Tuesday, July 15, 2008

You Can't Always Get What You Want

Parents of NICU babies generally don't like to see bright lights and lots of people in their baby's room. Excitement is generally bad. What you want most is darkness and the boredom of slow, steady progress.


Above: Activity and lights as the respiratory therapists and Madeline's nurse prepare to intubate her.

After a pretty good day yesterday, Madeline's vent tube needed to be removed today, and, rather than intubating her again, the doctor gave her another try on SiPAP. She lasted for over an hour, but her oxygen needs went up too high and she needed to go back on a vent. Maddy is getting stronger, and her vent settings are relatively low. With continued progress and a few good breaks, hopefully she'll get there soon, but it may be a while. We've learned to keep in mind that activity in the kids' room is not always a terrible thing, and positive steps forward often require trying out new care strategies. Some pan out, some don't and that's all part of the journey to September.

Take 2 on kangaroo care: It's been a while, but we were able to start holding Milo again yesterday. I got my shot today and Elaine is pictured below holding Milo yesterday.

Another shot of me with Milo. If you look closely, you can see Milo yanking out my chest hair. (Look at the lower left hand side of the picture.)

Elaine doing containment holding with Milo.

Elaine hanging out with Milo.

There's just no way to make medical devices look pleasant, so try and ignore the tubes. The important part is that Maddy is comfortable here and alert and getting a little chubbier.

The weird looking headgear thing on Maddy's mouth is called a Loagan's Bar (sp?), and I think we can agree that it looks pretty terrible on her. Nevertheless, it helps to keep her vent tube stable, and she can make anything look good (can't she?). The other less obtrusive stabilizer started to irritate her skin and it wasn't keeping the tube in very well.

Also notice that Maddy is sporting her new, bigger diapers in this picture. Although she had to miss a couple today due to the excitement, she's up to 11 ml. on her feedings. You can also see that the scar from her PDA surgery is healing well.

Elaine with Milo yesterday. He seems to do a little better with her than dad. I don't think he likes chest hair.

4 comments:

Laura, Jeff and Ella said...

Maddy looks adorable even with all those tubes! Both of them look great actually. One month is a wonderful milestone! We're thinking of you so much and wish we could be there - Can't wait for November!

Laura

richard said...

Hey Rob and Elaine... I love the updates and I am so happy that M&M are doing well... I'll give you a ring later this weekend and see about a visit maybe sometime next week...

- Rich

Sarah V said...

I can't believe how fat Maddy looks! She is like a different baby with a little belly and all. It must be maddening having to wait for her lungs to develop, but I am glad that you are keeping it in perspective and taking pleasure in each little (or big) step forward. The pictures are beautiful. Thanks for sharing! Wish we could be on a plane tomorrow for a visit, but...maybe soon.

Love,
Sarah

Helen said...

Elaine, you look like you are in Mama-bliss on that picture! I love it though am totally tearing up. Am so pleased you are able to hold Milo again. Maddy is just beautiful, weight gain suits her :)
Love
Helen xx