Sunday, September 23, 2012

Titus Update 9/23/12

Titus is 6 days old today! I can’t believe how fast time is flying by. Gestationally, Titus is 35 weeks 5 days.  Titus Jacob2 016He is progressing every day, which is a reason to celebrate, after spending 6 days in the NICU, Tim and I are both humbly aware that this isn’t always the case.

Yesterday (9/22) he was able to move from the isolette to a crib. Such an encouraging transition. As a parent, it just feels that we’re that much closer to going home, and it’s much less intimidating to work with him (changing diapers, his clothes, picking him up, etc.) now that he’s more accessible. Even though we knew he wasn’t sick, sometimes the isolette can make you feel like he’s sick. Titus Jacob2 003

Now that he’s transitioned to the crib, the big test is if he can keep his body temperature up on his own. He has been borderline, since he’s been moved usually around 37.6 C (97.8F), but thankfully he continues to put on his weight and eat at the same or better rate than before, which is still a good sign that his body is starting to get the hang of warming itself. Titus Jacob2 020

Eating/nippling his bottle (or the breast) continues to be his biggest (and only) real problem. The goal is to get him to nipple 80% of his feedings, at which time he gets to loose his feeding tube and goes to what they call his “ad lib” day. On ad lib day we feed more on-demand (than a strict 3 hour schedule) and see if he is able to eat an adequate amount and gain weight. Once he gets to ad lib day if all goes well it will be 24-48 hours, and he would get to come home. So far this has been his nippling percentages:

Day 1 (35 ml every 3 hours): 20%

Day 2 (35 ml): 23%

Day 3 (35 ml): 23%

Day 4 (40 ml): 21%

Day 5 (40 ml):  43%

Titus Jacob2 022The challenge is that as he puts on weight they increase his required intake, so sometimes it can feel like a circle of slight improvement, but then increasing his ml intake can bring the percentage back down…. The reality is, once he “gets it” developmentally, he’ll get it. The amount isn’t going to be seen as much as a hurdle as it is now. It’s a matter of his body learning the suck-swallow-breathe technique, it’s a developmental issue more than a “training” issue, so we wait. We wait for his brain to tell his body to feed itself.

I know I’ve already said it, but we are so very fortunate. He is truly a healthy, happy, very content baby that is doing great and developing as a typical preemie does. Titus Jacob2 010

Thank you all again for your prayers, meals, emails, comments and encouragement. God is faithful and He is giving us the grace we need moment by moment, which is all we ask for.   

Some days and some hours are easier than others. On one hand all I want is my baby to be home and my family to be united, on the other hand, I want my baby home when he is ready to be home, as things are now, we cannot take care of him the way he needs to be taken care of. Titus Jacob2 027

It’s hard not to try to rush things and to take things too emotionally when things don’t seem to be going our way, it’s a learning process, one I never thought I’d be learning. But here we are, learning and growing and walking the path that God has deemed as “good” for us. Regardless of how I feel, I believe Him and accept all He has for myself, Titus and our family.  Titus Jacob2 028

1 comment:

Ashley Skye said...

He is so handsome Amber. Thank you so much for the updates. He looks so little next to the bottle then I realize that is not a "normal" size bottle then I am like AHHH.

So sad I was not able to visit him this weekend but know i have MANY more oportunities to hold, hug and kiss on him.

Thank you for letting me come this weekend and hang out with your kids - it was great to spend time with your family

I love you all