A Good Weekend

Madeleine continues to recover from the infection that set her back last week and she is starting to get back to "normal." Kirsten and I had a great time with her this past weekend-- we held her for quite a while and played with her while she was in her crib. Additionally, we worked a lot with the trach as we begin to learn how to take care of the trach. I've had lots of questions about the trach when speaking with folks, so let me provide some further information:

- The trach was inserted to allow Madeleine to receive long-term ventilation support. Currently, Madeleine is on very low vent settings and she'll remain on these settings throughout the winter. Next Spring-- in April-- we will re-assess to determine if ventilatory support is necessary.
- There are two main reasons why Madeleine needs the support of the ventilator. First-- her lungs are very compromised by all of her infections and her general prematurity. By providing ventilator support, the lungs don't have to work as hard and can repair themselves easier. Additionally, since Madeleine will breathe easier while on a vent, she should gain weight faster as she won't burn as many calories.
- The trach was necessary because you cannot be intubated long-term. Long-term intubation is uncomfortable (try shoving a tube down your throat) and it is also more difficult to keep clear. The trach is just over 2 inches long so it is relatively easy to suction.
- The trach sits at the base of Madeleine's neck and has a short tube that extends into her airway. The trach itself is held in place by straps that velcro at the back of her neck. (Similar to a choker necklace.) The ventilator tube snaps onto the trach and is held in place by a tie-- we'll use a ribbon when we're home as it looks a little better.
- The most frequently asked question is: what if the trach or ventilator comes out or off? The asnwer is: it will come off/out and it isn't a big deal. Here's why: Madeleine, for the most part, is breathing on her own as the ventilator is just providing a little bit of support-- she's doing most of the work. I held her on Saturday when she was extremely active and the vent popped off a couple of times. I just had to pop it back on-- the nurse didn't even come over. We'll get better at tying the vent on but its not a big deal if the tube falls off. It is a little bigger deal if the trach itself comes out. Still, Madeleine can breathe through the hole where the trach inserts and you just need to insert a new trach back in. Kirsten and I are changing the trach today for the first time so that should be interesting.
- In terms of caring for the trach, its pretty straightforward. The trach itself is changed once/week. (Monday is trach change day.) They change it as gunk builds up on the trach and you don't want it to be obstructed or cause an infection. On a twice daily basis, we'll change the straps that hold the trach in place. This ensures that we keep the site clean and also watch out for any rubbing/wear on Madeleine's neck. Additionally, since Madeleine can't clear out the gunk on her own, a person must be near to suction Madeleine when she starts to cough. For this reason, we'll have nursing care at our house during the day when we're at work and at night so that we can sleep without worrying about Madeleine.
- Kirsten and I have come to realize that in the grand scheme of things, the trach isn't a big deal. From a cosmetic standpoint, it is pretty strange/intimidating but Madeleine doesn't seem to mind it and is actually very comfortable. (My parents have a ton of pictures that I'll post soon.) When you first see the trach-- as well as Madeleine's colostomy bag and associated cords, it can be intimidating but once you get past all of that, she's pretty comfortable and over time, all of these devices/cords will go away.

That's about it on the trach issues. As far as other updates, we're cautiously targeting next Monday for Madeleine's release from the hospital. We've spoken with the case manager and the list for discharge is fairly intimidating. Still, we think that Madeleine is stabilizing and if we're able to get everything in order and Madeleine can stay healthy, we'll have our daughter home next week. There are a lot of "ifs" involved with that scenario but things are trending in the right direction.

One final note: I've gotten lots of questions about her size. I haven't posted her weight much because its been fairly depressing. However, we were asked to bring in clothes over the weekend and Madeleine has definitely grown-- she's much longer now and is fitting comfortably into the 3-6 mos clothes. When she was admitted two months ago she was just starting to wear 0-3 mos. The difference is that while she's much longer, she's extremely skinny-- her legs don't come close to filling in even half of the openings. (The nurse on Saturday said, tough luck for your daughter-- I'd kill for someone to tell me my thighs were too skinny.)

Last night she was weighed at 8 lbs 2 oz-- not great but its a little heavier. Our goal is to get her back to the 1 oz/day that we've been targeting for a long time.

That's all for now-- I think that's enough. Thanks to everyone for your support. Take care,

Brent

PS-- Judy, we're thinking of you...