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 get...so 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 it...so 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!

4 comments:

  1. Laura, what a wonderful post. I'm sure you're on the road right now, happy to be going home. Gwen is such an amazing baby, a true miracle. Don't worry about the replacements yet. The docs often have no clue, it really is a guess and depends so much on how her body handles it. Gabe should have gone 3-5 years but went sooner, some of the truncus kids have gone very long. The longest I know is 14 years and counting, still on his newborn conduit! I have heard of some dilating so it's just such a guess!

    Be prepared for freak outs. I took Gabe to the PC more times than I can count for heavier than usual sweating, or blueness in his feet, or a few other things and everything always looked just fine. We were also fortunate that he never was nervous. I'll have to show you his photos sometime, smiling and waving from his crib immediately after his heart cath and also smiling just before surgery. He actually loved medical things even though he went through so much. Gwen will take her cues from you so stay relaxed and don't let her see your fears. She'll do just fine!

    Laura, give me a call, maybe one day when my boys are at school this week or next I can stop by and offer a hand with whatever you need, and meet your miracle baby!

    Becca C.

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  2. CanNOT wait to meet her :) And see all y'all again!

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  3. Rejoicing that you get to go home!! Perhaps we'll be able to meet her before we move away.

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  4. Laura, Love the post (and the picture of you and Gwen at the zoo from the previous post!) I'm so happy you guys are on your way home and have obviously received wonderful care and treatment at CHOP. It brings me comfort. Thanks for mentioning Zoe; never can have too many prayers! Admittedly, I am envious that you're on the way home and we've just finished packing for our trek to Philly. Hopefully, our journey will be as successful as yours and we'll be home quickly as well. Someday, our amazing little fighters will have to meet.

    Take care of yourselves and we'll continue to follow and keep Ms. Gwen in our thoughts and prayers.

    Stacey

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