Monday, June 8, 2009

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, 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?


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 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 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.


  1. From Care Pages Site:

    Posted Jun 10, 2009 9:03pm
    by Linda Short

    Dear Tim & Angie,

    We send our love and greetings from Cape Cod. We are glad you are home, and have appreciated your daily updates. You continue to be in our prayers, and we look forward to seeing you next week!


    Rev. Dennis & Linda Short
    Posted Jun 10, 2009 1:40pm
    by Amy Andrews

    Thinking of you! So glad you can rest in your peace space. Thank you for keeping everyone informed.
    Sending love from SD
    Posted Jun 9, 2009 10:34pm
    by Lacy Jane Vanderboom

    Welcome home family!!
    My parents added you to their prayer group at church and tried to log on to this page to wish you their best...but could not loacte it...
    No worries as the enegry is their for Bella and the entire family!
    I cannot wait to be invited to see her resting in her Home!!! I love saying that and it puts a huge grin on my face.
    Love with all our heart!!!!
    Posted Jun 9, 2009 7:33pm
    by Erica Thomas

    Yeah you're home! May God continue to heal Bella and bless your family.

    Jay & Erica Thomas
    Posted Jun 9, 2009 4:14pm
    by Betty Kuo

    i missed you guys today! how is bella :) jenn the wound care distributor or manufacturer emailed me too and was asking about bella :) we have both read your blog! please keep in touch! -betty
    Posted Jun 9, 2009 3:48pm
    by Richard Kelly

    "two of the teams wanted to "pumice the skin" or attach super sticky leads all over Bella's body. Nope. Not on my watch."

    Good job, Dad!

    This is frustrating. Can't they put a sign on the isolette explaining the situation?
    Posted Jun 9, 2009 3:38pm
    by Joan-Marie Bresnahan

    Dear Tim at al,
    Prayers are following you home with your precious little girl. The intention for Bella's healing has been entered into the book of intentions at St. Patrick Church so now many more people are including their prayers for you, Angelique, Ali and Bella.

    Thanks for the updates. I've just gotten my phone and internet service back and I accessed your updates first.

    Love to all,
    Joan-Marie Bresnahan
    Posted Jun 9, 2009 2:44pm
    by vicki hurst

    Thinking of you all and happy you are home maybe you can all work on healing now. Deep breathing works wonders on overload! I am praying on your original idea that now that Bella is home this EB fades away.
    Posted Jun 9, 2009 1:54pm
    by leslie richardson

    sooooooooooooooooo happy to hear that you all are doing well! I wish and pray nothing but the best for your family as you take on chapter two of this journey... love and prayers from Missouri

    Leslie and Jason
    Posted Jun 9, 2009 11:55am
    by Trazona Montague

    I am so glad that Bella is home. I am sure the staff at the hospital was great and you couldn't have made it this far without them, but it's nothing like having your little girl home in your care 24/7. Good luck and Good Bless.

    Posted Jun 9, 2009 11:08am
    by Tracy Seem

    Hi guys,

    I finally have my computer back, so we were so happy to be able to log on to this wonderful site for all the lovely photos and good news.

    As exhausted as you must be, it has to be great to be home!!

    Good luck finding your pace and settling in. Congratulations on being home!!! hugs and kisses to your two gorgeous girls.

    Lots of love,
    Tracy Jon and the boys

  2. More From Care Pages:

    Posted Jun 9, 2009 10:12am
    by Kelli Kelly

    Thank God you're home as a family. At least you're able to start a new chapter. Our prayers are still with you all.
    Kelli and Richard
    Posted Jun 9, 2009 10:07am
    by Denise Dew

    Ang and Tim, the last couple of times I've sent you prayers because my heart felt that was what you needed instead any other word of encouragement I could offer on my own. Then on Sunday evening, out of the blue, I was cleaning my dinner dishes [I rent a room in a house near UCI Hosopital] at the sink and I started thinking about that lasangna dish Angie made when my husband was dying and how much love went into her dish. And I thought it would be nice for me to do the sanme for her. I remember her telling me later that it was all she could think to do as it was all she knew she could make. Well I got to thinking what was my way of returning something as wonderful to you two when you need so much and what I can offer is only prayers. But then I thought about it! I too have food dishes that I love to make for people as well. With summer only a few short days away I'd like to offer you a Dew Family treat-RIBS!!! I'm good but my son Aaron is his dad's protege'. So what I'd like to do is within the next couple of weeks [give you two time to get yourselves into a routine with your new life at home], me and my son are going to have a family get together where we will be having a mom v.s. son barbecue cook off. I would like you to be and Ang to be judge's and benefactors of our family challenge.
    Otherwise, until then God keep you both, continue to grow you strong and NOTHING that goes on is MISSED by Him! So you are protected.
    Posted Jun 9, 2009 9:44am
    by Barbara Dailey

    Our hearts go out toyou and toyour little family - once again united at home. Thank you God - we continue to pray and to follow your journey knowing that you have difficult times ahead and knowing that you will be given the strength didgnity and grace to handle it with the support love and help from your church family - love to you all - Walt and Barb
    Posted Jun 9, 2009 9:29am
    by Marie Bresnahan

    I am so happy for you that you have your baby girl home. I know it won't be easy but I'd say, if anyone is up to teh challenge -- you are!!


    p.. Send my love to your mom for me!
    Posted Jun 9, 2009 8:38am
    by terri wiener

    Love, Terri
    Posted Jun 9, 2009 8:26am
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    Welcome home!
    Michael & Robin Setto