Settling Into a Routine

Kirsten and I are slowly and happily adjusting to life with our 6 pounder at home. I'm working hard to get into work, get stuff done, and get home in a timely fashion. Kirsten is learning how to juggle Madeleine's doctor appointments with feeding, cleaning, and all of the other tasks associated with being a mom with a child at home.

As far as medical benchmarks are concerned, I've laid out the following goals: (as with all goals, these will be adjusted by doctors and will be delayed if Madeleine gets an infection/setback)

1) Gain weight: This is the most important factor as Madeleine has some ground to make up. Our goal is 1 ounce/day.

2) Resolve breathing issues/remove oxygen: The goal is to get rid of all breathing support by the end of August.

3) Bottle Feed: Madeleine does well at times but struggles to finish full bottles due to problems with reflux. In the short term, this may not improve much for two reasons. First, we're not giving her the best drub for reflux (reglan) as it inhibits weight gain. The second problem is that we're practically force feeding Madeleine every three hours with mega-calorie formula. This formula takes longer to process and therefore, Madeleine is going to have some back up issues as we continue to force it into her. Eventually, once gaining weight isn't so important, we'll likely back off and let her body tell us when she's hungry. This should help resolve the reflux. Realizing that this isn't going to happen any time soon, our goal is to get rid of the feeding tube by September 29.

If all goes according to plan, we'll have all of her medical issues resolved by the end of September and will be ready for the final re-attachment surgery in mid-October. All the while, we'll be pushing her to improve her muscle tone as this is a key issue with kids with Downs. Yup, Coach Bushey is already putting Madeleine through daily exercises.

While we're focused on all of the medical issues/challenges Kirsten and I are also just excited to have fun with Madeleine. Its a delicate balance as we want her to grow and develop appropriately and we know that there are certain things we can do to help this development. At the same time, we sometimes just like propping her between us on the couch and playing with her, or letting her sleep on our chest, or letting her sleep in her swing while we sit and watch... You get the picture.

All in all, we're learning to balance life, Madeleine's medical/development challenges while also just having fun being new parents. It can be a struggle at times but its also pretty cool and we couldn't be happier.

That's all-- hope things are going well for you.

Brent