Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Agnes, Woman of Mystery

on June 26, 2013

IMAG0148It’s been awhile since I posted because so much has happened so fast. Agnes went to surgery for her intestines, then she went to another surgery to install a long-term secure I.V. called a Broviac. This kind of I.V. goes in through the scalp and threads through a major artery in the neck and into the heart. It’s way more stable than an I.V. in a foot or arm vein because it uses a major vessel rather than a peripheral vessel. So, Agnes has been pretty much unconscious for almost a week, recovering from her various surgeries. The doctors decided to not remove her ventilator tube on Monday as originally planned because of the Broviac surgery. It was a bit of a surprise that she needed it, but the docs couldn’t use any of the other I.V. methods with Agnes for one reason or another.

Jeremy and I met with the geneticist on Monday. All of Agnes’ problems appear to be related because of an anomaly with her chromosomes. Sometimes there is an issue with the development of a fetus, or even as far back as the egg and sperm forming, and the genetic material gets funny. This can happen randomly to any baby, and Agnes is the lucky winner in this instance. In her case, she has some extra genetic material on one of her chromosomes. This is no big surprise to Jeremy and me; since we first found out about the ventriculomegaly, we’ve known that the most common cause of that condition is a chromosomal or genetic issue with the baby. We were even prepared back at 20 weeks to learn Agnes would have Downs Syndrome. Well, she will have something. The exact duplication of genetic material that Agnes has can’t be labeled by a specific syndrome or condition, which we learned from her nurse happens about 50 percent of the time. The geneticist was able to give us some predictions about Agnes’ future based on similar cases, but her specifics will only be revealed in time.

The doctors are concerned about Agnes’ long term outcome, but at the same time they can’t give us many solid  predictions because Agnes is a unique individual and her case is one-of-a-kind. Based on the similar cases the doctors have in their literature, they can tell us that Agnes will have multiple health problems, and she will have developmental delays. The geneticist can’t say how severe the problems and delays will be; that will only be revealed in time as Agnes grows older. He was able to say that Agnes’ outcome depends on the severity of internal issues that are discovered. She did have the mal-rotated bowels which were repaired, and the mild ventriculomegaly. So far her heart looks pretty darn good, and she has only shown a little trouble breathing on her own. Agnes has responded to physical therapy to help improve her poor muscle tone and contracted joints in fingers, wrists, and knees. We still don’t know if she will tolerate feeding by mouth because she has been given very little food the whole time she’s been born. And there is still lots of uncertainty about her airway and lung functions. But, a lot of the early signs do offer hope for a more positive long term outcome in Agnes’ case.

I know our situation has potential to be very grave. The neonatologist taking care of Agnes told me that a baby in the NICU several years ago with a similar diagnosis did fairly well, living to age 13. I don’t know if that is supposed to be encouraging or a “be realistic” bit of information, but I don’t fault the doctor for sharing it with me. Any amount of time Agnes can be with us is a great blessing. I’m realistic about her condition, and I’m prepared to accept it whether she lives 13 days, 13 years, 30 years, or longer. Of course, I hope she lives a long long time!

I do believe wholeheartedly that Agnes is a great grace in our lives, no matter how long she lives or what condition she is in long term. She is already an apostle, bringing many people closer to God in prayer. Because her condition is so mysterious, she is bringing us the opportunity to continually offer prayers and always trust in God’s will. Agnes is giving us the opportunity to be mindful of the Blessed Mother’s close presence at every moment.

Agnes is teaching us patience and acceptance. She is teaching us about the miracle of life and how every person has special gifts and a particular mission to accomplish on the earth.

It would be nice to know more about Agnes’ prospects for the future, but I almost prefer it to be unknown. This way we have more opportunity to be hopeful and trusting in God. There is more opportunity to recognize the small miracles. Like today: the doctor just decided to reduce Agnes’ ventilator rate and all but promised the vent tube would be removed before the weekend! This was a great surprise, and I have no doubt in my mind that it was the result of all the prayers that went up last night on Agnes’ behalf. This is proof that now is the best time for prayer, even more so than before!

So, this week has been really difficult and stressful on the family, but there is a mix of upsetting and hopeful news. Of course I’m very scared about my future with a special needs baby, but Agnes is giving me the opportunity to rely on Mary and the Lord for strength. I can continue to be hopeful because things will change from day to day, and I believe in the power of prayer.

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2 responses to “Agnes, Woman of Mystery

  1. Laura says:

    This is a beautiful tribute to your daughter – and a testimony to you as her mom. What a gift to her, to have a mother with such depth of love and the gift of words to express it so eloquently, even in the raw midst of what you are going through day by day. Our prayers are with all your family.

  2. Penny says:

    Judy thank you for letting us embrace this time with you by being so kind as to post about your daughter. I hear wonder and fear and tiredness in your words. but also faith. I personally am looking forward to the day when the breathing machine is gone and her eyes are open and she fixes her gaze on your face and makes her first little sound. So much bonding time has been spent with machines and hospitals. I yearn for that little moment of grace for both of you.

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