Surgery
August 27th, 2009
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We received a call yesterday from the surgeons office. They need to move Faith’s surgery to September 3rd. We will keep you all posted as we get closer to Faith’s surgery and recovery.
I never knew ‘busy’ until now…
July 23rd, 2009
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So..we’ve been just a tad busy lately. I’ll try to write a brief update on the highlights before Faith wakes up to eat again.
Faith has been doing really well! She has an appointment with the pediatrician, nutritionist and physical therapist once a week. So that in and of itself keeps us busy. We’ve finally gotten her feedings figured out so she’s been gaining more weight now like she should. She now weighs 9lbs 5oz. She had her core evaluation for Early Intervention on Monday and did very well. There were only 2 areas where she was mildly delayed and only by like 2 or 3 points each. Our coordinator said that if she didn’t have a dx Down Syndrome she wouldn’t have qualified for Early Intervention services because she did so well. So that was really encouraging. She is doing well with PT and we work with her throughout the week as well.
We actually went to the cardiologist today and the appointment went well. She had another echocardiogram so they could see if anything has changed. The cardiologist said that since she has some pulmonary hypertension and since she’s a little bit bigger now it might be good to do her surgery sooner rather than later. He’s going to discuss everything with the other doctors on Faith’s team and see what everybody has to say. We should be getting a call from him tomorrow to let us know what’s going on. He’s pretty sure we’ll be looking at her surgery for the end of August.
Matt is running around like crazy between everything with Faith, his school work for his masters program, and helping get everything ready for the Erie county fair in August. Hopefully he won’t be quite so spread out once this set of classes is done and the fair is over.
Alrighty, she’s waking up and she’ll be hungry…so time to go!
7 weeks and 2 days down
July 10th, 2009
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So, it has been just over 7 weeks since faith was born. It is still amazing to me to think that God has entrusted us with her. Nell and I are so much happier having her home.
The last few weeks have been jammed packed with appointments. Thankfully everything is still about the same as it was when we left the hospital 5 weeks ago. Right now, we have started physical therapy and visits with a nutritionist. The physical therapy is to help Faith gain some more muscle tone to deal with the Down Syndrome. The nutritionist is working with us to help Faith gain some more weight. It is very difficult for Faith to gain weight because of her heart condition. We are getting there though.
Other than the weight gain, nothing health wise has changed. Faith has changed so much though. She is awake a lot more. They are surprised how awake she is because of the heart condition. She also likes to be held, ALL THE TIME. It makes it a little difficult to get things done because she will fall asleep in your arms, and then as soon as you put her down, she starts crying. Good times.
We appreciate everyone’s continued prayers. We all have faith that God can still work miracles.
Finally Home!
June 5th, 2009
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After 2 long weeks driving back and forth from the hospital, we are finally all home together! We spent Wednesday night at the hospital rooming in with Faith to make sure we were comfortable with the monitor and O2 she would be coming home with. Yesterday, we all came home from the hospital together. Faith is doing very well, and we’re getting used to managing her monitor and O2 at home. I think being around it so much at the hospital helped with the transition home. We had a good night last night, Faith ate well and everybody got a good night sleep. We have a quite a few doctor’s appointments lined up through this month, so we’ll stay busy.
The nurses in the NICU were great! They took such good care of our little Faith, and they all loved her. It made Faith’s stay at the hospital a little less stressful…plus Matt kept them all in line lol. It was nice to have nurses who put up with Matt’s sense of humor…kept the mood and atmosphere more upbeat.