Monday, July 2, 2007

first doctor's visit

We have just returned from our first visit to see our obstetrician after Copeland's trisomy-18 diagnosis. Last night, Conor and I sat down and prepared a list of questions we wanted to ask him about this diagnosis, what direction we should take in terms of Copeland's future (both in-utero and out) and also how we deal with it from a genetic perspective. I wanted to give you all a glimpse into the conversation we had with him by detailing some of his answers - and also by letting you know that it appears we will probably be working with some specialists from here on out.

1. Are the tests we had run to determine whether Copeland has trisomy-18 always accurate? In the cases our OB has had, have they ever turned out to be "mistakes"?

Ironically, despite the fact that trisomy-18 is actually not terribly uncommon (apparently this chromosomal abnormality occurs in about 1 of every 3,000 births), our OB had not had anyone carry one of these babies past the first trimester (many miscarry early) and didn't know a lot about the road we are preparing to walk. He did say, however, that the amniocentesis tests we had performed are almost 100% accurate. We know God is able, and we continue to pray for a miracle for Copeland, but it gives us some sure-footing as we head into these next months.

2. For some reason, I have been particularly smaller (in size) with this pregnancy than I was with Sellers. We also know Copeland is measuring a few weeks behind in growth. We wanted to know if these factors play into the likelihood that she won't make it to birth.

An important bit of information we gained from posing this question was that with trisomy-18, there is literally NO WAY for anyone to perfectly determine how long Copeland will survive. The vast majority of trisomy-18 babies don't live for long after birth (most not for longer than a year, although this is fairly remarkable, as we've seen in our research and from hearing others' stories), but some miscarry before that. We know that every day with Copeland is a blessing, and we are now prepared to live without much expectation for the day-to-day and simply pray she continues kicking! Right now, that's the only "sign" we have of her life. I will go back in for appointments every 2 weeks from here on out, but provided her heart keeps beating, we will be approaching her birth as we would with any healthy child.


There were certainly more questions that we placed before our OB, but many he was unable to answer (even by his own admittance). As we have learned through much of the medical journey we've walked these last two years, specialists are just that: specialists. There is a lot more information we can gain from meeting with men and women who are around trisomy-18 babies more often, so we will hopefully continue to acquire a little more knowledge about what Copeland is facing. However... we feel led to limit the scientific "input" a bit... we have learned nothing at all if we don't know that God is bigger, God is still the One who sits on the throne, and no one and nothing shares power with Him. So, having said that, we will probably begin shifting our eyes away from the facts and figures side of things and simply embrace Copeland and her life as exactly what God planned it to be.

We would continue to ask for your prayers. We felt them heavily this weekend. God has really given Conor and I a strength we can't explain, and I believe, looking back, much of the heartache we've been through has girded us up, so to speak, for what we are facing now.

I will ask you specifically to pray for a series of tests we are having run a week from now to determine whether or not trisomy-18 is a potential problem we may face in subsequent pregnancies. We are praying against that. We know the Lord will equip us to face that issue if it does, in fact, arise, but we are asking for His mercies... that we could "walk away", as it were, from the fear that we are genetically more inclined to face this situation in the future.

I promise my next post won't be so bogged down with medical information! Thank you for loving us through this and for your amazing encouragement. Please know your prayers are literally setting our feet one in front of the other.

26 comments:

Sheila Hilton said...

Conor and Boothe,

Your strenght through all of this has been so encouraging. We all know that it is the daily prayers being sent up that is giving you the strength to make it through the day and night. I sent you an email last week about my own daughter that was born with T-18 and I am going to send another email with questions that might be helpful to ask your doctor. Let your faith be your guide through all of this.

God Bless You,
Sheila Hilton

Me said...

Thank you so much for sharing what the doctor said with us Boothe. I have been following your blog and lifting you and Conor up in prayer daily. David and I believe in the power of prayer...and we believe in a victorious God! We love you!! Kaylane Crandall

roland lundy said...

Boothe,

You looked beautiful Saturday night....I enjoy your writings....you should write a book....

Praying for you and your family

Anonymous said...

Boothe and Conor,

Just wanted you to know that you are in our prayers. The hardest thing a parent can go through is losing a child. I just know that the Lord sees you both and knows your grief and will sustain you with comfort and peace.

You and your family are loved so much.

Mona and Dave

Anonymous said...

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Monts said...

Boothe and Conor, Just wanted you to know that you are in our prayers. The hardest thing a parent can go through is losing a child. I just know that the Lord sees you both and knows your grief and will sustain you with comfort and peace. You and your family are loved so much. Mona and Dave

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