Friday, July 24, 2009

One Day at Home

Baby has definitely eaten better at home than at the hospital, but only drank 10 oz total today. Not stellar. I hope her surgery team believes, as we do, that she will continue to improve better here in a familiar environment than at the hospital.

She had three very small bites of banana today too, as well as a dropper full of infant vitamin and some Tylenol. She's kept everything down.

In fact, everything is staying down and flushing out of her vigorously, and that bum rash we almost avoided in the hospital (she started turning red the day we left) has flourished with vim. She has racing stripes up her back. She screams every time she poops and every time we change her -- both of which happen every half hour. (For a family that has always recycled more than we throw away, our diaper consumption just skyrocketed. Before Bridgette was born, we had considered using cloth diapers. Now, despite polluting the earth with 40+ diapers a day, we're glad we chose disposable.) Bridgette is exhausted and should be in bed at this moment, but she's in Jeff's lap crying because she hurts so much.

One challenge is that her poop is still about as runny as water and acidic as... well, hydrochloric acid... and as we change her, she sprays almost continually. So, sometimes we go through three diapers a change just to try to get a clean one on her bum. This is also a challenge when it comes to creaming her. All of the help sites say the bum should be totally dry before applying diaper cream, so that we don't trap moisture under the barrier. Problem is? We can't seem to keep her dry. Ever. Not for 2 seconds straight.

I went shopping for supplies this morning (acidophilus, ear thermometer) and at both stores the pharmacists asked me questions which led to them asking for details which led to them requesting Bridgette's whole story. (I swear I didn't just start spouting, as tempting as that is.) Both pharmacists were really concerned and said they'd pray for her. (One even wants us to call back as she progresses.) I thought it was really sweet of them.

When I arrived home, I found Bridgette passed out in Jeff's lap, like so.

We also had a home nursing service bring us supplies for her PICC line. For those who don't know, a PICC line is a like a super-mega-i.v. The procedure to put it in requires full-anesthesia, at least for babies. They threaded a line up through a major vein in her arm and it ends directly in her heart. A piece of plastic connected to the line is actually stitched directly to her arm to keep the line stationary. So when meds or nutrition/lipids are pumped in, they get delivered straight to her right atrium. When we do blood draws, it also comes straight from the heart.

When Bridgette woke up this morning, I double-checked all the potential trouble signs concerning her PICC and found one. She was bleeding around the entry site. I immediately called the hospital, and when they found out it was only about the size of a dime, they weren't concerned. Still, I was really glad when the home nurse came and said the same thing. She unwrapped it (left the dressing on) and watched it the whole hour she was here. She thinks the wrapping was too tight, and I agreed. So we rewrapped it more loosely, and now baby can use her arm again too.

The nurse taught me how to clean the clave and flush the PICC line with saline and Heparin. I must admit, I feel more like a nurse every day.

The nurse also checked Bridgette's vitals. Her heart rate and blood pressure, which were always high at the hospital, are totally normal here. One more reason, in my book, to keep her home. We've continually monitored her temp (thank you brand-new ear thermometer), and it's been normal all day.

Here is Bridgette happily playing with her bottle of milk, and drinking none of it.


Anonymous said...

I am glad that she seems to be improving in most regards by being at home and I hope that the surgeons agree that home is the best place for her. While 10oz. is not much, it is better than yesterday, and perhaps tomorrow will be even better yet.

I also hope that you can find some solutions to the sore bottom. Maybe once she eats more, things will slow down and solidify a bit. We can hope, anyway.

We wish you the best tomorrow as decisions are made on the next steps in her care. Hope you can all get some sleep some, too.

We are always thinking of you and praying for you...all of you.

Love you,

Anonymous said...

P.S. I just realized, you spent July 24th, "Pioneer Day," being just that, pioneers - beginning this new life of yours, bagless and learning new skills. Congratulations! What better way to honor past pioneers than to emulate them?


Angela said...

I have enjoyed our ear thermometer too.
Glad she is drinking more and eating some. Maybe when all those things come out of her she will eat better.
Isabella fussed for about a week. She still does a little while she poops and then she tries to crawl away with diaper changes (on top of her changing table) But it is getting better. iLex has been the best for us. You can order it from the their website. I ordered mine from Sterling the place where I ordered her bags.

Anonymous said...

By the way, I thought you should know that I LOVE watching this video. I have watched it MANY times, and will probably continue to do so, many, many times. What a sweet, happy girl!