4.29.2008

Pictures...and stuff

My amazingly talented brother (also an aspiring photographer) came to the hospital last week and took some really really neat pictures of little Grace. You should check them out, because they look wonderful and, hey, who can get enough of Grace ya know? So, his blog is linked on my page, its the Alan J Photo link. You should check them out, they're mighty cute!!
Oh, and the reason topher and I haven't updated in a while is because we've both been too fuming angry to do so. Let's just say I hate hospitals. In particular, the hospital Grace is at, because they are dumb, won't communicate with each other or us, and seem to want to keep Grace forever!!!
As you can tell, I'm still a LITTLE/LOT angry...so I'm gonna wait a couple more days to calm down, and then I'll give some more updates. :)
Please, please, please, continue to pray that she progresses, and, more importantly, that her dumb Doctors SEE her progression and let us take her home.
*sigh*
Thanks!
Alysia, Topher and Grace

10 comments:

Allison said...

I can understand how you feel. As parents you have a certain intuition about your child that the doctors don't. They go by what they read in a book, you go by what you feel in your heart. Everyone wants what is best. But, never doubt your gut feeling.
I hope you can get it all sorted out & bring your sweety home soon. You are in my prayers.

Super Daysh said...

Have Alan get me some pictures now so I can make your baby announcements. They are really cute. She is a cutie!

AJ Finnegan said...

Hi guys,

Man, I can feel your frustration through the computer monitor!! I'm so sorry you feel so flustered about not being about to take Grace home yet. :(

I just keep thinking about being at the hospital the day the doctors told you she wasn't eligible for the three part surgery (you guys didn't even know I was there, I'm sure) and how grim her outlook was. It's a genuine miracle that taking her home in such stable condition is even a possiblity! The Lord has blessed Grace with miracles beyond what I thought was even possible that day.

As far as the doctors go, I've never been in a situation even close to this, so I can only go off of my intruding gutt-instinct: doctors are trained, and learn from difficult experience, that it's "better to be safe than sorry." That's to protect them legally, of course, but I do believe that most doctors also care very much about their patients and their families as well.

I agree with the previous post that as parents we have intuitions about our kids that doctors don't have. However, what we DON'T have is the experince they do. Again, I'm not in your situation so I can only stand high and mighty on my soap box and make wild guesses, but if they are insisting Grace stay in the hospital a while longer, I'm sure they have reasons that they might not even want to explain to you - possibly a past experience of sending a child home before they were comfortable with it, with bad results.

It's hard to guess why the doctors are reluctant to release her, so I'm probably doing a bad job of it. Sorry! I know I'm also doing a bad job of being empathetic, and that's not how I'm meaning to sound. What you've been going through is FAR beyond my ability and life experience - smart as I try to pretend I am - and you've both been very mature and patient.

I've been reading the other blogs of heart babies, and I've found a major connection: frustration only increases once the babies are home because the parents are getting no sleep at all, they can't take the baby anywhere, and most importantly, keeping up with all the shots and medications entirely on your own is overwhelming. I really feel for these parents, and I hope you have an easier time of it than they have seemed to have.

Also, it appears that every one of these babies has been taken back to the hospital for another week or so stay within a few days of being released. Maybe you can avoid the constant back-and-forth if you wait a couple more days? Who knows?

So my high-and-mighty, entirely-inexperinced advice is to be patient and try to enjoy having a bit more help with Grace while you can. There is such a LOOOONNNNNGGGGG road ahead for you, with the heart transplant and subsequent treatment.

I'm always anxious to get my babies home from the hospital and be their fulltime mommy, then even my baby girls - healthy as they've been - keep me up all night, and freak me out somehow and end up in the emergency room a few times in their first few months! Babies are so fragile, and Grace is ten-times as much as my babies have ever been, so I'm really cheering for you guys! You've truly impressed me with your maturity and faith!!

I love you all so much. I'm really praying for Grace to continue to recover, to get a healthy heart for her tiny body, and for patience and peace to somehow flood your spirits. I honestly can't begin to imagine how worn out and frustrated you are at this point.

Just ignore all this if I've overstepped my auntie boundries and offered unwanted/unwarrented advice.

I do love you very much, and I'm entirely smitten by Grace. My darn internet is being too slow for these new photos to load, but I'll keep working on it. I can't wait to see the pics your brother took!

Amy :)

Anonymous said...

