Anneke Hope

"Be joyful in hope, patient in affliction, faithful in prayer." ~ Rom. 12:12

I Love Summer This Much!!!

Born: February 20, 2004

Weight: 8 lbs. 11 oz. Length: 21 3/4

Anneke was born with several major heart defects. A combination of Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, a Common AV Valve, and a Coarctation of the Aorta. We orginally thought she would only have to have a series of three surgeries within the first few years of life, but after the first surgery at three days of age we received the news that it helped but there was severe leaking of the AV valve and a heart transplant was necessary. She received her new heart on June 27, 2004. We are praying that God will continue to do amazing things in her life.

Journal

Thursday, July 2, 2009 3:31 PM CDT

We are home! After being told we would be at the hospital for a few days, I totally anticipated spending the holiday there. If we've learned anything from all of our hospital experiences, it's that you can tack multiple days, tests, and docs than what they tell you. It's just the hospital way. So when the infectious disease doctor came in yesterday morning and said, "we need to get her out of here." Well, there was much rejoicing and a slight bit of doubt. Anticipate the worst, then you can celebrate when the best happens! Not a terrible policy to have because it was sweet goodness when indeed we got to leave yesterday afternoon!

One night in the hospital was about all Anneke (and I) could take. So, thanks God, for answering prayers! Now that Anneke is older, she definitely knows what's going on and what's about to happen to her. So starting the IV and undergoing the sputum sampling (saline squirted up one nostril while a vacuum sucks it out the other) was not a pleasant ordeal for all of us involved (and boy, is she getting strong!). She is SO good about giving blood for her regular labs, doesn't even shed a tear for that, but with all of this, she would scream bloody murder and fight all she was worth. I am praying that this hasn't ruined blood draws from here on out.

So, the diagnosis is this: there is no diagnosis. Well, nothing new anyway. She still has pneumonia but we really won't know WHY everything went down the way it went down until all the lab work is back. The ID doc sent it all away but it could take a while to get the results and by then, God willing, Anneke will be better! I am so glad that Mike is an RN and understands thing now on a whole other level. By the time the ID doc left, I was glassy-eyed and confused. Not Mike. It was pretty sweet.

She is on some much stronger meds. They pretty much decided, since we don't know what's going on, let's bombard her body with drugs that will kill anything BUT her. The good news is that it seems to be working already. Her fever is low without Tylenol or Motrin and she is active and cheerful. Her cough is still loose but not as constant. After 11 days of raging fever, etc, it is VERY good to see this change.

I think the worst is over. We've made it through another stormy experience. I think that in a sense we sort of sank into complacency about Anneke and her health. She has been doing so well and looks so "normal" that we've been treating her as thus. Even though we will not choose to have her live in a bubble and refuse her a life that we think she's worthy of and deserves, we have been reminded of her frailty. We still need to be vigilant of the people she comes into contact with (as much as we can), the situations we expose her to, and keep a level of hygiene in our house (no, we are not gross, but it's been easy to not wash hands as often as we should). I would rather not have gone through all of this, but it gave us a wake up call. Also, I think it was God nudging us back into focusing on Him and acknowledging His control. How easy it is to set our sights on the temporal things when life seems to be coasting along. I choose to look at this as a slight hiccup in "Adventures with Anneke", but a very important reminder where this path ultimately leads us. If it requires frightful, inconvenient, and irritating situations (and those seemed to abound this hospital stay), then so be it, as long as we always remember where our focus should be.

A very heartfelt THANKS to all of you who supported us, loved us, and prayed for us through this ordeal. Once again, you have reminded us what a blessing it is to belong to a community of those love the Lord, trust in Him, and show brotherly love. May we be as kind to you in your time of need.

Hospital Information:

WE ARE HOME!!!

Links:

E-mail Author: 4nwfun@earthlink.net

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