Thursday, April 29, 2010

Good News from UVA - Go Gwen, Go!

Gwen amazed her docs at UVA today - they were impressed! She is 7 lbs 9 oz, oxygen levels 99% and blood pressure is good - the docs said, "she is doing very well considering all she has been through - she is amazing" The valves are both a little leaky, the pulmonary more than the aortic, but apparently it is within an acceptable amount for now. They are watching for arrhythmia issues and some narrowing of the pulmonary arteries that are part of her condition and may improve as she grows.

Three more weeks till her next ekg and echo. May it be a long, long time until a next surgery is called for - pray for two- three- as many years as possible before she needs replacements.

Back to the busy world of a two year old adjusting to having a new baby sister and a new baby sister adjusting to being a newborn in the big, big world....

Please pray for Jacob, Haley, Luke, Anthony, Mia, Zoe, and Jilly (all CHD babies) and Ava (born with a tumor in womb around her neck), and Jamie (cancer) - these are all little ones that I think of each day and please pray for their wonderful parents've never seen such dedication, oh the stories I can tell - some who are just there day after day away from their home and families others who've traveled across the country and across the ocean to give their children the best care they can - and they need your prayers to help keep them strong as they care for these sweet children!

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?

Saturday, April 10, 2010

The Last Two Weeks in Review - And Homeward Bound we Are at Last!

The best news of this past week was that her cardiologist confessed that the fact that Gwenyth has come so far, so well, impressed all her doctors. He admitted that he was surprised that she even made it to birth. He was pleased and amazed by her success and progress. If he only knew how many people were thinking of and praying for her!

We learned how well her heart was functioning last week after the echocardigram. It was a huge relief to learn the heart was working well - even as all her clinical signs pointed to this fact, to hear what the doctors saw when they looked at her heart helped me know she really was on a good path. There was no narrowing at stitches which is something they apparently watch for - they glad to see how well everything looked where the homoegraphs were attached. Right (especially) and left ventricles are thick and enlarged, but still working well. The right ventricle is not stiff like they feared may be the case, instead it is relaxing and enjoying not having as much work put upon itself. The echo showed that the surgery corrected everything beautifully and the chaos inside her heart is resolved at last.

Her heart will be watched closely by our cardiologist at UVA with whom we began this journey. We will also have to be watching for signs of heart failure. Our hope and prayer is that her both her valves to last at least two years. Unfortunately, because the replacement of the aortic valve is so rare and there is very little data to go on, as well are the much greater stress level the valve is under compared to the pulmonary valve, the aortic valve may not last that long. Dr. Spray suggested one to three years.

The thought of bringing her back for surgery is unsettling. The fact that she will have to return is hard to accept - "experience" doesn't make this type of thing easier. And, I hear these poor babies, though tough little-fighters, they eventually are wise to the fact that going to the doctor, or a trip to the hospital is not going to be fun and they are fearful of anyone sporting a stethoscope. Getting stuck for blood work and being checked for vitals at all hours and whatever else that may be involved when you are just a little kid - who can blame them for their conditioned fear and loathing of anything medical?

Being a parent having to witness all this fear is also gut-wrenching - I can imagine how difficult that will be to see Gwen wise-up to this aspect of her life. But, no one said parenting was easy - no one has ever said that - and I'll take on whatever, as I can still remember holding her that moment after she was born and wanting as many moments with her as I could onward and into all the moments, whatever form they take, I did sign up for each one of them, from "normal new baby" mode which can be challenging in and of themselves to the next surgery.

In other good news - Gwen was nursing like a pro by the time we got home, so much that we were frustrated we were expected to keep the tube. Well, Tuesday night Gwen pulled her NG tube out (“I don’t need this Mom! I’m a normal baby!”) and because she was doing so well at nursing, we don’t need to put it back in unless she needs it. So far so good - but of course, as her mommy, I worry weather she is getting enough - and we do weigh her before and after, but we've been so busy that we've been a little flaky with I look forward to being more on top of her "intake" next week when we are more settled at home.

All of this combined lead to her cardiologist saying she was “entering normal baby mode.” She is off her diuretic and her anti-reflux medicine is optional. The jury is still out on whether she needs it or not (we actually put her back on since I first started this post).

This Monday she will have a pediatrician appointment and sometime very soon she will have a cardiologist appointment at UVA.

Home sweet home - at last we head there today. I will be glad to be home....but Myers and I learned that we love Philadelphia! The alleyways give Philly such charm and character. The ability to walk to stores and restaurants is wonderful. It helped that it is Spring and a warm spell at that. There is a great park two blocks from the apartment that Lillian loves. While Lillian has been happy here, the past couple days we’ve been hearing her ask over and over, “When are we going home to Dixie Avenue?" She is ready to move on and put this all behind us. So are we.

