Sunday, June 22, 2008

A Good Weekend and Plan for the Week

Madeliene has continued her steady improvement over the weekend. Here are the quick stats:
- Weight: 2.58 kgs (5 lbs 11 oz.) We're finally seeing some significant weight gains each week.
- Feeding Volume: Madeleine is now getting 37 cc's ever 3 hours and there are no signs of dumping at this point. If all continues as planned, Madeleine will be at her projected full feed of 42 cc's by Tuesday.
- Breathing: For the past week, Madeliene has struggled with some breathing issues and the cause hasn't been clear. Over the weekend, the doctors decided to switch Madeleine to a high flow nasal canula with the added benefit that the air flow would be 100% humidified. The assumption was that Madeleine's nasal passage was congested and the additional humidity would help her out. With this in mind, the goal is to reduce the amount of oxygen that Madeleine is getting and she is very close to being back to room air. Over the next few days, we'll hope that she can remain on room air and the flow can be weaned.
- Bottle feeding: While Madeleine has had no digestion issues related to food, she is very inconsistent with bottle feeding. Some of these issues can be directly attributed to her breathing struggles and some is probably related to the fact that different nurses are feedig her each day. At this point, the doctors have agreed that Madeleine will likely be sent home with a feeding tube and we'll use the tube to supplement feeding with the goal of bottle feeding as much as possible.

In short, the path home is pretty clear. Our plan is:

1) Reach and tolerate full feeds by Tuesday. Once the doctors are convinced that dumping is unlikely, they'll remove her PIC line (IV). We're hoping the PIC line can be removed by this Friday, Jne 27th.
2) WEan breathing support. Its possible that we can bring Madeleine home on breathing support but we'd prefer that it isn't full-time. We'll monitor her breathing over the next few days and will report back what the plan is for her breathing.

That's about it. If we can get to full feeds and wean breathing support, the doctors hope to let us go sometime near the end of June. There are obviously a ton of challenges that we'll need to overcome this week but we're hopeful that we're close to getting home. Once we get her home, we'll still need to improve her bottle feeding and will also have to plan for her re-attachment surgery once she reaches 5 kgs (11 lbs). Nevertheless, we're hopeful that we're getting closer to getting her home. Thanks again for everyone's support.

Brent and Kirsten

2 comments:

Sarah Bushey said...

Guess we're both up late tonight!! Glad to hear that things are improving. Slow and steady wins the race...she's going to be home before you know it! It sounds like there is going to be a lot of work at the beginning when she comes home, but I keep hearing Kellie in my head talking about how RESEARCH shows that there is DRASTIC improvement once babies are with Mom and Dad only at home. Where there is not a different person feeding them and holding them and changing them every shift change - or more! That's pretty powerful, ya know? It's the home stretch, you two. Keep hanging on...

Praying hard for you three, as usual...

Lots of love,
Sarah

Anonymous said...

This comment is for Ms. Madeleine! Keep up the good work with your feeds and breathing and you will be home in your nursery very soon. You are going to love it there; especially having mommy and daddy by your side taking loving care of you. I can't wait to meet you little one. Your friend, Dee