Finally, an update!

February 17th, 2010

I came home from the appointment yesterday completely worn out and with my mind in a muddle.  It was a very long appointment.  I was at a loss until now to know exactly how to update everyone.  We didn’t have as many answers as we had questions.  I needed time to rest.  And we needed time to research and talk.  And talk and research and talk……

The appointment went well, it was just not the appointment I was prepared for.  For starters, it was not even the medical practice I had thought it was.  For another, they did not do a fetal echocardiogram.  Apparently that is only recommended if this level of ultrasound was inconclusive.

I was prepared for coldness, and for philosophical challenges to the decisions that Joe and I have made.  But instead, the staff were all very kind and respectful, and gave us lots of information.  Lots and lots of new information.  I am so thankful for the presence of my father and midwife, especially as my mind began to balk at the amount of information coming in!  God also worked this out so that last night was our regular date night, and Joe is home from work today, soooo….we’ve had plenty of talking time!

We have some good news!

Verity does not appear to have club feet!  The doctor said they look completely normal.  And she is exactly where she should be in her growth!  At 20 weeks and 5 days, she measured 20 weeks and 5 days.  We are thanking the Lord for these two things!

The scan confirmed that she does not have a nasal bone.  She also has either an atrioventricular canal defect OR tetralogy of Fallot AND an atrial septal defect, the doctor could not be absolutely sure which one.  Both of these are serious heart defects that could affect her growth and well-being in the womb.  He also found that the rate at which her blood was flowing through her heart was faster than normal.  We’re not yet sure what that may mean.

Based on these findings, and all the range of possibilities that could be involved, the doctor made many recommendations as to the plan of action.

Rather than go into all the details here about either the possibilities or the recommendations, suffice it to say that the possibilities included some scenarios that we consider to be far-fetched, and his recommendations were what we consider to be an aggressive approach, based on worst-case scenarios, but not necessarily helpful in preventing any of the scenarios.  I hope this is making some sense!

This is as far as we have gotten in making some decisions:

We do not plan to have an amniocentesis, either now or later, to get a conclusive answer as to whether Verity does or doesn’t have a chromosomal abnormality, and if so, which one.  The evidence looks to us to be overwhelmingly in favor of Down syndrome, so while we will stay aware of the other possibilities, we know that those are very rare, and we will not assume them to be the case.  These would include other trisomies and the possibility that she has no chromosomal abnormalities.

If she is still alive around 34/36 weeks, we plan to have the fetal echocardiogram done then to help determine which of the heart defects she has, and if necessary, another ultrasound to determine what condition she is likely to be in at birth, to help the medical team give her the treatment that she needs after her birth.

At this point, we are waiting for our midwife to help us get answers to our questions about which hospital we will probably need to plan on for her delivery.  We are leaning toward delivering at the closest tertiary care center, which for us is Hershey Medical Center.  For several reasons, we don’t think it would be best to wait to choose a hospital until after those test results come in near the end of pregnancy.  And we know that the decision may end up being taken out of our hands.

So thank you all for continuing to uphold us in prayer!  Yesterday, it all looked to me like a tangle of inconclusive information and complicated decisions, but God has been giving us clarity of mind and the leading we need right now!  He is the One who has set our feet on this path, and we are trusting Him to continue to show us the next step.

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5 Responses to “Finally, an update!”

  1. Lauren says:

    Those sound like very good decisions to me.

  2. Brandylynn says:

    I am so thankful that the Lord is giving you clarity of mind, and wisdom. (James 1:5,6) We continue to pray for you. We know the fears, frustrations and uncertainties that comes with a special needs child/chromosomal “abnormalities”. It can be a confusing time wading through all the medical stuff, and the emotions of the heart. However, we know that the Lord is a faithful God, and while we do not know His plan for precious Verity, we know that He works all things to His Glory. Our prayer is that He is glorified, and that your family continues to rely on Him for comfort, wisdom and strength. We are praying for conclusive answers for Verity’s possible health issues/complications so that she may receive the best treatment for her situation. Keep holding fast to His Word, and know that there are many praying for your family and for little Verity.

    Blessings,

  3. It’s so good to hear from you Susanna. :) I felt that there was a lot of good news, and I will pray that the news keeps improving and that God keeps working. We knew a little boy who had a club foot and it was really difficult, that alone. So I am really rejoicing for you all. Praise God!

    ((((((((((((((((((((hugs)))))))))))))))))))))

  4. Shari~hotfudgecustard says:

    PRAISE THE LORD about her feet!!! PRAISE THE LORD!!! She will “run and not grow weary,” she will “walk and not be faint.”

    Praying for you all as you “wait on the Lord.”

  5. Lilyofthevalley (Tanya L.) says:

    Praise God for the good news you are able to share! praying for you often and may the Lord be your strength. (((hugs)))

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