difficult for our brains to understand why we are still in here.

Sunday he had a pretty tough time feeding.  He was too worn out to do much and he seemed fussier than usual.  That day was so discouraging for me that Colin and I left after his 2 p.m. cares and feeding and floated the river for a while to regroup and relax.  When I say discouraging it does not mean I gave up.  I just felt sad and frustrated because it seemed like we were nowhere near going home.  In fact, it felt like the roller coaster was sliding back downhill and that I needed to start wrapping my head around spending a few more weeks in this room.  As strong as I have been trying to be, I was nearing the point of having a meltdown.

You know what they say about rock bottom......

Monday morning marked Jackson's 37th week of gestation.  Colin offered to come in early and take over the 8 a.m. and 11 a.m. shifts and feed him by bottle.  I refused on Sunday night and insisted that I needed to be there for him because he tends to feed well in the mornings.  Monday morning rolled around and the idea of relaxing at home for a few more hours was pretty appealing.  Of course, I had to get up and pump twice anyway so extra sleep was elusive, but snuggling in bed with Sam for a few more hours is just what I needed.  What a great husband and daddy.  I am a lucky girl to have Colin as my partner and teammate.

I got the text that Jackson had taken a whole bottle from Nighttime Sally at 5 a.m., plus partial bottles earlier on her shift.  Also, he had taken a whole bottle from daddy at 8 a.m.!  It was great news to wake up to.  When I got to the NICU at noon, he had taken ANOTHER whole bottle at 11 a.m. from daddy.  It was as if Jackson woke up and said, "Okay, I am technically a term baby now at 37 weeks.  Time to get with the program!"  Or perhaps he thought, "Mommy may have a meltdown if I don't start working on getting home, so I am going to start eating!"

He proceeded to eat nearly full feedings by mouth at 2 p.m. and 5 p.m. with me.  In all, out of 200 ml of food, Jackson at 185 ml by mouth.  We only had to gavage 15 ml in 12 hours.  That means he took 93% of his food on his own (if you can't do the math yourself).  Typically, when a baby is taking 75% or more of their food by mouth consistently, they pull the feeding tube.  At that point, the baby goes to ad lib feeding, meaning they eat on their own schedule.  They are given a total amount they have to consume in 12 hours (which is less than what they have to eat when on a 3 hour schedule with a feeding tube) and if they succeed, time to go home!

One day we are slowly clicking along up the hill, the next our arms are in the air and our stomaches are in our mouths.  Wheee!!!!!!

This is exactly what we were told would happen.  On more than one occasion, a sympathetic nurse has said, "One day Jackson will wake up and start to figure things out.  It happens fast and next thing you know you are going home."  The doctor was very encouraging on Monday when he found out how he was feeding.  He told us this is a very promising sign.  I am seriously done getting my hopes up and marking days on the calendar when he "should" be going home, but I certainly feel like I am in much better spirits considering this turn of events.

One thing that we needed to get done before we go home is an echocardiogram to diagnose what is causing, if anything, Jackson's faint heart murmur.  Since he started feeding so well all of the sudden, the echo was ordered and taken care of Tuesday morning.  The results came back "normal", meaning that his murmur is a quiet, common sound heard in many preemies and is nothing to worry about.  They won't even do a follow up and he is expected to grow out of it.  Check that off our list of things to worry about!!

Wheeeeeee!!!!!!

In all reality, I expect that this roller coaster may still have a few more twists, turns, and loops.  However, we are near the end of our ride and I hope it is mostly downhill from here.  There is a chance we may go home on oxygen, but at least we will be home.  Jackson is ready to meet his brothers, Dakota and Sam, and be with mommy and daddy 24 hours a day.  Of course, this all means we need to prepare ourselves for a ride on a new roller coaster.

The "OMG, what do we do now that we are on our own with a baby?" roller coaster.

Brrr....this gel is cold and making my gums chatter!