Sunday, April 18, 2010

One Month Old...One Week Home...Warmly Welcomed by Friends and Neighbors

Gwyneth is home, safe and sound. I am in awe of her, she is in "normal baby-mode " - she never lets on about her past struggle. She sleeps a lot...which I assume is normal based on all she went through in her first several weeks of life. She is a bit fussy when she is awake, and honestly, it makes me worry sometimes. For now, I assume it is just "gut" issues, that her fussiness is because she doesn't' feel good in her tummy, which is normal for newborns, right? Her pediatrician will see her again on Monday. On the 29th she has a cardiologist appointment at
UVA. So, at least I can ask the doctors what they think. I'm going to check into giving her some probiotics as she was on a antibiotic soon after birth.

Lillian's happiness upon arriving home impressed upon us all. I felt both so glad for Lillian and sad at the same time. I was thrilled to see her delight so much upon returning home but realized also, just how hard the whole ordeal was for a two-year-old to process and cope through. She did so well in Philly, that really, until we walked in our front door, I wouldn't have known just how deeply the whole situation affected Lillian. It was around 11:30 at night and she ran from room to room with her eyes beaming and taking it all in. She exclaimed as she jumped up and down, "we drove all that way and now, hurray we're HOME!" - This excitement carried through 'till the next morning when she told Grammy as she looked out the front window, "there's our car and there's our street!" Later in the week week, Papa gave Gwen a special gift, a beautiful framed print of Philadelphia. We showed it to Lillian and she looked at it and then hugged her arms around herself and said "I'm so glad I'm home."

We were welcomed by a wonderful neighbors and good friends who played the role of quiet house elves and readied and warmed our house with food, flowers and a mowed lawn and more...THANK YOU for the amazing welcome - Sharon, Zeke, Jessie, Elisa, and Ann!!!

Meals are being brought to us by our good friends every other day. Gwen is getting gifts in the mail (thank you Lauren!) and today we are enjoying an "edible arrangement" - so YUMMY! (Thanks Debbie!).

Myers returned to work this week - I'm spoiled because my mother is here, so the transition to being a stay-at-home mom of two is eased. With my mom here I've been able to unpack and move back into our house (thank you Dad for driving our stuff and mom down from Philly- Lil enjoyed having you here for a few days as we got settled). My mom and I have enjoyed the extra warm spell by walking downtown with Lil and Gwen two days this week. The week has flown by as "normal life" takes over and all of Gwenyth's early days fade so fast into memory - it is hard to believe - it as if we stepped out of a dream and it all disappeared behind us.

I still read up on and think about the babies and other children at CHOP everyday, but it takes a moment for my brain to acknowledge that what I'm thinking about is REAL, that at the same moment I'm sitting in my comfortable sunny dining room typing, a world of beeps and hard-working nurses and bright florescent lights plastic-sided baby beds exists in the same moment that I am existing in - that it did not fade as our own experience turned into a memory. It is a world where night and day are a blur and if you know what day it is you are probably not a parent but maybe a doctor or more likely just a visitor from that strange, care-free, simple and foreign world outside the windows.

I have survivors guilt - even as I know Gwenyth is still being watched closely by doctors and is not that far from her own battle of survival - even as I know we'll have to exist there again as Gwyneth's journey will lead her there again - and we have no way of knowing when or what or how it will all play out. Even knowing all that, I still feel some strange guilt that we got out fairly fast, pretty unscathed and are safe and sound at home. Combined with the "guilt" is the unsettled feeling that perhaps we only think we are home-free - that something will arise in the days and weeks ahead...

I've come to find that having a "Heart Baby" is like watching the weather and having a dire fear of the rain - you want to hold it off at all costs. At the hospital the climate it is more tumultuous, the weather patterns are tricky and unpredictable. Fair weather days are deceiving and are greeted with such trepidation and caution, you are afraid to step out and really soak in the sun...because you might get too comfortable and feel much more the effect of the cold when it snaps. Even if the doctors assure you the sky is clear and as blue as can be, you still believe they see clouds they aren't telling you about and you search for any clues their words or demeanor may let slip.

At home, the "climate" is a bit more placid. However, you are still tentative and always watching for threatening clouds on the horizon. They usually blow over, sometimes are just mirages but I do sometimes look at her breathing and think that it doesn't look right - I feel the dark cloud creeping over and don't want to look up - I think "oh no, something is changing with her healing heart, it's going in the wrong direction now...and she is on a path back to the hospital..."

But, I can only walk forward in faith and look back in awe and soak in the overwhelming thankfulness I feel for how blessed we are, here, now, home with two amazing little girls. I will pray for those babies still working towards their day when they leave for home and I will keep asking for everyone I know, please remember them as you did Gwen.

How can we be more blessed - friends and neighbors who are truly, really, "there for us" and two little girls to bring sunshine into our world every day?


  1. Thanks for the update. It was fun to hear Gwen making noises in the background today as I talked to Myers on the phone. I hope the doctor visits coming up are all good news. I think of you all often. I love you.

    Aunt Sarah

  2. Weeping through this! I'm so thankful you are home and comfortable. I still think about you every day, and we always pray for Baby Gwen in the mornings. Praying you will see more and more sunshine and less of those dark clouds... love to all of you!

  3. Poor baby Lillian! I didn't know she missed home so badly. I'm so glad she's home and Gwen is being so good to you!

  4. You are such an amazing writer. I am so glad you and Gwen and your whole family are settling into a more normal routine. I can't wait until we do the same with Jacob. This is no life for a baby. I dream of the day when we are free from needles and wires, hopefully it will be here soon. I will continue to pray for Gwen and I am so glad we were able to meet you guys. Hopefully one day we can get together and watch our heart babies as they are playing and don't have a care in the world. Take care, so happy for you!

  5. Hey guys!

    It's so good to hear that Gwenyth is doing so well at home. I hope it hasn't been too hard to adjust with a newborn and a 2 year old. My day is coming soon when the two are home with me all day. I guess as everyone says "you just need a routine down and you'll be fine". Easy for them to say, right? lol. I'm extremely nervous to bring Luke home. We think about you guys daily and continue to keep Gwen and the family in our thoughts and prayers. You both are truly amazing people and parents and we are so happy to have met you.

    Sending our love,
    Erica, Tim, Gianna, and Luke Benamara

  6. Beautifully written :) We're so glad to have you guys back!

  7. We really appreciate your writing. I'll bet it takes some strength and courage to publish sometimes, but it helps us know how to pray, and it helps us be with you in your struggle. Cheering for Gwen and her family! Dave & Beth Nealon & family


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