Tuesday, May 12, 2009

Can we handle any more surprises?

We arrived for our morning visit early. Grandma and Grandpa Mollenhauer were visiting from Iowa and we wanted to try to catch Dr. Clark with a few routine questions we had. I had just told Shannon that morning that I thought if Sara continued doing so well she may go home by the weekend. He looked at me like I was out of my mind. Well...

Beth Mittelberg, a friend from Northwoods, was the kids' nurse and the first words out of her mouth this morning was "if Sara continues at this pace, she will be going home this weekend." Remember how I wrote about the "rules" of having 4 bottles a day and if she took over 50% of all 4 for 2 consecutive days, then she would advance to 6 for 2 days minimum, then 8? Well, Sara made up her own rules. She had 1 day of 4 bottles. And then decided to jump to "just feed me a bottle at every meal, please." I just looked at Shannon and laughed. That started the whirlwind of the day.

You need to make an appointment to have a car bed installed and tested - when would you like to do that? She will be going home on a monitor so you will need training on that and they don't offer it on the weekend. You must complete a CPR class before she goes home so I will put you in touch with someone who can schedule that. Any family or friends who may be staying with her alone should also have CPR training. You have one more training video to watch. I will get you instructions on how to mix a batch of breast milk combined with fortifier so she will get increased calories. You need to keep her on a feeding schedule of every 3 hours due to her low weight, at least until she is eating 75-90mL per feeding. You will be able to breastfeed once a day to start until she gains more weight. We will make an appointment with a lactation consultant. We will need to schedule a follow up eye appointment. She will need a hearing test before she goes home. We have scheduled their follow up brain ultrasounds for Thursday. Have you chosen a pediatrician? If she is discharged over the weekend, her first appointment would probably be Monday. Dr. Clark will schedule for a home health nurse to visit you a few times a week to make sure everything is okay to start and make sure she is gaining weight properly. Would you like to give her a bath in a little tub this afternoon so you can get comfortable with that?

If your head is spinning by reading that list, you can imagine ours! Shannon and I sat across from each other at the dinner table tonight and he said to me, "we might have one of them home this weekend!"

Now keep in mind that all of this could change. She still has some things to cross off her list, too. As of right now it doesn't seem to be too much of a push for her to take all 8 bottles. But we need to make sure she can continue at that pace and not wear herself out. Or burn too many calories with her efforts that she doesn't continue to gain weight. We need to listen to what she wants and follow accordingly. The other major task is that she needs to lay in a car bed, with a home monitor attached to her, for 1 1/2 hrs and not set off the alarms by having a bradycardia. A car bed is like a car seat but she will travel in the car laying flat due to her low weight. Car seats have a minimum weight requirement of 5lbs and she weighed in today at 3lb 11oz. So we will get all of our tasks completed and let her continue at whatever pace is comfortable.

As for big brother Adam, we can't leave him out. Really, he has been doing fantastic by his own scale. For the first 5 weeks of his life, it was typical for him to have 5-11 bradycardias per day. We just got used to it. He would sleep well and forget to breathe. The past 4 days or so he has had 0-2 per day even with being off his canula. Good job, little man! He is just adorable to watch sleep - full of personality! While his PIC line remains in tact in case there are any tummy issues, so far things are looking good and he is up to his full feeding schedule of 32mL. His weight today was 4lb 5oz so we are seeing about a 2oz gain every 2 days from both kids. He is trying 2 bottles a day. Adam's biggest issue right now is with the reflux he experiences and we are trying to keep it under control with the Zantac he receives 3 times a day. We are hoping he won't be discharged too far behind sister but certainly want him to advance at a pace that is comfortable for him and won't cause any more set backs. They are already very unique in their personalities, that is for sure.

So I'm excited and nervous at the same time. It will mean change for our family again. Adjustment. A new routine and schedule to get used to. Certainly worth it. Nice to have one of them home. But part of me will ache to leave Adam behind. We'll get there.

For all of you who have prayed at some point in time for my children over the past number of weeks, my heart is full with gratitude for you. More at a later time when I might find words adequate enough to say more than thank you.

1 comment:

Pam said...