First 24 Hours at Home

First 24 hours at home...done...still a roller coaster, but with moments of almost normal serenity!

Our in home nurse was great today. Turns out she'll be our nurse all week, and if not, only one more nurse will come by. I thought it would be like the NICU where Bella saw a different nurse every day.

Today was nice at times to be so peaceful, but Bella beat herself up pretty good with her own two fists today and her face has taken a beating. We also found out from the EB nurse educator that reflux is common in EB, so we installed a 2" elevation for Bella's head in her cradle to hopefully help with that. She just seems to have two main states...sleeping and crying. Normal right, but the crying is like turning purple screaming and almost inconsolable. Ali wasn't like that so it wore Ang and I out. Also the nurse had to leave to go to her other job in the middle of the wound care. Ang and I thought we could do the right leg and hands by ourselves, but you just need 6 hands to manage it and it took us pretty close to 2 hours to finish up. THANK GOD Nanny and Manny stuck around this afternoon; they helped care for Ali wonderfully during our first in home wound care session.

Gang, we thank you all for the continued prayer and support. We are pretty worn out right now, and really are carried by you.

Tomorrow: the first trip out to the pediatrician. She's already due for her 2 week check up...never mind the fits 12 days were in a hospital. Please pray that Bella tolerates the checkup well.

Please hold with me this vision again:

"One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away."

All things are possible through God.

Good night, keep the posts coming. Your messages keep us going.

We love you all.

We Made It. We're Home.

We made it. We're home.

One Chapter ends, another begins.

First of all, where do we put all the crap we came home with???

The house was already splitting at the seams...wow, wound care stuff...and there are literally BOXES of supplies en route from Indiana for dressing changes for Bella's limbs. Whew. Lots more to figure out!

Bella and Ang are asleep on the couch downstairs, and it would make a great pic if I could just get out of bed myself. Till today, I have overused or misused the word EXHAUSTION. Let me briefly recap the absolute drama of the day...

It all started when we thought that we had to be at the hospital at 8am this morning to meet Betty, Bella's Physical Therapist, to do the dressing changes on Bella's wounds. Thank GOD Ang's mom could be at our house at 7 this morning to help get Ali off to daycare. When we arrived, Betty informed us that Tara and Jen, our wound care reps, were coming out again to see what else we need and brainstorm one last time, but that they weren't coming till 10:30. Ang's & my mind immediately calculate the wasted 2.5 hours of sleep and growl under our breath.

I had my first anxiety attack this morning about 30 minutes into the shift. I couldn't catch my breath, was nauseous, and dizzy. I've never felt that way before. It was extremely frightening and uncomfortable. Luckily, I had the presence of mind to practice what I preach tom my patients and spent about 5 minutes doing DEEP breathing and it finally passed. We had so much to accomplish at the hospital, then we were coming home, and WHO KNOWS how that's gonna go. It just began to crush me form all sides.

HOWEVER, Betty rescued me with another breakthrough with Bella's wound care. Bella was asleep in my arms and Betty asked if we wanted to change the dressings while she slept in my arms...hmmmm...never crossed our minds that we could do that. Long story short, Betty did the hands and right leg in 30 minutes. Once the reps came, we designed a new strategy using a new product on the left leg. 30 minutes.

3.5 hours
2 hours
1 hour

We're figuring this whole thing out a little more with each day. The wound care reps COULDN'T have been nicer and more accommodating. We feel really well taken care of by them.

So, home health nurse was lined up by 8:30, wound care is happening early...discharge should be easy...right?

Wrong.

One of the neonatologists comes in to talk about yesterday's episode. I reiterate exactly what happened, and he felt he would be remiss if he let us leave without doing an EEG and EKG just so if something was going on, we wouldn't be doing a u-turn. Cool. We feel the same way, EXCEPT the results of the tests may not come in till TOMORROW...a la there's a good chance you're not going anywhere today. Our nurse yesterday prepared us for the possibility of a hurdle so I wasn't too surprised. Really, we were more concerned that whatever Bella was ding was alarming the people in the know...and that's always a drag.

So, we leave for lunch and return to have Bella dressed and sleeping in her car seat...one of the things left to do...carseat test. Okay. Check. So, Ang and I work in the waiting room setting up outpatient visits, talking to our insurance provider, who has been STELLAR to date, etc. As we are working away, suddenly I get this powerful sensation that my baby is at risk and I need to get back to her room. I explain to Ang I'll be right back.

I walk in to a scene out of a movie. A cameraman has two video cameras on tripods with various other gear set up right across from Bella's door. The EEG Team has also pulled up with their mobile cart. There are a handful of Doctors, some I recognize, some I don't standing around. It is chaos. Then, hearing test people show up, and while EEG team is there, EKG team shows up as well. I start dealing on people telling them who can do their tests and who can't and in what order...two of the teams wanted to "pumice the skin" or attach super sticky leads all over Bella's body. Nope. Not on my watch.

I was so grateful I had been listening again...call it intuition, gut, guardian angel, whatever. We were 2 for 2 with reaching out to my neighbor and keeping the techs away from Bella!

Anyhow, EEG came back normal as did EKG. Green light. Go home!

Bless the grandmas; they had been working all day to get the house ready with dinner on the table even!

We got home, tired, hungry, and exhausted by the 40 things that were done or attempted to be done to Bella. We had a wonderful meal with grandma (Ang's mom), Nanny (my mom) and Manny (my step-dad).

It is so peaceful here.

Part of me is sad to leave the NICU since it is where I want to work. The conversations I had with nursing and Doctors over the past 12 days has been really exciting, but having Bella at home recovering feels so good. I'll be back in a NICU soon enough. Now it's time to hunker down in the nest and get down to some serious healing.

Part of me also hopes you'll continue to come back to the site. I had this fear that once you saw Bella came home, you'd think," Yay! Glad that's over with!" To some extent that statement is true, but Bella's journey is far from over. We have some seriously big wounds to heal, as well as CAUSE the prevention of any new ones through proper, tender care, and the power of prayer and intention. When so many people put their mind and heart into one outcome, God, the Universe, the collective unconscious (again, whatever label works) responds.

What you all HAVE to know is that since the building of this page, Bella has had no new giant blisters like she developed in the first day-3 days. New blisters have been small in size, fewer and farther between, and have often healed themselves completely in the matter of 24-48 hours.

Thank you for all of your prayers, messages, thoughts, emails, and to those local who helped out in various ways THANK YOU. This wouldn't have turned around so fast if it weren't for you.

it's now 3:22 and Bella just went down for some serious ZZZ's and now so shall I.

Good night, and God bless all of you.