You shouldn't be fearful to bring her home. Not all babies get sick at home, and I don't know of any who need shots, administered by their parents. Most heart babies actually thrive at home. Many prayers for your family.

Thoughtful Runner said...

Hi Little Frustrated Bug,
I think I can empathize with some of your frustration with medical practitioners, but I also see a lot of wisdowm in Amy's post and would perhaps just add my two cents worth.
Remember - medicine is probably almost as much art as it is science in some cases. I continue to be impressed with what Primary Children's does for so many kids that have serious health issues. They are pretty amazing - notwithstanding issues they, no doubt, have that are like other large hospitals with literally dozens, if not hundreds, of doctors, nurses, therapists, etc. What you DO have a right to is the collective thought and opinion of the Lead Doctor or the Medical Team that is responsible for Grace - and I applaud your effort to make sure you are getting it - and not an inconsistent, ever-changing situational report. All hospitals have Patient Bills of Rights - and one of them is certainly to provide you the best possible medical information and advice. If you need help pinning that down, let me know.
I can at least partially understand your desire to get Grace home, although I think I would be absolutely petrified of the prospect. When we are confident that what we (the collective "we") are doing is in Grace's best interests, then that course of action - whatever it is - becomes easier to follow.
Just know that you, Topher and Grace are continually in our prayers - and we hope we are also ready to do whatever we can do that might be helpful in her situation.
We love you! (Make sure your steam results in positive action! Let it power your home appliances for a day or two! :) )Dad

Anonymous said...

Hi There,

I have been trying to compose a letter in my mind and heart that could possibly convey what I feel. I then knew what I wanted to say. I opened your blog, and low and behold-my darling youngest daughter had captured the very words of my heart! Way to be in tune, huh? I would just like to add one more thing: Medical protocol know is very strongly," Get the patient out of the hospital as soon as possible." Those hwo pay for medical services really put pressure on doing this. No kidding, there are many outpatient surgeries that reqired at least a weeks stay fifteen years ago. I spent a week-10 days on the hospital after having five of my six babies. Neither myself nor the baby had complications.
That was the protocol at that time.
Believe me, those doctors will send Grace home when they feel it is really safe and that she will have the best chances. Our neighbor, whose baby was born with the exact problam as Grace, was in the hopital 11 weeks. And lo and behold, the perfect heart was made available at that time. Nathan is fifteen now.he pictures your brother took are wonderful!!! Thank him. She just looks so strong. You can seen her umproving before our eyes. Dont' worry, the doctors do care and want her to bless your lives for many years.

Much Love and respect,
Grandma Ann Marie

AJ Finnegan said...

Just a note ..... after I had a better understanding of the "frustrations," I feel I should adjust what I said earlier. I totally understand why Toph and Buggy are flustered to the hilt - every doctor tells them something contrasting to the last one on duty, so they are on a total rollercoaster of emotions.

I just want you guys to know that my prayers for you have been constant today, and you are right to be upset and confused about what is best for Grace.

Our love and support is here no matter what - so please be patient with each of us who really has no idea how you feel, or the struggles you face every single day! You are all so loved. Our words (and advice) sometimes fall short of explaining that properly.

Hang in there! Little Grace is a miracle and we are all inspired by your faith and courage on her behalf!

Amy

crowfamily said...

I know just how you feel. But count your blessings. When Paisley was in the NICU I only saw her doctor once (and that was pure dumb luck) and he talked to me for maybe 5 minutes. Her day nurse (the one I saw the most) was a complete nightmare. I am just so happy for you that your nurses are being so wonderful.

kalani said...

I am so so sorry that things are so frustrating for you right now. I know how it is to have doctors telling you different things all the time. I never knew last year what was going on because there were so many things said to me and Dallin had it even worse since I was out of it. I hope it gets better and we are so very excited to come see you guys and little Grace tomorrow. We love you and pray for you. (Dalek prays every day for Grace to be strong enough to play with him.:) Kiani never lets a prayer going by without mentioning you and Grace.)
Hang there,
Kalani

Likes Chocolate said...

Hi! You do not know me, I found your link through another heart patient. I completely understand about your feelings about hositals and doctors our 15 month old has tetrology fallot which is also a heart defect. He had surgery almost a year ago and will need future. I will keep Grace in my prayers. Here is a link to my family; however, haven't been brave enough yet to post our story. Thank you for sharing your story. Hang in there. tp://travelingbugwiththreeboys-kelleyn.blogspot.com/