It’s definitely an adjustment to having a newborn baby and a two year old. Lillian is doing okay, but definitely struggling with the new situation. She often says “Daddy hold the baby now!” She is very sweet though and always runs to find Gwen’s pacifier if she is crying. She told the home nurse (who has come by twice to tell us that Gwen is doing marvelous) the story of how Gwenyth had to go to the hospital and have her heart fixed. She even told about one of the other babies who was next to Gwen in the CICU. We know Lillian thinks about them, so please pray for these children and their families:

Luke slowly recovering from surgery, Anthony awaiting a heart, Jacob recovering from surgery,
JP soon to have surgery, Haley slowly recovering from surgery, a little boy named Jamie here from Scotland for a unique new cancer treatment, Ava who is four months old and still recovering from surgery for a tumor in utero around her neck, and Zoe and Mia who are soon to be born and have their dear little hearts fixed.

And while I have your ear, please lift a dear friend Angie up in prayer as well - she is suffering the consequences of cancer treatments which are taking her away from her family even as she is there in the same house - how to care for three little ones when your body is not working for you? She needs as much prayer as Gwen, I know - and I can't help but take a moment to put that forth to my captive audience here.

It is almost a cliche' to talk about being "thankful for good health" - I have learned the meaning behind those words - and they will never be spoken lightly here.

Thank you again, to all of you out there - some of you whom I have never even met - thank you for being there, for your love, care and prayers. I am in awe of how many people took time from their lives to follow her story and to open a space in their hearts for Gwen - I am humbled. I will keep trying to get back here and keep trying to send more personal notes in reply - but please know, even as my personal responses individually have been silent - I appreciate every word sent our way, every well wish and all the prayers that I know made all the difference - she surprised the doctors - and I have all of you to thank!

Friday, April 9, 2010

Pictures to Tide You Over

It takes three adults to take care of two children. Or maybe just two adults to take care of two children and another adult to take care of those two adults.
We have a very long post that needs to be edited, but will be posted later today!
Please check Lillian's blog for more pictures!

Present from Aunt Nelly and Uncle Bobby

Weighing is part of our everyday lives now. We need to make sure Gwen is getting all she needs from nursing.

Sweet Aunt Nelly and Uncle Bobby

Look at those booties!

All ready to go home from the hospital!

Cutting her fingernails for the first time.

Sisters cuddling.

Action shot!

The day after she pulled out her feeding tube. As long as she eats enough from nursing, which she has done, she doesn't need to have it put back in.

Gwen at the zoo!

Tuesday, April 6, 2010

Just a quick note to say everything is going extremely well, but we are all tired. Any down time we have is spent sitting, but most of the time we have been juggling Lil, Gwen, and those pesky mundane things like eating, drinking, and taking showers.

I will help Laura post tomorrow. We have a lot to say about what's going on!

Monday, April 5, 2010

We are home

Laura, Gwen and I, with Becca, Grammy and Papa's help, moved back to the apartment today.  How do we have this much stuff?  It was a really good feeling to leave, but sad to see so many folks we now know still there with their kids.

Believe it or not we have to go back to CHOP tomorrow for a outpatient doctor's appointment with the cardiologist.

Weighing Gwen around nursing is much easier now that she doesn't have wires on her.  And she took in 44mL in one session today! At this rate we'll be able to ditch the NG tube in a few weeks.

Saturday, April 3, 2010

What we are doing this weekend

Gwenyth and Laura are getting a nap right now.  Gwen has started nursing, twice each of the last two days.  She is getting ~20mL each time she nurses, that's about half of what she needs.  It's the biggest struggle of the day, very frustrating for both Laura and Gwen.  For example the last time she ate, we started trying to nurse her at 12:10 and finally she ate at 1:22.  We weigh her before and after she nurses, and then feed the rest of what the nutritionists have decided is the right amount for her.  The hope is as she gets bigger she will have more stamina (and we will have learned her hunger signs) then she will get her full feed from nursing.

Our family continues to be spilt into three parts, Laura and Gwen at the hospital, Lillian at the apartment, Myers at RMDH.  I can't wait until we are all under one roof again.  We are so lucky to have Jackie and Becca here to help us.  Bob and Nelly and their dog Linda and Bill are visiting for Easter weekend.

Depending on when our next outpatient doctor's visit is we hope to travel back to Harrisonburg next Sunday. We will see how it goes. Gwen has been doing so well I can't imagine we'll be feeling like we need to be near the hospital.

Pray that we

  • continue making progress on nursing with Gwen
  • make the move out of the hospital and RMDH and into the apartment
  • handle all the logistics of having a new born at home along with all the other details of daily life

Friday, April 2, 2010

Target Discharge Day

We have our target discharge day: Monday.

Thursday, April 1, 2010

Gwen's Good Day

Everything was really great at the hospital today. I'll leave more explanation to Laura and Myers because they are hopefully getting more details about her tonight.

She loves this seat.

Such a sweet face!

Big yawn!

Prepping the breast milk .

Looking around.

A sweet family portrait.

Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...