Friday, June 5, 2009

Ready To Come Home?

Same bat time, same bat channel...11:21!

First off, thank you all for your love, thoughts, intentions, prayers, visits, and messages. They have transformed this journey into one of hope...from Tragedy to Triumph.

I really gushed last night...don't have quite the energy tonight. Today was so busy. We walked into the NICU and there were 5 staff members and 2 reps from the bandage company waiting for us. We're there 2 minutes before we're asked if we're ready for Bella to come home today. Before we can answer, we are told there will be no nurses visiting to assist with wound care till Monday. about ...

NO WAY!?!?

She is still missing a large amount of skin on her feet and left knee. We're just not ready. We also need to come up with a car seat solution. Her car seat looks like it's made out of sandpaper. We haven't had time to figure out what clothes will work, and we need new bedding. 24 hours notice was just not enough to be prepared and not overwhelmed.

So...Monday is the day. It gives us 2 days to work with the attending nurse on perfecting wound care and have family and friends shop for necessities for home care.

Now, let me tell you about how prayer is driving this experience.

1) The reps from the dressing company sent us home with a week's worth of dressings for free.

2) That distributor isn't in our insurance network unfortunately. The in-network provider only carries 4 of the 6 products needed to dress Bella's wounds every day. Sooo, the case manager managed to convince CIGNA to change distributors so we don't have to order her supplies from 2 different companies. Insurance companies willing to serve their customers?

3) Bella's blisters on her face from yesterday...almost healed themselves OVERNIGHT. The same size blisters that formed in the first 2 days in her isolette are still healing. She is healing faster and faster from smaller and smaller blisters.

4) DEBRA ( national non-profit for EB patients and families ) has a dedicated EB nurse educator in Ohio who knows about Bella and is awaiting our call. DEBRA is sending us a welcome home basket full of supplies and resources!

5) I got my first referral for music therapy in the NICU today. A nurse came into our room during Bella's wound care to say a parent from the NICU pod where Bella started out called into the NICU this morning and asked for me to play for his daughter. I was happy to do so.

6) This may not be a prayer thing, but it was good. Bella's clinical nursing specialist, Beverly, said today that while this is only the 2nd EB baby she's seen in 8 YEARS, SHE APOLOGIZED for the slow learning curve of the nursing staff regarding Bella's care. It was really great for her to take responsibility for the reality that while this is a rare case, there were several things that could have been done to make Bella's care even better. She was a class act.

7) Lastly, I want you all to know about Daphne. She is a baby in the same pod (room of 9 beds) Bella was in. She was the most chronically agitated baby in the pod while we were in it. My heart went out to her. Her mom appears to be a young, single mom who we see waiting by herself at the end of each day for the city bus outside the hospital when we roll out in our comfy Toyota Sienna. Mom appears to only speak spanish, so I had never really connected with her, but I really wanted to try to calm Daphne while in there. Well, today, when I went in to play for Faith, my referral, Daphne was crying, clearly agitated, and mom was struggling to finish what looked like a diaper change. I decided today was the day, so I just slowly walked up to play, when I hear music coming from Daphne's crib! Mom had brought in a little wind up music device that played lullabies. Good for her, except it didn't appear to be helping. Right as I stopped playing so it would sound like chaos, the winder ran out and stopped. That was my cue. I started to improvise a gently lullaby about how much her mommy loved her and how everything was okay. Within about 3 minutes, Daphne was in mommy's arms, just staring peacefully at mommy. After 4 minutes, Daphne was asleep in mommy's arms.

Man, I was so grateful to finally get to connect with Daphne and her mom.

8) Oh, by the way...

...THERE WERE NO NEW BLISTERS ON BELLA TODAY! IT IS WORKING!!!!!!!! I can't even tell you the confidence in this miracle unfolding as I held and bottle fed Bella this afternoon. She felt stronger, bigger, healthier. We joked together (well, I joked with her as she slept while she was supposed to be eating). Things felt, well, normal.

9) Oh, p.p.s. Tomorrow night (Saturday) is Ali's POTTY PARTY! She is fully potty trained through the night with a 9 day dry streak currently intact....and...tonight is her first night in big girl underpants! YEAHHHHH!!!!!! You know what that means?

We'll have 2 WHOLE DAYS of diaper free living before diaper wearer 2.0 arrives on Monday! Cheers to another 3 years of diapers....but not till Monday, baby! WOOOHOOOOO!!!!!

Good times, good times.

Really, there is no bad today. It is really alllllllll good.

The request:

Please create this vision with me again. One day, Bella will be able to say, "Yeah, I had this rare skin condition when I was born, but when they brought me home from the hospital, it just went away."

Also, please pray for Bella's neighbors: Daphne, Faith, Elizabeth, and Jordan. Some of them will be in the NICU for many many weeks to come. Thank you for extending your love and generosity to them!

Oh, and don't forget go to to purchase "Bella's Song" at the bottom of the page.

Thank you all. We love you. Good night.

1 comment:

  1. From Care Pages Site:

    Posted Jun 8, 2009 10:10am
    by Ron Gray

    Beautiful message. I'm praying for Bella.

    Ron Gray
    Posted Jun 6, 2009 9:35pm
    by adrienne sandusky

    Angelique,Tim and Bella....thank you so much for Bella's update, and how wonderful it was that it was such a GOOD in disbelief.., Tim of the comforting effects your music has on your precious daughter and her "roomies"!! Your music is a gift from God....where comfort can't be obtained from the "normal" world of
    Drs. nurses, hospitals, peace and tranquility comes from your music. Anabella is in our prayers, as are both of you...!!

    With Love Adrienne and Lee Sandusky
    Posted Jun 6, 2009 4:35pm
    by Betty Kuo

    OMG!!! you guys are so super inspirational! did a blister form on her wrist from the pulse ox??? i keep wondering :) also, how did dressing changes go today??? thanks for sharing bella's carepage with me :) betty
    Posted Jun 6, 2009 3:32pm
    by Angela Ostermann

    We are so SO happy for the whole family! We think about and pray for you all every day!
    Posted Jun 6, 2009 12:31pm
    by Becky Stone

    Dear Angie and Tim, I am so glad Mike ran into Tim this morning and you shared your story. Reading your posts makes me cry and praise God all at the same time. Let's talk for sure, because, as Mike told you, I may be able to help you professionally. God's love and peace to you, the amazing peace that humans cannot comprehend (Philippians 4:7). Your neighbor Becky
    Posted Jun 6, 2009 10:49am
    by Marie Bresnahan

    I am so honored to be able to follow your story and the miracles attached to it. I am keeping you in my thoughts and prayers,

    Mimi B.
    Posted Jun 6, 2009 7:10am
    by MB Young

    Tks for the daily updates - we live for them. I read them en route to Mass each morning so I can bring them to our Lord, physically present. Remember NICU, as is medicine, is a world of trial and error. And that's very difficult to watch when they're playing with your sensitive baby. You're wise to be learning along with them. All they learn from Bella will help another baby who doesn't have the advantages Bella has. And choosing to bring her home when you're set will only save a trip back if you're not. We'll continue to ask our Lord to grant your request. We've also entrusted your request to the prayers of Dad & Good Saint Joseph - they've prayed for more 'miracles' in our lives than I can count! We're blessed to have such good family and friends who already stand before the Throne of God to speak to our Lord 'face to face'. You know they are!! Have fun at Ali's party. Good for you for remembering to celebrate all the good around you, too!